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  #11  
Old 07-31-2017, 02:39 PM
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Originally Posted by CyberPunk View Post
It's not anybody else's place to determine what Charlie would've wanted but his parents.
Parents/next of kin do get to decide what to do in this situation in the UK, in concert with the doctors who inform them of the best courses of action. Its the basis of 'informed consent'.

But parents/next of kin do not always know or do what is best. Grief, denial, stubbornness etc. can lead to not just poor decisions but actually bad/harmful decisions. And that is when doctors, guardians and the courts must intervene.

What if they had wanted Charlie to have a horrifically invasive procedure that would have caused unimaginable pain with a 0% chance of any kind of success? What if they wanted to give him high doses of some kind of poison because they read it might wake him up on some internet website? What if they wanted to poor hot sauce down his throat because they saw something like that wake someone up in a cartoon? What if they wanted to just randomly saw one of his legs off just so they can say that they tried everything?

Where is the line?

Here, the doctors, the guardian and the courts decided that the line was the exposure of Charlie Gard to an experiment; an experiment where the professor refused to see Charlie until 7 months after he was asked by GOSH and who retained a financial interest in the experiment; an experiment which had not even been tried out on mice and therefore had no evidence that it would have worked or of the potential side-effects, which is essentially against international law (which is the reason why GOSH had to go to an ethics committee even before contacting the professor).

In the case of Charlie Gard, the doctors, guardian and courts were there to protect a terminally ill, virtually brain-dead little boy from the grief, denial and desperation of his parents.
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Last edited by Барбоса : 07-31-2017 at 02:53 PM.
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Old 07-31-2017, 03:53 PM
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This sort of situation reminds of an episode of Law & Order that I first watched several years ago that's always just kind of stuck with me.

In the episode, a mother was being charged with abusing her daughter by wanting to subject her to procedures that would ultimately stung her growth, prevent her from physically developing to a mature woman, etc. Sounds downright sadistic right? Well, the thing is that this little girl, who is physically I think 5 or 6 years of age, has severe neurological problems that will result in her having the mind and physical limitations of an infant. She can't walk, can't crawl, can't lift or hold up her own head, can't turn over by herself, etc. and it's the parents' position that these procedures will give her a better quality of life, partially because it will make it easier to physically care for her if she doesn't grow or mature. This little girl, even if she survived to maturity, would never have sex, can't even remotely consent to sexual activity, never have children and would essentially be confined to a bed for the rest of her life. The only significant difference is that her caregivers would be able to handle her with more ease if she ultimately remained a child.

In the case of Charlie Gard, you have a similar situation in which you have the courts on one side, the parents on the other and both of them feel that they knew what was best for Charlie.

I can see both positions as having merit; this final treatment, as has been mentioned, was extremely experimental and MIGHT have extended his life for a while. Also, as has been mentioned, the quality of life is an issue as this treatment may well have resulted in the baby suffering excruciating pain while briefly extending his life; unless something truly miraculous happened, the treatment would ultimately prove ineffective, Charlie would die and would most likely suffer greatly before doing so. As a result, the UK courts and GOSH were against removing Charlie to the US to undergo the treatment.

On the other side, you have Charlie's parents and they were in the middle of what'd be any decent parents' worst nightmare. I don't believe for one moment that they intended Charlie any harm, they were doing what any real parent would do in my opinion. They were clinging to hope, they wanted to give Charlie every possible chance, no matter how remote, to get well and I don't believe they were wrong. Parents are supposed to fight for their children, they're supposed to do all that they can to protect them and I can't fault them for that hard wired instinct. The alternative was to just sit back and watch him die; that's something that's unacceptable to many parents from all walks of life. I've heard stories of mothers in Africa literally fighting lions who are trying to make off with their children, with their bare hands, rather than give in to the hopelessness of the situation.

Sometimes, parents have to make hard decisions when it comes to the well being of their children even when there are simply no good options to choose from. I personally couldn't look at Charlie Gard's parents and tell them they're wrong nor could I tell them they were right. If it was up to me, I don't think I could regulate this as a court case or any sort of left vs. right political fight. I'd tell the various political organizations from both sides to wash my balls with a warm wet rag because baby's life shouldn't be a political tool; regardless of whether one believes life beings at conception or not, there's no debate that this was a baby, a living baby that deserved better than the muckraking political circus he found himself in the middle of.
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