14 August 2023

Bringing Dignity and Love to Dying in Uganda

The Katanga slum in Kampala is both heartbreaking and heartwarming. The level of poverty is in many ways beyond belief, and yet the kindness and neighbourliness I saw there would put many of us in wealthy countries to shame. I was there accompanying Roselight, a nurse from Hospice Africa Uganda (HAU), to visit Safina, a 72-year-old grandmother, with throat cancer. The Katanga slum is home to some 20,000 people, and finding a patient’s home amongst the narrow maze of alleyways, many with open sewers running through them, is challenging even for Roselight, who has been visiting the slum for years. Lydia, Safina’s daughter, led us to the home she and her mother share with her sister and their 5 children.

Safina, on the floor, with from left, HAU nurse, Roselight, Safina’s daughter Lydia, and Lydia’s son Champion.

Safina sat on the earthen floor of her home, which was about the size of two parking spaces, as Roselight checked her blood pressure and temperature. Holding her fingers to her throat, where she has had a tracheotomy, so that she could speak, Safina told us she was feeling a little better, and that her pain was greatly eased by the oral liquid morphine and other medicines that Roselight brings each month.

This visit was about more than easing the pain of Safina’s terminal illness. There was a long conversation about how the family was getting on, and their financial situation. Safina told us that her and her daughter’s main source of income was collecting banana skins in the slum, which are then sold for animal feed. The income is a pittance and not enough to keep the family fed, so Hospice Africa Uganda help in this as well.

The money to support Safina and her family is funded from The Hospice Africa Uganda Comfort Fund. It’s a discretionary fund, administered by HAU social workers and nurses and overseen by accountants, that allows for support to be given outside the range of normal medical offerings. Over the week I was with Hospice Africa Uganda, I got to understand the importance of the comfort fund. It’s used to buy drugs patients need that are not generally available to the Hospice, to buy basic needs like food and other needs like the incontinence pants needed by about half of the patients. (Unbelievably, these are more expensive in Uganda than in Ireland.)

One morning I joined the monthly bereavement meeting, where the nurses and social workers, having lit a candle, talked about the patients who had died over the past month. It was a meeting full of love and compassion where the team mourned people who they had come to know and care for, and also reflected on any lessons learnt. In many cases they had been caring for them for years. One nurse was in tears telling the gathering of Ryan, a five-year-old boy who had Retinoblastoma, an eye cancer which had blinded him in one eye, and the joy he had derived at the very end of his short life from a toy car, bought with the comfort fund.

The visionary behind Hospice Africa Uganda, and its sister organisation The Institute of Hospice and Palliative Care in Africa, is the Liverpool-born Dr Anne Merriman. Now 88 years old, she is a tireless champion of her vision of “Palliative care reaching all in need in Africa”.  Her contribution to palliative care in Africa, and to Uganda in particular, has led to numerous awards, including a Nobel Peace Prize nomination, an MBE and the Presidential Distinguished Service Award for the Irish Abroad.

Jean with Dr Anne Merriman MBChB, MBE, MCommH, FRCPI, FRCP

While I had heard of Dr Anne (as everyone calls her), I only got to meet her, via Zoom, in 2022, when we were discussing the Irish Hospice Foundation funding scholarships for her Institute of Hospice and Palliative Care in Africa (more about this in the next blog). On a call finalizing this funding I discovered an extraordinary personal connection with Dr Anne. In 1956 18-year-old Anne joined the Medical Missionaries of Mary in Drogheda. One of her fellow novices was a 56-year-old woman, Dr Sybil Magan, who had for the previous 25 years been a GP in Granard, County Longford. Now widowed, Sybil had decided to join the MMM’s with a view to using her medical skills in Africa. This intrepid and courageous woman was my grandmother – my mother’s mother. So before I was born, Dr Anne and my grandmother were friends, a connection which both Dr Anne and I treasure. A note from Dr Anne in my bag after I returned home from Uganda read, “You are welcome back anytime, Dr Sybil’s granddaughter”.

My grandmother Sr Sybil in 1962 on holidays from Tanzania with her Daughter Margaret (Center) and from left grandchildren Claire, Frank, Paul and me (on Nellie’s lap)

The WHO says that Oral Liquid Morphine is the “Gold standard” in pain relief at end of life but when Dr Anne set up HAU 30 years ago there was no morphine available in Uganda. Dr Anne, a superb advocate and a highly practical woman persuaded the government to make the legislative changes required to allow specially trained Palliative Care nurses prescribe oral morphine for patients in Uganda. She then started to make oral liquid morphine herself using a simple formula and a bucket at a kitchen sink. Now thanks to American Cancer Society funding, HAU have a small but modern morphine compounding unit, and through a private-public partnership with the Government of Uganda oral morphine solutions are made free to all patients who need this essential pain medication. Dr Anne’s advocacy is not limited to Uganda, the model she developed is regarded as the best in Africa. When she started making oral liquid morphine thirty years ago only three African countries allowed access to it, now some thirty seven have legalised African countries allow access to oral liquid morphine for palliative care.

Watching Anne and her team at work is very humbling. They have three locations, Kampala, Mbarara and Hoima and see some 2,000 patients a year. Approximately 70% of patients have cancer, and HIV is prevalent too. They have no beds. The care is home-based, with clinics in these three locations, and fortnightly or monthly outreach clinics and home visits, like the one with Safina for patients too unwell or unable to travel. The small team is regularly joined by volunteer medical students – over this summer there have been medical students from UCD, TCD, UCC, Sheffield and Greece.

In the Katanga slum with student social worker Hasinat, and Lydia, daughter of patient Safinat. The case, which was heavy, carried morphine supplies, other medicines, medical equipment, as well as bags of sugar to give to patients and their families. (We discovered chatting with her later that Lydia has boxed for Uganda!) Photo Niall O’SullivanPhoto Niall O’Sullivan

For Dr Anne one of the biggest challenges is funding. HAU is funded almost entirely by donations. In an interview with UCD medical students Dr Anne said, “It takes £1M a year for us to cover 2,000 patients from our three sites and to support our Institute with gaps from lack of scholarships, to teach the leaders of the future. In the UK 10 patients in an in-patient hospice costs the same £1M.”

You can learn more about the work of Hospice Africa Uganda and support their work here. 

88% of the world’s population have no access to palliative care (source: Global Atlas of Palliative Care). This sobering fact led the board of the Irish Hospice Foundation (which I have the privilege to chair) to agree that, while we are primarily an Irish-focused organisation, our constitution commits “to fostering relationships with those working in the fields of hospice, palliative and end-of-life care” including the provision of funds and grants for the development of hospice, palliative and end-of-life and bereavement care. Africa has the highest per capita need, so we chose this as our area of focus. This July  while on a personal visit to Uganda I took the opportunity  to visit those projects being funded by IHF and write s series of three blogs about them.

You can read Blog 2 Supporting the Development of Future Leaders of African Palliative Care  here.

And Blog 3 Supporting Education & Training to Improve Dying, Death & Bereavement in Africa here.