• JAS

Evidence-free zone

Version Francaise


South of the Equator, rains come in the morning. In terms of living in Africa, truly living, I've been in a very narrow band on either side of the Equator, but on the mirrored side from here (Mvangan), my favorite thing was the sound of rain on the tin eaves at night, going to sleep to that. Morning rains were rarer, but they at least delayed going to work -- and meetings would either happen on time, happen hours late, or not happen at all. I wasn't a doctor, then. The plan tonight was for a bonfire/ effigy burning in honor of Guy Fawkes day--though there's one English volunteer in this post, we've decided to celebrate everyone's holidays. The rain makes it a little more difficult today.

Rains in the morning. Rainy season that was supposed to start a month ago, (also by the internal calendar I keep by heart from Cameroon -- from January, dry season, small dry season, small rainy season, rainy season). Precise dates over decades and centuries governing planting, harvesting, and when that changes (global climate change), you don't know when to plant, it might be too early or too late, and the crop might either exist less, the same, or be destroyed. Nearer to here, insecurity during the (north of the Tropic of Cancer) summer, meant that people fled their villages, are returning slowly, and will not be able to plant this year, or partially, or not at all, or because of the delayed rains it will be okay.

In medicine, sometimes we say things are "evidence-free zones." Nothing to guide you, going on blind faith and/or prior knowledge and/or hope and/or there's nothing else left.

I only see patients here with HIV and/or tuberculosis. What I like about HIV is also the worst thing about it. Everything (can be) is more complicated. The differential diagnosis expands and changes. It's a different context. Because anything can and still does (and this makes the truly general internist in me happy) happen. That's HIV in Africa, anyway. Practicing in the US, it's often a different story, it truly is (can be) just another chronic disease to manage, more medications and different things to know, and (usually) requires no specialty care. This is a different story.

With TB, it can manifest anywhere in the body, as almost anything. And that's why I love it (syphilis is actually very similar. And in the US, we say that of lupus). Protean. Ever changing. Slippery. And we do have tests for TB here, more than I might have imagined (also, less). But sometimes they're all negative and you have to decide on probabilities, test characteristics, clinical judgment, and blind faith. And now, when they ask for the doctor's opinion before starting TB treatmenta for someone we have not proven has TB... that's me. That's my "clinical judgment." That's my "blind faith." Do I even have that? Maybe, here. Evidence-free zone.

I changed posts this week. I've been in the hospital less, so there's only been one death, thus far, under my (brief hands) of care. He actually died an hour after my colleague and I saw him, my colleague swiftly threaded the spinal needle into his back for perfectly clear fluid, and we hoped for a diagnosis before starting treatment (for what I was convinced he had), what had put him into a coma with a fever of 41 deg C/ 106 deg F for days, and we hadn't known about him. When we went to get the results in the morning, we learned he had died. Found the chart. An hour later. Would I still, with negative tests, started a treatment that could potentially have killed him in a different way, with no proof? Likely enough. Sometimes it's out of desperation. Though how different is it with some chemotherapies? Last ditch attempt. Maybe. Maybe a few more weeks or months or years. Here, often enough, given when people come to the hospital, it's measured in days.

Fewer deaths, last week. With my hands on. I don't know what this week will bring.

In this post, before starting to see patients in the clinics we go to the field, I've attended support groups for the HIV+ patients (translated for me, diligently and thoughtfully, by my colleagues). They have really put an emphasis on and effort into psychosocial programs, including group and individual sessions, which have been remarkable to see. One woman's story involved seeing her husband murdered in front of her when an armed group pulled everyone out of their houses (Not close to where I am. She moved here). And many of the discussions revolved around shame. Auto-stigmatisation, community rejection even upon the perception that you're sick. And after recounting experiences, family not wanting to touch them, eat with them, live with them, talk to them anymore (some people do have more positive stories), they turned expectantly to me for more insights. How, Doctor, can we be better deal with shame?

I have nothing to add. I have heard some of this before, in other practices in other cities, on another continent, in another universe. Patients removing labels from prescription bottles, hiding them, losing them. Being rejected from their families, communities. And here, I am, at times, very deliberate in saying that I'm an HIV doctor in the United States as well, that I've had patients there die from AIDS, that many of the medications are the same (...or were...), that I describe the illness in the same way, and that some of the lessons I taught, last week, at a nursing school, were actually just translated from presentations I did over the past year in English. a

*post mostly written November 5th and completed November 12th

But no one has asked me before what to do, in my professional medical opinion, about shame.

The things people want to know in medicine, the things that actually matter to them, are rarely things I know. Eye twitching. Random pain or skin reactions that come and then go away. The real mechanism of palpitations (when you feel them, and why then? It isn't related to heart rate). And shame. The question wasn't about combating stigma, not that day. We're asking people to give "testimonies" of their experiences, on World AIDS Day. Several have volunteered, want to tell about their journey from diagnosis to now, how sick they were and how much better they look.

The nurses here know the medications (there are few), know the labs to draw (there are few), know the common signs and symptoms and diagnoses. They know the patients, some for years. But maybe, just maybe, someone new, from the outside, could give the patients a different perspective on this topic, a way to rationalize and treat and attack.

I have nothing.

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