After Indi Gregory's tragic death, an urgent review of end of life decisions is needed

The series of judicial decisions which have led to the tragic death of little Indi Gregory this Monday night have a number of deeply disturbing features.

Mr Justice Peel has described the medical evidence as "unanimous and clear" in saying that Indi's condition was hopeless. However, that unanimity and clarity was achieved artificially by excluding any dissenting expert evidence. Indi's father was refused permission to instruct his own medical experts. He and his lawyers nevertheless obtained opinions of several eminent experts, including those with experience and expertise in Indi's extremely rare mitochondrial disease which Queens Medical Centre lacked, and who disagreed with the hopeless prognosis given in Nottingham.

Having examined all medical records, a cardiologist expert said that Indi's clinical problems were caused by her treatable heart condition, and could be fixed by a non-invasive, pain-free procedure, a right ventricular outflow tract stent, which would enable her to live without life support. A neurologist – the only neurologist who considered the case - agreed that "the existing damage to Indi's brain is not such as to deprive her of a reasonable quality of life".

All that evidence was summarily brushed aside. The Courts even refused to admit it, on the grounds that it already had the evidence of the treating consultant, who had widely consulted with those he thought appropriate, so the opinions of any external experts were "unnecessary".

This view of fair trial (strongly endorsed by the Court of Appeal while refusing permission to appeal) reduces the role of the Court to a mere formality of rubber-stamping the decision of the treating doctor.

Secondly, the Courts have once again usurped the parental right to choose the doctors for their sick child. Nobody was trying to force the doctors in Nottingham to act contrary to their judgment. However, a different – and more expert – paediatric hospital, Bambino Gesu in Rome, proposed an alternative treatment plan, fully funded by the Italian government, which gave Indi a chance to survive and to improve.

The Courts decisively refused that, in favour of withdrawing treatment and an inevitable death in Nottingham. The question raised in the case of Charlie Gard six years ago, and a number of families since, remains unanswered: what right does the British state have to interfere in the parental choice of a hospital for their child at all, let alone to do so with the inevitable consequences of enforcing death?

Thirdly – again, not for the first time – the Court of Appeal has chosen to disregard this country's international law obligations. In Archie Battersbee's case, the Court decided to ignore the interim relief granted by the UN Committee on the Rights of Persons with Disabilities, and to proceed to withdraw life sustaining treatment without waiting for the UN to consider the case, as required by the UN Convention.

This time, the same Court, two of the three judges being the same (Lady Justice King and Lord Justice Moylan), volunteered a derisive attack on the Italian judicial decision to transfer Indi to Rome, and the request made by the Italian authority under the 1996 Hague Convention, which forms part of UK law as well as international law.

Indi had been granted Italian citizenship in addition to her British citizenship; an Italian hospital offered her treatment while a British hospital offered her a pathway to death; British and Italian judges had reached opposite conclusions about her best interests.

One would think it entirely right and proper to resort to a Convention specifically designed to resolve situations of this kind by cooperation. Yet the Court of Appeal (who did not even have jurisdiction to consider that request) attacked it as "wholly misconceived" and "clearly contrary to the spirit of this important international convention". Is this really upholding the rule of law?

Fourthly, the final judgment of the Court of Appeal included what can only be described as an intemperate attack on Indi's father and his lawyers for attempting to challenge the original decision on Indi's best interests in a series of appeals and applications, and the delay in removal of life support resulting from "the parents exercising their legal rights to the very fullest extent, at least".

Then there was a thinly veiled threat expressly directed at the lawyers: "The highest professional standards are rightly expected of lawyers practising in this extremely sensitive area.   The court will not tolerate manipulative litigation tactics designed to frustrate orders that have been made after anxious consideration in the interests of children, interests that are always central to these grave decisions."

Serious allegations of professional impropriety are insinuated here in a very nebulous form; but criticism of this kind by three Court of Appeal judges may amount in itself to serious professional trouble for the parents' lawyers involved. What can be wrong with exercising one's legal rights to the very fullest extent?

Most parents defending their child's life would naturally want to do that. Their lawyers' job is to help them to do that. Yet the Court of Appeal is suggesting that, in a case of this kind, high professional standards require parents' lawyers not to persevere but to give up the struggle at an early stage; and makes a threat of severe censure for doing anything different.

The 'high professional standards' of the legal profession in fact require lawyers to represent their clients' interests "fearlessly". With these words the Court of Appeal appears to be pressing for the opposite. The 'legal speak' of the judges is carefully chosen and the judges know the impact their words will have on the lawyers in the room.

Finally, perhaps the common denominator of all these problems is the extreme haste with which the courts press to conclude every stage of the process. Initially, the NHS Trust tried to persuade the Court to make an urgent decision within just a couple of days after the application was first served on the parents.

There followed a series of short adjournments to avoid manifest unfairness of leaving the family without lawyers, and after the decision was made, short 'stays of execution' to enable appeals. Yet, the system appears to begrudge the family every extra day of Indi's life. That is something that does not go well with justice.

The system of 'end of life' decision-making in this country has gone terribly amiss, resulting in trauma and injustice to families in one case after another. An urgent and comprehensive reform of that system should now be a priority for the Parliament.

Andrea Williams is chief executive of Christian Concern.

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