Important Elements of Quality Home End-of-Life Care in China

Importance: The efficacy of home end-of-life care in enhancing the quality of life for terminally ill patients and families has been well documented. While previous studies have explored perspectives on quality home palliative care and end-of-life care in several countries, limited knowledge exists regarding its specific components in the Chinese context. Objective: To explore the core elements that constitute quality home end-of-life care in China. Design, Setting, and Participants: This qualitative study integrated semistructured interviews, participant observation, and document and record collection. Data were collected from March to November 2024 in 4 health care organizations with hospice wards in Beijing. Purposive sampling was used to recruit terminally ill patients and families who had received home end-of-life care, as well as professionals who had provided care. All data were analyzed using thematic analysis. Main Outcomes and Measures: Core elements of quality home end-of-life care in China. Results: A total of 39 participants were included: 12 patients (5 [41.7%] female and 7 [58.3%] male), 4 of whom were interviewed (mean [SD] age, 74 [3.5] years); 13 family members (6 [46.2%] female and 7 [53.8%] male; 6 interviewed, primarily spouses [mean (SD) age, 69 (6) years] and adult children [mean (SD) age, 41 (5.3) years]); and 14 professionals (mean [SD] age, 42 [7.8] years; 11 [78.6%] female and 3 [21.4%] male). Observations and interviews were conducted mainly during 19 home visits. Four themes and 10 subthemes were identified: (1) preliminary basis for home-based services, (2) communication strategies and practical support, (3) long-term stable care relationships, and (4) fulfilling end-of-life preferences in practice. These elements reflected a dynamic progression of trust relationships between patients, families, and professionals. While some elements were represented in previous studies, we found some unique aspects related to mutual efforts on both sides of the service and professionals' approach to the inconsistent needs of patients and families. Conclusions and Relevance: In this qualitative study, quality home end-of-life care in China can be described as a dynamic process of building and maintaining trust relationships between professionals, patients, and families. The findings provide a distinct understanding and may serve as a reference for developing a quality assessment framework for home end-of-life care. Future research should further develop this framework and evaluate effective strategies for delivering quality home end-of-life care within distinctive cultural and policy contexts.