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 hospice movement began 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:
- 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 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.
Present models of hospice care
According to the Hospice Foundation of America, there are presently about 3,100 hospice programs operating in the United States, including Puerto Rico and Guam. During 1998, hospice programs in the United States cared for nearly 540,000 people.
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.
Today, there are several successful hospice models. As of 2001, about 80% 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 use 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.
Although the hospice movement has gained widespread acceptance, it is often easier for health professionals to accept hospice theory as opposed to practice. For example, most American health professionals are trained to fight disease with the goal of cure. The hospice concept, on the other hand, requires that physicians, nurses, and other caregivers accept death and dying as the natural, inevitable conclusion to life, rather than viewing death as a battle lost. Some health professionals continue to view death as a personal defeat, however, and they remain uncomfortable with hospice care.
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.
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, 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.
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 pet therapy and fill patient rooms with original artwork and fresh flowers.
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.
The hospice approach emphasizes caring instead of curing, and some health professionals find this practice inconsistent with their previous education, experiences, beliefs, and traditions. Moreover, the involvement of complementary and alternative medicine practitioners may be unsettling for health professionals unaccustomed to interacting with these practitioners.
The hospice approach also requires health professionals to collaborate; they must work together as a team to identify and meet the needs of patients and family members. A hospice team is different from the traditional health-care team because the physician is not necessarily the team leader. In hospice programs, patients and families receive more of their care from nurse specialists with advanced coursework and education, nursing assistants, social workers, pastoral counselors, and volunteers than they do from physicians. Hospice team members support, encourage, and rely on one another as they work together toward the shared goal of assisting patients and families through life's final passage.
Health professionals and volunteers who work in hospice programs have special needs related to professional and emotional support. Since they work so closely with patients and families, they often experience grief and depression when patients die. Sympathy and empathy, the qualities that enable them to perform effectively in their hospice roles, may also hinder their abilities to maintain the emotional distance needed to successfully perform their work, or may lead to premature burnout.
Professional associations, support groups, and counselors provide forums in which hospice workers may share their challenges, frustrations, and losses. Many hospice programs teach workers and volunteers a variety of ways to reduce work-related stress and prevent burnout. In addition to teaching various relaxation techniques and the healing power of laughter, these programs help health professionals concentrate on the unique satisfactions of their work, their shared values, and their important contributions to the lives of patients and families.
Kübler-Ross, Elisabeth. On Death and Dying. New York: Macmillan, 1969.
Rabow, Michael W., MD, Steven Z. Pantilat, MD, and Robert V. Brody, MD. "Care at the End of Life." Current Medical Diagnosis & Treatment 2001, edited by Lawrence M. Tierney, Jr., MD, et al. New York: Lange Medical Books/McGraw-Hill, 2001.
Sheehan, Denise C., and Walter B. Forman. Hospice and Palliative Care. Boston: Jones and Bartlett Publishers, 1996.
Billings, Andrew J. "Palliative Care." British Medical Journal 321, no. 7260 (September 2, 2000): 555-558.
Kaur, Judith S. "Palliative Care and Hospice Programs." Mayo Clinic Proceedings 75, no. 2 (February 2000): 181-184.
Hospice Foundation of America. 2001 S Street NW, Suite 300, Washington, DC 20009. (800) 854-3402. <http://www.hospicefoundation.org>.
International Association of Hospice and Palliative Care. UT MD Anderson Cancer Center, 1515 Holcombe Blvd., Box 08, Houston, TX 77030. <http://www.hospicecare.com>.