Archie Battersbee’s life support was withdrawn yesterday, and his mother announced that he had died at 12.15 in the afternoon.
His parents have fought for his life with extraordinary determination. From their point of view it must have seemed as though the medical and legal establishments have unreasonably closed ranks to deprive their son of his last, incredibly slim, chance of life.
I think that view is wrong, but the questions raised by the case are agonisingly difficult.
Archie’s mother and her MP have suggested that there should be changes in the law surrounding end of life decisions for children, although exactly what changes she wants are unclear.
At present the law is clear enough to be stated in a single sentence and it is hard to imagine that anyone could sensibly disagree with it: what is best for this child?
It is set out formally in S.1 of the Children Act 1989:
“Welfare of the child.
(1) When a court determines any question with respect to—
(a) the upbringing of a child;
the child’s welfare shall be the court’s paramount consideration.”
This has always been understood this to mean that the judge’s duty is to place the child’s welfare above all other considerations. Insofar as anyone else’s interests conflict with those of the child with which the court is concerned, it is the child’s interests that must prevail. On those rare occasions when a parent’s interests differ from the interests of their child, it is the child’s interests that must prevail.
S.1 provides a “checklist” of considerations to which judges are required to have “particularly regard” when making such decisions. Those that may be relevant in the context of a sick or dying child are these:
“(a) the ascertainable wishes and feelings of the child concerned (considered in the light of his age and understanding);
(b) his physical, emotional and educational needs;
(c) the likely effect on him of any change in his circumstances;
(d) his age, sex, background and any characteristics of his which the court considers relevant;
(e) any harm which he has suffered or is at risk of suffering;
Such a list is helpful to ensure that important points have not been overlooked, but going through a checklist of this sort does not answer the question of what determines a child’s “welfare” actually requires in a case like this.
According to Munby LJ in Re G  EWCA Civ 1233 “welfare” is synonomous with “well being” and “interests.” It:
“… extends to and embraces everything that relates to the child’s development as a human being and to the child’s present and future life as a human being.”
Evaluating a child’s best interests, said Munby:
“… involves a welfare appraisal in the widest sense, taking into account, where appropriate, a wide range of ethical, social, moral, religious, cultural, emotional and welfare considerations. Everything that conduces to a child’s welfare and happiness or relates to the child’s development and present and future life as a human being, including the child’s familial, educational and social environment, and the child’s social, cultural, ethnic and religious community, is potentially relevant and has, where appropriate, to be taken into account. The judge must adopt a holistic approach.”
That is all very well when the judge is ruling on an everyday dispute between parents about where a child should live or which school he should go to, but it is less help when dealing with the huge moral and ethical issues that cases such as Archie’s raise.
Sometimes religion will offer solutions, but the judge cannot accept them. Opinions about the necessity of providing medical treatment to those on the edge of life and death differ wildly even within the same branch of the same religion; and even where there is an “orthodox” religious view a judge cannot assume that the child shares it, or would share it if he had been able to understand or think about it. As Munby put it:
“Religion is not the business of government or of the secular courts, though the courts will, of course, pay every respect to the individual’s or family’s religious principles.”
The conflict between religious beliefs and the “welfare” principle was the theme of Ian McEwan’s novel The Children Act, in which the judge was required to determine whether a 17 year old Jehovah’s Witness should undergo a life-saving blood transfusion in defiance of his strong religious objections.
There are some echoes of a similar conflict in Archie’s case. Archie’s older brother’s fiancee described the family as “vaguely Christian” at one time, although they had never been regular churchgoers. When Archie took up mixed martial arts he noticed that many participants prayed before going into the ring. After this he had paid for a crucifix out of his pocket money and had asked to be christened, although this did not in fact take place until after his accident when the hospital chaplain baptised both Archie and some other members of his family.
The family have been supported by the Christian Legal Centre, a campaigning organisation with a mission “to provide legal support for those taking a stand for Jesus and the truth that flows from him.” In fact, the Christian Legal Centre is described by its parent organisation, Christian Concern, not just as group of “born-again” lawyers, but one of three “specialist ministries that complement our wider work.” Not many lawyers regard their work as carrying out God’s ministry in this way. The only one I can think of that came close – and he had no connection at all to Christian Concern – was the late John Smyth QC, a most devout born-again Christian and a highly talented advocate, but an appalling man who used to take young men to his garden shed where he would beat them with a cane until their buttocks were raw, as punishment for having sexually impure thoughts. Neither legal acumen nor strong Christian convictions provide any guarantee of virtue.
What Christian Concern calls its “wider work” concentrates on issues where they believe “the darkness is greatest.” It sees this particularly black moral darkness in gay marriage, “homosexual campaigning,” abortion, IVF, extra-marital sex, and Secularism which “squeezes out other religions and beliefs” (apart from Islam, a religion which it believes “has a disproportionate influence on our society” and so should be squeezed out a bit more). It believes that all human life is sacred and campaigns strongly against assisted suicide and euthanasia.
Archie’s religion was relevant to Hayden’s decision, not least because the Act says it must be taken into consideration, but Christian Concern’s wider 0agenda should be of no concern to the courts, even if others might be suspicious that a dying child’s plight has been exploited by an extreme and intolerant religious sect.
As Mr Justice Hayden put it:
“I am considering Archie’s best interests in the context of a young man who believed in God and whose family believe in God.”
The application in a life or death case of this seemingly simple law is probably the hardest single task that can ever be given to a judge.
There were a bewildering number of applications and appeals in Archie’s case.
The case began when Barts Hospital Trust applied for permission to test Archie’s brain stem. The purpose was to see if he had died. It was opposed by his family, in part because such tests themselves carried some risks. Cessation of activity in the brain stem is regarded, legally and medically, as conclusive proof of, and as one acceptable definition of, death. There is a Code of Practice for the Diagnosis and Confirmation of Death, issued by the Academy of the Royal Colleges, which sets out the criteria which need to be met before doctors can diagnose brain-stem death, and it was the tests set out in the Code which the hospital wished to undertake.
The application for brain-stem testing
The application was heard by Mrs Justice Arbuthnot. She gave permission for the tests to take place. However, the hospital then decided that they should not in fact be carried out. Medical staff were concerned that they might give misleading results. As a result, although the treating doctors thought it likely that Archie was dead, their opinions were not informed by the brain-stem tests that the Code of Practice requires before death can be diagnosed in that way. (Death can also be confirmed by the cessation of cardiorespiratory activity, but not where the patient’s breathing is being artificially maintained by mechanical ventilation).
The application to declare that Archie was dead
In the absence of the conclusive proof that the brain-stem tests would have provided, the hospital returned to court for a declaration that Archie was “brain-stem dead.” The judge was invited to reach that conclusion on the basis of the other clinical evidence. As an alternative it was invited to rule that even if brain-stem death could not be established, that it would be lawful to cease mechanical ventilation, which would then lead inevitably to his death.
Having heard evidence from both the treating and independent doctors, Mrs Justice Arbuthnot made the declaration sought: “on the balance of probabilities” Archie was dead.
Because she could not exclude the possibility that he might be alive, she went on to rule that even if he was not brain-stem dead, the medical prognosis was so poor that it would be lawful to stop artificial ventilation:
“the burdens of the treatment and his condition along with the total lack of a prospect of recovery outweigh Archie’s Christian beliefs and the benefits to him of a continuing life on mechanical ventilation for a few more weeks or months with all the other procedures that that entails. “
“If Archie remains on mechanical ventilation, the likely outcome for him is sudden death and the prospects of recovery are nil. He has no pleasure in life and his brain damage is irrecoverable. His position is not going to improve. The downside of such a hurried death is the inability of his loving and beloved family to say goodbye.”
The First Appeal
The parents appealed this decision and the Court of Appeal ordered a fresh hearing. It noted that although a number of the doctors had expressed the view that it was likely or highly likely that Archie was in fact brain dead:
“No clinician, whether treating or those providing second opinions, suggested that a declaration of death could or should be made without (a) the Code being followed, and (b) a brain stem test having demonstrated brain stem death in accordance with the Code’s strict protocol.”
Thus, in the view of the Court of Appeal, Arbuthnot J should not have made the finding that Archie was dead. The case should have proceeded on the assumption that he was still alive, and the judge should have focussed on the question of what his “best interests” required. Although she had addressed the issue in her judgment, she had done so comparatively briefly. In any case, the Court of Appeal observed:
“It is not … reasonable to expect the parents to have confidence in that decision when the judge had just explained in some detail why she had concluded that Archie was in fact dead. The procedural mis-step taken by the judge means, in our view, that in the circumstances of this case, the decision as to best interests must be decided afresh.”
The application to permit the cessation of treatment
The case was sent back to the High Court and re-heard by Mr Justice Hayden. This time the judge did not try to decide whether Archie was dead. The hearing proceeded on the assumption that he was alive, and the sole question was whether it would be lawful for the hospital to withdraw mechanical ventilation from a living child.
As is usual in cases of this type, the court was also assisted by a “guardian,” an independent court-appointed social worker whose role is to represent the presumed interests of the child. In this case the guardian agreed with the hospital rather than the parents.
Medical opinion was unanimous. Despite his mother’s view that Archie was “still there,” the judge said:
“He has no prospect of recovery. The compelling and unanimous medical evidence is that he has not regained awareness at any time and has now been in a coma, with a Glasgow score of 3/15 (i.e., the lowest) for over 3 months. … Clinical observations reveal that he has been entirely unresponsive and has not shown any sign at all of being able to sustain breathing independently of the ventilator to which he is attached. “
The effect of the brain damage that he had suffered was that without constant medical intervention, and ultimately even with it, his organs would fail completely. The brain damage had worsened since April, and this had led to the failure of his gut which in turn led to diarrhoea and malnutrition. He had developed a type of diabetes closely associated with catastrophic brain damage. There were necrotic secretions from his lungs. He was at serious and increasing risk of suffering ulcers. He needed 1:1 and sometimes 2:1 nursing. There was no prospect of recovery. Providing this intensive level of care where there was no reasonable hope of Archie recovering placed a considerable emotional burden on the medical and nursing staff.
Whilst the family understandably hoped for, and believed in the chance of, a miracle, judges have to ignore the possibility of miracles and act on evidence. That was that even with continued medical treatment Archie would die from organ failure at some unpredictable time within weeks or months. The intensive medical and nursing support served “only to protract death and not to promote life.”
In those circumstances Hayden’s conclusion was:
“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 is this ruling which yesterday authorised the hospital to withdraw Archie’s treatment.
The Second Appeal
This time the Court of Appeal refused to intervene, holding that Hayden had correctly balanced all the relevant factors in arriving at his decision, and agreed that:
“… the continuation of life-sustaining treatment was no longer in the best interests of this moribund child, who is weeks away from a death which will otherwise occur from a gradual further deterioration and then failure of his organs followed by the failure of his heart. Consent can only be given to medical treatment where it is in the patient’s best interests and the consequence of the judge’s assessment is that continued life-sustaining treatment for Archie will not be lawful., even for a period of days or weeks.”
An application to appeal to the Supreme Court was refused, unsurprisingly because the Supreme Court’s usual function is to decide cases where the law itself is unclear. Here the law – though not necessarily its application – is clear.
Other Legal Avenues
Subsequent, increasingly desperate, attempts involving the UN Convention on the Rights of the Disabled, and the European Court of Human Rights have failed to result in any change of heart by the courts.
Article 2 of the European Convention on Human Rights provides (so far as relevant) that:
“Everyone’s right to life shall be protected by law. No-one shall be deprived of life intentionally ….”
The European Court of Human Rights has long held that this does not require the continuation of life-sustaining treatment in every possible situation:
“… States must be afforded a margin of appreciation, not just as to whether or not to permit the withdrawal of artificial life-sustaining treatment and the detailed arrangements governing such withdrawal, but also as regards the means of striking a balance between the protection of patients’ right to life and the protection of their right to respect for their private life and their personal autonomy ….” (See Gard v. United Kingdom (application no. 39793/17)
A final attempt to persuade the High Court to authorise Archie’s transfer to a hospice also failed.
Mr Justice Hayden’s Reasons
It is possible to agree with Hayden J’s conclusion that life-sustaining treatment should cease while feeling some unease about all of the reasoning leading to that conclusion.
His decision was not based upon the risk that such treatment might cause Archie pain. Hayden was explicit:
“Though I do not discount the existence of at least some residual life in Archie’s brain stem, there is a professional consensus here that Archie is most likely beyond pain. The corollary to this is that he is also beyond pleasure. He can experience no comfort nor receive soothing from those around him.”
Nor was it based upon Archie’s wishes, although this was one of the specific matters to which the judge was required to give particular consideration by S.1 of the Children Act. Although they are not “ranked” in order of importance, the first is:
“(a) the ascertainable wishes and feelings of the child concerned (considered in the light of his age and understanding);“
Knowing what Archie’s wishes would have been was obviously very difficult, but the judge did his best to ascertain them. He had, before his accident, discussed with his brother what they would each want if either of them was on a life support machine following a car crash. Archie had said “I wouldn’t want to leave Mum and I would try to get out of bed.” It is one thing for a healthy child to express such a wish in the abstract; it is another to assume that that is what the same child would still wish if he had the understanding that his remaining existence would be one of total unconsciousness in which he would have no hope of ever getting out of bed, or of seeing or hearing his mother again, and in which his only future would be one in which his organs were progressively failing.
His mother – and who would know him better? – said, “I think he would want me to fight for him; for time… think he would be saying I’m going to get there, don’t give up on me. That’s the fighting spirit. He wouldn’t give up… no way”.
The judge did not altogether discount this evidence which pointed, if not decisively, towards a boy who would want his medical treatment to be continued as long as possible, but he noted that:
“… I am required to confront the compelling medical reality that Archie no longer has the agency to fight. His bodily autonomy has been devolved to the clinical machinery, medication, and nursing care.”
I can understand why Archie’s parents would not find this a very persuasive argument. Anyone in a coma has lost both “agency” and “bodily autonomy.”
It was in the next paragraph of Hayden’s judgment that perhaps the main reason for his decision emerged:
“When determining his best interests, I must have regard to the range of Archie’s needs and wishes. I must also confront the importance of protecting his dignity.” [My emphasis]
Reading the judgment as a whole it is clear that the judge regarded the loss of “dignity” that further medical interventions would entail as one of the most powerful arguments in favour of the discontinuance of treatment. He spelt it out in a single sentence almost at the end of the judgment:
“Where, as here, the treatment is futile, it compromises Archie’s dignity, deprives him of his autonomy, and becomes wholly inimical to his welfare.”
Archie was unconscious and insensate, so to my mind it made little sense to say that further treatment would deprive Archie of “autonomy.” You cannot be deprived of something you no longer possess. And to say that futile treatment was “wholly inimical to his welfare,” is not really an argument so much as a statement of his conclusion.
However, the judge faced head on what he meant by “dignity.”
He cited one of his own recent judgments, North London Clinical Commissioning Group v GU,  EWCOP 59.
Thus, whilst there is and can be no defining characteristic of human dignity, it is clear that respect for personal autonomy is afforded pre-eminence. Each case will be both situational and person specific. … The forensic approach is ‘subjective’, in the sense that it requires all involved, family members, treating clinicians, the Courts to conduct an intense focus on the individual at the centre of the process. Frequently, it will involve drilling down into the person’s life, considering what he or she may have said or written and a more general evaluation of the code and values by which they have lived their life.”
So far so understandable. “Respect for personal autonomy,” said the judge, “is afforded pre-eminence.” GU was an adult who had expressed strong and clear wishes not to live life as a burden to others. He had said things like ““if I do not have my mental faculties there is no reason for me to be here”. The “intense focus” that Hayden had conducted on Archie and his family tended if anything towards the opposite conclusion: that he would have wanted treatment to continue whilst any chance of life remained.
Respect for GU’s personal autonomy meant giving overwhelming weight to his previously expressed wishes. Yet respect for Archie’s personal autonomy meant not doing so.
There were good reasons to draw a distinction: GU was an adult, Archie was a child who could not be assumed to foresee a clear understanding of the position in which he was to find himself, and in any case his wishes were far less clearly expressed than those of GU. Even so, the expression “personal autonomy” appears to have meant different things in each case. That suggests it might be a rather shaky foundation upon which to build the concept of dignity.
Hayden cited a further passage from the same judgment. Was it possible, he had wondered, to derive “unifying principles underpinning the concept of human dignity”? He thought that it was:
“The following is a non-exhaustive summary of what emerges:
i. Firstly, human dignity is predicated on a universal understanding that human beings possess a unique value which is intrinsic to the human condition;
ii. an individual has an inviolable right to be valued, respected and treated ethically, solely because he/she is a human being;
iii. human dignity should not be regarded merely as a facet of human rights but as the foundation for them. Logically, it both establishes and substantiates the construction of human rights;
iv. thus, the protection of human dignity and the rights that flow therefrom is to be regarded as an indispensable priority;
v. the inherent dignity of a human being imposes an obligation on the State actively to protect the dignity of all human beings. This involves guaranteeing respect for human integrity, fundamental rights and freedoms. Axiomatically, this prescribes the avoidance of discrimination;
vi. compliance with these principles may result in legitimately diverging opinions as to how best to preserve or promote human dignity, but it does not alter the nature of it nor will it ever obviate the need for rigorous enquiry.”
But however good this may be as a summary of why a person’s dignity should be protected in law, it still does not define what dignity actually means.
To a judge the giving of futile and invasive treatment to a patient who is clearly either dead or dying may obviously seem to be “undignified.” To a parent desperate for every minute of their child’s life the withdrawal of life-sustaining treatment in the certain knowledge that his death will be hastened is just as obviously undignified. Both can say with equal justification that they are seeking to preserve the child’s dignity, and neither can be said to be wrong.
So I am not sure that protection either of Archie’s autonomy or his dignity can carry the weight put on them by the judge.
This does not mean that Hayden was wrong in his conclusion, or in all the reasons he gave for reaching it. He quoted the words of Lady Hale in Aintree University Hospitals NHS Foundation v. James  UKSC 67,
“Hence the focus is on whether it is in the patient’s best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it.”
This, it seems to me, goes to the heart of the issue. Unless consent can be presumed, medical treatment is unlawful. If a patient is too ill to consent, then it is unlawful unless someone consents on their behalf. In the case of a child that person is usually a parent, but if the issue is raised before the court the judge must decide. If the view of the judge is that the medical treatment can bring no conceivable benefit to the patient then it is futile, and thus (as Lady Hale pointed out) unlawful. There must always be a strong presumption that the continuation of life, even for a short time, is not futile; but if the evidence is that any remaining treatment will simply extend a life devoid of consciousness and with no prospect of recovery, it is of no benefit to the patient.
It was impossible to see and hear Archie’s tearful mother outside the London Hospital earlier today without wondering whether there was something that the judge could have done to prevent or alleviate her grief. Could he have refused the hospital’s request to cease treatment? Possibly, but for how long should such futile treatment have been continued? For weeks? Or months? Or until Archie was unquestionably dead at some indefinite point in the future? Could he have authorised the transfer of Archie to a hospice? Possibly, but the transfer itself would have been unnecessary from Archie’s point of view and might well have led to a still more distressing death during the transit. Sometimes law is as powerless as medicine to prevent a child’s death. Catastrophic though the outcome has been, by the time the courts were involved catastrophe could not be averted. One may disagree with some or all of Hayden’s judgment but no-one reading it could reasonably consider it callous or unsympathetic. It is patently the product of the most anxious thought about which was the least bad of two terrible outcomes.
Further treatment of Archie was futile. Mr Justice Hayden was right to decide that the time had come for it to stop. Devastating though it was for Archie’s beloved family it was the correct decision.