Baby Alfie. Public ignorance? Medical illiteracy?

[coffeebythelake]

Alfie Evans, British toddler who spurred a medical ethics debate, dies

Read the comments by posters. Enough said.

Medical professionals understand the futility of treatment. I think most would agree that withdrawing care and allowing the patient to die would be the humane, right thing to do. This should have been a decision made by the physicians with the parents, but unfortunately it was turned into a media circus involving the courts, the pope, and other outside interests. People just don't accept reality.

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[BigRedBeta]

PICU attending here, see stuff like this all the time, have a handful of frequent fliers on chronic ventilator support that on a bad day might not pass a brain death exam (typically bad neurodegenerative stuff like in this case) and yes, I frequently counsel on withdrawal of life sustaining therapies.

This sort of thing never happens here because we let the parents choose and go through the hoops of setting up home care, home nursing, and long term follow up for any kid that gets a trach. Not what I consider humane by any stretch and not what I would choose for my own child.

Neither system is better than the other, but I personally don't like the idea of the state being involved in the decision making process of ending life. If patients or parents reach that conclusion with their physician having laid out the options) it's one thing, but the state mandating it crosses a line for me ethically (also why I don't favor the death penalty).

 

[Gern Blansten]

Who pays for it? Is it sustainable? How many kids/adults in a vegetative state requiring 24/7 care is sustainable for an economy where health care is already strained? Not that long ago, these patients would have died a more humane death after a brief period of investigation to see if the condition was reversible. We would not treat our pets this way, but we do it to our loved ones and I'm not sure why.

 

[coffeebythelake]

i never understood this. the child has no cortical function, cannot experience pain, cannot recognize nor comprehend anything. this isn't life, if the only reason why they continue to persist is because their life functions are completely and irreversibly dependent on machines. keep them on these machines to what end?

well i think in the long gone era of doctor knows best, this would have been a non-issue.

now physicians and patients are supposed to be equal. whatever the patient wants they get. and they get it regardless of cost, time, resources.

i'd imagine if Alfie's parents had to foot the bill for any of this care, they'd pull the plug long ago

 

[deleted162650]

Neither system is better than the other, but I personally don't like the idea of the state being involved in the decision making process of ending life.

In general, I would prefer the government have as little say as possible in my life. But, if the state is footing the bill, then perhaps the ought to have a say.

 

[nimbus]

Who pays for it? Is it sustainable? How many kids/adults in a vegetative state requiring 24/7 care is sustainable for an economy where health care is already strained? Not that long ago, these patients would have died a more humane death after a brief period of investigation to see if the condition was reversible. We would not treat our pets this way, but we do it to our loved ones and I'm not sure why.

It’s our Judeo-Christian culture. Sanctity of life and all that.

 

[btbam]

Reminds me of the Jahi McMath case.

 

[spacegun]

Too controversial, not arguing for either, but it comes down to who you think should have the final say in pulling the plug on the child - the parents or the state.

People with different philosophies will come to different conclusions - liberals vs. conservatives, religious people vs. people who are not religious. It depends on your philosophy.

 

[Man o War]

Not arguing for either, but it comes down to who you think should have the final say in pulling the plug on the child - the parents or the state.

If the state is footing the bill, they deserve a say though, do they not?
I could barely stand to listen to Jahi McMath’s mother. Makes me sick what that child went through and continues to go through. Watching videos of her literally brings tears to my eyes.

 

[spacegun]

If the state is footing the bill, they deserve a say though, do they not?
I could barely stand to listen to Jahi McMath’s mother. Makes me sick what that child went through and continues to go through. Watching videos of her literally brings tears to my eyes.

I guess if they are footing the bill, then they deserve a say, but it gets into other issues.

"How much of a say should the state get vs. British citizens who are taxpayers and democratically voted to contribute to their health and health care system?"

"Even if the state does get a say, should the state get the final say?"

"Should the state get a say in every patient's health decision because in the British system don't they always foot the bill?"

"Why didn't the state just let Alfie go to Italy even if it was futile care or he died on the way, at least it wouldn't have caused this s***storm, and he would have died anyway?"

 

[deleted171991]

Neither system is better than the other, but I personally don't like the idea of the state being involved in the decision making process of ending life. If patients or parents reach that conclusion with their physician having laid out the options) it's one thing, but the state mandating it crosses a line for me ethically (also why I don't favor the death penalty).

I don't like the state being involved either. As in I don't like the state paying for futile treatments, just because the family can't accept reality. IMO, the second a patient is declared brain-dead by 2+ independent physicians, if the family refuses comfort care they should get billed for any further expenses.

It's all very nice and PC to spend billions on futile intensive care, but that's why medicine costs so much, that's why hospitals are getting squeezed, that's why healthcare is 20% of the GDP.

 

[deleted171991]

Too controversial, not arguing for either, but it comes down to who you think should have the final say in pulling the plug on the child - the parents or the state.

People with different philosophies will come to different conclusions - liberals vs. conservatives, religious people vs. people who are not religious. It depends on your philosophy.

My philosophy is very close to Salty's: whoever pays for the futile care gets to have the final say.

 

[spacegun]

My philosophy is very close to Salty's: whoever pays for the futile care gets to have the final say.

Glad you have a clear and concise philosophy, but like I said there are a bunch of other people with a bunch of other philosophies. Everyone thinks their philosophy is the right one and the best one. Everyone thinks everyone else is wrong. Even intelligent experts disagree. How do you get it all to work in a democratic society? I have no idea.

 

[deleted171991]

Glad you have a clear and concise philosophy, but like I said there are a bunch of other people with a bunch of other philosophies. Everyone thinks their philosophy is the right one and the best one. Everyone thinks everyone else is wrong. Even the experts disagree. How do you get it all to work in a democratic society? I have no idea.

It's very easy: everybody gets to pay for their idea. I am very tolerant of human stupidity, just not on my (e.g. public) dime. So, whenever we have a "philosophical" conflict that contradicts science, how about all these people put their money where their mouth is?

Democracy doesn't mean wasting other people's money (i.e. socialism). And taxes shouldn't be a form of public theft. Every cent of that money should be spent as if sacred.

 

[Man o War]

If we just patterned our medical decision making off of how the Amish decide who gets what, we wouldn’t have a collapsing health care system.
And most of us wouldn’t have jobs, so there is that.

 

[spacegun]

It's very easy: everybody gets to pay for their idea. I am very tolerant of human stupidity, just not on my dime.

Like I said, that's good your philosophy is very easy to understand, but others have their philosophy where money isn't the decisive factor. You believe they are wrong, they believe you are wrong.

And I have read Alfie's parents had a private jet and ambulance ready to transport him to Italy using money and resources that were donated to them from private and religious charities (I think have read somewhere they are Roman Catholic and even had the Pope appeal on their behalf), but the U.K. still did not allow them to fly to Italy. Similarly in Charlie Gard's case where the parents were willing to pay with their own and donated money, but the U.K. still didn't allow it. I guess money wasn't the decisive factor for the U.K. either.

 

[Gern Blansten]

Reminds me of the Jahi McMath case.

 

[IlDestriero]

Who pays for it? Is it sustainable? How many kids/adults in a vegetative state requiring 24/7 care is sustainable for an economy where health care is already strained? Not that long ago, these patients would have died a more humane death after a brief period of investigation to see if the condition was reversible. We would not treat our pets this way, but we do it to our loved ones and I'm not sure why.

Exactly. I’m all for peg and trach and 24/7 nursing, etc. etc. in these hopeless cases IF they’re paying for it. As soon as you want the public to invest millions of dollars into patients with zero chance of recovery and zero quality of life you’re crossing the line. I see a lot of futile care in the peds world.


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Il Destriero

 

[deleted162650]

Can someone explain why the NHS wouldn't let this kid go to Italy if in fact the parents had set everything up and secured their own funding for everything? If that's truly the case, it almost seems like a human rights violation to me to not let the parents do what they want with their own kid on their own (donated) dime.

 

[deleted171991]

Can someone explain why the NHS wouldn't let this kid go to Italy if in fact the parents had set everything up and secured their own funding for everything? If that's truly the case, it almost seems like a human rights violation to me to not let the parents do what they want with their own kid on their own (donated) dime.

Precedent. If enough people are allowed to piss on science, there will be pressure on the NHS to change its policies about paying for stuff like this. Same reason why they don't have drug advertisements on TV etc. 80/20. They get 80% of our care with 20% of the costs (I am exaggerating to make a point).

Also ethics. If science shows this is futile care, why not let nature follow its course and stop torturing the shell of a human? Just to let the family "feel better"? Gods bless them for having balls, in this idiotic "there is more than one truth" world.

 

[deleted162650]

Precedent. If enough people are allowed to piss on science, there will be pressure on the NHS to change its policies about paying for stuff like this. Same reason why they don't have drug advertisements on TV etc. 80/20. They get 80% of our care with 20% of the costs (I am exaggerating to make a point).

Also ethics. If science shows this is futile care, why not let nature follow its course and stop torturing the shell of a human? Just to let the family "feel better"? Gods bless them for having balls, in this idiotic "there is more than one truth" world.

I'm with you as far as this being futile care. It's not the decision I would make for my own child. But, this kinda runs against your own philosophy - whoever is footing the bill gets to make the decisions - right? NHS isn't out a dime. Parents and charity covering all costs, and the kid even leaves UK soil. Let them take their brain dead kid wherever they want.

 

[deleted162650]

Another thing I've noticed and found odd over the years: It always seems like the more religious/devout the family, the harder time they have letting someone go. If you are truly a believer, shouldn't it be easier to let someone move on to be with God? Never made sense to me. Why continue to torture someone here hooked up to all manner of machines in the unit and delay their eternal after life??

This coming from a Catholic btw.

 

[deleted171991]

Another thing I've noticed and found odd over the years: It always seems like the more religious/devote the family, the harder time they have letting someone go. If you are truly a believer, shouldn't it be easier to let someone move on to be with God? Never made sense to me. Why continue to torture someone here hooked up to all manner of machines in the unit and delay their eternal after life??

This coming from a Catholic btw.

People are hypocrites. 😉

Re: NHS, I applaud their thinking (the needs of the many outweigh the needs of the few, or the one), although, as a taxpayer, I would not be against anybody playing futile care on their own dime either.

 

[somedumbDO]

I have seen this ad nauseum at my peds hospital. If two doctors sign off that you have zero chance (zilch, nada, none) we as a society shouldn’t pay for this torture. Whatever happened to do no harm? If the family wants to pay for it... fine but it’s AMA for me...

 

[BigRedBeta]

. IMO, the second a patient is declared brain-dead by 2+ independent physicians

Patient is legally dead if this criteria is met, doesn't matter what the family says at that point. Declare it, give time of death, let them grieve for 45 minutes then pull the tube.

This kid managed to keep breathing after terminal extubation so different circumstances, although given a few more months would have had confirmatory brain death exam.

I see a lot of futile care in the peds world.
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Il Destriero

Guilty as charged, but feel free to come to my next family care conference and tell a family they can't keep going. We certainly explain the futility in a multitude of ways but if a family doesn't want to stop, we have no recourse. If anything these UK cases have made US Children's Hospitals more averse to saying no because of the inevitable publicity.

 

[deleted480308]

Precedent. If enough people are allowed to piss on science, there will be pressure on the NHS to change its policies about paying for stuff like this. Same reason why they don't have drug advertisements on TV etc. 80/20. They get 80% of our care with 20% of the costs (I am exaggerating to make a point).

Also ethics. If science shows this is futile care, why not let nature follow its course and stop torturing the shell of a human? Just to let the family "feel better"? Gods bless them for having balls, in this idiotic "there is more than one truth" world.

It might be the nhs jurisdiction to refuse to continue care but deny transfer is not...that’s the parent’s right

 

[VA Hopeful Dr]

It might be the nhs jurisdiction to refuse to continue care but deny transfer is not...that’s the parent’s right

I think the British Justice system disagrees (not my opinion, just pointing that out).

 

[drmwvr]

Another thing I've noticed and found odd over the years: It always seems like the more religious/devote the family, the harder time they have letting someone go. If you are truly a believer, shouldn't it be easier to let someone move on to be with God? Never made sense to me. Why continue to torture someone here hooked up to all manner of machines in the unit and delay their eternal after life??

I think the other element that may be in play in those cases you may be referring to is the hesitancy to be complicit in what they may see as euthanasia. They don't know the distinction between actively ending a life and allowing to die by removing extraordinary life support. That's where a competent chaplain's office or "office of spiritual care" or whatever come in.

 

[deleted480308]

I think the British Justice system disagrees (not my opinion, just pointing that out).

In a not so shocking turn of events, I don’t put a lot of stock in the govt that just forced a guy to watch his kid get unplugged when there was another hospital system willing to take him.

The “nah man, it’s cool, we can totally do this” doesn’t fly with me

 

[VA Hopeful Dr]

In a not so shocking turn of events, I don’t put a lot of stock in the govt that just forced a guy to watch his kid get unplugged when there was another hospital system willing to take him.

The “nah man, it’s cool, we can totally do this” doesn’t fly with me

I'm not sure how I feel about it, but it's quite literally within the NHS' jurisdiction to do what they did since a court said as much.

 

[anbuitachi]

In a not so shocking turn of events, I don’t put a lot of stock in the govt that just forced a guy to watch his kid get unplugged when there was another hospital system willing to take him.

The “nah man, it’s cool, we can totally do this” doesn’t fly with me

im guessing the other hospital system is looking for publicity. since they kids prognosis is pretty much zero unless someone somewhere has a magical cure that no one knows about..

 

[deleted480308]

I'm not sure how I feel about it, but it's quite literally within the NHS' jurisdiction to do what they did since a court said as much.

A court can say a lot of dumb things

Doesn’t make them true

 

[VA Hopeful Dr]

A court can say a lot of dumb things

Doesn’t make them true

True, but jurisdiction is determined by the courts so in this case the court said the NHS had jurisdiction which means legally that it does.

 

[deleted480308]

True, but jurisdiction is determined by the courts so in this case the court said the NHS had jurisdiction which means legally that it does.

A court can say local PD has jurisdiction over letting people sleep with my wife against her will.....that means literally nothing about of they actually do, it just means that they’ve decided to act like it anyway

I can decide I have jurisdiction over your fridge but if I come in and start making a sandwhich you will say I was wrong and should gtfo of your house

I’m in total agreement that the govt of that nation thinks they have jurisdiction to forcefully keep a guy from taking his kid to another hospital to continue life support. I’m just saying they are wrong and this is a great argument for the 2nd amendment

 

[VA Hopeful Dr]

A court can say local PD has jurisdiction over letting people sleep with my wife against her will.....that means literally nothing about of they actually do, it just means that they’ve decided to act like it anyway

I can decide I have jurisdiction over your fridge but if I come in and start making a sandwhich you will say I was wrong and should gtfo of your house

I’m in total agreement that the govt of that nation thinks they have jurisdiction to forcefully keep a guy from taking his kid to another hospital to continue life support. I’m just saying they are wrong and this is a great argument for the 2nd amendment

Yes but when a court decides it then it has the backing of law. When you decide it, it does not.

And given that jurisdiction literally means "the official power to make legal decisions and judgments", then the NHS can legally do whatever the court decided they can do.

Now morally this is a totally different conversation, but legally its quite straightforward.

 

[deleted480308]

Yes but when a court decides it then it has the backing of law. When you decide it, it does not.

And given that jurisdiction literally means "the official power to make legal decisions and judgments", then the NHS can legally do whatever the court decided they can do.

Now morally this is a totally different conversation, but legally its quite straightforward.

I get what you're saying.....but again, the govt deciding something is legal means literally nothing to me

 

[VA Hopeful Dr]

I get what you're saying.....but again, the govt deciding something is legal means literally nothing to me

There's no way that's true. If they decide that X is illegal, then if you do it it will matter to you - either in jail time or legal fees.

 

[deleted480308]

There's no way that's true. If they decide that X is illegal, then if you do it it will matter to you - either in jail time or legal fees.

I'd end up with far worse than just a fee if someone tried to unplug my kid when another hospital would take the transfer

 

[deleted171991]

A court person can say a lot of dumb things

Doesn’t make them true

Fixed that for ya.

 

[Chris42]

Money is going to dry up sometime.

We won’t have the luxury of family choices forever to continue futile care.

 

[PTPoeny]

I haven't read about the baby Alfie case but with Charlie Gard the courts ruled in essence that it was in his best interest to be allowed to die and not have ongoing invasive procedures. Allowing him to go somewhere else would not have alleviated the useless suffering the courts decided he was going through. I would guess this is similar. Hence why all the money they raised didn't matter. No government is going to allow someone to hurt a child just because they raised money to do it somewhere else.

 

[Ronin786]

I'd end up with far worse than just a fee if someone tried to unplug my kid when another hospital would take the transfer

From what I heard, the Italian hospital was going to put him in comfort care anyways and wanted some ridiculous sum of money for it as well. Pure money grab and inaccurate reporting.

 

[deleted480308]

From what I heard, the Italian hospital was going to put him in comfort care anyways and wanted some ridiculous sum of money for it as well. Pure money grab and inaccurate reporting.

Still dad’s call to approve the transfer, but I’m with you on not assuming benevolent intent from the other hospital. There was likely some benefit perceived to them...

 

[deleted171991]

I haven't read about the baby Alfie case but with Charlie Gard the courts ruled in essence that it was in his best interest to be allowed to die and not have ongoing invasive procedures. Allowing him to go somewhere else would not have alleviated the useless suffering the courts decided he was going through. I would guess this is similar. Hence why all the money they raised didn't matter. No government is going to allow someone to hurt a child just because they raised money to do it somewhere else.

Are you sure? Cough, New Jersey, cough.

 

[dannyboy1]

If we just patterned our medical decision making off of how the Amish decide who gets what, we wouldn’t have a collapsing health care system.
And most of us wouldn’t have jobs, so there is that.

This. Every time some doctor rails against “futile care” and “ unnecessary tests” it makes me wonder if they truly understand the implications. Most of us would be unemployed or on a severely reduced salary .....

 

[deleted171991]

This. Every time some doctor rails against “futile care” and “ unnecessary tests” it makes me wonder if they truly understand the implications. Most of us would be unemployed or on a severely reduced salary .....

“It is difficult to get a man to understand something, when his salary depends on his not understanding it.” (Upton Sinclair)

"The needs of the many outweigh the needs of the few. Or the one." (Spock)

 

[dannyboy1]

“It is difficult to get a man to understand something, when his salary depends on his not understanding it.” (Upton Sinclair)

"The needs of the many outweigh the needs of the few. Or the one." (Spock)

There are entire segments of the economy built upon unnecessary and futile care. Think about all of the cardiac devices placed in nonagenarians, artificial hips and knees in the morbidly obese, dialysis for every person who is barely alive, “vent facilities” for long term trach patients, at least 75% of every MICU in this country etc. there is no way to fix this problem without widespread devastation of this segment of the economy. Our politicians are incapable of making tough choices so I predict it will be kick the can down the road until we run out of road. Hopefully by that point I will be retired.

 

[Psai]

This. Every time some doctor rails against “futile care” and “ unnecessary tests” it makes me wonder if they truly understand the implications. Most of us would be unemployed or on a severely reduced salary .....

Not really

 

[chocomorsel]

Still dad’s call to approve the transfer, but I’m with you on not assuming benevolent intent from the other hospital. There was likely some benefit perceived to them...

When the Italian docs came and did their evaluation, they too decided that he had no cortical function and then declined the transfer from what I read. Otherwise the NHS would have let them go was my understanding.

 

[chocomorsel]

Can someone explain why the NHS wouldn't let this kid go to Italy if in fact the parents had set everything up and secured their own funding for everything? If that's truly the case, it almost seems like a human rights violation to me to not let the parents do what they want with their own kid on their own (donated) dime.

See my post about Italian docs declining the transfer above.