My contact with the Botswana Retired Nurses Society (BORNUS) is its chairwoman, Joyce Tamocha. She is a retired nurse, though as I’ll come to find out, that doesn’t mean she isn’t busy. Joyce worked in a variety of healthcare roles for the government until her nominal retirement in 2006, but now she’s at the clinic in the Maruapula school in Gaborone. Her main patients used to be old people and babies, so caring for teenagers has been a shift. On a cabinet in her clinic is a white paper with “Please note that an observation has been made that some students use the clinic in order to bunk tests.” She needs a of diagnostic exam for required for exam-shy students.
Joyce invites me to visit BORNUS’s campus, right outside Gaborone in the village of Tlokweng. There are a couple small buildings built out of converted trailers, with a few examining rooms and offices, a small library and a daycare for children. I’m introduced to the Director, a woman with the same face as my grandmother to an eery degree, her smile matching through a different skin color.
She offers me a brief history of BORNUS. It originated as an interest group in 1999, with the initial hope of establishing an elder home, but after the emergence of “the scourge of AIDS” and a call for action from the President, the nurses decided to step up and help. Now they try to meet a diverse set of needs, from daycare for orphaned children and children of ill parents, alcohol and drug rehabilitation, support for grandmothers, and, most relevant to my work, home based care and palliative care.
All of these programs are reliant on a patchwork series of grants, recited off the top of the Director’s head, but which I would need a flowchart to track. There’s an inherent instability to the system. Breaks in funding cause staff to leave, or year to year arbitrary shifts in sponsor’s mission goals create whiplash between different priorities. A group will pay to build a new day care so the client capacity is increased, but won’t pay for more teachers. Sometimes when funding runs out, the Botswana government will provide bridging funds, but these are temporary, just to cover a short term gap.
Right now, palliative and home based care are unfunded, which means Evelyn Tsae, the retired nurse heading these programs, and her team are currently working without any pay. Medical supplies come from local clinics in exchange for BORNUS identifying and monitoring at-risk patients. The BORNUS home-based care team does community outreach and patient evaluation, referring relevant cases to a government social worker that coordinates with the clinics. My sense is BORNUS is one of several organizations helping to integrate the national healthcare system, filling in gaps of resources and monitoring.
I’m told I can come back in a few days around 9 AM to join in on home visits. I make the mistake of showing up fifteen minutes early. The only car BORNUS owns had to go to the bank this morning, so we’re going to have to wait. I sit in Evelyn’s office, half of a converted trailer, with the heater on blast, listening to the winter wind whip around outside.
Finally, at 10:15, the car is back and we’re ready to leave. We drive out the gate, but then realize it’s teatime. We head back, and I’m served full plate of food, sausage and bread and muffins and tomatoes, which I eat by myself in BORNUS’s library. A bit more than tea time. I try to eat fast so we can get on the road, though when I step outside, everyone is still snacking in the truck Time to leave for real, though when I get out, everyone else is still snacking. Two hours after our original schedule, we head out to see patients.
I need to be careful here, because Botswana is a very small country and what wasn’t identifying information in Kerala is in a village with as few people as Tlokweng. So rather than going through specific cases, I’ll give a few general impressions. The cancer cases had progressed much further than anything I had encountered before, necrotic flesh and a lost ear. A man needed a bandage change, but we lacked hot water and, it turns out, bandages. The emphasis seemed less on medical care than on talking with caregivers, especially where the patient had a long term disability like a head injury.
We head back to the clinic and I debrief with Mma Tsae. We talk about the patients and she comments on how few resources are available, the fact they have to share transportation across the whole organization, the financial instability and uncertainty. She ask me, “can you make any difference? Is this just your studies?” I feel a twist in my gut. I’ve often heard this question in Botswana. It places me in a bind. On the one hand, there is a long history of colonialist approaches to aid, white foreigners coming in and offering high tech, expensive medical knowledge that is unworkable in the Botswana context, or well-meaning agencies offering two year grants and then leaving BORNUS high and dry. On the other, what am I doing here? Isn’t there something exploitative coming and poking around, writing my notes to further improve myself as a person but giving nothing back? Explaining that I have the money to travel for a year, but somehow can’t help buy a car? I am apologetic, offering a suggestion of an NGO that offers grants, aware that it this is totally inadequate. 1
Within this unresolved tension I also see problems that have nothing to do with scarce resources. When I visit, all the local clinics on which BORNUS depends for basic medical equipment are rationing the supply. While the Ministry of Health has allocated resources for this year’s gloves, diapers, etc., they are still negotiating contracts with suppliers. Apparently, this is a yearly problem with shortfalls every March through July.
Without government support, simple building blocks of medical care, like disposable gloves and adult diapers, can be prohibitively expensive for donation based organizations. But these shortfalls aren’t seen across the board. During my time in Botswana, I heard a recurring theme: why spend for the dying in a nation where so many are sick? Reports from folks working around HIV/AIDs clinics suggest that that care has a high level of coordination and follow through, and the decline in the infection rate agrees. And in a country focused on development, with limited resources, children are a higher priority. Don’t get it twisted, there’s a concerted government effort to improve palliative and home based care, but there are a lot of competing priorities and right now palliative care just isn’t at the top.
There’s also complicated set of cultural, economic and biomedical relationships at play that’s worth trying to tease out. There’s the fairly common a cultural aversion to telling people they are going to die,2 believing that doing so will at best remove the will to live and at worse curse them with death. But there’s also the ways biomedicine’s capacities and limitations are understood. Julie Livingstone’s phenomenal book Improvising Medicine discusses the particular anthropological understanding of oncology in Botswana. At the peak of the AIDs crisis, ARVs arrived with an almost mystical power, returning people to something like normal lives. A simple pill regimen, staving off a societal collapse. But post-ARVs, people suffer from diseases with less clean solutions:
“…patients like Lovemore Makoni [a cancer patient] face a situation in which the oncological cutting edge keeps edging up costs and therapeutic intensity with what are sometimes only marginal payoffs for metropolitan patients, while patients in impoverished contexts are often ignored wholesale for lack of funds. In middle-income countries like Botswana patients receive care from clinicians like Dr. P [a German expat, the only oncologist in the country at the time] who are buckling under the weight of growing caseloads, while struggling to adapt metropolitan knowledge, technologies, and goods to African biological, technological, institutional and economic circumstances.”
As a medical specialty, oncology, while offering tremendous relief of suffering and longer lives, lacks the clarity one often finds in treating infectious diseases.3 Some forms of cancer can be pushed into remission, sometimes even cured, but with many cancers, it’s a task of extending life by weeks, months, years, often in a diminished capacity. This is especially true in Botswana, where the limitations in medical integration mean cancers are often detected later, when reversing course is nearly impossible. Biomedicine tends to be more attuned to frameworks of acute than chronic conditions, something also at play in metropolitan nations. Add in the limitations of resources scarcity and, as Livingston describes it, communicating that nothing more can be done is read as a refusal or a condemnation, rather than a limitation of economics and science.
Palliative care grew out of oncology, and some of the challenges in Batswanan palliative care can be seen as reflections of oncology’s struggles. Even at BORNUS, patients on the palliative service are viewed as sad lost causes, described with phrases like “isn’t it a pity.” The idea of palliative care as a support for other care hasn’t taken root, and its role in assisting processes of dying is often constrained to pyschosocial support for caregivers. The problem of pain is something that biomedicine offers tools to address.
But perhaps I’m just in a limited frame, bringing with me metropolitan notions of how dying should happen. Sure, these cancers are new to Botswana, but death isn’t. The angles from which I have understood death have been hospices and biomedical institutions, but everyone acknowledges most death happens in the home here. Who am I to say there isn’t adequate support? Perhaps this is a classic example of a Western model of medicine creating a problem, and then offering up a solution. Three months in Botswana, and all I know is that I don’t know.
1. In my final conversation with Mma Tsae and the Director, they asked me to reflect carefully on any criticisms I may have. A Ministry of Health official had come by and warned them to keep an eye on what I write. Often foreign researchers publish about how terrible the medical care is, without any regard for the resource-scarce context. I try to put them at ease and explain what I see as the reality, that I see a collection of people coming out of retirement to try to help their community, hamstrung by inadequate money and administrative challenges. But I also have to note that there are other challenges not related to resources, but to prioritization. That’s what I’m digging into here, but try to keep in mind that there are a lot of people trying to cover a lot of bases in a nation that is just stabilizing from one of the worst epidemics humankind has every faced. The HIV/AIDs epidemic brought the Botswana average life span down by over ten years. The fact they have universal medical coverage still shows a degree of good governance and national spirit the US would do well the imitate. ↩
2. The notion that a doctor has an obligation to inform the patient is actually a relatively recent development in Western medical ethics. ↩
3.Okay, some cancers are tied to infectious diseases, an ontological distinction Livingstone draws out in considering which cancers are “visible” to the biomedical view of Africa. Really, it’s a very good book! Also has a stunning chapter on pain as imagined and crafted in the Batswana community. Worth your time, 5/5. ↩