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KenV
26th Apr 2018, 18:15
For all the folks on the other side of the pond who regularly post about how "sick" American culture and society is because we view gun ownership as a civil right, please explain how the UK government's, UK medical system's, and UK court's treatment of Alfie Evans is indicative of a much more "civilized", and "enlightened" society. Give us your best shot.

BehindBlueEyes
26th Apr 2018, 18:56
If you look at the whole desperately sad situation dispassionately, it seems as though the poor little lad hasn’t got any quality of life so it would be kinder just to let him go.

However, as a parent, if Alfie was my child, I would cling to absolutely any hope, no matter how small. Despite what the doctors said, switching off his life support hasn’t yet been the final stage and just sometimes, the medics are wrong. What puzzles me particularly though is, even if the NHS do not wish to offer any further treatment, why are his parents forbidden to take him to Italy? Surely, unless I’m missing something or misunderstood, that is their right?

This case reminds me of a similar one two years ago with a UK child suffering from an inoperable brain cancer. His parents, against the court and hospital wishes, removed him from medical care and went overseas to try an alternative treatment. If I understand it, this child has been reported as if not cured, certainly in remission.

meadowrun
26th Apr 2018, 18:56
Don't know Alfie.
It's not about gun ownership as a civil right.
It's about those who should not have that right and the pure ease they have getting them regardless. "Those who should not" - that should be self-explanatory.

ORAC
26th Apr 2018, 19:09
Exactly the same Anglo-Saxon common law system which, in the USA, allows the courts to overrule the rights of the parent in the best interest a child - as recommended by the attending physicians - as, for example, in the case of a child needing a blood transfusion whose parents are Jehovah Witnesses.....

Lascaille
26th Apr 2018, 19:10
why are his parents forbidden to take him to Italy?

Because the last time that happened the child recovered and proved the NHS experts wrong. The 'proton therapy' case, I think it was?

Smeagol
26th Apr 2018, 19:28
Because the last time that happened the child recovered and proved the NHS experts wrong. The 'proton therapy' case, I think it was?
I rather think that the case you quote was a completely different scenario. That child had a brain tumour which was possibly treatable, which has proven to be so fortunately for all concerned. And long may it last.
The unfortunate Alfie is in situation which all the doctors everywhere (as I understand it) agree is untreatable. The only difference is that a hospital in Italy has offered to prolong the use of life support systems which is keeping the boy alive. There is agreement that there is zero chance of recovery.

G-CPTN
26th Apr 2018, 19:31
Assuming that Alfie is transported to Italy, who will pay the medical fees?
Will the E111 work?

ORAC
26th Apr 2018, 19:44
In all such cases, on both sides of the Atlantic, the court is left to decide in the best interest of the child. And every single case is different - and no general rule can apply. For every case you might cite where the clinical judgement was wrong there will be thousands where the clinical judgement was right.

It is is bad enough when the parents are being exploited by a fundamentalist Christian organisation to push their agenda. Far, far, worse is an attempt from someone I feel deep disgust for to exploit the case for purely political gain on an unimportant website concerning gun control.

Do you have no sense of self respect whatsoever?

cdtaylor_nats
26th Apr 2018, 20:39
I think Americans get confused on this subject - they can't understand why the child is allowed to die before the parents have used up all of their money.

RedhillPhil
26th Apr 2018, 21:06
Sentimentality will always win over medical facts. If given an enormous amount of expensive treatment (who's paying?) the lad may continue to live but with what quality of life? The whole sorry saga is turning into a circus.

M.Mouse
26th Apr 2018, 21:23
....please explain how the UK government's, UK medical system's, and UK court's treatment of Alfie Evans is indicative of a much more "civilized", and "enlightened" society.

How about the fact the treatment the little lad has had and is having is entirely funded by taxpayers. Unlike the American system it hasn't bankrupted the parents.

Unfortunately emotion overules common sense in cases like this. From what I have read the little lad has virtually zero brain function and never will have. I feel desparately sad for the parents but what are they actually trying to achieve?

FakePilot
26th Apr 2018, 21:27
I had no opinion on this, on one side the parents love and the other the almost certain medical facts. But the royals/politicians wouldn't have this problem if it was their child. That's what gets me seething.

Pontius Navigator
26th Apr 2018, 21:40
. . . the royals/politicians wouldn't have this problem if it was their child. . .
now that is fake news. The previous Prime Minister lost his son which disproves party of your assertion. A Royal was previously kept locked up . . .

Certainly the Royals get the best private treatment but not to the point of miracles.

annakm
26th Apr 2018, 22:08
I think it’s highly unlikely in this case that there has been a misdiagnosis or sadly any chance of a miracle. No doubt Alphie has had brain scans and been wired for any cerebral activity. If, as reported, this is a degenerative condition, there’s even less likelihood of a recovery. The very rare miraculous recoveries you occasionally get to hear of are usually following an injury where the body has had be able to repair itself over a period of time. This case seems to be an unknown progressive affliction that is destroying the brain from within.

It should be a very private and valued time for the parents. I don’t know whose idea it was to bring the media in and to hear that some misguided individuals and zealots are intimidating other parents, patients and staff at the hospital is beyond belief. Some of those families on the receiving end may be going through their own distressing issues and do not need the stress of running the gauntlet of a braying mob.

treadigraph
26th Apr 2018, 23:34
Although I wouldn't normally post a Guardian link, the author of this article presents the case for letting the poor little boy fade away far more eloquently than I could and certainly from a position of far greater knowledge.

https://www.theguardian.com/commentisfree/2018/apr/26/nhs-palliative-care-alfie-evans-die-with-dignity

Tankertrashnav
26th Apr 2018, 23:46
I'm not sure how old Alfie's mother is but his father is only 23 and these young parents are in this awful position with no possible good result in sight. I think what has happened to them, being taken over by some pretty awful people with their own agenda to push is just terrible. Seems like they are now coming around to some sort of acceptance of the hopeless situation and yesterday thanked hospital staff for help they are receiving in getting Alfie home to die with some sort of dignity. This is in stark contrast to some of the vile things that have been posted on social media about the medical staff,who only ever wanted to do what was best for the child.

Buswinker
26th Apr 2018, 23:49
This case reminds me of a similar one two years ago with a UK child suffering from an inoperable brain cancer. His parents, against the court and hospital wishes, removed him from medical care and went overseas to try an alternative treatment. If I understand it, this child has been reported as if not cured, certainly in remission.

Don’t mean to be the one to break this to you but Ashya King was absolutely not suffering from an inoperable brain tumour- he had been operated on and the tumour removed. The point of disagreement was which form of radiotherapy to use to prevent a recurrence.

the nhs is happy to pay for proton therapy (patients usually treated either in the US or Switzerland until the UK proton therapy centre comes online), however there was (and still is) no good evidence that proton therapy is effective as a prevention for recurrence/metastasis of medulloblastoma (n=1 does not equal proof)

I agree it wasn’t handled desperately well by either side and I feel there was a degree of miscommunication leading to the parents feeling they had no option but to abscond from the hospital with child but...

that being a totally different case to either Alfie or Charlie Gard. The court of protection in these situations is not appointed to allow the doctors/parents to do anything in particular. A public guardian is appointed to advocate for the child (or other person not able to speak for themselves) so that decisions can be made in the best interests of the patient- not the doctors, not the nhs, not the parents.

this is (in my opinion) a fantastic system that prevents someone unable to speak for themselves either being subjected to potentially painful and undignified treatment that has minimal chance of working in any meaningful sense of the word; it also prevents doctors withdrawing treatment prematurely

the charlotte Wyatt case is so often forgotten about in these debates- that was a prime case where the decision was made against the hospital withdrawing life support. Charlotte is, I believe, still alive, although I also believe her parents split up and she is now cared for by a foster family?

Highway1
27th Apr 2018, 00:22
The NHS is always pleading poverty yet is quite willing to spend money on lawyers at the High Court and to have this kid bed-blocking an intensive care unit. If the family want to take him to Italy and the Italians are willing to treat the lad why on earth is the NHS trying to prevent them.

Krystal n chips
27th Apr 2018, 04:15
For all the folks on the other side of the pond who regularly post about how "sick" American culture and society is because we view gun ownership as a civil right, please explain how the UK government's, UK medical system's, and UK court's treatment of Alfie Evans is indicative of a much more "civilized", and "enlightened" society. Give us your best shot.

This article should offer you an insight as to how matters have developed.

https://www.theguardian.com/commentisfree/2018/apr/26/alfie-evans-parents-activists

See if you can spot the mention of the basis of your query.

Buswinker
27th Apr 2018, 06:21
The NHS is always pleading poverty yet is quite willing to spend money on lawyers at the High Court and to have this kid bed-blocking an intensive care unit. If the family want to take him to Italy and the Italians are willing to treat the lad why on earth is the NHS trying to prevent them.

1) the NHS legal budget is a ringfenced fund which should probably be thought of more as insurance than actual free money per se

2) the whole point is that taking the child to Italy for ongoing ventilation etc with no hope of a cure, is not in his best interests. So decides an independent judiciary which is tasked to advocate for Alfie. That is the point.

This has got absolutely zero to do with what his parents want, or what his doctors want

eal401
27th Apr 2018, 07:31
I had no opinion on this, on one side the parents love and the other the almost certain medical facts. But the royals/politicians wouldn't have this problem if it was their child. That's what gets me seething.

If you have "no opinion" on it, why did you present the utterly retarded, ill-educated opinion in your middle sentence? Did you forget that David Cameron's disabled son died and only ever had NHS care.

Stick on your own side of the pond until you develop brain cells numbering double figures.

Nemrytter
27th Apr 2018, 07:38
For all the folks on the other side of the pond who regularly post about how "sick" American culture and society is because we view gun ownership as a civil right, please explain how the UK government's, UK medical system's, and UK court's treatment of Alfie Evans is indicative of a much more "civilized", and "enlightened" society. Give us your best shot.Because the caregivers in the UK listen (at least in this case) to experts and doctors rather than to mobs outside hospitals, the media and religious nuts.

VP959
27th Apr 2018, 07:49
Isn't this really an impossible debate?

Parents are going to grasp at any straw if they believe that it may prolong the life of their child. That makes it near-impossible for them to make any sort of rational judgement, especially when the medical facts are complex and beyond the ability of many to grasp.

Doctors here try to act in the best interest of their patient, and sadly, that may mean that they have to try and persuade parents that the condition of their child is so poor that no amount of medical intervention can save the child's life. That is the case here - no doctor anywhere is saying that this child's life can be saved - no matter where in the world he is taken.

Sadly, in this case, the relationship between the caring parents and the equally caring medical team has broken down. I think most can understand how this can happen - it's not at all uncommon for people to believe that a miracle can happen, and that the doctors are wrong, but as medical science improves, sadly so does the ability of that same medical science to become certain of the outcome in more and more cases.

In this particular case we also have interference in the process by a fundamentalist pro-life group who have given the parents false hope. One can question why they have done this; my own view is a bit cynical, they wish to raise the profile of their own fundamentalist views, and are using the susceptibility of the child's parents to do this.

I'm glad we have a specific legal process to intervene and make these very difficult decisions. It's not perfect, and it would have been far, far, better if the rift between the parents and the medical team caring for their child had never developed. However, people don't always react rationally when faced with such a tragic event, and I don't think anyone can blame the parents for not being able to face the inevitable, that there child is going to die, and it's just a matter of where and when, not if.

ShotOne
27th Apr 2018, 08:16
Ken, if I was American, the constant braying of foreigners telling me what US gun laws should be would get right up my nose. Irrespective of my stance on the issue. But your linking this to the Alfie's tragic situation is poor form and doesn't help your case. Sadly, medically experts are in full agreement there is no cure. Also, the legal framework which has guided those medics is very similar both sides of the Atlantic. But this hasn't stopped various groups riding on his back; religious fundamentalists, Liverpudlian rentamob...and yourself.

BehindBlueEyes
27th Apr 2018, 09:15
Isn't this really an impossible debate?

Parents are going to grasp at any straw if they believe that it may prolong the life of their child. That makes it near-impossible for them to make any sort of rational judgement, especially when the medical facts are complex and beyond the ability of many to grasp.

Doctors here try to act in the best interest of their patient, and sadly, that may mean that they have to try and persuade parents that the condition of their child is so poor that no amount of medical intervention can save the child's life. That is the case here - no doctor anywhere is saying that this child's life can be saved - no matter where in the world he is taken.

Sadly, in this case, the relationship between the caring parents and the equally caring medical team has broken down. I think most can understand how this can happen - it's not at all uncommon for people to believe that a miracle can happen, and that the doctors are wrong, but as medical science improves, sadly so does the ability of that same medical science to become certain of the outcome in more and more cases.

In this particular case we also have interference in the process by a fundamentalist pro-life group who have given the parents false hope. One can question why they have done this; my own view is a bit cynical, they wish to raise the profile of their own fundamentalist views, and are using the susceptibility of the child's parents to do this.

I'm glad we have a specific legal process to intervene and make these very difficult decisions. It's not perfect, and it would have been far, far, better if the rift between the parents and the medical team caring for their child had never developed. However, people don't always react rationally when faced with such a tragic event, and I don't think anyone can blame the parents for not being able to face the inevitable, that there child is going to die, and it's just a matter of where and when, not if.

A very eloquent and well considered post; you’ve summed the whole sad situation perfectly V959 - thank you.

Very regrettable that a family tragedy has been hijacked by fundamentalists who have their own agenda.

Like others on here, I don’t see the correlation between this and gun control - apart from one extremist group trying to save a life and the NRA trying to keep the right to take one.

Tankertrashnav
27th Apr 2018, 09:39
Thanks for that link, K&C, an excellent Guardian article (did I really just say that?!). The comments by the judge really hammer those who have turned this tragic situation into a media circus.

Highway1
27th Apr 2018, 12:15
2) the whole point is that taking the child to Italy for ongoing ventilation etc with no hope of a cure, is not in his best interests. So decides an independent judiciary which is tasked to advocate for Alfie. That is the point.

This has got absolutely zero to do with what his parents want, or what his doctors want

Well it has - the Court action is based on what the UK Doctors feel is best - however the Italian doctors do not agree. This being the case what would be lost by allowing the kid to be moved to Italy so that their doctors can try something else and the NHS can then spend the money on treating someone else.

sitigeltfel
27th Apr 2018, 12:25
Well it has - the Court action is based on what the UK Doctors feel is best - however the Italian doctors do not agree. This being the case what would be lost by allowing the kid to be moved to Italy so that their doctors can try something else and the NHS can then spend the money on treating someone else.

The Italian doctors can get him a new brain?

Let us know how that goes!

G-CPTN
27th Apr 2018, 12:27
Given the need for a miracle, would it not be better to take the child to Lourdes rather than Italy? - or does the Pope control the miracles?

Highway1
27th Apr 2018, 13:10
The Italian doctors can get him a new brain?

Let us know how that goes!

What exactly have you got against Italian doctors trying other forms of treatment - worried that the NHS might get shown up?

VP959
27th Apr 2018, 14:02
What exactly have you got against Italian doctors trying other forms of treatment - worried that the NHS might get shown up?

All the medical opinions were agreed, that this poor child's degenerative brain condition had advanced to the point where the damage to his brain is too severe to be reversible. It has been described as being "catastrophic degradation of his brain tissue".

Three medical experts from the Vatican-linked Bambino Gesu Paediatric Hospital in Rome visited Alfie in Alder Hey at the request of his parents. They had reached the same conclusions in terms of the "complete futility" of trying to find a cure or alleviating his seizures. The Italian experts had suggested operations to help Alfie breathe and feed and keep him alive for an "undefined period".

In other words, there was no hope of any cure from the Italian medical team, just a prolonged period of end-of-life care.

Crownstay01
27th Apr 2018, 14:09
What exactly have you got against Italian doctors trying other forms of treatment...

The Italian doctors aren't offering other forms of treatment. There is no treatment available for this poor little boy.

Highway1
27th Apr 2018, 14:18
All the medical opinions were agreed, that this poor child's degenerative brain condition had advanced to the point where the damage to his brain is too severe to be reversible. It has been described as being "catastrophic degradation of his brain tissue".

Three medical experts from the Vatican-linked Bambino Gesu Paediatric Hospital in Rome visited Alfie in Alder Hey at the request of his parents. They had reached the same conclusions in terms of the "complete futility" of trying to find a cure or alleviating his seizures. The Italian experts had suggested operations to help Alfie breathe and feed and keep him alive for an "undefined period".

In other words, there was no hope of any cure from the Italian medical team, just a prolonged period of end-of-life care.

Well the NHS has now ceased life support and deprived him of food and water - yet the kid is still alive. So wouldn't it be better to allow the Italians to give him a better quality of life?

This is Italy we are talking about - not some mud hut in the Congo with a resident witch doctor. if they feel they can help in some way and the NHS doesn't want to do any more then why should the kid be banned from receiving care.

VP959
27th Apr 2018, 14:39
Well the NHS has now ceased life support and deprived him of food and water - yet the kid is still alive. So wouldn't it be better to allow the Italians to give him a better quality of life?

This is Italy we are talking about - not some mud hut in the Congo with a resident witch doctor. if they feel they can help in some way and the NHS doesn't want to do any more then why should the kid be banned from receiving care.

The Italian medical team were not promising that they could give him a "better quality of life" at all.

All they were offering was surgery that would assist his breathing, but would do nothing to reduce the degenerative brain condition. All surgery carries a risk, too, although I have no idea as to how significant a risk their proposed surgery was. All that has been reported is that, despite his severely degenerative brain condition, the operation may make it easier for him to breathe, perhaps without a ventilator. In effect, the were offering a way to allow him to take longer to die. The Italian medical team agreed with the Alder Hey team that this poor child has virtually no higher brain functions left. Apparently he cannot even respond to stimuli. The parents claim he can, but every medical professional has agreed that his movements are caused by seizures.

And to correct an error that repeatedly crops up in this thread, this was not an NHS decision at all, it was a decision reached jointly by every doctor that has examined him, including the Italian team that came over especially to see him.

The decision that it was not in the best interests of the child to move him to the Italian clinic for treatment was made by the court, not the NHS.

ORAC
27th Apr 2018, 15:07
Highway1.

Incorrect, he is receiving both food, water and oxygen.

Where red do you get your information? Or are you making it up to to support some other agenda?

That information came from his father by the way......

https://www.express.co.uk/news/uk/951105/alfie-evans-health-update-tom-evans-alder-hey-italy-food

galaxy flyer
27th Apr 2018, 15:13
The problem is “who rations the scarce commodity called medical care.” Do you choose lawyers (courts), bureaucrats (social programs) or what your own finances can provide (cash or thru insurance cover abiding their standards)?

GF

VP959
27th Apr 2018, 15:51
The problem is “who rations the scarce commodity called medical care.” Do you choose lawyers (courts), bureaucrats (social programs) or what your own finances can provide (cash or thru insurance cover abiding their standards)?

GF

It's not even really about medical care, though, every doctor that has seen him, including the doctors from Italy, are in agreement. He cannot be cured, he is dying, and all medicine can do is make his passing as dignified and pain-free as possible.

It wouldn't matter if someone threw hundreds of millions of pounds into flying him to the very best, most expensive, treatment facilities in the world, the sad fact is that he is still going to die. I can understand the parents wanting there to be a miracle, and perhaps their faith, encouraged by the religious group that is supporting them, believes that a miracle can happen, given time. Perhaps one can - who knows. All that we know is that every doctor that has looked at his brain scans, not just doctors in the UK, or working within our NHS, are in agreement - his brain has degenerated to the point of no return, and continues to degenerate further with every passing hour, no matter what they try to do to arrest it.

Highway1
27th Apr 2018, 15:54
Highway1.

Incorrect, he is receiving both food, water and oxygen.

Where red do you get your information? Or are you making it up to to support some other agenda?

That information came from his father by the way......


Well it was his father who claimed he wasnt receiving food, water and oxygen

Mr Evans continued: 'They say Alfie's suffering. Well look at him now. He's not even on a ventilator and he's not suffering.'

Asked what intervention doctors had made, he replied: 'They left him for six hours without food, water and oxygen.

'I felt blessed when they confirmed they were going to give him his water and his oxygen.


Toddler Alfie Evans survives another night without life support | Daily Mail Online (http://www.dailymail.co.uk/news/article-5654559/Toddler-Alfie-Evans-survives-night-without-life-support.html)

Lascaille
27th Apr 2018, 18:33
It's not even really about medical care, though, every doctor that has seen him, including the doctors from Italy, are in agreement. He cannot be cured, he is dying, and all medicine can do is make his passing as dignified and pain-free as possible.

It wouldn't matter if someone threw hundreds of millions of pounds into flying him to the very best, most expensive, treatment facilities in the world, the sad fact is that he is still going to die. I can understand the parents wanting there to be a miracle, and perhaps their faith, encouraged by the religious group that is supporting them, believes that a miracle can happen, given time. Perhaps one can - who knows. All that we know is that every doctor that has looked at his brain scans, not just doctors in the UK, or working within our NHS, are in agreement - his brain has degenerated to the point of no return, and continues to degenerate further with every passing hour, no matter what they try to do to arrest it.

So as all are in agreement that there is no brain function there can be no suffering, can there? So why the restriction if Italy wish to waste their money providing healthcare? Where is the consideration of the mental health of the parents?

insty66
27th Apr 2018, 18:45
For all the folks on the other side of the pond who regularly post about how "sick" American culture and society is because we view gun ownership as a civil right, please explain how the UK government's, UK medical system's, and UK court's treatment of Alfie Evans is indicative of a much more "civilized", and "enlightened" society. Give us your best shot.
As a sort of point of order, the Government had nothing to do with this.

The UK has:
Executive (government)
Legislative (Parliament)
Judiciary (courts)

All are constitutionally independent of one and other. The decision was made within the courts as has been explained earlier in this thread.

hiflymk3
27th Apr 2018, 20:20
I know a retired theatre nurse who worked at Great Ormond Street childrens hospital. She told me that these life and death decisions are made by the surgeons on a regular basis. Can anyone here imagine having to make those choices in their professional life. I sympathise with the Evans family, what parent would not cling to hope, but the inevitable will happen. Who knows what suffering that child is having. Let him go in peace and dignity and rest his soul.

FakePilot
27th Apr 2018, 20:35
If you have "no opinion" on it, why did you present the utterly retarded, ill-educated opinion in your middle sentence? Did you forget that David Cameron's disabled son died and only ever had NHS care.

Stick on your own side of the pond until you develop brain cells numbering double figures.

Ok, I am in the double digit brain cell club! Ten exactly, if you round up. David Cameron wasn't told the plug had to be pulled. Your argument would make sense if the NHS told Cameron, sorry, we have to do this, and no, you can't take him anywhere. That's not what happened. I don't think that some secret miracle cure was withheld, I'm just saying the the NHS wouldn't go up to a powerful figure and tell them the plug had to be pulled.

And I have to stay on my side of the pond? Look at all these muddy footprints over here!

Captivep
27th Apr 2018, 21:27
Ok, I am in the double digit brain cell club! Ten exactly, if you round up. David Cameron wasn't told the plug had to be pulled. Your argument would make sense if the NHS told Cameron, sorry, we have to do this, and no, you can't take him anywhere. That's not what happened. I don't think that some secret miracle cure was withheld, I'm just saying the the NHS wouldn't go up to a powerful figure and tell them the plug had to be pulled.

And I have to stay on my side of the pond? Look at all these muddy footprints over here!

I really don't understand why you think someone "powerful" wouldn't be told that their child had virtually no brain matter left and that the kindest thing to do would be to let them go. What on earth would be the point?

FakePilot
28th Apr 2018, 00:41
I really don't understand why you think someone "powerful" wouldn't be told that their child had virtually no brain matter left and that the kindest thing to do would be to let them go. What on earth would be the point?

Well I can see why your political career or appointment didn't get far. :) Is joke Ok? (thick Russian accent)
Sorry but it's always safe to assume people will operate in their own best interest, especially people who seek power. Even if their own self interest isn't "rational". Whatever rational means.

Toadstool
28th Apr 2018, 06:06
Legal battle toddler Alfie Evans dies - BBC News (http://www.bbc.co.uk/news/uk-43933056)

VP959
28th Apr 2018, 06:44
Your argument would make sense if the NHS told Cameron, sorry, we have to do this, and no, you can't take him anywhere.

This has absolutely nothing to do with the NHS here at all, they are outside the loop on this.

It's a difference of opinion between a medical team, who all essentially agree with each other, and the parents and their supporters from a pro-life group who disagree with the medical team's opinion.

The decisions have been made by the courts, who frankly had to act like King Solomon in trying to hear the medical opinions from all the doctors (including the ones from Italy) and the opinions from the parents and their pro-life supporters, and make a decision.

If the parents had medical insurance and were using a company like BUPA to provide their son's medical care, or even if they were just paying a medical team to treat him directly, the outcome would have been identical, the difference of opinion between the medical team and the parents and their supporters would be still be settled by the courts. Here the courts are wholly independent of government - our government doesn't appoint any judges or have any influence over the judiciary, who are apolitical.

VP959
28th Apr 2018, 06:50
Legal battle toddler Alfie Evans dies - BBC News (http://www.bbc.co.uk/news/uk-43933056)

Hopefully he died peacefully and with dignity, and his parents can come to terms with their loss.

I suspect the pro-life religious group that have been supporting them may well try and gain more publicity for their cause, though I hope they have the common decency to just accept that there are times when no amount of intervention will save a life.

DaveReidUK
28th Apr 2018, 07:01
The decisions have been made by the courts, who frankly had to act like King Solomon in trying to hear the medical opinions from all the doctors (including the ones from Italy) and the opinions from the parents and their pro-life supporters, and make a decision.

High Court judgement (20th Feb) (http://www.bailii.org/ew/cases/EWHC/Fam/2018/308.html)
Court of Appeal judgment (6th March) (http://www.bailii.org/ew/cases/EWCA/Civ/2018/550.html)
Supreme Court judgement (20th March) (https://www.supremecourt.uk/news/permission-to-appeal-determination-in-the-matter-of-alfie-evans.html)
European Court of Human Rights judgement (28th March) (https://hudoc.echr.coe.int/app/conversion/pdf?library=ECHR&id=003-6046074-7771568&filename=Decision%20Evans%20v.%20United%20Kingdom%20-%20complaint%20declared%20inadmissible.pdf)
Court of Appeal second judgement (16th April) (http://www.bailii.org/ew/cases/EWCA/Civ/2018/805.html)

VP959
28th Apr 2018, 07:07
High Court judgement (20th Feb) (http://www.bailii.org/ew/cases/EWHC/Fam/2018/308.html)
Court of Appeal judgment (6th March) (http://www.bailii.org/ew/cases/EWCA/Civ/2018/550.html)
Supreme Court judgement (20th March) (https://www.supremecourt.uk/news/permission-to-appeal-determination-in-the-matter-of-alfie-evans.html)
European Court of Human Rights judgement (28th March) (https://hudoc.echr.coe.int/app/conversion/pdf?library=ECHR&id=003-6046074-7771568&filename=Decision%20Evans%20v.%20United%20Kingdom%20-%20complaint%20declared%20inadmissible.pdf)
Court of Appeal second judgement (16th April) (http://www.bailii.org/ew/cases/EWCA/Civ/2018/805.html)

But it's worth noting that the hospital trust was the only mechanism available to represent the medical team. The central NHS itself wasn't, as far as I'm aware, involved in any legal action, just the managers of the medical team who instructed their legal people. If Alder Hey was run by one of the medical insurance companies, then it would be their name on the legal papers, but again would almost certainly not relate back to the central insurer, just the managers of that particular hospital that instructed their legal team.

For those not familiar with the way the NHS works here, it's broadly similar to the US system in a few ways, in that hospitals and other health care providers run semi-autonomously, usually as Trusts, and charge the NHS for their services. The NHS itself is vaguely equivalent to all the main health care insurers, Medicare etc, rolled into one single funding body, that buys medication, medical products etc from pharmaceutical and medical supply, companies at supposedly reduced prices (because of the volume pricing model) and also "buys" services from hospital trusts, many forms of primary healthcare providers (independently run and managed general practices, dental practices and opticians) and also private sector health care providers on occasion. Some have likened the model to "playing shopkeepers", which is a pretty close analogy, I think.

The idea is that each provider is operating within a "market" to some extent, with the objective (which I happen to think is flawed) of trying to get "competition" to drive down costs. The reality seems to be that hospital and health care trusts have become dominated by managers who seem to "game the system" at any and every opportunity, and I don't believe that the splitting off of hospitals etc from the centrally run NHS has worked to reduce costs at all.

Crownstay01
28th Apr 2018, 08:36
Hopefully he died peacefully and with dignity, and his parents can come to terms with their loss.

I suspect the pro-life religious group that have been supporting them may well try and gain more publicity for their cause, though I hope they have the common decency...

They haven't shown any so far, so I wouldn't expect them to start now.

Krystal n chips
28th Apr 2018, 08:57
My my, now there's a surprise ......

https://www.theguardian.com/uk-news/2018/apr/28/call-from-god-american-pro-lifers-role-in-alfie-evans-battle



The OP has been strangely silent of late on this topic.....possibly he may care to comment on the above, and previous, link from the Guardian.

tescoapp
28th Apr 2018, 09:22
I don't think its going to die down either until after the referendum in May. They are going to milk this one. And more than likely just dump the couple now they can't use them any more.

Rest in Peace wee man, from a daddy x

BehindBlueEyes
28th Apr 2018, 09:32
My my, now there's a surprise ......

https://www.theguardian.com/uk-news/2018/apr/28/call-from-god-american-pro-lifers-role-in-alfie-evans-battle



The OP has been strangely silent of late on this topic.....possibly he may care to comment on the above, and previous, link from the Guardian.

Very, very interesting reading.

It is abhorrent that these fundamentalists can hijack such a sensitive issue for their own agenda and to accuse tthe authorities of being “hellbent” on killing him “to cover something up” is even more disgusting. Extremists from ANY faith are a danger to us all. It seems such a dichotomy that on one hand, a religion that puts love of all at the pinnacle of its teachings almost encourages hate and anger to further its causes.

Incidentally, as mentioned in this article, there is also an anti homosexual agenda; are gay people also not allowed to believe in a god or is it only the privilege of straight people? Surely, if you follow your bible religiously - pun intended - God made the world, and EVERYTHING in it?

abgd
28th Apr 2018, 10:05
Poor kid. Poor parents. And for that matter, poor medical staff.

P​​​​​​lease explain how the UK government's, UK medical system's, and UK court's treatment of Alfie Evans is indicative of a much more "civilized", and "enlightened" society.

Clearly it's self-evident to you that British authorities are doing something wrong regarding this poor kid. But in what way specifically do you feel they are at fault?

bcgallacher
28th Apr 2018, 10:48
Ken V - if you are really interested in how more enlightened and civilized the likes of the UK is have a look at American infant and maternal mortality figures - some of the American southern states have figures worse than some African countries. Overall US figures are appalling - Some figures worse than Cuba. As you raised - for whatever reason, US gun ownership, you might also like to have a look at the figures for the number of children shot dead per year in the US - must make you really proud that your laws permit hundreds of children to be shot dead and twice as many maimed.

akindofmagic
28th Apr 2018, 11:15
It’s a desperately sad case all round.

What is obvious is that the grief of this child’s parents has been hijacked for their own ends by fundamentalist religious nutters (including the Pope). Their interventions have been inflammatory, disgraceful and ultimately absolutely unhelpful, have merely stoked a media shitstorm, and have resulted in medical staff, parents and even patients being intimidated and terrified by knuckle dragging imbeciles.

Meanwhile, the doctors and the various judges involved have only been concerned with one thing: what was best for a desperately (terminally) ill child. Of course, in the vast majority of cases parents can (and must) make all necessary decisions for a child unable to make those decisions for themselves. The courts do not want to interfere, and will only do so when there is a clear indication that they must do so to prevent undue suffering.

To respond to the OP: I’d say that the reasoned, measured and sensitive approach taken by the various courts is very much indicative of a civilised and enlightened society. If people want to place their trust in invisible sky pixies and believe in fairy tales, that is a matter for them, but such beliefs cannot be permitted to cause harm to children.

VP959
28th Apr 2018, 11:29
It’s a desperately sad case all round.

What is obvious is that the grief of this child’s parents has been hijacked for their own ends by fundamentalist religious nutters (including the Pope). Their interventions have been inflammatory, disgraceful and ultimately absolutely unhelpful, have merely stoked a media shitstorm, and have resulted in medical staff, parents and even patients being intimidated and terrified by knuckle dragging imbeciles.

Meanwhile, the doctors and the various judges involved have only been concerned with one thing: what was best for a desperately (terminally) ill child. Of course, in the vast majority of cases parents can (and must) make all necessary decisions for a child unable to make those decisions for themselves. The courts do not want to interfere, and will only do so when there is a clear indication that they must do so to prevent undue suffering.

To respond to the OP: I’d say that the reasoned, measured and sensitive approach taken by the various courts is very much indicative of a civilised and enlightened society. If people want to place their trust in invisible sky pixies and believe in fairy tales, that is a matter for them, but such beliefs cannot be permitted to cause harm to children.





I wholeheartedly agree, and reading through the legal judgements kindly posted by DaveReidUK made it very clear as to what the poor child's medical condition was, not in the eyes of just one doctor, but by every member of every medical team that examined him. These quotes, from the judgements, summed up how hopeless this poor child's condition was:

The stark nature of the effect of this condition is that an MRI scan undertaken at the beginning of February 2018 revealed, to quote from the Court of Appeal's previous judgment "the almost total destruction of his brain". As Hayden J said in his judgment of 11th April the "terrible reality" was that "almost the entirety of Alfie's brain (has) been eroded leaving only water and cerebral spinal fluid. By the end of February the connective pathways within the white matter of the brain which facilitate rudimentary sensation – hearing, touch, taste and sight, had been obliterated. They were no longer even identifiable on the MRI scan". The effect of what had occurred was that Alfie's brain was "entirely beyond recovery": February judgment. Further treatment is futile, as all experts agree, both from the United Kingdom and abroad. Alfie's degenerative condition is remorseless and he will never make any developmental progress.

And this quote summed up the dreadful dilemma his father found himself in:

Hayden J paid tribute to the parents for their love, care and dedication for Alfie. He identified the father's core dilemma as being that "whilst he recognises and understands fully that the weight of the evidence spells out the futility of Alfie's situation he is, as a father, unable to relinquish hope".

The way that this fundamentalist group were able to prey on the wholly understandable hope by the parents for a miracle seem abhorrent to me. In my view they are morally worse than the criminals who specialise in robbing and attacking the old and vulnerable.

Captivep
28th Apr 2018, 12:52
Well I can see why your political career or appointment didn't get far. :) Is joke Ok? (thick Russian accent)
Sorry but it's always safe to assume people will operate in their own best interest, especially people who seek power. Even if their own self interest isn't "rational". Whatever rational means.

So, if I understand you correctly, if Alfie had been the son of someone "powerful", the Doctors in charge of his care would not have told the parents what they told Alfie's parents? Just in case the powerful person didn't agree and did...what exactly?

Highway1
28th Apr 2018, 13:14
Interesting view form across the pond..


What the British government is doing to a baby and his family is almost unbelievable. The state has determined that Alfie Evans, afflicted as he is by a rare neurodegenerative disorder, has so poor a quality of life that no efforts should be made to keep him alive.

He was taken off ventilation, but continued, surprising the doctors, to breathe. He has also been deprived of water and food. His parents want to take him to Italy, where a hospital is willing to treat him. The British government says no, and has police stationed to keep the boy from being rescued. It is, after all, in his best interest to die. (Yes, the British courts have made that determination, interpreting an act of Parliament, and in Britain "government" often refers to the executive branch. The point here is that we are discussing a policy of the British state.)

It really is this simple: The British state has decided that it is the baby’s best interest to die, and it is trying to ensure that he dies expeditiously. It is overriding parental rights in the process.

Bloomberg (https://www.bloomberg.com/view/articles/2018-04-26/alfie-evans-case-should-provoke-outrage-of-u-s-liberals)

Crownstay01
28th Apr 2018, 13:19
If by "interesting" you mean a misinformed and dishonest view. Why do you keep pushing this line?

VP959
28th Apr 2018, 13:31
Interesting view form across the pond..



Bloomberg (https://www.bloomberg.com/view/articles/2018-04-26/alfie-evans-case-should-provoke-outrage-of-u-s-liberals)

It's a pity that they don't understand the complete separation between the British State and the judiciary that applies here. Here, our judiciary is separate from the state - we have no state or government intervention in our judiciary and the British State has not played any role in any decision making at all in this case.

The key, and only, interested parties in the decision making process were:

- The medical teams, both here and from abroad, that have been treating and examining this child. The UK medical teams were employed by the hospital trust, with specific employment contracts that applied only to that hospital trust.

- The child's parents, who were initially cooperating with the UK medical team, until, for whatever reason, they felt that the options they were being offered for the treatment of their child were not what was in his best interest.

- The fundamentalist pro-life group from Italy that provided free legal counsel, free offers of an air ambulance and free offers of end-of-life care in Italy.

- The English judiciary (which is not the British State, and does not represent the British State) who made the initial decision, supported by higher courts, that any continued treatment was not in the best interest of the child.

- The European judiciary, in the form of the European Court of Human Rights, who declared the application by the child's parents to be inadmissible. The English judiciary have no say in the ECHR, the ECHR is again independent not only of the British State, but also independent of any state within the EU.

This poor and biased reporting casts doubt on the validity of the US media that are twisting this tragic story, and one has to ask whether or not some media outlets in the US may have connections with the fundamentalist pro-life organisation that were clearly influencing the decisions made by the child's parents.

Highway1
28th Apr 2018, 13:47
It's a pity that they don't understand the complete separation between the British State and the judiciary that applies here. Here, our judiciary is separate from the state - we have no state or government intervention in our judiciary and the British State has not played any role in any decision making at all in this case.

Not sure how you work that out. The State creates the Laws that the Judiciary follow - in fact there is now work being done by the parents of Charlie Gard to bring the Law up to date and try and prevent cases like we have just seen.


- The child's parents, who were initially cooperating with the UK medical team, until, for whatever reason, they felt that the options they were being offered for the treatment of their child were not what was in his best interest.


Well they probably stopped co-operating when the judiciary decided it was in the best interests of the child that he should die - if I were in their shoes I would probably do the same.

The parents were looking for a miracle - is it the role of the State to prevent them from searching for that miracle?

VP959
28th Apr 2018, 14:04
Not sure how you work that out. The State creates the Laws that the Judiciary follow - in fact there is now work being done by the parents of Charlie Gard to bring the Law up to date and try and prevent cases like we have just seen.

My point was that the judiciary are independent, in the sense that their role is to interpret, and make decisions based upon, the law. They play no part in making that law (other than by creating case law based on their interpretations), and no laws by any state are ever perfect, or cover every possible combination of events. If there is a case for the law to be changed for cases like this, then I don't have any doubt that it will be. Our law has been changed many, many times over the years, in the light of changes to society, the development of technology and the advancement of our knowledge. One slight advantage of not having a written Constitution is that there is generally a bit more freedom to change laws as the needs of society evolve and change.



Well they probably stopped co-operating when the judiciary decided it was in the best interests of the child that he should die - if I were in their shoes I would probably do the same.

No, the legal cases started after the relationship between the parents and the various medical teams treating their child had broken down. The only reason they went to court was because they did not believe what they had been told by the medical teams.

The parents were looking for a miracle - is it the role of the State to prevent them from searching for that miracle?

The state played no part in this at all. The medical teams, both from the UK and abroad, were all agreed that the child had effectively no brain left, and there was no hope of recovery at all. The parents, particularly the father, it seems, didn't want to believe this, something I can wholly understand. The State did not prevent the parents from doing anything, and stayed one step removed from the legal process. The judiciary heard evidence from both the UK medical team and other medical teams, including the team that came over from the Italian clinic. All the doctors agreed that no treatment could help the child, and that the degeneration of his brain was so severe that there was nothing left. The legal cases were the parents clutching at straws in the hope of a miracle, and it seems that a significant part of that hope came from the fundamentalist pro-life group from Italy that provided legal counsel and advice to the parents.

I think this quote by a judge in case sums up the parent's dilemma, and indirectly that of the judges in the various courts, here in the UK and in the EU, that made decisions in this case:

Hayden J paid tribute to the parents for their love, care and dedication for Alfie. He identified the father's core dilemma as being that "whilst he recognises and understands fully that the weight of the evidence spells out the futility of Alfie's situation he is, as a father, unable to relinquish hope"

DaveReidUK
28th Apr 2018, 14:20
It really is this simple: The British state has decided that it is the baby’s best interest to die, and it is trying to ensure that he dies expeditiously. It is overriding parental rights in the process.

Hmmm.

Might be a good time to quote another part of the Appeal Court judgement:

"Additionally, we deal specially with Mr Diamond's [the parents' barrister] submission that Alfie's best interests are irrelevant. In any context, but specifically in the circumstances of this case, that is a startling proposition. The universal consensus as to the importance of the rights and interests of children is reflected in the extent to which the UNCRC has been ratified. Further, it can, we think, now safely be said that the courts of England and Wales are vigilant guardians and promoters of the rights and interests of children. This has not always been the case but it has become a fundamental aspect of our justice system. This does not mean, of course, that those rights and interests override all other rights and interests but, as has been determined with considerable clarity in this case, Alfie's best interests are determinative when a court has to decide what treatment he should or should not receive. It is wholly wrong, therefore, to suggest that the parents own views can trump the judicial determination made in this case. It is also precisely because of that judicial determination that Alfie has been lawfully kept in Alder Hey hospital."

VP959
28th Apr 2018, 14:32
@Highway1,

How would a case like this be treated where you live?

My understanding is that cases like this are not unique to the UK, many countries around the world have to deal with difficult dilemmas, where the wishes of parents, medical teams, etc have to be balanced and a decision made, and I'm genuinely curious as to whether the courts would become involved in other countries, or not.

Highway1
28th Apr 2018, 14:33
The State did not prevent the parents from doing anything, and stayed one step removed from the legal process. The judiciary heard evidence from both the UK medical team and other medical teams, including the team that came over from the Italian clinic. All the doctors agreed that no treatment could help the child, and that the degeneration of his brain was so severe that there was nothing left. The legal cases were the parents clutching at straws in the hope of a miracle, and it seems that a significant part of that hope came from the fundamentalist pro-life group from Italy that provided legal counsel and advice to the parents.



i think you are trying to place way too much importance on the religious aspect. The Italian government did not grant Alfie citizenship and offer to send a jet for him because it had been taken over by Christian fundamentalists.

We ended up in a situation where overseas hospitals were offering care, yet a judge ruled that the ‘best interests’ of a child lie in cutting off its life support and allowing it to die. To me that is bad Law.

Highway1
28th Apr 2018, 14:36
My understanding is that cases like this are not unique to the UK, many countries around the world have to deal with difficult dilemmas, where the wishes of parents, medical teams, etc have to be balanced and a decision made, and I'm genuinely curious as to whether the courts would become involved in other countries, or not.

I dont know what would happen in Mexico - I dont think that Courts get involved to the same extent and if the local health services are unable to help it is not unusual for people with terminal diseases to be taken out of the country to other jurisdictions. Remember that Mexico is a Catholic country so there is still quite a bit of believing in miracles.

VP959
28th Apr 2018, 14:59
i think you are trying to place way too much importance on the religious aspect. The Italian government did not grant Alfie citizenship and offer to send a jet for him because it had been taken over by Christian fundamentalists.

We ended up in a situation where overseas hospitals were offering care, yet a judge ruled that the ‘best interests’ of a child lie in cutting off its life support and allowing it to die. To me that is bad Law.

It is worth remembering that the Italian clinic were in agreement with the medical team at Alder Hey hospital with regard to this child's condition and prospects - they were not offering treatment to save his life, just an operation to ease the palliative care at his end of life.

Earlier in this thread, BehindBlueEyes quoted a link to an article in The Guardian. Taking due regard for the fairly strong left-leaning bias of that newspaper, it is fair to say that they do tend to report facts reasonably accurately. This is the text from that article, which does help to clarify some of the actions that were going on in the background, and some facts that I suspect even this child's parents weren't fully aware of:

Within days of the death of 11-month-old Charlie Gard last July, a Christian missionary in Rome spotted a Facebook post about a baby named Alfie Evans. The post by Alfie’s father, Thomas Evans, explained that his 13-month-old son had a degenerative neurological condition and that doctors wanted to switch off his life-support. The case of Alfie, who died on Saturday at Alder Hey children’s hopsital in Liverpool, five days after his life support was switched off, was little known outside Liverpool. That soon changed.

Christine Broesamle, an American “pro-life” activist based in Italy, got in touch with Evans. Her friends were advising Charlie’s parents about flying him to Italy for treatment, she said, and the same could be done for Alfie. Unsurprisingly, Evans took up her offer of help.

After a month of working on the case from Rome, Broesamle answered what she described as a call from God and moved to Liverpool. Since last September she has lived in Merseyside and played a key role behind the scenes, advising Alfie’s parents.

This week in an interview with a Christian fundamentalist radio station in the US, she said there should be riots in Britain over Alfie’s treatment by doctors at Alder Hey hospital, whom she accused of being “hellbent” on killing him “to cover something up”.

A source close to the case has told the Guardian that Broesamle arranged for doctors to fly in from overseas to pose as family friends and medically examine Alfie. A paediatric oncologist, Dr Katarzyna Jakowska, and a colleague allegedly assessed both Alfie Evans and Isaiah Haastrup, a one-year-old child at the centre of a similar life-support battle, on the same day at different hospitals under the guise of being family friends.

Broesamle’s role, and that of a Russian law student, can be revealed after a fraught week of unsuccessful appeals to courts, protests by hundreds of supporters and “unprecedented” personal abuse of medical staff on social media.

While the arguments raged, Alfie has defied the bleakest forecasts and lived without life support from Monday until 2.30am on Saturday. Evans and Kate James, Alfie’s mother, who spends hours cuddling her boy in his hospital bed, had wanted to take the terminally ill child home for the first time in 16 months.

On Wednesday appeal court judges called for a wider investigation into concerns that the parents’ legal representation “may have been infiltrated or compromised”. The Guardian has learned that an international network of Catholic fundamentalists has played a growing role in advising Alfie’s parents, including organising Evans’ audience with the pope last week, arranging a string of medical experts to assess Alfie, and replacing the family’s Liverpool-based legal team with the anti-LGBT Christian Legal Centre this month.

Broesamle, who was named in court this week after six months of keeping out of the spotlight in Britain, is connected to the Italian “pro-lifer” network Giuristi per la Vita (Lawyers for Life), whose president has spoken about “secretly” advising Charlie Gard’s parents before his death on 28 July last year. The group works closely with the Italian lawyer Bruno Quintavalle, who has acted for the families of both Alfie Evans and Isaiah Haastrup.

Another source says Broesamle had access to a “seemingly endless pit of money and contacts”, and her network arranged for air ambulances to be ready at a moment’s notice to whisk Alfie from Alder Hey to the Vatican-approved Bambino Gesù hospital in Italy.
Broesamle arranged for Alfie’s assessment by Dr Matthias Hübner, a medical director of the paediatric air ambulance in Munich, Germany, which the high court heard had taken place “in a clandestine manner, [Hübner] posing as a friend of the family”. Hübner was said by the judge to have fallen “so far below the standards expected of his profession”.

Evans has credited Broesamle with organising the audience with the pope, but sources close to her say the meeting was arranged by two journalists from La Nuova Bussola Quotidiana, a Catholic newspaper whose coverage has been critical of the hospital and courts.

When contacted by the Guardian, Broesamle declined to speak on the record about the case, saying “one wrong move and it goes nuts and the hospital really hates me because I’ve worked so hard for Alfie’s defence”.

Those close to her have been angered by the UK media’s coverage of the case, and they directed the Guardian to the Catholic fundamentalist website Church Militant, which on Thursday published an article about the high court judge in Alfie’s case, Mr Justice Hayden, pointing out that he was “a pro-gay advocate and member of the Bar Lesbian and Gay Group (BLAGG), a network of gay lawyers in the United Kingdom”.

In court, Pavel Stroilov, the Christian Legal Centre law student representing Alfie’s parents, came in for the most searing criticism this week. He was described by Hayden as a “fanatical and deluded young man” whose submissions to the court were “littered with vituperation and bile” that was “inconsistent with the real interests of the parents’ case”.

A Russian exile who has worked as a researcher for the current Ukip leader, Gerard Batten, since 2011, Stroilov was behind the attempt by Alfie’s parents to pursue a private prosecution for murder against three Alder Hey doctors.

It is understood that Alder Hey’s legal team is considering pursuing a contempt of court case against Stroilov unless he provides details of his legal qualifications. “There are grave concerns about the wholly misleading advice that was provided by Mr Stroilov,” said a source close to Alder Hey’s legal team. Stroilov did not respond to a request for comment.

The Christian Legal Centre described the media and judicial criticism of its role in the case as “unfair and detrimental”. It said it rejected the “prejudicial and inflammatory” comments by Hayden and it did not support the criminal prosecution of doctors involved in Alfie’s care.

On Thursday night, Evans struck a more conciliatory tone when he appeared outside Alder Hey and praised the “dignity and professionalism” of Alfie’s doctors, with whom he said he wanted to “build bridges” so his son could be brought home.



With regard to this child being granted Italian nationality, that was apparently a result of the direct intervention by the Pope, after the organisation mentioned in the article above arranged for Alfie's father to have a special audience with the Pope. My guess is that the Pope has a fair bit of influence within Italy in order to make this happen - it's not something that would happen in many other countries, I suspect.

Highway1
28th Apr 2018, 15:11
It is worth remembering that the Italian clinic were in agreement with the medical team at Alder Hey hospital with regard to this child's condition and prospects - they were not offering treatment to save his life, just an operation to ease the palliative care at his end of life.


And would it have made any difference to anyone else if that had been allowed to happen?. It is what the parents wanted and the Italian Government had agreed to facilitate it. Why did the Court need to get involved and decide it was in the best interests of the child to remove all support and allow it to die? - who benefited from this decision?

abgd
28th Apr 2018, 15:14
We ended up in a situation where overseas hospitals were offering care, yet a judge ruled that the ‘best interests’ of a child lie in cutting off its life support and allowing it to die. To me that is bad Law.

The fact that Alfie was breathing spontaneously for some time suggests that his brainstem was functioning; this is also involved in pain processing, and nausea.

Being kept on life support is a deeply unpleasant thing to have done to you, if you are awake enough to be aware of it. Adults who are kept on life-support often suffer from post-traumatic stress disorder. Let's hope there was little enough of the child's mind that he didn't suffer. If there was, then the right thing to do was to cut off his life support. If there wasn't, why would it matter?

There's part of me wishes he had been taken to Rome so he could drain the religious groups dry - intensive care beds often cost a few thousand a day, and a year or two of private intensive care will make a dent in most people's finances. But at the end of the day, this child is not a pawn to be used to prove a point. He deserves to have decisions made in his best interests.

VP959
28th Apr 2018, 15:26
And would it have made any difference to anyone else if that had been allowed to happen?. It is what the parents wanted and the Italian Government had agreed to facilitate it. Why did the Court need to get involved and decide it was in the best interests of the child to remove all support and allow it to die? - who benefited from this decision?

The court had to balance:

- The impact on the child's quality of life at this very late stage in his life
- The risks involved in trying to keep the child alive, maintain the regimen of anti-seizure medication during the journey (which was reported as being difficult to manage), during a long flight in an air ambulance, with land ambulance journeys at either end
- plus the chance that the child might die during the surgery in Italy.

Against the continuity of end-of-life care, by the medical team that had more understanding of his care needs than anyone else.

Even with the benefit of hindsight I think the court made the right decision. Uprooting the child and it's parents from surroundings they were familiar with, taking them away from their family support network to a foreign country, for what? The prospect of perhaps a few more days of life at most.

If they had taken their child to Italy, and it had survived the operation, would he have lived longer, or not? No one seems to know, and even the Italian clinic aren't claiming that he would have. What would have happened is that the parents would have had to face his inevitable death surrounded by well-meaning strangers, in an unfamiliar country, with all their friends and family over 1000 miles away.

Highway1
28th Apr 2018, 16:15
The court had to balance:

- The impact on the child's quality of life at this very late stage in his life
- The risks involved in trying to keep the child alive, maintain the regimen of anti-seizure medication during the journey (which was reported as being difficult to manage), during a long flight in an air ambulance, with land ambulance journeys at either end
- plus the chance that the child might die during the surgery in Italy.

Against the continuity of end-of-life care, by the medical team that had more understanding of his care needs than anyone else.

Even with the benefit of hindsight I think the court made the right decision. Uprooting the child and it's parents from surroundings they were familiar with, taking them away from their family support network to a foreign country, for what? The prospect of perhaps a few more days of life at most.

If they had taken their child to Italy, and it had survived the operation, would he have lived longer, or not? No one seems to know, and even the Italian clinic aren't claiming that he would have. What would have happened is that the parents would have had to face his inevitable death surrounded by well-meaning strangers, in an unfamiliar country, with all their friends and family over 1000 miles away.

I still cannot see who gained out of this whole charade (apart from a lot of lawyers). The family wanted to go to Italy, the Italians wanted to take him and it probably wouldn't have made much difference to the kid either way. So if the NHS had said fine - take the kid to Italy what would have been the negative with that?.

It seems that there are lot of people who have jumped on this and taken sides simply due to their opinion of the right-to-life crowd. Even the judge got involved in that when it really had no bearing on the case at all.

radar101
28th Apr 2018, 16:28
The family wanted to go to Italy, the Italians wanted to take him and it probably wouldn't have made much difference to the kid either way.

The Law / Judiciary are set up to act in the best interest of the child. how would dragging him across to Italy to die have been in his best interests?

VP959
28th Apr 2018, 17:09
I still cannot see who gained out of this whole charade (apart from a lot of lawyers). The family wanted to go to Italy, the Italians wanted to take him and it probably wouldn't have made much difference to the kid either way. So if the NHS had said fine - take the kid to Italy what would have been the negative with that?.

It seems that there are lot of people who have jumped on this and taken sides simply due to their opinion of the right-to-life crowd. Even the judge got involved in that when it really had no bearing on the case at all.

The NHS weren't directly involved, as such, it was essentially a dispute between the Alder Hey hospital trust (which is, like all trusts, a sort of "arms length" self-trading, non-profit, body), who provided legal counsel to represent their doctors and medical team after they were unable to agree with the parents over the best way forward for the child's ongoing, terminal, palliative care.

The parents had acknowledged, in court, that they knew their child had no prospect of recovery, but held out hope for a miracle.

The medical team treating the child had concerns about the child's welfare, in particular they were unsure as to whether or not he was in pain, and had no way of being able to determine this, as pretty much his entire higher brain function had been removed as a consequence of the degenerative disease (and no one knows what this disease was). They argued that it was in the best interests of the child that he be given palliative care only, be removed from the ventilator and be allowed to pass away without further medical intervention, other than the best they could do to try and ensure he wasn't suffering. In other words, they were proposing to give him water, sustenance and whatever drugs were needed to control his seizures and try to reduce any pain or discomfort he was in.

Normally, what happens is that the medical team and the parents would together draw up a palliative care plan, but in this case the parents couldn't accept this, which is entirely understandable, so the medical team opted to seek the opinion of the court. Before doing this it has to be remembered that this medical team was not just acting on their own, they had called in neurological experts from other countries and sought as much advice and information as they could during the many months the child was in their care.

The High Court heard evidence from:

- The Alder Hey hospital medical team
- An independent review by Professor Helen Cross, the Prince of Wales Chair of Child Epilepsy at UCL and Great Ormond Street Institute of Child Health
- Another independent review (at the request of an unknown supporter) by Professor Nikolaus Haas, Medical Director of the Department of Paediatric Cardiology and Paediatric Intensive Care at the University Hospital in Munich (that agreed with the Alder Hey medical team's conclusions)
- The child's parents.

and ruled that the child should remain at Alder Hey and be allowed to die without further major medical intervention other than end-of-life palliative care. This included turning off the ventilator, probably for the reasons that @abgd gave in this post: https://www.pprune.org/jet-blast/608217-alfie-challenge-4.html#post10132635

The parents (who by this time were, I believe, under the influence of the pro-life group) appealed this decision.

The appeal was heard by the Court of Appeal, who refused the right to appeal in part, but granted leave to appeal on another part of the claim. The case then passed to the Supreme Court, at the instigation of the parents legal counsel.

The Supreme Court ruling was to refuse the appeal. The parents then went back to the Appeal Court for a second time and that court ruled that it would be lawful to remove ventilation. The parents then took the case the European Court of Human Rights (which is outwith any influence of the British State) who refused to consider the case.

So, no one gained, except the lawyers and the fundamentalist group that used the fate of this poor child to try and raise their own profile. They've certainly received a lot of publicity, and clearly have significant financial backing from people who support their views.

Arguably the parents were caused more emotional distress than they should have, the medical staff at Alder Hey received death threats and near-constant abuse from up to 200 protesters camped outside the hospital, they have been accused of murder by the organisation supporting the parents and have been accused of covering something up (hard to see how they could when they called in advice from so many independent sources, including some outside the UK).

Did this pro-life group REALLY care about the welfare of this child, or, more importantly, the welfare and ongoing support for the parents? Frankly I doubt it, I think they were, and are, focussed on pushing their own agenda to the world, and will use any means to raise their profile.

Highway1
28th Apr 2018, 17:13
So, no one gained, except the lawyers and the fundamentalist group that used the fate of this poor child to try and raise their own profile. They've certainly received a lot of publicity, and clearly have significant financial backing from people who support their views.

Arguably the parents were caused more emotional distress than they should have, the medical staff at Alder Hey received death threats and near-constant abuse from up to 200 protesters camped outside the hospital, they have been accused of murder by the organisation supporting the parents and have been accused of covering something up (hard to see how they could when they called in advice from so many independent sources, including some outside the UK).

Did this pro-life group REALLY care about the welfare of this child, or, more importantly, the welfare and ongoing support of the parents? Frankly I doubt it, I think they were, and are, focussed on pushing their own agenda to the world, and will use any means to raise their profile.

Can I suggest that your opinion of the pro-life crowd is coloring your judgement on this - They are an irrelevance to the issue.

Who would have been harmed had the kid been allowed to go to Italy?

VP959
28th Apr 2018, 17:25
Can I suggest that your opinion of the pro-life crowd is coloring your judgement on this - They are an irrelevance to the issue.

Who would have been harmed had the kid been allowed to go to Italy?

The child.

When the offer to take the child to Italy was first made, he was having near-constant seizures, had lost almost all of his higher brain function, was in a very frail condition, and yet the parents thought it was fine to load him and all his intensive care life-support provision, together with a team of specialist medical staff that had no experience of treating him at all, and no first hand knowledge of his reaction to medication, onto a land ambulance, drive to the nearest airport, transport him to an air ambulance, fly him for over 1000 miles to Rome, transfer him with the medical team, equipment etc to another land ambulance, take him to the clinic, and then perform surgery that could have been performed anywhere. All that the Italian clinic were offering was to operate to give the child a tracheotomy, so a ventilator could be connected directly to his trachea, plus a gastro-intestinal tube, so he could be fed.

All the doctors that saw him or independently reviewed him, including those from outside the UK, were of the same medical opinion. The risks involved in transporting the child were so great that it was in the child's best interest to remain at Alder Hey for his remaining few days of life. The courts ruled on the basis of the child's best interest, not that of his parents.

Highway1
28th Apr 2018, 17:35
All the doctors that saw him or independently reviewed him, including those from outside the UK, were of the same medical opinion. The risks involved in transporting the child were so great that it was in the child's best interest to remain at Alder Hey for his remaining few days of life. The courts ruled on the basis of the child's best interest, not that of his parents.

Well the Court ruled that it was in the best interest of the child that he should be killed - so I dont see how a 3 hour flight to Rome would have made his life any worse.

The parents were looking for a miracle which isn't that unusual, thousands of the terminally ill make the journey to Lourdes every year. If they had been allowed to take the child to be treated in Italy then the kids quality of life wouldn't have been materially changed but the parents would have the satisfaction of knowing they did all they could. As it is happened we had both sides of the right-to-life issue playing pingpong with this unfortunate kid - both lots should be ashamed of themselves.

treadigraph
28th Apr 2018, 17:42
He wasn't killed, he died of natural causes. He was being kept alive artificially.

VP959
28th Apr 2018, 17:48
Well the Court ruled that it was in the best interest of the child that he should be killed - so I dont see how a 3 hour flight to Rome would have made his life any worse.

The parents were looking for a miracle which isn't that unusual, thousands of the terminally ill make the journey to Lourdes every year. If they had been allowed to take the child to be treated in Italy then the kids quality of life wouldn't have been materially changed but the parents would have the satisfaction of knowing they did all they could. As it is happened we had both sides of the right-to-life issue playing pingpong with this unfortunate kid - both lots should be ashamed of themselves.

That's a bit emotive, and not at all what any court here ruled at all.

The medical team requested that, as they had been unable to agree an end-of-life palliative care plan with the parents, they be allowed to use their judgement as to how to act in the best interest of the child, by allowing him to die with as little suffering as possible. Their palliative care plan was, as I understand it, to stop artificial ventilation, (most probably for the reasons that @abgd gave in an earlier post, associated with the known pain and discomfort that ventilation can cause), to continue to administer anti-seizure medication, to continue to provide water and sustenance and to provide whatever other medication was required to minimise any pain or suffering. They agreed to do this in a palliative care environment that aims to support the child, the parents, and close friends and family, through the child's last few days of life.

The parents didn't just want to take him to Italy, either, their application to the court stated that if they felt that the medical care in the Italian clinic wasn't helping their child they were going to transport him to Munich. Clearly they were desperate, but would it really have been better for this desperately ill child to be flown around Europe for his last few days, or do as he did, and spend much of that time in his mother's arms, in a calm and peaceful environment?

Highway1
28th Apr 2018, 17:49
He wasn't killed, he died of natural causes. He was being kept alive artificially.

The Court knew that withdrawal of life support would kill him. If you know that someone needs life support to remain alive and you make the decision to switch off that life support then what are you expecting to happen?

VP959
28th Apr 2018, 17:58
The Court knew that withdrawal of life support would kill him. If you know that someone needs life support to remain alive and you make the decision to switch off that life support then what are you expecting to happen?

I think we need to bear in mind that all of this child's higher functioning brain had gone. The only part remaining was the brain stem. He could not sense anything around him, could not control any muscles, and had none of the attributes that give us a personality, all that had gone and been replaced with fluid. His autonomous bodily functions, like heart beat and breathing, were still on autopilot, but he had no brain left to control anything at all.

If this child had been the victim of an accident, and as a consequence had no brain, then would we argue that we should keep his body "alive" by artificial means? The fact is that these situations happen a fair bit, and families have to make that very difficult decision to switch off the machines. I've had to do it, with my father, and it's not something you do lightly, or without a great deal of soul searching. It's also not something you ever forget - my father passed away in 1972, when I was 19 years old and he was 43. I still know we made the right decision then, as, in reality, he had "died" some time before, anyway.

treadigraph
28th Apr 2018, 17:59
I expect them to die naturally as they would have done if they hadn't been kept alive artificially. As indeed did this little boy. It's sad but it happens every day.

His parents can now get on with grieving and I would hope go on to have other children blessed with good health.

The fact is that these situations happen a fair bit, and families have to make that very difficult decision to switch off the machines. I've had to do it, with my father, and it's not something you do lightly, or without a great deal of soul searching.

My sister and brother in law had to make that decision about his father a few years ago. It's doubtless a lot easier when the patient is very elderly but I know it was tough for them.

DaveReidUK
28th Apr 2018, 18:02
The Court knew that withdrawal of life support would kill him. If you know that someone needs life support to remain alive and you make the decision to switch off that life support then what are you expecting to happen?

He died. That's what was expected to happen. What's your point ?

abgd
28th Apr 2018, 18:25
The Court knew that withdrawal of life support would kill him.

Withdrawal of life support didn't kill him. It let him die. The difference is important.

annakm
28th Apr 2018, 23:42
Withdrawal of life support didn't kill him. It let him die. The difference is important.


Just what I was about to say - it was the degenerative disease he had that killed him, not the government, not the courts and not Alder Hay hospital.

My understanding was his body was kept functioning by machine. In effect, his respiration and circulation relied totally on an external mechanical source. If the brain has little or no synapse activity and is unable to control involuntary responses, that individual is not alive in the true sense of the word.

Tankertrashnav
29th Apr 2018, 00:21
Very disappointed to see the announcement of his death marked with a mass release of balloons. No doubt those present had the best intentions, but these balloons do not fly up to heaven, but come back down, where they can be eaten by wildlife and livestock, or marine life, sometimes with fatal results. Same applies to "sky candles".

WingNut60
29th Apr 2018, 00:36
I am opposed to the artificial prolongation of life in cases like this where all hope of recovery is futile.

However there is one aspect of withdrawal of life support, seldom mentioned, that I oppose equally strongly.
I do not know if it applies in this case, but it is not uncommon for withdrawal of life support to include removal of feeding tubes.

It is one thing to turn off artificial breathing and stimulus for the autonomous muscles.
It is quite another thing, in my mind, to remove nourishment and starve the poor b....ds to death.

And, yes, it happens.

abgd
29th Apr 2018, 00:43
Order yourself a feeding tube on Ebay and put it up your nose. Don't feed yourself through it (if you get it wrong it can choke you) but leave it in place for a few days and see how you get on. Let us know.

When I tried inserting one in my nose I vomited three times before I could get it down. Once it was in, it wasn't so bad but still not something a person would generally choose to do.

WingNut60
29th Apr 2018, 02:24
Order yourself a feeding tube on Ebay and put it up your nose. Don't feed yourself through it (if you get it wrong it can choke you) but leave it in place for a few days and see how you get on. Let us know.

When I tried inserting one in my nose I vomited three times before I could get it down. Once it was in, it wasn't so bad but still not something a person would generally choose to do.

Probably not something that anyone would wish to endure.
However for someone in a vegetative state or an induced coma then that is the only (?) way to provide nourishment which the body still needs.

Chosing between that or death through starvation, I am sure most people would opt for the feeding tube.

tescoapp
29th Apr 2018, 10:33
Order yourself a feeding tube on Ebay and put it up your nose. Don't feed yourself through it (if you get it wrong it can choke you) but leave it in place for a few days and see how you get on. Let us know


That's up there with the lads when they were doing trimix diving getting catheter's off ebay and plumbing themselves up for 3 hour deco's.

Thankfully I had a 4 hour bladder.

Lascaille
29th Apr 2018, 11:07
how to act in the best interest of the child, by allowing him to die with as little suffering as possible.

How can a braindead entity 'suffer'?

That's a question I raised before in this thread, which wasn't answered, and one I haven't seen raised elsewhere. If the child is truly as completely brain-dead as stated by the medical team then any medical arguments about 'minimising pain and suffering' must surely be discounted, no?

VP959
29th Apr 2018, 13:33
How can a braindead entity 'suffer'?

That's a question I raised before in this thread, which wasn't answered, and one I haven't seen raised elsewhere. If the child is truly as completely brain-dead as stated by the medical team then any medical arguments about 'minimising pain and suffering' must surely be discounted, no?

I don't know enough about it, but in the legal arguments in the judgements from various courts that were linked to earlier in this thread, the point was made that pain is something that may be felt with only a partially functional brain stem, and no cerebellum, which as I understand it was the case with this child. I think this goes back to our evolution, where pain is linked to our reflex system directly, so that we don't have to think in order to try and minimise it. An example would be picking up something hot and immediately dropping it by reflex, rather than the slower process of receiving the sensory information, consciously processing it and then making a decision to operate the muscles needed to reduce the source of the pain.

There was no positive evidence presented by any of the medical staff, from several different hospitals, clinics, institutes etc involved regarding pain; they all just said they didn't know, but couldn't say with any certainty that the child wasn't in pain, as there was no way for him to communicate at all, due to the total loss of all of his higher brain functionality.

oldbeefer
29th Apr 2018, 13:36
Wonder who paid for the 6 (?) different legal teams the farther employed?

VP959
29th Apr 2018, 13:42
Wonder who paid for the 6 (?) different legal teams the farther employed?

At least some of his legal team were provided free of charge by the organisation that were going to fund the air ambulance, arranged his audience with the Pope, were prepared to pay for the Italian and Munich clinics etc. The Guardian article quoted earlier seems to have details, the one in this post: https://www.pprune.org/jet-blast/608217-alfie-challenge-4.html#post10132624 Bearing in mind it's source there is inevitably going to be a bit of spin put on the story, but it looks as if the facts are probably correct.

galaxy flyer
29th Apr 2018, 14:43
Some magazine stories are fishhooks; they work their way into your mind and don’t come out. Rachel Aviv of The New Yorker has written several such pieces in the last year, including one about an African-American mother’s battle (https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die) to keep her brain-damaged daughter alive after the girl was declared clinically dead, and another about the way court-appointed legal guardians in Nevada exploit the elderly (https://www.newyorker.com/magazine/2017/10/09/how-the-elderly-lose-their-rights) placed into their care.




I’ve been thinking about both stories while watching the drama of Alfie Evans (http://catholicherald.co.uk/issues/april-27th-2018/alfie-evans-the-courts-and-the-church/), an English almost-2-year-old with a devastating brain condition whose parents were denied the chance to move him to another hospital or country by a decree from doctors and judges that the time had come for him to die. It is the second such case in the United Kingdom recently, and the basic facts are roughly similar to the last one, in which a baby named Charlie Gard (https://www.nytimes.com/2017/07/22/opinion/sunday/charlie-gard-and-the-experts.html) died of a rare genetic condition after the courts similarly ruled against his parents’ desire to take him abroad for an experimental treatment.




In each case, the doctors and judges had plausible medical arguments that the limits of treatment had been reached. (Although in the case of Evans, their expertise was undercut by the boy’s refusal to swiftly die, as predicted, when his breathing apparatus was removed; he lived for five days before expiring.) But in each case that judgment was deployed for wicked ends, stripping parents who were not unfit of their ability to act as parents, denying them the ability to choose not only last-ditch treatments but even where and how their ailing children died.




It is easy see the relevance here of Aviv’s story about Jahi McMath, a teenager from Oakland declared brain-dead after a horribly-botched tonsillectomy, whose family managed to spirit her away to New Jersey, where religious-freedom laws allow families to reject a “brain-death” ruling and keep a loved one on a feeding tube indefinitely.




Since then Jahi has survived for years despite confident medical predictions to the contrary, and she now gives pretty decent evidence of retaining some form of consciousness, some ability to listen and respond. In California her status as a dead person is under litigation; in a small apartment in New Jersey, in the care of her mother, she is very much alive.




Her fate is thus a case study in why a decent society allows families leeway to defy medical consensus: not only for the sake of parental rights and religious beliefs, not only because biases around race and class and faith creep into medical decision-making, but also because in hard cases the official medical consensus often doesn’t come close to grasping all the possibilities, and letting people go their own way is often the only way to discover where it’s wrong.




But this tendency to arrogate power away from the family is not just an issue for extreme medical cases. In Aviv’s story on guardianship among the elderly, it plays out in a more prosaic and yet similarly shocking form — with old people who are hardly incompetent handed over to professional guardians who sell their assets and consign them to assisted living facilities from which they can’t escape.




The basic dynamic is like the Gard and Evans and McMath cases but with the generational roles reversed: Instead of parents trying to pry their children away from the medical establishment, you have adult children unable to bring their parents home because their state-appointed guardians say no.




Aviv focuses on the Kafkaesque odyssey of Julie Belshe, a mother of three who spent years extracting her parents from the talons of a woman, April Parks, who was later indicted on charges of perjury and theft. But Parks flourished in a larger system designed around the assumption that old people are basically better off without their kids, because offspring are probably motivated either by raw emotionalism or by gimme-gimme avarice, as opposed to the cool wisdom of expert doctors, professional guardians, and wise judges.




Such a system is custom-built for the coming world of post-familialism, the world bequeathed to us by sexual individualism and thinning family trees. Just as more and more children are growing up without the active fathers who fought for Charlie Gard and Alfie Evans or the extended kinship network that saved Jahi McMath, more and more people will face old age without sons and daughters to care for them or to challenge the medical-judicial complex’s will.




It is the tragedy of our future that for many people there will be no exit from that complex, no alternative means of receiving care. But it is the task of our present to ensure that where the family still has the capacity to choose for an aging parent or a dying child, the family rather than the system gets to make the choice.




Yes, that choice may be wrong; it may have its own dark or foolish motivations. But those are risks a humane society has to take, so that in our weakest moments we can hope to be surrounded not just by knowledge or power, but by love.



A reasoned response to the statist approach of the UK. By Ross Douthat of the NYT ( paywall)

GF

VP959
29th Apr 2018, 15:01
A reasoned response to the statist approach of the UK. By Ross Douthat of the NYT ( paywall)

GF



It's well-written, but trying to compare one case with another is fraught with challenges, that don't seem to have been adequately addressed. For example, we measure "brain death" by detecting electrical activity from the higher functioning parts of the brain. Sometimes this is valid, sometimes it is not. There have been a few documented cases of people with virtually no brain electrical activity gradually regaining some over a period of years, if left on life support. Equally, there have been many more cases where, despite being maintained on life support for years their condition has never improved.

This case is markedly different, as the child's brain had gone, and been replaced with fluid. His skull was empty of brain matter, with no sign of any neural pathways at all. His body was functioning only from the autonomous controls provided from a degenerating brain stem, and that was degrading more with every passing day.

Although it's tempting to compare his case with that of Charlie Gard, the reality is that, medically, they seem to have been entirely different, with no similarity in the underlying cause of their medical conditions. The same applies to the other cases that are quoted - none were similar, medically, and I think this is critically important.

From all that I've read, the brain cannot just regenerate from nothing. If damaged it seems remarkable flexible in being able to "rewire" itself, at least in part, but in this case the child's skull contained fluid, rather than brain tissue. I'd be the first to say that it's way outside the boundaries of my limited medical knowledge, but can we really believe that it is possible for a child's brain to regrow once it has been almost completely destroyed? Clearly all the doctors that saw him thought that it was not possible, even those from outside the UK that were either consulted by Alder Hey or the parents.

I think we need to differentiate between someone whose brain, for whatever reason, has just shut down and stopped functioning, from someone whose brain is pretty much wholly destroyed, and that's the main criticism I have of the above article - it fails to make that key distinction in the cases that it cites.

galaxy flyer
29th Apr 2018, 15:51
But, the point who gets to decide. My vote’s for those closest to the “victim”; not the government. And, please stop with the “our judiciary is independent of politics”. They’re not, they come from the legal profession, highly politicized and have biases like anyone does. They decide on laws passed by legislatures, everywhere; they employ the government’s powers of coercion to enforce their decrees and are ultimately unaccountable to the public.

GF

VP959
29th Apr 2018, 16:37
But, the point who gets to decide. My vote’s for those closest to the “victim”; not the government. And, please stop with the “our judiciary is independent of politics”. They’re not, they come from the legal profession, highly politicized and have biases like anyone does. They decide on laws passed by legislatures, everywhere; they employ the government’s powers of coercion to enforce their decrees and are ultimately unaccountable to the public.

GF




You may choose to believe that our judiciary are not independent from government, but there is at least one member of our judiciary on this forum, and I have a feeling that he would strongly argue the case that the judiciary are independent, and are not subject to political pressure.

Governments create our laws, but the judiciary independently interpret and apply those laws, and by interpreting them they can clarify, and perhaps even change, the way a law works in practice. This case seems to have relied quite heavily on the way various laws have been interpreted in previous cases, for example, with some interpretations being considered valid and some being considered less valid, or even inapplicable to this particular case.

I wouldn't disagree with your basic premise that the decision should rest with those closest to the child, with one key exception. The decision must be made on the basis of what is in the best interest of the child.

Not the best interest of the parents.

Not the best interest of the medical team.

Not the best interest of the sympathetic general public.

Not the best interest of the Alder Hey hospital trust

But the best interest of the child, and that alone has to be the deciding factor.

If an independent judiciary are not best placed to hear evidence from all interested parties and make a decision as to what, in their view, is the action to take that is in the best interest of the child, then who is?

It's a tough one, as the parents are heavily influenced by their love for their child, and hampered in making any decision both by that and by their understanding of the complexities of his medical condition. As several different doctors reported when giving evidence, the parents often seemed to correlate movements that were caused by seizures (from the records of residual brain stem electrical activity), with a response to sensory stimuli. I'm sure anyone can understand why hope would lead them to believe this to be the case, but that doesn't make it true.

The medical teams (and he was examined by several, some from outside the UK) were all agreed that his condition could only lead to his death, and that there was no treatment to prevent this, or increase his chance of survival, even for a few days. None of the medical staff that examined him, analysed the various test results, etc, disagreed with the prognosis of the Alder Hay medical team, not even the independent specialist from Germany that the parents arranged to see him. Even the boy's father agreed, when giving evidence, that he accepted what the medical teams had told him about the prognosis for his son was true, but as a father he could not give up hope.

As a thought experiment, we can try to imagine what may have happened if the parents had been allowed, right from the start, to make all the key decisions about their son's medical care and treatment. Firstly, there would not have been a disagreement with the Alder Hey medical team, so there would have been no court cases. Secondly, their son might have "lived" for a few more days, in the sense that his heart was beating and a machine was allowing him to breathe. We already know that, before the disagreement between the parents and the medical team, he had no brain electrical activity, and that, an MRI scan on the 18th February showed that he had no brain tissue inside his skull, just fluid. The only remaining part of his neurological system that was still partially functionl was his brain stem and it's connected neural pathways, and there were indications that this, too, was degenerating fairly rapidly.

I don't know enough about medicine to know how badly degraded the autonomous part of our nervous system has to be before organs start to fail, but I do know, from my own father's death, that there is a point where other organs, like the kidneys, liver, digestive system etc, start to fail, as there seems to be only so long that they can continue to function without the regulation provided by some elements of brain function.

So, had the parents been fully in control of their child's treatment and care, would the outcome have been any different? I honestly can't say that we can tell one way or the other. There's a chance their son may have had a functioning body for a few more days, perhaps a few more weeks. There's also a chance that, unknown to them, he was experiencing severe pain at a fundamental level, from his remaining autonomous nervous system. The certainty is, that no matter who made the decisions, their son was going to die fairly soon. Some could, quite reasonably, argue that their son was already dead long before he was taken off the ventilator, as the evidence of the 18th February MRI, plus the regular EEGs, showed that he had no functional brain, that part of our brain that makes us human, gives us personality, character, the ability to sense and react to the world around us.

DaveReidUK
29th Apr 2018, 16:42
And, please stop with the “our judiciary is independent of politics”. They’re not, they come from the legal profession, highly politicized and have biases like anyone does. They decide on laws passed by legislatures, everywhere; they employ the government’s powers of coercion to enforce their decrees and are ultimately unaccountable to the public.
There are more than enough instances on record of the Government being held to account by the courts to demonstrate that that's simply not the case.

DaveReidUK
29th Apr 2018, 17:03
And while we're on legal topics, here's a rather damning indictment of the somewhat murky role of the "Christian Legal Centre" in the affair:

On the Naughty Step – the questionable ethics of the Christian Legal Centre (https://nearlylegal.co.uk/2018/04/on-the-naughty-step-the-questionable-ethics-of-the-christian-legal-centre/#comments)

Lascaille
29th Apr 2018, 19:24
I don't know enough about it, but in the legal arguments in the judgements from various courts that were linked to earlier in this thread, the point was made that pain is something that may be felt with only a partially functional brain stem, and no cerebellum

It's true, and reflex reactions to pain will still occur even under heavy sedation. For example, a fully anaesthetised patient will still exhibit autonomic responses to the cutting and pain-inducing aspects of surgery to the extent that analgesia is still required to prevent the body unconsciously spiking the blood pressure etc.

With that in mind, is surgery performed under full anaesthetic 'causing pain and suffering?'

galaxy flyer
29th Apr 2018, 21:00
There are more than enough instances on record of the Government being held to account by the courts to demonstrate that that's simply not the case.

so, too here in the US; witness, Watergate trials, Pentagon Papers, Citizens United case. It isn’tt politicians exerting influence on the judiciary, US or UK, it’s that judges have an inherent bent toward using law as a means to an end. This is a case where they, IMO, remained “hands off”; let the parents decide upon advice of the medical staff. I also recognize that financial facts pertain. If the NHS, Medicare, insurers reach their contractual or political limits on providing money, the burden transfers for any further care to the family.

In this case, it would be government physically stopping the parents from removing the child to other medical care—they weren’t neglecting the child, refusing to care for him, they wanted to act as responsible parents, but government syelled and used its powers of coercion to remove the decision from them. That, IMHO, is a wrong use of government. Just as it is for various religious organizations using this dire situation to advance an agenda far removed from the parent angle.

GF

Mariner9
29th Apr 2018, 21:08
With that in mind, is surgery performed under full anaesthetic 'causing pain and suffering?'

Having read the various Judgements listed earlier this thread, the 'pain and suffering' referred to as reason to prevent travel is primarily that potentially caused by the brain spasms that would (the credible doctors on both sides agreed) likely arise in transportation to another hospital for the surgery (which in any event the doctors agree would have made no difference to Alfie's prognosis).

It was a desperately sad situation, in which Alfie would inevitably have passed away regardless of the outcome of the various legal battles. I commend a reading of the Judgements to those on here who think the wrong decision was made.

DaveReidUK
29th Apr 2018, 23:05
In this case, it would be government physically stopping the parents from removing the child to other medical care—they weren’t neglecting the child, refusing to care for him, they wanted to act as responsible parents, but government syelled and used its powers of coercion to remove the decision from them. That, IMHO, is a wrong use of government.

Have you any evidence at all to suggest that those weren't the decisions of an independent judiciary ?

If so, would you like to share it ?

galaxy flyer
30th Apr 2018, 00:32
I already agreed your judiciary, as is ours, independent of direct political influence. The PM is t calling in a favor from the judge. The problem I have is that, in the absence of malice on the parents’ part, they are put in the position to make any decisions regarding the child—it’s the parents’ call. In any case, it is government’s responsibility to enforce the judge’s opinion.

How did the judge become involved in what should should have been a parental decision? Once the judge made an opinion, I presume it would be the government carrying it out. Could the parents have removed the child without the police stopping them?

GF

abgd
30th Apr 2018, 00:45
With that in mind, is surgery performed under full anaesthetic 'causing pain and suffering?'

One difference is that in surgery, the brainstem is anaesthetised to some extent. Alfie was apparently able to breathe spontaneously, but a person having surgery would generally not be able to, even if they were still exhibiting autonomic responses to pain. Anaesthesia is not an 'all or nothing' endeavour.

Is a cortex necessary for sentience? Certainly it's true that when areas of cortex are damaged, this seems to selectively impair awareness. On the other hand lots of non-mammals seem to manage well without a cortex - whether they have any form of consciousness or not I don't know, but I would look unfavourably on anybody who chose to mistreat a fish or bird on the grounds that they have no cortex and must therefore be non-sentient.

abgd
30th Apr 2018, 00:55
How did the judge become involved in what should should have been a parental decision?

My understanding is that when parents and doctors differ substantively regarding treatment, they must seek a judicial opinion. If the judges agree that parents should have autonomy to make particular decisions for their children, then they can and the doctors would be forced to acquiesce.

DaveReidUK
30th Apr 2018, 06:42
The PM is calling in a favor from the judge.

So Theresa May has Mr Justice Hayden (High Court), Lady Justice King (Court of Appeal), Lord Justice McFarlane (Court of Appeal), Lord Justice McCombe (Court of Appeal), Lady Hale (Supreme Court), Lord Kerr (Supreme Court), Lord Wilson (Supreme Court), Lord Justice Davis (Court of Appeal), Lady Justice King (Court of Appeal) and Lord Justice Moylan (Court of Appeal) in her pocket ?

Not to mention three unnamed ECHR judges ?

:ugh:

Effluent Man
30th Apr 2018, 08:29
Looking at these cases purely logically, and I speak as someone with a brain damaged at birth great nephew who us unable at nine years old to do anything other than make unintelligible noises and has the prospect of possibly making his teenage years at best, I would argue that it is unfair on the rest of society to spend millions on scarce resources that could have a hugely beneficial effect on the lives of many, less severe cases.

My niece would argue strongly the reverse case. But as someone once said on the subject of animal experimentation when asked if they would agree with it if it was going to save their child's life. " If it was going to save my child's life I would agree with them experimenting on you". Parents are too close to make rational judgements.

Planemike
30th Apr 2018, 11:17
Looking at these cases purely logically, and I speak as someone with a brain damaged at birth great nephew who us unable at nine years old to do anything other than make unintelligible noises and has the prospect of possibly making his teenage years at best, I would argue that it is unfair on the rest of society to spend millions on scarce resources that could have a hugely beneficial effect on the lives of many, less severe cases.

If you go down that path it is not too long before you start "bumping off" other "non-productive" members of society. Pensioners and the unemployed spring too mind....!! Not a world I wish to inhabit. Best to leave those type of decisions to God....

The situation we now have, thanks to the intervention of medical science, is we can sustain a life which in earlier times would have been extinguished naturally. Oh, and I speak as someone who has a daughter who was born two months premature, some 34 years ago. The intervention of medical science saved her. We were warned she would be handicapped, which she is to an extent but she lives in her own home and has a part time paid job dealing with the public.

eal401
30th Apr 2018, 11:20
So Theresa May has Mr Justice Hayden (High Court), Lady Justice King (Court of Appeal), Lord Justice McFarlane (Court of Appeal), Lord Justice McCombe (Court of Appeal), Lady Hale (Supreme Court), Lord Kerr (Supreme Court), Lord Wilson (Supreme Court), Lord Justice Davis (Court of Appeal), Lady Justice King (Court of Appeal) and Lord Justice Moylan (Court of Appeal) in her pocket ?

Not to mention three unnamed ECHR judges ?

:ugh:

If there is *one* thing we have learnt from this tragic case, it's how many ignorant mouth breathers are infesting society - unable to process a single rational comment.

tescoapp
30th Apr 2018, 13:08
Must admit the whole medical ethics thing is initially you think easy when it starts out a doctor shouldn't treat their own family and then rapidly goes down hill from their.

Another one again which has links with the pro-life lot and a few others is the testing for downs syndrome.

Being of an age where mates started reproducing late in life a couple of mates have a kid that rocks the extra DNA. Lovely kids happy contented in a loving family but mum and dad is over 40 not far off 50 and the kid is heathy as any thing looking at another good 60 years but can't look after themselves and isn't likely to be able to either.

The testing and stopping such pregnancy's is getting a bit heated since that new test came out. Some of the mums especially are very against this test or testing full stop. On discussion in the pub with dad it appears the underling concern is that the test becomes standard as well as normal to abort and the number of downs kids goes down.

Which you would initially think is a good thing away from the situation. But the mums are very scared that if the numbers of downs kids goes down the funding and support setup will get taken away. Its truly staggering the amount of funding that's required. And when mum and dad kick the bucket or become unable to look after them it really becomes messy.

I am sitting on the fence on this one as well as the wee mans case. Its way way more complicated than it initially looks.

BTW I really don't have a clue what the current PC term is for down syndrome so if anyone gets offended by me using it I do apologise, please let me know what the correct way of describing the condition is these days.

Mariner9
30th Apr 2018, 13:35
Quoted elsewhere from Facebook"

So far I've been quiet over the tragic case of Alfie Evans, but as a doctor, a father of four and a former intensive care doctor I feel I have a duty to speak.

Firstly, no child is the property of their parents. As parents our own anguish, emotion and needs are entirely and utterly secondary to the best interests of our children. We do not own them. We can't make demands on what happens to them like a piece of furniture. Furthermore, as parents we are naturally conflicted in deciding what is best for them in times of dire crisis. Because of the unconditional love we have for our children we will naturally cling to hope even where there is none. Despite being a doctor I find it impossible to objectively medically assess my own children, because I'm their Daddy, not their doctor.

Secondly, doctors and nurses act in the best interests of their patients - not the parents, not the press, not some feral "army," not politicians, not the Pope, the PATIENT. The first line of the modern Hippocratic Oath is "Make the care of your patient your first concern." The staff at Alder Hey were working under incredibly difficult conditions even before a mob started accusing them of murder. Now their job is impossible.

Thirdly, Alfie Evans has an irreversible, catastrophic degenerative neurological disorder with no hope of recovery. The brain does not regenerate. Respiratory function and other basic physiological reflexes are literally, neurologically nothing whatsoever to do with sentience, consciousness or self awareness. Death, surrounded by those who love Alfie, peacefully, quietly, in dignity is in his best interests, this has been affirmed not just by his doctors but by the highest Court in the land. Having pictures of him in intensive care plastered all over the press, or being used as a political and religious football, or having people scream outside his hospital room is NOT in his best interests.

Finally, the behaviour of "Alfie's Army" is, to be frank, disgusting. Threatening doctors and nurses by name such that they fear for their lives is disgusting. Threatening to storm a children's hospital is disgusting. Threatening to pull fire alarms when other children are on the operating table having life saving surgery is worse than disgusting. Piggy-backing onto the grief of the parents of a baby you have never even met is flagrant grief tourism and an ultimate act of selfishness. Furthermore, veiling such aggressive and malignant behaviour behind a pretense of faith could not be further from what it means to be a Christian.

If you believe there is a conspiracy among the medical profession, or a cover up, or you believe parents own their children, or that the parents' feelings are more important than the dignity of their child, or if you are a member of Alfie's army then please do me a favour and remove yourself from my friends list.

God Bless you, Alfie.

BehindBlueEyes
30th Apr 2018, 13:44
Interesting post tescoapp.

Trying not to be heading off on a thread drift, we had a very similar situation. My wife had a routine blood test at 16 weeks pregnant - neither of us really considering the implications of anything but a normal result - which came back at an incredibly high risk of Downs which was a complete shock as she was only 31. We talked it through and, after much emotion, decided that we would go through an amniocentesis text and if the result was positive, we would opt for termination. It wasn’t an easy choice and not undertaken lightly. We got a lot of uninvited opinions from a few people; one that sticks in my mind was, “Downs children are very lovable you know.” Which is fine when they’re 4 years old but when they are 24, and depending on severity, not so endearing or appealing. We also, like yourself, considered the impact on our other children. Whilst they were young it would have taught them to be open minded, tolerant and supportive but once we were gone, I was adamant I didn’t want to leave a responsibility on the siblings that they had no choice over.

In the end, the result came back clear and our son was born with no developmental issues at all. It seems that every so often, these false positives are thrown up by these screening procedures. I would not judge anyone who has toface this dilemma. Incidentally, one of the options instead of termination we were given at the time was to give birth and put the affected child up for adoption. That seems even more bizarre to me as ultimately, if you make the choice to proceed, you cannot then pass your responsibility to a third party. Contentious but true.

tescoapp
30th Apr 2018, 14:38
It is a wee bit of thread drift but its all revolving round the ethics of first of all the situation and secondly the process. Something to be honest with a technical back ground I am ill equipped to ponder. And I know in myself I would tend to go for the economic over the feelings side of things.

Thankfully mine came out low risk so we didn't bother and everything went well.

It mates that have started a family late, mostly they are extremely well off, both have successful careers. Desperate to have kids. Didn't want to even know what the risks were.

Now one of them has given up working and retirement is a dream of the past.

As you say I wouldn't judge anyone either way. Same in this case. I can't judge and won't judge either the parents/doctors or legal types.

Its the ethics and the repercussions of doing things differently which tickles my brain cells. Yes they could have just said take the kid but then what does that set a precedence for...
Every kid that's a Jehovah witness that needs a blood transfusion gets taken out the country so one can't be given to satisfy the beliefs of the parents?

Toadstool
30th Apr 2018, 16:46
Good debate on an emotive subject. I'm puzzled as to why the OP started it then hasn't been seen since.

Questions answered to his satisfaction, or just trolling?

DaveReidUK
30th Apr 2018, 18:02
Good debate on an emotive subject. I'm puzzled as to why the OP started it then hasn't been seen since.

Questions answered to his satisfaction, or just trolling?

We can only assume that we have satisfactorily answered his question:

please explain how the UK government's, UK medical system's, and UK court's treatment of Alfie Evans is indicative of a much more "civilized", and "enlightened" society. Give us your best shot.

:O

VP959
30th Apr 2018, 18:23
It has been an interesting debate, not least because it's a topic where it's pretty much impossible not to let your personal views intervene, and so cause a degree of bias. If we'd had a child with Down's, frankly we'd have loved it like any other, and every child or young person I've ever met with Down's has been, if anything, more lovable than most.

However, friends of my mother's (same generation, now passed, but they'd be in their early 90's if still alive) had a daughter who was born with a severe mental disability (not Down's Syndrome). Physically there was nothing at all wrong with her, but when I first met her, when she was in her mid-20's, she had a mental age of around 4 or 5, and still had to carry her favourite toy around everywhere, plus a portable radio. Once you've adapted to the disparity between her physical appearance and her true mental age she was great fun, but it was clear that she'd needed a lot of love and support from her parents. Even in though she was in her mid-20's they were still having to take her to the toilet, bathe her etc, and she'd apparently gone through a terrible time when she reached puberty, as the combination of her body changes, hormonal changes and her inability to understand what was happening at all, made her a bit of a handful.

However, the real dilemma came when her parents, by then in their late fifties, decided to go on holiday with my mother, and accept an offer of respite care from the local authority. Their daughter went to stay in a local authority care home, and they had a great holiday with my mum. However, a few weeks after they came back, they realised that their daughter was pregnant. No amount of investigation revealed who the father was, or when it had happened, their daughter just had no understanding at all of sex, and just didn't know whether she had done something wrong or not, or with whom.

Their dilemma was that they were strict Catholics, so the idea of a termination was abominable to them. Doctors tried to persuade them that their daughter just didn't have the mental capacity to care for a child, and they were unlikely to be able to cope if caring for her and her child. Fate intervened and she had a miscarriage, but then they faced another dilemma. Their faith meant that they could not sanction birth control for their daughter, nor could they agree to the suggestion that she be sterilised. They continued to look after her until they were physically unable to, when the state intervened, with their agreement. By this time their daughter was in her 40's, and they were in their 70's, but I believe that they had aged prematurely from the effort of caring for their daughter. I remember going to see them not that long before they both died (within a week of each other, just from old age), and they were still following the nightly routine one would with a 4 or 5 year old child, getting her bathed, put to bed, reading her a bedtime story etc, and doing all the inevitable cleaning up after her.

When they died she went into local authority care, and one of the first things they did was put her on contraception, followed by sterilisation. My mother (also Catholic) went ballistic, but frankly, I think the local authority made the right decision. As far as I know this lady is still alive, as she's only a few years younger than me, and always seemed very healthy. She needs practically 24 hour care, as she has all her life, but always seemed happy enough whenever I saw her.

The problem we have to deal with is that there are a lot of people like her, who aren't fortunate enough to have parents that are prepared to give up their own lives in order to provide care. Even those who are, will probably end up in local authority care eventually, something that we, as a society, have to accept and make provision for, including making some challenging moral decisions that the parents might not have agreed with.

tescoapp
30th Apr 2018, 18:58
The sterilisation ethics is also an interesting one.