Are There Limits to Patient Are There Limits to Patient

Autonomy? Autonomy?

Elizabeth Heitman, PhDElizabeth Heitman, PhDVanderbilt University Medical CenterVanderbilt University Medical Center

Center for Biomedical Ethics and SocietyCenter for Biomedical Ethics and Society

Challenges in Medicine, Law, and Ethics with Advance Directives

and DNR Orders (POST)

January 14, 2014

ObjectivesObjectives

1.1. Define the concept of “autonomy” in Define the concept of “autonomy” in

contemporary medical ethics, particularly related contemporary medical ethics, particularly related

to informed consent and the use of advance to informed consent and the use of advance

directives in end-of-life decision making;directives in end-of-life decision making;

2.2. Examine the kinds of knowledge that shape Examine the kinds of knowledge that shape

patients’ capacity for autonomous choices in patients’ capacity for autonomous choices in

end-of-life care and how caregivers can enhance end-of-life care and how caregivers can enhance

that knowledge.that knowledge.

Human LimitsHuman Limits

• All human activity has All human activity has practicalpractical limits: limits: ---- - - Knowledge, physical ability, time, courage Knowledge, physical ability, time, courage

• Illness introduces additional, new practical limits Illness introduces additional, new practical limits

but also new knowledge, experience, insightsbut also new knowledge, experience, insights

• Human activity also has social and moral limits Human activity also has social and moral limits

that typically depend on these practical limitsthat typically depend on these practical limits

- - Focus on the practical Focus on the practical

Definition of AutonomyDefinition of Autonomy

Self (Self (autosautos) + rule, governance () + rule, governance (nomosnomos))• Self determination, exercise of free will, Self determination, exercise of free will,

individual choiceindividual choice

““No right is held more sacred or is more carefullyNo right is held more sacred or is more carefully

guarded by the common law than the right of everyguarded by the common law than the right of every

individual to the possession and control of his ownindividual to the possession and control of his own

person, free from all restraints or interference by others,person, free from all restraints or interference by others,

unless by clear and unquestionable authority of law.”unless by clear and unquestionable authority of law.”

Union Pacific R. Co. vs. BotsfordUnion Pacific R. Co. vs. Botsford, 141 U.S. 250 , 141 U.S. 250 (1891)(1891)

Conditions for Autonomy Conditions for Autonomy

Virtually all theories of autonomy identify two Virtually all theories of autonomy identify two

essential conditions for an individual to be essential conditions for an individual to be

autonomous:autonomous:

• LibertyLiberty or independence from controlling forces or independence from controlling forces

• AgencyAgency or capacity for intentional action or capacity for intentional action

Principles of Biomedical Ethics, Principles of Biomedical Ethics, 55thth ed., ed.,

Tom L. Beauchamp & James F. Childress,Tom L. Beauchamp & James F. Childress,

Oxford University Press, 2001, p. 58Oxford University Press, 2001, p. 58

Definition of AutonomyDefinition of Autonomy

“ “Autonomy is not an univocal concept in either Autonomy is not an univocal concept in either

ordinary English or contemporary philosophy ordinary English or contemporary philosophy

and needs to be refined in light of particular and needs to be refined in light of particular

objectives.”objectives.”

Principles of Biomedical Ethics, Principles of Biomedical Ethics, 55thth ed., ed.,Tom L. Beauchamp & James F. Childress, Tom L. Beauchamp & James F. Childress, Oxford University Press, 2001, p. 58Oxford University Press, 2001, p. 58

Definition of Definition of PatientPatient Autonomy Autonomy

Self-determination and direction of the course ofSelf-determination and direction of the course of

one’s medical treatment, according to one’s one’s medical treatment, according to one’s

own values and preferences. own values and preferences.

Every human being of adult years and sound mind hasEvery human being of adult years and sound mind has

a right to determine what shall be done with his owna right to determine what shall be done with his own

body. body.

Schloendorff vs. Society of New York HospitalSchloendorff vs. Society of New York Hospital, 105 N.W. 92 (1914), 105 N.W. 92 (1914)

Primary Aspects of Autonomy Primary Aspects of Autonomy

Autonomous person – focus on Autonomous person – focus on capacitycapacity for self for self

determination, moral agencydetermination, moral agency

Autonomous choice – focus on independent, Autonomous choice – focus on independent,

informed decision making and actioninformed decision making and action

Principles of Biomedical Ethics, Principles of Biomedical Ethics, 55thth ed., ed.,

Tom L. Beauchamp & James F. Childress, Tom L. Beauchamp & James F. Childress,

Oxford University Press, 2001, p. 58Oxford University Press, 2001, p. 58

Context of Context of PatientPatient Autonomy Autonomy

Patient autonomy typically has been defined in Patient autonomy typically has been defined in

terms of a legal and moral right to terms of a legal and moral right to decidedecide and to and to

make choicesmake choices about one’s body, health, and about one’s body, health, and

medical treatment in the social context of amedical treatment in the social context of a

therapeutic relationship with physicians andtherapeutic relationship with physicians and

health care institutions who are also involved inhealth care institutions who are also involved in

the decisions and subsequent action.the decisions and subsequent action.

Autonomy and Informed ConsentAutonomy and Informed Consent

Both law and ethics focus on the process Both law and ethics focus on the process

and content of informed consent as the and content of informed consent as the

means to safeguard and promote patient means to safeguard and promote patient

autonomy through a partnership that is autonomy through a partnership that is

also potentially an adversarial also potentially an adversarial

relationship.relationship.

Open communication through informed Open communication through informed

consent creates and sustains partnership consent creates and sustains partnership

and prevents conflict.and prevents conflict.

Autonomy in the Ethical Ideal of Autonomy in the Ethical Ideal of Informed ConsentInformed Consent

Informed consent promotes patient autonomy Informed consent promotes patient autonomy

through shared decision making: through shared decision making:

• The physician presents reasonable medical options The physician presents reasonable medical options for benefit, consistent with standards of good clinical for benefit, consistent with standards of good clinical practice and professional judgment.practice and professional judgment.

• The informed patient chooses from among those The informed patient chooses from among those options, consistent with his or her personal values.options, consistent with his or her personal values.

The patient’s ability to give The patient’s ability to give informed consent depends on: informed consent depends on:

1)1) The patient’ capacity for decision making;The patient’ capacity for decision making;

2)2) The patient’s freedom of choice (freedom from The patient’s freedom of choice (freedom from coercion);coercion);

3)3) The physician’s adequate disclosure of The physician’s adequate disclosure of information regarding the decision or choice to information regarding the decision or choice to be made;be made;

4)4) The patient’s sufficient comprehension of that The patient’s sufficient comprehension of that information to make a reasoned decision or information to make a reasoned decision or choice.choice.

Legally adequate disclosure Legally adequate disclosure includes the patient’s includes the patient’s

comprehension ofcomprehension of

1)1) The diagnosis for which intervention is proposed;The diagnosis for which intervention is proposed;

2)2) The nature and purpose of the intervention;The nature and purpose of the intervention;

3)3) The intended benefits and anticipated risks of The intended benefits and anticipated risks of

intervention; and intervention; and

4)4) Alternatives to the proposed intervention, their Alternatives to the proposed intervention, their

intended benefits and anticipated risks, including intended benefits and anticipated risks, including

the benefits and risks of doing nothing.the benefits and risks of doing nothing.

The Limits of Patient Autonomy - #1The Limits of Patient Autonomy - #1

The traditional definition of informed consent limitsThe traditional definition of informed consent limits

the patient’s options to those presented by thethe patient’s options to those presented by the

physician as medically reasonable for the patient’sphysician as medically reasonable for the patient’s

circumstances and consistent with standards ofcircumstances and consistent with standards of

professional practice. Thus patients haveprofessional practice. Thus patients have

• Extensive freedom to refuse interventionExtensive freedom to refuse intervention

• Limited ability to demand interventions not Limited ability to demand interventions not recommended or offered to themrecommended or offered to them

Informed Consent and Autonomy in Informed Consent and Autonomy in End-of-Life Care in the 1970s-1980sEnd-of-Life Care in the 1970s-1980s

• Was consent necessary for life-saving treatment? Was consent necessary for life-saving treatment?

• Could a patient refuse intervention if refusal would Could a patient refuse intervention if refusal would lead to death?lead to death?

- if competent? - if competent?

- if terminally ill?- if terminally ill?

US courts repeatedly affirmed the right of an US courts repeatedly affirmed the right of an autonomous individual to refuse medical autonomous individual to refuse medical intervention, even if refusal would lead to his intervention, even if refusal would lead to his or her death.or her death.

Extending Patients’ Autonomy into Extending Patients’ Autonomy into the Uncertain Futurethe Uncertain Future

In the 1970s, early proponents of “living wills”In the 1970s, early proponents of “living wills”

claimed that the right to informed consent extended claimed that the right to informed consent extended

to decisions made by autonomous patients in theto decisions made by autonomous patients in the

present about possible treatment options in an present about possible treatment options in an

uncertain future.uncertain future.

““Advance directives” were developed so that Advance directives” were developed so that

autonomous individuals (often not yet “patients”)autonomous individuals (often not yet “patients”)

Could document consent or refusal for hypothetical Could document consent or refusal for hypothetical

treatments in advance of need. treatments in advance of need.

The Limits of Patient Autonomy - #2The Limits of Patient Autonomy - #2

What knowledge does the autonomous patient What knowledge does the autonomous patient

need need todaytoday to make autonomous decisions and to make autonomous decisions and

about choices about hypothetical decisions in the about choices about hypothetical decisions in the

uncertain future? Is the standard of disclosure foruncertain future? Is the standard of disclosure for

informed consent possible?informed consent possible?

1)1) The diagnosis for which intervention is proposed;The diagnosis for which intervention is proposed;

2)2) The nature and purpose of the intervention;The nature and purpose of the intervention;

3)3) Its intended benefits and anticipated risksIts intended benefits and anticipated risks

4)4) Alternatives, their intended benefits and anticipated risksAlternatives, their intended benefits and anticipated risks

How do individuals (patients) develop How do individuals (patients) develop “treatment preferences” about EOL care?“treatment preferences” about EOL care?

• Information from authoritative medical sourcesInformation from authoritative medical sources• Patient education materialsPatient education materials• Authoritative internet sitesAuthoritative internet sites

• Information from unofficial sourcesInformation from unofficial sources• Popular media (both as “information” and stories)Popular media (both as “information” and stories)• Family and friendsFamily and friends

• Personal experience with others’ illness and Personal experience with others’ illness and deathdeath

• Limited and inconsistent for most AmericansLimited and inconsistent for most Americans

The Limits of Patient Autonomy - #3The Limits of Patient Autonomy - #3

What knowledge do autonomous individuals need What knowledge do autonomous individuals need

to make autonomous decisions and choices about to make autonomous decisions and choices about

future medical intervention?future medical intervention?

• Factual (intellectual) medical knowledgeFactual (intellectual) medical knowledge• Likely diagnoses, interventions, effectivenessLikely diagnoses, interventions, effectiveness

• Self knowledgeSelf knowledge• Personal values, preferences, fears, sources of meaningPersonal values, preferences, fears, sources of meaning

• Experiential knowledge and related insight Experiential knowledge and related insight • Coping with uncertainty, pain, suffering, limits, lossCoping with uncertainty, pain, suffering, limits, loss

• Sources of resilience Sources of resilience

Efforts to promote patients’ autonomy Efforts to promote patients’ autonomy

procedurally through advance directives procedurally through advance directives

need to include efforts to provide multi-need to include efforts to provide multi-

faceted knowledge for autonomous choice faceted knowledge for autonomous choice

about EOL care.about EOL care.

• The real ways we dieThe real ways we die• The potential and limits of medical interventionThe potential and limits of medical intervention• The real costs of EOL care (financial, personal)The real costs of EOL care (financial, personal)• Skills for facing uncertaintySkills for facing uncertainty• The transformative experience of a “good” deathThe transformative experience of a “good” death

The Limits of Patient Autonomy - #4The Limits of Patient Autonomy - #4

Institutional policies and procedures for decisionInstitutional policies and procedures for decision

making at the end of life EOL care that focus on making at the end of life EOL care that focus on

traditional disclosure of risks and benefits stresstraditional disclosure of risks and benefits stress

generalized factual information, not evidencegeneralized factual information, not evidence

based, knowledge in context. based, knowledge in context.

Patients are unlikely to make autonomous EOL care Patients are unlikely to make autonomous EOL care

decisions with only this incomplete medical knowledge.decisions with only this incomplete medical knowledge.

Gaps in experiential and self knowledge may leadGaps in experiential and self knowledge may lead

seemingly autonomous patients to make choices seemingly autonomous patients to make choices

inconsistent with their true values or preferences.inconsistent with their true values or preferences.

Do your institution’s policies Do your institution’s policies

support or hinder patients’ support or hinder patients’

autonomous decision making and autonomous decision making and

meaningful choices ?meaningful choices ?• CPR and DNR/ DNI orders (incl. in the OR)CPR and DNR/ DNI orders (incl. in the OR)

• DialysisDialysis

• Tubal feeding and hydrationTubal feeding and hydration

• Advance directivesAdvance directives

• Surrogate decision makingSurrogate decision making