Culturally contextualised advance care planning decision-support needs among patients receiving maintenance haemodialysis in mainland China: a qualitative study

This is the authors' abstract. We don't add key points for this paper.

Patients with end-stage kidney disease (ESKD) receiving maintenance haemodialysis face complex future care decisions, including haemodialysis continuation, resuscitation and end-of-life care. In mainland China, advance care planning is not routinely embedded in haemodialysis practice. This study explored how these patients understand and experience advance care planning-related decision-support needs. A descriptive qualitative study was conducted in the haemodialysis unit of a tertiary hospital in Sichuan Province, China. Thirteen adults with ESKD receiving maintenance haemodialysis were recruited by purposive sampling. Semi-structured interviews were audio-recorded, transcribed verbatim and analysed using Colaizzi’s seven-step procedure within a framework-informed inductive approach. The Ottawa Decision Support Framework was used as a sensitising framework rather than a fixed coding structure. Three interrelated themes were generated. First, advance care planning was not yet recognised as a concrete future care decision. Participants had limited prior understanding of advance care planning, often associated it with treatment withdrawal or death, and needed clearer explanations of disease progression, resuscitation, haemodialysis continuation and future care options. Second, dignity was understood through comfort, privacy and family responsibility. Participants preferred comfort-oriented care when recovery was unlikely, valued a peaceful care environment and linked dignity with avoiding unnecessary burden on family members. Third, advance care planning decision support needed to be family-inclusive, clinician-facilitated and paced to patient readiness. Family involvement provided emotional security and decision partnership, while respectful communication from healthcare professionals helped patients move from avoidance to conditional engagement. Patients with ESKD receiving maintenance haemodialysis in mainland China need decision support beyond general information provision. Advance care planning support should translate future care decisions into haemodialysis-specific contexts, address dignity in relation to comfort and family responsibility, and create opportunities for patients to express preferences within family-centred decision-making. Nurse-facilitated, team-based and culturally adapted decision aids may help integrate advance care planning into routine haemodialysis care. Not applicable.