How A Catholic Nun In Uganda Created A Global Program For The Terminally Ill

 

Dr. Anne Merimann has worked for decades pioneering palliative care in 37 countries. Photo via Facebook.

KAMPALA, Uganda — Dr. Anne Merriman, 87, can recall a time in Uganda when people were “dying all over the place.” It was 1993. The U.K.-born former nun and pioneer of African palliative care, along with a Kenyan nurse, had come here after the Ugandan government accepted their offer of help to control the severe pain that accompanied HIV deaths.

With no oncology screening or treatment available, people were dying and suffering from cancer, they had learned according to research. But there was only paracetamol, or codeine, too expensive for most, for pain relief.

When the pair arrived, they were confronted with another unexpected horror.

“Uganda was in the middle of an AIDS epidemic, which doubled the incidence of cancer,” said Merriman, speaking from her home near Lake Victoria on the outskirts of the country’s capital, Kampala. “People were just lying at home and dying in agony, their families in agony too.”

But Merriman — who was talking to me after she recently had her fifth heart attack, in Kampala, and had already worked in the U.K., Ireland, Nigeria, Malaysia, Singapore and Kenya — was met with a familiar challenge.

“Some of the doctors said, ‘We don’t practice euthanasia here,’” she said, describing the attitudes in the east African country where less than 1% of residents is atheist. “They thought we were going to kill people with morphine.” 

The carnage, however, was overwhelming.

“The then-Ugandan Minister of Health, James Makumbi, said to me, ‘My people are suffering. Come in with your morphine and control their pain.’”

For someone who arrived with only three months’ funding, Merriman managed to set up a successful continent-wide palliative care program now present in 37 countries. Over nearly three decades, it has let thousands of patients die a dignified death at home and provided palliative care training to nurses and others.

Growing up during WWII

Born in 1935, Merriman grew up praying with sirens wailing and air raid shelters as a normal part of life, amid World War II in Liverpool, England. “My mother took me to church and talked to us about God,” she said. “I had a close relationship with Jesus and talked to him as a friend.” Her Irish mother motivated her through a religious journal from Africa that she received. “I prayed to go with my inspiring mother (and) when I saw a picture in this magazine told her, ‘I am going to Africa to look after these children when I grow up’.”

When she was just 12, her younger brother Bernard, whom she was particularly close to, and who had aspired to be a priest, died suddenly from a brain tumor. When her mother’s cousin, a priest, visited the family, he brought a photo of Fabiola, a disciple circa 347-420, who co-founded the first hospice, in Porto. He’d been a patient in an Irish hospital with the Medical Missionaries of Mary. “My cousin said, ‘The nuns there can show their hair, can show their ankles, and they also ride bicycles,” Merriman said.

“My decision was made then at 13. I would join the MMMs if they would have me.

Her ambitions and faith were bolstered when a short time later she saw a film about the MMMs in Africa.

Merriman graduated from University College Dublin in 1963 and after completing the first part of medical training in the International Missionary Training Hospital in Drogheda, on Ireland’s east coast, worked with the MMMs in Nigeria.

“It was a culture shock,” said Merriman about arriving in the West African nation in 1964. “Where I was working, when a girl was born, a man started paying a bride price for her and would take her when she had her first period.”

But St. Luke’s Hospital in Anua, Nigeria’s southeast, where she honed her expertise in surgery, obstetrics and pediatrics, was “the best place” to learn, Merriman said.

Work in Nigeria, Ireland and the U.K. in child health and tropical medicine filled up the first decade of her professional life. She liked the “spiritual” side of MMM life. But over time and as she had placements in other countries, “the words of John XXIII resonated in me everyday,” she said, as she realized that “God gave us brains to make decisions, and obedience to others was not always the right way to go.”

Merriman felt like she was sometimes being “inhibited” from fulfilling her goals. She eventually made the difficult decision to leave the order. “Keeping my relationship with God and the spirituality I had embraced as an MMM helped me to go through this difficult time, returning to a sick mother, and seeking a job in my birth place,” she said. “I kept my relationship with Christ, as I saw him in my elderly patients.”

Teaching palliative care

In 1979, Merriman took over a failed geriatric unit covering Whiston Hospital and St. Helen’s Hospital in Merseyside, Liverpool. Nearby was St. Helen’s, a center for acute and long-stay patients.

“It was terrible because health professionals did not accept death,” said Merriman. “They were giving patients strong antibiotics, trying to keep them alive for as long as they could, and these would make their symptoms worse.” It was seeing the need for palliative care that sparked her desire to teach it.

But she climbed the ladder of academic life, becoming a senior lecturer in the U.K. and an associate professor in both Malaysia and Singapore. In 1984, she introduced palliative care in Singapore, with the help of “so many willing nurses.”

In 1989, she met a board member of Nairobi Hospice, then just starting up. She eventually became its first medical director. “I saw terrible cases in Nairobi,” said Merriman.

She was some time later invited by Dame Cicely Saunders to write an article for the Christian journal Contact about her work in Nairobi. Saunders in 1967 had founded the St. Christophers’ Hospice and the modern hospice movement. The story sparked mail from all across Africa. “Seven countries were writing, asking me to help them,” said Merriman. “I realized that so much of the continent needed help.”

Through research, she and her team identified four countries, including Uganda, from where they could set up an African palliative care model. A war had recently ended in Uganda. The current president Yoweri Museveni had at the time been in power for only about eight years. “He was a darling of the donors, corruption was (low), and the health minister was so caring,” Merriman said. (Museveni has since been criticized by western governments and NGOs for becoming more authoritarian and illiberal.)

They arrived in Kampala in February 1993. Initially, Franciscan Missionaries of Mary from Dundalk in Ireland, working at the city’s Nsambya hospital, accommodated them. It later loaned them a tiny house, where Merriman and Fazal, a nurse from Kenya, saw patients on a living room couch.

“But we made people feel they were welcomed at our home, giving them a cup of tea when they arrived,” said Merriman.

“We were trying to follow what Hippocrates (traditionally called the “father of medicine”) said 400 years before Christ: ‘It is more important to know the person who has the disease than to know the disease the person has.’”

She pointed out that Jesus’ life was dedicated to the downtrodden and sick. “This is what palliative care is and does — it’s called compassion,” she said. “But all the founders of religions were moved by compassion.”

Hospice Africa Uganda, or “Hospice” as it’s affectionately known today, and “the Merriman model” were officially launched in September 1993.

“We’re trying to get rid of bureaucracy and bring in an ethos where we treat everybody with respect,” she said.

Today Hospice Africa Uganda has three sites, one in the capital, Kampala, where they now make their oral morphine for the entire country — free to all prescribed by a recognized prescriber. There are also branches in Hoima, the northwest of the country, and in Mbarara, in the southwest. About 92 staff members treat patients at home and in clinics at the hospice sites. They manage pain with a simple formula of oral morphine. They visit those who are too ill to attend clinics at home. People are cared for regardless of whether they can contribute money or not. Hospice’s Institute of Hospice and Palliative Care in Africa also trains medics up to master level, and their degrees are conferred by Makerere University. 

Merriman explained that “spirituality is very prominent when someone is dying.”

“In Uganda, I have never met anyone who does not believe in God, but they are from many different religions, mainly Christian and now ‘born agains,’” she said. “Yet when people step outside a church, they can murder or steal, and it is OK because they stayed up all night praying.” She said that this is particularly “happening in our Christian churches today.”

“Our Muslims are more accepting of following Allah and the life of Muhammad in their spirituality,” said Merriman.

However, it’s not been common for her to talk to patients about their lives coming to an end, or her beliefs. “(It’s) only (been) occasionally if they are going through a trial which mirrors one I have gone through,” said Merriman. The other instance will be if patients specifically broach such matters with her. She says she’s often been asked, “Why do you do this work?”

“I then tell them that it is the work of God and of Christ,’” said Merriman.

But she’s never considered her work a form of chaplaincy. “It is (a) professional medical specialty of palliative care, which includes care for the spirit,” she said. “We have course(s) for spiritual advisors and clergy on spirituality, for those helping others at the end of life.” This subject is also discussed at conferences that Hospice attends.

Hospice’s African offshoot now supports palliative care projects in Tanzania, Nigeria, Cameroon, Sierra Leone, Malawi, Ethiopia, Zambia, Sudan and Rwanda, among others.

In 2014, when Merriman was nominated for a Nobel Peace Prize, she said, “(I had to) pick myself up off the floor.”  She has a string of other honors to her name, including an MBE (Member of British Empire), three honorary degrees and an African Palliative Care Association lifetime award.

Dr. Eddie Mwebesa became involved in Hospice after noticing the difference in patients who had been administered morphine compared to the ones who had not while working at Mulago Hospital as a Kampala Makerere University student. He took over from Merriman as head of international programs.

“Amazing doesn’t even begin to describe her,” Mwebesa said of Merriman. “By the time I met her, she was by Ugandan standards old — in her 60s, retirement age.” Merriman was an “excellent clinician, wonderful teacher and inspires people to want to be involved in palliative care,” he said.

Joan Kelly, an Irish expat who worked in administration and fundraising for Hospice, admits that things were not always smooth sailing at Hospice.

“She’d give someone the Hospice vehicle, and then she’d say, ‘I saw it down at the supermarket,’” Kelly said. “But this was out of concern for the patients.” Kelly said that Merriman “practices her religion every day her life — her religion is her life.” But “she’s never shoved it in everybody’s face.”

Treating patients like guests

Today, Merriman relies on a walker to get by and rarely goes into the Hospice building. But she’s writing “about six books,” including “The Merriman Model.” One practice that prevents her from burning out is called “centering prayer,” which she practiced as a child but only recognized it when Bishop Dowling, a redemptorist from South Africa, visited Uganda. “He is and was a living saint who showed us and many others how we so need Christ in our lives when assisting those at (the end) of life,” said Merriman.

On her own mortality, she said that her heart attacks haven’t made her question this. She isn’t sure if there’s an afterlife and hasn’t been to church in Uganda for months now. “I can't stand the length,” she said. She attends an online weekly Catholic service via Liverpool.

Today, a quilt composed of different patches decorates a wall in her home with “Ubuntu” written across it. The quilt was made by friends of Nancy Hinds, the founder of Hinds Hospice in Fresno, California. Merriman worked with her late husband, Godfrey, in Nigeria. When Hinds visited Uganda and heard Merriman speak about the philosophy, she and some others made the quilt and sent it to Merriman.

It was through her study of religions in Africa that Merriman heard about Ubuntu, most famously espoused by the late Archbishop Desmond Tutu. The term is Bantu and translates into “I am because you are you.”

“It demonstrates hospitality, which is the overriding spirit of Hospice, where all who enter our gates are our guests,” said Merriman.

“Ubuntu (means) offering hospitality, and before I discovered it, we made hospitality one of the pillars of our Hospice ethos,” she said. Merriman explains that “a patient once said that coming to us wasn’t like going to a hospital; it was like going home as ‘everybody welcomed me.’ Ubuntu means treating our patients as our guests, whole persons, and not as their illness,” she said.

 Amy Fallon is an independent journalist based in Kampala, Uganda.