The conveyor belt for older people nearing the end of life.

The current fallback position for the elderly frail nearing the end of life (less than 12 months to live) is hospitalisation. There is a reluctance to use the term 'terminally ill' for this population, resulting in overtreatment, overdiagnosis and management that is not consistent with the wishes of people. This is the major contributor to the so-called hospital crisis, including decreased capacity of hospitals, reduced ability to conduct elective surgery, increased attendances at emergency departments and ambulance ramping. The authors recently conducted the largest randomised study, to their knowledge, attempting to inform specialist hospital medical teams about the terminally ill status of their admitted patients. This information did not influence their clinical decisions in any way. The authors discuss the reasons why this may have occurred, such as the current avoidance of discussing death and dying by society and the concentration of healthcare workers on actively managing the acute presenting problem and ignoring the underlying prognosis in the elderly frail. The authors discuss ways of improving the management of the elderly nearing the end of life, such as more detailed goals of care discussions using the concept of shared decision-making rather than simply completing Advanced Care Decision documents. Empowering people in this way could become the most important driver of people's health care.

Active inference goes to school: the importance of active learning in the age of large language models.

Human learning essentially involves embodied interactions with the material world. But our worlds now include increasing numbers of powerful and (apparently) disembodied generative artificial intelligence (AI). In what follows we ask how best to understand these new (somewhat 'alien', because of their disembodied nature) resources and how to incorporate them in our educational practices. We focus on methodologies that encourage exploration and embodied interactions with 'prepared' material environments, such as the carefully organized settings of Montessori education. Using the active inference framework, we approach our questions by thinking about human learning as epistemic foraging and prediction error minimization. We end by arguing that generative AI should figure naturally as new elements in prepared learning environments by facilitating sequences of precise prediction error enabling trajectories of self-correction. In these ways, we anticipate new synergies between (apparently) disembodied and (essentially) embodied forms of intelligence. This article is part of the theme issue 'Minds in movement: embodied cognition in the age of artificial intelligence'.

Maybe God Doesn't Even Like Miracles That Much.

Reflections from a pediatric chaplain on the irregularity of miracles with help from a Victorian author and an atheist-humanist colleague.

Impact of a prospective feedback loop aimed at reducing non-beneficial treatments in older people admitted to hospital and potentially nearing the end of life. A cluster stepped-wedge randomised controlled trial.

OBJECTIVES: To investigate if a prospective feedback loop that flags older patients at risk of death can reduce non-beneficial treatment at end of life. DESIGN: Prospective stepped-wedge cluster randomised trial with usual care and intervention phases. SETTING: Three large tertiary public hospitals in south-east Queensland, Australia. PARTICIPANTS: 14 clinical teams were recruited across the three hospitals. Teams were recruited based on a consistent history of admitting patients aged 75+ years, and needed a nominated lead specialist consultant. Under the care of these teams, there were 4,268 patients (median age 84 years) who were potentially near the end of life and flagged at risk of non-beneficial treatment. INTERVENTION: The intervention notified clinicians of patients under their care determined as at-risk of non-beneficial treatment. There were two notification flags: a real-time notification and an email sent to clinicians about the at-risk patients at the end of each screening day. The nudge intervention ran for 16-35 weeks across the three hospitals. MAIN OUTCOME MEASURES: The primary outcome was the proportion of patients with one or more intensive care unit (ICU) admissions. The secondary outcomes examined times from patients being flagged at-risk. RESULTS: There was no improvement in the primary outcome of reduced ICU admissions (mean probability difference [intervention minus usual care] = -0.01, 95% confidence interval -0.08 to 0.01). There were no differences for the times to death, discharge, or medical emergency call. There was a reduction in the probability of re-admission to hospital during the intervention phase (mean probability difference -0.08, 95% confidence interval -0.13 to -0.03). CONCLUSIONS: This nudge intervention was not sufficient to reduce the trial's non-beneficial treatment outcomes in older hospital patients. TRIAL REGISTRATION: Australia New Zealand Clinical Trial Registry, ACTRN12619000675123 (registered 6 May 2019).

Patients' and Caregivers' Suggestions for Improving Assisted Dying Regulation: A Qualitative Study in Australia and Canada.

INTRODUCTION: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and caregivers take action to influence their individual experience of AD, as well as AD systems more widely. This study analyses how patients and caregivers suggest other decision-makers in AD systems should address identified issues. METHODS: We conducted semistructured, qualitative interviews with patients and caregivers seeking AD in Victoria (Australia) and three Canadian provinces (British Columbia, Ontario and Nova Scotia). Data were analysed using reflexive thematic analysis and codebook template analysis. RESULTS: Sixty interviews were conducted with 67 participants (65 caregivers, 2 patients). In Victoria, this involved 28 interviews with 33 participants (32 caregivers, 1 patient) about 28 patient experiences. In Canada, this involved 32 interviews with 34 participants (33 caregivers, 1 patient) about 33 patient experiences. We generated six themes, corresponding to six overarching suggestions by patients and caregivers to address identified system issues: (1) improved content and dissemination of information about AD; (2) proactively develop policies and procedures about AD provision; (3) address institutional objection via top-down action; (4) proactively develop grief resources and peer support mechanisms; (5) amend laws to address legal barriers; and (6) engage with and act on patient and caregiver feedback about experiences. CONCLUSION: AD systems should monitor and respond to suggestions from patients and caregivers with firsthand experience of AD systems, who are uniquely placed to identify issues and suggestions for improvement. To date, Canada has responded comparatively well to address identified issues, whereas the Victorian government has signalled there are no plans to amend laws to address identified access barriers. This may result in patients and caregivers continuing to take on the burdens of acting to address identified issues. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers are central to this research. We interviewed patients and caregivers about their experiences of AD, and the article focuses on their suggestions for addressing identified barriers within AD systems. Patient interest groups in Australia and Canada also supported our recruitment process.

'My Advocacy is Not About Me, My Advocacy is About Canadians': A Qualitative Study of how Caregivers and Patients Influence Regulation of Medical Assistance in Dying in Canada.

Medical assistance in dying (MAiD) was legalised federally in Canada after the Supreme Court decision in Carter v Canada (Attorney General) [2015] 1 SCR 331. The federal legislative framework for MAiD was established via Bill C-14 in 2016. Caregivers and patients were central to Carter and subsequent litigation and advocacy, which resulted in amendments to the law via Bill C-7 in 2021. Research has primarily focused on the impacts of regulation on caregivers and patients. This qualitative study investigates how caregivers and patients influence law reform and the operation of MAiD practice in Canada (ie, behave as 'regulatory actors'), using Black's definition of regulation. We found that caregivers and patients performed sustained, focused, and intentional actions that influenced law reform and the operation of MAiD in practice. Caregivers and patients are not passive objects of Canadian MAiD regulation, and their role in influencing regulation (eg, law reform and MAiD practice) should be supported where this is desired by the person. However, recognising the burdens of engaging in regulatory action to address barriers to accessing MAiD or to quality care, and MAiD system gaps, other regulatory actors (eg, governments) should minimise this burden, particularly where a person engages in regulatory action reluctantly.

Digital Being: social media and the predictive mind.

Social media is implicated today in an array of mental health concerns. While concerns around social media have become mainstream, little is known about the specific cognitive mechanisms underlying the correlations seen in these studies or why we find it so hard to stop engaging with these platforms when things obviously begin to deteriorate for us. New advances in computational neuroscience, however, are now poised to shed light on this matter. In this paper, we approach the phenomenon of social media addiction through the lens of the active inference framework. According to this framework, predictive agents like us use a 'generative model' of the world to predict our own incoming sense data and act to minimize any discrepancy between the prediction and incoming signal (prediction error). In order to live well and be able to act effectively to minimize prediction error, it is vital that agents like us have a generative model, which not only accurately reflects the regularities of our complex environment but is also flexible and dynamic and able to stay accurate in volatile and turbulent circumstances. In this paper, we propose that some social media platforms are a spectacularly effective way of warping an agent's generative model and of arresting the model's ability to flexibly track and adapt to changes in the environment. We go on to investigate cases of digital tech, which do not have these adverse effects and suggest-based on the active inference framework-some ways to understand why some forms of digital technology pose these risks, while others do not.

End-of-life decision-making in the emergency department and intensive care unit: Health professionals' perspectives on and knowledge of the law in Queensland.

OBJECTIVE: To investigate ED and intensive care unit healthcare professionals' perspectives and knowledge of the law that underpins end-of-life decision-making in Queensland, Australia. METHODS: An online survey with questions about perspectives, perceived, and actual, knowledge of the law was distributed by the professional organisations of medical practitioners, nurses and social workers who work in Queensland EDs and intensive care units. RESULTS: The survey responses of 126 healthcare professionals were included in the final analysis. Most respondents agreed that the law was relevant to end-of-life decision-making, but that clinician and family consensus mattered more than following the law. Generally, doctors' legal knowledge was higher than nurses'; however, there were significant gaps in the knowledge of all respondents about the operation of advance health directives in Queensland. CONCLUSIONS: The legal framework that supports end-of-life decision-making for adults who lack decision-making capacity has been in place for more than two decades. Despite frequently being involved in making or enacting these decisions, gaps in the legal knowledge of healthcare professionals who work in EDs and intensive care units in Queensland are evident. Further research to better understand how to improve knowledge and application of the law is warranted.

Process evaluation of a tailored nudge intervention to promote appropriate care and treatment of older patients at the end-of-life.

BACKGROUND: Non-beneficial treatment affects a considerable proportion of older people in hospital, and some will choose to decline invasive treatments when they are approaching the end of their life. The Intervention for Appropriate Care and Treatment (InterACT) intervention was a 12-month stepped wedge randomised controlled trial with an embedded process evaluation in three hospitals in Brisbane, Australia. The aim was to increase appropriate care and treatment decisions for older people at the end-of-life, through implementing a nudge intervention in the form of a prospective feedback loop. However, the trial results indicated that the expected practice change did not occur. The process evaluation aimed to assess implementation using the Consolidated Framework for Implementation Research, identify barriers and enablers to implementation and provide insights into the lack of effect of the InterACT intervention. METHODS: Qualitative data collection involved 38 semi-structured interviews with participating clinicians, members of the executive advisory groups overseeing the intervention at a site level, clinical auditors, and project leads. Online interviews were conducted at two times: implementation onset and completion. Data were coded to the Consolidated Framework for Implementation Research and deductively analysed. RESULTS: Overall, clinicians felt the premise and clinical reasoning behind InterACT were strong and could improve patient management. However, several prominent barriers affected implementation. These related to the potency of the nudge intervention and its integration into routine clinical practice, clinician beliefs and perceived self-efficacy, and wider contextual factors at the health system level. CONCLUSIONS: An intervention designed to change clinical practice for patients at or near to end-of-life did not have the intended effect. Future interventions targeting this area of care should consider using multi-component strategies that address the identified barriers to implementation and clinician change of practice. TRIAL REGISTRATION: Australia New Zealand Clinical Trial Registry (ANZCTR), ACTRN12619000675123p (approved 06/05/2019).

'Can a relative override a patient's Advance Care Directive?': end-of-life legal worries of general practitioners and nurses working in aged care.

BACKGROUND: This paper aimed to describe the legal worries of Australian general practitioners (GPs) and nurses regarding end-of-life care provided in the aged care setting. METHODS: An analysis of responses to the final, open-ended question of a cross-sectional online survey of GPs and nurses practising in aged care settings in Queensland, New South Wales and Victoria was undertaken. RESULTS: Of the 162 GPs and 61 nurses who gave valid responses to the survey, 92% (151 GPs and 55 nurses) responded to the open-ended question. Participants identified concerns across all relevant areas of end-of-life law. The most common concerns were substitute decision-makers or family member(s) wanting to overrule an Advance Care Directive, requests for futile or non-beneficial treatment and conflict about end-of-life decision-making. Participants often also identified concerns about their lack of legal knowledge and their fear of law or risk related to both end-of-life care generally and providing medication that may hasten death. CONCLUSIONS: Australian GPs and nurses working in aged care have broad-ranging legal concerns about providing end-of-life care. Legal concerns and knowledge gaps identified here highlight priority areas for future training of the aged care workforce.

Legal issues in end-of-life care for speech-language pathologists and social workers: A scoping review.

PURPOSE: End-of-life law governs end-of-life decision-making in clinical practice. There has been little analysis of the specific legal issues relevant to allied health professionals working in end-of-life care. METHOD: A scoping review was undertaken to identify and examine the extent, range, and nature of literature on the legal issues relevant to end-of-life practice for Australian speech-language pathologists and social workers, including current gaps. Literature was identified by searching six electronic databases, Google Scholar, the websites of relevant professional organisations and State/Territory health departments, scanning reference lists, and drawing on existing knowledge. Data charting and thematic analysis of findings was performed. RESULT: Twenty documents were included, spanning various document types. Most focused on adult clinical practice. Documents demonstrated that the two professions encounter similar legal issues. CONCLUSION: Key gaps exist in the literature. Findings will inform these professionals of the legal issues relevant to their clinical practice and inform the development of further resources.

The role of law in end-of-life decision-making in emergency departments and intensive care units: a retrospective review of current practice in a Queensland health service.

Objective There is limited evidence about how legal frameworks that underpin end-of-life decisions are applied in practice. This study aimed to identify how end-of-life decisions are made and documented in emergency departments and intensive care units. The secondary aim was to explore the extent to which the legal processes featured in these decisions. Methods A retrospective chart audit of 85 adult patients who died in the emergency departments and intensive care units of a Queensland health service was undertaken. Quantitative data were analysed and reported using descriptive statistics. Qualitative textual data were analysed using inductive content analysis. Results Nearly all admissions were unplanned (97.6%), and most patients (74.1%) were admitted from home. Only one patient had an advance health directive, although all had an eligible substitute decision-maker. The qualitative analysis revealed two main concepts - 'healthcare professionals choreograph the end of life' and 'patients and families are carried on an unplanned journey'. Conclusions There was limited documentation related to the application of the legal framework in these decisions. Healthcare professionals relied on their clinical judgment about what was in the best interest of the patient. It was common for there to be a substantial effort to achieve consensus in decision-making which coincidently complied with the law.

Surfing uncertainty with screams: predictive processing, error dynamics and horror films.

Despite tremendous efforts in psychology, neuroscience and media and cultural studies, it is still something of a mystery why humans are attracted to fictional content that is horrifying, disgusting or otherwise aversive. While the psychological benefits of horror films, stories, video games, etc. has recently been demonstrated empirically, current theories emphasizing the negative and positive consequences of this engagement often contradict one another. Here, we suggest the predictive processing framework may provide a unifying account of horror content engagement that provides clear and testable hypotheses, and explains why a 'sweet spot' of fear and fun exists in horror entertainment. This article is part of the theme issue 'Art, aesthetics and predictive processing: theoretical and empirical perspectives'.

What Domains of Belgian Euthanasia Practice are Governed and by Which Sources of Regulation: A Scoping Review.

BACKGROUND: Multiple sources of regulation seek to shape euthanasia practice in Belgium, including legislation and training. This study comprehensively mapped which of these sources govern which domains of euthanasia practice, such health professionals' obligations, or managing patient requests. METHOD: Scoping review methodology was used to search for scholarly records which discussed Belgian euthanasia regulation. Template analysis was used to generate themes describing the domains of euthanasia practice governed by sources of regulation. RESULTS: Of 1364 records screened, 107 records were included. Multiple sources of regulation govern each domain, which are: the permissible scope of euthanasia; the legal status of a euthanasia death; the euthanasia process; the rights, obligations, and roles of those involved; system workings; and support for health professionals who provide euthanasia. CONCLUSIONS: Domains with significant yet fragmented regulation may lead to inconsistent care provision. Policymakers should develop coherent guidance to support health professionals to navigate this regulatory landscape.

Practitioners' experiences with 2021 amendments to Canada's medical assistance in dying law: a qualitative analysis.

Background: In 2016, Canada joined the growing number of jurisdictions to legalize medical assistance in dying (MAiD), when the Supreme Court of Canada's decision in Carter v Canada took effect and the Canadian Parliament passed Bill C-14. Five years later, Bill C-7 introduced several significant amendments. These included removing the 'reasonably foreseeable natural death' requirement (an aspect that was widely debated) and introducing the final consent waiver. Since Bill C-7 is so new, very little research has investigated its operation in practice. Objectives: This study investigates the experiences of MAiD assessors and providers regarding the Bill C-7 amendments. It explores implications for understanding and improving regulatory reform and implementation. Design: Qualitative thematic analysis of semi-structured interviews. Methods: In all, 32 MAiD assessors and providers (25 physicians and 7 nurse practitioners) from British Columbia (n = 10), Ontario (n = 15) and Nova Scotia (n = 7) were interviewed. Results: The analysis resulted in five themes: (1) removing barriers to MAiD access; (2) navigating regulatory and systems recalibration; (3) recognizing workload burdens; (4) determining individual ethical boundaries of practice and (5) grappling with ethical tensions arising from broader health system challenges. Conclusion: This is one of the first studies to investigate physicians' and nurse practitioners' experiences of the impact of Bill C-7 after the legislation was passed. Bill C-7 addressed key problems under Bill C-14, including the two witnesses requirement and the 10-day waiting period. However, it also introduced new complexities as practitioners decided how to approach cases involving a non-reasonably foreseeable natural death (and contemplated the advent of MAiD for persons with a mental disorder as a sole underlying condition). This study highlights the importance of involving practitioners in advance of legislative changes. It also emphasizes how the regulation of MAiD involves a range of organizations, which requires strong leadership and coordination from the government.

Mapping Sources of Assisted Dying Regulation in Belgium: A Scoping Review of the Literature.

Belgium has over 20 years of experience regulating assisted dying (AD). While much research considers this end-of-life practice, no studies have comprehensively analysed the various sources of regulation that govern it, including law, professional standards, and ethics. A scoping review identified all sources of regulation that guide AD practice, and their regulatory functions. Databases and reference lists were searched for records which met inclusion criteria between 11/2/22 and 25/3/22. Existing scholarship was used to identify sources of regulation, and thematically analyse their functions. Of the initial sample of 1364 records, 107 were included. Six sources of regulation were identified: law, policies, professional standards, training, advisory documents, and system design. Three regulatory functions were identified: prescribing conduct, scaffolding to support practice, and monitoring the system. The Belgian AD regulatory framework is multifaceted, complex, and fragmented. Providers must navigate and reconcile numerous sources of guidance providing this form of end-of-life care.

Accessing voluntary assisted dying in regional Western Australia: early reflections from key stakeholders.

INTRODUCTION: Most Australian jurisdictions have passed voluntary assisted dying (VAD) laws, with some regimes already in operation. Inequitable access to assisted dying in regional communities has been described internationally. Although regional access to VAD has been identified as a concern in Australia, to date it has been understudied empirically. Western Australia (WA) was the second Australian jurisdiction to pass and implement VAD laws. Due to the vast geography of WA (and the potential for such geography to exacerbate regional access inequities) several initiatives were introduced to try to mitigate such inequities. This article aims to explore the effectiveness of these initiatives, and report on regional provision of VAD in WA more generally, by drawing on the early experiences and reflections of key stakeholders. METHODS: A total of 27 semi-structured interviews were conducted with 29 participants belonging to four main stakeholder groups: patients and families, health practitioners, regulators and VAD system personnel, and health and professional organisation representatives. Interviews were transcribed verbatim and analysed using inductive thematic analysis. RESULTS: Data analysis led to the description of four main themes: the importance of the Regional Access Support Scheme, the need for local providers, the role of telehealth in VAD provision and the impact of distance. CONCLUSION: Early experiences and reflections of key stakeholders suggest that while many of the regional initiatives implemented by WA are largely effective in addressing regional access inequities, challenges for regional VAD provision and access remain.

Online modules to improve health professionals' end-of-life law knowledge and confidence: a pre-post survey study.

BACKGROUND: Health professionals and medical students have knowledge gaps about the law that governs end-of-life decision-making. There is a lack of dedicated training on end-of-life law and corresponding research on the impact of this type of training. OBJECTIVE: To examine the impact of online training modules on key concepts of end-of-life law on Australian health professionals' legal knowledge and their self-reported confidence in applying the law in practice. METHODS: Online pre- and post-training surveys were completed by training participants. The optional surveys collected demographic data, directly assessed legal knowledge and measured self-reported confidence in applying the law in clinical practice, before and after training. RESULTS: Survey response rates were 66% (pre-training) and 12% (post-training). The final sample for analysis (n = 136 participants with matched pre- and post-training surveys), included nurses, doctors, allied health professionals, medical students and a small number of non-health professionals. Following completion of the online training modules, legal knowledge scores significantly increased overall and across each domain of end-of-life law. Participants were also more confident in applying the law in practice after training (median = 3.0, confident) than before training (median = 2.0, not confident). CONCLUSIONS: This study found that completion of online training modules on end-of-life law increased Australian health professionals' legal knowledge and self-reported confidence in applying the law in clinical practice. Participants demonstrated some remaining knowledge gaps after training, suggesting that the training, while effective, should be undertaken as part of ongoing education on end-of-life law. Future research should examine longer term outcomes and impacts of the training.

Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study.

INTRODUCTION: Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this 'point of access' barrier. METHODS: We conducted semi-structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board. RESULTS: We interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so. CONCLUSION: Legal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria. PATIENT OR PUBLIC CONTRIBUTION: Families and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants.