Should the Government or the Patient Decide What is Medically Necessary

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Why does that make them free to override the parents’ desire to find care elsewhere?

It sounds like somebody “owned” Alfie and it wasn’t mom and dad.
 
_Ruby said:
Unfortunately I think facts just don’t permeate when people are determined to think Teresa May is hosting a mass UK death panel meeting every Tuesday at 2pm.
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They do seem to get more than a little florid at times but that’s CAF.
 
Alfie is not a dog or an object. No ones owns him.

In the absence of him being able to speak for himself, both arguments were weighed up.

People are blindly jumping on the offer from Italy without even bothering to read actual facts.

Bambino Gesu was supporting the move on the basis of advice given by an Air Ambulance representative. The cross examination of the Air Ambulance representative showed his entire proposed plan was not medically sound and had not even been formed on a full reading of Alfies medical records.

Bambio Gesu also submitted documents that also advised that the move could induce ‘constant seizures’ on route and could risk the brain damage becoming worse.

I have previously posted the transcripts from court outlining both issues, I am happy to repost if you like?

In every single statement from doctors at home and abroad all said it was unlikely Alfie felt pain, but could not be ruled out.

If he did feel pain, think of what his body was being put through. Thinking of that is safeguarding his interests, he is the patient, not his parents.
 
Of course nobody actually owns anybody else. Which is why I put it in quotes.
There were two issues here–whether treatment should have been pursued, and who has the final say in his life.

My own opinion was that hospice care was indicated.

But it’s really scary to sit back and watch custody taken from non-abusive, non-addicted parents who were willing to foot the bill.

This case and Charlie Gard and Terri Schiavo are reasons why there is so much distrust of government and health care…
 
Custody was not taken from the parents, Alfie was never made a ward of the state. His treatment plan was incredibly complex and hugely emotive and needed to be fully thought out with respected medical experts.

Charlie Gard is indeed exactly why European citizens want nothing of the US model. Parents facing their child’s death were offered false hope by an American doctor thinking of nothing else than his own profit. He hadn’t even read the child’s medical notes in full. Medicine at its most disgusting.
 
Kaninchen said:
What had that to do with the Government?
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In Britain they have the National Health Service (NHS) for nearly 70 years. It is more than 98% funded by the general Taxation by the government. The British Government does allow the NHS considerable room to operate without interference from the central government.

In this case, the NHS wanted to stop all treatment - life support and nutrition. The parents objected. The parents had support for a medical transfer to Italy and agreements for the care THEY wanted in Italy. The British Court - a government agency - said NO.

In effect, the parents were told by the government - the NHS and the Court - they were not free to seek help from those willing to help their child.

It is one thing to say, “Sorry we cannot help.” And quite another to say, “And you are barred from getting help from others. Your emotional and religious convictions are subordinate to the decisions of British government agencies.”
 
GratefulFred said:
In this case, the NHS wanted to stop all treatment
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Perhaps it might help if you read the history of the case.

Meanwhile, private medicine is available in the UK, large sums had been crowdfunded, care wasn’t a question of finance.
 
_Ruby said:
His treatment plan was incredibly complex and hugely emotive and needed to be fully thought out with respected medical experts.
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What is clear from both the Gard and Evans cases is that much more thought needs to be given to handling young parents with little in the way of personal resources in tragic situations like this.
 
The question makes no sense if the question of treatment being reasonable is not considered.

Can parents just pick up and leave an ICU with their child in arms, against all medical advice? The child will still die, but one is a controlled death with comfort measures on hand, the other is not. Which death is better for him?
 
Worth noting that the bishops of England and Wales, including the bishop of Liverpool, came out in support of the hospital.

My own opinion is that these parents were taken advantage of and given false hopes by people with an agenda. If they had been left alone this would never have become the media circus that it did.

Again, my opinion is that ultimately since Alfie could not speak for himself, the doctors should decide when to end life support because they understand the medical situation, the prognosis, the likelihood of suffering and aren’t going to let emotions and grief influence the decision. But every effort should be made first to come to a compromise with the parents because their wishes are extremely important.
 
_Ruby said:
Can parents just pick up and leave an ICU with their child in arms, against all medical advice?
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I think I get what you’re driving at.
I don’t know what country you’re in, but in the US there have been times that the courts intervened when the parents didn’t approve of this or that medical treatment and took emergency custody of the child (i.e. Christian scientist parents who were against medical care or JW and blood transfusions).
I feel like this case is different–the parents wanted to try another treatment. Not withdrawing treatment.
Like I said before, my own opinion is that hospice was indicated. But it should be the parents’ decision. The hospital shouldn’t have overstepped the parents .
 
I am in the UK, working in the NHS, providing NHS services and have 2 degrees in public services and healthcare policies.

And in this case, there was no ‘other treatment’. One was palliative care in the UK, the other was more palliative care in Italy (just with the added risk of more brain damage during transit and the un-answerable question of whether Alfie was or was not in pain)
 
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These end of life issues are so emotionally fraught.
I see families who want everything done to keep 100 year old granddad above ground and you totally get their sadness and grief. 🙁
 
It seems to me medically necessary isn’t the issue. What does that even mean? The question should be, who gets to decide what health care treatments a person can have. That answer should be the patient. Whether or not a particular doctor wants to offer a treatment should be left to the individual doctor. Things do get more complicated with children as someone has to make decisions for the child. In Western civilization that has become the government’s decision.
 
In my most humble opinion, this whole thing boils down to the freedom of the individual. If I want to stay alive as long as I can and I have the money to pay and another hospital is willing to take me in, then no one should force me to do the opposite. If I’m in a coma, those who I designated to care for me should have the decision. They have my express wish to do what ever they want. Another one else is intruding on my death wishes.

And if it’s a child, the parents, not the government, have been given command over their child by God. It’s called freedom. Those doctors and government folks who want to make decisions for me, my coma-induced body, or my child can all go jump in a river.

Give me liberty any day of the week.
 
I suppose the other question is do we believe parents are always right or are they just like any other human beings and sometimes fear or high stress leads to irrational thinking or selfishness clouds their decision making?

What would scare me if I had a child and lived under a system where parents always had the final say is the fact that a) I know I am not a perfect person, b) There would be nothing to protect my children if I couldn’t take care of their best interests
 
I hear the arguments on both sides. Personally I do not believe extensive medical training Is needed to make many of these decisions. A degree in treatment of diasease doesn’t preclude the rights of the person being treated, or family on their behalf, from making decisions if they are capable. However in some extreme cases I think it can be warranted for providers to intervene, but I tend think those would be extreme and relatively rare. Patients aren’t perfect, neither are physicians. I tend to think Rights>Titles
 
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I don’t know about enforced by the executive. This is a civil case.
 
This is a side issue, but interesting (at least I think so). I’m not sure where you are from, Scarlett, but I would be surprised if anyone from Britain thought a court was part of the government. It’s one of the organs of the state, of course, but certainly not, in my view, part of the government.

Strangely, in view of the often asserted theory that the United States takes the separation of powers more seriously than the United Kingdom, this is not the case in the matter of the judiciary. The British judiciary acts quite separately from the government, and has not succumbed to that politicisation that, in British eyes, so disfigures the American system.
 
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