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
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The term hospice refers to an approach to end-of-life care as well as to a type of facility for supportive care of terminally ill patients. Hospice programs provide palliative (care that relieves discomfort but does not improve the patient’s condition or cure the disease) patient-centered care, and other services. The goal of hospice care, whether delivered in the patient’s home or in a healthcare facility, is the provision of humane and compassionate medical, emotional, and spiritual care to the dying.
The English word “hospice” is derived from the Latin hospitium, which originally referred to the guesthouse of a monastery or convent. The first hospices date back to the Middle Ages, when members of religious orders frequently took in dying people and nursed them during their last illness. Other hospices were built along the routes to major pilgrimage shrines in medieval Europe, such as Rome, Compostela, and Canterbury. Pilgrims who died during their journey were cared for in these hospices. The modern hospice movement, however, may be said to have begun in the United Kingdom during the middle of the nineteenth century. In Dublin, the Roman Catholic Sisters of Charity undertook to provide a clean, supportive environment for care for the terminally ill. Their approach spread throughout England and as far as Asia, Australia, and
Africa; but until the early 1970s, it had not been accepted on any large scale in the United States.
Two physicians, Drs. Cicely Saunders and Elisabeth Kübler-Ross, are credited with introducing the hospice concept in the United States. Dame Saunders had originally trained as a nurse in England and afterward attended medical school. She founded St. Christopher’s Hospice just outside London in 1962. St. Christopher’s pioneered an interdisciplinary team approach to the care of the dying. This approach made great strides in pain management and symptom control. Dr. Saunders also developed the basic tenets of hospice philosophy, including:
- acceptance of death as the natural conclusion of life
- delivery of care by a highly trained, interdisciplinary team of health professionals who communicate among themselves regularly
- an emphasis on effective pain management and comprehensive home care services
- counseling for the patient and bereavement counseling for the family after the patient’s death
- ongoing research and education as essential features of hospice programs
During this same period, Dr. Kübler-Ross, a psychiatrist working in Illinois, published results from her groundbreaking studies of dying patients. Her books about the psychological stages of response to catastrophe and her lectures to health professionals helped to pave the way for the development and acceptance of hospice programs in the United States. The merit of the five stages of acceptance that Dr. Kübler-Ross outlines is that they are not limited to use in counseling the dying. Many patients who become disabled—especially those whose disability and physical impairment are
Analgesic— A type of medication given to relieve pain.
Hospice— An approach for providing compassionate, palliative care to terminally ill patients and counseling or assistance for their families. The term may also refer to a hospital unit or freestanding facility devoted to the care of terminally ill patients.
Palliative— A type of care that is intended to relieve pain and suffering, but not to cure.
Patient-controlled analgesia (PCA)— An approach to pain management that allows the patient to control the timing of intravenous doses of analgesic drugs.
sudden occurrences—go through the same stages of “grieving” for the loss of their previous physical health or quality of life. Paraplegics, quadriplegics, amputees, and patients with brain-stem injuries all progress through these same stages of acceptance—and they are not dying.
The first hospice programs in North America opened during the 1970s. In New Haven, Connecticut, the Yale University School of Medicine started a hospice home care program in 1974, adding inpatient facilities in 1979. In 1976, another hospice/home-care program, the Hospice of Marin, began in northern California. After a slow start, interest in and enthusiasm for the hospice concept grew. Health professionals as well as the public at large embraced the idea of death with dignity. The notion of quality care at the end of life combined with grief counseling and bereavement care (counseling and support for families and friends of dying persons) gained widespread acceptance. The hospice movement also benefited from government efforts to contain healthcare costs when reimbursement for inpatient hospital services was sharply reduced. Home-based hospice care is a cost-effective alternative to end-of-life care in a hospital or skilled nursing facility.
Acceptance by mainstream medical professionals
The hospice approach emphasizes caring instead of curing, and some health professionals initially found that this orientation was inconsistent with their previous education, experiences, beliefs, and traditions. Moreover, the involvement of complementary and alternative medicine practitioners was sometimes unsettling for health professionals unaccustomed to interacting with these persons. As a result of this early period of tension, the Academy of Hospice Physicians was established in 1988 to bring together doctors from a variety of specialties to awaken interest in hospice care among their colleagues and answer their concerns.
In the 1990s, the Academy changed its name to the American Academy of Hospice and Palliative Medicine (AAHPM). Its present purposes include the recognition of palliative care and the management of terminal illness as a distinctive medical discipline; the accreditation of training programs in hospice care; and the support of further research in the field. Most members of the AAHPM believe that more work needs to be done to encourage primary care practitioners and other physicians to refer patients to hospices. A study found that a significant minority of family practitioners and internists have problems interacting with hospices and hospice staff. In the late 1990s, however, the American Board of Medical Specialties (ABMS) recognized hospice and palliative medicine as a board-certified subspecialty. As of 2006, there were 2,883 physicians in the United States who were certified in this subspecialty.
Models of hospice care
HOSPITAL- AND HOME-BASED HOSPICE CARE. According to the National Hospice and Palliative Care Organization (NHPCO), there were 3,650 hospice programs operating in the United States in 2004, including Puerto Rico and Guam. In 1999, hospice programs in the United States cared for over 600,000 people, or 29% of those who died that year. By 2004, this number had increased to 1,060,000 patients.
There are several successful hospice models. As of 2007, over 95% of hospice care is delivered in patients’ homes, although the hospice programs that direct the care may be based in medical facilities. Home health agency programs care for patients at home, while hospital-based programs may devote a special wing, unit, or floor to hospice patients. Freestanding independent for-profit hospices devoted exclusively to care of the terminally ill also exist. Most hospice programs offer a combination of services, both inpatient and home-care programs, allowing patients and families to make use of either or both as needed.
One limitation of present hospice models is that most require physicians to estimate that the patient is not likely to live longer than six months. This requirement is related to criteria for Medicare eligibility, which has covered hospice care since 1982. Unfortunately, Medicare eligibility means that terminal patients with uncertain prognoses are often excluded from hospice care, as well as homeless and isolated patients. In addition, pressures to contain healthcare costs have continued to shorten the length of patients’ stays in hospices. The shortened time span in turn has made it more difficult for pastoral and psychological counselors to help patients and their families deal effectively with the complex issues of terminal illness.
Another present issue for hospice care in the United States and Western Europe is the need for greater understanding of concepts of death in Eastern cultures. For example, the Chinese notion of a “good death” differs from Western perspectives in several significant ways. As more people from non-Western cultures emigrate to North America and eventually seek hospice care, their concepts of death and dying will need to be incorporated in hospice care programs.
One challenge that confronts the hospice movement in the United States as of the early 2000s is the need to accommodate the rapid increase in the size of the elderly population (defined as people over the age of 65), which is expected to double between 2000 and 2030. The group of those over 85 is expected to increase from 4.2 million in 2000 to 8.9 million by 2030. In addition to the sheer number of elderly patients who will need hospice care, hospices must also care for people with a wider range of terminal conditions. In the 1970s, most hospice patients were people diagnosed with end-stage cancer. In 2002, however, people with cancer accounted for only 51% of hospice patients; the others were diagnosed with end-stage heart, kidney, or liver disorders; dementia; lung disease; or AIDS.
The demographics of hospice patients has also changed since the 1970s. In the early years of the hospice movement, almost all patients were middleclass Caucasians. In the early 2000s, 9.2% of hospice patients were African American, 4.3% were Hispanic, 8% were Asian, and 3.7% were multiracial. African Americans, however, appear to be more reluctant than members of other racial groups to consider hospice at the end of life even when their doctor strongly recommends it.
SPECIALIZED HOSPICES. The first hospices in the United States and the United Kingdom were established to meet the needs of adult patients; in the early 1970s, only four hospice programs in the United States accepted children. In 1977, a dying eight-year-old boy was denied admission to a hospice because of his age. This incident prompted the foundation of hospices just for children beginning in 1983, as well as the admission of children to other hospices. As of 2007, almost all hospices in the United States and Canada will accept children as patients.
In 1995, the National Prison Hospice Association (NPHA) was founded to meet the needs of prison inmates with terminal illness. Prisoners are much more resistant than most people to accept the fact that they are dying because death in prison feels like the ultimate defeat. Many are also very suspicious of medical care given within the prison, and are afraid to appear weak and vulnerable in the eyes of other inmates. A surprisingly high number refuse to take pain medications for this reason. The NPHA trains medical professionals and volunteers to understand the special needs of terminally ill prison inmates and their families.
Hospices in the United States and Canada accept patients from all religious backgrounds and faith traditions. Hospices that are related to a specific religion or spiritual tradition, however, often offer special facilities or programs to meet the needs of patients from that tradition. For example, there are Jewish hospices that observe the dietary regulations, Sabbath rituals, and other parts of Halakhah (Jewish religious law). The National Institute for Jewish Hospice (NIJH), founded in 1985, has accredited 40 hospice programs for Jewish patients as of 2007. Hospices related to the various branches of Christianity have a priest or pastor on call for prayer, administration of the sacraments, and similar Christian religious observances. The Zen Hospice Project, founded in 1987, sponsors programs reflecting the Buddhist tradition of compassionate service and maintains a 25-bed unit within the Laguna Honda Hospice in San Francisco, California.
Aspects of hospice care
GENERAL ENVIRONMENT. The goal of freestanding hospices and even hospital-based programs is the creation and maintenance of warm, comfortable, homelike environments. Rather than the direct overhead lights found in hospitals, these hospices use floor and table lamps along with natural light to convey a sense of brightness and uplift. Some hospices offer music or art programs and fill patient rooms with original artwork and fresh flowers.
PAIN MANAGEMENT AND PSYCHOSPIRITUAL SUPPORT. Along with acceptance of death as a natural part of the life cycle, health professionals who refer patients to or work in hospice programs must become especially well informed about pain management and symptom control. This knowledge is necessary because about 80% of hospice patients are dying of end-stage cancer. In traditional medical settings, pain medication is often administered when the patient requests it. Hospice care approaches pain control quite differently. By administering pain medication regularly, before it is needed, hospice caregivers hope to prevent pain from recurring. Since addiction and other long-term consequences of narcotic analgesics are not a concern for the terminally ill, hospice caregivers focus on relieving pain as completely and effectively as possible. Hospice patients often have patient-controlled analgesia (PCA) pumps that allow them to control their pain medication.
Symptom relief often requires more than simply using narcotic analgesia. Hospices consider the patient and family as the unit of care; family is broadly defined as embracing all persons who are close to the patient, not just blood relatives. Seeking to relieve physical, psychological, emotional, and spiritual discomfort, hospice teams rely on members of the clergy, pastoral counselors, social workers, psychiatrists, massage therapists, and trained volunteers to comfort patients and family members, in addition to the solace offered by nurses and physicians. A study published in early 2008 reported that patients and family members who received spiritual care while they were in a hospice setting thought that they received better overall care than those who did not. The single most important spiritual need mentioned by patients was individual devotional activities.
Since the patient and his or her family members are considered the unit of care, hospice programs continue to support families and loved ones after the patient’s death. Grief and bereavement counseling as well as support groups offer opportunities to express and resolve emotional concerns and share them with others.
COMPLEMENTARY AND ALTERNATIVE THERAPIES. Inaddition to mainstream medicine, many hospices offer patients and families the opportunity to use complementary and alternative approaches to control symptoms and improve well being. Acupuncture, music therapy, pet therapy, bodywork, massage therapy, aromatherapy, Reiki (energy healing), Native American ceremonies, herbal treatments, and other non-Western practices may be used to calm and soothe patients and their families. A study of complementary and alternative therapies within hospice programs found that patients who received these treatments reported greater overall satisfaction with hospice care than those who did not.
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Rebecca Frey, PhD
Hospice care was introduced in the United States in 1974 in response to the growing concern about the medicalization of dying. The first hospice in the United States was the Connecticut Hospice in New Haven. At that time, within health care, the emphasis was on curing illnesses and prolonging life, often at tremendous cost and with limited input from the seriously ill person. Patients typically viewed physicians as "experts" and deferred to their judgment.
The lay community, and some health care professionals, were growing increasingly concerned about their family members, friends, and neighbors dying in hospitals across the United States. There was general consensus that there had to be a better way to assure that persons at the end of life did not die alone and in pain.
Hospice emerged as an alternative to traditional health care, with the majority of care being provided by volunteers. The services provided by hospice programs were typically free, since health care insurers did not recognize hospice as part of the larger health care system. In order to be eligible for hospice, a patient's physician had to specify that the person was expected to live a year or less and that the focus of care would shift away from cure to palliation of symptoms. During the early years of the movement, it was emphasized that hospice was a concept, not a place.
Initially, the expectation was that, in order to receive hospice care, a terminally ill person would have at least one family member or friend who was willing to assume responsibility for his or her personal care. This criterion has evolved over time to provide greater flexibility for persons who are single, providing an option for such individuals to hire a caregiver or to move into a more structured environment when personal-care needs warrant additional assistance.
The Medicare benefit and other insurers
In 1984, hospice care was formally recognized as a benefit under the Medicare program. This was an important turning point for the hospice movement in the United States, demonstrating that hospice care had evolved from being largely a volunteer model to a recognized component of the health care delivery system, and therefore reimbursable. "In 1997, Medicare spent approximately $2 billion of its roughly $200 billion budget on hospice services provided to 382,989 patients who received over 19 million days of hospice care" (NHPCO, p. 1).
With the hospice Medicare benefit came increased regulation and additional restrictions on who was eligible for this benefit. For example, physicians had to give a seriously ill person a prognosis of six months or less to live for that person to be eligible. This admission criterion continues to be problematic, since determining a person's prognosis is not an exact science. In addition, patients (and their families) have to acknowledge that they are likely to die within the next six months. Consequently, patients are often referred to hospice very late in their illness trajectory and, therefore, do not receive the full benefit that the interdisciplinary hospice team is able to offer. In 1999, the average number of days that persons received hospice care prior to their death was forty-eight days; the median length of stay was twenty-nine days. Depending on the health care market, the length of stay in hospice can vary considerably. For example, in 1999 in Oregon the average length of stay was forty-two days and the median was sixteen days.
According to the National Hospice and Palliative Care Organization (NHPCO), Medicaid also covers the cost of hospice care in forty-three states and in the District of Columbia. Health care insurance plans cover "80 percent of employees in medium and large businesses. Eighty-two percent of managed care plans offer hospice benefits, along with most private insurance plans and the federal Civilian Health and Medical Program of the Uniformed Services program" (NHPCO, p. 1).
In 2001, NHPCO estimated that there were "3,139 operational or planned hospice programs in the U.S. . . .including the District of Columbia,Puerto Rico, and Guam" (NHPCO, p. 1). Just under half of the operational programs in 1999 were independent freestanding agencies (44 percent), followed by hospital-based (33 percent), and home health agency-based (17 percent). Figure 1 summarizes the growth in hospice programs since 1974.
In 1999, an estimated 700,000 patients were admitted to hospice and 600,000 died while receiving hospice care. Hospices provided care to 29 percent of Americans who died in 1999. "For those who were served by hospice care, 78 percent were able to die at home or under hospice care in a nursing home" (NHPCO, p. 1). Figure 2 summarizes the growth in hospice admissions from 1985 to 1999.
During the early years of the hospice movement, there were only a handful of inpatient hospice units in the United States. This was in contrast to the model of hospice inpatient care that emerged in England under the leadership of Dame Cicely Saunders, who opened Saint Christopher's Hospice in 1967. Individuals who are cared for in hospice inpatient units may be there because their family caregivers are not able to provide the needed care at home, or because they are experiencing uncontrolled symptoms and need a higher level of skilled care than can be provided in the home.
Trained volunteers, clergy, and health care providers from a variety of disciplines (e.g., medicine; nursing; occupational, physical, and speech therapy; social work) make up the hospice interdisciplinary team. This team develops, and continually updates, the care plan in collaboration with the patient's primary physician. Care plans include both terminally ill persons and their families. The majority of hospice care is provided in nonhospital settings by registered nurses and home health aides.
When a terminally ill person is being cared for in a home environment, hospice nurses make routine home visits to evaluate the effectiveness of the care plan, to recommend to the primary physician what medication changes are needed in order to better control symptoms, and to support the family caregiver. Home health aides provide personal care when the person's condition warrants it, or when the family caregiver is unable to assume this responsibility seven days a week. Other members of the interdisciplinary team, such as social workers, make home visits as appropriate.
"Considered to be the model of quality, compassionate care at the end of life, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes" (NHF, p. 1). The team pays particular attention to symptom management, including working aggressively to lessen pain at the end of life. Although the management of pain remains a challenge, in the early years of the hospice movement team members experienced considerable resistance because of fears of addiction and hastening death, as well as the general lack of knowledge about pharmacological and nonpharmacological interventions for pain.
Under the Medicare benefit, hospices have to include a volunteer component within their service package (e.g., persons to run errands, pick up medications, sit with the patient), which recognizes the important role that volunteers can play in supporting dying persons and their family caregivers. Medicare-certified hospices also provide bereavement support following a death, although the benefit does not include financial reimbursement for bereavement services.
The family as the unit of care is also an important component of hospice care. The interdisciplinary team works closely with family caregivers to assure that they have the knowledge and skills to care for their dying family members, and that they have access to the team's expertise twenty-four hours a day, seven days a week. As the dying person's disease progresses and care needs increase, the burden of care can, at times, be overwhelming to family caregivers. In some situations, it does become necessary to admit the dying person to an inpatient facility in order to better manage problematic symptoms and/or provide the family caregiver with relief from caregiving responsibilities.
The majority of hospice patients are elderly persons who have been diagnosed with cancer. NHPCO estimates that "hospices now care for over half of all Americans who die from cancer, and a growing number of patients with other chronic, life-threatening illness, such as end-stage heart and lung disease" (2001, p. 1). It is important to note that hospices provide care across the age continuum and that specialized hospice programs for children have been developing in more urban areas of the United States.
Hospice care in the United States has experienced tremendous growth since 1974, and it served as the forerunner to the health care community's current focus on palliative care. Although there isn't a universally accepted definition of palliative care, it is often described as "a way to meet the physical, mental, and spiritual needs of chronically ill and dying patients. . . (with) attention to relieving symptoms and meeting patient goals" (Lynn, Schuster, and Kabcenell, p. 134). In contrast to hospice care, where the patient must have a limited prognosis and a terminal illness, patients receiving palliative care must have a disease that is life limiting. This criterion broadens the number of patients who can benefit from palliative care. At the foundation of both hospice and palliative care is the effort to improve an ill person's quality of life through expert symptom management.
The challenges that hospices face are not unique to this area of health care. Americans' growing concern with the cost of health care means that hospice programs need to continually provide the highest quality end-of-life care at the lowest cost, whether the care is provided in the home, in another community-based setting, or within a hospice inpatient unit. In the future hospices will also be confronted with shortages of registered nurses as nurses and other health care providers from the baby-boom generation retire.
Finally, hospices must also continue to aggressively educate the public about the services that they provide. In 1999, the National Hospice Foundation conducted a public opinion survey of people age forty-five or older and found that:
- Only 24 percent of Americans put into writing how they want to be cared for at the end of life. A substantial proportion (19 percent) have not thought about end-of-life care at all, while 1 percent have thought about it, but not told anyone their wishes.
- Of those people who experienced the terminal illness of a loved one in the past year, only 22 percent used hospice services.
- Eighty percent of the respondents said that they did not know the meaning of the term hospice.
- People do know what they want from end-of-life care: 83 percent believe that making sure a patient's wishes are enforced is extremely important. Being able to choose among the types of available services was also extremely important, according to 82 percent of the respondents.
- People are willing to have an outside organization come into their homes and assist with care for a family member in the last stage of life. Fully 66 percent would welcome help from an outside organization, while 24 percent would prefer to take care of the family member themselves, with the help of family and friends. (NHPCO, p. 2).
Hospice care makes a difference in the lives of persons who are experiencing the end of their lives. With the graying of America, it is expected that the demand for hospice care will continue to increase. Hospice professionals and volunteers support persons with terminal illnesses (and their families) to optimize quality of life during this difficult transition. It is essential that referrals for hospice care are made in a timely manner in order to maximize the benefits of hospice care both prior to, and after, the death of a family member.
Jane Marie Kirschling
See also Caregiving, Informal; Home Care and Home Services; Medicalization of Aging; Pain Management; Palliative Care.
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Lattanzi-Licht, M.; Miler, G. W.; and Maloney, J. J. The Hospice Choice: In Pursuit of a Peaceful Death. New York: Simon and Schuster, 1998.
National Hospice and Palliative Care Organization. Facts and Figures on Hospice Care in America.. Alexandria, Va.: NHPCO, 2001. Available at www.nhpco.org
National Hospice Foundation. How to Select a Hospice Program. Alexandria, Va.: NHF, 2001. Available at www.nhpco.org, click on How to Select a Hospice Program.
Oregon Hospice Association. Summary Report: Program Data 1998. Portland, Ore.: OHA, 1999.
Oregon Hospice Association. Summary Report: Program Data 1999. Portland, Ore.: OHA, 2000.
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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.