Shared Decision Making and End-of-Life Discussions in the PICU

Abstract

Communication with parents about end-of-life decisions is one of the most challenging but crucial aspects of a pediatric intensivist’s role. Making decisions for dying patients was physically, emotionally and morally easier when patients were less complex and less dependent upon technology, and when physicians felt justified in making unilateral decisions. Now these decisions are more complex. They require parents to comprehend complicated medical scenarios. They also require the incorporation of the family’s values and goals through the shared decision making process. When these conversations go poorly, it can lead to compromised care for the child and increased moral distress among all involved. This chapter will describe these issues, in addition to pieces from a large body of research suggesting that such conversations require skills that can be taught and can be learned. Healthcare providers have a duty to hone these skills. In doing so, they will improve the experience of parents in the death of their child, decrease moral distress and burn-out within the PICU, and most importantly, improve the care provided to our patients.