The plight of Charlie Gard

RobertKK

I expect lots here heard of the struggle of the parents of Charlie Gard to save his life.
Charlie Gard is a baby that the courts in the UK and Europe refused to allow experimental treatment for mitochondrial DNA depletion syndrome, by taking him to the US.

They want to take their child to the US for treatment where a child did recover after getting an experimental treatment for the same condition.
The parents were also told they could not bring their child home to die.

Pope Francis got involved and supported the parents saying their child should not be neglected and should receive treatment.

President Trump tweeted:
https://twitter.com/realdonaldtrump/status/881875263700783104

The child is going to die with no treatment, I can't see why the parents were refused to allow their child get treatment.
It doesn't make sense to me.

captbarnacles

This explains it:

http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

There is unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage. 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.
The Great Ormond Street Team believe that Charlie can probably experience pain, but is unable to react to it in a meaningful way. Their evidence was that being ventilated, being suctioned, living as Charlie does, are all capable of causing pain. Transporting Charlie to the USA would be problematic, but possible. Subjecting him to nucleoside therapy is unknown territory - it has never even been tested on mouse models - but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie's damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?
It is with the heaviest of hearts but with complete conviction for Charlie's best interests that I find that it is in Charlie's best interests that I accede to these applications and rule that Great Ormond Street Hospital may lawfully withdraw all treatment, save for palliative care, to permit Charlie to die with dignity.

LadyMacBeth_

I can't understand it either, surely he will die without treatment so what's the harm in trying it unless it's extremely painful/invasive but even so, if there is a chance that he could live then his parents should be entitled to make that decision. I also don't understand why the parents are being forced to accept the withdrawal of treatment, am I missing something? There are people who are kept in a vegetative state for years with no hope of recovery, not that I personally agree with that but it is up to the family to decide. Maybe there are different rules in the UK, I tend to only hear about long term coma patient in the US.

hollypink

RobertKK wrote: »

The child is going to die with no treatment, I can't see why the parents were refused to allow their child get treatment.
It doesn't make sense to me.

Those poor parents - what a terrible time this must be for them. The refusal seems to be because the court considers this will cause the baby harm by prolonging his suffering with no likelihood of improving his condition. I can see that but I think it should be the parents call.

From https://www.theguardian.com/us-news/2017/jul/03/donald-trump-offers-help-for-terminally-ill-baby-charlie-gard

British courts have already concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely Charlie would suffer significant harm if his suffering was prolonged without realistic prospect of improvement. The experimental therapy, the courts maintained, would produce no effective benefit.

osarusan

I haven't been following this story all that closely.

As I understand it, the NHS wants to switch off his life support, and is of the opinion that the esperimental treatment will have no benefit and will only prolong his suffering. British and European courts have agreed with that position.

But the parents have raised more than a million pounds, and hospitals in the US have offered the treatment for free.

Is the NHS/Court in a position to actually stop Charlie leaving the country (on the grounds that it would cause unnecessary suffering or something like that)...or is it just that they won't finance it?

captbarnacles

From above:

But if Charlie's damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?

This treatment cannot improve his current condition, it could possibly keep him alive as he is but even that is very unlikely and his parents do not want him to have to suffer as he is.

Lollipops23

My understanding was that the child is in pain every moment of every day. Uprooting him and putting him through a therapy that more than likely will not work is just dragging it out and putting him through far more stress and pain than is necessary. He should be allowed to slip away gently and surrounded by the his loved ones.

I can't imagine what his parents are going through.

gctest50

Lollipops23 wrote: »

My understanding was that the child is in pain every moment of every day. Uprooting him and putting him through a therapy that more than likely will not work is just dragging it out and putting him through far more stress and pain than is necessary. He should be allowed to slip away gently and surrounded by the his loved ones.

I can't imagine what his parents are going through.

Lollipops23 wrote: »

..................

Uprooting him and putting him through a therapy that more than likely will not work .

it’s a non-harmful, non-invasive oral medication


"They" started the same crap with Ashya King, : ( seems to worked for him, may not work for all )


https://www.theguardian.com/uk-news/2015/mar/23/ashya-king-now-free-of-cancer-after-proton-therapy-say-parents

.

ohnonotgmail

gctest50 wrote: »

it’s a non-harmful, non-invasive oral medication


"They" started the same crap with Ashya King, : ( seems to worked for him, may not work for all )


https://www.theguardian.com/uk-news/2015/mar/23/ashya-king-now-free-of-cancer-after-proton-therapy-say-parents

.

the particular therapy proposed for him has apparently never been tried on humans before. he also has structural brain damage. no therapy will reverse that.

gctest50

ohnonotgmail wrote: »

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

false

seamus

osarusan wrote: »

Is the NHS/Court in a position to actually stop Charlie leaving the country (on the grounds that it would cause unnecessary suffering or something like that)...or is it just that they won't finance it?

They are in a position to stop them.

Parents are guardians of their children, not masters or owners. The parents' duty is to care for the child and look after their best interests.

Where a parent is failing to do that or intends to do something which is directly harmful to the child, then the state has a duty to step in to safeguard that child's best interests. Most countries, including Ireland, have a process where a court can basically take over where a parent is failing - either temporarily or permanently. A good example would be a Jehovah's Witness refusing a blood transfusion for their child.

Sometimes the best interests of a human being is not prolonging their suffering, and allowing them to die.

Everything I've seen says that what the parents plan on doing amounts to little more than an experiment. I understand their mindset, but it's irrational and unfair on the child - the parents are putting hope and emotion above his best interests.

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?

ohnonotgmail

gctest50 wrote: »

false

So his doctors at great ormond street are wrong?

Subjecting him to nucleoside therapy is unknown territory - it has never even been tested on mouse models -

No offence but i will take their word over yours.

osarusan

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.

Don't the two statements in bold contradict each other though?

SEPT 23 1989

where there is life there is hope

let his parents decide what to do

osarusan

osarusan wrote: »

Don't the two statements in bold contradict each other though?

It doesn't sit well with me that the courts are involved. Ultimately the parents should have the choice I believe but it's not a choice I agree with.

Tabnabs

BBC 4 had an interview last week with a doctor who was the head of the Institute of Medical Ethics (although interviewed in a personal capacity). He was deeply troubled at the court ruling and supported the parents right to get the treatment in the USA. It was his view that the parents and not the courts should have the final say in this case and that there were a number of flaws in the court ruling.

This was on the same day that the parents revealed that the hospital would not allow Charlie to be taken home one last time and allowed die in peace and dignity, surrounded by his family.

What a world...

gctest50

seamus wrote: »

..........
Where a parent is failing to do that or intends to do something which is directly harmful to the child, then the state has a duty to step in to safeguard that child's best interests......

A good example would be a Jehovah's Witness refusing a blood transfusion for their child.
...........

They are not bringing him to a faith healer - they are bringing him to a hospital/clinic in the USA

seamus wrote: »

intends to do something which is directly harmful to the child

It is reasonable to assume a hospital in the USA will not intend to do something harmful to the child

seamus

gctest50 wrote: »

They are not bringing him to a faith healer - they are bringing him to a hospital/clinic in the USA

And that's the bit that'll cause harm.
How do you think he's going to get there?

mahamageehad

It's a terrible case. I do think the fact that it went to court has probably forced the parents to listen to the expert's opinions in a way that they mightn't have before, and I do think it's in the best interests of the child to die in peace and end his suffering.

All that said, I can't understand how the parents can be blocked from this if they have a hospital willing to do it, and the means to finance it. Either way the child is going to die anyway, and if they want to prolong their child's suffering to chase an untested miracle cure, I'm surprised the state can step in to stop them. In most other cases where a person is in chronic, terminal pain, it's not allowed to end their life peacefully, so why is it different here? Is it because it's a baby?

captbarnacles

Tabnabs wrote: »

BBC 4 had an interview last week with a doctor who was the head of the Institute of Medical Ethics (although interviewed in a personal capacity). He was deeply troubled at the court ruling and supported the parents right to get the treatment in the USA. It was his view that the parents and not the courts should have the final say in this case and that there were a number of flaws in the court ruling.

This was on the same day that the parents revealed that the hospital would not allow Charlie to be taken home one last time and allowed die in peace and dignity, surrounded by his family.

What a world...

How exactly was this going to be managed? he is mechanically ventilated.

I wish people would read the case details and the actual judgement instead of going by hysterical social media headlines or the dailymail.

Water John

Its a Wisdom of Solomon case. Its not the parents sole call. The child has interests which the law must respect too.

mahamageehad

seamus wrote: »

And that's the bit that'll cause harm.
How do you think he's going to get there?

If transport is inherently the issue, and not the treatment itself, what are the barriers to flying a doctor over from the US to perform the treatment in the UK? I don't know enough about the treatment in this instance.

ohnonotgmail

mahamageehad wrote: »

It's a terrible case. I do think the fact that it went to court has probably forced the parents to listen to the expert's opinions in a way that they mightn't have before, and I do think it's in the best interests of the child to die in peace and end his suffering.

All that said, I can't understand how the parents can be blocked from this if they have a hospital willing to do it, and the means to finance it. Either way the child is going to die anyway, and if they want to prolong their child's suffering to chase an untested miracle cure, I'm surprised the state can step in to stop them. In most other cases where a person is in chronic, terminal pain, it's not allowed to end their life peacefully, so why is it different here? Is it because it's a baby?

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.

The Diddakoi

mahamageehad wrote: »

In most other cases where a person is in chronic, terminal pain, it's not allowed to end their life peacefully, so why is it different here? Is it because it's a baby?

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.

Water John

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

The_Valeyard

Those poor parents. My heart really feels for them. What a position to be in Very hard to be objective in a case like that. But i know if it were my child, I'd move heaven and earth to save them.


Part of me thinks this poor child is in so much pain is it not better to let him go peacefully and without pain. But another part of me thinks if even there was a slight chance that this trip to USA could work, wouldnt you try it?


It is very parents worst nightmare and worse.

seamus

mahamageehad wrote: »

Either way the child is going to die anyway, and if they want to prolong their child's suffering to chase an untested miracle cure, I'm surprised the state can step in to stop them.

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.

In most other cases where a person is in chronic, terminal pain, it's not allowed to end their life peacefully, so why is it different here? Is it because it's a baby?

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

mahamageehad wrote: »

If transport is inherently the issue, and not the treatment itself, what are the barriers to flying a doctor over from the US to perform the treatment in the UK? I don't know enough about the treatment in this instance.

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.

Akrasia

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?

It definitely is a matter for the courts sometimes, take Jehovas witnesses for example, sometimes they would choose to let their children die rather than give them lifesaving blood transfusions. Parental rights have limits and parents do not have the right to cause undue suffering to their children, even if their motives are good, if they are disregarding all the best medical advice and there is no hope of a positive outcome, they should let their son die.

Hope is not always positive when it leads people to make bad choices. There are no shortage of snake oil salesmen preying on the hope of distraught parents claiming cures that they cannot deliver. Sometimes parental judgement can be severely impaired and the courts need to step in

gctest50

ohnonotgmail wrote: »

So his doctors at great ormond street are wrong?

Subjecting him to nucleoside therapy is unknown territory - it has never even been tested on mouse models -

No offence but i will take their word over yours.

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

ohnonotgmail wrote: »

Subjecting him to nucleoside therapy is unknown territory - it has never even been tested on mouse models -

Fine healthy looking mouse :

LadyMacBeth_

If the child is in constant pain then I do feel that prolonging his agony is not the best choice, though I don't feel I know enough about this experimental therapy to comment on it. I wonder why the hospital won't allow the parents to take the child home to die though? Palliative care can be set up from home and his suffering would end, as the hospital proposes ending treatment anyway. Maybe they think the parents will actually take him to the US, rather than home.