Family Surrogate Decision-making in Chronic Critical Illness: A Qualitative Analysis

Background Caring for an adult with chronic critical illness is a difficult undertaking. Family surrogates are tasked with decision-making on behalf of their loved one, particularly during acute-on-chronic illness episodes. Critical care nurses are well positioned and well qualified to facilitate this process. Objectives To explore family surrogate decision-making for people with chronic critical illness. Methods In this qualitative study, interviews were conducted with family surrogates (n = 7) as part of a larger descriptive, longitudinal study (N = 264). Content analyses were guided by Miles and colleagues' methods of data analysis. Results Family surrogates serving as decision makers for a spouse or another adult loved one were mostly female. Although decision-making was often described as "frustrating," most surrogates reported that they were "comfortable" with this role. Major decision-making themes were "communication as key in decision-making," "impact of past experiences," and "difficulties and coping." Advice from family and friends, health care providers (such as nurses), and faith or spirituality were significant resources for coping with decision-making challenges. Conclusions Results support recent recommendations of the National Academy of Medicine that endorsed shared decision-making. Data also support development of more effective team communication and decision support strategies, particularly addressing consistency and continuity. Critical care nurses can use their expertise to positively influence these outcomes.