Welcome to our Palliative Care Facts section that aims to give you the crucial knowledge about palliative care, globally, in Africa and in Uganda.
The World Health Organization definition of palliative care is that it is “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”, see the WHO definition here.
World Health Organization and the Worldwide Palliative Care Alliance (WPCA) published in January 2014 the first ever “Global atlas of palliative care at the end of life.” This document serves as map to understand the yet unmet needs of palliative care across the world. On page 41 this book gives the 4 levels of palliative care and colors the highest integration in green. Most of the countries in green are in North America, Europe, Australia and a few in SE Asia. The only one in green in Africa is Uganda. This document can be accessed here.
The 2014 World Health Assembly passed Resolution 67.19, “Strengthening of palliative care as a component of comprehensive care throughout the life course” which can be found here. This act has made palliative care a global health need to be addressed by governments around the world. This was an exciting moment for the palliative care community across the globe. HAU and its partners, local and international are ready to continue the work to ensure this resolution is implemented and the great unmet palliative care needs are addressed.
Palliative care first came to African in 1979, in Zimbabwe. A young lady had died in severe pain of cancer. Her parents later visited St Christopher’s in London and saw that it is possible to control pain and symptoms and bring peace to patients with cancer and other diseases. They returned to Zimbabwe and commenced the first Hospice in Africa. Zimbabwe in 1979 could afford to buy oral morphine and they commenced a home care service. www.islandhospice.org
The second country to commence palliative care was South Africa in 1980. This commenced in St Luke’s Hospice in Capetown, founded through Dr Chris Dare, who had worked with Dame Cicely, the founder of the modern Hospice movement and was greatly inspired by her. www.stlukes.co.za
There was a ten year gap, during which several African health workers did visit St Christopher’s and established Hospices aboard, but nothing could be commenced because of the inability of the economies to meet the costs of a model based on the western models.
In 1990, Ruth Woodridge commenced Nairobi Hospice to meet the needs of the intense suffering she saw among patients sent home from health facilities because “there was nothing more to be done”. She established a trust to raise money to commence an African service for all in Kenya. However the strongest analgesic available at that time was codeine and this was so expensive that many could not afford it. Dr Anne Merriman, was invited to apply to be their first Medical Director while coming to the end of her contract in Singapore with the national University. Anne had commenced a home care service for Singapore and had with the local pharmacists come up with a formula for oral morphine that was simple to make and extremely cheap and affordable for Africa. This simple solution was to change the future of palliative care in Africa. Holistic care cannot be given to patient or family when all are so distressed because of severe pain. Now it was possible with such a solution available and training for health professionals, for palliative care to commence in earnest in Nairobi. www.nairobihospice.or.ke
It was the suffering witnessed in Nairobi that brought about the realisation to Anne that this suffering was throughout Africa. Having worked for 10 years in Nigeria in the ‘60s and early ‘70’s she reflected on how often she too had sent patient home from hospital because “there was nothing more to be done”. African needed a model hospice which could spread the good news that palliative care is now possible. Hospice Africa Uganda was founded in 1993, after recruiting support in UK and other countries.
From 1993-2015 there are 35 of the 54 countries aware of palliative care, due to HAU (1993) and APCA (2003) and 20 of these have oral affordable morphine and are practising palliative care. Sadly, this is often confined to the capital of a country and there are still millions suffering as we speak. Less than 33% of countries have a radiotherapy machine and less than 5% of cancer patients reach curative treatment such as surgery, chemo or radio therapy. WHO stated in 1986 that the only answer that is affordable for the suffering in the developed world is palliative care. This is because the curative treatments will not be available for generations to come. It is now nearly 30 years later and many are still suffering. It has taken so long for it to come to Africa!
The Ugandan initiatives in Africa
Availability of oral morphine in Africa. Anglophone vs. Francophone countries
Hospice Africa Uganda has started palliative care in 1993 under the leadership of Pr. Dr Anne Merriman. Because of her restless efforts in advocacy and training and the essential support of excellent health experts and government officials, palliative care took off the ground. HAU is established as a model of home based palliative care, while the Mulago Palliative Care Unit serves as a Hospital based palliative care model. Home based palliative care is especially important in Africa where health care is not accessible for millions of patients relying on traditional medicine that is unable to treat life-threatening diseases such as cancer or HIV/AIDS.
Palliative care is reaching more and more districts every year (see map). The educational arm of HAU, the Institute of Hospice and Palliative Care is offering long courses for dedicated professionals from the whole country and short courses in district in partnership with the Palliative Care Association of Uganda. However if the Model is well established, funding is still restricting the complete expansion of palliative care to the country. In fact only 10% of the patients in need can access palliative care in Uganda. The Ugandan palliative care community is confident in the future however; palliative care is more and more recognised as a human right and an “urgent humanitarian responsibility” (WHO, 2002).
To know more about palliative care in Uganda please visit the Palliative Care Association of Uganda’s website here.