This has been in the national news for quite sometime. Long and short of it, Charlie has a disease of the mitochondria which is more or less terminal. There was a new expirimental treatment in America. A page was set up which raised over £1,000,000 to fund the treatment. However the NHS at Saint Ormonds Street Hospital saw that the treatment had a very small chance of success and went to court over ending his treatment and letting him die. This was back in April.
Today, the parents finally dropped the case after hearing that his disease was too far gone to be healed.
What are your thoughts on this? I know this is a very sensitive subject and has divided a lot of people, but I side with the hospital. The treatment was so unlikely to succeed, and even if it did, he'd probably live his life with no senses of any kind.
I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.
Howard A Treesong wrote: I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.
The baby. The baby would be benefiting from this because it could continue to be alive. Then there are others that would benefit from the information gained from the treatment of said baby.
Why is a hospital stepping in to prevent care to a patient?
Howard A Treesong wrote: I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.
The baby. The baby would be benefiting from this because it could continue to be alive. Then there are others that would benefit from the information gained from the treatment of said baby.
Why is a hospital stepping in to prevent care to a patient?
Indeed. It was totally immoral for the hospital and government to prevent him from receiving this experimental treatment. They have ZERO business in deciding when to pull the plug, that should have been solely the parents decision.
This is the problem when the government gets involved in controlling its citizens lives too much. This was infact, a dreaded "Death Panel". Even worse is that they did it when there was a potential treatment option available. You should only consider pulling the plug when all options are exhausted, and even then it should be the parents decision. Not the hospital or the government.
The people who made this decision should be tried for murder and/or denial of medical treatment. They broke the Hippocratic oath at the very least.
Can't he be treated? Charlie's parents, Connie Yates and Chris Gard, from Bedfont in west London, want Charlie to have an experimental treatment called nucleoside therapy.
A hospital in the US has agreed to offer Charlie the treatment, and Charlie's parents have raised funds to take him there.
Connie Yates and Chris Gard raised more than £1.3m for experimental treatment for Charlie
But Charlie's doctors at GOSH do not think this is the right care for Charlie.
They say they have explored various treatment options, including nucleoside drug therapy, and none would improve Charlie's quality of life.
They say Charlie's life support should be switched off and he should be allowed to die.
How did Charlie's doctors reach this decision? Charlie's doctors say his brain is extensively damaged at a cellular level.
They say the US clinician offering the experimental treatment agrees it will not reverse this brain damage.
GOSH applied to the High Court for judges to decide Charlie's future.
The High Court agreed with the GOSH doctors.
Charlie's parents then appealed against the decision, but courts ruled that the original decision should stand and that it would be in Charlie's best interests to be allowed to die with dignity.
Howard A Treesong wrote: I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.
The baby. The baby would be benefiting from this because it could continue to be alive. Then there are others that would benefit from the information gained from the treatment of said baby.
Why is a hospital stepping in to prevent care to a patient?
The NHS is under massive financial constraints and cutbacks.
They'll have guidelines for when the cost of a patient's treatment is going to provide negligible benefit to them.
That cost can be spent elsewhere.
As a purely money-based decision, in a dwindling budget, they will have to cut treatment at some point.
These parents will want their child to live, no matter how disabled he might be. But, unless they can fund his treatment privately (and it seems they might have been able to), this may be where the hospital were trying to deal with the parents' loss, as well as helping the child.
Howard A Treesong wrote: I felt that they were dragging out his suffering, incredibly experimental treatment for a baby already severely brain damaged, serious mental and physical disability, who is really benefiting from this? I appreciate the parents' suffering, but sometimes you've got to let someone go.
The baby. The baby would be benefiting from this because it could continue to be alive. Then there are others that would benefit from the information gained from the treatment of said baby.
Why is a hospital stepping in to prevent care to a patient?
The NHS is under massive financial constraints and cutbacks.
They'll have guidelines for when the cost of a patient's treatment is going to provide negligible benefit to them.
That cost can be spent elsewhere.
As a purely money-based decision, in a dwindling budget, they will have to cut treatment at some point.
These parents will want their child to live, no matter how disabled he might be. But, unless they can fund his treatment privately (and it seems they might have been able to), this may be where the hospital were trying to deal with the parents' loss, as well as helping the child.
They privately raised money for the treatment. So this is a bad argument.
Edit: Actually, I reread that and it is a bad argument for more reasons than that. "As a purely money-based decision, in a dwindling budget, they will have to cut treatment at some point." This, in a single payer system, should never be a thing. The only time there should be a line drawn on when to cut treatment is when the child's heart stops. Quality of Life is not an argument for letting a person die, as LIFE always has more quality than DEATH.(If a person wishes to die, that is a different scenario) Money should never be a part of the equation, because where/when do we draw that line? Is a rich persons life more important than a poor persons? Are we more aggressive with treatment because Bill can make a large donation to the hospital if we save him?
These are awful ways to argue about the life of a person.
Dreadwinter wrote: They privately raised money for the treatment. So this is a bad argument.
It will have been the ongoing costs they were looking at, too. Not just the initial treatment, but the level of care Charlie will have had to have for the rest of his life. That would have been far more than was raised.
Problems came. The drug in question had not even seen a lab rat test In Charlies condition.
This was not even rat tested if true, on the less severe version I had but there was zero testing on his exact condition if one article true.
Plus would not reverse the brain or sensory damage already done months ago. Even if it work he be stuck on some machines for rest of life and brain damage cannot be reversed. The quality of life must be considered that Charlie would of had.
Sadly I believe there is a reason the judge made the choice he did.
Dreadwinter wrote: They privately raised money for the treatment. So this is a bad argument.
It will have been the ongoing costs they were looking at, too. Not just the initial treatment, but the level of care Charlie will have had to have for the rest of his life. That would have been far more than was raised.
And? All three people involved are citizens of the UK and should be covered for that, correct?
Skinnereal wrote: It will have been the ongoing costs they were looking at, too. Not just the initial treatment, but the level of care Charlie will have had to have for the rest of his life. That would have been far more than was raised.
All the money in the world wouldn't have helped to give the baby any more life than being a package in a hospital. He never had a chance even if generous donors thought the American researcher might have a miracle cure. I'm sorry for the parents but this wasn't ever going to help.
What they can do, though, is put the donations into a fund to research this particular condition. A million+ is a lot of cash, maybe enough that the cure saving future babies could be named for Charlie.
Skinnereal wrote: It will have been the ongoing costs they were looking at, too. Not just the initial treatment, but the level of care Charlie will have had to have for the rest of his life. That would have been far more than was raised.
All the money in the world wouldn't have helped to give the baby any more life than being a package in a hospital. He never had a chance even if generous donors thought the American researcher might have a miracle cure. I'm sorry for the parents but this wasn't ever going to help.
What they can do, though, is put the donations into a fund to research this particular condition. A million+ is a lot of cash, maybe enough that the cure saving future babies could be named for Charlie.
It can go to help fund the cure on the releated condition and his. That is proven and has worked, with testing maybe adapted to help. But it needs testing, its not even entered lab stage.
However, the one he sadly got, has been classed as Terminal, and whatever we do at current is just buying time at current.
None of us have anything close to the expertise to discuss this intelligently.
As general rules, though, I think doctors should trump parents in care decisions, and whether allowing someone to die is the right choice or not is, for me, entirely down to level of discomfort they are in. Unfortunately, expert opinion on the level of discomfort Charlie Gard was in ranges from zero to extreme.
Indeed. It was totally immoral for the hospital and government to prevent him from receiving this experimental treatment. They have ZERO business in deciding when to pull the plug, that should have been solely the parents decision.
It has nothing to do with the government. You need to get a bit more familiar with what has happened rather than jumping straight into the EVIL SOCIALIST DEATH PANEL HEALTHCARE like all the US Twitter stereotypes are doing. Just need to tick off the NHS would have killed Stephen Hawking box on my bingo card.
They broke the Hippocratic oath at the very least.
I'd argue that artificially prolonging the life of someone who is suffering and getting worse is doing harm.
Charlie was beyond saving. The idea of being alive is better than being dead I don't hold to. With his level of brain damage he had no chance. It is sad and breaks my heart for what the poor family will be going through.
But in my opinion the judge is correct. But also in my opinion the judge should never have been involved. They raised the money they should been allowed to try. I doubt it will have achieved anything but it may have advanced the knowledge base for this disease
The two arguments on either side of this case are pretty simple:
As long as somebody cares and has hope despite the evidence showing there is no hope, all resources should be given to that person. Be companionate, no matter the price.
Once there is no hope, all time and resources spend on that patient are a waste and take away the time and resources spend on patients that could actually benefit from them. Cut your losses and move on.
And every case, and the way people view those cases, falls somewhere along the line between those two realities.
I'm with the courts on this. It's a tragedy that the kid had the illness, and an even greater one that they weren't given the merciful option. I understand the parent's grief, but no amount of throwing money can prevent death or a severely stunted quality of life.
I believe anyone levelling the GOST doctors with death threats is a hypocrite, and is incredibly wrong.
Any money raised can be used by the family for their own sake, but I think for the reason it was donated, it should be put into research for the illness. We can move on as best we can from this, and work towards preventing/curing it in the future.
I feel that parents need to listen to experts. Those properly qualified.
Perhaps the treatment works, perhaps it doesn't. But you have to think of the quality of life after the procedure.
And I say this as a beneficiary of quite revolutionary treatment. I short, I was born in 1980, and my stomach didn't have a plughole. Owt you put into me, came straight back up.
After a mere two weeks of life, I had keyhole surgery to more or less poke a plughole in my tummy. And now I'm a 6'2" monstrosity.
Had I been born a year or two earlier, I'd have been toast. So medical science can absolutely work miracles, but parents need to be ready to let go. I know this sounds harsh, but put aside your ego and think of the sprog. If like me there's a chance they can go on to live a full life, then absolutely fight for that.
But if it's a case of 'well they'll probably, maybe, ish' live to see their fifth year? What's the point? You're only extending their pain to assuage and put off your own grief a few years.
It is also worth to note that this same thing happens every day in hospitals around the world, including the US.
It's not even about "is this a waste of money" as it is often portrayed. It's about the ethical issue of "are you treating the patient" vs "are you treating the family and prolonging the suffering of the patient or keeping a corpse alive for their sake".
I've also taken care of way to many people that were the victims of family members who were emotionally unable to deal with the reality that was facing them. I've had to stand up to many family members who tried to bully the patient into making different decisions. I've had lawsuits threatened against me because I made sure the patient was able to use her voice, because the family was not ready for reality even though she was. It's hard enough to do when the patient is able to speak for him or herself. It's even harder to do when the patient does not have anybody speaking on his or her behalf. At some point someone needs to speak for the patient and think "what is best for him and what would he want".
Every article is talking about how hard this is for the parents, but the hard cold reality is that the emotional well being of the parents doesn't matter one single bit. It's the patient that matters and that's the only thing that matters. You don't do anything to a patient just because it will make a family member feel better. That's the problem in a lot of medicine.
There are a lot of bodies with zero quality of life who are suffering for years hooked up to machines while their body is slowly shutting down, for the simple reason that a family member is saying "I am not ready to deal with this reality yet and I'm not ready to have a dead parent". So we shrug our shoulders and say "sorry lady, gotta suffer because we don't want your daughter to be sad". Because the person who has a voice is using that voice for herself, while the patient remains voiceless.
It's easy to judge the actions of panels who make these decisions, but it's hard to actually be on them and make the decisions. The best thing that can come out of this is to realize that we need a system that is able to give a better voice to those without one, and to realize that family members are not the patient.
Severe brain damage, unable to move arms or legs or open eyes, seizures, epilieptic encephalopathy? Even if the kid survived, he'd be a complete vegetable for whatever life he'd have even if the treatment was successful, which was always extremely doubtful. The US doctor who was willing to treat the kid said as much.
Doctors made the right call. Parents were clutching at straws, understandably so, but lets be real about that.
If the kid could have had a real life then even at a million to one odds I'd have said go for it, absolutely. Given that he was facing a million to one odds simply to continue existence in only the most technical of sense of the word, I'm on the side of the doctors here.
I hope if I am ever in that situation, where even if a long shot treatment worked but I'd still be a veggie, someome just pulls my plug instead.
Vaktathi wrote: Severe brain damage, unable to move arms or legs or open eyes, seizures, epilieptic encephalopathy? Even if the kid survived, he'd be a complete vegetable for whatever life he'd have even if the treatment was successful, which was always extremely doubtful. The US doctor who was willing to treat the kid said as much.
Doctors made the right call. Parents were clutching at straws, understandably so, but lets be real about that.
If the kid could have had a real life then even at a million to one odds I'd have said go for it, absolutely. Given that he was facing a million to one odds simply to continue existence in only the most technical of sense of the word, I'm on the side of the doctors here.
I hope if I am ever in that situation, where even if a long shot treatment worked but I'd still be a veggie, someome just pulls my plug instead.
That's the thing, we have reached a stage where we can prolong life, and treat to a degree where we ethically need to work out where we stop.
Sure wr could of kept Charlie alive for 5 years maybe on machines etc, but is that in his best interest? Is ot truely a life we would want anyone to live ?
At that stage parents are overidden by Doctors pegrogrtive, and they need to discuss the pro, cons, and the medical ethics behind the case and make a multi disapliney decision based on all facts on what is the best thing for yhr patient in question, not just the parents. They have a part but Doctors, they ate the professionals in this situation.
Vaktathi wrote: Severe brain damage, unable to move arms or legs or open eyes, seizures, epilieptic encephalopathy? Even if the kid survived, he'd be a complete vegetable for whatever life he'd have even if the treatment was successful, which was always extremely doubtful. The US doctor who was willing to treat the kid said as much.
And the treatment they had in mind wasn't near the stage where human testing would be the next step.
I don't agree that he baby Charlie would be benefiting from this. I don't believe that any form of life is better than no life, when you are a crippled vegetable on life support with no long term prospects. When I asked who benefits, I believe it's the conscience of the parents I think is coming first, not the genuine wellbeing of the patient.
jhe90 wrote: Doctors, they ate the professionals in this situation.
Why isn't this part of the story getting more press?
Oh. My. Gods. The Doctors have been the real zombies the whole time! Long hours with no rest, always around dead or dying people, always removing organs or "dead tissue" from people. THE SIGNS HAVE BEEN THERE THE WHOLE TIME!
Vaktathi wrote: Severe brain damage, unable to move arms or legs or open eyes, seizures, epilieptic encephalopathy? Even if the kid survived, he'd be a complete vegetable for whatever life he'd have even if the treatment was successful, which was always extremely doubtful. The US doctor who was willing to treat the kid said as much.
And the treatment they had in mind wasn't near the stage where human testing would be the next step.
I don't agree that he baby Charlie would be benefiting from this. I don't believe that any form of life is better than no life, when you are a crippled vegetable on life support with no long term prospects. When I asked who benefits, I believe it's the conscience of the parents I think is coming first, not the genuine wellbeing of the patient.
This really depends on how you see life vs death. Is being alive better than being dead? We can't really answer that, that is a very personal question for a person. Many have differing views on the subject. Even more so, this was a child who would not be able to express whether or not they want to live. So who do we ask about that? Doctors? No. Why do you ask? If the child was born perfectly fine, it would never have dealt with the doctors. The child would have grown up around its parents, learned and grown with the parents and most likely taken many characteristics of the parents. Furthermore, the child is the responsibility of the parents. The parents would be acting in the interest of the child as the childs poa. The decisions a poa makes should be taken as the decisions straight from the patient themselves. What this the court did was effectively strip the parents of this right.
This was not a death panel, though this was a panel that will ultimately result in a death. But, the death would have happened anyways. This was a panel that stripped the rights of the parent, preventing them from seeking all possible treatments available for their child.
Dreadwinter wrote: This was a panel that stripped the rights of the parent,
Rights of the parents =/= rights of the child.
Sometimes those with all the love and best intentions in the world can make the wrong decisions that are harmful to the people they are trying to help.
nfe wrote: None of us have anything close to the expertise to discuss this intelligently.
As general rules, though, I think doctors should trump parents in care decisions, and whether allowing someone to die is the right choice or not is, for me, entirely down to level of discomfort they are in. Unfortunately, expert opinion on the level of discomfort Charlie Gard was in ranges from zero to extreme.
Indeed. It was totally immoral for the hospital and government to prevent him from receiving this experimental treatment. They have ZERO business in deciding when to pull the plug, that should have been solely the parents decision.
It has nothing to do with the government. You need to get a bit more familiar with what has happened rather than jumping straight into the EVIL SOCIALIST DEATH PANEL HEALTHCARE like all the US Twitter stereotypes are doing. Just need to tick off the NHS would have killed Stephen Hawking box on my bingo card.
They broke the Hippocratic oath at the very least.
I'd argue that artificially prolonging the life of someone who is suffering and getting worse is doing harm.
But, the doctors do not have the right to make that call. The parents are the legal guardians of the baby. They should be the ones to make the decision. Not the doctors. Doctors should never force a particular course of action. They need consent, and should always need consent. They should never have the right to override the people who have that right.
So yes. They did break the Hippocratic oath. They denied treatment to someone whose legal guardians wanted to continue treatment(which legally is the same as the person being treated saying he wants to continue treatment).
We could also say they should be charged with kidnapping because they held someone against their will from leaving(to go seek treatment elsewhere).
Dreadwinter wrote: This was a panel that stripped the rights of the parent,
Rights of the parents =/= rights of the child.
Sometimes those with all the love and best intentions in the world can make the wrong decisions that are harmful to the people they are trying to help.
But the government doesn't have any right to say what the child wants. The closest we can get to someone who knows what the child wants are the parents. All they wanted was to try a treatment option that was available. They were trying to improve his quality of life. They were not actively harming him, unlike all the so called "medical professionals".
And that's the argument for why female genital mutilation should be allowed, or why parents should be able to harvest organs from their children, or why parents should be able to let their children die from cancer, or why parents should be able to force an abortion on their child or force it to carry a pregnancy to term.
Parents should never be the almighty decision maker when it becomes evident that the decision is no longer about the patient. All patients deserve their own independent voice.
I think it's a bit twisted when doctors, in keeping with the Hippocratic oath's principles, refuse to prolong suffering in a situation deemed hopeless are accused of breaking the Hippocratic oath because they didn't listen to "legal guardians." Being a legal guardian does not mean you have the best interest of the patient at heart, and it doesn't mean a doctor telling you something you don't want to hear is unethical.
It is also worth to note that this same thing happens every day in hospitals around the world, including the US.
It's not even about "is this a waste of money" as it is often portrayed. It's about the ethical issue of "are you treating the patient" vs "are you treating the family and prolonging the suffering of the patient or keeping a corpse alive for their sake".
I've also taken care of way to many people that were the victims of family members who were emotionally unable to deal with the reality that was facing them. I've had to stand up to many family members who tried to bully the patient into making different decisions. I've had lawsuits threatened against me because I made sure the patient was able to use her voice, because the family was not ready for reality even though she was. It's hard enough to do when the patient is able to speak for him or herself. It's even harder to do when the patient does not have anybody speaking on his or her behalf. At some point someone needs to speak for the patient and think "what is best for him and what would he want".
Every article is talking about how hard this is for the parents, but the hard cold reality is that the emotional well being of the parents doesn't matter one single bit. It's the patient that matters and that's the only thing that matters. You don't do anything to a patient just because it will make a family member feel better. That's the problem in a lot of medicine.
There are a lot of bodies with zero quality of life who are suffering for years hooked up to machines while their body is slowly shutting down, for the simple reason that a family member is saying "I am not ready to deal with this reality yet and I'm not ready to have a dead parent". So we shrug our shoulders and say "sorry lady, gotta suffer because we don't want your daughter to be sad". Because the person who has a voice is using that voice for herself, while the patient remains voiceless.
It's easy to judge the actions of panels who make these decisions, but it's hard to actually be on them and make the decisions. The best thing that can come out of this is to realize that we need a system that is able to give a better voice to those without one, and to realize that family members are not the patient.
Fill out your dang Advanced Directives people!
This is one of the best bits I think I've ever seen on the OT. Have an exalt.
And that voice should not and never be the government or healthcare providers.
Lets say what if Charlie had been an autistic kid who had an accident and had to be put on a ventilator for the rest of his life, but he was in constant pain? do you think the government should have the right to euthanize him too even if his parents don't want you to?
This is a major slippery slope which leads to a bad place where the government can kill you just because you have what they consider a terminal illness or because "you are suffering". This is not something anybody with any sort of moral code should want anything to do with. Anybody who does is completely morally bankrupt and is the worst kind of evil.
d-usa wrote: And that's the argument for why female genital mutilation should be allowed, or why parents should be able to harvest organs from their children, or why parents should be able to let their children die from cancer, or why parents should be able to force an abortion on their child or force it to carry a pregnancy to term.
Parents should never be the almighty decision maker when it becomes evident that the decision is no longer about the patient. All patients deserve their own independent voice.
That isn't the argument made for female genital mutilation or any of those things. Those arguments are making the assumption that a child is the property of the parent to do with as they wish. Those often involve children who are in a very different situation from the child here.
The argument being made here is that the parents have a right to seek whatever treatment they can in order to save the life/prolong the life of their child. Those are very very different arguments and they should never, in any way, be mixed up.
Grey Templar wrote: But the government doesn't have any right to say what the child wants. The closest we can get to someone who knows what the child wants are the parents. All they wanted was to try a treatment option that was available. They were trying to improve his quality of life. They were not actively harming him, unlike all the so called "medical professionals".
I completely agree and empathise they they were trying to do the right thing. I have no trouble in understanding that they believed they were doing the right thing. But I disagree that they actually were doing the right thing. I also disagree that they were not harming the child. This is a restatement of what I wrote before - they can truely believe they are doing the right thing and causing no harm when in actuality they are causing harm.
And the government - as the legal extension of society - absolutely has the power to step in when good people, through their best intentions, cause harm.
d-usa wrote: And that's the argument for why female genital mutilation should be allowed, or why parents should be able to harvest organs from their children, or why parents should be able to let their children die from cancer, or why parents should be able to force an abortion on their child or force it to carry a pregnancy to term.
Parents should never be the almighty decision maker when it becomes evident that the decision is no longer about the patient. All patients deserve their own independent voice.
The Patient comes first, not the parent, at any time.
The Doctors have every right to overrule, even have parents arrested if they are acting in negative interests of child in the extreme.
Idealy, any decision should be made in a combined and informed process for both. This is a rafe case that forced the Doctors to apply for court orders, and such for full Authority on care choices.
This case like this maybe comes up once In a year, or rarer out of millions of cases treated.
Lets say what if Charlie had been an autistic kid who had an accident and had to be put on a ventilator for the rest of his life, but he was in constant pain? do you think the government should have the right to euthanize him too even if his parents don't want you to?
I think a parent who is knowingly leaving their child in constant pain, is a pretty gakky parent. Especially since the kid is autistic and possible completely unable to comprehend why they are in pain to begin with.
Seriously, what kind of fethed up scenario is that that you're actually going to argue the kid's best interest is to be kept alive? The parents in this hypothetical are clearly wrong.
This is a major slippery slope which leads to a bad place where the government can kill you just because you have what they consider a terminal illness or because "you are suffering".
Dude. This is like one of the most heart breaking stories to come out in years, but its outcome is hardly an indicator that we're on the verge of soylent green becoming a reality. 1000% overreaction.
Grey Templar wrote: But the government doesn't have any right to say what the child wants. The closest we can get to someone who knows what the child wants are the parents. All they wanted was to try a treatment option that was available. They were trying to improve his quality of life. They were not actively harming him, unlike all the so called "medical professionals".
I completely agree and empathise they they were trying to do the right thing. I have no trouble in understanding that they believed they were doing the right thing. But I disagree that they actually were doing the right thing. I also disagree that they were not harming the child. This is a restatement of what I wrote before - they can truely believe they are doing the right thing and causing no harm when in actuality they are causing harm.
And the government - as the legal extension of society - absolutely has the power to step in when good people, through their best intentions, cause harm.
Right. So just so we are clear.
You are 100% ok with the government having absolute carte blanc to say "hey, this person should die because its the best thing for them".
You are ok with giving the government absolute power to kill any citizen if the government has, for whatever reason, decided that its in that persons best interest.
Surely you realize that the potential for abuse here is insane. Absolutely insane. Any intelligent person should be able to see this, and any decent person should be appalled to the core that anybody would even consider this.
Dude. This is like one of the most heart breaking stories to come out in years, but its outcome is hardly an indicator that we're on the verge of soylent green becoming a reality. 1000% overreaction.
If people like you keep saying stuff like this, yes we are on the verge of soylent green becoming reality.
You are 100% ok with the government having absolute carte blanc to say "hey, this person should die because its the best thing for them".
That's what a court system and injunctions are for.
You are ok with giving the government absolute power to kill any citizen if the government has, for whatever reason, decided that its in that persons best interest.
Just turn that 1000% up to 2000% XD gonna be honest I don't think the structural integrity is gonna hold at that level.
Surely you realize that the potential for abuse here is insane.
Surely you're not so riled up on this, not to realize that you're alternative is equally ripe in potential for abuse? "Legal guardian is always right" was literally given three examples on the last page of how it can be abused in completel violation of basic human decency, let alone quality of patient care.
But, the doctors do not have the right to make that call. The parents are the legal guardians of the baby. They should be the ones to make the decision.
The doctors have legal authority. You can argue the morality of that, but that's how it is.
Doctors should never force a particular course of action.
Disagree. They should when a patient can't have a voice. That's how we stop parents demanding their kids die because blood transfusions are against their religion or because their raped 12 year old can't safely carry that baby to term.
They need consent, and should always need consent.
The patient can't consent.
They should never have the right to override the people who have that right.
Circular reasoning. I don't accept that the right to artificially prolong a painful life belongs to anyone but a the person suffering it. So I don't think doctors are overriding anyone at all.
So yes. They did break the Hippocratic oath.
This does not logically follow your above statements. You've not established that they have caused harm.
They denied treatment to someone whose legal guardians wanted to continue treatment (which legally is the same as the person being treated saying he wants to continue treatment).
No they didn't. As noted, the doctors have legal authority.
We could also say they should be charged with kidnapping because they held someone against their will from leaving(to go seek treatment elsewhere).
No they didn't, A) Charlie didn't ask to leave, because he can't, and B) the people with legal authority didn't want him to go.
But the government doesn't have any right to say what the child wants.
Again, the government has had zero input whatsoever. They have no legal right to interfer in any way.
The closest we can get to someone who knows what the child wants are the parents. All they wanted was to try a treatment option that was available. They were trying to improve his quality of life. They were not actively harming him, unlike all the so called "medical professionals".
You're making enormous, unconnected leaps here. Firstly, the parents are exactly as clueless as to Charlie's wishes as anyone else. Because he has never (and will never be able, irrespective of any treatment) be able to communicate them. And 'active harm'? What complete nonsense.
Grey Templar wrote: But the government doesn't have any right to say what the child wants. The closest we can get to someone who knows what the child wants are the parents. All they wanted was to try a treatment option that was available. They were trying to improve his quality of life. They were not actively harming him, unlike all the so called "medical professionals".
I completely agree and empathise they they were trying to do the right thing. I have no trouble in understanding that they believed they were doing the right thing. But I disagree that they actually were doing the right thing. I also disagree that they were not harming the child. This is a restatement of what I wrote before - they can truely believe they are doing the right thing and causing no harm when in actuality they are causing harm.
And the government - as the legal extension of society - absolutely has the power to step in when good people, through their best intentions, cause harm.
Right. So just so we are clear.
You are 100% ok with the government having absolute carte blanc to say "hey, this person should die because its the best thing for them".
You are ok with giving the government absolute power to kill any citizen if the government has, for whatever reason, decided that its in that persons best interest.
Surely you realize that the potential for abuse here is insane. Absolutely insane. Any intelligent person should be able to see this, and any decent person should be appalled to the core that anybody would even consider this.
Dude. This is like one of the most heart breaking stories to come out in years, but its outcome is hardly an indicator that we're on the verge of soylent green becoming a reality. 1000% overreaction.
If people like you keep saying stuff like this, yes we are on the verge of soylent green becoming reality.
Okay, you are taking this hyperbole way too far and it is hurting the arguments you agree with. Nobody has carte blanc to do anything with a patient, ever. Nobody has the absolute power to kill any citizen just because it is in that persons best interest. The idea that people would abuse this system to kill off people for what I assume is just "funsies" according to your argument, is ridiculous and honestly insulting to me personally, as a person who works in the field.
Edit: Just so we are clear, not all doctors take the Hippocratic oath anymore and even when they did, it is not a binding agreement in any form. It is just a ceremonial thing. You cannot be charged or prosecuted or anything stupid like that for breaking it.
Denying a treatment is not inherently a violation of the Hippocratic oath. If the treatment is pointless, unsafe, untested, unready,, etc, then in keeping with that oath, they will deny it as they may inflict greater harm and consume great resources, for no appreciable benefit, and that is perfectly in keeping with that oath.
In this case, the treatment was unready for human testing, had a very small success probability, and even if successful would left the child a veggie, and likely would just extend the mechanical operation of his body a couple extra years, and nothing more. For most doctors, that treatment is just unnecessary trauma on a terminal patient, and refusing that would absolutely be in line with their oath. Tragic and sad, to be sure, but not against their oath at all.
Talking about the doctors as Kidnappers is...well, straying strongly into hyperbole-land.
You are 100% ok with the government having absolute carte blanc to say "hey, this person should die because its the best thing for them".
That's what a court system and injunctions are for.
You are ok with giving the government absolute power to kill any citizen if the government has, for whatever reason, decided that its in that persons best interest.
Just turn that 1000% up to 2000% XD gonna be honest I don't think the structural integrity is gonna hold at that level.
Surely you realize that the potential for abuse here is insane.
Surely you're not so riled up on this, not to realize that you're alternative is equally ripe in potential for abuse? "Legal guardian is always right" was literally given three examples on the last page of how it can be abused in completel violation of basic human decency, let alone quality of patient care.
The potential abuse of a legal guardian is far far less worse than the guaranteed abuse that a government with total power and authority to kill any injured or sick citizen would be.
The government is not your friend. It should never be given anything close to this kind of authority. This is about as evil as you could get.
Okay, you are taking this hyperbole way too far and it is hurting the arguments you agree with. Nobody has carte blanc to do anything with a patient, ever. Nobody has the absolute power to kill any citizen just because it is in that persons best interest. The idea that people would abuse this system to kill off people for what I assume is just "funsies" according to your argument, is ridiculous and honestly insulting to me personally, as a person who works in the field.
Incorrect. That just happened in this case. The doctors went to the government, and the government said "yeah, you can kill this kid".
This sets a dangerous precedent for it to keep occuring anytime you have a terminally ill patient.
What if you have someone who has stage 4 cancer. The doctor is sure that this person will die eventually and suggests that they stop treatment and just die. The patient decides he wants to continue treatment. The doctor then, according to the arguments of all the sick people in this thread, could legally go to the government and get an order to take away this person's right to choose to continue treatment and give that custody to the government.
You are 100% ok with the government having absolute carte blanc to say "hey, this person should die because its the best thing for them"
Well, since you've gone straight for the hyperbole, sure, what the hell, why not. Let's give the Prime Minister the power to assassinate whomever they want at will.
Let's ignore the law, let's ignore parliamentary precedent, let's ignore the courts, let's ignore the limits on parliamentary privilege, let's ignore the powers of the populace to pressure, recall and re-elect MPs.
If given the choice between letting an independent body rule on treatments that are in the best interest of the patient or letting parents do whatever they want with a patient because they are the parent, it's a pretty easy choice to make for me.
And to argue that this decision means that the government can kill anyone for any reason is the stupidest thing I have heard this month, and I say that with Trump as a president.
Grey Templar wrote: The potential abuse of a legal guardian is far far less worse than the guaranteed abuse that a government with total power and authority to kill any injured or sick citizen would be.
The government is not your friend. It should never be given anything close to this kind of authority. This is about as evil as you could get.
The government didn't kill anyone. Doctors made a determination, parents disagreed they went to court, court heard arguments and rendered a verdict. This is no where even close to some kind of dystopia.
You gotta dial it back man. Like jesus you are overreacting in a way that makes me concerned for your quality of life (and I'm a self admitted donkey-cave XD)
Grey Templar wrote: The potential abuse of a legal guardian is far far less worse than the guaranteed abuse that a government with total power and authority to kill any injured or sick citizen would be.
The government is not your friend. It should never be given anything close to this kind of authority. This is about as evil as you could get.
The government didn't kill anyone. Doctors made a determination, parents disagreed they went to court, court heard arguments and rendered a verdict. This is no where even close to some kind of dystopia.
You gotta dial it back man. Like jesus you are overreacting in a way that makes me concerned for your quality of life (and I'm a self admitted donkey-cave XD)
No the government definitely did kill him. They were the ones who had the power to say Yes or No. They said Yes. Ergo, they did do the deed through the doctor.
No, its not total dystopia yet. But this is how you get one. Little things like this which advance over time, and people like you who go along with it and buy all the BS to justify it.
Grey Templar wrote: What if you have someone who has stage 4 cancer. The doctor is sure that this person will die eventually and suggests that they stop treatment and just die. The patient decides he wants to continue treatment. The doctor then, according to the arguments of all the sick people in this thread, could legally go to the government and get an order to take away this person's right to choose to continue treatment and give that custody to the government.
That theoretical is so radically divorced from what actually just happened that I can only suggest you go and read up on the case.
Grey Templar wrote: The doctors went to the government, and the government said "yeah, you can kill this kid".
The kid was already dead, nobody killed him.
The failure of the parents to make a rational decision about treating the child based on the actual condition, rather than treating themselves based on a failure to accept reality, is what lead to this point.
Truth is that you, the parents, and many people, actually cared less about the child than the people making the actual decision to do what is in the best interest of that child.
Grey Templar wrote: . No, its not total dystopia yet. But this is how you get one. Little things like this which advance over time, and people like you who go along with it and buy all the BS to justify it.
Just to be clear, those of us who support the outcome are not just sheeple. Many of us have thought through the many ethical problems of the situation and have decided that not only is this the right outcome, but that this is actually the compassionate society we want to have.
Grey Templar wrote: What if you have someone who has stage 4 cancer. The doctor is sure that this person will die eventually and suggests that they stop treatment and just die. The patient decides he wants to continue treatment. The doctor then, according to the arguments of all the sick people in this thread, could legally go to the government and get an order to take away this person's right to choose to continue treatment and give that custody to the government.
That theoretical is so radically divorced from what actually just happened that I can only suggest you go and read up on the case.
No its really not.
Legally, there is no difference between a person having custody of themselves, or another person having custody of another. If a parent has custody over their child, or the child is grown and has custody of themselves, legally the right to pick treatments is identical. It's just a case of whose mouth the decision comes from.
So yes, this case has set a precedent which would theoretically allow a doctor to take away a patients custody of himself and give it to the government if the doctor felt that the patient wasn't making medical decisions that were in his best interest. It's the next logical step.
Grey Templar wrote: The doctors went to the government, and the government said "yeah, you can kill this kid".
The kid was already dead, nobody killed him.
The failure of the parents to make a rational decision about treating the child based on the actual condition, rather than treating themselves based on a failure to accept reality, is what lead to this point.
Truth is that you, the parents, and many people, actually cared less about the child than the people making the actual decision to do what is in the best interest of that child.
Whatever lets you sleep at night bro. But seriously, you'd have to have a seriously sick mind to think that. Turning it around to claim that I, and the parents, are the actual monsters here.
You are 100% ok with the government having absolute carte blanc to say "hey, this person should die because its the best thing for them".
That's what a court system and injunctions are for.
You are ok with giving the government absolute power to kill any citizen if the government has, for whatever reason, decided that its in that persons best interest.
Just turn that 1000% up to 2000% XD gonna be honest I don't think the structural integrity is gonna hold at that level.
Surely you realize that the potential for abuse here is insane.
Surely you're not so riled up on this, not to realize that you're alternative is equally ripe in potential for abuse? "Legal guardian is always right" was literally given three examples on the last page of how it can be abused in completel violation of basic human decency, let alone quality of patient care.
The potential abuse of a legal guardian is far far less worse than the guaranteed abuse that a government with total power and authority to kill any injured or sick citizen would be.
The government is not your friend. It should never be given anything close to this kind of authority. This is about as evil as you could get.
Okay, you are taking this hyperbole way too far and it is hurting the arguments you agree with. Nobody has carte blanc to do anything with a patient, ever. Nobody has the absolute power to kill any citizen just because it is in that persons best interest. The idea that people would abuse this system to kill off people for what I assume is just "funsies" according to your argument, is ridiculous and honestly insulting to me personally, as a person who works in the field.
Incorrect. That just happened in this case. The doctors went to the government, and the government said "yeah, you can kill this kid".
This sets a dangerous precedent for it to keep occuring anytime you have a terminally ill patient.
What if you have someone who has stage 4 cancer. The doctor is sure that this person will die eventually and suggests that they stop treatment and just die. The patient decides he wants to continue treatment. The doctor then, according to the arguments of all the sick people in this thread, could legally go to the government and get an order to take away this person's right to choose to continue treatment and give that custody to the government.
Okay so, no this is not what is happening and no the government cannot do that. You clearly have no clue what you are talking about and are riding out an emotional thing here. The doctor can say they are stopping all treatment, but then the patient can say "Okay, I am going to get a second opinion" then go and get treated somewhere else or seek further treatment. At that point, the doctor cannot do anything to stop the person, nor can the government. The situation with the child is different because the child is not making the decision, but the legal guardians. Why would the doctor care if they were seeking more treatment? He knows the person will die. If the person gets a second opinion and lives, sweet. Good job other doctor. But that is the end of it. No courts or anything.
You are mixing up very important things in this case.
Vaktathi wrote: Denying a treatment is not inherently a violation of the Hippocratic oath. If the treatment is pointless, unsafe, untested, unready,, etc, then in keeping with that oath, they will deny it as they may inflict greater harm and consume great resources, for no appreciable benefit, and that is perfectly in keeping with that oath.
In this case, the treatment was unready for human testing, had a very small success probability, and even if successful would left the child a veggie, and likely would just extend the mechanical operation of his body a couple extra years, and nothing more. For most doctors, that treatment is just unnecessary trauma on a terminal patient, and refusing that would absolutely be in line with their oath. Tragic and sad, to be sure, but not against their oath at all.
Talking about the doctors as Kidnappers is...well, straying strongly into hyperbole-land.
In this case the Doctors had right to refuse tp treat and to sadly let nature take its course it would have anyway.
The judge made a balanced choice, and weighed heavily both arguments.
This was one of the highest ranking family court judges in UK, and a senior UK judge and legal expert.
With elite medical teams. None of the choices or arguments where taken lightly.
Grey Templar wrote: . No, its not total dystopia yet. But this is how you get one. Little things like this which advance over time, and people like you who go along with it and buy all the BS to justify it.
Just to be clear, those of us who support the outcome are not just sheeple. Many of us have thought through the many ethical problems of the situation and have decided that not only is this the right outcome, but that this is actually the compassionate society we want to have.
Your "compassionate society" is actually a society of institutionalized murder. With the thin veil of saying "its in your best interest".
Whatever lets you sleep at night bro. But seriously, you'd have to have a seriously sick mind to think that. Turning it around to claim that I, and the parents, are the actual monsters here.
They are, they really are.
Anyone with any actual experience in this will tell you that.
Nobody is talking about giving the government total power and authority to kill any injured or sick citizen.
We are not talking about Big Government and "Death Panels" killing people who are no longer useful or productive.
We are talking about society telling the parents to accept reality. The treatment would have a very tiny chance of success, and even if so, would not undo the damage that has already left this child basically a vegetable. All that would be accomplished is delaying the inevitable for a short time, at great expense and with no possibility for improvement in the patient's quality of life.
You are 100% ok with the government having absolute carte blanc to say "hey, this person should die because its the best thing for them".
That's what a court system and injunctions are for.
You are ok with giving the government absolute power to kill any citizen if the government has, for whatever reason, decided that its in that persons best interest.
Just turn that 1000% up to 2000% XD gonna be honest I don't think the structural integrity is gonna hold at that level.
Surely you realize that the potential for abuse here is insane.
Surely you're not so riled up on this, not to realize that you're alternative is equally ripe in potential for abuse? "Legal guardian is always right" was literally given three examples on the last page of how it can be abused in completel violation of basic human decency, let alone quality of patient care.
The potential abuse of a legal guardian is far far less worse than the guaranteed abuse that a government with total power and authority to kill any injured or sick citizen would be.
The government is not your friend. It should never be given anything close to this kind of authority. This is about as evil as you could get.
Okay, you are taking this hyperbole way too far and it is hurting the arguments you agree with. Nobody has carte blanc to do anything with a patient, ever. Nobody has the absolute power to kill any citizen just because it is in that persons best interest. The idea that people would abuse this system to kill off people for what I assume is just "funsies" according to your argument, is ridiculous and honestly insulting to me personally, as a person who works in the field.
Incorrect. That just happened in this case. The doctors went to the government, and the government said "yeah, you can kill this kid".
This sets a dangerous precedent for it to keep occuring anytime you have a terminally ill patient.
What if you have someone who has stage 4 cancer. The doctor is sure that this person will die eventually and suggests that they stop treatment and just die. The patient decides he wants to continue treatment. The doctor then, according to the arguments of all the sick people in this thread, could legally go to the government and get an order to take away this person's right to choose to continue treatment and give that custody to the government.
Okay so, no this is not what is happening and no the government cannot do that. You clearly have no clue what you are talking about and are riding out an emotional thing here. The doctor can say they are stopping all treatment, but then the patient can say "Okay, I am going to get a second opinion" then go and get treated somewhere else or seek further treatment. At that point, the doctor cannot do anything to stop the person, nor can the government. The situation with the child is different because the child is not making the decision, but the legal guardians. Why would the doctor care if they were seeking more treatment? He knows the person will die. If the person gets a second opinion and lives, sweet. Good job other doctor. But that is the end of it. No courts or anything.
You are mixing up very important things in this case.
Except that is exactly what the parents were trying to do. Get him to the US for a second opinion and other treatments. The Uk government and his doctor there denied him that.
Would just like to point out (now that I've recovered from my nap.) that hospitals going to courts over patients is quite common, it happens pretty much on a daily basis. You just don't normally see it in the news.
Mostly it happens in situations like this, where the person receiving the care has no word (due to their illness) and the doctors and the family are at a massive disagreement over the care options.
A case that springs to mind is when a woman was suffering from pre-eclampsia and was refusing treatment, despite the fact that it would kill her and kill her child. So the doctors went to court to give treatment for the child to live. It was granted. And then the woman sued the hospital for GBH and she won.
Grey Templar wrote: No the government definitely did kill him. They were the ones who had the power to say Yes or No. They said Yes. Ergo, they did do the deed through the doctor.
If only I could get people to be so passionate about the death penalty...
No, its not total dystopia yet. But this is how you get one
We could say that about any government policy under the sun if we were willing to make the slope slippery enough, and you're basically running on a slippery sheer drop cliff here.
Little things like this which advance over time, and people like you who go along with it and buy all the BS to justify it.
I get the distinct impression there's something else going on here, because this kind of wild overreaction is not normal. It's starting to feel like I'm kicking a small child having a tantrum... so yeah. Just gonna go over there *points and walks away*
Yes, its totally an overreaction and throwing a tantrum to find it morally wrong for the government to be able to kill someone because "they're suffering".
Grey Templar wrote: Legally, there is no difference between a person having custody of themselves, or another person having custody of another. If a parent has custody over their child, or the child is grown and has custody of themselves, legally the right to pick treatments is identical. It's just a case of whose mouth the decision comes from.
So yes, this case has set a precedent which would theoretically allow a doctor to take away a patients custody of himself and give it to the government if the doctor felt that the patient wasn't making medical decisions that were in his best interest. It's the next logical step.
Again, this is wrong. A parent only has custody over their child until a certain point. If I am in the room with a parent and their kid and the parent turns around and punches the kid square in the nose. Guess what, that parent has just lost the right to make decisions for that kid. I am required, legally as a mandated reporter, to report that abuse to the government and appropriate parties. Then I am required to remove that child from the parent in order to keep the child safe.
The issue here is ethics and when doctors/courts are allowed to step in and tell the parents they have gone too far. Seeking further treatment is, in my opinion, not going too far. But again, that also depends on the type of treatment they are seeking. They were seeking legitimate medical help from a professional. They should be allowed to go. If they were taking the child to a back woods shaman who sacrifices animals to the gods in order to cleanse a disease, then I would have had an issue.
But, you clearly need to step back and take a breather, look at this again. Read up on your ethics.
If only I could get people to be so passionate about the death penalty...
Not the same thing. Killing someone who has been convicted of a heinous crime is not the same as deciding to kill an innocent person whose only crime was being sick.
Grey Templar wrote: Legally, there is no difference between a person having custody of themselves, or another person having custody of another. If a parent has custody over their child, or the child is grown and has custody of themselves, legally the right to pick treatments is identical. It's just a case of whose mouth the decision comes from.
So yes, this case has set a precedent which would theoretically allow a doctor to take away a patients custody of himself and give it to the government if the doctor felt that the patient wasn't making medical decisions that were in his best interest. It's the next logical step.
Again, this is wrong. A parent only has custody over their child until a certain point. If I am in the room with a parent and their kid and the parent turns around and punches the kid square in the nose. Guess what, that parent has just lost the right to make decisions for that kid. I am required, legally as a mandated reporter, to report that abuse to the government and appropriate parties. Then I am required to remove that child from the parent in order to keep the child safe.
The issue here is ethics and when doctors/courts are allowed to step in and tell the parents they have gone too far. Seeking further treatment is, in my opinion, not going too far. But again, that also depends on the type of treatment they are seeking. They were seeking legitimate medical help from a professional. They should be allowed to go. If they were taking the child to a back woods shaman who sacrifices animals to the gods in order to cleanse a disease, then I would have had an issue.
But, you clearly need to step back and take a breather, look at this again. Read up on your ethics.
Punching a kid in the nose is not the same as desperately looking for medical treatment. You should probably be the one reading up on ethics, along with everybody else in this thread.
Whatever lets you sleep at night bro. But seriously, you'd have to have a seriously sick mind to think that. Turning it around to claim that I, and the parents, are the actual monsters here.
They are, they really are.
Anyone with any actual experience in this will tell you that.
No they wont.
Mostly because I have experience in this and I am not saying that.
Whatever lets you sleep at night bro. But seriously, you'd have to have a seriously sick mind to think that. Turning it around to claim that I, and the parents, are the actual monsters here.
They are, they really are.
Anyone with any actual experience in this will tell you that.
No they wont.
Mostly because I have experience in this and I am not saying that.
Well, my anecdotal group of folks who have dealt with families keeping empty shells alive and suffering agrees at least.
I have no empathy for family putting their emotional needs above the needs of the patient.
Grey Templar wrote: Yes, its totally an overreaction and throwing a tantrum to find it morally wrong for the government to be able to kill someone because "they're suffering".
Except that the government isnt doing that.
The government in this case is not killing anyone.
This person is already going to die imminently. The government is saying that, given such a situation and that the proposed treatment is extremely involved and a loooooooooooooooooong shot (and is unready for live human trials), and where even if successful would, at best, result in human potato living a few extra years, it's best to just let it go for the sake of the patient.
welshhoppo wrote: A case that springs to mind is when a woman was suffering from pre-eclampsia and was refusing treatment, despite the fact that it would kill her and kill her child. So the doctors went to court to give treatment for the child to live. It was granted. And then the woman sued the hospital for GBH and she won.
Didn't one of those big profile coma cases in the US, you know the ones where someone wants to end life support and someone else doesn't and they have a big court battle over who gets to have the final say, end in something like this? Anyone? I'd swear I heard one where life support was ultimately ended, and the person who lost the court battle then sued over wrongful death or some such and won.
Grey Templar wrote: Yes, its totally an overreaction and throwing a tantrum to find it morally wrong for the government to be able to kill someone because "they're suffering".
Except that the government isnt doing that.
The government in this case is not killing anyone.
This person is already going to die imminently. The government is saying that, given such a situation and that the proposed treatment is extremely involved and a loooooooooooooooooong shot (and is unready for live human trials), and where even if successful would, at best, result in human potato living a few extra years, it's best to just let it go for the sake of the patient.
These are not the thing.
Riiiight. Its just the government saying that you can only get treatments if they have a reasonable chance of success. Otherwise you should just die already and get it over with.
We'll never know what might have happened if he'd gotten the treatment. Maybe it would have substantially improved his function and let him live even longer than a few years. Maybe it would have done nothing. Either way, it was immoral not to try. Once you tried the treatment, and if it failed and there was literally nothing left. Then maybe we could talk about pulling the plug. Then maybe we could say that the parents should let go. But instead it got ended early. And that was truly monstrous.
Mental functions, no effect or minimal.
He was blind, deaf, not registering much activity that should be there had signs of extensive and irreversible brain damage.
Sure you might fix the body but it has no advanced higher level function bar existing.
Is that life. Or is that just a extension of his suffering.
Whatever lets you sleep at night bro. But seriously, you'd have to have a seriously sick mind to think that. Turning it around to claim that I, and the parents, are the actual monsters here.
They are, they really are.
Anyone with any actual experience in this will tell you that.
No they wont.
Mostly because I have experience in this and I am not saying that.
Well, my anecdotal group of folks who have dealt with families keeping empty shells alive and suffering agrees at least.
I have no empathy for family putting their emotional needs above the needs of the patient.
That is sad, because you should always have empathy for family who are losing a loved one. Some people do not have the experience we have, they cannot deal with death like we do. They cope in different ways, they have not had to develop the skills we have in order to deal with it. We have to take a few minutes, then move on to the next person we are treating. But these are family members, loved ones. You should always feel empathy for people trying to cope, even if they do not understand what they are doing.
You cannot hold everybody to the standards of a nurse or doctor.
Grey Templar wrote:Yes, its totally an overreaction and throwing a tantrum to find it morally wrong for the government to be able to kill someone because "they're suffering".
How many times does it need to be pointed out that the government had no input at all in this case? Not a jot. Nothing.
Mental functions, no effect or minimal.
He was blind, deaf, not registering much activity that should be there had signs of extensive and irreversible brain damage.
Sure you might fix the body but it has no advanced higher level function bar existing.
Is that life. Or is that just a extension of his suffering.
Maybe not. But it could have. We still don't know very much about the brain. People come out of comas for no reason at all.
It is possible that better mechanical function could potentially allow for some brain healing. Besides, they had raised all the necessary money to do it. If they tried it and he didn't have any improvement, then we could talk about ending it. But not before.
Grey Templar wrote:Yes, its totally an overreaction and throwing a tantrum to find it morally wrong for the government to be able to kill someone because "they're suffering".
How many times does it need to be pointed out that the government had no input at all in this case? Not a jot. Nothing.
Got it yet?
Did you miss the court ruling? That was the government stepping in and giving their input, because courts are part of the government. The judge clearly knew that as a result of his ruling the baby would die.
But by all means, continue to justify society moving towards an awful dystopia.
Back in March, an independent panel of medical experts assessed the little boy and considered he had no chance of recovery, there was no realistic treatment, and to keep him alive simply prolonged his suffering.
The only doctor who disagreed with this diagnosis was the American Japanese doctor who was prepared to offer $1,000,000 of experimental treatment that has never been used on this kind of disease, and gave a 10% chance of improvement. Crucially that doctor had not examined the patient or even read the case notes, so he essentially was completely guessing.
This was the basis of facts that led the judges -- not the government because in the UK and Europe we have the rule of law -- to deny the parents' case on two occasions. I believe the European Court of Human Rights declined to hear the case after it went through the UK Supreme Court.
I completely understand the parents mental suffering and their desire to cling to the slightest shred of hope.
I also understand the emotional response of the general public. It was the same thing when Cameron clamped down on refugee immigration. A week later that 3-year-old boy got drowned, his picture was on the front pages, suddenly everyone loved the poor refugees, and Cameron did a U-turn and increased the UK allocation.
In the Gard case things have gone too far. We have got to the point of death threats to doctors, and corresponding 'social' media vitriol against the supporters of the Gard family. This is why emotion has to be tempered with rational consideration. This is best done through the medium of the law.
As for the argument about "death panels", the Gards raised £1.5 million by crowd-funding to pay for treatment. The reasons for denying it were medical, not financial.
Grey Templar wrote: Yes, its totally an overreaction and throwing a tantrum to find it morally wrong for the government to be able to kill someone because "they're suffering".
Except that the government isnt doing that.
The government in this case is not killing anyone.
This person is already going to die imminently. The government is saying that, given such a situation and that the proposed treatment is extremely involved and a loooooooooooooooooong shot (and is unready for live human trials), and where even if successful would, at best, result in human potato living a few extra years, it's best to just let it go for the sake of the patient.
These are not the thing.
Riiiight. Its just the government saying that you can only get treatments if they have a reasonable chance of success. Otherwise you should just die already and get it over with.
No, it's not that tha treatment should have X chance of success, but that, even if successful, at absolute best you'd be left with a human potato. Thats the crux of the issue.
We'll never know what might have happened if he'd gotten the treatment. Maybe it would have substantially improved his function and let him live even longer than a few years. Maybe it would have done nothing. Either way, it was immoral not to try.
In my first post, I said that if there was any chance the kid could recover, they should have done it, and if such was the case they probably would have allowed it.
But that wasnt the case. Nobody, not even the US doctor claimed that this would reverse the extensive damage already done. This is to say nothing of the fact that it was not designed to treat the condition the way it was expressed in this child nor for people with the secondary conditions this child had. It's like using a screwdriver as a hammer and hoping it works.
Just like putting out a housefire wont magically rebuild the house, all you do is stop further destruction, but the consequences cannot be reversed simply by stopping whatever caused it, throwing fire suppressant all over everything doesnt fix it. This treatment *may* have stopped further destruction, but the damage already done is likely to be fatal over time and would not be affected by the treatment.
This was a choice between allowing the kid to die now, or putting him through a gruelling experience so he may have the tiniest of chances to live to 3 or 5 as vegetable. There was never any chance of regaining that body function or mental capacity.
That's what it ultimately came down to, and thats why the parents were told "no". From a medical ethics standpoint, thats an absolutely valid conclusion.
We can speculate on hypotheticals until the end of time, but medical decisions should not be based on the hope for literal miracles.
Grey Templar wrote: Not the same thing. Killing someone who has been convicted of a heinous crime is not the same as deciding to kill an innocent person whose only crime was being sick.
They didn't euthanise the child, hey withdrew treatment from a terminal case that had already left a child severely brain damaged, unable to really think, see, hear or move.
Patients often have ventilators and life support turned off when the situation is hopeless, we have do not resuscitate so as to not continually make painful attempts to pull people back from death, we don't keep administering CPR beyond a certain point.
Calling a day on treatment is not the same as killing a patient.
nfe wrote: None of us have anything close to the expertise to discuss this intelligently.
It's a question about morality, we're not getting into the specifics of whether or not the therapy would have worked.
Grey Templar wrote: But, the doctors do not have the right to make that call. The parents are the legal guardians of the baby. They should be the ones to make the decision. Not the doctors. Doctors should never force a particular course of action. They need consent, and should always need consent. They should never have the right to override the people who have that right.
This is simplistic, and if you think about it, you know it. For example, if a child has an illness that a blood transfusion would fix, and the parents are Jehovah's Witnesses and have a religious objection to blood transfusions, the state will take custody of the child until the child has been treated. Do you think that's wrong, and that parents have the right to let their children die in totally avoidable ways due to non-medical reasons? I'm sure you don't.
Grey Templar wrote:
Did you miss the court ruling? That was the government stepping in and giving their input, because courts are part of the government. The judge clearly knew that as a result of his ruling the baby would die.
But by all means, continue to justify society moving towards an awful dystopia.
Good grief. Courts are not an arm of government. They're seperate entities to which the government is answerable, and which frequently rule against them. One of the courts appealed to was not even in the UK.
You're doing yourself no favours displaying this level of ignorance whilst suggesting everyone disagreeing with you, that to an individual seem to have a better grasp of the situation, are evil baby-killing monsters.
Grey Templar wrote: The potential abuse of a legal guardian is far far less worse than the guaranteed abuse that a government with total power and authority to kill any injured or sick citizen would be.
The government is not your friend. It should never be given anything close to this kind of authority. This is about as evil as you could get.
The government didn't kill anyone. Doctors made a determination, parents disagreed they went to court, court heard arguments and rendered a verdict. This is no where even close to some kind of dystopia.
You gotta dial it back man. Like jesus you are overreacting in a way that makes me concerned for your quality of life (and I'm a self admitted donkey-cave XD)
No the government definitely did kill him. They were the ones who had the power to say Yes or No. They said Yes. Ergo, they did do the deed through the doctor.
No, its not total dystopia yet. But this is how you get one. Little things like this which advance over time, and people like you who go along with it and buy all the BS to justify it.
I don't think you understood what happened.
The court =/= the government. And it was not just the UK courts, but also the European court of human rights.
They did not say anyone could kill anyone. They agreed doctors could withdraw treatment when they felt that was in the best interest of the patient. Exactly the same choice made by doctors across the world every day.
The situation is totally not what you are making it out to be.
Here is two US articles explaining the concept of withdrawing or refusing treatment:
Did you miss the court ruling? That was the government stepping in and giving their input, because courts are part of the government. The judge clearly knew that as a result of his ruling the baby would die.
But by all means, continue to justify society moving towards an awful dystopia.
You usually have a much higher level of discourse, GT. Surely you understand how much of a complete fething backwards pageantry you've made of your last post?
I mean, you're free to argue the moral side of the story, but all you did in the last 3 page is a bad pastiche of Breitbart, and you should be conscious of it.
Did you miss the court ruling? That was the government stepping in and giving their input, because courts are part of the government. The judge clearly knew that as a result of his ruling the baby would die.
But by all means, continue to justify society moving towards an awful dystopia.
You usually have a much higher level of discourse, GT. Surely you understand how much of a complete fething backwards pageantry you've made of your last post?
I mean, you're free to argue the moral side of the story, but all you did in the last 3 page is a bad pastiche of Breitbart, and you should be conscious of it.
Sorry, I just kind of lose it when people try to justify immoral acts like this one.
And its pretty ridiculous to say courts aren't part of the government. The Judiciary is a branch of government. So yes. Its impossible to say that it wasn't the government getting involved.
This case isn't an indictment against the NHS/Single-payor system...
This is more about the relationship and rights between the patient, his parents, the providers and the UK government (yes, that include the court system).
Medically, there may have been no hope for Charlie... even at an earlier date.
Politically, I find that the process the Gards were subjected to was a crude power play of the state against the individual (the parents)... and the state won.
What's lost in this whole ordeal, imo, is this:
The treatment may or may not have caused pain (there were many divergent thoughts on this). Lots of treatments do cause pain and horrible side effects... chemotherapy and radiation treatments for cancer just as a for instance. But, really, that's beside the point.
The point is, Gard's parents believed that the chance to prolong his life was worth the chance and felt they had more options. They loved him and are in a much better position to judge than anyone else.
It's a shame that the providers/courts wouldn't give the parents the dignity to exhaust all options (since they had the means to do so).
I couldn't say what I would do as this ordeal is stuff of nightmares for me (being a father myself). But, if my kid were devastatingly sick, and I had the means to provide them alternative treatment.... I'd move the heavens to get him there, consequences be damned.
Did you miss the court ruling? That was the government stepping in and giving their input, because courts are part of the government. The judge clearly knew that as a result of his ruling the baby would die.
But by all means, continue to justify society moving towards an awful dystopia.
You usually have a much higher level of discourse, GT. Surely you understand how much of a complete fething backwards pageantry you've made of your last post?
I mean, you're free to argue the moral side of the story, but all you did in the last 3 page is a bad pastiche of Breitbart, and you should be conscious of it.
Sorry, I just kind of lose it when people try to justify immoral acts like this one.
And its pretty ridiculous to say courts aren't part of the government. The Judiciary is a branch of government. So yes. Its impossible to say that it wasn't the government getting involved.
Many (including me) would say that continuing treatment is an immoral act. It is an act that continues the suffering of a child with no benefit.
Did you miss the court ruling? That was the government stepping in and giving their input, because courts are part of the government. The judge clearly knew that as a result of his ruling the baby would die.
But by all means, continue to justify society moving towards an awful dystopia.
You usually have a much higher level of discourse, GT. Surely you understand how much of a complete fething backwards pageantry you've made of your last post?
I mean, you're free to argue the moral side of the story, but all you did in the last 3 page is a bad pastiche of Breitbart, and you should be conscious of it.
Sorry, I just kind of lose it when people try to justify immoral acts like this one.
And its pretty ridiculous to say courts aren't part of the government. The Judiciary is a branch of government. So yes. Its impossible to say that it wasn't the government getting involved.
It's only ridiculous if you have no idea what you're talking about. Please tell me how the ECHR is a branch of British government.
Did you miss the court ruling? That was the government stepping in and giving their input, because courts are part of the government. The judge clearly knew that as a result of his ruling the baby would die.
But by all means, continue to justify society moving towards an awful dystopia.
You usually have a much higher level of discourse, GT. Surely you understand how much of a complete fething backwards pageantry you've made of your last post?
I mean, you're free to argue the moral side of the story, but all you did in the last 3 page is a bad pastiche of Breitbart, and you should be conscious of it.
Sorry, I just kind of lose it when people try to justify immoral acts like this one
Grey Templar, after reading all of your posts... did you actually give a damm about this kid or are you just pushing an agenda?
This kid is better death than """"""alive""""" for 4-5 more years as a vegetable.. Thats the reality.
I don't see the problem with the law protecting voiceless citizens from being used and abused. Is like how a parent can chose to not vacinate their children. Or to reject a blood transfusion if they are Jehova Whitnesess, resulting in the child dying. Thats just absurd. All because we fear the BIG BROTHER , HE WANTS TO STEAL OUR FOOD AND KILL OUR COWS! The goverment is not our friend.
Viva la resistance!
Did you miss the court ruling? That was the government stepping in and giving their input, because courts are part of the government. The judge clearly knew that as a result of his ruling the baby would die.
But by all means, continue to justify society moving towards an awful dystopia.
You usually have a much higher level of discourse, GT. Surely you understand how much of a complete fething backwards pageantry you've made of your last post?
I mean, you're free to argue the moral side of the story, but all you did in the last 3 page is a bad pastiche of Breitbart, and you should be conscious of it.
Sorry, I just kind of lose it when people try to justify immoral acts like this one
Please, tells us more about how the government needs to respect the sanctity of life.
This confirms it then. He doesn't give a damm about the poor kid. He was just pushing an agenda. And have you the face to call other people "Inmoral"? Whaaat. Nice double standards.
d-usa wrote: Nobody involved in the expiremtal treatment argued that it would result in any improvement.
Well then why would they call it a treatment then?
Why would they call it experimental.
Galas wrote:Grey Templar, after reading all of your posts... did you actually give a damm about this kid or are you just pushing an agenda?
This kid is better death than be """"""alive""""" for 4-5 more years as a vegetable.. Thats the reality.
I don't see the problem with the law protecting voiceless citizens from being used and abused. Is like how a parent can chose to not vacinate their children. Or to reject a blood transfusion if they are Jehova Whitnesess, resulting in the child dying. Thats just absurd. All because we fear the BIG BROTHER , HE WANTS TO STEAL OUR FOOD AND KILL OUR COWS! The goverment is not our friend.
Viva la resistance!
Experimental to point it never been tested on a rat with his condition.
Not even tested to any degree. Only proven results are on similar, but similar is not exact.
Secondly..
Live as a vegetable, forever stuck brain damaged in a bed for 4-5years. That is no life.
Life is being able to do more than lie in a bed on a machine.
That's just existing, and exiting is not a life worth living.
I disconnected my grandmother after 5 years of Alzheimer. The last two ones, she was just in a bed, like a vegetable. And she lasted so much in a bed because of my mother.
Thats not being alive. If the BEST case scenario was making the child to endure 4-5 years as a vegetable... then the medics have do the right thing.
Galas wrote: I disconnected my grandmother after 5 years of Alzheimer. The last two ones, she was just in a bed, like a vegetable. And she lasted so much in a bed because of my mother.
Thats not being alive. If the BEST case scenario was making the child to endure 4-5 years as a vegetable... then the medics have do the right thing.
Aye I've seen first hand what it did to my Grandfather.
You would not let a dog suffer so. But a Human.
Sadly death was a mercy. There was not much left at the end.
My grandmother suffered a stroke while vacationing last year in Germany. She didn't recover and ended up in a coma. The only options were highly risky surgery that apparently the doctors present struggled to explain in English to my grandfather (he doesn't speak German and I guess it's hard to translate medical sutff between languages), or pulling the tube and letting nature take it's course. The later was ultimately chosen because she'd said that if she was ever in a coma she didn't want it to be dragged out, but it fethed my grandfather up pretty bad for most of the past year.
LordofHats wrote: My grandmother suffered a stroke while vacationing last year in Germany. She didn't recover and ended up in a coma. The only options were highly risky surgery that apparently the doctors present struggled to explain in English to my grandfather (he doesn't speak German and I guess it's hard to translate medical sutff between languages), or pulling the tube and letting nature take it's course. The later was ultimately chosen because she'd said that if she was ever in a coma she didn't want it to be dragged out, but it fethed my grandfather up pretty bad for most of the past year.
Honestly iv already told my fam that if i ever became a vegi just to pull the plug. this might change in the future if medical tech becomes good enough to fix most problems pretty quickly.
Same. I should probably have it in writing or something, but unless the condition is one with a higher than 50% chance of recovery I've said just end it. Not interested in having that gak dragged out.
Browsing Facebook on this subject, it's interesting to see so many Americans are up in arms about social care and the apparent evils of social care, especially when many of them (including at least one congressman, from my brief foray into it) are ignorant of any actual specifics of the case and would rather score political points.
I think the most pertinent point that came out of all of this, was the part where the American Doctor, admitted to essentially not having seen any scans and whatnot, gave the parents false hope, which in turn lead them to go to court over the whole thing.
Lots of important stuff in there, but this is pretty key:
'When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. 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. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.'
Lots of important stuff in there, but this is pretty key:
'When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. 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. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.'
Now that is definitely a new angle on the case...
I'm gonna have to read that PDF later.
The situation makes more sense why they took stance they did.
Lots of important stuff in there, but this is pretty key:
'When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. 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. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.'
No, Andrew Wakefield falsified evidence to promote his mmr work and carried out unnecessary invasive procedures like colonoscopies on children.
This guy in America was throwing out hope of a treatment that was far away from human testing stage, and having not seen much in the way of medical data on he case. He gave hope to a couple of parents without a real grasp of the case notes, what makes it dubious is if he is personally invested in the procedure he wanted to experimentally perform.
But he's no Wakefield, who is a proven fraud and whose actions have led to many children being harmed by decreased vaccination rates.
nfe wrote: So the Gards are going back to the High Court yet again this afternoon. News not been clear on exactly why, yet.
Strange, they have nothing to gain from courts now.
I mean they gave up the legal battle, the judge will have by default rules to the Hospital.
Edit. The Mirror has a live update.
Its a hearing based on if practical and to take him home or he remains at the hospital.
Seems to centre on practicality of arrangements.
Its if the hospital portable gear will fit through the house door.
Seems a valid question.
Also there offering to pay costs involved.
Hospice has been suggested if home not a doable answer.
Heh, so "government" is evil for disallowing a speculative treatment that admittedly would do nothing to reduce catastrophic damage but no word on the Dr. who pushed it to desperate parents without bothering to examine the patient or the records and retained a financial interest in the treatments.
nfe wrote: So the Gards are going back to the High Court yet again this afternoon. News not been clear on exactly why, yet.
Strange, they have nothing to gain from courts now.
I mean they gave up the legal battle, the judge will have by default rules to the Hospital.
Edit. The Mirror has a live update.
Its a hearing based on if practical and to take him home or he remains at the hospital.
Seems to centre on practicality of arrangements.
Its if the hospital portable gear will fit through the house door.
Seems a valid question.
Also there offering to pay costs involved.
Hospice has been suggested if home not a doable answer.
Imagine having to go to a hospice with a baby. Bleak. Fingers crossed they get home.
nfe wrote: So the Gards are going back to the High Court yet again this afternoon. News not been clear on exactly why, yet.
Strange, they have nothing to gain from courts now.
I mean they gave up the legal battle, the judge will have by default rules to the Hospital.
Edit. The Mirror has a live update.
Its a hearing based on if practical and to take him home or he remains at the hospital.
Seems to centre on practicality of arrangements.
Its if the hospital portable gear will fit through the house door.
Seems a valid question.
Also there offering to pay costs involved.
Hospice has been suggested if home not a doable answer.
Imagine having to go to a hospice with a baby. Bleak. Fingers crossed they get home.
Judge asked for a answer on question of portable gear getting in the house which is fair question.
Yeah that's bleak, though guess questions like that are a fair reason to askin a hearing.
Back up plan coming in at a family members house.
Not ideal but beats a hospice.
Need a specialist team to follow so I guess that where room problem was also raised. Need room for them to have privacy but also a medical team, and gear on top.
GOSH admit that finding a capable Hospice is not easy.
ICU care advanced. There mainly questions on practical, not blocking.
Judge making choice in day pr two if both sides cannot agree.
Judge saying awful to say but he asking that a timetable and a decision is made regarding timing and such.
Fair points.
Prepared to make a court order if both sides present the required information, and offering mediation Services to try and ensure a agreement if parents agree to allow a 3rd party to try and make sure arangementd are dignified and try and get a agreement on things in the case.
Deadline by 2PM tomorrow for discussion between Grads and GOSH to answer the sad questions raised and work out answers for the court hearing.
Seems to want more information to make a judgement based on both sides cases.
I'm not sure what is bleak or bad about a hospice. A hospice that specialises in end of life care is a good place for anyone who needs it. My mother worked for many years as a palliative care nurse for the elderly. They try and provide the best environment they can, keeping the medicalisation and mechanisation of the last hours to a minimum whilst providing support for the person and the family in a way that can't be done at home. Hospices for palliative care for the young are filled with dedicated and skilled nurses. They have to be as it's not a job everyone can do.
They're specifically places to die. Everyone there is either there to die, care for people who are there to die, or visiting someone who is there to die. There's no amount of brilliant care, fantastic facilities, and dedicated staff that can get around that. It's one thing if you're there as/with someone who has had a decent shift, but having to take an infant is rotten.
My heart goes out to the parents like everyone else on here, nobody should face having to bury their child.
My son was born in 2012, two months premature, as soon as he was out he was taken away to the special care so they could get to work on him all the while my wife is seriously il and drugged up to the eye balls.
After an hour I get to go down to the unit to meet the little guy only to told to prepare for the worst, it was the most crushing moment of my life. After a week my partner is able to come but it took another 5 weeks to get my son home and even then there were visits to the hospital every two days to get him checked out. As I said that was five years ago and has just finished his first year in school and Jesus I thank god everyday how lucky I was that he was fine in the end.
I've never been so great full to a group of people like I have to the NHS team that looked after him 24hrs a day for all that time.
They're specifically places to die. Everyone there is either there to die, care for people who are there to die, or visiting someone who is there to die. There's no amount of brilliant care, fantastic facilities, and dedicated staff that can get around that. It's one thing if you're there as/with someone who has had a decent shift, but having to take an infant is rotten.
Aye the live feed seems the judge seemed to just want to make sure things where done correctly, care was provided as required and practical issues was properly addressed..
Its sad, but at least someone os trying to make sure everything is dealt with in a dignified way, and make sure that Charlies interests are best served in which ever place he ends up.
And lastly, yeah, NHS can and does regularly pull off miracles, sadly not in every case. And that they might get flak at times but the staff are deadicatd, a highly trained professional's
Latest update.
They resumed and managed to get the various parties, specalists and care experts and lawyers in hand.
There discussing how best to move forward and also what is likely the most practically able sad ending to this case.
It sounds harsh but I cannot help but think judge has had a few fair points, and tried to least bring about a answer to case that both can agree on.
Maybe they also thought the court hearing might keep things less heated and more likely to achieve a more agreeable end to case.
Someone did need to ask the questions he did, and it might sound diffrrnt from the judge. Its a sad ending, but it does not have end like a circus.
Stated as not wanting people to leave without some form of agreement or understanding being reached.
They're specifically places to die. Everyone there is either there to die, care for people who are there to die, or visiting someone who is there to die. There's no amount of brilliant care, fantastic facilities, and dedicated staff that can get around that. It's one thing if you're there as/with someone who has had a decent shift, but having to take an infant is rotten.
That they may be, but they are also places that provide care, support and as much dignity and relief from suffering as they can for the dying and the family. Children's palliative hospices do everything they can to provide the best support they can to all involved. No matter where someone goes when they are in the final stages of a terminal illness they are their to die. My experience has been that good support and acceptance of this fact before death by the friends and family makes the grieving and loss much easier to accept.
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xKillGorex wrote: My heart goes out to the parents like everyone else on here, nobody should face having to bury their child.
My son was born in 2012, two months premature, as soon as he was out he was taken away to the special care so they could get to work on him all the while my wife is seriously il and drugged up to the eye balls.
After an hour I get to go down to the unit to meet the little guy only to told to prepare for the worst, it was the most crushing moment of my life. After a week my partner is able to come but it took another 5 weeks to get my son home and even then there were visits to the hospital every two days to get him checked out. As I said that was five years ago and has just finished his first year in school and Jesus I thank god everyday how lucky I was that he was fine in the end.
I've never been so great full to a group of people like I have to the NHS team that looked after him 24hrs a day for all that time.
SCUB nurses do an amazing job. My son was only in SCUB for a short time, but I could not have asked for anything more from them. Both the care they gave him, and the care they gave me and my wife. I'm so glad I got to go with him from the delivery suit to the SCUB. I don't think I could have waited an hour to see him! I sympathise with you having to wait. It must have felt like an eternity.
I remember asking them if am could touch him as he was in the incubator and taking so many photos over that night. I'm so glad my wife had her phone with her. I sent her so many photos as she couldn't walk.
I am frankly a bit disgusted with a number of these arguments defending the decision to let this baby die. Do I think this would have saved his life? No; But the parents who raised the money independently should have at least been given the chance. I don't know if any of those who supported this decision have children but I can tell you that when you do, you will attempt to move heaven and hell to get them anything they need to survive.
On the medical side of this equation, no this wouldn't have saved his life but this was a willing participant in a study that would have yielded untold amounts of information in regards to the new treatment/drug and could have saved lives down the line.
I fail to see any downside to allowing these parents the right to attempt to save their babies life. What I do see though is a very big and real reason why I will fight against National Healthcare in the US.
This has nothing to do with national healthcare system. This is the exact same choice doctors make every day throughout the world. Our healthcare system had nothing to do with it. I suggest you read the statement by GOSH.
He was not a willing participant in anything, and trying an untried treatment on a baby for the information would be deeply unethical.
As about, I have a child, of about the same age. I love him more than anything, and I could not imagine letting him suffer like that.
Hospices are a place of death that's true, that's their purpose by design. And I don't know how Hospice is set up in the UK.
But Hospice is also a place where the stigma of death is absent, where mourning is allowed to begin before death is actually here. Where family and friends are able to grief with the dying person present, and begin the long process of healing much earlier than many who still focus on healing rather than comfort.
Hospice gives dignity, comfort, and they truly have an ability to focus on the whole family and they will be able to provide emotional care to the family while providing palliative care to the child.
Hospice is so much more than "go there to die" or "we've given up, so death it is". Hospice doesn't stop the treatment to provide comfort and relief to the patient, it just stops the treatment that attempts to cure (treatments that often make the person suffer more in their final time than they would without, often for marginal benefits). It's not a decision to die, it's a decision on how so spend your final time while still alive. In the US we have hospice homes, hospice units in hospitals, and also hospice services that will assist patients who choose to spend their final moments at home.
On the "have more empathy d-usa" front: My youngest daughter went to the NICU because she could not breathe when she was born, and was placed on the vent. It made me feel helpless and useless that I was unable to do anything for her as a medical provider, and I was mentally preparing myself for the reality that she could be dead before she even had a chance to experience her first sunrise. It was a horrible feeling to try to come to terms with the fact that your child can be dead before you even had a chance to know her, or for her to know you. She came so close to death, and I came so close to loosing my child, but we were lucky. So I know what it feels like to anticipate the death of your child, I have the compassion and empathy for those who are watching the death of their family member. I get it. But I also took an oath to speak for the voiceless, and when it comes to patients that is my focus.
For the record, I think hospices are a good thing in most cases for most people, but I also think they lose much of their use when you are dealing with an infant or young child.
SemperMortis wrote: I am frankly a bit disgusted with a number of these arguments defending the decision to let this baby die. Do I think this would have saved his life? No; But the parents who raised the money independently should have at least been given the chance. I don't know if any of those who supported this decision have children but I can tell you that when you do, you will attempt to move heaven and hell to get them anything they need to survive.
At the risk of repeating the first three pages of the thread, themselves full of repetition:
On the medical side of this equation, no this wouldn't have saved his life but this was a willing participant in a study that would have yielded untold amounts of information in regards to the new treatment/drug and could have saved lives down the line.
An 11 month old child cannot be a willing participant. It is not morally acceptable to use a child as a guinea pig on a totally untested treatment. Extending the child's life may well be extending extreme suffering.
I fail to see any downside to allowing these parents the right to attempt to save their babies life.
The possibility of forcing a child to continue to live in what may be very extreme and continual pain.
SemperMortis wrote: I am frankly a bit disgusted with a number of these arguments defending the decision to let this baby die. Do I think this would have saved his life? No; But the parents who raised the money independently should have at least been given the chance. I don't know if any of those who supported this decision have children but I can tell you that when you do, you will attempt to move heave and hell to get them anything they need to survive.
On the medical side of this equation, no this wouldn't have saved his life but this was a willingly participant in a study that would have yielded untold amounts of information in regards to the new treatment/drug and could have saved lives down the line.
this was a baby who had no personal agency to willingly or unwillingly participate in anything. This wasnt a study, it wasnt a trial, it was a blind hail mary attempting to use a screwdriver as a hammer.
This treatment was not designed, intended, tested or expected to be used on someone with this child's set of circumstances.
It was "we'll try anything because we're desperate and this was a thing had some of the same words our doctors used, it wont reverse any existing damage thats basically terminal itself, but lets do it because grief is pushing us to try anything!" type deal.
I fail to see any downside to allowing these parents the right to attempt to save their babies life.
aside from the trauma of heaving a terminally ill child to the other side of the planet to undergo major medical procedures in the hope of squeezing a couple extra years of life out of a child who now (and would continue to) suffers from seizures, severe brain damage, unable to move their limbs, etc.
What I do see though is a very big and real reason why I will fight against National Healthcare in the US.
except this had zero to do with national/socialized healthcare, this was medical professionals bringing a medical ethic issues through the court system. Happens in the US with some frequency, such as when parents refuse life saving blood transfusions on religious grounds.
Essentially, if you recall scenes in movies where someone is trying CPR long after the point where it is clear there's no point and someone lays a hand on their shoulder and says "enough", thats whats happening here.
SemperMortis wrote: What I do see though is a very big and real reason why I will fight against National Healthcare in the US.
This happens every day in the US, in hospitals run by the Government, Religious Hospitals, Non-Profit Hospitals, and For-Profit Hospitals. The United States withdraws treatment from patients against the wishes of family members every single day, using the same process that was utilized in this case.
SemperMortis wrote: What I do see though is a very big and real reason why I will fight against National Healthcare in the US.
This happens every day in the US, in hospitals run by the Government, Religious Hospitals, Non-Profit Hospitals, and For-Profit Hospitals. The United States withdraws treatment from patients against the wishes of family members every single day, using the same process that was utilized in this case.
How many parents in US could afford 8 months plus of high level ICU care 24/7 and services of a 2 international Doctors, elite medical teams and a specialised hospital..
SemperMortis wrote: What I do see though is a very big and real reason why I will fight against National Healthcare in the US.
This happens every day in the US, in hospitals run by the Government, Religious Hospitals, Non-Profit Hospitals, and For-Profit Hospitals. The United States withdraws treatment from patients against the wishes of family members every single day, using the same process that was utilized in this case.
This. It's nothing special about the NHS. Every time somebody uses this argument, it really shows the lack of understanding in how healthcare actually works.
SemperMortis wrote: What I do see though is a very big and real reason why I will fight against National Healthcare in the US.
This happens every day in the US, in hospitals run by the Government, Religious Hospitals, Non-Profit Hospitals, and For-Profit Hospitals. The United States withdraws treatment from patients against the wishes of family members every single day, using the same process that was utilized in this case.
How many parents in US could afford 8 months plus of high level ICU care 24/7 and services of a 2 international Doctors, elite medical teams and a specialised hospital..
Unrelated and anecdotal:
My grandmother is visiting from Germany and fell on Friday and was taken by EMS to a hospital here. She had international coverage on her German insurance plan, and that information was given to the hospital. While in the ER, someone from administration was telling my family members there that unless they are putting down a cash deposit or a credit card, they would stop treatment and discharge her from the ER. When it became clear that she required admission it changed to them my family "she can be admitted, but she won't be able to be discharged unless there was a cash deposit or credit card on file".
At this point I called them to let them know that we'll be forwarding this interaction to CMS and Joint Commission to investigate an EMTALA violation, and that's when everybody stopped harassing my family about payment.
My grandmother is visiting from Germany and fell on Friday and was taken by EMS to a hospital here. She had international coverage on her German insurance plan, and that information was given to the hospital. While in the ER, someone from administration was telling my family members there that unless they are putting down a cash deposit or a credit card, they would stop treatment and discharge her from the ER. When it became clear that she required admission it changed to them my family "she can be admitted, but she won't be able to be discharged unless there was a cash deposit or credit card on file".
At this point I called them to let them know that we'll be forwarding this interaction to CMS and Joint Commission to investigate an EMTALA violation, and that's when everybody stopped harassing my family about payment.
Absolutely disgusting.
I can see something about non immedietly life threatening treatment but an Emergency room?
I guess I am completely wrong about this, and all those news stories and facts about families keeping relatives on life support for years after they had been ruled brain dead never happened.
You guys should probably have told these facts to Terri Schiavo's husband so he could have ended her life against the wishes of her parents 7 years earlier....
Ok, but you have to stop drawing false equivalencies.
This little lad was already essentially out of options, then he had seizures which caused brain damage that compounded the issue. His mitochondrial disorder was already essentially a death sentence, this isn't the same as someone suffering a brain injury and then cheating the odds.
I'm not going to pretend for one second I don't understand the thought processes of the parents, especially as it appears there may have been agendas at work that's led them towards false hope, but the kiddy had no hope from birth.
Azreal13 wrote: Ok, but you have to stop drawing false equivalencies.
This little lad was already essentially out of options, then he had seizures which caused brain damage that compounded the issue. His mitochondrial disorder was already essentially a death sentence, this isn't the same as someone suffering a brain injury and then cheating the odds.
I'm not going to pretend for one second I don't understand the thought processes of the parents, especially as it appears there may have been agendas at work that's led them towards false hope, but the kiddy had no hope from birth.
I have drawn zero false equivalencies, I agree with everything you said. I just don't see why the parents were denied the right to try. It would cost the government nothing and could have advanced medical knowledge that might have saved lives down the line. This is basically a case where the government and medical professionals got to over ride the parents legal rights because they felt they knew better. Now I do understand that sometimes this is both important and necessary, as in the examples mentioned above. But ironically, in all those situations its the parents refusing a treatment that might save their child's life so the state/medical field steps in and supersedes the parents desires, I haven't seen anyone mention a case where the government/medical field steps in to stop a possibly life extending treatment.
It's because the doctors are there to look out for the best interests of the patient.
His parents, caring as they are were not the patient. They believed he had suffered enough, and the "treatment" would only extend his suffering, so pulling the plug was in his best interests.
d-usa wrote: They step in every day, when nobody else advocates and speaks for the patient.
So his parents weren't advocating or speaking out for their child? No, they were, they just disagreed with the medical professionals and were therefore over ruled. And that doesn't happen in the US. Schiavo was finally allowed to die because the person who had the most say in her personal welfare was her husband and he was the one fighting her parents to pull the feeding tube. If her husband had said, yeah lets keep her on it and hope for the best they would have continued to do so.
SemperMortis wrote: I guess I am completely wrong about this, and all those news stories and facts about families keeping relatives on life support for years after they had been ruled brain dead never happened.
You guys should probably have told these facts to Terri Schiavo's husband so he could have ended her life against the wishes of her parents 7 years earlier....
Don't make up facts to back up your claim.
Nobody is making up facts, you're confusing different issues in different places with different rules with different circumstances at different times, emotionally deflecting to another similarly politically charged event.
Again, there was never any hope the kid would get better, even if the US treatment were 100% successful, at lottery level odds, he'd still be a human potato on a very short countdown clock. The child was not going to get better, even the US doctor made that clear, only the mitochondrial degradation would have been addressed, but not the already extant damage caused. The treatment would not have affected that one bit.
The "he's dying anyway, go ahead and just do whatever experiments you want to him" line of thinking is one discouraged by the medical community for a reason.
It does happen in the US. All the time. I'm not going to post examples of cases as that is not appropriate, and will just get in to arguments over details, but here is some national health institute papers on the background of withdrawal of treatment.
Azreal13 wrote: Ok, but you have to stop drawing false equivalencies.
This little lad was already essentially out of options, then he had seizures which caused brain damage that compounded the issue. His mitochondrial disorder was already essentially a death sentence, this isn't the same as someone suffering a brain injury and then cheating the odds.
I'm not going to pretend for one second I don't understand the thought processes of the parents, especially as it appears there may have been agendas at work that's led them towards false hope, but the kiddy had no hope from birth.
I have drawn zero false equivalencies, I agree with everything you said. I just don't see why the parents were denied the right to try. It would cost the government nothing and could have advanced medical knowledge that might have saved lives down the line. This is basically a case where the government and medical professionals got to over ride the parents legal rights because they felt they knew better. Now I do understand that sometimes this is both important and necessary, as in the examples mentioned above. But ironically, in all those situations its the parents refusing a treatment that might save their child's life so the state/medical field steps in and supersedes the parents desires, I haven't seen anyone mention a case where the government/medical field steps in to stop a possibly life extending treatment.
It is because the doctor who said there was a 10% chance of some improvement with his previously untested treatment that wasn't designed for this kind of disease not only had not examined the patient, he had not even bothered to read the case notes before he said that. It then turned out he had a financial interest in the parents turning their son over to his care.
Sorry to say but with this complete lack of any patient care focus, Dr Hirano made himself look much less good a doctor than the DakDak OT Forum panel. There comes a point at which I have to accept that the staff of the world's best childrens' specialist hospitals, plus a group of independent medical experts, actually do know better than some guy who couldn't be bothered to read the case notes.
The BMA have made very strong criticism of Dr Hirano, saying he has much to reflect upon.
d-usa wrote: They step in every day, when nobody else advocates and speaks for the patient.
So his parents weren't advocating or speaking out for their child?
No, they were advocating for themselves. Which happens every day, in all walks of life, with children and adults. And it happens for many reasons. It can be "I'm not ready to loose my family member", it can be "I can't live with the guilt of giving up, it can be "I will feel like I killed my family member", and sometimes it is "As long as that ventilator keeps a heart beating, I'll keep on getting the pension/disability/social security check". People decide things every day, some make those decisions based on what's best for the patient, some make these decisions based on what they can or cannot deal with.
No, they were, they just disagreed with the medical professionals and were therefore over ruled.
Listen, I know it's 2017 and we are living in a world where "feth the experts, we know more than them" has become the norm. But medical professionals get to make these decisions when nobody else makes decisions based on what's best for the patient.
And that doesn't happen in the US.
It happens every single day, in every single hospital. I've been part of these things. We have a very well established legal process for this, and ethical guidelines for implementing them. You might not know about them, but they are there.
Schiavo was finally allowed to die because the person who had the most say in her personal welfare was her husband and he was the one fighting her parents to pull the feeding tube. If her husband had said, yeah lets keep her on it and hope for the best they would have continued to do so.
Courts made the decision with her, same as they made the decision for the child. And in both cases courts relied on the medical expertise of the doctors to make that decision. In both cases it was doctors who have never examined the patient providing opinions that prolonged the cases.
SemperMortis wrote: What I do see though is a very big and real reason why I will fight against National Healthcare in the US.
This happens every day in the US, in hospitals run by the Government, Religious Hospitals, Non-Profit Hospitals, and For-Profit Hospitals. The United States withdraws treatment from patients against the wishes of family members every single day, using the same process that was utilized in this case.
How many parents in US could afford 8 months plus of high level ICU care 24/7 and services of a 2 international Doctors, elite medical teams and a specialised hospital..
Unrelated and anecdotal:
My grandmother is visiting from Germany and fell on Friday and was taken by EMS to a hospital here. She had international coverage on her German insurance plan, and that information was given to the hospital. While in the ER, someone from administration was telling my family members there that unless they are putting down a cash deposit or a credit card, they would stop treatment and discharge her from the ER. When it became clear that she required admission it changed to them my family "she can be admitted, but she won't be able to be discharged unless there was a cash deposit or credit card on file".
At this point I called them to let them know that we'll be forwarding this interaction to CMS and Joint Commission to investigate an EMTALA violation, and that's when everybody stopped harassing my family about payment.
d... that's illegal as all hell. I'd report them to CMS/Joint Commission anyways... even call the local news/paper.
I actually had to sign a commitment with my employer as part of the hiring process to report any EMTALA violations.
I disagree that doctors really truly advocate for their patients. They have no real motivation for that. To them, a patient is just a method to a paycheck. Doctors are also supposed to be emotionally disconnected with their patients just for their own emotional health, and rightly so. Without an emotional connection, you cant truly be an advocate for someone.
I know I wouldn't want a stranger who only sees me as a medical case to advocate for my wellbeing, or the well being of anybody I cared about.
Furthermore. You should never ever use any type of science, medical or otherwise, to make a moral decision. Letting science determine morality is not a place you want to go down.
Doctors should only list what the options are and what the potential outcomes of each are, and i would argue that they should be disallowed from suggesting letting a patient die. That could be seen as leading the patient, or the people making the decisions to a particular conclusion instead of letting them choose on their own.
Grey Templar wrote: I disagree that doctors really truly advocate for their patients. They have no real motivation for that. To them, a patient is just a method to a paycheck. Doctors are also supposed to be emotionally disconnected with their patients just for their own emotional health, and rightly so. Without an emotional connection, you cant truly be an advocate for someone.
I know I wouldn't want a stranger who only sees me as a medical case to advocate for my wellbeing, or the well being of anybody I cared about.
As someone who's spent the last 11 years suffering from a chronic, life limiting condition and has spent more time in and out of hospitals than most people will in a lifetime, I feel adequately qualified to declare this the most moronic thing I've read on this board, possibly ever, and that's you have zero fething idea what you're talking about. Frankly, if you've got any pride, walk away from the thread now and stop posting.
Grey Templar wrote: I disagree that doctors really truly advocate for their patients. They have no real motivation for that. To them, a patient is just a method to a paycheck. Doctors are also supposed to be emotionally disconnected with their patients just for their own emotional health, and rightly so. Without an emotional connection, you cant truly be an advocate for someone.
I know I wouldn't want a stranger who only sees me as a medical case to advocate for my wellbeing, or the well being of anybody I cared about.
Furthermore. You should never ever use any type of science, medical or otherwise, to make a moral decision. Letting science determine morality is not a place you want to go down.
Doctors should only list what the options are and what the potential outcomes of each are, and i would argue that they should be disallowed from suggesting letting a patient die. That could be seen as leading the patient, or the people making the decisions to a particular conclusion instead of letting them choose on their own.
Grey... I work in the healthcare industry and collaborate all the time with providers & clinicians throughout the states.
I don't get that sense that you do.... every clinician (be it nursing, doctors, technicians, whomever else has patient contact) absolutely advocates for the patient & their loved ones. I really don't know how it is in the UK, but I find it hard to believe that those clinicians are that different from we I've experienced here in the states.
There's a lot of moving parts to the Gard ordeal that is troublesome... but, I wouldn't assume that the providers/clinicians are "playing god" here or willingly being cheapskates here.
Can't get enough of people insisting on going on about the parents' legal rights being overruled when they don't have legal authority to decide what happens to the child in the first place. That's literally the entire reason for the courtcases.
Might be worth checking, whenever writing 'legal right', whether what you actually mean is 'what I think should be a/my/their legal right'.
You should never ever use any type of science, medical or otherwise, to make a moral decision. Letting science determine morality is not a place you want to go down.
Could you explain the reasoning here? As it stands that is a truly bizarre statement and before I jump all over it I would love to know if there is some missunderstanding or something deeper to this.
LordofHats wrote: This wholw thread had been a series of tuly bizarre statements from a certain corner.
*pops corn and pulls up chair*
Eh... it's a little bit about parental rights, bioethics and smattering of governmental "protocols".
While it appears that UK laws gives the ultimate final decisions to Hospitals/doctors.
Whereas in the states, it's easier to appeal for continuance.
Maybe the whole underlining issue is that, by and large, almost all families does the necessary thing in dire medical circumstances. It's when there's obvious dictates & coercions (ie, in the Gard's case) that can lead to the fear that a patient is being abandoned.... knowwhatimean?
That's a complete miss representation of the case. This isn't the courts or law giving final say to the doctors. The court heard evidence from other sides and ruled in favour of the hospital. Same as can happen in the US.
What evidence do you have that there was "obvious dictates & coercions", because that's not the case. If you haven't, I suggest you read the statement from GOSH.
Steve steveson wrote: That's a complete miss representation of the case. This isn't the courts or law giving final say to the doctors. The court heard evidence from other sides and ruled in favour of the hospital. Same as can happen in the US.
What evidence do you have that there was "obvious dictates & coercions", because that's not the case. If you haven't, I suggest you read the statement from GOSH.
But if you read the material and get to grips at all with what's happened, you can't flatly claim that evil socialist death panels decided to murder a child rather than spend £50. That just wouldn't do when you've an important axe to grind.
I do find it very disappointing that almost everyone who thinks the court should have the ability to decide what's best based on the facts and the testimony of both family and experts has really stressed that the welfare of the child is absolutely the most important concern, whilst almost everyone taking the opposite position is primarily concerned with the parents' rights or the evils of a National Health Service.
Steve steveson wrote: That's a complete miss representation of the case. This isn't the courts or law giving final say to the doctors. The court heard evidence from other sides and ruled in favour of the hospital. Same as can happen in the US.
What evidence do you have that there was "obvious dictates & coercions", because that's not the case. If you haven't, I suggest you read the statement from GOSH.
Erm... who/what prevented the parents to facilitate that treatment initially?
Doesn't it boils down to this? a) parents want to try additional treatment b) parents somewhere in the timeline (I'm not sure) got $$ from donations that'll cover it c) parents couldn't get the treatment, even though they had the means (right???)
Who/what stopped the parents at step C and why.
FWIW: that GOSH pdf is a hella Public Relations response.
To cut to the chase, the nucleoside wasn't a treatment, it was a piece of shenanigans put up by a doctor who didn't bother to read the case notes, let alone examine the patient, whom the BMA says "has much to reflect on."
That's the polite British way of saying he is a gak bag shyster who should be thoroughly ashamed of his deeply unethical conduct.
whembly wrote: [
Who/what stopped the parents at step C and why.
- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.
The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.
Steve steveson wrote: The courts. Because it was unethical and unproven. We have been through this repeatedly.
Technically it was doctors who stopped them with a court ruling. The court just executed the law in the case presented. The courts did not bring the case, determine the facts, or create the relevant laws and expectations.
But hey, why let anything approaching common sense get in the way of a good bitch fest*
*Not direct at you Steve, but rather certain other parties
Automatically Appended Next Post:
Kilkrazy wrote: To cut to the chase, the nucleoside wasn't a treatment, it was a piece of shenanigans put up by a doctor who didn't bother to read the case notes, let alone examine the patient, whom the BMA says "has much to reflect on."
That's the polite British way of saying he is a gak bag shyster who should be thoroughly ashamed of his deeply unethical conduct.
Speaking of which, isn't this the kind of conduct doctors can lose their license over? Setting aside the presumptive financial gains he stood to accrue, how does one actually propose treatment without looking at the case notes, examining the patient, or their files, or even consulting the attendant physicians with a straight face?
welshhoppo wrote: The same way people on the internet jump to conclusions without knowing the full facts.
Well yeah but we don't have an internet ethics board to strip someone of their internet points, so I would think a doctor would at least have a little bit more survival instinct with what he says and does.
Or is it just highly unlikely that he'd be put in front of an ethics board for this kind of thing?
whembly wrote: [
Who/what stopped the parents at step C and why.
- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.
The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.
whembly wrote: [
Who/what stopped the parents at step C and why.
- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.
The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.
Yeah, based on that case, the Judge had a strong argument to declare C not happening.
Kilkrazy wrote: To cut to the chase, the nucleoside wasn't a treatment, it was a piece of shenanigans put up by a doctor who didn't bother to read the case notes, let alone examine the patient, whom the BMA says "has much to reflect on."
That's the polite British way of saying he is a gak bag shyster who should be thoroughly ashamed of his deeply unethical conduct.
Speaking of which, isn't this the kind of conduct doctors can lose their license over? Setting aside the presumptive financial gains he stood to accrue, how does one actually propose treatment without looking at the case notes, examining the patient, or their files, or even consulting the attendant physicians with a straight face?
I don't know about the licensing itself... but, this is definitely grounds to lose your credentials to practice at a hospital. (The hospitals performs credentialing to allow MDs to admit/practice at their facilities).
welshhoppo wrote: The same way people on the internet jump to conclusions without knowing the full facts.
Well yeah but we don't have an internet ethics board to strip someone of their internet points, so I would think a doctor would at least have a little bit more survival instinct with what he says and does.
Or is it just highly unlikely that he'd be put in front of an ethics board for this kind of thing?
I'd say it's highly unlikely. Its an experimental treatment after all.
But something tells me I doubt it was expected to go this far and go this big. Apprently he could have seen Charlie at the start of the year, long before it was blown up this big.
whembly wrote: [
Who/what stopped the parents at step C and why.
- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.
The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.
But DEATH PANELS! Government taking away choice! Parents rights! ARGLEBLARGLECTHULHUFTAGN!
Not fair. Credit to Whembly for reading the posts and thinking seriously about the issues in the round.
To get back to the case, the legal decision now revolves around the practicality of enabling the little boy to go home to die. To put it bluntly, he needs so much life support that it may be impossible to move him to a normal domestic situation as he would simply die when he got there.
Kilkrazy wrote: Not fair. Credit to Whembly for reading the posts and thinking seriously about the issues in the round.
To get back to the case, the legal decision now revolves around the practicality of enabling the little boy to go home to die. To put it bluntly, he needs so much life support that it may be impossible to move him to a normal domestic situation as he would simply die when he got there.
They already said they do not think the required ventilator cannot fit the stairs or the door.
Its portable... In a hospital ward, or designed environment to fit this kinda kit.
Maybe not so domestically.
And may require a trained nurse or medical expert to monitor the machines. They need tending n monitoring, and I doubt they could train the Grads on one in a few hours.
Not quite the private family environment.
Frazzled wrote: A sad situation all around and an instance where there are no bad people.
Yes, but the American Doctor sounds slightly less trustworthy now given the above facts coming out.
Proposing treatments that would enrich you personally sounds less than independent medical advice.
Frazzled wrote: A sad situation all around and an instance where there are no bad people.
Except the American dr giving false hope and briefly the pope trying to get positive pr by pretending they could help there by negating 50 years of child sex abuse, because they offered false hope also to grieving parents.
whembly wrote: [
Who/what stopped the parents at step C and why.
- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.
The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.
But DEATH PANELS! Government taking away choice! Parents rights! ARGLEBLARGLECTHULHUFTAGN!
whembly wrote: [
Who/what stopped the parents at step C and why.
- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.
The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.
I like how you broke it down.
I'm really not reading anything he says anymore, because as a medical professional I know he's just in it to make a buck and doesn't care about anything else.
whembly wrote: [
Who/what stopped the parents at step C and why.
- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.
The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.
I like how you broke it down.
I'm really not reading anything he says anymore, because as a medical professional I know he's just in it to make a buck and doesn't care about anything else.
Sad thing is that's mostly what US medical System is now a for profit industry
whembly wrote: [
Who/what stopped the parents at step C and why.
- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.
The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.
I like how you broke it down.
I'm really not reading anything he says anymore, because as a medical professional I know he's just in it to make a buck and doesn't care about anything else.
I know you say that in jest...
But, I think there's this unfair perception that medical professionals (in whichever system) are mercenary for the almighty dolla.
whembly wrote: [
Who/what stopped the parents at step C and why.
- The fact that the only physician advocating for it has admitted that he did not know anything about the actual case.
- The fact that the sole physician advocating for it has a financial stake in the treatment and would be personally enriched by the money that was raised.
- The fact that the sole physician advocating for it has admitted that it has zero curative potential.
- The fact that the treatment was not developed for a case like this and has not had any trials, not even animal to determine the effects or safety of the case.
- The fact that every single professional who actually examined the child and knew about the case agreed about the eventual outcome of doing this study: no gains, longer suffering.
The reality of the case is that this child was nothing more than a glorified lab rat in the eyes of a physician who would gain financially from experimenting on him, and that physician was somehow able to go "I may not be a smart doctor, but I know what hope is" and convince a whole lot of people that he knows what he is talking about. Parents clinging to hope, even false hope, get desperate and make decisions that may not be in the interest of the child. And physicians who actually knew the case argued before an impartial judge that the child would not benefit from becoming a lab rat.
I like how you broke it down.
I'm really not reading anything he says anymore, because as a medical professional I know he's just in it to make a buck and doesn't care about anything else.
Sad thing is that's mostly what US medical System is now a for profit industry
Now?
The compassion and caring of the people providing care is what's keeping Americans alive. But "market based medicine" has been a thing for a very long time.
Tying reimbursement to outcomes was a good first step to solve that.
Frazzled wrote: A sad situation all around and an instance where there are no bad people.
Yes, but the American Doctor sounds slightly less trustworthy now given the above facts coming out.
Proposing treatments that would enrich you personally sounds less than independent medical advice.
Fair point. I meant the UK doctors and the parents. Good catch.
A million raised so some want to spend it in the hope of saving the child, and charging large fees while doing so. This hasalready bee commented on.
Others who see little hope for the child might be thinking: what to do with the money raised.
Funds of tis nature are a drop in the ocean compared to medical expenditure as a whole but as far more valuable than the sum total raised because it is unattributed.
Most funding is earmarked for one project or other one department or other etc, Unattributed finding can be used for anything, and from experience of observation what a government body or charity gets unattributed funding, it tends to go on salaries. Most charity funding from major sources, for example lottery grants and constrained by what they are for. Id you are raising funds from the public for a specific goal, by law tat is where he money must be spent. Money going in rattle tins etc can be spent freely.
Great Ormond Street hospital has a rep for care of children, and it is well deserved. It also shields the charity from fair critique, though not always. There were comments in the press at how Great Ormond Street is very top heavy, with a large number of non medical personnel on fat cat salaries, media directors and RP team especially.
While they could save the child if they could, as he money has been raised and the child likely cant be saved that money may very ell disappear now and go into the bank accounts of already grossly overpaid bigwigs as bonuses.
I believe it was raised via gofundme or similar, and is in the control of the parents, not GOSH, so I'm not sure how much of what you say is applicable.
Especially as a quick Google shows that his parents have donated it explicitly to help treat other kids in the US now they've conceded that Charlie won't receive the treatment.
Azreal13 wrote: I believe it was raised via gofundme or similar, and is in the control of the parents, not GOSH, so I'm not sure how much of what you say is applicable.
Especially as a quick Google shows that his parents have donated it explicitly to help treat other kids in the US now they've conceded that Charlie won't receive the treatment.
Yeah. They are ones in charge of the funds raised. However they might raise eye brows if they pulled up home in a Porsche but GOSH, NHS are no part in fund management.
Court case carries on from i think 1PM today.
so we shall see if Charlie can go home.
However the Logisitics from a Hospital, Via, Helo, to a Private waiting mediac, all custm build seems alot different to a adhoc set up in a flat with a door there unsure the it can get through .
Seems a builder offered to alter doors, but how long will that take?
Some of this planning would surely of needed to happen weeks ago.
A hospice is a good situation, mid-way between the clinical sterility of a hospital Intensive Care Unit and the technical impossibility of adapting the family home.
It is time for the parents to let go. At a very blunt level, the more they prolong their son's ordeal, the more resources they divert from the support of other infants who might have a realistic chance of a better life.
Kilkrazy wrote: A hospice is a good situation, mid-way between the clinical sterility of a hospital Intensive Care Unit and the technical impossibility of adapting the family home.
It is time for the parents to let go. At a very blunt level, the more they prolong their son's ordeal, the more resources they divert from the support of other infants who might have a realistic chance of a better life.
Best they could do short of someone donating the use of a large London ground floor flat with least 3-4 bedrooms probbly to fit all the required medics, the family and gear they need to keep him alive.
It would have been nice if there would have been a way for them to finally take him home, but sounds like he wouldn't be alive long enough to make it there.
d-usa wrote: It would have been nice if there would have been a way for them to finally take him home, but sounds like he wouldn't be alive long enough to make it there.
It was not that. They could move him with life support but the kit was too large to get in flat, and needed a 4-5 strong medical team with him to monitor gear as a ICU nurse and doctor, specialist doctors and nurses to support.
Its abit too much for a London flat.
Not the private, and quiet family time they after.
I don,t think anyone has answered questions like did it have the power ampage to support all that kit, security for Doctors and Nurses due to media etc, media, they know the address, and would be vultures. Was there room for all the gear and staff.
There needed to be a plan for quite a few things.
Also impact on area.
Bringing a hoard of media down on a London residential street.. Might upset there local neighbourhood of things become chaotic circus.
The hospice is secret, so the media issues is less of a problem long as people keep mouth shut.
That's what I was getting at, for him to go home it would require to unhook him from everything. So even if we would go home to die, he would likely be dead before making it.
I know when our little one was in the NICU one of the worst feeling we had was when my wife was discharged and we went home without our daughter and the empty car seat in the back.
There's portable gear. But again for ICU, portable is not always so small.
From portable battery gear to ambulance with own ringmain power supply and heavy duty battery backups. And home inside on battery to inside on mains.
It could be done. They had worked out how to medivac to jet if going to USA. But that I think used a air ambulance for speed and less jolts, and again, had own heavy duty full power system on board.
But there where tons of issues.
To do would of taken weeks of planning id think. And a flat or location with more space and fairly easy access from road. Minimal stairs, and wide doors.
That sounds tough, least there happy, healthy and thriving now though hopefully.
I was in Hospital for a week or two as a baby as I was underweight. Hospitals peform some nigh on miracles at times.
jhe90 wrote: That was quick. I thought they had nurses and a doctor willing to volunteer to cover a few days care.
One doctor volunteered to do so at home but was woefully underqualified and presumably didn't have the expertise to actually determine how long he'd be covering for. I don't think anyone mentioned any timescales that they expected the baby to last after being moved. The final court hearings were about how long they could delay turning off support so I guess the expectation was that death would be near-instant once care was stopped.
I've got 2 kids. A 3 year old girl and a boy more or less Charlie's age.
Reading in the newspaper, on the news, all I could think was "Why are you doing this?"
Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.
Freddy Kruger wrote: Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.
Disgraceful.
They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.
Freddy Kruger wrote: Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.
Disgraceful.
They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.
Uf we trust the GOSH court section.
The offer was made before he had seen tests, and full info.
Had not got tests.of any kind to back his claims
Had cause to gain money from the treatment /future success and deployments of it.
All in all, I think sadly desperate parents had what seemed like a amazing offer but crumbled under the judges harsher questions/GOSG QC.
The Doctors bound by medical rules could not say as much, as the parents etc.
Freddy Kruger wrote: Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.
Disgraceful.
They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.
Given I'm sure Ives heard it said that they thought they could have had a healthy, happy baby if treatment hadn't been withheld/had been applied sooner, and given what I understand of his condition meant he was unlikely to survive for more than a few years irrespective of medical intervention, I'd say they'd been given some pretty big promises from somewhere that didn't have any real substance.
Babies and infants die all the time, let alone all the cases of stillborns, even in western and modern countries.
It's horrible, but that's the way it is.
I know that "hope is the last thing that dies", especially from the parents point of view, and I know that this sounds cynical, but I get the feeling that Charlie suffered needlessly, and it would've been for the best if he had died sooner. That way more time would've been freed up for the nurses and doctors to treat other patiens, and his parent would've been able to start moving on earlier. This case isn't that different from many other cases of babies suffering from terminal diseases - it just got the medias attention.
Basically, sometimes you just need to let go.
This story is horrible, but it's nothing new, and it wont be the last time it happens.
And before I get bashed for being a coldhearterd bastard, I'll just mention quickly that I have a sister that was stillborn. Not as bad as having a 11 month old sibling die, but none the less...
Freddy Kruger wrote: Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.
Disgraceful.
They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.
Given I'm sure Ives heard it said that they thought they could have had a healthy, happy baby if treatment hadn't been withheld/had been applied sooner, and given what I understand of his condition meant he was unlikely to survive for more than a few years irrespective of medical intervention, I'd say they'd been given some pretty big promises from somewhere that didn't have any real substance.
There's also quality of life.
I'm all for saving lives if people have a chance to live a life, properly to some standard.
Sadly in Charlies case that was not going to happen.
Out medical aid is so advanced we can keep people alive in states that they are up to brain dead, Coma for years, when there totaly forgotten who they are and who family is and more.
The question has become not if we can, but one of when we should stop and when the treatment does more harm.
Its a very difficult situation to make choice.
Even if the treatment had worked, he'd have little to no sensory system, he would die just as he was beginning to understand the world. He'd need full time care. His parents would have little to no life for the time that he is alive and you'd only be delaying the inevitable.
Freddy Kruger wrote: Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.
Disgraceful.
They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.
Uf we trust the GOSH court section.
The offer was made before he had seen tests, and full info.
Had not got tests.of any kind to back his claims
Had cause to gain money from the treatment /future success and deployments of it.
All in all, I think sadly desperate parents had what seemed like a amazing offer but crumbled under the judges harsher questions/GOSG QC.
The Doctors bound by medical rules could not say as much, as the parents etc.
I'm aware of what you're saying. What I'm saying is at the time the parents made that call, it seems very likely they didn't know that, so it seems wrong to judge them now based upon that. At the time, they thought they had the best interests of their kid at stake - just like all the other player did, except for the one US doctor who really is responsible for this whole mess.
Freddy Kruger wrote: Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.
Disgraceful.
They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.
Uf we trust the GOSH court section.
The offer was made before he had seen tests, and full info.
Had not got tests.of any kind to back his claims
Had cause to gain money from the treatment /future success and deployments of it.
All in all, I think sadly desperate parents had what seemed like a amazing offer but crumbled under the judges harsher questions/GOSG QC.
The Doctors bound by medical rules could not say as much, as the parents etc.
I'm aware of what you're saying. What I'm saying is at the time the parents made that call, it seems very likely they didn't know that, so it seems wrong to judge them now based upon that. At the time, they thought they had the best interests of their kid at stake - just like all the other player did, except for the one US doctor who really is responsible for this whole mess.
What I'm saying is the.Doctor was in the wrong and exploited a desperate family for personal gain..
I know when our little one was in the NICU one of the worst feeling we had was when my wife was discharged and we went home without our daughter and the empty car seat in the back.
We felt the same way when it happened with my wife and our son. Watching her trying to breastfeed once his lungs had developed enough and (the first few times) failing was pretty heartbreaking too.
Leaving the hospital with him a week later made up for a lot though.
Hope something like it won't happen this time (she's due in January).
When our second one was born and started crying, which the first one wasn't able to do, I cried like a little baby myself as the stress and anxiety about a potential repeat washed away.
I get both perspectives, medical caretaker and parent, in situations like that. After the scare and NICU stay our first has turned into a wild 3 year old.
There is no doubt about this, its pretty sad all around and stuff like this get repeated every day all around the world, and the vast majority we don't hear about let alone debate. Its easy to say its life but when it involves one of your own that you would die for, I am sure many just dont want to give out hope.
Something I saw when I was in college I will never forget. I was in a book store on a weekday afternoon, and in the CD section (this is when some book stores also sold music), I saw a mother flipping thru CDs while she had her son with her. He son must have been around 12 or so, and was in this crazy wheelchair-like device with all sort of gear. From my point of view, he was a vegetable, but I had no idea of his actual medical state. I felt bad for the mother, who seemed to be in her mid 30s, attractive, obviously educated and doing pretty well, devoting her life to her son.
I say that because this chair-thing didn't seem easy to take around. To hook the kid up, take him out to transport him, etc, must have take a lot of effort. And here she was, shopping in a book store, trying to live a normal life, taking her son along who didn't seem to realize a world existed.
I assume that her husband worked (as this was like a Tuesday afternoon), and made enough to provide for the family. She was dressed well, and taken care of. Even the kid was dressed well too. So I assumed the guy's career allowed for her to devote 100% of her time to her son.
What I thought about seeing this tho, and I wonder what happens to many, is what happens if the kid should out-live their parents? Its probably rare that this happens, but what if a parent passes away and now a single parent cannot provide the care or money to live? What if both parents pass away and this child is left? I highly doubt whatever system they get put in wouldn't care for them like this mother was. And I am not sure what that cost is to tax payers either.
I am not sure what the answer is. On one extreme, devoting so much to a person who will never amount to anything seems like a waste of effort. The Spartans and Nazis dealt with situations like these in pretty brutal ways. On the other hand, understanding the bond and love a parent has for their kid is admirable too. I asked my friend who has a kid what he would do if his daughter became like that, and he just thought for a second and replied, "I would take care of her."
So at the end of the day its really about love. You cant be too hard on Charlie's parents, they were just trying to do whatever it is they could, even if its more obvious to us there wasnt anything they could do.
d-usa wrote: It is also worth to note that this same thing happens every day in hospitals around the world, including the US.
It's not even about "is this a waste of money" as it is often portrayed. It's about the ethical issue of "are you treating the patient" vs "are you treating the family and prolonging the suffering of the patient or keeping a corpse alive for their sake".
I've also taken care of way to many people that were the victims of family members who were emotionally unable to deal with the reality that was facing them. I've had to stand up to many family members who tried to bully the patient into making different decisions. I've had lawsuits threatened against me because I made sure the patient was able to use her voice, because the family was not ready for reality even though she was. It's hard enough to do when the patient is able to speak for him or herself. It's even harder to do when the patient does not have anybody speaking on his or her behalf. At some point someone needs to speak for the patient and think "what is best for him and what would he want".
Every article is talking about how hard this is for the parents, but the hard cold reality is that the emotional well being of the parents doesn't matter one single bit. It's the patient that matters and that's the only thing that matters. You don't do anything to a patient just because it will make a family member feel better. That's the problem in a lot of medicine.
There are a lot of bodies with zero quality of life who are suffering for years hooked up to machines while their body is slowly shutting down, for the simple reason that a family member is saying "I am not ready to deal with this reality yet and I'm not ready to have a dead parent". So we shrug our shoulders and say "sorry lady, gotta suffer because we don't want your daughter to be sad". Because the person who has a voice is using that voice for herself, while the patient remains voiceless.
It's easy to judge the actions of panels who make these decisions, but it's hard to actually be on them and make the decisions. The best thing that can come out of this is to realize that we need a system that is able to give a better voice to those without one, and to realize that family members are not the patient.
