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

Research output: Contribution to journalReview article

2 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)274-290
Number of pages17
JournalPalliative Medicine
Volume33
Issue number3
DOIs
Publication statusPublished - 1 Mar 2019

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Advance Care Planning
Terminal Care
Caregivers
Dementia
Decision Making
Medical Futility
Institutionalization
Personal Autonomy
Hospices
Information Storage and Retrieval
Uncertainty
Fear
Cause of Death
Chronic Disease
Therapeutics
Databases
Delivery of Health Care
Health

Cite this

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. In: Palliative Medicine. 2019 ; Vol. 33, No. 3. pp. 274-290.
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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.

In: Palliative Medicine, Vol. 33, No. 3, 01.03.2019, p. 274-290.

Research output: Contribution to journalReview article

TY - JOUR

T1 - Perspectives of people with dementia and carers on advance care planning and end-of-life care

T2 - A systematic review and thematic synthesis of qualitative studies

AU - Sellars, Marcus

AU - Chung, Olivia

AU - Nolte, Linda

AU - Tong, Allison

AU - Pond, Dimity

AU - Fetherstonhaugh, Deirdre

AU - McInerney, Fran

AU - Sinclair, Craig

AU - Detering, Karen M.

PY - 2019/3/1

Y1 - 2019/3/1

N2 - 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.

AB - 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.

KW - advance care planning

KW - carers

KW - Dementia

KW - end-of-life

KW - qualitative research

KW - systematic review

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U2 - 10.1177/0269216318809571

DO - 10.1177/0269216318809571

M3 - Review article

VL - 33

SP - 274

EP - 290

JO - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

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