Research Theme 1

Glenys Caswell (2022) Dying alone: Challenging assumptions. Published by Palgrave MacMillan.

For further information visit: https://link.springer.com/book/10.1007/978-3-030-92758-5

I realised, from talking to other people and from the reading that I did, that dying alone was generally considered to be a bad way to die. I wondered about this, because I also gained the impression that people often do die on their own. I decided that this was something which required exploration. So far, I have carried out two research projects on the topic of dying alone.

Project 1

‘Exploring perspectives on dying alone: A pilot study of sociological autopsy as research methodology’. Funded by a British Academy small grant. April 2014 – March 2016. This project tested out methods of recruiting participants and data collection, as well as generating some initial data.

Overview of findings

Methods

Two approaches were taken to the collection of research data. In the first, coroner records were used to explore cases where individuals had died alone at home and their bodies found later. In the second approach people who lived alone were invited to take part in an interview, and group interviews were also carried out with staff working in a hospice at home service.

Findings

1) Using coroner records

Available data, which included reports and statements in the coroners’ record plus, in one case, an interview with a previous work colleague, suggested that for some individuals it may be an active decision to live entirely alone and without social contact. Adam Jackson , for example, worked when he was younger, but withdrew from contact with colleagues on his retirement. He also had no contact with either health or social care professionals, and there was no evidence to suggest that he had been unable to make rational decisions about his own life. He died alone at home and his body was found some time later. The coroner’s conclusion after the inquest was an open one, as there was not enough evidence to assign a cause to his death.

2a) Interviews with hospice at home workers

This group of hospice at home workers care for people in the last weeks of their lives. Amongst their patients are a number of people who live alone, many of whom are determined to stay at home as they come to the end of their lives.  When an individual lives alone, however, professionals have concerns, including about safety, whether there is family to provide care, difficulties in managing pain and the lack of care packages to offer adequate support. Legally, when a person has the capacity to make their own decisions they can choose to stay at home alone, regardless of what professionals think. Although it does not happen often, patients will sometimes discharge themselves from hospital against professional advice. Although workers are keen to support patients in making their own choices, they had not considered the possibility that some people might prefer to be alone.

2b) Interviews with people living alone

Nine women and three men living alone were interviewed, with the youngest being 48 and the oldest 83. Key findings were that all participants valued the independence that they enjoyed through living alone. For this group a threat to that independence, whether through illness or infirmity, was perceived as more worrying than the idea of dying. Two thirds of participants believed that they would deal with a threat to their independence by accepting the need for care and adapting to their new circumstances. One third of participants had considered the possibility of taking pre-emptive steps should such a threat be perceived and they would either seek a means of assisted suicide or take their own lives. For most participants the idea of dying alone at home was not problematic, as it would mean a sudden pain free death. However, there were difficult aspects to such a death, such as concern about who might find their body and the length of time their body might lie undiscovered.

Project outputs

Peer reviewed journal articles:

Caswell, G. and O’Connor, M. (2018) ‘‘I’ve no fear of dying alone’: Exploring perspectives on living and dying alone’, Mortality,   http://dx.doi.org/10.1080/13576275.2017.1413542  

Caswell, G. (2018) ‘Researching the Dead: Using Sociological Autopsy to Explore Lone Deaths’, SAGE Research Methods Cases in Social Science Ethics. http://methods.sagepub.com/case/researching-the-dead-using-sociological-autopsy-to-explore-lone-deaths  

Caswell, G. and O’Connor, M. (2015) ‘Agency in the context of social death: Dying alone at home’, Contemporary Social Science, 10(3), 249-261 DOI:10.1080/21582041.2015.1114663

Other:

Caswell, G. (2018) ‘For some people dying alone is not such a bad thing – here’s why.’ The Conversation, Friday 19th January 2018. https://theconversation.com/for-some-people-dying-alone-is-not-such-a-bad-thing-heres-why-90034

Caswell, G. (2021) ‘Dying alone: Exercising a right or transgressing the rules?’. In Westwood, S. (ed.) The Regulation of the End of Life: Death Rights. Abingdon: Routledge. Pp. 205-218.

Invited talks:

Caswell, G. ‘Exploring lone deaths: developing research to improve understanding.’ Health Humanities network Early Bird researcher seminar, University of Nottingham.  19th July 2017.

Caswell, G. ‘Agency, death and dying.’ A right to die? – socio-legal perspectives. Keele University. 18th July 2017.

Project 2

‘Exploring the social management of lone deaths’. Funded by a Leverhulme Trust research project grant. August 2018 – October 2020. This project aimed to develop understanding of the social circumstances of lone deaths (when someone who lives alone dies alone at home and their body is undiscovered for an extended period of time) and to explore responses to such deaths of local authority workers and the news media.

Overview of findings

More people than ever before are living alone, raising concerns about social isolation, particularly amongst older people. Solo living increases the likelihood of dying alone at home. When this happens and the person has few friends or relatives, there is an increased chance that the body may not be discovered for some time. We describe deaths in these circumstances as ‘lone deaths’, and while most are of older people, it can also happen to younger people. Sometimes lone deaths are reported in the news, which often looks to blame either the person who died or their relatives, friends and neighbours for what has happened.

Our research

We collected in-depth information on ten cases of a lone death from as many sources as possible, including documents, interviews with people who knew the person when they were alive and people who responded to the lone death. We interviewed twelve professionals whose role brings them into contact with lone deaths and we observed four funerals of people who died alone at home.

Key messages

We found that:

• In a small number of cases the person who died had cut themselves off and effectively entered a period of social death prior to their physical death.
• In most cases, however, the death was of a private person who liked their own company, did not have a large circle of friends and whose family was small, non-existent or geographically spread.
• Our cases mostly contributed to society and their local communities in the same ways that most of us do, working in ordinary jobs and paying their taxes.
• The key message is that such a death could happen to almost anyone; to me, or to someone I know.

Conclusion

Dying in such a way need not indicate that a person is odd or deviant, just that they are quiet and private in their way of living. When a person undergoes such a death, we should remember that they were a member of our community and this should be acknowledged.

It may be that the local authority will manage the process that takes place after the person has died, such as registering the death and organising the funeral. The funeral needs to acknowledge the person as a member of their community, even if little is known about them when they were alive.

Project outputs

Peer reviewed journal articles:

Turner, N. and Caswell, G. (2020) ‘Moral ambiguity in media reports of dying alone’, Mortality, 25(3), 266-281. DOI: 10.1080/13576275.2019.1657388

Caswell, G. and Turner, N. (2020) ‘Ethical challenges in researching and telling the stories of recently deceased people’, Research Ethics. https://doi.org/10.1177/1747016120952503

Turner, N. and Caswell, G. (2020) ‘A relative absence: exploring professional experiences of funerals without mourners’, Omega – Journal of Death and Dying. https://journals.sagepub.com/doi/full/10.1177/0030222820959960

Other:

Caswell, G. and Turner, N. (2020) ‘Researching lone deaths and public health funerals’, Institute of Cemetery and Crematorium Management Journal, 88(3), 19-20.

Caswell, G. (2020) ‘‘A stark and lonely death’: Representations of dying alone in popular culture’, in Teodorescu, A. and Jacobsen, M.H. (eds). Death in contemporary popular culture. London: Routledge. Pp. 38-50.

Invited talks:

Caswell, G. ‘Compassion to the end of life and beyond’. A life lived celebration. 11/5/2024, St. Martin’s Church, Birmingham. Organised by Birmingham City Council.

Caswell, G. ‘Funerals for people who have no family’. Public Health Act Funerals Conference 2022. 8/9/2022, hybrid, London/online. Organised by Public Health Funerals Information Service.

‘Exploring the social management of lone deaths’: Public health funerals workshop, online 7/7/2021, organised by Mike White, Birmingham City Council.

Caswell, G. ‘‘Just an ordinary guy’: Tales of living and dying alone’, Finders International Public Health Funeral conference, web-based launch 28/5/2020, https://www.publichealthfunerals.org/e-conferences/phfis-e-conference-28th-may-2020/

Caswell, G. “He just lived a very quiet life’: an alternative reading of dying alone’, Finders International Coroners conference, web-based launch 24/9/2020, https://www.findersinternational.co.uk/past-events/coroners-e-conference-24th-september-2020/

Caswell, G. ‘Exploring lone deaths: findings from a research study’, Finders International Public Health Funeral conference, web-based launch 19/11/2020  https://www.publichealthfunerals.org/e-conferences/pha-funerals-e-conference-19th-november-2020-1030am/

Caswell, G. ‘Exploring the social management of lone deaths: study findings and some challenges along the way’. University of Nottingham, School of Health Sciences, Research Community of Practice seminar, online 25/11/2020

Caswell, G. ‘A police officer’s tale: an ethnographic study of documents’, PhD research Saturday, 18th May 2019, School of Health Sciences, University of Nottingham

Podcast:

January 2021: interview with James Abbott for the Art of Dying Well podcast on ‘End of Life Accompaniment and Lone Deaths’: https://www.artofdyingwell.org/podcasts/

Video:

Caswell, G. (2022): ‘Ethical challenges in researching and telling the stories of recently deceased people’, recording for Sage video Research Ethics Case Study. https://dx.doi.org/10.4135/9781529791983