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describes several categories of decisions that have prompted ethical or legal questions and disagreements;
outlines the key ethical obligations of clinicians as commonly identified by clinicians and bioethicists;
discusses the potential for conflicts among ethical obligations;
identifies some strategies for preventing or resolving conflicts among those involved in decisions about a child’s care; and
reviews some ethical and legal questions about the care of children, including the status of children as decisionmakers and certain boundaries on parental authority.
This discussion focuses on clinicians’ decisions rather than on parental obligations or societal issues of resource allocation and burden sharing. The discussion does not consider a number of ethical and legal controversies. These include the declaration of brain death in anencephalic newborns, continuation or discontinuation of pregnancy following prenatal diagnosis of a fatal medical problem, use of certain alternative or complementary therapies at the end of life, and euthanasia. The chapter also does not discuss licensure issues, some aspects of which are considered in Chapter 6. Chapter 10 examines ethical issues in research involving children. Although this chapter does not include formal recommendations, the committee believes that the strategies for preventing and resolving conflict discussed here should be considered and tested as institutions develop the procedures and protocols recommended in Chapters 4, 5, and 6.
Many legal and ethical questions considered here are relevant for palliative and end-of-life care for both adults and children. Some issues are, however, unique to children. One example is whether schools serving medically fragile children must honor parental requests that cardiopulmonary resuscitation not be attempted for their child. Another involves getting permission from an abusive parent to withdraw life support when the parent will be charged with murder after the child’s death. Not unique but especially wrenching when a child is involved are questions about the ethics of using or forgoing certain medical interventions when disease is far advanced.
Although it is important to understand the limits that courts or legislatures have imposed on decisionmaking by clinicians or parents or both, these limits will not affect most decisions about palliative and end-of-life care for children. Similarly, the legal limits on children’s decisions about medical treatment are not inconsequential, but they should not constrain efforts by clinicians and parents to inform children about their condition (consistent with their intellectual and emotional maturity) and to determine and consider children’s treatment preferences. An assumption of this committee and most sources consulted by the committee is that litigation should be a last and rare resort when clinicians and family members disagree.