How the data obfuscate surgical outcomes for obstetric fistula.
As the call to prayer reverberated in the thick, dust-filled evening air of Niamey (Niger’s capital), my field assistant, Rahmatou, and I idled in the hot car on our way home from a long day of interviews. Both of us were lost in our thoughts; both discouraged by another round of failed surgeries. “If you had to guess, what do you think the rate of surgical success would be for women with fistula here in Niger?” I asked her. Her laugh was brief and acerbic, then she sat quietly for a minute, thinking. “Ten percent,” she told me, her eyes becoming serious. “I don’t think it could be higher. I can count on both hands the number of women we’ve spoken with who’ve gone home dry.”
Fistula, a birthing injury caused by prolonged obstructed labor, affects poor and vulnerable women in the Global South where emergency obstetric care is often difficult to access and of poor quality. Women can labor for several days with little to no access to interventions like Cesarean section or forceps delivery. Of the women lucky enough to survive these battles with their own bodies (and with the health care system), fistula leaves an estimated 50,000–100,000 each year incontinent, and presumably socially devalued.
For approximately 15 years, the United Nations Population Fund (UNFPA) (as well as myriad private and state-funded organizations) has offered free surgeries to women across the Global South, promising to restore their continence and their social, emotional, and psychological health. “After the operation, the women are completely transformed,” Reuters quotes a UNFPA official (Lazareva 2017). “They become beautiful, smiling—they start their lives again.” Thanks to the goodwill and scalpels of Western benefactors and biomedicine, women are said to emerge “like a butterfly from a chrysalis” (Hamlin 2001).
In an oft-repeated story of biomedical potency, hope, and redemption, medicine rights the harms societies inflict on their most vulnerable citizens. Such is the story of obstetric fistula, as projected by the international media and humanitarian organizations. But, is reparative fistula surgery really “so easy to do” (Lazareva 2017)? And if the stitches do hold and the tissues do mend, does surgery really change lives? Following 18 months of ethnographic research at four fistula centers in rural and urban Niger, I find this transformative narrative deeply misleading. For the 100 women with fistula whom I came to know, repair surgeries were extremely difficult to procure and frequently unsuccessful. Yet the narrative of surgical transformation persists due to the deceptive veneer of numerical empiricism. As a result, women’s experiences of surgical failure (and the substantial associated costs) are rendered invisible.
The social life of data
Fistula surgery is commonly reported by humanitarian and media outlets to “cure” fistula in around 90 percent of cases (EngenderHealth 2017, the Guardian 2014, Women Deliver 2017). In contrast, of the 61 Nigerien women who underwent surgeries during my research period (many women did not due to extremely long wait times), only 36 percent achieved restored continence. This 36 percent struck me as notably poor odds. Initially, I was dismayed. Eventually, I found an unsettling and alarmingly pervasive explanation.
A Nigerien ministry of health epidemiologist revealed to me that our raw data, our inputs, were quite similar. Our outputs—surgical outcomes—however, couldn’t have been more different. As Joel Best cautions in his book Damned Lies and Statistics (2001), statistics are social artifacts not “hard facts.” Numbers confer legitimacy, and as such are disseminated (and sometimes fabricated) by invested parties, broadcast by the media and donor organizations, and consumed by the general public. Repeated and republished, they become reified as fact, despite their often-tenuous connection to the phenomena they purport to explain.
Fistula surgery’s widely cited 90 percent success rate may not reflect actual outcomes, but rather an effective endpoint of a narrative. As Alex de Waal concluded of conflicting truth claims over violence in Darfur, “When narrative confronted data, narrative won” (2015). The same might be said of fistula. By inflating the number of “successful” cases and deflating the total number of surgical cases, Nigerien stakeholders can make strong claims about the power of surgical intervention and the potency of their fistula centers. Such claims justify funding within a humanitarian marketplace defined by urgent problems and increasingly effective solutions.
Inflating “successful” cases
There is little international consensus on exactly what surgical “success” means, leaving room for clinics’ own strategic interpretations. Following surgery, a woman’s fistula may be successfully closed, yet 33–50 percent of women whose fistulas have been surgically closed will still leak urine (Browning and Menber 2008). This “continence gap” (Wall and Arrowsmith 2007) can be caused by lasting damage to the bladder, urethra, or ureter sphincter. A woman may still leak then, but technically no longer have the anatomical hole that defines the condition. In such cases the surgery may be classified as a success, thus inflating the efficacy of the procedure and the center.
Similarly, the choice of when to measure success (or failure) is deliberate. For more favorable results, treatment outcomes may be determined immediately following the procedure, rather than at a follow-up appointment. Weeks after her operation, a woman’s repair may break down and her incontinence return, yet according to the data her case is recorded and interpreted as a surgical success story.
Deflating the number of cases
Fistula centers may also systematically deflate the total number of cases, thereby increasing total success rates. For example, some centers in Niger divide the number of “successes” not by the total number of operations or even operated women, but by the total number of women who have left the center in a set period of time. Given that women whose operations fail tend to wait at centers in hope of undergoing another surgery, this approach distorts outcomes.
Centers may also alter the units of measurement, calculating the total cases by number of women rather than surgeries. This has the effect of masking these repeated surgical failures as well as the time women wait for multiple surgeries.
Finally, centers control their data by limiting who is eligible for surgery, prioritizing the most straightforward cases (more likely to succeed), while continually postponing surgeries for women with complex fistula. One woman I knew with a particularly complex fistula had been waiting for surgery at a Niamey center for six years.
How do these choices and calculations lead to notably distorted surgical “success” data? Let’s say one woman undergoes four surgeries in one year. The first three operations result in neither closure nor continence. In the fourth surgery, her fistula is successfully closed. Luckily, she is finally dry. Is this a case of one closure, one woman, and thus, 100 percent success? Or, is it one successful surgery in four with a 25 percent success rate? Maybe her fourth surgery closes her fistula but cannot restore her continence. In this scenario, is it 100 percent success, 25 percent, or 0? What if this woman, still incontinent, stays at the center for a second year and a fifth surgery? Since she didn’t leave the center in year one, perhaps she (and her four previous surgeries) do not even make it into the calculations for the year. These four surgeries, this woman, become statistically invisible. Given enough cases and enough data, it is easy to see how these different methods of calculating, manipulating, and reporting data could turn a 20–40 percent success rate into 80–90 percent.
The social costs of data manipulation
So, why does this data manipulation matter? During my time in Niger, women underwent their first, second, fifth, and even eleventh surgeries only to be left with a persistent trickle of urine. Enveloped in a miasma of their own waste, and with their future fertility in question, it is easy to assume that women with fistula invariably become social pariahs within their home communities. And most media and humanitarian organizations do precisely this. Following an obstetric catastrophe, incontinent and with uncertain reproductive futures, these women are presented with a devastating set of eventualities by the standard media and humanitarian fistula narrative: divorced by their husbands and exiled from their communities. Yet, in contrast to the standard narrative of rejection and abandonment, for many of the women I came to know, it was not fistula itself that caused the greatest social harm. Too often, it was the prolonged search to cure it.
While these women wait at fistula centers for increasingly improbable surgeries, their social lives disintegrate as the months, years, and sometimes decades pass. Their husbands move on and remarry; their plots of cultivatable land are taken over by others; their social circles shift—dynamics calcifying in their absence. Soon, women with obstetric fistula have little social space to return to. Ever hopeful, influenced by claims of biomedical effectiveness, many women fail to fully comprehend the real price they’re paying for these surgical “gifts” until it’s too late.
When I first spoke with women at the centers, many had already been resident for months and sometimes years, averaging 5.8 months and ranging from two weeks to six years. Forty-four percent of women had undergone three or more previously failed fistula repair surgeries, a lifetime total of 278 surgeries among the 100 women. For the 36 percent of women who identified as separated—technically still married but living apart from their husbands and uncertain about their marital futures—these long waits and repeated surgeries matter. In their absence, husbands remarry co-wives who push for the divorce of “sick” wives.
Dr. Youssoufou, a Nigérien fistula surgeon, explained:
You have seen that there are women who’ve left their homes two or three years ago, most husbands won’t wait that long. There are some women who have been looking for treatment for 15 years. So, it is clear that it will cause a separation, and the husband of course will take another wife. … Often, it isn’t the fistula itself; it is the absence that can cause divorce.
As 34-year-old Hanatou put it, “One day, even if your husband loves you, if you are not there, one day he won’t be comfortable with you. He will listen to what your co-wife, his family, or your neighbors say.”
When data are manipulated, the months women have waited, the physical pain they’ve endured, the opportunity costs of treatment-seeking they’ve paid, and the social harm they’ve incurred are rendered invisible. In turn, the escalating surgical and hospitalization costs borne by medical institutions, public health infrastructure, and development and humanitarian organizations also remain largely unseen and unrecognized. The mounting expenses in time, effort, and dollars of these “low-cost” interventions, which are often said to take as little as 20 minutes and cost $300 (Kristof 2005; 2009), may be drastically underestimated. The former executive director of the Worldwide Fistula Fund explained to me that the “real cost” of a fistula surgery was probably closer to $1,700. In the end, funders spend between 5 and 51 times Niger’s gross national index (GNI) of $370 per capita on women’s surgeries, the majority of which do not work. Still, media outlets including the New York Times and Reuters report that fistula repair is inexpensive, “so easy” (Lazareva 2017), “transformational” (Kristof 2012), or “life changing” (Lafraniere 2005). Surgery is framed as a medical and social panacea.
I learned that sometimes it is only when women abandoned their quest for continence that they find peace. After 20 years and 11 failed surgeries, 35-year-old Ladi finally gave up hope for a cure and turned to fresh hopes: acceptance, family, and a loving marriage. When we last spoke, she was at home with her husband and new child. With effort, she managed her incontinence. In contrast to the decade she had spent seeking surgeries, her marriage and young daughter brought her social status, pride, and deep satisfaction.
The allure of the white coat and quick-fix solutions has blinded us to who these women are and what they want. The realities of fistula treatment in sub-Saharan Africa require a new approach: a heightened focus on prevention, a critical gaze on a health system that continuously fails rural women (and funds for structural improvements), and increased investment into the innovation of new (or reinforcement of already existing) appropriate technologies and management strategies for fistula as a chronic condition. If decades of anthropological inquiry into biomedicine have taught us anything, it is that the promised quick fix rarely delivers.
Note: Pseudonyms are used throughout this piece to protect women’s identities.
Alison Heller is an assistant professor of anthropology at the University of Maryland. Her book Fistula Politics: Birthing Injuries and the Quest for Continence in Niger will be published in 2018. You can follow her work at ali-heller.com.
Cite as: Heller, Alison. 2018. “The Hidden Harm of Surgery.” Anthropology News website, January 24, 2018. DOI: 10.1111/AN.740