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Advance care planning participation by people with dementia: a cross-sectional survey and medical record audit.
BMJ Support Palliat Care. 2021 Mar 03 [Online ahead of print]BS

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.

Authors+Show Affiliations

Health Behaviour Research Collaborative,School of Medicine and Public Health, The University of Newcastle, Callaghan, New South Wales, Australia jamie.bryant@newcastle.edu.au. School of Medicine and Public Health, Health Behaviour Research Collaborative, The University of Newcastle, Callaghan, New South Wales, Australia.Advance Care Planning Australia, Austin Health, Melbourne, Victoria, Australia.Health Behaviour Research Collaborative,School of Medicine and Public Health, The University of Newcastle, Callaghan, New South Wales, Australia. School of Medicine and Public Health, Health Behaviour Research Collaborative, The University of Newcastle, Callaghan, New South Wales, Australia.Advance Care Planning Australia, Austin Health, Melbourne, Victoria, Australia. School of Medicine and Public Health, University of Newcastle, Callaghan, New South Wales, Australia.Centre of Excellence in Population Ageing Research, University of New South Wales, Sydney, New South Wales, Australia. Neuroscience Research Australia, Randwick, New South Wales, Australia.Department of Epidemiology and Preventive Medicine, Monash University, Clayton, Victoria, Australia.Australian Centre for Health Law Research, Queensland University of Technology, Brisbane, Queensland, Australia.Advance Care Planning Australia, Austin Health, Melbourne, Victoria, Australia.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

33658249

Citation

Bryant, Jamie, et al. "Advance Care Planning Participation By People With Dementia: a Cross-sectional Survey and Medical Record Audit." BMJ Supportive & Palliative Care, 2021.
Bryant J, Sellars M, Waller A, et al. Advance care planning participation by people with dementia: a cross-sectional survey and medical record audit. BMJ Support Palliat Care. 2021.
Bryant, J., Sellars, M., Waller, A., Detering, K., Sinclair, C., Ruseckaite, R., White, B., & Nolte, L. (2021). Advance care planning participation by people with dementia: a cross-sectional survey and medical record audit. BMJ Supportive & Palliative Care. https://doi.org/10.1136/bmjspcare-2020-002550
Bryant J, et al. Advance Care Planning Participation By People With Dementia: a Cross-sectional Survey and Medical Record Audit. BMJ Support Palliat Care. 2021 Mar 3; PubMed PMID: 33658249.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Advance care planning participation by people with dementia: a cross-sectional survey and medical record audit. AU - Bryant,Jamie, AU - Sellars,Marcus, AU - Waller,Amy, AU - Detering,Karen, AU - Sinclair,Craig, AU - Ruseckaite,Rasa, AU - White,Ben, AU - Nolte,Linda, Y1 - 2021/03/03/ PY - 2020/07/06/received PY - 2020/11/26/revised PY - 2020/12/01/accepted PY - 2021/3/4/entrez PY - 2021/3/5/pubmed PY - 2021/3/5/medline KW - quality of life KW - terminal care JF - BMJ supportive & palliative care JO - BMJ Support Palliat Care N2 - 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. SN - 2045-4368 UR - https://www.unboundmedicine.com/medline/citation/33658249/Advance_care_planning_participation_by_people_with_dementia:_a_cross_sectional_survey_and_medical_record_audit_ L2 - https://spcare.bmj.com/lookup/pmidlookup?view=long&pmid=33658249 DB - PRIME DP - Unbound Medicine ER -
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