The median age at death in the United States is now 77 years and has been associated with a steady and linear decline in age-adjusted death rates since 1940. In 1900, life expectancy at birth was <50 years; a girl born today may expect to live to age 79 and a boy to age 73. Those reaching 65 years can expect to live another 18 years on average and those reaching age 80 can expect to live an additional 8 years. These unprecedented increases in life expectancy (equivalent to that occurring between the Stone Age and 1900) are due primarily to decreases in maternal and infant mortality, resulting from improved sanitation, nutrition, and effective control of infectious diseases. As a result, there has been an enormous growth in the number and health of the elderly. By the year 2030, 20% of the United States’ population will be over age 65, as compared to fewer than 5% at the turn of the twentieth century (7).

Although death at the turn of the twentieth century was largely attributable to acute infectious diseases or accidents, the leading causes of death today are chronic illness such as heart disease, cancer, stroke, and dementia. With advances in the treatment of atherosclerotic vascular disease and cancer, many patients with these diseases now survive for years. Many diseases that were rapidly fatal in the past have now become chronic illnesses.

In parallel, deaths that occurred at home in the early part of the twentieth century now occur primarily in institutions (57% in hospitals and 17% in nursing homes) (8). The reasons for this shift in location of death are complex, but appear to be related to health system and reimbursement structures that promote hospital-based care and provide relatively little support for home care and custodial care services despite the significant care burdens and functional dependency that accompany life-threatening chronic disease in the elderly. The older the patient, the higher the likelihood of death in a nursing home or hospital, with an estimated 58% of persons over 85 spending at least some time in a nursing home during the last year of their life (8). These statistics, however, hide the fact that most of an older person’s last months and years is still spent at home in the care of family members, with hospitalization and/or nursing home placement occurring only near the very end of life. National statistics also obscure the variability in the experience of dying. For example, the need for institutionalization or paid formal caregivers in the last months of life is much higher among the poor and women. Similarly, persons suffering from cognitive impairment and dementia are much more likely to spend their last days in a nursing home compared with cognitively intact, elderly persons dying from nondementing illnesses.

The incentives promoting an institutional—as opposed to home—death persist despite evidence that patients prefer to die at home. These incentives persist in the United States despite the existence of the Medicare Hospice Benefit (9), which was designed to provide substantial professional and material support (medications, equipment, skilled nursing visits) to families caring for the dying at home for their last 6 months of life. Reasons for the low rate of utilization of the Medicare Hospice Benefit vary by community but include the inhibiting requirements that patients acknowledge that they are dying in order to access the services, that physicians certify a prognosis of 6 months or less, and that very few hours (usually 4 or less) of personal care home attendants are covered under the benefit. In addition, the fiscal structure of the Medicare Hospice Benefit lends itself well to the predictable trajectory of late-stage cancers or acquired immunodeficiency syndrome (AIDS), but not so well to the unpredictable chronic course of other common causes of death in the elderly such as congestive heart failure, chronic lung disease, stroke, and dementing illnesses.

Traditional Medicare coverage in the United States also fails to meet the needs of the seriously ill, older adult. Neither paid personal care services at home nor nursing home costs for the functionally dependent elderly are covered by Medicare, but instead are paid for approximately equally from out-of-pocket and Medicaid budgetary sources that were originally developed to provide care for the indigent.

In nursing homes, standards of care focus on improvement of function, and maintenance of weight and nutritional status. Evidence of the decline that accompanies the dying process is typically regarded as a measure of substandard care (10). Therefore, a death in a nursing home is often viewed as evidence particularly by state regulators; of poor care rather than an expected outcome for a frail, chronically ill, older person. The financial and regulatory incentives and quality measures that currently exist in long-term care promote tube feeding over spoon feeding and transfer to hospital or emergency department in the setting of acute illness or impending death. They fail to either assess or reward appropriate attention to palliative measures, including relief of symptoms, spiritual care, and promotion of continuity with concomitant avoidance of brink-of-death emergency room and hospital transfers (11) (Table 74.1).

Although death occurs far more commonly in older adults than in any other age group, remarkably little is known about how death occurs in the oldest old, those over age 75. Most research on the experience of dying has been done in younger populations, and most studies examining pain and symptom management have focused on younger populations with cancer or AIDS. Studies in older adults have focused
primarily on patients’ preferences for care rather than the actual care received. Indeed, the largest study to date of the dying experience in the United States [study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT)] studied the hospital experience of patients with a median age of 66 (9). The median age of death in the United States is 77 years, and many of the oldest old die in nursing homes or at home rather than in hospital. Data from Medicare and state Medicaid registries suggest that expensive and high technology interventions are less frequently applied to the oldest patients, independent of functional status and projected life expectancy. Whereas these discrepancies may reflect patient preferences and indicate appropriate utilization of resources and patient preferences, it is more likely that they represent a form of implicit rationing of resources based on age. The implication is disturbing, considering that half of the highest-cost, Medicare enrollees survive at least 1 year (12).

Aside from pain and other sources of physical distress [discussed in the subsequent text (see the section Symptom Management: The Challenge of Pain)], the key characteristic that distinguishes the dying process in the elderly from that experienced by younger groups is the nearly universal occurrence of long periods of functional dependency and need for family caregivers in the last months to years of life. In SUPPORT, the median age of participants was 66 years and 55% of patients had persistent and serious family caregiving needs during the course of their terminal illness (13), and in another study of 988 terminally ill patients, 35% of families had substantial care needs (14). This percentage rises exponentially with increasing age. Although paid care supplements provides the sole source of care in 15–20% of patients (transportation, homemaker services, personal care, and more skilled nursing care), the remaining 80–85% of patients receive most of their care from unpaid family members (14). Furthermore, most family caregiving is provided by women (spouses and adult daughters and daughters-in-law), placing significant strains on the physical, emotional, and socioeconomic status of the caregivers. Those ill and dependent patients without family caregivers, or those whose caregivers can no longer provide nor afford needed services, are placed in nursing homes. In the United States, this typically occurs after patients exhaust all of their financial savings in order to become eligible for Medicaid. At present, 20% of the over age 85 population reside in a skilled nursing facility, and this number is expected to increase dramatically in the next 50 years (15). Present estimates suggest the current number of skilled nursing facility beds in the United States will be woefully inadequate for the needs of our aging population.

The constellation of symptoms seen in dying, older, adult patients is different from that of young adults. Delirium, sensory impairment, incontinence, dizziness, cough, and constipation are more prevalent in older adults (16). The elderly, on average, have 1.5 more symptoms than younger persons in the year prior to death, and 69% of the symptoms reported for people aged 85 or more lasted more than a year as compared with 39% of those for younger adults (<55 years) (16).