Death and the oldest old: Attitudes and preferences for end-of-life care - Qualitative research within a population-based cohort study

Fleming, Jane, Farquhar, Morag, , Cambridge City over-75s Cohort (CC75C) study collaboration, Brayne, Carol and Barclay, Stephen (2016) Death and the oldest old: Attitudes and preferences for end-of-life care - Qualitative research within a population-based cohort study. PLoS One, 11 (4). ISSN 1932-6203

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Abstract

Introduction: Increasing longevity means more people will be dying in very old age, but little is known about the preferences of the ‘oldest old’ regarding their care at the end of life. Aims: To understand very old people’s preferences regarding care towards the end of life and attitudes towards dying, to inform policy and practice. Methods: Qualitative data collection for n = 42 population-based cohort study participants aged 95–101 (88% women, 42% in long-term-care): topic-guided interviews with n = 33 participants and n = 39 proxy informants, most with both (n = 30: 4 jointly + separate interviews for 26 dyads). Results: Death was a part of life: these very old people mainly live day-to-day. Most were ready to die, reflecting their concerns regarding quality of life, being a nuisance, having nothing to live for and having lived long enough. Contrasting views were rare exceptions but voiced firmly. Most were not worried about death itself, but concerned more about the dying process and impacts on those left behind; a peaceful and pain-free death was a common ideal. Attitudes ranged from not wanting to think about death, through accepting its inevitable approach to longing for its release. Preferring to be made comfortable rather than have life-saving treatment if seriously ill, and wishing to avoid hospital, were commonly expressed views. There was little or no future planning, some consciously choosing not to. Uncertainty hampered end-of-life planning even when death was expected soon. Some stressed circumstances, such as severe dependency and others’ likely decision-making roles, would influence choices. Carers found these issues harder to raise but felt they would know their older relatives’ preferences, usually palliative care, although we found two discrepant views. Conclusions: This study’s rare data show ≥95-year-olds are willing to discuss dying and end-of-life care but seldom do. Formal documentation of wishes is extremely rare and may not be welcome. Although being “ready to die” and preferring a palliative approach predominated, these preferences cannot be assumed.

Item Type: Article
Additional Information: © 2016 Fleming et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
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Depositing User: Pure Connector
Date Deposited: 22 Oct 2016 21:45
Last Modified: 30 Aug 2020 23:41
URI: https://ueaeprints.uea.ac.uk/id/eprint/61008
DOI: 10.1371/journal.pone.0150686

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