Legal Involvement in Pediatric Cancer Treatment Refusal: A Qualitative Study.

Abstract

OBJECTIVES To characterize the spectrum of legal options considered in cases of treatment refusal, nonadherence, and abandonment (TRNA); clinicians' thought processes regarding legal intervention; and perceived consequences of legal involvement. METHODS We conducted in-depth, semistructured interviews with 30 pediatric oncologists between May and September of 2019 regarding experiences with TRNA. The interview guide covered types of conflicts encountered; factors and strategies considered in response; effects of TRNA cases, personally and professionally; the role of ethical frameworks and legal requirements; and resources needed to manage TRNA cases. Interviews were transcribed and coded iteratively using thematic analysis. RESULTS Participants represented a range of institutional sizes, geographic locations, and years in practice. Twenty-five of 30 interviewees discussed legal consideration with regard to TRNA. Most participants first engaged the legal system through child protective service agencies. They considered patient age, treatment efficacy, quality of life (burden of treatment), and prognosis; family resources and social context; and preservation of therapeutic relationships and possible consequences of reporting. Experiences and outcomes of legal involvement varied. CONCLUSIONS Clinicians struggle with the tension between obligations to report medical neglect and fears that reporting may result in more harm than benefit to the child in question. We urgently need more dialog between health care professionals and child protective services and legal professionals. Stakeholders from both groups would benefit from a greater understanding of the other's thought processes; clarity regarding the relevant facts; and mutual progress toward creative, evidence-based solutions to working out these complex challenges.