Decision-making in the ICU: perspectives of the substitute decision-maker

Objective: To describe the substitute decision-makers' perspectives related to decision-making in the intensive care unit (ICU) and to determine those variables associated with their overall satisfaction with decision-making. Design: Prospective, multicenter, cohort study. Setting: Six Canadian university-affiliated ICUs. Patients and participants: We distributed a validated, self-administered questionnaire assessing 21 key aspects of communication and decision-making to substitute decision-makers of ICU patients who were mechanically ventilated for more than 48 h. Intervention: None. Measurements and results: A group consisting of 1, 123 substitute decision-makers received questionnaires; 789 were returned (70.3% response rate). Respondents were most satisfied with the frequency of communication with nurses and least satisfied with the frequency of communication with physicians. In terms of overall satisfaction with decision-making, 560 (70.9%) of the respondents were either completely or very satisfied. The majority (81.2%) of respondents preferred some form of shared decision-making process. Factors contributing the most to satisfaction with decision-making included: complete satisfaction with level of health care the patient received, completeness of information received, and feeling supported through the decision-making process. Satisfaction with decision-making varied significantly across sites. Conclusions: In this multicenter observational study, we found that most substitute decision-makers for ICU patients wanted to share decision-making responsibility with physicians and that, overall, they were satisfied with their decision-making experience. Adequate communication, feeling supported, and achieving the appropriate level of care for their family member were key determinants of satisfaction with decision-making in the ICU.