Abstract

Introduction: There has been limited study of outcomes among surrogate decision makers who make decisions on life-sustaining treatments after severe stroke. We investigated surrogate reports of decision regret after stroke and investigated whether prior advance directives were associated with decision regret. Methods: Ischemic stroke and intracerebral hemorrhage stroke cases and their surrogate decision makers were enrolled in the Outcomes Among Surrogate Decision Makers in Stroke (OASIS). Surrogates reported the baseline presence of formal written advance care plans and the validated decision regret scale (range 0-100, higher=more regret, analyzed as “any” vs. “none” due to skewed data) in the year after stroke (post-discharge, 3-,6-, and 12-months). The association of advance care planning and decision regret was assessed with multilevel mixed effects logistic regression models, adjusted for pre-specified covariates. Results: A total of 317 surrogates for 255 stroke patients were enrolled (4/2016 to 10/2020). Patient characteristics were mean age: 74.6, Female: 51.8%, Mean NIHSS: 14.7, deceased at 3 months: 53.1%. Surrogate characteristics were mean age: 55.8, female: 76.7%, child of patient: 62.1%, and race-ethnicity (Mexican American 62.8%, non-Hispanic White 32.2%, other 5.1%). Overall, 132/317 (41.64%) surrogates reported advance care plans. Decision regret scores tended to be low overall (post-discharge mean score: 11.2, SD: 20.2, 39.1% had regret scores >0). On both unadjusted (OR 0.42, 95% CI 0.22-0.79, p=0.01) and fully adjusted regression analyses (OR 0.46, 95% CI 0.24-0.89, p=0.02, see Table), advance care plans were associated with lower odds of decision regret. Prior surrogate discussion of patient wishes without formal written advance care plans did not affect decision regret (data not shown). Conclusions: Advance care plans were protective against decision regret among surrogate decision makers in the year after stroke.

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