Map of life expectancy at birth from Global Education Project.

Tuesday, March 02, 2010

Window on the world . . .

or a narrow slit? Lately I've been deeply immersed in people's experiences with their doctors - I've read more than 100 transcripts of actual medical encounters, run four focus groups of patients, and interviewed five people individually in the past couple of months. I've seen comparable amounts of data over the past four years or so, and I saw an earlier burst of data about ten years back. And of course I read numerous journal articles on the subject every week.

Recently all the people I've interviewed and all the recorded visits I've reviewed have been of people living with HIV. They have a high prevalence of comorbid substance abuse disorders and mental illness, and a lot of them, obviously, have had hard lives. I find that for the most part, the people like their doctors, and the doctors treat them respectfully and compassionately. Surveys we also do of the patients confirm that they overwhelmingly say they like and trust their doctors. That doesn't mean they necessarily communicate effectively, in a few ways. There are plenty of conflicts but they tend to be concealed -- manifesting as evasion, people talking past each other, dissembling, negotiating without anybody declaring that's what's happening, answering the wrong question or ignoring the tough problem. This is how people with misaligned agendas, of course, maintain peaceful relationships.

Okay, we can surely do better than that. But when I tell people what I do for a living, they more often than not let me know that their own problems with doctors have been experienced much more overtly. I suppose it's the bad experiences that tend to stand out and when things seem to go okay for us, we take it for granted.

But still, there's a difference between what I see, which is best understood as a skill deficit in the face of the normal vagaries of human behavior; and what many people tell me they experience, which includes condescension, callousness, and inattention to their needs. I mean yes, people's needs don't always get met, but in my data it's from missing the clues, not lack of caring; whereas my friends in the Real World often have more serious complaints.

So I'd like to understand why that is. It may have to do with the settings where we collect our data; and the doctors who chose to go into HIV care, knowing they are going to see a lot of vulnerable people. Or it may be that the way people answer surveys, and the way I perceive the interactions from the outside looking in, isn't necessarily how people experience these interactions. Or maybe they just like to blow off steam when they're talking to a friend.


C. Corax said...

I've experienced more than enough assholery from doctors, but when it's my, or my family's, health on the line, I'm able to give them lip back and I express my anger or contempt for their behavior, if it's warranted.

It seems to me that my problems are pretty freakin' minor compared to even well-intentioned misunderstandings between doctors and patients when the patient has HIV. To interpret what you're reading or hearing, you have to read between the lines a bit. Do you think the patients know that they may be misunderstanding or missing important information? Do you think the doctors are believe they are communicating well with the patients? If a patient isn't sticking to a protocol, do doctors generally try to find out why that's the case?

So many questions!

kathy a. said...

i'm wondering if there is a difference overall between longstanding patient/doctor relationships, and one-time encounters? because most of the doctors who have seriously pissed me off have been one-time or short-term situations.

some of those were related to my parents and the illnesses that resulted in their deaths -- so, i was a bystander or carrying power of attorney, and they were specialists, and there was no ongoing relationship. callous, condescending, no-time-to-deal-with-that, yadda.

one situation jumps out from my personal experience -- a fill-in temp doctor at my GP's, who was definitely projecting some things from his own experiences to give me some completely inappropriate advice about leaving my profession. weirdly, it was not an encounter laden with overt conflict -- largely because i wasn't going to get into it with a temp doc -- but i think there is an inappropriate "diagnosis" on my permanent medical record. also, i did not quit my profession.

kathy a. said...

actually, i fired my mom's primary care doc due to crap from him. so, he wasn't acting as a specialist. but he was an asshole.