6 ms·

What are the ethics of trying this in terminal patients? Surely I’d give it punt and hope for the best should I ever have brain cancer and if not we’d all lear

What are the ethics of trying this in terminal patients? Surely I’d give it punt and hope for the best should I ever have brain cancer and if not we’d all learn something right? Why is it that we don’t treat terminally ill patients the same way we treat DOA car accident victims and aim to give them the opportunity to contribute?

ericpgreen 9y ago
And sometimes you get extremely lucky and a Phase 1 trial of a modified poliovirus injected into your brain tumor---a trial only designed to determine safety and toxicity---kicks ass and saves your life. https://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/ https://www.cbsnews.com/news/polio-cancer-treatment-duke-uni... http://www.dukechronicle.com/article/2016/05/poliovirus-cancer-treatment-by-duke-researchers-receives-breakthrough-status-from-fda http://www.dukechronicle.com/article/2016/05/poliovirus-canc...
austinjp 9y ago
As has been pointed out, this does happen. But consider the ethical minefield. It would be very easy for an unethical or poorly governed organisation to fleece these patients. Willingness to try anything no matter the expense, plus slim chance of success, is a terrible equation. Even with stringent controls in place, there are plenty of examples where med/research companies skirt extremely close to the limits of ethical or exploitative behaviour. "Might as well try it though"? Well, how about horrible side effects, a life that's longer but more painful and increasingly less dignified? Your last few months in a hospital far from family, vs your last weeks at home? These are not straightforward issues. Finally, consider that some terminally ill people simply don't want any more treatment. They're done with it all, and that's fine. This is a limiting factor in recruitment for trials for such situations. I'm not denying your suggestion -- although these are conscious people with volition, which perhaps doesn't come across in your question. I'm just pointing out that ethics are very, very hard.
chipperyman573 9y ago
>Why is it that we don’t treat terminally ill patients the same way we treat DOA car accident victims and aim to give them the opportunity to contribute? Cancer patients aren't unconscious and braindead. I agree with what you're saying but this is the argument used by medical boards.
- deleted 9y ago
  [deleted]
nck4222 9y ago
We do allow terminally ill patients to take part in unproven/experimental treatments that haven't been approved for general use. Here's a recent example of a bill passing to allow this, but it's been allowed in various forms before this: https://www.washingtonpost.com/news/to-your-health/wp/2017/08/03/senate-passes-right-to-try-bill-to-help-terminally-ill-patients-get-experimental-drugs/?utm_term=.e3ede86ec174 https://www.washingtonpost.com/news/to-your-health/wp/2017/0...
- Houshalter 9y ago
  Right to try laws are pretty recent, and they don't completely fix the problem. Not all states have them yet either.
  - dekhn 9y ago
    Even before right to try laws, terminally ill patients were the preferred clinical trial subject. It's much easier to justify putting a risky chemical into a person who's about to die. Unfortunately, this biases the statistics you get, making it less clear whether the treatment would be helpful in less terminal popuations.
klipt 9y ago
The thing you're talking about exists, they're called clinical trials: https://clinicaltrials.gov/ https://clinicaltrials.gov/ You don't even have to be terminally ill to sign up, there are clinical trials for treatments for non-terminal conditions too.
- nsxwolf 9y ago
  But what if you don't want to take the chance that you'll be in the placebo group?
  - vkou 9y ago
    Then you're guaranteed to die. Placebo trials are done to benefit the many.
  - klipt 9y ago
    1) The control arm of the trial is seldom a placebo, it's more likely to be the current standard of care (i.e. best possible already FDA approved treatment) 2) Not all clinical trials have a control arm. It depends on the phase of the trial among other things.
  - deleted 9y ago
    [deleted]
TCM 9y ago
What about errors or changes in your diagnosis? John Bain (game review youtuber) was diagnosed with Cancer and in 2015 his cancer was determined to be uncurable. But, his diagnosis changed and now he is in remission again. See https://en.wikipedia.org/wiki/TotalBiscuit https://en.wikipedia.org/wiki/TotalBiscuit
- Ralfp 9y ago
  This isn't entirely true (not is Wikipedia accurate in its story of his illness). TB is participating on clinical trials for effectiveness of Panitumumab in stage 4 colon cancer patients, its this drug that produced remission in his illness. Original diagnosis was not wrong.
- dv_dt 9y ago
  I would think that part of an ethical protocol for testing would include a frank discussion with each patient about the probabilities of various outcomes and trading off actions in that landscape.
tpallarino 9y ago
If there is a consenting adult who wants to do it, why not? As long as they understand the risks and that success is incredibly unlikely.
rscho 9y ago
Because cancer patients, at the difference of car accident victims, are legally fully capable of consent. In addition, many people will try anything to live longer. Some patients are genuinely willing to contribute as research subjects in the hope of helping others, and this is a good reason to participate. What many people embarking on studies for new treatments do not realize, is that studies are not designed to benefit them personally (random assignation to placebo group, etc.). It is a common perception that people embarking on a clinical trial hoping for a miraculous cure have the wrong attitude, as there is little chance that you will be cured, and it will be a collateral effect even if it does happen. PS: the above is a widely accepted opinion in current medical ethics.
- Aaargh20318 9y ago
  But why does it have to be research only ? Why not just make the treatment available, even if it's not proven yet ? If someone is terminal anyway, then what do they have to lose ?
  - QAPereo 9y ago
    What time they have left, and then introduction of needless agony.
    - Aaargh20318 9y ago
      I'd gladly gamble a few weeks of my life for the chance to gain decades.
      - QAPereo 9y ago
        Very few people with terminal illnesses ever face those odds, you're usually trading months for years, or more months.
      - rscho 9y ago
        In the past week, I have taken care of 2 patients with multimetastatic cancer. Their history is that basically, they suffered pretty much all complications you could think of from their treatment (surgery and chemo). The US healthcare system went to extreme lengths to ensure that those people are "not let down". Their situation now is that they are dependent on family, breathe through a tracheostomy, are blind, unable to move normally due to shortness of breath and neuropathy, and generally have a dismal quality of life. They still come to the clinic once in a while to have the most recent body part affected by metastasis removed. Yet, those people are not on clinical trials because it is felt (not by me mind, but not my call...) that there are still things to be done with presently known treatment methods. All that to say, try to walk in a terminal patient's shoes for a bit, and perhaps you'll discover that the cost of increasing lifetime can be higher than you are willing to pay. Plus, we don't have the manufacturing and logistic capabilities to provide every possible experimental treatment to everyone. Finally, you should realize that a lot of people have financial, academic, or even political interests to incentivize participation in clinical trials. It is precisely to avoid that, that patients must be informed that trials are not designed for one's personal benefit.

ericpgreen 9y ago

And sometimes you get extremely lucky and a Phase 1 trial of a modified poliovirus injected into your brain tumor---a trial only designed to determine safety and toxicity---kicks ass and saves your life. https://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/ https://www.cbsnews.com/news/polio-cancer-treatment-duke-uni... http://www.dukechronicle.com/article/2016/05/poliovirus-cancer-treatment-by-duke-researchers-receives-breakthrough-status-from-fda http://www.dukechronicle.com/article/2016/05/poliovirus-canc...

austinjp 9y ago

As has been pointed out, this does happen. But consider the ethical minefield. It would be very easy for an unethical or poorly governed organisation to fleece these patients. Willingness to try anything no matter the expense, plus slim chance of success, is a terrible equation. Even with stringent controls in place, there are plenty of examples where med/research companies skirt extremely close to the limits of ethical or exploitative behaviour. "Might as well try it though"? Well, how about horrible side effects, a life that's longer but more painful and increasingly less dignified? Your last few months in a hospital far from family, vs your last weeks at home? These are not straightforward issues. Finally, consider that some terminally ill people simply don't want any more treatment. They're done with it all, and that's fine. This is a limiting factor in recruitment for trials for such situations. I'm not denying your suggestion -- although these are conscious people with volition, which perhaps doesn't come across in your question. I'm just pointing out that ethics are very, very hard.

chipperyman573 9y ago

>Why is it that we don’t treat terminally ill patients the same way we treat DOA car accident victims and aim to give them the opportunity to contribute? Cancer patients aren't unconscious and braindead. I agree with what you're saying but this is the argument used by medical boards.

deleted 9y ago
[deleted]

nck4222 9y ago

We do allow terminally ill patients to take part in unproven/experimental treatments that haven't been approved for general use. Here's a recent example of a bill passing to allow this, but it's been allowed in various forms before this: https://www.washingtonpost.com/news/to-your-health/wp/2017/08/03/senate-passes-right-to-try-bill-to-help-terminally-ill-patients-get-experimental-drugs/?utm_term=.e3ede86ec174 https://www.washingtonpost.com/news/to-your-health/wp/2017/0...

Houshalter 9y ago
Right to try laws are pretty recent, and they don't completely fix the problem. Not all states have them yet either.
- dekhn 9y ago
  Even before right to try laws, terminally ill patients were the preferred clinical trial subject. It's much easier to justify putting a risky chemical into a person who's about to die. Unfortunately, this biases the statistics you get, making it less clear whether the treatment would be helpful in less terminal popuations.

klipt 9y ago

The thing you're talking about exists, they're called clinical trials: https://clinicaltrials.gov/ https://clinicaltrials.gov/ You don't even have to be terminally ill to sign up, there are clinical trials for treatments for non-terminal conditions too.

nsxwolf 9y ago
But what if you don't want to take the chance that you'll be in the placebo group?
- vkou 9y ago
  Then you're guaranteed to die. Placebo trials are done to benefit the many.
- klipt 9y ago
  1) The control arm of the trial is seldom a placebo, it's more likely to be the current standard of care (i.e. best possible already FDA approved treatment) 2) Not all clinical trials have a control arm. It depends on the phase of the trial among other things.
- deleted 9y ago
  [deleted]

TCM 9y ago

What about errors or changes in your diagnosis? John Bain (game review youtuber) was diagnosed with Cancer and in 2015 his cancer was determined to be uncurable. But, his diagnosis changed and now he is in remission again. See https://en.wikipedia.org/wiki/TotalBiscuit https://en.wikipedia.org/wiki/TotalBiscuit

Ralfp 9y ago
This isn't entirely true (not is Wikipedia accurate in its story of his illness). TB is participating on clinical trials for effectiveness of Panitumumab in stage 4 colon cancer patients, its this drug that produced remission in his illness. Original diagnosis was not wrong.
dv_dt 9y ago
I would think that part of an ethical protocol for testing would include a frank discussion with each patient about the probabilities of various outcomes and trading off actions in that landscape.

tpallarino 9y ago

If there is a consenting adult who wants to do it, why not? As long as they understand the risks and that success is incredibly unlikely.

rscho 9y ago

Because cancer patients, at the difference of car accident victims, are legally fully capable of consent. In addition, many people will try anything to live longer. Some patients are genuinely willing to contribute as research subjects in the hope of helping others, and this is a good reason to participate. What many people embarking on studies for new treatments do not realize, is that studies are not designed to benefit them personally (random assignation to placebo group, etc.). It is a common perception that people embarking on a clinical trial hoping for a miraculous cure have the wrong attitude, as there is little chance that you will be cured, and it will be a collateral effect even if it does happen. PS: the above is a widely accepted opinion in current medical ethics.

Aaargh20318 9y ago
But why does it have to be research only ? Why not just make the treatment available, even if it's not proven yet ? If someone is terminal anyway, then what do they have to lose ?
- QAPereo 9y ago
  What time they have left, and then introduction of needless agony.
  - Aaargh20318 9y ago
    I'd gladly gamble a few weeks of my life for the chance to gain decades.
    - QAPereo 9y ago
      Very few people with terminal illnesses ever face those odds, you're usually trading months for years, or more months.
    - rscho 9y ago
      In the past week, I have taken care of 2 patients with multimetastatic cancer. Their history is that basically, they suffered pretty much all complications you could think of from their treatment (surgery and chemo). The US healthcare system went to extreme lengths to ensure that those people are "not let down". Their situation now is that they are dependent on family, breathe through a tracheostomy, are blind, unable to move normally due to shortness of breath and neuropathy, and generally have a dismal quality of life. They still come to the clinic once in a while to have the most recent body part affected by metastasis removed. Yet, those people are not on clinical trials because it is felt (not by me mind, but not my call...) that there are still things to be done with presently known treatment methods. All that to say, try to walk in a terminal patient's shoes for a bit, and perhaps you'll discover that the cost of increasing lifetime can be higher than you are willing to pay. Plus, we don't have the manufacturing and logistic capabilities to provide every possible experimental treatment to everyone. Finally, you should realize that a lot of people have financial, academic, or even political interests to incentivize participation in clinical trials. It is precisely to avoid that, that patients must be informed that trials are not designed for one's personal benefit.