Decision-making during pregnancy can be ethically complex. This paper offers a framework for maternal decision-making and clinical counseling that can be used to approach such decisions in a systematic way. Three fundamental questions are addressed: (1) Who should make decisions? (2) How should decisions be made? and (3) What is the role of the clinician? The proposed framework emphasizes the decisional authority of the pregnant woman. It draws ethical support from the concept of a good parent and the requirements of parental obligations. It also describes appropriate counseling methods for clinicians in light of those parental obligations. Finally, the paper addresses how cultural differences may shape the framework’s guidance of maternal decision-making during pregnancy.
Highlights
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Decision-making and clinical counseling during pregnancy are ethically complex.
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Pregnant women have the authority to make decisions during pregnancy.
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Parental obligations should guide maternal decision-making.
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Clinicians should use parental obligations to guide maternal counseling.
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Cultural differences make maternal decision-making more challenging.
Introduction
Pregnant women today face an array of decisions during pregnancy. Better understanding of embryonic and fetal development has offered insight into the effects of choices about nutrition, medications, and other substance use. Genomic and genetic innovation and improved imaging allow prenatal diagnosis that can be used to inform decisions about pregnancy termination or appropriate intervention. Fetal therapy is now an option for a variety of conditions that previously entailed certain morbidity and mortality. Finally, fetal monitoring and new surgical delivery options are changing the way pregnant women prepare for birth. This list excludes related questions about how and when to conceive and any medical intervention that might be appropriate after a baby is born.
New knowledge and technology hold great potential to improve the well-being of both women and fetuses and create new options that can raise challenging questions about whether, when, and how to employ such knowledge and technology. Therefore, pregnant women and their health care providers face an expanding set of decisions as a routine part of prenatal care when pregnancy progresses normally and an even more complex array of options when concerns arise. In this review, questions of who should make decisions during pregnancy and how those decisions should be made are explored. The role that a clinician should play in these decisions and ethical justifications for various counseling approaches are described. Finally, strategies for negotiating cultural differences are presented.
It is worth clarifying from the outset that the vast majority of these decisions are not governed by legislation in most countries (with some notable exceptions such as elective pregnancy termination). In contrast, many of the world’s religions do offer direct or indirect guidance about what a woman should or should not do during pregnancy. Religious beliefs and perspectives are therefore likely to have a considerable impact on the decision-making processes of some pregnant women. Although law and religion may inform or influence these decisions, the focus of this review is not on legal or religious considerations but on the ethical aspects of decision-making during pregnancy.
A Case to Consider
Mrs. S is 31 years old and 20 weeks into her first pregnancy. During the routine anatomy scan performed at 19 weeks, a thoracic myelomeningocele was found. Mrs. S was referred to a nearby fetal therapy center for further evaluation where MRI confirmed the ultrasound finding and revealed a Chiari II malformation of the brain. No other congenital anomalies were identified, and the baby’s karyotype was normal. Dr. Y explained the condition to Mr. and Mrs. S and described two different treatment approaches: fetal surgery or postnatal repair. Although postnatal repair is the standard of care, limited available research has shown improved outcomes for children undergoing in utero surgical repair. Fetal surgery, however, involves risk to the fetus and to the pregnant woman associated with both the surgery itself and future pregnancies.
Mrs. S has decided that she wants to undergo the surgery to minimize the effects of the neural tube defect for her child. Mr. S, however, is strongly opposed. He does not believe that the available evidence of benefit to the child is sufficient to justify the risks to Mrs. S and the future children they hope to have. Dr. Y wonders how to proceed further.
Dr. Y’s initial efforts should focus on answering questions and correcting any misunderstanding Mr. and Mrs. S may have. Once this has been accomplished, a number of ethical questions arise: Is the informed permission of both parents required for decisions that impact a fetus? Who is entitled to make this choice? What ethical considerations should guide the decision-making process? What is the appropriate role of the physician in that process?
A Case to Consider
Mrs. S is 31 years old and 20 weeks into her first pregnancy. During the routine anatomy scan performed at 19 weeks, a thoracic myelomeningocele was found. Mrs. S was referred to a nearby fetal therapy center for further evaluation where MRI confirmed the ultrasound finding and revealed a Chiari II malformation of the brain. No other congenital anomalies were identified, and the baby’s karyotype was normal. Dr. Y explained the condition to Mr. and Mrs. S and described two different treatment approaches: fetal surgery or postnatal repair. Although postnatal repair is the standard of care, limited available research has shown improved outcomes for children undergoing in utero surgical repair. Fetal surgery, however, involves risk to the fetus and to the pregnant woman associated with both the surgery itself and future pregnancies.
Mrs. S has decided that she wants to undergo the surgery to minimize the effects of the neural tube defect for her child. Mr. S, however, is strongly opposed. He does not believe that the available evidence of benefit to the child is sufficient to justify the risks to Mrs. S and the future children they hope to have. Dr. Y wonders how to proceed further.
Dr. Y’s initial efforts should focus on answering questions and correcting any misunderstanding Mr. and Mrs. S may have. Once this has been accomplished, a number of ethical questions arise: Is the informed permission of both parents required for decisions that impact a fetus? Who is entitled to make this choice? What ethical considerations should guide the decision-making process? What is the appropriate role of the physician in that process?
Who should make decisions?
In Western society, we have a well-established ethical consensus that treatment decisions during pregnancy are left solely to the pregnant woman. A woman’s right to determine what happens to her own body has such great moral weight that it overwhelms all other ethical considerations that might come into play. This position is built upon the bedrock of medical ethics: the requirement to obtain the informed consent of a patient undergoing medical intervention . It is buttressed by considerations of justice, gaining support from the view that pregnant women are entitled to the same rights that other women are entitled to, including the right to make decisions affecting their bodily integrity . Conflicting ethical norms including the interests of an intimate partner, the well-being of the fetus, and even the well-being of the pregnant woman are insufficient to upend the priority of maternal autonomy.
Professional organizations have explicitly embraced this view in statements regarding fetal intervention and other types of decisions during pregnancy. The American College of Obstetricians and Gynecologists states, “although it may be appropriate and helpful for the father to be involved in these decisions…to assign him any authority to assent or dissent would unjustifiably erode the autonomous decision-making capacity of the pregnant woman” . This position leaves little ambiguity about the question of whose wishes should Dr. Y follow and whether the informed permission of Mr. S is necessary to perform fetal surgery in this case.
Perhaps because of the widespread agreement about a pregnant woman’s decision-making authority, only minimal consideration has been given to the role of the intimate partner in such scenarios. Guidance about incorporating the beliefs and preferences of the father of a fetus is nearly nonexistent. Limited commentary on involving the partner in decision-making about fetal surgery focuses on the threats that it poses to the pregnant woman’s autonomy . The few papers that have taken the father’s perspective seriously concern the most extreme maternal decision: the elective abortion of a fetus. Hardwig has eloquently argued that the father’s perspective ought to be taken into account by the pregnant woman and that in some cases, she may be obligated to terminate a pregnancy that she wants to carry to term on the basis of his desire to avoid fatherhood. It is worth noting that Harris is making an ethical claim as opposed to a legal one, explicitly stating that he would not support the legal enforcement of this approach . Therefore, there is much work to be done to better understand the optimal role for men like Mr. S in decision-making during pregnancy.
It is worth noting that this analysis does not rely on the particular medical details of the case described above. The ethical analysis would be similar in any case involving a pregnant woman with a dissenting partner. For example, the same conclusion might be drawn about a case in which the woman chooses to smoke, agrees to recommended chemotherapy, decides to discontinue antidepressants, or refuses cesarean section. The nature and extent of harms and benefits to both her and the fetus do not affect the answer to the question of who is the ethically appropriate decision-maker in situations involving a capacitated pregnant woman.
The single exception to the consensus that decision-making during pregnancy is the sole prerogative of the pregnant woman arises in the context of research. The Common Rule (45 CFR 46) , which governs research at institutions that accept federal funding, requires institutional review boards to only approve research protocols in which the consent of the father of the fetus is required for the pregnant woman and fetus to participate in any research protocol intended only for fetal benefit (45 CFR 46.204). The American College of Obstetricians and Gynecologists, however, has criticized this regulation, stating that requiring an intimate partner’s consent is not ethically justified .
How should decisions be made?
Having clarity about who is the appropriate decision-maker does not offer much insight into how decisions should be made during pregnancy. What ethical considerations should Mrs. S take into account when she is choosing a treatment approach? What ethical constructs should she use to shape and guide her deliberations?
Two Flawed Approaches
In light of the conclusions of the previous section, it might be tempting to assume that a pregnant woman’s interests should routinely be given first priority when making decisions during pregnancy. The singular focus on a pregnant woman’s decisional rights and arguments about the importance of equal treatment of pregnant women might make this type of hierarchical model seem plausible. Such an approach would first maximize benefits and minimize burdens to the pregnant woman and only take the well-being of the fetus into account as a secondary consideration. An intervention such as fetal surgery to correct a neural tube defect would only be permissible if the risks and burdens for the pregnant woman were minimal.
However, this woman-centered approach would be problematic for at least two reasons. First, although it is true that the fetus does not have the ability or the legal right to participate in decision-making during pregnancy, it does have interests that may be dramatically affected by the decision . Routinely marginalizing those interests in favor of maternal well-being would disregard the morally relevant consequences of those choices for a future child. Second, this approach would run counter to the instinct of many (if not most) pregnant women to prioritize the well-being of their fetus and accept significant risk to promote it. As a result, a model that routinely prioritizes the interests of a pregnant woman would be both theoretically and pragmatically inappropriate.
A second existing framework that may offer insight into decision-making during pregnancy can be found in pediatric ethics. If a pregnant woman has indicated that she considers her fetus to be a future child and wants it to be treated as such by the medical team, the fetus gains the status of patient . The Best-Interest Standard has stood for years as the guiding principle for parents (and clinicians) making decisions on behalf of their minor children (and patients) . Such an approach would prioritize the well-being of the future child, permitting and possibly requiring intervention for fetal benefit even when risks and burdens for the pregnant woman are significant. It would imply that Mrs. S is morally obligated to undergo the surgery to promote fetal interests.
The Best Interest Standard has been criticized on a number of different grounds. Scholars have argued that it is vague, overly aspirational, culturally insensitive, and blind to contextual considerations . These are important critiques, but the more central reason for the Best Interest Standard being an inappropriate framework for guiding decision-making during pregnancy is that it is not designed to take into account the consequences of the decisions for the pregnant woman. By definition, a fetus is a living being that exists within another living being. Any plausible moral approach to decision-making during pregnancy must therefore incorporate consideration of that being, making the pediatric Best Interest Standard inadequate for this purpose.
The failure of these two approaches makes it clear that routinely prioritizing either maternal or fetal interests when making decisions during pregnancy would be problematic. Even so, each of these approaches captures something ethically significant, indicating a need for a framework that recognizes both the interests of the pregnant woman and the interests of the fetus, integrating these considerations when interests are not aligned. With regard to the case described above, a defensible ethical approach would seriously consider both the impact on the couple’s future child and the effect on Mrs. S.
An Alternative: Parental Obligations
For many years, challenges of this type were referred to as “maternal-fetal conflicts.” Under this paradigm, pregnant women and clinicians were tasked with finding the ethically appropriate trade-off between maternal and fetal interests. The implication was that this type of situation was a zero-sum game in which the promotion of the well-being of one party necessitates compromising the well-being of the other. More recent work, however, has criticized this description, proposing the reconceptualization of such situations . Rather than assuming a conflict-based approach to these questions, proponents of this alternative view emphasize the interrelatedness of a pregnant woman and her fetus. They point to the difficulty of sensibly separating the well-being of a pregnant woman and her fetus, given fetal dependency on the woman and many women’s desire to do what is best for their future children.
Specific description of how this revised paradigm should inform and guide maternal decision-making has been limited. One approach that has been proposed is grounded in the relationship between the pregnant woman and the fetus—that of a parent and (future) child . This approach uses as its guiding question, “What would a good parent do?” It takes seriously the interrelatedness of the interests of the pregnant woman and fetus while offering a specific framework for understanding the nature of that connection. Pregnant women planning to have a child take on the responsibilities associated with becoming a parent and therefore should seek to make decisions during pregnancy that are consistent with those required by parental obligations. It is worth emphasizing that this relationship is only established in cases in which the pregnant woman decides to carry a fetus to term and so does not preclude termination of pregnancy as an ethically acceptable option.
This approach, of course, relies heavily on the concept of parental obligations, which have not been clearly and uniformly defined. A plausible definition would require a parent to protect the interests of her child to a minimal degree and promote the interests of that child when it is feasible for her to do so at reasonable cost . It establishes a baseline of well-being below which parents should not allow their children to fall (if possible) and a method for integrating the interests of parents and children when above that baseline. Therefore, parental obligations require that parents place importance on the well-being of their children. They also incorporate the expectation that a good parent will, under some circumstances and to some degree, sacrifice her own interests to promote the interests of her child.
This expectation, however, has limits. When the burdens or costs of promoting a child’s interests become unreasonable in relation to the benefit expected for the child, the parent is not ethically obligated to take those actions. Understanding what constitutes “reasonable cost” is clearly key to the application of this framework: parents may disagree about what costs or burdens would be reasonable to bear to bring about some particular benefit. Even so, this framework offers some specific guidance for maternal decision-making. When applied to the case of Mrs. S, the lens of parental obligations offers insight into how she should make the decision about whether to pursue fetal surgery to correct her fetus’s neural tube defect in utero .
Would the intervention under consideration protect the interests of the child to a minimally acceptable degree? If so, there would be a strong argument for doing so under the paradigm of parental obligations. In this case, however, fetal surgery is an innovative procedure, with only limited evidence about its effectiveness. Because the extent of potential benefit has not been clearly established, it is not known whether the intervention will make a difference to ensure that the child’s interests are protected to the requisite minimal degree. Further, the likelihood of benefit of any amount is empirically uncertain. In other words, it is not known whether or how likely it is that the intervention will make it possible for Mrs. S’s future child to avoid significant physical and mental impairments that would cause him or her to fall below a minimally acceptable level of well-being. It therefore seems that this parental obligation would not require Mrs. S to decide to undergo fetal intervention in this case.
What about the second part of the parental obligation: to promote a child’s interests when one can do so at reasonable cost? Some of the same considerations are relevant in the analysis of this question. Because of the intervention’s limited evidence and uncertainty about the degree of benefit, its costs or burdens would have to be relatively low to be judged as reasonable. However, as described in the case, the risks of the surgical approach used are significant for the pregnant woman, the fetus, and future pregnancies. As a result, it would be difficult to find sufficient ethical support the position that a pregnant woman has a parental obligation to undergo surgery in this case.
Morally Relevant Variables
This conclusion, however, may not apply to all cases of fetal surgery for myelomeningocele. The analysis of this decision would change depending on the facts of the particular case at hand. A number of variables are relevant, including the severity of the condition, the likelihood and extent of possible benefit, the evidence available, and the level of risk involved.
Consider a similar case in which the lesion is a sacral meningocele rather than the more severe lesion described above. The child’s prognosis would be significantly better in such a case, above the minimal threshold of well-being a parent is required to protect (assuming no other congenital problems have been identified). The surgery would then be an opportunity to promote the child’s interests beyond this minimal level. Mrs. S would only have a parental obligation to choose the surgery if the cost or burden to her would be reasonable.
Another variation of the case would be one in which the expected benefit associated with the surgery has been empirically demonstrated to be high. The greater the anticipated benefit and the more likely that benefit is to come about, the stronger the argument for a parental obligation to choose that option. Similarly, the level of evidence available is an important variable to take into account: when potential benefits of intervention are highly speculative, the ethical justification for choosing that intervention is less robust. As a result, a parent can only be ethically obligated to choose intervention if (1) there is solid evidence that the benefit of that intervention is likely to be sufficiently great that the well-being of the fetus will be protected to the requisite minimal degree or (2) the burdens or costs of the intervention are reasonable in relation to the anticipated benefits, adjusted for likelihood and level of evidence. If the benefits of surgery have been shown to be likely and significant, Mrs. S may have a parental obligation to accept some cost or burden to herself to protect her future child’s interests to a minimal degree or to promote those interests.
A third ethically relevant variable that might change the analysis of this case is the extent of the costs or burdens to the pregnant woman. As the case was described, fetal surgery involves significant risk to both the pregnant woman and future fetuses. However, less invasive techniques for fetal surgery are under development, and at some point, the risks associated with this intervention could become minimal. If the risks are small, interventions with minor anticipated benefits may be required by parental obligations. In other words, Mrs. S may have an ethical obligation to choose to undergo a surgery that is expected to have moderate benefits for the fetus if the costs and burdens of undergoing surgery are minimal for Mrs. S.
To summarize, the severity of the underlying condition; the likelihood, degree, and evidence base of the anticipated benefits; and the extent of the costs and burdens involved all must be considered when evaluating whether a pregnant woman has a parental obligation to make a particular choice. If the proposed fetal surgery is known to have high expected benefits for a fetus such that it protects the future child’s interests to a minimally acceptable degree or promotes it at minimal risk to the pregnant woman, there is strong justification to support the claim that Mrs. S is ethically obligated to choose that approach. In circumstances where the facts are different, different conclusions are likely to be drawn. Systematic consideration of these morally significant variables can offer guidance about the existence of a parental obligation in any particular case and therefore constitute a framework with which pregnant women can make difficult choices.