After Archie, we must find a better way of handling these tragic cases

WHEN did archie Battersbee die? The record will state that his death occurred at 12.15 pm on Saturday, a quarter of an hour after his ventilator was switched off by the care team at the Royal london Hospital in East london.

But in the view of the doctors involved, the 12-year-old boy had been ‘brain-stem dead’ since soon after they had begun looking after 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, extending not just to the High Court and Court of appeal in this country but also the European Court of Human Rights and even the United Nations, as archie’s parents, Hollie Dance and Paul Battersbee, fought the hospital’s application to have his life-support systems unplugged – and, ultimately, to have their son moved to a hospice to die ‘away from the machines’.

Support

It is easy to understand why archie’s parents fought like tigers to prevent his lifesupport being removed. He would have been warm to the touch, his face would have had its normal colour, and his chest would have risen and fallen just as it would if he had been breathing normally.

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

But, Dr Clarke went on to point out, the court documents revealed that archie ‘has no blood flow through his brain stem, his brain stem is necrotic and has been pushed out of the skull into the spine’. She concluded that this was ‘overwhelming additional evidence to suggest conclusively that archie is brain dead’.

So far, this all makes sense to me. But then Dr Clarke supported the hospital’s refusal – backed by a final High Court judgment – to allow archie to be taken to a hospice.

Such a transfer, she said, would be ‘so risky… attempting to move him might trigger his death in transit’. Or, in the hospital’s own words: ‘Transferring him even a short distance involves significant risk.’

Hold on a moment. How can the hospital both override the parents’ desire that lifesupport systems be maintained, insist that all treatment is terminated – and yet still complain that ‘moving archie to a hospice’ would have been an unacceptable ‘risk’ to his life?

Moreover, if they were right that he was ‘brain-stem dead’, then what possible further harm to the boy could have been done by moving him to a hospice?

Mr Justice Hayden, one of the judges involved in this distressing process, declared that archie was ‘moribund’ and ‘beyond pain’. Surely, then, it is 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 anguish.

The people who were feeling that anguish most intensely were archie’s parents. This, apparently, was not a consideration for the courts: they supported the hospital’s view that its interpretation of archie’s ‘best interests’ should be supported.

This is in accordance with the law, which rightly prioritises the child’s interest (for example, in the extreme case of making sure that the child of Jehovah’s Witnesses gets a life-saving blood transfusion, against the wishes of parents opposed to the procedure).

But, as I say, if the court and the hospital believed archie to be ‘moribund’, then he no longer had any ‘interests’. at this point it was perverse to override the wishes of his parents, the people who gave him life and loved him.

The courts, however, claimed that notice still needed to be accorded to what they termed archie’s ‘dignity’. I cannot see that it would have been any less ‘dignified’ for his life to have ended en route to the hospice, if that had happened as a consequence of acceding to his parents’ final wish.

This is not the slightest criticism of the efforts that were made in looking after archie for many months, by the nurses in the Royal london’s intensive care unit, who deserve none of the abuse that has been directed at them.

It seems clear from the court documents that they had become distressed by the hopelessness of his condition, and of their work for him. I can imagine that.

The parents’ lawyer, Ian Wise, QC, argued that ‘the reaction of the nurses should play no part’ in the court’s decision. Mr Justice Hayden pronounced, when supporting the application to remove life support: ‘With respect to him, I disagree.’

This also seems odd. It is absolutely understandable that the nurses had become deeply dispirited by the prospect of continuing to care for archie in such a hopeless predicament; but if only the interests of the child count, as the law states, of what possible relevance are the feelings of the nurses? It would have been more honest of the hospital to have said: ‘We have many demands on our services, and on our nurses: we have to prioritise the cases in which we can do some good.’

But that would have gone down less well in a court which prefers to cloak its judgments in meaningless cant about ‘dignity’.

Care

I recall an earlier case, four years ago, presided over by Mr Justice Hayden, involving alfie Evans, a child in the care of liverpool’s alder Hey Children’s Hospital. There, too, the parents fought the medics’ application to have alfie’s feeding tube and ventilator removed, at which point he would expire.

The Bambino Gesu hospital in Rome offered to continue the child’s care – at zero cost to the British taxpayer. But the judge refused, declaring both that alfie’s brain ‘had been wiped out… it is almost entirely water’ and that to move him to Italy would cause him further suffering.

I wrote at the time: ‘Both propositions could not simultaneously be true.’

I did so after consulting Dr Rajesh Munglani, a friend who happens to be this country’s leading authority in the field of pain and author of countless papers in this field. He explained that ‘suffering’ is a higher cognitive function, simply not experienced by those in the circumstances of alfie Evans or archie Battersbee.

Inquiry

Over the weekend I raised the cases of alfie and archie with Jeremy Hunt, the former health secretary and now Chairman of the House of Commons Health Select Committee. He told me that such cases represented ‘the worst of NHS paternalism’ and added: ‘I will be asking my colleagues to consider if we should look at this as part of a future inquiry.’

The need for such an inquiry is also urged by the leading expert in this field sitting in the Upper House. This is Ilora Finlay, who as well as being a member of the House of lords is professor of palliative medicine at Cardiff University.

lady Finlay argues that it would be much less tortuous for all concerned if there were a system of ‘independent mediation’ to address 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 doesn’t want to be paying out legal fees and being in court. We have to find a better way of managing the really difficult communication when there is a difference of view over how things are going with the child.’

lady Finlay has also supported the idea of ‘Charlie’s law’, a campaign launched by the parents of Charlie Gard, who died aged 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 infant to be transferred to a US hospital that had offered to treat him – a refusal that was, again, backed by British courts. The purpose of such a law would be to give parents more say in such cases.

I agree: we cannot go on like this. There must be a better way.