[Magdalen] Alfie Evans has died

[Roger Stokes]

On 29/04/2018 00:42, Jay Weigel wrote:
> Alfie Evans has died.
> https://www.cbsnews.com/news/alfie-evans-sick-british-toddler-at-center-of-legal-battle-dies/
>
> I don't know how many of you have been following this case, but I have, and
> I have real mixed feelings, both as a nurse and as a mother. One of the
> feelings I have is one of anger, of "Whose child is this anyway?" ISTM that
> in this case, as in another one I'll get to in a bit, that the state
> overreached itself and took possession of the child for itself, completely
> cutting off any rights of the parents at all. The parents had beef fighting
> for months to take Alfie, who suffered from a degenerative brain disorder
> so rare that it didn't even have a name, to Vatican City for experimental
> treatment (more likely, for evaluation before such treatment, but
> whatever....) but British courts ruled that they could not do so because
> the doctors treating him in Liverpool said "further treatment was futile".
> This just seems like overreach to me. The parents' campaign was backed by
> the pope and Christian groups, which helped draw international attention to
> the case. The hospital withdrew Alfie's life support Monday after a series
> of court rulings sided with the doctors and blocked further medical
> treatment. Alfie died at 2:30 am this morning Liverpool time.
>
> As a mother and a grandmother, I am furious. I can hardly put into words
> how angry this makes me. Surely the parents of such a child have the right
> to try something else, especially if the NHS isn't paying for it, which
> apparently they were not being asked to. Even if the doctors in Vatican
> City shook their heads and said "There's nothing we can do either," and
> recommended comfort care, they would have known they tried. But this
> attitude of "the child belongs to the hospital first and then to the state
> and the parents have no say" just pisses me off. (Sorry for the language.)
> If the little guy had been abused, I would feel different. I've seen that,
> and that's a whole other ball game. But Alfie's parents obviously loved him
> dearly and only wanted the best for him and they have felt for some time
> that they were NOT being listened to...and perhaps they weren't. After all,
> they are quite young. Dad is 21 and Mom is no older.
>
> As a nurse, I understand about futile treatment, certainly, but there is
> also something here about medical arrogance. I've seen that too. Plenty of
> it during my active career, especially in intensive care. It appears, at
> least in the news stories, that there's a good bit of that at play also.

Jay,

This side of the pond this case has been very much in the news so I have 
been following it as well. As a result I have to disagree with your 
assessment that this is an example of medical arrogance at work. Alfie 
had rights and there was a court-appointed /guardian ad litem/ to 
represent him and his rights. (Incidentally I find it interesting that 
the parents each had their own legal representation so did they totally 
agree on what they wanted to happen?) As you observe Alfie's condition 
did not even have a name so it is not surprising that it appears nobody 
had suggested a possible form of treatment with any theoretical or 
evidential basis for its value in this case. Relevant specialists around 
the world will have been aware of it and even if not approached directly 
they would have been able to offer advice if they knew anything that 
might help. I have heard nothing of any such offers so must assume there 
were none, and the medical arrogance you refer to would have driven a 
doctor who thought they had a possible treatrment regime to offer it.

The reality is that brain scans revealed a progressive destruction of 
the brain due to an unknown cause. The judge and the /guardian at litem/ 
had reviewed the scans and established that there was no prospect of 
remission or improvement. This conclusion was then reviewed by the 
Appeal Court, the Supreme Court and the European Court of Human Rights. 
The same courts also considered the proposal to take Alfie to Rome and 
decided unanimously that there would be no benefit in doing this. They 
were looking dispassionately at the facts rather than being ruled by the 
emotion this case engendered. That emotion led to the circus that 
appeared outside the hospital causing disruption to its work, abuse of 
the staff there and distress to other patients and their families. I am 
not saying Alfie's parents wanted that circus but by playing on people's 
emotions it was going to happen.

I think there have been no winners in this case but there have been a 
number of losers, including Alfie's parents. A rift developed between 
them and the hospital staff who wanted to help the parents accept the 
hard truth and to support them through that process. Instead there will 
be many rough edges which will hinder their emotional healing and 
ability to move on. We wouldn't have had this situation a generation ago 
since an unrealistic belief in the ability of modern medicine to cure 
all ills and the ease of modern communication led to its development. 
Since we can't turn the clock back but there are ethical and moral 
questions that need to be faced, including how long it is right to use 
artificial means to keep a human body going. The news this week that 
scientists have been able to sustain a pig's brain going by suffusing it 
with oxygenated blood suggests that it won't be long before we can do 
that with a human body but is it ethical and morally right? Does it show 
appropriate respect for a person?

Roger