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> A doctor letting a patient dictate the course of assessment and determination of illness outside the "standards of care" is at best a potential waste of time

by maeil 4y ago

> A doctor letting a patient dictate the course of assessment and determination of illness outside the "standards of care" is at best a potential waste of time and money, and at worst a malpractice claim waiting to happen ("you should have known I didn't know what I was talking about!") if it turns out there patient was wrong. I'm flabbergasted. "At best" it leads to the patient's quality of life improving, the entire idea behind medicine. This kind of assumption that it can't possibly lead to any positive outcome is simply invalid. This thread itself is about cases where the doctor's assessments have failed to lead to any such improvement. At that point, they should either put their own time into considering other options, or at least be willing to engage with the patient doing so. Just saying "Well Ive tried the basic stuff and it hasnt helped, too bad, nothing else we can do" which is the most common outcome here clearly isn't the better option.

zdragnar 4y ago
You missed the end of the sentence, where the best and worst outcomes were "if it turns out the patient was wrong" Obviously, the best case scenario for any patient-doctor interaction is to have a cure in hand for whatever ails you; it wasn't even worth mentioning. That doesn't change the fact that patients are usually terrible at diagnosing themselves. > At that point, they should either put their own time into considering other options, or at least be willing to engage with the patient doing so. Not all symptoms land squarely within a single area of expertise. If a doctor is out of ideas, the best thing they can do is to refer you to another doctor, not to treat you like an experiment or encourage you to experiment on yourself. If you want to be an experiment, as others here have pointed out, the best place to go is a research facility at a university.
- mindslight 4y ago
  You do realize there is a huge gulf between being an "experiment" and the narrow rubrics of assorted "specialists", right? Like seemingly your own situation! I do understand how you have to internalize the system's reasoning if you want to get any medical care out of it. But you also have to step back and look at its constructive result - in yours it's seemingly straight up denying you the medical care you need. My own experience tells me that you should have never told the system you stopped taking the drug, which would have been less suboptimal than the situation you now find yourself in. Also that someone is seemingly supposed to just know to seek out a research facility, rather than being referred to one in the normal course of care, is a blatant failing of the medical industry no matter how you want to spin it. If I don't have any unique condition that I know of, besides wanting to bidirectionally converse with a doctor as two intelligent people, is there yet another type of place I should seek out? Or a specific situation - if I'd like to consider a drug I've heard about that I think could benefit my own medical situation (lets say metformin or provigil), where and how can I have this conversation with a doctor, getting their informed opinion rather than being summarily shot down because I dared to think about my own healthcare in specific terms? It seems like the only way to go about that under the current system would be to make the initial decision to start taking something fully on my own, obtain it from the grey market, and then just tell the doctor what I am doing and force them to work in that context rather than allow them to gatekeep the hypothetical.
  - maeil 4y ago
    I'd love to exchange thoughts with you on this. You've pretty much written down what I've been thinking for a while now and intend to do. If you're up for it I'll give you my email. > If I don't have any unique condition that I know of, besides wanting to bidirectionally converse with a doctor as two intelligent people, is there yet another type of place I should seek out? I'm thinking of looking for a good doctor who will be willing to do just that for an upfront $1k a day or so, possibly in India. Working as a team, spending the full 8 hours together, thinking, researching, looking stuff up - someone who seems it as a challenge. > It seems like the only way to go about that under the current system would be to make the initial decision to start taking something fully on my own, obtain it from the grey market, and then just tell the doctor what I am doing and force them to work in that context rather than allow them to gatekeep the hypothetical. While attempting this at the same time.

by maeil 4y ago

zdragnar 4y ago

You missed the end of the sentence, where the best and worst outcomes were "if it turns out the patient was wrong" Obviously, the best case scenario for any patient-doctor interaction is to have a cure in hand for whatever ails you; it wasn't even worth mentioning. That doesn't change the fact that patients are usually terrible at diagnosing themselves. > At that point, they should either put their own time into considering other options, or at least be willing to engage with the patient doing so. Not all symptoms land squarely within a single area of expertise. If a doctor is out of ideas, the best thing they can do is to refer you to another doctor, not to treat you like an experiment or encourage you to experiment on yourself. If you want to be an experiment, as others here have pointed out, the best place to go is a research facility at a university.

mindslight 4y ago
You do realize there is a huge gulf between being an "experiment" and the narrow rubrics of assorted "specialists", right? Like seemingly your own situation! I do understand how you have to internalize the system's reasoning if you want to get any medical care out of it. But you also have to step back and look at its constructive result - in yours it's seemingly straight up denying you the medical care you need. My own experience tells me that you should have never told the system you stopped taking the drug, which would have been less suboptimal than the situation you now find yourself in. Also that someone is seemingly supposed to just know to seek out a research facility, rather than being referred to one in the normal course of care, is a blatant failing of the medical industry no matter how you want to spin it. If I don't have any unique condition that I know of, besides wanting to bidirectionally converse with a doctor as two intelligent people, is there yet another type of place I should seek out? Or a specific situation - if I'd like to consider a drug I've heard about that I think could benefit my own medical situation (lets say metformin or provigil), where and how can I have this conversation with a doctor, getting their informed opinion rather than being summarily shot down because I dared to think about my own healthcare in specific terms? It seems like the only way to go about that under the current system would be to make the initial decision to start taking something fully on my own, obtain it from the grey market, and then just tell the doctor what I am doing and force them to work in that context rather than allow them to gatekeep the hypothetical.
- maeil 4y ago
  I'd love to exchange thoughts with you on this. You've pretty much written down what I've been thinking for a while now and intend to do. If you're up for it I'll give you my email. > If I don't have any unique condition that I know of, besides wanting to bidirectionally converse with a doctor as two intelligent people, is there yet another type of place I should seek out? I'm thinking of looking for a good doctor who will be willing to do just that for an upfront $1k a day or so, possibly in India. Working as a team, spending the full 8 hours together, thinking, researching, looking stuff up - someone who seems it as a challenge. > It seems like the only way to go about that under the current system would be to make the initial decision to start taking something fully on my own, obtain it from the grey market, and then just tell the doctor what I am doing and force them to work in that context rather than allow them to gatekeep the hypothetical. While attempting this at the same time.