Charlie Gard

bianchimoon

Beyond tragedy for all involved, but non more so than the baby.... seeing protesters with placards saying 'save charlie gard' leaves me so sad, do these people not read/think. sometimes doing the right thing is the hardest thing of all

Pross

Far too many people have had their say with no knowledge of the medical facts. It's a horrible situation for the parents but people giving them potentially false hope is cruel.

slowbike

It's so difficult - the parents will naturally not want to end the fight and I can understand that - losing my little one would be totally devistating.
I can understand the (UK) doctors saying no more - keeping him alive is just prolonging the inevitable and as upsetting as it may be, they believe that is the best outcome for the baby - and that's the most important bit.

However, I can also understand the US doctors suggesting there may be hope - they don't know (no doctor will promise) - but with cases like this so rare, is it worth giving it a go?

I can't answer the last question - the Parents, understandably - will want to give it a go - any chance > 0% is a chance.
But is it in the babies best interest? Will he suffer? Will he feel pain? Will those around him be able to see if he is in pain?

I'm glad I don't have to answer any of those questions and I certainly wouldn't attempt to sway those that can answer those questions eitherway - my only plea would be that whatever they decide - it is the best possible solution for Charlie.

Pross

I don't know how anyone can work in medical ethics. At the same time Charlie's parents were fighting for him to be treated someone else was fighting for the right to assisted dying. I'd hate to have to make those decisions as I see both sides.

mamba80

Yet if this were a 50yo with MND or another similar terminal disease and obv zero chance of any recovery, an attempt at ending his/her life could lead to criminal prosecution, despite it being the patients heart felt wishes and having seen what MND does and the pain and suffering it causes, in their best interests too.

But its ok to end a childs life on the grounds they might suffer ie in the same way as the decision to put down a pet.

rjsterry

mamba80 wrote:

Yet if this were a 50yo with MND or another similar terminal disease and obv zero chance of any recovery, an attempt at ending his/her life could lead to criminal prosecution, despite it being the patients heart felt wishes and having seen what MND does and the pain and suffering it causes, in their best interests too.

But its ok to end a childs life on the grounds they might suffer ie in the same way as the decision to put down a pet.

Nobody is suggesting euthanasia in relation to this case. That is a different subject.

motogull

Its an incredibly sensitive situation. We actually have a superb legal system covering this. Every party is represented, even Charlie who has lawyers appointed separately from his parents.

I'm not entirely sure what the American doctor hopes to achieve. The benefits of his proposed treatment might be only modest. In those circumstances I can understand the doctors at our most respected children's hospital taking their stance.

The right to close your own account is a different matter. You could say that someone with MND is being discriminated against on account of disability because they would probably take a stroll across a landmark near Eastbourne if they could so why should they be prevented from making that ultimate call

crispybug2

Motogull

I'm very very suspicious of the American doctors motives, but I can't help but think that the million pound fighting fund raised for Charlie Gard has a lot to do with it

But whichever you look at it there are three people who are being pulled every which way in this and that's Charlie and his parents, I certainly wouldn't criticise them as not one of us could ever know how we would react unless we were in exactly the same situation!!

mamba80

rjsterry wrote:

mamba80 wrote:

Yet if this were a 50yo with MND or another similar terminal disease and obv zero chance of any recovery, an attempt at ending his/her life could lead to criminal prosecution, despite it being the patients heart felt wishes and having seen what MND does and the pain and suffering it causes, in their best interests too.

But its ok to end a childs life on the grounds they might suffer ie in the same way as the decision to put down a pet.

Nobody is suggesting euthanasia in relation to this case. That is a different subject.

i didnt say or imply it was, i just find it odd that we cling to the rights of this child and one of the reasons NOT to pursue further treatment is it may cause further pain etc.

its very sad for the parents but lets have a sense of proportion? all around the world babies die terrible deaths and no one gives a fcuk, few shed a tear for these 100's of poor children, they dont get a thread on BR, these were otherwise healthy kids who have had their potential snuffed out, in a game played between the US and the Russians.

At least 652 children were killed last year, up by 20 percent from 2015, the agency said.

http://www.reuters.com/article/us-midea ... SKBN16K1UL

joncomelately

crispybug2 wrote:

I'm very very suspicious of the American doctors motives, but I can't help but think that the million pound fighting fund raised for Charlie Gard has a lot to do with it

I'd be surprised if Dr Hirano was interested in risking his reputation on an international stage for the money; neurologists in the US can make a killing just with headaches, so I suspect he genuinely believes he can offer something to the case. And fair enough, he is an international expert on the disease (or as close as you get with something so rare).

Bear in mind the ethos in the States is very different to the UK, for various reasons - they are usually much more willing to 'do something' than our clinicians. Not that either way is 'right' or 'wrong', it's just a reflection of the local community's take on 'the best thing'. In a case like this, 'the best thing' is extremely difficult to judge - hence the involvement of the courts.

From the sidelines, with limited information, I think it's hard to see anyone doing anything that isn't reasonable through the whole affair.

rjsterry

mamba80 wrote:

rjsterry wrote:

mamba80 wrote:

Yet if this were a 50yo with MND or another similar terminal disease and obv zero chance of any recovery, an attempt at ending his/her life could lead to criminal prosecution, despite it being the patients heart felt wishes and having seen what MND does and the pain and suffering it causes, in their best interests too.

But its ok to end a childs life on the grounds they might suffer ie in the same way as the decision to put down a pet.

Nobody is suggesting euthanasia in relation to this case. That is a different subject.

i didnt say or imply it was, i just find it odd that we cling to the rights of this child and one of the reasons NOT to pursue further treatment is it may cause further pain etc.

its very sad for the parents but lets have a sense of proportion? all around the world babies die terrible deaths and no one gives a fcuk, few shed a tear for these 100's of poor children, they dont get a thread on BR, these were otherwise healthy kids who have had their potential snuffed out, in a game played between the US and the Russians.

At least 652 children were killed last year, up by 20 percent from 2015, the agency said.

http://www.reuters.com/article/us-midea ... SKBN16K1UL

You wrote "But its ok to end a childs life on the grounds they might suffer ie in the same way as the decision to put down a pet." That is pretty directly referencing euthanasia, no?

Not that that is what GOSH are remotely suggesting anyway. I agree that the morbid fascination with this case is disturbing, particularly the 'pro-life' rentamob who have been sending death threats to GOSH staff and harassing parents of other patients.

joncomelately

rjsterry wrote:

...particularly the 'pro-life' rentamob who have been sending death threats to GOSH staff and harassing parents of other patients.

Yeah, I retract my 'not seeing anyone doing anything unreasonable'. The rentamob are despicable.

tangled_metal

I've stopped reading this case in the news media because I find it distressing. I will make a few points I seem to recall reading about this case then follow up with a reply to some comments here.

First off (and correct me if I'm wrong) the patient's situation is serious brain damage that is not able to recover with current medical knowledge. His condition will only get worse. I believe he's got other symptoms like fitting such that he's unlikely to survive long without the interventions currently being maintained. His brain/head is not growing or by a very small rate. This hail mary treatment will never improve his condition no matter how successful. Even the doctor offering it agrees with that. It has a very slim chance of slowing the condition, by how much well nobody knows. It's a highly intrusive treatment for at best a slowing of the poor child's condition. It will result in the loss of his life. He suffers. This I think is what I've read about his condition before I stopped reading about it. I know in my mind what my choice would be if my child was in his predicament. I'll not say it here though.

Mambo makes a lot of good points on a wide range of topics but I find some of his comments difficult. MND in an adult with the ability to communicate wishes has no relation to this case as far as I can see. If it has please make your point and reasoning clearer, I don't follow it. Then to follow it up with what I assume to be a reference to Syria is oblique. Interest in one tragic case of medical ethics / law in the UK doesn't mean lack of interest in other events around the world. Discussion of this case is still if interest to some we've discussed Syria as well.

My worry is motives too. What do the parents want and does it benefit their child? The US doctor, what are his motives in offering a treatment that doesn't make his patient's condition better or even stops it getting worse only slowing it down? That's a big if it has an effect at all. He's no more an expert than any other specialist who's read up on the condition. Is he tainted by pro-life/religious sentimentalities? Where has the money come from? Religious pro-lifers or ordinary members of the public. Do they understand the case?

GOSH have doctors if the highest professional standards. If anyone is able to read up on the condition they are. I trust their opinions more than doctors from any other country. I know their reputation and that of the.hospital. I know they are at the forefront of childhood medical treatment (at the tertiary level). I've been to a tertiary, children's hospital before and they're at a different level.to your local general hospital.

The UK medical/legal process is very robust. It's more robust than criminal law I reckon. It's ruled in line with the GOSH medical view more than once. GOSH IIRC went to court to get the legal right to supersede the parent's rights to decide on their child's treatment. That is to be able to stop medical treatment when they feel the time is right. They got that and could have preceded but they chose to place the evidence of the US doctor in front of the courts even though it was not actually new evidence. BTW is it correct that the US doctor has not seen the child or seen all the medical records? The GOSH team went to court again probably to protect themselves from accusations of not having every slim chance or piece if medical guesswork reviewed in court.

Two final questions I'd like answered is who benefits from this legal battle? What benefits do they gain if they win? IMHO nobody wins. Perhaps the parents put off their final grieving process? Perhaps the US doctor gets publicity and more patients of the back of it. I doubt it'll benefit or harm GOSH. At the centre of this is a child suffering without hope of a cure and probably only worsening of his condition even with all the treatment he could have.

One obvious truth...It's a sad case.

FishFish

As the op says it is a tragedy for those concerned but actually - does not bother me - other people in a bad state and so on and I don't ask for any sympathy when I get in one either. But the funding does bother me. We are now within the NHS funding way beyond what it was set up for and the doctors just moan about free at the point of use - meaning increased scope - sex changes, bald men, increasingly complex stuff to add 10% to life. And all paid for by the taxpayer. Extra money for the NHS goes right in to the doctors pockets and the daily mail bemoans that they retire early due to overwork. I'd retire early if I had their salary too.

motogull

If those death threat stories are true, whoever is responsible is scum.

Fishfish, the salary and pensions were good to encourage people to become doctors. The training is extensive and long. The retirement terms have changed lately I think.

Tangled Metal, the judge will make a decision on what he thinks is best for the child. As I understand it, the local doctors are reluctant to allow the baby to leave because they do not think he will survive the journey.

pinno

I hate to say this but even as a parent, Charlie's parents are being selfish in not allowing the baby to die naturally. There is no outcome of any quality of life for the child even if Charlie gets the treatment in the US.
If the child is so brain dead, then surely the journey is not going to affect him. So let him go to the US. When it all goes pear shaped and there is no tangible outcome, the decisions of the Doctors and the Courts in the UK will be vindicated. Unfortunately, the legal process and the Doctor's decision in the UK is being compromised by public pressure and hospital staff have even received death threats and a torrent of abuse. This means the due process of making decisions based on medial fact are no longer considered on medical facts alone. Or is it? Are the doctor's holding firm in their professional opinion against public opinion driven by emotion and the faint hope of any possible improvements being totally exaggerated?

Charlie is being kept alive by machinery. That's the bare and stark reality.

joncomelately

FishFish wrote:

We are now within the NHS funding way beyond what it was set up for and the doctors just moan about free at the point of use

Have you evidence for this? All of the comments regarding free at the point of use coming from NHS staff have either been that they want to keep it, or that the funding doesn't cover the amount of work done to keep it free at the point of care. I've never heard a doctor moan about it as a concept.

FishFish wrote:

Extra money for the NHS goes right in to the doctors pockets and the daily mail bemoans that they retire early due to overwork.

This is completely wrong. Have you watched or read any of the information about this? It has been all over the news about the public sector pay cap at 1%, which means that all NHS salaries - doctors, nurses, physios, cleaners etc etc - are in real terms becoming less and less. On top of that, the salary structure in the NHS is pretty fixed and the only way you can increase your salary is by becoming more qualified, or doing more or (perceived) harder work. So there is no way increased NHS funding will end up 'in the doctors pockets' (sic) as all the existing doctors have set salaries, or will work more for an increase. If you mean that the extra funding would theoretically enable expanding the workforce, and therefore a proportion of it will end up in the pockets of doctors who were not previously employed by the NHS, then yes - but there would also be more nurses, physios, cleaners etc etc.

In reality, that won't be the case as staff retention (which was previously excellent) is falling due to the worsening working conditions, and the available pool of candidates will not cover the expected expansion. This is the end result of underfunding of the NHS for decades, and there is nowhere else to go now. The amount of money required to update the whole system is so astronomical the government cannot or will not afford it. There is no more room for efficiency, so we are facing the reality of rationing care (which is happening) or moving away from the NHS model.

Having had some involvement in the junior doctor strikes, I can see that the only people working to try to maintain a free-at-the-point-of-use NHS are the NHS frontline staff - including doctors, nurses, physios, cleaners, etc etc. The governance tier - chief execs, senior managers, etc etc, don't seem to give a t*ss about patients.

sungod

Joncomelately wrote:

...The amount of money required to update the whole system is so astronomical the government cannot or will not afford it. There is no more room for efficiency, so we are facing the reality of rationing care (which is happening) or moving away from the NHS model.
...

drifting off topic, but what the hell...

there's one clear efficiency, kill the pfi swindle

nhs pfi cost is now over 2 billion/year and will continue rising for many years, earning the backers' many times the amount invested in spite of the long term low interest rate environment and the essentially zero-risk nature of pfi investment, the impact across the public sector as a whole is much greater

i'm all for making money, but pfi is an appalling swindle of every tax payer, yet governments, both tory and labour, are happy to let it continue, no doubt they will continue to be amply rewarded

joncomelately

sungod wrote:

there's one clear efficiency, kill the pfi swindle

Fair enough, I hadn't considered that. Was meaning to say (not very clearly) the staff and facilities can't be stretched any further on the same/reducing money, but point taken.

FishFish

Joncomelately wrote:

FishFish wrote:

I can see that the only people working to try to maintain a free-at-the-point-of-use NHS are the NHS frontline staff.

This is my point. They want no restrictions in what they can spend taxpayer money on. This is totally unrealistic and unfair on taxpayers. And lets not forget that even poorly paid nurses come fourth in graduate salaries five years down the line.

The medical profession are a law unto themselves and the greediest parasites in the country. FACT.

joncomelately

FishFish wrote:

Joncomelately wrote:

FishFish wrote:

I can see that the only people working to try to maintain a free-at-the-point-of-use NHS are the NHS frontline staff.

This is my point. They want no restrictions in what they can spend taxpayer money on. This is totally unrealistic and unfair on taxpayers. And lets not forget that even poorly paid nurses come fourth in graduate salaries five years down the line.

The medical profession are a law unto themselves and the greediest parasites in the country. FACT.

You make your point in an odd way, because it sounds like you're attacking the NHS staff for trying to keep a failing system working for the benefit of the country with personal sacrifices.

It also sounds like you're an idiot when you say the medical profession are a law unto themselves and parasites, given that there have been several high profile events recently where the medical profession have not been able to do what they feel is right, and in any other country they would enjoy a comparatively far higher salary.

There's a reason that frontline health care is described as a vocation in this country, as the majority of the staff want to do it for the job itself, not for prestige or glamour. However, I suspect your views are too entrenched for you to think about whether they're accurate or not so perhaps we should leave it there.

Ben6899

FishFish wrote:

This is my point. They want no restrictions in what they can spend taxpayer money on. This is totally unrealistic and unfair on taxpayers. And lets not forget that even poorly paid nurses come fourth in graduate salaries five years down the line.

The medical profession are a law unto themselves and the greediest parasites in the country. FACT.

Oh you wrote it in CAPITAL LETTERS. So it must be genuinely a fact.

crispybug2

Charlie's parents have withdrawn their application to take him to America and he will have artificial help to keep him alive withdrawn and be given palliative care

Armed with the very limited knowledge from the court papers that are available to me, this does seem to be the best outcome for Charlie as there seemed to be little or no quality of life!

ballysmate

Am I right in thinking that the US doctor, who held out so much hope to the parents, never examined Charlie nor even studied the scans?
If so, shameful!

orraloon

From BBC News website:

"Their lawyer Grant Armstrong said the parents' worst fears had been confirmed.

He told judge Mr Justice Francis US neurologist Dr Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week."

ballysmate

orraloon wrote:

From BBC News website:

"Their lawyer Grant Armstrong said the parents' worst fears had been confirmed.

He told judge Mr Justice Francis US neurologist Dr Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week."

Yes, just read that the judge asked Hirano to fly over and examine Charlie for the first time and he subsequently stated that treatment wasn't a viable option.

https://www.theguardian.com/uk-news/201 ... y-ill-baby

crispybug2

Ballysmate wrote:

Am I right in thinking that the US doctor, who held out so much hope to the parents, never examined Charlie nor even studied the scans?
If so, shameful!

I might be incorrect, there is so much white noise surrounding this case, but I read that GOSH invited Dr Hirano over several months ago to examine Charlie but he either didn't show up or he declined.

bianchimoon

Even the treatment he wanted to try was so experimental it hasn't even been used on mice. I fear the poor boy was becoming a pro-life football, the 'save charlie' crowds outside GOSH after the father spoke were disgraceful, with their non-stop chanting 'justice for charlie'... who's agendas are they chasing?

sungod

bianchimoon wrote:

Even the treatment he wanted to try was so experimental it hasn't even been used on mice. I fear the poor boy was becoming a pro-life football, the 'save charlie' crowds outside GOSH after the father spoke were disgraceful, with their non-stop chanting 'justice for charlie'... who's agendas are they chasing?

social media rent-a-mob, it wasn't about the kid, it was about belonging (or not) to 'the cause'

doesn't matter what the cause is, just takes enough people seeking validation through group reinforcement to get something going, after that logic and fact cease to matter

earthvspace4XTuUWcX

Fishfish said:

The medical profession are a law unto themselves and the greediest parasites in the country. FACT.

Where is your evidence for that, or have you been reading the Daily Mail again.

Fingerbobs

FishFish wrote:

Joncomelately wrote:

FishFish wrote:

I can see that the only people working to try to maintain a free-at-the-point-of-use NHS are the NHS frontline staff.

This is my point. They want no restrictions in what they can spend taxpayer money on. This is totally unrealistic and unfair on taxpayers. And lets not forget that even poorly paid nurses come fourth in graduate salaries five years down the line.

The medical profession are a law unto themselves and the greediest parasites in the country. FACT.

I fear that with a mentality like that, one day this country will get the health service it deserves, but it will be a far cry from the type of one it really wants and needs.

A privately based health care system will profit the insurance companies, and the physicians and surgeons whose skills will be paid for at market rate, which is considerably more than NHS rate. Yet those same NHS Doctors that would most likely profit financially from a private system are among the ones most vehemently against it. Not what you'd expect from who you have labelled "the greediest parasites in the country".

Sickness and death comes to us all. In countries like the USA, sickness, be it mild to moderate chronic disease or acute severe illness ( heart attack, appendicitis etc), comes with crippling financial cost to the individual.

The national tariff (what the UK government pay NHS hospitals) for a hip replacement is LESS than the VARIABILITY of the cost across of a hip replacement across the USofA! (American Academy of Orthopaedic Surgery conference 2017).

Believe the likes of the Daily Mail brigade if you want, but it will be your loss and my gain.

I will keep fighting for the free at the point of delivery NHS.

DOI Consultant Trauma and Orthopaedic Surgeon. And sorry for the capitals, not meaning to shout but I couldn't get emphasis with italics or bold. It is FACT though