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.

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From:

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?

From:

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.

From:

flarenut

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

From:

firecat

*runs away screaming*

:-)

From:

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.)

From:

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.