# 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:** 1
**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, 2:07am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/1 "2017-07-07T02:07:10Z")
Here’s some fuel for the “death panels” fight. Vox explains: > **[Why terminally ill infant Charlie Gard’s case has created a global controversy](https://www.vox.com/identities/2017/7/6/15923758/charlie-gard-global-controversy-trump-francis)** > > Charlie's parents say the UK government is sentencing him to death. The truth is more complicated. > [@](#): > > For the past week, the British media has been inundated with photographs of one baby: the terminally ill Charlie Gard, whose court battle over his end-of-life care is raising uncomfortable questions about family, autonomy, and our level of public trust in institutions at large. > > Eleven-month-old Charlie has a hereditary, terminal disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). He has been suffering degenerative brain damage since birth, and cannot breathe without a ventilator or move without assistance. The condition is exceptionally rare; it’s believed to affect a few dozen children at most. > > Specialists at Great Ormond Street Hospital in London, where Charlie is being treated, came to the conclusion that it would be in Charlie’s best interest to remove the ventilator and begin to focus instead on helping him feel as comfortable as possible for his final days. A team of specialists in Barcelona, consulted for a second opinion, came to the same conclusion. > > But Gard’s parents, Chris Gard and Constance Yates, disagreed. They wanted to bring Charlie to America to undergo experimental treatment, called nucleoside bypass therapy, which they believed could slow the progression of the disease. They raised funds through GoFundMe — a staggering 1.3 million pounds (about $1.67 million US) — for the treatment, which, unlike general medical care in the UK, would not be covered by the UK’s National Health Service. Now recognizing that the parents are probably wrong here, this doesn’t seem like all that “polarizing” a case to me. They can get him treatment they can’t get him in the UK, so they have an absolute right to seek out that treatment. I could see if they wanted to pull him out for some kind of mystic mumbo jumbo acupuncture horticulture crap, but the treatment in question is science-based. The treatment would be “unlikely” to work, but that’s the parents’ decision, not the state’s. I also have to ask if this is related to the NHS. Can governments as a general principle deny aggressive treatments EVEN IF THE PARENTS CAN AFFORD IT if they deem it in the child’s best interest? Or is the unique setup of the NHS the only reason this kind of thing is legally possible? ---
**Author:** ![Bryan\_Ekers](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/bryan_ekers/32/183_2.png) [@Bryan\_Ekers](https://boards.straightdope.com/u/Bryan_Ekers)\ **Post date:** [July 7, 2017, 2:18am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/2 "2017-07-07T02:18:55Z")
If the parents (or their donors, anyway) can pay for Charlie to be hooked up to life-support not provided by the NHS and transported out of Britain, I fail to see a problem with the NHS relinquishing all responsibility in the case. However, I’m prepared to trust their expert medical opinion if they conclude that the process of transporting Charlie would cause him serious discomfort with no benefit, if they were refusing to release him on that basis. It looks like a variant on the Jahi McMath case to me, with a bit of Terri Schiavo thrown in. ---
**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, 2:25am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/3 "2017-07-07T02:25:01Z")
I’m not familiar with the former case, but in the Schiavo case there was never any question of the government having a say in her treatment. That was an interfamilial dispute. ---
**Author:** ![Tigers2B1](https://avatars.discourse-cdn.com/v4/letter/t/9fc29f/32.png) [@Tigers2B1](https://boards.straightdope.com/u/Tigers2B1)\ **Post date:** [July 7, 2017, 2:30am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/4 "2017-07-07T02:30:20Z")
FWIW, its my understanding that there are examples of other children, alive today, with this rate genetic disorder, because they received medical treatment. And BTW - regarding the panel’s decision, isn’t Charlie’s condition so rare, less than 20 globally, that predicting anything regarding outcomes really dicey? ---
**Author:** ![running\_coach](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/running_coach/32/15836_2.png) [@running\_coach](https://boards.straightdope.com/u/running_coach)\ **Post date:** [July 7, 2017, 2:41am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/5 "2017-07-07T02:41:39Z")
> [@Tigers2B1](#): > > FWIW, its my understanding that there are examples of other children, alive today, with this rate genetic disorder, because they received medical treatment. > > And BTW - regarding the panel’s decision, isn’t Charlie’s condition so rare, less than 20 globally, that predicting anything regarding outcomes really dicey? From [Wiki.](https://en.wikipedia.org/wiki/Mitochondrial_DNA_depletion_syndrome) > [@](#): > > The condition is typically fatal in infancy and early childhood, though some have survived to their teenage years with the myopathic variant and some have survived into adulthood with the SUCLA2 encephalomyopathic variant. I’m guessing that young Charlie doesn’t have these variants. ---
**Author:** ![AK84](https://avatars.discourse-cdn.com/v4/letter/a/85e7bf/32.png) [@AK84](https://boards.straightdope.com/u/AK84)\ **Post date:** [July 7, 2017, 3:23am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/6 "2017-07-07T03:23:42Z")
The issue is not “ **Death panels** ”. Or even NHS funding. It is Charlie’s right to die with dignity under the European Convention on Human rights (Article 2). The issue would arise even if the UK had no UHC, so the point raised in the OP is irrelevant. It’s distinguishable case from other precedents on the matter due to the tender age of young Master Gard and the fact his parents have the funds to take him overseas. It’s not like he is an older person who has already lived a full life. The law may sometimes be an ass. On the whole, judges should try to avoid becoming one. In this matter, their Lordships have exchanged their wigs for Donkey ears. ---
**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, 3:37am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/7 "2017-07-07T03:37:52Z")
It is a horrible case, but it’s not a _payment_ or a UHC issue. Essentially, the courts have to balance Charlie’s right to have a slim chance of life with the new treatment, versus his right not to be pointlessly tortured. Not being a doctor, I have absolutely no idea what the relative probabilities are of the treatment helping Charlie to live, versus the probability that he’ll be pointlessly tortured then die. The doctors appear to believe that the chances of ‘pointlessly tortured’ are high enough not to attempt it, and the judges appear to agree with them. ---
**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, 3:40am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/8 "2017-07-07T03:40:47Z")
The reason I bring up the NHS is because I can’t see a private hospital claiming actual authority over a patient. In the US you don’t have to file a court case to remove your kid from a hospital. I can’t imagine US hospital saying, “Yeah, we’re keeping him because he has to die and your attempts to save him are abusive.” The NHS is part of the government and seems to be exercising government authority here. ---
**Author:** ![tim314](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/tim314/32/3468_2.png) [@tim314](https://boards.straightdope.com/u/tim314)\ **Post date:** [July 7, 2017, 3:43am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/9 "2017-07-07T03:43:19Z")
> [@Tigers2B1](#): > > isn’t Charlie’s condition so rare, less than 20 globally, that predicting anything regarding outcomes really dicey? The condition being rare doesn’t mean that all of its symptoms are rare. If I understand the situation correctly, one of those symptoms is that the disease has destroyed a good portion of his brain, and there’s no undoing this sort of damage. ---
**Author:** ![AK84](https://avatars.discourse-cdn.com/v4/letter/a/85e7bf/32.png) [@AK84](https://boards.straightdope.com/u/AK84)\ **Post date:** [July 7, 2017, 4:25am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/10 "2017-07-07T04:25:25Z")
> [@adaher](#): > > The reason I bring up the NHS is because I can’t see a private hospital claiming actual authority over a patient. In the US you don’t have to file a court case to remove your kid from a hospital. I can’t imagine US hospital saying, “Yeah, we’re keeping him because he has to die and your attempts to save him are abusive.” The NHS is part of the government and seems to be exercising government authority here. No. It is the Great Ormond Street Hospital Administration which went to Court to get an order to permit them to end Master Gard’s care, over parental objections. The laws vary world over, but AFAIK a hospital can in most places “pull the plug” over the families objections. There was a Canadian Supreme Court case on this matter recently. Here is an [example (for aging parents](https://www.forbes.com/sites/carolynrosenblatt/2011/12/01/dont-pull-the-plug-a-familys-battle-with-the-hospital/#4d9a99203a04)) in the US. TL:DR Hospitals are generally not compelled to continue pointless treatment. [QUOTE=tim314] The condition being rare doesn’t mean that all of its symptoms are rare. If I understand the situation correctly, one of those symptoms is that the disease has destroyed a good portion of his brain, and there’s no undoing this sort of damage. [/QUOTE] Brain damage is reversible; specifically using stem cells. Its a new and experimental treatment, but pretty much that is all that remains. ---
**Author:** ![running\_coach](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/running_coach/32/15836_2.png) [@running\_coach](https://boards.straightdope.com/u/running_coach)\ **Post date:** [July 7, 2017, 4:34am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/11 "2017-07-07T04:34:27Z")
> [@AK84](#): > > Brain damage is reversible; specifically using stem cells. Its a new and experimental treatment, but pretty much that is all that remains. How experimental? Human trials or petri dishes/small lab animals? ---
**Author:** ![AK84](https://avatars.discourse-cdn.com/v4/letter/a/85e7bf/32.png) [@AK84](https://boards.straightdope.com/u/AK84)\ **Post date:** [July 7, 2017, 4:49am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/12 "2017-07-07T04:49:21Z")
> [@running\_coach](#): > > How experimental? Human trials or petri dishes/small lab animals? Actually reversed damage in some patients. ---
**Author:** ![PatrickLondon](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/patricklondon/32/4422_2.png) [@PatrickLondon](https://boards.straightdope.com/u/PatrickLondon)\ **Post date:** [July 7, 2017, 5:22am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/13 "2017-07-07T05:22:49Z")
The issue isn’t the rights of either parents or doctors. It’s about their shared _responsibilities_ for the child, and what is in his best interests. Funding and financial concerns don’t come into it: as far as the doctors are concerned, it’s about what is their clinical duty. (It seems as though this experimental treatment isn’t yet at a clinical experiment phase anyway, according to one report I’ve read): [https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf](https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf) [https://www.theguardian.com/commentisfree/2017/jul/06/charlie-gard-heartbreaking-society-cant-shun-experts](https://www.theguardian.com/commentisfree/2017/jul/06/charlie-gard-heartbreaking-society-cant-shun-experts) ---
**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, 5:35am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/14 "2017-07-07T05:35:24Z")
The idea that a patient must die seems to be a rather novel interpretation of “their clinical duty”. ---
**Author:** ![AK84](https://avatars.discourse-cdn.com/v4/letter/a/85e7bf/32.png) [@AK84](https://boards.straightdope.com/u/AK84)\ **Post date:** [July 7, 2017, 5:42am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/15 "2017-07-07T05:42:56Z")
> [@PatrickLondon](#): > > The issue isn’t the rights of either parents or doctors. It’s about their shared _responsibilities_ for the child, and what is in his best interests. Funding and financial concerns don’t come into it: as far as the doctors are concerned, it’s about what is their clinical duty. (It seems as though this experimental treatment isn’t yet at a clinical experiment phase anyway, according to one report I’ve read): > > [https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf](https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf) > > [https://www.theguardian.com/commentisfree/2017/jul/06/charlie-gard-heartbreaking-society-cant-shun-experts](https://www.theguardian.com/commentisfree/2017/jul/06/charlie-gard-heartbreaking-society-cant-shun-experts) Absolutely true. And I think the Courts have got it wrong. Due to his age it’s something that should be tried. ---
**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, 5:47am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/16 "2017-07-07T05:47:28Z")
> [@running\_coach](#): > > How experimental? Human trials or petri dishes/small lab animals? From what I heard on NPR today, Charlie has a mutation that is different from the one that other children had who got that treatment. Same symptoms, but different mutation, so the treatment is almost certain not to work. 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. ---
**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, 5:53am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/17 "2017-07-07T05:53:24Z")
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. ---
**Author:** ![AK84](https://avatars.discourse-cdn.com/v4/letter/a/85e7bf/32.png) [@AK84](https://boards.straightdope.com/u/AK84)\ **Post date:** [July 7, 2017, 6:13am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/18 "2017-07-07T06:13:08Z")
As I pointed out, it not just “Europe”. Many countries including some US State authorize medical professionals to overrule family member wishes. ---
**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, 6:20am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/19 "2017-07-07T06:20:48Z")
To the extent of holding a patient prisoner? ---
**Author:** ![Gestalt](https://avatars.discourse-cdn.com/v4/letter/g/90ced4/32.png) [@Gestalt](https://boards.straightdope.com/u/Gestalt)\ **Post date:** [July 7, 2017, 6:31am UTC](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664/20 "2017-07-07T06:31:33Z")
In America, the doctor/hospital can refuse treatment, but I don’t think they can prohibit another person or institution from providing treatment. [Next page](https://boards.straightdope.com/t/the-charlie-gard-case-terminally-ill-baby-and-parental-rights/790664.md?page=2)