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
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Dementia is a progressive irreversible condition characterised by impairments in memory, reasoning and communication skills that compromise decision-making capacity. Family or other informal carers are often required to inform or make complex health decisions on behalf of a person with dementia. However, carers may be unaware of the preferences of the person with dementia.1 To promote the delivery of person-centred dementia care, the participation of people with dementia in advance care planning is recommended.2
Advance care planning is an ongoing process ‘that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care’.3 It can include discussions about values and preferences with loved ones, healthcare providers, or the completion of written documents recording preferences or appointing a medical substitute decision maker. Advance care planning can improve communication between patients (while they retain capacity), carers and healthcare providers, and improve concordance between preferred and actual care.4
Despite widespread recognition of the importance of advance care planning for people with dementia, few studies have examined their levels of engagement in advance care planning. Rates of engagement vary widely from 5.2% to 92% among individuals with dementia living in the community5 6 and up to 66% among those residing in residential aged care facilities.7 These discrepant findings highlight the need for further information about the participation of people with dementia in advance care planning across different contexts.
To fully realise the benefits of advance care planning, ideally an advance care directive containing written values or instructions should be available at the point of care to inform decision making.8 In a recent study of older Australians, while 54% self-reported completion of documentation, only 48% had documentation in their health record.8 No previous studies have examined concordance between self-reported advance care planning and the presence of advance care directives at the place of medical care among people with dementia. These data are critical to identify gaps in care with regard to the acceptability and feasibility of advance care planning engagement for Australians with dementia.
To describe among individuals with dementia:
Self-reported awareness of, and engagement in, advance care planning.
Presence of advance care planning documentation in the health record.
Concordance between self-reported completion of advance care planning documentation with the presence of documentation in the health record.
This study is part of a larger study describing the prevalence of advance care planning in selected hospitals, residential aged care facilities and general practices. The protocol and full results are published elsewhere.8–10 This study focused on individuals with dementia.
Design and setting
A multicentre audit of facility-held health records and a cross-sectional survey.
Individuals aged ≥65 years (≥50 years Aboriginal or Torres Strait Islander people). Participants from hospitals and aged care facilitates needed to be admitted for ≥48 hours prior to the audit and were randomly selected for participation. In general practice, consecutive patients visiting on the day(s) of the audit were included.
Individuals whose records were audited and they spoke English, had decision-making capacity (judged by a healthcare provider) and were not too unwell or expected to die <24 hours.
Data were collected between September 2017 and January 2018.
A trained auditor examined paper or electronic health records at each facility. Demographic and clinical information, including a dementia diagnosis, was extracted from records.
Participants who provided written consent completed either an electronic survey on a touchscreen computer or a pen-and-paper survey.
An individual was deemed to have completed advance care planning if the auditor found in their health record within 15 min (1) an advance care directive recording preferences for care; (2) an advance care directive appointing a substitute decision maker or (3) any other documentation written by the person about their preferences for medical care.8
Participants provided responses to demographic questions. Participants were asked about their awareness of advance care planning; whether they had discussed advance care planning; whether they had written down their goals, values, beliefs or preferences (and if so, where this document was kept); and whether they had signed a legal document to appoint a substitute decision maker.
Analyses were conducted in SPSS Version 25 (IBM). Descriptive statistics were used to present demographic characteristics using counts and percentages. Chi-square tests were used to determine differences between survey completers and non-completers. Concordance between advance care planning documentation by self-report and identification in health records was determined through calculation of Cohen’s κ and prevalence-adjusted bias-adjusted κ). For self-reported advance care planning documentation, the response ‘I don’t know’ was coded as ‘No’.
Of 2285 records audited, 719 people had dementia. Of these, 579 (80.5%) were not eligible to participate in the survey, primarily as they lacked decision-making capacity (n=575). Of those eligible, 52 consented to survey participation (37%). Survey completers were significantly more likely to reside in Victoria than non-completers (p≤0.001). There were no statistically significant differences in survey completion with regards to age, gender or setting of recruitment. The online supplemental file 1 presents the sociodemographic characteristics of the sample. The average age of participants was 81.8 years, and 92% of participants resided in aged care facilities.
Table 1 provides data about participation in advance care planning. Overall, 31 participants (59.6%) had heard about advance care planning. Twenty-nine participants (55.8%) had discussed advance care planning with someone, most often family (48.1%). Fourteen (26.9%) participants reported writing down goals, values and beliefs, and 20 (38.5%) reported appointing a substitute decision maker.
Advance care planning documentation was located in the health records of 20 (38.5%) survey participants (table 2). Concordance between self-reported and audit-identified advance care planning was low (56.8%, κ=0.139, PABAK 0.154; and 57.7%, κ=0.053, PABAK 0.154). Of 24 people who self-reported documentation, 11 (46%) had documentation in their record. Nine participants (17.3%) who reported not completing advance care planning documentation had documentation in their health record.
Overall, 40% of participants had not heard of advance care planning. Lack of awareness and knowledge is a common barrier to advance care planning for people with dementia and older adults generally.11 As individuals with dementia may have a shorter time frame for meaningful advance care planning engagement, this is an important gap in dementia care.
Higher rates of self-reported discussion about advance care planning with family compared with health professionals are consistent with the existing literature.12 However, only 38.5% of participants had advance care planning documentation in their health records. This is higher than the 29.8% reported in the larger multicentre audit of older adults from which this sample is drawn.9 This may reflect the significant proportion of our sample from aged care facilities, where advance care planning is increasingly promoted at admission.13 However, this rate is lower than the larger cohort (n=719) of persons with dementia from which our sample is drawn, which found 46.9% had one or more advance care directives.14 Given the high risk that people with dementia will lose decision-making capacity, approaches to improve advance care planning uptake are essential. Early initiation of advance care planning, education/training for healthcare providers, and adoption of shared decision-making and case-management approaches are advocated to overcome the challenges of implementing advance care planning with people with dementia.2 11
Concordance between self-reported completion of advance care planning and documentation in facility records was low (57%), and slightly lower than the overall concordance rate reported for older adults without dementia (64%), and for participants from aged care facilities (66%) in the larger study sample.8 This is not unexpected, given that our sample included individuals experiencing cognitive decline. Interestingly, a similar number of participants in both samples who reported not completing advance care planning had documentation in their record. Initiatives that promote a systematic approach to preparing and storing advance care planning documents that are accessible and can be shared across healthcare sectors are needed.8
Study findings should be considered in light of several limitations. The sample was small, primarily comprised residents of residential facilities, and participants without decision-making capacity were excluded, limiting the generalisability of findings. As residents of aged care facilities are more likely to have engaged in advance care planning than community-dwelling older adults,9 our data likely do not provide an accurate estimate of the prevalence of advance care planning by community-dwelling people with dementia. The sample also primarily comprised women (71%) and 65.4% of participants were from one Australian state. While the small sample size precluded examination of sociodemographic differences in engagement in advance care planning or concordance, other research has found that women are more likely to formally appoint someone to make medical decisions on their behalf15 and that engagement in advance care planning varies by state.9
Given individuals with dementia experience cognitive decline leading to an eventual loss of decision-making capacity, effective models that promote discussion, documentation and accessible storage of advance care planning documents for people with dementia are needed.
Patient consent for publication
The study was approved by the Austin Health Human Research Ethics Committee (HREC/17/Austin/83).
The authors gratefully acknowledge the support and contribution of the National Prevalence Study Advisory Group, Sue Evan’s contribution to development of the study protocol, and the study coordinators and data collectors at each participating site.
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.
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