Palliative care and universal health coverage

31st October 2019

Universal Health Coverage (UHC) is a key policy goal of the World Health Organization.  It links quality and effectiveness of health services to end-user protection from financial hardship. Up to 61 million people, including 2.5 million children live and die without access to palliative care.

Out-of-pocket expenditure accounts for 23% of global health expenditure and 45% of health expenditure in low/middle-income countries (LMIC). Even where the majority of health services are delivered free of charge, it is individual households that bear the brunt of financing healthcare for chronic and life-limiting illnesses.

Palliative care has the potential to reduce out of pocket expenditure particularly when integrated within health systems.  Palliative care gives timely access to pain and symptom management and reduces recurrent hospital visits.

Researchers are undertaking a study to explore the impact of palliative care on household poverty in Blantyre, Malawi, a low-income country.  Life expectancy in Malawi is 64 years.  The country has the highest incidence and mortality of oesophageal and cervical cancer in the world.  The prevalence of cancer is on the rise. Radiotherapy is only available outside the country. 

Researchers decided to explore concepts of wellbeing and cost areas of importance for households affected by advanced cancer by conducting a qualitative study using Photovoice.

In the study patients and family caregivers utilised digital cameras to document experiences of living with life-limiting illness. Through participatory analysis of photographic images, named themes and sub-themes were identified. Data on areas of out of pocket expenditure relevant to healthcare were extracted from audio recordings.

Researchers also undertook a systematic literature review of populations requiring palliative care in low- and middle-income countries to decide which tools could be adapted to gather household level data on out of pocket expenditure and wellbeing in a palliative care population in Malawi. The World Health Organization TB patient cost instrument was identified as suitable for adaptation. 

The new survey Patient-and-Carer Cancer Cost Survey (PaCCCt) was developed, translated and tested.  Forward and back translation into local language was conducted by the transcription team at an international research institute.  A tablet based version of the PaCCCt was piloted in Blantyre, Malawi.  The PaCCCt includes the Integrated Palliative Care Outcome Score (IPOS – developed by King’s College London at the Cicely Saunders Institute  

The PaCCCt survey is currently only suitable for households affected by cancer-related illnesses. Such data are critical to inform future economic evaluations and to influence global health policy on UHC with the aim of improving access to palliative care.

Bates MJ, Namisango E, Tomeny E, Muula A, Squire SB, Niessen L. Palliative care within universal health coverage: the Malawi Patient-and-Carer Cancer Cost Survey. BMJ Support Palliat Care. 2019.

BMJ Support Palliat Care. 2019 Oct 3. pii: bmjspcare-2019-001945. doi: 10.1136/bmjspcare-2019-001945. [Epub ahead of print]