The ethical issues behind the management of a fetus with a serious abnormality and the decisions made in relation to the outcome of the pregnancy are complex. This reflective paper deals with the ethical principles of managing a pregnancy with a congenital anomaly, with particular emphasis on the fetus with a serious cardiac abnormality. One major ethical concern is whether the fetus is or is not independent being to whom obligations of beneficence are owed. We review the debate on this matter, and suggest that it is ethically more appropriate for physicians who are involved in management of fetal abnormality not to adopt and insist on their own position on this matter. Rather, the appropriate course is to respect the pregnant woman's own view of her fetus and how it should be regarded. This is an application of the principle of respect for autonomy. Within this framework, we discuss the difficulties in counselling a pregnant woman or expectant couple in this situation, and recommend three key steps in ethically sound counselling.
Prenatal diagnostic ultrasound is widely performed especially in the western world. Parents attending a scan expect to be told that their baby is normal. They want to be reassured regarding the size and well-being of the infant, and may wish to know its sex [
Chervenak et al. have very eloquently described the basic ethical principles in the management of pregnancies complicated by fetal anomalies [
The crucial ethical question in pregnancies complicated by fetal anomalies, according to Chervenak et al. [
There are two possible approaches to dealing with the question of whether the fetus should be regarded as a patient. The first approach is that the physician comes to his or her own moral decision about whether the fetus should be regarded as a patient. This approach would require the physician to have a clear and sound moral or philosophical basis on which to make this decision. The second approach is that the physician adopts no view and leaves it up to the pregnant woman (and her partner, if involved) to decide how they wish to regard their fetus. This approach need not involve any moral or philosophical reasoning by the physician about the fetus; simply giving primacy to the pregnant woman’s autonomy in relation to decisions relating to her fetus.
Chervenak et al. [
If this argument is accepted, it means that the physician may end up having an obligation to seek to change or override pregnant woman’s wishes, for the sake of the fetus. If the physician believes the fetus is a patient, owed the same obligations as any other patient, then his or her obligation is directed to the best interests of the fetus. If the pregnant woman’s decisions are contrary to the best interests of the child that the fetus will become, then the physician has an obligation to protect those interests, just as for any child put at risk by parental decisions about medical treatment. The logic of Chervenak and his co-authors’ position implies that if attempts at persuasion do not work, the physician may have to seek legal avenues to override the woman’s decision, a course of action that could lead to court-enforced fetal surgery [
However, we caution against this approach, where the physician adopts an independent moral stance on the fetus, and seeks to act accordingly. Whilst the arguments of Chervenak et al. [
The well-known difference in views about the status of the fetus and the morality of abortion, across different cultures and religions also introduces a note of caution. A physician working in the multi-cultural setting of today’s increasingly globalised world is likely to encounter patients with quite varied views. In addition, laws relating to abortion vary considerably between jurisdictions. We suggest, then, that the second approach suggested above is preferable, namely for the physician to leave it to the pregnant woman (and partner) to decide if the fetus is to be regarded as a patient or not (providing that local laws permit abortion).
Adopting that view does not mean that the physician should not have a personal position on the status of the fetus, only that he or she should not attempt to impose it on his or her patients. If the wishes of the pregnant woman in regards to termination of her pregnancy or intra-uterine therapy for her fetus are significantly at odds with the physician’s moral views, the physician should exercise the right to conscientious objection, and hand over the care of the patient to another doctor [
When a personal moral judgement or religious belief alone prevents you from recommending some form of therapy, inform your patient so that they may seek care elsewhere, and recognise your right to refuse to carry out services which you consider to be professionally unethical, against your moral convictions, imposed on you for either administrative reasons or for financial gain or which you consider are not in the best interest of the patient.
This position is an attempt to negotiate between competing moral values: the woman’s autonomy and the physician’s integrity. The physician is not forced to do something he or she believes morally wrong, but the woman is also able to exercise her own choice.
Physicians working in obstetrics and gynaecology are presumably aware of the need to work through these issues of the status of the fetus, and to develop their position on abortion, as these issues form a major aspect of their practice. Paediatric cardiologists, on the other hand, have had little cause to consider such issues when working in their discipline, and may never need to do so. However, since it is now possible to detect fetal cardiac anomalies prenatally, cardiologists are coming face to face with these issues. There is usually (in most jurisdictions) an option to terminate an affected pregnancy and increasingly intrauterine interventions may be possible. Cardiologists must consider how they will counsel women in these situations, how directive they will be about which option should be chosen, and what they will do if the woman’s choice is not the one that optimizes life and health for the fetus.
Here, we set out the key steps in the counseling process from an ethical perspective, and make recommendations about ethically appropriate practice. These steps may take place over more than one consultation, and may need to be re-visited on each occasion, due to the emotional nature of the situation and the complexity of the information to be conveyed.
The first stage is providing accurate information about the diagnosis and prognosis in a manner and at a timing that the expectant parents are able to understand. Fetal cardiac anomalies like any congenital anomaly necessitate that physicians provide the parent adequate information. For any counselling to be credible the diagnosis must be accurate. This is even more relevant in the case of antenatally diagnosed cardiac anomalies. The general screening detection rates for congenital heart disease (CHD) vary between 14%–45% [
Shinebourne argues that most CHD are treatable with a resultant reasonable quality of life [
The physician needs to ensure the expectant parents understand the information about the nature of abnormality, the implications for the life of the future child, the possibility of intervention, and the risk for each intervention prenatally or postnatally. Parents also need to know the figures for local practice, for short, medium and long term outcomes, especially with respect to quality of life issues. The physician must be ready to discuss all of these issues with parents, providing the best available information, but also indicating the limits and uncertainties in this information and at a time when the parents are able to take in the information.
The next stage is to identify and present the options available. In brief, there are three main options: to continue with the pregnancy, to terminate the pregnancy (if legally permitted), or to consider prenatal intervention (if it is possible for the condition and available). If the decision is to continue with the pregnancy, there will perhaps be further decisions to make as to where the infant is to be delivered, the need for in utero transfer, and the mode of delivery [
Local laws and practices play an important role in the decision making. For example in some places it may be legal to terminate a pregnancy for maternal psychosocial reasons [
During the counselling, assuming a “neutral” tone on the part of the clinician—not overly pessimistic or optimistic—is vital [
The next stage is discussing the options with parents which is the most ethically contentious stage. There are different views even about which matters are ethically appropriate to raise and discuss, let alone about the degree to which it is appropriate to recommend or favour a particular option, rather than being as neutral as possible. Most professionals advocate non-directive [
Making a decision may not be easy for the parents. They have to come to terms with the abnormality and grieve the loss of a normal infant, as well as grapple with the questions of what they think about abortion, disability, their personal capacity to care for such an infant/child and their ideas about parenthood and family life. They may wish to talk through the options. They may want their cardiologist’s opinion about what they should do. Simply giving such an opinion may not be the best option as the personal circumstances of the clinician differ from that of the parents. It is preferable to discuss how one might decide, what factors one would take into account, in order to model to the expectant parents a way of thinking about the issue, rather than simply give them an answer.
The reasons for considering termination may be very variable, complicated and as Shaffer et al. [
Note that in these discussions, the pregnant woman (and partner) is not necessarily thinking of the the fetus as a baby, or being with independent rights. Ethically speaking, a pregnant woman’s decision need not be based on what is best for the future child; she may legitimately considers her own and others’ interests [
Specialist prenatal genetic counsellors may be particularly helpful for the expectant parents in talking through these sorts of issues, though such counselors may not have the detailed cardiac knowledge to answer the relevant questions. What parents need most from the paediatric cardiologist is the best available understanding of what their child’s life would be like, what sort of interventions would be needed and the risks of these to the child in the local setting.
If intrauterine interventions are available the further important issue is the pregnant woman’s autonomy versus the potential beneficence to the fetus and future child, where the pregnancy is going to continue and the fetus can reasonably be regarded as a patient. In this situation, the pregnant woman is in the ethical role of parent making decisions for the health of her future child—but she is also making decisions about herself and her own health. There is a conflict between American College of Obstetricians and Gynecologists and the American Academy of Pediatrics [
One important question to answer is whether the potential benefit to the fetus warrants the risks to the pregnant woman. Another important question is about the risks to the fetus: are they sufficiently outweighed by potential gains that it is reasonable to expect overall benefit to the fetus? One may argue that it is reasonable to offer and recommend fetal therapy if there is a probability of saving the life of the fetus or to prevent serious or irreversible disease to fetus or child and yet carries a low mortality/morbidity risk to the fetus/child and low morbidity to mother [
Arguably, such innovations as in utero fetal surgery need to be conducted and evaluated as research [
We have discussed this issue in detail in a separate paper [
The basic ethical principles of respect for autonomy and beneficence play the major role in grounding physicians’ ethical responsibilities in pregnancies where there may be a fetal cardiac anomaly. The physician’s main ethical obligation is to provide adequate and correct information, in a way that takes account of the extremely distressing circumstances, so as to allow for informed decision making. The ethical principle of autonomy creates a responsibility for the physician to help the pregnant woman make informed decisions based on her values and aspirations. A decision to terminate is partly a medical matter, relating to the procedure and its risks, and partly a personal moral decision bound by legal, cultural and religious constraints. Clinicians can advise regarding the former, but it is not within their realm to advise regarding the latter. The decision whether to continue or terminate in fetal cardiac anomalies is complicated by the fact that in the present era there are very few cardiac conditions which are not amenable to repair and with a reasonable future quality of life. Parents have to deal with shades of grey. There is the additional issue of increasing fetal interventions which may be helpful for the fetus/infant/child but may put the mother at risk and who in turn may opt out of any such intervention. A twin pregnancy with one affected twin further compounds the ethical considerations further. In all situations, the overriding imperative is to provide accurate information about the diagnosis and outcome, identify and discuss possible options and their potential consequences for the fetus and the pregnant woman.