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nation of diversity and small numbers adds to the complexity of determining prognosis, recognizing the end stage of illness, assessing the appropriateness of shifts in the emphasis and goals of care, and helping children and their families prepare for death. Small numbers and diversity can also complicate the development of successful programs to provide and fund palliative and end-of-life care for children and their families. Further, the combination of these characteristics with children’s changing developmental needs suggests that palliative care and hospice programs designed for adults will require significant modifications to help children and their families.
Fourth, many important causes of death in childhood—including those due to injuries, low birth weight, and SIDS—are linked to socioeconomic disparities. In addition to encouraging preventive health services and other policies and programs to counter or reduce socioeconomic inequalities, advocates of pediatric palliative care need to consider how their programs can best serve disadvantaged and troubled families and how they can best identify the kinds of support desired by these families for themselves and their children.
Fifth, hospitals, especially their neonatal and pediatric intensive care units, play a particularly important role in care for children who die of complex chronic problems. Discussions of end-of-life care for older adults tend to emphasize practices and policies intended to allow more people to die at home without unwanted “rescue” efforts. Although similar efforts adapted to children and their families may be desirable, more flexible attitudes about the role of hospital care including intensive care at the end of life may be appropriate for this young population.
Sixth, no single protocol for palliative and end-of-life care will fit the varied needs of children who die and their families, and no single focus of research will build the knowledge base to guide such care. The diversity of circumstances and the relatively small numbers of child deaths will challenge researchers and policymakers as well as clinicians.
Chapter 3 builds on this chapter’s epidemiologic and quantitative focus by adding a more qualitative perspective on the pathways to death in childhood. It reinforces the conclusion that care for children who die and their families must be adjusted to their specific circumstances and needs, although the fundamental principles outlined in Chapter 1 will broadly apply.