Professionally Responsible Counseling When a Fetal Anomaly is Diagnosed by Ultrasound

INTRODUCTION

This article provides an ethically justified, clinically practical guidance for counseling a pregnant woman when a fetal anomaly has been diagnosed by obstetric ultrasound. This guidance is based on professional ethics in obstetrics.¹ Professional ethics in obstetrics is based on ethical principles and professional virtues. Two ethical principles are pertinent to the topic of this article: the ethical principles of beneficence and the ethical principle of respect for patient autonomy. We therefore being with an explanation of these two ethical principles. We then deploy these ethical principles to explicate the ethical concept of the fetus as a patient. On the basis of this ethical concept, we address counseling a pregnant woman when a fetal anomaly has been diagnosed by obstetric ultrasound.

ETHICAL PRINCIPLES OF BENEFICENCE AND RESPECT FOR PATIENT AUTONOMY

ETHICAL CONCEPT OF THE FETUS AS A PATIENT

The obstetrician’s clinical perspective on the pregnant woman’s health-related interests and the commitment to protect and promote her health-related interests creates prima facie beneficence-based obligations to her. The pregnant woman’s own perspective on her interests and the physician’s commitment to respect her values and preferences creates prima facie autonomy-based obligations owed to her. The fetus, however, cannot meaningfully be said to possess values and beliefs, because of its insufficiently developed central nervous system. There is therefore no valid basis for claiming that a fetus has a perspective on its interests, which means that there can be no autonomy-based obligations to any fetus.¹ Nonetheless, the obstetrician has a perspective on the fetus’s health-related interests and therefore can have prima facie beneficence-based obligations to the fetus, but only when the fetus is a patient. Because of its centrality for the ethical management of pregnancies complicated by fetal anomalies, the ethical concept of the fetus as a patient requires careful explication.

Prima facie beneficence-based ethical obligations to the fetus exist when the fetus can later, after birth, achieve independent moral status.¹ The fetus is a patient when two conditions are met: (1) the fetus is presented to the physician or other healthcare professional; and (2) there exist medical interventions, whether diagnostic or therapeutic, that reliably can be expected to result in a greater balance of clinical goods over clinical harms for the fetus in its future. The ethical concept of the fetus as a patient therefore depends on links to later becoming a child and, later still, achieving independent moral status.

One link to becoming a patient is viability, which should not be viewed as an exclusively biological property of the fetus. Instead, viability must be understood in terms of both biological and technological factors. It is only by virtue of both factors that a viable fetus can exist ex utero and subsequently become a child and later achieve independent moral status. In countries with different levels of technological capacity, viability is a close correlate of access to technological capacity. When access to technology is present, viability occurs at approximately 24 weeks of gestational age.^1,3

The only possible link between the previable fetus and the child it can become is the pregnant woman’s autonomy, because technological factors cannot result in the previable fetus becoming a child. When the fetus is previable, the link between a fetus and the child it can become can be established only by the pregnant woman’s decision to confer the status of being a patient on her previable fetus. The previable fetus has no claim to the status of being a patient independently of the pregnant woman’s autonomy. The pregnant woman is therefore free to withhold, confer, or, having once conferred, withdraw the status of being a patient on or from her previable fetus according to her own values and beliefs. The previable fetus is presented to the physician solely as a function of the pregnant woman’s autonomy.

The ethical concept of the fetus as a patient has an important ethical and clinical implication: the divisive language of fetal rights has no meaning or clinical application to the fetus in obstetric practice. Current controversies about “right to life,” especially its possible limited application to patients from non-Western cultures, can thus be avoided.

MANAGEMENT OPTIONS BEFORE VIABILITY FOR PREGNANCIES COMPLICATED BY FETAL ANOMALIES

Before viability, the management of a pregnancy complicated by fetal anomalies is ethically straightforward. The pregnant woman is free to withhold or withdraw the moral status of being a patient from any previable fetus, including the fetus newly diagnosed with anomalies. Respect for her autonomy in this matter creates the prima facie ethical obligation to be rigorously nondirective in counseling. The physician should offer the clinical alternatives of continuation or termination of pregnancy, but not make any recommendations for or against either alternative. For anomalies for which there is accepted third-trimester maternal-fetal medical or surgical intervention, e.g., spina bifida, these alternatives should also be offered and its nature and limitations explained. The physician’s personal views about rearing a child with such an anomaly or about abortion should play no role in the counseling process.

If the woman elects an abortion, it should be performed unless the physician has moral objections to abortion in individual conscience, which should be respected by the patient and the physician’s colleagues. As a matter of professional conscience, a physician unwilling to perform abortions should nonetheless make an appropriate referral. If the woman elects to continue her pregnancy, she should be apprised about decisions that will need to be made later so that she can begin to plan the rearing of her child.¹

Respect for autonomy means that the obstetrician should not judge the reasons a woman has for terminating a previable pregnancy. Respect for autonomy also means that the obstetrician should be alert to substantially controlling or even coercive influences on her decisions about the clinical management of a pregnancy, such as from her husband, partner, or potential grandparents, and should advocate for her autonomous, informed decision, in order to protect her from such substantial control and coercion.¹

An important subset of the option of termination of pregnancies is fetal reduction and selective termination of multiple pregnancies.¹ There are three ethically justifiable indications for reduction or selective termination of multiple pregnancies, related to three possible goals for a multiple pregnancy: (1) achieving a pregnancy that results in a live birth with one or more infants with minimal neonatal morbidity and mortality, (2) achieving a pregnancy that results in a live birth of one or more infants without anomalies detected antenatally, and (3) achieving a pregnancy that results in a singleton live birth.¹

MANAGEMENT OPTIONS aFTER VIABILITY FOR PREGNANCIES COMPLICATED BY FETAL ANOMALIES

After viability, the obstetrician has the prima facie ethical obligation to recommend and provide usual obstetric management as the standard of care. The goal of this standard of care is to optimize perinatal outcome by implementing effective antepartum and intrapartum diagnostic and therapeutic modalities.¹

There is an ethically justified exception to this beneficence-based, prima facie ethical obligation: termination of pregnancy after fetal viability when ethically justified criteria are satisfied. These are (1) certainty of diagnosis, and either (2a) certainty of death as an outcome of the anomaly diagnosed or (2b) in some cases of short-term survival, certainty of the absence of cognitive developmental capacity as an outcome of the anomaly diagnosed.¹ When these criteria are satisfied, recommending a choice between usual management and termination of pregnancy is ethically justified. Anencephaly is a classic example of a fetal anomaly that satisfies these criteria.¹

A strong ethical argument can also be made that anomalies such as trisomy 13, renal agenesis, thanatophoric dysplasia, alobar holoprosencephaly, and hydranencephaly should also count as anomalies that satisfy the two criteria.¹ This is because, with these anomalies, either death is already a certain or a near-certain outcome or the certain or near-certain absence of cognitive developmental capacity is tantamount to death and so in beneficence-based clinical judgment causing death is an acceptable outcome.

For many anomalies, such as Down syndrome, spina bifida, isolated hydrocephalus, diaphragmatic hernia, achondroplasia, and most cardiac anomalies, neither death nor absence of cognitive developmental capacity is a certain or near-certain outcome. Although these anomalies involve incremental risks of mental and physical morbidity and mortality, they do not satisfy the two criteria for third-trimester abortion. Under no rigorous clinical evaluation can these conditions be regarded as tantamount to death or absence of cognitive developmental capacity. For such anomalies, the beneficence-based prohibition against terminating the life of a viable fetus remains robustly intact. Any clinical judgment that does not address and defeat this beneficence-based prohibition is defective on ethical grounds and therefore is inconsistent with the professional integrity.¹

Many anomalies may involve burdens on patients, parents, society, communities, and social institutions. However, while those burdens may often be significant, they are concerns distinct from the obstetrician’s beneficence-based, prima facie ethical obligation to protect and promote the fetal patient’s interest just as they are distinct from what is in any patient’s interests. Moreover, in theories of justice that emphasize equality of opportunity for human experience and development, the assumption of such burdens by society would be ethically obligatory.⁷ Society has a justice-based obligation to look after its disabled and to maximize their developmental potential so that they can live fulfilling lives. Thus, in addition to violating the beneficence-based prohibition against killing, third-trimester abortion of fetal patients with Down syndrome and the other anomalies that do meet the two criteria enlists medicine to escape from the well-founded, justice-based obligations of parents, institutions, and society. We are hard-pressed, indeed, to see how this would be consistent with professional integrity and social justice.

Another exception to usual obstetric management is nonaggressive obstetric management. By this we mean that fetal monitoring and cesarean delivery are foregone because there is no beneficence-based, prima facie ethical obligation to provide them when two criteria are satisfied: there is (1) a very high probability, but sometimes less than complete certainty, about the diagnosis and, either (2a) a very high probability of death as an outcome of the anomaly diagnosed or (2b) survival with a very high probability of severe and irreversible deficit of cognitive developmental capacity as a result of the anomaly diagnosed.¹ When these two criteria apply, a choice between usual or nonaggressive obstetric management should be offered. Encephalocele is a classic example of a fetal anomaly that satisfies these criteria.

CONCLUSION

The diagnosis of a fetal anomaly with ultrasound is only the beginning of its professionally responsible management. Counseling of the pregnant woman is just as important, perhaps even more important. This counseling should be done professionally, using clinical standards generated by the prima facie ethical principles of beneficence and respect for autonomy.

REFERENCES

1. McCullough LB, Coverdale JH, Chervenak FA. Professional Ethics in Obstetrics and Gynecology. Cambridge and New York: Cambridge University Press; 2020.

2. Beauchamp TL, Childress JF. Principles of biomedical ethics.New York: Oxford University Press; 2013.

3. McCullough LB, Chervenak FA. The Professional Responsibility Model of Perinatal Ethics. Berlin: Walter de Gruyter; 2014.

4. Temkin O, Temkin CL, Edelstein L. Ancient medicine. Baltimore, MD: Johns Hopkins University Press; 1967. p. 3.

5. Hippocrates Epidemics Jones WHS, ed. trans Hippocrates, vol. 1, Cambridge, MA: Harvard University Press; 1923. p. 165.

6. Engel GL. The need for a new medical model: a challenge for biomedicine. Science 1977;196(4286):129–136. DOI: 10.1126/science.847460.

7. Sen A. Inequality reexamined. Cambridge, MA: Harvard University Press; 1992.