Published December 2022
End of life care is a sensitive but hugely important subject. Many people say that they would like to die at home rather than in hospital. Yet living in a more deprived area means you’re significantly more likely to die in hospital, less likely to die in a hospice, and less likely to die at home. Joanna Davies is investigating why this happens, and how it might be changed to better fulfil people’s wishes.
My PhD project is aiming to better understand this sensitive but hugely important topic, to help more people die where they wishJoanna Davies, Dunhill Medical Trust PhD Research Training Fellow
End of life care is a ‘Cinderella’ subject; it’s under-funded and under-recognised, but relevant to everybody. Many people say that they would like to die at home rather than in hospital, but fewer than half of people in the UK do so. The reasons for end-of-life hospital admissions are complex and may be medically appropriate, but in many cases it could be avoided.
We know that some groups of people are more likely to have hospital admissions towards the end of life than others. For example, living in a socioeconomically deprived area means you’re significantly more likely to die in hospital, and less likely to die in a hospice or at home. Prior to this project, there had been very little research into why this inequality exists and ways to mitigate it.
My PhD project is aiming to better understand this sensitive but hugely important topic, to help more people die where they wish.
Several phases of research
My PhD project is in several phases, each analysing existing evidence and datasets. In the first phase, I carried out a systematic review combining all of the international evidence in this area. We found that in high-income countries, low socioeconomic position is a risk factor for hospital death and other indicators of poor-quality end-of-life care, including lack of access to specialist palliative care. However, there were no studies investigating the reasons why this might be happening.
In the second phase, I analysed data from the English Longitudinal Study of Ageing (ELSA) – a nationally representative study that contains a huge amount of data on the health and social situation of people aged 50 and over in England – to investigate why people with lower socioeconomic status are more likely to die in hospital, and the different factors that contribute to this relationship.
We found that people with lower wealth tended to have worse health, and that this partly explained why they have more hospital admissions in their final years. This is important because it highlights the importance of health-need in driving different patterns of service use. However, although health-need is a major contributor, poor health still doesn’t fully explain why people with lower wealth die in hospital more often, and more work needs to be done on this topic.
End of life care is a ‘Cinderella’ subject; it’s under-funded and under-recognised, but relevant to everybody
Our findings highlight the importance of understanding how wealth and socioeconomic inequalities drive differences in health and care, and we hope they will be used to raise awareness among healthcare professionals and policymakers of the importance of taking these factors into account at the end of life.
In the final part of the project I used routinely collected clinical data to investigate variation in the symptoms and concerns of people nearing the end of their life across the breadth of society, to understand more about the needs of different patient groups. The analysis found that patients living in more deprived areas had significantly worse communication and practical concerns when they’re first assessed for what end-of-life care they need, suggesting that targeting resources to address these concerns could be a strategy to reduce inequalities.
Together with colleagues at the Cicely Saunders Institute, we are holding a workshop with organisations and other academics who are interested in inequality in end-of-life care and want to do something to change it. Our findings form part of a larger programme of work on inequalities in palliative and end-of-life care, that is seeking to influence policy and help to bring about changes that will support everyone’s wishes at the end of life, regardless of their background.
Part of something bigger
The Dunhill Medical Trust is an incredibly supportive funder. They have been brilliant at bringing together their PhD Fellows, including hosting meetings at their offices early on in our projects and creating a really lovely support network.
The DMT also holds events where they invite Fellows and other grant holders to present their work, as well as providing training sessions from expert speakers. It’s great to get the opportunity to present your work and hear about the broad range of projects and meet other researchers with an interest in older people, including those in fields very different from mine. It makes you feel like you’re part of something bigger and that the DMT is invested in your development.
Find out more
Our meta-analysis in PLOS Med, demonstrating consistent international evidence of socioeconomic inequality in palliative and end-of-life care, can be found here.
Our mediation analysis in the Lancet Public Health, which highlighted the importance of socioeconomically driven health differences in explaining patterns of hospital use towards the end of life, can be accessed here.
Our analysis of the relationship between area-based deprivation and the needs and concerns of palliative patients, published in Palliative Medicine, can be found here.
Some of our work was cited in a recent report from the King’s Fund on the role of NHS commissioners in ensuring quality end-of-life care.