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Informed consent and informed dissent: two sides of a coin?

Whilst we are all familiar with the need to ensure that patients are fully informed prior to consenting for treatment, the mirror-image duty of ensuring that their refusal is equally informed has been considered in court after a mother claimed that her delivery of a baby with Down’s syndrome could and should have been avoided. 

Ms M, pregnant, presented herself at the booking appointment in the ninth week of pregnancy and accepted the offer of a number of tests which included combined ultrasound and serum screening for Down’s syndrome. Returning in her thirteenth week for the nuchal fold thickness scan, the sonographer recorded that Ms M declined this test, and for this reason the serum screening element was in turn not performed. A second trimester ‘quadruple’ test was not offered.

Having heard the evidence, the court found that the sonographer had asked Ms M whether she wanted the screening for Down’s syndrome, that the claimant said no, and that the sonographer had 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 the dates are correct.'

The judge found that there was ‘no real distinction between on the one hand consenting to and on the other declining a procedure in these circumstances’, largely because the patient had either to accept or reject the offer of the scan on the basis that it was properly informed. (Risking the cliché, this might be expressed as consent and dissent being two sides of the same coin).

The court noted that the obligation to secure informed consent falls on the clinician rather than the patient, making clear that it was not the patient’s reasons for acceptance or rejection that needed to be unpicked, ‘rather, a gentle exploration is required of the patient’s state of mind, conducted for the limited and specific purpose that she understands what is entailed’. In other words, the issue was the nature of the steps required to secure informed consent. These steps amounted to a limited number of questions to ensure that an ‘unwarranted outcome’ was avoided.

Summing up, the judge did not accept that the sonographer’s role was limited to hearing the patient’s acceptance or declination of Down's syndrome screening. Rather, he found that she should have checked there had been a discussion at the time of the booking scan - that Ms M had been supplied with the relevant booklet, and that brief questioning was required to ensure that the patient understood the essential elements and purposes of scanning for Down’s syndrome. In doing so, the judge was echoing the evidence given by the claimant’s expert witnesses. It would be interesting to know how this accords with current practice in obstetric sonography.

The judge’s explicit approach was to ensure, in circumstances where the patient had provisionally accepted screening for Down’s syndrome, that she still wanted it. If she had dissented, the sonographer should then have sought confirmation, since the answer ‘no’ without more provided insufficient enlightenment of Ms M’s attitude to Down's syndrome screening.

In finding for the claimant, the judge found, based on the totality of the evidence, that the ultrasonographer had not taken sufficient steps to ensure that the patient was making an informed decision. Without being in court, no commentator can seek to go behind that judgement.

But we are free to consider the idea that there is ‘no real distinction between on the one hand consenting to and on the other declining a procedure’. If viewed as two sides of the choice coin, presumably the duty to ‘gently explore’ the state of the patient’s mind applies equally to consent and dissent. Many treatment decisions start with a clear intuitive ‘best’ outcome, for example, that acquired blindness should be avoided. If after reasonable disclosure the capacitous patient chooses not to accept sight-saving treatment (the ‘dissent’ face of the coin) we’ll surely explore that decision. But if she chooses the ‘consent’ face, are we really gently to probe her state of mind because we have not been sufficiently enlightened by her answer?

This judgement may be applicable to screening decisions (the judge making it clear that the duty existed ‘in these circumstances’). But we should be slow to extrapolate the idea that there is no real distinction between consent and dissent to the common clinical situation where there is a near-universally accepted ‘best’ outcome. On the other hand, genetic screening and/or termination of pregnancy remains contentious, with eminently reasonable citizens taking polar opposite views as to what is ‘best’. In this, and other situations where clinical equipoise prevails over investigation or therapy, we should all be cautious to ensure that both consent and dissent are informed.

 

Robert Wheeler
Department of clinical law, November 2019