Baby Charlie Gard case

[keano77]

I completely understand your unease jacks09 and I suspect most people would fight tooth and nail the protect their children.

A few points though:

The mother and father have already lost control of Charlie. He is only alive due to 24-hour medical care. The parents cannot take him home to look after him.

Secondly, I'm a bit uncomfortable with the phrase (innocently) used above 'Not a life worth living'. Who is to decide this? In some respects the medical condition and its effects suffered by Stephen Hawking could be described as a life not worth living yet he's certainly put me to shame

My third point is the notion of 'death' itself has changed in the way society views the concept. Due to medical advances death has become rarer. By this I mean, great grandparents and older grandparents remember losing brothers and sisters to 'colds'. People caught Spanish flu and died by the millions, people caught 'chills' and died. Death was a normal part of everyday life. Medicine has changed this for the moment although with the worrying resistance of bugs to last resort antibiotics we might find we go full circle on this. In short, the dilemma for Charlie's parents is because the medical teams are doing such a good job keeping him alive. This, in my opinion is making it so painful to let go and accept the inevitable.

[JohnL]

"Secondly, I'm a bit uncomfortable with the phrase (innocently) used above 'Not a life worth living'. Who is to decide this? In some respects the medical condition and its effects suffered by Stephen Hawking could be described as a life not worth living yet he's certainly put me to shame "

Well after my mother had a stroke my sisters swore they just said "we're turning it off now' not 'can we turn it off'.

Maybe she had a living will I didn't know about.

Hawking has an very abnormal slow progressing version of motor neurone disease - so he could plan what he wanted from a very young age - and as an intelligent man he did and will have for the future.

[keano77]

JohnL Wrote:

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> "Secondly, I'm a bit uncomfortable with the phrase

> (innocently) used above 'Not a life worth living'.

> Who is to decide this? In some respects the

> medical condition and its effects suffered by

> Stephen Hawking could be described as a life not

> worth living yet he's certainly put me to shame "

>

> Well after my mother had a stroke my sisters swore

> they just said "we're turning it off now' not 'can

> we turn it off'.

> Maybe she had a living will I didn't know about.

>

> Hawking has an very abnormal slow progressing

> version of motor neurone disease - so he could

> plan what he wanted from a very young age - and as

> an intelligent man he did and will have for the

> future.

Yes, I have read that sometimes medical teams can be a bit too cold and clinical when switching off life support. Maybe if you see death and hopeless cases on a daily basis you become a bit hard as we would view it.

I mentioned 'quality of life' above not least because it is being used a lot now especially in discussions on the right to end your own life, but of course that is a different discussion.

[TE44]

Saffron Wrote:

-------------------------------------------------------

> TE44 Wrote:

> --------------------------------------------------

> -----

> ....

> > This may seem off the

> > mark, but hospital births on there own, take

> the

> > choice away from parents if something is wrong.

>

> So wide of the mark in every respect as to

> completely miss it, I'd say.

Yeah in your life Saffron.

It was mentioned in another post, tho opposite

situation of parents withholding treatment. If something goes wrong at birth, not excluding why,

Most people would be glad and feel safe to be in hospital. I went against medical advice to have a home birth, and was often accused of being selfish considering the health problems I had. There was an assumption that life and death decisions were not to be trusted with the mother. Each person has reasons (personal) for there decisions but whenever

It becomes a decision outside of where most people

Would rather hand over.trust someone else to have overall responsibility the individual is secondary, to the law.

[rendelharris]

I would guess (and this is neither supporting nor criticising anyone concerned) that doctors have to be quite proactive in situations which will involve withdrawing life support: once they've determined that brain death has occurred, presumably "we've got to turn it off now" causes fewer problems than "we'd like to turn it off, however we can keep the patient breathing and keep their heart beating artificially and in one in fifty thousand cases there can be an inexplicable recovery"; grieving people will often leap at the smallest chance and you could end up with wards full of people being kept "alive" when they are in fact, to all intents and purposes, dead.

[Loz]

TE44 Wrote:

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> I went against medical advice to have a

> home birth, and was often accused of being selfish

> considering the health problems I had. There was

> an assumption that life and death decisions were

> not to be trusted with the mother. Each person has

> reasons (personal) for there decisions but whenever

> It becomes a decision outside of where most people

> Would rather hand over.trust someone else to have

> overall responsibility the individual is

> secondary, to the law.

And had things gone awry, I have no doubt you would have expected those same nasty, terrible medical people to step in and help you.

[Sue]

rendelharris Wrote:

-------------------------------------------------------

> I would guess (and this is neither supporting nor

> criticising anyone concerned) that doctors have to

> be quite proactive in situations which will

> involve withdrawing life support: once they've

> determined that brain death has occurred,

> presumably "we've got to turn it off now" causes

> fewer problems than "we'd like to turn it off,

> however we can keep the patient breathing and keep

> their heart beating artificially and in one in

> fifty thousand cases there can be an inexplicable

> recovery"; grieving people will often leap at the

> smallest chance and you could end up with wards

> full of people being kept "alive" when they are in

> fact, to all intents and purposes, dead.

Maybe it was the way they said it?

[TE44]

Yeah loz cause thats what i said about them.

I have supported people in hospital and can respect

peoples choices. Black and white.

[rendelharris]

Sue Wrote:

-------------------------------------------------------

> rendelharris Wrote:

> --------------------------------------------------

> -----

> > I would guess (and this is neither supporting

> nor

> > criticising anyone concerned) that doctors have

> to

> > be quite proactive in situations which will

> > involve withdrawing life support: once they've

> > determined that brain death has occurred,

> > presumably "we've got to turn it off now"

> causes

> > fewer problems than "we'd like to turn it off,

> > however we can keep the patient breathing and

> keep

> > their heart beating artificially and in one in

> > fifty thousand cases there can be an

> inexplicable

> > recovery"; grieving people will often leap at

> the

> > smallest chance and you could end up with wards

> > full of people being kept "alive" when they are

> in

> > fact, to all intents and purposes, dead.

>

>

> Maybe it was the way they said it?

I'm sure, I wasn't wanting to comment on anyone's specific case, and obviously not all doctors behave in the ideal manner towards the bereaved at all times.

[Blah Blah]

What we have to remember here is that Charlie's condition means that he will die, whether life support is removed or not. The experimental treatment being offered with the 10% 'improvement' refers to improvement in muscle response. It does not offer any solution to the underlying cause or progression of the muscle waste. It does nothing for the lack of brain growth and development. We give doctors the say we do because they are doctors, with expert knowledge that parents just don't have. The hypocratic oath requires doctors to hold the patients best interests above all else. That also means means sparing from prolonged suffering, protecting from futile intervention (sought out of desperation or otherwise), and allowing death to occur as gently as possible. And we have to remember that court action did not come about because of the latest offer of treatment abroad. It came because the parents always struggled to accept the prognosis that their son has an untreatable and degenerative condition. In this case, the parents do not have a better understanding of their child's condition than doctors, and therefore can never be the ones to make the final decision. That may sound harsh, but it is the child and his suffering that matters here.

I think the comment made by someone above, that we now expect everything to be preventable, treatable and curable is right. We know that we all die one day, and hopefully some of us get to lead very long and healthy lives before that happens. But we seem to be not very good sometimes at facing death in others, especially those we are close to. That is a normal human response. Nothing is easy about this case for both doctors and parents alike.

[JoeLeg]

What Blah Blah said, 100%.

[JohnL]

Looks like the parents have ended there fight.

[DaveR]

There are a few comments on this thread about how/why courts can overrule the wishes of parents. The court have the power to make decisions in the best interests of children in a variety of circumstances - perhaps most often when parents can't agree but also where there is an argument that parental wishes are not in the best interests - the most obvious being the type of example cited above, where life saving treatment is rejected for religious or other reasons. Doctors who treat terminally ill children will obviously be familiar with both the medical and legal processes, but I find it difficult to believe that these sorts of cases are ever brought without a lot of careful thought and with a great deal of reluctance. And once you've started it's obviously not appropriate to change your mind just because the case ends up in the papers or becomes very drawn out.

[Jules-and-Boo]

I wouldn't wish this situation on anybody.

I'm pretty annoyed the President and Pope stepped in. I don't think their motives are for the child's well being. It doesn't seem to be about the little boy anymore. Just some kind of power game.

Agree with BlahBlah fully.

[Loz]

Now that the legal fight is over, I hope that the parents are allowed to take him home for his last days. I recall they were told they can't a few weeks ago, but I hope someone can make it happen. It will help give them some sort of closure.

[DulwichFox]

Loz Wrote:

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> Now that the legal fight is over, I hope that the

> parents are allowed to take him home for his last

> days. I recall they were told they can't a few

> weeks ago, but I hope someone can make it happen.

> It will help give them some sort of closure.

I would of thought as soon as his life support is turned off, poor Baby Charlie Gard's life would slip away.

Very sad.

DulwichFox

[srisky]

jacks09 Wrote:

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> I am coming from quite an uninformed position

> here, and have been lucky enough to recently

> become a father to a healthy boy.

>

> What sits uncomfortably for me is that anyone

> apart from the parents can have the final say on

> issues relating to the child. It just doesn't sit

> right with me that a hospital/judge/state can

> determine a course of action that the parents

> don't agree with.

>

> Really interested to hear others thoughts on this.

As others have mentioned, parents wishes can be overruled when deemed not in the best interest of the child. Even doctors are strongly advised/deterred by the GMC from treating their relatives. When it comes to our own relatives, judgement is clouded, rational thinking is affected, the thought of losing our relative may be so unbearable we can not let them go and suffering is prolonged and worst of all, motives may be sinister.

Conversely, it is wholly unfair to put the burden of decision making on the family of the patient who may have little or no medical background. For example when a patient lacks capacity, relatives can not agree or disagree to 'do not resuscitate' orders - this is a medical decision based a multitude of factors. Good practice, however, is to engage the next of kin throughout the process (with the usual caveats of consent and confidentiality) and it is important close relatives/friends are consulted about the patient's possible wishes about their care (in the absence of an advance directive).

The medical team, although clearly not devoid of emotion, can balance the pros and cons of treatment and make informed, rational choices in the best interest of the patient. Sadly, in this case it conflicted with the parents' wishes.

I hope in time they find peace and both sides' faith in the process is eventually restored.

[Inbound]

If this poor little mite was mine, I think I would have let him pass away as his life chances and expectations were so low, and expected to give a lot of pain and suffering. I think this couple were a tad selfish and a stronger demonstration of love would have been to let him rest in peace

[Capitals]

They were not selfish.

I know of at least 2 cases where the medics were wrong. In each of them they told the parents to expect the worst and to stop the pregnancy, yet in each of this case, the child was later born healthy.

Parents of Charlie wanted for him what's best. Nobody knows what would be best, nor how he would have responded to the treatment. Nobody.

[Blah Blah]

That is not quite true Capitals. There is no treatment on the planet that can halt or cure his condition, none. The experimental treatment he was being offered, would only have impacted on muscle wasting, and only by a small percentage. The parents in their press statement claimed that had he been given this treatment months ago, that he could have led a normal and healthy life. They too are also wrong.

Of course they are not selfish. But they are misguided, and seem to have no understanding of the reality of the genetic disorder that Charlie is suffering from.

[TE44]

http://www.telegraph.co.uk/news/2017/07/24/charlie-gard-mothers-full-statement-sorry-couldnt-save/

There seems to be conflict regarding previous scans, the parents and it seems some doctors

believe up until latest scan there was no irreversible brain damage. The fact this couple have given up there fight after this recent scan

shows they have understanding of the whole situation which is much more than a diagnosis.

[edcam]

It would seem that this US "miracle worker" doctor was not what he seemed.

http://metro.co.uk/2017/07/24/us-doctor-who-wanted-to-treat-charlie-gard-had-financial-interest-says-great-ormond-street-6802891/

[Blah Blah]

TE44, the condition is degenerative in every case. In other words, the symptoms of the genetic disorder always result in muscle wasting and organ failure, always result in a shutting down of brain function. There was no long term prognosis of improvement, and the experimental treatment at best offered 10% for the muscles only. It offers nothing to address the genetic aspect of the illness, i.e the underlying cause. Your article is the parent's statement in which they reflect the conflicting views of their doctors and those of the hospital. It can not be a given that their view of their son's illness is a correct one. At no point do they ever, or have they ever mentioned the genetic aspect of his illness. The illness is called Infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). The word depletion is the critical thing here. The defect hinders the mitochondria, which drives the energy of cells to function, replicate etc. The brain had stopped growing before showing signs of irreversable damage, yes - but there is no known treatment for that. This claim they have that their child could have lived and happy and normal life is just fantasy. That tells me that they do not understand his condition at all.

As Edcam shows, these 'new' doctors, gave opinion without having seen any of the child's medical records. This is the problem. This case went to court four times (including the latest hearing). And on all four occasions, the court agreed with the hospital. If there had been any treatment out there that could have helped this child, he would have received it.

[TE44]

I thought conflict of interest was taken as the norm now or is our NHS free from that.

I think the QC for gosh should beunder scrutiny, although the results of the scan were

given just before the court case, who gave permission for access by the legal team before the parents were told.For the parents to hear in that way does not reflect well on respect shown to them.

[Blah Blah]

No the NHS is not free from that, which is why the case went to court four times and the NHS won the case every time. Why? Because infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) is degenerative and fatal in every case. There is no miracle treatment or cure for it.