Pollyana

That's all we can hope for really.

morpeth

The doctors, nurses and staff I am not criticizing as I don't know enough to do so. They have competing issues in arriving at a decision- resources, schedules, ego, etc etc. The parents have one priority, their children, and it seems the overall trend has been for the state in its infinite wisdom to interfere more and more with that responsibility. The nurses dealing with children in particular have a very tough job and it does have an effect in that they have to developing a defensive mechanism between empathy and being able to do their job professionally. Not easy as I know from members of my family who were nurses.

I don't know enough whether medically the parent's wishes are correct, but I do know if it were my child I would do what I thought was right for my child regardless of what some judge says.

yellowroom

so would 99.9% of parents. The reason there is a facility to go to court is because of the tiny minority who's idea of "the best" is not actually in the child's interests and is actually harmful. E.g. wanting to pray away the diabetes, or cure cancer with homeopathy, or perform FGM.

This thread is full of sympathy for the parents and the terrible position they are in. But they need somehow to accept the reality - there is no cure and by the sound of it, Charlie is so dependent on the life support that he'll never leave the hospital, even to go to a hospice or home to die.

Pollyana

Very true, he'd never survive off the life support long enough to get to a hospice. If they could get one to take him with all the media attention.

morpeth

I cant disagree that some parents will make wrong decisions on medical or other issues.

I just side with the parents themselves, and for the principle that the state interferes too much overall in the responsibilities of the parents- they are fighting for their child, obviously looking for anything that may help. Doctors are not infallible, and medical surprises do occur. In this case the GOSH doctors cant do much more, parents have found a reputable doctor offering experimental therapy and found funds to pay for it. Yes I think at this point parents should be able to make final decision.

What I don't know is how relations between GOSH and parents got to this point, there may be some blame on both sides.

yellowroom

Some parents will get it wrong, but the "state" interferes too much? Is your position then, that the UK law is wrong and children should be chattels of their parents, with them having the final say on all aspects of their life until they are 16? I support the UK law and disagree with the notion that the state is interfering too much - if it was, then life support would have been turned off months ago and the parents would not have been able to present their case to an independent judiciary at the High Court, the Appeals Court, the Supreme Court and the ECHR.

The funds are a side issue - charlie is far too ill to survive a transatlantic flight, he'll never get to America, but the treatment could be done here - and again, GOSH was going to do that until he deteriorated to the point where it will not provide any benefit.

And again, the legal aspects of providing an experimental treatment where there is no clear benefit and no informed patient consent make this extremely tricky for the doctors, which is why they are declining to do it. I have seen it argued that they should just do it as other children could benefit from knowledge gained. The only data that would be of any use would be evidence of whether it really did cross the blood-brain barrier, and some bits and bobs of how the treatment affects different parts of the body. This information usually comes from animal studies, so Charlie would be a literal lab rat. This is a huge no-no - without trying to stray into Godwin territory, we don't experiment on humans any more.

yellowroom

To be fair to the Pope, I think he's been misquoted and misunderstood - his actual statement was which I take as a message of support, but saying nothing about rights and wrongs of continuing treatment, only that his parents should be allowed to be by his bedside - which I don't think is in any dispute.

And in case I'm sounding a bit over-invested in this case - I'm not a medic but a scientist working in a related area which also covers medical ethics and clinical trials. Stepping aside from the human tragedy at the centre of all of this, I find the whole situation fascinating in terms of our "post-truth" society where feelings are as valid as facts, the rejection of experts, the scientific illiteracy of the media, the impact of social media and a judge trying to rule by law and not treat it like an X-Factor vote.

Pollyana

Interesting to hear what your angle is, it is a fascinating situation for so many reasons - social media has a lot to answer for.

Twinkle0927

My problem with the pope getting involved is that to me it's wrong for the church to put so much into one child with little chance of improvement (and, compared to many children in the world, he is living very comfortably and has excellent care at his disposal) when there are millions of children across the developing world (many the result of his church's teachings on birth control) that are dying but could be saved by very simple things such as mosquito nets, vaccinations, clean water. Why do so much for one instead of a little for many?
I went to a catholic school and my parents raised me as a catholic. We were always told we should help the most unfortunate first. Whilst Charlie's case is extremely unfortunate, his situation is not the most unfortunate. If the pope and the Catholic Church has millions to spend on life support and an experimental treatment that *might* bring about a 4% improvement to someone who is never going to leave the hospital, why can't they spend the millions on vaccinations or water filtration kits?

Jerseygirl

Jack8602

Didn't realize the pope got involved until reading this thread.

Good old religion eh, saving one kid but leaving millions in dire need.

Anian

It's always a bit weird when the "Leave it up to God" crowd are advocating medical intervention. Reminds me of the Terri Shiavo case.

kimilseung

Apparently the hospital didn't want the American evangelical guy, Patrick Mahoney, to be by his side for security reasons. Though they relented.

yellowroom

I think that was more the circus of having the parents, the pastor and the photographer all around the bed of a sick child in a paed ICU ward where there are other patients and families (and two visitors per bed). I suspect they were told "not now, it's not convenient" rather than "never", which is why it eventually happened.

Oakvillian

Having had recent experience of a child in an extended stay in a paed ICU, I have an enormous respect for the medical staff - paediatricians, other specialists, nurses, respiration techs and others - who work the PICU. It takes a very strong mindset to detach the natural emotional investment in the well being of a child, from the dispassionate analysis needed to decide what is in that child's best interest.

Interestingly, in my case, there were several of our "favourite" nurses who declined to join a close-knit primary care team when one was established for my daughter. One went out of her way to explain why:

• The average stay for a kid in ICU is around 3-4 days.
• In this part of the world, nurses work two successive 12-hour day shifts, two successive night shifts, then a 4-day break (i.e. 48 hours over 8 days or the equivalent of a 42-hour week).
• Normally they won't see a patient again after one shift-pattern rotation. So they are able to maintain that detachment fairly easily, and tend to thrive on the new set of challenges that greets the next set of shifts.
• For long-stay patients it becomes very much harder to maintain the degree of professional detachment required, which is why many choose not to be assigned back to the same patient for successive shift rotations.

That's an aspect of working in a PICU that I never would have considered.

In all of this - and all the more so in a convoluted and complex case like Charlie Gard's, it's absolutely vital that there is a completely dispassionate oversight mechanism to safeguard the interests of the child. In the case of the UK, that process is managed through the courts. The medical professionals have an opinion; the parents have an opinion: neither of these is, nor should be, the final arbiter of the best-interest interpretation. In this part of Canada, there's a Children's Advocate whose role is to represent the interests of a minor child, potentially against their own parents, medical or legal experts. In the UK I don't think such a role exists; instead, the Court (i.e the judge at whatever level) is obliged to take the minor child's interests into consideration in addition to all the other evidence presented.

I absolutely agree, though, that any sort of political grandstanding by US politicians in trying to score points off the NHS is utterly despicable. Since it seems, from what we read in the press, that poor Charlie's death is inevitable and rapidly approaching (and that the practicalities of transporting such a seriously ill infant make treatment elsewhere completely impractical), the best thing everybody could do is leave the parents and the staff at GOSH alone and allow them all what little peace and dignity they can muster after all the brouhaha. My sympathy goes out to them all.