Alfie Evans and prolonging the inevitable

[AUDub 11,184]

I find the reaction of many conservatives in this country monstrous. So many ill informed, gravely immoral takes. The attack on the medical profession, science and reason. The very medical profession which the same people seek to utilize to prolong this child's life and unnecessary suffering. Most people commenting on this situation aren't using facts.

I’m going to put this extremely bluntly:

Alfie Evans will not recover. The place where his brain should be is now mostly water and CSF, and brain tissue does not grow back. At best, his body can be kept alive indefinitely through artificial means. Alfie’s brain does not have the ability to transmit any meaningful information, even were his neurons capable of generating it. He will never be able to think, be aware, love, hate or anything that makes someone human. Alfie Evans is nothing more than an empty shell.

There is no assumption that Alfie's death is inevitable. His death IS inevitable. And I don’t assume the doctors are making the decision in the best interest of the child. The doctors ARE making the decision in the best interest of the child. Palliative care is the only reasonable treatment in cases like this. There is no hope for recovery, only for delaying the inevitable while what’s left of Alfie withers and likely increasing his suffering moving him from place to place

The parents, understandably suffering immense grief, prefer this tortuous existence to “pulling the plug,” for lack of a better term.

I am not happy with the Holy Father tweeting about this, or with my fellow Catholics’ obsession with this case. This is a common problem in the culture wars, needlessly absolutizing complex cases.

What say you?

[AUDub 11,184]

This is an absolutely necessary read.

https://www.judiciary.gov.uk/wp-content/uploads/2018/02/alder-hey-v-evans.pdf

The first pages illustrate the hopelessness of Alfie’s situation, while page 19 onward show the judge’s reasoning. I believe the courts and the doctors have acted impeccably in this situation. 

[keoson7 28]

miracles can happen, if there will be one for Alfie, it better hurry...  I'm not happy with anything coming out of the Vatican lately,  but keep titheing, they still have sexual assault victims needing to be paid....

[kevon67 2,368]

3 hours ago, AUDub said:

I find the reaction of many conservatives in this country monstrous. So many ill informed, gravely immoral takes. The attack on the medical profession, science and reason. The very medical profession which the same people seek to utilize to prolong this child's life and unnecessary suffering. Most people commenting on this situation aren't using facts.

I’m going to put this extremely bluntly:

Alfie Evans will not recover. The place where his brain should be is now mostly water and CSF, and brain tissue does not grow back. At best, his body can be kept alive indefinitely through artificial means. Alfie’s brain does not have the ability to transmit any meaningful information, even were his neurons capable of generating it. He will never be able to think, be aware, love, hate or anything that makes someone human. Alfie Evans is nothing more than an empty shell.

There is no assumption that Alfie's death is inevitable. His death IS inevitable. And I don’t assume the doctors are making the decision in the best interest of the child. The doctors ARE making the decision in the best interest of the child. Palliative care is the only reasonable treatment in cases like this. There is no hope for recovery, only for delaying the inevitable while what’s left of Alfie withers and likely increasing his suffering moving him from place to place

The parents, understandably suffering immense grief, prefer this tortuous existence to “pulling the plug,” for lack of a better term.

I am not happy with the Holy Father tweeting about this, or with my fellow Catholics’ obsession with this case. This is a common problem in the culture wars, needlessly absolutizing complex cases.

What say you?

This fellow Catholic agrees.

[AUDub 11,184]

3 hours ago, keoson7 said:

miracles can happen, if there will be one for Alfie, it better hurry... 

If I were to put myself in the shoes of Alfie’s mom and dad, the decision would not be a difficult one, thoug it would be immensely painful. I understand that pain. But, while I won’t claim to be an expert in neurological disorders, I know where the point of no return is. I deal with palliative care cases routinely. There’s is no hope here. No straws to be grasped. The jackasses like David French and his ilk, who offer false hope of a miracle, need to read the link I posted above. There is no possibility for a happy ending here. This judge may be a layman when it comes to bioethics, but he is no fool. The doctors are correct. His judgement is correct. 

At some point, it goes from being a matter of my child’s welfare to my own, and keeping them on life support unnecessarily would be not for my child’s comfort, but for my own selfishness.

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I'm not happy with anything coming out of the Vatican lately,  but keep titheing, they still have sexual assault victims needing to be paid....

K.

[TitanTiger 20,511]

I get the British government refusing to prolong his life with expensive treatments that they ultimately believe will not work.  It's troubling to me though that a family is being barred by government from taking their son out of the country to allow another hospital to evaluate him and perhaps attempt some other treatments though.  That's what seems heavy handed to me.  It's one thing to say that health care dollars have to be managed and spent wisely and we cannot authorize indefinite care for someone who has no chance of recovery.  It's entirely another to say, "you cannot, even on your own dime or someone else's, have your child re-evaluated in person by other doctors/hospitals."

I mean, they want to take him to Italy.  It's not like they're asking to haul him off to some witch doctor in Tanzania to have various tortuous treatments attempted on him.

[80Tiger 903]

15 hours ago, AUDub said:

This is an absolutely necessary read.

https://www.judiciary.gov.uk/wp-content/uploads/2018/02/alder-hey-v-evans.pdf

The first pages illustrate the hopelessness of Alfie’s situation, while page 19 onward show the judge’s reasoning. I believe the courts and the doctors have acted impeccably in this situation. 

So why are you stopping there. Just euthanize him right now. Why wait. Oh I also read there are some terminally ill people in England so lets put them down now. No need to wait or try anything else. I also read where there were some children born with some serious health issues that are terminal. Maybe not in the next few months but certainly within a few years. Gotta get rid of them also. And if any of their parents try to take them somewhere else for treatment, I hope there is a judge somewhere that know what is better for them than they do themselves and shuts them down.

 

My gosh what is happened to society.

[AUDub 11,184]

2 hours ago, TitanTiger said:

I get the British government refusing to prolong his life with expensive treatments that they ultimately believe will not work.  It's troubling to me though that a family is being barred by government from taking their son out of the country to allow another hospital to evaluate him and perhaps attempt some other treatments though.  That's what seems heavy handed to me.  

The other hospitals are not going to try and do anything other than keep him on life support. Most of Alfie's brain is gone. They cannot fix that. It is physically impossible. You cannot regrow brain matter. It is like saying they will try to regrow a missing leg on an amputee. This damage can not be cured.

From my earlier link. Page 6.

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Professor Cross concluded that Alfie has a progressive, ultimately fatal neurodegenerative condition, most likely a mitochondrial disorder. During her cross-examination by F she told him in gentle terms that even if it were possible to stop Alfie’s seizures, which did not look likely given his poor response to anticonvulsant treatment to date, his brain is entirely beyond recovery. The brain she said, again on F’s enquiry, simply has no capacity to regenerate itself unlike e.g. the liver. She agreed that nobody knew quite why the brain does not have the ability to do so but it is simply acknowledged by neurologists that it cannot. F, who has been representing himself and his partner during this case for reasons which I will address in detail, followed this observation up by enquiring whether given that Alfie’s brain has not yet (at his age) fully formed it might generate as oppose to regenerate brain matter. That was just one of F’s many thoughtful and impressive questions of the medical experts. Sadly, it drew a negative response. The brain would only be able to generate further from existing matter.

Professor Cross was an independent expert brought in to review the case and give an expert opinion. She is not on Alfie's care team but she had access to examine him:

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In the light of the parents real and entirely understandable concern about the underlying neurological diagnosis, Professor Judith Cross was instructed independently to review the clinical history, the EEG’s and the serial MRI’s. I shall turn in more detail to the MRI scans shortly but it is beyond doubt that they confirm a ‘rapidly progressive destructive brain disease’. Professor Cross is presently the Prince of Wales’ Chair of Childhood Epilepsy at UCL - Great Ormond Street Institute of Child Health. She is also Honorary Consultant in Paediatric Neurology. She reviewed Alfie at the PICU on 15 June 2017.

Quotes regarding the doctors willing to take him.

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The parents have, both in the course of these proceedings and in preparation for them, explored opportunities for alternative opinions. In particular they have instructed, through their solicitors who were acting at the time: Dr Martin Samuels (Consultant Respiratory Paediatrician); the Senior Clinical Team at the Ospedale Pediatrico, Bambino Gesu (BG) (Rome); Dr Matthias Hubner, Medical Director, Pediatric Air Ambulance, Amtsgericht Munchen; Professor Nikolaus Haas, Medical Director, Department of Paediatric Cardiology and Intensive Care, University Hospital Ludwig-Maximilians university (LMU) Munich.

It is recognised that all the doctors have come to the conclusion that Alfie is suffering from a neurodegenerative disorder. Nobody knows what triggered or caused this devastating erosion of Alfie’s brain, there is no diagnosis and there may never be. The fact remains however that all agreed the degeneration is both catastrophic and untreatable.

From Professor Haas (one of the doctors willing to take him in Germany):

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there are by all means no thinkable treatment options available that would stop or reverse his underlying disease

Bambino Gesu's plan for his treatment.

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F presses for Alfie to be permitted to travel to the BG hospital (Rome) and provided with a tracheostomy and PEG feeding. He argues, if that proffers no solution, there should be a further transfer to the Munich hospital. If that too fails F says that Alfie should be allowed home to die when he decides to”.

In support of this F places reliance on the BG report dated 12.09.2017. I have referred to the analysis in the BG report above but notwithstanding their conclusions, they proffer a treatment plan which is very different to that advanced by the Trust. It is set out in the following extract from their report: “It is therefore possible that a prolonged ventilator support, with surgical tracheostomy should be performed. Feeding and hydration are artificially provided through a nasogastric tube since several months, a clear indication for a gastrostomy is evident.

They would give him a trach rather than intubation and change the method of feeding. They would allow the parents to choose when to end life support. That is the difference in care plans. They are not going to try to cure him.

The question at that point becomes, is imposing the burden of travel for the benefit of Alfie or his parents? Travel is not going to be easy here. That sort of flight would be done in an EMS configured Lear jet. Even if he is off the ventilator, he will be on critical medication drips and TPN, Lipids and/or Enteral Feedings. Flying a Critical Care Pediatric Patient is something military medicine doesn't train or equip for (the Pope has been said to have prepped a "military chopper") so it would depend on specialty trained civilian teams. The teams would need to prepared to reintubate Alfie in the air, have an infant capable ventilator with them and be trained in how to select the correct settings, initiate rapid intravenous therapy including starting intraosseous needles if needed, be prepared for tension pneumothorax , cardiac monitoring and electrical therapy (defibrillation, pacing) and more. For a case like this the team would most consist of an attending PICU physician, an RN with Flight Nurse specialty certification, a Certified Flight Paramedic, a Registered Respiratory Therapist and the pilots. It's not as simple as tossing a kid in a car seat on an airliner and going for a short jaunt. 

And it's extremely dangerous in Alfie's current state. Remember, his reaction to stimuli is to have a seizure, as revealed by his EEG monitoring.

The reasoning of the judges during one of the appeals.

http://www.bailii.org/ew/cases/EWCA/Civ/2018/550.html

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It required, however, to be considered in the context of Alfie's present condition and in particular that it was unsafe to discount the possibility that Alfie experiences pain, particularly surrounding his convulsions. Given that whilst the evidence pointing to this would be unlikely, it cannot be excluded.

The judge identified the obvious challenges to transporting Alfie, initially to Italy and possibly thereafter to Munich. He noted that away from intensive care, Alfie would be more vulnerable to infection and the maintenance of his anti-convulsive regime, (already of limited effect) risked being further compromised by the travel. The journey, the judge said, "self-evidently, will be burdensome." The judge rightly faced up to the worst of all possible outcomes, saying, "Nobody would wish Alfie to die in transit." The judge even then did not rule this out as an option, considering the potential present risk, and saying in terms that the risk "might be worth taking" if there were any prospect of treatment, but there is none. It was that that the judge found irreconcilable with Alfie's best interests. The judge therefore held that "All this drives me reluctantly and sadly to one clear conclusion. Properly analysed, Alfie's need now is for good quality palliative care."

 

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It's one thing to say that health care dollars have to be managed and spent wisely and we cannot authorize indefinite care for someone who has no chance of recovery.  It's entirely another to say, "you cannot, even on your own dime or someone else's, have your child re-evaluated in person by other doctors/hospitals."

There is no further evaluation to be made.

There have now been two hearings in the High Court, two appeals, and consideration by the UK Supreme Court and European Court of Human Rights. Nowhere will you see the cost of Alfie's treatment being used to justify the withdrawal of treatment by anyone. It is frustrating to see people lazily assuming that's why the decision was taken. It isn't the judge's money, and it isn't the judge's kid, which is why the whole point of courts in the Western world is to listen carefully to both sides and act in Alfie's best interests.

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I mean, they want to take him to Italy.  It's not like they're asking to haul him off to some witch doctor in Tanzania to have various tortuous treatments attempted on him.

Hope I’ve provided some clarity on the matter. 

[NolaAuTiger 3,295]

Can you explain it to me in lay terms? What happened and how some conservatives have responded? @AUDub 

 

[AUDub 11,184]

Alfie was born seemingly healthy but was noted to have developmental delays fairly early on. At 6 months of age, he was MRId and a neurological disorder was indicated. Two weeks after the MRI he was admitted to the hospital with a respiratory virus and what was believed to be febrile convulsions (fever induced seizures). His seizures worsened. The seizures were epileptic in nature, not febrile. Neurology was consulted. EEG monitoring was ordered and he was put on anti-convulsive drugs. His condition worsened. He had pneumonia and severe encephalopathy. He coded. His care team prepared his parents for the worst. Extraordinary work by the care team saved his life.

He fought off the infection. However, his EEG exams did not show improvement and have largely remained the same since that time. He is in a coma. 

An external review of his charts was ordered. His EEGs show no activity except when he is seizing since January of 2017. His MRIs reveal a progressive degenerative neurological disorder. His brain is, as of now, mostly CSF and water where his brain should be. To put it bluntly, the seizures have liquified much of his brain, and that continues every time he has a seizure. Even if it was possible to stop the seizures, and he has not responded well to a variety of top drugs meant to do just that, he will not recover. He has already lost too much. All experts who have seen his charts in depth agree his condition is "catastrophic and untreatable." His doctors have decided it is no longer in Alfie's best interests to continue care.

Alfie's parents, in their understandable distress, do not accept this. They have been seeking avenues to have him remain on life support. Their appeals have resulted in a lot of public outcry. Bambino Gesu, a Vatican run hospital, has offered to take him. 

The courts in the UK have weighed Alfie's interests against those of his parents, and decided it would be to his benefit to remain in the UK. 

Read the links i posted above. They'll tell you all you need to know about how the judge reached his decision. I have a hard time finding fault with his reasoning. 

[DKW 86 7,441]

17 hours ago, TitanTiger said:

I get the British government refusing to prolong his life with expensive treatments that they ultimately believe will not work.  It's troubling to me though that a family is being barred by government from taking their son out of the country to allow another hospital to evaluate him and perhaps attempt some other treatments though.  That's what seems heavy handed to me.  It's one thing to say that health care dollars have to be managed and spent wisely and we cannot authorize indefinite care for someone who has no chance of recovery.  It's entirely another to say, "you cannot, even on your own dime or someone else's, have your child re-evaluated in person by other doctors/hospitals."

I mean, they want to take him to Italy.  It's not like they're asking to haul him off to some witch doctor in Tanzania to have various tortuous treatments attempted on him.

Beat me to it. I understand the Doctors' view and the Court's view. But taking him to Italy is quite frankly none of their business. NONE. If he was staying in the UK, I totally support them. But they should not stand in the way of the parents taking him to Italy.

[TexasTiger 13,026]

8 hours ago, AUDub said:

Alfie was born seemingly healthy but was noted to have developmental delays fairly early on. At 6 months of age, he was MRId and a neurological disorder was indicated. Two weeks after the MRI he was admitted to the hospital with a respiratory virus and what was believed to be febrile convulsions (fever induced seizures). His seizures worsened. The seizures were epileptic in nature, not febrile. Neurology was consulted. EEG monitoring was ordered and he was put on anti-convulsive drugs. His condition worsened. He had pneumonia and severe encephalopathy. He coded. His care team prepared his parents for the worst. Extraordinary work by the care team saved his life.

He fought off the infection. However, his EEG exams did not show improvement and have largely remained the same since that time. He is in a coma. 

An external review of his charts was ordered. His EEGs show no activity except when he is seizing since January of 2017. His MRIs reveal a progressive degenerative neurological disorder. His brain is, as of now, mostly CSF and water where his brain should be. To put it bluntly, the seizures have liquified much of his brain, and that continues every time he has a seizure. Even if it was possible to stop the seizures, and he has not responded well to a variety of top drugs meant to do just that, he will not recover. He has already lost too much. All experts who have seen his charts in depth agree his condition is "catastrophic and untreatable." His doctors have decided it is no longer in Alfie's best interests to continue care.

Alfie's parents, in their understandable distress, do not accept this. They have been seeking avenues to have him remain on life support. Their appeals have resulted in a lot of public outcry. Bambino Gesu, a Vatican run hospital, has offered to take him. 

The courts in the UK have weighed Alfie's interests against those of his parents, and decided it would be to his benefit to remain in the UK. 

Read the links i posted above. They'll tell you all you need to know about how the judge reached his decision. I have a hard time finding fault with his reasoning. 

 

32 minutes ago, DKW 86 said:

Beat me to it. I understand the Doctors' view and the Court's view. But taking him to Italy is quite frankly none of their business. NONE. If he was staying in the UK, I totally support them. But they should not stand in the way of the parents taking him to Italy.

This. ☝️

[aubearcat 2,138]

RIH Alfie.  Eternal rest grant to him O Lord; and let perpetual light shine upon him. 

[AUDub 11,184]

5 hours ago, DKW 86 said:

Beat me to it. I understand the Doctors' view and the Court's view. But taking him to Italy is quite frankly none of their business. NONE. If he was staying in the UK, I totally support them. But they should not stand in the way of the parents taking him to Italy.

Alfie passed on last night. May the Lord bless him and keep him, and bring his parents comfort and clarity in this trying time. 

I mean, that is the issue, and a deeply troubling one. Should the state just stand by if what you’re doing to your child, even with the best of intentions, will simply increase their suffering and result a very unpleasant death? Parental authority is not absolute. States do have an interest in the welfare of their most vulnerable citizenry, and that’s the case here too. It’s why Child Protective Services is a thing. If even the most well meaning parents make a decision that will result in harm to their child, the state has an obligation to step in.

Alfie presented a difficult case. The courts had to balance what seemed reasonable against what his parents’ wishes were. What was proposed - insofar as they had a plan, consisted of “fly him somewhere to continue treatment”- was a course of action that would not have change the outcome but likely introduced extended pain and suffering. The state is saying, “Wait. Alfie is a UK citizen, and we can’t stand by and subject him to futile efforts that will won’t change the outcome and might cause him further harm.”

So the court weighed the possible outcomes:

1. Alfie remains in the hospital and receives appropriate hospice care. This includes drugs for his convulsions, pain and the death rattle that occurs naturally as carbon dioxide levels build, and also food and water. (This is how it was when my brother passed. I’ll never forget being in that room.)

2. During transport, he suffers continual seizures, as this was his only response to stimuli, and suffers an unpleasant death in transit.

3. Alfie remains on life support, either in Italy or Merseyside. Infection, such as sepsis creeps in. He develops painful ulcers and abscesses, as many folks on long term care do. Google sepsis if you want to see just how awful it can be. As his seizures  and convulsions continue, and the host of drugs he was on did not manage them well, the deterioration of his brain continues.

Yes, Alfie’s death was a forgone conclusion, but there is value in choosing the course that resulted in the least pain. And some deaths are less pleasant than others.

[AU64 10,122]

Coming to the US in the not too distant future.?   I mean, why keep elderly patients who are totally bedridden alive?     Looking at some ten year old stats, approximately 150,000 US residents were on permanent life support consisting of feeding tubes and other life sustaining methods. 

Mostly in this country is it seems the issue is whether the government or doctors will allow the devices to be removed. ...which seems to be the opposite of the case being discussed.  And in fact, there are cases where the government has taken over custody of a terminal patient to continue treatment contrary to the parent's desire.   

I'm thinking the British government is making many "terminal" decisions based on financial considerations and not because they are looking out for the well-being of the patient. ....otherwise, the government would mandate euthanasia for children with "defective births" who suffer all manner of painful problems and who will suffer from those problems their entire abbreviated lives.    Guess that may be where they are heading.......hospice type treatment for those who are unable to live without "heroic" assistance.....at any age.

[AUDub 11,184]

21 hours ago, AU64 said:

Coming to the US in the not too distant future.? 

Already here. Been here quite a while, in fact. In the vast majority of cases you can’t withdraw life support if the patient is not brain dead, but in some very complex cases the hospital can decide to do so if care is futile and the patient is suffering. Obviously, laws vary state to state and country to country, but we have ethics committees for a reason. The vast majority of these cases are not publicized like this one was, but it certainly happens here.

Story time.

There's little doubt this would have been the case with Jacob, my late brother. He was never brain dead, but there is no doubt the only care besides palliative would not have been to his benefit. His liver was gone. His body was raging with infection. He was either delirious or unconscious in the end. His gut swelled excessively with fluid. He was bright yellow. Even if we could have offered a partial  transplant, which, believe it or not, I did offer early on before his admission to UAB, there was no saving him by that time. His fate was clear. We could have kept him alive for a few more days on life support, but to what end?

My mom refused initially. She wanted heroic measures. Hell, in many ways I was compromised. Those last days, you wouldn't believe how much time I spent studying liver dialysis while hoping his infection could be beat back. That was just me beating around the bush, though. No matter how much I tried to tell myself otherwise, I understood what time of day it was. He wasnt dead yet, but death was in his immediate future no matter what. 

My dad (an RN, and divorced from my mother) and I sat her down. We explained the reality of the situation. In the end, we all agreed. We were all in the room when his pain was permanently alleviated.

But what if my dad and I hadn't been there? Should her word have dictated his treatment as he lay there and slowly died, machines breathing for him as his infection worsened and his body became more necrotic, rotting on the bed? I wouldn't wish that on anybody, and that's part of the reason I believe ethics committees need to exist. Emotional compromise is a thing, and someone needs to speak for the patient when they can't speak for themselves and the next person in line isn't thinking clearly.

We made the best of that time, though. One of my fondest memories is sitting in that room with him while he was still cogent, just me and him, and laughing at stand-up comedy on Netflix. I was so happy I was able to get his Xbox to work on the hospital guest WiFi. It involved internet connection sharing and a CoA laptop, which my boss, who is awesome, by the way, allowed me to take off campus for him.

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I mean, why keep elderly patients who are totally bedridden alive?

That depends, and these cases must be evaluated on a case by case basis. Not everyone who is permantly bedridden has naught but suffering in their future, and their wishes should be respected above all else.

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Looking at some ten year old stats, approximately 150,000 US residents were on permanent life support consisting of feeding tubes and other life sustaining methods.

That doesn't really tell you the whole story. I work with patients in dialysis, mechanical ventilation and NG tubes daily. It would be in error to say they can't have fulfilling lives. Little doubt in my mind this opinion is pretty much universal among people that work in healthcare.

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Mostly in this country is it seems the issue is whether the government or doctors will allow the devices to be removed. ...which seems to be the opposite of the case being discussed.  And in fact, there are cases where the government has taken over custody of a terminal patient to continue treatment contrary to the parent's desire.  

The end result would have been much the same here. The NHS did a damned fine job.

The chief difference is that Alfie's parents would have mountains of debt to deal with in this country.

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I'm thinking the British government is making many "terminal" decisions based on financial considerations and not because they are looking out for the well-being of the patient. ....otherwise, the government would mandate euthanasia for children with "defective births" who suffer all manner of painful problems and who will suffer from those problems their entire abbreviated lives.    Guess that may be where they are heading.......hospice type treatment for those who are unable to live without "heroic" assistance.....at any age.

Read the judge's ruling I linked earlier. Point out how many times the issue of cost is raised.

The UK has an independent judiciary. The judge is independent of the government, as is Alfie's care team. It's clear from reading it what concerns were paramount. Cost wasn't one of them. 

[AU64 10,122]

21 minutes ago, AUDub said:

The judge is independent of the government, as is Alfie's care team. It's clear from reading it what concerns were paramount. Cost wasn't one of them. 

That could be...but no one would be crass enough to formally use that as a reason in the decision so guess I'm skeptical ...

As for your personal story....that was tough...but something  from my family....my mother was in a coma (more or less) and had a DNR on her file at her request.   My sister was with her one night when the line went flat.....and she raised holy hell....crying and shouting at hospital officials demanding they take action immediately which they did and they revived her.  She spent another several months in the same bed only occasionally opening her eyes until she finally passed away after a total of 6 month.  So I don't know what works....but still think the parents should have had the right to take they child elsewhere for possible treatment.  

And I still wonder when more positive action is going to be taken against infants with serious birth defects against the will of parents?   Though some abortion procedures are carried out for this purpose so as you note....we are probably already there. 

[AUDub 11,184]

2 hours ago, AU64 said:

That could be...but no one would be crass enough to formally use that as a reason in the decision so guess I'm skeptical ...

Courts generally don’t give a damn about crassness, so forgive my outright dismissal of that line of reasoning. I found the judge’s stated reasoning excellent, personally.

Have you read the ruling? It isn’t long and it’s very enlightening. 

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As for your personal story....that was tough...but something  from my family....my mother was in a coma (more or less) and had a DNR on her file at her request.   My sister was with her one night when the line went flat.....and she raised holy hell....crying and shouting at hospital officials demanding they take action immediately which they did and they revived her.  She spent another several months in the same bed only occasionally opening her eyes until she finally passed away after a total of 6 month. 

That would infuriate me. My dad and I had a long talk about DNR (I’m his surrogate should he become incapacitated) and my wife both work in healthcare and have made it clear what our wishes are to each other. I’ll have the talk with my kids when they’re old enough to understand it too. 

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So I don't know what works....

Laws are a mishmash depending on locale. 

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but still think the parents should have had the right to take they child elsewhere for possible treatment. 

We disagree here and that’s alright. Parental, or hell, familial (next of kin) authority, which we’ve touched on, is very important, but I don’t believe it should be considered absolute. 

In an ideal world, parents would always have the best interests of their children in mind. That’s sadly not always the case. 

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And I still wonder when more positive action is going to be taken against infants with serious birth defects against the will of parents?  

I will never approve of anything mandating abortion. That’s a brutally authoritarian measure. It would be an outrageous violation of the bodily autonomy of the mother, and I personally find the abortion of babies with, for instance, Down syndrome, heinous.

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Though some abortion procedures are carried out for this purpose so as you note....we are probably already there. 

Nah. Not yet and likely never will be outside of extremely authoritarian states.

 

[kevon67 2,368]

2 hours ago, AU64 said:

That could be...but no one would be crass enough to formally use that as a reason in the decision so guess I'm skeptical ...

As for your personal story....that was tough...but something  from my family....my mother was in a coma (more or less) and had a DNR on her file at her request.   My sister was with her one night when the line went flat.....and she raised holy hell....crying and shouting at hospital officials demanding they take action immediately which they did and they revived her.  She spent another several months in the same bed only occasionally opening her eyes until she finally passed away after a total of 6 month.  So I don't know what works....but still think the parents should have had the right to take they child elsewhere for possible treatment.  

And I still wonder when more positive action is going to be taken against infants with serious birth defects against the will of parents?   Though some abortion procedures are carried out for this purpose so as you note....we are probably already there. 

Heart goes out to you as my mother had a massive stroke prior to an arterial procedure........after a few days was unable to respond to verbal commads.......she also had a DNR.........I personally refuse to have a machine do my living in ICU or after 2 weeks, a life sentence in a nursing facility.

[AUDub 11,184]

1 hour ago, kevon67 said:

Heart goes out to you as my mother had a massive stroke prior to an arterial procedure........after a few days was unable to respond to verbal commads.......she also had a DNR.........I personally refuse to have a machine do my living in ICU or after 2 weeks, a life sentence in a nursing facility.

I need to go ahead and put an Advance Directive on paper. 

I only want to be on life-sustaining treatment (intubated, ventilator) if there's a good chance I'll be able to return to a decent quality of life (able to be conscious, feel pleasure, interact with loved ones). Because I’m relatively young, I’ll specify that I'm fine with being on those things for a few weeks while people get a better sense of prognosis if things are murky, but if it goes on for more than 3-4 with still dismal chances, give me all of the fentanyl in the hospital.

Please feel free to treat me as a pull apart shop for folks that will need my organs. 

Oh, and under no circumstances listen to my mother.

[kevon67 2,368]

6 hours ago, AUDub said:

I need to go ahead and put an Advance Directive on paper. 

I only want to be on life-sustaining treatment (intubated, ventilator) if there's a good chance I'll be able to return to a decent quality of life (able to be conscious, feel pleasure, interact with loved ones). Because I’m relatively young, I’ll specify that I'm fine with being on those things for a few weeks while people get a better sense of prognosis if things are murky, but if it goes on for more than 3-4 with still dismal chances, give me all of the fentanyl in the hospital.

Please feel free to treat me as a pull apart shop for folks that will need my organs. 

Oh, and under no circumstances listen to my mother.

I dont mind HANGING around in a gross anatomy building for a good cause.?

 

[autigeremt 6,714]

This issue has always been complex to say the least. I tend to lean on the freedom of the parent to do as they see fit in a case like this. I believe the heavy hand of government is being shown here and it's a reason why I'm so against government making so many decisions for families and communities. 

[AUDub 11,184]

1 hour ago, autigeremt said:

This issue has always been complex to say the least. I tend to lean on the freedom of the parent to do as they see fit in a case like this. 

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.

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I believe the heavy hand of government is being shown here and it's a reason why I'm so against government making so many decisions for families and communities. 

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.

[TitanTiger 20,511]

1 hour 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.

But that simply makes him the property of the state, who has their own interests, biases and concerns that are not necessarily in line with Alfie's.

 

1 hour ago, AUDub said:

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.

If the doctors who diagnosed Alfie are correct and his brain is gone, then how much suffering would Alfie have really experienced with some prolonging of care for him, being moved, etc?  Do they know he has the requisite consciousness and ability to process pain to truly suffer from a move and continued life support?

[AUDub 11,184]

49 minutes ago, TitanTiger said:

But that simply makes him the property of the state, who has their own interests, biases and concerns that are not necessarily in line with Alfie's.

Hence the independent arbitration via the UK high court of family justice. In principle, the judge is not bound by the views of the physicians any more than those of the parents.

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If the doctors who diagnosed Alfie are correct and his brain is gone,...

His brain wasn't necessarily gone. Alfie was in a semi-vegetative state. He had no higher brain function, and never would. He was beyond recovery, but brain dead has a specific definition that doesn't really apply here.

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...then how much suffering would Alfie have really experienced with some prolonging of care for him, being moved, etc? Do they know he has the requisite consciousness and ability to process pain to truly suffer from a move and continued life support?

Page 9:

https://www.judiciary.gov.uk/wp-content/uploads/2018/02/alder-hey-v-evans.pdf
 

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24. Dr Samuels filed a report which was, as I have said, solicited by the parents. F required him to attend to give oral evidence. If I may say so I thought that was a proper course for F to take. However, Dr Samuels is very clear that Alfie’s prognosis is futile. He notes that BG describes him as being in a “semi-vegetative state” (my emphasis). For Dr Samuels the greatest concern was the possibility of any potential suffering that Alfie may be experiencing. He considered that the high quality intensive care that Alfie is receiving at Alder Hey could “sustain him for a long time”. He noted that there is the “potential for acute infection e.g. sepsis, or hypoxia relating to seizure to cause sudden deterioration and death”. Dr Samuels stressed, both in his report of 10 December 2017 an d in his oral evidence, that movement, light and sound can produce physiological change in Alfie for which he posited three potential explanations: basic reflex; seizure related activity; association with discomfort. Whichever was most likely Dr Samuels considered that the appropriate course was to offer palliative care to Alfie. This he considered would best be served by symptom management i.e. keeping Alfie comfortable and withdrawal of ventilation and intensive care. In his thinking the combination of the futility of Alfie’s life (i.e. the absence of any prospect of recovery) and the uncertainty of knowing whether Alfie is suffering were key factors.

25. Dr M in her report, dated 20 December 2017 (see para 5 above), sets out her conclusions and opinion. Though she amplified these in her oral evidence they remained essentially the same:

"My opinion, based on Alfie’s presentation, clinical deterioration and progression of his MRI scan appearances and the expert opinion of a number of paediatric neurologists is that Alfie has a progressive neuro-degenerative disorder from which there is no hope of recovery. This opinion is supported by clinical experts both within Alder Hey Children’s Hospital and from independent national and international experts who have reviewed Alfie. It also the consensus opinion held by the entire medical consultant body on the Paediatric Intensive Care Unit at Alder Hey.

It is my opinion (and that of my intensive care consultant colleagues), that Alfie has a poor quality of life. He is completely dependent on mechanical ventilation to preserve his life. He has no spontaneous movements, cannot communicate and continues to have frequent seizures. I believe that is it unlikely that Alfie feels pain or has sensation of discomfort but I cannot be completely certain of this since Alfie has no way of communicating if he is in pain or discomfort. I believe that given Alfie’s very poor prognosis with no possible curative treatment and no prospect of recovery the continuation of active intensive care treatment is futile and may well be causing him distress and suffering. It is therefore my opinion that it is not in Alfie’s best interests to further prolong the current invasive treatment. It would, in my opinion, be appropriate to withdraw intensive care support and provide palliative care for Alfie for the remainder of his life."

Keep in mind, though he wouldn't be able to feel pain in the same manner as you or me, if you've ever heard of something called the Glasgow Coma Scale, you're aware that response to pain is one of the lowest level brain functions, and he'd have to be completely and utterly brain dead to not feel any pain ever.