A recent High Court case has highlighted for midwives the importance of obtaining and confirming valid consent. Mordel v Royal Berkshire NHS centred on what information had been provided and understood in relation to Down syndrome screening.
The mother (‘EM’), a 28-year-old primigravida originally from Poland, attended a booking appointment when she was about 11 weeks pregnant. The midwife documented that EM had agreed to a nuchal translucency (NT) scan, in addition to a dating scan and blood tests, but that she was ‘unsure’ about second phase invasive testing. The midwife provided EM with a Down syndrome screening booklet. A Polish language version was offered but EM indicated she was happy to receive the English version. The judge noted that while EM's grasp of English was good it was
‘Far from excellent, and 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’.
Indeed, EM conceded that she had not read the Down syndrome screening booklet by the time she attended for a NT scan at around 13 weeks, although she had accessed YouTube for information and claimed to understand the situation. At the scan, the sonographer recorded ‘Down syndrome screening declined’ in the electronic notes. In court, she stated that although she could not remember EM, her customary practice was to ask the woman whether she wanted the NT scan. If the woman said, ‘No’ and there were no other factors which would lead her to doubt that the question had been understood, she would simply accept this decision. As a result, she performed a dating scan, not an NT scan, and no further blood tests were taken.
At EM's 16-week appointment with the same midwife, there would have been an opportunity to discuss these events, and even to undertake the quadruple test, but the midwife, on seeing the ‘Down syndrome screening declined’ entry in the notes, merely noted this. No further discussion took place and no further action was taken. Ultimately, EM gave birth to a boy who has Down syndrome.
This case turned on whether adequate information had been given to EM, and whether the midwife and the sonographer had taken adequate steps to ascertain what EM had understood and what she had decided.
The judge noted that the relevant National Institute for Health and Care Excellence ([NICE], 2008) guideline stated that the 16-week appointment was a time to
‘Review, discuss and record the results of all screening tests undertaken; reassess planned pattern of care for the pregnancy and identify women who needs additional care” and to “give information, with an opportunity to discuss issues and ask questions, including discussion of the routine anomaly scan…’
The judge also referred to the defendant Trust's Down syndrome screening policy, which stated:
‘The offer of screening and the decision to accept or decline should be recorded in the hand-held notes … the midwife should document in the hand-held notes that Down syndrome screening has been discussed, what written information has been given, and whether the woman accepts, declines, or is undecided about the tests.’
EM was adamant that she had wanted the first phase screening, and believed that it had been performed by the sonographer. She thought that ‘declined’ meant that the sonographer had declined further screening on the basis that the scan had not shown any problem. As stated above, the sonographer performed a dating scan, not a NT scan. EM's misapprehension about what had happened was not picked up at her subsequent midwife appointment. As one legal commentator noted:
‘The striking feature of the consent process in this case was that it was not clear who was actually obtaining the patient's consent in these circumstances.’
The defence's obstetric expert witness claimed that when the midwife provided information at the booking appointment about screening tests, she was not obtaining consent for the screening but merely giving ‘an informed offer’ of screening. This point does not clarify who obtains consent. The witness explained that
‘In his experience, a change of mind on the part of the patient would not be rare. He came across this quite regularly, and it was his practice to ask patients quite carefully whether they want to go ahead with the screening.”’
Another expert witness conceded that if the sonographer had asked, ‘Do you want the Down syndrome screening?’ but had done nothing further in reaction to a ‘No’ answer, this was not taking adequate steps to identify the woman's decision (per Jay J at 81). In other words, there must be more discussion. The problem, as the commentator BLM notes, was that while the NICE guideline referred to the midwife providing the woman with information in relation to screening:
‘It is less clear in relation to the obligations around obtaining consent. It seems very unlikely indeed that the sonographer was aware that she was tasked with obtaining consent in these circumstances, and indeed it was specifically found that the sonographer was not trained to provide advice.’
Nevertheless, the court decided that the sonographer should have checked that EM and the midwife had discussed screening, that EM had received the relevant NHS booklet and had understood the essential details about Down syndrome and screening. One of the midwife experts stated that a midwife should not steer clear of discussing Down syndrome screening even when ‘Down syndrome screening declined’ is recorded on the scan report. There should, she said, be
‘Gentle exploration with the patient along the lines of: “Tell me about the scan?’ and ‘Did they ask you about Down syndrome screening?”’
However, a second midwifery expert did not believe that the midwife should have queried the ‘Down syndrome screening declined’ entry in the records. The midwife was, she claimed
‘Entitled to respect the woman's decision as recorded at the scan; there is nothing to investigate’
This is seemingly at odds with the Trust's screening policy (noted above) which stated that more detail about the process of discussing screening should be recorded.
The judge agreed with the Trust's document, and held that both the midwife and the sonographer had failed in their duty of care. A birth following such a failure is known as a ‘wrongful birth’. The judge referred to the Supreme Court case of Montgomery (2015) which established that consent must be informed and be seen to be informed. Consent is a process, not a one-off event, especially in cases such as this where procedures or interventions may be discussed in advance. People are entitled to, and often do, change their mind. As such, it is incumbent on practitioners to check carefully what a woman understands and what she decides. Continuity of carer should help, since there is no need to start from scratch each time if the woman and midwife see each other regularly and build up a trusting relationship.
Another complicating factor in this case was language. Although EM had been happy to receive the English language version of the Down syndrome screening booklet, she admitted she did not read this, and it's possible that she might have found it easier to read and understand the booklet's Polish version. Handing a woman a leaflet is easy. Checking that she understands the issues is harder, especially if, as in this case, she was also searching for information online. Midwives need to know how and where women are accessing information, and should take steps to check their understanding of the relevant topic.