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I would imagine a lot of the concern over this is more of the existential fear resulting from the balance of power between patient and doctor than anything else
by SoftwareMaven 12y ago
I would imagine a lot of the concern over this is more of the existential fear resulting from the balance of power between patient and doctor than anything else. The Internet started that, with patients able to become much more knowledgable about their own conditions (with the unfortunate side effect of every symptom being cancer).
Once patients become knowledgable, the doctor moves from a pillar of all knowledge to a (hopefully) trusted, knowledgable advisor. That change frightens many in the medical community[1], but it will yield better outcomes.
My own story is one of overcoming obesity and, at times, nearly crippling depression using that ability to gain knowledge to learn how to feed my body. In the process, I've stopped medications and have had to teach my doctor certain things (like why I'm not gong to either worry about my cholesterol or take any drugs for it).
The medical community currently has an abysmal record with treating chronic health problems. There are a lot of reasons for that, but, IMO, the most glaring is people abdicating their health reonsibility to somebody else (whether doctors, pharmaceutical companies, or government guidelines). As people take control back...when they realize they have some control...they will become more healthy.
1. Source: my wife is part of that community and sees it regularly.
- chimeracoder 12y ago> My own story is one of overcoming obesity and, at times, nearly crippling depression using that ability to gain knowledge to learn how to feed my body. In the process, I've stopped medications and have had to teach my doctor certain things (like why I'm not gong to either worry about my cholesterol or take any drugs for it). > As people take control back...when they realize they have some control...they will become more healthy. Your story is great, and a good example of the upside of patient control and involvement in care. However, the downside also exists, and is very real. For some patients, having control over their care means demanding unnecessary tests and treatments, which leads to phenomenal increases in costs to the insurer and/or provider, as well as a reduction in compliance with medication and treatment regimens[0] - this has implications both for public health and the patient's own health. Or, worse, demanding medications that they think are helpful but are actually harmful (this happens all the time). The problem is that control isn't very meaningful without an appropriate level of knowledge to supplement it, and even when the resources are available, very few patients are willing to take the time to educate themselves to the extent necessary to make informed decisions about their own care. > Once patients become knowledgable, the doctor moves from a pillar of all knowledge to a (hopefully) trusted, knowledgable advisor. That change frightens many in the medical community[1], but it will yield better outcomes. To be blunt, it's more likely that the doctor will move towards being the person who enacts the wishes of the insurer (or whichever entity is acting as the insurer). This isn't a particularly bold prediction - it's already happened, in that doctors are increasingly beholden to the pressures of insurers. Once you take into account the massive costs that arise from mismanagement of long-term conditions (whether from the patient or the doctor), it's not hard to understand why insurers are taking increasingly active roles in patient care. [0] This isn't always bad, but think of diseases which require adherence to antibiotics (or, worse, diseases like HIV, which are chronic and for which compliance is a matter of public health) and you'll see why this can get problematic very quickly.
- SoftwareMaven 12y agoThe problem you describe is an economics problem. Doctors and patients are shielded from the costs associated with their health care. Having insurance act as a group savings plan is catastrophic for all aspects of healthcare. If, on the other hand, people were paying out of pocket for those tests, who cares? What is the downside of a person being more knowledgable and involved? Unfortunately, the ACA took a step in the wrong direction by hiding more costs from the consumers. If we want a healthy health care system, we need price tags (and insurance for catastrophic events!).
- DanBC 12y ago> What is the downside of a person being more knowledgable and involved? More tests does not mean more knowledgeable. It just means the patient has more noise to either listen to or ignore. That has consequences: stress from some test result; taking action based on a test result when there's nothing wrong; and so on.
- SoftwareMaven 12y agoI completely agree with you. I'm pretty picky about what tests I'll take for exactly that reason: stress is dangerous to one's health and many tests have abysmal false-positive rates. My hypothesis is that people, on balance, would be healthier if they took a more active role in their healthcare. I've seen it in a lot of people's lives, but there is a strong confirmation bias there. You don't see the people that tried and wound up worse off. Fortunately, this is easy to study. We could find an answer to whether people are better off, and, more importantly, how to ensure they are better off.
- pyre 12y agoWell, I can think of one downside to just giving the demanding people what they want: over-use of antibiotics creating 'super' strains of bacteria. (I realize that you're specifically talking about tests, but I see tests as just an example of the, "I know better than the doctor," people.)
- carbocation 12y ago> In the process, I've stopped medications and have had to teach my doctor certain things (like why I'm not gong to either worry about my cholesterol or take any drugs for it). People have many values, one of which is health. Deciding not to worry about cholesterol may fit with your value system, but is unlikely to benefit your health. As a doctor, it would be reasonable to try to convince you of the benefit of caring about cholesterol, and then working with you to improve your health along the axes in which you are interested in making changes. If cholesterol is not one of them, that shouldn't sever the remainder of the therapeutic relationship. In other words, your physician may have recognized that global optimization sometimes requiring abandoning local optimizations (such as cholesterol control, in this case). Obviously I don't know anything of the specifics of your case, but yours is an interesting comment.
- XorNot 12y agoOr to go another way: doctor's get paid on throughput, and at some point it's not worth the effort to keep arguing with the patient, provided you can show in your records you did advise them repeatedly that they were making an inadvisable decision.
- SoftwareMaven 12y agoOr I've done enough research to see what is correlation, what is not, what actually correlates and what does not. Total cholesterol has zero predictive power (2/3 of heart attack sufferers have below-normal total cholesterol), yet that number is used as a marker for prescribing "treatment". That doesn't mean there aren't numbers with value in your blood. Triglycerides, HDL/LDL ratio, and LDL type have some predictive values, so I pay more attention to those. I would encourage nobody to trust me at my word, though. Do the research. Take control of your own health. It's ok to disagree with your doctor.
- nmjohn 12y agoI'm going to give you the benefit of the doubt, being that you are sufficiently educated to comprehend the studies you're reading - both biology and statistics - and have actually invested a non-trivial amount of time ensuring you're actively trying to seek information to disprove your hypothesis rather than the alternative. (ie. You're looking for research suggesting that cholesterol has significant predictive power as opposed to looking for research just confirming what you already believe.) [0] And under those conditions, I agree with you! Get involved with you health and engage in discussion based dialog with your doctor, and push harder if you don't agree. The healthcare system in this country may be incredibly screwed up, but at the end of the day most doctors are incredibly intelligent and if you have information suggesting they are wrong they very much would like to hear it. (Though like the rest of humans, some of them let pride and ego get in the way of rationality.) However, the fact of the matter is the kind of person I described makes up a fractional percent of our society. Most people are not even close to being able to do that. Even if they could comprehend the biology, statistics are hard. Most people are incredibly naive and arrogant with their regard to their comprehension of statistics (probably myself included), which is why they are so powerful in misleading people. Ex: "A and B have a strong correlation so you should do C" - when in fact the correlation's r value is 0.3 and the correlation described was more likely random noise... but there is a correlation! [1] Thus it is important to keep in mind general population when considering the effects of changes impacting more than yourself. If our healthcare system demanded we take more control of our own health, there is a small group of people who would be greatly benefited, but there is a much larger group who would suffer. [0]: If that came across in an attacking manner I do apologize as that isn't my intent. My thoughts are much less about your specific case rather society as a whole. [1]: Just to clarify my thoughts, I'm not suggesting most people are not intellectually capable of acquiring the knowledge to do any of this - It's not like it takes a special kind of super genius - most people simply just have not acquired the knowledge and thus are incapable for that reason.
- shortstuffsushi 12y ago> The medical community currently has an abysmal record with treating chronic health problems. Could you elaborate on this a bit more? What sort of 'chronic health problems' are you referring to, and what is it that the medical community is failing to provide (short of cures, presumably)?
- SoftwareMaven 12y agoDiet is the underlying cause of (or major contributor to)[0] the vast majority of heart disease, type 2 diabetes, many kinds of cancers, kidney and liver disease, auto-immune diseases, and probably Alzheimer's and other neurological conditions. There is research backing up diet-based interventions that positively impacts or cures all of these, but instead, patients are given pills that are barely palliative. That diet plays this role is not, of course, a surprise to anybody. The failing that I see is that every medical body has chosen to follow the "everything in moderation" line[1] instead of addressing the health needs of millions of people. The diet being promoted by these organizations is causing these problems. Imagine a world where the AHA, the ADA, the AND, the AMA, the IoM, and every other health organization came out strongly in favor of a science-based diet[2]. When you went to your family practice physician, your endocrinologist, your dietitian, or whomever, you would hear that diet is the very best treatment, and you would hear specifics on what foods you should avoid, what you can safely partake in, and what might or might not work for you, depending on you[3]. I'm not naive enough to think this would solve all of our problems, but the amount of crap food being eaten under the guise of "everything is OK in moderation" is, literally, killing people. You go into a dietitian's office, and they are advertising sugar-filled crap whose only nutritional benefit has been added during the processing. You go into a doctor's office and food is never mentioned, but you see 85 advertisements for the various drugs that will "manage your condition". That is fundamentally the wrong approach to these problems. I think we had so much success with treating infectious diseases in the 20th century, that we believe anything can be cured with a pill or a needle prick. Unfortunately, a lifetime of bad inputs cannot be fixed that way. 0. Unfortunately, truly proving causation is very difficult here, and it is possible that there may be other causes but the lack of proper nourishment is preventing the body from healing the damage caused elsewhere. But if a diet can prevent and/or heal them, that is good enough for me right now. 1. It's hard to believe that it's not because of the millions of dollars in contributions given by companies whose food is making people sick or by the companies who provide drugs that provide said barely palliative care. Government policy also plays an important role here, and that policy is heavily shaped by lobbying. 2. Believe it or not, there are a lot of good studies that aren't epidemiological that provide pretty clear insight into what the foundation of a good diet is. This would likely have to be customized for individuals and circumstances, but that doesn't happen. 3. I'm not going to list these here because it will derail the conversation. PM me if you are interested in hearing them.
- jasim 12y agoQuote from Kaplan's Clinical Hypertension medical text: "The practitioner must take direct responsibility for the individual patient. We know of nothing more helpful in achieving good control of an individual patient's hypertension than the home monitoring of BP. In the best of worlds, the patient could alter his or her antihypertensive regimen based on his or her home BP readings just as diabetics are allowed to alter their insulin dosage based on their home glucose readings. Such self-modification may be too much to ask, but phones, faxes, and e-mails can easily send the readings to an office assistant or practitioner who can then provide appropriate advice. For too long, practitioners have kept patients out of the loop, either too proud to give up some of their power or too suspicious of the ability of their patients to help themselves."
- poof131 12y agoI feel your sentiment. I’ve had a love hate relationship with the medical community. It took two plus years for a diagnosis of Celiac’s. Along the way, I met a number of doctors who took the attitude that if they couldn’t figure out what was wrong, it must be in my head. And while these docs made me want to crack skulls, I also came across a number of great doctor’s with empathy, knowledge, and an understanding that their knowledge is not infinite. It’s a tough job, and after that many years in school, it’s tough to be humble. It was my step-brother, a Cardiologist, who recommended against my second endoscopy that led to the diagnosis and the transformation of my health. Like my XO in the Navy said, ‘Only you are responsible for your career.’ It applies to medicine as well, ‘Only you are responsible for your health.’ Especially with anything chronic that may be outside the 99.9% bounds that modern medicine is designed to handle well.
- kamaal 12y ago>>I met a number of doctors who took the attitude that if they couldn’t figure out what was wrong, it must be in my head. I hear you. I went through a very similar phase a few years back here in India. It turns out it was just a simple infection being dragged around by my doctor just to keep the consultation fees coming. It took a little internet research and a change of doctor to get the problem resolved. In another case a wife of a colleague suffered from a serious health issue. Turns out the doctor did everything to delay the actual treatment to keep the expenses high. After a little research and catching the doctor in the act, the doctor yelled at them telling that was how he deals and they can go to a different doctor if they wanted. A new doctor was able to get the situation under control and get the issues resolved pretty quick. We need to understand that at the end of the day its just a business, and they just tend to optimize what works for them.
- jacquesm 12y agoIs there a review site for doctors? It would seem to me that such blatant profiteering at the expense (both health and moneywise) of patients ought to be exposed.
- 12y ago
- smanuel 12y ago> There are a lot of reasons for that, but, IMO, the most glaring is people abdicating their health reonsibility to somebody else (whether doctors, pharmaceutical companies, or government guidelines). As people take control back...when they realize they have some control...they will become more healthy. I couldn't agree more. I've blogged about this some time ago (shameless plug) "We need to start taking care of our health data": https://medium.com/@iamhealee/we-need-to-start-taking-care-of-our-health-data-789827fd148 https://medium.com/@iamhealee/we-need-to-start-taking-care-o... But responsibility and control is only one side of the coin. There are numerous problems which are happening behind the curtain and people normally don't care about (EHR software compatibility, sometimes lack of EHR software, different attention to detail when doctors record the health data, etc.)
- jghn 12y agoI 100% agree with [1]. I used to work with a group of MDs and the paternalism was shocking. While not universal, many of them relished the role of oracle on high and were uneasy with any change which would take them off of the top of that pillar. On the actual topic at hand, my last doctors office had a system where I could see everything they wrote on a web portal and it was eye opening. The number of times I'd say X and they'd write Y was astounding. It was primarily the nurse and not the actual MD but I learned that I needed to be very careful about everything I said as the image of me that someone would have if they only read those notes was nearly the opposite of what I was trying to convey.
- mcguire 12y agoWeirdly, I've found the same thing but primarily with general practitioners. I started going to internal medicine specialists (Asthma, don'tyaknow) and have had much better treatment.
- madaxe_again 12y agoDoctors absolutely hate knowledgable patients, from what I can tell, however. I've just spent two years begging for an ultrasound because I've strongly suspected I have gall stones - and my GP has consistently rebutted me, and has written stuff like "hypochondriac" in my notes - he left the room, didn't lock his computer. Tut tut. I initially tried playing totally stupid and letting them reach their own conclusions, but they just kept going "norovirus". When I then started talking about Murphy's sign, cholecystitis, why this lead me to think gall stones - they responded with a complete shut-down, get out of my surgery, type affair. Went abroad. Got an ultrasound. Severe gallstones. Took them back to my GP here, they refused to even look at them. About to go abroad again to have a cholecystectomy. So. Educated patients - if this is to help healthcare, doctors have to be on board too, and I don't think they ever will be, as an informed patient is viewed as a threat, as you say.
- Someone1234 12y agoMaybe you should file a complaint with the medical standards board, sounds like you'd have a valid case if this story is true. Although I'm assuming you're in a country where you'd have a medical standards board or some kind of complaints procedure, which not all have...
- madaxe_again 12y agoI'm in the UK - it's straightforward to complain, but nothing comes of it, apart from even shittier treatment the next time around, because they know you've complained about them!
- travem 12y agoSounds like your GP sucks, have you tried a different one?
- madaxe_again 12y agoSeveral, over the years. My favourite was the one who threw a mop at me for blacking out and bleeding all over her surgery, and then gave me a sticking plaster for my very obviously very infected wound. Ended up in an ambulance to hospital the next day with a brain-cooking fever and sepsis. She was fired - but didn't lose her license.
- mewop 12y agoPhysician here. I personally believe patients should do their own research, up to a certain point. There is a reason physicians have tens of thousands of hours of training. We quickly learn medicine is rarely black and white and straight from the textbooks. The art of medicine is a skill that takes a lifetime to develop, and is still not perfect. Sure, you can search pubmed for the best therapies, but patients often don't know how to fully interpret a study. Was there enough power? Does the patient fit the studied population? Are the primary endpoints significant in this scenario? The knowledge is out there, but dangerous in the wrong hands. Its generally a subpopulation of patients that give a reasonably self informed patient a bad reputation. Many patients (especially in the low income brackets) treat their physician like a McDonald's drive through. I want this, this, and this and I don't care about your extensive training and clinical judgement.
- JoeAltmaier 12y agoWhich sets us up for the anecdotes posted elsewhere on this thread. Doctors become cynical, discount every patient's questions and ideas; patients with real problems get ignored; HN fills up with horror stories. Do you have a solution in mind?
- x1798DE 12y agoI honestly think this "I want this, this and this" comes down to how we infantalize adults in modern society, and how that comes out in the way that we pay for healthcare (insurance or social programs rather than out of pocket) and in the drug war. About half the time I go to the doctor, I already know what I want (i.e. not for diagnostic reasons) and if I could get it and at least try it out without a prescription, I wouldn't need to waste my time and the doctor's time. Sometimes I don't know what's wrong with me and I actually do want to utilize the doctor's diagnostic skill, but that's not always the case - the same is true when I visit a mechanic, sometimes you already know you need an oil change and a tire rotation or whatever. Yes, people might make the wrong call about their health sometimes, but that's not the doctor's concern - they're adults, not infants, they've earned the right to make their own mistakes.
- nathan_long 12y ago> The Internet started that, with patients able to become much more knowledgable about their own conditions ... or more deluded. I've heard of patients telling doctors that vaccines cause autism, fluoride causes impotence, etc. Because, you know, the internet said so. People who can't say what major body parts do should not tell doctors how disease processes operate. I'm not saying you are deluded, but it seems common.