Validating care and treatment scenarios for measuring decisional conflict regarding future care preferences among older adults.

OBJECTIVE: Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision-making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life-sustaining treatments and care utilisation to inform their broader use in ACP studies. METHODS: Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. RESULTS: Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's = .31-.37, p < .001), and ACP engagement (r's = -.41 to -.37, p < .001) indicated convergent validity. CONCLUSION: A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. PATIENT OR PUBLIC CONTRIBUTION: The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life-limiting conditions and five current or former care partners.

Oral glucose tolerance test-The imperfect gold standard for gestational diabetes screening: A qualitative study involving clinicians in regional, rural and remote areas of Western Australia.

ISSUE ADDRESSED: The oral glucose tolerance test is the 'gold standard' for detecting gestational diabetes in Australian and International guidelines. Test completion in regional, rural and remote regions may be as low as 50%. We explored challenges and enablers for regional, rural and remote antenatal clinicians providing gestational diabetes screening to better understand low oral glucose tolerance test completion. METHODS: We conducted a qualitative descriptive study using semi-structured interviews. Participants eligible for the study were doctors or midwives providing antenatal care in regional, rural and remote Western Australia, between August 2019 and November 2020. Interviews were recorded digitally and transcribed into a Word document. We conducted a thematic analysis after initial categorisation and deduction of themes through workshops involving the research team. RESULTS: We found a diversity of viewpoints on oral glucose tolerance test reliability for detecting gestational diabetes. Themes that emerged were; good collaboration between antenatal clinicians is required for successful screening; screening occurs throughout pregnancy using various tests; clinicians make significant efforts to address barriers; clinicians prioritise therapeutic relationships. CONCLUSIONS: Effective universal screening for gestational diabetes in regional, rural and remote Western Australia is difficult and more complex in practice than guidelines imply. Detecting gestational diabetes requires creative solutions, early identification of at risk women and trust and collaboration between clinicians and women. SO WHAT?: Detection of gestational diabetes in regional, rural and remote Western Australia remains poorly completed. New strategies are required to adequately identify women at risk of adverse birth outcomes relating to hyperglycaemia in pregnancy.

The impact of mild cognitive impairment on decision-making under explicit risk conditions: Evidence from the Personality and Total Health (PATH) Through Life longitudinal study.

OBJECTIVE: Previous research has indicated that cognition and executive function are associated with decision-making, however the impact of mild cognitive impairment (MCI) on decision-making under explicit risk conditions is unclear. This cross-sectional study examined the impact of MCI, and MCI subtypes, on decision-making on the Game of Dice Task (GDT), among a cohort of older adults. METHOD: Data from 245 older adult participants (aged 72-78 years) from the fourth assessment of the Personality and Total Health Through Life study were analyzed. A diagnostic algorithm identified 103 participants with MCI, with subtypes of single-domain amnestic MCI (aMCI-single; n = 38), multi-domain amnestic MCI (aMCI-multi; n = 31), and non-amnestic MCI (n = 33), who were compared with an age-, sex-, education-, and income-matched sample of 142 cognitively unimpaired older adults. Decision-making scores on the GDT (net score, single number choices, and strategy changes) were compared between groups using nonparametric tests. RESULTS: Participants with MCI showed impaired performance on the GDT, with higher frequencies of single number choices and strategy changes. Analyses comparing MCI subtypes indicated that the aMCI-multi subtype showed increased frequency of single number choices compared to cognitively unimpaired participants. Across the sample of participants, decision-making scores were associated with measures of executive function (cognitive flexibility and set shifting). CONCLUSION: MCI is associated with impaired decision-making performance under explicit risk conditions. Participants with impairments in multiple domains of cognition showed the clearest impairments. The GDT may have utility in discriminating between MCI subtypes.

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.

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.

Supported Decision-Making for People Living with Dementia: An Examination of Four Australian Guardianship Laws.

Australia is obliged under the Convention on the Rights of Persons with Disabilities to provide decision-making support to people with cognitive impairment. While there has been considerable recent activity looking at how the law should respond to the challenges raised by the Convention, there has been little discussion in Australia of how these changes will impact upon the care of people with dementia (the largest class of person with cognitive impairment in Australia). This section examines current Australian legal approaches to decision-making for people with dementia in four jurisdictions (New South Wales, South Australia, Victoria and Western Australia) through an analysis of reported tribunal decisions in each of these jurisdictions. It notes the scope for informal supported decision-making and the basis for the invocation of guardianship orders, including the new Victorian supportive guardianship order, and compares the new standards raised by the Convention. The section considers legal reforms which could improve the implementation of supported decision-making for people living with dementia.

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.

Determining the feasibility and effectiveness of brief online mindfulness training for rural medical students: a pilot study.

BACKGROUND: We sought to determine the feasibility and effectiveness of a mindfulness training program, delivered online to medical students at a Rural Clinical School. METHODS: An 8-week online training program was delivered to penultimate-year medical students at an Australian Rural Clinical School during 2016. Using a mixed methods approach, we measured the frequency and duration of participants' mindfulness meditation practice, and assessed changes in their perceived stress, self-compassion and compassion levels, as well as personal and professional attitudes and behaviours. RESULTS: Forty-seven participants were recruited to the study. 50% of participants were practising mindfulness meditation at least weekly by the end of the 8-week program, and 32% reported practising at least weekly 4 months following completion of the intervention. There was a statistically significant reduction in participants' perceived stress levels and a significant increase in self-compassion at 4-month follow-up. Participants reported insights about the personal and professional impact of mindfulness meditation training as well as barriers to practice. CONCLUSIONS: The results provide preliminary evidence that online training in mindfulness meditation can be associated with reduced stress and increased self-compassion in rural medical students. More rigorous research is required to establish concrete measures of feasibility of a mindfulness meditation program.

Project to improve storage, access and incorporation of advance care plans in a regional Australian hospital.

PROBLEM: Despite acknowledged benefits, the impact of advance care planning on usual care is inconsistent. DESIGN: Quality improvement study. SETTING: A Western Australian regional hospital. KEY MEASURES FOR IMPROVEMENT: This project aimed to create a system for storing, accessing and incorporating advance care planning documents in clinical care. STRATEGIES FOR CHANGE: Interventions over 18 months addressed four areas: medical records processes for receiving and processing advance care planning documents; information technology solutions for electronic storage and alerts; clerical staff duties in regards advance care planning documents; and clinician education. EFFECTS OF CHANGE: There was a 12-fold increase in advance care planning documents stored electronically and 100% of audited notes had correct filing of advance care planning documents with an alert in place at follow-up audit. Clinician recognition of the presence of an advance care planning document improved. Detailed examples of interventions are described. LESSONS LEARNT: Repeated exposure to different forms of advance care planning education, in conjunction with simple but effective system changes can make a difference in changing established hospital practice. Final impact of these changes on end-of-life care requires further audit.

How couples with dementia experience healthcare, lifestyle, and everyday decision-making.

ABSTRACTObjectives:Recent research has demonstrated the challenges to self-identity associated with dementia, and the importance of maintaining involvement in decision-making while adjusting to changes in role and lifestyle. This study aimed to understand the lived experiences of couples living with dementia, with respect to healthcare, lifestyle, and "everyday" decision-making. DESIGN: Semi-structured qualitative interviews using Interpretative Phenomenological Analysis as the methodological approach. SETTING: Community and residential care settings in Australia. PARTICIPANTS: Twenty eight participants who self-identified as being in a close and continuing relationship (N = 13 people with dementia, N = 15 spouse partners). Nine couples were interviewed together. RESULTS: Participants described a spectrum of decision-making approaches (independent, joint, supported, and substituted), with these approaches often intertwining in everyday life. Couples' approaches to decision-making were influenced by "decisional," "individual," "relational," and "external" factors. The overarching themes of "knowing and being known," "maintaining and re-defining couplehood" and "relational decision-making," are used to interpret these experiences. The spousal relationship provided an important context for decision-making, with couples expressing a history and ongoing preference for joint decision-making, as an integral part of their experience of couplehood. However, the progressive impairments associated with dementia presented challenges to maintaining joint decision-making and mutuality in the relationship. CONCLUSIONS: This study illustrates relational perspectives on decision-making in couples with dementia. Post-diagnostic support, education resources, proactive dyadic interventions, and assistance for spouse care partners may facilitate more productive attempts at joint decision-making by couples living with dementia.

Advance Care Planning for People with Dementia in Western Australia: An Examination of the Fit Between the Law and Practice.

This article examines the 'fit' between the Western Australian legislation on advance care planning (ACP) and health professionals' experiences implementing this in relation to persons with dementia. The legislative provisions are outlined, and a qualitative study of experiences with ACP among 19 health professionals, all engaged in the care of persons with dementia, is described. Based on these interviews, the authors propose three themes: 'navigating risk', 'the therapeutic journey' and 'the most agreeable outcome' to describe current practice in this area. The authors conclude that ACP in this context is aimed at minimising risk, establishing consensus and achieving the 'most agreeable outcome' for the person and their family, rather than privileging the individual autonomy of the person engaging in ACP. The implications for policy and law makers regarding possible reform of ACP in relation to persons with dementia are discussed.

Economic evaluation of future skin cancer prevention in Australia.

Public health programs to reduce the significant burden of skin cancer have been implemented in Australia and around the world. The economic rationale for prevention needs to be kept up-to-date as relevant disease patterns, risk factors and expenditure patterns change through time. The aim of this study was to update and extend the economic credentials for skin cancer prevention in Australia. Economic evaluations were conducted in 2015 with multiple methods applied, including cost-effectiveness and cost-benefit analysis, multiple study perspectives ('societal', 'health sector', '3rd party funder') and counterfactual analysis sourced from cancer incidence between 1982 and 2011. Modelled outcomes included 'cases prevented', 'deaths averted' and 'health-adjusted life-years'. Cost-benefit Analysis, including productivity impacts in the general economy, was conducted. With an additional $AUD 0.16 ($USD 0.12) per capita investment into future skin cancer prevention across Australia, 140,000 skin cancer cases would be prevented over the 20year reference period (2011 to 2030). Depending on study perspective and method, the upgraded program is either dominant (achieving both health gains and cost offsets) or highly cost-effective (health gain at modest net cost). Return on investment (ROI) was $AUD 3.20 per dollar invested, with net social benefit of $AUD 1.43 billion. The study confirmed the strong economic credentials for skin cancer prevention and provided sound arguments for increased investment in Australia. The reference case analysis provides a useful benchmark for other countries to consider in the design and funding of their prevention programs.

The role of mediation in advance care planning and end-of-life care.

BACKGROUND: General practitioners (GPs) play a key role in advance care planning (ACP), but face a number of difficulties in implementing ACP in routine practice, including fear of disputes involving the patient's family members. The interest-based negotiation approach employed by professional mediators may be a useful way of eliciting patients' and their family members' interests in ACP discussions, and establishing agreement and commitment to an advance care plan. OBJECTIVE: This article introduces the key skill set of professional mediators, examines how this approach can be employed in general practice and presents an 'interest mapping tool' to assist the GP in managing ACP discussions. DISCUSSION: Interest-based negotiation differentiates between a person's stated position and the interests underlying that position. By eliciting interests, the GP gains deeper insight into the factors driving patients' and their family members' preferences, and can identify shared interests as a basis for establishing agreement.

Rural health professionals' experiences in implementing advance care planning: a focus group study.

Advance care planning (ACP) is described as an ongoing discussion between a patient, their family and healthcare professionals (HCPs) to understand a patient's wishes for future health care. Legislation supporting ACP in Western Australia is relatively new and HCPs are still learning about the process and implementation. This study aimed to provide a rich description of rural health professionals' perceptions and experiences with ACP within the context of their professional role and to identify systemic issues and training needs. Ten focus groups were conducted throughout 2014 with a total of 55 rural participants including general practitioners (n=15), general practice registrars (n=6), practice nurses (n=18), community nurses (n=4) and hospital nurses (n=12) in the south-western regions of Western Australia. Thematic analysis has identified the following themes regarding ACP: benefits to patients and families; professional roles in ACP; barriers and enablers; and systems for communicating ACP. HCPs have self-determined their roles in the ACP process, which currently leaves some components of the process unaccounted for, suggesting that collaboration between HCPs working together in a rural health setting and a standardised system for distributing these documents may assist with the implementation of ACP.

Advance care planning and end-of-life care in a network of rural Western Australian hospitals.

OBJECTIVE: To provide a current perspective on end-of-life (EOL) care in regional Western Australia, with a particular focus on the final admission prior to death and the presence of documented advance care planning (ACP). DESIGN: Retrospective medical notes audit. SETTING: One regional hospital (including colocated hospice) and four small rural hospitals in the Great Southern region of Western Australia. PARTICIPANTS: Ninety recently deceased patients, who died in hospitals in the region. Fifty consecutive patients from the regional hospital and 10 consecutive patients from each of the four rural hospitals were included in the audit. INTERVENTIONS: A retrospective medical notes audit was undertaken. MAIN OUTCOME MEASURES: A 94-item audit tool assessed patient demographics, primary diagnosis, family support, status on admission and presence of documented ACP. Detailed items described the clinical care delivered during the final admission, including communication with family, referral to palliative care, transfers, medical investigations, medical treatments and use of EOL care pathways. RESULTS: Fifty-two per cent were women; median age was 82 years old. Forty per cent died of malignancy. Median length of stay was 7 days. Thirty-nine per cent had formal or informal ACP documented. Rural hospitals performed comparably with the regional hospital on all measures. CONCLUSIONS: This study provides benchmarking information that can assist other rural hospitals and suggests ongoing work on optimal methods of measuring quality in EOL care.

The role of public health advocacy in achieving an outright ban on commercial tanning beds in Australia.

Although many countries still face opposition to the legislation of artificial tanning beds, all Australian states and territories have announced a total ban on commercial tanning beds. A combination of epidemiological and policy-centered research, powerful personal stories, and the active advocacy of prominent academics, cancer organizations, and grassroots community campaigners contributed to the decisions to first legislate standards and then ban all commercial tanning beds. We have illustrated that incremental change can be an effective pathway to securing substantial public health reforms.

A public health approach to promoting advance care planning to Aboriginal people in regional communities.

OBJECTIVE: To explore perceptions of Noongar community members towards advance care planning (ACP), while developing culturally appropriate information resources for use in community and hospital settings. DESIGN: Qualitative research methods, combining active health promotion with interviews and group discussions for participant feedback. SETTING: Six rural communities across the Great Southern region of Western Australia. PARTICIPANTS: Eighteen Noongar community members consented to participate in interviews or group discussions. INTERVENTIONS: Community members received information about ACP at community events or home visits, from an Aboriginal health worker and palliative care researcher. MAIN OUTCOME MEASURES: Semi-structured interviews and group discussions were thematically analysed using a descriptive, exploratory approach. Research team reflections on community events also constituted data. RESULTS: Key themes impacting on perceptions of ACP included cultural approaches to dying, importance of family and kin, and appropriate communication. Participants were satisfied with the information resource and method of community engagement. CONCLUSIONS: Culturally appropriate methods of engaging Aboriginal people in ACP discussions should include Aboriginal health workers and take a whole of community approach to awareness raising.

The Cost-Effectiveness of Primary Prevention Interventions for Skin Cancer: An Updated Systematic Review.

OBJECTIVE: Preventing the onset of skin malignancies is feasible by reducing exposure to ultraviolet radiation. We reviewed published economic evaluations of primary prevention initiatives in the past decade, to support investment decisions for skin cancer prevention. METHODS: We assessed cost-effectiveness, cost-utility and benefit-cost analyses published from 1 September 2013. Seven databases were searched on 18 July 2023 and updated on 15 November 2023. Studies must have reported outcomes in terms of monetary costs, life years, quality-adjusted life years or variant thereof. A narrative synthesis was undertaken and reporting quality was assessed by three reviewers using the Consolidated Health Economic Evaluation Reporting Standards checklist. RESULTS: In total, 12 studies were included with five studies located in Australia; three in North America and the remaining four in Europe. Interventions included restricting the use of indoor tanning devices (7 studies), television advertising, multi-component sun safety campaigns, shade structures plus protective clothing provision for outdoor workers and provision of melanoma genomic risk information to individuals. Most studies constructed Markov cohort models and adopted a societal cost perspective. Overall, the reporting quality of the studies was high. Studies found highly favourable returns on investment ranging from US$0.35 for every $1 spent on prevention, up to €3.60 for every €1 spent. Other studies showed substantial skin cancers avoided, gains in life years, quality-adjusted survival, and societal cost savings. CONCLUSIONS: From both population health and economic perspectives, allocating limited health care resources to primary prevention of skin cancer is highly favourable.