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

Marcus Sellars, Olivia Chung, Linda Nolte, Allison Tong, Dimity Pond, Deirdre Fetherstonhaugh, Fran McInerney, Craig Sinclair, Karen M Detering, Marcus Sellars, Olivia Chung, Linda Nolte, Allison Tong, Dimity Pond, Deirdre Fetherstonhaugh, Fran McInerney, Craig Sinclair, Karen M Detering

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.

Keywords: Dementia; advance care planning; carers; end-of-life; qualitative research; systematic review.

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Figures

Figure 1.
Figure 1.
Search results. ACP: advance care planning; EOL: end-of-life; QoL: quality of life.
Figure 2.
Figure 2.
Thematic schema of people with dementia and carer’s perspectives of ACP and end-of-life care. For people with dementia and their carers, ACP and end-of-life care was characterised by a sense of uncertainty in decision-making. ACP required some to confront emotionally difficult conversations and some carers felt unprepared in the act of adhering to ACP preferences and making end-of-life decisions on behalf of the person with dementia. In addition, a lack of confidence in healthcare settings contributed to carer uncertainty while they navigated existential tensions nearing death. To overcome these challenges, people with dementia and their carers expressed needs and conditions to avoid dehumanising treatment and care.

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