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  #1  
Old 07-29-2017, 11:48 AM
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Default The curious (and rather bizarre) case of Charlie Gard

For those who are not familiar with the story, they can read the summary here:

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Charlie Gard, the baby whose fate was the subject of a protracted court battle and made headlines around the world, has died, his parents have said.

Chris Gard and Connie Yates fought a five-month campaign to have him transferred from Great Ormond Street hospital in central London, where he was on life support for experimental treatment they hoped could give “a meaningful life” to Charlie, who was blind and deaf and could not breath without a ventilator.

They abandoned their legal battle on Monday, saying it was too late to save him. On Thursday, he was transferred to an unspecified hospice and he died on Friday, a week before he would have turned one, after having his life support systems withdrawn.

In a statement, Charlie’s mother, Connie Yates, said: “Our beautiful little boy has gone. We are so proud of you, Charlie.”



For those who don't know, Charlie suffered from an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). The experimental treatment Charlie's parents sought (NBT or nucleoside bypass therapy) had never been tried in this case ever; however, the parents raised upwards of £1.3 million ($1.6 million) via GoFundMe to transport Charlie to the US for the experimental treatment. The UK as well as the European courts denied their request and sided with the hospital that the treatment wouldn't provide Charlie with 'quality of life' even if it prolongs Charlie's life for a bit. The parents finally gave up as it was too late for any treatment to work anymore.

This whole story has now become a left vs right debate on who gets to decide the fate of the child. This is no longer about whether Charlie could've been saved, but about government vs parental authority.

Personally, I believe government or court had no business in what Charlie's parents were trying to do. They raised the money, it should've been their choice. The specific argument of 'quality of life' doesn't hold water for me because it's too broad to define. Parents should have the right to decide what's best for their children till it's not physical or mental abuse. In this case, it was neither.

What are your opinions? Who should have the final say in such a case?
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Old 07-29-2017, 01:31 PM
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The doctors - the only people with the knowledge to make this decision - should make this decision. Keeping Charlie 'alive' - and when I say alive, I mean artificially ventilated - to use him as a guinea pig in a trial which has not even been tested on MICE with this same condition, is absolutely not in his best interests.

Let me give you a slightly better explanation - which, again, people would know if they read the court order. Charlie has a disease which, at present, has had only 16 cases worldwide. Sadly, all have been fatal. 'There is a treatment' is false. RRM2B (The strain of Mitochondrial DNA depletion disease Charlie had) has never been treated, much less cured. The 'treatment' offered had not even been tested on MICE with this condition - let alone a baby a few months old who is capable of feeling pain.

On top of that - and of course, GOSH themselves looked into this treatment, fully intending to do everything for Charlie - the damage that Charlie had already suffered due to seizures - back in December and January meant this treatment could not help. He had minimal brain function, unable to see, hear, or even open his eyes. The treatment can not reverse this damage. There is no scientific evidence this would have had any benefit to Charlie. A FACT the doctor himself admitted in court.

Now that I have the medical side out of the way, let's get to the legalities. Parental Rights do not exist in the UK. You have Parental Responsibilities. One of those responsibilities is to keep your child from harm. The Children Act 1989 states the childs welfare is paramount - not that of the parents. While parents can make most decisions in a healthcare capacity, even stupid ones such as not to vaccinate, they cannot make a decision in which there is a reasonable, even likely, possibility of the child coming to harm and causing undue pain and suffering.

Also, this was not a case of 'Government' making a decision. First, the judges in the UK are not chosen by the government, and, second, the decision was made by Charlies medical staff. Our judges are non-partisan, not elected, and do not answer to the government.

As for 'raising the money' - it was NEVER about the money. If this treatment had any reasonable chance of success, the NHS would have paid for it. GOSH themselves approached an ethics committee about nucleoside therapy before the full extent of additional seizures was known. The fact that this doctor was willing to take £1.2MILLION from the parents to use a sick baby as a guinea pig despite it not being in his best interests says all I need to know about 'private' healthcare.

'It was not physical abuse' is an opinion - one which medical staff and the judiciary disagree with. Subjecting Charlie to a potentially deadly, painful and damaging therapy for no gain is abuse.

Throughout all of this, I've felt terrible for Charlie's parents. They are wrong, but they don't have to be right. They're not medical professionals, they are doing what they think is right for their son. As a parent, you never want to 'give up' - and that's why decisions such as turning off life support are not theirs to make. As an ICU nurse, I've assisted in removal of life support. I've been there to comfort families, to explain the decision, and usually they agree. They don't want their family member in pain.

In Charlie's case - they disagreed. And that makes me angry. Not because they disagreed, but because they were given false hope, they were used as political pawns by the US Right. They were egged on by 'Charlies Army' who had no knowledge of the complexities involved, but instead used this sick baby to push their own agendas. Those people disgust me.

I recommend everyone who thinks GOSH was wrong to read the full judgement. I've seen so many incorrect statements used as fact in these debates because no one has bothered to ensure they are correct before getting on their high horse.
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Old 07-29-2017, 05:07 PM
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For me, GOSH and the courts have been 100% right throughout.

It basically comes down to the reality of "what do the parents really know about medicine?" Nothing is the answer and that, along with their grief is why they have to be removed from a large part of the decision making process. It is telling that Charlie's guardian agreed with GOSH throughout.

In a similar position, it would be very hard for anyone to not grasp at straws. But the hope Charlie's parents had been given by the very mention of the US professor was entirely false from the very beginning. And through their grief, they has lost sight of the truth - there was no helping Charlie. As Becca says, there is no cure or treatment for this disease, a fact which has been lost in the hysteria, making it seem like GOSH and courts were denying treatment on a financial basis. That is just not true.

It seems that the US treatments might have only slowed or reversed some muscle wastage. It would not have repaired the extensive brain damage, which had meant that Charlie Gard essentially died 6 months ago.

It was best to just let him slip away.

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Old 07-29-2017, 06:26 PM
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At no point am I saying this had anything to do with finances. For me, the question is about authority. Of course, doctors are professionals so they know what could be possibly the best recourse. But when they had already recognized that there's no saving Charlie, why wouldn't they allow the parents to try whatever they wanted to? Their choices, their consequences to live with.

I know the case, the treatment presented and the viability of the treatment. I'm pretty sure Charlie would've died anyway. NBT has never been tried on RRM2B, and in my mind there's no doubt that it wouldn't have worked. Having said that, if someone's already dying, why deny them the opportunity to try every avenue they can? My only question is, when the doctors have already given up, why prevent Charlie's parents from doing whatever they could've. They were no going to save him, they had no cure, so why not let Charlie of the hook? They were not going to foot the bill (GOSH or the NHS), then who exactly were the looking out for? Charlie, who would've died anyway? What exactly is "dying with dignity?" What dignity is there in death? I'm pretty sure the doctors didn't know if he was suffering or not. They didn't even know if he was in any pain. And who gets to determine what's best for Charlie? When did death become better than any chance at life, even if machine assisted?
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Last edited by CyberPunk : 07-29-2017 at 06:31 PM.
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Old 07-29-2017, 07:52 PM
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But when they had already recognized that there's no saving Charlie, why wouldn't they allow the parents to try whatever they wanted to? Their choices, their consequences to live with.
No, not their consequences to live with - Charlie's. Children are not the property of their parent to do as they wish. That doesn't mean as a society we stop parents from making stupid decisions. But we as a functional society will intervene when children are coming to significant harm.

Quote:
I know the case, the treatment presented and the viability of the treatment. I'm pretty sure Charlie would've died anyway. NBT has never been tried on RRM2B, and in my mind there's no doubt that it wouldn't have worked. Having said that, if someone's already dying, why deny them the opportunity to try every avenue they can? My only question is, when the doctors have already given up, why prevent Charlie's parents from doing whatever they could've. They were no going to save him, they had no cure, so why not let Charlie of the hook? They were not going to foot the bill (GOSH or the NHS), then who exactly were the looking out for?
They were looking out for Charlie, as medical professionals are trained to do. What you are advocating is looking out for the parents. While that is a huge part of medicine - especially pediatric - you can't put a child, one with no chance of improvement, one who can feel pain through procedures with no benefit, with no idea what effect they could even have.

On top of that, ou act as if Charlie is just in a nice sleep. But invasive ventilation is not nice. The doctors at GOSH believe Charlie to be capable of feeling pain, with no way to express it. Having a tube forced down your trachea, with air pushed in, unable to cough or clear your own secretions meaning your nurse has to force a suction tube down the tube in order to produce an artificial 'cough' - is horrendous. Sometimes, it's necessary, and ventilation is an amazing tool. But in a baby with no chance of improvement, keeping him that way for someone to perform experiments on him, is, at the very least, cruel.

Quote:
Charlie, who would've died anyway? What exactly is "dying with dignity?" What dignity is there in death? I'm pretty sure the doctors didn't know if he was suffering or not. They didn't even know if he was in any pain. And who gets to determine what's best for Charlie? When did death become better than any chance at life, even if machine assisted?
I ask this without trying to be patronising - do you have any medical background? I ask, because, I do. Specifically in ICU. Specifically in ventilation. Specifically in withdrawal of care. Specifically in dignity in death. I assure you, 100%, there can be dignity in dying. If we can make the right decisions at the right time, if we can give the patient what they want, if we can make the patient comfortable, if we can ensure they have no pain, if we can ensure they're surrounded by loved ones, if we can ensure they are in a calm environment, if we can ensure they have physical dignity - there can be dignity in death.

Imagine how you want to die. The fact most people have a 'in my sleep' or 'peacefully surrounded by family' shows there absolutely can be dignity in death in the same way some are truly awful. This baby wasn't going to survive - the least we could do is give him that dignity.

Last edited by HBK-aholic : 07-29-2017 at 07:55 PM.
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Old 07-29-2017, 11:12 PM
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No, not their consequences to live with - Charlie's. Children are not the property of their parent to do as they wish. That doesn't mean as a society we stop parents from making stupid decisions. But we as a functional society will intervene when children are coming to significant harm.
Maybe it's the difference in culture, but parents have everything to lose when they lose their child. When you say significant harm, you portray it as parents are being abusive when they are being anything but. What exact harm did they intend? That they wanted to try everything possible to save their child? Stupid decision as in to try every avenue they can take? Charlie would've died anyway, why not die trying?

Quote:
They were looking out for Charlie, as medical professionals are trained to do. What you are advocating is looking out for the parents. While that is a huge part of medicine - especially pediatric - you can't put a child, one with no chance of improvement, one who can feel pain through procedures with no benefit, with no idea what effect they could even have.
What I'm advocating is for the decision such as this to not lie with the hospital or the court. It's not about parents' or child's best interest. Whatever I've read about the NBT indicates that it's not an invasive procedure (nucleoside is administered in form of pills). The worst that could've happened would've been the failure of the treatment. Doctors had already given up, then why not try something else?

Quote:
On top of that, ou act as if Charlie is just in a nice sleep. But invasive ventilation is not nice. The doctors at GOSH believe Charlie to be capable of feeling pain, with no way to express it. Having a tube forced down your trachea, with air pushed in, unable to cough or clear your own secretions meaning your nurse has to force a suction tube down the tube in order to produce an artificial 'cough' - is horrendous. Sometimes, it's necessary, and ventilation is an amazing tool. But in a baby with no chance of improvement, keeping him that way for someone to perform experiments on him, is, at the very least, cruel.
Well, treatments can be nasty, we all know that. Breast removal to treat breast cancer, chemotherapy, all of these medical procedures are painful and sometimes life altering. Yet, they are performed. Again, my point is not whether the 'experiment' as you say would've done anything to improve his condition, but the very denial by hospital and courts to even seek one is problematic. It's not your, mine or any third party's place to say what's cruel for a child when the most merciful thing we can come up with is death.

Quote:
I ask this without trying to be patronising - do you have any medical background? I ask, because, I do. Specifically in ICU. Specifically in ventilation. Specifically in withdrawal of care. Specifically in dignity in death. I assure you, 100%, there can be dignity in dying. If we can make the right decisions at the right time, if we can give the patient what they want, if we can make the patient comfortable, if we can ensure they have no pain, if we can ensure they're surrounded by loved ones, if we can ensure they are in a calm environment, if we can ensure they have physical dignity - there can be dignity in death.

Imagine how you want to die. The fact most people have a 'in my sleep' or 'peacefully surrounded by family' shows there absolutely can be dignity in death in the same way some are truly awful. This baby wasn't going to survive - the least we could do is give him that dignity.
There's no dignity in death. You can have a peaceful or a horrific/painful death (most prefer a peaceful one). But there's no dignity in it.

I'm not a medical professional (studied for it before taking up engineering), but I'm a product of parents doing everything to save their child. I met with a horrific accident that left me 66% burnt when I was 2 and a half year old. Every doctor gave up on me but my parents who had me moved to a different city and different doctor. Most doctors told my parents I won't have 'quality of life', but hey look. I'm not comparing my case with Charlie's, of course they are very different, but the fact that the fate of a child, who can't speak for himself, isn't a consenting adult, is decided by a third party and not the parents is flabbergasting to me. I cannot fathom that 'death' can be preferable over any form of life.
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Old 07-30-2017, 05:44 AM
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What exact harm did they intend?
They did not intend harm but that does not mean they would not have caused it.

We really have two competing fundamental rights in play here - right to life versus right to be free from human experimentation.

There was no evidence that the 'treatment' would not cause further suffering nor that it would help. That makes it an experiment that skirts very closely to breaking the Nuremburg Code and the Hippocratic oath.

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It's not about parents' or child's best interest.
Wrong. It is about the child's best interests. Those interests were best served by not exposing him to expermentation with no proven positive results and no investigated side effects. Given that Charlie's disease had brain involvement unlike the others cases, what if this nucleoside would have destroyed every one of Charlie's brain cells, sending jolts of unimaginable pain through his tiny body?

That is the kind of thing that doctors, guardians and judges have to protect people and particularly children from.

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Well, treatments can be nasty, we all know that.
Treatments with a proven track record of working. What was being advocated here was in no way a treatment. It would have been the early stages of an experiment with unknowable results.

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It's not your, mine or any third party's place to say what's cruel for a child when the most merciful thing we can come up with is death.
Pretty sure it is for doctors and judges to gauge what is cruel, which is what happened in this case.

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but the fact that the fate of a child, who can't speak for himself, isn't a consenting adult, is decided by a third party and not the parents is flabbergasting to me.
Again, the parents know nothing about medicine, are so effected by grief that they cannot think straight and do not own Charlie Gard.

They cannot do whatever they want to him.

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I cannot fathom that 'death' can be preferable over any form of life.
Well, it most certainly can be.

And even if we disagree on that fundamental point, was Charlie Gard really still alive? I doubt it. Those seizures stripped him of his consciousness. Experimenting on the still-breathing body which is able to feel pain to no predictable benefit is illegal.
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Old 07-30-2017, 08:11 AM
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Maybe it's the difference in culture, but parents have everything to lose when they lose their child. When you say significant harm, you portray it as parents are being abusive when they are being anything but. What exact harm did they intend? That they wanted to try everything possible to save their child? Stupid decision as in to try every avenue they can take? Charlie would've died anyway, why not die trying?
To clarify, I don't think the parents are abusing their child, nor was I referring to them when I referenced stupid decisions. I understand - they were doing what they thought was right. However, they do not have the medical background to understand the complexities of Charlie's case. More than once, his mother referred to herself as an expert - she isn't. And that's ok - it's why we have highly skilled medical professionals working in a hospital, and ethics committees to help make complex decisions. The US doctor gave his mother false hope, and he disgusts me, but you can't fault her for grasping at those straws. This is where Charlie's doctors came in. Had this experiment been performed with no chance of benefit, they absolutely would have been guilty of, at LEAST, abuse of that child.



Quote:
What I'm advocating is for the decision such as this to not lie with the hospital or the court. It's not about parents' or child's best interest.
This is where you lost me. It is ALWAYS about the childs best interest.


Quote:
Whatever I've read about the NBT indicates that it's not an invasive procedure (nucleoside is administered in form of pills). The worst that could've happened would've been the failure of the treatment.
Wrong. I don't want to get into pharmacology with you, but the absolute worst that could happen was not 'failure of treatment'. There's a reason these therapys, and any medication has to go through thousands of tests over many years, including peer review and clinical trials. If the worst that could happen was failure, maybe that wouldn't be the case. But untested medicine can cause much worse than simply not working.

Quote:
Well, treatments can be nasty, we all know that. Breast removal to treat breast cancer, chemotherapy, all of these medical procedures are painful and sometimes life altering. Yet, they are performed.
You're joking, right? You're aware those treatments are fully tested, have scientific evidence to back up their use and a proven track record of helping? That the reason Charlie was not offered nucleoside therapy was that it had none of those things? You're aware that, even though chemotherapy exists, it is not used or offered to every person with cancer, because benefits do not outweigh the harm?

Quote:
Again, my point is not whether the 'experiment' as you say would've done anything to improve his condition, but the very denial by hospital and courts to even seek one is problematic. It's not your, mine or any third party's place to say what's cruel for a child when the most merciful thing we can come up with is death.
But the medics DID seek to help. When his condition was diagnosed, GOSH themselves not only looked into the treatment, but sought approval from the ethics committee to proceed. Charlie, sadly then suffered seizures which meant the treatment would no longer be of benefit. We don't use children, especially ones with the ability to feel pain, as experiments to line the pockets of one doctor who strung along the family this entire time.

Quote:
There's no dignity in death. You can have a peaceful or a horrific/painful death (most prefer a peaceful one). But there's no dignity in it.
Dignity - the state or quality of being worthy of honor or respect.

That is, absolutely, 100% possible to provide. I have ensured that happened several times and never once had a complaint from family.

What you mean is that death isn't nice, isn't good. That, again, is up for discussion. There are people right now fighting for their right to die, to be allowed a dignified death away from their pain, instead of allowing a terrible disease to take them slowly.


Quote:
I'm not a medical professional (studied for it before taking up engineering), but I'm a product of parents doing everything to save their child. I met with a horrific accident that left me 66% burnt when I was 2 and a half year old. Every doctor gave up on me but my parents who had me moved to a different city and different doctor. Most doctors told my parents I won't have 'quality of life', but hey look. I'm not comparing my case with Charlie's, of course they are very different, but the fact that the fate of a child, who can't speak for himself, isn't a consenting adult, is decided by a third party and not the parents is flabbergasting to me. I cannot fathom that 'death' can be preferable over any form of life.
I'm truly glad that everything worked out well for you. Obviously I cannot comment further on your specific case.

To say you can't fathom death to be preferable to any form of life is fine, I get it. Though not everyone feels the same. My husband is under strict instructions to turn off my life support if the alternative is a life I cannot enjoy, where I cannot do the things I love, or undertake basic hygiene myself. I've had many patients make the decision to stop their own treatment and allow them to pass naturally. This is a tragic case, but ultimately Charlie's body is not compatible with life. There's nothing we can do to change that.
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Old 07-30-2017, 10:45 AM
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I'm not smart, really I'm not, so I may be completely missing the argument here. What it seems to me though, is that you are arguing that since the baby was already going to die, why not try more procedures that would kill him anyway in the chance that a miracle happens?

Maybe it's just an American thing because of our health care system, but so many people I know distrust doctors. Like why? Why would someone devote so much time and effort just to lie to people one day? Yeah, every profession has a handful of shitty individuals, but 99% of people have zero medical knowledge. Doctors, who have knowledge, should have some say in things like this. I never want children. It's a responsibility I want no part of. If that ever changes, you bet I'm gonna take the advice of the doctors when it comes to my children because I don't know shit about medicine and medical procedures. It's why I trust scientists on things I don't know anything about. If you don't know something, then you should trust the people who have devoted years of their life to that subject. We live in a world where former Playboy models have almost as much influence in the vaccination argument as doctors. It's mad.

There are some people out there that cling to life when they are at the end of their rope and humans are capable of some truly remarkable things. Growing up I was told the story of my Grandma Reed. She was in her late 80s and had been diagnosed with pancreatic cancer. Doctors told her she had six months at best due to her age and the state of the cancer. About a month after this news, my mom found out she was pregnant with me. My grandma was determined to live long enough to see the birth of her first great grandchild. I was born April 8th, she passed April 24th. She lived almost four months more than what doctors gave her. Now yes, that was just an estimate, but I believe that humans can perform such acts when determined enough. Some people though, they just don't want to suffer. Someone people don't understand why there are people who turn down things like chemo. For all accounts chemo is hell and isn't guaranteed to fix anything, so I fully understand why not everyone wants that. Like myself, I've told people for years that if for some reason I ever end up in a vegatitive state, just pull the plug. Yeah, technically I may be "alive" but that isn't living. So yeah, I do believe there is dignity in death.

Quality of life matters, and as harsh and as fucked up as it sounds, even if the experimental procedure would have helped him "live" a little longer, he is still going to be in pain, have brain damage, and basically be in a state where life isn't worth living. At that point, I think death is the humane option and you have to try to remove emotions and attachment from that.
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Old 07-31-2017, 11:14 AM
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Originally Posted by Rainbow Yaz View Post
I'm not smart, really I'm not, so I may be completely missing the argument here. What it seems to me though, is that you are arguing that since the baby was already going to die, why not try more procedures that would kill him anyway in the chance that a miracle happens?
Nah, the argument is who gets to chose for the child. It's not the lack of trust in the doctors or the hospital, but who gets to eventually decide in a case like this where the patient himself is not capable of conveying his wishes.

Quote:

Maybe it's just an American thing because of our health care system, but so many people I know distrust doctors. Like why? Why would someone devote so much time and effort just to lie to people one day? Yeah, every profession has a handful of shitty individuals, but 99% of people have zero medical knowledge. Doctors, who have knowledge, should have some say in things like this. I never want children. It's a responsibility I want no part of. If that ever changes, you bet I'm gonna take the advice of the doctors when it comes to my children because I don't know shit about medicine and medical procedures. It's why I trust scientists on things I don't know anything about. If you don't know something, then you should trust the people who have devoted years of their life to that subject. We live in a world where former Playboy models have almost as much influence in the vaccination argument as doctors. It's mad.
Here's the fundamental disagreement I have and that is of personal liberty. Charlie had no personal liberty; neither the parents nor the hospital knew what Charlie wanted. It's not a case where patient willingly sought 'death with dignity', it was implied by the hospital. Parents thought otherwise. Who gets to decide? Whose life gets more affected? Who has the final say? Indian laws keep the decision with the next of kin, especially for patients who can't consent for themselves. UK has different laws and I get it, but where is the discretion in cases like this where the patient cannot consent.

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Quality of life matters, and as harsh and as fucked up as it sounds, even if the experimental procedure would have helped him "live" a little longer, he is still going to be in pain, have brain damage, and basically be in a state where life isn't worth living. At that point, I think death is the humane option and you have to try to remove emotions and attachment from that.


'Quality of life' is a very subjective thing. How do you determine quality of life? By our standards of quality of life, Stephen Hawking has none, yet he's living 'quality life' by his standard. Equating disadvantages and hardships of life with quality does nothing for the argument. And that's why the question from the very beginning I had was who decides.

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To say you can't fathom death to be preferable to any form of life is fine, I get it. Though not everyone feels the same. My husband is under strict instructions to turn off my life support if the alternative is a life I cannot enjoy, where I cannot do the things I love, or undertake basic hygiene myself. I've had many patients make the decision to stop their own treatment and allow them to pass naturally. This is a tragic case, but ultimately Charlie's body is not compatible with life. There's nothing we can do to change that.
That's the exact thing I'm saying. In your case, it would be your decision. Every country or state that has 'dying with dignity' laws does it according to patients' wishes and even then there are restrictions (e.g. if the patient is terminal and has less than 6 months to live). Even by your admission, it was the patients who made the decision to stop treatment. In Charlie's case, where the patient is incapable of any decision making, who makes the decision? It was certainly not Charlie, who according to the UK and European laws has 'right to to life.' When did his rights go out the window then? Who is making decisions for him? The point I'm trying to make it is the only people who'd lose anything in this are Charlie and his parents. It's not anybody else's place to determine what Charlie would've wanted but his parents.
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Last edited by CyberPunk : 07-31-2017 at 11:21 AM.
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