Charlie Gard (16) Future implications arising from case

[Puzzledandpissedoff]

If anyone wants to post, perhaps we could consider what implications today's case might have for others in future ... ?

I am not sure if that is true as that has only been seen by the family, not by anyone else.

*said

No. Dr Hirano and Italian doctor (who comes across as just agreeing with Dr Hirano/the Pope) are saying they would still treat based on brain scan but muscle scan is now so bad that he would never get off the ventilator - so the proposed improvement of treatment is impossible.

So they now will not treat him.

I seriously hope Columbia University has taken notice of his conduct in this case

How can we know if the uni was putting pressure on him to go beyond his comfort zone or not ?

We use similar words to describe things, but our institutions and the values, systems, expectations can be quite different.

It sounds like this will one day be a huge medical break through. Prestige matters, attention matters, profile matters, politics matter.

I'd like to hear from the man himself before convincing myself that he has been a weak link in the chain that caused it all to fall down and end up in court. Several times.

I'm sure he made choices and decisions he might not replicate in a similar circs, having seen potentially very unintended consequences. But I'm not sure enough about all the many gaps in what we know to say we can confidently fill them in with the idea that it is primarily his personal conduct alone that caused all the issues.

I think under the circs he might release a statement or sit down for an interview. In which case things might become a little clearer.

Gosh is going to be the scapegoat in all of this i feel :(

I've been thinking about what I'd have done, as a scientist, if I was in the Professors situation. It is a bit different as I'm not clinical, but have recruited patients into studies.

It is easy to get obsessed with your area research, in fact I'd say that it is necessary because of the time and effort that a study requires. It is also easy to stop thinking about the patients as people and merely reduce them to interesting cases. I'm not saying that's right and I'm not saying that is what happened here - just that it is easy to do. I've done it. Most of my colleagues have done it. Sometimes you do have to rely on a trusted person in your life to tell you to stop and remind you that the test results you got so excited about, that was going to make the difference to your research, get you the Lancet paper is a real person with real feelings and a family who are affected by their illness.

The whole thing has just been a mess. Its been a catalogue of issues that have led to this protracted case:

1. Respecting (appropriately) patient confidentiality, created a void in information that was being circulated. We only heard C&C voices (and the CA). Void = misinformation spreads like wildfire.

1. This obsession with donating £, selling merchandise, setting up go fund me pages for all sorts, with little thought/moderation or time to reflect.

1. Social media - driving the above 2 points. The fact that clearly very poorly educated people are commenting and re-tweeting misinformation and quite frankly tripe.

1. Lazy journalism - easier to quote people's FB pages than get to a real story, admittedly confounded by patient confidentiality, although Charlie's personal data and records were in the public domain anyway, being shared by CA (albeit when it suited) and in court documents. Clearly unbiased journalism should have won the day, but they couldn't be seen to go against what two grieving parents were saying.

1. People sticking their nose in to further their own agendas - Trump et al - and for financial gain.

1. The desire to be part of a cause driving CA activities. I would love some academic research on them, what they thought they were fighting for, what motivated them (the few that were more than keyboard warriors). This would have gone away more quietly were it not for them. Quite honestly, some of them should have been arrested for the things they were doing and saying.

1. Lack of understanding of a complex, sliding scale of a condition. Patient A should not be compared to patient B. People then seeing a child with a "similar version" of the condition and then assuming therapy would work. Also people not understanding the rights of the child as an independent being.

1. Drs making vague statements about treatments, success having never seen the patient. The way some of these then get misinterpreted as being the golden ticket.

1. The fact that it was a baby.

I am glad to have followed the discussion on MN. It has been fair and balanced, with views from medical professionals, parents and sadly those who have experienced similar scenarios. It has given a lot of food for thought. Sadly I think we all know legally, where this is going next. I just hope that this doesn't set a precedent where parents ultimately decide what happens to children.

Things I hope come out of this case

(a) Facebook and Twitter are forced to clean up their reporting systems for threats against those doing their job who cannot answer back.

(b) UK Courts ban all evidence from medical experts who have not examined the patient regardless of circumstances

(c) When there is a breakdown in relationship between doctors and patient family, mediation is compulsory

(d) Doctors are allowed to carry out non invasive tests even if the family do not wish it. Invasive will always still need agreement.

So we are given to understand, Wedonotsow

The italian doctor (who shall remain nameless, beyond!!) isn't just a pope-doc though - they are high up (vague) in a paediatric neurology dept (also vague)

Here's the GOSH donation link.

You can donate a one off amount. I understand not everyone is in the financial position to donate (I'm not at the moment, but will on Friday when I get paid) but every little amount helps.

Also, kind words on the Facebook page or a direct message on their Facebook would be appreciated, I'm sure. They said they were passing them on to the staff.

donate.gosh.org/

@frasersmummy

I wasn't planning on actively commenting on this thread but I just wanted to say how very poignant I found your comment. I'm so very sorry about the loss of your son. My parents lost their firstborn to medical negligence and I believe that the knowledge that it need not have happened - but for the negligence of people in a position of trust - made their grief, if not greater, then more bitter, jagged and destructive than it might have been. It makes me very sad that Charlie's parents' suffering might be made worse by a mistaken belief that he could have had a healthy life like any other boy and that they've been robbed of this.

Apart from the measured comments/posts here, and the SM comments (which I understand have been stopped now) I really doubt there is THAT much interest in the case anymore.

That might sound heartless, but if you think about it, only a certain cohort were really invested in it anyway.

The decision has been made. Onwards and upwards now, and I doubt there will be much in MSM going forward now.

Unless Gards announce to the media that Charlie has gone.

Will they do that do you think? Or will they enjoy quiet time with him, bury him privately and have a family celebration of his life in private? And announce it weeks later or something.

I really hope that when the child passes it is not announced anywhere in public. But I am not the arbiter of that of course.

Oh my heart is breaking for them. It's the right thing but it's awful. I've just had to explain to dh why I was crying, I haven't done so very well.

I do hope they know that even those of us who disagreed with them admired them and just wanted the best for that wee lad too.

OK - I am being rude about the Italian doc

However one problem is that there are massive cultural differences in how medicine is practiced from country to country, which C&C are likely completely unaware of. I work in an area with a big Italian population and some of them have very different expectations at end of life. It's not uncommon for them to be refused something in the UK for being pointless and painful, go and have it in Italy and then come back in even worse condition, just as they were warned, now v regretful and struggling even more with the fact they are dying.

The fact the Italian doctor was prepared to give the treatment to me doesn't necessarily mean anything as it could just be a different cultural approach to end of life care.

@Ta1kinPeece

Good post.

I've not kept up with the threads but followed the story.

I feel so sad for CG parents. They fought for a chance for their son. They found out in the most devastating way about the latest MRI results - but once again they've made the decision they feel best for their son.

Hulder Exactly..I agree 100% with you about Hirano.
Why couldn't he have hopped on a plane?
Why one earth didn't he read the court Judgments- there are 29 pages, but not 'difficult' to read.

A very clumsy analogy..a friend restores antique furniture -he will not begin to give a quote until he has seen the item in person, and examined it thoroughly.

So a Professor making broad promises that a vulnerable mother and father latch on to is most unfair, and [in my opinion only] cruel to the potential patient and parents.

Had the Hirano come over initially, it would have cut short the anguish.
I trust GOSH implicitly in their judgement of a child's condition.
They want what is best for their patients.
Hopefully C&C will be dissuaded from further legal action- but I doubt it.

Ta1kinPeece

Yes, totally agree, but I wonder how viable it is to expect social media to self-moderate and take responsibility, when cases like this will have generated massive footfall and activity on their sites. It will need something more than that do you think?

I don't know how far the electronic communications acts go to cover things like this.

This is such a sad sad state of affairs, but in another sense, this little boy is going to have such an impact on the world I feel.

Yy holder, I agree that it's probably a cultural difference. I just thought it wasn't beneficial to anyone to claim they were just a random agree-er rather than an expert in their field :)

I have a feeling this thread may dwindle too.

There isn't much more to discuss really that hasn't been spoken about before now is there? The parents have accepted the inevitable. Albeit with many reservations, but they have, and their child will die soon. May he rest in peace.

But anyway, who knows. I'll hang on for a while.

I think if I could say something to the parents, I'd want them to know that those who disagreed only did so as they felt there was no chance. I hope the parents know that if there had been a viable chance for Charlie to meaningfully benefit from treatment, we'd be behind them all the way.

I hope they get counselling. I also hope they keep some of the donations. Some may disagree, but if they can keep some of the donations to avoid financial stress, I'd be all for it. Obviously the majority of it should go to a good cause, but they at least deserve to be free from financial issues.

I'm sad as they'll never come to terms with the fact there was nothing more to do for their son. It'll always be a case of what if. The one comment that sticks out from their statement is: There is one simple reason for Charlie's muscles deteriorating to the extent they are in now- TIME.

For me that sums it all up. And it's so terribly sad.

Gosh is going to be the scapegoat in all of this i feel

I honestly don't think they will.

The bulk of the public, from many varied backgrounds (political, class, etc.) have seemed to lean unwaveringly pro-GOSH for a considerable length of time.

It was muted to some extent becuase... who wants to be unkind about parents in those circumstances ? But then the united full force of people's support for GOSH really rose up and crashed all over CA-esque supporters when the issue of death threats and harassment of stsff/families/patients was revealed.

In contrast the family's support is now at risk of being splintered.

There will be those who are pro life at any cost and won't approve of their decision to not fight to keep him on life support now the American treatment is off the table.

There will be those smarting that they have spent money and made an effort to travel down to the court, or make keyrings all weekend, or just bought stuff from the shop ...only to discover that the family knew the outcome at the beginning of the weekend. Most people can understand why they wouldn't go public at that point. But some will take it as a personal slight, or feel used/taken for granted. Some of them are very emornally atrached to the parents and Charlie. They won't necessarily understand that cannot be a quid pro quo kind of realtionship.

There will be those who made donations who will have fixed ideas how they would like it spent and may take exception to the family's final decision in that regard (when they make it).

Do you see what I mean ?

Gosh's support is huge and solid in terms of unity.

The family's is much smaller and rather friable due to some upcoming ideological and feelings based conflicts within the sub groups of supporters.

GOSH will be fine in the long run. Not so sure the family will be.

I don't want to be interpreted as undervaluing what GOSH has been through, it has been absolutely awful and utterly uncalled for. But they are far better placed than any of the other protagonists to regroup, recover and move on. IMO the united strength and size of their support will be no small help during that process.

I think there are a few vital lessons to be learned from this case that are very much linked...... mainly that greater privacy is needed from all court cases involving clashes between parents and Doctors. There also needs to be much tighter regulation in using children and their medical needs to crowd fund. This all got into the public domain when the crowd funding pages took hold and were picked up by the media. Charlie Gard had no say in his name becoming a household one. And that isn't right, no matter how well it was intended. That then leads to much tighter controls on social media pages, the Charlie's Army has been a heinous example of mob mentality without any fact finding behind it.

I think the Judge was spot on about the mediation too. This should never have got as far as it did, and I think a much tighter timeline needs to be kept to involving artificially maintaining life.