Something to get Real about: Baby Charles

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Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Mon Jul 10, 2017 9:22 pm

Not the band, but rather the baby in England with TERMINAL mitochondrial disease.

https://www.thesun.co.uk/news/3248426/c ... treatment/

Two key pragmatic and rational concepts BOTH violated in this episode:

1. Parents should be allowed to do whatever they want to with their POC (Product of Conception....not the right term exactly, just being sarcastic)

2. Gubments should not waste resources on the terminally ill.......whether old or young.

Health Policy: always bad when following the rule of the squeaking wheel.
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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Mon Jul 10, 2017 10:27 pm

It seems to me that the parents are in denial, which is understandable, given that their recessive genes combined to produce this disease in their child. They don't want to let him go, because they can't risk having another (unless, of course, they're abysmally stupid...which may be the case).

The treatment available in the US, which was mentioned as having been used on 18 patients, was never used on a patient with terminal mitochondrial disease, but another disease. The doctors who have been treating Baby Charles say the damage has already been done.
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
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Re: Something to get Real about: Baby Charles

Postby Lance Kennedy » Tue Jul 11, 2017 12:10 am

Totally agree with Nikki on this one. The parents are being extremely cruel in keeping the poor tyke alive to suffer, when there is no hope.

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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Tue Jul 11, 2017 4:26 am

Nikki: do you agree or disagree that the parents should be allowed to do whatever they want to with their child?

Lance: Nikki so far has said only that the parents are in denial, NOT that they are being extremely cruel. Most such terminal cases have no consciousness, even pain response, to what is going on around them. Not cruel at all. Its everyone who has no direct interest in the issue that feels pain.

Matt: what are you doing? (ha, ha!!!)

If this thread goes at all, I'll tell a story.
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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Tue Jul 11, 2017 5:00 am

bobbo_the_Pragmatist wrote:Nikki: do you agree or disagree that the parents should be allowed to do whatever they want to with their child?
I can't answer either way with the information I currently have, Bobbo. Here's why:
• I don't know enough about the British health care system. Is anyone being deprived of medical care due to this situation? Have all available avenues been explored? Appropriate specialists within the British system and from other countries?
• I don't know enough about Baby Charles' current condition. Is he in pain or discomfort? Is there brain activity, other than what autonomous functions may still be working? Or has he suffered permanent brain damage to the extent that he would require lifetime hospitalization?

In general, "my child" is not the same thing as "my house" or "my coffee cup." We don't talk about "possession" of a child; we talk about "custody." Courts have frequently stepped in when parents have not acted in the best interests of the child, for whatever reason. Nor am I referring simply to clear-cut cases of abuse. There have been cases where parents have attempted to force a vegan diet onto developing children, even after the court has intervened when a doctor has reported the children as being malnourished due to a lack of vitamins and minerals necessary for proper development. There have been cases where parents have attempted to deny medical care to their children, citing religious reasons, and the court has found them guilty of negligent manslaughter. So, I would never make a blanket agreement that "parents should be allowed to do whatever they want to do with their child." There are far too many stupid people in the world who, despite their stupidity, have managed to figure out how to reproduce.
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
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Re: Something to get Real about: Baby Charles

Postby Lance Kennedy » Tue Jul 11, 2017 5:02 am

Bobbo

This question is not one to be settled using objective data. This is a matter of personal opinion, and I expressed mine. Other people will have other opinions, and there is no clear cut right answer. So feel free to express your own opinion. I do not think that keeping a severely brain damaged child alive is humane, when it depends on intensive life support just to breath. The supposed 'hope ' from the experimental therapy is a chimera, because you cannot rebuild a damaged brain. But that is just my opinion.

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Re: Something to get Real about: Baby Charles

Postby Poodle » Tue Jul 11, 2017 7:38 am

This is not a case of being 'allowed' anything. It's the court stepping in to remove the burden (and concommitent future guilt) of a completely agonising decision from the parents who, understandably (but wrongly, in my opinion), will do absolutely anything to keep their child alive.

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Re: Something to get Real about: Baby Charles

Postby Pyrrho » Tue Jul 11, 2017 10:32 am

I can't explain it better than the judge:

http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

Sections 35-41 explain the reasons why the court can rule on this sad situation.
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Tue Jul 11, 2017 11:59 am

Nikki; I think you are dodging the question I put forth. Everything you say is valid...to some other question. "Should" hypotheticals are meant to do that. "Should" based on YOUR values.........not a reference to anyone else's values or "the law."
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Tue Jul 11, 2017 12:06 pm

Lance: what you said was: "The parents are being extremely cruel in keeping the poor tyke alive to suffer, when there is no hope." /// and you are "objectively" wrong on each point you make:

1 The parents are being extremely cruel in keeping the poor tyke alive to suffer /// could you at lest take out "extremely"? As stated, the tyke may not be suffering at all: insensate to the world around him. I don't know the condition involved here, but in most brain dead cases that sound similar==> there is NO PATIENT SUFFERING, because the patient is a vegetable. NO PAIN RESPONSE. What exactly is the suffering here? Contra: the parents are suffering and they are conscious and telling us the hows and what fors. Big difference. Did I mention they are the parents? THE LOVING PARENTS!!! But you disagree with their decision/desires that you claim is "just an opinion" but it doesn't match yours so you call them "extremely cruel." ................ pulease!

2. No hope?//// Again......the parents have hope. Hope by definition is irrational. So pessimistic you are. (Ha!)
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Tue Jul 11, 2017 12:10 pm

Poodle wrote:This is not a case of being 'allowed' anything. It's the court stepping in to remove the burden (and concommitent future guilt) of a completely agonising decision from the parents who, understandably (but wrongly, in my opinion), will do absolutely anything to keep their child alive.


This issue is EXACTLY and expressly about the parents being allowed to do what they want to do==>or not. Its what the word "allowed" means: with the permission of the Court. You assume future guilt instead of future anguish they did not do more to save the life of their child? You MANIPULATE the language to support your own value system. Shame on you.
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Tue Jul 11, 2017 12:24 pm

Pyrrho: always valuable to read actual court decisions, so thank you.

NOT relevant though to the OP posed. I am actually arguing for what "should be" which assumes its something different than what IS. The law. This OP is NOT a legal analysis. No shoulds in the law, only what will be, just as the judge/decision shows. Too much like Poodle, lots of double talk or meaningless talk in the decision though........all according to precedent. "The best interests of the child."==>TOTALLY MEANINGLESS. Whats really happening here is the Court imposing a societal norm on the couple that is in front of the court. What the court will/ and will NOT/ allow. Allow to happen.

The parents have a value they want to exercise. The court has the law it is going to apply. How/when should we determine when one value should apply but other conflicting values (the Law) will supercede or not? In this real life scenario...I'm advancing the notion that PARENTS, loving parents, should be greater deference than what the law allows. If the child is a vegetable...there is no suffering, no future, in fact==>nothing to be really protected. Its a default back to looking at the parents. The adult, live, conscious, thinking, feeling citizens before the court.

Why not let the parents values control? Now, here's the "reality" part: the parents merely have to pay for their irrational wants. If they can't pay, then the child gets disconnect from artificial support and sent home....or to the USA if that is the parents desire. Why not?

Now.........I recognize I am taking a minority position. Thats the whole point. And I know that other tough cases with many of the same elements of this case are nonetheless NOT the same as this case: eg, older kiddies, or different mental states and so forth.

As a legal matter: I agree with the Court 100%.
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Tue Jul 11, 2017 1:25 pm

As implied at the OP: what I'm trying to do is advocate for Maximum Individual Liberty while having some reasonable objective limitations on the chaos/anarchy that could evolve.

As the child in this case cannot speak for himself, he rather drops out of the equation as the LOVING parents are more affected than anyone else by decisions finally implemented. More affected than general society, and more affected than the child. Again: brain damaged children aren't "there" for most practical purposes.
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Re: Something to get Real about: Baby Charles

Postby Poodle » Tue Jul 11, 2017 2:48 pm

bobbo_the_Pragmatist wrote:Not the band, but rather the baby in England with TERMINAL mitochondrial disease.

https://www.thesun.co.uk/news/3248426/c ... treatment/

Two key pragmatic and rational concepts BOTH violated in this episode:

1. Parents should be allowed to do whatever they want to with their POC (Product of Conception....not the right term exactly, just being sarcastic)

2. Gubments should not waste resources on the terminally ill.......whether old or young.

Health Policy: always bad when following the rule of the squeaking wheel.


OK then, bobbo - back to what you actually said ...
Responding to your Point 1 above, do you REALLY think that parents should be totally free to do what they want with any child of theirs? Does that include eating the child, dropping it off a cliff, burning it alive? Well, of course it doesn't and you're going to jump to agree with that. But the moment you do, you're drawing a line of acceptability which contradicts your Point 1.
As for Point 2, I think (and others may agree) that palliative care is a very human thing to offer (the alternative being inhuman, IMO) and especially when the care has already been paid for. Don't fall for the line about the UK's National Health Service being free - it ain't. It's paid for every time any legally employed person in the UK receives a wage or salary - it's taken at source and is unavoidable. So it isn't the government wasting resources - it was never their money. Different countries, different methods, of course - but UK health care is NOT a free gift from the government.

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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Tue Jul 11, 2017 4:28 pm

bobbo_the_Pragmatist wrote:Nikki; I think you are dodging the question I put forth.
I'm not dodging the question. As I said, I don't have enough information about this particular situation to answer it.

bobbo_the_Pragmatist wrote:Everything you say is valid...to some other question.
The rest of my post was to illustrate the general point, and to make clear that I think objective ethics is a load of crap.

bobbo_the_Pragmatist wrote:"Should" hypotheticals are meant to do that. "Should" based on YOUR values.........not a reference to anyone else's values or "the law."
Which doesn't mean I have to answer the hypothetical with inadequate information. There are a myriad issues on which I have no opinion, because I lack a factual foundation from which to form one.
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
—Lazarus Long, from Time Enough for Love, by Robert A. Heinlein

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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Tue Jul 11, 2017 4:45 pm

Well Gee Whiz Poodle. I put the operative conditions, the pivot points, the guiding but competing and even contradictory concept in PRETTY COLORS............but you still missed it. Larger Type?

To your points:

1. Of course there are limits the the freedom of parents: "reasonable objective limitations on the chaos/anarchy that could evolve. In the OP I used "cost" as a limitation that also keeps the loci of responsibility on the Parents. MONEY to be spent is very objective. Not so with other issues that would arise. Perhaps not eating the child, but on the same curve we have families that want to eat the placenta? Well, you have me in a dilema as I don't want to simply dismiss your challenge. Homey don't play that way. "IF" we accept that there is no cruelty to the child because the child is an insensate vegetable..............then why not eat the kid if that was want the parents wanted to do? Can I use the near impossibility of such a desire as a shield to my position just as you use it as a spear? I think so. With the clarity that the parents cannot kill the kiddie in order to eat it, they can only eat it after it is dead. I mean: meat is meat.

Now, back to what you said: Its not presented, but in context I was thinking of the options/issues presented by the case. The freedom/permission to take the child home, or to America as the parents might desire. NOT eating the kiddie or dropping it off a cliff. Context Poodle. Everything in CONTEXT.

2. The issue of palliative care is not raised by the OP...as opposed to wasted resources on those legally dead or permanently vegetative and so forth. Again........you avoid the context of this case. It also is NOT about palliative care.

Does this reset the question?
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Tue Jul 11, 2017 5:01 pm

Nikki Nyx wrote:
bobbo_the_Pragmatist wrote:Nikki; I think you are dodging the question I put forth.
I'm not dodging the question. As I said, I don't have enough information about this particular situation to answer it.
But you do. You are stalling over unnecessary details. All you need to know is: the parents want to do X and the court says No. It doesn't matter what else you know or don't know. It doesn't matter what the parents know or don't know. All decisions are made with less than all the facts. You know: "Getting Real."

Nikki Nyx wrote:
bobbo_the_Pragmatist wrote:Everything you say is valid...to some other question.
The rest of my post was to illustrate the general point, and to make clear that I think objective ethics is a load of crap.
Ha, ha................you said: "objective ethics." An oxymoron for sure. Where is objective ethics raised or relevant?

Nikki Nyx wrote:
bobbo_the_Pragmatist wrote:"Should" hypotheticals are meant to do that. "Should" based on YOUR values.........not a reference to anyone else's values or "the law."
Which doesn't mean I have to answer the hypothetical with inadequate information. There are a myriad issues on which I have no opinion, because I lack a factual foundation from which to form one.
You are totally correct. but thats a dodge. Just what I called it. Some might call this a "minimum information hypothetical" where the respondent is called upon to provide the missing details. You know more than I do..........and I can and have easily answered the Hypo. Low level details do not overturn higher level values. The value at hand: ALLOWING PARENTS to exercise parental control over their kiddies. The morality is clear. It is THEIR kid.......and should be recognized more than it is as this case reveals. If the State were able to provide actual parental services to the kiddies then this kind of interference would be more tolerable. But the State is NOT so willing or even moreso able...so the State (Courts) should butt out, or aka: empower the parents within broad social norms.

Nikki Nyx wrote: There are a myriad issues on which I have no opinion, because I lack a factual foundation from which to form one.
And yet you call the parents are in denial? Something switched horses?
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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Tue Jul 11, 2017 8:03 pm

bobbo_the_Pragmatist wrote:
Nikki Nyx wrote:
bobbo_the_Pragmatist wrote:Nikki; I think you are dodging the question I put forth.
I did a bit of research on mitochondrial depletion syndrome and on Charlie Gard's current medical condition so I could answer you. First, though, I'm going to disarm one of your traps: Self-perceived emotional suffering does not constitute automatic elevation to the moral high ground. That misguided attitude has led us to people claiming they feel "unsafe" online, when in reality, they're in the safety of their own homes and merely overly sensitive and easily-offended. Funny how these people constantly insist that everyone else change their behavior, instead of doing the logical thing: closing the damn tab. So, kindly release that red herring back into the wild. Charlie Gard's parents do not automatically hold the moral high ground here.

Second, The Court of Human Rights ruled that “it was most likely Charlie was being exposed to continued pain, suffering and distress, and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.” On one side, we have the specialists who have been treating Charlie and experts in medical jurisprudence. On the other, we have hysterically emotional parents who are in denial of the facts, and who are, apparently, willing to value their own emotional needs so highly that they're apathetic to the suffering of their own child.

Third, the form of mitochondrial depletion syndrome that Charlie has is encephalomyopathic. His brain deterioration is progressive and unstoppable. By this past December, his brain function had already deteriorated past the point of no return. He was deaf, could not breathe, move, or open his eyes. His heart and kidneys were failing. And he was having seizures. Charlie's particular genetic form of encephalomyopathic mitochondrial depletion syndrome relates to defects in the gene coding of the RRM2B protein, which results in deformities of the brain.

Lastly, even if the drug treatment were to stop Charlie's disease in its tracks—improbable to the point of being impossible—the damage is already done. Irreversible brain damage, to be specific. What Charlie's parents will be left with is body in a vegetative state, not a child. Charlie will never be self-aware or have conscious experiences. He will not experience life. It will require an immense amount of medical resources to keep him alive, including life support for his heart and lungs, dialysis to replace his failed kidneys, intravenous feeding, round-the-clock monitoring by medical personnel, and probably quite a bit more that doesn't immediately come to mind. In this vegetative state, he might well outlive his parents. Given their inability to be rational, they might well produce additional offspring with this condition.

So, my answer is "no." I don't think they should be allowed to do what they want. Neither one is considering the well-being of their child; their fight is based solely on their own emotional needs.
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
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Re: Something to get Real about: Baby Charles

Postby Lance Kennedy » Tue Jul 11, 2017 8:19 pm

As I said before, there are no right and wrong answers here and it is all opinion. Bobbo has expressed his opinion which is fair enough. Just let me point out, though tnat his assumption that the child is nof suffering, is just that, an assumption. There are now many known cases of people first considered to be vegetables, and later found to be anything but. It is better to assume the victim can and does feel what is happening to him.

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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Tue Jul 11, 2017 9:08 pm

Lance Kennedy wrote:It is better to assume the victim can and does feel what is happening to him.
I agree wholeheartedly. If Charlie is unable to move, he may also have no reflexes, meaning he can't respond autonomously to pain tests, like pinpricks to his fingers or toes. It would require a nerve conduction test to determine whether his nerves were still firing, and even then, that wouldn't tell whether Charlie was experiencing the sensation as pain or not. Better to err on the side of caution.
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Wed Jul 12, 2017 12:19 am

Nikki Nyx wrote: Charlie Gard's parents do not automatically hold the moral high ground here.
You trapped the wrong fish. Charlie Gards parents hold the moral high ground BECAUSE they are Charlie Gards parents. Very simple, direct, and unique: its biological. The only people in the Universe to hold such a position/relationship.

Nikki Nyx wrote:Second, The Court of Human Rights ruled that “it was most likely Charlie was being exposed to continued pain, suffering and distress, and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.” On one side, we have the specialists who have been treating Charlie and experts in medical jurisprudence. On the other, we have hysterically emotional parents who are in denial of the facts, and who are, apparently, willing to value their own emotional needs so highly that they're apathetic to the suffering of their own child.
Yes...that is what such courts who want to cut off the EXPENSE OF FUTILE CARE say about the brain dead and the anencephalic vegetables before their court. "Let us kill you for your own good." Quite the Animal Farm going on here. I personally agree with such mandates , but I don't BS myself about who's interests are being served. Note: the same outcome would be reached by giving the parents autonomy ... but just making them pay for their own decisions. A win-win if you will. Add a third win if your imagination allows.

Nikki Nyx wrote:Third, the form of mitochondrial depletion syndrome that Charlie has is encephalomyopathic. His brain deterioration is progressive and unstoppable. By this past December, his brain function had already deteriorated past the point of no return. He was deaf, could not breathe, move, or open his eyes. His heart and kidneys were failing. And he was having seizures. Charlie's particular genetic form of encephalomyopathic mitochondrial depletion syndrome relates to defects in the gene coding of the RRM2B protein, which results in deformities of the brain.
What does this info relate to? Yes--Charlie is terminal with no hope of recovery. That is the basis of this discussion.

Nikki Nyx wrote:Lastly, even if the drug treatment were to stop Charlie's disease in its tracks—improbable to the point of being impossible—the damage is already done. Irreversible brain damage, to be specific. What Charlie's parents will be left with is body in a vegetative state, not a child. Charlie will never be self-aware or have conscious experiences. He will not experience life. It will require an immense amount of medical resources to keep him alive, including life support for his heart and lungs, dialysis to replace his failed kidneys, intravenous feeding, round-the-clock monitoring by medical personnel, and probably quite a bit more that doesn't immediately come to mind. In this vegetative state, he might well outlive his parents. Given their inability to be rational, they might well produce additional offspring with this condition.
Given the parents inability to pay for the care required, Charlie ain't living for long. You do recall the OP was a two parter?

Nikki Nyx wrote:So, my answer is "no." I don't think they should be allowed to do what they want. Neither one is considering the well-being of their child; their fight is based solely on their own emotional needs.
Its definitional. There is NO "well-being" of the child. Charlie is terminal, with no hope of reversal, with little and deteriorating brain function to begin with. In essence: Charlie drops out of consideration...for rational people. The same status as currently provided to embryo's within the first trimester. It is all a continuum of life and legal concepts. Its where we make certain demarcations and why that is the OP.

Nikki: thanks for your extra work. Its noted, and admired.
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Re: Something to get Real about: Baby Charles

Postby Pyrrho » Wed Jul 12, 2017 12:41 am

A story from the USA

https://www.statnews.com/2016/06/01/bra ... fda-fight/

Soon, Neil’s family was suing the Food and Drug Administration for the right to keep trying the new therapy. Late last week, the Fachons won, and Neil resumed the treatments.

The family drama comes amid growing tension — in Congress and across the US — about how far terminally ill patients can, and should, go in search of a miracle.

The FDA tries to protect patients from unproven remedies that might do more harm than good. But when a child has an incurable brain tumor, does the same cold calculus of risk and benefit apply?

“Neil wanted to be part of this research,” Wendy Fachon, Neil’s mother, told STAT. “What did he have to lose — his life?”

For his part, Neil said in an interview Tuesday that he has been focusing on staying upbeat, even amid the “crazy stress” of fighting the FDA for the right to try the infusions. “I’m thinking ‘What can I still do?’” he said. “I can hold my head up. I can keep the most positive spirit I can, and help my parents get through this the best they can. And that’s precisely what I intend to do.”


February 22, 2017:

http://www.providencejournal.com/news/2 ... tment-dies

Eugene “Neil” Fachon died Sunday, almost a year after being diagnosed while a sophomore engineering student at Northeastern University with diffuse intrinsic pontine glioma, or DIPG, an aggressive pediatric brain stem tumor. His family declined comment Wednesday, other than to say they were making arrangements.
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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Wed Jul 12, 2017 12:43 am

bobbo_the_Pragmatist wrote:
Nikki Nyx wrote: Charlie Gard's parents do not automatically hold the moral high ground here.
You trapped the wrong fish. Charlie Gards parents hold the moral high ground BECAUSE they are Charlie Gards parents. Very simple, direct, and unique: its biological. The only people in the Universe to hold such a position/relationship.
Disagree for the reason I stated: Self-perceived emotional suffering does not automatically elevate you to the moral high ground. Your logic doesn't parse; by your reasoning an abusive parent holds the moral high ground over the law preventing child abuse.

bobbo_the_Pragmatist wrote:
Nikki Nyx wrote:Second, The Court of Human Rights ruled that “it was most likely Charlie was being exposed to continued pain, suffering and distress, and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.” On one side, we have the specialists who have been treating Charlie and experts in medical jurisprudence. On the other, we have hysterically emotional parents who are in denial of the facts, and who are, apparently, willing to value their own emotional needs so highly that they're apathetic to the suffering of their own child.
Yes...that is what such courts who want to cut off the EXPENSE OF FUTILE CARE say about the brain dead and the anencephalic vegetables before their court. "Let us kill you for your own good." Quite the Animal Farm going on here. I personally agree with such mandates , but I don't BS myself about who's interests are being served. Note: the same outcome would be reached by giving the parents autonomy ... but just making them pay for their own decisions. A win-win if you will. Add a third win if your imagination allows.
It would not be the same outcome, because allowing the parents their way would prolong the child's suffering, according to the experts. That was the basis for their decision.

bobbo_the_Pragmatist wrote:
Nikki Nyx wrote:Third, the form of mitochondrial depletion syndrome that Charlie has is encephalomyopathic. His brain deterioration is progressive and unstoppable. By this past December, his brain function had already deteriorated past the point of no return. He was deaf, could not breathe, move, or open his eyes. His heart and kidneys were failing. And he was having seizures. Charlie's particular genetic form of encephalomyopathic mitochondrial depletion syndrome relates to defects in the gene coding of the RRM2B protein, which results in deformities of the brain.
What does this info relate to? Yes--Charlie is terminal with no hope of recovery. That is the basis of this discussion.
A prelude to my last paragraph as well as more proof that the parents are deluded. They would never get a child back, even if the treatment were successful; they would get an inanimate zombie.

bobbo_the_Pragmatist wrote:
Nikki Nyx wrote:Lastly, even if the drug treatment were to stop Charlie's disease in its tracks—improbable to the point of being impossible—the damage is already done. Irreversible brain damage, to be specific. What Charlie's parents will be left with is body in a vegetative state, not a child. Charlie will never be self-aware or have conscious experiences. He will not experience life. It will require an immense amount of medical resources to keep him alive, including life support for his heart and lungs, dialysis to replace his failed kidneys, intravenous feeding, round-the-clock monitoring by medical personnel, and probably quite a bit more that doesn't immediately come to mind. In this vegetative state, he might well outlive his parents. Given their inability to be rational, they might well produce additional offspring with this condition.
Given the parents inability to pay for the care required, Charlie ain't living for long. You do recall the OP was a two parter?
Then what's the point in allowing the parents their temper tantrum? It's clear they don't care about the child's well-being, only their own emotional needs.

bobbo_the_Pragmatist wrote:
Nikki Nyx wrote:So, my answer is "no." I don't think they should be allowed to do what they want. Neither one is considering the well-being of their child; their fight is based solely on their own emotional needs.
Its definitional. There is NO "well-being" of the child. Charlie is terminal, with no hope of reversal, with little and deteriorating brain function to begin with. In essence: Charlie drops out of consideration...for rational people. The same status as currently provided to embryo's within the first trimester. It is all a continuum of life and legal concepts. Its where we make certain demarcations and why that is the OP.
Charlie does not drop out of consideration if there is the possibility that he is experiencing pain. And that canNOT be ruled out.

bobbo_the_Pragmatist wrote:Nikki: thanks for your extra work. Its noted, and admired.
You're welcome, and thank you. :mrgreen:
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Wed Jul 12, 2017 12:52 am

Perhaps I spoke too soon?

...............................................No. The work is always to be admired. Conclusions drawn is a different issue.

Its not about moral high ground but rather legal position. The parents are unique...and prerogatives do flow from that status. The welfare of the child is a legal charade. If we can rule out miracles, we can rule out pain...or at least put it secondary to the wishes of the parents.

Each case/issue/context stands on its own. I agree as a general premises that too many bad parents keep custody. Its because SOCIETY can't really support all the thrown off kiddies that would result from such intrusive policies.

Its getting real, with a heavy coating of spin.
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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Wed Jul 12, 2017 12:58 am

bobbo_the_Pragmatist wrote:If we can rule out miracles, we can rule out pain...or at least put it secondary to the wishes of the parents.
Your opinion is not supported by the doctors who specialize in Charlie's disease and who have treated him, nor by the opinion of the Court, which made its decision based on those doctors' reasoned medical opinions. I'm unwilling to override that with my non-medical personal opinion. But you do you. :mrgreen:
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Wed Jul 12, 2017 1:13 am

I know........... the system is rigged. But IDEAS are free.

Of note: this is primarily NOT a medical decision. Its a question of VALUES. So, its really not a legal issue either.

Values. What would you do given the freedom to do so?
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Re: Something to get Real about: Baby Charles

Postby Lance Kennedy » Wed Jul 12, 2017 1:29 am

Values, Bobbo, are opinions. Don't get upset if your opinion is not shared.

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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Wed Jul 12, 2017 1:33 am

Who's upset Lance? The "Agree with MEEEEEEEEeeeeeeeee.... or I'll get upset." is not the only context from which people navigate through this veil of tears.
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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Wed Jul 12, 2017 1:45 am

bobbo_the_Pragmatist wrote:I know........... the system is rigged. But IDEAS are free.

Of note: this is primarily NOT a medical decision. Its a question of VALUES. So, its really not a legal issue either.

Values. What would you do given the freedom to do so?
If it were my child, I would have already pulled the plug. Quite aside the fact that the child may be suffering for no valid reason, I would not condemn anyone to an existence without conscious experience, self-awareness, and the possibility, however small, for some measure of happiness. Charlie will never have any of that. He is, for all intents and purposes, already dead.
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Wed Jul 12, 2017 1:49 am

I would too....................and depending on where you would draw that line ((far after I would)), the Court could well be interfering in THAT decision with all the same justifications used here.

As is so often the case: the issue is not morality, but rather whose morality is imposed.
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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Wed Jul 12, 2017 1:50 am

However, I would not impose my values in contradiction to the medical evidence.
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Wed Jul 12, 2017 1:52 am

Medical evidence says nothing about values.
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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Wed Jul 12, 2017 1:58 am

But it does provide factual information to guide a values-based decision. Without it, all you have is emotions...not a great basis for making decisions, generally.
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Wed Jul 12, 2017 2:56 am

.................dictionary.

Medical and/or factual information does NOT guide values-based decisions. It does "inform" such decisions.

Not a quibble.

Humans swim in a sea of emotions and values, facts to be avoided and God blamed for any consequential likelihoods in consequence.
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Re: Something to get Real about: Baby Charles

Postby Nikki Nyx » Wed Jul 12, 2017 3:01 am

bobbo_the_Pragmatist wrote:.................dictionary.

Medical and/or factual information does NOT guide values-based decisions. It does "inform" such decisions.

Dictionary...guide: a thing that helps someone to form an opinion or make a decision or calculation
What are the facts? Again and again and again-what are the facts? Shun wishful thinking, ignore divine revelation, forget what “the stars foretell,” avoid opinion, care not what the neighbors think, never mind the unguessable “verdict of history”--what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!
—Lazarus Long, from Time Enough for Love, by Robert A. Heinlein

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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Wed Jul 12, 2017 3:30 am

Ha, ha............well done. First time: what does my own WordWeb say (free clickable dictionary via hot key)...It's not the Oxford, but its hot keyed!!:

dictionary: A reference book containing an alphabetical list of words with information about them

Oops..............I meant to say the definition of dictionary also has no relevance to the role of medical information interplaying with the values it supports. Thats how you get Nazi Doctors.

I hope you were word playing? always fun.............and gave me a chance to tout WordWeb.
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Re: Something to get Real about: Baby Charles

Postby TJrandom » Wed Jul 12, 2017 7:46 am

bobbo_the_Pragmatist wrote:Ha, ha............well done. First time: what does my own WordWeb say (free clickable dictionary via hot key)...It's not the Oxford, but its hot keyed!!:

dictionary: A reference book containing an alphabetical list of words with information about them

Oops..............I meant to say the definition of dictionary also has no relevance to the role of medical information interplaying with the values it supports. Thats how you get Nazi Doctors.

I hope you were word playing? always fun.............and gave me a chance to tout WordWeb.


Book? B O O K???? How culturally quaint. :mrgreen:

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Re: Something to get Real about: Baby Charles

Postby bobbo_the_Pragmatist » Wed Jul 12, 2017 8:28 am

Image

ONCE!!!!!

............................................................................wHAT A PAIN.
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Re: Something to get Real about: Baby Charles

Postby TJrandom » Wed Jul 12, 2017 9:10 am

dictionary.... 辞書 (Jisho)... no book there.... :lol: :roll:

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Re: Something to get Real about: Baby Charles

Postby TJrandom » Wed Jul 12, 2017 9:13 am

OK, back on topic... should organs be harvested - assuming they are viable, and the law permits such for a child?


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