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AIDS Patients Ignore End-of-Life Plans

Fewer than 4 in 10 prepare directives

TUESDAY, June 12, 2001 (HealthDayNews) -- Most people infected with the AIDS virus fail to write down instructions on what to do should they require aggressive care to keep them alive, an oversight that could cause them unnecessary and prolonged suffering.

A study in the June 13 Journal of the American Medical Association says only half of patients with HIV discussed end-of-life care with their doctors. Moreover, fewer than four in 10 prepared a living will or other document telling doctors and family members what to do in the event they need desperate measures like feeding tubes or artificial ventilation.

While the numbers are similar or a bit better than for patients with cancer, heart failure and other terminal illnesses, experts say the study demonstrates a need for AIDS doctors to better communicate about end-stage care, especially among minorities and the poorly educated.

"That's particularly problematic in the context of the fact the minority [AIDS] populations are among the quickest growing in the United States," says lead study author Dr. Neil Wenger, a researcher at the University of California at Los Angeles.

AIDS patients often have weak social networks and fractured family ties -- "exactly the situations where one would like to have an advance directive signed, yet the vast majority didn't have one," Wenger says.

The Centers for Disease Control and Prevention (CDC) estimates that 800,000 to 900,000 Americans are infected with HIV, and roughly 320,000 of them have full-blown AIDS. Despite great advances in AIDS treatment in recent years, the incurable disease remains a major cause of death in the United States.

The researchers surveyed 2,864 HIV-positive patients nationwide in 1996 and 1997, asking about their conversations with physicians about end-of-life care, advanced directives, preferences regarding aggressive treatment and willingness to tolerate permanent, adverse health problems in the future.

Fifty percent said they'd raised at least some aspect of end-of-life care with their doctors, while 1,088, or 38 percent, made out advance directives. Patients who'd talked with their physicians about dying were nearly six times more likely than those who avoided the issue to write down their end-of-life wishes.

Blacks and Hispanics were about 40 percent and 25 percent less likely, respectively, to discuss end-stage care with their doctors than whites, while women and patients with children living at home were more likely to raise these issues.

People who acquired HIV through injected drug use talked about end-of-life care less often than those who became infected through sexual contact, and those with less schooling discussed these matters less frequently than better educated patients.

Wenger says the researchers had unusually good access to information about patients' relationships with their doctors and their feelings, which ranged from optimism to denial. Patients with tighter bonds and better communication with their physicians were more likely to have made advance directives.

As the AIDS epidemic enters its third decade, "people who care for AIDS patients should be accustomed to having these discussions," says Dr. Albert Wu, an HIV specialist who studies end-of-life care at Johns Hopkins School of Public Health in Baltimore. "However, in AIDS, as with all diseases, I think doctors and patients conspire together to avoid having discussions about advanced directives."

While raising the subject of death might not be easy for patients or their physicians, the latest study suggests that it can have "terrifically large" benefits, Wu says.

Anita Rosen, director of special programs at the Council on Social Work Education in Alexandria, Va., says the latest results aren't surprising. Asking about advance directives and power-of-attorney letters is required of nursing homes and other long-term treatment facilities, but she says typically that's "very perfunctory. It's very different from really talking with people, explaining [end-stage care] to people."

Rosen says doctors get poor marks for raising terminal treatment issues, while nurses do a little better, and social workers are perhaps the best. Yet in general the health-care community is "not very good about it," she says.

What To Do

Death is never a comfortable subject, but taking a few minutes to talk with your doctor about it might make a big difference when you're terminally ill. "The key is just communication. It can give patients more control and better peace of mind," Wu says.

For more on advanced directives, visit the Health Care Financing Administration. For more on AIDS, visit the CDC or the World Health Organization.

SOURCES: Interviews with Neil Wenger, M.D., associate professor of medicine, University of California, Los Angeles; Anita Rosen, Ph.D., director of special projects, Council on Social Work Education, Alexandria, Va., and Albert Wu, M.D., M.P.H., associate professor of health policy and management, Johns Hopkins University School of Public Health, Baltimore; June 13, 2001 Journal of the American Medical Association
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