The following HTML text is provided to enhance online
readability. Many aspects of typography translate only awkwardly to HTML.
Please use the page image
as the authoritative form to ensure accuracy.
ences of their families is a helpful foundation for considering the range of palliative, end-of-life, and bereavement services needed to assist children and families. In addition, it is important to keep in mind that for life-threatening conditions that are not invariably fatal, children who eventually die and children who survive often cannot be predictably distinguished at the time of diagnosis, during initial treatment, or sometimes even after initial treatments have failed. This unpredictability increases the challenges and the importance of understanding how to integrate aspects of palliative care from the time of diagnosis.
The first section of this chapter discusses prototypical trajectories of dying that depict in graphic form the different ways that death may come to children. The second section presents illustrative stories or vignettes that attempt to represent—in ways that epidemiologic data and charts cannot— the human dimensions of death in childhood. These stories, although they inevitably and greatly simplify real life, suggest how the varied circumstances that surround the deaths of children may affect the child, the family, and the health professionals who care for them.
The third section discusses prototypical patterns of care that illustrate traditional and newer perspectives on the relationship between curative or life-prolonging care and palliative and end-of-life care. The newer perspective, stressed in this report, encourages the integration of certain aspects of palliative care from the time a child is diagnosed with a fatal or potentially fatal medical condition. The section also discusses how the emphasis of care may vary depending on the medical circumstances and may, given similar medical “facts,” be affected by differences in family values and circumstances as well as differences in the resources available to them.
Documentation of the focus and adequacy of pediatric palliative and end-of-life care is very limited. The final section of the chapter reviews this small literature.
TRAJECTORIES OF DYING
To help illuminate differences in the paths that people follow to death, Glaser and Straus introduced the concept of a trajectory of dying. They proposed that “the dying trajectory of each patient has at least two outstanding [and variable] properties . . . duration and shape” (Glaser and Straus, 1965, p. 6). The shape of the trajectory depends on time and on the person’s level of functioning or health status. Figure 3.1 presents four simplified trajectories of death in childhood that depict time along the horizontal axis and health status along the vertical axis. These trajectories underscore the reality that no single model of care and support will apply to all dying children and their families. The trajectories do not, however, necessarily map in a straightforward fashion to specific models of palliative care.