Over the past 30 years of practicing primary care, I can tell you for a fact that the average male has little interest or capacity to have "shared decision" making for this issue (not to insult men, but it just turns into this). Almost every time I bring it up, I'm met with a blank stare and then "well, it's just a blood test - what's controversial about that?" OK. Physicians can't even agree on this issue so of course the discussion (as we've set it up till now) will revolve around what and how the physician presents. What would seem to make most sense is a universally agreed-upon and patient-focused information sheet. Let the patient read what information should rightfully be presented. Allow them to ask questions if desired. Let them decide. Or only give this informational sheet to men who ask for it - from the general guidelines, the optimal approach would be to have a list of possible screenings based on age/sex, give patient a list and see what they are truly interested in. That is how prostate screening is suggested. Otherwise, we definitely put physician values and circumstance into it. I don't know anywhere in the US where this type of approach is done - but it should be.
When MD PCP encounters are limited to maybe 20 min reducing complexity to simplicity seems to be the rule. Not much time to delve into quantitative decision making. Patients armed with AI research are scorned for not being a medical professional & wasting time. Risk Information is rarely presented to include that value of doing nothing. Asymptomatic screening discovery also takes a psychological toll on individuals & family. What if I now know that something has been found that is potentially harmful or perhaps fatal & I do nothing. If that selfish? If mortality is not order of magnitude reduced by screening & the risks of biopsy complications are higher than if one had not been screened why not just leave well enough alone. Perhaps the patient information that should be presented is the difficulty/risk of the procedures to address the problem and the quality of life impact post treatment. The decision making options should include doing nothing. The irony is that if screening had not been done the treatment decision would be unnecessary.
It is difficult for me to see where a philosophy of justice comes into play here. There is no "shared" decision making. The patient always makes the decision. The doctor's role is to make the diagnosis and present options to the patient; presenting the benefits and possible harms of each course of action as they see it based on the evidence.
The sample statement is a good summary of the evidence. But in my experience, I’m not sure that degree of granular information will be helpful for the average patient.
The essence of effective communication and a meaningful consent process is to ensure that the patient actually understands and can contextualize what you’re telling them.
So while I agree that “selling it” one way or the other is not what’s called for, part of our job is also to meet the patient where they’re at. And that meeting point will almost certainly NOT be “the number needed to screen is 456” for many of them.
I think there is a role for an AI partner in shared decision making. A review of AI summarized evidence could assist a portion of the population in getting to a more rational basis.
I think this is the most important sentence in this essay. "At the core of these guidelines is shared decision-making, in which clinicians and patients make decisions by incorporating medical evidence about risks and benefits with the patient’s values."
Regarding the balance between longer life and quality of life, I find that my values are often ignored, or even denigrated, by some of my physicians.
Joe Biden apparently was not even informed of whether he would like to continue with PSA testing beyond 70. He now has advanced prostate ca with mets. I am sure he would disagree with the original premise expounded in this article.
I agree with this analysis and the need for epistemic justice, but rather than looking to antiquity for guidance based on an abstract, vague and fanciful notion such as “harmony in a tri-partite soul” sensible practitioners of medical science in the modern era would be better served by contemporary empirically grounded philosophy, specifically John Rawls’ “Theory of Justice as Fairness.”
Unfortunately, not all doctors understand the statistics, or even know them - not just for PSA screening, but mammograms, PAP tests, routine blood work, etc. There is a lot to know, and I don't fault them for not knowing every statistic off the top of their heads, especially as they change when new studies come out.
To Diana's point, not every person is a rational being. In fact, I would say most of us aren't (I don't have statistics to back that up though). The minute you use a number in a sentence, my sister stops listening because numbers aren't her thing.
I don't think balance comes from the patient and physician having the same exact information. I do think that the physician or practitioner needs to have time to listen to the patient and help them through the decision. Does that mean throwing numbers at them? Maybe, maybe not. By listening to the patient, allowing them to ask questions, maybe even suggesting a second opinion, hopefully, it helps keep the relationship from being too unbalanced.
I'll give your script a try next time I have a PSA discussion and report back.
My usual prostate cancer spiel starts by explaining the idea of screening. I'd guess somewhere around 2/3 of my eligible patients who get physicals opt for a PSA which is quite high, I see, compared to national averages a quick search produces. Hmm. I wonder if I'm overselling it.
I agree with Diana. In addition, if you spout numbers to a patient in an exam room to see if you should order a PSA, they’re not necessarily going to be that meaningful in the moment. They require reflection. Usually a patient is going to ask what you recommend, occasionally they just want to “make sure” they don’t have cancer (no matter what you say), and they don’t care about the numbers.
These arguments would work in a world dominated only by reason, where all patients and all doctors understand completely the evidence presented and the risk of each next step in the treatment plan. If you follow this, then all current evidence should be presented for all medical decisions - not only those for screening. It would mean every time a doctor recommends Ibuprofen for muscle aches or fever he/she should explain in detail that 1 in about 100,000 people taking ibuprofen can develop acute renal failure, and list of all the other complications that could appear with their associated risk. In the spirit of justice, it should also be included in all our daily activities - because health is a whole person and entire day thing. For example a reminder every time you start your car that the risk of death is about 1 in 100, and the risk of an accident in the next 1,000 miles is 1 in 366 people, and then all the relevant statistics for how much money the average car accident costs. All of this is evidence is reasonable and needed to make sure people make an adequate and informed decision about driving to work that day, weighing the benefits and risks involved.
The problem with a purely rational view of life and medicine is that we are not all rational beings. Even Plato recognized that there’s spirit and appetite also, apart from reason. The reality is that no matter how smart someone is, or how much knowledge they have, the perception of risk for their own person is intrinsically connected to emotion, experiences, values and beliefs. None of these are stagnant - because unlike the absolute numeric risk of an adverse event - but are changing constantly, sometimes even from one day to the next. The numbers on PSA screening might mean something for me today, but tomorrow, after my 50 year old brother in law got diagnosed with a very aggressive, thankfully still incapsulated, prostate cancer based on a random screening PSA - these numbers will mean something different, because I’ve seen and felt what being that 1 in 366 is.
The other problem is that your average patient doesn’t want to make all healthcare decisions themselves. Part of a good doctor patient relationship is the partial transference of some autonomy that comes with trusting the doctor, and allowing him/her to make some decisions, while sharing some others. This is a crucial component of medicine, that is implicitly understood by all. Me as a patient (even very well informed one as a physician myself) could not bear the weight of being responsible for the entirety of every single medical decision based on EBM, without having a trusted doctor who makes recommendations in a more qualitative way.
In the end, the core of shared decision making is not to communicate rational facts, but to do it in the context of the values and preferences of the patient. That context, the relationship with the doctor and human connection that allows SDM to occur are important and, in my opinion, is one of the reasons physicians won’t be replaced by AI, at least not for the foreseeable future.
Yes, in an otherwise excellent comment that number is a head scratcher. Diana missed a few zeroes there. The risk of death of driving an automobile in the USA is around one per 70 million miles.
Excellent discussion. Perhaps the use of the risk of harms to benefit ratio would be useful in discussing PSA screening with patients would be useful.
Over the past 30 years of practicing primary care, I can tell you for a fact that the average male has little interest or capacity to have "shared decision" making for this issue (not to insult men, but it just turns into this). Almost every time I bring it up, I'm met with a blank stare and then "well, it's just a blood test - what's controversial about that?" OK. Physicians can't even agree on this issue so of course the discussion (as we've set it up till now) will revolve around what and how the physician presents. What would seem to make most sense is a universally agreed-upon and patient-focused information sheet. Let the patient read what information should rightfully be presented. Allow them to ask questions if desired. Let them decide. Or only give this informational sheet to men who ask for it - from the general guidelines, the optimal approach would be to have a list of possible screenings based on age/sex, give patient a list and see what they are truly interested in. That is how prostate screening is suggested. Otherwise, we definitely put physician values and circumstance into it. I don't know anywhere in the US where this type of approach is done - but it should be.
Great post. Also enjoyed some of the thoughtful comments.
When MD PCP encounters are limited to maybe 20 min reducing complexity to simplicity seems to be the rule. Not much time to delve into quantitative decision making. Patients armed with AI research are scorned for not being a medical professional & wasting time. Risk Information is rarely presented to include that value of doing nothing. Asymptomatic screening discovery also takes a psychological toll on individuals & family. What if I now know that something has been found that is potentially harmful or perhaps fatal & I do nothing. If that selfish? If mortality is not order of magnitude reduced by screening & the risks of biopsy complications are higher than if one had not been screened why not just leave well enough alone. Perhaps the patient information that should be presented is the difficulty/risk of the procedures to address the problem and the quality of life impact post treatment. The decision making options should include doing nothing. The irony is that if screening had not been done the treatment decision would be unnecessary.
It is difficult for me to see where a philosophy of justice comes into play here. There is no "shared" decision making. The patient always makes the decision. The doctor's role is to make the diagnosis and present options to the patient; presenting the benefits and possible harms of each course of action as they see it based on the evidence.
The sample statement is a good summary of the evidence. But in my experience, I’m not sure that degree of granular information will be helpful for the average patient.
The essence of effective communication and a meaningful consent process is to ensure that the patient actually understands and can contextualize what you’re telling them.
So while I agree that “selling it” one way or the other is not what’s called for, part of our job is also to meet the patient where they’re at. And that meeting point will almost certainly NOT be “the number needed to screen is 456” for many of them.
I think there is a role for an AI partner in shared decision making. A review of AI summarized evidence could assist a portion of the population in getting to a more rational basis.
I think this is the most important sentence in this essay. "At the core of these guidelines is shared decision-making, in which clinicians and patients make decisions by incorporating medical evidence about risks and benefits with the patient’s values."
Regarding the balance between longer life and quality of life, I find that my values are often ignored, or even denigrated, by some of my physicians.
Joe Biden apparently was not even informed of whether he would like to continue with PSA testing beyond 70. He now has advanced prostate ca with mets. I am sure he would disagree with the original premise expounded in this article.
I agree with this analysis and the need for epistemic justice, but rather than looking to antiquity for guidance based on an abstract, vague and fanciful notion such as “harmony in a tri-partite soul” sensible practitioners of medical science in the modern era would be better served by contemporary empirically grounded philosophy, specifically John Rawls’ “Theory of Justice as Fairness.”
Unfortunately, not all doctors understand the statistics, or even know them - not just for PSA screening, but mammograms, PAP tests, routine blood work, etc. There is a lot to know, and I don't fault them for not knowing every statistic off the top of their heads, especially as they change when new studies come out.
To Diana's point, not every person is a rational being. In fact, I would say most of us aren't (I don't have statistics to back that up though). The minute you use a number in a sentence, my sister stops listening because numbers aren't her thing.
I don't think balance comes from the patient and physician having the same exact information. I do think that the physician or practitioner needs to have time to listen to the patient and help them through the decision. Does that mean throwing numbers at them? Maybe, maybe not. By listening to the patient, allowing them to ask questions, maybe even suggesting a second opinion, hopefully, it helps keep the relationship from being too unbalanced.
I'll give your script a try next time I have a PSA discussion and report back.
My usual prostate cancer spiel starts by explaining the idea of screening. I'd guess somewhere around 2/3 of my eligible patients who get physicals opt for a PSA which is quite high, I see, compared to national averages a quick search produces. Hmm. I wonder if I'm overselling it.
I agree with Diana. In addition, if you spout numbers to a patient in an exam room to see if you should order a PSA, they’re not necessarily going to be that meaningful in the moment. They require reflection. Usually a patient is going to ask what you recommend, occasionally they just want to “make sure” they don’t have cancer (no matter what you say), and they don’t care about the numbers.
These arguments would work in a world dominated only by reason, where all patients and all doctors understand completely the evidence presented and the risk of each next step in the treatment plan. If you follow this, then all current evidence should be presented for all medical decisions - not only those for screening. It would mean every time a doctor recommends Ibuprofen for muscle aches or fever he/she should explain in detail that 1 in about 100,000 people taking ibuprofen can develop acute renal failure, and list of all the other complications that could appear with their associated risk. In the spirit of justice, it should also be included in all our daily activities - because health is a whole person and entire day thing. For example a reminder every time you start your car that the risk of death is about 1 in 100, and the risk of an accident in the next 1,000 miles is 1 in 366 people, and then all the relevant statistics for how much money the average car accident costs. All of this is evidence is reasonable and needed to make sure people make an adequate and informed decision about driving to work that day, weighing the benefits and risks involved.
The problem with a purely rational view of life and medicine is that we are not all rational beings. Even Plato recognized that there’s spirit and appetite also, apart from reason. The reality is that no matter how smart someone is, or how much knowledge they have, the perception of risk for their own person is intrinsically connected to emotion, experiences, values and beliefs. None of these are stagnant - because unlike the absolute numeric risk of an adverse event - but are changing constantly, sometimes even from one day to the next. The numbers on PSA screening might mean something for me today, but tomorrow, after my 50 year old brother in law got diagnosed with a very aggressive, thankfully still incapsulated, prostate cancer based on a random screening PSA - these numbers will mean something different, because I’ve seen and felt what being that 1 in 366 is.
The other problem is that your average patient doesn’t want to make all healthcare decisions themselves. Part of a good doctor patient relationship is the partial transference of some autonomy that comes with trusting the doctor, and allowing him/her to make some decisions, while sharing some others. This is a crucial component of medicine, that is implicitly understood by all. Me as a patient (even very well informed one as a physician myself) could not bear the weight of being responsible for the entirety of every single medical decision based on EBM, without having a trusted doctor who makes recommendations in a more qualitative way.
In the end, the core of shared decision making is not to communicate rational facts, but to do it in the context of the values and preferences of the patient. That context, the relationship with the doctor and human connection that allows SDM to occur are important and, in my opinion, is one of the reasons physicians won’t be replaced by AI, at least not for the foreseeable future.
No, the risk of dying every time you start your car is not 1 in a 100. If that were true, no one would drive.
Yes, in an otherwise excellent comment that number is a head scratcher. Diana missed a few zeroes there. The risk of death of driving an automobile in the USA is around one per 70 million miles.