Lord of the Crabs

A review of Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic, Julie Livingston, Duke University Press, 2012.

Improvising Medicine describes everyday life in a small oncology ward in Botswana, a Southern African country that has been decimated by HIV/AIDS and that now faces a rising cancer epidemic. AIDS, disease, heat, stench, misery, overcrowding, scarcity, death: the picture seems familiar, even cliché. But Julie Livingston warns (or reassures) her reader at the outset: this is not the book on Africa one has learned to expect (or to dread). As she notes, “the problems of pain, death, illness, disfigurement, and care that lie at the heart of this book are basic human ones.” This is, in essence, a book about human nature in the face of insufferable circumstances. It is told in the way anthropologists tell a story: with a concern for the local, the mundane, the quotidian. Improvising Medicine is based on an extended period of participant observation and hundreds of pages of research notes jotted down after long hours of assisting care workers in their daily chores. The particularities of ethnographic observation are reflected in the excerpts of the research diary that are inserted in the book, with the names and proclivities of each patient and coworker who, in the end, become familiar figures to the reader as they were for the fieldworker. And yet, between the localized setting and the universalist message, there are some conditions and lessons that pertain to Africa as a whole. The cancer ward in Princess Marina Hospital in Gaborone, Botswana’s capital, is referred to as an African oncology ward in an African hospital. The author routinely writes about an African ethic of care, about the defining features of biomedicine in Africa, or about the articulation between African practice and global health.

The local, the regional, and the global

Of these three overlapping planes of observation, the local that characterizes a specific cancer ward, the regional that makes it distinctly African, and the universal that is common to all humanity, let’s start with what is specific to Botswana. In the early 2000s, at the time of the book’s writing, the country had only one hospital ward dealing with cancer patients, with twenty beds and few medical equipments—radiotherapy had to be practiced in a private clinic nearby. It had no medical faculty or university hospital, and doctors had to be trained abroad or brought in as foreign experts. Botswana’s inhabitants looked up to neighboring South Africa as a place with more sophisticated and powerful medicine than was available in their country. On the other hand, Zimbabwe, Botswana’s eastern neighbor, was spiraling into a crisis of dramatic proportions, and patients or doctors who had previously relied on its health system were forced to look abroad. Unlike apartheid South Africa or dictatorial Zimbabwe, Botswana was and still is characterized by a robust social contract that has sustained a stable democratic life and steady economic growth. For over four decades, Botswana’s political leadership has proven remarkably adept, patient, and forward thinking in charting the course of development, stability, and peace under challenging circumstances. Botswana is the untold success story in a continent that is often associated with civil wars, military dictatorships, and continuous economic decline.

These characteristics of Botswana translate in the country’s health system. Healthcare is provided as a public good for citizens under a program of universal care. Most people rely on the public health system and pay only a minimal fee for its services, although the cost of transportation and hospitalization falls heavily on the poorest households’ budgets. Botswana’s democratic regime and relatively equalitarian society ensure that “Bushmen from the Kalahari lie in beds next to the siblings of cabinet ministers, and village grandmothers sit on chemo drips tethered to the same pole as those of young women studying at the university.” Its small population and dense communal life also ensures that “everybody knows each other,” and this familiarity among patients and with caregivers humanizes the illness experience. A day at the cancer ward usually starts with prayers in Setswana, the national language, as most of the nurses are devout Christians. Nursing in the oncology ward is an extension of the state’s commitment to care for its people, a manifestation of a national ethos of care and compassion, and nurses are expected to embody these deeply ingrained values. Unlike other places where nurses might look down on their poorest patients, in Botswana social differences are mediated by an equalitarian ideology, and many nurses make a point of resisting claims for extra resources (more bed space, time with the doctor, nursing attention, preferential treatment) made by the most elite patients.

Living with HIV/AIDS, dying from cancer

Of course, this picture of Botswana’s health situation wouldn’t be complete without mentioning AIDS. Botswana lives in the shadow of the HIV/AIDS epidemic. Nearly a quarter of the adult population is HIV-positive, which means everyone has intimate knowledge of AIDS and its suffering. Antiretroviral therapies, distributed free of charge by an arm of the national healthcare program, have transformed HIV/AIDS from a deadly predicament into a chronic disease. People have learned to live with HIV; new terms have entered the local vocabulary, such are mogare (worm) to designate the virus or masole (soldiers) to refer to the CD4 count. Immunodeficiency increases the risk of co-infections by hepatitis, tuberculosis, but also certain forms of cancer. Co-infection with HIV renders cancer more aggressive and prognoses more ominous and uncertain. Before ARVs were available, many of Botswana’s patients died with a cancer, but from other AIDS-related infections. Since 2001, when Botswana’s ARV program began, however, many patients have survived HIV only to grapple wth virus-associated cancers made all the more aggressive and difficult to treat by HIV co-infection.The experience of cancer (kankere) has been grafted onto an already complex health situation. “If only I just had AIDS” was the ironic refrain the author heard repeated many times by the cancer ward’s patients.

Whereas HIV/AIDS originated in Africa and is often associated with the continent, popular opinion rarely associates cancer with Africa. According to Julie Livingston, many factors contribute to make cancer in Africa invisible: statistics are scarce, detection equipments are lacking, patented drugs are expensive and tailored for rich countries’ markets, and clinical knowledge is often ill-suited to African contexts. In addition, powerful interests conspire in perpetuating scientific ignorance about cancer in Africa: the mining industry often denies occupational exposure to uranium radiation or asbestos, and the African continent is targeted as the new growth market by tobacco companies. Cancers often go undetected until they have reached terminal stage, and then again they are not reflected in mortality data due to poor registry infrastructure. The paradoxical result is the shocking visibility of cancer among African patients. Readers are reminded that “while cancer with oncology was awful, cancer without oncology could be obscene.” A visit to the oncology ward conveys a vision from hell: the author’s fieldwork notes include descriptions such as “a friable mass of bleeding tissue eating its way into the vaginal wall and the bladder,” “a black swelling on the sole of her foot which had begun to ulcerate,” “throats blocked by esophageal tumors,” or “the necrotic stench of tumors that have broken through the skin and exposed rotting flesh.” It is this rot, and its accompanying stink and sight that in earlier decades made cancer an obscenity in North America and Western Europe. Very often, at this late stage, the only solution is brutal surgery: too many breasts, legs, feet, and testicles to be removed in a single day makes the author note in her diary, with grim humor: “It’s amputation day at Princess Marina Hospital.”

Invisible pain

Cancer in Africa is made invisible; similarly, pain among African patients is negated and marginalized. Pain is what propels many patients into clinics because they can no longer endure it on their own, yet many clinical staff are reluctant to use opioids and palliative care even for patients who are dying, despite long-standing WHO protocols encouraging their use and low-cost availability of morphine, codeine, and pethidine produced by the generics industry. This economy of pain is not only limited to Africa: the Global South, which represents about 80 percent of the world’s population, accounts for only about 6 percent of global consumption of therapeutic morphine. But the invisibility of pain in Africa takes on a particular racist twist: it is widely believed that Africans are less sensitive to pain, that they are more forbearing than whites and thus bear their pain in silence, and that they even smile under duress, laugh at pain’s expression, and make it a matter of ridicule. Racial ideas about pain are inherited from the colonial period and the slave trade, with its long history of forced labor, corporal punishment, and dehumanizing psychology. But African reluctance to perform pain loudly is also understood as a function of culture, as when African women laugh at the foolishness of white women moaning and screaming during childbirth, or in reference to initiation ceremonies when young adolescents had to endure beatings and suffering in silence in order to cross the threshold to adulthood. In the cancer ward observed by Julie Livingston, pain may be spoken of, but rarely screamed or cried over, and patient silence is interpreted as a sign of forbearance. But nurses are carefully attuned to nonverbal cues, reading facial expressions and bodily contact to gauge pain. Pain, even when it is repressed, denied, or laughed at, is a thoroughly social experience.

Efforts to socialize pain point to a wider lesson: disease is not only what happens to one person, but also between people and at the level of social interactions. Although cancer produces moments of profound loneliness and boredom for patients, serious illness, pain, disfigurement, and even death are deeply social experiences. It is sometimes said that we’re born alone, we live alone, we die alone. But from the moment we are born until we take our last breath, we are enmeshed in webs of social relations: we are never alone. This social embeddedness of life and disease that the author makes visible in Gaborone’s hospital is a defining feature of medicine beyond the African context. It is also what characterizes nursing, care work, and the ethics of therapeutics whatever its location or cultural context. Improvising Medicine is therefore a book with global relevance. Even the fact that improvisation is a defining feature of biomedicine in Africa can be generalized to other contexts. Confronted with life-or-death decisions, doctors always have to improvise in the spur of the moment, make choices under imperfect information, and even triage patients by determining who might get treatment and who might be left without medical attention. Of course, doctors are supposed to memorize procedures from books and follow rules. That’s why they attend medical school for so many years and pass stringent tests to be sure they know exactly how to handle each medical emergency according to the standard procedure. But an ordinary day in Princess Marina Hospital shows us life never goes by the book: doctors may be aware of the ideal way to deliver a certain treatment or to perform an operation, but they don’t have the equipment, staff personnel, infrastructure, or administrative support necessary to follow SOPs.

Third world conditions

Improvising Medicine reminds us that global health issues are indeed global, and that cancer, like medicine itself, is neither an exclusively African problem, nor a particularly Western one. The future of global health is shaped in large part by events and trends occurring in developing countries. The cancer epidemic is rising steadily across Africa and the Global South more broadly; it is aggravated by the fact that 40% of all cancers are associated with chronic infections. Co-infections are not limited to Africa: it is an important dimension of the current COVID-19 pandemic, as being already infected by a pathogen increases the sensitivity and morbidity to the new virus. But make no mistake: the situation in Africa is different. In a hospital that lacks a cytology lab, an MRI machine, endoscopy, and mammography, diagnosing and curing cancer is an impossible mission. The forms of cancer tumors that grow and blossom, exposing rotting flesh and necrotic stench, should never be allowed to develop. Critics sometimes claim that healthcare in North America or Western Europe has declined to third-world levels. They point to the long queues, shortage of equipment, and insufficient health coverage to denounce unequal access to medicine and rampant privatization of public services. The detailed description of an oncology ward in Africa should give them pause.