HOSPICE MOVEMENT

The modern hospice movement is a medically directed, nurse-coordinated program providing a continuum of home and inpatient care for the terminally ill and their families. The program affords palliative and supportive care to meet the special needs arising out of the physical, emotional, spiritual, social, and economic stresses that are experienced during the final stages of illness, and during dying and bereavement. An interdisciplinary team, under the direction of an autonomous hospice administration, provides the care.

In medieval times many hospices such as that connected with the monastery of St. Bernard in the Swiss Alps were established to care for sick travelers and indigent pilgrims. The modern movement, however, with its concern for the terminally ill, traces its origins to the 19th century. The Irish Sisters of Charity, inspired by the vision of their foundress, Sister Mary aikenhead (d.1858), a one-time coworker of Florence Nightingale, established Our Lady's Hospice at Harold's Cross, outside Dublin in 1879. Another of the early hospices, Sacred Heart Hospice, was founded by the Sisters of Charity in Australia in 1890. In the United States there were a few not-for-profit institutions such as Calvary Hospital in New York and Youville Hospital in Cambridge, Mass., that cared for dying patients who were indigent. About the turn of the century, two hospices in London, St. Luke's Home (1893) and St. Joseph's (1905), developed the groundwork for the holistic care that has become the hallmark of the modern movement.

The hospice movement, as it is known today, is associated with the names of Dame Cicely Saunders and Elizabeth Kübler-Ross. Dame Cicely worked at St. Joseph's until 1967 when, with an initial gift of £500 from a dying patient, she established St. Christopher's Hospice in Sydenham, just outside London. Dr. Saunders stated: "the name hospice, 'a resting place for travelers or pilgrims,' was chosen because this will be something between a hospital and a home, with the skills of one and the hospitality, warmth and the time of the other." In 1963 Saunders lectured at Yale University; the audience included Florence Wald, who was to become a pioneer in the movement in the United States. Wald was a founder of the freestanding Connecticut Hospice in Cambridge, Mass., the first such agency in the United States.

The ground had been prepared for the hospice concept by The Meaning of Death (1959), a series of essays edited by Henry Fiefel, and similar works, but it was the publication of Kübler-Ross's On Death and Dying (1970) that proved the real catalyst to the acceptance and development of hospice care in the U.S. Acute-care hospitals have as their primary purpose the cure of sick patients and are not equipped to attend the wide range of stresses that concern the terminally ill. Until recently, medical and nursing schools seldom dealt with the many aspects of death and dying; physicians and nurses, trained to save lives, were not instructed on how to address the varied needs of dying patients and their families.

The hospice movement centers on the freestanding, autonomous agency that provides comprehensive home-care services as well as inpatient care. Most hospices also provide hospital back up. The treatment parameters have been broadened to include patients with any prognosis in need of symptom management.

Whatever the organizational basis, hospice care is provided by a physician-directed team that invariably includes a nurse and several if not all the following: a social worker, a pastoral counselor, a dietician, and volunteers to assist the patient and family with personal care and the chores of daily living. Despite the recognized need for a more humane and sensitive approach to palliative care, the hospice movement in the U.S. has not become more widespread because of financial, organizational, legal, and psychological obstacles. Major strides have been made in funding, with 95 percent of the daily sum covered by health care, the remaining five percent being obtained by volunteer hours.

The National Hospice Organization (NHO), established in 1978, has as its primary functions the promotion of hospice care, research, consultation, education and the advocacy of patients' interests, as well as those of their family and care givers. Presently, there are more than 3,000 organizations providing hospice interests. The NHO headquarters is located in Arlington, Va.

Bibliography: j. e. cimino, "Palliative Care: Overview of the Major Hospice Movement—Some Issues and Some Answers," Journal of Long-Term Home Health Care 17 (Fall 1998).

[m. cronin-marthaler]