Charlie Gard- State decides or parents?

Axl

What's an NBT compound? (edit, think I've found it.)

From GOSH's statement, 24/7/17;

"10. When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie."

IronGiant

Nucleoside Bypass Therapy.

Used extensively in the also rare cases where children have a mitochondrial DNA depletion as a result of missing an enzyme that recycles nucleosides to make or repair MtDNA.  Hence why they have low levels of MtDNA and usually, muscle weakness, not Charlie's symptoms.

I still don't know what Charlie's condition was caused by, but if it was the same condition I think we would have heard by now.

IronGiant

I am sickened...

Toko Black

It wasn't meant to be crass, nor was I comparing such to the case of Charlie Gard.
I am comparing it to real situations the law and the system has to make decisions upon across the whole spectrum - specifically to give an example of the generally quite clear cut at one end to the grey areas at the other where Charly's case would be. I felt it does need to be made clear to people that this is a scale to make sure they view the case and the decisions in the right context ..... so we all understand why we have the system in place rightly or wrongly.

We know there are things we need to intervene in, but how do we actually decide and at what point does the it change from obvious and clear to grey - currently that decision is derived from the law, the courts and the UK's medical experts.

Cliff

Yes, the system worked, as it is supposed to in this country. (It was slow and costly but that's another issue). But the system excludes the parents. They are not allowed a say in the matter. There child was effectively held by the hospital. (I know it wasn't practical for them to remove him but even if it had been, the state had decided the child was in their care.)

The decision was made by a judge in the court / doctors. The parents were periphery to the issue.

Yes.

Exactly. That is what I have a problem with. The doctors should advise in strongest possible way. Then it's up to the parents. Many disagree with this, but usually the reasons are flimsy- like he is suffering or it would subject the child to more suffering. There are plenty of children who are life support now and they all suffer to a certain extent. Everyone suffers when they have an operation.

Well I knew you would bring that one in. For me it, religion is irrelevant.

OK let me set out my own stall. If I was in the same situation, I would hope that on advise from the doctors, we would let our child pass away. The chances of any form of reasonable life would be slim. In this case the judge and the doctors probably took the right decision. However, my complaint is that it should not have been their decision. The parents were excluded from making a choice. The child was effectively taken from the parents.
Apparently there are many cases similar to this but due to the secrecy of our family courts only a few reach the headlines.

If you want to spend money trying for that 1 % chance you should be free to do so.

Toko Black

It was not nor ever has been a case that the decision is up to the doctors.
The law states that in the rare cases where parents and doctors disagree over what is best for the child, the Court decides based on the evidence and the law.
The only decision the doctors have or make is whether or not they are sufficiently worried enough about the welfare of the child due to seek a ruling/decision from the Courts.

Cliff

I said doctors /courts.  Doctors put their evidence to the court and it decided that further treatment was a waste of time. Parents didn't get a look in.

Toko Black

I think it's misleading to say it was the doctors/courts.
It wasn't.
The doctors provide their evidence and case to the court, the parents provide their evidence and case to the court.
The court decides according to the law.

If you disagree with the law, so be it, but you can't blame the doctors or say they had more decisions and power than the parents.
The only thing the doctors have is experience and knowledge which is provided as evidence to the court, but ultimately it is still the court that makes the decisions.

tapzilla2k

If not for the NHS, Charlie wouldn't have made it this far. The Parents choices were limited from the start.

The Judge made a decision based on the evidence provided by the Hospital Doctors and other experts the Parents legal team bought in. It's down to the Judge to make the decision, they don't always rule in a hospital's favour either.



Charlie wouldn't have made it this far, without the advances in medical science. This is what's opened up a can of ethical worms - What do you do when you can prolong life to a certain point, where treatment options narrow or end ? It comes down to Quality of Life vs Quantity of Life. An issue Doctors grapple with on a daily basis alongside following the Hippocratic oath. Adults are fully capable of making their own decisions about trying experimental treatments. Children can't do that and parents aren't always best placed to make those decisions when emotions are running high. So you need a system where all the evidence is looked at and a decision is made.

I think what we really need is a more rapid assessment of experimental treatments within the NHS to see if they are viable and if the NHS can't provide them at least the Doctors then know there's an option for parents to rise funds for treatment overseas if the child's condition merits giving that treatment a go.


It's a medical question, not a religious one. Fact is Charlie and others born with genetic disorders would not make it this far without the advances in medical science. We are going to face wider ethical questions in the coming years i.e. the advances in understanding brain injury is progressing rapidly. Where you might have switched off life support before, you might not do so in the future.
It's time Politicians debated where we stand on a multitude of questions in regards to medical ethics.   

It's what this boils down to, quality of life. The treatment that was on offer doesn't seem like it would have worked and if it did all of Charlie's other problems would have likely reduced his quality of life. Sometimes as hard as it is, you have to let somebody go. Given the genetic condition Charlie has, his parents choices were limited from the start.

The Family Courts do need to be opened up a bit more. But there will be cases where secrecy is a desirable outcome for all concerned - Parents at loggerheads over treatment.

If you are an adult (as long as you are deemed mentally fit to make these type of decisions) then yes you should be able to make that choice. Where Children are concerned it has to be judged on the evidence and nothing else.

Cliff

Yes, I do disagree with the law. I don't blame the doctors for their expert medical advice- but it wasn't just advice, as it was enforced by the courts.
I do say that. What the doctors wanted to do, i.e. turn off the life support, is going to happen. That is quite evident.

The parents had a minimal say. In fact at some of the meetings they were excluded. The decision of life or death was handed to someone else - a judge.

I contend the courts had no moral right to make that particular judgement. Even if it was the correct one.  It should not be a court case. The parents should not have to fight this in court, as though they are some unconnected 3rd party. They weren't even given legal support to fight their corner!
Although that was corrected, the state treated the parents as rather an irrelevance and took all the decisions away from them.
Just plain wrong in my view.