Charlie Gard Case 4

[LovelyBath77]

A new thread to follow on from the others about this case

This gem has just popped on to the CA page, about why the drug's not been tested on mice - I just wish that in all these month somebody somewhere would have tested on a mouse then they really would have had no argument. But is it even that easy to find even a mouse with RRM2B 😕

ffs i mean really?

i would go on there but id prob be banned in record time

It says in one or other paper today that the parents feel 'stitched up' and 'rushed' because of today's 2pm deadline for submitting the new written evidence that they've been talking about.

but thy were the ones who said the had it!

NEW THREAD HERE - www.mumsnet.com/Talk/am_i_being_unreasonable/2977509-Charlie-Gard-Case-5

Of course they feel stitched up. They have been. GOSH have called their bluff good and proper. Tactically speaking, it's genius. I wonder what will happen if the parents legal team are no longer able to represent- I raised the issue of having to stop due to being professionally embarrassed on the last thread.

I just hope to god that this circus gets ended today.

goodbyestranger, they have had a longtime to submit evidence, they should have had it ready for Monday not today.

Yes absolutely right muckypup.

Knew my dd was getting a bit old for peppa ( never too old imo as I'm 39 and bloody love it ) when she said that Miss rabbit has the same voice as Nanny Plum from Ben and Holly

Dear god wrong thread I do apologise

I have a question about ethcs and the implications here.

The medics have decide that their patient should be allowed to die, against the wishes of those who represent him (as he can't speak for himself) as they have no cure, and treatments will not, in their opinion, eimprove his quality of life or length of life sufficiently to justify the administration thereof.

The Courts tend to agree, and feel it is better to let CG die.

However, when it comes to adults with terminal conditions, making their lives a misery/waking hell etc, the whole attitude seems to be a bit different. Why?

No the law is no different. It applies equally. The adults you are thinking of are able to breathe for themselves and are not on advanced life support as Charlie is.
That's not to say that their condition would not render them in the same situation but they can stipulate they don't want advanced life support in the from of an advanced care plan.

For Charlie and other itu patients who are unable to breathe for themselves and who have no prospect or recovery of independent breathing therr is then the discussion about withdrawing advanced life support as the treatment is futile sadly. Usually it doesn't get to courts.

It is slightly different. If the child is under an age where they are deemed to have capacity to consent, the parents or other responsible party who has parental responsibility (e.g. the Local Authority, If the child is in care) can consent on their behalf. If they disagree with the doctors, or one parent disagrees with the other, they can go to court.

With adults, no adult can consent on behalf of another adult. Doctors may consult family to inform and seek their assent (agreement), but ultimately the decision rests with the medical team and they do not require consent of family members to act in what they believe is the best wishes of the patient.

Lougle I think within the MCA 2005 there is provision for another adult to consent on behalf of someone over 16. It may be the parent as representative or next of kin but definitely an adult can lack capacity to make a decision.

However, when it comes to adults with terminal conditions, making their lives a misery/waking hell etc, the whole attitude seems to be a bit different. Why?

You are confusing removing active treatment with euthanasia.
GOSH are arguing for removal of active treatment, and not euthanasia.
For a lot of people, you can keep living after active treatment is stopped, some can't, like Charlie

Same for adults.

Thanks, Florriesma, Noeuf and lougle. I'll stop hi jacking now

Noeuf I think (and my knowledge stems from having a sectioned Mother and some professional knowledge) that whilst you can lack capacity, the limit of 'consent' from another relative for an adult is 'assent' (agreeing it is in their best interests). If an adult has Lasting Power of Attorney, or Deputyship, that is another matter, but otherwise if, say, an operation needed to happen and the patient lacked capacity, the surgeon would complete a 'Consent form 4' which is declaring that the patient lacks capacity but the operation is necessary and in their best interests. If a patient lacks capacity and is being detained at hospital, then a Deprivation of liberty (Safeguards) application is made. If a patient has a mental health condition and lacks capacity or requires treatment against their consent, they are assessed for a Mental Health Act Section order. In all of those situations, it is the medical team who decide on the treatment.

I've posted this before but here goes again:
in my personal and professional experience and opinions decisions about stopping active treatment or not to resuscitate are/should always lie with the medical team. NO relative should be asked to 'switch life support off' - I know that is how it is often perceived and remembered which is just awful, but the decision is on the treating doctors.
Of course the reasons for this must be communicated and communicated well to the loved ones (or PoA) and it is vastly preferable to have them on board and supporting the decision, but a doctor ought to 'first do no harm' and act in the best interests of the patient, not their loved ones (or legal representative).

Capacity is task specific, so people with, say, dementia can have capacity for choosing what top to wear today, but not for their finances, for instance.
CG has his own legal representative because of these complex situations and because parents are not able to make the best possible decisions for their children (again, I've said this before, I've been rubbish making health related decisions for my own children) when they are under the kind of horrible strain Charlies parents must be. And have been for months and months and months.

It is horrific. I think of them all several times a day but I am wishing Charlie peace and rest.

Hey @lougle I think we are thinking along the same lines but let's imagine my adult disabled son lacks capacity to consent to an operation. If I disagree but the medics want to, I believe the Court of Protection may be asked to make a decision? (Or the courts?) I don't think the doctors could just go ahead.

I agree that consenting to a suggestion from the doctors would be more straight forward.

Those FB women are like the Claques in France - people who were hired to clap, or boo,mor throw peanuts etc in the opera/theatre etc. Or hire mourners in ancient Rome.

Someone somewhere runs an organisation which does Internet Claque-ing.

Those 'idiots' of Charlie's Army are just students on zero-hours contracts, working at home on their own computers/phones, with a load of given identities and a list of things they're supposed to post on whichever site.

The half dozen people who turned up to each demo are the only real ones.

Everyone has been taken.

What a waste.

Hi @noeuf, it would depend whether the treatment was emergency (life-saving) treatment, in which case they would just get on and do it if they had assessed it to be in the patient's best interests (in the absence of a valid advance directive). Otherwise, yes, it's likely that if a consensus couldn't be reached then the Court of Protection would be involved. Which has been seen recently when the wife of a soldier felt that withdrawal of treatment was in his best interests but doctors didn't - she won, so they had to comply with what she felt was the right thing for him (choosing words carefully, because she wouldn't have chosen any of it, I'm sure, so it really isn't a 'choice', but rather a decision).

Charlie is on a ventilator he can't see or hear. His muscles are wasting away so eventually there will be no movement at all, his brain is severely and irrevocably damaged, fluid has to be removed from his lungs as he cannot cough. He cannot move his arms or legs. He is on morphine. The US treatment is not apparently going to improve his quality of life. What is Charlie missing out on? What quality of life is this?

So I've just had a quick scroll- I agree that this needs to end sooner rather then later. However I do feel for the parents, they want so badly to believe he'll be ok that they've become delusional. They've also had the likes of trump and the pope jumping on the bandwagon when really it's to distract from the negative press surrounding them both.