Please use this identifier to cite or link to this item:
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.
Austin Authors: Sellars, Marcus ;Chung, Olivia;Nolte, Linda ;Tong, Allison;Pond, Dimity;Fetherstonhaugh, Deirdre;McInerney, Fran;Sinclair, Craig;Detering, Karen M 
Affiliation: Advance Care Planning Australia, Austin Health, Heidelberg, Victoria, Australia
Sydney Medical School, The University of Sydney, Sydney, NSW, Australia
Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia
School of Medicine and Public Health (General Practice), The University of Newcastle, Callaghan, NSW, Australia
Australian Centre for Evidence Based Aged Care, La Trobe University, Melbourne, Victoria, Australia
Wicking Dementia Research and Education Centre, College of Health and Medicine, University of Tasmania, Hobart, TAS, Australia
Rural Clinical School of Western Australia, University of Western Australia, Albany, WA, Australia
Faculty of Medicine, Dentistry and Health Science, University of Melbourne, Melbourne, Victoria, Australia
Issue Date: 2019 2018-11-08
Publication information: Palliative medicine 2019; 33(3): 274-290
Abstract: 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. This study aims to describe the perspectives of people with dementia and their carers on advance care planning and end-of-life care. Systematic review and thematic synthesis of qualitative studies. Electronic databases were searched from inception to July 2018. 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). 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.
DOI: 10.1177/0269216318809571
ORCID: 0000-0002-8299-0313
PubMed URL: 30404576
Type: Journal Article
Subjects: Dementia
advance care planning
qualitative research
systematic review
Appears in Collections:Journal articles

Show full item record

Page view(s)

checked on Dec 2, 2022

Google ScholarTM


Items in AHRO are protected by copyright, with all rights reserved, unless otherwise indicated.