How Uganda became an advanced nation in palliative care

Abstract

Uganda is the only low income country to attain “advanced” status in a global ranking of palliative care services, just one place behind the US. Yemisi Bokinni reports on what other countries can learn Abigail Simon-Hart has seen the deaths of both her mother and her brother, in very different circumstances. “I grew up with a mother who had cancer four different times, all unrelated,” she says. “Four different times the doctors told us it was terminal, that there was nothing they could do—and she lived for 33 years after the last time they told her she was going to die.” Simon-Hart’s mother died of leukaemia in an Australian hospice in 2013. She recalls, “I was quite shocked as to how much say we had in everything, how much say she had in everything. She got to do some of the things on her bucket list—whatever made her feel slightly more normal within some reasonable level, they were allowed to do. And that kind of humanised everything.” Almost a decade later, in 2022, her brother died after complications from surgery in Nigeria. He remained on a ventilator in the intensive care unit for two and a half months until he went into cardiac arrest. There had been no discussion of what might happen if things didn’t go well, considering his multiple pre-existing comorbidities, and no DNR (do not resuscitate) order was in place. “I don’t blame [the doctors], because I think they honestly thought they could save him. I really think that they felt they were acting in his best interest,” Simon-Hart reflects. “I wasn’t going to tell them to switch the machine off, and that was the trauma. You’d go there and say, God, please either heal him or take him.” The extent of global inequalities in palliative care …