Why many people in rural Uganda don’t go to the doctor
by Lorien E. Menhennett
Quick, decide: your health, or your children’s education?
No one should have to make that choice. Yet that’s exactly the choice one of the Naggalama Hospital palliative care patients had to make when he was told he had cancer and needed treatment at Mulago, the government hospital in Kampala. He said the only way he could afford this potentially life-saving cancer treatment was to sell his bicycle. But without the bicycle, his children couldn’t attend school. This father made his choice last year — his children’s education — and this year we saw that his cancer has spread.
This is a common story among patients I’ve met here. Someone is diagnosed with a serious illness. The disease has often already progressed because people here frequently don’t seek medical attention when first becoming ill (the subject of my research project). Once diagnosed, the person is usually referred for treatment at Mulago. Often, they don’t go. Or they delay. The reasons for this are complex, I’m learning.
Some people fear Mulago, and not without cause. For starters: it’s an enormous hospital, 1,500 beds, I’m told, with a census that can reach 2,500. Those extra patients sleep on the floor. (Although renovations are now underway in an attempt to fix the overcrowding, and when I visited Mulago I didn’t see any patients on the floor.) Lines are long. Drugs are often out of stock, so the patients’ attendants have to search for medications elsewhere in Kampala. There are few doctors, fewer nurses, and many mosquitoes.
People’s fears are sometimes based on misunderstandings, though. I heard one woman say that she was initially afraid to go to Mulago for a mastectomy because she had seen other women get the same treatment and die soon after. It is likely that those women died because they presented late for surgery and their cancer was too advanced — not that they died from the surgery itself. Because of such fears, people may seek treatment from local herbalists first. When that doesn’t work, they finally go to Mulago. By then, it is often too late.
Beyond the fear, many patients simply can’t afford the treatments at Mulago. One woman told me that after she was diagnosed with breast cancer, it took her family two years to gather the funds so she could have surgery and appropriate chemotherapy at Mulago. I heard about another woman who barely scraped enough money together for her chemotherapy treatment, only to be told after the treatment that her funds covered only one dose. She would need many more doses, the Mulago doctors said — something she hadn’t understood. She couldn’t afford it. So she just stopped going. Her cancer has now progressed too.
Like so many things here, I don’t know what the solution is. Medical care here is cheap compared to in the United States. So it’s easy to say “I’ll pay for this patient’s chemotherapy” or “I’ll pay for that patient’s surgery.” Obviously though, one person or one group can’t pay for everything and everyone. I know being here makes a difference in some people’s lives. The patients all say that. They are grateful beyond belief. But it’s hard to avoid a sense of frustrated futility sometimes.
Certainly understand your frustration and sadness! Guess I will have to cling to the starfish story where a little boy was throwing starfish back in to the ocean one at a time. (With the beach covered with thousands of starfish). A man asked him how he could possibly hope to make a difference with so many starfish on the beach. The boy picked up another starfish, threw it into the ocean, and replied, “It made a difference to that one.”
Even though you couldn’t solve everyone’s problems, sounds like you and your team did make a difference to some individuals. And perhaps with the research, there will me more far-reaching changes. Maybe palliative care will have to be more of a focus when the cancer treatments we take for granted here are not available. What did Hippocrates (or someone else) say? To cure sometimes. To comfort always?
Does seem so sad and unfair to have such differences in access to care in the world. Guess we must not lose sight of other people’s suffering both here and around the world and do what we can to change that.
Thanks for the thought-provoking article!
You’re right — we definitely did make a difference in many individual people’s lives. And hopefully, the work that Randi and Howard do (and that the rest of us helped with this summer) will give the local palliative care team tools to help them be more effective and efficient going forward. And in that way, the work can help even more than those individual people we saw this summer.
And thanks for reminding me of the starfish story! Definitely something to remember.