End-of-life discussions and preferences among persons with HIV

Context Deficits in advance care planning leave many patients and their phy sicians unprepared for decisions about end-of-life care. Even though the pr ognosis has im; proved 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 relation ship with patient demographics, clinical status, psychosocial variables, an d practitioner characteristics among HIV-infected persons. Design, Setting, and Patients Cross-sectional survey of a US probability sa mple of 2864, which represents 231 400 adults receiving care for HIV, condu cted from January 1996 to April 1997. Main Outcome Measures Communication with physician regarding end-of-life is sues, 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 physic ian 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 whit es. Women (OR, 1.39; 95% CI, 1.05-1.84) and patients with children in the h ousehold (OR, 1.53; 95% CI, 1.12-2.10) communicated the most with practitio ners about end-of-life issues. Patients infected with HIV via injection dru g use (OR, 0.64; 95% CI, 0.45-0.89) and those with less education communica ted the least with physicians about end-of-life issues. Less denial, greate r 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 en d-of-life decisions without prior discussions with their health care practi tioners. Blacks, Latinos, intravenous drug users, and less educated individ uals need advance care planning interventions in clinical HIV programs.