7 ms·

Bacteria on the Brain

156 points by pella 11y ago

grimmdude 11y ago
tldr?
rogermugs 11y ago
tl;dr?
ajmurmann 11y ago
I honestly don't understand the reason why it's so hard to try to help terminally ill patients with unproven methods as long as everyone agrees that there is no other, better way to help and as long as the patient wants it. Prohibiting this seems like a lose/lose decision to me.
- athenot 11y ago
  Many risky and unproven treatments are first trialed in these cases. The artificial heart is one example. http://www.reuters.com/article/2015/10/14/us-carmat-patient-idUSKCN0S82GP20151014 http://www.reuters.com/article/2015/10/14/us-carmat-patient-...
- atrandom 11y ago
  The problem is that the treatment can make the situation worse, like in the case of the woman who survived for a year with the infection. It can be argued that a quicker death would have been better in her case.
  - ajmurmann 11y ago
    I agree that a quicker death would have been better. However that's often times the case add yet most states don't even site patients to choose between suffering and death. The patient suffered so much because the treatment worked, but not well enough to safe her. That however can happen with many well proven treatments as well. I have a relative who just got a port to feed her liquids, dive she cannot swallow anymore. That treatment will extend her life longer, but she well probably will just suffer longer and die soon anyways. This seems to be a constant trade off in health care these days and usually we decide blindly in favor of extending life regardless of the quality. How we judge experimental treatments seems completely different though.
    - niels_olson 11y ago
      > the treatment worked, but not well enough Well, the prognosis is 14 months, so if she lived a year, maybe it didn't work?
- DanBC 11y ago
  Because some doctors are fucking arseholes who have no problem exploiting dying people so they can make a quick buck.
  - DanBC 11y ago
    This is being downvoted, but you only have to look at the quacks selling (just one example, there are many more) mega-vitamin "cures" for cancer to see that some doctors are indeed fucking arseholes who have no problem exploiting dying people so they can make a quick buck.
- georgeglue1 11y ago
  Doctors have egos and incentives that could lead to terrible patient outcomes. For many terminal cases, there are still well optimized/studied systems and procedures to prolong and improve quality of life. Unless a patient doesn't qualify for any of those, the doctor is taking a risk on bad odds, a risk most patients can't fully understand.
  - Vomzor 11y ago
    What's the risk for terminal cases? Dying sooner? I'm honestly asking, not trying to be snark.
    - univalent 11y ago
      Prolonging someone's suffering? Giving their family false hope? Illegally test a technique/method or drug just to see if it works for someone else benefit? If the patient's best interests are no longer the primary concern all kinds of shady things become possible.
    - refurb 11y ago
      Dying sooner, living the same amount of time with horrible pain or disabilities due to the treatment, increased suffering.
    - shimon 11y ago
      Dying sooner, degraded quality of life, and costs associated with treatment/management. It's complicated because the costs are borne by a number of different parties: the patient herself, her family, the insurer (private or government). For example, a patient could live longer but develop disabilities that require extreme measures in terms of treatment and family care, and cost a lot of money. The risks of all these are going to be unknown in very novel approaches, and people with different values are going to vary in their preference. Understanding those risks and developing guidelines on when to pay for what are one activity of the FDA and major payors like Medicare. A patient and family facing a decision about the value to them in a time of crisis is going to be a lot less informed than those agencies, and it will be a lot easier for a doctor to mislead them (intentionally or not, but doctors aren't immune from over-optimism that their clever ideas might work). At the same time, it does seem like there should be some protocol where a terminally-ill person can be considered sufficiently informed to take the risk. This is hard, because the risks accrue to individual parties (e.g. the university getting sued in this article) whereas the benefits are diffuse (medicine learns whether induced brain infections improve survival in glioblastoma patients). But without this protocol, we are always going to have stories of patients whose treatments and deaths could be teaching us life-saving lessons if only we could legally do what they want to do.
- robotresearcher 11y ago
  It's a very long tradition, with well-trodden philosophical background: "Primum non nicer" (first, do no harm). https://en.wikipedia.org/wiki/Primum_non_nocere https://en.wikipedia.org/wiki/Primum_non_nocere Given the consequences of mistakes, a conservative approach has been considered the best. "It was nature killed her, not me" being easier to stomach than "oops".
  - will_pseudonym 11y ago
    Except "do no harm" is woefully inadequate because it fails to take into account opportunity cost. They are doing TONS of harm by failing to allow willing people to try new medicine and advance science and the human race, all because they have some warped sense of morality that's got horse blinders on.
    - robotresearcher 11y ago
      They are absolutely not ignoring opportunity cost. This issue has been discussed very carefully by sophisticated people for thousands of years. The current system does allow for experimentation, but provides a conservative framework for it. It's huge personal hubris to announce that you know better and they haven't thought it through. Which is one of the things the approach is aimed to protect us from.
      - will_pseudonym 11y ago
        I won't debate you on whether I am correct. I will only state that science is (by definition) advanced ONLY by people over time who knew better, held up by everyone else hadn't thought it through. https://en.wikipedia.org/wiki/Timeline_of_peptic_ulcer_disease_and_Helicobacter_pylori https://en.wikipedia.org/wiki/Timeline_of_peptic_ulcer_disea... June 12: Marshall intentionally consumes H. pylori and becomes ill. He takes antibiotics and is relieved of his symptoms. That's personal hubris! :)
        jeremyjh 11y ago
- senekerim 11y ago
  One reason is that people's innate probability engine is broken, so they can't correctly figure out what's best for them (in expectation). This applies both to individuals and to civilization as a whole.
- bonestamp2 11y ago
  They shouldn't prevent it, but there should be some rules in place to ensure the procedures, practices, treatments and results are well documented so others can benefit from the trials. Also, there should probably be some rules around peer review prior to starting a procedure that would include reviewing past procedures.
amedstudent 11y ago
Well this was a good read. Pretty long and dense for the tech focused audience here I would guess. And to address the top comment, reason people don't like doing this is you get sued when it goes wrong just like in this case. It's safer for yourself to just stick to the protocol ...
- ajmurmann 11y ago
  I understand that that's a reason why it's not done. However, my question was about why their legal system is like it is.
  - niels_olson 11y ago
    There are some good training modules on citiprogram.org. Just plug in your institution and select the Key Research Personnel module. You will be beaten over the head with the numerous historical events that have driven us to this point. Tuskegee is but one of the many, many examples.
niels_olson 11y ago
Thanks for this, I'm drafting an amendment to my IRB protocol right now. Made me re-read the whole thing. Cricky...
andy_ppp 11y ago
I think this article could have gotten to the point more quickly. Was it that bacteria on the brain can cure cancer and also ruin you life? It then went on to talk about a reverse engineered virus that was also tried in some completely unrelated study. The article seemed to have no structure and make no point. The doctor seems to have done some very unethical things here but it is treated as if it was the right thing to do? Maybe it's just the woolly language...
- DanBC 11y ago
  A doctor who made some important discoveries had an idea about using infection to treat cancer. He didn't bother with the proper process, he just went and did it on three patients. 2 of them died about as quickly as they would have anyway. We don't know if they were in more pain or not. 1 of them lived for about a year, and that person's relative described that year as very low quality of life. It's possible that the treatment kept this person alive, in this awful condition, much longer than she would have lived without the treatment. He did this because he thought he was doing the right thing. It's clear to most people that he wasn't doing the right thing, and after he was discovered all the investigators were very clear that he'd done the wrong thing. That story is contrasted with a team who did the right thing: they noticed a plausible mechanism of action; they gathered evidence; they got permissions; they did animal studies. I don't mind the length of the article, but I agree that it wandered around a bit.
- porejide 11y ago
  In my reading there were three parts of the article: Part I: Optimism. Is this a new curative treatment for a cancer with an extremely poor prognosis? We get to see Muizelaar's perspective on why he (presumably) thought he was doing the right thing. Part II: The Fall. Deaths, lawsuits, the expose, resignations. Part III: Resolution. Maybe there is some value in an alternative approach that focuses on mechanism and iterates towards human trials via animal studies. But also, maybe there is something to be said about Muizelaar's approach that our current medicolegal system isn't equipped to handle. To me, the structure of the article helped to underscore that Muizelaar might have been right, which is key for using this article as a way to learn about science and rationality as opposed to solely for its object-level information. Just listing the facts almost certainly would not have been as useful for getting that point across.

156 points by pella 11y ago

grimmdude 11y ago

tldr?

rogermugs 11y ago

tl;dr?

ajmurmann 11y ago

I honestly don't understand the reason why it's so hard to try to help terminally ill patients with unproven methods as long as everyone agrees that there is no other, better way to help and as long as the patient wants it. Prohibiting this seems like a lose/lose decision to me.

athenot 11y ago
Many risky and unproven treatments are first trialed in these cases. The artificial heart is one example. http://www.reuters.com/article/2015/10/14/us-carmat-patient-idUSKCN0S82GP20151014 http://www.reuters.com/article/2015/10/14/us-carmat-patient-...
atrandom 11y ago
The problem is that the treatment can make the situation worse, like in the case of the woman who survived for a year with the infection. It can be argued that a quicker death would have been better in her case.
- ajmurmann 11y ago
  I agree that a quicker death would have been better. However that's often times the case add yet most states don't even site patients to choose between suffering and death. The patient suffered so much because the treatment worked, but not well enough to safe her. That however can happen with many well proven treatments as well. I have a relative who just got a port to feed her liquids, dive she cannot swallow anymore. That treatment will extend her life longer, but she well probably will just suffer longer and die soon anyways. This seems to be a constant trade off in health care these days and usually we decide blindly in favor of extending life regardless of the quality. How we judge experimental treatments seems completely different though.
  - niels_olson 11y ago
    > the treatment worked, but not well enough Well, the prognosis is 14 months, so if she lived a year, maybe it didn't work?
DanBC 11y ago
Because some doctors are fucking arseholes who have no problem exploiting dying people so they can make a quick buck.
- DanBC 11y ago
  This is being downvoted, but you only have to look at the quacks selling (just one example, there are many more) mega-vitamin "cures" for cancer to see that some doctors are indeed fucking arseholes who have no problem exploiting dying people so they can make a quick buck.
georgeglue1 11y ago
Doctors have egos and incentives that could lead to terrible patient outcomes. For many terminal cases, there are still well optimized/studied systems and procedures to prolong and improve quality of life. Unless a patient doesn't qualify for any of those, the doctor is taking a risk on bad odds, a risk most patients can't fully understand.
- Vomzor 11y ago
  What's the risk for terminal cases? Dying sooner? I'm honestly asking, not trying to be snark.
  - univalent 11y ago
    Prolonging someone's suffering? Giving their family false hope? Illegally test a technique/method or drug just to see if it works for someone else benefit? If the patient's best interests are no longer the primary concern all kinds of shady things become possible.
  - refurb 11y ago
    Dying sooner, living the same amount of time with horrible pain or disabilities due to the treatment, increased suffering.
  - shimon 11y ago
    Dying sooner, degraded quality of life, and costs associated with treatment/management. It's complicated because the costs are borne by a number of different parties: the patient herself, her family, the insurer (private or government). For example, a patient could live longer but develop disabilities that require extreme measures in terms of treatment and family care, and cost a lot of money. The risks of all these are going to be unknown in very novel approaches, and people with different values are going to vary in their preference. Understanding those risks and developing guidelines on when to pay for what are one activity of the FDA and major payors like Medicare. A patient and family facing a decision about the value to them in a time of crisis is going to be a lot less informed than those agencies, and it will be a lot easier for a doctor to mislead them (intentionally or not, but doctors aren't immune from over-optimism that their clever ideas might work). At the same time, it does seem like there should be some protocol where a terminally-ill person can be considered sufficiently informed to take the risk. This is hard, because the risks accrue to individual parties (e.g. the university getting sued in this article) whereas the benefits are diffuse (medicine learns whether induced brain infections improve survival in glioblastoma patients). But without this protocol, we are always going to have stories of patients whose treatments and deaths could be teaching us life-saving lessons if only we could legally do what they want to do.
robotresearcher 11y ago
It's a very long tradition, with well-trodden philosophical background: "Primum non nicer" (first, do no harm). https://en.wikipedia.org/wiki/Primum_non_nocere https://en.wikipedia.org/wiki/Primum_non_nocere Given the consequences of mistakes, a conservative approach has been considered the best. "It was nature killed her, not me" being easier to stomach than "oops".
- will_pseudonym 11y ago
  Except "do no harm" is woefully inadequate because it fails to take into account opportunity cost. They are doing TONS of harm by failing to allow willing people to try new medicine and advance science and the human race, all because they have some warped sense of morality that's got horse blinders on.
  - robotresearcher 11y ago
    They are absolutely not ignoring opportunity cost. This issue has been discussed very carefully by sophisticated people for thousands of years. The current system does allow for experimentation, but provides a conservative framework for it. It's huge personal hubris to announce that you know better and they haven't thought it through. Which is one of the things the approach is aimed to protect us from.
    - will_pseudonym 11y ago
      I won't debate you on whether I am correct. I will only state that science is (by definition) advanced ONLY by people over time who knew better, held up by everyone else hadn't thought it through. https://en.wikipedia.org/wiki/Timeline_of_peptic_ulcer_disease_and_Helicobacter_pylori https://en.wikipedia.org/wiki/Timeline_of_peptic_ulcer_disea... June 12: Marshall intentionally consumes H. pylori and becomes ill. He takes antibiotics and is relieved of his symptoms. That's personal hubris! :)
      - jeremyjh 11y ago
senekerim 11y ago
One reason is that people's innate probability engine is broken, so they can't correctly figure out what's best for them (in expectation). This applies both to individuals and to civilization as a whole.
bonestamp2 11y ago
They shouldn't prevent it, but there should be some rules in place to ensure the procedures, practices, treatments and results are well documented so others can benefit from the trials. Also, there should probably be some rules around peer review prior to starting a procedure that would include reviewing past procedures.

amedstudent 11y ago

Well this was a good read. Pretty long and dense for the tech focused audience here I would guess. And to address the top comment, reason people don't like doing this is you get sued when it goes wrong just like in this case. It's safer for yourself to just stick to the protocol ...

ajmurmann 11y ago
I understand that that's a reason why it's not done. However, my question was about why their legal system is like it is.
- niels_olson 11y ago
  There are some good training modules on citiprogram.org. Just plug in your institution and select the Key Research Personnel module. You will be beaten over the head with the numerous historical events that have driven us to this point. Tuskegee is but one of the many, many examples.

niels_olson 11y ago

Thanks for this, I'm drafting an amendment to my IRB protocol right now. Made me re-read the whole thing. Cricky...

andy_ppp 11y ago

I think this article could have gotten to the point more quickly. Was it that bacteria on the brain can cure cancer and also ruin you life? It then went on to talk about a reverse engineered virus that was also tried in some completely unrelated study. The article seemed to have no structure and make no point. The doctor seems to have done some very unethical things here but it is treated as if it was the right thing to do? Maybe it's just the woolly language...

DanBC 11y ago
A doctor who made some important discoveries had an idea about using infection to treat cancer. He didn't bother with the proper process, he just went and did it on three patients. 2 of them died about as quickly as they would have anyway. We don't know if they were in more pain or not. 1 of them lived for about a year, and that person's relative described that year as very low quality of life. It's possible that the treatment kept this person alive, in this awful condition, much longer than she would have lived without the treatment. He did this because he thought he was doing the right thing. It's clear to most people that he wasn't doing the right thing, and after he was discovered all the investigators were very clear that he'd done the wrong thing. That story is contrasted with a team who did the right thing: they noticed a plausible mechanism of action; they gathered evidence; they got permissions; they did animal studies. I don't mind the length of the article, but I agree that it wandered around a bit.
porejide 11y ago
In my reading there were three parts of the article: Part I: Optimism. Is this a new curative treatment for a cancer with an extremely poor prognosis? We get to see Muizelaar's perspective on why he (presumably) thought he was doing the right thing. Part II: The Fall. Deaths, lawsuits, the expose, resignations. Part III: Resolution. Maybe there is some value in an alternative approach that focuses on mechanism and iterates towards human trials via animal studies. But also, maybe there is something to be said about Muizelaar's approach that our current medicolegal system isn't equipped to handle. To me, the structure of the article helped to underscore that Muizelaar might have been right, which is key for using this article as a way to learn about science and rationality as opposed to solely for its object-level information. Just listing the facts almost certainly would not have been as useful for getting that point across.