August 27, 1999
Quality of death among AIDS patients depends on better communication
Dying patients all have different wishes about end-of-life care ? some fear they will lose control of their lives and that the dying process will be prolonged through technological measures, while others worry that they may lack access to such treatments. But these desires are not being adequately communicated ? studies and programs have revealed a lack of discussion between patients and physicians. This may be particularly true among patients with AIDS, who frequently have additional barriers to effective communication with health-care providers.
“Nobody wants to die in pain, but people vary in how willing they are to forgo being alert and awake in order to control pain,” says Dr. J. Randall Curtis, division of pulmonary and critical care at Harborview Medical Center, and assistant professor at the University of Washington.
A series of articles on the quality of end-of-life care among AIDS patients, the most recent published in the June issue of the journal “AIDS”, offered some surprising results. In the first studies in this series, Curtis and colleagues conducted focus groups among 47 patients with AIDS and 19 physicians with AIDS experience. Typical questions related to whether the patient would choose to receive life-sustaining treatments at various states of end-stage AIDS disease.
“Patients seem to think that a living will takes care of communicating their wishes, but living wills may do more harm than good because for some patients they provide a false sense of security that they have done all they need to ensure that their wishes will be followed if they become critically ill,” says Curtis. “For example, a living will may state ?no aggressive treatment if the person is in a terminal condition,? but what does that mean? The standard form is not helpful in making decisions, and physicians are generally disillusioned with the usefulness of living wills.”
Another obstacle is that some patients think having discussions about dying might hasten the process, and therefore they prefer not to mention death at all. Those less likely to communicate about end-of-life care include ethnic minorities (African-Americans, Hispanics or Native Americans); low-income patients; men who had contracted HIV from injecting drugs; and women with high-risk sex partners. In contrast, whites, homosexual or bisexual men were more likely to have communicated their wishes about end-of-life care.
Regarding the quality of communication between physician and patient, 25 percent of the time both parties disagreed that they had talked about how they wanted to die. It was also found that patients were less likely to speak with physician?s assistants or nurse practitioners about end-of-life care than with physicians.
“There is a lot of variability about what quality of life AIDS patients are willing to accept, especially regarding aggressiveness of care,” says Curtis. “People are different, and our research highlights the importance of not having a blanket approach. There is no one single ideal quality of death.”
Although the latest study shows an increase in discussing advance directives and end-of-life care, there is still substantial room for improvement, he adds.
