Emerging therapies today offer the promise of treatment for "fetal patients." Because of this focus, fetal interests have increasingly been considered separately from maternal interests by clinicians, policy makers, and the bioethics community. Nonetheless, pregnancy creates a unique circumstance in medical ethics because the fetus can be accessed only through intervention on the pregnant woman. Although maternal and fetal interests usually are aligned, care of the fetus is intertwined with and dependent on care of the pregnant woman, and at times conflict can arise between fetal and maternal interests. This circumstance is termed "obstetric" or "maternal-fetal" conflict. These are emotionally laden issues that involve protecting the rights of women and the best interests of the fetus. This review will outline some ethical constructs that may be used to help resolve such conflicts.When conflict arises between maternal and fetal interests (eg, refusing a cesarean delivery for fetal distress, or treatment of cancer during pregnancy that could result in fetal death), more than one ethical theory may be useful to aid decision-making. (1) Principle-based theories use the principles of respect for patient autonomy, beneficence/nonmaleficence, and justice to guide conflict resolution. (2) Other helpful approaches to obstetric conflict, in particular, include feminist theory and the ethics of care. (1)(3) Because of the emotionally laden issues involved in protecting both the rights of women and the best interests of the fetus, conflicts often are approached best by using a comprehensive analysis that incorporates a variety of perspectives. Pediatricians and pediatric subspecialists who care for the child after delivery can play an important role in helping provide perspective about potential fetal outcomes.Feminist theory evaluates ethical issues from a gender-based perspective. In particular, feminist ethics point to distinctions in how women are treated in comparison with men, rather than use a neutral perspective in decision-making. (1)(3) For example, some hospital policies and state laws exclude pregnant women from participating in health care decisions, such as advanced directives refusing treatment. (4) This viewpoint implies a lack of competency of pregnant women to participate in health care decisions and contributes to a distorted view of women as decision makers. Feminist ethics calls attention to such inequities and exclusions and asks whether a moral wrong is perpetrated by such gender-biased policies. Feminist theory can be considered in relation to this question: "If the patient were not pregnant and was refusing treatment, would her wishes be respected?" Another example would be to ask, "Is there a comparable situation in which one would consider forcing a father to undergo treatment to benefit his child?"The ethics of care evaluates the moral dimension of relationships with others. (1) Many pregnant women have other children and family obligations that inform their decision-making. Care-based ethics asks, "What is the patient's relationship to the fetus? To her physicians? To her social unit?"The use of feminist theory and the ethics of care can reframe issues of obstetric conflict in terms of the patient's values and life experiences to understand and support her decision or devise additional treatment strategies.Consider a pregnant woman who presents in labor at term, bearing a large fetus at risk for dystocia. She is told that a cesarean delivery is the best route of delivery for the fetus' well being. She declines the operation and requests a natural childbirth. The fetus begins to have heart rate abnormalities, suggesting a nonreassuring status. The pregnant woman continues to decline the recommended cesarean delivery.Over the past decade, the increasing use of technology to visualize and test the fetus during pregnancy has led us to consider the fetus as a patient separate from the pregnant woman. (4)(5) This philosophy contrasts with earlier views of pregnancy not being a medical condition but an extension of nature, thus leading to the view of the fetus as having separate interests to be addressed by the medical team. Language around obstetrical decision-making reinforces the separate consideration of the fetus from the pregnant woman (such as "fetal distress" or "fetal interests"). Nonetheless, access to the fetus for treatment must occur through the pregnant woman's body.Consider other situations in which medical intervention to benefit one patient (eg, a child with end-stage renal failure needing a transplant) involves risk to another patient (eg, the organ donor) when the two patients are not "intertwined." Would you consider both individuals to be your "patient" if you were the transplant surgeon? As a pediatrician, would you expect a parent to donate a kidney to a child under such circumstances? Respect for autonomy, feminist ethics, and the ethics of care guides us to acknowledge the competent pregnant woman as the decision maker for issues related to her pregnancy, "bodily integrity," and fetal well being. (1)There are aspects of this situation in which the interests of the mother and the fetus are aligned. In general, a pregnant woman is highly motivated to ensure the health of her fetus, and she desires a good pregnancy outcome for herself and her future child. (3)(4) Maternal psychological well being is important for both fetal and neonatal well being. Optimal maternal health ensures fetal health. Defining areas in which maternal interests and fetal interests are aligned is important for maintaining a therapeutic relationship with the pregnant woman. If the patient has a strong aversion to operative delivery, it may be for good reason. It can be helpful to explore those reasons to understand and honor the patient's perspective.A foundational statement in medical ethics is that "good ethics begins with good facts." In many situations of obstetric conflict, the body of evidence supporting the recommended intervention may not be comprehensive or as conclusive as initially presented. (4) The medical evidence supporting any recommendation for route of delivery often is incomplete. In cases in which courts have intervened to order cesarean delivery, for example, the fetus often has been delivered unharmed by the vaginal route. (4)(5)(6) Cesarean deliveries have increased in the United States without comparable improvements in neonatal outcome.This situation illustrates that, in every case, the evidence for potential harm to the fetus must be carefully and objectively analyzed. When evidence supporting the treatment recommendation is weak, uncertain, or not available, and outcomes vary, there is poor ability to predict individual outcomes. In obstetric conflict about route of delivery, this uncertainty is often the case, and emphasis on the conflict may be disproportionate to what the evidence indicates. Again, respect for patient autonomy guides us to honor her decision to accept or refuse treatment recommendations in virtually all circumstances. (5)In addition, the American College of Obstetrics and Gynecology Committee Opinion on Maternal Decision Making, Ethics, and the Law, recommends, "Pregnant women should not be punished for adverse perinatal outcomes," and "Pregnant women's autonomous decisions should be respected". (5) We should presume these decisions are based on the best medical evidence and facts available to guide her decisions at the time.Thus, when the evidence for treatment benefit is unclear, providers should minimize the polarization and conflict around a refusal of treatment. Although the pregnant woman can decline cesarean delivery, continued conversation with her as labor progresses may lead to changes in her decision. Preserving the physician-patient relationship in a compassionate, professional manner will allow ongoing reevaluation of the decision, depending on whether the fetal status improves or worsens and whether the mother is able to deliver vaginally or not.Fetal interests and medical analysis of the benefits and harms of delivery will vary with gestational age. However, there may be less data and even more uncertainty regarding outcome at extremely early gestations, and this reality should be acknowledged.Legal intervention to resolve obstetric conflict generally should be avoided. (4)(5)(6) Although individual judges in emergency circumstances have ordered cesarean delivery, such decisions have largely been overturned, on review, found to be lacking in due process for the pregnant woman, and exaggerating the medical benefit of intervention. Other consequences of forced intervention or coercion should be taken into account, in particular, regarding the trust relationship necessary between physician and patient. Pregnant women should not be threatened or legally coerced to accept treatment recommendations. (5) Specifically, there is consensus in the bioethics community that pregnant women with decisional capacity have the right to make an informed refusal of cesarean delivery. (4)(5) According to the American College of Obstetrics and Gynecology Committee Opinion on Maternal Decision Making, Ethics, and the Law, "In the absence of extraordinary circumstances, circumstances that in fact, the Committee on Ethics cannot currently imagine, judicial authority should not be used to implement treatment regimens aimed at protecting the fetus, for such actions violate the pregnant woman's autonomy". (5)There are countless other circumstances in which conflicts may arise between maternal and fetal well being during pregnancy. For example, a variety of malignancies can occur in pregnant women and result in significant morbidity and mortality to the woman or her fetus. (7) Decisions around treatment must be individualized based on the best available medical information regarding prognosis, the stage in pregnancy, and the pregnant woman's life circumstances and values. Although the context of their decisions will vary, pregnant women should have the same rights to refuse treatment as nonpregnant women. (4)(5)(6)It is interesting to note how societal values and perspectives may be more sympathetic to a woman's decision to refuse cancer treatment to benefit the fetus, even if such a decision could harm her survival or health. Such decisions are viewed as "altruistic," whereas decisions to pursue treatment that may preserve her life but result in pregnancy loss may be viewed as "selfish." Physicians and other members of the health care team should avoid assigning value judgments that reflect those of the providers rather than the patients.For particularly difficult cases, informal or formal ethics consultation may be helpful to address the ethical issues involved. Incorporating a variety of perspectives, including those of pediatric and obstetrical care providers, and other stakeholders, as well, may help develop treatment options and support an ethical decision-making process.Ultimately, moral theory compels physicians to accept a pregnant woman's informed consent or refusal of treatment, according respect to her autonomy and bodily integrity, and her values regarding pregnancy outcome as well. In cases where her decision may harm her fetus, coercion to force treatment is never justified. In extraordinary cases, legal intervention has been attempted. Use of the courts to enforce treatment compliance by pregnant women has frequently been unsuccessful, or has activated processes that are hasty and incomplete, and such court rulings frequently are overturned on appeal. (4)(5)(6)Evidence shows that continuing a trusting, compassionate, professional relationship with the pregnant woman generally results in greater success in improving maternal and child health. Feminist ethics perspectives can help detect subtle, gender-based biases in the clinicians' approaches to conflict resolution and support collaborative decision-making by the pregnant woman and her health care team. Pediatricians can provide valuable perspectives about potential fetal outcomes, and should be involved in counseling the pregnant woman. The goal is to provide an ethical framework to optimize health outcomes for both the pregnant woman and her fetus.
The interests of the fetus generally are aligned with those of the pregnant woman. When they are not, the fetal best interests should be discussed, but respect for the autonomy of the pregnant woman and her bodily integrity should prevail. Gender bias and discrimination toward women should be avoided, and the circumstance of pregnancy should not be used as a reason to infringe upon or limit a competent woman’s rights. Evidence indicates that providing prenatal care and treatment in a supportive, rather than coercive way is the most effective way to promote both maternal and child health. Concerns about potential harm to the fetus related to maternal decisions must be evaluated in the context of the best medical evidence, including what is known and what is uncertain. Threats or legal coercion should not be used to force treatment, in particular, to impose cesarean delivery. Hospital guidelines can be developed to support a framework of shared decision-making in the situation of maternal-fetal conflict and provide guidance for compassionate conflict resolution. Pediatricians have an important role in informing the discussion about care and outcomes. At times, an ethics consult maybe helpful to mediate conflict resolution. Intervention by the courts is rarely appropriate or indicated and should be avoided.
A reported association between congenital central hypoventilation, long-segment intestinal aganglionosis (Hirschsprung disease), and autonomic dysfunction, with a high recurrence risk and mortality rate, is associated with abnormal neural crest development (neurocristopathy).A fetus had increasing polyhydramnios, no stomach bubble, and repeatedly nonreactive fetal heart rate tracings despite normal activity. There were no other fetal anomalies on ultrasound. Postnatally all of the above clinical features were diagnosed, prompting diagnosis of neurocristopathy syndrome. She died at 2 weeks of age.Antenatal polyhydramnios, nonreactive nonstress tests, and absent stomach bubble in an active fetus indicated neurocristopathy.
