Cargando…

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

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 p...

Descripción completa

Detalles Bibliográficos
Autores principales: Sellars, Marcus, Chung, Olivia, Nolte, Linda, Tong, Allison, Pond, Dimity, Fetherstonhaugh, Deirdre, McInerney, Fran, Sinclair, Craig, Detering, Karen M
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6376607/
https://www.ncbi.nlm.nih.gov/pubmed/30404576
http://dx.doi.org/10.1177/0269216318809571
_version_ 1783395588546494464
author Sellars, Marcus
Chung, Olivia
Nolte, Linda
Tong, Allison
Pond, Dimity
Fetherstonhaugh, Deirdre
McInerney, Fran
Sinclair, Craig
Detering, Karen M
author_facet Sellars, Marcus
Chung, Olivia
Nolte, Linda
Tong, Allison
Pond, Dimity
Fetherstonhaugh, Deirdre
McInerney, Fran
Sinclair, Craig
Detering, Karen M
author_sort Sellars, Marcus
collection PubMed
description 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.
format Online
Article
Text
id pubmed-6376607
institution National Center for Biotechnology Information
language English
publishDate 2018
publisher SAGE Publications
record_format MEDLINE/PubMed
spelling pubmed-63766072019-03-16 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 Sellars, Marcus Chung, Olivia Nolte, Linda Tong, Allison Pond, Dimity Fetherstonhaugh, Deirdre McInerney, Fran Sinclair, Craig Detering, Karen M Palliat Med Review Articles 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. SAGE Publications 2018-11-08 2019-03 /pmc/articles/PMC6376607/ /pubmed/30404576 http://dx.doi.org/10.1177/0269216318809571 Text en © The Author(s) 2018 http://creativecommons.org/licenses/by/4.0/ This article is distributed under the terms of the Creative Commons Attribution 4.0 License (http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Review Articles
Sellars, Marcus
Chung, Olivia
Nolte, Linda
Tong, Allison
Pond, Dimity
Fetherstonhaugh, Deirdre
McInerney, Fran
Sinclair, Craig
Detering, Karen M
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Review Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6376607/
https://www.ncbi.nlm.nih.gov/pubmed/30404576
http://dx.doi.org/10.1177/0269216318809571
work_keys_str_mv AT sellarsmarcus perspectivesofpeoplewithdementiaandcarersonadvancecareplanningandendoflifecareasystematicreviewandthematicsynthesisofqualitativestudies
AT chungolivia perspectivesofpeoplewithdementiaandcarersonadvancecareplanningandendoflifecareasystematicreviewandthematicsynthesisofqualitativestudies
AT noltelinda perspectivesofpeoplewithdementiaandcarersonadvancecareplanningandendoflifecareasystematicreviewandthematicsynthesisofqualitativestudies
AT tongallison perspectivesofpeoplewithdementiaandcarersonadvancecareplanningandendoflifecareasystematicreviewandthematicsynthesisofqualitativestudies
AT ponddimity perspectivesofpeoplewithdementiaandcarersonadvancecareplanningandendoflifecareasystematicreviewandthematicsynthesisofqualitativestudies
AT fetherstonhaughdeirdre perspectivesofpeoplewithdementiaandcarersonadvancecareplanningandendoflifecareasystematicreviewandthematicsynthesisofqualitativestudies
AT mcinerneyfran perspectivesofpeoplewithdementiaandcarersonadvancecareplanningandendoflifecareasystematicreviewandthematicsynthesisofqualitativestudies
AT sinclaircraig perspectivesofpeoplewithdementiaandcarersonadvancecareplanningandendoflifecareasystematicreviewandthematicsynthesisofqualitativestudies
AT deteringkarenm perspectivesofpeoplewithdementiaandcarersonadvancecareplanningandendoflifecareasystematicreviewandthematicsynthesisofqualitativestudies