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Original research
Inadequate completion of advance care directives by individuals with dementia: national audit of health and aged care facilities
  1. Jamie Bryant1,2,3,
  2. Marcus Sellars4,5,
  3. Craig Sinclair6,7,8,
  4. Karen Detering4,9,
  5. Kimberly Buck4,
  6. Amy Waller1,2,3,
  7. Ben White5 and
  8. Linda Nolte4
  1. 1 Health Behaviour Research Collaborative, School of Medicine and Public Health, Faculty of Health and Medicine, The University of Newcastle, Callaghan, New South Wales, Australia
  2. 2 Priority Research Centre for Health Behaviour, University of Newcastle, Callaghan, New South Wales, Australia
  3. 3 Hunter Medical Research Institute, New Lambton Heights, NSW, Australia
  4. 4 Advance Care Planning Australia, Austin Health, Heidelberg, Victoria, Australia
  5. 5 Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology, Brisbane, Queensland, Australia
  6. 6 School of Psychology, University of New South Wales, Sydney, New South Wales, Australia
  7. 7 Australian Research Council Centre of Excellence in Population Ageing Research, University of New South Wales, Sydney, New South Wales, Australia
  8. 8 Neuroscience Research Australia (NeuRA), Sydney, New South Wales, Australia
  9. 9 Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Parkville, Victoria, Australia
  1. Correspondence to Dr Jamie Bryant, School of Medicine and Public Health, Health Behaviour Research Collaborative, The University of Newcastle, Callaghan, NSW 2308, Australia; jamie.bryant{at}newcastle.edu.au

Abstract

Objectives (i) Describe the prevalence and type of advance care directives (ACDs) and other advance care planning (ACP) documentation completed by persons with dementia, healthcare providers and others on behalf of a person with dementia; (ii) identify the personal and ACP programme characteristics associated with having ACP documentation in the health record; (iii) identify the personal and ACP programme characteristics associated with having a self-completed ACD.

Methods A multicentre audit was undertaken in Australian hospitals, general practices and residential aged care facilities. Auditors extracted demographic and ACP data from the records of eligible patients. ACP programme characteristics were provided by a site representative. Logistic and multinomial regression were used respectively to examine the factors associated with completion of any ACP documentation, and self-completion of an ACD by persons with dementia.

Results A total of 1388 people with dementia (33.2%) from 96 sites were included. Overall, 60.8% (n=844) had ACP documentation; 31.6% (n=438) had a self-completed ACD and 29.3% (n=406) had an ACP document completed by a health professional or someone else on their behalf. Older participants were more likely to have ACP documented. Multivariate analyses indicated the odds of having self-completed ACP documents, compared with no advance care plan or ACP completed by someone else, were significantly influenced by age, country of birth, setting and whether the site had ACP training, policies or guidelines.

Discussion While 60% of people with dementia had some form of ACP documentation, only half of the cases in which ACP was documented included an ACD completed by the person themselves.

  • end of life care
  • clinical decisions
  • terminal care

Data availability statement

The datasets used and/or analysed for this study are available from the corresponding author upon reasonable request.

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-2020-002767

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    Data availability statement

    The datasets used and/or analysed for this study are available from the corresponding author upon reasonable request.

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    Footnotes

    • Contributors JB was involved in development of the data analysis plan, interpretation of data and drafting the manuscript. MS was involved in data analysis, data interpretation and drafting the manuscript. CS was involved in design, data interpretation and drafting the manuscript. KD was involved in conception, design, data acquisition, data interpretation and critically revising the manuscript. KB was involved in the design, data acquisition and critically revising the manuscript. AW was involved in development of the data analysis plan, interpretation of data and drafting the manuscript. BW was involved in design, data interpretation and critically revising the manuscript. LN was involved in conception, design, data acquisition and interpretation and critically revising the manuscript. All authors have read and approved the final manuscript.

    • Funding This research was funded by the Australian Government Department of Health. JB is supported by a NHMRC-ARC Dementia Research Development Fellowship.

    • Competing interests None declared.

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