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]
|PDF (Published version)|
Copyright 2018 The Authors Licensed under Creative Commons Attribution 4.0 International (CC BY 4.0) https://creativecommons.org/licenses/by/4.0/
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:||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 Group:||Provision of health and support services|
|Objective Field:||Palliative care|
|UTAS Author:||McInerney, F (Professor Fran McInerney)|
|Web of Science® Times Cited:||40|
|Deposited By:||Wicking Dementia Research and Education Centre|
|Downloads:||18 View Download Statistics|
Repository Staff Only: item control page