Charlie Gard has passed

[SassyIrishLass]

I'm not going to label anything "just or right" on either side.

The experimental treatment was offered without the doctor ever examining the child or the child's full record.

So...my question is how far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

That's question on the table here...

I'll let someone else say it for me...h/t Tim

Why isn’t this being shouted from every pulpit, every Town Hall, every poster, every newspaper, every commercial interruption in America?

Why aren’t those who profess to love Freedom and Liberty NOT hanging this shit around the necks of every nihilistic, totalitarian, Demonrat, Nazi, Fascist, Socialist, Obola-Care-Supporter in America?

Where are the pretentious “Freedom of Choice” advocates?

Life – or Death – it doesn’t get any simpler than that.

I'll ask again - how far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

I don't think there is an easy answer here. A conscious adult can make decisions or provide direction in the form of a living will. A child can't.

So do you have an answer to this question?

Yeah you fucking imbecile keep the goddamn government out of it....is that clear enough for you?

Now stop fucking repeating yourself like you have some "gottcha" moment. Goddamn Fascist

I politely answered YOUR question when you demanded it.

I'll ask again - how far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

I don't think there is a clear answer and that is at the heart of this.

As far as the other child - there really isn't a difference is there Sassy? I do not think you are hard hearted.

Yes there is a difference, an entire world of difference, I don't see anyone in Iraq telling the child's parents they can't bring him here. The kid is caught up in a travel ban, that is nowhere near what prevented Charlie Gard from coming here....or anywhere else for that matter

Is a court in Iraq saying the kid has to die? It's apples and oranges

 

[PredFan]

That is not the case here. It was a case of medical ethics and the child's interests vs the parents. It has nothing to do with socialized medicine.

Oh it does too, just stop already.

There was no reason those parents were prohibited from using their own funds to pursue help for that child. NONE!!!

Except the child isn't property....there are limits in what a parent can do to or with a child.

Like taking their child for experimental treatment that they had funds
to pay for?

Those types of limits?

It's bullshit

Explain how that us just and right in anyway

I'm not going to label anything "just or right" on either side.

The experimental treatment was offered without the doctor ever examining the child or the child's full record.

So...my question is how far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

That's question on the table here...

I'll let someone else say it for me...h/t Tim

Why isn’t this being shouted from every pulpit, every Town Hall, every poster, every newspaper, every commercial interruption in America?

Why aren’t those who profess to love Freedom and Liberty NOT hanging this shit around the necks of every nihilistic, totalitarian, Demonrat, Nazi, Fascist, Socialist, Obola-Care-Supporter in America?

Where are the pretentious “Freedom of Choice” advocates?

Life – or Death – it doesn’t get any simpler than that.

I've been posting it all over Facebook.

 

[Coyote]

Stop trying to explain that the best interests of the patient is to die. That's ridiculous. Many killers have used that excuse. It doesn't work.

Socialized medicine is all about how many people die. That's success. It's part of utopian philosophy. Medical innovation and extending life is prohibited and that is why Charlie Gard died.

NPR did an interesting series some time back on medical systems in other countries as well as ours - how they worked, what their citizens felt about them etc - even "socialized" medicine takes many different forms. What was interesting was the expectations for things like end of life care and choices. What summed it up was a quote from a European: Europeans feel death is inevitable. Americans feel death is negotiable.

Socialized medicine is not about "how many people die" but about how many people have access to care. And, as I pointed out those who can AFFORD to, can go outside the system for care. Unlike here for example...where those that CAN'T AFFORD it...don't get care.

And unlike the Charlie Gard case over THERE, they could afford to but weren't allowed.

Sort of...they collected donations from crowd source funding. There is no information on whether this other child doesn't also have charitable funding or donations.

 

[Coyote]

I'll let someone else say it for me...h/t Tim

Why isn’t this being shouted from every pulpit, every Town Hall, every poster, every newspaper, every commercial interruption in America?

Why aren’t those who profess to love Freedom and Liberty NOT hanging this shit around the necks of every nihilistic, totalitarian, Demonrat, Nazi, Fascist, Socialist, Obola-Care-Supporter in America?

Where are the pretentious “Freedom of Choice” advocates?

Life – or Death – it doesn’t get any simpler than that.

I'll ask again - how far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

I don't think there is an easy answer here. A conscious adult can make decisions or provide direction in the form of a living will. A child can't.

So do you have an answer to this question?

Yeah you fucking imbecile keep the goddamn government out of it....is that clear enough for you?

Now stop fucking repeating yourself like you have some "gottcha" moment. Goddamn Fascist

I politely answered YOUR question when you demanded it.

I'll ask again - how far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

I don't think there is a clear answer and that is at the heart of this.

As far as the other child - there really isn't a difference is there Sassy? I do not think you are hard hearted.

Yes there is a difference, an entire world of difference, I don't see anyone in Iraq telling the child's parents they can't bring him here. The kid is caught up in a travel ban, that is nowhere near what prevented Charlie Gard from coming here....or anywhere else for that matter

Is a court in Iraq saying the kid has to die? It's apples and oranges

I don't see any difference - the child could be treated if allowed to come here. The fact that it's the government on the other side of the ocean making that decision makes no difference.

 

[PredFan]

Stop trying to explain that the best interests of the patient is to die. That's ridiculous. Many killers have used that excuse. It doesn't work.

Socialized medicine is all about how many people die. That's success. It's part of utopian philosophy. Medical innovation and extending life is prohibited and that is why Charlie Gard died.

NPR did an interesting series some time back on medical systems in other countries as well as ours - how they worked, what their citizens felt about them etc - even "socialized" medicine takes many different forms. What was interesting was the expectations for things like end of life care and choices. What summed it up was a quote from a European: Europeans feel death is inevitable. Americans feel death is negotiable.

Socialized medicine is not about "how many people die" but about how many people have access to care. And, as I pointed out those who can AFFORD to, can go outside the system for care. Unlike here for example...where those that CAN'T AFFORD it...don't get care.

And unlike the Charlie Gard case over THERE, they could afford to but weren't allowed.

Sort of...they collected donations from crowd source funding. There is no information on whether this other child doesn't also have charitable funding or donations.

It seems that if they did get the money, they would not be allowed.

 

[Coyote]

How far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

 

[PredFan]

How far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

Pain? Distress? You don't know that. We have ways to deal with both.

 

[Coyote]

How far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

Pain? Distress? You don't know that. We have ways to deal with both.

The problem with Charlie was no one could tell. How would he handle a transatlantic flight and the pressures? A lot of questions for a treatment that offered almost a nonexistent chance given the degree of damage already done - brain tissue that badly damaged doesn't regenerate for example and that was in January when he began suffering seizures.

 

[irosie91]

How far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

there was no evidence of pain and distress as far as I know. Even if the child SEEMED
to grimace or weep-----I have no idea if he did-----such a manifestation would
not prove or even suggest that he has any awareness at all. -----the roving eyes of a
human in the status of "comadepasse" is deceiving. I did not buy into the "suffering"
thing that the british authorities tried to pass of as FACT. ------anyone know the actual diagnosis?

 

[Coyote]

How far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

there was no evidence of pain and distress as far as I know. Even if the child SEEMED
to grimace or weep-----I have no idea if he did-----such a manifestation would
not prove or even suggest that he has any awareness at all. -----the roving eyes of a
human in the status of "comadepasse" is deceiving. I did not buy into the "suffering"
thing that the british authorities tried to pass of as FACT. ------anyone know the actual diagnosis?

That's kind of what I meant. No one knows for sure what he is feeling or capable of feeling, you can't make assumptions. Do you assume he doesn't feel anything? I think that is kind of a risky thing to assume.

The actual diagnosis was some sort of mitochondria defect.

 

[badger2]

"Nothing is hidden." Competition and knowledge envy are hidden within this story.

Dr. Jayaram: "Only GOSH, Charlie's parents, and respective legal teams had seen everything."

We can appreciate Jayaram's approach to esoterica to help mystify the story. Only a handful of (esoteric) experts who know each other could really comment on this arrogance. The corresponding anal retention is that Hirano is reified as an entity whilst what he proposed is also kept esoteric. This shows that others other than Hirano had evidence, because Hirano had to rely on others' studies to propose the other evidence in the first place. Once again, these other entities are kept hidden from view, which makes it easy for Jayaram to invoke terms such as "speculation."

 

[irosie91]

How far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

there was no evidence of pain and distress as far as I know. Even if the child SEEMED
to grimace or weep-----I have no idea if he did-----such a manifestation would
not prove or even suggest that he has any awareness at all. -----the roving eyes of a
human in the status of "comadepasse" is deceiving. I did not buy into the "suffering"
thing that the british authorities tried to pass of as FACT. ------anyone know the actual diagnosis?

That's kind of what I meant. No one knows for sure what he is feeling or capable of feeling, you can't make assumptions. Do you assume he doesn't feel anything? I think that is kind of a risky thing to assume.

The actual diagnosis was some sort of mitochondria defect.

the person who could render the most reliable opinion would be the neurologist that examined him

 

[badger2]

Not necessarily the neurologist is the most reliable when the patient hovers on the interstice of the vegetative state. One approach is to go back to the concept of neurogastrointestinal encephalomyopathy, just as we are doing on the cancer thread.
Administration of deoxyribonucleosides or inhibition of their catabolism as a pharmacological approach for mitochondrial DNA depletion syndrome. - PubMed - NCBI

 

[PredFan]

How far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

Pain? Distress? You don't know that. We have ways to deal with both.

The problem with Charlie was no one could tell. How would he handle a transatlantic flight and the pressures? A lot of questions for a treatment that offered almost a nonexistent chance given the degree of damage already done - brain tissue that badly damaged doesn't regenerate for example and that was in January when he began suffering seizures.

Being in Medicine myself, I've seen brain damages people accomplish amazing things.

The point is that it wasn't the courts decision to make.

 

[irosie91]

Not necessarily the neurologist is the most reliable when the patient hovers on the interstice of the vegetative state. One approach is to go back to the concept of neurogastrointestinal encephalomyopathy, just as we are doing on the cancer thread.
Administration of deoxyribonucleosides or inhibition of their catabolism as a pharmacological approach for mitochondrial DNA depletion syndrome. - PubMed - NCBI

ok----very complicated-----but you cannot FIX MITOCHONDRIA -------at this point in history. The problem is not a single gene that can be VECTORED in--------the mitochondria have MINDS OF THEIR OWN----THEIR OWN SELF REPRODUCING COMMUNITIES-- SO FAR THERE IS NO total mitochondria exchange

 

[irosie91]

How far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

Pain? Distress? You don't know that. We have ways to deal with both.

The problem with Charlie was no one could tell. How would he handle a transatlantic flight and the pressures? A lot of questions for a treatment that offered almost a nonexistent chance given the degree of damage already done - brain tissue that badly damaged doesn't regenerate for example and that was in January when he began suffering seizures.

Being in Medicine myself, I've seen brain damages people accomplish amazing things.

The point is that it wasn't the courts decision to make.

Good point----but being in medicine myself----I would say that even with the various manipulations
available----this poor kid was not really going to get anywhere but miserable-----sad but true

 

[PredFan]

How far can you ethically be allowed to go in creating pain and distress to a child without out a reasonable expectation of some improvement?

Pain? Distress? You don't know that. We have ways to deal with both.

The problem with Charlie was no one could tell. How would he handle a transatlantic flight and the pressures? A lot of questions for a treatment that offered almost a nonexistent chance given the degree of damage already done - brain tissue that badly damaged doesn't regenerate for example and that was in January when he began suffering seizures.

Being in Medicine myself, I've seen brain damages people accomplish amazing things.

The point is that it wasn't the courts decision to make.

Good point----but being in medicine myself----I would say that even with the various manipulations
available----this poor kid was not really going to get anywhere but miserable-----sad but true

You can't say that, you don't know that. The point is still that it isn't the court's decision to make. Or it shouldn't be anyway. Single payer, single decider, and it ain't you.

 

[jillian]

Any thinking and caring person would think that...you have to try

They should have at least been given the option, even if it was a fool's hope.

Ponder it for a minute. Having to BEG for permission to allow your child a shot at new therapy. Wasn't actually a fools hope. At that point, you take the doctor that gives you 20%...

and if you have to beg a profit driven insurance company? get real.

seriously...


and in any event why would you want to torture a being who can neither breathe on his own nor move by forcing extraodinary measures to keep him alive?

 

[flacaltenn]

Bear in mind however that in January, the only medical professionals in a position to fully assess Charlie and have enough information to make informed judgments on his prognosis were those at GOSH. GOSH also asked other external, experienced paediatricians to assess him independently, including a metabolic specialist from Southampton whom Charlie’s parents had wanted to assess him. All of these professionals agreed with the GOSH view that his underlying condition had progressed to a point where any intervention would be futile, only serving to prolong the process of dying rather than improving his quality of life.

I've explained that. ASSESSMENT in this case, means days of lab tests to determine the suitability of NBT. Tests that can NOW only be done in the specialized lab of Dr Hirano with a full staff trained for the protocols.

GOSH ADMITS it lacked the ability to judge the efficacy of the NBT treatment or they wouldn't be asking Hirano to come talk to them. And a favorable RECOMMENDATION from them would not ASSURE that NHS would release the child for treatment anyway..

WAS NO REASON for Hirano to visit. WAS --- a reason to get the child to his lab in the US... So GOSH being a structural bureaucracy with ZERO INCENTIVE to save the child -- just decided to deprive him of a chance for remission.

When you're racing the clock, there is NO TIME for Bureaucratic "diplomacy". They will kill a HUNDRED Charlies before anyone prioritizes a "Fast Track" approval for cases like this.

Researchers are NOT ADVOCATES. Couldn't live with themselves if they OVERSOLD hope. THey need to MEASURE and ASSESS their technique in THEIR LAB before handing out any hope.

I know this. I understand a lot of the new "custom gene therapy" that's going on. I've been to many specialized labs to understand the equipment I design for their processes. And my daughter is now is this area.

It's NOT portable. In any shape or form. And in terms of ASSESSING any CURRENT med stats on the child, it's ALL on record. Don't NEED a stethoscope or to touch him....

 

[flacaltenn]

Understand that by APRIL -- Courts had already RULED not only to deny transfer of care --- BUT they ruled to PULL HIS PLUG.. To kill him back in April... And there were extensions to this. But it took from January to April for fucking Bureaucracy to RULE. And then an appeal to the Intl Courts.

Parents had procured FUNDING and the tactical problems of life flighting over to the US in JANUARY...

Dr Hirano would NOT have allowed that transfer to happen, if he believed it would kill the child or that the child was too far progressed to treat.. IN JANUARY --- when it NEEDED to happen..

Timeline: Parents' battle to save Charlie Gard

The PROCESS killed Charlie and they wanted him DEAD BEFORE April...