Late termination of pregnancy: law, policy and ... - Wiley Online Library

DOI: 10.1111/j.1471-0528.2006.01144.x

Fetal medicine

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Late termination of pregnancy: law, policy and decision making in four English fetal medicine units H Statham,a W Solomou,b J Greenc a Centre for Family Research, University of Cambridge, Cambridge, UK b Department of Land Economy, University of Cambridge, Cambridge, UK c Mother and Infant Research Unit, Department of Health Sciences, University of York, Heslington, York, UK Correspondence: Dr H Statham, Centre for Family Research, University of Cambridge, Free School Lane, Cambridge CB2 3RF, UK. Email [email protected]

Accepted 15 September 2006. Published OnlineEarly 1 November 2006.

Objective UK abortion law allows terminations for fetal

abnormality without gestational limit. This study aimed to understand the decision-making experiences of fetal medicine professionals working within this legal framework. Design Qualitative study using semistructured interviews. Setting Four English fetal medicine units. Sample Fifteen doctors and midwives working in fetal medicine units and the Director of a related voluntary sector group. Methods Thematic analysis of transcribed interviews. Main outcome measures Attitudes to abortion legislation;

how decisions are made about the offer of late abortion and feticide. Results Fetal medicine specialists acknowledged the difficulties of ensuring that they worked within the law and within their own ethical frameworks when making decisions about offering terminations after viability. Practice regarding which abnormalities

meet the legal criteria appeared to be governed largely by consensus between colleagues within their own and other units and in discussion with other specialists. Study participants reported individual differences about abnormalities where they personally would not wish to be involved in a termination, and also noted a shift in general attitudes over time as to conditions that meet the legal criteria. A proscribed list was believed to be both unworkable, given the variability in diagnoses and unhelpful, leading to reduced patient care. Conclusions Research is needed to monitor attitudes to, and

interpretation of, UK abortion legislation, which permits termination after a late diagnosis of fetal abnormality without gestational limit. If attitudes are changing, it is important to understand why, and what the consequences will be for parents and for health professionals. Keywords Fetal abnormality, feticide, late termination, legal and

ethical framework, views of health progessionals.

Please cite this paper as: Statham H, Solomou W, Green J. Late termination of pregnancy: law, policy and decision making in four English fetal medicine units. BJOG 2006;113:1402–1411.

Introduction An item in Table 23, page 31 of the 2001 UK abortion statistics1 gave rise to a serious challenge to how UK abortion law is enacted. This identified two terminations carried out for ‘cleft lip and palate’, with one taking place at a gestation for more than 24 weeks. Joanna Jepson argued that this abnormality did not meet the criterion of ‘a substantial risk of serious handicap’ for legal abortion at that gestation. The local police were asked to investigate, with a view to taking legal proceedings against the doctors who had performed the abortion. When police found no grounds to support the contention that the law had been broken and declined to prosecute, Jepson sought and was granted (on appeal, December 2003)

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a Judicial Review of this decision, which was extended to investigate whether UK abortion law breached European Human Rights legislation. Before the Judicial Review, the police undertook further investigations: their findings were passed to the Crown Prosecution Service who decided in March 2005 that they would not prosecute the two doctors. For over two and a half years, this case generated extensive media interest in the UK and overseas (reports listed at http://www.jjepson.org/links.php, accessed 20 July 2006) and focused attention on UK legislation, doctors who interpret that law and women making decisions after prenatal diagnosis of fetal abnormality. In spite of the publicity, it was clear that both the public and health professionals not directly involved in late diagnoses of abnormalities remained ill informed2.

ª 2006 The Authors Journal compilation ª RCOG 2006 BJOG An International Journal of Obstetrics and Gynaecology

Law, policy and decision making about late abortion

In an extended introduction, we will summarise the current abortion law in the UK (see also recent comprehensive British Medical Association [BMA]3), existing guidance about the law for professionals from the Royal College of Obstetrics and Gynaecology (also discussed by Williams4) and the nature and extent of the ‘problem’ of late abortions as disclosed in National Statistics. We will then go on to present data collected from professionals working in fetal medicine to explore their perceptions of practice such that they work within both the law and their own ethical framework.

UK Abortion Law since 1991 UK abortion legislation (ground E) states that ‘A person shall not be guilty of an offence under the law relating to an abortion when a pregnancy is terminated by a registered medical practitioner if two registered medical practitioners are of an opinion formed in good faith that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped’. This legislation does not apply in Northern Ireland. Prior to the amendment of the 1967 Abortion Act by the Human Fertilisation and Embryology Act (HFEA) (1990), the law did not permit termination for any reason after viability had been reached. The Infant Life Preservation Act (1929) defined viability as 28 weeks, but a court judgement5 had effectively reduced that to 24 weeks. Under the HFEA amendment, that gestational limit of 24 weeks for terminations carried out for non-medical reasons was removed when the reason for the termination was a substantial risk of serious abnormality (and also in cases when the mother’s life was at risk). Thus, thirdtrimester terminations became legally available.

RCOG guidance A number of guidelines have been issued from the RCOG6–8 concerning how late terminations should be managed to be within the law.

The need for guidance arises because the law contains words and phrases that are not absolute, e.g. ‘of an opinion’, ‘formed in good faith’, ‘substantial risk’, ‘seriously handicapped’. Although for ground E, the law does not distinguish between before or after 24 weeks, there are additional considerations when a termination is offered at a time in pregnancy when the fetus could be born alive since a fetus born alive becomes a child, even if the birth resulted from a legal abortion. Any deliberate act causing the child’s death is a murder6. RCOG guidance is clear in its direction to ensure that fetuses are not born alive7,8 listing procedures that will ensure fetal death prior to termination if the fetus might be able to breathe if delivered. That time was first defined as gestations over ‘21 weeks’6 and modified later to ‘more than 21 weeks and 6 days’9. The College also made clear that a procedure that stops the fetal heart before delivery is ‘part of the legal abortion and is not murder’.6 Guidance around whether to perform a termination later in pregnancy is less clear. Two paradigms appear to guide thinking. Paintin10 wrote that if ‘. an abortion (i.e. one carried out under clause E) is ethical at 22 weeks, it can be argued that it remains ethical whenever in pregnancy the diagnosis is made’. The RCOG has stipulated, however, that ‘As the protection due (to the fetus) increases with embryonic development and fetal growth, reasons for termination, at no stage trivial, must be more pressing the longer the pregnancy has progressed’ stating that there must be ‘. a presumption in favour of life, not absolute but rebuttable for grave reason and the rebuttal becomes harder to establish as gestation progresses’.7

How many late abortions are there, and why? Few women terminate pregnancies under ground E of the Abortion Act. From 2000 to 2004, numbers have remained almost unchanged, both in absolute values and relative to the total number of terminations (see Table 1).1,11–14 The majority of terminations for abnormality take place before the end

Table 1. Gestational age for terminations carried out under ground E after prenatal diagnosis* Year

No. of total terminations

No. of ground E terminations

Ground E terminations as % of total

n (% ground E) 20 weeks

n (% ground E) >24 weeks

2000 2001 2002 2003 2004

175542 176364 175932 190660 194179

1833 1722 1894 1941 1894

1.04 0.98 1.08 1.02 0.98

267 (14.6) 290 (16.8) — — —

908 (49.5) 836 (48.5) — — —

658 (35.9) 596 (34.6) — — —

94 (5.1) 101 (5.9) 114 (6.0) 132 (6.8) 124 (6.5)

*Data taken from annual government statistics (ONS11; ONS1; DoH12; DoH13; DoH14). —, data unavailable. Source: National statistics website: www.statistics.gov.uk. Crown copyright material is reproduced with the permission of the Controller of HMSO.


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of the 19th week of pregnancy: of those terminated after 20 weeks (35% of the totals where data are provided in 2000 and 2001, Table 1), more than 80% took place before 24 weeks.3,15 Between 2000 and 2004, 94 to 132 terminations were performed annually beyond 24 weeks, 5.1–6.8% of all those for abnormality (Table 1). Table 2 (modified from Statham et al.15) shows that conditions that are more easily diagnosable appear more likely to be terminated before 24 weeks. For example, Down syndrome and anencephaly are usually easy to diagnose, and the majority of terminations take place before the third trimester. However, conditions which are harder to diagnose, more likely to need referral to fetal medicine specialists and may require more careful and prolonged monitoring, such as hydrocephalus and cardiovascular problems constitute a greater proportion of post-24-week terminations than of totals. Disorders related to growth and gestation are particularly few overall, less than 1%, but certainly in 2000 and 2001 constituted 7–8% of later terminations. Official statistics do not give the reasons why terminations take place late in pregnancy. In a UK study in 2001,17 these included decisions made after continuous monitoring of heart abnormalities or conditions with poor fetal growth to assess prognosis; late detection of a major brain anomaly at a scan undertaken because of concerns for the mother; waiting for selective termination on one twin with a lethal chromosome anomaly to allow the healthy twin the optimal chance of healthy survival.15 Thus, numbers of terminations carried out at 24 weeks or later are low, but although few in number, the issue had emerged as a source of professional concern even before the aforementioned media interest. At the time of the study we go on to report, the literature concerned with late termination was limited, e.g. personal accounts about emotional burdens18,19 and personal positions.20,21 The ethical debate was focused on the issue of the third-trimester fetus as patient.22,23 More recently, this has

encompassed debate as to whether a law that treats fetuses with abnormalities differently from those without is discriminatory.24 The only empirical research was the study of Green25 who identified confusion among obstetricians practising in district hospitals about the law as it stood in the UK; her study population did not include academic obstetricians working in fetal medicine. Studies by Williams in 2005 and 2006 have involved fetal medicine specialists in sensitive explorations of attitudes to fetal personhood, pain and the maternal–fetal relationship.4,26 There are no reported data concerning the experiences of health professionals working in fetal medicine within the legal framework and official guidance described above for England and Wales, although French health professionals have been reported to be positive about feticide.27 This article presents the findings of exploratory interviews carried out with doctors and midwives in four fetal medicine units (FMUs), which addressed practical, emotional and ethical questions around late termination of pregnancy for abnormality, including feticide.

Methods Recruitment of study participants Senior obstetricians in four fetal medicine units agreed to distribute information sheets about the study, and consent forms, to members of their department. Doctors and midwives who were willing to be interviewed returned the consent forms directly to the researchers. A request to interview the director of a national charity, which worked in the arena of prenatal diagnosis, was also made. The study was approved by the Cambridge Psychology Research Ethics Committee.

The interview Semistructured interviews were carried out between May and August 2000, with a small number early in 2001. The

Table 2. Proportions of terminations carried out for a range of conditions overall and after 24 weeks Year (n)*

2000 (1833) 2001 (1722) 2002 (1894) 2003 (1941) 2004 (1894)

DS

AN

HC

CV

GP

% of total

% of those >24 weeks

% of total


% of total

% of those >24 wks

% of total


% of total


19.0 20.1 20.2 20.7 22.1

5.0 11.0 6.14 ,7.6** 8.87

9.5 8.6 7.4 8.2 7.6

3.2 2.0 1.8 ,7.6** ,8**

2.3 2.6 1.8 2.8 2.8

18.1 4.0 8.0 ,7.6** ,8**

6.5 6.4 5.6 5.6 7.8

8.5 15.0 11.4 13.7 18.5

0.87 0.13 0.26 0.5 0.6

8.5 7.0 1.8 ,7.6** ,8**

DS, Down syndrome; AN, anencephaly; HC, hydrocephalus; CV, cardiovascular anomalies; GP, factors related to growth. *Total number of terminations carried out under ground E, sources of data as for Table 1. **Percentages given are maximum estimates because n no longer given where less than 10 because of confidentiality (ONS16).

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guide for these interview questions was formulated after discussions within the study team following completion of an earlier phase of the study, which involved parents’ reports of their experiences of late diagnosis. Interviews, which lasted approximately 45 minutes, but were often time limited because of clinical schedules, were tape recorded with consent, and transcribed. The topics discussed included: attitudes to termination in general and for abnormality specifically; unit policies around late termination and feticide; unit practice; training and support needs of staff; and the ethical implications and difficulties of this aspect of work in a fetal medicine unit. Study participants were encouraged to comment on any issue concerning late termination of pregnancy for fetal abnormality and interview guides were modified to take account of issues raised by early study participants.

Results Study participants Fifteen health professionals and the Charity director agreed to participate and were interviewed. Two further doctors agreed, but interviews could not be carried out within the study period. We do not know how many others were asked. Of the nine doctors (three women and six men) interviewed, three were subspecialty trainees (registrars) and six were consultants. The six midwives had a range of experience, with some in post for only a few months and others for a number of years. Their roles varied with some more involved in counselling and others in unit management. At least one midwife and two doctors were interviewed from each of the four units.

Attitudes to the current abortion law Analysis Transcripts were read by H.S. and W.S., and an initial coding frame developed with codes based on expansions of the topic areas of the interviews as described above and with other codes that reflected the range of issues that were raised by participants during interviews. Analysis sought to identify emergent themes within the data, with constant comparison of the interview transcripts.28 The qualitative software package ATLAS-TI was used to organise data.29 Findings were discussed between the study team. Because this study was the first of its kind, the aim was to explore and describe the attitudes and feelings within the group, rather than make any attempt at theory generation or quantification30 (p. 18). An unpublished report of the full study on which this article is based was sent to all the study participants. They were asked to comment on any issues including confidentiality, to confirm that they were satisfied with the range of views that had been presented and to consider if something important had been omitted or misrepresented30 (p. 45). No contributor to the study dissented from our interpretation and three made substantial helpful comments, which were incorporated into the report text.

Confidentiality The subject matter of these interviews is sensitive, and we are grateful that individuals were willing to be interviewed. Although the number of participants is small, the study group constitutes a large proportion of those working in the field since late terminations are generally the preserve of regional fetal medicine centres. To maintain anonymity, the fetal medicine centres are not identified. However, each is a major centre accredited for subspecialty training by the RCOG and staffed by at least two subspecialists. Quotations will be identified by hospital (01–04) and post (C, consultant; R, registrar; M, midwife; V, charity director).

Different gestational limits for terminating pregnancies where the baby had an abnormality were considered acceptable and necessary. A significant factor was the time needed to confirm a diagnosis: . someone’s had a diagnosis of a fetal abnormality, they don’t have much time to make up their minds. So that 24-week cut-off seems very unfair, just because they didn’t happen to get through the system, the system failed them. But I think for just a normal pregnancy, without any other problem, I think generally you want to move the decisionmaking to as early as possible. (02_R5)

Accepting that it was necessary did not mean that it was necessarily easy and professionals talked about their own ambivalence: . it is harder because you just think . especially the ones that are . not babies that would die in utero, but babies with problems, but not life-threatening ones . You think, if this baby was actually born today, it would live . I think from my perspective it’s harder, yes. (02_M3)

During the interview, we raised the issue that differential gestational limits are considered by some to be discriminatory against people with disabilities. Some participants recognised this inconsistency: And my view is still that if it’s OK, it should be OK whatever the gestation, whether the baby’s normal or abnormal. . I am slightly concerned that we have a double standard for babies that are not normal, and so I am still aggrieved by it, but I think that’s a real problem outside, in society and the culture. But actually if a woman comes to the decision that’s the right thing for her, that’s pretty much the thing you have to respect, because to make a woman carry on with a pregnancy that she doesn’t want is also a harm in itself. (01_C2)

However, as one respondent pointed out, the discrimination is not simply about the gestational cut-off:


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I think if you extend your argument, then you shouldn’t use fetal abnormality as an indicator for termination at all. And I agree that fetal abnormality is an indicator for termination. So therefore I must think that there is a difference between the two. (02_R5)

Given the complexities of the issues, however, for women, health professionals, society and the law, most individuals acknowledged inconsistency and ambivalence since participants could not adhere to either one of the dichotomies of consistency: All attitudes are inconsistent, other than that it’s always wrong, or it’s entirely the mother’s choice. There is no way that I can come up with really any consistent stance at all in between. (02_C1)

Professionals described advantages to working within a legal framework that allowed termination for abnormality without any gestational limit: ‘. we don’t pressurise them by (saying) you’ve got to make this decision by 24 weeks . we don’t place pressure on the woman’ (04_C4). The opportunity to delay a decision can give both parents and doctors more time to assess the state of a baby. One respondent (02_C1) referred to the ‘curtains that come down’ at a specific gestation in the USA, much of mainland Europe, Australia and Canada ‘whereas here they can wait and see what happens, they can take their time. Which I think is a better way’. Ventriculomegaly* was cited as an example of such a situation, where monitoring the prognosis could be important.31,32 Doctors talked of the advantages of delaying the timing of a termination, once a decision has been made, in the case of a twin pregnancy with one normal baby and the other with a serious abnormality: the risk of iatrogenic miscarriage, or complications of severe preterm delivery of the normal twin is removed if feticide of the affected twin is delayed until later in the pregnancy. If labour is initiated by the procedure, the pregnancy is at a sufficiently late gestational age that the healthy baby will survive. It was also suggested that the availability of late termination could enable women to be offered the option of late karyotyping if perceived risk of miscarriage was too high earlier in pregnancy.33,34

Working within the law At 24 weeks, the law changes such that after that time, termination is not permissible for non-medical reasons, i.e. those usually referred to as ‘social’ and few such terminations are carried out even near to this gestation.3,35–37 The duties of doctors to

*If mild ventriculomegaly progresses to moderate or severe, there is a much-increased chance of severe handicap while the possibility in mild ventriculomegaly is less. With no option to delay, an early decision might be made to terminate a ‘mild’ case for fear of it worsening.

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both women and fetuses appear to change more gradually, with the duties and protection due to the developing fetus increasing with gestation, and with advances in fetal, maternal and neonatal medicine.7 What follows therefore refers to abortions carried out late in the second and in the third trimesters. When abnormalities are diagnosed at such times, two decisions have to be made by doctors. First, they must decide whether or not to offer termination. They must also decide on the need for feticide as part of the process. Notwithstanding that these are separate decisions, some respondents used the term ‘feticide’ interchangeably with ‘late termination’.

Decisions about offering late termination In the early part of interviews, respondents had referred to women’s ‘rights’ to abortion, even though the UK Abortion Law does not give women ‘rights’ at any gestation. However, in the discussions of third-trimester terminations, professionals talked not about ‘rights’ but about the law: So there’s a law there . if a woman turns up with cleft lip at twenty-eight weeks, I do not think that fills the criteria of the law. And even if that’s what she really, really, really wants, my hands are tied. (01_C2)

As well as having concerns about acting within the law and the risk of prosecution if they do not, another concern raised was that doctors might be liable to be sued for not offering a termination: . we can be prosecuted for doing one too liberally, and we can be sued for not doing one. So it’s a fair minefield. So that we stick to fairly rigid guidelines . after twenty-four weeks, it’s not up to the mother to insist or not. It’s up to us to decide whether it’s legal to offer it. (02_C1)

There was agreement that termination would be offered for lethal abnormalities. For other malformations, doctors need to be certain that, if challenged, the risk, and severity, of the handicap are in keeping with the legislation: .‘significant risk of serious abnormality’. Serious handicap, is the criteria that we have to fill. And I think the word ‘risk’ is extremely important, because it does include the possibility that we could be wrong. (04_C1)

Although this respondent rightly draws attention to these two elements, severity and likelihood, participants appeared more concerned with whether the condition met the ‘severity’ criterion and rarely referred to certainty of prognosis. Where there was uncertainty about whether or not an abnormality meets the criteria, there appeared to be levels of debate and consideration: one is for the doctor to define his or her personal position within professional guidelines and responsibilities. Another may be discussion with other colleagues within the unit or other fetal medicine units. At the same time, or subsequently, other specialists, particularly paediatricians and neonatologists may become involved in discussions.



The personal decision can sound very uncomplicated, e.g. ‘I would not do it if I felt uncomfortable with that patient And I would just say, look, I’m not prepared to do it, someone else can do it’. (02_R4). Some doctors defined conditions for which they individually would not offer late termination, e.g. cleft lip and achondroplasia. However, one person’s refusal can put pressure onto another doctor, either to authorise the procedure or to reconsider that their own personal practice is not necessarily supported by the broader consensus of peer opinion: . But when we’ve declined, we’ve specifically mentioned to the women that there is the possibility that other units might accept. Now, that is a very delicate issue . basically if I and my consultant colleague here consider the issue and say, no, it’s not legal, that puts any other unit in the country under extraordinary difficult pressure if they’re challenged and they decide to do it. So I’m not aware of a termination that we have refused to do being done in another unit in this country. (04_C1)

Between those conditions where doctors are certain they would not offer post-24-week termination and those lethal conditions, such as anencephaly, where they are sure they would, lie the majority where difficult decisions have to be made and it is then that doctors would often discuss the situation with others. Discussions with colleagues within the unit are usual but the amount of discussions between units varies:

This perspective on Down syndrome was not held by those study participants who subscribed to the position described previously by Paintin10 that an abortion ethical at 22 weeks (under ground E) remains ethical whenever in pregnancy the diagnosis is made: Anybody with Down’s Syndrome, I’m happy to do a feticide. For the simple reason that, I don’t believe that we should terminate all the Downs Syndrome, on the contrary, but we offer prenatal diagnosis . so when Down’s is discovered I think the least you can do is to offer them feticide (i.e. late termination) if they want to. (03_C3)

In each of the four units, at least one doctor observed/ suggested that attitudes to terminating pregnancies for Down syndrome and for other conditions such as achondroplasia were changing: I think the big thing will come with Down’s. Whereas people used to say, yes, Down’s is a permanent condition, you can have a termination after twenty-four weeks. {There’s} lots of people now who say, well, maybe not . I think there’s a climate change in society generally against them. (01_R3) . the controversial ones for late termination are achondroplasia and [unclear condition] and probably in the early to mid-1990s, most [unclear] would have said they satisfied Clause E. And in my opinion probably now there’s a feeling that they wouldn’t. (02_C1)

.because we have a weekly meeting, where we discuss ten or twenty different fetal problems every week, one of the pivotal issues in management is, is this a condition that would justify an offer of termination under Clause E? So most people working here will be very familiar with that question, and how the jury would be likely to hang, and so often wouldn’t need to get any specific guidance, because it often comes up for discussion. (02_C1)

The charity, which has an overview of what is happening in units all around the country, confirmed this observation:

. we’ve got two consultants here, and they would always discuss something that was post-twenty-four weeks between themselves. And we have referred to other units elsewhere if we felt. we really had difficulty agreeing to something. (01_R3)

For achondroplasia, the changes appear to have been absolute, i.e. the condition is not deemed to meet the criteria for termination after 24 weeks, whereas previously it would have and even though similarly affected pregnancies will be terminated under clause E earlier in pregnancy.

Neonatologists and paediatricians also become involved, ensuring that parents fully understand the implications for the child and assisting the fetal medicine specialists with assessing severity. One input to decision making is to consider what the neonatologist would do if the baby were born: I would feel a little unhappy about doing a late termination if it was for a condition which the neonatologist would go all out to treat after delivery. So, for instance, a baby with Downs Syndrome with a simple VSD . On the other hand a baby with a very large spina bifida with hydrocephalus associated with it, they would obviously provide supportive treatment postnatally, but not much more, and they would have a very low threshold for withdrawing treatment from that child if it got infected for instance. There I think it is . a late termination is a distinct possibility. (03_C1)

The change where I’m obviously noticing it is achondroplasia . we’ve had a number of people who’ve come to us with late diagnosis for achondroplasia which I know 4 or 5 years ago they probably would have been able to get a termination of pregnancy. (V1)

Would a list make decision making easier? Given these uncertainties, we asked participants if it would be helpful to have a list of conditions for which post-24-week termination would be legal as suggested by Savulescu.38 As shown in Table 3, a list was seen to have an overwhelming disadvantage: individual diagnoses need individual decisions (Table 3, panel a). All conditions can be variable, e.g. facial clefts: some participants specifically referred to cleft lip as off their personal list, but cleft palate as potentially causing significant long-term problems. Down syndrome continued to be raised as a dilemma (Table 3, panel b)—a condition where a list might be helpful, but where the need for the individual diagnosis was essential. Another important disadvantage of a list was the potential for a reduction of care for parents that


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Table 3. Would a list make decision making easier? (a) A list—is it possible? I think the fact that you can leave it up—the interpretation of substantial problems or handicap is—it can be very broad. And I don’t know how you can tighten it up, to be honest . . I think it could be an area where further discussion should take place, but I don’t know how, without being too prescriptive really, and I think that would be the opposite problem. (02_M2) (b) A list—does Down syndrome define the dilemma? No, I think some things [on a list] would be helpful. For example, if somebody was prepared to say that Down’s syndrome was an indication of termination after twenty-four weeks, that would be enormously helpful . And then again, for example, the cardiologists. If you say to them, ah well, it’s got this cardiac lesion and Down’s, they may say to us, but if it didn’t have Down’s the cardiac lesion is repairable. So you shouldn’t take that into account in deciding if you will terminate this baby after twenty-four weeks. If you don’t terminate for either alone, you shouldn’t terminate for the combination. And so I think guidance like that would be practically very helpful. (01_R3) I certainly couldn’t do a list, an exclusive list, I certainly couldn’t. Because every case is different. I mean if you just take the issue of Down’s syndrome for a moment . you could have Down’s syndrome with a major heart defect, with massive hydrops fetalis, it could be a completely lethal condition in one case, with a good prognosis in another. So no, you can’t have—because there is so much variability with the conditions, they couldn’t. But you could perhaps produce a list of examples . put into the public domain the type of practice that we are undertaking. But I think it would have to be an example rather than . the most difficult area of all are physical abnormalities where intellect would be normal . I wouldn’t really like a list. (04_C1) (c) A list—will parents get less good care? . it would divorce you from an awful lot of responsibilities, I suppose, one could say, it’s on the list or it’s not on the list. I’m not sure that . anyone’s capable of writing that list. And I think that taking the trouble to get real expert opinions from good people who deal with babies with those sort of problems, who can tell the parents what—tell us what handicap that really means, whether it means, being fed, being changed, will they have any independent activity or not—all those sort of things. I think that is a more sophisticated approach, rather than just having a list. I think it’s also better for our own education, and it’s better for the parents’ counselling. So I think just saying, you’re on the list, you’re off the list . could result in a real lower standard of care for the parents. I think having a team approach, and as many expert opinions as you need in a big centre, is a better approach. (02_R5) (d) A list—is one evolving by consensus? . In general, if both our fetal medicine consultants agreed, after twenty-four weeks, I think that would be fine. If the fetal cardiologists agree, one of them agrees and one of us agrees, that would be fine. We rarely come to the situation where we don’t actually agree . then we have referred to other units, yes. I: So again the consensus arises {unclear} there isn’t a written list? R: Yes, that’s right. Generally because the consensus comes down to, yes, we’ll do it, which is what the parents want. I think if - and I think the way things are going, is that there’s a sort of climate change away from post-twenty-four weeks terminations. That’s my perception. (01_R3) I think the last thing we need is any kind of listing, I’m completely opposed to lists for late terminations . but a kind of unspoken list is beginning to develop, even if it’s not a list, it’s just areas of anxiety and areas of uncertainty and areas of no-go, and I think we need to look at why those areas are developing, is it because the professionals don’t want to do it, they don’t feel confident or comfortable doing it . their moral views, which is a principled view, or is it because there’s a kind of undercurrent of fear, and the fear is about litigation . why could we do something 5 years ago that we can’t do now? And I can accept it completely if . I respect anybody’s right not to do something, but I don’t think it’s fair to parents if no one will do it, because we’re talking about such a tiny number of parents and rare incidents, those parents who are given a late diagnosis which is usually made because the condition only manifests itself late, or there needed to be monitoring or something’s been missed at other scanning . (V1)

might follow from a blunt ‘you’re on, you’re not’ approach to this very difficult area (Table 3, panel c). In the absence of a definitive list, other specialists (such as paediatricians, cardiologists) are more likely to have input to decision making, which is seen as helpful to both parents and staff working in the FMUs. Overall, formal lists were not seen as a satisfactory solution, whereas ‘guidance’ might be welcomed. A list could provide an indication of acceptability, which would give the practitioner the security of knowing they were acting within a framework accepted by peers. It could, however, act as a pressure for doctors to adhere to that list. The need for professionals to show similar decision making appeared to be leading to a list via consensus rather than via a transparent mechanism, a point raised particularly by the voluntary sector

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who queried why more concerns were raised than in the past, while the law has not changed (d).

Decisions about feticide Participants were clear that the purpose of feticide is to ensure that the baby is not born alive. Staying within the law was the overriding consideration. Twenty-two weeks was the usual gestation at which feticide would be offered and/or recommended. Failure to carry out feticide leading up to 24 weeks was considered ‘very dangerous indeed’ by one participant (04_C1), but others were more flexible, talking about ‘grey areas’ especially if the abnormality ‘was of sufficient gravity or the fetus was so growth retarded that death during delivery was absolutely inevitable, then I wouldn’t do it’. (03_C1).



This grey area flexibility decreases as the pregnancy progresses because the time taken to die may be longer at later gestations. Respondents raised additional considerations including the legal status of the baby at the time of the delivery, the implications for delivery staff and parents who wanted to avoid feticide: I mean I would personally be happy with [not doing feticide], as long as the mother realised that sometimes these babies don’t die immediately, and it may take a little bit of time, and it may be quite difficult for them to put it behind them, for example, if they know that this baby has been in the neonatal unit. So long as they appreciated that, then I wouldn’t have any problem. (02_R4)

Although not all held that view: . although I totally conceive that [feticide] is an extremely distressing thing to go through, so is having a termination at 24 weeks, and if they were willing to do one without the other I would be concerned I think that they hadn’t actually thought through the consequences of what they were doing. (03_C1)

Even when a baby is certain to die because of the condition, doctors perceived that it could be more difficult for midwives who would be delivering the baby after a termination if that baby were born alive: I would not insist, I would just inform them of the risk that the baby will be born live, . that they’re putting the staff who are going to look after them in terrible situations if the baby is born alive. (03_C3)

Midwives concurred that this could be difficult on delivery units. However, the question was raised by one participant in feedback on the report on which this article is based on whether feticide was really necessary for those babies who, without the procedure, would be born with the ‘sign of life’ that was just a fading heartbeat. This previously might have been seen as a ‘sign of death’, but allowing a baby to ‘die’ may be less possible in a climate of opinion that sees coroners, inquests into neonatal deaths after terminations.39

Discussion We are fully aware of the limitations of the data reported here, being based only on interviews with 16 individuals in four units. We believe, however, that the unique data represent an important contribution to discussion and debate about one of the most sensitive areas of obstetrics: termination of pregnancies after viability, an event that is not frequent in the UK, but which arouses many passions and calls for a change in the law.2 There were clearly two issues that doctors considered when deciding whether or not to offer a termination of pregnancy under ground E of current abortion legislation in the late second and third trimester. First, did the condition meet the requirement for a ground E termination; secondly, should

a feticide be undertaken prior to induction of labour. Decisions about feticide appeared mostly to have been made with reference to official and specific guidance,6–8 after the decision about the offer of a termination. A number of factors appear to influence these difficult decisions for doctors working within the fetal medicine clinic including their personal perspective, professional guidance and institutional structure. Billig et al.40 point out that when individuals face a dilemma, i.e. making a difficult decision, then for each of the relevant decisional influences, individual decision makers will be aware of a variety of contrary themes, in this case the conflicts around perceptions of responsibility to the mother and fetus,4,7,10,22,23 fetal viability,3,26 personal and professional accountability,7,19,20 and beliefs about the legal framework.7,10,25 Thus, different doctors make different decisions, some holding views about abnormalities where they personally would not wish to be involved in a termination, while accepting that it may be acceptable within the law, putting them at odds with the recent suggestion by Savulescu41 that doctors’ consciences should not be allowed to interfere with medical care that is legal. Because the law relating to late terminations for abnormality is not specific, practice regarding which abnormalities meet the legal criteria for the offer of termination in the third trimester appeared to be governed largely by consensus between other colleagues within the unit or with other fetal medicine units and in discussion with other specialists, particularly paediatricians and neonatologists. That this might emerge as a formalised list caused some concern if it meant that doctors were not able to give appropriate and compassionate care to women. Within the study, professionals were willing to express their ambivalence about these difficult areas. They were immensely thoughtful about what they do and the possible implications. We would suggest that it may be this sensitivity, their ability to recognise risks and to allow themselves to face up to their feelings, including ambivalence about what they are doing that ultimately enables these individuals to feel comfortable with this difficult aspect of their work. Kero and Lalos42 have explored ambivalence in women and men after termination for non-medical reasons, and have suggested that such ambivalence might not be problematic, as often presumed. It may indicate openness to the complexity of the issues when facing the dilemma of balancing incompatible values around social responsibilities and ethical perspectives.40 We would suggest that the ambivalence expressed by the health professionals within this study serves a similar purpose: these are individuals who have to balance their own sense of personal and social responsibility, their ethical perspectives and the duties of their chosen profession to women and unborn babies, within a legal framework that is not precise. Some study participants reported that they believed that attitudes to late terminations had changed and that women might not now be offered termination for some conditions for which


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termination might have been available a few years ago. Achondroplasia was one such condition, and it was perceived that attitudes to late termination of Down syndrome pregnancies might also be changing. There is no formal list of conditions where termination is permissible post-24-weeks and there were perceived to be few advantages in such a list. However, even in the absence of a formal list, one may be emerging as a result of individuals’ concerns and discussions with other units. If one unit will not undertake a termination that another unit has refused to do, and if that is because of legal concerns rather than a personal point of view, then an informal consensus may become a rigid code. In spite of this, individuals sometimes referred to perceiving their own or other units as ‘liberal’ or ‘conservative’ in their decision making and policies. We perceived little variation in what we were told by members of different units that was unit related as opposed to person related. Individuals were clear that there were some conditions that they did not feel justified a late termination, and were comfortable in telling parents this and referring to other practitioners. It was unclear why some clinicians perceived that attitudes might have been changing although the charity queried whether fear of litigation was one possible explanation. There is an extensive literature on the moral status of the embryo and fetus, as discussed by English3 in 2005, that charts views of personhood as beginning somewhere between the fertilised egg and a newly born baby. In her empirical study conducted since the study reported here, Williams4 has identified a subtle shift in attitudes towards the fetus as a patient in its own right, even though in UK law the fetus has no rights. She suggests that this may be because of the increasing availability of fetal surgery, the increasing detection of conditions for which treatment is an option and the increasing debate about the possibility of fetal pain.43 These may have since become important issues for the professionals in our study, but surgery was not discussed and a word search of our interviews showed that pain was mentioned in only two contexts: women’s painful decisions and parents’ perceptions of feticide as a means to end pain. However, if attitudes were changing 6 years ago, it is likely that recent events in the UK would have compounded that change. Yet, as seen in Table 1, there is no evidence of a decrease in absolute numbers or proportions since that time. What Office for National Statistics figures do not show, however, is whether there are women who might have wanted a termination, but who were not offered it in circumstances where it might have been previously available.

Conclusion The media and legal debates described in the introduction have given rise to calls that gestational limits for abortion should be reconsidered, and we would hypothesise that in the current climate, there may be additional constraints on decision making beyond what we observed, e.g. the establish-

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ment of clinical ethics committees in some hospitals and the report that coroners might intervene after terminations.39 Calls for clarification of the law38 may sound appealing but would result in a list. A proscribed list would have serious implications for doctors given that the current law defers entirely to doctors’ opinions44 (p. 78) formed in the knowledge that they must be accountable to the law. Any change would have implications for parents, and a charity working in the area reported shifts in practice even without changes in the law. Open discussion of this sensitive topic is important with further research to monitor attitudes and to understand, if they are changing, why and what the consequences are for parents and for health professionals. This may be particularly important in the context of Down syndrome, a common condition with a national UK screening programme that can identify most fetuses with an additional chromosome, but where diagnosis cannot be accompanied by prognosis and where individuals (public and professionals) hold a variety of conceptualisations of the condition.45

Acknowledgements This study was funded by a grant from the NHS (R&D) Mother and Child Health Initiative. We are very grateful to the cograntholders; to all who were willing to talk to us on this sensitive topic; and to all those who contributed to the study in other ways.

Author statement H.S. is a trustee of Antenatal Results and Choices. j

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