ETHICAL ISSUES IN MANAGING FETAL AND NEONATAL CARDIAC LESIONS

STEVEN R. LEUTHNER, MD, MA

Introduction

Technical advances in the field of fetal and neonatal (“fetal/neonatal”) cardiology provide an excellent opportunity to explore, in depth, the ethical issues inherent to fetal/neonatal management. The ethical issues surrounding cardiology are not necessarily different from other areas of fetal/neonatal management, but are arguably important to address because of the growing frequency with which these ethical issues arise in this context: cardiac defects are present in 1% of births and are the leading organ system with abnormalities noted in prenatal care, comprising up to 25% of cases in some fetal care centers.¹ In fact, fetal cardiac imaging has become so common in the past 30 years that institutions such as the American College of Obstetrics and Gynecology (ACOG), the American College of Radiology, and the American Institute of Ultrasound in Medicine (AIUM) recommend routine screening for congenital heart disease (CHD) for fetuses undergoing ultrasound study, for any reason, during the second or third trimester of pregnancy.² It is now common for pediatric cardiologists to perform fetal echocardiography not simply for identifying anatomic structural defects, but for assessing physiological parameters of the fetus in many situations.³ While there is excitement and an increase in publications regarding ethical issues in fetal interventions and fetal care centers, the ethical issues in the outwardly mundane world of fetal diagnosis and management are, in fact, very real and present.

As more pediatricians are involved in diagnostic scanning and counseling for the fetal patient, the challenges of ensuring that families understand and comprehend a diagnosis, its prognosis, and explore decision making for the fetus/future child happen with much greater frequency than the challenges of balancing fetal and maternal interests when considering a fetal intervention. As more “fetal care” or “fetal treatment” centers emerge nationally, and more pediatric subspecialists participate in the prenatal care of the fetus and the woman, understanding the importance of the ethical issues that span from the prenatal to the postnatal period becomes essential.⁴ This chapter will explore different medical/specialty professional cultures, the constructs of the “fetus as patient” and surrogate decision making, and how these constructs are useful in managing the more frequently encountered challenges as well as those that lead to interventions, innovations, and experimentation.

Professional Cultures

First, it is important to acknowledge that obstetrical and pediatric trained physicians have professional cultural differences around clinical, legal, and ethical aspects of prenatal care.^4–6 Traditionally, obstetricians or maternal–fetal medicine (MFM) specialists have managed pregnancies complicated by fetal conditions while affiliated with general hospitals or women and infants hospitals. Obstetrical training is uniquely centered on not one, but 2 patients; and yet, obstetricians’ time is largely spent with one adult. This adult is the decision maker for both herself and her fetus. The ethical principles of autonomy and beneficence (doing what is best) are employed for the woman and the fetus. However, beneficence has traditionally been based on meeting the woman’s goals and, thus, leans largely on respect for the woman’s personal autonomy. While obstetricians are experts in maternal health issues, they lack training and expertise in prognostic outcomes and options for medical management of neonatal/pediatric conditions after birth. A study of obstetricians’ opinions on fetal prognosis for an abnormality revealed significant variation in the judgment of quality of life (QOL) and classification of severity of the condition.⁷ So, while it makes sense that obstetricians have the expertise to counsel pregnant women about their own, and often fetal, health, obstetricians likely do this with an emphasis on the woman’s health perspective.

On the other hand, pediatricians are trained to advocate for children and save young lives. The death of a child or the inability to repair an injury or fix a problem is often considered failure and not an experience routinely encountered in a general pediatric practice. The pediatric community experiences an inordinate pressure to provide maximal treatment for every child except when treatment would prolong the process of dying or be considered futile and inhumane.⁸ There are arguably 2 models of ethical decision making for the pediatric patient, that of Best Interest and Constrained Parental Autonomy. In either of these models, a pediatric practitioner might come across a situation in which the parent as decision maker could be overridden. Interestingly, pediatric subspecialists seem to use this same paradigm when thinking of the fetus. Pediatric specialists feel they should participate in prenatal counseling for maternal conditions that may affect a fetus before decisions are made, are less likely to think of termination as an option, want to see the woman before that decision is made, and are more likely to think that courts should be involved.⁵ Pediatric specialists are very “future child” focused, and see the pregnant woman as a mother who is helping or harming/neglecting her child.⁶

Perhaps because these professional cultural approaches are different, it is appropriate that the clinical management of women with pregnancies complicated by congenital fetal conditions has become increasingly multidisciplinary. The ACOG and the American Academy of Pediatrics (AAP) recently collaborated in an attempt to resolve these independent and differing views with the publication of a joint committee opinion on maternal–fetal intervention and fetal care centers.⁹ The publication acknowledges the difficulties that can arise in the care of the pregnant woman and the fetus. Management conflicts are certain to arise, as pediatric providers perceive their primary obligation to the fetus while obstetric providers consider maternal interests first with fetal outcomes a close second. The benefit of a multidisciplinary approach including both cultures is that the pregnant woman can be better informed of the maternal, fetal, and infant outcomes and possible options.

Moral Status of the Fetus

As important as it is to understand how professional training guides us, one’s personal view of the moral status of the fetus is another major influencing factor in how one approaches the maternal–fetal dyad. For some, fetal moral status exists from the moment of conception and is equal to the moral status of the woman. For others, the fetus may have limited moral status. And for others still, the fetus has some moral status that gradually increases with increasing gestational age, perhaps reaching equivalent status to the woman at either viability or perhaps not until birth. One can easily see how differing views would lead to different viewpoints on defining a maternal–fetal conflict. So how does one deal with these personal viewpoints in a professional relationship?

The foundation for what morality ought to be in clinical practice has been the professional obligation to protect and promote the health-related interests of a patient.¹⁰ Perhaps the most well-developed concept of the fetus as patient is that of McCullough and Chervenak.¹¹ They acknowledge that there is no single authority within theological or philosophical schools that leads to agreement on the independent moral status of the fetus. Debate about the moral status of the fetus tends to lead toward high emotional public debate, setting up the “right to life” and “right to control one’s body” arguments against each other. This leads to an ethical and clinical gridlock. Instead, they argue for a “dependent” moral status of the fetus when discussing the fetus as a patient. This argument begins with the assumption that being a patient does not require moral status, but only that one can benefit from the applications of the clinical knowledge and skills of a physician. The 2 conditions are that (1) a human being is presented to a physician and (2) there exists a clinical intervention that is reliably beneficial in that it results in clinical good over clinical harm for the future of this human being.¹¹ The concept of the fetus as a patient then rests on the links between the fetus and the future child it can become. The first link is when the fetus becomes viable, and the second link precedes viability, when the woman autonomously chooses to continue the pregnancy and presents the fetus and herself for medical care. This still leaves open the legal right a woman has to terminate a pregnancy before viability, and might leave some who believe in an independent status for the fetus uncomfortable, but in most clinical situations, it brings everyone to the same place of evaluating the fetus as a patient with some interests. Of ethical concern is the provider who delays diagnostic or prognostic discussions with a pregnant woman until after viability is reached.

A critique of this argument is that trying to qualify terms or concepts such as “patient,” which are typically thought of as independent individuals, still makes one think of the fetus as separate and for some perhaps equal, obscuring the physical and social relationship inherent in pregnancy.¹² These authors agree that, for pregnancies that will be continued, pregnant women and physicians have beneficence-based moral obligations toward the fetus. “Progress in thinking morally about the nature of these obligations will come from exploring partial and overlapping analogies from a wide variety of situations in which clinicians have obligations to multiple objects of concern (eg, parents, siblings) that extend beyond the discrete patient.”¹² Perhaps one of these analogies is the construct of pediatric surrogate decision making.

Pediatric Surrogate Decision Making and Conflicting Interests

With the construct of the fetus as patient, the situation can arise when there might be perceived conflicting interests between the fetus and the pregnant woman. The reason for this conflict is that once the fetus is considered a patient, one begins thinking about the fetus as a future child and starts processing the situation through constructs of pediatric surrogate decision making.

Best Interest

One core ethical principle broadly incorporated in situations of surrogate decision making is the “Best Interest” standard, which is theoretically a beneficence-based decision for the patient whose wishes are unknowable. Because the fetus/future child is immature and vulnerable, an adult has to make decisions on behalf of it. It is considered the right and responsibility of the parents to be the ones to make these best interest decisions.^13,14 At the same time, there are noted limitations in parental authority based on the idea that children need to be protected from unwise parental decisions, such as in cases of abuse or neglect. In pediatric ethics, it is not uncommon that parents and healthcare staff might view a child’s best interests differently, often based on their own model or interpretation of what is best.¹⁵ The arguments often become circular. While the concept of parental autonomy and parental permission suggests the parents, based on their values, are the ones to weigh the benefits and burdens of medical therapy for their child in determining what is best, there are times parental autonomy can be overridden.^13,14,16

While this concept of Best Interest has penetrated our ethical language, there are those who argue it is incoherent, unrealistic, unknowable, or overly individualistic.^17,18 On the one hand, the principle is meant to be objective. One is to ignore or negate all other interests except that of the infant’s self-regarding interest. In doing this, however, one has a tendency to pit the pregnant woman’s interests, or the parental and family interests, against the fetus or infant’s interest as if they are not interrelated. If, on the other hand, one is to incorporate the pregnant woman’s or parental and family interests by allowing their values to define best interest, then it seems subjective. Finally, there are provider interests that must be acknowledged in medical care, such as personal ego, program development, or financial payment.

Others argue that best interest is a pragmatic standard of reasonableness.¹⁹ If we think of best interest as a simple, narrow concept on how to make decisions for any incompetent patient, it becomes too restrictive. Instead, if we understand best interest as a construct, or a system of action-guiding principles, it can be helpful. What best interest asks in all cases is for medical professionals to think. It makes proper contemplation a fundamental aspect of good practice.²⁰ “The Best Interest principle is to serve as a regulative ideal, not as a strict and literal requirement, because parents’ obligations toward their other children as well as their own legitimate self-interests can conflict with doing what maximizes the child’s well-being, and sometimes takes precedence over it.”²¹

Constrained Parental Autonomy

Another construct for pediatric decision making is that of constrained parental autonomy.²² In this construct, the pediatric patient’s interests are not taken in isolation, but within the framework of an intimate family. If the self-regarding interests of a child conflict with the family goals or interests, the parents may compromise the interests of the child, as long as it is not sacrificing the child’s basic needs. Constrained parental autonomy is based on respect for persons. Respect (1) is owed to all individuals on the basis of the individual’s personhood (and developing personhood); (2) is owed proportionate to actualized capacities and potential; and (3) varies depending on the relationship. This construct permits wide parental autonomy and respects the freedom of parents to balance competing claims of family members, provided that each has basic needs met. This rings true in everyday parenting, as limits are set and sacrifices are asked of children and parents every day.

This also seems to have a nice fit as we look at how pregnant women may make decisions for their fetus. Fetal interests have always been intertwined and dependent on the pregnant woman’s health interests. They cannot be separated until the fetus and mother are biologically separated. It would seem that this construct balances nicely the construct of fetus as patient and its critique noted above.^11,12 When the pregnant woman chooses to continue the pregnancy, she is proportionately elevating the interests of the fetus. At the same time, she is maintaining her autonomy as a patient and parent, as she balances competing claims and decisions during the pregnancy on the freedom she has as a person/parent. While there may be some level of constraint on choices as the fetus matures, the pregnant woman still maintains autonomy and freedom to balance potential competing claims.

While these constructs of decision making for the pediatric patient can be useful, and clinically are how professionals and likely pregnant woman are constructing the situation, we must acknowledge that the pregnant woman as an autonomous patient is different from a mother sitting at the bedside of an infant. Fetal diagnoses set off a chain of follow-up events that require the pregnant woman to participate. This ranges from a choice in termination, more visits for ultrasounds, other imaging, genetic testing, potential fetal treatment options, and delivery and postbirth planning decisions. Any recommendations come with some level of burden and risk to the pregnant woman. While it is true that parents of pediatric patients also experience a level of burden in dealing with a sick child, the reality is they do not have to be physically present, nor do decisions impact their health. Medical recommendations for fetal and future neonatal care then must be weighed against the burdens and risks to the pregnant woman and her health. Virtually all bioethicists, even those who perceive the fetus to have significant rights, hold the view that the right of the woman to have her autonomy respected outweighs any fetal right to beneficence. The ACOG and AAP Committee on Bioethics joint statement clearly states that it is the pregnant woman’s autonomy that trumps all other competing interests, including those of the father and fetus.⁹

Uncertainty

When facing uncertainty in clinical situations, the clinician must form a partnership with the patient/parent: explore values to negotiate the meaning of a prognosis, incorporating the objective and subjective components of best interest, and weigh competing interests.^15,23 Sometimes a truly “best” or “right” decision might be unknowable. Instead, when dealing with hard choices, the notion of “satisficing,” that is to satisfy to some extent and suffice, given the constraints on the decision-making process, might be the best we can ethically do.²³ By adopting an approach that accepts the finite limits of what can be known at any given moment, uncertainty is less formidable.

Practical Situations and their Ethical Attributes

With an understanding of these constructs of professional culture, fetus as patient, best interest and Constrained Parental Autonomy, and how to deal with uncertainty, we can explore where the ethical issues may arise and how to better approach fetal and neonatal patients with cardiac abnormalities.

Fetal Diagnosis of a Well-Described Structural Defect

Cardiologists first entered the perinatal arena with the development of skills in diagnosing structural cardiac defects, and this remains the main focus. The British Congenital Cardiac Association fetal working group states that:

In the abnormal fetal heart, a tertiary level service is expected to make a full and accurate diagnosis of structural and functional defects and rhythm disturbances. A tertiary fetal cardiology service should also be able to recognize features on the cardiac scan that suggests there may be an extra-cardiac abnormality, even though the heart structure is normal. An early accurate diagnosis will give parents choice, as well as the opportunity to plan the delivery and postnatal management to try and improve the outcome….The clinician should be able to provide the parents with detailed information about their baby’s heart problem, including an accurate description of the anomaly, information regarding the need for nonsurgical or surgical intervention, the type of surgery available for the condition, the number of procedures likely to be required, the associated mortality and morbidity, and the overall long term outlook for the child. They should also explain all management options, including termination of pregnancy where appropriate.²⁴

This statement very succinctly covers a lot of ground, but is based on some assumptions. The first is that prenatal diagnosis is accurate. Prenatal diagnostic accuracy from a structural perspective is actually very good, but of course is never 100%.^25,26 In many cases, there is a clear structural diagnosis that has a predicted neonatal outcome that is not expected to alter maternal health issues. In this situation, the prenatal counseling regarding the infant’s medical care seems no different than if this was a postnatal diagnosis. A postnatal echo will be performed to confirm the diagnosis, but there is no expectation to change the future child’s neonatal plan and prognosis. So what is the difference between the prenatal and postnatal diagnosis and the potential ethical issues in cases such as these?

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