So no medical provider can disconnect life support.
For a patient in a PVS, not over the family's objection. If they are brain dead medical providers can petition the courts over the family's objection. See the Jahi McMath case.
But what happens when insurance won't pay? Does medicaid kick in?
If the family qualified financially for Medicaid then the hospital will help them apply for it. If they are not low income 'enough' then the family is going to pay out-of-pocket. Charlie's case would be unique because he is not a US Citizen. If he were granted Perm Res I think he would be eligible, but it depends on the State of residency. Charlie's parents would still have to meet the financial criteria and assets in the UK would be considered in determining eligibility.
Would they be paying in a case like charlie's where the parents insurance would likely have stopped paying a while back?
If the family met financial criteria, yes. But there are exceptions to payment for experimental treatment and treatments not expected to provide improvement, so some of what he's getting may not be covered. AND they could have insisted that Charlie be moved to a long-term care facility, which is usually less costly. LTCs 'maintain' the patient, they don't try to 'cure' them.
Does insurance/medicaid pay the associated costs of not being able to work? Overnight stays near the hospital? No and no. But facilities usually have a good network of social resources; R McD House, etc.
If not presumably one parent at least would need to keep working to pay the mortgage and those bills. Which, if they have an average income, again means medicaid doesn't cover? Yes, that's pretty much correct. Parents have been known to divorce for financial reasons because of this.
So in reality, if a child is in charlie's situation the parents need to find money from somewhere, and possibly bankrupt themselves in the process.
Medical care is the number one reason for bankruptcy in the US. If DH had not had 'double coverage' when he had cardiomyopathy ($225K hospital + doctors and equipment) we would have lost our home and every penny of our savings. Because he had double coverage we paid very little for his care. I think IIRC we were less than $1000 out of pocket for his care.
So while it is the parents decision, surely the financial pressure on them must be huge, so if medics think withdrawal of treatment is the right path, the financial consideration will weigh heavily into the decision.
I think that would depend on the parents. In Charlie's case I doubt it. In the McMath case, definitely not. For me, it would be quality of life above all, regardless of cost. My DH's double coverage would have paid for him on LS for the rest of his life as there is no 'lifetime cap'. When our children were young they also had 'double coverage'. But I would never, ever keep them or DH on life support in Charlie's situation. Bottom line is, some parents would consider finances, some (most) probably would not.
The gards choice of "keeping charlie alive", must be hugely different to an american parents choice of "keep terminally ill child alive and get into irretrievable debt in the process"
Honestly, I don't know if any parent would consider money before what they believed was the right thing to do. Thank God I never had to make that decision for a child and I pray I never will. My mother, brother, and I made that decision for my dad but he was 86 and was in the final stages of a neurological condition. Mum could have kept him on life support as they tried various procedures to prolong his life, she had the insurance to do it. But she knew that the time had come to let him go. They had lived and loved for over 50 years. It was the final act of her love for him. And it was an easy decision to make. She knows she'll see him again.