ysabetwordsmith | Doctors Don't Listen

From:

supergee

Blogging this, thanx

From:

ysabetwordsmith

I'm glad I could help. There are scads of articles on this topic. Usually they do like this and pick a specific group getting screwed. But when you connect the dots, it basically says "Doctors don't listen." There are some who do, but the pattern is that they don't.

From:

gingicat

And people with the wrong vocabulary — I, a woman who carefully does her research, gets more respect than my husband, who goes in with aches and pains but describes them poorly and frequently doesn’t follow up on referrals. (I’ve told him to ask for the fibro blood test; he didn’t go to get it when he got the referral.)

From:

ysabetwordsmith

That works great until your vocabulary exceeds that of the experts, and then they go apeshit. I had to train myself not to hack the Latin or Greek out loud because it turns people vicious. And when I get to describing things in detail, often I find that my diagnostic ability exceeds theirs -- I'm looking for divergence points they're not even tracking.

From:

fred_mouse

Link won't work :{. This is not you -- they are location spotting, and redirecting me to my local site, which doesn't appear to have the article.

From:

technoshaman

ProtonVPN Free to the US...

Jerques. I *hate* it when they do that.

From:

fred_mouse

Thank you. And yes, bloody annoying is what it is.

From:

lilly_c

That's the same here with some doctors. I've had quite a few experiences like the ones in the article.

I only ever go to a doctor when I'm sick (which is rarely) and self-medicating isn't effective and at that particular appointment I was sick and in pain and it took some convincing of that for the doctor to prescribe painkillers and also agree to a referral to hospital for an ultrasound. At that same appointment I got asked by the doctor if I was only going to them every few months just for painkillers, I know that it happens but I wouldn't do it.

From:

librarygeek

I had open heart surgery last year. I stopped taking the prescribed opiates when the pain got to tolerable levels for me, so I have some pain meds when the dysmenorrhea, ovarian cysts, and endometrial problems are at intolerable levels.

Because even while acknowledging that's probably horrible levels of pain, (See: recent article about cramps being more painful than a heart attack for some people with uteri), no doctor around here will give me pain meds to get through one or two days every 3 months. :-( Perimenopause is horrible and I had previously diagnosed hormonal and genetic conditions that contraindicate any hormones. :-(

Hugs virtually, on your issues, and your last sentence is actually a required question for doctors to ask now when prescribing painkillers. My doctor showed me their list. A friend of mine has a chronic pain condition and has even more hoops to get her meds. :-(

From:

ysabetwordsmith

>>Because even while acknowledging that's probably horrible levels of pain, (See: recent article about cramps being more painful than a heart attack for some people with uteri), no doctor around here will give me pain meds to get through one or two days every 3 months. <<

And then they wonder why people cache prescriptions, or self-medicate with things that doctors wish they wouldn't use. Because if people follow the advice, they don't get their needs met, and people don't like to be left hurting. They'll quit using a solution that doesn't work and look for one that does.

>> your last sentence is actually a required question for doctors to ask now when prescribing painkillers. My doctor showed me their list. <<

I have noticed that, over time, the amount of information demanded by medics across the board is increasing, it's getting more intrusive and offensive, and the appointment time is decreasing. So someone else, neither you nor your doctor, decides how to spend most of the now very limited time that's supposed to be used for fixing the problem you actually came in for. And it destroys trust. It doesn't take much for people to realize that many of the new questions are boobytraps -- most of them have answers that are dangerous to give, even if true. They're bait-and-switch. They'll ask about depression, but then a lot of health plans have little or no coverage for mental care. They'll ask about pain, and if they don't like your answers, call the cops on you. So people have less time to talk about their problems even if they want to, and more incentive to lie or refrain from speaking. Then problems are less likely to get solved.

>> A friend of mine has a chronic pain condition and has even more hoops to get her meds. <<

Yes. You have to trade away your civil rights to get high-level pain control anymore, if you can get it at all ... legally. But the illegal stuff is cheaper and more accessible. As the opioid epidemic indicates, people don't want to be in pain and will do pretty much anything to avoid it. So to stop that from causing a problem, you have to come up with a solution that is better -- safer, cheaper, more accessible, more effective, etc. When the illegal supply is beating the legal supply on multiple counts, tightening access to the legal supply literally forces people from safer to more dangerous methods. This is a problem if your goal is to improve health, although not if your goal is to fill prisons. Or coffins, given the collateral effect on suicide rates.

From:

ysabetwordsmith

At this point, if you mention pain or ask for painkillers, it reduces the chance of you getting any. Lawmakers are more concerned about preventing people from breaking the law than in making sure people get health care. The result is that health care is less and less effective, which pushes people into other ways of getting their needs met, which tend to be less legal and more dangerous. And then society wails because epidemic addiction is now everybody's problem.

From:

cmcmck

Given the condition I was born with- PAIS- which was entirely missed in my childhood, I soon found that I knew more than the doctors because I'd bothered to find out, and they seemed to insist that they knew altogether more about gender and what it meant than I did, even though I was the one living in the rather confusing body!

From:

ysabetwordsmith

Exactly. That's the argument from authority fallacy: that they know more "because they're doctors" than anyone else possibly could. Lived experience has no value to most of them.

But for anyone with a less-common condition, or a quirky body, that means basically you can't get health care because nobody wants to admit you or your issues even exist. They'll tell you never to share prescriptions because it's dangerous to take medicine meant for someone else -- but they'll treat you like a textbook body that bears minimal resemblance to the body you're actually wearing. It amounts to the same thing.

From:

technoshaman

In other news, he says grumpily, water is wet. Finding a practitioner who actually *listens* is rare. Finding one that isn't hamstrung by the law, and I don't think it's just the US, is even worse.

From: (Anonymous)

Even if you have a fantastic practice who listens to you, the amount of legal hoop jumping that practice has to do to find a solution agreeable to the patient and not cost prohibitive can be gigantic and frustrating. The insurance companies can choose to approve or deny solutions at whim at any point in a process. One year a medicine will be covered and then denied every other month, or the approved quantity to dispense changes so that it requires prior authorization paperwork for each fill, or the appoval hinges on a test that will do nothing to help the practitioner to diagnose or treat the person's conditions. Even if a treatment is covered and doesn't require navigation of a sea of red tape sometimes out of pocket cost to the patient for any approved treatment is extremely high, higher than anyone can reasonably pay out of pocket.

From:

ysabetwordsmith

Yes. Insurance companies are parasites. There is nothing whatsoever reassuring about them. They bait and switch routinely. There is an inherent conflict of interest between a company that wants to keep all the money it sucks in, patients who want health care, and doctors who want to do their fucking job. Unsurprisingly, America's health is declining as a result. It's evil.

From:

gatheringrivers

oh lordie I could rant about this for MONTHS!

The amount of time I spent arguing with doctors on behalf of my late best friend, the amount of doctors who flat-out ignored HER - the PATIENT - and talked just to ME, the amount of "you're just drugseeking" attitudes....

I have to smack down about half a dozen med student manuals on the table before they realize "oh shit, she really DOES have a clue".

Flip side of this is....

...I've read some of the absolute horror stories in Reddit threads that are along the lines of "Medical professionals of reddit: what nightmare patients have YOU dealt with?"

One memorable (and safe for brains) patient anecdote was a middle aged woman who apparently (ah....to be polite) dind't understand how menstruation worked. Doc had to explain this to a MIDDLE AGED woman! I really fear for our educational system...

Because of that, I know sometimes the patient is an idiot too.

But when the patient is speaking on their level, the time to treat them like an idiot effectively SHOULD stop right there. And it often doesn't, which leads to a lot of angry patients and a lot of non-compliance with medications (because if they're not listening to the patient, how can the patient be certain they got the right drug for the problem...)

It's kinda sad when my "trusted medical professional" is not one who can prescribe anything. But at least he knows *I* have a brain. :)

From:

ysabetwordsmith

>>One memorable (and safe for brains) patient anecdote was a middle aged woman who apparently (ah....to be polite) dind't understand how menstruation worked. Doc had to explain this to a MIDDLE AGED woman! I really fear for our educational system... <<

Well, most people don't have ulterior access to information, they rely on someone else to teach them. So if that information is not furnished in a person's school or community, most of them won't have it. The doctor's responsibility is then to explain, or refer them to suitable resources elsewhere. Treating the person like an idiot will not help the situation, even if they are missing major pieces of information. Because if you pick on them for it, then they'll try to hide what else they don't know, which undermines effective communication and any chance of filling other gaps.

>> But when the patient is speaking on their level, the time to treat them like an idiot effectively SHOULD stop right there. And it often doesn't, which leads to a lot of angry patients <<

The thing is, this is very easy to test. What vocabulary does the person use? How precise are they? How much detail can they give? How well do they know the condition(s) at hand? It's easy to distinguish people who know what they're talking about. But doctors don't want to admit that's even possible. They feel threatened by patient knowledge. Because very often, it confirms a deep fear that most of them have -- they're not really practicing medicine anymore, they've been reduced to a drone who does paperwork.

>> and a lot of non-compliance with medications (because if they're not listening to the patient, how can the patient be certain they got the right drug for the problem...) <<

A patient CANNOT be "noncompliant" unless they have been legally ruled incompetent. The patient has a legal right to choose or refuse treatment. They make the decision. The doctor gives advice, not orders, unless the patient chooses to delegate a decision. Therefore, if a patient decides to try a new drug and concludes that it doesn't work, is too expensive, has side effects that render them less able to function than the original complaint, etc. and decides to stop taking it, that's not noncompliance. It's changing their mind about what treatment is suitable, which is their legal right. Calling them noncompliant means the decision belongs to someone else whom they are disobeying. They're not disobeying; they can't; it's their body and their decision. The whole noncompliant thing is insulting. But it's how the medical industry thinks: they don't believe you have a right to your own body. They just want to do things to you and wish you'd shut up and pay them without arguing.

>> It's kinda sad when my "trusted medical professional" is not one who can prescribe anything. But at least he knows *I* have a brain. :) <<

Well said.

From:

gatheringrivers

Therefore, if a patient decides to try a new drug and concludes that it doesn't work, is too expensive, has side effects that render them less able to function than the original complaint, etc. and decides to stop taking it, that's not noncompliance.... Calling them noncompliant means the decision belongs to someone else whom they are disobeying.

This is exactly mom-in-law's doc actually IMPLIED, though! Actually "fired" her from the doctor's practice because "she wasn't seeing reason", and gave her panic attacks for a WEEK because Doc Asshat implied she'd have to find a new pulmonary doc too. I listened in on those phone calls, and where mom was meek and not wanting to fight, I bit back. A LOT. Because I was taking care of her and could see the difference before and after with the statin drug in question.

Pretty much all of my late-best-friend's (temporary, because she didn't put up with shit either) doctors who used the term threw it around in a similar manner to mom's, so my primary experience with context is in a "patient isn't doing what they're told" expression.

(I really must look this term up later, there might be legal definitions I was unaware of at the time of all the medical drama...)

From:

ysabetwordsmith

>> my primary experience with context is in a "patient isn't doing what they're told" expression. <<

Exactly. Doctors think they're in charge. They're not. They're hired help. They have no right to make any decisions unless told to do so by a patient. Certainly they have no right to harass or blackmail a patient, but the system pretty much relies on them doing that in order to accomplish anything, because explaining things is work they don't want to do. They don't care about you. They only care about your money.

>> (I really must look this term up later, there might be legal definitions I was unaware of at the time of all the medical drama...) <<

That's possible.

From:

mama_kestrel

I go to medical appointments with my best friend, who lives 150 miles away, because she will be dismissed as "drug-seeking" otherwise. I can say flatly "No. She is not. She does not exaggerate, she minimizes. If she reports pain at level 8, anyone else would have passed out half an hour ago. Don't look at your screen, look at her." I can put enough force behind the words that they do. They also listen when I start listing observed symptoms in temporal order, where you can just see them discounting by 50% when she does the same thing. She lives in that body, not me! But she's a middle aged woman, so half of it must be hysteria and attention seeking, right? That should have died in the 19th century, but it very clearly hasn't.

From:

ysabetwordsmith

>> I go to medical appointments with my best friend, who lives 150 miles away, because she will be dismissed as "drug-seeking" otherwise. I can say flatly "No. She is not. She does not exaggerate, she minimizes. If she reports pain at level 8, anyone else would have passed out half an hour ago. Don't look at your screen, look at her." I can put enough force behind the words that they do. <<

Good for you.

Yeah, my scale is bent too. Between a quirky body and farmemory of some truly exceptional deaths, I just tune out a lot of things. Sometimes this alarms people. But I really like the pain scale that describes *concrete* effects and where 10 is losing consciousness. That's so much more useful than "worst pain imaginable."

>> They also listen when I start listing observed symptoms in temporal order, where you can just see them discounting by 50% when she does the same thing. She lives in that body, not me! But she's a middle aged woman, so half of it must be hysteria and attention seeking, right? That should have died in the 19th century, but it very clearly hasn't.<<

And then they wonder why there's a drug problem. Because if you go to a drug dealer and say, "I need some pain relief," they're like "Sure man, that'll be $5, have a nice trip." The quality is lousy, but it's accessible.

From:

janetmiles

Yeah, my scale is bent too. Between a quirky body and farmemory of some truly exceptional deaths, I just tune out a lot of things. Sometimes this alarms people. But I really like the pain scale that describes *concrete* effects and where 10 is losing consciousness. That's so much more useful than "worst pain imaginable."

And sometimes doctors have to deal with stupid people like me, who have no imagination whatsoever; I have to base my scale on the worst pain I can remember because I can't imagine anything. So they get, "It's about a three, where ten is getting the hiccups with three broken ribs and whiplash." That annoys them, and rightfully so.

From:

ysabetwordsmith

That sounds like a smart process to me. It's what I used before I found the pain scale that lists practical impacts. I still use comparatives sometimes. Not sure why people don't like it, but then, doctors are often creatures devoid of sense.

From:

librarygeek

My cardiologist didn't understand the extent of my anxiety levels last summer before the surgery until I did take a friend in to one of the appointments. They asked what are you doing with our patient today? He bluntly told them keeping S from bolting because she's been terrified of this long awaited surgery for DECADES. When my EKG backed that up, the doctor and nurses started being much more kind to me.

From:

ysabetwordsmith

It sucks being dependent for your survival on people who can't be arsed to treat you like a human being who is capable of making factual statements.

From: (Anonymous)

This also applies for those of us with already chronic conditions. I’m a Type 1 Diabetic, and I once went into the doctor for a skin-based Staph infection. The first thing the doctor says is “well, someone hasn’t been controlling their blood sugar well, have they?” I was so taken aback I didn’t think to walk out. I explained to her that no, my blood sugars were well within “good” range for a Type 1, and they had been for years. And that my sister came to the same doctor the previous week for a Staph infection as well (she was on Spring break from college, the doctors are pretty sure she brought it home with her).

Not everything is about, or related to, my condition. If I break a freakin’ bone, are you still going to assume my blood sugar numbers are bad? Stop under emphasizing the symptoms I present with as related to my diabetes, when it’s an entirely different issue.

I also sometimes struggle with the “knowing too much terminology” bit. Not only do I know more about Type 1 than most doctors, I’m a biology student, and a naturally curious human who hordes random knowledge like a dragon with gold. But, I’m also not afraid to speak up and call bullshit on someone, even a doctor. I’m paying you to have compassion, listen to my symptoms, and treat them correctly. I tell my friends I will go to their appointments with them if they need someone to speak up. I think everyone should have that, until we fix our broken system at least.

From:

ysabetwordsmith

That's a vicious and unhelpful thing to say, but typical of the unprofessional behavior I've seen from doctors. They can't be arsed to do their job, just look for the easiest explanation so they can get rid of people. It's appalling.

From: (Anonymous)

not only to patients sometimes even to each other, my sister was dealing with a pain issue and went to a specialist the specialist recommended her primary put her on meds for fibromialga it was written in his notes and we asked the doc changed the subject twice.
so frustrating

From:

ysabetwordsmith

That really sucks.

One thing I've found helpful: demand that they put it in writing, with their name and date on it, and rationale for the decision. At least then you have documentation. Usually they'll refuse -- but sometimes it makes them change their behavior. Also, if they refuse to document it, you can file a complaint based on that, because most places nowadays have a giant fetish for paperwork.

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