We hope you enjoyed the EAPC 12th World Research Congress! All congress content is available online for delegates until 30th September 2022. There were many highlights from #EAPC2022 but we particularly enjoyed the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network, these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice. Today we are delighted to hear from the joint winner of the #EAPC2022 Early Research Awards – Dr. Jane Bates. Jane is Honorary Senior Lecturer at Kamuzu University of Health Sciences Family Medicine Department in Blantyre Malawi.
Thank you for being interviewed for the EAPC blog! Can you tell me what was your inspiration for a career in palliative care?
Arriving in Malawi in South Central Africa some years ago with an interest in holistic care for people living with HIV, I was pretty sure I didn’t want to work in palliative care. After all, why would I want to spend my time working in a speciality that was about death and dying when I wanted to help people to live with HIV? However, over time, through conversations with colleagues, attendance at an African Palliative Care Association conference and during further studies at the University of Cape Town, my perspective was reframed. I was able to gain an understanding of palliative care towards that described by Dame Cicely Saunders as ‘helping people to live until they die’.
From then on patients, their families and colleagues in Malawi have taught and inspired my clinical, teaching and research journey in palliative care. I observed the responses to long awaited pain relief as households adjusted to news of their diagnosis. By exploring person-centred communication across cultural and language divides and with improving access to immediate release morphine, I realised that far from being a ‘no-hope’ speciality, palliative care can support significant change in quality of life even in a context where many diagnostic and treatment avenues are unavailable.
Can you tell us briefly about the research that has led to your winning this award and some of the main findings?
In clinical palliative care practice in Malawi, we observed that access to adequate pain relief enables patients and/or their family caregivers to return to income generating activities. Timely provision of patient-centred information about illness delivered by health workers to households can avoid or reduce the need for crippling out-of-pocket expenditure on non-beneficial care whilst maintaining or improving quality of life. Research data exploring observed links between palliative care and poverty reduction are currently sparce and this was the focus of my research. The findings are aimed at supporting strategic advocacy for expanded access to palliative care, particularly in low- and middle-income countries (LMIC), where services are either very limited or entirely absent. My hope is that where policy makers and funders see evidence that palliative care supports household poverty reduction it will lead them to prioritise funding for palliative care, supporting the goals of Universal Health Coverage.
Can you tell us about some of the creative ways that you’ve used insights from your work?
At the EAPC conference in Madrid in 2017, I shared a photographic exhibition from a Photovoice project exploring patient and family understanding of wellbeing and the role of palliative care in Malawi. This year I’ve been working with an animator to produce a short film to summarise my research and findings, which I shared with the EAPC Congress.
What does winning the EAPC Early Research Award mean to you?
Most palliative care research comes from high income countries of the Global North. This award has given me the opportunity to present research from a very different setting which I hope will inform and broaden the perspectives of the EAPC community. More funding guided by local priorities and perspectives is desperately needed to explore this area across a range of countries and settings.
If you had a magic wand, what is your ‘ideal world’ for palliative care?
Adequate funding and supportive academic environments for palliative care research from low- and middle-income countries. I self-funded my research supported by a lot of goodwill, numerous grant proposals and a crowd-funding campaign! To support integrated models of palliative care in LMIC we have to talk to people outside of our clinical and research areas including patients, families, colleagues, researchers, health economists, policy makers and other key stakeholders. We still have a long way to go to ensure that palliative care is understood as contributing positively to global health.
Thank you for speaking with us today and letting us know more about your important research, and congratulations on your award.
Links and resources
- Jane’s animation linking palliative care and global household poverty reduction, showcasing her research can be found here.
- Jane Bates et al, ‘Household concepts of wellbeing and the contribution of palliative care in the context of advanced cancer: A Photovoice study from Blantyre, Malawi’.
- Find out more about Jane’s PhD thesis here.
- Read blogs from all the EAPC award winners here.
About the author
Jane Bates is Honorary Senior Lecturer at Kamuzu University of Health Sciences Family Medicine Department in Blantyre Malawi. She has lived in Blantyre Malawi for the past twenty years, developing clinical, teaching and research platforms in palliative care. After ten years in the clinical workplace at Queen Elizabeth Central Hospital she moved to the newly started Department of Family Medicine in 2013. She completed her mixed methods PhD at the Liverpool School of Tropical Medicine in 2021. Twitter @mjanebates. LinkedIn: Maya Jane Bates ORCID: 0000-0002-4459-837X.
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I love some of the writing in here: “Palliative care is understood as contributing positively to global health.” “Not a ‘no hope’ specialty”.
The way palliative care is viewed by the public and by professionals is hugely important. And there is a lot of work still to do to improve how we are seen.
We perhaps need some changes in our culture and approach to help fix things.