Building leadership in Africa to promote equity in palliative care.

The 18th World Congress of the European Association for Palliative Care (EAPC) is nearly here! Today, we are pleased to welcome Dr Zipporah Ali to give us an exclusive preview into her EAPC Award plenary lecture. The burden of disease due to injuries and noncommunicable diseases has increased in Africa by 28% in the last three decades and Dr Ali explains why urgent investment in palliative care is essential.  

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Photo credit: Albrecht Fietz, Pixabay

I remember a 23-year-old patient with osteogenic sarcoma who challenged me in many ways while under the hospice care. Had I met John (not his real name) earlier in my career life, before I started working in a hospice, I would have classified him as ‘that difficult patient’. John had undergone an amputation and found it very difficult to accept this (naturally, who would aged 23?). He had not been told his diagnosis or prognosis. He had big dreams to become a successful businessman. John’s journey during his illness was not easy; he had difficult problems (rather than being a difficult patient) and needed extensive support from my colleagues and me. 

Why am I sharing John’s story? John is just one of the many patients who face many challenges in their journey with a life threatening illness. Africa faces a double burden of infections and chronic diseases. The burden of disease due to injuries and noncommunicable diseases (which are conditions not caused by acute infection), measured by the proportion of total disability-adjusted life-years (DALYs) has increased from 37.8% in 1990 to 66.0% in 2019 in the African region (1). People living in most countries in Africa are experiencing an increase in numbers of years spent in poor health, even though both life expectancy at birth and health life expectancy has improved in the same period.

Clearly, the need for health services that focus on quality of life is undeniably huge. Palliative care is one of those very key services that Africa must invest in. Most patients with malignancies are either diagnosed later or are not able to access appropriate lifesaving or life prolonging treatments, and so most will live and die in pain and suffering.

Undeniably, there has been some significant improvement in palliative care provision in Africa over the last 20 years. Some countries have integrated palliative care in their health care systems, have national policies, strategies or guidelines, or have prioritised palliative care. However, there remains a huge gap in palliative care services in most African countries. A few countries have a few hospices, but these cannot meet the demand. African health systems urgently need to invest in the education of health care workers, the education of the public and of policy makers, research in palliative care, ensure the availability of services including access to opioids for pain management, and human resources to make palliative care accessible and available for all that need it. Countries implementing Universal Health Coverage (UHC) should ensure that palliative care, including end of life care, is included in their UHC packages. Currently, most UHC packages do not include palliative care outpatient services or home care. Most palliative care patients are in their homes, therefore, care should be extended right into the patient’s home and this care should be covered by UHC package.

Nurses in Africa are the main providers of palliative care, yet they are underpaid and they are not fully appreciated by our systems. They need to be well compensated, recognised as specialists providing this important service and given opportunities for career development. We must invest in our nurses and others who have the passion to care for those with a life-threatening illness.

We need to empower and invest in effective leaders in palliative care who can provide the direction and leadership that will strengthen palliative care services in their countries. A country with a successful integrated palliative care service is a country that truly cares about its people.

Join Dr. Zipporah Ali at #EAPC2023. On Friday, June 16, Zipporah will give the EAPC Award plenary lecture ‘Building Leadership in Africa to Promote Equity in Palliative Care’.

Find out more about the EAPC’s 18th World Congress here.

Reference

1 World Health Organization Global health estimates: Leading causes of DALYs.

Links and resources

• Read more about the upcoming #EAPC2023 in the blog here.
• Learn more about the work of the African Palliative Care Association (APCA).

About the author

Dr Zipporah Ali has recently retired from the position of Executive Director of Kenya Hospices and Palliative Care Association (KEHPCA), a position she held for 15 years. She is the current chair of the NCD Alliance Kenya and the Vice President of AORTIC East Africa. She serves on several national and international boards. Dr. Ali has been and continues to be involved in advocacy and creating awareness on pain relief and palliative care in Kenya for children and adults as well as Universal Health Coverage. Twitter: @zippyali.

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