Now that we know the truth about this doctor, I just couldn't help going back and commenting on this. Here's what Great Ormand Street said about him:
GOSH said in a statement: ‘On July 13 he (Dr Hirano) 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.
‘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 compounds he proposed prescribing for Charlie."
Don't hold your breath for that Nobel prize.
Who develops a product they don't profit from? That's just ridiculous.
He did view earlier scans. He didn't get to see all the more recent records and was not permitted to examine the patient or view the total medical record until after he came to court and was permitted to do so by the judge. Upon examination, he said the current level of damage was too severe.
So, from what I can gather, the disease cuts off section after section of the brain from the whole. It does not directly cause damage to the sections. The earlier scans showed the cut off sections were not damaged, just cut off. The drug helps to bypass the roadblock so there is a degree of restored functionality, which also helps to bypass future blockages that may occur as the disease progresses. When it goes untreated for too long, then those cut off sections wither and become irreparably damaged. Which is apparently what the later scans show to be the case.
You have a situation here where the hospital told the parents what they thought the proper treatment was. The parents disagreed and sought a different doctor who happens to be top of the field in this condition. The that doctor got access to early records that had been shared with the parents before the hospital's position was fixed. The hospital refused that doctor access to ongoing medical records or to examine the patient. Instead, they went to court to overrule the parents. The first knowledge of the latest brain scans the US doctor saw on his visit were not shared with that parents until the hospital's attorney announced the results in court. That's crazy.
The policy issue is on what basis can a parent's authority over a child be overruled. We all accept situations of abuse/etc where the parent has done something bad, the state has proven it in court, and as a result the parental rights are severed. In that case, a replacement (guardian ad litem) is appointed by the court to act in place of the parents. They decision should still never ever belongs to the hospital.
I understand your position that in this very specific situation you believe it is in the best interests of this particular child to let him die. From the very start I have personally agreed with you on that. I'm glad the parents have finally been able to bring in their own experts and do the work necessary to verify to their satisfaction that this is the right decision. But none of that is the point. The point is whose decision is it and why?
If we allow it to be the policy that where doctors and parents disagree then judges step in and by default of stepping in have overstepped the parent's right to decide, then what happens in other situations when things run amok?
What happens when there are two reasonable opinions and the doctor will not comply with the choice of the parents? What happens when the doctor then refuses to release the patient, refuses to allow others to examine, and refuses to either release ongoing records to parents or inform them in a timely manner of their results? Do you understand how that can get out of control?
What happens when the parents cannot afford their own independent medical experts, much less with superior credentials to the treating physician(s)? In this case you're talking about the best expert in the world and he's not being given the ongoing records or access to the patient necessary to make his own review or update his position as the case develops - because that would not serve the interests of the hospital's legal case.
Do you understand why this is a problem ethically and as a matter of public policy? Why the legal standard should be parental rights (informed consent of the parent, freedom of the parent to remove the child to alternative care, etc) unless and until the state proves the parent has done some bad thing sufficient to remove the child from their custody? Why we shouldn't be asking lawyers and judges to make medical decisions in a competition between medical experts?
On the other end of the spectrum, I mentioned the girl in California where she was declared brain dead and the parents were still able to remove her to a different hospital under the care of different doctors. Even where the state declared her dead, a judge would not grant the hospital authority to remove life support of her body. I think that's going too far, but it's what happened. So, I just ran across an update on that case and thought I'd share:
http://www.startribune.com/family-of-brain-dead-california-girl-fights-to-reverse-death/436367713/Also, my test starts in a few hours, so sorry to drop in and run out again.
