Hospice

Hospice programs have the mission of supporting a meaningful quality of life for terminally ill people and their families. What exactly is a hospice program? How and why did these programs begin? What kind of assistance do they provide? How can terminally ill people and their families make informed decisions about seeking the hospice option? Questions such as these have been raised with increasing frequency in recent years as both the general public and health care professionals have demonstrated a willingness to discuss the once-taboo topic of dying and death (Feifel 1959; Becker 1973).

Origins and Development of the Hospice Approach

Modern hospice programs have ancient roots (Phipps 1988; Stoddard 1978). Greek temples of healing offered a soothing environment, encouragement, and a spectrum of services that included bathing, massage, music, and therapeutic serpents. The belief that the whole person should be supported by a team of skilled and compassionate people would later become a core principle of the hospice movement. This promising beginning was overwhelmed by "progress" as the Roman Empire gained ascendance. The rulers established hospitals whose bureaucratic organization anticipated the modern health care system. The emphasis was on repairing wounded soldiers so they could fight again—the mutilated and the dying were far down the priority list.

Compassionate care for the sick and the dying continued to be provided in several monasteries. An exceptional woman of fourth century Rome observed their practices. Sorrowing over the death of her husband, Fabiola devoted herself to providing comfort to other people in their last days. Fabiola's personal example and her powers of persuasion persuaded others to take up this cause as well. The hospice movement would go through periods of both advance and decline through the centuries, but Fabiola's example had set the process in motion: the living could and should comfort the dying.

By the fifth century hospice was a part of medieval society. The word itself derives from the Latin hospitium, which also has given us host and hostess. In those years the hospice was a dwelling that functioned under the auspices of a religious order. Pilgrims were afforded the opportunity to rest, replenish their energies, and receive encouragement before they resumed their long, wearying, and dangerous journeys to sacred destinations. Some travelers were literally at death's doorstep. They were welcomed across the threshold, given bedding, food, and compassionate companionship by keepers of the faith. In the great age of pilgrimage, life itself became viewed as a journey (Cole 1992) with hospice serving as a final way station. In and around the Holy Land, crusader knights also operated hospice facilities and were known on occasion to provide care for people of other faiths as well.

Many hospice programs fell victim to social upheavals throughout the ensuing centuries. It proved difficult and often impossible to maintain a charitable service in the midst of warfare, religious conflicts, and economic and ecological disasters. The subsequent rise of technology and mass society was also inhospitable to hospice. Nevertheless, throughout these dark years there were still some small houses in which a few caregivers provided comfort for the sick and dying. Work houses and other large institutions provided shelter for the homeless and destitute, but closed their doors to "incurables" (Gilmore 1989).

Modern hospice care made its appearance in 1879 with the establishment of Our Lady's Hospice in Dublin, operated by the Irish Sisters of Charity. The mission was specifically to care of dying people and support for their families. Relief of pain was a high priority, and the staff quickly became experts in this art. Medical practice had become more ambitious as part of nineteenth burgeoning industrial, commercial, and scientific development. "Incurables" were increasingly regarded as people who stubbornly failed to respond to medical interventions and were therefore of little interest. Our Lady's Hospice would bequeath to the international hospice movement its emphasis on symptom relief and welcoming attitude toward family involvement. Just as significantly, the dying person was not regarded as a throwaway or a failed machine but as a unique and valuable individual. Several other institutions followed the lead of Our Lady's Hospice, but compassionate and effective care for the dying remained an endeavor well beyond the fringe of mainstream medicine.

The situation started to change dramatically in 1963 with the establishment of St. Christopher's Hospice. Dame Cicely Saunders, a nurse and a physician, had been inspired by the courage and insight of David Tasma, a man she had cared for in his last year of life (Saunders 1997). Under Saunder's innovative and charismatic leadership, St. Christopher's became the model for hospice care throughout the world. Saunders and her colleagues faced the challenge not only of developing improved methods of symptom control, but also of persuading the medical establishment that people could and should be given effective assistance in the end-phase of life.

The news traveled fast throughout the United Kingdom and to the United States and Canada where many people had become distressed by the perceived impersonality of medical care in general and the abandonment of the terminally ill person in particular. "Death with dignity" had become the rallying cry. The first North American hospice program was established in New Haven, Connecticut in 1974. Hospice made rapid strides, although not without resistance, conflicts, and misunderstandings that often arise when tradition is challenged. Studies soon confirmed that the hospice alternative did produce benefits such as pain relief and the ability to spend more time at home rather than in hospital (Mor, Greer, and Kastenbaum 1984). Convinced that this approach also reduced the costs of end-of-life services, the federal government enacted legislation enabling terminally ill people to select either hospice or traditional medical care. This program has been a qualified success. Provisions of the federal program are often criticized (e.g., Beresford and Connor 1999; Hoefler 1997), but more than 3,000 hospices serve nearly half a million patients a year.

The term hospice was problematic in bilingual Canada. Physician Balfour Mount (1997) introduced the term palliative care in the mid-1970s. This term not only eased the acceptance of hospice services in Canada, but has also gained widespread usage throughout the world. Palliative care in Canada is offered primarily as an in-hospital service. In the United States many programs emphasize home care with access, however, to inhospital units when necessary. To think of hospice as a place is often an oversimplification. Hospice is an approach to terminal care that can be carried out in a variety of settings.

Hospice programs are now flourishing in many nations (Saunders and Kastenbaum 1997). Each society has had to find its own way to integrate hospice care into its family and religious values as well as its political, economic, and environmental circumstances. Nations as diverse as China, Colombia, Japan, Jordan, and Saudi Arabia have learned how to introduce palliative care into cultures that differ in many ways from the United Kingdom and North America. This is often a difficult process as in Colombia, for example, where the government and medical establishment strongly resisted prescribing morphine for dying people even though the sale of illegal drugs is rampant there. One major obstacle in some nations has been the deeply rooted attitude that death should not be discussed, even if this means systematically trying to deceive the dying person that all is well. Even in these circumstances, however, people have come to recognize the value of open communication and the possibility of significant pain relief (e.g., Smith and Zhu 1997).

The Hospice Option

Most patients served by hospice have either a form of cancer that is not responding to treatment or a progressive neurological condition such as amyotropic lateral sclerosis (ALS, also known as Lou Gehrig's disease). Hospice has been proving itself more flexible, however, by adapting its programs to serve children, people with acquired immunodeficiency syndrome (AIDS), and, so far to a limited extent, people with end-stage dementia.

Hospice care is intended as an alternative, not a replacement for management of terminal illness within the mainstream medical system. Several factors are important in making the choice.Awareness of impending death. Eligibility for the Medicare Hospice Benefit requires medical certification that the patient has a life expectancy of six months or less. Just as significant, however, is the patient's own judgment and attitude. One might feel like fighting all the way, seeking additional treatment even though the odds seem against recovery or remission. Families also might refuse to accept the terminal prognosis and urge physicians to do everything, no matter how slim the chances. Occasionally a person judged to be terminally ill does recover. Unreadiness to acknowledge that the patient is nearing death can be based upon actual glints of hope that remain in the medical situation or anxious denial, to mention only the extremes. The decision to select the hospice alternative generally requires that the individual understands that his or her life is nearing its end. The individual might have this understanding and nevertheless decide to remain within the traditional medical care system, but hospice care is intended primarily for those who, in fact, are dying and who are cognizant of this fact.

Accurate knowledge of hospice care. There is still the lingering misconceptions that entering a palliative care program is an act of despair that consigns the person to a death-obsessed isolation. However, Balfour Mount (1997) speaks for many other palliative care physicians when he observes that "[a]ctually, effective symptom control and the presence of those who are there because they choose to care for the dying, frequently produces a liberation that enables the patients to focus on living and the quality of each day rather than on dying" (pp. 79–80).

Much that has been learned about effective symptom control has come from hospice care (Muir et al. 1999). The mistaken assumption that patients would be exposed to less competent medical and nursing care in hospice programs has kept some people from exploring this alternative. Furthermore, the development of palliative care was motivated in large part by the concern that the psychological, social, and spiritual needs of dying people were being neglected by mainstream medical practices. Hospice programs encourage continued interactions with family and friends and the support of the patient's own preferences and values.

There has also been some misunderstanding about the role of religion in hospice programs. As already noted, hospice programs from the early middle ages onward were usually offered under the auspices of a religious organization. St. Christopher's, the first center of the modern hospice movement, was also under Christian auspices and staffed primarily by nuns. Many—but not all— hospice programs today are associated with a particular religious faith. Does this mean that people who are not religious or belong to the "wrong" faith are not welcome in hospice programs or would be pressured to convert? Some terminally ill people have shied away from hospice programs because of this concern. In actuality, hospice programs have long been open to people regardless of their religious beliefs. David Tasma, the man who inspired Dame Cicely Saunder's work, was Jewish, and St. Christopher's set the example of providing compassionate care without attempting to impose their own faith. Studies have shown that most hospice staff and volunteers have a strong religious faith to sustain their efforts, but do not infringe on the patient's own beliefs (Schneider and Kastenbaum 1993).

Family communication and participation. Palliative care is intended as a cooperative endeavor characterized by open communication and mutual trust. In the ideal situation a skilled hospice team works with a close and caring family. A primary family caregiver is identified and provided with ongoing instruction and support by hospice experts. Other family members also participate in the care process in various ways and provide relief for the primary caregiver. Hospice experts make themselves available to answer questions and respond to problems as they emerge so that the family as well as the patient never feel abandoned, neglected, or misunderstood. When decision points arise there is consultation within the hospice team, within the family, and between both units. The patient participates in this process to the extent of his or her ability and inclination.

Unfortunately, situations often are less than ideal. The family might have other significant burdens and obligations that must continue to be managed. For example, the person theoretically in the best position to serve as primary family care-giver might be a spouse with physical disabilities of his or her own or a teenager struggling with issues that require intensive family support. The family might also be having difficulty even in talking about the situation and experiencing a pattern of withdrawal or confrontation with each other because of the tensions generated by the illness. Furthermore, the family may not have a physician who knows them well, or a physician who is knowledgeable about hospice and willing to make a referral. Whatever encourages open communication within the family and between family and human service professionals will help to make the wisest and most timely decision about the hospice alternative.

Availability, access, and appropriateness. Although palliative care programs are available throughout much of North America, some areas and some populations are underserved. Information can be obtained through state and county health departments, as well as from websites of such organizations as Hospice Foundation of America, Hospice Nurses Association, and the National Hospital and Palliative Care Organization. Coverage for hospice expenses is provided through Medicare. Four requirements have been established:

• The patient is eligible for Medicare Part A.
• The patient's physician and the hospice medical director certify that the patient has a terminal illness with a life expectancy of six months or less. (The hospice medical director can also serve as the patient's own physician, if circumstances warrant.)
• The patient signs a statement choosing hospice care instead of standard Medicare benefits for the terminal illness.
• Care is provided by a Medicare-approved hospice program.

Regulations are always subject to change, so it is useful to check with local health, social work, or Medicare agencies before applying. Availability and access can also depend on the nature and course of the illness (Stuart 1999). It is useful to inquire of local health agencies to learn whether or not hospice care is a practical alternative for a person with a particular condition.

Useful information about hospice care is provided by books for the general public such as those by Michael Appleton and Todd Henschell (1994) and M. Catherine Ray (1997). Health care professionals can learn of new developments in books such as Improving Care for the End of Life by Joanne Lynn, Janice Lynch Schuster, and Andrea Kabcenell (2000).

Hospice is often and accurately characterized as a grassroots movement. Society—including many health care professionals—decided it was time to become more than alert consumers: We could also be compassionate and effective care-givers to each other in the final phase of life. The future of hospice depends on many factors, but none greater than society's continued commitment to compassionate care.

See also:Acquired Immunodeficiency Syndrome (AIDS); Caregiving: Formal; Caregiving: Informal; Chronic Illness; Death and Dying; Decision Making; Dementia; Euthanasia; Grief, Loss, and Bereavement; Health and Families; Substitute Caregivers

Bibliography

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becker, e. (1973). the denial of death. new york: freepress.

beresford, l., and connor, s. r. (1999). "history of the national hospice organization." in the hospice heritage, ed. i. b. corless and z. foster. binghamton, ny: haworth.

cole, t. r. (1992). the journey of life. cambridge, uk:cambridge university press.

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hoefler, j. m. (1997). managing death. boulder, co:westview.

lynn, j.; schuster, j. l.; and kabcenell, a. (2000). improving care for the end of life: a sourcebook for health care managers and clinicians. new york: oxford university press.

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muir, j. c.; krammer, l. m.; camerson, j. r.; and von gunten, c. f. (1999). "symptom control in hospice—state of the art." in the hospice heritage, ed. i. b. corless and z. foster. binghamton, ny: haworth.

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smith, a., and zhu, d. z. (1997). "hospice development in china: 'like green bamboo shoots in the spring.'" in hospice care on the international scene, ed. c. saunders and r. kastenbaum. new york: springer.

stoddard, s. (1978). the hospice movement. new york:stein and day.

stuart, brad. (1999). "the nho medical guidelines fornon-cancer disease and local medical review policy: hospice access for patients with diseases other than cancer." in the hospice heritage, ed. i. b. corless and z. foster. binghamton, ny: haworth.

robert kastenbaum

hospice An institution specializing in care of the dying. The focus is on the management of pain and suffering (often by controlled medication) and in dealing with the prospect of death. In the United Kingdom the hospice movement developed in the 1980s. Most hospices are charitably funded, small-scale institutions, providing short-term care.

hos·pice / ˈhäspis/ • n. a home providing care for the sick, esp. the terminally ill. ∎ archaic a lodging for travelers, esp. one run by a religious order.

hospice (hos-pis) n. an institution that provides palliative care for people with terminal illnesses, specializing in symptom management and maintaining the psychological wellbeing of patients.

hospice XIX. — (O)F. — L. hospitium hospitality, lodging, f. hospes, hospit- HOST2.

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