The big court cases overturning decisions made by patients' parents has me thinking about the large volume of small decisions made on behalf patients, many without them ever knowing about it. Ultimately the presiding MD is the one responsible for them, even if they're not trained for it, which I have a big problem with. But who else can make them?
Does anyone have any good experiences of patient-guided treatment, or know of any good reading on the matter? Or is pretty much every decision that a patient makes going to be a bad one?
In radiation oncology, for a given treatment there are basically infinite variations in dose. But I imagine that it's the same with almost any intervention– you can change the dose, or the administration profile, or make tiny variations some of which are more aggressive and some more conservative. We have the benefit of having basically all the time we want to make our decisions with, clearly a different world than the ED.
It's pretty widely accepted that both the treatment responses and the toxicity profiles have a sigmoid response curve. However, when designing our treatments in radiation oncology at least, we treat the toxicity as a step function, where anything less than the X published safe "limit" is perfectly fine, and anything more than X is pretty much verboten. X might change institution to institution, or physician to physician, but could it possibly change patient to patient, depending on what their goals and desires are?
Is it even possible to inform the patients well enough to have meaningful input here? It's pretty well known that everybody (patients and clinicians included) sucks at statistics, so even if we knew the correct risk numbers to tell people is that good enough? It feels so paternalistic to take that involvement away but can you responsibly assess say, "how important is your lower leg function versus local control of this tumor?"
If we could do it, aside from the advantage of actually designing our treatment approaches to the patients' desires, it would give us so much more data to pin down the actual risk levels.
TL;DR: Are we stuck with a shrug and the marginal choice of A over B until the AI overlords take over?
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