an ethical framework for organizational resource
TRANSCRIPT
Duquesne UniversityDuquesne Scholarship Collection
Electronic Theses and Dissertations
Spring 5-11-2018
An Ethical Framework for Organizational ResourceAllocation for Patient Services in Health CareNatalie Dick
Follow this and additional works at: https://dsc.duq.edu/etd
Part of the Bioethics and Medical Ethics Commons
This One-year Embargo is brought to you for free and open access by Duquesne Scholarship Collection. It has been accepted for inclusion in ElectronicTheses and Dissertations by an authorized administrator of Duquesne Scholarship Collection. For more information, please [email protected].
Recommended CitationDick, N. (2018). An Ethical Framework for Organizational Resource Allocation for Patient Services in Health Care (Doctoraldissertation, Duquesne University). Retrieved from https://dsc.duq.edu/etd/1458
AN ETHICAL FRAMEWORK FOR ORGANIZATIONAL RESOURCE
ALLOCATION FOR PATIENT SERVICES IN HEALTH CARE
A Dissertation
Submitted to the McAnulty College and Graduate School of Liberal Arts
Duquesne University
In partial fulfillment of the requirements for
the degree of Doctor of Philosophy
By
Natalie Dick
May 2018
Copyright by
Natalie Dick
2018
iii
AN ETHICAL FRAMEWORK FOR ORGANIZATIONAL RESOURCE ALLOCATION FOR
PATIENT SERVICES IN HEALTH CARE
By
Natalie Dick Approved March 22, 2018
__________________________ ________________________ Gerald Magill, Ph.D. Henk Ten Have, M.D., Ph.D. Vernon F. Gallagher Chair Director, Center for Healthcare Ethics Professor of Healthcare Ethics (Committee Member) __________________________ ________________________ Joris Gielen, Ph.D. Henk Ten Have, M.D., Ph.D. Assistant Professor, Director, Center for Healthcare Ethics Center for Healthcare Ethics (Committee Member) (Committee Member) ____________________________ James Swindal, Ph.D. Professor and Dean of McAnulty College McAnulty College and Graduate School of Liberal Arts
iv
ABSTRACT
AN ETHICAL FRAMEWORK FOR ORGANIZATIONAL RESOURCE ALLOCATION FOR
PATIENT SERVICES IN HEALTH CARE
By
Natalie Dick
May 2018
Dissertation supervised by Dr. Gerald Magill
Unanswered questions on how to allocate scarce resources in health care settings are often left to either bedside decision-making or, at best, the organizational policy level. Yet, there is little attention and no consensus on how organizational policy should address resource allocation in health care. An ethically sound framework is needed to guide policy development for resource allocation within health care organizations. In addition, a more comprehensive study of concepts tied to moral obligations of health care organizations is needed in terms of human rights, health disparities, and patient care quality. Until now, human rights literature has largely focused on obligations of governments and rarely addresses which obligations organizations may have to protect or promote the human right to health. This dissertation seeks to address the gaps in literature about the moral obligations of health care organizations to protect human rights and develop equitable resource allocation policies. The purpose of the dissertation is to establish an ethical framework for organizational resource allocation in health care.
v
TABLE OF CONTENTS
Chapter 1: Introduction ............................................................................................................... 1
Chapter 2: Human Rights in Health Care ................................................................................ 50
2a A Right to Health Care .......................................................................................................... 50
2ai Health Care as a Human Right ........................................................................................ 50
The Emergence of Health as a Human Right ........................................................................ 50
Availability, Accessibility, Acceptability and Quality ........................................................... 54
2aii Equity in Health Care ...................................................................................................... 61
Horizontal Equity .................................................................................................................. 61
Vertical Equity ....................................................................................................................... 66
2b Human Vulnerability & Social Responsibility in Health Care ......................................... 70
2bi Respect for Human Vulnerability in Health Care ......................................................... 71
The Nature of Human Vulnerability ...................................................................................... 71
Special Vulnerability ............................................................................................................. 74
2bii Social Responsibility in Health Care .............................................................................. 80
Foundations of Social Responsibility .................................................................................... 81
The Social Dimension of Health Care ................................................................................... 85
Chapter 3: Patient Care Quality & Patient Safety .................................................................. 95
3a Patient Care Quality & Patient Safety as a Function of Human Rights........................... 95
3ai Defining Quality in Health Care ......................................................................................... 95
Patient Safety ......................................................................................................................... 96
Clinical Outcomes & Process .............................................................................................. 100
Patient Satisfaction .............................................................................................................. 105
Cost ...................................................................................................................................... 108
3aii Provision of Quality Health Care as a Human Right ................................................. 109
Human Right to Quality Care .............................................................................................. 110
Ethical Responsibilities of Health Care Organizations ...................................................... 113
3b Organizational Responsibility for Health Care Quality .................................................. 121
3bi Organizational Moral Agency ....................................................................................... 121
Organizational Identity and Moral Authority ..................................................................... 121
vi
Organizational Mission, Vision and Values ........................................................................ 126
3bii Organizational Obligations to Health Care Quality and Patient Safety .................. 129
Promoting Quality Care ...................................................................................................... 129
Protecting Patient Safety ..................................................................................................... 133
Chapter 4: Social Determinants of Health.............................................................................. 149
4a Social Determinants of Health & Cultural Competency .................................................. 149
4aii Ethical Challenges to Organizational Policy Stemming from Social Determinants of Health ...................................................................................................................................... 150
Diversity............................................................................................................................... 151
Barriers to Access ................................................................................................................ 157
4aii Developing Normative Ethics in a Multicultural Society through Human Rights Principles ................................................................................................................................ 160
Secular and Religious Bioethics .......................................................................................... 160
Human Rights ...................................................................................................................... 160
4aiii Organizational Policy focused on Cultural Competency to address Social Determinants of Health & Improve Quality ....................................................................... 165
Organizational Policy Focused on Cultural Competency ................................................... 165
Social Determinants of Health & Quality of Care .............................................................. 172
4b Social Determinants and Shared Decision-Making .......................................................... 180
4bi Applying Clinical Ethics within Health Care Organizations through Shared Decision-Making.................................................................................................................................... 180
What is Shared Decision-Making? ...................................................................................... 181
Informed Consent: The Roles of the Health Care Organization, the Physician, the Patient and the Surrogate ................................................................................................................ 182
4bii Addressing Social Determinants of Health through Organizational Policy focused on Shared Decision-Making ....................................................................................................... 190
Socioeconomic Status, Race, Ethnicity, Culture and Language.......................................... 193
Geographic Location and Access ........................................................................................ 195
Chapter 5: Medical Futility and Rationing ............................................................................ 204
5a Medical Futility .................................................................................................................... 204
5 ai Defining Medical Futility ............................................................................................... 205
The Role of the Patient or Surrogate ................................................................................... 207
The Role of the Health Care Provider ................................................................................. 209
aii Social Determinants of Health - Bias & Influence on Futility Assessments ............... 213
vii
Justice .................................................................................................................................. 214
The Role of Ethics Committees ............................................................................................ 217
5b Resource Allocation versus Rationing in Health Care ..................................................... 220
5bi Rationing .......................................................................................................................... 220
Justifications for Rationing in Health Care ........................................................................ 220
The Rationing Process ......................................................................................................... 223
5bii Ethical Resource Allocation .......................................................................................... 225
Goals and Tolerable Costs .................................................................................................. 225
Developing a Framework for Resource allocation ............................................................. 230
Chapter 6: Organizational Policy Framework for Resource Allocation ............................. 240
6a Resource allocation .............................................................................................................. 240
6 ai Assessing Fairness & Value ........................................................................................... 240
Fairness (Equity & Justice) ................................................................................................. 240
Value (Cost versus Benefit) ................................................................................................. 245
6aii Medical Futility and End-Of-Life Care ....................................................................... 248
Medical Intervention with Little or no Benefit .................................................................... 248
End of Life Care .................................................................................................................. 253
6b Resource Allocation Framework: Process, Methods, Assessment & Evaluation .......... 257
6bi Process & Methods ......................................................................................................... 257
Process for Resource allocation .......................................................................................... 257
Roles of the Provider, Patient and Ethics Committee ......................................................... 262
6bii Assessment & Evaluation .............................................................................................. 265
Assessing Resource Allocation ............................................................................................ 265
Evaluating Resource Allocation Organizational Policy ..................................................... 267
Chapter 7. Conclusion .............................................................................................................. 275
Appendix A ................................................................................................................................ 285
Appendix B ................................................................................................................................ 286
Bibliography .............................................................................................................................. 287
1
Chapter 1: Introduction
A framework for resource allocation in the face of resource limitations is needed for
ethical health care organizational policy development, implementation and evaluation. The need
for this framework is supported by human rights principles, maximization of patient care quality,
and equitable treatment for all communities and individuals. The thesis of this dissertation is to
present an ethical framework for organizational resource allocation in health care to enable
organizations to develop sound policy when facing finite or constrained resources.
A population’s need for health services often exceeds the availability of critical
resources. When this occurs, health care organizations are compelled to allocate resources in
terms of which services they will provide and who they will to serve. The need for health care
resource allocation is increasingly prevalent in these settings, yet there has been a gap in
commonly accepted guidelines for making these decisions. Ethical debate on issues such as
rationing and medical futility have attempted to address this gap but un til now have posed
inadequate solutions. At the core of this problem lies the moral obligations of health care
organizations.
Unanswered questions on how to allocate scarce resources in health care settings are
often left to either bedside decision-making or, at best, the organizational policy level. Yet, there
is little attention and no consensus on how organizational policy should address resource
allocation in health care. An ethically sound framework is needed to guide policy development
for resource allocation within health care organizations.
In addition, a more comprehensive study of concepts tied to moral obligations of health
care organizations is needed in terms of human rights, health disparities, and patient care quality.
2
Until now, human rights literature has largely focused on obligations of governments and rarely
addresses which obligations organizations may have to protect or promote the human right to
health. This dissertation seeks to address the gaps in literature about the moral obligations of
health care organizations to protect human rights and develop equitable resource allocation
policies. The purpose of the dissertation is to establish an ethical framework for organizational
resource allocation in health care.
The dissertation title is, “An Ethical Framework for Organizational Resource Allocation
for Patient Services in Health Care.” The purpose is to present an ethical framework to facilitate
ethical decisions by organizations about policy regarding health care resource allocation for
patient services. The ethical framework reflects the design of the chapters in the dissertation, as
follows. The ethical framework focuses upon pivotal components that organizations must
integrate when making ethical decisions about policy regarding resource allocation for patient
services. There are three pivotal components in the ethics framework: respect for human rights in
health care (chapter 2); the meaning of quality care for patients (chapter 3); and the social
determinants of health (chapter 4). These components constitute the ethical framework of the
dissertation in the sense that human rights in health care provides a foundation for integrating
individual and social perspectives as presented in the quality of patient care and in the social
determinants of health. In other words, the integration of these pivotal components (human
rights, patient care quality, social determinants of health) presents an ethics framework for
organizational decision-making about policy regarding resource allocation. To illustrate the
relevance of the ethics framework, it is applied to the complex topic of medical futility and
rationing (chapter 5) and then it is explained in a policy perspective to guide organizational
decision making (Chapter 6).
3
Access to quality health care is a human right, based on principles of equity, respect for
human vulnerability and social responsibility. Unfortunately, inequalities in health care due to
race, ethnicity, culture, socioeconomic status, and access to health care can prevent individuals
from realizing this right. Health care organizations have a duty to address these inequalities via
their express moral agency, and begin to do so by facilitating cultural competency and promoting
shared decision-making.
Cultural competency and shared decision-making are important tools to promote health
equity and human rights but, especially within the context of finite healthcare resources, health
care organizations need additional and even more robust guidelines for addressing inequalities.
Presently, health care organizations lack a commonly accepted framework for assessing benefits
and allocating resources to protect equitable health care access. There is a need for a framework
focused on resource allocation within the confines of limited health care resources.
The framework for resource allocation should involve all stakeholders, including
physicians, patients and ethics committees where needed. Within this structure, the patient first
presents their values and goals, and the physician then provides an intervention’s intended
outcome, benefit and likelihood. The ethics committee or consultant works as a moderator when
there are communication barriers or value conflicts between the physician and patient.
Most importantly, in this resource allocation framework, the patient values and goals are
at the front and center of the decision-making process. This framework will help to achieve the
goals of equitable access healthcare, thus protecting the human right to equitable quality health
care.
CHAPTER TWO explains the foundations of health care as a human right based on
principles of equity, respect for human vulnerability and social responsibility. First, the right to
4
healthcare is established and explained in terms of equity. Respect for human vulnerability and
social responsibility are then explained as the moral foundations for healthcare as a human right.
Human rights are based on the intrinsic dignity of human beings and should be afforded
to every person on the planet with no exceptions. Human rights encompass protections for all
human beings so that all persons can achieve self-determination. Health is a human right because
it is a prerequisite for any human to act freely and access to quality health care is a prerequisite
for health. Access to quality health care is therefore a prerequisite for humans to achieve the
right to self-determine and live freely.
Health and health care are requirements for participation in a democratic society since
they are requirements for functional ability. Realizing this right to health is influenced by many
factors. These factors include: insurance coverage, public versus private funding, the link
between social inequalities and health, access, health disparities, and resource allocation.1 To
operationalize a right to health, these issues need to be addressed through adequate and equitable
access to health care.
Health has emerged as a human right over the past century. Notable declarations on
human rights and health include the Universal Declaration of Human Rights, the International
Covenant on Economic, Social and Cultural Rights, and the Universal Declaration on Bioethics
and Human Rights. In 1948, the Universal Declaration of Human Rights outlined equal and
unalienable rights of all human beings founded in freedom, justice, peace, and inherent human
dignity, including a provision outlined in Article 25: “Everyone has the right to a standard of
living adequate for the health and well-being of himself and of his family, including food,
clothing, housing and medical care and necessary social services, and the right to security in the
5
event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in
circumstances beyond his control.”2
Additional clarification on the right to health was established in the 1966 UN General
Assembly International Covenant on Economic, Social and Cultural Rights. This covenant
recognized that all humans have equal and unalienable rights, including rights to self-
determination, to be free from discrimination of any kind – including discrimination based on
gender and race, to work, to have safe work conditions, to have fair wages, to enjoy an adequate
standard of living – which includes freedom from hunger, to education, to take part in cultural
life, and to achieve the highest attainable standard of physical and mental health.3
Further, the 2005 UNESCO Universal Declaration on Bioethics and Human Rights
defined human rights as related to health and included principles of human dignity and human
rights, benefit and harm, autonomy and individual responsibility, consent, persons without the
capacity to consent, respect for human vulnerability and personal integrity, privacy and
confidentiality, equality, justice and equity, non-discrimination and non-stigmatization, respect
for cultural diversity and pluralism, solidarity and cooperation, social responsibility, sharing of
benefits, protecting future generations, and protection of the environment, the biosphere and
biodiversity.4 Although the foundation of the right to health has been laid, there is still a need for
these rights be clarified in terms of positive and negative obligations to availability, accessibility,
acceptability and quality of health care.
The meaningful realization to the right to health includes obligations to both the positive
right to health and a negative right to health. The positive right to health means that there is a
positive obligation to protect health access and informed decision-making, while the negative
right to health means that there is an obligation to avoid interference with health access and
6
informed decision-making.5 These obligations should be explained with a consideration for real
costs and benefits, as well as a structure for resource allocation that is universal (rather than
culturally and economically relative.)6
The availability, accessibility, acceptability and quality of health care relies in large part
on health care financing. It must be noted that universal affordable health coverage has not been
achieved by private, for-profit providers or insurance in any North American country, so states
(and tax dollars) have become responsible for filling in the gaps to cover poor and seriously ill
through public programs.7 Health care organizations are thus constrained by the availability of
both the insurance market and government resources to provide equitable care for all individuals.
Health equity means empowering people, particularly socially disadvantaged groups, to
eliminate systematic health inequities and unfair differences that are socially produced, and is
essential to the right to health since health and agency have a mutually reinforcing relationship.8
This means that a person without agency is likely to have poor health outcomes, while poor
health diminishes a person’s agency. Health equity can be considered in terms of horizontal
equity and vertical equity. Horizontal equity explains that those with equal need should be
treated equally, while vertical equity explains that those with different needs should be treated
differently.9
Horizontal equity demands that individuals who are equal should be treated equally. An
appeal to horizontal equity must first define which individuals are determined to be equal and
thus should be treated equally.10 Individuals can have equal needs for different reasons. Multiple
dimensions of health care access, including geographic distribution of resources and financial
barriers to care, have been shown to influence health system horizontal equity in terms of health
service use.11
7
The availability of health services is important determinant of health, so health care
resource allocation should be based on equitable and fair distribution.12 Specifically, health
equity could be promoted through improved access, support for primary care, enhanced health
information technology, payment model reform, national quality strategy, and monitoring of
disparities.13 To achieve horizontal equity, individuals with equal needs should have the ability
to meaningfully access an equal amount and type of health services and goods. To achieve
vertical equity, those with different needs should be able to access a different amount and type of
health services and goods.
Health equity is socially patterned and dependent on hierarchies of economic resources,
social resources, power and prestige.14 Different persons have different needs based on these
hierarchies and social patterns. Individuals and communities with greater needs should receive
greater health resources according to the concept of vertical equity. This can be further
conceptualized as empowering individuals and communities to make decisions and use health
services.15 This empowerment should be a policy objective at the national, state and
organizational level as measured by policy outcomes.16
Equitable access means that there should be no unjustified difference in the amount and
quality of health care one individual has over another. Social inequalities should particularly be
addressed to eliminate inequitable health outcomes, since social inequalities are closely related to
health inequality.17 Social inequalities contribute significantly to the manifestation of human
vulnerability and demand social responsibility from non-vulnerable members of the population
in accordance with human rights protections.
The principles of respect for human vulnerability and social responsibility are most
relevant to health and human rights and explain the organizational obligations to protect or
8
promote the human right to health. Vulnerability is a common human experience, although the
degree of vulnerability that humans face varies greatly. Social responsibility describes the
obligations that humans have toward one another, especially toward other more vulnerable
humans. These two principles combined create the foundation for health as a human right. A
respect for human vulnerability is a foundational element of the right to health. All humans are
vulnerable in some capacity based on the mortal human condition, although some humans face
the extra burden of special vulnerability.
Human vulnerability is inextricable from health care since it is the very state in which
individuals need health care services. Respect for human vulnerability recognizes that all humans
will at some point(s) in their lives be vulnerable. Some human vulnerabilities are given greater
prominence in health care than others. This prominence given to specific vulnerabilities reflects
social views on which behaviors are personally controllable, which separates social perception of
sinners versus victims.18 Framing vulnerabilities within social contexts and structural inequalities
will help to clarify which behaviors are truly controllable and which are impossible or very
difficult to avoid based on a person’s social, political, or economic context.
There is a connection between all humans based on their common vulnerability, however
some humans face greater vulnerabilities than others and deserve special protection. Individuals
and groups with special vulnerability are at risk for poor health status and unmet healthcare
needs due to multifactorial and interacting risk factors, especially those related to inability to pay
for healthcare services – including low income, inadequate insurance coverage, and lack of
regular source of care.19 Vulnerabilities become compounded when a person is born into a
structural system of marginalization. The material and psychological stresses of social
inequalities and marginalization during periods of development can cause physiological changes
9
that form the basis of a child’s ability to cope with future sources of vulnerability.20 The
disparities in access to health services between those with special vulnerability versus those who
do not are largely based on socioeconomic factors.
Based on the intrinsic dignity of human beings, there is an explicit social responsibility to
protect marginalized groups and individuals, meaning that health resources should be allocated
for the vulnerable.21 Furthermore, protection of vulnerable groups and individuals is good for
social systems and communities as a whole, not only for the vulnerable person under protection.
Lack of opportunity experienced by the vulnerable leads to degradation of the entire social
environment, meaning that attention to vulnerable groups contributes to general safety and
quality of life for the entire community.22 An indicator for overall social harmony and
community well-being is then the degree to which the vulnerable are cared for and protected.
Vulnerable persons or groups should have special protection since they have a greater
likelihood of being wronged due to inherited characteristics such inability to avoid exploitation,
susceptibility to harm, or lack of access.23 Vulnerable individuals are disadvantaged in their
ability to advocate for themselves, so society has an obligation to protect and advocate for them.
This means that individuals, groups and organizations within a society have a social
responsibility to those who are vulnerable.
Social responsibility in health care describes the moral responsibility to take care of those
who are vulnerable in a society based on the nature of humans as social beings. Health care
organizations have moral obligations rooted in social relationships that they participate in,
especially related to access to quality health care, access to adequate nutrition and water, living
conditions and the environment, marginalization and exclusion of any person or persons, and
poverty.24 Because a health care organization benefits from the vulnerabilities of individuals and
10
groups within the social system that it is integrated with, it also has obligations to those who are
vulnerable.
In addition, health professionals engage in social contracts with patients, where they are
expected to put the interests the patient first, an expectation that is founded in justice when freely
agreed upon by all participating parties.25 The social relationship between the health care
professional and patient necessitate mutual responsibilities between both parties.
The social dimension of health care leads to social responsibility of hospitals and health
care delivery organizations, and is carried out by adequate corporate governance plus corporate
strategy where organizational values meet obligations to maximize available resources.26
Corporate social responsibility is especially important as a strong predictor of clinical
governance effectiveness, including high standards of care, transparent responsibility, and
accountability.27
CHAPTER THREE will discuss patient care quality as a function of human rights, and
describe the responsibility of health care organizations to protect health care quality and patient
safety. Patient care quality is a function of human rights. For humans to be able to meaningfully
exercise their human rights, they must be healthy and vice versa. This section will first define
quality in health care and then discuss how it is inextricably connected with human rights.
Quality in health care encompasses patient safety, clinical outcomes, clinical processes,
patient satisfaction and cost. Patient safety involves avoiding harm to patients as part of their
medical care. This includes avoiding medical error. Medical errors can cost billions of dollars in
annual cost to the US health system.28
Quality in health care encompasses the health outcomes and associated processes that
patients experience in the health care setting and is often measured in terms of outcomes and
11
process measures. Process and outcomes measures each have strengths and weaknesses. Process
measures are direct, easy to interpret, and sensitive to differences in care quality, though they do
not reflect all aspects of care like outcomes measures, while outcomes measures include potential
inconsistencies with data collection and difficulty of proper risk adjustment are major
disadvantages.29 Efficiency is also a component of outcome and process methods. A method that
incorporates multiple, dynamic variables including resources, time periods, patient groups and
uncertainty of treatment paths could help to identify bottlenecks and improve hospital
efficiency.30
Both process and outcomes are important components of health care quality.
Process and outcome measures are often guided by governmental regulatory programs and payor
financial incentives. While regulatory policies and financial incentives can support health care
quality, they can also present barriers to quality if they are poorly designed. For example, poorly
aligned or fragmented financial incentives can impinge on the patient’s awareness of value or fail
to adequately address provider accountability.31 Likewise, governmental regulatory bodies can
fail to support health care quality if they are not well-designed. Thus, the health care
organization plays a crucial role in facilitating and ensuring quality patient care processes and
outcomes.
Patient satisfaction and patient-reported outcomes are also an important component of
health care quality. Patient-reported factors such as current behaviors, baseline health-related
quality of life, disease progression or regression, and treatment effects can help clinicians target
interventions to improve care quality.32 Patients can also report their satisfaction with health care
services to indicate the quality of care provided.
12
Although there are many factors that can influence patient satisfaction, a comprehensive
approach that includes various service elements - such as multiple data sources to drive
improvement, accountability for service quality, service consultation and improvement tools,
service values and behavior, education and training, ongoing monitoring and control, and
recognition and reward - could be the most effective in improving patient perception of
excellence.33 This approach can also include attention physician communication, staff demeanor
and empathy, facility quality, nursing care, housekeeping, food, technical services, and access to
care.34 In addition, factors such as reputation of the physician, reputation of the healthcare
organization, health plan affiliation, and appointment availability are important to patients when
selecting a provider.35 Patient satisfaction, such as satisfaction with nursing and staff care, can
also influence a patient's willingness to recommend and willingness to return to a provider.36
Cost is also an important aspect of health care quality due to the finite nature of health
care resources. When costs are too high, access and availability of resources diminish. In
addition, allocating resources toward health care produces opportunity cost for other socially
beneficial services.37 In the United States, government (taxpayer) funding accounts for almost
two thirds of health expenditures, which includes spending on public employee health benefits,
tax subsidies to private health spending, and direct government payments to Medicare, Medicaid
and the Veterans Health Administration.38 This means that high health care costs can reduce or
eliminate resources for other public services that may benefit the well-being of the population.
In the era of cost-containment, health care organizational leadership have an imperative to take
medical management approaches with a goal of achieving the best outcomes for the lowest cost,
and eliminating inappropriate or unnecessary variation in care.39
13
Health care costs can be influenced by many factors, but it should be noted no singular
reason can be blamed for high health care costs in the United States. Overutilization, for
example, has been named as an important reason for rising healthcare costs in the US, but should
not be overemphasized. High utilization of certain services, such as primary care, may actually
have a much higher benefit to cost ratio, even though high utilization of other specialty services
may yield low return on investment.40 Cost drivers are impacted by risk factors of patients like
age and case mix and while cost and quality are interconnected, the relationship between cost
and quality is not always the same.41
The cost of complying with the right to quality health care should also be mentioned
since it is related to the likelihood of an organization or government compliance with positive
rights to health. For example, the likelihood of a state complying with the Convention on the
Rights of a Child immunization protocol is dependent on capacity to meet associated
bureaucratic costs such as building a primary care delivery system, setting up and maintaining
appropriate incentives, and monitoring performance.42
Quality health care is a human right. In general, human rights discourse has involved a
growing awareness of rights related to health, including considerations for its associated complex
ethical and legal dimensions such as cultural relevance, regional indicators, individual versus
communitarian values, equality of access, and resource allocation.43 Though this discourse is an
important first step to integrating health and human rights, explaining health as a human right
lacks an important degree of precision. This discourse should instead be framed in terms of
quality health care as a human right, which both encompasses and more adequately defines
obligations to protect the right to health.
14
Human rights can improve the effectiveness of quality care at the physician-patient level
when the physician incorporates the patient's will and interests into the interaction, thus
respecting the patient's individual dignity and rights.44 A human rights-based approach can also
help health care project leaders to pre-emptively address socioeconomic issues and potential
violations of rights, uncover design and implementation issues that impact access to
interventions, expand the breadth of outcome variables to measure success, and provide
opportunities for greater inclusion and project reach.45 Health and human rights-based claims of
justice can be used to support the protection and promotion of the functional capabilities required
for the exercise of positive freedom.46
The basic rights to health and health care traditionally have fallen into three domains: the
basic moral domain, the legally enforceable political domain, and the international domain (or
domain of relations between different political societies.)47 These three domains –
individual/moral, political/legal, and global – generally provide the existing framework for
human rights and health discourse. This framework lacks crucial domain in health and human
rights discourse, however: the organizational domain. The organizational domain exists as a
layer between the basic moral domain and the political domain, and is an essential missing piece
to this framework. The health care organization is the functional domain is where the right to
health is effectuated.
Health care organizations should facilitate quality through an ethics lens. Using ethical
standards as a foundation for developing quality improvement activities can help to prevent
inadvertently causing harm, wasting resources, or contributing to inequalities.48 Specifically,
quality in health care should be approached from a human rights perspective to ensure that health
care delivery is equitable, respect for human vulnerability is maintained and organizational social
15
responsibility is realized. This can be accomplished by involving stakeholder dialogue and
empowerment of the poor, of communities, and of consumers when developing the relationship
between corporate operations and human rights.49
The essential responsibilities of health care organizational leadership include setting clear
direction, building the right leadership team, and creating the right culture.50 Organizational
leadership should also work with clinical teams in both the inpatient and outpatient settings to
ensure that there are resources and a structural foundation to support ethical decision-making.51
Leaders of health care organizations should also focus on organizational culture since culture can
influence how effective a health care organization is at achieving its goals.52
Organizations can incur cost related to ethical conflicts including both direct and indirect
costs associated with operations, legal issues, and marketing and public relations.53 This can
further exacerbate problems created by poor quality since fewer resources may infringe upon the
ability to make quality improvements. The organizational domain is where the right to quality
health care, and therefore the right to health are realized. Organizations can be held accountable
to moral obligations related to these rights based on principles of organizational moral agency.
Specifically, health care organizations have moral obligations to protect patient safety and ensure
quality of care.
An organization’s moral authority and identity, including its mission, vision, and values,
combine and result in an organization’s moral agency. Health care organizations have moral
agency based on their unique identity and moral authority. Organizational identity, including
organizational structure, represents the context in which a healthcare leader can accomplish the
mission of the organization.54 Corporate conscience is expressed as moral agency that manifests
in its mission-focused organizational traditions, policies, rules and leadership action.55 The
16
operational effectiveness of achieving this mission can then be measured through indicators of
availability, quality and efficiency.56
Moral agency explains that a health care organization has a metaphysical personality and
existence distinct from its specific members, with rules of governance and hierarchical structure,
resulting in unique, distinct shared, intentions and coordinated behaviors, carried out by parties
who make decisions and carry out actions on behalf of the organization.57 The health care
organization is not a random amalgamation of the assets and individual persons who facilitate
and use its services, but a unique entity that is larger than the sum of these parts. This is reflected
in the unique expressed missions and values of health care organizations.
An organization’s mission statement is an expression of the unique moral identity of the
organization. An organization’s mission statement can improve its focus, such as increasing
attention on innovation or improving the balance between financial goals and the non-profit
mission.58 Likewise, expressed organizational values demonstrate the unique moral identity of
the organization. Organizational values in health care are important assets to innovation, growth,
ethical decision-making and quality, and can have a positive impact organizational success.59
Organizational values are the moral underpinnings of its decision-making – describing what
agents acting on behalf of the organization ought to do, and can motivate an organization’s
agents to arrive at intentional action based on the needs of collective.60 The organization has
agents which enact its mission and values. These agents are expected to act on behalf of the
organization, based on the organization’s unique identity.
Based on moral agency through expressed moral authority and organizational identity,
health care organizations have specific obligations to promote health care quality and protect
patient safety. Organizations have obligations to promote and protect quality health care and
17
patient safety, based on their role in carrying out the human right to health. The organization
itself facilitates processes and outcomes of quality health care, based on organizational attributes
that influence quality such as executive management, culture, organizational design, incentive
structures, and information technology management.61 The organization itself is the driver of
quality health care, based on these traits. Health care organizational obligations include
protecting patients and staff members right to privacy, facilitating informed consent, facilitating
quality improvement activities, and reviewing potential safety risks to patients (such as
randomized designs, novel treatments, involvement of researchers, delayed feedback of
monitoring and external funding.)62
Organizations should also monitor quality outcomes to promote continuous quality
assurance and improvement. These quality measures should have a strong evidence base,
accurately reflect whether the intended process has been provided, be closely tied to the intended
improved outcome, and have little or no chance of creating unintended adverse consequences.63
Organizations should take a proactive approach to addressing potential ethical conflicts
related to patient safety, ideally collaborating with ethics committee members, clinical staff, and
providers to develop ethically grounded protocols, and establish systematic processes to ethical
practice and ultimately promote the goal of quality.64 This can be carried out by the health care
organization’s agents, including executive leadership. For example, executive leadership can
improve quality and safety by creating a culture of transparency, cooperativeness, inclusiveness,
and shared responsibility by focusing on communication, systems, teams, and accountability.65
The health care organization should use an integrated approach to addressing issues related to
quality in health care. The institute of medicine has advocated for systems approach, focusing on
interconnection of problems with the root cause analysis focusing on system flaws.66 Health care
18
quality encompasses the interconnected components of the health care organization. These
components cannot be separated and need to be addressed as at the whole organization level to
adequately address health care quality. Quality health care is a human right carried out by health
care organizations.
CHAPTER FOUR describes the importance of social determinants of health related to
health care organizational policy. Social determinants of health – including race, ethnicity,
culture, socioeconomic status and barriers to access – have a serious impact on health outcomes.
Although addressing social determinants of health can be particularly challenging when facing
diversity in cultures, beliefs, and backgrounds, health care organizations can mitigate the
inequalities related to social determinants of health by focusing policy on cultural competency
and shared decision-making. Health equity can be achieved at least partially by reducing
disparities in health and securing access to highest possible quality of health care for all
individuals and groups.67
Social determinants of health include key components of race, ethnicity, culture,
socioeconomic status, and access to health care. Organizational policy founded in cultural
competency can help to alleviate some of the inequalities presented by these factors.
Social determinants of health present ethical challenges to organizational policy. The two
most salient challenges are diversity and barriers to access. A diverse population with varied
races, ethnic backgrounds and belief systems can lead to major challenges in health care.68 When
individuals in a society have varying backgrounds and belong to diverse social, religious and
cultural groups, it can be difficult to create a health care system that applies to all individuals
fairly. This is further complicated by (real or perceived) weaknesses of traditional bioethics
itself, which often faces criticism that it is based on western principles, methods, and philosophy
19
and that it is lacking in its attempt to address the role of social and cultural values – specifically
those that define health, illness, pain, and death.69 If those analyzing ethical challenges to health
care hold a specific world view, they may not be able to seriously consider other legitimate
perspectives from other cultural groups. Barriers to accessing health care in a multicultural
setting include: Demographics – such as age, ethnicity, religion, and education level; Culture –
including worldview/perceptions in life, time orientation, and primary language; and Health care
system barriers – including access to care, financial resources, and poor doctor-patient
communication.70
Barriers to access can exacerbate health disparities and negatively impact quality of care.
Health care access barriers, including financial, structural and cognitive barriers, can result in
inadequate screening, late presentation to care, and lack of treatment resulting in poor health
outcomes and health disparities.71 Individuals and communities often face multiple barriers to
access simultaneously. For example, those with low health literacy are also more likely to be
uninsured.72
There are many interventions that organizations can engage in to improve health access
for the populations they serve. For example, health care access could be improved for low
income people by creating leadership coalitions, building shared information systems, seeking
catalyst funding, filling in gaps of service such as prescription drugs, creating care models that
achieve improved health outcomes, enlisting private physicians to volunteer for uninsured and
underinsured people, and achieving sustainable funding for care through state/local government,
business and community partnerships.73 In general, inequalities should be addressed through
interventions that make it an easy choice to engage in healthy behaviors.74 Removing barriers to
20
access is an important first step to making healthy choices easy and moving toward equity in
health care.
In a multicultural society such as in the United States, there are varying approaches to
establishing ethical standards and boundaries for bioethics. These approaches can include secular
and religious bioethics. The approach which can be used as a normative ethic is based on human
rights. Secular and religious bioethics are offer competing theories of how to define “right” or
“good” in health care. Many secular philosophers believe that reason can deem certain behaviors
ethical or unethical through thought process, social negotiation, experience, sense or
perception.75 Religious theories are also common when approaching ethical theory in health care.
Religious theories tend to rely on revealed truth or natural theology. Revealed religious truth or
“faith knowledge” means that members of a particular religion have knowledge of true morality
that has been revealed to them through their religious doctrine.76 Natural theology is a theory of
religious ethics that states that there are natural ways of knowing moral norms, and that these
norms are revealed by reason.77 These varying and often conflicting theories offer a range of
approaches to health care ethics in multicultural societies.
Choosing one of these normative moral theories – secular or religious – may not be
possible because, in a multicultural society, individuals will have conflicting values,
backgrounds and cultural beliefs preventing them from agreeing on what is right and what is
wrong. Morally diverse individuals and groups can attempt to engage with each other through
bridging foundational differences, but should keep in mind that agreement about moral a
philosophy does not necessarily mean that it is justified, i.e. consensus can arise out of pressure
from power structures or mindless conformity rather than true moral justification.78 Using
methodologies of bridging theories and justifying actions can be helpful when navigating
21
through differing moral beliefs within a multicultural society, however human rights should
always serve as the foundation for this discourse.
Human rights principles are principles that apply to everyone simply for the reason that
they are part of humankind. Human rights can and should be applied to health care ethics
because of its universal application and ability to create a guideline or framework for ethical
decision-making. The United Nations’ Universal Declaration on Human Rights provides
common standards for fundamental human rights to be universally protected, and includes
articles outlining these established rights.79 These rights include respect for human vulnerability
and justice, which should be applied in the multicultural health care setting.
Organizational policy focused on cultural competency can address social determinants of
health and thus improve quality and health equity. Human rights serve as a foundation for ethical
policy within health care organizations. In order to begin addressing the ethical challenges
presented by a multicultural society – including race, ethnicity, culture, socioeconomic status,
and barriers to access – health care organizations should develop a policy of cultural
competency. When founded in human rights, this organizational policy can impact social
determinants of health and ultimately improve quality of care. Cultural competence falls into
three buckets – organizational cultural competence, systematic cultural competence, and clinical
cultural competence, each with their own unique challenges such as problems with lack of
diversity in health care leadership and workforce, poorly designed systems for diverse patient
populations, and poor cross-cultural communication between providers and patients.80
Organizational policy can address each of these buckets. This policy can focus on interventions
such as evidence-based cost control, improving financial incentive structure, providing
22
meaningful interpretation services, using community health workers, incorporating multi-
disciplinary teams, and improving patient education and patient empowerment.81
All levels of the health care system, including payers and regulatory bodies, should
emphasize cultural competence at a system level, striving to provide culturally and linguistically
appropriate health care services, which will ultimately impact access, utilization, and health
status of minorities.82 Health care organizations such as hospitals and health care systems should
work together with payers and regulatory bodies to create policy that provides the most benefit
for the patient population. Health care organizations can look to the National Standards for
Culturally and Linguistically Appropriate Services in Health and Health Care (National CLAS
Standards) for guidance on developing cultural competency policies. The CLAS standards
include provisions for governance, leadership, workforce, communication and language
assistance, engagement, continuous improvement and accountability – with the goals of
decreasing health disparities, enhancing health equity, and improving quality.83 These can be
used as a foundation for policy development and implementation within health care
organizations to foster culturally competent care.
Social determinants of health can have a significant impact on access to quality care and
quality outcomes. For example, Asian immigrants in the United States are less likely to have
health insurance or use health care services, and face barriers to quality health care including
linguistic discordance, health-related beliefs and cultural incompetency of health systems, issues
with accessing health services, and discrimination in the health care system.84 Multiple social
determinants of health can also intersect to affect quality outcomes. For example, age and race
can intersect to create disparities among those in the elderly population, with racial minorities
demonstrating worse health outcomes than whites of the same age group.85 Solutions to address
23
this problem are multifactorial and include developing a diverse healthcare workforce that
reflects the diversity of the patient population.86
Health care organizations can also address health disparities caused by social
determinants of health by merging foundations of clinical and organizational ethics to develop
policy focused on shared decision-making. Clinical ethics can be applied through organizational
policy to mitigate social determinants of health through on shared decision-making between the
physician and the patient. Policy to support shared decision-making should focus on two key
features: ethics consultation and the informed consent process.
Shared decision-making can be used by health care providers and patients to determine
the best treatment option based on the patient’s values, beliefs and goals. The essential elements
of this process are: recognizing that decision needs to be made, understanding the evidence, and
incorporating patient values.87 Shared decision-making can improve care quality, improve patient
experience, and reduce costs – including the cost of surgeries and hospital admissions – through
low-cost interventions such as telephone health coaching.88 When patients have a chance to
consider the options along with their risks and benefits as they relate to their personal values,
beliefs and goals, they have the information that they need to make a truly informed decision.
Organizations can provide physicians with the education and tools to help patients participate in
shared decision-making. The organization should focus on policy related to informed consent
and ethics consultation to support shared decision-making and reduce barriers that physicians
and patients face when making decisions. This can be operationalized through policy focused on
informed consent and ethics consultation.
Informed consent is a crucial component of shared decision-making. Informed consent
encompasses legal rules, ethical doctrine, and an interpersonal processes based upon rights and
24
duties, as well as consequences of actions, and is intended to protect bodily integrity and
autonomy.89 It is the mechanism in which patient autonomy and right to make decisions about
one’s own body and health are fulfilled. Legal or institutionally effective rules and requirements
of informed consent are intended to create conditions that enable autonomous authorization and
promote shared decision-making.90 The health care organization, the physician, the patient have
important roles in this process. Informed consent is based on decision-making capacity and it
should be assumed that a patient has decision-making capacity unless there is proof otherwise.91
When a patient does not have decision-making capacity, surrogate decision-makers should be
able to understand the patient's values and apply them to treatment decisions.92 Health care
organizations should develop policies and procedures to protect vulnerable patients without
surrogates that include the development of practical guides for clinical providers, increasing the
number of patients who complete a medical power of attorney document, and supporting
rigorous efforts to search for a surrogate decision-maker.93
Shared decision-making as supported by organizational policy can reduce health
disparities related to social determinates of health. Informed consent and ethics consultation can
support this process. Patients are influenced by risks and resources in their physical and social
environments often related to multiple dimensions of race, ethnicity and socioeconomic status,
which combine and accumulate to influence health outcomes.94 Socioeconomic status is one
dimension that significantly affects a patient’s ability to effectively interact with the health care
system. Patients with a disadvantaged socioeconomic status tend to have worse outcomes
compared to those in more advantaged situations. For example, long term breast cancer survival
outcomes could be improved by targeting patients with low socioeconomic status.95 Through
shared decision-making as carried out through the informed consent process and ethics
25
consultation, the burdens of health disparities related to disadvantaged socioeconomic status can
be mitigated.
Race, ethnicity, culture and language can also have a significant impact on health
outcomes and shared decision-making. Although often intertwined with socioeconomic status,
race, ethnicity, culture and language present unique barriers to shared decision-making within the
health care setting. For example, a high socioeconomic position may not necessarily alleviate the
toxic effects of discrimination related to the psychosocial conditions and stresses tied to minority
status.96 These factors should be considered as presenting unique challenges to clinical ethics and
the shared decision-making process.
The location in which a patient lives can significantly affect their ability to access health
care and engage in shared decision-making. This can be especially true for individuals and
groups who live in rural areas. Barriers to receiving health services in rural areas can include
lack of knowledge of available resources, cost of services, difficulty navigating the system,
difficulty finding qualified providers, and proximity to services.97 These factors can all influence
a patient’s ability to engage in shared decision-making. A patient’s geographical location can
affect their access to health-related services as well. For example, a neighborhood food
environment can have a significant impact on health and accessibility to healthy food can be
affected by physical distance from food sources, personal mobility, and environmental barriers
such as safety concerns, and facilitators such availability of public transit service.98 These factors
influence health outcomes for groups and individuals in disadvantaged geographic areas,
including many rural areas. In addition, health care needs such as housing and transportation can
be affected by geographic location and availability of health resources. For example, adults with
multiple sclerosis, can face barriers to obtaining specialized housing, transportation, and
26
resources needed to manage their progressive and episodic illness.99 Socioeconomic factors
could also act in concert with geographical barriers to health care from both individual and
neighborhood level factors.100 Informed consent and ethics consultation solutions could help to
alleviate some of these barriers to accessing health care and achieving quality health outcomes
through shared decision-making.
CHAPTER FIVE explores concepts of medical futility and rationing as foundations for
resource allocation. Health care resources are finite, yet demand for needed health resources are
virtually unlimited. This leads to the unfortunate reality that some people will be afforded access
to the health care resources they need, while others will not. Compounding this problem,
political discussions surrounding rationing, including claims of so-called “death panels,” have
hindered the ability of policy-makers to have meaningful discourse about fair dissemination of
limited health care resources. As a result, many of these resources have been distributed
sporadically with little or no ethical grounding.
Based on human rights that demand equitable, quality health care to all, health care
organizations have an obligation to develop more ethically sound ways of employing their
limited resources. These decisions should be founded in justice, and should not be influenced by
non-medically relevant patient characteristics such as race, ethnicity, culture, socioeconomic
status and geographical proximity to health care providers.
The basis for discourse surrounding resource allocation has heretofore focused on two
key concepts: medical futility and rationing. These two key concepts will be examined as
background concepts for resource allocation. Resource allocation will then be explained as a
concept which transcends the existing understandings of futility and rationing.
27
Futile medical care can be thought of as a treatment or medical intervention where there
is no benefit, or where the amount of benefit achieved is judged as not worth its costs. When
unpacking this broad definition, however, flaws with applications for the medical futility concept
emerge. There is much ambiguity when exploring expected or possible outcome(s), and also how
likely those outcome(s) are to occur. This leads to the real possibility of drastic differences in
opinion among stakeholders regarding the futility of a particular patient in a particular situation.
Importantly, there has been no consensus on an acceptable threshold for probability that a
treatment will achieve a patient’s goals. This can lead to violations of equity when disagreements
in medical futility among stakeholders are influenced by bias, especially when these biases are
related to social determinants of health. Opinions of futility could be susceptible to opinions on
whether specific patients are worth of a perceived high-cost, low-benefit treatment. When these
judgements are made based on any non-medically relevant criteria, they unjustified and in
violation of the right to quality health care.
To make a determination of futility in a clinical setting, a patient’s goals should be
weighed against the probability of achieving those desired outcomes. If treatment intensity has
no relationship to survival, does not improve quality of life, does not improve suffering, does not
increase chances of a faster discharge, or help the clinical team and patient meet some other
specified goal, then the treatment in question should not be offered.101 The treatment in question
would be considered to be medically futile. Although seemingly straightforward, this definition
gains complexity and has contested relevance in application. Generally speaking, there is a lack
of consensus on the criteria for futility, with related available data inconclusive and susceptible
to subjective interpretation.102 This creates an environment where medical futility is understood
28
as a vague concept, and specific guidelines for judging a case to be futile are difficult to establish
with unanimous agreement.
When it appears that a treatment may be deemed "medically futile," the provider and
patient (or surrogate) should discuss the options to determine the patient’s value system and
whether the treatment is appropriate or not for the patient.103 The role of the patient or surrogate
is to provide the values and goals of treatment option.
Futility reflects physician’s professional, not personal integrity, and goals of a futility
policy must have the ability to attract nearly universal agreement among health care providers, as
well as acknowledge political realities.104 No such universal agreement has yet been achieved.
The lack of consensus in definition among physicians themselves clouds understanding and
application of medical futility, and a clearer professional standard may be a key to provide clarity
for futility standards. As of yet, physicians nor politicians have been able to agree on
overarching, specific standards for judging medically futile interactions.
Physicians can personally avoid “futile” with patients, give patients and families time to
comprehend and express their understanding, clarify goals of care, assess whether all reasonable
options have been attempted, avoid offering options that are not medically appropriate, establish
guidelines and limits for interventions in place, and address emotional needs of patients – and
when they need support with these issues, physicians can have a patient care conference, review
steps with a colleague and/or request an ethics consult.105
Due to the problems that would come with mandating specific criteria to invoke medical
futility at the bedside, it may be more useful to apply medical futility as a foundation and
launching point for decision-making, helping to elucidate the limitations medical care.106 The
concept of medical futility could possibly help physicians develop acceptance that they are
29
powerless in some clinical situations. The concept itself then may be useful, but only as a starting
point or foundation for a benefits assessment framework to emerge.
Social determinates of health can further complicate the ethical application of medical
futility concepts, especially if bias is introduced into medical futility discussions. Serious
injustice can occur when social determinants of health, such as race, ethnicity, education,
socioeconomic status, or geographic location negatively affect a patient’s care in medical futility
cases. The potential for grave, life-or-death consequences in medical futility cases means that
bias or unequitable treatment related to medical futility decisions opens the possibility for gross
injustice. When considering medical futility judgements, two patients with a similar condition
should be treated similarly and morally immaterial facts such as race or ethnicity should be
ignored.107 Biases due to social characteristics should be avoided in order to ensure equity under
the right to quality health care.
Ethics committees serve as a resource to health care institutions and address ethical
dimensions of clinical guideline development, policy advisement, and case review, and are
required as a part of the Joint Commission for accreditation.108 They are an essential part of
ethical decision-making within organizations. Ethics committees operationalize their ethical
support for decision-making through ethics consultation, which offer a structured method to
promote ethical decision making for professionals, patients, and families.109 Ethics committees
can mediate ethical questions when they arise during the shared decision-making process.
In all questioned medical futility cases, ethics consultants and ethics committees should
look to identify biases related to social determinants of health when facilitating medical futility
discussions. In their role on the ethics committee, ethics consultants should listen for and address
unspoken biases, while focusing discussion on clinically relevant information such as risks,
30
whether the resource is scarce, complicated comorbidities such as addiction, concrete history of
non-compliance, long-term risks, psychosocial conditions, and whether the intervention will
prolong a painful dying process.110 Only medically relevant information should be included the
resolution of a medical futility conflict.
Although only medically relevant information should be considered when making a final
decision about futility, the process of determining the medical facts of the case should consider
social determinants as potential barriers to a just outcome. Ethics consultants can facilitate an
understanding of barriers that patients face to achieving a just outcome through cultural
competency and shared decision-making. Ethics committee consultations should also address
potential barriers patient shave to understanding important information related to costs and
benefits of care as compared to the patient’s goals. At times, patients make serious choices
without a full understanding of the proposed intervention. For example, Do Not Resuscitate
(DNR) patients may tend to have more concrete understanding of resuscitation, while full code
(FC) patients may tend to understand resuscitation in a more abstract sense.111 Patients should be
elevated to a place where they fully understand the benefits and costs of an intervention.
Finally, it must also be considered that biases may be entrenched within ethics committees
themselves, which organizations should attempt to avoid. Although ethics committees are used to
provide due process and a fair method for reaching resolution to a conflict, problems with this
role may occur when ethics committees do not represent the diversity of the population, have
financial ties to the hospital they serve under, or if they are reduced to a systematic process for
overriding family requests that seem unreasonable to the clinical team.112 Ethics committees
should then have mechanisms to avoid these biases, especially when dealing with cases of
medical futility. Health care ethics consultants should be able to help health are teams unpack
31
biases, especially in the protection of vulnerable, marginalized, and disempowered patients and
families, helping to equalize the power dynamic in defense of justice.113 Ethics committees
should be facilitators of just decision-making, protecting patients with special vulnerability.
Medical futility arguments are often invoked in the context of the limited resources
available in health care, thus pulled into arguments related to rationing of health care. The idea is
that, if expensive but futile interventions could be avoided, costs to the system could be saved,
and resources spent in futility could provide benefit other patients. As long as the approach is
through a lens respect for human vulnerability and social responsibility, and the application is
filtered through ethically sound policies and processes, allocation of health care resources can be
a an ethically justified way to promote equitable access to quality health care.
While rationing relies on potentially unjust, inadaptable criteria for resource allocation,
resource allocation provides a framework that can adapt to specific patient situations and
characteristics (including social determinants of health), importantly including considerations for
quality of care, patient safety, cultural competence, and shared decision-making. With quality
care equitably maximized, human rights will be protected and health care delivery will become
more ethically grounded.
Due to the reality of limited health care resources, justification for systematic rationing of
health care has been attempted, albeit in ways that have been strongly contested. There is no
consensus on who should be entrusted to make rationing decisions, nor is there any consensus on
how rationing decisions should balance equity, efficiency and efficacy when facing a scarce
health care resource.114
Rationing is typically based on specific patient characteristics, or group characteristics of
patients that are in similar situations. Where demand for a therapy is beyond the resource
32
capabilities of an organization (such as with transplantation), guidelines can be developed to
select and categorize patients for optimal use of those scarce resources with use of hierarchical
guidelines for patient selection.115 This type of rationing can only be justified when applied to
very specific situations in very specific contexts, while overarching judgements applied across
types of care are impossible to uniformly justify
Rationing discussions in the United States have focused primarily on insurance eligibility
and coverage but there is a need for more public debate on resource allocation related to financial
stability, trade-offs of cost containment versus achieving health goals, and how limited public
financing for healthcare should be.116 There is room for bias in rationing based on ability to pay
because public attitude can influence how much payers are willing to spend.117
Arguments for rationing have been made for various patient characteristics with
resistance. For example, age-based rationing has been argued as morally defensible in certain
situations, but has also been seen has ageist, discriminatory, and morally objectionable.118 Others
have argued that patient characteristics like productivity and lifestyle could be used for resource
allocation.119 Others have looked for common characteristics based on healthcare needs.
Previous use of resources for example, has been argued as a valid rationing criteria, with
justification based on protecting a basic level of benefits for all persons.120All of these criteria
have serious flaws in that there may be clearly justified exceptions to these rules, and when
exceptions to the rule are denigrations to the dignity of human lives, they should not be ignored
or discounted. In light of the controversy around rationing arguments, there has been some shift
from rationing language to language of waste avoidance, which are complimentary but not
synonymous terms.121 Waste avoidance gets more to the point of resource allocation, where
attempts are made to avoid using resources that do not add value.
33
When rationing decisions are made, it is suggested that they committees should be used,
with public input and consideration of political realities.122 While this process may work for very
specific interventions such as transplant, developing rationing policies for a larger scope of
interventions can cause major problems and also, importantly, may face insurmountable political
barriers. In addition, contentious rationing decisions can be left to the court system, but this is far
from ideal. Allowing resource allocation decisions to be made through a court appeals process
could undermine fairness by granting greater access to wealthy people, reducing transparency,
compromising predictability and tainting the public’s perception of process fairness.123
Ethical resource allocation is based on a foundation of goals and tolerable costs and is
organized through a framework for organizational policy. Ethical resource allocation will be
explained in terms of goals and tolerable costs. Goals and tolerable costs, provide the foundation
for making decisions in health care’s resource-limited settings, including but not limited to cases
of medical futility.
When facing limited resources, resource allocation should be employed through a fair
and legitimate process, with resources pulled from ineffective or low benefit treatments to be
reinvested in more effective, higher-value care. 124 A framework is needed for assessing low
benefit care versus care with high benefit, considering tolerable costs and risks to patients based
on their personal values. Patients often need a focused and accessible explanation of risk
assessment including framing of the evidence, determining their own predisposition toward risk,
the likelihood of risk occurring, possible side-effects, what is involved in each potential course of
action, and which short term and long-term risks are important to them based on their values and
goals.125 An understanding of these risks and benefits in terms of the patient’s values will create
the foundation for resource allocation policy for health care organizations.
34
The dimensions of equality that are normatively relevant need to be clearly defined since
implicitly unfair allocation will occur without the employment of explicit allocation criteria.126 A
transparent discussion is needed to determine how comparative effectiveness research can be
balanced between physician discretion, patient autonomy and system-level restrictions, with a
goal of using clinical data to inform decision-making within a flexible system responsive to the
complexity of health care.127 This resource allocation criteria can be mapped out into buckets of
feasibility, health level, health distribution, responsiveness, social and financial risk protection,
and improved efficiency.128 It will also include cost considerations since there is a need for clear,
explicit, transparent, inclusive process to determine how costs should be controlled, based on a
shared social understanding.129
A resource allocation framework will incorporate other related concepts, such as
accountability for reasonableness and evidence-based medicine, although existing concepts are
not comprehensive and must be supplemented with additional framework elements. For example,
evidence-based medicine seeks to generalize treatments, which may not be appropriate for all
individuals in an ethnoculturally diverse context such as in the United States.130 Evidence-based
medicine will work for resource allocation only within the ethical framework as described
henceforth.
CHAPTER SIX will focus on the specifics of the framework for resource allocation, and
how this framework will improve health care quality and promote human rights. This includes
addressing fairness in value assessments, the issue of medical futility, and the framework
process, methods, and evaluation mechanisms.
Resource allocation should focus on patient-directed goals, using cultural competence
and shared decision-making as tools to alleviate inequalities caused by social determinants of
35
health. Focusing on assessment of patient goals and tolerable first and foremost will ensure that
treatments are aimed at the patient’s values and goals of care. The resource allocation framework
should be founded in fairness and value. This will be demonstrated through application to
medical futility end-of-life care debate.
Fairness, based on concepts of equity and justice, as well as value will be the basis for
resource allocation assessments. The resource allocation framework will be based in fairness and
equity both on both macro (organizational policy) and micro (bedside) levels. Fair bedside
rationing is needed in some cases, such as in triage (limited provider time, limited beds, limited
staff), in situations where resources are strained or subject to fixed limits (limited blood supply,
limited flu vaccines) and when the physician has an opinion that specific intervention will not be
worth the additional human or economic cost (assessment of individual benefit, assessment of
individual cost.)131 The resource allocation framework will incorporate the need for bedside
decision-making related to resource allocation.
Fairness is related to human rights as it is crucial for respecting the dignity of all persons.
If a person circumvents evidence-based, transparent, and unbiased resource allocation through
undue influence, they unjustly deny the dignity of the patient or patients who are consequentially
deprived of that same resource.132
The resource allocation framework will also be incorporate value, but only as long as it is
tightly connected with equity and justice. Value can be determined through various approaches,
but the recommended approach as part of this framework will be robust comparative
effectiveness analysis. An in-hospital comparative effectiveness center can be used to frame
existing literature within the local context, use local evidence where there are gaps in the
36
literature, complement and strengthen national activities, adapt and implement measures locally,
and address the hospital’s own questions about quality, efficiency and effectiveness.133
The value of life is at the core of the medical futility debate. Medical futility cases are
often brought up at the end of life when interventions are prolonging life but not achieving many
or any other goals of care. Addressing medical futility is part of the resource allocation
framework because these are often the cases that provide the least benefit and some of the
highest (human and financial) costs. Often, there is conflict in medical futility cases due to
underlying, unrevealed beliefs and values that are not being addressed in the case. End-of-life
interventions can have broad, underlying social or ritualistic benefits to patients such as
addressing feelings of guilt and responsibility, reflecting upon the ambiguity between life and
death, providing a social script for letting go, and giving space to being the grieving process.134
The resource allocation model, facilitated by health care providers, staff, and ethics consultants,
can help to unearth some of these underlying issues to address the true reasons for conflict.
Medical futility should be addressed partially because of its implications for moral
distress on physicians and nurses. Repeated experiences of moral distress can have a negative
impact on quality patient care, burnout, job satisfaction, morale and can lead to exhaustion.135
Although, alternatively, moral distress could possibly reflect nursing discomfort with moral
subjectivity in some cases.136
The value of life is transcendental (which is the basis of its intrinsic dignity), finite (there
is an end to life for all living beings), priceless (one cannot put a monetary value on life), and it
is given (a person cannot create their own life).137 Since the value of life is priceless but finite,
the value of life does not depend on its length. Prolonging life is merely a benefit of treatment,
not a transcendent outcome above all others. Medical futility assessment during end-of-life care
37
should examine all benefits of treatment, not just incremental length of life added. All human life
is priceless, regardless of social value, but life is not infinite. There is no moral obligation to
spend an infinite amount of money to save all life years and provide for a virtually unlimited
demand for health care, especially at high cost with marginal benefit.138 Only patients can define
the level of benefit and cost they experience from an intervention, so their values and goals need
to be at the center of this process. Truth telling is at the core of this process. Providing false hope
goes against the professional ethic of truth telling.139 In addition, family members can suffer
psychological effects and regrets following end-of-life decision making, and the clinical team
should help to prevent this distress to the extent possible, as long as it is not at odds with the
patient’s wishes and it does not cause suffering for the patient.140
The resource allocation framework includes process, methods, assessment and
evaluation. In this section, the process for resource allocation will be developed, including roles
of the physician, patient or surrogate, and ethics committee. The resource allocation process will
have two parallel tracks. First, will be the macro track for developing policy and procedures at
the organizational level and second will be the micro track where policies and procedures will be
carried out at the bedside. Each will be consistent with and in support of the goals of human
rights and equity. A human rights framework will ensure that resource allocation includes a
meaningful democratic deliberation with a prominent focus on equality and fairness.141
The macro track will be facilitated by the organization’s ethics committee, or a similar
committee with at least one trained bioethicist. This track will be responsible for the policy
decision-making process as consistent with the accountability for reasonableness framework.
Accountability for reasonableness has been applied with some success as an ethics-based,
procedural guidance for fair resource allocation through its four conditions of relevance,
38
publicity, appeals and enforcement.142 Accountability for reasonableness is complementary to
human rights and clarifies some obligations based on human rights, with an emphasis on a
transparent process for resource allocation.143 It will help to guide a fair, transparent process
although it does lack normative fairness criteria for decision-making, which is important because
resource allocation should not only be legitimate in process but also fair in design.144A major
flaw with accountability for reasonableness is its assumption that reasonable equals fair.145 This
approach puts process over principles and avoids practical decision-making guidance for
distinguishing relevant versus irrelevant reasoning, lacking any theoretical underpinnings to the
concept of fairness.146 Although accountability for reasonableness will be incorporated into the
framework, it will not be the sole approach.
The macro track will also be responsible for consultation, developing and testing
decision-making, family support tools, and data analysis. Decision aid development for
vulnerable populations will focus on the eventual end users by assessing end user needs, pilot
testing with end user cohorts, and partnering with community-based organizations.147 This
committee will also facilitate and coordinate essential physician and staff training on cultural
competency, shared decision-making and nursing assessment for patient goals, values and risk
tolerance.
The micro track will be facilitated through shared decision-making and cultural
competency at the bedside. This process will involve either an electronic or nurse-facilitated pre-
appointment assessment of goals, values and risk tolerance. The physician will then discuss the
patient’s assessment and determine the best treatment option for the patient. Criteria will be
developed to trigger a consultation when risk is calculated to be greater than benefit for the
selected treatment. The patient will then participate in a consultation to ensure that the selected
39
treatment is aligned with the patient’s goals and values. A decision-making framework should
include the following components: identification of the need for a decision, a process for making
the decision, and an action to be taken based on the decision.148 This will be incorporated into the
bedside decision-making process.
Decision support tools as developed by the ethics committee will be used as needed at the
bedside. Decision support tools should integrate clinical practice guidelines to both patient
decision aids and deliberation support tools.149 For example, an option grid may be developed
and used. The option grid includes frequently asked questions and answers to possible treatment
options, and is used through a process of describing the goal of the grid, checking if the patient
wishes to read the grid themselves or if they want them to be read to them, handing over the grid
to the patient with a pen so that they can mark down notes and questions, creating space if they
wish to read the grid themselves, asking encouraging questions and discussions, and telling the
patient that they should take the grid with them for the opportunity to discuss options with others
more information, encouraging referral to other specific sources.150 It is useful to implement an
iterative design process that engages the end-users when developing health care decision support
tools.151 Web-based decision-making aids could help facilitate discussions between patients and
clinicians, and help patients to make informed, individualized decisions152
The provider, patient and ethics committee will all have crucial roles in the resource
allocation framework. The physician-patient interaction should be based on shared decision-
making and mutual respect. Studies suggest that there is more discordance about decision-
making preferences than concordance between health care providers and patients, although the
degree to which this discordance occurs and the reasons for disagreement require further
study.153 Although more research is needed, there is some evidence to suggest that patient-
40
centered care with interventions such as patient assessment, healthcare professional-patient
collaboration, acknowledgement of patient expertise in their own illness, education and patient
engagement, can help to reduce symptom burden, readmissions, and improve quality of life.154
Shared decision-making involves a respect for the patient perspective and strengthening the
patient-care team relationship.155 It is aligned with the goal of patient-centered care.
Patient-centered care maintains that patients should be involved in their own care and can
lead to both better outcomes and decreased cost, but it can be difficult to implement when there
are workload and workforce constraints, fragmentation of care and a destructive power dynamic
between the healthcare professional and patient.156 Patient-centeredness complements quality
measures and show the essential quality perspective of patient experience.157 Patient satisfaction
may be influenced by unrealistic expectations and poor perception of benefits and risk so
improved shared decision-making through decision aids with relevant personalized evidence-
based information can be a useful, ethically sound approach to treatment decision-making.158
Collaborative decision-making and patient-centered care may address the issue of health care
professional moral distress. Moral distress reflects health professionals’ frustration and failure to
meet moral obligations, and could be addressed by encouraging ethical action and allowing
questions to be raised and discussed.159 Often, this occurs when the health care professional must
weigh their professional obligation to the individual patient in front of them versus what is best
for the society as a whole.160 The resource allocation framework will alleviate this distress by
creating a clear structure for decision-making in these contexts. Staff will also be engaged to
empower them in the process. When the health care team is takes ownership of a process,
positive and necessary changes in culture can occur.161
41
From the patient’s perspective, patient-centered care will help to address any social
disadvantages that may be negatively impacting their health, even if they seemingly should share
personal responsibility for their health outcomes. Appeals to personal responsibility can be
problematic if incentives create inequalities based on access or reciprocity-based responsibilities
don’t allow for flexibility in the amount an individual can reasonably be expected to
contribute.162
Ethics committees will also play an important role in the framework. Ethics committees
should be embedded into the broad framework and continuous process of organizational resource
allocation, approaching ethics consultation in four stages: training, identifying scarcity-related
problems, supporting decision-making and evaluation.163
The resource allocation framework will include a robust assessment and evaluation
component. The framework will include its background and philosophical foundations, the
process for engaging in resource allocation, and mechanisms for assessment and evaluation.
Physicians should first ask about the patient’s desired goals upon admission and present possible
treatments that have a reasonable chance of achieving those goals or, alternatively, set
expectations when goals are unachievable and present alternative options for the patient to
consider.164
The framework will encompass an organizational resource allocation policy with an end-
of-life decision-making subset. Resources will be tied to specific benefits. The process will
include defining the patient’s goals, determining the patient’s tolerable costs (such as quality of
life measures or complications,) and ensuring stakeholder understanding of patient goals and
values. When specific policy needs to be developed based on scarcity of resources, a general
assessment will be performed of the benefits of the intervention and which types of patients
42
would benefit from the intervention. The process will be transparent with an appeals process. For
example, the problems associated with current approaches to Do Not Resuscitate (DNR) orders
could be addressed through better management of hospital culture, inclusion in policy
discussions, provider communication skill training, and better aligned financial incentives.165
In addition to the process for addressing general and specific resource resource
allocation, the framework will include a continuing education requirement for nurses and
physicians. Health care organizations should invest in quality communication programs to help
physicians navigate discussions around patient goals, navigating hope versus truth, making sense
of illness, refocusing on reality, encouraging patients to discuss their fears, navigating family
relationships and patient hesitations for “giving up,” as well as helping physicians to confront
their own struggle with impotence in times of futility.166 In addition, a common ethics course for
nurses and physicians could help them to develop an ethical skill set and instill in them a
confidence to exercise moral convictions, thus helping to avoid moral distress such as feelings of
powerlessness, guilt, sadness and anger.167
Finally, the ethics committee or consultant(s) will have an important role in the
framework. The ethics consultation can help to address conflicts experienced between families
and health care providers, including consideration of other’s perspectives, acknowledgement of
diversity, empathizing, and working together with involved parties to relinquish domination and
find a common ground.168
The framework will be evaluated for effectiveness. Successful resource allocation can be
evaluated based on process elements of stakeholder engagement, clarity of process, clear and
transparent information management, level of consideration for values and context, and revision
or appeals mechanism, as well as outcomes elements including stakeholder engagement, shifted
43
resources, decision-making quality, stakeholder acceptance and satisfaction and positive
externalities.169Multi-dimensional outcomes will be considered knowing that a health care
service or intervention often has interdependent resources, such as in the case of cardiothoracic
surgery where both an operating room and bed for postoperative recovery are needed to admit a
new patient.170 The management of resources will be assessed. Management of healthcare
resources should incorporate the complex behavior of natural and social systems of health care
including multiple inputs and outputs, multiple perspectives and an environment of
uncertainty.171
CHAPTER SEVEN will conclude the analysis. An organization’s moral agency assigns
its ethical obligation to protect the human right to health care, based in the foundations of equity,
respect for human vulnerability and social responsibility. This obligation is particularly
important to reduce social inequalities within health care, based on social determinants of health
including race, ethnicity, culture, socioeconomic status, and access to health care. Health care
organizations can start to address these issues by using cultural competency and shared decision-
making, but these tools must be incorporated into a larger framework to promote health care
equity within the confines of finite resources.
A framework of resource allocation puts the patient’s goals and values first, with
recommended interventions presented in response. Resource allocation can also be used be in a
broader sense when distributing specific finite resources. Based on obligations of moral agency,
health care organizations are ethically obligated provide this framework, guiding the actions of
its agents and protecting the human rights of the patients it serves.
1 Gross, Aeyal. "Is There a Human Right to Private Health Care?" The Journal of Law, Medicine & Ethics 41, no. 1 (2013): 138‐146. 2 The United Nations. Universal Declaration of Human Rights. 1948. 3 UN General Assembly, International Covenant on Economic, Social and Cultural Rights. United Nations Treaty Series, vol. 993.
1966.
44
4 United Nations Educational, Scientific, and Cultural Organization (UNESCO). Universal Declaration on Bioethics and Human
Rights. 2005. 5 Lemmens, Trudo, and Candice Telfer. "Access to Information and the Right to Health: The Human Rights Case for Clinical Trials
Transparency." American Journal of Law and Medicine 38, no. 1 (2014‐03‐06 2012): 63‐112. 6 Arras, John D., and Elizabeth M. Fenton. "Bioethics & Human Rights: Access to Health‐Related Goods." The Hastings Center
Report 39, no. 5 (Sep/Oct 2009): 27‐38. 7 Kinney, Eleanor D. "Realization of the International Human Right to Health in an Economically Integrated North America." The
Journal of Law, Medicine & Ethics 37, no. 4 (2009): 807‐818. 8 World Health Organization: Commission on Social Determinants of Health, 2005‐2008. A conceptual framework for action on
the social determinants of health. 2007. 9 Tao, Yi, Kizito Henry, Qinpei Zou, and Xiaoni Zhong. "Methods for Measuring Horizontal Equity in Health Resource Allocation: A
Comparative Study." Health Economics Review 4, no. 1 (Aug 2014): 1‐10. 10 Galbiati, Roberto, and Pietro Vertova. "Horizontal Equity." Economica 75, no. 298 (2008): 384‐91. 11 Gusmano, Michael K., Daniel Weisz, and Victor G. Rodwin. "Achieving Horizontal Equity: Must We Have a Single‐Payer Health
System?". Journal of Health Politics, Policy & Law 34, no. 4 (2009): 617‐33. 12 Bayoumi, Ahmed M. "Equity and Health Services." Journal of Public Health Policy 30, no. 2 (2009): 176‐82. 13 Fiscella, K. "Health Care Reform and Equity: Promise, Pitfalls, and Prescriptions." Annals of Family Medicine 9, no. 1 (2011):
78‐84. 14 Marmot, Michael. "Achieving Health Equity: From Root Causes to Fair Outcomes." The Lancet 370, no. 9593 (Sep 29‐Oct 5,
2007): 1153‐63. 15 Gulliford, Martin. "Modernizing Concepts of Access and Equity." [In English]. Health Economics, Policy and Law 4, no. 2 (Apr
2009): 223‐30. 16 Erdman, Joanna N. "Human Rights in Health Equity: Cervical Cancer and Hpv Vaccines." American Journal of Law and
Medicine 35, no. 2/3 (2009): 365‐87. 17 Potvin, Louise. "Promoting Health and Equity: A Theme That Is More Relevant Than Ever." Global Health Promotion 22, no. 1
(2015): 3‐5. 18 Mechanic, D., and J. Tanner. "Vulnerable People, Groups, and Populations: Societal View." Health Affairs 26, no. 5 (2007):
1220‐30. 19 Shi, Leiyu DrPH M. P. A. M. B. A., and Gregory D. PhD Stevens. "Vulnerability and Unmet Health Care Needs." Journal of
General Internal Medicine 20, no. 2 (2005): 148‐54. 20 Furumoto‐Dawson, A., S. Gehlert, D. Sohmer, O. Olopade, and T. Sacks. "Early‐Life Conditions and Mechanisms of Population
Health Vulnerabilities." Health Affairs 26, no. 5 (2007): 1238‐48. 21 Ruof, Mary C. "Vulnerability, Vulnerable Populations, and Policy." Kennedy Institute of Ethics Journal 14, no. 4 (2004): 411‐25. 22 Mechanic, David, and Jennifer Tanner. "Vulnerable People, Groups, and Populations: Societal View." Health Affairs 26, no. 5
(2007): 1220‐30. 23 Tavaglione, N., A. K. Martin, N. Mezger, S. Durieux‐Paillard, A. Francois, Y. Jackson, and S. A. Hurst. "Fleshing out Vulnerability."
Bioethics 29, no. 2 (2015): 98‐107. 24 International Bioethics Committee of UNESCO. On Social Responsibility and Health. 2010. 10‐39. 25 Welie, Jos V. "Social Contract Theory as a Foundation of the Social Responsibilities of Health Professionals." Medicine, Health
Care, and Philosophy 15, no. 3 (2012): 347‐55. 26 Brandão, Cristina, Guilhermina Rego, Ivone Duarte, and Rui Nunes. "Social Responsibility: A New Paradigm of Hospital
Governance? Health Care Analysis 21, no. 4 (2013): 390‐402. 27 Trong Tuan, Luu. "Clinical Governance, Corporate Social Responsibility, Health Service Quality, and Brand Equity." Clinical
Governance 19, no. 3 (2014): 215‐234. 28 Van Den Bos, Jill, Karan Rustagi, Travis Gray, Michael Halford, Eva Ziemkiewicz, and Jonathan Shreve. "The $17.1 Billion
Problem: The Annual Cost of Measurable Medical Errors." Health Affairs 30, no. 4 (2011): 596‐603. 29 Mant, Jonathan. "Process Versus Outcome Indicators in the Assessment of Quality of Health Care." International Journal for
Quality in Health Care 13, no. 6 (2001): 475. 30 Hulshof, Peter J., Richard J. Boucherie, Erwin W. Hans, and Johann L. Hurink. "Tactical Resource Allocation and Elective
Patient Admission Planning in Care Processes." Health Care Management Science 16, no. 2 (Jun 2013): 152‐66. 31 Nix, Kathryn A., and John S. O'Shea. "Improving Healthcare Quality in the United States: A New Approach." Southern Medical
Journal 108, no. 6 (2015): 359‐63. 32 Fung, Constance H., and Ron D. Hays. "Prospects and Challenges in Using Patient‐Reported Outcomes in Clinical Practice."
Quality of Life Research 17, no. 10 (Dec 2008): 1297‐302. 33 Kennedy, Denise M. M. B. A., Richard J. M. D. Caselli, Leonard L. PhD Berry, and Pooja Fache Mishra. "A Roadmap for
Improving Healthcare Service Quality/Practitioner Application." Journal of Healthcare Management 56, no. 6 (Nov/Dec 2011): 385‐400; discussion 00‐2.
45
34 Naidu, Aditi. "Factors Affecting Patient Satisfaction and Healthcare Quality." International Journal of Health Care Quality
Assurance 22, no. 4 (2009): 366‐81. 35 Abraham, Jean PhD, Brian M. D. Sick, Joseph M. H. A. Anderson, Andrea M. H. A. Berg, Chad M. H. A. Dehmer, Amanda M. H.
A. Tufano, and Kevin T. Fache Marx. "Selecting a Provider: What Factors Influence Patients' Decision Making?" Journal of Healthcare Management 56, no. 2 (Mar/Apr 2011): 99‐114; discussion 14‐5.
36 Otani, Koichiro PhD, Brian Waterman, Kelly M. Faulkner, Sarah PhD Boslaugh, W. Claiborne M. D. Dunagan, and Sue PhD Ehinger. "How Patient Reactions to Hospital Care Attributes Affect the Evaluation of Overall Quality of Care, Willingness to Recommend, and Willingness to Return/Practitioner Application." Journal of Healthcare Management 55, no. 1 (Jan/Feb 2010): 25‐37; discussion 38.
37 Gusmano, Michael K. "Do We Really Want to Control Health Care Spending?". Journal of Health Politics, Policy & Law 36, no. 3 (2011): 495‐500.
38 Himmelstein, David U., and Steffie Woolhandler. "The Current and Projected Taxpayer Shares of Us Health Costs." American Journal of Public Health 106, no. 3 (2016): 449‐52.
39 Lofgren, Richard, Michael Karpf, Jay Perman, and Courtney M Higdon. "The Us Health Care System Is in Crisis: Implications for Academic Medical Centers and Their Missions." Academic Medicine 81, no. 8 (2006): 713‐20.
40 Levine, Deborah J., and Jessica Mulligan. "Overutilization, Overutilized." Journal of Health Politics, Policy & Law 40, no. 2 (2015): 421‐37.
41 Kruse, Marie, and Jan Christensen. "Is Quality Costly? Patient and Hospital Cost Drivers in Vascular Surgery." Health Economics Review 3, no. 1 (Oct 2013): 1‐13.
42 Gauri, Varun. "The Cost of Complying with Human Rights Treaties: The Convention on the Rights of the Child and Basic Immunization." The Review of International Organizations 6, no. 1 (Mar 2011): 33‐56.
43 Bennett, Belinda. "Introduction: Health and Human Rights." International Journal of Law in Context 7, no. 3 (Sep 2011): 271‐72.
44 Puras, Dainius. "Human Rights and the Practice of Medicine." (2017): Public Health Reviews 38. 45 Smith‐Estelle, Allison, Laura Ferguson, and Sofia Gruskin. "Applying Human Rights‐Based Approaches to Public Health:
Lessons Learned from Maternal, Newborn and Child Health Programs." Etude de la Population Africaine 29, no. 1 (2015): 1713‐28.
46 Ram‐tiktin, Efrat. "The Right to Health Care as a Right to Basic Human Functional Capabilities." Ethical Theory and Moral Practice 15, no. 3 (Jun 2012): 337‐51.
47 Eleftheriadis, Pavlos. "A Right to Health Care." 268‐85: Wiley‐Blackwell, 2012. 48 Lynn, Joanne, Mary Ann Baily, Melissa Bottrell, Bruce Jennings, Robert J. Levine, Frank Davidoff, David Casarett, et al. "The
Ethics of Using Quality Improvement Methods in Health Care." Review Article. Annals of Internal Medicine 146, no. 9 (2007): 666‐W161.
49 Mena, Sébastien, Marieke de Leede, Dorothée Baumann, Nicky Black, Sara Lindeman, and Lindsay McShane. "Advancing the Business and Human Rights Agenda: Dialogue, Empowerment, and Constructive Engagement." Journal of Business Ethics 93, no. 1 (Apr 2010): 161‐88.
50 Souba, W. W. "The 3 Essential Responsibilities: A Leadership Story." Arch Surg 145, no. 6 (Jun 2010): 540‐3. 51 Barina, Rachelle. "Ethics Outside of Inpatient Care: The Need for Alliances between Clinical and Organizational Ethics." HEC
Forum 26, no. 4 (Dec 2014): 309‐23. 52 Khorakian, Alireza, Yaghoob Maharati, and Hanzaleh Zeydvand Lorestany. "Virtuousness and Effectiveness in Hospitals: The
Moderating Role of Organizational Culture." Advances in Management and Applied Economics 6, no. 4 (2016): 45‐66. 53 Nelson, William A. PhD, William B. M. D. M. B. A. Weeks, Justin M. Campfield, and Les EdD Lfache MacLeod. "The
Organizational Costs of Ethical Conflicts." Journal of Healthcare Management 53, no. 1 (Jan/Feb 2008): 41‐52; discussion 52‐3.
54 Russo, Fabrizio. "What Is the Csr's Focus in Healthcare?" [In English]. Journal of Business Ethics 134, no. 2 (Mar 2016): 323‐34. 55 Fleming, David A. "The Moral Agency of Physician Organizations: Meeting Obligations to Advocate for Patients and the
Public." Annals of Internal Medicine 163, no. 12 (2015): 918‐21 4p. 56 Gomes, Carlos F., Mahmoud M. Yasin, and Yousef Yasin. "Assessing Operational Effectiveness in Healthcare Organizations: A
Systematic Approach." International Journal of Health Care Quality Assurance 23, no. 2 (2010): 127‐40. 57 Arnold, Denis G. "Corporate Moral Agency." Midwest Studies In Philosophy 30, no. 1 (2006): 279‐91. 58 Robert, E. McDonald. "An Investigation of Innovation in Nonprofit Organizations: The Role of Organizational Mission."
Nonprofit & Voluntary Sector Quarterly 36, no. 2 (2007): 256‐81. 59 Helmig, Bernd, Vera Hinz, and Stefan Ingerfurth. "Valuing Organizational Values: Assessing the Uniqueness of Nonprofit
Values." Voluntas: International Journal of Voluntary & Nonprofit Organizations 26, no. 6 (2015): 2554‐80. 60 Watson, George W., R. Edward Freeman, and Bobby Parmar. "Connected Moral Agency in Organizational Ethics." Journal of
Business Ethics 81, no. 2 (2008): 323‐41.
46
61 Glickman, Seth W., Kelvin A. Baggett, Christopher G. Krubert, Eric D. Peterson, and Kevin A. Schulman. "Promoting Quality:
The Health‐Care Organization from a Management Perspective." International Journal for Quality in Health Care 19, no. 6 (2007): 341‐8.
62 Baily, Mary Ann, Melissa Bottrell, Joannne Lynn, and Bruce Jennings. "A Hastings Center Special Report: The Ethics of Using Qi Methods to Improve Health Care Quality and Safety." The Hastings Center Report 36, no. 4 (2006): s1‐s40.
63 Chassin, Mark R. M. D. M. P. P. M. P. H., Jerod M. PhD Loeb, Stephen P. PhD Schmaltz, and Robert M. M. D. Wachter. "Accountability Measures ‐‐ Using Measurement to Promote Quality Improvement." The New England Journal of Medicine 363, no. 7 (2010): 683‐8.
64 Nelson, William A., Julia Neily, Peter Mills, and William B. Weeks. "Collaboration of Ethics and Patient Safety Programs: Opportunities to Promote Quality Care." HEC Forum 20, no. 1 (2008): 15‐27.
65 Daly, Bobby, and Elizabeth A. Mort. "A Decade after to Err Is Human: What Should Health Care Leaders Be Doing?" Physician Executive 40, no. 3 (2014): 50‐2, 54.
66 Khushf, George, James Raymond, and Charles Beaman. "The Institute of Medicine's Reports on Quality and Safety: Paradoxes and Tensions." HEC Forum 20, no. 1 (2008): 1‐14.
67 Beal, Anne C. "High‐Quality Health Care: The Essential Route to Eliminating Disparities and Achieving Health Equity." Health Affairs 30, no. 10 (2011): 1868‐71.
68 Charlesworth, M. "Don't Blame the 'Bio'‐‐Blame the 'Ethics': Varieties of (Bio)Ethics and the Challenge of Pluralism." J Bioeth Inq 2, no. 1 (2005): 10‐7.
69 Mbugua, K. "Respect for Cultural Diversity and the Empirical Turn in Bioethics: A Plea for Caution." J Med Ethics Hist Med 5 (2012): 1.
70 Huff, Robert M., Michael V. Kline, and Darleen V. Peterson, eds. Health Promotion in Multicultural Populations: A Handbook for Practitioners and Students. Third edition. ed. Thousand Oaks: Sage, 2015, chapter 1.
71 Carrillo, J. Emilio M. D. M. P. H., Victor A. M. P. A. Carrillo, Hector R. B. A. Perez, Debbie M. D. M. P. H. Facp Salas‐Lopez, Ana M. D. M. P. H. Natale‐Pereira, and Alex T. B. A. Byron. "Defining and Targeting Health Care Access Barriers." Journal of Health Care for the Poor and Underserved 22, no. 2 (May 2011): 562‐75.
72 Sentell, Tetine. "Implications for Reform: Survey of California Adults Suggests Low Health Literacy Predicts Likelihood of Being Uninsured." [In English]. Health Affairs 31, no. 5 (May 2012): 1039‐48.
73 Felland, Laurie E., Paul B. Ginsburg, and Gretchen M. Kishbauch. "Improving Health Care Access for Low‐Income People: Lessons from Ascension Health's Community Collaboratives." Health Affairs 30, no. 7 (Jul 2011): 290‐8.
74 Wallace, Steven P. "Equity and Social Determinants of Health among Older Adults." Generations 38, no. 4 (2014): 6‐11. 75 Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Washington D.C.: Georgetown
University Press, 2012. 139‐148 76 Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Washington D.C.: Georgetown
University Press, 2012. 107‐129 77 Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Washington D.C.: Georgetown
University Press, 2012. 130‐136 78 Thompson, P. "Seeking Common Ground in a World of Ethical Pluralism: A Review Essay of Moral Acquaintances:
Methodology in Bioethics by Kevin Wm. Wildes, S.J." HEC Forum 16, no. 2 (2004): 120‐128. 79 http://www.un.org/en/universal‐declaration‐human‐rights/ 80 Betancourt, Joseph R., Alexander R. Green, and J. Emilio Carrillo. "Cultural Competence in Health Care: Emerging Frameworks
and Practical Approaches." The Commonwealth Fund, 2002. 81 Smedley, Brian D., Adrienne Y. Stith, and Alan R. Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in
Health Care. Washington: The National Academies Press, 2002:189‐198. 82 Chin, J. L. "Culturally Competent Health Care." Public Health Reports 115, no. 1 (2000): 25‐33. 83 https://www.thinkculturalhealth.hhs.gov/content/clas.asp 84 Clough, Juliana M. P. H., Sunmin ScD M. P. H. Lee, and David H. ScD M. A. Chae. "Barriers to Health Care among Asian
Immigrants in the United States: A Traditional Review." Journal of Health Care for the Poor and Underserved 24, no. 1 (Feb 2013): 384‐403.
85 Dilworth‐Anderson, Peggye, Geraldine Pierre, and Tandrea S. Hilliard. "Social Justice, Health Disparities, and Culture in the Care of the Elderly." Journal of Law, Medicine & Ethics 40, no. 1 (Spring2012 2012): 26‐32.
86 Betancourt, Joseph R., Sarah Beiter, and Alden Landry. "Improving Quality, Achieving Equity, and Increasing Diversity in Healthcare: The Future Is Now." Journal of Best Practices in Health Professions Diversity: Education, Research & Policy 6, no. 1 (Spring 2013): 903‐17.
87 Légaré, France, and Holly O. Witteman. "Shared Decision Making: Examining Key Elements and Barriers to Adoption into Routine Clinical Practice." Health Affairs 32, no. 2 (Feb 2013): 276‐84.
88 Veroff, David, Amy Marr, and David E. Wennberg. "Enhanced Support for Shared Decision Making Reduced Costs of Care for Patients with Preference‐Sensitive Conditions." Health Affairs 32, no. 2 (Feb 2013): 285‐93.
47
89 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 1‐13 90 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 15‐17 91 Mitchell, Melanie A. "Assessing Patient Decision‐Making Capacity: It's About the Thought Process." Journal of Emergency
Nursing 41, no. 4 (Jul 2015): 307‐12. 92 Scheunemann, Leslie P., Robert M. Arnold, and Douglas B. White. "The Facilitated Values History: Helping Surrogates Make
Authentic Decisions for Incapacitated Patients with Advanced Illness." American Journal of Respiratory and Critical Care Medicine 186, no. 6 (2012): 480‐6.
93 Smith, Martin L., and Catherine L. Luck. "Desperately Seeking a Surrogate‐for a Patient Lacking Decision‐Making Capacity." Narrative Inquiry in Bioethics 4, no. 2 (Summer 2014): 161‐69.
94 Williams, David R., Naomi Priest, and Norman B. Anderson. "Understanding Associations among Race, Socioeconomic Status, and Health: Patterns and Prospects." Health Psychology 35, no. 4 (2016): 407‐11 5p.
95 Keegan, Theresa H. M., Allison W. Kurian, Kathleen Gali, Tao Li, Daphne Y. Lichtensztajn, Dawn L. Hershman, Laurel A. Habel, Bette J. Caan, and Scarlett L. Gomez. "Research and Practice. Racial/Ethnic and Socioeconomic Differences in Short‐Term Breast Cancer Survival among Women in an Integrated Health System." American Journal of Public Health 105, no. 5 (2015): 938‐46.
96 Molina, Kristine, and Yenisleidy Simon. "Everyday Discrimination and Chronic Health Conditions among Latinos: The Moderating Role of Socioeconomic Position." Journal of Behavioral Medicine 37, no. 5 (2014): 868‐80 13p.
97 Solovieva, Tatiana I., and Richard T. Walls. "Barriers to Traumatic Brain Injury Services and Supports in Rural Setting." Journal of Rehabilitation 80, no. 4 (2014): 10‐18 9p.
98 Bader, Michael D. M., Marnie Purciel, Paulette Yousefzadeh, and Kathryn M. Neckerman. "Disparities in Neighborhood Food Environments: Implications of Measurement Strategies." Economic Geography 86, no. 4 (2010): 409‐30.
99 Roessler, Richard T., Malachy Bishop, Phillip D. Rumrill, Kathleen Sheppard‐Jones, Brittany Waletich, Veronica Umeasiegbu, and Lisa Bishop. "Specialized Housing and Transportation Needs of Adults with Multiple Sclerosis." Work 45, no. 2 (2013): 223‐35.
100 Beard, J. R., N. Tomaska, A. Earnest, R. Summerhayes, and G. Morgan. "Influence of Socioeconomic and Cultural Factors on Rural Health." Australian Journal of Rural Health 17, no. 1 (2009): 10‐15 6p.
101 Courtwright, Andrew. "Who Is "Too Sick to Benefit"." The Hastings Center Report 42, no. 4 (Jul/Aug 2012): 41‐7. 102 Gabbay, Ezra, Jose Calvo‐broce, Klemens B. Meyer, Thomas A. Trikalinos, Joshua Cohen, and David M. Kent. "The Empirical
Basis for Determinations of Medical Futility." Journal of General Internal Medicine 25, no. 10 (Oct 2010): 1083‐9. 103 Rubin, Susan B. "If We Think It's Futile, Can't We Just Say No?" [In English]. HEC Forum 19, no. 1 (Mar 2007): 45‐65. 104 Tomlinson, Thomas. "Futility Beyond Cpr: The Case of Dialysis." HEC Forum 19, no. 1 (Mar 2007): 33‐43. 105 Gallagher, Colleen M., and Ryan F. Holmes. "Handling Cases of 'Medical Futility'." HEC Forum 24, no. 2 (Jun 2012): 91‐8. 106 Tonelli, Mark R. "What Medical Futility Means to Clinicians." HEC Forum 19, no. 1 (Mar 2007): 83‐93. 107 Rosoff, Philip M. "Institutional Futility Policies Are Inherently Unfair." HEC Forum 25, no. 3 (Sep 2013): 191‐209. 108 Farber Post, Linda, Jeffrey Blustein, and Nancy Neveloff Dubler. Handbook for health care ethics committees. Baltimore:
Johns Hopkins University Press. 2015 (2nd edition). 5‐8 109 Farber Post, Linda, Jeffrey Blustein, and Nancy Neveloff Dubler. Handbook for health care ethics committees. Baltimore:
Johns Hopkins University Press. 2015 (2nd edition). 223‐227 110 Dudzinski, Denise M. "Commentary: In the Interest of Fairness." Cambridge Quarterly of Healthcare Ethics 22, no. 4 (Oct
2013): 401‐2. 111 Downar, James, Tracy Luk, Robert W. Sibbald, Tatiana Santini, Joseph Mikhael, Hershl Berman, and Laura Hawryluck. "Why
Do Patients Agree to a "Do Not Resuscitate" or "Full Code" Order? Perspectives of Medical Inpatients." Journal of General Internal Medicine 26, no. 6 (Jun 20111): 582‐7.
112 Truog, Robert D. M. D. "Tackling Medical Futility in Texas." [In English]. The New England Journal of Medicine 357, no. 1 (Jul 2007): 1‐3.
113 Stone, John R. "Commentary: Ethics and Medical Judgment: Whose Values? What Process?" Cambridge Quarterly of Healthcare Ethics 22, no. 4 (Oct 2013): 404‐6.
114 Cohen, Alan B. "The Debate over Health Care Rationing: Déjà Vu All over Again?" Inquiry ‐ Excellus Health Plan 49, no. 2 (Summer 2012): 90‐100.
115 Moosa, Mohammed Rafique, Jonathan David Maree, Maxwell T. Chirehwa, and Solomon R. Benatar. "Use of the 'Accountability for Reasonableness' Approach to Improve Fairness in Accessing Dialysis in a Middle‐Income Country." PLoS One 11, no. 10 (Oct 2016).
116 Teutsch, Steven M. D. M. P. H., and Bernd M. A. PhD Rechel. "Ethics of Resource Allocation and Rationing Medical Care in a Time of Fiscal Restraint ‐ Us and Europe." Public Health Reviews 34, no. 1 (2012): 1‐10.
117 Smith, Dylan M., Laura J. Damschroder, Scott Y. H. Kim, and Peter A. Ubel. "What's It Worth? Public Willingness to Pay to Avoid Mental Illnesses Compared with General Medical Illnesses." Psychiatric Services 63, no. 4 (Apr 2012): 319‐24.
48
118 Fleck, Leonard M. "Just Caring: In Defense of Limited Age‐Based Healthcare Rationing." Cambridge Quarterly of Healthcare
Ethics 19, no. 1 (Jan 2010): 27‐37. 119 Valtonen, Hannu. "Patient Characteristics and Fairness." The European Journal of Health Economics: HEPAC 10, no. 2 (May
2009): 179‐86. 120 Huesch, Marco D. "One and Done? Equality of Opportunity and Repeated Access to Scarce, Indivisible Medical Resources."
BMC Medical Ethics 13 (2012): 11. 121 Brody, Howard M. D. PhD. "From an Ethics of Rationing to an Ethics of Waste Avoidance." The New England Journal of
Medicine 366, no. 21 May 2012): 1949‐51. 122 Callahan, Daniel. "Rationing: Theory, Politics, and Passions." The Hastings Center Report 41, no. 2 (Mar/Apr 2011): 23‐7. 123 Ladin, Keren PhD, and Douglas W. M. D. PhD Hanto. "Rationing Lung Transplants ‐‐ Procedural Fairness in Allocation and
Appeals." The New England Journal of Medicine 369, no. 7 (2013): 599‐601. 124 Mitton, Craig, Francois Dionne, and Cam Donaldson. "Managing Healthcare Budgets in Times of Austerity: The Role of
Program Budgeting and Marginal Analysis." Applied Health Economics and Health Policy 12, no. 2 (Apr 2014): 95‐102. 125 Price, Bob. "Discussing Risk with Patients." Nursing Standard (2014+) 31, no. 33 (2017): 53. 126 Rogowski, Wolf H., Scott D. Grosse, Jörg Schmidtke, and Georg Marckmann. "Criteria for Fairly Allocating Scarce Health‐Care
Resources to Genetic Tests: Which Matter Most?" European Journal of Human Genetics : EJHG 22, no. 1 (Jan 2014): 25‐31. 127 Peppercorn, Jeffrey, S. Yousuf Zafar, Kevin Houck, Peter Ubel, and Neal J. Meropol. "Does Comparative Effectiveness
Research Promote Rationing of Cancer Care?" Lancet Oncology 15, no. 3 (Mar 2014): e132‐8. 128 Tromp, Noor, and Rob Baltussen. "Mapping of Multiple Criteria for Priority Setting of Health Interventions: An Aid for
Decision Makers." BMC Health Services Research 12 (2012): 454. 129 Fleck, Leonard M. "Choosing Wisely." Cambridge Quarterly of Healthcare Ethics 25, no. 3 (Jul 2016): 366‐76. 130 Whitley, Rob PhD, Cecile M. D. Rousseau, Elizabeth PhD Carpenter‐Song, and Laurence J. M. D. Frcpc Kirmayer. "Evidence‐
Based Medicine: Opportunities and Challenges in a Diverse Society." Canadian Journal of Psychiatry 56, no. 9 (Sep 2011): 514‐22.
131 Hurst, Samia A., and Marion Danis. "A Framework for Rationing by Clinical Judgment." Kennedy Institute of Ethics Journal 17, no. 3 (Sep 2007): 247‐66.
132 Shuman, Andrew G., Mary S. McCabe, Joseph J. Fins, and Paul T. Menzel. "It's Who You Know." The Hastings Center Report 42, no. 2 (Mar/Apr 2012): 12‐13,48.
133 Umscheid, Craig A., Kendal Williams, and Patrick J. Brennan. "Hospital‐Based Comparative Effectiveness Centers: Translating Research into Practice to Improve the Quality, Safety and Value of Patient Care." Journal of General Internal Medicine 25, no. 12 (Dec 2010): 1352‐5.
134 Mohammed, Shan, and Elizabeth Peter. "Rituals, Death and the Moral Practice of Medical Futility." Nursing Ethics 16, no. 3 (May 2009): 292‐302.
135 Özden, Dilek, Serife Karagözolu, and Gülay Yildirim. "Intensive Care Nurses' Perception of Futility: Job Satisfaction and Burnout Dimensions." Nursing Ethics 20, no. 4 (Jun 2013): 436‐47.
136 Repenshek, Mark. "Moral Distress: Inability to Act or Discomfort with Moral Subjectivity?" Nursing Ethics 16, no. 6 (Nov 2009): 734‐42.
137 Sulmasy, Daniel P. "Speaking of the Value of Life." Kennedy Institute of Ethics Journal 21, no. 2 (Jun 2011): 181‐99. 138 Fleck, Leonard M. "The Costs of Caring: Who Pays? Who Profits? Who Panders?" The Hastings Center Report 36, no. 3
(May/Jun 2006): 13‐7. 139 Thompson, Richard M. D. "Self‐Serving Altruism: Not an Oxymoron." Physician Executive 33, no. 6 (Nov/Dec 2007): 82‐3. 140 Truog, Robert D. M. D. "Is It Always Wrong to Perform Futile Cpr?" The New England Journal of Medicine 362, no. 6 (Feb
2010): 477‐9. 141 Yamin, Alicia Ely, and Ole Frithjof Norheim. "Taking Equality Seriously: Applying Human Rights Frameworks to Priority Setting
in Health." Human Rights Quarterly 36, no. 2 (May 2014): 296‐324,504‐05. 142 Byskov, Jens, Bruno Marchal, Stephen Maluka, Joseph M. Zulu, Salome A. Bukachi, Anna‐Karin Hurtig, Astrid Blystad, et al.
"The Accountability for Reasonableness Approach to Guide Priority Setting in Health Systems within Limited Resources ‐ Findings from Action Research at District Level in Kenya, Tanzania, and Zambia." Research Policy and Systems 12 (2014): 49.
143 Gruskin, Sofia J. D. M. I. A., and Norman PhD Daniels. "Justice and Human Rights: Priority Setting and Fair Deliberative Process." American Journal of Public Health 98, no. 9 (Sep): 1573‐7.
144 Rid, A. "Justice and Procedure: How Does "Accountability for Reasonableness" Result in Fair Limit‐Setting Decisions?" Journal of Medical Ethics 35, no. 1 (Jan 2009): 12.
145 Nunes, Rui, and Guilhermina Rego. "Priority Setting in Health Care: A Complementary Approach." Health Care Analysis : HCA 22, no. 3 (Sep 2014): 292‐303.
146 Kieslich, Katharina, and Peter Littlejohns. "Does Accountability for Reasonableness Work? A Protocol for a Mixed Methods Study Using an Audit Tool to Evaluate the Decision‐Making of Clinical Commissioning Groups in England." BMJ Open 5, no. 7 (2015).
49
147 Dugas, Michele, Marie‐Eve Trottier, Dansokho Selma Chipenda, Vaisson Gratianne, Thierry Provencher, Heather Colquhoun,
Joyce Dogba Maman, et al. "Involving Members of Vulnerable Populations in the Development of Patient Decision Aids: A Mixed Methods Sequential Explanatory Study." BMC Medical Informatics and Decision Making 17 (2017).
148 Stafinski, Tania, Devidas Menon, Christopher McCabe, and Donald J. Philippon. "To Fund or Not to Fund PharmacoEconomics 29, no. 9 (Sep 2011): 771‐80.
149 van der Weijden, Trudy, Antoine Boivin, Jako Burgers, Holger J. Schünemann, and Glyn Elwyn. "Clinical Practice Guidelines and Patient Decision Aids. An Inevitable Relationship." Journal of Clinical Epidemiology 65, no. 6 (Jun 2012): 584‐9.
150 Seal, Robert P., Jeremy Kynaston, Glyn Elwyn, and Philip E. M. Smith. "Using an Option Grid in Shared Decision Making." Practical Neurology 14, no. 1 (Feb 2014): 54.
151 Garvelink, Mirjam M., Julie Emond, Matthew Menear, Nathalie Briere, Adriana Freitas, Laura Boland, Maria Margarita Becerra Perez, et al. "Development of a Decision Guide to Support the Elderly in Decision Making About Location of Care: An Iterative, User‐Centered Design." Research Involvement and Engagement 2 (2016).
152 Elkin, Elena B., Valerie H. Pocus, Alvin I. Mushlin, Tessa Cigler, Coral L. Atoria, and Margaret M. Polaneczky. "Facilitating Informed Decisions About Breast Cancer Screening: Development and Evaluation of a Web‐Based Decision Aid for Women in Their 40s." BMC Medical Informatics and Decision Making 17 (2017).
153 Harrison, Mark, Katherine Milbers, Marie Hudson, and Nick Bansback. "Do Patients and Health Care Providers Have Discordant Preferences About Which Aspects of Treatments Matter Most? Evidence from a Systematic Review of Discrete Choice Experiments." BMJ Open 7, no. 5 (2017).
154 Kane, P. M., F. E. Murtagh, K. Ryan, N. G. Mahon, B. McAdam, R. McQuillan, C. Ellis‐smith, et al. "The Gap between Policy and Practice: A Systematic Review of Patient‐Centered Care Interventions in Chronic Heart Failure." Heart Failure Reviews 20, no. 6 (Nov 2015): 673‐87.
155 Bunn, Frances, Claire Goodman, Jill Manthorpe, Marie‐Anne Durand, Isabel Hodkinson, Greta Rait, Paul Millac, et al. "Supporting Shared Decision‐Making for Older People with Multiple Health and Social Care Needs: A Protocol for a Realist Synthesis to Inform Integrated Care Models." BMJ Open 7, no. 2 (2017).
156 Gluyas, Heather. "Patient‐Centred Care: Improving Healthcare Outcomes." Nursing Standard (2014+) 30, no. 4 (2015): 50. 157 Anhang Price, Rebecca, Marc N. Elliott, Paul D. Cleary, Alan M. Zaslavsky, and Ron D. Hays. "Should Health Care Providers Be
Accountable for Patients' Care Experiences?" Journal of General Internal Medicine 30, no. 2 (Feb 2015): 253‐56. 158 Jayadev, Chethan, Tanvir Khan, Angela Coulter, David J. Beard, and Andrew J. Price. "Patient Decision Aids in Knee
Replacement Surgery." The Knee 19, no. 6 (Dec 2012): 746‐50. 159 Austin, Wendy. "Moral Distress and the Contemporary Plight of Health Professionals." [In English]. HEC Forum 24, no. 1 (Mar
2012): 27‐38. 160 Antiel, Ryan M., Farr A. Curlin, Katherine M. James, and Jon C. Tilburt. "The Moral Psychology of Rationing among Physicians:
The Role of Harm and Fairness Intuitions in Physician Objections to Cost‐Effectiveness and Cost‐Containment." Philosophy, Ethics and Humanities in Medicine : PEHM 8, no. 1 (2013): 8‐13.
161 Greaves, Claire, Judy Gilmore, Lizelle Bernhardt, and Lisa Ross. "Reducing Imaging Waiting Times: Enhanced Roles and Service‐Redesign." International Journal of Health Care Quality Assurance 26, no. 3 (2013): 195‐202.
162 Voigt, Kristin. "Appeals to Individual Responsibility for Health." Cambridge Quarterly of Healthcare Ethics 22, no. 2 (Apr 2013): 146‐58.
163 Strech, Daniel M. D. PhD, Samia M. D. Hurst, and Marion M. D. Danis. "The Role of Ethics Committees and Ethics Consultation in Allocation Decisions: A 4‐Stage Process." [In English]. Medical Care 48, no. 9 (Sep 2010): 821.
164 Davila, Fidel. "The Infinite Costs of Futile Care‐the Ultimate Physician Executive Challenge." Physician Executive 32, no. 1 (Jan/Feb 2006): 60‐3.
165 Yuen, Jacqueline K., M. Carrington Reid, and Michael D. Fetters. "Hospital Do‐Not‐Resuscitate Orders: Why They Have Failed and How to Fix Them." [In English]. Journal of General Internal Medicine 26, no. 7 (Jul 2011): 791‐7.
166 Srivastava, Ranjana. "The Art of Medicine: Critical Conversations: Navigating between Hope and Truth." The Lancet 378, no. 9798 (Oct 2011): 1213‐4.
167 Ulrich, Connie M., Ann B. Hamric, and Christine Grady. "Moral Distress: A Growing Problem in the Health Professions?" The Hastings Center Report 40, no. 1 (Jan/Feb 2010): 20‐2.
168 Illhardt, Franz‐Josef. "Conflict between a Patient's Family and the Medical Team." HEC Forum 19, no. 4 (Dec 2007): 381‐8. 169 Sibbald, Shannon L., Jennifer L. Gibson, Peter A. Singer, Ross Upshur, and Douglas K. Martin. "Evaluating Priority Setting
Success in Healthcare: A Pilot Study." BMC Health Services Research 10 (2010): 131. 170 Bowers, John. "Balancing Operating Theatre and Bed Capacity in a Cardiothoracic Centre." [In English]. Health Care
Management Science 16, no. 3 (Sep 2013): 236‐44. 171171 Baghbanian, Abdolvahab BSc MSc PhD, and Ghazal B. S. M. P. H. Torkfar. "Economics and Resourcing of Complex
Healthcare Systems." Australian Health Review 36, no. 4 (2012): 394‐400.
50
Chapter 2: Human Rights in Health Care
2a A Right to Health Care
Human rights are based on the intrinsic dignity of human beings and require protections
for all persons to achieve self-determination. Health is a human right because it is a prerequisite
for any human to act freely and to make autonomous choices. Until now, the duties related to this
right have not yet been clearly defined, but this chapter will explain that the right to health
requires a right to quality health care. The right to quality health care is fundamentally supported
by principles of equity, respect for human vulnerability and social responsibility.
2ai Health Care as a Human Right
Health and health care are requirements for participation in a democratic society since
they are requirements for functional ability. Health was not always assumed to be a right,
however, and this right has evolved over the past several centuries.
The Emergence of Health as a Human Right
Human rights discourse emerged in the mid-1700s and showed its influence in the
American Declaration of Independence of 1776 and the French Declaration of the Rights of Man
and Citizen in 1789. It continued to develop after mass human rights violations during the two
world wars, and it grew into a global discourse through the establishment of the United Nations.
Bioethics has emerged alongside of human rights and is used to guide systematic health-related
human rights decisions and analysis.
Human rights discourse originated in both America and in France. In America, human
rights discourse first focused on both particularistic and universalistic version of rights language,
51
while the French embraced the universalistic version.1 The American focus on universalism and
particularism was related to its core cultural value of independence. As Americans made
arguments for independence, human rights dialogue moved toward a universalistic approach,
although human rights became a secondary priority compared to concerns over the new national
framework. 2 While Americans saw human rights as secondary to its new national framework,
the French saw rights as a primary concern for its framework to rebuild its government. For these
reasons, The Declaration of Rights of Man and Citizen in France was established before The
Declaration of Independence in America. The Declaration of Rights of Man and Citizen laid out
general principles of justice including equality in the law, no arbitrary imprisonment or
punishments, and the accused as innocent until proven guilty.3 These became the foundations for
spreading acceptance of human rights principles.
The declarations of rights in America and France were both were formal, public
statements that claimed that rights already existed but needed to be defended.4 Although they
were a good start in defining human rights, these declarations proved to be thin and became
secondary considerations to other political and social issues of their time. It took two World
Wars and the creation of the United Nations to prioritize human rights and bring it to a global
forum. The emergence of the concept of “Right to Health” was an important part of this
dialogue.
Although the Universal Declaration of Human Rights recognizes that a person has a right
to adequate health and wellbeing, including medical care, its social impact on the right to health
has been minimal until recently. In the year 2000, the UN Committee on Economic, Social and
Cultural Rights issued General Comment 14, which clarified the scope, duties, and entitlements
related to the right to health.5 These rights include the right to the highest attainable standard of
52
health, which was originally defined by the World Health Organization Constitution in 1948.6 In
addition, further clarification has been offered by a Right to Health Statement issued by the UN
High Commissioner for Human Rights and the United Nations Special Rapporteur on the Right
to the Highest Attainable of Health in 2005. This statement explains that the right to health
means clean water, sanitation, accountability in health care decisions, the abolition of user fees
for primary health care, and training of health care workers, and clarifies that the right to health
does not mean the right to be healthy or that a government is expected to fund expensive health
care technologies.7 Rights discourse continued on in clarification and specification.
The2005RighttoHealthStatementwasanattempttouniteidealisticgoalswitha
respecttopotentiallylimitedresources.Thisclarificationcouldbehelpfulforanynation,
butismostapplicableforhealth‐relatedrightsindevelopingcountries.Itdemonstratesa
pragmaticapproachforglobalhealthissues,lookingforsolutionsthatcanbeappliedtoall
nations,notonlythosewhichhavealotofresourcesorahighlevelofwealth.Thisis
importantbecauseglobalhealthisnotsomethingthatcanbeimprovedwithoutactionable
policy.Itmustaddressrealissuessuchashealthinequalitiesandhowresourcesare
distributed.8Whenmovingfromhigh‐leveldeclarationstospecificpolicyandadvocacy
issues,questionsarisesuchas:“Whoisresponsibleforhealthinequalities?”and“How
shouldresourcesbedistributed?”Theanswerstothesequestionsarenoteasysincethey
arebasedinvaluejudgments.Toanswertheincreasinglycomplexglobalhealthquestions
ofthemodernworld,amethodologythatfacilitatesasystematicethicalanalysisshouldbe
used.Globalbioethicsisthelinkthatcanfacilitatethisanalysisandhelpglobalhealth
advocatesmakedecisionsonspecifichealth‐relatedhumanrightsissues.
53
The right to health forms the foundation of the right to quality health care, which
ultimately informs the responsibilities of organizations to address health inequity. The basis of
the right to health has been set forth by the United Nations. In December of 1948, the United
Nations established a standard of human rights for all persons through the Universal Declaration
of Human Rights. Notably, Article 25 of the Universal Declaration of Human Rights states that
“Everyone has the right to a standard of living adequate for the health and well-being of himself
and of his family, including food, clothing, housing and medical care and necessary social
services(…)”9 This article establishes a basis for discourse on health care as a human right.
In 2005, UNESCO (United Nations Educational, Scientific and Cultural Organization)
clarified the right to health by creating the Universal Declaration on Bioethics and Human
Rights, which describes key principles for recognizing and resolving ethical dilemmas in
bioethics.10 In 2015, the United Nations further clarified its approach to health and human rights
through the Sustainable Development Goals and Agenda 2030, which contains the goal of good
health and well-being.11 The goal of good health and well-being includes “universal health
coverage, including financial risk protection, access to quality essential health-care services and
access to safe, effective, quality and affordable essential medicines and vaccines for all.”12
The World Health Organization (WHO) adds additional clarity to the right to health.
According to the WHO, the right to health involves freedom to control one’s own body,
freedoms from interference in pursuing health and wellness, and equitable, systematic protection
for all to achieve the highest attainable level of health.13 This definition highlights the
importance of health equity, which has yet to be achieved in the United States. Health inequity
persists due to widespread disparities in access and outcomes based on social determinants of
health.
54
The United Nations Sustainable Development Goals were adopted on September 25,
2015 and include the goal to “ensure healthy lives and promote well-being for all at all ages.”14
The sustainable development goals highlight the continuing global focus on the right to health.
Although human right discourse has not been met unchallenged, it continues to provide a moral
standing to demand change that protects the inherent human dignity of all humans.15 Human
rights, including the right to health, recognizes that humans are not simply a means but an ends,
and is based on the respect of humanity and dignity that is equal and inherent in all humans and
should be protected by laws and social arrangements.16 Health in particular should be protected
by civil society structure and its representatives is essential for the fulfillment of other human
rights and fundamental freedoms17
Availability, Accessibility, Acceptability and Quality
In August 2000, the United Nations Committee on Economic, Social and Cultural Rights
(CESCR) clarified preconditions for the right to the highest attainable standard of health as
availability, accessibility, acceptability and quality.18 These preconditions are also the
foundations for the right to quality health care.
The precondition of availability states requires that “Functioning public health and
health-care facilities, goods and services, as well as programs, have to be available in sufficient
quantity…”19 This means that there must be an adequate number of health delivery systems, as
well as an adequate number and amount of essential services provided by those systems. All
persons must have the right kind of and amount of health care services available to them in a
meaningful way.
Problems with health care availability persist across the United States due to inadequacies
of health resources to meet health care needs. This can cause a high level of strain on the US
55
healthcare delivery system. For example, primary care availability affects the disproportionate
use of emergency and urgent care services in the United States. When primary health care is
unavailable due to long wait times, individuals are left with no other choice but to use urgent or
emergency care.20 This causes an inefficient use of and undue burden on already scarce
resources. In this case, primary health care is not effectively available for individuals to utilize.
When there are not enough health care resources to meet the needs of individuals in a
community, the criteria of health care availability is compromised.
Concerns of availability are not limited to direct medical care. Availability of community
pharmacies vary substantially across areas and are often misaligned with local population
needs.21 Availability concerns cross the continuum of health care into ancillary and secondary
health services which directly affect the realization of the right to health. In order to meet the
requirement of availability, all types of required services must be available to individuals who
need them. This includes general and primary care, inpatient hospital care, medical devices,
pharmaceutical drugs, and chronic condition management.
There are several specific contexts in which the precondition of availability is especially
challenging within the United Sates. The precondition of health service availability can be
particularly difficult in rural communities. There is an availability gap between rural and urban
medical care related to rural health shortage of physicians, hospitals, and associate health
professionals.22 Although this problem persists, health care delivery services can and should
work to address these availability gaps for rural populations. Namely, availability of health
services in rural communities can be improved through an integrated approach focused on
continuity of care, distribution of health workforce, capacity development through existing
networks, and collective action.23 A focused effort on improving these availability issues in rural
56
areas can help to promote the right to health. Availability of health care services does not only
extend to physical resources, but also human resources. When there are not enough providers or
health care staff to meet the community needs, availability requirements are not met. Health care
delivery organizations have a clear role with related obligations within this integrated approach.
Health care delivery organizations can use a variety of approaches to address the
availability of health care services, thus meeting this precondition to health and human rights.
Technology is one example of how health delivery organizations can improve availability.
Technology can improve availability of care for specific and changing patient needs, such
coordination of primary and specialty care for those with multiple chronic conditions.24 One
example of this approach is the use of telemedicine. Telemedicine and other technologies could
be used to bridge the availability gap by allowing remote access to timely medical advice and
expertise.25 For example, rural hospital tele-ICU, is a tool that can be used for extra support and
assistance addressing availability problems of critical care workforce shortages, difficulty
recruiting and retaining, long distance between patients in hospital and home community26 In
addition, telemonitoring can be used to manage chronic conditions for vulnerable patients.
Telemonitoring can also be used to support chronic disease management, which will only
become more important as both the population life expectancy and chronic disease incidence
increase.27 These are just a few examples of how technology can address gaps in availability of
health services.
In addition to availability of services, individuals and groups must also have access to
available services to meet the conditions of health and human rights. Access includes the
meaningful ability to use available health care goods and services.
57
The precondition of accessibility states that “health facilities, goods and services have to
be accessible to everyone without discrimination(…)”28 This means that all individuals must
have equitable access to health care delivery systems. In other words, all individuals who need a
health care service must have equal opportunity to use available health care goods and services.
Barriers to equitable access can include issues like lack of reliable transportation and inadequate
insurance coverage.
While a large amount of political discourse and public policy is focused on access in
terms of health care financing, reimbursement systems are not the only factor that infringe upon
equal access to health care.29 There are many reasons why individuals and groups may lack
access to the health services that they need. Timely access to health care may be affected by
factors like appropriate staffing, logistics of scheduling appointments, patient arrival times, and
providers keeping to schedules.30 Health care services may be available, but if they are not
available at a time when a patient can utilize the services, they will lack access.
Transportation and physical access can also be a barrier to realizing the right to health.
Older adults in rural areas face transportation barriers to access medical care as compared to their
urban counterparts.31 Those who do not live in areas with reliable public transportation may lack
transportation to health care facilities, other than emergency ambulance service. Also, those who
need ongoing non-emergency medical transportation, such as those with end stage renal disease,
can face barriers to access where frequency and timing of visits is an imperative for compliance
with treatments.32 Even if a service such as dialysis is available, if a person is unable to access
that necessary service, they will not be able to utilize it and ultimately lack the opportunity to
pursue their right to health. A person may also lack access to transportation for health-related
58
goods and services such as healthy food and medication. Access to transportation can inhibit
one’s ability to achieve their highest possible level of health for many reasons.
In addition to resource barriers to access, socioeconomic barriers can limit or eliminate
meaningful access for some marginalized groups. For example, there is a variation of
neighborhood risk and access to care – especially in the southeast US where the legacy of racial
segregation prevails and there is a negative correlation between concentration of black residents
in individual’s neighborhood and satisfaction with health access.33 Another example of
socioeconomic access barriers is illustrated by the homeless population in the United States.
Barriers to access faced by the homeless go beyond health insurance to general mistrust of
healthcare providers, lack of access to primary care provider, and fear of legal ramifications.34
Barriers related to socioeconomic status that affect access to health care can be multifaceted and
complex. They can be physical or psychological, and very depending on a person or group’s
specific situation.
In addition to physical health care access, access to health services also includes access to
information. Access to information involves clear, direct communication that meets the needs of
those with low literacy level and low English proficiency, plus any other potential structural
barriers facing the patient population.35 An individual needs access to information for rational
decision-making about health care needs. If a person is not able to understand health-related
information due to language barriers, they will not be able to make informed decisions.
Likewise, if health information is not appropriate for the literacy level of the patient, they will
not be able to understand the critical information to inform their decision making. Health literacy
is also an important consideration. Health-related information should be provided in terms that a
person without a medical background or training can understand. Even if a person can read
59
health information accurately, the format of the information is also important for health care
information access. If information is shared on a web-based platform, some patients may not be
able to access the information due to technology issues. A person may either not have access to
the required technology or not understand how to use the technology. The medium for sharing
information must be appropriate for a person to access essential health information.
Although technology presents some challenges, it can help with some access issues when
used appropriately. For example, an improved model of hybrid telephsyciatry could help elderly,
homebound adults connect with psychiatry services.36 Although there are technology solutions
for some barriers to access, other delivery and policy interventions must be initiated to address
the overarching issue of access. Interventions to improve health care access should include
focused community and neighborhood interventions.37 Interventions based on community and
group-based needs may begin to address some of the socioeconomic barriers to meaningful
healthcare access. Addressing these needs may also begin to facilitate acceptability and quality
preconditions of the right to health.
The preconditions of acceptability and quality state that all health facilities, goods and
services must be respectful of medical ethics and culturally appropriate (…)” and “health
facilities, goods and services must also be scientifically and medically appropriate and of good
quality.”38 Like availability and accessibility, responsibilities for these conditions also lie within
health delivery organizations. Health delivery organizations are those who carry out medical
interventions and are responsible for monitoring and ensuring acceptable and quality care
delivery.
In order to be acceptable and high-quality, health services must be responsive to
population and community-specific needs. Rational deliberation toward health incentives may be
60
inhibited for those in the most disadvantaged environments, so smart design should be prioritized
over incentives and mandates.39 An acceptable and quality health system will use systems design
to provide health care delivery that meets the needs of the population it serves. Continuous
quality improvement will be an integral part of quality management, and current evidence-based
practices will be incorporated into quality design.
This systems design should use an integrated health care model. Health delivery models
should move away from specialized episodic models to integrated longitudinal model that
connects acute and community health systems with non-healthcare service systems.40 An
acceptable, quality health care delivery system will be integrated and meet patient needs across
the continuum of care. This integration will include important collaborations with communities
and other related health services across the continuum. Intersectional interventions are needed to
improve acceptability and quality of care that include attention to social, commercial, cultural,
economic, environmental, political determinants of health.41 A wholistic approach to health that
encompasses integrated care across the health care continuum will meet the criteria of
acceptability and quality.
Health care delivery systems have special responsibility to transform their organization to
meet these preconditions to the right to health. Health delivery leaders can transform
acceptability of health delivery by: building teams around shared vision; developing and
executing pillars of strategy at every level of the organization; commitment to teamwork;
fostering a high-reliability learning organization; alignment of people with a shared language;
Continuous and effective 360-degree communication and accountability; translation of big
picture goals in meaningful ways; transparency; tailored organizational structure; and translation
61
of best practices.42 In these ways, health care delivery organizations can move toward the
establishment of preconditions for the right to health.
2aii Equity in Health Care
The availability, accessibility, acceptability and quality of health care should be
established on a foundation of health equity. Equity means fairness, not necessarily equal
treatment – i.e. equality of opportunity versus equality of outcomes.43 The right to health
involves the right to fair and equitable health care that is available, accessible, acceptable, and
provides high-quality. The UNESCO Declaration on bioethics and human rights includes the
principle of equality, justice and equity that states: “The fundamental equality of all human
beings in dignity and rights is to be respected so that they are treated justly and equitably.”44 The
principles of human rights indicate that distribution of health care should be fair.45 A systematic
approach to health equity should be used to protect health and human rights. Without a
systematic approach founded in bioethics, non-equitable approaches may be used.
Specifically, human rights discourse should address disparities in health care outcomes
and help to define duties of health care organizations to provide quality care. These disparities
are related to both horizontal and vertical equity. Horizontal equity requires that those with equal
need be treated equally, while vertical equity requires that those with different needs be treated
differently, but fairly.
Horizontal Equity
Horizontal equity states that those with equal need should be treated equally.
Unfortunately, unfair health inequities exist in the United States, hindering the ability of
marginalized groups to realize the right to health. This is problematic in terms of disparities in
62
health care availability, accessibility, acceptability, and quality. Health care is instrumental to
quality of opportunity since unfair disease and disability restricts normal opportunity and limits a
person’s fair, normal range of skills preventing them from accomplishing a life of flourishing.46
Individuals will not be able to meet fair opportunity to accomplish life goals without equitable
access to health care.
Inequalities in health outcomes can occur for various, often intersecting reasons. In
general, inequalities in flow from three major sources: the workings of social structure, voluntary
personal choices or behaviors, and natural differences in human endowment or fortuitous events
outside of social structure.47 In terms of health outcomes, inequalities can exist based on social
context, personal lifestyle choices related to health, and/or genetic fortune or misfortune. Social
context involves social vulnerabilities that may affect a person’s health. For example, vulnerable
groups experience a disproportionate burden of cancer incidence and mortality, at least partially
attributed to early experience that create downstream risk for cancer such as adverse childhood
experiences, maternal alcohol consumption in pregnancy, childhood obesity, high or low birth
weight, benzene exposure, exposure to tobacco in utero and early stages, and early exposure to
infection.48 Voluntary or personal choices may also affect incidence of cancer – for example
engaging in risky behaviors such as tobacco use. A person’s genetic predisposition to cancer may
also play a role. These risks and inequalities in health outcomes may grow from one or a
combination of these social, personal behavior, and natural differences in human biology. The
principle of vertical equity states that those who have equal need for health services – regardless
of the inequalities in risks that a person may face – should receive equal availability and access
to acceptable, quality care. The principle of vertical equity states that those who have equal
needs, should be treated equally.
63
While those who have equal need for quality health care should receive equal availability
and access to quality health care, barriers often exist to prevent the realization of this right.
Addressing health inequities involves addressing the underlying reasons for unjust access,
availability, acceptability, and/or quality of health care. Health inequities occur across the social
gradient and are related to social and economic conditions where people grow, live, work and
age.49 A person’s environment and socioeconomic status can cause them to experience negative,
inequitable health outcomes. Health inequities are affected by economic inequities, disparities in
geographical dispersion of health services, and both direct and indirect costs of health care
access.50 The social inequalities that individuals face can create significant barriers to realizing
the right to quality health care. Based on horizontal equity, these social and economic reasons do
not justify denying a person’s right to quality care.
Some vulnerable groups face higher risk and worse health outcomes than others. The
inequity of health outcomes for those with the same health needs reflects horizontal inequities of
the health care delivery system. There are many examples of horizontal inequities in health care.
Over the last 30 years, breast cancer mortality rates have improved overall, yet many geographic
areas have actually seen a widening mortality gap in breast cancer outcomes between black and
white breast cancer patients.51 When advances in health care therapies and technologies are not
available for all persons equally, horizontal equity is unmet and the human right to health is
violated for those experiencing disparate care. Addressing disparities in health care outcomes is a
step toward improving horizontal equity in health care.
Horizontal equity is needed for the pursuit of health, or the realization of the right to
health. The principle of health equity creates an essential moral support for the justification of
quality health care as a human right. Human rights, including the right to health, protect the
64
fundamental conditions or opportunity for pursuing a good life as well as the essential resources
needed to meet these conditions.52 The right to health is not meaningful if it does not require
resources or support for persons to realize that right. The right to health involves the right to
achieve the highest attainable level of health, and the support resources and services for all
persons to protect a person’s ability to pursue health. All persons should have equal opportunity
to pursue the highest achievable level of health, per the human right to health. Since many
individuals face inequitable conditions that prevent them from pursuing the highest quality of
health care available, this human right is not currently being realized either globally or within the
United States. State governments have a significant role in protecting equitable availability,
accessibility and acceptability of quality health care, but the responsibility for carrying out
conditions to protect this right lies within health care delivery organizations. Health care delivery
organizations have a responsibility to protect health equity at the level of health care delivery.
Health delivery organizations can use data to inform decision-making about horizontal
health equity. Data is an essential for effective implementation and monitoring of health equity
metrics. Disaggregated data should be used to illustrate patterns and indicators of health
distribution within the population and inform policies, programs, and practices related to health
promotion. 53 This data can inform health delivery organizations on how to provide equitable
services. Health care leaders can drill down on aggregated data to analyze any gaps in equitable
health outcomes and how these gaps may be improved or addressed.
Data related to health equity can frame horizontal equity and areas of improvement in a
productive way. Data analysts can find areas of opportunity where cooperation and capitalizing
on existing resources can reduce inefficiencies and unfair distributions to create more equitable
service delivery. In general, a paradigm of cooperation should be used since competitive, market-
65
driven approaches create winners-versus-losers mentality which engenders health inequity.54
This approach, combined with data to inform decisions, will help health delivery organizations to
provide equal care to those with equal needs. Health care delivery organizations should
cooperate not only among themselves, but also with community stakeholders that have an
interest and can make an impact on key health issues. With data and information to inform
decisions, health care organizations can develop interventions to create more equitable
interventions and policies.
Importantly, the concept of cooperation rather than competition is aligned with, rather
than against American ideals of individual freedoms. In addition to ethical dimensions,
cooperation and fairness can create an improved economic environment. The free market can
benefit from distributional fairness in health because it can lead to higher consumption demand,
more productive members of society, and reduced crime through reduced poverty.55 Health
equity creates conditions where citizens can pursue the “American Dream,” – or the opportunity
to achieve regardless of social circumstance at birth. When distributional fairness exists and
individuals have fair economic opportunity, the concentration of wealth moves to the population
that will increase demand through consumption. In addition, those who are healthier and more
educated with more employment opportunities will be more productive members of society.
Poverty and crime rate also creates a positive social environment for the free market to thrive,
while simultaneously creating an improved quality of life for all citizens.
Health Delivery organizations can support horizontal equity in many established and
innovative ways. New approaches to health equity may help – including innovations in
technology. For example, social media can be used to facilitate knowledge translation and build
relationships to impact social determinants of health and equity.56 Health care delivery
66
organizations have a responsibility to develop and apply approaches to protect horizontal equity,
and treat all individuals with equal need, equally. This includes health equity in all areas of the
triple aim of health care. The Triple Aim of health care reform – or improved outcomes, patient
experience and cost control - should be guided by a framework of health equity that promotes
institutional accountability.57 Health equity should include equitable opportunity for positive
health outcomes. It should also include equitable opportunity for positive patient experiences. In
addition, cost control and financial incentives should be implemented equitably among the
patient population. The triple aim will be most effective when health care delivery organizations
are accountable for monitoring and protecting horizontal health equity. Monitoring and data
analysis should include segmenting data to ensure that no marginalized groups have unfair, poor
outcomes compared to the general patient population.
Health delivery organizations have an obligation as well as the ability to protect
horizontal equity. Individuals with equal needs should be treated equally according to horizontal
equity. Also in accordance with equity, individuals with differing needs should be treated
differently but fairly. This is described as vertical equity. Health care delivery organizations also
have obligations to ensure vertical equity for the individuals and populations that they serve.
Vertical Equity
Vertical equity means that patients with differing needs should be treated differently, but
fairly. Patients may have differing needs for various reasons that may arise from existing
inequalities. For example, inequities in access and insurance status can result in patients
presenting in late stages of disease.58 When a person faces barriers to pursuing the highest
attainable degree of health, they have an elevated need for protection of the right to health.
Vertical equity explains that those who need more, should get more in terms of health services
67
and protection of their right to health care. Those persons with special or extra needs related to
the pursuit of health can justifiably receive more resources or support to optimize their health,
based on vertical equity.
For example, those facing inequalities of access should be given preferential treatment
due to need, based on vertical equity. For example, if a specific neighborhood patient population
lacks transportation to the local hospital, a shuttle system may be instituted between the affected
neighborhood and the hospital. Since the specific neighborhood has a need, they will have
preferential treatment over other neighborhoods that do not lack transportation. Equity
considerations are important because, even though health is somewhat the product of voluntary
actions, it is more significantly affected by genetic, environmental and social factors that could
be avoided by medical and public health interventions.59 If medical and public health
interventions would be able to address the factors that inhibit one’s ability to pursue health, then
those medical and public health interventions should be implemented. Those who are unable to
access health care because they lack adequate social and economic resources such as education,
transportation, or health insurance, should be given a greater amount of assistance than those
who have adequate social and economic resources.
Many health outcomes are influenced by meaningful access to adequate, equitable health
care resources – including quality of life outcomes. For example, the quality of a person’s end of
life years are only weakly correlated with chronological age, while other aspects such as
behavior, genetic inheritance, social factors have a stronger correlation with end of life quality.60
These behavior, genetic, and social factors can be addressed through targeted interventions to
improve quality of life in those who suffer worse quality of life outcomes. Health delivery
68
organizations protect fairness and equity by providing proportionate care to those who need it
more based on these factors.
Differing medical needs are not only based on social factors, but also on disease state.
For example, barriers to access of care for rare diseases include delayed diagnosis and limited or
nonexistent treatment options.61 Efforts to protect equitable treatment and access for those with
rare diseases would protect vertical equity. Patients who receive less attention or are not
effectively assessed because of their type of disease may face vertical inequity based on their
disease state. Likewise, if a person has an advanced stage of a particular disease, they can
legitimately receive more health resources and treatment options based on their medical need.
This is justifiable based on vertical equity.
In addition, the needs of changing population demographics will affect health care
delivery response to vertical equity. The population in the united states is getting older and more
diverse. Growing population diversity and increasing burden of chronic, interacting needs are
contributing to increasing complexity of patient needs.62 Those with greater needs based on these
demographic changes should be protected based on vertical equity. This will become
increasingly important as the population ages and becomes more diverse. Patients will have
highly variable health problems and present to health care delivery systems with differing levels
of health care needs. Health care delivery systems should provide different, but fair treatment to
those who present with varying degrees of health care needs.
Health care delivery systems can use various tools to address vertical inequity.
Disparities in health vary between communities and effective interventions have been employed
to improve health equity in some geographic areas. These successes can be used to create
solutions based successful interventions in terms of how to measure disparities and local
69
variation, developing interventions from common elements of success, testing interventions, and
building coalitions and feedback loops.63 Community-based interventions that target individuals
and groups with greater risk and health needs can help to reduce vertical inequity of health.
Providing targeted, additional interventions and resources to those who need it the most is
aligned with vertical equity, which states that those with differing needs should be treated
differently, but fairly.
Communities lacking equitable health care availability, accessibility, acceptability and/or
quality should be included in the development of health delivery interventions to promote
vertical equity through multi-sector partnerships. Developing multi-sector partnerships that
include community stakeholders can help with identifying and addressing the inequitable social
structures and economic systems that contribute to health inequity.64 Health care delivery
systems can learn about the social, economic and environmental risks and community-specific
needs through these partnerships. When there are specific socioeconomic or community needs,
the key stakeholders can offer not only root causes but also propose solutions that could be
meaningful to their community.
For example, some communities have a high incidence of obesity, and have a greater
health needs due to obesity-related health problems. Health care delivery organizations can tap
into existing resources and create new, community-specific interventions to address health
problems in vulnerable groups, like those with high incidence of obesity. The CDC has a toolkit
to address disparities in obesity incidence, addressing the role of environmental factors and the
persistence of health disparities related to age, income, education, gender, race, ethnicity, and
geographic region.65 This is just one example of a tool that health delivery organizations can use
to target, monitor and address community or group-specific health needs and promote vertical
70
equity. Health care delivery organizations can work with communities to use both existing tools
and to develop innovative ways to affect their barriers to health.
Promoting health equity is essential for protecting health and human rights. Human rights
protect the fundamental conditions of pursuing a good life, or conditions necessary for engaging
in basic activities like deep personal relationships, active and passive pleasures, and attaining
knowledge.66 When a person does not have a fair chance to pursue a good life, they are not being
afforded human rights. Health equity is a critical component of the right to health. In addition,
the health equity and the right to health are prerequisites to all other human rights, since a person
must be healthy before they can pursue any other opportunity.
The obligations of health care delivery organizations to protect horizontal equity are
related to the nature of human vulnerability. Obligations related to vertical equity are related to
special vulnerability. Social responsibility in health care explains why these obligations exist to
protect these vulnerabilities, thus promoting health equity.
2b Human Vulnerability & Social Responsibility in Health Care
Respect for human vulnerability and social responsibility are the most relevant principles
for health and human rights and explain the organizational obligations to protect or promote the
human right to health. Vulnerability is a common human experience, although the degree of
vulnerability that humans face varies greatly. Social responsibility describes the obligations that
humans have toward one another, especially toward other more vulnerable humans. These two
principles combined create the foundation for health as a human right.
71
2bi Respect for Human Vulnerability in Health Care
The UNESCO Universal Declaration on Bioethics and Human Rights includes the
principle of respect for human vulnerability and personal integrity, declaring: “In applying and
advancing scientific knowledge, medical practice and associated technologies, human
vulnerability should be taken into account. Individuals and groups of special vulnerability should
be protected and the personal integrity of such individuals respected.”67 This means that the
concept of vulnerability must be integrated into assessments of health and human rights. The
respect for human vulnerability is linked to respect for personal integrity.
Rights and interests of the vulnerable should be protected, although criteria on how to
protect the vulnerable needs more robust and integrated guidelines.68 Criteria and guidelines for
protecting vulnerability will be described in this dissertation.
There are two major views of human vulnerability that will be discussed in this chapter:
the universal view of vulnerability as the fragile, ontological condition of humanity and
relational vulnerability, which affects those who have diminished capacity to protect their own
interests.69 The nature of human vulnerability will be discussed first. The nature of human
vulnerability describes how all humans are fragile and share a mortal condition. Special
vulnerability describes how some humans experience an elevated level of vulnerability based on
specific and special conditions or circumstances.
The Nature of Human Vulnerability
The nature of human vulnerability describes the common human condition of
vulnerability. All humans have a common vulnerability based on the shared potential to be
wounded physically psychologically, morally, and spiritually and the shared ability to suffer.70
72
All humans have this common capacity to be harmed, and thus vulnerability is part of human
nature and common to all humans.
All humans share a degree of vulnerability based on the mortal human condition and
capacity for suffering. All humans are vulnerable at some point in their life continuum.
Vulnerability, which can occur at any time in individual's life, is dependent upon internal and
external factors within the lifecycle continuum, is linked to risk and susceptibility, and involves
an interplay between environment and individual.71 Humans have the capacity to become
vulnerable due to both internal and external factors. Internal factors include human biology and
susceptibility to physical and mental suffering and disease. External factors can also cause
vulnerability, such as a person’s economic resources, and how well they are able to respond to
environmental stressors. Both internal and external factors will interact to create vulnerabilities
during a person’s life.
For example, if a person is having financial troubles and at the same time is diagnosed
with cancer, these two vulnerabilities work together to create the person’s overall vulnerable
situation. The nature of human vulnerability describes how all humans are susceptible to this
type of suffering. All humans may, at any time in their life, financially struggle while at the same
time receive a diagnosis of cancer. Some individuals may be more or less susceptible, but all
individuals have some level of susceptibility to this suffering. The financial/cancer diagnosis
example is just one example of a way in which any human has the potential to suffer but there
are infinite examples of this common potentiality for suffering. Therefore, the human condition
includes a common potential for suffering, or vulnerability. Both individual and environmental
factors will affect the manifestation of a person’s vulnerability. How the nature of human
73
vulnerability manifests in each person may differ related to the individual and environmental
factors that a person faces, but the potential for this suffering is equal in all humans.
The nature of human vulnerability is the foundation for the justification for health equity
and health and human rights. All humans are vulnerable, so all humans have a level of equal
need for protection of their human integrity. The complex and subtle realities of a patient’s
disease experience can inhibit their ability to self-manage, so vulnerability and dependency
should be included as guiding principles for both health policy discourse and clinical practice.72
There is a potential in all persons to lose the ability to self-manage and become dependent based
on the realization of their common human vulnerability. Health policy and clinical practice
should recognize that all humans have this potentiality and principles of horizontal equity should
be incorporated into policy and practice to protect this common vulnerability.
Protecting the right to health and equitable availability, accessibility, acceptability and
quality of care will ensure health equity – specifically horizontal health equity – and elevate the
capacity for and recognition of humanity in all persons. Human vulnerability bonds and binds
people, tending to the intense social needs of humans by allowing for the possibility for
compassion to suffering and connection with the common humanity of mortality and fragility.73
The nature of human vulnerability, and the protection of health equity through the right to quality
health care facilitates the recognition of common humanity and dignity, and creates a higher
level of understanding and respect for what it means to be human.
The nature and importance of human vulnerability creates an obligation to protect those
in whom this vulnerability has manifested. The nature of human vulnerability explains that all
humans have the potential to be harmed, or to suffer, and reciprocity would entail an obligation
to protect others with the understanding that oneself would be protected when in need. Since all
74
humans are vulnerable or susceptible to physical and emotional injury, attack, wound or damage,
all humans need a level of protection or prevention of harm or violation of personal integrity.74
Providing this protection helps others within human societies, but also is protection for oneself
knowing that the nature of human vulnerability means that oneself could experience injury,
attack, wound or damage at any time.
All are vulnerable but some are more vulnerable because of membership in group such as
those who are poor, marginalized groups, disadvantage, people of color, low socioeconomic
status.75 Those who face vulnerability in addition to the nature of human vulnerability, have
special vulnerability that must be protected under the principle of vertical equity. The universal
vulnerability of the human condition allows for circumstances that lead to special vulnerability,
such as those related to disease, disability, personal conditions, environmental conditions, and
limited resources.76 The nature of human vulnerability is the precondition for special
vulnerability. The nature of human vulnerability should be protected in respect to horizontal
equity, while special vulnerability should be protected with respect to vertical equity.
Special Vulnerability
The Council for International Organizations of Medical Sciences (CIOMS) Guidelines as
revised in 2002, have defined vulnerability as: "a substantial incapacity to protect one's own
interests owing to such impediments as lack of capability to give informed consent, lack of
alternative means of obtaining medical care or other expensive necessities, or being a junior or
subordinate member of a hierarchical group;” and outlined special protections afforded to
vulnerable groups: “accordingly, special provision must be made for the protection of the rights
and welfare of vulnerable persons.”77 A person who is unable to protect their own interests and
needs special protection has special vulnerability. A person may not be able to protect their own
75
interests based on inability to give informed consent or because of power dynamics that keep
them from making free and autonomous decisions. Individuals who experience special
vulnerability and are unable to advocate for themselves and their own interests deserve special
protection in terms of the human right to health.
Health care delivery organizations have the power and the obligation to protect and
address the sources of these special vulnerabilities. Special vulnerability is a harmed condition
that leads to limited opportunities leading to deprivation of worthwhile experiences, missed
possibilities and missed opportunities.78 In these terms, vulnerability has a clear negative impact
on the realization of the human right to health. Special vulnerability impacts the degree and
manner that individuals are able to pursue opportunities for health and well-being. Special
vulnerability is the realized potential of the nature of human vulnerability. It can be caused by
risks associated with group membership, or group vulnerability.
The European Court of Human Rights has characterized group vulnerability, which has
allowed it to substantively address aspects of inequality. Although this characterization risks
stigmatizing, essentializing, stereotyping, it can be useful (when aligned with the work of
international and human rights organizations) for prioritization of scarce resources, guiding state
preference to those who need the most.79 Based on special vulnerability, some individuals have a
claim to more resources than others, and many individuals with these claims are part of
marginalized groups that make them especially vulnerable. Identifying groups with special
vulnerability can be an efficient ay to allocate resources to groups with a history of
marginalization. This cannot be the only approach, however, since the risk of overgeneralizing
may miss vulnerable individuals and groups that do not fit into the explicit group categorization
of need.
76
Special vulnerabilities hinder the ability of individuals to pursue opportunities and reach
potential for well-being. In other words, obstacles that restrict capacity for flourishing create
special vulnerability.80 The goal of vertical equity is to remove these obstacles for flourishing.
The human right to health offers protection for vertical equity in health and the ability for all
humans to have equal opportunity to flourish. The opportunity to flourish entails the opportunity
for self-actualization and reaching one’s potential.
Geographic, demographic and socioeconomic characteristics can impact the special
vulnerability of individuals and groups. When studying special vulnerability, it is helpful to
examine these characteristics to determine the root cause special vulnerability. Neighborhood
risk factors can give insight to chronic diseases, which can disproportionately burden minorities
and low-income populations.81 There are many factors that can lead to special vulnerability
caused by the environment and social context of individuals and groups.
Special vulnerability can be caused by a multitude of reasons and special vulnerabilities
can have a compounding effect. Individuals and groups may face double disparity when they are
both medically overburdened and medically underserved, facing a disproportionate number of
environmental hazards plus limited health care access.82 These environmental factors can include
individual and group risk factors. The environmental and medical risks faced by an individual
can create a high level of special vulnerability that may impact the realization of the right to
health if vertical equity concerns are not addressed. Analyzing and addressing these vertical
equity concerns should incorporate community feedback and involvement in policy decision-
making. Vulnerable populations, such as African Americans, should be given fair, proportional
representation in policy decision-making decisions that affect them.83 Involving vulnerable
77
populations in decisions that affect individuals in their communities can help to provide the
appropriate services and care and promote vertical equity.
In addition to environmental and socioeconomic vulnerabilities, life course can cause
special vulnerabilities. Age-related vulnerability is heightened at both the early and late years of
life, and the lowest age-related vulnerability somewhere in between.84 Special vulnerability is
explained as conditions of one’s life – either internal or external - that lead to diminished ability
to realize opportunities and rights. Those who have diminished abilities based on age-related
restrictions face special vulnerability. This includes the elderly and young children. Age-related
vulnerability tends be highest at the beginning and end of life, with the lowest level of age-
related vulnerability in the middle of a person’s life cycle.
Life course also influences a person’s vulnerability through early development that
affects coping mechanisms later in life. The life-course perspective explains that health later in
life is shaped by earlier experiences or previous stages of life course, so systematic economic and
social factors can create vulnerability or resilience at end of life.85 This can accumulate over
one’s lifetime and over generations. Those who have faced harmful conditions early in life, may
face greater vulnerability later in life due to their early exposure. Likewise, those who have faced
health-reinforcing experiences early in life may face a higher level of resilience later in life. The
differences in vulnerability caused by the life-course perspective can create vertical inequities, or
greater needs in those who have had harmful health-related experiences earlier in their life.
Special vulnerability should also be considered in terms of health care research. Special
vulnerability is related to health care research in terms of barriers to sampling, recruitment,
participation and retention of socioeconomically disadvantaged as research participants.86
National and international laws and guidelines have been established to protect these
78
vulnerabilities. The Belmont Report, signed into law in 1974, explains vulnerability in terms of
human research subjects and includes special protections for vulnerable groups such as racial
minorities, the economically disadvantaged, the very sick, and the institutionalized.87 In addition,
international guidelines have been established to protect special vulnerability in research. In
1964, the World Medical Association Declaration of Helinski created guidelines to protect
vulnerable individuals participating in research involving human subjects.88 The Declaration of
Helinski was last updated in 2013, and the current version includes clarification on special
groups with vulnerabilities: “Some groups and individuals are particularly vulnerable and may
have an increased likelihood of being wronged or of incurring additional harm.”89 Although there
are risks to conducting research with vulnerable groups and individuals, it should still be
completed in respect to protecting health equity. Research should look at how healthcare
resources can be distributed to alleviate injustice for vulnerable populations.90
Health care delivery organizations have an obligation to address special vulnerabilities
and protect vertical health equity. Special vulnerability is related to structures, institutions, and
processes that cause and exacerbate health inequalities that hinder vulnerable groups’ equal
claim to goods and services needed to live dignified flourishing life.91 Organizations can
accomplish this by developing a paradigm shift should occur when facing vulnerable individuals
and populations from protection of, to protection against.92 This shift re-focuses responsibilities
from specific vulnerable individuals and groups toward conditions that create vulnerabilities.
Addressing special vulnerabilities in health care delivery organizations involves accurate
and reliable assessment of vulnerable patients. Although assessment of psychosomatic
characteristics of vulnerability are generally straightforward, assessment of functional and social
domains of vulnerability demonstrate a high level of variability among physicians and may
79
benefit from a consistent vulnerability assessment instrument to promote a uniform and accurate
assessment of vulnerability.93 Physicians do not reliably assess functional and social domains of
vulnerability, so these areas should be consciously integrated into vulnerability assessments at
the health care delivery level. Special vulnerability can be complex and multidimensional,
including psychosomatic, functional and social elements.
In addition, health care delivery systems should implement programs to monitor and
address special vulnerability and vertical equity at the system level. Health care delivery systems
should use data to monitor and analyze potential inequities in health within their system. Health
information systems can support special protection of vulnerable groups by tracking health
inequalities, creating systems of accountability, and strengthening the empirical base for human
rights analysis and decision-making.94 Health care delivery organizations can use this data to
focus interventions that address these vulnerabilities. Data analytics can provide information on
if and where inequalities may exist. It can also create accountability for those who are tasked
with improving inequalities or protecting vulnerable groups. It also can help with the broader
picture of human rights discourse, providing empirical data to support interventions that promote
and protect human rights.
Health professionals providing care within health delivery systems also have a critical
role in addressing special vulnerabilities in their patients. This starts with developing a level of
trust with vulnerable patients. Health professionals can begin developing trustworthiness by
recognizing vulnerabilities and willingness to trust based on context-specific assessment of
personality, culture, race, age, prior experiences, socioeconomic and political circumstances.95 A
patient’s approach to interactions with the health care system and health care providers may be
80
affected by their particular vulnerabilities. Physicians must address this issue in their everyday
interaction with patients to effectively provide equitable health care.
Those with special vulnerability deserve special protection with respect for vertical
equity. There is a correlation between vulnerability factors and health care disparities in access,
treatment options, and prevention.96 Those facing special vulnerability face barriers and
obstacles to receiving the care that they need, that others without special vulnerability do not
face. This creates inequities in health care delivered and received. In addition, those with special
vulnerability have a greater likelihood of being wronged or denied legitimate claims to physical
integrity, autonomy, freedom, social provision, impartial quality of government, social basis of
self-respect or communal belonging.97 The denial of these legitimate claims have clear
implications for the realization of human rights – not just the right to health, but as a prerequisite
for the meaningful realization of all other human rights as well.
General and special vulnerability are interdependent since the special protection for those
who particularly vulnerable is based on fairly protecting what is due to everyone.98 All humans
are vulnerable, but some individual and environmental factors will cause the expression of
special vulnerabilities.
Social responsibility in health care explains why health care delivery organizations have
obligations to protect general and special vulnerabilities. This is supported by foundations of
social responsibility and confirmed by the social nature of health care.
2bii Social Responsibility in Health Care
The UNESCO Universal Declaration on Bioethics and Human Rights outlines the
principle of social responsibility for the right to health:
81
“Taking into account that the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition, progress in science and technology should advance: (a) access to quality health care and essential medicines, especially for the health of women and children, because health is essential to life itself and must be considered to be a social and human good; (b) access to adequate nutrition and water; (c) improvement of living conditions and the environment; (d) elimination of the marginalization and the exclusion of persons on the basis of any grounds; (e) reduction of poverty and illiteracy.” 99
Social responsibility in health care has many dimensions and includes access,
environmental issues, and reduction of health disparities. Social responsibility describes
the obligations that humans have toward one another based on social structures, norms
and obligations. Social responsibility also includes the obligations that organizations and
government bodies have toward the society in which they function, and individuals
within that society.
Foundations of Social Responsibility
Social responsibility is based on the social nature of humanity. The self is fundamentally
embedded in social world where values and emotions are directly related to social connection.100
Humans would not have a sense of self if not for social context. The emotions and understanding
that create the human experience are inextricably social. A person is defined and identifies him
or herself by the way in which he or she is perceived by others, and perception of the self
interacting with others. If a person asks oneself, “who am I?” the answer will be related to the
social world in which they live and breathe. For example, a person may answer this question by
describing their occupation, their familial obligations, or their personality. All of these answers
only have meaning within a social environment.
82
The complexity of human social nature is what makes humans unique from other
animals. Humans are intensely social with a unique ability for high-level manipulation of social
information, consciousness, understanding of self and understanding of others.101 Humans have
the capacity to understand and synthesize social information to create definitions of themselves
and others. Social interactions are an essential element of human self-actualization. One knows
themselves and realizes their potential through interactions with others. A person would be
unable to discover who they were and what they were capable of without human relationships.
The social environment of an individual explains the social norms that they carry with
them, and how these norms affect their decision-making process. Social norms and socialization
can help to explain behaviors such as reciprocity, the norm of equity, and the norm of social
responsibility.102 Belief in reciprocity, or mutual exchange, is facilitated by social norms and the
socialization that one has experienced within their lifetime. A person’s belief is fairness, or
equity is likewise influenced by socialization and accepted social norms. The role of social
responsibility, the place of social responsibility, and beliefs related to how social responsibility
should be carried out is also influenced by this socialization process. A person’s worldview,
including the way in which humans should rightfully interact, is influenced by social norms that
a person has developed through socialization experiences.
The identity of an individual is dependent upon the social nature of human dignity. How
a person interprets their own identity and connection with other humans has significant
implications for health and wellbeing. The wellbeing of individuals is inextricably linked to the
wellbeing of others, and can be influenced by a host of social experiences such as plagues,
pandemics, wars, acts of terrorism, and advances in medical science.103 The influence of these
83
social experiences can be positive or negative: negative, for example, in the case of plagues,
pandemics, and wars; and generally positive in the case of advances in medical science.
Overall, the social nature of humanity has positive effects on well-being and health.
Social arrangements can enable mutual advantage for participants that is a greater sum than its
parts – including greater economic opportunities and freedom to self-actualize.104 Of course, this
ability to gain greater economic opportunities and self-actualization only occur when there are
fair terms. Equal participation in democracy can be hindered if social arrangements are not
established in foundations of equity.
The advantages of the social nature of humans can be explained in terms of social capital.
Social capital, or productive social cohesion, allows individuals to share collective energy and
benefit from social support.105 What a social group can accomplish together is more than the sum
of its parts. People working in social groups can synergize and accomplish more as a social
group than they could have individually. Social capital is the economic benefit of socialization,
where social support systems are turned into energy or productivity. Social capital explains why
social group membership is beneficial for humans from an economic perspective.
This productivity is especially profound when it is inclusive of the whole population.
Inclusive growth through education and health creates a more productive labor force by
increasing productive employment opportunities for all, removing social constraints and
contributing to the overall economic growth and welfare of society.106 This means that societies
are more productive when there is more equity in health and education. A healthy population has
a larger and more productive workforce than an unhealthy population. Investing in health and
education has positive implications for economic growth and social stability.
84
Prioritizing social concerns, especially in policy discussions, has been met with some
resistance in the United States. This is because social norms in the United States tend to favor
individualism, or favoring self and one’s own circle over greater societal concerns.
Unfortunately, staunch individualism can ultimately diminish, rather than enhance, freedom
unless it is balanced with forms of cultural practice and a greater vision of social solidarity.107
When individualism is not balanced with social solidarity, corporate control can become the
dominant economic power and political influence, rather than democratic control of citizens.
The social nature of the human condition brings about responsibilities based on social
conditions. Responsibility occurs when an actor has freedom of will or action and
blameworthiness.108 In other words, responsibility occurs when an entity has freely acted to bring
about a consequence.109 When a person freely acts, he or she has the capacity to be deliberate,
and the deliberate action brings about a consequence – that person is responsible for the action.
The social nature of being human creates responsibilities related to social consequences. If a
social consequence is caused by a freely acting, deliberate entity, then that entity is responsible
for the social consequence of that action.
Social responsibility is related to protection of the most vulnerable individuals and groups
in the society, and promoting equity among all persons. Social responsibility can be carried out
by individuals, institutions, and governments. Governments often fulfil moral obligations to help
the poor based on responsibility to society, although policy fixes directly related to welfare may
only go so far to address the complex social issues including racial wounds, education, and
employment opportunity.110 The institutions and individuals within a society are in an effective
position to have meaningful influence on some of these significant social issues affecting poverty
and health outcomes.
85
Balancing individualism with social solidarity can be facilitated through social
responsibility, making social responsibility a useful concept for social institutions in the United
States. Social responsibility – which includes responsibility for impact of behaviors on others,
activities that benefit others, cooperation in social groups and basic concern for others – helps to
enhance one’s own meaning of life and gain perspective on one’s own problems.111 Actions
founded in social responsibility create positive outcomes for the recipient of services, but also
the provider of services. Acting in a socially conscious way provides a better sense of self
because it provides evidence of one’s place in the world.
Humans are both biological and social beings who engage with environments and
societies to create patterns of health, disease and well-being.112 Health care is inherently social
because of the connection between environments and the patterns of health, disease and well-
being. Social environment has a causal relationship with health and disease, and addressing
social dimensions of health is needed to support health and well-being.
The Social Dimension of Health Care
Disease is experienced, defined, and addressed through the complex domain of human
experience that provides its explanation, expectation and meaning.113 Thus, social and
environmental responses to disease management are crucial components of treatments and
therapies. Humans experience and understand disease through their social understanding of
health and illness. A person’s expectation about the disease process and treatment, as well as
how they interpret its meaning is based on social understanding of health and disease.
The social dimension of health care explains its responsibility to protect the right to
health care. Rights, including the right to health, are both positive and negative. Negative rights
86
involve the elimination of infringements upon individual liberties (such as right to free speech,)
while positive rights involve obligations to work toward goals that facilitate access and
conditions that make individual liberties possible (such as right to a fair trial.)114 There are both
positive and negative rights related to the right to health. Negative right to health involves
eliminating infringements upon ability to obtain the highest attainable level of health. This
involves removing barriers or obstacles to achieving health. Removing barriers to health related
to social determinants of health would be an example of responsibilities related to the negative
right to health. The positive right to health includes obligations to facilitate access to conditions
that make health possible. This includes providing available, accessible, acceptable, quality
health care for all persons.
The obligations to protect and promote the right to health lie within health care delivery
organizations, including administrative leadership, providers and staff. Health care delivery
organizations have a social obligation to improve quality of life within the communities they
serve.115 This is due to the nature of health care delivery. The purpose of a health care delivery
organization is to improve the health of the population it serves. The actions it facilitates and
policies it employs have a direct impact on individuals and communities it serves. The health
care delivery organization has responsibility because of the deliberate action it takes that has
direct impact on health of individuals and communities.
Health care delivery institutions have social responsibility in that they carry out deliberate
actions that create significant social consequences. The actions facilitated by health care delivery
organizations result in allocation of health care resources, and thereby allocation of health
opportunity. Health is a prerequisite for a productive, well-functioning society, so the decisions
87
that health care delivery organizations make – especially in terms of resource allocation – have
explicit social consequences.
Human decision-making is performed within a social environment. Decisions are not
made in a vacuum. Individuals weigh the implications of decisions in relation to their social
context. Decisions about health and well-being are made in a social context which affect
individual rational decision-making, so people's choices are seldom genuinely, fully autonomous
and a purely individualistic approach to health improvement is inadequate.116 Approaching
health care as though individuals make siloed, fully autonomous decisions will leave crucial
components of the patient’s needs and decision-making processing out. Humans can only be
fully cared for with consideration of their social environment. The implications for health equity
and respect for human vulnerability can also only be fully considered within the social context.
Health care delivery systems have social responsibility and are social organizations.
Health care is a social good, and should not be commodified based on the ethical dimensions of
health care goods and services. These ethical dimensions are based on equity, respect for human
vulnerability and social responsibility. The commodification of healthcare can create barriers to
access for the most vulnerable and distort the dynamic of healthcare delivery. Instead, a rights-
based approach should be used to develop equitable structures including financial and
infrastructure resources.117 The purpose of a health care delivery system is to provide a social
good, and so has social responsibilities along with this purpose. A rights-based approach will
facilitate equitable, socially responsible healthcare delivery.
The right to health is realized through health delivery organizations. The realization of
the fundamental right to health must be reasonable, progressive and subject to continuous
improvement, availability of resources, accountability, evidence-based standards, and must be
88
translated into health policies and interventions, practical applications, health practice, and health
interventions.118 Health care delivery organizations must take reasonable actions that
progressively address the human right to health through continuous improvement. Availability of
resources and accountability for actions is a key component of successfully promoting this right.
Evidence-based standards can be used to develop policies and interventions that can be used in
health practice and practical interventions.
The social responsibility of health care delivery organizations is evident, but honoring
this social responsibility is more difficult than simply recognizing it. Social institutions have
been built to provide security and protection of human ontological vulnerability, although these
institutions face inevitable social conflict due to scarce resources, human degradation of the
environment, and competition for limited space.119 Allocation of resources remains a challenge
to health care delivery and the practical implementation of the right to health. When there are
limited resources, allocating health care goods and services equitably, respecting both general
human vulnerability and special vulnerability, and honoring social responsibility is a major
challenge for health care delivery organizations. A human rights approach will help to clarify
ethical resource allocation within health care delivery organizations.
Health care delivery organizations are as important for health and human rights discourse
as state actors in health and human rights. There is a significant impact on health created by non-
state actors, which transcends conventional human rights discourse.120 Although conventional
human rights discourse has focused on state actors, the human right to health is carried out
through health care delivery organizations. These organizations must have standards to protect
health equity, based on their social responsibility to protect and respect human vulnerability.
89
Health and human rights has, until now, been general and focused on broad, non-specific
state-level protections. Now, health and human rights should move from general to specific
practice guidelines on health issues, defining core obligations that can be universally applied, as
well as the duty-bearers of this right.121 This should be translated to the responsibilities held by
health care delivery organizations. Health care delivery organizations have explicit social
responsibility to protect these rights, and have the capability to impact the protection of health
and human rights in a meaningful way.
90
1 Hunt, Lynn. Inventing Human Rights. A History. W.W. Norton & Company, New York/London, 2008. 116‐117. 2 Hunt, Lynn. Inventing Human Rights. A History. W.W. Norton & Company, New York/London, 2008. 118‐126. 3 Hunt, Lynn. Inventing Human Rights. A History. W.W. Norton & Company, New York/London, 2008. 127‐145. 4 Hunt, Lynn. Inventing Human Rights. A History. W.W. Norton & Company, New York/London, 2008. 113‐116. 5 Pinto, Andrew D. and Upshur, Ross E.G. (eds.): An introduction to global health ethics. Routledge, London and New York, 2013. 48‐49.
6 Constitution of the World Health ORganization . Geneva: World Health Organization; 1948. 7 Rothman, David J. and Rothman, Sheila M. Trust is not enough. Bringing human rights to medicine. New York Review of Books, New York, 2006. 154‐155
8 Pinto, Andrew D. and Upshur, Ross E.G. (eds.): An introduction to global health ethics. Routledge, London and New York, 2013. 8‐9
9 United Nations. “Universal Declaration of Human Rights” (Dec 1948) http://www.un.org/en/universal‐declaration‐human‐rights/
10 UNESCO. “Universal Declaration on Bioethics and Human Rights.” (Oct 2015.) http://portal.unesco.org/en/ev.php‐URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html
11 United Nations. “Sustainable Development Goals.” (2015.) http://www.un.org/sustainabledevelopment/sustainable‐development‐goals/
12 United Nations. “Goal 3: Ensure healthy lives and promote well‐being for all at all ages.” (2015.) http://www.un.org/sustainabledevelopment/health/
13 World Health Organization. “Health and Human Rights.” Factsheet No 323. (Dec 2015.) http://www.who.int/mediacentre/factsheets/fs323/en/
14 United Nations. “Sustainable Development Goals: 17 Goals to Transform Our World.” (Sept 2015.) http://www.un.org/sustainabledevelopment/sustainable‐development‐goals/
15 Annas, George J. "Human Rights." In Bioethics, edited by Bruce Jennings, 1612‐18. Farmington Hills, MI: Macmillan Reference USA, 2014.
16 Yamin, Alicia Ely, and Paul Farmer. Power, Suffering, and the Struggle for Dignity : Human Rights Frameworks for Health and Why They Matter. Philadelphia, UNITED STATES: University of Pennsylvania Press, 2015. (26‐41)
17 Acharya, Lalatendu. "Encyclopedia of Human Services and Diversity." Thousand Oaks, California: SAGE Publications, Inc., 2014.
18 UN Committee on Economic, Social and Cultural Rights (CESCR). “General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant).” (August 2000.)
19 UN Committee on Economic, Social and Cultural Rights (CESCR). “General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant).” (August 2000): 4.
20 Ansell, Dominique, James A. G. Crispo, Benjamin Simard, and Lise M. Bjerre. "Interventions to Reduce Wait Times for Primary Care Appointments: A Systematic Review." BMC Health Services Research 17 (2017).
21 Qato, Dima Mazen, Shannon Zenk, Jocelyn Wilder, Rachel Harrington, Darrell Gaskin, and G. Caleb Alexander. "The Availability of Pharmacies in the United States: 2007‐2015." PLoS One 12, no. 8 (Aug 2017).
22 Gunn, Jennifer L. "Meeting Rural Health Needs: Interprofessional Practice or Public Health?" Nursing History Review 24 (2016): 90‐97.
23 Schoo, Adrian, Sharon Lawn, and Dean Carson. "Towards Equity and Sustainability of Rural and Remote Health Services Access: Supporting Social Capital and Integrated Organisational and Professional Development." BMC Health Services Research 16 (2016).
24 Liu, Tsai‐Ling, A. SidneyBarritt Iv, Morris Weinberger, John E. Paul, Bruce Fried, and Justin G. Trogdon. "Who Treats Patients with Diabetes and Compensated Cirrhosis." PLoS One 11, no. 10 (Oct 2016).
25 Cheshire, William P. J. R. M. D. "Telemedicine and the Ethics of Medical Care at a Distance." Ethics & Medicine 33, no. 2 (Summer 2017): 71‐75,67.
26 Cassie Cunningham, Goedken, Jane Moeckli, Peter M. Cram, and Reisinger Heather Schacht. "Introduction of Tele‐Icu in Rural Hospitals: Changing Organisational Culture to Harness Benefits." Intensive & Critical Care Nursing 40 (2017): 51‐56.
91
27 Shankel, Erin Christine D. N. P. R. N. F. N. P. B. C., and Linda G. D. N. P. R. N. Cpnp Wofford. "Symptom Management Theory as a Clinical Practice Model for Symptom Telemonitoring in Chronic Disease." Journal of Theory Construction & Testing 20, no. 1 (Spring/Summer 2016): 31‐38.
28 UN Committee on Economic, Social and Cultural Rights (CESCR). “General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant).” (August 2000): 4.
29 Tao, Wenjing, Janne Agerholm, and Bo Burstrom. "The Impact of Reimbursement Systems on Equity in Access and Quality of Primary Care: A Systematic Literature Review." BMC Health Services Research 16 (2016).
30 Gavriloff, Carrie, Sarah Ostrowski‐Delahanty, and Kimberly Oldfield. "The Impact of Lean Six Sigma Methodology on Patient Scheduling." Nursing Economics 35, no. 4 (Jul/Aug 2017): 189‐93.
31 Matthew Lee, Smith, Thomas R. Prohaska, Kara E. MacLeod, Marcia G. Ory, Amy R. Eisenstein, David R. Ragland, Cheryl Irmiter, Samuel D. Towne, and William A. Satariano. "Non‐Emergency Medical Transportation Needs of Middle‐Aged and Older Adults: A Rural‐Urban Comparison in Delaware, USA." International Journal of Environmental Research and Public Health 14, no. 2 (2017): 174.
32 Park, Seri, and Tamara M. Kear. "Current State‐of‐Practice: Transportation for Patients with End Stage Renal Disease." Nephrology Nursing Journal 44, no. 4 (Jul/Aug 2017): 309‐15.
33 Satyamurthy, Shruthi M. B. A. M. H. A., and Daniel PhD Montanera. "Racial Concentration as a Determinant of Access to Health Care in Georgia." International Journal of Child Health and Human Development 9, no. 4 (2016): 3‐14.
34 Hwang, Stephen W. M. D. M. P. H., Joanna J. M. B. A. Ueng, Shirley M. A. Chiu, Alex PhD Kiss, George PhD M. P. H. Tolomiczenko, Laura BScN Cowan, Wendy M. D. Levinson, and Donald A. M. D. Mshsr Redelmeier. "Universal Health Insurance and Health Care Access for Homeless Persons." American Journal of Public Health 100, no. 8 (Aug 2010): 1454‐61.
35 Burke, Nancy J., Tessa M. Napoles, Priscilla J. Banks, Fern S. Orenstein, Judith A. Luce, and Galen Joseph. "Survivorship Care Plan Information Needs: Perspectives of Safety‐Net Breast Cancer Patients." PLoS One 11, no. 12 (Dec 2016).
36 Amirsadri, Alireza, Jaclynne Burns, Albert Pizzuti, and Cynthia L. Arfken. "Home‐Based Telepsychiatry in Us Urban Area." Case Reports in Psychiatry (2017).
37 Hsia, Renee Yuen‐Jan, and Yu‐Chu Shen. "Rising Closures of Hospital Trauma Centers Disproportionately Burden Vulnerable Populations." Health Affairs 30, no. 10 (Oct 2011): 1912‐20.
38 UN Committee on Economic, Social and Cultural Rights (CESCR). “General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant).” (August 2000): 5.
39 Grill, Kalle. "Incentives, Equity and the Able Chooser Problem." Journal of Medical Ethics 43, no. 3 (Mar 2017): 157.
40 Yi Feng, Lai, Lum Andrew Yew Wai, Ho Emily Tse Lin, and Lim Yee Wei. "Patient‐Provider Disconnect: A Qualitative Exploration of Understanding and Perceptions to Care Integration." PLoS One 12, no. 10 (Oct 2017).
41 Pega, Frank, Nicole B. Valentine, Kumanan Rasanathan, Ahmad Reza Hosseinpoor, Tone P. Torgersen, Veerabhadran Ramanathan, Tipicha Posayanonda, et al. "The Need to Monitor Actions on the Social Determinants of Health." World Health Organization. Bulletin of the World Health Organization 95, no. 11 (Nov 2017): 784‐87.
42 Chatfield, J. Seth PhD, Clinton O. PhD Longenecker, Laurence S. PhD Fink, and Jeffrey P. M. D. Gold. "Ten Ceo Imperatives for Healthcare Transformation: Lessons from Top‐Performing Academic Medical Centers." Journal of Healthcare Management 62, no. 6 (Nov/Dec 2017): 371‐83.
43 Kte'pi, Bill. "Equity and Equality." In Multicultural America: A Multimedia Encyclopedia, edited by Carlos E. Cortés Thousand Oaks, California: SAGE Publications, Inc., 2013.
44 UNESCO. “Universal Declaration on Bioethics and Human Rights.” (Oct 2015.) http://portal.unesco.org/en/ev.php‐URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html
45 Rothman and Rothman 119‐120 46 Gusmano, Michael K. "Access to Health Care." In Bioethics, edited by Bruce Jennings, 77‐81. Farmington Hills, MI: Macmillan Reference USA, 2014.
47 Powers, Madison. "Social Justice." In Bioethics, edited by Bruce Jennings, 2966-73. Farmington Hills, MI: Macmillan Reference USA, 2014. 2970-2972 48 Massetti, G. M., C. C. Thomas, and K. R. Ragan. "Disparities in the Context of Opportunities for Cancer Prevention in Early Life." Pediatrics 138, no. Suppl 1 (Nov 2016): S65-S77.
92
49 Marmot, Michael. "Achieving Health Equity: From Root Causes to Fair Outcomes." The Lancet 370, no. 9593 (2007):
1153-63. 50 Odekon, Mehmet. " Equity in Health” The Sage Encyclopedia of World Poverty Thousand Oaks, California: SAGE
Publications, Inc, 2015. 51 Rust, G., S. Zhang, K. Malhotra, L. Reese, L. McRoy, P. Baltrus, L. Caplan, and R. S. Levine. "Paths to Health Equity: Local Area Variation in Progress toward Eliminating Breast Cancer Mortality Disparities, 1990-2009." Cancer 121, no. 16 (Aug 15 2015): 2765-74. 52 Brudney, D. "Is Health Care a Human Right?". Theor Med Bioeth 37, no. 4 (Aug 2016): 249-57. 53 Hosseinpoor, Ahmad Reza, Nicole Bergen, and Anne Schlotheuber. "Promoting Health Equity: Who Health Inequality Monitoring at Global and National Levels." Global Health Action 8 (2015).
54 Wei‐Ching, Chang, and Joy H. Fraser. "Cooperate! A Paradigm Shift for Health Equity." International Journal for Equity in Health 16 (2017).
55 Odekon, Mehmet. "Equity and Efficiency Tradeoff." In The SAGE Encyclopedia of World Poverty Thousand Oaks Thousand Oaks, California: SAGE Publications, Inc, 2015. 56 Ndumbe‐eyoh, Sume, and Agnes Mazzucco. "Social Media, Knowledge Translation, and Action on the Social Determinants of Health and Health Equity: A Survey of Public Health Practices." Journal of Public Health Policy 37 (Nov 2016): 249‐59.
57 Wilkinson, G. W., A. Sager, S. Selig, R. Antonelli, S. Morton, G. Hirsch, C. R. Lee, et al. "No Equity, No Triple Aim: Strategic Proposals to Advance Health Equity in a Volatile Policy Environment." Am J Public Health 107, no. S3 (Dec 2017): S223-S28. 58 Lawrence, David M. D., Lauren M. D. Weigel, Paul M. D. Dale, Betsy Drph Smith, and Michael D. M. D. Honaker. "Presenting Stage in Colon Cancer Is Associated with Insurance Status." The American Surgeon 83, no. 7 (Jul 2017): 728‐32.
59 Latham, Stephen R. "Justice and the Financing of Health Care." In The Blackwell Guide to Medical Ethics, 341‐53: Blackwell Publishing Ltd, 2008.
60 Venkatapuram, Sridhar, Hans‐Jörg Ehni, and Abha Saxena. "Equity and Healthy Ageing." World Health Organization. Bulletin of the World Health Organization 95, no. 11 (Nov 2017): 791‐92.
61 Dharssi, Safiyya, Durhane Wong‐Rieger, Matthew Harold, and Sharon Terry. "Review of 11 National Policies for Rare Diseases in the Context of Key Patient Needs." Orphanet Journal of Rare Diseases 12 (2017).
62 Shadmi, Efrat. "Multimorbidity and Equity in Health." International Journal for Equity in Health 12 (2013): 59. 63 Rust, G., R. S. Levine, Y. Fry-Johnson, P. Baltrus, J. Ye, and D. Mack. "Paths to Success: Optimal and Equitable Health Outcomes for All." J Health Care Poor Underserved 23, no. 2 Suppl (May 2012): 7-19. 64 Cooper, L. A., T. S. Purnell, C. A. Ibe, J. P. Halbert, L. R. Bone, K. A. Carson, D. Hickman, et al. "Reaching for Health Equity and Social Justice in Baltimore: The Evolution of an Academic-Community Partnership and Conceptual Framework to Address Hypertension Disparities." Ethn Dis 26, no. 3 (Jul 21 2016): 369-78. 65 Payne, G. H., S. D. James, Jr., L. Hawley, B. Corrigan, R. E. Kramer, S. N. Overton, R. P. Farris, and Y. Wasilewski. "Cdc's Health Equity Resource Toolkit: Disseminating Guidance for State Practitioners to Address Obesity Disparities." Health Promot Pract 16, no. 1 (Jan 2015): 84-90. 66 Liao, S. M. "Health (Care) and Human Rights: A Fundamental Conditions Approach." Theor Med Bioeth 37, no. 4 (Aug 2016): 259-74. 67 UNESCO. “Universal Declaration on Bioethics and Human Rights.” (Oct 2015.) http://portal.unesco.org/en/ev.php‐URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html
68 Chapman, Audrey R., and Benjamin Carbonetti. "Human Rights Protections for Vulnerable and Disadvantaged Groups: The Contributions of the Un Committee on Economic, Social and Cultural Rights." Human Rights Quarterly 33, no. 3 (Aug 2011): 682‐732,922‐23.
69 Rogers, Wendy A., Catriona Mackenzie, and Susan Dodds. "Vulnerability." In Bioethics, edited by Bruce Jennings, 3149‐53. Farmington Hills, MI: Macmillan Reference USA, 2014.
70 "Vulnerability." In International Encyclopedia of the Social Sciences, edited by William A. Darity, Jr., 656‐57. Detroit: Macmillan Reference USA, 2008.
71 Hardy, Jan, and Tina Barrows. "Key Concepts in Public Health: Vulnerability." London: SAGE Publications Ltd, 2009.
93
72 Teunissen, G. J., M. A. Visse, and T. A. Abma. "Struggling between Strength and Vulnerability, a Patients' Counter Story." Health Care Analysis 23, no. 3 (2017-03-21 2015): 288-305. 73 Hoffmaster, Barry. "What Does Vulnerability Mean?" Hastings Center Report 36, no. 2 (2017-03-21 2006): 38-45. 74 Have, H. ten. Vulnerability : Challenging Bioethics Abingdon, Oxon: Routledge, 2016. Book. 2-3 75 Blacksher, Erika, and John R. Stone. "Introduction to Vulnerability Issues of Theoretical Medicine and Bioethics." Theoretical Medicine and Bioethics: Philosophy of Medical Research and Practice 23, no. 6 (2017-03-21 2002): 421-24. 76 Solbakk, Jan Helge. "Vulnerability: A Futile or Useful Principle in Healthcare Ethics?" London: SAGE Publications Ltd, 2011..
77 Council for International Organizations of Medical Sciences. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva: 2002.
78 Vehmas, Simo, and T. O. M. Shakespeare. "Disability, Harm, and the Origins of Limited Opportunities." Cambridge Quarterly of Healthcare Ethics 23, no. 1 (Jan 2014): 41‐7.
79 Peroni, Lourdes, and Alexandra Timmer. "Vulnerable Groups: The Promise of an Emerging Concept in European Human Rights Convention Law." International Journal of Constitutional Law 11, no. 4 (October 2013): 1056‐85.
80 Sellman, Derek. "Towards an Understanding of Nursing as a Response to Human Vulnerability." Nursing Philosophy: An International Journal for Healthcare Professionals 6, no. 1 (2017-03-21 2005): 2-10. 81 Curtis, Andrew J., and Wei‐An Andy Lee. "Spatial Patterns of Diabetes Related Health Problems for Vulnerable Populations in Los Angeles." International Journal of Health Geographics 9 (2010): 43.
82 Wilson, Sacoby, Hongmei Zhang, Chengsheng Jiang, Kristen Burwell, Rebecca Rehr, Rianna Murray, Laura Dalemarre, and Charles Naney. "Being Overburdened and Medically Underserved: Assessment of This Double Disparity for Populations in the State of Maryland." Environmental Health 13 (2014): 26.
83 Stone, John R. "Race and Healthcare Disparities: Overcoming Vulnerability." Theoretical Medicine and Bioethics: Philosophy of Medical Research and Practice 23, no. 6 (2017-03-21 2002): 499-518. 84 Engelman, Michal, Christopher L. Seplaki, and Ravi Varadhan. "A Quiescent Phase in Human Mortality? Exploring the Ages of Least Vulnerability." Demography 54, no. 3 (Jun 2017): 1097‐118.
85 Braveman, Paula. "What Is Health Equity: And How Does a Life‐Course Approach Take Us Further toward It?" Maternal and Child Health Journal 18, no. 2 (Feb 2014): 366‐72.
86 Bonevski, Billie, Madeleine Randell, Chris Paul, Kathy Chapman, Laura Twyman, Jamie Bryant, Irena Brozek, and Clare Hughes. "Reaching the Hard‐to‐Reach: A Systematic Review of Strategies for Improving Health and Medical Research with Socially Disadvantaged Groups." BMC Medical Research Methodology 14 (20144): 42.
87 National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Bethesda, Md.: The Commission, 1978.
88 18th World Medical Association General Assembly. Declaration of Helniski: Ethical Principles for Medical Research Involving Human Subjects. Helinski, Finland: (June 1964.)
89 64thWorld Medical Association General Assembly. Declaration of Helniski: Ethical Principles for Medical Research Involving Human Subjects. Fortaleza, Brazil: (Oct 2013.)
90 Bosch‐Capblanch, Xavier, Zuske Meike‐Kathrin, and Christian Auer. "Research on Subgroups Is Not Research on Equity Attributes: Evidence from an Overview of Systematic Reviews on Vaccination." International Journal for Equity in Health 16 (2017).
91 Willen, Sarah S., Michael Knipper, César E. Abadía‐Barrero, and Nadav Davidovitch. "Syndemic Vulnerability and the Right to Health." The Lancet 389, no. 10072 (2017): 964‐77.
92 Zagorac, Ivana PhD. "How Should We Treat the Vulnerable? Qualitative Study of Authoritative Ethics Documents." Journal of Health Care for the Poor and Underserved 27, no. 4 (Nov 2016): 1656‐73.
93 Drewes, Y. M., J. W. Blom, W. J. Assendelft, T. Stijnen, W. P. den Elzen, and J. Gussekloo. "Variability in Vulnerability Assessment of Older People by Individual General Practitioners: A Cross-Sectional Study." PLoS One 9, no. 11 (2014): e108666. 94 Bambas, Lexi. "Integrating Equity into Health Information Systems: A Human Rights Approach to Health and Information." PLoS Medicine 2, no. 4 (Apr 2005): e102.
95 Barnard, David. "Vulnerability and Trustworthiness: Polestars of Professionalism in Healthcare." Cambridge Quarterly of Healthcare Ethics 25, no. 2 (2017-03-21 2016): 288-300. 96 Grabovschi, Cristina, Christine Loignon, and Martin Fortin. "Mapping the Concept of Vulnerability Related to Health Care Disparities: A Scoping Review." BMC Health Services Research 13 (2013): 94.
94
97 Tavaglione, Nicolas, Angela K. Martin, and Nathalie Mezger. "Fleshing out Vulnerability." Bioethics 29, no. 2 (2017-03-21 2015): 98-107. 98 Martin, Angela K., Nicolas Tavaglione, and Samia Hurst. "Resolving the Conflict: Clarifying 'Vulnerability' in Health Care Ethics." Kennedy Institute of Ethics Journal 24, no. 1 (Mar 2014): 51‐72.
99 UNESCO. “Universal Declaration on Bioethics and Human Rights.” (Oct 2015.) http://portal.unesco.org/en/ev.php‐URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html
100 Gardner, Wendi L., and Kristy K. Dean. "Interdependent Self‐Construals." In Encyclopedia of Social Psychology, edited by Roy F. Baumeister and Kathleen D. Vohs, 490‐92. Thousand Oaks, CA: SAGE Publications, 2007.
101 Adolphs, Ralph. "Cognitive Neuroscience of Human Social Behaviour." Nature Reviews. Neuroscience 4, no. 3 (Mar 2003): 165-78.
102 Kilpatrick, Shelley Dean. "Helping Behavior." In Encyclopedia of Social Psychology, edited by Roy F. Baumeister and Kathleen D. Vohs, 420-24. Thousand Oaks, CA: SAGE Publications, 2007. 103 "Declaration of Professional Responsibility Medicine's Social Contract with Humanity." In Encyclopedia of Bioethics, edited by Stephen G. Post, 2692. New York: Macmillan Reference USA, 2004. 104 Powers, Madison. "Social Justice." In Bioethics, edited by Bruce Jennings, 2966-73. Farmington Hills, MI: Macmillan Reference USA, 2014. 2966 -2970 105 Hsieh, Ching-Hsing PhD R. N. "A Concept Analysis of Social Capital within a Health Context." Nursing Forum 43, no.
3 (2008): 151-9. 106 Dinda, Soumyananda. "Inclusive Growth through Creation of Human and Social Capital." International Journal of
Social Economics 41, no. 10 (2014): 878-95. 107 Madsen, Richard. "Individualism." In Encyclopedia of Community, edited by Karen Christensen and David Levinson, 648‐51. Thousand Oaks, CA: SAGE Reference, 2003. 108 Zimmerman, Michael J. "Responsibility." In New Dictionary of the History of Ideas, edited by Maryanne Cline Horowitz, 2110‐12. Detroit: Charles Scribner's Sons, 2005.
109 Kaufman, Arnold S. "Responsibility, Moral and Legal." In Encyclopedia of Philosophy, edited by Donald M. Borchert, 444‐51. Detroit: Macmillan Reference USA, 2006.
110 Kerby, Rob. "Welfare and Poverty." In Encyclopedia of Politics, edited by Rodney P. Carlisle. The Left, 489-91. Thousand Oaks, CA: SAGE Reference, 2005. 111 "How to Increase Socially Responsible Change." In Change Management Excellence, edited by Sarah Cook, Steve Macaulay and Hilary Coldicott, 210-14. London: Kogan Page, 2004. 112 Krieger, N. "Health Equity and the Fallacy of Treating Causes of Population Health as If They Sum to 100." Am J Public Health 107, no. 4 (Apr 2017): 541-49. 113 Jones, David S. M. D. PhD, Scott H. M. D. Podolsky, and Jeremy A. M. D. PhD Greene. "The Burden of Disease and
the Changing Task of Medicine." The New England Journal of Medicine 366, no. 25 (2012): 2333-8. 114 Kronenfeld, Jennie, Wendy Parmet, and Mark Zezza. "Debates on U.S. Health Care: Health Care as a Human Right." Thousand Oaks, California: SAGE Publications, Inc., 2012.
115 Kopolow, Andrew M., and Louis E. Kopolow. "Corporate Social Responsibility in Health." In Bioethics, edited by Bruce Jennings, 715‐18. Farmington Hills, MI: Macmillan Reference USA, 2014.
116 Ahola‐Launonen, Johanna. "The Evolving Idea of Social Responsibility in Bioethics." Cambridge Quarterly of Healthcare Ethics 24, no. 2 (Apr 2015): 204‐13.
117 Christiansen, Isaac. "Commodification of Healthcare and Its Consequences." World Review of Political Economy 8, no. 1 (Spring 2017): 82‐103.
118 Bustreo, Flavia, and Paul Hunt. "The Right to Health Is Coming of Age: Evidence of Impact and the Importance of Leadership." Journal of Public Health Policy 34, no. 4 (Nov 2013): 574‐9.
119 Turner, Bryan. "The Rights of Age: On Human Vulnerability." In Sociology and Human Rights: A Bill of Rights for the Twenty-First Century Thousand Oaks, California: SAGE Publications, Inc., 2012
120 Osuji, Onyeka K., and Ugochukwu L. Obibuaku. "Rights and Corporate Social Responsibility: Competing or Complementary Approaches to Poverty Reduction and Socioeconomic Rights?" Journal of Business Ethics 136, no. 2 (Jun 2016): 329‐47.
121 Hunt, P. "Interpreting the International Right to Health in a Human Rights-Based Approach to Health." Health Hum Rights 18, no. 2 (Dec 2016): 109-30.
95
Chapter 3: Patient Care Quality & Patient Safety
3a Patient Care Quality & Patient Safety as a Function of Human Rights
Patient care quality is a function of human rights. For humans to meaningfully exercise
their human rights, they must be healthy and vice versa. This section will first define quality in
health care and then discuss quality in terms of human rights.
Quality in health care can be partially defined through the “triple aim” of health care
quality: care quality, patient experience and cost. Quality care also encompasses patient safety.
First, this section will provide definitions for these key components of quality in health care.
Second, this section will describe how these aims of quality in health care should be incorporated
with discourse on the human right to health. This includes the imperative to reduce disparities in
health care and defining standards of care that should be protected. Although a conceptual
definition of health and human rights has already been developed, ways in which this right
should be carried out or carried out in the everyday practice of health delivery organizations has
not yet been defined. This section will explain how the right to health specifically requires that
all individuals have access to quality health care.
3ai Defining Quality in Health Care
Quality in health care encompasses patient safety, health outcomes, associated processes,
patient experiences and costs that result from health care delivery. Patient safety requires that a
patient protected from harm, avoidable adverse events and medical error. The “triple aim” of
quality is also useful in this description, which describes improving health, improving patient
experience, and reducing costs.1 Assessment of overall quality in health care should include
considerations of these four domains.
96
Patient Safety
Patient safety includes prevention of medical errors, prevention of avoidable adverse
events, protection of patients from harm or injury, and healthcare provider collaboration within
the integrated health system.2
In 2000, patient safety rose to prominence through the Institute of Medicine (IOM)
released a landmark report: To Err Is Human: Building a Safer Health System. To Err Is Human
reported that 44,000-98,000 people die in hospitals because of medical error each year.3 In 2001,
the IOM followed up on To Err is Human with Crossing the Quality Chasm: A New Healthcare
System for the 21st Century. Crossing the Quality Chasm Six aims for improvement, stating that
health care should be safe, effective, patient‐centered, timely, efficient, and equitable.4 Following
these reports, the Joint Commission established the National Patient Safety Goals in 2002.5
These have evolved since their initial development and, as of 2018, include goals in the areas of
ambulatory health care, behavioral health care, critical access hospitals, home car, hospitals,
laboratory services, nursing care centers and office-based surgery.6 The National Quality Forum
(NQF) also developed a list of serious reportable events. These include serious, largely
preventable harmful clinical events in the domains of surgical or invasive procedures, products
or devices, patient protections, care management, environmental events, radiologic events, and
potential criminal events.7 Other programs to reduce patient safety events include the Centers for
Medicare and Medicaid services (CMS,) the Institute for Healthcare Improvement (IHI) and the
Agency for Healthcare Research and Quality (AHRQ.)
The Centers for Medicare and Medicaid Services (CMS) has implemented initiatives to
improve patient safety through reimbursement programs. These include reimbursement-related
incentives tied to patient safety indicators (PSIs) such as death among surgical inpatients with
97
serious treatable complications.8 The Institute for Healthcare Improvement (IHI) has also
focused on patient safety and safety culture. The IHI works with health care providers to develop
integrated safety across the continuum of care, leadership methods to address safety, and
approaches to address patient safety issues.9 In addition, the AHRQ has developed tools and
resources for health care delivery systems and providers to improve patient safety.10
Organizations that focus on improving patient safety address the need for a patient safety
culture. Patient safety takes more than capital investment in buildings and infrastructure; It
requires organizational management approaches and targeted strategies to promote safety
culture.11 There are various tools that can help health care leaders to develop a culture of safety
within their organizations. A culture of safety must be implemented wisely, however, where
adverse events versus preventable adverse events versus negligent error are assessed.12 An
effective assessment of events and errors involves the integration of a just culture within the
culture of safety. A just culture requires that administrators recognize errors from faulty systems
but also hold staff responsible for choices, holding them accountable when necessary.13 A just
culture will help health care administrators, providers and staff to face accountability without
unnecessary blame. Safety incidents are usually due to faulty systems.
Faulty systems are often seen in communication and patient transition events. Common
safety incidents related to patient transitions, such as referrals and discharges, can be addressed
by developing a structured, integrated approach to transitional safety.14 There are clear roles for
health administration, providers, and staff in transitional safety. During shift-handoffs, nursing
staff have a high risk of communication related safety events. Intra-shift handoff effectiveness
has a significant impact on patient safety. Leaders should promote intra-shift handoff
communication by valuing nursing knowledge, supporting improvements in safety culture with
98
positive working relationships, facilitating open dialogue, providing adequate staffing resources,
allowing for sufficient time with patients, decreasing distractions and noise, providing dedicated
handoff time, minimizing concomitant meetings, providing opportunities for continued learning,
and providing structured but flexible written tools for handoff.15 Clear communication between
shift handoffs, as well as interdisciplinary communication among providers and staff can reduce
avoidable adverse events. Transparency is also a useful tool for improving communication and
clarity of patient hand-offs and interdisciplinary communication.
Transparency can be used to improve leadership accountability, clinician engagement,
patient trust, and a culture where identification and investigation of errors generally promotes
discussion rather than blame.16 An example of transparency in practice is morbidity and
mortality conferences. Morbidity and mortality conferences can be useful communication tools
to address safety issues, but they need to use a structured method for analyzing cases and need to
connect improvement-related decisions with actions and a timeline.17 Transparency and
communication must lead to actionable responses to reducing future errors.
Solutions for improving communication can include innovation and technology. Health
technology can help with preventing adverse events by improve communication, providing point
of care references, assisting with calculations, performing monitoring functions, facilitating
hand-offs, and providing clinical decision support.18 Although technology can be useful in
improving patient safety and reducing errors, technology use often meets barriers at to
integration. Barriers to integration of electronic patient safety reporting systems include
underreporting and low quality of reports, acceptance and effective use of systems, inadequate
instructions and training, lack of reporter-friendly classification, and lack of time and lack of
99
feedback.19 Leaders of health care delivery systems should address these barriers to ensure
smooth transitions and implementation of technology solutions to impact patient safety.
The patient also has a role in patient safety, and should be considered to be part of the
patient safety team, in addition to administration, health care providers and staff. A patient’s
participation in engagement with safety is influenced by factors such as knowledge, health
condition, beliefs, and experiences, and can be encouraged through professional development of
providers, focusing on patient-centered care, and clearly defining roles of the patient, staff, and
physicians.20 When providers work together with patients and involve patients in the patient
safety process, the patient is able to act as a barrier to medical error, empowered to be their own
advocate.
There are many ways that health care leadership, providers, staff and patients can
promote patient safety to reduce avoidable adverse events. Reliability-seeking organizations can
reduce safety incidents, improve staff perceptions of the organization, and reduce costs by
standardizing processes, promoting checks while avoiding redundancy, equalizing authority,
developing communication skills and promoting teamwork processes.21 Initiatives in these areas
can improve patient safety when developed and implemented systematically across the health
delivery system.
Although patient safety is a critical first step, it does not paint the whole picture of health
care quality. Clinical outcomes, process, patient satisfaction, and cost complete the health care
quality continuum.
100
Clinical Outcomes & Process
Clinical quality includes outcomes and process measures. Outcomes measures for quality
are useful because they show whether a desired result in patient care was achieved or not.
Resources for quality improvement are often limited, so a health system needs to prioritize
indicators that will have the greatest expected impact in terms of net health benefits, the number
of people effected in population, current compliance with measure, probability for quality
improvement and effectiveness of quality improvement.22 Outcomes measures achieve these
goals since they show results that directly affect the patient’s health.
Since improving patient health is the goal of a health care system, outcomes measures
may seem to be the most obvious way to measure health care quality. However, using outcomes
measures has challenges and there are many barriers to defining meaningful quality outcome
indicators.
First, determining which outcome measure is appropriate and how it should be defined
warrants serious consideration. A needs assessment should be performed before developing
quality indicators for monitoring, and should include assessment on illness burden, opportunity
for improvement, the connection between improving care and improving health, and gap
assessment for existing indicators.23 If criteria in these categories are not met, then a selected
outcome measure may not be the best indicator of quality patient care.
In addition, outcomes reporting for quality must incorporate an ethical framework to
avoid the selection of unjust or inappropriate measure. This is especially important when quality
data is reported to consumers. An ethical framework should be used to guide development and
implementation of quality reporting for consumers, in order to ensure data legitimacy, integrity
and quality, transparency, informed understanding, equity, privacy and confidentiality,
101
collaboration, accountability and evaluation.24 Consumers must be given an appropriate
explanation of context and methodology for quality measures reported to them, or there is a risk
of misrepresenting the care quality of a specified health care entity or entities.
Certain measures may be misrepresented and unfair comparisons between organizations
may occur if quality indicator definitions are not comprehensive. For example, the interpretation
of readmission data depends on whether planned and unplanned readmissions are both included
or not. Planned readmission may, in fact, be an indicator of good care quality, while unplanned
readmissions could be an indicator of surgical or nonsurgical complications.25 If both types of
readmissions are included and this information is distributed to the health care consumer, it may
be impossible to tell which organizations have better quality since data that could indicate both
good quality and bad quality are compounded into one measure.
The error of choosing a measure simply because it is easily measured and collected
should be avoided as well. Instead of simply prioritizing time and cost-effective quality measures
(which can be counterproductive,) health care organizations should look for valid quality
measures are clinically meaningful, transparent, supported by scientific evidence, link process to
health outcomes, consider anticipated benefits and harms, are reported to all appropriate
stakeholders, and balance the time and resources required for data with anticipated benefits of
the metric.26 If a measure is chosen that does not have real meaning for quality, any time and
effort on collecting and reporting that measure will be wasted and add inefficiency to the health
care system. It could also contribute to loss of credibility in the eyes of health care providers
when assessing future quality reporting, even if future reporting is improved in its methodology.
Outcome measures can be a useful tool to measure health care quality, but should be
developed with sound methodology. Hospital governing boards can help to ensure that sound
102
quality indicators are chosen. Hospital governing boards are associated with better quality
outcomes when they have a board quality committee, establish strategic quality improvement
goals, are involved in quality agenda-setting, include quality on board meetings, look
benchmarked data, and link senior executive evaluation to quality measures.27 The board can set
the environment in which quality outcome assessment is given the appropriate amount of
thought, attention and time. Other hospital leadership and organizational structure is also
important for the valid development and application of quality outcome monitoring. In general,
the success of a quality improvement program depends on context and organizational cultural
factors including leadership from top management, organizational culture, and data
infrastructure.28 Outcome measures can be very useful to assess health care quality. Process
measures can also be used to assess quality, and can complement and balance quality outcome
reporting.
Process measures are often chosen to assess health care quality since they can be more
straightforward in definition than outcome measures. A process measure simply states how often
a defined process (or piece of a defined process) was completed or not. Choosing a process
measure that indicates quality, collecting accurate data reflective of the process, and determining
how to define the population for which the process measure should be applied are the major
barriers to defining meaningful process measures for quality assessment. Process measures
should always be directly tied to a desired health outcome. In order to ensure accurate
associations between specific processes and outcomes, quality indicator measure selection
should include assessments on the proximity of the outcome to the process, power to detect
differences, the ability to explain or control for confounding factors, and stability of measure
specifications over time.29 The process measure should be closely tied to the desired outcome,
103
there must be power in the process to create a positive difference in the desired health outcome,
the process measure must be directly causal of the desired outcome (confounding factors must
not explain the change) and measurement must be possible over time. If these criteria are met,
then the process measure should have a sound definition.
Defining process measures is the first step to developing valid process measures;
However, even if the process measures have been well-defined, data analysis for the defined
process measure still can create barriers and challenges to effectively use process measures for
quality assessment. Information systems can help to monitor and improve performance of health
care providers, but steps should be taken to ensure that data definitions are accurate, that
measurements correlated with quality improvement, and that both process and outcomes
measures are considered.30 Data entry, abstraction, and interpretation must all be systematically
and accurately carried out.
Process measures ae important because they are often the cause (or source of prevention)
of quality outcomes. Incidence of adverse medical events, which are typically tracked by a
hospital’s risk management or quality assurance departments, often result from system failures
such as inadequate communication, inappropriate staffing levels, lack of training, and poor
patient handoff processes.31 If the processes associated with these failures are fixed, quality
outcomes may also be fixed if it is directly correlated with the process.
Process measures include not only data analysis and reporting, but also quality
improvement methodology and quality improvement tools. Quality improvement tools should be
developed through staff engagement, local input, and experience-based design to adequately
interpret and frame the social context of the health care organization, including political systems,
relationship dynamics, language, assumptions, perceptions, and culture.32 These tools are used to
104
effect change in a process, and therefore its associated outcome measure. Quality process
improvement tools should be developed within the context of an individual health care
organization, considering the social confines of the organizational structure and leadership.
There are many types of process improvement tools. Surgical process improvement tools,
such as structured communication tools, clinical mapping tools, and error reduction instruments
can help to standardize and coordinate care, can reduce variations in delivery patterns and
outcomes.33 Other tools can be used to reduce variation as well. Six Sigma can be used can be
integrated into an organizations current quality improvement program to reduce error, eliminate
defects and achieve efficiency.34 Reducing variation in a process is essential since variation from
the best pathway of care often indicates error.
Other methods of effecting positive change in quality and process improvement involve
leadership development. Leadership development can improve quality and efficiency when it
results in workforce improvements, enhanced education and training activities, reduce turnover,
and identify specific strategic priorities.35 Educating the staff and providers within a health care
organization is an important part of process improvement within a health care organization.
The process for quality assessment and improvement itself can be a positive change for
quality in a health care organization. For example, a fractal system could be implemented to
organize workers around common goals, link hospital levels, support peer learning, provide
accountability, and encourage local solutions while using existing available resources.36 This
would create new processes and pathways to develop quality improvement tools while not
requiring a huge burden on already finite resources. This is only one of an infinite number of
processes that could be changed with the goal of affecting health care quality. The needs and
context of the health care organization will dictate what type of intervention is needed, so
105
process improvement methodology, implementation and monitoring should usually be completed
at the individual hospital or health care organization level.
Process measures are direct, easy to interpret, and sensitive to differences in care quality,
though they do not reflect all aspects of care like outcomes measures, while outcomes measures
include potential inconsistencies with data collection and difficulty of proper risk adjustment are
major disadvantages.37 Interventions to take care of patients with multiple health problems
should address the interrelatedness of comorbidities in lieu of looking for simple solutions which
may be ineffective.38
Each of these quality indicator types have strengths and weaknesses. They are
complimentary in nature and should be used together to assess the overall quality of health
delivery. Process and outcomes are important ways to measure care quality in health care. Patient
satisfaction or patient experience is also a crucial component to the assessment of health care
quality.
Patient Satisfaction
Patient satisfaction is a key indicator of health care quality. It is directly related to the
patient’s experience with the health care system and affects both real and perceived care quality
to the patient. Patient satisfaction has a reciprocal relationship with quality processes and
outcomes. If patient satisfaction is improved, outcomes and processes of care can be improved. If
Outcomes and processes of care are improved, then patient satisfaction may be influenced. For
example, patient satisfaction with service quality and timeliness of care are an independent
predictors of breast cancer survival.39 Likewise, some patient satisfaction measures can be
improved through improvement in quality processes and outcomes.40 Patient satisfaction is
inextricable from other care quality indicators, and is also an important quality indicator itself.
106
Patient experience can be influenced by several factors. For example, patient satisfaction
has been predicted by factors such as meeting preoperative expectations, satisfaction with pain
relief, and satisfaction with the overall hospital experience.41 Interactions with nursing can also
influence patient satisfaction. In fact, nurse job satisfaction can improve the perception of quality
of care by patients.42 All interactions that a patient experiences in the health context may affect
their reported satisfaction. Patient satisfaction can even be influenced after discharged through
processes of follow-up care. For example, proactive telephone follow-up by staff has been an
effective method to enhance quality and patient perception of care, resulting in higher patient
satisfaction and early identification of side effects.43
Assessment on variables that influence patient satisfaction, such as patient expectations,
can be completed through patient satisfaction surveying.44 Surveying can ask patients directly
about their self-reported experiences with the health system. The data can then be aggregated and
analyzed for trends, ultimately pointing to opportunities for quality improvement.
Patient satisfaction is an important indicator of health care quality and can be measured
through surveys that allow patients to self-report their experiences. Patient satisfaction can be
influenced and enhanced by many approaches to patient care, and can be especially influenced
by an approach of shared decision-making.
Shared decision-making is a process that can directly affect the quality of patient care
through enhancing patient engagement. This occurs via an established collaborative relationship
between the physician and the patient. There are three essential elements of shared decision-
making: recognizing the need for a decision, understanding the best evidence, and incorporating
the patient’ values and preferences.45 The physician and patient must both accept and recognize
that a decision needs to be made, discuss and create a mutual understanding about the patient’s
107
values, discuss evidence that could possibly affect the decision, and then incorporating the
patient’s values into the possibilities to land on a choice that is the best for the patient given their
particular values and circumstances.
Shared decision-making can be facilitated through validated tools that help both the
patient and physician communicate about treatment options and values. Standardized decision
aids, such as written materials, videos and interactive electronic presentations, can help patients
clarify their values, determine how those values relate to decision, analyze information about
treatment options, and weigh risks as well versus the likelihood of achieving their treatment
goal.46 These types of decision tools should be used when they can help to facilitate
communication between the physician and the patient.
Shared decision-making can have a positive impact on care quality and patient
satisfaction. However, sharing responsibilities of decision-making should follow a logic of care
rather than a logic of choice, since a logic of choice may impose a burden on some patients.47
Shared decision-making is for both parties (physician and patient) to come together to agree on a
process for decision-making that works for them within their individual context. This will help to
ensure that shared decision-making is consistent with the values of patient-centered care.
Patient-centered care puts the values and needs of the patient at the center of focus for
health care decision-making. It includes elements of governance priority, culture of continuous
improvement, IT best practices, evidence protocols, optimized resource use, integrated care,
shared decision-making, targeted services, embedded safeguards, and internal transparency.48
Often, patient-centered care is carried out through a medical home model. A patient centered
medical home model can help with the development of long-term relationships between
physician and patient and care coordination.49 Approaches of shared decision-making and
108
patient-centered care can help to ensure that patients are heard and that their satisfaction is
prioritized.
In to shared decision-making at the patient level, community shared-decision making can
help to improve quality at the community level. It can help to engage local consumers on health
care decision-making early and consistently for perspective on governance decision-making,
program design and implementation, and information dissemination.50 If members of the
community are involved in health care governance, a foundation of shared decision-making can
be established for all patients, where the needs of patients and the community are incorporated
both at the policy level and the individual patient level.
The last major component of health care quality assessment is cost.
Cost
The cost of health care is important to health care quality because it is part of the
equation for health care value. Health care resources are, by nature, finite and prioritization
based on ethical analysis and value calculations are essential to ensure that resource allocation is
not unjust.
The approach to cost savings in health care at the organizational level requires
opportunity analysis and process improvement. Methods that work for an individual health care
organization will be context-specific. Some methods that can be used to achieve quality-based
savings are effective data system and management structures, regular feedback based on data,
change oversight, risk adjustment, incentive alignment and using local clinical teams.51 For cost
analysis, in addition to care quality analysis, patient risk must be considered before interventions
can be developed based on raw data. A stratified approach based on patient risk can be helpful to
avoid undesirable outcomes, patient experience and cost measures.52 Distribution of data related
109
to cost and other quality measures should also be stratified or adjusted for risk to avoid
misleading data presentation.
Consumers of health care want to see data on cost and quality. Consumers want to see
quality data on physician level and cost data for personal out-of-pocket expense, so there is a
need to pull together data sources for integrated, timely, and relevant consumer health care
reporting. 53 Determining a methodology for putting together these key measures would create a
relatively comprehensive consumer reporting system for health care. Cost and quality reported
together represent value of health care.
Most importantly, health care organizations should facilitate quality through an ethics
lens. Using ethical standards as a foundation for developing quality improvement activities can
help to prevent inadvertently causing harm, wasting resources, or contributing to inequalities.54
Specifically, quality in health care should be approached from a human rights perspective to
ensure that health care delivery is equitable, respect for human vulnerability is maintained and
organizational social responsibility is realized.
3aii Provision of Quality Health Care as a Human Right
The basic right to health and health care that fall into three domains: the basic moral
domain, the legally enforceable political domain, and the international domain (or domain of
relations between different political societies.)55 These three domains – individual/moral,
political/legal, and global – generally provide the existing framework for human rights and
health discourse. This framework lacks crucial domain in health and human rights discourse,
however: the organizational domain. The organizational domain exists as a layer between the
basic moral domain and the political domain, and is an essential missing piece to this framework.
The health care organization is the functional domain is where the right to health is carried out.
110
Human rights are carried out in the organizational domain through the function of health care
quality.
Human Right to Quality Care
The right to health should be understood as the right to health care due to its role in
protecting basic human interests.56 Quality health care is essential for humans to thrive and to
realize other rights. This right to quality health care is supported by the United Nations 2030
Agenda for Sustainable Development, which outlines a plan to eradicate poverty, eliminate
hunger and ensure that all human beings can fulfil their potential in dignity and equality,
including equitable and universal access to quality health care where no one must be left
behind.57 Health care disparities must be eliminated and all persons must have access to quality
care, regardless of their social position.
The human rights lens on health provides context and understanding for where there are
disparities and injustices, but they need to be taken a step further than understanding to be
operationalized. 58 This is where health care organizations have a duty to carry out the human
right to health through the provision of quality health care for all individuals. The right to health
provides the foundation for why all individuals have the right to quality health care, but it does
not currently specify how this right is to be carried out or applied in context. Although there are
other key factors to enjoying health, quality health care is essential for almost all humans to
realize their highest attainable level of health.
Other important factors are environmental determinants, such as access to clean drinking
water and healthy food. If an individual is not receiving these basic environmental determinants
of health, the health care organization can care for the patient and provide a structure to identify
and assess whether unhealthy environments are experienced by an individual The organization
111
can then provide a structure to help coordinate improvements in the patient’s environment,
whether they be community or individual interventions.
Once the right to health is defined, there is a need for detailed policy prescriptions and
accountability.59 This means that the government has a role in oversight and policy that will
support health care organizations in providing equitable, quality health care. Health care
organizations should work with their federal, state and/or local government to ensure that the
right to quality health care is being protected and that accountability for this provision is
adequately expressed. The government will also need to provide support and resources for the
health care organization to provide quality health care, especially in systems where there is one
or more government payment system for health care services. The rights will be enacted through
the organizational structures and processes to improve quality and monitored through
organizational metrics of process measures, outcomes measures, patient satisfaction measures,
and cost.
In terms of reporting, standardization and accountability are also important at both the
government and organizational level. Accountability measurements for human rights should be
standardized to ensure accurate reporting and that definitions do not change over time.60 Health
care organizations should work with governmental regulatory and oversight bodies to develop
and enact reporting to monitor the success of interventions that protect human rights, related to
the provision of quality health care. Standardized reporting is essential for tracking outcomes of
interventions and policies over time. If the reporting metrics are not stable and definitions
change, it will be impossible to see whether interventions had an impact on the desired outcomes
and whether those outcomes are trending in the right direction.
112
Health care organizations also have an obligation to human rights based on their
corporate or business characteristics. Like corporations, health care organizations have social
responsibilities. Corporations have a responsibility to protect, respect and remedy human rights
when they are in the position to do so.61 If non-health care organizations and corporations have
these duties, then health care organizations experience these duties to an even greater extent.
Health care organizations are in a great position to directly remedy human rights, namely the
right to the highest attainable level of health.
Likewise, multinational enterprises have a duty to protect human rights.62 Although
health care organizations are not usually multinational, they have a duty to protect rights within
their own country, just like a multinational enterprise has the duty to protect rights across all of
the countries they have business encounters in. Health care is a service industry but is also a
business, and has parallel obligations of business. However, health care organizations also have
duties that expand upon those of a business since they are commonly mission-driven with
established organizational values. In addition, the social nature of the health care organization,
and its place in the social structure of the community in which it operates gives it special duties
on top of what other for-profit organizations or corporations may have.
If corporations and multinational enterprises have an obligation to protect human rights,
then so do health care organizations. In fact, health care organizations have more of an obligation
than a non-service oriented corporation since their explicit mission is to improve the health of the
individuals and population they serve. A health care organization’s duties are inextricably tied to
their mission and reason for being, which is to promote and protect health. Naturally, this points
the health care organization into the position where protecting the right to health is within the
organizational purview, and should be tied to the organizational mission.
113
Human rights related to health give a method of analysis and framework for action to
shape specific intervention, including applying health and human rights framework to practice.63
Health care organizations should use human rights as a basis for developing interventions to
protect and promote health care quality, thereby reducing disparities in health care and
supporting human dignity.
A human-rights based approach can be applied to all quality improvement phases
including conceptualization, design, implementation, monitoring and evaluation, and can
ultimately help to focus outcomes on disparities and gaps in services provided and opportunities
for greater inclusion.64 Human rights should be used as the foundation to improve quality in
health care, and quality in health care should support human rights related to health. The right to
health requires that health care organizations provide quality health care for all individuals.
Ethical Responsibilities of Health Care Organizations
The United Nations Guiding Principles on Business and Human Rights outlines specifics
of the protect, respect and remedy framework that can be used to define duties and
responsibilities of governments and health care organizations. The protect, respect, and remedy
framework is a principles-based conceptual and policy framework aimed at protecting human
rights through state duty to protect against human right abuses, corporate responsibility to respect
human rights, and effective access to remedy human rights violations.65 According to these
principles, states must take appropriate steps to prevent, investigate, punish and redress abuse
through effective policies, legislation, regulations and adjudication; businesses must address
adverse human rights impacts where they are involved, seek to prevent or mitigate adverse
human rights impacts directly linked to their operations, products or services; and there should
be access to remedy where states make appropriate steps to ensure access to effective judicial or
114
non-judicial remedy of human rights violations.66 The protect, respect, and remedy framework
offers a starting point for outlining the responsibilities of governments and health care
organizations to protect human rights related to quality health care but these definitions must be
expanded for practical application.
Health care organizations or delivery systems are responsible for creating and sustaining
quality in health care, but the measurement of quality is often dictated or guided by
governmental regulatory programs and payor financial incentives. These can include measures of
outcomes, process, satisfaction or cost. Regulatory policies and financial incentives can support
health care quality, but they can also present barriers to quality if they are poorly designed. For
example, poorly aligned or fragmented financial incentives can impinge on the patient’s
awareness of value or fail to adequately address provider accountability.67 Likewise,
governmental regulatory bodies can fail to support health care quality if they are not well-
designed. The health care organization, therefore, plays a crucial role in facilitating and ensuring
quality patient care processes, outcomes, patient satisfaction and cost. Health care leaders must
follow government and regulatory systems for quality assessment, but must also consider ways
to assess quality on the organizational level.
The World Health Organization’s offers general, broad global standards for government
responsibility and health policies and creates some legal accountability, but is vague in standards
for giving specific mandates to operationalizing rights.68 Health care organizations are the locus
of where these rights will be enacted, and where the power lies to affect change in health care
quality improvement. This gives them the duty to uphold these rights by providing quality health
care for all individuals. International organizations and governments provide some oversight, the
115
foundation and groundwork for human rights to be enacted, but are neccesarily implemented at
the organization level.
Part of the governmental duty to protect human rights related to quality health care is
providing universal access, which the United States has yet to achieve. On a national level, the
United States Congress and the Supreme Court have contributed to the evolution inconsistent
framework with an incomplete set of rights, with some but not all rights defined regardless of
ability to pay, including the Emergency Medical Treatment and Active Labor Act (EMTALA),
Medicare, Medicaid, the Children’s Health Insurance Program (CHIP) and the Patient Protection
and Affordable Care Act (ACA.)69 When a government body has a piecemeal approach to the
provision of health care without universal access, it is not supporting optimal provision of quality
health care and thus not supporting the human right to quality health care. To clarify universal
access, a specific, basic minimum of care should be defined to prioritize efficiency, comparative
effectiveness, cost-effectiveness, contextual factors (including the value of hope and the increase
in value we see in life when reference points change,) and underlying common values.70
Government bodies should consciously work toward defining and achieving a basic minimum
threshold for health care services provided, as well as care quality criteria in the categories of
process, outcomes, patient satisfaction and cost.
States can help to support this mission where health care organizations fail. Federally
supported health centers can help to address health care disparities and barriers to meaningful
health care access in underserved communities by providing comprehensive preventative
primary care, focusing on vulnerable populations, encouraging consumer participation, providing
enabling services, cultural and linguistic sensitivity, community partnership, and continuous
quality improvement.71 States have obligations to human rights and health, but the provision of
116
quality in health care is ultimately in the control of health care organizations, giving them the
ultimate responsibility for protecting these rights.
The right to health means the right to the highest attainable standard of health, inclusive
of freedoms and entitlements, requiring that all services, goods and facilities must be free from
discrimination, available, accessible, acceptable and of good quality.72 The right to quality health
care without discrimination is an essential part of these inclusions. Based on the provision of
quality health care is a human right, both governments and health care organizations have
obligations to protect this right and mitigate disparities in health among the populations they
serve.
The intention of the UN “protect, respect remedy” framework is to give guidance for
corporate behavior related to human rights and can be used to close gaps between perceptions of
justice within social institutions, given that culture and morals not universal and there may be
competing perceptions of justice within an institution.73 Human rights provides a language for
health care organizations to find a common definition of ethical management and practice.
Human rights discourse is used to create a common moral value, vocabulary and framework for
accountability.74 In this way, health care organizations can use human rights as the foundation to
ensure that quality health care is accessible to all. This will include outcome, process, patient
satisfaction and cost of health care. Based on human dignity, individuals have the rights to
achieve the highest obtainable level of health. As described, this can be measured through
process and outcomes measures and also reflected in satisfaction with health and health care. In
addition, cost can be incorporated into quality assessment since it directly reflects upon value
experienced in health care and in a broader sense relates to health care priority setting.
117
The corporate responsibility to protect human rights is especially relevant for health care
organizations based on their inextricable relationship with protecting and promoting human
rights, specifically the right to health. Corporations are social institutions, and health care
organizations have unique social responsibilities since they provide essential services for social
well-being.75 The mission of health care organizations as providers of a social good give them
the responsibility to respect and promote that social good. They must do this by setting and
achieving standards of the human right to quality health care.
Standards of human rights are based on the common value of dignity and equality of
human beings.76 Specific health-related human rights should be operationalized by health care
organizations and should focus carrying out the provision of quality health care for all
individuals. Specific standards for how to provide quality health care should be defined. These
standards should be measured through quality reporting and measurement, including process,
outcome, and patient satisfaction metrics. Cost should also be considered due to its potential
impact on population health.
Human dignity is the basis for developing standards that protect the human right to
quality health care and human rights support and protect the absolute human inner value of
dignity, which is present by virtue of being human and is what calls for certain universal rights.77
Health care organizations have an obligation to protect this dignity, as dictated by the
foundations laid by health and human rights discourse. Standards should specifically be included
in all of the buckets of quality, including process, outcomes, satisfaction, and cost, and should be
refined on the individual organizational level to ensure the ability to implement these standards
at the local level. This means that the outcomes for human rights may be uniform for all
hospitals, but the processes and structures to achieve those outcomes may differ. The scope of
118
human rights obligations for corporations should be defined, rather than relying on due diligence,
which gives leeway in moral commitment.78 In addition, respect for human rights at the
organizational level should be monitored by the state government. Although there is a need for a
common set of standards to measure the respect for human rights by corporations, this standard
has yet to be created.79 Nonetheless, organizations should be proactive in respecting and
promoting human rights within their organizations. Approaches to achieve suitable standards for
the protection of human rights can include physician engagement, communication strategies, and
integration with hospital governance.
Physician leaders should be engaged to ensure health care quality. Four critical
components should be considered when engaging with physicians: choosing the right physician
leader, providing access to relevant quality and cost data that physicians trust, utilizing evidence-
based care guidelines, and creating culture of individual accountability.80 These four components
can help to achieve goals of the human right to quality health care.
Communication strategies can also be used to promote the right to quality health care
within a health care organization. Organizations can improve communication strategies including
interventions that are message-based, training-based, technology-driven, community-driven, and
policy-driven, activist interventions.81 These approaches can be used to effectively communicate
with patients and internally within the health care organization in order to support the provision
of quality health care.
Hospital governance also plays an important role in the protection and promotion of
human rights within the health care organization. The role of hospital governance is to enact
social responsibility through a shared vision of common, promotion of shared values and
common ethical standards to create organization value.82 Founded in human rights, this can be an
119
effective way to promote care quality and reduce disparities for populations served by the
organization.
Health care governance has a unique role to play in the protection of human rights within
its organization. Differentiations between governance, management and clinical can be defined
as follows: clinical governance encompasses the structures, systems and standards that create
culture and control clinical activities, and create clinical accountability; clinical management
encompasses processes and procedures to promote efficient, effective and systematic high-
quality, safe care; and clinical practice is the direct delivery of quality health care by
physicians.83 The role of governance is to oversee the management and clinical practice at its
institution and to set the environment and expectations for the protection of human rights. They
can create actionable assessments of quality within their organization to ensure the provision of
quality care in terms of outcomes, process, patient satisfaction and cost. When creating these
assessments, health care governance and executive leadership should consider factors of
physician variability, including organizational factors and physician practice patterns.84 When
systematically performed, these assessments can help to facilitate the provision of high-quality
care.
Underlying determinants of health and associated obligations should be defined and
prioritized based on both technical and underlying values of that patients that could influence
their choices about health care, with consideration for both private morality and public policy
needs based on equity for those who need services the most, based on the seriousness of their
condition.85 The health care organization will need to balance the needs and rights of the
individuals they serve and the populations they serve as a whole. A combination of these two
approaches will be the best way to address disparities based on social determinates of health
120
while protecting and supporting the human right to quality health care. In order to mitigate the
interactive, multiple risks that affect health care quality within vulnerable populations, a
multifaceted approach should be applied through both policy and health care organizational
approaches.86 Through both policy and organizational approaches, the right to quality health care
can be protected and promoted.
Quality health care is a human right. In general, human rights discourse has a growing
awareness of its relevance to health, including considerations for its associated complex ethical
and legal dimensions such as cultural relevance, regional priorities, individual versus
communitarian values, equality of access, resource allocation, and priority setting.87 Though this
discourse is an important first step to integrating health and human rights, explaining health as a
human right lacks an important degree of precision. This discourse should instead be framed in
terms of quality health care as a human right, which both encompasses and more adequately
defines obligations to protect the right to health.
Human rights are based on the dignity of the human being. Since all humans have
intrinsic dignity, all humans deserve the same rights regardless of any social category in which
they identify with, including but not limited to race, ethnicity, socioeconomic status, age, and
gender. Human rights based on the nature of human dignity requires the elimination of health
disparities related to these categories.
Health care quality can be defined through clinical quality, including process and
outcome measures, patient satisfaction, and cost. The emergence of health as a human right
requires that health care organizations eliminate disparities related to these measures through
provision of health care quality to all individuals.
121
3b Organizational Responsibility for Health Care Quality
An organization’s responsibility to protecting the right to quality care is based on its
moral agency. The moral agency of health care delivery organizations bestows responsibilities
upon them to protect the human right to health. This is clarified by the mission and values of
health care organizations. Organizational obligations to health and human rights include the
promotion of quality care and the protection of patient safety.
3bi Organizational Moral Agency
Organizations have ethical obligations through their moral agency.88 The organization’s
moral agency is defined by their mission and values, and is carried out by agents acting upon
their behalf. These agents navigate the ethical environment of the organization using professional
and clinical ethics principles.
The organization’s moral agency is based on its moral identity. Health care organizations
are unique from other types of organizations based on the special goods and services that they
provide. The healthcare organization’s mission and vision should bear this in mind and address
the special stakeholders that healthcare enlists. This can be laid out in the organization’s mission
and values, which serves as the foundation for an organization’s moral identity.
Organizational Identity and Moral Authority
The healthcare organization’s agents embody and act out its moral identity. The moral
identity encompasses the organization’s mission and values, but mission statements are only
words until they are acted upon. Agents of a health care organization can use professional ethics
and clinical ethics in conjunction with the organization’s moral identity to enact the moral
identity of the organization.
122
The moral identity of an organization is needed for practical purposes, although it is only
an analogy or metaphor at its core.89 The organization’s moral identity must be operationalized
to enact meaningful moral agency, and how an organization’s mission statement is
operationalized is key to its impact.90 An organization enacts its mission and vision through
agents who act on their behalf. In health care this can range from executive leadership to front-
line staff. When an agent is confronted with specific ethical dilemmas that are not explicitly
covered by the organization’s mission statement and values, they can rely on professional and
clinical ethics to guide their decision-making, ensuring that they are still facilitating the
organization’s moral identity and agency.
Organizational ethics relies on the actions of agents working on the organization’s behalf,
including individuals, and institutional boards and committees.91 The organization’s moral
agency is enacted by the aggregate of its agent’s actions. The agents have their own moral
identity, but when acting on behalf of the organizational moral agency, they must follow the
organization’s mission and values. The organization can be seen as a community, with the moral
identity of the organization and the moral identity of its agents as entwined. 92 The community
values guide the overall actions of the agents, and the aggregate moral identity of the individuals
within the organizational community influence the moral identity of the organization as a whole.
The agent can experience ethical conflict when their own moral identity and that of the
organization clash. Ethical conflict can be caused by the varying pressures of health care
leadership, including those of environmental factors, financial incentives, board of directors, and
stakeholders.93 When an agent of a healthcare organization faces this type of conflict, they can
rely on professional and clinical ethics to mediate.
123
A professional is a group of individuals with important and exclusive expertise, internal
and external recognition, and autonomy in matters of expert practice, and specific ethical
obligations or codes.94 A physician is an example of a professional. Individuals can have
multiple roles within an organization and their role-defined obligations have the potential to
conflict, such as when a physician’s role as professional clashes with their role expectations as
employee. Professionals are expected to abide by code of ethics and this code should override
other considerations if a conflict arises, even if commitments to the organization conflict with the
professional role. 95 A physician acting upon the moral agency and identity of an organization
may face a conflict of personal versus organizational values, and in this case, they can rely on
professional codes of ethics to override personal and organizational ethical codes.
Professional ethics is especially important because the tensions that can arise between
self-interest and service to patients can undermine a physician’s credibility.96 Because the
physician-patient relationship is of utmost importance, professional ethics helps to protect the
trust between the physician and the patient. The physician has responsibilities to several
individuals and groups, but the patient is their first and foremost priority and they are bound by
professional ethics put the interest of their patient first at all times.
According to the American Medical Association, the physician has ethical
responsibilities to society, other health professionals, and to self but her first and foremost
responsibility is to her patients.97 This means that if a physician’s role as a professional requires
that she acts a certain way, while her employer mandates that she does the opposite, the
physician is morally obligated to follow her professional code of ethics rather than the
organization’s ethical code. The organization should preemptively attempt to avoid such
conflicts and put the patient at the center of their mission and values.
124
Physicians are not the only professionals that practice in health care. Nurses and other
providers are part of professional groups as well. Like physicians, nurses have a professional
ethics codes, although the nurse not traditionally had the level of autonomy or control as
physician, and have typically been employees of physicians or hospitals with a supportive role.98
Nurses face similar issues to physicians when facing conflicting roles within the organization.
Like physicians, they are expected to take their commitment to patient advocacy as their primary
duty, with obligations to the organization as secondary.
It benefits health care organizations to support professional codes because of the crucial
role they play in the physician-patient relationship. As a professional, the physician takes the role
of an advocate, which is important because patients want a physician they can trust to advocate
for their individual interests.99 Maintaining this physician-patient relationship is an important
part of quality care, which should be the highest priority for health care organizations. Health
care organizations should find a way to placate these conflicts within their organizational policy.
Clinical ethics can also help to mediate the role between the organization and its employees.
Clinical ethics addresses issues that arise from the care of patients and considers the
rights of patients as its primary concern, prioritizing patient’s personal autonomy.100 Clinical
ethics is like professional ethics insofar that it puts the patient as the highest priority, but it is
different in that professional ethics looks to the professional code as the highest authority, while
clinical ethics considers patient autonomy to be the highest authority. Clinical ethics typically
focuses attention on particular and individual cases, considering issues such as who should be
involved in decision-making and who is most affected by a decision.101 According to clinical
ethics, the patient choice is considered to be most important in this decision-making process.
125
When there is a conflict between what is best for the overall patient population that the
organization serves versus professional obligations in specific cases, clinical ethics can mediate a
solution, such as in the case of clinical futility.102 For example, if a patient is on a ventilator and
is receiving no benefit, the ventilator use could be considered futile care and there may be a
question of whether its support should be withdrawn. The physician may have her own opinions
about what is best for the patient and organizational leadership may have a conflicting stance on
the best course of action. In this case, clinical ethics principles can be applied to help the patient
(or their surrogate) come to a decision about how to proceed. Clinical ethics can be the mediator
when professional and organizational ethics collide, favoring individual choice and clinical
context.
The United States is a pluralistic society of people different values, where no one specific
group has a special claim to morality.103 Clinical ethics recognizes this fact and places the final
decision on the individual patient’s wishes. Ideally, organizational policy is also formed to
respect the differing values and beliefs of patients that a health care organization serves.
Organizational policy should be formed to prevent ethical problems from occurring,
rather than relying on reactive responses as ethical problems arise.104 Although clinical ethics is a
useful tool to mediate unforeseen issues, an organization should attempt to preemptively prevent
these problems from occurring through policy based on their mission and values. Organizations
should also consider clinical ethics in their policy formation because of the potential of conflicts
with clinical issues. Organizational policies can cause questions of clinical ethics when they have
been made or changed without consideration for clinical impact on individuals.105 Organizations
must consider the influence of their high-level decisions on day-to-day operations.
126
In sum, organizational moral identity, professional ethics, and clinical ethics are all
important for quality of patient care and should work together to achieve the highest standards
for the patients. On all of these levels, there is moral obligation to address inherent inequalities
that can affect the way patients seek and receive care. Because not all patients enter health care
services with the same needs, organizations are not obligated to provide the same level of
services. The structural inequalities that influence and create social determinants of health should
be considered when determining patient care needs.
Organizational Mission, Vision and Values
There are no absolute requirements for a health care organization’s mission statement,
but in general, it should relay its major commitment to patient care and overall health status of
communities, maintaining public confidence, and providing fair and equitable treatment to
employees.106 When developing its mission statement, the organization can follow criteria such
as alignment with external directives, academic commitments to education and research, clinical
impact, community needs, external partnerships, internal interdependency, and resource
implications.107 Whatever content that the healthcare organization decides to include in its
mission statement, the benefit of its primary stakeholders, namely its patients, should be at its
core.
The organization can follow several steps to ensure that the mission statement
effectiveness is maximized: the organization should involve employees from every level of
hierarchy in the organization during its development; the mission statement should be clearly
communicated; measurable operational targets should be established based on the mission
statement; and the mission statement should be periodically revised to ensure that it remains
127
current.108 These steps will help the organization to ensure employee engagement with the
mission statement.
A health care organization’s mission statement can aid in performance improvement by
clearly defining what the organization is trying to achieve.109 Importantly, it should not be
diluted with corporate buzzwords and politically correct terminology, and instead should show
how concepts can be practically applied, and should reflect the organization's true identity.110
The organization’s mission will be the guide for how its moral identity will be enacted by the
organization’s leadership and other agents. The organizational values are also an important piece
of the organization’s moral identity.
The healthcare organization’s values represent what is most important to the organization
and is part of its moral identity. It is important that the organization maintains values that
facilitate trust between the organization and patients. A trust relationship between the patient and
the healthcare organization is essential for the health and financial well-being of patients, the
management of limited resources, and the physician-patient relationship.111 Clearly expressing
organizational values will help to facilitate this trust. Values help the organization to maintain
integrity by establishing commitments, integrating these commitments into daily operations, and
planning for scenarios where organizational values may face conflict.112 Organizational values,
therefore, create the foundation for the relationship between the patient and the healthcare
organization.
It is important for organizations to communicate values that are meaningful. An
organization's established mission and values should not be diluted with corporate buzzwords
and politically correct terminology, and instead should show concepts that can be practically
applied, and should reflect the organization's identity.113 This will help the organization to
128
operationalize its mission and values. How an organization’s mission and values are
operationalized is essential to their effectiveness. Healthcare managers can incorporate an
organization's values into daily operations by recognizing the value system at work, determining
what is within their own sphere of influence, incorporating values of internal stakeholders, and
committing to the established organizational values system.114 This approach will systematically
incorporate the organization’s values into everyday actions and tasks.
In addition, the organization’s values can help to define what it considers to be essential
versus non-essential care. It can also be difficult to parse out genuine patient needs versus
preferences, and when a preference becomes strong enough to become a need.115 This question
involves values and its answer depends on who is making the judgment. If the organization
clearly defines its values, these judgements can be preemptively addressed, at least to some
degree.
The moral identity of an organization explains what an organization is, not merely what it
does, and provides framework for the behavior of individual agents working on behalf of the
organization. The agents of an organization carry out the organization’s moral identity. The
actions of the organization’s agents then reflect upon the moral identity of the organization,
meaning that the organization’s moral identity and the actions of its agents are reciprocal.116 The
organization’s moral identity, as defined by its mission and values, will need to be translated into
actions made on behalf of the organization. The actions of the organization’s agents and the
ethical framework in which they work is imperative to upholding the organization’s moral
identity.
129
3bii Organizational Obligations to Health Care Quality and Patient Safety
Quality, patient safety, and medical error are closely related. Medical error is a subset of
patient safety, which is a subset of quality care. Organizational systems can and should address
structures of inequality can influence quality/patient safety. Although there are regulatory bodies
which attempt to address health care quality and patient safety, an organization’s internal policy
will create more of an impact for patients than these broad programs. These compliance
programs, which focus primarily on regulations, laws, and social norms, are important, but ethics
programs can cover a broader range of issues and have a wider impact on issues directly related
to patient care.117 Organizations face a moral imperative to address quality and patient safety
issues because of the ethical obligations they hold, based on their moral agency.
Quality improvement begins with an organizational focus on its mission, values, goals,
and expectations as demonstrated by organizational leadership and carried out by staff.118 The
organization’s moral identity and agency are key to improving quality and patient safety
outcomes.
Promoting Quality Care
The Institute of Medicine has defined quality outcomes as safe, effective, efficient,
personalized, timely, and equitable.119 Quality is the broad umbrella under which other more
specific measures of care live, such as patient safety and medical error rates. Poor quality can be
caused by the overuse of procedures that do not improve health, underuse of procedures that
could improve health, and misuse of procedures and can be related to issues such as safety,
effectiveness, patient-centeredness, timeliness, efficiency and equity.120 Quality is part of the
health care value equation which is quality over cost. Because health care faces finite resources,
quality must always be measured against cost. Cost in this case can be thought of as purely
130
financial compensation for services and goods, although purely financial costs are not the only
consideration.
Due to the nature of health care, resources are not unlimited. Among many examples of
this include: a limited number of doctors or nurses, a limited number organs for transplant, a
limited amount of blood products, a limited amount of dialysis machines, and a limited number
of hospital beds. These are far from the only examples of limited health care resources and health
care leaders often need to make decisions on how to allocate them in the most effective, efficient,
and fair way. Organizational ethics can guide health care leaders to make these types of
decisions.
The cost of these resources is one of the prevailing issues that health care leaders must
address. Because of this, cost-containment is a prevailing challenge for health care organizations.
There are reoccurring ethical tensions when determining how to balance and prioritize cost and
quality, taking resource constraints and in market competition into consideration.121 Looking for
a new approach to cost-containment, health care regulators, payers, and organizations themselves
have started to look at ways to improve quality of care to reduce unnecessary costs to the system.
In today’s health care environment, organizations must continuously maintain or improve quality
of services while holding down rate of cost growth, focusing on improving processes and/or
outcomes.122 Although the primary goal of a health care organization is first to take care of
patients, this goal cannot be met if it does not remain financially viable. In other words, if a
health care organization does not make a profit, it cannot pursue the mission for the organization.
Weighing the priorities of profit and patient care is at the crux of many ethical dilemmas in
health care.
131
Clearly defining goals will help to ensure that decisions are aligned with the
organization’s values. The organization’s goals are not goals of any one individual working for
the organization, but those of the organization as a whole, reflecting the organization’s moral
agency. There will always be ethical questions that arise from unforeseen circumstances, but
organizational policy should attempt to address the organization’s approach to as many of these
possible quandaries as possible to ensure that decisions are made that are consistent with the
organization’s values. Specifically, quality and patient safety goals should be articulated to
address structural issues, reduce inefficiencies in process and improve patient outcomes.123
Quality can be approached through process improvement or monitoring outcomes
measures. Process improvement and outcomes are closely related, and it is often advisable to
address both process and outcomes. Using process measures is advantageous because they tend
to be specific and actionable, addressing the “how” of health care quality improvement.
Outcomes measures show whether the process measures are working to achieve actual improved
patient care, addressing the “why” of health care quality improvement. For example, an outcome
goal could be to reduce infection rates by 10%. The corresponding process goal would be to
increase hand washing by installing hand sanitizer dispensers in each inpatient room. A
successful QI program always incorporates an emphasis on systems and processes, a focus on
patients, a team approach, and meaningful use of data.124
In addition to improved clinical processes and outcomes, patient satisfaction should also
be considered as part of quality improvement. Patient satisfaction is important because patients
who are more satisfied have better compliance with treatment, communicate relevant information
to their provider, are more likely to return for follow up, and experience better outcomes.125
Some examples of process measures for patient satisfaction would be to ask physicians to make
132
eye contact and sit down when talking to patients in the outpatient clinic. An outcome measure
could be patient satisfaction scores as measured by CAHPS (Consumer Assessment of
Healthcare Providers and Services) surveys.126 As with clinical quality outcomes, process and
outcome metrics are important for the measurement of patient satisfaction.
Once quality process improvement interventions have been implemented, process and
outcomes measures must be continuously monitored and valued. Health care organizations and
their agents can use PDSA (plan, do, study, act) cycle, to run small, frequent tests of change for
quality improvement efforts, continuously learning and modifying programs from both
successful and failed tests.127 Monitoring is an important component of quality improvement
since it shows whether an intervention is working and allows for an approach to be revised as
needed.
Problems with quality can arise from variation in services, underuse of services, overuse
of services, misuse of services, and disparities among populations.128 Addressing all of these
facets of quality is important, but at the core of these issues is the structural inequalities that
individuals and populations face. Addressing these structural inequalities is key to quality
improvement. Organizations have an ethical obligation to address these inequalities based on
their ethical responsibilities as demanded by their moral agency. Ethics programs can synergize
with quality programs to help organizations balance their commitments to both consumers and
payers, informing potential areas of conflict between the goals and expectations of consumers,
payers, and organizational values.129 Having clearly articulated organizational values and
mission can help health care organizations deliver the highest standard quality of care.
133
Included in health care quality improvement is patient safety. Patient safety is a subset of
quality and its process and outcomes goals should also be aligned with the organizational
mission and values.
Protecting Patient Safety
Patient safety is an important component of health care quality. Patient safety describes
health care delivery that does not cause harm to the patient. Medical error is one way that a
patient can be harmed through medical care. Preventable adverse outcomes can arise from
medical error such as medication errors, communication problems, discharge process, retained
sponges, and missed diagnoses, although these errors do not always result in serious
consequences, and adverse outcomes are not always the result of error.130 A patient safety event
is described when the patient is harmed in a way that was not a part of their normal course of
disease or ailment.
This will include the development of a culture of safety. Developing and maintaining a
culture of safety involves facilitating an environment where professionals feel comfortable
addressing safety issues openly, making safety a management priority, creating a learning
organization, valuing employees, thinking in terms of systems, and considering safety as
everyone’s responsibility.131 Additionally, an organization can adopt a patient-centered model. A
patient-centered model considers patients as decision-makers, participants in their own care, and
evaluators of their care.132 Creating systems that encourage patients to be an active part of their
care and recovery greatly improve outcomes.
In sum, improving and maintaining the highest level of quality care and patient safety are
primary goals of health care organizations. Although organizations can create some policies that
address quality and patient safety issues on the surface, they should also look deeper into the
134
structural roots that cause some patients to be higher risk for adverse events and outcomes.
Because structural issues related to social determinants of health are so influential on health
outcomes, they should be a primary concern of any health care quality improvement program.
Further reinforcing this concept is the ethical obligation of health care organizations to address
these issues, based on their moral agency and duty to protect human rights. Human rights forms
the ethical foundation for addressing structural inequalities with the goal of improving and
maintaining patient safety and quality of care.
By definition, human rights must be natural, equal, and universal and must apply to every
human simply because of their status as a human.133 Because organizations have moral agency,
they have an ethical obligation to provide safe, high quality care based on respect for the human
rights of the patients they serve. The right to safe, high quality healthcare is explained by the key
human rights principles of respect for human vulnerability and personal integrity, social
responsibility, and health equity.
Organizational values should emphasize the human rights principle of respect for human
vulnerability and personal integrity. Ethical excellence includes commitment to care for
vulnerable populations, such as those without insurance, those with serious illness, the disabled,
the poor, those who do not speak English, those with mental illness, and the very young.134 In
most cases, these special groups face structural barriers to health care that affect their quality and
patient safety outcomes. This can be due to numerous special problems of the vulnerable, such as
psychological barriers, lack access to appropriate care at the appropriate time, and barriers to
getting treatment such as nature and severity of illness.135
Social conditions can alleviate, exacerbate, or even cause these vulnerabilities.
Vulnerability represents the finitude and fragility of life, and describes contexts in which a
135
person is incapable of protecting his or her own interests due to insufficient power, intelligence,
education, resources, and/or strength.136 Vulnerability is inherent to life and can be used to
describe all humans, making it a key tenant of human rights. All humans may, at some point in
their life, face circumstances which render them vulnerable as individuals, families, groups,
communities or populations, including disease, disability, personal conditions, environmental
conditions, and/or limited resources.137 These circumstances can be experienced in different
ways, for different durations, and at different times in people’s lives. Not all vulnerabilities are
experienced to the same degree or have the same amount of influence on different people’s lives.
Whileallofhumankindisvulnerableaspartofthehumancondition,certain
individuals,groupsandsituationshave“specialvulnerability”determinedbynaturalor
socialdeterminants,leadingtoincreasedriskstofreedom,autonomy,integrityandgeneral
welfarecausedbysocialexclusion.138Structuralinequalitiesfacilitatetheserisks,including
riskforexploitation,neglectandabuse.Specialvulnerabilitycanbepreventedby
addressingitscontextsandcauses,andtherebyfosteringequalrights,humandignity,and
personalintegrity.139Thecontextsandcauseofmanyofthesevulnerabilitiesaresocial
determinantsofhealthcausedbystructuralinequalitiesinherenttothesocialsystems
peoplelivein.
Theprotectionofpersonalintegritystemsfromthepreventionofvulnerability.As
withvulnerability,protectionforpersonalintegrityisalsomoreurgentforsomegroups
andindividualsthanothers.Somepersonsandpopulationsarealsoneedspecialprotection
forpersonalintegrity.140Healthcareorganizationshaveaspecialobligationtocarefor
thoseinneedofthisprotection.Healthcareorganizationshaveanobligationtorespect
thesenegativerightsandfacilitatethesepositiverightsinsupportofthishumanrights
136
principle.Thisisespeciallytruebecausevulnerabilityiscausedorexacerbatedincertain
contextsandsituationsinhealthcare,suchasaccesstohealthcare,provisionofappropriate
healthcare,inequalityofpowerinhealthcare,“doublestandard”research,equivocal
donations,inappropriateresearch,socialvulnerability,vulnerabilityasaresultoflackof
research,stigmatization,unfairpressure,prematureapplicationsoftechnology,genetic
informationandpatientprivacy,unexpectedrisks,andunconsentedcollectionofgenetic
data.141
Becausehealthcareisaspecialtypeofservicethattendstoskewinfavorofthe
sociallyprivileged,healthcareorganizationsshouldtakespecialprecautiontoensurethat
thesevulnerablepopulationsareprotected.Vulnerableindividualsandpopulationsare
worthyofspecialprotectionsbecauseoftheirrelativeorabsoluteincapabilitytoprotect
theirowninterestsbasedoninsufficientpower,intelligence,education,resources,
strength,orothernecessaryattributestoprotectoneselffromabuseorexploitation.142An
individualorpopulationcanbeespeciallyvulnerableformanyreasons,anditisimportant
torecognizethestructureswhichcausethesevulnerabilities,aswellasthewaysinwhich
thevulnerabilitiesmanifestthemselvesinordertoreducetheirnegativeimpacts.
Vulnerabilityisuniversal,andallpeoplearevulnerableatsomepointintheirlife.
Althoughallpeoplefacevulnerability,someexperiencetransientvulnerabilitydueto
temporarycircumstances,whileothersexperiencevulnerabilitythatisinherenttothe
politicalsystems,socioeconomiccircumstances,orotherfactorsthatindividuallyor
collectivelyconstraintheircapacityforfreedom.143
Insum,recognizingsystemsthatcreatethesevulnerabilities,whethertransientor
permanent,isanimportantsteptowardmakingmeaningfulpolicytoprotectthese
137
individualsandpopulations.Healthcareencompassesuniquegoodsandserviceswhichare
inextricablylinkedtovulnerabilityandhumanintegrity.Inhealthcare,vulnerabilityis
especiallyimportantinthephysician‐patientroutinerelationship,researchsetting,and
biotechnologicaladvances.Theseuniqueaspectsofhealthcareintroducepower
relationshipswhichhavethepotentialforabuseandexploitation.Asahumanrights
imperative,thesevulnerabilitiesshouldberecognizedandaddressed–especiallyforthose
withinherentandspecialvulnerabilities.Healthcareorganizationshaveanethical
obligationtoaddressthesespecialvulnerabilitiesinordertoimprovequalityofcareand
patientsafety.Becausethehealthcareorganizationhasmoralagency,theyareexpectedto
actbasedonethicalmeritsofdecisions.Arespectforhumanrightsshouldbeatthecoreof
thisdecision‐making,includinganendorsementofsocialresponsibility.
Therespectforhumanvulnerabilityhelpstoexplainwhyorganizationshavean
obligationtoaddressstructuralinequalities.Becauseofthisprinciple,organizationshavea
moraldutytoprotectandprioritizevulnerablepopulations,namelythosethatexperience
structuralbarrierstoaccessinghealthcare.
Socialresponsibilityexplainsthathumansshouldconsiderandavoidwaysinwhich
theiractionsmaynegativelyaffectsocialconditions.Inrelationtohealth,social
responsibilityemphasizesasharedcommitmentofallstakeholderstopromoteandprotect
socialconditionsthatinfluencehealthsuchasbirthplace,nationality,andage.144Thehealth
careorganizationhastheresponsibilitytotheirstakeholdersbasedontheirmoralagency
andabilitytoenactethicaldecisions.
Socialresponsibilitydemandspositiveactiontoimprovesocialconditionsofthose
whosufferfromsocially‐constructedvulnerability.Freedomcanbetheoreticallyavailable,
138
butitisnoteffectiveunlessitallowspeoplefreedomtoact.Healthcareorganizationsneed
tofacilitateeffective,notjusttheoreticalfreedom.Thiscanincludeengagementinsocial
development.
Socialdevelopmentismulti‐facetedandtakescarefulplanningandconsiderationof
limitedresources.Itinvolvesthedevelopmentofmaterialconditions,formalandcultural
structures,andeducation,andshouldbepartofdeliberategovernmentalpolicy.145The
responsibilityofgovernmentstopromotesocialdevelopmentisofcrucialimportanceto
thehealthofpopulations.Althoughhealthcareorganizationscannotdirectlychangemany
oftheseconditions,recognizingtheimportanceofsocialconditionsandsocialdevelopment
canbethebasisforpreferentialtreatmentforsomegroups.Healthcareservicesarean
importantpartofaperson’ssocialenvironment,andimprovinghealthcanhelpindividuals
achieveinotherareasofsocialdevelopment.Improvinghealthisbothanoutcomeand
prerequisitefordevelopment.146Thehealthofindividualsandpopulationsaffectsabilities
togaineffectivefreedomforeconomicgrowthsuchastheabilitytoholdajoband
educationalopportunities.Inturn,improvedeconomicandsocialconditionsimprove
health.
Althoughsocialresponsibilityisasolidfoundationforsupportingdevelopment,it
canbedifficulttocarryoutinreal‐worldcontexts.Socialresponsibilityrequiresresources
topursuegoalsthatareoftenlimited.Thismeansthatgoalswithinhealthcareandsociety
asawholeneedtobeweighedandprioritizedwithanemphasisonfairnessandbasedin
commonhumanity.147Apersonwhofacesasocialsituationmakingthemmorevulnerable
wouldpossiblywarrantmoreresourcesfromahealthcareorganizationduetogreater
need.Basedonsocialresponsibility,physicianshaveanethicalobligationtospendtime
139
addressingthesocialinequalitiesthatadverselyaffecthealth.148Sincethesesocial
conditionscangreatlyaffect,orevencausecertainhealthoutcomes,theywarrantserious
attentionfrommedicalproviders.Physicians,actingasagentsforthehealthcare
organization,canhelptheorganizationtocarryoutsocialresponsibilityinthisway.
The interdependence of social structures and health should always be considered when
making difficult choices of resource allocation. Structural inequalities should be eliminated or at
least minimized when determining allocation of limited or scarce resources. Ethical analysis can
help to prioritize resources when there are competing needs such as health care, building
infrastructure, and education.149 Health care organizations can do their part by improving the
health care system and supporting human rights. Respect for human vulnerability and social
responsibility combine with the principle of health equity to form the basis of a human rights
approach to quality improvement and patient safety.
Equity involves fair, equitable and appropriate treatment of people, so that equals are
treated equally and unequals are treated unequally.150 In health care, this can mean giving the
most resources to individuals who need the most. In this care, equals mean equal need, so those
who have equal need should be given equal treatment, while those who are better off should
receive less treatment and those who are worse off should receive more treatment.
Healthisauniversal,basichumanneedthattypicallydependsoneconomicand
socialstructuresofsocialhierarchythatdistributeresources.151Inajustsystem,this
resourcedistributioniscreatedthroughpatientneed,notthroughabilitytopayorsocial
status.Therighttohealthcareisbasedonequitybecauseitrepresentsfairlydistributed
accesstosocialprotectionandmitigatesunfairopportunityimbalancecausedbyfactors
outsideofaperson’sowncontrol.152Allhumansshouldhaveanequalrighttohealthcare
140
basedonequityandfairness.Healthdisparitiesarearesultofsystematicinequalities
betweengroupsbasedonsocialdisadvantage,andshouldbeviewedthroughthelensof
socialjustice.153Ahealthcareorganizationhasanobligationtoaddresssocialinequalities
thatarearesultofunjustsocialsystems.Becauseofitsemphasisonthemitigationof
inequality,justiceincludesmakingapreferentialoptionforthepoor.Thisisbecausethe
poorsuffertheworsthealthoutcomes,producedbystructuralmechanismsofexploitation
andpoverty.154Becauseofthehealthoutcomesthatresultfromstructuralinequalitiesthat
createthisinjustice,healthcareorganizationshaveamoralobligationtoaddressthese
issues.
Alternatively,developmentmayseemlikeausefulapproach,butitislimitedbythe
oppressivesystemsthatitattemptstoworkwithin.Unjustsystemswillonlybeget
injustice,evenifthatinjusticeistemporarilymitigated.Theonlywaytoaddressthese
inequalitiesforlong‐termimprovementsisthroughasocialjusticeapproach.Healthcare
organizationshaveadutytoprovideajustsystemofcareforthepatientpopulationit
serves.Thisdutyisbasedonanequalconcernapproachtohealthcare,whichisfoundedin
asocialobligationtojusticeandhumanrightsratherthanoneofcharity.155Whenhealthis
viewedasahumanrightandasocialjusticeapproachistaken,doublestandardsforthe
richandpoorareerased.Ajustice‐basedapproachaddressestherootoftheproblems
ratherthansimplyfunctioningasastrategyformanaginginequality.Thepreferred
approachforaddressingstructuralinequalitiesindevelopingcountriesisthesocialjustice
model.Thismodellooksatinequalitiesashuman‐madeandaddressesthestructuresthat
createandmaintainpovertyandmakepeoplesick.156Theroleofthehealthcare
organizationistoimprovethehealthofthepatientstheyserve,andaddressingthese
141
structuralinequalitieswillbethemosteffectivewaytoachievethisbecausetheyexplain
therootcauseofpooroutcomes.
Povertyisahumanrightsissuethataffectshealthoutcomes.Eradicatingpovertyis
oftenseenasanidealisticandunrealisticgoal.However,basedonprinciplesofhuman
rights,thegoalofcompleteeradicationofpovertyistheonlyonethatisacceptable.Itis
alsoimportanttoavoidself‐fulfillingpropheciesthataredetrimentaltopovertyandhealth.
Humanrightsandhealthadvocatesshouldavoidself‐fulfillingpropheciesrelatedto
poverty,orpredictionsthatinfluenceoutcomes.Predictingthatonewillnotbeableto
influenceasocialenvironmentcanactuallyinfluencetheabilitytoachievethatgoal.
Thegoaloferadicationofpovertyandachievementofthehighestlevelofachievable
healthforallistheonlygoalsupportedbyhumanrights.Similarly,healthcare
organizationsshouldstrivetowardaneradicationofpreventableadversepatientsafety
outcomes.Thepredictionthatanorganizationcaneliminatethesepooroutcomeswillbe
thefirststeptowardachievingthisgoal.Tocarryoutcommitmentstohumanrights,the
structuresofhowhealthcareandthesocialworldarounditmustbeaddressed,including
thedesignandmaintenanceofinstitutionsthatminimizehumanrightsviolations.157
Humanrightsprinciplessupportthedutyofhealthcareorganizationstoaddressstructural
inequalitiesthatcausepoorhealthoutcomes.Moralagencyexplainswhyhealthcare
organizationshaveanethicaldutytoaddresstheseissues.Becausehealthcare
organizationshaveethicalduties,theyareabletohavemoralobligationstoaddressthese
issuesthatresultfromhumanvulnerabilityandarefoundedinsocialresponsibilityand
healthequity.
142
Organizational ethics exists within an external and internal moral climate and reflects
how an organization’s performance aligns with expectations set by social norms as well as its
own goals and values.158 An organization’s moral agency describes how the organization enacts
these goals and values. In the case of health care, these goals and values are focused on
providing safe and quality care. Providing safe, quality care requires that organizations address
structural inequalities faced by the patients they serve. The obligations of organizations to
address these structural issues are based on human rights principles, namely respect for human
vulnerability, social responsibility, and equity.
1 Block, Dale J. M. D. C. P. E. "Revisiting the Triple Aim‐Are We Any Closer to Integrated Health Care?" Physician Executive 40, no. 1 (Jan/Feb 2014): 40‐3.
2 Kim, Linda, Courtney H. Lyder, Donna McNeese‐Smith, Linda Searle Leach, and Jack Needleman. "Defining Attributes of Patient Safety through a Concept Analysis." Journal of Advanced Nursing 71, no. 11 (2015): 2490‐503.
3 Committee on Quality of Health Care in America, Institute of Medicine. To err is human: building a safer health system. Washington, D.C.: National Academy Press. (2000): 26.
4 Committee on Quality Health Care in America, Institute of Medicine. Crossing The Quality Chasm : a New Health System for the 21st Century. Washington, D.C. :National Academy Press (2001): 5‐6
5 The Joint Commission. “Facts about the National Patient Safety Goals.” Retrieved 1/13/2018. https://www.jointcommission.org/facts_about_the_national_patient_safety_goals/
6 The Joint Commission. “2018 National Patient Safety Goals.” Retrieved 1/13/2018. https://www.jointcommission.org/standards_information/npsgs.aspx
7 National Quality Forum. “Serious Reportable Events.” 2008.http://www.qualityforum.org/topics/sres/serious_reportable_events.aspx
8 Centers for Medicare and Medicaid Services. “Outcomes.” Retrieved 1/13/2018. https://www.cms.gov/Medicare/Quality‐Initiatives‐Patient‐Assessment‐Instruments/HospitalQualityInits/OutcomeMeasures.html
9 Institute for Healthcare Improvement. “Patient Safety: Overview.” Retrieved 1/13/2018. http://www.ihi.org/Topics/PatientSafety/Pages/Overview.aspx
10 Agency for Healthcare Research and Quality. “Tools and Resources.” Retrieved 1/13/2018. https://www.ahrq.gov/professionals/quality‐patient‐safety/patient‐safety‐resources/index.html
11 Brandis, Susan, Stephanie Schleimer, and John Rice. "Bricks‐and‐Mortar and Patient Safety Culture." Journal of Health Organization and Management 31, no. 4 (2017): 459‐70.
12 Frader, Joel E., and Charles L. Bosk. "Mistakes, Medical." In Bioethics, edited by Bruce Jennings, 2107‐13. Farmington Hills, MI: Macmillan Reference USA, 2014.
13 Duffy, William. "Improving Patient Safety by Practicing in a Just Culture." Association of Operating Room Nurses. AORN Journal 106, no. 1 (Jul 2017): 66‐68.
14 van Melle, Marije A., Dorien L. M. Zwart, Antoinette A. de Bont, Ineke W. M. Mol, Henk F. van Stel, and Niek J. de Wit. "Improving Transitional Patient Safety: Research Protocol of the Transitional Incident Prevention Programme." Safety in Health 1 (2015).
143
15 Birmingham, Patricia, Martha D. Buffum, Mary A. Blegen, and Audrey Lyndon. "Handoffs and Patient Safety: Grasping the Story and Painting a Full Picture." Western Journal of Nursing Research 37, no. 11 (Nov 2015): 1458.
16 Kachalia, Allen M. D. J. D. "Improving Patient Safety through Transparency." The New England Journal of Medicine 369, no. 18 (2013): 1677‐9.
17 Bal, Gaëlle, Elodie Sellier, Sandra D. Tchouda, and Patrice Francois. "Improving Quality of Care and Patient Safety through Morbidity and Mortality Conferences." Journal for Healthcare Quality 36, no. 1 (Jan/Feb 2014): 29‐36.
18 Barton, Amy J. PhD R. N. Faan, and Mary Beth Flynn PhD R. N. C. N. S. Ccns Faan Makic. "Technology and Patient Safety." Clinical Nurse Specialist 29, no. 3 (May/Jun 2015): 129.
19 Gong, Yang, Song Hsing‐Yi, Xinshuo Wu, and Lei Hua. "Identifying Barriers and Benefits of Patient Safety Event Reporting toward User‐Centered Design." Safety in Health 1 (2015).
20 Vaismoradi, Mojtaba, Sue Jordan, and Mari Kangasniemi. "Patient Participation in Patient Safety and Nursing Input – a Systematic Review." Journal of Clinical Nursing 24, no. 5‐6 (2015): 627‐39.
21 Padgett, Jared, Kenneth Gossett, Roger Mayer, Wen‐Wen Chien, and Freda Turner. "Improving Patient Safety through High Reliability Organizations." The Qualitative Report 22, no. 2 (Feb 2017): 410‐25.
22 Meltzer, David O., and Jeanette W. Chung. "The Population Value of Quality Indicator Reporting: A Framework for Prioritizing Health Care Performance Measures." [In English]. Health Affairs 33, no. 1 (Jan 2014): 132‐9.
23 Stelfox, Henry T., and Sharon E. Straus. "Measuring Quality of Care: Considering Measurement Frameworks and Needs Assessment to Guide Quality Indicator Development." Journal of Clinical Epidemiology 66, no. 12 (Dec 2013): 1320‐7.
24 Suchy, Kirsten. "A Lack of Standardization: The Basis for the Ethical Issues Surrounding Quality and Performance Reports." Journal of Healthcare Management 55, no. 4 (Jul/Aug 2010): 241‐51.
25 McCormack, Richard M. D., Ryan Michels, Nicholas Ramos, Lorraine Hutzler, James D. M. D. Slover, Joseph A. M. D. Bosco, and Arby M. D. Facs Khan. "Thirty‐Day Readmission Rates as a Measure of Quality: Causes of Readmission after Orthopedic Surgeries and Accuracy of Administrative Data/Practitioner Application." Journal of Healthcare Management 58, no. 1 (Jan/Feb 2013): 64‐76; discussion 76‐7.
26 Saver, Barry G., Stephen A. Martin, Ronald N. Adler, Lucy M. Candib, Konstantinos E. Deligiannidis, Jeremy Golding, Daniel J. Mullin, Michele Roberts, and Stefan Topolski. "Care That Matters: Quality Measurement and Health Care." PLoS Medicine 12, no. 11 (Nov 2015).
27 Jiang, H. Joanna PhD, Carlin Lockee, Karma Fache Bass, Irene PhD Fraser, and Eric P. Fache Norwood. "Board Oversight of Quality: Any Differences in Process of Care and Mortality?" Journal of Healthcare Management 54, no. 1 (Jan/Feb 2009): 15‐29; discussion 29‐30.
28 Kaplan, Heather C., Patrick W. Brady, Michele C. Dritz, David K. Hooper, W. Matthew Linam, Craig M. Froehle, and Peter Margolis. "The Influence of Context on Quality Improvement Success in Health Care: A Systematic Review of the Literature." Milbank Quarterly 88, no. 4 (2010): 500‐59.
29 Parast, Layla, Brian Doyle, Cheryl L. Damberg, Kanaka Shetty, David A. Ganz, Neil S. Wenger, and Paul G. Shekelle. "Challenges in Assessing the Process‐Outcome Link in Practice." Journal of General Internal Medicine 30, no. 3 (Mar 2015): 359‐64.
30 Pronovost, Peter J., Thomas Nolan, Scott Zeger, Marlene Miller, and Haya Rubin. "How Can Clinicians Measure Safety and Quality in Acute Care?" The Lancet 363, no. 9414 (2004): 1061‐7.
31 Jones, D. Scott. "Reporting Adverse Medical Events: Quality Reporting Meets Compliance." Journal of Health Care Compliance 14, no. 4 (2012): 53‐76.
32 Millar, Ross. "Framing Quality Improvement Tools and Techniques in Healthcare." [In English]. Journal of Health Organization and Management 27, no. 2 (2013): 209‐24.
33 Wei, Alice C., David R. Urbach, Katharine S. Devitt, Meagan Wiebe, Oliver F. Bathe, Robin S. McLeod, Erin D. Kennedy, and Nancy N. Baxter. "Improving Quality through Process Change: A Scoping Review of Process Improvement Tools in Cancer Surgery." BMC Surgery 14 (2014): 45.
34 Woodard, Tanisha D. "Addressing Variation in Hospital Quality: Is Six Sigma the Answer?" Journal of Healthcare Management 50, no. 4 (Jul/Aug 2005): 226‐36.
35 McAlearney, Ann Scheck ScD, and Peter W. Butler. "Using Leadership Development Programs to Improve Quality and Efficiency in Healthcare." Journal of Healthcare Management 53, no. 5 (Sep/Oct 2008): 319‐31; discussion 31‐2.
36 Pronovost, Peter J., and Jill A. Marsteller. "Creating a Fractal‐Based Quality Management Infrastructure." Journal of Health Organization and Management 28, no. 4 (2014): 576‐86.
144
37 Mt, Joannathan. "Process Versus Outcome Indicators in the Assessment of Quality of Health Care." International Journal for Quality in Health Care 13, no. 6 (2001): 475.
38 Zulman, Donna M. M. D. M. S., Steven M. M. D. M. P. H. Asch, Susana B. M. D. MSc Martins, Eve A. M. D. M. P. H. Kerr, Brian B. M. D. Hoffman, and Mary K. M. D. M. S. Goldstein. "Quality of Care for Patients with Multiple Chronic Conditions: The Role of Comorbidity Interrelatedness." Journal of General Internal Medicine 29, no. 3 (Mar 2014): 529‐37.
39 Gupta, Digant, Mark Rodeghier, and Christopher G. Lis. "Patient Satisfaction with Service Quality as a Predictor of Survival Outcomes in Breast Cancer." Supportive Care in Cancer 22, no. 1 (Jan 2014): 129‐34.
40 Leicht, Karl‐heinz, Wilfried Honekamp, and Herwig Ostermann. "Quality Management in Professional Medical Practices: Are There Effects on Patient Satisfaction?" [In English]. Journal of Public Health 21, no. 5 (Oct 2013): 465‐71.
41 Hamilton, D. F., J. V. Lane, P. Gaston, J. T. Patton, D. MacDonald, A. H. R. W. Simpson, and C. R. Howie. "What Determines Patient Satisfaction with Surgery? A Prospective Cohort Study of 4709 Patients Following Total Joint Replacement." BMJ Open 3, no. 4 (2013).
42 Kvist, Tarja, Ari Voutilainen, Raija Mäntynen, and Katri Vehviläinen‐Julkunen. "The Relationship between Patients' Perceptions of Care Quality and Three Factors: Nursing Staff Job Satisfaction, Organizational Characteristics and Patient Age." BMC Health Services Research 14 (2014): 466.
43 Boardman, Anne, Joanne Wilkinson, and Ruth Board. "Patient Satisfaction with Telephone Follow up after Treatment." Cancer Nursing Practice (2014+) 14, no. 9 (Nov 2015): 27.
44 Russell, Roberta S., Dana M. Johnson, and Sheneeta W. White. "Patient Perceptions of Quality: Analyzing Patient Satisfaction Surveys." International Journal of Operations & Production Management 35, no. 8 (2015): 1158‐81.
45 Légaré, France, and Holly O. Witteman. "Shared Decision Making: Examining Key Elements and Barriers to Adoption into Routine Clinical Practice." [In English]. Health Affairs 32, no. 2 (Feb 2013): 276‐84.
46 Oshima Lee, Emily M. A., and Ezekiel J. M. D. PhD Emanuel. "Shared Decision Making to Improve Care and Reduce Costs." The New England Journal of Medicine 368, no. 1 (2013 Jan 03): 6‐8.
47 Olthuis, Gert, Carlo Leget, and Mieke Grypdonck. "Why Shared Decision Making Is Not Good Enough: Lessons from Patients." Journal of Medical Ethics 40, no. 7 (Jul 2014): 493.
48 Cosgrove, Delos M., Michael Fisher, Patricia Gabow, Gary Gottlieb, George C. Halvorson, Brent C. James, Gary S. Kaplan, et al. "Ten Strategies to Lower Costs, Improve Quality, and Engage Patients: The View from Leading Health System Ceos." Health Affairs 32, no. 2 (Feb 2013): 321‐7.
49 Ewing, Michael. "The Patient‐Centered Medical Home Solution to the Cost‐Quality Conundrum." Journal of Healthcare Management 58, no. 4 (Jul/Aug 2013): 258‐66.
50 Mende, Susan, and Deborah Roseman. "The Aligning Forces for Quality Experience: Lessons on Getting Consumers Involved in Health Care Improvements." Health Affairs 32, no. 6 (Jun 2013): 1092‐100.
51 James, Brent C., and Lucy A. Savitz. "How Intermountain Trimmed Health Care Costs through Robust Quality Improvement Efforts.” Health Affairs 30, no. 6 (Jun 2011): 1185‐91.
52 Lewis, Geraint, Heather Kirkham, Ian Duncan, and Rhema Vaithianathan. "How Health Systems Could Avert 'Triple Fail' Events That Are Harmful, Are Costly, and Result in Poor Patient Satisfaction." Health Affairs 32, no. 4 (Apr 2013): 669‐76.
53 Yegian, Jill Mathews, Pam Dardess, Maribeth Shannon, and Kristin L. Carman. "Engaged Patients Will Need Comparative Physician‐Level Quality Data and Information About Their out‐of‐Pocket Costs." [In English]. Health Affairs 32, no. 2 (Feb 2013): 328‐37.
54 Lynn, Joanne, Mary Ann Baily, Melissa Bottrell, Bruce Jennings, Robert J. Levine, Frank Davidoff, David Casarett, et al. "The Ethics of Using Quality Improvement Methods in Health Care." Review Article. Annals of Internal Medicine 146, no. 9 (2007): 666‐W161.
55 Eleftheriadis, Pavlos. "A Right to Health Care." 268‐85: Wiley‐Blackwell, 2012. 56 Hessler, Kristen, and Allen Buchanan. "Equality, Democracy and the Human Right to Health Care." In Medicine and Social Justice: Essays on the Distribution of Health Care, Second ed. New York: Oxford University Press, 2012. 97‐104.
57 General Assembly resolution 70/1, Transforming Our World: The 2030 Agenda for Sustainable Development, A/RES/70/1 (25 September 2015.)
58 Gruskin, Sofia, Dina Bogecho, and Laura Ferguson. "'Rights‐Based Approaches' to Health Policies and Programs: Articulations, Ambiguities, and Assessment." Journal of Public Health Policy 31, no. 2 (Jul 2010): 129‐45.
145
59 Bustreo, Flavia, and Paul Hunt. "The Right to Health Is Coming of Age: Evidence of Impact and the Importance of Leadership." Journal of Public Health Policy 34, no. 4 (Nov 2013): 574‐9.
60 Fariss, Christopher J. "Respect for Human Rights Has Improved over Time: Modeling the Changing Standard of Accountability." The American Political Science Review 108, no. 2 (May 2014): 297‐318.
61 Dubach, Barbara, and Maria Teresa Machado. "The Importance of Stakeholder Engagement in the Corporate Responsibility to Respect Human Rights." International Review of the Red Cross 94, no. 887 (Sep 2012): 1047‐68.
62 Shemberg, Andrea. "New Global Standards for Business and Human Rights." Business Law International 13, no. 1 (Jan 2012): 27‐33,1.
63 Gruskin, Sofia. Perspectives on Health and Human Rights. New York: Routledge, 2005. 3‐49 64 Smith‐Estelle, Allison, Laura Ferguson, and Sofia Gruskin. "Applying Human Rights‐Based Approaches to Public Health: Lessons Learned from Maternal, Newborn and Child Health Programs." Etude de la Population Africaine 29, no. 1 (2015): 1713‐28.
65 UN Human Rights Council, Protect, respect and remedy : a framework for business and human rights : report of the Special Representative of the Secretary‐General on the Issue of Human Rights and Transnational Corporations and Other Business Enterprises, John Ruggie, 7 April 2008.
66 Office of the High Commissioner, United Nations. Guiding Principles on Business and Human Rights: Implementing the United Nations "Protect, Respect and Remedy" Framework. New York and Geneva: United Nations, 2011.
67 Nix, Kathryn A., and John S. O'Shea. "Improving Healthcare Quality in the United States: A New Approach." Southern Medical Journal 108, no. 6 (2015): 359‐63.
68 Meier, B. M., and W. Onzivu. "The Evolution of Human Rights in World Health Organization Policy and the Future of Human Rights through Global Health Governance." Public Health 128, no. 2 (Feb 2014): 179‐87.
69 Hamel, Mary Beth, Jennifer Prah Ruger, Theodore W. Ruger, and George J. Annas. "The Elusive Right to Health Care under U.S. Law." The New England Journal of Medicine 372, no. 26 (2015): 2558‐63.
70 Menzel, Paul T. "Setting Priorities for a Basic Minimum of Accessible Health Care." In Medicine and Social Justice: Essays on the Distribution of Health Care, Second ed. New York: Oxford University Press, 2012. 131‐141.
71 Shi, Leiyu DrPH M. B. A. M. P. A., Lydie A. PhD M. P. H. Lebrun‐Harris, Charles A. M. H. A. Daly, Ravi PhD Sharma, Alek PhD M. P. H. Sripipatana, A. Seiji M. D. M. P. H. Hayashi, and Quyen M. D. M. P. H. Ngo‐Metzger. "Reducing Disparities in Access to Primary Care and Patient Satisfaction with Care: The Role of Health Centers." Journal of Health Care for the Poor and Underserved 24, no. 1 (Feb 2013): 56‐66.
72 UN Office of the High Commissioner for Human Rights (OHCHR), Fact Sheet No. 31, The Right to Health, June 2008, No. 31
73 Murphy, Matthew, and Jordi Vives. "Perceptions of Justice and the Human Rights Protect, Respect, and Remedy Framework." Journal of Business Ethics 116, no. 4 (Sep 2013): 781‐97.
74 Fenton, Elizabeth, and John D. Arras. "Bioethics and Human Rights: Curb Your Enthusiasm." [In English]. Cambridge Quarterly of Healthcare Ethics 19, no. 1 (Jan 2010): 127‐33.
75 Hall, Robert T. An Introduction to Healthcare Organizational Ethics. Oxford: Oxford University Press, 2000. 41‐56. 76 Dessart, Francis. "Freedom and the Fundamental Right of the Human Being." International Journal of Communication Research 4, no. 3 (Jul‐Sep 2014): 289‐95.
77 Hernandez, Jill Graper. "Human Value, Dignity, and the Presence of Others." [In English]. HEC Forum 27, no. 3 (Sep 2015): 249‐63.
78 Fasterling, Björn, and Geert Demuijnck. "Human Rights in the Void? Due Diligence in the Un Guiding Principles on Business and Human Rights." Journal of Business Ethics 116, no. 4 (Sep 2013): 799‐814.
79 de Felice, Damiano. "Business and Human Rights Indicators to Measure the Corporate Responsibility to Respect: Challenges and Opportunities." Human Rights Quarterly 37, no. 2 (May 2015 2015): 511‐555.
80 Citrin, Levi J. D., and Richard M. D. Blath. "Critical Management Tools for Getting Costs under Control." Physician Executive 39, no. 6 (Nov/Dec 2013): 28‐31.
81 Dutta, Mohan J. "Reducing Health Disparities: Communication Interventions." In Reducing Health Disparities: Communication Interventions, edited by Gary L. Kreps, 1‐14. Vol. 6. New York: Peter Lang Publishing, 2013.
82 Brandão, Cristina, Guilhermina Rego, Ivone Duarte, and Rui Nunes. "Social Responsibility: A New Paradigm of Hospital Governance?". Health Care Analysis 21, no. 4 (2013): 390.
83 Brennan, Niamh M., and Maureen A. Flynn. "Differentiating Clinical Governance, Clinical Management and Clinical Practice." Clinical Governance 18, no. 2 (2013): 114‐31.
146
84 Sutter, Robert R. N. M. B. A. M. H. A., Brian M. P. H. Waterman, and Michael M. D. Facog Udwin. "An Analytical Approach to Improving Physician Performance." Physician Executive 39, no. 3 (May/Jun 2013): 26‐36.
85 Yamin, Alicia Ely, and Angela Duger. "Adjudicating Health‐Related Rights: Proposed Considerations for the United Nations Committee on Economic, Social and Cultural Rights, and Other Supra‐National Tribunals." Chicago Journal of International Law 17, no. 1 (Summer 2016): 80‐120.
86 Shi, Leiyu, and Gregory D. Stevens. Vulnerable Populations in the United States. Second ed. San Francisco, CA: Jossey‐Bass, 2010. 152‐163
87 Bennett, Belinda. "Introduction: Health and Human Rights." International Journal of Law in Context 7, no. 3 (Sep 2011): 271‐72.
88 Winkler, Eva C and Russell L. Gruen. Organizational Ethics. The Sage Handbook of Health Care Ethics: Core and Emerging Issues. Sage Publications Ltd. London: SAGE Publications Ltd, 2011. 75‐76.
89 Ashman, I, and Diana W. "For or against Corporate Identity? Personification and the Problem of Moral Agency." Journal of Business Ethics 76, no. 1 (Nov 2007n): 83‐95.
90 Desmidt, S et al. "Looking for the Value of Mission Statements: A Meta‐Analysis of 20 Years of Research." [In English]. Management Decision 49, no. 3 (2011): 468‐83.
91 Hall, Robert T. "Organizational Ethics in Healthcare." In Encyclopedia of Bioethics, edited by Stephen G. Post, 1940‐44. New York: Macmillan Reference USA, 2004.
92 Buchholz, RA, and Rosenthal, SB. "Integrating Ethics All the Way Through: The Issue of Moral Agency Reconsidered." Journal of Business Ethics 66, no. 2/3 (2006): 233‐39.
93 Jurkiewicz, Carole L., and Carolyn R. Thompson. "Conflict of Interest: Organizational Vs. Executive Ethics in Health Care." Journal of Health and Human Services Administration 23, no. 1 (2000): 100‐23.
94 Ozar, David T. "Profession and Professional Ethics." In Encyclopedia of Bioethics, edited by Stephen G. Post, 2158‐69. New York: Macmillan Reference USA, 2004.
95 Davis, Michael. Professional Codes. The Sage Handbook of Health Care Ethics: Core and Emerging Issues. Sage Publications Ltd. London: SAGE Publications Ltd., 2011. http://dx.doi.org/10.4135/9781446200971.
96 Rodwin, Marc A. Conflicts of Interest and the Future of Medicine. Oxford University Press. 2011. 8‐11 97 American Medical Association. "Principles of Medical Ethics." AMA Code of Medical Ethics. June 1, 2001. Accessed May 19, 2015. http://www.ama‐assn.org/ama/pub/physician‐resources/medical‐ethics/code‐medical‐ethics/principles‐medical‐ethics.page.
98 Spencer, EM et al. Organization Ethics in Health Care. Oxford University Press, 2000. 82‐83 99 Purtilo, Ruth B. "Professional–Patient Relationship: Iii. Ethical Issues." In Encyclopedia of Bioethics, edited by Stephen G. Post, 2150‐58. New York: Macmillan Reference USA, 2004.
100 Post, SG. "Clinical Ethics." Encyclopedia of Bioethics. New York: Macmillan Reference USA, 2004. 101 Eva C. Winkler, Russell L. Gruen. Organizational Ethics. The Sage Handbook of Health Care Ethics: Core and Emerging Issues. Sage Publications Ltd. London: SAGE Publications Ltd. (2011): 73‐74.
102 Gallagher, Colleen M., and Ryan F. Holmes. "Handling Cases of 'Medical Futility'." HEC Forum 24, no. 2 (Jun 2012): 91‐8.
103 Lynch, HF. Conflicts of Conscience in Health Care. An Institutional Compromise. MIT Press, 2008. 133‐135 104 McCullough, Laurence B. "Practicing Preventive Ethics‐‐the Keys to Avoiding Ethical Conflicts in Health Care." Physician Executive 31, no. 2 (2005): 18‐21.
105 Spencer, EM et al. Organization Ethics in Health Care. Oxford University Press, 2000. 46‐48 106 Hall, RT. An Introduction to Healthcare Organizational Ethics. Oxford University Press, 2000. 23‐25 107 Gibson, Jennifer L, Douglas K Martin, and Peter A Singer. "Setting Priorities in Health Care Organizations: Criteria, Processes, and Parameters of Success." BMC Health Services Research 4, no. 1, 2004. 4‐25.
108 Williams Jr, Ralph I et al. "Reinvigorating the Mission Statement through Top Management Commitment." Management Decision 52, no. 3 (2014): 446.
109 Forehand, Aimee. "Mission and Organizational Performance in the Healthcare Industry." Journal of Healthcare Management 45, no. 4 (Jul/Aug 2000): 267‐77.
110 Cady, Steven H., Jane V. Wheeler, Jeff DeWolf, and Michelle Brodke. "Mission, Vision, and Values: What Do They Say?" [In English]. Organization Development Journal 29, no. 1 (Spring 2011): 63‐78.
111 Goold, Susan Dorr. "Trust and the Ethics of Health Care Institutions." The Hastings Center Report 31, no. 6 (2001): 26‐33.
147
112 Iltis, Ana Smith,. "Values Based Decision Making: Organizational Mission and Integrity." HEC Forum 17, no. 1 (Mar 2005): 6‐17.
113 Cady, Steven H., Jane V. Wheeler, Jeff DeWolf, and Michelle Brodke. "Mission, Vision, and Values: What Do They Say?" Organization Development Journal 29, no. 1 (Spring 2011): 63‐78.
114 Graber, David R., and Anne Osborne Kilpatrick. "Establishing Values‐Based Leadership and Value Systems in Healthcare Organizations." Journal of Health and Human Services Administration 31, no. 2 (Fall 2008): 179‐97.
115 Lynch, HF. Conflicts of Conscience in Health Care. An Institutional Compromise. MIT Press, 2008. 129‐132 116 Weaver, GR. "Virtue in Organizations: Moral Identity as a Foundation for Moral Agency." Organization Studies 27, no. 3 (2006): 341‐68.
117 Spencer, EM et al. Organization Ethics in Health Care. Oxford University Press, 2000. 3‐4 118 US Department of Health and Human Services. Quality Improvement. April 2011. 7‐9 http://www.hrsa.gov/quality/toolbox/508pdfs/qualityimprovement.pdf
119 Committee on Quality of Health Care in America, Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, CD: National Academy Press, 2001. http://www.nap.edu/html/quality_chasm/reportbrief.pdf
120 Shore, David A., ed. The Trust Crisis in Healthcare: Causes, Consequences, and Cures. New York: Oxford University Press, 2006. Oxford Scholarship Online, 2009. 49‐55
121 Pearson, SD et al. No Margin, No Mission. Health Care Organizations and the Quest for Ethical Excellence. Oxford University Press, 2003.1‐3
122 Spencer, EM et al. Organization Ethics in Health Care. Oxford University Press, 2000. 179‐180 123 Shojania KG, Showstack J, Wachter RM. “Assessing Hospital Quality: A Review for Clinicians.” Eff Clin Pract 2001. 4:82‐90.
124 US Department of Health and Human Services. Quality Improvement. April 2011. 1‐4 http://www.hrsa.gov/quality/toolbox/508pdfs/qualityimprovement.pdf
125 Naidu, Aditi. "Factors Affecting Patient Satisfaction and Healthcare Quality." International Journal of Health Care Quality Assurance 22, no. 4 (2009): 366‐81.
126 Agency for Healthcare Research and Quality. “The CAHPS Program.” CAHPS Home. (Retrieved May 19, 2015) https://www.cahps.ahrq.gov/about‐cahps/cahps‐program/index.html
127 Walley, P., & Gowland, B. "Completing the Circle: From Pd to Pdsa." International Journal of Health Care Quality Assurance 17(6) (2004): 349‐58.
128 Agency for Healthcare Research and Quality. Improving Healthcare Quality. September 2002. http://archive.ahrq.gov/research/findings/factsheets/errors‐safety/improving‐quality/improving‐health‐care‐quality.pdf
129 Spencer, EM et al. Organization Ethics in Health Care. Oxford University Press, 2000. 184‐185 130 Robert Wachter. Understanding Patient Safety. McGraw HIll, 2007. 3‐12 131 Shore, David A., ed. The Trust Crisis in Healthcare: Causes, Consequences, and Cures. New York: Oxford University Press, 2006. Oxford Scholarship Online, 2009. 59‐64
132 Shore, David A., ed. The Trust Crisis in Healthcare: Causes, Consequences, and Cures. New York: Oxford University Press, 2006. Oxford Scholarship Online, 2009. 70‐72
133 Hunt, L. Inventing Human Rights. A History. New York/London: W.W. Norton & Company, 2008. 19‐22 134 Pearson, SD et al. No Margin, No Mission. Health Care Organizations and the Quest for Ethical Excellence. Oxford University Press, 2003. 97‐100
135 Pearson, SD et al. No Margin, No Mission. Health Care Organizations and the Quest for Ethical Excellence. Oxford University Press, 2003. 113‐115
136 Jan Helge Solbakk: Vulnerability: A futile or useful principle in Healthcare Ethics? In: Ruth Chadwick, Henk ten Have and Eric M. Meslin (Eds): The SAGE Handbook of Health Care Ethics: Core and Emerging Issues. SAGE Publishers, Los Angeles, 2001, 230‐233
137 Jan Helge Solbakk: Vulnerability: A futile or useful principle in Healthcare Ethics? In: Ruth Chadwick, Henk ten Have and Eric M. Meslin (Eds): The SAGE Handbook of Health Care Ethics: Core and Emerging Issues. SAGE Publishers, Los Angeles, 2001, p 228‐229
138 International Bioethics Committee: Report on the Principle of Respect for Human Vulnerability and Human Integrity. United Nations Educational, Scientific and Cultural Organization. France 2013. 1‐3
148
139 International Bioethics Committee: Report on the Principle of Respect for Human Vulnerability and Human Integrity. United Nations Educational, Scientific and Cultural Organization. France 2013.13‐14
140 Jan Helge Solbakk: Vulnerability: A futile or useful principle in Healthcare Ethics? In: Ruth Chadwick, Henk ten Have and Eric M. Meslin (Eds): The SAGE Handbook of Health Care Ethics: Core and Emerging Issues. SAGE Publishers, Los Angeles, 2001, 234‐236
141 International Bioethics Committee: Report on the Principle of Respect for Human Vulnerability and Human Integrity. United Nations Educational, Scientific and Cultural Organization. France 2013. 4‐12
142 McLean 105‐106 143 Martin, Angela K., Nicolas Tavaglione, and Samia Hurst. "Resolving the Conflict: Clarifying 'Vulnerability' in Health Care Ethics." Kennedy Institute of Ethics Journal 24, no. 1 (Mar 2014): 51‐72.
144 Semplici, Stefano. "The Importance of ‘Social Responsibility’ in the Promotion of Health." Medicine, Health Care and Philosophy 14, no. 4 (2011): 355‐63.
145 International Bioethics Committee: Report on Social Responsibility and Health. United Nations Educational, Scientific and Cultural Organization. France 2010. 16‐21
146 International Bioethics Committee: Report on Social Responsibility and Health. United Nations Educational, Scientific and Cultural Organization. France 2010. 26‐33
147 International Bioethics Committee: Report on Social Responsibility and Health. United Nations Educational, Scientific and Cultural Organization. France 2010. 34‐45
148 Stone, John R. "Saving and Ignoring Lives: Physicians' Obligations to Address Root Social Influences on Health‐‐Moral Justifications and Educational Implications." Cambridge Quarterly of Healthcare Ethics 19, no. 4 (Oct 2010): 497‐509.
149 Rothman DJ and Rothman Sheila M. Trust is not enough. Bringing human rights to medicine. New York Review of Books, New York, 2006. 152‐153
150 Beachamp, L and Childress JF. Principles of Biomedical Ethics, 7th Edition. Oxford University Press, 2013. 249‐251.
151 Marmot, Michael. "Achieving Health Equity: From Root Causes to Fair Outcomes." [In English]. The Lancet 370, no. 9593 (Sep 2007):1153‐63.
152 Beachamp, L and Childress JF. Principles of Biomedical Ethics, 7th Edition. Oxford University Press, 2013. 271‐274
153 Braveman, PA. et al. "Health Disparities and Health Equity: The Issue Is Justice." [In English]. American Journal of Public Health 101, no. S1 (2011): S149‐55.
154 Wagstaff, Adam. "Poverty and Health Sector Inequalities." World Health Organization. Bulletin of the World Health Organization 80, no. 2 (2002): 97‐105.
155 Kelleher, J. Paul. "Beneficence, Justice, and Health Care." Kennedy Institute of Ethics Journal 24, no. 1 (Mar 2014 2014‐08‐12 2014): 27‐49.
156 Farmer, P. Pathologies of Power. Health, Human Rights, and the New War on the Poor. Los Angeles: University of California Press, 2005. 157‐159
157 Fenton, JD and Fenton, EM. “Bioethics and Human Rights: Access to Health‐Related Goods.” Hastings Center Report, Volume 39, Number 5, September‐October, 2009, 27‐38.
158 Spencer, EM et al. Organization Ethics in Health Care. Oxford University Press, 2000. 5‐7
149
Chapter 4: Social Determinants of Health
4a Social Determinants of Health & Cultural Competency
Social determinants of health – including race, ethnicity, culture, socioeconomic status
and barriers to access – have a serious impact on health outcomes in the United States.
Determining how to address these issues is a challenge exacerbated by the multicultural nature of
the US population. It can be difficult to navigate through the different cultures, beliefs, and
backgrounds that a diverse population offers.
Due to the pluralism created by a multicultural society, bioethicists need to seek a
common ground between methodological differences through moral discourse based on
foundational theories, principles, and casuistry.1 One way to explain this moral discourse is in
terms of religious ethics and secular ethics. Religious medical ethics is based on claims that a
religion has a way of knowing divine truth or divine will and typically presents in two forms –
with truths revealed or naturally knowable by reason.2 Secular ethics, on the other hand, relies on
approaches of reason or approaches of experience or moral sense. 3 Given the diversity of
religious and secular perspectives in a multicultural society (such as the United States), major
challenges are presented by both religious and secular medical ethics foundations. Instead of
choosing an ethical theory that favors a certain group or theory, a normative ethic can be
formulated to address challenges associated with social determinates of health through
foundations and applications of human rights.
Human rights should be the basis of a normative ethical approach to health care ethics in
a multicultural society because it is founded in respect for human vulnerability and justice. This
means that it is an approach that considers the different needs of individuals while uniformly
granting the same rights to all. Human rights can help to address social determinants of health,
150
considering the nature of human vulnerability and applying the principle of justice to reduce
health disparities. Through applying human rights principles, organizations can implement
cultural competency programs and policy in order to reduce disparities caused by social
determinants of health and ultimately improve quality of care. In other words, the human rights
principles of respect for human vulnerability and justice can be applied through organizational
policy focused on cultural competency, and ultimately address social determinants of health to
improve quality of care.
4aii Ethical Challenges to Organizational Policy Stemming from Social Determinants of Health
A diverse population with varied races, ethnic backgrounds and belief systems can lead to
major challenges in bioethics and present the need to address ethical pluralism in the context of
diverse philosophical, spiritual, and religious beliefs.4 These challenges are especially pertinent
in relation to social determinants of health. When individuals in a society have varying
backgrounds and belong to diverse social, religious and cultural groups, it can be difficult to
create a health care system that applies to all individuals fairly.
This is further complicated by (real or perceived) weaknesses of traditional bioethics
itself, which often faces criticism that it is based on western principles, methods, and philosophy
and that it is lacking in its attempt to address the role of social and cultural values – specifically
those that define health, illness, pain, and death.5 If those analyzing ethical challenges to health
care hold a specific world view, they may not be able to seriously consider other legitimate
perspectives from other cultural groups. This is one barrier to ethical analysis of multicultural
health promotion, but these barriers include many factors related to: Demographics – such as
age, ethnicity, religion, and education level; Culture – including worldview/perceptions in life,
time orientation, and primary language; and Health care system barriers – including access to
151
care, financial resources, and poor doctor-patient communication.6 The various barriers that face
a multicultural society when addressing health disparities related to social determinants of health
must be addressed in order to improve health outcomes based on an ethical foundation of human
rights.
Social determinants of health include key components of race, ethnicity, culture,
socioeconomic status, and access to health care.
Diversity
Race, ethnicity and culture are important factors that have great influence on
socioeconomic status of groups and individuals. These factors can seriously impact the quality
and amount of health care that an individual receives.
Culture, ethnicity and race play important roles in patients’ ability to understand and
interpret health care information and instruction. Culture describes (learned) patterns of social
conduct – including everyday social interaction, local shared local knowledge, language
patterns, family structures, values, symbols, interpretive categories, and ethnic traditions – and
can strongly influence an individual’s understanding of illness, death, dying, decision-making,
truth-telling, decision-making, “reasonableness,” autonomy, meaning symptoms and illness,
understanding of appropriate social roles of family, and attitudes toward advance care planning.7
This patient background has the capacity to influence their ability to make many life-altering
positions and can thereby contribute to health disparities among groups who have a greater
ability to access and apply health care information versus those who do not.
Even when a person understands the health information they are receiving and can access
the health care they need, cultural barriers can persist based on community expectations and also
expectations of oneself. Cultural experiences and religious beliefs can be so intricately tied to a
152
person’s personal identity that a person may not feel free to act autonomously when there are
foreseeably adverse consequences of choosing to act any other way than community desires, or
acting in a way that will result in loss or radically altered sense of self. 8 If a person feels that
they will lose their identity by acting against the norms of their culture, they may be unlikely to
act against them. This can be further exacerbated by providers who do not understand the reasons
why a patient acts a certain way because they are unfamiliar with their culture.
Although culture, ethnicity and race should be taken into consideration when making
health decisions, there are some potential pitfalls and weaknesses in focusing on culture and
ethnicity. It can promote cultural stereotypes, “essentialize” values, overlook variations, obscure
importance of other issues such as socioeconomic status, and limit insight into what should be
accommodated or tolerated.9 Health care leaders and providers should be wary of
overgeneralizing based on these factors to avoid discrimination and further exacerbate the health
disparities caused by these factors.
Stereotypes that apply biases or even epidemiological data to the individual without
considering their individual characteristics can be extremely harmful – especially for those in
marginalized groups. Avoiding stereotypes and overgeneralizations based on race, culture and
ethnicity is especially important because of the serious disparities in health care and health
outcomes faced by minorities in the United States. Importantly, there has been an unequivocal
amount of evidence that minority groups often do not get the same level of health care treatment
in the United States. For example, African Americans have been shown to have lower survival
rates for lung cancer than Caucasian Americans, which is largely explained by their lower rate of
surgical treatment – the optimal treatment for early –stage, non-small cell lung cancer.10 In this
153
case, the health outcomes of African Americans is directly related to the type and amount of
treatment they tend to be offered.
Other research shows that Asian Americans and Hispanic Americans have been shown to
experience lower patient satisfaction, receive less preventative care services, engage in less
physician counselling, and are less likely to receive care to manage chronic conditions than
African Americans or whites.11 In addition, non-white patients have been shown to be less likely
than white patients to receive adequate pain treatment.12 This shows that different minority
groups have varying experiences with the health care system – making analysis of effect of race,
culture and ethnicity complex, multivariate and multi-layered. Because of the complexity of
analysis, it is also a challenge to determine why these outcomes vary between minority and
majority groups.
The varying health outcomes of different minority groups in the United States could be
attributed to differing views of these groups and their physicians. When the cultural background
of a patient and a physician differs, their opinions on issues such as life-sustaining technology
can differ since they often have faced different life experiences related to ethnicity,
socioeconomic status, gender and access to care.13 When the majority group holds the majority
of health care provider roles, minorities may have fewer opportunities to relate to their caregiver.
There are many ways that health care providers can address these disparities in race,
culture and ethnicity. According to the American College of Physicians, racial and ethnic
disparities can be reduced through changes to the health care system including: providing all
legal residents with health insurance, believing that all patients deserve high quality health care,
acknowledging cultural and linguistic needs of patients, recognizing pre-conceived perceptions,
delivering accessible patient-centered care, promoting a diverse workforce, addressing social
154
determinants of health, reducing the effect of environmental stressors, and supporting more
research and data collection related to racial and ethnic disparities.14 These are just some of the
strategies that health care organizational leaders and health care providers can use to reduce or
begin to eliminate the disparities in health based on culture, race and ethnicity.
Culture, race and ethnicity are significant challenges to ethical organizational
policy formation within a multicultural society. These, along with other factors contribute to
disparities in health outcomes. Closely related to culture, race and ethnicity lie health care
disparities created or perpetuated by socioeconomic status.
Socioeconomic status is an important indicator of health status and outcomes. The way
that socioeconomic status affects health can be explained on many levels, and has significant
supporting evidence to support the ways in which its influence functions.
Socioeconomic status influences many health risks that have serious implications for
adverse health outcomes in poor individuals and groups. Low level of wealth or socioeconomic
position moderately contributes to health behavioral risks of obesity, smoking and physical
inactivity for adults 50 and over, meaning that promoting healthier lifestyles among these
populations could help to close the gap in health inequalities.15 This is an important part of the
picture and can be addressed in part by increasing access to health to health care and health
information, and by supporting programs to improve lifestyle influences of poor health
outcomes. This is one part of the picture of health and socioeconomic status, which affects health
on many levels.
Socioeconomic status not only affects physical health, but importantly also has a serious
effect on mental health. Socioeconomic status and demographic variables have been directly and
independently shown impact changes in mental health, which can be attributed (at least partially)
155
to increased exposure to stressors experienced by socioeconomically disadvantaged groups.16 A
disadvantaged socioeconomic position has the potential to impose a large amount of undue stress
on an individual and thus impact mental health status. Impaired mental health status then has the
potential to negatively affect socioeconomic status by causing disability, creating a vicious, self-
perpetuating cycle. It is therefore important to address socioeconomic status and its relation to
mental health, with an emphasis on early intervention.
Socioeconomic inequalities can also lead to increased risk of anxiety and depression,
which is a gap that widens over the life course and could be addressed by prevention strategies in
early life.17 An approach to improving mental health for the socioeconomically disadvantaged,
especially at an early age, can improve functional capability and reduce the risk of further
intensifying the negative effects of poverty.
Focusing on groups in low socioeconomic states can shed light on inequalities inherent to
the health care system. For example, socially advantaged better positioned to benefit from
biomedical advances that can lead to social inequalities and it is important to note the health
provider’s influence on decisions, strength and uniformity of recommendations, uniform
protocols, dissemination of health information and design new treatment protocols that prevent
or alleviate health disparities.18 Biomedical science often focuses on social advantaged groups so
redirecting research and health improvement initiatives can begin to address some of the
disparities between availability of interventions to improve health. In addition, conditions and
diseases that particularly affect those in socioeconomically disadvantaged groups can be further
emphasized in research and provision of care to reduce the disparities caused by emphasis on the
wealthiest few.
156
The disparities between wealthy and poor patients have many contributing factors.
Physician perception and treatment of socially disadvantaged groups can significantly impact
health outcomes. The way physicians form perceptions about their patients has been shown to
have heavy influence from the patient’s socioeconomic class, with physicians associating
socioeconomic class with perception of a patient’s personality, ability, behavioral tendencies,
and role demands.19 This means that a physician may treat a patient differently based on
perceptions of how they will behave – even if these perceptions are not based in any evidence of
the individual patient’s characteristics. This can affect outcomes for patients who are treated
unfairly based on provider bias.
Absolute socioeconomic position has a great influence on health outcomes, but so does
relative socioeconomic position in terms of income inequality. Income inequality has also been
shown to negatively impact infant mortality, low birthweight, and mortality in people aged 1-14
years, although these outcomes are not universally applicable and are most clearly correlated
within the United States where income inequality is overwhelmingly associated with unequal
distribution of health.20 The correlation between income inequality and negative health outcomes
is another factor related to socioeconomic status that affects outcomes for all individuals – not
just those who are economically disadvantaged. Mortality has been shown to be reduced with
more equal distribution of income, with benefits weighing toward the poor and smaller benefits
shown for the wealthy, which may be explained by the socially corrosive nature of income
inequality.21 Income inequality, in other words, is not good for any member of society – although
the poor are impacted the most severely.
Poor health exacerbates and perpetuates poverty through social marginalization,
disadvantage, vulnerability and discrimination, but can be addressed operationally by
157
institutionalizing systematic and routine application of human rights perspectives, strengthening
and extend public health functions, implementing equitable health care financing, ensuring
adequate response to major causes of preventable ill-health among the poor and disadvantaged,
and monitoring implications of development policies.22 Health care organizations, leaders and
providers can foster improved health outcomes by addressing social determinants of health and
improving economic equity for all individuals within the multicultural society.
Further, socioeconomic status is closely related to the ability of an individual to
meaningfully access health care. In addition to race, culture, ethnicity, and socioeconomic status,
barriers to healthcare access are a significant social determinant of health.
Barriers to Access
Access to health care is essential to good health outcomes. Most importantly, health care
access is related to core American values of equality of opportunity, justice, and compassion
which lead to the following ethical obligations: Every member of society must have adequate
health care benefits; The contents and limits of health care benefits must be established through
an ethical process; The health care system must be sustainable; and Stakeholders must be
accountable for clear responsibilities.23 Because health care access is intrinsically tied to core
American beliefs about opportunity, justice and compassion, it should be emphasized when
looking at ways to reduce social disparities of health care.
Health care providers and organizations should work to reduce disparities experienced by
racial and ethnic minorities – such as lower quality and quantity of preventative, diagnostic, and
therapeutic services –by addressing and monitoring the contributing financial and structural
barriers.24 These financial and structural barriers effectively equal barriers to access when they
prevent a patient from obtaining meaningful care. Racial and ethnic minorities disproportionately
158
experience inadequate access, which goes against the core American belief of equality of
opportunity. When a person does not have access to care that can help them achieve optimal
level of health, their opportunities to effectively participate in society are significantly
diminished.
Financial barriers are one of the most significant barriers to access faced by those in
disadvantaged groups. Financial barriers can include insurance status or ability to pay for health
care services. This is especially important because the uninsured do significantly worse in both
quality and satisfaction outcomes than the insured.25 When a patient is not able to pay for health
care or health related goods, this means that they do not have access to this care or these goods,
regardless of how geographically easy they would otherwise be to obtain. When patients are not
able to pay for health care, they are prevented from accessing health care services they need,
including preventative and diagnostic services. In addition, they may not be able to receive care
for chronic or disability-causing conditions. This could have serious consequences for long-term
health outcomes.
Barriers to access can be especially stark for minority populations in the United States.
Minorities are less likely to have a regular doctor, to feel like they have a choice in where they
go for care, or to have a regular doctor.26 This can be due to various reasons, but the outcomes
for minorities show that access can be a significant social determinant of health closely related to
race, ethnicity, culture, and socioeconomic status.
Language can also be a significant barrier to access, causing disparities in health
outcomes for minorities. Disparities in access to health care among Hispanic children have been
shown to be largely related to language ability.27 If a person is not able to speak or understand
159
the language used by the health care system they have access to, they will not have effective
access to health care.
Effective communication between patient and doctor is critical for good outcomes, yet
many patients who need a language interpreter still go without one.28 Providing patients with
adequate interpretation services and ensuring that they understand key elements of their health,
including their care plan is crucial to reducing health disparities among minority populations.
Some ethnic disparities, especially for Hispanics, have been explained at least in part by
differences in English fluency.29 Understanding language is the first step that a person must take
before they can even begin to understand messages of health care providers and ultimately gain
meaningful access to health care services.
Full access to healthcare includes cultural, linguistic, and financial access.30 This means
that health care should be culturally and linguistically appropriate, as well as affordable for all
groups – including ethnic, racial, and cultural minorities, and those in low socioeconomic
spheres of society. Only when these three conditions are met will all patients be able to
meaningfully access care.
The goal of access to health care is for it to be equitable. Equitable access means equal
access for those in equal need and unequal access for those who have unequal need and are
influenced by factors on the supply side – including geographical availability and proximity,
resource distribution; and the demand side – including individual’s ability to pay for health care,
knowledge, information, cultural beliefs, indirect financial costs, opportunity cost of patient’s
time, and preferences.31 Patients with equal need for certain services should have the same or
similar access to those services, provided that ensuring access is financially and logistically
reasonable.
160
This notion can further be explained through human rights principles, which should guide
policy to address the ethical challenges stemming from social determinants of health.
4aii Developing Normative Ethics in a Multicultural Society through Human Rights Principles
Secular and Religious Bioethics
Secular and religious bioethics are offer competing theories of how to define “right” or
“good” in health care. Many secular philosophers rely on reason – believing that reason can
deem certain behaviors ethical or unethical through thought process or negotiation in social
contracts – or experience and senses – believing that the human body can weight moral benefits
and harms to self and others through sense and perception.32 Religious theories are also common
when approaching ethical theory in health care. Religious theories tend to rely on revealed truth
or natural theology. Revealed religious truth or “faith knowledge” means that members of a
particular religion have knowledge of true morality that has been revealed to them through their
religious doctrine.33 Natural theology is a theory of religious ethics that states that there are
natural ways of knowing moral norms, and that these norms are revealed by reason.34 These
varying and often conflicting theories offer a confusing array of approaches to health care ethics
in multicultural societies.
Human Rights
Choosing one of these normative moral theories – secular or religious – is not possible
because, in a multicultural society, there are conflicting values, backgrounds and cultural beliefs
that keep individuals from agreeing on theories outlining specifics of what is right and what is
wrong. In other words, a multicultural society such as the United States faces moral pluralism, or
morally diverse individuals and groups, which can attempt to engage with each other through
161
bridging foundational differences, but should keep in mind that agreement about moral a
philosophy does not necessarily mean that it is justified, i.e. consensus can arise out of pressure
from power structures or mindless conformity rather than true moral justification.35 Using
methodologies of bridging theories and justifying actions can be helpful when navigating
through differing moral beliefs within a multicultural society, however there are foundational
principles that should be started with and used as a foundation for these justifications. These
foundational principles are under the umbrella of human rights.
Human rights principles are principles that apply to everyone simply for the reason that
they are part of humankind. Human rights can and should be applied to health care ethics
because of its universal application and ability to create a guideline or framework for ethical
decision-making.
The United Nations’ Universal Declaration on Human Rights provides common
standards for fundamental human rights to be universally protected, and includes articles
outlining these established rights.36 Especially important for the right to health care are the
human rights principles outlined in the declaration of respect for human vulnerability and justice.
To be vulnerable has been defined as “… a means to face a significant probability of
incurring an identifiable harm while substantially lacking ability and/or means to protect
oneself.”37 All humans are – or are at risk for – being vulnerable at some point in their lifetime,
although some individuals facet a greater risk for vulnerability than others. In health care, and
often in terms of medical research, some patients are considered to be more vulnerable than
others. The International Ethical Guidelines for Biomedical Research Involving Human Subjects,
prepared by the Council for International Organizations of Medical Sciences (CIOMS) in
collaboration with the World Health Organization (WHO), defines vulnerability as “a substantial
162
incapacity to protect one’s own interests owing to such impediments as lack of capability to give
informed consent, lack of alternative means of obtaining medical care or other expensive
necessities, or being a junior or subordinate member of a hierarchical group.”38 A person is
vulnerable when they are not able to protect themselves and are at a higher risk for harm.
All humans face vulnerability making it a shared trait of humankind and one in which
incurs social and moral obligation. Societies have an obligation to protect their most vulnerable,
and those within a society can feel comfortable that if they ever develop vulnerability, they too
will be cared for.
Human vulnerability is closely related to social determinants of health, including race,
ethnicity, culture, socioeconomic status and health care access. Vulnerable populations face
critical barriers to care associated with multifactorial risk, including minority race, low
socioeconomic status and lack of health care access, which predispose and enable poor access to
care, and result in unmet healthcare needs associated with cost.39 Certain groups are more
vulnerable than others and therefore need more social protections than others. These social
protections extend to the protection of health for vulnerable populations. An ethical framework
for addressing ethical issues in a multicultural society begins with the acknowledgement of
human vulnerability and effort to address and protect vulnerable individuals and groups. Those
that are socially disadvantaged deserve special protection, consideration and prioritization based
on their vulnerable status.
Health care is often touted as being unbiased, as shown in the emphasis on evidence-
based medicine; however, evidence-based medicine often inherently excludes benefits to
vulnerable populations. Evidence-based medicine’s implicit promise is a commitment to
objectivity and fair distribution, but vulnerable groups are often excluded from these benefits and
163
inequalities are often actually increased due to low socioeconomic status, ethnicity, age, gender,
and mental ill health.40 If the focus on medical research that forms the foundation for evidence-
based medicine is based on wealthy and advantaged populations only, these evidence-based
interventions will be inherently designed to serve advantaged populations and may ignore the
needs of vulnerable populations altogether.
In consideration of the nature of human vulnerability, the principle of justice should be
applied to ensure that health care is fairly provided to those who are disadvantaged, with health
care resources prioritizing those who need them the most.
Justice is important in health care especially because of the implications that injustices
could incur on society as a whole. Health care deserves special protection because of its special
moral importance founded in social obligation to protect of opportunity, meaning that health care
helps to protect normal functioning of individuals and thus protects their ability to participate in
political, social, economic life of society.41 Health is necessary for people to reach their basic
functional capacity and most importantly to realize opportunity to meaningfully participate in
society.
In a multicultural society, justice must be approached from a human rights perspective.
Moral norms differ culture to culture which sometimes leads to a gap between is/ought, meaning
that a society’s moral norms can explain why a norm is present yet these norms may still not be
morally justified.42 Human vulnerability combined with justice shows that those who are most
vulnerable should be protected and resources provided should coincide with need. In this model,
one group will not necessarily be prioritized over another because once a persons’ need is gone,
they will enter back into the group receiving the fewer resources. One group or type of individual
164
will not always get more resources unless they always need more resources, which would be
unlikely or very rare.
Among many approaches, ethical decision-making can be based on utility (the
greatest good for the greatest number,) deontology (nature of duty,) or consequentialism
(decisions based on their consequences,) but a just outcome balances these approaches, as well as
accountability and learning.43 Most importantly, these approaches should be founded in respect
for human vulnerability, with the specifics of decisions made based on applicable theories. The
basis for which goods and services should be prioritized should be based on human rights.
Justice involves priority setting – including how to use resources, which outcomes should
be emphasized, to what degree to give priority to those who are worse off – which can be
achieved through a model with four conditions: a publicity condition, a relevance condition
(reasonable explanation of priorities), a revision and appeals condition, and a regulative
condition.44 In health care, this priority setting is and should be very closely related to human
rights, specifically respect for human vulnerability.
This definition of justice couched in respect for human vulnerability is necessary
in order to respect the multicultural layers of society and needs of specific groups within a
multicultural society. There is cross-cultural variation in understanding of morality including
what is “reasonable” and “normal,” attitudes toward health and healing, beliefs about illness and
suffering, beliefs about death, family obligations and what constitutes norms, leading to and
contextualized patterns of social life accounts of moral reasoning.45 These variations in specifics
about what is reasonable and what needs to be done can still be respected within the confines of
respect for human vulnerability and justice.
165
Human vulnerability and justice will determine when there is need for intervention and
the amount of resources society is willing to contribute to that intervention. Once this has been
decided, strategies of cultural competency can and should be used to determine details and
nuances of providing those resources. Organizational policy focused on cultural competency and
based on human rights principles of respect for human vulnerability and justice can therefore
alleviate effects of social determinants of health and ultimately improve health care quality.
4aiii Organizational Policy focused on Cultural Competency to address Social Determinants of Health & Improve Quality
Human rights serve as a foundation for ethical policy within health care organizations. In
order to begin addressing the ethical challenges presented by a multicultural society – including
race, ethnicity, culture, socioeconomic status, and barriers to access – health care organizations
should develop a policy of cultural competency. When founded in human rights, this
organizational policy can impact social determinants of health and ultimately improve quality of
care.
Organizational Policy Focused on Cultural Competency
Cultural competency is the tool structured by organizational policy that can begin to
address the ethical challenges facing multicultural societies. It can help to address the social
determinants of health including race, ethnicity, culture, socioeconomic status, and access. It is
well-founded in the human rights principles of respect for human vulnerability and justice, and
can help organizations achieve their goals of improved quality of care.
Cultural competence falls into three buckets – organizational cultural competence,
systematic cultural competence, and clinical cultural competence, each with their own unique
challenges such as problems with lack of diversity in health care leadership and workforce,
poorly designed systems for diverse patient populations, and poor cross-cultural communication
166
between providers and patients.46 Organizational policy can address all of these buckets.
Organizational cultural competence involves the health care organization having structures in
place for a culturally competent environment for employees and patients. Systematic cultural
competence means culturally competent systems within the organization that facilitate culturally
competent care. Clinical cultural competence is at the provider and staff level for providing
culturally competent clinical care for patients.
Health care organizations can approach cultural competence using many strategies.
Health care organization interventions can include evidence-based cost control, improving
financial incentive structure, providing meaningful interpretation services, using community
health workers, incorporating multi-disciplinary teams, and improving patient education and
patient empowerment.47 The organization can use evidence-based cost control as a justification
for enhancing cultural competence policy and training within its organization. The health care
organization can improve the financial incentive structure for providing culturally competent
care. It can provide interpretation services for all patients who need them. It can incorporate
community health workers who understand the cultural nuances and language of the patients
who live within the same community. The organization can also incorporate multidisciplinary
teams to emphasize the importance of cultural competency. In addition, organizations can
improve patient education by including elements of cultural competence, thereby empowering
the patient to participate in their health-care decision-making with cultural sensitivity.
Organizations face many challenges when creating policy based on human rights and
cultural competency. Legal, regulatory and policy interventions can create systematic challenges
to a multicultural society – creating defragmentation of healthcare financing and delivery and
policies to that affect doctor-patient relationships.48 Organizations must work within the confines
167
of the legal, regulatory and policy environment in which it is entrenched and create
complementary organizational policies to improve cultural competency. This is not to say that
organizations should be the only level concerned about cultural competency.
All levels of the health care system, including payers and regulatory bodies, should
emphasize cultural competence at a system level, striving to provide culturally and linguistically
appropriate health care services, which will ultimately impact access, utilization, and health
status of minorities.49 Health care organizations such as hospitals and health care systems should
work together with payers and regulatory bodies to create policy that provides the most benefit
for the patient population.
One way to structure this can be implemented is through continuing medical education
(CME,) which can provide cultural competence training, guide providers to develop skills for
culturally and linguistically competent health care, and foster self-reflection, critical thinking,
and cultural humility.50 Continuing medical education is an excellent avenue for training staff
and providers on cultural competence. Since there is expectation for ongoing training and
learning, cultural competence education can be a consistent part of continuous learning.
Residency training is another important avenue for improving cultural competence in
health care. Pediatric residents who have experience in cross-cultural care have felt more
prepared to care for the diverse needs of children in the US – although more attention is needed
to address patients who have limited English proficiency, are new immigrants, or have differing
religious affiliations than their provider.51 Academic health care organizations can provide and
encourage residents to participate in training related to cultural competence. This is important
because resident physicians have self-reported that their preparedness for cultural competency
lags behind their technical and clinical skills.52 In order for residents to be able to fully realize
168
their abilities to care for patients, they will need to know how to provide culturally competent
care. Since this training is often not adequately provided in medical school, resident training
programs should provide aspects of cultural competence education. Including cultural
competence in resident training programs early on could have long-term effects of culturally
competent care throughout the rest of a resident’s career.
When providing cross-cultural training, whether it be for residents, clinical faculty or
staff, cross-cultural education can use interactive, experiential, practical, case-based approaches
to teach these attitudes, knowledge and skills.53 These techniques will help cross-cultural training
have a high level of impact as intended by the organization.
Cultural competence training should be multidimensional, addressing all of the aspects
that may affect a patient’s ability to access culturally competent care. Organizational,
professional, and individual levels of cultural competence can be conceptualized through a three-
dimensional model including race and culture-specific attributes of competence, awareness of
personal beliefs, and skills.54 Employees of an organization – including administrators,
physicians and staff can follow this model to improve cultural competency in their area. This can
and should begin with an understanding of race and culture-specific issues facing employees and
patients.
The cultural competency training can then migrate to an analysis of one’s own personal
beliefs about culture. Last, employees and providers should develop skills for addressing cultural
issues within the health care setting. These three levels of cultural competence will build on one
another and should all be included in a cultural competency training policy.
A system of cultural competency should provide a structure that facilitates organizations
and providers in their development of cultural awareness, cultural knowledge, interpersonal
169
communication skills, cultural collaboration, avoidance of stereotyping, cultural experience, and
conviction.55 The awareness and knowledge of cultures will help the provider or staff member
understand the issues, and then use interpersonal communication skills and cultural collaboration
to share in decision-making with culturally diverse patients. Cultural competence programs
should also emphasize avoiding stereotypes and having cultural experiences. This will lead to
conviction about cultural understanding and acceptance, which will be the ultimate goal of
cultural competence training.
Cultural competency training is only one part of organizational policy focused on cultural
competency. Culturally competent health care organizations provide culturally and linguistically
appropriate services, recruit and retain staff who reflect cultural diversity, provide interpreter
services or bilingual providers, facilitate cultural competency training, and offer linguistically
and culturally appropriate health education materials.56 The organization must take steps in
addition to cultural competency training to ensure a culturally competent organization.
The organization should provide services appropriate to its population and also ensure
that their staff and providers reflect the cultural diversity of the population they serve. In
addition, patient education materials developed and available to patients should be culturally and
linguistically appropriate for the patient population/s served.
Organizational policy to cultivate cultural competency should not stop at understanding
diverse cultures. Cultural competency, including linguistic competency, goes beyond cultural
awareness or sensitivity though and requires the cultivation of cultural knowledge, development
of skills to apply cultural knowledge, and policies that provide a structure for providers to deliver
culturally competent care.57 Employees of a health care organization should not only understand
170
what cultural competency is, they should continue to cultivate knowledge and develop skills to
apply their training in the clinical setting.
In addition, organizations can use various techniques to address cultural competence
include interpreter services, recruitment and retention of minority staff, training, coordinating
with traditional healers, use of community health workers, culturally competent health
promotion, including family and/or community members, immersion into another culture, and/or
administrative and organizational accommodation.58
When an individual staff member or employee approaches a culturally diverse
population, they should take steps to ensure that they are facilitating cultural competence with all
patients. Steps toward cultural competence should include cultivating attitudes, developing
awareness of impact culture has social values and health beliefs, obtaining background
information about patient’s cultures, performing a cultural assessment, planning culturally
sensitive care, and avoiding defensiveness.59 The provider or staff member should understand
that each patient may come from a culturally different perspective than their own and not assume
that they know about the patient’s cultural background and preferences.
Getting background about the patient and performing a cultural assessment will help the
provider to avoid harmful stereotyping and ultimately provide culturally appropriate care. The
provider should avoid begin defensive during this process and learn from their experiences and
mistakes. Providers and staff should identify cultural patterns, develop individualized care plans,
and engage in cross-cultural communication (considering all types of communication including
meanings associated with eye contact, touch, silence, space and distance) by adopting attitudes,
developing awareness, and performing cultural assessment.60 In addition, guidelines for
approaching cultural competency can include listening with sympathy and understanding,
171
explaining perceptions of the problem, acknowledging and discuss difference and similarities,
recommending treatment, and then negotiating treatment.61
Understanding one’s own cultural perspective is an important part of cultural competency
training. Physicians and health care staff must acknowledge their own potential biases when
approaching a culturally diverse population. If a provider is unable to introspectively look to see
how their biases may affect their care for a patient, they may inadvertently favor patients who are
most culturally, ethnically, racially, or theologically like themselves.
A cultural competency curriculum should focus on examining and understanding
attitudes, gaining knowledge of existing disparities, acquiring communication skills,
understanding one’s own racial and cultural background, understanding the concept of cultural
diversity, identifying types and cause of disparities, familiarity the community where practice is,
ability to conduct cross-cultural and cross-language clinical encounters, and use of patient
centered approach.62 These techniques and approaches will help the provider to navigate through
a culturally competent episode of care and should be an emphasis for cultural competency
training.
Health care organizations can look to the National Standards for Culturally and
Linguistically Appropriate Services in Health and Health Care (National CLAS Standards) for
guidance on developing cultural competency policies. The CLAS standards include provisions
for governance, leadership, workforce, communication and language assistance, engagement,
continuous improvement and accountability – with the goals of decreasing health disparities,
enhancing health equity, and improving quality.63 These can be used as a foundation for policy
172
development and implementation within health care organizations to foster culturally competent
care.
Justification for organizational policy focused on cultural competency is based on human
rights – specifically justice for patients and respect for their vulnerability. Patients facing
disparities related to social determinants of health – race, ethnicity, culture, socioeconomic
status, and access – are in particular need of culturally competent care as vulnerable populations.
Social Determinants of Health & Quality of Care
Social determinants of health can and should be addressed through cultural competency
programs within health care organizations. Factors that affect social determinants of health such
as culture, ethnicity, and race will be more adequately addressed when an organization has an
effective cultural competency program.
Cultural competency begin with a cultural assessment. Cultural assessment should
include demographic characteristics such as age, education, occupation and income, culture-
specific epidemiological and environmental influences, and general and specific cultural
characteristics – such as cosmology, time orientation, perceptions of self, and norms, values,
customs, and general and specific health beliefs and practices such as explanatory models,
response to illness, and health behavior practices, and western health care organization and
assessment – such as examining one’s own cultural competence and sensitivity, organizational
policy and mission, and facilities and program preparation.64 This cultural assessment will help
the health care provider determine potential social factors that may affect their patient’s health. It
will also help to keep the provider from making overgeneralizations or having prejudices based
on patient’s demographic characteristics by learning about the patient’s unique background and
risk factors. Cultural assessment will also help the provider learn specifics about the patient’s
173
culture that they may not have been aware of but could affect the care the patient receives. With
an effective cultural assessment, the provider can tailor the patient’s assessment and course of
treatment to their individual needs, considering their background, values and beliefs.
Patient-centeredness, or focus on the patient’s specific needs and goals is another tool
that providers can use, although a patient-centered approach is not an adequate replacement for
cultural competence. Cultural competence focuses on the needs of minority and disadvantaged
groups while patient centeredness does not inherently address these issues –
although these two concepts should work together jointly to deliver high-quality care and
addresses issues of quality, equity, health disparities, and care for disadvantaged populations.65
Cultural competence is needed specifically to address social determinants of health that may give
certain groups or individuals a disadvantages in achieving optimal health or accessing health
care.
When a provider is working through cultural differences with a patient, they can use
justification to determine the best course of action. Justification can include aspects of time,
place, and culture, with a claim justified without necessarily admitting its moral truth and carried
out using “bridge concepts,” inter-comparative dialogue, ongoing consensus, and maximizing
respect for diversity and pluralism.66 This does not mean that the provider needs to agree with
the patient’s point of view, but if the two parties can understand each other’s’ justification for
certain decisions, it can help to come to a decision that both can accept.
Providers can also use techniques of cross-cultural communication to address disparities
caused by social determinants of health. Cross-cultural communication can be improved by
addressing health literacy, focusing on messages, becoming bilingual, understanding language
nuances, understanding of nonverbal interpretations, and using interpreters.67 These techniques
174
can help patients who are in disadvantaged social, ethnic, or cultural groups to understand their
care and how to navigate the health care system. Cross-cultural communication skills are
important for understanding between providers and patients who may have very different
backgrounds, beliefs and education. They can help to give providers a foundation for addressing
issues with their patients that they may not otherwise understand without careful consideration.
It is also important that organizational policy and employees within an organization
understand patient literacy and, more specific, health literacy of patients. Health literacy
indicates the degree that an individual is capable of obtaining, processing and understanding
basic health information, and directly influences their capacity to make good healthcare
decisions, and to communicate about their health.68 Even if a patient can read, they may not be
able to read and understand critical health care information. Making sure that verbal and written
communication tools are in a level of health care literacy that patients can understand is a crucial
step for providing adequate, appropriate, culturally competent care to patients and ultimately
addressing the health disparities caused by social determinates of health related to these factors.
Similar to cultural competence, cultural humility is a commitment to self-evaluation and
self-critique, addressing power imbalance between patient/physician, mutually beneficial
advocacy partnerships, and patient-focused interviewing and care as a lifelong commitment.69
Providers can use cultural humility on an ongoing basis to improve their communication with
culturally diverse patient populations. This technique provides an opportunity for continuous
improvement and self-reflection for health care providers and has the potential to enrich the
provider-patient relationship.
Based on the effect of sociocultural background on beliefs and behaviors, residents and
medical students should be especially participate in cultural competence programs, including
175
analysis of individual patient social context and belief system, avoidance of generalizations,
improvement in ability to understand, improvement in communication, and exploration of
meaning of illness within the patient’s social context.70 Residents and medical students are
learning the skills that they will take with them throughout their career, so emphasizing cultural
competency and giving future and young physicians the tools to provide culturally competent
care will have long-term positive effects.
Cultural competence is critical for addressing social determinants of health. Providing
culturally and linguistically appropriate services in healthcare can help to respond to
demographic changes, eliminate health disparities, improve quality, meet regulatory mandates,
give a competitive edge in the market place, and decrease risk of liability for health care
systems.71 Through cultural competence, social determinants of health can be addressed and
health care quality will improve.
Culture, environment, socioeconomic status and healthcare access contribute to
disproportionate adverse health outcomes experienced by minorities in the United States, and are
strongly related to the physician-patient trust relationship, workforce opportunities, public health,
costs to the economy, and overall quality.72 These key social determinants of health are closely
related to health care quality outcomes, and can be improved by interventions included in
cultural competency training.
Cultural competency is crucial for addressing social determinants of health to improve
quality. It is justified based on human rights principles, especially the respect for human
vulnerability and justice. Respecting certain aspects of a person’s culture, race, ethnicity, or
background that may cause them to be vulnerable is a key tenet of cultural competency. Using
cultural competency to improve quality is founded in justice because it is creating a fairer
176
environment of opportunities and social involvement which people can only achieve if they have
a baseline level of health. Factors that are out of a patient’s control like their culture and ethnicity
should not be a penalty for a patient to receive top quality care.
Health care outcomes can be improved for providers and organizations that emphasize
social determinants of health, implementing cultural competency programs to address disparities
they cause. For example, pain management could be improved through better communication
because racial and ethnic disparities in pain perception, assessment and treatment call for
education and treatment approaches that are more targeted to individual patient needs.73
Approaches to creating better understanding between provider and patient will help to facilitate
these improvements.
Disparities in health care quality can be addressed by recognizing them as a significant
quality problem, improving collection of relevant and reliable data, defining performance
measures stratified by socioeconomic position and race/ethnicity, examining population-wide
performance measures that are adjusted for socioeconomic position and race/ethnicity, and
approaching relationships between socioeconomic position and race/ethnicity in relation to
morbidity.74 The disparities caused by social determinants of health must first be recognized
before they can be addressed. Next, data to monitor these disparities and show specific areas of
improvement can help to focus goals of quality improvement through cultural competency.
These goals can be interpreted through definition of performance measures that are
stratified by key socioeconomic factors. Socioeconomic group-specific data can then be
compared against overall outcomes to see where there are disparities and which groups have the
biggest gaps in outcomes. Importantly, an analysis should also be completed on the intersection
of socioeconomic status and race/ethnicity disparities since these factors are intertwined and
177
analyzing their relationship may provide key insights on how to address them to improve quality.
Cultural competency techniques can then be used to address any issues found between different
ethnic, racial, cultural, and socioeconomic groups.
Cultural competency to improve health disparities is increasingly important as these
disparities become more acute and more prevalent. More than 30% of medical expenses can be
attributed to disparities in health experienced by minorities, which means that eliminating
disparities could reduce costs to the US health care system through the reduction of direct
expenses associated to providing care to sick and disadvantaged population as well as indirect
costs including lost productivity, absenteeism, lost wages, family leave, and quality of life.75
With limited health care resources, resource allocation and cost is an increasingly important
aspect of health care quality. Eliminating or reducing the disparities in health experienced by
minorities could have a huge impact on not just the quality of life, but also the costs to the
healthcare system, which has a limited amount of resources.
Additionally, increasing recognition of cultural influences can improve quality in
healthcare and also improve a health care organization’s bottom line by appealing to minority
customers, competing for private purchaser business, responding to public purchaser demands
and improving cost-effectiveness.76 This means that implementing cultural competency programs
can not only reduce costs for hospitals and health care systems, but could also help to bring in
more revenue. Minority populations are growing in the US, and health care organizations should
recognize their importance in growing market share for their organization. Appealing to minority
populations is then not only the right thing to do, but also the approach that makes the most sense
from a financial perspective.
178
Cultural competency is important because it can cultivate an understanding between
providers and patients and help them to understand and participate in their own health care.
Cultural competency is a crucial tool that allows providers and patients to cultivate knowledge,
awareness and respect, thus leading to a satisfactory understanding between provider and patient,
maximum patient compliance, and good outcomes.77 Patients who understand their providers
would be more equipped to follow instructions than those who are facing miscommunication
with their provider based on language or cultural barriers to communication.
Cultural competency and quality health system level factors, such as access to care,
should address key determinants of health that contribute to disparities and even though evidence
base has not been fully developed, expert opinion has indicated that cultural competency is
imperative to improving quality and eliminating health disparities.78 More research is needed on
the true effect of cultural competency on health outcomes, but it is shown as a promising, easy
and cost-effective way to address disparities in health care that reduce quality outcomes. Cultural
competency can improve these outcomes by improving a patient’s effective access to health care
and facilitate compliance and satisfaction through mutual understanding.
Evidence to support cultural and linguistic competence programs are in early the early
development phase, although the literature provides examples of benefits in terms of quality and
effectiveness of care, health outcomes and well-being with early promising but not conclusive
early results.79 Research supporting a relationship between cultural competency and patient
outcomes has been limited in depth and scope, so there is a need to increase resources to look at
cultural competency education to improve health outcomes.80 Future areas for research include
mechanisms for how cultural competency improves quality, which aspects of quality are most
179
affected by cultural competency and to what degree does cultural competency improve quality
outcomes.
Cultural competency is an important part of hospital policy to improve quality outcomes.
It can help to alleviate disparities caused by social determinants of health. It is based on a sound
ethical foundation of human rights – specifically respect for human vulnerability and justice.
Although cultural competency is extremely important, it still cannot work on its own in a
silo. In order for cultural competency to fulfil its full potential, it must be include a multi-faceted
approach. It must be a multi-level, coordinated effort with the role of patient, provider, and
context and as equally important in achieving the goals of eliminating racial and ethnic
disparities in health, improving health care quality, and achieving financial imperatives.81 With
this type of approach, cultural competency as part of an overarching organizational policy to
reduce health disparities will effectively impact quality outcomes in health care.
Determining how to approach ethical issues and justifying decisions within a
multicultural society is challenging. Justification is relative to time, place and culture, and
necessitates inter-comparative dialogue, ongoing consensus and idea of bridge concepts to
maximize respect for diversity and pluralism.82 Justification for health care decisions should be
based on human rights in order to decrease health disparities that result in negative outcomes
caused by social determinants of health. Cultural competency can help providers and patients
arrive at a mutually-agreed upon decision through these approaches. This mutual decision-
making can help to improve quality by increasing the patient’s understanding, compliance and
satisfaction. It can also help patients to make decisions based on their specific health goals and
180
goals of care. Cultural competency is a tool to navigate decision-making in a multicultural
environment.
Health care leaders can begin to address some of the challenges arising from health care
disparities by increasing interdisciplinary involvement, balancing universalism and particularism,
improving education and training of bioethicists to analyze these issues more deeply, and
creating distance from the divisive ideological politics.83 In a multicultural, pluralistic society
different perspectives on ethical decision-making should be considered, but human rights should
be considered the most basic foundation for this decision-making, specifically the human rights
principles of respect for vulnerability and justice. These human rights principles are key to
addressing the social determinants of health that lead to poor health care outcomes – including
race, ethnicity, culture, socioeconomic status and healthcare access. When addressing issues
within a multicultural society specifically, cultural competency can be used as a tool to decrease
health disparities caused by social determinates of health and therefore protect human rights.
This approach will ultimately improve quality outcomes.
4b Social Determinants and Shared Decision-Making 4bi Applying Clinical Ethics within Health Care Organizations through Shared Decision-Making
Shared decision-making describes a process where physicians and patients can
collaborate to determine a course of action that is founded in the patient’s values and goals. It
should be carried out through organizational policy related to informed consent and ethics
consultation. The roles of the organization, the physician, the patient, surrogates when necessary,
and ethics committees are integral components of the shared decision-making process.
181
What is Shared Decision-Making?
Shared decision-making can be used by health care providers and patients to determine
the best treatment option based on the patient’s values, beliefs and goals. The essential elements
of this process are: recognizing that decision needs to be made, understanding the evidence, and
incorporating patient values.84 First, the patient and physician must discuss the decision that they
are facing and determine the options available. Second, evidence related to the risks and benefits
of each option must be reviewed, including the likelihood and severity of each risk and benefit.
Third, the patient and physician should discuss the options, along with their evidence-based risks
and benefits in terms of the patient’s values and goals. This process can facilitate significant
positive outcomes for the patients.
Shared decision-making can improve care quality, improve patient experience, and
reduce costs – including the cost of surgeries and hospital admissions – through low-cost
interventions such as telephone health coaching.85 When patients have a chance to consider the
options along with their risks and benefits as they relate to their personal values, beliefs and
goals, they have the information that they need to make a truly informed decision.
Some patients and physicians face barriers to shared decision-making which should be
addressed. Issues that can cause patient reluctance to engaging in shared decision-making, such
as perceived vulnerability to physician’s good will and authority, time pressures, and fear of
being categorized as difficult, can be addressed through multifaceted structural approach
including provision of adequate reimbursement, implementation of decision-support tools,
reorganization of care, addressing differences in perspectives, and working at the organizational
level to facilitate a supportive culture and policy.86 Organizations can institute polices based on
182
this structural approach to facilitate shared decision-making between the physicians and patients
who interact within their system.
In addition, organizations can provide physicians with the education and tools to help
patients participate in shared decision-making. Barriers to shared decision-making can be
addressed at the physician level by making patients feel supported, empowered, and emotionally
safe, by using verbal and non-verbal cues of respect, addressing health literacy barriers, engaging
family members, and asking patients about fears, and sending affirming messages.87 Physicians
should be aware of the barriers that patients may be facing and proactively address these
potential barriers. At the same time, the organization should work to create a system and
structure that supports the shared decision-making process for both physicians and patients. In
other words, the systematic barriers to shared decision-making should be addressed through a
participatory, collaborative approach at the organizational, practice and physician level.88
Specifically, the organization should focus on policy related to informed consent and ethics
consultation to support shared decision-making and reduce barriers that physicians and patients
face when making decisions.
Informed Consent: The Roles of the Health Care Organization, the Physician, the Patient and the Surrogate
Informed consent is a crucial component of shared decision-making. Informed consent
encompasses legal rules, ethical doctrine, and an interpersonal processes based upon rights and
duties, as well as consequences of actions, and is intended to protect bodily integrity and
autonomy.89 It is the mechanism in which patient autonomy and right to make decisions about
one’s own body and health are fulfilled. Legal or institutionally effective rules and requirements
of informed consent are intended to create conditions that enable autonomous authorization and
promote shared decision-making.90 The health care organization, the physician, the patient have
183
important roles in this process. When the patient is incapacitated, the surrogate has an important
role as well.
Informed consent is the practical application of autonomy in the health care setting and is
carried out when the patient is informed of benefits and risks, understands the relevant
information, can comprehend the information given to them, and gives documented consent.91 It
is crucial for shared decision-making since it supports and protects the patient’s right to make
decisions about their health care. The organization’s role in this process is to create policy that
supports a robust informed consent policy that supports an ongoing process of physician-patient
collaboration.
Policies that support his process should promote shared decision-making, protect a
patient’s right to self-determination, promote well-being through discussion of pertinent
information and facilitate the patient’s voluntary agreement with their treatment plan.92 The
organization creates the policy and culture which facilitates this process. Importantly, informed
consent should be a process rather than an event, with medical decision-making as continuous
process throughout course of physician-patient relationship, where information is disclosed as it
becomes available, and receive information over time.93 The organization will create the
environment in which this process is possible, impossible, encouraged or discouraged. This
environment includes support for physicians to spend time with the patient throughout this
process.
The organization’s role is important in facilitating the physician-patient relationship,
and also when a patient is incapable of making their own decisions. A healthcare institution can
have a formal procedure to govern the process of choosing a surrogate, especially for cases when
patient does not have an advance directive or has not expressed their wishes related to a
184
surrogate decision-maker.94 The health care organization should have a structure and policy in
place for when these difficult questions arise. The organization’s policy should therefore
consider the role of the physician, the patient and the surrogate related to informed consent.
The physician’s role within the context of shared decision-making is to partner with the
patient, providing the patient with all relevant and necessary information needed to make an
informed decision. An essential element of informed consent is the disclosure performed by the
physician. Disclosure should include information about nature and purpose of proposed
treatment, risks, benefits, and available alternatives.95 The physician should provide all pertinent
information and make sure that the patient both understands and voluntarily consents to the
proposed course of treatment. Importantly, legally valid consent must include understanding and
voluntariness.96 Truth-telling is also an important part of this process.
Arguments for truth-telling include respect for others, respecting right to self-
determination, promoting fidelity and promise keeping, building trust-based relationships,
allowing a patient to make choices consistent with goals and values, promoting feelings of self-
control, and preparing for the future; while arguments against disclosure can include culture-
based comfort with disclosing medical information and acknowledging the importance of hope.97
The physician should weigh these considerations, but always prioritize the patient’s right to have
all relevant information and make autonomous decisions. With informed consent as a process
rather than a discrete event, the physician can share the information as it becomes relevant to
prevent a burdensome, overwhelming flood of information to the patient. In the shared decision-
making process, the physician can provide information to the patient as it becomes important.
This process of consent in the clinical setting should be carried out by establishing the
relationship, defining the problem, ascertaining goals of treatment, selecting an approach to
185
treatment, and follow-up.98 As a patient’s condition or context changes, their informed consent
for specific treatment options may change as well, so informed consent should not occur as a
discrete point in time, but continuously over the course of the physician-patient relationship.
The physician’s role is to provide the relevant information and to partner with the patient
to determine the best course of treatment. A patient does not have the right to receive any
treatment they demand, but they do have the right to reject a physician’s recommendation, even
if the physician considers their recommendation to be in the patient’s best interest, especially
because the patient is ultimately the person who can make a final judgment on quality of life
goals.99 The partnership created through shared decision-making mediates differing opinions that
may occur between the physician and patient. The physician ultimately is providing the
information and options, but the patient ultimately makes a decision on whether they want the
offered treatment or not.
One of the physician’s primary roles is to disclose information. Although there are
arguments for nondisclosure – such as when it is employed to avoid serious harm, perform
culturally appropriate care, or if it is in response to a patient request – disclosure generally can do
more benefit than harm because it allows patients to make informed decisions.100 Only when the
patient has all of the relevant information can he or she make an informed decision about health
care.
The patient’s role in informed consent is to provide values and goals for decision-making.
The major goals of informed consent include protection of the patient’s well-being and
promotion of autonomy.101 The patient is the central piece to informed consent since only he or
she can define what well-being means to them. The patient’s autonomy, based on their values
and goals, is central to the informed consent process.
186
Respecting a patient’s autonomy requires that patient preferences - based on patient’s
own experience, beliefs, and values – be respected, acknowledging the patient’s right to self-
determination, including the right to accept or reject recommendations of physician.102 The
patient’s role is to weigh the information and options against their own values and decide a
course of action.
A patient’s right to refusal is fundamental to concept of informed consent and patients
should be permitted to refuse treatments even if the treatment is high benefit and low risk.103 The
patient can refuse based on their own personal values and goals of treatment. The health care
organization, physician, nor any other member of the patient’s care team can make the decision
for the patient since the patient is the expert on their desired outcome – even if their desired
outcome is not what someone else would want. As long as the patient’s decisions are based on
clearly articulated values and beliefs founded in logical reasoning, the patient’s wishes must be
respected.
The patient’s autonomous choice should be protected to the extent that is possible. That
being said, complete autonomy can be difficult to achieve in a practical setting. This is because
all actions have some degree of both internal and external influences, including pressure,
possible fear of retribution, and emotional or mental weakness – although these influences
should be avoided as much as possible on the grounds of avoiding fraud and duress, promoting
of rational decisions, preventing abuse, promoting health benefits, improving doctor-patient
relationships, demystifying medicine for patients, and reducing miscommunication.104 External
influences to the patient’s decision-making process should be avoided if, when and to the extent
possible; However, it is also important not to narrowly define self-interest since a person’s
interests include their social relationships that are closely related to their values and sense of
187
self.105 The patient has a right to take their social context into consideration when making
decisions about their treatment.
The patient also has the right to waive consent if they desire to do so. This is morally
acceptable because a properly given consent waiver maintains the values of self-determination,
placing the patient as the ultimate decision-maker and letting them decide if they will experience
harm resulting from disclosure, such as anxiety from the decision process.106 The patient can
delegate decision-making process to a proxy if they wish to do so. Not all patients have the same
decision-making preferences. Some patients do not want to make their own or prefer to entrust
decision-making to others for reasons such as the emotional, intellectual and physical weakness
from being sick and psychological barriers to understanding.107
A patient may choose to delegate decision-making for their care even when are
competent to make their own decisions. If a patient is not competent to make decisions, then
someone will be chosen to make decisions for them as well. This necessitates the role of a
surrogate decision-maker.
The role of the surrogate is to make decisions for the patient if he or she is unable to
make decisions for him or herself. The role of the surrogate becomes necessary if the patient
does not have or loses capacity to make decisions. Incapacity can be determined by the patient’s
health care team, specifically their physician. Capacity is most commonly determined by the
attending physician, and can be related to patient characteristics such as intoxication,
developmental disability, dementia, psychosis, or anything that would not render a patient unable
to understand or make rational decisions.108 The patient can be temporarily or permanently
unable to make health care decisions.
188
In addition, the patient could be incapable of making certain decisions about their health
care, but able to make other decisions. The process of determining competence should include
defining what is meant by incompetent patient, and who should make decisions for patient if they
are incompetent so that, at a minimum, the goals of informed consent can be pursued on their
behalf.109 This can be a complex task, because the continuum of decision making capacity is
multifactorial, including the degree to which a patient can engage in discussions, understand
pertinent information, appreciate relevance of information, and use reasoning to make and
communicate a choice that is consistent with their values and goals.110
The process of determining competence begins with the informed consent process.
Competence can only be determined once consent and disclosure process has begun since it
requires that a patient must be able to make and communicate a decision, understand the factual
basis for their decision, appreciate the nature and consequences of treatment, process information
logically.111 Only when the patient begins engaging in this decision-making canheir capacity can
be assessed.
Health care providers should look for evidence of a patient’s incapacity, whether the
patient is mentally capable to make decisions, whether they are legally competent, whether they
have capacity to refuse and consent to care, if they have the ability to understand relevant
information, can appreciate consequences of the proposed course of action, and can
communicate a rational choice in accordance with their values.112 Organizational policy should
clearly outline the process for determining capacity of a patient. A patient’s level of competence
determines moral authorization for health care decisions and moral validity of consent based on
the patient’s ability to exercise autonomy in processing and understanding information, weighing
189
consequences, applying values, making consistent decisions over time, and communicating
preferences.113
If a patient is incapacitated, it should be determined whether they have expressed prior
preferences through advanced planning – including establishing a durable power of attorney for
health care or an advanced directive – and if they need a surrogate, who would be the appropriate
surrogate to make decisions for the patient who can make a substituted judgement for the
patient.114 If a patient has freely and clearly expressed their wishes previously, these should be
honored if and when possible. It is especially useful if the patient has documented an advance
directive and/or who should be their surrogate, though wishes that were expressed in advance of
serious illness have limits since these decisions made may not have been informed, patients can
change their minds, directives can be open to interpretation, and expressed wishes may conflict
with patient’s best interest.115
When a patient has not previously expressed their wishes, health care providers should
avoid purely paternalistic approaches and consider what is known about patient’s wishes, what
can be inferred about patient’s wishes and what is the best interest of the patient.116 A patient’s
autonomy should be maintained to the degree possible by making judgments about what the
patient would have wanted for him or herself. This can be performed through a surrogate
decision-maker.
Surrogates – whether court-appointed guardians, non-relatives selected by the patient, or
family members – can be problematic when there are emotional barriers to decisions, decisions
made are inconsistent with the patient’s values, there are conflicts of interests, and when there
are disagreements among potential surrogates.117 Nevertheless, a surrogate is the best tool that
health care providers have to provide information and guide decisions based on the patient’s
190
values. Surrogate decision-making using substituted judgment is solution that is closest to
maintaining the patient’s autonomy.
A surrogate should avoid bias and use substituted judgement, taking the place of the
patient in the informed consent process through collaborative decision-making with physician
while placing the patient’s values, goals and preferences into the decision-making process to the
extent possible and attempting to replicate the decision that the patient would have made for
themselves.118 The surrogate should decide as though he or she was the patient with the
information that is available about the patient’s values, beliefs and goals. The surrogate acts as
the patient in the shared decision-making process when the patient is not able to participate him
or herself.
When conflicts or ethical dilemmas arise from the individuals directly involved in the
shared decision-making process, ethics committees can help to mediate decisions through ethics
consultation.
4bii Addressing Social Determinants of Health through Organizational Policy focused on Shared Decision-Making
Shared decision-making as supported by organizational policy can reduce health
disparities related to social determinates of health. Informed consent and ethics consultation can
help to alleviate disparities caused by social determinants of health. Coercion is not always overt,
and instead is often structural, meaning that societal, cultural, economic and/or political realities
can make it so that an individual can only realistically make only possible choice.119 Shared
decision-making can be used to alleviate some of these structural barriers and support the patient
in making decisions based on his or her values, beliefs and goals for care. This includes
socioeconomic status, race, ethnicity, culture, language and geographic barriers to health.
191
Socioeconomic Status, Race, Ethnicity, Culture and Language
Patients are influenced by risks and resources in their physical and social environments
often related to multiple dimensions of race, ethnicity and socioeconomic status, which combine
and accumulate to influence health outcomes.120 Socioeconomic status is one dimension that
significantly affects a patient’s ability to effectively interact with the health care system. Patients
with a disadvantaged socioeconomic status tend to have worse outcomes compared to those in
more advantaged situations. For example, long term breast cancer survival outcomes could be
improved by targeting patients with low socioeconomic status.121
Through shared decision-making as carried out through the informed consent process and
ethics consultation, the burdens of health disparities related to disadvantaged socioeconomic
status can be ameliorated.
The mechanism of how socioeconomic status affects health outcomes is not definitive.
Interpersonal interactions and experiences, such as exposure to social dominance expressed by
others and perceptions of low relative status, may be one mechanism linking socioeconomic
status to poor health outcomes such as cardiovascular disease.122 Other possible causal links or
correlations between socioeconomic status and poor health comes may include education level
and ability to pay for health care services.
The informed consent process as part of shared decision-making can begin to address
some of the barriers to health related to socioeconomic status. Through the informed consent
process based on shared decision-making, health care providers can determine the gaps in the
patient’s needs to be addressed through their interaction with the health care system. Health care
192
providers should recognize that those who face burdens of disadvantaged socioeconomic status
may face unique challenges compared to those with a more advantaged status.
Informed consent requires decisional capacity, disclosure and understanding of
information, voluntariness and clear communication of consent or refusal.123 Understanding and
voluntariness are key pieces of informed consent when addressing patients with disadvantaged
socioeconomic status. The informed consent process should be used to ensure that patients are
able to understand and voluntarily consent to treatment or care options regardless of their
socioeconomic status.
Ethics consultation can also help to address issues related to socioeconomic status and
shared decision-making.
When an ethical question requiring ethics consultation is presented, the patient’s
socioeconomic status and potential associated barriers should be considered as part of the
consultation process. This is aligned with the goals of ethics consultation, which are to clarify the
facts of a case, identify and analyze ethical uncertainty and conflict, and to build consensus
among stakeholders.124 Since the patient’s socioeconomic status can have such a significant
impact on these goals, the ethics committee or consultant should consider ways in which
socioeconomic status could be influencing the case. For example, social support systems could
have an influence on the patient’s beliefs, values and goals related to socioeconomic status.
Optimistic self-belief and social support could help to explain the considerable variation
in health across the socioeconomic continuum, meaning that some individuals and groups could
be more resilient based on psychological or social resources.125 Considering these factors during
an ethics consultation can help to facilitate shared decision-making among health care providers
193
and patients since it can help with understanding of the context in which the patient is making
decisions.
Closely related to and often overlapping with socioeconomic status, race, ethnicity,
culture and language can also have a significant impact on the effectiveness of shared decision-
making in the health care setting.
Socioeconomic Status, Race, Ethnicity, Culture and Language
Race, ethnicity, culture and language can also have a significant impact on health
outcomes and shared decision-making. Although often intertwined with socioeconomic status,
race, ethnicity, culture and language present unique barriers to shared decision-making within the
health care setting. For example, a high socioeconomic position may not necessarily alleviate the
toxic effects of discrimination related to the psychosocial conditions and stresses tied to minority
status.126 These factors should be considered as presenting unique challenges to clinical ethics
and the shared decision-making process.
Race, ethnicity, culture and language can significantly influence a patient’s ability to
engage in the informed consent process. Therefore, informed consent needs to be addressed
within the context of culture, with a patient having the right to autonomously decide who will be
involved in decision-making related to their health.127 People with different cultural or ethnic
backgrounds may have different expectations or perceptions that affect their health-related
decisions and basic assumptions of informed consent may not be culturally relevant for some
individuals or groups, necessitating a culturally responsive process for decision-making.128
Shared decision-making can facilitate a culturally sensitive informed consent process via
organizational policy that allows for flexibility and cultural understanding within the process.
194
Language barriers can also be addressed through shared decision-making and the
informed consent process. Addressing language barriers to informed consent is a crucial aspect
of shared decision-making and clinical ethics since a patient cannot begin to understand
treatment options, risks and benefits if they do not even understand the language in which the
information is presented. Patients with limited English proficiency have been shown to have low
rates of documented informed consent in the United States.129 Policy that provides the structure
for the informed consent process should take language proficiency into consideration and
provide support for patients who do need support related to language skills, up to and including
interpretation services. Interpreters are essential for patients who do not understand the language
of their physician. When no trained interpreter is available, serious communication problems
such as misinterpretation, inaccurate or incomplete information, and loss of privacy, can occur so
low cost strategies such as translating key documents into Spanish, testing and training clinicians
and staff for bilingual and interpretation skills, and training of how to effectively use interpreters,
scheduling extra time for consulting requiring interpretation should be implemented by health
care organizations whenever possible.130
Improving the informed consent process as based on shared decision-making is one way
to address health disparities related to race, ethnicity, culture and language. Ethics consultation
should also take these factors into consideration, supporting the goals of shared decision-making
Race, ethnicity, culture and language should be considered when performing ethics
consultation since these factors can strongly influence a patient’s understanding of key issues, as
well as thier values and goals of care. Although racial or ethnic difference do not necessarily
constitute cultural differences, not all conflicts between people of different cultures are cultural
conflicts, and some cultural differences are not obvious, cultural values, beliefs, and behaviors
195
do often determine an individual’s reaction to illness and death.131 In order for ethics consultants
to make decisions based on the foundations of shared decision-making, these factors should be
considered when analyzing and making recommendations on any case.
Quality of life perceptions can be influenced by these factors as well. Quality of life, or
degree of satisfaction a person experiences with their own life, should be discussed between the
patient and physician to determine the most desirable and attainable outcome, how it can be
achieved, risks and disadvantages associated with each decision, and potential long-term
consequences.132 A person’s race, culture and ethnicity can significant influence their
perceptions of quality of life. Quality of life assessment raises questions about changes in
treatment plans, like foregoing life-sustaining treatment, and how to care for patients who face
severely or profoundly diminished quality of life.133 These decisions can be heavily influenced
by a patient’s background and current context.
In addition to socioeconomic status, race, ethnicity, culture and langue, a patient’s
physical location or proximity to accessing health care services can significantly affect their
ability to engage in shared decision-making.
Geographic Location and Access
The location in which a patient lives can significantly affect their ability to access health
care and engage in shared decision-making. This can be especially true for individuals and
groups who live in rural areas. Barriers to receiving health services in rural areas can include
lack of knowledge of available resources, cost of services, difficulty navigating the system,
difficulty finding qualified providers, and proximity to services.134 These factors can all
influence a patient’s ability to engage in shared decision-making.
196
A patient’s geographical location can affect their access to health-related services as well.
For example, a neighborhood food environment can have a significant impact on health and
accessibility to healthy food can be affected by physical distance from food sources, personal
mobility, and environmental barriers such as safety concerns, and facilitators such availability of
public transit service.135 These factors influence health outcomes for groups and individuals in
disadvantaged geographic areas, including many rural areas. In addition, health care needs such
as housing and transportation can be affected by geographic location and availability of health
resources. For example, adults with multiple sclerosis, can face barriers to obtaining specialized
housing, transportation, and resources needed to manage their progressive and episodic illness.136
Socioeconomic factors could also act in concert with geographical barriers to health care
from both individual and neighborhood level factors.137 Informed consent and ethics consultation
solutions could help to alleviate some of these barriers to accessing health care and achieving
quality health outcomes through shared decision-making.
A patient’s ability to engage in the ongoing informed consent process can be significantly
affected by their geographic location. For example, if a patient has limited transportation to
access health services, they may not have continuous or consistent interactions with a health care
provider, even if they have a condition or disease that would benefit from consistent health
service access. This transportation vulnerability can occur when transportation is a barrier to
accessing ancillary services, including availability, accessibility, accommodation, affordability
and acceptability of transportation.138
Technology could help to alleviate some of these barriers to shared decision-making and
access to information. For example, online health communities could help to alleviate
197
geographical health disparities by facilitating sharing, dissemination and creation of health
information between urban users (as net suppliers) and rural users (as net recipients.)139 Health
care organizations could incorporate the concept of information sharing via the internet to
improve the informed consent process for those who have difficulty physically accessing health
services.
New approaches to ethics consultation can also help to address geographical barriers to
health care access. For example, health care organizations can institute web-based consultation
system for rapid dissemination of cases, on-call team with a clinician and a non-clinician, adding
cases to secure ethics website with space for ethics committee comments and discussion,
allowing for timely participation from committee members at different locations.140 This could
help to provide consultation resources to patients who cannot access a hospital with a robust
ethics consultation service.
Health care organizations can alleviate the burdens caused by health disparities by
addressing social determinants of health, including socioeconomic status, race, ethnicity, culture,
language and geography. This can be accomplished through organizational policy supporting
shared decision-making, focused on two key features: informed consent and ethics consultation.
Informed consent is a process that supports autonomous decisions of patients, and ethics
consultation helps to address particularly difficult ethical conflicts.
Organizations, physicians, patients, surrogates, and ethics committees all have important
roles in practical applications of clinical ethics through shared decision-making. The
organizational role is to facilitate and provide structural support for these elements of clinical
ethics. According to the American College of Healthcare Executives, Health Care leaders have
moral obligations to professional codes, patients, the organization, employees, the community
198
and society with the fundamental ethical objectives of creating an equitable, accessible, effective,
and efficient system that maintaining or enhancing quality of life, well-being, and dignity of
patients.141 Through effective organizational leadership support for shared decision-making,
patients can have improved outcomes with fewer disparities based on social factors.
1 Thompson, P. "Seeking Common Ground in a World of Ethical Pluralism: A Review Essay of Moral Acquaintances: Methodology in Bioethics by Kevin Wm. Wildes, S.J." HEC Forum 16, no. 2 (2004): 114‐119.
2 Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Washington D.C.: Georgetown University Press, 2012. 103‐106
3 Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Washington D.C.: Georgetown University Press, 2012. 137‐138
4 Charlesworth, M. "Don't Blame the 'Bio'‐‐Blame the 'Ethics': Varieties of (Bio)Ethics and the Challenge of Pluralism." J Bioeth Inq 2, no. 1 (2005): 10‐7.
5 Mbugua, K. "Respect for Cultural Diversity and the Empirical Turn in Bioethics: A Plea for Caution." J Med Ethics Hist Med 5 (2012): 1.
6 Huff, Robert M., Michael V. Kline, and Darleen V. Peterson, eds. Health Promotion in Multicultural Populations: A Handbook for Practitioners and Students. Third edition. ed. Thousand Oaks: Sage, 2015, chapter 1.
7 Turner, L. "From the Local to the Global: Bioethics and the Concept of Culture." J Med Philos 30, no. 3 (2005): 305‐311.
8 Fagan, A. "Challenging the Bioethical Application of the Autonomy Principle within Multicultural Societies." J Appl Philos 21, no. 1 (2004): 15‐31.
9 Turner, L. "From the Local to the Global: Bioethics and the Concept of Culture." J Med Philos 30, no. 3 (2005): 312‐316.
10 Bach, P. B., L. D. Cramer, J. L. Warren, and C. B. Begg. "Racial Differences in the Treatment of Early‐Stage Lung Cancer." N Engl J Med 341, no. 16 (1999): 1198‐205.
11 Collins, Karen Scott, Dora L. Hughes, Michelle M. Doty, Brett L. Ives, Jennifer N. Edwards, and K. Tenney. "Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans. Findings from the Commonwealth Fund 2001 Health Care Quality Survey." 2002. 25‐34
12 Burgess, Diana Jill, Megan Crowley‐Matoka, Sean Phelan, John F. Dovidio, Robert Kerns, Craig Roth, Somnath Saha, and Michelle van Ryn. "Patient Race and Physicians' Decisions to Prescribe Opioids for Chronic Low Back Pain." Social Science & Medicine 67, no. 11 (2008): 1852‐60.
13 Blackhall, L. J., G. Frank, S. T. Murphy, V. Michel, J. M. Palmer, and S. P. Azen. "Ethnicity and Attitudes Towards Life Sustaining Technology." Soc Sci Med 48, no. 12 (1999): 1779‐89.
14 American College of Physicians. "Racial and Ethnic Disparities in Health Care, Updated 2010." Philadelphia, 2010. 15 Shaw, B. A., K. McGeever, E. Vasquez, N. Agahi, and S. Fors. "Socioeconomic Inequalities in Health after Age 50: Are Health Risk Behaviors to Blame?". Soc Sci Med 101 (Jan 2014): 52‐60.
16 Businelle, M. S., B. A. Mills, K. G. Chartier, D. E. Kendzor, J. M. Reingle, and K. Shuval. "Do Stressful Events Account for the Link between Socioeconomic Status and Mental Health?". J Public Health (Oxf) 36, no. 2 (Jun 2014): 205‐12.
17 Green, M. J., and M. Benzeval. "The Development of Socioeconomic Inequalities in Anxiety and Depression Symptoms over the Lifecourse." Soc Psychiatry Psychiatr Epidemiol 48, no. 12 (Dec 2013): 1951‐61.
18 Hernandez, E. M. "Provider and Patient Influences on the Formation of Socioeconomic Health Behavior Disparities among Pregnant Women." Soc Sci Med 82 (Apr 2013): 35‐42.
19 van Ryn, M., and J. Burke. "The Effect of Patient Race and Socio‐Economic Status on Physicians' Perceptions of Patients." Soc Sci Med 50, no. 6 (2000): 813‐28.
199
20 Lynch, John, Smith George Davey, Marianne Hillemeier, Mary Shaw, and et al. "Income Inequality, the Psychosocial Environment, and Health: Comparisons of Wealthy Nations." The Lancet 358, no. 9277 (2001): 194‐200.
21 Olson, Maren E, Douglas Diekema, Barbara A Elliott, and Colleen M Renier. "Impact of Income and Income Inequality on Infant Health Outcomes in the United States." Pediatrics 126, no. 6 (2010): 1165‐73.
22 Braveman, P., and S. Gruskin. "Poverty, Equity, Human Rights and Health." Bull World Health Organ 81, no. 7 (2003): 539‐45.
23 Levine, Mark A., Matthew K. Wynia, Paul M. Schyve, J. Russell Teagarden, David A. Fleming, Donohue Sharon King, J. Anderson Ron, James Sabin, and Ezekiel J. Emanuel. "Improving Access to Health Care: A Consensus Ethical Framework to Guide Proposals for Reform." The Hastings Center Report 37, no. 5 (2007): 14‐19.
24 Washington, Donna L., Jacqueline Bowles, Somnath Saha, Carol R. Horowitz, Sandra MoodyAyers, Arleen F. Brown, Valerie E. Stone, Lisa A. Cooper, and Disparities in Health Task Force Writing group for the Society of General Internal Medicine. "Transforming Clinical Practice to Eliminate Racial–Ethnic Disparities in Healthcare." Journal of General Internal Medicine 23, no. 5 (2008): 685‐91.
25 Collins, Karen Scott, Dora L. Hughes, Michelle M. Doty, Brett L. Ives, Jennifer N. Edwards, and K. Tenney. "Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans. Findings from the Commonwealth Fund 2001 Health Care Quality Survey." 2002. 45‐48
26 Collins, Karen Scott, Dora L. Hughes, Michelle M. Doty, Brett L. Ives, Jennifer N. Edwards, and K. Tenney. "Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans. Findings from the Commonwealth Fund 2001 Health Care Quality Survey." 2002. 35‐44
27 Weinick, R. M., and N. A. Krauss. "Racial/Ethnic Differences in Children's Access to Care." Am J Public Health 90, no. 11 (2000): 1771‐4.
28 Collins, Karen Scott, Dora L. Hughes, Michelle M. Doty, Brett L. Ives, Jennifer N. Edwards, and K. Tenney. "Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans. Findings from the Commonwealth Fund 2001 Health Care Quality Survey." 2002. 9‐20
29 Fiscella, K., P. Franks, M. P. Doescher, and B. G. Saver. "Disparities in Health Care by Race, Ethnicity, and Language among the Insured: Findings from a National Sample." Med Care 40, no. 1 (2002): 52‐9.
30 Barr, D. A., and S. F. Wanat. "Listening to Patients: Cultural and Linguistic Barriers to Health Care Access." Fam Med 37, no. 3 (Mar 2005): 199‐204.
31 Oliver, A., and E. Mossialos. "Equity of Access to Health Care: Outlining the Foundations for Action." J Epidemiol Community Health 58, no. 8 (Aug 2004): 655‐8.
32 Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Washington D.C.: Georgetown University Press, 2012. 139‐148
33 Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Washington D.C.: Georgetown University Press, 2012. 107‐129
34 Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Washington D.C.: Georgetown University Press, 2012. 130‐136
35 Thompson, P. "Seeking Common Ground in a World of Ethical Pluralism: A Review Essay of Moral Acquaintances: Methodology in Bioethics by Kevin Wm. Wildes, S.J." HEC Forum 16, no. 2 (2004): 120‐128.
36 UN General Assembly, Universal Declaration of Human Rights, 10 December 1948, 217 A (III) 37 Schroeder, D., and E. Gefenas. "Vulnerability: Too Vague and Too Broad?" Camb Q Healthc Ethics 18, no. 2 (Apr 2009): 113‐21.
38 Council for International Organizations of Medical Sciences (CIOMS) & World Health Organization (WHO) “International Ethical Guidelines for Biomedical Research Involving Human Subjects.” Geneva: 2002.
39 Shi, Leiyu DrPH M. P. A. M. B. A., and Gregory D. PhD Stevens. "Vulnerability and Unmet Health Care Needs." [In English]. Journal of General Internal Medicine 20, no. 2 (Feb 2005): 148‐54.
40 Rogers, W. A. "Evidence Based Medicine and Justice: A Framework for Looking at the Impact of Ebm Upon Vulnerable or Disadvantaged Groups." J Med Ethics 30, no. 2 (Apr 2004): 141‐5.
41 Daniels, Norman, “Justice, Health and Health Care,” in Medicine and Social Justice: Essays on the Distribution of Health Care, edited by Rhodes, Rosamond et. al. Oxford: Oxford University Press, 2012: 17‐20.
42 Gordon, J. S. "Global Ethics and Principlism." Kennedy Inst Ethics J 21, no. 3 (2011): 251‐253.
200
43 Dekker, Sidney. Just Culture: Balancing Safety and Accountability. Burlington, VT: Ashgate Publishing Company, 2014:1‐10.
44 Gruskin, S., and N. Daniels. "Process Is the Point: Justice and Human Rights: Priority Setting and Fair Deliberative Process." Am J Public Health 98, no. 9 (Sep 2008): 1573‐7.
45 Turner, L. "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings." Health Care Anal 11, no. 2 (2003): 103‐104.
46 Betancourt, Joseph R., Alexander R. Green, and J. Emilio Carrillo. "Cultural Competence in Health Care: Emerging Frameworks and Practical Approaches." The Commonwealth Fund, 2002.
47 Smedley, Brian D., Adrienne Y. Stith, and Alan R. Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington: The National Academies Press, 2002:189‐198.
48 Smedley, Brian D., Adrienne Y. Stith, and Alan R. Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington: The National Academies Press, 2002:182‐188.
49 Chin, J. L. "Culturally Competent Health Care." Public Health Reports 115, no. 1 (2000): 25‐33. 50 Like, Robert C. "Educating Clinicians About Cultural Competence and Disparities in Health and Health Care." Journal of Continuing Education in the Health Professions 31, no. 3 (2011): 196‐206.
51 Frintner, M. P., F. S. Mendoza, B. P. Dreyer, W. L. Cull, and D. Laraque. "Resident CrossCultural Training, Satisfaction, and Preparedness." Acad Pediatr 13, no. 1 (2013): 65‐71.
52 Weissman, J. S., J. Betancourt, E. G. Campbell, E. R. Park, M. Kim, B. Clarridge, D. Blumenthal, K. C. Lee, and A. W. Maina. "Resident Physicians' Preparedness to Provide Cross‐Cultural Care." JAMA 294, no. 9 (2005): 1058‐67.
53 Smedley, Brian D., Adrienne Y. Stith, and Alan R. Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington: The National Academies Press, 2002:199‐214.
54 Sue, Derald Wing. "Multidimensional Facets of Cultural Competence." The Counseling Psychologist 29, no. 6 (2001): 790‐821.
55 Huff, Robert M., Michael V. Kline, and Darleen V. Peterson, eds. Health Promotion in Multicultural Populations: A Handbook for Practitioners and Students. Third edition. ed. Thousand Oaks: Sage, 2015, chapter 3.
56 Anderson, L. M., S. C. Scrimshaw, M. T. Fullilove, J. E. Fielding, and J. Normand. "Culturally Competent Healthcare Systems. A Systematic Review." Am J Prev Med 24, no. 3 Suppl (2003): 68‐79.
57 Brach, C., and I. Fraser. "Can Cultural Competency Reduce Racial and Ethnic Health Disparities? A Review and Conceptual Model." Med Care Res Rev 57 Suppl 1 (2000): 181‐184.
58 Brach, C., and I. Fraser. "Can Cultural Competency Reduce Racial and Ethnic Health Disparities? A Review and Conceptual Model." Med Care Res Rev 57 Suppl 1 (2000): 185‐203.
59 Narayan, Mary Curry. "Six Steps toward Cultural Competence: A Clinician’s Guide." Home Health Care Management & Practice 14, no. 1 (2001): 40‐48.
60 Maier‐Lorentz, M. M. "Transcultural Nursing: Its Importance in Nursing Practice." J Cult Divers 15, no. 1 (2008): 37‐43.
61 Berlin, Elois Ann, and William C. Fowkes. "A Teaching Framework for Cross‐Cultural Health Care—Application in Family Practice." Western Journal of Medicine 139, no. 6 (1983): 934‐38.
62 Smith, W. R., J. R. Betancourt, M. K. Wynia, J. Bussey‐Jones, V. E. Stone, C. O. Phillips, A. Fernandez, E. Jacobs, and J. Bowles. "Recommendations for Teaching About Racial and Ethnic Disparities in Health and Health Care." Ann Intern Med 147, no. 9 (2007): 654‐65.
63 U.S. Department of Health and Human Services. Think Cultural Health. Retrieved January 13, 2018. https://www.thinkculturalhealth.hhs.gov
64 Huff, Robert M., Michael V. Kline, and Darleen V. Peterson, eds. Health Promotion in Multicultural Populations: A Handbook for Practitioners and Students. Third edition. ed. Thousand Oaks: Sage, 2015, chapter 6.
65 Saha, S., M. C. Beach, and L. A. Cooper. "Patient Centeredness, Cultural Competence and Healthcare Quality." J Natl Med Assoc 100, no. 11 (2008): 1275‐85.
66 Durante, C. "Bioethics in a Pluralistic Society: Bioethical Methodology in Lieu of Moral Diversity." Med Health Care Philos 12, no. 1 (2009): 35‐47.
67 Huff, Robert M., Michael V. Kline, and Darleen V. Peterson, eds. Health Promotion in Multicultural Populations: A Handbook for Practitioners and Students. Third edition. ed. Thousand Oaks: Sage, 2015, chapter 181‐188.
201
68 Huff, Robert M., Michael V. Kline, and Darleen V. Peterson, eds. Health Promotion in Multicultural Populations: A Handbook for Practitioners and Students. Third edition. ed. Thousand Oaks: Sage, 2015, chapter 189‐199.
69 Tervalon, Melanie, and Jann Murray‐Garcia. "Cultural Humility Versus Cultural Competence: A Critical Distinction in Defining Physician Training Outcomes in Multicultural Education." J Health Care Poor Underserved 9, no. 2 (1998): 117‐25.
70 Carrillo, J. E., A. R. Green, and J. R. Betancourt. "Cross‐Cultural Primary Care: A Patient‐Based Approach." Ann Intern Med 130, no. 10 (1999): 829‐34.
71 United States Department of Health and Human Services, Office of Minority Health. "National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care: A Blueprint for Advancing and Sustaining Clas Policy and Practice." Washington, 2013: 14‐20.
72 Smedley, Brian D., Adrienne Y. Stith, and Alan R. Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington: The National Academies Press, 2002, 35‐38
73 Green, C. R., K. O. Anderson, T. A. Baker, L. C. Campbell, S. Decker, R. B. Fillingim, D. A. Kalauokalani, et al. "The Unequal Burden of Pain: Confronting Racial and Ethnic Disparities in Pain." Pain Med 4, no. 3 (2003): 277‐94.
74 Fiscella, K., P. Franks, M. R. Gold, and C. M. Clancy. "Inequality in Quality: Addressing Socioeconomic, Racial, and Ethnic Disparities in Health Care." JAMA 283, no. 19 (2000): 2579‐ 84.
75 LaVeist, T. A., D. Gaskin, and P. Richard. "The Economic Burden of Health Inequalities in the United States." 2009. 76 Brach, C., and I. Fraser. "Reducing Disparities through Culturally Competent Health Care: An Analysis of the Business Case." Qual Manag Health Care 10, no. 4 (2002): 15‐28.
77 Juckett, G. "Cross‐Cultural Medicine." Am Fam Physician 72, no. 11 (2005): 2267‐74. 78 Betancourt, Joseph R. "Improving Quality and Achieving Equity: The Role of Cultural Competence in Reducing Racial and Ethnic Disparities in Health Care." 2006.
79 Goode, Tawara D., M. Clare Dunne, and Suzanne M. Bronheim. "The Evidence Base for Cultural and Linguistic Competency in Health Care." 2006.
80 Lie, D. A., E. Lee‐Rey, A. Gomez, S. Bereknyei, and C. H. Braddock, 3rd. "Does Cultural Competency Training of Health Professionals Improve Patient Outcomes? A Systematic Review and Proposed Algorithm for Future Research." J Gen Intern Med 26, no. 3 (2011): 317‐25.
81 Smedley, Brian D., Adrienne Y. Stith, and Alan R. Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington: The National Academies Press, 2002:180‐181.
82 Durante, C. "Bioethics in a Pluralistic Society: Bioethical Methodology in Lieu of Moral Diversity." [In eng]. Med Health Care Philos 12, no. 1 (Mar 2009): 41‐47.
83 Fox, R. C., and J. P. Swazey. "Examining American Bioethics: Its Problems and Prospects." Camb Q Healthc Ethics 14, no. 4 (2005): 361‐73.
84 Légaré, France, and Holly O. Witteman. "Shared Decision Making: Examining Key Elements and Barriers to Adoption into Routine Clinical Practice." Health Affairs 32, no. 2 (Feb 2013): 276‐84.
85 Veroff, David, Amy Marr, and David E. Wennberg. "Enhanced Support for Shared Decision Making Reduced Costs of Care for Patients with Preference‐Sensitive Conditions." Health Affairs 32, no. 2 (Feb 2013): 285‐93.
86 Frosch, Dominick L., Suepattra G. May, Katharine A. S. Rendle, Caroline Tietbohl, and Glyn Elwyn. "Authoritarian Physicians and Patients' Fear of Being Labeled 'Difficult' among Key Obstacles to Shared Decision Making." Health Affairs 31, no. 5 (May 2012): 1030‐8.
87 Peek, Monica E., Shannon C. Wilson, Rita Gorawara‐bhat, Angela Odoms‐young, Michael T. Quinn, and Marshall H. Chin. "Barriers and Facilitators to Shared Decision‐Making among African‐Americans with Diabetes." Journal of General Internal Medicine 24, no. 10 (Oct 2009): 1135‐9.
88 Grande, Stuart W., Marie‐anne Durand, Elliott S. Fisher, and Glyn Elwyn. "Physicians as Part of the Solution? Community‐Based Participatory Research as a Way to Get Shared Decision Making into Practice." Journal of General Internal Medicine 29, no. 1 (Jan 2014): 219‐22.
89 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 1‐13
90 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 15‐17
91 Jonsen, Albert R., Marc Siegler, and William J. Winslade. 2015 (8th edition). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. New York: McGraw Hill Education: 51‐64.
92 Lo, Bernard. Resolving ethical dilemmas: a guide for clinicians: Lippincott Williams & Wilkins. 2013. 19‐26
202
93 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 168‐174 94 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 109‐112 95 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 53‐60 96 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 65‐70 97 Farber Post, Linda, Jeffrey Blustein, and Nancy Neveloff Dubler. Handbook for health care ethics committees. Baltimore: Johns
Hopkins University Press. 2015 (2nd edition). 46‐53 98 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 175‐185 99 Lo, Bernard. Resolving ethical dilemmas: a guide for clinicians: Lippincott Williams & Wilkins. 2013. 32‐39 100 Lo, Bernard. Resolving ethical dilemmas: a guide for clinicians: Lippincott Williams & Wilkins. 2013. 52‐59 101 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 18‐21 102 Jonsen, Albert R., Marc Siegler, and William J. Winslade. 2015 (8th edition). Clinical Ethics: A Practical Approach to Ethical
Decisions in Clinical Medicine. New York: McGraw Hill Education: 47‐50. 103 Lo, Bernard. Resolving ethical dilemmas: a guide for clinicians: Lippincott Williams & Wilkins. 2013. 77‐84 104 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 24‐26 105 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 32‐35 106 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 85‐90 107 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 27‐31 108 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 98‐99 109 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 94‐97 110 Lo, Bernard. Resolving ethical dilemmas: a guide for clinicians: Lippincott Williams & Wilkins. 2013. 77‐83 111 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 100‐106 112 Jonsen, Albert R., Marc Siegler, and William J. Winslade. 2015 (8th edition). Clinical Ethics: A Practical Approach to Ethical
Decisions in Clinical Medicine. New York: McGraw Hill Education: 65‐80. 113 Farber Post, Linda, Jeffrey Blustein, and Nancy Neveloff Dubler. Handbook for health care ethics committees. Baltimore: Johns
Hopkins University Press. 2015 (2nd edition). 17‐21 114 Jonsen, Albert R., Marc Siegler, and William J. Winslade. 2015 (8th edition). Clinical Ethics: A Practical Approach to Ethical
Decisions in Clinical Medicine. New York: McGraw Hill Education: 81‐89. 115 Lo, Bernard. Resolving ethical dilemmas: a guide for clinicians: Lippincott Williams & Wilkins. 2013. 90‐97 116 Farber Post, Linda, Jeffrey Blustein, and Nancy Neveloff Dubler. Handbook for health care ethics committees. Baltimore: Johns
Hopkins University Press. 2015 (2nd edition). 22‐26 117 Lo, Bernard. Resolving ethical dilemmas: a guide for clinicians: Lippincott Williams & Wilkins. 2013. 104‐107 118 Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd
Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library. 113‐115 119 Fisher, Jill A. "Expanding the Frame of "Voluntariness" in Informed Consent: Structural Coercion and the Power of Social and
Economic Context." Kennedy Institute of Ethics Journal 23, no. 4 (Dec 2013): 355‐79. 120 Williams, David R., Naomi Priest, and Norman B. Anderson. "Understanding Associations among Race, Socioeconomic Status,
and Health: Patterns and Prospects." Health Psychology 35, no. 4 (2016): 407‐11 5p. 121 Keegan, Theresa H. M., Allison W. Kurian, Kathleen Gali, Tao Li, Daphne Y. Lichtensztajn, Dawn L. Hershman, Laurel A. Habel,
Bette J. Caan, and Scarlett L. Gomez. "Research and Practice. Racial/Ethnic and Socioeconomic Differences in Short‐Term Breast Cancer Survival among Women in an Integrated Health System." American Journal of Public Health 105, no. 5 (2015): 938‐46.
122 Cundiff, Jenny M., Timothy W. Smith, Carolynne E. Baron, and Bert N. Uchino. "Hierarchy and Health: Physiological Effects of Interpersonal Experiences Associated with Socioeconomic Position." Health Psychology 35, no. 4 (2016): 356‐65 11p.
123 Farber Post, Linda, Jeffrey Blustein, and Nancy Neveloff Dubler. Handbook for health care ethics committees. Baltimore: Johns Hopkins University Press. 2015 (2nd edition). 33‐39
203
124 Lo, Bernard. Resolving ethical dilemmas: a guide for clinicians: Lippincott Williams & Wilkins. 2013. 130‐131 125 Schollgen, Ina, Oliver Huxhold, Benjamin Schuz, and Clemens Tesch‐Romer. "Resources for Health: Differential Effects of
Optimistic Self‐Beliefs and Social Support According to Socioeconomic Status." Health Psychology 30, no. 3 (2011): 326‐35 10p. 126 Molina, Kristine, and Yenisleidy Simon. "Everyday Discrimination and Chronic Health Conditions among Latinos: The
Moderating Role of Socioeconomic Position." Journal of Behavioral Medicine 37, no. 5 (2014): 868‐80 13p. 127 Calloway, S. J. "The Effect of Culture on Beliefs Related to Autonomy and Informed Consent." Journal of Cultural Diversity 16,
no. 2 (Summer 2009): 68‐70 3p. 128 Lakes, Kimberley D., Elaine Vaughan, Marissa Jones, Wylie Burke, Dean Baker, and James M. Swanson. "Diverse Perceptions of
the Informed Consent Process: Implications for the Recruitment and Participation of Diverse Communities in the National Children's Study." American Journal of Community Psychology 49, no. 1‐2 (Mar 2012): 215‐32.
129 Schenker, Yael, Frances Wang, Sarah Jane Selig, Rita Ng, and Alicia Fernandez. "The Impact of Language Barriers on Documentation of Informed Consent at a Hospital with on‐Site Interpreter Services." Journal of General Internal Medicine 22 (Nov 2007): 294‐9.
130 Hunt, Linda M., and Katherine B. de Voogd. "Are Good Intentions Good Enough?: Informed Consent without Trained Interpreters." Journal of General Internal Medicine 22, no. 5 (May 2007): 598‐605.
131 Perkins, Henry S. "Culture as a Useful Conceptual Tool in Clinical Ethics Consultation." Cambridge Quarterly of Healthcare Ethics 17, no. 2 (Apr 2008): 164‐72.
132 Jonsen, Albert R., Marc Siegler, and William J. Winslade. 2015 (8th edition). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. New York: McGraw Hill Education: 109‐111.
133 Jonsen, Albert R., Marc Siegler, and William J. Winslade. 2015 (8th edition). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. New York: McGraw Hill Education: 126‐132.
134 Solovieva, Tatiana I., and Richard T. Walls. "Barriers to Traumatic Brain Injury Services and Supports in Rural Setting." Journal of Rehabilitation 80, no. 4 (2014): 10‐18 9p.
135 Bader, Michael D. M., Marnie Purciel, Paulette Yousefzadeh, and Kathryn M. Neckerman. "Disparities in Neighborhood Food Environments: Implications of Measurement Strategies." Economic Geography 86, no. 4 (2010): 409‐30.
136 Roessler, Richard T., Malachy Bishop, Phillip D. Rumrill, Kathleen Sheppard‐Jones, Brittany Waletich, Veronica Umeasiegbu, and Lisa Bishop. "Specialized Housing and Transportation Needs of Adults with Multiple Sclerosis." Work 45, no. 2 (2013): 223‐35.
137 Beard, J. R., N. Tomaska, A. Earnest, R. Summerhayes, and G. Morgan. "Influence of Socioeconomic and Cultural Factors on Rural Health." Australian Journal of Rural Health 17, no. 1 (2009): 10‐15 6p.
138 Sagrestano, Lynda M., Joy Clay, Ruthbeth Finerman, Jennifer Gooch, and Melanie Rapino. "Transportation Vulnerability as a Barrier to Service Utilization for Hiv‐Positive Individuals." AIDS Care 26, no. 3 (2014): 314‐19 6p.
139 Mein Goh, Jie, Guodong Gao, and Ritu Agarwal. "The Creation of Social Value: Can an Online Health Community Reduce Rural–Urban Health Disparities?". MIS Quarterly 40, no. 1 (2016): 247‐63.
140 Smith, Lauren B. M. D., and Andrew D. O. M. P. H. Barnosky. "Web‐Based Clinical Ethics Consultation: A Model for Hospital‐Based Practice." Physician Executive 37, no. 6 (Nov/Dec 2011): 62‐4.
141 American College of Healthcare Executives. ACHE Code of Ethics. November 14, 2011. https://www.ache.org/abt_ache/code.cfm#organization
204
Chapter 5: Medical Futility and Rationing Health care resources are finite, yet demand for needed health resources are virtually unlimited.
This means that some people will not be afforded the resources for the care they need. In the
United States, the highly politicized, often ill-informed debate about health care rationing has
prevented proper critical analysis of health care resource distribution. With little guidance from
federal or state governments on health care resource allocation, health care delivery
organizations are left to determine how these limited resources can be distributed to patients in
an ethically sound and/or efficient way.
In the past, the basis for discourse surrounding health care delivery resource allocation
has focused on two key concepts: medical futility and rationing. These two key concepts will be
examined as background concepts for ethical resource allocation at the level of health care
delivery. Resource allocation will then be explained as a concept which transcends the existing
understandings of futility and rationing. Based on obligations to protect and promote the human
right to quality health care, health care organizations have an obligation to develop ethically
sound ways to distribute their limited resources. These decisions should be founded in justice,
and should not be influenced by non-medically relevant patient characteristics such as race,
ethnicity, culture, socioeconomic status and geographical proximity to health care providers.
5a Medical Futility
Futile medical care can be defined as a treatment or medical intervention where there is no
benefit, or where the amount of benefit achieved is judged as not worth its costs. When
unpacking this broad definition, however, flaws with applications for the medical futility concept
emerge. Ambiguity remains in terms of which expected outcomes are relevant and how likely
those outcomes are to occur. This can lead to drastic differences in opinion among stakeholders
205
making assessments based on different assumptions of risk and outcomes. In addition, the
acceptable probability threshold for achieving the patient’s goals has not met consensus. These
factors can lead to equity violations when medical futility disagreements are influenced by bias,
especially when these biases are related to social determinants of health. Opinions of futility are
susceptible to opinions on whether specific patients are worth of a perceived high-cost, low-
benefit treatment. When these judgements are made based on any non-medically relevant
criteria, they unjustified and in violation of the right to quality health care.
5 ai Defining Medical Futility
The purpose of medical futility assessment is to determine the probability of achieving desired
outcomes from a medical intervention, then possibly limiting or eliminating the intervention
based on this assessment. While the virtue of this type of assessment may be rational on some
level, there are many arguments against the use of medical futility as assessment criteria for
patient interventions. First and foremost, there is no established normative criteria or threshold to
determine how to limit treatment for the critically ill or to determine medical futility.1 With no
normative criteria or commonly accepted guidelines for judging where medical care reaches the
level of futility, variation and ethical concerns of bias are introduced into this concept.
While specific normative criteria has not been established for medical futility assessment,
relevant ethical principles have been identified. These principles include the equivalence of
withholding and withdrawing life support, the difference between killing and letting someone
die, the distinction of medication intention to hasten death versus palliate, and the ethics of care
or requirement to not only treat for longevity, but also alleviate the suffering of patients and
families.2 Clarifying these principles may assist in medical futility assessment, although thus far
206
they have not been enough to develop a commonly accepted normative criteria for medical
futility.
Since there are no commonly accepted guidelines for determining medical futility, the
U.S. federal government has not instituted policy to support decision-making or how to manage
resources when treatment may be futile. Institutional policy developed within the health care
delivery organization is thus left to guide this decision making both systematically and at the
bedside on a case-by-case basis. Specifically, institutional policy should be put in place to
support clear communication, protecting both patient and professional autonomy and addressing
the emotional obstacles of medical decision-making.3 Incorporating communication and
organizational culture that facilitates the patient-physician relationship should be at the core of
this institutional policy and have special expediency when limited resources are involved. For
example, blood products are a valuable resource that should be used judiciously and only when
there is a clear connection to achieving the goals medicine.4 Institutional policy that guides
evidence-based decision-making and communication between providers and patients about blood
products can be put in place to protect this limited resource. Additionally, institutional policy can
support providers and patients to make shared decisions when the decision does not fit into the
mold of the general policy. Institutional policy can address conflicts in decision-making that
arise between patient autonomy and the authority of clinical experts by providing rules for the
decision-making process governing a range of situations and promoting shared decision-
making.5 This policy should focus on the roles of the patient or surrogate, the provider, and the
ethics committee.
207
The Role of the Patient or Surrogate
The role of the patient or surrogate is to provide the values and goals related to the treatment
option. When it appears that a treatment may be deemed "medically futile," the provider and
patient (or surrogate) will discuss options based on the patient’s values and preferences. These
options should allow for consideration of the patient’s values, priorities, life philosophy and
background, which can significantly influence their decision-making process.6 The provider
should enourage this shared decision-making that includes the patient’s values and goals.
To engage in this decision-making process, the patient must first understand the key
variables for an informed decision. The patient must then take this understanding and relate it to
their values, beliefs and goals with relevance to the decision. Patient education is an essential
component of this informed decision-making, and can be aided by decision-making tools as well
as the provider’s awareness of personal views and biases.7 A patient must be informed of all
information relevant to the decision without bias. Institutional policy should be developed to
facilitate this patient education and encourage shared decision-making. This type of shared
decision-making may also be called "personalized patient activation and empowerment," which
can be used to aid with decision-making through involvement of health care providers, the
community and the delivery system to provide knowledge, self-determination and confidence to
patient decision-making to improve health and reduce health disparities.8 The patient must be
empowered with an understanding of how all relevant information relates to their values and
goals in order to self-determine. Only through an understanding of this relationship between
goals and relevant clinical information can an assessment of medical futility even begin to form.
208
Institutional policy to support this shared decision-making and patient education is
especially important to overcome barriers to physician-patient communication. One of the major
barriers of this communication involves the power dynamic between physicians and patients.
The dynamic between patient autonomy and physician authority can create challenges for
identifying appropriate treatment and a shared understanding of prognosis.9 Although this
challenge prevails within most health care delivery organizations, it can be overcome through
organizational interventions. For example, the communication conflicts created by the power
imbalance between the doctor and the patient can be systematically addressed by using a
decision-making matrix including the initial state, the defined intervention, the defined goal of
treatment over time, how much gain there will be in net benefit for each treatment, and a
declaration of the defined goal in relation to the intervention.10 Frameworks and tools for
decision-making, developed and implemented at the level of the delivery system, can begin to
address the barriers to physician-patient communication and decision-making related to medical
futility. Also, these decision-making tools should account for the complicated relationship
between autonomy and well-being. Due to a lack of stable preferences and/or decision-making
biases, patients do not always make decisions in their best interests.11 Decision-making and
communication tools should incorporate ways to address this potential conflict between
respecting a patient’s autonomy and supporting their well-being.
The involvement of family and surrogate decision-makers should also be included in
these organizational models, frameworks and policy for shared decision-making. Some patients
may value family involvement and input in decisions about whether care is futile in relation to
their goals of care. In some cases, relational autonomy – rather than traditional autonomy models
– may be appropriate when patients value family involvement in decision-making.12
209
Incorporating the potential for varying patient perspectives in medical decision-making will be
essential for ethical organizational policy formation and implementation related to medical
futility. In addition, the role of surrogates must be addressed for ethical decision-making related
to medical futility. Surrogates decision-making is difficult and unique since the surrogate is
presuming what the patient would have wanted, or what would be best for the patient. In
addition, surrogates tend to have overly optimistic expectations and there can be barriers to
quality end-of-life care - such as more invasive treatments and delayed palliative care integration
– when surrogates midjudge prognosis of the patient.13 Providers need the ability to work with
surrogates and facilitate their unique informed decision-making process. Importantly, providers
should help surrogates separate their own beliefs versus the values and beliefs that the patient
would have in the present situation. For example, religious influences can not only impact a
patient’s medical decision-making, but surrogates also often invoke their own religious beliefs
related to the value of life, religious coping and support, and guidance of their religious
community.14 Organizational policy should support this and other unique aspects of surrogate
decision-making. Overall, physicians may be able to better understand patients and surrogates,
including how they make medical decisions, by discussion religious and spiritual ideas of the
patient and their family.15 Physicians need the tools and support from the health care delivery
organization to understand and address these needs.
The Role of the Health Care Provider
In medical futility assessments, the role of the health care provider is to clarify the goals of care,
give patients and families time to comprehend the diagnosis and options, and facilitate patient
and family expressions of understanding. The health care provider must accomplish this while
demonstrating professional integrity, incorporating professional norms and standards into
210
communication and the shared decision-making process. In cases of medical futility, physicians
should assess whether all reasonable options have been attempted and establish guidelines plus
limits for interventions in place. To accomplish this, physicians need to understand the limits of
medical care and their own power. In addition, physicians should avoid offering medically
inappropriate options while also addressing the emotional needs of patients.
Health care providers can face many challenges when assessing and communicating
about medical futility. Challenges to discussions and determinations about nonbeneficial include
differences in prognostic estimates, inadequate data about quality of life, unprepared patients,
variation in perception of the role of palliative care, inconsistency in weighing patient goals, and
time constraints.16 The uncertainties of these decisions creates major barriers to effectively
assessing and communicating about potentially medically futile care. The uncertainty inherent to
medicine can affect both quantitative and qualitative assessments of treatment benefits.17 This
uncertainty can affect quantitative risk assessments as well as quality of life predictions for the
patient. This uncertainty is the crux of ethical dilemmas related to medical futility.
Some health care providers are better at assessing and predicting patient benefits of care
than others. With more experience, physicians can make better decisions about treatment
appropriateness and engage in better communication for decision-making.18 More experienced
physicians tend to make better decisions when faced with uncertainties and complexities than
those who have less experience. Physician trainees can experience moral distress when asked to
provide treatments that they believe to be futile which can lead to decreased job satisfaction,
feelings of powerlessness, compromised well-being, burnout, and thoughts of quitting.19 Those
who experience internal ethical conflict and self-doubt over medical futility assessments can
experience negative consequences for themselves as providers. It is important for leaders of
211
health care delivery organizations to recognize this and address barriers and challenges to
decision-making faced by junior or trainee health care providers.
In addition, health care delivery organization policy, leadership and culture should
facilitate healthy responses to the uncertainty of medicine. Physicians should learn to recognize
and tolerate uncertainty and avoid overconfidence to improve the quality of information they
provide to patients and promote informed decisions.20 In respect to patient autonomy and
informed consent, patients should know the level of certainty of various potential outcomes of
treatment or non-treatment. If there is uncertainty or lack of evidence, the physician should use
professional judgement to facilitate shared decision-making emphasizing patient autonomy.21
Patients should be able to consider all relevant information to decision-making, including
probabilities or uncertainties of an outcome occurring.
While providers are not obligated to offer non-beneficial treatment to patients,
they should always offer some option to care for the patient. In many cases the best option for
patient care may be palliative care. Providers who deny non-beneficial treatment should still
provide palliative care as an alternative and give the patient the opportunity to contact other
practitioner or institution.22 Provider transparency as to what treatment options are available,
their probability, the level of uncertainty in outcomes, and what may be offered by other
providers is all part of the ethical respect for patient autonomy and respect for a patient’s
personal integrity. In addition, physicians should have a commitment to trustworthiness, showing
attitudes and behaviors that gain the patient and family’s trust.23 The relationship that the
physician cultivates with the patient is essential for smooth and morally sound shared decision-
making about a patient’s care. Health care delivery organizations can help to facilitate this
decision-making by creating an organizational culture and policy that supports transparent,
212
compassionate, and respectful communication between the provider and the patient. Patient-
physician interaction can be improved through more open communication and a mutual
recognition of topics where there is no clear and present expert on the matter.24 Health care
delivery organizations can help physicians to recognize topics and situations where there may be
a high level of uncertainty. In addition, organizations can help physicians to develop cultural
competency and understanding of potentially diverse patient perspectives on medical decision-
making. This can help the provider to understand the patient’s values and goals of treatment. For
example, an understanding of patients’ and families’ religious beliefs can help a physician to
better understand the patient perspective, including their values and preferences.25 The provider
should recognize the diverse perspectives and experiences of the patient that will affect their
goals of care, and thus help determine whether a treatment option is futile in terms of the
patient’s goals. In addition, the provider should use introspection to analyze how their own
background, values and biases may affect decision-making with the patients. In other words, a
physician should consider their personal views versus professional norms.26 A physician should
understand which opinions on the best course of action for the patient come from their own,
potentially biased, beliefs versus evidence-based medical management and professional values.
Organizational policy and provider decision-making can use approaches and innovations
of patient-centered care to achieve effective shared decision-making. Health care delivery
organizations have a significant role in facilitating these interactions since patient-centered care
innovations depend on leadership development, incentives for experimentation, and cooperation
between delivery systems, health plans and policymakers.27 This leadership development and
cooperation will depend on programs and policies at the health care delivery organization. This
is especially important in the United States as the population continues to become increasingly
213
diverse, creating serious challenges for health care administrative leaders and providers. Because
of this, health care organizational policy needs to balance of homogenization (building common
ground) and customization (addressing individual uniqueness) to adequately address diverse
patient populations.28 In addition, recognizing this common ground as well as the unique needs
of patients will be essential for conflict resolution in medical decision-making. When
disagreement occurs between a provider and patient, or any stakeholders in the patient’s care,
other support may be needed to make an ethically sound conclusion to address the uncertainty.
Decisions about medically futile care should not be unilateral and instead be based on a
foundation of rapport and trust between the physical and patient with mediation from outsiders
such as ethics committees when needed.29 Even provider-patient communication is effective and
the patient’s autonomy is fully respected, there still may be disagreement or conflict between the
provider and patient.
Institutional policy and provider decision-making may also consider the costs of futile
care toward other patients that they serve. Providing futile care - or care to prolong life without
achieving meaningful benefit to the patient - is associated with delays in care to other patients.30
Therefore, balancing the spread of resources is an associated outcome of medical futility
assessment. When resources are used to give treatments not aligned with the patient’s goals of
care, other patients who would benefit from the treatment may lose out on the resource. Medical
futility may then be useful as a starting point or foundational concept for a resource allocation
framework to emerge.
aii Social Determinants of Health - Bias & Influence on Futility Assessments Social determinates of health can further complicate the ethical application of medical futility
concepts, especially if related bias is introduced into medical futility assessment. Justice should
214
form the foundation for ethical futility assessment to prevent undue bias from influencing
futility-related decisions. When conflict arises in futility assessment, ethics committees can
mediate problems at the beside. Ethics committees can also preemptively identify potential
biases through the development of ethically sound organizational policy related to medical
futility assessment.
Justice
Justice in terms of modern ethical discourse, is "the moral principle that relates to proper
'balance' or allotment among persons of groups.”31 Justice then explains how to incorporate
fairness into resource allocation within health care organizations. Justice creates a foundation for
ethical distributions of benefits and burdens.32 Incorporating solidarity into justice-based analysis
of organizational policy can help to elucidates key concepts related to fairness in health care.
Solidarity can provide important relational aspects that can complement rights-based justice
approaches to health care by promoting a sense of belonging, recognition, reciprocity and
support.33 Solidarity supports justice, and justice supports the human right to health. The right to
health includes the right to pursue flourishing where one can make sense of oneself and one’s
own identity including one’s past, present, and future, and the ability to act in accord with one's
own nature.34 This includes the rights of all persons, regardless of their culture, religion,
ethnicity, race, gender, or age. All persons have a right to justice in support of the human right to
quality health care.
In practice, this right can be difficult to carry out when policy leaders and health care
providers hold personal biases. Even physicians face limitations in decision-making that may be
influenced by either implicit or explicit bias. Limitations of cognitive capacity can lead
physicians to make systematic errors in judgement, such as estimation of subjective, rather than
215
statistical, probabilities related to diagnostic decision-making, based on a patient’s belonging to a
minority group.35 These limitations can place unjust burden on marginalized individuals who are
the subject of this biased decision-making. A health care professional has the same level of
implicit bias as the general population which can impact the clinician-patient interaction and lead
to biased treatment, level of care, and diagnosis decisions.36 When bias is introduced during the
clinician-patient interaction, there is a potential for serious, negative consequences for
marginalized individuals and groups. Racism, ageism, and sexism are just a few examples of
how this bias can manifest into unjust treatment of patients.
Structural racism can have a serious negative impact on health outcomes for those
afflicted. Structural racism is manifested in economic injustice and social deprivation,
environmental and occupational inequalities, psychosocial trauma, targeted marketing of health-
harming substances, inadequate health care, state-sanctioned violence and alienation from
property and traditional lands, political exclusion, maladaptive coping behaviors and stereotype
threats.37 This means that, even beyond the physician-patient interaction, patients face
discrimination and bias that can put them behind in terms of health outcomes. For example,
structural racism, especially that which results from inequalities in education, professional
opportunity, and income, is correlated with an African-American infant mortality rate that is
double than that of white Americans.38 There are a litany of negative outcomes like this that are
the result of this structural racism. When making decisions about medical care, and especially
about futility of care, providers and organizational policy should ensure that structural racism is
not causing unjust harm toward minority patients.
Ageism is another way in which bias may manifest itself in medical decision-making.
Ageism involves bigotry and discrimination from one age group to another, and is embedded in
216
social cognition and prejudice in a variety of fields – including health care.39 Ageism has many
implications for health care decision-making. Ageism can impact autonomy in health care
decision-making, especially in terms of its impact on an individual’s self relations, including
one’s self-worth, self-esteem and self-trust.40 A patient may internalize ageism when facing
systematic unfair treatment. This can ultimately affect the patient’s capacity to make autonomous
decisions and participate in shared decision-making.
Gender is another area where bias may occur in medical decision-making. Gender
inequality exists in health care access, where there is a gender bias that negatively impacts
females in both clinical practice and research.41 This demonstrates that root of bias can go even
deeper than bedside interactions and result from structural inequalities such as unbiased inclusion
in medical research.
Provider bias does not always have to be based on demographics, and can also be based
on certain clinical conditions. For example, negative attitudes held toward overweight and obese
patients include blaming the patient for their weight, disrespectful treatment, inappropriate
treatment and, in health care, can lead to less empathetic communication from providers.42 This
type of bias toward overweight patients can lead to negative health consequences for patients and
create barriers to effective shared decision-making.
These types of bias and discrimination - racism, ageism, sexism and others - can act
independently but also can be compounded when a patient falls into multiple marginalized
groups. Bias can also be intersectional, where multiple patient factors impact the bias of a health
care provider. For example, gendered racism and its related microaggressions can negatively
impact the mental and physical health outcomes of black women.43 This and other types of bias
and discrimination can be either conscious or unconscious.
217
Health care delivery organizations can create policies that address both conscious and
unconscious biases. Health disparities that result from implicit bias of providers can be mitigated
by experience and expertise.44 Institutional policy that promotes experience and knowledge about
treating marginalized groups can help to mitigate implicit bias. Explicit bias can be addressed
more directly through training and management techniques. Provider education should focus on
self-awareness of cognitive, emotional end ethical responses to uncertainty and using decision
aids or diagnostic guidelines to assist with decision-making.45 Creating a systematic framework
and tools for decision-making can reduce or eliminate bias by creating a fair process for all
patients.
Leaders of health care delivery organizations should use caution, however, when
removing too much physician autonomy in decision-making. Bias can also occur when
physicians over-rely on clinical decision-support. This type of bias can lead to omission when
clinicians do not find errors when they do not receive an alert and commission bias when
clinicians do not verify the veracity of an alert before acting.46 Organizational policy should
focus on making ethical decision-making easy and create barriers to biased, unethical decision-
making. Removing bias from decision-making related to futility assessment is especially
imperative due to the potential for grave, life-or-death consequences in medical futility cases.
Bias or unequitable treatment related to medical futility decisions opens the possibility for gross
injustice.
The Role of Ethics Committees
Ethics consultation developed as the complexity of modern medicine advanced, including the
development of organ replacement therapy and life-prolonging measures in the ICU, due to the
need for shared responsibility for difficult decisions, support for physicians, and difficulty in
218
bedside decision-making.47 The ethical complexity of modern medicine has created a need for
ethics committee intervention on both bedside and policy decision-making.
The roles and obligations of ethicists and ethics committees include creating and updating
organizational code of ethics, enforcing professional conduct, anticipating and addressing ethical
issues from scientific developments, contributing to public discourse, conducting ethics research,
producing or contributing to policy statements of the organization, and providing education and
training.48 Ethics committees can identify biases related to social determinants of health when
facilitating medical futility discussions by focusing the ethical dimensions and clinically relevant
information of the decision-making process. Ethics committees also play a crucial role in clinical
guideline development, policy advisement, and case review.
Ethics committees should be trained in identifying both explicit and unspoken, implicit
bias in health care decision-making. Including representation from marginalized groups could
help to alleviate distrust of the decision-making process, as well as improve understanding of the
burdens and benefits that each unique patient may be facing.49 Eliminating unfair decision-
making bias at both the organizational policy level and at the bedside is a crucial role of the
ethics committee.
Ethics committees should also be versed in resource scarcity and the balance between
individual and population health outcomes. Ethics committees can help providers to focus on the
long-term risks of a procedure, including potential psychosocial conditions, and guide the
provider and patient to comprehend the suffering and the dying process. This can be
accomplished through either an individual consult or committee consultation. Individual ethics
consultation may afford better greater of access, speed, flexibility, convenience, and trust
building, while ethics committee consultation can offer diverse perspectives, multiple approaches
219
and opinions, enriched ethical deliberation, and complementary qualifications.50 Depending on
the situation and decision support needed, either of these approaches could alleviate the ethical
concerns presented by an ethically ambiguous case. In either case, the role of ethics consultation
is to mediate the process of decision-making. Physicians may tend to expect help with moral
distress, avoiding legal consequences, and mediation rather than prescriptive solutions from
ethics committees.51 Rather than offering a conclusive solution, the ethics consultation can assist
the provider and patient in communication and in the understanding of ethically relevant
information for the decision.
Ethics committees must also navigate through multidisciplinary interactions that may
complicate the decision-making process. Different care providers may interact with ethics
committees differently, so ethics committees should consider the nuances of multidisciplinary
interactions within the care team to improve structured support for the decision-making
process.52 The ethics committee can facilitate understanding not only between provider and
patient but between different types of care providers and provider of differing disciplines. In
addition, ethics committees may create stronger relationships with providers by providing
support to their personal struggles with ethical decision-making. Ethics Committees can engage
in moral distress consultation when healthcare professionals are feeling loss of power and
perception of compromising their own moral integrity.53 This can help to build a relationship of
trust and understanding between health care providers and ethics committees.
Ultimately, the ethics committee can help to facilitate both policy and individual
consultation that emphasizes medically relevant information in decision-making and addresses
the potential for both explicit and implicit bias in decision-making.
220
5b Resource Allocation versus Rationing in Health Care
Medical futility is often incorporated into the health care resource allocation assessment when
expensive, non-beneficial interventions create high costs to the health care system. Using
resources on non-beneficial treatment means that the same resource is not available for another
patient who may benefit. When applied through a lens respect for human vulnerability and social
responsibility and when carried out through ethically sound policies and processes, the
incorporation of medical futility assessment to health care resource allocation can be justified.
This must be differentiated than health care rationing, however, since rationing relies on
potentially unjust, inadaptable criteria for determining who gets critical health care resources. A
systematic organizational resource allocation framework, however, could adapt to specific
patient situations and patient characteristics (including social determinants of health.)
Importantly, ethical resource allocation includes considerations for quality of care, patient safety,
cultural competence, and shared decision-making. With quality care equitably maximized,
human rights will be protected and health care delivery will be ethically grounded.
5bi Rationing
Rationing is based on specific patient characteristics, or group characteristics of patients
that are in similar situations. This type of rationing can only be justified when applied to very
specific situations in very specific contexts, while overarching judgements applied across types
of care are impossible to uniformly justify.
Justifications for Rationing in Health Care
Due to the reality of limited health care resources, justification for systematic rationing of
health care has been attempted, albeit in ways that have been strongly contested. Models for
rationing care have been developed based on age, disease, treatment, waste, autonomy,
221
effectiveness, personal responsibility, personal choice, individual behavior and luck but none
have reached any overarching agreement.54 Arguments have been made for these and other
criteria with little if any movement toward consensus on how to ration in the United States. For
example, age has been used justify rationing in health care, such as the fair innings distributive
principle based on age, with a central focus on maximizing life years.55 Though arguments have
been made for this approach to rationing, policy in the U.S. has not embraced rationing by age.
Other examples of approaches to rationing have similarly lacked consensus in the United States.
Rationing can occur both at the policy level and at the bedside. Some specific examples
of rationing have been embraced in very specific contexts, although an overarching approach to
rationing remains elusive. An example of a context-specific approach to rationing is the
management of antimicrobial therapy. Antimicrobial therapy is a beneficial treatment that can be
held from an ICU patient in order to protect the outcome of the critically ill population in
general.56 This is an example of rationing that has been accepted in the United States in a very
specific context.
A major ethical conflict of rationing is the ethical obligation to the individual patient
versus the patient population. Physicians may feel conflict between their fidelity to their
individual patient and responsibility toward patients apart from their immediate experience,
especially when the chance of a good outcome for their patient is unreasonably small compared
to their chance of prolonged suffering and death.57 Physicians face distress when making these
decisions on an individual basis, rather than within the context of policy and structure to support
ethical resource allocation.
Delimitation between rationing and ethical resource allocation can be a fine line when
facing certain rationing criteria. The difference between ethical resource allocation and unethical
222
rationing is related to the rationing approach. An example of this fine line is risk and clinical
benefit in resource allocation decisions. This type of resource allocation approach would result in
decisions such as refusing elective surgeries for patients who smoke or are obese due to evidence
that connects these factors with perioperative complications.58 While similar to rationing, this
approach is not fully aligned with traditional rationing as it incorporates the benefit of the patient
who is being denied the treatment. When a patient will have a worse outcome based on a
behavioral issue that they are able to change, the benefit of withholding treatment until the
behavioral issue is fixed can be a justified reason for treatment delay. A secondary benefit to this
type of decision would be to re-allocate resources to patients who would have a greater
immediate benefit. Once the patient with the behavioral barrier to treatment addresses their
behavioral issue, they will receive the benefit. This speaks to prioritizing resources, or ethical
resource allocation, versus rationing resources.
Another ethical concern with rationing is the use of rationing when there remains a large
amount of inefficiency and waste in the health care system. When resources are being wasted on
non-beneficial care, it is difficult to justify rationing beneficial care. This means that an ethical
approach to the rationing debate may include parallel efforts to address inefficiencies in health
care delivery.59 Waste avoidance gets more to the point of resource allocation, where attempts
are made to avoid using resources that do not add value.
Rationing has been justified for reasons of limited resources in the U.S. healthcare system
at the level of health care delivery. It has been argued that specific criteria should be used to
facilitate a rationing process in the United States.
223
The Rationing Process
Health care rationing has been strongly debated and contested in the United States. This
includes approaches to explicit rationing through deterrence, deflection, distraction, dilution,
delay, or denial of services.60 Explicit rationing has been attempted based on varying criteria
with no consensus. For example, it has been argued that age could be used to explicitly ration
health care in the United States. The major concern with this type of rationing is that older
patients may be discriminated against and all of the patient’s clinically significant characteristics
may not be considered.61 Although the explicit and rigid criteria of patient age may not be
justified, it may make sense to incorporate functional abilities into resource allocation decisions
when demand for nursing care for complex, older patients exceeds supply of nursing resources.62
The distinction here, however, must be made for the ethical resource allocation process through
the systematic prioritization of limited resources available to a health care delivery organization.
Organizations understand the nuances of limited resources at their disposal and the needs of the
patient populations. For example, the differences across specialties may require specialty-based
allocation strategies to be used.63 The process for how this allocation is developed and
implemented will be the difference in whether the result is ethically sound or not.
Attempts at rationing are often made to address costs to the health care system but are
often short-sighted. Allocation of resources should not only address whom the system can afford
to treat now, but whom the system cannot afford to treat considering long term costs for short
term gains.64 When patient are excluded from resource allocation based on short-term gains, the
entire system suffers both in terms of patient care and health care costs.
The rationing processes that have received the most negative backlash have been attempts
to explicitly ration health care resources. Explicit rationing occurs when specific and clear
224
parameters are set to allocate treatments or services while implicit rationing occurs without a
formalized structure and is susceptible to personal biases.65 Implicit rationing is relatively hidden
compared to explicit rationing, so it tends to receive less publicity and backlash than explicit
rationing.
On the other hand, implicit rationing can slip under the radar and may not even be
conscious decisions by those who are implicitly allocating the limited resources. Although it may
not receive as much attention, implicit rationing may create more problems than explicit
rationing since no systematic attempt at ethical justification has been made for the decision. In
addition, staff and providers can face moral distress when left to implicitly ration at the bedside.
Nurses can face role conflict, feelings of guilt, and distress when they are face moral challenges
of prioritizing at the bedside.66 Physicians can also face these and other challenges when left to
implicitly ration. Physicians may implicitly or subconsciously ration by proxy when they are
deterred from patient care by paperwork burden and excessive prior authorization
requirements.67 This results in rationing of care, yet rationing that is not transparent or available
for public scrutiny.
Both implicit and explicit rationing may incorporate varying situational factors. This may
include potential length of life and quality of life, or broad well-being and happiness in addition
to life years.68 These may be part of an ethical justification for some forms of resource allocation
processes; However, when used as either uniform criteria for all patients or when decided by
opinion on an unstructured case-by-case basis, affronts to patient justice may occur. If explicit
rationing criteria is too rigid, for example, patients who have unique needs can be overlooked. If
left to opinion-based implicit rationing by individuals, however, individual bias can be
introduced to the decision-making process, contributing to unjust health disparities. This
225
demonstrates how both explicit and implicit rationing are problematic and lack ethical
justification.
Systematic allocation of resources is important, but health care rationing – either explicit
or implicit – is seriously morally flawed. In addition, the term “rationing” is politically and
emotionally charged, making productive discussions about resource allocation in terms of
“rationing” difficult to impossible. Attempts to address allocation of resources should move
away from the language of rationing to create more productive debate. However, linguistic
changes in the naming of rationing are not justified when they are superficial and only serve to
hide social visibility, avoid painful social conversations and avert ethical scrutiny.69 Discussing
resource allocation at the point of health care delivery must have meaningful differences from
existing debate on health care rationing. There is a need for an ethically justified approach to
health care resource allocation.
5bii Ethical Resource Allocation
While health care rationing based on uniform criteria of patient characteristics is unethical, it is
possible to carry out ethical resource allocation. Ethical resource allocation is based on a
foundation of goals and tolerable costs to the patient and should be organized through a
framework for organizational policy.
Goals and Tolerable Costs
Ethical resource allocation should be founded in patient goals and tolerable costs. Goals
and tolerable costs should be the starting point for making decisions in health care’s resource-
limited settings. This includes but is not limited to cases of medical futility.
226
A patient’s goals can be identified and defined in terms of the treatment process through
shared decision-making and the informed consent process. While the informed consent process is
useful, it still faces many challenges, including unknown or disputed risks for serious harm, and
determining when this type of controversial risk is serious enough to disclose.70 These challenges
should be addressed through shared decision-making facilitated by the mutual trust developed
through shared decision-making. When determining goals and tolerable costs of individual
patients, the informed consent process combined with shared decision-making can identify
whether the patient’s goals are aligned with treatment benefits and risks, even those which may
be uncertain. The shared decision-making process allows for the provider to determine which
benefits and risks may be most relevant to share with the patient based on their goals. This is an
essential component of identifying goals and tolerable costs, especially when assessing medical
treatments that may be new or innovative. While medical innovation is generally considered to
be positive for patient care, it can complicate informed consent and medical decision-making.
For example, surgical innovation such as new devices, technology, procedures, or applications
may have the potential to be either beneficial, ineffective, but foregoing new innovations could
also harm the patient by foregoing possible benefits of the novel treatment.71 Sharing new
innovations as potential treatment options should depend on the patient’s expressed goals, as
well as the patient’s values, especially values related to the patient’s weight of risks and benefits.
Providers must have the communication skills to help patients navigate the assessment of
benefits and risks of treatment. Patients have varying backgrounds, perspectives and values that
may influence decision-making so providers must understand and include these individual
patient characteristics in patient communication. Importantly, the hope for survival or need for
concrete action could create cognitive disorientation during decision-making, so providers need
227
to navigate between hope and realism.72 Providers must be realistic in estimation of potential
treatment benefit and frame benefits versus risk in a way that patients can understand and assess
compared to their values and goals. When discussing treatment options, providers should also
consider existential dimensions of patient communication such as evasive maneuvers, the
presence of powerful emotions, and attempts to avoid conversations about dying or functional
decline before death.73 Patients may be coping with their disease and the difficult medical
decision-making process through counterproductive, possibly non-conscious responses.
Providers should recognize and address these potential barriers to effective communication with
patients. For example, when prescribing or deprescribing medications, a physician should
consider the patient’s individual therapeutic goals, benefits and risks, the needs of the patients
related to cure versus minimizing functional impairment, patient age and frailty, and the adverse
effects or potential for significant harm from a medication.74 Different patients have differing
needs and benefits versus risks may be weighed differently based on the patient’s goals and
values. Health care delivery organizations can facilitate this decision-making through policy and
an ethical resource allocation framework to support shared decision-making between physicians
and patients.
In addition, ethical resource allocation will include a multidisciplinary approach to
meeting patient’s goals of care. For example, hospice may be the best option to meet the goals of
care for some patients. Hospice services are multidisciplinary and incorporate physicians, nurses,
clergy, social workers, volunteer caretakers, family members, and payers that provide monetary
and business incentives for hospice referrals.75 The multidisciplinary approach to hospice and
other patient-centered approaches to care means that the health care delivery organization plays a
crucial role in coordinating and incentivizing team-based approaches to patient care.
228
Organizational policy should also support goals of care discussions through support of
patient-centered care. These goals of care discussions can include both short term outcomes -
such as mortality and morbidity, and long-term outcomes - such as disability, worsening quality
of life, and loss of functional capacity.76 Discussing goals of care with patients will help to
determine what is important them and to prioritize interventions that are aligned with their values
and preferences. Goals of care discussions can follow a four-step patient-centered process that
includes establishing a diagnosis, discussing prognosis, defining goals of care and making
decisions about treatment.77 This will help patients to understand the severity of their illness and
then align their values with the options available for treatment.
Goals of care discussions should be documented for clarity and accountability. Routine
goals of care documentation can help to promote better communication, partnership and clinical
decision-making with patients.78 Documentation of goals of care discussions can create better
interdisciplinary communication, and create accountability for physicians to incorporate a
patient’s goals of care into care planning. Importantly, improved documentation of goals of care,
such as advance care planning for patients with terminal cancer, can improve quality of care.79
Documentation of goals of care incorporates the patient’s values and preferences into the official
care planning process and ensures that the outcomes that are important the patient are prioritized.
Goals of care discussions are essential for effective patient-centered care, but can create
some challenges to providers of care as well as overall policy development for the organization
and health care system. Potential challenges or special considerations for goals of care
discussions include cultural differences, patients who lack decision-making capacity, and the role
of medical technology.80 These challenges do not stop at the level of the physician-provider
interaction. Goals of care interventions create challenges at the individual, organizational and
229
systems levels.81 The provider faces challenges with the patient interaction, and the organization
and systems levels face challenges in providing the necessary support for these discussions and
documentation to take place. Goals of care discussions require adequate team structures, training
and resources for initiating conversations.82 Health care delivery organizations and health care
delivery systems must provide this support for goals of care to be effectively incorporated into
patient care plans. This is a worthwhile approach because goals of care communication can
improve end of life quality for patients, including palliative care plans.83 When patients are
facing difficult clinical decisions, especially during the end of life, goals of care discussions and
documentations can clarify the best course of action for the patient according to their values and
preferences.
Patient goals begin the process of ethical resource allocation, then tolerable costs must be
incorporated to balance decision-making that is in the patient’s best interests. Health care
organizations can help providers to assess tolerable costs by facilitating effective risk assessment
of patients using both personal risk and comparative risk to show patients big picture of their
personal risk and help with interpretation of options and decision making.84 When facilitating
autonomous patient decision-making, tolerable risks and costs to the patient are equally as
important as the probability of meeting a patient’s defined goals. When the costs outweigh the
benefits to the patient, it will not make sense to provide that treatment to the patient. This is the
natural beginning to ethical resource allocation. Ethical resource allocation should first and
foremost begin with aligning beneficial treatments with patient goals and tolerable risks.
Tensions between administrators and physicians can occur when cost-saving measures
appear to conflict with physician autonomy. This can be addressed by increasing physician
leadership and creating a collaborative atmosphere between administrators and providers of
230
care.85 Including physicians on the leadership team help to alleviate communication barriers and
tensions with the clinical providers and staff within the organization.
Tolerable cost assessments should include financial outcomes, quality of life factors,
social justice and organizational ethics.86 This means that the tolerable cost assessment of
providing a treatment should not only consider the individual patient’s tolerable financial costs
and quality of life factors of treatment, but also social justice and organizational ethics. The
assessment should ask not only “is this financially tolerable?” and “will the patient have a better
quality of life?” but also, “will this decision be supported by social justice?” and “will this
decision fulfill the organization’s ethical obligations, based on its moral agency?”
Health care organizational policy that prioritizes assessment of patient goals as well as tolerable
costs (at both the patient and organizational level) is aligned with the human right to quality
health care. The human rights framework is not only based on respect for autonomy, but also the
value of individual dignity, integrity, and vulnerability.87 The needs of patients as well as the
tolerable costs of decisions should be assessed using a gauge of human dignity, integrity of
persons, and respect for human vulnerability. Once the focus on patient goals and tolerable costs
has been established, a framework to facilitate justified allocation of resources can be developed.
Until now, there has been inconsistency in definitions of equity and ethical concepts related to
allocation and priority setting for health care resources.88 An effective framework for resource
allocation should establish relevant ethical concepts and apply principles of health are equity.
Developing a Framework for Resource allocation
A framework for resource allocation is needed for health care delivery organizations to
manage available, limited resources. Until now, discourse related to resource allocation in health
care has primarily been focused on national and global management of limited health care
231
resources. Specifically, global health discourse is moving toward a focus on state universal
health coverage, including discussions surrounding which services should be included, who
should be served, who should be served first, how coverage could be based on need, how the
greatest improvement of health could be facilitated, how to require coverage based on ability to
pay versus need, and how health care spending will fit into overall national spending.89 While a
global approach is noble, it may be far from consensus. At the national level, resource allocation
has also varied and been based on differing priorities and values. For example, in the UK, the
National Institute for Health Care Excellence serves as a designated organization to provide
ethical justification for resource allocation that privileges cost effectiveness, but also considers
other social and ethical values.90 While some countries have established national health care
priority setting, the United States is far from establishing an overarching national policy for
health care resource allocation. Even when (and if) a national or global approach is established;
health care delivery organizations will still need to make decisions on how to allocate resources
available to them since each health care delivery organization in the united states will always
face unique challenges based on geographic location and patient mix.
There are many barriers to connecting frameworks for healthcare priority setting and
practical policy-making.91 Health care delivery organizations each face unique challenges to
implementing ethical resource allocation policy and procedures. A resource allocation
framework must be designed to fit the needs of diverse delivery organizations and patient
populations. Within a single health care delivery organization, there is a range of decision-
makers, settings, scope and type of decisions, and criteria for resource allocation.92 An ethical
framework for resource allocation should incorporate this organizational diversity while also
creating a structured process that can be followed uniformly. This will require a focus on the
232
process and structure of decision-making that is flexible to fit to different organizational
structures in health care delivery.
So far, the most developed published theory that begins to address this need is Norman
Daniels’ accountability for reasonableness theory of healthcare resource allocation. Daniels’
theory establishes a process rather than requiring agreement on principles, incorporating
elements of decision-making and moral legitimacy through the following key elements:
transparency for the foundations of decisions, rational appeals that everyone can accept as
relevant to meeting needs fairly, and procedures revising decisions if there are challenges.93 It
attempts to address the gap between national health care planning and local realities within
limited resources by applying priority-setting criteria to health systems.94 The accountability for
reasonableness theory is an approach that incorporates some useful elements for resource
allocation. This theory addresses legitimacy and fairness of care access based on publicly
accessible rationales that are assessed to be relevant for meeting the patient’s needs under
resource constraints.95 Some components of accountability for reasonableness are especially
useful for an ethical resource allocation framework. For example, the publicity condition is
important for critical care unit bed allocations as direct communication between physicians and
end-users can improve fairness of decisions.96 While this theory has useful elements, it is
incomplete in its approach to ethical decision-making within the health care delivery
organization.
Accountability for reasonableness seeks both legitimacy and fairness while considering
morally relevant needs and can be a valuable tool for setting limits in health care; however, it
still needs to be specified to achieve fair, explicit, limit-setting decisions within health care
organizations for treatment decisions about needs versus preferences, and is open to serious
233
disagreement about ethical legitimacy of choices.97 Accountability for reasonableness does not
incorporate the distributive justice concerns related to social determinants of health and its
process does not incorporate the importance of patient values and goals in ethical decision-
making. Assumptions are made on behalf of the patient, which may or may not be accurate. The
multicultural and diverse nature of the U.S. population requires that an ethical resource
allocation framework incorporate the diverse needs of patients that respects the nature of human
vulnerability, acknowledges the social responsibility of health care organizations and is
ultimately in support of the human right to health care. The accountability for reasonableness
theory, on the other hand, includes utilitarian-like cost-effectiveness calculations, disregarding
separateness of persons, which could be unfair to individual interests sacrificed for group.98 A
framework for ethical resource allocation should incorporate elements of cultural competency
and shared decision-making to adequately address the key factors of individual patient values,
preferences, and goals.
The resource allocation framework should give health care delivery organizations the
structure and process for basing resource allocation decisions on justice with the goal of
promoting human rights. Resource allocation decisions may include both efficiency and equity
principles with potential decision-making criteria including health gain, clinical effectiveness,
and the ability to provide quality of life improvements.99 These decisions will be facilitated at the
organizational policy level, and at the beside. Ethics committees will play a key role in
facilitating these decisions at both levels. Ethics committees will be involved in developing
organizational policy and also consulting at the bedside. Clinical ethics consultation should
prioritize the conversation and mediation of the decision-making process and look for closure
where parties feel a deep sense of completeness in the outcome, rather than a specific
234
endpoint.100 The resource allocation framework will emphasize the process of matching patient
goals with treatments that have the best chance of meeting those goals.
The role of the provider is also essential in this process. When delivering care in a
resource poor environment (where clinicians and health care delivery organizations have
knowledge but not means to carry out beneficial interventions,) ethical decision-making at both
the organizational and provider level can be improved through experience, adaptability, cultural
sensitivity, situational awareness, beneficence, courage, honesty and fairness.101 The framework
must not only include provisions for transparency and appeals, but also focus on the
organizational culture plus leadership and provider competencies that will facilitate ethical
decision-making. The role of nursing is also important since ethical conflicts related to
healthcare provider and system-level factors can directly affect a nurse’s capacity to address
complex clinical situations at the bedside, including skill and confidence in the organization’s
culture of ethics.102 The role of providers and staff should be emphasize in a resource allocation
framework within health care delivery organizations. Health care delivery organizations poses a
unique role in the facilitation of ethical organizational culture and point of care decision-making.
The resource allocation framework should also include transparency of the decision-
making process. This decision-making process should always have the patient-physician
relationship as the point of focus. A transparent discussion is needed to determine how
comparative effectiveness research can be balanced between physician discretion, patient
autonomy and system-level restrictions, with a goal of using clinical data to inform decision-
making within a flexible system responsive to the complexity of health care.103 Decisions about
resource allocation at the level of health care delivery should incorporate clinical data and best
practices with the flexibility to meet patient-specific values and goals. Cost should also be part of
235
this discussion where relevant since there is a need for clear, explicit, transparent, inclusive
process to determine how costs should be controlled, based on a shared social understanding.104
A resource allocation framework will incorporate other related concepts, such as accountability
for reasonableness and evidence-based medicine, although existing concepts are not
comprehensive and must be supplemented with additional framework elements. For example,
evidence-based medicine seeks to generalize treatments, which may not be appropriate for all
individuals in an ethnoculturally diverse context such as in the United States.105 In general, an
ethical resource allocation framework should encompass a structure in which health care delivery
organizations can make decisions when facing finite resources, supported by human rights,
organizational moral agency, patient care quality, and justice.
1 Gabbay, E., J. Calvo‐Broce, K. B. Meyer, T. A. Trikalinos, J. Cohen, and D. M. Kent. "The Empirical Basis for Determinations of Medical Futility." J Gen Intern Med 25, no. 10 (Oct 2010): 1083‐9.
2 Saric, L., I. Prkic, and M. Jukic. "Futile Treatment‐a Review." [In eng]. J Bioeth Inq 14, no. 3 (Sep 2017): 329‐37. 3 Olmstead, J. A., and M. D. Dahnke. "The Need for an Effective Process to Resolve Conflicts over Medical Futility: A Case Study and Analysis." Crit Care Nurse 36, no. 6 (Dec 2016): 13‐23.
4 Neville, T. H., A. Ziman, and N. S. Wenger. "Blood Products Provided to Patients Receiving Futile Critical Care." J Hosp Med 12, no. 9 (Sep 2017): 739‐42.
5 Misak, C. J., D. B. White, and R. D. Truog. "Medically Inappropriate or Futile Treatment: Deliberation and Justification." J Med Philos 41, no. 1 (Feb 2016): 90‐114.
6 Yew Kong, Lee, Low Wah Yun, and Chirk Jenn Ng. "Exploring Patient Values in Medical Decision Making: A Qualitative Study." PLoS One 8, no. 11 (Nov 2013).
7 Margenthaler, Julie A. M. D. Facs, and David W. M. D. Facs Ollila. "Breast Conservation Therapy Versus Mastectomy: Shared Decision‐Making Strategies and Overcoming Decisional Conflicts in Your Patients." Annals of Surgical Oncology 23, no. 10 (Oct 2016): 3133‐37.
8 Chen, Jie, Daniel C. Mullins, Priscilla Novak, and Stephen B. Thomas. "Personalized Strategies to Activate and Empower Patients in Health Care and Reduce Health Disparities." Health Education & Behavior 43, no. 1 (February 2016): 25‐34.
9 Jiang, Z., L. Yang, P. Guo, and S. Gong. "Autonomy and Authority in Medical Futility." J Biomed Res 28, no. 6 (Nov 2014): 433‐4.
10 Mohindra, R. K. "Medical Futility: A Conceptual Model." J Med Ethics 33, no. 2 (Feb 2007): 71‐5. 11 Epstein, Wendy Netter. "Nudging Patient Decision‐Making." Washington Law Review 92, no. 3 (2017): 1255‐315. 12 Shin, Dong Wook, Juhee Cho, Debra L. Roter, So Young Kim, Hyung Kook Yang, Keeho Park, Hyung Jin Kim, et al. "Attitudes toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists." Psycho ‐ Oncology 26, no. 6 (Jun 2017): 770‐78.
13 White, D. B., N. Ernecoff, P. Buddadhumaruk, S. Hong, L. Weissfeld, J. R. Curtis, J. M. Luce, and B. Lo. "Prevalence of and Factors Related to Discordance About Prognosis between Physicians and Surrogate Decision Makers of Critically Ill Patients." Jama 315, no. 19 (May 17 2016): 2086‐94.
236
14 Geros‐Willfond, K. N., S. S. Ivy, K. Montz, S. E. Bohan, and A. M. Torke. "Religion and Spirituality in Surrogate Decision Making for Hospitalized Older Adults." J Relig Health 55, no. 3 (Jun 2016): 765‐77.
15 Ernecoff, N. C., F. A. Curlin, P. Buddadhumaruk, and D. B. White. "Health Care Professionals' Responses to Religious or Spiritual Statements by Surrogate Decision Makers During Goals‐of‐Care Discussions." JAMA Intern Med 175, no. 10 (Oct 2015): 1662‐9.
16 Cauley, C. E., S. D. Block, L. A. Koritsanszky, J. D. Gass, J. L. Frydman, S. M. Nurudeen, R. E. Bernacki, and Z. Cooper. "Surgeons' Perspectives on Avoiding Nonbeneficial Treatments in Seriously Ill Older Patients with Surgical Emergencies: A Qualitative Study." J Palliat Med 19, no. 5 (May 2016): 529‐37.
17 Schneiderman, L. J. "Defining Medical Futility and Improving Medical Care." J Bioeth Inq 8, no. 2 (Jun 2011): 123‐31.
18 Neville, T. H., J. F. Wiley, E. S. Holmboe, C. H. Tseng, P. Vespa, E. C. Kleerup, and N. S. Wenger. "Differences between Attendings' and Fellows' Perceptions of Futile Treatment in the Intensive Care Unit at One Academic Health Center: Implications for Training." Acad Med 90, no. 3 (Mar 2015): 324‐30.
19 Dzeng, E., A. Colaianni, M. Roland, D. Levine, M. P. Kelly, S. Barclay, and T. J. Smith. "Moral Distress Amongst American Physician Trainees Regarding Futile Treatments at the End of Life: A Qualitative Study." J Gen Intern Med 31, no. 1 (Jan 2016): 93‐9.
20 Teunis, Teun M. D., Stein M. D. Janssen, Thierry G. M. D. PhD Guitton, David M. D. PhD Ring, and Robert M. D. Parisien. "Do Orthopaedic Surgeons Acknowledge Uncertainty?" Clinical Orthopaedics and Related Research 474, no. 6 (Jun 2016): 1360‐69.
21 Jiang, Z., L. Yang, P. Guo, and S. Gong. "Medical Futility in the Era of Evidence‐Based Medicine." J Biomed Res 28, no. 4 (Jul 2014): 249‐50.
22 McQuoid‐Mason, D. J. "Should Doctors Provide Futile Medical Treatment If Patients or Their Proxies Are Prepared to Pay for It?" S Afr Med J 107, no. 2 (Jan 30 2017): 108‐09.
23 Barnard, David. "Vulnerability and Trustworthiness." Cambridge Quarterly of Healthcare Ethics 25, no. 2 (Apr 2016): 288‐300.
24 Leppin, Aaron L., Marleen Kunneman, Julie Hathaway, Cara Fernandez, Victor M. Montori, and Jon C. Tilburt. "Getting on the Same Page: Communication, Patient Involvement and Shared Understanding of "Decisions" in Oncology." Health Expectations 21, no. 1 (Feb 2018): 110‐17.
25 Bandini, Julia I., Andrew Courtwright, Angelika A. Zollfrank, Ellen M. Robinson, and Wendy Cadge. "The Role of Religious Beliefs in Ethics Committee Consultations for Conflict over Life‐Sustaining Treatment." Journal of Medical Ethics 43, no. 6 (Jun 2017): 353.
26 Wilkinson, D. J. C. "Rationing Conscience." Journal of Medical Ethics: The Journal of the Institute of Medical Ethics 43, no. 4 (2018‐01‐13 2017): 226‐29.
27 Reed, Peter, Douglas A. Conrad, Susan E. Hernandez, Carolyn Watts, and Miriam Marcus‐Smith. "Innovation in Patient‐Centered Care: Lessons from a Qualitative Study of Innovative Health Care Organizations in Washington State." BMC Family Practice 13 (2012): 120.
28 Dreachslin, Janice L. "Diversity Management and Cultural Competence: Research, Practice, and the Business Case." Journal of Healthcare Management 52, no. 2 (Mar/Apr 2007): 79‐86.
29 Simon, J. R., C. Kraus, M. Rosenberg, D. H. Wang, E. P. Clayborne, and A. R. Derse. ""Futile Care"‐an Emergency Medicine Approach: Ethical and Legal Considerations." Ann Emerg Med 70, no. 5 (Nov 2017): 707‐13.
30 Huynh, T. N., E. C. Kleerup, P. P. Raj, and N. S. Wenger. "The Opportunity Cost of Futile Treatment in the Icu*." Crit Care Med 42, no. 9 (Sep 2014): 1977‐82.
31 Tubbs, James B., Jr. A Handbook of Bioethics Terms. Washington, UNITED STATES: Georgetown University Press, 2009.
32 Ter Meulen, Ruud. "Solidarity and Justice in Health Care: A Critical Analysis of Their Relationship." Diametros: An Online Journal of Philosophy 43 (2018‐01‐13 2015): 1‐20.
33 Ter Meulen, R. "Solidarity, Justice, and Recognition of the Other." Theor Med Bioeth 37, no. 6 (Dec 2016): 517‐29.
34 Edgar, Andrew, and Stephen Pattison. "Flourishing in Health Care." Health Care Analysis : HCA 24, no. 2 (Jun 2016): 161‐73.
35 Kinnear, John, and Ruth Jackson. "Constructing Diagnostic Likelihood: Clinical Decisions Using Subjective Versus Statistical Probability." Postgraduate Medical Journal 93, no. 1101 (Jul 2017): 425.
237
36 FitzGerald, Chloe, and Samia Hurst. "Implicit Bias in Healthcare Professionals: A Systematic Review." BMC Medical Ethics 18 (2017).
37 Bailey, Zinzi D., Nancy Krieger, Madina Agénor, Jasmine Graves, Natalia Linos, and Mary T. Bassett. "Structural Racism and Health Inequities in the USA: Evidence and Interventions." The Lancet 389, no. 10077 (2017): 1453‐63.
38 Wallace, M., J. Crear‐Perry, L. Richardson, M. Tarver, and K. Theall. "Separate and Unequal: Structural Racism and Infant Mortality in the Us." Health Place 45 (May 2017): 140‐44.
39 Sargent‐Cox, K. "Ageism: We Are Our Own Worst Enemy." Int Psychogeriatr 29, no. 1 (Jan 2017): 1‐8. 40 Pritchard‐Jones, L. "Ageism and Autonomy in Health Care: Explorations through a Relational Lens." [In eng]. Health Care Anal 25, no. 1 (Mar 2017): 72‐89.
41 Marcum, James A. "Clinical Decision‐Making, Gender Bias, Virtue Epistemology, and Quality Healthcare." Topoi: An International Review of Philosophy 36, no. 3 (2017‐12‐19 2017): 501‐08.
42 Phibbs, Sandi Cleveland, Jennifer Faith, and Sheryl Thorburn. "Patient‐Centred Communication and Provider Avoidance: Does Body Mass Index Modify the Relationship?" The Health Education Journal 76, no. 1 (Feb 2017): 120‐27.
43 Lewis, J. A., M. G. Williams, E. J. Peppers, and C. A. Gadson. "Applying Intersectionality to Explore the Relations between Gendered Racism and Health among Black Women." J Couns Psychol 64, no. 5 (Oct 2017): 475‐86.
44 Mattarozzi, Katia PhD, Valentina PhD Colonnello, Francesco M. S. N. De Gioia, and Alexander PhD Todorov. "I Care, Even after the First Impression: Facial Appearance‐Based Evaluations in Healthcare Context." Social Science & Medicine 182 (Jun 2017): 68.
45 Alam, Rahul, Sudeh Cheraghi‐Sohi, Maria Panagioti, Aneez Esmail, Stephen Campbell, and Efharis Panagopoulou. "Managing Diagnostic Uncertainty in Primary Care: A Systematic Critical Review." BMC Family Practice 18 (2017).
46 Lyell, David, Farah Magrabi, Magdalena Z. Raban, L. G. Pont, Melissa T. Baysari, Richard O. Day, and Enrico Coiera. "Automation Bias in Electronic Prescribing." BMC Medical Informatics and Decision Making 17 (2017).
47 Tapper, E. B. "Consults for Conflict: The History of Ethics Consultation." Proc (Bayl Univ Med Cent) 26, no. 4 (Oct 2013): 417‐22.
48 Arnason, Gardar. "The Role and Obligations of Ethicists as Members of Ethics Committees in Professional Organizations." AJOB Neuroscience 8, no. 1 (Jan‐Mar 2017): 18‐20.
49 Romain, Frederic, and Andrew Courtwright. "Can I Trust Them to Do Everything? The Role of Distrust in Ethics Committee Consultations for Conflict over Life‐Sustaining Treatment among Afro‐Caribbean Patients." Journal of Medical Ethics: The Journal of the Institute of Medical Ethics 42, no. 9 (2018‐01‐13 2016): 582‐85.
50 Altisent, Rogelio, Nieves Martín‐Espildora, and Maria Teresa Delgado‐Marroquín. "Health Care Ethics Consultation: Individual Consultant or Committee Model? Pros and Cons." American Journal of Bioethics 13, no. 2 (2018‐01‐13 2013): 25‐27.
51 Marcus, Brian S., Gary Shank, Jestin N. Carlson, and Arvind Venkat. "Qualitative Analysis of Healthcare Professionals' Viewpoints on the Role of Ethics Committees and Hospitals in the Resolution of Clinical Ethical Dilemmas." HEC Forum 27, no. 1 (March 2015): 11‐34.
52 Jansky, Maximiliane, Gabriella Marx, Friedemann Nauck, and Bernd Alt‐Epping. "Physicians' and Nurses' Expectations and Objections toward a Clinical Ethics Committee." Nursing Ethics 20, no. 7 (Nov 2013): 771‐83.
53 Hamric, A. B., and E. G. Epstein. "A Health System-Wide Moral Distress Consultation Service: Development and Evaluation." [In eng]. HEC Forum 29, no. 2 (Jun 2017): 127-43. 54 Weisleder, P. "Health Care Rationing in a Just Society: The Clinical Effectiveness Model." [In eng]. Semin Pediatr Neurol 22, no. 3 (Sep 2015): 201‐4.
55 Davies, Ben. "Fair Innings and Time‐Relative Claims." Bioethics 30, no. 6 (2018‐01‐13 2016): 462‐68. 56 Oczkowski, S. "Antimicrobial Stewardship Programmes: Bedside Rationing by Another Name?" J Med Ethics 43, no. 10 (Oct 2017): 684‐87.
57 Malaiyandi, D. P., G. V. Henderson, and M. A. Rubin. "Transfusion of Blood Products in the Neurocritical Care Unit: An Exploration of Rationing and Futility." Neurocrit Care (Dec 29 2017).
58 Kulkarni, K., S. J. Karssiens, H. Massie, and H. Pandit. "Smoking and Orthopaedic Surgery: Does the Evidence Support Rationing of Care?" Musculoskeletal Care 15, no. 4 (Dec 2017): 400‐04.
59 Strech, D., and M. Danis. "How Can Bedside Rationing Be Justified Despite Coexisting Inefficiency? The Need for 'Benchmarks of Efficiency'." J Med Ethics 40, no. 2 (Feb 2014): 89‐93.
238
60 Owen‐Smith, A., J. Donovan, and J. Coast. "How Clinical Rationing Works in Practice: A Case Study of Morbid Obesity Surgery." Soc Sci Med 147 (Dec 2015): 288‐95.
61 Reese, P. P., A. L. Caplan, R. D. Bloom, P. L. Abt, and J. H. Karlawish. "How Should We Use Age to Ration Health Care? Lessons from the Case of Kidney Transplantation." J Am Geriatr Soc 58, no. 10 (Oct 2010): 1980‐6.
62 Bail, K., and L. Grealish. "'Failure to Maintain': A Theoretical Proposition for a New Quality Indicator of Nurse Care Rationing for Complex Older People in Hospital." Int J Nurs Stud 63 (Nov 2016): 146‐61.
63 Higgs, M., R. Fernandez, S. Polis, and V. Manning. "Similarities and Differences in Nurse‐Reported Care Rationing between Critical Care, Surgical, and Medical Specialties." J Patient Saf (Nov 2 2016).
64 Martin, L. J., M. H. Roper, L. Grandjean, R. H. Gilman, J. Coronel, L. Caviedes, J. S. Friedland, and D. A. Moore. "Rationing Tests for Drug‐Resistant Tuberculosis ‐ Who Are We Prepared to Miss?" BMC Med 14 (Mar 23 2016): 30.
65 Oei, Grace. "Explicit Versus Implicit Rationing: Let's Be Honest." [In English]. American Journal of Bioethics 16, no. 7 (2018‐01‐13 2016): 68‐70.
66 Vryonides, Stavros, Evridiki Papastavrou, Andreas Charalambous, Panayiota Andreou, and Anastasios Merkouris. "The Ethical Dimension of Nursing Care Rationing." [In English]. Nursing Ethics 22, no. 8 (Dec 2015): 881‐900.
67 Sheeler, R. D., T. Mundell, S. A. Hurst, S. D. Goold, B. Thorsteinsdottir, J. C. Tilburt, and M. Danis. "Self‐Reported Rationing Behavior among Us Physicians: A National Survey." J Gen Intern Med 31, no. 12 (Dec 2016): 1444‐51.
68 van de Wetering, E. J., N. J. van Exel, and W. B. Brouwer. "Health or Happiness? A Note on Trading Off Health and Happiness in Rationing Decisions." Value Health 19, no. 5 (Jul‐Aug 2016): 552‐7.
69 Fleck, Leonard M. "Choosing Wisely." Cambridge Quarterly of Healthcare Ethics 25, no. 3 (Jul 2016 2017‐10‐06 2016): 366‐76. 70 Kocarnik, Jonathan M. "Disclosing Controversial Risk in Informed Consent: How Serious Is Serious?" American Journal of Bioethics 14, no. 4 (2014): 13‐14.
71 Meyerson, Denise. "Innovative Surgery and the Precautionary Principle." Journal of Medicine and Philosophy 38, no. 6 (2013): 605‐24.
72 Joffe, Steven, and Jennifer W. Mack. "Deliberation and the Life Cycle of Informed Consent." Hastings Center Report 44, no. 1 (2018‐01‐13 2014): 33‐35.
73 Schulz, Valerie Marie M. D. Frcpc M. P. H., Allison M. BHSc M. D. Ccfp Crombeen, Denise BSc M. D. Ccfp Fcfp Marshall, Joshua M. D. Mcisc Ccfp Shadd, Kori A. PhD LaDonna, and Lorelei PhD Lingard. "Beyond Simple Planning: Existential Dimensions of Conversations with Patients at Risk of Dying from Heart Failure." Journal of Pain and Symptom Management 54, no. 5 (Nov 2017): 637.
74 Hilmer, Sarah N., Danijela Gnjidic, and David G. Le Couteur. "Thinking through the Medication List: Appropriate Prescribing and Deprescribing in Robust and Frail Older Patients." Australian Family Physician 41, no. 12 (Dec 2012): 924‐8.
75 Halabi, Sam. "Selling Hospice." The Journal of Law, Medicine & Ethics 42, no. 4 (December 2014): 442‐54. 76 Pratesi, A., F. Orso, C. Ghiara, A. Lo Forte, A. C. Baroncini, M. L. Di Meo, E. Carassi, and S. Baldasseroni. "Cardiac Surgery in the Elderly: What Goals of Care?" Monaldi Arch Chest Dis 87, no. 2 (Jul 18 2017): 852. 77 Sedhom, R., and D. Barile. "Discussing Goals of Care with Families Using the Four Steps." Gerontol Geriatr Med 2 (Jan-Dec 2016): 2333721416664446. 78 Yarnell, C., and R. Fowler. "The Case for Routine Goals-of-Care Documentation." BMJ Qual Saf 25, no. 9 (Sep 2016): 647-8. 79 Harle, I., S. Karim, W. Raskin, W. M. Hopman, and C. M. Booth. "Toward Improved Goals-of-Care Documentation in Advanced Cancer: Report on the Development of a Quality Improvement Initiative." Curr Oncol 24, no. 6 (Dec 2017): 383-89. 80 Dunlay, S. M., and J. J. Strand. "How to Discuss Goals of Care with Patients." Trends Cardiovasc Med 26, no. 1 (Jan 2016): 36-43. 81 Cummings, A., S. Lund, N. Campling, C. R. May, A. Richardson, and M. Myall. "Implementing Communication and Decision-Making Interventions Directed at Goals of Care: A Theory-Led Scoping Review." BMJ Open 7, no. 10 (Oct 6 2017): e017056. 82 Wittenberg, E., B. Ferrell, J. Goldsmith, H. Buller, and T. Neiman. "Nurse Communication About Goals of Care." J Adv Pract Oncol 7, no. 2 (Mar 2016): 146-54.
239
83 Hanson, L. C., S. Zimmerman, M. K. Song, F. C. Lin, C. Rosemond, T. S. Carey, and S. L. Mitchell. "Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial." JAMA Intern Med 177, no. 1 (Jan 1 2017): 24-31. 84 Schwartz, Peter H. "Comparative Risk: Good or Bad Heuristic?" American Journal of Bioethics 16, no. 5 (2016): 20‐22.
85 Castlen, J. P., D. J. Cote, W. A. Moojen, P. A. Robe, N. Balak, J. Brennum, M. Ammirati, T. Mathiesen, and M. L. D. Broekman. "The Changing Health Care Landscape and Implications of Organizational Ethics on Modern Medical Practice." World Neurosurg 102 (Jun 2017): 420-24. 86 Blanchard, Jeremy R. M. D. M. M. M. C. P. E. Facp Fccp. "Applying the Risk Discernment Process." Physician Leadership Journal 2, no. 1 (Jan/Feb 2015): 36‐39.
87 Brännmark, Johan. "Respect for Persons in Bioethics: Towards a Human Rights‐Based Account." Human Rights Review 18, no. 2 (Jun 2017): 171‐87.
88 Lane, Haylee, Mitchell Sarkies, Jennifer Martin, and Terry Haines. "Equity in Healthcare Resource Allocation Decision Making: A Systematic Review." Social Science & Medicine 175 (Feb 2017): 11.
89 Rumbold, B., R. Baker, O. Ferraz, S. Hawkes, C. Krubiner, P. Littlejohns, O. F. Norheim, et al. "Universal Health Coverage, Priority Setting, and the Human Right to Health." Lancet 390, no. 10095 (Aug 12 2017): 712‐14.
90 Rumbold, B., A. Weale, A. Rid, J. Wilson, and P. Littlejohns. "Public Reasoning and Health‐Care Priority Setting: The Case of Nice." Kennedy Inst Ethics J 27, no. 1 (2017): 107‐34.
91 Kapiriri, L., and D. Razavi. "How Have Systematic Priority Setting Approaches Influenced Policy Making? A Synthesis of the Current Literature." Health Policy 121, no. 9 (Sep 2017): 937‐46.
92 Harris, C., K. Allen, C. Waller, and V. Brooke. "Sustainability in Health Care by Allocating Resources Effectively (Share) 3: Examining How Resource Allocation Decisions Are Made, Implemented and Evaluated in a Local Healthcare Setting." BMC Health Serv Res 17, no. 1 (May 9 2017): 340.
93 Daniels, N. "Accountability for Reasonableness." [In eng]. Bmj 321, no. 7272 (Nov 25 2000): 1300‐1. 94 Byskov, J., B. Marchal, S. Maluka, J. M. Zulu, S. A. Bukachi, A. K. Hurtig, A. Blystad, et al. "The Accountability for Reasonableness Approach to Guide Priority Setting in Health Systems within Limited Resources‐‐Findings from Action Research at District Level in Kenya, Tanzania, and Zambia." Health Res Policy Syst 12 (Aug 20 2014): 49.
95 Daniels, N. "Decisions About Access to Health Care and Accountability for Reasonableness." J Urban Health 76, no. 2 (Jun 1999): 176‐91.
96 Cooper, A. B., A. S. Joglekar, J. Gibson, A. H. Swota, and D. K. Martin. "Communication of Bed Allocation Decisions in a Critical Care Unit and Accountability for Reasonableness." BMC Health Serv Res 5 (Oct 31 2005): 67.
97 Nunes, R., and G. Rego. "Priority Setting in Health Care: A Complementary Approach." Health Care Anal 22, no. 3 (Sep 2014): 292‐303.
98 Badano, G. "If You're a Rawlsian, How Come You're So Close to Utilitarianism and Intuitionism? A Critique of Daniels's Accountability for Reasonableness." Health Care Anal (Mar 22 2017).
99 Ratcliffe, J., E. Lancsar, R. Walker, and Y. Gu. "Understanding What Matters: An Exploratory Study to Investigate the Views of the General Public for Priority Setting Criteria in Health Care." Health Policy 121, no. 6 (Jun 2017): 653‐62.
100 Fiester, Autumn. "Neglected Ends: Clinical Ethics Consultation and the Prospects for Closure." The American Journal of Bioethics 15, no. 1 (2015): 29‐36.
101 Iserson, Kenneth V. "Providing Ethical Healthcare in Resource‐Poor Environments." HEC Forum (January 19 2018).
102 Pavlish, Carol PhD R. N. Faan, Katherine M. A. R. N. Brown‐Saltzman, Loretta M. S. N. R. N. Cgrn So, Amy M. S. N. R. N. C. N. L. Heers, and Nicole M. S. N. R. N. Iorillo. "Avenues of Action in Ethically Complex Situations: A Critical Incident Study." Journal of Nursing Administration 45, no. 6 (Jun 2015): 311.
103 Peppercorn, Jeffrey, S. Yousuf Zafar, Kevin Houck, Peter Ubel, and Neal J. Meropol. "Does Comparative Effectiveness Research Promote Rationing of Cancer Care?" Lancet Oncology 15, no. 3 (Mar 2014): e132‐8.
104 Fleck, Leonard M. "Choosing Wisely." Cambridge Quarterly of Healthcare Ethics 25, no. 3 (Jul 2016): 366‐76. 105 Whitley, Rob PhD, Cecile M. D. Rousseau, Elizabeth PhD Carpenter‐Song, and Laurence J. M. D. Frcpc Kirmayer. "Evidence‐Based Medicine: Opportunities and Challenges in a Diverse Society." Canadian Journal of Psychiatry 56, no. 9 (Sep 2011): 514‐22.
240
Chapter 6: Organizational Policy Framework for Resource Allocation
Ethical health care resource allocation will promote and protect health care quality and human
rights. This can be accomplished through organizational policy that includes fairness in value
assessments and response to challenges of nonbeneficial interventions. It can be implemented
through a practical, formalized, and cohesive resource allocation framework for health care
delivery organizations that includes decision-making process, methods, and evaluation
mechanisms.
6a Resource allocation
Resource allocation should focus on patient-directed goals, using cultural competence and shared
decision-making as tools to alleviate inequalities caused by social determinants of health.
Focusing on assessment of patient goals and tolerable first and foremost will ensure that
treatments are aimed at the patient’s values and goals of care. When all desired patient goals can
be met, a mechanism must be in place to evaluate and implement prioritization of scarce
resources. This will involve assessment of both fairness and value. The prioritization of scarce
resources can be illustrated through applications to the medical futility and end-of-life care
debate.
6 ai Assessing Fairness & Value
Fairness and value will be the basis for resource allocation assessments. Fairness is
explained in terms of equity and justice, and value is explained in terms of quality and cost.
Fairness (Equity & Justice)
The resource allocation framework will be based in fairness and equity on two major
levels – the bedside level and the organizational policy level and the. The bedside level will
address fairness of the physician-patient interaction including treatment plans made through
241
shared decision-making while the organizational policy level will address equity and justice for
the population or community of patients that the health care delivery organization serves.
Support for bedside decision-making in the face of scarce resources includes concerns of
justice from the perspective of both the patient and the health care provider. Justice must be
protected at the bedside to protect the patient from provider bias. Many times, physicians do not
even realize that they are making biased decision at the bedside, and it can be a challenge to
bring these biases to light. There is a tendency to underestimate one’s own susceptibility to
cognitive bias, also called intellectual deference, where individuals often fail to listen to advice
on avoiding bias due to their overconfidence about their own intellectual abilities.1 Physicians
may not realize or think that they are susceptible to bias, and may be engaging in implicit bias
when making bedside rationing decisions. This can create a range of emotional responses from
both the provider and patient level, depending on the perceived fairness of both process and
outcome. Anger and frustration can occur when an unfavorable outcome results from an unfair
procedure, while guilt and anxiety can occur when an unfair process results in a favorable
outcome.2 The fairness of both process and outcome are essential for the well-being of both
patient and provider. Lack of fairness in process or outcome may lead to moral distress in
providers and staff. There is a significant negative correlation between perceived organizational
justice and moral distress of nurses, illustrating the need for organizations to create appropriate
policies that are transparent and clear.3 When policies demonstrate procedural and distributive
justice, nurses and physicians will be less likely to face moral distress when facing difficult
bedside allocation decisions.
The fairness of process can be influenced by factors of personal motivation. Individuals
can be motivated toward justice based on rational utility maximization, status and social value
242
maximization, or personal identity associated with moral priorities.4 Since there is potential for
variation of motivations between patients and providers, a standardized, structured, ethically
sound approach to this type of decision-making should be established. This will support unbiased
decision-making and also support shared decision-making between the provider and patient.
The provider and patient must also consider goals of care outcomes when determining
which decision is founded in equity and justice. Using economic opportunity restoration as the
sole justification for care is not enough to explain justice in health care. Palliative care illustrates
this point. Palliative care is offered when opportunities cannot be restored and is instead focused
on less painful treatment and treatments for those who cannot be cured.5 If the outcome is not
aligned with the patient’s goals, preferences, and needs it will not be based in justice and equity.
Both the process and outcome must be based in equity and justice for ethical resource allocation
to be established.
The social nature of health care helps to explain the importance of fairness in the process
and outcomes of health care delivery. Freedom is situated or socially bound meaning that society
has a role in creating the alternatives available for people to choose. In other words, individuals
do not exist in isolation and there is a shared responsibility for bad health even if a health
outcome seems to be the product of free choice.6 The social responsibility that results from the
social nature of health care, combined with the moral agency of health care delivery
organizations, places moral obligations on the health care delivery organization to provide
equitable health care. Importantly, those with social disadvantage lack material, social, and/or
environmental equality such as: the inability to purchase goods, services, influence; treatment
within society based on social factors such as race; and exposure to concentrated poverty.7 These
factors offer a limited amount of control over a person’s social situation, so they have limited
243
moral relevance to health care justice and equity. The life-course perspective explains that
economic and social factors influence opportunities across lifetimes and generations.8 Even if an
individual pursues opportunity to improve their social situation, social disadvantages from
previous experiences, as well as social disadvantages from generations before them can continue
to negatively impact their opportunity for health and well-being. This again provides a limited
amount of control over social context to the individual. Generational trajectories of health
disparities can even be influenced by non-health policies – for example, the historical impact of
exclusionary federal government housing policies which continue to affect the housing market
today.9 When an individual starts life with severe socially-constructed challenges and barriers to
health, health is compromised by generational and historical from the day a person is born. These
disadvantages are not morally relevant reasons for a person to receive inadequate health care.
Justice related to the outcomes of how health care resources are allocated is called
distributive justice. Distributive justice can be based on: the contribution principle, or allocation
of resources based on a person’s sum of contributions to others; the equality principle, or
allocation of resources as the same for all persons involved; or the need principle of social
justice, which allocates resources based on individual needs and desires.10 Since there are several
ways that distributive justice can be calculated and analyzed, it must be clear how an
organizational framework will approach distributive justice analysis. The goal of distributive
justice is to avoid morally arbitrary discrimination and address social conditions that interfere
with one’s ability to develop and exercise their potential capabilities.11 In health care, those
morally arbitrary social conditions that pose barriers to health opportunity should be eliminated
or corrected to ensure just allocation of resources.
244
In addition, power differentials can create health inequities that must be met by political
support for inclusion and human rights to health.12 This political support is an essential
component of justice and human rights in health care. Health care delivery organizations have a
role in addressing this power differential as well. Although political climate of power will have a
significant effect on a person’s ability to achieve the right to health, this right will ultimately be
carried out by the health care delivery organization. The right to health elicits a right to socially
controllable causes of health under budget constraints, as well as a moral duty of those in the
position to influence these social causes for the right holder.13 The health care delivery
organization has a moral duty to influence and address social causes that influence access to the
right to health, within budget constraints.
The social value established by power dynamics can influence the realization of the right
to health care. Social value is determined not just by outcomes, but also by process that
individuals are exposed to.14 This explains the importance of both procedural and distributive
justice. There may also be a role for interactional justice in addition to procedural justice, which
may function differently in terms of fair process versus equity of social comparison.15 In
summary, fairness includes process, outcomes and treatment of individuals that is based only on
morally relevant criteria.
Equity and justice principles are essential foundations for the resource allocation
framework since they will ensure that only morally relevant criteria are used to determine
processes and outcomes for fair health care distribution. In addition to the essential piece of
equity and justice, the resource allocation framework will incorporate value.
245
Value (Cost versus Benefit)
Value can be evaluated through robust comparative effectiveness and evidence-based
assessment. Assessment of value at the level of the delivery organization will ensure that
priorities are set within the limited resources available to the population that the organization
serves. The heterogeneous and fragmented health system in the United States cause difficulty in
equitable resource allocation at the levels of national policy and health care financing.16 This
results in health care delivery organizations receiving varying levels of resources compared to
the needs of the communities that they serve. Some health care delivery organizations have more
resources per patient than others. Those who have the fewest resources to serve their patient
population will especially need to consider value to ensure that community needs are being met
to the best of the organization’s ability, enacting their role in the human right to health.
Value assessments first need to determine the patient’s individual goals of care. There is
a need for an established process that incorporates patient values into decision-making and
practice guidelines in health care.17 Without a full understanding of the patient’s goals,
preferences, and needs there is no way to determine whether the treatment is beneficial for the
patient or not since health care is value-laden and effectiveness of a treatment depends on the
patient’s goals.
For example, cancer treatment is value-laden. Cancer treatment is not just the biology of
cancer, but also patient preferences, so treatments should be personalized and determined
through shared decision-making.18 The approach to value analysis must incorporate all effective
alternatives. For example, prevention, access to early diagnosis and radiotherapy are key factors
to effective cancer treatment, even though funding tends to be concentrated on cancer treatment
drugs.19 Different approaches may be more beneficial or less beneficial for different patients,
246
depending on their goals of care, preferences, and values. Share decision-making is an essential
tool for defining the goals of a patient’s care and developing a treatment plan based on those
goals.
The cost of care should be considered by health care delivery organizations when
developing resource allocation policy, but should only be one component of the analysis. A
middle-ground needs to be found between the benefit principle, or resources toward the
maximization and cost-effectiveness, and the worse off principle, which is related to equity.20
Those who need the care the most, based on criteria that includes goals of care may have some
level of weight against others who have less need or where a treatment is not aligned with their
goals of care. Purely focusing on cost-effectiveness may violate social values of equity and
distributive justice.21 While addressing cost-effectiveness of care, the value equation adds in the
essential piece of patient needs and goals. In other words, cost-effectiveness alone is not enough
to determine the ethical allocation of health care resources. Patient characteristics, needs and
goals must also have some weight and be incorporated into the decision-making process. In
addition, when incentivizing patients to engage in their health care, their personal needs and
reasonable options must be clear to them. Health incentives require rational deliberation and
must avoid restriction of options through coercive paternalism.22 The patient’s role in the
resource allocation framework will be essential, since patient characteristics are crucial variables
in the value equation.
Patient needs, preferences and values should be an integrated component of the resource
allocation framework. Frameworks should incorporate a range of patient-relevant outcomes, or
the flexibility to create tailored treatment where patient input assigns values to the range of
outcomes.23 There is no way to create a one-size-fits all approach that will address the needs and
247
goals of all patients, and the framework must incorporate this variable factor. Patient-centered
care and shared decision-making are tools that can be incorporated into the framework to ensure
that patient variables are adequately incorporated into value assessments. Different options may
offer the highest value for different patients since there are a range of treatments that may or may
not be aligned with a patient’s goals and preferences.24 The treatment that one patient values may
be different than that of another patient with the same clinical condition because of the nature of
human beings and personal values.
On an organizational policy level, values can be categorized and weighted, but there
should still be room for individual patient values to be incorporated into decision-making
through shared decision-making and patient-centered care. Health care delivery organizations are
may weigh and consider relevant value criteria for the community and population that they serve.
This value criteria could include disease severity, potential for health, past health loss,
socioeconomic status, area of living, gender, race, ethnicity, religion, sexual orientation,
economic productivity, care for others, and catastrophic health expenditures.25 These factors may
or may not be morally relevant for the health care population and resource constraints of the
delivery organizations.
The mix of patient vulnerability that a health care delivery organization serves may also
need to be incorporated into the assessment of value. Incapacitated and alone adults are
particularly vulnerable, and there is a need for adequately funded and monitored solutions that
incorporate a multidisciplinary, collaborative approach to protect their rights.26 This highlights
the need for and emphasis that should be placed on collaboration among care teams to provide
the highest value care that is consistent with patient goals.
248
In addition to individual patient goals, the organization should consider long-term
organizational goals in resource allocation decisions. Short-term costs, long-term cost savings
and patient outcomes should all be considered in organizational value analysis, with the ultimate
goal of determining the value added by an intervention, then developing evidence-based
guidelines supporting high-value choices.27 While a decision may save money in the short-term,
a solution that will be costly in the long-term may not carry the highest value. Those who lead
and develop policies for health care delivery organizations can use evidence-based guidelines to
determine which decisions might be most cost-effective in both the short and long-term.
Difficult decisions related to value and justice are common in health care delivery
organizations in the United States, and especially common when facing debates over medical
futility and end-of-life care decision-making.
6aii Medical Futility and End-Of-Life Care
Medical futility cases are often brought up at the end of life when interventions are
prolonging life but not achieving many or any other goals of care. These cases bring up difficult
questions of both justice and value. Medical interventions with little or no benefit to the patient
may also be costly and may even be inequitable when they are not aligned with the patient’s
goals of care. These issues of non-beneficial care often arise at the end of life when a patient
receives treatment that will not achieve any of their goals of care and only prolong their dying
process.
Medical Intervention with Little or no Benefit Addressing medical futility related to the resource allocation framework because cases of
medical futility are those that offer least benefit and some of the highest human and financial
costs. There can be conflict in medical futility cases due to underlying, unrevealed beliefs and
249
values that are not being addressed in the case. The resource allocation model, facilitated by
health care providers, staff, and ethics consultants, can help to unearth some of these underlying
issues to address the true reasons for conflict.
Based on the variable resources available to delivery organizations in the United States,
the health care resource allocation framework will provide a process that allows for decision-
making within the context of organizational constraints. This process should include
establishment of local clinical practice guidelines, methods for documentation and monitoring,
review and measurement of data, process to provide feedback, education and facilitation of
shared decision-making and the development of an environment that encourages blame-free
discussion of waste.28 These approaches can be applied at all health care delivery organizations,
but the process specifics may differ depending on organizational constrains and needs.
The varying constraints of health care delivery organizations in the United States means
that there must be flexibility to make decisions within the constraints of available resources.
Because of this, a framework to resolve conflicts of nonbeneficial treatment should be process-
driven.29 The process for making decisions about non-beneficial care should be consistent, but
there is some room for organization-specific outcome goals that addresses organization-specific
resource constraints. The resource allocation framework will have major consistencies among
institutions, however. The framework should be consistent in fair and explicit policy to support
consensus, respect and understanding when providers face conflict resolution related to
perceived nonbeneficial treatment.30 Although providers should be given autonomy of clinical
decision-making, they should be given institutional support and guidance on decisions related to
nonbeneficial treatment.
250
Physicians may face challenges to shared decision-making when patients demand a
specific treatment that is not consistent with their goals of care. The physician’s role is not to
give the patient whatever treatment they demand, but to facilitate coherent deliberation to
support the patient’s autonomy, offering reasoned judgements for what is beneficial and
appropriate.31 Organizational policy can support physicians in communicating this reasoned
judgement and providing an environment where they are empowered to make decisions that are
most closely aligned with the patient’s goals of care. The process of communication about
nonbeneficial care is a critical piece for decision-making related to nonbeneficial care. Proactive
communication among all stakeholders is needed to prevent and resolve issues related to
nonbeneficial treatment.32 This includes the physician, the patient or surrogate, the patient’s
family, and other stakeholders when relevant.
Physicians need organizational support for shared decision-making, especially when
facing diverse patient populations. Physicians need culturally effective strategies for end of life
discussions when they face barriers to discussing end of life issues with patients, especially when
communicating with patients of different ethnicity.33 Organizations can provide support for
cultural competency and communication tools so that providers can effectively and confidently
discuss relevant treatment options with patients. This will also help providers to communicate
treatment options in terms of a patient’s values, preferences and goals.
For example, providers may need support in communicating about nonbeneficial CPR.
Nonbeneficial CPR occur for many reasons including misrepresentation of CPR efficacy,
misunderstanding of prognosis, lack of empathetic and skilled communication, difficulty of
patient and family acceptance, cultural rejection of death and dying, and difficulty with meaning-
making and connection.34 In addition, there is also a bias toward action in medicine, which could
251
be a cause of the overvaluing of CPR.35 Effective shared decision-making would alleviate these
problems and prevent non-beneficial CPR. The efficacy of this intervention should be adequately
explained along with empathetic and skilled communication of prognosis. In addition,
communication to address potential cultural biases and issues of family acceptance could help to
reduce the incidence of non-beneficial CPR. Avoiding non-beneficial CPR can prevent both
patient suffering and unnecessary burden on resources to the health care system.
Another example of policy in practice to address non-beneficial care is in the context of
the ICU. When considering admission, discharge and triage for the ICU, patients real wishes
should be determined through proper advance care planning that includes a discussion of realistic
probability of cure, benefit of intervention, and dying despite the intervention, plus options of
hospice.36 Advanced care planning can ensure that patients are getting treatment that is consistent
with their goals of care, even if they get too sick to communicate these goals later. This is not
only good for patients, but also good for providers. Collaboration and workload are predictors of
burnout from ICU staff and providers who perceive nonbeneficial treatment in the ICU.37 When
patients are receiving care that is not perceived as beneficial, nurses and providers can feel an
emphasized strain and moral distress, adding to workload burden and burnout.
In addition to advanced care planning for patients, addressing nonbeneficial treatments
that are already in motion is also part of the decision-making process for equitable, value-based
resource allocation. When a treatment is causing burden and not providing significant benefit to
the patient, it could be determined as nonbeneficial care. It is ethically permissible to stop
technological impediments to death when the burdens to the patient outweigh the benefits.38
When a patient is receiving extraordinary interventions that are keeping them alive but not
252
benefiting them based on goals of care, it is ethically permissible to discontinue the
nonbeneficial treatment.
There is a need for organizational policy to prevent unnecessary patient suffering caused
by nonbeneficial care, such as incorporation of ethics committee consultation to support
physicians when facing conflicts related to nonbeneficial treatment.39 Organizational policies
will set the culture and priorities based on the resources that they have to address the needs of
their patients. Ethics committees should be part of the framework structure since they can
address specific ethical dilemmas at the bedside, as well as facilitate robust ethical delibration at
the organizational policy level. In addition, organizations should consider the resources available
to them and the options that they may provide to patients that will benefit them the most based
on their goals of care. For example, organizational leadership should establish strong connections
with palliative care services and organizational processes for beneficial palliative care transfers.40
Even if an extraordinary measure is not appropriate or beneficial to the patient anymore, it will
always be appropriate to directly care for the patient’s pain and suffering. Palliative care plays an
important role in caring for patients when more aggressive treatments are not appropriate for
their goals and preferences.
Organizations can also provide support for providers and staff through education and
training. Organizations provide support and training for patient-provider communication to
promote conversations about nonbeneficial care before a crisis arises, with the goal of reducing
communication barriers such as time constraints, inadequate provider communication skills and
training, uncertainty about prognosis, patient and surrogate anxiety and fear of inaction, and
limitations in advance care planning.41 There are many reasons why a provider may have
difficulty communicating with their patient and engaging in effective shared decision-making.
253
Health care delivery organizations play a critical role in supporting providers to give them the
tools and break down barriers to effective patient communication. Hospital policy on
nonbeneficial care can improve end of life care and resolve conflicts in decision-making.42
Policy interventions at the level of the health care delivery organization can give practical
support to health care providers and staff when assessing benefits and value of care for their
patients. This can be especially helpful when providers and staff are caring for patients at the end
of life.
End of Life Care Only patients can define the level of benefit and cost they experience from an
intervention, so their values and goals need to be at the center of this process. Although quality
of life added may be one goal of care, end-of-life care decision-making processes should
examine all benefits of treatment, not just incremental length of life added.
One of the major areas of focus at end of life is adequate and accurate assessment of
palliative care needs. There is wide variation in physician survival prediction accuracy and the
accurate identification of people nearing the end of life that could benefit from palliative care
services.43 Organizational policy and resource allocation framework can address this issue by
providing evidence-based guidance on how to approach assessment for palliative care referrals.
Conversations about transitioning to appropriate end-of-life care should occur for timely
palliative intervention when there is a high cost of care with little or no value to the patient.44
This is not only considering financial costs, but quality of life costs to the patient. The patient
may pay a high price in terms of their quality of life to gain little or no benefit from a treatment.
The physician and patient should share the probabilities of costs versus benefits of a treatment
and then make a decision based on the value weights that the patient places on both the costs and
254
benefits. This type of shared decision-making takes skilled communication practice from
physicians and staff caring for the patient. Physicians and nurses need effective communication
skills to help clarify expectations and end of life care wishes.45 The physician is the expert on
treatment options while the patient is the expert on their values and goals.
The physician should understand the goals of the patient to make appropriate
recommendations to their patient. The process of advance care planning and discussion of goals
of care should incorporate patient-centered, shared decision-making principles incorporating the
patient’s personal values and life goals.46 When these discussions happen early on in the care,
share decision-making is more effective and patients can effectively communicate their goals and
values related to end of life care. For example, when cancer patients have appropriate
information about the option for a do not resuscitate (DNR) order at the end of life, their care
quality can be improved.47 Patients need to have a meaningful conversation with their providers
about the true risks and possible benefits of an intervention, and providers need to listen carefully
to the patient’s wishes and goals of care. Health care organizational policy can help to support
this type of communication between the physician and provider by supporting shared decision-
making education and other resources needed for effective communication. This is especially
crucial at the end of life and is often needed in the intensive care unit (ICU.) Due to the
variability in end-of-life ICU care, there is a need for need for clinical, educational and policy
interventions to encourage the use of informed goals of care.48 Standardized, evidence-based
approaches to end of life decision-making in the ICU can be incorporated into the resource
allocation framework. In addition, evidence-based guidance on other types of beneficial care for
patients can help to improve outcomes and reduce costs. Timely enrollment in hospice care, for
example, can reduce health care expenditures at the end of life.49 When hospice would benefit
255
the patient the most, they should be referred to hospice rather than continuing to receive care that
is not meeting their goals.
Providers face many barriers to end-of-life decision-making. For example, cultural issues
can bring up a conflict between individualism and stereotyping since cultural and religious can
be complex and negotiated by context, political, social and existential situation.50 Providers and
staff should receive support and training on how to navigate between cultural and religious
differences of patients. Due to the significant impact that a patient’s culture and religion have on
preferences and goals of care, a provider needs to understand these patient characteristics for
effective shared decision-making. Importantly, a patient’s culture can impact preferences for end
of life treatment so the institutional policy should promote an understanding individual needs of
each patient before documenting advance care planning.51 Incorporating potential cultural and
religious preferences into advance care planning protocols can create effective support for
culturally competent, patient-centered shared decision-making. Spirituality can play a significant
role at the end of life for patients, family members and clinicians, since end of life care can bring
up questions about meaning, purpose, relationships, and destiny as well as the need to meet
spiritual goals of peace, comfort, love, and reconnection.52 Incorporating an understanding of
religion and spirituality into advance care planning can enhance the patient’s experience and
likelihood of achieving goals of care. Physicians should ensure that care is aligned with diverse
patient goals at the end of life by eliciting the patient's explanatory model of illness, addressing
the patient’s religious or spiritual values, determining the patient’s desired approach to truth
telling, understanding how the patient's family is involved in care, and negotiating cultural
conflicts when they arise.53 When a provider actively seeks to understand the patient’s
256
background and values – including culture and religious beliefs – shared decision-making will be
improved and care can be aligned with the patient’s goals of care.
An understanding of the patient’s culture and spiritual beliefs can also help the physician
to understand important aspects of the patient’s decision-making process. For example, end of
life care that is consistent with the patient’s goals and desires is not always consistent with the
conventional notion of autonomy when patients do not want to make explicit decisions about
their end of life care.54 In this case, the health care provider may need a background in cultural
competence to understand how the patient prefers to make decisions and gain a comfort with
shared decision-making in this context. In addition, some patient’s may prefer nondisclosure due
to cultural or spiritual beliefs. Physicians in the United States need cultural self-awareness and
knowledge of other cultures when patients prefer nondisclosure. Otherwise, they may face
conflict due to the professional value of truth telling.55 Organizational policy can help to support
the provider and alleviate any internal ethical dilemmas when there is conflict between personal
beliefs and patient preferences. When the health care organization has clear policy on how to
address these types of situations, and has support for physicians who face moral distress, the
decision-making process can be improved for both the provider and the patient.
Organizational policy should also promote collaboration among disciplines and
specialties within the organization. An interdisciplinary approach to communicating about end of
life care planning should be used to improve advance care planning and increase effective and
timely palliative and hospice care referrals.56 The coordination of health care delivery and
transitions of care will improve the alignment of patient goals with recommended treatments and
interventions. A multidisciplinary approach will also help physicians to address end of life care
issues in a timely manner by providing support and adequate treatment options for their patient.
257
Conversations about advance care planning should be ongoing and begin early on in a patient’s
illness because patients may lose the ability to meaningfully communicate goals as their disease
progresses.57 These ongoing conversations should incorporate relevant disciplines, and a plan for
transitions of care. A well-designed organizational policy will improve efficiency, efficacy and
quality of care for patients at the end of life consistent with both equity and value.
6b Resource Allocation Framework: Process, Methods, Assessment & Evaluation
Health care delivery organizations face difficult decisions of health care resource
allocation including but not limited to non-beneficial treatment and end-of-life care.
Organizations have a limited set of resources provided to them through policy and financing of
healthcare and must then determine how to spread those resources among the community of
patients that they serve. A resource allocation framework is needed for these organizations to
make decisions when facing scarcity of resources based on equity and value assessments. This
resource allocation framework should include process, methods, assessment and evaluation.
6bi Process & Methods The resource allocation framework should be developed at the level of the health care
delivery organization based on moral agency of health delivery organizations and associated
responsibilities toward protection and promotion health and human rights. The process for
resource allocation should incorporate the roles of the physician, patient or surrogate, and ethics
committee.
Process for Resource allocation
Resource allocation has, thus far, been primarily relegated to national and global debate
on priority setting. National agencies aim to align with the social values of a population into
health care resource allocation by fulfilling procedural justice, accountability and transparency.58
258
Although there has been significant policy debate on these issues, comprehensive policy to
address priority setting of health care resources has not been developed yet in the United States.
There have been some themes in public opinion surrounding health care priority setting, but none
have been established as universally accepted. In terms of national health care priority setting,
public opinion tends to favor – in varying weighted distribution – the young over the old, the
severely ill over the less severely ill, and those with self-induced illness or high socioeconomic
status as lower priority, larger health gain but at a diminishing rate, life extension over quality of
life enhancement - although reversed at end of life.59 Differences in public opinion and related
barriers policy have prevented a national framework for health care resource priority setting.
Although efforts toward national policy for health care priority setting is essential,
applied resource allocation at the level of the health care delivery organization is also needed.
There is a need for pragmatic resource allocation that fits within the health care delivery
organizational structure, aligned with political realities, and reflective of unique challenges that
result from the heterogeneity of health care organizations and the patient populations that they
serve.60 Even if and when a national policy framework to set priorities in health care is
developed, health care delivery organizations will still be left to implement these policies within
the unique constraints they face based on their patient population, payer mix and geographic
barriers. Health care delivery is not value neutral and health care leaders should be expected to
carry out national policies while incorporating the moral objectives of the delivery
organization.61 Therefore, an ethical resource allocation framework is needed for health care
delivery organization now and will continue to be needed into the future.
This framework will need to give specific guidance for decision-making processes, but
allow for context-specific decisions based on characteristics of the organization’s patient
259
population. For example, an ethical framework for resource allocation should consider the
influence of historical patterns and political pressure, including structures, processes, attitudes,
behaviors and measurable outcomes.62 Due to the high level of population diversity in the united
states, these patterns will vary between different delivery organizations.
An organizational resource allocation framework should incorporate both bedside
decision-making and organizational policy development, as well as a forum where the
community and stakeholders can participate in case review. Once community input has been
gathered, the resource policy committee will engage in a decision-making process that
incorporates analysis, policy development, and education (Appendix B.) The committee will
circle back with the community for commentary before implementing amended or new policy.
This process will follow a cyclical model based on for key process areas: implement, report,
evaluation and assess. (Appendix A.) This model will incorporate the two major levels of the
resource allocation decisions – the organizational policy and bedside decision-making levels.
Resource allocation falls under two major decision-making levels: microallocation decisions,
which are focused on individual persons and macroallocation decisions, such as hospital
budgeting of spending that is available.63 An effective health care delivery resource allocation
framework will need to incorporate both of these levels.
The policy and bedside level of the framework will bet inter-related as bedside decision-
making will inform policy and vice-versa. Education will be a significant connector of these two
levels. The education piece should include didactic approaches to social and health equality,
including the development of empathy and critical self-reflection, that cultivates a lifelong
learning process of culturally sensitive clinical interaction with a recognition of the narrative and
260
history of other cultural groups.64 Education within the framework will focus on supporting
shared decision-making and culturally competent patient-centered care.
The organizational policy level will be essential to provide guidance and support for
frontline and bedside decision-making when providers and staff face resource limitations.
Organizational guidance can help with ethical front-line decision-making that avoids
rationalization and denial and instead uses reason combined with empathy.65 This guidance can
help providers to avoid bias in bedside decision-making. Providers will face a lower level of
moral distress and not be forced to rationalize unethical decisions. It will also support effective
shared decision-making and focus on patient goals, preferences and values.
Shared decision-making will be a focus at both the bedside and organizational policy
level of the framework. Shared decision-making is needed to determine the true needs of
patients, and to differentiate between patient needs and desires then comparing benefits and tying
decisions to evidence-based medicine.66 Policy will support providers and staff to engage in
shared decision-making through education and communication tools. Physicians at the bedside
will implement shared decision-making and provide feedback to policy to improve this process
into the future. This feedback loop and connection between the bedside and high-level policy
will be essential for the success of the framework.
The connection between frontline or bedside care and the policy component of the
framework can be supported by incorporating physician leadership in policy decision-making
processes. Physician leadership can help to bridge gaps between clinicians and administrators,
create a unified health care agenda, implement patient-centered improvements, and facilitate
training for clinicians to appreciate the constraints of financial, political and bureaucratic
obligations.67 Involving physician leadership in policy development will ensure that decisions are
261
clinically sound and lend credibility to the policy-making piece of the process. It will also assist
with communication between the policy development and implementation of policy at the
bedside. The policy component of the decision-making process will incorporate evidence-based
decision-making shared decision-making processes that provide guidance for physicians at the
bedside. This will include evidence and research to support equity of care. Effectiveness
research can support equity in treatments to those with equal morally relevant needs, and be used
to support education and training.68 Policy that is within the framework but specific to the health
care delivery organization will be responsive to specific resources available to the organization
balanced with the morally relevant needs of the organization’s patient population.
Cultural competence will be an important aspect of policy decision-making and
implementation within the framework. Cultural competence can improve effective
communication and quality of care for patients with diverse sociocultural backgrounds, reducing
racial and ethnic disparities that are both unjust and costly.69 The incorporation of culturally
competent policy development and cultural competence as part of education for providers and
staff will support equitable value-based resource allocation decisions. Cultural competence helps
providers to understand patient goals and preference and to engage in effective communication
with patients. In addition, beneficial tools and approaches can be incorporated into the
framework as they become relevant. For example, technology tools could be considered, such as
the use of telemedicine, if they can improve the efficiency of resource allocation within the
health care delivery organization.70 As new tools such as technology solutions become available,
health care resource allocation policy development can assess and utilize as appropriate.
The connection between organizational policy decisions and bedside decision-making is
essential for an effective resource allocation process at the level of the health care delivery
262
organization. Consequences of macro-level decisions should be monitored, and professional
integrity should be protected.71 Incorporating both organizational policy and bedside decision-
making into the resource allocation decision-making process will protect the integrity of both
physicians and patients. The roles of the provider, patient (or surrogate) and ethics committee
will be essential for an effective resource allocation framework process.
Roles of the Provider, Patient and Ethics Committee The provider, patient and ethics committee will all have crucial roles in the resource
allocation framework. The physician-patient interaction should be based on shared decision-
making and mutual respect and aligned with the goal of patient-centered care. The ethics
committee will support and mediate the shared decision-making process when there are
significant barriers or value conflicts between the physician and the patient.
The shared decision-making process is at the foundation of the resource allocation
framework, from both the bedside and policy support perspective. Shared decision-making can
help patients and surrogates more effectively express preferences and understand options more
clearly.72 Shared decision-making also helps physicians. Physicians may engage in shared
decision-making to share uncertainty and avoid interventions or tests with little or no benefit.73
There may be many possible options to treat the patient. Without understanding the patient’s
values and goals, it will be difficult for the physician to advise on which option would be the
most beneficial. It will also help physicians to connect meaning to the treatment that they provide
since it will be clearly aligned with patient benefit. When physicians feel that their work is
meaningful, patient-physician interaction are improved and physician burnout is decreased.74
Both physician and patient satisfaction can then be increased with effective shared decision-
making approaches.
263
Share decision-making is facilitated by effective physician communication. Physicians
should elicit patient’s preferences, assess the evidence-based information that patients need, then
arrive at a treatment decision together with the patient, based on the best available evidence
weighted by the patient’s values and preferences.75 The physician is the clinical expert on
treatment options, while the patient is the expert on their own values and goals. The physician
must help the patient to define and express their goals of care, and then match options for
treatment to those expressed goals.
Share decision-making is especially crucial in situations where the solution to meeting a
patient’s goal is not obvious, or where a patient’s goals are impossible to achieve. When facing
ethically contentious decisions, physicians should assess context-specific moral norms then lead
a participatory and inclusive discussion with democratic decision procedures, rather than
focusing solely on the opinion of traditional elites.76 The physician, in other words, must
incorporate the context of the decision-making for the patient in front of them. Medical ethics,
distinct from everyday ethics, incorporates a moral commitment decision-making informed by
professional rather than personal moral judgement – meaning that others should not be asked to
bear the weight of a physician’s personal convictions.77 Physicians must incorporate the patient’s
values and goals, rather than a paternalistic decision based on the physicain’s own personal
values. Organizational policy can support physicians in this process through training and
development of nonclinical competencies. Nonclinical competencies should be included in
physician training and practice-based learning, including communication skills,
professionalism.78 These skills will help the physician to assess the benefit versus the costs to the
patient of a particular treatment option by understanding the patient’s goals and how they can
address situations of conflict. Shared decision-making is not always easy. Obstacles to shared
264
decision-making include the inherent uncertainty of most medical decisions, lack of consistency,
and strength and quality of clinical evidence.79 It can be difficult to match a patient’s goals with a
suggested treatment when the outcomes of a treatment are not certain. Health care delivery
organizations can support physicians facing these uncertainties by developing evidence-based,
decision-making guidelines when possible. For example, physician education and palliative care
guidelines can support patient and family-centered end-of-life care.80 Support and guidance from
the resource allocation framework can alleviate some of the moral burden that physicians may
face from decision-making uncertainty.
Frontline staff also play an important role in the development of the resource allocation
framework. Nurses require organizational enact decisions that benefit the patients they care for.
Nursing requires integrity and courage to advocate for patients, intervene during distressing
situations, innovate practices to promote individualized care, question physician orders when
needed, and advocate for safe conditions.81 Creating a culture where nurses are able to engage
with the resource allocation process will benefit patients and contribute to efficient and
efficacious patient care.
In addition, hospital policy should support the surrogate decision-making process
including life-prolonging decisions that require high-intensity care with a high risk of death.82
Surrogates face many barriers and challenges to shared excision-making, especially during
difficult end-of life decisions. Surrogates can face conflict from family dynamics and unspoken
filial expectations, so physicians should facilitate communication to address surrogate coping
and support surrogate decision-making.83 The shared decision-making process can support
surrogates in difficult decision-making, and help to clarify goals of care for the provider.
265
When there are conflicts in the shared decision-making process that the provider and
patient or surrogate cannot resolve, clinical ethics committees can provide valuable facilitation
and moderating services. Clinical ethics committees can help with resource allocation decisions
by raising awareness of ethical aspects of resource allocations, bridging clinical practice with
higher-level decisions- and promoting fair resource allocation and stakeholder rights and
interests.84 Clinical ethics committees trained in morally relevant criteria can help to guide
patients and physicians to make decisions together when there are conflicts of value.
The resource allocation framework will need to facilitate a close relationship between
organizational policy and bedside decision-making. In addition, assessment and evaluation that
incorporates a close relationship with the community that the delivery organization serves.
6bii Assessment & Evaluation
The resource allocation framework will include a robust assessment and evaluation
component. This component will facilitate community involvement in both initial needs
assessment and evaluation of established policy for resource allocation.
Assessing Resource Allocation
The assessment process will include defining the patient’s goals, determining the
patient’s tolerable costs (such as quality of life measures or complications,) and ensuring
stakeholder understanding of patient goals and values. When specific policy needs to be
developed based on scarcity of resources, a general assessment will be performed of the benefits
of the intervention and which types of patients would benefit from the intervention. The process
will be transparent with an appeals process. Resource allocation should incorporate evidence-
based care including guideline creation, guideline adherence, assessing quality measures and
guidelines, outcomes research and safety.85 The assessment of resource allocation policy will
266
focus on the development of guidelines taking bedside decision-making challenges to the policy
development committee responding to these challenges.
Stakeholder deliberation is an important part of the resource allocation process since
value judgements and preferences may vary between various stakeholders.86 The assessment of
policy priorities will incorporate stakeholders and community members that the health care
delivery organization serves. Prior to the development of policy, the community and stakeholders
will be invited to a designated forum for open resource allocation discussion. Problems that have
been identified at the bedside will be presented and discussed at this forum, and community input
will be documented. Since health care is – at least partially – a publicly financed community
commodity, allocation of resources should incorporate relative social value estimates, social
norms, and citizen values.87 The community forum will be a venue for the community to express
social values and give feedback on allocation decisions that affect them. Values of the
communities that health delivery organizations serve should be incorporated into policy
development, although the weight of community input should be carefully considered88 The
community feedback will be documented for further assessment by the resource allocation
committee. For example, health gains of special interest may be emphasized by the community
but not be aligned with equity of for the population. Health gains may be assessed based on a
reference point where health gains below the reference point are weighted more than health gains
above a reference point.89 If incorporating prioritization for the worse off, it is essential to define
what "worse off" means, such as preferring those with fewer lifetime Quality-Adjusted Life
Years (QALYs.)90 Different types of ethics reviews might be needed for different contexts within
the health delivery organization.91
267
The policy committee will deliberate this and other key points, considering community
feedback in their assessment. Public engagement will be important to the framework since it can
help to create legitimacy, transparency and accountability for resource allocation policy by
developing popular support, identifying points of agreement and disagreement, identifying value
judgement and normative aspects of the decision, and garnering public trust in the decision-
making process.92 The community of the health care delivery organization will be invited to
policy discussions in the assessment phase, and also in the policy evaluation phase.
Evaluating Resource Allocation Organizational Policy The framework will be evaluated for effectiveness. After the resource allocation policy
committee has gathered and assessed community feedback, they will develop an ethical resource
allocation policy for the issue discussed. Policy committee assessment will include key ethical
considerations of: distributive justice, procedural justice, interpersonal justice, informational
justice, social responsibility and respect for human vulnerability. The committee will use the
process of accountability for reasonableness when developing the policy and develop associated
education necessary for policy implementation. Once this has occurred, policy will be ready for
stakeholder and community evaluation.
Evaluation methodology should be transparent and incorporate community input. There
is a need for a clear method to evaluate a resource allocation framework, which could
incorporate efficiency and health outcome data that maximizes overall health but also addresses
distribution of benefits and process indicators for allocation.93 This resource allocation criteria
can be mapped out into buckets of feasibility, health level, health distribution, responsiveness,
social and financial risk protection, and improved efficiency.94 Community feedback will be
268
assessed within these buckets, and compared to the committees assessment of justice, social
responsibility, and respect for human vulnerability.
Community evaluation will be supported by any relevant data that would help in the
assessment of the policy draft. In the current climate of accountability, data is needed to provide
effectiveness information to consumers and stakeholders.95 Stakeholders should be given all of
the information that they need to effectively evaluate each proposed policy.
Involvement of community members and other stakeholders will not only provide perspectives
that the policy committee may not have considered, but it will also create an environment of trust
between the health delivery organization and the community. Legitimacy of priority setting can
be improved by managing external stakeholder relationships, including government, citizens, the
media and other external interest groups.96 By including the community that the delivery
organization serves in policy evaluation, the priority setting process will be legitimized through
transparency and accountability of the health care delivery organization.
External review is also helpful for the resource allocation committee to establish
outcomes that are important to the key stakeholders, which are the community of patients that the
health care delivery organization serves. Like other program evaluation processes in health care,
the resource allocation committee should be subject to an evaluation process and continuous
process improvement. Program evaluation should include a systematic process to evaluate
established outcomes and determine the possible need for program revision.97 Including
community evaluation in the cycle of resource allocation decisions will provide opportunity for
continuous process improvement. It will also allow the committee to respond to changing
community needs and demands when ethically relevant. In addition, program evaluation in
health care can facilitate individual, team and organizational learning.98 The organization can
269
learn what their community needs, giving a voice to those who are directly impacted by resource
allocation decisions.
The community who is most affected by decisions that the health care delivery
organization makes should also be privy to the normative allocation criteria developed by the
committee. The dimensions of equality that are normatively relevant need to be clearly defined
since implicitly unfair allocation will occur without the employment of explicit allocation
criteria.99 When the community is aware of the resource allocation decisions, they can act as
their own advocates to protect against implicit bias in decision-making. Decision-making
processes will be transparent and patients will be empowered with that information, helping them
to become active members in the shared decision-making process.
The community can be given criteria to evaluate resource allocation decisions, and also
the committee process itself. The CDC recommends that a program evaluation framework
includes standards of program utility, feasibility, propriety, and accuracy through a cycle of
describing the program, focusing evaluation design, gathering credible evidence, justifying
conclusions, ensuring and sharing lessons, and engaging stakeholders.100 The committee can
incorporate feedback about specific policy decisions but also about the decision-making process
of the committee itself, as well as the implementation methodology at the bedside.
An ethically sound resource allocation framework is needed for health care organizations
when there are not enough resources to respond to patient demand. This resource allocation
framework must focus on the process that can respond to specific resources available as
compared to the organization’s patient characteristics, payer mix, and other organization-specific
barriers or relevant characteristics. A redefinition of rationing cannot overcome its baggage and
this term can create unnecessary polarization and argument about rationing rather than address
270
root of the problem.101 Still, an approach to address limited health care resources is needed.
Although an approach at the national policy level is important, a framework at the level of the
health care delivery organization is also needed. This resource allocation framework will fulfil
the responsibilities that organizations have, based on their moral agency, to protect the right to
health.
1 Ahlstrom‐Vij, Kristoffer. "Procedural Justice and the Problem of Intellectual Deference." Episteme 11, no. 4 (Dec 2014): 423‐42.
2 Krehbiel, Patricia J., and Russell Cropanzano. "Procedural Justice, Outcome Favorability and Emotion." Social Justice Research 13, no. 4 (December 2000): 339‐60.
3 Haghighinezhad, G., F. Atashzadeh‐Shoorideh, T. Ashktorab, J. Mohtashami, and M. Barkhordari‐Sharifabad. "Relationship between Perceived Organizational Justice and Moral Distress in Intensive Care Unit Nurses." Nurs Ethics (Jan 1 2017): 969733017712082.
4 Hegtvedt, Karen A., and Jody Clay‐Warner. Justice. Bradford, UNITED KINGDOM: Emerald Group Publishing Limited, 2008.
5 Knight, Carl, and Andreas Albertsen. "Rawlsian Justice and Palliative Care." Bioethics 29, no. 8 (Oct 2015 2015‐09‐24 2015): 536‐42. 6 Day, Lisa. "Distributive Justice and Personal Responsibility for Choices About Health." [In English]. American Journal of Critical Care 15, no. 1 (Jan 2006): 96‐8.
7 Braveman, P. "What Are Health Disparities and Health Equity? We Need to Be Clear." Public Health Rep 129 Suppl 2 (Jan‐Feb 2014): 5‐8.
8 Braveman, P. "What Is Health Equity: And How Does a Life‐Course Approach Take Us Further toward It?" Matern Child Health J 18, no. 2 (Feb 2014): 366‐72.
9 Woods, L. L., 2nd, M. Shaw‐Ridley, and C. A. Woods. "Can Health Equity Coexist with Housing Inequalities? A Contemporary Issue in Historical Context." Health Promot Pract 15, no. 4 (Jul 2014): 476‐82.
10 Bierhoff, H.W., R.L. Cohen, and J. Greenberg. Justice in Social Relations. Springer US, 2013. 211‐219 11 Jecker, Nancy S. "Justice." In Bioethics, edited by Bruce Jennings, 1774‐84. Farmington Hills, MI: Macmillan Reference USA, 2014.
12 Forman, L. "What Do Human Rights Bring to Discussions of Power and Politics in Health Policy and Systems?". Glob Public Health (Dec 13 2017): 1‐14.
13 Sreenivasan, G. "Health Care and Human Rights: Against the Split Duty Gambit." Theor Med Bioeth 37, no. 4 (Aug 2016): 343‐64.
14 Jan, S. "Proceduralism and Its Role in Economic Evaluation and Priority Setting in Health." Soc Sci Med 108 (May 2014): 257‐61.
15 Collie, Therese, Bradley Graham, and Beverley A. Sparks. "Fair Process Revisited: Differential Effects of Interactional and Procedural Justice in the Presence of Social Comparison Information." Journal of Experimental Social Psychology 38, no. 6 (Nov 2002): 545‐55.
16 Brock, D. W. "Ethical and Value Issues in Insurance Coverage for Cancer Treatment." Oncologist 15 Suppl 1 (2010): 36‐42.
17 Zhang, Yuan, Coello Pablo Alonso, Jan Brożek, Wojtek Wiercioch, Itziar Etxeandia‐Ikobaltzeta, Elie A. Akl, Joerg J. Meerpohl, et al. "Using Patient Values and Preferences to Inform the Importance of Health Outcomes in Practice Guideline Development Following the Grade Approach." Health and Quality of Life Outcomes 15 (2017).
18 Marckmann, G., and J. In der Schmitten. "Financial Toxicity of Cancer Drugs: Possible Remedies from an Ethical Perspective." Breast Care (Basel) 12, no. 2 (May 2017): 81‐85.
271
19 de Groot, F., S. Capri, J. C. Castanier, D. Cunningham, B. Flamion, M. Flume, H. Herholz, et al. "Ethical Hurdles in the Prioritization of Oncology Care." Appl Health Econ Health Policy 15, no. 2 (Apr 2017): 119‐26.
20 Ottersen, T., O. Maestad, and O. F. Norheim. "Lifetime Qaly Prioritarianism in Priority Setting: Quantification of the Inherent Trade‐Off." Cost Eff Resour Alloc 12, no. 1 (Jan 14 2014): 2.
21 Rutstein, S. E., J. T. Price, N. E. Rosenberg, S. M. Rennie, A. K. Biddle, and W. C. Miller. "Hidden Costs: The Ethics of Cost‐Effectiveness Analyses for Health Interventions in Resource‐Limited Settings." Glob Public Health 12, no. 10 (Oct 2017): 1269‐81.
22 Grill, K. "Incentives, Equity and the Able Chooser Problem." J Med Ethics 43, no. 3 (Mar 2017): 157‐61. 23 Addario, Bonnie J., Ana Fadich, Jesme Fox, Linda Krebs, Deborah Maskens, Kathy Oliver, Erin Schwartz, Gilliosa Spurrier‐Bernard, and Timothy Turnham. "Patient Value: Perspectives from the Advocacy Community." Expectations 21, no. 1 (Feb 2018): 57‐63.
24 Wilkinson, D., and J. Savulescu. "Cost‐Equivalence and Pluralism in Publicly‐Funded Health‐Care Systems." Health Care Anal (Jan 6 2017).
25 Norheim, O. F., R. Baltussen, M. Johri, D. Chisholm, E. Nord, D. Brock, P. Carlsson, et al. "Guidance on Priority Setting in Health Care (Gps‐Health): The Inclusion of Equity Criteria Not Captured by Cost‐Effectiveness Analysis." Cost Eff Resour Alloc 12 (2014): 18.
26 Moye, Jennifer, Casey Catlin, Jennifer Kwak, Erica Wood, and Pamela B. Teaster. "Ethical Concerns and Procedural Pathways for Patients Who Are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice." HEC Forum 29, no. 2 (Jun 2017): 171‐89.
27 Burnham, J. M., F. Meta, V. Lizzio, E. C. Makhni, and K. J. Bozic. "Technology Assessment and Cost‐Effectiveness in Orthopedics: How to Measure Outcomes and Deliver Value in a Constantly Changing Healthcare Environment." Curr Rev Musculoskelet Med 10, no. 2 (Jun 2017): 233‐39.
28 Nelson, W. A. "The Ethics of Avoiding Nonbeneficial Healthcare: Unnecessary Treatment Has Both Financial and Moral Implications." Healthc Exec 27, no. 6 (Nov‐Dec 2012): 48, 50‐1.
29 Olmstead, J. A., and M. D. Dahnke. "The Need for an Effective Process to Resolve Conflicts over Medical Futility: A Case Study and Analysis." Crit Care Nurse 36, no. 6 (Dec 2016): 13‐23.
30 Nelson, C. M., and B. A. Nazareth. "Nonbeneficial Treatment and Conflict Resolution: Building Consensus." Perm J 17, no. 3 (Summer 2013): 23‐7.
31 Brett, Allan S. M. D., and Laurence B. PhD McCullough. "Addressing Requests by Patients for Nonbeneficial Interventions." JAMA 307, no. 2 (2012 Jan 11): 149‐50.
32 Armstrong, Matthew H. M. D. M. A., Joseph K. M. D. J. D. Poku, and Christopher M. M. D. J. D. Burkle. "Medical Futility and Nonbeneficial Interventions: An Algorithm to Aid Clinicians." Mayo Clinic Proceedings 89, no. 12 (Dec 2014): 1599‐607.
33 Periyakoil, Vyjeyanthi S., Eric Neri, and Helena Kraemer. "No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End‐of‐Life Conversations with Diverse Patients." PLoS One 10, no. 4 (Apr 2015).
34 Rosenberg, L. B., and D. Doolittle. "Learn and Live?: Understanding the Cultural Focus on Nonbeneficial Cardiopulmonary Resuscitation (Cpr) as a Response to Existential Distress About Death and Dying." Am J Bioeth 17, no. 2 (Feb 2017): 54‐55.
35 Jecker, N. S. "Doing What We Shouldn't: Medical Futility and Moral Distress." Am J Bioeth 17, no. 2 (Feb 2017): 41‐43.
36 Nates, J. L., M. Nunnally, R. Kleinpell, S. Blosser, J. Goldner, B. Birriel, C. S. Fowler, et al. "Icu Admission, Discharge, and Triage Guidelines: A Framework to Enhance Clinical Operations, Development of Institutional Policies, and Further Research." Crit Care Med 44, no. 8 (Aug 2016): 1553‐602.
37 Schwarzkopf, D., H. Ruddel, D. O. Thomas‐Ruddel, J. Felfe, B. Poidinger, C. T. Matthaus‐Kramer, C. S. Hartog, and F. Bloos. "Perceived Nonbeneficial Treatment of Patients, Burnout, and Intention to Leave the Job among Icu Nurses and Junior and Senior Physicians." Crit Care Med 45, no. 3 (Mar 2017): e265‐e73.
38 DeMartino, E. S., S. E. Wordingham, J. M. Stulak, B. A. Boilson, K. R. Fuechtmann, N. Singh, D. P. Sulmasy, O. E. Pajaro, and P. S. Mueller. "Ethical Analysis of Withdrawing Total Artificial Heart Support." Mayo Clin Proc 92, no. 5 (May 2017): 719‐25.
39 Morata, L. "An Evolutionary Concept Analysis of Futility in Health Care." [In eng]. J Adv Nurs (Jan 19 2018). 40 Jukic, M., L. Saric, I. Prkic, and L. Puljak. "Medical Futility Treatment in Intensive Care Units." [In eng]. Acta Med Acad 45, no. 2 (Nov 2016): 135‐44.
272
41 Cooper, Z., A. Courtwright, A. Karlage, A. Gawande, and S. Block. "Pitfalls in Communication That Lead to Nonbeneficial Emergency Surgery in Elderly Patients with Serious Illness: Description of the Problem and Elements of a Solution." Ann Surg 260, no. 6 (Dec 2014): 949‐57.
42 Joseph, R. "Hospital Policy on Medical Futility ‐ Does It Help in Conflict Resolution and Ensuring Good End‐of‐Life Care?" Ann Acad Med Singapore 40, no. 1 (Jan 2011): 19‐25.
43 White, N., N. Kupeli, V. Vickerstaff, and P. Stone. "How Accurate Is the 'Surprise Question' at Identifying Patients at the End of Life? A Systematic Review and Meta‐Analysis." BMC Med 15, no. 1 (Aug 2 2017): 139.
44 Margolis, B., L. Chen, M. K. Accordino, G. Clarke Hillyer, J. Y. Hou, A. I. Tergas, W. M. Burke, et al. "Trends in End‐of‐Life Care and Health Care Spending in Women with Uterine Cancer." Am J Obstet Gynecol 217, no. 4 (Oct 2017): 434.e1‐34.e10.
45 Walczak, A., P. N. Butow, M. H. Tattersall, P. M. Davidson, J. Young, R. M. Epstein, D. S. Costa, and J. M. Clayton. "Encouraging Early Discussion of Life Expectancy and End‐of‐Life Care: A Randomised Controlled Trial of a Nurse‐Led Communication Support Program for Patients and Caregivers." Int J Nurs Stud 67 (Feb 2017): 31‐40.
46 Myers, J. "Measuring Quality of End‐of‐Life Communication and Decision‐Making: Do We Have This Right?" Cmaj 189, no. 30 (Jul 31 2017): E978‐e79.
47 Liang, Y. H., C. H. Wei, W. H. Hsu, Y. Y. Shao, Y. C. Lin, P. C. Chou, A. L. Cheng, and K. H. Yeh. "Do‐Not‐Resuscitate Consent Signed by Patients Indicates a More Favorable Quality of End‐of‐Life Care for Patients with Advanced Cancer." Support Care Cancer 25, no. 2 (Feb 2017): 533‐39.
48 Curtis, J. R., R. A. Engelberg, and J. M. Teno. "Understanding Variability of End‐of‐Life Care in the Icu for the Elderly." Intensive Care Med 43, no. 1 (Jan 2017): 94‐96.
49 Zuckerman, R. B., S. C. Stearns, and S. H. Sheingold. "Hospice Use, Hospitalization, and Medicare Spending at the End of Life." J Gerontol B Psychol Sci Soc Sci 71, no. 3 (May 2016): 569‐80.
50 Schweda, M., S. Schicktanz, A. Raz, and A. Silvers. "Beyond Cultural Stereotyping: Views on End‐of‐Life Decision Making among Religious and Secular Persons in the USA, Germany, and Israel." BMC Med Ethics 18, no. 1 (Feb 17 2017): 13.
51 Ohr, S., S. Jeong, and P. Saul. "Cultural and Religious Beliefs and Values, and Their Impact on Preferences for End‐of‐Life Care among Four Ethnic Groups of Community‐Dwelling Older Persons." J Clin Nurs 26, no. 11‐12 (Jun 2017): 1681‐89.
52 Swinton, M., M. Giacomini, F. Toledo, T. Rose, T. Hand‐Breckenridge, A. Boyle, A. Woods, et al. "Experiences and Expressions of Spirituality at the End of Life in the Intensive Care Unit." Am J Respir Crit Care Med 195, no. 2 (Jan 15 2017): 198‐204.
53 Partain, D. K., C. Ingram, and J. J. Strand. "Providing Appropriate End‐of‐Life Care to Religious and Ethnic Minorities." Mayo Clin Proc 92, no. 1 (Jan 2017): 147‐52.
54 Romo, R. D., T. A. Allison, A. K. Smith, and M. I. Wallhagen. "Sense of Control in End‐of‐Life Decision‐Making." J Am Geriatr Soc 65, no. 3 (Mar 2017): e70‐e75.
55 Rising, M. L. "Truth Telling as an Element of Culturally Competent Care at End of Life." J Transcult Nurs 28, no. 1 (Jan 2017): 48‐55.
56 Nedjat‐Haiem, F. R., I. V. Carrion, K. Gonzalez, K. Ell, B. Thompson, and S. I. Mishra. "Exploring Health Care Providers' Views About Initiating End‐of‐Life Care Communication." Am J Hosp Palliat Care 34, no. 4 (May 2017): 308‐17.
57 Hutchison, Lauren A., Donna S. Raffin‐Bouchal, Charlotte A. Syme, Patricia D. Biondo, and Jessica E. Simon. "Readiness to Participate in Advance Care Planning: A Qualitative Study of Renal Failure Patients, Families and Healthcare Providers." Chronic Illness 13, no. 3 (Sep 2017): 171‐87.
58 Landwehr, C., and D. Klinnert. "Value Congruence in Health Care Priority Setting: Social Values, Institutions and Decisions in Three Countries." Health Econ Policy Law 10, no. 2 (Apr 2015): 113‐32.
59 Gu, Y., E. Lancsar, P. Ghijben, J. R. Butler, and C. Donaldson. "Attributes and Weights in Health Care Priority Setting: A Systematic Review of What Counts and to What Extent." Soc Sci Med 146 (Dec 2015): 41‐52.
60 Cromwell, I., S. J. Peacock, and C. Mitton. "'Real‐World' Health Care Priority Setting Using Explicit Decision Criteria: A Systematic Review of the Literature." BMC Health Serv Res 15 (Apr 17 2015): 164.
61 Kekewich, M., J. Landry, and V. Roth. "How Should Health Leaders Approach Morally Contentious Policy Issues?" Healthc Manage Forum 31, no. 1 (Jan 2018): 29‐31.
273
62 Smith, N., C. Mitton, W. Hall, S. Bryan, C. Donaldson, S. Peacock, J. L. Gibson, and B. Urquhart. "High Performance in Healthcare Priority Setting and Resource Allocation: A Literature‐ and Case Study‐Based Framework in the Canadian Context." Soc Sci Med 162 (Aug 2016): 185‐92.
63 Kilner, John F. "Healthcare Resources, Allocation Of: I. Macroallocation." In Encyclopedia of Bioethics, edited by Stephen G. Post, 1098‐107. New York: Macmillan Reference USA, 2004.
64 Wilson‐Mitchell, K., and M. Handa. "Infusing Diversity and Equity into Clinical Teaching: Training the Trainers." J Midwifery Womens Health 61, no. 6 (Nov 2016): 726‐36.
65 Decety, J., and J. M. Cowell. "Empathy, Justice, and Moral Behavior." AJOB Neurosci 6, no. 3 (2015): 3‐14. 66 Gustavsson, E., and L. Sandman. "Health‐Care Needs and Shared Decision‐Making in Priority‐Setting." Med Health Care Philos 18, no. 1 (Feb 2015): 13‐22.
67 Zhang, M., J. Volovetz, and M. Teo. "Surgeon Adherence to Medical Ethics as Contingent on Their Leadership in the Changing Economics of Health Care." World Neurosurg 104 (Aug 2017): 979‐80.
68 Rogers, W., C. Degeling, and C. Townley. "Equity under the Knife: Justice and Evidence in Surgery." Bioethics 28, no. 3 (Mar 2014): 119‐26.
69 Betancourt, J. R., J. Corbett, and M. R. Bondaryk. "Addressing Disparities and Achieving Equity: Cultural Competence, Ethics, and Health‐Care Transformation." Chest 145, no. 1 (Jan 2014): 143‐48.
70 Yeow, Adrian, and Kim Huat Goh. "Work Harder or Work Smarter? Information Technology and Resource Allocation in Healthcare Processes." MIS Quarterly 39, no. 4 (Dec 2015): 763.
71 Nordhaug, M., and P. Nortvedt. "Justice and Proximity: Problems for an Ethics of Care." Health Care Anal 19, no. 1 (Mar 2011): 3‐14.
72 Wilson, M. E., A. Akhoundi, A. K. Krupa, R. F. Hinds, J. M. Litell, O. Gajic, and K. Kashani. "Development, Validation, and Results of a Survey to Measure Understanding of Cardiopulmonary Resuscitation Choices among Icu Patients and Their Surrogate Decision Makers." BMC Anesthesiol 14 (Mar 8 2014): 15.
73 Schoenfeld, E. M., S. L. Goff, T. R. Elia, E. R. Khordipour, K. E. Poronsky, K. A. Nault, P. K. Lindenauer, and K. M. Mazor. "The Physician‐as‐Stakeholder: An Exploratory Qualitative Analysis of Physicians' Motivations for Using Shared Decision Making in the Emergency Department." Acad Emerg Med 23, no. 12 (Dec 2016): 1417‐27.
74 Dobler, C. C., C. P. West, and V. M. Montori. "Can Shared Decision Making Improve Physician Well‐Being and Reduce Burnout?" Cureus 9, no. 8 (Aug 27 2017): e1615.
75 Tamirisa, N. P., J. S. Goodwin, A. Kandalam, S. K. Linder, S. Weller, S. Turrubiate, C. Silva, and T. S. Riall. "Patient and Physician Views of Shared Decision Making in Cancer." Health Expect 20, no. 6 (Dec 2017): 1248‐53.
76 Salloch, Sabine. "Same Same but Different: Why We Should Care About the Distinction between Professionalism and Ethics." [In English]. BMC Medical Ethics 17 (2016).
77 Rhodes, Rosamond. "The Professional Responsibilities of Medicine." In The Blackwell Guide to Medical Ethics, 71‐87: Blackwell Publishing Ltd, 2008.
78 Sinha, Shashank S., and Michael W. Cullen. "Mentorship, Leadership, and Teamwork." Journal of the American College of Cardiology 66, no. 9 (2015): 1079‐82.
79 Smith, Quentin W., Richard L. Street, Robert J. Volk, and Michael Fordis. "Differing Levels of Clinical Evidence: Exploring Communication Challenges in Shared Decision Making." Medical Care Research and Review 70, no. 1 suppl (February 2013): 3S‐13S.
80 Visser, M., L. Deliens, and D. Houttekier. "Physician‐Related Barriers to Communication and Patient‐ and Family‐Centred Decision‐Making Towards the End of Life in Intensive Care: A Systematic Review." Crit Care 18, no. 6 (Nov 18 2014): 604.
81 Hawkins, Sara F. M. S. N. R. N., and Janice PhD PhD Faan Morse. "The Praxis of Courage as a Foundation for Care." Journal of Nursing Scholarship 46, no. 4 (Jul 2014): 263‐70.
82 Torke, A. M., G. A. Sachs, P. R. Helft, K. Montz, S. L. Hui, J. E. Slaven, and C. M. Callahan. "Scope and Outcomes of Surrogate Decision Making among Hospitalized Older Adults." JAMA Intern Med 174, no. 3 (Mar 2014): 370‐7.
83 Su, C. T., R. D. McMahan, B. A. Williams, R. K. Sharma, and R. L. Sudore. "Family Matters: Effects of Birth Order, Culture, and Family Dynamics on Surrogate Decision‐Making." J Am Geriatr Soc 62, no. 1 (Jan 2014): 175‐82.
84 Magelssen, M., I. Miljeteig, R. Pedersen, and R. Forde. "Roles and Responsibilities of Clinical Ethics Committees in Priority Setting." BMC Med Ethics 18, no. 1 (Dec 1 2017): 68.
85 Robertson‐Preidler, Joelle, Nikola Biller‐Andorno, and Tricia J. Johnson. "What Is Appropriate Care? An Integrative Review of Emerging Themes in the Literature." BMC Health Services Research 17 (2017).
274
86 Severin, F., W. Hess, J. Schmidtke, A. Muhlbacher, and W. Rogowski. "Value Judgments for Priority Setting Criteria in Genetic Testing: A Discrete Choice Experiment." Health Policy 119, no. 2 (Feb 2015): 164‐73.
87 Costa‐Font, J., J. R. Forns, and A. Sato. "Participatory Health System Priority Setting: Evidence from a Budget Experiment." Soc Sci Med 146 (Dec 2015): 182‐90.
88 Wiseman, Virginia L. "Inclusiveness in the Value Base for Health Care Resource Allocation." [In English]. Social Science & Medicine 108 (May 2014): 252‐56.
89 Wouters, S., N. J. van Exel, K. I. Rohde, and W. B. Brouwer. "Are All Health Gains Equally Important? An Exploration of Acceptable Health as a Reference Point in Health Care Priority Setting." Health Qual Life Outcomes 13 (Jun 10 2015): 79.
90 Ottersen, T. "Lifetime Qaly Prioritarianism in Priority Setting." J Med Ethics 39, no. 3 (Mar 2013): 175‐80. 91 Flaming, D. "Appropriate Ethics Review Is Required." Healthc Manage Forum 30, no. 1 (Jan 2017): 46‐48. 92 Peacock, S. J. "Public Attitudes and Values in Priority Setting." Isr J Health Policy Res 4 (2015): 29. 93 Angell, B., J. Pares, and G. Mooney. "Implementing Priority Setting Frameworks: Insights from Leading Researchers." Health Policy 120, no. 12 (Dec 2016): 1389‐94.
94 Tromp, Noor, and Rob Baltussen. "Mapping of Multiple Criteria for Priority Setting of Health Interventions: An Aid for Decision Makers." BMC Health Services Research 12 (2012): 454.
95 Burns, Catherine E. "Does My Program Really Make a Difference? Program Evaluation Utilizing Aggregate Single‐Subject Data." American Journal of Evaluation 36, no. 2 (June 2015): 191‐203.
96 Williams, I. "Receptive Rationing: Reflections and Suggestions for Priority Setters in Health Care." J Health Organ Manag 29, no. 6 (2015): 701‐10.
97 Gard, Carol L., Peggy N. Flannigan, and Maureen Cluskey. "Program Evaluation: An Ongoing Systematic Process." Nursing Education Perspectives 25, no. 4 (Jul/Aug2004): 176‐9.
98 Donnelly, Catherine, Lyn Shulha, Don Klinger, and Lori Letts. "Using Program Evaluation to Support Knowledge Translation in an Interprofessional Primary Care Team: A Case Study." BMC Family Practice 17 (2016).
99 Rogowski, Wolf H., Scott D. Grosse, Jörg Schmidtke, and Georg Marckmann. "Criteria for Fairly Allocating Scarce Health‐Care Resources to Genetic Tests: Which Matter Most?" European Journal of Human Genetics : EJHG 22, no. 1 (Jan 2014): 25‐31.
100 Centers for Disease Control and Prevention. Framework for program evaluation in public health. MMWR 1999;48 (No. RR‐11) https://www.cdc.gov/eval/framework/index.htm
101 Ubel, Peter A. "Why It's Not Time for Health Care Rationing." Hastings Center Report 45, no. 2 (2018‐01‐13 2015): 15‐19.
275
Chapter 7. Conclusion
An organization’s moral agency assigns its ethical obligation to protect the human right
to health care, based in the foundations of equity, respect for human vulnerability and social
responsibility. This obligation is particularly important to reduce social inequalities within health
care, based on social determinants of health including race, ethnicity, culture, socioeconomic
status, and access to health care. Health care organizations can start to address these issues by
using cultural competency and shared decision-making, but these tools must be incorporated into
a larger framework to promote health care equity within the confines of finite resources.
A framework of resource allocation puts the patient’s goals and values first, with
recommended interventions presented in response. Resource allocation can also be used be in a
broader sense when distributing specific finite resources. Based on obligations of moral agency,
health care organizations are ethically obligated provide this framework, guiding the actions of
its agents and protecting the human rights of the patients it serves.
The human right to quality health care provides the foundation for this framework.
Human rights are based on the dignity of humans and are essential for all individuals to self-
determine. Health is essential for humans to act freely and make choices about their lives and
what is important to them. The duties to health were further defined through this dissertation as
the right to quality health care. The right to quality health care is supported by principles of
equity, respect for human vulnerability and social responsibility.
The right to health care includes the availability, accessibility, acceptability and quality
outcomes. Realizing the right to health care includes the need for health care to be available. In
addition to being available, these resources need to be accessible. All persons need have
meaningful access to health care to realize the right to health. In addition to being available and
276
accessible, these resources must also be acceptable. Acceptability means that health care must
include the services that are needed to the level of quality that is needed to promote and protect
the right to health. Further, available, accessible, acceptable quality health care must be provide
with respect to equity. This involves both horizontal and vertical equity. Horizontal equity
explains that those with equal needs should be treated equally, while vertical equity explains that
those with differing needs should be treated differently.
Health care is a human right based on respect for human vulnerability and social
responsibility in health care. The nature of human vulnerability explains that all humans are
vulnerable, which means that all humans are at risk of poor health. Special vulnerability is also
an important concept for the respect for human rights. Special vulnerability explains that some
humans are more vulnerable than others based on individual or group characteristics. Special
vulnerability can be permanent or temporary. Social responsibility also provides support for
health care as a human right. Health care is social in nature, and can be defined as a social good.
Health care organizations should provide equitable, quality health care based on their social
responsibility.
Health care quality is a function of human rights because it is needed for humans to
meaningfully exercise other rights and freedoms, and vice versa. This right to quality health care
should include care quality, patient experience, patient safety and cost concerns. These facets of
quality should be incorporated into human rights protections with the goal of reducing disparities
in health care. The human right to quality health care defines standards of care that should be
protected, which is a needed clarification to existing human rights discourse. Clarity is needed on
roles and responsibilities related to the protection and promotion of the human right to health.
The human right to health is carried out by health care organizations since it requires that
277
individuals have access to the highest quality of health care possible in the context of available
resources. The realization of this right to quality health care can be measured quality process and
outcomes, plus patient safety, patient satisfaction and costs to the health care system.
Quality health care is essential for humans to thrive and to realize other rights.
Standardization and accountability of human rights protections are needed to reduce health
disparities and protect health equity. The obligations of health care delivery organizations
include responsibilities for creating and sustaining quality health care, including measures of
outcomes, process, satisfaction or cost. Health care delivery organizations must also address
structures of inequality that influence quality and patient safety.
Social determinants of health – including race, ethnicity, culture, socioeconomic status
and barriers to access – have a serious impact on health outcomes in the United States.
Addressing these issues in the United States is especially challenging due to the multicultural
nature of the US population. Factors such as race, ethnicity and culture can have a significant
impact on health care access and outcomes. For example, Asian Americans patients can face
barriers to access based on language incongruity and discrimination.1 American Indians and
Alaskan Natives face barriers to quality health care as compared to non-Hispanic whites for
various reasons including cultural traditions, perceptions of bias, provider communication,
mistrust, beliefs and attitudes about care, cost, and continuity of care.2 Racial differences have
been demonstrated in breast cancer treatment and outcomes, where black women have
experienced worse outcomes than white women.3 In addition, geographical differences can
create significant barriers to access. Individuals who live in rural communities face significant
barriers to health care access independent of race, ethnicity and socioeconomic status.4 There are
countless examples of health disparities resulting from social determinants of health. This issue
278
will only gain importance as racial and ethnic diversity in the United States will continue to
increase over the next 50 years.5 These demographic trends will place growing pressure on
health care systems to address human rights concerns related to the policy, financing and
delivery of equitable health care. Although national policy and health care financing have a clear
role in addressing these disparities, health care delivery organizations will have a special
responsibility to promote equitable access based on their moral agencies.
The role of the health care delivery organization is based on its moral agency. The moral
agency of a health care delivery organization requires a commitment to protect the human right
to quality health care. The importance of this commitment is related to the finite nature of health
care resources and the implication for health equity. Health care delivery organizations can use
tools within an ethical framework to promote health equity and protect health and human rights –
especially the tools of shared decision-making and cultural competency.
The moral agency of health care delivery organizations requires that they protect the
human right to health. This moral agency describes how the organization enacts its goals and
values of providing safe, quality care. The mission and values of a health care organization
describe the moral identity of a health care organization. The obligations of health care
organizations include promotion of quality care and protection of patient safety in respect of the
right to quality health care. A health care’s agents carry out and embody its moral identity.
Agents enact the moral identity of the organization. Quality, patient safety, and medical error are
closely related.
Due to the nature of health care delivery, health care delivery organizations have moral
responsibilities to protect the right to quality health care. This is explained by the express moral
agency of health care delivery organizations. The moral agency of health care delivery
279
organizations is based on its ability to take collective moral action, and face collective moral
retribution based on those actions. Organizations that can face punishment-as-retribution
demonstrate rational agency since responsibility and punishment for corporate actions require the
ability to analyze corporate actions as moral. 6 Health care organizations can face collective
consequences of actions (rather than singular agents blamed for actions of the organization,) due
to the collective organization and resources behind those actions.7 The ability to assess and
penalize an organization for collective action demonstrates its independent moral agency.
Organizations have obligations to promote and protect quality health care and patient safety,
based on their role in carrying out the human right to health. The organization itself is the driver
of quality health care, based on these traits. Organizations should also monitor quality outcomes
to promote continuous quality assurance and improvement.
The health care organization should use an integrated approach to addressing issues
related to quality in health care. Health care quality encompasses the interconnected components
of the health care organization. These components cannot be separated and need to be addressed
as at the whole organization level to adequately address health care quality. This moral agency is
relevant to health care delivery organizations due to the nature of health care delivery services. A
health care delivery organization clearly fulfills duties to the interests of others through
organizational actions.8 In other words, the purpose of the health care delivery organization is to
serve the interests of others. A health care delivery organization has collective integrity since it
meets the needs of many and not just the few through its commitments, conduct, content,
context, consistency, coherence and continuity.9 A health care delivery organization is a moral
agent due to the moral obligations that result from this collective integrity.
280
Shared decision-making can provide a platform for health care delivery systems to
address the common ground between physician and patient while respecting individualized
needs. This process can be facilitated through informing and involving the patient and ensuring
that the patient has adequate decision-making influence.10 This can be difficult for organizations
to effectively facilitate. Barriers to shared decision-making can include time pressure, frequent
alternation of physicians, and poor coordination.11 Shared decision-making requires a conscious
organizational commitment and resources to ensure the support and success of this process.
Shared decision-making is also closely connected to patient-centered care. The patient, including
the patient’s unique goals and values are at the center of health care decision-making. The
respect for human vulnerability and the social responsibility of health care share a focus on
responsibilities to individual patients, as well as patient populations within health care delivery.
Patient-centered care and shared decision-making can also enhance the effectiveness and
legitimacy of the informed consent process.
In addition, organizations should cultivate cultural competency at all levels of decision-
making to facilitate shared decision-making and health equity. Cultural competency involves an
ability to interact with those who are culturally different from oneself with a consideration for
cultural beliefs, practices, communication patterns, and health-seeking behaviors.12 Cultural
competence enables culturally appropriate decision-making processes and encourages dialogue
about health behaviors and biases that may adversely affect health disparities. Cultural
competency is a tool that can be used by the organization to address ethical challenges of a
multicultural society. It can help to address the social determinants of health including race,
ethnicity, culture, socioeconomic status, and access. Social determinants of health can and should
be addressed through cultural competency programs within health care organizations. Factors
281
that affect social determinants of health such as culture, ethnicity, and race will be more
adequately addressed when an organization has an effective cultural competency program.
While shared decision-making and cultural competency can help health care delivery
organizations address the burdens of health inequity, these two tools alone will not fully protect
this right. These two tools, instead, should be integrated into a comprehensive framework in
which health care delivery organizations can protect human rights and fulfil their responsibilities
as moral agents. Presently, health care organizations lack a commonly accepted framework for
assessing benefits and prioritizing resources to protect equitable health care access. There is a
need for a framework focused on resource allocation with the intent of setting priorities within
the confines of limited health care resources. Cultural competency and shared decision-making
are important tools to promote health equity and human rights but, especially within the context
of finite healthcare resources, health care organizations need additional and even more robust
guidelines for addressing inequalities.
Health care delivery organizations have an obligation to protect the human right to health
based on their moral agency. This includes an obligation to protect the nature of human
vulnerability and honor their social responsibility. More specifically, health care organizations
must promote equitable quality health care, but this creates major challenges for health care
organizations when resources are scarce or limited, as they are in the United States.
Since health care resources are finite but demand is virtually unlimited, some people may
not be afforded the resources they need for health care. There has been much debate on this issue
in terms of health care rationing. The definition and arguments for rationing have thus far been
inadequate responses to the problem of limited resources in health care. Health care rationing has
also caused conflict and barriers to meaningful national policy discussion about the limitations of
282
health care resources. Because of this, no comprehensive healthcare resource allocation exists at
the national level. This creates challenges to health care delivery organizations who are left with
little guidance on how to allocate resources.
Even if there was national policy guidance for the allocation of resources, health care
delivery organizations would still face significant challenges to implementation based on the
variation of patient needs and payer mix that are unique to each delivery organization. Health
care delivery organizations have an obligation to engage in ethically sound approaches to
distribution of their limited resources. The process for these decisions should be founded in
justice with a consideration for value. The process should be equitable for all patients, regardless
of medically irrelevant characteristics such as race, ethnicity, culture, socioeconomic status and
geographical proximity to health care providers.
The debate on medical futility highlights the need for a health care delivery resource
allocation framework. When medical non-beneficial care is provided, resources are wasted and
patients suffer. The major purpose of medical futility assessment is to determine whether an
intervention should be limited or eliminated based on its lack of efficacy. This could be a helpful
approach to evaluating and identifying waste within the health care system but it meets ethical
challenge because it lacks normative criteria for assessment.
Shared decision-making and patient-centered care facilitated by health care delivery
organizations can help to address issues related to non-beneficial care. When systematically
supported and guided by organizational policy, shared decision-making and patient-centered care
can be used to identify patient values and goals, and then make recommendations that are aligned
with benefit to those values and goals. Through shared decision-making, nonbeneficial medical
283
care should be eliminated, since the patient and provider will decide on a treatment that is
aligned with the patient’s goals and values.
The role of the health care delivery organization is to facilitate policy and practical
decision-making to protect the human right to health care through equitable allocation of
available health care resources. This is accomplished by instituting a framework that
incorporates a resource policy committee, stakeholder commentary on developed policy, bedside
decision-making and an option for the community that the delivery organization serves to
provide input on future policy development. The resource policy committee should fulfil three
major roles of analysis, policy development and education. Analysis should incorporate justice,
respect for human vulnerability, and the social responsibility of the delivery organization. Policy
development should utilize the accountability for reasonableness framework. Education should
support cultural competency, shared decision-making and multi-disciplinary collaboration.
Through this framework, ethical resource allocation will be supported within health care delivery
organizations.
1 Weng, Suzie S. PhD M. S. W., and Warren T. I. I. I. M. S. W. Wolfe. "Asian American Health Inequities: An Exploration of Cultural and Language Incongruity and Discrimination in Accessing and Utilizing the Healthcare System." International Public Health Journal 8, no. 2 (2016): 155‐67.
2 Rutman, Shira M. P. H., Leslie PhD Phillips, and Aren M. U. P. Sparck. "Health Care Access and Use by Urban American Indians and Alaska Natives: Findings from the National Health Interview Survey (2006‐09)." Journal of Health Care for the Poor and Underserved 27, no. 3 (Aug 2016): 1521‐36.
3 Akinyemiju, Tomi F., Neomi Vin‐Raviv, Daniel Chavez‐Yenter, Xueyan Zhao, and Henna Budhwani. "Race/Ethnicity and Socio‐Economic Differences in Breast Cancer Surgery Outcomes." Cancer Epidemiology 39, no. 5 (2015): 745‐51.
4 Caldwell, Julia T., Chandra L. Ford, Steven P. Wallace, May C. Wang, and Lois M. Takahashi. "Intersection of Living in a Rural Versus Urban Area and Race/Ethnicity in Explaining Access to Health Care in the United States." American Journal of Public Health 106, no. 8 (Aug 2016): 1463‐69.
5 U.S. Census Bureau. “U.S. Census Bureau Projections Show a Slower Growing, Older, More Diverse Nation a Half Century from Now.” (2012.) www.census.gov/newsroom/releases/archives/population/cb12‐243.html.
6 Wilmot, Stephen. "Corporate Moral Responsibility: What Can We Infer from Our Understanding of Organizations?" Journal of Business Ethics 30, no. 2 (Mar 2001): 161‐69.
7 Soares, C. "Corporate Versus Individual Moral Responsibility." Journal of Business Ethics 46, no. 2 (Aug 2003): 43‐50.
8 Gowri, Aditi. "On Corporate Virtue." Journal of Business Ethics 70, no. 4 (Feb 2007): 391‐400.
284
9 Maak, Thomas. "Undivided Corporate Responsibility: Towards a Theory of Corporate Integrity." Journal of Business Ethics 82, no. 2 (Oct 2008): 353‐68.
10 Stacey, Gemma, Anne Felton, Ada Hui, Theo Stickley, Philip Houghton, Bob Diamond, Alastair Morgan, James Shutt, and Martin Willis. "Informed, Involved and Influential: Three Is of Shared Decision Making." Mental Health Practice (2014+) 19, no. 4 (Dec 2015): 31.
11 Hahlweg, Pola, Martin Härter, Yvonne Nestoriuc, and Isabelle Scholl. "How Are Decisions Made in Cancer Care? A Qualitative Study Using Participant Observation of Current Practice." BMJ Open 7, no. 9 (2017).
12 Kelley, Michele A. "Cultural Competency." In Encyclopedia of Health Services Research, edited by Ross M. Mullner, 270‐274. Thousand Oaks, CA: SAGE Publications, Inc., 2009. doi: 10.4135/9781412971942.n98.
285
Appendix A
286
Appendix B
287
Bibliography
18th World Medical Association General Assembly. Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. Helinski, Finland: World Medical Association, June 1964.
64th World Medical Association General Assembly. Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. Fortaleza, Brazil: World Medical Association, Oct 2013.
Abraham, Jean PhD, Brian M. D. Sick, Joseph M. H. A. Anderson, Andrea M. H. A. Berg, Chad M. H. A. Dehmer, Amanda M. H. A. Tufano, and Kevin T. Fache Marx. "Selecting a Provider: What Factors Influence Patients' Decision Making?" Journal of Healthcare Management 56, no. 2 (Mar/Apr 2011): 99-114; discussion 14-5.
Acharya, Lalatendu. Encyclopedia of Human Services and Diversity. Thousand Oaks, California: SAGE Publications, Inc., 2014.
Addario, Bonnie J., Ana Fadich, Jesme Fox, Linda Krebs, Deborah Maskens, Kathy Oliver, Erin Schwartz, Gilliosa Spurrier-Bernard, and Timothy Turnham. "Patient Value: Perspectives from the Advocacy Community." Expectations 21, no. 1 (Feb 2018): 57-63.
Adolphs, Ralph. "Cognitive Neuroscience of Human Social Behaviour." Nature Reviews. Neuroscience 4, no. 3 (Mar 2003): 165-78.
Agency for Healthcare Research and Quality. “The CAHPS Program.” CAHPS Home. Accessed May 19, 2015. https://www.cahps.ahrq.gov/about-cahps/cahps-program/index.html
Agency for Healthcare Research and Quality. “Tools and Resources.” Accessed January 13, 018. https://www.ahrq.gov/professionals/quality-patient-safety/patient-safety-resources/index.html
Agency for Healthcare Research and Quality. Improving Healthcare Quality. September 2002. http://archive.ahrq.gov/research/findings/factsheets/errors-safety/improving-quality/improving-health-care-quality.pdf
Ahlstrom-Vij, Kristoffer. "Procedural Justice and the Problem of Intellectual Deference." Episteme 11, no. 4 (Dec 2014): 423-42.
Ahola-Launonen, Johanna. "The Evolving Idea of Social Responsibility in Bioethics." Cambridge Quarterly of Healthcare Ethics 24, no. 2 (Apr 2015): 204-13.
Akinyemiju, Tomi F., Neomi Vin-Raviv, Daniel Chavez-Yenter, Xueyan Zhao, and Henna Budhwani. "Race/Ethnicity and Socio-Economic Differences in Breast Cancer Surgery Outcomes." Cancer Epidemiology 39, no. 5 (2015): 745-51.
288
Alam, Rahul, Sudeh Cheraghi-Sohi, Maria Panagioti, Aneez Esmail, Stephen Campbell, and Efharis Panagopoulou. "Managing Diagnostic Uncertainty in Primary Care: A Systematic Critical Review." BMC Family Practice 18 (2017).
Altisent, Rogelio, Nieves Martín-Espildora, and Maria Teresa Delgado-Marroquín. "Health Care Ethics Consultation: Individual Consultant or Committee Model? Pros and Cons." American Journal of Bioethics 13, no. 2 (2018-01-13 2013): 25-27.
American College of Healthcare Executives. ACHE Code of Ethics. November 14, 2011. https://www.ache.org/abt_ache/code.cfm#organization
American College of Physicians. "Racial and Ethnic Disparities in Health Care, Updated 2010." Philadelphia, 2010.
American Medical Association. "Principles of Medical Ethics." AMA Code of Medical Ethics. June 1, 2001. Accessed May 19, 2015. http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/principles-medica
Amirsadri, Alireza, Jaclynne Burns, Albert Pizzuti, and Cynthia L. Arfken. "Home-Based Telepsychiatry in Us Urban Area." Case Reports in Psychiatry (2017).
Anderson, L. M., S. C. Scrimshaw, M. T. Fullilove, J. E. Fielding, and J. Normand. "Culturally Competent Healthcare Systems. A Systematic Review." Am J Prev Med 24, no. 3 Suppl (2003): 68-79.
Angell, B., J. Pares, and G. Mooney. "Implementing Priority Setting Frameworks: Insights from Leading Researchers." Health Policy 120, no. 12 (Dec 2016): 1389-94.
Anhang Price, Rebecca, Marc N. Elliott, Paul D. Cleary, Alan M. Zaslavsky, and Ron D. Hays. "Should Health Care Providers Be Accountable for Patients' Care Experiences?" Journal of General Internal Medicine 30, no. 2 (Feb 2015): 253-56.
Annas, George J. "Human Rights." In Bioethics, edited by Bruce Jennings, 1612-18. Farmington Hills, MI: Macmillan Reference USA, 2014.
Ansell, Dominique, James A. G. Crispo, Benjamin Simard, and Lise M. Bjerre. "Interventions to Reduce Wait Times for Primary Care Appointments: A Systematic Review." BMC Health Services Research 17 (2017).
Antiel, Ryan M., Farr A. Curlin, Katherine M. James, and Jon C. Tilburt. "The Moral Psychology of Rationing among Physicians: The Role of Harm and Fairness Intuitions in Physician Objections to Cost-Effectiveness and Cost-Containment." Philosophy, Ethics and Humanities in Medicine 8, no. 1 (2013): 8-13.
Appelbaum, Paul S., Jessica W. Berg, and Charles W. Lidz. 2001. Informed Consent: Legal Theory and Clinical Practice (2nd Edition). Cary, NC, USA: Oxford University Press, USA. Ebook available through Gumberg Library.
289
Armstrong, Matthew H. M. D. M. A., Joseph K. M. D. J. D. Poku, and Christopher M. M. D. J. D. Burkle. "Medical Futility and Nonbeneficial Interventions: An Algorithm to Aid Clinicians." Mayo Clinic Proceedings 89, no. 12 (Dec 2014): 1599-607.
Arnason, Gardar. "The Role and Obligations of Ethicists as Members of Ethics Committees in Professional Organizations." AJOB Neuroscience 8, no. 1 (Jan-Mar 2017): 18-20.
Arnold, Denis G. "Corporate Moral Agency." Midwest Studies In Philosophy 30, no. 1 (2006): 279-91.
Arras, John D., and Elizabeth M. Fenton. "Bioethics & Human Rights: Access to Health-Related Goods." The Hastings Center Report 39, no. 5 (Sep/Oct 2009): 27-38.
Ashman, I, and Diana W. "For or against Corporate Identity? Personification and the Problem of Moral Agency." Journal of Business Ethics 76, no. 1 (Nov 2007): 83-95.
Austin, Wendy. "Moral Distress and the Contemporary Plight of Health Professionals." HEC Forum 24, no. 1 (Mar 2012): 27-38.
Bach, P. B., L. D. Cramer, J. L. Warren, and C. B. Begg. "Racial Differences in the Treatment of Early-Stage Lung Cancer." N Engl J Med 341, no. 16 (1999): 1198-205.
Badano, G. "If You're a Rawlsian, How Come You're So Close to Utilitarianism and Intuitionism? A Critique of Daniels's Accountability for Reasonableness." Health Care Anal (Mar 22 2017).
Bader, Michael D. M., Marnie Purciel, Paulette Yousefzadeh, and Kathryn M. Neckerman. "Disparities in Neighborhood Food Environments: Implications of Measurement Strategies." Economic Geography 86, no. 4 (2010): 409-30
Baghbanian, Abdolvahab BSc MSc PhD, and Ghazal B. S. M. P. H. Torkfar. "Economics and Resourcing of Complex Healthcare Systems." Australian Health Review 36, no. 4 (2012): 394-400.
Bail, K., and L. Grealish. "'Failure to Maintain': A Theoretical Proposition for a New Quality Indicator of Nurse Care Rationing for Complex Older People in Hospital." Int J Nurs Stud 63 (Nov 2016): 146-61.
Bailey, Zinzi D., Nancy Krieger, Madina Agénor, Jasmine Graves, Natalia Linos, and Mary T. Bassett. "Structural Racism and Health Inequities in the USA: Evidence and Interventions." The Lancet 389, no. 10077 (2017): 1453-63.
Baily, Mary Ann, Melissa Bottrell, Joannne Lynn, and Bruce Jennings. "A Hastings Center Special Report: The Ethics of Using Qi Methods to Improve Health Care Quality and Safety." The Hastings Center Report 36, no. 4 (2006): s1-s40.
290
Bal, Gaëlle, Elodie Sellier, Sandra D. Tchouda, and Patrice Francois. "Improving Quality of Care and Patient Safety through Morbidity and Mortality Conferences." Journal for Healthcare Quality 36, no. 1 (Jan/Feb 2014): 29-36.
Bambas, Lexi. "Integrating Equity into Health Information Systems: A Human Rights Approach to Health and Information." PLoS Medicine 2, no. 4 (Apr 2005): e102.
Bandini, Julia I., Andrew Courtwright, Angelika A. Zollfrank, Ellen M. Robinson, and Wendy Cadge. "The Role of Religious Beliefs in Ethics Committee Consultations for Conflict over Life-Sustaining Treatment." Journal of Medical Ethics 43, no. 6 (Jun 2017): 353.
Barina, Rachelle. "Ethics Outside of Inpatient Care: The Need for Alliances between Clinical and Organizational Ethics." HEC Forum 26, no. 4 (Dec 2014): 309-23.
Barnard, David. "Vulnerability and Trustworthiness: Polestars of Professionalism in Healthcare." Cambridge Quarterly of Healthcare Ethics 25, no. 2 (2017-03-21 2016): 288-300.
Barr, D. A., and S. F. Wanat. "Listening to Patients: Cultural and Linguistic Barriers to Health Care Access." Fam Med 37, no. 3 (Mar 2005): 199-204.
Barton, Amy J. PhD R. N. Faan, and Mary Beth Flynn PhD R. N. C. N. S. Ccns Faan Makic. "Technology and Patient Safety." Clinical Nurse Specialist 29, no. 3 (May/Jun 2015): 129.
Bayoumi, Ahmed M. "Equity and Health Services." Journal of Public Health Policy 30, no. 2 (2009): 176-82.
Beachamp, L and Childress JF. Principles of Biomedical Ethics, 7th Edition. Oxford University Press, 2013.
Beal, Anne C. "High-Quality Health Care: The Essential Route to Eliminating Disparities and Achieving Health Equity." Health Affairs 30, no. 10 (2011): 1868-71.
Beard, J. R., N. Tomaska, A. Earnest, R. Summerhayes, and G. Morgan. "Influence of Socioeconomic and Cultural Factors on Rural Health." Australian Journal of Rural Health 17, no. 1 (2009): 10-15 6p.
Bennett, Belinda. "Introduction: Health and Human Rights." International Journal of Law in Context 7, no. 3 (Sep 2011): 271-72.
Berlin, Elois Ann, and William C. Fowkes. "A Teaching Framework for Cross-Cultural Health Care—Application in Family Practice." Western Journal of Medicine 139, no. 6 (1983): 934-38.
Betancourt, J. R., J. Corbett, and M. R. Bondaryk. "Addressing Disparities and Achieving Equity: Cultural Competence, Ethics, and Health-Care Transformation." Chest 145, no. 1 (Jan 2014): 143-48.
291
Betancourt, Joseph R. "Improving Quality and Achieving Equity: The Role of Cultural Competence in Reducing Racial and Ethnic Disparities in Health Care." 2006.
Betancourt, Joseph R., Alexander R. Green, and J. Emilio Carrillo. "Cultural Competence in Health Care: Emerging Frameworks and Practical Approaches." The Commonwealth Fund, 2002.
Betancourt, Joseph R., Alexander R. Green, and J. Emilio Carrillo. "Cultural Competence in Health Care: Emerging Frameworks and Practical Approaches." The Commonwealth Fund, 2002.
Betancourt, Joseph R., Sarah Beiter, and Alden Landry. "Improving Quality, Achieving Equity, and Increasing Diversity in Healthcare: The Future Is Now." Journal of Best Practices in Health Professions Diversity: Education, Research & Policy 6, no. 1 (Spring 2013): 903-17.
Bierhoff, H.W., R.L. Cohen, and J. Greenberg. Justice in Social Relations. Springer US, 2013. 211-219
Birmingham, Patricia, Martha D. Buffum, Mary A. Blegen, and Audrey Lyndon. "Handoffs and Patient Safety: Grasping the Story and Painting a Full Picture." Western Journal of Nursing Research 37, no. 11 (Nov 2015): 1458.
Blackhall, L. J., G. Frank, S. T. Murphy, V. Michel, J. M. Palmer, and S. P. Azen. "Ethnicity and Attitudes Towards Life Sustaining Technology." Soc Sci Med 48, no. 12 (1999): 1779-89.
Blacksher, Erika, and John R. Stone. "Introduction to Vulnerability Issues of Theoretical Medicine and Bioethics." Theoretical Medicine and Bioethics: Philosophy of Medical Research and Practice 23, no. 6 (2017-03-21 2002): 421-24.
Blanchard, Jeremy "Applying the Risk Discernment Process." Physician Leadership Journal 2, no. 1 (Jan/Feb 2015): 36-39.
Block, Dale "Revisiting the Triple Aim-Are We Any Closer to Integrated Health Care?" Physician Executive 40, no. 1 (Jan/Feb 2014): 40-3.
Boardman, Anne, Joanne Wilkinson, and Ruth Board. "Patient Satisfaction with Telephone Follow up after Treatment." Cancer Nursing Practice (2014+) 14, no. 9 (Nov 2015): 27.
Bonevski, Billie, Madeleine Randell, Chris Paul, Kathy Chapman, Laura Twyman, Jamie Bryant, Irena Brozek, and Clare Hughes. "Reaching the Hard-to-Reach: A Systematic Review of Strategies for Improving Health and Medical Research with Socially Disadvantaged Groups." BMC Medical Research Methodology 14 (20144): 42.
Bosch-Capblanch, Xavier, Zuske Meike-Kathrin, and Christian Auer. "Research on Subgroups Is Not Research on Equity Attributes: Evidence from an Overview of Systematic Reviews on Vaccination." International Journal for Equity in Health 16 (2017).
292
Bowers, John. "Balancing Operating Theatre and Bed Capacity in a Cardiothoracic Centre." Health Care Management Science 16, no. 3 (Sep 2013): 236-44.
Brach, C., and I. Fraser. "Can Cultural Competency Reduce Racial and Ethnic Health Disparities? A Review and Conceptual Model." Med Care Res Rev 57 Suppl 1 (2000): 181-184.
Brach, C., and I. Fraser. "Reducing Disparities through Culturally Competent Health Care: An Analysis of the Business Case." Qual Manag Health Care 10, no. 4 (2002): 15-28.
Brandão, Cristina, Guilhermina Rego, Ivone Duarte, and Rui Nunes. "Social Responsibility: A New Paradigm of Hospital Governance? Health Care Analysis 21, no. 4 (2013): 390-402.
Brandis, Susan, Stephanie Schleimer, and John Rice. "Bricks-and-Mortar and Patient Safety Culture." Journal of Health Organization and Management 31, no. 4 (2017): 459-70.
Brännmark, Johan. "Respect for Persons in Bioethics: Towards a Human Rights-Based Account." Human Rights Review 18, no. 2 (Jun 2017): 171-87.
Braveman, P. "What Are Health Disparities and Health Equity? We Need to Be Clear." Public Health Rep 129 Suppl 2 (Jan-Feb 2014): 5-8.
Braveman, P. "What Is Health Equity: And How Does a Life-Course Approach Take Us Further toward It?" Matern Child Health J 18, no. 2 (Feb 2014): 366-72.
Braveman, P., and S. Gruskin. "Poverty, Equity, Human Rights and Health." Bull World Health Organ 81, no. 7 (2003): 539-45.
Braveman, PA. et al. "Health Disparities and Health Equity: The Issue Is Justice." American Journal of Public Health 101, no. S1 (2011): S149-55.
Braveman, Paula. "What Is Health Equity: And How Does a Life-Course Approach Take Us Further toward It?" Maternal and Child Health Journal 18, no. 2 (Feb 2014): 366-72.
Brennan, Niamh M., and Maureen A. Flynn. "Differentiating Clinical Governance, Clinical Management and Clinical Practice." Clinical Governance 18, no. 2 (2013): 114-31.
Brett, Allan S, and Laurence B. McCullough. "Addressing Requests by Patients for Nonbeneficial Interventions." JAMA 307, no. 2 (2012 Jan 11): 149-50.
Brock, D. W. "Ethical and Value Issues in Insurance Coverage for Cancer Treatment." Oncologist 15 Suppl 1 (2010): 36-42.
Brody, Howard "From an Ethics of Rationing to an Ethics of Waste Avoidance." The New England Journal of Medicine 366, no. 21 May 2012): 1949-51.
Brudney, D. "Is Health Care a Human Right?" Theor Med Bioeth 37, no. 4 (Aug 2016): 249-57.
293
Buchholz, RA, and Rosenthal, SB. "Integrating Ethics All the Way Through: The Issue of Moral Agency Reconsidered." Journal of Business Ethics 66, no. 2/3 (2006): 233-39.
Bunn, Frances, Claire Goodman, Jill Manthorpe, Marie-Anne Durand, Isabel Hodkinson, Greta Rait, Paul Millac, et al. "Supporting Shared Decision-Making for Older People with Multiple Health and Social Care Needs: A Protocol for a Realist Synthesis to Inform Integrated Care Models." BMJ Open 7, no. 2 (2017).
Burgess, Diana Jill, Megan Crowley-Matoka, Sean Phelan, John F. Dovidio, Robert Kerns, Craig Roth, Somnath Saha, and Michelle van Ryn. "Patient Race and Physicians' Decisions to Prescribe Opioids for Chronic Low Back Pain." Social Science & Medicine 67, no. 11 (2008): 1852-60.
Burke, Nancy J., Tessa M. Napoles, Priscilla J. Banks, Fern S. Orenstein, Judith A. Luce, and Galen Joseph. "Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients." PLoS One 11, no. 12 (Dec 2016).
Burnham, J. M., F. Meta, V. Lizzio, E. C. Makhni, and K. J. Bozic. "Technology Assessment and Cost-Effectiveness in Orthopedics: How to Measure Outcomes and Deliver Value in a Constantly Changing Healthcare Environment." Curr Rev Musculoskelet Med 10, no. 2 (Jun 2017): 233-39.
Burns, Catherine E. "Does My Program Really Make a Difference? Program Evaluation Utilizing Aggregate Single-Subject Data." American Journal of Evaluation 36, no. 2 (June 2015): 191-203.
Businelle, Mills, K. G. Chartier, D. E. Kendzor, J. M. Reingle, and K. Shuval. "Do Stressful Events Account for the Link between Socioeconomic Status and Mental Health?" J Public Health (Oxf) 36, no. 2 (Jun 2014): 205-12.
Bustreo, Flavia, and Paul Hunt. "The Right to Health Is Coming of Age: Evidence of Impact and the Importance of Leadership." Journal of Public Health Policy 34, no. 4 (Nov 2013): 574-9.
Byskov, J., B. Marchal, S. Maluka, J. M. Zulu, S. A. Bukachi, A. K. Hurtig, A. Blystad, et al. "The Accountability for Reasonableness Approach to Guide Priority Setting in Health Systems within Limited Resources--Findings from Action Research at District Level in Kenya, Tanzania, and Zambia." Health Res Policy Syst 12 (Aug 20 2014): 49.
Byskov, Jens, Bruno Marchal, Stephen Maluka, Joseph M. Zulu, Salome A. Bukachi, Anna-Karin Hurtig, Astrid Blystad, et al. "The Accountability for Reasonableness Approach to Guide Resource allocation in Health Systems within Limited Resources - Findings from Action Research at District Level in Kenya, Tanzania, and Zambia." Research Policy and Systems 12 (2014): 49.
Cady, Steven H., Jane V. Wheeler, Jeff DeWolf, and Michelle Brodke. "Mission, Vision, and Values: What Do They Say?" Organization Development Journal 29, no. 1 (Spring 2011): 63-78.
294
Caldwell, Julia T., Chandra L. Ford, Steven P. Wallace, May C. Wang, and Lois M. Takahashi. "Intersection of Living in a Rural Versus Urban Area and Race/Ethnicity in Explaining Access to Health Care in the United States." American Journal of Public Health 106, no. 8 (Aug 2016): 1463-69.
Callahan, Daniel. "Rationing: Theory, Politics, and Passions." The Hastings Center Report 41, no. 2 (Mar/Apr 2011): 23-7.
Calloway, S. J. "The Effect of Culture on Beliefs Related to Autonomy and Informed Consent." Journal of Cultural Diversity 16, no. 2 (Summer 2009): 68-70 3p.
Carrillo, J. E., A. R. Green, and J. R. Betancourt. "Cross-Cultural Primary Care: A Patient-Based Approach." Ann Intern Med 130, no. 10 (1999): 829-34.
Carrillo, J. Emilio, Victor Carrillo, Hector R. B. A. Perez, Debbie M. Salas-Lopez, Ana Natale-Pereira, and Alex Byron. "Defining and Targeting Health Care Access Barriers." Journal of Health Care for the Poor and Underserved 22, no. 2 (May 2011): 562-75.
Cassie Cunningham, Goedken, Jane Moeckli, Peter M. Cram, and Reisinger Heather Schacht. "Introduction of Tele-Icu in Rural Hospitals: Changing Organisational Culture to Harness Benefits." Intensive & Critical Care Nursing 40 (2017): 51-56.
Castlen, J. P., D. J. Cote, W. A. Moojen, P. A. Robe, N. Balak, J. Brennum, M. Ammirati, T. Mathiesen, and M. L. D. Broekman. "The Changing Health Care Landscape and Implications of Organizational Ethics on Modern Medical Practice." World Neurosurg 102 (Jun 2017): 420-24.
Cauley, C. E., S. D. Block, L. A. Koritsanszky, J. D. Gass, J. L. Frydman, S. M. Nurudeen, R. E. Bernacki, and Z. Cooper. "Surgeons' Perspectives on Avoiding Nonbeneficial Treatments in Seriously Ill Older Patients with Surgical Emergencies: A Qualitative Study." J Palliat Med 19, no. 5 (May 2016): 529-37.
Centers for Disease Control and Prevention. Framework for program evaluation in public health. MMWR 1999;48 (No. RR-11) https://www.cdc.gov/eval/framework/index.htm
Centers for Medicare and Medicaid Services. “Outcomes.” Accessed January 13, 2018. https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/HospitalQualityInits/OutcomeMeasures.html
Chapman, Audrey R., and Benjamin Carbonetti. "Human Rights Protections for Vulnerable and Disadvantaged Groups: The Contributions of the Un Committee on Economic, Social and Cultural Rights." Human Rights Quarterly 33, no. 3 (Aug 2011): 682-732,922-23.
Charlesworth, M. "Don't Blame the 'Bio'--Blame the 'Ethics': Varieties of (Bio)Ethics and the Challenge of Pluralism." J Bioeth Inq 2, no. 1 (2005): 10-7.Chassin, Mark, Jerod M. Loeb, Stephen P. Schmaltz, and Robert M. Wachter. "Accountability Measures -- Using Measurement to Promote Quality Improvement." The New England Journal of Medicine 363, no. 7 (2010): 683-8.
295
Chatfield, J. Seth, Clinton O. Longenecker, Laurence S. Fink, and Jeffrey PGold. "Ten Ceo Imperatives for Healthcare Transformation: Lessons from Top-Performing Academic Medical Centers." Journal of Healthcare Management 62, no. 6 (Nov/Dec 2017): 371-83.
Chen, Jie, Daniel C. Mullins, Priscilla Novak, and Stephen B. Thomas. "Personalized Strategies to Activate and Empower Patients in Health Care and Reduce Health Disparities." Health Education & Behavior 43, no. 1 (February 2016): 25-34.
Cheshire, William P. J. R. M. D. "Telemedicine and the Ethics of Medical Care at a Distance." Ethics & Medicine 33, no. 2 (Summer 2017): 71-75,67.
Chin, J. L. "Culturally Competent Health Care." Public Health Reports 115, no. 1 (2000): 25-33.
Christiansen, Isaac. "Commodification of Healthcare and Its Consequences." World Review of Political Economy 8, no. 1 (Spring 2017): 82-103.
Citrin, Levi J. D., and Richard M. D. Blath. "Critical Management Tools for Getting Costs under Control." Physician Executive 39, no. 6 (Nov/Dec 2013): 28-31.
Clough, Juliana, Sunmin ScD Lee, and David H. Chae. "Barriers to Health Care among Asian Immigrants in the United States: A Traditional Review." Journal of Health Care for the Poor and Underserved 24, no. 1 (Feb 2013): 384-403.
Cohen, Alan B. "The Debate over Health Care Rationing: Déjà Vu All over Again?" Inquiry - Excellus Health Plan 49, no. 2 (Summer 2012): 90-100.
Collie, Therese, Bradley Graham, and Beverley A. Sparks. "Fair Process Revisited: Differential Effects of Interactional and Procedural Justice in the Presence of Social Comparison Information." Journal of Experimental Social Psychology 38, no. 6 (Nov 2002): 545-55.
Collins, Karen Scott, Dora L. Hughes, Michelle M. Doty, Brett L. Ives, Jennifer N. Edwards, and K. Tenney. "Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans. Findings from the Commonwealth Fund 2001 Health Care Quality Survey." 2002.
Committee on Quality Health Care in America, Institute of Medicine. Crossing The Quality Chasm : a New Health System for the 21st Century. Washington, D.C. :National Academy Press (2001): 5-6
Committee on Quality of Health Care in America, Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, CD: National Academy Press, 2001. http://www.nap.edu/html/quality_chasm/report
Committee on Quality of Health Care in America, Institute of Medicine. To err is human: building a safer health system. Washington, D.C.: National Academy Press. (2000): 26.
Constitution of the World Health Organization . Geneva: World Health Organization; 1948.
296
Cooper, A. Joglekar, J. Gibson, A. H. Swota, and D. K. Martin. "Communication of Bed Allocation Decisions in a Critical Care Unit and Accountability for Reasonableness." BMC Health Serv Res 5 (Oct 31 2005): 67.
Cooper, L. A., T. S. Purnell, C. A. Ibe, J. P. Halbert, L. R. Bone, K. A. Carson, D. Hickman, et al. "Reaching for Health Equity and Social Justice in Baltimore: The Evolution of an Academic-Community Partnership and Conceptual Framework to Address Hypertension Disparities." Ethn Dis 26, no. 3 (Jul 21 2016): 369-78.
Cooper, Z., A. Courtwright, A. Karlage, A. Gawande, and S. Block. "Pitfalls in Communication That Lead to Nonbeneficial Emergency Surgery in Elderly Patients with Serious Illness: Description of the Problem and Elements of a Solution." Ann Surg 260, no. 6 (Dec 2014): 949-57.
Cosgrove, Delos M., Michael Fisher, Patricia Gabow, Gary Gottlieb, George C. Halvorson, Brent C. James, Gary S. Kaplan, et al. "Ten Strategies to Lower Costs, Improve Quality, and Engage Patients: The View from Leading Health System Ceos." Health Affairs 32, no. 2 (Feb 2013): 321-7.
Costa-Font, J., J. R. Forns, and A. Sato. "Participatory Health System Priority Setting: Evidence from a Budget Experiment." Soc Sci Med 146 (Dec 2015): 182-90.
Council for International Organizations of Medical Sciences (CIOMS) & World Health Organization (WHO) “International Ethical Guidelines for Biomedical Research Involving Human Subjects.” Geneva: 2002.
Council for International Organizations of Medical Sciences. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva: 2002.
Courtwright, Andrew. "Who Is "Too Sick to Benefit" The Hastings Center Report 42, no. 4 (Jul/Aug 2012): 41-7.
Cromwell, I., S. J. Peacock, and C. Mitton. "'Real-World' Health Care Priority Setting Using Explicit Decision Criteria: A Systematic Review of the Literature." BMC Health Serv Res 15 (Apr 17 2015): 164.
Cummings, A., S. Lund, N. Campling, C. R. May, A. Richardson, and M. Myall. "Implementing Communication and Decision-Making Interventions Directed at Goals of Care: A Theory-Led Scoping Review." BMJ Open 7, no. 10 (Oct 6 2017): e017056.
Cundiff, Jenny M., Timothy W. Smith, Carolynne E. Baron, and Bert N. Uchino. "Hierarchy and Health: Physiological Effects of Interpersonal Experiences Associated with Socioeconomic Position." Health Psychology 35, no. 4 (2016): 356-65 11p.
Curtis, Andrew J., and Wei-An Andy Lee. "Spatial Patterns of Diabetes Related Health Problems for Vulnerable Populations in Los Angeles." International Journal of Health Geographics 9 (2010): 43.
297
Curtis, J. R., R. A. Engelberg, and J. M. Teno. "Understanding Variability of End-of-Life Care in the Icu for the Elderly." Intensive Care Med 43, no. 1 (Jan 2017): 94-96.
Daly, Bobby, and Elizabeth A. Mort. "A Decade after to Err Is Human: What Should Health Care Leaders Be Doing?" Physician Executive 40, no. 3 (2014): 50-2, 54.
Daniels, N. "Accountability for Reasonableness." Bmj 321, no. 7272 (Nov 25 2000): 1300-1.
Daniels, N. "Decisions About Access to Health Care and Accountability for Reasonableness." J Urban Health 76, no. 2 (Jun 1999): 176-91.
Daniels, Norman, “Justice, Health and Health Care,” in Medicine and Social Justice: Essays on the Distribution of Health Care, edited by Rhodes, Rosamond et. al. Oxford: Oxford University Press, 2012: 17-20.
Davies, Ben. "Fair Innings and Time-Relative Claims." Bioethics 30, no. 6 (2018-01-13 2016): 462-68.
Davila, Fidel. "The Infinite Costs of Futile Care-the Ultimate Physician Executive Challenge." Physician Executive 32, no. 1 (Jan/Feb 2006): 60-3.
Davis, Michael. Professional Codes. The Sage Handbook of Health Care Ethics: Core and Emerging Issues. Sage Publications Ltd. London: SAGE Publications Ltd., 2011. http://dx.doi.org/10.4135/9781446200971.
Day, Lisa. "Distributive Justice and Personal Responsibility for Choices About Health." American Journal of Critical Care 15, no. 1 (Jan 2006): 96-8.
de Felice, Damiano. "Business and Human Rights Indicators to Measure the Corporate Responsibility to Respect: Challenges and Opportunities." Human Rights Quarterly 37, no. 2 (May 2015 2015): 511-555.
de Groot, F., S. Capri, J. C. Castanier, D. Cunningham, B. Flamion, M. Flume, H. Herholz, et al. "Ethical Hurdles in the Prioritization of Oncology Care." Appl Health Econ Health Policy 15, no. 2 (Apr 2017): 119-26.
Decety, J., and J. M. Cowell. "Empathy, Justice, and Moral Behavior." AJOB Neurosci 6, no. 3 (2015): 3-14.
"Declaration of Professional Responsibility Medicine's Social Contract with Humanity." In Encyclopedia of Bioethics, edited by Stephen G. Post, 2692. New York: Macmillan Reference USA, 2004.
Dekker, Sidney. Just Culture: Balancing Safety and Accountability. Burlington, VT: Ashgate Publishing Company, (2014.)1-10.
298
DeMartino, E. S., S. E. Wordingham, J. M. Stulak, B. A. Boilson, K. R. Fuechtmann, N. Singh, D. P. Sulmasy, O. E. Pajaro, and P. S. Mueller. "Ethical Analysis of Withdrawing Total Artificial Heart Support." Mayo Clin Proc 92, no. 5 (May 2017): 719-25.
Desmidt, S et al. "Looking for the Value of Mission Statements: A Meta-Analysis of 20 Years of Research." Management Decision 49, no. 3 (2011): 468-83.
Dessart, Francis. "Freedom and the Fundamental Right of the Human Being." International Journal of Communication Research 4, no. 3 (Jul-Sep 2014): 289-95.
Dharssi, Safiyya, Durhane Wong-Rieger, Matthew Harold, and Sharon Terry. "Review of 11 National Policies for Rare Diseases in the Context of Key Patient Needs." Orphanet Journal of Rare Diseases 12 (2017).
Dilworth-Anderson, Peggye, Geraldine Pierre, and Tandrea S. Hilliard. "Social Justice, Health Disparities, and Culture in the Care of the Elderly." Journal of Law, Medicine & Ethics 40, no. 1 (Spring2012): 26-32.
Dinda, Soumyananda. "Inclusive Growth through Creation of Human and Social Capital." International Journal of Social Economics 41, no. 10 (2014): 878-95.
Dobler, C. C., C. P. West, and V. M. Montori. "Can Shared Decision Making Improve Physician Well-Being and Reduce Burnout?" Cureus 9, no. 8 (Aug 27 2017): e1615.
Donnelly, Catherine, Lyn Shulha, Don Klinger, and Lori Letts. "Using Program Evaluation to Support Knowledge Translation in an Interprofessional Primary Care Team: A Case Study." BMC Family Practice 17 (2016).
Downar, James, Tracy Luk, Robert W. Sibbald, Tatiana Santini, Joseph Mikhael, Hershl Berman, and Laura Hawryluck. "Why Do Patients Agree to a "Do Not Resuscitate" or "Full Code" Order? Perspectives of Medical Inpatients." Journal of General Internal Medicine 26, no. 6 (Jun 20111): 582-7.
Dreachslin, Janice L. "Diversity Management and Cultural Competence: Research, Practice, and the Business Case." Journal of Healthcare Management 52, no. 2 (Mar/Apr 2007): 79-86.
Drewes, Y. M., J. W. Blom, W. J. Assendelft, T. Stijnen, W. P. den Elzen, and J. Gussekloo. "Variability in Vulnerability Assessment of Older People by Individual General Practitioners: A Cross-Sectional Study." PLoS One 9, no. 11 (2014): e108666.
Dubach, Barbara, and Maria Teresa Machado. "The Importance of Stakeholder Engagement in the Corporate Responsibility to Respect Human Rights." International Review of the Red Cross 94, no. 887 (Sep 2012): 1047-68.
Dudzinski, Denise M. "Commentary: In the Interest of Fairness." Cambridge Quarterly of Healthcare Ethics 22, no. 4 (Oct 2013): 401-2.
299
Duffy, William. "Improving Patient Safety by Practicing in a Just Culture." Association of Operating Room Nurses. AORN Journal 106, no. 1 (Jul 2017): 66-68.
Dunlay, S. M., and J. J. Strand. "How to Discuss Goals of Care with Patients." Trends Cardiovasc Med 26, no. 1 (Jan 2016): 36-43.
Durante, C. "Bioethics in a Pluralistic Society: Bioethical Methodology in Lieu of Moral Diversity." Med Health Care Philos 12, no. 1. 2009.
Dutta, Mohan J. "Reducing Health Disparities: Communication Interventions." In Reducing Health Disparities: Communication Interventions, edited by Gary L. Kreps, 1-14. Vol. 6. New York: Peter Lang Publishing, 2013.
Dzeng, E., A. Colaianni, M. Roland, D. Levine, M. P. Kelly, S. Barclay, and T. J. Smith. "Moral Distress Amongst American Physician Trainees Regarding Futile Treatments at the End of Life: A Qualitative Study." J Gen Intern Med 31, no. 1 (Jan 2016): 93-9.
Edgar, Andrew, and Stephen Pattison. "Flourishing in Health Care." Health Care Analysis : HCA 24, no. 2 (Jun 2016): 161-73.
Eleftheriadis, Pavlos. "A Right to Health Care." 268-85: Wiley-Blackwell, 2012.
Eleftheriadis, Pavlos. "A Right to Health Care." 268-85: Wiley-Blackwell, 2012.
Engelman, Michal, Christopher L. Seplaki, and Ravi Varadhan. "A Quiescent Phase in Human Mortality? Exploring the Ages of Least Vulnerability." Demography 54, no. 3 (Jun 2017): 1097-118.
Epstein, Wendy Netter. "Nudging Patient Decision-Making." Washington Law Review 92, no. 3 (2017): 1255-315.
Erdman, Joanna N. "Human Rights in Health Equity: Cervical Cancer and Hpv Vaccines." American Journal of Law and Medicine 35, no. 2/3 (2009): 365-87.
Ernecoff, N. C., F. A. Curlin, P. Buddadhumaruk, and D. B. White. "Health Care Professionals' Responses to Religious or Spiritual Statements by Surrogate Decision Makers During Goals-of-Care Discussions." JAMA Intern Med 175, no. 10 (Oct 2015): 1662-9.
Eva C. Winkler, Russell L. Gruen. Organizational Ethics. The Sage Handbook of Health Care Ethics: Core and Emerging Issues. Sage Publications Ltd. London: SAGE Publications Ltd. (2011): 73-74.
Ewing, Michael. "The Patient-Centered Medical Home Solution to the Cost-Quality Conundrum." Journal of Healthcare Management 58, no. 4 (Jul/Aug 2013): 258-66.
Fagan, A. "Challenging the Bioethical Application of the Autonomy Principle within Multicultural Societies." J Appl Philos 21, no. 1 (2004): 15-31.
300
Farber Post, Linda, Jeffrey Blustein, and Nancy Neveloff Dubler. Handbook for health care ethics committees. Baltimore: Johns Hopkins University Press. 2015 (2nd edition).
Farber Post, Linda, Jeffrey Blustein, and Nancy Neveloff Dubler. Handbook for health care ethics committees. Baltimore: Johns Hopkins University Press. 2015 (2nd edition).
Fariss, Christopher J. "Respect for Human Rights Has Improved over Time: Modeling the Changing Standard of Accountability." The American Political Science Review 108, no. 2 (May 2014): 297-318.
Farmer, P. Pathologies of Power. Health, Human Rights, and the New War on the Poor. Los Angeles: University of California Press, 2005. 157-159
Fasterling, Björn, and Geert Demuijnck. "Human Rights in the Void? Due Diligence in the Un Guiding Principles on Business and Human Rights." Journal of Business Ethics 116, no. 4 (Sep 2013): 799-814.
Felland, Laurie E., Paul B. Ginsburg, and Gretchen M. Kishbauch. "Improving Health Care Access for Low-Income People: Lessons from Ascension Health's Community Collaboratives." Health Affairs 30, no. 7 (Jul 2011): 290-8.
Fenton, Elizabeth, and John D. Arras. "Bioethics and Human Rights: Curb Your Enthusiasm." Cambridge Quarterly of Healthcare Ethics 19, no. 1 (Jan 2010): 127-33.
Fenton, JD and Fenton, EM. “Bioethics and Human Rights: Access to Health-Related Goods.” Hastings Center Report, Volume 39, Number 5, September-October, 2009, 27-38.
Fiester, Autumn. "Neglected Ends: Clinical Ethics Consultation and the Prospects for Closure." The American Journal of Bioethics 15, no. 1 (2015): 29-36.
Fiscella, K. "Health Care Reform and Equity: Promise, Pitfalls, and Prescriptions." Annals of Family Medicine 9, no. 1 (2011): 78-84.
Fiscella, K., P. Franks, M. P. Doescher, and B. G. Saver. "Disparities in Health Care by Race, Ethnicity, and Language among the Insured: Findings from a National Sample." Med Care 40, no. 1 (2002): 52-9.
Fiscella, K., P. Franks, M. R. Gold, and C. M. Clancy. "Inequality in Quality: Addressing Socioeconomic, Racial, and Ethnic Disparities in Health Care." JAMA 283, no. 19 (2000): 2579- 84.
Fisher, Jill A. "Expanding the Frame of "Voluntariness" in Informed Consent: Structural Coercion and the Power of Social and Economic Context." Kennedy Institute of Ethics Journal 23, no. 4 (Dec 2013): 355-79.
FitzGerald, Chloe, and Samia Hurst. "Implicit Bias in Healthcare Professionals: A Systematic Review." BMC Medical Ethics 18 (2017).
301
Flaming, D. "Appropriate Ethics Review Is Required." Healthc Manage Forum 30, no. 1 (Jan 2017): 46-48.
Fleck, Leonard M. "Choosing Wisely." Cambridge Quarterly of Healthcare Ethics 25, no. 3 (Jul 2016): 366-76.
Fleck, Leonard M. "Just Caring: In Defense of Limited Age-Based Healthcare Rationing." Cambridge Quarterly of Healthcare Ethics 19, no. 1 (Jan 2010): 27-37.
Fleck, Leonard M. "The Costs of Caring: Who Pays? Who Profits? Who Panders?" The Hastings Center Report 36, no. 3 (May/Jun 2006): 13-7.
Fleming, David A. "The Moral Agency of Physician Organizations: Meeting Obligations to Advocate for Patients and the Public." Annals of Internal Medicine 163, no. 12 (2015): 918-21 4p.
Forehand, Aimee. "Mission and Organizational Performance in the Healthcare Industry." Journal of Healthcare Management 45, no. 4 (Jul/Aug 2000): 267-77.
Forman, L. "What Do Human Rights Bring to Discussions of Power and Politics in Health Policy and Systems?" Glob Public Health (Dec 13 2017): 1-14.
Fox, R. C., and J. P. Swazey. "Examining American Bioethics: Its Problems and Prospects." Camb Q Healthc Ethics 14, no. 4 (2005): 361-73.
Frader, Joel E., and Charles L. Bosk. "Mistakes, Medical." In Bioethics, edited by Bruce Jennings, 2107-13. Farmington Hills, MI: Macmillan Reference USA, 2014.
Frintner, M. P., F. S. Mendoza, B. P. Dreyer, W. L. Cull, and D. Laraque. "Resident CrossCultural Training, Satisfaction, and Preparedness." Acad Pediatr 13, no. 1 (2013): 65-71.
Frosch, Dominick L., Suepattra G. May, Katharine A. S. Rendle, Caroline Tietbohl, and Glyn Elwyn. "Authoritarian Physicians and Patients' Fear of Being Labeled 'Difficult' among Key Obstacles to Shared Decision Making." Health Affairs 31, no. 5 (May 2012): 1030-8.
Fung, Constance H., and Ron D. Hays. "Prospects and Challenges in Using Patient-Reported Outcomes in Clinical Practice." Quality of Life Research 17, no. 10 (Dec 2008): 1297-302.
Furumoto-Dawson, A., S. Gehlert, D. Sohmer, O. Olopade, and T. Sacks. "Early-Life Conditions and Mechanisms of Population Health Vulnerabilities." Health Affairs 26, no. 5 (2007): 1238-48.
Gabbay, E., J. Calvo-Broce, K. B. Meyer, T. A. Trikalinos, J. Cohen, and D. M. Kent. "The Empirical Basis for Determinations of Medical Futility." J Gen Intern Med 25, no. 10 (Oct 2010): 1083-9.
302
Gabbay, Ezra, Jose Calvo-broce, Klemens B. Meyer, Thomas A. Trikalinos, Joshua Cohen, and David M. Kent. "The Empirical Basis for Determinations of Medical Futility." Journal of General Internal Medicine 25, no. 10 (Oct 2010): 1083-9.
Galbiati, Roberto, and Pietro Vertova. "Horizontal Equity." Economica 75, no. 298 (2008): 384-91.
Gallagher, Colleen M., and Ryan F. Holmes. "Handling Cases of 'Medical Futility'." HEC Forum 24, no. 2 (Jun 2012): 91-8.
Gard, Carol L., Peggy N. Flannigan, and Maureen Cluskey. "Program Evaluation: An Ongoing Systematic Process." Nursing Education Perspectives 25, no. 4 (Jul/Aug2004): 176-9.
Gardner, Wendi L., and Kristy K. Dean. "Interdependent Self-Construals." In Encyclopedia of Social Psychology, edited by Roy F. Baumeister and Kathleen D. Vohs, 490-92. Thousand Oaks, CA: SAGE Publications, 2007.
Garvelink, Mirjam M., Julie Emond, Matthew Menear, Nathalie Briere, Adriana Freitas, Laura Boland, Maria Margarita Becerra Perez, et al. "Development of a Decision Guide to Support the Elderly in Decision Making About Location of Care: An Iterative, User-Centered Design." Research Involvement and Engagement 2 (2016).
Gauri, Varun. "The Cost of Complying with Human Rights Treaties: The Convention on the Rights of the Child and Basic Immunization." The Review of International Organizations 6, no. 1 (Mar 2011): 33-56.
Gavriloff, Carrie, Sarah Ostrowski-Delahanty, and Kimberly Oldfield. "The Impact of Lean Six Sigma Methodology on Patient Scheduling." Nursing Economics 35, no. 4 (Jul/Aug 2017): 189-93.
General Assembly resolution 70/1, Transforming Our World: The 2030 Agenda for Sustainable Development, A/RES/70/1 (25 September 2015.)
Geros-Willfond, K. N., S. S. Ivy, K. Montz, S. E. Bohan, and A. M. Torke. "Religion and Spirituality in Surrogate Decision Making for Hospitalized Older Adults." J Relig Health 55, no. 3 (Jun 2016): 765-77.
Gibson, Jennifer L, Douglas K Martin, and Peter A Singer. "Setting Priorities in Health Care Organizations: Criteria, Processes, and Parameters of Success." BMC Health Services Research 4, no. 1, 2004. 4-25.
Glickman, Seth W., Kelvin A. Baggett, Christopher G. Krubert, Eric D. Peterson, and Kevin A. Schulman. "Promoting Quality: The Health-Care Organization from a Management Perspective." International Journal for Quality in Health Care 19, no. 6 (2007): 341-8.
Gluyas, Heather. "Patient-Centred Care: Improving Healthcare Outcomes." Nursing Standard (2014+) 30, no. 4 (2015): 50.
303
Gomes, Carlos F., Mahmoud M. Yasin, and Yousef Yasin. "Assessing Operational Effectiveness in Healthcare Organizations: A Systematic Approach." International Journal of Health Care Quality Assurance 23, no. 2 (2010): 127-40.
Gong, Yang, Song Hsing-Yi, Xinshuo Wu, and Lei Hua. "Identifying Barriers and Benefits of Patient Safety Event Reporting toward User-Centered Design." Safety in Health 1 (2015).
Goode, Tawara D., M. Clare Dunne, and Suzanne M. Bronheim. "The Evidence Base for Cultural and Linguistic Competency in Health Care." 2006.
Goold, Susan Dorr. "Trust and the Ethics of Health Care Institutions." The Hastings Center Report 31, no. 6 (2001): 26-33.
Gordon, J. S. "Global Ethics and Principlism." Kennedy Inst Ethics J 21, no. 3 (2011): 251-253.
Gowri, Aditi. "On Corporate Virtue." Journal of Business Ethics 70, no. 4 (Feb 2007): 391-400.
Graber, David R., and Anne Osborne Kilpatrick. "Establishing Values-Based Leadership and Value Systems in Healthcare Organizations." Journal of Health and Human Services Administration 31, no. 2 (Fall 2008): 179-97.
Grabovschi, Cristina, Christine Loignon, and Martin Fortin. "Mapping the Concept of Vulnerability Related to Health Care Disparities: A Scoping Review." BMC Health Services Research 13 (2013): 94.
Grande, Stuart W., Marie-anne Durand, Elliott S. Fisher, and Glyn Elwyn. "Physicians as Part of the Solution? Community-Based Participatory Research as a Way to Get Shared Decision Making into Practice." Journal of General Internal Medicine 29, no. 1 (Jan 2014): 219-22.
Green, C. R., K. O. Anderson, T. A. Baker, L. C. Campbell, S. Decker, R. B. Fillingim, D. A. Kalauokalani, et al. "The Unequal Burden of Pain: Confronting Racial and Ethnic Disparities in Pain." Pain Med 4, no. 3 (2003): 277-94.
Green, M. J., and M. Benzeval. "The Development of Socioeconomic Inequalities in Anxiety and Depression Symptoms over the Lifecourse." Soc Psychiatry Psychiatr Epidemiol 48, no. 12 (Dec 2013): 1951-61.
Grill, K. "Incentives, Equity and the Able Chooser Problem." J Med Ethics 43, no. 3 (Mar 2017): 157-61.
Grill, Kalle. "Incentives, Equity and the Able Chooser Problem." Journal of Medical Ethics 43, no. 3 (Mar 2017): 157.
Gross, Aeyal. "Is There a Human Right to Private Health Care?" The Journal of Law, Medicine & Ethics 41, no. 1 (2013): 138-146.
304
Gruskin, S., and N. Daniels. "Process Is the Point: Justice and Human Rights: Priority Setting and Fair Deliberative Process." Am J Public Health 98, no. 9 (Sep 2008): 1573-7.
Gruskin, Sofia J. D. M. I. A., and Norman PhD Daniels. "Justice and Human Rights: Resource allocation and Fair Deliberative Process." American Journal of Public Health 98, no. 9 (Sep): 1573-7.
Gruskin, Sofia, Dina Bogecho, and Laura Ferguson. "'Rights-Based Approaches' to Health Policies and Programs: Articulations, Ambiguities, and Assessment." Journal of Public Health Policy 31, no. 2 (Jul 2010): 129-45.
Gruskin, Sofia. Perspectives on Health and Human Rights. New York: Routledge, 2005. 3-49
Gu, Y., E. Lancsar, P. Ghijben, J. R. Butler, and C. Donaldson. "Attributes and Weights in Health Care Priority Setting: A Systematic Review of What Counts and to What Extent." Soc Sci Med 146 (Dec 2015): 41-52.
Gulliford, Martin. "Modernizing Concepts of Access and Equity." Health Economics, Policy and Law 4, no. 2 (Apr 2009): 223-30.
Gunn, Jennifer L. "Meeting Rural Health Needs: Interprofessional Practice or Public Health?" Nursing History Review 24 (2016): 90-97.
Gupta, Digant, Mark Rodeghier, and Christopher G. Lis. "Patient Satisfaction with Service Quality as a Predictor of Survival Outcomes in Breast Cancer." Supportive Care in Cancer 22, no. 1 (Jan 2014): 129-34.
Gusmano, Michael K. "Access to Health Care." In Bioethics, edited by Bruce Jennings, 77-81. Farmington Hills, MI: Macmillan Reference USA, 2014.
Gusmano, Michael K. "Do We Really Want to Control Health Care Spending?" Journal of Health Politics, Policy & Law 36, no. 3 (2011): 495-500.
Gusmano, Michael K., Daniel Weisz, and Victor G. Rodwin. "Achieving Horizontal Equity: Must We Have a Single-Payer Health System?"Journal of Health Politics, Policy & Law 34, no. 4 (2009): 617-33.
Gustavsson, E., and L. Sandman. "Health-Care Needs and Shared Decision-Making in Priority-Setting." Med Health Care Philos 18, no. 1 (Feb 2015): 13-22.
Haghighinezhad, G., F. Atashzadeh-Shoorideh, T. Ashktorab, J. Mohtashami, and M. Barkhordari-Sharifabad. "Relationship between Perceived Organizational Justice and Moral Distress in Intensive Care Unit Nurses." Nurs Ethics (Jan 1 2017): 969733017712082.
Hahlweg, Pola, Martin Härter, Yvonne Nestoriuc, and Isabelle Scholl. "How Are Decisions Made in Cancer Care? A Qualitative Study Using Participant Observation of Current Practice." BMJ Open 7, no. 9 (2017).
305
Halabi, Sam. "Selling Hospice." The Journal of Law, Medicine & Ethics 42, no. 4 (December 2014): 442-54.
Hall, Robert T. "Organizational Ethics in Healthcare." In Encyclopedia of Bioethics, edited by Stephen G. Post, 1940-44. New York: Macmillan Reference USA, 2004.
Hall, Robert T. An Introduction to Healthcare Organizational Ethics. Oxford: Oxford University Press, 2000. 41-56.
Hamel, Mary Beth, Jennifer Prah Ruger, Theodore W. Ruger, and George J. Annas. "The Elusive Right to Health Care under U.S. Law." The New England Journal of Medicine 372, no. 26 (2015): 2558-63.
Hamilton, D. F., J. V. Lane, P. Gaston, J. T. Patton, D. MacDonald, A. H. R. W. Simpson, and C. R. Howie. "What Determines Patient Satisfaction with Surgery? A Prospective Cohort Study of 4709 Patients Following Total Joint Replacement”
Hamric, A. B., and E. G. Epstein. "A Health System-Wide Moral Distress Consultation Service: Development and Evaluation." HEC Forum 29, no. 2 (Jun 2017): 127-43.
Hanson, L. C., S. Zimmerman, M. K. Song, F. C. Lin, C. Rosemond, T. S. Carey, and S. L. Mitchell. "Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial." JAMA Intern Med 177, no. 1 (Jan 1 2017): 24-31.
Hardy, Jan, and Tina Barrows. "Key Concepts in Public Health: Vulnerability." London: SAGE Publications Ltd, 2009.
Harle, I., S. Karim, W. Raskin, W. M. Hopman, and C. M. Booth. "Toward Improved Goals-of-Care Documentation in Advanced Cancer: Report on the Development of a Quality Improvement Initiative." Curr Oncol 24, no. 6 (Dec 2017): 383-89.
Harris, C., K. Allen, C. Waller, and V. Brooke. "Sustainability in Health Care by Allocating Resources Effectively (Share) 3: Examining How Resource Allocation Decisions Are Made, Implemented and Evaluated in a Local Healthcare Setting." BMC Health Serv Res 17, no. 1 (May 9 2017): 340.
Harrison, Mark, Katherine Milbers, Marie Hudson, and Nick Bansback. "Do Patients and Health Care Providers Have Discordant Preferences About Which Aspects of Treatments Matter Most? Evidence from a Systematic Review of Discrete Choice Experiments." BMJ Open 7, no. 5 (2017).
Have, H. ten. Vulnerability: Challenging Bioethics. Abingdon, Oxon: Routledge, 2016.
Hawkins, Sara F., and Janice Faan Morse. "The Praxis of Courage as a Foundation for Care." Journal of Nursing Scholarship 46, no. 4 (Jul 2014): 263-70.
Hegtvedt, Karen A., and Jody Clay-Warner. Justice. Bradford, United Kingdom: Emerald Group Publishing Limited, 2008.
306
Helmig, Bernd, Vera Hinz, and Stefan Ingerfurth. "Valuing Organizational Values: Assessing the Uniqueness of Nonprofit Values." Voluntas: International Journal of Voluntary & Nonprofit Organizations 26, no. 6 (2015): 2554-80.
Hernandez, E. M. "Provider and Patient Influences on the Formation of Socioeconomic Health Behavior Disparities among Pregnant Women." Soc Sci Med 82 (Apr 2013): 35-42.
Hernandez, Jill Graper. "Human Value, Dignity, and the Presence of Others." HEC Forum 27, no. 3 (Sep 2015): 249-63.
Hessler, Kristen, and Allen Buchanan. "Equality, Democracy and the Human Right to Health Care." In Medicine and Social Justice: Essays on the Distribution of Health Care, Second ed. New York: Oxford University Press, 2012. 97-104.
Higgs, M., R. Fernandez, S. Polis, and V. Manning. "Similarities and Differences in Nurse-Reported Care Rationing between Critical Care, Surgical, and Medical Specialties." J Patient Saf (Nov 2 2016).
Hilmer, Sarah N., Danijela Gnjidic, and David G. Le Couteur. "Thinking through the Medication List: Appropriate Prescribing and Deprescribing in Robust and Frail Older Patients." Australian Family Physician 41, no. 12 (Dec 2012): 924-8.
Himmelstein, David U., and Steffie Woolhandler. "The Current and Projected Taxpayer Shares of Us Health Costs." American Journal of Public Health 106, no. 3 (2016): 449-52.
Hoffmaster, Barry. "What Does Vulnerability Mean?" Hastings Center Report 36, no. 2 (2017-03-21 2006): 38-45.
Hosseinpoor, Ahmad Reza, Nicole Bergen, and Anne Schlotheuber. "Promoting Health Equity: Who Health Inequality Monitoring at Global and National Levels." Global Health Action 8 (2015).
"How to Increase Socially Responsible Change." In Change Management Excellence, edited by Sarah Cook, Steve Macaulay and Hilary Coldicott, 210-14. London: Kogan Page, 2004.
Hsia, Renee Yuen-Jan, and Yu-Chu Shen. "Rising Closures of Hospital Trauma Centers Disproportionately Burden Vulnerable Populations." Health Affairs 30, no. 10 (Oct 2011): 1912-20.
Hsieh, Ching-Hsing. "A Concept Analysis of Social Capital within a Health Context." Nursing Forum 43, no. 3 (2008): 151-9.
Huesch, Marco D. "One and Done? Equality of Opportunity and Repeated Access to Scarce, Indivisible Medical Resources." BMC Medical Ethics 13 (2012): 11.
Huff, Robert M., Michael V. Kline, and Darleen V. Peterson, eds. Health Promotion in Multicultural Populations: A Handbook for Practitioners and Students. Third edition. ed. Thousand Oaks: Sage, 2015, chapter 1.
307
Hulshof, Peter J., Richard J. Boucherie, Erwin W. Hans, and Johann L. Hurink. "Tactical Resource Allocation and Elective Patient Admission Planning in Care Processes." Health Care Management Science 16, no. 2 (Jun 2013): 152-66.
Hunt, L. Inventing Human Rights. A History. New York/London: W.W. Norton & Company, 2008. 19-22
Hutchison, Lauren A., Donna S. Raffin-Bouchal, Charlotte A. Syme, Patricia D. Biondo, and Jessica E. Simon. "Readiness to Participate in Advance Care Planning: A Qualitative Study of Renal Failure Patients, Families and Healthcare Providers." Chronic Illness 13, no. 3 (Sep 2017): 171-87.
Huynh, T. N., E. C. Kleerup, P. P. Raj, and N. S. Wenger. "The Opportunity Cost of Futile Treatment in the Icu*." Crit Care Med 42, no. 9 (Sep 2014): 1977-82.
Hwang, Stephen W. M. D. M. P. H., Joanna J. M. B. A. Ueng, Shirley M. A. Chiu, Alex PhD Kiss, George PhD M. P. H. Tolomiczenko, Laura BScN Cowan, Wendy M. D. Levinson, and Donald A. M. D. Mshsr Redelmeier. "Universal Health Insurance and Health Care Access for Homeless Persons." American Journal of Public Health 100, no. 8 (Aug 2010): 1454-61.
Illhardt, Franz-Josef. "Conflict between a Patient's Family and the Medical Team." HEC Forum 19, no. 4 (Dec 2007): 381-8.
Iltis, Ana Smith,. "Values Based Decision Making: Organizational Mission and Integrity." HEC Forum 17, no. 1 (Mar 2005): 6-17.
Institute for Healthcare Improvement. “Patient Safety: Overview.” Accessed January 13, 2018. http://www.ihi.org/Topics/PatientSafety/Pages/Overview.aspx
International Bioethics Committee of UNESCO. On Social Responsibility and Health. 2010.
International Bioethics Committee: Report on Social Responsibility and Health. United Nations Educational, Scientific and Cultural Organization. France 2010.
International Bioethics Committee: Report on the Principle of Respect for Human Vulnerability and Human Integrity. United Nations Educational, Scientific and Cultural Organization. France 2013.
Iserson, Kenneth V. "Providing Ethical Healthcare in Resource-Poor Environments." HEC Forum (January 19 2018).
James, Brent C., and Lucy A. Savitz. "How Intermountain Trimmed Health Care Costs through Robust Quality Improvement Efforts.” Health Affairs 30, no. 6 (Jun 2011): 1185-91.
Jan Helge Solbakk: Vulnerability: A futile or useful principle in Healthcare Ethics? In: Ruth Chadwick, Henk ten Have and Eric M. Meslin (Eds): The SAGE Handbook of Health Care Ethics: Core and Emerging Issues. SAGE Publishers, Los
308
Jan, S. "Proceduralism and Its Role in Economic Evaluation and Priority Setting in Health." Soc Sci Med 108 (May 2014): 257-61.
Jansky, Maximiliane, Gabriella Marx, Friedemann Nauck, and Bernd Alt-Epping. "Physicians' and Nurses' Expectations and Objections toward a Clinical Ethics Committee." Nursing Ethics 20, no. 7 (Nov 2013): 771-83.
Jecker, N. S. "Doing What We Shouldn't: Medical Futility and Moral Distress." Am J Bioeth 17, no. 2 (Feb 2017): 41-43.
Jecker, Nancy S. "Justice." In Bioethics, edited by Bruce Jennings, 1774-84. Farmington Hills, MI: Macmillan Reference USA, 2014.
Jiang, H. Joanna PhD, Carlin Lockee, Karma Fache Bass, Irene PhD Fraser, and Eric P. Fache Norwood. "Board Oversight of Quality: Any Differences in Process of Care and Mortality?" Journal of Healthcare Management 54, no. 1 (Jan/Feb
Jiang, Z., L. Yang, P. Guo, and S. Gong. "Autonomy and Authority in Medical Futility." J Biomed Res 28, no. 6 (Nov 2014): 433-4.
Jiang, Z., L. Yang, P. Guo, and S. Gong. "Medical Futility in the Era of Evidence-Based Medicine." J Biomed Res 28, no. 4 (Jul 2014): 249-50.
Joffe, Steven, and Jennifer W. Mack. "Deliberation and the Life Cycle of Informed Consent." Hastings Center Report 44, no. 1 (2018-01-13 2014): 33-35.
Jones, D. Scott. "Reporting Adverse Medical Events: Quality Reporting Meets Compliance." Journal of Health Care Compliance 14, no. 4 (2012): 53-76.
Jones, David S. M. D. PhD, Scott H. M. D. Podolsky, and Jeremy A. M. D. PhD Greene. "The Burden of Disease and the Changing Task of Medicine." The New England Journal of Medicine 366, no. 25 (2012): 2333-8.
Jonsen, Albert R., Marc Siegler, and William J. Winslade. 2015 (8th edition). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. New York: McGraw Hill Education.
Joseph, R. "Hospital Policy on Medical Futility - Does It Help in Conflict Resolution and Ensuring Good End-of-Life Care?" Ann Acad Med Singapore 40, no. 1 (Jan 2011): 19-25.
Juckett, G. "Cross-Cultural Medicine." Am Fam Physician 72, no. 11 (2005): 2267-74.
Jukic, M., L. Saric, I. Prkic, and L. Puljak. "Medical Futility Treatment in Intensive Care Units." Acta Med Acad 45, no. 2 (Nov 2016): 135-44.
309
Jurkiewicz, Carole L., and Carolyn R. Thompson. "Conflict of Interest: Organizational Vs. Executive Ethics in Health Care." Journal of Health and Human Services Administration 23, no. 1 (2000): 100-23.
Kachalia, Allen M. D. J. D. "Improving Patient Safety through Transparency." The New England Journal of Medicine 369, no. 18 (2013): 1677-9.
Kane, P. M., F. E. Murtagh, K. Ryan, N. G. Mahon, B. McAdam, R. McQuillan, C. Ellis-smith, et al. "The Gap between Policy and Practice: A Systematic Review of Patient-Centered Care Interventions in Chronic Heart Failure." Heart Failure Reviews 20, no. 6 (Nov 2015): 673-87.
Kapiriri, L., and D. Razavi. "How Have Systematic Priority Setting Approaches Influenced Policy Making? A Synthesis of the Current Literature." Health Policy 121, no. 9 (Sep 2017): 937-46.
Kaplan, Heather C., Patrick W. Brady, Michele C. Dritz, David K. Hooper, W. Matthew Linam, Craig M. Froehle, and Peter Margolis. "The Influence of Context on Quality Improvement Success in Health Care: A Systematic Review of the Literature”
Kaufman, Arnold S. "Responsibility, Moral and Legal." In Encyclopedia of Philosophy, edited by Donald M. Borchert, 444-51. Detroit: Macmillan Reference USA, 2006.
Keegan, Theresa H. M., Allison W. Kurian, Kathleen Gali, Tao Li, Daphne Y. Lichtensztajn, Dawn L. Hershman, Laurel A. Habel, Bette J. Caan, and Scarlett L. Gomez. "Research and Practice. Racial/Ethnic and Socioeconomic Differences in Short-Term Breast Cancer Survival among Women in an Integrated Health System." American Journal of Public Health 105, no. 5 (2015): 938-46.
Keegan, Theresa H. M., Allison W. Kurian, Kathleen Gali, Tao Li, Daphne Y. Lichtensztajn, Dawn L. Hershman, Laurel A. Habel, Bette J. Caan, and Scarlett L. Gomez. "Research and Practice. Racial/Ethnic and Socioeconomic Differences in Short-Term Breast Cancer Survival among Women in an Integrated Health System." American Journal of Public Health 105, no. 5 (2015): 938-46.
Kekewich, M., J. Landry, and V. Roth. "How Should Health Leaders Approach Morally Contentious Policy Issues?" Healthc Manage Forum 31, no. 1 (Jan 2018): 29-31.
Kelleher, J. Paul. "Beneficence, Justice, and Health Care." Kennedy Institute of Ethics Journal 24, no. 1 (Mar 2014 2014-08-12 2014): 27-49.
Kelley, Michele A. "Cultural Competency." In Encyclopedia of Health Services Research, edited by Ross M. Mullner, 270-274. Thousand Oaks, CA: SAGE Publications, Inc., 2009. doi: 10.4135/9781412971942.n98.
Kennedy, Denise M. M. B. A., Richard J. M. D. Caselli, Leonard L. PhD Berry, and Pooja Fache Mishra. "A Roadmap for Improving Healthcare Service Quality/Practitioner
310
Application." Journal of Healthcare Management 56, no. 6 (Nov/Dec 2011): 385-400; discussion 00-2.
Kerby, Rob. "Welfare and Poverty." In Encyclopedia of Politics, edited by Rodney P. Carlisle. The Left, 489-91. Thousand Oaks, CA: SAGE Reference, 2005.
Khorakian, Alireza, Yaghoob Maharati, and Hanzaleh Zeydvand Lorestany. "Virtuousness and Effectiveness in Hospitals: The Moderating Role of Organizational Culture." Advances in Management and Applied Economics 6, no. 4 (2016): 45-66.
Khushf, George, James Raymond, and Charles Beaman. "The Institute of Medicine's Reports on Quality and Safety: Paradoxes and Tensions." HEC Forum 20, no. 1 (2008): 1-14.
Kieslich, Katharina, and Peter Littlejohns. "Does Accountability for Reasonableness Work? A Protocol for a Mixed Methods Study Using an Audit Tool to Evaluate the Decision-Making of Clinical Commissioning Groups in England." BMJ Open 5, no. 7 (2015).
Kilner, John F. "Healthcare Resources, Allocation Of: I. Macroallocation." In Encyclopedia of Bioethics, edited by Stephen G. Post, 1098-107. New York: Macmillan Reference USA, 2004.
Kilpatrick, Shelley Dean. "Helping Behavior." In Encyclopedia of Social Psychology, edited by Roy F. Baumeister and Kathleen D. Vohs, 420-24. Thousand Oaks, CA: SAGE Publications, 2007.
Kim, Linda, Courtney H. Lyder, Donna McNeese-Smith, Linda Searle Leach, and Jack Needleman. "Defining Attributes of Patient Safety through a Concept Analysis." Journal of Advanced Nursing 71, no. 11 (2015): 2490-503.
Kinnear, John, and Ruth Jackson. "Constructing Diagnostic Likelihood: Clinical Decisions Using Subjective Versus Statistical Probability." Postgraduate Medical Journal 93, no. 1101 (Jul 2017): 425.
Kinney, Eleanor D. "Realization of the International Human Right to Health in an Economically Integrated North America." The Journal of Law, Medicine & Ethics 37, no. 4 (2009): 807-818.
Knight, Carl, and Andreas Albertsen. "Rawlsian Justice and Palliative Care." Bioethics 29, no. 8 (Oct 2015): 536-42.
Ko, Michelle, Julia Murphy, and Andrew B. Bindman. "Integrating Health Care for the Most Vulnerable: Bridging the Differences in Organizational Cultures between Us Hospitals and Community Health Centers." American Journal of Public Health 105, no. S5 (2015): S676-S79.
Kocarnik, Jonathan M. "Disclosing Controversial Risk in Informed Consent: How Serious Is Serious?" American Journal of Bioethics 14, no. 4 (2014): 13-14.
311
Kopolow, Andrew M., and Louis E. Kopolow. "Corporate Social Responsibility in Health." In Bioethics, edited by Bruce Jennings, 715-18. Farmington Hills, MI: Macmillan Reference USA, 2014.
Krehbiel, Patricia J., and Russell Cropanzano. "Procedural Justice, Outcome Favorability and Emotion." Social Justice Research 13, no. 4 (December 2000): 339-60.
Krieger, N. "Health Equity and the Fallacy of Treating Causes of Population Health as If They Sum to 100." Am J Public Health 107, no. 4 (Apr 2017): 541-49.
Kronenfeld, Jennie, Wendy Parmet, and Mark Zezza. "Debates on U.S. Health Care: Health Care as a Human Right." Thousand Oaks, California: SAGE Publications, Inc., 2012.
Kte'pi, Bill. "Equity and Equality." In Multicultural America: A Multimedia Encyclopedia, edited by Carlos E. Cortés Thousand Oaks, California: SAGE Publications, Inc., 2013.
Kulkarni, K., S. J. Karssiens, H. Massie, and H. Pandit. "Smoking and Orthopaedic Surgery: Does the Evidence Support Rationing of Care?" Musculoskeletal Care 15, no. 4 (Dec 2017): 400-04.
Kvist, Tarja, Ari Voutilainen, Raija Mäntynen, and Katri Vehviläinen-Julkunen. "The Relationship between Patients' Perceptions of Care Quality and Three Factors: Nursing Staff Job Satisfaction, Organizational Characteristics and Patient”
Ladin, Keren PhD, and Douglas W. Hanto. "Rationing Lung Transplants -- Procedural Fairness in Allocation and Appeals." The New England Journal of Medicine 369, no. 7 (2013): 599-601.
Lakes, Kimberley D., Elaine Vaughan, Marissa Jones, Wylie Burke, Dean Baker, and James M. Swanson. "Diverse Perceptions of the Informed Consent Process: Implications for the Recruitment and Participation of Diverse Communities in the National Children's Study." American Journal of Community Psychology 49, no. 1-2 (Mar 2012): 215-32.
Landwehr, C., and D. Klinnert. "Value Congruence in Health Care Priority Setting: Social Values, Institutions and Decisions in Three Countries." Health Econ Policy Law 10, no. 2 (Apr 2015): 113-32.
Lane, Haylee, Mitchell Sarkies, Jennifer Martin, and Terry Haines. "Equity in Healthcare Resource Allocation Decision Making: A Systematic Review." Social Science & Medicine 175 (Feb 2017): 11.
Latham, Stephen R. "Justice and the Financing of Health Care." In The Blackwell Guide to Medical Ethics, 341-53: Blackwell Publishing Ltd, 2008.
LaVeist, T. A., D. Gaskin, and P. Richard. "The Economic Burden of Health Inequalities in the United States." 2009.
312
Lawrence, David, Lauren Weigel, Paul Dale, Betsy Drph Smith, and Michael Honaker. "Presenting Stage in Colon Cancer Is Associated with Insurance Status." The American Surgeon 83, no. 7 (Jul 2017): 728-32.
Légaré, France, and Holly O. Witteman. "Shared Decision Making: Examining Key Elements and Barriers to Adoption into Routine Clinical Practice." Health Affairs 32, no. 2 (Feb 2013): 276-84.
Leicht, Karl-heinz, Wilfried Honekamp, and Herwig Ostermann. "Quality Management in Professional Medical Practices: Are There Effects on Patient Satisfaction?" Journal of Public Health 21, no. 5 (Oct 2013): 465-71.
Lemmens, Trudo, and Candice Telfer. "Access to Information and the Right to Health: The Human Rights Case for Clinical Trials Transparency." American Journal of Law and Medicine 38, no. 1 (2014-03-06 2012): 63-112.
Leppin, Aaron L., Marleen Kunneman, Julie Hathaway, Cara Fernandez, Victor M. Montori, and Jon C. Tilburt. "Getting on the Same Page: Communication, Patient Involvement and Shared Understanding of "Decisions" in Oncology." Health Expectations 21, no. 1 (Feb 2018): 110-17.
Levine, Deborah J., and Jessica Mulligan. "Overutilization, Overutilized." Journal of Health Politics, Policy & Law 40, no. 2 (2015): 421-37.
Levine, Mark A., Matthew K. Wynia, Paul M. Schyve, J. Russell Teagarden, David A. Fleming, Donohue Sharon King, J. Anderson Ron, James Sabin, and Ezekiel J. Emanuel. "Improving Access to Health Care: A Consensus Ethical Framework to Guide Proposals for Reform." The Hastings Center Report 37, no. 5 (2007): 14-19.
Lewis, Geraint, Heather Kirkham, Ian Duncan, and Rhema Vaithianathan. "How Health Systems Could Avert 'Triple Fail' Events That Are Harmful, Are Costly, and Result in Poor Patient Satisfaction." Health Affairs 32, no. 4 (Apr 2013):
Lewis, J. A., M. G. Williams, E. J. Peppers, and C. A. Gadson. "Applying Intersectionality to Explore the Relations between Gendered Racism and Health among Black Women." J Couns Psychol 64, no. 5 (Oct 2017): 475-86.
Liang, Y. H., C. H. Wei, W. H. Hsu, Y. Y. Shao, Y. C. Lin, P. C. Chou, A. L. Cheng, and K. H. Yeh. "Do-Not-Resuscitate Consent Signed by Patients Indicates a More Favorable Quality of End-of-Life Care for Patients with Advanced Cancer." Support Care Cancer 25, no. 2 (Feb 2017): 533-39.
Lie, D. A., E. Lee-Rey, A. Gomez, S. Bereknyei, and C. H. Braddock, 3rd. "Does Cultural Competency Training of Health Professionals Improve Patient Outcomes? A Systematic Review and Proposed Algorithm for Future Research." J Gen Intern Med 26, no. 3 (2011): 317-25.
313
Like, Robert C. "Educating Clinicians About Cultural Competence and Disparities in Health and Health Care." Journal of Continuing Education in the Health Professions 31, no. 3 (2011): 196-206.
Liu, Tsai-Ling, A. SidneyBarritt Iv, Morris Weinberger, John E. Paul, Bruce Fried, and Justin G. Trogdon. "Who Treats Patients with Diabetes and Compensated Cirrhosis." PLoS One 11, no. 10 (Oct 2016).
Lo, Bernard. Resolving ethical dilemmas: a guide for clinicians: Lippincott Williams & Wilkins. 2013.
Lofgren, Richard, Michael Karpf, Jay Perman, and Courtney M Higdon. "The Us Health Care System Is in Crisis: Implications for Academic Medical Centers and Their Missions." Academic Medicine 81, no. 8 (2006): 713-20.
Lyell, David, Farah Magrabi, Magdalena Z. Raban, L. G. Pont, Melissa T. Baysari, Richard O. Day, and Enrico Coiera. "Automation Bias in Electronic Prescribing." BMC Medical Informatics and Decision Making 17 (2017).
Lynch, HF. Conflicts of Conscience in Health Care. An Institutional Compromise. MIT Press, 2008.
Lynch, John, Smith George Davey, Marianne Hillemeier, Mary Shaw, and et al. "Income Inequality, the Psychosocial Environment, and Health: Comparisons of Wealthy Nations." The Lancet 358, no. 9277 (2001): 194-200.
Lynn, Joanne, Mary Ann Baily, Melissa Bottrell, Bruce Jennings, Robert J. Levine, Frank Davidoff, David Casarett, et al. "The Ethics of Using Quality Improvement Methods in Health Care." Annals of Internal Medicine 146, no. 9 (2007): 666-W161.
Maak, Thomas. "Undivided Corporate Responsibility: Towards a Theory of Corporate Integrity." Journal of Business Ethics 82, no. 2 (Oct 2008): 353-68.
Madsen, Richard. "Individualism." In Encyclopedia of Community, edited by Karen Christensen and David Levinson, 648-51. Thousand Oaks, CA: SAGE Reference, 2003.
Magelssen, M., I. Miljeteig, R. Pedersen, and R. Forde. "Roles and Responsibilities of Clinical Ethics Committees in Priority Setting." BMC Med Ethics 18, no. 1 (Dec 1 2017): 68.
Maier-Lorentz, M. M. "Transcultural Nursing: Its Importance in Nursing Practice." J Cult Divers 15, no. 1 (2008): 37-43.
Malaiyandi, D. P., G. V. Henderson, and M. A. Rubin. "Transfusion of Blood Products in the Neurocritical Care Unit: An Exploration of Rationing and Futility." Neurocrit Care (Dec 29 2017).
Mant, Jonathan. "Process Versus Outcome Indicators in the Assessment of Quality of Health Care." International Journal for Quality in Health Care 13, no. 6 (2001): 475.
314
Mantel, Jessica. "Ethical Integrity in Health Care Organizations: Currents in Contemporary Bioethics." Journal of Law, Medicine & Ethics 43, no. 3 (Fall 2015): 661-65.
Marckmann, G., and J. In der Schmitten. "Financial Toxicity of Cancer Drugs: Possible Remedies from an Ethical Perspective." Breast Care (Basel) 12, no. 2 (May 2017): 81-85.
Marcum, James A. "Clinical Decision-Making, Gender Bias, Virtue Epistemology, and Quality Healthcare." Topoi: An International Review of Philosophy 36, no. 3 (2017-12-19 2017): 501-08.
Marcus, Brian S., Gary Shank, Jestin N. Carlson, and Arvind Venkat. "Qualitative Analysis of Healthcare Professionals' Viewpoints on the Role of Ethics Committees and Hospitals in the Resolution of Clinical Ethical Dilemmas." HEC Forum 27, no. 1 (March 2015): 11-34.
Margenthaler, Julie A., and David Facs Ollila. "Breast Conservation Therapy Versus Mastectomy: Shared Decision-Making Strategies and Overcoming Decisional Conflicts in Your Patients." Annals of Surgical Oncology 23, no. 10 (Oct 2016): 3133-37.
Margolis, B., L. Chen, M. K. Accordino, G. Clarke Hillyer, J. Y. Hou, A. I. Tergas, W. M. Burke, et al. "Trends in End-of-Life Care and Health Care Spending in Women with Uterine Cancer." Am J Obstet Gynecol 217, no. 4 (Oct 2017): 434.e1-34.e10.
Marmot, Michael. "Achieving Health Equity: From Root Causes to Fair Outcomes." The Lancet 370, no. 9593 (2007): 1153-63.
Martin, Angela K., Nicolas Tavaglione, and Samia Hurst. "Resolving the Conflict: Clarifying 'Vulnerability' in Health Care Ethics." Kennedy Institute of Ethics Journal 24, no. 1 (Mar 2014): 51-72.
Martin, L. J., M. H. Roper, L. Grandjean, R. H. Gilman, J. Coronel, L. Caviedes, J. S. Friedland, and D. A. Moore. "Rationing Tests for Drug-Resistant Tuberculosis - Who Are We Prepared to Miss?" BMC Med 14 (Mar 23 2016): 30.
Massetti, G. M., C. C. Thomas, and K. R. Ragan. "Disparities in the Context of Opportunities for Cancer Prevention in Early Life." Pediatrics 138, no. Suppl 1 (Nov 2016): S65-S77.
Mattarozzi, Katia, Valentina Colonnello, Francesco De Gioia, and Alexander Todorov. "I Care, Even after the First Impression: Facial Appearance-Based Evaluations in Healthcare Context." Social Science & Medicine 182 (Jun 2017): 68.
Matthew Lee, Smith, Thomas R. Prohaska, Kara E. MacLeod, Marcia G. Ory, Amy R. Eisenstein, David R. Ragland, Cheryl Irmiter, Samuel D. Towne, and William A. Satariano. "Non-Emergency Medical Transportation Needs of Middle-Aged and Older Adults: A Rural-Urban Comparison in Delaware, USA." International Journal of Environmental Research and Public Health 14, no. 2 (2017): 174.
315
Mbugua, K. "Respect for Cultural Diversity and the Empirical Turn in Bioethics: A Plea for Caution." J Med Ethics Hist Med 5 (2012): 1.
McAlearney, Ann Scheck ScD, and Peter W. Butler. "Using Leadership Development Programs to Improve Quality and Efficiency in Healthcare." Journal of Healthcare Management 53, no. 5 (Sep/Oct 2008): 319-31; discussion 31-2.
McCormack, Richard, Ryan Michels, Nicholas Ramos, Lorraine Hutzler, James Slover, Joseph Bosco, and Arby Facs Khan. "Thirty-Day Readmission Rates as a Measure of Quality: Causes of Readmission after Or”
McCullough, Laurence B. "Practicing Preventive Ethics--the Keys to Avoiding Ethical Conflicts in Health Care." Physician Executive 31, no. 2 (2005): 18-21.
McDonald, Robert, E. "An Investigation of Innovation in Nonprofit Organizations: The Role of Organizational Mission." Nonprofit & Voluntary Sector Quarterly 36, no. 2 (2007): 256-81.
McQuoid-Mason, D. J. "Should Doctors Provide Futile Medical Treatment If Patients or Their Proxies Are Prepared to Pay for It?" S Afr Med J 107, no. 2 (Jan 30 2017): 108-09.
Mechanic, David, and Jennifer Tanner. "Vulnerable People, Groups, and Populations: Societal View." Health Affairs 26, no. 5 (2007): 1220-30.
Meier, B. M., and W. Onzivu. "The Evolution of Human Rights in World Health Organization Policy and the Future of Human Rights through Global Health Governance." Public Health 128, no. 2 (Feb 2014): 179-87.
Mein Goh, Jie, Guodong Gao, and Ritu Agarwal. "The Creation of Social Value: Can an Online Health Community Reduce Rural–Urban Health Disparities?" MIS Quarterly 40, no. 1 (2016): 247-63.
Meltzer, David O., and Jeanette W. Chung. "The Population Value of Quality Indicator Reporting: A Framework for Prioritizing Health Care Performance Measures." Health Affairs 33, no. 1 (Jan 2014): 132-9.
Mena, Sébastien, Marieke de Leede, Dorothée Baumann, Nicky Black, Sara Lindeman, and Lindsay McShane. "Advancing the Business and Human Rights Agenda: Dialogue, Empowerment, and Constructive Engagement." Journal of Business Ethics 93, no. 1 (Apr 2010): 161-88.
Mende, Susan, and Deborah Roseman. "The Aligning Forces for Quality Experience: Lessons on Getting Consumers Involved in Health Care Improvements." Health Affairs 32, no. 6 (Jun 2013): 1092-100.
Menzel, Paul T. "Setting Priorities for a Basic Minimum of Accessible Health Care." In Medicine and Social Justice: Essays on the Distribution of Health Care, Second ed. New York: Oxford University Press, 2012. 131-141.
316
Meyerson, Denise. "Innovative Surgery and the Precautionary Principle." Journal of Medicine and Philosophy 38, no. 6 (2013): 605-24.
Millar, Ross. "Framing Quality Improvement Tools and Techniques in Healthcare." Journal of Health Organization and Management 27, no. 2 (2013): 209-24.
Misak, C. J., D. B. White, and R. D. Truog. "Medically Inappropriate or Futile Treatment: Deliberation and Justification." J Med Philos 41, no. 1 (Feb 2016): 90-114.
Mitchell, Melanie A. "Assessing Patient Decision-Making Capacity: It's About the Thought Process." Journal of Emergency Nursing 41, no. 4 (Jul 2015): 307-12.
Mitton, Craig, Francois Dionne, and Cam Donaldson. "Managing Healthcare Budgets in Times of Austerity: The Role of Program Budgeting and Marginal Analysis." Applied Health Economics and Health Policy 12, no. 2 (Apr 2014): 95-102.
Mohammed, Shan, and Elizabeth Peter. "Rituals, Death and the Moral Practice of Medical Futility." Nursing Ethics 16, no. 3 (May 2009): 292-302.
Mohindra, R. K. "Medical Futility: A Conceptual Model." J Med Ethics 33, no. 2 (Feb 2007): 71-5.
Molina, Kristine, and Yenisleidy Simon. "Everyday Discrimination and Chronic Health Conditions among Latinos: The Moderating Role of Socioeconomic Position." Journal of Behavioral Medicine 37, no. 5 (2014): 868-80 13p.
Molina, Kristine, and Yenisleidy Simon. "Everyday Discrimination and Chronic Health Conditions among Latinos: The Moderating Role of Socioeconomic Position." Journal of Behavioral Medicine 37, no. 5 (2014): 868-80 13p.
Moosa, Mohammed Rafique, Jonathan David Maree, Maxwell T. Chirehwa, and Solomon R. Benatar. "Use of the 'Accountability for Reasonableness' Approach to Improve Fairness in Accessing Dialysis in a Middle-Income Country." PLoS One 11, no. 10 (Oct 2016).
Morata, L. "An Evolutionary Concept Analysis of Futility in Health Care." J Adv Nurs (Jan 19 2018).
Moye, Jennifer, Casey Catlin, Jennifer Kwak, Erica Wood, and Pamela B. Teaster. "Ethical Concerns and Procedural Pathways for Patients Who Are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice." HEC Forum 29, no. 2 (Jun 2017): 171-89.
Mt, Joannathan. "Process Versus Outcome Indicators in the Assessment of Quality of Health Care." International Journal for Quality in Health Care 13, no. 6 (2001): 475.
Murphy, Matthew, and Jordi Vives. "Perceptions of Justice and the Human Rights Protect, Respect, and Remedy Framework." Journal of Business Ethics 116, no. 4 (Sep 2013): 781-97.
317
Myers, J. "Measuring Quality of End-of-Life Communication and Decision-Making: Do We Have This Right?" Cmaj 189, no. 30 (Jul 31 2017): E978-e79.
Naidu, Aditi. "Factors Affecting Patient Satisfaction and Healthcare Quality." International Journal of Health Care Quality Assurance 22, no. 4 (2009): 366-81.
Narayan, Mary Curry. "Six Steps toward Cultural Competence: A Clinician’s Guide." Home Health Care Management & Practice 14, no. 1 (2001): 40-48.
Nates, J. L., M. Nunnally, R. Kleinpell, S. Blosser, J. Goldner, B. Birriel, C. S. Fowler, et al. "Icu Admission, Discharge, and Triage Guidelines: A Framework to Enhance Clinical Operations, Development of Institutional Policies, and Further Research." Crit Care Med 44, no. 8 (Aug 2016): 1553-602.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Bethesda, Md.: The Commission, 1978.
National Quality Forum. “Serious Reportable Events.” 2008.http://www.qualityforum.org/topics/sres/serious_reportable_events.aspx
Ndumbe-eyoh, Sume, and Agnes Mazzucco. "Social Media, Knowledge Translation, and Action on the Social Determinants of Health and Health Equity: A Survey of Public Health Practices." Journal of Public Health Policy 37 (Nov 2016): 249-59.
Nedjat-Haiem, F. R., I. V. Carrion, K. Gonzalez, K. Ell, B. Thompson, and S. I. Mishra. "Exploring Health Care Providers' Views About Initiating End-of-Life Care Communication." Am J Hosp Palliat Care 34, no. 4 (May 2017): 308-17.
Nelson, C. M., and B. A. Nazareth. "Nonbeneficial Treatment and Conflict Resolution: Building Consensus." Perm J 17, no. 3 (Summer 2013): 23-7.
Nelson, W. A. "The Ethics of Avoiding Nonbeneficial Healthcare: Unnecessary Treatment Has Both Financial and Moral Implications." Healthc Exec 27, no. 6 (Nov-Dec 2012): 48, 50-1.
Nelson, William A., Julia Neily, Peter Mills, and William B. Weeks. "Collaboration of Ethics and Patient Safety Programs: Opportunities to Promote Quality Care." HEC Forum 20, no. 1 (2008): 15-27.
Nelson, William A., William B. Weeks, Justin M. Campfield, and Les MacLeod. "The Organizational Costs of Ethical Conflicts." Journal of Healthcare Management 53, no. 1 (Jan/Feb 2008): 41-52; discussion 52-3.
Neville, T. H., A. Ziman, and N. S. Wenger. "Blood Products Provided to Patients Receiving Futile Critical Care." J Hosp Med 12, no. 9 (Sep 2017): 739-42.
318
Neville, T. H., J. F. Wiley, E. S. Holmboe, C. H. Tseng, P. Vespa, E. C. Kleerup, and N. S. Wenger. "Differences between Attendings' and Fellows' Perceptions of Futile Treatment in the Intensive Care Unit at One Academic Health Center: Implications for Training." Acad Med 90, no. 3 (Mar 2015): 324-30.
Nix, Kathryn A., and John S. O'Shea. "Improving Healthcare Quality in the United States: A New Approach." Southern Medical Journal 108, no. 6 (2015): 359-63.
Nordhaug, M., and P. Nortvedt. "Justice and Proximity: Problems for an Ethics of Care." Health Care Anal 19, no. 1 (Mar 2011): 3-14.
Norheim, O. F., R. Baltussen, M. Johri, D. Chisholm, E. Nord, D. Brock, P. Carlsson, et al. "Guidance on Priority Setting in Health Care (Gps-Health): The Inclusion of Equity Criteria Not Captured by Cost-Effectiveness Analysis." Cost Eff Resour Alloc 12 (2014): 18.
Nunes, R., and G. Rego. "Priority Setting in Health Care: A Complementary Approach." Health Care Anal 22, no. 3 (Sep 2014): 292-303.
Oczkowski, S. "Antimicrobial Stewardship Programmes: Bedside Rationing by Another Name?" J Med Ethics 43, no. 10 (Oct 2017): 684-87.
Odekon, Mehmet. " Equity in Health” The Sage Encyclopedia of World Poverty Thousand Oaks, California: SAGE Publications, Inc, 2015.
Odekon, Mehmet. "Equity and Efficiency Tradeoff." In The SAGE Encyclopedia of World Poverty Thousand Oaks
Oei, Grace. "Explicit Versus Implicit Rationing: Let's Be Honest." American Journal of Bioethics 16, no. 7 (2018-01-13 2016): 68-70.
Office of the High Commissioner, United Nations. Guiding Principles on Business and Human Rights: Implementing the United Nations "Protect, Respect and Remedy" Framework. New York and Geneva: United Nations, 2011.
Ohr, S., S. Jeong, and P. Saul. "Cultural and Religious Beliefs and Values, and Their Impact on Preferences for End-of-Life Care among Four Ethnic Groups of Community-Dwelling Older Persons." J Clin Nurs 26, no. 11-12 (Jun 2017): 1681-89.
Oliver, A., and E. Mossialos. "Equity of Access to Health Care: Outlining the Foundations for Action." J Epidemiol Community Health 58, no. 8 (Aug 2004): 655-8.
Olmstead, J. A., and M. D. Dahnke. "The Need for an Effective Process to Resolve Conflicts over Medical Futility: A Case Study and Analysis." Crit Care Nurse 36, no. 6 (Dec 2016): 13-23.
319
Olson, Maren E, Douglas Diekema, Barbara A Elliott, and Colleen M Renier. "Impact of Income and Income Inequality on Infant Health Outcomes in the United States." Pediatrics 126, no. 6 (2010): 1165-73.
Olthuis, Gert, Carlo Leget, and Mieke Grypdonck. "Why Shared Decision Making Is Not Good Enough: Lessons from Patients." Journal of Medical Ethics 40, no. 7 (Jul 2014): 493.
Oshima Lee, Emily M. A., and Ezekiel J. M. D. PhD Emanuel. "Shared Decision Making to Improve Care and Reduce Costs." The New England Journal of Medicine 368, no. 1 (2013 Jan 03): 6-8.
Osuji, Onyeka K., and Ugochukwu L. Obibuaku. "Rights and Corporate Social Responsibility: Competing or Complementary Approaches to Poverty Reduction and Socioeconomic Rights?" Journal of Business Ethics 136, no. 2 (Jun 2016): 329-47.
Otani, Koichiro, Brian Waterman, Kelly M. Faulkner, Sarah Boslaugh, W. Claiborne Dunagan, and Sue PhD Ehinger. "How Patient Reactions to Hospital Care Attributes Affect the Evaluation of Overall Quality of Care, Willingness to Recommend, and Willingness to Return/Practitioner Application." Journal of Healthcare Management 55, no. 1 (Jan/Feb 2010): 25-37; discussion 38.
Ottersen, T. "Lifetime Qaly Prioritarianism in Priority Setting." J Med Ethics 39, no. 3 (Mar 2013): 175-80.
Ottersen, T., O. Maestad, and O. F. Norheim. "Lifetime Qaly Prioritarianism in Priority Setting: Quantification of the Inherent Trade-Off." Cost Eff Resour Alloc 12, no. 1 (Jan 14 2014): 2.
Owen-Smith, A., J. Donovan, and J. Coast. "How Clinical Rationing Works in Practice: A Case Study of Morbid Obesity Surgery." Soc Sci Med 147 (Dec 2015): 288-95.
Ozar, David T. "Profession and Professional Ethics." In Encyclopedia of Bioethics, edited by Stephen G. Post, 2158-69. New York: Macmillan Reference USA, 2004.
Özden, Dilek, Serife Karagözolu, and Gülay Yildirim. "Intensive Care Nurses' Perception of Futility: Job Satisfaction and Burnout Dimensions." Nursing Ethics 20, no. 4 (Jun 2013): 436-47.
Padgett, Jared, Kenneth Gossett, Roger Mayer, Wen-Wen Chien, and Freda Turner. "Improving Patient Safety through High Reliability Organizations." The Qualitative Report 22, no. 2 (Feb 2017): 410-25.
Parast, Layla, Brian Doyle, Cheryl L. Damberg, Kanaka Shetty, David A. Ganz, Neil S. Wenger, and Paul G. Shekelle. "Challenges in Assessing the Process-Outcome Link in Practice." Journal of General Internal Medicine 30, no. 3
Park, Seri, and Tamara M. Kear. "Current State-of-Practice: Transportation for Patients with End Stage Renal Disease." Nephrology Nursing Journal 44, no. 4 (Jul/Aug 2017): 309-15.
320
Partain, D. K., C. Ingram, and J. J. Strand. "Providing Appropriate End-of-Life Care to Religious and Ethnic Minorities." Mayo Clin Proc 92, no. 1 (Jan 2017): 147-52.
Pavlish, Carol Faan, Katherine Brown-Saltzman, Loretta Cgrn So, Amy Heers, and Nicole Iorillo. "Avenues of Action in Ethically Complex Situations: A Critical Incident Study." Journal of Nursing Administration 45, no. 6 (Jun 2015): 311.
Payne, G. H., S. D. James, Jr., L. Hawley, B. Corrigan, R. E. Kramer, S. N. Overton, R. P. Farris, and Y. Wasilewski. "Cdc's Health Equity Resource Toolkit: Disseminating Guidance for State Practitioners to Address Obesity Disparities." Health Promot Pract 16, no. 1 (Jan 2015): 84-90.
Peacock, S. J. "Public Attitudes and Values in Priority Setting." Isr J Health Policy Res 4 (2015): 29.
Pearson, SD et al. No Margin, No Mission. Health Care Organizations and the Quest for Ethical Excellence. Oxford University Press, 2003.
Peek, Monica E., Shannon C. Wilson, Rita Gorawara-bhat, Angela Odoms-young, Michael T. Quinn, and Marshall H. Chin. "Barriers and Facilitators to Shared Decision-Making among African-Americans with Diabetes." Journal of General Internal Medicine 24, no. 10 (Oct 2009): 1135-9.
Pega, Frank, Nicole B. Valentine, Kumanan Rasanathan, Ahmad Reza Hosseinpoor, Tone P. Torgersen, Veerabhadran Ramanathan, Tipicha Posayanonda, et al. "The Need to Monitor Actions on the Social Determinants of Health." World Health Organization. Bulletin of the World Health Organization 95, no. 11 (Nov 2017): 784-87.
Peppercorn, Jeffrey, S. Yousuf Zafar, Kevin Houck, Peter Ubel, and Neal J. Meropol. "Does Comparative Effectiveness Research Promote Rationing of Cancer Care?" Lancet Oncology 15, no. 3 (Mar 2014): e132-8.
Periyakoil, Vyjeyanthi S., Eric Neri, and Helena Kraemer. "No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End-of-Life Conversations with Diverse Patients." PLoS One 10, no. 4 (Apr 2015).
Perkins, Henry S. "Culture as a Useful Conceptual Tool in Clinical Ethics Consultation." Cambridge Quarterly of Healthcare Ethics 17, no. 2 (Apr 2008): 164-72.
Peroni, Lourdes, and Alexandra Timmer. "Vulnerable Groups: The Promise of an Emerging Concept in European Human Rights Convention Law." International Journal of Constitutional Law 11, no. 4 (October 2013): 1056-85.
Phibbs, Sandi Cleveland, Jennifer Faith, and Sheryl Thorburn. "Patient-Centred Communication and Provider Avoidance: Does Body Mass Index Modify the Relationship?" The Health Education Journal 76, no. 1 (Feb 2017): 120-27.
321
Pinto, Andrew D. and Upshur, Ross E.G. (eds.): An introduction to global health ethics. Routledge, London and New York, 2013. 48-49.
Post, SG. "Clinical Ethics." Encyclopedia of Bioethics. New York: Macmillan Reference USA, 2004.
Potvin, Louise. "Promoting Health and Equity: A Theme That Is More Relevant Than Ever." Global Health Promotion 22, no. 1 (2015): 3-5.
Powers, Madison. "Social Justice." In Bioethics, edited by Bruce Jennings, 2966-73. Farmington Hills, MI: Macmillan Reference USA, 2014. 2966 -2970
Pratesi, A., F. Orso, C. Ghiara, A. Lo Forte, A. C. Baroncini, M. L. Di Meo, E. Carassi, and S. Baldasseroni. "Cardiac Surgery in the Elderly: What Goals of Care?" Monaldi Arch Chest Dis 87, no. 2 (Jul 18 2017): 852.
Price, Bob. "Discussing Risk with Patients." Nursing Standard (2014+) 31, no. 33 (2017): 53.
Pritchard-Jones, L. "Ageism and Autonomy in Health Care: Explorations through a Relational Lens." Health Care Anal 25, no. 1 (Mar 2017): 72-89.
Pronovost, Peter J., and Jill A. Marsteller. "Creating a Fractal-Based Quality Management Infrastructure." Journal of Health Organization and Management 28, no. 4 (2014): 576-86.
Pronovost, Peter J., Thomas Nolan, Scott Zeger, Marlene Miller, and Haya Rubin. "How Can Clinicians Measure Safety and Quality in Acute Care?" The Lancet 363, no. 9414 (2004): 1061-7.
Puras, Dainius. "Human Rights and the Practice of Medicine." (2017): Public Health Reviews 38.
Purtilo, Ruth B. "Professional–Patient Relationship: Iii. Ethical Issues." In Encyclopedia of Bioethics, edited by Stephen G. Post, 2150-58. New York: Macmillan Reference USA, 2004.
Qato, Dima Mazen, Shannon Zenk, Jocelyn Wilder, Rachel Harrington, Darrell Gaskin, and G. Caleb Alexander. "The Availability of Pharmacies in the United States: 2007-2015." PLoS One 12, no. 8 (Aug 2017).
Ram-tiktin, Efrat. "The Right to Health Care as a Right to Basic Human Functional Capabilities." Ethical Theory and Moral Practice 15, no. 3 (Jun 2012): 337-51.
Ratcliffe, J., E. Lancsar, R. Walker, and Y. Gu. "Understanding What Matters: An Exploratory Study to Investigate the Views of the General Public for Priority Setting Criteria in Health Care." Health Policy 121, no. 6 (Jun 2017): 653-62.
322
Reed, Peter, Douglas A. Conrad, Susan E. Hernandez, Carolyn Watts, and Miriam Marcus-Smith. "Innovation in Patient-Centered Care: Lessons from a Qualitative Study of Innovative Health Care Organizations in Washington State." BMC Family Practice 13 (2012): 120.
Reese, P. P., A. L. Caplan, R. D. Bloom, P. L. Abt, and J. H. Karlawish. "How Should We Use Age to Ration Health Care? Lessons from the Case of Kidney Transplantation." J Am Geriatr Soc 58, no. 10 (Oct 2010): 1980-6.
Repenshek, Mark. "Moral Distress: Inability to Act or Discomfort with Moral Subjectivity?" Nursing Ethics 16, no. 6 (Nov 2009): 734-42.
Rhodes, Rosamond. "The Professional Responsibilities of Medicine." In The Blackwell Guide to Medical Ethics, 71-87: Blackwell Publishing Ltd, 2008.
Rid, A. "Justice and Procedure: How Does "Accountability for Reasonableness" Result in Fair Limit-Setting Decisions?" Journal of Medical Ethics 35, no. 1 (Jan 2009): 12.
Rising, M. L. "Truth Telling as an Element of Culturally Competent Care at End of Life." J Transcult Nurs 28, no. 1 (Jan 2017): 48-55.
Robert Wachter. Understanding Patient Safety. McGraw Hill, 2007. 3-12
Robertson-Preidler, Joelle, Nikola Biller-Andorno, and Tricia J. Johnson. "What Is Appropriate Care? An Integrative Review of Emerging Themes in the Literature." BMC Health Services Research 17 (2017).
Rodwin, Marc A. Conflicts of Interest and the Future of Medicine. Oxford University Press. 2011. 8-11
Roessler, Richard T., Malachy Bishop, Phillip D. Rumrill, Kathleen Sheppard-Jones, Brittany Waletich, Veronica Umeasiegbu, and Lisa Bishop. "Specialized Housing and Transportation Needs of Adults with Multiple Sclerosis." Work 45, no. 2 (2013): 223-35.
Rogers, W. A. "Evidence Based Medicine and Justice: A Framework for Looking at the Impact of Ebm Upon Vulnerable or Disadvantaged Groups." J Med Ethics 30, no. 2 (Apr 2004): 141-5.
Rogers, W., C. Degeling, and C. Townley. "Equity under the Knife: Justice and Evidence in Surgery." Bioethics 28, no. 3 (Mar 2014): 119-26.
Rogers, Wendy A., Catriona Mackenzie, and Susan Dodds. "Vulnerability." In Bioethics, edited by Bruce Jennings, 3149-53. Farmington Hills, MI: Macmillan Reference USA, 2014.
Rogowski, Wolf H., Scott D. Grosse, Jörg Schmidtke, and Georg Marckmann. "Criteria for Fairly Allocating Scarce Health-Care Resources to Genetic Tests: Which Matter Most?" European Journal of Human Genetics : EJHG 22, no. 1 (Jan 2014): 25-31.
323
Romain, Frederic, and Andrew Courtwright. "Can I Trust Them to Do Everything? The Role of Distrust in Ethics Committee Consultations for Conflict over Life-Sustaining Treatment among Afro-Caribbean Patients." Journal of Medical Ethics: The Journal of the Institute of Medical Ethics 42, no. 9 (2018-01-13 2016): 582-85.
Romo, R. D., T. A. Allison, A. K. Smith, and M. I. Wallhagen. "Sense of Control in End-of-Life Decision-Making." J Am Geriatr Soc 65, no. 3 (Mar 2017): e70-e75.
Rosenberg, L. B., and D. Doolittle. "Learn and Live?: Understanding the Cultural Focus on Nonbeneficial Cardiopulmonary Resuscitation (Cpr) as a Response to Existential Distress About Death and Dying." Am J Bioeth 17, no. 2 (Feb 2017): 54-55.
Rosoff, Philip M. "Institutional Futility Policies Are Inherently Unfair." HEC Forum 25, no. 3 (Sep 2013): 191-209.
Rothman DJ and Rothman Sheila M. Trust is not enough. Bringing human rights to medicine. New York Review of Books, New York, 2006. 152-153
Rubin, Susan B. "If We Think It's Futile, Can't We Just Say No?" HEC Forum 19, no. 1 (Mar 2007): 45-65.
Rumbold, B., A. Weale, A. Rid, J. Wilson, and P. Littlejohns. "Public Reasoning and Health-Care Priority Setting: The Case of Nice." Kennedy Inst Ethics J 27, no. 1 (2017): 107-34.
Rumbold, B., R. Baker, O. Ferraz, S. Hawkes, C. Krubiner, P. Littlejohns, O. F. Norheim, et al. "Universal Health Coverage, Priority Setting, and the Human Right to Health." Lancet 390, no. 10095 (Aug 12 2017): 712-14.
Ruof, Mary C. "Vulnerability, Vulnerable Populations, and Policy." Kennedy Institute of Ethics Journal 14, no. 4 (2004): 411-25.
Russell, Roberta S., Dana M. Johnson, and Sheneeta W. White. "Patient Perceptions of Quality: Analyzing Patient Satisfaction Surveys." International Journal of Operations & Production Management 35, no. 8 (2015): 1158-81.
Russo, Fabrizio. "What Is the Csr's Focus in Healthcare?" Journal of Business Ethics 134, no. 2 (Mar 2016): 323-34.
Rust, G., R. S. Levine, Y. Fry-Johnson, P. Baltrus, J. Ye, and D. Mack. "Paths to Success: Optimal and Equitable Health Outcomes for All." J Health Care Poor Underserved 23, no. 2 Suppl (May 2012): 7-19.
Rust, G., S. Zhang, K. Malhotra, L. Reese, L. McRoy, P. Baltrus, L. Caplan, and R. S. Levine. "Paths to Health Equity: Local Area Variation in Progress toward Eliminating Breast Cancer Mortality Disparities, 1990-2009." Cancer 121, no. 16 (Aug 15 2015): 2765-74.
Rutman, Shira, Leslie Phillips, and Aren Sparck. "Health Care Access and Use by Urban American Indians and Alaska Natives: Findings from the National Health Interview
324
Survey (2006-09)." Journal of Health Care for the Poor and Underserved 27, no. 3 (Aug 2016): 1521-36.
Rutstein, S. E., J. T. Price, N. E. Rosenberg, S. M. Rennie, A. K. Biddle, and W. C. Miller. "Hidden Costs: The Ethics of Cost-Effectiveness Analyses for Health Interventions in Resource-Limited Settings." Glob Public Health 12, no. 10 (Oct 2017): 1269-81.
Sagrestano, Lynda M., Joy Clay, Ruthbeth Finerman, Jennifer Gooch, and Melanie Rapino. "Transportation Vulnerability as a Barrier to Service Utilization for Hiv-Positive Individuals." AIDS Care 26, no. 3 (2014): 314-19 6p.
Saha, S., M. C. Beach, and L. A. Cooper. "Patient Centeredness, Cultural Competence and Healthcare Quality." J Natl Med Assoc 100, no. 11 (2008): 1275-85.
Salloch, Sabine. "Same Same but Different: Why We Should Care About the Distinction between Professionalism and Ethics." BMC Medical Ethics 17 (2016).
Sargent-Cox, K. "Ageism: We Are Our Own Worst Enemy." Int Psychogeriatr 29, no. 1 (Jan 2017): 1-8.
Saric, L., I. Prkic, and M. Jukic. "Futile Treatment-a Review." J Bioeth Inq 14, no. 3 (Sep 2017): 329-37.
Satyamurthy, Shruthi, and Daniel Montanera. "Racial Concentration as a Determinant of Access to Health Care in Georgia." International Journal of Child Health and Human Development 9, no. 4 (2016): 3-14.
Saver, Barry G., Stephen A. Martin, Ronald N. Adler, Lucy M. Candib, Konstantinos E. Deligiannidis, Jeremy Golding, Daniel J. Mullin, Michele Roberts, and Stefan Topolski. "Care That Matters: Quality Measurement and Health Care."
Schenker, Yael, Frances Wang, Sarah Jane Selig, Rita Ng, and Alicia Fernandez. "The Impact of Language Barriers on Documentation of Informed Consent at a Hospital with on-Site Interpreter Services." Journal of General Internal Medicine 22 (Nov 2007): 294-9.
Scheunemann, Leslie P., Robert M. Arnold, and Douglas B. White. "The Facilitated Values History: Helping Surrogates Make Authentic Decisions for Incapacitated Patients with Advanced Illness." American Journal of Respiratory and Critical Care Medicine 186, no. 6 (2012): 480-6.
Schneiderman, L. J. "Defining Medical Futility and Improving Medical Care." J Bioeth Inq 8, no. 2 (Jun 2011): 123-31.
Schoenfeld, E. M., S. L. Goff, T. R. Elia, E. R. Khordipour, K. E. Poronsky, K. A. Nault, P. K. Lindenauer, and K. M. Mazor. "The Physician-as-Stakeholder: An Exploratory Qualitative Analysis of Physicians' Motivations for Using Shared Decision Making in the Emergency Department." Acad Emerg Med 23, no. 12 (Dec 2016): 1417-27.
325
Schollgen, Ina, Oliver Huxhold, Benjamin Schuz, and Clemens Tesch-Romer. "Resources for Health: Differential Effects of Optimistic Self-Beliefs and Social Support According to Socioeconomic Status." Health Psychology. (2011): 326-35 10p.
Schoo, Adrian, Sharon Lawn, and Dean Carson. "Towards Equity and Sustainability of Rural and Remote Health Services Access: Supporting Social Capital and Integrated Organisational and Professional Development." BMC Health Services Research 16 (2016).
Schroeder, D., and E. Gefenas. "Vulnerability: Too Vague and Too Broad?" Camb Q Healthc Ethics 18, no. 2 (Apr 2009): 113-21.
Schulz, Valerie Marie , Allison M. Crombeen, Denise Marshall, Joshua Shadd, Kori A. LaDonna, and Lorelei Lingard. "Beyond Simple Planning: Existential Dimensions of Conversations with Patients at Risk of Dying from Heart Failure." Journal of Pain and Symptom Management 54, no. 5 (Nov 2017): 637.
Schwartz, Peter H. "Comparative Risk: Good or Bad Heuristic?" American Journal of Bioethics 16, no. 5 (2016): 20-22.
Schwarzkopf, D., H. Ruddel, D. O. Thomas-Ruddel, J. Felfe, B. Poidinger, C. T. Matthaus-Kramer, C. S. Hartog, and F. Bloos. "Perceived Nonbeneficial Treatment of Patients, Burnout, and Intention to Leave the Job among Icu Nurses and Junior and Senior Physicians." Crit Care Med 45, no. 3 (Mar 2017): e265-e73.
Schweda, M., S. Schicktanz, A. Raz, and A. Silvers. "Beyond Cultural Stereotyping: Views on End-of-Life Decision Making among Religious and Secular Persons in the USA, Germany, and Israel." BMC Med Ethics 18, no. 1 (Feb 17 2017): 13.
Seal, Robert P., Jeremy Kynaston, Glyn Elwyn, and Philip E. M. Smith. "Using an Option Grid in Shared Decision Making." Practical Neurology 14, no. 1 (Feb 2014): 54.
Sedhom, R., and D. Barile. "Discussing Goals of Care with Families Using the Four Steps." Gerontol Geriatr Med 2 (Jan-Dec 2016): 2333721416664446.
Sellman, Derek. "Towards an Understanding of Nursing as a Response to Human Vulnerability." Nursing Philosophy: An International Journal for Healthcare Professionals 6, no. 1 (2017-03-21 2005): 2-10.
Semplici, Stefano. "The Importance of ‘Social Responsibility’ in the Promotion of Health." Medicine, Health Care and Philosophy 14, no. 4 (2011): 355-63.
Severin, F., W. Hess, J. Schmidtke, A. Muhlbacher, and W. Rogowski. "Value Judgments for Priority Setting Criteria in Genetic Testing: A Discrete Choice Experiment." Health Policy 119, no. 2 (Feb 2015): 164-73.
Shadmi, Efrat. "Multimorbidity and Equity in Health." International Journal for Equity in Health 12 (2013): 59.
326
Shankel, Erin Christine, and Linda Wofford. "Symptom Management Theory as a Clinical Practice Model for Symptom Telemonitoring in Chronic Disease." Journal of Theory Construction & Testing 20, no. 1 (Spring/Summer 2016): 31-38.
Shaw, B. A., K. McGeever, E. Vasquez, N. Agahi, and S. Fors. "Socioeconomic Inequalities in Health after Age 50: Are Health Risk Behaviors to Blame Soc Sci Med 101 (Jan 2014): 52-60.
Sheeler, R. D., T. Mundell, S. A. Hurst, S. D. Goold, B. Thorsteinsdottir, J. C. Tilburt, and M. Danis. "Self-Reported Rationing Behavior among Us Physicians: A National Survey." J Gen Intern Med 31, no. 12 (Dec 2016): 1444-51.
Shemberg, Andrea. "New Global Standards for Business and Human Rights." Business Law International 13, no. 1 (Jan 2012): 27-33,1.
Shi, Leiyu, Lydie A. Lebrun-Harris, Charles Daly, Ravi Sharma, Alek Sripipatana, A. Seiji Hayashi, and Quyen Ngo-Metzger. "Reducing Disparities”
Shi, Leiyu, and Gregory D. Stevens. "Vulnerability and Unmet Health Care Needs." Journal of General Internal Medicine 20, no. 2 (Feb 2005): 148-54.
Shi, Leiyu, and Gregory D. Stevens. Vulnerable Populations in the United States. Second ed. San Francisco, CA: Jossey-Bass, 2010. 152-163
Shin, Dong Wook, Juhee Cho, Debra L. Roter, So Young Kim, Hyung Kook Yang, Keeho Park, Hyung Jin Kim, et al. "Attitudes toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists." Psycho - Oncology 26, no. 6 (Jun 2017): 770-78.
Shojania KG, Showstack J, Wachter RM. “Assessing Hospital Quality: A Review for Clinicians.” Eff Clin Pract 2001. 4:82-90.
Shore, David A., ed. The Trust Crisis in Healthcare: Causes, Consequences, and Cures. New York: Oxford University Press, 2006. Oxford Scholarship Online, 2009.
Shuman, Andrew G., Mary S. McCabe, Joseph J. Fins, and Paul T. Menzel. "It's Who You Know." The Hastings Center Report 42, no. 2 (Mar/Apr 2012): 12-13,48.
Sibbald, Shannon L., Jennifer L. Gibson, Peter A. Singer, Ross Upshur, and Douglas K. Martin. "Evaluating Resource allocation Success in Healthcare: A Pilot Study." BMC Health Services Research 10 (2010): 131.
Simon, J. R., C. Kraus, M. Rosenberg, D. H. Wang, E. P. Clayborne, and A. R. Derse. ""Futile Care"-an Emergency Medicine Approach: Ethical and Legal Considerations." Ann Emerg Med 70, no. 5 (Nov 2017): 707-13.
Sinha, Shashank S., and Michael W. Cullen. "Mentorship, Leadership, and Teamwork." Journal of the American College of Cardiology 66, no. 9 (2015): 1079-82.
327
Smedley, Brian D., Adrienne Y. Stith, and Alan R. Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington: The National Academies Press, 2002.
Smith, Lauren B., and Andrew Barnosky. "Web-Based Clinical Ethics Consultation: A Model for Hospital-Based Practice." Physician Executive 37, no. 6 (Nov/Dec 2011): 62-4.
Smith, Martin L., and Catherine L. Luck. "Desperately Seeking a Surrogate-for a Patient Lacking Decision-Making Capacity." Narrative Inquiry in Bioethics 4, no. 2 (Summer 2014): 161-69.
Smith, N., C. Mitton, W. Hall, S. Bryan, C. Donaldson, S. Peacock, J. L. Gibson, and B. Urquhart. "High Performance in Healthcare Priority Setting and Resource Allocation: A Literature- and Case Study-Based Framework in the Canadian Context." Soc Sci Med 162 (Aug 2016): 185-92.
Smith, Quentin W., Richard L. Street, Robert J. Volk, and Michael Fordis. "Differing Levels of Clinical Evidence: Exploring Communication Challenges in Shared Decision Making." Medical Care Research and Review 70, no. 1 suppl (February 2013): 3S-13S.
Smith, W. R., J. R. Betancourt, M. K. Wynia, J. Bussey-Jones, V. E. Stone, C. O. Phillips, A. Fernandez, E. Jacobs, and J. Bowles. "Recommendations for Teaching About Racial and Ethnic Disparities in Health and Health Care." Ann Intern Med 147, no. 9 (2007): 654-65.
Smith-Estelle, Allison, Laura Ferguson, and Sofia Gruskin. "Applying Human Rights-Based Approaches to Public Health: Lessons Learned from Maternal, Newborn and Child Health Programs." Etude de la Population Africaine 29, no. 1 (201
Soares, C. "Corporate Versus Individual Moral Responsibility." Journal of Business Ethics 46, no. 2 (Aug 2003): 43-50.
Solbakk, Jan Helge. "Vulnerability: A Futile or Useful Principle in Healthcare Ethics?" London: SAGE Publications Ltd, 2011..
Solovieva, Tatiana I., and Richard T. Walls. "Barriers to Traumatic Brain Injury Services and Supports in Rural Setting." Journal of Rehabilitation 80, no. 4 (2014): 10-18 9p.
Souba, W. W. "The 3 Essential Responsibilities: A Leadership Story." Arch Surg 145, no. 6 (Jun 2010): 540-3.
Spencer, EM et al. Organization Ethics in Health Care. Oxford University Press, 2000.
Sreenivasan, G. "Health Care and Human Rights: Against the Split Duty Gambit." Theor Med Bioeth 37, no. 4 (Aug 2016): 343-64.
Stacey, Gemma, Anne Felton, Ada Hui, Theo Stickley, Philip Houghton, Bob Diamond, Alastair Morgan, James Shutt, and Martin Willis. "Informed, Involved and Influential: Three Is of Shared Decision Making." Mental Health Practice (2014+) 19, no. 4 (Dec 2015): 31.
328
Stafinski, Tania, Devidas Menon, Christopher McCabe, and Donald J. Philippon. "To Fund or Not to Fund.” PharmacoEconomics 29, no. 9 (Sep 2011): 771-80.
Stelfox, Henry T., and Sharon E. Straus. "Measuring Quality of Care: Considering Measurement Frameworks and Needs Assessment to Guide Quality Indicator Development." Journal of Clinical Epidemiology 66, no. 12 (Dec 2013): 1320-7.
Stone, John R. "Commentary: Ethics and Medical Judgment: Whose Values? What Process?" Cambridge Quarterly of Healthcare Ethics 22, no. 4 (Oct 2013): 404-6.
Stone, John R. "Race and Healthcare Disparities: Overcoming Vulnerability." Theoretical Medicine and Bioethics: Philosophy of Medical Research and Practice 23, no. 6 (2017-03-21 2002): 499-518.
Stone, John R. "Saving and Ignoring Lives: Physicians' Obligations to Address Root Social Influences on Health--Moral Justifications and Educational Implications." Cambridge Quarterly of Healthcare Ethics 19, no. 4 (Oct 2010): 497-
Strech, D., and M. Danis. "How Can Bedside Rationing Be Justified Despite Coexisting Inefficiency? The Need for 'Benchmarks of Efficiency'." J Med Ethics 40, no. 2 (Feb 2014): 89-93.
Strech, Daniel M. D. PhD, Samia M. D. Hurst, and Marion M. D. Danis. "The Role of Ethics Committees and Ethics Consultation in Allocation Decisions: A 4-Stage Process." Medical Care 48, no. 9 (Sep 2010
Su, C. T., R. D. McMahan, B. A. Williams, R. K. Sharma, and R. L. Sudore. "Family Matters: Effects of Birth Order, Culture, and Family Dynamics on Surrogate Decision-Making." J Am Geriatr Soc 62, no. 1 (Jan 2014): 175-82.
Suchy, Kirsten. "A Lack of Standardization: The Basis for the Ethical Issues Surrounding Quality and Performance Reports." Journal of Healthcare Management 55, no. 4 (Jul/Aug 2010): 241-51.
Sue, Derald Wing. "Multidimensional Facets of Cultural Competence." The Counseling Psychologist 29, no. 6 (2001): 790-821.
Sulmasy, Daniel P. "Speaking of the Value of Life." Kennedy Institute of Ethics Journal 21, no. 2 (Jun 2011): 181-99.
Sutter, Robert, Brian Waterman, and Michael Udwin. "An Analytical Approach to Improving Physician Performance." Physician Executive 39, no. 3 (May/Jun 2013): 26-36.
Swinton, M., M. Giacomini, F. Toledo, T. Rose, T. Hand-Breckenridge, A. Boyle, A. Woods, et al. "Experiences and Expressions of Spirituality at the End of Life in the Intensive Care Unit." Am J Respir Crit Care Med 195, no. 2 (Jan 15 2017): 198-204.
329
Tamirisa, N. P., J. S. Goodwin, A. Kandalam, S. K. Linder, S. Weller, S. Turrubiate, C. Silva, and T. S. Riall. "Patient and Physician Views of Shared Decision Making in Cancer." Health Expect 20, no. 6 (Dec 2017): 1248-53.
Tao, Wenjing, Janne Agerholm, and Bo Burstrom. "The Impact of Reimbursement Systems on Equity in Access and Quality of Primary Care: A Systematic Literature Review." BMC Health Services Research 16 (2016).
Tao, Yi, Kizito Henry, Qinpei Zou, and Xiaoni Zhong. "Methods for Measuring Horizontal Equity in Health Resource Allocation: A Comparative Study." Health Economics Review 4, no. 1 (Aug 2014): 1-10.
Tapper, E. B. "Consults for Conflict: The History of Ethics Consultation." Proc (Bayl Univ Med Cent) 26, no. 4 (Oct 2013): 417-22.
Tavaglione, N., A. K. Martin, N. Mezger, S. Durieux-Paillard, A. Francois, Y. Jackson, and S. A. Hurst. "Fleshing out Vulnerability." Bioethics 29, no. 2 (2015): 98-107.
Tavaglione, Nicolas, Angela K. Martin, and Nathalie Mezger. "Fleshing out Vulnerability." Bioethics 29, no. 2 (2017-03-21 2015): 98-107.
Ter Meulen, R. "Solidarity, Justice, and Recognition of the Other." Theor Med Bioeth 37, no. 6 (Dec 2016): 517-29.
Ter Meulen, Ruud. "Solidarity and Justice in Health Care: A Critical Analysis of Their Relationship." Diametros: An Online Journal of Philosophy 43 (2018-01-13 2015): 1-20.
Tervalon, Melanie, and Jann Murray-Garcia. "Cultural Humility Versus Cultural Competence: A Critical Distinction in Defining Physician Training Outcomes in Multicultural Education." J Health Care Poor Underserved 9, no. 2 (1998):117-25.
Teunis, Teun, Stein Janssen, Thierry G. Guitton, David Ring, and Robert Parisien. "Do Orthopaedic Surgeons Acknowledge Uncertainty?" Clinical Orthopaedics and Related Research 474, no. 6 (Jun 2016): 1360-69.
Teunissen, G. J., M. A. Visse, and T. A. Abma. "Struggling between Strength and Vulnerability, a Patients' Counter Story." Health Care Analysis 23, no. 3 (2017-03-21 2015): 288-305.
Teutsch, Steven, and Bernd Rechel. "Ethics of Resource Allocation and Rationing Medical Care in a Time of Fiscal Restraint - Us and Europe." Public Health Reviews 34, no. 1 (2012): 1-10.
The Joint Commission. “2018 National Patient Safety Goals.” Retrieved 1/13/2018. https://www.jointcommission.org/standards_information/npsgs.aspx
The Joint Commission. “Facts about the National Patient Safety Goals.” Retrieved 1/13/2018. https://www.jointcommission.org/facts_about_the_national_patient_safety_goals/
330
The United Nations. Universal Declaration of Human Rights. 1948.
Thompson, P. "Seeking Common Ground in a World of Ethical Pluralism: A Review Essay of Moral Acquaintances: Methodology in Bioethics by Kevin Wm. Wildes, S.J." HEC Forum 16, no. 2 (2004): 120-128.
Thompson, Richard. "Self-Serving Altruism: Not an Oxymoron." Physician Executive 33, no. 6 (Nov/Dec 2007): 82-3.
Tomlinson, Thomas. "Futility Beyond Cpr: The Case of Dialysis." HEC Forum 19, no. 1 (Mar 2007): 33-43.
Tonelli, Mark R. "What Medical Futility Means to Clinicians." HEC Forum 19, no. 1 (Mar 2007): 83-93.
Torke, A. M., G. A. Sachs, P. R. Helft, K. Montz, S. L. Hui, J. E. Slaven, and C. M. Callahan. "Scope and Outcomes of Surrogate Decision Making among Hospitalized Older Adults." JAMA Intern Med 174, no. 3 (Mar 2014): 370-7.
Tromp, Noor, and Rob Baltussen. "Mapping of Multiple Criteria for Priority Setting of Health Interventions: An Aid for Decision Makers." BMC Health Services Research 12 (2012): 454.
Trong Tuan, Luu. "Clinical Governance, Corporate Social Responsibility, Health Service Quality, and Brand Equity." Clinical Governance 19, no. 3 (2014): 215-234.
Truog, Robert D.. "Is It Always Wrong to Perform Futile Cpr?" The New England Journal of Medicine 362, no. 6 (Feb 2010): 477-9.
Truog, Robert D.. "Tackling Medical Futility in Texas." The New England Journal of Medicine 357, no. 1 (Jul 2007): 1-3.
Tubbs, James B., Jr. A Handbook of Bioethics Terms. Washington, UNITED STATES: Georgetown University Press, 2009.
Turner, Bryan. "The Rights of Age: On Human Vulnerability." In Sociology and Human Rights: A Bill of Rights for the Twenty-First Century Thousand Oaks, California: SAGE Publications, Inc., 2012
Turner, L. "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings." Health Care Anal 11, no. 2 (2003): 103-104.
Turner, L. "From the Local to the Global: Bioethics and the Concept of Culture." J Med Philos 30, no. 3. (2005.)
U.S. Census Bureau. “U.S. Census Bureau Projections Show a Slower Growing, Older, More Diverse Nation a Half Century from Now.” (2012.) www.census.gov/newsroom/releases/archives/population/cb12-243.html.
331
U.S. Department of Health and Human Services. Think Cultural Health. Retrieved January 13, 2018. https://www.thinkculturalhealth.hhs.gov
Ubel, Peter A. "Why It's Not Time for Health Care Rationing." Hastings Center Report 45, no. 2 (2018-01-13 2015): 15-19.
Ulrich, Connie M., Ann B. Hamric, and Christine Grady. "Moral Distress: A Growing Problem in the Health Professions?" The Hastings Center Report 40, no. 1 (Jan/Feb 2010): 20-2.
Umscheid, Craig A., Kendal Williams, and Patrick J. Brennan. "Hospital-Based Comparative Effectiveness Centers: Translating Research into Practice to Improve the Quality, Safety and Value of Patient Care." Journal of General Internal Medicine 25, no. 12 (Dec 2010): 1352-5.
UN Committee on Economic, Social and Cultural Rights (CESCR). “General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant).” (August 2000.)
UN General Assembly, Universal Declaration of Human Rights, 10 December 1948, 217 A (III)
UN General Assembly, International Covenant on Economic, Social and Cultural Rights. United Nations Treaty Series, vol. 993. 1966.
UN Human Rights Council, Protect, respect and remedy : a framework for business and human rights : report of the Special Representative of the Secretary-General on the Issue of Human Rights and Transnational Corporations and Other
UN Office of the High Commissioner for Human Rights (OHCHR), Fact Sheet No. 31, The Right to Health, June 2008, No. 31
UNESCO. “Universal Declaration on Bioethics and Human Rights.” (Oct 2015.)
United Nations Educational, Scientific, and Cultural Organization (UNESCO). Universal Declaration on Bioethics and Human Rights. 2005.
United Nations. “Goal 3: Ensure healthy lives and promote well-being for all at all ages.” (2015.) http://www.un.org/sustainabledevelopment/health/
United Nations. “Sustainable Development Goals.” (2015.) http://www.un.org/sustainabledevelopment/sustainable-development-goals/
United Nations. “Sustainable Development Goals: 17 Goals to Transform Our World.” (Sept 2015.) http://www.un.org/sustainabledevelopment/sustainable-development-goals/
United Nations. “Universal Declaration of Human Rights” (Dec 1948) http://www.un.org/en/universal-declaration-human-rights/
332
United States Department of Health and Human Services, Office of Minority Health. "National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care: A Blueprint for Advancing and Sustaining Clas Policy and Practice." Washington, 2013: 14-20.
US Department of Health and Human Services. Quality Improvement. April 2011. http://www.hrsa.gov/quality/toolbox/508pdfs/qualityimprovement.pdf
Vaismoradi, Mojtaba, Sue Jordan, and Mari Kangasniemi. "Patient Participation in Patient Safety and Nursing Input – a Systematic Review." Journal of Clinical Nursing 24, no. 5-6 (2015): 627-39.
Valtonen, Hannu. "Patient Characteristics and Fairness." The European Journal of Health Economics : HEPAC 10, no. 2 (May 2009): 179-86.
van de Wetering, E. J., N. J. van Exel, and W. B. Brouwer. "Health or Happiness? A Note on Trading Off Health and Happiness in Rationing Decisions." Value Health 19, no. 5 (Jul-Aug 2016): 552-7.
Van Den Bos, Jill, Karan Rustagi, Travis Gray, Michael Halford, Eva Ziemkiewicz, and Jonathan Shreve. "The $17.1 Billion Problem: The Annual Cost of Measurable Medical Errors." Health Affairs 30, no. 4 (2011): 596-603.
van der Weijden, Trudy, Antoine Boivin, Jako Burgers, Holger J. Schünemann, and Glyn Elwyn. "Clinical Practice Guidelines and Patient Decision Aids. An Inevitable Relationship." Journal of Clinical Epidemiology 65, no. 6 (Jun 2012): 584-9.
van Melle, Marije A., Dorien L. M. Zwart, Antoinette A. de Bont, Ineke W. M. Mol, Henk F. van Stel, and Niek J. de Wit. "Improving Transitional Patient Safety: Research Protocol of the Transitional Incident Prevention Programme." S
van Ryn, M., and J. Burke. "The Effect of Patient Race and Socio-Economic Status on Physicians' Perceptions of Patients." Soc Sci Med 50, no. 6 (2000): 813-28.
Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Washington D.C.: Georgetown University Press, 2012.
Vehmas, Simo, and T. O. M. Shakespeare. "Disability, Harm, and the Origins of Limited Opportunities." Cambridge Quarterly of Healthcare Ethics 23, no. 1 (Jan 2014): 41-7.
Venkatapuram, Sridhar, Hans-Jörg Ehni, and Abha Saxena. "Equity and Healthy Ageing." World Health Organization. Bulletin of the World Health Organization 95, no. 11 (Nov 2017): 791-92.
Veroff, David, Amy Marr, and David E. Wennberg. "Enhanced Support for Shared Decision Making Reduced Costs of Care for Patients with Preference-Sensitive Conditions." Health Affairs 32, no. 2 (Feb 2013): 285-93.
333
Visser, M., L. Deliens, and D. Houttekier. "Physician-Related Barriers to Communication and Patient- and Family-Centred Decision-Making Towards the End of Life in Intensive Care: A Systematic Review." Crit Care 18, no. 6 (Nov 18 2014): 604.
Voigt, Kristin. "Appeals to Individual Responsibility for Health." Cambridge Quarterly of Healthcare Ethics 22, no. 2 (Apr 2013): 146-58.
Vryonides, Stavros, Evridiki Papastavrou, Andreas Charalambous, Panayiota Andreou, and Anastasios Merkouris. "The Ethical Dimension of Nursing Care Rationing." Nursing Ethics 22, no. 8 (Dec 2015): 881-900.
"Vulnerability." In International Encyclopedia of the Social Sciences, edited by William A. Darity, Jr., 656-57. Detroit: Macmillan Reference USA, 2008.
Wagstaff, Adam. "Poverty and Health Sector Inequalities." World Health Organization. Bulletin of the World Health Organization 80, no. 2 (2002): 97-105.
Walczak, A., P. N. Butow, M. H. Tattersall, P. M. Davidson, J. Young, R. M. Epstein, D. S. Costa, and J. M. Clayton. "Encouraging Early Discussion of Life Expectancy and End-of-Life Care: A Randomised Controlled Trial of a Nurse-Led Communication Support Program for Patients and Caregivers." Int J Nurs Stud 67 (Feb 2017): 31-40.
Wallace, M., J. Crear-Perry, L. Richardson, M. Tarver, and K. Theall. "Separate and Unequal: Structural Racism and Infant Mortality in the Us." Health Place 45 (May 2017): 140-44.
Wallace, Steven P. "Equity and Social Determinants of Health among Older Adults." Generations 38, no. 4 (2014): 6-11.
Walley, P., & Gowland, B. "Completing the Circle: From Pd to Pdsa." International Journal of Health Care Quality Assurance 17(6) (2004): 349-58.
Washington, Donna L., Jacqueline Bowles, Somnath Saha, Carol R. Horowitz, Sandra MoodyAyers, Arleen F. Brown, Valerie E. Stone, Lisa A. Cooper, and Disparities in Health Task Force Writing group for the Society of General Internal Medicine. "Transforming Clinical Practice to Eliminate Racial–Ethnic Disparities in Healthcare." Journal of General Internal Medicine 23, no. 5 (2008): 685-91.
Watson, George W., R. Edward Freeman, and Bobby Parmar. "Connected Moral Agency in Organizational Ethics." Journal of Business Ethics 81, no. 2 (2008): 323-41.
Weaver, GR. "Virtue in Organizations: Moral Identity as a Foundation for Moral Agency." Organization Studies 27, no. 3 (2006): 341-68.
Wei, Alice C., David R. Urbach, Katharine S. Devitt, Meagan Wiebe, Oliver F. Bathe, Robin S. McLeod, Erin D. Kennedy, and Nancy N. Baxter. "Improving Quality through Process Change: A Scoping Review of Process Improvement Tools in”
334
Wei-Ching, Chang, and Joy H. Fraser. "Cooperate! A Paradigm Shift for Health Equity." International Journal for Equity in Health 16 (2017).
Weinick, R. M., and N. A. Krauss. "Racial/Ethnic Differences in Children's Access to Care." Am J Public Health 90, no. 11 (2000): 1771-4.
Weisleder, P. "Health Care Rationing in a Just Society: The Clinical Effectiveness Model." Semin Pediatr Neurol 22, no. 3 (Sep 2015): 201-4.
Weissman, J. S., J. Betancourt, E. G. Campbell, E. R. Park, M. Kim, B. Clarridge, D. Blumenthal, K. C. Lee, and A. W. Maina. "Resident Physicians' Preparedness to Provide Cross-Cultural Care." JAMA 294, no. 9 (2005):1058-67.
Welie, Jos V. "Social Contract Theory as a Foundation of the Social Responsibilities of Health Professionals." Medicine, Health Care, and Philosophy 15, no. 3 (2012): 347-55.
Weng, Suzie S. PhD M. S. W., and Warren T. I. I. I. M. S. W. Wolfe. "Asian American Health Inequities: An Exploration of Cultural and Language Incongruity and Discrimination in Accessing and Utilizing the Healthcare System." International Public Health Journal 8, no. 2 (2016): 155-67.
White, D. B., N. Ernecoff, P. Buddadhumaruk, S. Hong, L. Weissfeld, J. R. Curtis, J. M. Luce, and B. Lo. "Prevalence of and Factors Related to Discordance About Prognosis between Physicians and Surrogate Decision Makers of Critically Ill Patients." Jama 315, no. 19 (May 17 2016): 2086-94.
White, N., N. Kupeli, V. Vickerstaff, and P. Stone. "How Accurate Is the 'Surprise Question' at Identifying Patients at the End of Life? A Systematic Review and Meta-Analysis." BMC Med 15, no. 1 (Aug 2 2017): 139.
Whitley, Rob, Cecile Rousseau, Elizabeth Carpenter-Song, and Laurence J. M. D. Frcpc Kirmayer. "Evidence-Based Medicine: Opportunities and Challenges in a Diverse Society." Canadian Journal of Psychiatry 56, no. 9 (Sep 2011): 514-22.
Wilkinson, D. J. C. "Rationing Conscience." Journal of Medical Ethics: The Journal of the Institute of Medical Ethics 43, no. 4 (2018-01-13 2017): 226-29.
Wilkinson, D., and J. Savulescu. "Cost-Equivalence and Pluralism in Publicly-Funded Health-Care Systems." Health Care Anal (Jan 6 2017).
Wilkinson, G. W., A. Sager, S. Selig, R. Antonelli, S. Morton, G. Hirsch, C. R. Lee, et al. "No Equity, No Triple Aim: Strategic Proposals to Advance Health Equity in a Volatile Policy Environment." Am J Public Health 107, no. S3 (Dec 2017): S223-S28.
Willen, Sarah S., Michael Knipper, César E. Abadía-Barrero, and Nadav Davidovitch. "Syndemic Vulnerability and the Right to Health." The Lancet 389, no. 10072 (2017): 964-77.
335
Williams Jr, Ralph I et al. "Reinvigorating the Mission Statement through Top Management Commitment." Management Decision 52, no. 3 (2014): 446.
Williams, David R., Naomi Priest, and Norman B. Anderson. "Understanding Associations among Race, Socioeconomic Status, and Health: Patterns and Prospects." Health Psychology 35, no. 4 (2016): 407-11 5p.
Williams, David R., Naomi Priest, and Norman B. Anderson. "Understanding Associations among Race, Socioeconomic Status, and Health: Patterns and Prospects." Health Psychology 35, no. 4 (2016): 407-11 5p.
Williams, I. "Receptive Rationing: Reflections and Suggestions for Priority Setters in Health Care." J Health Organ Manag 29, no. 6 (2015): 701-10.
Wilmot, Stephen. "Corporate Moral Responsibility: What Can We Infer from Our Understanding of Organizations?" Journal of Business Ethics 30, no. 2 (Mar 2001): 161-69.
Wilson, M. E., A. Akhoundi, A. K. Krupa, R. F. Hinds, J. M. Litell, O. Gajic, and K. Kashani. "Development, Validation, and Results of a Survey to Measure Understanding of Cardiopulmonary Resuscitation Choices among Icu Patients and Their Surrogate Decision Makers." BMC Anesthesiol 14 (Mar 8 2014): 15.
Wilson, Sacoby, Hongmei Zhang, Chengsheng Jiang, Kristen Burwell, Rebecca Rehr, Rianna Murray, Laura Dalemarre, and Charles Naney. "Being Overburdened and Medically Underserved: Assessment of This Double Disparity for Populations in the State of Maryland." Environmental Health 13 (2014): 26.
Wilson-Mitchell, K., and M. Handa. "Infusing Diversity and Equity into Clinical Teaching: Training the Trainers." J Midwifery Womens Health 61, no. 6 (Nov 2016): 726-36.
Winkler, Eva C and Russell L. Gruen. Organizational Ethics. The Sage Handbook of Health Care Ethics: Core and Emerging Issues. Sage Publications Ltd. London: SAGE Publications Ltd, 2011. 75-76.
Wiseman, Virginia L. "Inclusiveness in the Value Base for Health Care Resource Allocation." Social Science & Medicine 108 (May 2014): 252-56.
Wittenberg, E., B. Ferrell, J. Goldsmith, H. Buller, and T. Neiman. "Nurse Communication About Goals of Care." J Adv Pract Oncol 7, no. 2 (Mar 2016): 146-54.
Woodard, Tanisha D. "Addressing Variation in Hospital Quality: Is Six Sigma the Answer?" Journal of Healthcare Management 50, no. 4 (Jul/Aug 2005): 226-36.
Woods, L. L., 2nd, M. Shaw-Ridley, and C. A. Woods. "Can Health Equity Coexist with Housing Inequalities? A Contemporary Issue in Historical Context." Health Promot Pract 15, no. 4 (Jul 2014): 476-82.
336
World Health Organization. “Health and Human Rights.” Factsheet No 323. (Dec 2015.) http://www.who.int/mediacentre/factsheets/fs323/en/
World Health Organization: Commission on Social Determinants of Health, 2005-2008. A conceptual framework for action on the social determinants of health. 2007.
Wouters, S., N. J. van Exel, K. I. Rohde, and W. B. Brouwer. "Are All Health Gains Equally Important? An Exploration of Acceptable Health as a Reference Point in Health Care Priority Setting." Health Qual Life Outcomes 13 (Jun 10 2015): 79.
Yamin, Alicia Ely, and Angela Duger. "Adjudicating Health-Related Rights: Proposed Considerations for the United Nations Committee on Economic, Social and Cultural Rights, and Other Supra-National Tribunals." Chicago Journal of International Law 17. (2016.)
Yamin, Alicia Ely, and Ole Frithjof Norheim. "Taking Equality Seriously: Applying Human Rights Frameworks to Resource allocation in Health." Human Rights Quarterly 36, no. 2 (May 2014): 296-324,504-05.
Yamin, Alicia Ely, and Paul Farmer. Power, Suffering, and the Struggle for Dignity : Human Rights Frameworks for Health and Why They Matter. Philadelphia: University of Pennsylvania Press, 2015. (26-41)
Yarnell, C., and R. Fowler. "The Case for Routine Goals-of-Care Documentation." BMJ Qual Saf 25, no. 9 (Sep 2016): 647-8.
Yegian, Jill Mathews, Pam Dardess, Maribeth Shannon, and Kristin L. Carman. "Engaged Patients Will Need Comparative Physician-Level Quality Data and Information About Their out-of-Pocket Costs." Health Affairs 32, no.
Yeow, Adrian, and Kim Huat Goh. "Work Harder or Work Smarter? Information Technology and Resource Allocation in Healthcare Processes." MIS Quarterly 39, no. 4 (Dec 2015): 763.
Yew Kong, Lee, Low Wah Yun, and Chirk Jenn Ng. "Exploring Patient Values in Medical Decision Making: A Qualitative Study." PLoS One 8, no. 11 (Nov 2013).
Yi Feng, Lai, Lum Andrew Yew Wai, Ho Emily Tse Lin, and Lim Yee Wei. "Patient-Provider Disconnect: A Qualitative Exploration of Understanding and Perceptions to Care Integration." PLoS One 12, no. 10 (Oct 2017).
Yuen, Jacqueline K., M. Carrington Reid, and Michael D. Fetters. "Hospital Do-Not-Resuscitate Orders: Why They Have Failed and How to Fix Them." Journal of General Internal Medicine 26, no. 7 (Jul 2011): 791-7.
Zagorac, Ivana PhD. "How Should We Treat the Vulnerable? Qualitative Study of Authoritative Ethics Documents." Journal of Health Care for the Poor and Underserved 27, no. 4 (Nov 2016): 1656-73.
337
Zhang, M., J. Volovetz, and M. Teo. "Surgeon Adherence to Medical Ethics as Contingent on Their Leadership in the Changing Economics of Health Care." World Neurosurg 104 (Aug 2017): 979-80.
Zhang, Yuan, Coello Pablo Alonso, Jan Brożek, Wojtek Wiercioch, Itziar Etxeandia-Ikobaltzeta, Elie A. Akl, Joerg J. Meerpohl, et al. "Using Patient Values and Preferences to Inform the Importance of Health Outcomes in Practice Guideline Development Following the Grade Approach." Health and Quality of Life Outcomes 15 (2017).
Zimmerman, Michael J. "Responsibility." In New Dictionary of the History of Ideas, edited by Maryanne Cline Horowitz, 2110-12. Detroit: Charles Scribner's Sons, 2005.
Zuckerman, R. B., S. C. Stearns, and S. H. Sheingold. "Hospice Use, Hospitalization, and Medicare Spending at the End of Life." J Gerontol B Psychol Sci Soc Sci 71, no. 3 (May 2016): 569-80.
Zulman, Donna, Steven M. Asch, Susana B. Martins, Eve A. Kerr, Brian Hoffman, and Mary K. Goldstein. "Quality of Care for Patients with Multiple Chronic Conditions: The Role of Comorbidity Interrelatedness.” Journal of General Internal Medicine 29, no. 3 (2014): 529-537.