But my point isn’t so much about willingness to pay for such a treatment, but ability to pay for such a treatment.

My understanding is that some treatments like this are sometimes not covered by insurance, so only high income individuals are able to afford them.

On the other hand, long-term care often is covered by insurance, and the insurance is more affordable.

There is plenty of data that shows that people are bad judges of their future opinions. “If X happened to me, I wouldn’t want to live anymore” often turns out to not be true.

That makes it questionably whether consent years or even months ago implies consent now.

And yes, that is very problematic in cases such as Alzheimer’s where people cannot consent now.

I'd say that depends on how effective something is. If a treatment makes significant changes to most of the patients, you can have sufficient effectiveness proof before you're halfway done with the phase 1 safety trial.

Or scam artists putting sawdust from a "special tree" into a bottle, and saying it cured his aunt, so it will cure you! If you look at the history of such things, it's just a constant battle against people being fleeced out of money.

Con artists (and some of these wear lab coats and are quite professional in appearance and speak) know that desperation means easy prey. It's disgusting, but there it is.

And it wasn't just a little problem. It was a huge problem. If the legal framework we have in place was torn down, you'd see all that re-emerge in a second.

I agree that there should indeed be a way to balance snail oil salesman techniques, with the choice of someone in a dire circumstance. I did once read that there are FDA approved methods to get in on early stage/pre-clinical trials. These are targeted for people with severe conditions. People aren't being heartless here.

But at the same time, loved ones will litigate to get money back from scam artists. This also includes going after doctors or facilities or anyone willing to enable such actions. And if treatments go sideways, and no one validated that it was anything more than made up gibberish? The lawsuits will fly then, too. The cops may follow.

And it should be this way

Truth is, you are free to imbibe and consume anything you want. No one can really stop you. And whatever method is being used here, I'm sure you could replicate it, buy the hardware, and so on. You are free to do this.

It's just that no one wants to help.

So you are free.