Communication of preferences for care among human immunodeficiency virus-infected patients. Barriers to informed decisions?

OBJECTIVE: To examine the way patients with serious, progressive illnesses communicate their care preferences to their physician. DESIGN: An observational, cross-sectional survey of 1031 clients with acquired immunodeficiency syndrome (AIDS) or symptomatic human immunodeficiency virus disease. Self-report of communication was assessed in 861 clients who stated a treatment preference focused on extending life or focused on comfort even if it shortened life. SETTING: The Robert Wood Johnson AIDS Health Services Program in 9 US cities. PARTICIPANTS: Eight hundred sixty-one of 1031 clients recruited to the AIDS Health Services Program. RESULTS: Eight hundred sixty-one subjects expressed a preferred treatment approach; however, only 35.8% had spoken to their physician about their preferred treatment. Black clients were half as likely (odds ratio, 0.49; confidence interval, 0.29-0.85) to have discussed their preferred treatment approach even after adjustment for age, function, education, income, and other covariates. Black clients were half as likely to prefer an approach to care that focused only on comfort (odds ratio, 0.51; 95% confidence interval, 0.34-0.76). Clients with AIDS who were symptomatic daily, college educated, and more functionally impaired were more likely to have discussed a preferred treatment approach with their physician. CONCLUSIONS: Most persons with symptomatic human immunodeficiency virus infection have not discussed their preferred treatment approach with a physician. This disparity is greater for blacks, who were less likely to want a palliative treatment approach.