Charlie Gard Has Passed

@centrox,

From a legal and ethical perspective, young children don't have their own will.
Therefore, others must decide in their interest. If a child is seriously ill, it is best for the doctors and parents to work together.

If, however, they can not agree, someone else has to do it - and how that is done is regulated by laws in the various countries.
In Germany, if parents' and doctors' opinion differs, a "coordinator for child protection" tries to mediate.If that doesn't give a result, the "youth office" makes a decision. That can be appealed at the administrative court ...

But usually, it's just a debate between doctors and parents - the coordination is mainly used when religious beliefs are affected.

2 Replies

@Walter Hinteler,

Walter Hinteler wrote:

From a legal and ethical perspective, young children don't have their own will.

In the Charlie Gard case, the infant was joined as a party to the litigation by the judge, and his (purely his) interests were represented by a court-appointed guardian, represented by independent counsel.

1 Reply

@centrox,

I know. (We've got a really different legal system to the one in the UK here in Germany.)

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@Walter Hinteler,

But the ultimate decision was made by the courts.

If you want to bring NHS into the discussion, be my guest, but my intentions for this thread was to discuss the power of the State (however it manifests itself) to usurp from citizens the life and death decisions concerning their child. If this happened in the US, there would be no NHS involvement, but the same question would be posed.

Not that you have raised this, but it would be helpful if we could use the Gard case as a near perfect example, and not wander off into cases where the facts are much different.

To my knowledge, no one ever doubted the motivation of the parents, or connected them to some strange cult or irrational credo. They have been incorrect to believe that the US procedure held any hope for their son, but their belief was not irrational. This was not a case of parents wanting to move their child somewhere so that an illegal and arcane ritual could be deployed in an effort to save him.

There were medical experts in the US who didn't agree with the British experts that the treatment offered no hope. This doesn't mean that the British doctors were wrong because US doctors are always right. It simply means that the parents had a rational reason for hoping the treatment might save their son. If they had been allowed to make the attempt early on we would have had the opportunity to see if the treatment worked.

I've no problem with the State stepping in to preserve the life of a child whose parents are abusive or irrationally withholding necessary medical treatment, but that isn't what happened here.

1 Reply

@maxdancona,

maxdancona wrote:

Quote:
Of course it is up to the parents. Unless a parent is abusing their child, there is no reason for the government to be involved. As far as the child being in pain and distress - one - there is pain killers; two - how often do human beings go through pain even when there is no hope of recovery and we keep them alive? In the case where a person (whether it child or adult) cannot decide for themselves - a proxy is put in place in this case the parent.

How do you feel about Seventh Day Adventist parents who don't want their kids to have blood transfusions? Or parents who don't want their kids to be immunized? Are you really saying there is "no reason for the government to be involved" in medical decisions?

If you are consistent on this, than you are taking a respectable stance. But I don't think that saying that the government has no role in being involved in medical decisions is as simple a stance as you are pretending. Western governments regulate quite a bit based on medical ethics; there are laws on abortion, and human cloning, and organ donation... all of these things are regulated even if a parent wants them to give hope to their child.

I agree with Finn, the issue is whether the State has the right to make life or death medical decisions against the will of the parents. However, I believe that in cases like vaccinations, and blood transfusions, and ethically questionable procedures, that the State does have that right.

Linkat can, of course, answer for herself, but I suspect that her comment Unless a parent is abusing their child largely addressed your point.

Irrationally withholding treatment that will save a child's life, while not meeting the conventional definition, can be considered "abuse."

Refusing to immunize a child is less clearly so, but it also involves broader public health issues. If you don't immunize your child you are not only putting the child at risk of serious and potentially life threatening diseases, you are increasing the community's risk from them.

The Charlie Gard case is unique but not singlular. It could happen to a great many other parents.

1 Reply

@Finn dAbuzz,

In this context it might be interesting to read the decision

http://hudoc.echr.coe.int/eng#{"itemid":["001-175359"]}

of the ECHR. (You have to copy the complete link above, sorry.)
It sums up all previous arguments at the UK courts as well as the relevant laws.

2 Replies

@Walter Hinteler,

Walter Hinteler wrote:

From a legal and ethical perspective, young children don't have their own will.
Therefore, others must decide in their interest. If a child is seriously ill, it is best for the doctors and parents to work together.

If, however, they can not agree, someone else has to do it - and how that is done is regulated by laws in the various countries.
In Germany, if parents' and doctors' opinion differs, a "coordinator for child protection" tries to mediate.If that doesn't give a result, the "youth office" makes a decision. That can be appealed at the administrative court ...

But usually, it's just a debate between doctors and parents - the coordination is mainly used when religious beliefs are affected.

Absolutely.

Whether some nations resolve this dilemma one way and others resolve it another should not, however, influence someone's answer to my question unless underlying their consideration is a belief that the State is always right.

Personally, I believe the Gards should have been permitted to move their son to the US for treatment. They were not irrational in their hope, as minimal as it might have been, and to allow them to do so would not have significantly increased or prolonged the child's suffering. I appreciate there was a issue of legal precedent involved, but if the UK doctors were truly only concerned about Charlie Gard they would have taken into consideration that the legal battles would prolong his condition much more than attempting the treatment would have. Again, I understand that an important precedent was involved, but any consideration of that factor can't be deemed a consideration of Charlie Gard's condition and life.

The parents had no point to make or prove other than they wanted to take whatever options there were to save the life of their child.

Unless the State has a solid reason to question the intent of the parents, their love and best intentions for their child should be given priority over the opinion of doctors or the State.

That this isn't the case in the UK is simply the way in which that country has decided to go. Nothing I believe will change that and I'm certainly not trying to form a movement that will. If the majority of the citizens of the UK are comfortable with this approach, than it is likely to remain in place and that is not a heinous situation or any reason to harshly criticize those British citizens, but it doesn't mean other people can't have a different opinion and voice it.

Somewhere along the line I think a couple of people participating in this thread got the wildly erroneous idea that I was suggesting that somehow the US government should have attempted to get involved and force the UK to allow Charlie to come to America. How they came to this notion is totally beyond me but it couldn't be farther from the truth.

I mentioned that Trump and the Pope has weighed in,in my summary of the matter and only as an indication of how the case had received global attention. In truth, all that Trump's tweet on the matter said was that the US would be very happy to help the Gards. There was no mention of what he thought about the UK courts' decision and certainly no criticism of same.

1 Reply

@centrox,

centrox wrote:

Ultimately, it wasn’t Ryan’s government bureaucrats, but rather Charlie’s health-care providers who decided that his condition was beyond treatment. (British courts agreed with them.)

The facts have never fitted the extreme right's ideology. Remember, the motivation behind this thread, exploiting a child's death to make a tawdry political point is about par for the course.

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@Finn dAbuzz,

Quote:

The Charlie Gard case is unique but not singlular. It could happen to a great many other parents.

Let's get this straight. The parents of Charlie Gard were acting irrationally according to the medical experts (their actions are emotionally understandable, but that doesn't make them rational). This story is about medical ethics. The parents were judged to not be acting in the best interest of their child. This was a judgement that was made by doctors and medical experts (not by the government).

Kids die all the time. It sad, but there are many cases where parents lose their children. This is not the fault of government.

The question is about medical ethics. If the doctors believe that it is unethical to pursue a course of treatment for a child, can the parents override them. The doctors believed that these parents were clinging to a false hope, and that their wishes would cause further damage.

The doctors in this story did have the child's best interest at heart. The court (and the state) was simply the way society works out these emotionally difficult decisions.

I don't think this story fits the "government overreach" narrative. This is the story of the medical ethics surrounding a critically ill child.

3 Replies

@Finn dAbuzz,

I think that it always difficult for someone used to a certain legal system and legal procedure that it may work elsewhere differently.

In the USA, clinicians cannot withdraw life support without the consent of a decision-maker. Such decisions in England have largely been left to courts to decide.
Under the Children Act of 1989, patients in Charlie’s situation can be assigned their own independent legal representative to ensure that their interests are met, rather than the interests of their families.
Charlie’s guardian agreed that life support should be withdrawn, generating a complex legal case involving the hospital, Charlie’s appointed legal guardian, and his parents. (See the EHCR's decision linked above.)

2 Replies

@Walter Hinteler,

Ten cases like Charlie Gard’s heard in English courts this year

Quote:

English courts have considered 10 cases involving the disputed medical treatment of children so far this year, the Observer has learned.

The news comes as concern grows over the manner in which such cases are dealt with in the wake of the traumatic final days of Charlie Gard, the 11-month-old boy who died on Friday following a protracted legal battle.

Last year approximately 18 such cases were considered by judges sitting in England. The figures, confirmed to the Observer by Cafcass, the independent body that represents children in family court cases, highlight the fact that most cases involving disputed medical treatment are dealt with out of the public eye with a guardian appointed to represent the child’s best interests, independent of what the parents may want.

In a statement, Cafcass explained: “It is only where there is an approach to the court for a decision that Cafcass become involved, as the child is almost always joined as a party to the court proceedings.

“As soon as the child is joined as a party, Cafcass is asked to provide a children’s guardian who will represent the interests of the child and is independent of the parents and the hospital.

“The guardian will try to be as sympathetic as possible to the parents in their handling of the case, but only represent the interests of the child.”

Charlie Gard died after being moved to a hospice following a high court ruling. He suffered from an extremely rare genetic condition causing progressive brain damage and muscle weakness.

Unusually, Charlie’s parents, Connie Yates and Chris Gard, sought attention for their son’s case, which was then taken up by a grassroots network of supporters calling themselves “Charlie’s Army” and high-profile figures including Donald Trump,Nigel Farage and Pope Francis.

“So-called pro-life preachers, anti-abortion people, populist figures such as Nigel Farage were waiting to get a hold on to this,” said Dr Ranjana Das, senior lecturer in the department of sociology at the University of Surrey. “There are lots of people who are disaffected, who are feeling they need a cause to hold on to. It’s a complex matter as to why people get so emotionally involved, because it comes from a place of general anguish, and people get really emotionally involved in it – like it’s a soap opera narrative.”

Alison Smith-Squire, a journalist and spokeswoman for Charlie’s parents, defended their decision to go for publicity. “With media coverage it would mean the story and ethics around it – surely in the public interest – would be in the public domain and not going ahead secretly behind closed doors,” she explained on her website.

She added: “As a writer I have been able to represent Charlie Gard’s family for free. I am paid for writing their stories which means they have never paid me a penny and have been able to keep all money raised for him.”

John Cooper QC, an expert on media law who advises clients on crisis management, said the decision to go for publicity was a complex one.

“In my caseload I’ve handled a number of very worrying cases where families of people are in dispute with hospitals about treatments. Sometimes they do not have the strength, confidence or support to deal with the media and the public and often find themselves under pressure to agree with the hospital over a course of action.”

Das said it appeared that some of those who had supported the Charlie Gard campaign were now approaching the parents of other terminally ill children, seeking to highlight their cases. “I do not think, personally, we have seen the end of this.”

Highlighting a new group supporting a very similar case involving a different disabled boy, she said: “You will see there that the people posting for the last couple of days are all posting with the blue hearts, which is iconic of the Charlie’s Army team.”

Charlie had a mitochondrial disease that caused progressive muscle weakness and brain damage, which his parents believe could have been treated by experts in the US.

When the couple ended their legal battle, Yates said that “had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy little boy”. But doctors at Great Ormond Street hospital, where he was treated, did not agree. Lawyers representing the hospital, which has pledged to learn lessons from the “bruising” case, said the “clinical picture” six months ago had shown irreversible damage to Charlie’s brain.

The protracted legal battle over Charlie’s treatment was mirrored by a campaign waged against Gosh and its staff on social media, something that dismayed the judge hearing Charlie’s case, Mr Justice Francis.

Das said the reverberations from Charlie’s case would be felt for many years.

“This has implications for the ways in which the public engaged with this case, and the way the public engages with social democratic institutions in the public sphere.”

1 Reply

@maxdancona,

maxdancona wrote:

I don't think this story fits the "government overreach" narrative. This is the story of the medical ethics surrounding a critically ill child.

Well said. Thanks.

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@Walter Hinteler,

Walter Hinteler wrote:

In this context it might be interesting to read the decision

http://hudoc.echr.coe.int/eng#{"itemid":["001-175359"]}

of the ECHR. (You have to copy the complete link above, sorry.)
It sums up all previous arguments at the UK courts as well as the relevant laws.

Thank you Walter that was very interesting, and it revealed something I hadn't been aware of that GOSH had at one point agreed to attempt the treatment.

If I've not been clear so far, I will try one last time.

I don't think the doctors at GOSH or the courts who heard this case were heartless bureaucrats who had no true concern for the child or no sympathy for the parents. Nor do I believe the courts egregiously misapplied the existing law to this case. I do think they could have applied it in a way that favored the Gards, but that they didn't wasn't in any way unreasonable.

I also don't believe the State has no role in interceding on behalf of a child, and in opposition to the wishes of the parents, when the child's life and well being are at stake.

I do think, at one point early on, they underestimated (although not greatly at all) the chances of the treatment's success and overestimated the harm that moving Charlies to the US would cause him. I am of course not a doctor, but while I've found no clear and convincing evidence that the treatment had anything but the tiniest chances of success, I also have found no clear and convincing evidence that moving Charlies to the US for the treatment would have measurably increased his suffering anymore than the prolonged legal battle did.

This is not a case of the Leviathan of the State indiscriminately ripping away parental rights only because it can, but it is a case where the State has imposed it's will over the parents, and presumed that their concern for Charlie's condition and quality of life was more legitimate than that of his parents.

Slippery slope arguments are always contested and to a certain extent fairly so. Because the State has a enormous power over parents doesn't mean that it will abuse that power, however, conversely, if it doesn't have that power it can't ever abuse it.

People who trust the State in general or in this case are not clearly irrational or desirous of creating an environment akin to that depicted in 1984. Generally speaking, the State can be trusted, but we all have seen numerous instances when it (whether in the US or any other nation) abuses that trust.

There is a general legal principle here that holds it is better for 100 guilty men to go free than to wrongly convict one, and I agree completely with that despite the fact that it leads to actual criminals being let free to prey on law abiding citizens. This principle recognizes that the State can be and often is wrong. I feel this way about this case and the broader scenario of which it is an example. Better that 100 Charlie Gards have their suffering marginally prolonged than to eliminate any possibility that one of them can be saved.

Someone does have to decide in these difficult cases and I believe it should be loving parents and not the State.

1 Reply

@Walter Hinteler,

Walter Hinteler wrote:

... a grassroots network of supporters calling themselves “Charlie’s Army” and high-profile figures including Donald Trump,Nigel Farage and Pope Francis ... So-called pro-life preachers, anti-abortion people, populist figures such as Nigel Farage were waiting to get a hold on to this,”... “There are lots of people who are disaffected, who are feeling they need a cause to hold on to. It’s a complex matter as to why people get so emotionally involved, because it comes from a place of general anguish, and people get really emotionally involved in it – like it’s a soap opera narrative ... it appeared that some of those who had supported the Charlie Gard campaign were now approaching the parents of other terminally ill children, seeking to highlight their cases ... a campaign waged against Gosh and its staff on social media

This is extremely alarming. Not least because of Nigel Farage sticking his oar in. That total creep.

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@Finn dAbuzz,

Finn,

How would your opinion change if the story were opposite... and the parents wanted to take a child off of life support, but the medical establishment believed that the child could be saved and that further medical intervention was ethically necessary?

Would you stick to your opinion that the parents should be able to make this decision?

1 Reply

@maxdancona,

The courts enforced the decision of the doctors. Are you joining the argument that the courts are not an arm of the State?

Without the State's involvement the doctors could not do anything to enforce their decision.

Oh and I haven't made the argument that this case represents flagrant and heartless overreach by the State (I do wish people would read what I write before firing off glib replies)

If one believes that the parents wishes should not have been overridden by the State (and I am certainly not a lone voice in the wilderness here...in the US or the UK) then by definition the State has overreached.

1 Reply

@maxdancona,

maxdancona wrote:

Finn,

How would your opinion change if the story were opposite... and the parents wanted to take a child off of life support, but the medical establishment believed that the child could be saved and that further medical intervention was ethically necessary?

Would you stick to your opinion that the parents should be able to make this decision?

Without more facts to consider I would probably favor the State's involvement and I see nothing contradictory in this to anything else I have written. The underlying principle of the sanctity of life should steer all of these considerations, and that is precisely what at least one court stated in the material Walter provided a link to.

1 Reply

One of the things we elect a government for, and expect from it, is the provision of a fair, honest, open and independent justice system, and we consent for that justice system to decide matters like these. That justice system is not 'the State' in the sense that some on here seem to think.

1 Reply

@centrox,

centrox wrote:

One of the things we elect a government for, and expect from it, is the provision of a fair, honest, open and independent justice system, and we consent for that justice system to decide matters like these. That justice system is not 'the State' in the sense that some on here seem to think.

What is it then?

It's certainly not a private institution and it certainly is not an institution like a religion. It's not a fraternal or charitable organization. It isn't constructed of volunteers from the populace and it renders decisions based on the product of the legislative body and (in the case of the US and UK) in civil cases, Common Law that has been established by preceding courts (and at one time a King and or group of nobles)

Without the power of other components of the State it has no ability whatsoever to enforce any of its decisions, fair or otherwise, and would be largely ineffectual and ignored.

It should be independent of other arms of the State in the sense that the executive and legislative branches shouldn't be allowed to dictate it's decisions, but like them it is an arm of the State.

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@Finn dAbuzz,

Quote:

Are you joining the argument that the courts are not an arm of the State?

Without the State's involvement the doctors could not do anything to enforce their decision.

I am not sure that this is relevant, but I think I disagree with you. The parents were asking for a medical intervention. The parents couldn't have done anything without the doctors.

Had the State sided with the parents, it would have also been a state involvement. Yes, I get the fact that there was a US medical team and a GoFundMe page... but the child was already in the doctors' care.

I would be interested to hear your answer to the question I posed about the opposite situation.

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Charlie Gard Has Passed

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