Charlie Gard, legal battle over terminally ill 10mo in UK

[jozina]

Well put with all you've said Palimpsest.

I'm glad they didn't end up taking him home as callous as that may sound. It would put an enormous burden on the system to set that sort of precedent. Do you let every family with a loved one dying at home head home with that equipment and a medical/nursing team to let them die and give the family peace of mind? Or just those who've dragged the case through courts and kicked up a huge fuss in the media?

Extubate a kid with the sort of problems they described he had and they die.  Quickly.  Very quickly. Spending thousands of pounds and directing all those resources to a futile case so his parents feel better about his death may sound nice however it's just such a massive waste of everything. What about the kids who could otherwise have used those resources and survived?

May he rest in peace and may his parents eventually reach some peace with what has happened.

[unsafetydancer]

This whole thing has been really sad and the way the press and certain politicians have behaved has been appalling.

This article does a very good job of explaining the judgement made and debunking a lot of the myths.

https://medium.com/@charlesarthur/charlie-gard-facts-medicine-and-right-wing-fictions-e4b933ed8c12

Rest in Peace wee guy

[Jane M.]

This is mentally draining. I feel so sorry for his parents. 

RIP little angel.

[nastyhobbitses]

14 hours ago, SusanDelgado said:

If I see one more person say something like "this is what you get with socialized medicine" 

Extremely involved and devoted care for a terminal illness that costs you nary a penny? Yup, that's what you get with evil commie hospitals.

 

Also, I'm going to be very blunt here. I understand that the parents were going through hell. No one should have to bury a child or face the prospect of it. It's absolutely horrible. THAT BEING SAID, whenever they appealed for "more time" with Charlie, all I could think was that maybe they'd have had more quality time with him if they'd stopped going to court and causing a ruckus week after week, and instead focused on their little boy. I understand that they were fighting for their son, but after a certain point, it seemed like they cared more about the media circus than about their child's need to be cared for properly and to have his mom and dad by his side in his final days.

[seraaa]

4 minutes ago, nastyhobbitses said:

Extremely involved and devoted care for a terminal illness that costs you nary a penny? Yup, that's what you get with evil commie hospitals.

I can't wait until we vote in a government who will actually start resourcing the NHS properly again, not to show my political bias or anything

[nastyhobbitses]

34 minutes ago, seraaa said:

I can't wait until we vote in a government who will actually start resourcing the NHS properly again, not to show my political bias or anything

Me neither and I don't even live over there anymore (but might be able to move back, fingers crossed....)

I only had to use the NHS one time for something ridiculously minor (ear piercing got infected) while I was getting my MA, and I was so shocked that a doctor visit and antibiotics were only 10 USD. And that was just for the pills. How many people aren't breaking the bank to get a piddly little infection like what I had treated while it's a piddly little infection and not a huge problem, because of the NHS? How many people are ALIVE or have more life in the years they have because of the NHS? I don't understand people who want to get rid of it or don't want something like it everywhere. I really don't.

[Palimpsest]

4 hours ago, unsafetydancer said:

This article does a very good job of explaining the judgement made and debunking a lot of the myths.

https:[email protected] /charlie-gard-facts-medicine-and-right-wing-fictions-e4b933ed8c12

This is an excellent article. Thanks for posting it. I would encourage everyone to read it.

In my previous comments on this thread I have faulted the gutter press for winding people up.  That is because the legitimate news media (like the Guardian and Independent) have covered this case responsibly, carefully, and compassionately.

[sawasdee]

I have such anger with Dr Hirano. Reading all the reports, it seems that from mid December Charlie's deterioration was very fast. GOSH Reached out to Dr Hirano in January, but he never took up their invitation to examine Charlie until last week, and he never read the medical records or opinions. He just made statements claiming at first, the possibility of 11% to 50% improvement, and later 10%.  The treatment hadn't even been tested on mice - where was he getting these figures?

But the parents desperately clutched at the hope he seemed to offer, and still do not accept that Charlie's death was inevitable. They said in their statement after his death

: "Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you.

"We had the chance but we weren't allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy."

There was no chance. There was only the illusion being held out by Dr Hirano.

I think he is despicable, and hope he is investigated by an ethics panel for his behaviour in this case. And I hope Columbia reviews his tenure. The pain he has inflicted on Charlie's parents is unforgivable.

And I hope Charlie's case haunts his dreams.

[Ozlsn]

17 minutes ago, sawasdee said:

I have such anger with Dr Hirano. Reading all the reports, it seems that from mid December Charlie's deterioration was very fast. GOSH Reached out to Dr Hirano in January, but he never took up their invitation to examine Charlie until last week, and he never read the medical records or opinions. He just made statements claiming at first, the possibility of 11% to 50% improvement, and later 10%.  The treatment hadn't even been tested on mice - where was he getting these figures?

But the parents desperately clutched at the hope he seemed to offer, and still do not accept that Charlie's death was inevitable. They said in their statement after his death

: "Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you.

"We had the chance but we weren't allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy."

There was no chance. There was only the illusion being held out by Dr Hirano.

I think he is despicable, and hope he is investigated by an ethics panel for his behaviour in this case. And I hope Columbia reviews his tenure. The pain he has inflicted on Charlie's parents is unforgivable.

And I hope Charlie's case haunts his dreams.

Yes, to all of that. What makes me angriest is that if he'd reviewed the case earlier - and he could have reviewed scans and records at home, he didn't need to fly to London, they can email or courier copies - and then talked with the parents honestly - and again, he could have done this by Skype if the trip to London was too hard to manage - then they might have been able to accept the inevitable much earlier. Instead they clung desperately to the one thread of hope they had left, and exhausted themselves fighting. 

Looking at descriptions of the prognosis of this disease most babies die at around four months old. Charlie wasn't even identified as having an issue until 2 months old, and didn't have a definite diagnosis of which mutation it was until 3 months old. Even if he'd been able to start the nucleosides immediately, and they had had any effect, there was still three months of damage that I don't think could be undone.

Poor little boy.

[Mozzie]

I have very mixed feelings. I was shocked with the reports that his father Mr. Gard and his mother Ms. Yates were screaming and getting angry in court over the decisions not to keep their son alive. I agree it doesn't prove they're very mature or stable people with the care of a terminally ill child. On the other hand, no-one probably would react normally if their loved one was been removed from life support and on to eventual demise. 

I saw the news report from one of Charlie's god-parents saying they wanted to take him home and play with him and bathe him etc. like a normal child. I found that sad and naive: the boy was on terminal care in a hospital: did they imagine just taking him out of hospital would make him normal? 

It was sad he died within hours of being removed from ICU before they could even take him home or to hospice care. 

RIP

I also hope this circus doesn't affect GOSCH and its funding for other patients, if the social media has given it a bad name now.

23 hours ago, nastyhobbitses said:

Extremely involved and devoted care for a terminal illness that costs you nary a penny? Yup, that's what you get with evil commie hospitals.

The interesting thing is last night I was watching the YouTuber (Vegan Gains) with his Patreon subscription live stream and a fan asked 'what do you feel about the Charlie Gard case?'

VG commented 'who is he or she? I've never heard of such a person Charlie Gard.'

He then Googled the case and said 'well the thing is, in Canada where I live, the socialised medical system does place limits on how long people can be kept on life support/ICU if they are in a coma. It's to reduce costs for people who aren't going to be 'alive' again. 

"When you see the idea of people in a coma for months or years, that's in the USA. People pay for their treatment so can keep a patient 'alive' as long as they wish as long as they can afford the bills. However, since people can't afford life-saving care in the USA in all cases, that raises an interesting point about private and socialised healthcare."

 

[jozina]

I'm not sure that person would really know though. A few things come to mind:

-The public as a whole tend to have a fairly poor knowledge of rare and complicated medical things, which is totally understandable. One of my siblings was talking about this case and saying that it'd never happen here in Australia. I'm a doctor. I've worked in ICU and work in an area where a lot of my patients end up there. Things similar to this happen here. They were stunned.

-A coma isn't necessarily what people imagine. There's a wide range of what that can look like. People often use coma and persistent vegetative state interchangeably, though they're a little different.

-Life support and ICU are not what people imagine, especially the complexity and breadth of what each can encompass. There's an enormous range.

-And they're just wrong. Hassan Rasouli was kept on fairly invasive life support for over 3 years while a not dissimilar case went on in Ontario. The courts ruled in favour of his family and said that doctors require consent for removal of treatment. He was discharged to a private care facility after 3.5 years.

-There are 4000-16,000 people in the U.K. who are in a persistent vegetative state. They'll all be getting varying degrees of life support.

-I've seen patients on invasive life support for months or longer and I'm not in the USA. They are usually stepped down from ICU if they're stable and I'm sure that guy may not recognise the care they are receiving as being on life support.

-And people on many forms of life support are extremely vulnerable. They get infections very quickly and cannot clear them. People surviving for years is very uncommon because of that more than any removal of care.

Also the media I've seen is saying Charlie died in hospice, though there isn't a lot of hard factual information.

[sawasdee]

7 minutes ago, jozina said:

Hassan Rasouli was kept on fairly invasive life support for over 3 years while a not dissimilar case went on in Ontario. The courts ruled in favour of his family and said that doctors require consent for removal of treatment. He was discharged to a private care facility after 3.5 years.

The major difference between this and Charlie Gard is, I think, that t he latter was a minor. There is provision in UK law for a guardian to be appointed by the court, or for the court itself,  to examine the evidence presented by the medical experts and by the parents, and to determine the best interests of the minor. That is what happened in Charlie's case. The judge determined that in the light of all the evidence, Charlie's interests were not being served by keeping him alive. His is the overriding interest, not the parents.

[jozina]

Yes you're right, it was. Both cases centred around removal of care, though the reasoning both were brought to court was different. With Charlie it's that parental responsibility is not limitless and that children have rights distinct from their parents to appropriate medical care (be that receiving care or having it withdrawn). "Baby M" was a case in Alberta involving withdrawal of life support from a minor, though with a lot of other distressing things around it.

With Rasouli it was that the hospital argued withdrawal of care is not a process consent is required for, therefore they could limit cares without his family's consent.

Adults can also have guardians appointed by the courts here at least if no-one is acting in their best interest or if there are conflicts between people who have a say in their treatment.

[sawasdee]

I think guardians can be appointed for adults in the UK also, in specific circumstances.

I do feel that the judge's recommendation for mandatory mediation in such cases in the future is a good one, and certainly GOSH seemed to welcome the idea. Perhaps that would prevent such distressing cases being chewed over in the tabloid media, or used to make political points, or even used to raise public hysteria,as presumably the mediation would be private.

Perhaps in this particular case, mediators could have led Charlie's parents to see the reality of the situation, and they would have been spared the long drawn out, public ordeal.

 

[Gobbles]

Re: Socialized Medicine

There were a couple of articles in the German news as well, and they all agreed that something like that wouldn't have happened here in Germany. They all mention that the NHS has different rules. In Germany the parent's will is worth more. We do have some rules and for example people who don't want to give blood to their children due to religious reasons get the health care for their children removed, but deciding over the parents will if a child should die or live is not really possible. I know several people (through an online forum) who have children like Charlie at home with 24h care paid by insurance. (On a ventilator!) 

So all the people who go on and say that this happens with socialized medicine: Nope.

[sawasdee]

@Gobbles That's interesting. Does that mean that in Germany, the parents' rights overrule the welfare of the child? In this case, there was no definitive proof that Charlie was suffering pain (although many of his carers believed so), but if there were, would parents' rights mean that he would be kept alive despite that? Knowing that the ultimate prognosis was death? I know that painkillers are an option, but sometimes the pain outruns the relief possible without compromising life - what would happen then?

I think that also Charlie's needs went a great deal further than just a ventilator.

It's a horrible ethical quagmire. When should lack of/no quality of life overrule parents' rights?

I certainly don't know the answer - but I do feel, that in a case where the prognosis is as hopeless as Charlie's, there does come a time to call a halt. But who should have the right to do so? Does the child have any rights apart and separate from the parents? Should an advocate who is not emotionally involved act as a mouthpiece for a non communicative child? Who can possibly know the child's wishes - especially if, as in this case, he is too young to have them, let alone articulate them?

A minefield. But I truly believe, that in this case, everyone had Charlie's best interests at heart - the doctors, GOSH and the parents. (Maybe not Dr Hirano...)

[Shadoewolf]

One thing that still sticks out to me now that I've had time to think about it is there are still outlets and people trashing GOSH and everyone is about prayers for Charlie's parents and family. I believe the nurses and doctors who took care of Charlie day in and day out are just as deserving of prayers and sympathy, I have no doubt some of them went home and cried from the threats, questioning of their integrity, stress and frustration. That they didn't feel the loss deeply too, I imagine they do. It was tough all around. 

[nastyhobbitses]

48 minutes ago, Shadoewolf said:

One thing that still sticks out to me now that I've had time to think about it is there are still outlets and people trashing GOSH and everyone is about prayers for Charlie's parents and family. I believe the nurses and doctors who took care of Charlie day in and day out are just as deserving of prayers and sympathy, I have no doubt some of them went home and cried from the threats, questioning of their integrity, stress and frustration. That they didn't feel the loss deeply too, I imagine they do. It was tough all around. 

No, doctors are meanie bad evil people who didn't magically cure Charlie's incurable neurodegenerative condition and make him a normal perfect child! And they had the audacity to say that he was going to die and further interventions would do him more harm than good!

Honestly, I blame movies like Miracles From Heaven and other "I'm a MOM/free spirit/whatever so I know better than those meanie stuffy doctors" movies for enabling bullshit, anti-science, anti-medicine narratives that lead to crap like this. Yes, sometimes doctors can be wrong. Or overly pessimistic. Or have blind spots. They're fallible humans. They fuck up. But they also went to school for 10 years to be able to help people and save lives. They work their asses off to help thousands of kids like Charlie, who may or may not have a sliver of hope. And then these opportunistic anti-science WHARRGARBLers decide that they're on a crusade and being pissed off gives their argument more weight than the facts coming from neurologists and pediatricians.

I have some sympathy for Charlie's parents, but they also enabled this circus. They dragged this out. I put the blame more squarely on the political opportunists who seized upon a hard-up family as their mascot, but pretty much every adult in Charlie's life who wasn't the medical team directly caring for him seemed to care more about making a point than about Charlie's comfort.

[Gobbles]

10 hours ago, sawasdee said:

Does that mean that in Germany, the parents' rights overrule the welfare of the child?

In Charlie's case I think yes. I guess in Germany Charlie (if we imagine that he needs the ventilator and has seizures) would have been at home cared for 24h a day by a professional service. (Or less, depends on how much care he need, parents can do a lot of things by themselves and only need care during the night for example.) I also don't get why the hospice couldn't care for him longer. I think that is different here as well. Many children (with diseases that limit the life expectancy) go to a hospice for a few weeks to give their parents some time alone. A children's hospice is not only a place to die. I don't think a ventilator would be a problem.

For other cases no. If your child needs a blood transfusion and you are against it and your child is harmed by your decision you will loose the right to care for your child's health. (Jehovas Witness for example.) So for short: If you have a child that is sick and you withhold a medically needed procedure, you are in trouble. At least up until a certain age where for example a young person with cancer can stop all treatments if s/he wants too. If I remember it right you have to go and talk to the ethic committee and they evaluate if the child understands the decision fully, ect.! (I'm talking about teenagers, not very young children.) 

But switching life support off in a child that is not brain dead (I think it is 100% sure that Charlies wasn't brain dead) is a decision that the parents need to decide on in my opinion. GOSH did not nothing wrong, the court did nothing wrong. They just acted like it is common in the UK if I believe the articles I read about it.

I can only provide you with the original German article. 

http://www.zeit.de/wissen/gesundheit/2017-06/charlie-gard-kind-krankenhaus-ethik-entscheidung

Huge disclaimer: I'm not a professional medical person. I'm not a lawyer. I'm not an ethic expert. I'm guessing based on newspaper articles I read and my limited medical knowledge. 

 

[Gemini]

49 minutes ago, Gobbles said:

I also don't get why the hospice couldn't care for him longer. I think that is different here as well. Many children (with diseases that limit the life expectancy) go to a hospice for a few weeks to give their parents some time alone. A children's hospice is not only a place to die. I don't think a ventilator would be a problem

I'm in no way a health professional so this is just an opinion based on my limited knowledge.

Charlie needed more care than what a hospice could provide. Without the intensive care team that was available to him at GOSH, he would be placed in a dangerous (and painful?) position had he have started having seizures or other medical issues there. I don't think his full medical treatment has been released, however I would expect it was more than just a ventilator.

The court ruled that Charlie had the right to die with dignity and compassion, without placing him in harm. Taking him away from the medical care that was deemed necessary could have jeopardised that, and I think that is why the time was so limited. 

10 hours ago, Shadoewolf said:

I believe the nurses and doctors who took care of Charlie day in and day out are just as deserving of prayers and sympathy

This!

I can't believe that anyone who cares for a child wouldn't be affected by both the hideous threats and the loss of that child. I would even add the judge to that list of sympathy. To have so much rage and hatred directed towards you (by people who have no real involvement in the case other than being a member of 'Charlie's army') because you made a decision based on what was best for a vulnerable child, is despicable. 

 

[laPapessaGiovanna]

Problem was @Gobbles that Charlie needed a lot more than a ventilator, a feeding tube and a couple hours of skilled nursing a day to be kept alive. The court clearly established that is wasn't possible to fit all the needed instrumentation in a home, not to mention the experienced ICU team to operate it. Italy has a NHS and trust me they send patients at home as much as possible because in many cases is the right and even the more economically convenient thing to do, in many other cases it isn't. A friend of mine took care of her father for 20 years in their home after an anaphylactic shock left him in permanent vegetative state. In his case it was possible and the NHS paid for everything.

The court also verified that even an hospice couldn't put up with the resources needed to make Charlie live for an extended period of time. Hospices are hospices in the UK as well as in Germany as in Italy, they offer palliative care to terminally ill people, they don't offer the same services as an ICU. I think that what escapes many of those who comment about Charlie's sad story is the seriousness and the precariousness of his condition. Also his specific genetic mutation that caused his mitochondrial disease is extremely rare (I read somewhere there are only 16 documented cases, included his own) so when people write that someone "just like Charlie" was treated in a different way/is still alive in their teens/is cared for at home, well my answer is uhm no.

[jozina]

Yeah he needed a lot more care than someone who can be sent home on a ventilator with anti-seizure medication. Like I said above people generally don't have a great understanding of exactly what ICU or life support consists of which is fine (just like I have no idea about the detailed engineering when I fly on a plane), but it's so much more complicated than just a ventilator with a kid like that. I'd guess the hospital started the withdrawing care/hospice discussion months ago so while it seems very quick it's probably only quick from the point of that final decision rather than the medical reality of the poor child. He was well past the point at which children (or adults) usually move into hospice.

From Googling I don't think Germany does have rules drastically different to the UK in that regard, as far as limiting parent's right to consent where it is harmful to the child. The translation of that article isn't convincing me either. You almost always rely on what the parents say in the UK or countries with similar laws too. It's not like these sort of things go to court very often, let alone go to court with the protracted legal process that went on here or the media circus around it. In the UK or similar countries doctors treat children so long as there is a slight chance of improvement. That article didn't seem to grasp how incredibly rare, profound or complex the sort of problem Charlie had was, nor just how futile treatment was after so much damage had been done.

[imokit]

The hospice plan was that they had physical space for him and were a new environment allowing the parents to escape from GOSH (which by now they must hate).

Charlie needed full ITU support.  And to transfer him, he would have had a transfer team (at least 1 ITU doctor & nurse & paramedic - possibly more).  The plan was for them to stay with Charlie (and the equipment) for a few hours, but they'd have to leave at some point and at that point Charlie would be disconnected and would pass within mins.

The parents didn't want as they wanted more time.

The problem is that in order to provide intensive care, you need an intensive care team and intensive care.  The nature of Charlie's condition meant he was fully reliant on a special ventilator, take it away and he'd stop breathing.  Hospice's aren't intensive care, hospital wards aren't intensive care.

Home couldn't fit the vent, but neither home or hospice were going to provide the care to keep Charlie alive for days.

[Palimpsest]

5 hours ago, laPapessaGiovanna said:

Hospices are hospices in the UK as well as in Germany as in Italy, they offer palliative care to terminally ill people, they don't offer the same services as an ICU. I think that what escapes many of those who comment about Charlie's sad story is the seriousness and the precariousness of his condition. Also his specific genetic mutation that caused his mitochondrial disease is extremely rare (I read somewhere there are only 16 documented cases, included his own) so when people write that someone "just like Charlie" was treated in a different way/is still alive in their teens/is cared for at home, well my answer is uhm no.

This!

4 hours ago, jozina said:

I'd guess the hospital started the withdrawing care/hospice discussion months ago so while it seems very quick it's probably only quick from the point of that final decision rather than the medical reality of the poor child. He was well past the point at which children (or adults) usually move into hospice.

This!

2 hours ago, imokit said:

The problem is that in order to provide intensive care, you need an intensive care team and intensive care.  The nature of Charlie's condition meant he was fully reliant on a special ventilator, take it away and he'd stop breathing.  Hospice's aren't intensive care, hospital wards aren't intensive care.

And this!

There really is a time and place for hospice care for the terminally ill.  Charlie was terminally ill with no chance of improvement.  None!  

Hospice care is palliative care only and rejects extraordinary measures.  It also focuses on intensive support and counselling (psychological and spiritual) for both patient and family to ease the transition to inevitable death.  It is a choice I wish more people would make for themselves or family members when the outlook is truly hopeless.

It is a real pity that the parents were given false hope, were still in denial, and Charlie was not moved to Hospice care earlier.  IMO.

[unsafetydancer]

1 hour ago, Palimpsest said:

Hospice care is palliative care only and rejects extraordinary measures.  It also focuses on intensive support and counselling (psychological and spiritual) for both patient and family to ease the transition to inevitable death.  It is a choice I wish more people would make for themselves or family members when the outlook is truly hopeless.

 

Having worked on the fundraising team for a hospice for a bit I fully agree with the bit I bolded. The sort of support hospices can provide to the family who will be left behind is invaluable. I hope that Charlie's parents were given some of that wonderful support during their brief time in the hospice and that it will help them come to terms with his death.