EMMS International has supported palliative care work in Malawi for several years. Jane Bates has written a guest blog post for this year’s Universal Health Coverage day which is celebrated on Sunday 12th December 2021.
Jane is Senior Lecturer and Head of the Department of Family Medicine, at Kamuzu University of Health Sciences (formerly College of Medicine) in Blantyre, Malawi. Jane also authored Inspiring Hope, a palliative care guide for churches caring for patients and families, it was published in partnership with EMMS International in 2013.
“Universal health coverage means that all people have access to the health services they need, when and where they need them, without financial hardship. It includes the full range of essential health services, from health promotion to prevention, treatment, rehabilitation, and palliative care.” - WHO
I have helped to establish adult services (Tiyanjane Clinic) and support paediatric services (Umodzi Clinic) through the Palliative Care Support Trust at Queen Elizabeth Central Hospital since 2003. Services have been developed and delivered in partnership with EMMS International over several years, most recently through the METHOD and Chifundo projects which were largely funded by the UK government.
In Malawi, as in many low- and middle-income countries, gaps in primary care leave many households stranded beyond diagnosis without adequate ongoing care. This leaves the serious health-related suffering of those living with life-limiting illnesses such as cancer as one of the most neglected areas in global health today. Palliative care, included within Universal Health Coverage, aims to improve quality of life and reduce serious health-related suffering. Over 80% of the estimated 24 million adults and children in need of palliative care currently live in low- and middle-income countries.
Take, for example, Millika*. Millika is 37 years old. She lives in Blantyre in Malawi with her two school-aged children and her niece. She did piece work for a local scrap merchant, but her work was disturbed when her leg started swelling. She kept working for as long as she could, but eventually, after several trips to the hospital, Millika was told she had advanced cancer. This was not the news she was expecting. Soon after she received her diagnosis, her husband left her. More visits to hospital meant more money needed for transport and to buy some of the drugs the doctors ordered. Millka couldn’t find this money and instead stayed at home, no longer able to work or walk because of her painful, swollen leg.
Working with patients and families such as Millika for the last 19 years led to my PhD research, through which I have been able to conduct and publish robust research to improve an understanding of and provide evidence for the cost-effectiveness of palliative care in Malawi. A newly developed cost survey was used to gather cost and quality of life outcomes from households affected by advanced cancer. I was particularly focusing on whether the provision of palliative care can protect families from some of the out-of-pocket expenditure on healthcare which they can incur.
In my research, I found that over 60% of households in Blantyre, Malawi, with a patient with a life-limiting diagnosis, faced catastrophic costs within six months after their diagnosis. However, this was reduced where they had received palliative care, as was the need to sell assets to raise money to pay for healthcare. Patients and family carers told the story of their illness through a participatory photographic method called Photovoice. The research assessed the wellbeing of patients, which was understood as having courage, improving function and being included in the community. Palliative care was valued where medication reduced pain – as Millika said, ‘I now work properly on my business and all my household chores after receiving medication’. Through hands-on care and counselling, palliative care reduced both poverty and discrimination. Access to palliative care was limited and larger studies in Malawi and other settings are needed in future.
*not her real name (photo used with permission)
EMMS International and its partners remain committed to promoting universal health coverage, including palliative care – care for all, always. Your continued support makes that a reality.