Knowing When to Let Go

Alfie Evans’ case is another of those tragedies where grieving parents just won’t accept the inevitable.

The parents of Alfie Evans say they have air ambulances waiting to go as they continue to fight to move him to a hospital in Rome.

Tom Evans, 21, and Kate James, 20, have been fighting a legal battle to move their 23-month-old son, who suffers from a degenerative neurological condition, to the Italian capital for treatment.

As they lost the latest round of their legal fight today, Mr Evans wrote on Facebook that have ‘three air ambulance companies who would take Alfie’.

He added: ‘Now we have Milan, Genoa, Rome and Munich all offering help for Alfie’.

The child’s brain is turning to mush. He is being kept alive artificially and the doctors want to let him go, yet the parents won’t. Where they get the money for these court cases is somewhat puzzling, because I couldn’t have done this in their circumstances. Not that I would  anyway as I have different beliefs – the child is gone and all that remains is a body – an empty shell.

They persist with this notion that something can be done and those places that are offering to help are merely offering false hope. Also his father is clinging to this idea that he hasn’t been diagnosed. Well, no, maybe they don’t know why this has happened, what they brain scans do tell them is that there’s nothing much there. So, yeah, he looks fine on the outside. That does not mean that he is going to get better. Time, therefore, to stop wasting money and let the poor little mite go, then grieve properly.

The other disturbing fact – as with similar cases is the hangers-on who gather outside the hospital, demonising the medical staff. These people are parasites feeding on the tragedy of others. Pretty despicable stuff, frankly.

34 Comments

  1. I was always swore that if, back when our kids were babes, we were placed in that sort of horrific situation I would, maybe for once, be a ‘real’ and good father and pull the plug myself. That’s a duty placed on all parents but particularly fathers. If there is no way out then you make sure your child suffers not a moment more.

    As to where this couple get the money to ‘fight bravely’ one assumes they have sold the rights to a ‘news’paper,which live on these kind of things and which is why I refuse to read the ‘reporting’ on such things.

  2. Please be kind enough not to speak too ill of the parents of a dying child, as those parents are insane, and will be for some time after the death.

  3. I rather agree concerning the outlook for the unfortunate child. I can quite understand a hospital deciding ” We have done all we can” and wanting to discontinue treatment. What I do not understand is why they should try to block the parents from seeking a second opinion outside the UK.
    The case of Ashya King was somewhat similar. The parents believed there was a more effective treatment available in Prague and had the means to pay for it by selling a property in Spain.

    They left the Southampton hospital with their child to do this and were hunted across Europe with a European Arrest Warrant issued in the UK. Eventually they were caught and separated from their child whilst being held under arrest for several weeks. Eventually they were released and able to,get the treatment they wanted. It has since been reported that the boy has made a good recovery.
    Yet the British hospital’s action was to criminalise the parents for daring to take the lad for treatment which it could not provide. There is something distinctly odd about these cases, It reminded me of the “crime” of Republikflucht in Communist East Germany where leaving the workers’ paradise without permission was severely punished.

    • “I rather agree concerning the outlook for the unfortunate child. I can quite understand a hospital deciding ” We have done all we can” and wanting to discontinue treatment. What I do not understand is why they should try to block the parents from seeking a second opinion outside the UK.”

      THIS! Times 10000.

      • They can without moving the child anywhere. The doctors in Rome can look at the scans.

        I also recall that during one of the other similar cases, a doctor travelled from the USA to examine the patient. That would make more sense than sending the patient to Rome. However, these parents are deluding themselves that this is a treatable condition, clinging to the “undiagnosed” issue. Yes, sure, its cause is undiagnosed. The outcome – brain death – has already happened.

    • The case of Ashya King was somewhat similar

      Not really ,on my limited understanding of the medical facts. It is reported that most of poor Alfie’s brain is destroyed and there is no coming back from that . Of course the Kings should never have been hounded with arrest warrants and press vilification.

    • What I do not understand is why they should try to block the parents from seeking a second opinion outside the UK.

      Because it is not in the best interests of the patient and they are obliged to act in those best interests.

      Sure, they don’t always get it right – as you mention in the Ashya King case (and if you search my archives, I was scathing about the medical and legal professions in that one). However, in that case, treatment had the real possibility of improvement. Here it does not, so the best course of action is to let him die in comfort and peace. The parents are acting in their interests, not those of the child.

      • Logical fallacy. Because one British medical institute decides that the results say something, it must therefore be true? As our NHS is on its arse, there could be a suggestion that euthanasia is the cheaper option. The best interests of the patient are to survive and get better, not to die. That’s the fundamental of the paths.

        If a parent wishes to seek a second opinion through their own funding then this is how the NHS should work, yet here we have an example of the state interfering in people’s lives (and deaths). The NHS is a service provider to the public and should return to bring that and no more. The moment it decided how to control people’s access to medical advice and services is the moment it lost its way. The NHS is now little more than a veterinarian practise that decides when a dog hit by a car needs to be put down.

        • No logical fallacy here – at least not from me. You’ve constructed a nice little strawman, though.

          No one has preclued a second opinion. There is nothing preventing an Italian doctor travelling to the UK and looking at the notes and scans and examining the child.

          The best interests of the patient are to survive and get better, not to die. That’s the fundamental of the paths.

          So what part of “almost all of the brain has been destroyed” are you not getting here? What part of “terminal condition” do you not understand? The patient is not going to get better.

          As for your comment about putting him down – that’s just emotive drivel. Letting someone die with a bit of dignity is not putting them down. And you have the cheek to accuse me of logical fallacy. I suggest you put your own house in order there.

          • What part of “almost all of the brain has been destroyed” do you take to be accurate or just opinion? The same opinion that gave such an accurate and prompt diagnosis for your wife and then sent her home?

            The reasoning behind moving the child is that they want better medical facilities and experts than the NHS provide. Your logical fallacy comes from the fact that you assume the NHS doctors and equipment in the UK have the ultimate answer or are the best, yet then explain how the NHS has some of the lowest patient outcomes in western society (without quoting source, may it be mentioned).

            The other constraints that appear here are from the NHS itself, and the red tape that ties up every decision they have to make. I’m not sure why you seem to think that they have a right to decide who lives or dies, they simply provide advice and the patient makes decisions on whether they want to take that course of action. There is no cost to the NHS involved in this course of action, simply a stamp on a piece of paper.

          • Kindly leave my wife out of this.

            If you read the reports – they are all saying the same thing, as are the courts; that the scans show that the brain has almost been destroyed. Unless the evidence placed before the courts is mere opinion? The various judgements are readily available to read. If you could be bothered to read any of it, you will realise that the second opinion that the parents sought concurs with the first one.

            Your logical fallacy comes from the fact that you assume the NHS doctors and equipment in the UK have the ultimate answer or are the best, yet then explain how the NHS has some of the lowest patient outcomes in western society (without quoting source, may it be mentioned).

            If that strawman gets any bigger they will be reporting sightings from the international space station.

            I’m not sure why you seem to think that they have a right to decide who lives or dies,

            Another strawman. I said nothing of the sort. This child is all but dead. If he wasn’t on artificial life support, he would be long dead by now. If you read the judgement, the courts recognise that the care he needs precludes moving him. Letting him die is the kindest thing to do.

  4. They are temporarily insane. Hoping for something to change.
    They see that there have been previous cases, the Kings, where thing improved and want to try that.
    Our incompetent NHS resist anyone daring to defy they in the most callous way. These and the Kings are examples.

    They should be allowed to get a second opinion.
    They should be allowed to remove the child to another jurisdiction provided that we don’t pay for it without good reason. Bringing doctors to UK to check and provide a second opinion should be a good first step.

    We need to replace these primadonnas that insist our system is 100% right. They should be sued when it goes wrong as normal disciplinary actions do nothing.

    • They have had a second opinion. No one has stopped them having one. It concurs with the first one. Professor Nikolaus Haas was perfectly clear in his assessment – the child’s condition is terminal. This concurs with that of the medical team at Alder Hey.

      The resistance to moving him is partly to do with it being a waste of time and effort, but also that the care and equipment he needs is at Alder Hey, so moving him is likely to do more harm than good.

      The law is used in our system to intervene when parents cease to act in the best interests of the child. So, on this occasion, I side with the medical profession.

        • Okay, I’ve had this conversation with you before. You might think that snarkument is a jolly fine thing and enjoy your absurd logical fallacies. I find them tiresome. You do not argue in good faith and persist in idiotic and off-topic one-liners. Now, piss off or I’ll make you piss off. Choice is yours.

          • I’m asking a genuine question, as I’m not sure if they’re the same thing but one is physical evidence based and the other based on thesis? You seem to be full of opinions, but never clarify anything?

            Is it possible that the experience you had previously with the NHS might also be at play here and that mistakes can be made in opinions of doctors or ‘experts’?

          • The scans are the evidence. They are pretty conclusive. The second opinion merely confirmed, having seen the patient and the scans the same as the first one.

            The thalami, which regulate the pathways of the brain, have entirely disappeared. This, I remind myself, controls the stimuli to the most basic sensory
            functions. Alfie has lost the capacity to hear, see, smell or respond to touch, other
            than reflexively. At the conclusion of his evidence F produced a considerable
            number of video clips. The overwhelming majority of these demonstrated the accuracy of the medical view in that they illustrate reactive responses which were frequently intentionally generated by F.

            My own personal experience has nothing to do with it and please leave it out.

            You seem to be full of opinions, but never clarify anything?

            No. You go off on tangents that I never originally discussed nor have any interests in pursuing.

      • The judge suggested that Professor Nikolaus Haas, who is also based in Munich, had used the case as a “platform” for his own beliefs.

        He highlighted a paragraph in Professor Haas’s report, which read: “Because of our history in Germany, we’ve learned that there are some things you just don’t do with severely handicapped children.

        Read more at https://www.shropshirestar.com/news/uk-news/2018/03/06/munich-based-doctor-failed-alfie-and-his-parents–judge/#BI5YcKSTHbd4dRtz.99

        • This is what is known as poisoning the well. The issue here is is the NHS preventing a second opinion? No, they are not. That’s it. Whatever Haas may have said that the judge didn’t like is irrelevant.

          • The issue here is not what you decide that it is. You have tried to dismiss my point by arguing against the character of the person providing the second opinion. Irrelevant, as the matter has been addressed – the quality of the person giving that opinion is neither here nor there. I replied to the matter of their rights to a second opinion and yet you still persist in trying to twist the argument to your own liking. I answered your question – that is an end to the matter.

          • Your opinion on the right of a parent to take their child out and wherever they wish is clearly stated back in 2014 https://www.longrider.co.uk/blog/2014/08/30/the-state

            Your position seems to have changed based on medical evidence available? Therefore the parents don’t have the ultimate right to chose should the state assert a higher right based on evidence they have at the time…so the right of a parent then becomes subjective?

          • I have made no comment about their rights. I have sided with the opinion of the medical profession and the courts based upon the available evidence. If you cannot assess a situation on a case-by-case basis because you think in two dimensions, then that’s fine. Don’t assume the same of others. Now, I’m tired of what is rapidly becoming trolling.

  5. Not saying it is the case this time, but I have noticed that some doctors simply cannot stand to have their opinions questioned, they would sooner switch the kid off rather than there be a chance, however slight, that someone else could improve things. That case of the parents taking the kid to Poland being one to point at!

    • I’m not aware of that being the case here, though. Too many opinions looking at the scans and coming to the same conclusion. He cannot function at all without the machines and his brain function has gone. As for improvement no matter how slight – quality of life is an important factor. Life as a vegetable is no life at all. Letting him die is the kindest thing for all involved. It’s just a shame that the parents cannot let go.

  6. I rather sympathise for the parents, but they would seem to be grasping at straws in order not to face up to grim reality. The child has some form of mutation and is a goner.

    By way of analogy, consider a car with an engine which for a while has been smoking, throwing out oil and coolant and getting progressively worse over time and which has now ceased to run. For this car the diagnosis is one of “Broken engine”; you do not know precisely what is broken, merely that it is broken and cannot be repaired.

    The situation is the same with the child. Something has gone wrong and his brain has slowly died. Higher functions went first, then progressively he has lost even the ability to breathe by himself. His heart is functioning because hearts mostly run themselves; guts function independently of brains, too.

    The poor little kid isn’t going to recover from this. Mechanical ventilation of his lungs and a tube in to his stomach are all that are preserving his life. He likely isn’t in any pain, because there isn’t the brain function there to perceive pain. He can be kept alive for quite a long time like this, but to what end? He will not recover, he will never be a person, he merely marks time until some drug-resistant bacterium comes along and ends him.

  7. Having lost a baby twenty two years ago I can tell you this. The pain never really goes away, not like with other bereavements, you just get used to the feeling. I don’t blame the parents for wanting to keep their kid alive, it’s a visceral thing, it’s instinctive.

    I truly feel for the parents, it really is a nightmare for them. So no, I can’t really condemn them. Even so the poor little buggers chance of recovery is remote, they are like drowning men clutching at straws.

    Don’t be too harsh on them.

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