A framework for navigating requests for nondisclosure in pediatric palliative care.

Abstract

Background:The treatment courses of youth with complex, chronic, and/or lifethreatening 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 StatementIndividuals 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.

Introduction to the special issue on palliative care, end-of-life, and bereavement: Integrating psychology into pediatric palliative care.

“…PPC psychologists are often called upon to help reconcile divergent perspectives between medical providers and caregivers about disclosures of illness-related information. In their contribution to the Special Issue, Brown et al (2021) utilize a case example to propose a unified model that uses an ecological systems framework to guide pediatric psychologists in navigating these challenges. Guiding principles and conversational prompts for facilitating disclosure-related discussions are outlined.…”

“…Authors emphasize clinical implications and offer concrete recommendations for PPC clinicians, which we anticipate will be of the highest value to readers. These include conversational prompts and concrete strategies for intervening in cases where caregivers request nondisclosure (Brown et al, 2021), parent-driven recommendations for programming and direct support for bereaved parents (Clark et al, 2021; Dias et al, 2021; Henning et al, 2021), clinical intervention targets for parents during active treatment (Fisher et al, 2021), and guidance for providing culturally sensitive clinical services (Kentor et al, 2021; Lyon et al, 2021; Sample et al, 2021).…”