End of Life Care (EOLC) in Care Homes
Lead Research Organisation:
The Open University
Department Name: Faculty of Wellbg, Educ & Lang Sci(WELS)
Abstract
Care homes play a crucial role in the end-of-life care (EOLC) of very old people (80+). About 30% of all deaths in England are of care home residents. The COVID pandemic further increased deaths in care homes, and care homes are predicted to become the most common place of death in England by 2040. Yet EOLC in care homes is under-researched. My PhD thesis explored EOLC in English care homes between 2019 and 2020. It was the first in-depth study on the topic in almost 20 years. During this Fellowship I will develop my PhD findings for academic and professional audiences to directly improve and foster the education and training of the care home workforce, which is a government priority.
Most sociological research on death in care homes was conducted in the 1990s. My academic publications will update the field drawing on new medical, policy and practice interventions. For example, I will write an article exploring the construction of dying in care homes as 'natural'. The article engages with discourses on non-intervention, a topic my mentor Dr Borgstrom has researched. My second article uses the concept of a 'regulation-compliant death' - a new concept I developed - to examine what kinds of 'good' death staff seek to achieve. Lastly, my book chapter formulates a new theoretical approach, the biopolitical economy of care homes, that provides new insights into the devaluation of care work and the role of care homes within the provision of EOLC in England.
The education and training of the social care workforce is a government priority. Research identifies EOLC in care homes as an area for improvement. Evidence reveals gaps in skills development at the frontline, managerial and leadership levels. The proposed plan of activities reflects this by engaging different audiences and stakeholders.
I will run an Evidence Café with care home staff to share insights on best practice for EOLC. The Evidence Café is an established Open University workshop method for knowledge exchange involving 20-30 participants. The Open University provides training and facilitators to help researchers run the workshop. Care home workers, nurses and managers will be recruited through the networks of the Open Thanatology group and the university's educational links with care employers.
Based on the Evidence Café, I will write an open-source article on the staff's role in caring for dying residents. The article will be part of the free courses provided by the Open University via OpenLearn to the general public (with millions of annual users); it will be distributed via networks to care home staff, residents and their families. EOLC is a crucial field and business opportunity for the care home sector. I will write an article for the leading professional-facing journal of the British care industry. Senior managers and executives of care homes read Care management Matters. My article will describe how they can support their staff to deliver better EOLC. I will also present at the largest conference of private care home providers in the UK since private providers make up 90% of the care home sector. Their owners, trustees, executives and champions of care excellence will learn about the challenges faced by staff in the care of residents' dying. The article and presentation will advocate to invest in workforce education and training on EOLC.
Finally, drawing on insights from my PhD work which revealed the importance of intimate and sexual relationships at the EOLC in care homes, I will develop a new area of work for future funding. To do this, firstly I will organise a symposium on intimate and sexual relationships at the EOL. Invited practitioners and researchers will discuss staff education and training in this under-supported area. Secondly, I will conduct a literature review with my mentor Dr Jones on this emerging area in the sociology of ageing and dying. Lastly, I will develop an application for the ESRC New Investigator call on this topic.
Most sociological research on death in care homes was conducted in the 1990s. My academic publications will update the field drawing on new medical, policy and practice interventions. For example, I will write an article exploring the construction of dying in care homes as 'natural'. The article engages with discourses on non-intervention, a topic my mentor Dr Borgstrom has researched. My second article uses the concept of a 'regulation-compliant death' - a new concept I developed - to examine what kinds of 'good' death staff seek to achieve. Lastly, my book chapter formulates a new theoretical approach, the biopolitical economy of care homes, that provides new insights into the devaluation of care work and the role of care homes within the provision of EOLC in England.
The education and training of the social care workforce is a government priority. Research identifies EOLC in care homes as an area for improvement. Evidence reveals gaps in skills development at the frontline, managerial and leadership levels. The proposed plan of activities reflects this by engaging different audiences and stakeholders.
I will run an Evidence Café with care home staff to share insights on best practice for EOLC. The Evidence Café is an established Open University workshop method for knowledge exchange involving 20-30 participants. The Open University provides training and facilitators to help researchers run the workshop. Care home workers, nurses and managers will be recruited through the networks of the Open Thanatology group and the university's educational links with care employers.
Based on the Evidence Café, I will write an open-source article on the staff's role in caring for dying residents. The article will be part of the free courses provided by the Open University via OpenLearn to the general public (with millions of annual users); it will be distributed via networks to care home staff, residents and their families. EOLC is a crucial field and business opportunity for the care home sector. I will write an article for the leading professional-facing journal of the British care industry. Senior managers and executives of care homes read Care management Matters. My article will describe how they can support their staff to deliver better EOLC. I will also present at the largest conference of private care home providers in the UK since private providers make up 90% of the care home sector. Their owners, trustees, executives and champions of care excellence will learn about the challenges faced by staff in the care of residents' dying. The article and presentation will advocate to invest in workforce education and training on EOLC.
Finally, drawing on insights from my PhD work which revealed the importance of intimate and sexual relationships at the EOLC in care homes, I will develop a new area of work for future funding. To do this, firstly I will organise a symposium on intimate and sexual relationships at the EOL. Invited practitioners and researchers will discuss staff education and training in this under-supported area. Secondly, I will conduct a literature review with my mentor Dr Jones on this emerging area in the sociology of ageing and dying. Lastly, I will develop an application for the ESRC New Investigator call on this topic.
Publications
Nedvedová S
(2025)
Event Review: Exploring the place of sexuality in death studies (in print)
in Mortality
Teggi D
(2025)
Demographic, Health, and Social Predictors of Place of Death in England, 2004-2013: Identifying Groups at risk of Hospital Death (in press: 10.1080/08959420.2025.2482298)
in Journal of Aging & Social Policy
Teggi D
(2024)
Death, Dying and Bereavement - New Sociological Perspectives
| Description | This ward was not aimed at the generation of new research finding, but the publication of PhD research findings and the career development of the PI (Dr Teggi). The fellowship achieved both outcomes. Dr Teggi published a paper based on her PhD in a Q1 medical journal (BMC Geriatrics), has a paper under review with a Q1 policy journal (The International Journal of Ageing and Social Policy) and has a forthcoming chapter in the ground-breaking flagship collection New Sociological Futures published by Routledge (book title: Death, Dying and Bereavement: New Sociological Perspectives). Dr Teggi was also appointed Lecturer in Sociology at the University of Bath before the end of the Fellowship. The role is open-ended and Dr Teggi is halfway through to conclude her first year of probation in the Department of Social and Policy Sciences at Bath. Key research findings which the ESRC Post-doctoral Fellowship allowed to refine for publication are as follows: 1) Senior staff request GPs to prescribe ICDs ahead of residents' expected death and review prescribed ICDs for as long as residents survive. Senior staff use this mechanism to ascertain the clinical appropriateness of withholding potentially life-extending emergency care (which usually led to hospital transfer) and demonstrate safe care provision to GPs certifying the medical cause of death. This enables senior staff to facilitate a care home death for residents experiencing uncertain dying trajectories. 2) Senior staff use the GPs' prescriptions and reviews of ICDs to pre-empt hospital transfers at the end-oflife. Policy should indicate a clear timeframe for ICD review to make hospital transfer avoidance less reliant on trust between senior staff and GPs. The timeframe should match the period before death allowing GPs to certify death without triggering a Coroner's referral. This period is currently 28 days and was 14 days pre-pandemic. |
| Exploitation Route | The policy reccomendation about the timeframe for the GP review of anticipatopatory medication could be implemented. |
| Sectors | Healthcare |
| Description | British healthcare managers, doctors and nurses are considering my recommendation that: A national timeframe for the review of palliative care medications would create a strong framework for end-of-life care provision in care homes, where residents survive one or more health crises from which both senior staff and GPs expected them to die. Senior staff have difficulties interpreting and trusting emergency healthcare plans written by clinicians and advising against hospital transfer (Harrad-Hyde, Armstrong and Williams, 2022; Teggi, 2022). Such plans often do not prevent hospital transfers at the end of life (Ibid.). By contrast, a GP's recent prescription or review of palliative care medications prevents most hospital transfers (Teggi and Woodthorpe, 2024). Senior staff understand the presence of prescribed palliative care medication as a clear clinical indication that the resident is not for emergency care, but supportive care in the care home. To avoid ambiguity as to whether the prescription is clinically valid as well as unnecessary Coroner's referrals, I recommend that the timeframe for GPs to review palliative care medications should match the period before death in which a doctor must visit a patient (dying in the community) to release the medical certificate of cause of death (MCCD) without triggering an automatic Coroner's referral. This period is currently 28 days and was 14 days pre-pandemic. |
| First Year Of Impact | 2023 |
| Sector | Healthcare |
| Impact Types | Societal Policy & public services |
| Description | BMJ Rapid Response: Is end-of-life anticipatory prescribing always enough? |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | British healthcare managers, doctors and nurses are considering my recommendation that: A national timeframe for the review of palliative care medications would create a strong framework for end-of-life care provision in care homes, where residents survive one or more health crises from which both senior staff and GPs expected them to die. Senior staff have difficulties interpreting and trusting emergency healthcare plans written by clinicians and advising against hospital transfer (Harrad-Hyde, Armstrong and Williams, 2022; Teggi, 2022). Such plans often do not prevent hospital transfers at the end of life (Ibid.). By contrast, a GP's recent prescription or review of palliative care medications prevents most hospital transfers (Teggi and Woodthorpe, 2024). Senior staff understand the presence of prescribed palliative care medication as a clear clinical indication that the resident is not for emergency care, but supportive care in the care home. To avoid ambiguity as to whether the prescription is clinically valid as well as unnecessary Coroner's referrals, I recommend that the timeframe for GPs to review palliative care medications should match the period before death in which a doctor must visit a patient (dying in the community) to release the medical certificate of cause of death (MCCD) without triggering an automatic Coroner's referral. This period is currently 28 days and was 14 days pre-pandemic. |
| URL | https://www.bmj.com/content/381/bmj.p1106/rr-1 |
| Description | Law Commission Burial and cremation Consultation Paper 263 |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | Our research has directly informed policy and legal recommendations by the Law Commission's review of burial and cremation legislation. The key changes influenced by our unpublished report on Muslim communities' attitudes towards grave reuse (Woodthorpe, Teggi and Crawley, 2024) are: 1. Recognition of religious and cultural needs in grave reuse • Our research contributed to the Law Commission's recognition of religious concerns regarding grave reuse, particularly within Muslim communities. • The consultation paper now acknowledges that grave reuse should respect religious mandates, including ensuring that only Muslim remains are placed in Muslim graves, that remains are sufficiently decomposed, and that grave leaseholders provide informed consent. 2. Incorporation of community consultation in burial legislation • The Law Commission has incorporated our recommendation for structured consultation with Muslim scholars, funeral directors, and faith leaders to ensure any new legal provisions align with religious principles. • The consultation paper now explicitly recommends ongoing engagement with religious communities and cemetery managers to create locally appropriate, yet legally consistent policies. 3. Safeguards for consent in grave reuse • Our findings highlighted that grave reuse is conditionally acceptable within Muslim communities if proper consent mechanisms are in place. • The consultation paper now emphasizes the need for clear legal frameworks outlining how consent from families or grave leaseholders will be obtained, addressing: o What happens if consent cannot be given (e.g., no surviving relatives). o How decision-making processes for older graves will be structured. o The role of public vs. private cemetery governance in ensuring protections. 3. Mandatory disclosure of grave reuse in burial agreements • Our research underscored the importance of transparency in burial rights to prevent religious conflicts. • As a result, the Law Commission is proposing new legal requirements for burial authorities to explicitly inform families if a grave is subject to reuse, ensuring that no religious group is unknowingly buried in a manner contrary to their beliefs. 4. Establishment of Equitable Burial Space Regulations • The consultation paper now acknowledges the need for fair distribution of burial space across different faith groups. • Our research findings contributed to proposals for ensuring equal access to burial space while preventing localized inequalities, particularly in areas with high demand for religious burials. 5. Long-Term Sustainability of Burial Law Reform • Our recommendations emphasized balancing long-term sustainability with cultural respect. • The Law Commission is now considering policy adjustments that include: o The potential for future graves to be dug deeper to accommodate multiple burials, delaying rather than eliminating the need for grave reuse. o Regulatory mechanisms to avoid a postcode lottery, ensuring standardized policies across burial sites. Through our contributions, the Law Commission's proposals now integrate religious and ethical considerations into the legal framework governing grave reuse, burial rights, and cemetery management. These policy changes will help create a more inclusive and sustainable burial system in England and Wales while safeguarding religious autonomy in funerary practices. Our research has ensured that grave reuse legislation will be implemented in a way that is sensitive, equitable, and widely acceptable, reinforcing the importance of consultation with minority communities in shaping public health laws. |
| URL | https://lawcom.gov.uk/project/burial-and-cremation/ |
| Description | How do different communities and professionals view the rights of deceased people, or others, to make decisions about dead bodies, funeral and remains? |
| Amount | £10,716 (GBP) |
| Funding ID | Research England Policy Support Fund Grant (ref. RE-P-2024-01) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2024 |
| End | 07/2025 |
| Description | Open Societal Challenges (OSC) Intimacy and Ageing Well |
| Amount | £41,600 (GBP) |
| Organisation | Open University |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 05/2023 |
| Description | There's no place like home? Exploring dying athome in urban poverty (Starting September 2025) |
| Amount | £999,580 (GBP) |
| Funding ID | Waiting on the ref number |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2025 |
| End | 06/2028 |
| Description | UKRI Policy Support Fund: The future of critical public health deathcare infrastructure in England and Wales |
| Amount | £13,600 (GBP) |
| Funding ID | SR11936856 |
| Organisation | University of Bath |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 02/2024 |
| End | 07/2024 |
| Description | NIMO - Italian Network on Death and Oblivion |
| Organisation | Italian Space Agency (Agenzia Spaziale Italiana) |
| Country | Italy |
| Sector | Public |
| PI Contribution | I am contributing to developing a newtork of italian academics workin of the death studies. The group is transdisciplinary, involving academcis from psychology, anthropology, history and the social sciences, as well as third sector organisations (mostly funerary service providers). |
| Collaborator Contribution | I attend monthly meeting and I will record a podcast in Italian to disseminate the research fiundings from my ESRC-funded PhD and postodoctorate. |
| Impact | I will record a podcast and update this record when the podcast is released. |
| Start Year | 2024 |
| Description | Open Societal Challenges (OSC) Intimacy and Ageing Well |
| Organisation | Open University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I am a co-investigator on the funding application (Open University internal funding) and the research project. I am the early-career researcher and medical sociologist with expertise in againg in the group. I bring my contacts with care home providers and older adults organisations to interview adults aged 65+ (and care home residents) on their experiences of intimacy and sexuality. |
| Collaborator Contribution | My co-investigators Professor Naomi Moller, Professor Rebecca Jones and Dr Andreas Vossler invited me to co-write the research funding proposal project to get internal funding at the Open University when I was a temporary member of staff (ESRC Post-doctoral Fellow). Dr Vossler is sharign with me his knowledge of cunducting systematic literature review. Professor Naomi Moller is sharing with me her expertise of interviewing adults on intimacy and sexuality topics. Professor Rebecca Jones is continuining to act as an informal mentor after the mentoring me formally during the ESRC Post-doctoral Fellowship. |
| Impact | The collaboration is multidisciplinary. The disciplines involved are psychology (Professor Moller, Dr Vossler) and sociologogy (Professor Jones and Dr Teggi). There are no formal outcomes of the collaboration yet, but a systematic literature review paper is in preparation and primary data is being collected. About the project: There is a lot of research that shows that good relationships support people's wellbeing and health: this is true for older adults just as it is for younger. However, most of the research focus for older adults has been on wider social relationships to date. Our project instead focusses on close relationships, and the experience of intimacy in later life, including emotional closeness, comforting physical touch and sexual intimacy. The aim of the project is to elicit understandings about what intimacy is and how or whether it matters for people aged 65+, living in a care home or at home, and what might be challenges to or supportive for building intimacy in old age. The project involves asking both older adults and health care professionals who work with older adults about their experiences, perceptions, and opinions on intimacy in older people. By identifying the most important issues with and barriers to intimacy in later life, it is hoped that the research will support more older adults to experience intimacy in ways that are right for them and which support their health and wellbeing. |
| Start Year | 2023 |
| Description | Visiting Researcher at the International Lab for Innovative Social Research (ILIS) |
| Organisation | University of Salerno |
| Country | Italy |
| Sector | Academic/University |
| PI Contribution | I have established a new collaboration with Professor Giuseppe Masullo at the International Lab for Innovative Social Research (ILIS) to scope the potential for a project on sexual and relationship wellbeing in old age and digital technologies. |
| Collaborator Contribution | Professor Giuseppe Masullo is the director of the International Lab for Innovative Social Research (ILIS). He contributes expertise in digital research methods as well as a network of academics working on sexuality to the development of the project proposal. |
| Impact | No outputs yet. |
| Start Year | 2024 |
| Description | Academic Networking Event - Intimacy & Sexuality in Old Age: The Research Agenda |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | I organised a small event with 6 academics working at the intersections of old age and sexuality to map underresearched areas and receive feedback on a research proposal on supporting care home residents' expressions of intimacy and sexuality. I am now developing the project in my current position as a probationary Lecturer in Sociology at Bath (open-ended contract). |
| Year(s) Of Engagement Activity | 2023 |
| Description | BBC Ideas Video and Interactive Media Source on Viagra and Sexuality in Old Age |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | I worked with BBC Ideas to produce an educational video on Viagra. I considered how to use voice over and imagery to convey nuanced knowledge on sexuality to a large, young public audience, in an entertaining way. I also gained experience of balancing stakeholder and academic priorities in the production process. Video released Dec 27: https://www.bbc.co.uk/ideas/videos/a-brief-history-of-viagra/p0h0pk03?playlist=made-in-partnership-with-the-open-university I also wrote and developed an interactive tool to engage a general audience, and profesionals working with older adults, with the topic of sexuality in old age: https://connect.open.ac.uk/bbc-ideas/health-wellbeing-sports A few excerpts from the Open University Interactive Source (link on the right): Gayle Rubin is an American anthropologist who researches sexuality and gender. In the early 1980s she described how societies tend to think about sexual activity in hierarchical ways, with some forms of sex seen as morally preferable to others. --------- Different people draw their own personal charmed circle differently. What some people think is 'outer limits' other people think is good ordinary sex. But whilst making judgements about 'good' and 'bad' types of sex is very common, it can be useful and interesting to reflect on your own views and experiences. Sexual hierarchies change over history, often in relation to the introduction of new technologies, Viagra being a case in point. The charmed circle may look very different in a few generations time. As attitudes continue to shift, and new practices emerge, who knows what it might include in the future? |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.bbc.co.uk/ideas/videos/a-brief-history-of-viagra/p0h0pk03?playlist=made-in-partnership-w... |
| Description | NEW RESEARCH: Practices and Policies for end-of-life care |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | I wrote a blog to advertise a research paper I wrote based on my PhD research findings and during the time of the Fellowship. Advertisign of the blog and article was also supported by an "X" post reachign 1675 people in the UK. Blog's core content: Our new paper explores how care home staff collaborate with GPs to prescribe medication for the management of dying symptoms to residents ahead of need. This process is called anticipatory prescribing. The paper reveals that anticipatory prescribing extends the GP's medico-legal authority to make life-altering decisions to care home nurses and senior carers. Therefore, in the care home context, anticipatory prescribing is not only a pharmacological intervention for pain management and symptom control. It is also a mechanism allowing care home nurses and senior carers to decide to forego emergency ambulance care (mostly leading to hospital transfer) and enable palliative care provision and dying in the care home setting. The paper recommends that the timeframe for the GP to review palliative care medication should match the period before death in which a doctor must visit a patient dying in the community in order to release the medical certificate of cause of death (MCCD) without triggering an automatic Coroner's referral. This period is currently 28 days and was 14 days pre-pandemic. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.bath.ac.uk/announcements/new-research-practices-and-policies-for-end-of-life-care/ |
| Description | Stakeholder event and knowledge exchange day on End of Life Care Decisions in Care Homes |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Stakeholder event and knowledge exchange day on End of Life Care Decisions in Care Homes with care home managers, senior staff, and GPs. Hosted by Open Thanatology at the Open University. Online. July 11. I used an Evidence Cafe' methodology to elicit information about the applicability of my research finding on the management of residents's dying by care home staff. I got to engage with several viewpoints from: GPs, district nurses, care home manger, care home nurses, care home senior carers, and close companions of care home residents. My takeway is that care home managers and staff want to be able to apply a clearer process for decision making at the end of life. In particular, they want to know when it is appropriate to call an ambulance and when it is not, even if the resident is suspected to be dying. Care home staff agreed that anticipatory prescribing was a clear signal that the resident was not for ambulance emergency care, but for supportive care in the care home, with the provision of controlled drugs for pain relief, if the need arose. |
| Year(s) Of Engagement Activity | 2023 |