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

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.

与家长就临终决策进行沟通是儿科重症监护医生角色中最具挑战性但又至关重要的方面之一。当患者病情不那么复杂且对技术的依赖程度较低，以及医生觉得单方面做决策合理时，为濒死患者做决策在身体、情感和道德层面都更容易。如今这些决策更加复杂。它们要求家长理解复杂的医疗情况，还要求通过共同决策过程纳入家庭的价值观和目标。当这些谈话不顺利时，可能会导致对患儿的护理受到影响，并增加所有相关人员的道德困扰。本章将描述这些问题，此外，大量研究表明此类谈话需要可以传授和学习的技能。医疗服务提供者有责任磨练这些技能。这样做，他们将改善家长在孩子死亡过程中的体验，减少儿科重症监护病房（PICU）内的道德困扰和职业倦怠，最重要的是，改善对我们患者提供的护理。