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.”