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Message
Charlie Gard- Right to Die & Socialized Medicine
Posted on 6/29/17 at 9:54 am
Posted on 6/29/17 at 9:54 am
LINK
Apologies if this has been posted, but I feel this warrants a discussion on this legal standard and a by-product of socialized medicine where the state ultimately is the chief decision maker in allocating healthcare resources. Pretty disgusting.
eta. Another good take
Apologies if this has been posted, but I feel this warrants a discussion on this legal standard and a by-product of socialized medicine where the state ultimately is the chief decision maker in allocating healthcare resources. Pretty disgusting.
eta. Another good take
This post was edited on 6/29/17 at 9:56 am
5
Posted on 6/29/17 at 9:56 am to LSUminati
Good topic, I was looking for a thread on it earlier.
I blew off the story originally because I thought the family was upset that NHS wouldn't pay for experimental treatment (admittedly hadn't seen much).
But the summary is that they have the money, but the hospital (government) won't cooperate in allowing him to go to the US for experimental treatment - is that correct?
I blew off the story originally because I thought the family was upset that NHS wouldn't pay for experimental treatment (admittedly hadn't seen much).
But the summary is that they have the money, but the hospital (government) won't cooperate in allowing him to go to the US for experimental treatment - is that correct?
Posted on 6/29/17 at 10:01 am to Pettifogger
quote:
But the summary is that they have the money, but the hospital (government) won't cooperate in allowing him to go to the US for experimental treatment - is that correct?
That is correct. They were neither trying to compel these particular physicians to treat their son, nor were they insisting that treatment be provided at a cost to the state. I believe they actually raised most of the money through charitable donations (!). There was a doctor in the U.S. willing to treat the son and the hospital would not release him because they believed, admittedly in their valid medical opinion, that is wasn't in the best interest of the patient. The validity of their opinion is not the point, though.... anyway because of "right to die," this decision of the physicians was dispositive as a proxy for the child.
Posted on 6/29/17 at 10:06 am to LSUminati
I'll read more when I have time, but just to contribute general thoughts:
-I'm only sympathetic to the government's position if the experimental treatment in the US is some batshit crazy stuff, and prolonging life for that step is only going to make the boy's final days more unpleasant.
-As a caveat, I disfavor government overruling decisions of parents as a general rule. That said, since the UK has long ago decided to cede medical decision making to the government, if this treatment was going to harm the child or make his life more painful, I probably wouldn't protest the decision too loudly. I fundamentally disagree with the way that decision is made, but it's not my country or government.
-I do think some of the reporting (what little I've seen) is overkill and exaggerated in its rhetoric. Claims that the UK is sentencing him to die are only tinged in truth if he has a real chance to survive, which he probably does not. But, I still think it's absurd that the government won't let parents with means to seek last-ditch treatment do so.
-I'm only sympathetic to the government's position if the experimental treatment in the US is some batshit crazy stuff, and prolonging life for that step is only going to make the boy's final days more unpleasant.
-As a caveat, I disfavor government overruling decisions of parents as a general rule. That said, since the UK has long ago decided to cede medical decision making to the government, if this treatment was going to harm the child or make his life more painful, I probably wouldn't protest the decision too loudly. I fundamentally disagree with the way that decision is made, but it's not my country or government.
-I do think some of the reporting (what little I've seen) is overkill and exaggerated in its rhetoric. Claims that the UK is sentencing him to die are only tinged in truth if he has a real chance to survive, which he probably does not. But, I still think it's absurd that the government won't let parents with means to seek last-ditch treatment do so.
Posted on 6/29/17 at 10:16 am to Pettifogger
Fair takes
Posted on 6/29/17 at 10:26 am to Pettifogger
quote:
-I'm only sympathetic to the government's position if the experimental treatment in the US is some batshit crazy stuff, and prolonging life for that step is only going to make the boy's final days more unpleasant.
quote:
But, I still think it's absurd that the government won't let parents with means to seek last-ditch treatment do so.
Excellent post, I notice in the article they mentioned Schiavo case as well.
Posted on 6/29/17 at 10:32 am to Pettifogger
My question is had he been accepting into the experimental treatment or were they hoping to get him accepted?
Charlie's parents, from Bedfont, west London, raised £1.3m on a crowdfunding site to pay for the experimental treatment in the US.
Ms Yates had already indicated the money would go towards a charity for mitochondrial depletion syndromes if Charlie did "not get his chance".
"We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
"If Charlie doesn't get this chance, we will make sure that other innocent babies and children will be saved", she said. LINK
Charlie's parents, from Bedfont, west London, raised £1.3m on a crowdfunding site to pay for the experimental treatment in the US.
Ms Yates had already indicated the money would go towards a charity for mitochondrial depletion syndromes if Charlie did "not get his chance".
"We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
"If Charlie doesn't get this chance, we will make sure that other innocent babies and children will be saved", she said. LINK
Posted on 6/29/17 at 10:33 am to LSUminati
This is a hard decision, no doubt about it. Understandably the parents want to keep the child alive as long as possible. But is anyone considering what is best for the child? What quality of life does he have now, tied to all those life-sustaining devices? And to what level of life sustainability does the U.S. doctor hope to achieve?
If the U.S. doctor's experimental treatment does not work, the baby will be in a U.S. hospital where life ending decisions will have to be made. If the parents insist on keeping the baby alive at all costs and their money runs out, the hospital cannot throw the baby out and the hospital and U.S. taxpayers will face a long court battle.
I think the baby's welfare should be the main thing considered. Not extensively prolonging his suffering
would be the humane thing to do. Grasping at straws using the baby as a pawn is selfish on the parents part, but I can understand why they want to do this.
Many times life is not fair.
If the U.S. doctor's experimental treatment does not work, the baby will be in a U.S. hospital where life ending decisions will have to be made. If the parents insist on keeping the baby alive at all costs and their money runs out, the hospital cannot throw the baby out and the hospital and U.S. taxpayers will face a long court battle.
I think the baby's welfare should be the main thing considered. Not extensively prolonging his suffering
would be the humane thing to do. Grasping at straws using the baby as a pawn is selfish on the parents part, but I can understand why they want to do this.
Many times life is not fair.
Posted on 6/29/17 at 10:36 am to Jbird
It appears he was accepted for treatment.
quote:LINK
After endlessly researching and speaking to Dr’s all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn’t been tried on anyone with his gene before (he’s only number 16 in the world ever reported) but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar – it’s helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.
Posted on 6/29/17 at 10:49 am to Jbird
Yeah reports I saw noted he'd been accepted, but I haven't dug into whether it seems promising (we may not be able to discern that at all).
It's disturbing and I'm sure the parents feel helpless.
It's disturbing and I'm sure the parents feel helpless.
Posted on 6/29/17 at 10:52 am to LSUminati
quote:Indeed. It's cruelty at its highest level. Government will ultimately decide if someone without a job, and no social value has enough value to treat.
by-product of socialized medicine where the state ultimately is the chief decision maker in allocating healthcare resources. Pretty disgusting.
How much is an 80-year old's life worth to society?. Cleary not very much.
People will argue that by have value to their families. True. But look how many don.'t want to sacrifice to take care of grandma. They want "someone else" (aka government) to do it for them
No way I want the value of my life based on its net worth to society. No rational person would.
ETA: is isn't article I thought it was.
This post was edited on 6/29/17 at 11:01 am
Posted on 6/29/17 at 10:55 am to Pettifogger
quote:Yeah it's odd there isn't any reporting on what this doctor in the U.S. thought.
Yeah reports I saw noted he'd been accepted, but I haven't dug into whether it seems promising (we may not be able to discern that at all).
quote:They seem to be handling it with grace, tough position for any parent.
It's disturbing and I'm sure the parents feel helpless.
This post was edited on 6/29/17 at 10:56 am
Posted on 6/29/17 at 11:04 am to oldtimefootball
quote:
But is anyone considering what is best for the child?
There is no one more qualified than a parent to decide what is best for the child. They don't always decide what is best for the child. But there's no one more qualified. The government is never a good proxy (absent a previous court order judging the parents to be unfit, and to be clear, not a court order which arises as a byproduct of the medical decision making process) for decisions for the child's welfare.
Posted on 6/29/17 at 11:07 am to LSUminati
Am I missing something here? The UK Government is saying that these parents can't bring their child to one of the 10-15 premier healthcare countries in the world for privately funded treatment?
Wow.
Anyone that supports single-payer needs to read this and strongly reconsider.
Wow.
Anyone that supports single-payer needs to read this and strongly reconsider.
Posted on 6/29/17 at 11:54 am to Golfer
quote:
Am I missing something here? The UK Government is saying that these parents can't bring their child to one of the 10-15 premier healthcare countries in the world for privately funded treatment?
Essentially, that's the result. The basis of the decision is the "right to die" principle, but the delegation of decision-making authority from parent to physician attendant with socialized healthcare was the impetus.
This post was edited on 6/29/17 at 11:54 am
Posted on 6/29/17 at 12:09 pm to Jbird
quote:
but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar – it’s helping children to get their strength back and live longer!
The 'accepting' doctor was backing down because he said that the parents misrepresented how sick the child was.
The little boy has no functioning mitochondria in his body. The very sad picture of him with his eyes open have his pupils totally dilated on a sunny day. The pictures of him'holding' his toy have his hand placed over his toy, never grasping it or his parents fingers.
Can any therapy regrow millions of mitochondria? Much less regrow a brain?
English people donated a lot of money. They talked about giving the lovely little boy a chance. IMO that chance was taken from him by genetics. Once the mitochondria died, they stayed dead.
Then the pictures started appearing of the lovely little boy he had been. And they kept getting released and re-released. And these confused many good people.
If you remove a ventilator are you killing someone? Or are you stopping your intrusion into what had been a slow and possibly painful death?
Posted on 6/29/17 at 12:12 pm to real turf fan
quote:Do you have a link?
The 'accepting' doctor was backing down because he said that the parents misrepresented how sick the child was.
quote:Yeah this isn't an easy situation I agree.
If you remove a ventilator are you killing someone? Or are you stopping your intrusion into what had been a slow and possibly painful death?
In your opinion who should make the call, the parents or the courts?
Posted on 6/29/17 at 12:55 pm to Jbird
Several months ago, the hesitancy of the US doctors was mentioned in English newspapers. Since then, not much (and google news search seems strangely limited.
This kind of comment, from someone who donated to them after the Strassburg decision
tells me that there are people out there who think that every sickness has a cure.
The care this child needs doesn't exist. Can someone deserve something that doesn't exist? I don't think so, but there are many who seem to be working on the assumption that the cure is in North America if only the parents can deliver the child to the US. And that just isn't realistic.
The Father calls the child my boy, and pictures appear of the Father proudly holding his son, back when his son's eyes could open and the child could eat and smile and do baby things. That was so many months ago. But the child attached to machines with no apparent responses is today.
I'm one of many who have made the decision not to prolong the life of a family member in pain and with no hope of cure. I could have placed my Father on a breathing machine and kept him comatose. I knew that that was not how he wanted to go because we'd talked about it.
The British legal system intervened on behalf of the child, when the parents seemed to be making decisions that weren't in the best interest of their child. Keeping the child breathing artificially. Keeping the child nourished artificially. Keeping cells alive when the main energy 'center' of the cell, each cell, no longer functions...... Nor can those mitochondria ever be replaced throughout the child's entire body.
Is it "right" to experiment on a child's body?
This kind of comment, from someone who donated to them after the Strassburg decision
quote:
“My heart goes out to you during this crucial time. Prayers are coming your way. I pray God changes the hearts of the doctors to allow Charlie to get the care he needs and deserves.”
tells me that there are people out there who think that every sickness has a cure.
The care this child needs doesn't exist. Can someone deserve something that doesn't exist? I don't think so, but there are many who seem to be working on the assumption that the cure is in North America if only the parents can deliver the child to the US. And that just isn't realistic.
The Father calls the child my boy, and pictures appear of the Father proudly holding his son, back when his son's eyes could open and the child could eat and smile and do baby things. That was so many months ago. But the child attached to machines with no apparent responses is today.
I'm one of many who have made the decision not to prolong the life of a family member in pain and with no hope of cure. I could have placed my Father on a breathing machine and kept him comatose. I knew that that was not how he wanted to go because we'd talked about it.
The British legal system intervened on behalf of the child, when the parents seemed to be making decisions that weren't in the best interest of their child. Keeping the child breathing artificially. Keeping the child nourished artificially. Keeping cells alive when the main energy 'center' of the cell, each cell, no longer functions...... Nor can those mitochondria ever be replaced throughout the child's entire body.
Is it "right" to experiment on a child's body?
Posted on 6/29/17 at 1:04 pm to real turf fan
quote:No I understand your point completely. I however feel a little leery of potential abuses by politically appointed people.
Is it "right" to experiment on a child's body?
Posted on 6/29/17 at 3:08 pm to real turf fan
quote:
it "right" to experiment on a child's body?
No.
Is it right for the government to make end of life decisions for the family?
No.
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