Autonomy and AIDS: Preferred role in decision making among individuals registered with an HIV/AIDS observational database.

摘要

Respect for autonomy underpins North American bioethics. This study examines empiric the preferred role of people living with HIV/AIDS, a population widely believed to be both knowledgeable about their disease and actively involved in making treatment decisions.; People with HIV/AIDS being treated at nine specialty care clinics and three primary care practices affiliated with the HIV Ontario Observational Database (HOOD) were surveyed. Participation required previous consent to participate in HOOD-related research, ability to read and complete a questionnaire in English, and a clinic visit during the study period. The clinics distributed 809 surveys between July 1999 and February 2000 and obtained 431 responses (53.3%). The survey included questions about preferred role in treatment decision making, satisfaction with role played, trust in physicians, use of different sources of information and the perceived helpfulness of each, and health status. Demographic information was obtained by anonymous data merger with the HOOD database.; Only one respondent (0.2%) was categorized as autonomous/consumerist; 20.9% were passive while 78.9% wanted a shared role. Respondents were mostly well-educated, white men who contracted HIV/AIDS through sexual contact with other men. Mean age was 43.7 (SD +/- 8.6) years. Most (87%) had high to moderate trust in physicians, and were satisfied or very satisfied with their level of involvement in treatment decision making. Although many sources of information were used (mean 8.2), the most commonly-cited sources were health providers; these were also rated highest in helpfulness. The Internet was used by 42% of respondents, ranked eleventh as a source of information, and seen as somewhat helpful.; Consumerist rhetoric, with its emphasis on patient autonomy, is over-simplified. Even in this activist population, respondents wanted to understand their disease and options, but not to take on the provider's role. Our results suggest that the doctor-patient relationship is best characterized by a shared relationship in which doctors bring their expertise to making treatment choices and in which patients are encouraged to participate in decision making, especially in those areas that affect their quality of life. These conclusions emphasize the need for a new definition of what it means to be an autonomous patient.