By Violet Ikong
Tegegne Tamiru lives in Addis Ababa, Ethiopia’s capital city. He is 42 years old, the father of two children, and has been battling HIV/AIDS since he was 34 years old. When he fathered
his children, he had never been tested for HIV/AIDS.
“It was when I had a health failure, and needed to undergo surgery, that the doctors did some tests on me and discovered I had both HIV/AIDS and diabetes,” Tamiru said.
Tamiru’s health did not improve after surgery, and he was forced to stop working. “Since I could no longer go to work, it was difficult to make money to take care of my health.”
By 2021, his condition had deteriorated. His body was weak, he experienced neuropathic discomfort, and he was unable to perform ordinary tasks at home.
But Tamiru’s family did not give up on helping him and reached out for help to Hospice Ethiopia.
Huge need on the continent
The organization offers community-based palliative care, including medicine, supplies, and counseling to patients suffering from chronic, incurable diseases such as HIV/AIDS and cancer. It was founded in 2003 by Tsigereda Yesfawosen, serves the entire country, and is located in Addis Ababa. The outpatient program has cared for over 170 patients since 2003. Hospice Ethiopia is the country’s sole nonprofit hospice organization. By contrast, the U.S had 4,840 hospice agencies in 2019.
Stephanie Council, who volunteers for Hospice Ethiopia, said, “There are a lot of governmental and private resources that are given to hospice services in the U.S. You have hundreds of nurses working for one hospice organization program and hospice care is easily available here.”
In 2020, about 37.7 million people worldwide were estimated to be living with HIV/AIDS, and a record 680,000 people around the world died from HIV-related illnesses the same year. Over 25.7 million people on the African continent were living with the virus as of 2018. The World Health Organization (WHO) has determined that Africa is the continent most affected by HIV and accounts for almost two-thirds of the global total of new HIV infections. An estimated 752,000 new cancer cases, which is about 4% of the global total, and 506,000 cancer deaths occurred in sub-Saharan Africa in 2018.
Hospice Ethiopia’s care model
Patients are divided into three groups based on their circumstances and are typically given medications like tramadol and morphine. People in the first category, known as the red group, have life-threatening conditions and are unable to walk. Someone from the organization visits them every two weeks. Patients in the second category are known as blue patients. They are in more stable condition, but unable to move independently. They get a visit once a month.
“We find our patients in physical pain, and we give them treatment and care while striving to also care for their psychological, social, and spiritual needs”
Ephrem Abathun, Hospice Ethiopia’s executive director
Patients who can walk are in the green category. They are monitored through phone calls and text messages and can renew their medications at the organization’s clinic in Addis Ababa’s Kotebe Kara Yeka Subcity.
“Our clinic is where cancer and HIV patients who can walk come, for their physical needs,” Abathun said.
Filagot Tadele, a nurse at Hospice Ethiopia, said that the schedule is not set in stone. “If they need us weekly, or twice a week, according to the critical level of their conditions, we look for a way to go back to their houses to visit them,” she said.
Every Thursday, patients with psychological disorders come to a day therapy program to eat lunch, listen to music together, and tell their stories.
“Most times, the patients are abandoned by their families due to their conditions, and this results in emotional problems such as sadness and loneliness. The therapy program provides an environment where they have social interaction, as well as access to doctors and nurses,” Abathun said. There are currently 15 patients participating in the therapy program.
In Ethiopia, palliative care is neither widely known nor accepted, even by administrators of health care facilities, so Hospice Ethiopia works to raise awareness of comprehensive palliative care through media and social media campaigns. The organization collaborates closely with the country’s ministry of health, as well as many hospitals, to train doctors and nurses on how to care for patients with incurable diseases.
According to Abathun, “Once a person is diagnosed with an incurable disease, the doctors are usually quick to tell the family members to take such a patient home to let them die.”
The organization hopes to help change the narrative, so that more people can enjoy quality of life, even while suffering from terminal illnesses.
Hospice Ethiopia’s staff say that the scarcity of drugs such as morphine in Ethiopia impacts their organization’s ability to help people. They say they would like to be able to produce morphine, as does Hospice Uganda – but this is prohibited in Ethiopia. Fewer than 2% of the drugs consumed in Africa are produced on the continent.
Palliative care works
Tamiru has been receiving pain management in the form of drugs since he was admitted to the hospice program. His family gets food from the group, as well. In addition to the medicines, he is visited every two weeks and given emotional and psychological care. The organization’s care has helped, and Tamiru says he is doing better. He can sleep better now, and more easily get through the days.
“I am a witness to the benefit of palliative care. It is important to relieve suffering. It is required by patients like me,” Tamiru said.
Unfortunately, because of Africa’s poor healthcare system, the majority of people like Tamiru with devastating diseases do not receive medical treatment to ease their suffering.
