Managing Competing Interests Between Appointed Surrogates and Extended Family in End-of-Life Care

This Ethics Rounds article brings together perspectives from a clinical ethicist, 2 resident physicians in pediatrics, and a social worker on a case involving a terminally ill, intubated, and sedated young adult patient whose health care proxy, extended family, and health care team disagree on the course of her care. Although the proxy, the patient's adult sister, seems to agree in principle with the health care team's recommendation to withdraw life-sustaining treatment, she is unwilling to consent to withdrawal due to perceived pressure from her extended family. From an ethics perspective, we discuss the concept of the "marginalized decision-maker" and how to blend the "best interests" approach from pediatric medicine with the "substituted judgment" standard applied in adult medicine when making decisions for incapacitated young adult patients. From a clinical perspective, we explore features of this case that may contribute to feelings of moral distress within the medical team, identify best practices for leading team and family meetings to avoid values imposition and promote shared decision-making, and argue for the importance of training physicians in clinical ethics and reflective skills to improve the quality of patient care and reduce experiences of moral distress in the workplace. Finally, we explore the role that family dynamics, families' culture and values, and past experiences in the health care system can play in shared decision-making conversations.