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Charlie Gard- State decides or parents?

Cliff

Distinguished Member
Tragic situation. He is being kept alive at Great Ormond Street. The UK doctors want to switch off the machines so he dies. This has been upheld by British courts. The parents don't have any say? They can't take the own son back home to die.
Let's put aside the cost argument. Also let's put aside the 'sensible' decision that we, as a 3rd party can say coldly, he has no hope, let's switch off the machines, its better for all. They have raised 1.4 million pounds and want to take him to America for treatment. It will probably be fruitless but is that the decision for the state?

It is the parents child! There is a bond. Surely they should have the choice what to do. Why does the state take ownership? The parents will suffer the grief.
 

domtheone

Distinguished Member
In general, the state has too much power/authority over us already so, If they've raised the cash and want to go, they should be able to go.

I'm generally in favour of euthanasia, letting the family have the final say (with guidance) on etc etc.
 

Jezza99

Banned
It's a difficult one. I think the courts are saying that taking him the the States will only extend his suffering, and therefore it is in the best interests of the child not to go.

I can understand that reasoning. I don't get not being allowed to take him home though, that seems a bit strong.
 

Iain42

Well-known Member
Seems that in death, as well as life, the state interferes too much.

Yes, it is correct that the doctors and courts make their decision. However it is wrong that the state can prevent the American option being pursued, even though the chances of success are probably small.

As long as the child doesn't suffer, at least then the parents will know that they tried everything. Why take that away from them?
 

IronGiant

Moderator
As long as the child doesn't suffer,
That is the crux though, the doctors think he is suffering unnecessarily as there is nothing further to be done and that taking him to America will prolong that suffering.

So in essence, strip away the medical condition and the State is making this an issue of child cruelty.

I'm not taking sides, i think the issues are too complex to get involved based on the small amount of information we have from the media.
 

Stuey1

Well-known Member
In general, the state has too much power/authority over us already so, If they've raised the cash and want to go, they should be able to go.

I agree with this, it's not too long ago since a child was taken from a hospital so a family could get them treated and they were arrested. I believe that child was eventually declared cancer free (if the state had their way this would likely have been very different), this case may be different as I haven't read into it much but if the family think there is a chance of the treatment working (and presumably doctors in the US also do), and it can be funded I think they should be allowed a chance to save their child.

The "experts" aren't always right
 
There are only 16 people on planet earth with this disease. It's not like cancer or Alzheimer's where there's an endless supply of test subjects to experiment on. It's vital he goes not only for the small hope he has, but also for medical advancement. If we keep letting these folks die without experimenting on them then we'll never find a prevention or cure.
 

IronGiant

Moderator
I thought parallels would probably be drawn, as on the face of it the two cases are similar. All I would say is that I have no doubt Charlie's doctors are painfully aware of the precedent and that they are in the limelight. It would be very easy to just say "let him go", yet they are not.
 
I agree with this, it's not too long ago since a child was taken from a hospital so a family could get them treated and they were arrested. I believe that child was eventually declared cancer free (if the state had their way this would likely have been very different), this case may be different as I haven't read into it much but if the family think there is a chance of the treatment working (and presumably doctors in the US also do), and it can be funded I think they should be allowed a chance to save their child.

The "experts" aren't always right


I agree with that Asher someone's case where his parents kidnapped him and took for experimental treatment. His doctors gave him weeks to live and he's still alive now after experimental treatment. Those dr who said he was doomed are also still adamant that going for the treatment was still the wrong choice :facepalm: if I had the power, I strike those drs of the medical register
 

IronGiant

Moderator
There are only 16 people on planet earth with this disease. It's not like cancer or Alzheimer's where there's an endless supply of test subjects to experiment on. It's vital he goes not only for the small hope he has, but also for medical advancement. If we keep letting these folks die without experimenting on them then we'll never find a prevention or cure.
With all due respect, I don't think you are medically qualified enough to make that statement.
 

Cliff

Distinguished Member
(
I agree with that Asher someone's case where his parents kidnapped him and took for experimental treatment. His doctors gave him weeks to live and he's still alive now after experimental treatment. Those dr who said he was doomed are also still adamant that going for the treatment was still the wrong choice :facepalm: if I had the power, I strike those drs of the medical register
Actually, the report on that said the Doctors and Social services did everything right- even the international arrest warrant and incarceration:eek:.

Surprised they are not in line for an MBE;)
 

Stuey1

Well-known Member
I thought parallels would probably be drawn, as on the face of it the two cases are similar. All I would say is that I have no doubt Charlie's doctors are painfully aware of the precedent and that they are in the limelight. It would be very easy to just say "let him go", yet they are not.

The parallels are pretty slim having just read what it is they are fighting, but I still don't like the idea of a court/judge deciding that someone can't go and get treatment somewhere else if the NHS feels there is nothing they can do for them.

It may fail, it may cause some unnecessary suffering but without even trying it doesn't have any chance for the ultimate aim of him to keep his life. IMO it should be his parents decision as to whether the treatment has a chance and they should be able to decide when it becomes selfish to keep him alive.

*Edit - the medical advancement point is also IMO valid
 

Cliff

Distinguished Member
the State is making this an issue of child cruelty
As they usually do...

The child is sick and suffering. We shoot horses. Humans, we try everything. But the real issue for me is that the child belongs to the parents not the state (although I get the feeling this has changed) . Therefore the parents- providing it is not unreasonable - should have the final say.
 

IronGiant

Moderator
*Edit - the medical advancement point is also IMO valid

So long as you realise what is being proposed. Charlie's brain isn't just damaged, it never developed properly. This treatment might help if there was something there to mend.
It's likely that this is a wonderful opportunity to advance the treatment of mitochondrial diseases, but the chances it will help Charlie are tiny. Charlie's parents should be made aware that they are most likely donating Charlie's living body to medical science experimental research, not for a medical treatment :(
Now, they may be prepared to do that, but I think they should realise their reasons for doing this are most likely for the benefit of others, not their small boy. Of course, I could be wrong, new brain tissue might grow and develop into a working brain, but the odds are very much against it.
On balance I would let them go, but only if they realise what the likely outcome is.
 

Unlucky Alf

Well-known Member
The parents should no have the final say.

They're understandably not being rational about this, and the court has to decide what's in Charlie's best interest, not theirs. He's blind, deaf, brain damaged, and will never able to survive off a ventilator. Doctors in Barcelona and even the American doctor who offered to treat Charlie have said that the proposed treatment is virtually futile. It's not been tried on anyone with his particular illness or even on mice, let alone people. Even if it did work, the best case is that he doesn't get any worse. He'll never talk, walk or see.
And the legal basis for courts making medical decisions rather than the parents is quite well established if it's decided that what the parents want is not in the child's best interests, eg Jehovah's Witness parents refusing blood transfers for their children.

Finally, I've been following the case and find the behaviour of the parents/family pretty distasteful. They've been whipping up the 'Charlie's Army' group on Facebook with the claims that GOSH is denying them justice and even that they're little better than murderers (see the pics of their protest banners at Buckingham Palace, which is supported and organised by the relatives), and of course it's now been latched onto by religious groups in the USA.
 

IronGiant

Moderator
even the American doctor who offered to treat Charlie have said that the proposed treatment is virtually futile. It's not been tried on anyone with his particular illness
I believe the treatment proposed is nucleoside therapy which is used in one form of MtDNA Depletion, one caused by a lack of nucleotides, the building blocks of DNA. From the little I can glean from the media reports I don't think this is cause of Charlie's depletion. If anyone finds out what gene is disrupted in this family I'd be very interested.
 

Cliff

Distinguished Member
,
The parents should not have the final say.

They're understandably not being rational about this, and the court has to decide what's in Charlie's best interest, not theirs. He's blind, deaf, brain damaged, and will never able to survive off a ventilator..

I actually know parents who have a seriously disabled child and he can't speak, eat through the mouth, no muscle control and just about everything else has to be done by a carer. Now I often say to my wife, 'this is crazy'- the NHS is keeping him alive but he can't be happy (although we don't really know). The parents, of course want him alive. But it has affected their lives seriously as well.
'They should have let him die at birth'

However, I am a 3rd party and have no emotional connection. I am just looking at it in a matter of fact way. If it was my child I would no doubt think differently.

I don't buy the child cruelty angle. - that's just Social Services's weasel words- and it should not be their call.

In this case, the NHS will not be paying, and I believe it is the parents right to try. I don't think it will work but they will have the comfort of knowing they did everything and may help with the grieving.
I don't believe it is the duty of the state to say who lives and who dies- especially when they won't be paying.
 

bjd

Distinguished Member
Surely the time he was being kept alive while court cases were being fought would have been better spent letting him be taken yo the US to try whatever experimental therapy was available? The money was raised and his parents, no matter what the outcome, would at least have felt they had done everything they could to help him.
 

simonblue

Distinguished Member
Its not the state but his Doctors,and as a doctor you have a duty of care for your patient,and that must come first.
I can understand the parents point of view,but if the Doctors think their is no hope,and it very much seem it in this case,they must at some point come to an decision about the poor baby care,and quality of life.
 

Unlucky Alf

Well-known Member
I actually know parents who have a seriously disabled child and he can't speak, eat through the mouth, no muscle control and just about everything else has to be done by a carer. Now I often say to my wife, 'this is crazy'- the NHS is keeping him alive but he can't be happy (although we don't really know). The parents, of course want him alive. But it has affected their lives seriously as well.
'They should have let him die at birth'

However, I am a 3rd party and have no emotional connection. I am just looking at it in a matter of fact way. If it was my child I would no doubt think differently.

I don't buy the child cruelty angle. - that's just Social Services's weasel words- and it should not be their call.

In this case, the NHS will not be paying, and I believe it is the parents right to try. I don't think it will work but they will have the comfort of knowing they did everything and may help with the grieving.
I don't believe it is the duty of the state to say who lives and who dies- especially when they won't be paying.

It's not the social services saying this, it's world class specialist doctors. Not just ones from GOSH either.

And again, you're putting what the parents want ahead of what has been decided as best for Charlie. They're not in a position to be rational about it.

This is also not about money. The parents have raised enough for him to be treated, and GOSH did consider early this year whether the treatment would be helpful before Charlie deteriorated drastically.

EDIT:
It's also debatable whether letting the parents clutch at any straw, whether it's American treatment, Trump/the pope/Italian hospitals adding their tuppence worth, etc, is doing them any good
 
Last edited:

Enki

Banned
,
In this case, the NHS will not be paying, and I believe it is the parents right to try. I don't think it will work but they will have the comfort of knowing they did everything and may help with the grieving.
I don't believe it is the duty of the state to say who lives and who dies- especially when they won't be paying.

If they had been entirely self funding throughout their sons treatment I can see your point, however, they have not they engaged fully and consented to NHS treatment. It's far to easy to condemn the NHS/state, however, there will be expert medical professionals behind the decision who have worked closely with Charlie and his parents,it would not have been an easy decision for them to challenge the parents, a very difficult situation.

Trumps intervention has not been helpful.
 

Cliff

Distinguished Member
Its not the state but his Doctors,and as a doctor you have a duty of care for your patient,and that must come first.
And in your mind, the doctors duty of care includes turning off the life support system?

Unfortunately it is the state now. The doctors advise was supported in court. So if the parents go against this .... well you know the consequences... :(
 

simonblue

Distinguished Member
And in your mind, the doctors duty of care includes turning off the life support system?

Unfortunately it is the state now. The doctors advise was supported in court. So if the parents go against this .... well you know the consequences... :(

If that duty of care of the doctors believe that the best interest of this case,is switching of the life support system,then yes.
Its was the parents who brought in the state,not the doctors,they will have been advised at some point that they made lose the case.
Its very sad all round,but it seem most of the medical opinion on which the courts decided was that, switching of the life support would in this case be in the best interest of this poor baby.
 

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