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Responsibly counselling women about the clinical management of pregnancies complicated by severe fetal anomalies
  1. Frank Chervenak1,
  2. Laurence B McCullough2
  1. 1Department of Obstetrics and Gynecology, Weill Medical College of Cornell University, New York, New York, USA
  2. 2Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA
  1. Correspondence to Dr Laurence B McCullough, Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza MS 420, Houston, TX 77030-3411, USA; mccullou{at}bcm.edu

Abstract

Heuser, Eller and Byrne provide important descriptive ethics data about how physicians counsel women on the clinical management of pregnancies complicated by severe fetal anomalies. The authors present an account of what such counselling ought to be based on, the ethical concept of the fetus as a patient and the professional responsibility model of obstetric ethics. When there is certainty about the diagnosis and either a very high probability of either death as the outcome of the anomaly or survival with severe and irreversible deficit of cognitive developmental capacity as a result of the anomaly diagnosed, the pregnant woman should be offered the alternatives of aggressive and non-aggressive obstetric management and induced abortion before viability. It is also ethically permissible to offer feticide followed by termination of pregnancy after viability in such cases. This ethically justified approach will reduce the variation in the actual practices of specialists in maternal–fetal medicine described by Heuser, Eller and Byrne.

  • Severe fetal anomalies
  • fetus as a patient
  • professional responsibility model of obstetric ethics
  • non-aggressive obstetric management
  • abortion
  • history of health ethics/bioethics
  • paediatric ethics
  • futility
  • ethics in obstetrics and gynaecology
  • history of medical ethics
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Introduction

Cara Heuser, Alexandra Eller and Janice Byrne provide valuable descriptive ethics data about counselling pregnant women on the management of pregnancies complicated by severe fetal anomalies focusing on the roles of aggressive and non-aggressive management of these pregnancies.1 Descriptive ethics about physicians' self-reported behaviour provides an important point of departure for normative ethical enquiry.

Heuser, Eller and Byrne report that the vast majority of their respondents accept a request for non-intervention and encourage non-intervention as an appropriate clinical management of such pregnancies. A substantial majority of their respondents accept a request for full obstetric intervention but also discourage it in the informed consent process for the management of these pregnancies. Termination of pregnancy is also offered, influenced by gestational age.1

The ethical concept of the fetus as a patient

Argument-based reasoning2 about how obstetricians should understand their professional responsibilities in counselling pregnant woman requires attention to ethical concept of the fetus as a patient. The general concept of a human being as a patient originates the medical ethics of the eighteenth-century Scottish physician-ethicist, John Gregory (1724–1773). Becoming a patient occurs when: (a) a human being is presented to a physician or other healthcare professional and (b) there exist forms of clinical management that are reliably expected to result in a greater balance of clinical goods over clinical harms for that human being.3

Being a patient is a function of a social role, patient, created by the physician's commitment to taking professional responsibility for the health and life of a human being. Becoming a patient in professional medical ethics does not require that the patient has an independent moral status, that is, generating obligations to one based solely on some property or properties that one possesses independent of every other entity. The ethical concept of being a patient is primarily beneficence-based because being a patient is a form of dependent moral status.

We have argued elsewhere that the previable fetus becomes a patient when the pregnant woman confers that status on it. Inasmuch as there is no transculturally or philosophically authoritative account of the independent moral status of the fetus, the pregnant woman is free to confer, withhold or having once conferred withdraw this moral status based on her own values and beliefs. The viable fetus, because it can exist ex utero with full neonatal intensive care support, becomes a patient when the pregnant woman is presented for obstetric care. When the fetus is a patient, the physician has beneficence-based obligations to it. The physician also has beneficence-based and autonomy-based obligations to the pregnant woman. In all cases, beneficence-based obligations to the fetal patient must be balanced in evidence-based, rigorous clinical ethical judgement against beneficence-based and autonomy-based obligations to the pregnant patient. None of these three obligations automatically overrides the others; all are prima facie obligations. We emphasise that the pregnant woman has beneficence-based obligations to the fetal patient, limited by her obligation to take only reasonable risks to her own life and health in fulfilling those beneficence-based obligations.4 This is the professional responsibility model of obstetric ethics.5

Counselling about the clinical management of pregnancy complicated by a severe fetal anomaly

The diagnosis of a severe fetal anomaly, when reliably made, raises the issue of setting ethically justified limits on the physician's obligation to protect the life and health of the fetal patient. The first step in addressing this issue is recognising that ‘severe fetal anomaly’ is a vague concept because it maps considerable biological variability. Heuser, Eller and Byrne acknowledge this clinical reality when they distinguish between ‘uniformly’ and ‘commonly' lethal anomalies.1

We have argued elsewhere that limits on the beneficence-based obligations of the physician and pregnant woman to the fetal patient are reached in either of two clinical circumstances. First, there is a certainty about the diagnosis and a very high probability of death as the outcome of the anomaly diagnosed. Paradigm diagnoses are anencephaly and triploidy. Second, there is certainty about the diagnosis and a very high probability of either death or survival with severe and irreversible deficit of cognitive developmental capacity as a result of the anomaly diagnosed. Paradigm diagnoses are holoprosencephaly and trisomy 13. In such clinical circumstances, the fetal patient should be considered a dying patient.6 ,7 It has been well understood in medical ethics for centuries (Gregory is an example3) that aggressive clinical management is not obligatory in the care of dying patients.

When either of the above two sets of criteria are satisfied, the obstetrician should offer non-aggressive obstetric management and explain that this means fetal monitoring or caesarean delivery will not be performed for fetal indications. The alternative of aggressive obstetric management should also be offered because some pregnant women will be willing to accept the risks of caesarean delivery, which are intrinsically medically reasonable, in order to increase the probability of live birth. This is a reasonable request for psychosocial reasons and should be implemented with the proviso that transfer to the neonatal intensive care unit is not obligatory. It is also ethically permissible to offer feticide followed by termination of pregnancy after viability in pregnancies meeting either of the above two sets of criteria.8 ,9 Gestational age is not relevant to the clinical application of these criteria. When a fetal anomaly of any kind is diagnosed in a pregnancy before viability, the physician should explain the nature and prognosis of the anomaly and offer both continuation of the pregnancy and induced abortion. The latter obligation implements the autonomy-based professional obligation of the physician in the informed consent to empower the exercise of autonomy by the pregnant woman in the informed consent process about the subsequent clinical management of her pregnancy.8 ,9

Conclusion

The ethical framework that we have described enables obstetricians to responsibly reduce the variation in the counselling process described by Heuser, Eller and Byrne. Responsibly reducing variation in the processes of patient care is the definition of improved quality. Argument-based normative ethics, informed by the results of descriptive ethics, has an essential role to play in the improvement of the counselling of women on the management of pregnancies complicated by severe fetal anomalies.

References

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Footnotes

  • Linked article 100340.

  • Competing interests None.

  • Provenance and peer review Commissioned; internally peer reviewed.

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