Hostname: page-component-848d4c4894-pjpqr Total loading time: 0 Render date: 2024-06-14T22:13:59.358Z Has data issue: false hasContentIssue false

What socio-cultural, emotional and relational factors shape older people's experiences of death and dying in residential aged care? A scoping review

Published online by Cambridge University Press:  07 March 2024

Georgia van Toorn*
Affiliation:
School of Social Sciences, University of New South Wales, Kensington, NSW, Australia
Emma Kirby
Affiliation:
School of Social Sciences, University of New South Wales, Kensington, NSW, Australia
Myra Hamilton
Affiliation:
University of Sydney Business School, University of Sydney, Darlington, NSW, Australia
John MacArtney
Affiliation:
Warwick Medical School, Health Sciences, University of Warwick, Coventry, UK
*
Corresponding author: Email: g.vantoorn@unsw.edu.au

Abstract

Research internationally has revealed a range of medical and health-related issues that shape care at the end of life for people living in residential aged care facilities (RACFs), their families and the staff who care for them. Yet, less is known about the lived experiences of residents, and the broader socio-cultural, emotional and relational factors that shape experiences of dying within such settings. In this article, we present findings from a scoping review designed to establish what is known about the lived experience of residents nearing the end of life. In doing so, we identify research gaps and move towards an agenda for future research. Five electronic databases were used to identify empirical research articles investigating end-of-life experiences from the perspective of older people living in RACFs, from which we selected 22 papers for thematic analysis. Our analysis highlighted three key themes: connections and closeness; place and the end of life; and temporality, care and the anticipation of dying. A majority of the articles (15) highlighted the importance of social connectedness with staff, co-residents and family in enabling people to die with dignity and a sense of belonging in residential settings. The physical layout and living arrangements in RACFs were found to affect the ways in which residents relate within the space, especially during and after the death of a resident. Anticipatory fears of dying were oriented towards the context of illness and care, and its management within the RACF, rather than death itself. Our analysis highlights considerable evidence that ‘good deaths’ are embedded in experiences of socio-emotional wellbeing, connectedness and relationality. However, much of the extant research analysed is exploratory, pointing to the need for further social scientific study of the social and cultural embeddedness of end-of-life experiences with residential aged care.

Type
Article
Copyright
Copyright © The Author(s), 2024. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abbey, J, Froggatt, KA, Parker, D and Abbey, B (2006) Palliative care in long-term care: a system in change. International Journal of Older People Nursing 1, 5663.CrossRefGoogle ScholarPubMed
Allen, S, Chapman, Y, O'Connor, M and Francis, K (2008) The evolution of palliative care and the relevance to residential aged care: understanding the past to inform the future. Collegian 15, 165171.Google Scholar
Almack, K, Seymour, J and Bellamy, G (2010) Exploring the impact of sexual orientation on experiences and concerns about end of life care and on bereavement for lesbian, gay and bisexual older people. Sociology 44, 908924.Google Scholar
American Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association, Last Acts Partnership, and National Hospice and Palliative Care Organization (2004) National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for quality palliative care, executive summary. Journal of Palliative Medicine 7, 611627.Google Scholar
Arksey, H and O'Malley, L (2005) Scoping studies: towards a methodological framework. International Journal of Social Research Methodology 8, 1932.Google Scholar
Baines, D, Dulhunty, A and Charlesworth, S (2022) Relationship-based care work, austerity and aged care. Work, Employment and Society 36, 139155.CrossRefGoogle Scholar
Banerjee, A and Rewegan, A (2016) Intensifying relational care: the challenge of dying in long-term residential care. Journal of Canadian Studies/Revue d’études canadiennes 50, 396421.Google Scholar
Bell, S, Aggleton, P, Ward, J and Maher, L (2017) Sexual agency, risk and vulnerability: a scoping review of young indigenous Australians’ sexual health. Journal of Youth Studies 20, 12081224.Google Scholar
Bramer, WM, Rethlefsen, ML, Kleijnen, J and Franco, OH (2017) Optimal database combinations for literature searches in systematic reviews: a prospective exploratory study. Systematic Reviews 6, 245.Google Scholar
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77101.Google Scholar
Braun, V and Clarke, V (2019) Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health 11, 589597.Google Scholar
Braun, V and Clarke, V (2021) One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology 18, 328352.CrossRefGoogle Scholar
Broad, J, Gott, M, Kim, H, Boyd, M, Chen, H and Connolly, MJ (2013) Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics. International Journal of Public Health 58, 257267.Google Scholar
Cagle, JG, Unroe, KT, Bunting, M, Bernard, BL and Miller, SC (2017) Caring for dying patients in the nursing home: voices from frontline nursing home staff. Journal of Pain and Symptom Management 53, 198207.Google Scholar
Carlson, AL (2007) Death in the nursing home: resident, family, and staff perspectives. Journal of Gerontology Nursing 33, 3241.Google Scholar
Cartwright, JC (2002) Nursing homes and assisted living facilities as places for dying. Annual Review of Nursing Research 20, 231264.CrossRefGoogle ScholarPubMed
Chan, J and Kayser-Jones, J (2005) The experience of dying for Chinese nursing home residents: cultural considerations. Journal of Gerontology Nursing 31, 2632.CrossRefGoogle ScholarPubMed
Critical Appraisal Skills Programme (2018) CASP qualitative checklist. https://casp-uk.net/wp-content/uploads/2018/01/CASPQualitative-Checklist-2018.pdf (accessed 14 February 2020).Google Scholar
Davis-Berman, J (2011) Conversations about death: talking to residents in independent, assisted, and long-term care settings. Journal of Applied Gerontology 30, 353369.Google Scholar
Department of Health and Ageing (2004) Guidelines for a Palliative Approach in Residential Aged Care: The National Palliative Care Program. Canberra: Department of Communications, Information Technology and the Arts, Australian Government.Google Scholar
Djivre, SE, Levin, E, Schinke, RJ and Porter, E (2012) Five residents speak: the meaning of living with dying in a long-term care home. Death Studies 36, 487518.Google Scholar
Dwyer, LL, Nordenfelt, L and Ternestedt, BM (2008) Three nursing home residents speak about meaning at the end of life. Nursing Ethics 15, 97109.CrossRefGoogle ScholarPubMed
Ellis, J, Winslow, M and Noble, B (2016) Social policy and care of older people at the end of life. In Foster, L and Woodthorpe, K (eds). Death and Social Policy in Challenging Times. London: Palgrave Macmillan, pp. 1734.Google Scholar
Feder, S, Smith, D, Griffin, H, Shreve, ST, Kinder, D, Kutney-Lee, A and Ersek, M (2021) ‘Why couldn't I go in to see him?’ Bereaved families’ perceptions of end-of-life communication during COVID-19. Journal of the American Geriatrics Society 69, 587592.Google Scholar
Fleming, J, Farquhar, M, Cambridge City Over-75s Cohort (CC75C) Study Collaboration, Brayne, C and Barclay, S (2016) Death and the oldest old: attitudes and preferences for end-of-life care – qualitative research within a population-based cohort study. PLOS One 11, e0150686.CrossRefGoogle ScholarPubMed
Forbes-Thompson, S and Gessert, CE (2005) End of life in nursing homes: connections between structure, process, and outcomes. Journal of Palliative Medicine 8, 545555.Google Scholar
Fosse, A, Schaufel, MA, Ruths, S and Malterud, K (2014) End-of-life expectations and experiences among nursing home patients and their relatives – a synthesis of qualitative studies. Patient Education and Counseling 97, 39.CrossRefGoogle ScholarPubMed
Franklin, LL, Ternestedt, BM and Nordenfelt, L (2006) Views on dignity of elderly nursing home residents. Nursing Ethics 13, 130146.CrossRefGoogle ScholarPubMed
Frey, R and Balmer, D (2022) Resident and family spirituality in New Zealand residential aged care: an exploration. Journal of Religion, Spirituality & Aging 34, 121142.Google Scholar
Froggatt, KA (2001) Palliative care and nursing homes: where next? Palliative Medicine 15, 4248.Google Scholar
Froggatt, KA, Wilson, D, Justice, C, Macadam, M, Leibovici, K, Kinch, J, Thomas, R and Choi, J (2006) End-of-life care in long-term care settings for older people: a literature review. International Journal of Older People Nursing 1, 4550.CrossRefGoogle ScholarPubMed
Gjerberg, E, Lillemoen, L, Førde, R and Pedersen, R (2015) End-of-life care communications and shared decision-making in Norwegian nursing homes – experiences and perspectives of patients and relatives. BMC Geriatrics 15, 103.Google Scholar
Gonella, S, Basso, I, De Marinis, MG, Campagna, S and Di Giulio, P (2019) Good end-of-life care in nursing home according to the family carers’ perspective: a systematic review of qualitative findings. Palliative Medicine 33, 589606.CrossRefGoogle Scholar
Goodman, C, Amador, S, Elmore, N, Machen, I and Mathie, E (2013) Preferences and priorities for ongoing and end-of-life care: a qualitative study of older people with dementia resident in care homes. International Journal of Nursing Studies 50, 16391647.Google Scholar
Goodridge, D, Bond, JB Jr, Cameron, C and McKean, E (2005) End-of-life care in a nursing home: a study of family, nurse and healthcare aide perspectives. International Journal of Palliative Nursing 11, 226232.Google Scholar
Greenwood, N, Menzies-Gow, E, Nilsson, D, Aubrey, D, Emery, CL and Richardson, A (2018) Experiences of older people dying in nursing homes: a narrative systematic review of qualitative studies. BMJ Open 8, e021285.Google Scholar
Hack, E, Hayes, B, Radcliffe, N, Monda, S and Yates, P (2022) COVID-19 pandemic: end-of-life experience in Australian residential aged care facilities. International Medicine Journal 52, 386395.Google Scholar
Hanna, JR, Rapa, E, Dalton, LJ, Hughes, R, McGlinchey, T, Bennett, KM, Donnellan, WJ, Mason, SR and Mayland, CR (2021) A qualitative study of bereaved relatives’ end of life experiences during the COVID-19 pandemic. Palliative Medicine 35, 843–851. https://doi.org/10.1177/02692163211004210.Google Scholar
Honinx, E, Van den Block, L, Piers, R, Onwuteaka-Philipsen, BD, Payne, S, Szczerbińska, K, Gambassi, G, Kylänen, M, Deliens, L and Smets, T and PACE (2021) Large differences in the organization of palliative care in nursing homes in six European countries: findings from the PACE cross-sectional study. BMC Palliative Care 20, 131.Google Scholar
Hussain, R, Wark, S, Müller, A, Ryan, P and Parmenter, T (2019) Personal relationships during end-of-life care: support staff views of issues for individuals with intellectual disability. Research in Developmental Disabilities 87, 2130.Google Scholar
Johnstone, MJ, Hutchinson, AM, Rawson, H and Redley, B (2016) Assuaging death anxiety in older overseas-born Australians of culturally and linguistically diverse backgrounds hospitalised for end-of-life care. Contemporary Nurse 52, 269285.CrossRefGoogle ScholarPubMed
Johnstone, M-J, Rawson, H, Hutchinson, AM and Redley, B (2018) Fostering trusting relationships with older immigrants hospitalised for end-of-life care. Nursing Ethics 25, 760772.CrossRefGoogle ScholarPubMed
Kayser-Jones, J (2002) The experience of dying: an ethnographic nursing home study. The Gerontologist 42, 1119.CrossRefGoogle ScholarPubMed
Khadka, J, Lang, C, Ratcliffe, J, Corlis, M, Wesselingh, S, Whitehad, C and Inacio, M (2019) Trends in the utilisation of aged care services in Australia, 2008–2016. BMC Geriatrics 19, 213.CrossRefGoogle ScholarPubMed
Kinley, J, Froggatt, K and Bennett, MI (2013) The effect of policy on end-of-life care practice within nursing care homes: a systematic review. Palliative Medicine 27, 209220.Google Scholar
Kortes-Miller, K, Boulé, J, Wilson, K and Stinchcombe, A (2018) Dying in long-term care: perspectives from sexual and gender minority older adults about their fears and hopes for end of life. Journal of Social Work in End-of-life & Palliative Care 14, 209224.CrossRefGoogle ScholarPubMed
Kristjanson, L (2006) A palliative approach to spirituality in residential aged care. Journal of Religion, Spirituality & Aging 18, 189205.Google Scholar
Lee, J, Cheng, J, Au, KM, Yeung, F, Leung, MT, Ng, J, Hui, E, Lo, R and Woo, J (2013) Improving the quality of end-of-life care in long-term care institutions. Journal of Palliative Medicine 16, 12681274.Google Scholar
Leontowitsch, M, Oswald, F, Schall, A and Pantel, J (2023) Doing time in care homes: insights into the experiences of care home residents in Germany during the early phase of the COVID-19 pandemic. Ageing & Society 43, 11841202.CrossRefGoogle Scholar
Levac, D, Colquhoun, H and O'Brien, K (2010) Scoping studies: advancing the methodology. Implementation Science 5, 69.Google Scholar
Livingston, G, Lewis-Holmes, E, Pitfield, C, Manela, M, Chan, D, Constant, E, Jacobs, H, Wills, G, Carson, N and Morris, J (2013) Improving the end-of-life for people with dementia living in a care home: an intervention study. International Psychogeriatrics 25, 18491858.Google Scholar
Mathie, E, Goodman, C, Crang, C, Froggatt, K, Iliffe, S, Manthorpe, J and Barclay, S (2012) An uncertain future: the unchanging views of care home residents about living and dying. Palliative Medicine 26, 734743.Google Scholar
Millington-Sanders, C and Noble, B (2018) New UK general practice core standards for advanced serious illness and end of life care. British Journal of General Practice 68, 114115.Google Scholar
Molloy, U and Phelan, A (2022) Living, loving and letting go-navigating the relational within palliative care of older people in long-term care facilities: An action research study. International Journal of Older People Nursing 17, e12424. https://doi.org/10.1111/opn.12424.Google Scholar
Munn, J and Zimmerman, S (2006) A good death for residents of long-term care. Journal of Social Work in End-of-life & Palliative Care 2, 4559.Google Scholar
Munn, JC, Dobbs, D, Meier, A, Williams, CS, Biola, H and Zimmerman, S (2008) The end-of-life experience in long-term care: five themes identified from focus groups with residents, family members, and staff. The Gerontologist 48, 485494.CrossRefGoogle ScholarPubMed
National Health and Medical Research Council (NHMRC) (2006) Guidelines for a Palliative Approach in Residential Aged Care. Australian Government. Available at https://agedcare.royalcommission.gov.au/system/files/2020-06/RCD.9999.0049.0016.pdf.Google Scholar
National Health Service (2010) National End of Life Care Programme: The Route to Success in End of Life Care – Achieving Quality in Care Homes. Available at https://www.england.nhs.uk/improvement-hub/wp-content/uploads/sites/44/2017/11/End-of-Life-Care-Route-to-Success-care-homes.pdf.Google Scholar
O'Connor, M and Pearson, A (2004) Ageing in place–dying in place: competing discourses for care of the dying in aged care policy. Australian Journal of Advanced Nursing 22, 3238.Google Scholar
Österlind, J, Ternestedt, BM, Hansebo, G and Hellström, I (2017) Feeling lonely in an unfamiliar place: older people's experiences of life close to death in a nursing home. International Journal of Older People Nursing 12, e12129.CrossRefGoogle Scholar
Pahl, R and Spencer, L (2004) Personal communities: not simply families of ‘fate’ or ‘choice’. Current Sociology 52, 199221.Google Scholar
Parker, D (2011) Residential aged care facilities: places for living and dying. Cultural Studies Review 17, 3151.Google Scholar
Parker, D, Grbich, C, Brown, M, Maddocks, I, Willis, E and Roe, P (2005) A palliative approach or specialist palliative care? What happens in aged care facilities for residents with a noncancer diagnosis. Journal of Palliative Care 21(2), 8087.Google Scholar
Parker Oliver, D, Porock, D and Zweig, S (2005) End-of-life care in U.S. nursing homes: a review of the evidence. Journal of the American Medical Directors Association 6, S21S30.Google Scholar
Parks, JA and Howard, M (2021) Dying well in nursing homes during COVID-19 and beyond: the need for a relational and familial ethic. Bioethics 35, 589595.Google Scholar
Penny, A (2007) International trends in aged care. Asia Pacific Journal of Health Management 2, 2631.Google Scholar
Phillips, JL, Davidson, PM, Jackson, D and Kristjanson, LJ (2008) Multi-faceted palliative care intervention: aged care nurses’ and care assistants’ perceptions and experiences. Journal of Advanced Nursing 62, 216227.Google Scholar
Pleschberger, S (2007) Dignity and the challenge of dying in nursing homes: the residents’ view. Age and Ageing 36, 197202.Google Scholar
Reher, D (2015) Baby booms, busts, and population ageing in the developed world. Population Studies 69, S57S68.Google Scholar
Stone, T (2009) Understanding consumption within a care home: an interpretation of George's experiences of life and death. Journal of Consumer Behaviour 8, 166178.Google Scholar
Sussman, T, Kaasalainen, S, Mintzberg, S, Sinclair, S, Young, L, Ploeg, J, Bourgeois-Guérin, V, Thompson, G, Venturato, L, Earl, M, Strachan, P, You, JJ, Bonifas, R and McKee, M (2017) Broadening end-of-life comfort to improve palliative care practices in long term care. Canadian Journal on Aging/La revue canadienne du vieillissement 36, 306317.Google Scholar
Tan, HM, O'Connor, MM, Howard, T, Workman, B and O'Connor, DW (2013) Responding to the death of a resident in aged care facilities: perspectives of staff and residents. Geriatric Nursing 34, 4146.Google Scholar
Ternestedt, BM and Franklin, LL (2006) Ways of relating to death: views of older people resident in nursing homes. International Journal of Palliative Nursing 12, 334340.CrossRefGoogle ScholarPubMed
Tishelman, C, Lindqvist, O, Hajdarevic, S, Rasmussen, BH and Goliath, I (2016) Beyond the visual and verbal: using participant-produced photographs in research on the surroundings for care at the end-of-life. Social Science & Medicine 168, 120129.Google Scholar
Tjernberg, J and Bökberg, C (2020) Older persons’ thoughts about death and dying and their experiences of care in end-of-life: a qualitative study. BMC Nursing 19, 123. https://doi.org/10.1186/s12912-020-00514-x.Google Scholar
Tricco, AC, Lillie, E, Zarin, W, O'Brien, KK, Colquhoun, H, Levac, D, Moher, D, Peters, MDJ, Horsley, T, Weeks, L, Hempel, S, Akl, EA, Chang, C, McGowan, J, Stewart, L, Hartling, L, Aldcroft, A, Wilson, MG, Garritty, C, Lewin, S, Godfrey, CM, MacDonald, MT, Langlois, EV, Soares-Weiser, K, Moriarty, J, Clifford, T, Tunçalp, Ö and Straus, SE (2018) PRISMA extension for scoping reviews (PRISMAScR): checklist and explanation. Annals of Internal Medicine 169, 467473.Google Scholar
Unroe, KT, Cagle, JG, Dennis, ME, Lane, KA, Callahan, CM and Miller, SC (2014) Hospice in the nursing home: perspectives of front line nursing home staff. Journal of the American Medical Directors Association 15, 881884.CrossRefGoogle ScholarPubMed
van den Block, L, Honinx, E, Pivodic, L, Miranda, R, Onwuteaka-Philipsen, BD, van Hout, H, Pasman, HRW, Oosterveld-Vlug, M, Ten Koppel, M, Piers, R, Van Den Noortgate, N, Engels, Y, Vernooij-Dassen, M, Hockley, J, Froggatt, K, Payne, S, Szczerbinska, K, Kylänen, M, Gambassi, G, Pautex, S, Bassal, C, Buysser, SD, Deliens, L, Smets, T and PACE Trial Group (2020) Evaluation of a palliative care program for nursing homes in 7 countries: the PACE cluster-randomized clinical trial. JAMA Internal Medicine 180, 233242.Google Scholar
Waldrop, DP and Kirkendall, AM (2009) Comfort measures: a qualitative study of nursing home-based end-of-life care. Journal of Palliative Medicine 12, 719724.Google Scholar
Wallace, CL, Adorno, G and Stewart, DB (2018) End-of-life care in nursing homes: a qualitative interpretive meta-synthesis. Journal of Palliative Medicine 21, 503512.Google Scholar
Wanless, D (2006) Securing Good Care for Older People, Taking a Long-term View. King's Fund. Available at https://www.kingsfund.org.uk/sites/default/files/field/field_publication_file/securing-good-care-for-older-people-wanless-2006.pdf.Google Scholar
Wardle, S and Bennett, C (2021) Spiritual inclusiveness at end-of-life for Punjabi Indians: experience with Regional Residential Aged Care Facilities. Journal of Religion, Spirituality & Aging 33, 155171.Google Scholar
Whitaker, A (2010) The body as existential midpoint – the aging and dying body of nursing home residents. Journal of Aging Studies 24, 96104.Google Scholar