One of the fiercest sub-debates within the broader abortion discussion in Ireland is the use of the phrase ‘fatal foetal abnormality’. The pro-life side argue that this is not a medical term and that it is misleading and obscurant (see here, here and here for starters).
Those in favour of abortion argue the opposite. On 6 July 2016, the Abortion Rights Campaign website published the following:
A search of the Wiley Online Library (a database of academic resources available online) for the term “fatal foetal abnormality” produces 2649 results. Searching for the American spelling “fatal fetal abnormality” produces 9513 results: over a thousand books, over eight thousand articles and 45 different Cochrane reviews covering over 100 research articles involving over a million women use the term “fatal foetal abnormality”. It is a medical term.
It’s not the only point the article, which raises many interesting topics from a pro-life perspective, makes, but it is a powerful one. How can opponents of abortion refuse to acknowledge overwhelming medical consensus? On 28 June 2017, we made the same search they did on Wiley Online Library.As of that date, a search for ‘fatal fetal abnormality’ yielded 10,009 results, which included 8,345 journals, 1,188 books and 411 reference works. ‘Fatal foetal abnormality’ brought back 2,731 results. So far, the Abortion Rights Campaign appears entirely correct.
However, the Abortion Rights Campaign made a fairly basic error in this search. If I do an online search for results for
fatal fetal abnormality
and I type it just like that, no punctuation, no Boolean search operators, I will get results for every page that contains the words ‘fatal’ and ‘fetal’ and ‘abnormality’. The words need not be linked. They need not be relevant. They need not form the phrase ‘fatal fetal abnormality’. And in fact, because of the peculiarities of Wiley Online Library, the words need not even be present for a result to be returned as including them. The very first result that Wiley gives us for that search (on my computer, at least) is an abstract: Huisman, ‘Diagnostic Management in Patients with Clinically Suspected Pulmonary Embolism with Clinical Decision Rule, Quantitative D-Dimer Test and Helical Computed Tomography—The Christopher Study’ (2005) 3(1) Journal of Thrombosis and Haemostasis. The only word that came back here was ‘abnormality’. The abstract does not mention ‘fatal’ or ‘foetal’ once. Taking another article at random (FM Habal and VW Huang, ‘Review article: a decision-macing algorithm for the management of pregnancy in the inflammatory bowel disease patient’ (2012) 35 (5) Alimentary Pharmacology and Therapeutics), we see ‘fatal’ appear in footnote 106, citing the title of another article (Cheent et al., ‘Case report: fatal case of disseminated BCG infection in an infant born to a mother taking infliximab for Crohn’s disease’ (2010) 4 J Crohns Colitis). ‘Foetal’ crops up 24 times, but never in combination with ‘fatal’. ‘Abnormality’ or ‘abnormalities’ appear eleven times. Again, this is never in the sense of ‘fatal foetal abnormality’. Even a brief scan of the returned results should reveal that some of them should never be used as evidence in the abortion debate. It’s unclear, for example, what Neil Sargison’s article ‘The Lambing Percentage’, published in the book Sheep Flock Health: A Planned Approach has to offer to the pro-choice cause.
It’s by using a very simple search tool that we get the real picture of how often ‘fatal foetal abnormality’ is used on Wiley, and that tool is the quotation mark. As one website puts it, ‘When you use quotation marks around a phrase, you are telling the search engine to only bring back pages that include these search terms exactly how you typed them in order, proximity, etc’ . This isn’t a pro-life trick or a crafty legalistic loophole: it’s a well-known method of filtering out irrelevant results on the Internet. And if we search for the phrase ‘fatal foetal abnormality’ or ‘fatal fetal abnormality’, and not the individual words, like this:
“fatal fetal abnormality”
“fatal foetal abnormality”
how many results does Wiley throw back?
For the American spelling (fetal), we get fourteen results.
And the European spelling (foetal)?
Search results on Wiley Online Library, 28 June 2017.
Altogether, then, across the whole of the Wiley Online Library, only fifteen sources use the phrase ‘fatal fetal/foetal abnormality’. Six of those are not open-access, so it’s not possible for us to check precisely how the phrase is used. However, examining those sources we can access, not even all those sources can be included as using the phrase as a medical term. Three of the fifteen don’t use the phrase at all; it appears only in the footnotes, when they cite the title of a 1981 study (Kirkinen et al., ‘Clinical features of pregnancies with fatal foetal abnormalities’ (1981) 19(5) International Journal of Gynecology and Obstetrics).* That leaves us with twelve results. One of those is a subject index which actually refers to ‘non-fatal foetal abnormalities’ (Porter and O’Connor, ‘CIBA Foundation Symposium 115—Abortion: Medical Progress and Social Implications’). So we’re down to eleven. Two results present the exact same study (Meaney et al., ‘The death of one twin during the perinatal period: a qualitative study’ cited in (2016) 123(S1) BJOG and (2015) 131(S5) International Journal of Gynecology and Obstetrics), which cuts it to ten. This could probably be narrowed down even further, given that three of the closed-access articles have the same author (Kirkinen), making it likely that they reference his past paper which uses the phrase in the title, but we can’t be certain. What we can be certain is that, of the hundreds of thousands of academic resources on Wiley Library Online, only ten actually use the phrase ‘fatal foetal abnormality’. Another point worth noting is the peculiarly Irish influence among these results. Of the nine open-access articles that use ‘fatal foetal/fetal abnormality’, four come from Irish authors or deal exclusively with Ireland.** Of course, this doesn’t negate the value of the term, but it does reflect the particular obsession we Irish have with this phrase, an obsession that the vast majority of the English-speaking scientific and medical world do not share.
But if even a handful of academic papers use the phrase, doesn’t that say something? Doesn’t that say that, really, the phrase is a medical one, just not a widely-used one? Well, if we search Wiley for the phrase ‘funny feeling’ (in quotation marks, of course), we get 232 results. So ‘fatal foetal abnormality’ is less a medical term than ‘funny feeling’. And ‘funny feeling’, although I’m not a doctor, doesn’t sound all that medical to me. And if we search for a truly accepted medical term, like ‘actinic keratosis’ (spots caused by overexposure to the sun) or ‘scleral buckling’ (surgical technique to reattach the retina), we get a lot more results—3,956 and 602 respectively. Recognised medical terms are used by the recognised medical community. If ‘fatal foetal abnormality’ was a widely-recognised medical term, it would be widely used. It’s as simple as that.
But can we really judge the value of a phrase simply by the amount of times it’s used in academic literature? I have no idea, but that’s how the Abortion Rights Campaign justify their calling the phrase ‘fatal foetal abnormality’ a medical term. And once a minor amount of investigation is done, once the correct search tools are applied, that falls apart rapidly and dramatically. This is why it’s important to keep opposing the use of ‘fatal foetal abnormality’ as a medical-like term. A term like ‘life-limiting condition’ is less partisan, kinder and far more reflective of current medical language (483 results on Wiley). This is what the online outreach organisation Every Life Counts recommends (see also the support group One Day More, another fantastic group of people campaigning for perinatal hospice care, among other things). It’s worthwhile checking out Wilkinson et al., ‘Fatally flawed? A review and ethical analysis of lethal congenital malformations’ (2012) 119(11) BJOG: An International Journal of Obstetrics and Gynaecology, which argues that terms like ‘fatal foetal abnormalities’ should be avoided because it hinders clear communication and counselling. They also prefer ‘life-limiting’. One particular passage from a different paper from the same authors on the same topic is telling (Wilkinson et al., ‘Ethical language and decision-making for prenatally diagnosed lethal malformations’ (2014) 19(5) Seminars in Fetal and Neonatal Medicine).
Why does it matter if these conditions are described as lethal? The first reason to be concerned about this terminology is its potential for misunderstanding and miscommunication. We surveyed more than 1000 obstetricians from the UK, Australia, and New Zealand about the perinatal management of T18. The overwhelming majority (85%) of obstetricians regarded T18 as a lethal malformation. More than 50% regarded T18 as ‘incompatible with life’. We did not ask obstetricians whether they would use these terms in counseling, but a survey of parents from T13/T18 support groups found that 93% had been told by health professionals that their child’s condition was ‘lethal or incompatible with life’. This contrasts with the evidence summarized above, and with obstetricians’ own understanding about survival. Three-quarters of respondents estimated that at least 5% of affected infants would survive for more than one year if treatment were provided.
Qualitative studies and narratives from parents of infants with T13 or T18 describe feelings of anger and disillusionment and a sense of being misled by health professionals as well as by the language used. Many parents reported that health care providers were unable to look beyond adverse statistics. Furthermore, the Internet has provided families with the ability to do their own research and encounter alternate perspectives on their child’s condition. Within seconds of searching for ‘trisomy 18’ a parent may see pictures of many older children with trisomy 18, smiling and happy, strong evidence against ‘incompatibility with life’. If they have been told by their doctor that trisomy 18 is always lethal, there may be repercussions for the family’s ongoing capacity to trust health professionals.
Another reason to be concerned about denoting a condition such as T18 as ‘lethal’ is because of a worry that this language contains concealed value judgments about the quality of life of surviving infants. Eighty percent of obstetricians in our survey believed that T18 was not compatible with a ‘meaningful life’. Labeling a condition as ‘lethal’ may also risk taking decision-making from the parents. In our survey, 23% of obstetricians would never discuss or offer fetal monitoring in labour for women after an antenatal diagnosis of T18, and 28% would never offer caesarean section for fetal distress. In the parent-support group study, two-thirds of parents reported feeling pressure to terminate their pregnancy.
This isn’t political correctness or language policing: people are free to go ahead and use whatever term makes them feel better, but they should be aware that ‘fatal foetal abnormality’ is just not rooted in any academic foundation and actually has adverse consequences. Choosing to ignore the evidence is their prerogative. The term doesn’t reflect academia. It doesn’t reflect medicine. It doesn’t reflect the truth. What it reflects is an attempted abduction of language to represent one viewpoint. In his 1946 essay ‘Politics and the English Language’, George Orwell argues that ‘if thought corrupts language, language can also corrupt thought’. This is precisely what happens with ‘fatal foetal abnormality’. To read it is to see only fatality and abnormality, and not the humanity that compels us to oppose the destruction of these vulnerable lives.***
The Statistics Fairy
*Muenke et al., ‘On Lumping and Splitting: A Fetus With Clinical Findings of the Oral-Facial-Digital Syndrome Type VI, the Hydrolethalus Syndrome and the Pallister-Hall Syndrome’ (1991) 41 American Journal of Genetics; Aughton and Cassidy, ‘Hydrolethalus Syndrome: Report of an Apparent Mild Case, Literature Review and Differential Diagnosis’ (1987) 27 American Journal of Genetics; Bijma et al., ‘Survival after non-aggressive obstetric management in cases of severe fatal anomalies: a retrospective study’ (2005) 112 BJOG: an International Journal of Obstetrics and Gynaecology
**Meaney, mentioned above and cited twice; Taylor, ‘Women’s right to health and Ireland’s abortion laws’ (2015) 130(1) International Journal of Gynecology and Obstetrics; Burrell and Griffiths, ‘Changes in the abortion legislation in Ireland: The Protection of Life During Pregnancy Act 2013’ (2017) 124(8) BJOG: An International Journal of Obstetrics and Gynaecology.
***For a discussion on the constitutional right to life of babies with life-limiting conditions, see Simons, ‘”Incompatible with Life”: Does Article 40.3.3º Permit Abortion for “Fatal Foetal Abnormality”‘ (2015) Medico-Legal Journal of Ireland.