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Seminars in Fetal & Neonatal Medicine 17 (2012) 252e255

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Seminars in Fetal & Neonatal Medicine

journal homepage: www.elsevier .com/locate/s iny

Ethical dimensions of fetal neurology

Frank A. Chervenak a,*, Laurence B. McCullough b

aNew York Presbyterian Hospital e Weill Medical College of Cornell University, New York, NY, USAbBaylor College of Medicine, Center for Ethics, Medicine, and Public Issues, Houston, TX, USA

Keywords:AbortionCephalocentesisEthicsFetal neurologyFetus as a patientNon-aggressive obstetric management

* Corresponding author. The New York Hospital eEast 68th Street e M713, New York, NY 10065, USA. T212 746 8727.

E-mail address: fac2001@med.cornell.edu (F.A. Ch

1744-165X/$ e see front matter � 2012 Elsevier Ltd.doi:10.1016/j.siny.2012.05.006

s u m m a r y

Ethics is an essential dimension of the management of counseling a pregnant woman when a neurologicanomaly is diagnosed. This paper provides an overview of obstetric ethics, with a central focus on theethical concept of the fetus as a patient. On this basis, the authors analyze the ethical and clinicaldimensions of the obstetric management options for pregnancies complicated by a neurologic anomaly.These management options include aggressive management, induced abortion, termination of pregnancyduring the third trimester, non-aggressive obstetric management, and cephalocentesis.

� 2012 Elsevier Ltd. All rights reserved.

1. Introduction

Ethics is an essential dimension of the management of preg-nancies complicated by a neurologic anomaly. This article providesan introduction to obstetric ethics and its core ethical concept ofthe fetus as a patient. On this basis, the authors analyze the ethicaland clinical dimensions of the obstetric management options forpregnancies complicated by a neurologic anomaly. Thesemanagement options include aggressive management, abortion,termination of pregnancy during the third trimester, non-aggressive management, and cephalocentesis.

2. An introduction to perinatal ethics

2.1. Ethics

Ethics is a practical and intellectual undertaking with a longhistory in global cultures. Ethics should be distinguished frommorals or morality, because ethics is the disciplined study ofmorality. Morality concerns our actual behavior and our beliefsabout both right andwrong behavior, i.e. what one ought and oughtnot to do, and about good and bad character, i.e. virtues and vices.Our actual moral behavior and beliefs need constant improvement.To help achieve this goal, ethics asks a fundamental question, ‘Whatoughtmorality to be?’ Addressing this question adequately requirestwo further questions to be addressed, ‘What ought our behavior tobe?’, and ‘What virtues ought to be cultivated in our moral lives?’

Cornell Medical Center, 525el.: þ1 212 746 3046; fax: þ1

ervenak).

All rights reserved.

Ethics in perinatal medicine deals with these same questions,focusing especially on what morality ought to be for obstetriciansand for pregnant women.1

Formany centuries, the bedrock for whatmorality ought to be inclinical practice has been the professional obligation to protect andpromote the health-related interests of the patient.2 This generalethical obligation needs to be made more specific if it is to guideclinical practice reliably. Ethics can be applied to guide clinicalpractice by attending to two perspectives in terms of which thepatient’s interests can be understood e that of the physician andthat of the patient.1

2.2. Ethical principles of beneficence and respect for autonomy

The first and older of these two perspectives on the interests ofpatients in the history of global medical ethics is a rigorous clinicalperspective. Based on scientific knowledge, shared clinical experi-ence, and a careful, unbiased clinical evaluation of the patientfollowing the discipline of evidence-based reasoning, the physicianshould identify those clinical strategies that will most likelysupport the health-related interests of the patient and those thatare not expected to do so. Not all technically possible clinicalmanagement meets this test. The health-related interests of thepatient include preventing premature death and preventing andmanaging disease, injury, disability, unnecessary pain, andsuffering. These clinical realities constitute every patient’s health-related interests as a function of the competencies of medicine.The identification of a patient’s interests is not a function of thepersonal or subjective outlook of a particular physician but rather ofrigorous, evidence-based clinical judgment.

The ethical principle of beneficence structures obstetric clinicaljudgement about the health-related interests of the patient because

F.A. Chervenak, L.B. McCullough / Seminars in Fetal & Neonatal Medicine 17 (2012) 252e255 253

beneficence obliges the physician to seek the greatest balance ofclinical goods over clinical harms in the consequences of the physi-cian’s management of the clinical conditions and problems of thepregnantpatient and the fetal patient. Theprinciple of beneficence inperinatal medicine must be very carefully distinguished from theethical principle of non-maleficence, commonly known as primumnon nocere or ‘first, do no harm’.2 Contrary to the belief of manyphysicians, primum non nocere does not appear in the HippocraticOath or in any of the texts that accompany the Oath. Instead, theprinciple of beneficence was the primary consideration of theHippocratic writers.3 They urged physicians to benefit patients and,when approaching the limits of medicine to alter the course ofdisease or injury, to prevent needless iatrogenic harm to the patient.

Quite apart from historical concerns there are good ethicalreasons to be skeptical about the clinical adequacy of primum nonnocere as a basic principle of perinatal ethics. Virtually all medicalinterventions, including those common to obstetrics such asamniocentesis and cesarean delivery, involve unavoidable risks ofharm. If primum non nocere were the basic principle of obstetricethics most all of obstetric practice would be unethical. primum nonnocere is therefore essentially superseded in obstetric ethics by theprinciple of beneficence, because it alerts the physician to thosecircumstances in which a clinical intervention has the potential toharm a patient. When a clinical intervention is on balance harmfulto a patient, it should not be employed. That is, primum non nocereas a corollary of beneficence, makes it obligatory not to act in waysthat are on balance only harmful. In particular, as Strong puts it,there is a powerful beneficence-based prohibition against killing.4

This is obviously of direct relevance to the ethical evaluation ofthe management option of cephalocentesis in beneficence-basedclinical judgment, as we shall see below.

The physician’s perspective on the interests of the patient is notthe only legitimate perspective on those interests. The perspectiveof the patient on the patient’s interests is equally worthy ofconsideration.1 Each adult patient has developed a set of values andbeliefs according to which she is surely capable of making her ownjudgments about what will and will not protect and promote herhealth-related and other interests.

The adult pregnant woman should be assumed by the perinatalspecialist to be competent to determine which clinical strategiesserve her interests and which do not. In making such judgments itis important to note that the pregnant woman will utilize valuesand beliefs that can range far beyond the scope of her health-related interests, e.g. religious beliefs or beliefs about how manychildren she wants to have. Beneficence-based clinical judgment,because it rests on the competencies of medicine, does notauthorize the physician to assess the worth or meaning to thepatient of the patient’s non-health-related interests. These tasksare the pregnant patient’s prerogative. The patient’s perspective iscaptured by the ethical principle of respect for autonomy, whichobligates the physician to respect the integrity of the patient’svalues and beliefs, to respect her perspective on her interests, toempower her with information in the informed consent process,and to implement only those clinical strategies authorized by her asthe result of the informed consent process unless there is someoverriding, well-established objection to doing so.

Respect for autonomy is put into clinical practice by theinformed consent process. This process is understood to have threeelements: (i) disclosure by the physician to the patient of adequateinformation about the patient’s condition and its management; (ii)understanding of that information by the patient; (iii) a voluntarydecision by the patient to authorize or refuse clinical management.5

There are obviously beneficence-based and autonomy-basedobligations to the pregnant patient.1 The obstetrician’s perspectiveon the pregnant woman’s interests provides the basis for

beneficence-based obligations owed to her. Her own perspective onthose interests provides the basis for autonomy-based obligationsowed to her. Because it has an insufficiently developed centralnervous system the fetus cannot be said to possess values andbeliefs. Thus, there is nobasis for saying that a fetus has aperspectiveon its interests. There can therefore be no autonomy-based obliga-tions to any fetus.1Hence the languageof fetal rights has nomeaningor application in obstetric ethics, despite its common use in publicand political discourse. The professional responsibility model ofobstetric ethics avoids the gridlock of clashing rights in favor ofobligations to both the pregnant and fetal patients.6

Obviously, the physician has a perspective on the fetus’s health-related interests and the physician can have beneficence-basedobligations to the fetus, but only when the fetus is a patient.Because of its systematic importance for obstetric ethics, the topicof the fetus as patient requires careful consideration.

3. The ethical concept of the fetus as patient

The ethical concept of a human being as a patient has twocomponents: (i) that human being is presented to a physician orother healthcare professional; and (ii) there exist clinical inter-ventions that are reliably expected to benefit the patient clinically.The phrase, ‘the fetus as patient’, was introduced in connectionwith developments in fetal diagnosis and management strategiesto optimize fetal outcome and has become widely accepted.7 Theethical concept of the fetus as a patient has considerable clinicalsignificance because, when the fetus is a patient, directive coun-seling, i.e. recommending clinical management for fetal benefit,would be appropriate and, when the fetus is not a patient, non-directive counseling, i.e. offering but not recommending clinicalmanagement, would be appropriate. However, these apparentlystraightforward roles for directive and non-directive counseling areoften difficult to apply in actual perinatal practice because ofuncertainty about when the fetus is a patient.

One approach to resolving this uncertainty would be to arguethat the fetus is or is not a patient in virtue of personhood, or someother form of independent moral status. We will show that thisapproach fails to resolve the uncertainty and we will thereforedefend an alternative approach that does resolve the uncertainty.

Independent moral status for the fetus means that characteris-tics that the fetus possesses in and of itself and, therefore, inde-pendently of the pregnant woman or any one else, generate andtherefore ground obligations to the fetus on the part of the preg-nant woman and her physician.

A striking variety of characteristics has been proposed for thisrole in the centuries-old literature on the independent moral statusof the fetus, including moment of conception, implantation, centralnervous system development, quickening, and the moment ofbirth.8,9 Given the variability of proposed characteristics, there havebeen and are markedly varied views about when the fetus isthought to acquire independent moral status. Some take the viewthat the fetus has independent moral status from the moment ofconception or implantation.9 Others believe that independentmoral status is acquired in degrees, thus resulting in ‘graded’moralstatus.10 Still others hold, at least by implication, that the fetusnever has independent moral status so long as it is in utero.11

Despite a continuing and voluminous theological and philo-sophical literature on this subject stretching over recorded globalhistory, there has been no agreement on a single authoritativeaccount of the independent moral status of the fetus. Given theabsence of a single methodology that would be authoritative for allof the markedly diverse theological and philosophical schools ofthought involved in this endless debate, agreement is impossible.For agreement ever to be possible, debates about such a final

F.A. Chervenak, L.B. McCullough / Seminars in Fetal & Neonatal Medicine 17 (2012) 252e255254

authority within and between theological and philosophicaltraditions would have to be resolved in a way satisfactory to all.Unfortunately for advocates and opponents of the independentmoral status of the fetus, such agreement is an inconceivableoutcome of this long history. We therefore urge perinatologists toabandon futile attempts to understand the fetus as patient in termsof independent moral status of the fetus and turn to an alternativeapproach that identifies ethically distinct senses of the fetus aspatient and their clinical implications for obstetric practice.

3.1. Beneficence-based obligations to the fetus

This professional-responsibility approach to the ethical conceptof the fetus as a patient begins with the recognition that beinga patient does not require that the fetus possesses independentmoral status. Rather, being a patient means that one can benefitfrom the applications of the clinical knowledge and skills of thephysician. Put more precisely, a human being, with or withoutindependent moral status, is properly regarded as a patient whentwo conditions are met: that human being (i) is presented to thephysician (ii) there exist clinical interventions that are reliably ex-pected to be efficacious, in that they are reliably expected to resultin a greater balance of clinical goods over clinical harms for thehuman being in question.1

The authors have argued elsewhere that beneficence-basedobligations to the fetus exist when the fetus can later achieveindependent moral status.1 The key question becomes, ‘What arethe links that can reliably be established between a fetus and itslater achieving independent moral status?’.

One such link is viability, introducing the first ethical sense ofthe fetus as patient. Viability is not, however, an intrinsic propertyof the fetus, because viability must be understood in terms of bothbiological and technological factors.1,12 When a fetus is viable, i.e.when it is of sufficient maturity so that it can survive into theneonatal period and later achieve independent moral status, giventhe availability of the requisite technological support, and when itis presented to the physician, the fetus is a patient. The fetus at termis a patient when the pregnant woman presents herself toa physician or a hospital or clinic for obstetric services.

Viability exists as a function of biomedical and technologicalcapacities, which are different in different parts of the world. Asa consequence there is, at the present time, no worldwide, uniformgestational age to define viability. In the USA and other developedcountries, the authors believe, viability presently occurs at about 24completed weeks of gestational age.13,14

The only possible link between the previable fetus and its laterachieving independent moral status is the pregnant woman’sautonomy. This is because technological factors cannot result in thepreviable fetus surviving ex utero. This is simply what ‘previable’means. The link, therefore, between a fetus and its later achievingindependent moral status, when the fetus is previable, can beestablished only by the pregnant woman’s decision to confer thestatus of being a patient on her previable fetus. The previable fetus,therefore, has no claim to the status of being a patient indepen-dently of the pregnant woman’s autonomy. The pregnant woman isfree to withhold, confer, or, having once conferred, withdraw thestatus of being a patient on or from her previable fetus according toher own values and beliefs. The previable fetus is presented to thephysician solely as a function of the pregnant woman’s autonomy.

4. Management options for pregnancies complicated bya neurologic anomaly

Before viability, the management of a pregnancy complicated bya neurologic anomaly is ethically straightforward. The pregnant

woman is free to withhold or withdraw the moral status of beinga patient from any previable fetus, including one that has a neuro-logic anomaly. When such an anomaly is detected before viability,counseling should be rigorously non-directive. That is, the physi-cian should not attempt to influence the woman’s decisions. Toachieve this goal, the woman should be given the choice betweencontinuing her pregnancy to viability and thus to term or termi-nation of pregnancy. If the woman elects an induced abortion, itshould be performed or an appropriate referral made.15 If thewoman elects to continue her pregnancy she should be apprisedabout decisions that will need to be made later.1

After viability, aggressive management is the ethical standard ofcare. By aggressive management, we mean optimizing perinataloutcome by utilizing effective antepartum and intrapartum diag-nostic and therapeutic modalities.

One important exception to aggressive management is termi-nation of pregnancy after fetal viability. This exception applieswhen there is (1) certainty of diagnosis, and either (2a) certainty ofdeath as an outcome of the anomaly diagnosed, or (2b) in somecases of short-term survival, certainty of the absence of cognitivedevelopmental capacity as an outcome of the anomaly diag-nosed.1,16,17 When these criteria are satisfied, recommendinga choice between non-aggressive management and termination ofpregnancy is justified. Anencephaly is a classic example ofa neurologic anomaly of the fetus that satisfies these criteria.

A second exception to aggressive management is non-aggressive management. This exception applies when there is (1)a very high probability but sometimes less than complete certaintyabout the diagnosis and, either (2a) a very high probability of deathas an outcome of the anomaly diagnosed, or (2b) survival witha very high probability of severe and irreversible deficit of cognitivedevelopmental capacity as a result of the anomaly diagnosed.1,18

When these two criteria apply, both aggressive and non-aggressive management can be justified, from which it followsthat a choice between aggressive or non-aggressive managementcan be recommended. Encephalocele is a classic example of a fetalbrain anomaly that satisfies these criteria.

A third important and ethically complex exception to aggressivemanagement is cephalocentesis.19,20 There are compelling ethicalreasons, well founded in beneficence, for concluding thatcontinuing existence of fetuses with isolated hydrocephalus is intheir interests.4 Beneficence directs the physician to avoidmortalityand morbidity for the fetal patient. Beneficence also directs thephysician to clinical interventions that ameliorate disablingconditions such as mental retardation. The probability of mentalretardation does not diminish the interests of the fetal patient withisolated hydrocephalus in continuing existence because it isimpossible to predict which fetuses with isolated hydrocephaluswill have mental retardation and because the degree of mentalretardation cannot be predicted in advance.

In light of this ethical analysis of the at-term fetal patient’sinterests, the beneficence-based obligation of the physician caringfor the fetus with isolated hydrocephalus is to recommend stronglyand to attain the woman’s consent to perform a cesarean deliverybecause this clinical intervention clearly involves the least risk ofmortality, morbidity, and handicap for the fetus compared withcephalocentesis to permit subsequent vaginal delivery. Even whenperformed under maximal therapeutic conditions (i.e. undersonographic guidance), cephalocentesis cannot reasonably beregarded as protecting or promoting the interests of the fetalpatient with isolated hydrocephalus. Cephalocentesis, employedwith a destructive intent, is altogether antithetical to thebeneficence-based prohibition against killing.4

If the pregnant woman adamantly refuses cesarean delivery, thephysician confronts tragic circumstances. If neither cesarean

Practice points

� The ethical concept of the fetus as a patient should

guide perinatologists in the management of pregnan-

cies complicated by neurologic anomalies.

� Counseling pregnant women about themanagement of

a previable pregnancy complicated by a neurologic

anomaly should be non-directive.

� After viability, aggressive obstetric management is the

standard of care, with three exceptions: termination of

pregnancy, non-aggressive obstetric management, and

cephalocentesis which should be offered and per-

formed only when ethically justified.

F.A. Chervenak, L.B. McCullough / Seminars in Fetal & Neonatal Medicine 17 (2012) 252e255 255

delivery nor cephalocentesis is performed, the woman is at risk foruterine rupture and death, and the fetal patient is at risk for death.This logic of beneficence-based obligations is to avoid such totaland irreversible harm. Therefore we believe that because of thegrave nature of possible consequences for thewoman and her fetus,because of the dangers for the woman of performing a surgicalprocedure on a resistant patient, and because of the pitfalls ofattempted legal coercion, the physician should act on beneficence-based obligations to the woman in such an extreme circumstance.In addition, to fail to respect an unwavering, voluntary, andinformed refusal of a cesarean delivery would count as a funda-mental assault on the woman’s autonomy. The fetal patient is athigh risk for death under either alternative. The woman’s death, atleast, can be avoided. Serious beneficence-based obligations to thefetal patient on the part of both the physician and the pregnantwoman will probably be violated and a needless death will mostprobably result, however, by performing a cephalocentesis. Hereinlies the tragedy of these circumstances.

Some abnormalities that occur in association with fetalhydrocephalus are severe in nature for the child afflicted withthem. We define ‘severe’ abnormalities as those that either are (i)incompatible with continued existence, e.g. thanatophoricdysplasia with cloverleaf skull, or (ii) compatible with survival insome cases but result in virtual absence of cognitive function, e.g.trisomy 18 or alobar holoprosencephaly.1 Because there is noavailable intervention to prevent postnatal death in the first group,beneficence-based obligations of the physician and the pregnantwoman to attempt to prolong the life of the fetal patient are non-existent. No ethical theory and no version of obstetric ethics basedon both beneficence and respect for autonomy obligate thephysician to attempt the impossible. For the second group,beneficence-based obligations of the physician and the pregnantwoman to sustain the life of the fetal patient are minimal becausethe handicap imposed by the abnormality is severe. In these casesthe potential for cognitive development e and therefore theachievement of human and social goods, e.g. relationships withothers e are virtually absent. Such fetuses are fetal patients towhich there are owed only minimal beneficence-basedobligations.

Because there are no weighty beneficence-based obligations tothe fetus in such clinical and ethical circumstances, the physicianmay justifiably recommend a choice between cesarean delivery andcephalocentesis to enable vaginal delivery. Cesarean deliverypermits women who wish to do so to have a live birth and satisfyreligious or other moral convictions or help with the grievingprocess. A cesarean delivery performed in this clinical setting isbest viewed as an autonomy-based maternal indication.

5. Conclusion

Ethics is an essential dimension of the perinatal management ofpregnancies complicated by a neurologic anomaly. This article hasprovided an ethical framework for perinatal ethics and practicalguidance, based on that framework, for the management of thesepregnancies including aggressive management, termination ofpregnancy, non-aggressive management, and cephalocentesis. Inthe authors’ view, managing pregnancies complicated by a neuro-logic anomaly without careful attention to their ethical dimensionsis clinically inappropriate.

Conflict of interest statement

None declared.

Funding sources

The study was funded with our department’s support.

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