health care providers, managers, researchers, policymakers, or the general public.
Some of the deficits in palliative and end-of-life care for children that are described in this report are similar to those experienced by adults (IOM, 1997). For example, frightened and upset patients and families may receive confusing or misleading explanations of diagnosis, prognosis, and care options. They may likewise be provided too little opportunity to absorb shocking information, ask questions, and reflect on goals and decisions, even when no immediate crisis is driving decisionmaking. Patients of all ages suffer from inadequate assessment and management of pain and other distress, despite the availability of therapies known to help most patients. For both children and adults, physicians may advise and initiate treatments without adequate consideration of their potential to cause additional suffering while offering no or virtually no potential for benefit. Opportunities are routinely missed to plan responses in advance for the reasonably predictable crises associated with many ultimately fatal medical problems.
Certain issues in palliative and end-of-life care are unique to or particularly evident with children. For example, despite 1997 legislation (renewed in 2001, P.L.107-109) that has stimulated increased pediatric drug testing, some drugs used to treat pain, nausea, and other symptoms in adults have yet to be tested or labeled for use in infants, children, or adolescents. Pediatricians thus may have inadequate information to guide their choices of drugs and minimize dangerous side effects, and some may choose not to treat certain children rather than risk such complications and associated liability. To cite another example, although legal issues related to decisionmaking may be somewhat parallel for intellectually and emotionally immature children and for adults who suffer from progressive dementia, the real-life situations may unfold quite differently, particularly in cases of child–parent conflict. While still mentally competent, adults can create advance directives and other binding documents to guide their care if they suffer significant loss of decisionmaking capacity. As discussed in Chapter 8, only one state will recognize an advance directive signed by a minor, although pediatric professionals agree that children should be informed and involved in discussions about their care, consistent with their developmental status.
Many children are born with rarely seen medical conditions, which creates uncertainty in diagnosis, prognosis, and medical management. Even for common medical problems, children’s general physiologic resiliency complicates predictions about survival and other outcomes. In situations laden with fear, anxiety, and desperation, this greater uncertainty complicates the physician’s and family’s efforts to assess and weigh the potential harms and benefits of treatment options.
Further, many communities will not have enough children with life-threatening medical conditions to generate much local experience and clini-