End-of-Life Symptoms After Stroke: A Mixed Methods Study

Stroke kills 160,000 patients annually in the US, with most deaths occurring in the hospital after a decision to withhold or withdraw life-sustaining treatment (WLST). Little is known about the experience at the end-of-life of patients with stroke, some of whom are awake, and of their families.

To characterize end-of-life symptoms in patients with stroke, and to better understand the experience of these patients and their families.

In this single-center, mixed-methods retrospective quality improvement study, we included all patients hospitalized with acute stroke who died in 2022 after WLST. Basic characteristics were collected for descriptive analysis. Based on clinician progress notes, patients were considered awake with or not awake without conscious behavior at the time of WLST. Qualitative analysis of progress notes focused on symptoms documented for patients.

One-hundred-one patients with stroke died after WLST. Their median age was 73 years, 48 were women, and 34 were awake at the time of WLST, including three who participated in decision making. Median duration from WLST to death was 1 day (25th-75th percentile 0-2 days). Symptom documentation was rare and more likely to be found in patients who were awake (21/34, 62%) compared to those who were not awake (22/61, 36%). Dyspnea, pain, and restlessness were the main documented physical symptoms. Social, spiritual, and emotional needs of patients or families were less often documented.

Symptom assessment at end-of-life after stroke was limited. Prospective, systematic symptom assessment is needed to understand signs and symptoms during the end-of-life process in stroke, particularly among awake patients, so as to learn how best to address and manage symptoms in these patients.