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

I have to say as a lurker that I am very impressed by the respectful discussion on here and feel I have learned a great deal. Thank you to everyone who has been posting such thoughtful and insightful comments. It has made me think very deeply about the whole issue of preserving life at any cost, and where to draw the line- which is actually a really important discussion to be had and it's certainly not as black and white as many people believe. I will continue to lurk and follow the thread but probably wont comment much as I'm not as knowledgeable as some of you!

My dad died in March from Cancer. He was cared for at home on a morphine drip.

The GP expressly told my mother that if she thought he'd passed away, absolutely NOT to phone an ambulance but to phone him instead. He said if an ambulance was called paramedics would have to attempt to resuscitate him. This was in no-ones interest at all, let alone my dads.

I think people make life and death choices all the time, every minute of everyday.

I'm torn on right to die. I agree with sos about the potential for abuse, but I can see why people want to leave it to the absolute last minute rather than kill themselves while they are still physically capable.

Also agree with the post upthread that it isn't very polite to discuss riven while she's not here.

This whole area is very nuanced and not at all black and white as it is being portrayed. It isn't easy to assess quality of life. I'm amazed that people think that a renowned hospital would go to Court and claim that a child has no prospect of a quality of life without being absolutely sure of themselves. And I'm even more amazed that people would doubt their ability to assess that, given the thousands of severely disabled children that they treat and improve the quality of life of, year in, year out.

I had a very elderly relative, let's call her Ivy. She was in a care home, frail, sometimes a bit confused, but still able to move about, see family, interact with other residents and generally enjoy life.

One day Ivy had her tea in the residents' lounge, went back to her room, sat down and quietly and peacefully passed away.

Ivy's daughter told me that what she found most upsetting was that the care home staff tried to resuscitate her, rather than allowing her that peaceful death.

If they had managed to bring her back, what would it have been for? Perhaps a few more months, a year or so, of increasing frailty and confusion?

Question...
If you have a DNR med alert, do paramedics and HCPs have to follow it?

Can we please not bring a previous poster's lovely DD into this? Particularly as in this instance you're comparing eggs with apples.

Bishop worded that better than me!

MissHavishamsleftdaffodil Excellent post.

If you have a DNR med alert, do paramedics and HCPs have to follow it?

If it's all in place properly, you need to put an out of hours message on 111 so it flags up to paramedics and I'm not sure if hospital DNRs and community DNRs have to be done separately

I'm torn on right to die. I agree with sos about the potential for abuse, but I can see why people want to leave it to the absolute last minute rather than kill themselves while they are still physically capable

I think that's easily worked around
You just sign it while you're still well, like with power of attorneys, and then it doesn't kick in until you're not well.

Advanced care planning. It doesn't mean you would have to die while still well.

So does Charlie have a resus plan? I would expect him to, but I wonder if his parents would agree to it given their thinking. Hopefully other HCPs on here will know what I mean.

Cy has referred to "nearly losing him" on several occasions last week.

Makes me think he is being actively treated/resuscitated if he deteriorates.

Our laws are robust and any change could create loopholes that unscrupulous people could use to get rid of a vulnerable relative.

I think if you compare it to power of attorneys you can see how it could work.
They can't be signed once you're at the point where you need them, they have to be signed in advance while you're not vulnerable.
Even once signed, a cause for concern can be put in place if there are any doubts/concerns about it.
If someone has POA but the person they have it for still has capacity, the person with POA cannot override the person

But people would have to think about death in advance

A system similar to POA would work well for people with degenerative diseases, but wouldn't work for say people who had a sudden trauma that altered their quality of life, unless they'ld previously sat down and put some advanced death planning in place.

In the CG case surely this would be not applicable- he's a baby and therefore cannot express intent. Other people have disability from birth and also cannot have their wishes known.

So does Charlie have a resus plan? I would expect him to, but I wonder if his parents would agree to it given their thinking. Hopefully other HCPs on here will know what I mean

USUALLY
(but this is for adults)

You can refuse consent to BE resuscitated, but you cannot demand to always be resuscitated, because that's not how consent works

Think of it like an operation: you can refuse to consent to have it done
But, you cannot walk up to an surgeon and demand that they DO operate on you, the offer to operate has to be based on their own clinical judgement. Same for resuscitation.

Relatives often think that someone cannot be made DNR without their permission, this is not the case. They should be informed, but it's not their decision.

This case is somewhat different though. I think given that the case is deciding whether Charlie is for treatment or not, they'll be put in a position where they do have to resuscitate while the case is pending?

Yes, you can out info on NHS 111, my GP has put my consultant on there and a plan in case need to go into hospital. So think as mentioned it would go on there, they also do written care plans where you can do advance directives. You can do these for both physical and mental health situations.

I have to just say btw that this is not a new thing, letting a terminally ill baby die, parents are usually told whats going to happen and how bad the situation is, and I presume they ask to remove life support, I am 44 and this has been going on as long as I remember, its not murder, its letting someone that is not going to live long slip away without suffering. When my mother and father were asked to let my brother go that was 30 odd years ago, it the humane thing to do. There are a lot of people that are going through the same thing,not arguing with the doctors and nobody to support them either, can you imagine how heart breaking that is?

He said if an ambulance was called paramedics would have to attempt to resuscitate him.

There is not enough awareness that you can put messages on the 111 system which are flagged up to paramedics in cases like that. Lots of HCPs don't even know about it/how to do it.

reallyanotherone, that is even more heartbreaking, shows that he wants to leave the world and if they have to keep resusitating thats really cruel, I truly think he is not long for this world treatment or not.

Wrong thread

Tinsel yes, I had to ask my GP to do it and then she did. (111). It seemed to vanish when transferred to a new practice so just had to get them to do it again

You can kill yourself anytime. The man with mnd still has control in his arms enough to put tablets in his own mouth

rubbish! firstly, someone would have to put the meds in his reach. They would be incriminated.

Secondly, suicide by ingestion (overdose or poison) has a hight failure rate and just lands you in hospital feeling poorly

As said before, if you had a sick/terminal cat, you wouldn't just overdose him/her with their regular or your household meds because it would be CRUEL and violent and painful and distressing. You'ld only have them put down if it was done properly.

I rang 111 to check, and they told me in that situation of needing to call, we (me or family) need to ring 111 and tell them there is a 'plan of action'. So guess that will be the same for others with stuff on there.