I thought I’d experiment with an audio post.
This is closely based on an article that appeared in Quillette yesterday. Be warned: there are no pictures, there is no music (unless you count dogs barking in the background), no gimmicks and no technical wizadry. It’s just me talking for nearly half an hour.
I hope you’ll find it interesting if you haven’t read the article, or at least a cure for insomnia if you have.
Let me know if you think this is a good or a bad idea.
It seems to work on mobile phones, but I’m having some technical difficultites making it play on an ordinary laptop, especially using Firefox
For anyone who would prefer to read, or who is unable to listen, the piece is set out below. I’m doing my best to make the audio work but I think at the moment it’s about 50:50!
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Three days after Tom and Kate Evans abandoned their legal fight, their son Alfie died.
Both parents have shown immense courage over the past months and in the final few days they have demonstrated a quiet dignity as Alfie’s death approached.
Inevitably, as he lay dying many have been moved by his plight. There have been denunciations of the doctors, the judges and the legal system. Ill-informed voices from America have blamed his death on secularism, or the NHS or “government death panels.” Voices from this country have called for an “Alfie’s law” to give parents greater rights over the treatment of their children.
It is at times of the greatest emotion that calls for changes in the law can be at their most seductive, and so it is now. Who, after all, would wish for another case like Alfie Evans or Charlie Gard?
The law, and particularly the legal system, is certainly not faultless but calls to give parents more legal rights over these terrible end of life decisions are fundamentally mistaken.
The key to understanding the case is to grasp one very simple but very far-reaching principle of English law. Once a dispute comes before a court over the care of a child, the Children Act 1989 provides that the welfare of the child is the paramount consideration.
It is not an obscure or difficult concept but its very simplicity means its far-reaching implications are sometimes not appreciated.
In ordinary family disputes it means, for example, that if, after a divorce, there is a question about with whom the child should live, fairness towards the parents is – in itself – irrelevant. A parent’s affair might have broken up the marriage, or his violence might have landed him in gaol. Such behaviour is immaterial except insofar as it may touch on the child’s welfare. The only question for the judge is “where do this child’s best interests lie?”
In “end of life” cases such as Alfie’s, or the similarly tragic case of Charlie Gard which came before the court last year, exactly the same principle applies.
Very often, of course, parents and doctors agree. The answer is often not clear. Medicine is an art as well as a science and there is often great uncertainty. Parents are usually happy to be guided by medical advice, and doctors are prepared to be flexible and to accommodate the views of parents as far as they can. Compromises can often be reached.
There are occasions, however, when a doctor’s professional obligations towards a patient and the parents’ wishes are simply incompatible. Devout Jehovah’s Witnesses, for example, may refuse to give consent to their children having a blood transfusion, a theme that formed the subject matter of Ian McEwan’s novel The Children Act. In such cases the need to save a child’s life will usually over-ride the parents’ wishes to adhere to the terms of their religion.
When doctors and parents cannot agree, unless parents are given carte blanche to do anything they like, someone must decide. The role of the Judge is:
“… to take over the parents’ duty to give or withhold consent in the best interests of the child. It is the role and duty of the court to do so and to exercise its own independent and objective judgment.” [See eg: Kings College Hospital NHS Trust v. Thomas and Haastrup  EWHC 127 (Fam)]
There are some – almost certainly a tiny minority – who hold the view that no matter how onerous or burdensome a life may be doctors should always strive to preserve it for as long as possible. People and organisations who adhere to such a view have featured in Alfie’s case.
Others take the view that occasionally a life, even that of a child, can be so intolerable, or so futile, that medical attempts to eke it out as long as possible are wrong.
Unless we adopt the ultimately cruel position that all life should be extended as long as possible, whatever its quality, someone eventually has to decide when treatment should stop.
Neither the religious or other beliefs of the parents, nor the depth of their love and devotion alter the fundamental question: “what are the child’s best interests?” The law does not permit active euthanasia – whether it should do so is another question – but it does not always require doctors to continue to provide treatment when its only effect is to extend an intolerable or a futile life. Sometimes the best possible medical treatment is palliative, with the aim simply of reducing pain and discomfort. Patients who are able to make their views known can, and often do, tell their doctors to desist from life-saving treatment. Children too young or too sick to voice a wish do not have that option.
Who should speak for the child? The parents will almost always be the child’s strongest advocate, (although the law also provides for the appointment of a “guardian,” an independent voice in court to argue for what he or she perceives as the child’s interests). But just as parents can sometimes be wrong in demanding that treatments (such as blood transfusions) be shunned, so they can also sometimes be wrong in demanding that futile treatment be continued. Such cases are very rare; but to give parents the final say in law is not to uphold the rights of the child, it is to remove them.
In Alfie’s case the question was whether his best interests were served by continuing with life-sustaining treatment, including the provision of artificial ventilation and feeding by means of a tube into the small intestine, or by withdrawing it and concentrating only on palliative care. The former option could have kept him alive in a “semi-vegetative state” almost indefinitely. The latter, predictably, led to his death within a few days.
Since such cases only come before the court when there is an irreconcilable disagreement between parents and hospitals the judge is inevitably being asked by the hospital to do something with which the parents profoundly disagree. Little wonder, then, that parents often feel that their distress over the critical illness of their child is compounded not just by fighting a life and death legal dispute, but also by a growing realisation that their views about their beloved child are accorded no more legal importance than those of the doctors.
In fact, although in principle the judge is not bound by the views of the doctors any more than by those of the parents, in practice the central issues are likely to be matters of medical expertise which the parents will struggle to gainsay. For example, Mr Evans put forward videos of his son yawning as evidence that Alfie still had powers of voluntary movement. The medical explanation was that these yawns were simply reflex actions, consistent with the scans and other evidence that showed that Alfie’s brain had almost entirely wasted away. However kindly and humanely the judge may try to put it, and any fair minded reader studying the judgment of Hayden J will be impressed by the agonised humanity shining through almost every sentence, the views of the parents will in most cases count for less than those of the medical experts.
Many of us will have known close relatives suffering from terminal illness. A few will have endured the unspeakable pain of watching their own children die. To undergo that while simultaneously conducting High Court litigation, with the dawning realisation that the weight of medical expertise favours a course which will hasten your child’s death must be almost unbearable.
They were unrepresented at the original hearing in February. It is not altogether clear why that was so; since the dispute with Alder Hey began they have instructed (according to Hayden J.) “a long succession of lawyers,” but it cannot have made this crucial hearing any easier that they – most of the actual advocacy was done by Mr Evans – represented themselves in court. I have been a barrister for thirty years, and I would still find the prospect of representing a client in a High Court case involving internationally renowned medical experts and opposed by Queen’s Counsel a daunting prospect. For a young couple barely out of their teens to do so in a case of this importance is beyond my imagination. That they did not buckle completely under the pressure is astonishing. In fact the judge was lavish with his praise of how Tom conducted the advocacy:
“[His] presentation of his case was extraordinarily impressive. His knowledge of the paperwork and the medical records was prodigious. His understanding of the functioning of the brain and his exploration of competing hypothesis was remarkable. At one point in the evidence when he had asked a question of particular complexity I asked him if somebody had been providing the questions for him. He told me, entirely convincingly, that he had written it out a moment or two before. His uncle, sitting next to him, confirmed it. … Alfie could have had no more articulate voice on his behalf than his father’s in this Court room.”
Before the case the parents had had solicitors who commissioned several independent expert opinions, all of whom agreed with the doctors at Alder Hey that Alfie’s medical condition was hopeless. His brain had deteriorated to an extent that all agreed was “catastrophic and untreatable.”
One of the independent experts instructed by the family was a Dr Samuels, a Consultant Respiratory Paediatrician. He was asked in evidence about the fact that Alfie appeared on occasion to demonstrate “physiological changes” in reaction to movement, light and sound. There were three possible explanations for this: “basic reflex; seizure related activity; association with discomfort.” It was unclear whether Alfie had sufficient consciousness even to suffer pain, but he certainly lacked any means of demonstrating it if he did.
Another doctor put it this way:
“I believe that is it unlikely that Alfie feels pain or has sensation of discomfort but I cannot be completely certain of this since Alfie has no way of communicating if he is in pain or discomfort. I believe that given Alfie’s very poor prognosis with no possible curative treatment and no prospect of recovery the continuation of active intensive care treatment is futile and may well be causing him distress and suffering. It is therefore my opinion that it is not in Alfie’s best interests to further prolong the current invasive treatment. It would, in my opinion, be appropriate to withdraw intensive care support and provide palliative care for Alfie for the remainder of his life.”
A third doctor thought that although it was unlikely that Alfie could be conscious of pain:
“… as [he] is unable to communicate, it is important to consider whether, despite his inability to respond, Alfie may still have some awareness of pain and discomfort and this should therefore be kept to an absolute minimum considering that he might still be able to “feel” uncomfortable sensation I think it is unlikely that Alfie has any ability to be reassured by the voices and touch of his parents.”
In short, there was a medical consensus that further treatment would be futile and carried at least a small risk that it would be actively painful.
Alfie’s was not even a case like that of Charlie Gard where there was at least a proposal for experimental treatment. Even his parents accepted that no cure and no improvement was possible. Nor, in the main, did they dispute the medical evidence; indeed their own independent doctors agreed with those at Alder Hey about Alfie’s prognosis.
The only real area of disagreement was about what should be done. The parents’ alternative plan was to transport Alfie first to Italy, where he would be kept at the Vatican Bambino Gesu Hospital and from there, if that did not work, he would be flown to Munich where, for a cost of 65,000 Euros (not including transport) he would be subjected to a tracheostomy and a gastrostomy and kept in the Paediatric Intensive Care Unit for 14 days while the parents were trained to manage a home ventilation system. It is unclear from the judgments whether the plan thereafter (assuming Alfie survived the journey) was to remain in Munich, and in any case, as Lady Justice King put it in the Court of Appeal, “Mr Knafler [leading counsel for Mr Evans in the Court of Appeal] was unable to help the court to understand why the father’s proposal involved Alfie being transferred to both Italy and Munich.”
Applying the “best interests” test the judges decided that to fly Alfie around Europe to various different hospitals, to conduct surgery not for the purposes of effecting a cure, but simply to extend his life was not in his best interests. Transport and surgery of the sort proposed was not without its risks, and if indeed Alfie was capable of pain those risks included subjecting him to unnecessary and pointless pain.
Like the case of Charlie Gard last year, Alfie’s case, and the desperation of his young parents, has been ruthlessly exploited by many with their own axes to grind.
An American based pro-life activist called Christine Broesamle contacted Mr Evans early in the year, after reading one of his Facebook posts. Just as her contacts had offered to fly Charlie Gard to Rome, so she said the same thing could be done for Alfie. She also arranged for German and Italian doctors to visit Alder Hey posing as friends of the family. One of those doctors falsely claimed to have seen Alfie’s medical records, then pronounced Alfie “fit to fly” suggesting that he could be prescribed an anti-convulsant which was “entirely contra-indicated by his medical history”. It was a gross breach of professional ethics, nothing less than a publicity seeking subterfuge which unsurprisingly did more harm than good to Mr Evans’s case.
The Evans family were also put in touch with an organisation called The Christian Legal Centre – described in court as “a campaigning organisation” (it campaigns against abortion and gay rights) – which became publicly involved after the parents lost the first two rounds of argument in the High Court and the Court of Appeal, and once the Supreme Court had ruled that it would not conduct a full hearing (although it did give a brief ruling on the basis of the papers alone). At that stage the parents’ legal options in this country would normally have been exhausted.
Associated with the CLC was a man called Pavel Stroilov, a Russian exile who has worked as an adviser to the current UKIP leader Gerard Batten. He is some sort of law student and wrote a letter which said:
“as a matter of law it is your right to come to (the) hospital with a team of medical professionals with their own life-support equipment and move Alfie to such other place as you consider is best for him. You do not need any permission from (the) Hospital or the court to do so.”
This advice was flatly, unarguably wrong.
One of the many rather mysterious things about the case is quite why the Christian Legal Centre needed to rely upon the legal advice of a law student when its own director, Andrea Minichiello Williams, describes herself to Companies House as a barrister (although for some reason she does not seem to be listed on the Bar Council directory of practising barristers). Even if Ms Minichiello Williams’ own legal knowledge is a little rusty, she had available to her the services of a practising barrister, Paul Diamond who for ten years has been “standing counsel” to the CLC. Indeed, as long ago as 2008 Mr Diamond, a sole practitioner who gives his address as a post office box in Cambridge, was paid £100,000 p.a. for his services, which would appear to be something of a waste of money if they relied on the word of a law student instead.
Mr Evans did what was suggested. He turned up at the hospital equipped with a foreign doctor and the staff of an air ambulance and asked to remove Alfie. There was some sort of confrontation, and the Police were called. Back to court the parents went, now represented by Mr Diamond on a “habeas corpus” application that can only be characterised as legally nonsensical – I suppose we can’t blame the law student for that, it must have been Mr Diamond’s idea – which was struck out by both Hayden J. and the Court of Appeal, as it inevitably would be; with remarkable under-statement they described the application merely as “misconceived.” The only rational explanation for bringing such an obviously misconceived application was that it garnered a great deal of publicity for the Christian Legal Centre.
Far from helping the desperate parents it is impossible to view the involvement of the CLC as anything other than exploitative.
The nadir came with the announcement that summonses had been served on doctors at Alder Hey Hospital, charging them with conspiracy to murder: a pure publicity stunt with not even a veneer of legal respectability. Since it is inconceivable that a barrister such as Mr Diamond could advised on such a course, which could have laid Mr Evans open to being sued for malicious prosecution (although I am sure that the doctors at Alder Hey would not dream of doing so), and any lawyer associated with it to be hauled up before his or her professional regulator, we must assume that the advice to issue the summonses came from the law student.
By now there were angry and intimidating crowds outside the hospital, with no thought given to the parents of other sick children, and even less of the doctors trying to treat them. A vicious social media mob whipped itself into action; and as the legal applications became ever more absurd, so the personal abuse of the judges grew.
Hayden J. was described as a “murderer.” He was accused of torture. His face was posted on social media with a Hitler moustache added. His sexuality was mocked. There was a call for him to be hanged.
Through all this, it should perhaps be noted, there has not been a single word of public support from David Gauke the Lord Chancellor. One of the requirements of his job is that he “defend the independence of the judiciary.”
The Pope became involved and granted Mr Evans an audience in Rome. He is said to have arranged for a “military grade” aircraft to be made available to fly Alfie to Italy. It was oddly inconsistent of the Pontiff because His Holiness had himself written a letter to the Pontifical Academy for Life as recently as November 2017 in which he appeared to disapprove of excessive treatments designed to prolong life:
“The growing therapeutic capabilities of medical science have made it possible to eliminate many diseases, to improve health and to prolong people’s life span. While these developments have proved quite positive, it has also become possible nowadays to extend life by means that were inconceivable in the past. Surgery and other medical interventions have become ever more effective, but they are not always beneficial: they can sustain, or even replace, failing vital functions, but that is not the same as promoting health. Greater wisdom is called for today, because of the temptation to insist on treatments that have powerful effects on the body, yet at times do not serve the integral good of the person.”
One could hardly put the case for avoiding pointless surgery more clearly, yet here was the Holy Father seemingly advocating just that for Alfie. If it was anyone but the Pope one might almost accuse him of taking up a bad cause in a quest for popularity.
The granting of Italian citizenship to Alfie was yet another legal non-starter: its ostensible purpose was to persuade the Court that he should be able to travel to Italy as a matter of freedom of movement under EU law. More precious time was wasted while Mr Diamond was criticised by Hayden J. for talking “ridiculous emotive nonsense” and “using the court as a platform for platitudes and soundbites” instead of making proper legal submissions. That was polite compared to his description of Mr Stroilov, who he described as a “fanatical and deluded young man.”
The platitudes and soundbites and ridiculous emotive nonsense were never going to win in court, but they were effective nonetheless; they helped to ensure that Alfie became a cause celebre for still less savoury and scruple free characters on both sides of the Atlantic.
Nigel Farage denounced the proceedings as state sponsored euthanasia, although it was not state sponsored and it was not – even by the strict definition of the Catholic Church – euthanasia. No doubt he too thought it was easier to talk in populist platitudes and sound-bites than actually to address the difficult issues.
Polish, Italian and Spanish social media accounts joined in, and keen not to be left out American politicians too decided to exploit Alfie to make a case, extraordinarily, against “socialized medicine,” ignoring the fact that the outcome would have been identical if Alfie had been in a private hospital.
“Alfie’s parents, Kate James and Tom Evans, wish to seek experimental treatments for what is thought to be a mitochondrial condition. Italy has granted Alfie citizenship and offered to transport him to a Vatican hospital.”
It was fake news of the first order, or what used to be called a lie. There was no experimental treatment on offer, either in Italy or anywhere else.
Cruz developed his theme:
“It is a grim reminder that systems of socialized medicine like the National Health Service (NHS) vest the state with power over human lives, transforming citizens into subjects.”
Again, this was rubbish. Had the Evans family been living in America it is unlikely that Alfie would even have survived as long as he had, unless of course they had had the money to pay for the paediatric intensive care that has kept him alive for months at Alder Hey. And in any case American law, just like English law, permits doctors to go to court for permission to stop providing artificial ventilation to children: just ask the parents of Los Angeles baby Israel Stinson, whose ventilation was removed in 2016 by court order.
The Conservative Review, another American journal exercised about the dangers of socialised medicine, accused the “British Government” of taking Alfie off life support, as though our socialist Prime Minister Theresa May, had simply decided to kill a sick baby for the hell of it, or perhaps because she was left wing.
The tsunami of stupidity from the American right continued after Alfie’s death.
“The British government’s decisions to allow two critically ill babies to die in two years is a natural reflection of the culture of death and the steady increase in totalitarian tendencies among Western governments.”
Yet amidst the tumult there were still some relatively sensible voices.
UKIP MEP Steven Woolfe called for an “Alfie’s law” which would require:
“ … the parents defending their child´s life before the state as equality of arms, namely a fully funded legal team with access to medical and legal expertise, as the NHS now enjoys without any scrutiny. This independent advocate must not be appointed by Court or the NHS but must be provided at the earliest opportunity, when a hospital is first applying to court.”
In fact all this was available to the Evans family anyway; certainly they were able to instruct six different legal teams, as well as various eminent independent doctors from both Britain and abroad all of whom agreed with Alder Hey about Alfie’s medical condition. On the other hand legal aid isn’t available in such cases unless you are very poor, so yes it is a very good idea and no, it probably won’t happen. Charlie Gard’s parents, for example, could only be represented because their lawyers had agreed to act for free, an obviously disgraceful state of affairs. Surprisingly for a UKIP politician, Mr Woolfe’s point that such cases should be contested with “equality of arms,” is a form of words that seems to have come directly from the jurisprudence of the European Court of Human Rights, an excellent example of how the civilising culture of that court has been able to insinuate its way into the most unexpected places.
Fraser Nelson, the civilised and persuasive editor of the Spectator, also called for an Alfie’s law. His version would give parents the right to take their children abroad for treatment once the NHS has done all it can. It sounds superficially attractive and moderate until you realise that it would mean giving parents the right to take decisions which could be flatly against the interests of the child.
Far from being a fitting memorial such a law would be utterly regressive. Since the middle of the nineteenth century the High Court has been able to exercise an inherent wardship jurisdiction over children, and when it has done so the principle on which it has always acted has been to promote the best interest of the child, as determined by the judge, See Re W  1 FLR 203 (Incidentally, the ancient jurisdiction of wardship, with its origins in feudalism and its modern usage dating from the days of unrestricted free market capitalism, gives the lie to those historically illiterate American conservatives who see judges being involved in issues about the care of children as being in some way akin to socialism).
If Mr Nelson’s proposal were to be in any way effective, as opposed to a pointless gimmick, it would turn the law back in the direction of the early nineteenth century when children were little more than the chattels of their parents.
It would be absurd, and a victory for the most disreputable religious bigotry, for English law to take such a turn now. We should instead celebrate the fact that we have, on the whole, brave and independent family court judges who follow clear and long-established principles of law. Of course their decisions are not always correct but no good will come from tinkering with the fundamental principle of English law that moral dilemmas about the treatment of children can only be properly resolved – as they have been for over 150 years – by relying on the judiciary to listen to the evidence and then to decide what is best for the particular child involved. That is certainly not unjustifiable government interference in the rights of parents; it is upholding the rights of the child. Nor is it socialism; it is, in fact, the very essence of liberal individualism.