families facing fatal or potentially fatal conditions. Other children and adults suffer because they lack health insurance altogether.

Issues Unique to or Particularly Evident with Children

Notwithstanding these common problems, certain concerns in palliative, end-of-life, and bereavement care are unique to or particularly evident with children. As is often emphasized, children are not small adults. Clinicians, parents, and others working with ill or injured children must consider developmental differences among infants, children, and adolescents that may affect diagnosis, prognosis, treatment strategies, communication, and decisionmaking processes.

Many children who die are born with rarely seen medical conditions, which creates substantial uncertainty in diagnosis, prognosis, and medical management. Even for common medical problems, children’s general physiologic resiliency complicates predictions about their future. In situations laden with fear, anxiety, and desperation, this greater uncertainty adds to the burdens on physicians and families as they try to assess the potential benefits and harms of treatment options and make hard decisions. Further, many communities will not have enough cases of various life-threatening medical conditions in children to generate much local experience and clinical expertise in their evaluation and management, including end-of-life care. As a result, seriously ill children and their families must often travel far from home for treatment, which removes them from their usual sources of emotional support and may disrupt parents’ employment and strain family relationships and finances.

While still mentally competent, adults can create advance directives and other binding documents to guide their care if they later suffer significant loss of decisionmaking capacity. In contrast, states, almost without exception, will not recognize a formal advance directive signed by a minor, even a minor living independently. In most situations, parents have legal authority to make decisions about medical treatments for their child.

Many problems facing children with life-threatening medical conditions and their families and many shortcomings in end-of-life care are embedded in broader social, economic, and cultural problems. Unlike virtually all elderly adults, who are covered by Medicare, approximately 15 percent of children lack public or private health insurance. Children with insurance are covered by myriad private and state programs that have widely differing but poorly documented policies and practices for covering palliative, end-of-life, and bereavement services. On the one hand, this diversity of insurance sources could encourage innovation; on the other hand, it makes it extraordinarily difficult to identify and correct deficiencies in any comprehensive way.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement