Palliative Care and Hospice

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PALLIATIVE CARE AND HOSPICE

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The terms palliative care and hospice are frequently used interchangeably to describe an approach to the care of individuals who are likely to die in the relatively near future from serious, incurable disease, for whom the principal focus of care is quality of life and support for the patient's family. The terms gained currency in the last third of the twentieth century as a result of significant changes in the leading causes of death in the developed countries of the industrialized world. In these countries prior to 1900, most people died relatively quickly, usually from acute, infectious diseases. They typically died at home, attended by family and friends. Because little in the way of medical technology was available to prevent or delay death, the costs of care were low, and the dying person and her caregivers could emphasize the inter-personal and spiritual aspects of dying.

By contrast, at the beginning of the twenty-first century most people in the developed world die from chronic, degenerative diseases such as cancer, cardiovascular disease, lung disease, and degenerative neurological disease. Death usually follows a prolonged period of progressive loss of function and numerous distressing symptoms, of which pain and shortness of breath are the most feared by patients, along with fear of the unknown. Because considerable medical technology now exists that can postpone death, costs are often high and most people die in hospitals or nursing homes, attended by strangers. For patients who die at home, the financial, physical, and emotional burdens of caregiving fall heavily on isolated nuclear families, and predominantly on women.

The Early Days of the Hospice Movement

The "hospice movement," as it is popularly known, is generally agreed to have started in 1967 with the opening of St. Christopher's Hospice in London under the charismatic leadership of Dr. Cicely Saunders. Hospices were a feature of the Middle Ages in Europe, usually run by religious orders, and offered safety, healing, and rest to weary and often wounded travelers. It was therefore an obvious name to give to institutions founded in France, Ireland, and England around the turn of the nineteenth century to care for the dying. What made St. Christopher's and those that followed different was Saunders's insistence on scientific rigor and professional education and training.

Few people were likely to return home from these pioneer hospices, but they would get skilled relief of their pain and suffering, whatever its nature or origin, in a sensitively nourished environment of love, safety, and peace for them and their relatives. That better care of the dying was needed was attested to by many comments of the dying themselves, grieving relatives who looked back in horror and sadness at what patients had had to suffer, and by an increasing number of papers published in reputable medical journals detailing this suffering. At what most must have felt the loneliest time of their life, the dying described themselves as having no attention paid to their suffering and getting no answers to their questions. They not only experienced a spectrum of physical suffering, but endured fear, depression, loneliness, and a sense of being undervalued by society. They often felt deserted by their doctors, whom they found difficult to trust when so rarely were they told the true nature of their mortal illness and what lay ahead. The dying either lived with relatives who, hoping to protect them, conspired with the doctors to keep them in ignorance, or in hospitals where the focus of attention was sophisticated investigations and aggressive treatments designed to cure.

Palliative Care

It was soon recognized that the word hospice, though widely understood and accepted by the English-speaking world, would never be universally acceptable because it had a different meaning in French and Spanish. Balfour Mount, who established a specialized unit at the Royal Victoria Hospital in Montreal in 1974 based on the principles he had learned at St. Christopher's, coined the term palliative care to circumvent the language problem. Because it was already in medical parlance, the healthcare professions accepted this term. Today physicians working in this field describe themselves as palliative medicine physicians and nurses as palliative care nurses, while the services where they work (the original hospices) are called specialist palliative care services.

The acceptance and adoption of palliative care by other healthcare professionals has not always been straightforward, however. Many claimed they were already providing it, in spite of the many reports of uncontrolled suffering. A few suspected it was euthanasia under another name. Some were convinced it was not based on well-proven therapeutic regimens but was simply complementary or alternative medicine applied to the dying. Others questioned why it seemed to focus on the care of people with malignant disease when patients suffering end-stage cardiac, neurological, and respiratory disease, or AIDS, had similar and often unmet needs (Addington-Hall).

Definition and Scope

It was easy to define hospice care when it focused on the final days of life. It soon became apparent, however, that better care was needed long before this terminal phase. Hospital-based teams were created to provide care for patients in the hospital units where they were still receiving treatments intended to cure or slow the progress of their underlying disease. Things could also be improved when people were being cared for at home, where most wanted to remain as long as possible, though, contrary to what has always been said, not necessarily to die there (Hinton; Ward). A range of services was developed to assist primary physicians caring for people at home, including home visits by nurses and other professionals and day-care units for patients who could be brought into a center for clinical assessment and creative occupational therapy.

Palliative care was no longer synonymous with "care of the dying." Yet, as the field has developed, it has struggled to define itself in a way that captures its broader scope— reflecting its appropriateness for patients earlier in their disease process, who are not imminently dying—without resorting to euphemisms chosen to disguise the fact that the care is for people who, sooner rather than later, will die of their illness. The most commonly used definition is that devised by the World Health Organization. It emphasizes that the principles of palliation—the relief of physical, psychosocial, and spiritual distress, and respect for the needs of relatives—are appropriate from the time of diagnosis. In an attempt to produce a more succinct definition, called for when palliative medicine was recognized as a medical specialty in the United Kingdom in 1987, palliative care was defined as the study and care of patients with active, progressive, far-advanced disease and a limited life expectancy, for whom the focus of care is the quality of life.

This definition does not limit palliative care to people with malignant disease, nor does it state a prognosis in terms of months or weeks. It is worded so as not to be confused with care of the elderly, care of the chronically ill, or care of the incurable (which would embrace many of the conditions seen daily by physicians). Unfortunately, it omits mention of relatives, or the fact that palliative care can be provided only by an interdisciplinary team. Its strength lies in its unequivocal focus on quality of life rather than on cure or prolongation of life, the declared objectives of much of modern medical care.

J. Andrew Billings, who in 1998 reviewed many of the competing definitions, concluded that the following definition achieves the best balance of completeness and concision:

Palliative care is comprehensive, interdisciplinary care, focusing primarily on promoting quality of life for patients living with a terminal illness and for their families. Key elements for helping the patient and family live as well as possible in the face of life-threatening illness include assuring physical comfort, psychosocial and spiritual support, and provision of coordinated services across various sites of care. (p. 80)

Two further statements, endorsed by the government of the United Kingdom, have been found challenging and helpful:

It is the right of every person who needs it to receive high quality palliative care, irrespective of his or her diagnosis.
It is the responsibility of every clinician to provide high quality palliative care. (Doyle, p. 6)

In applying these principles in the complex, highly differentiated world of the health professions, it is helpful to note that palliative care can be provided at three levels: principles, techniques, and specialist care.

Palliative care principles are integral to all good clinical care, and they are applicable at every stage of a patient's care, whatever the nature of the illness. Every doctor and nurse should be applying these principles, even when they are still defining the nature and cause of an illness or its symptoms.

Palliative techniques are usually the responsibility of professionals such as surgeons and interventional radiologists, who, for example, create ostomies, insert stents, and provide palliative radiation. None of these procedures is intended to cure, but each can bring about relief in suffering.

Specialist palliative care is provided by those who have undergone specialist training as stipulated by their accrediting professional body. In such countries and regions as the United Kingdom, Australasia, and Hong Kong, specialist palliative care units are those where all senior doctors and nurses are accredited specialists and where members of professions allied to medicine (physiotherapists, occupational therapists, clinical pharmacists, clinical psychologists, and music, art, and stoma therapists) have all had additional training pertinent to palliative care. Such services are usually affiliated with local medical and nursing colleges.

Quality, Value, and Meaning of Life

As palliative care continues to develop, it is being recognized that with the drugs and techniques currently available, and the increasing skills to use them, it is relatively easy to achieve physical comfort, but that even when that has been achieved a person may still feel frightened, lonely, unwanted, or undervalued. Those working in the field now realize that, beyond the management of physical symptoms, palliative care is primarily concerned with three things.

First is quality of life. Many quality-of-life assessment tools specific to palliative care are now available to healthcare professionals (Clinch, Dudgeon, and Schipper; Higginson). Each attempts to measure quality as perceived by the patient or relative and not by the attending professionals. Robust research is now confirming what has long been suspected, that patients not given the information they seek experience more physical and psychosocial suffering and describe a lower quality of life than those kept informed according to their wishes. To many people's surprise, this has proven to be the case not only in the West but also in diverse cultures and among peoples of various faiths in the Middle and Far East.

The second concern is value of life. As people approach death they increasingly wonder whether their lives have been of any value to others and to the community, and whether they still have any value as persons when they are incapacitated by a fatal illness, dependent on others, and, as they are often reminded, expensive to care for. Surveys in the United States have shown that patients' loss of independence and fears of being a burden to others are more often the primary motivations in requesting assisted suicide or euthanasia than is physical pain (Emanuel et al.; Sullivan, Hedberg, and Fleming). Respecting the individual patient's assessment of the value of her life, while remaining vigilant for the effects of depression or social isolation, presents one of the most profound clinical and ethical challenges in palliative care. Yet, the skills for eliciting and responding to this form of suffering are seldom addressed in medical and nursing schools.

The third concern is meaning of life. When, and only when, their physical suffering has been relieved and their families cared for, do dying people begin to ask existential questions. Though a diminishing proportion of people in the West now claim to have a meaningful religious faith, more than 75 percent of dying people want to discuss the meaning of life, suffering, and death, and they may be disappointed if no one is interested in helping them. Once again, in the absence of some training in the humanities, doctors and nurses in the increasingly secularized Western society find themselves ill-equipped to help with this issue.

The Development of Palliative Care Worldwide

From the handful in operation in 1967, there are now more than 6,200 palliative care programs in over 100 countries. In its birthplace, the United Kingdom, palliative care services are readily and freely accessible to all. The National Health Service runs one-fifth of these services, and 25 percent of the operating costs of the others are met by government, the balance being met from voluntary funding of more than US$450 million annually. A typical palliative care in-patient unit in the United Kingdom, with 10 to 100 beds, admits annually twenty to twenty-five patients per bed, where each will stay for an average of eleven to fourteen days. The portion of patients able to return home varies between 40 and 60 percent, higher if there is an effective community palliative care service and a day unit. Seldom do more than 15 percent of patients who have conditions other than cancer receive palliative care in the United Kingdom, a considerably smaller percentage than in the United States.

Though palliative care services are being developed in many countries, most are modeled on those of the United Kingdom and the United States, rather than being designed to meet local needs and cultures. Palliative care is still not available to the 75 percent of the world's population, for whom curative treatment of life-threatening disease is either unavailable or inaccessible. There are still only a relative handful of medical schools worldwide that include palliative care in the curriculum, and fewer still where a specialist teaches it. Even when it is mentioned in undergraduate medical courses it is rarely included in the training of subspecialists who—in the West—provide the bulk of the care to critically ill patients. Only in those countries where there are doctors working full time in the field is palliative care rapidly gaining credibility and acceptance.

Palliative Care in the United States

The first hospice program in the United States opened in Connecticut in 1974. Most early programs relied heavily for financial support on private, local philanthropy and grants. Beginning in 1983, patients over the age of sixty-five could elect to receive a "hospice benefit" under the Medicare program. A patient certified by his physician as "terminally ill" (defined as having a life expectancy of six months or less) may waive access to Medicare coverage of curative treatments for the terminal illness, in return for a package of services aimed at symptom control and improved quality of life. These services would otherwise not be covered or would be provided in an uncoordinated manner. The Medicare hospice benefit (payable as a per diem reimbursement to Medicare-certified hospice providers) includes nursing care in the home (up to sixteen to twenty hours per week, with temporary twenty-four-hour care available under limited "crisis" circumstances); medical appliances and drugs; homemakers, home health aides, and volunteers for personal and respite care; physician services; short-term hospitalization; physical and occupational therapy; psychological and spiritual support; social services; and bereavement counseling (Center for Medicare Education).

Medicare requires hospices to conform to several procedural and staffing requirements in order to receive federal funds. Among the most significant requirements are that the hospice must have a core, interdisciplinary team made up of at least a physician, a registered nurse, a social worker, and a chaplain or other counselor; that patients must have an identified primary-care provider in the home (usually a family member or someone else who is available on a twenty-four-hour-per-day basis); and that no more than 20 percent of the total aggregate number of days of care provided by the hospice may be in inpatient settings.

Since Medicare funding became available, the number of hospice programs in the United States has increased dramatically. From 1982 to 2000, the estimated number of providers grew from 500 to 3,100. The number of patients served increased from approximately 1,000 to approximately 700,000 between 1975 and 2000. Cancer patients made up 57 percent of hospice admissions in the United States in 2000, followed by patients with heart disease (10%), dementia (6%), lung disease (6%), end-stage kidney disease (3%), and end-stage liver disease (2%) (NHPCO).

In contrast to community- and home-based hospice care, hospital-based palliative care programs are a much more recent development in the United States. As recently as 1998, only 15 percent of U.S. hospitals reported having any services devoted to end-of-life care (Pan et al.). In a survey of 5,810 member hospitals by the American Hospital Association in 2000, 13.8 percent of the 4,856 respondents reported having a palliative medicine service, while 22.7 percent reported a hospital-based hospice program, and 42 percent reported a pain management service.

Inpatient palliative care units on the British or Canadian model are still relatively rare in the United States. Hospital-based palliative care teams primarily provide consultation for symptom management, patient and family counseling, and conversations designed to determine appropriate goals of care (Pan et al.). Financial pressures on acute-care hospitals in the United States usually dictate the swift discharge (to home or nursing facility) of any patient for whom acute hospital interventions are no longer indicated. This restricts the ability of the hospital palliative care team to assist in the course of the patient's dying. The role of the team at that point is most often to assure as smooth a transfer as possible to another setting, which may or may not include ongoing palliative care by specialist professionals.

Unlike in Great Britain, where there are now more specialist palliative medicine physicians than oncologists, palliative medicine has not been recognized as a medical subspecialty in the United States. Beginning in 1996, however, the American Board of Hospice and Palliative Medicine began to administer a certifying examination for physicians who wished to be known for special competence in the field. A separate organization, the Hospice and Palliative Nurses Association, administers a certifying examination for nurses and began a certification program for palliative care nursing assistants in 2002.

Ethical and Policy Issues in Palliative Care and Hospice

Many of the ethical issues that arise in the care of the dying are similar to issues that arise in many other areas of healthcare, such as truthfulness and confidentiality, decisionmaking authority in the professional–patient relationship, the appropriate use and allocation of technology and other healthcare resources, the conduct of research, and the locus of ethical responsibility when care is provided by a team (Randall and Downie). Other issues are more commonly associated with the care of the terminally ill, though not absent from other arenas, such as decision making for patients who have lost the capacity to make or communicate their own decisions, withholding or withdrawing life-sustaining treatment, and hastening death by assisting in suicide or through active euthanasia.

The latter issue tends to receive the greatest attention from bioethics scholars and policymakers. Moral distinctions between various actions or choices that can hasten the time of death can be exquisitely fine (Quill, Lo, and Brock). Yet, for all the persistent and intense debate surrounding the issues of suicide and euthanasia (Battin, Rhodes, and Silvers), "terminal sedation" and the doctrine of double effect (Fohr), or the differences, if any, between "allowing to die" and "causing to die" (Brock; Clouser), another set of issues are no less vexing and affect far more people. These are the questions of access to and quality of palliative care services.

The dimensions of the problem of access to palliative care are suggested by the following data from the United States. According to the National Hospice and Palliative Care Organization (NHPCO), of the 2.4 million people who died in the United States in 2000, approximately one-fourth died while receiving hospice care. Approximately half died in hospitals, 25 percent died in a nursing facility, and another 25 percent died at home; the percentage of home deaths has remained relatively stable for several decades, despite Gallup polls that consistently indicate that over 85 percent of Americans would prefer to die at home.

It is true that dying at home is an imperfect marker for the adequacy of palliative care. In fact, in most developed countries, the better the palliative care provision in hospitals and the community, the fewer the number of people who die at home, with home deaths now approaching 20 percent in most European countries. A more telling statistic is that of patients who received hospice care in 2000, one-third died within seven days of admission, despite the six months of benefits allowed under the Medicare hospice program. The median length of stay for hospice patients in the United States has been dropping steadily for several years; the NHPCO reports that it was only twenty-five days in 2000. Although the reasons for these trends are still being investigated, the following are likely to be significant contributing factors: the difficulty of making precise estimates of life expectancy—as is required for Medicare hospice eligibility— especially for diseases other than cancer (Teno et al.); patients' reluctance to accept the label "terminally ill"; the requirement that patients forgo Medicare reimbursement for treatments with curative intent; and many physicians' identification of a hospice referral with "giving up."

In the United States, hospice and palliative care have not yet fully overcome the legacy of opposition to mainstream scientific medicine that characterized their beginnings in the 1970s. The growth of rigorous scientific research in palliative care, the publication of textbooks, and the growth of a cadre of palliative medicine specialists with a base in academic medical centers should ameliorate this problem in the years to come. For the present, however, hospice and palliative care remain near the margins of the American healthcare system. In the realm of education, a 1997 survey of fourth-year medical students and third-year medical residents found that both groups rated their preparation in end-of-life care worse than for many other common clinical tasks (Block and Sullivan), and analyses of leading medical textbooks reveal that, on average, end-of-life issues are addressed on only 1.6 percent of the pages (Block). In the realm of financing of services or research, the desire to forestall or prevent death overwhelms support for hospice and palliative care. Precise data are difficult to obtain, but one indicator of the relative lack of support for palliative as opposed to curative medicine is presented in a 1997 report from the Institute of Medicine of the National Academy of Sciences. The report cites a personal communication from an official from the National Institutes of Health (NIH), who estimated that in fiscal year 1996, NIH spent about $70 million on pain research out of an overall budget of $12 billion.

From the policy perspective, the greatest challenge facing palliative care in the United States at the beginning of the twenty-first century is to fashion a system of financing and delivery of care that is flexible enough to provide services as they are needed along the complete continuum from diagnosis of life-threatening illness through the (often unpredictable) period of disability and functional decline, into the last phases of active dying and family bereavement (Lynn). The system would, at a minimum, encourage the open acknowledgment by physicians and patients of the possibility of dying, advance planning to anticipate complications and likely needs for care, meticulous attention to physical symptoms and to psychological and spiritual suffering, support for the family, and the creation of settings for care that respect the personal and spiritual significance of death and loss.

Worldwide, the challenge of access to competent palliative care is no less daunting. Among the principal causes for alarm are the number of people living with HIV/AIDS— estimated by the United Nations at 40 million at the end of 2001—and the large projected increase in deaths from tobacco products, which the World Health Organization predicts could triple by 2020 from the 2000 level of 3.5 million (Brundtland). In both cases, almost all of the increase is expected to occur in the developing world. Global efforts to teach the principles of modern palliative care, and to incorporate them in healthcare systems, are lagging far behind the manifest need, despite curative technologies and medications remaining unavailable or unaffordable for most of the world's poor.

Where palliative care is available, there is the challenge of providing care in ways that respect different cultural and religious views. Most professionals who enter the field do so because they want to help people die well. But what does it mean to "die well"? What is a "good death"? There is no single, universal answer to either of these questions. That the modern hospice movement was first promulgated largely by Christians may have hindered its development among people of other faiths for whom the "hospice philosophy" may have been hard to separate from theological commitments that they did not share. Even with respect to elements of a "good death" on which most people could probably agree— freedom from pain, resolution of personal affairs, the supportive presence of loved ones—there is room for considerable personal variation. People differ in their willingness to face the reality of their imminent death; in their desire to talk about their feelings to friends, family, or caregivers; in how they balance pain relief against alertness; and in their willingness to tolerate increasing weakness, dependency, and uncertainty rather than trying to control the timing and manner of their death through an act of suicide or euthanasia. This variability requires health professionals to approach patients and families as individuals, in an effort to provide care that is consistent both with patient and family values and with their own conscience.

derek doyle

david barnard

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INTERNET RESOURCE

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Encyclopedia of Bioethics