Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

Abstract

Background: Despite fast-growing 'older old' populations, 'place of care' trajectories for very old people approaching death with or without dementia are poorly described and understood. Aim: To explore end-of-life transitions of 'older old' people across the cognitive spectrum. Design: Population-based prospective cohort (United Kingdom) followed to death. Setting/participants: Mortality records linked to 283 Cambridge City over-75s Cohort participants' cognitive assessments <1 year before dying aged ≥85 years. Results: Overall, 69% were community dwelling in the year before death; of those with severe cognitive impairment 39% were community dwelling. Only 6% subsequently changed their usual address. However, for 55% their usual address on death registration was not their place of death. Dying away from the 'usual address' was associated with cognition, overall fewer moving with increasing cognitive impairment -cognition intact 66%, mildly/moderately impaired 55% and severely impaired 42%, trend p = 0.003. This finding reflects transitions being far more common from the community than from institutions: 73% from the community and 28% from institutions did not die where last interviewed (p < 0.001). However, severely cognitively impaired people living in the community were the most likely group of all to move: 80% (68%−93%). Hospitals were the most common place of death except for the most cognitively impaired, who mostly died in care homes. Conclusion: Most very old community-dwelling individuals, especially the severely cognitively impaired, died away from home. Findings also suggest that long-term care may play a role in avoidance of end-of-life hospital admissions. These results provide important information for planning end-of-life services for older people across the cognitive spectrum, with implications for policies aimed at supporting home deaths. KeywordsCognitive impairment, dementia, aged, 80 and over, aged, frail elderly, patient transfer, residential characteristics, homes for the aged, nursing homes, delivery of health care, terminal care 221What is already known about the topic?• More people will be dying in very old age and dying with dementia or cognitive impairment.• Half the very old move in the last year of life and die away from their usual residence, but it is poorly understood how cognitive impairment affects these transitions. What this article adds?• Prospective population-based research with very old people, including cognitive assessments, reveals patterns in individual trajectories through care settings that routine data cannot explore.• Although 39% of ≥85-year-olds with severe cognitive impairment live in the community in their last year of life, only 8% die there, compared with 20% home deaths among cognitively unimpaired ≥85-year-olds.• The proportions of very old people dying in hospitals or in care homes decrease and increase, respectively, with worsening cognitive impairment. Implications for practice, theory or policy• Community end-of-life care provision needs to in...

International Variation in Place of Death of Older People Who Died From Dementia in 14 European and non-European Countries

“…For the other countries, one possible explanation might be that older people with dementia who are more highly educated, or married, as well as those aged 65 to 79 and men in general, are more likely to reside at home, but are unable to remain there until the very end of life, resulting in an end-of-life hospital admission and hospital death. 9,36,38 One Dutch study found that for older people, 2 main scenarios were likely: residing in a nursing home, lowering the chances of hospital death, or staying at home as long as possible, with a higher likelihood of hospital death. 39 Consequently, it could be suggested that among older people with dementia, those who are most likely to reside at home, in particular, should be supported by specialist palliative care services to reduce the number of hospital deaths.…”

Assessment and management of dementia in the general hospital setting

“…92 Most very old individuals with severe dementia in the community die away from usual place of residence, and hospitals remain the most common place of death. 93 Ideally, health and social care professionals should discuss preferences with the person with dementia while they still have capacity and record advance care planning statements, advance decisions to refuse particular treatments, preferred place of care in future and lasting power of attorney. 87…”

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