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.