What is Taught About the Care for the Dying Child in General Pediatric Texts? 639

We reviewed the latest editions of Avery et al., Forfar et al., Nelson, Oski, and Rudolph for information on death and dying for 13 causes of death in children: HIV, ALL, neuroblastoma, brainstem glioma, child abuse, SIDS, bacterial meningitis, near-drowning/drowning, cystic fibrosis, hypoplastic left heart syndrome, hyaline membrane disease, congenital diaphragmatic hernia, and trisomy 18. Next we looked at separate sections that covered general issues of death and dying. Information on death and dying for each disease in each book was ranked 0 (no information), + (some information), and ++ (helpful information) for 9 areas which would help manage a dying patient (mortality statistics, prognostic/risk factors, medical interventions to alter disease course, mode of death, family effects, advance care planning, communication with family, communication with child, and symptom management). Ranking was done by two independent evaluators; discrepancies were settled between the evaluators. Results - All books provided helpful information on mortality statistics, prognostic factors, and medical interventions to alter course. Helpful information on mode of death was offered by most texts for SIDS and near-drowning/drowning. Some information or more often no information was available in areas of family effects, advanced care planning, communication with family, communication with child, and symptom management for the 13 diseases. Four of the five books had separate sections where death and dying were covered in general terms; these offered helpful general information for family effects, advanced care planning, communication with family and child, and symptom management. Summary Pediatric textbooks provide very little disease specific information for guidance on the care of dying patients. The texts provide useful general information, however this may be hard to apply to specific patients because of the diversity of causes of death in childhood. We recommend that general pediatric texts provide disease specific information to guide physicians in caring for dying patients.