In the context of Charlie, it was interesting to watch this where the parents have a rather different perspective (and Rose appears to have a slightly higher quality of life than Charlie)
http://www.bbc.co.uk/news/av/health-40582032/mother-s-plea-for-daughter-s-right-to-die
http://www.bbc.co.uk/news/uk-england-40708343
Sad in a way, but my overwhelming feeling is thank goodness for that.
The mother looks very unwell poor woman. I hope both parents get the care and support that they need to cope with a heart breaking situation. The American specialist is just short of being a quack.
deeply sad situation and heart goes out to all involved, on both the personal and the care side of things all of whom I'm sure feel thay have Charile's best interests at heart.
Apologies if not the time but heartbreaking as it is I find these medical ethics issues fascinating. All the time this has been going on, they have referred to it as 'experimental' medical treatments that 'might' help him; when is it OK to experiment with a little boy's life? Where do we get to if we can't experiment - and in cases like this who decides?
OK if you're an adult and a doctor offers you an experimental drug or a trial procedure you can make informed consent, but for an early years illness? And tough as it is (and why I decided to post this even though I'm not sure how it will be received) - while the grief and stress it has had on the parents is evident, should the parents have a say at all? Are they too close to be objective, and should it be left to medical experts, judges and lawyers?
Every day i am just so grateful I have two healthy daughters. I don't know how I'd cope, with a case like this, or a Bradley Lowery.
[quote=theotherjonv ]And tough as it is (and why I decided to post this even though I'm not sure how it will be received) - while the grief and stress it has had on the parents is evident, should the parents have a say at all?
I think they should - legally and morally parents have the right to make lots of decisions affecting their children's lives - but it shouldn't be an overriding one. Quite how you balance that I'm not sure.
theotherjonv » And tough as it is (and why I decided to post this even though I'm not sure how it will be received) - while the grief and stress it has had on the parents is evident, should the parents have a say at all?
I think they should - legally and morally parents have the right to make lots of decisions affecting their children's lives - but it shouldn't be an overriding one. Quite how you balance that I'm not sure.
Desperately sad, and my heart breaks for the parents, who've done everything they possibly could for their baby, and under the circumstances I think I would as well, but with the proviso that I do actually recognise that sometimes the help that's offered is no better than wearing a copper bangle or waving crystals around.
One thing that made me angry tonight watching the news was a bunch of people shouting "justice for Charlie", who I don't think were helping matters one little bit, well-meaning, I'm sure, but just distracting from what was going on.
Others, I'm sure, may have a different opinion.
Sad, but at least it is now over. I really hope the parents don't now sue, as they seem to believe it is a delay in treatment (rather than the treatment not being an effective or ethical one) that led to Charlie's decline.
The statement from GOSH is utterly professional and utterly damning. See http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017
Sad, but key, points for me:
At the first hearing in Charlie’s case in March, GOSH’s position was that every day
that passed was a day that was not in his best interests. That remains its view of his
welfare. Even now, Charlie shows physical responses to stressors that some of those
treating him interpret as pain and when two international experts assessed him last
week, they believed that they elicited a pain response. In GOSH’s view there has been
no real change in Charlie’s responsiveness since January. Its fear that his continued
existence has been painful to him has been compounded by the Judge’s finding, in
April, that since his brain became affected by RRM2B, Charlie’s has been an existence
devoid of all benefit and pleasure. If Charlie has had a relationship with the world
around him since his best interests were determined, it has been one of suffering.
In the months ahead, all at GOSH will be giving careful thought to what they can learn
from this bruising court case that might enrich the care it provides to its most vulnerable
patients and families. It is hoped that those who, like the Professor, have provided the
opinions that have so sustained Charlie’s parents, their hopes and thus this protracted
litigation with its many consequences, will also find much upon which to reflect.
[quote=CountZero ]One thing that made me angry tonight watching the news was a bunch of people shouting "justice for Charlie", who I don't think were helping matters one little bit, well-meaning, I'm sure, but just distracting from what was going on.
I agree - I doubt any of them have anything like a proper understanding of the situation. Not quite as bad as those sending threatening messages to the hospital staff or Charlie's parents, but from the same stock as them.
I can't have anything but sympathy for the parents though, as much as I might disagree with some of the decisions they've made.
Having read that statement, some quite damning comments if you read between the lines:
It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. 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) or even read the judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.
The hospital does not treat its most vulnerable children simply because it can and on no account does it treat them purely because novel treatment furthers GOSH’s research.
It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect.
Wow, that is quite damning. Hopefully there will be a lot of soul searching amongst the press and shame amongst the death threat morons. I have my doubts.
Either way, I hope the family have some closure and some peace in this awful situation.
I heard the father's statement in full on the radio on the way home. I'm sure like many, I'm a bit conflicted whenever I think about situations like this. I can swing one way and then the other. But cripes, I did feel a bit emotional listening to the guy. I remember spending a couple of weeks in Bristol Children's Hospital when our fella was ill between 7 and 9 weeks. I met some people in there whose kids had no realistic chance at a quality life beyond a few years. It was bloody heartbreaking listening to some of their stories. 🙁
I have great sympathy for the parents having had a child who was doomed from the moment he was born. That's just a terrible thing to happen.
I have less sympathy for the way they have conducted themselves in the court case: I understand their desperatiion, but that doesn't mean that you can just ignore reality & I don't thnk what they have done has been in the best interest of their child.. As for their supporters:
Outside court, Charlie's Army campaigners reacted angrily and chanted, "shame on you judge" and "shame on GOSH".Falling to the ground, one female supporter said: "He had a chance and you took it away."
Sums it up really.
It's people investing so much of their soul into the latest tribal battle happening on twitter. What a world we live in.
[quote=imnotverygood ]I have less sympathy for the way they have conducted themselves in the court case: I understand their desperatiion, but that doesn't mean that you can just ignore reality & I don't thnk what they have done has been in the best interest of their child.
I'm going to give them a pass on that too - they clearly thought their actions were in his best interests. Clouded by emotion to think that maybe, but when you've got somebody who is supposedly an expert (or even the expert) in the field whispering to them can you blame them? The Professor doesn't get a pass.
The statement from GOSH appears to refute a lot of what they're saying, but I expect they will always believe that. Hopefully Charlie's Army (who will also always believe all of that) will fade away and find something else to get upset about.
like the Professor, have provided the
opinions that have so sustained Charlie’s parents, their hopes and thus this protracted
litigation with its many consequences, will also find much upon which to reflect.
Doubt it. Similar ilk will now be dripping poison into the parents ear about suing.
I'm not sure it was a genuine hope, so much as part of the take down, hence why I linked it with the other statements.
An example of how the legal system gives the opportunity for incredibly difficult decisions to be made fairly.
aracer - Member
imnotverygood » I have less sympathy for the way they have conducted themselves in the court case: I understand their desperatiion, but that doesn't mean that you can just ignore reality & I don't thnk what they have done has been in the best interest of their child.
I'm going to give them a pass on that too - they clearly thought their actions were in his best interests. Clouded by emotion to think that maybe, but when you've got somebody who is supposedly an expert (or even the expert) in the field whispering to them can you blame them? The Professor doesn't get a pass.
Quite. One has to question the value and ethics of shoving a camera/microphone in the face of a grieving parent. The expert opinions of the medics at GOSH should inform the choices here more than those of some clearly very distressed people. We seem to struggle with the concept that all opinions are valid, but not equally valid.
I think that, in time, the parents will be able to be able to see this whole debacle a bit more clearly - and at that point, sue the arse off "the professor"
This Professor Hirano sounds like a right bastard.
Like I said above molgrips a quack. The little boy has been without hope since the seizure last December, the muscle wastage is a mis-direct.
Whole tragic case lies with the false hope provided by dubious science professor in the US who is financially connected with the so called "treatment" that is unproven (and who is to say the few kids who's been claimed to have helped, wouldn't have made a recovery anyway, although it looks like some are still in a bad way, just not dead yet).
Apparently some stuff he wanted to try hasn't even been tested on mice let alone humans. GOSH had no choice but to refuse this as it comes totally under the banner of unethical and immoral in the medical world. In America it's probably more common because anyone waving a few million about will get someone happy to take the money and make promises.
All that would have happened is treatment would occur while stating that it's experimental and slim chance. "Oh, sorry, your kid didn't survive. Thanks for the £million though."
[i]I think they should - legally and morally parents have the right to make lots of decisions affecting their children's lives - but it shouldn't be an overriding one. Quite how you balance that I'm not sure[/i]
That's what the courts were doing - their role was to represent the child and see that decisions were in his best interest, informed by experts and listening to arguments on both sides. Once it gets to that point, the doctors aren't making decisions the courts are.
Another reason why it's damaging nonsense to say that any aspect of this case is somehow about the health system.
I don't think I've seen a thread on here so full of vigorous consensus...
i wonder if could someone help me with this, ideally using non emotive words.
If the kid was over 18 (ie an adult) would the court be able to stop the parents taking him to the US?
thanks in advance.
I assume you mean if the over 18 was not able to speak for themselvesYes I think
Firstly at over 18 the parents have no rights to control what is now an adult and the person would be a "vulnerable adult" could be then placed under a guardianship order if social work thought that it might not be in their best interests and the court would then make a decision based on the evidence. The guardian could be a parent but equally could be a court appointee
If the kid was over 18 (ie an adult) would the court be able to stop the parents taking him to the US?
If an adult wants to travel abroad to Dignitas, the law would have a strong view on it.
If an adult wants to submit himself to quackery, they are welcome to make a tit of themselves.
If someone wants to experiment on a desperately ill baby; there may be a responsible person who says "hold on a moment"
The kid in question was being kept alive by medical means. The parents had to have the assent of the doctors to travel. At which point they will have an opinion.
Rightly, it would seem.
right. so which point of law overides the parents wishes here? (sorry if i missed it earlier) presumably the doctors have a duty of care, how does this overide the parents wishes? is it only in cases such as these, or could they even stop you going to france to get a collar bone pinned, for example.
Whole tragic case lies with the false hope provided by dubious science professor in the US who is financially connected with the so called "treatment" that is unproven (and who is to say the few kids who's been claimed to have helped, wouldn't have made a recovery anyway, although it looks like some are still in a bad way, just not dead yet).
Having read some of the more expert commentary that has been well distilled for the layman (i.e. not social media), the treatment is somewhat effective for other types of mitochondrial disease. Charlie has a different type that the treatment is not suited for.
Moreover, in the UK we do not allow patients to have completely untested treatments used on them. As GOSH say:
The hospital does not treat its most vulnerable children simply because it can and on no account does it treat them purely because novel treatment furthers GOSH’s research.
The US has a "last resort" rule (can't remember the proper name) that would allow experimental treatment if there was nothing else but the dodgy Prof didn't at any point apply for FDA approval to get ready to give it to Charlie in the US so WTF was he planning on doing?
I don't think it's a case of jackbooting over the parents wishes; it's more managing their expectations so the best is done for the kid at all times.
When you have no hope, a bit of positive news must seem brilliant. I think the US doctor sold them a dream he had no way of delivering. The GOSH staff could see that.
The parents couldn't, through their desperation.
right. so which point of law overides the parents wishes here?
Medical treatment is given in line with the needs of the patient. Parental input is secondary and relies on an assumption that the parents are acting in the best interests of the child. Where doctors cease to believe that is the case, they go to court to get an objective determination of the child's best interests.
When a child is competent enough to decide their own best interests, the parent's views are also sidelined.
BMA briefing note at: https://www.bma.org.uk/advice/employment/ethics/children-and-young-people/parental-responsibility
the doctors have a duty of care,
To the child, and only to the child. If exercising that duty brings them into conflict with the parents then you end up where GOSH have been.
could they even stop you going to france to get a collar bone pinned,
If a court case is brought and concludes that it is against the best interests of the child, then yes. For less critical stuff, it mostly seems to happen when separated parents disagree.
porter_jamie - Memberright. so which point of law overides the parents wishes here? (sorry if i missed it earlier) presumably the doctors have a duty of care, how does this overide the parents wishes? is it only in cases such as these, or could they even stop you going to france to get a collar bone pinned, for example.
the doctors duty is toward the patient - not the parents. If the doctors think there may be an issue in that the parents are not acting in the childs best interests they go to court to get the court to rule. The court will then look at the evidence and make a decision.
this is only in extreme cases like this - not for things where its a simple difference of choice of treatment
The US Right seem to have jumped on this too. Highlights everything wrong with the liberal left, socialism, state health-care and the EU Death Panel apparently.
http://www.breitbart.com/london/2017/07/24/breaking-attorney-charlie-gards-parents-withdraws-legal-bid-treat-infant/
Yep the US right needs to keep telling them how good their pay for what you can afford system is regardless of outcomes.
Speaking in court, the baby’s mother claimed her son was “not brain dead” and could have lived a normal life if he had been released for treatment abroad, which was prevented by doctors, lawyers and bureaucrats.
I can see why her and the doctors disagreed, then.
The US Right seem to have jumped on this too
They jumped on this quite a while back, not just today.
The problem is the medical evidence pointed in only one direction - the baby was badly brain damaged, blind and suffering pain.
Statement from CG's parents:-
Tragically, having had Charlie’s medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy
If they truly believe this and this is not a statement written for them by the american doctor that will be a lot of anger to be carrying around. If you believe GOSH, and I have no reason not to, this was hope based on thin air. It is almost worse than the lad receiving useless treatment that failed. You only hope that in years to come they will see the offer of treatment for the false hope GOSH thinks it was.
As the parents they will be stuck between a lifetime of anger at the GOSH for preventing their son getting life saving treatment or huge guilt that their actions made their little lad suffer when they read :-
Statement from GOSH:_
Its fear that his continued existence has been painful to him has been compounded by the Judge’s finding, in April, that since his brain became affected by RRM2B, Charlie’s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.
What a horrible situation to be in.
The problem is the medical evidence pointed in only one direction - the baby was badly brain damaged, blind and suffering pain.
Hope vs science. Tragic.
And Charlie's Army, together the the dodgy Prof, only served to create more hope where there really was none. They should be ashamed.
he would have had the potential
to me is a nasty, weaselly statement presumably written by the doctor or lawyers
What potential? 1 in 10? 1 in a million?
Impossible to dispute, even the sickest people sometimes get better and it's impossible to say why.
[quote=theotherjonv ]Impossible to dispute, even the sickest people sometimes get better and it's impossible to say why.
Not ones with severe brain damage. Hence it is a false statement, unless by "sooner" they mean before the court case even started. I am of course relying here on the evidence of GOSH that he was already severely brain damaged in December, but then I don't believe anybody has refuted that with any real evidence.
TBH I didn't understand how this case got so much airtime compared to other things going on in the world, I have assumed the parents have money and this is why it keeps circulating, because whilst it is tragic and saddening for all involved, I dont see how its a national issue, although some of the comments from the parents seem to be made to insight a riot with their support crowd outside the court and via social media.
I was more shocked in the last few days to hear that staff of GOSH have been getting threats from the public and then reading the above statement:
Tragically, having had Charlie’s medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy
I really hope the parents can now take the time to mourn and reflect and I would hope eventually thank or apologise to the staff of GOSH.
Presumably their lawyers are still working for the publicity value?
http://www.bbc.co.uk/news/uk-england-london-40716292
It does seem somewhat crazy to go to the courts over this rather than try and work with the people you need to facilitate things.
Home ventilator care is very expensive and difficult and slow to arrange. Its also not usually the hospitals responsibility. You need 24 / 7 nurse cover from appropriately trained nurses - they are just not available at the drop of a hat.
Good god, just let the poor wee guy die won't you........
It does seem somewhat crazy to go to the courts over this rather than try and work with the people you need to facilitate things.
There seems to have been a breakdown in trust between the parents and Great Ormond St, very unfortunate but probably a likely outcome after a protracted legal dispute
They accused Great Ormond Street Hospital (GOSH) of putting "obstacles" in the way of Charlie's return home.
However, they said Charlie's parents had not wished to use the services of a mediator and had proposed no clear plan.She said the hospital wanted to fulfil Charlie's parents' "last desire" but that providing intensive care to Charlie outside a hospital setting was not simple.
The judge said: "If going home can be achieved within reason then I would like to achieve that for them."
GOSH said that as far as it is aware, invasive ventilation is only provided in a hospital setting.
"It requires air to be forced into the lungs. For reasons that are obvious, that process and the correct, safe positioning of the tube have to be monitored by an ITU trained nurse at all times, with an ITU doctor on call and close at hand.
"Those resources cannot be provided by GOSH to Charlie at his parents' home.
"GOSH is aware that there are other practical problems one being that the ventilator does not fit through the front door."
They do sound like pretty reasonable obstacles. In the nicest possible way I can't imagine GOSH don't want shot of the family as much as the family want to get away from the hospital. Damn the doctors and their desire to fulfil the best interests of the child.
This is not like a terminal but aware and cogent patient going home to be at peace and comfortable for their last days. Sadly this is is only for the well being of the parents as the child will be unaware where he dies. It just needs to be done as painlessly as possible. Not saying that their needs are not important but they can't be confused with the needs of the patient.
