be offered in conjunction with national meetings of organizations that care for children with life-threatening illness (e.g., COG, AAP, and the American Society of Pediatric Hematology/Oncology). For adult hospice providers, pediatric end-of-life curricula should be offered at national meetings of the relevant professions. Collaboration between programs and interested individuals dedicated to pediatric palliative care (e.g., members of the American Association of Hospice and Palliative Medicine, the National Hospice and Palliative Care Organization, and Children’s Hospice International), as well as funding for these collaborations, must be a national priority.
Many families who are navigating the health care system during the treatment of their child’s cancer often joke that they should receive honorary medical or nursing licenses. This comment, although somewhat tongue-in-cheek, underscores the complexity of the tasks of children and families facing life-threatening illness. From the time of diagnosis to the time of cure or death, families must assimilate an overwhelming amount of information, function as advocates for their child and themselves, make informed decisions (often without adequate information), and negotiate ever-changing systems for delivery of care (including insurance plans). All this must be accomplished while continuing to work or care for other family members at home. These tasks become increasingly burdensome and difficult when a child’s prognosis is not good, and families must balance quality-of-life issues with their drive and need to “leave no stone unturned” in pursuing treatment options. In this scenario, provision of accurate, up-to-date, and comprehensive information in an understandable manner is even more crucial.
It is at the stage of diagnosis of a life-limiting prognosis that families are faced with seemingly dichotomous treatment options. The availability of Phase I and II clinical trials for pediatric oncology patients offers continued “aggressive” therapy with a small chance of physical or life-prolonging benefit to the patient, and possibly with altruistic benefits. At the same time, palliative care options need to be discussed so that optimal symptom management can preserve patient comfort and dignity. It is this simultaneous provision of potentially curative and palliative medicine that currently escapes us.
If resources for providers of pediatric end-of-life care are lacking, the availability of educational materials for affected children and their families