Archie Battersbee, died on 6 August 2022, a 12-year-old boy from Essex who loved martial arts and gymnastics.
Over the previous four months, after he was found unconscious with a ligature round his neck at his home on 7 April 2022, decisions about his medical treatment, and indeed whether or not he was still alive or already dead, played out through the courts and the media in a way not seen in this country since the Charlie Gard and Alfie Evans cases in 2017/18.
Over those months, Archie’s case went through the High Court (four times), the Court of Appeal (three times) the Supreme Court and the European Court of Human Rights, as well as being referred to the United Nations Committee on the Rights of Persons With Disabilities (UN CRPD).
Legally the case was simple: ultimately (if Archie was not already brain stem dead, and it was best to proceed on the basis that he was not), it was held not to be in his best interests for life sustaining treatment to continue, and he died after his ventilation was withdrawn by his treating clinicians.
In every other way, of course, it was anything but.
The law on brain stem death
The only unusual thing about the case, legally, was that it started not as a best interests decision, but as an attempt to establish whether Archie had already died. His heart was beating, and blood was pumping, but this was entirely sustained by the medical machinery. It was thought that his brain may have already irreversibly lost the ability to do this for himself, and so that he might meet the criteria developed to recognise ‘brain stem death’.
On 13 May 2022, the High Court (Mrs Justice Arbuthnot) allowed testing for brain stem death to go ahead, against the family’s wishes. However, it could not be performed because Archie did not react to a peripheral nerve stimulation test which was a precursor to the brain stem test. The Guardian therefore made an application that Archie undergo a further MRI scan, which was granted (on 27 May 2022). The scan took place and showed global shrinkage of Archie’s brain, and, having considering the evidence, Arbuthnot J declared (on 13 June 2022) that Archie had, on the balance of probabilities, died on 31 May 2022, shortly after the MRI scans were taken .
Arbuthnot J granted the parents permission to appeal on the single ground that she should have applied the criminal standard of proof (ie beyond all reasonable doubt) rather than the civil standard of proof (ie balance of probabilities) when declaring death. The Court of appeal allowed the parents to add 5 additional grounds of appeal. Even though Arbuthnot J went on to say that if she was wrong about Archie being dead, then it was in his best interests to withdraw treatment, her decision that he was already dead tainted that finding, and the Court of Appeal directed that this be considered afresh purely as a best interests decision.
Note that the approach to brain stem death testing is established in The Academy of Medical Royal Colleges’ Code of Practice for the Diagnosis and Confirmation of Death (2008), which is currently under review [Full disclosure: I am a member of that working group, in my role as a member of the Faculty of Intensive Care Medicine’s law and ethics policy unit]. A new version of the code is expected in 2023, and no doubt this will also be informed by the even more recent case of Re: A (a child).
The law on a child’s best interests
Once the case went back to court on that basis, Mr Justice Hayden held that it was not in Archie’s best interests for life sustaining treatment to be continued:
“Where, as here, the treatment is futile, it compromises Archie’s dignity, deprives him of his autonomy, and becomes wholly inimical to his welfare. It serves only to protract his death, whilst being unable to prolong his life”.
The law is not complex – in any decision to be made about a child, the child’s welfare is paramount. Though the Children Act 1989 s1 uses the phrase ‘welfare of the child’, there is no meaningful distinction between ‘best interests’, which is more familiar terminology for the Mental Capacity Act 2005, dealing with people over 16, and ‘welfare’. Applying the law in practice is the problem, especially when there is, in good faith, a profound disagreement over where the child’s best interests lie.
In those cases, just saying that ‘the child’s best interests’ is the test does little more than reframe the question, rather than offer an answer. I am yet to see a case in which either clinicians or family think that their own position is not in the child’s best interests.
But that reframing does usefully show that the question is not simply: what do the parents want? but neither is it simply: what do the clinicians want?
There should be alarm bells in any case where it feels that either clinicians are riding roughshod over a family, or vice versa. Both perspectives must inform a decision, and though care must be taken not to lose sight of a child’s best interests in the search for such a consensus, in the vast majority of cases a respectful compromise is possible.
Of course, that will not always be possible – and where not, these disputes inevitably play out in the most fraught and emotional circumstances, and all too often against a background of broken relationships and distrust.
And in those cases, it is right that the court resolves that dispute.
Parents’ rights, responsibility, and experience
The experience of going through such a medical treatment situation for a loved child is hard to imagine, even before the stresses of litigation and media/social media coverage is added. We can only know of the Battersbee family experience that which was reported in the press, ie that they felt stripped of their rights, as parents, to make decisions about their child.
It would help, perhaps, if the legal framework were better understood. It is rightly presumed that parents know their child best, and so know what is best for their child. The court will not lightly interfere with this. As Mr Justice Baker said in the Ashya King case (in which the parents took him out of hospital and took him abroad for treatment sparking a manhunt):
“…it is a fundamental principle of family law in this jurisdiction that responsibility for making decisions about a child rests with his parents. In most cases, the parents are the best people to make decisions about the child and the State – whether it be the court or any other public authority has no business interfering with the exercise of parental responsibility unless the child is suffering or is likely to suffer significant harm as a result of the care given to the child not being what it would be reasonable to expect a parent to give” [Portsmouth City Council -v- King [2014] EWHC 2964 at para 31.].
But no judge has yet bought the argument that the Gard, Evans and Battersbee families have tried to build on this: ie that there is ‘a zone of exclusive parental control’ where it is none of the court’s business what the parents decide.
It is not, ultimately, about parental rights. Parental responsibility brings a duty to do what is in the child’s best interests, not a power to determine beyond challenge that something is in the child’s best interests because the parents say so.
The rights at the centre of such cases are the child’s – to have a decision made which is in their best interests.
Legal advice and funding
In such litigation, the child is represented by their own lawyer, usually through Cafcass and publicly funded.
But legal aid is not typically available to the child’s parents, as things stand, which can leave them dependent on lawyers acting pro bono, on fundraising or charity (such as the Christian Legal Centre, which was involved in the Battersbee case, as it was in a number of previous high-profile cases).
We understand that this might be under reconsideration now, and it would, undoubtedly, be better if legal aid was made available to parents/family in such cases.
Reform
Such funding reforms were just one element of the changes proposed by ‘Charlie’s Law’ [The Children’s Medical Treatment (Dispute Resolution) Bill, introduced on 18 March 2020], advocated by the family of Charlie Gard, and introduced as a private member’s bill in the last parliament by Labour MP Bambos Charalambous MP on 18 March 2020.
In summary, the bill also asserted parental rights in medical treatment decisions for their children by:
- requiring that the views of parents must be ‘listened to and taken into account’; and
- that the court must defer to a parent’s decision about a moving a child elsewhere for treatment unless the proposed provider is ‘not a reputable institution’, or it will bring ‘a disproportionate risk of substantial harm’ to the child (ie introducing a zone of exclusive parental control, or a threshold before the court can intervene).
And, in cases of dispute, the Bill required mandatory:
- mediation; and
- referral to a clinical ethics committee.
Mediation is already used effectively in a number of cases, and a discussion at an ethics committee should be standard practice, though it is not usually expected to be a forum with responsibility for making decisions, still less for resolving disputes.
But Charlie’s Law never passed.
More recently, Baroness Findlay proposed an amendment to the Health and Care Act 2022 which would have introduced a duty to ensure that the parents ‘are listened to and taken into account’ in any dispute about palliative care for a child but would have explicitly not have affected ‘the principle of the best interests of the child’.
That amendment fell away as well, but we did get – in s177 of the Health and Care Act 2022 – an obligation on the Secretary of State to arrange for ‘a review into the causes of disputes between (on the one hand) persons with parental responsibility for a critically ill child and (on the other) persons responsible for the provision of care or medical treatment for the child as part of the health service in England’.
That review must be published within a year of the section coming into force (though it has not yet actually been brought into force).
There may yet be reform on the way.
Conclusions
Though such a review may be welcome, it is hard to imagine that the law (which is simply that a decision must be made in the child’s best interests) is the problem, so much as the challenges about relationships, communication, trust, and managing expectations in unimaginably fraught and emotional situations.
For context, such litigation is not commonplace in all other jurisdictions: As of 2020 [Medical Decision Making on Behalf of Young Children: A Comparative Perspective, ed Imogen Goold (2020)], there had never been a reported case of a medical treatment dispute over a child in Scotland, and only a handful in Ireland. (In Ireland, the parents are presumed to know best for their child, but only if they are married – arguably giving the child greater protection in an unmarried family, where their best interests still hold sway rather than deference to marital family). In Spain, conversely, deference to clinicians is such that their decisions are almost never challenged by families. In France, parents have some leeway so that decisions for their children are only challenged if parental refusal to agree to clinicians’ proposals is ‘unreasonable obstinacy’.
The English experience of fairly frequent and hotly contested litigation seems to be rooted in a combination in our culture of prominence of individuality and rights (in particular of the child), of not deferring unquestioningly to either medical authority or to parental authority, and of a well-established legal mechanism to bring cases.
Harrowing though such litigation is, I suspect that many people would not wish to change much of that.
For further information, please contact:
Ben Troke, Hill Dickinson
ben.troke@hilldickinson.com
