Am Fam Physician. 2000;61(1):214
Despite efforts to increase the use of home health care and hospice care as alternatives to hospitalization, almost two thirds of adults in the United States die in hospitals. Efforts to change the existing model have been made without knowledge of patient preferences. Home care is often difficult for patients living alone or for those whose family members have work obligations. Because most deaths occur among adults 65 to 89 years of age, the preferences of this population are particularly important. Fried and associates evaluated site of death preferences among older adults hospitalized with congestive heart failure, chronic obstructive pulmonary disease and pneumonia.
Adults 65 years of age or older were interviewed two months after hospitalization. A total of 246 participants were asked to state their preferences if they had a nonterminal illness and if they had a terminal illness. A separate qualitative set of interviews was conducted among persons in the same age group who had been hospitalized in the past six months with any of the index illnesses and who were now receiving home care. After 29 interviews, these interviews were stopped because additional participants were not adding new concepts.
When recovery from illness was likely (nonterminal illness), 113 participants (46 percent) preferred home treatment compared with 132 (54 percent) who preferred hospitalization. One person did not have a preference. When recovery was unlikely (terminal illness), 106 (43 percent) participants preferred home treatment, 118 (48 percent) preferred hospitalization and 22 (9 percent) did not know. Preference was not associated with age, gender, ethnicity, education or diagnosis. The 29 qualitative interviews revealed a wide variety of reasons involved in participants' decisions. Several participants did not respond, stating that they would handle the issue when the time came.
The authors conclude that the preference for home care cited by the study participants exceeds current practice. Preferences may be related to the likelihood of recovery from illness. Many participants selected nursing home care as an option, perhaps with the assumption that terminal care represented an exacerbation of a chronic illness, and they were concerned about issues surrounding long-term care. Participants' reasons for their decisions varied widely, suggesting that individualized options may be necessary to meet all concerns.
editor's note: Most studies of patients with a chronic terminal disease indicate a desire to spend the last part of their life in a nursing home or at home. Unfortunately, most patients end up in the hospital. Recognizing and documenting their preferences with a living will can help patients direct where they spend their final days. Of course, living wills require periodic review because patient preferences often change as their health status or social structure changes.—r.s.