I imagine I can come up with many instances in my own life to answer these questions, but the most specific examples to answer all three questions involve my children. To answer the third question: My oldest was born, 34w6d - needless-to-say he was tiny. And nearly 24 years ago, a preemie who was breathing on his own and other wise doing well was released from the hospital (even after a short NICU stay) weighing 4lbs 13oz. The family practice doctor we had chosen was nice enough, but long-story short, my early baby came down with pneumonia but was not diagnosed for several weeks because the family practice doctor, always seemed to assume it was something else. Between that and a never-ending parade of ear-infections and my oldest had a new pediatrician before he turned 1 (and brand-spanking new ear tubes by 13 months).
I have other examples, specifically from oldest; but that leads me to answering both questions 1 and 2, more or less at the same time. Between the above experience and another similar experience (same kid, different doctor, different state, different illness), the next pediatrician I found displayed one thing that the other doctors didn't. Humility. Our first appointment with her, taking my second child in for a check up, she looked at both my husband and I (me being pregnant with #4 at that point) and said, "I may have the degree, but I don't have children yet. You know your kids better than I do, so we'll work together."
My kids' current pediatrician has said pretty much the same thing. And it does wonders to help build trust - when they realize that they may not know everything, and it's better to listen and learn than to prescribe based on what they think they know. They acknowledge that they don't know everything about children and there is a lot I may know more than them, given I have 10 children. I acknowledge that I hated biology in high school and they're the medical professional. In the end, we put what we both know together and try to find the answers.
Of course, humility goes a long way in building trust within pretty much any relationship.
As you say, medicine is a collaborative art, and not just between doctor and patient (though that is the primary collaboration), but between all those involved in allocating scarce medical resources, which explains triage, and the continued use of treatments which are considered inferior when cost and access aren't concerns (but they usually are).
Because gynecological care is a scarce resource, reserving the extra work of fertility-sparing PCOS treatment for patients who intend to become pregnant soon is plausibly economizing. Meanwhile, pregnancy is already considered rather unhealthy for teens (at least socially, sometimes bodily, too), so having the Pill – a cheap drug that's so safe (as drugs go) it's prescribed to otherwise perfectly-healthy people merely to suppress fertility – as a first-line treatment for teens' PCOS may make economic sense. And, to be fair to the Pill, it can do more than merely create the appearance of a normal cycle. It can treat troublesome (even debilitating) symptoms and reduce the risk of certain complications.
Which patients, exactly, are economized on can reflect various biases and stereotypes ("teen girls are drama llamas", "even sick teens' medical priority is ensuring temporary sterility", "religious observance that affects medical decisionmaking is freakish superstition"), but even if impartial triage were humanly possible, economizing on some patients to reserve more resources (especially time and attention) for others would still make sense.
Not that we should dismiss the effects of "bad triage" – we shouldn't:
"One major factor in choosing to trivialize a patient is 'bad triage.' Healthcare is hard, resources are always stretched thin, and most doctors are juggling a lot of priorities and dilemmas… and so they are often keen on any seemingly legit reason to de-prioritize a patient, or at least to make them someone else’s problem (referring).... If you’re going to avoid taking some patients seriously, who gets chosen? Why, the 'difficult' and 'weird' ones, of course! The queers and the freaks and the hysterical ladies! The people with weird subjective symptoms you can’t personally relate to!"
Standing to benefit more from the care not recommended to you than the care that has been is frustrating! This frustration is a normal part of my life, and my medical needs, while above average, aren't *that* great. My latest brush with this frustration came seeking asthma care: According to current standards for asthma treatment, I'm a prime candidate for significant escalation, but documentation verifying my candidacy has proved fragile. (My body doesn't change just because a practice closes unexpectedly or my coverage changes, but the documentation of it does.) Just before that, my positive strep lab was mistakenly dismissed, resulting in reactive arthritis from delayed antibiotic treatment. And so it goes...
I suspect that most of the economizing medical gatekeepers subject me to actually makes sense (if not always to my own well-being, then to the needs of the system as a whole, which will, at times, treat my own well-being as expendable). And, when economizing doesn't make sense to individual patient well-being, patients are stuck managing the consequences as best they can, often without recourse.
To your first bolded question, I feel like we're going through the expert-judgement-versus-preferences thing with my younger kid, just diagnosed with ADHD, as we figure out what kinds of treatments/strategies to pursue. Our pediatrician (not the only expert involved, but our first contact in the matter, so to speak) has had my kids' whole lives to win our trust, and I think he did a lot of it both by living the there-are-no-stupid-questions philosophy (he's also a clear communicator without being simplistic, which I so appreciate), and also because we've gotten to see him be right before.
The best doctor I've ever met (so far) is Jonathan Flacker, who at the time was the geriatric doctor at Emory's Wesley Woods Clinic, where I took my life partner when she began having some serious memory issues. He offered his own expertise with generosity, and without hesitation in saying what he didn't know. He treated both of us with respect, wanting to know our own experiences and always taking them into account. My partner was was adamant about not wanting an MRI to help with diagnosis. Without the slightest hint of disapproval, he said cheerfully, "ok, we can go on without it,"
Between appointments, I could keep a spreadsheet log of any occurrences that might be relevant, and I could email it to him to look at before the next appointment. I could call any time to speak with his team if something urgent came up, and get help. He was the head of the geriatric department, yet his sense of humor was mainly about himself, and he never seemed rushed when with us.
I'll never forget his kindness. In an interview I read about him much later, he said he just loved to get to know older people and hear their stories. I wasn't surprised.
First, did you read the Times piece on organ donation in Ky? Basic gist: organs are being harvested from people who are sentient. So, big example of "dont trust the medical establishment, especially when theres economic incentive to not make you better."
I think what im most curious about with maid is why people need the doctor to say yes when other ways of suicide are easy and painless? This whole frame work is so confusing and seems much more a conversation about anthropology than ethics. Why do doctors need to be involved, ever, in the self directed choice to die? I understand why doctors need to be part of surgical abortion and why we need to litigate that, but it seems all that woman in Canada wants is the shamans touch. Is not the conversation more about normalizing suicide than it is about expertise?
"When (if ever) has an expert won your trust such that you trusted their judgement over your preferences? How was that trust won?"
When I've been healthy enough for music lessons to make sense for me (they more often don't), those who persuade me to improve do so by first showing confidence in what *isn't* wrong with my musicianship. If correction merely feels like punishing me for being "bad" at music, I'm less motivated to improve: less likely to believe I *can* improve, as well as more likely to infer that I've got an instructor with incompatible musical tastes, one who wants me to be different from who I am, but not necessarily better. If correction feels like an investment in my strengths, though, I'm more motivated.
I had some formative experiences with talent punished as a perceived character defect, which may especially sensitize me to the distinction between correction as punishment and correction as investment, but I think sensitivity to this distinction is pretty normal and human.
"When have you felt that an expert actively sought your testimony of your experience to inform their judgement?"
As a patient, I've been left entirely on my own to seek out a relevant specialist – one gatekeepers spent years not even mentioning to me as an option. Upon seeking out the specialist for myself, it turned out my testimony was more-than-usually important to the specialist's conclusion. Whodathunk?!!
Just this week, I noticed another specialist, an allergist, taking extra care with the practice's local Jewish community. The allergist explained to a tech in training the option of omitting testing for shellfish allergy during skin prick testing for patients who keep kosher. I trust (or at least hope) that patients who keep kosher are still given the option of testing for shellfish allergy – that their wish (rather than the practice's judgment that kosher means never exposed to shellfish, however accidentally) dictates the omission.
"When have you seen your trust broken? How did you decide the judgement was in error, despite the gap of expertise?"
Only the prospect of mental-health treatment escalating to absurdities gave me confidence to reconsider that symptoms, previously explained as perhaps just physical manifestations of mental malaise, deserved more consideration as physical signs in their own right. With trust broken like that, it's a wonder I didn't end up going full RFK Jr – I can't really blame patients who do.
Seeking out pseudoscientific care can be a rational decision for a patient if that patient's mainstream medical encounters have been so unreasonable that pseudoscience seems reasonable by comparison. Understanding the mechanisms of medicine isn't patients' responsibility. Seeking trustworthy people who claim to understand the mechanisms is. When gatekeepers who get the science right nonetheless break a patient's trust badly enough, why *would* a rational patient continue to seek care through those gatekeepers?
"That distrust of a doctor’s opinion (especially applied to women’s bodies) is partially rooted in the real ways the medical establishment has minimized women’s paid and treated healthy female bodies as in need of medical suppression."
Is "paid" meant to be "pain" here?
Anyhow, I'm pretty sure distinguishing "paid and treated" healthy female bodies from healthy female bodies that are somehow not "paid and treated" isn't what was meant.
I imagine I can come up with many instances in my own life to answer these questions, but the most specific examples to answer all three questions involve my children. To answer the third question: My oldest was born, 34w6d - needless-to-say he was tiny. And nearly 24 years ago, a preemie who was breathing on his own and other wise doing well was released from the hospital (even after a short NICU stay) weighing 4lbs 13oz. The family practice doctor we had chosen was nice enough, but long-story short, my early baby came down with pneumonia but was not diagnosed for several weeks because the family practice doctor, always seemed to assume it was something else. Between that and a never-ending parade of ear-infections and my oldest had a new pediatrician before he turned 1 (and brand-spanking new ear tubes by 13 months).
I have other examples, specifically from oldest; but that leads me to answering both questions 1 and 2, more or less at the same time. Between the above experience and another similar experience (same kid, different doctor, different state, different illness), the next pediatrician I found displayed one thing that the other doctors didn't. Humility. Our first appointment with her, taking my second child in for a check up, she looked at both my husband and I (me being pregnant with #4 at that point) and said, "I may have the degree, but I don't have children yet. You know your kids better than I do, so we'll work together."
My kids' current pediatrician has said pretty much the same thing. And it does wonders to help build trust - when they realize that they may not know everything, and it's better to listen and learn than to prescribe based on what they think they know. They acknowledge that they don't know everything about children and there is a lot I may know more than them, given I have 10 children. I acknowledge that I hated biology in high school and they're the medical professional. In the end, we put what we both know together and try to find the answers.
Of course, humility goes a long way in building trust within pretty much any relationship.
As you say, medicine is a collaborative art, and not just between doctor and patient (though that is the primary collaboration), but between all those involved in allocating scarce medical resources, which explains triage, and the continued use of treatments which are considered inferior when cost and access aren't concerns (but they usually are).
Because gynecological care is a scarce resource, reserving the extra work of fertility-sparing PCOS treatment for patients who intend to become pregnant soon is plausibly economizing. Meanwhile, pregnancy is already considered rather unhealthy for teens (at least socially, sometimes bodily, too), so having the Pill – a cheap drug that's so safe (as drugs go) it's prescribed to otherwise perfectly-healthy people merely to suppress fertility – as a first-line treatment for teens' PCOS may make economic sense. And, to be fair to the Pill, it can do more than merely create the appearance of a normal cycle. It can treat troublesome (even debilitating) symptoms and reduce the risk of certain complications.
Which patients, exactly, are economized on can reflect various biases and stereotypes ("teen girls are drama llamas", "even sick teens' medical priority is ensuring temporary sterility", "religious observance that affects medical decisionmaking is freakish superstition"), but even if impartial triage were humanly possible, economizing on some patients to reserve more resources (especially time and attention) for others would still make sense.
Not that we should dismiss the effects of "bad triage" – we shouldn't:
https://www.painscience.com/blog/why-do-so-many-pain-patients-say-their-symptoms-were-ignored.html
"One major factor in choosing to trivialize a patient is 'bad triage.' Healthcare is hard, resources are always stretched thin, and most doctors are juggling a lot of priorities and dilemmas… and so they are often keen on any seemingly legit reason to de-prioritize a patient, or at least to make them someone else’s problem (referring).... If you’re going to avoid taking some patients seriously, who gets chosen? Why, the 'difficult' and 'weird' ones, of course! The queers and the freaks and the hysterical ladies! The people with weird subjective symptoms you can’t personally relate to!"
Standing to benefit more from the care not recommended to you than the care that has been is frustrating! This frustration is a normal part of my life, and my medical needs, while above average, aren't *that* great. My latest brush with this frustration came seeking asthma care: According to current standards for asthma treatment, I'm a prime candidate for significant escalation, but documentation verifying my candidacy has proved fragile. (My body doesn't change just because a practice closes unexpectedly or my coverage changes, but the documentation of it does.) Just before that, my positive strep lab was mistakenly dismissed, resulting in reactive arthritis from delayed antibiotic treatment. And so it goes...
I suspect that most of the economizing medical gatekeepers subject me to actually makes sense (if not always to my own well-being, then to the needs of the system as a whole, which will, at times, treat my own well-being as expendable). And, when economizing doesn't make sense to individual patient well-being, patients are stuck managing the consequences as best they can, often without recourse.
To your first bolded question, I feel like we're going through the expert-judgement-versus-preferences thing with my younger kid, just diagnosed with ADHD, as we figure out what kinds of treatments/strategies to pursue. Our pediatrician (not the only expert involved, but our first contact in the matter, so to speak) has had my kids' whole lives to win our trust, and I think he did a lot of it both by living the there-are-no-stupid-questions philosophy (he's also a clear communicator without being simplistic, which I so appreciate), and also because we've gotten to see him be right before.
The best doctor I've ever met (so far) is Jonathan Flacker, who at the time was the geriatric doctor at Emory's Wesley Woods Clinic, where I took my life partner when she began having some serious memory issues. He offered his own expertise with generosity, and without hesitation in saying what he didn't know. He treated both of us with respect, wanting to know our own experiences and always taking them into account. My partner was was adamant about not wanting an MRI to help with diagnosis. Without the slightest hint of disapproval, he said cheerfully, "ok, we can go on without it,"
Between appointments, I could keep a spreadsheet log of any occurrences that might be relevant, and I could email it to him to look at before the next appointment. I could call any time to speak with his team if something urgent came up, and get help. He was the head of the geriatric department, yet his sense of humor was mainly about himself, and he never seemed rushed when with us.
I'll never forget his kindness. In an interview I read about him much later, he said he just loved to get to know older people and hear their stories. I wasn't surprised.
The anti-assisted suicide script hyperlink actually just goes to the Portsmouth Institute website (at least for me).
Thank you! I've fixed it.
First, did you read the Times piece on organ donation in Ky? Basic gist: organs are being harvested from people who are sentient. So, big example of "dont trust the medical establishment, especially when theres economic incentive to not make you better."
I think what im most curious about with maid is why people need the doctor to say yes when other ways of suicide are easy and painless? This whole frame work is so confusing and seems much more a conversation about anthropology than ethics. Why do doctors need to be involved, ever, in the self directed choice to die? I understand why doctors need to be part of surgical abortion and why we need to litigate that, but it seems all that woman in Canada wants is the shamans touch. Is not the conversation more about normalizing suicide than it is about expertise?
I saw it late last night! Horrifying.
And yes, I think MAiD is about the imprimatur of approval that the doctor gives to your wish to die, not the painlessness of the death
"When (if ever) has an expert won your trust such that you trusted their judgement over your preferences? How was that trust won?"
When I've been healthy enough for music lessons to make sense for me (they more often don't), those who persuade me to improve do so by first showing confidence in what *isn't* wrong with my musicianship. If correction merely feels like punishing me for being "bad" at music, I'm less motivated to improve: less likely to believe I *can* improve, as well as more likely to infer that I've got an instructor with incompatible musical tastes, one who wants me to be different from who I am, but not necessarily better. If correction feels like an investment in my strengths, though, I'm more motivated.
I had some formative experiences with talent punished as a perceived character defect, which may especially sensitize me to the distinction between correction as punishment and correction as investment, but I think sensitivity to this distinction is pretty normal and human.
"When have you felt that an expert actively sought your testimony of your experience to inform their judgement?"
As a patient, I've been left entirely on my own to seek out a relevant specialist – one gatekeepers spent years not even mentioning to me as an option. Upon seeking out the specialist for myself, it turned out my testimony was more-than-usually important to the specialist's conclusion. Whodathunk?!!
Just this week, I noticed another specialist, an allergist, taking extra care with the practice's local Jewish community. The allergist explained to a tech in training the option of omitting testing for shellfish allergy during skin prick testing for patients who keep kosher. I trust (or at least hope) that patients who keep kosher are still given the option of testing for shellfish allergy – that their wish (rather than the practice's judgment that kosher means never exposed to shellfish, however accidentally) dictates the omission.
"When have you seen your trust broken? How did you decide the judgement was in error, despite the gap of expertise?"
Only the prospect of mental-health treatment escalating to absurdities gave me confidence to reconsider that symptoms, previously explained as perhaps just physical manifestations of mental malaise, deserved more consideration as physical signs in their own right. With trust broken like that, it's a wonder I didn't end up going full RFK Jr – I can't really blame patients who do.
Seeking out pseudoscientific care can be a rational decision for a patient if that patient's mainstream medical encounters have been so unreasonable that pseudoscience seems reasonable by comparison. Understanding the mechanisms of medicine isn't patients' responsibility. Seeking trustworthy people who claim to understand the mechanisms is. When gatekeepers who get the science right nonetheless break a patient's trust badly enough, why *would* a rational patient continue to seek care through those gatekeepers?
"That distrust of a doctor’s opinion (especially applied to women’s bodies) is partially rooted in the real ways the medical establishment has minimized women’s paid and treated healthy female bodies as in need of medical suppression."
Is "paid" meant to be "pain" here?
Anyhow, I'm pretty sure distinguishing "paid and treated" healthy female bodies from healthy female bodies that are somehow not "paid and treated" isn't what was meant.
Thanks for catching the typo!