A Framework for Navigating Requests for Nondisclosure in Pediatric Palliative Care

Abstract

Background: The treatment courses of youth with complex, chronic, and/or life-threatening illnesses are often punctuated with many consequential decision points, particularly when new information related to diagnosis or prognosis is revealed. These junctures may prompt disagreements between and within families and medical teams related to the appropriate amount and type of information to share with the child. When the beliefs held by clinicians and families about information disclosure diverge, pediatric psychologists may be consulted to facilitate collaborative conversations and promote shared decision-making. Objective: Decision-making regarding disclosure is often complex and nuanced. This article sought to synthesize literature on factors that influence disclosure in order to offer a unified model through which pediatric psychologists could guide these discussions. Method: The current article reviews relevant literature through the lens of Bronfenbrenner’s (1994) Ecological Systems Framework. A detailed case vignette is used to illustrate the application of this framework to disclosure decisions. Conclusion: The framework presented in this article is offered as a guide for liaising with families and treatment teams, promoting enhanced understanding of divergent viewpoints, and facilitating collaborative conversations about the amount and type of information to share (or not to share) with the child.

Implications for Impact Statement

Individuals hold varied beliefs regarding the disclosure of diagnosis and/or prognosis to pediatric patients, and these differences can contribute to increased stress and conflict among family members and providers. This article proposes a framework to guide psychologists in navigating requests for nondisclosure.