Many HIV Patients Don't Plan for End-Of-Life Care
By Charnicia E. Huggins
Originally published by Reuters Health, June 13, 2001
NEW YORK (Reuters Health) — As great strides are made in drug therapy for HIV, infected individuals are living longer, albeit with some degree of disability or incapacity. In such cases, complicated end-of-life care decisions are often required, yet many HIV-positive individuals do not discuss such issues with their physicians, according to a team of California researchers.
"Despite long-term treatment for a chronic disease that will most likely result in death, lack of communication about wishes leaves these patients at risk for difficult decision making when they are seriously ill and for care that does not match their wishes,'' Dr. Neil S. Wenger of the University of California, Los Angeles, told Reuters Health.
In a study of nearly 3,000 HIV-positive individuals, Wenger and his colleagues found that half had not discussed end-of-life care issues—such as living wills, resuscitation or the use of life-sustaining machines—with their physicians.
Those who did discuss end-of-life care were almost six times more likely to state their preferences in a document known as an advance directive, according to the report in the June 13th issue of The Journal of the American Medical Association.
"This suggests that physicians can influence end-of-life communication by bringing up the issue, especially in trusting, continuous relationships,'' Wenger said.
Physicians were more likely to discuss end-of-life care with white patients than with black or Latino patients, the authors note. Women and those with children in the home were also more likely to discuss end-of-life care with their doctors. However, patients who contracted HIV via injection drug use and those with less education were less likely to discuss the issue.
"Non-white individuals, the less well-educated, and persons in denial are…groups for HIV care providers and institutions to target,'' Wenger said.
When asked their preferences about the aggressiveness of their end-of-life care, 55% of the patients said they would ''definitely'' or "probably'' want their pain to be relieved, even if doing so would lead to early death. And 44% said they would ''definitely'' or "probably'' want their life to be extended, regardless of whether or not they would have more discomfort. Men were more likely than women to report a desire for their life to be extended, the researchers report.
In addition, many patients were unwilling to tolerate certain negative health conditions, the investigators found. More than three quarters of the patients said they would rather die than to remain alive in a coma, remain permanently mechanically ventilated or remain permanently fed through a tube, the findings show. Men and younger patients, however, were more likely to report a tolerance for such health states.
"If patients want to have care when they are seriously ill match their goals, they need to discuss these issues beforehand,'' Wenger said. "Early conversations are an important part of medical care planning for people with chronic disease.''
These findings "might serve as a wake up call to patients to raise these issues with their physicians,'' the researcher added.
