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Better end-of-life care isn't a technological problem. When people have terminal cancer they are still usually advised or persuaded to take chemo and/or radiat

Better end-of-life care isn't a technological problem. When people have terminal cancer they are still usually advised or persuaded to take chemo and/or radiation, which royally destroy their bodies, as anyone who had a loved one go through treatment knows. In the case of many late stage cancer cases it's generally known that the person is at the end of their life, yet the medical establishment still tends to focus on treatment rather than actual care. How does machine learning help the cultural problem?

deckar01 9y ago
> it's generally known that the person is at the end of their life, yet the medical establishment still tends to focus on treatment rather than actual care That is exactly what they are trying to address. These doctors are basing their treatment on statistics that don't account for the intricacies of an individual patient's condition. A machine learning model can account for correlations between obscure attributes to predict the success of treatment with much higher confidence than they have now.
- AstralStorm 9y ago
  The machine learning model can also be as wrong as the doctors at predictions. What happens then? Surely not a headline of "Stanford death model is worthless" right? Even worse if treatments are forgone or triaged based on output on some incomplete model. Older people already have trouble getting access to life saving surgeries due to mortality statistics. (And no doctor wants to have a dead patient on table, liabilities notwithstanding.)
sharmi 9y ago
Often in cancer, cure and palliative care are often one. Controlling the growth of cancer cells is needed to control pain. Often the pain caused by cancerous tumours cannot be suppressed by usual pain killers. The kind of medication given for cancer treatment has vastly improved in the last 10 years, atleast for the less aggressive forms of cancer (and yes, there is such a thing). As a corollary, there are also highly aggressive forms, the kind that sends chills into your heart.
- kruhft 9y ago
  Any particular reason 'usual pain kiilers' don't work?
  - epmaybe 9y ago
    I believe that the usual pain killers are things like ibuprofen and acetaminophen (paracetamol for you non-US folks). Cancer pain is this deep chronic pain that we can't really reduce with those standard pain killers. It's just a variety of factors that are not adequately treated by what is essentially an anti-inflammatory. For more info check out this review article on cancer pain physiology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4616725/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4616725/ So the alternatives for patients are putting them on drugs like opioids, gabapentin, and even cannabinoids.
    - kruhft 9y ago
      Thanks for explaining. I wasn't sure which pain killers you were talking about. Cannaboids are highly effective at pain relief. I"m glad they're being legalized soon here.
- mirimir 9y ago
  I gather that you exclude opiates from "usual pain killers". That seems odd. For someone dying of cancer, what's the problem being addicted to opiates? Also, an old-school "peaceful death" option is alcohol + morphine + cocaine. The patient dies without pain, and happy. And their family and friends get closure.
pflats 9y ago
Is it a cultural problem, or is it culture? Is there a minimum empirical success rate you would be comfortable setting for a procedure that could significantly extend a patients life? Personally, I think the best solution is to push large medical groups to mandate professional development on palliative care in their oncology departments. Start with the nurse practitioners.
sriku 9y ago
> How does machine learning help the cultural problem? I think you're right that it is a cultural problem. In the US, the end-of-life decision lies in the hands of the patient's care givers, putting them in mental pain of "did I do the right thing" for years later. I believe this isn't the case in UK/France where the docs advise on the matter, relieving the care givers of said agony.[1] It's a mixed bag in India. Since we're talking about a system that predicts end of life, what if we replace it with a game of "let's play life toss" - where heads is a survival prediction and tails isn't, so that both doctors and care givers can have a discussion about either scenario. Would that serve the same purpose as the "AI"? If the AI's purpose is to be studied, something like this game might need to be a control. I'm far from dystopian on this as we already use technology for various aids in the care process - declaring coma patients "unconscious", "flat lining" as indicative of death and such. What I do have a problem with is declaring a data fitting function to be an "AI" instead of just saying "statistically there is a 90% chance of death within the next 7 months" or something more straight forward like that. However complicated that function is, the fact that it is only derived from EHR data doesn't make it an "AI" for additional creds. The system must at least be able to evaluate a number of scenarios it hasn't seen and map out their outcomes to even begin to be considered for qualification ... like a game playing engine. [1]: https://www.nytimes.com/2014/08/01/world/europe/french-families-challenge-doctors-on-wrenching-end-of-life-decisions-medicalized-hospital-deaths.html https://www.nytimes.com/2014/08/01/world/europe/french-famil... ''' “I told them, ‘Hold on, it’s not you making the decision — it’s me,’ ” said Dr. Kariger. “Free yourselves of any feeling of guilt.” ''' Relevant tweet on technology ethics - https://twitter.com/fox/status/948052707830460416 https://twitter.com/fox/status/948052707830460416 PS: A relative of mine helps terminal cancer patients come to terms with their death. The mental journeys are multi-dimensionally diverse from what I hear.
viraptor 9y ago
> yet the medical establishment still tends to focus on treatment rather than actual care Have you actually talked to doctors about it? As in those who get the initial talk, not those who get patients already decided to try something? I know quite a few GPs and they often do a serious talk with people with cancer who want "everything possible done". Or with families who want that for their grandparents. They try to discourage useless treatment as much as possible. Often by listing the side effects that are going to just decrease the quality of life even worse. (Just in case: yes, there will be different doctors and different opinions. What I'm trying to say is generalising to medical establishment is not accurate and not helpful. Also I'm glad that if someone makes the decision to get treatment they can get it - it may be a really bad decision, but it's their decision.)
- DanielBMarkham 9y ago
  When my mom had terminal cancer, her GP told her she was out of options. Then a nearby "cancer center" got a hold on her, I believe through one of the diagnostic partners she was using. Two weeks later she was in heavy chemo -- as an elderly person who had almost a zero chance to survive. She ended up with MRSA and in intensive care in isolation. I lived far away and traveled to see her when I heard her condition gotten worse. I'll never forget her GP walking in. My mom couldn't hear well. Her GP was both sad and angry. She didn't have any idea how she ended up in the ICU. He explained to her again that all we had left was palliative care, perhaps hospice. I could tell this wasn't the first time he had had this talk. There had been many other patients. When he left my mom looked at me and said "What'd he say?" So I sat next to her, took her hand, and explained that the doctors had done all they could for her and she would die soon. I'll never forget that, either the talk or the look on that GP's face. We have a terribly broken system.
  - bluetwo 9y ago
    Sorry to hear your family had this horrible experience.
- deleted 9y ago
  [deleted]
merpnderp 9y ago
Quite often they just don't know. Is it pneumonia in the lungs or has the cancer spread? Likely a bit of both. If we can clear out the infection can we start chemo again and buy another year or two? If people want to err on the side of taking a chance at living, let them.
acchow 9y ago
Agree we have a cultural problem which fights for life no matter the cost (cost in $, cost in QOL, etc). But if you got a great and empathetic doctor, they would not advise treatment against terminal cancer.
joshuahedlund 9y ago
Relevant: - http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/ http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/ - http://nautil.us/issue/55/trust/what-we-get-wrong-about-dying http://nautil.us/issue/55/trust/what-we-get-wrong-about-dyin...
lighttower 9y ago
What about taking into account the societal benefit from participation in clinical trials? Farber would have never discovered what became curative chemotherapy for pediatric leukemia if it weren't for the ability to try to cure what pediatricians had dismissed as hopeless cases.
- TheSpiceIsLife 9y ago
  Pediatrics seems like a reasonable exception. If you're seven weeks old, seven months old, or seventeen years old it might be worth a shot. Probably not so much if you're ninety-seven.

deckar01 9y ago

> it's generally known that the person is at the end of their life, yet the medical establishment still tends to focus on treatment rather than actual care That is exactly what they are trying to address. These doctors are basing their treatment on statistics that don't account for the intricacies of an individual patient's condition. A machine learning model can account for correlations between obscure attributes to predict the success of treatment with much higher confidence than they have now.

AstralStorm 9y ago
The machine learning model can also be as wrong as the doctors at predictions. What happens then? Surely not a headline of "Stanford death model is worthless" right? Even worse if treatments are forgone or triaged based on output on some incomplete model. Older people already have trouble getting access to life saving surgeries due to mortality statistics. (And no doctor wants to have a dead patient on table, liabilities notwithstanding.)

sharmi 9y ago

Often in cancer, cure and palliative care are often one. Controlling the growth of cancer cells is needed to control pain. Often the pain caused by cancerous tumours cannot be suppressed by usual pain killers. The kind of medication given for cancer treatment has vastly improved in the last 10 years, atleast for the less aggressive forms of cancer (and yes, there is such a thing). As a corollary, there are also highly aggressive forms, the kind that sends chills into your heart.

kruhft 9y ago
Any particular reason 'usual pain kiilers' don't work?
- epmaybe 9y ago
  I believe that the usual pain killers are things like ibuprofen and acetaminophen (paracetamol for you non-US folks). Cancer pain is this deep chronic pain that we can't really reduce with those standard pain killers. It's just a variety of factors that are not adequately treated by what is essentially an anti-inflammatory. For more info check out this review article on cancer pain physiology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4616725/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4616725/ So the alternatives for patients are putting them on drugs like opioids, gabapentin, and even cannabinoids.
  - kruhft 9y ago
    Thanks for explaining. I wasn't sure which pain killers you were talking about. Cannaboids are highly effective at pain relief. I"m glad they're being legalized soon here.
mirimir 9y ago
I gather that you exclude opiates from "usual pain killers". That seems odd. For someone dying of cancer, what's the problem being addicted to opiates? Also, an old-school "peaceful death" option is alcohol + morphine + cocaine. The patient dies without pain, and happy. And their family and friends get closure.

pflats 9y ago

Is it a cultural problem, or is it culture? Is there a minimum empirical success rate you would be comfortable setting for a procedure that could significantly extend a patients life? Personally, I think the best solution is to push large medical groups to mandate professional development on palliative care in their oncology departments. Start with the nurse practitioners.

sriku 9y ago

> How does machine learning help the cultural problem? I think you're right that it is a cultural problem. In the US, the end-of-life decision lies in the hands of the patient's care givers, putting them in mental pain of "did I do the right thing" for years later. I believe this isn't the case in UK/France where the docs advise on the matter, relieving the care givers of said agony.[1] It's a mixed bag in India. Since we're talking about a system that predicts end of life, what if we replace it with a game of "let's play life toss" - where heads is a survival prediction and tails isn't, so that both doctors and care givers can have a discussion about either scenario. Would that serve the same purpose as the "AI"? If the AI's purpose is to be studied, something like this game might need to be a control. I'm far from dystopian on this as we already use technology for various aids in the care process - declaring coma patients "unconscious", "flat lining" as indicative of death and such. What I do have a problem with is declaring a data fitting function to be an "AI" instead of just saying "statistically there is a 90% chance of death within the next 7 months" or something more straight forward like that. However complicated that function is, the fact that it is only derived from EHR data doesn't make it an "AI" for additional creds. The system must at least be able to evaluate a number of scenarios it hasn't seen and map out their outcomes to even begin to be considered for qualification ... like a game playing engine. [1]: https://www.nytimes.com/2014/08/01/world/europe/french-families-challenge-doctors-on-wrenching-end-of-life-decisions-medicalized-hospital-deaths.html https://www.nytimes.com/2014/08/01/world/europe/french-famil... ''' “I told them, ‘Hold on, it’s not you making the decision — it’s me,’ ” said Dr. Kariger. “Free yourselves of any feeling of guilt.” ''' Relevant tweet on technology ethics - https://twitter.com/fox/status/948052707830460416 https://twitter.com/fox/status/948052707830460416 PS: A relative of mine helps terminal cancer patients come to terms with their death. The mental journeys are multi-dimensionally diverse from what I hear.

viraptor 9y ago

> yet the medical establishment still tends to focus on treatment rather than actual care Have you actually talked to doctors about it? As in those who get the initial talk, not those who get patients already decided to try something? I know quite a few GPs and they often do a serious talk with people with cancer who want "everything possible done". Or with families who want that for their grandparents. They try to discourage useless treatment as much as possible. Often by listing the side effects that are going to just decrease the quality of life even worse. (Just in case: yes, there will be different doctors and different opinions. What I'm trying to say is generalising to medical establishment is not accurate and not helpful. Also I'm glad that if someone makes the decision to get treatment they can get it - it may be a really bad decision, but it's their decision.)

DanielBMarkham 9y ago
When my mom had terminal cancer, her GP told her she was out of options. Then a nearby "cancer center" got a hold on her, I believe through one of the diagnostic partners she was using. Two weeks later she was in heavy chemo -- as an elderly person who had almost a zero chance to survive. She ended up with MRSA and in intensive care in isolation. I lived far away and traveled to see her when I heard her condition gotten worse. I'll never forget her GP walking in. My mom couldn't hear well. Her GP was both sad and angry. She didn't have any idea how she ended up in the ICU. He explained to her again that all we had left was palliative care, perhaps hospice. I could tell this wasn't the first time he had had this talk. There had been many other patients. When he left my mom looked at me and said "What'd he say?" So I sat next to her, took her hand, and explained that the doctors had done all they could for her and she would die soon. I'll never forget that, either the talk or the look on that GP's face. We have a terribly broken system.
- bluetwo 9y ago
  Sorry to hear your family had this horrible experience.
deleted 9y ago
[deleted]

merpnderp 9y ago

Quite often they just don't know. Is it pneumonia in the lungs or has the cancer spread? Likely a bit of both. If we can clear out the infection can we start chemo again and buy another year or two? If people want to err on the side of taking a chance at living, let them.

acchow 9y ago

Agree we have a cultural problem which fights for life no matter the cost (cost in $, cost in QOL, etc). But if you got a great and empathetic doctor, they would not advise treatment against terminal cancer.

joshuahedlund 9y ago

Relevant: - http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/ http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/ - http://nautil.us/issue/55/trust/what-we-get-wrong-about-dying http://nautil.us/issue/55/trust/what-we-get-wrong-about-dyin...

lighttower 9y ago

What about taking into account the societal benefit from participation in clinical trials? Farber would have never discovered what became curative chemotherapy for pediatric leukemia if it weren't for the ability to try to cure what pediatricians had dismissed as hopeless cases.

TheSpiceIsLife 9y ago
Pediatrics seems like a reasonable exception. If you're seven weeks old, seven months old, or seventeen years old it might be worth a shot. Probably not so much if you're ninety-seven.