Charlie Gard

gimmesometruth27

from the article.

"It is also hugely difficult for any clinically-trained professional to be asked to treat a child who has no chance of survival or even improvement in his quality of life", the hospital added.

Thirty Bills Unpaid

unsung said:

I don't care if it takes 100 opinions, it should be the decision of the parents to cease treatment, not the courts.

If it's not costing the government anything and the financial burden rests solely on the parents... I would agree with this.

If it was my child... I'd go to the ends of the universe before throwing in the towel. And I'd be prepared to live with the aftermath as well (financial ruin being one of them).

gimmesometruth27

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

gimmesometruth27

to the people angry about this, where did you stand on terri schiavo?

Thirty Bills Unpaid

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

rgambs

Thirty Bills Unpaid said:

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
They are trying to protect him from his parents, who want to prolong his suffering.

I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.

gimmesometruth27

Thirty Bills Unpaid said:

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

the courts did not decide to pull the plug. they upheld the opinion of the doctors that that treatment is experimental and most likely would not help. there is no saving this child and there is no hope for improvement. this is a mitochondrial disorder. this is not fake news. this is reality.

to me, unsung's intent was to say that this is what is going to happen in america if we adopt a single payer system. what happened in this case is rare, even by european standards. this is the exception and not the rule.

as it is here now in america, insurance is the one that decides on care. doctors want to try things and insurance companies deny things as experimental. this is my career. i deal with this shit on a daily basis. in america it is not the government getting in between patients and doctors. it is the insurance company doctors doing that. 

Thirty Bills Unpaid

rgambs said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
They are trying to protect him from his parents, who want to prolong his suffering.

I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.

Fair enough. I guess I keep looking at it from the parents' perspective.

gimmesometruth27

the parents need to accept the reality of their situation. there would be more dignity in it. 

if that makes me sound cold, i am sorry. but this is the reality they are in.

Thirty Bills Unpaid

gimmesometruth27 said:

the parents need to accept the reality of their situation. there would be more dignity in it. 

if that makes me sound cold, i am sorry. but this is the reality they are in.

We are on the sidelines though.

The parents are not evil here (and I know this is not what you are implying). They are just broken and desperate.

Bentleyspop

rgambs said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
They are trying to protect him from his parents, who want to prolong his suffering.

I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.

Exactly!!
This  is very selfish behavior on the part of the parents.
Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.

gimmesometruth27

Thirty Bills Unpaid said:

gimmesometruth27 said:

the parents need to accept the reality of their situation. there would be more dignity in it. 

if that makes me sound cold, i am sorry. but this is the reality they are in.

We are on the sidelines though.

The parents are not evil here (and I know this is not what you are implying). They are just broken and desperate.

working in medicine, i get it. but at some point they must realize that they are not helping their child. they are tying up resources that could be used to help other people who have a better prognosis.

we look at medical facts and make decisions accordingly. emotions have to be taken out of it.

Thirty Bills Unpaid

Bentleyspop said:

rgambs said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
They are trying to protect him from his parents, who want to prolong his suffering.

I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.

Exactly!!
This  is very selfish behavior on the part of the parents.
Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.

I wouldn't describe it like this at all.

Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.

gimmesometruth27

Thirty Bills Unpaid said:

Bentleyspop said:

rgambs said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
They are trying to protect him from his parents, who want to prolong his suffering.

I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.

Exactly!!
This  is very selfish behavior on the part of the parents.
Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.

I wouldn't describe it like this at all.

Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.

you are thinking about this emotionally, not rationally.

Thirty Bills Unpaid

gimmesometruth27 said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

the parents need to accept the reality of their situation. there would be more dignity in it. 

if that makes me sound cold, i am sorry. but this is the reality they are in.

We are on the sidelines though.

The parents are not evil here (and I know this is not what you are implying). They are just broken and desperate.

working in medicine, i get it. but at some point they must realize that they are not helping their child. they are tying up resources that could be used to help other people who have a better prognosis.

we look at medical facts and make decisions accordingly. emotions have to be taken out of it.

So we are deciding the point at which they should get it?

Maybe. 

I just see their perspective and I think it's a fine line where parents in such cases are told to give up.

* I'm in agreement with the decision. I'm just not quite sure I'm right being in agreement with the decision. This isn't as cut and dry as it's made out to be.

oftenreading

Unsung, where do you stand when courts intervene to save the life of a child when the parents' beliefs cause them to refuse necessary, life saving treatment, such as JWs who refuse transfusions on religious grounds, or parents who believe "alternative medicine" will cure cancer? You're against court intervention in those cases, too? 

Thirty Bills Unpaid

gimmesometruth27 said:

Thirty Bills Unpaid said:

Bentleyspop said:

rgambs said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
They are trying to protect him from his parents, who want to prolong his suffering.

I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.

Exactly!!
This  is very selfish behavior on the part of the parents.
Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.

I wouldn't describe it like this at all.

Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.

you are thinking about this emotionally, not rationally.

Is a cure 100% out of the realm of possibility?

We just spoke to the genius of prosthetics linked to nervous systems.

gimmesometruth27

Thirty Bills Unpaid said:

gimmesometruth27 said:

Thirty Bills Unpaid said:

Bentleyspop said:

rgambs said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
They are trying to protect him from his parents, who want to prolong his suffering.

I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.

Exactly!!
This  is very selfish behavior on the part of the parents.
Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.

I wouldn't describe it like this at all.

Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.

you are thinking about this emotionally, not rationally.

Is a cure 100% out of the realm of possibility?

We just spoke to the genius of prosthetics linked to nervous systems.

yes. based on the findings of these doctors, a cure is 100% out of the realm of possibility. otherwise they would have granted them permission to travel for the experimental treatment. with that treatment, the best case scenario is the kid carries on in the state that he is in. unconscious, unable to breathe on his own, unable to eat and drink on his own, unable to walk, etc. just alive, but not really living.

worst case scenario, the family flies a corpse along with feeding machine and ventilator back to england. 

look up genetic mitochondrial disorders. some are treatable. the ones that are treatable, the kids are either on oxygen or feeding tubes and wheelchair bound for their entire short lifespan. this is not something that i would want for my kid or any kid to have to live with.

prosthetics are one thing. mitochondria is what provide energy to cells for cells, tissues, and organs to function properly. if you have a major problem with something at the cellular level, you are in huge trouble. the cellular level is where everything happens. it is the base of the house of cards. you pull a card from the base and the whole thing is unable to stand.

gimmesometruth27

Thirty Bills Unpaid said:

gimmesometruth27 said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

the parents need to accept the reality of their situation. there would be more dignity in it. 

if that makes me sound cold, i am sorry. but this is the reality they are in.

We are on the sidelines though.

The parents are not evil here (and I know this is not what you are implying). They are just broken and desperate.

working in medicine, i get it. but at some point they must realize that they are not helping their child. they are tying up resources that could be used to help other people who have a better prognosis.

we look at medical facts and make decisions accordingly. emotions have to be taken out of it.

So we are deciding the point at which they should get it?

Maybe. 

I just see their perspective and I think it's a fine line where parents in such cases are told to give up.

* I'm in agreement with the decision. I'm just not quite sure I'm right being in agreement with the decision. This isn't as cut and dry as it's made out to be.

i see the parents' perspective too. but there is a time when someone who does not want to believe a prognosis has to accept that prognosis and stop living in denial.

Thirty Bills Unpaid

gimmesometruth27 said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

Thirty Bills Unpaid said:

Bentleyspop said:

rgambs said:

Thirty Bills Unpaid said:

gimmesometruth27 said:

the family is in denial. 

this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.

I hear you. But I also hear what Unsung is saying.

As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.

The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
They are trying to protect him from his parents, who want to prolong his suffering.

I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.

Exactly!!
This  is very selfish behavior on the part of the parents.
Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.

I wouldn't describe it like this at all.

Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.

you are thinking about this emotionally, not rationally.

Is a cure 100% out of the realm of possibility?

We just spoke to the genius of prosthetics linked to nervous systems.

yes. based on the findings of these doctors, a cure is 100% out of the realm of possibility. otherwise they would have granted them permission to travel for the experimental treatment. with that treatment, the best case scenario is the kid carries on in the state that he is in. unconscious, unable to breathe on his own, unable to eat and drink on his own, unable to walk, etc. just alive, but not really living.

worst case scenario, the family flies a corpse along with feeding machine and ventilator back to england. 

look up genetic mitochondrial disorders. some are treatable. the ones that are treatable, the kids are either on oxygen or feeding tubes and wheelchair bound for their entire short lifespan. this is not something that i would want for my kid or any kid to have to live with.

prosthetics are one thing. mitochondria is what provide energy to cells for cells, tissues, and organs to function properly. if you have a major problem with something at the cellular level, you are in huge trouble. the cellular level is where everything happens. it is the base of the house of cards. you pull a card from the base and the whole thing is unable to stand.

Damn