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Topic: State's authority over personal rights  (Read 1086 times)

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State's authority over personal rights
« on: April 25, 2018, 09:05:53 AM »
Ok. Not wanting to start an argument here, just want to understand the workings of what's going on regarding the little boy in the semi-vegetative state in the hospital. The one I see on the news where the state doesn't want to pay to treat any longer, as they say he won't get better, and who has had life-support withdrawn. Apparently the little guy, surprisingly, is breathing on his own. Not only does the state not want to fund treatment/care, but they want to prevent him from having any at all.

The parents want to take him to a foreign country for further care. Private funding is available to do this. There is appropriate transportation arranged. The foreign country (in this case Italy) has made the boy a citizen to facilitate his care there. The Vatican backs the further care. There is a hospital in Italy ready to receive the boy. Apparently he is in no pain.

The English courts are saying he can't be removed from the country for further treatment, based on the fact that his brain won't regenerate and that further care is pointless.

Questions to help me understand the system here:

1) The state has more authority than the parents in the care of their child? (Really???)

2) If the parents were on private-pay treatment, would this issue have arisen?

3) The judge says his "no travel" ruling is based on the condition of the boy's brain being irretrievably damaged. There is some scientific literature about brains repairing themselves, especially in very young children. The brains of patients who have a hemispherectomy (sp?), for example - one side of the brain is removed entirely, say in a case of intractable epilepsy - show that the remaining brain tissue takes over the functions, to a great extent, of the lost portion. Neuroplasticity (sp?).  So, literally, they can take half your brain out and you can still live a relatively normal life. It's also very recently been shown that the brain can regrow neurons. One has to wonder about the condition of the little boy's brain. It's never really mentioned - they don't say to what degree it's deteriorated. Is it gone to basically oatmeal in there, or is there anything left? In either event, what bearing does that have on the family's rights to keep him alive?

4) If this were a Catholic country, such as Ireland or Italy, would this issue be arising? If memory serves from my days of reciting catechism rules while wearing those itchy wool kneesocks and uniform, the party line is that life is sacred so you have to do everything you can to keep someone alive. (Hence the Vatican and Italy being so willing to help in this case.) So, by England being a protestant country, are the judges pushing back against that in some way when making their ruling in this case?

5) The little boy is obviously seriously, critically disabled. At what point does the state have the right, in English law, to determine if your life is worth continuing - at what point does being disabled truly become a death sentence? Stephen Hawking was kept alive because he obviously had stellar brain function. Is the cut-off point where you are not able to communicate at all with the external world? What happens to people with "locked-in" syndrome - they are "in there" but unable to let you know they are aware? (Until recently, when fMRI and other brain activity analysis tests were able to show that some locked-in people could answer questions by making specific areas of their brain light up in the scanner - showing they knew what was going on and could still think, to some degree.)

5) There is a lot I like about the general "hive" mentality of the culture here in the UK. But, at what point does the hive really have life-and-death decision rights over the people who live here, if they have living close relatives?  I have to consider: if the Daughter was critically ill or had been badly injured, and her known wishes were to be kept alive at all costs, as long as I (her family) wanted to honor those wishes and could pay for her care, could the courts step in and say "no", you have to euthanize her?  Or do the courts only step in on cases where the critically ill person is a minor?

It really does matter, knowing.
« Last Edit: April 25, 2018, 11:04:09 AM by Nan D. »


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Re: State's authority over personal rights
« Reply #1 on: April 25, 2018, 09:32:34 AM »
This isn't the first case like this that I'm aware of.

It makes me quite fearful as a parent, if I'm honest.  I truly do not understand why the family is not allowed to take him to Italy. 


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Re: State's authority over personal rights
« Reply #2 on: April 25, 2018, 10:20:42 AM »
As I understand it, in a case where the doctors are saying there's no possible benefit in treating the child, but the parents disagree and want to continue treatment, the court has to decide which way to go, and British courts generally favor the opinion of doctors.

So, for example, if you had a case where parents didn't want to let their child have a blood transfusion - even though the transfusion would save the child's life - a hospital could take them to court and the court could allow the hospital to treat the child against the parents' wishes.

Same thing applies in this case, but going the other way. The hospital's opinion is there's no point to treating the baby, and doing so would just prolong his suffering. The parents disagree, but the court has ruled against them.

It seems completely unfair to me, and I can't imagine how horrible it must be for the kid's parents not to be allowed to at least try to get him some help.

There's a pretty good explanation here: http://www.euronews.com/2018/04/24/alfie-evans-4-questions-answered
« Last Edit: April 25, 2018, 10:21:55 AM by camoscato »


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Re: State's authority over personal rights
« Reply #3 on: April 25, 2018, 11:01:11 AM »
Thanks, I'll read it soon.

It was my understanding that the boy was not suffering - he was not feeling any pain. So I'm not sure I understand the logic in the court's decision.

I am also concerned as to if this sort of intervention in what in the USA is a private matter can happen to families where the patient is an adult, or if it's solely applied to cases where the patient is a minor.


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Re: State's authority over personal rights
« Reply #4 on: April 25, 2018, 11:03:17 AM »
This isn't the first case like this that I'm aware of.

It makes me quite fearful as a parent, if I'm honest.  I truly do not understand why the family is not allowed to take him to Italy.

Yes, and in at least one case the parents became fugitives by removing the child to another country for treatment. Where he received the treatment and was, apparently, cured!  I really do not understand why the courts would block treatment that could potentially be of benefit. Especially, if you want to think of life in pounds and pence, if it's not going to cost the UK anything.


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Re: State's authority over personal rights
« Reply #5 on: April 25, 2018, 11:22:51 AM »
From camo's linked article:

"...there are no clear statutory tests. It’s dealt with on a case by case basis with judges deciding what is in a child’s best interests."

Courts are brutal places. Given the nature of the Constitution, and an area where legislators would struggle, it comes down to a person in a robe making a decision - using perhaps antiquated case law.

Build your opponent a golden bridge to retreat across - Sun Tzu


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Re: State's authority over personal rights
« Reply #6 on: April 25, 2018, 03:10:40 PM »
Yes, and in at least one case the parents became fugitives by removing the child to another country for treatment. Where he received the treatment and was, apparently, cured!  I really do not understand why the courts would block treatment that could potentially be of benefit. Especially, if you want to think of life in pounds and pence, if it's not going to cost the UK anything.

Nan, maybe you weren't around when some of these cases hit the headlines but when it happens there is a LOT of misinformation about. 

For example, I think you are referring to Ashya King as the kid whose parents became fugitives for taking their child out of the country.  I'm sure a lot of people would like to remember it as you have told it - "they took him to another country where he received treatment and was cured".  If you read the link below, you'll see that in fact it was nothing like that.  Ashya was already cured by the NHS and his parents didn't take him anywhere for continued treatment but rather took him to their holiday house in Spain, most likely because of their bizarre religious beliefs.  The doctors would have sent him to Prague if he needed it, but he didn't.

https://www.independent.co.uk/voices/comment/ashya-king-this-story-isnt-quite-what-it-seems-9716486.html

These cases always break my heart because they end up being completely abusive to the hospitals and doctors who are actually working hard to save real children's lives.  Inevitably, there's an army of keyboard Warriors who believe anything posted on Face Book who do a lot of damage in real life.  Like storming the hospital.  The parents (or somebody) even asked people on Face Book to set off the fire alarms:

http://metro.co.uk/2018/04/23/alfie-evans-supporters-storm-alder-hey-hospital-life-support-switched-off-7490651/

Soon we'll see the money grubbers come to town to exploit the parents for their share of the donations.  Remember that dodgy "researcher" who tried to get money from the parents of Charlie Gard?  The real Doctors had to spend days with him even though they knew in the first few minutes he was a charlatan. 

Don't believe everything you read on the internet.



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Re: State's authority over personal rights
« Reply #7 on: April 25, 2018, 04:19:32 PM »

Now you've got me reading a little further into this case and it just gets worse.  They turned off the life support and his parents are doing some amateur doctoring on him:

"Mr Evans revealed that Alfie had at times needed to be helped with his breathing, telling reporters: ‘At some point I had to give him mouth-to-mouth because his lips went blue and he was really fighting with his breathing so me and his mum were giving him mouth-to-mouth.’" 

https://uk.yahoo.com/news/parents-alfie-evans-set-appeal-high-courts-ruling-cannot-travel-italy-treatment-074523619.html

What's next CPR?  That doesn't sound like a painless life to me. 

It seems to me that what is happening is that the court is judging things with the primary concern being what is best for the child.

Nan and Comascato's posts are looking at it from the point of view of the parents.  The parents should have the right to fight for this kid to live. 

I have to say that I agree with the courts, I can't see any benefit to the child in flying to Italy and being kept alive as a vegetable indefinitely.   I feel sorry for the parents, but thier desires do not trump what is best for the kid. 


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Re: State's authority over personal rights
« Reply #8 on: April 25, 2018, 05:15:34 PM »
Nan and Comascato's posts are looking at it from the point of view of the parents.  The parents should have the right to fight for this kid to live. 

I have to say that I agree with the courts, I can't see any benefit to the child in flying to Italy and being kept alive as a vegetable indefinitely.   I feel sorry for the parents, but thier desires do not trump what is best for the kid.

I can see validity in both arguments. I don't think there's a way to decide cases like these that will please everyone.


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Re: State's authority over personal rights
« Reply #9 on: April 25, 2018, 05:31:44 PM »
Now you've got me reading a little further into this case and it just gets worse.  They turned off the life support and his parents are doing some amateur doctoring on him:

"Mr Evans revealed that Alfie had at times needed to be helped with his breathing, telling reporters: ‘At some point I had to give him mouth-to-mouth because his lips went blue and he was really fighting with his breathing so me and his mum were giving him mouth-to-mouth.’" 


Whichever side of the fence you are on, that is deeply disturbing.
March 28th 2013-Moved to UK, husband on spouse visa.Oct 20th 2015-Applied by mail for FLR(M).Feb 1st 2016 FLR(M).March 7th 2018 ILR. YAY! March 21st NCS&JCAP appointment.


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Re: State's authority over personal rights
« Reply #10 on: April 25, 2018, 07:07:16 PM »
I can see validity in both arguments. I don't think there's a way to decide cases like these that will please everyone.


That's true.


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Re: State's authority over personal rights
« Reply #11 on: April 26, 2018, 03:00:20 AM »
Actually, I don't have, in the current case, a strong bias one way or the other. (Although my earlier posts could certainly be interpreted that way, if read through a given lense.)  I haven't read much about it at all, so what I know is only what they're saying on BBC4. At this juncture, I am simply trying to sort out the lay of the land.

How much control does the state have over individuals in this country? And does it depend if the individual in question is a minor or of full age?

Note: I have nothing against the medical profession in the UK - the nurses I have encountered to date have been wonderful. The doctors have been a bit underwhelming (and somewhat patronizing), and seem overworked - but with minimal sample size of meetings it's really impossible to form much of an opinion about them, logically or otherwise.

Note: I knew before moving here that medicine and medical care is, de facto, rationed due to costs. The NHS hasn't got a blank checkbook, pharmaceutical companies don't give their products away, and so there are cases where people are denied medication or treatment that could help them because of the cost. That's a trade-off inherent in a nationalized medical system (or any system, for that matter). They balance doing the best they can for the most people with the resources available.

Note: In no way do I advocate storming a hospital or interfering with the staff. I don't approve of picketing a hospital or health clinic for any reason. I might stand around outside a court with a sign if there was a hearing on something I felt strongly about, but people taking it to the hospital is inexcusable. There are other sick/injured individuals in there, the medical staff are trying to do their jobs, and families visiting are under enough stress already. Pulling a fire alarm could result in serious injury to or death of person(s) undergoing treatment. That's just nutzo, and deserves serious jail time.

But back to the original issue. How much control does the state have over people's lives here? The boy is a minor. Does that radically change the landscape?

There's very little detailed info that I've heard about the actual condition of this particular child. But then, that should be private information anyway, and not splattered all over the newspapers. The info I have is:

The hospital has told the court that it is their opinion that the little boy is incurable, with irreversible brain damage, and that he should be, in effect, allowed to die.

I have heard it stated on several occasions that he is not in pain, and not aware.

There are medical centers and countries willing to treat him, or offer him ongoing medical  support, according to his parent's wishes.

The NHS would be off the hook for the cost of the care, so cost is not an issue here.

A medical transport team was prevented from moving the little guy to the hospital in Italy.

They've pulled his tubes and he's breathing on his own.

That's all the "hard" info that I think is out there in the media (or was, as of last night, when I had the radio on).

[Digression - If I were in their situation, and the Daughter's brain was gone - if I'd seen the MRI scans/CAT scans/Pet scans that showed major voids in brain matter that she, as an adult, had no chance of regrowing - I'd consider that she was gone and tell them to pull the heroics and keep her comfortable for as long as she had. If it were me, I think I'd prefer that they slipped me a terminal mickey so that it was over more quickly and not wasting the resources. But that's my choice. The Daughter knows my wishes. I would not want to see the state interfering with them.]

I'm not this little boy's parents, and I do not know his precise medical details. (Nor should I, or any other member of the public. This should be private information.) What I see is the state is overruling the parents' wishes about the treatment of their child. I could understand a court being involved if the parents were refusing life-saving treatment. It would appear that their beliefs are that any indication of life in their child supports heroic intervention to keep that life alive. 

So, how is it that a court is involved here? And what does that say about government intervention in other areas of personal life in the UK? I am really trying to get my bearings in this culture.



« Last Edit: April 26, 2018, 05:05:42 AM by Nan D. »


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Re: State's authority over personal rights
« Reply #12 on: April 26, 2018, 04:48:08 AM »
And just generally musing:  :) And then a bit for Jimbo,

I remember a couple of cases in the States. Karen Ann Quinlan (I believe that's the name.) Beautiful young woman who took a misstep with drugs and alcohol and was in a "vegetative state". There was a massive court case, when her parents wanted to let her go. The state overruled them, and she was kept alive. She lived for 9 years, and there's no knowing if she had any real awareness or not, although I'd assume (and hope) not. Terry Schiavo's case, where they had scans showing her brain was, basically, liquid, was particularly hard to watch. There was a battle royale between her relatives as to keeping her alive or letting her go. In that case I can see the need for a court being involved - there were competing wishes within her very close family. Her husband said she would want to be allowed to leave, and her parents fought tooth-and-nail to keep her alive. She left no living will. Someone needed to make a decision. The courts did. (They discontinued life support.) It's a shame it went on so long.

The Proton Beam Boy case. I only heard about it as reported on the national US TV news (I rarely get my news off the internet  ;) ) The parents disagreed with the proposed follow-up  treatment and nicked off with the boy. Arrest warrants were put out for the parents & subsequently rescinded (with supposedly formal apologies after stories had been circulated claiming that the parents had seriously damaged the child's chance of a cure by choosing the proton-beam therapy over that recommended by the NHS). The boy is apparently cancer-free. I  otherwise am not tremendously familiar with the case. I've had to resort to wikipedia (which is a somewhat dodgy resource at best) https://en.wikipedia.org/wiki/Ashya_King_case

Charlie Gard. Such a sad case. I am entirely too familiar with mitochondrial disease. It can be just a devastating diagnosis.  It is my understanding that a hospital in the States had been given preliminary info on Charlie's condition and agreed to explore experimental treatment based on that preliminary assessment. When funds had been raised, a re-assessment of Charlie's condition showed he was then too far gone for that treatment to be useful. At that point his parents were thrown into the court battle scenario  that seems to have been similar to the current case. They wanted him kept alive, the hospital recommended to the judge that he be allowed to die. (I'd have hated to have been that judge. I assume it was one judge only, and not a panel.)

Then the Pope tweeted, and Trump tweeted (of course he did).  I've just looked the case up to refresh my memory, and tend (maybe naively)  to trust the BBC's reporting on these types of cases, so here it is for a refresher.  http://www.bbc.co.uk/news/health-40554462

I was curious about your "dodgy researcher", so I looked the guy up. He's no slacker. From the Columbia University faculty website: " Dr. Hirano serves as Chief of the Neuromuscular Division, Co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. He evaluated patients with myopathies and other neuromuscular disorders. Dr. Hirano's research focuses on mitochondrial diseases and genetic myopathies. He is participating in the clinical trial of idebenone for MELAS patients. Together with Co-Principal Investigators, Drs. Salvatore DiMauro and J.L.P (Seamus) Thompson, Dr. Hirano is co-directing the North American Mitochondrial Disease Consortium (NAMDC). Dr. Hirano serves on the NIH Therapeutic Approaches to Genetic Diseases (TAG) study section, Medical Advisory Committee (MAC) of the Muscular Dystrophy Association, and Scientific Advisory Board of the United Mitochondrial Disease Foundation." He's also an Elected member of the American Neurological Association and  Elected Fellow of the American Academy of Neurology. http://www.cumc.columbia.edu/mdphd/profile/mhirano

So, without seeing his CV, I can pretty much assume that this guy is "big guns", although I've seen bigger.  I see in some of the press that it took months for him to actually fly to the UK to examine Charlie. Had I not had years of experience working (on the admin side) with medical research professors, I'd think that maybe the guy was a shyster for not being intimately familiar with Charlie's records from the start.

There's two thoughts I have there. One is that mito specialists do not grow on trees, and this man probably has a staggering caseload of patients. In SoCalif, for instance, there were two heavy-duty mitochondrial specialists as of a couple of years ago. For all of SoCal. (The population of SoCal is closing on 23 million souls. Even with mito diseases being rare, that's obscenely short-staffed.) The second is that, unfortunately, I have seen absolutely stellar researchers, damn near saints, hamstrung by the clinical trials regulations, internal institutional research review boards, university/hospital governance boards, and the liability office people.

So, without knowing precisely what that researcher said in his communications with Charlie's family, I can't support branding  him as a "money-grubber". Especially in an internationally high-profile case such as little Charlie's. And it was  acknowledged very clearly by the research team as being an excruciatingly experimental treatment - that hadn't even been tested on mice. (This has to qualify for the "hail Mary" pass of all time.) 

It would be a mountain of paperwork and red tape to have that allowed to happen in a research/teaching hospital in the USA. When one is talking in very tentative terms about a treatment protocol that would be well outside the FDA's normal approval stream, and having to deal with the review boards, I don't see how there possibly could have been time.  (For reference, again, Wikipedia, my apologies) https://en.wikipedia.org wiki/Human_subject_research_legislation_in_the_United_States  More succinctly, it's not like they could have just picked little Charlie up and taken him to the States and Columbia Medical Center could begin such an unproven/unapproved treatment without literally months of prep time and a special dispensation from the feds. And that's all not free.

It's also not unusual for researchers to have a financial interest in the results of their research. Not all universities insist that any money made on a discovery/patent goes to the coffers of the university - it depends on the employment contract between the two parties, and the organization funding the research. Unis get funding to do their research from the government, pharmaceutical companies, corporations, and other sources. That's how the system works. Research brings in a LOT of money to a serious research institution. That equipment and the specialist researchers are extraordinarily expensive, so they need it. A smart researcher who has enough professional standing can make a tidy sum if they make a discovery and have a contractual interest in it. I note that Prof. Hirano divested himself of any financial interest in the proposed treatment. That doesn't scream that he was in Charlie's case for the money.

And this bit, in closing this too-long post: Back to the current poor boy. I don't consider a parent doing mouth-to-mouth on a child in breathing difficulty to be "amateur doctoring" at all. No more than doing the Heimlich maneuver on someone choking. But then, I don't think one necessarily has to have an advanced degree to know how to manage the basics. ;)

Maybe we should just move on to things that are not so very sad, and about which we can do absolutely nothing?
« Last Edit: April 27, 2018, 08:54:37 AM by Nan D. »


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Re: State's authority over personal rights
« Reply #13 on: April 26, 2018, 08:45:37 AM »
How much control does the state have over individuals in this country?

I think it is very important. There seems to be a general view that one should just get on with it - and as Pangloss says in Candide, "tend your garden"*. But in an instant like with this child, life can absolutely bash straight into philosophic concepts of rights and justice.

The general English convention regarding rights is that one is free to do whatever one chooses, as long as no law forbids it. On the surface it sounds good, but in reality, without a codified constitution, it jumbles everything together, leaving Parliament, the political system, to ad hoc determine rights. The rationale being that as Parliament is elected it is voicing the will of the people. This is true, and it's not. Lobbyists, influence of the powerful, etc...

I think again that the general idea here on this forum is that things are basically the same everywhere, with individual differences and social norms (often stereotype) accounting for perceptions of what it is to be British or American. But constitutional concepts of "rights" are very different here. There is no Article** defining parental/family rights. Or any right. 

* I think this is the key quote from Candide, not "all is for the best" in the "best of all possible worlds".

** The European Convention on Human Rights recognises these things, but allows a great deal of latitude specifically so that signatories can find a workable way to apply to national law.
Build your opponent a golden bridge to retreat across - Sun Tzu


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Re: State's authority over personal rights
« Reply #14 on: April 26, 2018, 11:21:05 AM »
Exactly. 

I know that in the States there is a mountain of case law to which a judge can refer - and on which appeals can be based. So, realistically, in a situation like this a judge really  isn't making a truly independent judgement call based on their own take of the situation. I have not looked at that here - we had specific reasons for relocating that override quite a bit of whatever is not within my comfort range and consideration of the legal system was well down on my list of concerns.

On the surface it appears that here information is presented to a judge and he deliberates and then issues an order, based on his personal opinion. Is that the case, actually? I honestly do not know. But one should know. Or rather, if later on we decide to ask to become citizens, we should know precisely what it is we are asking for. At present I consider myself a guest in the country, so I only have courtesy rights that are at the sufferance of the government/legal system.

There are so many things in the UK that are similar to the US that one tends to forget that it is NOT the US. I didn't have the foresight to examine the legal system here and do not know the literal extent of the powers of the state.  Smaller things than the terminally ill children cases have begun to pop into my field of vision now that we are settled in. I'm not terribly comfortable with that, so it's going to be a crash course in British civics, I think, in the near future. It's rarely ever a good idea to buy a pig in a poke.  8)
« Last Edit: April 26, 2018, 11:34:48 AM by Nan D. »


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