Current Moral Priorities and Decision Making in Neonatal-Perinatal Medicine
Robert J. Boyle
▪ GOALS OF NEONATAL-PERINATAL MEDICINE
In the first part of this chapter, broad goals and moral priorities of neonatal-perinatal medicine (NPM) are discussed in relation to patients and society in developed and developing nations. In the second part, some specific ethical issues that frequently arise in clinical decision making in the neonatal period are reviewed.
Medicine is a goal-oriented profession. One approach might argue that healing is the sole and overriding goal of medicine. This view is unconvincing, because some valid goals of medicine (e.g., prevention) cannot be collapsed into healing. The practice of NPM illustrates that medicine has multiple, complex, and sometimes conflicting goals:
To save life and cure disease
To relieve pain, suffering, and disability
To rehabilitate and restore function
To prevent disease
To improve the quality of living and dying
To seek new knowledge
▪ SOCIETAL AND PROFESSIONAL ISSUES
Medicine is accountable to society and to the international community. Critics may validly argue that American medicine and public policy have neglected primary prevention and fostered the technologic imperative. To counter these criticisms, the moral priorities of NPM specialists need to include advocacy for comprehensive prenatal care, improved nutrition, prevention of premature delivery, and appropriate family support and services for the infant after discharge. NPM in the United States is also part of a global community of science, medicine, and humanitarian outreach. The moral priorities of the field ought to include commitment to global infant health. Nations where newborns are in greatest danger of death or lifelong disability can benefit from transferable knowledge and technology, for example, maternal folic acid supplementation, prevention of HIV transmission, vitamin K prophylaxis, eye prophylaxis for gonorrhea, and prevention of neonatal tetanus.
For the United States, epidemiologic data (see also Chapter 1) highlight moral issues that relate to public policy, program funding, and professional guidelines:
Increased rates of preterm delivery, especially in births 32 to 36 weeks of gestation
Dramatic differences in prematurity rates for various racial and ethnic groups
Increasing use of assisted reproductive technologies leading to an increase in multiple gestation and preterm delivery
Significantly higher rates of prematurity and mortality compared to other industrialized nations
Absent or inadequate health insurance for women of childbearing age
Decreased access to family planning and prenatal and postnatal care compared to other industrialized nations
Infertile individuals who want their own genetic child suffer psychologically and spiritually. Fertility treatments have allowed literally millions of women to have children who otherwise would not have been able to conceive. However, there are high costs, risks, and potential harms associated with these treatments. To date, reliance on professional self-regulation has not been effective in reducing multifetal pregnancy in the United States. There is currently a debate about whether social controls of infertility treatment and research are fitting for a pluralistic society that highly values reproductive liberty.
Following Buchanan, we propose that in a pluralistic democracy, the relation between society and medicine ought to be understood as a self-correcting contract or bargain (1). Instead of resting on one supreme value easily captured by ideology, the contract reflects a commonwealth of values. These values govern the complex goals of medicine and interests of society in health. A commonwealth has a primary locus of loyalty. In this society, the preeminent value is fidelity to patients or loyalty to the patient at hand. Using the right procedural principles, patient-centered medicine is not inconsistent with viewing the patient in a population with needs for a finite supply of expensive community health care resources (2). Within constraints of fidelity to patients and their rights, physicians ought to promote the welfare of the many, to practice fairness in access and distribution of resources, and to be efficient and effective in their practices. Physicians in this society are also members of a scientific community with a high standard of evidence in practicing medicine. Guided by these values, society grants the profession a privileged place, permits its members to earn high incomes, and subsidizes their training. In return, society expects the net health benefits of pursuit of the goals of medicine to outweigh the net costs. Over the past 15 to 20 years, there has been a dramatic increase in the number of neonatal intensive care units (NICUs) in the United States. NICUs are often significant profit centers for a hospital, and in an academic institution, the income from the NICU may be a major source of income for the entire Pediatric Department. However, the increasing investment in perinatal-neonatal care has not produced proportional improvements in crude infant survival and low birth weight.
▪ ETHICS AND MORAL DELIBERATION
Ethics is a body of practical knowledge composed of principles and values, judgments about cases and policies, and beliefs and theories about the world and persons (3). John Dewey’s view of the main purpose of ethics is integration of beliefs about the world with beliefs about the values and purposes that should direct human conduct (4). Decision making for infants and children should follow the same general approaches taken for all patients who are unable to make decisions for themselves.
Making judgments in novel situations can lead to change of background beliefs and practices. Since the advent of modern neonatal care in the 1960s, rapid advances in technology and aggressive care of smaller and sicker neonates have focused philosophical, theologic, professional, legal, consumer, and media attention (both positive and negative) on the use of technology and the processes for decision making in life or death choices for newborns. One can trace changes in background beliefs and values in the history of ethics in neonatal decision making using “landmark” cases in which medical decisions for infants have been scrutinized by the United States government or the legal system. Table 8.1 provides a sample of important cases, events, articles, and studies in that history.
Neonatologists, nurses, and parents of newborns today stand on the cumulative moral experience of the past. The process for decision making in NPM is more transparent and shared between clinicians and parents than in the past. However, it is never immune from confusion, especially when cultural beliefs about medicine
collide. Practitioners are arguably better trained to identify ethical issues, participate in shared decision making, and seek help with ethical problems. For example, most try to be empathetic, nonbiased, and honest in disclosing a poor or uncertain prognosis to anxious parents.
collide. Practitioners are arguably better trained to identify ethical issues, participate in shared decision making, and seek help with ethical problems. For example, most try to be empathetic, nonbiased, and honest in disclosing a poor or uncertain prognosis to anxious parents.
TABLE 8.1 Landmark Cases in Neonatal Ethics | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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Neonatologists, nurses, and their colleagues are fallible. They have made serious mistakes in excluding parents from decisions and imputing guilt to them for wanting to withdraw treatment (5). Some events and cases test the limits of moral concepts: the best interests of the infant, parental autonomy, professional integrity, futility, fairness in use of resources, or quality of life. These cases brew storms that can throw experienced neonatologists, nurses, other staff, parents, and administrators off balance and into conflict with one another. Ethics helps human beings to keep enough balance, when taking hazardous, puzzling, or new paths in social and personal life, to maintain moral insight and equilibrium.
▪ CULTURAL AND RELIGIOUS DIVERSITY
Ethics is a self-correcting, constantly evolving body of practical knowledge. Therefore, open societies require a public process of debate about continuity and change in the moral aspects of social and professional practices. The United States is now the world’s most diverse religious and cultural society. These differences are very difficult to sort out in debate about ethics. To change public policy in this society, faith-based reasons standing alone are insufficient. Secular and presumably rational reasons are required to persuade a court, legislature, or commission. In debatable health care decisions, we see cases involving newborns that break down the limits of rationality. For example, should physicians continue to respect parents’ faith-based rejection of futility of treatment when the baby has total intestinal necrosis or renal agenesis and pulmonary hypoplasia? In our view, the case of Baby K (6) shows that the federal courts can approve parental faith-based demands as a legally justified reason to continue futile treatment of an anencephalic newborn, because the society has been unwilling to ration resources for this category of newborns.
Cross-cultural issues deeply complicate debate on ethics. For example, should any moral weight be given to a request to withdraw life support if the parents of a neonate are immigrants from a society with very different moral beliefs about medicine and what constitutes a seriously impaired newborn? Should weight be given to parents’ religious views when the infant is in pain and not benefiting from additional procedures and the parents flatly reject the concept of futility, relying instead on faith in miracles?
This chapter presents a broadly pragmatic approach to ethics and to cross-cultural issues in ethical debates. Moral norms and ways of life are, in fact, relative to culture and personality. However, cultural and psychological relativity does not drain ethics of content or moral force. Although ethics is a phenomenon within and not independent of human experience, it has objectivity in two senses. First, ethics is objective as a growing and evolving body of knowledge about practices in society and the professions. Secondly, the basic imperatives of ethics are “no less objective than law or medicine” (3) when it comes to destructive acts like murder, torture, genocide, rape, cruelty for its own sake, and so forth. Such acts “violate our most basic convictions” about the intrinsic value of human life and community. As Benjamin writes, “If these things aren’t wrong, nothing is” (3). Some argue that moral judgments are not binding across cultural boundaries or that ethics is “merely” a matter of personal taste. If ethics is merely subjective or relative, there is no basis for a moral judgment about any horrific act that occurs in subcultures or beyond one’s own culture, such as forcing children to wage war against their own people or to suffer loss of limb or life. The case of Baby K ought not be judged to exemplify “horrific acts,” because the parents’ intentions are loving and not destructive. The moral failure in these cases is societal in its failure to assume responsibility for setting democratically debated limits on health care resources. Societal failures can result in horrific consequences, but the parents and staff involved in these cases do not deserve moral blame.
Working through Ethical Problems
Although important moral values and principles are binding, there is no prefabricated way to work through ethical problems in cases or events when principles collide. When compared with highly theoretical or case-by-case approaches, the method of “wide reflective equilibrium” (7) has proven useful in bioethics. In this approach, one weighs ethical problems in cases by creating a dialogue (internally or externally) that moves between three interactive elements: the values and principles at stake, the problem at hand, and relevant background beliefs and theories.
“Principalism” is a dialectical method used widely in ethics courses and the literature of neonatal ethics, which analyzes ethical problems in a framework of prima facie principles of biomedical ethics (8). However, a method that moves only between values or principles and the problem at hand lacks larger constraints and correctives. Cultural influences and personal bias are at work in selecting principles and putting them to work in cases. Judgments made in past cases, such as Baby K (6) and Baby Doe (9), are fallible and need evaluation. Background beliefs and theories are sources of critical distance and constraint—beliefs and theories about the nature of personhood, community, the world as revealed by science and metaphysics, human psychology, sociology, and political and economic behavior; the nature of nonhuman animals, and so forth. In short, our uses of principles and judgments in cases ought to make sense in terms of intelligible background beliefs and in-depth knowledge of the issues at hand.
Current neonatal intensive care practice is a complex, multidisciplinary, multispecialty approach that can be confusing to both clinicians and families: frequent changes of nursing, resident, and attending staff; frequent shift turnovers; poor communication among team members. The clinical team should have a plan of care or possible options for care agreed upon before discussion with the family. Clarity, transparency, and openness to family input are important to communication.
When parents and clinicians are unable to reach agreement on an approach to care, additional resources should be available to assist the process:
Social worker.
Chaplains.
Parent support groups.
Ethics Committees—Committee process varies widely from institution to institution in terms of membership, involvement of family, and decision-making models (10).
Ethics Consultation Service—available to review the situation with those involved, provide background or policy information, facilitate communication, and, when necessary, bring the parties together to work toward a consensus. In most institutions, the committee or consultation service recommendations are advisory rather than binding (10).
Moral Status of the Newborn
Part of the evolution in clinical ethics in NPM has involved ascribing greater moral status and protection at birth to seriously ill newborns. There has been a dramatic transition from frequent nontreatment of trisomy 21 (11) to the Baby Doe Rules (12) and support for appropriate assessment of extremely-low-birth-weight (ELBW) infants (13). However, there remains a philosophical impression that decisions to withhold or withdraw treatment for newborns, especially the extremely premature newborn, may be less troublesome than are decisions for older children and adults, because the newborn does not have the same moral worth or is not fully a person. Tooley (14) argued that because a newborn lacks advanced brain function or has no self-consciousness, ability to suffer, or sense of the future, it should not be considered a person. Engelhardt (15) agrees that neonates are not persons in the strict sense at the time but affirms that they are persons in a social and cultural sense. Others have further defined this view, identifying the bonding, affection, and care given newborns by parents and other adults (16). Janvier has documented that neonatologists, as well as other physicians, lawyers, and ethicists, would withhold resuscitation or aggressive care at the request of parents of an extremely premature infant more readily than for an older infant, young child, or adult with far worse prognoses for survival and/or long-term function. The decision for the premature is similar instead to that for the very elderly, demented patient (17,18,19). These authors suggest this reflects a “greater sense of responsibility, guilt, or … moral culpability in the case of the disabled newborn patient.” The older child, “already here,” would possibly die without therapy, but any disability was due to his or her disease. The premature may be seen as “not yet here” in terms
of relationship to others, interactions, etc. If the premature infant survives with significant disability, the clinician may perceive that “But for our actions, there would be no disabled child.” They have defined a perception of “saving vs creating” (20).
of relationship to others, interactions, etc. If the premature infant survives with significant disability, the clinician may perceive that “But for our actions, there would be no disabled child.” They have defined a perception of “saving vs creating” (20).
While detailed plans for conception, antenatal ultrasound, and fetal movement may support parental attachment early in and progressing through gestation, it cannot be denied that these emotions are not as strong in the perinatal period, especially when the infant is extremely preterm, as they are at several months or years of age. In addition, many preterm infants are the result of unplanned, often unwanted, or sometimes unknown pregnancies. Blustein describes the neonate as “not born into the family circle so much as outside it, awaiting inclusion or exclusion. The moral problem the family must confront is whether the child should become part of the family unit” (21). Ross notes that respect for the person is “owed to all individuals on the basis of the individual’s personhood (and developing personhood) … proportionate to the actualized capacities of the individual and his or her potential to attain full personhood” (22). It is therefore problematic that the infant’s moral worth is variable, dependent on acceptance by its family rather than on any innate socially or even legally accepted character. This worth may change over a short period of time, and this change may then affect differences in or difficulties with decision making prior to birth versus at a week or month of life. Decisions made in the labor room regarding a child who has never been seen by the parent and who may have an increased risk of mental retardation become much more difficult when the 6-month-old child has confirmed severe developmental delay.
Decision Making
Sound clinical decision making should be based on sound data, a careful and thorough diagnostic assessment, and, based on that diagnostic assessment, accurate prognostic estimates. Sometimes, this is relatively easily accomplished: confirmed trisomy 13 has a well-defined natural history. In other situations, the diagnosis may not be well defined or the prognosis is uncertain. For both the ELBW infant about to be born or the premature infant with grade III intraventricular hemorrhage, there is an increased statistical risk of developmental delay, but it is not certain how this particular infant will progress. Rhoden (23) has defined strategies that have been or might be used when there is uncertainty about prognosis:
Wait until certain: Continue until the patient is actually dying or will survive but with definite severe disability. Some very critically ill infants might survive with aggressive care. There is little attention paid to suffering, burden-benefit ratios, or the number of infants needed to be treated for one additional intact survivor.
Statistical prognosis: Use statistical cutoffs and aggressively treat all those selected. This might be described as the “evidence-based approach.” Selection might be by birth weight or gestational age. This approach may be used when resources are limited. Professional, regional, or national guidelines might exist to define these cutoffs (e.g., resuscitation at 23 to 24 weeks). This approach ignores individual variation and may sacrifice some potentially normal infants who may behave outside of the norm. It relies on data that may or may not accurately reflect the clinical situation at hand. Decision making is psychologically “easier,” because it is allegedly “objective.”
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