Do people want to be autonomous patients? Preferred roles in treatment decision‐making in several patient populations

BACKGROUND: What role do people want to play in treatment decision-making (DM)? OBJECTIVE: Examine the role patients indicate they would prefer in making treatment decisions across multiple clinical settings in Ontario, Canada. DESIGN: Secondary analysis of a series of survey/interview-based studies measuring preferred role, conducted in 12 different populations. SETTING AND PARTICIPANTS: Respondents were outpatients, largely but not entirely attending outpatient clinics in large teaching hospitals in urban settings in the Province of Ontario, Canada. The subgroups and sample sizes were: breast cancer (202), prostate disease (202), fractures (202), continence (46), orthopaedic (111), rheumatology (56), multiple sclerosis (22), HIV/AIDS (431), infertility (454), benign prostatic hyperplasia (678) and cardiac disease (300), plus 50 healthy nursing students (for scale validation). MEASUREMENTS: All studies categorized preferred role using the Problem-Solving Decision-Making (PSDM) scale with one or both of the Current Health condition and Chest Pain vignettes. RESULTS: Few respondents preferred an autonomous role (1.2% for the current health condition vignette and 0.7% for the chest pain vignette); most preferred shared DM (77.8% current health condition; 65.1% chest pain) or a passive role (20.3% current health condition; 34.1% chest pain). Familiarity with a clinical condition increases desire for a shared (as opposed to passive) role. Preferences for passive vs. shared roles varied across settings; older and less educated individuals were most likely to prefer passive roles. CONCLUSIONS: Despite consumerist rhetoric among some bioethicists, very few respondents wish an autonomous role. Most wish to share DM with their providers.