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. 2017 Aug 30;1(1):igx011.
doi: 10.1093/geroni/igx011. eCollection 2017 Mar 1.

"When I Said I Wanted to Die at Home I Didn't Mean a Nursing Home": Care Trajectories at the End of Life

Margaret Penning  1   2 , Denise S Cloutier  2   3 , Kim Nuernberger  2 , Deanne Taylor  4
Affiliations

"When I Said I Wanted to Die at Home I Didn't Mean a Nursing Home": Care Trajectories at the End of Life

Margaret Penning et al. Innov Aging. .

Abstract

Background and objectives: Little is known regarding the care trajectories older adults experience at the end of life (EOL). We drew on a structural/institutional life course perspective to examine the trajectories evident among older adults transitioning through the Canadian formal long-term care system. The sequence of care transitions as well as the impact of social location, social and economic resources, and health-related factors on these trajectories were examined.

Research design and methods: To identify EOL care trajectories, we used administrative data collected on older adults (aged 65+) who received publicly subsidized long-term care services (e.g., nursing home and home and community-based care) in one health region in British Columbia, Canada from January 1, 2008 through December 31, 2011 and who died by March 31, 2012 (n = 11,816). Multinomial logistic regression analyses assessed the impact of selected covariates on these trajectories.

Results: The majority of those studied (65.4%) died outside of acute hospital settings. The most common trajectories involved transitions from home care to nursing home/residential care to non-hospital death (39.5%) and transitions from in-home care to hospital death (22.4%). These and other trajectories were shaped by social structural factors, access to social and economic resources, as well as health status and prior hospitalizations.

Discussion and implications: Despite calls for minimizing hospital-based deaths and maximizing home-based deaths, older LTC recipients often experience EOL care trajectories that end in death in a nursing home care setting. Our findings point to the value of a structural/institutional life course perspective in informing an understanding of who experiences this and other major EOL care trajectories. In doing so, they also provide direction for policy and practice designed to address inequalities and enhance the quality of EOL care.

Keywords: End of life; Home and community-based care and services; Long-term care; Nursing homes; Palliative care.

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Figure 1.
Figure 1.
End-of-life care trajectories.
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