Charlie Gard- State decides or parents?

rancidpunk

Not condemning or not condoning?

We made the choice not to have children, but I can still empathise with the parents. I couldn't imagine having to finally accept letting go.
Sadly, there's far more of these cases than ever makes media attention such as this. Flipside being that decisions can be made there without the accompanying media circus.

IronGiant

condemning, sorry.  I didn't see any humour, but if you did OK.

I empathise with the parents, but they need to let go. And that American "Doctor" should be struck off.

IMHO.

Unlucky Alf

I feel sorry for the parents, but they're not thinking rationally at all, and no one close to them seems to be telling them that they may need to reconsider what they're doing. All the family members I've seen talk about this are clearly singing from the same hymn book, and they've now had US right to life groups latch onto them.

Plus the FB barmy army continue to throw around insults and idiotic advice, and anyone who goes against the party line of blind support for the parents is rapidly kicked out.

paul1979

Personally I think the hospital are being obstructive. I had the whole bay window removed for a sofa and placed back in all in 2h. Now that was furniture not a kid.

They can get the machine in and the care needed can be hired- they have over 1m in funds to support that no one would object so that he makes his first b day.

This I feel is a mockery of justice. It's a final wish and can be achieved. The last they they can do and it's still objected.

I feel at times gosh seem full of there own self importance.

rancidpunk

I would hope you would know exactly what I meant, I was in no way making light of this tragic situation.

It's head and heart though. The closest I ever came to this was when my mum involved us in deciding whether to stop treating my dad. At 81, in constant pain and the treatment for one problem making other problems worse, it should have been an easy decision. Head said all the way to let go, heart fought us all the way though.

I can't begin to imagine how parents of a young child would even begin to think of letting go as a better option, no matter the science of it saying otherwise.

It's incredibly easy to be pragmatic, or worse, when discussing on a forum, completely detached from any emotional connection that the parents will live with forever.
I bet they'd love to forget this and get back to left/right squabbles, as this forum will.

Inotrope

It's all very sad, and most unfortunate that the media (main stream and social) seem to have spun these tragic events into a media circus and one wonders if this has egged the poor parents on (to their detriment).

I'm confused how commentators have conflated good medical ethics and judicial opinion with "the state" - courts exist to challenge laws and "the state". Good medical ethics are set by both the profession and law.

Essentially the principle of non-maleficence is applied - "do no harm". This poor child has a life-limiting condition with a woeful quality of life with no prospect of cure. Usually these situations are managed with agreement between medical teams and family; with the best wishes of the patient always at the heart of the decision making.

For whatever reason, in this unusual case that relationship has broken down, and there is disagreement between all parties (very unusual). The parental decisions to prolong life were felt to not be in the best interests of the patient, and it is correct to challenge this (we act in the primary interest of the patient, not family - but usually everyone works together for a shared goal which may be a dignified death - which is a "good outcome" in some tragic cases).

We do, on rare occasions have a reverse situation, where life-saving treatment is refused by a parent on behalf of a child (who is unable to consent for themselves (Gillick Competence)); again this must be challenged in the Court, the classic example being a child of Jehovah's Witness parents who refuse a life-saving blood transfusion).

The American chap rather antagonised matters, failed to examine Charlie until last week and had a pecuniary (financial) interest in the untested and unproved therapy (which he only quoted a "10%" chance of improvement. Of course this was based on animal studies, and improvement to what level of function was not defined. He should be investigated by his licensing authority, as a colleague would be investigated by the GMC in the UK.

With respect to end of life care, one does need to be reasonable as to what can be achieved at short notice*. To provide ongoing paediatric intensive care in the home is probably not practical (although some adult patients are on home ventilation). Essentially one needs the equipment of a Paediatric Intensive care bay, plus spares of everything (pumps, monitors, ventilators). Suitable Emergency and resuscitation equipment, Piped gases (or a store of oxygen and air cylinders or an oxygen concentrator). A UPS power supply (or generator) for a potential power failure. Of course there may be a need for medication, which if opiates (morphine etc) were needed would need to be stored and dispensed in line with the Controlled Drugs act. On top of that, 6 PICU nurses and three PICU doctors (probably Consultant level, as this is a "Remote site"); with detriment to the unit they should have been working on. Probably some health and safety stuff (an oxygen enriched environment is a fire hazard).
Wonderful if it can be done, but sets an unsustainable precedent.


Fundamentally, these events will make the grieving process so very hard for the poor parents; I hope they are well supported. This is not a time for anger.

For reference, GOSH have published legal summaries, which clearly demonstrate the compassion, care and professionalism with which this sad situation has been approached.

Cliff

Certainly GOSH has not come out of this at all well. How this went all the way up to the High courts and the European Court of Human Rights, is beyond belief. GOSH had no problem using state funds I suppose to win their case (a point of view), while the poor parents were not even given legal aid and but still fought hammer and tongs, for what they felt was right.
It  rather points to the fact that the system is wrong in the first place. A hammer to crack a nut.

I rather hope the authorities would look at ' how could this be handled better' than a back side covering operation like.......
Looking at the last chapter of this sad story, the professional have been repeating the mantra 'in Charlie's best interests, least suffering  etc etc' ad nauseam.  But, to but it bluntly, Charlie's life is ending. They should be looking at the parents needs with respect to the grieving process and conclusion.

The practicalities of a life support machine in a house setting might seem daunting, but if the wishes of the parents were that he dies in their house then, really, if only for a few days,it could have been done. I know its not very practical, but considering the cash and time that GOSH spent fighting this case,  all wasted on High Courts and lawyers, it would have been a chance for GOSH to redeem themselves and show they had a bit of compassion for the parents as well.

IronGiant

I know

Toko Black

Sorry Cliff, but you really do sound like you are reading a script from American alt-Right movement rather than representing anything the fits in with the normal UK left  right political spectrum.

The only thing I agree with you on is legal aid. It should be available to anyone without the means to support their case so that everyone can have their day in court.
I understand that there was an attempt to address the issue of frivilous cases being brought to court, especially with no win no fee lawyers which was costing the tax payer a significant amount of time and money.
The response was to throw the baby out with the bath water, a common approach by the government in which they severely restricted who and what types of case qualifies for legal aid.
I would suggest a much better option would be to allow all cases to have access to legal aid where fiscal restraint would otherwise inhibit it, but with a warning that if the case is reasonably suspected to be frivilous, it is sent to a panel of experts to assess if it has any merit and potential fines and costs may be applied/awarded.

But that is another discussion in it's own right.

I feel like this poor little boy and his parents have been used by those with fiscal and political motivations as a football primarily coming from the US.
First by the American doctor 'selling' false hopes, then by the political right in the US media and social networks as an example of the horrors of 'socialist healthcare' at a time when they are embattled against failure to repeal and replace ACA(Obama Care).
Add to that the large right to life movements which are primarily Republican and alt-right, and it's easy to see why those particular types of narrative have been pushed onto the networks.
That in turn is fueling those in the UK with connections or simpathes with the alt-right, US right wing because that tends to be the largest source of media, stories and narratives on the net.

It's unimaginable what those poor parents are and have gone through with all this ..... it would be devastating enough to be loosing your child, never mind with added drama and trauma that it has been turned into.
The net result of all this is that the alt-right have managed to score some points amongst their faithful while a little boy and his parents have suffered, the doctors, other patients and parents have been harassed and suffered - the alt right wins at least in their home turf and EVERYONE else has lost, none more so than Charlie and his mum and dad. My heart goes out to them.

Cliff

No. Got nothing to do with them and not read anything about them. Just my own opinion. Got nothing to do with left or right. Just a bit of common sense and the opinion the nanny state overreached itself. - with a huge backlash from normal people.
So you are happy with the way the case proceeded?