Advance Care Planning Participation by People With Dementia: A Cross-Sectional Survey and Medical Record Audit

Bryant J, Sellars M, Waller A, et al. BMJ Supportive & Palliative Care Epub ahead of print: [please include Day Month Year]. doi:10.1136/ bmjspcare-2020-002550

6 Pages Posted: 4 Aug 2021

See all articles by Jamie Bryant

Jamie Bryant

The University of Newcastle - School of Medicine and Public Health, Health Behaviour Research Collaborative

Marcus Sellars

Independent

Amy Waller

Independent

Karen Detering

Austin Health

Craig Sinclair

University of New South Wales (UNSW) - ARC Centre of Excellence in Population Ageing Research (CEPAR)

Rasa Ruseckaite

Monash University - Institute for Safety - Compensation and Recovery Research

Ben White

Queensland University of Technology - Faculty of Law

Linda Nolte

Austin Health

Date Written: July 9, 2021

Abstract

Objectives To describe among individuals with dementia: (1) self-reported awareness of, and engagement in, advance care planning; (2) presence of advance care planning documentation in the health record and (3) concordance between self-reported completion of advance care planning and presence of documentation in the health record.

Methods: An Australian prospective multicentre audit and cross-sectional survey. Individuals diagnosed with dementia who were able to speak English and were judged by a healthcare provider as having decision-making capacity were recruited from self-selected hospitals, residential aged care facilities and general practices across Australia.

Results: Fifty-two people with dementia completed surveys and were included. Overall, 59.6% of participants had heard about advance care planning and 55.8% had discussed advance care planning with someone, most often a family member (48.1%). While 38.5% of participants had appointed a medical substitute decision maker, only 26.9% reported that they had written down their values and preferences for future care. Concordance between self-reported completion of advance care planning and presence of documentation in the health record was low (56.8%, κ=0.139; 57.7%, κ=0.053).

Conclusion: Effective models that promote discussion, documentation and accessible storage of advance care planning documents for people with dementia are needed.

Note: Funding: This work was supported by the Australian Government Department of Health.

Declaration of Interests: None declared.

Ethics Approval Statement: The study was approved by the Austin Health Human Research Ethics Committee (HREC/17/Austin/83).

Suggested Citation

Bryant, Jamie and Sellars, Marcus and Waller, Amy and Detering, Karen and Sinclair, Craig and Ruseckaite, Rasa and White, Ben and Nolte, Linda, Advance Care Planning Participation by People With Dementia: A Cross-Sectional Survey and Medical Record Audit (July 9, 2021). Bryant J, Sellars M, Waller A, et al. BMJ Supportive & Palliative Care Epub ahead of print: [please include Day Month Year]. doi:10.1136/ bmjspcare-2020-002550, Available at SSRN: https://ssrn.com/abstract=3883721

Jamie Bryant (Contact Author)

The University of Newcastle - School of Medicine and Public Health, Health Behaviour Research Collaborative ( email )

Australia

Marcus Sellars

Independent ( email )

Amy Waller

Independent ( email )

Karen Detering

Austin Health ( email )

145 Studley Rd
Heidelberg VIC 3084, Melbourne
Australia

Craig Sinclair

University of New South Wales (UNSW) - ARC Centre of Excellence in Population Ageing Research (CEPAR) ( email )

Kensington
High St
Sydney, NSW 2052
Australia

Rasa Ruseckaite

Monash University - Institute for Safety - Compensation and Recovery Research ( email )

23 Innovation Walk
Wellington Road
Clayton, Victoria 3800
Australia

Ben White

Queensland University of Technology - Faculty of Law ( email )

Level 4, C Block Gardens Point
2 George St
Brisbane, QLD 4000
Australia

HOME PAGE: http://staff.qut.edu.au/staff/whiteb/

Linda Nolte

Austin Health ( email )

145 Studley Rd
Heidelberg VIC 3084, Melbourne
Australia

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