Open Access Repository

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

Downloads

Downloads per month over past year

Sellars, M, Chung, O, Nolte, L, Tong, A, Pond, D, Fetherstonhaugh, D, McInerney, F ORCID: 0000-0003-1781-402X, Sinclair, C and Detering, KM 2018 , '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 , pp. 1-17 , doi: 10.1177/0269216318809571.

[img]
Preview
PDF
129217.pdf | Download (909kB)

| Preview

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 Type: Article
Authors/Creators: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
Keywords: dementia, advance care planning, carers, qualitative research, end-of-life, systematic review
Journal or Publication Title: Palliative Medicine
Publisher: Arnold
ISSN: 0269-2163
DOI / ID Number: 10.1177/0269216318809571
Copyright Information:

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

Related URLs:
Item Statistics: View statistics for this item

Actions (login required)

Item Control Page Item Control Page
TOP