Abstract
OBJECTIVES: Treatment decisions following severe acute brain injury need to consider patients' goals-of-care and long-term outcomes. Using family members as respondents, we aimed to assess patients' goals-of-care in the ICU and explore the impact of adaptation on survivors who did not reach the level of recovery initially considered acceptable. DESIGN: Prospective, observational, mixed-methods cohort study. SETTING: Comprehensive stroke and level 1 trauma center in Pacific Northwest United States. PARTICIPANTS: Family members of patients with severe acute brain injury in an ICU for greater than 2 days and Glasgow Coma Scale score less than 12. MEASUREMENTS AND MAIN RESULTS: At enrollment, we asked what level of physical and cognitive recovery the patient would find acceptable. At 6 months, we assessed level of recovery through family surveys and chart review. Families of patients whose outcome was below that considered acceptable were invited for semistructured interviews, examined with content analysis. RESULTS: For 184 patients, most family members set patients' minimally acceptable cognitive recovery at "able to think and communicate" or better (82%) and physical recovery at independence or better (66%). Among 170 patients with known 6-month outcome, 40% had died in hospital. Of 102 survivors, 33% were able to think and communicate, 13% were independent, and 10% died after discharge. Among survivors whose family member had set minimally acceptable cognitive function at "able to think and communicate," 64% survived below that level; for those with minimally acceptable physical function at independence, 80% survived below that. Qualitative analysis revealed two key themes: families struggled to adapt to a new, yet uncertain, normal and asked for support and guidance with ongoing treatment decisions. CONCLUSIONS AND RELEVANCE: Six months after severe acute brain injury, most patients survived to a state their families initially thought would not be acceptable. Survivors and their families need more support and guidance as they adapt to a new normal and struggle with persistent uncertainty.