Family Perceptions of Quality of End-of-Life Care in Stroke

Background: Most end-of-life decisions after stroke are made by a surrogate decision maker, yet there has been limited study of surrogate assessment of the quality of end-of-life stroke care. Objective: To assess surrogate perceptions of quality of end-of-life care (QEOLC) in stroke and explore factors associated with quality. Design: Cross-sectional analysis of interviewer-administered survey. Settings/subjects: Surrogate decision makers for deceased stroke patients in a population-based study. Measurements: The primary outcome was the validated 10-item family version of the QEOLC scale. The univariate association between prespecified patient and surrogate factors and dichotomized QEOLC score (high: 8–10, low: 0–7) was explored with logistic regression fit using generalized estimating equations. Results: Seventy-nine surrogates for 66 deceased stroke cases were enrolled (median patient age: 76, female patient: 53%, Mexican American patient: 59%, median time from stroke to death: seven days, median surrogate age: 59, and female surrogate: 72%). The overall QEOLC was generally high (median 8.3, quartiles 6.1, 9.6) although several individual items had a high proportion (∼30%–50%) of surrogates who felt that the questions did not apply to the patient's situation. No hypothesized factors were associated with QEOLC score, including demographics, stroke type, location/timing of death, advance directives, health literacy, or understanding of patient wishes. Conclusions: Surrogates reported generally high QEOLC. Although this finding is encouraging, modifications to the QEOLC may be needed in stroke as some surrogates were unable to provide a valid response for certain items.