Ethical Issues in Maternal-Fetal Medicine


Key Points

  • A fetus can be treated but is not a patient in the normative sense of the term.

  • Because a fetus can only be treated via the body of a pregnant woman, fetal treatment always makes her a patient and requires her informed consent.

  • Regardless of whether a fetus has a high or low moral status, the interests of the future child are relevant for decision making about fetal treatment.

  • Without clear benefits compared with nontreatment or postnatal treatment, there can be no justification for fetal treatment.

  • Avoiding therapeutic misconception is an important challenge for the ethical conduct of fetal treatment trials.

  • Fetal treatment should not be presented as a morally preferred alternative to a termination of pregnancy .

Introduction

This chapter discusses ethical issues in maternal-fetal medicine, focusing on questions arising with the development of options for fetal treatment. This is a very broad field ranging from open surgery to pharmacotherapy, from experimental procedures to accepted treatment and from interventions aimed at saving fetuses from in utero or perinatal death to treatments with a rationale of improving long-term health outcomes. Although specific ethical issues arise with each distinct form of fetal treatment, this chapter will inevitably remain on a more general level, referring to treatments for concrete disorders only by way of illustration. What makes fetal treatment challenging from an ethical point of view is that a fetus can only be treated via the body of a pregnant woman. Fetal treatment is therefore always maternal-fetal treatment, which means that the relevant procedures require her informed consent. However, as elsewhere in medicine, consent is not enough to render a treatment offer ethical. Clinicians offering treatment have a professional responsibility not to expose their patients to disproportionally high risks. What this means is often difficult to determine but even more so in this field in which pregnant women are offered potentially risky treatment to benefit not themselves (at least not directly) but the fetus or the child that the fetus may grow into.

In this chapter, we will first discuss the fundamental issue whether or not in addition to the pregnant woman in the care of a medical doctor, the fetus (or fetuses) she is carrying should be regarded as a patient (or patients). Next, we will address the different ethical challenges arising with the two distinct aims of fetal treatment for lethal and nonlethal conditions: saving the life of the fetus (or the neonate) versus improving the quality of life of the future child. Finally, we will explore the implications for prenatal decision making of the availability of experimental and established fetal treatment options.

Two further preliminary remarks need to be made. First, although interventions in a fetus always also involve treatment of a pregnant woman and although we are aware that language is important, we will for convenience sake use the term ‘fetal treatment’ in this chapter. Second, when discussing the challenges of counselling and decision making about fetal treatment, we do as if this only concerns the clinician and the woman. Of course, we are aware that these decisions are often shared by pregnant women with their partners and that these (mostly the biological father-to-be) do have an interest in these choices as well. And clearly, with her authorisation, it is only appropriate for professionals to address and share information with the prospective parents as a couple. However, precisely because the fetus can only be approached through the body of the pregnant woman and because any treatment decisions will make her a patient, it is only on the basis of her voluntary and autonomous consent (or dissent) that such decisions should be taken.

The Fetus as a Patient?

The term ‘patient’ as used to designate the fetus need not imply more than that, as a matter of fact, health problems in a fetus can increasingly be treated. But ‘patient’ is also a social role-related concept with normative implications. Being a patient means being in a relationship with a doctor that entails a claim to medical consideration. Whether the fetus should be regarded as a patient in this sense is far from obvious. What should be avoided is that mixing up these two uses of the term suggests that because fetuses can be referred to as patients in the former sense, they are also patients in the latter, thus preempting questions about responsibilities and obligations that clinicians may have toward the fetus and about how these relate to those owed to the pregnant woman. From the mere fact that fetuses can be treated, nothing as yet follows about whether they should and if so, on what conditions.

The Debate About Moral Status

On what basis can we establish whether professionals (especially obstetricians and maternal-fetal medicine specialists) do have responsibilities and obligations toward a fetus independently of what they owe to the pregnant woman? It would seem that this requires a prior answer as to what the fetus is, in moral terms. This leads, however, into a conundrum of ethical debate. What meaning should be given to both the continuity (fetuses are beginning forms of human life) and the discontinuity (they still lack most of the defining characteristics of human beings)?

Very different answers to this question have been given. For instance, according to the Roman Catholic Church, the continuity is the morally decisive factor: being destined to become fully developed human beings (or persons) is what gives human embryos and fetuses the same high moral status as should be accorded to all human beings. As ‘potential persons’ (in this strong sense of the term), they deserve full protection as from conception. Although basically following the same reasoning, Judaism and Islam differ from Roman Catholic teachings in taking the moment of ‘ensoulment’ (following Aristotle, this is often set at 40 days for male fetuses) as the starting point of a human life with full moral status.

By contrast, secular philosophers and ethicists have tended to stress the discontinuity. What makes human beings especially worthy of respect and protection is that we are persons in the sense of beings with capacities for the ‘complex forms of consciousness’ that allow us to be ‘self-interpreting animals’. Clearly, this does not hold for embryos or fetuses. Although late-gestation (sentient) fetuses may well have interests, for instance, in being protected from pain and perhaps even a (weak) interest in continued existence, they are not persons and therefore do not commend the same level of respect and protection. Still, according to many authors, the capacity to develop into a human person is morally relevant and gives embryos and fetuses a certain moral standing, although lower than that of persons. This is often thought of as increasing with fetal development, referring to the development of the necessary conditions for later personhood (e.g., brain development capable of sustaining consciousness).

A challenge for this reasoning is to explain why birth should make such a difference. Clearly, looking at how personhood is defined, not only fetuses but also infants seem to fall short. Still, they are mostly regarded as sharing the full moral status of persons. And indeed, even prematurely born infants are regarded as such, whereas (on the present reasoning) more fully developed near-term fetuses are not. Building on the work of Joel Feinberg and others, Carson Strong argues that infants have a ‘conferred’ moral status, ascribed for social reasons to ‘near persons’ on the basis of similarity to the paradigm. This, he says, would apply to infants and to a lesser degree also to late-gestation fetuses: ‘We might say that advanced fetuses have a conferred right to life, but one that is not as strong as that of infants’. However, others have defended biting the bullet that both fetuses and infants fall below the threshold of respect for persons.

Because this is a longstanding and ongoing debate between positions that depend on diverse and often irreconcilable (religious and secular) worldviews, it seems unlikely that consensus can ever be reached about what, if anything, is owed to a fetus at what precise stage of its development. What does that mean for the normative framework for maternal-fetal medicine? As a way out, ethicist Laurence McCullough and obstetrician Frank Chervenak have suggested that we can simply bypass this whole intractable debate and still regard a fetus a patient also in a normative sense of that term. Because they have built an influential theory on the idea that clinicians in this field have responsibilities to both their pregnant and fetal patients, we will discuss their view in more detail.

The McCullough and Chervenak Model

According to McCullough and Chervenak, a fetus need not have a prior moral status to be regarded as a patient, but conversely: if a fetus can benefit from medical treatment, it is a patient and as a patient it has a ‘dependent moral status’, dependent, that is, upon the social role of being a patient. The crucial step is that the fetus is presented for medical care that can reasonably be expected to benefit from it. This notion of fetal benefit, as McCullough and Chervenak explain, requires the existence of ‘links’ connecting the fetus to the person with independent moral status it may later become. The reasoning here is that ‘achieving independent moral status is among the goods that humans value. . . . As a consequence, the fetus reliably linked to later achieving independent moral status has present interests in the . . . necessary and . . . sufficient conditions for later achieving [that] status’. Viability, they say, is one such link, given that from this stage onwards, the fetus can survive into the neonatal period with adequate technological support. With regard to previable fetuses, the existence of the required link would depend on whether the pregnant woman intends to carry the pregnancy to term and makes the fetus a patient by presenting it into the care of a professional.

McCullough and Chervenak use the term ‘beneficence-based’ obligations to distinguish what obstetricians owe to their fetal patients from the ‘autonomy-based’ obligations that can only be owed to (competent) persons. Obstetricians, they say, have autonomy-based as well as beneficence-based obligations to pregnant women in their care, but with regard to fetuses, their obligations are beneficence based only, as is the case with regard to neonates or young children. Because a fetus can only be treated through the woman’s body, her consent will, of course, be needed. Although the authors acknowledge that the pregnant woman may have legitimate interests ‘not to be obligated to take unreasonable health risks’ to allow the fetus to be treated and that clinicians have autonomy-based obligations to respect the woman’s choices in this regard, the qualifier ‘unreasonable’ indicates that there may be cases in which the balance is such that pregnant women can be morally expected to accept reasonable burdens and risks.

The reasoning behind this claim is that whereas with regard to a previable fetus it is entirely up to the woman to autonomously decide whether or not the fetus should be presented for medical treatment, her freedom to make the same decision with regard to a viable fetus is limited by the fact that a viable fetus with the capacity to later become a person has an independent interest in the fulfilment of the conditions for this achievement. According to McCullough and Chervenak, this would create a moral obligation for the pregnant woman to present the fetus for medical treatment and for the clinician to propose and provide such treatment whenever there is an intervention that would clearly promote and protect the interests of the fetus without disproportionately putting the woman at risk. In such cases, clinicians should not simply take an informed refusal as the end of the story but may need to move from information to negotiation and ‘respectful persuasion’, if necessary involving the aid of an ethics committee, to try to convince the woman that she has a moral obligation to allow the fetal patient to be treated.

The Fetus as a Patient: Where Does That Leave the Pregnant Woman?

A recurrent theme in the (feminist) critique of the fetal patient terminology is that it conceptually separates the fetus from the woman in a way that is not only at odds with the reality of pregnancy but also threatens the position of the pregnant woman as a patient in her own right. In a commentary on an early legal case in which criminal charges were filed against a woman who, after having neglected medical advice, gave birth to a severely brain-damaged child, George Annas has minted the ‘fetal container’ metaphor to powerfully illustrate this concern: ‘Favouring the fetus radically devalues the pregnant woman and treats her like an inert incubator, or a culture medium for the fetus’. In a classical sociological study of the early history of fetal surgery, Monica Casper observes that this is not far apart from the language actually used by some of the pioneering surgeons. In this field, she says, ‘the interests of the fetal patient are regarded as paramount and pregnant women are conceptualised either as inert tools for enhancing fetal access or, conversely, as barriers restricting fetal access. Pregnant women’s autonomy in such a framing may be severely diminished’.

Of course, there is nothing in the notion of the fetus as a patient that would necessitate this problematic framing in which the pregnant woman either eclipses behind the fetus or is expected to assume the role of a self-sacrificing ‘heroic mom’. However, putting a second patient next to her inevitably leads to the question whose interests are to be regarded as overriding in cases of conflict. A radical stance is taken by Elselijn Kingma, who argues that because no firm physical boundaries can be drawn between the pregnant woman and the fetus, the fetus should be understood ‘as part of the pregnant organism’. As she says, there is ‘one organism throughout the pregnancy and only at birth does this organism split and becomes two organisms’. In this view, anything that affects the fetus, be it the woman’s behaviour or medical treatment, affects the ‘pregnant organism’ as a whole. Accordingly, it would be impossible to say that clinicians have distinct obligations towards the pregnant woman and her fetus.

In an insightful earlier discussion, Susan Mattingly has made clear that the alternate view argued for by Kingma is in fact the understanding that was dominant in obstetrics in the era preceding the advent of high-resolution ultrasonography: ‘Unable to interact with the fetus in clear distinction from its host, physicians conceptualised the maternal-fetal dyad as one complex patient, the gravid female, of which the fetus was an integral part’. Mattingly does not suggest that also in the present era of the transparent womb, this traditional one-patient understanding should still guide our ethical thinking. However, she points out that ‘Ironically, when the fetus is construed as a second independent patient, physicians’ prerogatives to act as fetal advocates are actually diminished’. This is because ethics codes relevant to the doctor–patient relationship consistently rule out counselling patients to accept treatment against their will to benefit another patient. Think of living tissue donation as a context to illustrate this claim.

Others have similarly argued that a ‘two-patient view’ seems difficult to reconcile with what patienthood as a normative concept entails in terms of professional duties, as in cases of conflict, it may be impossible for the clinician to fulfil his or her obligations (including nonabandonment) to both patients. Anne Drapkin Lyerly and colleagues use the example of tragic cases in which a continued pregnancy would entail a significant threat to maternal life, to bring out what they call the inevitable ‘normative asymmetry’ between the fetus and the pregnant woman. If the fetus were a patient in the same sense as the woman (normative symmetry), it would not be obvious what clinicians in such cases should recommend. Here again, the concern of these authors is that with the fetus understood as a second patient, doctors may feel justified to pressure women to allow them to treat that patient through their body.

McCullough and Chervenak may respond – as they have done – that precisely because the fetal patient is not separate from the pregnant patient, normative symmetry between two independent patients is not implied in their framework. They do not say that the interests of the fetus should be of equal weight as those of the pregnant woman or that her reasons for rejecting a proposed treatment should not count. However, the point remains that in their view, the clinician’s understanding of the relative force of his or her obligations to both patients determines what the outcome of a possible conflict should be.

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