Capacity, presumptions and catastrophe

As Lieven J noted in her opening paragraph, A Council v An NHS Foundation Trust & Ors [2024] EWHC 874 (Fam) was, even by the standards of the Family Division, a particularly tragic and awful case. It has recently appeared on Bailii, but was decided at the start of 2024.  It concerned Z, one of two young twins who had both been born with health issues.  He had remained in hospital since birth, when (in terms described cryptically in the judgment), something clearly went wrong such that his tracheostomy tube was dislodged, and he was in major and prolonged cardiac arrest for 15 minutes.  There was no prospect of his recovering.

The case came before the court because the local authority was very concerned about the parents’ capacity to make decisions about end of life treatment for Z. In the case of Z’s father, this was his legal capacity.  In the case of Z’s mother, this was her mental capacity.   Z’s parents  were both heroin addicts and had a history of fluctuating engagement with the care proceedings that had been brought shortly after his both, and with him in hospital.  There was no doubt that the father had mental capacity to make decisions about his son’s medical treatment but on the facts of the case,,  he did not have parental responsibility and could not therefore formally in law consent to treatment. Whilst Z’s mother did have parental responsibility, the local authority had real doubts about her mental capacity.  The local authority therefore sought an order for a capacity assessment, an order Lieven J willingly granted. However, unfortunately (but as Lieven J noted) perhaps not wholly surprisingly, Z’s mother did not engage with it.  As Lieven J noted at paragraph 12.

Quite apart from the fact the mother apparently has a history of non-engagement at certain times, it is hardly surprising in the circumstances that the mother has found this situation so overwhelming that she has defaulted to a position of non-engagement.

At Lieven J’s direction, a second opinion was obtained, confirming that Z had no quality of life and no possibility of any meaningful improvement.

Lieven J identified that the first issue in terms of what to do at the substantive hearing of the matter was as to what she should do about the mother’s capacity:

17 […] In order for the court to rely on a decision of the mother that Z should be moved to palliative care only, I have to be satisfied that she has capacity and I also have to be satisfied that she gave informed consent. I am very conscious of the fact that the NHS Trust considers that she does have capacity and also relies on the presumption in favour of capacity under section 1(2) of the Mental Capacity Act 2005. I am, however, equally concerned that the case law suggests that, when a court is considering capacity, the more important the decision the more careful the court needs to be that the person in question has capacity, as well as being particularly careful that they can give informed consent. 

18. The evidence in this case is very limited. I have the LA’s deep concern about whether the mother has capacity. I have the Trust saying that they thought she did have capacity in December, but they were not undertaking a formal capacity assessment under the Mental Capacity Act. I am very conscious of the fact that, for the mother to have capacity, she must be able to process the information that is given to her. I am not at all confident that she could process the information and I am equally concerned that she has not considered the information in any detail since December. 

19. I consider it to be inappropriate to rely on a presumption of capacity in these circumstances where the decision is as to whether the mother’s child is allowed to die. It does not feel to me judicially comfortable to rely on a presumption of capacity in those circumstances where I know that the LA, which has had considerable contact with this mother in the past, has such worries about her capacity. I am going to proceed on the basis that the mother does not have capacity. I am not going to make a finding she does not have capacity because I do not have the evidence, but, I think, I can make a section 16 decision and take an interim view that she does not have capacity. Even if she does have capacity to make the relevant decision, I am even more concerned that she cannot give informed consent, because I have very little evidence as to what information she was given in order to give informed consent within the meaning of the case law.

It therefore fell to Lieven J to determine what was in Z’s best interests, and not rely upon parental consent.  She did, however, take into account what was known of the views of the mother, and the father’s view.  She concluded, that, sadly:

21. […] Sadly, I think there is very little doubt that this is a clear decision. There is a unanimity of clinical view, including a second opinion, that it is in Z’s best interests to allow his life to end. The medical evidence is so overwhelming, as to the level of his suffering, as to the lack of hope of any improvement in the quality of his life and, importantly, as to there being no alternative care plan which could improve his quality of life, that, in my view, it is clear it is in Z’s best interests for the palliative care plan to be approved and for me, under the inherent jurisdiction, to allow the withdrawal of medical treatment and the provision of end of life care. I give consent for that application to be brought and I allow the application.


Of wider relevance beyond the very sad facts of the case itself is Lieven J’s careful approach to the presumption of capacity.  In contrast to situations such as that noted here, Lieven J was clear (and I suggest clearly right) to take the view that reliance on the presumption would simply be improper in the face of evidence giving rise to real doubt as to whether Z’s mother had capacity to make the relevant decisions.  It is also of interest, perhaps, to note Lieven J’s careful self-direction (at paragraph 17) in relation to the approach to be taken to important decisions – i.e. not that there is a sliding scale in terms of the person’s capacity, but there is, rather, a particular importance for the court to test whether the person has it.  Whatever may have been the position before the coming into the force of the MCA 2005, where the term ‘sliding scale’ was used, the statutory scheme of the MCA 2005 does not on its face allow for such a scale; rather, I would suggest that Lieven J’s approach represents the proper calibration.

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