Adapting to a New Normal after Severe Acute Brain Injury
R. Rutz Voumard1, W. A. Kiker2, K. M. Dugger2, R. A. Engelberg2, G. D. Borasio3, J. R. Curtis2, R. J. Jox3, C. J. Creutzfeldt2 (1Lausanne ; 2Seattle US; 3Lausanne)
Severe acute brain injury (SABI) is a major cause of disability and mortality. As patients lack decision-making capacity, family members make treatment decisions based on patient’s presumed goals-of-care.
Through the perspective of family members , we aimed to (1) assess patients’ goals-of-care in the intensive care unit (ICU); (2) explore the impact of adaptation on survivors whose level of recovery was below that thought to be minimally acceptable.
Our study is an observational cohort using sequential explanatory design. Participants were family members of patients with SABI in a North America Neuro-ICU for > 2 days and with a Glasgow Coma Scale score <12. At enrollment, we asked what level of physical or cognitive recovery the patient would find acceptable. At 6 months, we assessed the level of recovery through family surveys and chart review. Families of patients whose outcome was below that considered acceptable were invited for semi-structured interviews, interpreted with content analysis.
Regarding cognitive recovery, most families (151/184, 82%) set patients’ minimally acceptable recovery at “able to think and communicate” or better. The minimally acceptable physical recovery was set at independence by most (66%). Among 170 patients with known 6-month outcome, 40% had died in hospital. One third (33%) was able to think and communicate, 13% were functionally independent, and 10% died after hospital discharge. Among survivors whose family set minimally acceptable cognitive function at “able to think and communicate” or better, 64% survived below that level; for those with minimally acceptable physical function at independence, 80% survived below that level. Qualitative analysis revealed two key themes: Families (1) struggle to adapt to a new yet uncertain normal, and (2) need more guidance with ongoing treatment decisions.
Six months after severe acute brain injury, almost two thirds of survivors survived to a state their families thought would not be acceptable. Survivors and their families need more guidance as they adapt to a new normal and struggle with persistent uncertainty.