We have transformed our view of death: Rather than an accepted part of life's experience, it is now seen as an unfamiliar and much feared event.
Popular images of death and dying are a jumble of gun violence, young and middle-aged adults on television fighting for life with the help of tubes, intensive care units and modern machinery, and nineteenth century images of feverish mothers or children attended at home by their grieving families and helpless physicians. In reality, these media visions bear little relationship to the actual human experience of dying in the United States. In our society, the overwhelming majority of people who die are elderly. They typically die slowly of chronic diseases, over long periods of time, with multiple coexisting problems, progressive dependency on others, and heavy care needs met mostly by family members. They spend the majority of their final months and years at home but, in most parts of the country, actually die in the hospital or nursing home surrounded by strangers. Many of these deaths become protracted and negotiated processes, with healthcare providers and family members making difficult, often wrenching, decisions about the use or discontinuation of such life-prolonging technologies as feeding tubes, ventilators, and intravenous fluids. There is abundant evidence that the quality of life during the dying process is often poor, characterized by inadequately treated physical distress, fragmented care systems, poor to absent communcation between doctors and patients and families, and enormous strains on family caregiver and support systems.
DEMOGRAPHY OF DYING AND DEATH IN THE UNITED STATES
The median age at death in the United States is now 77 years, associated with a steady and linear decline in age-adjusted death rates since i94o. While in 1900 life expectancy at birth was less than so years, a girl born today may expect to live to age 79 and a boy to age 73. Those of us reaching 75 years can expect to live another ten (men) to twelve (women) years on average. This dramatic and unprecedented increase in life expectancy (equivalent to that occurring between the Stone Age and the year I9oo) is due primarily to decreases in maternal and infant mortality, resulting from improved sanitation and nutrition and effective control of infectious diseases. The result of these changes in demography has been an enormous growth in the number and health of the elderly, so that by the year 2030, zo percent of the United States' population will be over age 65, as compared to fewer than 5 percent at the turn of the century.
While death at the turn of the century was largely attributable to infectious diseases, today the leading causes of death are heart disease, cancer, and stroke. Advances in treatment of atherosclerotic vascular disease and cancer have turned these previously rapidly fatal diseases into chronic illnesses with which people often live for many years before death. In parallel, deaths that occurred at home in the early part of the twentieth century now occur primarily in institutions (57 percent in hospitals and 17 percent in nursing homes). The reasons for this shift in location of death are complex, but they are related to Medicare reimbursement for hospital-based care, with the subsequent rise in the availability of hospitals and hospital beds and in the care burdens of chronicity and functional dependency typically accompanying life-threatening disease in the elderly. The older the patient, the higher the likelihood of death in a nursing home or hospital, with an estimated 58 percent of people over 85 spending at least some time in a nursing home in the last year of life (National Center for Health Statistics, I992).
These statistics, however, hide the fact that the majority of an older person's last months and years is still spent at home in the care of family members, with hospitalization or nursing home placement occurring only near the very end of life. …