Approaches to Addressing Pediatric Cancer Treatment Refusal Beyond Legal Action

Parental refusal and abandonment of recommended treatment in pediatric oncology can have significant consequences for patients and cause moral and emotional distress for clinicians. We sought to describe the spectrum of approaches to treatment refusal and abandonment that pediatric oncologists utilize when trying to avoid legal intervention, prior to deciding to seek legal intervention, and/or when legal intervention had been deemed inappropriate.

US-based pediatric oncologists were recruited to participate in qualitative interviews through purposive and referral sampling to maximize diversity. The semi-structured interview guide covered types of conflicts encountered; factors and approaches considered in response; effects of treatment refusal, personally and professionally; role of ethical frameworks and legal requirements; and the resources needed to manage refusal cases. Interviews were recorded, transcribed, and coded using applied thematic analysis within the overall framework of grounded theory.

Participants reported using multiple tactics comprising three themes: logistics of communication, establishment of trust, and negotiation and compromise. They also described resources utilized, discussed how their experiences changed their practice, and what they would advise colleagues in the future, and identified barriers to successful resolution. Most participants did not have institutional policies or processes beyond the use of ethics consultation and desired more in-depth preparation and guidance.

Our work has created a foundation for the development of additional resources, including education and training, consensus guidelines that include the best available evidence for treatment modifications and the inclusion of alternative therapies, and better access to mental healthcare for those patients and families who need it.