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Planning for the end of life:: the views of older people about advance care statements

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  • Seymour, Jane
  • Gott, Merryn
  • Bellamy, Gary
  • Ahmedzai, Sam H.
  • Clark, David

Abstract

Advance statements about medical care have been heralded by some as a solution to the problem of end of life decision making for people not able to participate in discussions about their care. Since death is now most likely to occur at the end of a long life, it is important to understand the views and values which older people express in relation to these. This paper reports on a study which used focus groups to explore older people's views about advance statements and the role these might play in end of life care decisions. Participants were 32 older people or their representatives who belonged to six diverse community groups in Sheffield, UK. Advance statements were understood primarily in terms of their potential to aid personal integrity and to help the families of older people by reducing the perceived 'burden' of their decision making. However, concerns were expressed about the perceived link between advance care statements and euthanasia, their future applicability, and the possibility that preferences for care may change. Participants also reported worries and difficulties related to thinking about and discussing death and dying. Trust between doctor and patient, built up over time, was perceived to be important in creating an environment in which the communication necessary to underpin advance care planning could take place. Lastly, participants did not perceive that during dying they would be ready necessarily to adhere to an advance statement and 'disengage' from their lives. We conclude that, rather than emphasising the completion of advance statements, it may be preferable to conceptualise advance care planning as a process of discussion and review between clinicians, patients and families.

Suggested Citation

  • Seymour, Jane & Gott, Merryn & Bellamy, Gary & Ahmedzai, Sam H. & Clark, David, 2004. "Planning for the end of life:: the views of older people about advance care statements," Social Science & Medicine, Elsevier, vol. 59(1), pages 57-68, July.
  • Handle: RePEc:eee:socmed:v:59:y:2004:i:1:p:57-68
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    Cited by:

    1. Gott, M. & Small, Neil & Barnes, Sarah & Payne, Sheila & Seamark, David, 2008. "Older people's views of a good death in heart failure: Implications for palliative care provision," Social Science & Medicine, Elsevier, vol. 67(7), pages 1113-1121, October.
    2. Zivkovic, Tanya, 2018. "Forecasting and foreclosing futures: The temporal dissonance of advance care directives," Social Science & Medicine, Elsevier, vol. 215(C), pages 16-22.
    3. Sanders, Caroline & Rogers, Anne & Gately, Claire & Kennedy, Anne, 2008. "Planning for end of life care within lay-led chronic illness self-management training: The significance of 'death awareness' and biographical context in participant accounts," Social Science & Medicine, Elsevier, vol. 66(4), pages 982-993, February.
    4. Nicholson, C. & Meyer, J. & Flatley, M. & Holman, C. & Lowton, K., 2012. "Living on the margin: Understanding the experience of living and dying with frailty in old age," Social Science & Medicine, Elsevier, vol. 75(8), pages 1426-1432.
    5. Hu, Wen-Yu & Huang, Chien-Hsun & Chiu, Tai-Yuan & Hung, Shou-Hung & Peng, Jen-Kuei & Chen, Ching-Yu, 2010. "Factors that influence the participation of healthcare professionals in advance care planning for patients with terminal cancer: A nationwide survey in Taiwan," Social Science & Medicine, Elsevier, vol. 70(11), pages 1701-1704, June.
    6. Maciej Koniewski & Ilona Barańska & Violetta Kijowska & Jenny T. Steen & Anne B. Wichmann & Sheila Payne & Giovanni Gambassi & Nele Den Noortgate & Harriet Finne-Soveri & Tinne Smets & Lieve den Block, 2022. "Measuring relatives’ perceptions of end-of-life communication with physicians in five countries: a psychometric analysis," European Journal of Ageing, Springer, vol. 19(4), pages 1561-1570, December.
    7. Sheng‐Yu Fan & Huei‐Chuan Sung & Shu‐Chen Wang, 2019. "The experience of advance care planning discussion among older residents in a long‐term care institution: A qualitative study," Journal of Clinical Nursing, John Wiley & Sons, vol. 28(19-20), pages 3451-3458, October.
    8. Zivkovic, Tanya, 2021. "About face: Relationalities of ageing and dying in Chinese migrant families," Social Science & Medicine, Elsevier, vol. 291(C).

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