Background: Stroke kills 160,000 patients every year in the US. Most patients who die with stroke do so in hospital. Little is known about the acute dying process or experience of patients with stroke and their families. Objectives: The goal of this quality improvement project is to better understand the end-of-life process in patients dying with stroke at our institution, focusing on patients who were awake at end of life. Methods: Of patients admitted to our academic medical center in 2022 with stroke who died, we collected basic characteristics and information about reasoning behind WLST and the patient’s condition immediately after WLST. Among those who showed signs of wakefulness (tracking examiner or better), we searched the chart for any documentation of broadly defined goals of care conversations and patient or family symptoms assessed at end of life. Results: Of 525 patients, 118 patients (22.5%) died in hospital. Basic characteristics are listed in Table 1. WLST occurred in 99 patients (84% of decedents), of whom 33 (27.8%) showed signs of wakefulness at time of WLST. None of the patients participated in conversations, and a documented advance directive was followed in 5 (15%). After WLST, patient symptoms most frequently documented by clinicians included dyspnea (n=29), pain (n=18), and restlessness (n=12), but no non-physical symptoms (see Table 2). Family symptoms were not documented. Discussion: At least one quarter of hospital decedents after stroke showed signs of wakefulness, with patient-centered symptoms rarely documented. A standardized, systematic symptom assessment is needed to truly understand signs and symptoms during end-of life for patients with stroke.
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