Advance care planning participation by people with dementia: A cross-sectional survey and medical record audit

Jamie Bryant, Marcus Sellars, Amy Waller, Karen Detering, Craig Sinclair, Rasa Ruseckaite, Ben White, Linda Nolte

Research output: Contribution to journalArticleResearchpeer-review

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.

Original languageEnglish
Number of pages5
JournalBMJ Supportive and Palliative Care
DOIs
Publication statusAccepted/In press - 3 Mar 2021

Keywords

  • quality of life
  • terminal care

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