Do Reasons Matter? An Empirical Exploration of the Role of Parents' Reasons in Treatment Refusal in Pediatric Oncology.
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BACKGROUND: Accepted ethical principles in pediatrics hold that parents' reasons should not matter to determining ethical boundaries: it is the decision's effect on the child that matters. However, there is ongoing discussion surrounding what ethical weight, if any, should be granted to parents' reasons in decisions for their children and, to our knowledge, no empirical research focused on these questions. Refusal in pediatric oncology represents a particularly useful case in which to test these ethical principles. Understanding the influence of parents' reasons on treatment disagreements is important to assessing alignment between ethical guidance and clinical practice, determining whether intervention principles in pediatric ethics require revision, and mitigating implicit bias in clinicians' and ethicists' ethical judgments. METHODS: This was an exploratory, pilot qualitative study. Data was collected through semi-structured interviews with pediatric oncologists (n = 9) and clinical ethics consultants (n = 9), organized around two hypothetical cases of treatment refusal in pediatric oncology. Transcripts were coded in MAXQDA and analyzed using inductive content analysis. RESULTS: Participants agreed that it was important to engage with parents' reasons in the context of decisions for the child. Three main themes emerged from the interviews: 1) parents' reasons are not ethically relevant to assessments of harm, determinations of medical neglect or abuse, and decisions to seek state intervention; 2) parents' reasons matter in other ways, including being instrumentally or intrinsically valuable; and 3) religious and mistrust-based reasons evoke different responses. CONCLUSIONS: Our findings suggest there is, in principle, a strong commitment among pediatric oncologists and ethicists to conventional ethical guidance, especially the harm principle. Participants emphasized the instrumental value of engaging with parents' reasons, including how exploring parents' reasons can facilitate practical strategies for resolving disagreements. Our findings also suggest there may be some role-based differences in participants' views about the value of engaging with parents' reasons.