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

Yes I remember the Fear starting - does it get any easier as they grow older, probably not.

Yes.

The Fear evolves. Like a Pokemon. But not the nice yellow cute one.

The communication thing was discussed recently on another thread

Relatives have been complaining that staff have hand-over ("sitting and chatting) or "chat" to each other away from bedsides (i.e. communicating about their jobs/patients) or if staff stop to write notes (communication again)

And "public perception" is pandered to in that respect and what suffers is multi team communication.

And then you get people feeling they're being told different things by different people (even if that's not really the case because the two things might not be mutually exclusive), but without staff allowed to "chat" or hand over properly, people won't necessarily be using the exact same language with patients/relatives?

It won't show brain development bit it will show what levels of electrical activity there is within the brain (if any) and whether that activity is normal or abnormal. They use it to look for seizure activity too.

There will be some activity just due to the tiny signals detected, that doesn't mean his brain is functioning anything like normally, you can (and I know this sounds flippant) get a recording from a jelly.

Link shows how artifacts show up on EEG recordings. I'm not expecting anyone to become an expert just that I think it is interesting to see how easy it is to have something show on an EEG that is medically meaningless.

es.slideshare.net/ranjithpolusani/artifacts-in-eeg-final/16

An eeg measures electrical activity across different areas of the brain. It can show active seizures of various types, I do believe previous seizures too (that based on my own past rather than study!), encephalopathy and brain death, based on what bit is showing what activity.

From CA

If Charlie is too ill to travel to the US for treatment and presumably the medication is not licensed for this country, why can't they set up intensive care in the US embassy in London and treat him there.

If Charlie is too ill to travel to the US for treatment and presumably the medication is not licensed for this country, why can't they set up intensive care in the US embassy in London and treat him there

I'm just baffled as to what some of them think that ICU and ventilation etc acually is

"I hope that this may bring about increased involvement in the parents with communication and possibly decision making at an earlier stage"
I really don't see how that would have helped here, given the GOSH were already planning an ethics application for nucleoside therapy when Charlie had the seizures and suffered catastrophic brain damage, as GOSH believe(d). That is the point where the split occurred --the parents wanted the planned therapy to continue, the hospital thought not given the new development. I don't see, given out understanding of the events, how this could have been prevented by more or better or earlier communication?? And if not Charlies case, in other cases there is always going to be the possibility of a sudden unforeseen 'event' that changes the whole scenario.

The issue here is Charlie and childrens best interests, and frankly I can't see anything better than in extremis, the law has to step in when experience and care and love from the parents and from all the staff treating and caring for the child cannot come to agreement. In the interests of those who cannot speak for themselves, the state in terms of the law has to step in. There may be procedural steps that can be improved in hospitals, but I'm sure that their current ethical guidelines have already evolved given court cases. Because sometimes you just have to go to the law.

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.

I hope that this may bring about increased involvement in the parents with communication and possibly decision making at an earlier stage

All the communication in the world is not going to stop some parents from refusing to believe that their child is as ill as they really are.

zeezeek
I think you have probably hit the nail on the head there. I have long thought C & C have been in denial about how ill poor Charlie is, and as a result over estimated how much benefit he will get from the experimental treatment.

"If charlie could maintain basic functions then it would be a whole other discussion."
Yes, because ethically for the doctors and healthcare professionals, there is a distinction between letting someone die by removing something (like ventilation, or even nutrition and water in some cases), as regards actively killing them. The lines may be slightly blurred, as when medication given to reduce pain or suffering may reduce life expectancy.........
But that isn't really the issue here, where the question is do we have a life that is being actively prolonged when that is against the best interests of the patient. And when the patient cannot make their wishes known, who is to speak for Charlie, that is the question? OR doesn't he get a voice.......................

lovely
Yes I remember the Fear starting - does it get any easier as they grow older, probably not.
It never goes and expands to include grandchildren too. I guess it is part of life.

the fact remains that there are children out there who have a not much higher quality of life, and whose parents believe that their lives are still worthwhile

I posted about this upthread. I've worked with many terribly disabled children and adults with the kind of loss of function you're describing. But they were disabled, not ill. Their bodies dealt with damage and different functions as their normal, and they were mostly healthy and very much alive. This isn't about disability, it's about illness. Charlie's body has been trying hard to die for the last seven months. This is not about intentionally ending his life because it has no value or purpose. It's about the ethics of continuing to aggressively force a child's body to stay alive long beyond the point of any hope and to wring the last possible second of medically achievable life out of it no matter what the experience of that may be to the patient.

Ventilators are not gentle. Rescusitation often breaks ribs. There will come a point where no matter how many electric shocks and needles jabbed into the heart and drugs poured into a body that it will die even on a ventilator. As someone said further up thread, ventilation is basically stick the body on life support and see if kept alive, can it right itself or progress in any way. If it doesn't, and that further degeneration is inevitable to that last moment of death, is that how a child should be treated?

If Charlie was severely disabled but well, and that might be medication dependent, oxygen dependent and tube fed dependent, but well, then no one in the UK in particular GOSH who specialise in very profoundly disabled children and fight their corner very powerfully, would say for a moment his drugs or his feeding tube should be removed to cause his death. I hope very much this treatment can give him what very profoundly disabled kids get - to go to school, to go swimming, to enjoy sensory rooms and music therapy and the other things that I've seen make profoundly disabled kids and adults light up even when they could barely respond. It will be wonderful.

But I absolutely don't agree he should be aggressively treated to wring every last possible second of medically achievable 'not dying'. I can see exactly what is in that for his parents, but I can't see what is in it for him.

Our laws on euthenasia should not be changed. We cannot be trusted that vulnerable people would not be abused by a change. You can kill yourself anytime. The man with mnd still has control in his arms enough to put tablets in his own mouth. He knows at the end he won't be able to so why wait till then so that someone else has to assist you in your own death? He says he doesn't want to die a painful death then now is the time to do it. He says he wants to say goodbye to his family. I have already done that by telling them if my last lot of treatment doesn't work I will not have anymore. So every minute since I told them is in a way saying goodbye. Sorry, but its only my opinion.

Taking pills is not an quick death. Why should dogs and cats have simple deaths but humans cant.

Several people on these threads have referenced Jennifer Worth's (Call The Midwife author) book 'In the Midst of Life', which is on Amazon and available in Kindle. It's well worth a read.

Its about her work with end of life care, and the distress and unnecessary medical suffering that can be inflicted when there is no hope or possibility of recovery, just of achieving another few hours or days of survival, because medics or families can't agree to let go. She argues for the quality of someone's end of life to be the priority, not the avoidance of it for as long as is technically possible at any price, usually to meet the emotional needs of others and not the patient.

Also if you believe that then nobody should be allowed to stop treatment because vulnerable people can fall victim to that.

Online: We too have had family members by marriage who were slaughtered in the Hitler Death camps, and have seen the devastation it left people in who survived these losses...so comparing GOSH to ''Nazis'' makes my blood boil too.

I cannot fathom why these nutcases who spout this nonsense can't be sued..for bringing a fine Hospital's reputation into disrepute.

There does seem to be a lack of even basic common sense on CA.. E.G The morphine conspiracy:'' GOSH are deliberately sedating Charlie, and everyone knows morphine is bad for babies with mito.''

The comment that angered me was : ''Charlie has a Dr now who wants to look after him''

I suppose the months of expert care by GOSH count for nothing?

There was talk of a ''Charlie's Law'' whatever that might mean.

Also members of CA who treat it as a sort of real life ''East Enders'', they were miffed that CY was 'offline''.

We all want what we feel is best for Charlie..but I did wonder if Charlie's family might try and take legal action against Heavenly Hirano if things go awry?

Our laws are robust and any change could create loopholes that unscrupulous people could use to get rid of a vulnerable relative.
You will open the floodgates if you change anything. Palliative care is maintained at home as well as in hospitals and hospices. This should have been explained to the mnd chappie . I nursed a lot of people with mnd from beginning of diagnosis till the end. Pain was controlled all the way.

Sostenuato: You raise a very valid point.. I heard of someone who had a desperately sick relative who was terminally ill, and a family member sat with the person until they died...It was evidently peaceful. Before the days of ''Dignitas''

That would be a very hard thing to do, though. [for the relative]
Not sure of the legal position either...if a relative was ''just sitting'' with their loved one knowing that an overdose had been taken, It might be illegal not to call for help?