ELKHART -- Rose Kiwanuka is the national coordinator of the Palliative Care Association of Uganda, an organization that partners with the Center for Hospice and Palliative care of Mishawaka. She visited Indiana last week. In meetings with hospice workers she shared her experience working in Uganda.
Q. What is the Palliative Care Association for Uganda?
A. The Palliative Care Association of Uganda began in 1993 in Kampala, Uganda's capital city. Kiwanuka got involved with the association and wanted to be able to serve a broader population. Kiwanuka's goal is to provide "palliative care for all Uganda."
Q. Why palliative care?
A. For Kiwanka's patients, cure is not always possible. There is only one radiation center in the country and doctor-to-patient ratios range from one doctor for every 50,000 patients in rural areas to one for every 32,000 patients in urban areas. So, most patients have to travel long distances to see a health care worker and wait times are long . When these hurdles make cure impossible, Kiwanuka says palliative -- or hospice -- care can relieve symptoms and distress, allowing the patients to live with dignity to the end.
"At least care," Kiwanuka said. "Caring is possible."
Q. What are the PCAU's main challenges?
A. The palliative care association attempts to serve an entire nation with a very small staff -- just Kiwanuka and one other worker.
"The vision is palliative care for all Uganda, but right now it's just Rose for all Uganda," said Roberta Spencer, director of support services at the Center for Hospice. She was in Uganda in March.
Also, Kiwanuka has to deal with infrastructure problems, at times having to hike into communities that have no roads.
Q. How does the PCAU overcome these challenges?
A. The Palliative Care Association of Uganda works with a number of non-governmental organizations to share the patient load. They also work with a team of volunteer nurses who work in rural areas, at times walking to the hospital on behalf of a patient, describing the symptoms and bringing home medicine.
The partnership with the Center for Hospice is another mode of confronting these hurdles. Spencer said that Hospice hopes to raise money to expand Kiwanuka's staff.
The two agencies also share ideas.
"It's not just what we can do for Rose, but also what can Rose do for us," Spencer said. "We have much to learn from them: how to live simpler and be more appreciative of what we have."
For her part, Kiwanuka has enjoyed seeing the systems of care that the Center for Hospice uses. Not all of them meet her agency's criteria of affordability and cultural sensitivity, but some do, like the way a general physician works with patients and other doctors over time.
"Collaboration and networking are something we can take back home," she said.
Q. What's next for Kiwanaka?
A. Kiwanuka will continue to meet with the patients and staff of the Center for Hospice and Palliative Care over the next week. After she returns to Uganda, Kiwanuka plans to report on her trip at the next PCAU membership meeting.
"I think that will give them encouragement," she said. "It's good to know that there are people out there who care about what we are doing."