How Consumerist Do People Want to Be? Preferred Role in Decision-Making of Individuals with HIV/AIDS.

BACKGROUND North American bioethics emphasizes autonomy, but do care recipients want an autonomous role in treatment decision-making? PARTICIPANTS We surveyed people living with HIV/AIDS (PHAs) treated at 12 clinics affiliated with the HIV Ontario Observational Database (HOOD). DESIGN The clinics distributed 809 surveys. Demographic information was merged from the HOOD database. MEASUREMENTS The survey included questions about preferred role, satisfaction with role, trust in physicians, and use and helpfulness of information sources. RESULTS The 431 responses (response rate 53.3%) reflected the group believed most consumerist (well-educated gay men). Most (87%) had high/moderate trust in physicians and were satisfied with their level of involvement in treatment decision-making. They sought information from many sources (mean 8.2), particularly health providers, but also the Internet (used by 42%, seen as somewhat helpful). Nonetheless, only one respondent (0.2%) was categorized as autonomous/consumerist; 20.9% were passive, while 78.9% wanted a shared role. CONCLUSIONS Consumerist rhetoric, with its emphasis on patient autonomy, is oversimplified. Even in this knowledgeable population, respondents wanted to understand their disease and options, but not to take on the provider's role. To our respondents, the optimal doctor-patient relationship is best characterized by a shared, trusting relationship between informed patients and expert providers.

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