RESUMO
BACKGROUND: Both patients and surrogate decision-makers experience decisional conflict when making a major medical treatment decision with life or death implications. The relationship between health literacy and decisional conflict while making a major medical treatment decision is not understood. OBJECTIVE: To identify the prevalence of individuals making major medical treatment decisions for themselves or someone else and to explore the relationships between decisional conflict and circumstances of the decision as well as the decision-maker. DESIGN: Two-phase survey study: in phase 1, we screened for who made a major treatment decision; in phase 2, we asked eligible respondents about their experience making the decision. PARTICIPANTS: Address-based random sample of 4000 Wisconsin residents; 1072 completed phase 1 and 464 completed phase 2. MAIN MEASURES: We asked respondents about types of decisions made, the most difficult decision made, and characteristics of the decision-maker and the decision. We included the Decisional Conflict Scale and four domains of the Health Literacy Questionnaire. Open-ended questions also allowed respondents to describe their experiences. KEY RESULTS: About 43% of respondents reported making a major medical treatment decision. Decisions about major surgery and life support were regarded as the most difficult decisions. Respondents who made the decision for a spouse/partner (ß = 6.65, p = 0.012), parent (ß = 9.27, p < 0.001), or someone else (ß = 10.7, p < 0.001) had higher decisional conflict. Respondents who reported higher ability to actively engage with healthcare providers (ß = - 5.24, p = 0.002) and to understand health information well enough to know what to do (ß = - 6.12, p = 0.001) had lower decisional conflict. CONCLUSIONS: The need to make major treatment decisions is likely to increase and making decisions on someone else's behalf appeared to be especially difficult. Improving communication to encourage patient and family engagement in the decision-making conversation, particularly for individuals with limited health literacy, may be helpful.