Baby Doe and Beyond: Examining the Practical and Philosophical Influences Impacting Medical Decision-making on Behalf of Marginally-viable Newborns
| Publication year | 2010 |
Georgia State University Law Review
Article 4
3-21-2012
Baby Doe and Beyond: Examining the Practical and Philosophical Influences Impacting Medical Decision-Making on Behalf of Marginally-Viable Newborns
Craig A. Conway
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Recommended Citation
Conway, Craig A. (2008) "Baby Doe and Beyond: Examining the Practical and Philosophical Influences Impacting Medical Decision-Making on Behalf ofMarginally-Viable Newborns," Georgia State University Law Review: Vol. 25: Iss. 4, Article 4. Available at: http://digitalarchive.gsu.edu/gsulr/vol25/iss4/4
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Conway: Baby Doe and Beyond: Examining the Practical and Philosophical In
BABY DOE AND BEYOND: EXAMINING THE PRACTICAL AND PHILOSOPHICAL INFLUENCES IMPACTING MEDICAL DECISION-MAKING ON BEHALF OF MARGINALLY-VIABLE NEWBORNS
Craig A. Conway*
Abstract
Infants born at twenty-seven weeks of gestation or less, or weighing less than 1000 grams, are considered to be extremely premature. These newborns teeter on the cusp of viability; it is only with aggressive medical intervention applied to virtually every bodily system that they have any chance of survival. If these marginally-viable newborns do, in fact, survive, they likely will experience a lifetime of severe physical, mental, and emotional handicaps—often as a direct result of the medical treatment they received. Consequently, this population represents one of the most contested treatment groups in medicine.
Advances in technology and medical education in the past century have allowed doctors to save some of these extremely premature newborns who previously would have most certainly died. However, the philosophical, ethical, and legal concerns raised by attempting to preserve these infants are being weighed by an increasing number of decision makers. Whereas, prior to the 1970s, decisions regarding the infant's treatment plan were primarily in the hands of the parents and physicians—that is no longer the case. What was once a private decision made by these grief-stricken parents with the advice of their physicians has since become a matter for the public domain. These fragile infant's outcomes are now being debated by parents,
* Research Professor, University of Houston Law Center, Health Law & Policy Institute, LL.M. (Health Law), University of Houston Law Center, J.D. Syracuse University College of Law. The author would like to thank William Winslade, Leslie Griffin, Nathan Andersen, and Anne Kimbol for their advice, guidance, and support during the writing of this article. Most importantly, the author wishes to thank his wife, Sarai, and their son, Harrison, for their love and support while he was pursuing his LL.M. and throughout the writing of this article.
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physicians, hospital administrators and bioethics committees, legislators, courts, media outlets, and the general public. The current situation is less problematic when the decision-making agents are in agreement regarding the infant's course of treatment. However, when disagreements arise, a once private heartbreak can now become a public controversy that lacks a single, agreed-upon agent for making the life and death care choices in the best interests of the newborn. Instead, a seemingly moral, ethical, and legal tug-of-war between the parties can erupt, each differently valuing the medical condition and care of the barely viable neonate whose potential quality of life is unknown.
After introducing the multiple actors and variables that lead to the emergence of conflict in medical decision making on behalf of a marginally viable infant, this Article details the practical criteria physicians use when determining whether aggressive medical treatment should be initiated or when palliative care should be provided to an extremely premature infant. The Article then discusses the sometimes difficult process of determining a medical treatment plan made in the "best interests" of the infant. The Article then explores the value system of vitalism often possessed by parents or others adamantly expressing that their child's life should be preserved at all costs, and often in spite of the pain and suffering endured by the newborn; such a belief system often leads to conflict in medical decision making and may ultimately lead to litigation. Though they are not cases of extreme prematurity, the medical and legal cases of Sun Hudson and Emilio Gonzales are representative of such resulting litigation. The Article then examines the chronological history, evolution of, and subsequent impact of the Baby Doe regulations initiated by the Reagan Administration. Next, the Article examines the medical and legal case of Sidney Miller which best represents conflict resulting from the convergence of the multiple variables discussed. The Article then examines the most recent legislative initiative to inject a philosophical preference for the sanctity of life into medical decision making via the Bom-Alive Infants Protection Act of 2002. The Article then provides
recommendations to reduce or remove parent-physician conflict and concludes with an argument for consistent assessment of the infant, care and counseling to be provided to families, and collaborative decision making to determine a medical course of action that is in the best interests of the infant.
Introduction
Set off in a small meeting room just outside the neonatal intensive care unit (NICU) at a nearby hospital, the parents of an infant born at the edge of viability meet with the attending neonatologist to discuss their newborn's grim prognosis. Sitting on the blue vinyl couch tucked in the comer of the sterile beige room, the parents look to the physician for answers in a seemingly hopeless situation. For a moment, the whirring of the overhead ceiling fan is the only sound heard. This was not where the parents envisioned themselves eventually sitting when they first learned they were going to have a child. Then the neonatologist begins to lay out the cold, hard facts about their child's medical condition. Born at twenty-four weeks of gestation, the newborn is sixteen weeks premature of the forty weeks required of a full-term pregnancy. Weighing just over two pounds, the infant could fit into the palm of an adult hand. Every organ and system in the fragile infant's body is underdeveloped and struggling to function. The child is unable to breathe without assistance from a respirator and recently developed an infection that appears to be getting worse. There are small, thin lines of varying colors inserted at various locations on the infant's body, delivering antibiotics, steroids, nutrition, and other medicines to ensure the infant's survival. Beeping and buzzing machines loom nearby to inform medical staff of the infant's heart rate, breathing rate, and blood pressure. Looking at the newborn in its current state is not easy. Its skin is nearly translucent and wrinkled and purple veins are easily visible running throughout its body. It appears to be struggling, but it is difficult to be sure. Prolonging its life through medical means may eventually only cause it pain and suffering. The physician informs the parents that even if
their child survives, a lifetime of disabilities likely awaits including blindness, seizures, cerebral palsy, and mental retardation. There are no guarantees the neonatologist can provide. Then the physician asks the question: "What would you like us to do? Do you want us to continue doing everything we can to save your child? Or do you want us to provide comfort care so that the child may peacefully die?"
This Article addresses medical decision-making made on behalf of the most vulnerable of infants, those born alive but who without receiving aggressive medical intervention would most certainly die. They are typically born at twenty-seven weeks of gestation or less and teeter on the cusp of viability. They are the borderline cases physicians confront frequently; unable to sustain life on their own, these newborns' futures are often in the hands of neonatologists and other pediatric specialists. Given the technological advances and medical knowledge at their disposal, neonatologists often must decide not if they can, but if they should intervene to force life upon an infant. Parents, lacking the medical expertise of the physician, make extremely difficult decisions that pursue life or permit death for their child. To choose life with resulting severe handicap takes a profoundly deep emotional, psychological, and financial toll on the parents and family. To choose death brings similar grief and sometimes private regret that the parents should have chosen differently. For nearly fifty years, NICUs have been the locus for this debate.
Prior to the 1970s, decisions regarding the child's treatment plan were primarily in the hands of the parents with physician consultation; that is no longer the case. Parental autonomy in making medical decisions on behalf of a child has been constrained in the past thirty years. Today, the philosophical and practical concerns raised by attempting to preserve these infants are being weighed by an increasing number of decision makers including multiple physicians, hospital administrators and bioethics committees, legislators, courts, media outlets, and the general public. What was once a private decision made by these grief-stricken parents, has since become a matter for the public domain. The current situation is
relatively unproblematic when the decision-making actors are in agreement regarding the infant's course of treatment. However, when...
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