# The Charlie Gard case(terminally ill baby and parental rights) **URL:** \ **Category:** Great Debates\ **Created:** [July 7, 2017, 2:07am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664 "2017-07-07T02:07:10Z")\ **Posts on this page:** 20\ **Page:** 2
**Author:** ![Budget\_Player\_Cadet](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/budget_player_cadet/32/205_2.png) [@Budget\_Player\_Cadet](https://boards.straightdope.com/u/Budget_Player_Cadet)\ **Post date:** [July 7, 2017, 7:10am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/21 "2017-07-07T07:10:35Z")
I had this to say on the subject on facebook… > [@](#): > > [http://www.nationalreview.com/article/449079/charlie-gard-united-kingdom-court-defies-parents-wishes-rare-disease-die](http://www.nationalreview.com/article/449079/charlie-gard-united-kingdom-court-defies-parents-wishes-rare-disease-die) > This piece is problematic for a number of reasons. > > First: an infant is suffering from a debilitating, painful, terminal disease which they will not recover from. They will almost certainly not make it to adulthood. It’s entirely reasonable to start talking about palliative care in this case. It’s entirely reasonable to say that a child suffering from intense pain, with severe brain damage and a miserable prognosis, should not necessarily be kept alive through any means necessary. Holding out for a miracle is downright cruel. > > Beyond that, even assuming that he could be kept alive, and that such a life is anything other than a living hell, the knee-jerk response here is still, “Save his life at any cost!” Which is absurd. Healthcare, like literally any other good, has a limited supply, and we need to apportion it somehow. How much has been spent on this case, where the best realistic case is a child who suffers for a while longer before dying? Meanwhile, how many lives could be saved if we spent that money on mosquito nets, or antimalarials, or water purification, or basic care, or god knows how many other far more valuable medical interventions? > > But even more than that, National Review objects to state-run healthcare, and they’ve run articles objecting to state-run healthcare on precisely the grounds that it leads to cases like Charlie Gard, where rationing means we cannot throw an infinite amount of money at lost causes. But do you know what this case would look like in a private health care system? > > “Your son has an incurable disease. It will cost you $10000 a week to keep him alive, and far more if you want us to try to treat him, and we don’t really know how to handle this. Also, as long as you can pay up, we’re perfectly fine dedicating time and resources to him, above and beyond people who we actually could help but who can’t afford treatment.” > > Assuming, for the moment, that Mr. Gard and Mrs. Yates are not millionaires, Charlie’s story would end at the bottom of an emergency room balance sheet, because they simply could not afford the treatments necessary. Assuming they are, it would still be a massive expenditure of resources that would be better spent elsewhere. > > This case is tragic. But this kind of thinking doesn’t help. This thread more specifically deals with the question of the child’s suffering, and in this case, I am pretty firmly on the side of euthanasia. We have an infant, not even self-aware, suffering from a terminal, degenerative disease. There is little to no evidence that the cure proposed would have any effect. This child is probably in great pain. Is holding out for a miracle really worth prolonging his suffering? I don’t think it’s fair to refer to his parents as rational actors here. And I’m not sure why the state deciding on this case is so dangerous. Because it’s a slippery slope? I’m reminded of the people terrified that legal euthanasia would be a slippery slope to poor or disabled people being pressured into death - something which never happened. ---
**Author:** ![clairobscur](https://avatars.discourse-cdn.com/v4/letter/c/839c29/32.png) [@clairobscur](https://boards.straightdope.com/u/clairobscur)\ **Post date:** [July 7, 2017, 7:28am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/22 "2017-07-07T07:28:23Z")
> [@John\_Mace](#): > > However, it wold seem that is the parents’ decision to make. We’re not talking about an adult with a DO NOT RESUSCITATE document one can reference. I’m not sure why. The decision must be made in the best interest of the child, not of the parents, and there’s no guarantee that the parents will make the best choice, for a variety of reasons. Maybe that in this case, it’s not obvious what the best decision is, but you can easily envision a situation when the parent’s choice would be considered obviously moronic by 99% of the population. So, it makes total sense to me that courts should be involved when the medical staff (who is supposed to know better WRT medical outcomes) think that the parents don’t act in the best interests of the child. ---
**Author:** ![clairobscur](https://avatars.discourse-cdn.com/v4/letter/c/839c29/32.png) [@clairobscur](https://boards.straightdope.com/u/clairobscur)\ **Post date:** [July 7, 2017, 7:42am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/23 "2017-07-07T07:42:39Z")
> [@adaher](#): > > Not to mention, when you get into the “who decides”? issue, I’m not sure how Europe considers it logical that the state should be the ultimate arbiter of when people have to die. That’s traditionally been a family decision in the absence of a living will. Having the state usurp this decision is very dangerous. I’m not sure why you would assume that relatives would necessarily be best qualified to make a medical decision. For instance, if it was only up to them, one of my brothers would have you kept on machines long after you have begun to decompose, and another would have you euthanatized as soon as your pinkie finger is infected (exagerating, of course, but the issue did come up when yet another brother was in a critical condition). I would be wary of either making a medical decision for me (and even assuming that something like a “living will” exists in your country, you can’t have in mind all the possible situations you can find yourself in, once again thinking of this brother). When all is said and done, medical experts and dispassionate magistrates are likely to be best able to make a decision that is in your best interest than relatives ruled by emotions, holding random weird beliefs or medical theories of their own, in denial, motivated by greed, etc… ---
**Author:** ![Budget\_Player\_Cadet](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/budget_player_cadet/32/205_2.png) [@Budget\_Player\_Cadet](https://boards.straightdope.com/u/Budget_Player_Cadet)\ **Post date:** [July 7, 2017, 7:47am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/24 "2017-07-07T07:47:04Z")
> [@adaher](#): > > Not to mention, when you get into the “who decides”? issue, I’m not sure how Europe considers it logical that the state should be the ultimate arbiter of when people have to die. That’s traditionally been a family decision in the absence of a living will. Having the state usurp this decision is very dangerous. This family is willing to spend more money than I will likely ever have to give their child a therapy that stands virtually no chance of working and prolong his suffering. I don’t think this speaks well of the family as the ultimate arbiter of when people have to die. ---
**Author:** ![kambuckta](https://avatars.discourse-cdn.com/v4/letter/k/53a042/32.png) [@kambuckta](https://boards.straightdope.com/u/kambuckta)\ **Post date:** [July 7, 2017, 7:49am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/25 "2017-07-07T07:49:09Z")
As mentioned, this has nothing to do with the NHS, but is a call made by Charlie’s medical team and backed up by the courts and determined to be in the child’s best interests. What the parents think, believe or hope has no bearing on what Charlie is going through now, and what he might have to go through if sent off to the US on some heroic exercise in experimental bullshit. And if the parents hadn’t managed to raise \> $1.6m via online fundraising, the whole drama would be moot anyway. Let the poor little tyke go for goodness sakes. Enough is enough. ☹ ---
**Author:** ![adaher](https://avatars.discourse-cdn.com/v4/letter/a/dec6dc/32.png) [@adaher](https://boards.straightdope.com/u/adaher)\ **Post date:** [July 7, 2017, 8:13am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/26 "2017-07-07T08:13:46Z")
It’s not up to the state to decide if life is worth living. This isn’t a slippery slope. It’s already at the point where I wouldn’t take a relative to a British hospital if they might be terminal. No guarantee they’ll be permitted to leave alive. ---
**Author:** ![kambuckta](https://avatars.discourse-cdn.com/v4/letter/k/53a042/32.png) [@kambuckta](https://boards.straightdope.com/u/kambuckta)\ **Post date:** [July 7, 2017, 8:23am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/27 "2017-07-07T08:23:17Z")
> [@adaher](#): > > It’s not up to the state to decide if life is worth living. This isn’t a slippery slope. It’s already at the point where I wouldn’t take a relative to a British hospital if they might be terminal. No guarantee they’ll be permitted to leave alive. Not as simple as that. Charlie’s med team have just advised that moving him to the US to undertake experimental treatment would cause him undue suffering and pain. They have not decided his life is not worth living at all. ---
**Author:** ![Budget\_Player\_Cadet](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/budget_player_cadet/32/205_2.png) [@Budget\_Player\_Cadet](https://boards.straightdope.com/u/Budget_Player_Cadet)\ **Post date:** [July 7, 2017, 8:58am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/28 "2017-07-07T08:58:47Z")
> [@adaher](#): > > It’s not up to the state to decide if life is worth living. This isn’t a slippery slope. It’s already at the point where I wouldn’t take a relative to a British hospital if they might be terminal. No guarantee they’ll be permitted to leave alive. Well, granted, if they were stuck in a permanent vegetative state where they couldn’t speak, couldn’t respond, were in constant pain, and wouldn’t get better, then yeah, you might not be allowed to take them across the world to undergo treatment that would exacerbate their suffering with no hope of success. I fail to see how this is a bad thing - in that situation, you are effectively torturing your relatives. Let me ask you this - if you had to choose between dying now, or dying in 3 weeks, but you spend those three weeks being constantly tortured in increasingly painful and horrific ways, which would you choose? Only an absolute sadist would subject someone else to those three weeks of torture. At a certain point it’s time to drop the feeding tube, crank up the morphine, and say goodbye. ---
**Author:** ![elbows](https://avatars.discourse-cdn.com/v4/letter/e/b3f665/32.png) [@elbows](https://boards.straightdope.com/u/elbows)\ **Post date:** [July 7, 2017, 12:08pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/29 "2017-07-07T12:08:04Z")
Yeah, as much as everyone is desperately trying to make this about money or overreach by the dr/hospital, if you read the decisions it is clearly entirely about extending or ending his suffering. Should the parents emotion be allowed to override knowledgeable experts insisting extending his life is extending ihs suffering? THAT’S the real question that should be being discussed. (But, of course, is not!) If it were reversed, the parents convinced that the Drs were endlessly trying no hope treatments that were only extending the child’s suffering, would they be allowed to override the Drs? Would the courts support them in doing so? I should hope so! I should hope the courts main concern is always the patient’ s suffering. ---
**Author:** ![adaher](https://avatars.discourse-cdn.com/v4/letter/a/dec6dc/32.png) [@adaher](https://boards.straightdope.com/u/adaher)\ **Post date:** [July 7, 2017, 12:50pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/30 "2017-07-07T12:50:09Z")
Problem is, that logic just leads to deciding for competent patients as well. That’s not even a slippery slope. And drawing the line at competence isn’t enough, since most patients will enter an incompetent phase at some point. Is the NHS bound to respect patient’s wishes when they demand aggressive care for their terminal illnesses? Or does the “choice” only extend in one direction? Choose death or we’ll choose it for you? ---
**Author:** ![Novelty\_Bobble](https://avatars.discourse-cdn.com/v4/letter/n/a3d4f5/32.png) [@Novelty\_Bobble](https://boards.straightdope.com/u/Novelty_Bobble)\ **Post date:** [July 7, 2017, 12:51pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/31 "2017-07-07T12:51:49Z")
> [@elbows](#): > > Yeah, as much as everyone is desperately trying to make this about money or overreach by the dr/hospital, if you read the decisions it is clearly entirely about extending or ending his suffering. > > Should the parents emotion be allowed to override knowledgeable experts insisting extending his life is extending ihs suffering? THAT’S the real question that should be being discussed. (But, of course, is not!) > > If it were reversed, the parents convinced that the Drs were endlessly trying no hope treatments that were only extending the child’s suffering, would they be allowed to override the Drs? Would the courts support them in doing so? I should hope so! > > I should hope the courts main concern is always the patient’ s suffering. I agree absolutely. I think anyone seeking to voice opinion on this should read the judgement transcript that AK84 linked to. It is clear from any dispassionate reading that the court and the medical personnel have the child’s best interests front and center. In cases such as this it is entirely possible that the parents will seek out even a tiny, tiny chance of success, even when this is against the best interests of the child. Someone has to stand as a honest and unbiased broker in this and I trust the courts to do so. ---
**Author:** ![adaher](https://avatars.discourse-cdn.com/v4/letter/a/dec6dc/32.png) [@adaher](https://boards.straightdope.com/u/adaher)\ **Post date:** [July 7, 2017, 12:58pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/32 "2017-07-07T12:58:44Z")
Perhaps the courts should be able to decide if you can keep a pregnancy if it’s not in your best interest. The point here isn’t whether the court is right or wrong on the question. The court is right. The question is whether it is appropriate for a court to order a patient’s death. I don’t even think it’s appropriate for DOCTORS to make that call. Doctors can certainly refuse to perform any procedure they don’t wish to perform, but they cannot imprison a person. And please, don’t try to tell me that the NHS has nothing to do with this. The fact that the government pays for it is everything in this case. If the Gards were paying for his care they’d have control over whether he stayed in the hospital or not. ---
**Author:** ![madsircool](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/madsircool/32/3432_2.png) [@madsircool](https://boards.straightdope.com/u/madsircool)\ **Post date:** [July 7, 2017, 1:30pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/33 "2017-07-07T13:30:22Z")
> [@Budget\_Player\_Cadet](#): > > I had this to say on the subject on facebook… > > This thread more specifically deals with the question of the child’s suffering, and in this case, I am pretty firmly on the side of euthanasia. We have an infant, not even self-aware, suffering from a terminal, degenerative disease. There is little to no evidence that the cure proposed would have any effect. This child is probably in great pain. Is holding out for a miracle really worth prolonging his suffering? I don’t think it’s fair to refer to his parents as rational actors here. And I’m not sure why the state deciding on this case is so dangerous. Because it’s a slippery slope? I’m reminded of the people terrified that legal euthanasia would be a slippery slope to poor or disabled people being pressured into death - something which never happened. 1930s Germany had a program doing just what you promote…[Aktion T4 - Wikipedia](https://en.m.wikipedia.org/wiki/Aktion_T4) Lebensunwertes Leben, right? ---
**Author:** ![John\_Mace](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/john_mace/32/185_2.png) [@John\_Mace](https://boards.straightdope.com/u/John_Mace)\ **Post date:** [July 7, 2017, 1:37pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/34 "2017-07-07T13:37:25Z")
> [@clairobscur](#): > > I’m not sure why. The decision must be made in the best interest of the child, not of the parents, and there’s no guarantee that the parents will make the best choice, for a variety of reasons. Maybe that in this case, it’s not obvious what the best decision is, but you can easily envision a situation when the parent’s choice would be considered obviously moronic by 99% of the population. > > So, it makes total sense to me that courts should be involved when the medical staff (who is supposed to know better WRT medical outcomes) think that the parents don’t act in the best interests of the child. If we were talking about saving the child’s life, I might agree. But we’re not. There are all sorts of decisions that parents make every day that may or may not be “in the best interest of the child”. There is never any guarantee that the parents will make the best choice, nor is there always a way to determine which choice is the best. The state should be required to show more than that if it wants to step in. ---
**Author:** ![clairobscur](https://avatars.discourse-cdn.com/v4/letter/c/839c29/32.png) [@clairobscur](https://boards.straightdope.com/u/clairobscur)\ **Post date:** [July 7, 2017, 1:47pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/35 "2017-07-07T13:47:03Z")
> [@adaher](#): > > It’s not up to the state to decide if life is worth living. Why not? Given that we’re talking about a baby, it has to be up to someone who isn’t the patient himself. And as I already wrote, I don’t partcularly trust the parents to make the best decision. > [@](#): > > Problem is, that logic just leads to deciding for competent patients as well. That’s not even a slippery slope. That’s definitely a slippery slope. In fact, when a competent patient preference is ignored, it’s by _denying_ him the right to die, in most countries. ---
**Author:** ![Aspidistra](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/aspidistra/32/3894_2.png) [@Aspidistra](https://boards.straightdope.com/u/Aspidistra)\ **Post date:** [July 7, 2017, 1:47pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/36 "2017-07-07T13:47:21Z")
Yes, most civilised countries have a very high bar for what amount of “not in the best interests of the child” decision-making is required before the State steps in and transfers their decision-making power to another party. And in this case, the decision-making of the parents appears to have been sufficiently bad to have cleared that bar, in the opinions of -A team of doctors -And a court -And another court -And \*another \*court And taking away the ability of parents to make decisions on behalf of their children is in fact a thing that happens all the time, which is why all civilised countries have some sort of department of children’s welfare to do this kind of thing. This case is only unusual in that it’s fortunately highly rare that an infant is dying, and the choice of bests interests chiefly revolves around “in pain” or “not in pain” ---
**Author:** ![CarnalK](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/carnalk/32/486_2.png) [@CarnalK](https://boards.straightdope.com/u/CarnalK)\ **Post date:** [July 7, 2017, 1:50pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/37 "2017-07-07T13:50:52Z")
> [@adaher](#): > > And please, don’t try to tell me that the NHS has nothing to do with this. The fact that the government pays for it is everything in this case. If the Gards were paying for his care they’d have control over whether he stayed in the hospital or not. Was that fact part of the hospital’s legal argument? ---
**Author:** ![Northern\_Piper](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/northern_piper/32/5304_2.png) [@Northern\_Piper](https://boards.straightdope.com/u/Northern_Piper)\ **Post date:** [July 7, 2017, 1:50pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/38 "2017-07-07T13:50:59Z")
> [@adaher](#): > > Or does the “choice” only extend in one direction? Choose death or we’ll choose it for you? No, at least in Canada. There have been court cases where the courts have overridden the parents’ refusal to provide treatment where the treatment would save the child’s life but the parents refuse. It’s often in the context of religious objections to blood transfers. The courts generally rule in favour of the hospital giving the child the blood transfusion. The question is always the best interests of the child. If the parents’ actions are likely to cause the child needless pain and suffering, or put the child at needless risk, the courts will rule against the parents. ---
**Author:** ![Northern\_Piper](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/northern_piper/32/5304_2.png) [@Northern\_Piper](https://boards.straightdope.com/u/Northern_Piper)\ **Post date:** [July 7, 2017, 1:54pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/39 "2017-07-07T13:54:17Z")
> [@adaher](#): > > And please, don’t try to tell me that the NHS has nothing to do with this. The fact that the government pays for it is everything in this case. If the Gards were paying for his care they’d have control over whether he stayed in the hospital or not. Except the parents have apparently raised over ₤1.3 million, as mentioned in the article you cite. They’re not asking for NHS to pay it. ---
**Author:** ![madsircool](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/madsircool/32/3432_2.png) [@madsircool](https://boards.straightdope.com/u/madsircool)\ **Post date:** [July 7, 2017, 1:56pm UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/40 "2017-07-07T13:56:13Z")
> [@Northern\_Piper](#): > > No, at least in Canada. There have been court cases where the courts have overridden the parents’ refusal to provide treatment where the treatment would save the child’s life but the parents refuse. It’s often in the context of religious objections to blood transfers. The courts generally rule in favour of the hospital giving the child the blood transfusion. > > The question is always the best interests of the child. If the parents’ actions are likely to cause the child needless pain and suffering, or put the child at needless risk, the courts will rule against the parents. The key word here is needless. As long as there is a \>0% chance of positive treatment and the parents are willing to fight for the life of their child the government should not intervene. Doctors might be intellectually smart but they occasionally lack in emotional intelligence. [Previous page](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664.md?page=1) [Next page](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664.md?page=3)