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Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care - Qualitative Research within a Population-Based Cohort Study

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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.



aged, 80 and over, frail elderly, attitude to death, attitude, patient preference, advance care planning, palliative care, terminal care, older old, oldest old, end of life care, end-of-life care, place of death, place of care, locus of care

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Public Library Of Science
Department of Health (via National Institute for Health Research (NIHR)) (unknown)
We thank all the past CC75C sponsors for financial support spanning two decades (see ttp:// for full list of project grants), particularly the Abbeyfield Society for current funding and the BUPA Foundation for support under their Health and Care of Older People grant. CC75C was a member study of the National Institute for Health Research funded Collaboration for Leadership in Applied Health Research & Care (CLAHRC) for Cambridgeshire and Peterborough. All researchers were independent from funders. No funder sponsor played any role in study design, data collection and analysis, decision to publish or preparation of the manuscript.