Improving Medical Decision Making for Technologically Dependent Infants in State Custody – Avoiding Medically Ineffective Treatment Open Access

Williams, Helen (Summer 2018)

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Technology dependent infants in state custody present a unique challenge for healthcare providers. In Georgia, the Department of Family and Children Services (DFCS) is responsible for overseeing the care of these babies. Like many other state child-welfare departments, Georgia DFCS will not consent to the withholding or withdrawal of life sustaining treatments. This position holds, irrespective of the patient’s prognosis, degree of pain and suffering, or quality of life. Without a voice to speak directly for their best interests, medically fragile infants in state custody are some of the most vulnerable patients in the NICU. This thesis will address the importance of end-of-life alternatives for critically ill infants in state custody. By mandating indefinite intensive care, the state has allowed foster children to be regarded differently than other patients with similar conditions. We will refute the presumption that continuing intensive care is always protective of the child’s best interests by discussing the ethicality of treatment withdrawal, quality of life concerns, and the responsibilities of surrogate decision makers. We will conclude by presenting a novel tool to assist in the process of medical decision making – the PREFER model. 


Table of Contents

Introduction 1

Case presentation 4

Chapter One “Futility” 6

Chapter Two Neonatal Hypoxic Ischemic Encephalopathy 20

Figure 2.1 Pathophysiology of Hypoxic Ischemic Encephalopathy26

Chapter Three Home Care and Foster Care of Infants with Complex Medical Conditions


Table 3.1 – Discharge Needs for Neonates with Medical Complexity – Children’s Healthcare of Atlanta, Egleston


Figure 3.1 Infant mannequin with tracheostomy38

Figure 3.2 Simplified diagram of Neonatal airway39

Chapter Four Moral Distress and Moral Resilience 48

Figure 4.1 – From Moral Distress to Moral Resilience 58

Chapter Five Ethical Analysis and Recommendations 59

State Decision-Makers61

Equal Treatment68

The Medical Providers as Decision Makers 69


Limitation of Resources73



Conclusions 82

References 84

Appendix A Selected Individual Level Responses to Moral Distress by C. H. Rushton 90

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