Hostname: page-component-78c5997874-g7gxr Total loading time: 0 Render date: 2024-11-06T07:10:00.917Z Has data issue: false hasContentIssue false
  • English
  • Français

Researching the end-of-life in old age: cultural, ethical and methodological issues

Published online by Cambridge University Press:  15 November 2010

LIZ LLOYD ,
KATE WHITE  and
EILEEN SUTTON
LIZ LLOYD*
Affiliation:
School for Policy Studies, University of Bristol, Bristol, UK.
KATE WHITE
Affiliation:
School for Policy Studies, University of Bristol, Bristol, UK.
EILEEN SUTTON
Affiliation:
School for Policy Studies, University of Bristol, Bristol, UK.
*
Address for correspondence: Liz Lloyd, School for Policy Studies, University of Bristol, 8 Priory Road, Bristol BS8 1TZ, UK. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Increased life expectancy has strengthened the association between old age and death, with significant implications for gerontology and for the generation of knowledge through research. The global rise in chronic disease has had a significant impact on the duration and shape of dying trajectories in old age and their variations. This development poses ethical and methodological challenges for researchers, not least because it is often difficult to establish whether an older person is ‘dying from’ as opposed to ‘living with’ one or more diseases. This paper reports a comprehensive literature review of empirical research on the end-of-life in old age, and has two inter-related themes. It explores the social and cultural contexts of death and critically analyses the methods and ethical approaches adopted by researchers. Cross-cultural studies and studies in which cultural factors were of prime interest were selected with a view to examining the concept of a ‘good death’ in old age. The paper discusses the evidence of cultural similarities and differences and the impact of social and cultural change on ideas concerning a good death. It identifies contemporary influences and pressures on end-of-life care for older people and discusses the significance of communication and the roles of families and service providers. The paper concludes by identifying substantive and methodological lessons for researchers in gerontology and suggests ways in which the impact of research might be enhanced.

Keywords

old ageend-of-lifecultureethnicitymethods
Type
Articles
Information
Ageing & Society , Volume 31 , Issue 3: Methodologies for Ageing Populations , April 2011 , pp. 386 - 407
Copyright
Copyright © Cambridge University Press 2010

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

*Andersson, M., Hallberg, I. R. and Edberg, A.-K. 2008. Old people receiving municipal care, their experiences of what constitutes a good life in the last phase of life: a qualitative study. International Journal of Nursing Studies, 45, 6, 818–28.CrossRefGoogle ScholarPubMed
*Becker, G. 2002. Dying away from home: quandaries of migration for elders in two ethnic groups. Journal of Gerontology: Social Sciences, 57B, 2, S79–95.CrossRefGoogle Scholar
Bern-Klug, M. 2004. The ambiguous dying syndrome. Health and Social Work, 29, 1, 55–65.CrossRefGoogle ScholarPubMed
*Bito, S., Matsamura, S., Kagawa Singer, M., Meredit, L. S., Fukuhara, S. and Wenger, N. S. 2007. Acculturation and end-of-life decision making: comparison of Japanese and Japanese-American focus groups. Bioethics, 21, 5, 251–62.CrossRefGoogle ScholarPubMed
*Blackhall, L. J., Frank, G., Murohy, S. T., Michel, V., Palmer, J. M. and Azen, S. P. 1999. Ethnicity and attitudes towards life sustaining technology. Social Science and Medicine, 48, 12, 1779–89.CrossRefGoogle ScholarPubMed
Bolmsjo, I. 2008. End-of-life care for old people: a review of the literature. American Journal of Hospice and Palliative Care, 25, 4, 328–38.CrossRefGoogle Scholar
*Bowman, K. W. and Singer, P. A. 2001. Chinese seniors' perspectives on end-of-life decisions. Social Science and Medicine, 53, 4, 455–64.CrossRefGoogle ScholarPubMed
Brijnath, B. R. 2008. The legislative and political contexts surrounding dementia care in India. Ageing & Society, 28, 7, 736–25.CrossRefGoogle Scholar
*Carmel, S. 2001. The will to live: gender differences among elderly persons. Social Science and Medicine, 52, 6, 949–58.CrossRefGoogle Scholar
*Chan, C. K. L. and Yau, M. K. 2009. Death preparation among the ethnic Chinese well-elderly in Singapore: an exploratory study. Omega, 60, 3, 225–39.CrossRefGoogle ScholarPubMed
*Chung, K. and Samson, L. 2009. Does caregiver knowledge matter for hospice enrolment and beyond? Pilot study of minority hospice patients. American Journal of Hospice and Palliative Medicine, 26, 3, 165–71.CrossRefGoogle ScholarPubMed
Counts, D. A. and Counts, D. 2004. The good, the bad and the unresolved death in Kaliai. Social Science and Medicine, 58, 5, 887–97.CrossRefGoogle ScholarPubMed
*Daaleman, T., Williams, C. S., Hamilton, V. L. and Zimmerman, S. 2008. Spiritual care at the end-of-life in long-term care. Medical Care, 46, 1, 85–91.CrossRefGoogle ScholarPubMed
*Depaola, S., Griffin, M., Young, J. R. and Neimeyer, R. A. 2003. Death anxiety and attitudes toward the elderly among older adults: the role of gender and ethnicity. Death Studies, 24, 4, 335–54.CrossRefGoogle Scholar
Dwyer, L.-L., Nordfeldt, L. and Ternestedt, B.-M. 2008. Three nursing home residents speak about meaning at the end-of-life. Nursing Ethics, 15, 1, 97–109.CrossRefGoogle ScholarPubMed
Flory, J., Young-Xu, Y., Gurol, I., Levinsky, N., Ash, A. and Emanuel, E. 2004. Place of death: US trends since 1980. Health Affairs, 23, 3, 194–200.CrossRefGoogle ScholarPubMed
*Fried, O. 2003. Palliative care for patients with end-stage renal failure: reflections from Central Australia. Palliative Medicine, 17, 6, 514–59.CrossRefGoogle ScholarPubMed
Gamliel, T. 2008. Performance versus social invisibility: what can be learned from the wailing culture of old-age Yemenite-Jewish women? Women's Studies International Forum, 31, 3, 209–18.CrossRefGoogle Scholar
*Gelfand, D. E., Balcazar, H., Parzuchowski, J. and Lenox, S. 2004. Issues in hospice utilisation by Mexicans. Journal of Applied Gerontology, 24, 1, 3–19.CrossRefGoogle Scholar
George, L. K. 2002. Research design in end-of-life research: state of science. The Gerontologist, 42, special issue 3, 99–103.CrossRefGoogle ScholarPubMed
*Gott, M., Small, N., Barnes, S., Payne, S. and Seamark, D. 2008. Older people's views of a good death in heart failure: implications for palliative care provision. Social Science and Medicine, 67, 7, 1113–21.CrossRefGoogle ScholarPubMed
Grande, G. E., Addington-Hall, J. M. and Todd, C. 1998. Place of death and access to home care services: are certain patient groups at a disadvantage? Social Science and Medicine, 47, 5, 565–79.CrossRefGoogle ScholarPubMed
Gu, D., Liu, G., Vlosky, D. A. and Yi, Z. 2007. Factors associated with place of death among the Chinese oldest old. Journal of Applied Gerontology, 26, 1, 34–57.CrossRefGoogle Scholar
Hayslip, B. and Peveto, C. 2005. Cultural Changes in Attitudes Towards Death, Dying and Bereavement. Springer Publishing Company, New York.Google Scholar
Jeppsson-Grassman, E. and Whitaker, A. 2007. End-of-life and dimensions of civil society: the Church of Sweden in a new geography of death. Mortality, 12, 3, 261–80.CrossRefGoogle Scholar
*Johnson, K. S., Kuchibhatla, M. and Tulsky, J. A. 2008. What explains racial differences in the use of advance directives and attitudes towards hospice care? Journal of the American Geriatrics Society, 56, 10, 1953–8.CrossRefGoogle Scholar
*Johnson, K. S., Kuchibhatla, M. and Tulsky, J. A. 2009. Racial differences in self-reported exposure to information about hospice care. Journal of Palliative Medicine, 12, 10, 921–7.CrossRefGoogle ScholarPubMed
King, R. and Vullnetari, J. 2006. Orphan pensioners and migrating grandparents: the impact of mass migration on older people in rural Albania. Ageing & Society, 26, 5, 783–816.CrossRefGoogle Scholar
*Klinkenberg, M., Willems, D. L., Onwuteaka Philipsen, B. D., Deeg, D. J. H. and van der Wal, G. 2004. Preferences in end-of-life care of older persons: after death interviews with proxy respondents. Social Science and Medicine, 59, 12, 2467–77.CrossRefGoogle ScholarPubMed
*Koffman, J. and Higginson, I. J. 2001. Accounts of carers' satisfaction with health care at the end-of-life: a comparison of first generation black Caribbeans and white patients with advanced disease. Palliative Medicine, 15, 4, 337–45.CrossRefGoogle ScholarPubMed
Kwak, J. and Haley, W. E. 2005. Current research findings on end-of-life decision making among racially/ethnically diverse groups. The Gerontologist, 45, 634–41s.CrossRefGoogle ScholarPubMed
*Kwok, T., Twinn, S. and Yan, E. 2007. The attitudes of Chinese family caregivers of older people with dementia towards life sustaining treatments. Journal of Advanced Nursing, 58, 3, 256–62.CrossRefGoogle ScholarPubMed
Leichtentritt, R. D. and Rettig, K. D. 2001. The construction of the good death: a dramaturgy approach. Journal of Aging Studies, 15, 1, 85–103.CrossRefGoogle Scholar
Lloyd, L. 2004. Mortality and morality: ageing and the ethics of care. Ageing & Society, 24, 2, 235–56.CrossRefGoogle Scholar
Mani, R. K. 2006. End-of-life care in India. Intensive Care Medicine, 32, 7, 1066–8.CrossRefGoogle ScholarPubMed
*Matsui, M. 2007. Perspectives of elderly people on advance directives in Japan. Journal of Nursing Scholarship, 39, 2, 172–6.CrossRefGoogle ScholarPubMed
*Matsui, M., Braun, K. L. and Karel, H. 2008. Comparison of end-of-life preferences between Japanese elders in the United States and Japan. Journal of Transcultural Nursing, 19, 2, 167–74.CrossRefGoogle ScholarPubMed
McGrath, C. L. 2000. Issues influencing the provision of palliative care services to remote Aboriginal communities in the Northern Territory. Australian Journal of Rural Health, 8, 1, 47–51.CrossRefGoogle ScholarPubMed
McPherson, C. J. and Addington-Hall, J. 2003. Judging the quality of care at the end-of-life: can proxies provide reliable information? Social Science and Medicine, 56, 1, 95–109.CrossRefGoogle ScholarPubMed
*Mehta, K. 1999. Ethnic differences in perceptions, preparations and rituals regarding death in Singapore. Omega, 38, 4, 255–67.CrossRefGoogle Scholar
*Orpett-Long, S. 2004. Cultural scripts for a good death in Japan and the United States: similarities and differences. Social Science and Medicine, 58, 5, 913–28.CrossRefGoogle Scholar
*Ott, B. 2008. Views of African American nursing home residents about living wills. Geriatric Nursing, 29, 2, 117–24.CrossRefGoogle ScholarPubMed
*Payne, S., Seymour, J. E., Chapman, A. and Holloway, M. 2008. Older Chinese people's views on food: implications for supportive cancer care. Ethnicity and Health, 13, 5, 497–514.CrossRefGoogle ScholarPubMed
*Pleschberger, S. 2007. Dignity and the challenge of dying in nursing homes: the residents' view. Age and Ageing, 36, 2, 197–202.CrossRefGoogle ScholarPubMed
*Saldov, M., Kakai, H., McLaughlin, L. and Thomas, A. 1998. Cultural barriers in oncology: issues in obtaining medical informed consent from Japanese-American elders in Hawaii. Journal of Cross-cultural Gerontology, 13, 3, 265–79.CrossRefGoogle ScholarPubMed
*Schroepfer, T. A. 2006. Mind frames towards dying and factors motivating their adoption by terminally ill elders. Journal of Gerontology: Social Sciences, 61B, 3, S129–39.CrossRefGoogle Scholar
Seale, C. and van der Geest, S. 2004. Good and bad death: introduction. Social Science and Medicine, 58, 5, 883–5.CrossRefGoogle ScholarPubMed
*Seymour, J., Gott, M., Bellamy, G., Ahmedzai, S. H. and Clark, D. 2004. Planning for the end-of-life: the views of older people about advance care statements. Social Science and Medicine, 59, 1, 57–68.CrossRefGoogle ScholarPubMed
*Seymour, J., Payne, S., Chapman, A. and Holloway, M. 2007. Hospice or home? Expectations of end-of-life care among white and Chinese older people in the UK. Sociology of Health and Illness, 29, 6, 872–90.CrossRefGoogle ScholarPubMed
Shanmugasundaram, S., Chapman, Y. and O'Connor, M. 2006. Development of palliative care in India: an overview. International Journal of Nursing Practice, 12, 4, 241–6.CrossRefGoogle ScholarPubMed
*Shrank, W., Kutner, J. S., Richardson, T., Mularski, R. A., Fischer, S. and Kagawa-Singer, M. 2005. Focus group findings about the influence of culture on communication preferences in end-of-life care. Journal of General Internal Medicine, 20, 8, 703–9.CrossRefGoogle ScholarPubMed
Spence, D., Merriman, A. and Binagwaho, A. 2004. Palliative care in Africa and the Caribbean. PLoS Medicine, 1, 1, e5. doi: 10.1371/journal.pmed.001000511, e5.CrossRefGoogle ScholarPubMed
Timmermans, S. 2005. Death brokering: constructing culturally appropriate deaths. Sociology of Health and Illness, 27, 7, 993–1013.CrossRefGoogle ScholarPubMed
*Van der Geest, S. 2004. Dying peacefully: considering good death and bad death in Kwahu-Tafo, Ghana. Social Science and Medicine, 58, 5, 899–911.CrossRefGoogle ScholarPubMed
Walter, T. 2003. Historical and cultural variants on the good death. British Medical Journal, 327, 7408, 218–20.CrossRefGoogle ScholarPubMed
Williams, A. and Tumwekwase, G. 2001. Multiple impacts of the HIV/AIDS epidemic on the aged in rural Uganda. Journal of Cross-cultural Gerontology, 16, 3, 221–36.CrossRefGoogle Scholar
Williams, W. 1990. A Protestant Legacy: Attitudes to Death and Illness Among Older Aberdonians. Clarendon, Oxford.Google Scholar
Wink, P. and Scott, J. 2005. Does religiousness buffer against the fear of death and dying in late adulthood? Findings from a longitudinal study. Journal of Gerontology: Psychological Sciences, 60B, 4, P207–14.CrossRefGoogle Scholar
*Winter, L. and Parker, B. 2007. Current health and preferences for life-prolonging treatments: an application of prospect theory to end-of-life decision making. Social Science and Medicine, 65, 8, 1695–707.CrossRefGoogle ScholarPubMed