Charlie Gard: a political decision
In the US, the basic way the healthcare system works is this: you have a contract with your insurance company, where they will pay for any care your doctor(s) determines is medically necessary. (I’m simplifying a lot, but this is the basic idea)
There are, of course, innumerable issues with this. Because the doctor system and the insurance system are separate, you have people getting care without insurance, for example. You also have insurers paying hundreds of thousands of dollars for the latest specialty drug. I’m not going to get into the problems in the US; we know them all too well.
Then there’s the UK. Insurance is the state, and doctors are agents of the state (unless you’re one of the elite few with private coverage). The person determining what care is necessary, and the institution paying for that care, are all working for the same superstructure.
Now, Gard’s doctors may very well have determined that nothing more could be done and he was going to die. Frankly, I don’t think they were very wrong. Here’s the problem with the UK system: the agency for treatment is fundamentally removed from the patient/guardian to the doctor.
But what I think is most profoundly dystopian in the UK system is not the straightforward transfer of agency from patients to doctors, which de facto exists in the US. Rather, the foundation of that — the state intervention and domination of the healthcare system — is what I find stunningly perverse. Instead of the system making decisions based on empirical things like healthcare, it’s instead a political decision system. Therefore, because the doctor is the state in the UK, the state functionally acts as an enforcer for the doctors: “we have determined that nothing more can be done, and therefore you will not be allowed to do anything”.
The state chooses what care to provide based on legalities, policy, and regulation; the US system operates from a much different “treatment for appropriate service” model, which is then paid for by insurance companies who have contracted with the patient (in a government regulated way to maximize what they’re forced to cover).
I just find the whole UK system stunningly perverse because of its political nature, and can’t stop thinking about it today.
