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

Background: Surrogate decision makers of seriously ill patients are frequently asked to make healthcare decisions without evidence-based decision support.
Aims: To 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.
Methods: A 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.
Results: Three salient themes were identified: (1) limited preparation, (2) decisional and emotional burden, and (3) content and features of a decision support intervention.
Conclusions: Surrogate 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.
(Copyright © 2015 Elsevier Inc. All rights reserved.)