persons, as persons with a developing capacity for rationality, autonomy, and participation in health-care decision making” (AAP, 1995). At any given age, however, they may possess none, some, or all of the capacities necessary to participate in their own health care.
Children are extremely resilient and may rebound from multiple medical crises that would ordinarily be life-ending in an adult. Further, the ability of clinicians to predict timing of death is notoriously poor in the adult population and even worse when it comes to children, particularly those living with chronic illness for many years prior to death. Families and provider teams may be faced with waxing and waning palliative care needs and recurrent conversations over time about the transition to palliative care; this type of need does not fit neatly into the medical, psychological, spiritual, and economic framework established for adult end-of-life care.
Despite current practices to the contrary, extrapolation of adult-derived pharmacokinetic and pharmacodynamic data is often inappropriate and sometimes dangerous for children. Although recent government regulations may change the licensing requirements for new drugs to require pediatric labeling and indications, the rarity of death in childhood still mandates large and often cumbersome multi-institutional trials of symptom control measures for dying children.
Discussions and decisions surrounding end-of-life care have not consistently included the family and the child. In pediatric palliative care, only the individual child and family can determine what is best for them, based on their particular values and life experiences (Liben, 1996). Children need to participate in such discussions and decisions to the fullest extent possible, in order to achieve mastery and control over their own dying. Children have grief work to do and goodbyes to say, just as adults. Inadequate professional training in the ethical, moral, and legal implications of including children in their own care has the potential to rob children of their autonomy and to violate the concept of truth telling in medicine (Bartholome, 1993).
Finally, the death of a child is one of the most significant psychological stressors a person may ever face. The bereavement literature supports the notion that the risk of prolonged, complicated grief or pathological bereavement is substantial for the parents of a child who has died.
This chapter explores the issues in eight major areas:
education of providers,
education of children and families about the dying process,
special issues in communication: adolescents and assent,
delays in the initiation of palliative care for children,
fragmentation of palliative care services,