Abstract
In China’s clinical settings, it is common for families to make decisions about the information and treatments that a patient will receive. This practice or model is referred to as ‘family-oriented informed consent’. It differs from the ‘individual model’ practiced in many Western countries. A standard explanation for this difference is based on perceived differences between Chinese and Western cultures. On this view it is argued that family-oriented informed consent is most compatible with the strong familial culture in China, while patient-centred informed consent reflects Western individualism.
This study aims to understand how and why families are involved in informed consent in China, and to critically assess the arguments for and against this involvement. It does this through a sociological investigation and an ethical analysis. Semi-structured, in-depth interviews were conducted with 13 patients, 14 family caregivers, and nine health professionals in Tianjin and Beijing, two mega cities in China. A thematic analysis approach was used to analyse the empirical material. The findings confirm the prevalence of the family-oriented practice. For family participants, two reasons were most often mentioned to support family-oriented informed consent: “reducing harms” and “increasing benefits”. Most patient participants preferred to make decisions on their own. Only a small number of patient participants indicated a preference for family-oriented model. They mainly referred to their reliance on the family for funding and care. As for medical professional participants, most of them disapproved of the family-oriented model but felt too powerless to act on the side of patients in face of family’s requirement as the decision makers.
On the basis of these findings, I argue that family-oriented informed consent is empirically groundless and ethically wrong, and that ‘patient-oriented informed consent’ should be adopted instead. Besides familial culture, the findings indicated at least four other factors explaining the family-oriented model, including doctor-patient mistrust, insufficient public funding to healthcare, the conflicting legal stipulations, and poor communication. Moreover, the argument that the practice benefits patients is specious, as in many ways it can be more harmful to patients. Argument based on cultural differences is also dubious because it incorrectly assumes that family-oriented pattern only exists in China, and that Chinese people do not support individual autonomy. Having shown the problems with family-oriented pattern, I move to argue in support of ‘patient-centred model’. On this model, patients should have the authority in informed consent, and doctors should be sensitive to patients’ requirement about family involvement. This model is both contextually sensitive and morally justifiable to China’s clinical context because it is in line with most Chinese patients’ preference for self-determination and is beneficial to patients. To make this possible, it is important to specify patient’s individual right to informed consent in law and to stipulate medical professionals’ legal duty to respect patient’s autonomy. Improvement in doctor-patient communication and more government funding in the healthcare sector are equally important means for a better implementation.