“Because this is my body”: patients’, families’ and health professionals’ perspectives on family-oriented informed consent in China

In China’s clinical settings, it is common for families to have the final say in informed consent when the patient has a terminal or critical illness, even when the patients are fully competent. This practice is different from the individual-based pattern in the majority of Western countries, which is grounded in respect for individual autonomy. One common justification of family-oriented informed consent (FOIC) is that Chinese patients prefer to have their families make decisions on their behalf, and this aligns with China’s familial culture, which emphasises relational autonomy. However, recent empirical findings show that FOIC is not as widely supported by Chinese patients as is often assumed. In this study, semi-structured interviews were conducted with 13 Chinese patients, 14 family caregivers, and 9 health professionals in two megacities in northern China to explore their perceptions and attitudes of FOIC. Their experiences of and attitudes towards FOIC were explored. Many family and patient participants believed FOIC is a good way to preserve hope for patients and therefore supported the approach. However, when imagining themselves as patients, many of them preferred individual-based informed consent, citing a patient’s right and autonomy as the reasons. Healthcare professionals were conflicted on FOIC. They acknowledge the impact of familial culture but also mentioned practical factors that may equally contribute to FOIC. The interviews of this study and the literature indicate there are similarities between China and the West when it comes to family involvement in decision making which may have been overlooked or downplayed. The qualitative findings with participants reveal that there are other equally significant social-economic factors such as medical violence contributing to the prevalence of FOIC. Although FOIC is widespread in China, familial culture neither fully explains the practice nor provides an adequate justification for it.