Treatable Deaths Are Also Violence

Preface

In 2009, after completing my medical residency at a county hospital in Los Angeles I signed up to split my time between San Francisco and some of the most economically destitute parts of the planet. It was a simple calculation about where to best use my skills. In an academic medical center in San Francisco, there could be 50 doctors on one floor. If I disappeared hardly anyone would notice. In rural Burundi, there were often fewer than one doctor per 100,000 people. So, I went there.

Though I’m from a family of immigrants to the United States, I bought into the technocratic, curative lens of American medicine. The history of outsiders with medicine coming into economically poor countries is tethered to colonialism, empire and missionaries. For six months between winter and spring of 2009, I kept a journal. The writings are an attempt to unlearn and climb out of years of malicious, self-serving, or well-meaning but ineffective approaches to health care. In reality, I wasn’t equipped to witness what I saw and what I couldn’t treat.

The gradient of power is never quite as stark as the encounter of an American physician with a poor patient from a rural community in a low-income country. The inequity gap across education, race, nationality, gender, wealth, is as great as between almost any two people on the planet. At the same time the relationship between doctor and patient can lean sacred. As I listen to someone’s body or gently examine their belly, the possibility of something redemptive arising exists for both of us. What does it mean to stand in solidarity? What must be the privilege of the health worker to truly stand alongside them? The disease is a siren screaming loudly. Everyday existence and everyday poverty remain the smoke that triggers the siren.

Burundi: Late Winter 2009

I work on a small lush green hilltop in Burundi, three hours and many bumps along a dirt road outside the city. Rolling hills of green grass surround me. It is raining hard. The rain is some of the only noise here among the open fields and open sky. I work at a makeshift hospital covered by an aluminum roof, with only 10 beds, and little equipment. The region is beautiful, but the hospital is the opposite. I think of Orwell’s short story “How the Poor Die.” This is the African version some 50 years later. But before this hospital, there was even less. Southwest Burundi knew a lot of violence. During the last 20 years of genocide, significant violent activity occurred right here We now hold on to a shaky peace since 2006.

At night, I can see lights that look like a city. Across the lake, on the other side, the Congo. Fluorescent against the black sky, the lake looks like a distantly lit metropolis. But there is no electricity here. Or there. It is fishermen holding lanterns in canoes fishing. The light attracts the fish. I wonder if the fishermen can swim and if it’s scary fishing in the second deepest lake in the world on the darkest of dark nights.

There is misery, but also singing. Usually singing right alongside misery. Jos is 33 and looks like 65. She weighs no more than 60 pounds and has been hospitalized for the last two months. Her daughter looks 6 but is 8 and sleeps next to a mom who wastes away slowly. What will she do when she finally disappears? For now she sings and dances and laughs all around the compound. She poses for pictures as she sings the Burundian national anthem.

I don’t speak Kirundi, the national language. Even if I did it wouldn’t bridge the gap. Each patient I meet has lost a sibling to war or a treatable disease. I am outside of it, so far from it. But I am physically here.

Burundi: Early Spring 2009  

A lot of refugees make their way back to Burundi from Tanzania. Every day about 80 people line up to be seen at this hilltop clinic. Among the 12 hospitalized patients is Josephine who suffers from lymph nodes in her groin the size of golf balls. The nodes are hard look like large, hard eyeballs covered with thin brown skin about to jump out from her groin. She has lost 20 pounds since she arrived. We lack tools to diagnose her. We can do neither blood tests nor conduct a biopsy. It could be tuberculosis or cancer. We hope it’s tuberculosis because then there would be hope. With cancer, she will die.

I take small solace in knowing that with this degree of cancer, she would die even in the United States. Of course, more than likely, in the United States she would have been seen by a doctor before her disease got this far along. That is not true for so many diseases here – dumb diseases, easily treatable diseases. I feel like I am trying to jimmy a lock but all I have is a paper clip. The paper clip just fell on the floor in a large pitch-dark room and even if I find it, I will not necessarily be able to open the door. Even if I figure out the disease, it doesn’t mean I will be able to treat it.

Keys exist all over the world to open the door, millions of them. They cost money that we don’t have. So we piecemeal with what we have. So many doctors and nurses around the world practice medicine like this all the time and have done so for decades. I often think what I would do in the United States and then again, what I would do here in Burundi. When I ask the Burundian doctor alongside me if we have such and such medicine, he always smiles and says, “No, we are poor.”

Burundi: Mid Spring 2009

Watching a mother strap on her back her dead baby for the long walk home up the mountain . . . the baby dead from something preventable and treatable like asthma or a bee sting . . . there is nothing ever that will depress you more and make you want to work harder

The chronicity hits me daily. The trickle down, little at a time constant nature of it. The ho-hum Tuesday afternoon business as usual nature of it all. This not a famine. It is not an international emergency by international standards. It is an endless stream of children admitted with tuberculosis (TB) or malaria or HIV or just malnourishment. Cassava bread sits like a rock in their tummy but offers little nutrition.

There are some amazing folks here – the diabetic woman whom I ask on discharge how far she lives.

“Oh just there, over there,” she says, waving a vague hand.

“Can you get there from here on foot?” my Burundian colleague presses.

“Yes.” She names the city. It’s a six-hour walk.

The spectrum of my patients ranges from completely passive to empowered to completely entitled. I often feel my wealthier patients in San Francisco tilt over to the entitled side. I wish my Burundian patients demanded something from me or the health system. Maybe a meal, or a blanket, or a ride home when they live six hours away by foot and are just being discharged from the hospital. Too often, they do not.

Forty-five community health workers extend our services outside the walls of the hospital. They hand-deliver HIV and TB medications. They call to say someone in the community looks especially sick — coughing up blood, losing a lot of weight. We send our ambulance along steep, pot-holed mountain roads to pick them up. The French call community health workers accompagnateurs. The accompaniment of the especially poor. It is an antidote to despair.

We went on some home visits this past Saturday. It is the work I find most rewarding. We walk through streets and go into houses and sit on floors and talk to patients. It is the one thing we can offer for all our lack of equipment and tests.

A community health worker found an HIV patient named Frederick wasting away at home, covered in his own urine and feces, and brought him to the hospital. He was a skeleton.
After a few months with treatment and food, he shadowboxed around the compound. When he went home, his family ran away from him, thinking he was a ghost returned from the dead. They didn’t believe someone so sick when they last saw him could actually be alive. The Haitians call it the Lazarus effect – to rise up from the dead. It is these patients who keep us going.

Burundi: Mid Spring 2009

There will be a roll call of patients who die. Memorize their names. Write them down and put them in your wallet. The wretched of the earth. If you write them down and live with them and make them matter to your life and your life matters to someone and their life matters to someone, the one who died without so much as a thought in rural Burundi . . . maybe they can matter.

This Saturday I took care of a 25-year-old with shortness of breath who realized before we did that she was dying. Her brown face glistened in the sun, high cheekbones giving her an effortless sense of dignity, black hair braided carefully down the length of her back. Her lungs betrayed the youthfulness of her face and hair: TB riddled with bacterial pneumonia.

She asked to be washed clean, taken down to the dirt-floor showers and bathed before she died. It was a walk down the hill to the faucets. As her mother carefully sponged her feet and her body, she gasped for breath. With an urgency she chanted a string of names, pausing between names to catch her breath and then starting again with a string of many more. They were names for her husband to go tell she loved them. Before her breath stalled for the last time like a tired train coming into its final station, she also listed a string of names for her husband to tell that she is sorry.

I have never felt more like a witness and less like a doctor. Watching but not acting. Checking under the hood, and saying, “Sorry, we don’t have the part here.”

Patric is an 8-year-old boy with an acute abdomen. He has TB peritonitis with superinfection of bacteria. We draw pus when we put a needle in him. We rush him to the regional government hospital. The doctors are still on strike but do emergency surgery. They operate, but when we check on him a week later, he looks worse. Nobody changed the dressings. No doctor followed up.

Rwanda: Mid Spring 2009 

Last week I traveled to the neighboring country of Rwanda, infamous for the massacre fifteen years ago of one million Rwandans by their countrymen and neighbors. Leaving the capital Kigali, we drive east to a district hospital in the countryside. Every few kilometers, we see large groups gathered outside. Five to six hundred people sit or stand on red clay hardened by heat, rain and blood. It is April. The genocide took place over a hundred days starting on April 6th. We forgot what April means. We pass at least six gatherings on the 2-hour drive.

Fifteen years later government teams still uncover mass graves. Families find out slowly how their loved ones were murdered. A neighbor finally talks or an unexpected revelation emerges from an acquaintance. And then maybe, hopefully, closure.

I go to round with the doctor. Three hours for 45 patients to be seen by one doctor. Cerebral malaria, miliary TB, full blown AIDS, peritoneal TB. They admit 23 patients for acute psychosis monthly during the spring. So many people breaking after so much suffering. Patients often lie two to a bed. We see an orphan from the genocide, a young girl who starts sobbing uncontrollably at our approach. April is not a good time of year.

Burundi: Late Spring 2009

Burundian question and the standard answer:

Question: How many children do you want to have?

Answer: As many as God provides. And God provides a whole lot of children. But as he giveth, he also taketh away. He definitely taketh away.

Two children die this week of malnourishment. Their hair reminds me of Pan African flag, but a lighter red and black as the pigment fades from undernutrition. Nearing death, they seem almost ready to surrender. Their cries turn meeker, and initial irritability transforms to listless passivity. A child who cries loudly is one we can trust to keep on keeping on. I can count all the ribs on each child. Before these two children, I tended to the very sick but never dead. Always to the brink and back. These two are the first ones I have seen die.

Some die in their asleep, finally fatigued by some infection we can’t name but that surely would not have killed them if they were not so weak. But these two are violent deaths. A look washes over the tiny face. Eyes gape into I don’t know where. Labored breathing. It is like the eyes haven’t told the lungs that they are gone. And the lungs and the chest are still grasping for life.

I am haunted by our collective failures. One dirt road after another brown dirt road. Isolation and potholes and puddles and then suddenly a small lone town and in that town, a wooden hut. And in that wooden hut, a Coca Cola. Or a Fanta. Refreshing as usual. Orange or Lime. In every single country in every remote setting I have worked, on the bank of Lake Victoria in Tanzania, a refugee camp in South India, Southern Mexico in the mountains, Coca-Cola has figured out a way to deliver the same product consistently. Health professionals fail to figure it out. We run out of PlumpyNut, the fortified peanut-based food used for malnutrition. Of course, PlumpyNut is the end of so much that didn’t happen for kids to die of malnutrition. Skin peeling, bodies wasted, these two started to eat and I thought they were getting better. And then Tuesday and Wednesday, they died — back to back. They died gurgling, drowning in their heart’s new food, flooded and unable to circulate the nutrition they need.

The reverse brain drain will be simple interface technology that is applicable here. Solar energy to run the hospital, cell phones that record patient data for and can be used by community health workers. Electronic web-based medical records in the poorest of settings. Stand-alone, hand-held machines that do all kinds of labs. All cheap enough to not exclude the most destitute. I am grateful for the African scientists and mobile technology engineers working towards this reality. In the face of so many preventable and needless deaths, the bridge to use these tools here can’t come fast enough.

Burundi: Early Summer 2009

The hardest thing this week: a 60-something woman with a dirty button-down green shirt. She opens her shirt like she has fake Rolex watches to sell. Underneath the shirt a festering mass. An open crater of pus, and blood as if someone detonated a small explosive in her right chest wall. A putrid wound-mass masquerading as breast. She has had breast cancer for 6 years. She has watched it grow and wants something other than antibiotics to treat her cancer.

There is no chemotherapy here, no biopsy to diagnose the cancer that has no chemotherapy. There are no oncologists here to give the chemo that does not exist. I guess I knew that before I came.

There are huge work-force issues here. Only 75 or so doctors for 8 million Burundians. Doctors leave. Nurses leave. To Rwanda to South Africa, to Belgium, to France. Anywhere but here. Many of our nurses haven’t finished secondary school. The ones who have are in Rwanda. The doctors in the public hospitals are on strike because they make 100 dollars a month. Without the tools or the support to truly explore the possibilities of their craft they open up private clinics.

Our Burundian doctor is amazing – 32 years old and the top of his class. He tells stories of fleeing 4th grade, running through the forest as rebels gunned down his classmates. His father was killed during the civil war. He memorized as much medicine as he could during class since there were not enough books to go around. He knows a helluva lot. We are not sure how long he will stay. I can tell he is getting restless. He is tired of working so hard and being so smart but still poor.

At 8pm on a Wednesday, the oldest woman in the 12-patient ward sings in a hush — a prayer in Kirundi. I stand behind the door waiting to go in. It is the most beautiful sound I have heard for a long time, a longing mixed with despair rising into beauty.

Post-script

In July 2009 I pushed up my flight out of Burundi to make a close friend’s wedding in New York. A few weeks later, on a blue-sky Monday morning, as our health team drove the slow, bumpy dirt road up the steep hill from the capital to our rural hospital, several people ambushed the car. I had traveled that round many times, week in, week out. This time, rebels or thieves or just drunk men murdered the driver, Claude Niyokindi, his blood spattering the Burundian doctor who worked alongside me for all those months. The doctor, a national treasure, fled to Lesotho, where he now practices, afraid to return home.

I know that I am running a sprint, while local health professionals are running a marathon. Since my time in Burundi and Rwanda, I continue to do health justice work in the Navajo Nation, Liberia, Mexico, Haiti and India. I wanted to build a program that trains and transforms health professionals to better serve deeply marginalized populations. In 2015 I started Health Equity Action and Leadership (HEAL), a two-year capacity-building program that aims to build a community of like-minded health professionals. We now have 102 HEAL fellows, half of whom are Native American or from low-income countries. Our fellows work in 17 sites around the world, in 9 different countries, seeing nearly a million patients in some of the poorest places on the planet. This is why I came into medicine, to make common cause with my patients and to treat the black, the brown, the poor, the nameless and ultimately, myself.