Lessons Learned Through the Voices of Surrogate Decision Makers of Patients With Severe Acute Brain Injury Years After Hospitalization

Background and PurposeSevere acute brain injury (SABI) often occurs suddenly, profoundly impacting patients and their families. During the ICU stay, critical treatment decisions have to be made in the setting of prognostic uncertainty. We aimed to better understand the experiences of surrogate decision makers (SDMs) specifically regarding longer-term treatment decisions such as tracheostomy, gastrostomy, and withdrawal of life-sustaining treatment (WLST).MethodsWe interviewed SDMs of adult patients admitted between 2021 and 2022 with SABI (traumatic brain injury or stroke) who were initially mechanically ventilated and either underwent tracheostomy or WLST after 7 days. We developed an interview guide in collaboration with five SDMs for former patients to explore the ICU experience and reflections on treatment decisions. SDMs were contacted 12-36 months post-SABI. Common themes were identified after a review of transcripts by six authors.ResultsAfter contacting the primary caregivers for 18 eligible patients, six SDMs consented to participate. Interviewees included SDMs to four patients who underwent tracheostomy and two who died after a decision to pursue WLST; median time from hospital discharge to interview was 29 months. SDMs expressed sources of struggle in the decision-making process including the novelty of the role, perceived time pressure to make decisions, and prognostic uncertainty. Post-acute discharge needs were also unanticipated and overwhelming.ConclusionThe reflections from SDMs highlighted the significant multifaceted difficulties experienced by SDMs of patients with SABI. More research is needed to understand how to best support those who support our patients.