Refusing Down’s screening
A woman successfully sued the NHS last month for not diagnosing and aborting her Down’s fetus after she had apparently declined screening (Mordel v Royal Berkshire NHS Trust, click here or 2591).
Background
Women considering Down’s screening need to know what they are getting into. Screening only gives a risk. If it’s high a needle test will confirm the diagnosis, but may cause miscarriage of a normal fetus. And the “treatment” is abortion. If you don’t want that, steer clear.
Midwives and sonographers must ensure that everyone who wants screening gets it, but avoid normalising it, or offering it in such a way that women get pressured into acceptance. It’s easy for compliant, or confused women to get sucked passively in.
The facts
My summary. Numbers refer to the judgment paragraphs.
Mrs Mordel was offered Down’s screening by her midwife, Ms Foley, and “accepted” combined screening at 11-13 weeks. This meant adding a measurement of the thickness of the skin over the back of the neck (nuchal test) to the routine scan, and undergoing an additional blood test. She expressed doubt as to whether, if the screening showed a high risk, she would undergo the second phase needle test with its small risk of causing miscarriage [8]. The midwife booked the scan and nuchal test, and gave her the NHS Down’s screening leaflet, which Mrs Mordel decided not to read because she had watched a You Tube video and “understood the position” [36]. In cross-examination, she confirmed that she had a good command of English and was quite comfortable in dealing with medical professionals in English [31]. When she attended later for the scan the following exchange took place.
The sonographer, Ms Bracher, having introduced herself, asked “Do you want the screening for Down’s syndrome?” Mrs Mordel said “No”. Ms Bracher said, “So we are not doing the screening then, we are just doing the dating scan and I will be checking the baby and making sure that the dates are correct”. There was no response from the claimant. The claimant was asked to lie down on the table. Ms Bracher then clicked on the box in the dropdown menu, “Down’s screening declined”, and this was not a mistake – the claimant had said “no” and nothing else.”[55]
At the end of the scan the sonographer wrote “Down’s screening declined” on the report, a copy of which she filed in Ms Mordel’s hand held notes, and which Ms Mordel agreed that she had read [38]. The screening blood test which Ms Mordel should have been expecting was not done, and no screening result was ever issued. At later visits with her midwife no further discussion of Down’s screening took place. A Down’s affected baby was born.
The claim and the ruling
Mrs Mordel initially claimed that the sonographer had not said anything, but the judge rejected that, leaving her alternative claim that the counselling described above was inadequate. Five experts were divided and the judge couldn’t choose between them [134]. He considered the following factors.
There were language issues. Mrs Mordel was Polish[8] . Her “English is good but far from excellent” [21], although she was “happy to receive the NHS booklet in English rather than Polish” [23].
She was not the sharpest tool in the box, although he put it in judicial language. “There were occasional failures to understand what was being put to her by both counsel, particularly if the question or proposition had a degree of nuance or complexity. On reflection, and with respect to the claimant, I put that down not primarily to lack of competence in the English language (although it remains a significant factor) but to her general level of education and sophistication” [21].
She really wanted the test. This was an unplanned pregnancy [8], her mood was low [8]. She had no religious and ethical objection to abortion. Although a Roman Catholic, not that she described herself in that way, my sense of her evidence was that she was not particularly devout and in cross-examination she said that she attended Mass 3-4 times a year when she felt a need to. She has previously used contraception and has not married her partner [30].
And he believed her. He found her a guileless witness and therefore believed her statement soon after the birth, that she thought that having asked for testing, she had been tested. Much of his argument took the form that since she clearly had misunderstood, she must not have been adequately informed.
He ruled that Ms Bracher the sonographer should have questioned her harder [98, 99], and that “Midwife Foley failed to discharge her duty […] in not exploring why the combined test had not been carried out” [141]. At that later time point there would have been time for an alternative screening test.
Comment
Coo-er! It all sounds rather patronising – the staff should have triple-checked because she was a stupid foreign unmarried woman with an unplanned pregnancy who didn’t understand plain English! But I wasn’t in court. Nor probably were you dear reader. We can only comment on what we read.
But the judge revealed, in my opinion, a serious misapprehension, namely that non-directive counselling is easy. “The steps required to guard against parental choice not being respected are not onerous” [86].
Really? Yes, the sonographer could have pressed more. Yes the midwife could have asked why she’d changed her mind. But this is what we teach sonographers and midwives not to do. Don’t question women’s decisions. That is the way people get bullied into screening that they don’t really want.
To be fair the judge anticipated and rejected this criticism [90]. In his opinion that risk only arises in the event of maladroit or insensitive interrogation, and NHS professionals are well habituated to avoid that. He was careful not to argue that only women who decline screening should have their refusal double checked. Having established [51] that Ms Bracher would have spoken in the same way, to a woman who had changed her mind to undergo screening, he argued [95] that this would also have been inadequate because of the risk that patients who did not want screening for Down’s syndrome would end up having the nuchal test.
Midwives and sonographers have difficult jobs. Let’s hope they all do better. That they double check both those women who change their mind to decline, and those who shift to acceptance, and do it in such a sensitive way that no-one feels bullied into testing.
Let’s hope they don’t only double check vulnerable non-English speaking decliners, and that more widespread questioning doesn’t pressure more women into testing they don’t really want.
Jim Thornton