Not all patients want to participate in decision making - A national study of public preferences

BACKGROUND: The Institute of Medicine calls for physicians to engage patients in making clinical decisions, but not every patient may want the same level of participation. OBJECTIVES: 1) To assess public preferences for participation in decision making in a representative sample of the U. S. population. 2) To understand how demographic variables and health status influence people's preferences for participation in decision making. DESIGN AND PARTICIPANTS: A population-based survey of a fully representative sample of English-speaking adults was conducted in concert with the 2002 General Social Survey (N = 2,765). Respondents expressed preferences ranging from patient-directed to physician-directed styles on each of 3 aspects of decision making (seeking information, discussing options, making the final decision). Logistic regression was used to assess the relationships of demographic variables and health status to preferences. MAIN RESULTS: Nearly all respondents (96%) preferred to be offered choices and to be asked their opinions. In contrast, half of the respondents (52%) preferred to leave final decisions to their physicians and 44% preferred to rely on physicians for medical knowledge rather than seeking out information themselves. Women, more educated, and healthier people were more likely to prefer an active role in decision making. African-American and Hispanic respondents were more likely to prefer that physicians make the decisions. Preferences for an active role increased with age up to 45 years, but then declined. CONCLUSION: This population-based study demonstrates that people vary substantially in their preferences for participation in decision making. Physicians and health care organizations should not assume that patients wish to participate in clinical decision making, but must assess individual patient preferences and tailor care accordingly.