BUGIRI, UGANDA — Zawlence Nabirye grabs her throat in excruciating pain from a bed at Bugiri General Hospital, the region’s main referral hospital.
“She has not had a proper meal for a while now due to the throat cancer,” says Namukwana Kauda, Nabirye’s daughter and main caregiver. “Everything she eats, she throws up. I have tried giving her fluids, but it is not working. She also stopped talking seven days ago, so it is difficult to communicate.”
A nurse agrees. She says that Nabirye should have morphine. But while this two-story hospital looks good on the outside, the care provided inside is often anything but. Patients complain that the roof leaks, but a far more serious problem is the hospital’s lack of pain relievers.
Joyce Mutibwa, a nursing officer here, says they do have access to mild pain relievers. “But it does not give relief like morphine would,” she says.
There’s no morphine at the surrounding health centers either.
Ugandan hospitals, especially in rural parts of the country, often lack powerful pain medications and other palliative care that gravely ill patients like Nabirye need.
Patricia Lindrio, GPJ Uganda
Palliative care can improve patient quality of life as they face life-threatening illnesses, whether that be through pain control medicines or counseling on legal or mental health matters. With 40 million people worldwide in need of palliative care, the World Health Organization has named the lack of access to it one of the greatest inequalities in global health.
Only about 10% of Ugandans who need palliative care receive it, according to the Ministry of Health’s Annual Health Sector Performance report for 2014-2015. The Palliative Care Association of Uganda reports that number increased to 11% as of April 2019.
But the number of people who need palliative care is increasing, due to a rise in diseases like diabetes and cancer. Yet government health officials say limited staffing due to restructuring national and regional referral hospitals is preventing an adequate response.
“The journey for palliative care has been very long,” says Dr. Jackson Amone, commissioner for clinical services at the Ministry of Health. “A policy on palliative care has been developed, but it got a snag somewhere.” He adds that strengthening national palliative care is currently the agency’s biggest challenge.
But for the agency to meet care objectives outlined in its Sustainable Development Goal commitments, made in line with the United Nations targets, something needs to change.
“To achieve our universal health coverage goals, the need for palliation needs to be addressed,” he says.
Meanwhile, government funding for palliative care and programs supporting it have been slashed. The proposed Uganda Cancer Institute budget for the current fiscal year, 2019-2020, decreased by nearly 34% over the previous year, from 91.192 billion Ugandan shillings ($24.9 million) down to 60.631 billion Ugandan shillings ($16.5 million).
A variety of health care organizations have petitioned parliament over these reductions. One of the petitioners, Mark Mwesiga, programs director at the Palliative Care Association of Uganda, says as Uganda began to meet its goals of decreasing new cases of HIV/AIDS, international funding for palliative care is harder to find. There is a greater reliance now on government support.
Patricia Lindrio, GPJ Uganda
“Palliative care was mostly for AIDS-related cases. Donors have pulled out and this directly affects our services,” says Mwesiga. “There is need for government to increase direct funding for palliative care services in future national budgets.”
Meanwhile, there are real consequences for patients.
Namaganda Mwamiri, 32, is a widow with seven children. She suffers from a tumor on her jaw that causes daily throbbing pain, headaches, earaches and intermittent bleeding. Mwamiri’s tumor could be removed, but she cannot afford the operation. So she receives palliative care in her home through Hospice Jinja, another local palliative care organization.
“I was very relieved when I started receiving medicines from Hospice Jinja, as now my disease does not control me. I can move, do some light chores,” says Mwamiri. “I don’t know how I would be living without this help.”
Hospice Jinja makes do with limited funding from the Irish government and local donors. As the only palliative care provider in Uganda’s eastern Busoga region, Hospice Jinja serves 700 patients annually, like Mwamiri and Sarah Gladess Kitasara, who suffers from a vulvar tumor.
Kitasara has been in excrutiating pain for years. Now, her daughter and caretaker, Scovia Namanga, says palliative care services have been heaven sent.
“She is not in pain all the time, this has brought a lot of relief to me,” Namanga says. “But mostly to her. She lives more peacefully now.”
There are still more than 2,000 people in the area in need of palliative care services.