Talking to doctors
July 29, 2021 12:59 PM   Subscribe

I am on, idk, year 8? 10? Of having to advocate for myself and others in the Ontarian healthcare system. I know you get more flies with honey etc., but I am past it, I have no patience anymore for arrogant or burned out doctors and lazy office staff and zero resources anywhere. Tell me how to talk to medical staff in a way that will get them to do their jobs.

I probably sound arrogant myself. But I am physically sick of hearing things like

- “well, he’s old, old people get ‘dementia’” (about my dad, with NO interest in following up with scans or even medication. Just found out he actually was DISCHARGED by geri psych in DECEMBER and NO ONE TOLD ME [have POA].)

- “well, half the city has hashimoto’s, we don’t do anything about that” (about my boyfriend)

- “well, we don’t know why you’ve had paresthesia for yay many years, don’t want to look into it and have nothing to offer you” (for me and my ceaselessly burning feet)

I have brought in papers, no one is interested, they don’t do those tests in Canada, no one thinks my dad is worth a neurologist’s time, etc etc etc, like I am DONE with the wall of “fuck you” I meet everywhere. Yet I am forced to depend on this system and those individuals.

Bearing in mind that I’m past frustrated, and of course Covid has ruined everything anyway, how do I get doctors and reception staff and techs to do their jobs. (Literally have had to chase down reports that sat on someone’s desk for three months.)
posted by cotton dress sock to Human Relations (15 answers total) 7 users marked this as a favorite
Best answer: This is probably not that helpful, but calling really often or just continuing to book appointments while being faultlessly nice no matter how awful they are each time can sometimes get stuff done.

This is completely impossible at least in Vancouver where I am, but if there is any way at all to get a different family doctor it might get you somewhere.

If you research and ask around about potential specialists and then ask them to refer you to a specific one that might be harder to say no to.

Generally though, I think it's fair to be extremely frustrated about the system. It works great if you are very sick, but for stuff like this it can be really awful.
posted by lookoutbelow at 1:11 PM on July 29, 2021 [2 favorites]

Best answer: I'm sorry you're having this experience. I think that talking about things in terms of functional impairment sometimes helps doctors more concretely conceptualize the extent of the problem. You sound like you are at your wit's end, so maybe you've already done this, but in case you haven't, some examples might be:
"My dad was able to read a newspaper just six months ago, and now he cannot even remember his own address and he got lost"
"The pain in my feet is making me unable to go hiking with my family"
Seeing a female doctor, as a female patient, might also make for a slightly less dismissive experience.
posted by gemutlichkeit at 1:12 PM on July 29, 2021 [16 favorites]

I believe you wholeheartedly and I know you're not being arrogant. I have faced this myself, as have my chronically ill and aged family members. It is maddening. The only way to get anywhere is to hound them and get second, third fourth opinions. Honey doesn't work, they see you as easy to manipulate. It is so so so tiring and shouldn't be necessary. I have gone to regulatory colleges, hospital ombudsmen, and hospital administrators trying to sort things out and hold people accountable. They all protect each other. It is utterly exhausting.
posted by Stoof at 1:20 PM on July 29, 2021 [4 favorites]

Best answer: In my experience it helps to try to get them to focus on the actual problem you're experiencing rather than the diagnosis. They hate hearing about diagnoses of any kind in any context and it gets them all in their heads and then they don't come out. Instead you have to keep the focus of the conversation on actual things you can do. And unfortunately that also means that you also have to be prepared with ideas of your own because them not having any ideas is what they think gives them license to send you away. But if you have your own ideas of things you can try, at least it gets them talking and thinking.
Here's another kind of conversation I had once in case this helps you:
Dr: Hm, yeah, he has kidney failure because of this terrible, rare disease. Welp I'll see in you in a year when his kidneys are done dying.
Me: A rare disease? Can we slow the progression of the disease?
Dr: I dunno. I'm not a specialist in this disease. I mostly focus on getting people onto dialysis.
Me: OK, can you help us find a specialist?
Dr. Hm. I dunno. Probably not, because only 1 guy knows about this disease basically.
Me: OK? What's his name?
Dr: Well, he's in New York unfortunately.
Me: We can fly to New York. It's still pre-covid. Planes are flying.
Dr: Oh well OK in that case I can give him a call.
Me: OKAYY??? THANKS?????

You kind of have to pretend to be an idiot and at the same time nudge them along. I agree with you, it sucks! But knowing what to do and just trying to get their approval is the only way I have ever gotten anything done with these people.
posted by bleep at 1:45 PM on July 29, 2021 [19 favorites]

Bearing in mind that I’m past frustrated

Do you think these people are doing this deliberately? Or are they just working within dysfunctional and poorly supported systems. If it's the former, I really feel for you and suggest seeking other consultants asap. If the latter, then they are probably just as frustrated, diminished, and burnt out as you and it might be worthwhile working out you help them help you.
posted by Thella at 1:51 PM on July 29, 2021

I get flustered in the moment and it’s hard to be an advocate (for myself and others) and I need to process. I can hold on to about 1 thought and I use it for “ok, I’d like that documented in the chart.” There’s no specialist to refer him to? Ok, document that in the chart. You don’t think blood sugar levels are a problem? Ok, document that in the chart ad nauseum.

Good luck
posted by raccoon409 at 2:03 PM on July 29, 2021 [4 favorites]

I'm in the US, but it's no better here. My dad was once told he likely wouldn't ever be able to use one of his feet again and the doctor's attitude was "well, at your age (he was late 60s at the time) that's not a big deal." He eventually found another specialist who was able to get him back to playing sports. So yeah, second, third, fourth, opinions are sometimes the only way to go.

Taking a list of questions helps me advocate for myself in the moment.

For the hashimotos and paresthesia, have you considered finding a doctor in functional medicine? Like regular doctors, their quality varies - some can be kinda woo woo, but I've had friends with quality of life problems who have had better luck with them than with 'Western' medicine which really focuses on keeping people alive rather than keeping people well. Some functional medicine doctors also have medical degrees.

Good luck.
posted by coffeecat at 2:14 PM on July 29, 2021 [1 favorite]

Best answer: This won't help for failure to give a damn, or a system where they aren't given enough time or other resources, but if it's a question of diagnostic failure (as in your paresthesia), the following questions (from Dr. Jerome Groopman's book How Doctors Think) might help prod them:

- Ask What else could it be?, combating satisfaction of search bias and leading the doctor to consider a broader range of possibilities.
- Ask Is there anything that doesn't fit?, combatting confirmation bias and again leading the doctor to think broadly.
- Ask Is it possible I have more than one problem?, because multiple simultaneous disorders do exist and frequently cause confusing symptoms.
- Tell what you are most worried about, opening discussion and leading either to reassurance (if the worry is unlikely) or careful analysis (if the worry is plausible).
- Retell the story from the beginning. Details that were omitted in the initial telling may be recalled, or different wording or the different context may make clues more salient. (This is most appropriate when the condition has not responded to treatment or there is other reason to believe that a misdiagnosis is possible.)
posted by Mr.Know-it-some at 2:22 PM on July 29, 2021 [20 favorites]

I'm not a man and I get better care when I bring an able-bodied, white man with me to appointments in the US. I don't know if this is useful for you, but it has helped me.
posted by twelve cent archie at 2:45 PM on July 29, 2021 [6 favorites]

My mom who lives in Manitoba and has had some similar experiences also had luck bringing her husband (white-passing, male, physically imposing) to appointments. He went to every subsequent appointment with the neurologist who told her that "she was done having kids, so why did she need to walk more than 6 mos a year?" (ruptured disc). Luckily the surgeon was much less of an asshole.

In general I think having another person at appointments or having a written list of questions, and the suggestion to request that things be documented in the chart, are useful practice.

I'm sorry this is happening to you and your dad.
posted by Lawn Beaver at 3:49 PM on July 29, 2021 [4 favorites]

Response by poster: Thank you, everyone. I hugely appreciate your advice and commiseration, and I’m sorry you’ve had to deal with this, too.

One perhaps Canadian tweak or noteworthy thing when it comes to both my dad and myself - I have found docs care about the bottom line. They’re reluctant to investigate if it won’t change the treatment.

Now I believe there are solid reasons to investigate re my dad for sure, namely that two possible differentials require very different treatment, and at least one of the treatments would make his condition worse. I think one is possible but unlikely - it would require more expensive or invasive tests (one I know for sure his local hospital doesn’t even do). So I have to persuade the doc to look into it, when the doc is thinking “I’ve already decided it’s X, and anyway, the answer is pretty much either a long term care home [ABSOLUTELY NOT] or a retirement home”. The latter is fucking insane because who the hell has $10k a month for a retirement home?? Which was the recommendation, followed by a shrug when I said “no we can’t do that”.

Sorry for the digression… basically his last (ER) CT showed findings that with his symptoms I think MIGHT suggest something that isn’t actually FTD (namely, spontaneous intracranial hypotension), which is a treatable condition (with steroids of all things). But I already know there’s no way in hell they’d entertain the possibility because it doesn’t fit the “dementia” algorithm they do every day, ie a single non-specific SCREENING test.
posted by cotton dress sock at 4:37 PM on July 29, 2021

Best answer: In that situation I would make up a white lie, like "I was talking with my friend and her dad had similar symptoms with the same weird squiggles on the CT, and it turned out it he didn't have enough pressure in his brain, so they gave him steroids and he felt a lot better. Is that something we could try?" I too am sorry this is happening, and I know how exhausting it is, but it's your right and responsibility to look out for you and yours!
posted by bleep at 4:48 PM on July 29, 2021 [3 favorites]

Best answer: Check out the book "How to be a Patient" by Dana Goldberg, it was really helpful!
posted by beyond_pink at 5:18 PM on July 29, 2021 [4 favorites]

Best answer: I just want to second that I (a youngish-looking white woman) have had my best luck with doctors using bleep’s strategy of feigned ignorance/naivety, lots of follow-up questions asked in a supplicating manner, and white lies about the experiences of people I know or “things my friend’s doctor said” that are actually drawn from articles I read in NEJM.

Bleep is also right that doctors are very diagnosis and specialty focused, and often (as you have experienced) check right out when they think a problem is not “theirs.” Instead of acting frustrated when this happens, I’ve started to act grateful and relieved instead: “Oh, good! It’s not X! That’s great news. So, what else can we try?” Then I remind them of my actual symptoms/problems, ask about other specialist referrals, etc. I try to specifically ask what “we” can do about my symptoms, and use specific examples of life things I want to be doing but can’t. (Doctors’ training literally destroys their empathy—they really do need to be reminded that their patients have a life beyond their demographic and file. Giving them a goal like “I want to be able to hike with my kids again” might get their brain working in a different way than the textbook case history problem of “paresthesia.”)

For what it is worth I both empathize and sympathize with you, and I say all this with the knowledge both that it still might not work, and that doing all of this (literal, classically defined) emotional labor is exhausting and demeaning. But it is a strategy that has worked for me, in my subject position, seeing American doctors. I hope you can find something that works for you, too.
posted by CtrlAltDelete at 9:27 AM on July 30, 2021 [7 favorites]

Best answer: My partner pointed me to this thread because I had a telemedicine appointment with a new doctor this morning. Very friendly and helpful doctor, but...

Me: I have a persistent fungal infection. I have tried [things]. I would prefer not to use systemic antifungal medication. I would prefer to figure out the root cause, since it just keeps coming back.
[some discussion ensues]
Doctor: Well, it sounds like you've tried everything. I understand you don't want to use systemic antifungals, but I thing that's the way to go right now.
Me: Oh, you know, somebody I talked to a while back [it was actually articles found online] mentioned a link between this fungal infection and intestinal parasites. Is that... a thing? I mean...?
Doctor: Oh, yeah, that can be a thing. Have you traveled in places that have high parasite populations? We can do a blood test for eosinophilia, which can be an indicator of parasites. Did you want to do that?
Me: Yes, please!

So I guess that's another data point in favor bleep & CtrlAltDelete's strategy of doing research in advance and then gently nudging your doctor in a different direction with vague anecdotal suggestions.
posted by sibilatorix at 11:27 AM on July 30, 2021 [5 favorites]

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