Alfie Evans and prolonging the inevitable

[autigeremt 6,714]

2 hours ago, AUDub said:

But what about Alfie’s freedom? He is not the property of his parents, and if they can’t act in his best interests, I believe it is necessary for the state to step in. Somewhere, a line has to be drawn to properly balance parental rights and the child’s welfare. It’s difficult to know where that line should be drawn, but there’s no doubt in my mind it was crossed here, even if his parents meant well.

In every case, the patient’s say should be paramount. But when the patient is unable to voice an opinion, then their care team and relatives must come together and agree what is best for them, and agree on a course of action in line with what the patient would want. The patient should always be at the core of the decision making, and the role of the relatives is to guide physicians on what the patient would want, not what the relatives want (although, in the overwhelming majority of cases, this usually amounts to the same thing).

What happens when this discussion breaks down and the goals of relatives and physicians are incompatible, then there must be independent arbitration, which is done through the courts. This is not unique to the UK, and this process, which is underpinned by ethical principles of recognizing the individuals rights, exists in many countries around the world, our country included.

The responsible party should have say in most of these cases. Any other time it would fall at the hands of the responsible party. Whether it's here or in another country I feel that the government isn't capable of dealing with this on an individual basis. Just my opinion. 

[AUDub 11,184]

58 minutes ago, autigeremt said:

The responsible party should have say in most of these cases. Any other time it would fall at the hands of the responsible party.

They should, right up until the requests become unreasonable.

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Whether it's here or in another country I feel that the government isn't capable of dealing with this on an individual basis. Just my opinion. 

Luckily, cases like this are relatively rare.

[alexava 6,973]

The government is the ONLY party that has shown to be capable dealing with this poor child. His parents ( bless their hearts) were failing him. Selfishly failing. 

[TexasTiger 13,027]

14 hours ago, AUDub said:

They should, right up until the requests become unreasonable.

Luckily, cases like this are relatively rare.

What was the downside of letting his parents take him to Italy?

[AUDub 11,184]

9 hours ago, TexasTiger said:

What was the downside of letting his parents take him to Italy?

1. There was no medical benefit to transferring him. Even the Italian doctors proposing to take him to Rome and the German doctors in Munich agreed that there was nothing that  could be done to cure him, but they could keep him alive for longer. They didn’t claim to have a cure. They didn’t claim to have a diagnosis. There was no treatment plan upon landing besides a tracheotomy rather than intubation and a PEG for feeding.

2. No reasonable plan for transfer had been put forth.

3. Alfie was in no condition to travel. During the Italian doctors' examination they triggered a series of epileptic seizures, which raised concerns that further seizures would be caused by transporting him, which is part of the reason that request was refused. His response to stimuli was to have a seizure. The stress of a transfer would worsen his condition and could lead to his death in transit.

4. The possibility that Alfie was suffering could not definitively be ruled out. Applying the best interests test, the judge decided that flying Alfie around Europe to various different hospitals to conduct surgery (not for the purposes of effecting a cure, but to extend his life) was not in his best interests. Transport and surgery are not without risk, and if Alfie was capable of experiencing pain, that risk included subjecting him to unnecessary distress.

[autigeremt 6,714]

Sad how the ideals of liberty are now trumped by “process”. 

[AUDub 11,184]

6 minutes ago, autigeremt said:

Sad how the ideals of liberty are now trumped by “process”. 

Sad how platitudes are what we're reduced to.

[alexava 6,973]

2 hours ago, AUDub said:

1. There was no medical benefit to transferring him. Even the Italian doctors proposing to take him to Italy and the German doctors in Munich agreed that there was nothing that to be done to cure him, but they could keep him alive for longer. They didn’t claim to have a cure. They didn’t claim to have a diagnosis. There was no treatment plan upon landing besides a tracheotomy rather than intubation and a PEG for feeding.

2. No reasonable plan for transfer had been put forth.

3. Alfie was in no condition to travel. During the Italian doctors' examination they triggered a series of epileptic seizures, which raised concerns that further seizures would be caused by transporting him, which is part of the reason that request was refused. His response to stimuli was to have a seizure. The stress of a transfer would worsen his condition and could lead to his death in transit.

4. The possibility that Alfie was suffering could not definitively be ruled out. Applying the best interests test, the judge decided that flying Alfie around Europe to various different hospitals to conduct surgery (not for the purposes of effecting a cure, but to extend his life) was not in his best interests. Transport and surgery are not without risk, and if Alfie was capable of experiencing pain, that risk included subjecting him to unnecessary distress.

Why are people disregarding this?

[homersapien 11,453]

2 hours ago, autigeremt said:

Sad how the ideals of liberty are now trumped by “process”. 

The "ideals of liberty" require process as well.  Process is not a value in itself, it merely reflects and empowers them.   Process is necessary to protect us all.  

[homersapien 11,453]

1 hour ago, alexava said:

Why are people disregarding this?

To support their own paradigms.

[autigeremt 6,714]

11 minutes ago, homersapien said:

The "ideals of liberty" require process as well.  Process is not a value in itself, it merely reflects and empowers them.   Process is necessary to protect us all.  

Process most often erodes the tenants of freedom and is disguised by the notion of the “common good”. Men and women love to use this as a way to restrain individual freedom. 

[homersapien 11,453]

1 minute ago, autigeremt said:

Process most often erodes the tenants of freedom and is disguised by the notion of the “common good”. Men and women love to use this as a way to restrain individual freedom. 

Without process we are all just a bunch of individuals screaming at each other.  And without the concept of the "common good" we are not a nation at all.

[alexava 6,973]

32 minutes ago, autigeremt said:

Process most often erodes the tenants of freedom and is disguised by the notion of the “common good”. Men and women love to use this as a way to restrain individual freedom. 

Individual freedom can be a double edged sword. Here we have a victim with no voice. The “process “ is what gave him peace. Common good prevailed.  That’s not arguable. 

[autigeremt 6,714]

4 hours ago, alexava said:

Individual freedom can be a double edged sword. Here we have a victim with no voice. The “process “ is what gave him peace. Common good prevailed.  That’s not arguable. 

Like the voices of the unborn? I’m not arguing I’m just pointing out the oxymoron that is government making decisions for parents of children who were born into this world as a child of parents. Not government. I don’t have a dog in the fight other than an opinion and a core belief. I know I’m a dying breed and one day liberty will only exist for the supporters of a particular movement. 

[alexava 6,973]

55 minutes ago, autigeremt said:

Like the voices of the unborn? I’m not arguing I’m just pointing out the oxymoron that is government making decisions for parents of children who were born into this world as a child of parents. Not government. I don’t have a dog in the fight other than an opinion and a core belief. I know I’m a dying breed and one day liberty will only exist for the supporters of a particular movement. 

Liberty = artificially keeping a child alive, possibly in immense pain and suffering while everyone qualified to know says efforts are 100% futile. The child is being called home. Let him go. 

[AUDub 11,184]

51 minutes ago, alexava said:

Liberty = artificially keeping a child alive, possibly in immense pain and suffering while everyone qualified to know says efforts are 100% futile. The child is being called home. Let him go. 

These ham handed appeals to liberty from a supposed Libertarian would be laughable were it not for the subject being discussed and the horror of the implications of this attitude towards parenting. An attitude straight out of the feudal era. His reasoning gives the lie to those who see the involvement of the courts in issues relating to the care of children, which is sometimes absolutely necessary, as being somehow akin to socialism. On the contrary, it is the very essence of liberal individualism. Children aren't chattel.  Parents are their trustees and guardians, not their owners. 

[AUDub 11,184]

2 hours ago, autigeremt said:

Like the voices of the unborn?

That's a shiny hook. Let's see how many bites you get. 

Quote

I’m not arguing I’m just pointing out the oxymoron that is government making decisions for parents of children who were born into this world as a child of parents. Not government.

Children belong to themselves, not their parents. They have rights, which parents sometimes violate and the state must sometimes step in to protect.

It is sometimes absolutely necessary for the government to step in. 

A hypothetical (though it has happened, just so you know I'm not making things up), a court case where a parent was denying cancer treatment for their child on religious grounds. The state revokes care of the child from their parents, provides treatment and saves the child's life.

Conclusion: The state must sometimes be given the latitude to overturn parental decisions.

Do you disagree?

 

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I don’t have a dog in the fight other than an opinion and a core belief. I know I’m a dying breed and one day liberty will only exist for the supporters of a particular movement. 

Get over yourself.

[autigeremt 6,714]

18 hours ago, AUDub said:

That's a shiny hook. Let's see how many bites you get. 

Children belong to themselves, not their parents. They have rights, which parents sometimes violate and the state must sometimes step in to protect.

It is sometimes absolutely necessary for the government to step in. 

A hypothetical (though it has happened, just so you know I'm not making things up), a court case where a parent was denying cancer treatment for their child on religious grounds. The state revokes care of the child from their parents, provides treatment and saves the child's life.

Conclusion: The state must sometimes be given the latitude to overturn parental decisions.

Do you disagree?

 

Get over yourself.

I got over myself when I stepped away from supporting political failures and began thinking for myself. The state is needed in some cases but once again why can’t the parents take the child to Italy? It’s their child not the UK’s. 

[AUDub 11,184]

38 minutes ago, autigeremt said:

I got over myself when I stepped away from supporting political failures and began thinking for myself.

Then think harder. You're not exactly covering yourself with glory here. 

38 minutes ago, autigeremt said:

The state is needed in some cases but once again why can’t the parents take the child to Italy? 

Because there's no benefit for Alfie, and moving him may in fact actively cause him harm. To quote myself:

On 5/2/2018 at 8:18 AM, AUDub said:

1. There was no medical benefit to transferring him. Even the Italian doctors proposing to take him to Rome and the German doctors in Munich agreed that there was nothing that could be done to cure him, but they could keep him alive for longer. They didn’t claim to have a cure. They didn’t claim to have a diagnosis. There was no treatment plan upon landing besides a tracheotomy rather than intubation and a PEG for feeding.

2. No reasonable plan for transfer had been put forth.

3. Alfie was in no condition to travel. During the Italian doctors' examination they triggered a series of epileptic seizures, which raised concerns that further seizures would be caused by transporting him, which is part of the reason that request was refused. His response to stimuli was to have a seizure. The stress of a transfer would worsen his condition and could lead to his death in transit.

4. The possibility that Alfie was suffering could not definitively be ruled out. Applying the best interests test, the judge decided that flying Alfie around Europe to various different hospitals to conduct surgery (not for the purposes of effecting a cure, but to extend his life) was not in his best interests. Transport and surgery are not without risk, and if Alfie was capable of experiencing pain, that risk included subjecting him to unnecessary distress.

 

38 minutes ago, autigeremt said:

It’s their child not the UK’s. 

Alfie is a citizen of the UK, just like mine are citizens of the United States and the state of Alabama, with all of the rights and protections that entails. He is not the property of his parents or the state. Children belong to themselves. Sometimes parents, even the most well meaning ones, fail, and it becomes necessary for someone to step in and act in their best interests. 

[TitanTiger 20,511]

Ultimately, children are the responsibility of parents, not the state.  For the state to override and remove parental rights from the parents, there needs to be more than "we disagree with this course of treatment/action" or "we think their plan will result in more net suffering than our plan."  There needs to be clear, unmistakeable indication of abuse, neglect or intentional harm being inflicted.  That is not the case here.  The rights of the UK government and the doctors in this case should have ended at the NHS not being compelled to continue artificial life support treatments or preventing Alfie's parents from performing any sort of obvious tortuous experimental treatments on him (ala, the witch doctor in Tanzania crack I made earlier).  Not even the belief that moving him will produce temporary suffering they don't like is sufficient here.  The offer in the end should have been that the UK health service will work with Alfie's parents to provide palliative care in the hospital or at home, or Alfie's parents could take him to another hospital, private or out of the country if they wished to extend his life support treatment any longer.

I realize there are no easy answers in that Alfie, barring a literal miracle, is not coming back to normal.  I realize that there are disagreements over what level of suffering vs hastened death is appropriate.  But those are utilitarian arguments and in the end, they are not compelling arguments to railroad the rights of Alfie's parents.  Alfie is not a possession of the state.  The state is an absolute last resort to step in when a parent has utterly and egregiously abdicated or abused their parental rights.  That is not what Alfie's parents were seeking to do here.

[alexava 6,973]

10 hours ago, TitanTiger said:

Ultimately, children are the responsibility of parents, not the state.  For the state to override and remove parental rights from the parents, there needs to be more than "we disagree with this course of treatment/action" or "we think their plan will result in more net suffering than our plan."  There needs to be clear, unmistakeable indication of abuse, neglect or intentional harm being inflicted.  That is not the case here.  The rights of the UK government and the doctors in this case should have ended at the NHS not being compelled to continue artificial life support treatments or preventing Alfie's parents from performing any sort of obvious tortuous experimental treatments on him (ala, the witch doctor in Tanzania crack I made earlier).  Not even the belief that moving him will produce temporary suffering they don't like is sufficient here.  The offer in the end should have been that the UK health service will work with Alfie's parents to provide palliative care in the hospital or at home, or Alfie's parents could take him to another hospital, private or out of the country if they wished to extend his life support treatment any longer.

I realize there are no easy answers in that Alfie, barring a literal miracle, is not coming back to normal.  I realize that there are disagreements over what level of suffering vs hastened death is appropriate.  But those are utilitarian arguments and in the end, they are not compelling arguments to railroad the rights of Alfie's parents.  Alfie is not a possession of the state.  The state is an absolute last resort to step in when a parent has utterly and egregiously abdicated or abused their parental rights.  That is not what Alfie's parents were seeking to do here.

Disagree. Not their intent but it was the result.  No miracle was coming.  

[TitanTiger 20,511]

4 minutes ago, alexava said:

Disagree. Not their intent but it was the result.  No miracle was coming.  

That's not the state's place to decide.  When the state moves into usurp parental rights, it needs to not just be something the state disagrees with but something egregious and obvious.  Allowing him to come home or for another hospital to continue life support a little while longer does not meet that bar.

[TitanTiger 20,511]

Incidentally, I'm not the only one who sees this danger of granting the state too much power.  It's especially so in a country like England where the state not only is the courts, but also the ones who control the purse strings because of nationalized health care.  To grant the state not only the power to (necessarily) ration health care and decide when no more money or effort will be spent, but also the power to prevent parents/guardians/spouses from taking their sick loved ones to someone who will spend more money and effort is tilting the playing field too far in one direction:

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Still, the precedent that the state, rather than parents, should be considered the arbitrators of what is best for a child is an uncomfortable one. Whether or not the Evans family was right to believe that their son’s condition was treatable, Alder Hey’s refusal to allow the Evanses to seek treatment elsewhere — when other hospitals offered to do so — sets a difficult precedent about the limits of state power. The suggestion that parents are not their children’s best advocates is one that strikes at the heart of centuries’ worth of social contract.

And even if the Evanses’ perceptions of Alfie’s condition were inaccurate, does the prolonging of his life — especially as it was no conclusively proven that Alfie felt pain in his condition — rise to the level of child abuse that the Children Act was intended to guard against? At what point does the gap between parental and state views of what is best for a child require direct intervention, or the usurpation of parental rights?

State intervention in a family’s medical decision — even if that intervention is ultimately justified as the right thing for the child — is, in fact a major statement about the role of both family and state in political life. As New York Times columnist Ross Douthat wrote of the Charlie Gard case: “The rights of parents are essential to a free society’s architecture. ... To intervene on behalf of experts against the family is sometimes necessary but always dangerous.” 

https://www.vox.com/policy-and-politics/2018/4/27/17286168/alfie-evans-toddler-uk-explained

 

[AUDub 11,184]

 

2 hours ago, TitanTiger said:

That's not the state's place to decide. When the state moves into usurp parental rights, it needs to not just be something the state disagrees with but something egregious and obvious.  Allowing him to come home or for another hospital to continue life support a little while longer does not meet that bar.

From the perspective of his medical outlook, this fits the bill of “egregious and obvious.”

There was no therapy. None whatsoever. His brain was so damaged that 70% of it was just gone. You cannot magically make a new brain appear once it's been destroyed. It's as impossible as regrowing all your limbs once they've been cut off.

The therapy offered by the Italian hospital was cutting a hole in his neck and putting a breathing tube in his lungs so his body could be kept alive artificially, and a PEG tube for feeding. Both invasive surgeries, both dangerous in his condition at the time. Hell, even the Italian doctors agreed that attempting to move him from Liverpool to Rome would exacerbate his seizures, accelerate the rate of brain damage, and carry a high risk of him dying en route.

In terms of the legal aspects, it's fairly simple. In the UK, children are considered to be people and have their own human rights. The law is focused on parental responsibility, not parental rights. In this case the parents' wishes would have offered no benefit to Alfie and potentially inflicted even further suffering. The court ruled in his best interests. The end.

[TitanTiger 20,511]

10 hours ago, AUDub said:

From the perspective of his medical outlook, this fits the bill of “egregious and obvious.”

There was no therapy. None whatsoever. His brain was so damaged that 70% of it was just gone. You cannot magically make a new brain appear once it's been destroyed. It's as impossible as regrowing all your limbs once they've been cut off.

The therapy offered by the Italian hospital was cutting a hole in his neck and putting a breathing tube in his lungs so his body could be kept alive artificially, and a PEG tube for feeding. Both invasive surgeries, both dangerous in his condition at the time. Hell, even the Italian doctors agreed that attempting to move him from Liverpool to Rome would exacerbate his seizures, accelerate the rate of brain damage, and carry a high risk of him dying en route.

No, it doesn't.  Egregious and obvious is a situation of abuse.  Or where a parent is neglecting a child and withholding food.  Or where a parent is refusing to allow medical care to be administered.  It is not choosing to keep him on life support longer than the doctors in the UK wish to or moving him to a place where that can take place, even if in the minds of the UK doctors it might produce some temporary additional suffering.  

They can make the calculations on such things when it comes to health care dollars and rationing limited health care resources.  They should not get to decide if someone else can spend those resources and money however.

 

10 hours ago, AUDub said:

In terms of the legal aspects, it's fairly simple. In the UK, children are considered to be people and have their own human rights. The law is focused on parental responsibility, not parental rights. In this case the parents' wishes would have offered no benefit to Alfie and potentially inflicted even further suffering. The court ruled in his best interests. The end.

I understand what the legal aspects are, I am saying they are wrong.  The law should be changed to explicitly limit the scope of such authority.  The law in question originally came about for exactly the reasons I described - egregious and obvious issues of neglect or abuse.  It was enacted on the heels of a huge child abuse scandal in 1987 and amended after another case of abuse that garnered national attention in 2004.  But stretching it into this realm goes beyond the bounds that any state should have over families.