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As with other aspects of palliative, end-of-life, and bereavement care, the legal system and ethical frameworks discussed here reflect this country’s history and dominant culture. Although the legal system of the United States and arguments based in biomedical ethics may sometimes confuse or surprise those raised in this country, people raised in other cultures may find them incomprehensible or possibly shocking. Particularly in legal matters, flexibility to consider cultural differences may be limited. Nonetheless, it is still both humane and prudent for clinicians, social service personnel, and legal counsel to be sensitive to differences in cultural values and experiences and to try to minimize conflict and family distress related to such differences. (See Appendix D for additional discussion of cultural diversity.)
TYPES OF DECISIONS
In recent decades, many legal disputes and ethical debates about care for infants and children have involved decisions to start or stop medical interventions. Other disputes focus on the limits of parents’ authority to decide about their child’s care and on whether and to what extent quality-of-life and financial considerations should influence decisions about life-sustaining treatments. This section briefly describes these decisions and the questions they have raised. Much of the initial discussion of some of these issues, for example, withholding and withdrawing life-support technologies, occurred in the 1970s and 1980s and predated the increased attention to the techniques and benefits of palliative care. Again, the issues are not necessarily unique to children but tend to be more emotionally charged and difficult for all involved.
Decisions About Who Decides
In general, parents have the legal right to make decisions about medical care for their child. This parental authority is occasionally challenged, usually when parents refuse treatment recommended by their child’s physician. In addition, adolescents have sometimes sought control over crucial decisions about their future, often in situations involving reproduction but sometimes involving care for far advanced illness. Sometimes they succeed. For example, in 1994, state officials unsuccessfully tried to force a 15-year-old boy, who had received two liver transplants, to take medications that he refused on grounds of unbearable pain (Penkower, 1996; see more generally McCabe, et al., 1996).1
For the situation in which a child’s participation in research is involved, federal regulations normally require both that parents give permission and that children also “assent” to participation. Chapter 10 discusses ethical issues related to the involvement of children in research.