participate in end-of-life discussions (Nitschke et al., 1982). The researchers also concluded that, in practice, the patients themselves (aged 6 to 20 years) often made the final decision between investigational therapy or supportive care for their end-stage cancer. Of the children studied, 14 chose further chemotherapy, 28 chose palliative care only, and 1 made no decision. The majority of children who chose supportive care were able to talk with their families about their fears and actively participate in family life.
For adolescents, regardless of their legal status, parents may recognize and accept that their teenager has the evident intellectual and emotional maturity to make decisions about care at the end of life. Adolescents may, however, need particularly careful assistance in understanding the available options and their possible consequences (Stevens, 1998; Hinds et al., 2001; see also Rushton and Lynch, 1992; McCabe, 1996; McCabe, et al., 1996). Some research suggests that younger adolescents do not differ greatly from adults in their ability to understand and reason about medical alternatives (Weithorn and Campbell, 1982), but other research suggests that younger adolescents are less able than older adolescents to imagine future risks and consequences of choices (Lewis 1981). Some studies suggest that involving children in decisionmaking increases their capacity to make decisions (Lewis and Lewis, 1990; Alderson, 1993).
Devising a good palliative care plan does not ensure implementation. Later chapters of this report suggest how organizational problems, financial obstacles, lack of adequately trained health professionals, and gaps in scientific knowledge can compromise care. For example, institutional policies may restrict the hours during which families can visit a seriously ill child and physical structures may limit the amount of privacy, intimacy, and physical comfort available to families.
Geography is another limiting factor. Children and families in remote rural areas will generally have less access to certain palliative care resources just as they tend to have less access to other health care resources such as advanced pediatric trauma care. Regional information and consulting resources can help (see recommendations at the end of Chapter 6) but cannot overcome all geographic problems.
Even with good support from the child’s care team and involved institutions, much of the responsibility for implementing and monitoring a child’s care plan will rest with family members. As Hilden and colleagues have observed, families coping with a child’s extended life-threatening ill-