Religion and Ethics Forum
General Category => General Discussion => Topic started by: Bubbles on April 12, 2017, 12:23:28 AM
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What a terrible decision to have to make, against the wishes of the parents.
http://www.bbc.co.uk/news/uk-england-london-39568388
As they had raised millions to take him to the USA would it be such a big problem to just give it a go?
It would be very hard to turn off the life support while the parents regarded you as a murderer.
I suppose there might be a time to let a baby slip away rather than suffer.
, but what a heartbreaking decision to have to make.
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It is heartbreaking Rose, I feel for the parents and that poor little baby. Still I believe the doctors have the best interests of the child at heart &even the American doctors now agree with them,previously that were not so aware of the gravity of his condition. Travelling to the USA for treatment would be gruelling for him, parents thought he might have a chance but looks as though they were clutching at straws.
He may pass away peacefully here now if life support is withdrawn & I do hope his parents will come to terms with it in time. it's so hard for them, and for the hospital staff.
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Let us say the poor child did go to America and they did manage to stabilise it in someway so that the child would not actually get worse or not die... big if.
Presumable the child would then continue it's existence in a semi vegetative state (irreparable brain damage having all ready been done). Who would look after and support the child? What would be it's quality of life? What would be it's parents quality of life and who would support them?
Very sad though it is I think it is much better to let it go.
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I agree with John.
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This is wrong. He (not "it") is his parents baby, they want to try to keep him alive, and the money that has been raised for this cause should be spent as it was intended.
Great Ormond Street has gone down in my estimation.
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This is wrong. He (not "it") is his parents baby, they want to try to keep him alive, and the money that has been raised for this cause should be spent as it was intended.
Great Ormond Street has gone down in my estimation.
The judge stated (what I have always believed to be the case) that parents do not own their children and they must act in the best interest of their children. I have no idea what kind of promise the parents received about the treatment available from the American interest - I have seen it referred to as "pioneering". That does not look promising, it suggests that it has never been done before and that no-one knows the likely outcome. The baby may be subjected to invasive procedures and then die - an experimental subject who supports the null hypothesis.
The judge said “I dare say that medical science may benefit objectively from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him."
Charlie's prospects are bleak. Is it not better that he leaves his short life in relative comfort and peace? And what has the Great Ormond Street Hospital done that is so bad?
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A good post HH and I agree with what you say. Very glad I don't have to make the decision as i am sure are most of us but someone has to. The poor little lad deserves to rest.
His parents will need much TLC when it's over.
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I agree so much with HH.
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What a rotten decision to have to make, I would have to go with the judge.
ippy
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Agree with Ippy, what a horrible decision to have to make. There isn't a right answer here, only a choice between two tragedies. Incredibly sad for the parents but I think in terms of Charlie, it's the the least worst option.
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Agree with Ippy, what a horrible decision to have to make. There isn't a right answer here, only a choice between two tragedies. Incredibly sad for the parents but I think in terms of Charlie, it's the the least worst option.
That's about it N S; a modern saying but apt, 'shit happens', I don't particularly like this saying but in this case it fits.
ippy
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The judge stated (what I have always believed to be the case) that parents do not own their children and they must act in the best interest of their children. I have no idea what kind of promise the parents received about the treatment available from the American interest - I have seen it referred to as "pioneering". That does not look promising, it suggests that it has never been done before and that no-one knows the likely outcome. The baby may be subjected to invasive procedures and then die - an experimental subject who supports the null hypothesis.
The judge said “I dare say that medical science may benefit objectively from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him."
Charlie's prospects are bleak. Is it not better that he leaves his short life in relative comfort and peace? And what has the Great Ormond Street Hospital done that is so bad?
His parents think that it is better that he is alive, than he is dead.
I agree with his parents.
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His parents think that it is better that he is alive, than he is dead.
I agree with his parents.
So you want him to suffer to indulge your emotion.
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His parents want him, alive, not dead. So you want him to suffer to indulge your emotion.
That is bollocks.
His parents want him alive, rather than dead. I agree with his parents.
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His parents want him, alive, not dead.
That is bollocks.
His parents want him alive, rather than dead. I agree with his parents.
And he will suffer because of your indulgence in your emotions.
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His parents think that it is better that he is alive, than he is dead.
I agree with his parents.
With the best will in the world, it is impossible to understand why the parents would have a better understanding of the prognosis than the medical professionals involved.
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And he will suffer because of your indulgence in your emotions.
No he won't because the judge will rule against it.
HH you never know, even without going to America he may live and feel well for a while longer. That is something to hope for.
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With the best will in the world, it is impossible to understand why the parents would have a better understanding of the prognosis than the medical professionals involved.
This isn't about reason though, is it? This is two parents who feel ferociously protective of their child. From what I can gather from talking to parents with disabled kids the protectiveness goes way beyond that which most parents experience.
And then there is the perfectly understandable fear about what happens once they let him go.
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This isn't about reason though, is it? This is two parents who feel ferociously protective of their child. From what I can gather from talking to parents with disabled kids the protectiveness goes way beyond that which most parents experience.
I agree, but that surely calls into question their ability to think clearly about what is best for their child and what is the best use of the £1.25 million they seem to have raised.
The article says the boy has "irreversible brain damage". Now I haven't done any further research to find out what that means in this case, but it could be anything from minor learning difficulties to total destruction of higher brain functions. If it's towards the latter end of the scale, then I'm afraid he is already gone and no amount of being desperate to keep him alive is going to make any difference.
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No he won't because the judge will rule against it.
HH you never know, even without going to America he may live and feel well for a while longer. That is something to hope for.
Yes, he will by Humph's position. The treatment is not about recovery but prolongation of suffering that has no proof.
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I agree, but that surely calls into question their ability to think clearly about what is best for their child and what is the best use of the £1.25 million they seem to have raised.
Yes, it explains their actions, but it doesn't make them right.
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With the best will in the world, it is impossible to understand why the parents would have a better understanding of the prognosis than the medical professionals involved.
Just now and again the experts get it wrong, people do better than they predict especially the young. I think those parents just want to try. It's natural to want to protect your baby.
If I was in the medical profession I wouldn't want to be the one pulling the plug. I understand where Humph Warden Bennett is coming from. The parents aren't ready to let go, they need some sort of counselling to deal with the whole thing.
I don't want the baby to suffer either, but nothing is going to happen for 3 weeks anyway because they have time to appeal. Why not fly the baby out to the states in the meantime just to see if it works?
https://www.theguardian.com/society/2017/apr/12/parents-fighting-keep-sick-baby-alive-charlie-gard-appeal
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Just now and again the experts get it wrong, people do better than they predict especially the young. I think those parents just want to try. It's natural to want to protect your baby.
If I was in the medical profession I wouldn't want to be the one pulling the plug. I understand where Humph Warden Bennett is coming from. The parents aren't ready to let go, they need some sort of counselling to deal with the whole thing.
I don't want the baby to suffer either, but nothing is going to happen for 3 weeks anyway because they have time to appeal. Why not fly the baby out to the states in the meantime just to see if it works?
https://www.theguardian.com/society/2017/apr/12/parents-fighting-keep-sick-baby-alive-charlie-gard-appeal
So, you know the baby isn't suffering despite not being an expert? You think the extra treatment isn't going to be adding to the suffering?
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Just now and again the experts get it wrong, people do better than they predict especially the young. I think those parents just want to try. It's natural to want to protect your baby.
If I was in the medical profession I wouldn't want to be the one pulling the plug. I understand where Humph Warden Bennett is coming from. The parents aren't ready to let go, they need some sort of counselling to deal with the whole thing.
I don't want the baby to suffer either, but nothing is going to happen for 3 weeks anyway because they have time to appeal. Why not fly the baby out to the states in the meantime just to see if it works?
https://www.theguardian.com/society/2017/apr/12/parents-fighting-keep-sick-baby-alive-charlie-gard-appeal
Because flying could cause further suffering, no matter how careful his care. And that is without the possibility of the unproven treatment making him suffer too.
All we see are pictures of an apparently peaceful sleeping baby. We've no idea of the reality of that baby's life.
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Reading further it's very sad, in the USA he would have got the treatment, but even the doctor offering to treat him with the pioneering treatment thinks it won't make a difference.
http://www.telegraph.co.uk/news/2017/04/11/high-court-rules-doctors-can-withdraw-life-support-treatment/
Quote.
"It was even the opinion of the US expert who Charlie's parents hoped would treat him that it was was "very unlikely that he will improve" if he underwent the pioneering therapy being offered.
A US doctor said in evidence submitted to the Family Division of the High Court that he would be happy to treat Charlie with experimental nucleoside therapy and that the baby would have received the treatment if he lived in the US.
But the doctor also added: “I can understand the opinions that he is so severely affected by encelopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.”
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His parents want him, alive, not dead.
That is bollocks.
His parents want him alive, rather than dead. I agree with his parents.
But the key issue isn't whether his parents want him alive or not, but that is in the best interests of the child. In most cases the parents' view is taken as, by default, in the child's best interests, but not always. In those cases it is for the courts to decide what is in the childs best interests. In this case they saw the treatment as being futile and that the travel and the treatment itself would cause unnecessary distress to the child, for no gain. I think the courts are correct as there is a vanishingly small likelihood of any benefit from the treatment (even the doctors in the US agree) and without doubt the travel etc will cause distress.
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Because flying could cause further suffering, no matter how careful his care. And that is without the possibility of the unproven treatment making him suffer too.
All we see are pictures of an apparently peaceful sleeping baby. We've no idea of the reality of that baby's life.
Not only that.
In the very unlikely event that any treatment manages to stabilise the child's condition - though if there is severe brain damage no known treatment can reverse it - what happens if, on the child's return to these shores, there is no intensive care facility available at GOSH du to another child having an emergency?
Where does that leave the child - and the parents?
Financing life support in the States could easily use up all the funds raised.
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A very sad story, it must be awful for the poor parents. :( However, I feel it is right to withdraw life support in this case.
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This sad situation is still going on.
Charlie Gard: Mum shares photo of son with eyes open
http://www.bbc.co.uk/news/uk-england-london-40246370
Couldn't the doctors have tried an alternative treatment in all this time? We are now a couple of months down the line, and money was raised for his treatment.
What was the sense in denying him the chance using money donated in his name? When here we are 2 months later on, and nothing has been done one way or another.
:o
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I still think it kinder to the child to withdraw treatment and let nature take its course as I said before.
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http://www.bbc.co.uk/news/uk-england-london-40479074
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http://www.bbc.co.uk/news/uk-england-london-40479074
Populists and papulists being populist.
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I think in the US, parental rights supersede children's rights, but not here under human rights' laws. But there are tons of American comments saying how the NHS are murdering a child, whereas good old US private health would save him. Sure.
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The money's there for him to be treated. The doctors that could do so say there's no point.
It's becoming a circus now. :(
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Yes, with Trump as Barnum. So sick.
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Mebbe Trump and Frankie could do a joint laying on of hands. I mean Charlie is small but Trump's hand are tiny and he likes tbe whole touching things together thing.
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That poor child should be permitted to die in peace.
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That poor child should be permitted to die in peace.
Absolutely.
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Have to agree.
I have to admit that I lose sympathy with those so far removed from the reality of the situation, even with parents and a child, that the inevitable is denied as the inevitable.
The little lad got a shit deal on the pointy end of random chance - we know what love is, you don't have to tell us - don't prolong the agony and make a terrible situation worse: make your peace, say your goodbyes and do the right and long overdue thing.
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I'm not judging the parents here, god knows, but I think hanging on is as much about their own fear of loss and what happens after. I feel for all three of them.
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I'm not judging the parents here, god knows, but I think hanging on is as much about their own fear of loss and what happens after. I feel for all three of them.
That I think is where my sympathy starts to erode - it becomes all about their terror of loss over the best 'deal' (so to speak) for the child.
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Have to agree.
I have to admit that I lose sympathy with those so far removed from the reality of the situation, even with parents and a child, that the inevitable is denied as the inevitable.
The little lad got a shit deal on the pointy end of random chance - we know what love is, you don't have to tell us - don't prolong the agony and make a terrible situation worse: make your peace, say your goodbyes and do the right and long overdue thing.
much as I agree with your position, not sure that saying the parents are so far removed from the situation makes emotional or logical sense. Indeed surely it is their not being removed from the situation that is part of the problem?
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That I think is where my sympathy starts to erode - it becomes all about their terror of loss over the best 'deal' (so to speak) for the child.
And people in terror don't think rationally. I agree with NS, they can't be blamed. The state needs to be allowed to do what is right though.
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much as I agree with your position, not sure that saying the parents are so far removed from the situation makes emotional or logical sense. Indeed surely it is their not being removed from the situation that is part of the problem?
It is hard not to have sympathy for the parents - indeed I've no idea how I would react in a similar situation. It is understandable how they might clutch at any and every straw that they somehow have persuaded themselves will help their baby.
But that doesn't change the facts - which are that medical opinion on both sides of the Atlantic agree that there is nothing further that can help the baby, so any addition treatment would be futile and likely to cause unnecessary distress. Even those proposing the experimental treatment in the states are clear firstly that it will not provide a cure and secondly that there is no evidence of it helping in a similar situation. Further that several courts have considered the case and are in agreement that further treatment cannot be in the baby's best interests and should not, therefore, be permitted.
Where I have a problem is the media circus and voices from people who should know better effectively acting as cheerleading for futile treatment. In doing so they are not helping the parents to come to terms with the awful situation and its inevitable conclusion. They aren't helping anyone.
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It is indeed terrible for the parents, and I am sure none of us would want to face that situation. Doing what is right for the child is what is important; in this instance it is switching off the life support machine.
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It is indeed terrible for the parents, and I am sure none of us would want to face that situation. Doing what is right for the child is what is important; in this instance it is switching off the life support machine.
I agree - but it also means working with the parents to get them to accept the reality of the situation thereby allowing them to grieve - rather than to be tied up in anger, resentment and denial. That isn't helpful.
Sadly the 'noises off', whether from Trump or the Pope merely stoke up the fires of anger, resentment and denial and are deeply unhelpful.
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I agree - but it also means working with the parents to get them to accept the reality of the situation thereby allowing them to grieve - rather than to be tied up in anger, resentment and denial. That isn't helpful.
Sadly the 'noises off', whether from Trump or the Pope merely stoke up the fires of anger, resentment and denial and are deeply unhelpful.
Trump and the Pope should definitely keep out of it.
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http://www.bbc.co.uk/news/uk-england-london-40503842
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Seems the clinicians are having a re-think - let us hope this is good news for the wee fella.
http://www.bbc.co.uk/news/uk-england-london-40535043
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Just as long it isn't prolonging his life for no purpose.
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Feeling less and less happy about how this is being conducted.
http://www.bbc.co.uk/news/uk-england-london-40552026
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I don't think this treatment is going to make any significant improvement to this child's life, as he is so severely disabled. I think it far kinder to let nature take its course.
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I'm no doctor so I can't judge. It's the ill-informed circus around it that I don't like.
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I'm no doctor so I can't judge. It's the ill-informed circus around it that I don't like.
I agree. My concern is that the child goes to the US for this experimental treatment, which might work to some degree, but will still leave him very disabled, but possibly more aware of the fact as he gets older. Unless the treatment can deliver him a near normal life if it works I don't see the point in putting the child though it.
Obviously I am not a medic with all the facts, but having some knowledge of brain damage and its effects this is why I am so concerned.
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I think this is a good piece
http://blog.practicalethics.ox.ac.uk/2017/07/the-sad-case-of-charlie-gard-and-the-rights-and-wrongs-of-experimental-treatment/
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Accompanied by some startling comments.
I think what I'm struggling with is the fact that his parents aren't accepting that keeping him alive hurts *now*. They say that if the new treatment causes him pain they will stop it but they aren't accepting that he can't communicate his pain because of paralysis and *every day* he is in pain. Instead they tweet pictures of an apparently contented baby without explaining or accepting the fact that he looks content because he can't move. I understand their wish for him to be ok but not their refusal to engage with the doctors and experts who really know how things are. And horribly I'm finding myself not liking them much, and I don't like myself for that either.
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That's what I was trying to say in #38 - and would have if I'd spent more time on it.
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Accompanied by some startling comments.
I think what I'm struggling with is the fact that his parents aren't accepting that keeping him alive hurts *now*. They say that if the new treatment causes him pain they will stop it but they aren't accepting that he can't communicate his pain because of paralysis and *every day* he is in pain. Instead they tweet pictures of an apparently contented baby without explaining or accepting the fact that he looks content because he can't move. I understand their wish for him to be ok but not their refusal to engage with the doctors and experts who really know how things are. And horribly I'm finding myself not liking them much, and I don't like myself for that either.
Yes, I saw the mother say that parents know best, which is obviously not true, and the media circus really is off-putting. There is an American pastor who prances around outside the court, who is really obnoxious. I suppose the right to life people have taken it up, and the right wing, who are saying that the NHS are a Nazi death cult. Well, for sure private health insurance takes care of all sick kids in the US.
Been chatting with various US people online, and they often think that the NHS means government oppression of individuals, and I keep saying that actually Charlie's rights are being upheld by various courts, so the vulnerable child is protected by these structures.
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I should think working at GOSH is grim right now. Death threats and hate mail aplenty.
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I should think working at GOSH is grim right now. Death threats and hate mail aplenty.
Well, the right wing start to distort it completely. Here is a piece from Fox news which is wrong on about 4 counts. 'Big government', for one thing, since the government does not decide who receives treatment, and the judiciary are independent. In fact, it's Charlie's rights that are being protected, but they don't see that.
The anti-abortion people are getting in on the act, and they tend to be pretty nasty.
http://www.foxnews.com/opinion/2017/07/10/charlie-gard-why-his-struggle-may-soon-be-ours.html
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Yes, it's frightening. And of course it is being used to advocate for policies that will lead to the unnecessary deaths of many more babies and children. The US doesn't exactly have a good record on infant mortality.
As an aside, my grandmother died as a protest happened outside the hospital when my family (and many others) needed peace and space - people protesting outside the hospital need to remember that there are children and families using GOSH who deserve to find calm and safety there.
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I think there are plenty of cases like Charlie's but usually, the parents accept medical opinion. I'm not sure why this case has aroused such a clamour, partly I suppose, because the right wing can use it to attack 'socialized medicine', big government, and so on. Far better that hundreds of children die because they can't get private insurance, or the money runs out.
It's ironic really that Charlie's parents haven't paid a penny, as far as I can see; still, what counts are parental rights, not children's.
On the other hand, the Tories are keeping quiet and not lining up with the right to life people.
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It is what is best for the child, not campaigners!
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Or parents.
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I think there are plenty of cases like Charlie's but usually, the parents accept medical opinion. I'm not sure why this case has aroused such a clamour, partly I suppose, because the right wing can use it to attack 'socialized medicine', big government, and so on. Far better that hundreds of children die because they can't get private insurance, or the money runs out.
It's ironic really that Charlie's parents haven't paid a penny, as far as I can see; still, what counts are parental rights, not children's.
On the other hand, the Tories are keeping quiet and not lining up with the right to life people.
I think cases like this happen all the time. In this case the parents have been able to use social media and crowd funding to further this claims in a way that wouldn't have been possible on the past.
I'm no expert on how the US system works but clearly the Gard family aren't wealthy. I wonder if they were American whether they would have been able to access the kind of healthcare that GOSH have offered Charlie.
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I think cases like this happen all the time. In this case the parents have been able to use social media and crowd funding to further this claims in a way that wouldn't have been possible on the past.
I'm no expert on how the US system works but clearly the Gard family aren't wealthy. I wonder if they were American whether they would have been able to access the kind of healthcare that GOSH have offered Charlie.
I think plenty of kids in the US die without insurance, or the money runs out, or the insurance company says you're not eligible. Charlie has been cared for for months, with no payment from his parents. That is shared risk.
So the right wing have to lie about this.
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I am so glad I don't live in the US! Britain isn't perfect by any means, but I wouldn't live anywhere else.
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http://www.foxnews.com/opinion/2017/07/10/charlie-gard-why-his-struggle-may-soon-be-ours.html
Terrifying.
Although there is a veneer of 'reasonableness' about the interview it is chilling that never once do they talk about what is in the best interests of the child - it is all about absolute rights of the parents. In fact the only mention of 'best interests' is saying that giving treatment might not be in the best interests of the funder.
Astonishing too, from the USA that they seem to be saying that you cannot put a dollar value on a lie, but that is exactly what happens in an insurance based system - you live or die on the basis of how much you can pay.
I was also astonished by the comment about 'who controls the controllers' - this from people who want absolute rights for parents to make decisions regardless of whether it is in the best interests of the child, with no check or balances. The whole reason why we are having this debate is precisely because we have checks and balances (people who control the controllers) - where there is a difference of opinion on best interests, we don't simply take the side of the parents (nor of the medics) we allow the legal process to consider the relative claims and to come to a judgement. And we allow several layers of appeal.
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It will give the parent's a sense of closure, knowing that everything that could be done, was done.
The parent's have to try and do everything within their power to save their child no matter how long their child lives.
Sometimes, we do everything possible in the hope something will change the outcome.
The child should be allowed to America and treatment given. If it, fails the parent's will still lose their child but will not be left
with the question:- " What if ?"
I would send the child with blessings and let what will be, be. HOPE, is what sustains us all, in the darker moments of life.
This family and child have the right to keep that Hope alive till the moment the flame flickers out naturally.
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According to the America neurologist in charge of this experimental treatment it only has a 10% chance of working. It is possible that Charlie Gard's condition is beyond help. Anyway the neurologist is flying over to the UK next week to check out the baby's condition for himself, to see if he would be a suitable guinea pig.
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Aye!
http://www.bbc.co.uk/news/uk-england-london-40691478
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His parents think that it is better that he is alive, than he is dead.
I agree with his parents.
He won't be alive much longer, whatever happens. Not necessarily referring to HWB, but often the so-called "pro-life" movement proves heartless, cruel and cold.
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And dangerous and ignorant.
I despair of this now. The parents plea for calm is 'people say nasty things about us too.'
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It will give the parent's a sense of closure, knowing that everything that could be done, was done.
The parent's have to try and do everything within their power to save their child no matter how long their child lives.
Sometimes, we do everything possible in the hope something will change the outcome.
The child should be allowed to America and treatment given. If it, fails the parent's will still lose their child but will not be left
with the question:- " What if ?"
I would send the child with blessings and let what will be, be. HOPE, is what sustains us all, in the darker moments of life.
This family and child have the right to keep that Hope alive till the moment the flame flickers out naturally.
Sanctimonious crap. The doctors should be listened to, as they are the experts. One feels for his parents, but they are too emotionally involved to make good decisions.
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Sanctimonious crap. The doctors should be listened to, as they are the experts. One feels for his parents, but they are too emotionally involved to make good decisions.
I think that there is a huge fear of what happens next when a child dies. I think this is what is dyivibg them - fear of loss. It's understandable but it isn't right. And they seem to have totally lost sight of the humanity of those who are responsible for their son's care.
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Sanctimonious crap. The doctors should be listened to, as they are the experts. One feels for his parents, but they are too emotionally involved to make good decisions.
I agree, but I think it is right that in cases where the medical opinion and the opinion of the parents aren't the same that the case should be referred to the courts for a final decision.
Both the parents and the medical team involved in the care are too close to the situation to be completely objective and an independent third party should ultimately be responsible for the decision.
Watching the news tonight this case has really got out of hand - the notion that Great Ormond St staff and parents of children being treated are being harassed is simply unacceptable.
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He won't be alive much longer, whatever happens. Not necessarily referring to HWB, but often the so-called "pro-life" movement proves heartless, cruel and cold.
Like this sort of thing, you mean?
IMHO that means more than "well wishers" who want him to die
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Like this sort of thing, you mean?
Yes, like that. Who posted it?
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Yes, like that. Who posted it?
You'll be amazed.
Not.
http://tinyurl.com/y8bwhjzm
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It is appalling that death threats have been sent to the staff at the hospital! There are some very sick people around! >:( I believe the doctors treating that poor little boy are thinking of what is best for him. His latest brain scan is not good apparently.
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And looks like the legal part of this is now over. Let's hope that the end of the poor child can be something that gives the patents some closure.
http://www.bbc.co.uk/news/uk-england-40708343
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I don't think there ever is such a thing as 'closure' with the death of a child. Just the next thing to deal with. From talking to parents who have lost children it's a case of finding a way of living with the loss and grief and the sense of someone always being missing.
The phrasing I've heard in regard to the judgement is that it is 'too late' for the treatment to be effective. I wonder if the next thing is going to be a suggestion that GOSH have been negligent in not securing experimental treatment for him sooner.
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Sorry, didn't mean to suggest there would be closure for the death just that they the next steps need not to be in the public eye, and to get some closure on what has happened because of that. I agree that the term 'too late' could cause further problems as it implies that there was a time it wasn't too late which is not clear.
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Poor little chap. :( I think it is kinder this way, better than the parents going to the US and discovering that in the end there is nothing which can be done for their son.
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I don't think there ever is such a thing as 'closure' with the death of a child. Just the next thing to deal with. From talking to parents who have lost children it's a case of finding a way of living with the loss and grief and the sense of someone always being missing.
The phrasing I've heard in regard to the judgement is that it is 'too late' for the treatment to be effective. I wonder if the next thing is going to be a suggestion that GOSH have been negligent in not securing experimental treatment for him sooner.
I suspect you may be right, Rhi. I think it's such a sad case though which, for various reasons, has hit the headlines and inflamed emotions from a variety of people on both sides.
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I suspect you may be right, Rhi. I think it's such a sad case though which, for various reasons, has hit the headlines and inflamed emotions from a variety of people on both sides.
It's very difficult to express an opinion on the case without of sounding as if you are condemning some of those involved. If you say that it is for the best that no treatment happens, it feels like you are saying the patents don't want the best for their child. If you say that the parent's wishes should be respected because they care for the child, it reads as if you are saying the medical staff are uncaring
It seems tragic all round, and in addition to those closest to the child, it must be horrendous if you were a judge or a lawyer in the case. The need for a 3rd party is clear but these type of decisions take their cost. It's not a job any judge can have wanted.
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I don't think this case is going away. And I'm uncomfortable by the hate it seems to have unleashed.
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I don't think this case is going away. And I'm uncomfortable by the hate it seems to have unleashed.
I would suggest the hate has always been there. It's a perfect case to get people angry. It's complex and we are effectively powerless. Any opinion creates a side. There are vested interests involved. As I have noted previously, if you want to be disturbed by hate, visit some of the nerdy sites on Dr Who.
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And looks like the legal part of this is now over. Let's hope that the end of the poor child can be something that gives the patents some closure.
http://www.bbc.co.uk/news/uk-england-40708343
I think this is the right decision and the way in which the case has been considered through the legal system is a testament to the way that the best interests of the child is alway put first in the UK.
While I cannot begin to think about what the parents are going through I do not believe they have come out of this with a great deal of credit. Even today in their statement they were implying that had Charlie been treated a few months ago he would have potentially been cured. That view has been flatly denied by the medical professionals involved. They still seem to be railing against the system, believing that the legal system prevented their child from being cured, rather than protecting his best interests.
I hope now that the media will move along and leave everyone involved in peace and to find some closure.
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I disagree with much of what his parents have chosen but I doubt I am in a place to judge them as to their credit coming out of this. I am not sure what that place might be.
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I think railing against someone is natural in times of extreme distress. And they strike me as being very young.
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Sanctimonious crap. The doctors should be listened to, as they are the experts. One feels for his parents, but they are too emotionally involved to make good decisions.
We have had several infants die in our family and two survived because we didn't listen to the doctors who sent them home to die.
You are not in a position to judge anyone, anyone who have lost children at various ages.
Sanctimonious crap... which you refer to - comes from experience of grief and watching children die. Something I hope you never have to experience.
My nieces both born with endocardialfibroelastosis the first in 1986 and after heart scans and echos was sent home to die with the condition and suffering apneoa too. We asked for a second opinion and was told no. It was our GP who gave us the idea to take her to a different hospital saying she has suffered an apneoa attack whilst passing. Before we left the other hospital our vicar came and annointed her for healing and because she would never get to be christened. Children do not live past 12 weeks and her condition critical.
The hospital did further tests and part of the disease had completely healed in one ventricle. They said if they could get her through to twelve then a heart transplant would be the only hope. She is a very beautiful woman now. She has her own business three beautiful children and still has an heart condition. Regular checks show no deterioration and had we just gone home without annointing and without the second opinion she would have been left to die because doctors said no cure and cannot get better.
When you can speak from a place of knowledge in such situations then you can tell me I am speaking Sanctamonious crap.
Truth is, I know better than you when it comes to doctors and conditions they give no hope for.
We have lost children and we have experienced the trauma of them being sent home to die of terminal conditions.
We have been blessed by God and the medical science has become enlightened to the fact not everything is as it first appears and can be changed.
The two separate scans and echos show the before and after. My other niece who had her first heart attack by the age of 2 years is still alive. They said the condition does not clear up and does not go away. But she was anointed too, and she was worse than the first niece.
Her condition appears to have cleared however she is 29 years old and after being raped became depressed and suicidal.
Some will remember from the time we asked for prayers. She is Bi-polar and now has MS.
Married with 2 sons she is brave and gets on with life. Sometimes you do not realise how blessed you actually are.
Sometimes you don't see or know the stress in the life of others.
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I am of the opinion Charlie Guard's doctors knew best in his case.
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Crikey, Sass - your family has more than its share of bad luck.
On the issue of the parents - it is impossible for most of us to contemplate how they are feeling so I don't feel as if we should be passing any kind of comments/judgement about them at what is an incredibly painful time for them.
But linking to Rhi's comment about the hatred engendered by the case; it is something that worries me more and more about our society that the more sensible, evidence based approach to issues is rejected in favour of an emotion heavy response that is based on a need to blame someone, anyone - for a situation where blame should not even be in the equation.
Maybe it's a case of Plus Ca Change as NS suggests - but it doesn't feel that way to me. It feels to me as if there is more of a fundamental shift away from sensible discussion towards a self-centred belief in the force and validity of one's own feelings and emotions with a complete disregard for all other arguments no matter however good they are with respect to any given situation.
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I agree to some extent Trent. I think this situation has seen the power of social media (which the parents here knew exactly how to use, as many young people do) and the era of fake news and so on.
That said, some of the reaction has reminded me of that to the death of Princess Diana, when the much of the country seemed to lose its marbles and hate and grief were hard to distinguish. I guess her death and the reaction to it owed a lot to her use of the media too, but I still can't account for why the nation went quite so mental. And I think her death was sadder now than I've ever done.
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the power of social media
Yes - a double-edged sword if ever there was one.
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Yes - a double-edged sword if ever there was one.
It has its uses (for those interested, which I'm not, personally), but as the Charlie Gard case demonstrates (and many others) it allows people to emote and in some cases be an arse faster and to a wider audience than ever before.
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It has its uses (for those interested, which I'm not, personally), but as the Charlie Gard case demonstrates (and many others) it allows people to emote and in some cases be an arse faster and to a wider audience than ever before.
And it allowed feelings to be stoked, and by false information and lies. It's concerning.
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I feel I need to clarify a little after Trent's comments. It isn't so much a case of plus ça change but that this is just a long line in issues where this 'hate' has been apparent. I've argued before that the change isn't that we hate more but there are more ways for the hate to be expressed and scene. Where once hate was merely shown by shouting at the TV it is now across social media and is echoed by being reported.
I agree that there is an issue with ignoring other's arguments but I'm not sure if that has not always been there. In terns of studies of how we defend opinions, this appears to be nothing new. I wonder if there was a time when,due to a particular mix of societal consensus and the development of technology, it felt as if there was less disagreement.
Janan Ganesh has an interesting column in the FT today arguing that Brexit and Trumpism arise not out of a general uncertainty but because things are relatively stable and people have not ever experienced real uncertainty. Therefore they are willing to take more risks with the status quo because they are used to things turning out OK. I'm not sure how much I buy into it but certainly it seems to me there was a consensus once about society stumbling on together as in a three legged race. We now seems to being in all directions at once and kicking each other, and yet we are not in a bad place in many ways.
I am always conscious when we comment on how things are getting worse in some way, that that has been a refrain of curmudgeons throughout the ages, always looking back to some mythical golden age. Also I am often reminded of the film Pleasantville, where what is obviously a beneficial change for many and for society, can cause difficulties and issues for some. That we listen more to people rather than just riding roughshod across them is surely AB advance. The great work carried out by GOSH has been built around listening to and understanding parents and children. Something that once would have been extremely unusual. On this occasion,due to a mix of circumstances, it has become a full three rung circus, but it is not the norm.
Despite the media coverage of this case, I think it is one where there is little to learn. As I noted on this before, the nostrum 'hard cases make bad law' seems to apply. This feels much more significant in a grand scale, I suspect, than it actually is. It's significance in the specific is undoubted but beyond that a tragedy of circumstance.
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It has its uses (for those interested, which I'm not, personally), but as the Charlie Gard case demonstrates (and many others) it allows people to emote and in some cases be an arse faster and to a wider audience than ever before.
Message boards are a form of social media, Shaker, so in the sense of using then and having administered more than 1, I don't see how you can say you aren't interested.
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Some shocking stuff here about the US doctor, if accurate.
http://www.bbc.co.uk/news/uk-england-london-40712913
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Message boards are a form of social media, Shaker, so in the sense of using then and having administered more than 1, I don't see how you can say you aren't interested.
I've never thought of them as such, given they've been around so long (practically since the birth of the Web). I'd have thought that when people say social media they mean primarily Facebook, Twitter, Instagram etc. (SnapChat?) all of which are vastly more popular than message boards which we're often told are dying out in preference to (and because of) the aforementioned.
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Some shocking stuff here about the US doctor, if accurate.
http://www.bbc.co.uk/news/uk-england-london-40712913
Turns out chappy has financial interests in the experimental treatment (NBT?) he was offering.
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I've never thought of them as such, given they've been around so long (practically since the birth of the Web). I'd have thought that when people say social media they mean primarily Facebook, Twitter, Instagram etc. (SnapChat?) all of which are vastly more popular than message boards which we're often told are dying out in preference to (and because of) the aforementioned.
I don't see declining popularity or their age as meaning they aren't social media. Here we are commenting as many do on this case, with people via an electronic medium with a group of disparate people and the comments on view to anyone on the net. Seems like social media to me.
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Some shocking stuff here about the US doctor, if accurate.
http://www.bbc.co.uk/news/uk-england-london-40712913
I wonder if some of the shock is related to how the different health systems work. Doctors having financial interests in treatments they develop is common practice in the U.S. Now I understand the ethical questions that might be raised but they are ethical questions which the U.S. has decided on differently.
As to not reading the decision, I'm not sure that is particularly shocking. It's a legal decision and he's a doctor. I also think that given we have been covering an amount on here about fake news, that determining much of the truth from a single report here with no input from the doctor is unwise.
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I don't see declining popularity or their age as meaning they aren't social media. Here we are commenting as many do on this case, with people via an electronic medium with a group of disparate people and the comments on view to anyone on the net. Seems like social media to me.
It appears that one definition of social media is social networking, in which case Facebook is in and forums - at least this one - are out. In a few cases the real names and locations of posters are known, but this isn't generally the case and is accidental and incidental; personal contact between people known to each other isn't the raison d'etre of the forum (as it is with Facebook, for instance), which is to pass comment on a specific issue or range of issues.
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It appears that one definition of social media is social networking, in which case Facebook is in and forums - at least this one - are out. In a few cases the real names and locations of posters are known, but this isn't generally the case and is acvidental and incidental; personal contact between people known to each other isn't the raison d'etre of the forum (as it is with Facebook, for instance), which is to pass comment on a specific issue or range of issues.
I think you are protesting a tad muchly but it's off topic in terms of the specific so I will leave it.
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It appears that one definition of social media is social networking, in which case Facebook is in and forums - at least this one - are out. In a few cases the real names and locations of posters are known, but this isn't generally the case and is acvidental and incidental; personal contact between people known to each other isn't the raison d'etre of the forum (as it is with Facebook, for instance), which is to pass comment on a specific issue or range of issues.
Interesting point about identification of people on message boards and face book - I hadn't thought of that.
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I wonder how the parents of other children with serious illnesses being treated GOS feel about all the attention given to this child?
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I also think that given we have been covering an amount on here about fake news, that determining much of the truth from a single report here with no input from the doctor is unwise.
Hence 'if accurate'.
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I wonder how the parents of other children with serious illnesses being treated GOS feel about all the attention given to this child?
I doubt very much that they care about that. Much more likely they are bothered by the ongoing harassment of staff and the fact that their very sick children can't be treated (and possibly die) in peace because of the noise from the protestors outside the building.
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As to not reading the decision, I'm not sure that is particularly shocking. It's a legal decision and he's a doctor. I also think that given we have been covering an amount on here about fake news, that determining much of the truth from a single report here with no input from the doctor is unwise.
I'm not sure it is so much the issue of not having read the legal decision. More significant is that the doctor had not seen the child, nor had fully read the clinical notes and scan results. Yet he was indicating that the baby might benefit from the experimental treatment. This is officially reported in the court judgement, so one would hope not fake news.
Only in the last few days did Prof Hirano fully assess Charlie's condition and concluded that the experimental treatment would not be of benefit (and I gather could never have been of benefit as Charlie had suffered catastrophic and irreversible brain damage months ago).
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I'm not sure it is so much the issue of not having read the legal decision. More significant is that the doctor had not seen the child, nor had fully read the clinical notes and scan results. Yet he was indicating that the baby might benefit from the experimental treatment. This is officially reported in the court judgement, so one would hope not fake news.
Only in the last few days did Prof Hirano fully assess Charlie's condition and concluded that the experimental treatment would not be of benefit (and I gather could never have been of benefit as Charlie had suffered catastrophic and irreversible brain damage months ago).
Even with it being a court report, it only shows the answers to the questions asked. It is insufficient knowledge to judge what happened in a period of ober six months, and what communications took place. It is not sufficient to know if the behaviour of the doctor was shocking or not.
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Even with it being a court report, it only shows the answers to the questions asked. It is insufficient knowledge to judge what happened in a period of ober six months, and what communications took place. It is not sufficient to know if the behaviour of the doctor was shocking or not.
I didn't describe it as shocking, but it is concerning:
'On 13 July he [Prof Hirano] stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.'
This from the court hearing yesterday and reporting on Prof Hirano's own testimony at an earlier hearing on 13th July. The last bit about not having read the Judge's decision seems the least important to me.
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I doubt very much that they care about that. Much more likely they are bothered by the ongoing harassment of staff and the fact that their very sick children can't be treated (and possibly die) in peace because of the noise from the protestors outside the building.
Good point!
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I didn't describe it as shocking, but it is concerning:
'On 13 July he [Prof Hirano] stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.'
This from the court hearing yesterday and reporting on Prof Hirano's own testimony at an earlier hearing on 13th July. The last bit about not having read the Judge's decision seems the least important to me.
In this case it feels to me as if you have edited a post to take out bits and then ignore what they were replying to, in order to create a strawman with which to argue. I suggest you reread the thread to see why I used the word shocking and why there isn't an implication that you used it. Further at no point have I implied that not reading the judge's decision was that important. In addition, you appear to have ignored the point about the court report not being an investigation into what happened over the six months involving this doctor. At no point have I said that there is nothing to be concerned about just suggested some caution on lack of context.
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My personal opinion, and I do not know if it is in any way right or wrong, is that the couple could well be be/already are? considering themselves as celebrities. I do so hope they won't spend the next few months being interviewed on every TV station etc.
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http://www.bbc.co.uk/news/uk-england-london-40716292
Charlie Gard's parents want to take him home to die. I suppose the request will only be granted if it doesn't cause the poor little man any suffering.
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In this case it feels to me as if you have edited a post to take out bits and then ignore what they were replying to, in order to create a strawman with which to argue. I suggest you reread the thread to see why I used the word shocking and why there isn't an implication that you used it.
You used the word 'shocking' in direct response to my comment where I didn't use the word - hence my point. If your want to ramp up the emotiveness, by using a term such as 'shocking' then direct it to other posters who had already upped the ante in terms of emotiveness, but not with me as I didn't.
Further at no point have I implied that not reading the judge's decision was that important. In addition, you appear to have ignored the point about the court report not being an investigation into what happened over the six months involving this doctor. At no point have I said that there is nothing to be concerned about just suggested some caution on lack of context.
Sure - but happy to answer that too, and details are contained in the court judgements.
So it is clear from the court judgement that Prof Hirano had provided input to the court hearings, both oral and written through the period from January -July. To quote:
'In the months between January and July, the Professor provided written and oral evidence for the best interests hearing in April and, after the Court decided that NBT was not in Charlie’s best interests, he went on to provide further written evidence for the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the letter indicating that he had new information that changed the picture for Charlie, that brought this case back before the High Court.'
Indeed, you can see reference to him (albeit anonymised as Dr I) in the judgements from April onwards.
However in the hearing on 13th July he indicated that he had not appraised himself of the full clinical details of the case, albeit he had been given access to the information. To quote again:
'On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) ...'
So he was involved in the case throughout - until early July, although he hadn't actually appraised himself fully of the case (and certainly not seen Charlie), he was of the opinion that the experimental therapy would be of no benefit. He then changed his view on the basis of new research data, although he still hadn't read all the information. He then visited the UK discussed the case in detail with the clinical team (not sure he actually visited Charlie) and reverted back to his original view that the therapy could not help.
All that comes from the court Judgement and statements provided to the court.
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You used the word 'shocking' in direct response to my comment where I didn't use the word - hence my point. If your want to ramp up the emotiveness, by using a term such as 'shocking' then direct it to other posters who had already upped the ante in terms of emotiveness, but not with me as I didn't.
Sure - but happy to answer that too, and details are contained in the court judgements.
So it is clear from the court judgement that Prof Hirano had provided input to the court hearings, both oral and written through the period from January -July. To quote:
'In the months between January and July, the Professor provided written and oral evidence for the best interests hearing in April and, after the Court decided that NBT was not in Charlie’s best interests, he went on to provide further written evidence for the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the letter indicating that he had new information that changed the picture for Charlie, that brought this case back before the High Court.'
Indeed, you can see reference to him (albeit anonymised as Dr I) in the judgements from April onwards.
However in the hearing on 13th July he indicated that he had not appraised himself of the full clinical details of the case, albeit he had been given access to the information. To quote again:
'On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) ...'
So he was involved in the case throughout - until early July, although he hadn't actually appraised himself fully of the case (and certainly not seen Charlie), he was of the opinion that the experimental therapy would be of no benefit. He then changed his view on the basis of new research data, although he still hadn't read all the information. He then visited the UK discussed the case in detail with the clinical team (not sure he actually visited Charlie) and reverted back to his original view that the therapy could not help.
All that comes from the court Judgement and statements provided to the court.
. I see you didn't take my advice and reread the thread. I used shocking because it had been used by Rhiannon. Your reply was picking up my reply to Rhiannon, so I used it in the context of that. I didn't imply that you said it. Message boards are not simple one on one conversations.
The further details provided are still not based an investigation of the overall involvement of the doctor but of what is relevant to the decision as regards Charlie Gard. Is there prima facie evidence that some form of invetsyifayion would be useful (leaving aside the obvious impossibility of that happening here)? Borderline, I would suggest. It's simply not clear what the agreed involvement of the doctor was meant to be.
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. I see you didn't take my advice and reread the thread. I used shocking because it had been used by Rhiannon.
Indeed - hence 'If your want to ramp up the emotiveness, by using a term such as 'shocking' then direct it to other posters who had already upped the ante in terms of emotiveness, but not with me as I didn't.'
The further details provided are still not based an investigation of the overall involvement of the doctor but of what is relevant to the decision as regards Charlie Gard. Is there prima facie evidence that some form of invetsyifayion would be useful (leaving aside the obvious impossibility of that happening here)? Borderline, I would suggest. It's simply not clear what the agreed involvement of the doctor was meant to be.
The condition that Charlie has is incredibly rare, and therefore there are a tiny pool of worldwide experts who will all know each other via the academic community. GOSH engaged with that community to support them in coming to their view as to what was in Charlie's best interests. Further the court sought the expert input of members of that community (including Prof Hirano) throughout the 6 months of court hearings. Key clinical evidence was shared and Prof Hirano was invited to come to the UK to examine Charlie - only took up that offer last week.
Prof Hirano first indicated that treatment wouldn't help, then changed his mind in early July, and then reverted back to his first view in the last few days.
In terms of what involvement the doctor should have there are two stages - during the earlier period he was providing an impartial second opinion. But his involvement changed when he offered to treat - at that point he had a direct involvement and should only have proffered that view on the basis of sufficient clinical evidence. Not having seen the baby and not having appraised himself of the full clinical evidence doesn't meet those criteria in my view and also in the view of the judge.
'It seems to me to be a remarkably simple proposition that if a doctor is to give evidence to this court about the prospect of effective treatment in respect of a child whose future is being considered by the court, that Dr should see the patient before the court can sensibly rely upon his evidence'
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Indeed - hence 'If your want to ramp up the emotiveness, by using a term such as 'shocking' then direct it to other posters who had already upped the ante in terms of emotiveness, but not with me as I didn't.'
My reply to Rhiannon who used the term was questioning whether it was shocking. In replying to you I was underlining that it was within that context that my reply was based. This is not 'ramping up the emotivrness' but contextualising what my reply was addressing. You appear to be struggling with the post being contextual in the thread.
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I wonder if Prof Hirano would have bothered to come to the UK at all if the Charlie Gard case hadn't had world wide publicity?
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The condition that Charlie has is incredibly rare, and therefore there are a tiny pool of worldwide experts who will all know each other via the academic community. GOSH engaged with that community to support them in coming to their view as to what was in Charlie's best interests. Further the court sought the expert input of members of that community (including Prof Hirano) throughout the 6 months of court hearings. Key clinical evidence was shared and Prof Hirano was invited to come to the UK to examine Charlie - only took up that offer last week.
Prof Hirano first indicated that treatment wouldn't help, then changed his mind in early July, and then reverted back to his first view in the last few days.
In terms of what involvement the doctor should have there are two stages - during the earlier period he was providing an impartial second opinion. But his involvement changed when he offered to treat - at that point he had a direct involvement and should only have proffered that view on the basis of sufficient clinical evidence. Not having seen the baby and not having appraised himself of the full clinical evidence doesn't meet those criteria in my view and also in the view of the judge.
'It seems to me to be a remarkably simple proposition that if a doctor is to give evidence to this court about the prospect of effective treatment in respect of a child whose future is being considered by the court, that Dr should see the patient before the court can sensibly rely upon his evidence'
And that opinion would seem to me to indicate that either the court had not established that Dr Hirano had seen Charlie Gard, or that they knew and ignored it. Either way it is a statement about what the court should do not Hirano.
It still doesn't address that the court was not investigating Hirano's conduct, nor does it make clear that there was any agreement to see Charlie Gard thst Hirano did not to, or that there was a full understanding by Hirano of what the requirements may or may not have been from the court.
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I wonder if Prof Hirano would have bothered to come to the UK at all if the Charlie Gard case hadn't had world wide publicity?
Maybe not, so what?
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And that opinion would seem to me to indicate that either the court had not established that Dr Hirano had seen Charlie Gard, or that they knew and ignored it. Either way it is a statement about what the court should do not Hirano.
The court know that Prof Hirano hadn't seen Charlie - but while he was acting as an independent expert (one of many) that wasn't critical - on 6th July everything changed, when he said he would be prepared to treat Charlie. At that point the court decided that they could not accept this option as being in Chalrie's best interests until Prof Hirano had actually seen the patient.
It still doesn't address that the court was not investigating Hirano's conduct, nor does it make clear that there was any agreement to see Charlie Gard thst Hirano did not to, or that there was a full understanding by Hirano of what the requirements may or may not have been from the court.
Where did I say that the court were investigating Hirano's conduct - I never did. What the court said was that they could not accept that an offer of treatment was in Charlie's best interests unless they were convinced that the Doctor making that offer had fully assessed the clinical condition of the patient - which would include having examined the patient and the relevant clinical history.
Hirano had not done that when he offered to provide treatment - the court then requested that he visit to make a proper assessment (which he had not done up to that point) - he agreed, visited and concluded that treatment was not in Charlie's best interests.
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The court know that Prof Hirano hadn't seen Charlie - but while he was acting as an independent expert (one of many) that wasn't critical - on 6th July everything changed, when he said he would be prepared to treat Charlie. At that point the court decided that they could not accept this option as being in Chalrie's best interests until Prof Hirano had actually seen the patient.
Where did I say that the court were investigating Hirano's conduct - I never did. What the court said was that they could not accept that an offer of treatment was in Charlie's best interests unless they were convinced that the Doctor making that offer had fully assessed the clinical condition of the patient - which would include having examined the patient and the relevant clinical history.
Hirano had not done that when he offered to provide treatment - the court then requested that he visit to make a proper assessment (which he had not done up to that point) - he agreed, visited and concluded that treatment was not in Charlie's best interests.
And again I didn't say you had said it was an investigation. It's a point i have made a couple of times, since it is relevant to how we view how much information and for what purpose the court's statements are covering.
You now sem to be arguing that Hirano was wrong not to come to the UK to examine Charlie Gard before July the 6th, and that he didn't need to come till then because of what the court said.
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I wonder if Prof Hirano would have bothered to come to the UK at all if the Charlie Gard case hadn't had world wide publicity?
Not entirely sure that is fair.
What I am more interested in is why he changed his mind about the potential effectiveness of the treatment from April to July. In the April judgement Dr I (whom we presume to be Hirano) said:
'Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.'
Then suddenly in July he changed his mind - having now offered to provide the treatment I don't think he could reasonably have refused to visit Charlie in the UK.
Worth noting too that Hirano was involved in providing expert opinion way back at the beginning of the year, long before the case had generated any meaningful publicity.
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And again I didn't say you had said it was an investigation. It's a point i have made a couple of times, since it is relevant to how we view how much information and for what purpose the court's statements are covering.
You now sem to be arguing that Hirano was wrong not to come to the UK to examine Charlie Gard before July the 6th, and that he didn't need to come till then because of what the court said.
I think he should have should have come to examine Charlie prior to offering the treatment. This seems to be the view of the court too, which is why they indicated that they wouldn't accept his opinion that treatment was in Charlie's best interests without the doctor potentially giving the treatment having seen the patient.
Not sure why this is so challenging for you to understand.
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I think he should have should have come to examine Charlie prior to offering the treatment. This seems to be the view of the court too, which is why they indicated that they wouldn't accept his opinion that treatment was in Charlie's best interests without the doctor potentially giving the treatment having seen the patient.
Not sure why this is so challenging for you to understand.
What I am struggling with is what of anything I have written you think is somehow arguing against the above. I have simply been pointing out that I don't know enough of Hirano's overall involvement or understanding of his involvement over six months to properly judge much about him. Yes, it his actions seem odd to me but he wasn't being investigated so his side in that sense wasn't going to be put forward.
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Maybe not, so what?
So possibly it was more for getting his research publicised rather than helping Charlie Gard?
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So possibly it was more for getting his research publicised rather than helping Charlie Gard?
Again so what?
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Again so what?
Well surely that wouldn't be to the chap's credit, especially if it got the parent's hopes up.
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I have simply been pointing out that I don't know enough of Hirano's overall involvement or understanding of his involvement over six months to properly judge much about him.
You can find this out from the various court judgements and submissions which is why I summarised them. So now you know.
Yes, it his actions seem odd to me but he wasn't being investigated so his side in that sense wasn't going to be put forward.
Sure he was never being 'investigated' in an adversarial manner - he wasn't on 'trial'. But the moment he claimed that his experimental treatment would be in Charlie's best interest and that he would offer it, that claim did need to be investigated by the court.
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Well surely that wouldn't be to the chap's credit, especially if it got the parent's hopes up.
Just because someone has nice motivatiibs doesn't make them right in mefical terms, just because they have selfish motivation doesn't make them wrong.
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Well surely that wouldn't be to the chap's credit, especially if it got the parent's hopes up.
I think there is little doubt that the change of view by Hirano as to whether the experimental treatment might work did provide false hope for Charlie's parents. They said as much in their statement yesterday.
Why he did it, I cannot say, but it seems to me to have been ill advised, given that as soon as he came to the UK, met with the clinical team treating Charlie he reversed his opinion again.
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You can find this out from the various court judgements and submissions which is why I summarised them. So now you know.
Sure he was never being 'investigated' in an adversarial manner - he wasn't on 'trial'. But the moment he claimed that his experimental treatment would be in Charlie's best interest and that he would offer it, that claim did need to be investigated by the court.
The claim, yes not his behaviour. And since the onvolvement over 6 months all that is being looked at are the medical aspects there is not going to be a discussio of what Hiramo thougt were his obligations, or tge overall context of the involvement not rekevant to the medical decision.
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I think there is little doubt that the change of view by Hirano as to whether the experimental treatment might work did provide false hope for Charlie's parents. They said as much in their statement yesterday.
Why he did it, I cannot say, but it seems to me to have been ill advised, given that as soon as he came to the UK, met with the clinical team treating Charlie he reversed his opinion again.
Surely before coming to the UK he should have found out much more about the little lad's condition, if he really wanted to help him.
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Surely before coming to the UK he should have found out much more about the little lad's condition, if he really wanted to help him.
Or indeed if he really wanted to look good after his involvement
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Surely before coming to the UK he should have found out much more about the little lad's condition, if he really wanted to help him.
I think before offering treatment implying it might help he should have both appraised himself of the full clinical records and also seen Charlie.
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I think before offering treatment implying it might help he should have both appraised himself of the full clinical records and also seen Charlie.
Of course he should.
I see that it is likely the child might be offered hospice care, although the parents are insisting he has all the necessary care staff at their home. However sad his case, the NHS should definitely not be expected to cater to his parents wishes, especially as there are so many other sick children whose parents would be entitled to the same treatment.
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Of course he should.
I see that it is likely the child might be offered hospice care, although the parents are insisting he has all the necessary care staff at their home. However sad his case, the NHS should definitely not be expected to cater to his parents wishes, especially as there are so many other sick children whose parents would be entitled to the same treatment.
How many other children is"so many'?
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How many other children is"so many'?
NS you know as well as I do that there are other terminally ill children in this country. Their parents might like them to spend their last days at home if the staff to care for them were made available.
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NS you know as well as I do that there are other terminally ill children in this country. Their parents might like them to spend their last days at home if the staff to care for them were made available.
Amd how many is that since you state there are 'so mamy'? How many do get home? How many don't?
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NS you know as well as I do that there are other terminally ill children in this country. Their parents might like them to spend their last days at home if the staff to care for them were made available.
Floo;
With respect; even were the staff and portable equipment (which costs a bomb) available, do you realise how much it would cost to offer the service to every parenrt whose child was in a similar situation?
You are talking about millions of pounds the NHS simply doesn't have.
Or are you willing to take a serious tax increase to cover the costs?
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Floo;
With respect; even were the staff and portable equipment (which costs a bomb) available, do you realise how much it would cost to offer the service to every parenrt whose child was in a similar situation?
You are talking about millions of pounds the NHS simply doesn't have.
Or are you willing to take a serious tax increase to cover the costs?
I think you have misread my post. I am saying the NHS can't possibly afford to pay for that level of care at home, if you do it for one you have to do it for all who wish it.
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Floo;
With respect; even were the staff and portable equipment (which costs a bomb) available, do you realise how much it would cost to offer the service to every parenrt whose child was in a similar situation?
You are talking about millions of pounds the NHS simply doesn't have.
Or are you willing to take a serious tax increase to cover the costs?
To be fair to Floo, she is arguing the same as you are? But I would like to see some figures and proper analysis of what the numbers are in terms of a 'similar situation', rather than just assume that it is preventative. Note, I don't think that it will be allowed on the basis that it further increases suffering. If it is about costs, then theoretically the money raised could be used, and the couple seem to be seeking volunteers to care for the child.
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I'm not sure how many of the answers are on this website but there does seem to be some useful information.
http://www.togetherforshortlives.org.uk
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To be fair to Floo, she is arguing the same as you are? But I would like to see some figures and proper analysis of what the numbers are in terms of a 'similar situation', rather than just assume that it is preventative. Note, I don't think that it will be allowed on the basis that it further increases suffering. If it is about costs, then theoretically the money raised could be used, and the couple seem to be seeking volunteers to care for the child.
There is another aspect to this which is privacy.
While it might be tempting to think that their own home would provide the best chance for a quiet and private place to say goodbye, I think the huge levels of publicity will make this impossible. Sadly, I have concerns that were they to move the baby to their home the media circus and the hangers on will move too. Perhaps the best place is a hospice selected secretly, so that the press etc don't know where it is.
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There is another aspect to this which is privacy.
While it might be tempting to think that their own home would provide the best chance for a quiet and private place to say goodbye, I think the huge levels of publicity will make this impossible. Sadly, I have concerns that were they to move the baby to their home the media circus and the hangers on will move too. Perhaps the best place is a hospice selected secretly, so that the press etc don't know where it is.
Good point, one can picture the photographers trying to get the first picture of the grieving parents.
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There is another aspect to this which is privacy.
While it might be tempting to think that their own home would provide the best chance for a quiet and private place to say goodbye, I think the huge levels of publicity will make this impossible. Sadly, I have concerns that were they to move the baby to their home the media circus and the hangers on will move too. Perhaps the best place is a hospice selected secretly, so that the press etc don't know where it is.
I agree, they should be able to share the time their boy has left in private.
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Yes, the press would be all over it. Imagine also demonstrations outside their house, with hostile slogans about doctors and so on, then a police cordon, etc. Dignity, what dignity.
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A good piece on perspective here.
https://www.theguardian.com/commentisfree/2017/jul/26/charlie-gard-health-service-nhs-failure#img-1
I'm struck by the suffering in his mother's face. And I'm angry at how this couple and their son have been used.
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A good piece on perspective here.
https://www.theguardian.com/commentisfree/2017/jul/26/charlie-gard-health-service-nhs-failure#img-1
I'm struck by the suffering in his mother's face. And I'm angry at how this couple and their son have been used.
That's pretty good. I see the reference to Being Mortal by Atul Gawande which I thought was excellent
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So it looks like a hospice will be the next stage. Even so it is at the don't of volunteers and a contribution of a ventilating machine.
https://www.theguardian.com/uk-news/2017/jul/26/charlie-gard-can-be-cared-for-in-hospice-his-parents-tell-court
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http://www.bbc.co.uk/news/uk-england-40733491
Apparently there is no agreement at present.
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So it looks like a hospice will be the next stage. Even so it is at the don't of volunteers and a contribution of a ventilating machine.
https://www.theguardian.com/uk-news/2017/jul/26/charlie-gard-can-be-cared-for-in-hospice-his-parents-tell-court
As far as costs are concerned, the parents do have the consequences of their crowd-funding available.
Earlier comments about the press and privacy - I hope that the parents are allowed to grieve in private, but we should not forget that it was they who summoned this particular genie from its bottle.
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Excellent piece by Melanie Phillips (can't believe I just wrote that)
http://www.melaniephillips.com/cruel-ignorant-campaign/
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Excellent piece by Melanie Phillips (can't believe I just wrote that)
http://www.melaniephillips.com/cruel-ignorant-campaign/
Stopped clock right twice a day and all that.
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http://www.bbc.co.uk/news/uk-england-40745988
The judge has ruled that Charlie Gard is to be moved to a hospice and have his life support removed.
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NS 157
Thank you for that link. I have just listened through.
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Charlie Gard is now at rest.
http://www.bbc.co.uk/news/uk-england-london-40752120
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To me it would seem fitting that in view of the preceding the whole affair, and this thread included, come to a painful yet inevitable and final conclusion.
I doubt that either will come to pass.
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Comment by Gregory Daniels.
http://www.nydailynews.com/opinion/charlie-gard-hope-hate-article-1.3358078
Edited to remove copied article and put in link
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It's certainly one of them.
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What happens to the money now?
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What happens to the money now?
I think there was talk of a Foundation in Charlie's name.
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I think there was talk of a Foundation in Charlie's name.
I heard that too.
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Excellent piece
https://reaction.life/charlie-gard-facts/
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Excellent piece
https://reaction.life/charlie-gard-facts/
You're not wrong - that's one of the best (because clearest) commentaries I've seen.
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Excellent piece
https://reaction.life/charlie-gard-facts/
Spot on.
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Thank you, NS. Another very clear article.
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Excellent piece
https://reaction.life/charlie-gard-facts/
Beyond excellent - even a proven ignoramus like me can understand exactly what is being said!
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Agreed, it's very good indeed.
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To me it would seem fitting that in view of the preceding the whole affair, and this thread included, come to a painful yet inevitable and final conclusion.
I doubt that either will come to pass.
Charlie Gard won't be forgotten but I agree with what you say.
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https://www.theguardian.com/commentisfree/2017/jul/30/thank-you-doctors-and-nurses-who-cared-for-our-daughter
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https://www.theguardian.com/commentisfree/2017/jul/30/thank-you-doctors-and-nurses-who-cared-for-our-daughter
Heartbreaking and uplifting: brought a tear to my eye.
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Heartbreaking and uplifting: brought a tear to my eye.
Yes. Written from the heart.
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Galloway, prat as ever
http://www.westmonster.com/galloway-we-should-feel-ashamed-over-charlie-gard-treatment/#.WX5KKTYp5zo.twitter
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Galloway, prat as ever
http://www.westmonster.com/galloway-we-should-feel-ashamed-over-charlie-gard-treatment/#.WX5KKTYp5zo.twitter
Galloway is a bloody disgrace.
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Galloway is a bloody disgrace.
Was he ever anything else?