Organisational and advance care planning program characteristics associated with advance care directive completion: a prospective multicentre cross-sectional audit among health and residential aged care services caring for older Australians.

BACKGROUND: Advance care planning (ACP) and advance care directive (ACD) completion improve outcomes for patients, family, clinicians and the healthcare system. However, uptake remains low. Despite increasing literature regarding organisational-level ACP characteristics leading to success, there is a lack of data measuring the impact of these factors on ACD prevalence. METHODS: A prospective multi-centre, cross-sectional audit of health records among older Australians accessing general practices (GP), hospitals and residential aged care facilities (RACF) was undertaken to describe organisational and ACP-program characteristics across services, document ACD prevalence, and assess organisation-level predictors of ACD prevalence. Organisational-level data included general and ACP-program characteristics. Patient/resident data included demographics and presence of ACDs. RESULTS: One hundred organisations (GP = 15, hospitals = 27, RACFs = 58) participated, contributing data from 4187 patient/resident health records. Median prevalence of ACDs across organisations was 19.4%, (range = 0-100%). In adjusted models, organisational sector type was the strongest predictor of ACD prevalence, with higher rates in RACFs (unadjusted 28.7%, adjusted 20.6%) than hospitals (unadjusted 6.4%, adjusted 5.8%) or GPs (unadjusted 2.5%, adjusted 6.6%). RACFs in regional and rural/remote areas had higher prevalence than metropolitan organisations. Organisations supported by government funding and those that were Not For Profit had higher prevalence than those that were privately funded, and organisations with an ACP program that had been implemented at least 3 years before data collection had higher prevalence than those with either no program or a more recent program. CONCLUSIONS: The median ACD prevalence was low, with substantial variation across organisations. Sector type was the strongest predictor, being highest in RACFs. Low prevalence rates, overall and in particular sectors, have implications for improvements. Further research into organisational factors associated with ACP/ACD completion is required.

Advance care directive prevalence among older Australians and associations with person-level predictors and quality indicators.

BACKGROUND: Advance care planning (ACP) conversations may result in preferences for medical care being documented. OBJECTIVE: To explore the uptake and quality of advance care directives (ACDs) among older Australians accessing health and aged care services, by overall ACP documentation prevalence, person-level predictors and ACD quality indicators. DESIGN AND SETTING: National multi-centre health record audit in general practices (GP), hospitals and residential aged care facilities (RACF). PARTICIPANTS: A total of 4187 people aged ≥65 years attending their GP (n = 676), admitted to hospital (n = 1122) or residing in a RACF (n = 2389). MAIN OUTCOME MEASURES: ACP documentation prevalence by setting and type including person-completed ACDs and non-ACD documents (completed by a health professional or someone else); person-level predictors and quality indicators of ACDs. RESULTS: Overall ACP documentation prevalence was 46.5% (29.2% weighted). ACD prevalence was 25.3% (14.2% weighted). Unweighted ACD prevalence was higher in RACFs (37.7%) than in hospitals (11.1%) and GPs (5.5%). 35.8% of ACP documentation was completed by a health professional (9.7% weighted), and 18.1% was completed by someone else (10.6% weighted). Having an ACD was positively associated with being female, older, having two or more medical conditions, receiving palliative care, being divorced/separated and being in a RACF. Only 73% of ACDs included full name, signature, document date and witnessing. CONCLUSIONS AND CONTRIBUTION: Low ACP documentation prevalence and a lack of accessible, person-completed and quality ACDs represent an important ACP implementation issue. Low prevalence is complicated by poor document quality and a higher prevalence of documents being completed by someone other than the person.

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

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.

Public knowledge, preferences and experiences about medical substitute decision-making: a national cross-sectional survey.

OBJECTIVE: To describe the Australian adult public's knowledge and experiences regarding substitute decision-making for medical decisions and their preferences for obtaining information about the substitute decision-maker (SDM) role. METHODS: This is a national cross-sectional online survey of the Australian adult public. The survey examined participants' advance care planning (ACP) awareness and experience, SDM experiences and preferences for obtaining more information about SDM, and participant knowledge about SDM. RESULTS: Of 1586 people who opened the survey, 1120 (70.6%) were included in the final sample. 13% (n=142) of participants indicated they had acted as an SDM. A median score of two correct responses out of five showed low to moderate knowledge about the SDM role among all participants, with only 33% reporting awareness of SDM laws existing in Australia. While most (59%) participants ranked a health professional as their preferred source of obtaining information about supporting SDMs, few participants who had been an SDM (n=64, 45%) reported obtaining any support in making medical decisions. The median SDM knowledge scores for people who had discussed ACP (3.0 vs 2.0, U=1 45 222, z=6.910, p<0.001), documented their ACP preferences (3.0 vs 2.0, U=71 984, z=4.087, p<0.001) or acted in the SDM role (3.0 vs 2.0, U=56 353, z=-3.694, p<0.001) were significantly higher compared with those who had not. CONCLUSIONS: The Australian public may have low to moderate knowledge about the SDM role and access only minimal support when making challenging medical decisions.

Systematic review and content analysis of Australian health care substitute decision making online resources.

Objective Substitute decision makers (SDMs) can be required to make difficult health care decisions on behalf of individuals lacking decision-making capacity. Online resources may be helpful in preparing and supporting SDMs. This study systematically explored the frequency, content and usability of Australian online resources containing health care substitute decision-making content written for consumers. Methods In April 2019, Google searches were conducted to identify online resources containing health care substitute decision-making content for consumers. Analysis comprised mapping resource characteristics, including target audience (individual-specific, SDM-specific, mixed) and thematic analysis of content. Usability was assessed using the Patient Education Materials Assessment Tool (PEMAT). Results Of the 61 resources identified, the most frequent were webpages (57%), individual-specific (43%) and those produced by government organisations (31%). Only 15 resources (24%) were written for SDMs. Content themes identified were: defining the scope of the SDM role (93%); recommended traits or characteristics of SDMs (80%); instructions or principles regarding standards for decision making (75%); duties of SDMs (70%); and supports (46%), rights (16%), barriers (8%) and benefits (5%) for SDMs. The median (interquartile range) PEMAT scores (out of 100) were 66 (27) for understandability and 60 (55) for actionability. Conclusions SDMs have a vital role in making decisions for people lacking decision-making capacity. Online resources are a potential source of information and support for SDMs in Australia. This study identified key gaps in availability, content and usability of existing SDM resources, highlighting the need for the further development of such resources. We suggest that future resource development include SDMs in the design and evaluation processes. What is known about the topic? An aging population and a greater need for decisions to be made on behalf of others who lack capacity means that health care substitute decision-making is occurring more frequently. Appointing one or more SDMs may occur as part of the advance care planning process. However, being a healthcare SDM can be difficult and stressful. People frequently use the Internet to search for health-related information. What does this paper add? This paper systematically examined the frequency, content and usability of existing Australian online resources with substitute decision-making content written for a consumer audience in English, and identified key gaps in online resources available to support SDMs. What are the implications for practitioners? Although there is a need for resources written for SDMs, authors of online resources need to pay careful attention to the purpose, content and usability of their resource. Future resource development should include input from SDMs and involve them in evaluation to assess whether the resources meet target audience needs.

Inadequate completion of advance care directives by individuals with dementia: national audit of health and aged care facilities.

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.

Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study.

PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia. METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey. RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region. CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.

Association Between Region of Birth and Advance Care Planning Documentation Among Older Australian Migrant Communities: A Multicenter Audit Study.

OBJECTIVES: This study explored associations between birth region, sociodemographic predictors, and advance care planning (ACP) uptake. METHODS: A prospective, multicenter, cross-sectional audit study of 100 sites across 8 Australian jurisdictions. ACP documentation was audited in the health records of people aged 65 years or older accessing general practice (GP), hospital, and long-term care facility (LTCF) settings. Advance care directives (ACDs) completed by the person ("person completed ACDs") and ACP documents completed by a health professional or other person ("health professional or someone else ACP") were counted. Hierarchical multilevel logistic regression assessed associations with birth region. RESULTS: From 4,187 audited records, 30.0% (1,152/3,839) were born outside Australia. "Person completed ACDs" were less common among those born outside Australia (21.9% vs 28.9%, X2 (1, N = 3,840) = 20.3, p < .001), while "health professional or someone else ACP" was more common among those born outside Australia (46.4% vs 34.8%, X2 (1, N = 3,840) = 45.5, p < .001). Strongest associations were found for those born in Southern Europe: "person completed ACD" (odds ratio [OR] = 0.56, 95% confidence interval [CI] = 0.36-0.88), and "health professional or someone else ACP" (OR = 1.41, 95% CI = 1.01-1.98). English-language proficiency and increased age significantly predicted both ACP outcomes. DISCUSSION: Region of birth is associated with the rate and type of ACP uptake for some older Australians. Approaches to ACP should facilitate access to interpreters and be sensitive to diverse preferences for individual and family involvement in ACP.

Prevalence of advance care planning documentation and self-reported uptake in older Australians with a cancer diagnosis.

BACKGROUND: Advance care planning (ACP) and completion advance care directives (ACDs) is recommended for patients with cancer. Documentation needs to be available at the point of care. OBJECTIVE(S): To describe the prevalence of ACDs in health records and the self-reported awareness of and engagement in ACP as reported by older Australians with cancer, and to examine the concordance between self-reported completion of and presence of documentation in participants' health records. DESIGN/SETTING/PARTICIPANTS: Prospective multi-center audit of health records, and a self-report survey of eligible participants in 51 Australian health and residential aged care services. The audit included 458 people aged ≥65 years with cancer. RESULTS: 30% had ≥ ACD located in their record. 218 people were eligible for survey completion; 97 (44% response rate) completed it. Of these, 81% had a preference to limit some/all treatments, 10% wanted to defer decision-making to someone else, and 9% wanted all treatments. Fifty-eight percent of survey completers reported having completed an ACP document. Concordance between documentation in the participant's record and self-report of completion was 61% (k = 0.269), which is only fair agreement. CONCLUSION(S): Whilst 30% of participants had at least one ACD in their record, 58% self-reported document completion, and concordance between self-reported completion and presence in records was only fair. This is significant given most people had a preference for some/all limitation of treatment. Further ACP implementation strategies are required. These include a systematic approach to embedding ACP into routine care, workforce education, increasing community awareness, and looking at e-health solutions to improve accessibility at the point of care.

Advance care planning in Australia during the COVID-19 outbreak: now more important than ever.

The novel Coronavirus disease 2019 (COVID-19) outbreak has led to rapid and profound changes in healthcare system delivery and society more broadly. Older adults, and those living with chronic or life-limiting conditions, are at increased risk of experiencing severe or critical symptoms associated with COVID-19 infection and are more likely to die. They may also experience non-COVID-19 related deterioration in their health status during this period. Advance care planning (ACP) is critical for this cohort, yet there is no coordinated strategy for increasing the low rates of ACP uptake in these groups, or more broadly. This paper outlines a number of key reasons why ACP is an urgent priority, and should form a part of the health system's COVID-19 response strategy. These include reducing the need for rationing, planning for surges in healthcare demand, respecting human rights, enabling proactive care coordination and leveraging societal change. We conclude with key recommendations for policy and practice in the system-wide implementation of ACP, to enable a more ethical, coordinated and person-centred response in the COVID-19 context.

Challenges in obtaining research ethics and governance approvals for an Australian national intersector, multisite audit study.

Objective The aim of this study was to describe timelines and challenges encountered in obtaining ethics and governance approvals for an Australian multicentre audit study involving 100 public (n=22) and private (n=78) sites from three health sectors and all eight Australian states and territories. Methods We determined and compared the processes, documentation and number of business days required to prepare applications and obtain research ethics and governance approvals. Results In total, the full ethics and governance process (calculated from the date the first application was started to the date the final approval was granted) took 203 business days (79% of the study timeline). Standard risk ethics applications (n=4) took a median of 17 business days (range 3-35 days) to prepare and 32 business days (range 17-67 days) to be approved; expedited ethics applications (n=4) took a median of 5 business days (range 1-20 days) to prepare and 10 business days (range 1-44 days) to be approved. Governance approvals (n=23) took a median of 27 business days (range 4-63 days) to prepare and 20 business days (range 4-61 days) to be approved. Challenges included the lack of a nationwide single-site ethical review process, the extensive time required to duplicate content across applications, variability in application requirements and submission systems, and contract negotiations. Conclusion Further improvements are needed to reduce duplication and increase the efficiency of Australian ethics and governance review processes. What is known about the topic? The process for obtaining ethics approval for multicentre research has been streamlined through the introduction of single-site ethics review. However, the process of gaining ethics and governance approvals for national multicentre research continues to be time-consuming, resource-intensive and duplicative. What does this paper add? This is the first study to examine the challenges of obtaining ethics and governance approvals for a non-interventional multicentre study involving three health sectors (hospital, aged care, general practice), both private and public services and all eight Australian jurisdictions. Previous examinations of Australian multicentre studies have considered only one health sector, focused on the public system and/or were not national in scope. What are the implications for practitioners? Researchers and funders need to be aware of the considerable time, resources and costs involved in gaining research ethics and governance approvals for multicentre studies and include this in budgets and study timelines. Policy makers and administrators of ethics and governance review processes must address barriers to conducting multicentre research in Australia.

Identifying barriers and facilitators to implementing advance care planning in prisons: a rapid literature review.

BACKGROUND: Limited information is available describing advance care planning (ACP) within correctional facilities, despite its increasing relevance due to the ageing population in prisons and the high rates of complex medical comorbidities. In Western countries, self-determination with respect to making future medical decisions is a human right that prisoners do not lose when they are remanded into custody. ACP enables individuals to plan for their health and personal care so their values, beliefs and preferences are made known to inform future decision-making, for a time when they can no longer communicate their decisions. This paper examines the limited academic literature relating to ACP within prisons to identify barriers and facilitators that influence the uptake of ACP and advance care directive (ACD) documentation. Common themes related to ACP in a correctional setting were extracted and synthesised to produce a high-level analysis of barriers and facilitators influencing ACP uptake for prisoners within a correctional setting. RESULTS: Six articles met the selection criteria and reported on the experience of ACP and ACDs in prisons; five from the United States of America and one from Switzerland. Three dominant themes were identified, with related subthemes: system-level factors, attitudes and perceptions, and ACP knowledge and comprehension. Barriers to ACP and ACD implementation were more prominent in articles than facilitators. CONCLUSIONS: Limited academic literature regarding the implementation and experience of ACP in prisons is available. The dominance of barriers identified in studies highlights key challenges for improving ACP uptake in correctional settings. Further research is required to understand the barriers, enablers, and attitudes to ACP in prisons.

Personal and Interpersonal Factors and Their Associations With Advance Care Planning Documentation: A Cross-sectional Survey of Older Adults in Australia.

CONTEXT: Personal and interpersonal factors may be influential in a person's decision to engage in advance care planning (ACP), including completion of ACP documentation. OBJECTIVES: To conduct a cross-sectional survey of older adults accessing Australian general practices, hospitals, and residential aged care facilities, with the aim of describing associations between personal and interpersonal factors and self-reported ACP documentation completion. METHODS: Eligible participants included in a national health record audit were approached to complete a survey measuring demographic and health characteristics, preferences for care, worries about the future, and experiences talking with others about ACP and completing ACP documentation. RESULTS: Of 1082 people eligible to participate in the survey, 507 completed the survey (response rate = 47%; median age 82 years) and 54% (n = 272) reported having completed ACP documentation. Having ever discussed ACP with other people (anyone) or a doctor were both significant predictors of ACP documentation completion, whereas having previously spoken specifically to a partner about ACP, currently living with children compared to living alone, and being aged 55-69 versus 90-99 years were associated with reduced odds of ACP documentation completion. CONCLUSION: Approximately half the participants reported having completed ACP documentation. The strongest predictor of ACP documentation completion was having spoken to anyone about ACP followed by having spoken to a doctor about ACP. These findings suggest that discussions about ACP are an important part of the process of completing ACP documentation.

Doctors' perspectives on adhering to advance care directives when making medical decisions for patients: an Australian interview study.

OBJECTIVE: Advance care planning (ACP) assists people to identify their goals, values and treatment preferences for future care. Ideally, preferences are documented in an advance care directive (ACD) and used by doctors to guide medical decision-making should the patient subsequently lose their decision-making capacity. However, studies demonstrate that ACDs are not always adhered to by doctors in clinical practice. We aim to describe the attitudes and perspectives of doctors regarding ACD adherence and the utility of ACDs in clinical practice. DESIGN: Face-to-face semistructured interviews were conducted using three case-based vignettes to explore doctors' decision-making and attitudes towards ACDs. Transcripts were analysed using a thematic analysis. SETTING: Doctors from a variety of medical specialties and with varying experience levels were recruited from a large tertiary hospital in Melbourne, Australia. PARTICIPANTS: A total of 21 doctors were interviewed, 48% female (10/21). Most (19/21) reported having experience using ACDs. RESULTS: Four themes were identified: aligning with patient preferences (avoiding unwanted care, prioritising autonomy and anticipating family opposition), advocating best interests (defining futile care, relying on clinical judgement, rejecting unreasonable decisions and disregarding legal consequences), establishing validity (doubting rigour of the decision-making process, questioning patients' ability to understand treatment decisions, distrusting outdated preferences and seeking confirmation) and translating written preferences into practice (contextualising patient preferences, applying subjective terminology and prioritising emergency medical treatment). CONCLUSIONS: ACDs provide doctors with opportunities to align patient preferences with treatment and uphold patient autonomy. However, doctors experience decisional conflict when attempting to adhere to ACDs in practice, especially when they believe that adhering to the ACD is not in the patients' best interests, or if they doubt the validity of the ACD. Future ACP programmes should consider approaches to improve the validity and applicability of ACDs. In addition, there is a need for ethical and legal education to support doctors' knowledge and confidence in ACP and enacting ACDs.

Prospective multicentre cross-sectional audit among older Australians accessing health and residential aged care services: protocol for a national advance care directive prevalence study.

INTRODUCTION: Advance care planning (ACP), an ongoing communication and planning process, aims to clarify a person's values and preferences, so these guide decision-making if the person becomes unable to make his or her own decisions. Ideally, ACP results in completion of advance care directives (ACD), documents completed by competent people outlining their values, treatment preferences and/or appointment of a substitute decision-maker (SDM). ACDs are most effective at the point of care, where they can be used to inform treatment decisions. Australian governments fund initiatives and have developed policy to increase ACD completion rates. However, little is known about the prevalence of ACDs at the point of care in Australian health services, making ACP evaluation efforts difficult. This study aims to determine the prevalence of ACDs in records of older people in Australian hospitals, aged care facilities and general practices. METHODS AND ANALYSIS: This is a national multicentre cross-sectional prevalence study in selected aged care facilities, hospitals and general practices. Following a 2017 feasibility study, a new protocol incorporating key learnings was developed. Sites will be recruited via expression of interest process. Health records of people aged ≥65 years, admitted to or attending services on study day(s) will be audited by trained staff from sites. Site-level data will be collected during the expression of interest. The primary outcome is the presence of at least one ACD in the health record. Secondary outcomes include prevalence of other documented outcomes of ACP (by health practitioner(s)/family/SDM), assessment of ACD quality and content and concordance between the person's documented preferences and any medical treatment orders. Individuals and sites characteristics where ACDs are present will be explored. ETHICS AND DISSEMINATION: Protocol approval by Austin Health Human Research Ethics Committee, Melbourne, Australia (reference: HREC/18/Austin/109). Results will be disseminated via peer-reviewed journals and conferences. Participating sites and jurisdictions will receive individualised reports of findings.

Concordance Between Self-Reported Completion of Advance Care Planning Documentation and Availability of Documentation in Australian Health and Residential Aged Care Services.

CONTEXT: Advance care planning (ACP) documentation needs to be available at the point of care to guide and inform medical treatment decision-making. OBJECTIVE: To examine concordance between self-reported completion of ACP documentation and self-reported storage of the documentation at the person's current point of care with the availability of the documentation in that person's health record. METHODS: A national multicenter audit of health records and a self-report survey of eligible audit participants in 51 Australian health and residential aged care services. The audit assessed availability of ACP documentation in the health record, whereas the survey assessed self-reported completion and storage of the ACP documentation at the person's current place of care. To ascertain concordance, survey and audit data were cross-tabulated and concordance rates and kappa statistics were calculated overall and by health care sector and ACP documentation type. RESULTS: The audit included 2285 people, of whom 1082 were eligible for the survey. Of 507 who completed the survey (response rate = 47%), 272 (54%) reported completing ACP documentation, of whom 130 (48%) had documentation identified in the audit. Conversely, 39 of 235 people (17%) who reported not completing ACP documentation had documentation identified (concordance rate = 64%; κ = 0.303, P < .001). The concordance rate increased to 79% when self-reported storage of ACP documentation at the person's current point of care was compared with the existence of the document in their health record (κ = 0.510, P < .001). Concordance varied by health care setting and type of ACP documentation. CONCLUSION: Discrepancies exist between self-reported completion of ACP documentation and the presence of these documents in the health records of older adults, representing a significant patient safety issue. Public education campaigns and improvements to systems for document storage and accessibility are required to support person-centered medical and end-of-life care.

Facilitators and barriers to advance care planning implementation in Australian aged care settings: A systematic review and thematic analysis.

OBJECTIVES: There are many studies investigating implementation of advance care planning (ACP) in aged care around the world, but few studies have investigated Australian settings. The objective of this study was to determine facilitators and barriers to implementation of ACP in Australian residential and community aged care. METHODS: Evidence from Australian studies published between 2007 and September 2017 of ACP in residential and community aged care was sourced from electronic databases using predetermined search strategies. Data were extracted and synthesised using thematic analysis, and summarised according to themes. RESULTS: Nine studies described facilitators and barriers of ACP implementation. Six themes were identified: "Education and Knowledge," "Skills and Training," "Procedures and Resources," "Perceptions and Culture," "Legislation" and "Systems." CONCLUSIONS: A whole of systems approach is necessary to facilitate uptake of ACP in residential aged care settings. More research is needed to understand facilitators and barriers to ACP in community aged care.

Volunteer Involvement in Advance Care Planning: A Scoping Review.

CONTEXT: Volunteer involvement may support organizations to initiate and operationalize complex interventions such as advance care planning (ACP). OBJECTIVES: A scoping review was conducted to map existing research on volunteer involvement in ACP and to identify gaps in current knowledge base. METHODS: We followed the PRISMA extension for Scoping Reviews (PRISMA-ScR) guidelines. The review included studies of any design reporting original research. ACP was defined as any intervention aimed at supporting people to consider and communicate their current and future health treatment goals in the context of their own preferences and values. Studies were included if they reported data relating to volunteers at any stage in the delivery of ACP. RESULTS: Of 11 studies identified, nine different ACP models (initiatives to improve uptake of ACP) were described. Most of the models involved volunteers facilitating ACP conversations or advance care directive completion (n = 6); and three focused on ACP education, training, and support. However, a framework for volunteer involvement in ACP was not described; the studies often provided limited detail of the scope of volunteers' roles in ACP, and in three of the models, volunteers delivered ACP initiatives in addition to undertaking other tasks, in their primary role as a volunteer navigator. Increased frequency of ACP conversation or documentation was most commonly used to evaluate the effectiveness of the studies, with most showing a trend toward improvement. CONCLUSIONS: Current literature on volunteer involvement in ACP is lacking a systematic approach to implementation. We suggest future research should focus on person-centered outcomes related to ACP to evaluate the effectiveness of volunteer involvement.

Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: multicentre audit study.

OBJECTIVES: It is important that the outcomes of advance care planning (ACP) conversations are documented and available at the point of care. Advance care directives (ACDs) are a subset of ACP documentation and refer to structured documents that are completed and signed by competent adults. Other ACP documentation includes informal documentation by the person or on behalf of the person by someone else (eg, clinician, family). The primary objectives were to describe the prevalence and correlates of ACDs among Australians aged 65 and over accessing health and residential aged care services. The secondary aim was to describe the prevalence of other ACP documentation. DESIGN AND SETTING: A prospective multicentre health record audit in general practices (n=13), hospitals (n=12) and residential aged care facilities (RACFs; n=26). PARTICIPANTS: 503 people attending general practice, 574 people admitted to hospitals and 1208 people in RACFs. PRIMARY AND SECONDARY OUTCOME MEASURES: Prevalence of one or more ACDs; prevalence of other ACP documentation. RESULTS: 29.8% of people had at least one ACD on file. The majority were non-statutory documents (20.9%). ACD prevalence was significantly higher in RACFs (47.7%) than hospitals (15.7%) and general practices (3.2%) (p<0.001), and varied across jurisdictions. Multivariate logistic regression showed that the odds of having an ACD were positively associated with greater functional impairment and being in an RACF or hospital compared with general practice. 21.6% of people had other ACP documentation. CONCLUSIONS: In this study, 30% of people had ACDs accessible and a further 20% had other ACP documentation, suggesting that approximately half of participants had some form of ACP. Correlates of ACD completion were greater impairment and being in an RACF or hospital. Greater efforts to promote and standardise ACDs across jurisdictions may help to assist older people to navigate and complete ACDs and to receive care consistent with their preferences. TRIAL REGISTRATION NUMBER: ACTRN12617000743369.

Prevalence of malnutrition and impact on clinical outcomes in cancer services: A comparison of two time points.

BACKGROUND: The prevention and management of malnutrition is increasingly recognised as a significant element of cancer care. By identifying and comparing cancer malnutrition in two large cross-sectional cancer populations, this study aims to provide a greater understanding of clinical characteristics and trajectories relating to cancer malnutrition. METHODS: A multi-centre point prevalence study was conducted in Victoria, Australia at two time points (March 2012, May 2014). Adults with cancer receiving ambulatory chemotherapy, radiotherapy and multi-day inpatients were included. The presence of malnutrition was determined using Patient Generated-Subjective Global Assessment (PG-SGA). Demographic, clinical information and 30-day outcomes were collected. RESULTS: The study included 1677 patients in 2012 (17 sites) and 1913 patients in 2014 (27 sites). Older age, ≥5% weight loss, hospital admission and metastatic disease were factors significantly associated with malnutrition. Patients with upper gastrointestinal, head and neck and lung cancers were more likely to be malnourished. Malnutrition was associated with infection and poor outcomes at 30-days. Malnutrition prevalence reduced from 31% in 2012 to 26% in 2014 (p = 0.002). This reflects a reduction in patients with malnutrition receiving ambulatory chemotherapy, those with upper gastrointestinal or colorectal cancers and those residing in regional areas. CONCLUSION: The study has provided a comprehensive description of cancer malnutrition prevalence representative of all treatment settings, tumour types and stages of disease. This provides valuable insight into cancer malnutrition enabling oncology services to identify opportunities to embed identification and prevention strategies into models of care, resulting in improved patient outcomes and reduced health care costs.