This chapter begins by considering palliative, end-of-life, and bereavement care for children and their families within a broader framework of efforts to improve the quality, coordination, and continuity of care for children with serious medical conditions. In addition to strengthening accountability for care, these efforts have sought to make health care more child and family centered, to establish a locus of responsibility for the care of children with special health care needs, and more recently, to develop care coordination models for children needing care for fatal or potentially fatal medical conditions. The chapter also provides an overview of the professionals and organizations that care for children with life-threatening medical problems and their families. The final sections return to the issue of continuity and coordination with a discussion of community and regional systems of care and present the committee’s recommendations.
Although this chapter focuses on the organization and delivery of palliative and end-of-life care for children and their families, such care must be understood within the broader health care system in the United States. The deficiencies of that system in providing affordable, universal access to safe, effective, compassionate, patient- and family-centered care are long-standing. Attention often focuses on children and adults who lack insurance, but as discussed in Chapter 7, even for children and families who have health insurance, public and private health plan rules and procedures may limit professionals and organizations from offering the amounts and types of palliative, end-of-life, and bereavement care that they believe would best meet the needs of the individual child and family.
More generally, the health care system in this country is characterized by complex and often confusing organizational, financial, and regulatory arrangements that link health care professionals and institutions with each other and with governments, insurers, and other organizations. “By fragmenting the patient-physician relationship and often putting personal physicians at a distance from their dying patients, these arrangements may diminish the knowledge and intimacy that contributes to a professional’s feeling of individual responsibility” (IOM, 1997, p. 122). One unintended consequence is that no health care professional is clearly responsible for seeing that patients gets needed care whatever its emphasis and whether they are at home or in the hospital. Thus, the committee believes that creating accountability for palliative, end-of-life, and bereavement care is a crucial element of any strategy to improve the quality of this care, including its coordination and continuity.