Family members' perceptions of surrogate decision-making in the intensive care unit: A systematic review

Abstract

Background: A better understanding of the perceptions of family members in making surrogate decisions for loved ones during intensive care is needed to inform the development of targeted supportive interventions.

Objective: To examine and synthesize qualitative data on family members' perceptions of surrogate decision-making in the intensive care unit.

Design: We conducted a systematic review and qualitative data synthesis. Eligible studies contained family members' quotes about surrogate decision-making experiences and perceptions in adult intensive care units, published in English or Chinese, in a peer-reviewed journal up to February 2022. Data sources included Embase, PubMed, ISI Web of Science, PsychINFO, CINAHL, Biomedical Literature Service System, China National Knowledge Infrastructure (CNKI), Wanfang Data, and VIP Journal.

Methods: The searches yielded 5974 identified articles, of which 23 studies were included. At least two different reviewers independently assessed the study quality and extracted data into a Microsoft Excel spreadsheet. A thematic synthesis was performed by classifying all text units into one of the broad themes and subsequently analyzed to inductively develop the first-, second-, and third-order themes. Six family members with experience in intensive care unit surrogate decision-making contributed to the analysis.

Results: The qualitative data synthesis resulted in five major themes. The following key new insights into family members' perceptions of surrogate decision-making in the intensive care unit were obtained: in individual systems, family members suffered from emotional distress and psychological stress; different cognitive styles emerged; some family members reshaped a new order of life in the disruption; in family systems, the family as a whole was closely connected with each other; and in medical systems families perceived asymmetry in relationships with clinicians, many factors influencing trust, the necessity for role-specific mediators and issues with operations and environments not being sufficiently humanized.

Conclusion: This qualitative synthesis showed that individuals' emotions and cognition underwent complex processes during surrogate decision-making. The family as a whole, with disparate functional states, also faced different processes and outcomes under the crisis situation. At a broader level, the decision-making process reflected society's perceptions of the medical system. Future studies should use these insights to further explore and optimize the many aspects of surrogate decision support measures for families of critically ill patients and include the measurement of outcomes after interventions at multiple layers of the individual, family, and medical systems.

Registration number: The protocol was prospectively published on International Prospective Register of Systematic Reviews (PROSPERO)-CRD42022316687.

Tweetable abstract: Families of critically ill patients undergo a complex interactional process within the individual, family, and medical systems during surrogate decision-making.

Keywords: Cognitive; Data synthesis; Emotional; Family dynamics; Intensive care unit; Medical system; Psychological; Qualitative studies; Surrogate decision-making; Systematic review.