Nurses' perceptions of advance care planning for stroke survivors at home in Japan

Objective: Stroke is a leading cause of death in Japan, and survivors are at a high risk of recurrence and dementia. This emphasizes the importance of advance care planning (ACP). However, ACP is underutilized among stroke survivors, particularly those living at home. Additionally, understanding regarding how Japanese nurses perceive and provide ACP support for this population is limited. This study aimed to investigate nurses' perceptions of ACP for stroke survivors living at home in Japan. Methods: Using an inductive approach, this qualitative interview study included nurses who provide long-term care to home-based stroke survivors in Japan. Braun and Clarke's thematic analysis was used. Results: A total of 10 nurses were interviewed, and four themes were determined. The nurses emphasized the urgency, necessity, and readiness for ACP among stroke survivors, considering the unique decision-making process involved. Once cognitive decline or a health crisis occurs, it is often too late for stroke survivors to actively participate in decision-making, resulting in missed opportunities. Consequently, the preferences of the patient and family were often treated as identical, rather than being considered separately. Community-based integrated care systems influence the timing and content of ACP discussions. Conclusions: Nurses frequently found it challenging to distinguish between "at the moment" and "advance" decision-making for current and future care. This may be caused by the absence of a legal framework for ongoing ACP discussions, unlike the regular multidisciplinary meetings needed for immediate care. Integrating ACP early into the stroke survivor care system may support patient-centered decision-making over family-driven choices.