Description:
Introduction: Stroke is a leading cause of death and disability in the United States. In acute stroke, patients are often unable to communicate goals of care. Many survivors of stroke have high morbidity. Communication deficits resulting from stroke often complicate the assessment of patient wishes, particularly in severely disabling strokes. Many advance care documents are vague and not helpful in stroke settings, and many patients have not communicated their wishes. Methods: A survey was developed and distributed in hypertension, diabetes, and stroke clinics to test the hypothesis that patients generally desire fewer heroic measures in a severely disabling stroke compared to a milder stroke. The survey included demographics, perceptions of stroke risk, and posed three stroke scenarios to assess care measures preferred in each setting. Results: We collected 101 surveys; 59% from patients with stroke; 50% were male. Strong majorities had not had discussions with doctors about advance care plans. Nearly a third had not had these discussions with family. Eighty-nine percent indicated good quality was more valued than duration of life. Generally, respondents would accept invasive therapies in mild stroke scenarios compared to severe stroke scenarios, consistent across all clinics. Tracheostomy was the least desired intervention; although about 40% indicated they would opt for any measure of heroic treatment, regardless of stroke severity. Conclusions: Stroke causes significant morbidity, and many individuals have not communicated or even considered their wishes should they face difficult decisions in stroke. We found a wide range of desires in our severe stroke scenario, with no reliable factors to predict those who would opt for heroic measures. We assert that advance care planning specific to stroke among patients at highest risk for stroke would define each individual’s preferences and guide clinicians to provide appropriate care consistent with the patient’s values.