That Dr Rob article

[firecat]

A lot of people are commenting about this article, a doctor's letter to patients with chronic disease:

http://distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

I get that Dr Rob means well and I like that he admits doctors are scared by chronic conditions and by the fact that many patients with chronic conditions know more about their conditions than the doctor does. I do think respect goes a long way toward improving communications between people. However, I don't think it works when he tries to pretend the doctor and the patient are equal:

"just like you know your disease better than any doctor, I know what being a doctor feels like"

"we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we."

"The best care happens when a doctor understands the patient and the patient understands the doctor."

In a typical doctor-patient interaction, the doctor and the patient are not equal. The doctor has much more power. And although Dr. Rob addresses that the patient is suffering, he completely ignores the power imbalance in the post.

The post got a great many comments and he engaged a lot with the comments trying to explain where he's coming from. In the comments, he sees people saying stuff about the power relationship, but he doesn't get that the power relationship is systemic and what that means. He says stuff like "docs are insecure about their position of power," and he talks about how the good doctors wish the bad doctors would go away. But he doesn't understand that this power imbalance inevitably affects the doctor-patient relationship even in the case of good doctors who mean well.

At a NAAFA conference a few years ago I went to a talk that really hammered home the point that the medical system is a system, and in that system patients are roles and not individuals, and therefore it is very difficult to get your needs met if you have individual needs that the system doesn't have a systematized solution for. (Case in point: After the OH had an operation to install his cochlear implant, the hospital staff persisted in trying to communicate with him by talking, although he had a bandage on his head and was completely deaf.) I wish Dr Rob could have gone to that talk.

Comments

[cleverthylacine]

Heh heh heh. I was directed here by azelrod and I am commenter Azalais in that post. He SOOOO does not get it.

[firecat]

Good comments over there. And he sure doesn't.

[lisa-marli.livejournal.com]

Can I tell you the number of times Doctors know how to treat my husband's Rheumatic Heart? They NEED to give him pills, they NEED to do surgeries. The Head of our local Cardiology Department himself said that surgery was DANGEROUS and pills would do no good. But EVERYONE knows how to treat him. NOT.
The latest was a D.O. floor doctor. *sigh*
We have this fight, every time he sees a new doctor. And we've been seeing a lot of new doctors lately (every hospitalization means a new floor doctor).
And we won't even go into Heart Healthy Diets. He is an Illeostomy patient and needs LOW Fiber and HIGH fat, and that takes Precedent over the Heart Healthy, which actually gives him intestinal grief.
Because the damage happened over 60 years ago when my husband was a child, there really is Nothing they can do. The head of cardiology can't even figure out how he survived. All they can do is support his body when it goes nuts when it is sick. And mostly that is just, let it rest until it recovers.
And people wonder why I find my husband's hospital stays exhausting. I spend most of my time making sure they don't damage him further.

[firecat]

I spend most of my time making sure they don't damage him further.

Yeah, exactly. {HUGS}

[branewurms]

This was one of the things that was bugging me about that post that I couldn't quite put words to. I don't think the doctor's advice is wrong, either; you will get better treatment from them if you coddle them. But you shouldn't have to coddle a doctor to get them to do their job, and I was bothered by the fact that he didn't seem to be acknowledging that or pointing it out. I'd have no problems with the advice itself if he acknowledged that the system was broken and that there's a problem with that.

[firecat]

But you shouldn't have to coddle a doctor to get them to do their job, and I was bothered by the fact that he didn't seem to be acknowledging that or pointing it out.

Yes. He doesn't see what he wants as coddling, he sees it as "treating with respect," but it's coddling, IMO.

[sophygurl]

Yes Yes Yes. Exactly. His advice is technically correct, but it should not be and that is where the problem is.

[kitrona]

YES. This.

[badgerbag]

That strikes me as a pretty good post with good and direct advice. I have also come to the point where I don't expect to be "fixed". My doctor isn't the brightest actually, but at least I've seen her for many years so she has a bit of a background. I remember a few years ago she just asked "What is it you actually want from me?" and I said.... help me manage constant pain, fill my scrips, see me fast if i'm in a crisis where I can't function because a lot of little things have gone wrong. That has gone pretty well for me.

[firecat]

"What is it you actually want from me?"

It's great when health providers ask that.

[eggcrack]

Couldn't agree more about the power imbalance. Yes, I understand that doctors are just human too, but what I'm seeing here is a guy basically telling patients that they should put a doctor's feelings before their own, and that's not the kind of advice I can get behind. Not his intended point I'm sure, but I just felt very uncomfortable reading that article.

[firecat]

telling patients that they should put a doctor's feelings before their own

Or treating the doctor visit as if it were having coffee with a sympathetic friend or something. Which it isn't.

[kitrona]

Yes. I agree.

[amethystfirefly]

the post is good in theory. But, yeah. He doesn't understand power dynamics. And he doesn't understand that a lot of us are beaten down by those power dynamics. I won't say that those people are oppressed, but they are more hesitant to speak out and say what they want. It's really, really hard when you've fought so hard and gotten nothing but people disbelieving you or writing you off as a headcase or whatever, y'know?

[flarenut]

I read this, and the only thing I could think of was, "White Privilege." He wants the person with the disease, who quite possibly knows more about their disease in technical as well as personal terms, to make nice so his feelings aren't hurt. Sure, he couches it all nicely, and talks about how he achieved him position by merit and hard work (and so deserves respect), but it just reads so thoroughly "maybe if you ask the rich white guy politely for civil right instead of demanding them, everything will turn out fine." The patient he describes also matches the picture of the Saintly Invalid. Grrr.

And the power dynamic is implicit in the act of advice-giving itself. Shape up, or... What, exactly?

[firecat]

Yes, I see similarities to white privilege.

Also I went through the letter substituting "man" for doctor and "woman" for patient and it sounded a lot like male privilege.

[flarenut]

Whatever you do, don't substitute "Tea Party Member" and "everyone else in the country".

[firecat]

*runs away screaming*

:-)

[kitrona]

Yes. Respect The Gatekeeper For Your Meds. And, obviously, Shape up or you don't get your meds. (Especially pain meds. You'd think they were made of gold or something, as stingy as doctors get with them.)

I get that he (and other doctors) studied hard to get their MDs. But y'know what? Where's the respect for someone who has been in constant pain for YEARS but has only recently gotten anyone to take them seriously? Don't they get respect for living with that?

And his thing about "I know how to be a doctor"... yes, that's great, but you also GET TO STOP BEING THE DOCTOR SOMETIMES. You can go out to dinner or stay home or whatever and not have people constantly asking you questions. People with chronic pain.... don't. We don't get a break from being in pain, and in some cases, from people asking us nosy personal questions, which is different from asking you questions about them personally.

(Oh, and by the way? You GET PAID TO ANSWER QUESTIONS AND TREAT PEOPLE. That's a pretty big difference right there; we have to PAY YOU so that you'll pay attention to us even though that's supposed to be your life's calling, and then on top of that we have to make sure we do a mental and emotional tapdance so you'll FEEL LIKE treating us? F. That.)

The article has the outward appearance of "this doctor will meet you halfway!" but the underlying assumption that the patient's half is bigger than the doctor's half because the doctor went to school and studied these things briefly and in abstract, and the patient "only" has the years of experience of living with these conditions. Say what?

(Sorry for getting all ranty in response to you... I've been thinking about that article for a while and it just kind of came out.)

[flarenut]

Oh, I absolutely agree, but I would like to go further.

1) What's this "meet you halfway" sh*t? Doctors are paid very well, compared to most people -- even those with years of advanced study and/or direct responsibility for lives -- to do a job. Doing that job to their best of their abilities should not depend on how nice the patient is to them, any more than their pay should depend on how nice they are to the patient.

2) Lots of patients with chronic conditions don't just know more about living with pain and infirmity than the doctor, they know more about the technical details of their case, and quite possibly about the disease itself if the doctor is not a subspecialist. I lost count of the times, when I was with a family member and a specialist, where they said "oh, and XYZ" about previous treatment or the course of the ailment, and the family member or I said, "No, ABC." And we all want back to the record and it was indeed ABC, because they hadn't taken the time to review the file before the appointment. Somewhat fewer the times they said something and one of us said, "What about such-and-such study?" and they said, "Oh, I hadn't read that yet, I'll check on it."

The things that distinguish knowing how to be a doctor from knowing how to be a patient are diminishing, and many of those that remain are irrelevant (as the author notes) to chronic conditions.

[kitrona]

Very good points. And I agree.

(I wish I was more eloquent, but I'm not at my best right now.)

[e4q.livejournal.com]

i quite like doing things that my doctor didn't approve, just to restore the power imbalance. on reflection, i wish i had discussed my eye operation with him instead of presenting it as a fait accompli, not that he would have dissuaded me, but it didn't work and it did cost a fortune.

[moominmuppet.livejournal.com]

I wasn't aware of the article; thanks!

And the systemic power issues are exactly what I struggle with most; it's not really possible for a doctor to set those aside. Whether he or she likes it or not, prescriptive power and gateway control for testing and other doctors is a lot of power, and I always know they have it (and I resent it).

[shehasathree]

Thanks for this!

Also, this "we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we."

annoyed me, because *yes* a lot of my knowledge comes from the years of personal experience, but it also comes from years of hard reflection, combing through textbooks and journal articles, hours spent updating my medical records/medication and symptom lists, sharing my experineces with others and hearing what they have to say. I think the idea that patients only "know" their disease from lived experience misses that a lot of us educated chronically ill folks also become "expert patients" and know a buttload of the scientific/medical side of things, too.

[firecat]

Yes, and the well-informed patient with a chronic disease, especially an unusual one, probably knows more than a GP about their particular condition, because a GP simply can't keep up with everything.

(I like your journal; adding you as a friend.)

[shehasathree]

good point!
thanks; i've added you too. :)

[chaos-by-design.livejournal.com]

I didn't so much have a problem with the stuff you quoted, but I was irritated by his advice of "don't come on too strong." If you have something really important to say (and discussing your health with your doctor would be one of those times), you can't afford to worry about how you're coming across, as long as you're not crossing the line into being rude.

[firecat]

Yeah, and "don't come on too strong" is useless for anything except worrying that you are.

(Added you as a friend. Babylon 5 fans should stick together.)

[chaos-by-design.livejournal.com]

Cool! *added you back*