Advance Care Planning and End of Life

The finality of death can be disruptive, destabilizing, and debilitating to the person told that they will prematurely succumb, but it also affects everyone in that individual’s support network. This reality is especially prescient when the individual dying is a child. Pediatric advanced care planning is emotionally impactful, and a practice area very relevant to the ethics community practicing in pediatric care centers. It is also complex because the parents, the medical care team, and psychological development governs the child’s ability to participate. The challenges around planning for the death of a child have caused barriers in communication between careproviders and families. It has led to moral distress in clinicians, dissatisfaction in the parents, and avoidance of that portion of the arc of care. Also, it is a driver of discord in the treatment care team. There is no way to make the loss of a child feel positive or pleasant. But there are methods to make that process focus on dignity, inclusivity, collaboration, and respect. This issue of the Journal of Pediatric Ethics reviews perspectives that encompass end-of-life planning and clinical scenarios, from birth to young adulthood. There are the perspectives of medical providers, clinical ethicists, and parents. Thus, this is an exploration of the arc of a painful process, which for some is unavoidable. It intends to serve as a starting point for continued research, commentary, and active reflection.