As emphasized throughout this report, palliative care is not an “either/ or” proposition. Although care may sometimes focus solely on patient and family comfort, the integration of palliative care with curative or life-prolonging therapies can benefit children who survive life-threatening conditions as well as children who die and can thereby support the families of children in both groups.
This chapter examines the physical, emotional, spiritual, and practical dimensions of care for children with life-threatening conditions and their families. Although bereavement care is part of comprehensive emotional and spiritual care for family members before and after a child’s death, it is—for emphasis—discussed in a separate section. Recommendations related to the discussion in this chapter are sufficiently intertwined with the discussions and recommendations about the organization and delivery of care in Chapter 6 that they are included in that rather than this chapter.
Physical comfort should be a fundamental priority in health care for all children, but it is especially important for children who have life-threatening medical conditions and are enduring burdensome therapies. Unrelieved physical distress affects both the child and the family. It can also interfere with beneficial therapies, for example, when children in extreme pain will not cooperate with treatment.
Effective physical care for children requires a solid understanding of both the sources of distress—which can require extensive investigation— and the developmentally appropriate strategies for preventing or relieving that distress. For example, drug regimens shown to be effective in relieving a symptom in adults cannot simply be extrapolated to infants and children because developmental variations in metabolism and body composition (e.g., amount and distribution of fat, water, proteins) may affect the action of drugs. Unfortunately, many drugs have not been tested and labeled for use with children, and understanding of the underlying mechanisms of symptoms and symptom management techniques in children is underdeveloped. Federal regulations and legislation adopted in recent years provide incentives and requirements for pediatric research, including studies by pharmaceutical companies to test drugs in children and develop pediatric drug dosing information (USGAO, 2001b). Chapter 10 discusses these incentives and, more generally, the challenges—practical, methodological, organizational, legal, and ethical—of expanding the knowledge base for pediatric palliative care. It also discusses directions for future research to improve all dimensions of palliative and end-of-life care.