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 wide 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 of 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. These include:
During this same period, Dr. Kübler-Ross, a psychiatrist working in Illinois, published results from her ground-breaking 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 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 health-care 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.
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, or 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 published in 2003 found that a significant minority of family practitioners and internists have problems interacting with hospices and hospice staff.
According to the National Hospice and Palliative Care Organization (NHPCO), there are 3,139 hospice programs operating in the United States as of 2003, 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. The Centers for Disease Control and Prevention (CDC) National Center for Health Statistics gives the following figures for combined home health and hospice care for 2000, the latest year for which data are available: number of home health and hospice care agencies, 11,400; number of patients served by these agencies, 1.5 million.
There are several successful hospice models as of 2003. At present, over 90% 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. Unfortunately, it 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 health care 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.
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 as well as the admission of children to other hospices. As of 2003, 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). Hospices related to the various branches of Christianity have a priest or pastor on call for prayer, administration of the sacraments, and similar religious observances. The Zen Hospice Project sponsors programs reflecting the Buddhist tradition of compassionate service and maintains a 24-bed unit within the Laguna Honda Hospice in California.
The goal of freestanding hospices and even hospital-based programs is the creation and maintenance of warm, comfortable, home-like 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.
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 as well as 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.
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.
In addition 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 2002 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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American Academy of Hospice and Palliative Medicine (AAHPM). 4700 West Lake Avenue, Glenview, IL 60025-1485. (847) 375-4712. http://www.aahpm.org .
Children's Hospice International (CHI). 901 North Pitt Street, Suite 230, Alexandria, VA 22314. (703) 684-0330 or (800) 2-4-CHILD. http://www.chionline.org .
Hospice Foundation of America. 2001 S Street NW, Suite 300, Washington, DC 20009. (800) 854-3402. http://www.hospicefoundation.org .
National Hospice and Palliative Care Organization (NHPCO). 1700 Diagonal Road, Suite 625, Alexandria, VA 22314. (703) 837-1500 or (800) 658-8898 (Helpline). http://www.nhpco.org .
National Institute for Jewish Hospice (NIJH). Cedars-Sinai Medical Center, 444 South San Vincente Blvd., Suite 601, Los Angeles, CA 90048. (800) 446-4448. http://www.jewishla.org .
National Prison Hospice Association (NPHA). P. O. Box 3769, Boulder, CO 80307-3769. (303) 544-5923. http://www.npha.org .
Zen Hospice Project. 273 Page Street, San Francisco, CA 94102. (415) 863-2910. http://www.zenhospice.org .
Rebecca Frey, Ph.D.