The discussion of end-of-life medical care by primary care patients and physicians: a multicenter study using structured qualitative interviews. The EOL Study Group.

OBJECTIVES

To identify primary care patients' and physicians' beliefs, attitudes, preferences, and expectations regarding discussions of end-of-life medical care, and to identify factors limiting the quality and frequency of these discussions.

DESIGN

Descriptive study using audiotaped, structured, qualitative interviews.

SETTING

Ambulatory care clinics and offices at eight medical centers in six states.

PARTICIPANTS

Forty-three primary care physicians and 47 ambulatory outpatients.

RESULTS

The patients expressed strong feelings about having end-of-life discussions early in their medical courses while they were competent. They desired straightforward and honest discussions and were less concerned than the physicians about damaging hope. The patients wanted their physicians to play central roles in discussions and both the patients and the physicians noted the impact of the patient-physician relationship on these discussions. The patients desired information focusing more on expected outcomes than on medical processes. The physicians expressed feelings of ambiguity when their desire to save lives clashed with their belief that aggressive life-sustaining treatments were futile. The physicians described their roles in end-of-life discussions in five major categories; lifesaver, neutral scientist, guide, counselor, and intimate confidant. The physicians considered living wills excellent "icebreakers" for starting discussions but of limited utility otherwise.

CONCLUSIONS

Patients prefer end-of-life discussions earlier and with greater honesty than physicians may perceive. These discussions are inseparably linked with the patient-physician relationship. Physicians can better address patients' desires in end-of-life discussions by altering their timing, content, and delivery.