- 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
- Creator
- Sellars, Marcus; Chung, Olivia; Nolte, Linda; Tong, Allison; Pond, Dimity; Fetherstonhaugh, Deirdre; McInerney, Fran; Sinclair, Craig; Detering, Karen M.
- Relation
- Palliative Medicine Vol. 33, Issue 3, p. 274-290
- Publisher Link
- http://dx.doi.org/10.1177/0269216318809571
- Publisher
- Sage
- Resource Type
- journal article
- Date
- 2019
- 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.
- Subject
- dementia; advance care planning; carers; qualitative research; end-of-life; systematic review
- Identifier
- http://hdl.handle.net/1959.13/1418854
- Identifier
- uon:37399
- Identifier
- ISSN:0269-2163
- Rights
- 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).
- Language
- eng
- Full Text
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