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That parents have the legal right to make decisions does not and should not, however, mean that parents and clinicians should simply exclude children from discussions and decisions about their care. Failing to provide children with information and the opportunity to discuss their fears, concerns, and preferences can isolate them and add to their anxiety and other distress. In Chapter 4, the committee recommended that children and adolescents be informed and involved in decisionmaking—consistent with their condition, maturity, and preferences and with sensitivity to the family’s culture and values. Involving the child and trying to see care through the child’s eyes is also an element of child- and family-centered care as discussed in Chapter 6. Particularly for adolescents, restricting participation in decisionmaking “may unnecessarily create tension where a therapeutic alliance is needed” (Burns and Truog, 1997, p. 73). Many medical care consent forms include a section documenting “assent” to care by adolescents.2
Care must, however, be taken not to give the false impression that parents will never override their child’s expressed wishes. Decisions by child patients—and by parents and adult patients—may be constrained by organizational or governmental policies or by environmental factors. For example, state laws may require emergency medical services providers to attempt resuscitation even for adults or children with DNR orders (Sabatino, 1999). Likewise, deeply held cultural values may lead parents to reject proposals to involve the child or even provide the child with information about his or her condition. Clinicians may respect these values but still be dismayed. Years of experience may temper such reactions. As one clinician observed “. . . more and more I’ve realized that it’s going to unfold the way that family needs it to unfold” (Mildred Solomon, Ed.D., Education Development Center, taken from interviews conducted for the Initiative for Pediatric Palliative Care, unpublished analysis by Hardart et al., 2002).
Although it is important to understand the ethical and legal context for decisionmaking, most disagreements about care are resolved informally through discussion and reflection. For example, the vignette about the Devane family in Chapter 3 described how an adolescent with recurrent cancer prevailed in refusing further burdensome experimental treatment (wanted by her physician and parents) and in living her remaining time doing what she wanted to do.
The AAP defines the steps to securing assent to include helping the child understand his or her condition and what to expect, assessing the child’s understanding of his or her situation and identifying any inappropriate pressure on the child, and seeking an expression of the child’s willingness to accept treatment (Kohrman et al., 1995).