Abstract
Background: Patients with severe acute brain injury (SABI) lack decision-making capacity, calling on families and clinicians to make goal-concordant decisions, aligning treatment with patient's presumed goals-of-care. Using the family perspective, this study aimed to (1) compare patient's goals-of-care with the care they were receiving in the acute setting, (2) identify patient and family characteristics associated with goal-concordant care, and (3) assess goals-of-care 6 months after SABI. Methods: Our cohort included patients with SABI in our Neuro-ICU and a Glasgow Coma Scale Score <12 after day 2. Socio-demographic and clinical characteristics were collected through surveys and chart review. At enrollment and again at 6 months, each family was asked if the patient would prefer medical care focused on extending life vs. care focused on comfort and quality of life, and what care the patient is currently receiving. We used multivariate regression to examine the characteristics associated with (a) prioritized goals (comfort/extending life/unsure) and (b) goal concordance. Results: Among 214 patients, families reported patients' goals-of-care to be extending life in 118 cases (55%), comfort in 71 (33%), and unsure for 25 (12%), while care received focused on extending life in 165 cases (77%), on comfort in 23 (11%) and families were unsure in 16 (7%). In a nominal regression model, prioritizing comfort over extending life was significantly associated with being non-Hispanic White and having worse clinical severity. Most patients who prioritized extending life were receiving family-reported goal-concordant care (88%, 104/118), while most of those who prioritized comfort were receiving goal-discordant care (73%, 52/71). The only independent association for goal concordance was having a presumed goal of extending life at enrollment (OR 23.62, 95% CI 10.19-54.77). Among survivors at 6 months, 1 in 4 family members were unsure about the patient's goals-of-care. Conclusion: A substantial proportion of patients are receiving unwanted aggressive care in the acute setting after SABI. In the first days, such aggressive care might be justified by prognostic uncertainty. The high rate of families unsure of patient's goals-of-care at 6 months suggests an important need for periodic re-evaluation of prognosis and goals-of-care in the post-acute setting.