4 ms·

> We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding

by thomasz 13y ago

> We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding of statistics When I was at the receiving end of that talk, this attitude made me incredibly angry. They know exactly that we will look up those numbers, they are just too afraid to have a honest discussion with us. People make very bad decisions because those numbers are discussed at forums, without the involvement of people who can interpret the statistical and medical significance of scientific studies.

smnrchrds 13y ago
Exactly. It's kind of like not telling your kids about sex: They will try to find information on their own and most probably they will be misinformed.
vanderZwan 13y ago
And would you suggest doctors would take two to three extra hours with every patient to work them through a basic statistics class which still isn't sufficient to explain the concept?
- thomasz 13y ago
  Two to three extra hours is vastly exaggerated, and not that much time for someone who needs to know the chances of dying a horrible death. I might add that this is an objection based on economic argumentation, which, while not invalid, is not the one given by doctors. They argue like the author of the article did: That they know better than you how you will react to this kind of information, and that they can manage your morale by taking certain freedoms with the truth. I think that this is an unworthy and authoritarian approach which only leads to distrust: How can that guy say that I will certainly survive when Wikipedia, Lymphoma.org and the fucking New England Journal of Medicine agree that there is a one in five chance of me biting the dust in the next few years?
  - vanderZwan 13y ago
    > I might add that this is an objection based on economic argumentation, which, while not invalid, is not the one given by doctors If you think doctors don't have time for you for economic reasons, and not the fact that there are other patients out there, you really have no idea what doctors do all day. > They argue like the author of the article did: That they know better than you how you will react to this kind of information, and that they can manage your morale by taking certain freedoms with the truth. They have far more experience with people receiving this information than the person receiving it.
    - thomasz 13y ago
      > If you think doctors don't have time for you for economic reasons, and not the fact that there are other patients out there, you really have no idea what doctors do all day. You are the one who explains that behavior with economic constraints - seemingly without even realizing it. I have written twice that I don't think it comes down to economic reasons. > They have far more experience with people receiving this information than the person receiving it. I think that's a popular misconception. They are highly specialized experts for certain kinds of cancer, not priests, social workers or psychologists. You do not have deep conversations with them about how you are coping with the disease and the possibility of dying. You discuss blood counts, treatment plans, possibly options for being recruited into a study population. Or more concisely: They maintain a professional relationship while keeping a healthy emotional distance from their patients. And nobody should blame them for that. After all, you go to the doctor to get treatment for your cancer, not a shoulder to cry on.
  - TeMPOraL 13y ago
    I had some university classes with a doctor few years ago; he brought up the WHO definition of health: "A state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity." (emphasis mine) He then told that questions like "should we tell the patient that he has two years left, and watch him and his family live the life of constant worry and sadness (and probably of a therapy that will add a year or so to the total lifespan, at the cost of being painful for the patient and very taxing to the family), or should we omit that information and let him live his life out in peace and happiness?" are part of an on-going ethical debate in medicine - because of the need to balance the "mental well-being" part with the "absence of disease". Also, while telling the truth is a virtue, doing so knowing that people had, and will, predictably hurt themselves with it seems less so.
- deleted 13y ago
  [deleted]
- robert-wallis 13y ago
  In the case of terminal illness. Absolutely. In fact, they should be sending the charts to a specialist teaching a week long personalized class to help them understand the data.
thejteam 13y ago
Many doctors also don't have a nuanced understanding of statistics. They can quote you the survival numbers you can read elsewhere and they can quote you other people's interpretation of them, but if you have a question that deviates from the literature they are familiar with they may not be able to provide additional interpretation. Do medical schools teach stats? I know a couple of doctors(General Practitioners) that never took a stats class as an undergrad. My brother is a PhD in Cellular Biology and he learned stats as he went and never had a formal class.
- bladedtoys 13y ago
  If they get such classes, they sleep through them and have for decades. There are studies (Eddy 1982; Gigerenzer and Hoffrage 1995) that show only a small percent of physicians understand even basic statistics. Just Google same and you'll get a zillion links to freshman college homework discussing the problem.
  - larrys 13y ago
    Perhaps it's not as important as the other things they need to learn. While I don't know the answer I wouldn't assume that having a basic understanding of statistics is better than other things they are memorizing and understanding. (It could be but you can't assume that. Similar to feature creep with products or software.)
    - rayiner 13y ago
      A basic understanding of statistics is crucial to being a doctor. When my wife was pregnant, we were faced with decisions like whether to get genetic testing and whether to breastfeed, but were frustrated to deal with statistical incompetence from doctors and nurses who couldn't explain the consequences of courses of action except in child-like "do this" and "don't do this" ways. One nurse, when discussing IUDs, quoted a failure rate by itself as a percentage. When we asked about the time frame, not only did she not know it, but she couldn't understand why a failure percentage was meaningless without reference to a time frame. And forget about being able to reason through the research on alcohol exposure in pregnancy or breastfeeding.
kyleblarson 13y ago
I suspect that in the US in particular, doctors are also hesitant to give specific numbers or statistics for fear of the abusively litigious nature of our system.
saraid216 13y ago
If they gave numbers and explained the statistical significance, people would go and Google things and come to the conclusion that the doctor was wrong. Doesn't matter if the doctor was right; they'd still think they were wrong.
MarkMc 13y ago
I too was on the receiving end of that talk. Are statistics so really so difficult that doctors cannot give them to patients? Here's a Kaplan-Meier curve for patients with Leukaemia: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3202035/figure/F1/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3202035/figure/F... Would it really be so difficult to say, "We estimate you have a 50% chance of being alive in 18 months, and a 25% chance of being alive in 10 years. But don't give up hope because that will reduce your chances."
- thomasz 13y ago
  The problem with the Kaplan-Meier curve is that most of the time, they represents figures about the whole patient population, but depending on the disease, there are extreme differences between stages and possibly dozens of cytogenetic factors. AML 5 year survival can be as low as ~15% and as high as ~70%. For Melanoma patients, it ranges between 100% (in situ) and 10% (stage IV).

by thomasz 13y ago

smnrchrds 13y ago

Exactly. It's kind of like not telling your kids about sex: They will try to find information on their own and most probably they will be misinformed.

vanderZwan 13y ago

And would you suggest doctors would take two to three extra hours with every patient to work them through a basic statistics class which still isn't sufficient to explain the concept?

thomasz 13y ago
Two to three extra hours is vastly exaggerated, and not that much time for someone who needs to know the chances of dying a horrible death. I might add that this is an objection based on economic argumentation, which, while not invalid, is not the one given by doctors. They argue like the author of the article did: That they know better than you how you will react to this kind of information, and that they can manage your morale by taking certain freedoms with the truth. I think that this is an unworthy and authoritarian approach which only leads to distrust: How can that guy say that I will certainly survive when Wikipedia, Lymphoma.org and the fucking New England Journal of Medicine agree that there is a one in five chance of me biting the dust in the next few years?
- vanderZwan 13y ago
  > I might add that this is an objection based on economic argumentation, which, while not invalid, is not the one given by doctors If you think doctors don't have time for you for economic reasons, and not the fact that there are other patients out there, you really have no idea what doctors do all day. > They argue like the author of the article did: That they know better than you how you will react to this kind of information, and that they can manage your morale by taking certain freedoms with the truth. They have far more experience with people receiving this information than the person receiving it.
  - thomasz 13y ago
    > If you think doctors don't have time for you for economic reasons, and not the fact that there are other patients out there, you really have no idea what doctors do all day. You are the one who explains that behavior with economic constraints - seemingly without even realizing it. I have written twice that I don't think it comes down to economic reasons. > They have far more experience with people receiving this information than the person receiving it. I think that's a popular misconception. They are highly specialized experts for certain kinds of cancer, not priests, social workers or psychologists. You do not have deep conversations with them about how you are coping with the disease and the possibility of dying. You discuss blood counts, treatment plans, possibly options for being recruited into a study population. Or more concisely: They maintain a professional relationship while keeping a healthy emotional distance from their patients. And nobody should blame them for that. After all, you go to the doctor to get treatment for your cancer, not a shoulder to cry on.
- TeMPOraL 13y ago
  I had some university classes with a doctor few years ago; he brought up the WHO definition of health: "A state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity." (emphasis mine) He then told that questions like "should we tell the patient that he has two years left, and watch him and his family live the life of constant worry and sadness (and probably of a therapy that will add a year or so to the total lifespan, at the cost of being painful for the patient and very taxing to the family), or should we omit that information and let him live his life out in peace and happiness?" are part of an on-going ethical debate in medicine - because of the need to balance the "mental well-being" part with the "absence of disease". Also, while telling the truth is a virtue, doing so knowing that people had, and will, predictably hurt themselves with it seems less so.
deleted 13y ago
[deleted]
robert-wallis 13y ago
In the case of terminal illness. Absolutely. In fact, they should be sending the charts to a specialist teaching a week long personalized class to help them understand the data.

thejteam 13y ago

Many doctors also don't have a nuanced understanding of statistics. They can quote you the survival numbers you can read elsewhere and they can quote you other people's interpretation of them, but if you have a question that deviates from the literature they are familiar with they may not be able to provide additional interpretation. Do medical schools teach stats? I know a couple of doctors(General Practitioners) that never took a stats class as an undergrad. My brother is a PhD in Cellular Biology and he learned stats as he went and never had a formal class.

bladedtoys 13y ago
If they get such classes, they sleep through them and have for decades. There are studies (Eddy 1982; Gigerenzer and Hoffrage 1995) that show only a small percent of physicians understand even basic statistics. Just Google same and you'll get a zillion links to freshman college homework discussing the problem.
- larrys 13y ago
  Perhaps it's not as important as the other things they need to learn. While I don't know the answer I wouldn't assume that having a basic understanding of statistics is better than other things they are memorizing and understanding. (It could be but you can't assume that. Similar to feature creep with products or software.)
  - rayiner 13y ago
    A basic understanding of statistics is crucial to being a doctor. When my wife was pregnant, we were faced with decisions like whether to get genetic testing and whether to breastfeed, but were frustrated to deal with statistical incompetence from doctors and nurses who couldn't explain the consequences of courses of action except in child-like "do this" and "don't do this" ways. One nurse, when discussing IUDs, quoted a failure rate by itself as a percentage. When we asked about the time frame, not only did she not know it, but she couldn't understand why a failure percentage was meaningless without reference to a time frame. And forget about being able to reason through the research on alcohol exposure in pregnancy or breastfeeding.

kyleblarson 13y ago

I suspect that in the US in particular, doctors are also hesitant to give specific numbers or statistics for fear of the abusively litigious nature of our system.

saraid216 13y ago

If they gave numbers and explained the statistical significance, people would go and Google things and come to the conclusion that the doctor was wrong. Doesn't matter if the doctor was right; they'd still think they were wrong.

MarkMc 13y ago

I too was on the receiving end of that talk. Are statistics so really so difficult that doctors cannot give them to patients? Here's a Kaplan-Meier curve for patients with Leukaemia: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3202035/figure/F1/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3202035/figure/F... Would it really be so difficult to say, "We estimate you have a 50% chance of being alive in 18 months, and a 25% chance of being alive in 10 years. But don't give up hope because that will reduce your chances."

thomasz 13y ago
The problem with the Kaplan-Meier curve is that most of the time, they represents figures about the whole patient population, but depending on the disease, there are extreme differences between stages and possibly dozens of cytogenetic factors. AML 5 year survival can be as low as ~15% and as high as ~70%. For Melanoma patients, it ranges between 100% (in situ) and 10% (stage IV).