"I think it should be illegal to give therapies (and false hope) which are proven to extend agony and proven not to extend overall survival."
I used to agree with you, emphatically. Now I'm not so sure.
I had a bone marrow transplant 30 years ago. At the time, one year mortality was 95%. Let's just say it was hard, both physically and mentally. And the doctors absolutely lied by omission.
I see that look of hopeful desperation in new patients every time I go back for a checkup. No doubt patients (research subjects) are being exploited.
But...
Whereas I was a boy in the bubble, similar treatment today is practically an outpatient therapy.
Like a comment upthread, one of my bffs was diagnosed with terminal cancer, qualified for a clinical trial for immunotherapy, now three years later is "cancer free".
Seeing how far we've progressed, now I think our sacrifices were probably worth it. I'm certainly less angry about it.
In my anecdotal experience, giving patients the brutal facts about experimental cancer treatments doesn't shift their decisions much. Regardless of the exact odds, some people are predisposed to fight long odds with painful treatment, and some are predisposed to stop fighting and optimize quality of life. Both choices are legitimate and it's not worth bending the truth one iota to try and get more research subjects (or to bend it the other way to avoid "false hope").
Most lying in this context is driven by the speaker's (partially unconscious) desire to avoid short-term social tension.
Thanks for sharing your story. BMT is a surgery though, and surgery is always experimental in a sense, and has been improving at a satisfactory rate in general. Drugs are a little different. Great to hear about your friend. A close friend of mine died last year of cancer while enrolled in an immunotherapy trial. He wasn't enrolled until after he'd failed two rounds of conventional treatment, and I wonder if it might have been better to do things in a different order.
Bone marrow transplants are chemotherapy (and maybe radiation treatments) to kill existing bone marrow and then infusion of new cells into the bloodstream. It's not a surgery as such.
I used to agree with you, emphatically. Now I'm not so sure.
I had a bone marrow transplant 30 years ago. At the time, one year mortality was 95%. Let's just say it was hard, both physically and mentally. And the doctors absolutely lied by omission.
I see that look of hopeful desperation in new patients every time I go back for a checkup. No doubt patients (research subjects) are being exploited.
But...
Whereas I was a boy in the bubble, similar treatment today is practically an outpatient therapy.
Like a comment upthread, one of my bffs was diagnosed with terminal cancer, qualified for a clinical trial for immunotherapy, now three years later is "cancer free".
Seeing how far we've progressed, now I think our sacrifices were probably worth it. I'm certainly less angry about it.