'The Big Elephant In The Corner Of The Room'

December 08, 1997

AIDS Patients, Doctors Shy From Talk Of End-of-Life Care

Some patients with AIDS are reluctant to talk about what kind of health care they want when the end of life is approaching because they are afraid that will hasten their death, researchers have found.

Others want to protect their physician from discussions they consider uncomfortable or even illegal, or they fear discrimination by the medical system, or they've signed a living will and believe that makes discussion unnecessary.

For their part, the researchers found, some physicians refrain from such conversations because they don't want to undermine the patient's hope, or they fear they won't be perceived as being aggressive enough in treating the patient, or the physician is "not ready for the patient to die."

These were just some of the 29 barriers and facilitators to end-of-life care discussions that J. Randall Curtis, MD, MPH, and Donald L. Patrick, PhD, MSPH, of the University of Washington identified in a series of nine focus groups with 47 AIDS patients and 10 physicians.

Writing in the December issue of the Journal of General Internal Medicine, they concluded that often, both patient and doctor are waiting for the other to start the conversation.

Said one patient: "I would be a hell of a lot more comfortable if my doctor would come to me and say, "We need to talk about this."

And a physician: "You have to wait for (patients) to bring it up because they live it all the time.... You have to give them a certain amount of denial.... They're the ones who have to cross that border."

The net result is that, as previous research has shown, most AIDS patients would like to talk with their physicians about end-of-life care but only a minority of them do.

Commented one physician, "(B)ringing up such a serious topic...for people with HIV infection for whom it is a very stressful and very real part of their 24-hour existence -- I think it's difficult. It's usually the big elephant in the corner of the room that you don't talk about."

Of special concern, Curtis and Patrick write, is that some patients and physicians believed discussing end-of-life care could be harmful and "may even hasten death." Citing reports of cases in which such discussions seemed to cause psychological pain, the researchers said health care providers "should be aware that some patients may feel these discussions can cause harm" and that they should give such patients opportunity to express their concern.

They said that whatever barriers any particular patient is confronting, it is especially important that physicians seek to identify those barriers and help patients overcome them.

The research was supported by The Picker/Commonwealth Scholars program and the University of Washington Royalty Research Fund.

The Journal of General Internal Medicine (JGIM), a monthly peer-reviewed journal and the official journal of the Society of General Internal Medicine, publishes original articles on research and education in primary care. For more information about JGIM, contact: Margo Alderton, (215) 823-4471.

Posted by the Center for the Advancement of Health
(link: www.cfah.org),
Contact: Richard Hebert (rhebert@cfah.org)

Center for Advancing Health

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