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Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies

Citation

Sellars, M and Chung, O and Nolte, L and Tong, A and Pond, D and Fetherstonhaugh, D and McInerney, F and Sinclair, C and Detering, KM, Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies, Palliative Medicine, 33, (3) pp. 274-290. ISSN 0269-2163 (2018) [Refereed Article]


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Copyright Statement

Copyright 2018 The Authors Licensed under Creative Commons Attribution 4.0 International (CC BY 4.0) https://creativecommons.org/licenses/by/4.0/

DOI: doi:10.1177/0269216318809571

Abstract

Background: Advance care planning aims to ensure that care received during serious and chronic illness is consistent with the person’s values, preferences and goals. However, less than 40% of people with dementia undertake advance care planning internationally.

Aim: This study aims to describe the perspectives of people with dementia and their carers on advance care planning and end-of-life care.

Design: Systematic review and thematic synthesis of qualitative studies.

Data sources: Electronic databases were searched from inception to July 2018.

Results: From 84 studies involving 389 people with dementia and 1864 carers, five themes were identified: avoiding dehumanising treatment and care (remaining connected, delaying institutionalisation, rejecting the burdens of futile treatment); confronting emotionally difficult conversations (signifying death, unpreparedness to face impending cognitive decline, locked into a pathway); navigating existential tensions (accepting inevitable incapacity and death, fear of being responsible for cause of death, alleviating decisional responsibility); defining personal autonomy (struggling with unknown preferences, depending on carer advocacy, justifying treatments for health deteriorations); and lacking confidence in healthcare settings (distrusting clinicians’ mastery and knowledge, making uninformed choices, deprived of hospice access and support at end of life).

Conclusion: People with dementia and their carers felt uncertain in making treatment decisions in the context of advance care planning and end-of-life care. Advance care planning strategies that attend to people’s uncertainty in decision-making may help to empower people with dementia and carers and strengthen person-centred care in this context.

Item Details

Item Type:Refereed Article
Keywords:dementia, advance care planning, carers, qualitative research, end-of-life, systematic review
Research Division:Health Sciences
Research Group:Health services and systems
Research Field:Aged health care
Objective Division:Health
Objective Group:Provision of health and support services
Objective Field:Palliative care
UTAS Author:McInerney, F (Professor Fran McInerney)
ID Code:129217
Year Published:2018
Web of Science® Times Cited:26
Deposited By:Wicking Dementia Research and Education Centre
Deposited On:2018-11-15
Last Modified:2021-05-27
Downloads:12 View Download Statistics

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