Last day: what to say as you say goodbye

On our first full day at Mulago Hospital, almost six weeks ago, we visited the bedside of a 31-year-old woman with superior vena cava syndrome presented as part of the Ugandan residents’ report. I remember being impressed with the high level of theoretical discussion among the residents. After discussing the importance of pattern recognition in identifying the etiology of this woman’s swollen arms and face and dyspnea, we talked a bit about the anatomy involved, reviewing how the rigid structures around the SVC make this thin-walled, low-pressure vessel more vulnerable to compression. We reviewed the importance of collateral vessels, as the residents unthinkingly showcased their anatomic fluency, mentioning the azygous vein, but also the internal mammary, the lateral thoracic, the paraspinous and esophageal veins. We talked informally about pathophysiology, running through a list of possible culprits, from lung cancer to lymphoma, breast cancer to germ cell tumors.

At the bedside of the patient, we got our first real taste of the importance placed on physical exam here, as we actually traced the path of the engorged collateral vessels. We milked the vessels to see which way they refilled, touched the woman’s edematous arms, felt for supraclavicular nodes for possible biopsy, and discussed the possibility of cardiac tamponade and the exam maneuvers to rule it out. Finally, we all crowded around her chest Xray at the one working light-box, studying the shadow of her massively enlarged mediastinum, talking about possible etiologies and treatment options, discussing approaches to biopsy, even reviewing which neoplasms would be more responsive to radiation or whether steroids might be indicated. I remember talking with Lily and Rachel at the end of that first day about how impressed we were with the knowledge fund of the residents and about how today had been the first time in our medical training that we had ever seen an attending on the wards do more than a cursory physical exam.

In the weeks that followed, I returned to this patient’s bedside nine or ten times, not as part of her official medical team but curious about her clinical course. Twice, I brought another student who had arrived at Mulago after we had, sharing some of what we had learned in that first day’s report, demonstrating the patient’s amazingly engorged collateral veins, doing my part for the informal physical exam teaching that highlighted every day of learning for me at this hospital. The woman did not speak one word of English, and with each visit I tried out more of the Luganda that I had learned in the interim. As I learned more about how Mulago worked, I learned to ask about attendant relationships in simple language. I confirmed that the young man and older woman sitting or sleeping on mats near her bed, day and night, were her husband and her mother. I asked our Luganda teacher how to say “you have a beautiful baby” and “what is his name?” specifically to talk to this woman, who had her nursing three-month-old infant with her at all times. The infant’s name, it turned out, was Motovu.

Someone from the Yale team had previously taken some pictures of this patient’s chest wall, face, and abdomen for clinical teaching. We had learned in Luganda class how to ask patients for their permission to do this, meaning that “camera” was in my shortlist of non-medical Luganda nouns, and “take a picture” was in my even shorter list of verbs. One day, in the first patient-initiated conversation I actually understood in Uganda beyond greetings, this patient asked me something about a camera and taking a picture. I pulled mine out tentatively, not sure I had actually understood the exchange, and she smiled broadly and began pantomiming taking pictures. Using sign language, I offered to take a picture of her and her family, not quite sure what she wanted, but after a few vigorous sign language exchanges, it became clear out that she wanted all of us in a picture with her. So, in the middle of the busy ward, our group of Yale students on informal rounds took a picture with her family. I eventually managed to download and print out that picture just using the regular black-and-white office computer printer, and her family’s excitement when I brought them a copy was palpable. After that, if I ever asked to take a picture of a patient’s physical exam findings, I always also offered to take a more general picture of the patient to print and bring back, which proved to be hugely popular (and made me feel much more comfortable doing this kind of “recording” in the first place).

As the days turned into weeks, I read this patient’s sparse chart compulsively whenever I visited, noting the comment from her admission physical exam on her “pretty, round face” and the multiple entries that the family did not have money for tests. I also saw proof that occasionally, even for patients with no resources at Mulago, the mostly broken system can provide some options—although it took the better part of two weeks, paperwork in the chart eventually granted her a waiver for payment for a CT scan, approved from the fund that collects donations (mostly from residents and attendings) for tests that otherwise would not happen for financial reasons. The CT turned out to be only 12 cuts on a film the size of an X-ray, but it actually happened, the only time I saw this in my six weeks.

However, as the weeks slipped by, not much else happened, as far as I could tell. Motovu, her baby, learned to sit unassisted, clapping his hands and looking around the open ward, but his mother did not start treatment or even, it seems, ever get a clear tissue diagnosis. This woman had a three-month-old infant and a devoted family but no financial resources, and she was trapped in a system that typically cannot provide advanced care even for patients that do have money. I was never on her team so I do not know what kinds of discussions may have taken place around her treatment options, but I saw plenty of other patients on other wards who languished in the hospital during our whole six-week rotation with no clear treatment plan. I also read stories in the newspaper about the likely pending closing of Mulago’s main cancer center and thought about her, but only in a disconnected way, since she seemed unlikely to even enter cancer care at this rate.

Slowly, following this woman from a distance, I came to understand how theoretical most of that high-level diagnosis and treatment discussion with the residents on that first day had been. There were other patients at Mulago who I followed more closely, who I was more invested in emotionally, whose failures to get treatment that would have been given without a second’s hesitation in the U.S. felt like a personal indictment. But following this woman’s hospital course as a more distant observer let me push aside the emotional component and really think about how hard it must be to train in this system and to maintain the intellectual curiosity and commitment to learning that many of the Ugandan residents demonstrated that first day, and in all of the days that followed.

Today is my last day at Mulago. Today, as I say my goodbyes and thanks around the hospital, I will visit the 31-year-old woman with the pretty, round face and the superior vena cava syndrome. I will greet her hovering husband, smile at her toothless mother, and admire her colorful dress. I obviously cannot even begin to explain superior vena cava syndrome in Luganda, even if it were my role to do so. Even if I stole a few minutes of an overworked nurse’s time to translate, I have nothing to say. I cannot say, “you have superior vena cava syndrome, probably from some kind of tumor, and I know your doctors are doing everything they know how to do to try to help you,” because it would be a lie. Her doctors know so much but can do so little. I cannot say, “you will die, most likely without receiving any treatment, simply because I am talking to you in Kampala and not New Haven,” because it would be the truth but would serve no purpose.

I will leave Mulago knowing that I have offered her no treatment and given her nothing besides a now well-thumbed picture of her family printed on computer paper. I have taken from her a better understanding of her disease process, an unforgettable lesson in how to assess the flow through collateral veins, and, most of all, a clearer appreciation for the doctors training in a system that does all it can to defeat intellectual curiosity and extinguish hope. I will leave Mulago with mixed emotions, saddened and frustrated by the lack of resources here, but also energized to use this experience as a springboard to learn medicine as well as I possibly can for the future. I carry, I think, a new appreciation for what a privilege it is to be able to make most patient care and treatment decisions in the U.S. based on available knowledge and not available resources. The doctors training at Mulago and the patients dying at Mulago, like this young woman with superior vena cava syndrome, obviously deserve this same privilege. But I cannot say any of this to her.

And so, because there is nothing else to say, because it serves no purpose to sink into sadness, because anger without power and resources achieves little, I will push away the emotions this afternoon. She and her family will greet me warmly, as they always do, and we will exchange the now-familiar Luganda greetings and basic questions about how she is feeling today. I will explain that I am returning to the states and we will never mention the disease that will probably kill her quickly without treatment. “Bela belungi,” I will say, “be well.” As she always does, she will clasp my hand, smile, and say “Webale, musawo,” thank you, doctor. I will smile back and simply say once more, in Luganda, “you have a beautiful baby.”

Mulago Moments

The wards at Mulago are colorful, public places. Here, smells are stronger and voices softer. Patients generally bring their own bed sheets and blankets, wear their own clothes, and eat their own food, while attendants doze on woven mats between the beds and mattresses. The wards are largely open to the environment, with the riotous noise and inescapable pollution of Kampala seeping in through the huge open windows. Hallways, too, are entirely open on one side and even the ward walls in some areas are constructed of open stone latticework so that the wind regularly blows papers out of place. Today, standing on the fourth floor just before rounds began, I realized that I was being gently soaked in a fine warm mist of rain and wind. While part of me appreciated the obvious logistical problem of having rain all over the hospital floor (best evidenced by the employee who eventually appeared wearing scrubs and gaitors, attempting to push puddles around the floor toward an open drain), a small part of me was oddly thrilled by the sensation. I paused for a second, raised my hands and enjoyed the moment, so far from the climate-controlled, infection-controlled, sealed-window, fluorescent world I’ve come to associate with “hospital.”

In a month at Mulago, I’ve seen exactly one patient challenge or question anything a doctor has said or done. On one of our first days here, a young farmer who spoke good English presented to the casualty (emergency) department complaining of long-standing back pain. During a quick exam, the attending pointed out small deliberate scars on the man’s back and without consulting the patient, explained to us, “he got these from a witch doctor.” To my surprise, the patient immediately protested, “no! no I didn’t!” The attending, secure in his years of clinical experience, rebuked him: “Yes you did--what are these marks?” The patient refused to answer but simply clenched his jaw and shook his head emphatically. The attending sighed, paused ever so briefly, and subtly rephrased his explanation to us: “they’re from a traditional healer.” To my amazement, the patient’s tense expression immediately relaxed into a small, satisfied smile, and he nodded once, proudly. I wanted to grin, to laugh out loud, to shake this patient’s hand and find out more about the strength within him that demanded cultural respect in this setting where patients have so little power.

It makes me happy to see the few patients who fight, who refuse to melt into the beds. One of my favorite patients is a woman with endomyocardial fibrosis (EMF) who has been on the cardiology service since I arrived in Uganda. I liked her initially because she started correcting my Luganda grammar on the first day I met her, using rapid-fire sentences and emphatic hand gestures to emphasize plural versus singular constructions. I liked her more when I discovered after about a week that she actually speaks some English but greatly prefers making me struggle in Luganda. She’s a little pushy (well, by Ugandan patient standards), demanding to know when I will come back again, securing a promise of a picture for herself in exchange for a clinical picture of her abdomen, and it makes me smile.

If I can find time, I visit her and other patients on my “social rounds” near the end of the day. To be honest, social rounds have very little to do with medical care (though I do, for example, put my stethoscope to any cardiology patient’s chest again, willing my ears each time to remember the swish of the those amazingly clear systolic murmurs). I glance at any available charts, but mostly I’m just checking in with long-term patients I’ve followed at different points, greeting their attendants and their neighbors in the open wards, enjoying the welcoming smiles and the laughter that comes at my expense whenever I successfully butcher a new Luganda phrase. The patients on my afternoon social rounds serve as a useful counterpoint to the desperately ill patients I see on regular morning infectious disease rounds, where laughter has little place and sickness and worry consume the personalities of both patients and attendants.

Many of the people on my informal social rounds, in fact, are not even patients, which is a tribute to the amazing welcome I’ve gotten from almost everyone at Mulago. I might check in quickly with a particularly friendly nurse or nursing student or stop in to say hello to the fantastic lab instructor. I love greeting the strong contingent of relatives that sits on the hallway floor outside ward 4C, sharing food and nursing babies and waving en masse every time I pass in or out of the ward. I’ve learned how to ask easy phrases like “Who are you visiting? How long have you been here? Do you sleep here?” and am finally getting better at understanding parts of the answers, aided by those who speak some English. I never know quite where these laughter-filled conversations on social rounds will take me--last week, one of the women in the hallway offered me a booklet in English entitled “The Adult’s Secret Book—By the Auntie, Episode 1.” It turned out to be sort of a sex advice book for girls getting married, with advice on positions and practices [e.g. “most women abandon sex during pregnancy saying that the stomach is too big but please where are you sending your husband in this world of AIDS?”]. Our whole apartment is hoping that I am offered Episode 2 on this week’s social rounds! Yes, despite all of the frustrations and sadness, I absolutely love my life here.

Dealing with “the system”

Working in a system with opaque organization and limited resources takes its toll. Every day, I resist the urge to alphabetize the patient charts as I rifle through the large overstuffed cabinet that holds the dozens of files for each ward, knowing that there is some logic or at least habit there that I simply do not understand. On phlebotomy rounds with the overworked interns, I rip the stubborn cloth tape to label the reused laboratory blood tubes, silently wishing for stickers or even a pair of scissors, but knowing that the tubes need to be labeled immediately, that this is “the way it is done,” and that I am only a visitor. I want to type up a formulary for the pharmacy, to know what medications are actually available, but I’ve settled for making an ever-changing list for myself. After spending more than ten minutes one day tracking down the single blood pressure cuff on ward 4A (which holds as many as 80 to100 patients), I’ve started carrying a blood pressure cuff myself on rounds, draped around my neck like we wear stethoscopes in the U.S. I’ve also started carrying a thermometer--though it is a travel thermometer, measured in Fahrenheit, and we only use it for axillary temperatures, it is better than nothing.

I do sometimes ask pointed questions of the Ugandan nursing or medical students, if not the greater powers-that-be of the hospital. For example, I keep asking about creating a system for keeping track of treatment sheets for patients admitted “to the floor” (a literal description, meaning there are no more beds available and this particular patient gets a foam mattress on the floor). Typically we tape handwritten treatment sheets to the end of each patient’s bed listing the medications for the day, and these may be a patient’s only form of identification. When the patient has no bedframe, this all-important sheet of paper can get lost. This problem was illustrated most vividly last week by a woman in the ID ward, lying on a mattress in a pool of vomit, largely unresponsive and totally incoherent. Nobody could find her treatment sheet, and without that, nobody even knew her name. It’s not that health providers do not fundamentally care about patients, by and large; it is that any system that requires them to supervise patients in such numbers with so little support leaves them little time or energy to care.

But there is an underlying system here and a way to work that system, as much as there is at Yale-New Haven Hospital. Consults, for example, are notoriously difficult to get at Mulago and are generally directed to individual physicians rather than services. Earlier this week on GI rounds, the team wanted an OB-GYN consult for a woman with gross ascites from likely metastatic ovarian cancer. The attending instructed our team that it is crucial to request consultations only from doctors for whom you can write both first and last names on the request form (because then the doctor being consulted will believe that he or she knows you personally and is more likely to actually come see your patient). We therefore spent two minutes as a team trying to come up with the first names of gynecologists before dispatching the consult request—and, to my surprise, a consultant arrived the very next day.

It is also notoriously difficult to transfer patients between services or to get surgery involved on patients housed in the medical wards. More than once, I’ve seen this same GI team immediately discharge patients who develop acute abdomens and need emergent surgical intervention. Rather than wait days for a surgery consult that will likely never come, the medicine team instructs these patients and their attendants to leave the hospital and immediately come back in through casualty and not to mention that they’ve already spent any time at Mulago. With luck, they told me, the patient will then be appropriately assigned to the surgery team. Conversations like this happen every day, until the ridiculousness inherent in any resource-strapped system starts to seem normal.

In some ways it is lovely to work in a setting with more fluid boundaries and less attention to arbitrary protocol. The hierarchical power structures that so frustrate me in U.S. hospitals seem less rigid here, though I obviously have a limited perspective. For example, last week one of the most senior physicians in the hospital gave us, the visiting medical students, an impromptu hallway lecture on malaria pharmacology. As we stood around the chalkboard drawing enzyme reactions and parasite life cycles, a nurse came and sat down and then an HIV counselor wandered over, asking questions, free to fully join in the discussion. I just can’t imagine that happening in attending rounds in the U.S.

There have, however, certainly been times when I’ve felt personally overwhelmed by the lack of system. Earlier this week I joined a new service on morning rounds. That afternoon, I went back to the ward to see some of the patients again, to fix the details of their histories in my memory and to do more complete exams without the time pressure of rounds. I’d forgotten that in this “system” often there are no interns, or nurses, or health care providers at all around the wards in the afternoons. I walked into the open ward and suddenly, half a dozen men were calling me, sending their attendants to wordlessly hand me the precious hand-written lab results or printed ultrasounds, asking me to do something about the boy vomiting bright green bilious fluid, requesting tablets for pain relief, for nausea, for diarrhea, asking questions I could not answer. I could provide almost nothing, could call almost no-one, and have never felt more strongly like just walking out of the ward and not coming back that day. In the end, mostly to assuage my conscience, I went outside the Mulago “system” and called one of the Yale residents to help negotiate some of the more immediate questions, but the experience was profoundly unsettling.

We all trade similar moments of our experiences around the hospital, moments that are simultaneously frustrating and hilarious, poignant and disturbing. Lily laughingly told us about seeing one man with a tiny cloth hand towel maneuvering between the beds of seizing or dying or vomiting patients, reaching over sprawled attendants in the absolute chaos that is a full casualty ward, just to wipe off each light switch, for lights that do not even turn on. Kaveh told us about meeting a woman who lives in the TB ward, a woman who apparently worked for the hospital for over 20 years, developed TB nearly a decade ago, moved in for treatment, and never left. Other stories are more disturbing, like what it is like to watch a man die from an acute MI in front of you, with no code to run, and no possibilities for critical care even if that initial code were successful. There is no concept here of leaving AMA--against medical advice—in fact, the word the doctors tend to use for patients who simply give up and leave is “escaped.” The official patient form lists patient disposition options as 1: discharged; 2: died; 3: ran away! Sometimes, seeing what I see here on a daily basis, I want to congratulate the patients who choose option three.

“I did not appreciate”: learning the physical exam

At home in New Haven, I’m very comfortable taking patient histories; I enjoy helping people piece together the stories of their illnesses and thinking about the meaning of the language they choose. But here, where language barriers pose a serious issue with most patients, my mouth is largely sealed, my ears largely bound. I’ve learned some basic Luganda by now. I can ask, “Do you have fever? Cough? Pain? Weakness?” I can follow up affirmative responses with “How long?” and fumble my way through some simple questions about “better” and “worse.” I know many one-word commands for completing the exam (e.g., “take a deep breath, follow my finger, open your mouth” and most useful of all: “do this”). But by necessity with many patients I am limited to simple questions with binary yes-no answers and all of the nuances leached away. I learned how to ask the open-ended, “What is the problem?’ in my first week here but I rarely use that phrase because the flood of words that comes back is largely undecipherable to my untrained ear. And it is not just the visiting Americans who have problems; Ugandans speak more than 40 languages and Luganda is not the first language of many of the interns and post-graduates. Some of them, too, struggle with the fine distinctions of language.

Even when patients do speak English, the chronology of their illnesses can be frustratingly difficult to piece together. Almost inevitably, a patient will report that his symptoms started “some time back,” or that she has had fevers for “a long time.” I constantly rephrase, asking about last night? Last week? Last month? But in part because this is a final referral hospital--literally the end of the road for many patients who may have been fighting intractable symptoms in their homes and villages for months--I am often unable to pin down a good timeline of disease. Chief complaints can be similarly elusive, particularly in patients ravaged by AIDS. The question “Why did you come to the hospital now?” often brings blank stares, answers about money or family or transport, or, more than once, the sadly eloquent description that it is all simply “too much.”

I am unfamiliar with many of the most common diseases here and the way people incorporate them into disease narratives. One of my favorite moments on rounds on the GI service was when the Ugandan attending asked the patient why he had come to the hospital and he responded, in between vomiting episodes, “I have typhoid and malaria.” The attending laughed and told the team, “he’s probably right! Why does he need us?!” We learned on our first day on the wards that when a patient says he has “malaria,” he simply means he has a fever. Ugandans seem to think of malaria the way people in the U.S. think of the flu, or even the common cold. The disease is seen as largely inevitable, particularly in children, and is a common reason for missing school or work as well as a huge source of childhood morbidity and mortality. I had read plenty about the high prevalence of the disease in the region, but I had no sense of what the numbers meant until I started hearing house staff regularly describing colleagues “out sick with malaria,” or until our housekeeper, driver, and program coordinator all jumped to the assumption that my own subacute illness was malaria. (It wasn’t.) We visited a clinic that is following 601 healthy children under age 10, providing all of their medical care as part of a malaria study. Just in the 13 to 19 months since these children had been enrolled, 329 of them had had a total of 687 laboratory-proven episodes of Plamodium falciparum malaria. It is no wonder that fever equals malaria in Uganda until proven otherwise.

In trying to elicit histories, I have learned that a quick review of systems is crucially important. I had a ten-minute conversation with a patient who spoke very good English about her fevers and her abdominal pain and her headache. She initially denied other complaints and it was only on the review of systems that I found out that she had had a seizure the previous day and in a classic “oh by the way,” now could not walk or move her legs. I’ve also learned to avoid negative sentence constructions in my interviews; more times than I can remember, I made the mistake of saying, “so, you don’t have fever?“ The answer, inevitably, was: “yes,” and the dance of trying to understand each other began again.

For many patients, though, language barriers are the least of their worries. Most acutely ill patients are simply too sick to provide any history, and there is no computer or paper filing system to look up patient records. Some patients carry school notebooks with jotted treatment information or cards from ARV or TB clinics, others come bearing chest X-rays, or hand-written laboratory slips, or pills in small plastic bags or carefully folded envelopes. Many come with nothing at all. I saw one man in casualty (emergency) who was too ill to answer any questions. The only clue we had to his condition was a neatly typed bill from a private hospital in his pants pocket, which noted the patient was being transferred to Mulago for “treatment of ARF [acute renal failure] and financial reasons.” That was the full extent of transferred clinical information. The patient had apparently been unable to pay his bill, a bill that had grown to nearly US$100 over eight days in the private hospital and that meticulously spelled out the costs of the laboratory tests he’d gotten (including a charge for an HIV test), the drugs he’d received, and even the number of individual gloves and syringes used for his care. None of this clinical data had come with the patient, however, so we had no way of knowing his clinical course or even something as fundamental as his creatinine level or HIV status. The harried intern shook her head angrily at this lack of information and I started combing the bill, looking for clues. This patient had received insulin, but apparently only once. Did he have diabetes? Oh, but look, he had also received glucose the same day. And could this abbreviation be bicarb? Maybe the insulin had been used to help lower a critically high potassium instead? There was no way to know for sure, and no further testing available unless the family could pay for repeat blood work at Mulago.

Here, where many patients cannot even scrape together funds for a single complete blood count or chest Xray and more sophisticated imaging and lab studies are generally out of the question, we appreciate any tangible pieces of lab or imaging data even more. Most often, though, we have incomplete patient histories and outdated lab data, if any at all. We therefore turn to the physical exam, simply because it is all that is available. Patients don’t have to pay for it, it needs very little in the way of supplies, and often, it’s the only solid clue to the patient’s pathology. Even thermometers and blood pressure cuffs and the data they provide are luxuries on the wards. We listen for crackles in the lungs, murmurs in the heart, and bowel sounds in the abdomen not just as a cursory first step before CT or echo but sometimes to make treatment decisions. I’ve seen patients get blood transfusions without ever getting a CBC, simply based on pallor in their conjunctiva, on their palms, and under their tongues, perhaps coupled with tachycardia or flow murmurs. Enlarged, palpable lymph nodes provide an opportunity for aspiration (performed by the intern and therefore free for the patient) and a possible tuberculosis diagnosis.

When describing physical exam findings in the U.S., doctors sometimes use an unusual turn of phrase. Rather than saying “The patient did not have any enlarged lymph nodes,” the examiner may shift the burden of proof and report, “I did not appreciate any enlarged lymph nodes.” That phrasing has always struck me as a bit odd, but the sentiment is fundamentally true: in the U.S., we rarely appreciate or value physical exam findings. Instead, we appreciate pieces of data that give us more solid answers: the histopathology report on the ultrasound-guided biopsy; the positive antibody test; the hour-by-hour blood test; the clear visualization of a mass on MRI. We can do amazing things using technology but our physical exam skills have largely atrophied.

The doctors who practice here at Mulago know that their highly tuned physical examination skills are a strength we generally do not share and they are willing to teach. We had five wonderful afternoon sessions with one of the most senior Ugandan residents, spending two to three hours each time talking through just one aspect of the physical exam and then demonstrating techniques on patients with significant clinical findings. The time-honored medical student tradition of beating yourself up over things you don’t know is as prevalent in Kampala as it is in New Haven; it just takes a different form here because the physical exam takes center stage. I’ve been most upset with myself here when I’ve completely misinterpreted physical findings. I totally missed a spleen on a child that was so enlarged that it filled the whole left side of her abdomen and I never got underneath the edge. I misinterpreted the world’s most dramatically positive Babinski reflex as voluntary patient withdrawal (it was so dramatic that I didn’t trust it!). I may not be very good at it yet, but I have learned to take the physical exam more seriously. On call in casualty this week, one of my favorite interns sent me to examine a patient for her, and I see that she trusts my exam skills by now, even though I don’t fully trust them myself. I am hyper-aware, willing myself to listen better, palpate more deeply, since I know that she will take my word for what I find and there likely will not be follow-up studies. There is not time to ask her, “can you check this?” for every possible finding, and I worry that I am missing important clues in my inexperience.

Last week, while informally presenting a patient to a Ugandan attending as part of an extended case discussion, I finished the history and started describing what I’d found on physical exam, as we do in the U.S. The doctor stopped me and pulled me closer to the bedside. “Here,” she said, “you have to demonstrate anything you find. Show me what you did.” I fumbled my way through the neuro exam, describing muscle bulk and tone, attempting to demonstrate reflexes and grade strength, willing the reflexes to behave as I thought they had earlier in the day. She and the others around the bed watched me closely, then collectively imposed the same strict systematic attention I’d seen the Ugandan medical students demonstrate in their clinical exams. “First,” she said, “describe any fasiculations. Next, demonstrate this...” I followed her directions and she continued correcting my technique, saying “I usually hold the leg like this for checking reflexes” or “don’t forget to assess that,” and so on. In a year of presenting patients on the wards at Yale, I have never gotten that kind of instruction from anyone, never even really had anyone watch me do a physical exam. Being in Uganda, blind to laboratory and imaging data, deaf to patient histories, and therefore dependent on physical exam skills I rarely use at home, I’ve realized how much I’ve been missing and how much I still have to learn.

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.