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Neil S. Wenger, MD; David E. Kanouse, PhD; Rebecca L. Collins, PhD; Honghu Liu, PhD; Mark A. Schuster, MD,PhD; Allen L. Gifford, MD; Samuel A. Bozzette, MD,PhD; Martin F. Shapiro, MD,PhD

JAMA. 2001;285:2880-2887.

Context  Deficits in advance care planning leave many patients and their physicians unprepared for decisions about end-of-life care. Even though the prognosis has improved for many persons with human immunodeficiency virus (HIV) infection, a need for planning remains.

Objective  To evaluate prevalence of end-of-life discussions, use of advance directives, and preferences concerning end-of-life care and their relationship with patient demographics, clinical status, psychosocial variables, and practitioner characteristics among HIV-infected persons.

Design, Setting, and Patients  Cross-sectional survey of a US probability sample of 2864, which represents 231 400 adults receiving care for HIV, conducted from January 1996 to April 1997.

Main Outcome Measures  Communication with physician regarding end-of-life issues, completion of an advance directive, preference for aggressiveness of care, and willingness to tolerate future permanent adverse health states.

Results  A total of 1432 patients (50%) discussed some aspect of end-of-life care with their practitioner and 1088 (38%) completed an advance directive. Patients were more likely to complete an advance directive after a physician discussion (odds ratio [OR], 5.82; 95% confidence interval [CI], 4.50-7.52). Practitioners discussed end-of-life care less with blacks (OR, 0.57; 95% CI, 0.39-0.83) and Latinos (OR, 0.74; 95% CI, 0.55-0.98) than with whites. Women (OR, 1.39; 95% CI, 1.05-1.84) and patients with children in the household (OR, 1.53; 95% CI, 1.12-2.10) communicated the most with practitioners about end-of-life issues. Patients infected with HIV via injection drug use (OR, 0.64; 95% CI, 0.45-0.89) and those with less education communicated the least with physicians about end-of-life issues. Less denial, greater trust in one's practitioner, and longer patient-practitioner relationship were associated with more advance care planning.

Conclusions  Half of all persons infected with HIV are at risk of making end-of-life decisions without prior discussions with their health care practitioners. Blacks, Latinos, intravenous drug users, and less educated individuals need advance care planning interventions in clinical HIV programs.

Author Affiliations: Division of General Internal Medicine and Health Services Research, Department of Medicine (Drs Wenger, Liu, and Shapiro), and Departments of Pediatrics and Health Services (Dr Schuster), University of California, Los Angeles; RAND Health, Santa Monica, Calif (Drs Kanouse, Collins, Schuster, Bozzette, and Shapiro); and Department of Medicine, San Diego VA Healthcare System, and the University of California, San Diego, La Jolla (Drs Gifford and Bozzette).

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