Every death matters, and we only have one chance to get it right.
As I listened to Dr Eve Namisango of the African Palliative Care Association (APCA) presenting her research on what is regarded as a good death in Africa (see box below), I was struck by how similar views of a good death in Africa are to ours in Ireland, as captured by Irish Hospice Foundation’s Charter on End of Life.
We are so similar – but the challenges we face at the end of life are markedly different. According to the WHO, only 14% of people at end of life who currently need palliative care receive it, and the Global Atlas of Palliative Care reports that Africa has the highest per capita need for palliative care, at least in part due to the prevalence of HIV. (Sub-Saharan Africa, which has 15% of the world’s population, accounts for 68% of all HIV cases globally.)
This is where APCA comes in. They are a Pan-African organisation with the mission of “ensuring palliative and comprehensive chronic care is understood and integrated into health systems at all levels to reduce pain and suffering across Africa”. Established in 2002, they have over the past twenty years supported more than 25 African countries to integrate palliative care into their national systems. Their vision and goals are very similar to those of Irish Hospice Foundation – but on a massively different scale. There are one-and-a-quarter billion people in Africa (more than 200 times Ireland’s population), and the current life average expectancy is 63 years as opposed to 82 years in Ireland.
Irish Hospice Foundation are funding two different, but linked, pilot projects for APCA. One is in the area of bereavement, an area on which little work has been done in Africa, and the other is in Palliative Care. The APCA approach in this has been similar to much of IHF’s work here in Ireland: identify a need, pilot a solution, measure its impact and aim to implement at scale.
The two projects I got to learn about on my trip to Uganda both started in late 2022. The plan is that the results will be presented to Africa’s Ministers of Health and participants at the International African Palliative Care Conference in August 2025, with a view to being rolled out across Africa.
The two pilot projects are being run outside Kampala, in Naggalama Hospital, 40 kms north of Uganda’s capital, and in Kitovu Mobile Hospital, 120 kms to the south. (Both coincidentally turn out to have been founded by Irish nuns!)
Pilot project 1: Integrating grief and bereavement services in palliative care
Programmes or initiatives to improve grief and bereavement are rare in Africa, so APCA want to champion the training of healthcare givers and community lay members to provide peer bereavement support. This pilot, which IHF is funding, builds on learnings from a study done in Zimbabwe, with funding from King’s College London. It is led by Dr Eve Namisango, APCA Programmes & Research Manager, and works with an Advisory Board.
Culture can have a significant impact on how people experience and express grief, so it is critical to make sure the process is culturally appropriate. A team of 30 health workers has been trained so that they can improve care and support to bereaved families in their respective facilities.
Using a train-the-trainer model, these healthcare workers and APCA, with the support of Zimbabwean Palliative Care and Bereavement Therapist Jenny Hunt, trained a total of 95 community lay counselors.
The training process included the lay counselors reflecting on their personal experiences of grief. Reading their reflections on grief in the research was emotional. Two themes stay with me:
The first, the mantra “Be strong” –
“I lost my mom when I was 16 years old. I was told not to cry by my stepmom. She would literally beat us whenever we would attempt to cry, claiming we had to be strong.”
“When I lost my child, I was told not to cry. I was told I would have another one.”
And the second was how often people in the training said that this was the first time they had been allowed to talk about their grief.
“I lost my son 18 years ago, and I never gave birth to another boy. I’m still in pain until now. This is the first time to talk about it.”
“I lost my wife while she was pregnant. The child survived, and I had to take care of the baby. I got support from my mom and my workmates in the military. I am so thankful to them, but this is the first time I have ever shared my story.”
Next steps in this project include:
- Ongoing mentorship for health professionals and community lay workers
- A structured course on grief and bereavement
- Raising awareness in communities
- Identifying and supporting bereaved families facing prolonged / complicated grief
- Integration of grief and bereavement services into routine palliative care at Kitovu
It is less than a year into a three-year programme, but early indications are very encouraging, and it has been attracting interest from other African countries. Following interest expressed by regional partners, two virtual trainings in grief and bereavement, based on the pilot training, were held. The first was attended by 80 healthcare professionals from 12 African countries and the second by 122 professionals from 15 African countries.
Pilot project 2: Improving the end-of-life experiences of patients with advanced disease
Managing Cancer and Living Meaningfully (CALM) Therapy helps patients to manage the challenges of living with cancer, reduce distress and promote psychological well-being. With the support of Professor Gary Rodin and the Global Institute of Psychosocial, Palliative and End-of-Life Care, this pilot programme is designed to teach and supervise healthcare professionals in the delivery of CALM therapy, and to measure its impact on patients.
This autumn, ten CALM therapists will be trained across three facilities (Rays of Hope Hospice in Jinja to the east of Kampala is going to join Kitovu Mobile Hospice and Naggalama Hospital for this pilot), and then these therapists will work with patients. The results of this training will all be closely monitored, and we look forward to hearing the outcome.
Spending a day with Dr Emmanuel Luyirika, APCA Executive Director, and his team, one can only be in awe of the impact he and his team are having on Palliative Care in Africa, given their size and resources. As so often during my week in Uganda, I was humbled by the scale of the challenge to be addressed, and the meagre resources available. But I was also deeply moved by the resourcefulness, commitment and determination to make a difference.
As I said at the beginning, every death matters, and we only have one chance to get it right – and APCA are certainly doing their best to make every death in Africa a ‘good death’.
You learn more about APCA and support their work here.
This is the final in a series of three blogs by Jean Callanan, Chair of Irish Hospice Foundation, about her experiences on her recent trip to Uganda and visit to Hospice Africa Uganda.
Cover photo: *From left to right. Front: Dr Eve Namisango, APCA Programmes & Research Manager; Jean Callanan, Chair Irish Hospice Foundation; Sr Jane Francis, Administrator, Nagalama Hospital. 2nd row: Wedzerai Chiyoka, APCA Communications Consultant; Mable Namuddu, APCA Finance Manager. 3rd row: Salim Ngira, APCA Finance & Admin Assistant; Iddi Matovu Kitovu Mobile, Programmes Manager; Dr Emmanuel Luyirika, APCA Executive Director. Back: Francis Kayondo, APCA ICT Consultant; Patricia Batanda, APCA HR & Admin Manager