with family members, or completed advance directives or medical power-of-attorney documents (see, e.g., SUPPORT, 1995; Grimaldo et al., 2001; Wenger et al., 2001).
In any case, recommendations and suggestions for competent adults have only limited direct relevance for children and their families for various reasons. Except for children judged to be mature or emancipated minors (see Chapter 8), parents have the legal authority to make the medical decisions for their child, including decisions about end-of-life care, although they are often unwilling to face such decisions until the child is very near death. Children may be involved in discussions about their concerns and wishes, but their preferences about treatments will prevail only if their parents agree.
As discussed in Chapter 3, many serious illnesses in childhood run an unpredictable course of relapses and remissions, with acute events that can often be reversed for a period. Modern medical technology continues to advance and therapies that were seen as heroic just a decade ago are now considered standards of practice, such as bone marrow transplantation for relapsed leukemia or cardiac transplantation for certain heart conditions. Even when the prognosis with treatment is grim, children, families, and clinicians can postpone acknowledging an approaching death as they focus on potentially life-sustaining therapies (Goldman, 1999).
Consideration of goals for life’s ending and preparation for death involves much more than signing (or not signing) orders about cardiopulmonary resuscitation and other life-support measures. It also provides the opportunity for families to think about how to make the most of their remaining time together, particularly when it is clear that time will be short. Planning for this time can even provide parents some comfort as they anticipate and grieve in advance for their child’s death.
Attention to goals and choices in advance of an expected death can also help families reduce the possibility of certain distressing experiences, including unwanted interventions and even legal inquiries. For example, if an ill child dies a planned death at home and the plan explicitly provides for families to manage with no call to 9-1-1 or no race to the hospital (but with the child’s care team available for consultation and support), parents may be protected by having a written do-not-resuscitate (DNR) order in their possession,3 by having alternatives arranged in case their child’s physician cannot come to the home to pronounce death, and possibly—even if the child is not under hospice care—by calling the local hospice for advice about local law enforcement practices and expectations. (Although specific