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HIV/AIDS Research

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Many people with AIDS change their minds about end-of-life care as the disease progresses

Health care providers should periodically reassess patient preferences for life-sustaining care, especially for patients with a progressive disease such as AIDS, concludes a study supported by the Agency for Health Care Policy and Research (HS06239). The study showed that about one-fourth of AIDS patients changed their minds about life-sustaining care over a 4-month period. Changes in physical functioning, pain, or thoughts of suicide were more apt to modify a patient's decision about resuscitation. Patients who lacked an advance directive, had not completed high school, or became more severely ill during the 4-month period were more likely to change their preferences about life-sustaining care.

The researchers administered two surveys 4 months apart and then reviewed the medical records of 252 patients with AIDS. The study was conducted during 1990 and 1991 at three health care sites in Boston. Of respondents who initially desired cardiac resuscitation, 23 percent decided to forego it at followup 4 months later; 34 percent of those who initially said they would decline care later said they would accept it. Of those who initially desired any of the several other life-extending treatment scenarios, 25 percent decided to forego them 4 months later; 24 percent of those who initially said they would decline life-extending care later said they would accept some treatment.

Patients who discussed their preferences with at least one doctor were just as likely as others to change their wish for cardiac resuscitation. Age, sex, race, emotional health, clinical severity of illness, social support, and site of care were not significantly correlated with change in either desire for cardiac resuscitation or acceptance of life-extending treatment. The researchers conclude that health care providers should be cautious in interpreting advance directives that have not been recently evaluated for patients experiencing rapid changes in their health. Advance directives cannot replace ongoing patient-doctor communication, caution the researchers.

See "The stability of preferences for life-sustaining care among persons with AIDS in the Boston Health Study," by Joel S. Weissman, Ph.D., Jennifer S. Haas, M.D., Floyd J. Fowler Jr., Ph.D., and others, in the January 1999 Medical Decision Making 19, pp. 16-26.

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