If you start reading about what it’s like to work someplace where the patients are on ventilators and all the things they do to keep the patients from diconnecting themselves you begin to get a sense of how awful it must be for the so-called “loved one.”

Maybe they could license the Sting song “If you love someone set them free” for a public health message.

I do not want our country adopting a UK NIH like stance that once a patient engages in non covered care, all care is denied. I want a system that enables a [financially] capable patient of purchasing whatever “appropriate” care is desired. On the other hand I believe our duty as a physicain is to inform them openly and honestly of the likely futility of such care, anything else would IMHO be malpractice.

Insurance policies should have different rate tiers that address the policies coverage for various EOL senarios and when the proverbial [financial] plug is pulled. Once that theshold is passed, the patient/estate would become responsible for payments, and have to pony up some collateral to continue such care.

This would obviously require some overhaul of Medicare but hey it needs overhaul anyway.

I feel the ultimate decision should be that of the patient, who
should bear the responsibility for payment of such care. If grandma or granddad wants to bet the house [kids inheritance] prolonging their life [or is it death] who are we to deny them.

On the otherhand if they wish to spend other peoples money then other people should have a say and deny such spending when deemded inappropriate.

The difficulty in determining futility cases is that the bar is usually set pretty high to really determine ‘no positive outcome’ and of course you begin to have all sorts of issues with relative biases towards quality of life.

I think many people are missing the key ingredient in more effective medicine and it has to do with the foundation of all medical decision making and all medical futility cases.

And that is the skill of prognostication. How we as medical professionals estimate/formulate likely medical outcomes plays a huge role in what doctors and patients eventually choose to do. And I am not talking about just how we communicate. No medical school focuses on how to formulate a prognosis, nor do we as a medical system have a method to check if our estimates our correct.

Of course any estimation of accuracy in predicting likely outcomes is open to recall bias, anchoring bias, and many other cognitive biases. I think more than comparative effectiveness research, we need intense research into how doctors and patients categorize risk and benefit and therefore formulate a likely future medical outcome.

(And outcome is not considered to be just life or death, but resolution of infections after antibiotics, or time until independent function after traumatic brain injury)