Older persons' thoughts about death and dying and their experiences of care in end-of-life: a qualitative study

Johanna Tjernberg, Christina Bökberg, Johanna Tjernberg, Christina Bökberg

Abstract

Background: Few studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons' perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life.

Aim: To explore thoughts about death and dying and experiences of care in end-of-life among older persons living in nursing homes.

Methods: This study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4).

Results: The analysis resulted in the identification of three main thematic categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. The older persons did not fear death itself but had some worries about dying. Spending the last stage of life at a nursing home contributed to different thoughts and feelings among the older persons. With a few exceptions, older persons characterized life at the nursing home as boring and felt they were surrounded by people who did not belong there.

Conclusions: This study indicates a need for older persons to talk about death, dying and end-life issues. Furthermore, this study highlighted that the co-residence of cognitively healthy persons and persons with dementia in the same ward adversely affected cognitively healthy persons. This situation resulted in there being not enough time to both handle the care needs of persons with dementia and have the conversations that cognitively healthy persons desired, such as conversations about thoughts about existence, that could have improved their quality of life.

Trial registration: NCT02708498 Date of registration 16 February 2016.

Keywords: Death; Dying; End-of-life care; Nursing homes; Older persons; Palliative care.

Conflict of interest statement

The authors declare that they have no competing interests.

References

    1. Global elderly care in crisis. Lancet, 2014, 383:927. doi: 10.1016/S0140-6736(14)60463-3.
    1. Davies E, Higginson IJ. Better palliative care for older people. Copenhagen: World Health Organization Regional Office for Europe; 2004.
    1. Pivodic L, Pardon K, Morin L, et al. Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries. J Epidemiol Community Health. 2016;70:17–24. doi: 10.1136/jech-2014-205365.
    1. National Board of Health and Welfare . Death cause statistics 2018. Stockholm: National Board of Health and Welfare; 2019.
    1. Håkanson C, Öhlén J, Morin L, Cohen J. A population-level study of place of death and associated factors in Sweden. Scand J Public Health. 2015;43(7):744–751. doi: 10.1177/1403494815595774.
    1. Ternestedt B, Franklin LL. Ways of relating to death: views of older people resident in nursing homes. Int J Palliat Nurs. 2006;12(7):334–340. doi: 10.12968/ijpn.2006.12.7.21611.
    1. Österlind J, Ternestedt BM, Hansebo G, Hellström I. Feeling lonely in an unfamiliar place: Older people’s experiences of life close to death in a nursing home. Int J Older People Nurs. 2017;12(1). 10.1111/opn.12129.
    1. Rahm HI. Death and dying from old people’s point of view: a literature review. Aging Clin Exp Res. 2004;16(2):87–103. doi: 10.1007/BF03324537.
    1. Rahm Hallberg I. Palliative care as a framework for older people’s long-term care. Int J Palliat Nurs. 2006;12(5):224–229. doi: 10.12968/ijpn.2006.12.5.21175.
    1. Beck I, Törnquist A, Broström L, Edberg AK. Having to focus on doing rather than being: nursing assistants’ experience of palliative care in municipal residential care settings. Int J Nurs Stud. 2012;49(4):455–464. doi: 10.1016/j.ijnurstu.2011.10.016.
    1. Towsley GL, Hirschman KB, Madden C. Conversations about end of life: perspectives of nursing home residents, family and staff. J Palliat Med. 2015;18(5):421–428. doi: 10.1089/jpm.2014.0316.
    1. Alftberg Å, Ahlström G, Nilsen P, Behm L, Sandgren A, Benzein E, et al. Conversations about death and dying with older people: an ethnographic study in nursing homes. Healthcare (Basel). 2018;6(2). 10.3390/healthcare6020063.
    1. Sweden’s municipalities and county councils . Fakta om äldreomsorgen i ljuset av coronaepidemin. (Facts about care for the elderly in light of the corona epidemic) Stockholm: Sveriges kommunder och landsting; 2020.
    1. Schon P, Lagergren M, Karleholt I. Rapid decrease in length of stay in institutional care for older people in Sweden between 2006 and 2012: results from a population-based study. Health Soc Care Community. 2016;24(5):631–638. doi: 10.1111/hsc.12237.
    1. Smedbäck J, Öhlén J, Årestedt K, Alvariza A, Fürst CJ, Håkanson C. Palliative care during the final week of life of older people in nursing homes: a register-based study. Palliat Support Care. 2017;15(4):417–424. doi: 10.1017/S1478951516000948.
    1. Froggatt K, Sheila P, Morbey H, Edwards M, Finne-Soveri H, Gambassi G, et al. Palliative care development in European care homes and nursing homes: application of a typology of implementation. J Am Med Dir Assoc. 2017;18(6):550.e7–550.e14. doi: 10.1016/j.jamda.2017.02.016.
    1. Goddard C, Stewart F, Thompson G, Hall S. Providing end-of-life care in care homes for older people: a qualitative study on the views of care home staff and community nurses. J Appl Gerontol. 2013;32(1):76–95. doi: 10.1177/0733464811405047.
    1. Åvik Persson H, Sandgren A, Fürst CJ, Ahlström G, Behm L. Early and late signs that precede dying among older persons in nursing homes: the multidisciplinary team’s perspective. BMC Geriatr. 2018;18(1). 10.1186/s12877-018-0825-0.
    1. Fleming J, Farquhar M, Brayne C, Barclay S. Death and the oldest old: attitudes and preferences for end-of-life care - qualitative research within a population-based cohort study. PLoS One. 2016;11(4). 10.1371/journal.pone.0150686.
    1. Lloyd-Williams M, Kennedy V, Sixsmith A, Sixsmith J. The end of life: a qualitative study of the perceptions of people over the age of 80 on issues surrounding death and dying. J Pain Symptom Manag. 2007;34(1):60–66. doi: 10.1016/j.jpainsymman.2006.09.028.
    1. Seiger Cronfalk B, Ternestedt BM, Franklin Larsson LL, Henriksen E, Norberg A, Österlind J. Utilization of palliative care principles in nursing home care: educational interventions. Palliat Support Care. 2015;13(6):1745–1753. doi: 10.1017/S1478951515000668.
    1. Hall S, Petkova H, Tsouros AD, Costantini M, Higginson IJ. Palliative care for older people: better practices. Copenhagen: World Health Organization Regional Office for Europe; 2004.
    1. Ahlström G, Nilsen P, Benzein E, Behm L, Wallerstedt B, Persson M, Sandgren A. Implementation of knowledge-based palliative care in nursing homes and pre-post post evaluation by cross-over design: a study protocol. BMC Palliat Care. 2018;17(52). 10.1186/s12904-018-0308-2.
    1. National Board of Health and Welfare . Lägesrapport 2020 Vård och omsorg om äldre. (Progress report 2020 Care for the elderly) Stockholm: National Board of Health and Welfare; 2020.
    1. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–112. doi: 10.1016/j.nedt.2003.10.001.
    1. Bradshaw SA, Playford ED, Riazi A. Living well in care homes: a systematic review of qualitative studies. Age Ageing. 2012;41(4):429–440. doi: 10.1093/ageing/afs069.
    1. Riis Iden KR, Ruths S, Hjørleifsson S. Residents’ perceptions of their own sadness: a qualitative study in Norweigan nursing homes. BMC Geriatr. 2015;15(21). 10.1186/s12877-015-0019-y.
    1. Findlay C, Lloyd A, Finucane AM. Experience of emotion in frail older people towards the end of life: a secondary data analysis. Br J Community Nurs. 2017;22(12):586–592. doi: 10.12968/bjcn.2017.22.12.586.
    1. Sjöberg M, Beck I, Rasmussen BH, Edberg AK. Being disconnected from life: meanings of existential loneliness as narrated by frail older people. Aging Ment Health. 2018;22(10):1357–1364. doi: 10.1080/13607863.2017.1348481.
    1. Vaughn L, Corbin AL, Goveas JS. Depression and frailty in later life: a systematic review. Clin Interv Aging. 2015;10:1947–1958. doi: 10.2147/CIA.S69632.
    1. Polit DF, Beck CT. Essentials of nursing research: appraising evidence for nursing practice. 8. Philadelphia: Wolters Kluwer; 2014.
    1. World Medical Association . WMA declaration of Helsinki – ethical principles for medical research involving human subjects. Fortaleza: World Medical Association; 2013.
    1. SFS 2003:460 . Lag om etikprövning av forskning som avser människor. (Act concerning the ethical review of research involving humans) Stockholm: Ministry of education and research; 2003.
    1. European Data Protection Board . The general data protection regulation GDPR. 2018.

Source: PubMed

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