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Adjutant
 
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Post 27 Apr 2017, 9:48 am

I am guessing that most/all parents would be willing to go for a treatment that has a 1% chance of working vs. the treatment that has 0% chance...terms such as likely and very unlikely are not very helpful. If you say no chance or one in a million then I can understand what is meant. To deny a parent choice you would need an assessment of likelihood of success vs chance of harm. If you have a low chance of working and a high risk of harm then interference is perhaps justified (assuming those are not contested facts).

I can only imagine the anger I would feel if a doctor (upheld by a judge) prevented me the opportunity to try a medical treatment that had even a 1% chance of successful treatment so that my child could live, when the downside is not that their condition would get worse but that their existence is imagined to be so painful--by the way, there is nothing that I saw that indicated that the child was in exceptional pain--that a chance at living (the only chance the child will ever have) is deemed to not be worth it. Government paternalism run amok!
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Post 27 Apr 2017, 10:19 am

Waiting for rickyp to respond with a 'yes' or 'no.'

In the meantime, what if you (Ricky) were told you had a fatal disease and the doctor said there was one treatment that might help? Even if he told you the odd were long, might you try it or would you just as soon die?

Sometimes it seems like you've forgotten there are human beings with emotions involved--and lives on the line.
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Post 27 Apr 2017, 12:57 pm

freeman3 wrote:Well, your standard sounds reasonable but what does going against medical advice mean? I'm sure doctors will disagree on what to do in a lot of medical situations, would disagree on the chances of medical treatments working, etc. There might be majority opinions in the medical community as to what to do with minority positions or even third options. I have done medical malpractice cases and most of the time---unless the error is egregious--there are well-qualified experts willing to give opposing opinions on whether a doctor met the standard of care and/or whether the error caused harm to the patient. So I don't think going against medical advice is enough. The medical treatment sought by the parents would need to be wholly without support in the medical community. If parents can find legitimate support in the medical community for the treatment why should their ability to choose it be denied because they happen to be treated by a medical provider who does not subscribe to that treatment?
There is no evidence it would work for his particular type of disorder, and no evidence it would work for someone as severely affected. That came from the medical experts who are doing the trials now. So no experts would say it will cure him.
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Post 28 Apr 2017, 2:00 pm

Dr. fate
Is "unlikely" a scientific certainty?

Hint: that is a "yes" or "no" question.


So is this your impersonation of Lloyd Christmas?

The first problem with the therapy is that it is a large molecule . The blood brain barrier stops 100% of large molecules from being transmitted into the brain. So, unless its the first time ever that the blood brain barrier is broken by a large molecule .... It is certain not to get into the brain. Therefore it will not help...

So what if it was a small molecule? (It isn't) 98% of small molecules are stopped by the blood brain barrier. Therapeutic molecules and antibodies that might otherwise be effective in diagnosis and therapy do not cross the BBB in adequate amounts.
The US doctor hasn't claimed that his therapy would cross the blood brain barrier, and offers no evidence that it even could.

Then there's the fact that the baby is affected by RRM2B-Related Mitochondrial Disease
No cures and few effective treatments exist for any form of mitochondrial Disease.
see Encephalopathy caused by genetic condition... .....

https://www.ncbi.nlm.nih.gov/books/NBK195854/

So, in this case, "most likely" means certainty.
There would be some benefit to medical science by inflicting more suffering on the baby. But there is no hope, whatsoever, that this treatment will have a genuinely positive affect on the baby.
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Post 28 Apr 2017, 2:55 pm

They did appoint a lawyer to advocate for the child and her best argument was it would "prolong process of dying." Yeah, the chances of the treatment being effective are remote, but stepping into the child's shoes and saying it is in his best interests to die over allowing a parent to try a very low probability treatment...seems wrong to me. There is just not enough of a reason for the State to step in and prevent the parents in good faith trying an experimental treatment when there is almost no downside, given that the child is otherwise going to be allowed to die. I am betting that most us if we we were in a similar situation would say give it a shot if we were similarly incapacitated. Why not? What's there to lose?
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Post 29 Apr 2017, 8:05 am

freeman3
there is almost no downside

.

Becoming an expensive medical experiment which has no hope of a positive resolution, and at best will result in a lingering death is not in the best interests of the child. It's cruel.
And quite frankly, cruel to the parents, who are being lead down a path that they may well come to regret as they witness the pointless extended suffering of their child.

What we have to lose, freeman, is our dignity. And with our dignity, our humanity. The right to die with dignity should be allowed to children and adults alike.
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Post 30 Apr 2017, 4:21 am

freeman3 wrote:They did appoint a lawyer to advocate for the child and her best argument was it would "prolong process of dying." Yeah, the chances of the treatment being effective are remote, but stepping into the child's shoes and saying it is in his best interests to die over allowing a parent to try a very low probability treatment...seems wrong to me. There is just not enough of a reason for the State to step in and prevent the parents in good faith trying an experimental treatment when there is almost no downside, given that the child is otherwise going to be allowed to die. I am betting that most us if we we were in a similar situation would say give it a shot if we were similarly incapacitated. Why not? What's there to lose?

An adult choosing experimental treatment mention for themselves is one thing. Choosing it for someone else, particularly a severely disabled young child who has no capacity to make a decision is something else.

Have you checked what the side effects of the treatment are?
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Post 01 May 2017, 2:28 pm

rickyp wrote:Dr. fate
Is "unlikely" a scientific certainty?

Hint: that is a "yes" or "no" question.


So is this your impersonation of Lloyd Christmas?


No, it was a simple question that you don't have the IQ and/or integrity to answer.
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Post 02 May 2017, 5:43 am

fate
No, it was a simple question that you don't have the IQ and/or integrity to answer.


rickyp, following a detailed explanation of the medical science invovled...
So, in this case, "most likely" means certainty.
There would be some benefit to medical science by inflicting more suffering on the baby. But there is no hope, whatsoever, that this treatment will have a genuinely positive affect on the baby
.

You're a jackass.
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Post 02 May 2017, 7:56 am

rickyp wrote:fate
No, it was a simple question that you don't have the IQ and/or integrity to answer.


rickyp, following a detailed explanation of the medical science invovled...
So, in this case, "most likely" means certainty.
There would be some benefit to medical science by inflicting more suffering on the baby. But there is no hope, whatsoever, that this treatment will have a genuinely positive affect on the baby
.

You're a jackass.


I can actually answer y/n questions. You cannot.
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Post 02 May 2017, 8:04 am

rickyp wrote:fate
No, it was a simple question that you don't have the IQ and/or integrity to answer.


rickyp, following a detailed explanation of the medical science invovled...
So, in this case, "most likely" means certainty.
There would be some benefit to medical science by inflicting more suffering on the baby. But there is no hope, whatsoever, that this treatment will have a genuinely positive affect on the baby
.

You're a jackass.


Oh, and "certainty" CANNOT mean "most likely."

And so:

Certainty:
something that has no possibility of any other result


Most likely:
more likely than not : probably It will most likely rain tomorrow.


So, let me give you another definition. A jackass "is someone who says that two things that cannot possibly be the same are, in fact, the same."

Have a nice day, Jackass.
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Post 02 May 2017, 8:46 am

We have a heretofore unreached level of discussion on Redscape when we are explicating the meaning of jackass...
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Post 02 May 2017, 9:06 am

I have to say that the frustration on people who choose to not answer a question, but continue to put forth more is one sided, and saying that, I do not condone the name calling. I surely understand it, but do not condone it.

My recommendation is not to act like one...
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Post 02 May 2017, 10:26 am

As to not not answering questions put forth, not sure how I feel about that. I feel like I have enough confidence in my position that I can answer a question which is designed to show the weakness of my position. Others take a more competitive approach and refuse to be pressured into answering questions. The reality is we don't get to control how others contribute to a discussion. If someone wants to ignore a question they can. You are free to point out the refusal to answer a question, but we do not control how others will contribute. I certainly do not feel that I am going to compel to answer any questions that I have about DF's position in the way I want them answered. While frustrating the ultimate judge is the unseen reader who decides whose argument is better. The only problem of course is that for the most part we don't get to know their judgment.

The way I feel about it is (1) I don't get to control another poster's contribution to a discussion and demand that questions be answered, and (2) If I have a question that I pose that I think needs answering and the other side refuses to answer then I will either point that out (and note that the failure to respond indicates the weakness of their position), just say that there is no no point in further discussion unless the question is answered, or just not bother to respond. But I think it is pointless to demand further response when others do not respond. While it would be nice if these questions were about...a search for some kind of truth in which answering questions would be part of a collaborative effort to find answers, the reality is that for the most we are advocates here seeking to prove that our values/beliefs/politics are correct and therefore concessions to the other side go against our underlying beliefs and are not easily made. Again, for the most part, it is the reader you are trying to convince...not another posters . Because they are not going to concede.
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Post 02 May 2017, 5:41 pm

freeman3 wrote:As to not not answering questions put forth, not sure how I feel about that. I feel like I have enough confidence in my position that I can answer a question which is designed to show the weakness of my position. Others take a more competitive approach and refuse to be pressured into answering questions. The reality is we don't get to control how others contribute to a discussion. If someone wants to ignore a question they can. You are free to point out the refusal to answer a question, but we do not control how others will contribute. I certainly do not feel that I am going to compel to answer any questions that I have about DF's position in the way I want them answered. While frustrating the ultimate judge is the unseen reader who decides whose argument is better. The only problem of course is that for the most part we don't get to know their judgment.

The way I feel about it is (1) I don't get to control another poster's contribution to a discussion and demand that questions be answered, and (2) If I have a question that I pose that I think needs answering and the other side refuses to answer then I will either point that out (and note that the failure to respond indicates the weakness of their position), just say that there is no no point in further discussion unless the question is answered, or just not bother to respond. But I think it is pointless to demand further response when others do not respond. While it would be nice if these questions were about...a search for some kind of truth in which answering questions would be part of a collaborative effort to find answers, the reality is that for the most we are advocates here seeking to prove that our values/beliefs/politics are correct and therefore concessions to the other side go against our underlying beliefs and are not easily made. Again, for the most part, it is the reader you are trying to convince...not another posters . Because they are not going to concede.

And, I'm fine with that, except:

1. I will answer yes/no questions. I can always explain after giving an answer.
2. He demonstrably argued "not y" was the same as "y." That is an epic logical fallacy.