Leveraging the lived experience of surrogate decision makers of the seriously ill to develop a decision support intervention

BackgroundSurrogate decision makers of seriously ill patients are frequently asked to make healthcare decisions without evidence-based decision support.AimsTo describe the lived experiences of surrogate decision makers who have made advance care decisions and identify relevant features of a decision support intervention from their perspectives.MethodsA convenience sample of surrogate decision makers (n = 10) of seriously ill patients discharged to an extended care facility within the past 6 months participated in focus group discussions. Data were analyzed using content analysis.ResultsThree salient themes were identified: (1) limited preparation, (2) decisional and emotional burden, and (3) content and features of a decision support intervention.ConclusionsSurrogate decision makers of the seriously ill are not prepared for their new role, and experience decisional and emotional burden. Effective decision support interventions must address the decisional and emotional needs of surrogate decision makers to enhance the quality of their decisions.