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Social and clinical determinants of preferences and their achievement at the end of life: Prospective cohort study of older adults receiving palliative care in three countries

Higginson, Irene J.; Bennett, Emma; Daveson, Barbara A.; Cooper, Francesca; Morrison, R. Sean; Yi, Deokhee; Daveson, Barbara; de Wolf-Linder, Susanne; Meier, Diane; Dzingina, Mendwas; Smith, Melinda; Ellis-Smith, Clare; Ryan, Karen; Evans, Catherine; McQuillan, Regina; Ferguson, Taja; Normand, Charles; Henson, Lesley; Johnston, Bridget M.; Murtagh, Fliss E.M.; Higginson, Irene J; Kaler, Paramjote; Kane, Pauline; Johnston, Bridget; Klass, Lara; Lawlor, Peter; McCrone, Paul; Molony, Susan; Normand, Charles; Pannell, Caty; McQuillan, Regina; Pantilat, Steve; Meier, Diane; Reison, Anastasia; Selman, Lucy; Morrison, Sean; Tobin, Katy; Murtagh, Fliss; Vohora, Rowena; Wei, Gao; Ryan, Karen; Smith, Melinda; Y, Deokhee

Authors

Irene J. Higginson

Emma Bennett

Barbara A. Daveson

Francesca Cooper

R. Sean Morrison

Deokhee Yi

Barbara Daveson

Susanne de Wolf-Linder

Diane Meier

Mendwas Dzingina

Melinda Smith

Clare Ellis-Smith

Karen Ryan

Catherine Evans

Regina McQuillan

Taja Ferguson

Charles Normand

Lesley Henson

Bridget M. Johnston

Irene J Higginson

Paramjote Kaler

Pauline Kane

Bridget Johnston

Lara Klass

Peter Lawlor

Paul McCrone

Susan Molony

Charles Normand

Caty Pannell

Regina McQuillan

Steve Pantilat

Diane Meier

Anastasia Reison

Lucy Selman

Sean Morrison

Katy Tobin

Rowena Vohora

Gao Wei

Karen Ryan

Melinda Smith

Deokhee Y



Abstract

© 2017 The Author(s). Background: Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death. Methods: We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors. Results: One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40-9.90) and living with someone (OR 2.19, 1.33-3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14-5.03). Conversely, functional independence (OR 1.05, 1.04-1.06) and valuing quality of life (OR 3.11, 2.89-3.36) were associated with dying at home. There was a mismatch between preferences and achievements - of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference. Conclusion: Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply 'achieved preferences'.

Citation

Higginson, I. J., Bennett, E., Daveson, B. A., Cooper, F., Morrison, R. S., Yi, D., …Wei, G. (2017). Social and clinical determinants of preferences and their achievement at the end of life: Prospective cohort study of older adults receiving palliative care in three countries. BMC Geriatrics, 17(1), https://doi.org/10.1186/s12877-017-0648-4

Journal Article Type Article
Acceptance Date Oct 19, 2017
Online Publication Date Nov 23, 2017
Publication Date Nov 23, 2017
Deposit Date Jun 17, 2018
Publicly Available Date Jun 19, 2018
Journal BMC Geriatrics
Print ISSN 1471-2318
Electronic ISSN 1471-2318
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 17
Issue 1
DOI https://doi.org/10.1186/s12877-017-0648-4
Keywords Palliative care; End-of-life care; Preferences; Place of death; Home; Hospice; Hospital; Ageing; Elderly
Public URL https://hull-repository.worktribe.com/output/882007
Copyright Statement This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Additional Information Copy of article first published in: BMC Geriatrics, 2017, v.17, issue 1.

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Copyright Statement
This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.





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