# Question about British NHS ending care for terminally ill children **URL:** \ **Category:** Factual Questions\ **Created:** [November 15, 2023, 1:16am UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157 "2023-11-15T01:16:16Z")\ **Posts on this page:** 16\ **Page:** 1
**Author:** ![X.L.Lent](https://avatars.discourse-cdn.com/v4/letter/x/a5b964/32.png) [@X.L.Lent](https://boards.straightdope.com/u/X.L.Lent)\ **Post date:** [November 15, 2023, 1:16am UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/1 "2023-11-15T01:16:16Z")
From time to time I have read of cases where the British National Heath Service has decided to end treatment for terminally ill children and won’t allow the parents to take thier child elsewhere for treatment. The cases of Indi Gregory, Alfie Evans and Charlie Gard are a few examples I have found searching by the internet. While I can see the reasons for the NHS’s decision, I don’t understand why the parents are not allowed to take thier child elsewhere - even if the parents are paying all the expenses themselves. It’s not going to cost the British taxpayer anything. As long as the parent’s aren’t doing something crazy stupid like take the child to a witch doctor I don’t see what the problem is. Is there anyone here from the UK who can explain this? In the USA these cases are often sited as an one of the “evils” of socialied medicine and why we should not have a similar system here. ---
**Author:** ![UDS1](https://avatars.discourse-cdn.com/v4/letter/u/e47774/32.png) [@UDS1](https://boards.straightdope.com/u/UDS1)\ **Post date:** [November 15, 2023, 2:32am UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/2 "2023-11-15T02:32:46Z")
As I understand it, it’s the NHS that provides - or doesn’t provide - the treatment. Either way, that decision is justified by an appeal to the child’s best interests. If the decision is not to provide treatment, and the parents disagree with it, they can take the matter to the courts, seeking to have the NHS decision reviewed or set aside. But once the matter is in court, the court will make judgments, again on the basis of the child’s best interests, as to what care should be provided and in particular whether it’s in the child’s interests to receive treatments from other providers. The child’s interests are rarely affected by who provides the treatment. If the treatment options offered to the child have no hope of success and will be burdensome (painful, debilitating) then it’s hard to construct an argument that it’s not in the child’s interest to get that treatment from one provider but is in the child’s interest to get that treatment from another. ---
**Author:** ![wolfpup](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/wolfpup/32/10618_2.png) [@wolfpup](https://boards.straightdope.com/u/wolfpup)\ **Post date:** [November 15, 2023, 2:58am UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/3 "2023-11-15T02:58:16Z")
As one might have suspected, this has nothing to do with “ending care for terminally ill children”. All three children cited in the OP were born with incurable and unmanageable genetic conditions that were invariably fatal. In the Charlie Gard case, the NHS even offered tp pay for a purely experimental treatment in New York and pay for a flight there, but the patient’s condition worsened before this was possible. According to the stories, in cases where parents wanted to pursue additional treatments but were refused it had nothing to do with cost, but rather about protecting the best interests of a vulnerable and dying child against medical quackery., and in some of the major cases the refusals were not by the NHS, but by hospitals and courts. > **[Indi Gregory, baby girl at centre of legal battle, dies after life support...](https://www.theguardian.com/uk-news/2023/nov/13/indi-gregory-baby-girl-at-centre-of-legal-battle-dies-after-life-support-removed)** > > Eight-month-old with incurable condition dies in mother’s arms hours after being taken to a hospice > **[Alfie Evans case](https://en.wikipedia.org/wiki/Alfie_Evans_case)** > > Alfie James Evans (9 May 2016 – 28 April 2018), was an infant boy from Liverpool with an undiagnosed neurodegenerative disorder, later revealed to be GABA-transaminase deficiency. The medical team and the child's parents disagreed about whether to maintain his life support or to withdraw it, resulting in a legal battle. Alder Hey Children's NHS Foundation Trust sought a declaration that continued mechanical ventilation was "unkind and inhumane", and not in the child's best interests. Alfie' The... [Charlie Gard case - Wikipedia](https://en.wikipedia.org/wiki/Charlie_Gard_case) ---
**Author:** ![Princhester](https://avatars.discourse-cdn.com/v4/letter/p/3e96dc/32.png) [@Princhester](https://boards.straightdope.com/u/Princhester)\ **Post date:** [November 15, 2023, 3:13am UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/4 "2023-11-15T03:13:26Z")
> [@X.L.Lent](#): > > As long as the parent’s aren’t doing something crazy stupid like take the child to a witch doctor I > don’t see what the problem is. These things are a matter of judgement but having read articles about various of the cases you mention (and other cases linked off those articles) it seems to me that the parents were planning on doing something at least arguably crazy stupid – in general their plans were to either keep a child that was brain-dead and/or in significant pain on constant life-support for no reason (and at taxpayer’s expense) or fly the child somewhere else, to the same effect. There are certainly quack doctors willing to prey on the desperation of heartbroken parents. There are also religious extremists who have absolute views about the sanctity of life and simply do not care if the child is brain-dead or in severe pain as their only consideration is their absolutist view. These two points seem to have been a substantial factor in the cases you mention. Whether one considers the parents’ views to be “crazy stupid” or not is an issue of judgement but either way after numerous appeals the courts’ views were that prolonging the agony was not in the child’s best interests. The parents’ distraught judgment is not necessarily correct, nor the only relevant factor. ---
**Author:** ![SanVito](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/sanvito/32/2805_2.png) [@SanVito](https://boards.straightdope.com/u/SanVito)\ **Post date:** [November 15, 2023, 9:00am UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/5 "2023-11-15T09:00:03Z")
> [@wolfpup](#): > > According to the stories, in cases where parents wanted to pursue additional treatments but were refused it had nothing to do with cost, but rather about protecting the best interests of a vulnerable and dying child against medical quackery., and in some of the major cases the refusals were not by the NHS, but by hospitals and courts. Yes, it’s this. It’s nothing to do with ‘the NHS’ or socialised medicine having some weird grip on what care you can seek - if you have the money you’re at liberty to seek out whatever care you can afford, anywhere in the world, and as wolfgang referenced, often the NHS will pay for that treatment outside of NHS care. I have private healthcare through my job, I don’t have to use the NHS for specialist care if I don’t want to (although the best doctors are frequently operating within, rather than outside, the NHS - or both). Rather, it’s about individual doctors and hospitals acting in the best interests of the child, and occasionally, that means going to court to prevent a child being dragged around the world because the parents have some crackpot ideas which will result in the child suffering unnecessarily. These cases are always awful, and tragic, and a case of desperate parents wanting to do anything they can to save their child. But it’s about child protection, not NHS control of medical services. ---
**Author:** ![bob\_2](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/bob_2/32/3341_2.png) [@bob\_2](https://boards.straightdope.com/u/bob_2)\ **Post date:** [November 15, 2023, 9:42am UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/6 "2023-11-15T09:42:15Z")
Parents of terminally ill children are often not entirely rational. They want their precious baby to live and will do anything they can to achieve that - and who can blame them? This is a relatively modern problem. Not all that long ago, those children would not have survived at all, but modern medicine and equipment are capable of keeping a heart beating and lungs pumping long after the brain stops working. The decision to allow any patient, not just a child, should be allowed to die is very hard. In the vast majority of cases, relatives understand that the patient’s time has come, and I have no doubt that many people on this forum have had to deal with this heartbreaking problem at some time in their lives. But sometimes, and for many different reasons, relatives simply cannot accept it. It’s no surprise that cases involving babies, especially if cute pictures are available, garner the most publicity. ---
**Author:** ![md-2000](https://avatars.discourse-cdn.com/v4/letter/m/9d8465/32.png) [@md-2000](https://boards.straightdope.com/u/md-2000)\ **Post date:** [November 15, 2023, 2:08pm UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/7 "2023-11-15T14:08:02Z")
Ah yes, “death panels”. Doesn’t ObamaCare have them too? (Hint - sarcasm). > [@SanVito](#): > > Rather, it’s about individual doctors and hospitals acting in the best interests of the child, and occasionally, that means going to court to prevent a child being dragged around the world because the parents have some crackpot ideas which will result in the child suffering unnecessarily I recall a not too unrelated story in Canada several years ago. An elderly Jewish gentleman was in hospital with a terminal condition in pain. Apparently for some orthodox adherents, the rule is to preserve life at any cost. The family wanted the doctors to perform a procedure, adn the dcoctors refused. It ended up in court. The doctors argued the procedure would not affect the final outcome, would simply prolong the old man’s suffering. IIRC some of the doctors saidd they would not perform the procedure even if ordered by the courts because it violated their Hypocratic oath. (In the end, I believe the court declined to order the procedure). Once again, it was not the cost to the public health system that was the issue, it was the best interests of the patient. ---
**Author:** ![SanVito](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/sanvito/32/2805_2.png) [@SanVito](https://boards.straightdope.com/u/SanVito)\ **Post date:** [November 15, 2023, 3:00pm UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/8 "2023-11-15T15:00:25Z")
This must happen in the US too, surely? Or do the doctors work under instruction from the parents at all times? I should add, it’s not as if doctors in the NHS routinely override the wishes of patients and families. My 95 year old Dad is on his last legs (stage 4 COPD and a bunch of other things), but we were told that unless he or the person with Power of Attorney signed a Do Not Resuscitate order, they would be obliged to try and save him even if it was, ultimately, not in his best long term interests. It’s an ongoing discussion between ourselves and doctors. ---
**Author:** ![doreen](https://avatars.discourse-cdn.com/v4/letter/d/858c86/32.png) [@doreen](https://boards.straightdope.com/u/doreen)\ **Post date:** [November 15, 2023, 3:06pm UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/9 "2023-11-15T15:06:39Z")
> [@SanVito](#): > > This must happen in the US too, surely? Or do the doctors work under instruction from the parents at all times? I wouldn’t say the doctors work under the instructions of the parents ( or next of kin in the case of an adult.) so much as I find it difficult to imagine a doctor/hospital refusing to provide care that someone is willing to pay for unless it actively harms the patient in some way other than prolonging a painful life. The other way around , where the doctor/hospital insists on providing care that the parent doesn’t want and gets a court order allowing them to provide that care is another story - that is not uncommon. ---
**Author:** ![SanVito](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/sanvito/32/2805_2.png) [@SanVito](https://boards.straightdope.com/u/SanVito)\ **Post date:** [November 15, 2023, 3:29pm UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/10 "2023-11-15T15:29:57Z")
I did a quick google and found [this article from a US journal](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5712473/), which suggests that similar court cases do happen in the US, where physicians want to resist certain treatments, but the US courts tend to side with the parents. So the approach may not differ greatly between US and UK doctors/hospitals, but more in terms of how the law handles it. Either way, it isn’t about taxpayers’ money. ---
**Author:** ![Kent\_Clark](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/kent_clark/32/105_2.png) [@Kent\_Clark](https://boards.straightdope.com/u/Kent_Clark)\ **Post date:** [November 15, 2023, 3:52pm UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/11 "2023-11-15T15:52:47Z")
One may recall the landmark case of [Karen Quinlan](https://en.wikipedia.org/wiki/Karen_Ann_Quinlan) back in the 1970s. **Both** her parents and the doctors wanted to remove her from a ventilator, but the state’s attorney claimed it would be a homicide and threatened to arrest everyone involved. ---
**Author:** ![Cervaise](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/cervaise/32/16693_2.png) [@Cervaise](https://boards.straightdope.com/u/Cervaise)\ **Post date:** [November 15, 2023, 5:26pm UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/12 "2023-11-15T17:26:12Z")
> [@SanVito](#): > > This must happen in the US too, surely? Or do the doctors work under instruction from the parents at all times? More commonly, treatment in the US is dictated by what the for-profit insurance company is willing to pay for. They routinely block expensive procedures **[even when the doctor and patient are in agreement about what they want to do.](https://www.propublica.org/article/blue-cross-proton-therapy-cancer-lawyer-denial)** ---
**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:** [November 15, 2023, 7:27pm UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/13 "2023-11-15T19:27:56Z")
> [@Cervaise](#): > > They routinely block expensive procedures **[even when the doctor and patient are in agreement about what they want to do.](https://www.propublica.org/article/blue-cross-proton-therapy-cancer-lawyer-denial)** Yes, but that’s okay because it’s capitalism, not that horrid socialism. ---
**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:** [November 16, 2023, 8:08am UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/14 "2023-11-16T08:08:43Z")
To be fair, it can happen that both patients (and their families) and clinicians argue with an NHS organisation - but usually that’s over experimental treatments or those that haven’t been ruled as cost-effective across the whole population, and for which there are effective alternatives, so rarely. ---
**Author:** ![Really\_Not\_All\_That\_Bright](https://avatars.discourse-cdn.com/v4/letter/r/e8c25b/32.png) [@Really\_Not\_All\_That\_Bright](https://boards.straightdope.com/u/Really_Not_All_That_Bright)\ **Post date:** [November 16, 2023, 12:41pm UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/15 "2023-11-16T12:41:49Z")
> [@SanVito](#): > > This must happen in the US too, surely? Or do the doctors work under instruction from the parents at all times? In the US, it is generally either a dispute between the hospital and the patient or medical decision maker, or between the decision maker and other family members (as in the Terri Schiavo case). ---
**Author:** ![Hari\_Seldon](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/hari_seldon/32/5173_2.png) [@Hari\_Seldon](https://boards.straightdope.com/u/Hari_Seldon)\ **Post date:** [November 25, 2023, 12:11am UTC](https://boards.straightdope.com/t/question-about-british-nhs-ending-care-for-terminally-ill-children/993157/16 "2023-11-25T00:11:25Z")
I knew of a case of a very famous mathematician who suffered a stroke and was aphasic although he could say yes or no. He had given former student power of attorney and made it clear no extraordinary measures were to be taken if he was reduced to a vegetative state. At that point, I was even able to get the former student a yes/no question of interest to me and got an answer. I was present, years earlier, when someone asked him if any members of his family had escaped the holocaust and he said “No”. Then he suffered a second devastating stroke and was brain dead. Former student told the hospital to pull the plug. Before they did so an ultraorthodox distant cousin turned up and threatened to sue the hospital if they made any attempt to let him die. So he survived for over a year in that state and finally stopped.