Map of life expectancy at birth from Global Education Project.

Wednesday, January 28, 2009

What I do

In response to C. Corax, unfortunately there are some weird rules to the science game -- rules which may be undemocratic, but which I have to play by. In particular, I'm not allowed to go public with research results until they have been published, except in a limited way at academic conferences. That means we've found out some stuff here that I think is interesting, but I can't tell you about it or I might get in trouble. In fact it would be helpful to get some feedback from a broad audience, and would undoubtedly improve the interpretation and applicability of results, but that would be violating the privileges of the secret society.

So let me at least tell you more generally about my interests.

I originally became interested in what is generally framed as the problem of cross-cultural competency in medicine, and the broader issue of how language and culture shape people’s understanding and engagement with their health and health care, and that of significant others. These interests developed largely for reasons of personal history, but the subject also happens to be of topical importance, complex, and intellectually interesting.

I quickly recognized that the cross-cultural situation just adds a layer of complexity to what is already a very problematic kind of encounter, and that the problem of cultural competency is often misconstrued. So here are a few observations I made early on that are central to my current perspective.

In 1996 I had the opportunity to audiotape 150 pediatric visits, mostly in primary care but also a few pulmonology (all asthma), lead clinic, and growth and development specialty visits. About 2/3 of the families in the set are Latino, with every possible language situation: Dr and mother (or the occasional aunt or grandmother and a couple of fathers) both speak English fluently; mother gets by on less than great English; mother and Dr both speak Spanish fluently; Dr gets by on less than great Spanish (but probably thinks he’s Cervantes); there’s an interpreter (a bad one, in 100% of cases); and in one case, the 12 year old sister of the sick infant interprets. There is also a case in which a Haitian physician and Cape Verdean mother communicate with each other in broken Spanish.

The journal articles which have come out of this data set all concern interpretation; unfortunately I haven’t had the time or resources to turn my numerous conference abstracts on other subjects into articles. But here are the bullets:

Cross-cultural competency was oncen understood as being all about people’s culturally specific health beliefs and practices – the weird voodoo and herbal concoctions of those colorful, primitive exotics. Providers are always getting dragged off to these workshops where an expert will tell them all about mal de ojo and Santeria. Pish tosh . . . and that is now generally recognized.

These practices and beliefs obviously do exist, but learning about them has next to nothing, or maybe less than nothing, to do with becoming a culturally competent provider. After all, quite a few suburban WASPs who played on the same college golf team with the doctor gobble potions they buy at the GNC, have the nuns pray for them, wear copper bracelets, or chant. Providers can always ask about that stuff if they think it’s important.

The real problems of cross-cultural competency are just a crust on the standard casserole. The language barrier is a huge issue of course, and interpretation is at best a necessary evil and hardly a solution – of which more anon. But setting that aside for the moment, cross cultural encounters differ in degree, not in kind.

My observations – as yet informal, so let’s say hypotheses – are that cross cultural encounters are often relatively ineffective due to the following characteristics:

• Misalignment of expectations about role relationships and interaction styles. For example, Latinos often perceive that Anglo doctors are “cold,” overly businesslike, and unfriendly. I don’t know about medicine, but in social services and behavioral health we often run into boundary issues – the clients want to invite the therapist to the family barbecue or the baptism.

• It may seem paradoxical, but this does not imply an expectation of lesser social distance. On the contrary. Providers may be unaware of the extent to which their cultural authority inhibits people from providing intimate or embarrassing information, asking questions, or indicating that they do not understand something.

• Non-comprehension of people’s lifeworlds. Providers don’t appreciate, and don’t think to ask about people’s social, economic and physical context and how it may interact with adherence to medications, life style recommendations, appointments and follow-up, etc. This includes the specific issue of individualism vs. family and community in treatment decision making and self care. (Hint: the dominant Anglo culture assumes these are essentially issues for the patient as an individual.)

You’ll notice right away that patients don’t have to be exotic for these problems to apply, one way or another.

Also notice that I haven’t said anything about health literacy, comprehension of scientific theories of disease and treatment, or remembering and following complex instructions, and that’s because none of that has anything to do with whether a situation is cross-cultural or not, assuming we get past the basic issue of communicating with people in a language they understand. It helps, obviously, when patients have more formal education, but I have found that even well-educated people whose education doesn’t happen to include a lot of biology and biomedicine can be pretty much at a loss when it comes to etiological and therapeutic theories.

It’s important to remember, however, that in general, people don’t know what they don’t know. We can observe from the outside that people’s understanding of how their doctors explain their diseases and treatments is not well aligned with what their doctors actually think, but people very seldom complain that their doctors say things to them that they do not understand. By and large, they either think they do understand, or it goes right over their heads without their really paying attention. Their complaint, if any, is likely to be that they weren’t told anything at all, the doctor never mentioned that. The concerns of “health literacy” and instrumental understanding are pretty much etic to patients. Most of the time, they’ll fill in the blanks with a story that satisfies them, rather than decide they didn’t understand something.

So, what do patients take away from their encounters with their physicians, and vice versa? (Note that the question of what physicians understand about their patients is not as commonly asked.) How do treatment decisions really get made, what communication strategies result in better mutual understanding, more success by both physician and patient at managing disease, and better lives for people?

A second broad interest concerns the social production of health, of which medical care is not such a huge part after all. Call it health equity. Justice if you will. Again, I tend to see it through a frame of culture and ethnicity but that's just an extra layer, you don't have to be a foreigner or a minority group member to get screwed, one way or another. My first graduate degree is in environmental policy (which is how I learned that economics is a crock) and I'm trying to understand how communication in the clinic and people's life worlds are connected.

Finally, there is still that problem of language. How does language construct reality, what are the limitations of interpretation -- ultimately meaning simply cannot be entirely the same in different languages -- and how can language barriers be minimized in clinical practice?

So those are the areas in which I believe I am some sort of expert, but that doesn't mean I know more than you do about them. It just means I know about them in a particular kind of way. We all experience our own lives, our own health, our own encounters with the medical institution, and we know all about those subjects. So I intend to do research in a way that is still fairly unconventional, and that is in partnership with people who used to be treated entirely as subjects: what we call participatory research. So I'm hoping that all of you can be participants as well.

2 comments:

kathy a. said...

all of this is fascinating.

C. Corax said...

For example, Latinos often perceive that Anglo doctors are “cold,” overly businesslike, and unfriendly. I don’t know about medicine, but in social services and behavioral health we often run into boundary issues – the clients want to invite the therapist to the family barbecue or the baptism.

Not sure if this is what you mean, but my mother was traveling in Puerto Rico once and became ill. She went to see a doctor (who was female, as it happened) and my mother recounted with wonder that at the end of the visit, the doctor hugged her. It made her very happy. So maybe if that sort of thing is the norm there (I have no idea whether it is or not), I can see people being treated here might perceive doctors' boundaries as coldness.