‘It’s not just about dying’: Uganda’s pioneers of palliative care undaunted by huge challenges
Morphine was first introduced in Uganda 30 years ago, but as the burden of cancer increases, thousands of people still lack access to even basic treatment or pain relief.
About 70% of the 2,000 patients on Hospice Africa Uganda (HAU)’s programme have cancer, and some are HIV positive, too. Few can afford tests or treatment for their conditions and, even when they can, it is not uncommon for doctors to misdiagnose or fail to prescribe adequate pain relief. Often, by the time a patient is referred to HAU, their condition is incurable, much to the frustration of the team, whose goal is to offer palliative care from the moment a person is diagnosed with a life-limiting condition.
“One of our biggest challenges is to remove the stigma [around palliative care]. Some people think it is about dying, but it is for anyone with a chronic illness that is not going away,” says Antonia Kamate Tukundane, programmes manager at HAU’s Mbarara site in south-west Uganda. “Palliative care focuses on holistic care: How are you? How is your family? What other things are affecting your illness? We provide something the doctors and nurses have no time for.
Dr Anne Merriman at home in Kampala. She founded Hospice Africa Uganda in 1993, with a vision to introduce “palliative care for all in need in Africa”
“Sometimes the patient comes to us very ill and passes on, but if we had known the patient earlier we could have explained what was happening to their body; agreed on realistic goals; all this is so helpful for the patient. Those who find us are glad they did.”
Source: The Guardian, 6 March 2023