A study of end-of-life care communication and decision-making in China by exploring filial piety and medical information concealment

Abstract

Abstract Objectives This paper examines end-of-life care communication and decision-making in mainland China by exploring their connection with filial piety and the concealment of medical information from patients by their families. Methods A textual analysis was performed by utilizing descriptive information from 349 semi-structured interviews with family and professional caregivers between 2021 and 2023 in 15 Chinese provinces. In addition to a word search for filial piety and the concealment of medical information from patients by their families, this study features seven personal accounts. Results Of all the interviews, 26.9 % (303 mentions) and 11.7 % (86 mentions) contain statements about filial piety and the concealment of medical information, respectively. The interviews suggest that the autonomy of elderly patients is suspended when disclosure of medical information and decisions for end-of-life care are controlled by family members – in particular, adult children out of a strong sense of filial piety. Conclusions The authors recommend advance care planning (ACP) as a structured approach to discussing the patient’s care preferences near the end of life. In China, relational autonomy is a key to such approach, with culturally sensitive dialogues toward building a consensus among patients, relatives, and medical staff. Only then could end-of-life care place individual agency on par with family responsibility motivated by filial piety. China can look to other Asian countries and territories for family-centered ACP experiences in embracing the inseparable role of family in end-of-life care decisions to guide its implementation of the recent Shenzhen legislation and more patient-oriented practices going forward.