Issues raised by the CG case 11

[Venusflytwat]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
http://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

The statement from CY actually says very little.

It's says they are "satisfied" he is not suffering or in pain.

This could mean because of the morphine he is on, or because the latest tests have confirmed he is beyond feeling.

It's a very neutral press release that is contrary to many others.

I hope - whatever happened today that there is greater understanding between the clinicians and parents.

Until the Americain spokespeople return and manupnate they way in.

I guess what I'm really saying here is that the law having to step in isn't a failing, it's the final guarantee that we collectively as a society agree needs to be in place when best practise and goodwill and honest efforts from all concerned still cannot come to an agreement. The law has to speak for those who don't have a voice

Very well put, SomeDyke.

My mum pu a DNR on her medical notes, after discussions with her gp , and us. The night she died, the OOH doc came out and took me aside a) to say she was dying (I said "I know" and he said "I mean she's dying right now, it'llbe tonight"), and b) to tell me of her DNR (again "I know"). But he wanted to give her morphine as, for the first time, the cancer was causing her pain, and called an ambulance - I think that was to bring her the drug? or maybe so someone else could witness her state? I have no idea, in truth, not quite with it right then.

The paramedic took me aside to tell me the very same things the doctor had told me. The only people who didn't were the community nurses who came to put a shunt in, who didn't even say hello let alone anything else to us, threw mum about like she was a ragdoll and were the most horrible HCPs I'd ever met.

Yes that press release was almost certainly written by the barrister.

Oops - or solicitor!

I just hope Laura keeps quiet now and lets CYs statement hang in the air.

The results of the case will be reported, it'll be discussed for a long time yet, Connie and Chis hopefully now can slide away from the circus and get looked after by actual real life people.

The statement from CY actually says very little

I think it says very little in terms of medical info
But I think it covers all the bases re C&C
I think it says that they think that whatever the outcome, they think that having further tests/discussions was the right thing to do
I think it very clearly says that they do not believe that these further tests have caused him pain or distress
I think it thanks the US doctor (and the absense of mention for some other key players hangs in the air)

What else is there to say from their personal point of view
All that's left now is the court/medical announcements, which doesn't have to come from C&C as it'll be available to the public once it's in the transcripts.

But they've covered all the human interest aspects cleverly in the statement, so hopefully they won't now be hounded, and if they are, they have a nice "stock" answer to repeat, that says everything and nothing

I think I missed - why is there such a big gap between the Drs meeting (today) and court reconvening (next week)?

In my area, if an adult has a community DNACPR (the A is really important, by the way, it stands for Attempt, because many attempts at CPR will be unsuccessful), they have a pot in the fridge which the ambulance crew are told to look for. The purple form is folded up in that pot in the door of the fridge, and gets taken to hospital with the patient.

BeyondDrinks it's when they could get court time.

I think I missed - why is there such a big gap between the Drs meeting (today) and court reconvening (next week)

someone mentioned something about a longer duration EEG to pick up seizures. I guess it'ld be similar to the difference between a once off ECG of the heart, and having a 24hour ECG tape analysed?

IDK, her statement sounds to me as if she's expecting the judge to rule for treatment.

As far as the discussion regarding one's right to determine one's fate. I live in a 'right to die' state here in the US. It's really comforting to both DH and I to know that we have that option (in certain circumstances).

As far as DNR goes, one signs a 'living will' or 'advanced directive' a copy of which goes to one's health care providers. It's also asked for upon any hospital admission. As far as ambulance call outs, our local communities participate in the 'vial of life' program. There is a sticker you put on your doors for 1st responders to look for telling them you are a participant. You put a copy of your advanced directive into a specifically labelled vial and put it on the top shelf of your fridge door. Both my parents had 'vials of life'.

this is the thing about feeling pain

c an c insisted he doesnt feel it and im not diputing that-but they also say he can feel them when they tickle him-well how is that possible if he cant feel pain?

I think the delay in it getting back to court could include a number of factors:
Time for the judge to read all the reports and ask for any clarification.
Availability of the court room.
Availability of the judge and all the key players.

These would be the main ones.

Her statement to me reads as though she can now say 'at least we've tried everything', which she certainly has. She's got Dr Hirano to her baby and she's going to have an answer about whether it is or isn't possible for him from a doctor she trusts (not to say GOSH are untrustworthy, they're actually more expert than Hirano, but CY values Hirano's opinion more).

If it's a no, it'll be easier for her now that it was.

c an c insisted he doesnt feel it and im not diputing that-but they also say he can feel them when they tickle him-well how is that possible if he cant feel pain?

Quite! this has been the thing all along

Either, he he is well enough to feel pain, in which case he is feeling the suctioning and the swelling and the tests etc, and would feel the side-effects of treatment along with the trauma of life support (unless he's fully sedated, pain relief doesn't totally stop you feeling invasive/traumatic interventions)

or

he's not well enough to feel pain, in which case he's pretty far gone

Either option isn't a great case for further life suppor to enable treatment is it?

what annoyd me aswell is the fact jf had to order them to do the eeg thy were refusing still

what good was that going to do

Tinsel twins what is nonsense is that the man with mnd knew from the minute he was diagnosed how he would die. So he had plenty of opportunity to do the deed then if he did not want a painful death. When I first saw neurologists about my foot, they took one look and said thus could be mnd or ms. The first words I said was 'well better make sure because if that us the prognosis I will end it within s month'. They were shocked to say the least but I know I would not want to live with that, my red line. Thankfully after brain scans it was diagnosed as distonia. So point is there was plenty if time to end it while able. It just depends if the individual us brave enough to do it on their own, but there us no need because palliative are can be provided so a peaceful, dignified and pain free death is possible.

no its not tinsel its pretty conclusive to me damage is irreversible

dosnt look like that meeting concluded with any answers if dr hirano is still waiting for test results

Gabs it was GOSH wanting a longer one than the US doctor wanted, so CY likely felt the longer one furthered GOSH's agenda as the family sees it.

yes thats what i mean theyre still obstructing

DM still misquoting the 56% i said somthing in the comments

but there us no need because palliative are can be provided so a peaceful, dignified and pain free death is possible.

There are degenerative diseases which are not as easy to manage with paliative care, and don't end in a quiet dignified slipping away in bed surrounded by loved ones even with end of life care.

And for people with degenerative diseases, many of them really don't want to die even if they want to end it once their condition worsens, it's not fair to say "well they coulda just commited suicide when they were well" because when they're still well many want to be eeking the best out of life and the time they still have

Suicide has other issues that a medicalised euthenasia can work around, such as nullifying insurances

It sounds like they have completed the tests?
Not sure if they'd need a sleep EEG as I seem to remember it was mentioned Charlie has no sleep/wake pattern anymore.

Sorry tinsel thread moved so quick my post was answer to your post aggged ago sorry for confusion x

I think the delay in it getting back to court could include a number of factors:

Some of the news reports yesterday said the judge was on leave. Maybe he's off all week.