Recognising a dying person: Death as a social process
Nursing homes, death, social death, recognition, ethnography, end-of-life care, dignified life
The literature shows that older persons with diseases other than cancer have difficulties in accessing end-of-life care [1,2], especially when they reside in long-term care . The main reasons for this inadequate situation are anticipated to be, the slow dying processes and difficulties to medically predict nearness of death of frail older persons.
Death is not just a physiological phenomenon diagnosed by clinicians. It is also a social process, the ways in which individuals and groups interact and establish social relationships interactions, especially when someone slowly approaches death in long-term care*. Therefore, the status of a dying person is negotiated in multiple everyday interactions and communication between older persons, their relatives, and social and health care professionals. Successful negotiations may result in adequate recognition of a dying person, whereas lack of negotiations may even result in frail older person’s social death. Social death is a process or state in which an individual ceases to be an active participant in the social words of others .
*In this study, ‘long-term care’ refers to any setting in which care is provided to older adults, on-site 24 hours a day by health and social care professionals.
In this research, death as a social process will be studied by conducting an ethnographical study to give voice to people living, visiting, and working in two long-term care facilities; one based in Finland and another based in the Republic of Ireland. Data collection in two countries enables the comparison and acknowledgment of the institutional, societal, and cultural differences in attitudes towards old age and dying. Participant observation, individual interviews, and focus group interviews will be conducted on-site to understand how the dying process is socially constructed.
The research concentrates on how death as a social process can be empirically studied, comprehensively theorised, and utilised to enable a more dignified life to the growing number of frail older people in our society.
The research will contribute to the international studies on social death, and for its part, add to the agenda of end-of-life care research and old age policies.
This research will inform society on the current conditions of dying in long-term care facilities and what is important for an older person’s dignity and well-being at the end of their life.
This research will help national and international palliative care communities to have a clearer voice in advocating appropriate end-of-life care as a human right. In addition, new knowledge on social death will help societies to establish new policies and practices to avoid social discrimination of older individuals and marginal groups.
Findings and research outputs will be made available here once available.
A peer reviewed paper produced from this research (May et al. 2020) was used by the Department of Health to inform palliative care expenditure profiles within the ‘Spending review 2021: Impact of demographic change on health expenditure 2022-2025’, July 2021 paper.
September 2021 – August 2024
Adjunct Professor Jari Pirhonen, Centre of Excellence in Research on Ageing and Care, University of Helsinki, Finland
Assistant Professor Ilkka Pietilä, Centre of Excellence in Research on Ageing and Care, University of Helsinki, Finland, Professor Sirpa Wrede, Centre of Excellence in Research on Ageing and Care, University of Helsinki, Finland and Professor Arto Laitinen, Faculty of Social Sciences, Tampere University, Finland.
Professor Virpi Timonen, School of Social Work and Social Policy, Trinity College Dublin, Republic of Ireland and All Ireland Institute of Hospice and Palliative Care, Island of Ireland
The research is funded by the Academy of Finland (grant number 341519).
The research is supported by the Centre of Excellence in Research on Ageing and Care.
The research is conducted in collaboration with research project “Approaching Social Death: Challenges in End-of-Life Care of Older Adults with Dementia, funded by the Kone Foundation (grant number 201901669).
Research outputs will be available from 2023.
Lolich, L. & Lynch, K. (2017). No choice without care: Palliative care as a relational matter, the case of Ireland. Soundings: An Interdisciplinary Journal, 100(4), 353–374.
Smets, T., Pivodic, L. Piers, R., Roeline, H., Pasman, W. et al. (2018). The palliative care knowledge of nursing home staff: The EU FP7 PACE cross-sectional survey in 322 nursing homes in six European countries. Palliative Medicine, 32(9), 1487–1497.
Ministry of Social Affairs and Health. (2019). State of palliative and terminal care in Finland. Regional survey and proposals to improve the quality and availability of care. Helsinki: Sosiaali- ja terveysministeriö.
Brannelly, T. (2011). Sustaining citizenship: People with dementia and the phenomenon of social death. Nursing Ethics, 18(5), 662–671.
Peer reviewed publication(s) related to this project authored by the principal investigator:
Lolich, L., Pirhonen, J., Turja. T. & Timonen, V. (2022). Technology in the home care of older people: views from Finland and Ireland. Journal of Cross-Cultural Gerontology. Published online 18 April 2022. https://doi.org/10.1007/s10823-022-09449-z [Accessed 26 April 2022]
Pirhonen, J. (2021). Pyhän Franciscuksen jalanjäljissä – Papit muistisairaiden ihmisten uskonnollisuuden tukena hoivakodeissa. Uskonnontutkija – Religionsforskaren, 10(4). https://doi.org/10.24291/uskonnontutkija.112942 [Note: only available in Finnish, Accessed 26 April 2022]
Pirhonen, J., Seppänen, M., Pietilä, I., Tuominen, K. & Jylhä, M. (2021). Vanhuus ja sosiaalinen kuolema – Sosiaalisen kuoleman käsitteistö vanhojen ihmisten haastattelupuheessa. [Old age and social death – How the concept of social death is negotiated by older adults]. Yhteiskuntapolitiikka, 86(1), 5–15. Open Access: http://urn.fi/URN:NBN:fi-fe202102164942 [Note: only available in Finnish]
Paananen, J., Rannikko, J. Harju, M. & Pirhonen, J. (2021). The impact of Covid-19-related distancing on the well-being of nursing home residents and their family members: a qualitative study. International Journal of Nursing Studies Advances. Available Online 31 May 2021. https://doi.org/10.1016/j.ijnsa.2021.100031
Laitinen, A. & Pirhonen, J. (2019). Ten forms of recognition and misrecognition in long-term care for older people. SATS – Northern European Journal of Philosophy, 20(1), 53–78. https://doi.org/10.1515/sats-2016-0017
Pirhonen, J. & Pietilä, I. (2015). Patient, resident, or person: Recognition and the continuity of self in long-term care for older people. Journal of Aging Studies, 35, 95–103. https://doi.org/10.1016/j.jaging.2015.05.004