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.
Highlights
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
When patients are admitted to the hospital with severe acute brain injury (SABI), which includes stroke, traumatic brain injury and hypoxic-ischemic encephalopathy after cardiac arrest, they typically lack decisional capacity and rarely have had their goals-of-care previously documented
Prognostic uncertainty typically persists for months after SABI and can challenge ongoing decisions in the acute care and post-acute care setting [12]
Summary
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. When patients are admitted to the hospital with severe acute brain injury (SABI), which includes stroke, traumatic brain injury and hypoxic-ischemic encephalopathy after cardiac arrest, they typically lack decisional capacity and rarely have had their goals-of-care previously documented. Their family members or other surrogate decision-makers are tasked to work with clinicians to make treatment decisions based on the patients’ presumed goals [6]. Prognostic uncertainty typically persists for months after SABI and can challenge ongoing decisions in the acute care and post-acute care setting [12]
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