Holy Cross Hospice opened in the mid-90s, through the Anglican Church and Rotary Club. It initially served as a support for children orphaned by the AIDs epidemic pre-ARV, but over time it has shifted to an adult day care center, offering caregivers relief and a space for psychosocial and medical support. They are working to establish an inpatient wing, but are struggling with funding. Pearl, the manager of the organization, has moved from a full time position to part time without cutting the amount of work she has to do. USAID was willing to fund childcare, but once the organization decided to focus on adults with life-limiting illness, that dried up. One Monday when I visited, the van that transports patients from their homes was broken and had been since last Thursday. They were using Pearl’s car (when she didn’t need it) for the patients with critical needs, but the rest were just stuck. I talked with one of the social workers. “We are just sitting here doing nothing,” she says. “Ah! These people,” she says, throwing her hands up in the air in a pantomime of new families discovering the gap between the promised and available care.
Case conferences continue without patients. The hope is some cash will appear to pay for repairs and everyone will get back to work. Conversations are surprisingly nonmedical. Symptoms are mentioned, but seemed secondary to psychosocial and spiritual concerns. For one woman, they discuss how to persuade her to receive care, something she refuses despite her family, physician and pastor’s arguments. For her, if God intends for her to die, she should do as little as possible to interfere. “God is sending different people to help” says Pearl, a little exasperated, “You can’t let yourself deteriorate.”
“Faith has become just the Prophet” says the chaplain, referring to the televangelist prophets who hold rallies around the country, performing prayer healing and offering God’s blessings for a low, but still surprisingly high, price.
Next door to the conference room is an art therapy cabin. On the wall are tracings of hands, with each finger framing a picture reflecting an element of someone’s life. There’s one from a 30-year old woman living with AIDS, her right leg amputated and Karpis Sarcoma (KS) in the left. The thumb is a raging storm, the index finger simply stating “botlhoko,” or pain, the middle a pair of stick finger children playing with a ball, the ring finger a wedding ring, the final finger a cow, a sign of wealth and adulthood. Each shows a tension between the reality of the woman’s collapsing condition and her hopes for the future, a tension that might be impossible to draw out in traditional counseling. If Holy Cross can help reconcile her paradoxical position, or at least open her up to see it, the organization will have done a great service, regardless of the demedicalized emphasis. The maintenance of hope is one of those universal constants of caring for those with life-limiting illness.
I’m tremendously impressed with the work of Holy Cross, especially given the instability of their resources, but I’m at a bit of a loss on the formal medical care. Psychosocial care is critical for caring for the dying, but one also needs the tools of biomedicine to deal with more mundane types of pain. Botswana has universal coverage for its citizens, but it only recently began implementing a plan for palliative care. At this point, coverage is centered in the Princess Marina Hospital oncology ward. As there is one palliative physician for the country and only a few nurses, coverage is limited. Much of Holy Cross’s work is dedicated to education, explaining what palliative care is and what it can do. This challenge is made explicit in conversations about the resources dedicated to palliative care over other treatments. With so many people sick, why focus on those likely to die?
I go and look through the national archives at the Ministry of Health’s correspondence from the late 80s through the mid-90s, at the absolute peak of the AIDs crisis, before the availability of ARVs. There’s document after document discussing the need for prevention and the potential costs, but I don’t see any documents on what is being done for those already diagnosed.
I see the corners of the answer though. Talking with people around Gabs, most mention various community home based care outfits that popped up in the 90s, funded by the Ministry of Health. But it’s unclear the scope of care. Some talk about nurses providing daily care and check ups, some say it was simply a support to family caregivers. My reading suggests that this is an area still under negotiation and development, sorting out on what scale and in what style the government will provide palliative care. I’m hoping to shadow a couple groups in the next few weeks and get a sense for myself.
Visiting another hospice, Paebelong Hospice in Mogiditshane, I encounter something more familiar. They have an inpatient ward, with hospital beds and accessible bathrooms. Again, the organization is tied to a church, this time the Gaborone dioceses. Most of the nurses are nuns, many of whom have come from India. I talk with Sunila, the manager, about where I went and what I did. She’s from Darjeeling and Bihar, neither of which I visited to my chagrin. I ask her to compare Botswana and India. Botswana is calmer and there are more places with more resources, but “there’s more freedom in India.” Why did she come here? “We go where we’re needed.”
On our tour around the hospice, I see what she means about freedom. When Paebelong opened its inpatient ward, it was the first in the country. The government required that it meet the same licensing requirements as a hospital. Sunila points out a counseling room. That’s for meeting with doctors, she says, though of course they mostly meet patients at their bedsides “but we needed it for licensing.” Same for the ambulance I notice outside. For better or for worse, in India the regulations are much more flexible.
When I think of a hospice, an ambulance seems out of place, but Sunila tells me that families often want patients to be taken to the hospital at the end. They aren’t ready to let someone just die, or believe that the doctor will save them. It’s different than the palliative care I’ve encountered before, but I’m not sure how yet. I need to see the scale of the home based care to know how it fits in. Is it more like assistance, a supplement to community or familial caregivers already in place as it was in Kerala? Is it a total care system, providing for the majority of the patient’s daily needs? It seems to me that most people die at home, in the hands of a family caregiver, or in the hospital. The in-between medicalization of a hospice doesn’t fit into the traditional, community based medicine or the new biomedical tools that have appeared in Botswana over the last couple decades. Is this another case of medicine trying to occupy a role already met by societal structures, or an absence that needs to be rectified?