Sai Hankuri

Bedside Manner and the Invisible Patient

In Niger, among individuals that value propriety, decorum, and ‘respectful avoidance’, discussions about bodies (even when they are working as they ought to be) are brief, circumspect, and sometimes conspicuously absent. Bodies, particularly female bodies, and the liquids they exude, their breast and their genitals, are seen as a source of shame and mystery. Women chuckle as they recall their first periods, remembering their fear of the blood that trickled down their thighs, assuming that something had seriously, and maybe fatally, gone wrong. Women remember how as girls of 13 or 14, they were married to men without any idea of where babies came from, or what happened between married couples. One woman shook her head and smiled “It was certainly a surprise!”

The silence is thicker when bodies breakdown, tear, or defy the norm. When women experience an obstetric complication that causes fistula, they are often sent home from clinics to discover that their bodies don’t recover as expected. They are left leaking, and often unable to walk or even stand up for months or sometimes years due to foot drop (caused by extreme nerve damage to the lower limbs due to the prolonged labor).

Their feet don’t work anymore. They are incontinent. And they have absolutely no idea why.

Most women tell me “I thought I was the only one in the world with this sickness”. Others say, “I believed that I was being punished by God”; “I believed a spirit had attacked my body”; “I had no idea a sickness like this could exist”.

So begins the long and often unrewarding search for treatment, as women move between clinics and hospitals just as fluidly as between traditional healers and religious leaders. Women go to local health clinics where if they are lucky, they will be told that they have a complication from labor, but more often than not, they are told nothing. Perhaps they are referred on to another clinic, and perhaps they are sent away with no information — with a shrug, maybe a box of unexplained (and often expired) pills, and several dollars poorer.

The women who make it past this first step (and many don’t) then enter a world of clinical negotiations and uncertainty. They are sent from one center to the next, inefficiently pinballing through the system – frequently passing through half a dozen to a dozen clinics without being given a diagnosis.

“After you realized that you were leaking, when you went to see the doctor, what did he say?” I ask. “Nothing. He gave me a paper and told me to go to Niamey”, she tells me. “He didn’t explain what you had or what caused it?” “No, he didn’t tell me anything.”

So, after months or sometimes several years of searching, they show up to fistula clinics with a large stack of loose and crumpled papers — old tests and referrals and some diagnoses scribbled in a language they don’t speak and in an alphabet they can’t read. “Vesico-Vaginal fistula with partial urethral involvement”, “Large recto-vaginal fistula” “VVF with circumferential defect”. But, despite the papers they clutch, for most of these women, when they finally make it to a fistula clinic, they’ve never ever heard the word “fistula” (or any of its local language translations) before.

Is it a paternalistic beneficence? A protection of sort? Is it because clinicians are over-worked and underpaid? That centers are understaffed? That women are ashamed to speak about their body, as often are local staff?

Or is the problem one of information retention? Potentially. If a woman was told somewhere along the line that she had ‘partial urethral involvement’ without any explanations, with no drawings, with no teaching, I can imagine that she might not fully digest the information. Still, after observing the interactions between clinicians and patients, I doubt that they are given much to ruminate on at all. “Just tell them to come tomorrow”, the clinician instructed me. “They don’t need to know any more than that”. Don’t explain the particularities; don’t explain the risks; don’t explain the contingencies.

I’ve spoken with women who stay up nights worrying about why they haven’t had their period since the catastrophic complication which caused their fistula. “During the C-Section, did they take out your uterus?” I ask. “I don’t know. Sometimes I worry that they did. But no one told me. I just don’t know”. Too frequently, after a glance at their charts or a word exchanged with her clinician, I find that indeed, she has no uterus anymore. She was never consulted. She was never asked. After everything was said and done, she wasn’t even told.

Women with fertility problems, large fibroids, ovarian tumors, severe genital tract infections, or ambiguous genitals seem to also find their way to fistula centers. Sometimes because they are leaking, and other times because reproductive abnormalities are often treated by traditional surgeons (or barbers) who haphazardly hack at a woman’s genitals – leaving them with their original problem unaddressed, but also with fistula. After an examination, these women are often excluded from the list of surgical priority – their problems are too big, too complex or too unrelated to be treated. But none of this information is transferred to her. As each surgical team passes through, and as the months pass by, she cries and wonders why she is always waiting and never called. She doesn’t know why her body is different. She’s never told why she wasn’t chosen.

Whatever their particular case, the vast majority of women with whom I spoke don’t know what they have, what caused it, how to avoid it, how to manage it, what their chances are of continence, how long they will have to wait. They are told to be patient and to wait. So they are, and they do.

Some might make the argument that it doesn’t really matter how much information the woman has about her condition. They might (rightly) argue that she probably isn’t interested in if her fistula is high or low, large or small, or if it involves her urethra. She’s interested in if she’s dry or not. Still, it is important to remember that with surgical success rates that hover between 30-40% (a contested number that I will make some future attempts to justify statistically), and are much lower for certain types of fistula than for others, a woman cannot make an informed decision if she doesn’t understand what she’s dealing with. She cannot decide if continuing to seek care, a lengthy (and often lonely) quest that removes her from her family, friends, and normalcy, is worth it. This decision should not be made for her. But everyday, with every empty consultation, it is.

The first step to empowering women isn’t sewing them up; it is giving them a sense of control over their condition and comprehension of their bodies. It is explaining the mechanics, diminishing the mystery, and thus taking the power away from the clinicians, the traditional healers, or the spirit world. Women’s abilities to understand their bodies, and to make decisions as to what’s best for themselves based on accurate information is woefully underestimated. To bank on old platitudes, information is power, and it ought to be shared.