Charlie Gard

[glorybebe]

I  can't believe the arrogance and ignorance that is being expressed to condemn a child's body to be kept alive with machines.  A prisoner in jail isn't subjected to such torture why is it ok to make this baby suffer like that?  I always taught my daughter just because you can doesn't mean you should and that fits right here.  Just because they can keep him alive doesn't mean they should.  Why keep making him suffer?  That is too cruel for words.

[Still Waters]

9 minutes ago, preacherman76 said:

So a judge knows better then  top of their field Doctors given the task of creating new experimental drugs for this exact disease? You don't see a flaw in that line of thinking?

In Charlie Gard's case the judge is acting on information/reports given to him by all the medical staff involved in his care, it's already been concluded that Charlie can't be helped and even his parents have accepted that now.

The current situation is where the best place is for Charlie to spend his final days. His parents want him home but because of all the medical equipment he needs a hospice has been mentioned. The court hasn't reached a final decision yet as to where it will be.

Quote

Charlie Gard: No agreement over where baby moved for final days.

http://www.bbc.co.uk/news/uk-england-40733491

There is live reporting on Skye News -

Quote

The latest developments as a judge rules on where the terminally ill 11-month-old will spend the final days of his life.

http://news.sky.com/story/live-parents-learn-if-charlie-gard-can-go-home-10962631

 

[GlitterRose]

23 minutes ago, preacherman76 said:

So a judge knows better then  top of their field Doctors given the task of creating new experimental drugs for this exact disease? You don't see a flaw in that line of thinking?

Who do you think went to the judge in the first place? The docs who knew this wouldn't help, and would be essentially torturing a dying child.

[preacherman76]

3 minutes ago, Still Waters said:

In Charlie Gard's case the judge is acting on information/reports given to him by all the medical staff involved in his care, it's already been concluded that Charlie can't be helped and even his parents have accepted that now.

The current situation is where the best place is for Charlie to spend his final days. His parents want him home but because of all the medical equipment he needs a hospice has been mentioned. The court hasn't reached a final decision yet as to where it will be.

There is live reporting on Skye News -

 

Oh I know there is no helping him now. Way to much time has past. The legal hurtles they made the parents go through made sure of that. 

[preacherman76]

5 minutes ago, ChaosRose said:

Who do you think went to the judge in the first place? The docs who knew this wouldn't help, and would be essentially torturing a dying child.

Yes Doctors who are not in the top of their fields regarding this disease. Who are not working on experimental drugs, that have already proven effective in one case. Its those doctors that gave this family hope. Gave them a reason to fight. It proved to much for them to be able to fight both this disease, and a tyrannical medical establishment using draconic courts.   

[GlitterRose]

1 minute ago, preacherman76 said:

Yes Doctors who are not in the top of their fields regarding this disease. Who are not working on experimental drugs, that have already proven effective in one case. Its those doctors that gave this family hope. Gave them a reason to fight. It proved to much for them to be able to fight both this disease, and a tyrannical medical establishment using draconic courts.   

From what I've read, even the people working on the experimental treatment agree it wouldn't have helped the child. Every case is different.

[preacherman76]

12 minutes ago, ChaosRose said:

Who do you think went to the judge in the first place? The docs who knew this wouldn't help, and would be essentially torturing a dying child.

They didn't know that. There is no way they could have known that. People who actually specialize in this disease should have been the ones who decided if there was a chance. They thought it was worth a shot.

[GlitterRose]

Just now, preacherman76 said:

They didn't know that. There is no way they could have known that. People who actually specialize in this disease should have been the ones who decided if there was a chance. They thought it was worth a shot.

Yes, you actually could know that a patient is so far gone that a treatment helpful to someone else would not be helpful to them.

[preacherman76]

3 minutes ago, ChaosRose said:

From what I've read, even the people working on the experimental treatment agree it wouldn't have helped the child. Every case is different.

From what Ive read the people working on the experimental treatment gave him between a 10, to 50% shot. In the early stages.

[GlitterRose]

1 minute ago, preacherman76 said:

From what Ive read the people working on the experimental treatment gave him between a 10, to 50% shot. In the early stages.

I'll look if you have links to support that. 

The other problem is that there are always unscrupulous people willing to take money. It doesn't mean it's necessarily in the best interests of the patient. 

[GlitterRose]

Here's a blog on the practical ethics of the case. 

Some highlights...

One important element of the dissensus approach is that it is based on reasonable disagreement. It cannot be that just any view counts.

First, a ‘reasonable’ view has to be one that is based on, and sensitive to the right kinds of reason. If the willingness to provide treatment were based purely upon ability to pay and parental request, then that would clearly not be a reasonable view. As a society, we don’t think that parents can impose just any treatment that they like on their child if they can pay for it.

Second, a ‘reasonable’ view has to be based upon the right factual knowledge. In the transcript from the High Court judgement, Justice Francis noted that the US expert had not seen or examined Charlie. The expert himself admitted to the difficulty of making an assessment at a distance “Perhaps, if I were there, I would support it [withdrawal of treatment]. Not seeing the child, not seeing progression, it’s difficult for me to make an assessment.” 

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwjujfeErqfVAhWHbiYKHfm1Cj8QFggmMAA&url=http%3A%2F%2Fblog.practicalethics.ox.ac.uk%2F2017%2F05%2Fagreement-and-disagreement-about-experimental-treatment-the-charlie-gard-appeal%2F&usg=AFQjCNF5433rEJaKu5nc-oKeeWLc-Fc0ng

[GlitterRose]

I'm reading that in early March he was already breathing only with a ventilator and that he was being fed through a tube. I'm not sure how the experimental treatment could have helped even if given at this earlier stage. 

The other child had a less severe type of mitochondrial depletion. I can't find it anywhere that he was not breathing on his own. 

 

Edited July 26, 2017 by ChaosRose

[Claire.]

6 hours ago, eugeneonegin said:

And you would expect them to pay for ever, for an objective they felt was futile?

And even the doctor "approving" the treatment (without knowing the case) knew it  was futile?:http://www.dailymail.co.uk/news/article-4730974/US-doctor-offered-help-Charlie-Gard-speaks-out.html

Yes I would expect them to pay. It would set a dangerous precedent otherwise,

[Claire.]

3 hours ago, preacherman76 said:

From what Ive read the people working on the experimental treatment gave him between a 10, to 50% shot. In the early stages.

How could they know that not having examined Charlie? They had not even spoken to his doctors or reviewed his medical files in detail.

[Claire.]

3 hours ago, preacherman76 said:

So a judge knows better then  top of their field Doctors given the task of creating new experimental drugs for this exact disease? You don't see a flaw in that line of thinking?

No, that's not how it works. The judged weighed evidence from both sides. Furthermore, in spite of his claims, the doctor working on the experimental therapy was not at all up to speed on Charlie's case initially, and the minimal success he had to date was on patients whose conditions were not identical to Charlie's.

[Still Waters]

Quote

The parents of terminally-ill Charlie Gard have agreed he should spend his final days in a hospice.

His parents and the hospital have until 12:00 BST on Thursday to agree his end of life care and how long he has left.

Setting the deadline, Mr Justice Francis said he hoped all parties could reach an agreement by 12:00 BST on Thursday, otherwise Charlie would be moved anyway and his life support treatment ended soon after that.

http://www.bbc.co.uk/news/uk-england-40733491

Quote

Lawyer Grant Armstrong, representing Charlie's parents, indicated that the couple wanted to privately fund treatment at a hospice, where the 11-month-old would stay on life support for a number of days.

However, Great Ormond Street Hospital (GOSH) bosses said Charlie should stay at a hospice for a shorter period and expressed doubt over the proposed care arrangements.

A hospital representative described the parents' plans as not "in any way viable".

http://news.sky.com/story/stalemate-over-care-for-charlie-gards-final-days-10962991

 

[Claire.]

We always start such painful journeys by making decisions that are for the benefit of our loved ones, and them alone. Invariably, however, the time will come when it's no longer about them, it's about us, and that, in my opinion, is the one place we should never allow ourselves to go,

[+DieChecker]

On 7/25/2017 at 11:28 AM, Gromdor said:

I'll be brutally blunt.  From everything I have read, the kid was already dead. The only thing giving the illusion of life was the machines keeping the body alive.  It took the American doctor coming over and saying that it was no good for the parents to finally accept it.  

I still think that regardless, if the kid was as good as dead, why not allow the parents to follow an alternative treatment that they did have the resources to cover. The London Hospital would have zero expense and zero responsibility. AND, this all could have been done months ago.

[+DieChecker]

16 hours ago, Still Waters said:

Quote

However, Great Ormond Street Hospital (GOSH) bosses said Charlie should stay at a hospice for a shorter period and expressed doubt over the proposed care arrangements.

A hospital representative described the parents

 

Clinging to their power to the very last second.

[GlitterRose]

1 hour ago, DieChecker said:

I still think that regardless, if the kid was as good as dead, why not allow the parents to follow an alternative treatment that they did have the resources to cover. The London Hospital would have zero expense and zero responsibility. AND, this all could have been done months ago.

Because it's not ethical. 

It's fraud. For taking their money, first of all. And worse than that, because it gives them false hope. That's the cruelest thing about it.

Edited July 27, 2017 by ChaosRose

[GlitterRose]

There's also the matter of causing undue suffering for no good reason.

[Unusual Tournament]

On 02/07/2017 at 4:52 AM, and then said:

I hope you are correct.  The bottom line is that $ is tight and will only get tighter because of our debt load.  That equates to shrinking resources and prioritizing.  When the government pays, the government decides.

I really don't think that Charlie's situation is just about money but being realistic. and while we are talking about being realistic the doctor that promised some much to Charlie's parents was not. Experimental treatments are no guarantee and I think that the doctor in question unnecessarily raised the hopes of Charlie's parents to the point were Charlie's poor outlook on life even if the treatments helped was never going to reverse his condition, instead turned the court proceedings into a p***ing contest by everyone including Charlie's parents trying to jockey for what seems some type of financial payout.

Poor Charlie

 

[Unusual Tournament]

On 27/07/2017 at 6:26 AM, Claire. said:

We always start such painful journeys by making decisions that are for the benefit of our loved ones, and them alone. Invariably, however, the time will come when it's no longer about them, it's about us, and that, in my opinion, is the one place we should never allow ourselves to go,

which is exactly what has happened. Charlie's parents have made a medical decision person without having to be.

[Unusual Tournament]

On Monday, Great Ormond Street hospital made a statement to the court strongly criticising Hirano, who gave evidence to the court by video link and was never cross-examined, because Charlie’s parents gave up their case. 

Charlie Gard: judge to decide on Wednesday if child can die at home

“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,” the statement said. The hospital also criticised Hirano for not declaring earlier his “financial interest” in some of the drugs he wanted to prescribe.

https://www.google.com.au/amp/s/amp.theguardian.com/uk-news/2017/jul/25/michio-hirano-us-doctor-intervention-charlie-gard-case-raises-ethical-questions

[glorybebe]

16 minutes ago, Captain Risky said:

On Monday, Great Ormond Street hospital made a statement to the court strongly criticising Hirano, who gave evidence to the court by video link and was never cross-examined, because Charlie’s parents gave up their case. 

Charlie Gard: judge to decide on Wednesday if child can die at home

“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,” the statement said. The hospital also criticised Hirano for not declaring earlier his “financial interest” in some of the drugs he wanted to prescribe.

https://www.google.com.au/amp/s/amp.theguardian.com/uk-news/2017/jul/25/michio-hirano-us-doctor-intervention-charlie-gard-case-raises-ethical-questions

Totally doesn't surprise me that Hirano was out for money and to make a name for himself.  He put the parents through so much more pain than they already experienced with his false claims.   What a b******.  I hope his medical career suffers because of this.