Figures show that there have been 22 occasions in the last five years where doctors have disregarded parents’ wishes and petitioned the courts to say that the best interests of seriously ill children is to die – including the recent case of Tafida Raqeeb. Pavel Stroilov, Consultant to the Christian Legal Centre, came under fire for his involvement in the controversial case of Alfie Evans. Doctors bypassed the wishes of Alfie’s parents and took him off life support in April 2018, condemning the 1-year-old to death despite alternative healthcare available to him in Italy. Pavel now writes of his own experience supporting Alfie and his parents; he says the victory in Tafida’s case does not go far enough because it still endorses the principle that the state gets to decide whether a child lives or dies.
In April last year, I spent a terrible week at Alder Hey Children’s Hospital in Liverpool, watching the lengths to which the British state went to to protect 1-year-old Alfie Evans’s ‘right to die in dignity’. By the orders of Mr Justice Hayden – upheld by the judicial hierarchy all the way up to Baroness Hale – it was against Alfie’s best interests, and therefore illegal, to prolong his life by artificial ventilation. So the hospital was crowded with about a hundred police officers, guarding the child against any illicit attempts by his family or anybody else to smuggle oxygen to his bedside.
On one of those nights, I was woken up in my hotel by a panicked phone call and told that Alfie was suffocating. I rushed to the hospital, through the back doors, and thus found myself on the inside of the police cordon which held off a few ‘Alfie’s Army’ activists trying to get into the hospital through the front doors. Someone threw a small package at me over the heads of the police; I picked it up and ran away towards the staircase to Alfie’s ward. It turned out to be an oxygen mask. I was stopped by the next police cordon near the entrance to the ward, but then covertly passed that mask to someone from the family in the hope that they could smuggle it in… Adventures of this kind were our routine during the five days and six nights after Alfie’s life support was switched off – until he finally suffocated in the early hours of 29 April 2018.
A year and a half on, this September, I sat through a one-week trial in the Royal Courts of Justice in a very similar case. Like Alfie, 4-year-old Tafida Raqeeb has serious brain damage, and doctors predict she will have to stay on life support for the rest of her life. Even though Tafida might well survive for another 10 to 20 years, the NHS contended, just as in Alfie’s case, that her ‘quality of life’ would be so poor that it was ‘futile’ to prolong it by giving life support. Tafida’s parents, like Alfie’s, have strong religious beliefs which do not accept this kind of logic. They, too, have found an Italian hospital which is prepared to provide treatment which the British hospital denies to their child. They, too, wanted to ‘self-discharge’ her from the British hospital and fly to Italy; the hospital, again, refused to allow that; and made an urgent application to Court for an order prescribing that it is in Tafida’s best interests to die here and now.
In a lengthy judgment handed down earlier this month, Mr Justice Macdonald ruled in favour of the parents. It is not in Tafida’s best interests to die. It is in her best interests to be taken to Italy.
The judgment still jealously guards the right of the Court in principle to decide whether it is in a child’s best interests to live or die. It denies that the parents have a right simply to take their child from a hospital which is unwilling to provide treatment, and take her to another hospital in Britain or abroad. It endorses the principle that, whenever it is “difficult or impossible” for a child “to derive benefit from continued life”, it may be in their best interests to switch off life support. Those matters, it says, are for the Court alone to decide. In this particular case, the Court has decided to allow Tafida to live.
Stone in a glass house
Terrible cases of this nature – where the NHS asks the Court to overrule the parents and order that a child must die – are much more frequent than most people know, having only heard about Charlie Gard and Alfie Evans. Those with a special interest in this area may also recall Isaiah Haastrup, and have now followed Tafida’s case. Those cases are just the tip of the iceberg. We only know about them because the parents of those children began a campaign on social media before the NHS brought the case to court. Many other similar cases have been heard and resolved behind closed doors, or with reporting restrictions which prohibit revealing the identity of the child, parents, medics involved in the case, often the identity of the hospital itself, and all sorts of other details. In response to my Freedom of Information request, Cafcass recently informed me that since 2015 it had been involved in no fewer than 22 court applications for withdrawal of life-sustaining treatment from children. Only half of those cases featured in the law reports; fewer still in the general media.
The recent decision about Tafida is the first reported case since 2006 where the parents won. Many will praise Mr Justice Macdonald for his wisdom and mercy. Fewer, however, will appreciate just how much courage it has required to refuse to sign the death sentence he had been asked for.
45-year-old Alistair MacDonald QC was appointed a judge of the Family Division of the High Court on 2 June 2015. Only three weeks later, he had an urgent phone call whereby he was required to condemn an ill child to death. A 7-year old girl, “Child Y”, had suffered two cardiac arrests; on both occasions, she was successfully resuscitated and given artificial ventilation; but the experience apparently caused permanent damage to her brain. The doctor treating her at King’s College Hospital, “Doctor B”, had a “strong view” that if her condition deteriorated, she should not be given artificial ventilation again; and if she had another heart attack, she should not be resuscitated. Instead, he recommended she be given sedatives which, it was acknowledged, would “shorten her life”. Her breathing deteriorated on 23 June, and it was thought she would not survive the night without artificial ventilation; the parents begged for it; the Hospital refused, and made an urgent application to the Court. The ‘hearing’ took place in the form of a phone call to the judge in the evening of 23 June. The Hospital was represented by an experienced barrister. The girl’s father represented himself and her mother. He spoke English with a strong accent, but there was no time to arrange an interpreter, let alone a lawyer. Doctor B was the only medical witness. By 10 pm, Mr Justice MacDonald approved the order and it was all over. (There was a further proper hearing on 2 July, with a barrister to represent the parents, who by that time had given up resistance).
More recently, it was also Mr Justice Macdonald who, in January 2018, authorised King’s College Hospital to withdraw life support from 11-month-old Isaiah Haastrup – on the usual grounds that his life on life support, unconscious and unresponsive, was so poor in quality that it was futile to continue saving it. Isaiah was extubated and died a few hours later.
Many of Mr Justice Macdonald’s fellow-professionals – his peers in the courtroom next door, his superiors in the Court of Appeal, lawyers in front of him, doctors in the witness box – have similar experiences. So, whenever the uncomfortable topic of a child’s life and death is brought up, their collective reaction is rather defensive. There is an unwritten rule in that Court and around it against ‘emotive’ terms such as “death”. Some of us have experienced quite a backlash from the united front of NHS-worshippers for failing to find a less emotive name for it. Indeed, almost anything being said in favour of the child’s survival is taken as an insulting hint that the doctors and lawyers in front of you are monsters. As Mr Justice Hayden bellowed at Paul Diamond when, representing Alfie Evans’s parents, he appealed to the principle of “common humanity” – “You do not have the moral high ground in this court; nobody does”.
With this history, and in this environment, it is a lot easier for the judge to say that he cannot argue with doctors about medicine, and that the parents’ view is so inevitably coloured by emotion that it cannot be objective. However carefully the judgement of Macdonald J is worded, once it sides with the ‘emotional’ parents against the ‘objective’ doctors, it inevitably calls into question a catalogue of earlier judgments – including his own. Because of that, it is brave.
This judgment is a stone thrown in the glass house of the High Court’s Family Division. Thrown very carefully, along a well-calculated trajectory, but a stone in a glass house nonetheless.
What made him do it?
Alfie Evans lost his life after it was judged ‘futile’. There is an element of ironic justice in the fact that Alfie will now be remembered long after all memory of his judges, medical and legal, is gone. The same can be said of Charlie Gard. At their tender age, they led armies and fell in battle, defending the civilisation of caring for the weak instead of killing them. That battle still goes on, and now we see the tide turning. The lives dismissed as ‘futile’ have made history.
We owe it to Charlie’s and Alfie’s brave families, and to their supporters in Charlie’s Army and Alfie’s Army, that this terrible court practice finally began to escape from the comfortable secrecy of the Family Division into the glare of an open public debate. For the first time, the cases were widely discussed outside the narrow secretive circle of professionals, so careful not to offend one another, patronising the grief-stricken parents and dismissing their views as understandable but unobjective. For the first time, the very axioms of those cases were tested in the court of public opinion; and were found to be wrong.
After all, the problem is fairly simple to anyone except medical ethicists and those who listen to them. It cannot be right to condemn children to death and enforce those orders by force. It cannot be right for the state to prohibit parents from saving their child’s life. The question is not a ‘pragmatic’ one of whether the child would be better off in the afterlife or living on life support in this murderous world. The question is what we do to very ill children in our midst. Thankfully, ‘put them to death’ is still not an acceptable answer outside a narrow circle of professionals.
This is not how Mr Justice Macdonald puts it in the judgement; but at least, by the time he heard this case, he had been made acutely aware that this view exists, and of various arguments in support of it. By now, it has become important – if only to justify the Court’s power to decide the child’s life and death – to try and prove to the public that the Family Division is not simply an industry of infanticide where the chance of survival is zero.
The rule of judges vs the rule of law
Coincidentally or providentially, Tafida’s case became strangely mixed up with another great legal controversy which unravelled this September. I was in Court on 11 September when Mr Justice Macdonald, back from lunch, smiled as he said: “So, Mr Sachdeva, where were we? Ah yes, you were just saying that matters of high policy are not justiciable in courts of law.” That moment, exactly mid-way through the trial, I saw the first faint dawn of hope. No sane person can be cheerful when he is about to send a 4-year-old girl to her death.
That was the day when Scotland’s Court of Session ruled the prorogation of Parliament to be unlawful and void. That decision, later upheld by the Supreme Court, caused more popular excitement than the licence to live granted to Tafida; but the controversies raised by those cases are not dissimilar. By what right do unelected judges assume the power to govern the country? By what right do they assume the power over life and death of its citizens?
Upon his recent retirement from the Supreme Court, the judge universally acclaimed as the country’s cleverest lawyer, Lord Sumption, gave a lecture about ‘Law’s Expanding Empire’ encroaching upon people’s liberties. Among other things, Lord Sumption discussed the case of Charlie Gard:
“there are two striking features of this story. The first is that, although the decision whether to continue treatment was a matter of clinical judgment, the clinicians involved were unwilling to make that judgment on their own, as I suspect that they would have done a generation before. They wanted the endorsement of a judge. This was not because judges were thought to have any special clinical or moral qualifications that the doctors lacked, it was because judges have a power of absolution…
“The second feature of the case is perhaps even more striking. The Courts ruled that not only should the hospital be entitled to withdraw therapeutic treatment but the parents should not be permitted to take the chance of a cure elsewhere… The parents’ decision was, so to speak, nationalised.”
This month, Baroness Hale – who as the President of the Supreme Court had upheld the death sentences against both Charlie Gard and Alfie Evans – devoted a lecture of her own to a polemic against Lord Sumption. Her Ladyship promptly seized upon Tafida’s survival to argue that nothing is wrong with the system. The cases of Charlie, Alfie and Tafida, she said,
“illustrate well just how the law should work – resolving disputes according to clear legal standards in the light of all the available evidence. Nor indeed does Lord Sumption say that the Charlie Gard case was wrongly decided. He seems instead to lament that it was decided at all. But of course in disputed situations, not to decide is in itself a decision. Feminists have long complained, for example, that the law’s reluctance to intervene in the ‘enclosed domain of the home’ in reality and in law legitimated the power of a dominant abuser. It was for the same reason that the law began to intervene to protect the interests of children.”
Her Ladyship argues that, had the hospital taken its own decision about Charlie Gard instead of going to court, “of course, the outcome would have been the same unless the parents took the case to court”. That is simply not true (and Her Ladyship knows that, having personally taken the ultimate decision condemning Charlie Gard to death). Had the doctors simply refused to provide the treatment, without going to court, his parents would peacefully take Charlie to another doctor in America who was willing to treat him. It was only Lady Hale, and other judges, who had (or usurped) the power to prevent that and chose to do so. Whatever the merits of the argument, they cannot now hide from responsibility behind the backs of doctors.
Equally false is Lady Hale’s assertion that Charlie Gard’s case was “a perfectly standard case of the application of a clear legal rule to a justiciable dispute between individuals”. A judge’s unlimited, unfettered power to do anything he thinks to be in the child’s best interests is the opposite of “a clear legal rule”. It is, rightly or wrongly, an absolute power of a personal ruler.
Where is the “justiciable dispute between individuals” in those cases? Doctors are simply doing their job – providing a particular service to the public. If a stranger on the street starts a dispute with you about the upbringing of your child, you tell him where to go, and that is the end of the dispute. If a hairdresser starts a dispute with you as to which hairstyle is in the best interests of your child, it is not a justiciable dispute. You, and not Lady Hale, will decide whether to heed his advice, or keep arguing, or go away to another hairdresser. How, in principle, are doctors different? Is it just because so many judges, including Lady Hale, probably cannot be bothered about children’s hairstyles, but are keenly advancing the ‘right to die’ for the terminally ill and the severely disabled?
Discussion of those cases forms only a small part of Lady Hale’s lecture. In the last autumn of her reign, at the peak of her worldly fame, she boldly lays bare her vision of the past, present and future of the Constitution. Armed with the sword of the revolutionary judgment on the prorogation of Parliament, and the shield of the merciful judgment upon Tafida, she defends – but does not deny – the arbitrary power-grab by this generation of judges.
She effectively admits that she and her colleagues simply make the law up as they go along. She claims the same thing had been done since time immemorial. In her view, the notion that Parliament makes laws, and the judges merely interpret them by ascertaining Parliament’s intention, has always been “a fiction”. Likewise, the notion that the judges ‘discovered’ the Common Law rather than made it up is “the now exploded fairy tale”.
“…And the reason for the fiction was the same – to disguise the very real power that the judges were exercising.”
Modern theories of jurisprudence, written by legal academics such as Lady Hale, have horrified me ever since I studied law at King’s College London about a decade ago. They are simply a justification for a political tyranny of one sort or another. They are very different from the views of judges of earlier centuries, who developed the Common Law based on Christian beliefs such as that all men are created equal; that they are endowed, by their Creator, with certain unalienable rights; that Christianity is part and parcel of the law of England; and that thou shalt not kill. Those judges ‘discovered’ the Common Law in reason and conscience. The result of that was a constitutional and legal system that was unrivalled in the history of mankind. That system is now being discredited and destroyed by power-hungry legal theorists in its highest offices, who mock the British Constitution as ‘an exploded fairy tale’. As long as they adhere to their philosophy, no one’s liberty or even life are safe.
 Kings College Hospital NHS Foundation Trust v MH  EWHC 1920 (Fam), 2015 WL 3953044.