Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns and Care Preferences and Finnish Care Policy’s Emphasis on Care at Home
- 88 Downloads
In recent years, Finnish care policy has emphasised that older people should remain at home for as long as possible. Since the final stages of life and death will theoretically happen more often in the home, it is important to identify people’s experiences and needs regarding end-of-life care and dying. The aim of this article is to provide knowledge on these questions from the perspective of the Northern Finnish people (N = 294). Statistical analysis was used with data gathered from a survey of a random sample. People’s wishes for their end-of-life place and carers and their end-of-life plans and concerns, are analysed as part of a social and cultural construction of dying and end-of-life care. The results show that people do have end-of-life concerns and that they consider end-of-life planning important but that few preparations are actually made. In many instances, home is regarded as the best place for end-of-life care and dying, but care institutions are also regarded positively. Reliance on professional care is very strong, even though people hope to receive care from family members as well. The results are discussed in the light of Finnish care policy and end-of-life culture.
KeywordsAdvance care planning End-of-life care Dying
- Aaltonen, M. (2015). Patterns of care in the last two years of life. Care transitions and places of death of old people (Acta electronica Universitatis Tamperensis 1588). Tampere: Tampere University Press.Google Scholar
- Azeem, F., & Naz, M. A. (2015). Resilience, death anxiety, and depression among institutionalized and noninstitutionalized elderly. Pakistan Journal of Psychological Research, 30(1), 111–130.Google Scholar
- Beccaro, M., Costantini, M., Rossi, P. G., Miccinesi, G., Grimaldi, M., & Bruzzi, P. (2006). Actual and preferred place of death of cancer patients. Results from the Italian survey of the dying of cancer (ISDOC). Journal of Epidemiology and Community Health, 60, 412–416. https://doi.org/10.1136/jech.2005.043646.CrossRefGoogle Scholar
- Choi, J., Miyashita, M., Hirai, K., Sato, K., Morita, T., Tsuneto, S., & Shima, Y. (2010). Preference of place for end-of-life cancer care and death among bereaved Japanese families who experienced home hospice care and death of a loved one. Supportive Care in Cancer, 18, 1445–1453. https://doi.org/10.1007/s00520-009-0767-3.CrossRefGoogle Scholar
- Cicirelli, V. G. (2006). Older adult’s views on death. New York: Springer.Google Scholar
- Donovan, R., Williams, A., Stajduhar, K., Brazil, K., & Marshall, D. (2011). The influence of culture on home-based family caregiving at end-of-life: A case study of Dutch reformed family care givers in Ontario, Canada. Social Science & Medicine, 72, 338–346. https://doi.org/10.1016/j.socscimed.2010.10.010.CrossRefGoogle Scholar
- Elias, N. (1985). The loneliness of dying (Trans. Jephcott E.) New York: Blackwell.Google Scholar
- Fleming, J., Farquhar, M., Cambridge City over-75s Cohort (CC75C) study collaboration, Brayne, C., 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. doi: https://doi.org/10.1371/journal.pone.0150686.CrossRefGoogle Scholar
- French, C., Greenauer, N., & Mello, C. (2017). A multifactorial approach to predicting death anxiety: Assessing the role of religiosity, susceptibility to mortality cues, and individual differences. Journal of Social Work in End-of-Life & Palliative Care, 13(2–3), 151–172. https://doi.org/10.1080/15524256.2017.1331181.CrossRefGoogle Scholar
- Genet, N., Boerma, W. G. W., Kringos, D. S., Bouman, A., Francke, A. L, & Fagerström C. et al. (2011). Home care in Europe: A systematic literature review. BMC Health Service Research, 30,11, 207. https://doi.org/10.1186/1472-6963-11-207.
- Gomes, B., Calanzani, N., Gysels, M., Hall, S., & Higginson, I. J. (2013). Heterogeneity and changes in preferences for dying at home: A systematic review. BMC Palliative Care. https://doi.org/10.1186/1472-684X-12-7.
- Heikkinen, A. (2017). Kuoleman kohtaamisen paikka. Master’s thesis. Social work. Rovaniemi: University of Lapland.Google Scholar
- Houttekier, D., Cohen, J., Surkyn, J., & Deliens, L. (2011). Study of recent and future trends in place of death in Belgium using death certificate data: A shift from hospitals to care homes. BMC Public Health. https://doi.org/10.1186/1471-2458-11-228.
- Kastenbaum, R. J. (1998). Death, society, and human experience. New York: Routledge.Google Scholar
- Kübler-Ross, E. (1969). On death and dying. New York: Macmillan.Google Scholar
- Leishman, J. L. (2009a). Introduction. In J. L. Leishman (Ed.), Perspectives on death and dying (pp. 1–13). Keswick: M&K Publishing.Google Scholar
- Leishman, J. L. (2009b). Death, social change and lifestyle in UK. In J. L. Leishman (Ed.), Perspectives on death and dying (pp. 65–79). Keswick: M&K Publishing.Google Scholar
- Miettinen, S. (2006). Eron aika. Tyttärien kertomuksia ikääntyneen vanhemman kuolemasta. Yhteiskuntapolitiikan laitoksen tutkimuksia 4. Helsinki: Yliopistopaino.Google Scholar
- Neimeyer, R. A., Currier, J. M., Coleman, R., Tomer, A., & Samuel, E. (2011). Confronting suffering and death at the end of life: The impact of religiosity, psychosocial factors, and life regret among hospice patients. Death Studies, 35, 777–800. https://doi.org/10.1080/07481187.2011.583200.CrossRefGoogle Scholar
- Sanjo, M., Miyashita, M., Morita, T., Hirai, K., Kawa, M., Akechi, T., et al. (2007). Preferences regarding end-of-life cancer care and associations with good-death concepts: a population-based survey in Japan. Annals of Oncology, 18, 1539–1547. https://doi.org/10.1093/annonc/mdm199.CrossRefGoogle Scholar
- Sepperd, S., Wee, B., & Strauss, S. E. (2011). Hospital at home: Home-based end of life care. The Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD009231.
- Sharp, T., Moran, E., Kuhn, I., & Barclay, S. (2013). Do the elderly have a voice? Advance care planning discussions with frail and older individuals: A systematic literature review and narrative synthesis. The British Journal of General Practice, 63, e657–e668. https://doi.org/10.3399/bjgp13X673667.CrossRefGoogle Scholar
- Simon, J., Porterfield, P., & Bouchal, S. R. (2015). ‘Not yet’ and ‘just ask’: Barriers and facilitators to advance care planning—A qualitative descriptive study of the perspectives of seriously ill, older patients and their families. BMJ Supportive & Palliative Care, 5, 54–62. https://doi.org/10.1136/bmjspcare-2013-000487.CrossRefGoogle Scholar
- Sudore, R. L., & Fried, T. R. (2010). Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Annals of Internal Medicine, 153, 256–261. https://doi.org/10.7326/0003-4819-153-4-201008170-00008.CrossRefGoogle Scholar