Alfie Evans and the end of the myth of the UK as a free country.

[Fisherking]

Alfie is not the first and I seriously doubt he will be the last victim of the NHS and the courts.

So, I am just wondering how such a flagrantly tyrannical action can be justified by its proponents.

[Husar]

Who is Alfie Evans and why should I care? Why is there no link in the OP and is this the end of traditional standards of how to properly start a thread?

https://www.nbcnews.com/news/amp/ncna869776

And listening to the parents is like letting a policeman investigate the murder of his affair when his wife is the top suspect.

From the link above:

"Our lives have been turned upside down by the intense focus on Alfie and his situation," Evans said Thursday outside Liverpool's Alder Hey Children's Hospital, where Alfie has been treated for more than a year.

He thanked the hospital staff "for their dignity and professionalism during what must be an incredibly difficult time for them too."

Apparently the father isn't angry any more, so why should I be?

This poor child was the victim of "a rare degenerative brain condition that left him with almost no brain function" and it wasn't "the NHS" or "the courts" that gave him that so I see no reason for your populist implication of how rotten "the system" is. If you want to find the rotten part of the UK, look at the financial "free market" system that places spikes in the ground so that rich dorks don't have to see the homelessness that is caused by their own greed.

https://www.independent.co.uk/news/u...r-9506390.html

[Beskar]

America loves to hate on the UK's NHS as an excuse to prop up its own failures. Despite the fact Alfie would have died over a year ago in the USA since no insurance company would fund £600 a day treatment (which would be like 5times more expensive in USA, at least) for 18 months and this was done for free. Even then, withdrawing medical intervention was nothing to do about cost, it is to do about child protection. In this case, it is protecting the child from being stuck in a machine, suffering every single day (if he can feel the pain) with no hope of any kind of treatment.

Let's completely call out the Vatican hospital scam which wanted £65,000 to stick a tube in Alfie's throat and to keep him alive for only 2 weeks which was paraded as some kind of miracle place despite them being in for a quick buck and publicity stunt at the expense of a dying child.

I am simply going to reply with Dr Dominic Pimenta's reading of the court case notes to summarise the situation. You will clearly see it is nothing to do "tyranny" in the slightest.

I am deeply disturbed by #AlderHey and #AlfieEvans case. What this tragic case desperately needs is less opinions and more facts.

Alfie was born to young parents aged 18 & 19 in May 2016, who from the court accounts delivered a happy healthy baby and coped extremely well Alfie first developed new strabismus (squint) at 2 months, as well as subtle signs of delayed development: lack of head control, sleeping all the time, not reaching for things. Alfie, now 6 months, was taken to a specialist children’s doctor, who formally documented his development was at the stage of a 6-8 week old. A MRI scan showed widespread abnormal changes to his brain, specifically the cortex (see below), which were not associated with any specific neurological syndrome but suggested mitochondrial disease. Alfie then developed a fever and shortly after seizures that persisted. He rapidly deteriorated, having short episodes of apnoea (not breathing at all), so he was moved to the Intensive care unit at #AlderHey where he has remained since Dec 2016- 15 months ventilated with a machine via a tube directly into his lungs, fed through a tube into his stomach and hydrated through tubes directly into his bloodstream. Subsequent MRI scans have shown progressive and severe destruction of the brain and brainstem, again suggestive of mitochondrial disease. Later EEGs in January 2017 (electrical tracings of Alfie’s brain) have been documented to be “essentially” flat, consistent with no upper brain activity whatsoever.

Now the human nervous system (from cortex to brain stem to spine to nerves in hands and feet and muscle) is very complex. All of the thinking that makes you YOU occurs in your cerebrum, the big squishy pink thing at the top. Imagine this as your consciousness. Much of the more basic functions that you don’t consciously think of occur in your brainstem- moving your eyes together, breathing. The spine is mostly a motorway for signals from your brain to your muscles to move things and from your skin to your brain to feel things. However there are some very basic loops that occur in the spine as well, so called primitive reflexes. These serve functions like helping us stay standing.

Returning to Alfie, the electrical tracings of his brain and images show no activity. The bit that makes him HIM is damaged beyond all repair. He may move or twitch with reflexes or seizures but this is not consciousness. Which is the key point because unfortunately, and unlike in the very similar and recent #CharlieGard case, there is no diagnosis for Alfie. No one knows what exactly is causing this progressive and destructive brain damage. The possibilities based on his symptoms point to some form mitochondrial disease- the parts of the brain cells which provide raw energy to keep those cells functioning don’t work. Very little is know about these diseases- #CharlieGard was one of only 16 cases ever identified. In court it was posited Alfie’s diagnosis may be unique and even become known as Alfie’s disease. We are beyond the limits of modern medicine here and intersected with the post-truth culture we now live in has led to protestors trying to storm a children’s hospital.

We don’t have any way to reverse brain damage. From the day you are born you lose brain cells at a rate of ~9000/day. We have no way to reverse this. If we did we could cure stroke, dementia, traumatic brain injury, Parkinson’s, multiple sclerosis, maybe even ageing itself. Characterising Alfie as having a “chance” to fight for is grossly irresponsible. Tragically his damage, whatever the underlying cause, is beyond our reach to fix. In the meantime Alfie has tubes and wires stuck into his body & undergoes uncomfortable procedures daily. From his brain activity he may not feel anything at all, but what from what we know about intensive care survivors if he can “experience” then he will be suffering.

Bembino Gesu, the Paediatric Hospital in the Vatican that has offered to take #Alfie, has not offered any “treatment”. They’ve offered to cut a small whole in Alfie’s neck so the breathing tube can be placed directly into his lungs instead of his nose, and basic hydration for €65,000. And that’s it. They’ve offered no further tests or specialists or a diagnosis. In the same way they offered to #CharlieGard without a legitimate medical basis. Bembino Gesu is also not as sterling organisation as is advertised: https://www.apnews.com/9a0647481aee487e99c9b3facf6c6691

So we are left with a tragically unwell child, likely suffering if he can feel anything at all, whose life is being prolonged artificially with no quality of life or chance of improvement. And that’s exactly why the children’s doctors and nurses at #AlderHey, who already do one of the hardest jobs in our profession, applied to withdraw the invasive support Alfie was having. And that’s why several courts and court appealed all agreed with them. This isn’t “murder” or “euthanisia” or “state control”. The state kept Alfie alive for nearly 18 months, at not a penny cost to his suffering family, and we should be immensely proud of that. And please remember #AlfiesArmy that there are other children and suffering parents in that hospital as well. You are scaring them. Go home and maybe donate your time and money to medical research if you really want to help.

Now please, read the facts before jumping upon Fox News headlines bandwagon. It is very insulting to all the skilled professionals and excellent services which did so much for Alfie, the best they could do and more.

[Montmorency]

The questions most important:

What should a system do by default?

How much can be demanded from the system for individuals' special cases?

[Fisherking]

Now please, read the facts before jumping upon Fox News headlines bandwagon. It is very insulting to all the skilled professionals and excellent services which did so much for Alfie, the best they could do and more.

Sorry, the only coverage I’ve watched on this was BBC. But just for the sake of discussion:
It is not about the quality of care provided by the NHS.
It doesn’t matter one bit what treatment he received or what his chances of recovery were. The issue here is parental rights and the right of travel.

Any parent with a child would understand their desperation and seeking slim chances but that isn’t very relevant either.

NHS is within its purview to declare it a hopeless case. That is also understandable.

The tyranny arises from the NHS court case and the court’s denial of allowing the parents or child to leave the country and pursue what ever they may choose. In effect it is a declaration that all UK subjects are property of the state.

It would not be news or even controversial had the NHS simply stood aside and allowed further events to unfold for good or ill.

By what right or authority does the bureaucracy and the courts have to deny people their own liberty and rights to make decisions which effect their own family and not the health of the nation?

[Montmorency]

Sorry, the only coverage I’ve watched on this was BBC. But just for the sake of discussion:
It is not about the quality of care provided by the NHS.
It doesn’t matter one bit what treatment he received or what his chances of recovery were. The issue here is parental rights and the right of travel.

Any parent with a child would understand their desperation and seeking slime chances but that isn’t very relevant either.

NHS is within its purview to declare it a hopeless case. That is also understandable.

The tyranny arises from the NHS court case and the court’s denial of allowing the parents or child to leave the country and pursue what ever they may choose. In effect it is a declaration that all UK subjects are property of the state.

It would not be news or even controversial had the NHS simply stood aside and allowed further events to unfold for good or ill.

By what right or authority does the bureaucracy and the courts have to deny people their own liberty and rights to make decisions which effect their own family and not the health of the nation?

We've had almost the same discussion here a year ago with the Charlie Gard case.

I think (if not, it can be shown, but for now let's say it is) that the courts and hospitals are correctly applying UK and European human rights laws as they stand.

Without revisiting the discussion on parental rights (and I'm suspicious...), answer this for me. If the Parliament promulgated the following law, would you be satisfied?

In the case of medical care for terminal patients, a parent (or caretaker more generally, in the case of the elderly) may make the final decision whether to withdraw the patient from NHS care. This could be for the purpose of letting patient die at home, or die in some other healthcare system*

*That's how I'm framing it, but you should be readily able to imagine a more neutral framing in legislation

If this provision were overriding on the state's considerations according to other law, would you feel your concerns have been mollified?

[rory_20_uk]

He was a dud and active treatment should have been stopped over a year ago. Not like the NHS has money to waste on lost causes.

[Fisherking]

We've had almost the same discussion here a year ago with the Charlie Gard case.

I think (if not, it can be shown, but for now let's say it is) that the courts and hospitals are correctly applying UK and European human rights laws as they stand.

Without revisiting the discussion on parental rights (and I'm suspicious...), answer this for me. If the Parliament promulgated the following law, would you be satisfied?

In the case of medical care for terminal patients, a parent (or caretaker more generally, in the case of the elderly) may make the final decision whether to withdraw the patient from NHS care. This could be for the purpose of letting patient die at home, or die in some other healthcare system*

*That's how I'm framing it, but you should be readily able to imagine a more neutral framing in legislation

If this provision were overriding on the state's considerations according to other law, would you feel your concerns have been mollified?

I have no problem with with parents or caretakers withdrawing a patient or even with NHS stopping treatment as hopeless. It is after all a public entity spending public money. It is indeed a replay of Charlie Gard and another case shortly afterward. The problem I see is with the NHS and the courts preventing people from pursuing their own courses of action. Be that to die at home or seek treatment outside the county. As I said earlier, it would not be news or controversial had NHS merely allowed them to go on their way. It it the interposition of the apparatus of the state, once again, that makes it a tyranny.

[Beskar]

...The problem I see is with the NHS and the courts preventing people from pursuing their own courses of action. Be that to die at home or seek treatment outside the county...

Actually that choice was allowed and wasn't prevented.
As for the latter, I mentioned the Vatican Hospital scam in my post.

But there is the other point will emphasise again, Children have rights. They are not the property of their parents, they are their own persons and as such, their rights should be protected. The state has legal obligations to protect the rights of children, it is why things like child protection services exist too. In this case, the parents might have the best of intentions, but their actions would have caused their child suffering. There was no treatment, only torture. If there was treatment, the courts would have allowed the child to be moved to another country. If there was no reasonable suspicion of suffering either, they would have allowed the child to move. The state is not some cruel apparatus out to screw everyone over, even if that is your ideological belief.

The definition of Tyranny is as follows: "cruel, unreasonable, or arbitrary use of power or control."
It wasn't cruel, it was reasonable, and the decision was not arbitrary nor was the use of power or control. It was completely justified. As such, the action was not tyrannical. You may have your opinion, but this does not change the facts.

[Seamus Fermanagh]

As a concomitant of the existence of the United Kingdom, a subject of the UK has no inherent rights per se. Numerous rights have traditionally been associated with UK citizenship, and those traditions have held a lot of power over the body politic. The worst despots of English history were more constrained in their use of power than were any other contemporary executives in the rest of Europe.

These traditional, albeit not constitutional, rights were subsequently spelled out in an act of Parliament. Though any act of Parliament could, subsequently, be overturned, the current electoral system strongly mitigates against the removal of this act regarding the rights of citizens in the UK.

gives UK citizens the following rights:
the right to life
freedom from torture and degrading treatment
freedom from slavery and forced labour
the right to liberty
the right to a fair trial
the right not to be punished for something that wasn't a crime when you did it
the right to respect for private and family life
freedom of thought, conscience and religion, and freedom to express your beliefs
freedom of expression
freedom of assembly and association
the right to marry and to start a family
the right not to be discriminated against in respect of these rights and freedoms
the right to peaceful enjoyment of your property
the right to an education
the right to participate in free elections
the right not to be subjected to the death penalty

These rights are more numerous that the CODIFIED individual rights of a citizen of the USA.

[Fisherking]

Actually that choice was allowed and wasn't prevented.
As for the latter, I mentioned the Vatican Hospital scam in my post.

But there is the other point will emphasise again, Children have rights. They are not the property of their parents, they are their own persons and as such, their rights should be protected. The state has legal obligations to protect the rights of children, it is why things like child protection services exist too. In this case, the parents might have the best of intentions, but their actions would have caused their child suffering. There was no treatment, only torture. If there was treatment, the courts would have allowed the child to be moved to another country. If there was no reasonable suspicion of suffering either, they would have allowed the child to move. The state is not some cruel apparatus out to screw everyone over, even if that is your ideological belief.

The definition of Tyranny is as follows: "cruel, unreasonable, or arbitrary use of power or control."
It wasn't cruel, it was reasonable, and the decision was not arbitrary nor was the use of power or control. It was completely justified. As such, the action was not tyrannical. You may have your opinion, but this does not change the facts.

So, you find it reasonable and justified that government prevented others form travel outside the UK and see nothing arbitrary in that decision?

Is it typical that you submit your holiday plans to a government body before travel?

It is despotic to dictate to others what they may or maynot do. Why should NHS care once they have made their pronouncement. It was cruel to deny sustenance to the child in order to assure his death. This is merely another example of “child rights” being used to control people. It is arbitrary to even think that such a decision is what is best for the child.

What you cite is governments justification in its arbitrary decision. It was only one governmental body upholding the wishes of another governmental body against the wishes of the parents.

Explain how liberty was upheld. Explain how this is not degrading treatment. Explain how there was fair trial of the facts, because it was only government judges upholding the wishes of NHS, in the absence of a jury only government adjudicates the facts.

The intervention by the NHS and the court served no one in the end. No one was going to be harmed by the child leaving the country. It turned into nothing more than government imposing its will on grieving and desperate parents and it does not present the nation in a good light.

[rory_20_uk]

So, you find it reasonable and justified that government prevented others form travel outside the UK and see nothing arbitrary in that decision?

Is it typical that you submit your holiday plans to a government body before travel?

It is despotic to dictate to others what they may or maynot do. Why should NHS care once they have made their pronouncement. It was cruel to deny sustenance to the child in order to assure his death. This is merely another example of “child rights” being used to control people. It is arbitrary to even think that such a decision is what is best for the child.

What you cite is governments justification in its arbitrary decision. It was only one governmental body upholding the wishes of another governmental body against the wishes of the parents.

Explain how liberty was upheld. Explain how this is not degrading treatment. Explain how there was fair trial of the facts, because it was only government judges upholding the wishes of NHS, in the absence of a jury only government adjudicates the facts.

The intervention by the NHS and the court served no one in the end. No one was going to be harmed by the child leaving the country. It turned into nothing more than government imposing its will on grieving and desperate parents and it does not present the nation in a good light.

Why did they wait 18 months before going? Why did Italy await an equally long time? You honestly think that transporting them by ambulance to a plane, then airlifting them to another country would at that point be helpful? Right at the start that would be OK, but by the end? This was nothing but a PR game.

As has been mentioned, the only "liberty" that they would have got in the USA is the "right" to die from lack of money.

The UK continues to have the freedom to pack one's bags and leave to wherever else in the world one wishes to live. They could have done this at the start and can do it now. They will not be missed.

[Fisherking]

Why did they wait 18 months before going? Why did Italy await an equally long time? You honestly think that transporting them by ambulance to a plane, then airlifting them to another country would at that point be helpful? Right at the start that would be OK, but by the end? This was nothing but a PR game.

As has been mentioned, the only "liberty" that they would have got in the USA is the "right" to die from lack of money.

The UK continues to have the freedom to pack one's bags and leave to wherever else in the world one wishes to live. They could have done this at the start and can do it now. They will not be missed.

I have said time and again that I had no problem with the NHS’s decision to treat or not to treat the patient. My only problem was their seeking of a court decision to prevent the patient or his family from going elsewhere.

However, I do take issue with your apparent ignorance of medicine in the US. In large part the reason hospital care is so expensive in the US is to make up for those unable to pay and there still are charity hospitals there, even ones who specialise in children and hopeless cases.

Apparently that right to pack one’s bags only seems to apply before seeking medical treatment from the NHS.

[rory_20_uk]

I have said time and again that I had no problem with the NHS’s decision to treat or not to treat the patient. My only problem was their seeking of a court decision to prevent the patient or his family from going elsewhere.

However, I do take issue with your apparent ignorance of medicine in the US. In large part the reason hospital care is so expensive in the US is to make up for those unable to pay and there still are charity hospitals there, even ones who specialise in children and hopeless cases.

Apparently that right to pack one’s bags only seems to apply before seeking medical treatment from the NHS.

As was explained the child has rights and the experts thought the parents were not enforcing them. The whole rule of law thing? On this side of the pond we still have this old fashioned attachment to it.

And healthcare in the USA to choose one of many graphs that demonstrate the same thing:



The costs are not defensible in any way whatsoever. They are categorically the worst in the world - some cost more for better results, some cost less for worse results. And then there's the USA. That there are a few charity hospitals does not mean everything is OK.

No, people can leave the UK whenever they want except when they are putting the well-being of others at risk which is a pretty rare occurrence. They can move to all sorts of other countries and in general find out how much worse the other countries are (the Nordics and New Zealand excepted).

[Fisherking]

rory, the child welfare issue is an absurdity in this case as it was with the others. They were going to another first world country, even a member of the EU, as is the UK for the time being. If there is no issue of people going to those countries on holiday there should not be an issue of them going there for medical treatment, providing the government of the UK is not paying for it.

All of this just seems to point to bureaucratic arrogance or deep seated insecurity on the part of the NHS. I am at a loss for logical explanation other than that.

Government “experts” testifying to government positions should not inspire confidence in anyone. They take the position that preserves their jobs and personal wellbeing.

As to the cost of US healthcare you will get no argument from me. Still, lifesaving care is not refused there due solely on ability to pay.

[rory_20_uk]

Let's start at the basics.

Primum non nocere

Yes things are often not this clear these days but this is why we rely on experts whether the risks outweigh the benefits. The experts - which neither you no I are and have access to none of the salient information. Treatment should be based on need and not the ability to pay.

This wasn't lifesaving care that's the point! Treatment was viewed as futile. Further intensive things are then a form of torture. It really is very simple.

And I have had a patient who after having a stoke on the plane to the USA was then treated to the absolute limit of her health insurance and was then stuck back on a plane as soon as her insurance ended even though this was against the advice of the treating physician in the USA.

[Husar]

If there is no issue of people going to those countries on holiday there should not be an issue of them going there for medical treatment, providing the government of the UK is not paying for it.

Isn't that the issue?

Were they willing to pay for the transporting costs or should the hospital have just taken all the tubes out and given them the child for their trip? In the latter case he might've died just as well before they even got to the car, in the first case the government would have had to pay for a trip that the government saw as essentially useless while the mnoney might have been missing for more hopeful cases. Or would the other hospital have paid for the transport costs?

[Montmorency]

All of this just seems to point to bureaucratic arrogance or deep seated insecurity on the part of the NHS. I am at a loss for logical explanation other than that.

Government “experts” testifying to government positions should not inspire confidence in anyone. They take the position that preserves their jobs and personal wellbeing.

Do you believe that government review tends to arbitrarily find in favor of whatever the state is doing? That's doubtful, and a distinct issue here.

Finding out whether the NHS/courts are being arbitrary here depends on knowing what the law says, and how it has been applied and invoked elsewhere. Facially, the Charlie Gard case suggests the process is consistent at least - but perhaps you would say it has to do with bureaucratic bias by the same token.

Or maybe you have a more general concern with accountability in the framework? (Just because juries are made up of private citizens does not mean they are appropriate for decision-making.)

We'll take a look later.

[Fisherking]

Isn't that the issue?

Were they willing to pay for the transporting costs or should the hospital have just taken all the tubes out and given them the child for their trip? In the latter case he might've died just as well before they even got to the car, in the first case the government would have had to pay for a trip that the government saw as essentially useless while the mnoney might have been missing for more hopeful cases. Or would the other hospital have paid for the transport costs?

In this case the transportation costs and vehicle were covered by donations and an air ambulance was actually sitting at the airport. As I understand it the child had had citizenship conferred on him by Italy.

_________________________________________________________

As to experts, they are merely people of credential paid to say what is most beneficial for their client. Were it not so the client would find someone else and pay them.

Who was it that said: “Science is an endeavour to prove the ignorance of experts”?

Perhaps the better question here would be; who would have been outraged or harmed had the patient been allowed to go? Would national prestige have taken a fall or would people look on the NHS with a sceptical eye to their competence?

The case would likely be totally unknown to us but for the NHS trying to prevent further treatment.
Wasn’t that an even greater waste of resources in legal costs and time in court?

It seems strange to me that the 18 months in hospital was not torture but once the NHS washed their hands of the case and prolonging of life then becomes intolerable. Who determined that? Who’s experts? What makes it so? It is merely opinion. Arbitrary opinion.

[rory_20_uk]

After 18 months of treatment it was determined the risk / benefit no longer held. Further invasive treatment since is no longer in the patient's best interests is torture. It is really very simple.

Almost everything outside of maths is opinion. And I am not prepared to live in some weird anti-expert let-the-mob-decide world.

[Fisherking]

After 18 months of treatment it was determined the risk / benefit no longer held. Further invasive treatment since is no longer in the patient's best interests is torture. It is really very simple.

Almost everything outside of maths is opinion. And I am not prepared to live in some weird anti-expert let-the-mob-decide world.

Ether you are a hired expert or happy to remain ignorant and allow others to make your decisions for you.

Who were the experts? What fields of study? Did they hire physics or empaths? Who else is going to say with certainty how a person in a coma feels about their treatment. It is a field where I would be highly sceptical of anyone claiming to be an expert. Anyone who would deign to sentence some to certain death based on their personal opinion is a monster and any court accepting such opinion as truth, no better.

While there are a myriad of fields where consultants are of value, this is simply one of the unknowable.

To me the case is an example of fools rushing in where angles fear to tread. It is, or should be, outside the scope of government to insert its self in such issues. Government is not a parent. It has no ones best interest at heart except that of government. Pretending otherwise is foolishness.

[rory_20_uk]

So those with the "qualifications" of being their parents suddenly are experts on the finer points of medicine?

If one is awaiting perfect knowledge then one has no place in Medicine in the first place - best stay in the world of philosophy where things can be pontificated over for the duration. Doctors need to make imperfect decisions on imperfect evidence. That is the job.

[Fisherking]

There is nothing wrong with being imperfect. Understanding one’s knowledge and limitations is admirable.

The rub comes with dictating to others what their course of action should be once care has ended.

It is not the care or dedication of those involved in the treatment or even the decision to stop. It is not disparaging the medical system to say it is beyond or knowledge to heal. I see no shame in that.
It is the going beyond the treatment and making decisions beyond the care. That is beyond the field of medicine. Why try to impose their will upon seemingly dying patients unless you have a fear of medicals.

[Husar]

But then you can also believe the stalker who says the woman he keeps harassing just can't express her feelings because she is possessed.
It is simply beyond our knowledge so the police and judge should stay out of it unless they can prove she is not possessed by a curse, which they can't.

[Seamus Fermanagh]

There is nothing wrong with being imperfect. Understanding one’s knowledge and limitations is admirable....

The more I learn, the more aware I become of just how great my limitations are...

[Fisherking]

But then you can also believe the stalker who says the woman he keeps harassing just can't express her feelings because she is possessed.
It is simply beyond our knowledge so the police and judge should stay out of it unless they can prove she is not possessed by a curse, which they can't.

In a criminal case it is typically a jury who decide the facts of the case. In this case the injured party is a government agency complaining that the patient's family is not willing to just let the child die and want to leave the county seeking further treatment. Government deciding if government is actually injured and what course to take. I see no harm in allowing the family to decide their course of action and find the government case petulant.

[Montmorency]

Perhaps the better question here would be; who would have been outraged or harmed had the patient been allowed to go?

Before one can answer this, I think it needs to be turned around. Do you see any circumstance (without regard for any specific existing law or rule) in which the state (-run healthcare system) should or may overrule a caretaker in their decision on behalf of the ward to withhold, reject, or terminate
(1) a treatment or practice
(2) matriculation into this or parallel system?

It has no ones best interest at heart except that of government. Pretending otherwise is foolishness.

That's uselessly-circular thinking. Garbage in, garbage out implies the alternative. And government isn't unitary, which is in fact compatible with its components frequently contradicting each other; you're repeatedly alluding to some diffuse "interest", but it's better framed in terms of who gets the say.

In a criminal case it is typically a jury who decide the facts of the case.

Well, in the Anglo tradition... I recall it is uncommon beyond, and I'm unsure to what extent it ought to be applied.

[Husar]

In a criminal case it is typically a jury who decide the facts of the case.

No, that's wrong. I was in court once and there was no jury.

In this case the injured party is a government agency complaining that the patient's family is not willing to just let the child die and want to leave the county seeking further treatment. Government deciding if government is actually injured and what course to take. I see no harm in allowing the family to decide their course of action and find the government case petulant.

Well, if there is the chance that the child is suffering due to the decision of the family, the government and court have to represent the interests of the child. When parents are beating their child blue and breaking its bones, I suspect you also wouldn't say the parents have to decide how best to raise their child.
Most governments don't even let people decide when to commit suicide and try their best to save them. All of this is usually considered a good thing, partially because people often think differently about these things once the emotions have subsided. This father wanted to sue the government and now he doesn't anymore according to the article I found. Why do you think that is?

[Montmorency]

Most governments don't even let people decide when to commit suicide and try their best to save them. All of this is usually considered a good thing, partially because people often think differently about these things once the emotions have subsided. This father wanted to sue the government and now he doesn't anymore according to the article I found. Why do you think that is?

I would in theory endorse a formal self-termination mechanism. The details are a pain in the ass, obviously.

[Montmorency]

I won't be going into other cases after all, because I'm not sure what primary sources to look for (to the extent this information is even publicly available).

There is the Charlie Gard case, which is briefly noted in the judgement below and the appeal judgement to which I link below. The appeal judgement in the Gard case makes reference to the 1989 Children Act whereas the Evans judgement does not. The appeal permission to the Evans judgement goes into further detail on relevance of the CA1989. (I won't be explicitly evaluating here the argumentation in the Gard judgements against that of the Evans case, though we may refer to the Evans appeal for some comparison.)

Maybe I'm missing something - if so, @rory_20_uk can help me out - but here's what I've gathered so far on the legal and procedural application relevant to the thread topic:

Children Act of 1989

[Charlie Gard appeal rejection]

[Alfie Evans Court Judgement]

[Alfie Evans appeal rejection]

[Supreme Court appeal rejection]


Some points about the CA1989 obligations and authorities:

Section 31 CA 1989 provides:
"(2) A court may only make a care order or supervision order if it is satisfied—
(a) that the child concerned is suffering, or is likely to suffer, significant harm; and
(b) that the harm, or likelihood of harm, is attributable to—
(i) the care given to the child, or likely to be given to him if the order were not made, not being what it would be reasonable to expect a parent to give to him; or
(ii) the child's being beyond parental control."
Section 31(9) defines 'harm' as "ill-treatment or the impairment of health or development including, for example, impairment suffered from seeing or hearing the ill-treatment of another." The component parts of that definition are further defined as follows:
"development" means physical, intellectual, emotional, social or behavioural development;
"health" means physical or mental health; and
"ill-treatment" includes sexual abuse and forms of ill-treatment which are not physical.

The definition is deliberately widely drawn. Section 31 provides the principal route for child protection in England and Wales and must, insofar as it can be achieved, be capable of capturing all forms of child abuse. Crucially, however, it comes into play in care proceedings only when a child is "suffering, or likely to suffer, significant harm" which is attributable to the care given to the child "not being what it would be reasonable to expect a parent to give to him." (or the child being beyond parental control).

[...] it should not be overlooked that care proceedings are not the only statutory route whereby the court has jurisdiction to interfere with the exercise by a parent of their parental responsibility. Far more common than proceedings under section 31 of the Children Act 1989 are proceedings under section 8 of the Children Act 1989, Child arrangements orders and other orders with respect to children.

Section 8.1 provides
"(1)In this Act —
"child arrangements order" means an order regulating arrangements relating to any of the following—
(a) with whom a child is to live, spend time or otherwise have contact, and
(b) when a child is to live, spend time or otherwise have contact with any person;
"a prohibited steps order" means an order that no step which could be taken by a parent in meeting his parental responsibility for a child, and which is of a kind specified in the order, shall be taken by any person without the consent of the court;
"a specific issue order" means an order giving directions for the purpose of determining a specific question which has arisen, or which may arise, in connection with any aspect of parental responsibility for a child".

Section 8, then, sets out the orders available to the court when resolving disputes between parties where a disagreement has arisen in relation to the exercise of parental responsibility. Such disputes are usually in relation to residence and contact following the breakdown of the relationship between the parents of a child, but also the section covers specific issue and prohibited steps order.

The resolution of every dispute under section 8 Children Act 1989 is determined by reference to the welfare principle enshrined in s.1 CA1989 whereby "the child's welfare shall be the court's paramount consideration." In other words, the decision is made by reference only to the best interests of a child.

It should not be thought that because section 8 applications fall outside s31 CA 1989 they cover only less serious matters than those dealt with by the courts under s31CA 1989 and the inherent jurisdiction. On the contrary, the courts hearing section 8 cases can and often do deal with allegations of the utmost seriousness relating, for example, to allegations of child sex abuse and domestic violence of every type from a verbal abuse up to and including marital rape and attempted murder.

Nor is section 8 limited to disputes between those parties who have parental responsibility. Third parties without parental responsibilities (for example a grandparent) can, with leave (granted under s10(2)(b) CA 1989) make applications under section 8.

Significant for the purpose of this present matter is that it is common ground that an NHS Trust can (with leave) seek a specific issue order under section 8 in a serious medical treatment case, as an alternative or more usually and preferably in parallel with an application under the inherent jurisdiction.

It is correct that, before granting leave, the court is required to have reasonable cause to believe that the child is likely to suffer significant harm if the inherent jurisdiction is not invoked, but the application of the provision is expressly limited to local authorities.

107. A primary purpose of the Children Act 1989 was to delineate, limit and provide structure for the roles respectively of local authorities and the courts. Prior to the Children Act coming into force, local authorities had regularly resorted to the inherent jurisdiction of the High Court in order to achieve some form of control over the lives of individual children and their families. A clear purpose of the 1989 Act was to close down or at least limit that avenue and to channel all such cases through the statutory scheme embodied in Section 31 of the Act, which requires the state in the guise of a local authority to satisfy the court that the significant harm threshold criteria are established before the court can consider going on to make orders to give the local authority power to control the life of an individual child in a family.

But the parents suggest a wider analogy, in particular with proceedings for a care order but also with adoption proceedings. Section 31 of the Children Act disables a court from granting a care order to a local authority unless the child has suffered or is likely to suffer significant harm, attributable to care below a level which it would be reasonable to expect a parent to give. Here, in the panel's view, one reaches the nub of the parents' argument. If significant harm (or its likelihood) has to be established before a child can be removed - perhaps only temporarily - from the home of his parents under a care order, why does it not need to be established before he can be removed, permanently, from them and from everything in this world, by death?
A child, unlike most adults, lacks the capacity to make a decision in relation to future arrangements for him. Where there is an issue in relation to them, the court is there to take the decision for him as it is for an adult who lacks that capacity.
The gold standard, by which most of these decisions are reached, is an assessment of his best interests. The first provision in the Children Act is that the child's welfare shall be the court's paramount consideration. Parliament's provision reflects international instruments, particularly the UN Convention on the Rights of the Child. And in the Human Rights Convention, the rights of a child under article 8 will, if inconsistent with the rights of his parents, prevail over them.
But Parliament has provided that in care proceedings there should be an initial hurdle, namely the establishment of significant harm or its likelihood, attributable to the parents, before an assessment of the child's best interests can be reached. For in such proceedings a powerful extra objective is in play, namely to avoid social engineering. These are proceedings by the state to remove a child from his parents. Families need protection from too ready a removal of him. It might be arguable that a child growing up in many households today would be better off elsewhere. But Parliament has provided that that should not be a strong enough reason for removing him. Significant harm must be established.
The present proceedings are quite different; and the gold standard needs to apply to them without qualification. Doctors need to know what the law requires of them. The founding rule is that it is not lawful for them (or any other medical team) to give treatment to Alfie which is not in his interests. A decision that, although not in his best interests, Alfie's continued ventilation can lawfully continue because (perhaps) it is not causing him significant harm would be inconsistent with the founding rule.
We are satisfied that the current law of England and Wales is that decisions about the medical treatment of children, like those about the medical treatment of adults, are governed by what is in their best interests. We are also satisfied that this does not discriminate against the parents of children such as Alfie in the enjoyment of their right to respect for their family life because their situation is not comparable with that of the parents of children who are taken away from them by the state to be brought up elsewhere.

The question of whether a "significant harm" test should govern proceedings of this type was considered by the Court of Appeal and thereafter by the Supreme Court in its permission to appeal judgment, and finally in Strasbourg, in the well-known Charlie Gard case.
Baroness Hale it might thought had laid such a proposition to rest. She said In the matter of Charlie Gard, 8 June 2017:
"4. The legal test which he applied was whether further treatment would be in Charlie's best interests and in his order he expressly found that it would not be."

5. The parents argue that this is not the right legal test. In this sort of case the hospital can only interfere in the decision taken by the parents if the child is otherwise likely to suffer significant harm. But that apart, it is argued, decisions taken by parents who agree with one another are non-justiciable. Parents and parents alone are the judges of their child's best interests. Any other approach would be an unjustifiable interference with their status as parents and their rights under Article 8 of the European Convention on Human Rights. But there are several answers to this argument.

6. Firstly, applications such as this are provided for by statute: the Children Act of 1989. There was an application for a specific issue order in this case, as well as under the inherent jurisdiction of the High Court. Both are governed by the same principles. Section 1, sub-section 1 of the Children Act 1989 provides that the welfare of the child shall be the paramount consideration in any question concerning the upbringing of the child in any proceedings. This provision reflects but is stronger than Article 3.1 of the United Nations Convention on the Rights of the Child, which says that in any official action concerning the child, the child's best interests shall be a primary consideration.

7. Furthermore, where there is a significant dispute about a child's best interests the child himself must have an independent voice in that dispute. It cannot be left to the parents alone. This has happened in this case because Charlie has been represented by a guardian.

8. The guardian has investigated the case in his best interests and the guardian agrees with the hospital and with the judge's decision.

9. So, parents are not entitled to insist upon treatment by anyone which is not in their child's best interests. Furthermore, although a child can only be compulsorily removed from home if he is likely to suffer significant harm, the significant harm requirement does not apply to hospitals asking for guidance as to what treatment is and is not in the best interests of their patients. As the Court of Appeal found, it is in any event likely that Charlie will suffer significant harm if his present suffering is prolonged without any realistic prospect of improvement. This was found by reference to the judge's conclusions on the evidence.

10. Finally, the European Court of Human Rights has firmly stated that in any judicial decision where the rights under Article 8 of the parents and the child are at stake, the child's rights must be the paramount consideration. If there is any conflict between them the child's interests must prevail."

The Evans appeal judgement also discusses the relevance of the Act (Act sections 8 and 31) in the appellants' putative jurisdictional comparison between care provisions ("significant harm") and inherent jurisdiction ("best interests"). That's a little more technical matter and largely isn't relevant to what interests the thread except as reinforcement.

Spoiler Alert, click show to read: 

Significant for the purpose of this present matter is that it is common ground that an NHS Trust can (with leave) seek a specific issue order under section 8 in a serious medical treatment case, as an alternative or more usually and preferably in parallel with an application under the inherent jurisdiction.

Whether the dispute is with the third party without parental responsibility or the child's other parent with parental responsibility, the test is the same: "what is in the best interests of the child?" There is no threshold, whether of significant harm or otherwise.

During the course of section 8 proceedings it may become apparent to the court that additional factors are in play which are of more concern than the inevitable distress to a child upon family breakdown or in a medical treatment case, to the understandable chasm which has opened up between clinicians and parents unable to agree a way forward. The Children Act 1989 provides for just such an eventuality through section 37 Children Act 1989:
"37(1) Where, in any family proceedings in which a question arises with respect to the welfare of any child, it appears to the court that it may be appropriate for a care or supervision order to be made with respect to him, the court may direct the appropriate authority to undertake an investigation of the child's circumstances."

It follows, therefore, that where an application is made for a specific issue order under section 8 CA 1989, care proceedings - with the threshold of significant harm - provide the court with an additional avenue of intervention, only resorted to when there are concerns in respect of the child in question over and above the inherent difficulties which arise by virtue of the issue before the court.
[...]
As in section 8 cases, there is no threshold, and it is not necessary for a trust to prove significant harm before a court can make an order which would have the effect of interfering with the exercise of parental responsibility on the part of the parents. Decisions are made only on the basis of the best interests of the child.
[...]
In my view, parents in care proceedings are not in an "analogous or relevantly similar situation" to those in medical "best interests" cases under inherent jurisdiction proceedings.

Some of the closing points from the Appeal judgement, bearing on parental responsibility and abridgement thereof, and the relevance of the child's condition:

Spoiler Alert, click show to read: 

Following this argument through, McCombe LJ in argument put it to Mr Knafler and to Mr Mylonas that it follows that in withdrawal of medical treatment cases just as much as in care proceedings, the court will not intervene to interfere with the exercise of the parents' parental responsibility absent the child's suffering or being likely to suffer significant harm. If attribution of that harm to the parents has been necessary it is to be found in their refusal to consent to the palliative care regime proposed by the Trust.

It will be recollected that in Gard Baroness Hale said,
"As the Court of Appeal found, it is in any event likely that Charlie will suffer significant harm if his present suffering is prolonged without any realistic prospect of improvement"

That finding had been made on the basis of very similar findings in relation to the issue of pain, as in the present case, namely that whilst it was unlikely that Charlie, or here Alfie, is suffering pain it cannot be ruled out.

[...]the proceedings under the inherent jurisdiction have in my view an objective and reasonable justification and pursue a legitimate aim, namely the care and treatment of desperately ill children.

Again it was not argued before the court but, notwithstanding Mr Mylonas' circumspection, it seems to me that there may be a respectable argument that when it comes down to significant harm in the context put by McCombe LJ to Mr Mylonas when put side by side with "futile" may in this context be different labels but without distinction.

Mr Knafler was frank in accepting that a consequence of his approach would be that where a parent did not agree with the hospital's treatment plan, even where the plan had been endorsed by their own independent experts, the parents could insist on what Mr Knafler has termed "suboptimal" care. In other words, the best interests of the seriously ill child must, he says, take a secondary position to the wishes and feelings of their parents absent attributable significant harm. With respect to Mr Knafler, not only does such an approach feel instinctively wrong, but it must be recollected that not only do the parents have rights, but so does the child, Alfie, and European law has been consistent in saying that the best interests of a child, whether seriously ill or not, must take primacy.

It follows that the State has a wide margin of appreciation as to how the withdrawal of life-sustaining treatment is managed, unaffected by the fact that other states, in this case Professor Hass asserting such an approach is taken in Germany, may have very different approaches or views as to how and if treatment should be withdrawn, and if so in what circumstances. In the United Kingdom such cases are managed within the hospitals in accordance with guidelines, which guidelines operate under the law which states that the best interests of the child are the determining factor. In the event that there is disagreement the matter is referred to the court, where both the parents and the child are parties to the proceedings.

From the Alfie Evans High Court judgement:

Spoiler Alert, click show to read: 

It is necessary here to root my own conclusions in the framework of the Law and
within the available guidance. The Royal College of Paediatrics and Child Health
has produced guidance, published March 2015: Making Decisions to Limit
Treatment in Life-limiting and Life- threatening Conditions in Children: A
Framework for Practice’. The following is relevant:

The RCPCH believes that there are three sets of circumstances when
treatment limitation can be considered because it is no longer in the
child's best interests to continue, because treatments cannot provide
overall benefit:
II When life is limited in quality This includes situations where
treatment may be able to prolong life significantly but will not
alleviate the burdens associated with illness or treatment itself. These
comprise:
3 .Lack of ability to benefit; the severity of the child's condition is
such that it is difficult or impossible for them to derive benefit from
continued life.....In other children the nature and severity of the
child's underlying condition may make it difficult or impossible for
them to enjoy the benefits that continued life brings. Examples
include children in Persistent Vegetative State (PVS), Minimally
Conscious State, or those with such severe cognitive impairment that
they lack demonstrable or recorded awareness of themselves or their
surroundings and have no meaningful interaction with them, as
determined by rigorous and prolonged observations. Even in the
absence of demonstrable pain or suffering, continuation of LST may
not be in their best interests because it cannot provide overall benefit
to them. Individuals and families may differ in their perception of
benefit to the child and some may view even severely limited
awareness in a child as sufficient grounds to continue LST. It is
important, here as elsewhere, that due account of parental views
wishes and preferences is taken and due regard given to the acute
clinical situation in the context of the child's overall situation.

Contra Fisherking's impression, the key factors in the doctors' and judges' reasoning were "combination of the futility of Alfie’s life (i.e. the absence of any prospect of recovery) and the uncertainty of knowing whether Alfie is suffering." And I would recommend he read at least the February judgement linked above; he may be surprised at how generous and empathetic the judge is.

In subsection "The Directions Hearing", referring to litigation of late 2017, the judge remarks that the father seemed to be acting in such a way as to delay the case and "buy time for his son". (Just in case someone complains the courts are too ponderous an instrument.) Also noted in the appeal judgement:

The father (and no doubt the mother) is anxious to have adequate time to understand, consider and contribute to any end of life plan for Alfie. The Trust has indicated that they are happy to respect the father's wishes in this regard and will not, following the dismissal of any appeal, act with unseemly haste. The Trust gave the court that assurance against their continuing concern that this desperate father will do anything to put off the day when ventilation will be withdrawn. Clearly if no compromise or agreement can be reached, the matter will have to be returned to the judge for him to hear argument and to fix a date.

And it goes on into fact-specific considerations, as well as the case made by the parents and the alternative medical opinions for moving Alfie (alleged lack of medical justification against moving), and even the Catholic doctrine supporting "due proportion in the use of remedies" (re: the discontinuation or withholding of "overzealous" therapies). But the basic idea of all this is that life under total disability shouldn't be aggressively extended. Allowing repeated movement of the patient to different countries and hospitals just to continue the same sort of intensive, and then palliative care would be an example of the proscribed aggressive intervention.

The judge's conclusions:

Spoiler Alert, click show to read: 

60. Whilst I have, for the reasons stated, rejected the evidence of Dr Hubner, I do not
exclude the possibility that travel by Air Ambulance may remain a theoretical
option. It requires to be considered however in the context of the matters above and
one further important consideration. All agree that it is unsafe to discount the
possibility that Alfie continues to experience pain, particularly surrounding his
convulsions. The evidence points to this being unlikely but certainly, it can not be
excluded.

61. Alongside all this it must be remembered that Alfie can not sustain life on his own.
It is the ventilator that has been keeping him alive for many months, he is unable to
sustain his own respiratory effort.

62. All this drives me reluctantly and sadly to one clear conclusion. Properly analysed,
Alfie’s need now is for good quality palliative care. By this I mean care which will
keep him as comfortable as possible at the last stage of his life. He requires peace,
quiet and privacy in order that he may conclude his life, as he has lived it, with
dignity.

63. The plans to take him to Italy have to be evaluated against this analysis of his needs.
There are obvious challenges. Away from the intensive care provided by Alder Hey
PICU, Alfie is inevitably more vulnerable, not least to infection. The maintenance
of his anticonvulsant regime, which is, in itself, of limited effect, risks being
compromised in travel. The journey, self-evidently will be burdensome. Nobody
would wish Alfie to die in transit.

64. All of this might be worth risking if there were any prospect of treatment, there is
none. For this reason the alternative advanced by the father is irreconcilable with
Alfie’s best interests. F continues to struggle to accept that it is palliation not
treatment that is all that can now be offered to his son

A decision to suspend further intensive treatment should thus be internally supported - and it isn't logical to reject one course of action, but then to remand the subject into the same thing but elsewhere. I'm not sure if the option to withdraw patient into home care is addressed, though I'm not clear here how the parents prioritized this option. I can't figure out, for example, whether the parents wanted to visit the Italian or German hospital just in order that Alfie could be prepped for palliative home-care, and if so why this could not be accomplished without transiting hospitals (i.e. locally). Also keep in mind that under any case of home-care, the parents wanted Alfie subjected to major surgical procedures (tracheotomy and gastrostomy). There's no indication that the parents simply argued, 'We want to take Alfie home now'. So the issue remains abstract.

F presses for Alfie to be permitted to travel to the BG hospital (Rome) and
provided with a tracheostomy and PEG feeding. He argues, if that proffers no
solution, there should be a further transfer to the Munich hospital. If that too fails F
says that Alfie should be allowed home to die “when he decides to”.

Finally, it's an interesting fact that the NHS Trust itself paid for the various outside specialists to assess Alfie, advise the parents, and advocate the parents' case before the caretakers and before the courts.

In addition the Trust paid for outside expert mediators to work with the parents and themselves. It did this because the doctors and nurses caring for Alfie, in common with all clinicians in such a situation, aspire to work together with the parents and to support them rather than to be in conflict with them.

Altogether, my impression is that the system has worked fairly well and the decision-making has all been within the text of the law. Why shouldn't this instill some pride our British members?

British law as I reference it here requires the state, incidentally or otherwise, to make an assessment of best interests and to act upon it - or take it into consideration in the course of action. This was done in both the Gard and Evans cases, and the reasoning isn't inconsistent (though I hope you will forgive me for not giving the Gard judgements a thorough summary). If you want to continue in the abstract rather than the particular, you will probably attempt to argue that you don't want the state determining what a citizen's "best interests" are...


( @Husar: The German Dr. Haas, and considerations around his advisements and testimony in this case, suggest to me that the German healthcare system is likely to act in a way that maintains the child or disabled patient on life support indefinitely:

Because of our history in Germany, we've learned that there are some things you just don't do with severely handicapped children. A society must be prepared to look after these severely handicapped children and not decide that life support has to be withdrawn against the will of the parents if there is uncertainty of the feelings of the child, as in this case

Respond?

)