ing that curative or life-prolonging treatments cease or that life expectancy be certified as six months or less (see Chapter 7). Still, even when both clinicians and parents are prepared to consider palliative or hospice care, lack of financial, organizational, and other resources may limit access to such care.
Although far more limited than corresponding efforts related to adult end-of-life care, some organizations mentioned here as well as others have begun community information and education programs to make options more widely known to families, health care providers, religious leaders, school personnel, and others. These efforts may encourage some parents to consider end-of-life planning earlier and may reduce avoidable distress for some children but are unlikely by themselves to make a substantial difference. More creativity and more research are needed to find strategies that encourage timely discussion of end-of-life care that will prevent needless suffering, help children and families make the most of their remaining time together, and preserve parents’ need to feel they have done everything possible for their child.
Agreement has been growing that children should be informed about their medical condition and that they should also be involved in discussions about the goals and plan of care, including end-of-life care, consistent with their intellectual and emotional maturity, medical condition, and desire to participate (see, e.g., Brock, 1989; Burns and Truog, 1997; Hilden et al., 2000c; Hinds et al., 2001; Nitschke et al., 2001). In many situations, even children and adolescents with serious cognitive disabilities can indicate their preferences about care. In writing about the death of his 28-year-old sister, who had Down syndrome and developed leukemia, physician Chris Feudtner wrote, “Along with my family, I had contemplated every facet of her life as long as I can remember—asking constantly what mattered to her and why—with efforts simply redoubled once she became sick, commitment deepened to abide by her rules as best we could” (Feudtner, 2000, p. 1622).
Certainly, a child’s cognitive and emotional maturity and preferences for involvement must be considered in preparing for initial and subsequent discussions to inform and involve children. What is appropriate for a 6-year-old—perhaps the use of stuffed animals and other play techniques to aid in explaining and assessing understanding—will not be appropriate for a 16-year-old.
Given this country’s ethnic, cultural, and religious diversity, family values about discussions of death, medical care, and children’s roles must also be taken into account and respected. The child’s care team must be