Food, toys, and love: pediatric palliative care.

P ediatric palliative care is a new interdisciplinary frontier in the comprehensive care of children. While children with life-threatening and life-limiting conditions have always been part of the health care system, it is only now that an integrated vision toward their care is emerging. The underlying principles and ethics of palliative care are universal across the life span. However, as in all specialties, children bring with them unique issues and dilemmas. A child or adolescent with a life-threatening or lifelimiting condition throws an assumed sequence out of order. A time of role reversal is expected, when children will care for dying parents. When parents instead find themselves watching their child face the threat of death, imminent or not, any sense of order is shattered. Even before the child has become a differentiated individual through a natural developmental sequence, that child is wrested away. There is little preparation for separation by death when a psychological separation has not yet been effected. The adolescent who is beginning to negotiate an independent existence often seems especially hard to face when that “moving forward” is irreversibly halted, or at least disrupted. The critical importance of this new field was recently highlighted in the Institute of Medicine Report: When Children Die: Improving Palliative and End-of-Life Care for Children and their Families. Previously, several powerful publications had already set the stage for this seminal report: a thematic issue of the Journal of Palliative Care (When Children Have to Die: Pediatric Palliative Care), a powerful statement by the American Academy of Pediatrics, the findings of two comprehensive British reports on children and young people with life-threatening and terminal conditions, and two earlier Institute of Medicine studies. The Institute of Medicine Report in 2003 summarized the current evidence base of the field as follows: