4 ms·

I’d wager that the numbers in cancer treatment alone are much higher than that. From my personal experience as an advocate for a patient, most doctors seem to

by jcims 5y ago

I’d wager that the numbers in cancer treatment alone are much higher than that. From my personal experience as an advocate for a patient, most doctors seem to be scared to death to get off the ‘standard of care’ rails and *definitely* aren’t comfortable suggesting an alternate treatment plan once the primary doctor has started one. Basically if someone gets a terminal illness and doesn’t seek medical attention, then the disease is blamed for their death. If that same person does seek medical attention and dies anyway, it’s still the disease that killed them as long as the doc followed the FDAs runbook. BUT if the doc tried anything new and the patient dies, well then obviously the doc killed them and they should lose their license and die bankrupt. Clearly just letting docs go cowboy isn’t likely to have great outcomes either, but something in the middle may.

Retric 5y ago
Saying the runbook isn’t perfect is not a specific treatment plan. The rules are very loose for studies on terminal people, but allowing random treatments without being part of a study has minimal utility. Something might prolong someone’s life but you have no way to verify and cancer treatment very often kills people before the cancer.
- jcims 5y ago
  >Saying the runbook isn’t perfect is not a specific treatment plan. Of course, that's the point I'm trying to make. Doctors have very limited opportunity to replace the runbook with a specific treatment plan because, at least based on my limited observation, they are not allowed to create specific treatment plans without the runbook. >The rules are very loose for studies on terminal people, The patient I was working with was terminal and the only rule that was loose seemed to be the ability to abandon a treatment plan early when it stopped showing promise. >but allowing random treatments without being part of a study has minimal utility. Something might prolong someone’s life but you have no way to verify and cancer treatment very often kills people before the cancer. Minimal utility to medicine maybe, but not to the individual. If a person invests hundreds or thousands of hours investigating adjuvant therapies, reviewing trial outcomes and talking to PI, researchers, clinicians and trial coordinators, I'm of the opinion their primary oncologist should at least entertain a suggestion, not just dismiss the conversation with 'that's not standard of care'. Anyway, I'm not going to change anything here on HN. Thanks for your time.
  - Retric 5y ago
    As a one off, a person willing to jump through those hoops can also shop around for a doctor willing to go off label etc. When I say minimal utility I mean chances are they die sooner and or suffer significantly more.

by jcims 5y ago

Retric 5y ago

Saying the runbook isn’t perfect is not a specific treatment plan. The rules are very loose for studies on terminal people, but allowing random treatments without being part of a study has minimal utility. Something might prolong someone’s life but you have no way to verify and cancer treatment very often kills people before the cancer.

jcims 5y ago
>Saying the runbook isn’t perfect is not a specific treatment plan. Of course, that's the point I'm trying to make. Doctors have very limited opportunity to replace the runbook with a specific treatment plan because, at least based on my limited observation, they are not allowed to create specific treatment plans without the runbook. >The rules are very loose for studies on terminal people, The patient I was working with was terminal and the only rule that was loose seemed to be the ability to abandon a treatment plan early when it stopped showing promise. >but allowing random treatments without being part of a study has minimal utility. Something might prolong someone’s life but you have no way to verify and cancer treatment very often kills people before the cancer. Minimal utility to medicine maybe, but not to the individual. If a person invests hundreds or thousands of hours investigating adjuvant therapies, reviewing trial outcomes and talking to PI, researchers, clinicians and trial coordinators, I'm of the opinion their primary oncologist should at least entertain a suggestion, not just dismiss the conversation with 'that's not standard of care'. Anyway, I'm not going to change anything here on HN. Thanks for your time.
- Retric 5y ago
  As a one off, a person willing to jump through those hoops can also shop around for a doctor willing to go off label etc. When I say minimal utility I mean chances are they die sooner and or suffer significantly more.