Three days after Tom and Kate Evans abandoned their legal fight, their son Alfie has 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. In some quarters, this has unfortunately led to denunciations of the doctors, the judges, and the legal system. Ill-informed and prominent voices—from America, in particular—have variously blamed his death on secularism, or the NHS, or ‘government death panels.’ Others in the UK have called for an ‘Alfie’s law’ designed 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 ill-advised, 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 well-intentioned calls to give parents more legal rights over these terrible end of life decisions are fundamentally mistaken.
The key to understanding the case is one very simple but 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. This is not an obscure or difficult concept, but its very simplicity means that its far-reaching implications are sometimes not properly appreciated.
In ordinary family disputes it means that when considering where a child should live following a divorce, for example, fairness towards the parents is, in itself, irrelevant. Infidelity or violence on the part of one or the other parent might have landed that person in jail but 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 will agree, even though the answer is frequently unclear. Medicine is an art as well as a science and there is often great uncertainty. Parents usually agree to be guided by medical advice and expertise, 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 receiving a blood transfusion, a theme that formed the subject matter of Ian McEwan’s novel The Children Act. In such cases, saving the child’s life will usually over-ride the parents’ wishes and the injunctions of their religious doctrines.
When doctors and parents cannot agree, unless parents are given carte blanche to do anything they like, someone must decide. In accordance with the stipulations of the 1989 Act, 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 have become, doctors should always strive to preserve it for as long as possible. People and organisations who hold such a view have featured prominently in the activism surrounding 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 sustain it for as long as possible are themselves inhumane. Unless we adopt the position that all life should be extended as long as possible, irrespective of its quality, someone will eventually have to decide when treatment should be discontinued.
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 prolong intolerable suffering or a futile life. Sometimes the best possible medical treatment is palliative, with the aim of simply alleviating 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.
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Who, then, 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 to be the child’s interests). But, just as parents can sometimes be wrong in demanding that treatments (such as blood transfusions) be withheld, 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 obviate them.
At issue in Alfie’s case was the question of 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 providing only palliative care. The former option could have kept him alive in a semi-vegetative state almost indefinitely. The latter led to his inevitable death within a matter of days.
Since such cases only come before the court when there is an irreconcilable disagreement between parents and hospitals, the judge is 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 been almost entirely destroyed by the aggressive neurodegenerative disease with which he was afflicted. Any fair-minded reader studying the judgment of Hayden J will be impressed by the humanity evident in almost every sentence of his ruling. But, however kind and sympathetic a judge may be, 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 ordeal of watching their own children die. Conducting High Court litigation under such circumstances, with the dawning realisation that the weight of medical expertise favours a course which will hasten your child’s death, must be almost unbearable.
Alfie’s parents were unrepresented at the original hearing in February. It is not altogether clear why that was so; since the dispute with Alder Hey hospital began, Hayden J. noted that they have instructed “a long succession of lawyers.” But most of the actual advocacy in this crucial hearing was undertaken by Mr Evans, and it cannot have made an already gruelling experience any easier that the parents decided to represent themselves in court. I have been a barrister for 30 years, and I would 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 under the pressure is astonishing, and the judge expressed his admiration for how Tom Evans 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 engaged solicitors who commissioned several independent expert opinions, all of whom agreed with the doctors at Alder Hey that Alfie’s medical prognosis was hopeless and that Alfie’s brain had deteriorated to an extent that was “catastrophic and untreatable.”
One of the independent experts instructed by the family was Dr Martin 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. Three possible explanations were offered 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, identified in the judgment as Dr M, a Consultant Paediatrician specialising in intensive care medicine, put it this way:
I believe that it is 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.
Dr R, a consultant in paediatric neurology, was of the view 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 exacerbate any suffering Alfie was still capable of experiencing. Alfie’s case was not even 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. If that did not achieve its unexplained purpose, he would be flown to Munich, where 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. 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 were not without their risks and, if indeed Alfie was capable of experiencing pain, those risks included subjecting him to unnecessary distress.
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Alfie’s case—like that of Charlie Gard last year—and the desperation of his young parents have been ruthlessly exploited by religious and political actors with dubious motives of their own.
An American based pro-life activist named Christine Broesamle contacted Mr Evans early in the year after she read one of his Facebook posts. Previously, her contacts had offered to fly Charlie Gard to Rome, and she said the same 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 and, on this basis, he pronounced Alfie “fit to fly.” He further suggested that Alfie could be prescribed an anti-convulsant, a claim the court found to be “entirely contra indicated by his medical history.” This was a gross breach of professional ethics, 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 (CLC)—described in court as “a campaigning organisation” (it campaigns, inter alia, against abortion and gay rights)—which became publicly involved after the parents had 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 without hearing oral argument). 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 in which he stated that:
[A]s 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 and unarguably wrong. One of the many rather mysterious things about the case is quite why the CLC 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’s own legal knowledge is a little rusty, she had at her disposal the services of a practising barrister, Paul Diamond, who for 10 years has been “standing counsel” to the CLC. 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.
In accordance with the CLC’s legal advice, Mr Evans 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 with hospital staff, and the police were called. Back to court the parents went, now represented by Mr Diamond bearing a ‘habeas corpus’ application that can only be characterised as legally nonsensical—I suppose we can’t blame the law student for that, since it must have been Mr Diamond’s idea—which was inevitably struck out by both Hayden J. and the Court of Appeal. With remarkable understatement they described the application as “misconceived.” Far from helping the desperate parents, it is difficult to view the CLC’s involvement as anything other than exploitative.
The nadir of this circus arrived with the announcement that summonses had been served on doctors at Alder Hey Hospital, charging them with conspiracy to murder: a stunt with not even a veneer of legal respectability. Theoretically, such a course could have left Mr Evans vulnerable to being sued for malicious prosecution (although I am sure that the doctors at Alder Hey would not have pursued it), and any lawyer associated with it would be hauled before his or her professional regulator. It is inconceivable that a barrister such as Mr Diamond could have advised his clients on such a course, so it is safe to assume that the advice to issue the summonses came from Mr Stroilov the law student.
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By now, angry and intimidating crowds had gathered outside the hospital, with no apparent thought given to the parents of other sick children, and even less to the doctors trying to treat them. A vicious social media mob whipped itself into frenzy of indignation 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 portrait was circulated on social media, defaced with a Hitler moustache. His sexuality was mocked. Someone tweeted a call for him to be hanged. And, through all this, there has not been a single word of public support from David Gauke the Lord Chancellor, even though one of the requirements of his job is that he “defend the independence of the judiciary.”
Finally, 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. This 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 appearing to advocate just that for Alfie.
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 speaking “ridiculous emotive nonsense” and “using the court as a platform for platitudes and soundbites” instead of making the proper legal submissions. That was polite compared to his description of Mr Stroilov, who he described as a “fanatical and deluded young man.”
Appeals to emotion were never going to win in court, but they were nonetheless effective outside it, ensuring that Alfie became a cause célèbre for unsavoury and unscrupulous actors on both sides of the Atlantic.
On Fox News, Nigel Farage denounced the proceedings as “state sponsored euthanasia,” even though it was neither state sponsored nor—even by the strict definition of the Catholic Church—euthanasia. Polish, Italian, and Spanish social media accounts joined the fray. Eager not to be left out, American politicians also decided to exploit Alfie’s terrible circumstances to make their case, extraordinarily, against ‘socialized medicine,’ in spite of the inconvenient fact that the outcome would have been identical were Alfie being treated in a private hospital.
Senator Ted Cruz, at one time a presidential contender, spoke up, spoke out, and spoke nonsense:
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.
— Ted Cruz (@tedcruz) April 25, 2018
This 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. Undeterred, Cruz went on to develop 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.
— Ted Cruz (@tedcruz) April 25, 2018
Again, this is false. 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 or the insurance to pay for the paediatric intensive care that has kept him alive for months at Alder Hey. In any case, American law, just like English law, permits doctors to seek permission from a court to discontinue a child’s artificial ventilation. In 2016, Los Angeles baby Israel Stinson’s ventilation was removed by court order in defiance of the parents’ wishes.
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 Conservative Prime Minister Theresa May, had herself decided to kill a sick child for unspecified reasons. Examples of this kind of demagogic illiteracy continued even after Alfie’s death. The former Speaker of the US House of Representatives, Newt Gingrich, tweeted this:
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. Read more: https://t.co/QSu58pKC1n pic.twitter.com/2ZsCfTTHaa
— Newt Gingrich (@newtgingrich) April 27, 2018
Nevertheless, amidst all the viciousness and tumult, some relatively sensible voices did emerge. On Facebook, 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 an applicant is very poor. So, yes, it is a very good idea and no, it probably won’t happen because legal aid is never expanded these days, it is always cut. Charlie Gard’s parents, for example, could only be represented because their lawyers had agreed to act for free, which is an obviously disgraceful state of affairs. Oddly 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 been lifted 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 reach into the most unexpected places.
Fraser Nelson, the thoughtful 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. This sounds superficially attractive and moderate until you realise that it would mean giving parents the right to take decisions which could be flatly contrary to 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. 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 who see the involvement of judges in issues relating to the care of children as being somehow akin to socialism. On the contrary, it is the very essence of liberal individualism. If Mr Nelson’s proposal were to be in any way effective, 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. Instead, we should celebrate the fact that, on the whole, we are fortunate to have courageous 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 and defending the rights of the child.