It's the mismatch between the pretty serious side effects and risks, and the apparently unverified benefits that puzzles me. Any treatment with such serious effects would surely only be embarked on or recommended when there were very, very clear benefits...or very very clear risks to not doing anything.
It seems like doctors are abusing the protocols for "experimental treatments" to administer these treatments that wouldn't sustain the weight of scrutiny of a proper trial or even get ethics board approval for a trial.
Is there any way that we could campaign to close what seems to be a medical ethics loophole? Very handwavey question I know, this is not my field and I have no idea how it's regulated.