ehospice is excited to be serialising, with permission, the remarkable stories from this book published by Hospice Africa Uganda. We begin with the background to the pulling together of these stories…
“The year 2023 marks 30 years for Hospice Africa Uganda and birthed the idea of writing a collection of 30 stories.
Teams at all our three sites at Hospice Kampala, Mobile Hospice Mbarara and Little Hospice Hoima embarked on writing something for this great milestone. They also gathered stories from patients.
The result is a captivating and moving book, full of life and all of the powerful emotions that come with extending love during the challenges facing patients with serious and life-limiting medical conditions and their families.
It tells of the joys that come with never giving up on patients whatever the prognosis of the disease they have.
It tells of the passion in teaching others how to care, showing compassion, and demonstrating excellent medical skills and providing important emotional support at the same time.
It tells of hearts that seek to know patients, beyond theories that seek to define patients’ illnesses. This is a powerful book of compassion.
As you read this book, may you be moved to demonstrate more than the expertise of your profession in life but to also extend love and care. Caring is still so vital in the world today as it was when Jesus told the parable of the Good Samaritan. Let us care for one another till the very end. Let us make it possible for those caring for the terminally ill to play their part by supporting their work.
Thank you for choosing to read this book today.
Dr Agasha Doreen Birungi, Recent Chief Executive Director, Hospice Africa Uganda
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** 30 Years 30 Stories can be purchased on Amazon.**
Copyright (c) 2023 Hospice Africa Uganda Publications. Republished on ehospice with permission.
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Preface and Acknowledgements
The community needs the dying to make it think of eternal issues and to make it listen and give to others.
Cicely Saunders[1]
The idea for this book came from Dr Eddie Mwebesa, Clinical and International Programmes Director at Hospice Africa Uganda. Dr Eddie also supported the individual writers throughout this exercise of love and caring.
The 30 stories herein represent 30 years of inspiring, challenging, and sometimes heartbreaking work on behalf of Ugandans with terminally ill cancers and other life-limiting, painful medical conditions.
These stories bring to life the vision that has undergirded Hospice Africa Uganda (HAU) since Dr Anne Merriman founded Hospice Africa in 1992 as the model for Hospice Africa Uganda in 1993: – ‘Palliative care for all in need in Africa’.
To realise this vision, the HAU mission brings peace to the suffering in Africa through providing and facilitating affordable and accessible palliative care in Uganda and other African countries.
We wish to thank the patients who generously allowed their stories – and in many cases photos of themselves – to be shared, along with the Hospice Africa Uganda team members who did the hard work of writing down their recollections of some wrenching experiences, along with their journeys, while being the incredible caregivers they are.
In a couple of instances, family members of patients wrote down their own memories of the difficult experience of having a family member with advanced cancer; they explained how much it meant to them, to have HAU clinicians treat their suffering family member and offer support to distraught relatives at a critical time.
Most of all, these stories are a tribute to the incredible dedication, skills, and determination of Dr Anne Merriman, HAU’s founder. She arrived in Uganda three decades ago, driven by her faith and her dream of creating an African model of palliative care.
Hospice Africa Uganda and the thousands of lives its work has touched are a direct result of Dr Anne’s vision, commitment, hard work, and passion for relieving pain in people suffering throughout Uganda and Africa.
When Dr Eddie with Dr Doreen Agasha (CED) initially asked the palliative care teams of Hospice Africa Uganda to write their stories, they did not realise how much we were all to learn from them.
These inspiring stories are written by both dedicated palliative care Ugandan clinicians (mainly our nurses) and by relatives of patients they cared for.
This book includes descriptions of actual patient cases along with a number of brief, yet telling stories, from Hospice Africa Uganda team members, including their personal history with Hospice Africa Uganda.
Each one is moving in its own way, as they invite you into the homes to see the needs, and how with open hearts and hospitality, we bring comfort and holistic care to patients and families during this special time before the end of life. African palliative care serves them mainly in their own homes, where most Africans wish to be with their family and loved ones, at this special time of life.[2]
This book brings you into the homes of the African patients we visit, so different from the developed world.
It shows African palliative care at its best, which can be delivered affordably in low- and middle-income countries (LMICs), in spite of different cultural needs and low country and family economies.
The difference we make, demands our own compassion, medical, spiritual and social/emotional skills.
Our interactions with patients and their families, and even their neighbours, have enabled us to translate Dame Cicely Saunders vision into true African palliative care.
About Hospice Africa Uganda and Our Palliative Care Work
Hospice Africa Uganda was founded in 1993 primarily to provide patients with life-threatening cancers relief from pain and comfort in their own homes and to spread relief from suffering throughout Africa.
Our vision of ‘Palliative care for all in need in Africa’ still stands but it is moving too slowly in most countries.
Even in Uganda, our model country in palliative care, we are only reaching 14% of those in need with 80% of our Districts having at least one palliative care nurse.
We have trained over 10,000 carers at all levels in Africa, yet it is still regarded in the health fields as unnecessary when set beside curative services.
Caring is not seen as a priority by the established health services. Success is measured as maintaining life, not bringing peace to those at the end of life.
Hopefully, readers of this book will realise that we can change this approach and the suffering in the homes through palliative care, but it must be suitable to the place where it is practised.
Our home care has expanded to clinics at our Hospice sites, outreaches to provide patient care in hospitals, to bring patient care and teach health workers, community volunteers and relatives the elements of hands-on palliative care.
HAU also offers roadside clinics, where we see patients, often outside or in the Hospice car, or under a mango or suitably shady tree. Patients come to the location at specified times to meet a team of nurses from HAU, outside the usual catchment area. They consult, are examined and given treatment. This approach is a godsend for patients who can’t make the long trip to the clinic at Hospice; and the palliative care team can see a number of patients at one place without having to make separate visits to often hard to reach locations.
Our dedicated teams at the three sites have shown remarkable commitment to this work over the years. You will read their own stories from their lives in palliative care in this volume.
The HAU teams are dedicated to our ethos, which has grown from the Hospice spirit which was there from the start in 1993. We have been blessed with dedicated team members from then until now; they still amaze me as they go the extra mile, often teaching me something new that brings us all closer to the patients we love.
As a physician, I have worked in many specialities on three continents, but the one that brings me the greatest return is palliative care.
It is not highly paid; indeed, our team members have been on 50 per cent salary cuts in recent years. Funding is much reduced due to Covid taking over funding from donors and the health care system being focused on Covid and neglecting other causes of dying.
Our patients have so many needs and show so much gratitude. Most have never had a visit from a medical care team before. To see a loved one able to communicate after the team brought relief from terrible pain brings joy and peace to the whole family.
Our teams are the Good Samaritans of their areas, bringing specialized treatment and loving care to all they meet.
This is God’s work, and we must never forget this. The spirituality of our patients and of all in our teams is kept in mind at our daily prayer at Hospice sites and discussed with every patient. Uganda is so different to Western countries. I have yet to meet a Ugandan at the end of life who does not believe in God and most of them seek for their health worker to discuss existential issues with them.
May those who read this book be moved by the need for us to bring peace to those suffering in every situation but particularly in Africa and other LMICs, where typically fewer than 50 per cent reach any form of health care and 95 per cent of cancer sufferers do not receive curative treatment.
We ask for your prayers, your financial support, and your volunteering.
Many volunteers come and return home changed people. Many have said to us in wonder ‘we cannot do in the UK, US or other richer countries, what you have achieved here’. Yes we need financial support but most of all we need love and compassion, and this comes from the heart.
Anne Merriman, Annie Lezak
[1] Shirley du Boulay and Marianne Rankin, Cicely Saunders: The Founder of the Modern Hospice Movement, p. 109.
[2] E. Kikule.
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