Home-Based Palliative Care in Mbarara, Uganda

Henrietta Afari

Resident in Internal Medicine at MGH

PGY-3

Home-Based Palliative Care in Mbarara, Uganda 

“When my life is finally measured in months, weeks, days, hours. I want to live free of pain, free of indignity, free of loneliness”.  These were the words of a hymn sang daily at the start of the morning staff meetings at Hospice Africa Uganda (HAU) where I visited on my last day of my month-long clinical rotation in Mbarara, southwestern Uganda.

I met with Annie, the coordinator at HAU at around 7am. Annie had kindly arranged to have me (and Paulie, a visiting resident from Oregon) visit their office and learn about the work they do in Mbarara. On arrival, we got a tour of the site, then joined the staff on their brief daily morning meeting, which included a prayer and a hymn (see picture included). Shortly afterwards, we had Ugandan tea with the staff, which apparently also happens daily. Within an hour of being on site, it was clear that community and camaraderie was deeply valued at HAU, perhaps driven by the overwhelming sense of the need to support each other to accomplish the work they do. Annie then gave us a brief overview of the program, during which I learned that whereas at its inception in 1993, HAU cared for primarily patients with HIV/AIDS, most of their patients now had cancer, which, counterintuitively, became associated with fewer funding options.

Around 10am, we set off for the patient’s homes, arriving after going up steep, muddy slippery slopes to rural farming hillside communities just outside Mbarara. We were guided by Antonia, a seasoned, indomitable palliative care nurse who guided us through the visits. We saw a total of three patients that afternoon: a 90-year old man with metastatic prostate cancer, a 70-year old woman with debilitating pain from rheumatoid arthritis and a 35 year old with metastatic breast cancer. In every home we visited, we were greeted by warm, expectant and appreciative family members, often assembled in the living room, looking on and participating actively as we delivered care.

Antonia would take her history and exam in a delicate and caring manner, documenting in great detail in their health notebooks. She also triaged a fair amount, discussing a sedentary patient’s asymmetric leg swelling with us, and after communicating my concern for DVT, recommended the family take the patient to the nearest health center for further management. After review, we would discuss the plan with the patient and families, and dispense medications. Antonia and her team carried along a small suitcase filled with all kinds of medicines (from various analgesics to skin ointments to antibiotics). The founder of HAU had to lobby to have non-physician clinicians prescribe drugs to allow nurses like Antonia prescribe these drugs. A notable grievance expressed by Antonia was the lack of physicians on their team; a deficiency which significantly limited their ability to effect any meaningful practice or policy change on the larger healthcare platform.  Another challenge was access to liquid morphine, the wonder drug. I had learned earlier that day that liquid morphine was re-formulated and packaged by HAU, and was now free in Uganda, thanks to strong campaigning by the leadership of HAU. It was remarkable how the quality of life of severely debilitated patients improved dramatically once they had access to the liquid morphine. Antonia told me that for some families the transformation almost felt like a miracle. Sadly this miracle was only available to patients within 25km radius of Mbarara where HAU covers.  

Interestingly, for some patients, feeling better often translated to new hope for cure. More than once, patients asked Antonia if Paulie and I were there that day to offer a second opinion on their disease conditions. I asked Antonia if patients and their families truly accepted hospice care or if there were any challenges limiting full buy-in. It wasn’t clear to me if, in a culture that so revered death to the point of eschewing its wanton mention, goals of care and/or code discussions were or could be had. One of Antonia’s answers surprised me. She stated that the community’s response to their work was complex, and appeared to march along socio-economic lines: the poor seem appreciative of the care received, arguably resigned to their ‘fate’. The rich, on the other hand, appear to be more resistant to hospice care, presumably because they have access to more advanced therapeutic options.

When we returned to the HAU offices from our home visits, I was impressed by the work of HAU in Mbarara, though recognizing how much work was still yet to be done.  I am also eager to learn more about ways to leverage this care delivery model in areas with poor access to facility-based care.