Press Release: Alfie Evans Case

by Dominic Wilkinson

@Neonatalethics

In the light of the media attention today, I have gathered together some of the material relating to the ethics of this case

 

Previous blog posts:

Groundhog Day and Legal Appeals. (What if Alfie Were a Texan?)

Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…

Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case

Medical treatment disputes and the international second opinion

See here for ethics commentary and resources on the Charlie Gard case.

 

Below are responses to some of the questions commonly asked in relation to Alfie’s case

The doctors don’t know what is causing Alfie’s illness. Why do they want to stop life support?

The exact cause of Alfie’s condition is not known – there is no diagnosis, which can make it hard to know what the future holds. However, in Alfie’s case, the future, sadly, appears clear. Multiple medical specialists gave evidence in the case. Brain scans have shown severe deterioration over time. The judge in the original court hearing described scans showing that large areas of the brain have been “wiped out”. Alfie has been totally dependent on life support. He has profound neurological damage. There appears to be no prospect of recovery, and no specialists in this country, or overseas have identified any tests or treatment that have a real chance of making him better.

It is devastating news for any parent to hear that their child is gravely ill.  It is especially difficult in situations when doctors cannot be sure of the exact cause of the child’s illness. However, sadly, despite all of our advances in genetics, it is still sometimes impossible to make an exact diagnosis in a seriously ill child.

 

Where there is life, there is hope? Shouldn’t Alfie’s parents be allowed to hold on to hope?

It is very understandable for parents to want to hold on to hope, to exhaust every possibility that might make their child better. However, sometimes the sad fact is that medicine cannot cure, or improve a child’s condition. Sometimes the only hope that remains is that a child’s suffering is not prolonged.

 

Overseas doctors have offered treatment for Alfie, why shouldn’t his parents be allowed to take him overseas?

In a previous blog post, I discussed some of the reasons why evidence from overseas experts sometimes is relevant, but sometimes is not relevant to cases of disputed treatment.

In another recent case, the judge noted “There is a world of difference between a foreign expert who may have relevant medical or scientific expertise … and whose evidence may … be necessary to resolve the proceedings justly, and a foreign expert who simply takes the view that the medical, moral or ethical approach to these issues in this jurisdiction differs from that in their own jurisdiction or their own practice, and that the approach in their jurisdiction or their own practice is preferable.”

In Alfie’s case, none of the foreign experts have offered any new treatment, or any new outlook for Alfie. The Italian specialists have apparently indicated that they believe that his care should be palliative.

However, some of the overseas experts appear to have different ethical views about how best to care for a child who is dying. They appear to believe that life should be prolonged at costs or that parents are always right when it comes to decisions about medical treatment for a child.

That is not the ethical framework that doctors and the courts use in this country. Medical treatment is often helpful for a child. Parents views are extremely important for decisions about treatment for children. However, sometimes the sad fact is that medicines or machines are not helping a child, and, in fact, are doing more harm than good. Sometimes the sad fact is that parents do not know what is best for their child. They are led by their grief and their sadness, their understandable desire to hold on to their child, to request treatment that will not and cannot help.

In that circumstance, it is wrong to continue to provide those treatments, and doctors and the courts in this country have felt that they should not be provided, even if parents would wish them to be.

 

Alfie is breathing by himself, does that mean doctors were wrong?

In the last few hours, news reports have indicated that life support has been withdrawn from Alfie, and that he is breathing by himself.

That does not mean that doctors were wrong, and it does not mean that breathing support should be restarted.

The reason for stopping the breathing machines is simply that his serious condition is not treatable, and will not improve. He has deteriorated over the many months that he has been on life support. The breathing tubes and machinery used to keep Alfie alive can cause discomfort and even pain to children. Given the nature of Alfie’s condition, the doctors have wanted to provide him with palliative care, focused on his comfort, and focused on making his remaining time as good as possible.

Whenever I provide palliative care to children, I talk to families about uncertainty. When we stop breathing support for a child, sometimes the child will slip away very quickly. Sometimes, they will be with us for minutes or hours, or even days. Sometimes, when the breathing machine is removed, it becomes clear that actually the child didn’t need the machine, and they remain with us for much longer. When that happens, it is not something to fear, or to regret, but an opportunity to embrace – to spend more time with a child, without the machinery, wires and medical interventions in the way.

Providing palliative care is not euthanasia. It is about providing “intensive caring” rather than intensive medical care. It does not end the child’s life. Rather, it supports the child, and the child’s family, for as long or as short as they remain with us.

 

 

 

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55 Responses to Press Release: Alfie Evans Case

  • MM says:

    Competing versions of fact exist on four primary fronts: i) Medical; ii) Ethical; iii) Legal; iv) Existential.
    1. EXISTENTIALLY: AE’s LIFE exists this moment. Next moment it may not. Death is an undiagnosed reality. Life is an undiagnosed reality. Should AE’s LIFE be extinguished, the three other fronts are moot. They wither.
    2. ETHICALLY: Fact is this is a fight to death – between the PRO-LIFE and DIGNITY IN DYING camps. Each have their own myopic and ridiculous ETHICAL argument corpus and protocols, solely to further their gruesome medieval cultures in the hope of victory in each such case case of most vulnerable life. “Suffering”; “desperate sadness”; etc. are all key levers and drivers, which coincidentally underpin all key facets of human life (economic; academic; medical; legal; vacation; etc.).
    3. MEDICALLY: If the aim is to sustain life, medical procedures are available. If the aim is to take life medical procedures exist. The key is the direction in which the honoured Legal DISCRETION “blows”.
    4. LEGALLY. Here the matter is entirely DISCRETIONARY. Judge not JURY. Associated Provincial Picture Houses Ltd. v Wednesbury Corporation [1948] 1 KB 223 is of essence. WEDNESBURY UNREASONABLENESS:
    A. in making the decision, did the JUDGE take into account factors that ought not to have been taken into account? or
    B. in making the decision, did the JUDGE fail to take into account factors that ought to have been taken into account? or
    C. is the decision of the JUDGE so unreasonable that no reasonable authority would ever consider imposing it?
    *A. Plead that the JUDGE introspects, to truly extract himself from both the PRO-LIFE and DIGNITY IN DYING camp. This would be a fatal factor is exists.
    *B. consider the factor that the only true TITLE given by JUDICIAL discretion till date is the relief is to release the doctors and medical staff from the intense stress, guilt and risk of unethical/immoral extinguishing of life and the saving of financial resources and the protection of fair name. Are these relevant to the Judicial decision on this LIFE?
    *C. While the child is undoubtedly a British citizen and the Italian citizenship has come about in an unsavoury manner, certainly the child is undoubtedly EUROPEAN. Supranational benchmark of “reasonable authority” and norms certainly exist. Can the JUDGE stand tall and step up to the plate. That is the real challenge. Sincere wishes to the good intentions of all camps on all fronts in these serious decisions and realities. Hoping reasonableness prevails. How would Lord Greene, Lord Denning and Singleton, J have seen these circumstances?

  • Lynn Laidlaw says:

    Thank you Dominic once again for a clear explanation of all the complex issues in this case.
    I wish the debate was much less polarised and people took time to read and understand the court judgements and articles such as this.

    • MM says:

      Yes, thank you Dominic, for exposing some underpinning issues and thank you Lynn for finding them clear explanations.

      How we pine for ALL the readings and writings in ALL collective knowledge accumulated in the existence of mankind, worldwide, over the millennia, (which factually is rather flimsy, scruffy and superfluous) could form one iota of “all” the fathomless “complex” issues in this case ( in the fleeting “Life” of this child – which certainly his parents brought to him).

      HUMILITY is of essence.

      I’ve not directly witnessed or heard Anthony Hayden, J. or his comments or conduct of this evening. We cannot envy him. No one should be placed out at ocean in a beaufort 12 storm as he or the doctors and family have been. It’s so easy to get it wrong. But that’s Life. Certainly similar is happening all over the world.

      One insurmountable factor today, for the current custodians of the “best interest” arguments (who coincidentally also held possession over AE’s body) perhaps was to get boxed into the corner where they (current custodians) would have to totally relinquish custody, power, control and jurisdiction over the body of AE, to competitors who, in reality, are diametrically opposed them. One insurmountable factor for the other side was to box the current custodians into that corner senselessly, without providing an escape route that was earnestly being sounded.

      The silly St. Peter’s and St. Paul’s skirmish reality, or if you like the silly Left Hand Drive and Right Hand Drive reality. How we wished the world was not so banally polarised – why couldn’t all cars just be RHD and all carriageways be oriented to the left and do things the way we have calculated and proven to be correct!

      Perhaps we should pause a moment in silence and ponder INVICTUS (William Ernest Henley):

      Out of the night that covers me,
      Black as the pit from pole to pole,
      I thank whatever gods may be
      For my unconquerable soul.

      In the fell clutch of circumstance
      I have not winced nor cried aloud.
      Under the bludgeonings of chance
      My head is bloody, but unbowed.

      Beyond this place of wrath and tears
      Looms but the Horror of the shade,
      And yet the menace of the years
      Finds and shall find me unafraid.

      It matters not how strait the gate,
      How charged with punishments the scroll,
      I am the master of my fate,
      I am the captain of my soul. ”

      Perhaps AE is demonstrating to us that no one, but the “I” is the master of each respective “soul” and of that “Life”.

      You never know, perhaps this ‘bambino’ may just dig in and choose to stay in England till an adult. Perhaps, he may indicate that in existence the difference between 23 and 723 and 72300000 is not so much! Perhaps 24000 months from now all of England will worship and consecrate interplanetary shrines to Bambino Alfie!

      Since it’s essentially jaw-jaw, perhaps ludicrous “creative” licence may serve well to flag out and accentuate the flimsiness and fragility of the most entrenched academic theories ?
      (btw I write from Italy, with respect to you all, so kindly bear with typos and errors in language and writing)

    • Kenneth Mitchell West says:

      Are you so stupid that you bigots cannot possibly understand the pain that the family is feeling for their child that is going to die because some stupid government thought it dignifying to murder a child?! It should be the PARENTS RIGHTS to take their child from the Hospital! Just because that child was given birth to in the UK they do not have the rights to hold a child against the parents and their families will, in what end is that ever justifiable could you please explain that.

      • MM says:

        Let try to understand the bottom line in the discomfort expressed above. Perhaps, what is really is being said here:
        1. is state sovereignty so extreme a notion in International (Humanitarian) Law (CRC and other HR law) that the “shield” of “best interest of the child” (in this case one human/one citizen of that state) can, concurrently, be converted into a “sword” against the “best interests of the parent” (in this case two human beings/two citizens of the same state), particularly when the “harm” for which the shield has been constructed (harm allegedly being experienced by the child) lacks probative empirical material evidence (and is a negative notion – no medical scope of improvement/ over treatment / thearepeutic nihilism, etc. – also without and empirical and practical attempt) while the harm being experienced by the other two citizens is indefeasibly manifested physically, psychologically, financially, in deprivation of employment opportunity, pts, parental rights, etc.) ?
        2. Perhaps International Law (CRC, etc.) and national statutory laws should be amended to codify “best interest of parents” equally with “best interest of state” and have a jury ( and where a European citizen is involved the jury comprise of 28/27 citizens from each member state) and not a case-hardened judge decide ?
        3. Would “best interest of hospital”; “best interest of judge”, etc. become eligible for inclusion in such amendment?
        4. After such amendment, who would police and enforce any judgement if a state government decides and somehow to simply ignore it and adamantly proceeds with what it thinks fit? Who would become liable for any obstinacy? Would Pinochet jurisprudence (R v Bow Street Metropolitan Stipendiary Magistrate, ex parte Pinochet Ugarte 3 WLR 1456 (H.L. 1998)) then become the accepted norm in such cases?

        Well, perhaps Alfred Evans and Charles Gard and their parents have opened both opposing international camps (PL v.DID) to serious rethink and observation.

        • MM says:

          Error corrected:
          2. Perhaps International Law (CRC, etc.) and national statutory laws should be amended to codify “best interest of parents” equally with “best interest of child” and have a jury ( and where a European citizen is involved the jury comprise of 28/27 citizens from each member state) and not a case-hardened judge decide ?

      • Lynn Laidlaw says:

        It’s not parents rights though, the rights of the child are utmost in U.K. law.

        I would question the motives of any parents who feel the need to argue in a court of law that they have unfettered rights over their child. Where does that end?

      • Liz Copple says:

        I agree with Kenneth….100%!

  • Sarah Tonge says:

    Funny you are, because from where I’m sitting, and I’m ex pharma, Alfie is vaccine damaged. Oh you Oxford idiots, you haven’t got a clue have you.

    • Lynn Laidlaw says:

      Evidence base that Vaccines cause catastrophic neurodegenerative Disease?

      Now all we need is the appearance of Godwin’s law……..

    • M Galea says:

      Give us your evidence for this statement please.

      • M Galea says:

        My last cooment is directed at Sarah Tonge’s statement.

      • Amy chandler says:

        He was born with no complications and symptoms only started after 8 week vaccines
        Also ah where keen to withdraw his life support just before his 2nd birthday which would have been 9th may because of compensation would have been due at aged 2 to all vaccination injury victims

        • Amy chandler says:

          Also being on a ventilator for long periods of time causes respitory trauma so therefore a trachostomy must be used instead which was not given to Alfie
          Also he was not cared for adequately, his tubes where left unchanged for long periods causing mould in the tubes, unexplained Injuries also noticed by the parents

        • Lynn Laidlaw says:

          There is no evidence that vaccines cause Neuro degenerative brain disease. If you are going to post ludicrous statements like that then you need to back them up scientifically.

          What do you mean by “ respiratory trauma “. A tracheostomy is just a way of facilitating ventilation, he still mould have been ventilation dependent.

          What “ tubes “ had mould in them?
          I have seen the pictures of the so called abuse. Alfie was on diuretics so it’s no surprise that he flooded his nappy. Where is the evidence in a photo that he was left that way for any length of time?

          All ITU patients have secretions from their nose and mouth, sometimes blood stained, it can’t be prevented. Again how does a photo of that prove neglect?

          As tomthe ridiculous notion that someone burnt him, in a unit with piped Oxygen? The whole unit would have become a fireball.

          Shame on you for posting allegations that you can’t back up with fact in any way.

  • Marie Harrison says:

    I think one of the perplexing aspects of this case, as well as that of Charlie Gard, is the invidious position in which the law appears to place the child, their parents and the health professionals. Responsibility for the child has been taken away from the parents, who are the natural guardians of his best interests, unless it can be demonstrated that their proposed actions will harm their baby. The idea of ‘suffering’ is problematic: in the case of Charlie Gard, it seemed to me that there were contradictory arguments that the child had virtually no cognitive function and yet was likely to suffer as the result of his parents’ proposals to move him, either for treatment elsewhere or home. Ultimately, the argument was made that the ventilator could not be manoeuvred through the doors of the house. In the case of Alfie Evans, he is no longer receiving ventilatory support: why, then, should he not be transported home or, indeed, to Bambino Gesu, if his parents wish this and it will not make his predicament worse. I feel that the medical team has over-reached and has painted itself into a corner perhaps unnecessarily. It is one thing for them to decide, in all good conscience, that they can offer the child no more active treatment: it is quite another to move to prevent the parents seeking supportive or active care from an alternative source.

    • Lynn Laidlaw says:

      If the medical team has overreached or painted itself into a corner then surely the Courts would realise this and overturn the ruling?

      I think it’s telling that none of the appeals were on medical grounds ( that the medical evidence in the court judgements were wrong ) but on points of law including the ridiculous notion that parents should have unfettered rights over their children.

      How could the safety of any NHS staff be assured if Alfie went home? The Father is bringing a private prosecution for murder against the Dr’s involved, there are comments on the army Facebook page with links to military mercenaries to “ break him out “, people saying get a gun and take staff hostage etc. We have already seen family trying to storm the PICU and a mob trying to get into AH.
      The Italian Dr’s are only offering palliative care, I suspect to facilitate the transfer he will need to be re intubated, how is that in Alfie’s best interests?

      The sad fact is that Alfie is dying of a horrible, unfair, Neuro degenerative Disease which has wiped out whole structures in his brain. He can’t see, hear, feel, react or gain pleasure from anything, he is far from a “ healthy healthy boy “. As far as I can see the Courts have viewed all the evidence and made the decision that they feel reflects his best interests. Alder Hey are to be admired, they have been under siege and it would have been much easier to have given up. It’s not pig headedness, they truly believe that morally and ethically they must do their very best for him and the courts have agreed.

      The hipoocratic oath talks about the burdens of “ overtreatment “ and “ therapeutic nihilism “.

      • MM says:

        “If the medical team has overreached or painted itself into a corner then surely the Courts would realise this and overturn the ruling?”

        “surely” – I beg to differ. Countless miscarriage of Justice cases provide evidence of my position. The neighbour of my forefathers (Galileo) also bears testimony to this. Trump is talking today of overturning Jack Johnsons conviction of so long ago.

        ” the ridiculous notion that parents should have unfettered rights over their children.”. I differ with this too. My earlier posts elaborates the basis why I differ.

        I agree that threats and actions of harm to staff are absolutely counterproductive and unacceptable.

        The happy fact is that Alfie is Living not dying. If I was intubated for so long and made totally dependent on that form of substinence for so long, I may well have died with wilful denial of substinence and nutrition for the similar period.

        Perhaps we should ponder the mercuric character of “ overtreatment “ and “ therapeutic nihilism “ which mean different things to different social groups and individuals over different historical timelines. Correct me if I’m wrong but at the time the hippocratic oath was first pronounced, one form of treatment was to bleed the patient. Easily seen why “overtreatment” may have been “talked about”.

    • Liz Copple says:

      Agree 100%

  • MM says:

    Unfortunately my post of 3:19 p.m. today has been “moderated” by entirely deleting every trace of it.

    May I suggest kindly that to moderated any unsuitable part/or all of the text could have been done by deleting the inappropriate part/text. The post and it’s header and time stamp could have been retained, so other participants in the debate know I wrote and sent to you and in fact posted it.

    Your esteemed moderation could then contribute to my understanding and perhaps also the understanding of a larger audience, also in Italy and elsewhere.

    My email service is temporarily down and not accessible. So if you have communicated to me in private I have not received it till now but will let you know as soon as I see it.

    In case you desire I stop posting you may tell me so on this blog and I will humbly oblige.

  • MM says:

    Oh! the 3:19 p.m. post is back on now…awaiting moderation…the deletion was temporary!

  • Marie Harrison says:

    Lynn, thanks for your thoughtful response. My point is that the law is not really the instrument to deal with this and may be over-deferential to medical practitioners who, I do not doubt, believe they are acting from the best possible motives. I can see, too, that the medical team may feel that they have exhausted all their persuasive powers, but the child has parents who should be the final decision-makers here. I have some sympathy for the American system which recognises the primacy of the parental role in situations such as this, but recognise that there can be drawbacks with this too. The problem is, I think, that the parents feel disempowered (and, of course, they have been disempowered and must feel that their role has been purloined by medical staff). The child is now effectively outside of their care and consigned to that of the state. This is why we are seeing the anger-driven behaviour which, I agree, is not helped by the social media and the press. The heat needs to be taken out of the situation and the child allowed to leave the hospital in the loving care of the parents. It is not the parents’ fault that the Trust took this to court: they should not be penalised for the consequences. With regard to the proposed prosecution for attempted murder, I think that this may have been driven by others who have a wider philosophical or political motive and agree that it is a dreadful development and confirms my belief that all parties should have desisted from legal engagement.

    • Lynn Laidlaw says:

      Marie,

      I agree with some of what you say, court really isn’t a satisfactory outcome. I know that these decisions are made daily up and down the country in ITU’s and PICU’s, it’s very unusual for it to end up in court. I also know that no one makes these sorts of decions lightly.

      The parents could have taken it to court, it wasn’t just the prerogative of the Hospital. Whilst I would agree in principle that the law isn’t the right instrument I am not sure how the rights of the child can be upheld in letting the parents be the final decision makers.
      Hard cases make bad law, do parents always make the right decision for their children? Would we agree on every scenario? Should parents have the right to refuse treatment for their children due to religious or moral objections ( it’s the same legislation that’s used ).

      The parents have presented their side of the argument and have arguably been less than honest with their suporters, the NHS staff who are being abused have no right of reply due to confidentiality, how is that equitable?
      My overriding concern is where this is all going, the next time will someone actually turn up in a PICU with a gun to take a member of staff hostage? If you were a paediatric Dr or nurse would you want to work in PICU and be subject to all this? GOSH haemorrhaged staff after the Guard case, Dr’s were sent e mails threatening the lives of their children. The unintended consequence may be that no one wants to work in PICU or children like Alfie may not get life support in the first place.

      • MM says:

        Perhaps it may help to look at it the other way round:

        The first most critical decision, to create the child, vested exclusively with the parents, no one else. That was no less a problematic and equally hard decision.

        Humanity still hasn’t got to the point to accept the norm that mandates a licence or legal guardians or courts “best interests” determination for that first decision.

        Neither can national notions of revenue or enterprise, etc. risk precluding a “Bill Gates” or “Stephen Hawkings” or “Michael Schumacher” from being born for lack of prior state or medical or ethical or judicial or any other mandate. The parents need to be persuaded and so often they are with common sense.

        With that yard stick, I would like to see valid basis why and how anyone, including the state, acquires Locus Standi to interfere in anyway with the settled norm, that end of life decisions in such publicly exposed and publicly “supervised” cases vest exclusively with normal sincere parents. I have no problem in giving them that respect and basic human dignity.

        It may a point to ponder though, to have the Jury service elect a Jury to supervise the decision.

        If we chose to bring exceptions (of habitually errant individuals who threaten etc.) into the debate, to base our decisions to decisively change the norm, then we throw ourselves into the quagmire of chaos where varying exceptions become the norm based on whims and fancies of the “haves” to the distress of the “have-nots”.

        To put it in a more linear format: “white” elephants and black panthers are the exception, but to decisively rule out ( and refuse to accept) elephants being grey and panthers from being spotted, and instead institute an authority to determine which colour of the rainbow each panther or elephant will ultimately exist as (and for how long etc.) (only because we have the genetic engineering and scientific means to do so) to me seems illogical and a particularly slippery slope fraught with much peril.

        We may have the power and choice to tread that slope, but to compel others to do so, would that be ethical?

        • Laura Riley says:

          Thank you MM for your wise replies. You state what I have been inelegantly trying to express on other forums. The legal intervention into this cases seems to have grown exponentially and much of the blame for this can be placed on the Childrens Act 1989. That act was introduced in response to child abuse, it wasn’t written with good parents in mind. Unfortunately it has now spread it tentacles into areas it simply should not have been allowed to enter. What is at stake here is the primacy of the rights of the parents over their children as opposed to the State’s rights. The UK medical profession and the UK courts are increasingly interfering in private family life and using as an excuse “the best interests of the child”. But who decides what is in the best interests of the child? Increasingly not the parents and this is a very dangerous development. Surely those who brought the child into the world and who love the child the most are in the best position to decide what is in their child’s best interests? That we are even being forced to argue the case for the rights of the parents is shocking.

          • MM says:

            Perhaps, what’s of essence is the early grasp (by each protagonist) of the age old saying of wise men:

            “When elephants battle, it’s the grass that gets trampled.”.

            Taking humanity as step further, is perhaps to focus on assisting the “elephants” reconcile and live in harmony. Perhaps, in this case overcoming critical legislative errors of the past with human faculty may be worth re/visiting.

            Normally International Legislation gets transposed into national laws by ratification and even later legislative acts of national parliaments adopting the international legislation w or w/o national derogations. (The UK HRA 1998 is one example, for UK)

            However with the CA1989 that you mention, it may be worth noting the sublime fact, that the process appears to have been reversed! The ICRC of 02 November 1989 (accession by General Assembly resolution 44/25 of 20 November 1989 entry into force 2 September 1990) appears to have adopted the CA1989 and then distributed it worldwide for ratification and adoption by national parliaments.

            It’s worth parsing through the CRC to see that beginning with Art 3(1) etc. “best interest” is mandated as a central tenet. Perhaps the defects of the CA1989 have become problematic for the whole World, thought this reverse process in the CRC.

            Legislations have their frailties. They’ve drafted by women/men (and word-smithed by women/men – ask any parliamentary draftswoman.) The should be expected to have defects and be myopic. We must have the good faith to revisit them, when persons such as Alfie awaken the international community so strongly.

            Perhaps, Alfie’s efforts may help reconcile the “Elephants” … in the room… with this first grasp…?

  • A. F. says:

    Thank you Prof Wilkinson for your commentary and for the opportunity to respond. This website is an invaluable resource. As someone who has worked in paediatrics and now is studying child and family law this has been, first and foremost, a tragedy and my heart really does go out to little Alfie and his parents. Secondly, it has been a perfect storm for analysis, and I admit my belief in the concept of futility was a little shaken in the last twenty-four hours. Something just seems so wrong about a family appealing to the general public for a bag valve mask while they sit in the PICU of a world-class children’s hospital that their dying toddler is not permitted to leave by court order. The protracted nature of this case has caused me to ask whether something ostensibly right can become wrong when broken down into a series of actions and inactions; questioned and fought against at every stage as Alfie’s family and “army” has done.
    I remind myself of the alternative; most likely “just” a tracheostomy for Alfie, and ultimately I side with the judges and doctors, albeit not entirely comfortably. But how awful for those who genuinely believe that the State has tried to “murder” a child. I wonder what can be done to resolve that huge disconnect, and restore trust.

  • reneer says:

    If anyone wanted to remove their child from a hospital to go to another country, no one in hell should be able to stop them? He’s not even properly diagnosed. FFS, were he my kid, I’d never allow someone else to tell me what I could or could not do with my child. You’d think the stupid brits would be glad to get this entire case off their hands. Just let the baby go to Rome. what do you care? You can’t even diagnose this kid. I bet the U.S. could. Sometimes, I think Britain has the worst medicine in the world. If the parents have a private way to privately pay to bring their child to another country, who in the hell can tell them differently? Does England have this much control over their citizens? Even if there’s no hope, this hospital shouldn’t have any legal rights, if they don’t even have a diagnosis. Lousy medical care.

  • reneer says:

    I honestly think England wants to murder this child. Since they can’t figure out what’s wrong, they wish to wash their hands of the entire thing.

  • MM says:

    Injections of pessimism and distress enter this debate recently. Perhaps, we may seize the opportunity to see that this is not a “tragic” case. The relationships and Life, lived by AE & KJ& TE together in these 23 months, may well be amongst the purest forms of Love experienced by humanity. Surely this is to be celebrated.

    I must thank Dominic and all others for providing and keeping this forum to lucid and civil articulation of the tensions in varying notions of ethics.

  • MM says:

    Do ethics centric structures/mechanisms exist, to facilitate opposing camps of lawyers (on either side of the bench and bar in each case like this) to negotiate and resolve the gap between them?

    May it serve this debate to put more focus on whether unresolved disharmony exists between opposing/competing camps of lawyers, whose human frailties and limitations prevent accurate identification, articulation and decision on while doctors, customers, families and analysts get sucked into the swirl.

  • MM says:

    identification, articulation and decision on, the bottom line while doctors, …..

  • MM says:

    Wishing the best to all

  • SDL says:

    I would like to add few words of comment and few questions.

    The article is written mostly based on supposition
    “Hard to know what the future holds”, “the future, sadly, appears clear”, “There appears to be no prospect of recovery”, “it is still sometimes impossible to make an exact diagnosis”. In case of life and death “appear”, “hard to know”, “sometimes” might be not good enough. All these sentences are very true, and I can believe in what has been written here, but for me, this proofs and makes Evans family point of view reasonable. If chances to keep the child alive are none, more confidence needs to be shown, and words should be attached with responsibility. This is an opinion, can more information be provided, about the sources, some statistics about the subject, an opinion is not equal to a fact.

    – “Sometimes the only hope that remains is that a child’s suffering is not prolonged.”
    Is it the case? Can any evidence be provided that this child is suffering, also can the definition of “child’s suffering” be provided as this term might be very wide. If it is not the case then this part is not relevant and its there only to support a wider theory.

    – “Multiple medical specialists gave evidence in the case.”
    Can some examples be provided? All information that can be found came from Alder Hey, which may be the reason why so many people criticise the case.

    Expectations about the family from doctors and justice.
    All people have instincts, and strongest of them all is instinct to protect kids. There are many cases in which parent decides to sacrifice his life to protect the child. This behavior is natural and healthy and I wouldn’t expect nothing else from Alfie’s parents. Letting go a child is absolutely impossible by human nature and expectations that this case would have different final was naive.

    More harm than good
    The aftermath of the current situation is that questionable “best interest of the child” was put higher than
    – Evans family good,
    – Good opinion about the hospital
    – Safety of hospital employees,
    – Good of NHS,
    – Trust in public medical care
    – Great Britain international opinion

    And all of that in the name of “ethical framework that doctors and the courts use in this country”.

    Human nature can’t be changed, but the framework can.

    Thank you for the high-quality article on the subject.

    • MM says:

      It may be worth pondering the way nature is polarised:
      Some life forms are nocturnal others are diurnal;
      some (like the lion; shark; and even the otherwise veg. hippo!) cannibalise their own babies! others (cow; tiger?) never;
      some sub-species of the same animal (like snakes for example) cannibalise, others snakes never.
      Summer and winter;
      day and night;
      north pole south pole;
      the list goes on…

  • Utilitarian Tedium says:

    The whole history of British moralism is a history of utilitarian idiocy. We know what’s best for you, plebes, so shut up and know your place. Your sense of right and wrong is governed by the principle that you know in advance what is in someone’s best interests and that it’s the place of the experts to dictate this.

    It’s no wonder the whole island is “managing” itself into self-destructive tyranny, which will lead to growing irrelevance and eventual oblivion, all in the name of the Higher Good.

    • MM says:

      Pretty strong point of view.
      Rather that focusing on the seemingly personal defects of this national policy, may it be more helpful to:
      1. view it as a difficult national choice to be made between: having to choose between the two extremes of objective oriented policy vs. subjective oriented policy, and then having to define, most pragmatically, what is objective (relevantly) and what is subjective (relevantly) and for what timeframes? Can this be ever achieved?
      ii. Let’s focus on the positives of the British Kingdom, seriously it is one of the greatest nations and leading light in this World and has contributed and is continuing to contribute so much. For a relatively small country it offers the world disproportionately huge benefits and example of Gold Standard self regulation, let’s celebrate Britain and cooperate to find solutions in the interest of Humanity.
      This is my personal point of view, obviously, and I’m Italian.

    • Kirio Birks says:

      You can know what someone’s best interests are.

      Modern British medicine* has paternalistic and physician-centric roots which have permitted physicians to make medical decisions in a patient’s best interest, according to what the physician thinks appropriate. I admit that we, perhaps, should favour patient autonomy more often. But it certainly shouldn’t be the sovereign principle.

      A patient may have unique epistemic access to their own interests, but it does not mean that they always know what is best for them. Patients stand on the wrong side of time to see the path before them with clear eyes. Physicians may not know quite what the journey of treatment will entail for a patient, but they know the lay of the land. So, while a physician must always consult a patient about their preferences (if possible), having taken those preferences into account a physician is significantly better placed to determine what makes good treatment. Physicians see the same scenarios a thousand times over. So, if a patient values quality of life over quantity of life when battling cancer, a physician can consult their experience of every other patient who had the same desires in the same circumstances and consider how those patients faired.

      Furthermore, we must draw a distinction between welfare and preference interests. Physicians are best placed to determine health maximising treatment, and health maximising treatment is a welfare interest. Patients are better placed to determine wellbeing maximising treatment, and such treatment accords with their preference interests (which doesn’t preclude health maximisation). Where a patient has no preference interests, they have no wellbeing interests beyond health maximisation. AE only has health maximising interests. Physicians know those interests best. Furthermore, as AE has never had meaningful preference interests, no guardian can claim to know them and list them as a competing interest.

      Perhaps, a refusal to do what is in the best medical interests of a child who has no other interests to note, in favour of your own preferences as a parent, is selfish (though, understandable).

      I’d love to hear your thoughts.

      *Caveat: I did not study in the UK and do not know it’s system as well as I would like.

      • Utilitarian Tedium says:

        Horse shit.

        This utilitarian back-patting is tedious and it is getting very old.

        “We” doesn’t matter to anybody. “We” is empty fiction. All that matters is whether or not the child is truly being looked out for. As it is this is all a bureaucratic status game being played by petty technocrats.

        All this garbage about “interests” and “preferences” assume you’re in any position to determine these things and that you’ve got any business dictating it to someone else, whether “you” is the so-called expert or the administrative nightmare that forces itself on people at the point of a gun.

        This is an utterly inhuman way to manage people’s lives, from your little armchair with all your cute a priori decisions and distinctions no less.

        Horse. Shit.

      • MM says:

        You won.

      • Laura Riley says:

        I find your reply alarming. Is this really what physicians believe? That they have the right over life and death of anyone without capacity? You have an a priori statement in there that the next of kin cannot make the decision because it will be based on selfish principles. Or put it another way, the next of kin cannot make the decision because they love the patient. How horrific! Decisions over life and death are to be made by uninterested professionals who are entirely uninvested in the outcome. I think that is a profound mistake. That’s not justice, that’s tyranny. If we are defining best interest without reference to morality or love and ultimately that does mean justice as well, we are entirely lost. What is best for the patient is the most loving outcome and that is best defined by those who love the patient.

        • Lynn Laidlaw says:

          I am sure that those parents who refuse their children a transfusion of blood products or medical treatment due to religious belief love their children. Love is not the issue here.

          • MM says:

            Not so sure as you. Perhaps, could the real question in the reference you cite be: who do they love more their religion or their children?

        • Kirio Birks says:

          “Perhaps, a refusal to do what is in the best medical interests of a child who has no other interests to note, in favour of your own preferences as a parent, is selfish (though, understandable).” – I believe that is the section that you are referring to, no? If not, let me know. In the meantime, I’ll respond as if I have identified the right section.

          Physicians do not have the rights over life and death for anyone without capacity. They have the deciding vote in matters of life and death for anyone without capacity, who has not expressed prior wishes and who has had no prior competing preference interests that can be appealed to by another party.

          What is best for an ordinary patient, in ordinary circumstances, may well be the most “loving” outcome. But that is only true if the patient deems it to be so (by having a preference interest in a loving outcome that supercedes, or coincides with, their welfare interest in health maximisation). Furthermore, it is for the patient to determine what a loving outcome is. The loved determines the worth of that love, not the lover.

          As an ordinary person I certainly hope to be cared for by loving people, I would prefer that to being cared for by people who do not love me (all else being equal). But, that is a preference of mine. My welfare only requires that I am cared for to some minimal standard. Perhaps, being of sufficient mind I have a psychological welfare interest in knowing that someone loves me and cares about me, I am a social animal, but AE is not of any mind to have that knowledge.

          AE only has welfare interests. AE has never had preference interests, so no person can appeal to them and no physician is obligated to regard them.
          Having no preference interests, AE also has no interest in being loved or in a “loving outcome” merely because it is a loving outcome. Therefore, the obligation lies only in doing what is in AE’s best medical interests and physicians are best equipped to determine that. Favouring your own interests, however understandable, is selfish. A single selfish act does not make someone a bad person, but being a good person does not make your selfish action right.

  • S. C. Lewis says:

    I am sorry if Sarah Tonge was intimidated by the responses to her short, concise post.

    Having been forced into the trenches of the vaccine-injury debate decades ago, the idea that AE could be another victim has been a hard one for me to shake. Bias admitted. A simple google search of “Postvaccinal Encephalopathy” should be an enlightening introduction to the issue. Also note that in the first decades of the USA’s National Childhood Vaccine Compensation Program, all compensations were awarded to qualifying children for encephalopathy or death. As far as AF’s condition being neurodegenerative – his parents disagree that it is degenerative and without a diagnosis, claims made otherwise are not solid.

    A huge concern that I have not seen mentioned anywhere is this: Doctors, nurses and other medical staff make mistakes all the time. Many of those mistakes go unnoticed, but some result in injuries that put patients in very compromised and even “hopeless” conditions – “hopeless” and very expensive long-term conditions.

    So shouldn’t we be asking, “What’s to keep a hospital from limiting its financial liability by putting an end of life care plan into place and not allowing the patient to transfer elsewhere?” Doesn’t this put almost total control in the hands of, for lack of a better term, the perpetrator? Isn’t this another fox watching the henhouse kind of thing?

    • Laura Riley says:

      The NHS works a bit differently. AE would have received his vaccines from his GP so not from Alder Hey. I can’t see how Alder Hey would fear liability for that other than for possible negligence for not investigating the possibility. (The mother of AE did say AE became ill shortly after the vaccines). But the NHS simply will not countenance any possibility that vaccines cause autism or this kind of damage. The State hounds out anyone who dares to question the orthodoxy no matter how illustrious the institution is that does the research. The attitude of the State in this is NOT science, it is expediency or utilitarianism. It is for the greater good as they see it although with 1 in 50 now on the autistic spectrum I cannot see how that can possibly be defined as the greater good. So a few brain damaged children are just by the way. I had a few hopes that Trump was going to challenge that orthodoxy, but he seems to have pulled back from it. With my own son I delayed his MMR until he was 2 and his immune system was better developed. To date the State hasn’t attempted to make vaccines compulsory but based on the principles above I can see them trying to do that. The fight for our liberty is on going.

    • Sarah tonge says:

      Thank you honey, I didn’t feel intimidated, I just couldn’t be bothered to read the replies. The vaccine schedule fits perfectly with symptoms presented. Alfie had 6. Alfie was offered help via the Bambino Gesù hospital in Rome. A specialist and research hospital, the best in Europe. Why didn’t they let him go? Contrary to what the mainstream bollocks suggests, he wouldnt have been going for palliative care. AH continued to push for switch off, time and time again. Week last Thurs, BG sent a med team, equipment, and a jet was waiting at John Lennon Airport Liverpool. AH telephoned the police who blocked all exits, and then threatened Tom, should he remove HIS Son, he would be arrested. Nice! That behaviour from our police masquerading as clowns, cost him his life. AH planned to switch Alfie’s machine off and administer 2 highly toxic opioid. They didn’t, not sure whether Pzier kicked off as one was off licence. Anyway, they eventual did switch off that night, and withheld oxygen for over 14hrs, totally against their own guidelines and NICE. Hydration and fluids a lot longer. That behaviour would have played a massive part in Alfie’s survival. The rest is history. Or should I say their history. Everything has gone quiet. X

  • Sarah tonge says:

    May I just add as well, in reponse to S.C Lewis. The reason I didn’t want to view comments in response to my short, concise, is because as much as I respect ‘status’ in the Oxford community, quite often the ‘ego’ takes precedent, and it unsettles my soul. If only we could all just be on the same page for just once, for humanity, in a situation like this anyway, and ditch ‘getting one over’ we’d climb mountains together. It doesn’t matter where we are educated, wiseness, doesn’t come from four walls, it’s deep within the soul. Unfortunately, too many people in suits that have originated out of your very prestigious university are absolutely scared ‘shitless’ of going it alone, and truly speaking their mind, whereas I am not. I don’t fear anybody. Not the Police. The Government. The Pharmaceuticals. The Judiciary. I have NEVER, committed a crime in my life, and do not intend to start, but I will not, turn a blind eye to this corruption and quite frankly heinous and beyond sick behaviour. Amazing isn’t it, 2018, you’d think we would have evolved to one of personal strength and true conviction, natural selection and all that, but we haven’t. In actual fact, we’re de-evolving, into a spineless group of ‘do as you are tolds,’ speak when spoken to, and most definitely do not cross that line and speak out of tune against ones peers. Sad, but true. Don’t believe me, just gander at the MSM, the mouth of reason allegedly, that the masses drool over, over their hot deflated muffin. Pure unadulterated propaganda… at its best. I’d love to be a fly on the wall when the columnists show their beauties for publication and all gets rejected because it’s too factual and close to the truth. D’you think they throw their resignations across the board room table? Well of course not. Spineless chickens without morality or ethics, thinking only of their ego, bank balance, and holidays in Bali whilst watching the cock fighting and drinking schnapps, believing they’re somewhere else. If they can’t tell the truth, the media, well what’s the point, we may as well give up. The masses rely on them for their educational and enlightened lifts, I know, insane isn’t it, but that’s the way the system is set up unfortunately. Indoctrination thus conformity, age old age old. And here we are, Alfie Evans lost his life because of it! ❤️

  • Sarah tonge says:

    Follow up:
    I have shared with you numerous videos, still showing as awaiting moderation. One video, the Med staff from Italy waiting to take Alfie, with Tom having lawful advise to remove his Son. The Med staff having all relevant equipment ie ventilator. The video shows the police on the ward after AH hosp called them and as result they blocked all exits and warned Tom of arrest should he remove his Son. Another video showing Alfie on the day of the switch off, alert and looking at his Father. And another, that same day, with Tom describing Alfie’s fingers turning blue as a result of AL staff refusing to allow Alfie oxygen. Then we have pics, one of Alfie in a sodden wet baby grow. A mouldy feeding tube. Two AL med forms showing incorrect dosaging. Please… advise. What’s going on? This is an ethics committee site, is it not? X

    • Laura Riley says:

      Can you publish your videos somewhere else? Because if this is true it is truly shocking and the world needs to know about it.

    • admin says:

      In response to the question regarding our moderation policy, please note that all posts with links are automatically moderated, and as a policy we do not publish links to videos. We also reserve the right to additionally moderate any comments such as those that are offensive, libellous or off-topic.

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