Knowledge, and lack of knowledge

We’ve attended at least 25 informal classes or formal lectures on various aspects of HIV/AIDS, treatment and opportunistic infections here, mostly with Yale people but also on the wards and at the Infectious Disease Institute. Even though we’re obviously barely skimming the surface of all the work that has been done on this disease, I’ve been reminded again of the joy in learning one subject well, in thinking about the details of pathophysiology and practice, diving to the depths, marveling at how much we’ve figured out and how far there still is to go. At this early stage in my medical training, it is rare for me to feel confident in my own knowledge, to be able to present a medical opinion or a treatment decision with solid data, and so I’ve loved the feeling of knowing at least a tiny piece of medicine so much better in such a short amount of time. I can feel secure talking to an intern about how tenofovir is actually a nucleotide reverse transciptase inhibitor (even though it sounds like it should be a protease inhibitor), and why it might matter for a particular patient that it is already phosphorylated as a nucleotide and not a nucleoside RTI. I can answer the question about why rifampin is going to be a problem with a particular regimen, posed by the doctor on one of our first days in clinic, not with a vague answer about “drug interactions” but with a detailed understanding of P450, actually seeing the mitochondria in my mind.

Most of the time, though, I feel much more exposed here than I ever do in the states, more frustratingly aware of my relative lack of knowledge. We were at Mulago during the annual examination period for the students and residents, which meant that the residents were busy cramming and the attendings were busy administering bedside practical exams. The interns, therefore, were carrying a larger-than-normal burden of responsibility for patient treatment decisions (one attending told us that patient mortality spikes every year during exam period). It took me a few days to recognize that typically, when interns questioned us during rounds, they weren’t doing it to teach, to test whether we understood various treatment decisions. More often, they were themselves unsure what to do with a particular patient, and were looking for any available opinions. And unfortunately, much of the time we didn’t have a lot to offer.

This became abundantly clear one morning in the first week when Rachel, Lily, and I joined a smart, friendly intern on hematology/dermatology rounds. Hematology and dermatology have never been my strongest academic areas to start with, and my sinking, slightly panicked feeling increased as the morning went on. We’d get to a patient, he’d wonder what we thought, and as the morning went on, it became clear that in most cases, he didn’t really know what to think either. As the three of us plus the intern stood around a patient’s bed, trying to make sense of her low white blood cell count and dropping platelets, we were pawing through Pocket Medicine and scrolling through epocrates with a collective sinking feeling. It was a disturbing feeling, not to know. It is always disturbing not to know, to be called out during rounds in the states, to be unable to answer a question someone thinks you should know. But here, the intern didn’t care at all whether I knew an answer. He just needed an answer, from anyone, for the patient in front of us right now, and none of us could offer one. As Rachel said in disgust, “these are people’s lives, and we’re looking through Pocket Medicine.”

Rwanda

Any weekend trip, of course, yields only superficial impressions of a new place. But a weekend trip to Rwanda taken immediately after reading Philip Gourevitch’s devastating book about the 1994 genocide, "We Wish to Inform You That Tomorrow We Will Be Killed With Our Families," makes it hard to think about anything except the weight of recent history in Rwanda. It’s one thing to read that between 800,000 and one million Tutsis and so-called “moderate” Hutus were killed by Hutu militants and by their neighbors and colleagues and schoolmates in just 100 days all over the country; it’s another to actually arrive in that country and realize that life there looks no different on the surface.

As soon as we crossed the border (pushing our rented matatu, whose engine balked against leaving Uganda), our driver had to switch from the left side of the road to the right side of the road and the few official signs switched from English to French, in small reminders of the arbitrary remnants of colonialism. Our van got quieter, as we all looked out the window. Rwanda looked back, beautiful and placid, lush green fields of tea or maize among mist-covered and carefully cultivated hills, deep rivers and the now familiar African procession of humanity along the roadsides. Just like everywhere, women walked single-file, balancing bundles of produce or baskets of household goods on their heads, many with babies tied securely to their backs with towels or cloths. Men strolled empty-handed or maneuvered bicycles loaded with carefully balanced loads of bananas or sugar cane. Children pushed wheelbarrows with yellow plastic containers of water or paraffin or carried school backpacks. Everywhere, colorful patterned skirts, bright plastic shoes, and threadbare suits or school uniforms mixed with cast-off American clothes, rejected by Goodwill for resale in the states. Faded T-shirts advertised North Central High School’s 1997 musical production of Bye Bye, Birdie or proclaimed Colby College’s intramural volleyball tournament champions; stained sweaters featured grinning jack-o-lanterns and Christmas reindeer; ripped windbreaker jackets promoted the Orlando Magic or the Detroit Tigers. Men cut the grass with swinging machetes, women bent at the waist to sweep leaves from dirt yards, or hoed or planted crops in the fields. In many ways it looked just like the roadsides of Uganda, or Kenya, or Tanzania, or Botswana, or rural South Africa. But this was Rwanda.

I didn’t want to make assumptions. I didn’t want to wonder whether all of these people walking on the road were Hutu or Tutsi. I didn’t want to interpret all of Rwanda through a 13-year-old lens. But in that short visit, I just couldn’t help it. When a man waved at us on the street, for example, and all of the fingers on his right hand were gone, my mind jumped right back to 1994, correctly or not. Rwanda had very few signs along the road, but my eye was pulled time after time to one red word in the middle of black text that needed no translation: Jenoside. Dr. Simba, the Makerere University political science professor who has been giving us a course on regional politics, mentioned his frustration with how the only thing the world knows about Ugandan politics is the gory details of Idi Amin’s brutal dictatorship, more than 20 years after it ended. I didn’t want to impose a similar morbid fascination on a whole country, but I simply couldn’t stop.

Rwandans seemed, on the surface at least, to have a lot of respect for order and regulations. We had been in the country for all of three minutes before being pulled over at a police roadblock--for the sole purpose of ensuring we were carrying a fire extinguisher in our matatu, as prescribed by law. One of the major modes of transportation in Kampala is by boda-boda, small mopeds with passengers perched on the back as the driver weaves through traffic at the fastest possible speed. I have never seen a helmet on a boda-boda driver or passenger in Uganda. Kigali has boda-bodas, too, but every driver not only wears a helmet (with his phone number emblazoned on the side) but must also provide a matching helmet for his passenger. More than one Rwandan proudly pointed out the relative lack of litter on the roadside to me, and one of our monkey-tracking guides, within five minutes of telling us that he knew about 50 people who had been killed in the genocide, had started discussing the popularity of roadside flower planting in Rwanda. It’s hard to imagine the chaos of killing that occurred in this context of order and apparent civility.

We visited the major genocide museum on our first afternoon in Kigali, but our guidebook also mentioned a smaller genocide memorial at a church 30km out of town. We arranged to pay a man from the hotel $5 to ride along and “give us directions” on Sunday morning (which basically meant he asked directions from people all along the way). Two hours and many U-turns later, we had arrived at the Nyatama Genocide Memorial. Well, we hoped we had. When we parked outside the small brick structure, we were immediately surrounded by the now expected pack of noisy, smiling children, waving and calling mzungu, mzungu! As we made our way toward the building, smiling at the kids and relieved to be out of the car, we noticed purple and white plastic cloth streamers all around the building and a stream of adults dressed in bright, formal clothes, heading behind the church to join a group of about 100 people who had assembled in the corner of the church yard. “A wedding!” we thought, but something was off. None of the adults gave any kind of welcoming or festive vibe or even directly acknowledged our presence and I started to feel acutely uncomfortable. Here we were, a pack of mzungus in shorts and jeans, T-shirts and hats, holding backpacks and cameras and wandering into some kind of formal celebration or outdoor church service at 10am on a Sunday morning, uninvited and not able to communicate why we were there.

And why were we there? What is this voyeuristic “genocide tourism” anyway? What right, as outsiders, did we have to invade someone else’s community to contemplate atrocities committed there? And, more fundamentally, were we even at the right church? There were no obvious French or English signs announcing that this was a genocide memorial, no other tourists, nothing but this large formal gathering outside the building, which, I realized with a sinking feeling, some of our group had wandered almost into the middle of. And I was this uncomfortable before I noticed the coffins at the front of the gathering and realized that in fact, the “wedding” was a funeral. It was initially a relief to enter the church, out of sight of the gathering, and discover that mercifully, it was empty.

We entered into a large dusty room with a cement floor, brick walls, and a corrugated metal roof. Low backless wooden benches served as pews and a wooden altar with a stained white cloth, an empty stone baptismal font, a statue of Mary and a partially broken stained glass window were the only obvious religious adornments. Yellow light filtered in from the broken window, through the latticed back brick wall, and from multiple small holes scattered across the ceiling. More of the faded purple and white streamers hung around the walls and on the supporting columns, some empty caskets sat at the edge of the sanctuary, and a raised flat area in the floor held some recent flower arrangements. Our group started wandering around the church, unguided, until someone realized that the flat area overlaid white tiled stairs. Down the half dozen stairs was a large glass case with around 150 skulls of all sizes, some bearing traumatic fractures, as well as some long bones, one complete skeleton, some jewelry, and two machetes. I honestly still wasn’t sure we were actually at a genocide memorial until seeing that case. We stood and looked, quiet and uncomfortable. Suddenly, there was a small commotion above us and eventually the message was translated that we were not supposed to be down there. I was so uncomfortable and feeling so intrusive that I was ready to leave right then. In fact, I went and stood outside the church, still trying to stay out of sight of the ongoing outdoor funeral.

It turned out, though, that a woman had arrived to show us around the church. She spoke neither French nor English, but the man we had brought to direct us from Kigali could translate from the local language into Swahili and our wonderful multilingual driver had learned Swahili and could then translate into English. This woman’s wooden solemnity was unnerving. She offered no welcome or smile. She did not introduce herself. She did not ask why we had come or where we were from. She gave no background for the church or the genocide. She simply started describing physical things in the church, each more disturbing than the last, as selected details filtered through the translation chain.

The brown stains in the altar cloth? Blood that had been mopped from the floor. The full skeleton in the case downstairs, which she illuminated with the light on her cell phone? The remains of a congregant who had been speared through her vagina up to her lungs. The previously unnoticed brown stains on the back wall and ceiling? Blood from where children had been killed by swinging their heads against the brick wall, brain matter and blood spattering onto the high ceiling. She waited for no reaction from us, did not editorialize, just moved mechanically around the room. A half-open door led to a small side room filled to the ceiling with plastic tarps wrapped around cloth bundles. These were the belongings of the people killed in the church, she said, the few things they had brought from their homes, hoping their lives would be spared by their neighbors in this place of faith. Here and there, a hoe, a shoe, or a patterned cloth had escaped the bundles, but mostly the piles were untouched, never claimed or organized or sanitized or processed in any way.

It was this lack of polish, lack of signs, lack of editorializing or translating or processing for American tourists that made this site feel so much more real and immediate than the very well-done genocide museum in Kigali. I realized that while the content of that museum had been highly disturbing, the processed details had allowed for some distance and had invited some intellectualization of events. Even the format had been somehow familiar and oddly comforting, with the memorial flame and gardens outside, the individual pictures and stories of victims, and the reassuring if empty platitudes that only education can prevent such atrocities from occurring again. I came out of that official museum thinking about the history of the word “genocide” and wondering about the details of reconciliation and justice across the country generically; I came out of this church feeling physically ill and wondering how people in this community can possibly be functioning psychologically at all under the guilty weight of history.

The woman led us outside, where we crossed yet again in front of the ongoing funeral service and descended more stairs into two huge silent crypts filled with stacked coffins and the same purple and white cloths. The church, she said, is now a repository for discovered mass graves in the area and thousands of skeletons have been exhumed and then re-interred in these constructed crypts. Each coffin holds the remains of 15 to 20 people, with the coffins stacked 12 feet high, the luxury of individuality and names lost. Many skulls are lined up here as well, providing inarguable proof of brutality, blank eyes staring accusingly. Most strikingly, this is not a sealed museum, or a process of remembering that is over and done. Two coffins had been interred the previous day, and the ongoing funeral service outside, which had attracted over 100 people from this small community and made me so uncomfortable, was in fact a mass funeral for another set of bodies from a previously unmarked mass grave. This memorial service, which we’d initially confused for a wedding, was for individuals murdered 13 years earlier in this community because of their ethnicity. Standing in the dusty stillness, bathed in the light of a sunny Sunday morning and the rituals of communal grief and remembrance, this group of congregants was marking that fact, not for tourists or for historical accuracy but as part of the ongoing life of a shattered community. Life on the roadsides of Rwanda may look no different on the surface, but for me, that quiet ceremony at that small church, still structurally sound but utterly unusable in practice, showed otherwise.

Mzungu

I can get in almost anywhere and do almost anything at this hospital because I wear a white coat, yes, but also a white face. This unearned deference makes my daily life in the hospital easier but it also makes me uncomfortable at times. Most patients and attendants seem inordinately pleased to have the attention of mzungu doctors. They do not know me at all as a provider; the palpable respect I feel as they rise from their mats, clasp my hand, or smile and speak their thanks is unearned and has nothing to do with my often ineffectual actions. I have done and will do very little for most of these patients--perhaps I am only visiting to listen to a particularly strong heart murmur or to see a particularly dramatic skin lesion, gaining knowledge for myself and offering nothing in return. I see the unquestioning respect for doctors in patient attitudes toward Ugandan providers as well, but I can’t help but feel that my own interactions with patients are colored by an automatic deference with deep roots.

We are all reminded of our status as outsiders constantly, addressed as mzungu [“foreigner” or, loosely “white person,” literally translated as “wanderer”] countless times a day, by children waving and yelling it on the path to the hospital, by patients, by strangers. Tiny details of the day demonstrate the legacy of colonialism, even in the hospital. Doctors performing a neurological exam, for example, have patients repeat the phrase “British constitution” to test for word-forming difficulties. Most patients have two first names, a Ugandan name and a name alternately described to me as an “English name,” a “Christian name,” and a “slave name.” Even leaving history out of it, in the here and now my mzungu face represents money and unimaginable privilege. More than once, patients have asked me directly for money to buy food or a blanket, to fund chemotherapy, to pay for transport. I’m more acutely aware of what I represent and what I must be careful not to promise as an outsider.

P.E.

Most of my medical education at this stage has been presented as easily digestible small bits of data, whether by a textbook or lecturer, proclaiming for example, “this is Kaposi’s sarcoma.” I would have told you with some confidence that KS manifests as dark flat skin lesions; perhaps I could have dredged up the HHV-8 etiological details with some concentration. But here, after just seven days in the hospital, I’ve been surprised so many times by physical presentations that it feels like I’m seeing patients for the first time. On one of our first days here, we watched Dr. Sadigh really use the details of the physical exam, starting with nails and hair, to work through a differential (for ascites), something I’ve never seen an attending do before. I now find myself searching for physical findings not to fulfill the half-hearted routine series of gestures that I’ve seen on the wards at Yale, but because I’m curious about what I’m going to find. It actually reminds me a bit of gross anatomy from first year, the amazement of seeing things for the first time, tinged with conflicting emotions about the power of disease and particularly my right to invade another’s body as a learning experience.

Here, pathologies are often so advanced and imaging and lab data are so much less available, that physical diagnosis is moved back to center stage. Regular rounds on any service here could be roughly equivalent to unusual physical diagnosis rounds at home. In clinic, for example, I saw a man with KS. Rather than dark flat skin lesions, I saw a leg swollen to five times its normal size, looking for all the world like elephantiasis, the lymphatic system hard and indurated, the skin weeping with superimposed infection. The doctor noted my surprise and laughed, “it’s not like the textbook, is it?!” I feel like I go through ward rounds with a running silent commentary of disbelieving “that’s,” as in: That’s Kaposi sarcoma? That’s a skin lesion of cryptococcal meningitis? That’s what superior vena cava syndrome can look like? That’s the spleen, way down there? That’s the PMI, all the way over there? That’s the LV, barely moving on echo? It’s making me think about pathophysiology in different ways, and making me want to reread physical diagnosis textbooks, hoping to eventually gain the confidence to feel secure in my PE skills.

P.M.H.

As medical students, we’re taught to present patients starting with the history of present illness, followed directly by the patient’s past medical history. On internal medicine rotations, this past medical history typically includes a long list of chronic diseases and previous treatments that color the current disease manifestation. As we started to write up a few cases here, I realized that even the long intake notes completely lack a “past medical history” section for most patients, perhaps beyond comments of whether they have been previously treated for malaria or TB. Obviously, it’s not because these patients lack a past medical history. In most cases the only fully relevant piece of PMH is serostatus, and every patient is offered routine HIV counseling and testing on the wards. It’s in part the “peds phenomenon”: most patients (particularly those with HIV/AIDS) are relatively young and their bodies have not been ravaged by the diseases that accompany growing old in a wealthy country. But it’s also because I think there is an unspoken understanding that whatever disease has brought them all the way to Mulago is the big one, the one that matters, the one that will likely take their lives one day. Smaller complaints pale amid a sense that anything really major would have killed the patient before the present admission. There simply are not many patients at Mulago “status/post partial colectomy” or “s/p cardiac cath” or s/p any of a thousand other things.

N.A.D.

One of the quick shorthands used to describe patients in written hospital notes in the U.S. is “N.A.D.”—no acute distress. It’s an interesting phrase, ripe with the assumption that we are controlling suffering even as we attempt to defeat disease. There is no scribbling “N.A.D.” on the ID ward charts here, because many—if not most—patients emphatically are in acute distress. They wouldn’t be anywhere near Mulago Hospital if they weren’t. It is true that they do not often complain, but it is not necessarily for lack of suffering. On the ID ward, in particular, where the final toll of AIDS is most clear, many of the patients are so ill that it is as though they are not physically present. More than once, I’ve thought a bed or mattress was empty, when actually the scrap of twisted blanket covered a patient, wasted and shrunken into himself with pain, largely unresponsive.

Each patient is supposed to have an attendant, a mother or daughter or brother or grandmother or friend who generally stays at the hospital, sleeping on a mat next to the bed and attending to the patient’s needs, from providing food and blankets to cleaning and changing bedding, to purchasing medicine from the hospital pharmacy and dispensing this medicine, to deciding whether the family can afford a recommended $3 CBC or $10 X-ray. On questioning, these attendants speak for their patients, who often cannot speak themselves: “she is in pain,” “his fever is better” “she still can not eat,” but the ward is still perfused with a sad, passive and palpable sense of helplessness.

A woman ill with toxoplasmosis died on our very first set of morning rounds, just as we were passing the congestion of beds in the hallway. I didn’t even notice this eddy in the quiet chaos until I moved closer to see what the intern was examining and realized the woman’s eyes were fixed. He did a perfunctory check for a pulse amid a sudden surge of women around the bed crying and wringing their hands. The intern shook his head, pulled the blanket up, murmured something to the family, and moved on, into the next room full of patients. Since then, we’ve come to recognize the distinctive collective cry of the family or attendants when a patient dies, the brief wailing outburst heard across the ward that cuts briefly through bedside teaching sessions or morning rounds.

Pain seems to be fought mainly with liter-size glass bottles of pale green liquid morphine, scattered haphazardly around the room near bedsides, squirted into patient mouths with syringes by attendants. One morning, the intern spent five minutes trying to teach an elderly attendant, a patient’s mother, how to draw up morphine into the syringe. The attendant had both vision and dexterity problems, but if she could not get the hang of it, the patient was unlikely to get any pain relief. Patients without attendants, we were told, may not receive medications at all.

In Uganda

I'm spending the better part of June and July in Kampala, Uganda, doing an internal medicine rotation at Mulago Hospital. I'm here as part of a team from Yale, with two other final-year med students and a whole host of other wonderful characters. We write informal "reflections" as part of the program and I'm going to post mine here as well, unedited and rambling as they are likely to be.