However even in the case of protections of religious freedoms, exceptions are made in the case of minor children when the situation is judged to be life threatening. In pediatrics, the classic example of the limits of parental authority is the use of court orders to provide life-saving blood transfusions to infants and children when the parents are devout practitioners of the Jehovah’s Witness faith. Respecting ethnocultural difference in end-of-life care will also require attention to the normative practices of courts and hospital ethics committees. What assumptions undergird their deliberations? The physicians caring for Lia Lee had little difficulty convincing a court that they knew her interests better than her parents. Policies based on a careful examination of the interaction among religious freedoms, parental and child rights, and efforts to implement culturally sensitive care are needed. Excellent descriptive research on ethnocultural difference can inform policy development but will not provide easy answers to the normative questions. Developing policies to guide care for dying children is difficult under the most ideal circumstances . Determining the limits of culturally sensitive care for children with life-limiting conditions and their families will continue to be a daunting challenge in the clinic, in the courts, and for policymakers and legislators.
For funding our work on cultural dimensions of end-of-life care, we wish to thank The Greenwall Foundation, the National Institute of Nursing Research (R01 029060), the Open Society Institute’s Project on Death in America, the Robert Wood Johnson Foundation, the Oncology Research Fund of the Lucille Packard Children’s Hospital, and the British Columbia Health Research Foundation Community Services Grant Program. Dr. LaVera Crawley, as well as members of the IOM committee, provided helpful comments on earlier drafts. Amer Ahmed, Allison Campbell, Kenny Gundle, and Chara Gupta (all Stanford undergraduates) provided able research assistance and help with preparation of the manuscript.
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