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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Recent increases in the number of Venezuelan immigrant families in the United States and/or Canada have contributed to the need for developing effective assessment and counseling strategies to help this population integrate into their new environment. Assessment of Venezuelan families may be achieved effectively when therapists are able to delineate, without stereotyping, the contribution of culture to the presenting complaint and symptomatology. This article presents therapeutic considerations relating to Venezuelan families. Guidelines for gathering clinical information are discussed. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Advance care planning aims to ensure that care received during serious and chronic illness is consistent with the person's values, preferences and goals. However, less than 40% of people with dementia undertake advance care planning internationally. Aim: This study aims to describe the perspectives of people with dementia and their carers on advance care planning and end-of-life care. Design: Systematic review and thematic synthesis of qualitative studies. Data sources: Electronic databases were searched from inception to July 2018. Results: From 84 studies involving 389 people with dementia and 1864 carers, five themes were identified: avoiding dehumanising treatment and care (remaining connected, delaying institutionalisation, rejecting the burdens of futile treatment); confronting emotionally difficult conversations (signifying death, unpreparedness to face impending cognitive decline, locked into a pathway); navigating existential tensions (accepting inevitable incapacity and death, fear of being responsible for cause of death, alleviating decisional responsibility); defining personal autonomy (struggling with unknown preferences, depending on carer advocacy, justifying treatments for health deteriorations); and lacking confidence in healthcare settings (distrusting clinicians' mastery and knowledge, making uninformed choices, deprived of hospice access and support at end of life). Conclusion: People with dementia and their carers felt uncertain in making treatment decisions in the context of advance care planning and end-of-life care. Advance care planning strategies that attend to people's uncertainty in decision-making may help to empower people with dementia and carers and strengthen person-centred care in this context. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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%, X 2 (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%, X 2 (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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Immigrants from culturally and linguistically diverse (CALD) backgrounds diagnosed with cancer face multiple challenges with health systems foreign to them. There is scarce understanding about their needs following cancer treatment in the survivorship phase. Unmet needs were examined in immigrant Chinese and Greek cancer survivors in order to assist development of relevant and useful information resources for these CALD groups.Methods: Qualitative descriptive design was used. Adult cancer survivors, whose native language was Mandarin, Cantonese or Greek, were recruited through ethnic cancer support groups and cancer specialists in two Australian cities. Six focus groups were conducted, two in each native language group. Recorded responses were transcribed, translated into English, and thematically analysed.Results: Thirty-nine CALD cancer survivors participated from Greek (11), Cantonese (14) and Mandarin (14) backgrounds. Thematic findings included as follows: ongoing cancer-related stressors, cancer misunderstandings, coping strategies, 'survivor' seldom reflects self-appraisal, and additional CALD survivorship information needed. Immigrant cancer survivors may prefer 'recovery' to 'survivorship' descriptors and need information similar to Caucasian cancer survivors alongside as follows: resources for navigating health care, financial and community entitlements; caregiver-directed information to enhance their support; explanations about differences in health care approaches between survivors' original and adopted countries; and acknowledgment of survivorship diversity within CALD groups.Conclusions: Immigrant cancer survivors' additional requirements to native survivors likely reflect challenges in dealing with foreign environments and varied levels of acculturation within group members. Identification of immigrant cancer survivorship issues may support development of targeted resources for promoting survivors' self-care and capacity for finding, choosing, and using existing support options. [ABSTRACT FROM AUTHOR]

Aim The American Society of Clinical Oncology and US Institute of Medicine emphasize the need to trial novel models of posttreatment care, and disseminate findings. In 2011, the Victorian State Government ( Australia) established the Victorian Cancer Survivorship Program ( VCSP), funding six 2-year demonstration projects, targeting end of initial cancer treatment. Projects considered various models, enrolling people of differing cancer types, age and residential areas. We sought to determine common enablers of success, as well as challenges/barriers. Methods Throughout the duration of the projects, a formal 'community of practice' met regularly to share experiences. Projects provided regular formal progress reports. An analysis framework was developed to synthesize key themes and identify critical enablers and challenges. Two external reviewers examined final project reports. Discussion with project teams clarified content. Results Survivors reported interventions to be acceptable, appropriate and effective. Strong clinical leadership was identified as a critical success factor. Workforce education was recognized as important. Partnerships with consumers, primary care and community organizations; risk stratified pathways with rapid re-access to specialist care; and early preparation for survivorship, self-management and shared care models supported positive project outcomes. Tailoring care to individual needs and predicted risks was supported. Challenges included: lack of valid assessment and prediction tools; limited evidence to support novel care models; workforce redesign; and effective engagement with community-based care and issues around survivorship terminology. Conclusion The VCSP project outcomes have added to growing evidence around posttreatment care. Future projects should consider the identified enablers and challenges when designing and implementing survivorship care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]