Charlie Gard has passed

[irosie91]

as to Charlie-----the available dietary manipulations useful in mitochondrial DNA issues-----is
supposed to AMELIORATE the damage caused by -----as far as I understand----the "toxic" products
of catabolism------the treatment is NOTHING DRAMATIC -----or INVASIVE -----I can fathom NO
REASON TO DENY THEM TO THE SICK KID------parents with dying children seek anything
that seems like life -----if the baby would just GURGLE----seem responsive----it would help ----them.
Not a bad thing. There is no evidence that I know of that suggests that the baby was 'suffering'

 

[Tommy Tainant]

There was NO REASON for a high level researcher to become PERSONALLY EMBROILED in an International dispute. He's NOT a patient advocate.

They take people torn to bits and transfer them in HOURS to facilities that specialize in repairing them. The receiving Physicians have EVERYTHING THEY NEED by elect. communication before the patient arrives.

What Dr Hirano NEEDED -- was the baby patient IN HIS FACILITY to determine the efficacy of treatment. Could not DO THAT by flying to Britain. This is a FACT for most custom Gene Therapies.

You and Coyote and Tommy keep repeating this --- but NONE OF YOU can tell me --- WHY Dr Hirano NEEDED to go to Britain...

He can not oversell his therapy. He was not interested in a long contentious debate with the ENTIRE NHS single-handedly.. That's not his "mission"...

By December Charlie had already deteriorated and was undergoing severe seizures indicating bad brain damage as is typical with this disease. Rather than fly a fragile baby on a lengthy transatlantic flight isn't it better for the doctor to first come and examine the child and his records first? You can do a lot remotely but not everything. It's only 48 to 72 hours of the doctors time to determine if the treatment was an option.

Also...why did the doctor offering the treatment not even examine the records until much later?

Doctors do not examine any records unless the patient is about to become their patient. It serves no purpose to just go over records.

Specialists examine records all the time if they are called into consultation or considering taking a case.

Not until they know that they are taking the case.

I doubt that. No reasonable doctor would take a case without first looking at the records to see what the facts of the case are. When we get referrals to specialists, for example, quite often records are sent ahead of the appointment. Same with consults among doctors.

When my ankle was reconstructed there was a case conference with specialists from several hospitals. They used that skype thing. I felt quite special.
I do think that you are wasting your time trying to educate these people. They know what they know and are impervious to anything that runs counter to that.
It has nothing to do with poor Charlie Gard either.

 

[badger2]

Did Charlie Gard receive anesthesia or not, and for which MRI?

 

[flacaltenn]

Because children aren't property.

EVIDENTLY children are property of the STATE in the UK. That's one Clinton "Village" I would FLEE from. Not only were Charlies parents not in the Guardian position with regards to his health care, but STATE APPARENTLY takes the Guardian position in any LEGAL trials.

Is THAT the "Village" -- you leftists want to create here? Good damn luck with that.

 

[Coyote]

Once the doctor knows the patient will be their patient they will look at the records.

No doctor was called in as a consulting doctor for Charlie Gard so the mention is specious.

There is only one issue and it is not whether any doctor should have reviewed the records.

The sole issue is that these people could pay for medical care and was legally prohibited from receiving that care. That's it.

Today Charlie Gard, tomorrow it's grandma with a broken hip and money in the bank. Once the government says no medical care, even if you could pay, you die and that's just the way the government wants it.

Except that isn't true. And Britain has had some form of NHS since about 1948. Grandma still gets her broken hip fixed, and those with money can seek treatment outside of the system.

 

[badger2]

It can't lie. It has to document if anesthesia was used. Any anesthesia used before 23 March 2017 is a different anesthesia, because GOSH can't claim to have known about azisevoflurane until then. This does not mean that GOSH could not have secretly known about it before publication. It's not a little matter, because azisevoflurane profoundly answers questions as to the mechanism of action of sevoflurane, which would be the likely agent used on Charlie Gard. Until 23 March 2017, anesthesiologists were only pretending to know what it does. Cough up the records, GOSH.

 

[flacaltenn]

There is the implication that GOSH is substandard and knows less than outside specialists is wrong. GOSH is one of the most respected and well-known children's hospital in the world. It's world class and has research facilities for mitochondrial disorders. Like many specialists faced with a patient with a rare and terminal illness - they consult with other specialists and researchers in that field.

Yet it has been the subject of vile attacks over this case that are unwarrented. This article makes some good points and asks hard questions (that don't have right or wrong answers).

Charlie Gard: A case that changed everything? - BBC News
The tarnishing of a famous hospital

Great Ormond Street Hospital (GOSH) is perhaps the most respected and well-known children's hospital in the world. It has been synonymous with excellence ever since it was founded in the 1850s with patients from all over the world now being sent there for pioneering treatment.

And yet in the course of this case it found itself under attack with some staff reporting they had been victims of "vile" abuse and threats (Charlie's parents, Chris Gard and Connie Yates, also reported that they had been the target of abuse on a daily basis.)

One of the problems the hospital faced, particularly as the case developed and the parents received more media attention, was that it simply could not win.

While Charlie's parents gave television and newspaper interviews and made pleas on social media, GOSH was left to rely on media statements and court papers to explain its position. The hospital said it was not possible to give Charlie the non-invasive treatment - a powder that could be added to his food - that his parents felt could help him in his battle with mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage.

Rational, scientific logic was never going to win hearts and minds against the raw emotion of parents trying to do everything they could for the severely ill baby.

Should more have been done by the world of medicine? As the case developed, GOSH started publishing more details about the case and its position.

But Prof Uta Frith, an expert in cognitive development at University College London, wonders if there is a lesson here, arguing science cannot be entirely stripped of its emotional context.

"We can never be 100% certain about our facts and theories. Emotion, which is utterly certain, wins in comparison.

"However, scientific reasoning cannot be completely stripped of emotion. Perhaps this is an asset we need to cultivate more. Reasoned evidence needs champions to engage the hearts of people."

But the case - and its importance - also comes down to a dilemma that becomes more acute as medicine develops. At what point is it appropriate not to treat patients and allow them to die?

These are discussions that go on every day in hospitals - and the overwhelming majority are resolved without major dispute.

Patients coming to the end of life - both the elderly and the young - are now routinely encouraged to discuss advanced care plans setting out how much they want doctors to do when they get closer to death. These plans cover everything from when it is appropriate to resuscitate to when treatment should be withdrawn and a patient moved on to palliative care to help them die with dignity.

Of course in Charlie's case, because he was a baby, this was simply not possible. Instead, he was kept alive on a ventilator while his parents and doctors took to the courts.

The medical profession - bound by the basic tenet of medicine "do no harm" - felt it was in his best interests to let him die with dignity rather than have an experimental treatment that they believed would do him no good. In court they argued he had "no quality of life and no real prospect of any quality of life".

But there is also an ethical dimension to this. Are doctors the right people to determine what constitutes "quality of life"? Do we put too much emphasis on their opinion?​

AND - Parents rights vs the child's - it comes down to a 1989 law designed to protect children. Not socialized medicine - a law designed to prevent child abuse.

The rights of parents

But that brings us on to one of the key arguments put forward by Charlie's parents during the hours of legal discussion - the rights of parents to make decisions for their children.

They believed it should have been up to them to decide what was best for their son. But this is not what the law says.

The 1989 Children's Act, which was introduced following a child abuse scandal in Cleveland, makes it clear that where a child is at risk of harm the state can and should intervene.

Subsequent legislation has followed and a framework has been created whereby the state has been emboldened to challenge the view of parents where they believe children's best interests are not being served.

This sees doctors oppose the decision of parents who are Jehovah's Witnesses and refuse blood transfusions for their children.

The law is also used by councils to take children they believe are at risk into care.

Of course, proving someone is at risk or can be helped by medical treatment is much easier to do than proving a treatment is no longer in the best interests of a child when the parents disagree.

But what was often overlooked in the Charlie Gard case was that it wasn't just the doctors against the parents. Charlie also had an independent guardian who agreed with the hospital.

Daniel Sokol, a medical ethicist and barrister, says the case has shone a light on this issue. "It reminds us that the rights of parents over their children are not absolute. They are limited by what is in the best interests of the child."

But he says it is interesting that in the US, which played such a key role through the intervention of doctors who said they would be prepared to treat Charlie, and because of President Donald Trump's offer of help, the rights of parents to decide what is best are much more enshrined.

"The wishes of parents and 'surrogates' generally carry more weight, which is why many US commentators have expressed surprise at the hospital's handling of this case," he says.

"For them, the doctors should do what the parents want."​

It's a complex ethical situation imo.

Waste of time. NOBODY is attacking the Hospital. Not EVEN the Parents. The problem lies in the callousness and arrogance of a system that BLOCKS and prolongs an effort to attempt alternate treatment against the WILL of the baby's parents.

Oh WOW -- AN INDEPENDENT -- state appointed Guardian AGREEING with the State. Imagine that. Imagine how happy you'd be in the Soviet Union or East Germany..

 

[flacaltenn]

Once the doctor knows the patient will be their patient they will look at the records.

No doctor was called in as a consulting doctor for Charlie Gard so the mention is specious.

There is only one issue and it is not whether any doctor should have reviewed the records.

The sole issue is that these people could pay for medical care and was legally prohibited from receiving that care. That's it.

Today Charlie Gard, tomorrow it's grandma with a broken hip and money in the bank. Once the government says no medical care, even if you could pay, you die and that's just the way the government wants it.

Except that isn't true. And Britain has had some form of NHS since about 1948. Grandma still gets her broken hip fixed, and those with money can seek treatment outside of the system.

Evidently NOT. Because Charlie's parents RAISED the money and would have gotten LOTS of help on Life Flights and things like that. So OBVIOUSLY, even with the MONEY -- the State OWNED that child. That's the outrage. Evidently -- you're immune from obvious and want to defend the indefensible any way that you can..

 

[Coyote]

Because children aren't property.

EVIDENTLY children are property of the STATE in the UK. That's one Clinton "Village" I would FLEE from. Not only were Charlies parents not in the Guardian position with regards to his health care, but STATE APPARENTLY takes the Guardian position in any LEGAL trials.

Is THAT the "Village" -- you leftists want to create here? Good damn luck with that.

Let me ask you the same question I asked others but never really got an answer.

The crux of the debate is "rights" - who has the right to make decisions for a child, the parents, the legal system, the medical community and how far do those rights go?

When it involves a child's life, it's even more heartwrenching because no child should have to die, it's just so wrong.

The US and Britain both have laws that attempt to guarantee that the child's RIGHTS and best interests are considered in complicated ethics cases. I can understand that, though I can agree that it can go too far in some cases and not far enough in others. The US law is much weaker - parents rights are given a great deal more power. Huge exemptions are carved out for "religious rights" and those exemptions can and have lead to de facto abuse. A child isn't property of the state. But neither is it property of the parents. A child has rights and if the parents fail to look after the child's rights - who does? That's when the "Village" becomes necessary.

The question I have is - how far can parents go in seeking to sustain life or advocating an alternative treatment? When does it become child abuse even if unintentional?

 

[Coyote]

There is the implication that GOSH is substandard and knows less than outside specialists is wrong. GOSH is one of the most respected and well-known children's hospital in the world. It's world class and has research facilities for mitochondrial disorders. Like many specialists faced with a patient with a rare and terminal illness - they consult with other specialists and researchers in that field.

Yet it has been the subject of vile attacks over this case that are unwarrented. This article makes some good points and asks hard questions (that don't have right or wrong answers).

Charlie Gard: A case that changed everything? - BBC News
The tarnishing of a famous hospital

Great Ormond Street Hospital (GOSH) is perhaps the most respected and well-known children's hospital in the world. It has been synonymous with excellence ever since it was founded in the 1850s with patients from all over the world now being sent there for pioneering treatment.

And yet in the course of this case it found itself under attack with some staff reporting they had been victims of "vile" abuse and threats (Charlie's parents, Chris Gard and Connie Yates, also reported that they had been the target of abuse on a daily basis.)

One of the problems the hospital faced, particularly as the case developed and the parents received more media attention, was that it simply could not win.

While Charlie's parents gave television and newspaper interviews and made pleas on social media, GOSH was left to rely on media statements and court papers to explain its position. The hospital said it was not possible to give Charlie the non-invasive treatment - a powder that could be added to his food - that his parents felt could help him in his battle with mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage.

Rational, scientific logic was never going to win hearts and minds against the raw emotion of parents trying to do everything they could for the severely ill baby.

Should more have been done by the world of medicine? As the case developed, GOSH started publishing more details about the case and its position.

But Prof Uta Frith, an expert in cognitive development at University College London, wonders if there is a lesson here, arguing science cannot be entirely stripped of its emotional context.

"We can never be 100% certain about our facts and theories. Emotion, which is utterly certain, wins in comparison.

"However, scientific reasoning cannot be completely stripped of emotion. Perhaps this is an asset we need to cultivate more. Reasoned evidence needs champions to engage the hearts of people."

But the case - and its importance - also comes down to a dilemma that becomes more acute as medicine develops. At what point is it appropriate not to treat patients and allow them to die?

These are discussions that go on every day in hospitals - and the overwhelming majority are resolved without major dispute.

Patients coming to the end of life - both the elderly and the young - are now routinely encouraged to discuss advanced care plans setting out how much they want doctors to do when they get closer to death. These plans cover everything from when it is appropriate to resuscitate to when treatment should be withdrawn and a patient moved on to palliative care to help them die with dignity.

Of course in Charlie's case, because he was a baby, this was simply not possible. Instead, he was kept alive on a ventilator while his parents and doctors took to the courts.

The medical profession - bound by the basic tenet of medicine "do no harm" - felt it was in his best interests to let him die with dignity rather than have an experimental treatment that they believed would do him no good. In court they argued he had "no quality of life and no real prospect of any quality of life".

But there is also an ethical dimension to this. Are doctors the right people to determine what constitutes "quality of life"? Do we put too much emphasis on their opinion?​

AND - Parents rights vs the child's - it comes down to a 1989 law designed to protect children. Not socialized medicine - a law designed to prevent child abuse.

The rights of parents

But that brings us on to one of the key arguments put forward by Charlie's parents during the hours of legal discussion - the rights of parents to make decisions for their children.

They believed it should have been up to them to decide what was best for their son. But this is not what the law says.

The 1989 Children's Act, which was introduced following a child abuse scandal in Cleveland, makes it clear that where a child is at risk of harm the state can and should intervene.

Subsequent legislation has followed and a framework has been created whereby the state has been emboldened to challenge the view of parents where they believe children's best interests are not being served.

This sees doctors oppose the decision of parents who are Jehovah's Witnesses and refuse blood transfusions for their children.

The law is also used by councils to take children they believe are at risk into care.

Of course, proving someone is at risk or can be helped by medical treatment is much easier to do than proving a treatment is no longer in the best interests of a child when the parents disagree.

But what was often overlooked in the Charlie Gard case was that it wasn't just the doctors against the parents. Charlie also had an independent guardian who agreed with the hospital.

Daniel Sokol, a medical ethicist and barrister, says the case has shone a light on this issue. "It reminds us that the rights of parents over their children are not absolute. They are limited by what is in the best interests of the child."

But he says it is interesting that in the US, which played such a key role through the intervention of doctors who said they would be prepared to treat Charlie, and because of President Donald Trump's offer of help, the rights of parents to decide what is best are much more enshrined.

"The wishes of parents and 'surrogates' generally carry more weight, which is why many US commentators have expressed surprise at the hospital's handling of this case," he says.

"For them, the doctors should do what the parents want."​

It's a complex ethical situation imo.

Waste of time. NOBODY is attacking the Hospital. Not EVEN the Parents. The problem lies in the callousness and arrogance of a system that BLOCKS and prolongs an effort to attempt alternate treatment against the WILL of the baby's parents.

Oh WOW -- AN INDEPENDENT -- state appointed Guardian AGREEING with the State. Imagine that. Imagine how happy you'd be in the Soviet Union or East Germany..

Yes they are. The hospital and staff have recieved threats, even death threats.

 

[Coyote]

Once the doctor knows the patient will be their patient they will look at the records.

No doctor was called in as a consulting doctor for Charlie Gard so the mention is specious.

There is only one issue and it is not whether any doctor should have reviewed the records.

The sole issue is that these people could pay for medical care and was legally prohibited from receiving that care. That's it.

Today Charlie Gard, tomorrow it's grandma with a broken hip and money in the bank. Once the government says no medical care, even if you could pay, you die and that's just the way the government wants it.

Except that isn't true. And Britain has had some form of NHS since about 1948. Grandma still gets her broken hip fixed, and those with money can seek treatment outside of the system.

Evidently NOT. Because Charlie's parents RAISED the money and would have gotten LOTS of help on Life Flights and things like that. So OBVIOUSLY, even with the MONEY -- the State OWNED that child. That's the outrage. Evidently -- you're immune from obvious and want to defend the indefensible any way that you can..

No, I'm not defending the indefensible.

You're trying to make this something it's not.

Parents do not OWN a child either.

So...who's right in these cases - the parents or "the state" who intervened on the child's behalf?
Judge rules family can't refuse chemo for boy
The sad saga of an Amish girl with a curable cancer whose parents are refusing chemotherapy in favor of “natural healing”
She Had a 'Grapefruit-Sized Tumor' on Her Shoulder. Her Mom Chose Prayer Over the E.R.

 

[Coyote]

There is the implication that GOSH is substandard and knows less than outside specialists is wrong. GOSH is one of the most respected and well-known children's hospital in the world. It's world class and has research facilities for mitochondrial disorders. Like many specialists faced with a patient with a rare and terminal illness - they consult with other specialists and researchers in that field.

Yet it has been the subject of vile attacks over this case that are unwarrented. This article makes some good points and asks hard questions (that don't have right or wrong answers).

Charlie Gard: A case that changed everything? - BBC News
The tarnishing of a famous hospital

Great Ormond Street Hospital (GOSH) is perhaps the most respected and well-known children's hospital in the world. It has been synonymous with excellence ever since it was founded in the 1850s with patients from all over the world now being sent there for pioneering treatment.

And yet in the course of this case it found itself under attack with some staff reporting they had been victims of "vile" abuse and threats (Charlie's parents, Chris Gard and Connie Yates, also reported that they had been the target of abuse on a daily basis.)

One of the problems the hospital faced, particularly as the case developed and the parents received more media attention, was that it simply could not win.

While Charlie's parents gave television and newspaper interviews and made pleas on social media, GOSH was left to rely on media statements and court papers to explain its position. The hospital said it was not possible to give Charlie the non-invasive treatment - a powder that could be added to his food - that his parents felt could help him in his battle with mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage.

Rational, scientific logic was never going to win hearts and minds against the raw emotion of parents trying to do everything they could for the severely ill baby.

Should more have been done by the world of medicine? As the case developed, GOSH started publishing more details about the case and its position.

But Prof Uta Frith, an expert in cognitive development at University College London, wonders if there is a lesson here, arguing science cannot be entirely stripped of its emotional context.

"We can never be 100% certain about our facts and theories. Emotion, which is utterly certain, wins in comparison.

"However, scientific reasoning cannot be completely stripped of emotion. Perhaps this is an asset we need to cultivate more. Reasoned evidence needs champions to engage the hearts of people."

But the case - and its importance - also comes down to a dilemma that becomes more acute as medicine develops. At what point is it appropriate not to treat patients and allow them to die?

These are discussions that go on every day in hospitals - and the overwhelming majority are resolved without major dispute.

Patients coming to the end of life - both the elderly and the young - are now routinely encouraged to discuss advanced care plans setting out how much they want doctors to do when they get closer to death. These plans cover everything from when it is appropriate to resuscitate to when treatment should be withdrawn and a patient moved on to palliative care to help them die with dignity.

Of course in Charlie's case, because he was a baby, this was simply not possible. Instead, he was kept alive on a ventilator while his parents and doctors took to the courts.

The medical profession - bound by the basic tenet of medicine "do no harm" - felt it was in his best interests to let him die with dignity rather than have an experimental treatment that they believed would do him no good. In court they argued he had "no quality of life and no real prospect of any quality of life".

But there is also an ethical dimension to this. Are doctors the right people to determine what constitutes "quality of life"? Do we put too much emphasis on their opinion?​

AND - Parents rights vs the child's - it comes down to a 1989 law designed to protect children. Not socialized medicine - a law designed to prevent child abuse.

The rights of parents

But that brings us on to one of the key arguments put forward by Charlie's parents during the hours of legal discussion - the rights of parents to make decisions for their children.

They believed it should have been up to them to decide what was best for their son. But this is not what the law says.

The 1989 Children's Act, which was introduced following a child abuse scandal in Cleveland, makes it clear that where a child is at risk of harm the state can and should intervene.

Subsequent legislation has followed and a framework has been created whereby the state has been emboldened to challenge the view of parents where they believe children's best interests are not being served.

This sees doctors oppose the decision of parents who are Jehovah's Witnesses and refuse blood transfusions for their children.

The law is also used by councils to take children they believe are at risk into care.

Of course, proving someone is at risk or can be helped by medical treatment is much easier to do than proving a treatment is no longer in the best interests of a child when the parents disagree.

But what was often overlooked in the Charlie Gard case was that it wasn't just the doctors against the parents. Charlie also had an independent guardian who agreed with the hospital.

Daniel Sokol, a medical ethicist and barrister, says the case has shone a light on this issue. "It reminds us that the rights of parents over their children are not absolute. They are limited by what is in the best interests of the child."

But he says it is interesting that in the US, which played such a key role through the intervention of doctors who said they would be prepared to treat Charlie, and because of President Donald Trump's offer of help, the rights of parents to decide what is best are much more enshrined.

"The wishes of parents and 'surrogates' generally carry more weight, which is why many US commentators have expressed surprise at the hospital's handling of this case," he says.

"For them, the doctors should do what the parents want."​

It's a complex ethical situation imo.

Waste of time. NOBODY is attacking the Hospital. Not EVEN the Parents. The problem lies in the callousness and arrogance of a system that BLOCKS and prolongs an effort to attempt alternate treatment against the WILL of the baby's parents.

Oh WOW -- AN INDEPENDENT -- state appointed Guardian AGREEING with the State. Imagine that. Imagine how happy you'd be in the Soviet Union or East Germany..

So parents can do anything they want with a child, is that it?

 

[PredFan]

That's possibly the stupidest statement I've heard in a long time.

you "HEARD" it? how long has this messageboard been TALKING TO YOU?

Trying to one-up your stupid statement with a childish statement? Interesting strategy but it fell short I'm afraid.

actually there was nothing stupid about my statement-----it is something I learned from my older brother--LONG AGO-----he is a Professor of astrophysics-----much acclaimed and, in fact, a recipient of the president's Freedom award for his contributions to the field of Astrophysics and NASA------and you?

Well, either you are a liar, or your brother is an idiot. Statistics is part of science but it isn't all of science. That's just stupid. I don't need to be a rocket scientist to know that fact.

actually----you are wrong and he is right. -----statistical analysis rules every branch of science-----and CERTAINLY ASTROPHYSICS------and psychiatrists are stuck with it----not easy for them

Wrong.

I imagine it plays a larger part in some sciences than it does in others, but it doesn't play a large part in medicine, which is what we are talking about. Oh sure, there are statistics but that isn't medicine. We treat patients as individuals. That's why we are better than socialized medicine.

 

[irosie91]

you "HEARD" it? how long has this messageboard been TALKING TO YOU?

Trying to one-up your stupid statement with a childish statement? Interesting strategy but it fell short I'm afraid.

actually there was nothing stupid about my statement-----it is something I learned from my older brother--LONG AGO-----he is a Professor of astrophysics-----much acclaimed and, in fact, a recipient of the president's Freedom award for his contributions to the field of Astrophysics and NASA------and you?

Well, either you are a liar, or your brother is an idiot. Statistics is part of science but it isn't all of science. That's just stupid. I don't need to be a rocket scientist to know that fact.

actually----you are wrong and he is right. -----statistical analysis rules every branch of science-----and CERTAINLY ASTROPHYSICS------and psychiatrists are stuck with it----not easy for them

Wrong.

I imagine it plays a larger part in some sciences than it does in others, but it doesn't play a large part in medicine, which is what we are talking about. Oh sure, there are statistics but that isn't medicine. We treat patients as individuals. That's why we are better than socialized medicine.

sheeeeehs------stats are not important in medicine-? how do you IMAGINE "normal" Na levels
are determined?---------every time you check a slip from the lab--------you are looking at a STAT

 

[flacaltenn]

Because children aren't property.

EVIDENTLY children are property of the STATE in the UK. That's one Clinton "Village" I would FLEE from. Not only were Charlies parents not in the Guardian position with regards to his health care, but STATE APPARENTLY takes the Guardian position in any LEGAL trials.

Is THAT the "Village" -- you leftists want to create here? Good damn luck with that.

Let me ask you the same question I asked others but never really got an answer.

The crux of the debate is "rights" - who has the right to make decisions for a child, the parents, the legal system, the medical community and how far do those rights go?

When it involves a child's life, it's even more heartwrenching because no child should have to die, it's just so wrong.

The US and Britain both have laws that attempt to guarantee that the child's RIGHTS and best interests are considered in complicated ethics cases. I can understand that, though I can agree that it can go too far in some cases and not far enough in others. The US law is much weaker - parents rights are given a great deal more power. Huge exemptions are carved out for "religious rights" and those exemptions can and have lead to de facto abuse. A child isn't property of the state. But neither is it property of the parents. A child has rights and if the parents fail to look after the child's rights - who does? That's when the "Village" becomes necessary.

The question I have is - how far can parents go in seeking to sustain life or advocating an alternative treatment? When does it become child abuse even if unintentional?

There is simply no comparison of the Parents rights to Guardianship between the USA and UK and I want to KEEP it that way. You touted the State appointed LEGAL Guardian for Charlie as agreeing with the State. Is that REALLY an endorsement of "fairness"? I also told you this shill was the EXECUTIVE DIRECTOR of the Boards of the 2 largest EUTHANASIA orgs in the UK.. Is that a minor --- or a MAJOR --- conflict of interest?

The US law is much weaker - parents rights are given a great deal more power. Huge exemptions are carved out for "religious rights" and those exemptions can and have lead to de facto abuse. A child isn't property of the state.

US laws are WEAKER? That's an admission that you DESIRE less Liberty and Freedom and worship the wisdom and compassion of an ALL POWERFUL State Govt. I can't believe you would think that parents having guardianship of their children is a WEAKER position. Unless you think individuals are cruel incapable morons. If there's abuse -- you PROSECUTE IT -- you do not turn ownership of your children to the State for Medical/Legal decisions.

And in this case -- as regards Medical/Legal decisions -- Charlie was EXACTLY "property of the State".

It appears that the UK has gone SO FAR into Maoist direction over peoples choices, freedoms and liberties, that ANY CHILD is represented by a State Guardian in ANY legal proceedings over there. HOPEFULLY, that will change.

I know people who own cats and dogs that would FURIOUS and ANGRY if the State assumed the Guardian position of them. But maybe --- children are another story..

 

[flacaltenn]

There is the implication that GOSH is substandard and knows less than outside specialists is wrong. GOSH is one of the most respected and well-known children's hospital in the world. It's world class and has research facilities for mitochondrial disorders. Like many specialists faced with a patient with a rare and terminal illness - they consult with other specialists and researchers in that field.

Yet it has been the subject of vile attacks over this case that are unwarrented. This article makes some good points and asks hard questions (that don't have right or wrong answers).

Charlie Gard: A case that changed everything? - BBC News
The tarnishing of a famous hospital

Great Ormond Street Hospital (GOSH) is perhaps the most respected and well-known children's hospital in the world. It has been synonymous with excellence ever since it was founded in the 1850s with patients from all over the world now being sent there for pioneering treatment.

And yet in the course of this case it found itself under attack with some staff reporting they had been victims of "vile" abuse and threats (Charlie's parents, Chris Gard and Connie Yates, also reported that they had been the target of abuse on a daily basis.)

One of the problems the hospital faced, particularly as the case developed and the parents received more media attention, was that it simply could not win.

While Charlie's parents gave television and newspaper interviews and made pleas on social media, GOSH was left to rely on media statements and court papers to explain its position. The hospital said it was not possible to give Charlie the non-invasive treatment - a powder that could be added to his food - that his parents felt could help him in his battle with mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage.

Rational, scientific logic was never going to win hearts and minds against the raw emotion of parents trying to do everything they could for the severely ill baby.

Should more have been done by the world of medicine? As the case developed, GOSH started publishing more details about the case and its position.

But Prof Uta Frith, an expert in cognitive development at University College London, wonders if there is a lesson here, arguing science cannot be entirely stripped of its emotional context.

"We can never be 100% certain about our facts and theories. Emotion, which is utterly certain, wins in comparison.

"However, scientific reasoning cannot be completely stripped of emotion. Perhaps this is an asset we need to cultivate more. Reasoned evidence needs champions to engage the hearts of people."

But the case - and its importance - also comes down to a dilemma that becomes more acute as medicine develops. At what point is it appropriate not to treat patients and allow them to die?

These are discussions that go on every day in hospitals - and the overwhelming majority are resolved without major dispute.

Patients coming to the end of life - both the elderly and the young - are now routinely encouraged to discuss advanced care plans setting out how much they want doctors to do when they get closer to death. These plans cover everything from when it is appropriate to resuscitate to when treatment should be withdrawn and a patient moved on to palliative care to help them die with dignity.

Of course in Charlie's case, because he was a baby, this was simply not possible. Instead, he was kept alive on a ventilator while his parents and doctors took to the courts.

The medical profession - bound by the basic tenet of medicine "do no harm" - felt it was in his best interests to let him die with dignity rather than have an experimental treatment that they believed would do him no good. In court they argued he had "no quality of life and no real prospect of any quality of life".

But there is also an ethical dimension to this. Are doctors the right people to determine what constitutes "quality of life"? Do we put too much emphasis on their opinion?​

AND - Parents rights vs the child's - it comes down to a 1989 law designed to protect children. Not socialized medicine - a law designed to prevent child abuse.

The rights of parents

But that brings us on to one of the key arguments put forward by Charlie's parents during the hours of legal discussion - the rights of parents to make decisions for their children.

They believed it should have been up to them to decide what was best for their son. But this is not what the law says.

The 1989 Children's Act, which was introduced following a child abuse scandal in Cleveland, makes it clear that where a child is at risk of harm the state can and should intervene.

Subsequent legislation has followed and a framework has been created whereby the state has been emboldened to challenge the view of parents where they believe children's best interests are not being served.

This sees doctors oppose the decision of parents who are Jehovah's Witnesses and refuse blood transfusions for their children.

The law is also used by councils to take children they believe are at risk into care.

Of course, proving someone is at risk or can be helped by medical treatment is much easier to do than proving a treatment is no longer in the best interests of a child when the parents disagree.

But what was often overlooked in the Charlie Gard case was that it wasn't just the doctors against the parents. Charlie also had an independent guardian who agreed with the hospital.

Daniel Sokol, a medical ethicist and barrister, says the case has shone a light on this issue. "It reminds us that the rights of parents over their children are not absolute. They are limited by what is in the best interests of the child."

But he says it is interesting that in the US, which played such a key role through the intervention of doctors who said they would be prepared to treat Charlie, and because of President Donald Trump's offer of help, the rights of parents to decide what is best are much more enshrined.

"The wishes of parents and 'surrogates' generally carry more weight, which is why many US commentators have expressed surprise at the hospital's handling of this case," he says.

"For them, the doctors should do what the parents want."​

It's a complex ethical situation imo.

Waste of time. NOBODY is attacking the Hospital. Not EVEN the Parents. The problem lies in the callousness and arrogance of a system that BLOCKS and prolongs an effort to attempt alternate treatment against the WILL of the baby's parents.

Oh WOW -- AN INDEPENDENT -- state appointed Guardian AGREEING with the State. Imagine that. Imagine how happy you'd be in the Soviet Union or East Germany..

So parents can do anything they want with a child, is that it?

No... They can't .. They WILL be prosecuted for abuse. That's how that should work. You don't ASSUME that every parent is incompetent and strip ALL their collective Guardianship rights. Only the arrogance of "we know best and you are untrustworthy" leftist thinking would punish EVERY parent for the abuses of some.

 

[Coyote]

......

Because children aren't property.

EVIDENTLY children are property of the STATE in the UK. That's one Clinton "Village" I would FLEE from. Not only were Charlies parents not in the Guardian position with regards to his health care, but STATE APPARENTLY takes the Guardian position in any LEGAL trials.

Is THAT the "Village" -- you leftists want to create here? Good damn luck with that.

Let me ask you the same question I asked others but never really got an answer.

The crux of the debate is "rights" - who has the right to make decisions for a child, the parents, the legal system, the medical community and how far do those rights go?

When it involves a child's life, it's even more heartwrenching because no child should have to die, it's just so wrong.

The US and Britain both have laws that attempt to guarantee that the child's RIGHTS and best interests are considered in complicated ethics cases. I can understand that, though I can agree that it can go too far in some cases and not far enough in others. The US law is much weaker - parents rights are given a great deal more power. Huge exemptions are carved out for "religious rights" and those exemptions can and have lead to de facto abuse. A child isn't property of the state. But neither is it property of the parents. A child has rights and if the parents fail to look after the child's rights - who does? That's when the "Village" becomes necessary.

The question I have is - how far can parents go in seeking to sustain life or advocating an alternative treatment? When does it become child abuse even if unintentional?

There is simply no comparison of the Parents rights to Guardianship between the USA and UK and I want to KEEP it that way. You touted the State appointed LEGAL Guardian for Charlie as agreeing with the State. Is that REALLY an endorsement of "fairness"? I also told you this shill was the EXECUTIVE DIRECTOR of the Boards of the 2 largest EUTHANASIA orgs in the UK.. Is that a minor --- or a MAJOR --- conflict of interest?

IS it a conflict of interest? Because that implies that someone can't possibly advocate for life because he also supports a person being allowed to die. It's also a conflict of interest for someone with a financial interest in an experimental therapy to advocate it...isn't it?

You're the one making it about the state. It isn't really. It's about representing the child's interests vs. the parents interests. NO ONE WANTS A CHILD TO DIE - you do understand that don't you? You may disagree with it, or agree with it - but that is what it boils down to.

The US law is much weaker - parents rights are given a great deal more power. Huge exemptions are carved out for "religious rights" and those exemptions can and have lead to de facto abuse. A child isn't property of the state.

US laws are WEAKER? That's an admission that you DESIRE less Liberty and Freedom and worship the wisdom and compassion of an ALL POWERFUL State Govt. I can't believe you would think that parents having guardianship of their children is a WEAKER position. Unless you think individuals are cruel incapable morons. If there's abuse -- you PROSECUTE IT -- you do not turn ownership of your children to the State for Medical/Legal decisions.

Before you yell at me about "weaker laws' - answer my question. Look at those articles I linked to. How far can parent's rights go before it becomes indefensible child abuse? That's what these laws pertain to. They may go to far - I'll agree with you on that - but in some cases they clearly do not go far enough.

Children are not property and someone has to look out for their best interests. Sometimes parents fail. And sometimes government overreaches.

And in this case -- as regards Medical/Legal decisions -- Charlie was EXACTLY "property of the State".

It appears that the UK has gone SO FAR into Maoist direction over peoples choices, freedoms and liberties, that ANY CHILD is represented by a State Guardian in ANY legal proceedings over there. HOPEFULLY, that will change.

I know people who own cats and dogs that would FURIOUS and ANGRY if the State assumed the Guardian position of them. But maybe --- children are another story..

We have animal welfare laws and animal abuse laws and animals can and are confiscated for neglect or abuse.

 

[Coyote]

There is the implication that GOSH is substandard and knows less than outside specialists is wrong. GOSH is one of the most respected and well-known children's hospital in the world. It's world class and has research facilities for mitochondrial disorders. Like many specialists faced with a patient with a rare and terminal illness - they consult with other specialists and researchers in that field.

Yet it has been the subject of vile attacks over this case that are unwarrented. This article makes some good points and asks hard questions (that don't have right or wrong answers).

Charlie Gard: A case that changed everything? - BBC News
The tarnishing of a famous hospital

Great Ormond Street Hospital (GOSH) is perhaps the most respected and well-known children's hospital in the world. It has been synonymous with excellence ever since it was founded in the 1850s with patients from all over the world now being sent there for pioneering treatment.

And yet in the course of this case it found itself under attack with some staff reporting they had been victims of "vile" abuse and threats (Charlie's parents, Chris Gard and Connie Yates, also reported that they had been the target of abuse on a daily basis.)

One of the problems the hospital faced, particularly as the case developed and the parents received more media attention, was that it simply could not win.

While Charlie's parents gave television and newspaper interviews and made pleas on social media, GOSH was left to rely on media statements and court papers to explain its position. The hospital said it was not possible to give Charlie the non-invasive treatment - a powder that could be added to his food - that his parents felt could help him in his battle with mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage.

Rational, scientific logic was never going to win hearts and minds against the raw emotion of parents trying to do everything they could for the severely ill baby.

Should more have been done by the world of medicine? As the case developed, GOSH started publishing more details about the case and its position.

But Prof Uta Frith, an expert in cognitive development at University College London, wonders if there is a lesson here, arguing science cannot be entirely stripped of its emotional context.

"We can never be 100% certain about our facts and theories. Emotion, which is utterly certain, wins in comparison.

"However, scientific reasoning cannot be completely stripped of emotion. Perhaps this is an asset we need to cultivate more. Reasoned evidence needs champions to engage the hearts of people."

But the case - and its importance - also comes down to a dilemma that becomes more acute as medicine develops. At what point is it appropriate not to treat patients and allow them to die?

These are discussions that go on every day in hospitals - and the overwhelming majority are resolved without major dispute.

Patients coming to the end of life - both the elderly and the young - are now routinely encouraged to discuss advanced care plans setting out how much they want doctors to do when they get closer to death. These plans cover everything from when it is appropriate to resuscitate to when treatment should be withdrawn and a patient moved on to palliative care to help them die with dignity.

Of course in Charlie's case, because he was a baby, this was simply not possible. Instead, he was kept alive on a ventilator while his parents and doctors took to the courts.

The medical profession - bound by the basic tenet of medicine "do no harm" - felt it was in his best interests to let him die with dignity rather than have an experimental treatment that they believed would do him no good. In court they argued he had "no quality of life and no real prospect of any quality of life".

But there is also an ethical dimension to this. Are doctors the right people to determine what constitutes "quality of life"? Do we put too much emphasis on their opinion?​

AND - Parents rights vs the child's - it comes down to a 1989 law designed to protect children. Not socialized medicine - a law designed to prevent child abuse.

The rights of parents

But that brings us on to one of the key arguments put forward by Charlie's parents during the hours of legal discussion - the rights of parents to make decisions for their children.

They believed it should have been up to them to decide what was best for their son. But this is not what the law says.

The 1989 Children's Act, which was introduced following a child abuse scandal in Cleveland, makes it clear that where a child is at risk of harm the state can and should intervene.

Subsequent legislation has followed and a framework has been created whereby the state has been emboldened to challenge the view of parents where they believe children's best interests are not being served.

This sees doctors oppose the decision of parents who are Jehovah's Witnesses and refuse blood transfusions for their children.

The law is also used by councils to take children they believe are at risk into care.

Of course, proving someone is at risk or can be helped by medical treatment is much easier to do than proving a treatment is no longer in the best interests of a child when the parents disagree.

But what was often overlooked in the Charlie Gard case was that it wasn't just the doctors against the parents. Charlie also had an independent guardian who agreed with the hospital.

Daniel Sokol, a medical ethicist and barrister, says the case has shone a light on this issue. "It reminds us that the rights of parents over their children are not absolute. They are limited by what is in the best interests of the child."

But he says it is interesting that in the US, which played such a key role through the intervention of doctors who said they would be prepared to treat Charlie, and because of President Donald Trump's offer of help, the rights of parents to decide what is best are much more enshrined.

"The wishes of parents and 'surrogates' generally carry more weight, which is why many US commentators have expressed surprise at the hospital's handling of this case," he says.

"For them, the doctors should do what the parents want."​

It's a complex ethical situation imo.

Waste of time. NOBODY is attacking the Hospital. Not EVEN the Parents. The problem lies in the callousness and arrogance of a system that BLOCKS and prolongs an effort to attempt alternate treatment against the WILL of the baby's parents.

Oh WOW -- AN INDEPENDENT -- state appointed Guardian AGREEING with the State. Imagine that. Imagine how happy you'd be in the Soviet Union or East Germany..

So parents can do anything they want with a child, is that it?

No... They can't .. They WILL be prosecuted for abuse. That's how that should work. You don't ASSUME that every parent is incompetent and strip ALL their collective Guardianship rights. Only the arrogance of "we know best and you are untrustworthy" leftist thinking would punish EVERY parent for the abuses of some.

I don't think those laws assume every parent is incompetent. From what I've read it only goes into affect when there are extreme differences between the medical ethics and the parents desires.

Look. You're making the same generalizations here that you are accusing me of. It's not EVERY parent. It's SOME.

 

[flacaltenn]

There is the implication that GOSH is substandard and knows less than outside specialists is wrong. GOSH is one of the most respected and well-known children's hospital in the world. It's world class and has research facilities for mitochondrial disorders. Like many specialists faced with a patient with a rare and terminal illness - they consult with other specialists and researchers in that field.

Yet it has been the subject of vile attacks over this case that are unwarrented. This article makes some good points and asks hard questions (that don't have right or wrong answers).

Charlie Gard: A case that changed everything? - BBC News
The tarnishing of a famous hospital

Great Ormond Street Hospital (GOSH) is perhaps the most respected and well-known children's hospital in the world. It has been synonymous with excellence ever since it was founded in the 1850s with patients from all over the world now being sent there for pioneering treatment.

And yet in the course of this case it found itself under attack with some staff reporting they had been victims of "vile" abuse and threats (Charlie's parents, Chris Gard and Connie Yates, also reported that they had been the target of abuse on a daily basis.)

One of the problems the hospital faced, particularly as the case developed and the parents received more media attention, was that it simply could not win.

While Charlie's parents gave television and newspaper interviews and made pleas on social media, GOSH was left to rely on media statements and court papers to explain its position. The hospital said it was not possible to give Charlie the non-invasive treatment - a powder that could be added to his food - that his parents felt could help him in his battle with mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage.

Rational, scientific logic was never going to win hearts and minds against the raw emotion of parents trying to do everything they could for the severely ill baby.

Should more have been done by the world of medicine? As the case developed, GOSH started publishing more details about the case and its position.

But Prof Uta Frith, an expert in cognitive development at University College London, wonders if there is a lesson here, arguing science cannot be entirely stripped of its emotional context.

"We can never be 100% certain about our facts and theories. Emotion, which is utterly certain, wins in comparison.

"However, scientific reasoning cannot be completely stripped of emotion. Perhaps this is an asset we need to cultivate more. Reasoned evidence needs champions to engage the hearts of people."

But the case - and its importance - also comes down to a dilemma that becomes more acute as medicine develops. At what point is it appropriate not to treat patients and allow them to die?

These are discussions that go on every day in hospitals - and the overwhelming majority are resolved without major dispute.

Patients coming to the end of life - both the elderly and the young - are now routinely encouraged to discuss advanced care plans setting out how much they want doctors to do when they get closer to death. These plans cover everything from when it is appropriate to resuscitate to when treatment should be withdrawn and a patient moved on to palliative care to help them die with dignity.

Of course in Charlie's case, because he was a baby, this was simply not possible. Instead, he was kept alive on a ventilator while his parents and doctors took to the courts.

The medical profession - bound by the basic tenet of medicine "do no harm" - felt it was in his best interests to let him die with dignity rather than have an experimental treatment that they believed would do him no good. In court they argued he had "no quality of life and no real prospect of any quality of life".

But there is also an ethical dimension to this. Are doctors the right people to determine what constitutes "quality of life"? Do we put too much emphasis on their opinion?​

AND - Parents rights vs the child's - it comes down to a 1989 law designed to protect children. Not socialized medicine - a law designed to prevent child abuse.

The rights of parents

But that brings us on to one of the key arguments put forward by Charlie's parents during the hours of legal discussion - the rights of parents to make decisions for their children.

They believed it should have been up to them to decide what was best for their son. But this is not what the law says.

The 1989 Children's Act, which was introduced following a child abuse scandal in Cleveland, makes it clear that where a child is at risk of harm the state can and should intervene.

Subsequent legislation has followed and a framework has been created whereby the state has been emboldened to challenge the view of parents where they believe children's best interests are not being served.

This sees doctors oppose the decision of parents who are Jehovah's Witnesses and refuse blood transfusions for their children.

The law is also used by councils to take children they believe are at risk into care.

Of course, proving someone is at risk or can be helped by medical treatment is much easier to do than proving a treatment is no longer in the best interests of a child when the parents disagree.

But what was often overlooked in the Charlie Gard case was that it wasn't just the doctors against the parents. Charlie also had an independent guardian who agreed with the hospital.

Daniel Sokol, a medical ethicist and barrister, says the case has shone a light on this issue. "It reminds us that the rights of parents over their children are not absolute. They are limited by what is in the best interests of the child."

But he says it is interesting that in the US, which played such a key role through the intervention of doctors who said they would be prepared to treat Charlie, and because of President Donald Trump's offer of help, the rights of parents to decide what is best are much more enshrined.

"The wishes of parents and 'surrogates' generally carry more weight, which is why many US commentators have expressed surprise at the hospital's handling of this case," he says.

"For them, the doctors should do what the parents want."​

It's a complex ethical situation imo.

Waste of time. NOBODY is attacking the Hospital. Not EVEN the Parents. The problem lies in the callousness and arrogance of a system that BLOCKS and prolongs an effort to attempt alternate treatment against the WILL of the baby's parents.

Oh WOW -- AN INDEPENDENT -- state appointed Guardian AGREEING with the State. Imagine that. Imagine how happy you'd be in the Soviet Union or East Germany..

So parents can do anything they want with a child, is that it?

No... They can't .. They WILL be prosecuted for abuse. That's how that should work. You don't ASSUME that every parent is incompetent and strip ALL their collective Guardianship rights. Only the arrogance of "we know best and you are untrustworthy" leftist thinking would punish EVERY parent for the abuses of some.

Coyote -- I have seen lists of proposed "child abuse" guidelines from Leftist policy folks and orgs that include

1) Feeding them a PopTart for breakfast. OR
2) Sending them to Sunday School

I do NOT trust those leftists to make Guardianship decisions on my parenting. And I will not give them the MASSIVE Political power to fuck with every hare-brained decision on LAW regarding child rearing.

Nevermind denying me the RIGHT to take my child into a mainstream cutting edge Clinical Trial that COULD save what OTHERS CLAIM to be a terminally ill child. ESPECIALLY when they wanted to KILL that child 6 months before he died.

WHY the FUck do we have Hospice Care? We could save 10 to 20% of end of life care costs by just going around pulling plugs out of the wall. These jerks would not even ALLOW Charlie to go back HOME for Hospice care. Just Fuck it all. That's not gonna happen in America...

 

[flacaltenn]

You're the one making it about the state. It isn't really. It's about representing the child's interests vs. the parents interests. NO ONE WANTS A CHILD TO DIE - you do understand that don't you? You may disagree with it, or agree with it - but that is what it boils down to.

You're barrelling right ahead here -- ain't ya? The NHS WANTED CHARLIE to die in April... The PARENTS had asked in JANUARY to just put their child in a clinical trial that COULD save his life back then..

Don't tell me --- NOBODY WANTS A CHILD TO DIE.. That's EXACTLY what this is all about..