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 Mozzyfuzzy wrote:

 A Town Called Malus wrote:

 Kilkrazy wrote:
Alfie Evans died last night.

http://www.bbc.co.uk/news/uk-43933056

Very sad, as the parents' hopes and dreams are dashed.

Not unexpected from a medical angle, however.

Not unexpected, inevitable.

The parents hopes and dreams would have been dashed as soon as he landed in Italy anyway. Better for it to happen here where they have friends and family to support them.

This whole thing reminds me of a similar case a while back where someone was denied the right to have a patient undergo an experimental treatment which hadn't even been tested on animals and the doctor pushing for it hadn't even seen the medical notes of the patient in question.

That was Alfie Evans.

It was Charlie Gard. Charlie Gard had mitochondrial depletion syndrome and was offered an unproven treatment that was claimed to make at best a small improvement to a very ill boy, by a doctor who had never examined him, when the doctors, who were world recognised experts in the field, said that it was not going to work and that moving him would not be in his best interest.

For Alfie Evans there was no hope of anything other than different approaches to how he would die. The way people kept talking about the hospital in Roam offering palliative care makes me wonder if they (the press and campaigners) understood what palliative care means.

 Mozzyfuzzy wrote:

 A Town Called Malus wrote:

 Kilkrazy wrote:
Alfie Evans died last night.

http://www.bbc.co.uk/news/uk-43933056

Very sad, as the parents' hopes and dreams are dashed.

Not unexpected from a medical angle, however.

Not unexpected, inevitable.

The parents hopes and dreams would have been dashed as soon as he landed in Italy anyway. Better for it to happen here where they have friends and family to support them.

This whole thing reminds me of a similar case a while back where someone was denied the right to have a patient undergo an experimental treatment which hadn't even been tested on animals and the doctor pushing for it hadn't even seen the medical notes of the patient in question.

That was Alfie Evans.

Really? Well, that would be why then!

EDIT: Or apparently not.


Automatically Appended Next Post:

 Steve steveson wrote:


It was Charlie Gard. Charlie Gard had mitochondrial depletion syndrome and was offered an unproven treatment that was claimed to make at best a small improvement to a very ill boy, by a doctor who had never examined him, when the doctors, who were world recognised experts in the field, said that it was not going to work and that moving him would not be in his best interest.

For Alfie Evans there was no hope of anything other than different approaches to how he would die. The way people kept talking about the hospital in Roam offering palliative care makes me wonder if they (the press and campaigners) understood what palliative care means.

Thanks!

It wouldn't surprise me that many of the people commenting on this case don't understand what the actual details are and do so as a reflexive action to moronic headlines about "death panels" and "government going to inject child with same drugs used on death row".

Just look at the comments on the Fox news story about his death on facebook to see how many ignorant, stupid people there are saying that kids dying of degenerative neurological disorders thanks to death panels is what happens in single payer health systems and virulently attacking anyone who actually posts anything factual about his treatment.

As The Guardian pointed out, far from "death panels", the NHS has given Alfie Evans care that would have cost his parents millions of dollars under the US system.

 Kilkrazy wrote:
As The Guardian pointed out, far from "death panels", the NHS has given Alfie Evans care that would have cost his parents millions of dollars under the US system.

...and?

In the US, if the parent had the option to go somewhere else, no hospital or government entity in the US would've stopped them.

In the US the kid would likely already be dead because his parents are not rich. You can have your system, and we'll keep ours. Btw, the Evans could have paid for private care in the UK - they didn't have the money to do so. Private care is not illegal in the UK.

To be honest, I'm pretty done with defending public healthcare to Americans who think it's stalinism. They've got an agenda to push, and most have no experience of what a state run medical system is like. You're not going to change minds arguing with these people on the internet, because accepting they are wrong would be too painful for them.

 whembly wrote:

 Kilkrazy wrote:
As The Guardian pointed out, far from "death panels", the NHS has given Alfie Evans care that would have cost his parents millions of dollars under the US system.

...and?

In the US, if the parent had the option to go somewhere else, no hospital or government entity in the US would've stopped them.

Great. I’d far rather have a system that puts the needs of the patient first. The point the Guardien are making is that many people who are against socialised Medicean in the US claim that there are “death panels” that decided when treatment is costing too much, where as in fact both of these children received care far beyond what most people in the US could pay for or what their insurance would cover. This is nothing to do with socialised medicine, but the fact that the courts and law in the UK considers the best interest of the patient, not the wishes of the parents.

 Da Boss wrote:
In the US the kid would likely already be dead because his parents are not rich. You can have your system, and we'll keep ours. Btw, the Evans could have paid for private care in the UK - they didn't have the money to do so. Private care is not illegal in the UK.

To be honest, I'm pretty done with defending public healthcare to Americans who think it's stalinism. They've got an agenda to push, and most have no experience of what a state run medical system is like. You're not going to change minds arguing with these people on the internet, because accepting they are wrong would be too painful for them.

That's because you keep misunderstanding the US healthcare system. It's not a "you only get care if you can afford it".

In most US healthcare system, most of the reimbursements comes from both Federal and State tax systems (Medicare/Medicaid/pethora of other programs). As such, its the government that is determining what's covered and whatnot... and it's the government that is dictating & maintaining oversight over this industry. Even on top of that, the US Healthcare systems do offer "free care" to show the local community and state of the value they offer to the region (this is a complex topic, so if interested PM me and I'll describe further).

Furthermore, the VA, the largest heatlhcare system in the US, is a full on public tax-payor paid, government ran system. (more of a NHS system than a Canadian system, but not quite 100%).

So, a state-run medical system is not an alien concept to the insurgent colonists across the pond.

The issue here though...and I'm not having a "go" or being "cheeky" here... I'm genuinely curious at the whole mindset in the UK with respect to UK government and it's people.

...side topic: I think there's a large disconnect over these comparison debates over the term "government". I *think* when UK folks use the term "government", they mean in a Westminster governance system a MP Party (tories, labour, ect...) forms a government through a majority/coaltion. Which is distinctly different to describing the UK court systems or other "state" operated entities. Right? I commonly see arguments that the UK judicial system is independent, and should not be considered as part of the government. (...in which this insurgent colonist would have a brain aneurysm)

However, in the US... we colloquially refer ANY state operated/empowered entity as the "Government". Anywhere from, the local school administrators to the TSA to Congress to Judiciary Branch and of course to the Executive Branch (POTUS). Furthermore, the Executive/Legislative/Judiciary are independent co-equal branches of government. Basically any state sanction entity is what we'd call the "government". Which is why I think these conversations get muddied up a bit when UK folks keep referring to the Judiciary system as independent from the UK government, as a way to defend the judiciary.

...end side topic.

So, back to Alfie Evans: So, in the US...we do not give parents the right to decide for their children BECAUSE they always make the correct choice. We give them that right because they care more about the child's welfare than the experts do. Obviously, that's not what happened here... and I'm curious as to how you feel about how this whole thing transpried.

I think we all can agree that killing someone's child is the worst thing you can do to a human being.

Therefore, the government (or shall I say, a state sanctioned entity) should not be the absolute authority above and beyond over parents who will have to live with the agony of watching their child killed in front of them by "disinterested experts".

Especially not if you want them to continue trusting the experts to make decisions about other parts of their lives.

Yes...some parents demonstrate that they don't care, and in that case, the experts and the courts can properly intervene. That isn't the case over Alife...which in that case, we should always err on the side of the parents and family, because none of us wants our fate decided by a disinterested expert.

We would want it decided by people who love us.

The experts are not perfect... often the experts don't always know what is best for the child. Even if everyone agrees on what it is meant by what is the "best" thing.

The Italian government and hospital system was offering to pay for additional treatment and palliative care. The organization in question is the Italian national health care system (heh) and the government of Italy was attempting to facilitate the transfer (heh).

By what reasonable authority does this UK hosptial/court have to prevent this transfer? Why was it NOT enough that both Alfie parents AND the Italian government/hospitals were willing to transfer Alfie??? Does the British (and EU?) courts have a mandate to protect Italian taxpayers from their own decisions? Are they worried about some dangerous precedent?
Is there something more to this ordeal that I'm not getting???

 whembly wrote:

By what reasonable authority does this UK hosptial/court have to prevent this transfer? Why was it NOT enough that both Alfie parents AND the Italian government/hospitals were willing to transfer Alfie??? Does the British (and EU?) courts have a mandate to protect Italian taxpayers from their own decisions? Are they worried about some dangerous precedent?
Is there something more to this ordeal that I'm not getting???

Alfie was under the care of the doctors in Liverpool. For them to agree to pass him over to the parents to transport to Italy when it was not the best course of action for Alfie is to be failing in their duty of care, just like allowing a child to die by not giving them a blood transfusion against the wishes of the parents would be. When the parents are attempting to carry out actions which are detrimental to the welfare of their patient and said patient is unable to consent, the doctors are ethically obliged to attempt to prevent them doing that.

Quite simply, Alfie's welfare and the best course of action for him is the primary concern of his doctors, not what the Pope wants or the parents want. Continuing to keep him alive would cause him nothing but pain and discomfort, for no purpose.

Also, Alfie was not killed by the hospital, he was killed by a neurological disorder turning his brain into mush.

 Steve steveson wrote:
The point the Guardien are making is that many people who are against socialised Medicean in the US claim that there are “death panels” that decided when treatment is costing too much, where as in fact both of these children received care far beyond what most people in the US could pay for or what their insurance would cover.

...I don't see any corroborating sources/facts/studies that supports this claim.

Anecdotally, we have numerous children's hosptials across that US that offers care regardless of the ability to afford treatment:
https://www.shrinershospitalsforchildren.org/shc/financial-assistance
https://www.childrensmercy.org/Patients_and_Families/Support_and_Services/Social_Work/Community_Resources/Children_with_Special_Needs/
http://www.kccareclinic.org/
https://www.illinois.gov/hfs/MedicalPrograms/AllKids/Pages/about.aspx
https://businessrecord.com/PrintArticle.aspx?aid=45597&uid=171be89d-e282-4e30-8f05-621a956e1608
https://www.stlouischildrens.org/sites/default/files/ways_to_give/pdf/SLCH9506_Enowment%20Bro%20gatefoldv1_1.pdf

Thats spending about 2 minutes on google searching for entities in my neck of the neighborhood...

I don't know the breakdown of child vs. adult charity care, but last year hospital systems estimated over $100 billion in total uncompensated care (aka "Charity Care").

Our systems does have it's faults and challenges...and there's a lot to like about the NHS system. It's just that the assumption that the Guardian article pushed (that I underlined above) is an unfounded assumption.

My point wasn't that NHS provided suboptimal care (obviously not!). But, the decision to prevent Alfie's parents to transfer their child to a willing hospital was very disappointing.

It was simply that the boy was suffering, dying, sure to die. And that they determined that his right to not suffer until and eventual death was more important than the right of his parents to cling to false hope. The case is an example of respecting the right of a human to dignity, not trampling over anyone's rights.

You understand that his brain was mostly a soup of water and spinal fluid right? You don't come back from that. He was on a ventilator, he couldn't possibly continue to live on his own and in any case he was completely braindead, irretrievably so. I believe the Italian government was wrong to intervene, likely influenced by a hypocritical catholic morality.

I weirdly agree with Whembly here.

Reviewing what I have on hand, this would never have flown in the US. And, frankly, those of you who think that Alfie would have died in US care due to the expense can *EDITED HEAVILY DUE TO LANGUAGE* my mother spent her entire career as a nurse taking care of children in a vegetative state who's parents were mostly funded by the US and state governments, so please *EDITED AGAIN DUE TO LANGUAGE, ANATOMICALLY IMPROBABLE SUGGESTIONS, AND USE OF HEAVY MACHINERY*

 whembly wrote:
But, the decision to prevent Alfie's parents to transfer their child to a willing hospital was very disappointing.

Only if you put the wants of the parents above Alfies human rights.

 A Town Called Malus wrote:

 whembly wrote:

By what reasonable authority does this UK hosptial/court have to prevent this transfer? Why was it NOT enough that both Alfie parents AND the Italian government/hospitals were willing to transfer Alfie??? Does the British (and EU?) courts have a mandate to protect Italian taxpayers from their own decisions? Are they worried about some dangerous precedent?
Is there something more to this ordeal that I'm not getting???

Alfie was under the care of the doctors in Liverpool. For them to agree to pass him over to the parents to transport to Italy when it was not the best course of action for Alfie is to be failing in their duty of care. When the parents are attempting to carry out actions which are detrimental to the welfare of their patient, the doctors are ethically obliged to attempt to prevent them doing that.

Quite simply, Alfie's welfare and the best course of action for him is the primary concern of his doctors, not what the Pope wants or the parents want.

That doesn't square... what is it specifically in allowing Alfie to go to ANOTHER hospital be "failing in their duty of care". I don't see any good argument that constitutes tranferring Alfie to an Italian hospital detrimental to Alfie's welfare.

Also, Alfie was not killed by the hospital, he was killed by a neurological disorder turning his brain into mush.

If they truly believed that, then *why* does it matter to UK hospital/court for Alfie's parents to tranfer him to Italy for additional treatment & palliative care?

 BaronIveagh wrote:
I weirdly agree with Whembly here.

Reviewing what I have on hand, this would never have flown in the US.

That is due to the US system where doctors are extremely reluctant to go against the wishes of parents even when they feel that it would be ethical to do so.

Here, there is not that reluctance. The best course of action for the patient is the primary concern.


Automatically Appended Next Post:

 whembly wrote:

 A Town Called Malus wrote:

 whembly wrote:

By what reasonable authority does this UK hosptial/court have to prevent this transfer? Why was it NOT enough that both Alfie parents AND the Italian government/hospitals were willing to transfer Alfie??? Does the British (and EU?) courts have a mandate to protect Italian taxpayers from their own decisions? Are they worried about some dangerous precedent?
Is there something more to this ordeal that I'm not getting???

Alfie was under the care of the doctors in Liverpool. For them to agree to pass him over to the parents to transport to Italy when it was not the best course of action for Alfie is to be failing in their duty of care. When the parents are attempting to carry out actions which are detrimental to the welfare of their patient, the doctors are ethically obliged to attempt to prevent them doing that.

Quite simply, Alfie's welfare and the best course of action for him is the primary concern of his doctors, not what the Pope wants or the parents want.

That doesn't square... what is it specifically in allowing Alfie to go to ANOTHER hospital be "failing in their duty of care". I don't see any good argument that constitutes tranferring Alfie to an Italian hospital detrimental to Alfie's welfare.

Also, Alfie was not killed by the hospital, he was killed by a neurological disorder turning his brain into mush.

If they truly believed that, then *why* does it matter to UK hospital/court for Alfie's parents to tranfer him to Italy for additional treatment & palliative care?

Because transporting him to another hospital where he would be artificially kept alive for longer would be extending his suffering for no reason. Extending the suffering of a patient that is sure to die is detrimental to their welfare.

 BaronIveagh wrote:
I weirdly agree with Whembly here.

Reviewing what I have on hand, this would never have flown in the US. And, frankly, those of you who think that Alfie would have died in US care due to the expense can *EDITED HEAVILY DUE TO LANGUAGE* my mother spent her entire career as a nurse taking care of children in a vegetative state who's parents were mostly funded by the US and state governments, so please *EDITED AGAIN DUE TO LANGUAGE, ANATOMICALLY IMPROBABLE SUGGESTIONS, AND USE OF HEAVY MACHINERY*

Exalted for use of self censoring.

 A Town Called Malus wrote:

 whembly wrote:
But, the decision to prevent Alfie's parents to transfer their child to a willing hospital was very disappointing.

Only if you put the wants of the parents above Alfies human rights.

Huh? The parent is not respecting Alfie's human rights?

Spell this to me please. What "rights" were Alfie's parents taking away?

O.o

 A Town Called Malus wrote:

Also, Alfie was not killed by the hospital, he was killed by a neurological disorder turning his brain into mush.

Yes and no. What they did is actually what killed him. It's no different than smothering a cancer patient. You take someone off life support, and you kill them. That is the law in the US, and, strangely, here as well.

It's called 'withholding treatment'.

 whembly wrote:

 A Town Called Malus wrote:

 whembly wrote:

By what reasonable authority does this UK hosptial/court have to prevent this transfer? Why was it NOT enough that both Alfie parents AND the Italian government/hospitals were willing to transfer Alfie??? Does the British (and EU?) courts have a mandate to protect Italian taxpayers from their own decisions? Are they worried about some dangerous precedent?
Is there something more to this ordeal that I'm not getting???

Alfie was under the care of the doctors in Liverpool. For them to agree to pass him over to the parents to transport to Italy when it was not the best course of action for Alfie is to be failing in their duty of care. When the parents are attempting to carry out actions which are detrimental to the welfare of their patient, the doctors are ethically obliged to attempt to prevent them doing that.

Quite simply, Alfie's welfare and the best course of action for him is the primary concern of his doctors, not what the Pope wants or the parents want.

That doesn't square... what is it specifically in allowing Alfie to go to ANOTHER hospital be "failing in their duty of care". I don't see any good argument that constitutes tranferring Alfie to an Italian hospital detrimental to Alfie's welfare.

Also, Alfie was not killed by the hospital, he was killed by a neurological disorder turning his brain into mush.

If they truly believed that, then *why* does it matter to UK hospital/court for Alfie's parents to tranfer him to Italy for additional treatment & palliative care?

Because Alfie was suffering. There was no hope. It was prolonging his suffering pointlessly.

https://en.wikipedia.org/wiki/Children_Act_1989

watching their child killed in front of them by "disinterested experts".

Much better to have them shot by a murderous classmate and then send thoughts and prayers instead and then cash another cheque from the NRA.

..we colloquially refer ANY state operated/empowered entity as the "Government".

and then scream from the rooftops if someone uses the term "assault rfile"...

I think we all can agree that killing someone's child is the worst thing you can do to a human being.

nope.

, the experts and the courts can properly intervene. That isn't the case over Alife...

yes it is.

 Da Boss wrote:

Because Alfie was suffering. There was no hope. It was prolonging his suffering pointlessly.

Oh? So, he's brain dead and suffering? One of these things is not true, as they are mutually exclusive.

 whembly wrote:

 A Town Called Malus wrote:

Only if you put the wants of the parents above Alfies human rights.

Huh? The parent is not respecting Alfie's human rights?

Spell this to me please. What "rights" were Alfie's parents taking away?

O.o

The right to die in dignity and to not have his suffering needlessly extended.

 BaronIveagh wrote:
I weirdly agree with Whembly here.

Reviewing what I have on hand, this would never have flown in the US. And, frankly, those of you who think that Alfie would have died in US care due to the expense can *EDITED HEAVILY DUE TO LANGUAGE* my mother spent her entire career as a nurse taking care of children in a vegetative state who's parents were mostly funded by the US and state governments, so please *EDITED AGAIN DUE TO LANGUAGE, ANATOMICALLY IMPROBABLE SUGGESTIONS, AND USE OF HEAVY MACHINERY*

Fair enough, I unreservedly apologise for my misunderstanding of how care for people on life support is funded in the USA.

I still think that a child in a vegetative state is not the property of the parents. I do not believe that if someone is in Alfie's condition that keeping him "alive" on a ventilator out of misplaced hope is in his interest. I think it is macabre and twisted. I also feel. STRONGLY. That the publicity around this case is whipped up by those who want to attack state funded healthcare for political reasons, and I find that despicable. Prominent Republican politicians in the US have been tweeting about "Death Panels" and so on to score political points, and they are lower than pond scum in my estimation.

 BaronIveagh wrote:

 Da Boss wrote:

Because Alfie was suffering. There was no hope. It was prolonging his suffering pointlessly.

Oh? So, he's brain dead and suffering? One of these things is not true, as they are mutually exclusive.

He had no higher brain function. That does not automatically mean he couldn't feel pain.

 BaronIveagh wrote:

 Da Boss wrote:

Because Alfie was suffering. There was no hope. It was prolonging his suffering pointlessly.

Oh? So, he's brain dead and suffering? One of these things is not true, as they are mutually exclusive.

Well, either he was suffering or he was dead. In either case, prolonging the entire thing is macabre and in my view, morally wrong. Parents do not own their children.

 reds8n wrote:

Much better to have them shot by a murderous classmate and then send thoughts and prayers instead and then cash another cheque from the NRA.

Red, this is the UK section. You can spooge hate all over the Americans over in the US politics section.

And, it's also better than being worked to death in a child labor warehouse in Liverpool so that the check to the MP is good.

 A Town Called Malus wrote:

 BaronIveagh wrote:
I weirdly agree with Whembly here.

Reviewing what I have on hand, this would never have flown in the US.

That is due to the US system where doctors are extremely reluctant to go against the wishes of parents even when they feel that it would be ethical to do so.

Again with this misconception.

Yes, there is a phenomenon called "defensive medicine" whereby providers liberally applies various treatment plans so that the provider's backside is covered in case of being sued by stating "I did everything I could". But, different than how you are describing it...

Here, there is not that reluctance. The best course of action for the patient is the primary concern..

If true... that's fething terrifying.

Automatically Appended Next Post:

 whembly wrote:

 A Town Called Malus wrote:

 whembly wrote:

By what reasonable authority does this UK hosptial/court have to prevent this transfer? Why was it NOT enough that both Alfie parents AND the Italian government/hospitals were willing to transfer Alfie??? Does the British (and EU?) courts have a mandate to protect Italian taxpayers from their own decisions? Are they worried about some dangerous precedent?
Is there something more to this ordeal that I'm not getting???

Alfie was under the care of the doctors in Liverpool. For them to agree to pass him over to the parents to transport to Italy when it was not the best course of action for Alfie is to be failing in their duty of care. When the parents are attempting to carry out actions which are detrimental to the welfare of their patient, the doctors are ethically obliged to attempt to prevent them doing that.

Quite simply, Alfie's welfare and the best course of action for him is the primary concern of his doctors, not what the Pope wants or the parents want.

That doesn't square... what is it specifically in allowing Alfie to go to ANOTHER hospital be "failing in their duty of care". I don't see any good argument that constitutes tranferring Alfie to an Italian hospital detrimental to Alfie's welfare.

Also, Alfie was not killed by the hospital, he was killed by a neurological disorder turning his brain into mush.

If they truly believed that, then *why* does it matter to UK hospital/court for Alfie's parents to tranfer him to Italy for additional treatment & palliative care?

Because transporting him to another hospital where he would be artificially kept alive for longer would be extending his suffering for no reason. Extending the suffering of a patient that is sure to die is detrimental to their welfare.

Why? I mean, that's a mindset we'd have when cattle or horse is lamed up... put it out of it's misery.

Alfie was someone's child. Their voice matters too.

 Da Boss wrote:

Well, either he was suffering or he was dead. In either case, prolonging the entire thing is macabre and in my view, morally wrong. Parents do not own their children.

We both know that legally and medically it's not that clear cut. Brain damage can inure one to pain that would leave someone screaming on the floor normally.

 whembly wrote:

Here, there is not that reluctance. The best course of action for the patient is the primary concern..

If true... that's fething terrifying.

Why? Why is it terrifying that patients welfare is held above parents wishes? Would you be comfortable with parents being able to withhold antibiotics from their kid in hospital because they believe that antibiotics don't work?

Why? I mean, that's a mindset we'd have when cattle or horse is lamed up... put it out of it's misery.

Alfie was someone's child. Their voice matters too.

Their voice doesn't matter more than Alfie's. If they are not acting in his best interest, then they should not be given free reign to do what they want.

 A Town Called Malus wrote:

The right to die in dignity and to not have his suffering needlessly extended.

Well, one, we have no idea if he was actually suffering or not. It's hard to ask infants about that sort of thing, even if they're making noise and moving around.


'Death with Dignity'? You ever actually seen someone die? Not a lot of dignity to be found there.

Alfie was not talking or moving around, and never would - his brain was a soup of spinal fluid for the most part.

 A Town Called Malus wrote:

Why? Why is it terrifying that patients welfare is held above parents wishes? Would you be comfortable with parents being able to withhold antibiotics from their kid in hospital because they believe that antibiotics don't work?

No, it's terrifying because of how often doctors get it wrong. After all, I've been declared dead three times. It should be apparent that I disagreed. and if that can be gotten wrong, you can imagine what else might get screwed up. I'd have liked to see more opinions on the matter than were allowed into the decision making process here.


Automatically Appended Next Post:

 Da Boss wrote:
Alfie was not talking or moving around, and never would - his brain was a soup of spinal fluid for the most part.

Not the point though and you know it.