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Advance care planning participation by people with dementia: a cross-sectional survey and medical record audit
  1. Jamie Bryant1,2,
  2. Marcus Sellars3,
  3. Amy Waller1,2,
  4. Karen Detering3,4,
  5. Craig Sinclair5,6,
  6. Rasa Ruseckaite7,
  7. Ben White8 and
  8. Linda Nolte3
  1. 1 Health Behaviour Research Collaborative,School of Medicine and Public Health, The University of Newcastle, Callaghan, New South Wales, Australia
  2. 2 School of Medicine and Public Health, Health Behaviour Research Collaborative, The University of Newcastle, Callaghan, New South Wales, Australia
  3. 3 Advance Care Planning Australia, Austin Health, Melbourne, Victoria, Australia
  4. 4 School of Medicine and Public Health, University of Newcastle, Callaghan, New South Wales, Australia
  5. 5 Centre of Excellence in Population Ageing Research, University of New South Wales, Sydney, New South Wales, Australia
  6. 6 Neuroscience Research Australia, Randwick, New South Wales, Australia
  7. 7 Department of Epidemiology and Preventive Medicine, Monash University, Clayton, Victoria, Australia
  8. 8 Australian Centre for Health Law Research, Queensland University of Technology, Brisbane, Queensland, Australia
  1. Correspondence to Dr Jamie Bryant, School of Medicine and Public Health, Health Behaviour Research Collaborative, The University of Newcastle, Callaghan, New South Wales NSW 2308, Australia; jamie.bryant{at}newcastle.edu.au

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.

  • quality of life
  • terminal care
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

http://dx.doi.org/10.1136/bmjspcare-2020-002550

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    Footnotes

    • Contributors JB was involved in development of the data analysis plan, interpretation of data, and drafting the manuscript. She is responsible for the overall content as guarantor. MS was involved in data analysis, data interpretation, and critically revising the manuscript. AW was involved in development of the data analysis plan, interpretation of data, and drafting the manuscript. KD and LN were involved in conception, design, data acquisition, data interpretation and critically revising the manuscript. CS was involved in design, data interpretation and critically revising the manuscript. RR was involved in the design, data acquisition and critically revising the manuscript. BW: was involved in design, data interpretation and critically revising the manuscript. All authors have read and approved the final manuscript.

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

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.