2 licensed practical nurses 3 radiologic techno

Orlando Regional Healthcare, Education & Development Copyright 2004

Rev. 11/11/2004

This self-learning packet is approved for 2 contact hours for the following professionals: 1. Registered Nurses 2. Licensed Practical Nurses 3. Radiologic Technologists (personal development credit) * This packet should not be used after 11/2006.

Improving End-of-Life Care

Copyright 2004 Orlando Regional Healthcare, Education & Development

TABLE OF CONTENTS

Purpose.......................................................................................................................3

Objectives...................................................................................................................3

Instructions.................................................................................................................3

Introduction................................................................................................................5

End-of-Life Care Needs .............................................................................................5

Factors That Impact End-of-Life Care.......................................................................6

Legal & Ethical Issues ............................................................................................................... 6 Patient Rights ............................................................................................................................. 8 Medical Care ............................................................................................................................ 11 Financial Issues in End-of-Life Care ....................................................................................... 15 Culturally Competent End-of-Life Care .................................................................................. 16 Spirituality/Religion................................................................................................................. 17

Initiatives to Improve End-Of-Life Care .................................................................18

Regulatory Mandates and Legislation...................................................................................... 18 Healthcare Provider Education ................................................................................................ 19 Caring For Professionals Who Provide End-of-Life Care ....................................................... 20

Conclusion ...............................................................................................................21

Posttest .....................................................................................................................22

Appendixes...............................................................................................................27

Appendix 1 - JCAHO Standards Regarding End of Life Care ................................................ 27 Appendix 2 - Resources ........................................................................................................... 28

References ................................................................................................................29



Purpose The purpose of this self-learning packet is to present nurses with current information that will assist in improving end-of-life patient care. This packet meets Florida State requirements for end-of life care continuing education credit for nursing licensure. End of life care education may be substituted for HIV/AIDS education every other biennium (re-licensure period).

Orlando Regional Healthcare is an Approved Provider of continuing nursing education by Florida Board of Nursing (Provider No. FBN 2459) and the North Carolina Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation (AP 085).

Objectives On completion of this self-learning packet, the reader will be able to:

1. Identify end-of-life care needs

2. Describe legal/ethical issues involved in end-of-life care

3. Discuss the rights of patients regarding self-determination, advance directives and decision making to end-of life care

4. Discuss the legal implications of advance directives

5. Describe the impact of culture and language on end of life care

6. Distinguish between palliative care and curative care

7. Describe pain, comfort and symptom assessment and management for terminal patients

8. Discuss initiatives to improve end-of-life care

9. Cite applicable Florida laws on end-of-life care

Instructions In order to receive 2.0 contact hours, you must:

• complete the posttest at the end of this packet • submit the posttest to Education & Development with your payment • achieve an 84% on the posttest

Be sure to complete all the information at the top of the answer sheet. You will be notified if you do not pass and asked to retake the posttest.



“The way people die remains in the minds of those left behind.” Dr. Cecily Saunders, founder of the modern hospice.



Introduction During the last century, advances in medicine and technology have significantly contributed to the reduction of mortality rates. Average life expectancy in the United States (U.S.) has increased from 49 years in the 1900s to 77.26 years in 2001. The 2000 census revealed that individuals in the 85 years and older age group had the highest percentage increase during the previous decade and that there is a substantial number of Americans over 100 years old.

It is believed that these advances in medicine and technology have also contributed to the prolongation of the dying process. New drugs and medical procedures are permitting many people suffering from chronic illnesses such as heart disease, cancer, stroke, chronic obstructive pulmonary disease, and human immunodeficiency virus (HIV) to survive for longer periods of time than they would have 20 years ago. “Death” was once defined as the cessation of breathing and heart beat. Today, technology that permits the detection of brainwaves and electrical activity of the heart (electroencephalograms and electrocardiograms) has redefined the definition of death.

With an aging society and such widely publicized issues as assisted suicide, withdrawal of life-sustaining treatment, and lack of consistent appropriate terminal pain and symptom management; end-of-life care in the U.S has become a key source of concern for the public and for healthcare professionals. Since Florida has the highest percentage of its population in the 65 years and older group (17.1%) and the 3rd highest number of HIV/AIDS patients in the nation, end-of-life care issues are of vital importance to the legislators and healthcare providers in this state.

End-of-Life Care Needs Approximately 70% of respondents to a recent national survey that included terminally ill patients, recently bereaved family members and healthcare providers reported that having certain needs met was crucial to quality care at the end-of-life. These needs include freedom from pain, peace with God or a higher being, presence of family, compliance with treatment choices, finances in order, resolution of conflicts, and dying at home.

With roughly 2.5 million deaths in the U.S. each year, the process of dying creates end-of-life care needs that vary according to the individual’s circumstances. The table on the right lists the issues that play an important role in determining the end-of-life needs for each individual.

Issues impacting end-of-life care: • Ethics • Legislation • Medical care • Access to medical care • Cultural beliefs and practices • Socioeconomic status • Religion • Family dynamics • Generation attitudes



Factors That Impact End-of-Life Care

Legal & Ethical Issues Ethical problems occur because of conflicts in a society’s moral principles, values and laws. Many basic ethical problems associated with healthcare surface during the decision making process for end-of-life care. These problems require the involvement of the patient, significant others, legal representative and healthcare provider. The Standards of Professional Nursing Practice, Code for Nurses, and the Nurse Practice Act provide guidance on codes of ethical conduct and scope of practice for nurses. Other organizations such as the American Nurses Association, American Medical Association, Agency for Healthcare Administration, and the Joint Commission on Accreditation of Health Care Organizations (JCAHO) have also developed policy statements, standards and guidelines for end-of-life care that incorporate core ethical principles (see Appendix 1). Some of these principles along with potential legal implications will be discussed in the following sections.

Confidentiality

Confidentiality is one of the ways in which the basic human right to privacy is acknowledged and respected. For healthcare workers, confidentiality includes maintaining the privacy of patients’ privileged information. An example is the case of a patient in the terminal stages of HIV who wishes to die at home but does not want to divulge the particulars of his/her disease process to certain family members. In caring for this patient, the healthcare provider faces the dilemma of providing adequate information to educate the patient’s caregiver and/or family and at the same time maintaining patient confidentiality.

Confidentiality is an ethical as well as legal matter, and in most institutions healthcare employees who violate patient confidentiality are terminated. Since there are laws that protect patients’ healthcare information, legal action may also be taken against these employees especially if the information divulged was “superconfidential protected health information” related to HIV/AIDS, sexually transmitted disease, mental health, drug and alcohol abuse. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) provided the first comprehensive federal protection for the privacy of health information. HIPAA requires the implementation of communication, privacy and security standards for the protection of healthcare information.

Beneficence and Nonmaleficence

Two other ethical concepts are “beneficence” (doing good) and “nonmaleficence” (not inflicting harm intentionally). Healthcare providers have the moral and legal obligation for beneficence. The problem occurs when doing good involves maleficence (intentionally inflicting harm). This is the “double effect concept” and may be illustrated by assisting someone to die (active euthanasia /physician-assisted suicide). It could be argued that assisting the patient to die is intentionally inflicting harm, yet it is doing good as the person would no longer be suffering. Nurses may not participate in assisted suicide or active euthanasia since The American

Active Euthanasia Someone other than the patient acts with the intent to end the patient's life. For example, deliberate administration of a lethal injection dose.



Nurses Association’s Code for Nurses explicitly forbids nurses to “act deliberately to terminate the life of any person.”

In 1997, the ban on assisted suicide was lifted in Oregon when the Ninth Circuit Court of Appeals implemented the 1994 Death with Dignity Act. Currently, Oregon is the only state that permits terminally ill residents to hasten their own deaths, thereby making physician-assisted suicide a legal option for terminally ill patients within the state.

Dilemmas, such as physician-assisted suicide, euthanasia and providing or withholding/withdrawing life-prolonging procedures and treatment, are currently being debated and legislated. These issues continue to be great sources of controversy. Today most states have laws governing end-of-life care decisions; however, the laws are complex and the language is unclear, making them subject to interpretation. This has resulted in numerous legal battles between family members and between family and healthcare providers. Education concerning end-of-life laws is greatly needed.

Justice

Justice signifies what is fair, equitable, and appropriate. Justice impacts decisions regarding extravagant utilization of certain life sustaining treatments as well as allocation and rationing of scarce resources such as donated organs. All appropriate parties affected by end-of-life care choices must be involved in the decision making process to ensure equitable and ethical treatment of all patients.

Capacity and Competence

Capacity and competence are important concepts that are also prominent in the end-of-life decision-making process. Capacity refers to the patient’s mental status and may be dependent on a disease process. Incapacity is defined as having a physical or mental condition that affects judgment so that the ability to make a health care decision is impeded. The attending physician makes a determination of incapacity. Competence implies that the individual is deemed to have the legal authority, qualification or ability to make decisions on his or her own behalf. Only a judge in a court of law can determine if a patient is competent or not.

Without capacity and competence, patients cannot give informed consent for medical care. (Informed consent is a voluntary, uncoerced agreement of a competent individual who has the capacity to choose, and has been made fully aware of the implication of that choice, to accept the actions of another on their behalf.) Therefore, decisions such as a Do Not Resuscitate (DNR) order would be invalid if made by a patient who lacked capacity or was declared incompetent. Individuals deemed incompetent by the courts to make healthcare decisions for themselves will have a guardian assigned. Either the guardian or a previously assigned healthcare surrogate would then make healthcare decisions for the incompetent person.

State Laws Regarding End-of-Life Care • Texas/Washington: Natural Death Act • Connecticut: Removal of Life Support

Systems Act • Arizona: Medical Treatment Decision Act • Florida: Florida Living Will Statute (F.S. 765)



Autonomy

Autonomy implies that each person has the right to make decisions regarding his or her own life. The Patient Self-Determination Act of 1991, a federal law, was implemented to conform to this belief of autonomy. This law states that competent adults have the constitutional right to make certain choices about their own medical treatments that will be upheld if they become incapacitated and incapable of making a decision in the future. Patients should be encouraged to make these choices and discuss them with significant others and healthcare providers while they are fully capable of making these decisions.

Having knowledge of information that impacts autonomy and decision making is of great importance to healthcare providers in assisting patients and their families in their choice of care during the end-of-life period. It has been suggested that lack of knowledge and training in end-of-life care for healthcare providers may be one reason for poor medical management. Nurses surveyed by researchers at the City of Hope Cancer Center in California stated that they were not adequately trained to provide pain management and overall end-of-life care.

Healthcare providers are responsible for knowing state laws regarding advance directives and end-of-life care in order to be patient advocates who will respect patient and family decisions and promote optimum quality of life for the terminally ill. The following sections contain some of the basic statutes that impact the end-of-life decision-making process.

Patient Rights

Advance Directives

An advance directive is a witnessed written document or oral statement in which a competent adult either states choices for medical treatment or designates who should make treatment choices if the person should lose decision-making capacity (including anatomical gift) or both. The Patient Self-Determination Act requires that all hospitals receiving federal funding must ask each incoming patient whether or not that patient has a living will or has designated a healthcare surrogate. In addition, the hospital must give an explanation of its policy regarding advance directives and inform the patient if some of the provisions in their advance directive violate hospital policy and cannot be carried out (e.g., request for physician-assisted suicide).

Living Will A living will is a legal document which allows patients to specify the types of life prolonging health care procedures or treatment they wish to receive in the event that they have a terminal, end-stage condition or are in a persistent vegetative state and unable to express personal wishes. Patients can change or revoke their living will at any time, and the living will remains in effect until revoked. Living wills do not require a notary but must be signed by the patient and two witnesses. Only one witness may be a spouse or a blood relative. The living will goes into effect when a patient is deemed to be in a terminal condition, end-stage condition or persistent vegetative state, as defined by Florida law, and no longer has the capacity to make care decisions.

Common Forms of Advance Directives • Living Will • Healthcare Surrogate • Durable Power of Attorney



Healthcare Surrogate A “healthcare surrogate designation” is a signed and witnessed paper naming another person as an agent to make medical decisions and apply for benefits in the event the patient is unable to do so. The healthcare surrogate is usually a family member or friend who should be acquainted with the patient’s wishes and acts only if the patient becomes incapacitated. Healthcare decisions are made based on what the patient would have wanted (if this is known) or what is in the best interest of the patient.

Decisions a Healthcare Surrogate Can Make

Decisions a Healthcare Surrogate Cannot Make

• All healthcare related decisions • Consent for treatment including

withholding or withdrawing life support

• Access and release of medical records • Authorize admission to or transfer from

a healthcare facility • Apply for public benefits and, for this

purpose, have access to information concerning income and assets

• Consent for abortion • Consent for sterilization • Consent for electroshock therapy • Consent for psychosurgery • Consent for experimental treatments that

have not been recommended by a federally approved institutional review board

• Voluntary admission to a mental health facility

• Withholding or withdrawing life-prolonging procedures from a pregnant patient prior to viability

Durable Power of Attorney A Durable Power of Attorney is a legal document authorizing another to act as an agent (Attorney-in-Fact) for the patient. In Florida, a patient can name a person in their DPA to make medical decisions. Because a DPA also deals with property, it is customary to consult an attorney before signing this document. The DPA becomes effective at the time the attending physician determines that the patient is incapacitated.

Healthcare Proxy

In Florida, there is no legal requirement to have a written advance directive. However, if a healthcare surrogate has not been designated, healthcare decisions can be made by a healthcare proxy. Florida law designates the order of priority for the selection of the healthcare proxy. A healthcare proxy is appointed by the hospital based on law and after discussion with the family. The healthcare proxy is valid only for the current hospitalization.

Healthcare Proxy Selection Order of Priority

1. Legal guardian 2. Spouse 3. Adult child 4. Parent 5. Adult sibling 6. Adult relative 7. Close friend



Do Not Resuscitate (DNR)

The Patients’ Bill of Rights states that patients have the right to refuse resuscitation; therefore, personal wishes made in an advance directive may include Do Not Resuscitate (DNR) orders. It is important that healthcare providers understand that although the patient will not be resuscitated, DNR orders will not prevent them from providing quality end-of-life care.

There are different levels and choices of resuscitation that can be made by the patient. Types of resuscitation include full resuscitation, limited resuscitation and no resuscitation. If the patient is incompetent, the healthcare surrogate/proxy in conjunction with the physician can make the decision not to resuscitate.

The Florida State Pre-hospital Do Not Resuscitate Order (DNRO) Form 1896 (available from the Florida Division of Emergency Medical Services) is designated for use outside the hospital setting. It provides DNR coverage for in home transport, the hospital Emergency Department, and continues until a Do Not Resuscitate (DNR) order is written. The physician may write an in-hospital DNR order based on the existence of the Florida State pre-hospital DNRO.

Life Prolonging Procedure

Patients may select not to have any life prolonging procedure. According to Florida Statute 765.101, “Any medical procedure, treatment, or intervention, including artificially provided sustenance and hydration, which sustains, restores or supplants a spontaneous vital function” is referred to as a life prolonging procedure.

Withholding/Withdrawal of Life Support

Withholding and withdrawing life support is a complex medical and legal issue that involves decisions by the patient, significant others, physicians, and institutional ethics committees. A court of law may also become involved in the event of disagreements regarding the benefits of a treatment (medical futility). Two physicians, the attending and another directly involved in the patient’s care, must agree and document that the patient is indeed in a “terminal, end-stage condition or persistent vegetative state” as defined by Florida Statute (F.S. 765.101).

If the patient is terminal, end-stage or in a persistent vegetative state, the living will is then activated to carry out the patient’s wishes. If a living will does not exist, the healthcare surrogate/proxy may make decisions that reflect the patient’s wishes or are in the patient’s best interest. If there is no designated surrogate or available proxy, a legal guardian must be assigned by the court. The guardian may consent to withdraw or withhold life-prolonging procedures after conferring with the physician and ethics committee.

Examples of Life Prolonging Procedures • Ventilators • Temporary pacemakers • Dialysis • Nutrition (tube feedings, etc.) • Hydration • Blood/blood products • Medications: antibiotics, pressor agents,

antihypertensives



Medical Care

Curative care

An obvious need at the end-of-life for the majority of terminally ill patients is medical care. Curative care, as the name suggests, aims at finding a cure for the disease or condition and preservation of life. Treatment is usually aggressive and may include traditional as well as experimental regimens.

Palliative Care

Traditionally, the emphasis of physician training in medical school is on curing, and very little training is provided concerning end-of-life care. To provide optimal end-of-life care, healthcare providers must realize that if a cure is not possible, then palliative care should be established to alleviate suffering. Comfort care (palliative care) aimed at pain and symptom management is needed in most instances. However, for many dying patients, these needs are not met. Studies show that pain and suffering were end-of-life issues that were of particular concern to the population in general because they were often not managed during the dying process. Additionally, the elderly, the poor, non-English speaking people, and minorities (such as Blacks, Hispanics and women) were more likely to die in pain than others were in the United States.

Palliative care is a medical discipline that has developed rapidly over the last 30 years. It has created numerous types of medications and techniques to alleviate even the most severe and unrelenting pain. Palliative care is associated with the hospice philosophy and it extends the hospice approach to care to include a broader range of services for the terminally ill. Palliative care may be delivered in a healthcare facility or at home.

Similar to curative care, palliative care is aggressive treatment of pain and symptoms associated with a terminal or life threatening illness. In contrast to curative care, however, palliative care requires a marked shift in the goals of care and the manner in which care is delivered.

The World Health Organization (WHO) defines palliative care as “the active total care of patients whose disease is not responsive to curative treatment.” Total care includes:

• Management of pain and other symptoms

• Integration of the psychological and spiritual aspects of care

• Offering support systems to assist the patient and family with coping and bereavement issues during the patient’s illness

WHO further explains that palliative care “affirms life and regards dying as a normal process, neither hastening nor postponing death.”

The National Consensus Project for Quality Palliative Care also identifies the goal of palliative care as “prevention and relief of suffering and measures to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies.” Therefore, palliative care focuses on symptom management, comfort and preservation of the best possible quality of life until death rather than prolonging survival and eradicating disease.



Palliative care is not dependent upon the Medicare hospice benefit-defined requirement for the 6-month or less prognosis. Consequently, palliative care encourages skilled interventions sooner and it is often initiated early in the course of end-stage disease thus promoting improved quality of care. An estimated 6200 patients per million U.S. population dying from terminal diseases are in need of palliative care.

Clinical Practice Guidelines for Quality Palliative Care

The National Consensus Project for Quality Palliative Care, undertaken by five major U.S. palliative care organizations, published “Clinical Practice Guidelines for Quality Palliative Care” in April 2004 to address the critical need for consistent high quality palliative care for an aging, chronically ill population.

These guidelines, centered on eight domains of quality palliative care, were created to direct the development and structure of new and existing palliative care services by promoting:

• Equitable access to palliative care for all, regardless of age, diagnoses, health care settings, race, ethnicity, sexual preference or ability to pay

• Consistent high quality of care through quality improvement and the pursuit of and commitment to excellence

• Care that was timely, efficient, beneficial and/or effective

• Knowledge and evidence-based patient-centered care

Hospice Care

The modern hospice program began in London in the 1960s and was established in the United States at New Haven, Connecticut, in 1974. By 1998, 44 states had licensed hospices. At the end of 2001, there were over 3,200 hospice programs providing service for 775,000 patients in the United States and its territories.

Eight Domains of Quality Palliative Care 1. Structure and Processes of Care 2. Physical Aspects of Care 3. Psychological and Psychiatric Aspects of

Care 4. Social Aspects of Care 5. Spiritual, Religious and Existential

Aspects of Care 6. Cultural Aspects of Care 7. Care of the Imminently Dying Patient 8. Ethical and Legal Aspects of Care

0

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Number of Hospice Programs

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1994 1996 1998 2000

Number of Hospice Patients



The philosophy of hospice care is that death is a normal part of life. Thus, hospice care focuses on improving the dying person’s quality of life and assisting the patient, significant others, and caregivers to cope with the impending death. Hospice is a community-centered, patient and family focused, cost effective way of humanely caring for terminally ill persons. While 80% of hospice care is provided at home, it may also be provided in a hospice facility, hospital, nursing home or assisted living facility.

Hospice programs utilize an interdisciplinary team approach for the provision of services. Included in the team are physicians, nurses, social workers, nutritionists, physical and occupational therapists, pain management specialists, chaplains, and volunteers. Aside from medical care, hospice programs provide a variety of services including, grief counseling and bereavement services for loved ones and caregivers for up to 13 months after the death of the patient.

Medicare offers approximately 75% of hospice care coverage that is contingent on having a life expectancy of six months or less and foregoing curative treatment. Change is needed in the healthcare system to ensure free access to hospice care and full healthcare coverage for all terminally ill patients.

Pain Management

The International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage.” Pain is a combination of physical, emotional, psychosocial, and spiritual/existential factors. All factors and aspects of pain must be assessed and addressed in order to manage the terminal patient’s pain effectively.

The key to assessing and managing physical pain is determining its location, etiology and intensity. For terminal patients, pain may be chronic or acute. They may also experience breakthrough pain, which is defined as an unpredictable episode of severe pain that is not controlled by the patient’s current pain interventions or medications.

Nociceptive pain (pain that is associated with tissue and organ damage) may be somatic or visceral. Somatic pain (occurring when certain pain receptors are stimulated) is usually well localized and constant and is described as aching, gnawing, tender, deep, throbbing, or sharp. Many terminal patients with bone metastases experience this type of pain. Visceral pain (experienced as cramping, spasms, pressure, squeezing) is caused by stimulation of pain receptors due to stretching or distension of pelvic, thoracic or abdominal organs. Nociceptive pain usually responds to opioids but may require adjuvants such as non-steroidal anti-inflammatory drugs (NSAIDS).

Neuropathic pain (shooting, burning, stabbing, and tingling) caused by injury to nerves or by diseased nerves remains a problem for treatment in dying patients. It responds inadequately to opioids, and so the use of adjuvant drug therapy such as tricyclic antidepressants, anticonvulsants, local anesthetics and modulators of specific nerve transmission pathways are recommended.

Pain Assessment

Hospice Program Services • Medical care • Psychological care • Spiritual care • Financial counseling • Social services • Housework assistance • Running errands • Activities of daily living • Respite care



Pain is a subjective symptom best defined by the patient, so self-report is the most accurate indicator of pain and its intensity. Therefore, when conducting a pain assessment, it is necessary to ask patients if they have pain. If a patient is unable to respond, initial pain screening and assessment may be based on behaviors and physiological changes although these are not always specific. Tools used for self-report of pain intensity include the Visual Analog Scale or numeric scale of 0-10, the 0-5 numeric scale, and the Wong-Baker Faces Pain Scale.

The Pain Experience

Not everyone responds to pain the same way. The manner in which individuals perceive pain, both in themselves and in others, and how and when they communicate their pain to healthcare providers may be influenced by cultural and ethnic considerations of the patient, family and healthcare providers.

Some cultural groups perceive suffering as an expected part of life, especially in the elderly. Others see pain as having redeeming value or as atonement for their wrongdoing and for purification of their souls.

Additional beliefs observed include a negative association with pain medications. Lack of knowledge and lingering fears such as, “the morphine killed my grandfather so I don’t want that to happen to me,” prevent patients from obtaining adequate pain management. Some patients say, “I’d better save the medication for later, when the pain is intolerable.” Others may think “the more the pain medication, the sicker I am, so I’d better half it!” A caregiver may also not report when the dying patient was in pain if the caregiver fears that others will perceive that care was inadequate.

When these beliefs (mentioned above) are prevalent, pain is likely to be underreported. Professionals need to address and find alternative measures to lessen these fears that are very real to some patients and families. Collaboration with the patient, family and healthcare team is essential to manage the patient’s pain and meet comfort and mobility goals. No one has to die in pain.

Symptom Management

It is estimated that about 60% of terminally ill patients suffer from nausea while at least 80% of patients with advanced HIV or cancer are cachectic (severe malnutrition with weakness and muscle wasting). Signs that death may be imminent include diminished or loss of consciousness, restlessness, cool and/or mottling extremities and incontinence.

Numeric/Descriptive Pain Intensity Scale Wong-Baker Faces Scale

Samples of Pain Assessment Scales



Common Symptoms Associated with Terminal Illness • Dyspnea • Vomiting • Dysphagia • Anorexia • Constipation • Diarrhea

• Bowel obstruction • Itching • Diaphoresis • Sepsis • Sedation • Dry mouth

• Fatigue • Delirium • Anxiety • Agitation • Depression • Terminal restlessness

For quality end-of-life care, it is important that healthcare providers manage symptoms appropriately. This may involve not only medical treatment but also simple, compassionate actions such as holding the patient’s hand to let them know that they are not dying alone. Patients may also benefit from listening to calm music, poetry readings, and interaction with pets. Symptom management includes ethical issues such as beneficence, nonmaleficence and autonomy that were previously discussed. Relieving the patient’s pain is an example of beneficence, but administering pain medications which also have related side effects may involve the principle of nonmaleficence. Patients and their families must be given the autonomy to make informed care decisions based on communication with healthcare providers.

Financial Issues in End-of-Life Care Many procedures and much of the technology employed in sustaining life are very costly and unaffordable in some cases. To obtain adequate medical care in this country, some form of healthcare coverage is needed. Medicare covers those in the 65 years and older group, and Medicaid covers another 40 million low-income residents. However in 2000, it was estimated that there were 44 million Americans without health insurance coverage.

Byock (1997) states that the present healthcare situation has resulted in many people becoming paupers because they are “not dying quickly enough” from their terminal disease. A major worry of dying patients is impoverishment of their families. The current national healthcare financial policies and the healthcare system in general were not designed to deal with the needs of the chronically ill patient and limit the resources for their care. Part A of the Medicare Hospice Benefit provides some services at little or no cost to patients and families; however, they are not adequate to meet the needs of all terminal patients.

Numerous employers are decreasing or not offering health benefits to their employees. Many older chronically ill retirees are unable to afford the escalating high cost of individually procured healthcare coverage. Over 40% of uninsured adults omit suggested medical treatments or tests due to their lack of healthcare coverage. By the time many of these uninsured patients seek medical help, they are more likely to be diagnosed with the late stages of their disease. For example, death rates for uninsured women with breast cancer are significantly higher than for insured women possibly because the uninsured were 60% less likely to have a mammogram. Unfortunately, inadequate healthcare coverage, especially for dying patients, is approaching crisis proportions in this country.



Culturally Competent End-of-Life Care The custom of welcoming “the tired, the poor, the homeless” (as stated on the Statue of Liberty) has resulted in increased immigration of people of all races, cultures, languages, and socioeconomic backgrounds from around the world into the United States. The rapid and intense growth of immigrant populations, compounded by tremendous economic, social, and political factors, prevents large numbers of immigrants from assimilating into the American mainstream as they did in the past. As a result, culture and language differences can become insurmountable barriers, particularly when medical services are needed and even more so in advanced critical and end-of-life care situations. Many patients experience significant difficulties accessing medical services in a timely manner, communicating adequately with providers, and understanding and adhering to treatments.

Culture and Ethnicity

Culture and ethnicity shape values, behaviors, and institutions such as the health care system. They influence the way patients seek and respond to medical services as well as how clinicians deliver those services. Culture and ethnicity also affect choices that individuals make for life support (e.g., CPR, nutritional support). They also impact preferences regarding being informed of a terminal diagnosis - dying at home, in the hospital, or in a hospice - and for making quality of life choices at the end-of-life. For example, it is disrespectful to discuss advance directives with many Hispanics and Asians because of the belief that pre-planning could take hope away from their loved one, or even bring on death. Research has also shown that non-white patients are less likely to choose comfort care over life prolonging measures at the end-of-life. Hispanics and African Americans more frequently show high preference for aggressive end-of-life treatment such as CPR, respirators, and nutritional support via feeding tubes. They want their doctors to keep them alive regardless of their condition.

As in the rest of the nation, Central Florida is rapidly becoming more culturally and linguistically diverse. In this community, health care practitioners daily encounter patients and families with very different beliefs and perceptions about illness, death, healing practices, and expectations of health care professionals and institutions.

To provide appropriate care in such a culturally and ethnically diverse community, health care professionals and institutions are being called on to increase their cultural competence. Cultural competence is best understood as “whatever it takes to respond effectively and with sensitivity to racial and ethnic differences as they impact healthcare access, delivery and outcomes” (definition created March 6, 2002, by the Diversity Guide Team of the Primary Care Access Network of Orange County, Florida). A major component of this competence is increased knowledge and understanding about the common beliefs, attitudes, and practices of the communities in the service areas. This will aid in reducing the number of documented health disparities among patients of color in the U.S.

An important caution, however, is that healthcare providers must avoid cultural stereotyping. Knowledge and awareness of diverse groups should only be used as a general guideline for providing care. Healthcare providers should develop skills in assessing individual and family preferences in order to incorporate them into the plan and provision of care for each patient.



Family Dynamics

In many ethnic and cultural groups, the family plays a central role in the healthcare decision making process and how much information is given to the patient, particularly at the end of life. Patients may choose to defer to the rest of the family or a designated family member to make choices for them. Frequently, decisions are made considering the interest of the group rather than that of the individual patient, which seems to be in contradiction with the prevailing premises of the Patient Self-Determination Act (encourages the use of advance directives so the patient’s wishes are carried out). Gender issues, such as discussions being directed to the male head of the family in some traditional families and certain cultures, may also impact decision making at end-of-life. In addition, some ethnic groups may have large, closely-knit extended families. This increases the complexity of decision making and the time required to include all participants, particularly those coming from distant places.

Caring for the terminally ill patient usually involves many family members. Family members and caregivers also have emotional and physical needs. Recognizing and supporting them for their cost saving contribution to society through the dedication and care they provide could help them though the grieving process.

Communication

One area in which the lack of healthcare provider training has been apparent is communication with the terminal patient. Although communication is imperative in the healthcare provider-patient relationship, adequate communication remains a major unmet need for terminal patients.

Language and cultural barriers further complicate the situation. Elderly dying patients from other cultures may have limited English and/or a lower literacy level. They are faced with lengthy consent forms and complex treatment decisions that demand a high literacy level. Usually acculturation (assimilation into the native culture) is associated with increased proficiency in the dominant language and easier communication. However, at the end-of-life, it is common to see patients who might have been highly acculturated and very fluent in English to revert to their first language and lose the ability to communicate with their own families.

Even when healthcare professionals are of similar cultural groups and language, generational differences must be taken into consideration to ensure appropriate communication. Frequently, a respectful demeanor when addressing elderly patients and their relatives will contribute significantly to greater well being and satisfaction with services that are being provided.

Spirituality/Religion Although the medical aspect of care may be continually assessed and managed, many terminal patients report that spiritual needs are rarely addressed. Spirituality is a basic element of one’s identity. It involves not only an organized system of worship as in a religion, but it is the process of discovering the meaning and reason for existing and also for establishing a relationship with God and the universe.

The individual’s spirituality and religious beliefs will predominantly determine many decisions at the end-of-life. It is common for patients who initially may not have identified



any spiritual or religious preferences to request the presence of a spiritual leader or the administration of a sacrament or ritual during their last few days of life. Healthcare providers can assist patients and their families to cope with the dying process by respecting and fostering practical expressions of spirituality. An example is ensuring privacy so that the family or religious leader can perform rituals that are important to the patient.

Grieving

Grief is a state of mental anguish normally resulting from the loss or anticipated loss of a valued person or thing. This means that not only the remaining family will grieve, but the dying person may also grieve for his lost time, missed opportunities and perceived mistakes. In addition to emotional effects, grief may have physiological, behavioral and even intellectual manifestations. Grieving may also help individuals to make sense of their lives and allow them to move on.

A primary concern of healthcare workers is to help others deal with grief. It is important to bear in mind that different cultures as well as different individuals respond to grief in varying ways. Helping patients or their families with the grieving process does not mean shielding them from this pain, but it involves recognizing, supporting, encouraging, and allowing them to express grief in their own individualized manner.

Initiatives to Improve End-Of-Life Care

Regulatory Mandates and Legislation As indicated previously, lack of adequate pain relief is a major end-of-life issue. Many healthcare organizations are addressing this issue. In 2000, the Veterans Health Administration mandated their healthcare providers to routinely assess, document and treat pain as they would the other four vital signs (blood pressure, pulse, respirations and temperature), thus dubbing pain as the “fifth vital sign.” California, Ohio and New Jersey were the first states to enact laws to improve pain management.

The Joint Commission on Accreditation of Healthcare Organizations added Pain Standards in 2000 to address inadequate pain management, which has become a public health problem. These Pain Standards are forcing healthcare institutions to reexamine their pain management practices and to develop adequate pain management programs that meet the needs of the patient. Institutions are also developing committees to address palliative care, pain management, and other end-of-life care issues.

The Florida Living Will Statute (F.S. 765) allows a competent adult the right to refuse life-sustaining medical care and permits a competent adult to designate in writing his/her wishes through advance directives, in the event he/she becomes incapacitated. This law was amended in 1999 to address financial, regulatory, pain management, and palliative care issues. The revisions to F.S. 765 also added a new category to the criteria for the implementation of an advance directive to withdraw or withhold life-prolonging procedures called the “end-stage condition.”



Criteria for the Withholding or Withdrawing of Life-Prolonging Procedures by Florida Law (F.S. 765)

• End-Stage Condition: An irreversible condition, which has resulted in progressively severe and permanent deterioration and which, to a reasonable degree of medical probability, treatment of the condition would be ineffective.

• Terminal Condition: A condition from which there is no reasonable medical probability of recovery and which, without treatment, can be expected to cause death.

• Persistent Vegetative State: A permanent and irreversible condition of unconsciousness in which there is: a) the absence of voluntary action or cognitive behavior of any kind; b) and inability to communicate or interact purposefully with the environment.

In cooperation with the Department of Elder Affairs, the 2004 Florida Legislature is in the process of making additional changes to end-of-life care in Florida by examining current reimbursement methodologies, identifying and setting standards, and recommending incentives for appropriate end-of-life care. Additionally, the Florida Commission on Aging with Dignity is addressing public education regarding decision-making at end-of-life. In collaboration with the American Bar Association Commission on Legal Problems of the Elderly, they developed a legal document called the “Five Wishes” to assist individuals to create advance directives. The Five Wishes document is valid in 35 states and in the District of Columbia. The Florida Commission on Aging with Dignity now has a second publication called “Next Steps,” which is intended to be a companion guide to Five Wishes. It gives information regarding steps that individuals need to take in order to ensure that their advance directives will be honored.

A lesson should be learned from the nationally publicized story of Terri Schiavo, the young woman in Florida, who has been in a persistent vegetative state for more than 12 years due to severe brain-damage. A Special Session of the 2004 Florida Legislature had to meet to deal with this critical dilemma. Much of her family's anguish could have been avoided with an advance directive like a living will that specified her end-of-life wishes.

Healthcare Provider Education Documented deficiencies in the education of nurses and care given by nurses during the terminal stages of life resulted in the award of a $2.22 million grant by the Robert Wood Johnson Foundation to “support a comprehensive, national education program to improve end-of-life care by nurses.” To address deficiencies in healthcare professionals’ knowledge

Five Wishes lets your family and doctors know: 1. Which person you want to make health care

decisions for you when you can't make them. 2. The kind of medical treatment you want or don't

want. 3. How comfortable you want to be. 4. How you want people to treat you. 5. What you want your loved ones to know.

Used with permission

Source: http://www.agingwithdignity.org/5wishes.html (October, 18, 2004 )



regarding end-of-life issues, the Board of the Florida Department of Health (DOH) issued a directive stating that as of 2000, end-of-life issues must be included in curricula for healthcare programs. Additionally, the DOH determined that for most licensed healthcare providers, continuing education credits earned for end-of-life care could be submitted in place of HIV/AIDS courses for alternate re-licensure periods.

Many medical organizations and foundations have also developed initiatives to improve education of healthcare providers, quality of care of the dying patient, and the public’s perceptions of the provider’s concern for palliative care. The City of Hope Medical Center (California) for example, has sponsored the End-of-Life Nursing Education Consortium Curriculum (ELNEC) to train healthcare professionals in end-of-life care. Organizations such as churches, senior centers and volunteer organizations are conducting information sessions on decision making and advance planning for their seniors.

Healthcare providers should be knowledgeable regarding resources for end-of-life care in order to share them with terminal patients and their families. For example, there are numerous reputable, accessible web sites such as the Last Acts Organization that is dedicated to issues in end-of-life care. Others include the American Association of Retired Persons, the National Institute on Aging, American Cancer Society, the National Hospice and Palliative Care, the Hospice Foundation of America, and the American Medical Association. These organizations are also reachable by telephone and provide information concerning end-of-life issues in print.

The web site http://www.krtdirect.com/dying/about.htm has information on a free 15-part course “Finding Our Way: Living with Dying in America,” distributed by Knight Ridder/Tribune. The main objective of this course is to educate Americans on the practical aspects of end-of-life matters. In addition, an increasing number of authors of medical and nursing textbooks include guidelines for healthcare professionals in performing various aspects of end-of-life care.

Caring For Professionals Who Provide End-of-Life Care Caring for dying patients and their families present unique personal and professional challenges for healthcare professionals. In providing this care, healthcare professionals confront their own mortality through that of the patients’. Similarly, they also confront the inevitability of their own personal losses through the losses experienced by patients’ families and significant others. Being there for patients and their families as they confront death requires courage. Sustaining courage over time requires personal awareness and attention to self-care.

Personal awareness involves insight into how sensations, emotions, past experiences, thoughts, beliefs, attitudes, values and interaction with patients, families and other professionals, influence one’s life experience. Three components of personal awareness are awareness of self, others, and environment. Effective self-awareness requires a specific set of psychological and social skills that involve reflection upon one’s own thoughts and feelings, awareness of others’ thoughts and feelings, and the practice of acceptance and curiosity.

Self-care for healthcare professionals includes balancing personal and professional life by identifying goals for home and work along with realistic ways to achieve these goals.



Second, self-care involves leading a healthy lifestyle with proper diet, exercise, adequate sleep, recreation, and having meaningful social and spiritual support. Finally, knowing and recognizing signs and symptoms of burnout and working to prevent burnout in the healthcare provider are crucial steps in self-care and surviving stressful situations, such as in the provision of end-of-life care.

Conclusion There is a disparity between the actual and the desired state of end-of-life care in this country. However, gradual awareness of these inadequacies is resulting in the provision of resources to improve end-of-life care for the general public. The needs of terminal patients are great, but appropriate care can be given if healthcare providers understand these needs and act accordingly to fulfill them.



Education & Development Answer Sheet Complete all lines and PLEASE PRINT

Orlando Regional Healthcare Employee: ( ) No ( ) Yes Employee # Date

Last Name First Name If employee, Department Name & Number

Street Address City State Zip

( ) RN ( ) LPN ( ) Rad Tech ( ) Other License #

Darken the correct circle, you may use pencil or black ink A B C D E A B C D E 1. O O O O O 26. O O O O O 2. O O O O O 27. O O O O O 3. O O O O O 28. O O O O O 4. O O O O O 29. O O O O O 5. O O O O O 30. O O O O O 6. O O O O O 31. O O O O O 7. O O O O O 32. O O O O O 8. O O O O O 33. O O O O O 9. O O O O O 34. O O O O O 10. O O O O O 35. O O O O O 11. O O O O O 36. O O O O O 12. O O O O O 37. O O O O O 13. O O O O O 38. O O O O O 14. O O O O O 39. O O O O O 15. O O O O O 40. O O O O O 16. O O O O O 41. O O O O O 17. O O O O O 42. O O O O O 18. O O O O O 43. O O O O O 19. O O O O O 44. O O O O O 20. O O O O O 45. O O O O O 21. O O O O O 46. O O O O O 22. O O O O O 47. O O O O O 23. O O O O O 48. O O O O O 24. O O O O O 49. O O O O O 25. O O O O O 50. O O O O O Please also complete the self-learning packet evaluation at the end of the packet. In order to receive 2.0 contact hours, you must: • Submit the answer sheet and payment ($5.00 for Orlando Regional Healthcare employees / $10.00 for

non-employees) to: Orlando Regional Healthcare Education & Development, MP 14 1414 Kuhl Ave. Orlando, FL 32806

• Achieve an 84% on the posttest. (You will be notified if you do not pass and will be asked to retake the posttest.)



Posttest Directions: Do NOT write on this test. Complete this test using the bubble sheet provided.

Select True (a) or False (b) for the True/False questions

1. One common end-of-life need identified by terminal patients is: A. Compassionate nursing care B. To die in the hospital C. To have physicians make all healthcare decisions D. Presence of family at the bedside

2. Current federal and state laws regarding end-of-life care:

A. Are complex, ambiguous and subject to interpretation, resulting in legal battles between families and healthcare providers

B. Give clear directions that enable patients, family/significant others and healthcare providers to make care decisions

C. Are similar in all U.S. states, so knowledge of Florida’s end-of-life laws may be generalized to those of any other state

D. Have been enacted in very few states of the union

3. Which law allows a competent patient without a DNR order to refuse intubation, even though he may die as a result? A. Patient Self-Determination Act B. Health Insurance Portability and Accountability Act C. Natural Death Act D. Oregon’s Death with Dignity Act

4. The Florida legislation that was amended in 1999 to address financial and regulatory

issues as well as pain management, palliative care and advance directives is: A. Removal of Life Support Systems Act B. Patient Self-Discrimination Act C. Florida Living Will Statute D. Five Wishes Act

5. Cultural barriers:

A. Are not hindrances to quality end-of-life care in this country since the U.S. is a multicultural society

B. Will not exist if healthcare providers are competent and compassionate C. Are the major contributing factors in suicides among terminally ill patients D. May prevent patients from seeking medical care when needed



6. Terminally ill patients in a specified culture share the same basic end-of-life care needs. A. True B. False

7. Administering pain medications which may cause nausea and vomiting exemplifies the

following ethical principle: A. Maleficence B. Nonmaleficence C. Double effect D. Professional misconduct

8. The act of someone else other than the patient deliberately administering a lethal dose

of injection to a terminally ill patient to end his/her life is: A. Active euthanasia B. Beneficence C. Willful negligence D. Paternalism

9. Mr. Aboukir, who is in the terminal stages of HIV/AIDS, wants to utilize hospice

services and die at home. His sister has consented to move into Mr. Aboukir’s house to care for him. He confided to the nurse that he told his sister that he had cancer. He did not think his sister would take care of him if he told her the truth. The nurse should: A. Say nothing. It is the doctor’s responsibility to deal with issues such as

informing families about the patient’s medical diagnosis B. Encourage the patient to tell his sister the truth so that she would obtain enough

information to adequately care for him C. Call the Risk Management department to take appropriate legal action D. Inform Mr. Aboukir’s sister of her brother’s HIV/AIDS status so that she can

adequately protect herself

10. On admission, Mrs. Canasta submitted a living will to be placed on her chart. You notice that it was signed by Mrs. Canasta and that it also had the signatures of her husband and her eldest son as the witnesses. You would: A. Place the living will on Mrs. Canasta’s chart as it was signed appropriately B. Inform Mrs. Canasta that the living will must be notarized to make it valid C. Inform Mrs. Canasta that one witness must be someone other than a blood

relative or spouse D. Inform Mrs. Canasta that one witness must be someone other than a blood

relative or spouse and that the document must be notarized



11. On the way to the visitor’s lounge, Mrs. Green’s daughter (her only living relative) asked you to call her when the doctor arrived so that she could sign her mother’s consent for surgery. She explained that Mrs. Green could not sign for herself as she was incompetent. You know this means: A. Mrs. Green could not sign the consent because she could not read. As Mrs.

Green’s only next of kin, her daughter had to sign for her. B. The attending physician had determined that Mrs. Green was incompetent. He

had discussed the situation with the daughter over the phone and had suggested that she sign the consent for her mother.

C. Mrs. Green’s had a mental problem that affected her judgment, making her unable to sign.

D. The court had declared Mrs. Green incompetent. As the attorney-in-fact, her daughter may sign the consent after the physician documents that Mrs. Green lacks capacity.

12. Mr. Hill, a 47-year-old widower who was in a motor vehicle accident is now in a coma

and on life support. He has no advance directives and has not designated a healthcare surrogate. Based on law and after discussion with the family, which of the following persons would a hospital in Florida most likely appoint as Mr. Hill’s healthcare proxy? Mr. Hill’s: A. Seventeen-year-old son B. Girlfriend C. Father D. Older brother

13. Mr. Buck, a 94-year-old patient with newly diagnosed lymphoma, was admitted to the

hospital last night with nausea and vomiting x 2 days and dehydration. When you came on shift, you were told that Mr. Buck was c/o nausea. As you entered his room with his medication, Mr. Buck stated, “I’m not taking any more medications. That’s what is making me sick. I just want to die now; leave me alone.” As his nurse you would: A. Explain to Mr. Buck that the medication was to decrease his nausea B. Call his family to take him home since he does not want to be helped C. Notify the doctor that the patient was refusing his medication D. Ask the patient if he had signed a DNR form

14. The purpose of the Clinical Practice Guidelines for Quality Palliative Care is to provide

direction for the development and structure of new and existing palliative care services and to promoting consistently high quality care for terminal patients. A. True B. False



15. Palliative care involves: A. Aggressive treatment of pain and symptoms associated with terminal illnesses B. A non-aggressive regimen of care provided for terminal patients C. An aggressive course of therapy aimed at health restoration and life preservation D. A special type of treatment for terminal patients that must be ordered by an

attending physician

16. Curative care is best defined as: A. A non-aggressive regimen of care provided for terminal patients B. An aggressive course of therapy aimed at health restoration and life preservation C. A special type of treatment for terminal patients that must be ordered by an

attending physician D. An aggressive treatment of pain and symptoms associated with terminal

illnesses

17. What is the best method for assessing physical pain intensity? A. If the patient is competent, watch his expression. You can tell if he is in pain. B. Be aware of the patient’s diagnosis and obtain accurate vital signs while he is

complaining of pain. C. Ask a reliable family member to tell you how much pain the patient is feeling. D. Have the patient indicate his pain level based on a scale.

18. Pain and symptom management for the terminally ill:

A. Basically involves keeping the patient sedated so he will not suffer B. Consists only of the use of pharmacological agents ordered by the physician C. May include non-medical treatments such as music therapy and poetry readings D. Should be discontinued when the dying patient becomes unconscious

19. Many elderly terminal patients in the U.S.

A. Are retirees with excellent healthcare coverage B. Do not have to worry about financial matters because Hospice services will care

for them C. Have their healthcare costs covered by Medicare/Medicaid D. Face severe financial difficulties and worry about their families’ financial states

20. Initiatives to improve end-of-life care include:

A. Requirements that judges make the decisions on whether or not the patient should be a DNR

B. Legalizing physician assisted suicide in all 50 states C. Allowing nurses to assist physicians who perform euthanasia on competent

requesting adults D. Educating healthcare providers and the public regarding end-of-life issues



Appendixes

Appendix 1 - JCAHO Standards Regarding End of Life Care RI.1 The hospital addresses ethical issues in providing patient care.

RI.1.1 The patient's right to treatment or service is respected and supported.

RI.1.2 Patients are involved in all aspects of their care. RI.1.2.1 Informed consent is obtained. RI.1.2.2 Patients and, when appropriate, their families are informed about

the outcomes of care, including unanticipated outcomes. RI.1.2.3 The family participates in care decisions. RI.1.2.4 Patients are involved in resolving dilemmas about care decisions. RI.1.2.5 The hospital addresses advance directives RI.1.2.6 The hospital addresses withholding resuscitative services. RI.1.2.7 The hospital addresses forgoing or withdrawing life-sustaining

treatment. RI.1.2.8 The hospital addresses care at the end of life. RI.1.2.9 Patients have the right to appropriate assessment and

management of pain.

RI.1.3 The hospital demonstrates respect for the following patient needs: RI.1.3.1 confidentiality; RI.1.3.2 privacy; RI.1.3.3 security; RI.1.3.4 resolution of complaints;

RI.1.3.5 pastoral care and other spiritual services; and RI.1.3.6 communication.

RI.1.4 The hospital operates according to a code of ethical behavior.

PE.1 Each patient's physical, psychological, and social status are assessed. Intent of PE.1 For dying patients, an assessment is made of the social, spiritual, and cultural variables that influence the perceptions and expressions of grief by the individual, family members, or significant other(s).

PE.1.4 Pain is assessed in all patients.

Used with permission:

Source: CAMH http://swift/regulatory/camh/html/pe.html#ge4 and http://swift/regulatory/camh/html/ri.html



Appendix 2 - Resources

Core Principles for End of Life Care

Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine

Christine K. Cassel and Kathleen M. Foley, December 1999

Retrieved October 18, 2004 from http://www.milbank.org/endoflife/#core

Other Online Resources

http://www.ortl.org/end_of_life/index.html

http://ethics.acusd.edu/Applied/Euthanasia/

http://www.ortl.org/end_of_life/end_of_life_care_or_law.htm

http://www.growthhouse.org/death.html

http://www.globalideasbank.org/creend/CRE-3.HTML

http://www.missoulian.com/specials/dying/palliative.html

www.hpna.org

http://www.hpna.org/pdf/NCP_OnePager.pdf

www.aahpm.org

www.capc.org

www.lastactspartnership.org

www.nhpco.org

http://www.nhpco.org/files/public/NHF_brochure_Pink_Communicating.pdf

http://elderaffairs.state.fl.us/doea/english/LMD/EOL/EOL.pdf

http://www.flsenate.gov/statutes/index.cfm?App_mode=Display_Statute&URL=Ch0765/ch0765.htm



References American Nurses Association. Position Statement on Active Euthanasia and Assisted Suicide.

Retrieved October 18, 2004, from http://www.nursingworld.org/readroom/position/ethics/eteuth.htm

American Nurses Association. (2003). Position Statement: Pain Management and Control of Distressing Symptoms in Dying Patients. Retrieved October 18, 2004, from http://www.nursingworld.org/readroom/position/ethics/etpain.pdf

Bednash, G., Rhome, A., Weed, F., Ferrell, B., Grant, M., & Virani, R. (2000). ELNEC: End-of-life Nursing Education Consortium Curriculum. Duarte, CA: City of Hope Medical Center.

Berry, P. H., & Dahl, J. L. (2000). The new JCAHO pain standards: Implications for pain management nurses. Pain Management Nursing, 1, 3-12.

Blackhall, L. J., Frank, G., Murphy, S. T., Michel, V. Palmer, J. M., & Azen, S. P., (1999). Ethnicity and attitudes towards life sustaining technology. Soc. Sci. Med.; 48, 1779-1789.

Braun, K. L., Pietsch, J. H., & Blanchette, P. L. (2000). Cultural Issues in End-of-Life Decision Making. Thousand Oaks, CA: Sage Publications.

Byock, I. (1997). Dying well: Peace and possibilities at the end of life. New York, NY: Berkley Publishing.

Clinical Practice Guidelines for Quality Palliative Care, Retrieved October 18, 2004 from www.nationalconcensusproject.org

Crawley, L. M., Marshall, P. A., Lo, B., & Koenig, B. A. (2002). Strategies for culturally effective end-of-life care. Annals of Internal Medicine, 136(9), 673-679

Colón, M. & Lyke, J. (2003). Comparison of hospice use and demographics among European Americans, African Americans, and Latinos. American Journal of Hospice & Palliative Medicine 20(3): 182-190.

Dempsey, S. K. (2001, January 22). Pain assessment. Advance for Nurses, 2(2), 10-12.

Differences between hospice and palliative care programs. The Center to Advance Palliative Care (CAPC). Retrieved October 18, 2004 from http://64.85.16.230/educate/content/elements/differencebetweenhpc.html

Farber, S. J., Egnew, T. R., & Herman-Bertsch, J. L. (1999). Issues in end of life care: Family practice faculty perceptions. Journal of Family Practice, 48(7), 525-530.

Ferrell, B. & Coyle, N. (2001). Textbook of Palliative Nursing. New York: Oxford University Press.

Field, M. & Cassel, C. (1997). Approaching Death: Improving Care at the End-of-life. Washington, DC: Naval Academy Press.

Five Wishes. Retrieved October 18, 2004, from http://www.agingwithdignity.org/5wishes.html

The Florida Department of Health. (2002). HIV prevalence estimates. Retrieved October 18, 2004, from http://www.doh.state.fl.us/disease_ctrl/aids/trends/prevalence/previndex.html



Florida Hospital Association. End of life care: Legislation and regulations. Retrieved October 18, 2004, from http://www.fha.org/KeyIssue.html?PGID=46

Florida Hospital Association. Florida demographics (2003). Retrieved October 18, 2004, from http://www.fha.org/fldemographics.html

Florida Statutes, Chapter 765. Retrieved October 18, 2004, from http://www.leg.state.fl.us

Foley, K. (2001). Pain and symptom control in the dying ICU patient (Chapter 10). In J. Curtis & G. Rubenfeld (eds.), Managing Death in the ICU. New York: Oxford University Press:

Franks, P. J., Salisbury, C., Bosanquet, N., Wilkinson, E. K., Kite, S., Naysmith, A., & Higginson, I. J. (2000). The level of need for palliative care: A systematic review of the literature. Palliative Medicine, (14)2, 93-104.

Gauthier, D. M. & Swigart, V. A. (2003). The contextual nature of decision making near the end of life: Hospice patients’ perspectives. American Journal of Hospice & Palliative Medicine 20(2): 121-128.

Hermann, C. (2001). Spiritual needs of dying patients: a qualitative study. Oncology Nursing Forum. 28(1), 67-72.

Highfield, M.E.F. (2000). Providing spiritual care to patients with cancer. Clinical Journal of Oncology Nursing, 4(3), 115-120.

Improving end-of-life care. (2000). The American Nurse. 6, 8.

Kagawa-Singer, M. & Blackhall, L. J. (2001). Negotiating cross-cultural issues at the end of life: "You got to go where he lives". JAMA, 286(23), 2993-3001.

Kessler. D. (2000). The Needs of the Dying: a guide for bringing hope, comfort, and love to life’s final chapter. New York, NY: Quill

Krach, C. A. & Velkoff, V. A. (1999). Centenarians in the United States. U.S. Census Bureau. Retrieved October 18, 2004, from http://www.census.gov/prod/99pubs/p23-199.pdf

Kuebler, K. K., Berry, P. H., & Heidrich, D. E. (2002). End of life care: Clinical practice guidelines. Philadelphia, PA: W. B. Saunders Co.

Kuebler, K., English, N., & Heidrich, D. (2001). Delirium, confusion, agitation, and restlessness. (Chapter 20). In B. Ferrell & N. Coyle, (eds.). Textbook of Palliative Nursing. New York, N. Y: Oxford University Press, pp. 290-308.

The Last Acts Coalition: Care and Caring at the End of Life. Retrieved October 18, 2004 from http://www.ampainsoc.org/pub/bulletin/may98/lastacts.htm

Finding Our Way: Living with Dying in America. Retrieved October 18, 2004 from http://www.scu.edu/fow

Lynn, J., Schuster, J. L., & Kabcenell, A. (2000). Improving care for the end of life: A sourcebook for health care managers and clinicians. New York, NY: Oxford University Press.

Lynn, J. (2001). Serving patients who may die soon and their families: The role of hospice and other services. The Journal of the American Medical Association, 285(7), 925-932.

Mantel, D. L. (2001). Pain assessment. Advance for Nurses, 2(2), 17, 38.



McPhee, S. J., & Markowitz, A. J. (2001). Psychological considerations, growth, and transcendence at the end of life: The art of the possible. JAMA, 286(23), 3002.

Mitty, E. L. (2001). Ethnicity and end of life decision-making. Reflections on Nursing Leadership 27(1), 28 –32.

Morasso, G., Capelli, M., Viterbori, P., Di Leo, S., Alberisio, A., Constantini, M., & Fiore, M. (1999). Psychological and symptom distress in terminal cancer patients with met and unmet needs. Journal of Pain and Symptom Management, 17(6), 402-9.

The Oregon death with dignity act: A guidebook for health care providers (2000) Retrieved October 18, 2004, from http://www.ohsu.edu/ethics/guide.htm

Reese, D., Melton, E., & Ciaravino, K (2004). Programmatic barriers to providing culturally competent end-of-life care. American Journal of Hospice & Palliative Medicine 21(5),

Rogers, S. K. (2001). What nurses can do about end-of-life care in the 21st century. Advance for Nurses, 2(3), 17, 38.

Schiff, L. & Boyd, L (2000). Survey: More education needed for end-of-life care. RN, 63(9), 14.

Shannon, S. (2001). Helping families cope with death in the ICU (pp. 165-182). In J. Curtis & G. Rubenfeld, (eds.). Managing Death in the ICU. New York: Oxford University Press.

Stienhauser, K. E., Christakis, N.A, Clipp, E. C., McNeilly, M., McIntyre, L., & Tulsky, J. A. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA, 284(19), 2476-82.

Tolle, S., Tilden, V., Rosenfeld, A. & Hickman, S. (2000). Family reports of barriers to optimal care of the dying. Nursing Research, 49(6), 310-317.

U.S. Department of Health and Human Services: Centers for Disease Control. (2000). Leading causes of death: U.S. Retrieved October 18, 2004, from http://www.cdc.gov/nchs/fastats/lcod.htm

Weissman, D. E., Ambuel, B. & Hallne beck, J. (2000). Improving End of Life Care. A resource guide for physicians education. 3rd ed. Medical College of Wisconsin, Inc.

World Health Organization. (1990). Cancer Pain Relief and Palliative Care. Technical Report, Series 804. Geneva: The Organization.


Self-Learning Packet Evaluation Name of Packet: Date:

Employee Non-Employee

Your position? RN LPN Respiratory Radiology Lab Social Work Rehab Clin Tech

Other: If RN/LPN, which specialty area?

Med/Surg Adult Critical Care OR/Surgery ED Peds Peds Critical Care OB/GYN L&D

Neonatal Behavioral Health Cardiology Oncology Other:

Please take a few moments to answer the following questions by marking the appropriate boxes.

Strongly Agree

☺

Agree

Neutral

Disagree

Strongly Disagree

1) The content provided was beneficial. 2) The packet met its stated objectives. 3) The packet was easy to read. 4) The posttest reflected the content of the packet. 5) The course was: Mandatory Optional Please answer the following questions: How long did this packet take you to complete? ___________________________________________ What have you learned that you will apply in your work? ____________________________________ What was the best part of the packet? ____________________________________________________ What would you suggest be done differently? _____________________________________________

__________________________________________________________________________________ Additional Comments: ______________________________________________________________________________________________________________ _______________________________________________________ Thank you for your input.

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2 licensed practical nurses 3 radiologic techno

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