Judge makes best interest decision on end of life treatment for young child without relying on parental consent

A High Court judge has allowed a local authority’s application for leave to invoke the inherent jurisdiction in relation to the withdrawal of medical treatment and the provision of end of life care for a young child.

The matter came before Mrs Justice Lieven because the local authority was said to be “extremely concerned” about the parents' capacity to give consent to end of life treatment for their son, Z.

In A Council v An NHS Foundation Trust & Ors [2024] EWHC 874 (Fam), the judge made a best interests decision without relying on parental consent, after taking an “interim view” that the mother did not have capacity.

The case concerned a young child, Z, who was born two years ago. Z was made subject to a care and placement order in October 2022 in respect of both him and his twin brother, Y, who is now in foster care.

Both boys were born with cardiac defects, transposition of arteries and a number of other really serious physical abnormalities. Z, however, was “the one who was far more seriously affected”, according to the judge.

Z was transferred to a children's hospital very shortly after his birth and he has remained in hospital ever since.

In July 2023, Z’s tracheotomy tube became dislodged during a period when he was not being observed and that resulted in a cessation of his oxygen supply.

Lieven J said: “It appears that he was then in a major and prolonged cardiac arrest for something like 15 minutes, which led to severe hypoxic-ischemic brain damage, ventilator dependence and very pronounced drug-resistant dystonia and deafness.”

Z was re-admitted to the intensive care unit where he has been since.

Last December, the hospital convened a specialist multidisciplinary team with consultants from palliative care, respiratory physicians and physiotherapists, neurologists and other staff.

The judge said: “The unanimous view was that [Z] was not showing any sign of improvement and has no quality of life. I understand that, in fact, even since then there has been further deterioration. […] In those circumstances, the NHS Trust took the view that it was appropriate to move to a palliative care model and for Z's life to be brought to an end”.

The reason the matter came before the judge was because the council was concerned about the parents' capacity to give consent to end of life treatment for Z.

Both parents are heroin addicts and had a history of “fluctuating engagement” both with the care proceedings and with Z in hospital. The father did not have parental responsibility for Z, therefore he could not formally in law consent to the treatment.

The local authority applied to the court for a capacity assessment to be ordered in respect of the mother.

The judge said: “I considered it was appropriate to order a capacity assessment. However, unfortunately but perhaps not wholly surprisingly, the mother has not engaged in that assessment and, indeed, has not, I believe, spoken to the LA since Tuesday. 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.”

Lieven J ordered for the NHS Trust to use its “best endeavours” to get a second opinion in respect of Z's treatment. Professor A from another paediatric children's hospital set out a short report, in which his position was “precisely in line” with that of the treating clinicians.

The judge said: “He considers that Z, effectively, has no quality of life and no possibility of any meaningful improvement, and in those circumstances he entirely supports a decision to move Z on to palliative care. Therefore, all the evidence in this case, and the opinions of all concerned, are unanimous in terms of what should happen.”

Turning to the mother’s capacity, the judge said: “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.”

She added: “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.”

The judge found it to be “inappropriate” to rely on a presumption of capacity in these circumstances, where the decision was as to whether the mother's child be allowed to die. Therefore, the judge proceeded on the basis that the mother did not have capacity.

Concluding the case, Lieven J said: “I am not going to make a finding [the mother] 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.”

Making a best interests decision without relying on parental consent, Lieven J concluded: “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.”

Lottie Winson