Disability Ethics in Neonatology: A New Script for Neonatologists Informing Parents About Their Infant with Down Syndrome Restricted; Files Only

Dworetz, April Robin (2014)

Permanent URL: https://etd.library.emory.edu/concern/etds/sb3978414?locale=en
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Abstract

This thesis establishes a new script to help neonatologists and parents of neonates who are newly diagnosed with Down syndrome (DS) to better imagine the potential life experience for the infant. It incorporates disability ethics and ethical avenues for communication about children with DS. And it provides a nonableist way for healthcare professionals (HCPs) to help parents facing an unexpected situation.

The introductory chapter examines the script's importance, the medical and social models of disability, and reviews of neonatal and disability ethics, and includes a brief overview of DS. In the subsequent four chapters, I discuss the contextual factors leading to this conversation: neonatal ethics, disability ethics, giving "bad news," and the language of disability. Together these chapters address both the need for and the concepts essential to this alternative dialogue.

The core chapter of this thesis comprises two scripts--the old script and the new script--and an analysis of the old. The old script, a hypothetical conversation between a neonatologist and the parents of a newborn with DS, illustrates the ableism (discrimination against disabled people) typically present in these discussions. I analyze the old script for ableist attitudes and associated ethical issues. Then I present the new script, an imagined dialogue between a different neonatologist and the same parents. This script exemplifies a nonableist and ethically superior way to convey to parents that their baby has DS. This script accomplishes four goals: (1) it emphasizes the importance of nonableist communication, (2) it speaks the language of HCPs, (3) it guides the HCP to use different content for such conversations in the future, and (4) it offers a template for HCPs upon which to base their discussions.

As a result of adopting this innovative conversation, neonatologists and other HCPs may re-envision disability. In addition they may provide better support for their inexperienced parents, better care for their patients, better bonding between parents and infants, and a better lived experience for parents and their disabled children. My goal is to disseminate this script to neonatologists and pediatricians to encourage a different image of babies with DS--and all disabilities.

Table of Contents

Abstract

Acknowledgments

Abbreviations

Chapter 1 Introduction: Neonatology, Disability, and Decision

Making for Disabled Infants pages 1-33

Chapter 2 The Ethics of Life-and-Death Neonatal Decision

Making pages 34-63

Chapter 3 Disability Ethics pages 64-106

Chapter 4 Giving "Bad News" pages 107-27

Chapter 5 Language and Disability pages 128-42

Chapter 6 A New Script for Pediatricians: Communicating with

the Parents of a Neonate with Down Syndrome pages 143-217

Chapter 7 Conclusion pages 218-27

References pages 228-46

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