Acquiescence is Not Agreement: The Problem of Marginalization in Pediatric Decision Making

Abstract

Although parents are the default legal surrogate decision-makers for minor children in the U.S., shared decision making in a pluralistic society is often much more complicated, involving not just parents and pediatricians, but also grandparents, other relatives, and even community or religious elders. Parents may not only choose to involve others in their children’s healthcare decisions but choose to defer to another; such deference does not imply agreement with the decision being made and adds complexity when disagreements arise between surrogate decision-makers for minor children and their physicians. I argue that clinicians and ethicists have a duty to consider voices marginalized by hierarchical structures, including but not limited to gender-based inequalities. This approach involves negotiating potential conflicts: between respecting differences of culture and religion, on one hand, and assuring that the wishes of those who are most invested in children’s lives are considered, on the other.

Keywords:

• Children and families decision making pediatrics informed consent

This article is referred to by:

Emotion as a Signpost in Complicated Pediatric Decision-Making

Blood is Thicker than Water, or is It? The Possible Role of Stepparents in Pediatric Decision Making

Supporting Marginalized Decision-Maker’s Autonomy(ies)

From “How” to “Why”: Reasons for Magnifying and Marginalizing Voices in Pediatric Decision-Making

Voice, Vulnerability and Dependency of the Child: Guiding Concepts for Shared-Decision Making

Culturally Aware Communication Promotes Ethically Sensitive Care

When Parents Prefer to Defer: Is ‘Deferral’ Always Problematic in Pediatric Decision-Making?

When Clinicians Marginalize Decision-Makers

ACKNOWLEDGMENTS

The author wishes to thank Rachel Fabi, PhD for her critical feedback on early drafts of this manuscript; Cynthia B. Morrow, MD, MPH, Yoram Unguru, MD, MS, MA, and the anonymous reviewers for their thoughtful critique of the manuscript; and Amy Slutzky, PhD, MSLIS and Lauren Zahn, MA for their assistance reviewing the literature.

DISCLOSURE STATEMENT

The author has no conflicts of interest to declare.