Alternative medicine in childhood cancer: Challenges of vernacular health perspectives to biomedicine

The conventional treatment of pediatric malignancies is hailed as one of oncology\u27s greatest successes. Yet surveys report that a significant percentage---even the majority---of families who seek pediatric cancer care utilize alternative therapies as well. This phenomenon has perplexed many members of the medical community. Some have attributed it to parents\u27 psychological vulnerability or diminished reasoning capacity and have advocated public education about the dangers of unproven treatments. Others have called for cautious tolerance toward those alternative therapies that seem harmless. Common among all responses is a commitment to child protection. Encoded in bioethics and the law, this commitment presumes the superiority of conventional cancer care over all other forms of healing and requires the reining in of families who stray from prescribed treatments. This dissertation employs experience-centered ethnography to highlight vernacular health perspectives on childhood cancer. It demonstrates that at the center of parental treatment decisions lie views on concepts such as health, safety, effectiveness, and acceptable risk that depart from biomedical definitions of the same terms. Situating those views in historical contexts that reveal medicocentric ideologies in oncology, health law, and bioethics, it demonstrates that the differences between biomedical and vernacular worldviews stem more from divergent ontologies and epistemologies than from expert and lay differences in the comprehension of scientific facts. In light of the fact that conventional cancer care guarantees neither a cure nor a life free of serious side effects, this dissertation suggests that in its effort to protect children with cancer, the medical establishment may at times compromise their health and even harm them. At the center of this paradox lies a paternalistic health policy that amplifies the voice of medicine while drowning out vernacular perspectives. In pediatric cancer, this policy can deprive children of treatments that are seemingly less toxic than standard interventions and potentially of significant therapeutic value. The dissertation concludes with a call for a trust-building health policy that inserts vernacular health perspectives into biomedical, legal, and bioethical discourses. It argues that such a policy would generate improved health outcomes for children with cancer and increased satisfaction for families and physicians alike