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The Tragic Case of Alfie Evans

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 [2018] 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.

*     *     *

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.

*     *     *

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.

*     *     *

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:

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:

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:

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 [1990] 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.

 

Matthew Scott is a criminal barrister at Pump Court Chambers and a legal blogger. You can follow him on Twitter @Barristerblog

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151 Comments

  1. Bill says

    The important takeaway here is that parents in Brittain, and much of Europe, are just babysitters for the state when the kids are not at school. Regardless of his condition the fact that the parents couldn’t take him to another country is absurd. They had basically kidnapped him and only agreed to return him as long as they promised not to try and keep him alive. Ridiculous. Nobody would want to live in that state, and nobody needs to agree with the parents, but the principle here is concerning.

    I feel terrible for the few people still stuck on that continent with any dignity. I wonder what other sorts of decisions the NHS will make as the electorate continues to evolve…

    • Bill says

      Sure glad the Court didn’t get to decide Stephen Hawkings’ best interest was to die when his nervous system degenerated.

    • David Paxton says

      I want to live in such a state. And only in such a state.

    • Brian Simons says

      Rubbish. Did you not read the whole article? The courts are separate from the state/government and work according to laws and principles arrived at through a democratically elected parliament. As stated the best interests of the child are paramount with the desires and views of parents and medics taken into serious account. The views of medics, who are the experts, are given due weight. Many medical experts were consulted and their views about Alfie’s prospects were eventually shown to be right. To describe all this as kidnap and state interference is simply wrong. The NHS staff had treated Alfie and kept him alive for a long time before coming to their decision in dialogue with the parents all the while. This was all free at the point of delivery – even their legal representation was given free. In places like the USA it is unlikely that Alfie would have had any of this because his parents could not afford it – that goes for the legal representation too. Please don’t criticise a system you have no experience of!

    • Alex says

      The important takeaway here is that parents do not OWN their children. Nor does the state. Children are little people and they have their rights, which are independent from their parents’ rights. And there are independent state institutions which make sure that parents’ don’t overstep their rights and damage their children. Like, it’s illegal to beat your children, or starve them or instigate them to commit crime. It’s also illegal to cause your children pain and suffering through keeping them on life support, when it only hurts them and 100% of medical experts (even those hired by the parents) agree that the child can never get better and that child is only hurting by stayin alive. It’s inhuman to leave such child on life support for the glory of their parents sacrifice. Yes, I have children of my own, and yes, I’m signing up to this.

      • The state owns your children from the moment you register their birth, which is not a legal requirement, by the way.

    • E. Plommer says

      You haven’t absorbed a single point, or, word in this piece.

    • So much better to have your medical treatment decided by insurance companies who value their profit margin over your health care right?

      • Str8Shooter says

        I’ve never heard of an insurance company physically preventing a patient from obtaining care so that he would die.

        The UK govt does that though,OddJ.

    • sam says

      The UK doctors are playing God
      In the case of a child noone should have the final say except the parents
      Doctors are fallible. They are often wrong as in the case of the 2 children who had to escape the NHS and interpol to go to Prague for proton beam therapy which worked contrary to what the NHS assured us.
      In this case the doctors said that Alfie would die if they took him off the verntilator. He didn’t. They were wrong again. All the time he ahd been on the ventilator he had been on supressing drugs which had been affecting him
      He has now died because they gave him injections of two drugs to supress his breathing, effectively euthansia
      This is unbelieveably evil

  2. The law is the last refuge of a scoundrel, and a logic-chopping lawyer. Scott’s argument is predicated on a law that gives the state the power to decide what is in a child’s best interests, even when the parents are demonstrably loving and committed to the child’s welfare. That Britain’s legal system was unaccommodating in such a case is an indictment of the system, not a defense of it.

    • Jeremy H says

      The fact that the parents are “demonstrably loving and committed to the child’s welfare” does not mean that they somehow automatically know what’s best for that child. In Canada we have had recent cases in which undoubtedly loving parents have tried “home remedies” for treatable diseases that have resulted in the death of the child; should the state not have the right to intervene in such cases? And if so, should that right not also extend to preventing the offloading of potential ongoing suffering other jurisdictions?

      • Bill says

        To me, the outrage is fostered from the fact that the Doctors told the court he’d die without the life support. The court agreed, ordered life support pulled. Then, when he was able to breathe without ventilation, that is pretty empirical that the Doctor’s diagnostic was incomplete/incorrect. As a result, what became the story is that here’s this 23 month old infant, who can breath on his own, being deprived of food and water for whatever time it takes him to die. Granted, it’s very cursory, but the typical rule shared to people is a few minutes without air, a few days without water, a few weeks without food — and surprise, Alfie died after a few days without water. So he didn’t die because he was taken off the ventilator but because they refused him water. In any other setting you can imagine, if a party willfully withheld water so that a person died of dehydration (organ failure resulting from, etc) it would be viewed as criminal. That is the crux of the problem. You give the example of the JWs withholding blood transfusions or perhaps the numerous people who wish to withhold vaccines. The problem is the lack of accountability when the decision to kill/let die has an issue.

        Here’s perhaps a better case relevant to the US: A prisoner is sentenced to die. The decision/procedure by the state is an overdose of a drug “off schedule” via a cocktail where they heavily sedate and then stop breathing. Those are routinely argued as cruel and inhumane because there is no way to guarantee that the prisoner does not suffer pain — the courts consider the best interest of the prisoner just as the child in the UK case. However, court and world opinion is such that even though Doctors cannot “prove” that there was pain (the patients are deceased) they routinely argue and win the stays. The doctors said he could not breathe on his own/could not feel pain/etc. He did breathe on his own, who is to say he did not feel pain?

        Had they removed the life support, noted the spontaneous self breathing and then said “fine, food and water but nothing other than that” then the outrage would likely have been much less. The same if when removing the vent he had died right then and there due to lack of breathing.

        • He was not ‘deprived of food and water’ – he could not swallow and had been fed via a tube to his intestines for 18 months. When a person is dying, their body can’t digest food anymore and it can cause pain to be fed as the food sits inside their body and rots. He had oxygen, hydration and, yes, at the parent’s insistence, was also given a special formula and fed. How long he was given that formula for, the public do not know, as the parents finally stopped posting on FB 24/7. And that was as it should be.

          • Bill says

            I don’t believe Stephen Hawkin was able to swallow for quite a long time before he finally died, so again…what is the specified point at which they are dead? Would it have been right to have deprived the feeding tube to someone like Stephen Hawking 30 years ago by the same logic?

            I’m not saying Alfie wasn’t vegetative, nor do I disagree with the original order to pull life support; however, once they pulled it and saw he could sustain himself breathing you’ve opened up a whole new can of worms about withholding food/water until he expires. Very inhumane compared to say…the judge ordering life support be removed and euthanasia drugs administered.

          • Being able to swallow is not a definition of life or death. Stephen Hawking had the ability to think, communicate and enjoy life right up to the day he died. Alfie only had that ability for a very short time.

        • Also, he was undoubtedly dying as doctors knew his brain stem was deteriorating and it was only time before his organs began to shut down. How long someone takes to die is as long as a piece of string, some people take hours, some take days or weeks. He took 5 days, the last 3 in peace and quiet with his family. He was on oxygen for most of that time, so no, he wasn’t starved to death – if his lungs had been in better condition, he wouldn’t have needed the oxygen at all.

        • Adam says

          Not true at all.

          He was off the ventilator but still required manual oxygen, he was still given fluids right up to the moment that his body couldn’t accept it anymore.

          There was also more going on behind the scenes that couldn’t be commented on (inc between the family) because everyone to do with the hospital is gagged so we only got the father’s side of events – we really saw the mother.

          As a result everyone has jumped on this with only 10% of the facts and spun their own narrative.

          Regardless of what you think of the actual case, there was no need for the Alfie Army to threaten and intimidate, staff and parents and kids going in and out of the hospital. There were 100’s of other children in that hospital entitled to be treated in peace.

          • Str8Shooter says

            If it is all hush-hush, how do you know anything, Adam?

            Are you making things up or are you violating your ethical obligations to Alfie and his family?

            It must be one or the other.

        • Monica says

          I agree with you Bill. “Sometimes the best possible medical treatment is palliative, with the aim of simply alleviating pain and discomfort. ” Brittain already had the best medical treatment for terminally ill patients. It was called Liverpool Care Pathway. I thought it’s illegal now. But here we are, same way in new way, but first hospital needs a court permission…I just don’t get that, in the best interest of a patient is to die by being starved to death, isn’t that painfull?Sorry for my english, I don’t use it very often since I left Brittain.

      • Str8Shooter says

        World of difference between preventing abusive actions and preventing parents from obtaining medical care.

        The fact that govts prevent parents from abusing or neglecting their children does not mean that the govt should prevent parents from obtaining medical care for their children.

        A govt’s job is to protect our fundamental rights, not to “end suffering.”

    • David Paxton says

      How would this standard of ‘loving and committed…’ apply to the example of Jevovah’s Witnesses that Scott provided?

    • E. Plommer says

      The whole point of the legal disagreement was that, based on the facts, the parents weren’t committed to Alfie’s welfare.

  3. Anonymous says

    Can the author explain how it is in the “best interest” of any individual to die? The phrase “it is in Alfie’s best interest to die” is an oxymoron.

    • Jeremy H says

      When that individual’s brain has degenerated to mush and they have no hope of any meaningful quality of life? We treat our pets with more dignity and compassion when they are in the throes of terminal illness than we do our loved ones. And it’s because of our selfish attachments and personal emotional needs that we do so not because of our selfless love for another being.

      • Bill says

        If this is truly the case, then why didn’t the court order removal, as they did, and then when he continued to breathe on his own amend their order to provide a lethal injection — the same as we do our pets and elderly under euthanasia laws?

        • Jeremy H says

          @Bill

          That’s a valid point, but the courts aren’t in a position to legislate new laws and so made this decision within the current legal framework. And it was never expected that he was going to die straight away when he was taken off the ventilator.

        • Adam says

          There was NEVER an order for a lethal injection. The injection was nothing more than a sedative, like when dying adults get more morphine to numb any pain as the body breaks down.

          Facts not BS please.

          • Bill says

            I said why WASN’T there — specifically responding to an earlier comment about how we euthanize animals. But interesting point. If he was vegetative, couldn’t think/feel…why was he given a sedative? Because of discomfort caused by days lacking food/water? Wouldn’t a lethal dose have been more humane? Last I checked, when you go into palliative care they don’t withhold food/water as they did in this case. It’s provided alongside of the morphine drip (if morphine is given, etc)

      • Anonymous says

        This doesn’t answer the question. What is the _interest_ of the child in dying? How can anything living conceive death in its own best interest? Even an insect which is barely conscious will instinctively try to evade death. Even a mortally ill animal will not let itself eat without resistance. Once you are dead there is no “interest” to be talked of. It is simply an absurd use of language to say that “it’s in X’s best interest to be dead”.

        • > How can anything living conceive death in its own best interest?

          So no one could ever rationally refuse life-saving medical treatment?

        • Jeremy H says

          @Anonymous

          So if you were offered the choice of a normal death vs being uploaded into a virtual reality hell and tortured for the remainder of the Universe’s existence you would be bound to choose the first option because it could not possibly be in your “best interest” to opt for death?

      • Str8Shooter says

        Alfie was a human being with loving parents, not a cocker spaniel with a master.

        We don’t euthanize humans precisely because they have infinite value as humans. They are not pets.

    • Balanced VoiceOfReason says

      Because to continue to be kept alive with no chance of recovery and the possibility of experiencing ongoing pain is a much worse decision to support.

    • Rose says

      Have you ever heard the term “suffering”. It’s a similar principle to when vetinarians euthanise a sick pet – allowing them to live in would only be painful.

      But the case of Alfie is not about euthanasia here. The parents request was to prolong a life more than it needed to be. Alfie was going to die either way. The suggestion to transfer a terminally sick infant across Europe to simply have his life prolonged by a short period of time is absurd. Being on life support is horrific thing to see let alone to endure, prolonging Alfie’s life would have been futile and potentially caused him more harm. Allowing him to die peacefully is the kindnest option. In health care we have what we consider “good deaths” and one of those, is where a patient is not in pain and does peacefully. These deaths don’t often happen on intensive care units.

      In terms of health care “it is in Alfie’s best interest to die” is not an oxymoron at all.

      For your information, i’m A nurse with a background in intensive care,
      Palliative care and emergency care.

  4. Andrew Tidgwell says

    “it’s in your child’s best interest to half-suffocate, and when that doesn’t work, starve to death”
    Quoting the law to justify the state granting itself universal parenthood, with actual parents as something like provisional guardians, is cold comfort if not outright absurd and psychopathic.

    • TheRealThunderchild says

      Only “the state” didn’t “grant itself” anything . What is it about the term “independent judiciary” is abstruse to you ?

    • Cam says

      Because, the ventilation and other intervention all have a negative cost on Alfie (in terms of discomfort , risk of infection,) in addition he experienced frequent seizures. We can argue that Alfie’s quality of life is probably zero or near zero. Normally, we accept the costs and risks of ventilation because it’s beneficial to the patient in th long run, ventilation is used to help preserve the body long enough for it to recover. However Alfie’s prospect for recovery as non-existent, as assessed by all the medical teams that examined him or reviewed his file, even the team from Rome. So the question becomes should we continue to ventilate and support Alfie indefinitely even if he derives no benefit from it and probably suffers harm, thanks to his seizures and other issues. I’d argue that flying him to Rome, and all it’s associated harms, and sustaining him on such a poor quality of life indefinitely (with no hope of improvement) is decidedly not in his best interest.

  5. Charles White says

    I formed an early negative opinion of the article when the author used the non sequitor argument of the J/Ws and blood transfusions. In those cases the state interferes to save a life. In this case the state interfered to remove a life. Big difference, but lawyers are good at deflection.

    I will have to give a second fair reread of the article tomorrow morning knowing the non sequitors are there.

    • Bill says

      Agreed, the better parallel is the courts intervening to stop a prisoner’s execution because the prescribed lethal injection cannot be proven to “not cause pain/discomfort” (cruel & unusual punishment). I’d wager if a State said their new policy is to strap to a bed, in a locked room, and withhold food & water until dead there would be quite a bit of outrage.

      • Adam says

        Except that never happened.

        Read the facts rather than the spin.

    • Wrong. The state intervenes on behalf of the child’s best interests. The question of “best interests” arises in both this case and in the J/Ws case. They’re relevantly the same.

    • Tim says

      Don’t bother with the second reading, your mind is obviously made up already.

      The concept is ‘best interests of the child’. It isn’t ‘make decisions about the child that are politically agreeable to me’. All medical advice, from the Hospital and from independent advice obtained by the family, said that it was not in Alfie’s best interests to continue receiving treatment.

      • Charles White says

        Actually, I did because I can look beyond my prejudices.

        Now maybe look beyond yours and question why the child was not given a pro-active chemical death as opposed to a slow attrition death.

  6. If anyone thinks being a parent confers some kind of mystical medical knowledge they should remember this next time they are bleeding from the asshole and are wondering whether they should see the doctor or go running to mummy and daddy.

    What we saw in this case was analogous to what we see with transgender politics: that the mind of spirit is independent of the body; that feelings trump biological facts; and that violence and threats are legitimate when targeted at those who disagree. I work in Liverpool and I have colleagues who had to drive past the demonstrators every day. This wasn’t some quiet vigil.

    To all intents and purposes Alfie was already dead. Maybe I’m the US they’d have dragged his death out even longer, until the last cent as been drained from their parents bank accounts. Except, of course, that would have happened already because medicine is driven entirely by profit and another dead working class kid would go unnoticed in a country with third world level infant mortality.

    • Bill says

      By the same logic (self-sustained heartbeat & breathing, but incomplete brain function) means that Stephen Hawking died 40 years ago as well. If he was already dead, then why wasn’t a death certificate issued the instant the life support was pulled but instead 3 days later? Perhaps because his condition did NOT meet the medical/legal standard for death? The original order from the court — fine, but as soon as he was breathing off vent the conditions changed.

      • Stephen Hawking had full use of his mental faculties, there was never ever any mental disability with him. He only had physical disabilities from his disease. Alfie had no brain left.

      • A lot of people ouija-boarding Stephen Hawking into this, strangely ignoring his support for the system you resurrect him to criticise.

        • Bill says

          You read too much into what I’ve posted. People saying “he couldn’t swallow, so it was ok” — Hawking couldn’t swallow. You have to decide where your line is. Hawking could think, Alfie couldn’t. Uhm, he was 23 months old and he could originally think. Had technology not evolved in time to allow Hawking to communicate I would guess that 50 years ago a man sitting in a chair unable to move/speak/swallow would have been judged as “unable to think” just as well.

          It’s simple, you have to have a clear standard other than cost, in my opinion. The only thing egregious in the case of Alfie is that the legal system specifically prohibited the parents from transferring him to another facility (out of country) which was willing to bear the cost to continue care. It was in the best interest of the child to die rather than being sent to another facility who had some other treatment program they were willing to try? Sounds like adoption vs abortion to me.

    • Patrick says

      Maybe he was dead, but the parents should have been free to leave the country with their child. As a father of a three and five year old, not being able to do something would kill me. At some point, you’ll acquiesce to reality, but being stopped by the courts or hospital officials would hurt immensely. If there were Italian doctors who could assist, then by all means the parents should have been allowed to seek assistance. I’m deliberately not writing ‘help’ as its likely Alfie could not have been helped beyond his condition. Am I right in understanding that this man’s parental rights were stripped?

      • Anon says

        Alfie may not have survived the flight to Italy, the change in pressure may have created more distress for him. This may have been discussed in the judgment.

        • Different people may have different criteria for what makes a life worth living.
          For some, the change in cabin pressure during plane flights causes unbearable distress, to the extent that they wish for death. Or maybe it’s just the final straw that breaks the camel’s back, making them long for oblivion.
          For others, however, it’s nothing but a momentary inconvenience that they don’t even remember after stepping off the plane and only rarely makes them doubt that life is worth living.
          In case of conflict, whose opinion should prevail? Where there may be room for reasonable differences of opinion, in my view the optimal course of action is the more lenient one. Wait, that is, for at least a couple of hours after the flight and see if you manage to recover. There is still time for more drastic measures later.

      • Jeremy H says

        @Patrick

        “Maybe he was dead, but the parents should have been free to leave the country with their child… Am I right in understanding that this man’s parental rights were stripped?”

        What about Alfie’s rights as a UK citizen? Does the state not have an obligation to act on a citizen’s behalf even where intentions of caregivers may be good but results (based on expert medical opinion) would only be to prolong suffering?

    • Another Anon says

      Look up the sad case of Jahi McMath to see just how awful it can be when death is dragged out with no end in sight in the US.

  7. Andrew Mcguiness says

    ‘The best interests of the child’ is a phrase which has been used to justify a wide range of government interference. In the Netherlands and Germany, healthy, happy – and learning – children have been removed from their families simply because the family was homeschooling.

    No doubt there are cases in which the best interests of the child should be enforced contrary to parents’ wishes, but the whole concept needs a deeper exploration and better justification than is given in this article.

    • Daniel PV says

      ghj – really poor comment. Anti-intellectual, ignorant and you know you’re lying.

  8. Yes, and there are plenty of people quite pleased by that state of affairs as well as the anger it is bound to elicit

  9. I see the Twitter rent-a-mob have turned up. I wonder if any of them actually bothered to read this article.

  10. Gregory Lorriman says

    The problem is the phrase “The best interests of the child”, or in its original justification “the interests of the child are paramount”, as supported by bishops who should have known better.

    The phrasing could be interpreted to mean endless amounts of resources on a child that doesn’t have a terminal condition. Or taking them away from parents who violate some new State sponsored doctrine, such as being pro-gay marriage or EU Remainers, as has already been the case in denying adoption.

    It’s an unbalanced and poorly formed law.

    Meanwhile, this was not the test case needed to bring it down. The parents may have had their parental prerogative denied unjustly, but withdrawal of life-support for a terminally ill, permanently unconcious child is not murder but natural death. That prerogative was to seek their own treatments, not insist on the State continuing to expend resources as they were doing.

    And as Christians they should have been a model of reconciliation to death instead of being encouraged to a desperation of clutching at what isn’t theirs but God’s. Pope Francis should have phoned him back to tell him off.

    • The circumstances of this child’s demise are strikingly similar to the widespread ancient habit of unwanted infant exposure. See the story of Oedipus.
      “Natural” death can still be murder, murder can well come to seem natural. But just because the British define murder differently (and I’m looking forward to the next edition of the Oxford English Dictionary for guidance in this regard, perhaps to an “Alfie clause” in the new definition), this doesn’t mean everyone has to agree. I don’t see how a ban on the further provision of medical services can be called anything other than murder.
      Abandonment of the weak and elderly is a custom that predates Christianity and was (and to some extent still is) opposed by Christian dogma. The parents should be reconciled to their own eventual deaths, not to the government-compelled abandonment of their child to death. It is strange to invoke Christian dogma in support of a custom it condemns.
      Anyway, even though the parents’ and Pope Francis’s behavior may have failed short of ideal, hopefully you will be able to renounce your resentment caused by their failings and forgive them.

  11. Bill says

    I would argue that this logic will lead to all sorts of terrible outcomes, like children removed from home because of low iq parents, parents that wish their kids to have religious (or just not Marxist) education, patents that join “radical”political movements, parents who commit financial crimes, etc…. But not only would those things likely be welcomed by the author and the European ruling class, but likely already are happening.

    What about parents who have scissors or screwdrivers on them outside their original packaging in London. Do they get to keep their kids?

    What about parents who complain about their children being abducted by child molestation rings that the police cover up in Brittain while arresting mean people on Twitter? Do those hate mongers lose their parental rights? I mean who can say it’s in a child’s best interest to have islamaphobes as parents?

    • David Paxton says

      I’d like to hear what outcomes the reverse of this logic might lead to in your opinion.

      • Bill says

        Simple, have the conviction to actual order not only the removal of the life support and ALSO ordering the administration of euthanasia medications sufficient to guarantee immediate death. Of course, nobody would stand up to defend the judge who orders that. Far different than removal of the vent and then he expires when he expires but you continue to provide food/water OR the euth. drugs.

        • Bill says

          Also, in the hotly contested abortion debate in the US, you’ll notice that abortion providers do issue pharmaceuticals to “kill” the fetus prior to abortion in later terms. Had a case make the courts where that drug did not function so the abortion resulted in a live birth albeit with horrible side effects and the infant dying due to the complications a couple of years later. So, should they have simply lopped off the head when it came out breathing? It would have been in the best interest. What was the problem with Gosnell snipping the necks? Clearly in the best interest of the child since the child was unwanted and extracted way too early to have a real chance at survival if it had been a live birth.

          In the US, abortion (not killing a baby, just a mass of cells) at least uses chemicals to insure a rapid death of the mass of cells, you know, the ones that can’t feel and aren’t alive. That wasn’t done in the case of Alfie.

  12. Molly says

    The problem is with the state being allowed to decide the best interests of the child in the absence of any “harm” test. The state should be able to intervene in the best interests of the child when the course of action being carried out/proposed by the parents will cause what would be widely agreed to be an objective “harm” to the child.

    The state should not be allowed to substitute its decision for the parents’ decision simply on the grounds that the state thinks its decision is the better one, in the absence of what would be widely agreed to be an objective harm.

    • Jeremy H says

      @Molly

      “The state should be able to intervene in the best interests of the child when the course of action being carried out/proposed by the parents will cause what would be widely agreed to be an objective “harm” to the child.”

      That’s exactly why the state intervened in this case: to protect one of its citizens from unnecessary suffering at the hands of his own parents (well-meaning as they might be). Expert medical opinion unanimously stated that Alfie had no prospects and that the slow shutdown of his organs could very well be an excruciating process.

      • Molly says

        @Jeremy H

        But all the evidence was that Alfie couldn’t feel anything. There was no evidence that he was suffering, and therefore no evidence that prolonging his life for a bit longer in Italy would have prolonged any suffering. In that situation I feel the court decision was very wrong. It would have done no harm to Alfie to let him go to Italy, and it would in all probability have helped his parents when he died as they would feel there was no was “no stone left unturned”. I feel the decision of the court was cruelty to this young couple. I certainly think that this decision is not “what Alfie would have wanted”.

        • Anty says

          No. Firstly Alfie’s medics all agreed they were not certain he couldn’t feel pain. Secondly the Vatican hospital had not proposed any type of curative treatment, and had all medical opinions had been that his condition was progressive and fatal. The proposed interventions (tracheostomy and PEG tube) were not to achieve any other goal other than prolonging his death, so being the very definition of unnecessary surgery, which cannot be anything other than causing harm.

          I cannot begin to imagine what it would be like to be in the position of Alfie’s parents, but I would think that most of us would leave no stone unturned in trying to find a cure. On occasion this has the effect of losing sight of the real goal, which is to do what is best for the patient. I accept that it appears counterintuitive that death could ever be the best option, but when trapped in a prison of a body, unable to think, move, swallow or breath unaided, yet possibly being in pain, death really is the kindest of outcomes. The twitterati have been quick to praise Alfie’s dad and the model of an ideal father for going through all of this. This to me does a huge disservice to the parents of terminally ill children who have made the bravest and most difficult of decisions, and agreed to stop treatment when nothing more could be done.

          In this case numerous second opinions had already been obtained by Alfie’s parents, from specialists from a number of different countries, and they were all in agreement. So at what point to you stop the ‘one last second opinion’? The judgment stopped a potential unending tour of Europe, just trying ‘one last thing’, a litany of unnecessary procedures proposed by people who should know better

  13. Bill says

    How long until courts in Brittain argue that a consenting minor’s desire to enter into a romantic relationship with an adult is in their best interest despite the parents’ disagreement.

    Would the mayor on London favor such a ruling? Would it depends on the culture that the people belonged to?

    How long until genetal mutilation is covered by the NHS?

    • How long until courts in Brittain argue that a consenting minor’s desire to enter into a romantic relationship with an adult is in their best interest despite the parents’ disagreement.

      The UK has a legal limit on the age at which we can marry.

      When the US does it can lecture us on the possibility of revoking it.

    • Also, while I don’t like to criticise people’s spelling unnecessarily you might sound a bit more knowledge about the UK if you could spell Britain right. It’s not a typo if you keep doling it.

  14. Kate Young says

    What an extremely well-articulated article. Especially ‘…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.’

    Thank you for writing.

  15. Bill says

    On what matters do fans of this think parents should be able to make decisions? Stuff like clothing and bedtimes or is that not liberal. I’ll behind on my Thomas Paine

  16. Bill says

    And just to not be overly negative I also thought the article was well written and I’m glad it was published on this site. Free expression and openness to ideas is important and this site always has thoughtful articles.

    It’s just that the values held by the people who are okay with the way this case was handled case are terrible and hopefully the rest of Western Civilization learns from Britain’s mistake here.

    When people have no agency over their own lives or the lives of their children and personal decisions are made by national institutions it does not bode well for the society they belong to. It’s part of the reason they’re being slowly devourered, they have no responsibility for their society and it’s success.

  17. I agree with Bill.
    I am struck by the fact that people do not realize that this case opens a serious precedent. They are opening the doors of their homes to a totalitarian state.

    • dirk says

      A totalitarian state is not even necessary, the states of Australia and the USA have thought it in the best interest of children to remove all of them from indigenous parents, and to give them, somewhere far away,out of their influence, a proper, non-indigenous education and teach them a civilised language, I think in Australia even until 1970.

    • Anty says

      This does not set a precedent. As you will have read this is based on the Children’s Act of 1989 and is based on ethical principles which are upheld in other Western countries including Europe and the US, where judgments of this type are also made.

  18. Mark Matis says

    “Law Enforcement” spouses in the UK know full well what their husbands are, yet they cheer them on anyway. Sure would be a shame if a bunch of them started to die.

  19. Alison Mitchener says

    I refer you to Kenan Malik’s article in the Guardian: https://www.theguardian.com/commentisfree/2018/apr/29/court-unfit-place-for-case-like-alfie-evans-moral-complexity?CMP=share_btn_tw.

    These decisions should not lie with the Court. It troubles me greatly that this begins to feel like we are placing our feet on the path towards eugenics:
    – The hospital decided Alfie’s life was worthless (there where other things they could have done, and they chose not to);
    – the Courts supported them.

    • Molly says

      In fairness the hospital did all they could, and they can’t keep hopeless cases on life support forever. My problem is with the refusal to let him go to Italy in the absence of any solid evidence that doing so would cause him harm.

    • Jeremy H says

      “The hospital decided Alfie’s life was worthless (there where other things they could have done, and they chose not to).”

      You’re either being lazy or disingenuous. They did not decide that his life is worthless, what they did was factor in the worth of all the other patients, including critically sick infants who could better be served by the hospital’s limited resources, and made a painful decision. You think they would have spent the better part of 2 years keeping him alive him they thought him worthless? To attack the moral intentions of the staff in this case is about the lowest slander you could level at them.

  20. Bill says

    Agreed that it’s not the doctors fault. Unless they provided support for the decision to not allow the family to take the child to Italy. That’s the issue here. Not whether or not they should have kept him alive in Brittain, not whether there was a treatment option in Italy, not whether the family was going to later move him somewhere else after Italy. It’s the part where they said “nope you can take him back only if you make sure you let him die and don’t try and keep him alive with your own resources”

  21. John W says

    The parents are cowards for not letting the kid die.

    • Patrick says

      Thank God you haven’t had to face this. If you ever had, you wouldn’t write this.

  22. Pizza Pete says

    Not sure what to make of this smug, mealy-mouthed apologia except that I am fairly certain that the British are peasants.

    As a physician in the US, I find the legal treatment of this family morally abhorrent. People may sometimes make bad decisions; that doesn’t justify using courts to impose paternalistic dictates. So what if the kid spent a couple more weeks on a respirator? That’s no ones business but that of the patient and his family.

    By this logic perhaps we shouldn’t feed the elderly demented. “Let them die with dignity,” and so on and so forth. The technocratic upper middle class has become morally unmoored and unhinged. In place of basic moral values what’s left is obsession with sexual esoterica and a religious fetishization of race.

    I admit to sneering at Sarah Palin’s “government death panels.” I shouldn’t have. Draw a line in the sand as to what you think is completely unacceptable. Wait 18 months give or take. It will be crossed.

    The odd Douglas Murray aside, the British are a benighted people.

    • Jeremy H says

      As a physician in the U.S. you don’t work within the constraints of a socialized healthcare system where resources are dolled out not on the basis of affordability but availability, and it’s everyone’s business how those resources are used. I’m not sure if there was an acute need for another respirator in this case, but if their system is anywhere near as strained as the Canadian one staff and equipment are always in short supply. If the state is the party funding and providing life support then it definitely is also their business how that funding and equipment is best used.

      One might hold this situation up as and example of why the current socialized healthcare models are unethical or unsustainable, but I don’t expect to be having this conversation here in Canada anytime soon where this issue is nearly as divisive as abortion.

      • Pizza Pete says

        I think you’re getting at an important point that has to be clarified.

        If the treating doctors and court said, “Treatment is medically futile. We need to allocate resources to where they are most useful,” and stopped there, ok, I am somewhat – somewhat – sympathetic to that argument.

        What to me was infuriating and bone-chilling was the dictate from the courts/hospital that the toddler must die as we see fit. He must die this way or that way and not the way you want. You cannot go to Italy. You cannot seek alternative treatment irregardless of what the NHS is paying for. The Orwellian obfuscation used, “death with dignity,” changed my feelings not one bit.

        I know a highly educated couple (and I think classism certainly was a factor in this case) who were in a similar situation with a toddler with a terminal disease. When to stop treatment was a highly person decision that they had to make. That in this case courts and bureaucrats made that decision was abhorrent. While the parents may have been making a bad decision, they were not incapacitated or delusional. It should not be the business of the courts or bureaucracy to make “better decisions” for us.

        In the US the ethos is to tell the patient what you think is best if there’s a best decision, to provide information to facilitate informed decision making, and to admit what you don’t know. I have certainly been wrong, and I have had patients who didn’t like my advice and sought out second opinions, which I have no problem with. A second opinion is often a form of due diligence.

        Now, as for socialized medicine, yes, a central way that costs are kept down is through artificially suppressing supply. Because there’s not market signalling, bureaucrats are invested with a tremendous amount of power. Sometimes they are wise and just. Sometimes they are ghoulish:

        https://www.telegraph.co.uk/news/2017/10/17/nhs-provokes-fury-indefinite-surgery-ban-smokers-obese/

        While I not a health policy specialist, I am familiar with Canada’s system to the degree that I have some family there and heard them sing its praises growing up. They liked having health insurance insofar that health insurance is a financial product that provides peace of mind, they didn’t have to worry about paying for it (yay for fossil fuel wealth), and it was reasonably efficient in providing primary care. OK, fine, socialized medicine does those thing well. Unfortunately, as they hit late middle age some serious medical problems arose and they found that health CARE and health INSURANCE were two different things. They had insurance, but were not able to obtain specialized care in a timely way leading to some serious consequences. So there’s that.

        All in all, I don’t understand British culture well enough have a handle on how this type of thing could happen. My inference is that bureaucratic and administrative arrogance is a necessarily accompaniment to something like the NHS, and people eventually become acclimated to being treated like livestock. The upside for the US is that we’re getting a long overdue peak behind the ideological curtain.

        • Jeremy H says

          I agree with many of your misgivings about government overreach in this case. You give the example of a Canadian couple who realized later in life that their vaunted healthcare system is all that it’s cracked up to be. This is a typical case in Canada: in public school we are constantly taught about how much better Canada does things compared to the U.S., with an emphasis on healthcare. It took me to my mid-20s to overcome this anti-American indoctrination and see it for what it is (an inferiority complex).

          “If the treating doctors and court said, ‘Treatment is medically futile. We need to allocate resources to where they are most useful,’ and stopped there, ok, I am somewhat – somewhat – sympathetic to that argument.”

          You simply can’t ever say this in a socialized healthcare system, even though it is the underlying reason for decision making in most cases; revealing how dehumanizing such a system is (how it reduces patients essentially to cattle, your inference being correct) is absolutely taboo. I’m not sure how bad it is in the UK, but in Canada even pointing out the patently obvious flaws and strains in our system is nearly political suicide and if you even mention the “p” word you might as well leave the country.

          In regard to your link: these are the types of decisions that those running a social healthcare system are forced into considering simply for minimal effectiveness let alone efficiency. You say the ethos in the U.S. is to help “facilitate informed decision making”; the ethos in Canada is “how do we get that patient out of that bed asap” (because there’s always another one in line).

          In all, I guess my point is that most of the blame in cases like Alfie’s should be on the system itself, not the decision makers who are constrained by it.

          “What to me was infuriating and bone-chilling was the dictate from the courts/hospital that the toddler must die as we see fit.”

          I don’t know if that’s a fair take. Was Alfie not a full UK citizen with all the protections and rights that being one entails? Is it not the duty of the state to consider Alfie as a citizen on par with his parents? If some parents wanted to take their child out of the country to perform a child sacrifice ritual with him, we would demand the state intervene to prevent it. An absurd example, for sure, but in Alfie’s case medical experts nearly unanimously agreed that further treatment was not only futile but possibly tantamount to torture. Does a child (or anyone who can’t speak for them self) not have the right to be protected from this?

          More realistic examples occur in Canada fairly frequently. There have been a few cases in the past couple years alone of parents opting out of traditional treatments for their children in favor of “alternative” remedies (homeopathy, indigenous medicine, and even prayer rituals) where the child in question has ended up dying. The Canadian government constantly finds itself in a catch-22 on this: if they don’t intervene and the child dies they are castigated by one side for not stepping in to prevent the consequences of such obvious quackery, but where they do preemptively act they are often lambasted from the other side about state overreach and trampling on parental rights. I don’t think there’s an easy answer here.

          • Pizza Pete says

            Jeremy H

            You’ve led me to rethink this subject.

            Living in the US I always presumed that with socialized medicine the tradeoffs were openly communicated by politicians and understood by a rational public. That is, the public accepted that a tradeoff of limited costs and universal coverage is that some expensive care with lower probability of benefit will need to be foregone.

            Evidently, from what you say, that is not the case. Instead it seems like the packaged social health ideology begs the question: “You are receiving excellent health care.” How is that? “Because the NHS provides excellent quality health care.” Is that what the media/political/academic construct is for care in Canada? Whatever the ideological marketing for Canada’s healthcare system is, it has been extraordinarily effective in America. On the Left, we imagine you get the availability of Medicare but at a third the price. It’s “The magic of socialism!” not understanding that the US already spends more per capita for the entire population than Canada does. If the US were to reconstitute current public medical spending to cover the entire US population we would need to ration care considerably.

            Anyways, very interesting. I know that the British are very proud of the NHS but at the same time there’s a big market for supplemental insurance for those who can afford it. I’m curious whether a case like this brings that cognitive dissonance to the surface. I also wonder if the NHS has always treated people this way, but now with knowledge asymmetry decreasing and social media these cases are just receiving more attention.

            “I don’t know if that’s a fair take. Was Alfie not a full UK citizen with all the protections and rights that being one entails? Is it not the duty of the state to consider Alfie as a citizen on par with his parents? If some parents wanted to take their child out of the country to perform a child sacrifice ritual with him, we would demand the state intervene to prevent it. An absurd example, for sure, but in Alfie’s case medical experts nearly unanimously agreed that further treatment was not only futile but possibly tantamount to torture. Does a child (or anyone who can’t speak for them self) not have the right to be protected from this?

            I’m sympathetic to this argument but I think we can parse things out a bit. Let’s say you have a tragic circumstance where a child or a young mother has cancer. Well, for most types of cancer (and I’m not an oncologist) the first line treatment is well defined. OK, let’s say you try first line treatment and it fails. There are usually reasonable second line treatments that have some supporting evidence. OK let’s say the second line treatment fails. By the time you get to third line treatment, often evidence is poor and you are grasping at straws. Costs aside, do you go for a third line treatment? Maybe not if it’s painful or otherwise unpleasant and you’re 90 years old. But for a little kid or a young mother, yeah you go for it the vast majority of the time. What about fourth line treatment, fifth line treatment, experimental treatment? Do you fly to Sloan Kettering? Where’s the line in the sand that represents futility and needless torture? Very often this determination is not a matter of clear logic that someone externally can assign. Or should. Generally it’s best when a patient and their family make that determination by coming to an understanding of what their needs and expectations are. A good metric might be, “I wouldn’t do that myself, but it is a reasonable choice?” If the bar is making a reasonable decision versus the “best” decision, you have to presume that Alfie’s parents are being unreasonable to rule against them. And the Italian doctors offering treatment are unreasonable. And that being on a ventilator for a couple of weeks represents a significant pain and suffering burden. Based on this rationale, I don’t believe that Alfie’s parents preference was unreasonable. And this isn’t to say that society has to pay for everything. I’ll add the following – while I like to think that I would have discontinued care if I was in Alfie’s parents situation, I’ve had well educated friends and colleagues in comparable situations who do everything – sixth, seventh, eighth line treatments. I don’t think you can know what you’ll want until you’re in that situation. And there’s a fundamental arrogance in presuming we know best looking from the outside in, and a potential for great evil in institutionalizing this arrogance.

          • Following the course of action prescribed by the British people, the child has ended up dying. Everyone suspected that this course of action would result in the child’s death, but they still went ahead with it.
            Why should the British people’s stance be entitled to more deference than that of the lunatic Canadian parents you are referring to? They both caused, knowingly and predictably, the death of a child.
            From those Canadian parents’ point of view, subjecting their children to modern medical treatments may be worse than death. So they chance everything on unlikely “alternative” remedies (while probably suspecting that this is insane, but still with the hope of a cure).
            From the British people’s point of view, allowing the medical treatment to continue abroad would have been worse than death. So they made the child die.
            The British come off looking rather worse in this comparison.

        • Daniel PV says

          Pizza Pete

          “I’m fairly certain the British are peasants”.

          Quite right. What possibly can us stupid morons know about anything? it’s a good job you Americans are here to sound-off from across the pond completely un-armed with the facts. Just like the war, you guys are here to save us! Yay!

          “What to me was infuriating and bone-chilling was the dictate from the courts/hospital that the toddler must die as we see fit.”

          As a physician, you must have taken a Hippocratic oath? I’m pretty sure the central maxim is “first, do no harm”?

          You are faced with 2 scenarios, where you have terminally ill patient;

          1. The terminally ill patient dies in a medical facility, with high level palliative care which will mitigate pain and discomfort as much as possible

          2. You send the terminally ill patient to another country, where in your medical opinion, they can do nothing to save the patient, but the risk for pain and suffering is increased, and there is the potential for a painful death.

          To reiterate, in both situations, the patient dies regardless. Which one do you choose, staying true to your Hippocratic oath?

          There’s nothing particularly different in the way the laws work in America, the only difference is that in the UK, your tax dollars cover all of the medical costs, where as in the US, that equipment that Alfie was on would probably be charged out at $10,000 per day.

          “All in all, I don’t understand British culture well enough have a handle on how this type of thing could happen”

          I can’t believe that, I’d say you were an unequivocal expert – way better informed than the peasants.

          • Unless you are the one personally sending the patient to another country and perhaps piloting the plane, you are “not doing” anything to the patient, in the second scenario, be it beneficial or harmful. Doing something and allowing that same thing to happen are not the same.

            Conversely, when using force to prevent the patient’s parents from taking him home or from trying other treatments, you are doing something, which is arguably harmful. You are not just letting it happen. You are doing it.

            Thus, the previous post turns the Hippocratic oath on its head, by switching “doing” and “not doing”.

            There’s one more point here that I find relevant — when recommending palliative care, medics are admitting the limitations of their knowledge, so from that point on their opinions should not be given greater weight than those of laypeople.

            Both healthy people and patients, in every possible situation, have died “regardless”. So this is a false dilemma. The issue at stake is whether they died as a direct result of medical actions and advice or in spite of the same.

            Is it still medical care, when the goal is not to cure illness, but to facilitate death or injury? No. The medics who imposed this course of action were only acting as private individuals, not in their medical quality. They were acting “in loco parentis”, because they did not deem the parents qualified to take this decision. They were perhaps acting as agents of the UK government or even exerting powers given them by the British people itself.

            But they were not acting as medics. They were prescribing a decidedly non-medical course of action. Not all medics’ advice is medical advice.

            When medics recommend that, after treatment has failed, the patient should be dressed in green, listen to Beethoven’s music, gain weight, take a cyanide pill, get a tattoo, take up dancing, have his nails pulled, or be “allowed” to starve to death, this is no longer medical advice. When a medic tells a patient to stop talking with his mouth full, this is not medical advice. It may be good advice or it may be bad advice, but it’s not medical advice. Medics are not infallible and not every opinion of a medic is an ex-cathedra pronouncement. Except in the UK, perhaps.

          • Pizza Pete says

            @ Daniel PV

            “You are faced with 2 scenarios, where you have terminally ill patient;

            1. The terminally ill patient dies in a medical facility, with high level palliative care which will mitigate pain and discomfort as much as possible

            2. You send the terminally ill patient to another country, where in your medical opinion, they can do nothing to save the patient, but the risk for pain and suffering is increased, and there is the potential for a painful death.

            To reiterate, in both situations, the patient dies regardless. Which one do you choose, staying true to your Hippocratic oath?”

            OK, I think I can help you think this through.

            Let’s agree that option 1 is preferable. I would counsel the patient to that effect. But presuming they are competent, that they are not psychotic or drug addled or otherwise incapable of making a decision for themselves, I would abide by their choice.

            First of all, I’ve been wrong and I have some humility, a grace which seems to be lacking in England’s class system. Second, just because you don’t understand someone’s reason for doing something doesn’t mean they don’t have a good reason. Third, my job description does not entail making decisions for people who can make reasoned decisions.

            The finances and economics are a separate issue which we can easily separate. I don’t think a requirement of a just society is that every possible treatment must be paid for. And I was fine with the NHS not paying for further care for Alfie that they considered to be futile. See? Easy.

            What I’m not OK with is the paternal, “We know best you imbecilic, ungrateful peasant. Do as we say with your child. The child may die in three ways, here are your options.”

            I’m happy to discuss the shortcomings of the American healthcare system. Healthcare by definition is not a right but a commodity, and socialized medicine is reasonably effective in scaling up basic preventative care access and providing a payment mechanism if someone is hospitalized with a catastrophe. For these reasons I’m supportive of MEDICAID expansion to provide a near universal safety net. As far as the shortcomings of socialized medicine, well there are clearly many that you aren’t keen on discussing beyond Alfie and Charlie Gard’s parents and the 5 million long NHS waitlist and denying surgery to fat people and smokers and so on and so forth.

    • Anty says

      These decisions in the UK are *never* driven by money. As a British Critical Care Physician, I find this American obsession with what the family want, over and above the patient’s interests, bizarre and unsettling. I presume this is driven by either fear of litigation or pecuniary interest in continuing billing for care. I have worked in North America and found numerous cases of bad medicine, which ultimately was the main driving factor behind my returning to the UK. One that sticks out was an octogenarian with metastatic cancer, ventilated because of an anoxic brain injury resulting from a prolonged cardiac arrest, paralysed from the neck down due to spinal secondaries. There was no hope of survival. Her medical team wanted to withdraw care but her family, unable to let go, refused. Her medical team did not challenge this due to fear of litigation. The patient, imprisoned in a hell where she was unable to live yet unable to die, was ventilated for months on the ICU before she finally passed away. This was ‘OK’ because it’s what the family wanted. Her physicians all privately agreed it was a travesty of human rights. I have made it clear to my family that I’ll bloody well come back and haunt them if they ever do this to me.

      Remember – treat the sick, comfort the dying, and don’t get the two mixed up. Unless you live in the US where you lead people to think they can live forever, and then bill for as much as you can

      • Another commenter further down suggests that
        “Maybe the Brexiteers could have donated all that money they were saying Brexit would save is to Alfie’s parents.
        You know, the money they were banging on about on the bus.”
        Despite the obscurity of this comment, it comes through quite clearly that these decisions in the UK are, in fact, *sometimes* driven by money, hollow-ringing denials notwithstanding. To translate: if, instead of moral support, the “Brexiteers” had provided a sufficiently large amount of money to Alfie’s parents, then the situation would be different.
        It’s utterly absurd to say that money wouldn’t have made any difference. Here you have at least one person who thinks Alfie is better off dead and hates “Brexiteers” and Alfie’s parents, but nevertheless agrees with me on this point.
        But let me propose a third point of view that perhaps solves this apparent contradiction: no matter how much money Alfie’s parents had, it wouldn’t have helped, because they were the wrong kind of people and were rubbing those whom they were trying to influence the wrong way.
        In other words: money by itself is insufficient, one also needs the appropriate connections and speech mannerisms.
        Right?

      • Pizza Pete says

        As a physician in the US I can attest to patients making bad decisions. The solution is to help families make good decisions and have patients plan for medical contingencies.

        That said, some people will still make bad decisions, because, well, people are people. Thankfully, the type of scenario that you describe is extraordinarily rare.

        That the font of wisdom stemming from class based British paternalism is the best and ultimate adjudicator of these decisions is at best profoundly misguided.

        If the UK’s approach to health care is so wonderful, how do you account for this type of moral leprosy?

        https://www.telegraph.co.uk/news/2017/10/17/nhs-provokes-fury-indefinite-surgery-ban-smokers-obese/

        The implicit arrogance in your rhetoric necessitates that the Italian doctors are quacks. People in glass houses: the NHS isn’t the envy of the world when it comes to oncology outcomes or acute cardiac treatment, nursing home care, and many other areas of medicine. A lot of this seems like defensiveness related to these major, known deficiencies in the NHS. Consumers know. I have friends in tech and finance who work in London and they tell me that it is absolutely impossible to recruit without supplementary insurance. No one who can avoid the NHS wants to use the NHS.

        I’ll also add that while there wasn’t much to be done for Alfie, Charlie Gard actually would have been an ideal candidate for the type of rare disease treatment his parents were lobbying before.

        Anyways, get used to questions. Knowledge asymmetry is a thing of the past.

  23. Karen Strickland says

    I wonder if Alfie had been one of William and Kate’s children what the outcome might have been?

  24. The author is correct that some Americans did not portray the nuances of the case with great accuracy, however his description of the state of the U.S. law is misleading as best as I can tell as a non-expert-in-this-area-of-the-law lawyer. Apparently, at least in my own state, such parents would have been allowed to move their child to a different hospital if that hospital was willing to receive the patient. http://blog.practicalethics.ox.ac.uk/2018/04/groundhog-day-and-legal-appeals-what-if-alfie-were-a-texan/ The problem I see with the reactions of some English-speaking conservatives is collapsing the issue of the reasonableness of a palliative care approach in this case with the reasonableness of barring a transfer to another hospital. One can respect the medical judgment of the doctors in a particular hospital that intensive care should cease without also believing it is wise to give them the right to block transfer to another hospital in such a case. The proposal from Father Nelson, as described in the OP, sounds reasonable-my impression is that it would result in English cases being dealt with in a manner similar to the rules in effect in some other developed jurisdictions. It is quite possible to avoid conflating a cessation of intensive care with euthanasia without granting hospitals such a broad right to block transferring a patient who can’t communicate.

    • Bill says

      Actually, in the US there was a case a year or 2 ago. I believe it was between MA and CT hospitals. One, the minor’s primary care, said they had X and suggested a course of treatment. The minor and parents crossed state lines for a holiday or some such, minor had to be admitted. The hospital in the other jurisdiction refused the treatment/diagnostic of X and said it was Y. They then brought in CPS and interned the minor in this other state, withholding treatment for X because “their doctors” disagreed with the diagnosis of the primary care doctors in the home state. They refused to allow the parents to transport the minor back to their own tending physicians to continue care because they (this other state’s docs) disagreed.

      • Bill says

        Found it, look up Justina Pelletier. Boston Children’s Hospital held her for 11 months refusing to return her to Connecticut

  25. “the weight of medical expertise favours a course which will hasten your child’s death”
    This is a weaselly formulation. The recommended course of action directly caused, not only hastened, the child’s death.

  26. “a doctor’s professional obligations towards a patient and the parents’ wishes are simply incompatible”

    So this case sets the precedent that, sometimes, a doctor’s professional obligation towards a patient, even a minor patient, can be to facilitate that patient’s death, even against the parents’ clearly expressed wishes and in the absence of any clearly expressed desire to die from the patient.

    I wonder how this precedent will be used. Oh right, we’ll never find out, since British judges are quite liberal with their gag orders and, given how this case has turned out, no British judge will ever again risk such matters becoming known to the public.

    Best not to mention it, really.

  27. Bartek says

    This article is written in a asymmetric way: the British judicial system was portray with very in-depth complexity and consideration, while the opposing voices were portrayed in an extremely simplified form.

    Take, for example, the bizarre suggestion that the Pope and other Catholic protesters does not know the Catholic teaching on the subject. This is, of course, not the case. Two days ago the Polish Episcopate Bioethical Expert Team (which include medics, philosophers and legal experts) issued a statement that the case of Alfie does not qualify as a “prolongation of invasive treatment” and that the British ruling is very misguided on moral grounds by, inter alia, introducing the dubious criteria for the “quality of life”. Of course, one could disagree with their opinion, as based on different axiological assumption, but one honestly cannot claim that only arrogant mob questioned the British ruling.

    There are many other difficult aspects to this case. Reasonable decision maker should take into account what in business is called “contagion effect” – the whole case could heavily undermine the trust of thousands in public care system, which long-term effect consequences could be disastrous.

    The other pretty problematic issue in the whole case is the fact that the British public healthcare ranks, well, rather at the bottom of European healthcare systems, and certainly below Italian or German public healthcare. Thus, the stubborn refusal to move Alfie to Italy constituted, in fact, the stubborn refusal to move the patient from the inferior to the superior health care system.

  28. “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.”

    There is a heavy subtext of class-based animosity to the whole affair, which the condescension- and irony-dripping paragraph above makes quite clear. This is how the British establishment thinks of its subjects — the above sentences most remind me of Johnson’s dog remark.

    Always and everywhere, doctors, lawyers, or other such professionals form a closed caste and tend to close ranks around their own. I can only imagine how a society like Britain’s, which inspired Marx’s theories of class struggle, can exacerbate this issue.

    This young, naive, lower-class, “non-ethnic” couple, who had the temerity to represent themselves in court and to associate with anti-establishment forces like the UKIP, never stood a chance.

    • Really, I think you should have thought a little more before posting. This case had little to do with class and much more to do with understanding of complex medical and philosophical topics. I doubt that you would stand much chance in a courtroom under cross-examination by a well-briefed barrister. The paragraph you quoted was a genuine tribute. The father did well but not well enough because he had been very badly advised by a clique of activists pursuing their own goals which were not compatible with facts or the interests of Alfie Evans.

      UKIP is anything but anti-establishment. Their opposition to the EU is based more on keeping Britain’s class privileges alive than on anything akin to socialist revolution.

      • “The paragraph you quoted was a genuine tribute”.
        English humor is so dry that some people fall for it, though I’m still not quite sure you’re being serious here.
        Orwell was anti-establishment, while Philby was a member of the establishment. Leftists have been the UK establishment for many decades now. Just because no matter how left-wing you are there is someone even further left (probably you would invoke Trotsky in this context as the only “genuine” leftist), it doesn’t mean that Britain’s establishment is not left-wing. Your talk about the “socialist revolution” is nothing but typical obfuscation and/or disingenuous denial.
        Does this clarify things?

  29. Collean says

    Alfie was a true fighter till the end ! I think he would of had a life with the care of is mum and dad maybe he wouldn’t of had a normal life but least he would of been here and the fact this government have the right to decide wether your child should live is absolute disgrace if there kids were in the same boat as Alfie they would get help from other country’s. But when your no one no one cares ! Alfie could of been saved ! Is parents should of had that choice to be is full time carer that’s what they wanted to do! If the hospital intervened when Alfie was struggling to breath he could of been saved instead they watch is dad giving him mouth to mouth this country is a disgrace and Alfie army will carry on it I’ll justice is served on there’s judges who think they have the right to say whether your child should live or die !

  30. Collean says

    Yes uv been a judge if this was your child wouldn’t u seek help wouldn’t you want to no what the true diagnosis was ! Alfie Evans parents haven’t had a true diagnosis. I think judge Hayden should of gave them that I think this world is cruel and these people who have money and live in the upper class above people like us who don’t no everyday really life there life is completely different to our life ! People like Alfie Evans parents should of had that chance to take there son home or here son to seek medical help else were. And yes it’s made me news and yes it’s made world news but the answers aren’t still answered that poor baby should stil be here now he was breathing on is own doesn’t that proof something he wasn’t all brain dead! He was a strong fighter and they was hope there
    But just not enough help ! The law needs to change

    • Your comment shows a breathtakingly arrogant ignorance. That “poor baby”, as your appeal to sentiment describes Alfie Evans, was never able to live unaided and would never recover even basic bodily functions. It was a tribute to the medical staff that he survived as long as he did. Please do some research before posting in future.

  31. The British state is treating its indigenous population as harshly as Australia and Canada treated theirs.
    Isn’t it a shame that working-class Englanders broke off with Labor and voted for Thatcher, Brexit, and now, horror of horrors, are considering giving their vote to UKIP or whatever? You have erred, you need our protection, keep your mouths shut from now on, and let this be a lesson to you! Or else.
    I’m just not sure that this lesson will be taken by its recipients in the spirit in which it was intended. But surely the British establishment has even more convincing arguments up its sleeve, to bring the lost sheep back into the fold.

    • Daniel PV says

      You think that the Labor (sic) party being in power would have resulted in the courts operating any differently in regards to this case? What is it with this sinister anti-global government agenda coming from the US right?

      • Quite the contrary, I think that Labor (sic!) has manipulated British workers so much, for its own cynical purposes, that some of them have completely lost trust in any authority (including Labor grandees here). Hence the current situation. It’s a harsh, but true and well-deserved lesson.
        And if Labor got back into power, it’d treat the indigenous British population even worse, for its “betrayal”.

    • Maybe the Brexiteers could have donated all that money they were saying Brexit would save is to Alfie’s parents.

      You know, the money they were banging on about on the bus.

  32. Agustin says

    What the author, and increasingly European states, do not understand is the principle of subsidiarity, which states that a higher instance (e.g. a judge) must only intervene when the lower instance (e.g. parents) are unable to fulfill their mission.
    The author writes that a judge deciding what is good for the child in a divorce case is comparable with a judge deciding about what was in the best interest of Alfie. I disagree.
    Parents are the natural guardians of a child’s best interest. If you let a judge replace them, except in case of evident parental failure (which I don’t see in this case), the might of the guy with the best lawyers will prevail.
    Even if the decision of withdrawing life support was right from a medical point of view, it was not good from a systemic point of view.

  33. Pingback: The case of Alfie Evans and the best-interests-of-the-child standard - Overlawyered

  34. Pingback: The case of Alfie Evans and the best-interests-of-the-child standard – John Culbreath

  35. A superb and well-argued piece. I am so very glad I am a British subject and not an American citizen. It would be better if we were British citizens of a democratic republic, but at least we have the NHS for now. The parents in this case were well-intentioned and desperate but had lost sight of the interests of their own child. The judge acted correctly and courageously, in the face of tabloid lies and of public hysteria.

  36. Daniel PV says

    The right in America have made idiots of themselves in regards to this story, and have shown themselves to be every bit as moronic as the left (conservatives usually accuse the left as being irrational fools who let feelings trump facts). I’m not entirely sure what the right’s agenda is here. Is it just an excuse to attack nationalised healthcare? Or attack Europeans? (The Americans seem to be increasingly hostile towards the UK and Europe). The kid was done for, that’s why a decision was made to cease palliative care (he’s going to die soon anyway, so let’s ensure its as comfortable and painless as possible). What’s hard to understand about that? Shapiro has been one of the worst mouthpieces in regards to this – spouting utter nonsense clearly ignorant of pertinent facts of the case, with a complete lack of understanding regarding the laws in the UK and Europe, and the expertise of the staff at Alder Hey hospital. I’ve never wanted to distance myself from the right as much as I have during this case. Now a bunch of oddballs have been writing silly messages on the Merseyside Police FB account (Americans with no idea what’s going on in Merseyside) posting stupid comments about local cases. Disgusting. I now see why the left see these people as abhorrent.

    • “I’m not entirely sure what the right’s agenda is here.”
      It’s simple: leftists are the ones who stay behind in Omelas.

  37. Pingback: No, we don't need an Alfie's law. - BarristerBlogger

  38. Pingback: No, we don’t need an Alfie’s law. – Doris Pham

  39. Zachary Reichert says

    Well, that was fairly comprehensive.

    My libertarian-leaning friend gave me a biased little blurb about it, which as always I took with a grain of salt. Glad I did. There are no simple, one-bit answers. So a few thoughts:

    If I were in the parents situation, I would not have pushed for continuing treatment that had no chance of doing any good. I think they were making a poor choice.

    I think that they should have had the right to make the stupid choice, rather than having it dictated to them by their government.

    That Britain has a nationalized healthcare system complicates things. Who, then, has ultimate authority over medical decisions – the parents, guardians, and patients; or those who hold the purse strings? It appears that in Britain, that authority has been ceded to the NHS.

    Ultimately what we have here is a tragic situation. These virulent reactions really tell us more about the people making them, than anything about the situation.

    • Jonno says

      Clearly the patient should, and does, have the final say. When the patient is unable to voice an opinion then medics and relatives must come together and agree what is best for the patient, and agree a course of action in line with what the patient would want. Please note the patient him or herself in in the centre of the decision making, and the role of the relatives is to guide medics on what the patient would want, NOT what the relatives themselves want for the patient (although this usually amounts to the same thing). When this discussion breaks down and the goals of relatives and medics are incompatible then there must be independent arbitration, which is done through the courts. This is not unique to the UK, and this process, which is underpinned by ethical principles of recognising the individuals rights, exists in many countries around the world. Including the US.

      Personally I am very glad that I live in a country where I can be assured that if I am rendered incapable then my healthcare can be directed by someone with a dispassionate view of the facts, and not by a long lost brother that I haven’t seen for 10 years but then turns up and starts making unreasonable demands based on nothing but pure emotion, driven by guilt/contents of a will/his own religious convictions etc

  40. Oliver says

    It’s ironic, being accused of being a peasant by the same Alt-Right that wants to erode every advance of Western civilisation since the Renaissance. The modern Far-Right claims expertise in neurodegenerative disease because that, metaphorically, is exactly what the Far-Right is.

  41. Pingback: No, we don’t need an Alfie’s law. – Legal News By Roger

  42. Bill says

    To all those who take the position that the medical experts made the decision, not the judge, and that they had the best interests of the patient in mind, who then heap scorn on those who disagree or on the actions of the parents, I challenge you to look up the case of Justina Pelletier. Boston Children’s Hospital medical staff disagreed with diagnosis of the medical staff in Connecticut at Justina’s primary care. Since they disagreed (Justina was in Boston with her parents on a trip), the State (through CFS) kept her at Boston and withheld the CT recommended treatment and effectively took custody. The CT medical professionals had years prior diagnosed a disease and had treatment in place to mitigate, the Boston medical professionals disagreed and insisted she had a mental problem instead. That case is an exemplar one of why “some doctors said this, so the judge did that” is not as cut and dry as one would think. Alfie may have had irreparable brain damage, but in that case what did the facilities in Italy offer since they were more than willing to have him transferred to them for further care — but the NHS prohibited the parents, on the own dime or the dimes of donors, from taking the Italian’s up on their offer. What if a hospital in the US had offered an experimental stem-cell treatment as a possible offering? Sorry, NHS & the judge says no.

    Ironic that the Euros blast the US healthcare system as bass-akwards and bad because it isn’t socialist but they do this while the US is now passing rules allowing patients to opt-in to experimental protocols not accredited by the FDA.

    • To all those who take the position that the medical experts made the decision, not the judge, and that they had the best interests of the patient in mind, who then heap scorn on those who disagree or on the actions of the parents, I challenge you to look up the case of Justina Pelletier.

      In which case you’ll find an entirely different case in another country with a different health care system and a different legal system.

  43. I have not followed this case closely but wasn’t Alfie born healthy and then didn’t he then develop seizures after his two month vaccines? Was there a possible cover up here?

  44. Aziz Alrafi says

    I had a case 15 years back thanks God i took my baby away the British law is cruel drs play god.

  45. Aziz Alrafi says

    All the comments here talking rubbish wont say this if its ur kid in islam as muslims we dont or by Allah’s law are not allowed take off any life support. Ethically it was all wrong. They talk bad about islam and Muslims the religion we follow sustains life all over saudi arabia u find many kids left on life support as its a rule of Allah god.

    If this kid was in saudi he will be alive today shame on uk laws

  46. Chris says

    this isn’t about QAL and fighting religious (aka idiotic) doctrines. not allowing best possible treatment organized by the parents – FOR FREE shows what too many judges and doctors always have been; wannabe gods
    the individuals’ interests are not the state’s business!
    if that were the case, children would learn math and reading at school, which they don’t unless their parents teach them or pay someone to do – after school.
    when I called the police after a break-in, they don’t even come to file a report, they told me to go ahead and call the insurance company.
    so don’t tell me the state takes care of everything. all they do is take my taxes to pay forward to the next election campaign or pay off their ‘dept’ from the previous one.

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  48. Mikefive says

    The article supports the premise that the legal system looks out for the best interests of the child. I would love like to see the same author’s assessment of the Charlie Gard case, where the doctor opinions were NOT unanimous. Would they consider the opinion of a doctor from outside the UK?

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  51. Constantin Draghici says

    I am also a lawyer – albeit in a different country – and wish to share my reaction to the above article. Clever advocacy also involves the skill of mudding the waters creating doubt where there should not be any. In this particular instance, the author begins by stating that court intervention based on the principle of best interests of the child has been long established at common law and English jurisprudence. That arbiter function emerged where primary caregivers where at odds with each other on that subject or to prevent abuse. In this case, the court had to rely on the notion that prolonging the life of this baby was a form of abuse (even if not conscious) on the part of the parents. How is that argument constructed? One witness doctor says the baby is unlikely to feel any pain but one can’t be certain, another points out that this is uncertain because of the child’s inability to communicate and that being fed through a tube is not “comfortable”. How in the world does one jump from this to abuse justifying a court taking over parental responsibility? To do so- the court has to find that transporting the child and keeping the child alive a little longer while undergoing some experimental treatment was an act of violence that requires court intervention to override the parents’ natural role. Do not be fooled by the smoke screen of making generous overtures about how splendid and through and skillful the father’s advocacy was. The purpose of that smokescreen is to induce a false sense that the following advocacy is a balanced and judicious balance of facts – rather than skillful one sided advocacy. To support this theory, the author had to denigrate and question the involvement of various doctors (essentially calling them charlatans by association). You see: one of the Italian doctors made perhaps a false claim – but you reader are supposed to conclude that they were ALL charlatans, that the hospital offering an alternative treatment or at least an alternative point of view, and the Pope himself fell pray to the charlatanry instigated by anti-gay/anti-abortion American zealots and by well intended (?) parents willing to extend the life of their own child. It is a tour de force to attempt to argue the charlatanry of an entire institution (such as both facilities in Rome and in Munich – but this is what the skilled barrister sets out to do. The fact that all doctors agreed with respect to the diagnosis or condition of the child – is used in a slight of hand aimed at making the reader believe that there was also perfect consensus with respect to the merits of experimental treatments. The accent falls on the hardship of transport. Why? because there is an internal contradiction the current hospital needs to by pass “why now and not two weeks earlier?” You can not push your argument so far as to suggest that this hospital has done something wrong prolonging Alfie’s life this far. You see, the ambulance trip will not be comfortable – maybe – so let’s ignore the scope and objective of that trip. Two or three other slights of hand follow in quick succession: 1) false legal advice that parents can decide what doctor should take care of their child (this is framed as a law student with the usual bad association saying in the letter that the hospital can prevent discharge into the hands of a trained professional doctor (is it really so – and if it is does the reader comprehend the implication of this idea?) – If the parents came to the door with a shaman and demand the discharge of the patient – it would have been one thing, but this is not what is alleged to have happened. They arrived with trained medical professionals and proper safe equipment. Bottom line is that the issue needs to be persuasively packed to make the parents look bad and the hospital “possession” of the patient the equivalent of a natural right. Obviously this railed up well wishing Americans for whom the power of the state does not extend yet to having no choice when it comes to medical care provider; and 2) An emergency “habeas corpus” (which in legal terms concerns the ability of the state to hold on to the body of a person – something clearly happening when the hospital refuses to release a patient) may have been improperly brought – but was not “non-sensical”. It was the heart of the matter: who has the right to hold and manipulate the body of Alfie to the point of killing him by dehydration. Maybe the legal student, or the parents, or the entire community incensed by what was happening did not formulate their application properly, but what a shame to call it “non-sensical”; 3) Forget about the merits of the issue at hand and pay attention to threats received by the good doctor with the iron grip as if it has any kind of bearing on the issue at hand. The point of this third one is to dissipate your attention: “hey! Alfie and his parents are not the only victims here – there are others who suffer from one thing or another”. Back to the Pope: His Holiness must be confused supporting the parents and offering transportation because in another context he suggested that pointless treatment may not be good idea. The pretense that this is a logical argument must be immediately discarded: it is equally reasonable to conclude that, instead of being confused, the Pope has been persuaded that the proposed treatment was not pointless. But this is not what the reader is asked to conclude. Given Italian citizenship? Must be a ploy to argue that parents may have choice as between the two states’ medical services. No such thing in Britain – once in the dead clutches of the NHS – it has your body and soul at their disposal.
    So what is the reader left with after all this smoke clears up? The alternative treatment appeared to be mostly palliative in the sense that no improvement was to be expected in Alfie’s condition and someone – somewhere did not object to extending his life such as it was and was prepared even to empower the parents to continue providing life support at home. Keep in mind, however, that the real issue that gave the Court any power of decision on the matter was not the preservation of life – but rather the questionable related discomfort.
    The venerable Barrister concludes that that Courts are the appropriate arbiters for resolving “moral dilemmas” – which was the real focus of his entire argument. That tends to be an attribute of the Sharia Court system – but ‘enlightened” progressive courts in the West feel increasingly compelled to become “moral arbiters” as opposed to legal arbiters (which was the original social compact on which they have been established). This fits well to a general expansion of state powers that no longer sees the parents as responsible moral agents, but rather an impediment to raising well children and taking decisions about their care. Fittingly, this conclusion follows some trashing of American conservatives and their outdated ideas.
    I am all for forceful – creative – and even exaggerated advocacy in court. However, when unleashed on unsuspecting public under the guise of “legal expertise” it is no longer the same thing. I am deeply concerned about the publication of this piece in Quillette, although I understand how it may escape the censure of the trained eye.

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