Dying in the Margins: uncovering the reasons for unequal access to home dying for the socio-economically deprived

Lead Research Organisation: University of Glasgow
Department Name: School of Interdisciplinary Studies

Abstract

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 and to access specialist palliative care. However, the reasons for this are not known. Interviews with stakeholders in the consultation phase of this application suggested there is a pressing need for research which furthers understanding of the effects of poverty both on people's opportunities to die at home and their overall end of life experiences. In particular, there is a need for people with direct experience of deprivation and marginalisation to articulate, on their own terms, gaps in current support and potential strategies to improve end of life care for their communities.

Our project responds directly to the calls within the literature for socio-economically deprived groups to become an explicit focus for end of life care improvement. We will examine barriers to, and experiences of, home death 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 end of life; 2) the influence of housing type, tenure, and suitability on enabling home dying for people living in socio-economic deprivation; 3) the health and social care innovations which might reduce inequalities, and 4) whether and how far our chosen research methods - participatory visual methods - can generate fresh insights into the dying worlds of the socio-economically deprived and support the translation of findings into practice and policy change.

We will use photo-voice, digital storytelling, and the skills of a professional photographic artist, alongside more traditional word-based interview, focus group and observational methods to access the life-worlds and day-to-day experiences of people who are dying in poverty. Both the PI and Co-I (MG) have prior experience deploying these methods and witnessed the multiple ways in which they empower participants to take ownership of the process and the findings. In our previous research they have also generated reusable learning objects and impactful imagery which has shaped public and political opinion. We are therefore confident our choice of methods will enable the project to contribute to a political agenda which recognises the specific health and social care needs of poorer families.

This ambitious project will result in multiple interlinked datasets which will be used in a rigorous and self-reflexive way by the project team. 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. 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, to propose innovative solutions to address structural and material inequalities.

Planned Impact

Poverty is on the rise in the UK, with one in five currently experiencing income poverty (JRF 2017). As numerous recent articles and reports have emphasised, very little is currently known about the lived experiences of people dying in poverty, and consequently unequal access to home death and specialist care has not been effectively addressed and is, in fact, increasing (Gao et al. 2013; Sleeman et al. 2016; Scottish Partnership for Palliative Care 2018). Findings from this project will generate significant real-world impact in both instrumental and conceptual ways. First and foremost, findings from the research will be used to inform decision-makers, healthcare providers and commissioners of services about the types of housing issues, barriers to home dying, and ultimately barriers to achieving a 'good death' faced by those living in socio-economic deprivation. Innovative solutions discovered through our ambitious programme of work will be directly informed by the strengths and strategies of individuals and carers with direct experience of living and dying in poverty. These will be discussed with a wide spectrum of stakeholders, including politicians and clinicians, during the 'consultation' phase of the research, with the aim of encouraging stakeholders to take ownership of the findings and move to implementing changes to policy and service provision. This consultation phase will immediately follow the launch of a high-quality, high-profile and sensitively co-produced exhibition at the Scottish Parliament and in central Glasgow, in collaboration with Marie Curie, which will generate significant media coverage. We also aim for the various image-based 'reusable learning objects' created to find widespread usage internationally in education programmes for health and social care professionals. The research will help to forward the public health agenda in palliative care, which seeks to make dying 'everyone's business'. Ultimately, we aim to reduce the stigma and social isolation for all who are facing the end of their life, or someone else's life, and specifically those who do so from a position of extremely limited resources.

The non-academic beneficiaries of the project are extensive: individuals and families directly participating in the research; people living in areas of socio-economic deprivation in the UK and internationally; policy-makers and advocacy organisations (e.g. Marie Curie; Scottish Partnership for Palliative Care; Dying Matters coalition), poverty (e.g. JRF) and housing focused organisations (e.g. Shelter); health and social care professionals, especially those working in palliative care (GPs, district nurses, aged care sector); and the public, who are all facing their own mortality, or living with the effects of bereavement.

Our plans for generating impact include: close involvement of the PPI group and a detailed 'process evaluation' throughout the lifecycle of the research to ensure user views are kept front and centre and any impacts on participants are understood and recorded; major launches of our 'portable' exhibition of visual outputs with multiple stakeholder consultations to discuss the policy and service implications of the research; a dedicated and expertly curated project website to help disseminate outputs internationally; an 'easy read' briefing paper summarising findings and disseminated to end of life, housing and poverty organisations; generation of significant media coverage to raise public awareness; and working with health and social care educators about ways of incorporating the reusable learning objects generated into relevant curricula and thereby influencing the perspectives of those providing front-line end of life services. Images are pervasive in contemporary culture and are regularly shown to mobilise action where words alone do not. The visual outputs, which will have both emotional power and versatility, will have long-term usage in learning environments around the world.

Publications

10 25 50

 
Title Great Daffodil Appeal Event, Scottish Parliament 
Description Showed two images from the study and distributed postcards of 6 images from the study to raise awareness of the stories behind the images and some of the challenges faced by people who are experiencing financial hardship while they are dying. 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2023 
Impact Positive feedback from 15 MSPs who engaged with our stall at the event and who spoke about what the images meant to them. Took away sets of postcards which may result in further impacts. 
 
Description We worked intensively with 12 participants to produce photovoice images, professional portraits and documentary images, and digital stories, which will have a wide reach beyond the lifetime of the grant. The visual data and outputs, including a series of exhibitions curated in different venues in Scotland, brings to life some of the challenges experienced by people living on a low income and experiencing material deprivation at the end of their life, but who wanted to remain at home for as long as possible. The images also show the strength and resilience which participants brought to their situation. This project was always designed to raise awareness among policy, practitioner, and public audiences about what dying is like for people who are not 'typical' palliative care patients (middle class, white, insecurely housed etc) and who are struggling to meet the costs of dying which have increased significantly in recent years along with the cost of living. There are so few (if any) images in existence which present such stories and this project has achieved that. The images and stories of participants have gained significant exposure through the public exhibitions and the other open access outputs, in addition to an exhibition and dedicated debate at the Scottish parliament, and a total of 50+ MSPs engaging with the study (combination of at Scottish Parliament and the Mitchell Library in Glasgow). Findings from the study have fed into Marie Curie's policy and campaign work about Dying in Poverty, and a proposed 'Right to Palliative Care' Bill currently at public consultation stage.
Exploitation Route NON-ACADEMIC: Marie Curie and other advocacy groups are using the outputs of the study to lobby for systemic changes to improve people's end of life experiences, including access to the state pension, more secure tenancy rights for the recently bereaved, and a fast-track service for housing adaptation and maintenance.
ACADEMIC: The findings and methods are being used by researchers who are researching issues of equity in palliative and end of life care. Health Improvement Scotland are incorporating study findings in their work on housing and end of life. Researchers at the Cicely Saunders Institute, King's College London, are devising similar projects using comparable methods. There are invitations to host the exhibition in other parts of the UK, invitations to give webinars internationally, and invitations to sit on advisory committees of projects exploring similar issues. We are also now working on the Scottish sub-project of a Marie Curie funded grant about rural poverty and its impact at the end of life.
Sectors Communities and Social Services/Policy

Creative Economy

Healthcare

Culture

Heritage

Museums and Collections

URL https://www.gla.ac.uk/research/az/endoflifestudies/projects/dyinginthemargins/
 
Description Dying in the Margins has spearheaded new thinking around the importance of equity-informed end-of-life care, and the need to look beyond healthcare to mitigate the experiences of poverty to enable a 'good death' for all. The team has sought to enhance capacity in local government and the third sector, and shape practice within the housing sector, in addition to healthcare. Impacts on thinking include: • Increased awareness about end-of-life inequities, via attendance at public exhibitions, TV, print and radio (e.g. BBC, Herald), as highlighted by visitor feedback, e.g. "It was upsetting to hear about how deprivation means that some people have a harder end-of-life as a result. I had never thought about that." (Visitor A) • The Minister for Public Health has 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. The team's collaborative approach has improved the capacity of partners Marie Curie to: • Campaign on the issue of dying in poverty, using images and stories from the study. • Teach health and social care professionals, using digital stories and toolkits. The team's approach has also improved the capacity of participants to meaningfully express themselves and gain a political voice, e.g. "I hope by taking part in this study that I will be a voice for people like me who are struggling." (Participant B) The study has enhanced clinical practice by: • Increasing discussion of finances at the end of life within clinical settings, using our Money Matters Guide. • Contributing evidence to the Chief Medical Officer's guidance on social security. As well as practice within the housing sector by: • Preventing 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.
First Year Of Impact 2021
Impact Types Cultural

Societal

Policy & public services

 
Description Citation in All Party Parliamentary Group for Terminal Illness inquiry report into housing and fuel poverty at end of life
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact This report was focused on drawing attention to the issue and is part of a package of research and policy recommendations which is being taken forward by the APPG and Marie Curie over the next few years which, if implemented, could result in some major changes for people experiencing financial hardship at the end of life.
URL https://www.mariecurie.org.uk/globalassets/media/documents/policy/appg/h406-appg-report-4-interactiv...
 
Description Healthcare Improvement Scotland - New Focus on End of Life
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
URL https://blog.healthcareimprovementscotland.org
 
Description UK Parliament POSTNOTE on Palliative and End of Life Care
Geographic Reach National 
Policy Influence Type Citation in other policy documents
URL https://post.parliament.uk/research-briefings/post-pn-0675/
 
Description Dying as a health and social justice issue: exploring the impact of deprivation
Amount $119,999,915 (NZD)
Funding ID 20/155 
Organisation Health Research Council of New Zealand (HRC) 
Sector Public
Country New Zealand
Start 01/2020 
End 12/2023
 
Description ESRC-IAA
Amount £1,000 (GBP)
Funding ID ES/T501918/1 
Organisation University of Glasgow 
Sector Academic/University
Country United Kingdom
Start 06/2021 
End 07/2022
 
Description Using photography to explore social issues: Class with Margaret Mitchell
Amount £500 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 09/2021 
End 12/2021
 
Description Advisory Group for Marie Curie funded research into the number of people dying in poverty in the UK undertaken by Loughborough University 
Organisation Loughborough University
Country United Kingdom 
Sector Academic/University 
PI Contribution I was invited to sit on the advisory committee for this project which is a quantitative focused project on the same topic as Dying in the Margins. The advisory committee has met a number of times over the last year and I have given feedback on the (pending) Marie Curie report.
Collaborator Contribution Marie Curie staff and researchers on the grant at Loughborough University have fed indirectly into Dying in the Margins through conversations about data and policies had by all advisory group members at meetings.
Impact The collaboration is social science focused. The report funded by Marie Curie is forthcoming in the next few months.
Start Year 2021
 
Description Mental Health and Wellbeing in Advanced Illness Network (MAIN) 
Organisation University of Edinburgh
Country United Kingdom 
Sector Academic/University 
PI Contribution I was invited to be on the steering committee of this Marie Curie funded Network, run out of the University of Edinburgh. Based on my knowledge gained through leading the Dying in the Margins study, I am leading on work around multiple disadvantages. I will be leading the first webinar in March 2024 on the social determinant of mental health and how they affect the end of people's lives.
Collaborator Contribution see above
Impact The collaboration is multi-disciplinary, focused on mental health at end of life.
Start Year 2023
 
Description Unreached - the impact of financial insecurity and socioeconomic deprivation in rural and urban areas 
Organisation University of Southampton
Department Faculty of Health Sciences
Country United Kingdom 
Sector Academic/University 
PI Contribution Dr Lynn Calman and Professor Mari Lloyd-Williams approached me to conduct the Scotland based part of their Marie Curie funded study: "Unreached - the impact of financial insecurity and socioeconomic deprivation in rural and urban areas". This qualitative study begins in February 2024 for 18 months and will re-employ Dr Sam Quinn as part of the research team.
Collaborator Contribution Dr Sam Quinn and I will deliver the Scottish part of this study, subcontracted by the University of Southampton as part of their Marie Curie grant.
Impact None as yet
Start Year 2024
 
Description Arts Lab meeting for the Reading and Writing Death and Dying Arts Lab at the University of Glasgow - THEME: Inequalities 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact 25 writers, artists and makers of various sorts from Glasgow, as well as further afield, attended a 2 hour workshop of the University of Glasgow's Arts Lab "Reading & Writing Death & Dying" which is co-lead by Dr Richards. The theme of this meeting was 'inequalities' and we discussed writing examples of death, marginalisation, COVID-19 and the 'social gradient' in health inequalities.
Year(s) Of Engagement Activity 2021
 
Description Cost of Dying Exhibition (Glasgow Mitchell Library) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Thousands of people will have seen this 2 month exhibition in what is one of the largest libraries in Europe. We also held a panel debate which was attended by about 40 people where the themes arising in the exhibition were discussed.
Year(s) Of Engagement Activity 2023
 
Description Cost of Dying Exhibition (Palliative Care Congress, Edinburgh) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We organised an exhibition of Margaret Mitchell's photographs and thematised text panels showing participants photovoice images, along with the digital stories at the largest annual palliative care conference in the UK. The exhibition was held in the Edinburgh International Conference Centre in a busy thoroughfare ensuring that all attendees to the conference were exposed to the images and themes of the study.
Year(s) Of Engagement Activity 2023
URL https://twitter.com/Dying_Margins/status/1636670444064452608
 
Description Cost of Dying Exhibition (Scottish Parliament) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact The Cost of Dying exhibition was installed in the Scottish Parliament for three days and had visits from over 40 MSPs, including Scottish Government Ministers including First Minister Humza Yousaf. The exhibition coincided with a dedicated debate about the issues arising in the debating chamber.
Year(s) Of Engagement Activity 2023
URL https://www.scottishparliament.tv/meeting/members-business-s6m-10827-paul-okane-dying-in-the-margins...
 
Description Drumchapel GP Practice, Glasgow 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact 5 clinicians and link workers associated with the Drumchapel medical practice attended the meeting where we showed early visual data from the study in order to stimulate recruitment. This lead directly to the practice link worker recruiting a participant to the study.
Year(s) Of Engagement Activity 2021
 
Description GPs at the Deep End Group Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 30 GPs working in Scotland's most deprived areas were shown early findings from the study in order to stimulate support for recruitment. Those attending commented on how powerful the visual data were.
Year(s) Of Engagement Activity 2021
 
Description IPPR Academic plenary on end of life care 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact 30 professionals practitioners, academic researchers and policy-makers attended a talk as part of an Institute for Public Policy Research academic plenary on end of life care on 23rd June 2021. This led to follow up meeting with Lorraine Hansford of Exeter University who is working on related project on poverty and a future potential collaboration.
Year(s) Of Engagement Activity 2021
URL https://www.ippr.org/news-and-media/press-releases/threat-to-end-of-life-care-services-as-deaths-exp...
 
Description Marie Curie Research Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Over 100 people attended our Marie Curie presentation "Dying in the Margins: A photovoice project investigating the reasons for unequal access to home dying for people experiencing financial hardship" (online) on February 1st 2022. There were a number of highly pertinent questions asked about our method and findings and very supportive and interested comments in the Zoom chat. The presentation was recorded and accessed asynchronously by more people. The project team received two emails subsequently from people working in the field 1) offering support and help recruiting and 2) request to use the reusable learning objects created during the project in training.
Year(s) Of Engagement Activity 2022
URL https://player.vimeo.com/video/675881809?h=e3cebfcb99
 
Description Marie Curie Research Conference 2023 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Naomi Richards gave a 20 minutes presentation to 420 people (online) sharing findings from the research and some policy implications. Subsequently invited to give a presentation at the University of Huddersfield. Sparked a number of questions and comments: Very powerful, thank you; so powerful thank you, such important stories; Such powerful stories - thank you to the participants for sharing them; Thank you for sharing these powerful stories; So important these stories are heard and go on to educate others; Thank you for sharing such powerful stories, so important for these to be shared; I haven't seen digital methods being used in research before, incredibly powerful. These videos and photos speak so many words. Thank you for sharing; This methodology is new to me and it's so impactful. Will definitely be reading everything you're posting, thank you! Very powerful presentation; Great work. There needs to be more pressure on government to address these issues; Excellent presentation; thank you, this was very thought provoking; Wow Very Powerful Presentation, Thank you Naomi; Thank you so much very powerful case studies, images and stats. This area of work is needing a lot of attention. Really good presentation; This was an eye opening presentation thank you; Good luck with exhibition Naomi. So great to see the innovative methods here. I'm sure you'll get lots of engagement; The presentation powerfully reinforces a holistic approach within palliative and end of life care that provides a focus on the social implications as at least equal to any medical issues; Arguably participating may give people a sense of agency as they are contributing to a research project that will hopefully raise awareness of their day-to-day realities; Yes, it gives them a voice about social injustice - their legacy. Well said; As a research nurse in palliative care, feedback I receive from patients about participating in studies indicates that they value the time spent with them taking the time to listen and really hearing their experiences; Often Hospital Transplant will not take the carer and they have to follow on their own despite hospitals suggesting the carer accompanies
Year(s) Of Engagement Activity 2023
URL https://www.mariecurie.org.uk/research/annual-research-conference-2023
 
Description Presentation to Hospice New Zealand 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Online 50 minute presentation delivered to organisations delivering palliative care nationally across New Zealand watched live by 259 people on 1st Dec 2021. Subsequently contacted by 3 professional from different hospices and third sector organisations to be kept informed about the project and to confirm they had professional experience of the issues presented. Subsequent feedback collated by Hospice NZ was also excellent and showed strong support for the study and exploring themes around socio-economic inequity.
Year(s) Of Engagement Activity 2021
URL https://www.hospice.org.nz/lectures/dying-in-the-margins-december-2021/
 
Description The Cost of Dying Exhibition (Advanced Research Centre, University of Glasgow) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Over 1000 people attended a curated exhibition of project outputs including photographs and digital stories by participants and photographs by Margaret Mitchell. We collected feedback from visitors and held a panel discussion attended by 50 people. Visitors reported increased awareness of the issues and a desire to see change.
Year(s) Of Engagement Activity 2023
URL https://youtu.be/_rBgry9TsQo
 
Description Wolfson Palliative Care Research Centre, Hull York Medical School, Jan 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Interactive workshop for 30 clinicians/researchers- used digital stories and case studies to prompt discussion. Sparked questions and lively debate and indications the digital stories will be used for education and training by those in attendance.
Year(s) Of Engagement Activity 2023