Households without access to appropriate care face the additional burden of increasing poverty when a family member is diagnosed with an advanced illness such as cancer. Despite integral to Universal Health Coverage, palliative care is one of the most neglected areas in global health today.
A team of researchers at LSTM, working with partners at the Kamuzu University of Health Sciences and Malawi Liverpool Wellcome Trust (MLW) Clinical Research Programme carried out a prospective cohort study to investigate the potential for palliative care to support household poverty reduction in the context of advanced cancer in Blantyre, Malawi. The research brought together a unique group of clinicians, researchers and policy makers, led by LSTM doctorate student, Dr Jane Bates.
Dr Bates explained: “For many in Malawi disease is diagnosed at a late stage, and, without adequate provision of palliative care at hospital and community level families often lack the support they need at and beyond this stage. This lack of support can mean that households are forced to spend money – on things like drugs, and transport to make multiple visits to hospitals and pharmacies as they struggle to find care for their loved ones. In the process, precious household assets such as bicycles and mobile phones maybe sold to raise money, leaving the household with even less, whilst children are pulled out of school to take care of their relatives.”
The research was conducted to examine how the catastrophic costs on healthcare following a diagnosis for advanced cancer in low and middle income countries might be mitigated by palliative care. 150 households (patients and their unpaid family caregivers) were recruited and followed to six months after diagnosis. Catastrophic costs affected 9 out of 19 ( 47%) households who had received palliative care compared to 48 out of 70 (69%) who did not. These findings indicate the potential for palliative care to support household poverty reduction, with larger studies needed to confirm the findings.
Early research from low- and middle-income countries has suggested that access to palliative care can support reductions in household poverty, as people receive timely and compassionate relief from pain and other symptoms along with information about their disease. This enables them to seek the care they need, avoiding unnecessary repeat visits to hospital and shopping around for care that will be of no benefit. Dr Bates continues: “As one of my nursing colleagues told me, had there been palliative care when her sister was diagnosed with breast cancer in Malawi, the whole family would have been spared months of suffering as they tried to support her through unrelieved pain.” Although palliative care services have been scaling up in Malawi, the study confirmed that access for households in rural areas was very limited. This novel research provides a foundation for future work to support international policy goals and improve services for communities most in need of palliative care.
Maya Jane Bates, Miriam R P Gordon, Stephen B Gordon, Ewan M Tomeny, Adamson S Muula, Helena Davies, Claire Morris, Gerald Manthalu, Eve Namisango, Leo Masamba, Marc Y R Henrion, Peter MacPherson, S Bertel Squire, Louis W Niessen, Palliative care and catastrophic costs in Malawi after a diagnosis of advanced cancer: a prospective cohort study The Lancet Global Health, 2021, ISSN 2214-109X, https://doi.org/10.1016/S2214-109X(21)00408-3. (https://www.sciencedirect.com/science/article/pii/S2214109X21004083The mission of the National Institute for Health Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:
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Funding high quality, timely research that benefits the NHS, public health and social care;
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Investing in world-class expertise, facilities and a skilled delivery workforce to translate discoveries into improved treatments and services;
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Partnering with patients, service users, carers and communities, improving the relevance, quality and impact of our research;
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Attracting, training and supporting the best researchers to tackle complex health and social care challenges;
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Collaborating with other public funders, charities and industry to help shape a cohesive and globally competitive research system;
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Funding applied global health research and training to meet the needs of the poorest people in low and middle income countries.
NIHR is funded by the Department of Health and Social Care. Its work in low and middle income countries is principally funded through UK Aid from the UK government.