Palliative Medicine Part 1

One unanticipated result of the advances in health care during the past century has been the emergence of chronic illness as the leading cause of death [see Table 1]. At the same time, the enhanced ability to significantly extend life for patients with chronic diseases has blurred the boundary between curable illnesses and illnesses that inevitably result in death. As a result, over the course of the 20th century, Western society increasingly attributed near-miraculous powers to medical science—and increasingly avoided the subject of death. Many patients and physicians came to regard the prolongation of life and the cure of disease as the fundamental and exclusive goals of modern medicine. Viewed from this perspective, death is a medical failure.

Recent decades, however, have seen a growing recognition that this view is unrealistic and potentially harmful. This recognition has supported the emergence of the field of palliative care. Unlike curative care, which focuses on the disease process, palliative care focuses on the patient, striving to minimize the patient’s burden and maximize the patient’s quality of life. A distinguishing feature of palliative care is that it openly acknowledges dying as part of living and does not consider death an enemy.1

This topic describes the general concepts of palliative care, reviews the clinical skills needed to provide competent palliative care to patients who are chronically ill or near the end of life, and discusses some of the challenging legal and ethical issues often encountered in palliative and terminal care.


History and Rationale

Palliative medicine was first recognized as a medical specialty in Great Britain in 1987. This discipline grew out of the hospice care movement, a special interdisciplinary system of comprehensive care for the dying and for their families.1 Over time, the palliative care model has been extended. It now applies not only to patients who are clearly at the end of life but also to those with chronic illnesses that, although not imminently fatal,cause significant impairment in function, quality of life, and independence.

Table 1 Leading Causes of Death in the United States: 200046

Rank

Condition

Percent of Total Deaths

1

Heart disease

29.6

2

Malignant neoplasm

23.0

3

Cerebrovascular diseases

7.0

4

Chronic lower respiratory tract diseases

5.1

5

Accidents

4.1

6

Diabetes mellitus

2.9

7

Influenza and pneumonia

2.7

Note: These conditions account for approximately 75% of all deaths.

Palliative medicine for patients with serious illness thus should no longer be seen as the alternative to traditional life-prolonging care. Instead, it should be viewed as part of an integrated approach to medical care. Palliative care is not characterized by less care or by withdrawal of care. On the contrary, palliative care may involve intensive and highly sophisticated medical interventions, albeit ones intended to relieve suffering or improve quality of life.

Settings for Delivery of Palliative Care

Palliative care may be delivered in a variety of settings, including a hospital, nursing home, hospice, or private home. In some cases, the level of care required will dictate the choice of setting. For the most part, however, palliative care depends more on the attitude of the clinician than on the setting.

Hospitals

Increasing numbers of hospital-based palliative care programs have been developed in recent years to meet the needs of people who are chronically and critically ill and eventually die in hospitals.2 A national Center to Advance Palliative Care has been created to provide technical support and resources for hospitals that want to establish such programs [see Sidebar Palliative Care Information and Resources on the Internet].

Hospice

Hospice is one way to deliver palliative care [see Table 2]. Hospice care traditionally has been characterized as low tech, high touch. Hospice provides home nursing, support for the family, spiritual counseling, pain treatment, medications for the illness that prompted the referral, medical care, and some inpa-tient care. The National Hospice and Palliative Care Organization (NHPCO) estimates that in the United States, hospices admitted 775,000 patients in 2001 (compared with approximately 340,000 persons in 1994) and that, in 2000, one in four persons who died of all causes were receiving hospice care at the time of death.3

Palliative care and hospice share similar philosophies, and both are delivered by an interdisciplinary team of health care professionals. Palliative care differs from hospice care in that palliative care can be provided at any time during an illness and in a variety of settings, may be combined with curative treatments, and is independent of the third-party payer. In the United States, hospice is paid through the Medicare Hospice Benefit. Medicare requires that recipients spend 80% of hospice care days at home, which means that to qualify for hospice, the patient must have a home and have caregivers (e.g., family members) capable of providing care. In addition, primarily for financial reasons, Medicare requires that recipients have an estimated survival of 6 months or less and that their care be focused on comfort rather than cure.4 These eligibility rules were created at a time when hospice programs principally served patients with cancer or AIDS, in which the trajectory of dying is relatively predictable; in 1994, for example, 80% of hospice patients had cancer, and the average patient enrolled about 1 month before death.5 Because hospice increasingly serves pa-tients with chronic conditions in which prognostication remains inaccurate, these eligibility rules now limit access to care.6,7 Asking patients and families to choose between curative care and palliative care is difficult for all concerned and is inconsistent with the current model of care, which views palliative care on a continuum with life-prolonging therapy [see Figure 1].8 Also, this either/or situation contributes to late referrals and underutilization of hospice services.9

Palliative Care Information and Resources on the Internet

American Academy of Hospice and Palliative Medicine (AAHPM)


http://www.aahpm.org

Organization for physicians dedicated to the advancement of hospice/palliative medicine.

Americans for Better Care of the Dying (ABCD) http://www.abcd-caring.org

Nonprofit public charity dedicated to social, professional, and policy reform aimed to improve the care system for patients with serious illness and their families.

Center to Advance Palliative Care (CAPC)

http://www.capcmssm.org

For hospitals and health systems interested in developing palliative care programs.

Death and Dying: MEDLINEplus

http://www.nlm.nih.gov/medlineplus/deathanddying.html

Links from the U.S. National Library of Medicine and the National Institutes of Health.

Education for Physicians on End-of-life Care (EPEC)

http://www.epec.net

Provides a core curriculum for physicians on the basic knowledge and skills needed to appropriately care for dying patients.

End of Life/Palliative Education Resource Center (EPERC)

http://www.eperc.mcw.edu

Identifies and disseminates information on end-of-life care education and training materials, publications, conferences, and other resources.

End-of-life Nursing Education Consortium (ELNEC) Project

http://www.aacn.nche.edu/elnec

Provides a comprehensive national education program to develop a core of expert nursing educators and to coordinate national nursing efforts in end-of-life care.

Growth House

http://www.growthhouse.org

Gateway to international resources for life-threatening illness and end-of-life care; intended to improve the quality of care for dying people through public education and global professional collaboration; includes links and search engine on reviewed resources for end-of-life care.

National Hospice and Palliative Care Organization (NHPCO)

http://www.nhpco.org

Nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. Offers information in Spanish and English on local hospice and palliative care programs across the country. Toll-free telephone number: 800-658-8898.

Project on Death in America (PDIA)

http://www.soros.org/death

Strives to increase understanding and transform the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy.

Palliative care can be provided in nursing homes, and increasing numbers of nursing homes strive to do so. Policies governing the coordination of palliative care in nursing homes vary according to reimbursement venues and availability of trained staff. Many nursing homes coordinate palliative care through local hospices, taking advantage of the skilled hospice nurses and other health care professionals.

Demographics of Death and Dying in the United States

Most people in the United States can now expect to die in old age. Of the over 2 million deaths per year in the United States, 73% occur in persons 65 years of age or older: 49% in persons 65 to 84 years of age, and 24% in persons 85 years of age or older. In 2001, the estimated life expectancy at birth reached 77.2 years, compared with less than 50 years in 1900.10

The median age of death in the United States is 77 years of age; of persons who survive to 65 years of age, median age at death is 84 years for women and 80 years for men.11 Persons 65 years of age or older constitute an increasingly large number and proportion of the United States population, and those persons 85 years of age or older constitute the most rapidly growing segment. In 1999, persons 65 years of age or older accounted for about 13% of the population; this proportion is projected to rise to 20% by the year 2030.12

The elderly population is extremely heterogeneous, varying in socioeconomic status, educational level, and cultural and ethnic background. This diversity is likely to increase in the coming years. For example, African Americans 65 years of age and older numbered 2.5 million in 1990 (constituting 8% of the population of persons older than 65 years), and their number is expected to more than triple, to 8.4 million (or 10.5% of that population) by 2030. Similarly, there were approximately 1.1 million Hispanic elderly persons in 1990 (3.5% of the population of persons older than 65 years), but by 2030 this number will skyrocket to 12.5 million (15.6% of that group).12

Compared with the current elderly population, elderly baby boomers will be far more knowledgeable about health care and far more demanding of health care providers. Their expectations are likely to lead them to challenge the health care profession to deliver high quality end-of-life care tailored to patients’ individual need and to provide that care in a culturally sensitive manner.

Although most deaths occur in the elderly, people can become critically ill at any point in their lives and can die at any age. In fact, the persons whose cases were the basis for establishing important precedents for ethical and legal decisions related to death and dying were young adults: 26-year-old Nancy Cruzan,13 whose case involved the issue of artificial feeding of patients in a persistent vegetative state; and 21-year-old Karen Ann Quinlan,14 whose case involved the withdrawal of artificial ventilation from patients in a persistent vegetative state.

Leading causes and settings of death

The three leading causes of death in adults in the United States in 2001 were heart disease, malignant neoplasm, and stroke.10 Chronic obstructive pulmonary disease (COPD), pneumonia, and accidents each accounted for less than 10% of all deaths. Most adult deaths in the United States occur in hospitals (56%), followed sequentially by deaths occurring at home (21%), in nursing homes (19%), and in other settings (4%).15 These statistics vary substantially according to geographic site, primarily because of regional variations in hospital, hospice, and nursing home bed supply.

Table 2 Comparison of Hospice and Palliative Care

Feature

Hospice

Palliative Care

Initiation

Prognosis of < 6 mo survival

Any time during illness

Clinical focus

Comfort care; no curative care

May involve both comfort care and curative care

Third-party payment

Medicare hospice benefit

Independent of payer

Personnel

Volunteers integral and required

Health care professionals

Setting

> 90% provided at home; inpatient hospice for acute deterioration, very short life expectancy (e.g., < 2 wk), or high symptom burden

Anywhere (hospital, home, nursing home)

Do not resuscitate (DNR) orders

Not required

Not required

Prognosis and Palliative Care

Traditionally, palliative care has been narrowly conceptualized as an alternative to standard life-prolonging therapy and has been provided to patients whose disease no longer responds to curative treatment. Although this model may be appropriate for patients dying of metastatic cancer, in which prognosis is relatively predictable and response to treatment is typically well defined, fewer than a quarter of persons in the United States die of cancer; the majority die of chronic diseases (e.g., heart disease) in which the prognosis is often uncertain, functional decline is nonlinear, and life-prolonging therapies coexist with or are identical to therapies directed at palliation and comfort (e.g., diuresis for fluid overload in heart failure).

One of the barriers to initiating palliative care is the uncertainty of predicting prognosis in these complex, chronic medical illnesses. For example, timing of death in heart failure is far less predictable than in many other fatal disorders. A patient dying of colon cancer usually has a long period of functional stability, then several months of progressive functional decline and weight loss just before death. In contrast, most heart failure patients experience a lengthy decline in daily function, with periodic bouts of severe symptoms and disability and multiple hospital admissions for exacerbation and for adjustment of therapy. Death may occur during a severe exacerbation but often occurs suddenly and relatively unpredictably from cardiac arrhythmia [see Figure 2]. In the SUPPORT project (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments),16 heart failure patients were given surprisingly long prognoses even up to the day before death.

 (a) Formerly, curative care and palliative care were viewed as mutually exclusive; when death became inevitable, curative care was abandoned and palliative care begun. This model of care is now outdated, because prognosis is so difficult to determine. (b) The current model views palliative care on a continuum with life-prolonging therapy, with palliative care assuming increasing importance as the patient's illness progresses and curative options are exhausted. Also, many chronic and life-threatening illnesses have no cures; the goals of treatment are to contain the illness and maintain an acceptable level of function and quality of life.

Figure 1 (a) Formerly, curative care and palliative care were viewed as mutually exclusive; when death became inevitable, curative care was abandoned and palliative care begun. This model of care is now outdated, because prognosis is so difficult to determine. (b) The current model views palliative care on a continuum with life-prolonging therapy, with palliative care assuming increasing importance as the patient’s illness progresses and curative options are exhausted. Also, many chronic and life-threatening illnesses have no cures; the goals of treatment are to contain the illness and maintain an acceptable level of function and quality of life.

Prognosis is relatively predictable in metastatic cancer; these patients typically have a long period of functional stability, then several months of progressive functional decline and weight loss just before death. In contrast, prognosis can be difficult to predict in diseases such as chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD), and Alzheimer disease; these patients typically experience a lengthy decline in daily function, with periodic bouts of severe symptoms and disability and multiple hospital admissions for exacerbation and for adjustment of therapy. Death may occur during a severe exacerbation, but—especially in CHF—often occurs suddenly and relatively unpredictably from cardiac arrhythmia.

Figure 2 Prognosis is relatively predictable in metastatic cancer; these patients typically have a long period of functional stability, then several months of progressive functional decline and weight loss just before death. In contrast, prognosis can be difficult to predict in diseases such as chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD), and Alzheimer disease; these patients typically experience a lengthy decline in daily function, with periodic bouts of severe symptoms and disability and multiple hospital admissions for exacerbation and for adjustment of therapy. Death may occur during a severe exacerbation, but—especially in CHF—often occurs suddenly and relatively unpredictably from cardiac arrhythmia.

The median prognosis on the day before death was a 50% chance of living 2 months.17 Dementia is another condition that often progresses over years rather than months.

To help clinicians assess prognosis in various nonneoplastic conditions, the NHPCO has compiled guidelines describing factors associated with poor prognosis; these guidelines can promote discussion about preferences for care and advance care planning.18 However, SUPPORT data indicate that for seriously ill, hospitalized patients with advanced COPD, heart failure, or end-stage liver disease, recommended clinical-prediction criteria cannot reliably identify those patients whose survival prognosis is 6 months or less.19 Because it is not possible to consistently and accurately predict the timing of death, palliative care interventions should be incorporated early in a patient’s course of illness, even in the face of substantial uncertainty about prognosis. As disease progresses, the goals of care should change accordingly, with the balance shifting from curative to palliative.

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