Maintaining personhood within family life: a qualitative study of home-based palliative care for patients with advanced cancer in urban China

BACKGROUND: Globally, several patients prefer home as the place of death, making home-based palliative care (HBPC) an important component of holistic palliative care delivery. In China, where many patients receive palliative care at home, HBPC is constrained by limited resources, fragmented services and death-avoidant cultural norms. This study aimed to explore how urban patients with advanced cancer experience HBPC within family and cultural contexts in China. METHODS: We conducted a focused ethnographic study in Beijing, China. Twelve urban patients with advanced cancer receiving HBPC were purposively recruited via two outpatient departments and four community health centers and all participated in the study. Data were generated through semi-structured interviews, participant observation, and field notes. Data were analyzed using content analysis with iterative coding and constant comparison to refine themes; team discussion and analytic memos were used to enhance rigor. RESULTS: Content analysis generated four interrelated themes: (1) Being the focus of the family - patients sought to regain visibility in family life and embed care in daily routines; (2) Guarding my boundaries - patients defined personal limits, managed social exposure and articulated autonomy to preserve dignity; (3) The final safety net - patients sought external care and institutional support as illness progressed to enhance comfort and reduce family burden; (4) Preserving the value of life - patients affirmed meaning by reflecting on their life course, staying connected with family and aspiring to be remembered. CONCLUSIONS: For urban Chinese patients with advanced cancer, HBPC is experienced as a process of maintaining personhood within intersecting domains of care, identity and family ethics. Care should address not only symptom relief, but also dignity, meaning and culturally embedded family relationships.