Barriers to communication about end-of-life care in AIDS patients

OBJECTIVE: Patients and physicians do not adequately discuss patients' preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians. PARTICIPANTS: Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups. MEASUREMENTS AND MAIN RESULTS: Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a Living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions. CONCLUSIONS:Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.