I arrived in Uganda in 1993 having decided that this beautiful, caring yet sad country was the
best place from which Hospice Africa could develop its model of care. Sometimes
unexpected events lead to breakthroughs in ways which could not be imagined. For us it was
the remarkable way in which Uganda embraced palliative care because of the support of the
then Minister of Health, Dr James Makumbi (RIP).
Dr Makumbi saw the terrible suffering caused by cancer and HIV and he supported our plans
to try and do something to alleviate this. Until 2004 we were supported to make policies and
change the law so that we could train palliative care nurses to become prescribers of the
recommended medicine for severe pain, oral morphine.
Over the past 15 years however much of this initial support from the MOH and the
universities has lessened. There is also less training of doctors to care, not only for those who
reach hospital but also those living with their disease out in the community.
1n 1993 approximately 57% of people in Uganda did not see a health worker. Since then the
population has doubled and though health services have increased this has mainly been in
hospitals and health centres.
Palliative Care has an ethos which has not been adopted within medical circles. For us the
patient is the centre of all we do, from top level decisions to the care on the ground. Our key
word is “hospitality” to all who come to us.
To see and embrace the whole person when caring for a patient is still something new for
many health workers. They are used to curing the broken leg or the appendix or… often
without seeing the person whose leg or appendix it is. Success is measured in ‘cure’ without
considering the wider quality of life. Why is this?
We are all rotating around money. The faster the patient is in and out the more money for the
health system and the doctors. Treatment is being denied for lack of payment which increases
suffering. And this despite out taking the Hippocratic oath at graduation – “Do no harm.” –
yet this is exactly what we are doing in many LMIC’s and not only in Africa.
Our ethos calls us to know the patient; to know the patient’s needs, wants, values, joys,
expectations and these are often controlled by their economic state. We try as much as
possible to allow him/her, and the family, to have an improved quality of life. This is
important for all regardless of race, gender, education or status.
We have seen rich families prefer to keep their loved ones in hospital on invasive therapies
and interventions because of concerns that, otherwise, they will be considered not to have
done everything they could to prevent this death. This is a growing trend. Yet a study done in
Uganda by Dr Ekie Kikule in 2021, and later taken up by WHO in 5 African countries,
demonstrated that most people living with end of life care needs, and their carers, prefer to be
at home when there is palliative care available there for them.
We therefore call on all who care for those requiring palliative care to consider quality of life
and to embrace the importance of care being provided in appropriate locations where patients
wishes can be met.
So why is palliative care everybody’s business?
We are born with one certainty only.
It has already been shown that many, perhaps most, patients with a life-threatening illness
will live longer with palliative care. Yet most medical professionals have not grasped this.
Medical success is still measured by cure.
This attitude denies me and my loved ones the peace we all wish for ourselves and our
families at such difficult and precious times. Whether rich or poor, we need family and a
health worker who will treat us as the person we are, supporting us with pain and symptom
relief, thus providing the space within which we can, with our loved ones, plan for the future.
Kikule E, A good death in Uganda: survey of needs for palliative care for terminally ill people in urban areas: BMJ. 2003 Jul 26; 327(7408): 192–194