The Harm of Media in Pediatric Intensive Care Conflicts: Lessons from the Charlie Gard Case Open Access

Abstract

As pediatric critical care medicine has grown in technological capability, fewer children die suddenly. Instead, most children who die in the pediatric intensive care unit (PICU) do so following a controlled withdrawal of life sustaining technology. Given that children lack the developmental capacity to express their wishes, serious PICU decisions are made jointly between parents and pediatric healthcare professionals. Although the pediatric family centered model of care requires an attitude of shared decision-making, there are many factors such as parent emotional strain and physician bias that can make this process challenging. PICU conflict is common, most often arising from communication failures, and value differences. 

Parents who encounter PICU conflict may be tempted to utilize the media for support. While media use can offer many benefits for these families, it can also come at the risk of serious ethical harm. The Charlie Gard case is one such example of how well-intentioned media use can quickly escalate to harming the interests of critically ill children. The following details many of the ways in which media use can negatively impact the sick child’s human rights. Of particular concern are the rights to future welfare, dignity, and privacy. To mitigate these harms, a case is then made, not only for more bioethical attention regarding child media harm, but also for strategies to mitigate PICU conflict without the need for media attention. 

Table of Contents

Introduction.........................................................................................................................1 

Chapter 1 The Rights of Children.......................................................................................12 

Chapter 2 Families and Healthcare Teams..........................................................................25 

Chapter 3 Pediatric Intensive Care Conflict........................................................................41 

Chapter 4 Media Benefits....................................................................................................58 

Chapter 5 Media Harms.......................................................................................................83 

Chapter 6 Preventing Harm.................................................................................................110 

About this Master's Thesis

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School	Laney Graduate School
Department	Bioethics
Degree	M.A.
Submission	Master's Thesis
Language	English
Research Field	Ethics Health Sciences, Nursing
Keyword	ICU pediatric pediatric intensive care human rights media ethics media critical care ethics PICU child privacy dignity shared decision making Charlie Gard family centered care
Committee Chair / Thesis Advisor	Kathleen Kinlaw, Emory University
Committee Members	Jonathan Crane, Emory University Edward Queen, Emory University

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