Brain stem death, an explainer of the law in England & Wales, and a question of consent

The case of Andy Casey sheds light again on the difficult question of diagnosing death by neurological criteria (‘DNC’), and the wider question of what, in fact, it means to be dead.  For those who want to know more about it, this explainer by my colleagues Victoria Butler-Cole KC and Ben Tankel is helpful; my review of the recent book on the medico-legal development of neurological death in the UK by Dr Kartina Choong may also be helpful.  And some may want to see the 2008 Code of Practice for the Diagnosis and Confirmation of Death by the Academy of Medical Royal Colleges, as well as the 2015 RCPCH Code relating to those under 2 months old (both currently under review).

One point to note is that it appears before the High Court that there was an assumption that DNC testing requires the consent of a person with parental responsibility (if the individual is a child), or recourse to the Mental Capacity Act 2005 as a work-around for the inability of an adult suspected of being brain stem dead to give the necessary consent: see paragraph 31. In this regard, it is perhaps of note that this is an assumption which was not necessarily shared by the Court of Appeal in the only previous case to reach it relating to DNC testing (the Battersbee case concerned the situation where it was not possible to carry out DNC testing)..  In Manchester University NHS Foundation Trust v Namiq & Anor [2020] EWHC 180 (Fam) (concerning a very young child, and hence in circumstances where both the 2008 Code and the 2015 Code were relevant), Lieven J was faced with the argument that:

[t]he DNC tests could only be carried out if the parents had given fully informed consent. He relies on Glass v UK to argue that the tests would be invalid without such consent. In my view this argument is wrong for a number of reasons. Firstly, the parents were aware that the tests were going to be carried out probably that day, as is shown by the transcript of the conversation with Dr E, and the Father did ultimately accept this. The transcript does not suggest that the Father or Mother said the tests should not go ahead. Further, the parents were fully informed as to the purpose of the tests, so in my view the issue about “informed” consent goes nowhere on the facts of the case. Secondly, I do not think there is any requirement for written consent from the parents, or for the information to be written down. There is no such requirement in the Code. Glass is dealing with a very different situation, where the issue was the withdrawal of certain treatment. It is not clear to me that consent would necessarily have to be given for a test at all. But, I do not have to decide that issue because the parents undoubtedly knew that the test was to be carried out, and knew what the test was about. Therefore they were given the appropriate information, and on the facts of the case their consent can be inferred from their conduct. Thirdly, and in any event, even if the tests should not have taken place because of lack of consent that does not mean that the outputs of the test would not be admissible before me. I am being asked to decide a factual question as to whether Midrar is dead, and lack of consent would not vitiate the evidence that goes to that issue (emphasis added)

Lieven’s decision was challenged on this ground before the Court of Appeal, but the Court of Appeal held that “for reasons given by Lieven J, there is no merit in this point” (paragraph 68).  And it is of note that the Canadian position in guidance published in May 2023 is that “consent for DNC testing should neither be required nor requested” – further explanation as to why this may be being given here (and note neither the 2008 nor the 2015 Codes mention the word ‘consent,’ with the words ‘best interests’ in the 2008 Code reserved for decisions about treatment of the patient, and not appearing in the 2015 Code at all).  Put shortly, the argument that consent / a workaround for consent is not needed is that doctors should not be seeking to undertake DNC testing unless they properly consider that the person is brain stem dead.  And if a person is, indeed, brain stem dead, seeking consent by proxy (for a child) or thinking about their best interests for MCA purposes to testing is legally meaningless.

There is no doubt that involving those close to the person is hugely important, but I suggest that it is extremely important to know the basis upon which such involvement is taking place: seeking consent (in relation to a child), consulting or informing?

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