Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic

by Julie Livingston

Overview

In Improvising Medicine, Julie Livingston tells the story of Botswana's only dedicated cancer ward, located in its capital city of Gaborone. This affecting ethnography follows patients, their relatives, and ward staff as a cancer epidemic emerged in Botswana. The epidemic is part of an ongoing surge in cancers across the global south; the stories of Botswana's oncology ward dramatize the human stakes and intellectual and institutional challenges of an epidemic that will shape the future of global health. They convey the contingencies of high-tech medicine in a hospital where vital machines are often broken, drugs go in and out of stock, and bed-space is always at a premium. They also reveal cancer as something that happens between people. Serious illness, care, pain, disfigurement, and even death emerge as deeply social experiences. Livingston describes the cancer ward in terms of the bureaucracy, vulnerability, power, biomedical science, mortality, and hope that shape contemporary experience in southern Africa. Her ethnography is a profound reflection on the social orchestration of hope and futility in an African hospital, the politics and economics of healthcare in Africa, and palliation and disfigurement across the global south.

Product Details

ISBN-13:	9780822353423
Publisher:	Duke University Press
Publication date:	08/29/2012
Edition description:	New Edition
Pages:	248
Product dimensions:	6.10(w) x 9.20(h) x 0.40(d)

About the Author

Julie Livingston is Associate Professor of History at Rutgers University. She is the author of Debility and the Moral Imagination in Botswana and a coeditor of Three Shots at Prevention: The HPV Vaccine and the Politics of Medicine's Simple Solutions and A Death Retold: Jesica Santillan, the Bungled Transplant, and Paradoxes of Medical Citizenship.

Read an Excerpt

IMPROVISING MEDICINE

An African Oncology Ward in an Emerging Cancer Epidemic

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By JULIE LIVINGSTON

DUKE UNIVERSITY PRESS

Copyright © 2012 Duke University Press
All right reserved.
ISBN: 978-0-8223-5327-0

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Chapter One

The Other Cancer Ward

In the oncology ward of Princess Marina Hospital (PMH), Botswana's central referral hospital, a light breeze is blowing the curtains in the female side of the ward. It is that cool pause in the morning before the dry heat settles in for the day in Gaborone, Botswana's capital. Ellen is sitting up in her bed, dressed in her nylon, butterfly-print nightgown, retching into a vomitus — an enormous, lidded, stainless-steel basin. Piled on the stand next to her bed are cards, boxes of juice, bananas, and other gifts from relatives and friends. The two pairs of underpants and spare nightgown she laundered in the bathroom down the hall are draped across the headboard of her bed, drying. Next to her lies Lesego, age sixty, and a former teacher. With her enormous glasses perched on her nose, Lesego is silently reading her Bible. This is her fourth year as a cancer patient, and she is used to the rhythms of the ward. She knows that soon Tiny will come, rolling the metal breakfast cart through the aisle, pouring a tin or plastic mug of tea with milk and sugar for each patient, and dishing out plates of motogo, a sorghum porridge. It isn't a Tuesday or a Thursday, so there won't be a hard-boiled egg and tiny mound of salt.

Across the nursing desk in the men's side of the ward sits Roger, age twenty, whose left eye is swollen shut from a lymphoma. He is trying with little success to drink a small carton of strawberry-flavored Ensure (a nutritional supplement), as Mma T encourages him in that matter-of-fact, joking way that nurses so often use to cajole their patients. A few moments ago, he, too, was bent over his vomitus. Already he is melting away. Strangely enough, Roger's half-uncle, Mr. Mill, a white Motswana farmer with multiple myeloma, had vacated that same bed only the evening before Roger arrived. The ward is full right now, as usual, with twenty-one patients total — one extra bed has been crammed into the female side of the ward, the only ward in the hospital that refuses to house patients on the floor.

The cancer ward sits at the end of a corridor that is lined with long, narrow wooden benches. There patients and their relatives sit waiting to see the highly impassioned and, by all accounts, brilliant, if at times irascible, German oncologist, Dr. P. Some rose long before dawn for bus or ambulance rides from villages deep in the Kalahari Desert. Others arrive from nearby urban homes, or large towns in Botswana's southeast. Many will wait five or six hours or more for their turn in the clinic office with the hospital's lone oncologist, who not only attends to an average of twenty-five (but sometimes as many as forty) outpatient visits in the day, but also manages the ward, fills out paperwork (in triplicate with carbon sheets between the copies), administers chemotherapy, and performs his own cytology in the evenings. After he climbs onto a chair in a vain but unrelenting attempt to coax the highly improbable ward television set to life, he drives home, where he will finish the day's paperwork after eating dinner.

Formerly a lawyer in Frankfurt, and a disillusioned ex–Mugabe supporter, Dr. P was already in his mid-fifties when he came to Botswana from Zimbabwe, where he had practiced oncology at Mpilo Hospital in Bulawayo for fourteen years. Leaving wasn't easy. His wife, Mma S, remains in Zimbabwe, but visits Dr. P some weekends, during which she loads up her car with supplies no longer available back home. Mma S has been around the world and has lived abroad. She knows it is one thing to travel, another altogether to leave her country (and the private ultrasound practice she has built) and live as an African exile, a lekwerekwere (African immigrant or outsider). Come what may, Mma S has decided to stay in her home.

Dr. P also writes a column, strident in tone, for one of the Botswana newspapers, using the forum to lash out against white mercenaries, Rupert Murdoch, and corrupt African politicians. He is more than willing to stand up in the staff meeting and proclaim PMH a Potemkin village! But his respect for Botswana runs deep. His sometimes explosive temper and his bluntness — so out of place in Botswana — are by turns comedic, endearing, and infuriating to clinical staff, patients, and their accompanying relatives. Dr. P is chronically impatient and characteristically relentless in caring for his patients. Some days it seems the ward is running on the sheer force of his personality; occasionally it seems that it is running despite it. Each day he brings a crate of fruit to the clinic office, sharing bananas, grapes, peaches, plums, oranges, and apples, all in their season, with staff and visitors. He always wears a white coat in clinic. He enjoys nothing more than a joke made at his expense, except perhaps a political debate.

On one side of the corridor, opposite the clinic office, is the treatment room (also called the chemo room), with its sink and metal examination table. Various supplies, such as bags of iv saline and sterile dressing packs, are stored in this room, and occasionally the doctor uses this room to hold brief counseling sessions for the relatives of terminal patients, since end-stage prognoses are rarely discussed in front of the dying. Most important, chemotherapy is administered here, sometimes with three or four patients crammed in together on makeshift seating, their intravenous lines stretching like the legs of an octopus from a pole in the center of the tiny room. When one patient begins to vomit, the others often start heaving as well, and a nurse or the visiting ethnographer distributes pieces of paper towel and plastic bags. It is hot and stuffy in the treatment room, the air conditioner having broken long ago, but staff try to keep the doors shut, for the sake of the patients waiting on the benches. For some, even a peek into the treatment room or at the tubes of "the red devil" (doxorubicin, a chemotherapy drug) is enough of a mnemonic for the experience of chemo to bring on spontaneous waves of nausea and a panicky dread.

A decade ago the cancer ward was part of the Accident and Emergency Department of PMH. But the Botswana ministry of health predicted a rise in cancer and therefore refitted the observation wing of Accident and Emergency as the country's one and only cancer ward, bringing Dr. P on staff to oversee operations. Mma M, the ward matron, bore the loneliness of leaving her husband and children in order to study at an Australian university, becoming the first — and, until recently, the only — nurse in the national health system with specialized oncology training.

In addition, a small radiotherapy outpatient practice was developed across town, at the Gaborone Private Hospital (GPH). There, two radiation oncologists see public patients, whose treatments are paid for by the government and coordinated by PMH oncology. More recently, an oncologist was brought on placement through a partnership with the Chinese government to work in the medical wards of the only other tertiary hospital in the public health system: Nyangabwe, in Botswana's second city, Francistown. Though some people do avail themselves of private doctors, particularly patients who receive medical insurance through their jobs, Botswana's system of universal care ensures that most people use the public system. As the hub of care and in coordination with these other sites, the PMH cancer ward remains the center of oncology in the country, and the only dedicated cancer ward.

Improvising Medicine tells the story of this place — Botswana's oncology ward and its associated clinic — from its birth, in late 2001, to 2009. In the pages that follow we will observe patients, their relatives, and ward staff as a cancer epidemic rapidly emerges in Botswana, reflecting the surge in cancers across the global south. The stories of this ward dramatize the human stakes and the intellectual and institutional challenges of the cancer epidemic. They illustrate how care proceeds amid uncertainty in contexts of relative scarcity. They also offer fresh perspective on cancer medicine and illness experiences more broadly.

The argument I present is three-fold. First, improvisation is a defining feature of biomedicine in Africa. Biomedicine is a global system of knowledge and practice, but it is also a highly contextualized pursuit. Everywhere, doctors, patients, nurses, and relatives tailor biomedical knowledge and practices to suit their specific situations. In hospitals and clinics across Africa, clinical improvisation is accentuated. Second, though cancer produces moments and states of profound loneliness for patients, serious illness, pain, disfigurement, and even death are deeply social experiences. Understanding cancer as something that happens between people is critical to grasping its gravity. In this respect, what I seek to make visible in PMH's oncology is not uniquely "African." Rather, it is an imperative that is often papered over or under threat in the techno-bureaucratic rituals of European or American wards, but which is nonetheless still there, beneath the surface: care. I understand care within the context of debility and existential crisis as a form of critical "sociality based on incommensurate experience," to quote the anthropologist Angela Garcia. By paying careful attention to care within the ward — how it is imagined, enacted, and distributed, the moments in which it succeeds or fails — I present an anthropology of value that conjoins the biopolitical, the ethical, the social, and the human in medicine.

Third, cancer in Africa is an epidemic that will profoundly shape the future of global health, raising fundamental policy, scientific, and care-giving challenges for Africans and the international community alike. Cancer is a critical face of African health after antiretrovirals (ARVS). As such, cancer experiences in the ward expose the unfortunate fact that biomedicine is an incomplete solution. It can simultaneously be redemptive and exacerbate existing health inequalities. In other words, there will be no quick techno-fix for African health. And yet biomedicine functions as a necessary, vital, palliative institution in a historically unjust world.

The PMH oncology ward presents a compelling microcosm of twenty-first-century tertiary healthcare in southern Africa. The expertise that supports PMH oncology was assembled, in part, from African and European clinicians fleeing economic and political chaos elsewhere in Africa, Chinese and Cuban physicians brought in through bilateral development-assistance programs, and a group of Batswana nurses still reeling from the pressures of the aids epidemic. Its establishment was prompted by the fact that cancer was an anticipated byproduct of the first national public antiretroviral program in Africa, a program designed around a public-private partnership between the pharmaceutical industry, the Botswana government, and international philanthropy. Its promise is crafted out of the social, political, and demographic imperative to care for the sick that lies at the heart of Botswana's unusually robust social contract. Its form is marked by the contingencies, grittiness, and empirical challenges of providing high-tech medicine in a public hospital where vital machines are often broken, drugs go in and out of stock, and bed-space is always at a premium. Its patients are drawn from the full spectrum of Botswana's population, where "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. And its cycles of promise and despair unite oncology's emphasis on hope with an African ethic of care that stresses continuous engagement, effort, and attempt.

Taking a cue from Solzhenitsyn's remarkable novel The Cancer Ward, about a post-Stalinist ward in Tashkent, I present the ward as both a metaphor for and an instantiation of the constellation of bureaucracy, vulnerability, power, biomedical science, mortality, and hope that shape early-twenty-first-century experience in southern Africa. And as, quite simply, a cancer ward — a powerfully embodied social and existential space. In the process I will consider fundamental questions about the political and economic context of healthcare in Africa, the politics of palliation and disfigurement in the global south, the nature of decision making in clinical conditions of great uncertainty, and the social orchestration of hope and futility in an African hospital. I will contemplate the meanings, practices, and politics of care.

AN EMERGING EPIDEMIC

For all of its awfulness, cancer may sound like an esoteric distraction from more pressing concerns in African health. Yet epidemiologists have recently described cancer as a "common disease" in Africa. This is part of a general trend in the so-called developing world, where more than half of all new cancer cases are already occurring, a situation made all the more acute given that developing countries deploy only a tiny fraction of the money spent on cancer globally. And, as health experts have repeatedly stressed, the tide of cancer is rising steadily across Africa and the global south more broadly. In Botswana's cancer ward this epidemiological shift is palpable. Dr. P wistfully remembers his first years in Botswana, when oncology beds lay empty and he cycled through other wards of the hospital actively searching for cancer patients to transfer to his ward. By 2006, when I first entered the ward, this scenario was difficult to imagine. Each year since the ward opened, patient queues have grown and pressure on bed-space has intensified. This trend persists despite programs developed to treat routine cases of the most common cancer, Kaposi's sarcoma (KS), at peripheral hospitals in the national network. But just how many cases of cancer are there, why are the numbers increasing, and what kinds of cancer are we talking about?

Cancer epidemiology is a complex business, given the expansive range of diseases under the cancer umbrella, as well as the need for laboratories with cytological and histopathological capacities to confirm diagnoses. Africa has precious few cancer registries that feed into the International Agency for Research on Cancer (IARC) master registry of data collection. Basic medical certification is provided for only an estimated 13 percent of the deaths on the continent, and gathering accurate population figures is difficult in many sites. Botswana opened a cancer registry in 1999, but problems in staffing and coordination have greatly curtailed its ability, though these difficulties are now being sorted out. Given the problems in collecting accurate data, most estimates of the burden of cancer in Africa are based on sentinel studies and on statistical models generated in a very few sites and then extrapolated to a broader population. The figures I cite, taken from a two-part report by a team of leading cancer epidemiologists headed by D. Max Parkin, therefore are tentative ones. In addition, though this analysis is recent, it is based on data that are by now nearly a decade old, so these numbers almost certainly understate the current situation. They should be read with these caveats in mind.

In 2002, the year the PMH ward swung fully into action, there were an estimated 650,000 new cancer cases in Africa. Men and women, not surprisingly, suffered from slightly different cancers. For men, KS was the most common cancer, followed by cancer of the liver, prostate, bladder, lymphatic system (specifically non-Hodgkin's lymphoma), and esophagus. For women, cervical cancer took the lead, accounting for nearly a quarter of all female cancers, followed closely by breast cancer, which was responsible for nearly a fifth of all female cancers. After these came KS, liver cancer, non-Hodgkin's lymphoma, and ovarian cancer, in descending order. Significantly, epidemiologists also noted, "The importance of infectious disease in Africa ... means that as many as 36% of cancers in Africa are infection-related, exactly double the world average."

In the southern African region, where Botswana lies, the 2002 age-standardized incidence rates were the highest on the continent: 213.7 for males and 163.2 for females. These figures calculate the number of new cases per 100,000 persons in a year, based on a standardized age pyramid, which allows for comparison across populations with differing age distributions. These rates were considerably lower than in North America, which had the highest incidence rates in the world: 398.4 for males and 305.1 for females. In North America, however, the comparatively high rates of cancer are partially accounted for by the proliferation of screening technologies that pick up early-stage asymptomatic disease. As Robert Aronowitz has argued, increasingly sensitive screening tests have resulted in what he calls "diagnosis creep" for some cancers, even as the rates for disease recurrence and fatality have remained stable. Southern Africa by and large lacks these screening programs, and as a result does not usually "count" cancers that have not progressed to the point where they produce symptoms.

(Continues...)

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Excerpted from IMPROVISING MEDICINE by JULIE LIVINGSTON Copyright © 2012 by Duke University Press. Excerpted by permission of DUKE UNIVERSITY PRESS. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Preface ix

Acknowledgments xiii

1 The Other Cancer Ward 1

2 Neoplastic Africa Mapping Circuits of Toxicity and Knowledge 29

3 Creating and Embedding Cancer in Botswana's Oncology Ward 52

Interlude: Amputation Day at Princess Marina Hospital 85

4 The Moral Intimacies of Care 93

5 Pain and Laughter 119

6 After ARVs, During Cancer, Before Death 152

Epilogue Changing Wards, Further Improvisations 174

Notes 183

Bibliography 205

Index 221

Editorial Reviews

This book will find a ready readership among Africanists and medical anthropologists. I envision its wider use in g'lobal health' courses, where it will challenge aspiring health workers accustomed to locating hope for medical development in scalable technical interventions... Cancer care, Livingston shows us—like medicine, like development—often requires starting over, usually entails improvisation, and always calls for hard labor by particular individuals in the face of destructive political and economic forces. Improvising Medicine reminds us effectively, sometimes devastatingly, how intractably human this thing called 'health care' is.

American Ethnologist - Claire Wendland

Although this scholarly work explores a harsh and distressing reality, it is well written, with a warmth and compassion that will make it accessible and appealing to a broad readership… This book will have a direct and sustained impact across fields of social sciences and medical humanities – as it can provide an important perspective often lacking within the paternalistic global health debates.

Journal of Southern African Studies - Karen Barnes

In Improvising Medicine, Julie Livingston presents a vivid ethnography of cancer management in an African hospital ward...This book is rich in textual and visual data and is theoretically well informed. It is a model of ethnographic work and an excellent monograph in global medicine and health systems research.

Social History of Medicine - Benson Mulemi

Improvising Medicine is a luminous book by a highly respected Africanist whose work creatively bridges anthropology and history. A product of intense listening and observation, deep care, and superb analytical work, it will become a canonical ethnography of medicine in the global south and will have a big impact across the social sciences and medical humanities.”—João Biehl, author of Will to Live: AIDS Therapies and the Politics of Survival and Vita: Life in a Zone of Social Abandonment


"Improvising Medicine is as good as it gets. It is a book that will be read for decades to come. I have always thought that great ethnography transcends the specificities of time and place, of the particular, to offer a glimpse of the universal. This gripping book does just that, and the subtle and grounded way that it speaks to global health and debates in medical anthropology makes it a major addition to both fields."—Vinh-Kim Nguyen, M.D., author of The Republic of Therapy: Triage and Sovereignty in West Africa's Time of AIDS

From the Publisher

This is an excellent ethnography that should (and undoubtedly will) be read and taught by anthropologists, historians, science studies scholars, and interdisciplinary scholars of Africa…. students and practitioners of global health should be reading Improvising Medicine, in which African cancer is made visible and the clinical science of oncology is never divorced from the moral labor and political conditions of care.

African Studies Review - Johanna Crane

That Improvising Medicine is at times difficult to read is a testament to Livingston’s observational and storytelling skills, her ability to allow us to imagine what it might feel like to be a patient, caregiver, nurse, or doctor in an African hospital. This is a remarkable book that deserves and will surely attract a wide readership.

Journal of African History - Neil Kodesh

"Improvising Medicine is a brilliant and groundbreaking hospital ethnography, one that grips the reader with its narratives of an institution characterized by constant precarity, where supplies, medications, procedures, and staff are never assured.... Improvising Medicine should interest diverse audiences. These include medical anthropologists, sociologists, social historians of Africa, public health specialists, and scholars across disciplines with interest in the cultures and practices of biomedicine, the morality of care, and the comparative analysis of medical ethics."

Medical Anthropology Quarterly - Carolyn Sargent

Improvising Medicine is best suited to those who are interested in global health or who provide medical care across cultures. While its primary subject is cancer, the points the author makes regarding the view of medical care priorities in resource-poor countries, as well as the culture-dependent experience of disease, are well taken and can be applied to work in other areas of the world.

Family Medicine - Holly Salzman

Improvising Medicine is an exquisite ethnography, replete with both specific, richly observed encounters at a cancer ward in Botswana and broader, urgent arguments for anthropology and global health. . . . Drawing on beautifully rendered ethnographic evidence, Improvising Medicine tells a compelling story that is relevant for anthropology and beyond.

Journal of Anthropological Research - Anne Pollock