Death, Dying, and Hospice Care

The experience of death and dying has changed in the United States since the 19th century. Back then, most people died in their homes surrounded by family and friends. Rituals included adults as well as children, especially in keeping vigil as the dying person slowly drifted into death. Beginning in the 20th century, the rate of infant mortality dropped sharply. Life expectancy increased by approximately 30 years during the 20th century, and now a newborn is expected to live well into the seventh or eighth decade of life. The causes of death have also shifted from infectious diseases, such as diarrheal diseases, respiratory infections, and parasitic diseases (including typhoid fever, diphtheria, and tuberculosis) that preyed on the very young, to chronic diseases (including cancer, stroke, and cardiovascular diseases) that affect mostly the elderly. This epidemiological shift in the patterns of disease is attributed to better hygiene and housing, improved diet, safer roads and work conditions, safer transportation vehicles, and the unprecedented development of medical technology starting with the advent of antibiotics during the mid-20th century.

During the early 1900s, approximately 80% of deaths occurred at home; only 20% occurred in institutional settings (hospitals and nursing homes). By the early 21st century, this trend was reversed, and now nearly 80% of deaths occur in hospitals and nursing homes surrounded by advanced medical technology, including ventilators, dialysis machines, and artificial feeding tubes. The availability of technologically sophisticated medical interventions has resulted in the extension of life in debilitated conditions that prolong the natural process of dying, leading to the development of hospice care.

The hospice movement was born out of the philosophy that it is possible to maintain a high quality of life for as long as possible but to give priority to thequality of life rather than thequantity of life. This is achieved through surrounding the person experiencing a life-limiting illness with loved ones and through focusing on palliative and spiritual care rather than on medical interventions that prolong the dying process. Hospice is not necessarily a place; it is a program of medical, social, and spiritual services provided to the dying individual and his or her family. Hospice services can be provided in the person's home, a hospital, a nursing home, an assisted-living facility, or a free-standing hospice center. In the United States, anyone facing a life-limiting illness can qualify for hospice services regardless of age, sex, religion, race, or medical diagnosis and also regardless of ability to pay. Services are funded by all traditional medical funding sources such as Medicare, Medicaid, health maintenance organizations, private insurance companies, and private funding.

St. Christopher's Hospice, the first-ever hospice, was founded in 1967 in London by Dame Cicely Saunders. The concept of hospice care was later brought to the United States by Florence Wald, dean [Page 136]of the Yale School of Nursing, who invited Saunders to become a faculty member at Yale. The Connecticut Hospice, the first hospice in the United States, was then opened in 1974 in Branford, Connecticut. Hospice services have become increasingly accepted over the years, and in 2001 approximately 3,200 hospice programs provided care to 775,000 patients in the United States alone. One fourth of all those who died in 2001 did so while receiving hospice services. Hospice services are provided by a multidisciplinary team that includes physicians; nurses; home health aides; social workers; spiritual counselors; volunteers; and speech, physical, and occupational therapists.

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