The plight of Charlie Gard

mahamageehad

ohnonotgmail wrote: »

you dont think the state should step in to prevent parents from prolonging their childs suffering? And the doctors dont want to end the childs life. they want to withdraw life support and provide palliative care. it is not euthanasia.

My understanding is that withdrawing life support will end the child's life? In that respect is basically is euthanasia no? I have said that I think that the child should be allowed to die peacefully, I'm just wondering about the legal mechanics of this ruling and any potential knock-on effects.

alf66 wrote: »

There is a huge difference between euthanasia, and switching off a life support machine.

The baby cannot, and has never been able to, survive without the life support.

It still feels a tad slippy slope to me to.

Water John wrote: »

It would be highly unlikely the UK hospital would allow, experimental treatment.

So, would they be allowed to do this experimental treatment in a private home? Or due to the mechanical ventilation, is there no way of taking the child from the hospital alive so it's not actually a possibility? Seamus has mentioned a number of other barriers in his previous post so it seems that my initial point here is no longer valid in any case.

seamus wrote: »

Most countries disallow medical experimentation on unconsenting participants. I know that sounds cold, but an "untested miracle cure" on a child is exactly that - a medical experiment on a child.

Consider the magnitude of allowing that, even in isolated extreme cases.

It's not different. The state is not ending the child's life, simply refusing to allow suffering to be prolonged.

There would be substantial barriers in such a case. Notwithstanding the doctor not being licensed to practice in the UK, there are many hoops to jump through in order to get approval to use experimental treatments. Just because a treatment is permitted in the US, doesn't mean it's permitted in the UK (and vice-versa). And for experimental treatments, the criteria for using it on a patient are much stricter than for a proven treatments.

Don't get me wrong Seamus, in a case where a treatment hasn't even been tested on mice and doctors appear to have unanimously agreed that it won't be beneficial, it seems like the right call by the courts. However, regarding your point about patient consent, in this case the parents are the legal guardians and they are giving consent on behalf of the child. This type of consent is accepted in many other scenarios, I'd be curious as to why the parents are overruled in this specific case.

Given a scenario where a baby was suffering from cancer and the parents refused to allow the doctors to perform chemo or whatever treatment was needed in favour of aromatherapy, would the state step in there too?

captbarnacles

gctest50 wrote: »

You're trying to spread what looks like poor understanding as teh truuuuuuuuuuuuuuuth




Fine healthy looking mouse :

It has never been tested on Charlie Gard's condition and according to a doctor in US may not even cross the Blood Brain barrier.

Water John

Yes the state will act in the case of children. It seems to to rarely act, but can do, in the case of adults.
Some adults don't make wise choices. Steve Jobs would possibly be alive today, if had not opted solely for the alternative medicine route.

Guy:Incognito

[Deleted User] wrote: »

For me this calls in to question the ethics around the right to die and who gets to make that decision. I believe the parents should be the only people allowed make the decision in this case. It's not a matter for the courts. It must be heartbreaking for them. Unfortunately we sometimes need to look beyond our emotions and to the reality. If this little boy succeeds in receiving the treatment then yes his life maybe prolonged but what sort of a life will that be?

Parents are not doctors and will usually let their emotions take charge which can result in prolonging suffering. They can't be allowed to just inflict suffering on a child because they happen to have given birth to them. You'll find someone somewhere in the world that will tell you they can cure anything you've got, just by doing a bit of googling. Con men and charlatans will gladly take money of people .


Most people will say "don't let me end up like that , pull the plug" when talking about life in a vegetative state, but often when they are responsible for someone else, will see no issue leaving them like that or worse, prolonging it with intervention, just because they don't want the person to die.

The best interests of the patient is what should come first, regardless of who they are and in a lot of cases , the best thing for someone is to be let die .

osarusan

mahamageehad wrote: »

My understanding is that withdrawing life support will end the child's life? In that respect is basically is euthanasia no?

Euthanasia is not simply the withdrawal or withholding of life support, which happens quite a bit.

mahamageehad wrote: »

Given a scenario where a baby was suffering from cancer and the parents refused to allow the doctors to perform chemo or whatever treatment was needed in favour of aromatherapy, would the state step in there too?

Yes they would.

A (famous) example of state intervention was the boy who needed a blood transfusion that his Jehovah's Witness parents would not allow on religious grounds, but was given it anyway after state intervention.

If I remember correctly, he was temporarily made a ward of the court, received the transfusion, then returned to the guardianship of his parents.

seamus

mahamageehad wrote: »

However, regarding your point about patient consent, in this case the parents are the legal guardians and they are giving consent on behalf of the child. This type of consent is accepted in many other scenarios, I'd be curious as to why the parents are overruled in this specific case.

Well, consent is not absolute. In legal terms, there are specific things that you cannot consent to, even as an individual.

The barrier is obviously higher for a child (or indeed anyone who is under your care), in that your intention must be in the best interests of the child, or at the very least should not be harmful to the child.

Providing consent on the child's behalf is not exactly the same as providing consent on your own behalf. The consent you can provide on behalf of a child is limited to those things which are in the child's best interests.

Take money as an example. If you receive a large sum of money, it goes in to your bank account and you can do what you like with it, you can take it all out and throw it in the sea if you want, regardless of whether it's in your best interests.

If your child receives a large sum of money, the state holds it in trust. You can apply for some of the funds for specific purposes that are in the child's best interests, but you don't have full control over the funds. In that case, you have much more limited power of consent on behalf of the child than you do for yourself.

gctest50

alf66 wrote: »

....


The baby cannot, and has never been able to, survive without the life support.

false

Guy:Incognito

Seeing as euthanasia is being brought in to it, it very much should be legalised anyway. Forcing someone to stay alive and suffer when all they want to do is end it, is barbaric.


Withdrawing care that is keeping someone alive isn't euthanasia anyway. Euthanasia is bringing death quicker than it would naturally occur. Switching off artificial means of life support is just letting nature take its course. Theoretically, life support could keep the child alive for 90 years. But who would want that?

The Diddakoi

gctest50 wrote: »

False.

Apologies...I stand corrected.

ohnonotgmail

mahamageehad wrote: »

My understanding is that withdrawing life support will end the child's life? In that respect is basically is euthanasia no? I have said that I think that the child should be allowed to die peacefully, I'm just wondering about the legal mechanics of this ruling and any potential knock-on effects.

turning off life support is not euthanasia.

ohnonotgmail

gctest50 wrote: »

false

that was only for the first month or so of the childs life.

gctest50

captbarnacles wrote: »

It has never been tested on Charlie Gard's condition .....

That's a long way from " omg never been tried on humans before "

ohnonotgmail wrote: »

the particular therapy proposed for him has apparently never been tried on humans before......

He is so severe it ain't going to be great though

Here's one that did improve :

ohnonotgmail

gctest50 wrote: »

That's a long way from " omg never been tried on humans before "




He is so severe it ain't going to be great though

Here's one that did improve :

http://imgur.com/a/n6K3F

he has irreversible brain damage. there is no cure for his condition.

mahamageehad

osarusan wrote: »

Euthanasia is not simply the withdrawal or withholding of life support, which happens quite a bit.

Yes they would.

A (famous) example of state intervention was the boy who needed a blood transfusion that his Jehovah's Witness parents would not allow on religious grounds, but was given it anyway after state intervention.

If I remember correctly, he was temporarily made a ward of the court, received the transfusion, then returned to the guardianship of his parents.

Yeah, I completely forgot about the Jehovah blood thing. Makes perfect sense when put like that!

seamus wrote: »

Well, consent is not absolute. In legal terms, there are specific things that you cannot consent to, even as an individual.

The barrier is obviously higher for a child (or indeed anyone who is under your care), in that your intention must be in the best interests of the child, or at the very least should not be harmful to the child.

Providing consent on the child's behalf is not exactly the same as providing consent on your own behalf. The consent you can provide on behalf of a child is limited to those things which are in the child's best interests.

Take money as an example. If you receive a large sum of money, it goes in to your bank account and you can do what you like with it, you can take it all out and throw it in the sea if you want, regardless of whether it's in your best interests.

If your child receives a large sum of money, the state holds it in trust. You can apply for some of the funds for specific purposes that are in the child's best interests, but you don't have full control over the funds. In that case, you have much more limited power of consent on behalf of the child than you do for yourself.

Very interesting, and very clear. Thanks Seamus!

Neyite

The baby has had no brain function for over 7 months. He is being kept artificially alive on life support. There is irreversible brain damage at cellular level and GOSH believe that he can feel pain. It's a case that's at the point of palliative care now. The parents and family of that baby are wasting what precious time they might have with their son on crusading on FB.

The Doctor in the US admitted that the treatment was not likely to help much however if the parents brought the baby as when he initially was asked he did not know the extent or severity of the condition. Moving a person on life support from a hospital bed to ambulance to aeroplane (not forgetting a pressurised cabin to factor in) is an incredible risk to the patient. The baby is not fit to fly.

GOSH did look into whether or not they could do the treatment in the hospital but as it's not gone through lots of the clinical trials they were not able to. Now clinical staff are getting called murderers by FB warriors. People have tweeted Donald Trump. Accused the hospital of covering up and have picketed Buckingham Palace yesterday 'to get the Queen to do something" Have a look at the muppets on the FB page. Paediatric staff are being harassed going into work.

I cannot imagine how it must be to lose a child. I don't even want to imagine. But when a loved one gets to the point where there is only pain and suffering and there is nothing more that medical staff can do, it's just cruel to prolong that pain.

ohnonotgmail

Neyite wrote: »

The baby has had no brain function for over 7 months. He is being kept artificially alive on life support. There is irreversible brain damage at cellular level and GOSH believe that he can feel pain. It's a case that's at the point of palliative care now. The parents and family of that baby are wasting what precious time they might have with their son on crusading on FB.

The Doctor in the US admitted that the treatment was not likely to help much however if the parents brought the baby as when he initially was asked he did not know the extent or severity of the condition. Moving a person on life support from a hospital bed to ambulance to aeroplane (not forgetting a pressurised cabin to factor in) is an incredible risk to the patient. The baby is not fit to fly.

GOSH did look into whether or not they could do the treatment in the hospital but as it's not gone through lots of the clinical trials they were not able to. Now clinical staff are getting called murderers by FB warriors. People have tweeted Donald Trump. Accused the hospital of covering up and have picketed Buckingham Palace yesterday 'to get the Queen to do something" Have a look at the muppets on the FB page. Paediatric staff are being harassed going into work.

I cannot imagine how it must be to lose a child. I don't even want to imagine. But when a loved one gets to the point where there is only pain and suffering and there is nothing more that medical staff can do, it's just cruel to prolong that pain.

the irony about trumps involvement is that trump is the same guy who cut off medical coverage for his nephews son because he fell out with his nephew.

Neyite

ohnonotgmail wrote: »

the irony about trumps involvement is that trump is the same guy who cut off medical coverage for his nephews son because he fell out with his nephew.

Massive irony there but it's going over their heads.

Oh it gets worse though. FB warriors are naming the lead clinicans in the case, and houding them and even phoning Scotland Yard ffs. It's a grotesque circus.

captbarnacles

Bloody hell. The consultants and doctors will be better able to treat the other very sick children in GOSH without this rubbish but nevermind they want their crusade.

mahamageehad

Neyite wrote: »

...

GOSH did look into whether or not they could do the treatment in the hospital but as it's not gone through lots of the clinical trials they were not able to. Now clinical staff are getting called murderers by FB warriors. People have tweeted Donald Trump. Accused the hospital of covering up and have picketed Buckingham Palace yesterday 'to get the Queen to do something" Have a look at the muppets on the FB page. Paediatric staff are being harassed going into work.

...

Whatever about everyone's right to an opinion, this is disgusting. Social media has become a tool to whip people into a frenzy over nothing, and people harassing or abusing staff who have dedicated their lives to helping others just turns my stomach.

Guy:Incognito

Guy:Incognito wrote: »

Parents are not doctors and will usually let their emotions take charge which can result in prolonging suffering. They can't be allowed to just inflict suffering on a child because they happen to have given birth to them. You'll find someone somewhere in the world that will tell you they can cure anything you've got, just by doing a bit of googling. Con men and charlatans will gladly take money of people .


Most people will say "don't let me end up like that , pull the plug" when talking about life in a vegetative state, but often when they are responsible for someone else, will see no issue leaving them like that or worse, prolonging it with intervention, just because they don't want the person to die.

The best interests of the patient is what should come first, regardless of who they are and in a lot of cases , the best thing for someone is to be let die .

I personally believe that in many cases the best thing is for the person to be let die. Prolonging someone's life, someone who requires mechanical aid to breathe and pump blood around their body, makes me feel uneasy. However taking such decisions out of the hands of the family hits a fundamental individual right of freedom in my view. I'm not sure how to reconcile that view with my belief in preventing Jehovah witnesses to be allowed withhold blood transfusions. Afterall that is the same human right. It's complex. One in my opinion prolongs suffering and the other stops necessary life saving medical intervention.

Guy:Incognito

[Deleted User] wrote: »

I personally believe that in many cases the best thing is for the person to be let die. Prolonging someone's life, someone who requires mechanical aid to breathe and pump blood around their body, makes me feel uneasy. However taking such decisions out of the hands of the family hits a fundamental individual right of freedom in my view. I'm not sure how to reconcile that view with my belief in preventing Jehovah witnesses to be allowed withhold blood transfusions. Afterall that is the same human right. It's complex. One in my opinion prolongs suffering and the other stops necessary life saving medical intervention.

The child can't make the decision for themselves and there's no reason why the parents should be able to decide a child should suffer just because they want it to.

I'm all for adults to be let do any horse**** they find in the snake oil section of the Internet to themselves but decisions on kids can and should be routinely taken out of their hands when the overwhelming expert evidence goes against what they are trying to do.

That pair of idiots in Belgium (iirc) that basically starved their child to death a while back being a case in point

gctest50

Neyite wrote: »

(not forgetting a pressurised cabin to factor in) .

Pretty much anyone can fly in an air pressurised cabin

Guy:Incognito

Guy:Incognito wrote: »

The child can't make the decision for themselves and there's no reason why the parents should be able to decide a child should suffer just because they want it to.

I'm all for adults to be let do any horse**** they find in the snake oil section of the Internet to themselves but decisions on kids can and should be routinely taken out of their hands when the overwhelming expert evidence goes against what they are trying to do.

That pair of idiots in Belgium (iirc) that basically starved their child to death a while back being a case in point

Yes I take your point. It's easy to discuss the wrongs and rights of it from a position of remove. The only thing I am 100% certain about is the pain Charlie's parents must be going through.

Guy:Incognito

[Deleted User] wrote: »

. The only thing I am 100% certain about is the pain Charlie's parents must be going through.

Which may well be clouding their judgement.........


Right now I'd like to think I'd do what I think is best for my son should I find myself in the same position and let him go. When faced with it, who knows how the mind works.
Stressful situations is not when pepole make their best and most coherent decisions.

Subcomandante Marcos

SEPT 23 1989 wrote: »

where there is life there is hope

let his parents decide what to do

So the next time the child of a Jehovah's Witness needs a blood transfusion and to save their life and the parents try to block it, the state should stand back and let the child die?

endacl

SEPT 23 1989 wrote: »

where there is life there is hope

let his parents decide what to do

A platitude. There isn't always hope. I sympathise with his parents argument, but it's an argument based on their wish to have a living child, when there is no possibility of same.

Neyite

gctest50 wrote: »

Pretty much anyone can fly in an air pressurised cabin

Not people on life support. No doctor would sign off on that risk and issue a fit-to-fly certification.

end of the road

Neyite wrote: »

Massive irony there but it's going over their heads.

Oh it gets worse though. FB warriors are naming the lead clinicans in the case, and houding them and even phoning Scotland Yard ffs. It's a grotesque circus.

and possibly that is the start of things to come? no doubt this type of thing will get worse as the years go on.

Guy:Incognito wrote: »

The child can't make the decision for themselves and there's no reason why the parents should be able to decide a child should suffer just because they want it to.

I'm all for adults to be let do any horse**** they find in the snake oil section of the Internet to themselves but decisions on kids can and should be routinely taken out of their hands when the overwhelming expert evidence goes against what they are trying to do.

the problem is it won't stop at that situation. before you know it, you have nearly all decisians taken out of the hands of parents as is not far off happening in britain.

gctest50

end of the road wrote: »

and possibly that is the start of things to come? no doubt this type of thing will get worse as the years go on.

Guy:Incognito wrote: »

The child can't make the decision for themselves and there's no reason why the parents should be able to decide a child should suffer just because they want it to.

I'm all for adults to be let do any horse**** they find in the snake oil section of the Internet to themselves but decisions on kids can and should be routinely taken out of their hands when the overwhelming expert evidence goes against what they are trying to do.

the problem is it won't stop at that situation. before you know it, you have nearly all decisians taken out of the hands of parents as is not far off happening in britain.

end of the road wrote: »

.........

any horse**** they find in the snake oil section of the Internet

........

more paddywackery

I think this is where they were in contact with

http://www.cumc.columbia.edu/

gctest50

Neyite wrote: »

Not people on life support. ....

Really ?

I'd reckon you could put EMCO under life support somewhere