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Report on ‘FFA’ released

The report of the working group on fatal fetal abnormality was released in April. This is quite a lengthy and detailed report. In what follows we will go through some of the major topics in the report which come across as both problematic and not properly reasoned.

Just to be clear on the legal situation, the law in NI is that it is lawful to perform an operation in Northern Ireland for the termination of a pregnancy, where: (i) it is necessary to preserve the life of a woman; or (ii) there is a risk of real and serious adverse effect on her physical or mental health, which is either long term or permanent. The document proposes a change or amendment to the law in some so as to allow for termination when there has been a diagnosis of what the authors of the report term a fatal fetal abnormality. There are a number of problems and inconsistencies with this report which I have gathered under four headings: (i) representation, (ii) terminology, (iii) healthcare, (iv) moral. Highlighting these problems ought not to be taken as undermining the good work of focusing on how we as a society care for women faced with a diagnosis of a serious abnormality or indeed for the child suffering from that condition, and indeed how we as a society can respect the lives of both.

Representation

This report was authored by a working group, not by an expert group. Evidence was taken from experts, but no relevant experts made up members of the group. In addition to that, other than the legal judgements cited which clarify the exact nature of the law in NI, there is no documentary evidence cited for any of the claims made in the document, yet the authors of the document make a number of fundamental claims about healthcare throughout.

The views of healthcare professionals are given throughout the document as if this is the joined up approach of all those involved in healthcare. However, when we look at the representation of healthcare professionals we notice that they are represented mainly by their royal colleges. Not only that, such representation by the royal colleges cannot be taken as blanket representation of healthcare workers, as for instance the Royal College of Obstetricians and Gynaecologists has recently backed full decriminalisation of abortion, and so as a body they do not represent the views of healthcare workers who do not endorse such a position.

Furthermore, only three women who had experience of the sorts of conditions treated under the heading of fatal fetal abnormality were engaged.

Despite this the authors of the document claim to speak with authority for the majority of healthcare professionals, despite only having representation from the royal colleges. Not only that, they make claims about what is best for women facing such situations having consulted only three of them.

On a more general point, the authors of the document do not take into consideration the views of the wider public on the issue, views of spouses, parents, children, relatives etc of women who are pregnant with children suffering from a serious abnormality. The authors do note the 25,140 people who registered opposition to change in the law in NI, but dismissed such opposition in favour of the select expertise of representatives of the royal colleges (biased in favour of abortion in the case of the RCOG) and the three women who had experience of the diagnoses under consideration.

Terminological

The report gives its endorsement to the term: fatal fetal abnormality and rejects that of life limiting condition. ‘n. 11: Fatal fetal abnormality is an acceptable description of a diagnosis made, usually around 20 weeks gestation, of a fetal abnormality which will result in death in utero, at birth or shortly after birth’. ‘4.22: Fatal fetal abnormality is a widely acceptable description of a diagnosis made, usually around 20 weeks gestation, of a fetal abnormality which will result in death in utero, at birth or shortly after birth. The term ‘life limiting conditions’, which has been used by some participants in the wider debate on abortion law, may include fatal fetal abnormalities but also includes other conditions which result in babies born with disabilities where life expectancy is not confined to the early period but where medical intervention is still confined to palliative care’.

The difference between life limiting condition and fatal fetal abnormality in the view of the authors of the report is the viability of the child should the child be born. There are three problems with the view of the authors in this respect.

  • It is plainly inconsistent with what they say in their own report. N. 11 quoted above states that a fatal fetal abnormality is one which ‘…will result in death in utero, at birth or shortly after birth’, however n. 13 in referring to such abnormalities as grounds for changing the law states: ‘…where the abnormality is of such a nature as to be likely to cause death…’. The inconsistency here is clear. On the one hand an FFA is one that will cause death, whereas when offered as grounds for changing the law it is one that is only likely to cause death. Given this report then, it is unclear which definition the authors prefer. If they prefer the first such that an FFA is one that will cause death, then there must be certainty in diagnostic tools in order to ascertain this (and not just good old experience); but if it is an abnormality only likely to cause death, then the threshold of likeliness must be set for determining this, and the authors offer no criteria for the determination of likeliness. This brings us to the second problem with this definition.
  • The authors form their definition of FFA on the basis of diagnoses made around 20 weeks gestation as describing particular conditions in the development of the child which will result in the child’s death. We have already noted in the previous point the problem over the certitude involved in this definition. But here we wish to focus on the fact that this definition is arbitrary. It does not cite any academic or legal literature on the subject to justify its definition, in which case it is simply a definition made on the experience of those consulted in the authoring of the report, i.e. on the basis of the representatives of the royal colleges, and therefore amounts to nothing more than an arbitrary definition, one certainly not fit to function in any process of legislative change.
  • The authors’ definition rejects ‘life limiting condition’ because it sees the latter as including children who do not have a condition deemed fatal, whereas FFA is deemed appropriate because the conditions involved therein are deemed fatal. But we have already noted that this definition is confused over whether the condition will cause death or is likely to cause death, and the authors of the report do not clarify this issue. Not only that, as noted in the previous point this is an arbitrary definition, in which case there are no good grounds for distinguishing FFA from life limiting condition. In light of this it could seem, especially given the authors’ recommendation at the end of the document, that FFA is preferred instead of life limiting condition because the latter places children suffering from what the authors take to be FFA in the same context as severely disabled children, in which case advocation for a change in abortion law to allow for terminations of children with what the authors call FFA could also be used to justify termination of severely disabled children – and it is assumed that this is what the authors do not want, in which case we have this arbitrary definition..

Healthcare

A significant portion of the report is devoted to explaining how healthcare professionals, in the estimation of the royal colleges representative to the group, cannot meet their duty of care for women who have had a diagnosis at 20 weeks gestation. One of the justifications for a change in the law to allow for termination of children suffering from what the authors call FFA is that it will allow healthcare professionals to discharge their duty of care. However, there are two problems with this outlook.

  • The law in NI, alluded to a number of times by the authors of the report, clearly allows from the termination of pregnancies where such termination is necessary to preserve the life of the woman or there is a risk of real and serious adverse effect on her physical and mental health which effect would be long term or permanent. The law in NI then does have a view to the health of the woman involved, but at the same time respects the life of the unborn so that its life cannot be taken if the threat to the woman’s physical or mental health is only short term or not serious. Any justification for abortion in circumstances where the woman’s life is not at risk and where there is only short term non-permanent threat to physical and mental health comes at the cost of denying the right to life of the unborn.
  • A number of issues are highlighted pertaining to the poor treatment of women including communication, information, support, lack of humanity/compassion in care etc. These failings in care for women were seen to apply just as much to women who chose to terminate their pregnancy elsewhere as to those who did not. Given the latter, it is not the case that introduction of abortion would alleviate this situation, since the failings apply both to those seeking and those not seeking a termination, in which case the solution is for a better system of care, and not the introduction of abortion which introduction would suffer from the same failings in the care system as we have now.

Moral

The authors of the report make very clear that they are not considering moral arguments relating to termination of pregnancy, but to consider the provision of health and social care for mothers (n. 5.17). However this is inconsistent with the entire report for three reasons.

  • The report itself is engaged in moral decision making, for throughout it highlights the duty of care of healthcare professionals towards women. It thus envisages the discharge of this duty of care as a serious choiceworthy action, one that merits detailed attention given in the report, and one any failings of which would be considered seriously problematic thereby calling for a change in the law over abortion. Hence this is not an exercise in health and social care provision, which incidentally also pertain to moral decision making, but an exercise in what is the right thing to do for healthcare professionals.
  • Throughout the report the right to life and health of the mother is consistently focussed on and recognised. These rights are taken by the authors of the report as being somewhat basic and self-evident, and hence as goods that healthcare professionals ought to pursue. Given the latter, a moral judgement is made by the authors on what the goods are in this case, in which case they are involved in moral argumentation and decision making concerning abortion.
  • At no point in the whole document is the right to life of the child discussed, whether to dispute it or to affirm it, and this in contrast to the rights and goods of the mother (noted above)) and the legal position in NI which respects the right to life of the child. Such a practiced omission of any sort of discussion of the right to life of the child signifies a moral decision as to the goods that the authors of the report seek to pursue. And indeed failure to consider the right to life of the child leads the authors of the report to make recommendations inconsistent with that right.

Conclusion

It is right and just that focus in placed on the care we offer to parents in a situation where a diagnosis of a serious abnormality has been made. This focus ought to make recommendations on the analysis of failings within the system as we have it. But such recommendations cannot extend to a denial of the right to life of the unborn; for once the right to life of human beings has been denied, healthcare ceases to be healthcare. The authors of this report have missed this crucial point, and along with the problems outlined above, they have advocated for a change in the law based on ill thought out and thoroughly irrational grounds. Accordingly, we must preserve what is good in the report: highlighting the failings in care and seeking improvement, without in turn going so far as that we seek to deny the right to life of all those within our care.