Physician Approaches to Determining Goals of Stroke Care for Patients Living With Disability or Dementia: Results from the SEED Mixed-Methods Study

BACKGROUND: Despite remarkable advances in stroke management, there is a continued lack of evidence to guide care for the 1 in 3 stroke patients living with disability or dementia (PLWD). To help inform best practices, this study sought to understand how physicians approach the complex issue of determining goals of care for PLWD and what challenges they encounter. METHODS: In a mixed-methods investigation, we invited physicians involved in stroke care to participate in semistructured interviews and an online survey, enquiring into perspectives on stroke management in PLWD. Interviews were analyzed using an interpretive grounded theory approach. Qualitative findings were triangulated with results from a descriptive analysis of survey items. RESULTS: Of 82 approached physicians, 30 participated in interviews (43% from North America, 77% with ≥10 years of experience; 60% neurologists); of 200 consenting to the survey, 132 completed it (37% from North America, 51% with ≥10 years of experience, 56% neurologists). For both prestroke disability and dementia, survey respondents most frequently indicated severity of the prior condition (87% [95% CI, 80%-91%] and 89% [95% CI, 82%-93%]) and quality of life (88% [95% CI, 82%-93%] and 87% [95% CI, 80%-91%]) as either very or extremely important in decision-making. However, interviewed physicians emphasized uncertainty in evaluating these factors and forming perceptions of patient prognosis and treatment appropriateness. This was attributed to limited reliable information regarding patients' prior well-being and wishes, and paucity of PLWD-specific evidence to guide stroke management. While these ambiguous circumstances appeared to warrant a highly individualized approach to care, physicians also recognized the consequent high risk of biases affecting equity. CONCLUSIONS: Physicians encounter profound, multifaceted uncertainty in determining goals of care for PLWD, which may contribute to adverse variability in stroke management. This uncertainty may be eased by routinely documenting patients' baseline well-being and advance healthcare directives in clinical practice and promoting inclusion of PLWD in stroke research, in both contexts, considering patient and family perspectives on quality of life and favorable outcomes.