Improving Medical Decision Making for Technologically Dependent Infants in State Custody – Avoiding Medically Ineffective Treatment Open Access
Williams, Helen (Summer 2018)
Published
Abstract
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
32
Table 3.1 – Discharge Needs for Neonates with Medical Complexity – Children’s Healthcare of Atlanta, Egleston
37
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
Personhood70
Limitation of Resources73
Summary75
“PREFER”77
Conclusions 82
References 84
Appendix A Selected Individual Level Responses to Moral Distress by C. H. Rushton 90
About this Master's Thesis
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Improving Medical Decision Making for Technologically Dependent Infants in State Custody – Avoiding Medically Ineffective Treatment () | 2018-07-12 11:19:50 -0400 |
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