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Yale J Biol Med. 2008 September; 81(3): 147–150.
Published online 2008 September.
PMCID: PMC2553654
Reflections from the Global Health Front: The Whole Patient
Audrey M. Provenzano
Yale University School of Medicine, New Haven, Connecticut
To whom all correspondence should be addressed: Audrey M. Provenzano, E-mail: audrey.provenzano/at/gmail.com.
 
On my first day in Uganda, I went to the hospital early to join the team on rounds. I wore my bright white coat, wrinkled from the long trip, and my stethoscope was looped around my neck. I wanted to learn some clinical medicine and hoped that my modest research project might yield useful data for my Ugandan advisors. The team gathered around a patient’s bed. The young man, called Emmanuel, sat silently with his legs buried in the folds of a red blanket. I watched Dr. Sadigh’s hands deftly percuss his lung fields, outlining an area of consolidation in the right lower lobe. “You should feel a difference in the tissue, not just hear it,” he said. A novice in the world and language of medicine, I understood only a few stray words as Dr. Sadigh conducted the exam and discussed the clinical significance of each finding with the residents. When he was done, he stood, resting his hand gently on Emmanuel’s shoulder, and asked the team for its thoughts. Lobar pneumonia. Tuberculosis. PCP. There was talk of ordering a chest film and sending sputum samples for analysis. Would it be possible to get a CD4 count? The ultimate arbiter of health at Mulago Hospital encroached on the conversation — cost. A CD4 count was out of the question. Could this patient afford the $6 chest X-ray? Caroline, a Ugandan intern, spoke in dulcet, muted tones as the rest of the team strained to hear her: “He has a positive blanket sign. He can probably afford a chest film.”
Mulago Hospital is the national referral hospital of Uganda. Anyone can seek treatment at Mulago, but each patient must pay for all of his own tests and most of his medications. Each patient also must supply his own bed linens. Some patients rest propped up on pillows and under sheets and wool blankets. Some wrap themselves in a single cloth; others lie on a bare plastic mattress. The house staff at Mulago uses a patient’s location along this spectrum as a crude indicator of what studies and therapies he may be able to afford. The professors who teach physical exam at Yale had instructed me to look for this sign. “Take in the whole patient,” they said. “Do not focus solely on the patient’s physical findings or chief complaint.” Their words came back to me that first day in Uganda when we assessed Emmanuel’s red blanket.
Caroline quickly recorded the team’s assessment and plan for the patient on a sheet of loose-leaf paper, slid it back into the pink tagboard chart, and placed the chart on the bed. Her hand lingered, giving Emmanuel’s leg a squeeze while she whispered a few words of explanation and reassurance in the local language, Luganda. The team had already moved on and gathered around the next bed.
Just past midday, we reached the bed of our final patient, Ruth. Lying next to a window, she leaned against the cool cement wall, eyes closed, letting her left arm dangle out into the sunlight. The Mulago medical complex sprawls atop one of Kampala’s precipitous hills, so beyond Ruth and the women washing clothes in the hospital’s yard below, I could easily distinguish the stately white buildings of Makerere University’s campus across the red clay of Katanga valley. The angry shouts and blaring horns of impatient motorists on Bombo Road drifted up to us as we stood around Ruth’s bed. Ruth had been admitted for a sickle cell crisis. Normal red blood cells are round and strong but pliant, easily bouncing and wheeling along with each heartbeat through arteries that branch into capillaries so miniscule that only one cell can pass through at a time. But in Ruth’s red blood cells, a change in a single amino acid weakened and deranged the proteins, giving the cells the two pointed corners and oblong body of a sickle. Like the motorbikes and pedestrians blocking the way for cars on the street below, the sickle cells wedged into the capillary beds in Ruth’s joints and back, depriving her tissues of oxygen and causing her excruciating pain. Discussion of Ruth’s management was tepid and brief; there is little aside from hydration and pain management that can be done for a sickle crisis. Ruth barely stirred as the team dispersed for lunch, briefly opening her eyes when Caroline tacked a saline drip on the wall next to her bed.
The next day I went to see Ruth. According to her chart, Ruth was exactly my age and a student at Makerere University. I was curious to learn more about her. Today, she sat upright with a book open in her lap and a pen in hand. She greeted me with a smile and invited me to sit with her for a bit. A student in the economics department, she planned to apply for a job at a bank or in the government after she graduated. “I’ve had to miss quite a lot of school from being sick; I hate it, I hate being in the hospital,” she said, a strong edge of anger in her voice. “It disrupts everything. I can’t plan my studies. I am always missing class and important meetings and events at school. My friends try to understand, but they don’t.” Ruth paused and looked out the window. “And coming to the hospital is pointless,” she sighed. “There is nothing they can really do for my disease.” I nodded as I listened. Ruth’s frustrations closely echoed those I had heard from other patients suffering from intractable chronic disease. She turned and looked directly into my eyes as she continued. “The worst part is that every time I come to the hospital, I see someone die — and I am terrified that next time it will be me. There are never enough nurses or doctors or medicines here.” I nodded again at this manifest truth but was unable to meet her gaze; instead, I looked out the window at the women hanging laundry in the yard below. Wind caught the brightly colored cloths, and they curled out from the lines in slow waves.
Ruth was admitted three more times over the summer for sickle crises, and each time I went to see her. She was very curious about how my research was progressing and always asked how many patients we had managed to enroll to date. The study, like any other, was beset with technical and logistical problems at the outset, but after a few weeks, we managed to resolve those issues and began collecting data. Raymond, my translator and research assistant, had an open nature and easy laugh that quickly won the trust of patients. We used a lengthy questionnaire to collect most of the data, so we sat and talked with each patient for some time.
One rainy afternoon in late June, Raymond and I interviewed a patient named Kenneth. Kenneth had endomyocardiofibrosis, a disease that is unheard of in the United States but quite common in Uganda. Fibrous tissue had covered Kenneth’s heart and coated the inside of his peritoneum, causing his abdomen to swell with fluid. Very little is understood about the etiology or pathogenesis of EMF, except that it is a disease that afflicts the impoverished. Dr. Ssezi, an internist at Mulago and an expert on the disease told me, “I have never seen EMF on the sixth floor of Mulago, except when elevated there by marriage.” The sixth floor of Mulago is a private floor where patients pay daily fees even for a bed, and treatments and medications are far more expensive than in the rest of the hospital.
Kenneth and Raymond spoke in Luganda. I listened intently but lost the conversation after a few exchanges, so instead I studied Kenneth. He sat on a bare mattress on the floor and leaned against the wall. Raymond had recorded his age as 25, but Kenneth could have passed for 12 or 13. He was very small, and his face had the soft roundness of a child’s. His enormous abdomen pressed against a few buttons that tenuously held a green cotton shirt closed just below his chest, while the rest of his stomach erupted through the two halves of the shirt, which hung haplessly to each side like curtains. Angles defined the rest of Kenneth’s body. His legs stretched out from his round stomach, two thin, brittle lines, briefly widening at his box-like knees, and then meeting his feet with an abrupt 90-degree turn. His sharp elbows cut triangles into the air as he gesticulated, answering one of Raymond’s questions, and then they laughed together, joy set loose into the air.
Raymond concluded the interview, and I folded the questionnaire and wedged it into the bulging pocket of my white coat. I clumsily thanked Kenneth in Luganda, then hesitated, saying, “I had never heard of EMF before I came to Uganda. Can you tell me about your disease?” Raymond translated. After much amusement and an accusation of scholarly delinquency, to which I readily confessed, Kenneth answered my litany of questions: “The swelling does not hurt, but it is bothersome and restricts my ability to walk around and cook or clean; the swelling first started about a year ago; and no, no one else in my family has it.” Kenneth unbuttoned the few buttons that held his shirt closed and motioned to my stethoscope, indicating I should listen to his heart. I did. He took my hand and pressed it into his round stomach. I palpated the soft fullness of his abdomen. He lay on his back and then turned onto his side, so I could percuss his stomach and detect the shifting dullness of tone that occurs when the bowels float in a sea of fluid inside the peritoneum.
That night, sitting in bed beneath the white gauze of my mosquito net, I wrote about Kenneth in my journal. I wrote about his protuberant abdomen and his description of how the swelling evolved, how clearly the timbre of percussion rang out over a loop of bowel, and how dull and flat it sounded over fluid. A few days later, I wrote about Tony, a patient with Tetralogy of Fallot, a constellation of four congenital heart defects, whose boot-shaped heart I sketched from his X-ray and labored breathing and terrified mother are forever seared into my memory. The next page is filled with a description of Margaret, a young woman with SVC syndrome. A mysterious mass in her chest compressed the vein draining blood into her heart, so her face, neck, and arms had swollen so drastically that she could not hold her 4-month-old daughter. Instead, the infant slept in Margaret’s lap.
In medicine, it is often said that our patients are our best teachers. I did not understand the truth of this statement until autumn came and I returned to the classroom in New Haven. When we studied sickle cell anemia in hematology, I thought of Ruth, her description of the unrelenting pain in her joints and the stack of economics books at the foot of her bed. A pulmonologist delivered a lecture about pneumonias, and I pictured Emmanuel under that red blanket and remembered the differential diagnosis that Caroline, the intern, had recorded in small, angular letters in his chart. What I learned in Uganda comes not from graphs or tables, but from memories of faces and laughter and tears. It comes with memories of how lung fields full of pus feel and sound beneath my fingertips. It comes with memories of family members waiting anxiously at a loved one’s bedside for the team’s diagnosis.
This autumn, I walked to the hospital through piles of red and yellow leaves to see patients, again wearing my white coat and my stethoscope looped around my neck. After a summer spent in a hospital where poverty is inescapable and imbues every medical decision, where physicians debated the necessity of every test and every medication, Yale seemed a world apart. Physicians ordered blood chemistries and films and procedures without much thought of cost; sealed dressings, sutures, and surgical supplies were thrown away unused. Yes, cruel health inequalities exist in New Haven; barriers to care are insurmountable to many, most especially to the poor. But the poverty in Uganda was of a different breed. Patients routinely died of readily preventable, treatable, and even curable conditions: malaria, AIDS, routine infections, childbirth. If a patient could not get to the hospital, he would get no care at all. Everyone knows this, of course, and I knew this before I went to Uganda. But this knowledge now has a different quality to me; it is raw and visceral. I met patients who suffered and died unnecessarily. They died simply because of where they were born.
My journal is now full of lessons that my patients have taught me, patients whom I met in Uganda and here in New Haven. I still read and memorize charts and graphs and listen intently in lectures; but I now understand that until I have the memory of a patient’s face and his own words describing how a disease feels, I have not yet learned any medicine. More importantly, I understand that my patients have much more to teach me than simply medicine. The patients I met this summer taught me about the cruel and unforgiving power of poverty. The words of my professors come back to me again, as I flip through the pages of my journal. “Take in the whole patient. Do not focus solely on the patient’s physical findings or chief complaint.” I am beginning to understand what this means.