DOMINIC LAWSON: After Archie Battersbee, we need to find a better way to handle these tragic cases

When did Archie Battersbee die? The file states that he died on Saturday at 12.15 pm, fifteen minutes after his ventilator was switched off by the care team of the Royal Family. London Hospital in East London.

But in the view of the doctors involved, the 12-year-old boy had been “brain-stem dead” since shortly after they started working for him in April. He had been found unconscious at home by his mother, with a ligature around his neck. Archie never regained consciousness: the fatal result, apparently, of pursuing some sort of social media challenge.

Since then, there have been four months of legal battles that have extended not only to the Supreme Court and the Court of Appeal in this country, but also to the European Court of Human Rights and even the United Nationswhile Archie’s parents, Hollie Dance and Paul Battersbee, battled the hospital’s request to disconnect his life support systems — and ultimately have their son moved to a hospice to die “away from the machines.”

How can the hospital both ignore the parents' desire that life support systems be maintained, insist that all treatments be discontinued - and yet complain that 'moving Archie to a hospice' would have been an unacceptable 'risk' to his life?

How can the hospital both ignore the parents’ desire that life support systems be maintained, insist that all treatments be discontinued – and yet complain that ‘moving Archie to a hospice’ would have been an unacceptable ‘risk’ to his life?

It’s easy to see why Archie’s parents fought like tigers to keep his livelihood from being removed. He would have felt warm, his face would have been its normal color, and his chest would have risen and fallen, just as if he had breathed normally.

Disturbing

This was explained shortly before his death by a palliative care physician, Rachel Clarke, on her Twitter feed.

But, continued Dr. Clarke, the court documents revealed that Archie “does not have blood flowing through his brainstem, his brainstem is necrotic and has been pushed out of the skull into the spine.” She concluded that this was “overwhelming additional evidence to conclusively suggest that Archie is brain dead.”

So far this all seems logical to me. But then Dr. Clarke the hospital’s refusal — bolstered by a final Supreme Court ruling — to allow Archie to be taken to a hospice.

Such a transfer, she said, would be “so risky… attempting to move him could cause his death in transit.” Or, in the hospital’s own words: ‘Transferring him, even if it is only a short distance, carries a great risk.’

Wait a second. How can the hospital both ignore the parents’ desire that life support systems be maintained, insist that all treatments be discontinued – and yet complain that ‘moving Archie to a hospice’ would have been an unacceptable ‘risk’ to his life?

Besides, if they were right that he was “brainstem dead,” what more damage could the boy have done by taking him to a hospice?

mr. Justice Hayden, one of the judges involved in this harrowing trial, stated that Archie was “near dead” and “beyond pain.” So it is certainly nonsensical to suggest that any ‘suffering’ would have been caused by such a transfer. But pain is not just physical. There is such a thing as mental pain – otherwise known as anxiety.

The people who felt that fear most were Archie’s parents. This was apparently not a consideration for the courts: they supported the hospital’s view that its interpretation of Archie’s “best interest” should be supported.

This is in accordance with the law, which rightly puts the best interests of the child first (for example, as a last resort, ensuring that the child of Jehovah’s Witnesses receives a life-saving blood transfusion, against the wishes of parents who oppose such a procedure).

I recall an earlier case, four years ago, chaired by Mr Justice Hayden, involving Alfie Evans, a child in the care of Alder Hey Children's Hospital in Liverpool.  There, too, the parents fought the medics' request to have Alfie's feeding tube and ventilator removed, after which he would die.

I recall an earlier case, four years ago, chaired by Mr Justice Hayden, involving Alfie Evans, a child in the care of Alder Hey Children’s Hospital in Liverpool. There, too, the parents fought the medics’ request to have Alfie’s feeding tube and ventilator removed, after which he would die.

But, as I said, if the court and hospital found Archie to be ‘near dead’, then he had no more ‘interests’. At this point it was perverse to nullify the wishes of his parents, the people who gave him life and loved him.

However, the courts argued that what they called Archie’s “dignity” still needed to be reported. I don’t see how it would have been any less “dignified” if his life had ended on the way to hospice, if it had happened as a result of granting his parents’ dying wish.

This is not the slightest criticism of the efforts made to care for Archie over many months, by the nurses in the intensive care unit at the Royal London, who deserve none of the mistreatment directed against them.

It is clear from the court documents that they were upset by the hopelessness of his condition and of their work for him. I can imagine that.

Honestly

The parents’ lawyer, Ian Wise QC, argued that ‘the nurses’ reaction should not play a role’ in the court’s decision. Judge Hayden, in supporting the request to remove life support, stated, “With regard to him, I disagree.”

This also seems strange. It’s completely understandable that the nurses were deeply discouraged at the prospect of continuing to care for Archie in such a hopeless situation; but if only the best interests of the child count, as the law states, of what significance are the nurses’ feelings? It would have been fairer if the hospital had said, “We have a lot of demands on our services, and on our nurses: we have to prioritize the cases where we can do something good.”

But that would have been less successful in a court that prefers to disguise its rulings in meaningless concealment about ‘dignity’.

I recall an earlier case, four years ago, chaired by Mr Justice Hayden, involving Alfie Evans, a child in the care of Alder Hey Children’s Hospital in Liverpool. There, too, the parents fought the medics’ request to have Alfie’s feeding tube and ventilator removed, after which he would die.

Bambino Gesu Hospital in Rome offered to continue caring for the child – at no cost to British taxpayers. But the judge refused, stating both that Alfie’s brain had been “wiped out… it’s almost completely water” and that if he moved to Italy it would cause him further suffering.

I wrote at the time: ‘Both statements cannot be true at the same time.’

I did this after consulting with Dr. Rajesh Munglani, a friend who happens to be this country’s leading authority on pain and author of numerous articles on the subject. He explained that “suffering” is a higher cognitive function, just not experienced by people in the circumstances of Alfie Evans or Archie Battersbee.

conflicts

Over the weekend, I raised the issues of Alfie and Archie with Jeremy Hunt, the former Secretary of Health and now chairman of the House of Commons’ Health Select Committee. He told me such cases were ‘the worst of NHS paternalism’ and added: ‘I will ask my colleagues to consider whether we should look into this as part of a future inquiry.’

The need for such an investigation is also urged by the leading expert in this field who sits in the Senate. This is Ilora Finlay, who is not only a member of the House of Lords but also a professor of palliative medicine at Cardiff University.

Lady Finlay argues that it would be much less of a burden for all concerned if there were a system of ‘independent mediation’ to deal with such conflicts between families and the NHS.

“Nobody wants to go to court,” she said. ‘The parents don’t want to go to court. The doctors don’t want to be in court. Hospital management does not want to pay legal fees and appear in court. We need to find a better way to handle the really difficult communication when there’s a difference of opinion about how the child is doing.’

Lady Finlay also supported the idea of ​​’Charlie’s Law’, a campaign launched by the parents of Charlie Gard, who died at 11 months in 2017, after a lengthy legal battle with their son’s doctors at Great Ormond Street Hospital.

It had refused to allow the child to be transferred to an American hospital that had offered to treat him – a refusal again supported by British courts. The purpose of such a law would be to give parents more say in such extreme cases.

I agree: we can’t go on like this. There must be a better way.