Infants, Ethical Issues with

Updated About encyclopedia.com content Print Article Share Article
views updated

INFANTS, ETHICAL ISSUES WITH

•••

The birth of a baby can be one of the most satisfying, fulfilling experiences of a parent's life or a couple's marriage. After months of infanticipating, the experiences connected with the first few hours and days of the baby's life can be intensely rewarding for the parents, providing them with joy, gratitude, and perhaps humility as they contemplate the new life that is now entrusted to them for care and support. If they are religious believers, they may be inclined to think of the baby's life as a divine gift and to regard their parental role as involving responsible stewardship over that gift. At the very least, they will probably be thankful that the baby has a normal brain, the correct number of fingers and toes, and the rest of a physical endowment that would suggest normal human development.

Unfortunately, in a small minority of cases the months of parental dreams and plans for a normal baby turn out to be false hope. In some instances, even when prenatal diagnosis has already indicated that the baby will not be normal, there may still be parental surprise and disappointment at the range of medical problems and the degree of neurologic impairment the child has. In other instances, when prenatal diagnosis was not done and the potential parents had no opportunity for anticipatory grief over the loss of a normal baby, the birth of a premature and/or congenitally disabled infant can have an enormous emotional impact on the parents that severely tests their most deeply held beliefs, values, and hopes for the future.

The birth of such a baby can also reflect the diversity of ethical perspectives that exist among parents, physicians, and other persons regarding the value of infants with life– threatening medical conditions, especially when the projected future lives of these children are filled with a mixture of neurologic impairments, mental and physical disabilities, and, sometimes, considerable medical uncertainty regarding the degree of those disabilities. For many persons, such cases raise important substantive questions: What is the moral status of infants with mental and physical disabilities? Should all of these infants receive life-sustaining medical interventions regardless of the severity of their medical conditions? What should be the ethical standard according to which a few infants would not receive life-sustaining efforts? Is there any moral difference between withholding and withdrawing life-sustaining treatments? Are there important moral differences between decisions about life-sustaining treatment in cases of severely disabled infants compared with cases of adults who have never been autonomous because of severe mental retardation? Would it be justifiable, in rare cases, intentionally to kill any of these infants?

Cases of premature and disabled infants also raise important procedural questions: Who should have the authority to make these life-and-death decisions? Should physicians, and in particular neonatologists, make these decisions because of their greater technical knowledge and experience with similar cases? Should the infant's parents decide because of their roles in conceiving and caring for the child, and because of their greater emotional and financial stake in the child's death or disabled life? Should a collective body (e.g., a pediatric ethics committee) make the borderline decisions?

In addition, important questions are sometimes raised about contextual and methodological matters related to decisions about the care of infants: What lessons can we learn about caring and nurturing from parents who have learned to cope with and transcend one of life's personal tragedies? Is a philosophical approach that focuses on principles, rights, interests, and obligations the correct model for ethical analysis? Do theological claims about the sanctity of life, the meaning of suffering, and the importance of stew-ardship over life have a significant place in decisions about the appropriate level of care for infants, whether normal or abnormal in some way? To what extent should the realities of medical economics influence the decision about whether a premature and severely disabled infant lives or dies? How much should decision makers in individual cases consider the implications of their decisions in terms of public policy?

This article has five parts: (1) a brief historical overview;(2) international perspectives among pediatricians; (3) alternative perspectives on the moral status of infants; (4) perspectives on abating life-sustaining treatment; and (5) the emerging mainstream ethical perspective. Additional information on some of these points is found in the other articles in this entry.

Historical Overview

Throughout history, as at the present time, the birth of a baby has often been the occasion for joy, celebration, and thanksgiving. In earlier centuries, the birth of a healthy, normal baby was frequently the occasion for celebration because the baby, especially if the infant was male, offered future promise for the family: another hunter for food supplies, another worker for the field or factory, another opportunity for continuing the family lineage. The birth of a baby was often an occasion for celebration for another reason: the mother had survived the dangers inherent in pregnancy and childbirth, dangers that posed a significant risk to maternal health and life in every pregnancy before the advent of modern medicine.

However, not all births were celebratory occasions. In many societies and in virtually all historical periods, very young infants, female infants, bastards, and infants and older children believed to be defective in some way were frequently killed. The intentional destruction of infants and children through starvation, drowning, strangulation, burning, smothering, poisoning, exposure, and a variety of lethal weapons was a tragically common practice. Such practices were widely accepted ways of dealing with unwanted children, with the responses of governments varying from required infanticidal practices (e.g., in Sparta), to acceptance of or at least indifference to the killing of female infants (e.g., in China and India), to considerable uncertainty as to how to punish parents who may have committed an illegal act by killing one of their children under questionable circumstances.

Mothers and fathers have historically had several possible reasons for killing one or more of their children. Some of them have killed for economic reasons: A dead child would mean one less mouth to feed. Others have killed their infants because of social customs and pressures: An illegitimate child, an extra child beyond a certain number, or another female child was especially vulnerable. Still other parents have killed their children because the infants were physically or mentally abnormal, with their congenital abnormalities being interpreted as works of the devil, signs of fate, punishment for the sins of the parents, or tricks played by witches (Weir).

Some of these older explanations of congenital disabilities seem strange now, but two features of traditional infanticidal practices remain a part of the modern world. First, infants are still sometimes killed by their parents or, perhaps more commonly, abandoned without food, shelter, or parental protection. No society is exempt from such events, with media reports of dead or abandoned babies coming from China, India, Brazil, the United States, Romania, and other countries. Second, even for parents who cannot imagine killing their own children, the birth of an extremely premature and/or severely disabled infant is a mixed blessing. For that reason, parental decisions about medical efforts to prolong a child's life frequently involve concerns about the future of the family as well as considerations about the welfare of the child.

In many parts of the world, such decisions, whether made by a child's parents or physicians, are strikingly similar to decisions made about sick and disabled children in earlier historical periods because many countries still lack the medicines, the medical and nursing personnel, and the medical technology that are common to the rest of the world. In technologically developed countries, by contrast, the development of neonatal intensive-care units (NICUs), neonatologists and other pediatric subspecialists, sophisticated medical technology, new medicines, and new surgical techniques has brought unprecedented opportunities and challenges to physicians, parents, nurses, and all other persons interested in prolonging the lives and improving the health of critically ill children. Likewise, changes in neonatal medicine since the 1970s have meant that physicians, parents, or some combination of health-care professionals in a hospital can sometimes decide that the appropriate course of moral action in a case is not to initiate or continue life-sustaining treatments, given the child's severe neurologic impairments and likelihood of continued suffering.

Such decisions—not to use medical technology to sustain an extremely premature or severely disabled infant's life—are usually difficult and sometimes controversial. In the United States, public and professional responses to publicized pediatric cases in the 1980s generated two efforts at regulating selective nontreatment decisions. The two attempts at regulation, while not always in conflict, reflected two quite different ethical perspectives regarding how and by whom selective nontreatment decisions should be made.

One effort at regulation took the form of two sets of published federal regulations during the administration of President Ronald Reagan. The Baby Doe regulations, first proposed in 1983, and the subsequent childabuse regulations, established in 1985, differed in legal philosophy, implementation, and influence. Yet both agreed on the ethical perspective that should govern life-and-death decisions made in NICUs and pediatric intensive-care units (PICUs): Every infant, unless permanently unconscious, irretrievably dying, or salvageable only with treatment that would be "virtually futile and inhumane," should be given life-sustaining treatment, no matter how small, young, or disabled the infant might be.

The other effort at regulation was made by the U.S. President's Commission for the Study of Ethical Problems in Medicine (1983), the American Academy of Pediatrics, and numerous writers on ethics in pediatric medicine. Given the complexity of some pediatric cases and the life-and-death nature of selective nontreatment decisions, the common recommendation was to have an ethics committee consult on the cases and give advice to the physicians in the cases. The ethical perspective at the heart of this recommendation was straightforward: In truly difficult cases, the most prudent procedure for decision making is the achievement of consensus by a multidisciplinary committee that is knowledgeable, impartial, emotionally stable, and consistent from case to case.

Similar efforts at regulating selective nontreatment decisions in NICUs and PICUs have not occurred in other countries having technological medicine. In Britain and Australia, for example, governments interested in regulating assisted reproduction technologies to protect pre-embryos have not had a similar interest in regulating selective nontreatment decisions to protect young infants, either from premature deaths or from profoundly impaired lives. Likewise, neither the governments nor the medical societies in these countries have chosen to establish pediatric ethics committees, preferring instead to leave decisions to abate life-sustaining treatment for young infants to the discretion of the physicians and parents of the children.

Nevertheless, some themes and problems are common as decision makers in technologically advanced countries confront the difficult choices presented by premature and disabled infants. First, the ongoing technological development of pediatrics (e.g., the use of exogenous surfactants and high-frequency oscillatory ventilation for treating pulmonary problems) has resulted in improved mortality and morbidity rates for numerous infants and young children. Second, unprecedented surgical techniques (e.g., surgery for short-bowel syndrome and for hypoplastic left ventricle) have resulted in the prolongation of life for many infants who would have died without surgery only a few years ago. Third, these technological and surgical achievements have created a trend in some pediatric subspecialties toward overtreatment of premature and disabled infants, a trend that seems to be contrary to the best interests of some of these children (Caplan et al.). Fourth, even with the technological progress in pediatrics, neonatologists and the parents with whom they work in individual cases are still frequently confronted with an inescapable problem: medical uncertainty regarding the degree and range of disability a neurologically impaired child will have, if the child survives with medical treatment (Hastings Center).

Compared with earlier historical periods, the period of technological medicine has produced unprecedented changes and challenges for parents, physicians, and other persons concerned about the care of infants. The rapidity and extent of the change is noticeable in the types of cases that now present the greatest ethical challenges for parents and physicians in NICUs. In the 1970s and 1980s, considerable debate centered on whether infants with Down's syndrome plus complications and infants with myelomeningocele should receive surgical correction of their physical abnormalities. In the 1990s these types of cases have largely been replaced as ethical challenges by other kinds: (1) cases of extremely premature neonates with birth weights below 600 grams, gestational ages of approximately twenty-four weeks, and severe cardiac, pulmonary, and neurologic impairments; (2) cases of very small and disabled neonates whose low birth weights and disabilities are the result of factors during pregnancy, such as maternal malnutrition, infection (e.g., HIV and AIDS), smoking, consumption of alcohol, or use of cocaine and other drugs; and (3) cases of neonates with anencephaly whose organs could be transplanted into other infants, if the parents of the anencephalic infants were to consent and the law were to permit the transplantation (Walters).

International Perspectives among Pediatricians

The roles of physicians, parents, and nurses in the care of premature and disabled infants vary significantly from country to country. In general, pediatricians in countries that in recent decades have been characterized by authoritarian or totalitarian political regimes tend to take a similar approach to decisions made in NICUs: The decisions to treat or not to treat are made by physicians with only minimal participation by parents, nurses, or other health professionals. By contrast, pediatricians in democratic societies tend to have a more democratic attitude toward decisions made in NICUs: With some variation from physician to physician, the decisions to treat or not to treat are often made in consultation with the parents of the imperiled infants, with some physicians also finding merit in having pediatric ethics committees consult on some of the truly difficult decisions.

For example, one study indicated significant differences between pediatricians in Poland and pediatricians in Australia. The majority of both groups of physicians indicated that they had been confronted with the necessity of making decisions regarding the withholding or withdrawing of life-sustaining treatment from severely disabled infants. However, their views regarding the substantive and procedural features of such decisions were quite different. Whereas virtually all the pediatricians surveyed in Australia (98.2 %) indicated that they did not believe that "every possible effort" should be made to sustain life in every case, half of the pediatricians surveyed in Poland (50 %) stated that they thought that all possible efforts at sustaining life should be made in every case. Regarding specific diagnostic cases, significant numbers of Australian pediatricians thought that life-sustaining treatment could be withheld or withdrawn in cases of anencephaly and microcephaly (29.7 % of the responding physicians), spina bifida and myelomeningocele(25.2 %), extreme prematurity (9.0 %), Down's syndrome with complications (16.2 %), and brain damage with projected mental retardation (26.1 %). By contrast, the pediatricians in Poland, while agreeing with the Australian physicians regarding cases of extreme prematurity and brain damage, were much more reluctant to abate life-sustaining treatment for infants having microcephaly, spina bifida, or Down's syndrome (Szawarski and Tulczynski).

The differences between the Australian and Polish pediatricians were even more significant when they were asked about the procedural aspects of decisions that would probably result in an infant's death. The majority of responding Australian pediatricians indicated that they discussed such decisions with other physicians (90.9 %), the parents of the infant (90.1 %), and nurses (84.7 %). The Polish pediatricians, by contrast, almost always consulted with other physicians (99.0 %) but rarely discussed the decisions with the parents (8.1 %) or nurses (4.3 %).

Another study suggested that there are differences among pediatricians in the United States, Sweden, Britain, and Australia on both substantive and procedural aspects of selective nontreatment decisions. According to this interpretive study, the dominant practice among American pediatricians, especially neonatologists, is to initiate aggressive life-sustaining treatments early, continue those medical interventions while diagnostic tests are being done and various pediatric specialists are consulted, and talk with parents about the alternative of abating treatment only when the parents bring up the subject or when a grim prognosis becomes increasingly clear. This perspective is described as a "wait until certainty" approach, an approach involving a clear ethical choice: Saving an infant who will have severe- to-profound disabilities is preferable to permitting the death of an infant who could have lived a tolerable life. This strategy ensures that all errors are in one direction: the promotion of the infant's life, even a severely disabled life. Treatment that sustains the infant's life can therefore be terminated only when death or profoundly impaired life is inevitable (Rhoden).

This study suggests that pediatricians in Sweden have a different perspective, one that is described as a "statistical prognostic" strategy. This approach seeks to minimize the number of infants whose deaths would come slowly as well as those whose lives would be characterized by profound disabilities. At the risk of sacrificing some potentially normal infants to avoid prolonging the lives of severely impaired infants, this approach uses statistical data, like birth weight, gestational age, and early diagnostic tests, to make selective nontreatment decisions. This strategy also ensures that all errors are in one direction: the promotion of healthy life, even at the cost of allowing some infants to die who could have lived with disabling conditions.

Pediatricians in Britain and Australia are described in the study as having medical and ethical perspectives that frequently differ from those of their American and Swedish counterparts. In contrast to many pediatricians in the United States, pediatricians in Britain and Australia are willing to withhold or withdraw treatment with much less prognostic certainty. Yet in contrast to many pediatricians in Sweden, British and Australian pediatricians are willing to engage in time-limited trials to give various treatments a chance to work, even when the child being treated is likely to have ongoing disabilities. Called an "individualized prognostic" strategy, this approach reflects an ethical perspective that realizes the inherent uncertainty in medicine, permits some role for parental discretion, and affirms the appropriateness of selective nontreatment decisions once a child's prognosis appears poor (Rhoden).

In much of the world, the ethical perspectives among physicians are quite different from the approaches described above because the provision of care to infants takes place outside the confines of technological medicine. In the People's Republic of China, India, the countries of the former Soviet Union, and many of the other countries in the world, the differences in medical management that have just been described have no significance. The shortages of medicine, the obsolescence of medical equipment, the inadequacies of prenatal care, the limited number of pediatricians, and the ongoing problems of malnutrition and infectious disease contribute to a social context in which the lives of infants are frequently short and often characterized by disease and disability.

Alternative Perspectives on the Moral Status of Infants

Ethical perspectives on the care of infants are significantly influenced by views that are held regarding the ontological status and moral standing of infants, whether premature, disabled, or normal. What kind of entity is it whose life, health status, or death is at stake in the decisions made by physicians and/or parents? Is a neonate, in terms of ontological status, the same as an older child and an adult? Does an infant count as a person, in the same way that you and I count as persons? Or are questions about personhood irrelevant in terms of the moral standing that adults choose to grant infants? In terms of moral standing, what kinds of moral rights do infants possess? Do human infants possess full moral standing, making them morally equal to adult persons? Is the moral standing of neonates to be understood as somehow less than that of human adults but more than of human fetuses, or are fetuses, neonates, and adults to be understood as morally the same?

For many philosophers in recent years, questions related to the moral standing of infants have been addressed in the broader context of a discussion about ontological status and, more specifically, the meaning of personhood. One approach is to define person as meaning a living being with full moral standing. According to this definition, all persons have such standing, leaving open the question of just which characteristics give that standing.

Given this general philosophical perspective on personhood, at least three positions can be identified that link the ontological status of neonates with the moral standard granted to infants. The first position holds that all neonates, whether normal or neurologically impaired, count as actual persons in the same way that you and I count as persons. According to this view, the personhood of neonates is merely an extension of the personhood possessed earlier by fetuses. With this ontological status, neonates, like all other actual persons, have the moral right not to be killed or prematurely allowed to die, since the possession of personhood entails full moral standing, regardless of the age of the person. Personhood, according to this view, is based on genetic code or some other characteristic possessed at conception, not on possession of consciousness, self-awareness, rationality, or any other neurological characteristic.

The second position holds that in order to count as persons, infants (and other beings, whether human or nonhuman) must possess the intrinsic qualities or traits often defined by philosophers as being the threefold combination of consciousness, self-awareness, and at least minimum rationality (Feinberg). If infants lack these core properties, they have an ontological status that is more similar to the status of human fetuses than to the status of older children or adults. Holders of this view claim that all neonates, including normal babies, fail to pass the neurologic tests for personhood and are thus to be classified as nonpersons. In this view, all neonates lack the cognitive qualities that make a human into a person. In addition, the notion of potential personhood is discarded as flawed, largely because the advocates of this second position argue that personhood cannot be possessed in varying degrees. Holders of this second view also claim that only those who have the neurological characteristics of persons possess the rights of persons, including the right not to be killed or prematurely allowed to die. The result, in terms of the moral standing of neonates, is straightforward: Neonates do not possess the moral rights of persons, leaving them at risk of being killed or prematurely allowed to die unless their parents and physicians are motivated by psychological or legal considerations to sustain their lives (Tooley).

The third position stands between the other positions. It identifies the same neurological characteristics of personhood, but according to this view, most neonates (those lacking severe neurologic impairment) are to be regarded as potential persons, not yet possessing the ontological status of actual persons but on the way to the possession of the core properties of personhood through the normal course of human development. Agreeing with advocates of the first two positions on the linkage between ontological status and moral standing, philosophers holding the third position maintain that when infants develop and subsequently become persons, they will acquire full moral standing. Until that time, including during the neonatal period, they are regarded as having a prima facie claim not to be killed, prematurely allowed to die, or significantly harmed in some other way, precisely because they will subsequently and naturally become actual persons.

The differences in these philosophical views have practical consequences in terms of the ways that adults value the lives of infants, including infants who may be extremely premature or severely disabled. Advocates of the first position tend to call for life-sustaining treatment to be administered to all infants in NICUs regardless of birth weight, gestational age, or neurological status, because all infants are actual persons in possession of the full panoply of moral rights common to persons. By contrast, any parents or physicians in NICUs who regard neonates as nonpersons (and who believe that only persons bear the rights borne by persons) are likely to be ready to withhold or withdraw treatment much more quickly, if the law permits them to do so, because the infant lives that are lost do not yet count for much morally. For advocates of the third position, the concept of potential personhood provides an intellectual framework in which difficult prognostic judgments make some sense. In this view, at least part of the difficulty in making decisions to provide life-sustaining treatment or to abate treatment, especially in cases of severe neurologic impairment, has to do with judgments about whether a particular baby has the potential even to become a person in the normal course of his or her development.

Other perspectives on the moral status of infants, some of which are grounded in theological ethics, suggest that the philosophical debate about the personhood of infants is intellectually restrictive and of little practical significance. For example, one fairly common view is that the moral standing of infants cannot depend on whether they meet a philosophically strict definition of personhood, because all infants fail to meet that standard. Rather, what is important is a social understanding of person according to which infants are regarded by their parents, physicians, and others as if they were persons. This social sense of personhood involves the imputing of personlike rights to infants because of their special roles in families and in society. The practical consequence of this view is that infants, who are given the imputed status of person in a social sense, have the same kind of moral standing as older human beings who are persons in a more formal sense (Engelhardt).

Another widely held view is that the personhood question simply does not apply to infants, either in a strict sense or in a social sense. Rather, what is important is that infants are understood to have moral standing as fellow human beings. Advocates of this view may regard fetuses and infants as having equal moral standing as human beings, or they may have a developmental view in which viable fetuses and infants, but not nonviable fetuses, have equal moral standing as human beings. Either way, infants are regarded as having the same kinds of moral rights that older human beings have, including the right not to be killed or allowed to die prematurely unless, in unusual cases, the burdens of continued life are regarded as outweighing the benefits of that life to the child (Fletcher). Holders of this view give the same moral standing to infants and fetuses as do holders of the first position above, but deny that these beings have to be called persons.

The personhood approach to the moral status of infants, according to another theological view, is unrelated to the possession of the neurological characteristics identified with personhood discussed above for another reason. The limiting of an infant's value to the question of whether that infant possesses the intrinsic properties of personhood entirely omits another approach to the understanding of the value that infants have: namely, a relational view of value that results from interpersonal bonding, affection, and care by parents and other adults. Even when an infant has a future that will, because of neurologic impairments, be characterized by developmental delay and mental retardation, the parents of the child still usually go through a process of bonding with the child. That process of bonding, which involves the replacement of a hoped-for child with a healthy attachment to the child one has been given, results in a valuing of the child by parents that is surely equal to the valuing of normal children by their parents (May).

A related view is that philosophical arguments about the moral status of infants need to be supplemented, if not replaced, by an experiential ethic of care. This view emphasizes the importance of the various perspectives that parents, physicians, nurses, and other persons bring to pediatric cases. Rather than focusing on the ontological and moral status of infants, most commonly with questions related to the possession of personhood and moral rights, this approach concentrates on the various values and virtues present, or possible, in the context of decision making about an infant's impending death or projected life with disabilities. The practical result is that questions in difficult cases are raised not only about what should be done for the patient but also about what kinds of moral agents the parents, physicians, and nurses should be as they provide care for an imperiled infant (Reich).

Ethical Perspectives on Abating Life-Sustaining Treatment

The ethical perspective that became enacted into the Baby Doe regulations and child abuse regulations was only one of the ethical perspectives on the medical care of infants that received considerable attention in the United States in the 1970s–1990s. Other ethical perspectives have also been widely held, both before and after the federal regulations became policy.

For example, for some persons the important ethical question is not whether a given infant can be salvaged through medical treatment. Rather, the important question is what quality of life the child will probably have later, especially if the child's future is predicted to be dominated by severe-to-profound neurologic impairments, multiple surgeries, and numerous other medical problems. The question is sometimes posed in terms of the future relational potential possessed by a child with severe neurologic impairments, with the moral judgment being that an infant who lacks relational capacity will never have the quality of life that would justify the continuation of the child's life (McCormick).

A closely related ethical perspective focuses on a child's best interests. For persons holding this position, the important question is whether the life-sustaining treatment that could be given to imperiled newborns will, on balance, provide the infants with more benefits than burdens. Since quality-of-life projections can sometimes extend to include persons other than the patient, this position's strength is in framing the ethical debate primarily in terms of the patient's best interests, not the interests of the family or society (U.S. President's Commission).

Another ethical perspective emphasizes procedural issues. According to this view, the most important aspect of decisions not to sustain some infants' lives is the question of who should make these difficult decisions. Advocates of this position maintain that in most cases, the parents of a premature or disabled infant are the appropriate decision makers.

A very different ethical perspective on selective treatment decisions also has some advocates. As described in the previous section, some philosophers hold that life-sustaining treatment can morally be withheld or withdrawn from any infant, regardless of birth weight or disability, because the only deaths that matter are the deaths of persons, and no infants meet the requirements of personhood.

Three of these ethical perspectives continue to play major roles in selective nontreatment decisions, with the dominant perspective in individual cases varying from hospital to hospital, physician to physician, parent to parent, case to case. The perspective that calls for life-sustaining treatment to be administered to all infants who are conscious, not dying, and for whom treatment is not "virtually futile and inhumane" remains influential, even if the federal regulations that reflect this perspective have been largely unenforced throughout the country. The reasons for its continuing influence are twofold. First, this perspective is consistent with the reasons that motivate neonatologists to do the work they do: to prolong and enhance the lives of the youngest, smallest, most disabled, and most vulnerable human beings among us. Second, this perspective offers the simplest way of dealing with the multiple problems that constitute the ethics lab known as the NICU: It minimizes the factor of medical and moral uncertainty in cases, the role of parents as decision makers, and any considerations of the harm that may be done through prolonged, aggressive efforts to salvage imperiled young lives.

The second perspective that remains influential is the position that emphasizes the role of parents as decision makers. Advocates of this view rarely suggest that parents alone should make the selective nontreatment decisions that could result in the deaths of their children, or that parents should be given unlimited discretion in making such decisions. Rather, the claim that is often made is that parents should, in response to appropriate medical information and advice, have reasonable discretion in making a life-and-death decision regarding their child in the NICU, subject to certain ethical and legal constraints. They are the ones, after all, who may be saddled with the enormous financial costs of neonatal intensive care. They are the ones, in addition to the child, who will have to deal with the child's ongoing medical problems, repeated hospitalizations and surgeries, neurologic abnormalities, and developmental delays. They are the ones who will have to struggle to sustain their marriage, their family life, their careers, and their own physical and mental health.

The third perspective that remains influential is the patient's-best-interests position. Advocates of this position acknowledge the medical and moral uncertainty inherent in many cases, affirm an important role for parents as decision makers, and recognize that the same medical and surgical interventions that produce great benefit for some patients can produce undue harm for others. In contrast to the parental perspective, proponents of this view emphasize that the focal point of decision making in neonatal and pediatric cases should be the best interests of the patient, even when the patient's interests conflict with the interests of the parents. In this manner, the patient's-best-interests position emphasizes the linkage between life-sustaining medical treatment and patient-centered considerations regarding the quality of life—without broadening quality-of-life judgments to include the family, the society, or arbitrary standards for normalcy and acceptability, as quality-of-life projections sometimes do.

The Emerging Mainstream Perspective

If any of these positions can be correctly designated as the mainstream ethical position, at least in the United States, it is the patient's-best-interests position. Advocates of this position are concerned about the treatment-related harms that sometimes occur when neonatologists and other pediatric subspecialists persist, perhaps under the influence of the federal regulations, in overtreating infants who have extremely low birth weights and severe disabling conditions but who are neither unconscious nor dying. At the same time, proponents of the best-interests view are reluctant to grant the parents of premature and disabled infants as much discretion in deciding to abate life-sustaining treatment as some parents would like to have.

In clinical cases, the best-interests position relies on eight variables that help to determine whether to initiate, continue, or abate life-sustaining treatment: (1) the severity of the patient's medical condition, as determined by diagnostic evaluation and comparison with (a) all infants and (b) infants having the same medical condition; (2) the achievability of curative or corrective treatment, in an effort to determine what is meant by beneficial treatment in a given case; (3) the important medical goals in the case, such as the prolongation of life, the effective relief of pain and other suffering, and the amelioration of disabling conditions; (4) the presence of serious neurologic impairments, such as permanent unconsciousness or severe mental retardation; (5) the extent of the infant's suffering, as determined by the signs of suffering that infants send by means of elevated blood pressure, elevated heart rate, degree of agitation, and crying; (6) the multiplicity of other serious medical problems, with the most serious cases usually involving a combination of neurologic, cardiac, pulmonary, renal, and other medical complications; (7) the life expectancy of the infant, because some of the severe congenital anomalies involve a life expectancy of only a few weeks or months; and (8) the proportionality of treatment-related benefits and burdens to the infant, a medical and ethical "bottom line" for determining whether life-sustaining treatment or the abatement of such treatment is in a particular infant's best interests (Weir and Bale).

Even with these variables, the ethical analysis of cases involving neonates or other young pediatric patients is anything but easy. Although there are numerous cases about which almost everyone agrees, there continue to be many cases that combine unprecedented medical and moral territory, advances in medical management and technology, medical uncertainty, and ethical conflicts between physicians and parents in such a way as to present serious ethical challenges to all the parties involved in the cases. In such instances, the discernment of the infant's best interests can be a challenging and humbling experience.

robert f. weir (1995)

bibliography revised

SEE ALSO: Abuse, Interpersonal: Child Abuse; Care: Contemporary Ethics of ; Children; Clinical Ethics; Compassionate Love; Embryo and Fetus; Family and Family Medicine; Feminism; Genetic Testing and Screening; Life, Quality of: Quality of Life in Clinical Decisions; Maternal-Fetal Relationship; Medicaid; Moral Status; Pediatrics; Research Policy, Risk and Vulnerable Groups; Sexism

BIBLIOGRAPHY

Bermudez, Jose Luis. 1996. "The Moral Significance of Birth." Ethics 106(2): 378–403.

Caplan, Arthur L.; Blank, Robert H.; and Merrick, Janna C., eds. 1992. Compelled Compassion: Government Intervention in the Treatment of Critically Ill Newborns. Totowa, NJ: Humana.

Carter, Brian S., and Stahlman, Mildred. 2001. "Reflections on Neonatal Intensive Care in the U.S.: Limited Success or Success with Limits?" Journal of Clinical Ethics 12(3): 215–222.

Dickenson, Donna L. 2002. Ethical Issues in Maternal-Fetal Medicine. New York: Cambridge University Press.

Engelhardt, H. Tristram, Jr. 1978. "Medicine and the Concept of Person." In Ethical Issues in Death and Dying, pp. 271–284, ed. Tom Beauchamp and Seymour Perlin. Englewood Cliffs, NJ: Prentice-Hall.

Feinberg, Joel. 1986. "Abortion." In Matters of Life and Death: New Introductory Essays in Moral Philosophy, 2nd edition, pp. 256–293, ed. Tom L. Beauchamp and Tom Regan. New York: Random House.

Fletcher, John C. 1975. "Abortion, Euthanasia, and Care of Defective Newborns." New England Journal of Medicine 292(2): 75–78.

Frader, Joel. 1986. "Forgoing Life-Sustaining Food and Water: Newborns." In By No Extraordinary Means: The Choice to Forgo Life-Sustaining Food and Water, pp. 180–185, ed. Joanne Lynn. Bloomington: Indiana University Press.

Ford, Norman M. 2002. The Prenatal Person: Ethics from Conception to Birth. Williston, VT: Blackwell Publishers.

Franck, Linda, and Lefrak, Linda. 2001. "For Crying Out Loud: The Ethical Treatment of Infants' Pain." Journal of Clinical Ethics 12(3): 275–281.

Hastings Center. 1987. "Imperiled Newborns." Hastings Center Report 17(6): 5–32.

Headings, Verle. 2000. "Comment: Collaborative Decision Making with HIV-Infected Mothers." Journal of Clinical Ethics 11(2): 126–127.

Horan, Dennis J., and Delahoyde, Melinda, eds. 1982. Infanticide and the Handicapped Newborn. Provo, Utah: Brigham Young University Press.

Kipnis, Kenneth, and Diamond, Milton. 1998. "Pediatric Ethics and the Surgical Assignment of Sex." Journal of Clinical Ethics 9(4): 398–410

Koch, Tom, and Ridgley, Mark. 1998. "Distanced Perspectives: Aids, Anencephaly, and AHP." Theoretical Medicine 19(1): 47–58.

Kopelman, Loretta M.; Irons, Thomas G.; and Kopelman, Arthur E. 1988. "Neonatologists Judge the 'Baby Doe' Regulations.'" New England Journal of Medicine 318(11): 677–683.

Kuhse, Helga, and Singer, Peter. 1985. Should the Baby Live?: The Problem of Handicapped Infants. Oxford: Oxford University Press.

Magnet, Joseph E., and Kluge, Eike-Henner W. 1985. Withholding Treatment from Defective Newborn Children. Cowansville, Quebec: Brown Legal Publications.

May, William F. 1984. "Parenting, Bonding, and Valuing the Retarded." In Ethics and Mental Retardation, pp. 141–160, ed. Loretta M. Kopelman and John C. Moskop. Dordrecht, Netherlands: D. Reidel.

McCormick, Richard A. 1974. "To Save or Let Die: The Dilemma of Modern Medicine." Journal of the American Medical Association 229(2): 172–176.

McMahan, Jeff. 2002. The Ethics of Killing: Problems at the Margins of Life. New York: Oxford University Press.

Murray, Thomas H., and Caplan, Arthur L., eds. 1985. Which Babies Shall Live? Humanistic Dimensions of the Care of Imperiled Newborns. Clifton, NJ: Humana.

Paris, John J.; Crone, Robert K.; and Reardon, Frank. 1990. "Physicians' Refusal of Requested Treatment: The Case of Baby L." New England Journal of Medicine 322(14): 1012–1015.

Reich, Warren Thomas. 1987. "Caring for Life in the First of It: Moral Paradigms for Perinatal and Neonatal Ethics." Seminars in Perinatology 11(3): 279–287.

Rhoden, Nancy K. 1986. "Treating Baby Doe: The Ethics of Uncertainty." Hastings Center Report 16(4): 34–42.

Rhoden, Nancy K., and Arras, John D. 1985. "Withholding Treatment from Baby Doe: From Discrimination to Child Abuse." Milbank Memorial Fund Quarterly 63(1): 18–51.

Shelp, Earl E. 1986. Born to Die? Deciding the Fate of Critically Ill Newborns. New York: Free Press.

Shinnar, Shlomo, and Arras, John D. 1989. "Ethical Issues in the Use of Anencephalic Infants as Organ Donors." Neurologic Clinics 7(4): 729–743.

Spence, K. 1998. "Ethical Issues for Neonatal Nurses." Nursing Ethics 5(3): 206–17.

Strong, Carson. 1984. "The Neonatologist's Duty to Patient and Parents." Hastings Center Report 14(4): 10–16.

Szawarski, Zbigniew, and Tulczynski, Aleksander. 1988. "Treatment of Defective Newborns—A Survey of Paediatricians in Poland." Journal of Medical Ethics 14(1): 11–17.

Todres, I. David; Guillemin, Jeanne; Grodin, Michael A.; and Batten, Dick. 1988. "Life-Saving Therapy for Newborns: A Questionnaire Survey in the State of Massachusetts." Pediatrics 81(5): 643–649.

Tooley, Michael. 1983. Abortion and Infanticide. Oxford: Clarendon Press.

U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1983. "Seriously Ill Newborns." In Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions, pp. 197–229. Washington, D.C.: U.S. Government Printing Office.

Walters, James W. 1991. "Report from North America: Anencephalic Infants as Organ Sources." Bioethics 5(4): 326–341.

Weir, Robert F. 1984. Selective Nontreatment of Handicapped Newborns: Moral Dilemmas in Neonatal Medicine. New York: Oxford University Press.

Weir, Robert F. 1996. Selective Nontreatment of Handicapped Newborns: Moral Dilemmas in Neonatal Medicine. New York: Oxford University Press.

Weir, Robert F., and Bale, James F., Jr. 1989. "Selective Nontreatment of Neurologically Impaired Neonates." Neurologic Clinics 7(4): 807–822.