8den
No I'm pretty sure that was 8ball...
Really fucking odd that Mad Mel is bang on about this. That doctor from America who gave the parents false hope should be disbarred and then tarred and feathered.
Charlie Gard RIP ..
- Thread starter weltweit
- Start date
Really fucking odd that Mad Mel is bang on about this. That doctor from America who gave the parents false hope should be disbarred and then tarred and feathered.
8den
No I'm pretty sure that was 8ball...
The America argument is that the state are deciding that the child must die, which is socialised medicine, and the parents should have the right to take care of the child, and had the parents been in charge they could have gotten the medical treatment that supposedly would have saved in. It ignores the fact that in America the insurance company would have cut off the parents months ago, as theres no way the treatment would have been covered by their policy.
It's infuriating watching the case being used to put forward a political agenda that would have killed the kid anyway.
SheilaNaGig
Break requested
Every large hospital (here and in the US) has dedicated ethics committees whose daily task it is to weigh up the complexities in individual cases.
Here in the UK the child (or anyone who is in some regard unable to make decisions for themself) is considered to be individual and separate rather than attached in some way to the parents or guardians. In the US the parent or guardian is assumed to be somehow connected to the needs and rights of the individual in a way that can override the patient. What the parent or guardian wants or believes is a higher authority than the needs of the patient.
In some cases, this is obviously going to be a better option. But not universally. There's so much scope for wrongheadedness and emotional override when the parents/guardians have the final say.
I think I prefer it to be a point of principle that the patient is always considered separately to the parent/guardian. * But then, I live in a country where we have generally excellent healthcare that's not governed by financial considerations at point of use.
Trying to judge this case from the perspective of the American model can only end up in a series of non sequiturs.
* I'm not a parent. My view might be different if I were.
Here in the UK the child (or anyone who is in some regard unable to make decisions for themself) is considered to be individual and separate rather than attached in some way to the parents or guardians. In the US the parent or guardian is assumed to be somehow connected to the needs and rights of the individual in a way that can override the patient. What the parent or guardian wants or believes is a higher authority than the needs of the patient.
In some cases, this is obviously going to be a better option. But not universally. There's so much scope for wrongheadedness and emotional override when the parents/guardians have the final say.
I think I prefer it to be a point of principle that the patient is always considered separately to the parent/guardian. * But then, I live in a country where we have generally excellent healthcare that's not governed by financial considerations at point of use.
Trying to judge this case from the perspective of the American model can only end up in a series of non sequiturs.
* I'm not a parent. My view might be different if I were.
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8den
No I'm pretty sure that was 8ball...
It happens a fair bit, enough that there are several studies into the ethics of things like teenage Jehovah's witnesses refusing blood transfusions. (which have lead to court cases and deaths on both sides of the Atlantic.)
Medical emergencies in children of orthodox Jehovah’s Witness families: Three recent legal cases, ethical issues and proposals for management
SheilaNaGig
Break requested
And other really complex and heartbreaking cases too, most of which we never hear about. Like the anorexic teenager who refused all intervention and wanted to allow her anorexia to kill her when everyone around her understood that that skewed thinking was the effects of the illness. Or the woman who was so devastatingly depressed that when her suicide attempt failed and put her into a persistent vegetative state her husband wanted her to be allowed to die rather than treated.
Almost impossible to make clear choices in cases like this.
In the US, the family would have the last word regardless of anything the patient might want. And then, as 8den says, everything eventually gets chewed up by the insurance people anyway.
Thora
Differently Ethical
I'm not sure about any particular moment in court, but I understand the main things she disagreed with the hospital on was whether Charlie had brain damage (she believed not), whether he was in any pain (she believed not, doctors said possible/probable) and whether Charlie responded to the outside world (parents believed he did, medical team said he hadn't been responsive for months).
SheilaNaGig
Break requested
Thanks Thora.
Yes. It seems to me that the parents were saying he was still responsive and interacting while the medical team were saying that was impossible.
So sad. Just heart wrenching.
trashpony
Hag
In the interview I heard with Connie a couple of weeks ago, she said that Charlie enjoyed watching things on the ipad. Charlie was blind and deaf and unresponsive. I leave you to draw your own conclusions.
And on the guilt issue - if you have unwittingly passed on a genetic condition to your children, of course you feel guilty! I have seen at first hand how crushing it is for parents to realise they have passed on a life-limiting genetic illness to their children (one of my sisters has cystic fibrosis and me and my other sister are both carriers). And there is no outlet for that guilt - except for focusing on your sick child.
And on the guilt issue - if you have unwittingly passed on a genetic condition to your children, of course you feel guilty! I have seen at first hand how crushing it is for parents to realise they have passed on a life-limiting genetic illness to their children (one of my sisters has cystic fibrosis and me and my other sister are both carriers). And there is no outlet for that guilt - except for focusing on your sick child.
not-bono-ever
meh
Odd now that he has passed, over the past few weeks, this case has come up more than a few times with workmates and friends- virtually to a man ( woman) , people seemed to be obliged to not want to talk openly about how they felt about it, without looking over their shoulder. hard to explain, but it was similar( broadly) to what was going on during the Diana period.Not sure if anyone else felt this ?
SheilaNaGig
Break requested
Maybe because the details were both obscure and so so personal?
I don't know what you mean by comparing it to the Diana thing.
I know I've refrained from even thinking it through til I had more of a handle on the facts. I just felt that there was so much that was unknown and unseen in the story, and also that it was so raw and wretched while the child was still alive. Those people yelling outside the hospital somehow put a stop on my own ability to form an opinion. That kind of certainty makes me really uncomfortable.
I don't know what you mean by comparing it to the Diana thing.
I know I've refrained from even thinking it through til I had more of a handle on the facts. I just felt that there was so much that was unknown and unseen in the story, and also that it was so raw and wretched while the child was still alive. Those people yelling outside the hospital somehow put a stop on my own ability to form an opinion. That kind of certainty makes me really uncomfortable.
planetgeli
There's no future in England's dreaming
Faced with a relentless mass media pouring out emotive pictures of a 'beautiful Charlie' and a pro-life lobby in overdrive it's been quite difficult to voice the opinion (however much backed up by medical opinion) that the parents were misguided and the most humane thing to do would be to switch off the machines instead of switching on the lawyers.
And yes I'm a parent.
And yes I'm a parent.
Grandma Death
Reconfiguring & Reconstructing
My brother was killed in a motorcycle accident-he was 36 at the time. When we were told he had brain stem death and there was nothing else they could do-it was still an incredibly difficult thing to even digest. They asked us collectively whether we were happy for him to go to surgery to take out some of his organs for donation then switch off the machine that was keeping him alive. He was a grown adult. Such a decision wouldve been even harder when its your own baby-because you are ultimately responsible for what is a defenseless baby. As a parent myself I would hold to anything-whether realistic hope or not. I understand why they held on for so long-I would do the exact same thing. I dont blame them-infact I admire their determination.
weltweit
Well-Known Member
That must have been awful Grandma Death
Grandma Death
Reconfiguring & Reconstructing
Yeah it was. My sister in law was too distraught to take the three kids in to say goodbye. So I did it. Its a moment that will be with me for the rest of my life
NoXion
Craicy the Squirrel
I can't find any fault in the parents for holding out hope that they might be able to spend more time with their son. I do however think that Professor Hirano deserves professional censure at the very least for feeding them false hope when he had not even seen Charlie's medical notes, let alone examined him. The fact that the professor likely had a personal financial stake in performing a course of treatment only serves to compound his mendacity. It's my hope that effective procedures for detecting and eliminating genetically acquired diseases and infirmities become widely affordable, so that as many parents as possible are able to have children without any risk of suffering through similarly nightmarish trials as the parents of Charlie Gard.
DJWrongspeed
radio eros
I've been mulling this case over recently, all the red top out cry doesn't help at all and skews the case, anyway some thoughts
1) GOST is a very well funded hospital receiving large amounts of public charitable & NHS funds. If your child is there you're very lucky.
2) Does this case not exemplify society's abstraction from death i.e. people feel once life has started it must never ever end. I say this in a broad sense.
3) As the judge said , it should be dealt with by a local board of arbitration, let's exclude the supreme court from all this, what a waste of legal time all round.
1) GOST is a very well funded hospital receiving large amounts of public charitable & NHS funds. If your child is there you're very lucky.
2) Does this case not exemplify society's abstraction from death i.e. people feel once life has started it must never ever end. I say this in a broad sense.
3) As the judge said , it should be dealt with by a local board of arbitration, let's exclude the supreme court from all this, what a waste of legal time all round.
Grandma Death
Reconfiguring & Reconstructing
I dont think parents whose kids end up in GOSH necessarily feel lucky. Thankful maybe
NoXion
Craicy the Squirrel
Absolutely not, people have been wanting to cheat death for as long as we have known that death is a thing. And why not? Most deaths aren't because the person dying actually wants to end their life, but are due to circumstances beyond their control. I think that people should decide when people die, rather than having blind and uncaring nature make that decision for them.
SpookyFrank
A cheap source of teeth for aquarium gravel
The level of barracking from the tabloids on this issue has been represhensible even by their own standards. When people are faced with such a deluge of spittle-flecked rhetoric they might naturally become reluctant to express any slightly different opinion, no matter how reasonable or well-informed it might be.
I've avoided the tabloid coverage like the plague but I couldn't avoid spotting one paper the other day with the headline 'manslaughter' and a picture of the poor child, who as a human being and a departed one at that deserves better than to be used to grind other people's axes. And all this bile, all this cast-iron certainty from people with no personal insight and no medical knowledge, it's all manufactured. Created to serve an agenda. Absolutely breathtaking levels of cynicism from all concerned.
DJWrongspeed
radio eros
interesting , I discussed with a work colleague from a Catholic background, (not sure that's particularly relevant) and they were more in favour with the parents making the decision. This was b4 all the tabloid madness though.
ricbake
working out how
A lot of the tabloid presentation of his parents position has been with the money grubbing help of PR/journalist Alison Smith-Squire
Sell my story | About Alison Smith-Squire, Featureworld
Sell my story | About Alison Smith-Squire, Featureworld
Smoking kills
Well-Known Member
Seems to me that a family tragedy has been amplified into an international media sensation. Trump and the Pope get to have an opinion. May gets to offer condolences, despite her Twitter account being trolled by Charlie's Army, using language that would get normal people arrested.
GOSH have to deal with real threats to their staff and legal expense, but fuck it, it sells papers.
Meanwhile, more kids are dying in Yemen, the Med, London.
GOSH have to deal with real threats to their staff and legal expense, but fuck it, it sells papers.
Meanwhile, more kids are dying in Yemen, the Med, London.
When I worked at GOSH, parents gave consent for the involuntary feeding of their children but iirc there was an argument that using the Children Act rather than parental consent would allow the child to be angry with the clinicians rather than the parents, the thinking was it could serve a therapeutic function, and would free the parents up to be parents, the medical decisions made by the medics. To feed a young person that doesn't want to be fed can take up to 5 adults to hold them while a tube is inserted and then while the feed takes place...it's very traumatic for everyone involved.
Raheem
Well-Known Member
Not that it really undermines your general point, I think that headline was about Grenfell, just sharing the page with an obligatory photo of CG.
Raheem
Well-Known Member
I'm inclined to support this sentiment, although I don't feel I have the knowledge of what went on to make any moral judgement about the parents one way or the other.
But it's precisely because the attitude of parents might be understandable (and predictable) when their children are terminally ill that the best thing is not to allow them absolute sovereignty.
I understand why people take out payday loans, but it doesn't mean I think it's a good system.
bluescreen
tofu eating wokerati
In English law parental rights don't trump the welfare of the child and some people have enormous difficulty getting their heads round that.
I should think that in recognition of the kinds of difficulties parents face that they had a lot of support offered to help them think about Charlie that they weren't able to take up because they arrived at a position where they didn't trust the hospital. Parents aren't just left to get on with it in these circumstances, our systems are built around trying to keep parental responsibility with the parents wherever possible. This to me is one of the terrible things about this case, that by the campaign's encouragement of the parents mistrust of the professionals actually providing care, the parents have been denied the care for themselves that they so desperately need.
Winot
I wholeheartedley agree with your viewpoint
And what if the board are acting illegally? There has to be a court of last instance and in this county it's the Supreme Court.
bluescreen
tofu eating wokerati
I'm a parent. I'm pretty sure that I'd believe I knew better than anyone else whether my child was aware, responding, and so on. Being with the child practically 24/7 I'd notice tiny differences and responses which a busy medical team working shifts might not register. But aren't GOSH are totally aware of this, and respond to the parents' reports, treating parents as informed observers rather than deluded? At least, I hope so.
