Alfie Evans - More tragedy exploited?

[SusanDoris]

N

Thank you for posting that Guardian link.  Very interesting, factual and no woolly euphemisms.

[Free Willy]

N

Thank you for posting that Guardian link.  Very interesting, factual and no woolly euphemisms.

One hopes that Hinsliff is examining her own motives here but I doubt it since it looks as though she has used this opportunity to shit out some of her bugbears.

[Nearly Sane]

One hopes that Hinsliff is examining her own motives here but I doubt it since it looks as though she has used this opportunity to shit out some of her bugbears.

Is it your morning for gibberish?

[Nearly Sane]

And another I agree with


http://www.thenational.scot/news/16187626.We_owe_it_to_Alfie_Evans__parents_to_face_the_difficult_truth/

[wigginhall]

Ghastly scenes outside the hospital, Christian fanatics and trolls, I suppose.   I don't blame the parents, but those who feed off them and seem to provoke them, for example, an attempted prosecution for murder of some doctors.  Eh?   

[Nearly Sane]

Not sure the crowds are fanatics and trols. I think they just as the pictures of a child and cannot see the other side of the discussion. There are undoubted fanatics, see Ted Cruz, but I think 'Alfie's Army' is in the main just people who think the parents are right.

[wigginhall]

I just saw the film of people storming the front door of the hospital, and police keeping them out.  What were they going to do, insert a breathing tube, or mount a rescue?

[Steve H]

This 'ere so-called Christian Legal Centre seem to be absolutely despicable, and a world away from anything I recognise as Christian.

[wigginhall]

Evangelical, I guess.  Groan, puke, shudder.

[Steve H]

Evangelical, I guess.  Groan, puke, shudder.

Indeed - most "born-again" people should never have been born once.

[wigginhall]

Actually, not all evos are groan, shudder, I used to read Rachel Held Evans, who was very interesting.   But I think now she's now an Episcopalian.

[Rhiannon]

This 'ere so-called Christian Legal Centre seem to be absolutely despicable, and a world away from anything I recognise as Christian.

They’ve been around for ages. Usually they turn up in the news because they are advocating for Christians who have been sacked for evangelising in the workplace etc.

[Udayana]

It just seems to me that with better procedures we would not have these groups involved and the whole case treated as a legal issue, like a dispute over a contract.

The court report and various articles don't really explain the underlying decision by the staff, that given the condition of the child, it was "in his best interests" for life support to be be terminated but that he should not be allowed back home or to travel. On what basis are they evaluating the best interests or degree of suffering or not? If they thought death would be best, they should be able to say that.

With good explanation and support to the family I expect public interest and the hysterical exploitation would not have arisen. 

How does the UK compare with other European countries in dealing with these kinds of cases?

[Rhiannon]

I think it was pretty unequivocable; brain scans showed that the poor wee lad has mostly spinal fluid where his brain should be. Whatever is left is what is enabling him to breathe. Ending life support means that they do think death is best; travel is risky for even the most mundane things (one of my kids needed a hospital transfer for minor surgery and that was deemed so risky we went under blue lights) and it isn’t easy to control pain relief at home.

The court proceedings included the appointment of a guardian (this will be a highly trained CafCass officer) who then appoints a barrister to act for the child. Not the parents, not the hospital. The child. Unfortunately when two sides cannot agree court is the only option. It really does sound as though Alfie’s parents have been shamelessly exploited into thinking they could hang onto him in some way. The saddest thing is that their last days with him have been ruined by people who not only want to point score but who seem to have been taking some weird satisfaction in the process. Innocent people have been affected by their actions.

[wigginhall]

Good summary, Rhiannon.   It shows what a ludicrous position some right to life people can get into, whereby their shrill protests end up turning the medical staff into enemies,  and the NHS into some soulless killing machine.   I can't really understand this mindset, but I suppose it's like some pro-life people and anti-vaxxers.  Pity the parents in the middle of it.

[Harrowby Hall]

Afie's struggle is now over.

We should leave his parents in peace to grieve and to recover how best they can.

And for the rest of us? Let's see if we can inform well meaning and concerned people that the siren voices of organisations like Christian Legal Centre are not interested in anything other than their own narrow and often bigotted agendas.

[Gordon]

Sad news, but as expected - even though they courted attention I do hope the media circus will now decide to leave them alone now.

[jeremyp]

Hmm, but if so then all why all the guff about turning off life support because it is "in his best interests" ? Or considering whether he should be allowed to be taken home - but not to Italy?

That’s a good question. There was no reason IMO why he couldn’t be taken home (I’m writing this after he died btw). The only reason not to take him to Italy is the cost of the transport and the cost in every way to his parents.

[Rhiannon]

That’s a good question. There was no reason IMO why he couldn’t be taken home (I’m writing this after he died btw). The only reason not to take him to Italy is the cost of the transport and the cost in every way to his parents.

No, the judgement makes clear that the reason for not transporting him to Rome was the increased risk of him having a fatal seizure. The idea of palliative care is for death to be managed in as dignified and pain free way as possible. Dying mid-flight of a seizure is not that.

[Rhiannon]

For anyone interested the full judgement is here (this may be the same one NS linked to earlier). It really is worth a read - it offers some insight as to the underhand tactics used by those proffering ‘help’, as well as a very poignant picture of the relationship between Alfie’s Dad and his son, and his mum to both of them. They are clearly a remarkable young couple and I hope that they find a way to move forward together.

http://www.bailii.org/ew/cases/EWHC/Fam/2018/308.html

The judge seems to be extrememy careful, thorough and compassionate.

[jeremyp]

No, the judgement makes clear that the reason for not transporting him to Rome was the increased risk of him having a fatal seizure.

yes, but what would it have mattered if he did have a fatal seizure?

The idea of palliative care is for death to be managed in as dignified and pain free way as possible. Dying mid-flight of a seizure is not that.

He’s gone. He’s been gone for a long time. Concepts such as pain and dignity have not relevant to him since quite a while ago. .

[Rhiannon]

yes, but what would it have mattered if he did have a fatal seizure?
He’s gone. He’s been gone for a long time. Concepts such as pain and dignity have not relevant to him since quite a while ago. .

No, he was alive. Not able to think, communicate, even eat, but what is uncertain is the extent to which he was able to suffer. To die mid transfer of a seizure may have meant that he suffered. And it isn’t a dignified way to die. Dignity did apply to him - the judge made that clear, and that he had dignified care at Alder Hay from both family and medical teams. Dignity does matter even to those in a vegetative state. It matters because it honours the humanity of the person and it says something about us as a society.

Furthermore, he would have been in a highly medicalised situation - maybe both parents would have been allowed on the flight but no other relations and it would be uncomfortable - ambulances are. It’s not a peaceful way to go. There would then be the added complication of what to do - return mid flight, land at the closest available airfield, keep going to Rome, then get Alfie and his parents back to the UK (and thus for them without the support of family and friends...)

To say that ‘it makes no difference’ to Alfie and that the parents wishes should be paramount puts them at the heart of this, not the child.

[jeremyp]

No, he was alive. Not able to think, communicate, even eat, but what is uncertain is the extent to which he was able to suffer. To die mid transfer of a seizure may have meant that he suffered.

according to the doctors his brain was practically completely destroyed. There really was nobody there to suffer.

And it isn’t a dignified way to die. Dignity did apply to him - the judge made that clear, and that he had dignified care at Alder Hay from both family and medical teams. Dignity does matter even to those in a vegetative state. It matters because it honours the humanity of the person and it says something about us as a society.

On the subject of dignity, i think that ship sailed a long time ago. Nothing about this story is dignified but I’m afraid that, if you think there was anybody in there to care about his dignity, you are mistaken.

To say that ‘it makes no difference’ to Alfie and that the parents wishes should be paramount puts them at the heart of this, not the child.

It would have made no difference to Alfie and nor do I think what the parents want is paramount. In fact, I think their inability to accept the reality of the situation has only been damaging to them.

[Rhiannon]

according to the doctors his brain was practically completely destroyed. There really was nobody there to suffer.
On the subject of dignity, i think that ship sailed a long time ago. Nothing about this story is dignified but I’m afraid that, if you think there was anybody in there to care about his dignity, you are mistaken.
It would have made no difference to Alfie and nor do I think what the parents want is paramount. In fact, I think their inability to accept the reality of the situation has only been damaging to them.

He was a toddler. Even perfectly healthy toddlers don’t have much of a concept of dignity. But just because Alfie wasn’t capable of understanding what was happening to him  - and clearly he couldn’t, I’d already made the point that what was left of his brain could barely keep him breathing and that he was past thought - that doesn’t mean he shouldn’t be afforded the maximum dignity, including avoiding the very real possibility of an undignified death on a futile flight. And it really wasn’t certain that he couldn’t suffer in any way.

This is the view of one of the expert witnesses:

Dr Samuels filed a report which was, as I have said, solicited by the parents. F required him to attend to give oral evidence. If I may say so I thought that was a proper course for F to take. However, Dr Samuels is very clear that Alfie's prognosis is futile. He notes that BG describes him as being in a "semi-vegetative state" (my emphasis). For Dr Samuels the greatest concern was the possibility of any potential suffering that Alfie may be experiencing. He considered that the high quality intensive care that Alfie is receiving at Alder Hey could "sustain him for a long time". He noted that there is the "potential for acute infection e.g. sepsis, or hypoxia relating to seizure to cause sudden deterioration and death".

If we don’t afford the maximum dignity to those in a semi vegetative and vegetative state then what does that say about the value we place on them as human beings? They may have all but gone but they are no less worthy of the same kinds of consideration as anyone else. Unfortunately our strict anti euthanasia laws mean that we very often don’t get it right when it comes to allowing people a dignified death. At least in cases such as this it is possible, however imperfectly.

[Rhiannon]

http://www.bbc.co.uk/news/av/uk-43936682/alfie-evans-supporters-release-balloons-to-remember-toddler