Pediatric Cancer Treatment Refusal: To Report or Not to Report?

A cancer diagnosis is terrifying and difficult to comprehend, and cancer treatments are frightening, complex, and often prolonged. With this in mind, it is not surprising that despite the best communication efforts, there are patients and families who decline what providers consider life-sustaining cancer care for reasons that may be hard to fathom. In an article early releasing in Pediatrics entitled “Legal Involvement in Pediatric Cancer Treatment Refusal: A Qualitative Study,” Dr. Amy E. Caruso Brown of SUNY-Upstate in Syracuse and colleagues from Vanderbilt University investigate this important topic (10.1542/peds.2024-066180). They characterized the range of legal options clinicians consider in cases of patient treatment refusal, non-adherence, and abandonment (TRNA) using structured interviews with pediatric oncology clinicians.

Most research examining TRNA situations has focused on the ethical aspects; this study is unique in that the authors examined the legal aspects. Thirty pediatric oncologists with a broad range of years in practice and from a range of geographic regions and institution sizes consented to in-depth semi-structured interviews on the topic of TRNA; 25 of the 30 discussed related legal issues, and their transcribed and coded interviews are the subject of the study.

The study findings are thought provoking and bring up issues and questions for all of us to consider. Mandated reporting to Child Protective Services (CPS) preceded any court order in all but one family situation, yet participants found it difficult to adequately define “child neglect” in the context of child cancer care and struggled with the worry that reporting would harm rather than help the child’s care due to parental anger and fear associated with reporting.

Circumstance heavily impacted the decision to report to CPS, with participants considering:

• Child-specific factors: age, burden of treatment, prognosis, and efficacy of treatment
• Family factors: financial resources, social context, educational level, parental intent
• Perceived and possible threats to the therapeutic relationship

Study participants in most instances lacked support for their decision-making, including (1) a lack of formal institutional policies that address legal aspects of TRNA situations, (2) tension and disagreement within the healthcare team with respect to whether reporting to CPS was appropriate and needed, and (3) uncertainty and variability in anticipated custody and care outcomes that depend on the anecdotal discretion of CPS and judicial authorities.

The authors conclude that we urgently need dialogue between healthcare providers, CPS authorities, and legal professionals to achieve consensus. Research is needed to better resolve the issue of balancing our requirement to report, with concern that reporting will negatively impact the child’s outcome and the therapeutic alliance with their family. This article sensitively and thoughtfully frames the challenging legal issues that directly impact us, whether as general or oncology providers, and more importantly, the families and their children with cancer diagnoses for whom we provide care and want the best possible outcome.