The UK parliament is due to debate MP Kim Leadbeater’s bill on medically assisted dying for termi... more The UK parliament is due to debate MP Kim Leadbeater’s bill on medically assisted dying for terminally ill adults in England and Wales in November 2024. Scotland and Ireland are considering similar bills. Over 300 million people across the world already have access to the option. Leadbeater’s bill has yet to be published, but decades of international experience can inform UK law making and how the bill might be implemented to optimise safety and access for local context, and including concerns such as eligibility, safeguards, conscientious objection, oversight, and reporting.
Objective. Voluntary assisted dying (VAD) began in Queensland in January 2023 but little is known... more Objective. Voluntary assisted dying (VAD) began in Queensland in January 2023 but little is known about its practical operation. This research examined models of care for providing VAD in Queensland. Methods. Semi-structured interviews were conducted with 24 participants involved with VAD delivery across Queensland’s 16 Health and Hospital Services (HHSs). Participants included HHS VAD Coordinators, nurse practitioners and nurses who acted as administering practitioners, and Queensland VAD Support and Pharmacy Service (QVAD SPS) staff. Results. Five themes about Queensland VAD models of care were developed: VAD is accessed almost exclusively through the public sector via HHSs, influenced by a Health Service Directive; local models of care vary; nurses play significant roles facilitating access to and providing VAD; QVAD SPS has been instrumental supporting HHSs and ensuring statewide access as back-up VAD provider; and VAD services need more resourcing. Conclusions. The Queensland approach to providing VAD has been largely successful in ensuring patient access across the state. However, it differs from previous Australian VAD models with access predominantly through the public sector, greater roles played by nurse practitioners/nurses, and VAD being provided by QVAD SPS. Under-resourcing and consistency in provision of VAD services remain challenges.
Introduction
Increasing numbers of jurisdictions are legalising assisted dying (AD). Developing ... more Introduction Increasing numbers of jurisdictions are legalising assisted dying (AD). Developing research protocols to study the experiences and outcomes of legislation is imperative. AD is a topic that, by nature of its complexity and inherent ethical issues, lends itself to qualitative research. Using the objectives of the statutory framework, this qualitative study aims to provide a robust review of the newly formed AD service in New Zealand and the extent to which it is safe, people-centred, dignity-enhancing, accessible and available equitably to all eligible people. Methods and analysis The research uses an appreciative inquiry design to focus on what is working well, what could be improved, what constitutes the ‘ideal’ and how to enable people to achieve that ideal. We are using online semi-structured interviews and face-to-face focus groups to explore the experiences of key stakeholders: eligible/ineligible service users; eligible/ineligible service users with impairments; families of service users; AD providers; non-providers (providers who object to AD and others who are not directly involved in providing AD but are not opposed in principle); health service leaders; and Māori community members. An estimated 110 participants will be interviewed. We will conduct thematic and regulatory analyses of data. Ethics and dissemination The ethical aspects of this study have been approved by the Northern A Health and Disability Ethics Committee through the full review pathway (2023 EXP 18493). To disseminate the findings, we will draft resources to support interviewee groups, to be developed with feedback from stakeholder meetings. We will submit evidence-based recommendations to inform the government review of the End of Life Choice Act 2019. Findings will be disseminated in peer-reviewed publications, conferences, webinars, media, stakeholder feedback sessions and accessible research briefings.
This article examines the role of patients and caregivers as 'regulatory actors' in healthcare. I... more This article examines the role of patients and caregivers as 'regulatory actors' in healthcare. It uses and extends 'regulatory space theory' to argue that failing to consider the role of patients and caregivers as 'regulatory actors' in healthcare regulatory spaces misses a key piece of the regulatory puzzle. We argue that in assisted dying and other healthcare contexts, evidence shows that some patients and caregivers do behave as regulatory actors, engaging in sustained and focused attempts to alter behaviour. We then suggest a framework which explicitly incorporates notions of why patients and caregivers act in regulatory ways is helpful in understanding what the appropriate response to such actions should be. While the contribution of patients and caregivers to regulation is valuable and should be supported where desired by the person, if patients and caregivers are acting out of necessity to address system issues or 'regulatory failure', other regulatory actors (e.g. governments) should proactively respond and address these issues to reduce the burden on patients and caregivers of having to take regulatory action.
Objectives: To investigate if a prospective feedback loop that flags older patients at risk of de... more 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 southeast 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.
The current fallback position for the elderly frail nearing the end of life (less than 12 months ... more 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.
Introduction: Assisted dying (AD) has been legalised in a small but growing number of jurisdictio... more 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.
Medical assistance in dying (MAiD) was legalised federally in Canada after the Supreme Court deci... more 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.
This article analyses Australian law and literature to identify the key cultural and legal consid... more This article analyses Australian law and literature to identify the key cultural and legal considerations that can arise in medical treatment decision-making with Aboriginal and Torres Strait Islander peoples at the end-of-life. The authors explore how First Nation peoples' cultural values, connection to Country, family, and community, history, and health care experiences, intersect with end-of-life medical treatment laws, providing valuable insights for lawyers, policymakers and health practitioners.
Background: Non-beneficial treatment affects a considerable proportion of older people in hospita... more 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.
Objective: To investigate ED and intensive care unit healthcare professionals' perspectives and k... more 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.
Background: This paper aimed to describe the legal worries of Australian general practitioners (G... more 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.
Voluntary assisted dying is now lawful in all Australian states, with territories likely to follo... more Voluntary assisted dying is now lawful in all Australian states, with territories likely to follow. As this new end-of-life choice becomes more widely available and known, we should anticipate it arising during end-of-life care discussions with patients. In Australia, unlike some international models, voluntary assisted dying is not available to people without decision-making capacity. Therefore, patients cannot request voluntary assisted dying through an advance care directive or other advance care planning document. However, some competent adult patients undertaking advance care planning may want to discuss voluntary assisted dying. Reflection is needed to prepare patients, clinicians and health services for discussions about voluntary assisted dying during advance care planning.
Background: Multiple sources of regulation seek to shape euthanasia practice in Belgium, includin... more 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.
In 2021, two years after voluntary assisted dying (VAD) laws commenced in Victoria, Western Austr... more In 2021, two years after voluntary assisted dying (VAD) laws commenced in Victoria, Western Australia (WA) was the second Australian jurisdiction to permit VAD. While the two regimes are broadly similar, key differences exist. This article reports on findings from a qualitative study of WA participants with VAD experience across four stakeholder groups (patients and families; health practitioners; regulators and VAD system personnel; and health and professional organisation representatives), focusing particularly on participants’ reflections on aspects of the WA VAD regime which differ to Victoria and the practical implications of those differences. Globally, participants viewed VAD as operating smoothly in Western Australia and, despite identifying some areas for improvement, that WA’s model was more functional and accessible than Victoria’s. By comparing two different VAD models, this article’s findings add to growing empirical evidence about VAD in Australia and can inform future VAD reforms and reviews.
Background: In 2016, Canada joined the growing number of jurisdictions to legalize medical assist... more 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.
Objective: There is limited evidence about how legal frameworks that underpin end-of-life decisio... more 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.
On 19 June 2019, voluntary assisted dying became operational in Victoria, Australia, via the Volu... more On 19 June 2019, voluntary assisted dying became operational in Victoria, Australia, via the Voluntary Assisted Dying Act 2017 (Vic). Some evidence has emerged of barriers to accessing voluntary assisted dying in Australia. Drawing on the findings from qualitative interviews we conducted with a patient and family caregivers in Victoria, we investigate how actions taken by patients and family caregivers to overcome barriers to access may be conceived of as ‘regulatory’. We adopt Black’s definition of regulation as sustained, focused, and intentional action directed at altering others’ behaviour. We found that participants performed various actions to overcome barriers to access, and primarily, these actions were motivated by a desire to support voluntary assisted dying access for individual patients. However, many participants were motivated to make the voluntary assisted dying system better for others. Participants perceived that actions to overcome barriers to access by patients and family caregivers improved their individual experience of the voluntary assisted dying process. Sometimes, their actions also altered the behaviour of key participants in Victoria’s voluntary assisted dying system or impacted the system as a whole. Patients and family caregivers are central to Victoria’s voluntary assisted dying system, so it is positive they can overcome barriers to involvement in regulation, such as information asymmetry and power imbalances. However, having to undertake ‘regulation’ to alter others’ behaviour and the system to address access issues is not an easy role. Patients and family caregivers should have opportunities to be involved in regulation if they wish, but for others who do not wish to be involved, consideration must be given to addressing barriers to accessing voluntary assisted dying to reduce the burden on patients and family caregivers of having to take action to overcome these access barriers.
Belgium has over 20 years of experience regulating assisted dying (AD). While much research consi... more 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.
Introduction: Most Australian jurisdictions have passed voluntary assisted dying (VAD) laws, with... more 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.
The UK parliament is due to debate MP Kim Leadbeater’s bill on medically assisted dying for termi... more The UK parliament is due to debate MP Kim Leadbeater’s bill on medically assisted dying for terminally ill adults in England and Wales in November 2024. Scotland and Ireland are considering similar bills. Over 300 million people across the world already have access to the option. Leadbeater’s bill has yet to be published, but decades of international experience can inform UK law making and how the bill might be implemented to optimise safety and access for local context, and including concerns such as eligibility, safeguards, conscientious objection, oversight, and reporting.
Objective. Voluntary assisted dying (VAD) began in Queensland in January 2023 but little is known... more Objective. Voluntary assisted dying (VAD) began in Queensland in January 2023 but little is known about its practical operation. This research examined models of care for providing VAD in Queensland. Methods. Semi-structured interviews were conducted with 24 participants involved with VAD delivery across Queensland’s 16 Health and Hospital Services (HHSs). Participants included HHS VAD Coordinators, nurse practitioners and nurses who acted as administering practitioners, and Queensland VAD Support and Pharmacy Service (QVAD SPS) staff. Results. Five themes about Queensland VAD models of care were developed: VAD is accessed almost exclusively through the public sector via HHSs, influenced by a Health Service Directive; local models of care vary; nurses play significant roles facilitating access to and providing VAD; QVAD SPS has been instrumental supporting HHSs and ensuring statewide access as back-up VAD provider; and VAD services need more resourcing. Conclusions. The Queensland approach to providing VAD has been largely successful in ensuring patient access across the state. However, it differs from previous Australian VAD models with access predominantly through the public sector, greater roles played by nurse practitioners/nurses, and VAD being provided by QVAD SPS. Under-resourcing and consistency in provision of VAD services remain challenges.
Introduction
Increasing numbers of jurisdictions are legalising assisted dying (AD). Developing ... more Introduction Increasing numbers of jurisdictions are legalising assisted dying (AD). Developing research protocols to study the experiences and outcomes of legislation is imperative. AD is a topic that, by nature of its complexity and inherent ethical issues, lends itself to qualitative research. Using the objectives of the statutory framework, this qualitative study aims to provide a robust review of the newly formed AD service in New Zealand and the extent to which it is safe, people-centred, dignity-enhancing, accessible and available equitably to all eligible people. Methods and analysis The research uses an appreciative inquiry design to focus on what is working well, what could be improved, what constitutes the ‘ideal’ and how to enable people to achieve that ideal. We are using online semi-structured interviews and face-to-face focus groups to explore the experiences of key stakeholders: eligible/ineligible service users; eligible/ineligible service users with impairments; families of service users; AD providers; non-providers (providers who object to AD and others who are not directly involved in providing AD but are not opposed in principle); health service leaders; and Māori community members. An estimated 110 participants will be interviewed. We will conduct thematic and regulatory analyses of data. Ethics and dissemination The ethical aspects of this study have been approved by the Northern A Health and Disability Ethics Committee through the full review pathway (2023 EXP 18493). To disseminate the findings, we will draft resources to support interviewee groups, to be developed with feedback from stakeholder meetings. We will submit evidence-based recommendations to inform the government review of the End of Life Choice Act 2019. Findings will be disseminated in peer-reviewed publications, conferences, webinars, media, stakeholder feedback sessions and accessible research briefings.
This article examines the role of patients and caregivers as 'regulatory actors' in healthcare. I... more This article examines the role of patients and caregivers as 'regulatory actors' in healthcare. It uses and extends 'regulatory space theory' to argue that failing to consider the role of patients and caregivers as 'regulatory actors' in healthcare regulatory spaces misses a key piece of the regulatory puzzle. We argue that in assisted dying and other healthcare contexts, evidence shows that some patients and caregivers do behave as regulatory actors, engaging in sustained and focused attempts to alter behaviour. We then suggest a framework which explicitly incorporates notions of why patients and caregivers act in regulatory ways is helpful in understanding what the appropriate response to such actions should be. While the contribution of patients and caregivers to regulation is valuable and should be supported where desired by the person, if patients and caregivers are acting out of necessity to address system issues or 'regulatory failure', other regulatory actors (e.g. governments) should proactively respond and address these issues to reduce the burden on patients and caregivers of having to take regulatory action.
Objectives: To investigate if a prospective feedback loop that flags older patients at risk of de... more 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 southeast 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.
The current fallback position for the elderly frail nearing the end of life (less than 12 months ... more 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.
Introduction: Assisted dying (AD) has been legalised in a small but growing number of jurisdictio... more 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.
Medical assistance in dying (MAiD) was legalised federally in Canada after the Supreme Court deci... more 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.
This article analyses Australian law and literature to identify the key cultural and legal consid... more This article analyses Australian law and literature to identify the key cultural and legal considerations that can arise in medical treatment decision-making with Aboriginal and Torres Strait Islander peoples at the end-of-life. The authors explore how First Nation peoples' cultural values, connection to Country, family, and community, history, and health care experiences, intersect with end-of-life medical treatment laws, providing valuable insights for lawyers, policymakers and health practitioners.
Background: Non-beneficial treatment affects a considerable proportion of older people in hospita... more 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.
Objective: To investigate ED and intensive care unit healthcare professionals' perspectives and k... more 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.
Background: This paper aimed to describe the legal worries of Australian general practitioners (G... more 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.
Voluntary assisted dying is now lawful in all Australian states, with territories likely to follo... more Voluntary assisted dying is now lawful in all Australian states, with territories likely to follow. As this new end-of-life choice becomes more widely available and known, we should anticipate it arising during end-of-life care discussions with patients. In Australia, unlike some international models, voluntary assisted dying is not available to people without decision-making capacity. Therefore, patients cannot request voluntary assisted dying through an advance care directive or other advance care planning document. However, some competent adult patients undertaking advance care planning may want to discuss voluntary assisted dying. Reflection is needed to prepare patients, clinicians and health services for discussions about voluntary assisted dying during advance care planning.
Background: Multiple sources of regulation seek to shape euthanasia practice in Belgium, includin... more 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.
In 2021, two years after voluntary assisted dying (VAD) laws commenced in Victoria, Western Austr... more In 2021, two years after voluntary assisted dying (VAD) laws commenced in Victoria, Western Australia (WA) was the second Australian jurisdiction to permit VAD. While the two regimes are broadly similar, key differences exist. This article reports on findings from a qualitative study of WA participants with VAD experience across four stakeholder groups (patients and families; health practitioners; regulators and VAD system personnel; and health and professional organisation representatives), focusing particularly on participants’ reflections on aspects of the WA VAD regime which differ to Victoria and the practical implications of those differences. Globally, participants viewed VAD as operating smoothly in Western Australia and, despite identifying some areas for improvement, that WA’s model was more functional and accessible than Victoria’s. By comparing two different VAD models, this article’s findings add to growing empirical evidence about VAD in Australia and can inform future VAD reforms and reviews.
Background: In 2016, Canada joined the growing number of jurisdictions to legalize medical assist... more 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.
Objective: There is limited evidence about how legal frameworks that underpin end-of-life decisio... more 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.
On 19 June 2019, voluntary assisted dying became operational in Victoria, Australia, via the Volu... more On 19 June 2019, voluntary assisted dying became operational in Victoria, Australia, via the Voluntary Assisted Dying Act 2017 (Vic). Some evidence has emerged of barriers to accessing voluntary assisted dying in Australia. Drawing on the findings from qualitative interviews we conducted with a patient and family caregivers in Victoria, we investigate how actions taken by patients and family caregivers to overcome barriers to access may be conceived of as ‘regulatory’. We adopt Black’s definition of regulation as sustained, focused, and intentional action directed at altering others’ behaviour. We found that participants performed various actions to overcome barriers to access, and primarily, these actions were motivated by a desire to support voluntary assisted dying access for individual patients. However, many participants were motivated to make the voluntary assisted dying system better for others. Participants perceived that actions to overcome barriers to access by patients and family caregivers improved their individual experience of the voluntary assisted dying process. Sometimes, their actions also altered the behaviour of key participants in Victoria’s voluntary assisted dying system or impacted the system as a whole. Patients and family caregivers are central to Victoria’s voluntary assisted dying system, so it is positive they can overcome barriers to involvement in regulation, such as information asymmetry and power imbalances. However, having to undertake ‘regulation’ to alter others’ behaviour and the system to address access issues is not an easy role. Patients and family caregivers should have opportunities to be involved in regulation if they wish, but for others who do not wish to be involved, consideration must be given to addressing barriers to accessing voluntary assisted dying to reduce the burden on patients and family caregivers of having to take action to overcome these access barriers.
Belgium has over 20 years of experience regulating assisted dying (AD). While much research consi... more 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.
Introduction: Most Australian jurisdictions have passed voluntary assisted dying (VAD) laws, with... more 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.
Pandemics, Public Health Emergencies and Government Powers : Perspectives on Australian Law, 2021
The mortality rate of COVID-19 has emphasised decision-making at the end of life. In this chapter... more The mortality rate of COVID-19 has emphasised decision-making at the end of life. In this chapter, end of life decision-making relates to diverse matters ranging from health (advance care planning – ‘ACP’) to financial (enduring powers of attorney – ‘EPAs’), including distribution of property on death. The most topical matters highlighted by the pandemic include withholding and withdrawing life-sustaining treatment, the use of telehealth in voluntary assisted dying (‘VAD’), ACP and estate planning more broadly, particularly regarding the valid execution of advance care directives(‘ACDs’) or enduring guardianship (health matters), EPAs (financial and/or health matters) and wills. The pandemic presents an opportunity to explore not only the more contentious matters, such as telehealth in VAD and rationing life-sustaining treatment, but also more traditionally settled areas of law, such as witnessing requirements for enduring documents and the formalities for testamentary documents.
This chapter will analyse these issues. Part II will discuss withholding and withdrawing life sustaining treatment, rationing, VAD, and ACP. Part III will examine EPAs (for financial and/or health matters) and wills, including discussion of the impact of the emergency measures on the formal requirements and on the mental requirements, encompassing capacity, undue influence and elder abuse. The chapter concludes in Part IV with a discussion of the common themes of vulnerability, appropriate safeguards required to balance protective measures with autonomy, witnessing requirements, technology and access to end of life decision-making. It will be imperative to critically reflect upon the successes, failures and dilemmas that have arisen from the public health and emergency legislative responses to the pandemic to inform future policy responses and best practice for end of life decision-making beyond COVID-19.
Critical Perspectives on Human Rights Law in Australia, 2022
Critical Perspectives on Human Rights Law in Australia, Volume 2 provides a comprehensive, access... more Critical Perspectives on Human Rights Law in Australia, Volume 2 provides a comprehensive, accessible and Scholarly examination of many of the key human rights issues facing Australia today. Written for human rights and legal scholars, legal practitioners and those readers who wish to increase their understanding of the field, this book provides a timely and intriguing discussion on the law and policy regarding the application of human rights standards in Australia today.
The contributors are many of the nation's leading and emerging experts in human rights, drawn from both legal and non-legal disciplines, and from varied backgrounds including universities, NGOs, and the Australian Human Rights Commission. The authors outline and explore a collection of thought-provoking and controversial topics, presenting clear, articulate and engaging chapters that skilfully highlight both introductory ideas and in-depth critical analysis.
International Perspectives on End-of-Life Law Reform, 2021
This chapter identifies international trends in end-of-life law reform from analysing ten case st... more This chapter identifies international trends in end-of-life law reform from analysing ten case studies of reform from the United Kingdom, the United States, Canada, Australia, the Netherlands and Belgium. A key finding is that law reform is more likely to succeed when supported by ‘good process’. This includes effective consultation with key stakeholders and engaging with experts. Social science evidence is also increasingly influential in both legislative and judicial reform, particularly in relation to how assisted dying systems can operate safely in practice. Other factors contributing to reform are the support or advocacy of key individuals or groups, shifts in community sentiment, and changes in political composition of parliaments. The chapter also concludes that law reform is ultimately a political exercise. Compromise is often required for a law to pass. This has implications for designing effective end-of-life law, pointing to the need for critical evaluation of both proposed laws and how existing laws operate in practice. The chapter concludes with reflections about the future of end-of-life law.
International Perspectives on End-of-Life Law Reform, 2021
In 1995, the Northern Territory, the smallest of Australia’s states and territories, was the firs... more In 1995, the Northern Territory, the smallest of Australia’s states and territories, was the first jurisdiction in the world to enact operative legislation allowing voluntary euthanasia (as it was then called). This legislation was short-lived, being overturned by the Commonwealth government approximately nine months after it commenced operation. Since that time, and despite over forty attempts in all Australian states but one, voluntary assisted dying remained unlawful in Australia. But this changed when Victoria passed its Voluntary Assisted Dying Act 2017 (Vic) in November 2017, which became operative in June 2019. This chapter explores the Victorian experience as a successful model for voluntary assisted dying law reform. The reform process, led by the government with the personal support of key politicians was thorough, methodical and considered, and was undertaken in a staged way with extensive consultation. This approach may prove to be a successful formula for legislative reform in a country where ongoing and high-level public support for change has been met by equivalent ongoing political resistance to reform.
International Perspectives on End-of-Life Law Reform: Politics, Persuasion and Persistence, 2021
This chapter establishes why understanding end-of-life law reform is important and notes the cons... more This chapter establishes why understanding end-of-life law reform is important and notes the constant agitation for legal changes in the field. It describes in broad terms the issues considered in end-of-life law. They include assisted dying (voluntary euthanasia and assisted suicide), decisions about whether to withhold and withdraw potentially life-sustaining treatment and the law that governs palliative care. There are also some ‘new’ end-of-life practices that sit across these topics such as terminal sedation and voluntarily stopping eating and drinking. The chapter also considers the challenges of law reform. Changing law is generally a difficult undertaking but there are number of features of end-of-life law that make this particularly difficult. Finally, this chapter discusses each of the case study contributions to the book and its proposed overall approach.
Much has been written about whether end-of-life law should change and what that law should be. Ho... more Much has been written about whether end-of-life law should change and what that law should be. However, the barriers and facilitators of such changes – law reform perspectives – have been virtually ignored. Why do so many attempts to change the law fail but others are successful? International Perspectives on End-of-Life Law Reform aims to address this question by drawing on ten case studies of end-of-life law reform from the United Kingdom, the United States, Canada, the Netherlands, Belgium and Australia. Written by leading end-of-life scholars, the book's chapters blend perspectives from law, medicine, bioethics and sociology to examine sustained reform efforts to permit assisted dying and change the law about withholding and withdrawing life-sustaining treatment. Findings from this book shed light not only on changing end-of-life law, but provide insight more generally into how and why law reform succeeds in complex and controversial social policy areas.
Contemporary European Perspectives on the Ethics of End of Life Care, 2020
This chapter examines the concept of futility in end-of-life decision-making. The term is general... more This chapter examines the concept of futility in end-of-life decision-making. The term is generally used to describe the situation where the clinical treating team consider potentially life-sustaining treatment should not be provided. But the term ‘futility’ is a vexed one. Alternative terminology has been proposed such as ‘non-beneficial’ or ‘potentially inappropriate’ treatment. We contribute to these debates by offering another term – ‘disputed treatment’ – albeit one more limited in its application to where there is a disagreement about treatment. The chapter then traces key debates in the literature including attempts to define the term futility conceptually, and later empirically. A more recent body of work has also proposed a procedural approach to resolving futility disputes. Unsurprisingly, given the subjectivity of this concept, all of these approaches have been critiqued and these objections are considered. The chapter also considers the value of a concept like futility and its relationship with the distinct issue of health rationing. A final contribution is to offer an alternative approach to disputes about treatment that challenges the idea that futility decisions are ones for doctors, but also constrains the power of patients and substitute decision-makers to demand treatment.
Textbook of Adult Emergency Medicine [5th Ed.], 2019
1. An emergency department attendance represents an opportunity to set goals for care during the ... more 1. An emergency department attendance represents an opportunity to set goals for care during the attendance and beyond. 2. End of life discussions and advance care planning assist early decision making about treatment goals and end of life care. 3. Knowledge of the law assists decision making at the end of life. 4. Not all dying patients require the skill set of a palliative care specialist but every dying patient will benefit from a palliative approach. 5. Palliative care does not preclude active treatment where the intent is understood by patient and family. 6. Failure to diagnose dying can compromise patient care. 7. The emergency department should foster close relationships with local specialist palliative care providers to improve and ensure timely access for patients and families and so that emergency staff have access to the knowledge and skills provided.
Health Law in Australia is Australia’s leading text in this area and was the first book to deal w... more Health Law in Australia is Australia’s leading text in this area and was the first book to deal with health law on a comprehensive national basis. In this important field that continues to give rise to challenges for society, the book takes a logical, structured approach to explain the breadth of this area of law across all Australian jurisdictions. By covering all the major areas in this diverse field, Health Law in Australia enhances the understanding of the discipline as a whole. The book begins by situating health law in its wider context with chapters on medical ethics, human rights and how the health system as a whole is regulated. It then explores the general principles of health law, including chapters on “Negligence”, “Children and Consent to Medical Treatment”, and “Medical Confidentiality and Patient Privacy”. The book goes on to consider beginning-of-life and end-of-life issues, before concluding with chapters on emerging areas in health law, such as medical research, genetic technologies and biotechnology.
The contributing authors are national leaders who are specialists in these areas of health law and who can share with readers the results of their research.
Health Law in Australia has been written for both legal and health audiences. It is essential reading for undergraduate and postgraduate students, researchers and scholars in the disciplines of law, health and medicine, as well as health and legal practitioners, private health providers, and government departments and bodies in the health area.
Health Law in Australia is the first book to deal with health law on a comprehensive national bas... more Health Law in Australia is the first book to deal with health law on a comprehensive national basis. In a field of law that is becoming increasingly important and where the demand for expertise is rapidly expanding, Health Law in Australia takes a logical, structured approach to an examination of the law in all Australian jurisdictions.
By covering all the major areas in this diverse field of law, Health Law in Australia enhances the understanding of the discipline as a whole. Beginning with an exploration of the general principles of health law, including chapters on “Medical Negligence”, “Children and Consent”, and “Confidentiality, Privacy, and Access to Health Records”, the book goes on to consider beginning-of-life and end-of-life issues before concluding with chapters on emerging areas in health law, such as biotechnology and medical research.
The contributing authors include national leaders in the field who are specialists in these areas of health law and who can therefore reveal to readers the results of their research.
Health Law in Australia has been written for those with a legal background and is essential reading for undergraduate law students, postgraduate law students, researchers and scholars in the disciplines of law, health and medicine, as well as legal practitioners, government departments and bodies in the health area, and private health providers.
Most Australian states have introduced legislation to provide for enduring documents for financia... more Most Australian states have introduced legislation to provide for enduring documents for financial, personal and health care decision making in the event of incapacity. Since the introduction of Enduring Powers of Attorney (EPAs) and Advance Health Directives (AHDs) in Queensland in 1998, concerns have continued to be raised by service providers, professionals and individuals about the uptake, understanding and appropriate use of these documents. In response to these concerns, the Department of Justice and Attorney-General (DJAG) convened a Practical Guardianship Initiatives Working Party. This group identified the limited evidence base available to address these concerns. In 2009, a multidisciplinary research team from the University of Queensland and the Queensland University of Technology was awarded $90,000 from the Legal Practitioners Interest on Trust Account Fund to undertake a review of the current EPA and AHD forms.
The goal of the research was to gather data on the content and useability of the forms from the perspectives of a range of stakeholders, particularly those completing the EPA and AHD, witnesses of these documents, attorneys appointed under an EPA, and health professionals involved in the completion of an AHD or dealing with it in a clinical context. The researchers also sought to gather information from the perspective of Aboriginal and Torres Strait Islander (ATSI) individuals as well people from culturally and linguistically diverse (CALD) groups. Although the focus of the research was on the forms and the extent to which the current design, content and format represents a barrier to uptake, in the course of the research, some broader issues were identified which have an impact on the effectiveness of the EPA and AHD in achieving the goals of planning for financial and personal and health care in advance of losing capacity.
The data gathered enabled the researchers to achieve the primary goal of the research: to make recommendations to improve the content and useability of the forms which hopefully will lead to an increased uptake and appropriate use of the forms. However, the researchers thought it was important not to ignore broader policy issues that were identified in the course of the research. These broader issues have been highlighted in this Report, and the researchers have responded to them in a variety of ways. For some issues, the researchers have suggested alterations that could be made to the forms to address the particular concerns. For other issues, the researchers have suggested that Government may need to take specific action such as educating the broader community with some attention to strategies that engage particular groups within communities. Other concerns raised can only be dealt with by legislative reform and, in some of these cases, the researchers have identified issues that Government may wish to consider further. We do note, however, that it is beyond the scope of this Report to recommend changes to the law.
This three stage mixed methods project aimed to provide systematic evidence from a broad range of stakeholders in regard to: (i) which groups use and do not use these documents and why, (ii) the contribution of the length/complexity/format/language of the forms as barriers to their completion and/or effective use, and (iii) the issues raised by the current documents for witnesses and attorneys.
Understanding and use of EPAs and AHDs were generally explored in separate but parallel processes. A purposive sampling strategy included users of the documents as principals and attorneys, and professionals, witnesses and service providers who assist others to execute or use the forms. The first component of this study built on existing knowledge using a Critical Reference Group and material provided by the DJAG Practical Guardianship Initiatives Working Party. This assisted in the development of the data collection tools for subsequent stages. The second component comprised semi-structured interviews and focus groups with a targeted sample of current users of the forms, potential users, witnesses and other professionals to provide in-depth information on critical issues. Outreach to Aboriginal and Torres Strait Islander Elders and individuals and workers with CALD groups ensured a broad sample of potential users of the two documents. Fifty individual interviews and three focus groups were completed. Most interviews and focus groups focused on perceptions of, and experiences with, either the EPA or the AHD form. In the interviews with Indigenous people and the CALD focus groups, however, respondents provided their perceptions and experiences of both documents. In general, these respondents had not used the forms and were responding to the documents made available in the interview or focus group. In total, seventy-seven individuals were involved in interviews or focus groups. The final component comprised on-line surveys for EPA principals, EPA attorneys, AHD principals, witnesses of EPAs and AHDs and medical practitioners with experience of AHDs as nominated and/or treating doctors. The surveys were developed from the initial component and the qualitative analysis of the interview and focus group data. A total of 116 surveys were returned from major cities and regional Queensland. The survey data was analysed descriptively for patterns and trends. It is important to note that the aim of the survey was to gain insight into issues and concerns relating to the documents and not to make generalisations to the broader population.
Health Law in Australia is the country’s leading text in this area and was the first book to deal... more Health Law in Australia is the country’s leading text in this area and was the first book to deal with health law on a comprehensive national basis. In this important field that continues to give rise to challenges for society Health Law in Australia takes a logical, structured approach to explain the breadth of this area of law across all Australian jurisdictions.
By covering all the major areas in this diverse field, Health Law in Australia enhances the understanding of the discipline as a whole. Beginning with an exploration of the general principles of health law, including chapters on “Negligence”, “Children and Consent to Medical Treatment”, and “Medical Confidentiality and Patient Privacy”, the book goes on to consider beginning-of-life and end-of-life issues before concluding with chapters on emerging areas in health law, such as biotechnology, genetic technologies and medical research.
The contributing authors are national leaders who are specialists in these areas of health law and who can share with readers the results of their research.
Health Law in Australia has been written for both legal and health audiences and is essential reading for undergraduate and postgraduate students, researchers and scholars in the disciplines of law, health and medicine, as well as health and legal practitioners, government departments and bodies in the health area, and private health providers.
Victoria was the first Australian state to permit voluntary assisted dying (VAD). The law sets ou... more Victoria was the first Australian state to permit voluntary assisted dying (VAD). The law sets out a detailed and rigorous process that people must go through to seek VAD. This ensures only people who meet the eligibility criteria can access VAD, but it can also make the system complex. In this Australian-first study, we explored patient experiences of seeking VAD.
The Prevalence of Advance Care Planning Documentation in Australian Health and Residential Aged C... more The Prevalence of Advance Care Planning Documentation in Australian Health and Residential Aged Care Services project was launched in 2017. This is the final report for the project.
This report describes data and information relating to the 2018 Prevalence of Advance Care Planning Documentation in Australian Health and Residential Aged Care Services Study. The data represents the most comprehensive Australian evidence of advance care planning implementation in a selection of general practices, hospitals and residential aged care facilities across all jurisdictions.
Buck K, Detering KM, Sellars M, Sinclair C, White B, Kelly H and Nolte L. 2019. Prevalence of advance care planning documentation in Australian health and residential aged care services. Advance Care Planning Australia, Austin Health, Melbourne.
• At common law, a competent adult can refuse life-sustaining medical treatment, either contempor... more • At common law, a competent adult can refuse life-sustaining medical treatment, either contemporaneously or through an advance directive which will operate at a later time when the adult’s capacity is lost. • Legislation in most Australian jurisdictions also provides for a competent adult to complete an advance directive that refuses life-sustaining medical treatment. • At common law, a court exercising its parens patriae jurisdiction can consent to, or authorise, the withdrawal or withholding of life-sustaining medical treatment from an adult or child who lacks capacity if that is in the best interests of the person. A court may also declare that the withholding or withdrawal of treatment is lawful. • Guardianship legislation in all jurisdictions allows a substitute decision-maker, in an appropriate case, to refuse life-sustaining medical treatment for an adult who lacks capacity. • In terms of children, a parent may refuse life-sustaining medical treatment for his or her child if it is in the child’s best interests. • While a refusal of life-sustaining medical treatment by a competent child may be valid, this decision can be overturned by a court. • At common law and generally under guardianship statutes, demand for futile treatment need not be complied with by doctors.
• The doctrine of double effect is an exception to the general rule that taking active steps that... more • The doctrine of double effect is an exception to the general rule that taking active steps that end life is unlawful. • The essence of the doctrine at common law is intention. • Hastening a patient’s death through palliative care will be lawful provided the primary intention is to relieve pain, and not cause death, even if that death is foreseen. • Some States have enacted legislative excuses that deal with the provision of palliative care. • These statutory excuses tend to be stricter than the common law as they impose other requirements in addition to having an appropriate intent, such as adherence to some level of recognised medical practice. • The emerging practice of palliative sedation which is aimed at managing the patient’s refractory symptoms may be lawful, depending on the circumstances of the case. • Palliation provided to a competent patient who has chosen to stop eating and drinking may be lawful, depending on the circumstances of the case.
• Mechanisms to facilitate consent to healthcare for adults who lack capacity are necessary to en... more • Mechanisms to facilitate consent to healthcare for adults who lack capacity are necessary to ensure that these adults can lawfully receive appropriate medical treatment when needed. • In Australia, the common law plays only a limited role in this context, through its recognition of advance directives and through the parens patriae jurisdiction of superior courts. • Substitute decision- making for adults who lack capacity is facilitated primarily by guardianship and other related legislation. This legislation, which has been enacted in all Australian States and Territories, permits a range of decision-makers to make different types of healthcare decisions. • Substitute decision-makers can be appointed by the adult or by a tribunal. Where there is no appointed decision-maker, legislation generally empowers those close to the adult to make the relevant decision. Most Australian jurisdictions have also provided for statutory advance directives. • For the most serious of decisions, such as non-therapeutic sterilisations, consent can only be provided by a tribunal. Other decisions can generally be made by a range of substitute decision- makers. Some treatment, such as very minor treatment or that which is needed in an emergency, can be provided without consent. • Guardianship and other relevant legislation generally establishes a set of principles and/ or other criteria to guide healthcare decisions. Mechanisms have also been established to resolve disputes as to who is the appropriate decision-maker and how a decision should be made.
• For the purposes of this chapter, “health law” encapsulates regulation of the medical and healt... more • For the purposes of this chapter, “health law” encapsulates regulation of the medical and health professions, the administration of health services and the maintenance of public health to the extent that it is connected to the provision of health services. • There are diverging views as to whether health law can be regarded as a discrete “area of law”. • Health law draws on other areas of law such as tort law, criminal law and family law. It also draws upon other disciplines, most notably medical and health ethics. • Social and economic forces have influenced the development and direction of health law, and these forces may become even more influential in the future. • The increasingly globalised world has implications for Australia’s health systems and raises questions and creates commitments in respect of the international community. • Technological developments, including in respect of treatment, diagnosis and information management, create ongoing challenges for health law. • Patient rights, human rights and consumerism are increasingly key drivers in the development of health law. • Health law is significant to contemporary Australian society because of the gravity of the topics that fall within its ambit, its social relevance to so many aspects of human existence and endeavour, the important role it plays in protecting the vulnerable, and the extent to which it engages with fundamental principles of justice.
End of Life Law in Australia provides accurate, practical and relevant information to assist you ... more End of Life Law in Australia provides accurate, practical and relevant information to assist you in navigating the challenging legal issues that can arise with end of life decision-making.
This website is an initiative of the Australian Centre for Health Law Research. It is designed to be used by patients, families, health and legal practitioners, the media, policymakers and the broader community to access information about Australian laws relating to death, dying and decision-making at the end of life. These laws are very complex, particularly in Australia where the law differs between States and Territories, and where areas of uncertainty about the law exist. This website provides you with a broad introduction to these laws. It can also help you stay up to date with Recent Developments in the end of life area.
• The doctrine of double effect is an exception to the general rule that taking active steps that... more • The doctrine of double effect is an exception to the general rule that taking active steps that end life is unlawful. • The essence of the doctrine at common law is intention. • Hastening a patient’s death through palliative care will be lawful provided the primary intention is to relieve pain, and not cause death, even if that death is foreseen. • Some States have enacted legislative excuses that deal with the provision of palliative care. • These statutory excuses tend to be stricter than the common law as they impose other requirements in addition to having an appropriate intent, such as adherence to some level of recognised medical practice.
• At common law, a competent adult can refuse life-sustaining medical treatment, either contempor... more • At common law, a competent adult can refuse life-sustaining medical treatment, either contemporaneously or through an advance directive which will operate at a later time when the adult’s capacity is lost. • Legislation in most Australian jurisdictions also provides for a competent adult to complete an advance directive that refuses life-sustaining medical treatment. • At common law, a court exercising its parens patriae jurisdiction can consent to, or authorise, the withdrawal or withholding of life-sustaining medical treatment from an adult or child who lacks capacity if that is in the best interests of the person. A court may also declare that the withholding or withdrawal of treatment is lawful. • Guardianship legislation in most jurisdictions allows a substitute decision-maker, in an appropriate case, to refuse life-sustaining medical treatment for an adult who lacks capacity. • In terms of children, a parent may refuse life-sustaining medical treatment for his or her child if it is in the child’s best interests. • While a refusal of life-sustaining medical treatment by a competent child may be valid, this decision can be overturned by a court. • At common law and generally under guardianship statutes, demand for futile treatment need not be complied with by doctors.
• For the purposes of this chapter, “health law” encapsulates regulation of the medical and healt... more • For the purposes of this chapter, “health law” encapsulates regulation of the medical and health professions, the administration of health services and the maintenance of public health to the extent that it is connected to the provision of health services. • There are diverging views as to whether health law can be regarded as a discrete “area of law”. • Health law draws on other areas of law such as tort law, criminal law and family law. It is also draws upon other disciplines, most notably medical and health ethics. • Social and economic forces have influenced the development and direction of health law, and these forces may become even more influential as the century develops. • The increasingly globalised world has implications for Australia’s health systems and raises questions and creates commitments in respect of the international community. • Technological developments, including in respect of treatment, diagnosis and information management, create ongoing challenges for health law. • Patient rights, human rights and consumerism are increasingly key drivers in the development of health law. • Health law is significant to contemporary Australian society because of the gravity of the topics that fall within its ambit, its social relevance to so many aspects of human existence and endeavour, the important role it plays in protecting the vulnerable, and the extent to which it engages with fundamental principles of justice.
Mechanisms to facilitate consent to healthcare for adults who lack capacity are necessary to ensu... more Mechanisms to facilitate consent to healthcare for adults who lack capacity are necessary to ensure that these adults can lawfully receive appropriate medical treatment when needed. In Australia, the common law plays only a limited role in this context, through its recognition of advance directives and through the parens patriae jurisdiction of superior courts. • Substitute decision-making for adults who lack capacity is facilitated primarily by guardianship and other related legislation. This legislation, which has been enacted in all Australian States and Territories, permits a range of decision-makers to make different types of healthcare decisions. Substitute decision-makers can be appointed by the adult or by a guardianship or other tribunal. Where there is no appointed decision-maker, legislation generally empowers those close to the adult to make the relevant decision. Most Australian jurisdictions have also provided for statutory advance directives. • For the most serious of decisions, such as non-therapeutic sterilisations, consent can only be provided by a Tribunal. Other decisions can generally be made by a range of substitute decision-makers. Some treatment, such as very minor treatment or that which is needed in an emergency, can be provided without consent. • Guardianship legislation generally establishes a set of principles and/or other criteria to guide healthcare decisions. Mechanisms to resolve disputes as to who is the appropriate decision-maker and how a decision should be made have also been established.
1. An emergency department attendance represents an opportunity to set goals for care during the ... more 1. An emergency department attendance represents an opportunity to set goals for care during the attendance and beyond. 2. End of life discussions and advance care planning assist early decision-making about treatment goals and end of life care. 3. Knowledge of the law assists decision-making at the end of life. 4. Not all dying patients require the skill set of a palliative care specialist but every dying patient will benefit from a palliative approach. 5. Palliative care does not preclude active treatment where the intent is understood by patient and family. 6. Failure to diagnose dying can compromise patient care. 7. The emergency department should foster close relationships with local specialist palliative care providers to improve and ensure timely access for patients and families and so that emergency staff have access to the knowledge and skills provided.
At common law, a competent adult can refuse life-sustaining medical treatment, either contemporan... more At common law, a competent adult can refuse life-sustaining medical treatment, either contemporaneously or through an advance directive which will operate at a later time when the adult’s capacity is lost.
Legislation in most Australian jurisdictions also provides for a competent adult to complete an advance directive that refuses life-sustaining medical treatment.
At common law, a court exercising its parens patriae jurisdiction can consent to, or authorise, the withdrawal or withholding of life-sustaining medical treatment from an adult or child who lacks capacity if that is in the best interests of the person. A court may also declare that the withholding or withdrawal of treatment is lawful.
Guardianship legislation in all jurisdictions allows a substitute decision-maker, in an appropriate case, to refuse life-sustaining medical treatment for an adult who lacks capacity.
In terms of children, a parent may refuse life-sustaining medical treatment for his or her child if it is in the child’s best interests.
While a refusal of life-sustaining medical treatment by a competent child may be valid, this decision can be overturned by a court.
At common law and generally under guardianship statutes, demand for futile treatment need not be complied with by doctors.
For the purposes of this chapter, “health law” encapsulates regulation of the medical and health ... more For the purposes of this chapter, “health law” encapsulates regulation of the medical and health professions, the administration of health services and the maintenance of public health to the extent that it is connected to the provision of health services.
There are diverging views as to whether health law can be regarded as a discrete “area of law”.
Health law draws on other areas of law such as tort law, criminal law and family law. It also draws upon other disciplines, most notably medical and health ethics.
Social and economic forces have influenced the development and direction of health law, and these forces may become even more influential in the future.
The increasingly globalised world has implications for Australia's health systems and raises questions and creates commitments in respect of the international community.
Technological developments, including in respect of treatment, diagnosis and information management, create ongoing challenges for health law.
Patient rights, human rights and consumerism are increasingly key drivers in the development of health law.
Health law is significant to contemporary Australian society because of the gravity of the topics that fall within its ambit, its social relevance to so many aspects of human existence and endeavour, the important role it plays in protecting the vulnerable, and the extent to which it engages with fundamental principles of justice.
The doctrine of double effect is an exception to the general rule that taking active steps that e... more The doctrine of double effect is an exception to the general rule that taking active steps that end life is unlawful.
The essence of the doctrine at common law is intention.
Hastening a patient’s death through palliative care will be lawful provided the primary intention is to relieve pain, and not cause death, even if that death is foreseen.
Some States have enacted legislative excuses that deal with the provision of palliative care.
These statutory excuses tend to be stricter than the common law as they impose other requirements in addition to having an appropriate intent, such as adherence to some level of recognised medical practice.
Mechanisms to facilitate consent to healthcare for adults who lack capacity are necessary to ensu... more Mechanisms to facilitate consent to healthcare for adults who lack capacity are necessary to ensure that these adults can lawfully receive appropriate medical treatment when needed.
In Australia, the common law plays only a limited role in this context, through its recognition of advance directives and through the parens patriae jurisdiction of superior courts.
Substitute decision-making for adults who lack capacity is facilitated primarily by guardianship and other related legislation. This legislation, which has been enacted in all Australian States and Territories, permits a range of decision-makers to make different types of healthcare decisions.
Substitute decision-makers can be appointed by the adult or by a guardianship or other tribunal. Where there is no appointed decision-maker, legislation generally empowers those close to the adult to make the relevant decision. Most Australian jurisdictions have also provided for statutory advance directives.
For the most serious of decisions, such as non-therapeutic sterilisations, consent can only be provided by a tribunal. Other decisions can generally be made by a range of substitute decision-makers. Some treatment, such as very minor treatment or that which is needed in an emergency, can be provided without consent.
Guardianship legislation generally establishes a set of principles and/or other criteria to guide healthcare decisions. Mechanisms have also been established to resolve disputes as to who is the appropriate decision-maker and how a decision should be made.
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Papers by Ben White
safety and access for local context, and including concerns such as eligibility, safeguards, conscientious objection, oversight, and reporting.
with VAD delivery across Queensland’s 16 Health and Hospital Services (HHSs). Participants included HHS VAD Coordinators, nurse practitioners and nurses who acted as administering practitioners, and Queensland VAD Support and Pharmacy Service (QVAD SPS) staff. Results. Five themes about Queensland VAD models of care were developed: VAD is accessed almost exclusively through the public sector via HHSs, influenced by a Health Service Directive; local models of care vary; nurses play significant roles facilitating access to and providing VAD; QVAD SPS has been instrumental supporting HHSs and ensuring statewide access as back-up VAD provider; and VAD services need more resourcing. Conclusions. The Queensland approach to providing VAD has been largely successful in ensuring patient access across the state. However, it differs from previous Australian VAD models with access predominantly through the public
sector, greater roles played by nurse practitioners/nurses, and VAD being provided by QVAD SPS. Under-resourcing and consistency in provision of VAD services remain challenges.
Increasing numbers of jurisdictions are legalising assisted dying (AD). Developing research protocols to study the experiences and outcomes of
legislation is imperative. AD is a topic that, by nature of its complexity and inherent ethical issues, lends itself to qualitative research. Using the objectives of the statutory framework, this qualitative study aims to provide a robust review of the newly formed AD service in New Zealand
and the extent to which it is safe, people-centred, dignity-enhancing, accessible and available equitably to all eligible people.
Methods and analysis
The research uses an appreciative inquiry design to focus on what is working well, what could be improved, what constitutes the ‘ideal’ and how
to enable people to achieve that ideal. We are using online semi-structured interviews and face-to-face focus groups to explore the experiences of key stakeholders: eligible/ineligible service users; eligible/ineligible service users with impairments; families of service users; AD providers;
non-providers (providers who object to AD and others who are not directly involved in providing AD but are not opposed in principle); health service leaders; and Māori community members. An estimated 110 participants will be interviewed. We will conduct thematic and regulatory analyses of data.
Ethics and dissemination
The ethical aspects of this study have been approved by the Northern A Health and Disability Ethics Committee through the full review pathway (2023 EXP 18493). To disseminate the findings, we will draft resources to support interviewee groups, to be developed with feedback from stakeholder meetings. We will submit evidence-based recommendations to inform the government review of the End of Life Choice Act 2019. Findings will be disseminated in peer-reviewed publications, conferences, webinars, media, stakeholder feedback sessions and accessible research briefings.
Design: Prospective stepped-wedge cluster randomised trial with usual care and intervention phases.
Setting: Three large tertiary public hospitals in southeast 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.
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.
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.
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.
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.
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.
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.
safety and access for local context, and including concerns such as eligibility, safeguards, conscientious objection, oversight, and reporting.
with VAD delivery across Queensland’s 16 Health and Hospital Services (HHSs). Participants included HHS VAD Coordinators, nurse practitioners and nurses who acted as administering practitioners, and Queensland VAD Support and Pharmacy Service (QVAD SPS) staff. Results. Five themes about Queensland VAD models of care were developed: VAD is accessed almost exclusively through the public sector via HHSs, influenced by a Health Service Directive; local models of care vary; nurses play significant roles facilitating access to and providing VAD; QVAD SPS has been instrumental supporting HHSs and ensuring statewide access as back-up VAD provider; and VAD services need more resourcing. Conclusions. The Queensland approach to providing VAD has been largely successful in ensuring patient access across the state. However, it differs from previous Australian VAD models with access predominantly through the public
sector, greater roles played by nurse practitioners/nurses, and VAD being provided by QVAD SPS. Under-resourcing and consistency in provision of VAD services remain challenges.
Increasing numbers of jurisdictions are legalising assisted dying (AD). Developing research protocols to study the experiences and outcomes of
legislation is imperative. AD is a topic that, by nature of its complexity and inherent ethical issues, lends itself to qualitative research. Using the objectives of the statutory framework, this qualitative study aims to provide a robust review of the newly formed AD service in New Zealand
and the extent to which it is safe, people-centred, dignity-enhancing, accessible and available equitably to all eligible people.
Methods and analysis
The research uses an appreciative inquiry design to focus on what is working well, what could be improved, what constitutes the ‘ideal’ and how
to enable people to achieve that ideal. We are using online semi-structured interviews and face-to-face focus groups to explore the experiences of key stakeholders: eligible/ineligible service users; eligible/ineligible service users with impairments; families of service users; AD providers;
non-providers (providers who object to AD and others who are not directly involved in providing AD but are not opposed in principle); health service leaders; and Māori community members. An estimated 110 participants will be interviewed. We will conduct thematic and regulatory analyses of data.
Ethics and dissemination
The ethical aspects of this study have been approved by the Northern A Health and Disability Ethics Committee through the full review pathway (2023 EXP 18493). To disseminate the findings, we will draft resources to support interviewee groups, to be developed with feedback from stakeholder meetings. We will submit evidence-based recommendations to inform the government review of the End of Life Choice Act 2019. Findings will be disseminated in peer-reviewed publications, conferences, webinars, media, stakeholder feedback sessions and accessible research briefings.
Design: Prospective stepped-wedge cluster randomised trial with usual care and intervention phases.
Setting: Three large tertiary public hospitals in southeast 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.
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.
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.
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.
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.
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.
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.
withholding and withdrawing life-sustaining treatment, the use of telehealth in voluntary assisted dying (‘VAD’), ACP and estate planning more broadly, particularly regarding the valid execution of advance care directives(‘ACDs’) or enduring guardianship (health matters), EPAs
(financial and/or health matters) and wills. The pandemic presents an opportunity to explore not only the more contentious matters, such as telehealth in VAD and rationing life-sustaining treatment, but also more traditionally settled areas of law, such as witnessing requirements for
enduring documents and the formalities for testamentary documents.
This chapter will analyse these issues. Part II will discuss withholding and withdrawing life sustaining treatment, rationing, VAD, and ACP. Part III will examine EPAs (for financial and/or health matters) and wills, including discussion of the impact of the emergency measures on the formal requirements and on the mental requirements, encompassing capacity, undue influence and elder abuse. The chapter concludes in Part IV with a discussion of the common themes of vulnerability, appropriate safeguards required to balance protective measures with autonomy, witnessing requirements, technology and access to end of life decision-making. It
will be imperative to critically reflect upon the successes, failures and dilemmas that have arisen from the public health and emergency legislative responses to the pandemic to inform future policy responses and best practice for end of life decision-making beyond COVID-19.
The contributors are many of the nation's leading and emerging experts in human rights, drawn from both legal and non-legal disciplines, and from varied backgrounds including universities, NGOs, and the Australian Human Rights Commission. The authors outline and explore a collection of thought-provoking and controversial topics, presenting clear, articulate and engaging chapters that skilfully highlight both introductory ideas and in-depth critical analysis.
conceptually, and later empirically. A more recent body of work has also proposed a procedural approach to resolving futility disputes. Unsurprisingly, given the subjectivity of this concept, all of these approaches have been critiqued and these objections are considered. The chapter also considers the value of a concept like futility and its relationship with the distinct issue of health rationing. A final contribution is to offer an alternative approach to disputes about treatment that challenges the idea that futility decisions are ones for doctors, but also constrains the power of patients and substitute decision-makers to demand treatment.
2. End of life discussions and advance care planning assist early decision making about treatment goals and end of life care.
3. Knowledge of the law assists decision making at the end of life.
4. Not all dying patients require the skill set of a palliative care specialist but every dying patient will benefit from a palliative approach.
5. Palliative care does not preclude active treatment where the intent is understood by patient and family.
6. Failure to diagnose dying can compromise patient care.
7. The emergency department should foster close relationships with local specialist palliative care providers to improve and ensure timely access for patients and families and so that emergency staff have access to the knowledge and skills provided.
By covering all the major areas in this diverse field, Health Law in Australia enhances the understanding of the discipline as a whole. The book begins by situating health law in its wider context with chapters on medical ethics, human rights and how the health system as a whole is regulated. It then explores the general principles of health law, including chapters on “Negligence”, “Children and Consent to Medical Treatment”, and “Medical Confidentiality and Patient Privacy”. The book goes on to consider beginning-of-life and end-of-life issues, before concluding with chapters on emerging areas in health law, such as medical research, genetic technologies and biotechnology.
The contributing authors are national leaders who are specialists in these areas of health law and who can share with readers the results of their research.
Health Law in Australia has been written for both legal and health audiences. It is essential reading for undergraduate and postgraduate students, researchers and scholars in the disciplines of law, health and medicine, as well as health and legal practitioners, private health providers, and government departments and bodies in the health area.
By covering all the major areas in this diverse field of law, Health Law in Australia enhances the understanding of the discipline as a whole. Beginning with an exploration of the general principles of health law, including chapters on “Medical Negligence”, “Children and Consent”, and “Confidentiality, Privacy, and Access to Health Records”, the book goes on to consider beginning-of-life and end-of-life issues before concluding with chapters on emerging areas in health law, such as biotechnology and medical research.
The contributing authors include national leaders in the field who are specialists in these areas of health law and who can therefore reveal to readers the results of their research.
Health Law in Australia has been written for those with a legal background and is essential reading for undergraduate law students, postgraduate law students, researchers and scholars in the disciplines of law, health and medicine, as well as legal practitioners, government departments and bodies in the health area, and private health providers.
The goal of the research was to gather data on the content and useability of the forms from the perspectives of a range of stakeholders, particularly those completing the EPA and AHD, witnesses of these documents, attorneys appointed under an EPA, and health professionals involved in the completion of an AHD or dealing with it in a clinical context. The researchers also sought to gather information from the perspective of Aboriginal and Torres Strait Islander (ATSI) individuals as well people from culturally and linguistically diverse (CALD) groups. Although the focus of the research was on the forms and the extent to which the current design, content and format represents a barrier to uptake, in the course of the research, some broader issues were identified which have an impact on the effectiveness of the EPA and AHD in achieving the goals of planning for financial and personal and health care in advance of losing capacity.
The data gathered enabled the researchers to achieve the primary goal of the research: to make recommendations to improve the content and useability of the forms which hopefully will lead to an increased uptake and appropriate use of the forms. However, the researchers thought it was important not to ignore broader policy issues that were identified in the course of the research. These broader issues have been highlighted in this Report, and the researchers have responded to them in a variety of ways. For some issues, the researchers have suggested alterations that could be made to the forms to address the particular concerns. For other issues, the researchers have suggested that Government may need to take specific action such as educating the broader community with some attention to strategies that engage particular groups within communities. Other concerns raised can only be dealt with by legislative reform and, in some of these cases, the researchers have identified issues that Government may wish to consider further. We do note, however, that it is beyond the scope of this Report to recommend changes to the law.
This three stage mixed methods project aimed to provide systematic evidence from a broad range of stakeholders in regard to: (i) which groups use and do not use these documents and why, (ii) the contribution of the length/complexity/format/language of the forms as barriers to their completion and/or effective use, and (iii) the issues raised by the current documents for witnesses and attorneys.
Understanding and use of EPAs and AHDs were generally explored in separate but parallel processes. A purposive sampling strategy included users of the documents as principals and attorneys, and professionals, witnesses and service providers who assist others to execute or use the forms. The first component of this study built on existing knowledge using a Critical Reference Group and material provided by the DJAG Practical Guardianship Initiatives Working Party. This assisted in the development of the data collection tools for subsequent stages. The second component comprised semi-structured interviews and focus groups with a targeted sample of current users of the forms, potential users, witnesses and other professionals to provide in-depth information on critical issues. Outreach to Aboriginal and Torres Strait Islander Elders and individuals and workers with CALD groups ensured a broad sample of potential users of the two documents. Fifty individual interviews and three focus groups were completed. Most interviews and focus groups focused on perceptions of, and experiences with, either the EPA or the AHD form. In the interviews with Indigenous people and the CALD focus groups, however, respondents provided their perceptions and experiences of both documents. In general, these respondents had not used the forms and were responding to the documents made available in the interview or focus group. In total, seventy-seven individuals were involved in interviews or focus groups. The final component comprised on-line surveys for EPA principals, EPA attorneys, AHD principals, witnesses of EPAs and AHDs and medical practitioners with experience of AHDs as nominated and/or treating doctors. The surveys were developed from the initial component and the qualitative analysis of the interview and focus group data. A total of 116 surveys were returned from major cities and regional Queensland. The survey data was analysed descriptively for patterns and trends. It is important to note that the aim of the survey was to gain insight into issues and concerns relating to the documents and not to make generalisations to the broader population.
By covering all the major areas in this diverse field, Health Law in Australia enhances the understanding of the discipline as a whole. Beginning with an exploration of the general principles of health law, including chapters on “Negligence”, “Children and Consent to Medical Treatment”, and “Medical Confidentiality and Patient Privacy”, the book goes on to consider beginning-of-life and end-of-life issues before concluding with chapters on emerging areas in health law, such as biotechnology, genetic technologies and medical research.
The contributing authors are national leaders who are specialists in these areas of health law and who can share with readers the results of their research.
Health Law in Australia has been written for both legal and health audiences and is essential reading for undergraduate and postgraduate students, researchers and scholars in the disciplines of law, health and medicine, as well as health and legal practitioners, government departments and bodies in the health area, and private health providers.
This report describes data and information relating to the 2018 Prevalence of Advance Care Planning Documentation in Australian Health and Residential Aged Care Services Study. The data represents the most comprehensive Australian evidence of advance care planning implementation in a selection of general practices, hospitals and residential aged care facilities across all jurisdictions.
Buck K, Detering KM, Sellars M, Sinclair C, White B, Kelly H and Nolte L. 2019. Prevalence of advance care planning documentation in Australian health and residential aged care services. Advance Care Planning Australia, Austin Health, Melbourne.
https://www.advancecareplanning.org.au/docs/default-source/acpa-resource-library/acpa-publications/report-national-acd-prevalence-study-2019.pdf?sfvrsn=4
• Legislation in most Australian jurisdictions also provides for a competent adult to complete an advance directive that refuses life-sustaining medical treatment.
• At common law, a court exercising its parens patriae jurisdiction can consent to, or authorise, the withdrawal or withholding of life-sustaining medical treatment from an adult or child who lacks capacity if that is in the best interests of the person. A court may also declare that the withholding or withdrawal of treatment is lawful.
• Guardianship legislation in all jurisdictions allows a substitute decision-maker, in an appropriate case, to refuse life-sustaining medical treatment for an adult who lacks capacity.
• In terms of children, a parent may refuse life-sustaining medical treatment for his or her child if it is in the child’s best interests.
• While a refusal of life-sustaining medical treatment by a competent child may be valid, this decision can be overturned by a court.
• At common law and generally under guardianship statutes, demand for futile treatment need not be complied with by doctors.
• The essence of the doctrine at common law is intention.
• Hastening a patient’s death through palliative care will be lawful provided the primary intention is to relieve pain, and not cause death, even if that death is foreseen.
• Some States have enacted legislative excuses that deal with the provision of palliative care.
• These statutory excuses tend to be stricter than the common law as they impose other requirements in addition to having an appropriate intent, such as adherence to some level of recognised medical practice.
• The emerging practice of palliative sedation which is aimed at managing the patient’s refractory symptoms may be lawful, depending on the circumstances of the case.
• Palliation provided to a competent patient who has chosen to stop eating and drinking may be lawful, depending on the circumstances of the case.
• In Australia, the common law plays only a limited role in this context, through its recognition of advance directives and through the parens patriae jurisdiction of superior courts.
• Substitute decision- making for adults who lack capacity is facilitated primarily by guardianship and other related legislation. This legislation, which has been enacted in all Australian States and Territories, permits a range of decision-makers to make different types of healthcare decisions.
• Substitute decision-makers can be appointed by the adult or by a tribunal. Where there is no appointed decision-maker, legislation generally empowers those close to the adult to make the relevant decision. Most Australian jurisdictions have also provided for statutory advance directives.
• For the most serious of decisions, such as non-therapeutic sterilisations, consent can only be provided by a tribunal. Other decisions can generally be made by a range of substitute decision- makers. Some treatment, such as very minor treatment or that which is needed in an emergency, can be provided without consent.
• Guardianship and other relevant legislation generally establishes a set of principles and/ or other criteria to guide healthcare decisions. Mechanisms have also been established to resolve disputes as to who is the appropriate decision-maker and how a decision should be made.
• There are diverging views as to whether health law can be regarded as a discrete “area of law”.
• Health law draws on other areas of law such as tort law, criminal law and family law. It also draws upon other disciplines, most notably medical and health ethics.
• Social and economic forces have influenced the development and direction of health law, and these forces may become even more influential in the future.
• The increasingly globalised world has implications for Australia’s health systems and raises questions and creates commitments in respect of the international community.
• Technological developments, including in respect of treatment, diagnosis and information management, create ongoing challenges for health law.
• Patient rights, human rights and consumerism are increasingly key drivers in the development of health law.
• Health law is significant to contemporary Australian society because of the gravity of the topics that fall within its ambit, its social relevance to so many aspects of human existence and endeavour, the important role it plays in protecting the vulnerable, and the extent to which it engages with fundamental principles of justice.
This website is an initiative of the Australian Centre for Health Law Research. It is designed to be used by patients, families, health and legal practitioners, the media, policymakers and the broader community to access information about Australian laws relating to death, dying and decision-making at the end of life. These laws are very complex, particularly in Australia where the law differs between States and Territories, and where areas of uncertainty about the law exist. This website provides you with a broad introduction to these laws. It can also help you stay up to date with Recent Developments in the end of life area.
• There are diverging views as to whether health law can be regarded as a discrete “area of law”. • Health law draws on other areas of law such as tort law, criminal law and family law. It is also draws upon other disciplines, most notably medical and health ethics. • Social and economic forces have influenced the development and direction of health law, and these forces may become even more influential as the century develops. • The increasingly globalised world has implications for Australia’s health systems and raises questions and creates commitments in respect of the international community. • Technological developments, including in respect of treatment, diagnosis and information management, create ongoing challenges for health law. • Patient rights, human rights and consumerism are increasingly key drivers in the development of health law. • Health law is significant to contemporary Australian society because of the gravity of the topics that fall within its ambit, its social relevance to so many aspects of human existence and endeavour, the important role it plays in protecting the vulnerable, and the extent to which it engages with fundamental principles of justice.
Substitute decision-makers can be appointed by the adult or by a guardianship or other tribunal. Where there is no appointed decision-maker, legislation generally empowers those close to the adult to make the relevant decision. Most Australian jurisdictions have also provided for statutory advance directives. • For the most serious of decisions, such as non-therapeutic sterilisations, consent can only be provided by a Tribunal. Other decisions can generally be made by a range of substitute decision-makers. Some treatment, such as very minor treatment or that which is needed in an emergency, can be provided without consent. • Guardianship legislation generally establishes a set of principles and/or other criteria to guide healthcare decisions. Mechanisms to resolve disputes as to who is the appropriate decision-maker and how a decision should be made have also been established.
2. End of life discussions and advance care planning assist early decision-making about treatment goals and end of life care.
3. Knowledge of the law assists decision-making at the end of life.
4. Not all dying patients require the skill set of a palliative care specialist but every dying patient will benefit from a palliative approach.
5. Palliative care does not preclude active treatment where the intent is understood by patient and family.
6. Failure to diagnose dying can compromise patient care.
7. The emergency department should foster close relationships with local specialist palliative care providers to improve and ensure timely access for patients and families and so that emergency staff have access to the knowledge and skills provided.
Legislation in most Australian jurisdictions also provides for a competent adult to complete an advance directive that refuses life-sustaining medical treatment.
At common law, a court exercising its parens patriae jurisdiction can consent to, or authorise, the withdrawal or withholding of life-sustaining medical treatment from an adult or child who lacks capacity if that is in the best interests of the person. A court may also declare that the withholding or withdrawal of treatment is lawful.
Guardianship legislation in all jurisdictions allows a substitute decision-maker, in an appropriate case, to refuse life-sustaining medical treatment for an adult who lacks capacity.
In terms of children, a parent may refuse life-sustaining medical treatment for his or her child if it is in the child’s best interests.
While a refusal of life-sustaining medical treatment by a competent child may be valid, this decision can be overturned by a court.
At common law and generally under guardianship statutes, demand for futile treatment need not be complied with by doctors.
There are diverging views as to whether health law can be regarded as a discrete “area of law”.
Health law draws on other areas of law such as tort law, criminal law and family law. It also draws upon other disciplines, most notably medical and health ethics.
Social and economic forces have influenced the development and direction of health law, and these forces may become even more influential in the future.
The increasingly globalised world has implications for Australia's health systems and raises questions and creates commitments in respect of the international community.
Technological developments, including in respect of treatment, diagnosis and information management, create ongoing challenges for health law.
Patient rights, human rights and consumerism are increasingly key drivers in the development of health law.
Health law is significant to contemporary Australian society because of the gravity of the topics that fall within its ambit, its social relevance to so many aspects of human existence and endeavour, the important role it plays in protecting the vulnerable, and the extent to which it engages with fundamental principles of justice.
The essence of the doctrine at common law is intention.
Hastening a patient’s death through palliative care will be lawful provided the primary intention is to relieve pain, and not cause death, even if that death is foreseen.
Some States have enacted legislative excuses that deal with the provision of palliative care.
These statutory excuses tend to be stricter than the common law as they impose other requirements in addition to having an appropriate intent, such as adherence to some level of recognised medical practice.
In Australia, the common law plays only a limited role in this context, through its recognition of advance directives and through the parens patriae jurisdiction of superior courts.
Substitute decision-making for adults who lack capacity is facilitated primarily by guardianship and other related legislation. This legislation, which has been enacted in all Australian States and Territories, permits a range of decision-makers to make different types of healthcare decisions.
Substitute decision-makers can be appointed by the adult or by a guardianship or other tribunal. Where there is no appointed decision-maker, legislation generally empowers those close to the adult to make the relevant decision. Most Australian jurisdictions have also provided for statutory advance directives.
For the most serious of decisions, such as non-therapeutic sterilisations, consent can only be provided by a tribunal. Other decisions can generally be made by a range of substitute decision-makers. Some treatment, such as very minor treatment or that which is needed in an emergency, can be provided without consent.
Guardianship legislation generally establishes a set of principles and/or other criteria to guide healthcare decisions. Mechanisms have also been established to resolve disputes as to who is the appropriate decision-maker and how a decision should be made.