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Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns and Care Preferences and Finnish Care Policy’s Emphasis on Care at Home

  • Marjo OutilaEmail author
  • Marjaana Seppänen
  • Pilvikki Lantela
  • Pekka Vasari
Chapter
Part of the International Perspectives on Aging book series (Int. Perspect. Aging, volume 22)

Abstract

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.

Keywords

Advance care planning End-of-life care Dying 

References

  1. 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
  2. Aoun, S. M., & Skett, K. (2013). A longitudinal study of end-of-life preferences or terminally-ill people who live alone. Health and Social Care in the Community, 21, 530–535.  https://doi.org/10.1111/hsc.12039.CrossRefGoogle Scholar
  3. 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
  4. Badrakalimuthu, V., & Barclay, S. (2014). Do people with dementia die at their preferred location of death? A systematic literature review and narrative synthesis. Age and Ageing, 43, 13–19.  https://doi.org/10.1093/ageing/aft151.CrossRefGoogle Scholar
  5. 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
  6. Bell, C. L., Somogyi-Zalud, E., & Masaki, K. H. (2009). Methodological review: Measured and reported congruence between preferred and actual place of death. Palliative Medicine, 23, 482–490.  https://doi.org/10.1177/0269216309106318.CrossRefGoogle Scholar
  7. Bito, S., Matsumura, S., Singer, M. K., et al. (2007). Acculturation and end-of-life decision making: comparison of Japanese and Japanese-American focus groups. Bioethics, 21, 251–262.  https://doi.org/10.1111/j.1467-8519.2007.00551.x.CrossRefGoogle Scholar
  8. Brinkman-Stoppelenburg, A., Rietjens, J. A., & Van Der Heide, A. (2014). The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine, 28, 1000–1025.  https://doi.org/10.1177/0269216314526272.CrossRefGoogle Scholar
  9. Brown, L., & Walter, T. (2014). Towards a social model of end-of-life care. British Journal of Social Work, 44, 2375–2390.  https://doi.org/10.1093/bjsw/bct087.CrossRefGoogle Scholar
  10. Bullock, K. (2011). The influence of culture on end-of-life decision making. Journal of Social Work in End-of-Life & Palliative Care, 7, 83–98.  https://doi.org/10.1080/15524256.2011.548048.CrossRefGoogle Scholar
  11. Carr, D. (2012). Racial and ethnic differences in advance care planning: Identifying subgroup patterns and obstacles. Journal of Aging and Health, 24, 923–947.  https://doi.org/10.1177/0898264312449185.CrossRefGoogle Scholar
  12. Carr, D., & Khodyakov, D. (2007). End-of-life health care planning among young-old adults: An assessment of psychosocial influences. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 62, S135–S141.  https://doi.org/10.1093/geronb/62.2.S135.CrossRefGoogle Scholar
  13. 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
  14. Chopik, W. J. (2017). Death across the lifespan: Age differences in death-related thoughts and anxiety. Death Studies, 41, 69–77.  https://doi.org/10.1080/07481187.2016.1206997.CrossRefGoogle Scholar
  15. Cicirelli, V. G. (2006). Older adult’s views on death. New York: Springer.Google Scholar
  16. Clarke, L. H., Korotchenko, A., & Bundon, A. (2012). ‘The calendar is just about up’: Older adults with multiple chronic conditions reflect on death and dying. Ageing and Society, 32, 1399–1417.  https://doi.org/10.1017/S0144686X11001061.CrossRefGoogle Scholar
  17. 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
  18. Elias, N. (1985). The loneliness of dying (Trans. Jephcott E.) New York: Blackwell.Google Scholar
  19. 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
  20. Flory, J., Yinong, Y. X., Gurol, I., Levinsky, N., Ash, A., & Emanuel, E. (2004). Place of death: U.S. trends since 1980. Health Affairs, 23(3), 194–200.CrossRefGoogle Scholar
  21. Foreman, L. M., Hunt, R. W., Luke, C. G., & Roder, D. M. (2006). Factors predictive of preferred place of death in the general population of South Australia. Palliative Medicine, 20, 447–453.  https://doi.org/10.1191/0269216306pm1149oa.CrossRefGoogle Scholar
  22. Fortner, B. V., & Neimeyer, R. (1999). Death anxiety in older adults: A quantitative review. Death Studies, 23, 387–411.  https://doi.org/10.1080/074811899200920.CrossRefGoogle Scholar
  23. 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
  24. Freytag, J., & Rauscher, E. A. (2017). The importance of intergenerational communication in advance care planning: Generational relationships among perceptions and beliefs. Journal of Health Communication, 22, 488–496.  https://doi.org/10.1080/10810730.2017.1311971.CrossRefGoogle Scholar
  25. 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.
  26. Gomes, B., & Higginson, I. J. (2008). Where people die (1974–2030): Past trends, future projections and implications for care. Palliative Medicine, 22, 33–41.  https://doi.org/10.1177/0269216307084606.CrossRefGoogle Scholar
  27. Gomes, B., Calanzani, N., & Higginson, I. J. (2011). Reversal of the British trends in place of death: time series analysis 2004–2010. Palliative Medicine, 26, 102–107.  https://doi.org/10.1177/0269216311432329.CrossRefGoogle Scholar
  28. 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.
  29. Gott, M., Seymour, J., Bellamy, G., Clark, D., & Ahmedzai, S. (2004). Older people’s views about home as a place of care at the end of life. Palliative Medicine, 18, 460–467.  https://doi.org/10.1191/0269216304pm889oa.CrossRefGoogle Scholar
  30. Heikkinen, A. (2017). Kuoleman kohtaamisen paikka. Master’s thesis. Social work. Rovaniemi: University of Lapland.Google Scholar
  31. Higgs, P., & Gilleard, C. (2015). Rethinking old age. Theorising the fourth age. London: Palgrave Macmillan.CrossRefGoogle Scholar
  32. Hoare, S., Morris, S. Z., Kelly, M. P., Kuhn, I., & Barclay, S. (2015). Do patients want to die at home? A systematic review of the UK literature, focused on missing preferences for place of death. PLoS One.  https://doi.org/10.1371/journal.pone.0142723.CrossRefGoogle Scholar
  33. Hofer, J., Busch, H., Šolcová, I. P., & Tavel, P. (2017). Relationship between subjectively evaluated health and fear of death among elderly in three cultural contexts. International Journal of Aging & Human Development, 84, 343–365.  https://doi.org/10.1177/0091415016685331.CrossRefGoogle Scholar
  34. 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.
  35. Hunt, K. J., Shlomo, N., & Addington-Hall, J. (2014a). End-of-life care and achieving preferences for place of death in England: Results of a population-based survey using the VOICES-SF questionnaire. Palliative Medicine, 28, 412–421.  https://doi.org/10.1177/0269216313512012.CrossRefGoogle Scholar
  36. Hunt, K. J., Shlomo, N., & Addington-Hall, J. (2014b). End-of-life care and preferences for place of death among the oldest old: Results of a population-based survey using. VOICES-Short Form. Journal of Palliative Medicine, 17, 176–182.  https://doi.org/10.1089/jpm.2013.0385.CrossRefGoogle Scholar
  37. Iecovich, E., Carmel, S., & Bachner, Y. G. (2009). Where they want to die: Correlates of elderly persons’ preferences for death site. Social Work in Public Health, 24, 527–542.  https://doi.org/10.1080/19371910802679341.CrossRefGoogle Scholar
  38. Jeong, S. Y., Higgins, I., & McMillan, M. (2011). Experiences with advance care planning: Older people and family members’ perspective. International Journal of Older People Nursing, 6(3), 176–186.CrossRefGoogle Scholar
  39. Jeppson-Grassman, E., & Whitaker, A. (2007). End of life and dimensions of civil society: The Church of Sweden in a new geography of death. Mortality, 12, 261–280.  https://doi.org/10.1080/13576270701430635.CrossRefGoogle Scholar
  40. Kastenbaum, R. J. (1998). Death, society, and human experience. New York: Routledge.Google Scholar
  41. Ke, L.-S., Huang, X., Hu, W.-Y., O’Connor, M., & Lee, S. (2017). Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies. Palliative Medicine, 31, 394–405.  https://doi.org/10.1177/0269216316663507.CrossRefGoogle Scholar
  42. Kelly, C. M., Masters, J. L., & DeViney, S. (2013). End-of-life planning activities: An integrated process. Death Studies, 37, 529–551.  https://doi.org/10.1080/07481187.2011.653081.CrossRefGoogle Scholar
  43. Khosla, N., Curl, A. L., & Washington, K. T. (2016). Trends in engagement in advance care planning behaviors and the role of socioeconomic status. The American Journal of Hospice and Palliative Care, 33, 651–657.  https://doi.org/10.1177/1049909115581818.CrossRefGoogle Scholar
  44. Ko, E., & Berkman, C. S. (2012). Advance directives among Korean American older adults: Knowledge, attitudes, and behavior. Journal of Gerontological Social Work, 55, 484–502.  https://doi.org/10.1080/01634372.2012.667523.CrossRefGoogle Scholar
  45. Ko, E., Cho, S., Perez, R. L., Yeo, Y., & Palomino, H. (2013). Good and bad death: Exploring the perspectives of older Mexican Americans. Journal of Gerontological Social Work, 56, 6–25.  https://doi.org/10.1080/01634372.2012.715619.CrossRefGoogle Scholar
  46. Ko, E., Lee, J., & Hong, Y. (2016). Willingness to complete advance directives among low-income older adults living in the USA. Health & Social Care in the Community, 24, 708–716.  https://doi.org/10.1111/hsc.12248.CrossRefGoogle Scholar
  47. Krause, N., & Hayward, D. R. (2015). Acts of contrition, forgiveness by god, and death anxiety among older Mexican Americans. The International Journal for the Psychology of Religion, 25, 57–73.  https://doi.org/10.1080/10508619.2013.857256.CrossRefGoogle Scholar
  48. Kübler-Ross, E. (1969). On death and dying. New York: Macmillan.Google Scholar
  49. Leishman, J. L. (2009a). Introduction. In J. L. Leishman (Ed.), Perspectives on death and dying (pp. 1–13). Keswick: M&K Publishing.Google Scholar
  50. 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
  51. Lloyd, L. (2010). End-of-life issues. In D. Dannefer & C. Phillipson (Eds.), The SAGE handbook of social gerontology (pp. 618–629). London: Sage.CrossRefGoogle Scholar
  52. Lovell, A., & Yates, P. (2014). Advance Care Planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliative Medicine, 28, 1026–1035.  https://doi.org/10.1177/0269216314531313.CrossRefGoogle Scholar
  53. Luptak, M. (2004). Social work and end-of-life care for older people: A historical perspective. Health & Social Work, 29(1), 7–15.CrossRefGoogle Scholar
  54. Lynn, T., Curtis, A., & Lagerway, M. D. (2016). Association between attitude toward death and completion of advance directives. OMEGA—Journal of Death and Dying, 74, 193–211.  https://doi.org/10.1177/0030222815598418.CrossRefGoogle Scholar
  55. Malcomson, H., & Bisbee, S. (2009). Perspectives of healthy elders on advance care planning. Journal of American Academy Nurse Practitioners, 21, 18–23.  https://doi.org/10.1111/j.1745-7599.2008.00369.x.CrossRefGoogle Scholar
  56. Miettinen, S. (2006). Eron aika. Tyttärien kertomuksia ikääntyneen vanhemman kuolemasta. Yhteiskuntapolitiikan laitoksen tutkimuksia 4. Helsinki: Yliopistopaino.Google Scholar
  57. 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
  58. Piers, R. D., Van Eechoud, I. J., Van Camp, S., Grypdonck, M., Deveugele, M., Verbeke, N. C., et al. (2013). Advance care planning in terminally ill and frail older persons. Patient Education and Counselling, 90, 323–329.  https://doi.org/10.1016/j.pec.2011.07.008.CrossRefGoogle Scholar
  59. Raz, M., Shalev, C., & Amit, S. (2011). Dying of ‘old age’ in Israel. The European Legacy, 16, 363–375.  https://doi.org/10.1080/10848770.2011.575599.CrossRefGoogle Scholar
  60. Russac, R. J., Gatliff, C., Reece, M., & Spottswood, D. (2007). Death anxiety across the adult years: An examination of age and gender effects. Death Studies, 31, 549–561.  https://doi.org/10.1080/07481180701356936.CrossRefGoogle Scholar
  61. Samsi, K., & Manthorpe, J. (2011). “I live for today”: A qualitative study investigating older people’s attitudes to advance planning. Health and Social Care in the Community, 19, 52–59.  https://doi.org/10.1111/j.1365-2524.2010.00948.x.CrossRefGoogle Scholar
  62. 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
  63. 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.
  64. Shapiro, S. P. (2015). Do advance directives direct? Journal of Health Politics Policy and Law, 40, 487–530.  https://doi.org/10.1215/03616878-2888424.CrossRefGoogle Scholar
  65. 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
  66. 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
  67. 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

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Marjo Outila
    • 1
    Email author
  • Marjaana Seppänen
    • 2
  • Pilvikki Lantela
    • 1
  • Pekka Vasari
    • 1
  1. 1.Faculty of Social SciencesUniversity of LaplandRovaniemiFinland
  2. 2.Faculty of Social SciencesUniversity of HelsinkiHelsinkiFinland

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