Dying in the Margins
Research type
Research Study
Full title
Dying in the Margins: Uncovering the reasons for unequal access to home dying for the socio-economically deprived
IRAS ID
270376
Contact name
Naomi M A Richards
Contact email
Sponsor organisation
NHS Greater Glasgow and Clyde
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
Summary of Research
There is consistent evidence that most people would prefer to die at home and that this is seen as a marker of a 'good death'. Whilst there has been recent success in some countries, including the UK, in reducing hospital deaths and increasing deaths at home, these gains have not benefitted everyone. Notably, people from more socio-economically deprived areas in the UK have been shown to be less likely to die at home compared to patients from higher socio- economic areas, and this gap is widening. People from socio-economically deprived areas are also less likely to die in a hospice or to access specialist palliative care, and more likely to have hospital admissions in the last 3 months of life. However, the reasons for this are not known. Our project therefore responds directly to the calls within the literature for socio-economically deprived groups to become an explicit focus for end of life care improvement. Using a range of innovative and participatory visual methods, we will examine barriers to, and experiences of, home dying for people living in poverty in both urban and rural locations. Specifically, we aim to discover: 1) what the specific needs, wants and experiences of people dying in socio-economic deprivation are with regards to end of life; 2) the influence of housing type, tenure, and suitability; and 3) the health and social care innovations which might reduce inequalities. Ultimately, this project will pioneer creative and ethically sensitive methods of working with those who have lived experience of socio-economic deprivation at the end of life, and harness their expert knowledge and insights. High-quality outputs will be developed to help educators, healthcare commissioners, politicians, professionals, and the general public, to reflect critically on the end of life care needs of everyone in society.Summary of Results
CONTEXT:
People who experience poverty and deprivation over the life course are likely to die younger, with increased co-morbidities. However, researchers are only beginning to establish a full picture of the disproportionate impact poverty has on how, when and where we die.There is consistent evidence that most people would prefer to die at home and that dying at home is seen as a marker of a 'good death'. The Dying in the Margins study (2019-23) and accompanying ‘Cost of Dying’ exhibition, aimed to generate insights into the myriad ways in which experiences of poverty shape the end of people’s lives in the UK.
FINDINGS:
Key findings from the underpinning research are:(1) Inability to die at home is influenced by spiralling costs, poor housing conditions, lack of adequate social care provision for people without family carers and the lack of a whole-systems approach (which is needed to link primary, secondary and social care, charitable third sector services council services and housing providers);
(2) In spite of the challenges listed above, and the poor material circumstances experienced by some, the symbolic value of ‘home’ persisted and was evidenced by participants wanting to remain at home.
(3) Service providers and multi-disciplinary teams need to move away from the idea that there are homes which are ‘inappropriate’ for palliative care delivery and adopt a flexible approach to enabling home dying across the social gradient;
(4) Impactful personal stories and images presented in exhibition formats can raise public awareness of the fact that people are dying in our communities and neighbourhoods, sometimes in distressing circumstances, and can act as a catalyst for political action.
IMPACT:
Through the participatory research process and the direct use of projects outputs (i.e. toolkits, guides and exhibitions) the project has had the following impacts:
1. Increased awareness about end-of-life inequities, via public exhibitions, TV, print and radio coverage;2. Stimulated policy debate (e.g. the Minister for Public Health committed to mainstreaming the principles of equity-informed end-of-life care in the upcoming Scottish Palliative Care Strategy, following a project-inspired parliamentary debate);
3. Improved the capacity of partners Marie Curie to campaign on the issue of dying in poverty and to teach health and social care professionals (i.e. using co-produced digital stories and toolkits).
4. Improved clinical practice (e.g. by increasing discussion of finances at the end of life within clinical settings, using the Money Matters Guide, and contributing evidence to the Chief Medical Officer’s guidance on social security) .
5. Influenced practice within the housing sector (e.g. by helping to prevent a Housing Association from evicting a participant following his wife’s death, leading to policy recommendations to extend eviction notices and benefits for bereaved co-inhabitants after a death).
6. Enhanced the capacity of people at the end of life to meaningfully express themselves and gain a political voice.
Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: outputs are inputted annually to the Researchfish platform hosted by UKRI
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Yes
If yes, describe or provide URLs to disseminated materials: 1. Quinn, S. and Richards, N. (2025) Dying in the margins: a longitudinal visual methods study to uncover the reasons for unequal access to home dying for people experiencing financial hardship and deprivation in Scotland, UK – a case study. In: Clark, D. and Samuels, A. (eds.) Research Handbook on End of Life Care and Society. Edward Elgar. (Accepted for Publication)2. Bradshaw, A., Richards, N. , Hussain, J. A. and Davies, J. M. (2024) We need to talk about social class: Why theories of social class matter for understanding inequities in palliative and end-of-life care. Palliative Medicine, (doi: 10.1177/02692163241296478) (Early Online Publication)
3. Quinn, S. and Richards, N. (2024) The cost of dying exhibition: public, professional and political reactions to a visual exhibition depicting experiences of poverty at the end of life. Medical Humanities, (doi: 10.1136/medhum-2024-012950) (Early Online Publication)
4. Richards, N. , Quinn, S. , Carduff, E. and Gott, M. (2024) Dying in the margins: Experiences of dying at home for people living with financial hardship and deprivation. SSM - Qualitative Research in Health, 5, 100414. (doi: 10.1016/j.ssmqr.2024.100414)
5. Quinn, S. , Ferguson, L., Read, D. and Richards, N. (2024) “The Great Escape”: how an incident of elopement gave rise to trauma informed palliative care for a patient experiencing multiple disadvantage. BMC Palliative Care, 23(1), 61. (doi: 10.1186/s12904-024-01374-x) (PMID:38419002) (PMCID:PMC10900545)
6. Richards, N. , Quinn, S. , Mitchell, M., Carduff, E. and Gott, M. (2023) The viability and appropriateness of using visual methods in end of life research to foreground the experiences of people affected by financial hardship and deprivation. Palliative Medicine, 37(4), pp. 627-637. (doi: 10.1177/02692163221146590) (PMID:36609208)
7. Quinn, S. , Richards, N. and Gott, M. (2023) Dying at home for people experiencing financial hardship and deprivation: how health and social care professionals recognise and reflect on patients’ circumstances. Palliative Care and Social Practice, 17, p. 26323524231164162. (doi: 10.1177/26323524231164162) (PMID:37025502) (PMCID:PMC10071150)
8. Richards, N. (2022) The equity turn in palliative and end of life care research: lessons from the poverty literature. Sociology Compass, 16(5), e12969. (doi: 10.1111/soc4.12969)
9. Rowley, J., Richards, N. , Carduff, E. and Gott, M. (2021) The impact of poverty and deprivation at the end of life: a critical review. Palliative Care and Social Practice, 15, p. 26323524211033873. (doi: 10.1177/26323524211033873)
REC name
North of Scotland Research Ethics Committee 2
REC reference
20/NS/0032
Date of REC Opinion
2 Apr 2020
REC opinion
Further Information Favourable Opinion