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Charlie Gard


OverSword
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On 7/27/2017 at 7:12 AM, ChaosRose said:

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.

I don't believe it was false hope. The doctor that flew to examine Charlie from New York had treated a similar child who is now 5 years old and has meaningful communication and movement.

Who are you to determine what hope is false, or not? You would be more then willing to sit on a panel that decides who lives and who dies and call letting people die Ethical?

On 7/28/2017 at 1:20 AM, Captain Risky said:

To get outta the way so Charlie could go through more questionable treatments with no guarantee of giving Charlie anything resembling normal quality of life.

I commend the parents for fighting for their son and exploring all options but at some point reason had to move in and end this. and the hospital and courts did.

Guarantee? What guarantees are there in life. I went in for a simple chest surgery a year ago, and they had me sign all the wavers and whatnot... Because there isn't any guarantee you will survive any procedure. Even getting a flu shot can be the root cause of someone's death.

Truthfully...... Do you really feel that Quality of Life should be the defining method? Would you just let someone like Stephen Hawking die from lack of treatment, because you feel they lack quality of life? I don't believe that is a choice the government should be making.

That then will lead to defining "Quality of Life" and attaching different levels to different levels of quality. Sigh....            Which means medical panels deciding who lives and who dies, based on their opinions.

RIP Charlie.

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15 hours ago, DieChecker said:

I don't believe it was false hope. The doctor that flew to examine Charlie from New York had treated a similar child who is now 5 years old and has meaningful communication and movement.

Who are you to determine what hope is false, or not? You would be more then willing to sit on a panel that decides who lives and who dies and call letting people die Ethical?

Guarantee? What guarantees are there in life. I went in for a simple chest surgery a year ago, and they had me sign all the wavers and whatnot... Because there isn't any guarantee you will survive any procedure. Even getting a flu shot can be the root cause of someone's death.

Truthfully...... Do you really feel that Quality of Life should be the defining method? Would you just let someone like Stephen Hawking die from lack of treatment, because you feel they lack quality of life? I don't believe that is a choice the government should be making.

That then will lead to defining "Quality of Life" and attaching different levels to different levels of quality. Sigh....            Which means medical panels deciding who lives and who dies, based on their opinions.

RIP Charlie.

The same doctor when flown to the UK and after looking at Charlie's file clearly acknowledged that the scope of successful treatment for Charlie was limited. I would like to see a link to your claim about the doctor curing a similar case. And more importantly why this so called miracle doctor could raise the hopes of Charlie's parents without seeing Charlie firsthand. Problem is that everyone assumes that there is/was a conspiracy to purposely deny Charlie any meaningful medical help when nothing was further from the truth. The British health system employed its own experts to come to its conclusion. The parents refused to accept anything less that hope which was perfectly understandable even if selfish. 

Charlie received the best care possible. The parents should have said so even if they disagreed, instead they demonised the hospital and all those that tried to help Charlie.i acknowledge there are no guarantees in life but by the same token substituting common sense for snake oil type promises is not a genuine option. nor sensationalising Hawkins medical condition to illustrate your opinions. And it's got nothing to do with methods as they all vary like conditions. If Hawkins was incurable then he wouldn't be here and if Charlie stood half a chance then after 12 months of treatment and suffering he would be alive. 

 

 

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19 hours ago, DieChecker said:

I don't believe it was false hope. The doctor that flew to examine Charlie from New York had treated a similar child who is now 5 years old and has meaningful communication and movement.

Can you cite that?  Were the two cases comparable, and was there a genuine, medically sound case that the treatment would have/could have helped?

19 hours ago, DieChecker said:

Who are you to determine what hope is false, or not?

This is a non-argument.  Judgments are made every second of every day in regard to what is 'reasonable' hope.  Lifesavers will continue respiration/heart starting attempts only so many times, doctors will make decisions as to which patients to treat first in a disaster or war zone.  Even Joe average ie you and me, make decisions when driving our cars that involve choices that could be fatal if they are incorrect.  In the case of medical conditions, the people who ARE qualified are the doctors.  They are trained, they know what is a reasonable risk, they continuously, whether you want to turn your back on it or not, make life and death decisions all the time.  Some of those decisions will also be made on the basis of how to be fair with the available expenditure.

Our medical systems have improved our life expectancy hugely, many conditions are now treatable that were not before, but obviously we do not have infinite money.  Decisions have to be made, and most of them go on without us even being aware.  Sure, the system will make mistakes, but generally, I'd always accept the judgments of trained doctors over an emotional and untrained observer who does not appreciate the constraints on the system.  Wouldn't you? 

19 hours ago, DieChecker said:

You would be more then willing to sit on a panel that decides who lives and who dies and call letting people die Ethical?

Whether you like it or not, those panels exist and do exactly that job every day.  And yes, I think it is MORE than ethical - I think they do an amazing and thankless job.  One I would not be able to cope with, but I accept the need for it and thank them for taking (and wearing the consequences of) those often hard decisions.

19 hours ago, DieChecker said:

Guarantee? What guarantees are there in life. I went in for a simple chest surgery a year ago, and they had me sign all the wavers and whatnot... Because there isn't any guarantee you will survive any procedure. Even getting a flu shot can be the root cause of someone's death.

Truthfully...... Do you really feel that Quality of Life should be the defining method?

Yes.  YES a thousand times yes.  We are kinder to our pets than we are to our fellow humans.

19 hours ago, DieChecker said:

Would you just let someone like Stephen Hawking die from lack of treatment, because you feel they lack quality of life?

If he wanted to, or if he was so in need of specialist equipment or care that it would be costing an inordinate amount to taxpayers, then yes.  Why did you pick him, by the way - is he more important than someone of lesser intelligence, perhaps?

19 hours ago, DieChecker said:

I don't believe that is a choice the government should be making.

Private Enterprise then?  God?  A facebook poll?  Or perhaps a panel of trained experts who are aware of what can be done with a reasonable chance of success, and also the funding that is available versus other needs..  Gosh, which to choose...

19 hours ago, DieChecker said:

That then will lead to defining "Quality of Life" and attaching different levels to different levels of quality. Sigh...

So you don't make decisions about your quality of life and take actions to improve it?  Do you balance those decisions on as many factors as you can?  Are there times when you seek advice from experts?  Do you not see where I am going with this?

19 hours ago, DieChecker said:

Which means medical panels deciding who lives and who dies, based on their opinions.

Which is exactly what has always happened and will continue to happen.  Where better to put those decisions?

19 hours ago, DieChecker said:

RIP Charlie.

 

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3 hours ago, ChrLzs said:

Can you cite that?  Were the two cases comparable, and was there a genuine, medically sound case that the treatment would have/could have helped?

This is a non-argument.  Judgments are made every second of every day in regard to what is 'reasonable' hope.  Lifesavers will continue respiration/heart starting attempts only so many times, doctors will make decisions as to which patients to treat first in a disaster or war zone.  Even Joe average ie you and me, make decisions when driving our cars that involve choices that could be fatal if they are incorrect.  In the case of medical conditions, the people who ARE qualified are the doctors.  They are trained, they know what is a reasonable risk, they continuously, whether you want to turn your back on it or not, make life and death decisions all the time.  Some of those decisions will also be made on the basis of how to be fair with the available expenditure.

Our medical systems have improved our life expectancy hugely, many conditions are now treatable that were not before, but obviously we do not have infinite money.  Decisions have to be made, and most of them go on without us even being aware.  Sure, the system will make mistakes, but generally, I'd always accept the judgments of trained doctors over an emotional and untrained observer who does not appreciate the constraints on the system.  Wouldn't you? 

Whether you like it or not, those panels exist and do exactly that job every day.  And yes, I think it is MORE than ethical - I think they do an amazing and thankless job.  One I would not be able to cope with, but I accept the need for it and thank them for taking (and wearing the consequences of) those often hard decisions.

Yes.  YES a thousand times yes.  We are kinder to our pets than we are to our fellow humans.

If he wanted to, or if he was so in need of specialist equipment or care that it would be costing an inordinate amount to taxpayers, then yes.  Why did you pick him, by the way - is he more important than someone of lesser intelligence, perhaps?

Private Enterprise then?  God?  A facebook poll?  Or perhaps a panel of trained experts who are aware of what can be done with a reasonable chance of success, and also the funding that is available versus other needs..  Gosh, which to choose...

So you don't make decisions about your quality of life and take actions to improve it?  Do you balance those decisions on as many factors as you can?  Are there times when you seek advice from experts?  Do you not see where I am going with this?

Which is exactly what has always happened and will continue to happen.  Where better to put those decisions?

 

A brilliant post which covers all the main points. I'd be happy if the thread ended here, with such a logical and compassionate summary. 

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8 hours ago, Captain Risky said:

The same doctor when flown to the UK and after looking at Charlie's file clearly acknowledged that the scope of successful treatment for Charlie was limited. I would like to see a link to your claim about the doctor curing a similar case. And more importantly why this so called miracle doctor could raise the hopes of Charlie's parents without seeing Charlie firsthand. Problem is that everyone assumes that there is/was a conspiracy to purposely deny Charlie any meaningful medical help when nothing was further from the truth. The British health system employed its own experts to come to its conclusion. The parents refused to accept anything less that hope which was perfectly understandable even if selfish. 

Charlie received the best care possible. The parents should have said so even if they disagreed, instead they demonised the hospital and all those that tried to help Charlie.i acknowledge there are no guarantees in life but by the same token substituting common sense for snake oil type promises is not a genuine option. nor sensationalising Hawkins medical condition to illustrate your opinions. And it's got nothing to do with methods as they all vary like conditions. If Hawkins was incurable then he wouldn't be here and if Charlie stood half a chance then after 12 months of treatment and suffering he would be alive. 

I do agree, that after the doctor had looked at him, he thought Charlie was too far gone. However that doesn't change that the Hospital had said NO at every turn. There isn't any way to determine if the Hospital would have said Yes, if the doctor had said he could help Charlie.

I do agree Charlie had great care. However the choice to give him different care from a different source should NOT have been the hospitals choice to make. Maybe that is just me, however, but I think that once the government has the power of Life and Death over the citizens, that it is the citizens who will loose in the end.

I think the case I heard about is this one....

https://www.washingtonpost.com/national/health-science/family-carves-out-its-own-path-in-fight-against-4-year-olds-rare-disease/2015/09/04/7d18d8b0-2c91-11e5-a5ea-cf74396e59ec_story.html?utm_term=.baf49244b5ee

Quote

Arturo Estopiñan stands at his son’s bed, wearing a surgical mask and blue gloves. The boy, who has an extremely rare genetic disease that destroys muscles, has been unable to move or speak for three years.

Arturito was 1 when he was diagnosed with a disease caused by a disruption in the mitochondria, a part of the cell that supports growth. Only 83 such cases have ever been recorded. Doctors told his parents, Arturo and Olga, that there was no treatment and that he would die soon.

“They told us, ‘There’s no right or wrong answer — you don’t need to continue,’ ” Arturo said. “But we refused to take our son home to die. We will fight with him.”

Today, Arturito is enduring with the help of an experimental drug that only a handful of people in the world are taking.

Quote

Months after the diagnosis, the family contacted Michio Hirano, a New York neurologist at Columbia University Medical Center experimenting with a new medication, deoxynucleotide monophosphate, that significantly extended the life of mice that had been given the mutated gene.

An investigational drug such as this can be prescribed on a case-by-case basis under what is known as the Food and Drug Administration’s compassionate-use rule. Once Hirano and his staff filed the required paperwork, the FDA gave the green light within days and Arturito was transferred to New York for a month of treatment in 2012.

Arturito was the first person in the United States to have the therapy; at least three other Americans are trying to join him. Elsewhere, at least six are using the drug.

“It’s not a cure, but it is a treatment,” Hirano said. “It has modest benefits, and we’re working on ways to improve the therapy.”

 

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4 hours ago, ChrLzs said:

Can you cite that?  Were the two cases comparable, and was there a genuine, medically sound case that the treatment would have/could have helped?

https://www.washingtonpost.com/national/health-science/family-carves-out-its-own-path-in-fight-against-4-year-olds-rare-disease/2015/09/04/7d18d8b0-2c91-11e5-a5ea-cf74396e59ec_story.html?utm_term=.baf49244b5ee

Depends on what you call comparable. The symptoms were exactly the same. There are 6 other children being treated as of 2015. And the 4 year old who was being treated in the article is still alive today. The child in the article was diagnosed at around 1, so Charlie was obviously suffering from the condition before that point. 

Quote

This is a non-argument.  Judgments are made every second of every day in regard to what is 'reasonable' hope.  Lifesavers will continue respiration/heart starting attempts only so many times, doctors will make decisions as to which patients to treat first in a disaster or war zone.  Even Joe average ie you and me, make decisions when driving our cars that involve choices that could be fatal if they are incorrect.  In the case of medical conditions, the people who ARE qualified are the doctors.  They are trained, they know what is a reasonable risk, they continuously, whether you want to turn your back on it or not, make life and death decisions all the time.  Some of those decisions will also be made on the basis of how to be fair with the available expenditure.

Our medical systems have improved our life expectancy hugely, many conditions are now treatable that were not before, but obviously we do not have infinite money.  Decisions have to be made, and most of them go on without us even being aware.  Sure, the system will make mistakes, but generally, I'd always accept the judgments of trained doctors over an emotional and untrained observer who does not appreciate the constraints on the system.  Wouldn't you? 

BUT... If someone is already within a medical system, and their loved ones want to keep them on respiration and feeding, that can go on for a long, long time. If they have the money, then usually medicine will allow it.

If for example some "dies" while swimming in the river and the EMTs get there and fail to resuscitate, do they go, "Well, we have the heart paddles back in the Ambulance, but I think we'll just call this guy dead.". Or do they go get the paddles and try that too? Why does the London Hospital get to refuse Charlie's parents from getting the "paddles" used on their child? If you saw the EMTs with the heart paddles after they tried CPR, wouldn't you get a little hope out of it?

No one is arguing that choices don't have to made. But these parents had the money, the doctors, the treatment... all lined up. All the Hospital had to do was say, "OK".

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Whether you like it or not, those panels exist and do exactly that job every day.  And yes, I think it is MORE than ethical - I think they do an amazing and thankless job.  One I would not be able to cope with, but I accept the need for it and thank them for taking (and wearing the consequences of) those often hard decisions.

I do agree. And I think that those panels MUST.... MUST... Involve the choice of the loved ones. Do you think that ANY of those panels (in the US anyway) would refuse to even consider the opinions of the loved ones?

Quote

Yes.  YES a thousand times yes.  We are kinder to our pets than we are to our fellow humans.

Wow! So, if someone has a low quality of life, you are of the opinion we just allow them to die? Save some money?

Hopefully if you are ever in a bad spot, with costly treatments, you'll be living in a nation where you as a person is worth more then you as a cost savings.

Quote

If he wanted to, or if he was so in need of specialist equipment or care that it would be costing an inordinate amount to taxpayers, then yes.  Why did you pick him, by the way - is he more important than someone of lesser intelligence, perhaps?

I picked Hawking because he obviously contributes a great deal, while being almost completely helpless and unable to communicate outside of technology. Without technology, he'd just be a pile of skin, bones and a little meat, unable to move or speak.

And, by the way, Charlie's treatment was not going to be costing the taxpayers. The Hospital simply didn't want to let him go.

Quote

Private Enterprise then?  God?  A facebook poll?  Or perhaps a panel of trained experts who are aware of what can be done with a reasonable chance of success, and also the funding that is available versus other needs..  Gosh, which to choose...

I think a panel of experts along with the person's loved ones, if any. Just as we don't let our mechanics determine when we buy a new car, or what repairs we must make. We shouldn't let doctors determine what treatments, or lack of treatment, our loved ones should get without our input. AFAIK the Hospital stopped consulting with the parents after the parents started disagreeing with them. 

Quote

So you don't make decisions about your quality of life and take actions to improve it?  Do you balance those decisions on as many factors as you can?  Are there times when you seek advice from experts?  Do you not see where I am going with this?

I do. I am agreeing with you. We all have to balance our resources. However, again, Charlie was offered the resources that he would need and the Hospital (and the UK overall) wouldn't lose a single pound.

You do know you are on the side of handing over your life to the government? Is that really what you want to be defending? 

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Which is exactly what has always happened and will continue to happen.  Where better to put those decisions?

In the hands of the loved ones. The panel should Advise, but not Decide. 

Should the Dean of a University determine where the graduating students should work? He's the expert, right? 

Should the pilot of an airplane determine where each person should sit on the plane? Why not? He's the expert...

Should the President of the United States determine who gets to be banned from the nation, and who gets special contracts and favors? He's the expert...

Should we really leave things to the experts to Decide, or should the People decide while being Advised by the experts?

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