And sometimes that advocacy is harmful, desperate, arrogant flailing—against the reality one knows is true with overwhelming likelihood—manifesting as "advocacy" or "will" that destroys so many chances for fully experiencing the reality of the precious, remaining, time one has (or one has with one's partner).

NOTE: This is not me disagreeing at all, just your point moved me to make the obvious counterpoint, having been through all this myself very literally and very recently. I know firsthand how important the advocacy is, but also how often it causes nothing but harm. There is a real tricky balance between agency vs acceptance when you've truly lost control of things, like in these cases.

Sure, and we probably all agree that these are personal decisions. If the OP wants to dedicate his life to working on this particular problem, great. Maybe he makes a meaningful contribution. Maybe he just helps his partner make better informed medical decisions. Even if you plan to follow standard of care, doctors often present choices that balance risk vs result.

Also, doctors split their time among patients and their various diseases. You, on the other hand, can focus your study on your disease. If you have a scientific mind, you can become an expert with enough study.