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Making Mortal Decisions at the Beginning of Life: The Case of Impaired and Imperiled Infants
Jason Morrow
University of Texas Medical Branch, Galveston
JAMA. 2000;284:1146-1147.
Nearly 20 years have passed since the Reagan administration first drafted the "Baby Doe rules" that mandated treating impaired newborns unless (1) they are permanently comatose, (2) any treatment would merely prolong their death, or (3) treatment would not be effective.1 These rules were largely inspired by clinical encounters during the late 1970s and early 1980s, when infants born with multiple congenital abnormalities, such as Down syndrome and duodenal atresia, were allowed to die. The Baby Doe rules represent the first US legislative attempt to regulate the treatment decisions of physicians regarding intervention at the beginning of life. Since then, policymakers and jurists have contemplated the proper role of federal policy in this area. Some have supported these rules, insofar as they aim to prevent discrimination against disabled children as well as certain forms of child abuse and neglect.2 The rules have been criticized as being too distant from the reality of clinical decision-making,3 inconsistent with regulations regarding incompetent adults,4 or ineffective in light of other, less protective policies concerning the medical care of children.5
The controversy regarding Baby Doe continues unabated, with the debate generally between those defending the absolute value of life and those who believe in the absolute priority of liberty. The extreme polarity may be a natural consequence of rhetoric in public debate, which, in the case of religiously and politically divisive issues such as euthansia, abortion, cloning, in vitro fertilization, and stem-cell research, is often emotionally charged and laden with canonical commitments.6 However, controversy implies complexity. For behind the veil of rhetoric and polarization lies the insuperable plurality of moral understandings, the intrinsic uncertainty of medical prognoses, and the inherent ambiguity of quality-of-life assessments.
Recent controversies surrounding the proper care of imperiled newborns have emerged from the explosion of medical technologies. Technological developments in the treatment of infectious disease and of the complications of premature and low birth-weight infants have reduced infant morality rates, increased survival rates, and virtually eliminated severe forms of certain diseases.7 Yet the ability to save lives places parents and physicians in a morally precarious position: they must determine when the costs of expensive interventions outweigh the benefits. These decisions are especially troublesome because they usually require immediate and irreversible action, though they are invariably speculative and shrouded in uncertainty.
The controversies involving treatment at the beginning of life have been long debated. Plato wrestled with the legitimacy of infanticide. He articulated a widely accepted but clandestine approach that aimed to improve the hereditary qualities of the Greek population: ". . . the offspring of the inferior, and any of those of the other sort who are born defective, [physicians] will properly dispose of in secret, so that no one will know what has become of them."8
The usefulness of allowing certain infants to die remains an important aspect of the moral justification for refusing to treat impaired newborns. This justification derives largely from the questionable ontological status of these infants. While all newborns are human, they generally lack the characteristics of personhood, such as the intrinsic cognitive capacities that confer moral culpability upon mature individuals.9 Newborns lack a meaningful concept of self, they cannot foresee the consequences of their actions, and they cannot deliberate rationally. Moreover, they are not established extrinsically as productive members of society. Religious traditions suggest that the incipient relationships of newborns to society may be deemed less worthy of emotional and moral investment than the more mature relationships of older children and adults to society.10
Peter Singer argues that parents and physicians can justify infanticide on the basis of total utility: "When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed."11 This argument relies on a "replaceability" thesis. It stipulates that since newborns lack the rationality, autonomy, and self-consciousness of persons, they can be selectively killed and replaced with healthier ones in the same way that early prenatal diagnosis affords selective abortion of severely deformed fetuses.12
The logical force of this argument is compelling since it potentially provides society with more useful citizens (as Plato would argue) and families with healthier infants, but it involves an impoverished understanding of interpersonal and deontological relationships. First, the legal determination of citizenship and full protection under the law occurs at, or near, birth, so caregivers have a prima facie obligation to treat newborns as if they are more like persons than mere masses of flesh. Second, the birth of a child, healthy or impaired, represents a significant moment in the life of a family. The replaceability thesis grossly underestimates the bonding families can experience during the course of conception and pregnancy. Therefore, it neglects the uniqueness and value of gestation and being born. Third, though newborns possess few "person-making characteristics," their potential for becoming a person, even if they require technological intervention to survive, generates an interest in remaining alive. Perhaps the future interests and abilities of an infant secure for that infant a claim to the custody and care necessary to achieve personhood. Finally, replaceability undermines the value of diversity in human form. While it may not maximize total utility to live with disfigurement or impairment, living a life with suboptimal prospects can still be full of joy and value.
Physicians rarely engage in theoretical excursions such as the replaceability thesis. However, by virtue of their unique role in society physicians regularly participate in decisions that demand quality of life assessments. In the neonatal intensive care unit (NICU), these assessments are complicated by the preferences of parents who frequently interpret multiple congenital abnormalities as a sign that a reasonable quality-of-life will be impossible. The role of the physician should be to educate parents against these prejudices.
For centuries, the medical profession has endowed its members with the knowledge and skills required to treat disease and deformity. Physicians have often been the vanguard of technological mastery, increasingly charged with the onerous responsibility of determining when intervention is appropriate. Underlying this responsibility is a foundation of core principles, including beneficence, non-maleficence, and compassion.12 Unfortunately, conscious use of these principles is not often helpful when the best interests of patients are varied and apply to many relevant but competing parties. The challenge of applying core principles to complex cases at the beginning of life can hopefully engage the morality and empathy of the modern medical enterprise.
Neonatologists spend their careers in the NICU, but it is a foreign world to most people. Clinical encounters for parents are often novel and jarring experiences, where hopes and expectations of health and happiness can be threatened by the birth of even a mildly deformed or impaired child. Parents are almost always unprepared for premature or hazardous delivery. They often feel victimized, shocked, angry, and guilty. They may feel unworthy or unable to assume the role of caregiver.13 In negotiating the details of intensive care, neonatologists may confuse parents and thereby distort the balance of power. Thus, empathy is paramount when they render clinical decisions.14 Neonatologists must anticipate the vulnerability of parents, collaborate with them, and gently guide them through their decision, especially when parents are hostile or recalcitrant.
All physicians should discuss the standards of care appropriate to similar clinical situations. For instance, failure to treat an infant with a mild case of Down syndrome and correctable intestinal atresia is inconsistent with best medical practice and thus neglectful.15 Useful and comforting measures a physician can initiate include introducing parents to families who have encountered similar dilemmas, and connecting them with outreach organizations that help parents raise children with special needs. Similarly, searching for adoptive parents may reveal an abundance of families willing to raise such a child, which in turn would seem to undermine the moral acceptability of hastily engaging in selective infanticide.
The moral complexities of Baby Doe have forced physicians to deliberate the most responsible ways to implement new technologies. Federal regulations have met with significant resistance, especially by physicians who feel that the medical profession can meet the moral challenges of medicine without coercion. Such optimism is warranted if physicians fulfill their duty to explain to the public the ineradicable presence of disease, disability, and less-than-maximum utility in our society. At that point, they retain the right to advocate for the judicious and compassionate use of life-saving interventions. When physicians engage in collective moral discourse they can forge successful therapeutic alliances with their patients and their patients' families. Then, with collaborative and empathetic decision-making, they will make an increasingly crowded NICU a good place to live.
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