7 ms·

This is obviously a very personal topic, but I can't help but ask whether medecine benefits from people undergoing "futile care"? Are some diseases only treatab

by latch 15y ago

This is obviously a very personal topic, but I can't help but ask whether medecine benefits from people undergoing "futile care"? Are some diseases only treatable today because 20 years ago someone went through all the crap? The whole thing reminds me of the average mid-90s movie Phenomenon. I could always understand Travolta's character's reasoning, but I still thought it was selfish.

Cass 15y ago
Medical research benefits hugely from terminally ill patients who are willing to try anything for even two more months of painful life. There are a lot of of experimental, highly dangerous cancer treatments that could never be justified if not for the fact that even without them, the patient would have about two months to live. That said, there will always be enough patients who want to fight for their life no matter the cost (see other comments on this page for evidence) that if you'd prefer to die in peace, you certainly shouldn't feel obliged to play the guinea pig for science.
DanBC 15y ago
Science doesn't work like that. To get meaningful results you need a large sample size, with a control group, with patients not knowing whether they're getting the new medicine or the old medicine[1] and with doctors not knowing either. Then you need to write that up and analyse it. Many patients are happy to take part in such trials, but it's hard to get ethics panel approval. [1] you tend to test against current best treatment, not placebo, because almost anything works better than nothing and by the time you test the treatment in humans you need to know if this is better than what you're already doing. Ethics panels have some weird effects - (http://www.badscience.net/2011/03/when-ethics-committees-kill/ http://www.badscience.net/2011/03/when-ethics-committees-kil...)
- Cass 15y ago
  That's how it works in the best case. Unfortunately, medical research is not a perfect science. Realistically, with many medical treatments, you can't have a double-blinded study. With chemotherapy, the side effects will often quickly tell you what treatment you're receiving, and a treatment like for example extracorporeal photopheresis can't ethically be placebo-controlled or double-blinded at all. What are you going to do, hook half your patients up to a machine that will do nothing but run their blood around a bunch of tubes for hours for no reason? And you can't get a "large sample size" of patients with rare cancers or diseases by definition. Sometimes, the best you can do is a case study of ten patients who agreed to try your treatment because the other option was death. Quite a few medical advances have been made that way, actually.
- vacri 15y ago
  Science is rigorous, repeatable observation. Double-blind studies and null hypotheses are excellent ways to achieve this. But case studies and low n studies are also informative - and are science. That science can only be control groups and null hypotheses is a myth. Try and tell the medical fraternity that case studies should be eliminated because they hold no meaningful result and you'll be laughed out of the room.
  - DanBC 15y ago
    Case studies are lousy because they are not rigorous, and often have not had any meaningful result. See also knee arthroscopy for patients with osteo arthritis - many of these surgeries were performed before a trial with a control group was possible. That trial found that people who got the sham surgery did as well as the people who got the real surgery. Case studies are lousy, often harmful, medicine.
    - vacri 15y ago
      The thing is that you read case studies with this caveat in mind, recognising that they're statistically flawed. When you don't have better information available, case studies and low n studies give some direction, some previously observed information.
vesrin 15y ago
I think there are examples of what you're saying. I remember reading in "The Emperor Of All Maladies", by Siddharta Mukherjee, about experimental chemotherapy treatments that initially only extended the patient's life by 6-12 months. Later, as science advanced, combining these with new therapies greatly increased the survival rate. But in the end, it is an individual choice. There will always be some who choose to fight no matter what (and they should be aware of their chances) and there will be others who prefer to let go.

by latch 15y ago

Cass 15y ago

Medical research benefits hugely from terminally ill patients who are willing to try anything for even two more months of painful life. There are a lot of of experimental, highly dangerous cancer treatments that could never be justified if not for the fact that even without them, the patient would have about two months to live. That said, there will always be enough patients who want to fight for their life no matter the cost (see other comments on this page for evidence) that if you'd prefer to die in peace, you certainly shouldn't feel obliged to play the guinea pig for science.

DanBC 15y ago

Science doesn't work like that. To get meaningful results you need a large sample size, with a control group, with patients not knowing whether they're getting the new medicine or the old medicine[1] and with doctors not knowing either. Then you need to write that up and analyse it. Many patients are happy to take part in such trials, but it's hard to get ethics panel approval. [1] you tend to test against current best treatment, not placebo, because almost anything works better than nothing and by the time you test the treatment in humans you need to know if this is better than what you're already doing. Ethics panels have some weird effects - (http://www.badscience.net/2011/03/when-ethics-committees-kill/ http://www.badscience.net/2011/03/when-ethics-committees-kil...)

Cass 15y ago
That's how it works in the best case. Unfortunately, medical research is not a perfect science. Realistically, with many medical treatments, you can't have a double-blinded study. With chemotherapy, the side effects will often quickly tell you what treatment you're receiving, and a treatment like for example extracorporeal photopheresis can't ethically be placebo-controlled or double-blinded at all. What are you going to do, hook half your patients up to a machine that will do nothing but run their blood around a bunch of tubes for hours for no reason? And you can't get a "large sample size" of patients with rare cancers or diseases by definition. Sometimes, the best you can do is a case study of ten patients who agreed to try your treatment because the other option was death. Quite a few medical advances have been made that way, actually.
vacri 15y ago
Science is rigorous, repeatable observation. Double-blind studies and null hypotheses are excellent ways to achieve this. But case studies and low n studies are also informative - and are science. That science can only be control groups and null hypotheses is a myth. Try and tell the medical fraternity that case studies should be eliminated because they hold no meaningful result and you'll be laughed out of the room.
- DanBC 15y ago
  Case studies are lousy because they are not rigorous, and often have not had any meaningful result. See also knee arthroscopy for patients with osteo arthritis - many of these surgeries were performed before a trial with a control group was possible. That trial found that people who got the sham surgery did as well as the people who got the real surgery. Case studies are lousy, often harmful, medicine.
  - vacri 15y ago
    The thing is that you read case studies with this caveat in mind, recognising that they're statistically flawed. When you don't have better information available, case studies and low n studies give some direction, some previously observed information.

vesrin 15y ago

I think there are examples of what you're saying. I remember reading in "The Emperor Of All Maladies", by Siddharta Mukherjee, about experimental chemotherapy treatments that initially only extended the patient's life by 6-12 months. Later, as science advanced, combining these with new therapies greatly increased the survival rate. But in the end, it is an individual choice. There will always be some who choose to fight no matter what (and they should be aware of their chances) and there will be others who prefer to let go.