The Fetus as a Patient

A Contested Concept and its Normative Implications

Dagmar Schmitz, Angus Clarke, Wybo Dondorp, Dagmar Schmitz, Angus Clarke, Wybo Dondorp

• Publisher: Routledge
• Year: 2018
• eBook ISBN: 9781351692779
• Edition: 1
• Topic: Law
• Subtopic: Ethics & Professional Responsibility in Law
• Index: Law

Due to new developments in prenatal testing and therapy the fetus is increasingly visible, examinable and treatable in prenatal care. Accordingly, physicians tend to perceive the fetus as a patient and understand themselves as having certain professional duties towards it. However, it is far from clear what it means to speak of a patient in this connection.

This volume explores the usefulness and limitations of the concept of 'fetal patient' against the background of the recent seminal developments in prenatal or fetal medicine. It does so from an interdisciplinary and international perspective. Featuring internationally recognized experts in the field, the book discusses the normative implications of the concept of 'fetal patient' from a philosophical-theoretical as well as from a legal perspective. This includes its implications for the autonomy of the pregnant woman as well as its consequences for physician-patient-interactions in prenatal medicine.

Part I
Introduction

1 The fetus as a patient: a sustainable approach for clinical interactions in the field of new prenatal medicine?

Dagmar Schmitz, Angus Clarke, and Wybo Dondorp

Pregnant women and physicians have not only a rather short common history but also one fraught with tension. The central category of medicine as a professional practice – the category of disease – triggers and justifies professional actions but does not seem appropriate for the vast majority of pregnancies. The state of pregnancy is not a state of disease, neither in a descriptive nor in an evaluative sense. Nevertheless, being pregnant nowadays for many women means being in need of or receiving health care, being a patient. Sophisticated clinical care pathways equipped with extensive sets of diagnostic tools have been established in order to monitor the progress of pregnancies and identify potential complications as early as possible. In many countries, a doctor (and not a midwife) is the key contact person for women during pregnancy. But not only have pregnant women been transformed into patients: increasingly, physicians are identifying the fetus as also being a patient requiring prenatal care. Fetuses themselves are subjected to diagnosis and to treatment. Their whole genome is analysed; they are anesthetized and operated on. Fetuses might even impress as

prime work objects in medicine; they are challenging bodies that do not challenge clinicians socially. That is, fetuses cannot ask questions about their own illness or prognosis, nor can they disagree with a doctor’s recommendation. (...) Fetal patients may well be considered the ‘best’ patients by medical workers.

(Casper, 1998 p 214)

This volume will explore the normative implications of the concept of the fetal patient against the background of the recent seminal developments in prenatal and fetal medicine. In doing so, it will also draw attention to the clinical care pathways in prenatal medicine which started to evolve less than 200 years ago and now so powerfully shape our perception of pregnancy, childbirth and fetuses.

In this introduction, we will first give a sketch of the background to the issues discussed in the book, and then briefly introduce the separate chapters by linking them to different aspects of the debate about ‘the fetus as a patient’.

Background

Medicalization is usually understood as a social ‘process by which human problems come to be defined and treated as medical problems’ (Sadler et al., 2009). As a social practice, medicalization can have different functions and aims in addition to improving health and wellness, like for instance safeguarding the power and authority of physicians or satisfying a societal demand for technological solutions for certain problems. What happened to pregnancy and childbirth in many respects can be seen as a typical and strong example of a medicalization which has served various, in part critically evaluated, purposes (Johanson et al., 2002). In its aftermath (but not exclusively caused by it), maternal and neonatal mortality rates decreased significantly. Whereas in the mid-seventeenth century approximately 10 per cent of all neonates died during or shortly after birth in England and Wales, this rate sunk to less than three per 1000 live births in 2014 (Office for National Statistics, 2017). In the same period, maternal mortality rates went down from 15 to 0.09 per 1000 births (Smith, 1993 p 1682). Given that many women had multiple pregnancies, the cumulative lifetime chance of a woman dying in childbirth was often between 5 and 10 per cent (Shorter, 1984 p 98 suggests 8 per cent from examining pre-1800 data from Germany, the USA and England). In some rural areas in the eighteenth century, maternal mortality remained as high as 2 per cent per pregnancy (e.g. in Brabant villages, in Belgium/Netherlands) when it was declining rapidly in cities with access to training for midwives and obstetricians (Shorter, 1984 p 99).

The pregnant woman as a patient

The beginning of the medicalization of childbirth dates back to the mid-eighteenth century (Loudon, 1993 p 1051). Until then and for 150 years thereafter, the phenomenon of giving birth belonged largely to the private and female sphere (with the occasional assistance of female midwives). During the course of the following century, however, the percentage of hospital births changed from 5 per cent (in 1900 in Europe and North America) to 95 per cent (in 2000) and, thus, the management of childbirth has moved nearly completely into the public (clinical), and often male, sphere (Baker and McCullough, 2009).

A similar shift took place in pregnancy management. Traditionally, the pregnant woman had been the unchallenged authority with regard to the unborn. She felt the first fetal movements (the quickening) which for centuries served as the first clear evidence of a pregnancy, and she had the power to share this new knowledge or keep it private. During the nineteenth and twentieth centuries and starting with fetal heart auscultation, the medical professions learned to assess the unborn life through various ways.

With the advent of ultrasound technology in obstetric care in the 1960s, the physician could finally visualize the fetus inside the womb. At around the same time, the photographer Lennard Nilsson famously portrayed fetuses in different stages of development outside the womb and, thus, created public images of the unborn life. Subsequently, the battle to save women’s lives largely won, the focus of the obstetrician changed from maternal to perinatal mortality and acknowledged the physician’s ‘custodianship of the baby’s future’, as Ian Donald pointed out in his textbook on Practical Obstetrical Problems (Donald, 1964). We are now not only able to create 3D ultrasound images of the fetus. It is also possible to examine large parts of the fetal genome via cell-free DNA of placental origin in the blood of pregnant women, which raises hopes for a future ‘fetal personalized medicine’ (Bianchi, 2012). Previously unthinkable therapeutic actions like the prenatal therapy of certain chromosomal conditions or intrauterine surgery are coming into reach or are already established in specialized centers. Fetal medicine as a new medical subdiscipline is finally in full bloom and has an influence on many clinical interactions during and even independently of a pregnancy.

Is there a fetus?

Any medical encounter with a female, from menarche to menopause, has to consider the possibility she might be pregnant. The health care professional will need to ask, ‘Might this woman’s symptoms be caused by pregnancy?’ And even if that is clearly not the case, then the possibility of pregnancy still has to become explicit if there is any question of performing an X-ray or prescribing a drug treatment. The fetus has an influence, even when absent!

Society also promotes fetal welfare in advance of any pregnancy, for example through implementing an active immunization programme for schoolchildren against rubella. This virus is generally harmless to children and adults but can cause severe damage to the embryo or fetus if a woman suffers a primary infection while pregnant. A more targeted programme to prevent unhelpful immunization – for the benefit of future Rhesus-positive infants born to Rhesus-negative women – is also provided through giving Rhesus antiserum to Rhesus-negative women after delivery or following miscarriage or an invasive procedure such as chorionic biopsy to minimize their chances of developing an actively unhelpful immunity against a possible future fetus.

A woman hoping to become pregnant will be advised to eat ‘well’ which might mean eating less if she is overweight, and to take supplements to ensure she has adequate folic acid intake, so that any embryo that develops will be protected from disorders of neural tube closure. And if she is on any dietary or pharmacological treatment, she will be advised that this should be optimized to allow for the pregnancy, especially with diet for phenylketonuria, anticonvulsant treatment for epilepsy, warfarin for anticoagulation or insulin treatment for diabetes mellitus, as fetal exposure to maternal hyperphenylalaninaemia, anticonvulsant drugs, warfarin or hyperglycaemia can be teratogenic and/or toxic. For the doctor, almost any medical encounter with a female adolescent or a young woman raises the question of pregnancy, even when the woman knows and declares that this is not possible.

Pregnancy and expectations of maternal behaviour

There is an even stronger societal expectation that a pregnant woman should avoid exposing her fetus to harmful influences. For instance, she should not smoke or consume alcohol, and should not take recreational or addictive drugs; indeed, fetal welfare may for many be a weightier deterrent to the consumption of such substances than the question of legality. These commitments are expected of a mother-to-be for the sake of her fetus as a future child, along with the expectation that she should be on a ‘healthy’ diet.

The importance of maternal nutrition is increasingly recognized as being for the long-term benefit of the future child and then adult, with higher risks of many common western disorders (hypertension, type 2 diabetes, stroke, coronary artery disease, etc.) if the woman is malnourished (through famine) or if the fetus is growth-retarded because of ‘placental insufficiency’, when the woman may be adequately nourished but the benefits are unable to reach the fetus (Lee, 2015). The malnutrition associated with gross inequalities within societies may contribute to poor fetal outcomes and so, indirectly, to the chronic health burdens of the next generation. These effects are mediated in part through epigenetic mechanisms, which may interact with physiological responses to inequity and deprivation, such as the hormonal effects of chronic stress. There are good grounds for supporting the nutrition and the education of girls and young women impacted by these societal processes as a way of reducing the burden of chronic disease in the future.

The question of enforcement of ‘good maternal behaviour’ is an issue in some jurisdictions, especially in the USA, where imprisonment can be used as a sanction for women whose lack of compliance with expected behaviour is too conspicuous. In European countries, the law would generally not allow such coercive measures, as it does not recognize the fetus as a bearer of legal rights (Dorscheidt, 2010). Moreover, after the 2004 Vo v. France ruling of the European Court of Human Rights, it is clear that Article 2 of the European Convention of Human Rights (stating that ‘Everyone’s right to life shall be protected by law’) does not require member states to protect the life of the unborn.

Other recommendations for a pregnant woman are intended for the benefit of the maternal-fetal ‘dyad’, such as weight loss if the woman is obese, as this makes so much difference to the chances of an uncomplicated delivery (Mutsaerts et al., 2014). More broadly, psycho-physiological studies indicate that the fetus becomes responsive to, and presumably aware of, stimulation through multiple sensory modalities. For example, the fetus learns to recognize different voices and distinguish different languages (Karmiloff and Karmiloff-Smith, 2001); enthusiasts claim benefits from exposing the fetus to Mozart.

Fetal surveillance: from enabling ‘reproductive choice’ to allowing therapeutic interventions

At the same time as we take steps to support the healthy development of the fetus, there are two types of surveillance to which the fetus is subject. First is the monitoring of the pregnancy to identify opportunities for helpful interventions that will promote the joint welfare of the pregnant woman and the fetus. This includes checks on the woman’s blood pressure, her weight, her haemoglobin and her general health.

The second type of surveillance addresses the question of whether there are any specific problems with the growth and development of the fetus, as assessed by maternal blood tests (giving information about the chance of the fetus being affected by chromosomal abnormalities such as Down’s syndrome) and fetal ultrasound scans (checking principally for structural malformations). This second type of surveillance has usually, in the past, amounted to the question of whether this particular fetus is ‘good enough’ to be accepted and nurtured, or whether it would be better to end the pregnancy. Clearly these two types of surveillance are very different and, from the perspective of the fetus, diametrically opposed in purpose (Dondorp et al., 2015).

In the past, establishing the diagnosis of a genetic disorder in the fetus led to few options other than the decision whether to continue or to terminate the pregnancy. Given that a firm diagnosis required fetal tissue, and all methods of obtaining fetal tissue were invasive and carry a risk of miscarriage, it can be seen that those parents who were willing to accept the investigation would also, usually, be likely to decide to terminate the pregnancy if affected. It would be difficult to regard a fetus subject to such investigation as a patient, as one would not usually seek ‘to terminate a patient’. However, with the development of noninvasive prenatal testing (NIPT) of various types, this situation may be changing (Bianchi, 2012). Such tests examine the cell-free DNA in the maternal blood, about 5–10 per cent of which is derived from the chorion (the outer fetal membrane, effectively the placenta) from about 8–9 weeks’ gestation. This gives information about the genetic constitution of the fetus. Thus, relatively simple and perfectly safe maternal blood tests can indicate an increased chance of the fetus being affected by a chromosomal trisomy, such as Down’s syndrome, and can be diagnostic of a variety of other disorders. The performance of such tests (especially their sensitivity and their positive predictive value) depend critically upon precisely what assay is being performed under what circumstances, and generalizations should be avoided (Nuffield Council on Bioethics, 2017).

If a couple is known in advance to be at risk of an inherited disorder in their future children, then it will often be possible to arrange for NIPT from 9–10 weeks in a pregnancy, to see if the fetus will be affected. This result may be diagnostic, as when the disorder is a dominant condition transmissible from the father, but in other circumstances it may not be so highly accurate – the positive predictive value may be significantly below 100 per cent – so that an invasive test to confirm the NIPT result may then be warranted, if important decisions are to be made on the findings (Norton et al., 2015).

Currently, where NIPT is provided in the context of prenatal screening, this is with the aim of enabling pregnant women (and their partners) to make a wellinformed choice between terminating an affected pregnancy or preparing for the birth of a child with special needs (Dondorp et al., 2015). However, the same technological developments that have led to a considerable improvement of prenatal screening with this aim, will also contribute to developing positively therapeutic interventions with the aim of improving pregnancy outcomes. This entails a blurring of the distinction between the two types of fetal investigation (Jorgensen et al., 2014).

The novel fea...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Notes on contributors
• Acknowledgements
• PART I Introduction
• PART II The fetus as a patient: a useful concept?
• PART III The fetus as a patient: where does that leave the pregnant woman?
• PART IV The fetus as a patient: challenges for clinical care pathways and interactions
• PART V The fetus as a patient: legal perspective
• Index