Britain to cut off life support of infant Alfie Evans soon

[Nulla Bellum]

The parents were denied moving the child to Italy in September 2017.

If you strain yourself, I imagine even you could come up with a coherent argument.

No, they weren't. Stop lying.

I think we've reached the point in the discussion where your resistance against being coherent has become boring.

Have a good night.

[Fartsniffage]

No, they weren't. Stop lying.

I think we've reached the point in the discussion where your resistance against being coherent has become boring.

Have a good night.

I would love to know what world you live in, because it isn't this one.

[Nulla Bellum]

I think we've reached the point in the discussion where your resistance against being coherent has become boring.

Have a good night.

I would love to know what world you live in, because it isn't this one.

My point exactly. I live in a world that connects to an internet with a wealth of information you'd rather pretend doesn't exist.

A certain Ron White joke comes to mind.

[Fartsniffage]

I would love to know what world you live in, because it isn't this one.

My point exactly. I live in a world that connects to an internet with a wealth of information you'd rather pretend doesn't exist.

A certain Ron White joke comes to mind.

Perhaps. But so far you've provided no evidence for your claims. I appreciate it would be difficult for you to prove things that are lies but still....

Basically, put up or shut up.

[Albrenia]

I would love to know what world you live in, because it isn't this one.

My point exactly. I live in a world that connects to an internet with a wealth of information you'd rather pretend doesn't exist.

A certain Ron White joke comes to mind.

I've looked up the date in September specifically, and it says Italian specialists came out to see Alfie, and they confirmed that there was nothing they could do to treat his illness - the offer to provide other care was not even offered until later. Several different courts, judges and justices have looked over the case, all are in agreement. No rights are being breached.

This is the best I was able to find:

http://obiterj.blogspot.com.au/2018/04/ ... -case.html

[Nui-ta]

-snip-

A rather convincing argument, I must say.

Replace the position of caring for a terminally ill infant, with caring for terminally ill elderly patients --- and you have my day job!

The fact of the matter is that his parents have not committed any action which constitutes abuse. Yes, the doctors know more than they do. Yes, the child is obviously beyond the point of curative care, and it seems logically silly for parents to continue pushing for life-saving treatment.

But you know what? These are the parents of a dying 23 month old child. They may not be making the most sound decisions, but they are actively grieving and are trying to do their job as parents.

At every place I have worked at, it is the job of the healthcare professional to support a family in the middle of bereavement (grief does not start at death; grief can start as early as the realization of impending death). It is the job of the healthcare professional to explain the situation to the family and to not interfere in the family's decision-making process unless there is an active act of abuse or neglect. It is also the job of the healthcare professional to put the family in touch with social workers, chaplains, and grief counselors to help them reach the point of realization that they have to be at.

I think the hospital created a shit-storm for the family, and the family were further influenced by hard-line faith and protesters with no understanding of what it is they're actually protesting about. I think if the hospital had allowed the family to go ahead and take the boy home and start seeking alternate care, that they eventually could have come in contact with some other institution which would have served them better.

[Albrenia]

A rather convincing argument, I must say.

Replace the position of caring for a terminally ill infant, with caring for terminally ill elderly patients --- and you have my day job!

The fact of the matter is that his parents have not committed any action which constitutes abuse. Yes, the doctors know more than they do. Yes, the child is obviously beyond the point of curative care, and it seems logically silly for parents to continue pushing for life-saving treatment.

But you know what? These are the parents of a dying 23 month old child. They may not be making the most sound decisions, but they are actively grieving and are trying to do their job as parents.

At every place I have worked at, it is the job of the healthcare professional to support a family in the middle of bereavement (grief does not start at death; grief can start as early as the realization of impending death). It is the job of the healthcare professional to explain the situation to the family and to not interfere in the family's decision-making process unless there is an active act of abuse or neglect. It is also the job of the healthcare professional to put the family in touch with social workers, chaplains, and grief counselors to help them reach the point of realization that they have to be at.

I think the hospital created a shit-storm for the family, and the family were further influenced by hard-line faith and protesters with no understanding of what it is they're actually protesting about. I think if the hospital had allowed the family to go ahead and take the boy home and start seeking alternate care, that they eventually could have come in contact with some other institution which would have served them better.

I believe today they cleared up that the family is allowed to take Alfie home at any time, but the family don't want to follow that path.

[Nui-ta]

Replace the position of caring for a terminally ill infant, with caring for terminally ill elderly patients --- and you have my day job!

The fact of the matter is that his parents have not committed any action which constitutes abuse. Yes, the doctors know more than they do. Yes, the child is obviously beyond the point of curative care, and it seems logically silly for parents to continue pushing for life-saving treatment.

But you know what? These are the parents of a dying 23 month old child. They may not be making the most sound decisions, but they are actively grieving and are trying to do their job as parents.

At every place I have worked at, it is the job of the healthcare professional to support a family in the middle of bereavement (grief does not start at death; grief can start as early as the realization of impending death). It is the job of the healthcare professional to explain the situation to the family and to not interfere in the family's decision-making process unless there is an active act of abuse or neglect. It is also the job of the healthcare professional to put the family in touch with social workers, chaplains, and grief counselors to help them reach the point of realization that they have to be at.

I think the hospital created a shit-storm for the family, and the family were further influenced by hard-line faith and protesters with no understanding of what it is they're actually protesting about. I think if the hospital had allowed the family to go ahead and take the boy home and start seeking alternate care, that they eventually could have come in contact with some other institution which would have served them better.

I believe today they cleared up that the family is allowed to take Alfie home at any time, but the family don't want to follow that path.

I thought I read somewhere that they did at one point want to take the child home.

Now they want to take the child to Italy, I believe?

I don't see why they shouldn't be allowed to do this, should the government of Italy allow them to come in for care. I don't necessarily think it will change much --- it'll just bring them to an environment where the healthcare system there is more likely to focus on keeping Alfie alive. From there, we'll just have to see.

The biggest worry would be if Alfie could survive the trip; but perhaps he could. I've seen people survive stranger.

[Albrenia]

I believe today they cleared up that the family is allowed to take Alfie home at any time, but the family don't want to follow that path.

I thought I read somewhere that they did at one point want to take the child home.

Now they want to take the child to Italy, I believe?

I don't see why they shouldn't be allowed to do this, should the government of Italy allow them to come in for care. I don't necessarily think it will change much --- it'll just bring them to an environment where the healthcare system there is more likely to focus on keeping Alfie alive. From there, we'll just have to see.

The biggest worry would be if Alfie could survive the trip; but perhaps he could. I've seen people survive stranger.

Yeah, I believe a place in Italy is offering to continue to keep him alive and the family wants to go there. I imagine if carefully done he could survive the trip, even with all the air pressure and stress issues which will kill him in travel if not dealt with (I believe someone said something about specialised air ambulances or something).

It seems the judges thought the chance of painful seizure-induced death was too great, and the care in Italy only prolonging suffering, and hence banning them leaving. I am glad I don't have to make that decision, because it's a hard one indeed.

[Nui-ta]

I thought I read somewhere that they did at one point want to take the child home.

Now they want to take the child to Italy, I believe?

I don't see why they shouldn't be allowed to do this, should the government of Italy allow them to come in for care. I don't necessarily think it will change much --- it'll just bring them to an environment where the healthcare system there is more likely to focus on keeping Alfie alive. From there, we'll just have to see.

The biggest worry would be if Alfie could survive the trip; but perhaps he could. I've seen people survive stranger.

Yeah, I believe a place in Italy is offering to continue to keep him alive and the family wants to go there. I imagine if carefully done he could survive the trip, even with all the air pressure and stress issues which will kill him in travel if not dealt with (I believe someone said something about specialised air ambulances or something).

It seems the judges thought the chance of painful seizure-induced death was too great, and the care in Italy only prolonging suffering, and hence banning them leaving. I am glad I don't have to make that decision, because it's a hard one indeed.

Indeed. I think we can all agree there isn't any correct decision for this family to make. Quite sad.

[Geneviev]

Replace the position of caring for a terminally ill infant, with caring for terminally ill elderly patients --- and you have my day job!

The fact of the matter is that his parents have not committed any action which constitutes abuse. Yes, the doctors know more than they do. Yes, the child is obviously beyond the point of curative care, and it seems logically silly for parents to continue pushing for life-saving treatment.

But you know what? These are the parents of a dying 23 month old child. They may not be making the most sound decisions, but they are actively grieving and are trying to do their job as parents.

At every place I have worked at, it is the job of the healthcare professional to support a family in the middle of bereavement (grief does not start at death; grief can start as early as the realization of impending death). It is the job of the healthcare professional to explain the situation to the family and to not interfere in the family's decision-making process unless there is an active act of abuse or neglect. It is also the job of the healthcare professional to put the family in touch with social workers, chaplains, and grief counselors to help them reach the point of realization that they have to be at.

I think the hospital created a shit-storm for the family, and the family were further influenced by hard-line faith and protesters with no understanding of what it is they're actually protesting about. I think if the hospital had allowed the family to go ahead and take the boy home and start seeking alternate care, that they eventually could have come in contact with some other institution which would have served them better.

Alfie's parents deserve nothing but sympathy. The decisions they have been trying to make weren't in Alfie's best interest, but they don't want their kid to die. It makes sense. Alfie's not even two years old yet. What Alfie's parents need is proper care and counselling, and to be left alone with the decision. What they've been getting is only this horrible tragedy being made into a political mess, people protesting by making it difficult for hospitals and patients, and people being angry with them for trying to keep their son alive. Pray for Alfie, pray for his parents, pray for the people otherwise involved in this horrible story. Don't get angry, don't blame anyone.

[Nulla Bellum]

Replace the position of caring for a terminally ill infant, with caring for terminally ill elderly patients --- and you have my day job!

The fact of the matter is that his parents have not committed any action which constitutes abuse. Yes, the doctors know more than they do. Yes, the child is obviously beyond the point of curative care, and it seems logically silly for parents to continue pushing for life-saving treatment.

But you know what? These are the parents of a dying 23 month old child. They may not be making the most sound decisions, but they are actively grieving and are trying to do their job as parents.

At every place I have worked at, it is the job of the healthcare professional to support a family in the middle of bereavement (grief does not start at death; grief can start as early as the realization of impending death). It is the job of the healthcare professional to explain the situation to the family and to not interfere in the family's decision-making process unless there is an active act of abuse or neglect. It is also the job of the healthcare professional to put the family in touch with social workers, chaplains, and grief counselors to help them reach the point of realization that they have to be at.

I think the hospital created a shit-storm for the family, and the family were further influenced by hard-line faith and protesters with no understanding of what it is they're actually protesting about. I think if the hospital had allowed the family to go ahead and take the boy home and start seeking alternate care, that they eventually could have come in contact with some other institution which would have served them better.

Alfie's parents deserve nothing but sympathy. The decisions they have been trying to make weren't in Alfie's best interest, but they don't want their kid to die. It makes sense. Alfie's not even two years old yet. What Alfie's parents need is proper care and counselling, and to be left alone with the decision. What they've been getting is only this horrible tragedy being made into a political mess, people protesting by making it difficult for hospitals and patients, and people being angry with them for trying to keep their son alive. Pray for Alfie, pray for his parents, pray for the people otherwise involved in this horrible story. Don't get angry, don't blame anyone.

You make a lot of sense. It seems to me, there's a loud minority on either side of the you belong to the state / fuck the state divide who wouldn't have the slightest clue where to find an opposing view they didn't fashion from straw themselves. We're getting alot of that here.

Why does the child have to die in Britain?

If we didn't live in a world where soldiers with traumatic brain injuries could be airlifted from Iraq to Germany and life-saving health care just 15 years ago you'd think the answers to that question wouldn't be what we have seen in the thread. Maybe 15 years ago is before people here were born. Who knows.

The technology to keep the child alive in Britain, in Italy, on a plane, maybe even the international space station, exists. Italy is on standby to transport the kid. Their military has even offered an air ambulance designed for such things, like moving soldiers with traumatic brain injuries. They even gave the kid Italian citizenship.

The British government has no compelling reason to deny the parental rights of Alfie's parents. Except spite. After all, it was the British government's health care system that (mis)diagnosed the kid's brain disorder as bronchitis.

[Albrenia]

The spite theory doesn't hold water. The government has nothing to do with it. The healthcare system made the case, but not the decision. The judicial system made the decision.

[Nulla Bellum]

The spite theory doesn't hold water. The government has nothing to do with it. The healthcare system made the case, but not the decision. The judicial system made the decision.

Ah. The British judicial system is like the sewer system, you know, not a branch of government.

Fail.

[Albrenia]

The spite theory doesn't hold water. The government has nothing to do with it. The healthcare system made the case, but not the decision. The judicial system made the decision.

Ah. The British judicial system is like the sewer system, you know, not a branch of government.

Fail.

They are at least partially independent of each other, as in most democracies. Hence why things can happen like investigations into politicians, and the like.

I know you really want this to be a great big conspiracy to kill some poor kid, but it's simply not the case.

EDIT - Continuing to look for anything about claims of misdiagnosis, can't find anything reliable that states he was misdiagnosed at any point. In other news, depending on which news site you read, either his family are being allowed to take him home but they don't want to, or they're not being allowed and they want to.

[Albrenia]

If you could link to the claims of misdiagnosis, by the way, I'd appreciate it.

[The Free Joy State]

EDIT - Continuing to look for anything about claims of misdiagnosis, can't find anything reliable that states he was misdiagnosed at any point. In other news, depending on which news site you read, either his family are being allowed to take him home but they don't want to, or they're not being allowed and they want to.

I believe his father said, as of seven-thirty last night, that they were meeting with Alfie's doctors to discuss taking Alfie home for palliative care (I saw the video of him saying the same on the BBC this morning -- also asking "Alfie's Army" to go home -- so it seems reliable).

I can't seem to find any reliable reports, except the hearsay of people saying it on social media, that he was ever misdiagnosed. In fact, they've never been able to diagnose what it is at all, it's that rare.

EDIT: The bronchitis thing was from (14^th) December 2016, shortly after he initially got sick. From the judicial report:

A microbiology test on a nasopharyngeal aspirate (NPA) showed rhinovirus/ enterovirus. (The test cannot differentiate these two organisms - infection could be with either or both pathogens). We commonly isolate these viruses in infants with acute viral lower respiratory tract infections. Alfie was diagnosed with acute viral bronchiolitis and a possible prolonged febrile convulsion.

By December 15 2016, they'd realised they were mistaken, recording the child as suffering:

severe infantile progressive encephalopathy with drug and ketogenic diet resistant seizures.

As an aside, he did have a viral infection at the time, but that was successfully treated and appears unrelated to his condition.

[Vassenor]

I mean.. if only much of this was actually about the kid..

Among Alfie’s viscerally engaged army of Facebook supporters, which includes many parents of small children, you will find anti-vaxxers using the story to peddle utterly deluded junk science theories about the Vitamin K injection every newborn gets. You’ll find American gun lobby enthusiasts ranting on about how this is what happens when “the government” runs people’s lives and that’s why everyone needs to keep hold of their weapons; never mind that this decision has nothing to do with the government, resting as it does on the independent judgment of doctors upheld by an independent judiciary.

Others have sought to use the case to score cheap, wildly inaccurate points over healthcare reform in the US; to claim this is where “socialised medicine” gets you, when without the NHS and its daily miracle of providing treatment free at the point of use, Alfie’s parents would now be struggling with medical bills running into the millions.

And where far-right conspiracy sites such as Infowars and Breitbart rush in, an army of trolls inevitably follows. Staff at Alder Hey children’s hospital have experienced a horrific barrage of death threats and other online abuse. There have been ugly scenes at the hospital too, reports of over-zealous protesters blocking ambulances or intimidating visitors and patients. It is all too uncomfortably reminiscent of those who harass pregnant women outside abortion clinics and threaten to kill doctors offering terminations, so high on their self-righteous mission to save that all other human lives cease to matter.

What's wrong with that? They're just showing empathy for the kid.

[Caracasus]

Alfie's parents deserve nothing but sympathy. The decisions they have been trying to make weren't in Alfie's best interest, but they don't want their kid to die. It makes sense. Alfie's not even two years old yet. What Alfie's parents need is proper care and counselling, and to be left alone with the decision. What they've been getting is only this horrible tragedy being made into a political mess, people protesting by making it difficult for hospitals and patients, and people being angry with them for trying to keep their son alive. Pray for Alfie, pray for his parents, pray for the people otherwise involved in this horrible story. Don't get angry, don't blame anyone.

You make a lot of sense. It seems to me, there's a loud minority on either side of the you belong to the state / fuck the state divide who wouldn't have the slightest clue where to find an opposing view they didn't fashion from straw themselves. We're getting alot of that here.

Why does the child have to die in Britain?

If we didn't live in a world where soldiers with traumatic brain injuries could be airlifted from Iraq to Germany and life-saving health care just 15 years ago you'd think the answers to that question wouldn't be what we have seen in the thread. Maybe 15 years ago is before people here were born. Who knows.

The technology to keep the child alive in Britain, in Italy, on a plane, maybe even the international space station, exists. Italy is on standby to transport the kid. Their military has even offered an air ambulance designed for such things, like moving soldiers with traumatic brain injuries. They even gave the kid Italian citizenship.

The British government has no compelling reason to deny the parental rights of Alfie's parents. Except spite. After all, it was the British government's health care system that (mis)diagnosed the kid's brain disorder as bronchitis.

We really don't need strawmen with the arguments you are making in the last paragraph at least.

Our government and judiciary have done a lot of shitty things. From bringing in ASBO's that can bypass the criminal justice system and trial by jury, we've also got cutting of regulations to the point that a company can staple flammable materials to tower blocks endangering the lives of all that live in them. We've also seen non medical professionals assess disability claimants and remove benefits from those unable to work. The Windrush Generation scandal seems particularly odious and let's not forget how often paperwork relating to historical human rights abuses in former colonies is lost.

All of this makes it really weird that this case is being held up as an example of our government being a bit shitty. In this instance, the system is working.

Right - firstly, doctors - people who know this sort of thing - have stated that moving him on a plane could put him in further pain. A court has reviewed this and, weighing up the evidence has agreed. Unless you are a practising medical doctor, I'd recommend going with the experts here. They do, after all, spend quite a lot of time doing medicine. Those stethoscopes aren't just for show.

In this case, the courts are taking on board a whole heap of evidence and expert analysis and doing what they believe is best for the child. In this very tragic case, it means not moving him and running the risk of causing what is left of him further pain and discomfort chasing a futile hope. There is a very good reason why the parents, in this instance, are not the ones having a final say here. They aren't capable of making that decision and frankly shouldn't be in the position to make it. This is a very unusual, very tragic case. THis isn't about denying treatment - it's about recognising that there is absolutely nothing that can be done here and accepting that. In the same way that a court can decide to remove a child that is being neglected, the courts have ruled that the parents of this child aren't acting in their child's best interests and have intervened. That's not an attack on the parents by the way - I think I'd probably feel very much the same in their position but the fact remains. They are no longer capable of acting in their child's best interests and it has the potential to do more harm - in this instance by prolonging suffering.

I really wouldn't be that surprised if this condition was misdiagnosed to begin with. It is a very, very rare condition. If the child presented with symptoms of a more common condition, it would make sense to begin treatment as soon as possible for that more common condition. I am oversimplifying here, but that is broadly speaking how doctoring works. You don't start by assuming a very complex, incredibly rare illness if there are no signs for it and all tests point towards a more common illness. Given that this misdiagnosis crap seems to only exist on the internet rumour mill, I'm thinking on balance it has probably been pulled right out of someone's arse.

It's fairly apparent that some people have latched on to this case for political capital. Given that this child's parents - having been offered absolutely false hope - are likely going to spend the rest of their lives wondering what if - I can only conclude that those people who are cynically monopolising on the suffering of this family for political points are lower than the shit on my shoe.

[Imperializt Russia]

Is it legitimately shocking that parents know their children best? Far better than you or I, a doctor or a judge?

Yes. That is an absurd belief.

[Ifreann]

All this having been said: he should also have gone home. If he's on hospice, he should be home. If his parents decide to seek additional treatment, that's their right as parents. Healthcare professionals have to do the best they can to ensure the best treatment and care given to those under their charge, but unless the parents were being abusive they cannot deny the wishes of the parents to seek more care, even if it wasn't medically sound. Ethics in a care-giving setting are such that sometimes, you just have to let the POA do what they think is right.

I would be interested to see an investigation of the hospital's handling of the discussion between parent and clinician. I'm not saying that doctors shouldn't have their opinions respected (they did go through years of medical school), but there is still a level of choice that must be given to parents when taking care of terminally ill children.

Run by me why doctors need to put the the feelings of the parents of their patient ahead of the interests of their patient himself.

[Imperializt Russia]

The court is acting in loco parentis. It's looking after the best interest of the child.

What if the parents think treatment is better abroad? Even if they're wrong, it's their damn kid.

What if they think Gold will save him (and seemingly, they do)?

What they are seeking to do - continue 'futile' treatment (maintaining life support) that may actually cause suffering - is tantamount to abuse in the UK.
The exact same way as withholding a vital treatment to alleviate suffering would be.

I mean.. if only much of this was actually about the kid..

Among Alfie’s viscerally engaged army of Facebook supporters, which includes many parents of small children, you will find anti-vaxxers using the story to peddle utterly deluded junk science theories about the Vitamin K injection every newborn gets. You’ll find American gun lobby enthusiasts ranting on about how this is what happens when “the government” runs people’s lives and that’s why everyone needs to keep hold of their weapons; never mind that this decision has nothing to do with the government, resting as it does on the independent judgment of doctors upheld by an independent judiciary.

Others have sought to use the case to score cheap, wildly inaccurate points over healthcare reform in the US; to claim this is where “socialised medicine” gets you, when without the NHS and its daily miracle of providing treatment free at the point of use, Alfie’s parents would now be struggling with medical bills running into the millions.

And where far-right conspiracy sites such as Infowars and Breitbart rush in, an army of trolls inevitably follows. Staff at Alder Hey children’s hospital have experienced a horrific barrage of death threats and other online abuse. There have been ugly scenes at the hospital too, reports of over-zealous protesters blocking ambulances or intimidating visitors and patients. It is all too uncomfortably reminiscent of those who harass pregnant women outside abortion clinics and threaten to kill doctors offering terminations, so high on their self-righteous mission to save that all other human lives cease to matter.

Hello fellow Guardian reader!

[Escocaria]

From everything I've seen, the baby is brain dead. It's not a person anymore, it's just a living sack of unaware meat. I can understand the parents wanting to do something but it's silly and they need to realise that their child is gone and wont come back, no matter how badly they want it to.

[The Federation of Kendor]

I think I have to say that Alfie has to be euthanized. Given his brain has degenerate to only the base of his cortex and brain stem, according to the news, he cannot be saved. Thus, he must have his suffering put to an end with euthanasia

[The New California Republic]

From everything I've seen, the baby is brain dead. It's not a person anymore, it's just a living sack of unaware meat. I can understand the parents wanting to do something but it's silly and they need to realise that their child is gone and wont come back, no matter how badly they want it to.

I mean the closest thing I can think of is that it is like keeping a body alive when the head has been removed. It really is that disgusting and ghoulish. I mean Alfie's head is mostly non-functional now anyway, as he cannot hear, see, taste, smell, or think. If this situation was treated as if the kid's head has been removed, then I think that a lot less people would be arguing for him being kept alive.