Associate Feature: Breaking the cycle for a better end of life

It is impossible to consider poverty without structural inequality, deprivation and social exclusion. The intersection between these long-standing issues creates a harmful combination affecting people’s short and long-term health. When someone is terminally ill and approaching the end of life, the effect can be devastating.

Poverty can take numerous forms and vary in severity. British sociologist, Professor Peter Townsend, researched and wrote extensively about the economics of poverty and identified a range of resources including diet, participation in activities, living conditions and amenities which if individuals, families and groups do not have sufficient access to compared to society as a whole, can be said to be in poverty and face exclusion. For those facing a lack of these resources there is a risk of falling into a vicious cycle of continued and worsening exclusion, health inequity and increased deprivation. 

Existing evidence shows that people who experience this cycle over a longer period of time or their lifetime are expected to die younger, and there is a noticeable gap between life-expectancy in the most and least deprived areas. National Records of Scotland data mapped against the Scottish Index of Multiple Deprivation 2020 shows there is a 13.5-year difference between men living in the most and least deprived areas, for women there is a 10-year difference. 

Much of Townsend’s research is over 50 years old, yet these issues are still as prominent and life threatening as they were then. The question is why?

Preliminary findings from Marie Curie research on poverty at the end of life shows that in 2019 in Scotland, over a quarter (27%) of people of a working age (20-64 years old) were in poverty in the their last year of life, as well as 12% of people over 65. 

Our research found that across the UK one of the key differences was age; the majority of those dying at working age had experienced poverty at some point in the previous five years and a substantial minority moved below the poverty line in the last two years of life, or experienced movement in and out of poverty. 

These findings highlight the importance of maximising the income people can receive when terminally ill and approaching the end of life, including ensuring social security benefits reach all terminally ill people and their carers, and are sufficiently high enough to ensure families can at least live above poverty line. 

Ethnicity also varied greatly in the findings, across the UK those in ethnically diverse groups are particularly likely to move into poverty at the end of life, while those from Asian minorities are more likely to be consistently in poverty. 

Covid-19 has had a significant impact on poverty, deprivation, exclusion; deepening existing health inequalities. Data has shown that deaths from Covid-19 have been higher in areas of socio-economic deprivation in Scotland; over double in the most deprived areas than the least deprived.

We know from existing evidence that terminally ill people affected by this cycle of poverty, deprivation, exclusion and wider health inequalities have historically faced multiple barriers in accessing and engaging with palliative care support, from lack of care options and health literacy to barriers because of race, gender, faith, age or sexuality amongst others.

Earlier this year in its Programme for Government 2021-22, the Scottish Government committed to a new National Palliative Care Strategy. This is an opportunity which must be taken to tackle health inequalities for those who are terminally ill and at end of life, working inclusively and collaboratively with those who have lived-experience and all service providers to ensure that services are equipped and empowered to support our most vulnerable in society. We only get one chance to get end of life right.  
 

This article is sponsored by Marie Curie.