The Harms of Family-Oriented Informed Consent in Clinical Practice in Two Megacities in Northern China: a Sociological and Ethical Study

Abstract In clinical practice in China, a family-oriented approach to informed consent is widely used. Under this approach, families may control whether patients are provided with information and make medical decisions for the patient without asking what they would want. One of the main justifications is its purported benefits for patients. Recent studies have begun to expose ways in which this approach may be more harmful than beneficial to patients. Integrating empirical investigation with normative analysis, this study examines the experienced and perceived benefits and harms of family-oriented informed consent by Chinese patients, family caregivers, and healthcare professionals from two megacities. Semi-structured and in-depth interviews were undertaken with 13 patients, 14 family caregivers, and 9 medical professionals in Tianjin and Beijing, two megacities in northern China. The findings of these interviews were thematically analysed. When taking the perspective of a caregiver, most of the participants across the three groups described the family-oriented approach as more beneficial to patients. However, when thinking of themselves as the patient, most participants believed that it would be better for them if they were provided with information and given an opportunity to decide. The interviews revealed some significant harms of family-orientated informed consent, such as delay in treatment, psychological abandonment, and suppression of self-management. This study challenges the widespread assumptions about the benefits of family-oriented informed consent. Some of the harms of this approach are unveiled and discussed. Two opposing attitudes toward this approach to informed consent, derived from the contrasting views of family members and patients, uncover the potential flaws in the beneficence-based justification for this practice.