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Delivering safe, quality healthcare according to national standards is fundamental to achieving accreditation for health care services. End of Life Law for Clinicians (ELLC) has released four guides mapping how the ELLC training modules on end of life decision-making laws align with the national standards for acute care, aged care and, primary and community care:
For further information about how ELLC can support health services to meet accreditation email endoflifelaw@qut.edu.au .
The End of Life Law for Clinicians training program is seeking general practices to participate in an Australian-first Pilot Study to upskill GPs and Practice Nurses in end of life law. Gifts, CPD hours and other benefits are available for participating.
To learn more about the study read the Pilot Information. Expressions of interest close Friday 5 April 2024.
The Australian Centre for Health Law Research and Advance Care Planning Australia have released Guiding Principles for health professionals to assist them in navigating the topic of voluntary assisted dying (VAD) during advance care planning (ACP) discussions.
Though ACP is distinct from VAD, the topic of VAD may arise during ACP conversations. There are additional critical issues such as restrictions on raising VAD during discussions, conscientious objection and time limitations that health professionals need to be aware of when discussing VAD during ACP. These issues are discussed in a new Medical Journal of Australia article by Ben White and colleagues, Implications of voluntary assisted dying for advance care planning.
There are often unique challenges associated with end of life care for aged care patients. A new article in the Australian Journal of Primary Health explores the main legal worries of GPs and nurses providing end of life care in aged care. Common concerns included 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.
The study also found that health professionals were concerned about their lack of legal knowledge and fear of the law and legal risk. These gaps highlight priority areas in medico-legal education for health professionals, consistent with the Aged Care Royal Commission recommendations.
For free resources to support health professionals to manage legal issues that arise in aged care practice explore the End of Life Directions for Aged Care’s (ELDAC) End of Life Law Toolkit.
South Australia has released new Advance Care Directive (ACD) materials to align with recent changes to the Advance Care Directives Act 2013 (SA). Amendments include:
Visit South Australia's Advance Care Directives website to access the updated Advance Care Directives Form and other resources. Find out more about the law on Advance Care Directives in South Australia at End of Life Law in Australia.
Comparing Voluntary Assisted Dying Laws in Victoria and Western Australia: Western Australian Stakeholders' Perspectives. Casey Haining et al, Journal of Law and Medicine, 2023.
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 differs from that in Victoria and the practical implications of those differences.
Voluntary assisted dying in Australia: A comparative and critical analysis of state laws. Katherine Waller et al, University of New South Wales Law Journal, 2023.
This comparative analysis identifies and evaluates some of the key variations between Australian VAD laws. It highlights opportunities for reform which may inform the legislatively mandated reviews of each State’s VAD laws, and potential law reform in the Territories.
End-of-life decision-making in the emergency department and intensive care unit: Health professionals' perspectives on and knowledge of the law in Queensland. Jayne Hewitt et al, Emergency Medicine Australia, 2024.
This study sought investigated ED and intensive care unit healthcare professionals’ perspectives and knowledge of the law that underpins end-of-life decision-making in Queensland. An online survey with questions about perspectives, perceived, and actual, knowledge of the law was completed by medical practitioners, nurses and social workers who work in Queensland EDs and intensive care units. Most respondents (=126) 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.
What Domains of Belgian Euthanasia Practice are Governed and by Which Sources of Regulation: A Scoping Review. Madeleine Archer et al, OMEGA - Journal of Death and Dying, 2023.
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.
Process evaluation of a tailored nudge intervention to promote appropriate care and treatment of older patients at the end-of-life. Ella Bracci et al, BMC Geriatrics, 2024.
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.
Obtaining consent to medical treatment is not only a legal requirement, but good clinical practice in aged and palliative care. End of Life Directions for Aged Care (ELDAC) has released two new factsheets for health professionals and aged care providers about the law on consent to medical treatment:
These resources build on ELDAC's Overview of capacity and consent to medical treatment factsheet. Further legal resources for the aged care sector can be accessed in ELDAC’s End of Life Law Toolkit.
The Australian Department of Health and Aged Care has released for public consultation an exposure draft of the Bill for the new Aged Care Act. Submissions are open until 16 February 2024. Consultation papers providing guidance on the Bill are available.
The Bill was developed in response to the findings of the Royal Commission into Aged Care Quality and Safety, which recommended legislative reform of the existing aged care system. It outlines how funded aged care services will be provided under the Commonwealth aged care system. It focuses on the needs of older people, and improving the quality and safety of services.
In relation to decision-making with older people receiving aged care, the Bill introduces:
A discussion of the Bill's substitute decision-making provisions is available in a recent Australian Ageing Agenda article by Dr John Chesterman, Queensland Public Advocate,
Tasmania’s and South Australia’s Voluntary Assisted Dying regulators have released reports on the operation of VAD in those States.
In Tasmania, from 23 October 2022 to 30 June 2023:
In South Australia, from 31 January to 30 September 2023:
At the end of life, unique legal considerations can arise when caring for Aboriginal and Torres Strait Islander Peoples, and people from other diverse health populations e.g. LGBTIQ+ people, people from culturally and linguistically diverse backgrounds, and people with disability.
A new article in the Australian Nursing and Midwifery Journal explains how understanding these legal considerations can support nurses and other health professionals to deliver culturally safe, culturally response, inclusive end of life care. Free training on these topics is available in two End of Life Law for Clinicians online training modules:
Register for the End of Life Law for Clinicians online training.
Online modules to improve health professionals’ end-of-life law knowledge and confidence: a pre-post survey study. Rachel Feeney et al, BMC Palliative Care, 2023
Health professionals and medical students have knowledge gaps about the law that governs end-of-life decision-making. There is a lack of dedicated training on end-of-life law and corresponding research on the impact of this type of training. This study examines the impact of online training modules on key concepts of end-of-life law on Australian health professionals’ legal knowledge and their self-reported confidence in applying the law in practice. This study found that completion of online training modules on end-of-life law increased Australian health professionals’ legal knowledge and self-reported confidence in applying the law in clinical practice. Participants demonstrated some remaining knowledge gaps after training, suggesting that the training, while effective, should be undertaken as part of ongoing education on end-of-life law.
The role of law in end-of-life decision-making in emergency departments and intensive care units: A retrospective review of current practice in a Queensland health service. Jane Hewitt et al, Australian Health Review, 2023.
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 9 the extent to which the legal processes featured in these decisions.
A retrospective chart audit of 85 adult patients who died in the Emergency Departments 11 and Intensive Care Units of a Queensland health service was undertaken. Nearly all admissions were unplanned (97.6%). 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’. In conclusion, 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.
'Regulatory Action’ by Patients and Family Caregivers to Overcome Barriers to Accessing Voluntary Assisted Dying: A Qualitative Study in Victoria, Australia. Ruthie Jeanneret et al, University of New South Wales Law Journal (in press)
Some evidence has emerged of barriers to accessing voluntary assisted dying(VAD) in Australia. Drawing on the findings from qualitative interviews conducted with patient and family caregivers in Victoria, this article investigates how actions taken by patients and family caregivers to overcome barriers to access may be conceived of as ‘regulatory’.
Practitioners' experiences with 2021 amendments to Canada's medical assistance in dying law: A qualitative analysis. Eliana Close et al, Palliative Care and Social Practice, 2023.
In 2016, Canada joined the growing number of jurisdictions to legalise 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.
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. 32 MAiD assessors and providers (25 physicians and 7 nurse practitioners) from British Columbia, Ontario and Nova Scotia were interviewed. The analysis explores implications for understanding and improving regulatory reform and implementation.
Mapping sources of assisted dying regulation in Belgium: A scoping review of the literature. Madeleine Archer et al, OMEGA – Journal of Death and Dying, 2023
Belgium legalised assisted dying in 2002, over 20 years ago. Since then, the scholarly literature has been documenting the development and dissemination of ‘regulatory tools’ on assisted dying such as policies and guidelines. While some of these have been produced by government bodies, many have been developed by groups and organisations such as professional bodies and health care institutions. This study used scoping review methodology to, first, identify the sources of regulation which shape assisted dying practice in Belgium, and second, identify the regulatory functions that they have. The study findings highlight the complexity of the Belgian assisted dying regulatory landscape.
On 28 November 2023 voluntary assisted dying (VAD) laws commenced in New South Wales. VAD is now operating in all Australian States.
The Voluntary Assisted Dying Act 2022 (NSW) largely follows the model of VAD in other Australian States. However, there are some key differences in NSW, which are explored in a new article in The Conversation. These include:
For further information about VAD in NSW:
The Australian Capital Territory (‘ACT’) Government has introduced the Voluntary Assisted Dying Bill 2023 (‘the Bill’) to legalise voluntary assisted dying in the ACT. The Bill is similar to the VAD legislation currently in force in the Australian states, but differs in two key ways:
For further information visit The Conversation.
A significant barrier to accessing VAD in Australia, particularly in regional areas, is a Commonwealth law prohibiting communication about VAD by telehealth. Currently the Commonwealth Criminal Code Act 1995 prohibits a person from counselling, inciting, promoting, or providing instruction on suicide through a ‘carriage service’, which includes phones, emails and telehealth services.
Until now, it had been unclear whether VAD is considered suicide under the Commonwealth Criminal Code when it is self-administered, and whether medical practitioners who discuss VAD with their patients via telehealth or telephone (which is lawful under State legislation) might be committing a Commonwealth offence.
However, last week the Federal Court of Australia delivered judgment in a case brought by a Melbourne GP to clarify the definition of suicide under the Commonwealth Criminal Code. The Court confirmed that VAD is ‘suicide’ within the meaning of the Commonwealth Criminal Code. This means that although practitioners may be permitted to use telehealth, telephone or email for discussions concerning VAD under state VAD laws, they may be at risk of breaching the Commonwealth Criminal Code.
A new research briefing from researchers at the Australian Centre for Health Law Research suggests that the Commonwealth Criminal Code should be amended to state either that:
Such an amendment would mean that, where appropriate, telehealth could be used by practitioners who are assisting patients who choose VAD at the end of life. It would also reduce barriers and harms faced by some Australians seeking access to VAD and family caregivers, especially those in regional Australia.
The Learn Me Right in Health Law and Bioethics podcast has released a new mini-series on VAD. This 10 episode series features interviews with end of life law experts, and covers issues such as comparison of state laws, barriers to access, and telehealth.
The series was produced by PhD researchers Sinead Prince and Ruthie Jeanneret from QUT's School of Law to examine what has worked well and what hasn't since the Australian states legalised VAD. It is available from the Australian Centre for Health Law Research, as well as on Apple podcasts.
The 4th edition of Health Law in Australia, the country’s leading health law text, is now available from Thomson Reuters. Edited by Australian Centre for Health Law Research academics Ben White, Fiona McDonald, Lindy Willmott, and Shih-Ning Then, it takes a logical, structured approach to explain the laws in this area across all Australian jurisdictions. It includes contributions from 28 health law experts from 13 universities, with the foreword by The Hon Michael Kirby AC CMG.
Research briefing: Commonwealth telehealth ban is an unfair barrier to seeking Voluntary assisted dying. Ben White et al, Australian Centre for Health Law Research, QUT
This research briefing explores the findings from a study of 140 patients, family caregivers, doctors, nurses, and regulators of VAD across Victoria, Western Australia and Queensland. The study found that the current Commonwealth laws:
It recommends amendments to the Commonwealth Criminal Code to resolve these issues.
Accessing voluntary assisted dying in regional Western Australia: early reflections from key stakeholders. Casey Haining et al, Rural and Remote Health, 2023
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. Due to the vast geography of Western Australia (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.
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. 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.
Queensland’s Voluntary Assisted Dying Review Board has released its inaugural annual report on the operation of VAD in Queensland. It reports that for the period 1 January 2023 to 30 June 2023:
The Review Board recommended:
Early research on the patient experience of seeking VAD in Victoria shows that accessing the VAD system is challenging. Researchers from the Australian Centre for Health Law Research, QUT conducted a study that examined how people found out about VAD and made contact with someone who could help them start the VAD process. The research team conducted semi‐structured qualitative interviews with family caregivers and a person seeking VAD, and analysed reports of the Victorian Voluntary Assisted Dying Review Board.
Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified:
The researchers identified legal, policy and practice changes that are needed to facilitate patients being able to find a connection to the VAD system. Recommendations included improving community health literacy about VAD; doctors and institutions informing people about how to connect with the VAD system, repealing the legal prohibition on raising VAD, more support for doctors in general practice, and medical education. For further information access:
This study is part of the Australian Research Council Future Fellowship project Enhancing End of Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying. For more information about this project, including other publications, visit the project website.
LGBTIQ+ Health Australia has launched the first two modules of the LGBTIQ+ Inclusive Palliative Care eLearning for health professionals course. This free course aims to increase healthcare providers’ confidence in providing LGBTIQ+ inclusive palliative care. The modules focus on areas including:
The eLearning topics are explored across four 1-hour modules:
To access the modules visit LGBTIQ+ Health Australia’s e-Learning site.
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has released its final report. The report made 222 recommendations, including a recommendation for a new framework and national principles for supported decision-making. This recommendation is aimed at ensuring that substitute decision-making only happens as a last resort and in the least restrictive manner. Written responses to the final report from the Australian Government and the state and territory governments are expected to be published by 31 March 2024.
Victoria, Queensland, and the Australian Capital Territory have laws on supported decision-making. In all other States and Territories, supported decision-making can still occur in practice, even without the existence of laws.
To find out more about supported decision-making and substitute decision-making visit our State and Territory treatment decisions webpages and select your jurisdiction.
A qualitative study of experiences of institutional objection to medical assistance in dying in Canada: Ongoing challenges and catalysts for change. Eliana Close et al, BMC Medical Ethics, 2023
In June 2016, Canada legalised medical assistance in dying (MAiD). From the outset, some healthcare institutions have refused to allow aspects of MAiD onsite, resulting in patient transfers for MAiD assessments and provision. There have been media reports highlighting the negative consequences of these “institutional objections”, however, very little research has examined their nature and impact. This study reports on findings from 48 semi-structured qualitative interviews conducted with MAiD assessors and providers, MAiD team members, and family caregivers on their experiences with institutional objection.
Participants reported that many institutions’ objections had softened over time, lessening barriers to MAiD access and adverse impacts on patients and health practitioners. Nevertheless, some institutions, particularly faith-based ones, retained strong objections to MAiD, resulting in forced transfers and negative emotional and psychological impacts on patients, family members, and health practitioners. Reform is needed to minimise the negative impacts on patients, their caregivers, and health practitioners involved in MAiD practice.
Mental Capacity, Dignity and the Power of International Human Rights. Julia Duffy, Cambridge University Press, 2023
Issues of legal capacity frequently arise at end of life for all of us. This book traces the development of legal and policy responses to people who may be determined to have limited legal capacity due to intellectual disability, acquired brain injury, mental health conditions or aged dementia. The policy trajectory in the West has been from: from a charity, to a medical, to a social model of disability; from paternalism to autonomy; from institutionalisation to guardianship to supported decision-making. The United Nations Convention on the Rights of Persons with Disabilities now enshrines a ‘right to legal capacity’ and a right to support for legal capacity (i.e. supported decision-making). This book examines what this means ethically and legally for people with severe and profound cognitive disabilities. It argues for a human rights framework that gives equal weight to economic, social and cultural rights as civil and political rights, to maximise autonomy, uphold human dignity and ensure inclusive equality.
Strengthening the Response to Elder Financial Abuse: a law reform agenda for Enduring Powers of Attorney. Kelly Purser et al, UNSW Law Journal Forum, 2023
The 2019 National Plan to Respond to Elder Abuse agreed upon by the Council of Attorneys-General noted the development of a national enduring power of attorney (EPA) register as a short- to medium-term priority. This article argues that progressing a mandatory online register is premature, especially before an evidence-based approach to reforming enduring documents broadly has been adequately developed and considered. It further argues that before specific law reform proposals are developed, there are significant ‘foundational’ challenges that require examination, particularly in relation to an EPA register. This article contributes to the dialogue around four of these fundamental considerations:
1.the role of a human rights framework, as advocated by the ALRC;
2.capacity and the assessment of incapacity;
3.the role technology could and/or should play in the valid execution of various documents, including EPA;
4.the importance of gathering rigorous data, including data about lived experiences.
Victoria’s Voluntary Assisted Dying (VAD) Commission has released its seventh report on the operation of VAD in Victoria, for the period 1 July 2022 to 30 June 2023. It reports that since the commencement of VAD in June 2019:
During the reporting period, there were no deaths that required further investigation by the State Coroner, and no referrals made to the Chief Commissioner of Police or to the Australian Health Practitioner Regulation Agency.
The Northern Territory Parliament has passed new legislation to govern health care decision-making where a person has impaired decision-making capacity. The Health Care Decision Making Act 2023 (NT) is due to commence on a day to be fixed, or by 18 May 2025. It will introduce:
It will also address the circumstances in which:
The 4th International Conference on End of Life: Law, Ethics, Policy and Practice (ICEL4) will be hosted in Salt Lake City, Utah from 6 - 8 March 2024. Abstracts have been extended to 15 September 2023. Abstracts are sought on topics including medical assistance in dying (VAD), palliative sedation, withholding and withdrawing potentially life-sustaining treatment, palliative sedation, Advance Care Directives, and more.
A tentative program is available. Registration is now open. For queries contact Carrie Grant at cgrant@conferences.utah.edu .
Voluntary assisted dying: A discussion of key legal issues for Australian nurses. Lindy Willmott et al, Collegian, 2023
Nurses have a significant role in caring for and supporting patients at the end of life, and it is likely that they will be impacted, at some point, by VAD practice. In some states, nurses who want to be involved in VAD and satisfy specified eligibility criteria will be able to administer the VAD medication to eligible patients. This article explores implications of the VAD legislation for nurses, seeking to clarify the role of nurses to promote practice consistent with their legal roles, obligations, and protections. It identifies three key legal issues for nurses in relation to VAD: (i) conversations about VAD (including prohibition provisions), (ii) administration of VAD medication, and (iii) conscientious objections (and any associated obligations).
Health care providers’ early experiences of assisted dying in Aotearoa New Zealand: An evolving clinical service. Jeanne Snelling et al, BMC Palliative Medicine, 2023
Exploring the experiences of health providers in the initial stage of the implementation of the End of Life Choice Act 2019 is vital to inform the ongoing development of safe and effective assisted dying (AD) practice, policy and law. This article aims to explore the early experiences of health care providers (HCPs) who do and do not provide AD services seven months after legalisation of AD to provide the first empirical account of how the AD service is operating in New Zealand’s distinctive healthcare environment and cultural context.
26 HCPs participated in this qualitative exploratory design study which used semi-structured individual and focus group interviewing with a range of HCPs. Through a process of thematic analysis four key themes were identified: (1) Difference in organisational response to AD; (2) challenges in applying the law; (3) experiences at the coal face; and (4) functionality of the AD system. A range of barriers and enablers to successful implementation of AD were described.
Preferences for palliative and end-of-life care: A systematic review of discrete choice experiments. Qing Xia et al, Value in Health, 2023
Understanding what matters most to patients and their caregivers is fundamental to delivering high-quality care. This systematic review aimed to characterize and appraise the evidence from discrete choice experiments eliciting preferences for palliative care. 17 studies spanning 11 countries were included with a total of 117 individual attributes extracted and thematically grouped into 8 broad categories and 21 subcategories. Clinical outcomes including quality of life, length of life, and pain control were the most frequently reported attributes, whereas attributes relating to psychosocial components were largely absent. Differences between respondent cohorts were observed in the emphasis on other attributes such as access to care, timely information, and low risk of adverse effects (prioritised by patients), as opposed to cost, quality, and delivery of care (prioritised by proxies).
The End of Life Law for Clinicians (ELLC) national training program has been refunded by the Australian Government Department of Health and Aged Care to continue to deliver quality training for health professionals on Australian laws relating to end of life decision-making.
ELLC is a result of years of research by Professors Ben White and Lindy Willmott from QUT's Australian Centre for Health Law Research on health professionals’ knowledge of end of life law. The course was developed with Distinguished Professor Patsy Yates (Faculty of Health), health law researcher Professor Shih-Ning Then, Postdoctoral Research Fellow Dr Rachel Feeney, and Project Manager Penny Neller.
Professor Willmott said not understanding the law causes anxiety and risks for health professionals.
“It’s important for health professionals to understand the law at such an emotionally charged time, and important for the patient that their legal rights and end of life choices are followed when they die,” Professor Willmott said.
ELLC has 13 free modules on topics including Advance Care Directives, capacity and consent to treatment, substitute decision-making, and withholding and withdrawing life-sustaining treatment. Its latest modules focus on decision-making with Aboriginal and/or Torres Strait Islander Peoples, families, and communities, and people from four diverse health populations. Into the future ELLC will develop a new course for health professionals working in aged care.
The training is free. CPD points may be claimed, and Certificates of Completion are available. Register at the ELLC training website.
Tasmania’s Voluntary Assisted Dying (VAD) Commission has released its first six month report on the operation of VAD in Tasmania. It reports that from 23 October 2022 to 23 April 2023:
The 4th International Conference on End of Life and the Law (ICEL4) will be hosted in Salt Lake City, Utah from 6 - 8 March 2024. Abstracts are now open. Abstracts are sought on topics including medical assistance in dying (VAD), palliative sedation, withholding and withdrawing potentially life-sustaining treatment, palliative sedation, Advance Care Directives, and more.
A tentative program can be viewed here. Registration information will be coming soon. For queries contact Carrie Grant at cgrant@conferences.utah.edu .
Should terminally ill young people be able to choose voluntary assisted dying? The ACT is considering it. Katrine Del Villar, The Conversation, 4 July 2023
As the Australian Capital Territory's (ACT) government considers legalising voluntary assisted dying (VAD), the results of community consultation on the topic suggest that the ACT’s proposed legislation may differ significantly from the model adopted by other Australian states. One controversial difference is the proposal to allow people under 18 to access VAD if they have a terminal illness. This article explores this proposal and examines it by reference to other countries who have permitted access by minors to VAD or euthanasia.
Legal issues in end-of-life care for speech-language pathologists and social workers: A scoping review. Rachel Feeney et al, International Journal of Speech-Language Pathology, 2023
There has been little analysis of the specific legal issues relevant to allied health professionals working in end of life care. This scoping review was undertaken to identify and examine the extent, range, and nature of literature on the legal issues relevant to end of life practice for Australian speech-language pathologists and social workers, including current gaps. Twenty documents were included, spanning various document types. Documents demonstrated that the two professions encounter similar legal issues, and that key gaps exist in the literature. Findings will inform these professionals of the legal issues relevant to their clinical practice and the development of further resources.
Health care providers’ early experiences of assisted dying in Aotearoa New Zealand: An evolving clinical service. Jeanne Snelling et al, BMC Palliative Care, 2023
This article explores the early experiences of health care providers (HCPs) who do and do not provide assisted dying (AD) services seven months after legalisation of AD. It provides the first empirical account of how the AD service is operating in New Zealand’s distinctive healthcare environment and cultural context. Semi-structured individual and focus group interviews were undertaken with 26 health care professionals. A range of barriers and enablers to successful implementation of AD were described. Adoption of open and transparent organisational policies, ongoing education of the workforce, and measures to reduce stigma associated with AD are necessary to facilitate high-quality AD service provision.
VAD obligations of Residential Aged Care Providers and Workers. Katherine Waller, Aged Care Today, Winter 2023.
With VAD operating in all Australian states by the end of November 2023, residential aged care facilities will need to be prepared for what this will mean for them, their staff and the residents in their care. This article provides an overview of the key legal rights and obligations of health professionals and aged care facilities regarding VAD. To learn more, visit the recently developed End of Life Directions for Aged Care (ELDAC) End of Life Toolkit VAD resources for health professionals and aged care institutions.
The End of Life Law for Clinicians national training program has launched a new free online training module for all health professionals about Inclusive end of life decision-making with people from diverse populations. It focuses on decision-making with:
The module aims to help health professionals understand legal considerations when caring for people from diverse populations at the end of life, to deliver high-quality, safe, inclusive, and accessible care for individuals, their families and support networks.
This training may attract CPD points. Register for free at the Palliative Care Education & Training Collaborative.
Researchers at the Australian Centre for Health Law Research, QUT conducted an Australian-first study investigating the barriers to and facilitators of access to voluntary assisted dying (VAD) in Victoria. The study involved interviews with a person who had applied for VAD or their family caregivers who had supported a person through the process.
Findings from the study, published in The Medical Journal of Australia, indicate that overall, access to VAD in Victoria has improved, and people generally felt supported while navigating the application process once they found a coordinating practitioner or a navigator. Dedicated individuals, including care navigators, doctors, and pharmacists, are key facilitators of access.
However, the length of the VAD application process and delays, difficulty finding a willing doctor, institutional objection, inability to use telehealth for VAD consultations, and inability of doctors to start VAD discussions with patients often still made patient access difficult.
Recommendations to improve access to VAD include removing barriers to doctors initiating VAD discussions and using telehealth, introducing a requirement for doctors to refer on patients who want VAD, and measures to increase the pool of doctors willing and qualified to be involved in VAD
To find out more, view the study research briefing, or listen to this MJA Podcast with Professor Ben White and Ruthie Jeanneret.
South Australia's Voluntary Assisted Dying Review Board has released its first quarterly report on the operation of VAD in South Australia. It reports that from 31 January to 30 April 2023:
There is still time to submit an abstract for the 2023 Australian Association of Bioethics & Health Law (AABHL) conference from 19-22 November 2023, hosted by AABHL and the Australian Centre for Health Law Research at the Queensland University of Technology, Brisbane.
This year’s conference focuses on the ongoing change, impact and opportunities that underlie bioethics and health law. AABHL invites abstracts related to this theme, which includes but is not limited to:
To submit an abstract visit the conference website. Abstracts close 31 July 2023. Early-bird registration closes 29 September 2023.
National Palliative Care Week 2023 (21-27 May) seeks to inspire conversations about matters of life and death and build awareness and recognition of the people at the heart of quality palliative care.
One aspect of palliative care that is less well known is the law on providing medication for pain and symptom relief. In an article published in Palliative Medicine, researchers from QUT and their colleagues spoke to nurses about their concerns when providing pain and symptom relief to patients near the end of life. Less than half of those interviewed knew the law in this area, including the doctrine of double effect, which protects health professionals who provide appropriate pain and symptom relief at the end of life.
Knowing the law can help:
Learn more about law on providing pain and symptom relief in these resources:
The Northern Territory Government has introduced the Health Care Decision Making Bill 2023 (the Bill) to govern health care decision-making where an adult has impaired decision-making capacity. If passed, the Bill will introduce:
The Australian Centre for Health Law Research (ACHLR), QUT and the Australian Association of Bioethics & Health Law (AABHL) warmly invite you to attend the 2023 AABHL conference from 19-22 November at the Queensland University of Technology, Brisbane.
This year’s conference focuses on the ongoing change, impact and opportunities that underlie bioethics and health law. We invite abstracts related to this theme, which includes but is not limited to:
To submit an abstract visit the conference website. Abstracts close 31 July 2023.
Does death determination by neurologic criteria require irreversible or permanent cessation of functions? By Andrew McGee and Dale Gardiner in Death Determination by Neurologic Criteria. James L Bernat and Ariane Lewis (eds), Springer, 2023.
In this chapter, the authors discuss whether death requires permanent or irreversible cessation of function. They argue that death requires only permanent cessation of function, ultimately focusing on the application of this argument to determining death by neurologic criteria. Influential defences of irreversibility, such as that of Don Marquis, are subjected to critical scrutiny.
Decision-making About Premortem Interventions for Donation: Navigating Legal and Ethical Complexities. Shih-Ning Then et al, Transplantation, 2023.
Premortem interventions (PMIs) for organ donation play a vital role in preserving opportunities for deceased donation or increasing the chances of successful transplantation of donor organs. Although ethical considerations relating to use of particular PMIs have been well explored, the ethical and legal aspects of decision-making about the use of PMIs have received comparatively little attention. This article examines the fundamental questions of who should have the authority to make decisions about the use of PMIs on behalf of a potential donor and how such decisions should be made.
What do health care professionals want to know about assisted dying? Setting the research agenda in New Zealand. Jessica Young et al, BMC Palliative Care, 2023.
New Zealand recently introduced laws permitting terminally ill people to request and receive assisted dying (AD) in specified circumstances. Given the nature and complexity of this new health service, research is vital to determine how AD is operating in practice. Using an adapted research prioritisation methodology, the researchers identified 15 potential AD research topics. A mixed-methods survey of health professionals was undertaken where respondents were asked to rate the 15 topics according to the relative importance for research to be conducted on each issue. Based on early experiences of the implementation of the AD service, health professionals provided important insights into what research should be prioritised post-legalisation of AD.
A study by researchers at the Australian Centre for Health Law Research has found that a range of harms occur where institutions e.g. hospitals or palliative care settings object to voluntary assisted dying (VAD).
The study, conducted through 28 interviews with family caregivers and a VAD patient, explored their experience of seeking VAD in Victoria. 17 participants described a range of harms that institutional objections caused including:
Objections generally occurred in Catholic facilities or palliative care settings and stopped some or all of the VAD process happening onsite. Most commonly patients were not allowed to:
The researchers recommended that institutions find ways to support patients’ choice for VAD that do not conflict with the institution’s values, and improvements to regulation of VAD in Victoria. Read the full article about the study here.
National Advance Care Planning Week was recently recognised around Australia. It’s a time for all Australians to start a conversation about what matters most to them, and to make their health care and medical treatment preferences known. It is also an opportunity to learn about the law on Advance Care Directives by:
Other useful resources are available from Advance Care Planning Australia.
The 4th International Conference on End of Life and the Law (ICEL4) will be hosted in Salt Lake City, Utah from 6 - 8 March 2024.
This multidisciplinary conference, first hosted by QUT’s Australian Centre for Health Law Research in 2014, will focus on legal, ethical, and empirical analyses of challenges in end of life care and choice. Potential topics include medical assistance in dying (VAD), palliative sedation, Advance Care Planning, and others.
Registration information will be coming soon. For queries contact Carrie Grant at cgrant@conferences.utah.edu .
Voluntary assisted dying in Australia: A comparative and critical analysis of state laws . Katherine Waller et al, University of New South Wales Law Journal, 2022.
With Victoria being the first state to legalise VAD, other Australian States largely based their laws on the Victorian framework. However, in light of the early Victorian experience, some States have significantly departed from the Victorian model. This comparative analysis identifies and evaluates some of the key variations between Australian VAD laws. It highlights opportunities for reform which may inform the legislatively mandated reviews of each State’s VAD laws, and potential law reform in the Territories.
Facilitating regional and remote access to voluntary assisted dying in Western Australia: targeted initiatives during the law-making and implementation stages of reform. Lindy Willmott et al, Rural and Remote Health, 2023.
Australians living in regional and remote communities face several barriers when accessing high quality health care. Western Australia is the second Australian state to implement VAD laws and, to date, is the jurisdiction with the greatest need to address access inequities in regional and remote communities due to its vast area. This article identifies and explores initiatives introduced by the WA Government to address regional and remote access inequities.
Voluntary assisted dying (VAD) commenced operation in Queensland and South Australia in January 2023.
Unlike the other Australian States where VAD is operating, the laws in Queensland and South Australia impose specific obligations on residential aged care facilities (RACFs) and other health services e.g. public and private hospitals to enable a person to access VAD. For example, in both States, all residential facilities must allow a resident to receive information about VAD on request, and to make a first or final request for VAD at the facility. Further information is available in this new ELDAC factsheet.
Factsheets for RACFs in Victoria, Tasmania, and Western Australia, and health professionals working in aged care are available in the ELDAC End of Life Law Toolkit. For information about the eligibility criteria and processes for VAD in each State:
In New South Wales, VAD is being implemented and will commence on 28 November 2023. For more on what to expect regarding VAD in 2023 visit The Conversation.
The ACT Government is undertaking community consultation on voluntary assisted dying. Feedback is sought on:
Submissions close on 6 April 2023. To find out more visit the consultation website.
In this new podcast, Penny Neller from End of Life Law for Clinicians and ACHLR interviews Dr Jim Howe, a neurologist with over 50 years’ experience in clinical practice. They explore Jim’s experience of the interaction between law and medicine arising from his time caring for Tony Bland, a victim of the 1989 Hillsborough football disaster, and his involvement in the landmark UK case Airedale NHS Trust v Bland. Dr Howe also discusses his involvement with voluntary assisted dying in Victoria.
First Nations’ Perspectives in Law-Making About Voluntary Assisted Dying. Sophie Lewis et al, Journal of Law and Medicine, 2022
This article critically analyses how Indigenous perspectives both contributed to, and were engaged with, during the voluntary assisted dying law reform processes in Victoria and Western Australia. Findings reveal the sophistication in how Indigenous organisations and individuals engaged with this issue and highlight the critical importance of not universalising Indigenous perspectives. This article concludes by considering how Indigenous voices can meaningfully influence Australian law reform processes.
What next for voluntary assisted dying in Australia? Ben White and Lindy Willmott, Australian Health Review, 2023
As all Australian states now have voluntary assisted dying legislation, and with Australia’s Territories likely to follow, the focus shifts to how these systems are operating in practice and can be improved. This article discusses evidence to date showing that voluntary assisted dying has been implemented safely, but with some access challenges remain. It concludes that the voluntary assisted dying system and legislation must be reviewed, and such reviews must be evidence-based.
A New Defense of Brain Death as the Death of the Human Organism. Andrew McGee et al, The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, 2023
In light of well-known criticisms, this article provides a new rationale for equating brain death with the death of the human organism. It claims that these criticisms can be answered if we accept that we have slightly redefined the concept of death when equating brain death with death simpliciter. Accordingly, much of this article defends the legitimacy of redefining death against objections, before turning to the specific task of defending the new rationale for equating brain death with death as slightly redefined.
Diversity, dignity, equality and best practice: a framework for supported decision-making. Christine Bigby et al, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, 2023
This report aims to understand the significance of supported decision-making to the lives of people with cognitive disabilities. It outlines the essential elements of supported decision-making common to those with cognitive disabilities, and identifies key implementation issues. The report articulates the benefits of supported decision-making, setting out nine principles and eight essential elements of a ‘Diversity, Dignity, Equity and Best Practice Framework for Supported Decision-making’. It concludes by recommending implementation strategies.
The Restoring Territory Rights Bill 2022 (Cth) (the Bill) has been passed by the Australian Parliament, enabling the Northern Territory and the Australian Capital Territory to introduce their own voluntary assisted dying (VAD) laws.
The Bill has the effect of overturning a 25-year ban that prevented the Territories from introducing VAD laws.
Between March 1996 and March 1997, voluntary euthanasia and physician-assisted suicide were legal in the Northern Territory under the Rights of the Terminally Ill Act (NT) (the NT Act). However, in 1997 the Australian Government intervened, using the Territories power in the Australian Constitution (which gives the Commonwealth powers to legislate for the Territories) to pass legislation overturning the NT Act and preventing the Territories from passing similar laws.
It is expected the ACT will introduce VAD laws in late 2023 or early 2024. The NT government has stated that it has no plans to legislate on VAD at this stage.
All Australian States have legalised VAD. For information about each States' VAD laws visit our Voluntary Assisted Dying webpage. If you are a health professional, learn more about your legal obligations in relation to VAD in the ELDAC End of Life Law Toolkit's latest VAD resources.
Tasmania’s new Advance Care Directives laws commenced on 21 November 2022. The new laws:
The End of Life law in Australia website is being updated to provide an overview of the new laws. Further information about Advance Care Directives is available from the Tasmanian Department of Health.
A new Aged Care Code of Conduct commenced on 1 December 2022 to improve the safety and quality of life of people receiving aged care. The Code outlines minimum standards of conduct for approved aged care providers and their governing persons. It also applies to aged care workers who are employed, engaged or contracted by aged care providers.
Resources about the Code are available from the Aged Care Quality and Safety Commission.
This article argues that medical practitioners are poorly compensated for their time and services in supporting patients through the VAD process. Inadequate remuneration, in addition to being unfair and unethical, is likely to impact the sustainability of the already stretched VAD workforce and hence the ability of patients to access VAD in the future. This article calls for uniform and transparent funding arrangements to ensure medical practitioners are fairly compensated for the medical services they provide.
Voluntary assisted dying: estimating life expectancy to determine eligibility. Sharon Nahm, Martin Stockler and Belinda Kiely, Medical Journal of Australia, 2022.
This article highlights the uncertainty experienced by doctors regarding whether their patients are eligible for VAD under current legislation. Estimating life expectancy is inherently uncertain and imprecise, with the current legislation in the Australian States requiring doctors to predict an unspecified probability of a patient dying within a certain period for them to be eligible of VAD. It is argued that VAD legislation should be improved to include clearer definitions and explanations using probabilistic terminology that corresponds with how prognoses are best formulated and communicated.
Impact of a prospective feedback loop on care review activities in older patients at the end of life. A stepped-wedge randomised trial. Christine Brown et al, BMC Geriatrics, 2022.
This study examined the Intervention for Appropriate Care and Treatment trial, which aimed to increase appropriate care and treatment decisions through the implementation of a prospective feedback loop. Results indicated that there was a reduction in the review of care directive measures during the intervention compared with usual care. They also showed that there was little change in palliative care referrals in any hospital. These results were attributed to a combination of the intervention design and health system challenges due to the pandemic that highlight the complexity of providing more appropriate care at the end of life.
Voluntary assisted dying (VAD) is operating in Tasmania following the commencement of the End-of-Life Choices (Voluntary Assisted Dying) Act 2021 (Tas) on 23 October 2022.
To be eligible to access VAD in Tasmania a person must:
Further information is available from the Department of Health Tasmania.
Tasmania is the third Australian State where VAD is operating. VAD will commence in Queensland on 1 January 2023, South Australia on 31 January 2023, and New South Wales on 28 November 2023. Learn more about VAD laws on our webpage, or in the free End of Life Law for Clinicians online training program (Module 11 Voluntary assisted dying).
End of Life Directions for Aged Care (ELDAC) has released a series of new factsheets to support health professionals in aged and home care, as well as RACFs to understand their roles and legal rights and obligations in relation to VAD. There is also a frequently asked questions factsheet.
Though focused on aged care, these resources are relevant to health professionals across all health settings. Access the factsheets, and other resources about end of life decision-making in aged care, in the ELDAC End of Life Law Toolkit.
In this Gwandalan webinar, Professor Lindy Willmott (End of Life Law for Clinicians, QUT) and nurse practitioner Kat Hooper (QUT) explore VAD laws and caring for Aboriginal and Torres Strait Islanders peoples at the end of life. They focus on a fictional clinical study involving a person seeking VAD.
For free resources and training about palliative and end of life care and Aboriginal and Torres Strait Islander peoples visit:
The Australian Commission on Safety and Quality in Health Care is seeking feedback on the updated National Consensus Statement: Essential elements for safe and high-quality end-of-life care. Feedback is sought through a survey that will be open until 14 January 2023.
The Australian Government Department of Health and Aged Care is seeking feedback on the revised Aged Care Quality Standards. The consultation closes on 25 November 2022.
Better Regulation of End-Of-Life Care: A Call for a Holistic Approach. Ben White, Lindy Willmott and Eliana Close, Journal of Bioethical Inquiry, 2022.
Existing approaches to regulation, and research into how that regulation could be improved, have tended to focus on a single regulatory instrument (e.g., just law or just ethical codes). As a result, there has been a failure to capture holistically the various forces that guide end-of-life care. This article proposes a response to address this, identifying “regulatory space” theory as a candidate to provide the much-needed holistic insight into improving regulation of end-of-life care. It concludes with practical implications of this approach for regulators and researchers.
Impact of a prospective feedback loop on care review activities in older patients at the end of life. A stepped-wedge randomised trial. Christine Brown, Xing Lee, Alison Farrington et al, BMC Geriatrics, 2022.
Hospitalisation rates for older people are increasing, with end-of-life care becoming a more medicalised experience. Innovative approaches are warranted to support early identification of the end-of-life phase, communicate prognosis, provide care consistent with people’s preferences, and improve the use of healthcare resources. The Intervention for Appropriate Care and Treatment (InterACT) trial, led by researchers from the Australian Centre for Health Services Innovation and Centre for Healthcare, Queensland University of Technology, aimed to increase appropriate care and treatment decisions for older people at the end of life, through implementation of a prospective feedback loop. This paper reports on the care review outcomes.
Navigating end of life decision-making can be particularly difficult when there are children with life-limiting conditions involved. In this blog post, Shih-Ning Then discusses the legal issues raised when providing clinical care to children at the end of life, and the importance of clinicians having knowledge of the law in this area.
This article discusses research into the hesitancy of some nurses to administer pain and symptom relief to patients at the end of life due to fears of legal liability. It also considers the doctrine of double effect, which can provide legal protection to health professionals who appropriately administer pain and symptom relief at the end of life.
End of Life Law for Clinicians (ELLC) is delighted to announce that a new online module, Aboriginal and/or Torres Strait Islander peoples and end of life law is now available.
Designed with Indigenous health professionals and community across Australia, the module aims to help all health professionals:
This training is free and may attract CPD points. Register at the Palliative Care Education & Training Collaborative.
The Australian Healthcare and Hospitals Association (AHHA) and and End of Life Law for Clinicians (QUT) are pleased to invite you to join them for a free webinar on end of life law on 13 October 2022.
This interactive webinar will explore, though a clinical case study, some of the legal issues that arise in end of life, aged and palliative care. Legal topics covered will include capacity and consent to medical treatment, substitute decision-making, the provision of pain relief and futile or non-beneficial treatment.
The webinar will be delivered by Penny Neller, National Palliative Care Projects Coordinator, Australian Centre for Health Law Research, QUT and Dr Paresh Dawda, Director and Principal of Prestantia Health, General Medical Practitioner, academic and researcher.
Date and time: Thursday 13 October 2022, 12:30 pm to 1:30 pm AEDT.
Register: Click here.
The Advance Project Dementia, led by HammondCare and funded by the Australian Government, has launched a new, free Dementia Toolkit. It supports clinicians, managers, and careworkers in aged care and primary care to build greater confidence and skills in advance care planning and palliative care for people living with dementia.
Voluntary Assisted Dying for (Some) Residents Only: Have States Infringed S 117 of the Constitution? Katrine Del Villar and Amelia Simpson, Melbourne University Law Review, 2022.
All six Australian states have passed laws which now permit (or will, once commenced, permit) voluntary assisted dying (‘VAD’) in limited circumstances. One controversial feature of the laws is that access is restricted to patients who have been resident in the providing state for at least 12 months. This article considers the possible justifications for this restricted access and, ultimately, whether it can be reconciled with section 117 of the Australian Constitution, which proscribes discrimination on the basis of out-of-state residence. It finds that while excluding non-residents from VAD schemes may be proportionate to non-discriminatory policy goals, the exclusion of new residents of a state is harder to defend and leaves these laws open to constitutional challenge.
End of Life Law for Clinicians (ELLC) is excited to announce its new online training module, Module 12: Aboriginal and/or Torres Strait Islander peoples and end of life law will be launched in September.
Designed for all medical practitioners and students, nurses, and allied and other health professionals, the module aims to help clinicians:
The module has been developed in collaboration with Indigenous health professionals from across Australia. To be updated when the module is available email endoflifelaw@qut.edu.au . To complete the free ELLC training program register at the ELLC training website.
Caring@home has also released a new resource, the Palliative Care Clinic Box, to assist health professionals to support Aboriginal and Torres Strait Islander peoples receiving palliative care at home, and their families.
Voluntary assisted dying laws in all Australian States impose rights and obligations upon aged care health professionals, and in some States, aged care services. In this new Australian Ageing Agenda article ELDAC’s End of Life Law Toolkit developers explore the key laws aged care health professionals and services need to know about VAD.
Learn more about VAD in aged care in the ELDAC End of Life Law Toolkit. For VAD law in your State visit End of Life Law in Australia's VAD webpage.
The 8th Advance Care Planning International (ACP-i) Conference will be hosted in Singapore from 24 – 27 May 2023. The theme is ACP-in-Cultural Diversity: More Similar than Different.
The conference will be delivered both physically and virtually. It will bring together over 800 delegates including health care and social service administrators, clinical practitioners, researchers, academics and policy makers. For more information or to register visit https://www.acp-i.org/ .
Voluntary Requests or Vulnerable Adults? A Critique of Criminal Sentencing in Assisted Suicide and ‘Mercy Killing’ Cases. Katrine Del Villar et al, University of New South Wales Law Journal, 2022.
This article explores the criminal law’s response to cases of ‘mercy killing’ or assisting suicide, in which relatives or friends act outside the law to end the suffering of a loved one with a terminal or chronic illness. A pronounced leniency in sentencing of these cases is found, with analysis of judicial reasons confirming that the traditional aims of sentencing are inapposite in these circumstances. It is concluded that the criminal law simultaneously provides both too much and not enough protection for members of the community. Recommendations include law reform to enable judges to make a greater distinction between voluntary and non-voluntary assisted suicides and mercy killings.
A cross-sectional study of the first two years of mandatory training for doctors participating in voluntary assisted dying. Lindy Willmott et al, Palliative and Supportive Care, 2022.
Voluntary assisted dying was legalised in Victoria, Australia in June 2019. Victoria was the first jurisdiction in the world to require doctors to undertake training before providing voluntary assisted dying. This study examines data from doctors who completed the mandatory training in the first two years of the voluntary assisted dying system’s operation (up to 30 June 2021). It describes the doctors who are undertaking VAD training, their post-training attitudes towards VAD participation, and their experiences of the mandatory training.
Mapping the Legal Regulation of Voluntary Assisted Dying in Victoria: The Coherence of a New Practice within the Wider Legal System. Ben White et al, Journal of Law and Medicine, 2022.
This article undertakes the first comprehensive mapping exercise of the legal regulation of voluntary assisted dying in Victoria. Despite the detailed nature of the Voluntary Assisted Dying Act 2017 (Vic), this analysis reveals that voluntary assisted dying is also regulated by a diverse array of other law: a further 20 pieces of legislation and 27 broad areas of law. In some instances, this legal regulation beyond the principal voluntary assisted dying legislation is significant for how the voluntary assisted dying system operates in practice. Findings include identifying areas of significant incoherence and the implications of this for law reformers, policy-makers, and users of the law, including patients, families, health practitioners, and health service providers.
Assisted Deaths Prior to the Voluntary Assisted Dying Act 2017 (Vic): Would Patients Have Met the Eligibility Criteria to Request Voluntary Assisted Dying? Lindy Willmott et al, Journal of Law and Medicine, 2022.
Unlawful assisted dying practices have been reported in Australia for decades. Voluntary assisted dying is now lawful in Victoria and Western Australia in limited circumstances, and will soon be lawful in a further three Australian states. This article explores whether, if that Act had been in operation at the relevant time, these patients would have been eligible to request voluntary assisted dying, having regard to their decision-making capacity and their disease, illness or medical condition. Many of these patients would not have been eligible to request voluntary assisted dying had the legislation been operational, primarily because they lacked decision-making capacity. As voluntary assisted dying is lawful only in a narrow set of circumstances, unlawful assisted deaths may continue to occur in those states where voluntary assisted dying is legal
The Program of Experience in the Palliative Approach Learning Guide for Paramedics. PEPA/IPEPA Project Team, QUT, 2022.
This guide supports paramedics to deliver high quality care by covering the philosophy and practice of palliative care, and the role that this specialty has in providing palliative care. Topics covered include effective communication with patients and their families, symptom management, legal and ethical considerations, and the role of the broader healthcare team in providing palliative care.
A Bill to quash Commonwealth laws that currently prevent the Northern Territory and the Australian Capital Territory from legislating on VAD passed the Federal House of Representatives this week. If passed by the Senate, the Restoring Territory Rights Bill 2022 will clear the way for the Territories' parliaments to introduce VAD laws, as all Australian State parliaments have done. The Bill is to be debated by the Senate at a future date.
A Melbourne GP has brought a case in the Federal Court of Australia to clarify the definition of suicide under the Commonwealth Criminal Code. The outcome of this case could confirm whether it is lawful for doctors to use telehealth services to communicate with patients about voluntary assisted dying (VAD).
Currently the Commonwealth Criminal Code Act 1995 prohibits a person from counselling, inciting, promoting, or providing instruction on suicide through a ‘carriage service’, which includes phones, emails and telehealth services. VAD has been legalised in all Australian States, but it is unclear whether VAD is considered suicide under the Commonwealth Code when it is self-administered. Therefore, it remains unresolved whether medical practitioners who discuss VAD with their patients via a carriage service (which is lawful under State legislation) are committing a Commonwealth offence.
This uncertainty has implications for access to VAD by people who may only be able to discuss VAD with their medical practitioner by using a carriage service e.g. people living in regional or rural areas, people who are unable to travel due to their illness, and some people with a disability. Further implications of this are considered in this article.
In an article recently published in the Monash University Law Review, the authors argue that the lack of clarity on whether VAD is considered suicide leaves clinicians under an ‘unintended gray cloud’ - unsure about whether they can use telehealth to consult with patients about VAD. This uncertainty is likely to significantly reduce the number of clinicians willing to do so, which in turn will affect the availability of VAD until the matter is resolved.
SA Health has announced the commencement date for VAD in South Australia has been brought forward to January 2023.
Queensland Health has released new resources to assist healthcare workers, health services and others to understand their responsibilities and roles under the Voluntary Assisted Dying legislation. These include:
WA Health has released its revised Advance Health Directive and new advance care planning resources, including a Guide to Making an Advance Health Directive in WA. For more information about the law on Advance Heath Directive in WA visit our webpage.
Voluntary assisted dying and the legality of using a telephone or internet service: The impact of Commonwealth ‘Carriage Service’ offences. Katrine Del Villar et al, Monash University Law Review, 2022.
A significant hurdle to the implementation of VAD laws in Victoria and Western Australia has been prohibitions in the Commonwealth Criminal Code on using a carriage service (including the telephone or internet) to counsel, promote or provide instruction on suicide. These provisions, enacted when VAD was unlawful in every Australian jurisdiction, have led state governments to instruct health practitioners to avoid discussing or facilitating VAD via telehealth. This article examines whether these concerns are founded and evaluates the extent of Commonwealth criminal liability that health practitioners might face for engaging in various conduct under the State assisted dying laws.
The article argues that although the legal position is untested VAD would likely meet the definition of ‘suicide’ under Australian law and hence fall under the Commonwealth Criminal Code. The article then evaluates the extent of potential criminal liability for using a carriage service in each step of the VAD process. It concludes that there are areas with real legal risk, especially for activities that directly facilitate VAD, requiring urgent reform of the Commonwealth law.
Junior Medical Officers’ knowledge of advance care directives and substitute decision making for people without decision making capacity: a cross sectional survey. Jamie Bryant et al, BMC Medical Ethics, 2022.
This study examines the knowledge of Junior Medical Officers surrounding Advance Care Directives and substitute decision-making. The findings indicate that further education and training is needed to improve their knowledge in these areas.
Junior medical doctors’ decision-making when using advance care directives to guide treatment for people with dementia: a cross-sectional vignette study. Amy Waller et al, BMC Medical Ethics, 2022.
This study explores the decision-making of junior medical doctors regarding Advance Care Directives used to guide treatment for individuals with dementia. Critical gaps in compliance with the laws relating to Advance Care Directives were found. Further education and training is needed to guide junior doctors’ clinical decision-making and ensure compliance with the law.
Voluntary assisted dying (VAD) laws have now been passed in all Australian States, with New South Wales recently becoming the final state to legalise VAD. The following free resources have been updated to include New South Wales’ VAD laws:
In this new End of Life Law for Clinicians video, Wendy Pearse, Speech Pathologist, discusses a clinical case involving shared decision-making with a person’s family about withdrawal of futile or non-beneficial treatment.
To learn more about the law on this topic register for the ELLC online training modules and complete Module 8 (Futile or non-beneficial treatment). CPD points may be claimed. Certificates of completion are available.
Advance Care Planning Australia has launched an Advance Care Planning Improvement Toolkit for each State and Territory. The toolkits contain useful resources (including audit tools) to support health and aged care services to improve advance care planning at the organisational level.
The Western Australian Department of Health’s End of Life Care Program has also revised WA's Advance Health Directive and developed new advance care planning resources. These will be launched on Thursday 4 August 2022. To register for the launch visit Eventbrite.
QUT is offering a new PhD Scholarship on voluntary assisted dying. Apply and work with a fantastic team on cutting edge research.
Applications close on 31 July 2022 for international applicants and 31 August 2022 for domestic applicants. For more information contact Professor Ben White or visit QUT Scholarships.
Voluntary assisted dying: peak bodies must provide practical guidance, Eliana Close et al, Internal Medicine Journal, 2022.
This article argues that now that VAD laws have been passed in all Australian states, there is opportunity for the Australian Medical Association to revisit its 2016 position statement.
This edition provides updates on:
On 19 May 2022 the Voluntary Assisted Dying Act 2022 (NSW) was passed by the New South Wales Parliament. Voluntary assisted dying (VAD) is expected to commence operation in late 2023 following an 18 month implementation period.
The NSW Bill is similar to other States’ that have VAD laws. To be eligible to access VAD a person must:
A person will not be eligible for VAD merely because the person has a disability, dementia, or a mental health condition.
VAD laws have now been passed in all Australian States. VAD is operating in Victoria and Western Australia, and will commence in Tasmania, South Australia and Queensland between late 2022 and early 2023. Commonwealth laws currently prevent the Northern Territory and the Australian Capital Territory from legislating on VAD.
We are in the process of updating our webpage to provide an overview of VAD law in NSW. This information will be available from mid-late June 2022.
A guest blog post by Kate Reed, Palliative Care Nurse Practitioner, Specialist Palliative and Supportive Care, Canberra Health Services
(First published on the End of Life Directions for Aged Care Blog, 26 May 2022 – reproduced with permission).
National Palliative Care Week (NPCW) from 22 – 28 May is Australia’s largest annual awareness-raising initiative to increase understanding of the many benefits of palliative care. This year’s theme, ‘It’s your right,’ aims to raise awareness about the rights of all Australians to access high-quality palliative care when and where they need it.
Palliative medications are a key component of good palliative care and can help to provide pain relief and control of palliative symptoms for people near or at end of life. Despite this, we know that some of these medications, such as morphine and sedatives, are being intentionally underused by nurses and health professionals in Australia, as the medications can sometimes be seen as having the unintentional effect of hastening a person’s death.
We do hear about these awful cases where pain relief is withheld or reduced at end of life because of fear that the nurse or health professional providing the medication might be hastening the death of a person. But these fears of legal or ethical risks are unfounded, as health professionals can be reassured that they are protected in all states and territories in Australia by the doctrine of double effect.
The doctrine of double effect means that if a person is providing pain and symptom management through the medications that they are prescribing or administering, and that they are doing that with the intention to relieve suffering and a patient dies, that they are protected in law. As part of the doctrine of double effect, this only applies when the person is close to death and when the goal is to relieve pain and suffering.
The doctrine of double effect does not just protect doctors, it protects everyone within the health professional team, whether they be the prescriber such as the general practitioner, or the specialist or the nurse practitioner, or they’re the person administering the medications.
If appropriate pain relief is not provided to a person, we are causing them harm, and we are also likely to be causing their family and carers harm in the bereavement phase. Withholding palliative medicines from a patient who needs them goes against the right that every person has to palliative care, and to die as comfortably and pain-free as possible.
I find that nurses and families get concerned, particularly when providing palliative care in the community, that they will be giving a medication and the person will die very soon afterwards, and they will say, “I think the last dose of morphine I gave killed them.” My answer to this is, “No, that's not what killed them. What killed them was their disease. What you did was allow them to be comfortable in end of life, because they were dying and that you were able to relieve their pain.”
Nurses and health professionals mustn’t be afraid to provide palliative medication for pain and symptom relief in patients at the end of life – providing that pain and symptom relief is not only a duty of care for us as health professionals, but it is an honour for us as well, to be able to ensure that a person can die without suffering and that their carers can go on, knowing that everything possible was done possible to address their loved ones’ distress.
Providing palliative medication to a person at the end of life when and where they need it to relieve their pain and symptoms is not only an example of good palliative care, but also a right for every individual, which is why it is supported by the law.
To hear more from Kate Reed and find out more about the doctrine of double effect, visit the Legal Protection for Administering Pain and Symptom Relief section of the ELDAC End of Life Law Toolkit. You can also learn more in Module 6 (Legal protection for providing pain and symptom relief) of End of Life Law for Clinicians, a free online training program for health professionals about end of life law.
Podcast: The line between Voluntary Assisted Dying and Criminal Conviction, Katrine del Villar and Barry Nilsson Lawyers, May 2022.
This podcast explores the intersection of criminal law and Australian laws on voluntary assisted dying in the context of a 2018 criminal prosecution involving the assisted death of a terminally ill New South Wales woman.
What you need to navigate voluntary assisted dying, Cate Swannell, Insight, 2022
This article explores doctors' participation in VAD and how medical practitioners can access training in VAD.
The Equivalence Thesis and the Last Ventilator, Andrew McGee and Drew Carter, Journal of Applied Philosophy, 2022.
The potential shortage of ventilators during the COVID-19 crisis has resulted in guidelines being published denying any moral difference between withholding and withdrawing medical treatment. This reflects some ethicists' support for ‘the equivalence thesis’, the idea that wherever it is permissible to withhold treatment, it is permissible to withdraw it, and vice versa. Some ethicists claim that doctors' opposition to the equivalence thesis discourages treatment withdrawal, leading to unnecessary loss of life amid pronounced scarcity. But first we need to ascertain whether the equivalence thesis is true. If it is, then we can work out what to do about the negative impacts of doctors opposing it. In this article, the authors argue that the equivalence thesis is false. There is a difference between withholding and withdrawing in that there can be instances in which an act of one type would be permissible while an act of the other type would be wrong, even though all other things are equal.
This edition provides updates on:
The Australian Centre for Health Law Research hosted their 9th Annual Public Oration in March. The oration, New Voluntary Assisted Dying Legislation, was delivered by Andrew Denton and Justice Peter Applegarth (Judge of the Supreme Court of Queensland and chairperson of the Queensland Law Reform Commission).
Over recent years, voluntary assisted dying (VAD) laws have been enacted in five Australian States. Queensland is the most recent state to enact legislation, following an extensive review by the Queensland Law Reform Commission. Why are laws now being passed across Australia despite decades of failed attempts to change the law? In Queensland, what was the process undertaken by the Commission, and what was the basis for its recommendation to permit VAD in some cases?
This oration considers these and other questions through the lens of Andrew Denton who has been involved in reform across Australia, and of Justice Peter Applegarth who chaired this review in Queensland. Watch the oration here.
Social workers provide vital emotional and practical support for individuals at the end of life, and their families. This new Social Work Focus article discusses the significant legal role of social workers at the end of life, and how knowing the law can support their delivery of quality palliative and end of life care.
A critical role social workers have is managing and resolving conflict about medical treatment decisions. In this video, featured in Module 10 (Managing conflict) of the End of Life Law for Clinicians training program , social worker Pippa Blackburn explains how she successfully managed a dispute between the decision-maker for a person with a life-limiting illness, and the clinical team.
A new Code of Conduct for 12 health professions will take effect on 29 June 2022. It applies to allied and other health professions including paramedicine, Aboriginal and Torres Strait Islander Health Practice, occupational therapy, pharmacy, dentists, and physiotherapy. The code outlines professional standards of conduct for health professionals practising in these professions, including when delivering end of life care.
Voluntary Assisted Dying by Practitioner Administration Is Not Suicide: A Way Past the Commonwealth Criminal Code? Katrine del Villar et al, Journal of Law and Medicine, 2022.
Five Australian States – Victoria, Western Australia, Tasmania, South Australia and Queensland – have now legalised voluntary assisted dying (VAD). These State legislative schemes intersect with provisions in the Criminal Code Act 1995 (Cth) (Commonwealth Criminal Code) which prohibit using electronic communication to counsel, promote, or provide instruction on “suicide”. These provisions may prevent some conversations and assessments relating to self-administration of VAD occurring via telehealth, thereby restricting access for prospective VAD patients in regional and remote areas.
However, as practitioner administration of VAD is not “suicide”, the Commonwealth Criminal Code does not apply. The Commonwealth law creates the absurd result that the same conversation conducted via telehealth is illegal when contemplating VAD by self-administration, but legal when discussing practitioner-administered VAD. To avoid this, the authors advocate amending the Code to remove the inconsistency with state VAD laws. They also recommend State legislatures consider permitting greater access to VAD by practitioner-administered VAD.
Learn Me Right in Voluntary Assisted Dying podcast, Ruthie Jeanneret, Sinead Prince and Dr Jodhi Rutherford, 2022
In this new podcast from Learn Me Right in Health Law and Bioethics at the Australian Centre for Health Law Research, Dr Jodhi Rutherford discusses her research on Victorian doctors’ perspectives and experiences of voluntary assisted dying (VAD). She discusses the complex ethical issues faced by doctors who choose to participate in VAD; and the difficulties encountered by individuals trying to access VAD.
This edition provides updates on:
Advance Care Planning (ACP) enables a person to make their future health care and medical treatment preferences known to families and health professionals. It can help you to receive the end of life care you want (and refuse treatment that you do not want) when you can no longer decide for yourself.
To celebrate National Advance Care Planning Week (21 - 27 March 2022) we have launched a new End of Life Law for Clinicians video featuring Advance Care Planning Australia’s Helena Rodi discussing how ACP can support health professionals in their end of life clinical practice.
If you are an individual undertaking ACP, or a family member or health professional helping someone to plan, understanding the legal aspects of ACP and your rights and responsibilities is essential. These free resources (produced by ACHLR End of Life Law researchers and colleagues) can help you to know what the law says:
An Australian Research Council Linkage Project study has found that community members (including terminally-ill patients and their families) have significant knowledge gaps about end of life law, and that the role of law at the end of life is largely invisible.
The study, undertaken by academics at QUT, UQ and the Cancer Councils of Queensland, New South Wales and Victoria, explored whether community members understood and could action their legal rights and responsibilities when making end of life decisions.
These key findings highlight the need for community members to have clear, accessible information on end-of-life law, and community education to promote awareness of the law. Better support for patients and families to action their legal rights and responsibilities is also needed, particularly when undertaking advance care planning and substitute decision-making.
On National Close the Gap Day, QUT’s Palliative Care Curriculum for Undergraduates (Pcc4U) launched an updated Toolkit for health professionals on caring for Australian Indigenous peoples at the end of life.
Developed in collaboration with Indigenous health professionals and organisations across Australia, this resource can support health professionals to delivery quality, culturally-responsive care for Aboriginal and/or Torres Strait Islander people with life-limiting illness, and their families and communities.
End-of-Life Essentials (EOLE) is inviting doctors, nurses and allied health professionals currently working with patients, and who are NEW learners to the EOLE Patient-Centred Communication and Shared Decision-Making module, to complete this module and participate in their evaluation study. To participate visit EOLE.
This edition provides updates on:
The New South Wales Legislative Council Standing Committee on Law and Justice has released its report into the Voluntary Assisted Dying Bill 2021 (NSW). The report recommends the Legislative Council proceed to debate the Bill.
The Bill was passed by a majority of the NSW Legislative Assembly (52 votes to 32) in late November 2021. It was referred to the Committee for inquiry.
The first sitting date for the Council is 22 March 2022. If passed (in its current form) the Bill would enable a person who meets the eligibility criteria (which includes being 18 years old or over, with an advanced, progressive disease, illness or medical condition that is causing intolerable suffering and will result in death within 6 months (12 months for a neurodegenerative disease)) to access VAD.
End of Life Law for Clinicians (ELLC) has released a new free online training module about voluntary assisted dying and the law. Designed for all health professionals, it explores:
CPD points may be claimed, and certificates of completion are available.
The ELDAC End of Life Law Toolkit has also released a new VAD factsheet for the aged care sector.
This website's Assisted Dying webpage has been updated to provide detailed information about the law in each State that has introduced VAD, and a new factsheet for the community.
(this article originally appeared on the QUT Law Research Blog, 7 February 2022)
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, a new book edited by Ben White and Lindy Willmott, 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.
Chapter 12 analyses the ten reform case studies to identify lessons for international efforts to change the law and is currently available for download.
National Advance Care Planning Week will be held from 21 - 27 March 2022, and registrations to host an event are open. Help spread the word of advance care planning and encourage others take control of their future medical treatment.
To find out more, and for free resources visit Advance Care Planning Australia.
Who is eligible for Voluntary assisted dying? Nine medical conditions assessed against five legal frameworks. Ben White et al, UNSW Law Journal, 2022.
Eligibility criteria in voluntary assisted dying legislation determine access to assistance to die. This article analyses whether each of the following nine medical conditions can provide an individual with access to voluntary assisted dying: cancer, motor neurone disease, chronic obstructive pulmonary disease, chronic kidney disease, Alzheimer’s disease, anorexia, frailty, spinal cord injury and Huntington’s disease. This analysis occurs across five legal frameworks: Victoria, Western Australia, a model Bill in Australia, Oregon and Canada.
Knowledge of end-of-life law: A cross-sectional survey of general practitioners working in aged care. Marcus Sellars et al, Australasian Journal on Ageing, 2022.
This study sought to describe the knowledge of end-of-life law and experiences in practice at the end of life amongst Australian GPs through a cross-sectional online survey of GPs practising in aged care settings in Queensland, New South Wales and Victoria.
160 GPs (response rate 30.7%) were in the final sample. Most participants (62%) reported experience with six key end-of-life areas at least ‘a few times’, including 74% administering medication for pain and symptom relief, and 67% facilitating advance care planning ‘several’ or ‘many times’ and perceiving they had ‘some’ knowledge of end-of-life law (53%, n = 84). However, low-to-moderate actual levels of end-of-life legal knowledge were identified (mean correct response of 5.24 out of 9). The study concluded that Australian GPs working in aged care may have low-to-moderate knowledge about end-of-life law despite frequently making end-of-life decisions in clinical practice.
Understanding end of life law. Patsy Yates, The Hive, Australian College of Nursing, Summer 2021 (pg. 36)
‘Nurses providing end of life care can face significant ethical challenges as they balance a range of sometimes competing perspectives on the how to support individual patients’.
In this article, QUT’s Distinguished Professor Patsy Yates, AM, discusses why it is vital for nurses at the frontline of end of life care to understand the legal issues in this area, and the impact on practice.
Can depressed patients make a decision to request voluntary assisted dying? Alex Holmes et al, Internal Medicine Journal, 2021.
Depressive symptoms, including those as part of a major depressive disorder, are common at the end of life. A number of psychiatrists consider that a diagnosis of major depression precludes the capacity to make a decision to request voluntary assisted dying (VAD), although this is not a unanimous view. This paper uses a case of a patient in which two different psychiatric opinions were formed regarding her capacity to make the decision to request VAD. The difference of view can be related to whether major depression was diagnosed and the association made between depression and the capacity to request VAD. The view that an absence of major depression is required in order to establish the capacity to request VAD is potentially at odds with the legal definition and not necessarily in keeping with the patient’s experience at the end of life.
This edition provides updates on:
In late November New South Wales’ Lower House of parliament passed the Voluntary Assisted Dying Bill 2021 by 52 votes to 32. It will be debated by New South Wales’ Upper House in early 2022, following an inquiry and report on the Bill by the New South Wales Legislative Council Standing Committee on Law and Justice.
The Bill reflects VAD legislation passed in other Australian States. A person would be eligible for VAD if they:
On 7 November 2021 New Zealand’s voluntary assisted dying laws commenced operation. VAD may be accessed by people aged 18 or over who have a terminal illness that is likely to end their life within 6 months, and is causing unbearable suffering. They must also meet other eligibility criteria. For more information visit the New Zealand Ministry of Health, or read this new article about New Zealand's laws and implementation.
Tasmania’s Parliament has passed legislation introducing Statutory Advance Care Directives in the State. The new laws will commence on a date to be proclaimed.
The new legislation confirms that common law Advance Care Directives will continue to be recognised in Tasmania.
For further information visit our Advance Care Directives Tasmania webpage, or the Tasmanian Department of Health.
Nurses have a significant role in caring for and supporting patients nearing the end of life. End of life nursing practice also requires knowledge and understanding of the law on medical treatment decision-making and other legal issues that commonly arise when a person is dying.
In this new End of Life Law for Clinicians video, Kate Reed, Nurse Practitioner, explains how knowing the law can support nurses in their practice, and improve quality of care.
To learn more register for the ELLC online training modules and complete Module 1 (Nurses and the role of law at end of life). CPD points may be claimed. Certificates of completion are available.
You can also read more about the legal role of nurses in end of life care at the Australian Nursing and Midwifery Journal.
Vivian is hospitalised after a fall at her residential aged care home. She is unconscious and does not have capacity to make decisions about medical treatment.
The medical team discusses treatment options with Vivian’s family, including surgery for her severe head injury. As Vivian does not have an Advance Care Directive, someone else needs to decide whether to consent to the surgery. Some of Vivian’s family want surgery, but others disagree.
Who is Vivian’s legally recognised decision-maker? What happens if Vivian’s family members disagree? Does the clinical team have to follow the decision?
Find out about Vivian’s story and how end of life decisions are made when a person cannot decide for themselves in ELDAC's End of Life Law Toolkit. You can also learn more on this topic in our free online module (Module 5 – Substitute decision-making) at End of Life Law for Clinicians.
Eligibility criteria determine a crucial question for all voluntary assisted dying frameworks: who can access assistance to die? This article undertakes a critical and comparative analysis of these criteria across five legal frameworks: existing laws in Victoria, Western Australia, Oregon and Canada, along with a model Bill for reform. Key aspects of these criteria analysed are capacity requirements; the nature of the medical condition that will qualify; and any required suffering. There are many similarities between the five models but there are also important differences which can have a significant impact on who can access voluntary assisted dying and when. Further, seemingly straightforward criteria can become complex in practice. The article concludes with the implications of this analysis for designing voluntary assisted dying regulation.
In the 2 years since the Victorian VAD laws commenced operation, widespread concerns have been raised about Commonwealth legislation that prohibits discussing suicide via a carriage service (electronic means of communication including telephone and internet).These offences — enacted when voluntary assisted dying was illegal — may criminalise activities otherwise lawful under state legislation.
This article describes the problems caused by this Commonwealth law and its implications for clinicians and patients. It adds to calls for the Commonwealth Government to remove this “apparently unintended grey cloud” over clinicians providing voluntary assisted dying.
Who gets to decide when I can’t? End of life decision-making and deceased donation. Dominique Martin and Shih-Ning Then, Journal of Medical Ethics Blog, 2021
In this blog, the authors discuss some of the legal and ethical challenges in determining who is the lawful decision-maker for decisions about donating organs and tissues after a person’s death. This blog relates to the journal article Transitions in decision-making authority at the end of life: a problem of law, ethics and practice in deceased donation.
This month we provide updates on:
A Bill to legalise voluntary assisted dying in New South Wales has been referred to the Legislative Council Standing Committee on Law and Justice for inquiry and report.
The Voluntary Assisted Dying Bill 2021 (NSW) was introduced by independent MP Alex Greenwich in the NSW Legislative Assembly on 14 October 2021. Following the Bill’s second reading it was referred to the Committee, which will report by the first sitting date of 2022 (date to be confirmed).
Submissions to the Committee close on 22 November 2021. Public hearings will also be held. Further information about the Inquiry, and an issues paper is available from the Parliament of New South Wales.
In this new End of Life Law for Clinicians video, Dr Peter Saul, Intensive Care Specialist, shares a clinical case involving decision-making for a person who needed life-sustaining medical treatment to survive. He discusses the law about withholding (not starting) life-saving treatment at the end of life.
To learn more on this topic register for the ELLC online training modules and complete Module 3 (Withholding and withdrawing life-sustaining medical treatment). CPD points may be claimed. Certificates of completion are available.
Samir has Chronic Obstructive Pulmonary Disease and resides in residential aged care. He has an Advance Care Directive that refuses life-saving treatment.
Samir experiences breathing difficulties and is transferred to hospital, where he is diagnosed with pneumonia and treated. When Samir's daughter is informed, she is upset as her father did not want to go to hospital or receive treatment. She advises the care facility that she will be making a formal complaint.
How can aged care staff manage this situation? What can they do to prevent a similar incident in the future?
Find out about Samir’s story and how end of life conflict with individuals and families can be managed in ELDAC's End of Life Law Toolkit. You can also learn more on this topic in our free online module (Module 10 – Managing conflict) at End of Life Law for Clinicians.
The Gwandalan National Palliative Care Project has released new free online modules for health professionals who provide palliative and end of life care to Aboriginal and Torres Strait Islander peoples. These include modules on:
This training is accredited by the Australian Association of Practice Management for 5 Continuing Professional Development (CPD) points per module, and the Royal Australian College of General Practitioners for 2 points per module. Visit Gwandalan to register for the training.
For more information read Gwandalan’s latest newsletter, the Yaama Maal.
This study examined whether assisted dying practices occurred in Victoria in the 12 months prior to the commencement of the Voluntary Assisted Dying Act 2017 (Vic) ('VAD Act'), and the features of any identified cases. It explored cases of adult patients in Victoria who died between May 2018 and 18 June 2019 as a result of medication administered with the primary intention of hastening death.
Nine cases met the inclusion criteria. Death did not occur immediately after providing medication with the intention of hastening death. In eight cases, it was framed as palliative or terminal sedation and/or continuous deep sedation. Most doctors used language that distanced their practices from assisted dying.
It concluded that unlawful assisted dying practices seem to have occurred in a small number of deaths in Victoria prior to commencement of the VAD Act. These practices typically occurred within the context of palliative or terminal sedation and may be difficult to distinguish from lawful palliative care practice. Some survey responses possibly reflect ambiguity in doctors' intentions when providing medication.
This study examined publicly available policy documents regarding voluntary assisted dying (VAD) in Victoria, and the issues they seek to regulate.
The study identified 60 policies and five themes: 1) conceptions of policy purpose; 2) degree of support for VAD; 3) guidance about process; 4) navigating conscientious objection; and 5) conceptualising VAD and its relationship with other aspects of end-of-life care. Outside of the detailed Victorian Government policies, there was little practical guidance for VAD provision.
The study demonstrates the value of a planned implementation period for jurisdictions contemplating VAD reform and highlights the challenges in policymaking for a practice that is contentious for some.
This month we provide updates on:
On 16 September 2021 the Voluntary Assisted Dying Act 2021 (Qld) was passed by the Queensland Parliament. Voluntary assisted dying (VAD) will commence in Queensland on 1 January 2023, following an implementation period.
VAD laws have now been passed in five of Australia’s six States - Victoria, Western Australia, Tasmania, South Australia, and Queensland. Victoria's and Western Australia's VAD laws have commenced operation. VAD will commence in Tasmania on 23 October 2022, and in South Australia in late 2022 - early 2023. We have updated our webpage to provide an overview of the law in each of these States.
The Queensland Act is similar to other States’ that have VAD laws, with some key differences including:
For more information about VAD in Queensland visit our webpage or Queensland Health.
In this new End of Life Law for Clinicians video, Dr Peter Saul, Intensive Care Specialist, shares a clinical case involving an older person who made medical treatment decisions that others disagreed with. He discusses the law about decision-making capacity and consent to treatment at the end of life.
To learn more on this topic register for the ELLC online training modules and complete Module 2 (Capacity and consent to medical treatment). CPD points may be claimed. Certificates of completion are available.
Maria has advanced pancreatic cancer and is receiving palliative care at her aged care home. One afternoon she experiences chest pain and refuses to go to hospital. The nurse on duty calls an ambulance. The paramedics who attend to Maria determine she is at risk of cardiac arrest. They advise Maria that she needs urgent treatment to save her life, but she refuses. The paramedics decide not to provide life-sustaining treatment to Maria or transfer her to hospital. She consents to receiving pain and symptom relief, and dies the following day.
Was it appropriate for Maria not to be transferred to hospital, and not to receive urgent medical treatment?
Find out about Maria’s story and the law on emergency treatment in ELDAC's End of Life Law Toolkit. You can also learn more on this topic in our free online module (Module 9 - Emergency treatment for adults) at End of Life Law for Clinicians.
The Palliative Care Education Directory (PaCE) is a mobile-responsive web-based app for educators and health and aged care providers. It can help you find learning resources that support the development of palliative care capabilities for a variety of professions and practice contexts. The directory includes information about learning approaches and modes of delivery for each resource.
PaCE is free to use, and all learning resources are free to access. PaCE is an initiative of the Palliative Care Education and Training Collaborative, led by QUT.
The latest edition of this guide is designed to help people understand more about palliative care (sometimes called supportive care). It is written specifically for people affected by advanced cancer.
In this episode Dr Eliana Close, QUT legal academic, Dr Peter Saul, Intensive Care specialist, and Dr Will Cairns, Palliative medicine specialist discuss with Dr Norman Swan decision-making guidelines during emergencies such as pandemics.
Supported decision-making is proposed as an alternative to substitute decision-making, but evidence about supported decision-making practice is limited. This study aimed to build evidence about building the capacity of decision supporters. Eighteen parents of people with intellectual disabilities were trained in decision support using the La Trobe Support for Decision-making Practice Framework. Semi-structured interviews and mentoring sessions were used to capture parental reflections on the value of training. The study found that the training acted as a catalyst for parent self-reflection and the Framework prompted them to adopt a more deliberative approach to supporting decision-making. Some parents perceived increased confidence of their adult offspring in expressing preferences resulting from their own changed approach. This study demonstrates the efficacy of this Framework and evidence-based training in building the capacity of parental decision supporters to be consistent with the rights paradigm.
This article reports on a study exploring the role that law plays in end-of-life decision-making from the perspective of terminally-ill patients, their substitute decision-makers and family members. While participants’ decision-making practices were often underpinned by a legal framework, the role of the law was largely invisible. Community education is needed for the public to know their legal rights and responsibilities, and to understand that the law plays a role in supporting end-of-life decision-making.
This study explored barriers and facilitators to the operationalization of rights in end-of-life decision-making from the perspectives of terminally-ill patients and family members and substitute decision-makers of terminally ill patients in Australia. Semi-structured interviews (face to face and telephone) with patients, family or substitute decision-makers experienced in end-of-life decision-making were completed. Purposive sampling across three Australian states provided 16 terminally-ill patients and 33 family and/or substitute decision-makers.
Barriers and facilitators emerged across three overlapping domains: systemic factors; individual factors, influenced by personal characteristics and decision-making approach; and communication and information. Health care practitioners play a key role in either supporting or excluding patients, family and substitute decision-makers in decision-making.
In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advance care planning is needed to facilitate people operationalizing their legal rights, powers and duties.
This month we provide updates on:
End of Life Law for Clinicians (ELLC) is excited to announce that 10 new and updated online training modules for medical practitioners, nurses, allied and other health professionals, and medical students are now available. Register for the training for free at the ELLC online training portal.
Topics include capacity and consent to medical treatment, withholding and withdrawing treatment, Advance Care Directives, substitute decision-making, legal protection for providing pain relief, futile or non-beneficial treatment, emergency treatment, end-of-life decision-making for children, and managing disputes. Read more about the ELLC curriculum here.
CPD points may be claimed. Certificates of completion are available. Watch this video to learn more.
The Queensland Parliament’s Health and Environment Committee has released a report recommending that the Voluntary Assisted Dying Bill 2021 be passed by the State’s Parliament. The Bill, expected to be introduced in Queensland Parliament in September 2021, would legalise voluntary assisted dying (VAD) in Queensland in limited circumstances.
The Committee also made two recommendations in relation to the 'carriage service' offences in the Commonwealth Criminal Code:
In reaching these recommendations, the Committee considered over 6,000 submissions, and held public hearings into the Bill.
Victor lives alone and has hypertension, diabetes and heart disease. He has a cardiac arrest, and on arrival at hospital remains unconscious. Victor’s treating clinicians believe it is unlikely he will significantly improve, or be able to survive without ventilation. The team discuss with Victor's family withdrawing the ventilation, and providing comfort care.
Can the clinical team withdraw Victor’s ventilation? If Victor’s son insists that Victor continue to be ventilated, does that request have to be followed?
Find out about Victor’s story and the law on futile or non-beneficial treatment in ELDAC's End of Life Law Toolkit. You can also learn more on this topic in our free online module at End of Life Law for Clinicians.
Vacancy: Research Fellow, Voluntary Assisted Dying
The Australian Centre for Health Law Research, QUT is seeking a Research Fellow (Level A/B) for up to six months to undertake a research project on the operation of the Western Australian voluntary assisted dying system. Because of the nature of the role and its focus on qualitative research, applications are welcome from a range of disciplines including law, health and sociology. More details on the position are available at QUT Careers. Applications close 7 September 2021.
The position would be connected to Professor Ben White’s Australian Research Council Future Fellowship project Optimal Regulation of Voluntary Assisted Dying. Any queries should be directed to Ben White at bp.white@qut.edu.au .
A new policy briefing outlining nine key points for voluntary assisted dying (VAD) law, policy and practice in Australia has been released by two legal academics from the Australian Centre for Health Law Research, QUT.
The briefing summarises research about VAD undertaken by Professors Ben White and Lindy Willmott over the past 20 years. The key points for VAD law reform that have emerged from this research are:
1. Australia should have VAD laws: they are ethical and VAD can be safely regulated.
2. VAD laws must be evidence-based and consistent with intended policy goals.
3. There is now a broad “Australian VAD model” but each jurisdiction should pass a law most appropriate for its circumstances.
4. Designing VAD laws requires seeing how the entire legal framework operates.
5. “Piling on” ad hoc safeguards to already sound VAD laws does not make laws safer and can make them worse.
6. VAD systems must be workable so eligible patients can access VAD.
7. The Commonwealth Criminal Code must be changed: it is an unjust barrier for patients seeking VAD and their doctors
8. Institutions should not have power to prevent their patients or permanent residents from accessing VAD.
9. Effective implementation of VAD is challenging but very important.
“VAD debates should be evidence-based but this can be challenging when that evidence is in research that is often complex or written mainly for specialist audiences” Professor Willmott said.
“Our role as academics is to support evidence-based debate and this includes sharing research findings with community and political audiences.”
Learn more about Australian law on Voluntary assisted dying at End of Life Law in Australia.
This month we provide updates on:
In the latest episode of Coffee with a Colleague, Associate Professor Shih-Ning Then, Australian Centre for Health Law Research, QUT speaks to Associate Professor Dominique Martin , School of Medicine, Deakin University about end of life and organ donation decisions.
This discussion builds on a recent article they published in the Journal of Medical Ethics. The article examines substitute decision-making at the end of life in the context of ongoing treatment decisions by substitute decision-makers; and decisions about organ or tissue donation after death, by donation decision-makers.
Laws and ethical considerations relevant to determining who is the lawful substitute decision-maker and donation decision-maker are explored, as well as ethical and practical problems that emerge where these decision-makers are different people.
The Gwandalan National Palliative Care Project aims to improve the quality of palliative care for Aboriginal and Torres Strait Islander communities. New free education for health professionals who provide palliative and end of life care to Aboriginal and Torres Strait Islander people is now available. Topics include:
The goal of the training is to ensure that care is culturally safe and responsive. Visit Gwandalan to register for the training.
Advance Care Planning Australia has completed its landmark prevalence research project. The project aimed to provide insights into the prevalence of advance care planning (ACP) and other end of life planning documents in Australia. 12 research papers reporting on findings have been published as part of the project. Key findings included:
Source: Advance Care Planning Australia.
Advance Care Planning International is running its first ever international digital exchange. The digital exchange, to be held over two and a half days, will focus on global efforts to promote advance care planning by activating communities and having conversations before crises arise. For more information or to register visit the ACP-I.
This month we provide updates on:
A Bill to legalise voluntary assisted dying (VAD) was passed by South Australia’s parliament on 24 June.
Under the legislation, VAD will be available a person aged 18 years or over who has an incurable, advanced, and progressive disease, illness or medical condition, which is causing intolerable suffering, and is expected to cause death within 6 months (or 12 months for a person with a neurodegenerative condition). The person must also meet other strict criteria outlined in the legislation.
The Bill is awaiting assent by the South Australian Governor. VAD is expected to commence in South Australia in late 2022.
In Western Australia, VAD commenced on 1 July 2021. For more information visit Western Australia Health or End of Life Law in Australia.
Renata has incurable cancer. Her oncologist suggests palliative chemotherapy to help manage her symptoms and possibly prolong her life.
Renata’s son wants his mother to have treatment. She agrees, but later decides not to proceed with chemotherapy, preferring instead to spend quality time with her family. Her son becomes upset and demands that the oncologist make his mother have chemotherapy.
Is it lawful for Renata to refuse chemotherapy? Does her oncologist have to follow her decision?
Find out about Renata’s story and the law on withholding and withdrawing life-sustaining medical treatment in ELDAC's End of Life Law Toolkit. You can also learn more in our free online module at End of Life Law for Clinicians.
LGBTIQ+ Health Australia and the Australian College of Applied Psychology (ACAP) are inviting LGBTIQ+ people and/or health professionals to share their views on palliative care in the following survey.
Palliative care includes experiencing a life-limiting illness, facing end of life and bereavement. It is particularly important that palliative care is inclusive and appropriate for all LGBTIQ+ people.
You do not have to be accessing palliative care services to participate in this survey. All views are welcome.
You can complete this survey if you are:
For further information contact LGBTIQ+ Health Australia.
This study explored whether assisted dying practices occurred in Victoria in the 12 months prior to the commencement of the Voluntary Assisted Dying Act 2017 (Vic) (‘VAD Act’). It examined cases of adult patients in Victoria who died between May 2018 and 18 June 2019 as a result of medication administered with the primary intention of hastening death. Cases were identified from a survey about medical end of life decisions for adult patients, completed by Victorian specialists treating adults at the end of life.
Nine cases met the inclusion criteria. Death did not occur immediately after providing medication with the intention of hastening death. In eight cases, it was framed as palliative or terminal sedation and/or continuous deep sedation. Most doctors used language that distanced their practices from assisted dying.
This paper concludes that unlawful assisted dying practices seem to have occurred in a small number of deaths in Victoria prior to commencement of the VAD Act. These practices typically occurred within the context of palliative or terminal sedation and may be difficult to distinguish from lawful palliative care practice.
This month we provide updates on:
A Bill to legalise voluntary assisted dying (VAD) in Queensland was introduced in Queensland’s Parliament last week.
The Voluntary Assisted Dying Bill 2021 (Qld) was developed by the Queensland Law Reform Commission (QLRC), which was tasked with considering a VAD framework for Queensland. The Bill has similar provisions to VAD laws in Western Australia, Tasmania and Victoria but also some key differences:
This QLRC diagram outlines the process proposed in the Bill for accessing VAD in Queensland.
Debate on the Bill is expected to resume in September 2021 after it is reviewed by a Queensland Parliamentary Committee. Submissions on the Bill are invited by the Committee by Friday 2 July 2021.
In South Australia, debate on a bill to legalise voluntary assisted dying continues, with House of Assembly members last week voting 33 to 5 in favour of the legislation.
The COVID‐19 pandemic has highlighted the importance of transparent triage. In this Medical Journal of Australia (MJA) Podcast, Dr Eliana Close, Postdoctoral Research Fellow at QUT’s Australian Centre for Health Law Research discusses the legal and ethical importance of having clear triage protocols during pandemics to assist clinicians making resource allocation decisions.
This podcast follows the release of a new MJA article by Dr Close and colleagues, Transparent triage policies during the Covid-19 pandemic: a critical part of medico-legal risk management for clinicians. It provides an overview of current COVID‐19 triage policies in Australia, and assesses their legal status. The authors argue that transparent policies are needed so their compliance with law can be tested, and to enable practitioners to better understand their obligations before making sometimes “impossible” decisions.
Peter has end stage lung cancer. His condition is deteriorating, and he is experiencing severe pain and breathing difficulties. Peter’s GP prescribes subcutaneous morphine and/or midazolam prn to relieve Peter’s pain and reduce his shortness of breath. Tilda, a Registered Nurse, administers these medications and Peter dies a short time later. Was Tilda’s provision of pain and symptom relief to Peter lawful?
Find out about Peter’s story and the law on providing pain and symptom relief in ELDAC's End of Life Law Toolkit. You can also learn more in our free online module at End of Life Law for Clinicians.
Legislative Options to Address Institutional Objections to Voluntary Assisted Dying in Australia. Ben White et al, UNSW Law Journal.
Voluntary assisted dying is being considered by parliaments and law reform bodies across Australia. Although individual conscientious objection is routinely considered in these deliberations, an institution’s desire to object to providing voluntary assisted dying has received very little attention. After briefly considering the concept of institutional objection in voluntary assisted dying, this article examines the available (albeit limited) Australian evidence on this practice. The article proposes that regulation is needed and presents three models for parliaments and law reformers to consider.
Collecting data on end-of-life decision-making: Questionnaire translation, adaptation and validity assessment. Lindy Willmott et al, Progress in Palliative Care.
Little is known in Australia about current practice relating to medical end-of-life decisions preceding patient deaths. This study aimed to translate and culturally adapt a European questionnaire on medical end-of-life decisions and end-of-life care to the Australian context, producing a questionnaire to assess current medical practice in Australia and enable comparison with international studies.
This month we provide updates on:
End of Life Law for Clinicians and Advance Care Planning Australia are delighted to launch How to do Advance care planning: A quick guide for health professionals.
Developed in collaboration with The Advance Project and Palliative Care Australia, this new resource is designed to help health professionals access useful advance care planning resources, and support planning to be a routine part of clinical practice.
The End-of-Life Choices (Voluntary Assisted Dying) Act 2021 received Royal Assent from the Governor of Tasmania on 22 April 2021. VAD will commence in Tasmania either on a date to be proclaimed or 18 months from the date of Royal Assent (approx. 22 October 2022).
Debate of South Australia's bill to legalise voluntary assisted dying continues in both South Australian Houses of Parliament.
Maria lives in residential aged care and does not have an Advance Care Directive. One afternoon she experiences chest pain, and a nurse on duty calls an ambulance. When the paramedics arrive Maria says she doesn’t want to go to hospital. Ultimately, the paramedics provide Maria with pain relief, but don’t transport her to hospital. Maria dies the next day, with her family by her side.
Was it appropriate for Maria not to be transferred to hospital, and not to receive urgent medical treatment?
Find out about Maria’s story and the law on emergency medical treatment in ELDAC's End of Life Law Toolkit. You can also learn more in our free online module about emergency treatment at End of Life Law for Clinicians.
This month we provide updates on:
National Advance Care Planning Week (22 - 26 March 2021) encourages all Australians to talk to others about what matters most, and to make their health care and medical treatment preferences known. It is a time to think about what you would want, or who you would want to speak for you if you were unwell and could no longer make decisions yourself. It is also an opportunity to learn about the law and your rights relating to Advance Care Directives and end of life medical treatment by:
Advance Care Planning Australia (ACPA) has released new videos about two couples exploring their partner’s understanding of Advance Care Planning, and a companion guide to Advance Care Planning.
For more information visit National Advance Care Planning Week.
Alistair has Coronary Heart Disease and Parkinson’s disease. He contracts pneumonia and his health is deteriorating. Alistair’s GP, Elizabeth, attends to Alistair and learns he has an Advance Care Directive refusing life-sustaining treatment and antibiotics. She follows Alistair’s Directive and does not call an ambulance or administer antibiotics. Was Elizabeth’s decision not to treat Alistair lawful?
Read Alistair’s story, and learn more about the law on Advance Care Directives in ELDAC’s Legal Toolkit factsheet.
The Australian Digital Health Agency has released new National Guidelines for health services and health professionals about using My Health Record to store and access Advance Care Planning and other documents.
Advance Care Planning Australia has led new end of life research on substitute decision-making and Advance Care Planning:
The Office of the Public Advocate Victoria has released Decision Time: Activating the rights of adults with cognitive disability, a new report on current issues for people with cognitive disabilities. The report covers topics including use of restrictive practices, elder abuse, guardianship, supported and substitute decision-making, and Advance Care Planning. It provides policy recommendations for all State and Territory governments and the Australian Government, to improve laws and practices that impact on people with cognitive disability.
Palliative Care Australia will hold their 16th Oceanic Palliative Care Conference online from 7 – 10 September 2021. The Conference, held biennially, is the pre-eminent event for all those passionate about palliative and end-of-life care.
The Conference presents a unique opportunity to convene leaders, health professionals, and experts in an accessible virtual format – to advance discussion and knowledge about palliative care in Australia and surrounding Oceanic Regions.
The conference's overall theme is ‘Invest Challenge Change’, building on a global push to ensure that we build better, more resilient health systems better able to meet critical healthcare needs in normal circumstances, and sufficiently resourced to meet needs during emergency and crisis times.
Online early bird registrations and call for abstracts for the 2021 Oceanic Palliative Care Conference (21OPCC) are now open.
For more information about how to submit an abstract or to register visit www.oceanicpallcare.com.
This month we provide updates on:
Voluntary assisted dying law reform is occurring across Australia, with legislation to legalise assisted dying being contemplated in three Australian States.
Tasmania
The University of Tasmania has released a new report following an independent review of the End of Life Choices (Voluntary Assisted Dying) Bill 2020 (Tas). The report identifies further amendments for the Bill, including introducing an obligation for non-participating health practitioners to refer patients to practitioners who will provide VAD, and clarifying the obligations of non-participating health and aged care organisations to patients or residents seeking access to VAD.
The Bill, which was passed by Tasmania’s Legislative Council in November 2020, is due to return to parliament for final debate in March 2021.
South Australia
South Australia’s Voluntary Assisted Dying Bill 2020 (SA) was introduced in both the upper and lower houses of parliament in December 2020. Similar to Victoria, the proposed criteria for accessing VAD requires the person to be over 18; have capacity; and be diagnosed with an incurable, advanced and progressive disease, illness or medical condition that causes intolerable suffering and will cause death within 6 months (or 12 months for neurodegenerative conditions). The Bill will be debated in coming months.
Queensland
On 24 February 2021 the Queensland Law Reform Commission’s update on its review A legal framework for Voluntary Assisted Dying was tabled in the Queensland Parliament.
The Commission will provide a final report on VAD, and draft legislation in May 2021. The Queensland Government is expected to introduce a VAD Bill to parliament in late May.
Victoria became the first Australian jurisdiction to legalise VAD in more than 20 years in June 2019. VAD will commence in Western Australia on 1 July 2021.
QUT’s Australian Centre for Health Law Research is offering a new PhD Scholarship on regulation of voluntary assisted dying. The PhD is part of an Australian Research Council Future Fellowship project which explores the regulation of voluntary assisted dying as a new and important aspect of end of life decision-making in Australia.
Applications close on 1 March 2021. For more information, contact Professor Ben White or visit QUT Scholarships.
Nina has recently been diagnosed with dementia. She is usually cooperative but now refuses to take her medication and her health is deteriorating. Nina’s GP wants to admit her to hospital for treatment, but does Nina have decision-making capacity and can she consent?
Find out about Nina's story, and the law on capacity and consent to medical treatment in ELDAC's Legal Toolkit. You can also learn more in our free online module about capacity and consent at End of Life Law for Clinicians.
QUT’s Australian Centre for Health Law Research is offering a new PhD Scholarship on regulation of voluntary assisted dying. The PhD is part of an Australian Research Council Future Fellowship project which explores the regulation of voluntary assisted dying as a new and important aspect of end of life decision-making in Australia.
The project is an interdisciplinary one. Although based in QUT's Faculty of Law, applications will be considered from other disciplines including regulation, social science, bioethics and health/public policy.
Applications close on 1 March 2021. For more information, contact Professor Ben White or visit QUT Scholarships.
Queensland’s updated guardianship laws commenced on 30 November 2020, introducing a range of reforms to the Guardianship and Administration Act 2000 (Qld) and the Powers of Attorney Act 1998 (Qld). Major reforms that apply to end of life decision-making include:
The following pages of this website have been updated to reflect these reforms:
More information is also available from the Queensland Government.
The End of Life Choices (Voluntary Assisted Dying) Bill 2020 (Tas) proposing the introduction of voluntary assisted dying (VAD) in Tasmania passed the Legislative Council in early November 2020. The Bill will return to the House of Assembly for further debate.
The Bill proposes the following eligibility criteria for a person to access VAD:
A 'relevant medical condition' is a disease, illness, injury or condition that is advanced, incurable and irreversible and expected to cause death within 6 months (12 months for a neurodegenerative disease). ‘Suffering intolerably’ means:
In late October 2020 the results of a New Zealand referendum on legalising euthanasia were announced, with more than 65% of voters supporting the End of Life Choice Act 2019 becoming law. The laws are expected to commence in November 2021, 12 months from the date of the referendum result.
Increasingly, jurisdictions around the world are considering legalising voluntary assisted dying (VAD). Beyond the question of whether to legalise VAD, a critical issue is what form the legislation should take. This impacts who has access to a medically assisted death, what kind of assistance can be provided, and the safeguards and monitoring systems in place.
In this episode of Coffee with a Colleague Dr Eliana Close speaks to Professor Thaddeus Mason Pope about aspects of the VAD legislation in Australia and the United States. They discuss how (often due to political compromises) certain aspects of VAD legislation may compromise various policy goals. However, as VAD is legalised in more states, there are signs that some jurisdictions may be slowly moving away from a cookie-cutter approach to how the legislation is structured.
This week we provide updates on:
The Queensland Law Reform Commission is inviting submissions on its consultation paper A legal framework for voluntary assisted dying. In May 2020 the Commission was tasked by the Queensland Government with developing a voluntary assisted dying (VAD) scheme for Queensland, and preparing draft legislation. The Commission is seeking views on a range of issues including:
Submissions close on 27 November 2020. More information about Australia's law on assisted dying visit our webpage or download our factsheet.
The South Australian Parliament has released its Report of the Joint Committee on End of Life Choices. The report findings recognise the need for improvements in palliative care services, the importance of Advance Care Directives, and the need for greater education among clinicians, carer workers and emergency services about these. In relation to voluntary assisted dying (VAD), the report found South Australia should monitor and review Victoria’s and Western Australia’s VAD regimes and have regard to these if the Parliament decides to introduce VAD legislation in the future.
The Tasmanian Department of Justice released a Draft Guardianship and Administration Amendment (Advance Care Directives) Bill 2020 for public consultation (submissions have now closed). The Draft Bill adopts recommendations from the Tasmanian Law Reform Institute’s 2018 guardianship review, including introducing statutory advance directives (currently Tasmania has common law Advance Care Directives only), and supported-decision-making.
The Queensland Department of Justice and Attorney-General has released new guidelines for capacity assessment in Queensland. The guidelines provide principles, legal tests and checklists to assist health professionals, families and others in assessing whether or not a person has capacity for decision-making about health, personal and financial matters.
The guidelines may be applied in a number of situations including when assessing a person’s capacity to consent to or refuse medical treatment, or make an enduring document, including an Advance Health Directive or Enduring Power of Attorney.
The guidelines will be effective from 30 November 2020 when Queensland’s amended guardianship legislation will also take effect. Information on Queensland's new guardianship laws will be included in our November Recent Developments update.
CareSearch has launched its national Part of Life campaign to increase community awareness of palliative care, and encourage all Australians to learn, care, and plan for death and dying.
“Death and dying will affect all of us. It’s a part of life. And that means everyone has a role to play in palliative care,” CareSearch Director Professor Jennifer Tieman said.
Under the National Palliative Care Strategy, six guiding principles have been identified as fundamental to ensure that all people experience the palliative care they need, including that care is person-centred; accessible; and that everyone has a role.
“What we are hoping to achieve through this campaign is two-fold; we want to further support health professionals through easy access to quality information and we also want to lift community literacy as a way to encourage advance planning,” Professor Tieman said.
For more information about the campaign and free resources visit CareSearch.
To facilitate advance care planning during the Covid-19 pandemic some Australian States and Territories amended their legislation to enable witnessing of Advance Care Directives and other enduring documents through audio-visual means or by electronic signature. Advance Care Planning Australia has released a report exploring the legislative response to audio-visual witnessing. It also discusses the benefits of introducing these laws in other jurisdictions, as well as extending the operation of current laws post-Covid 19.
This week we provide updates on:
We are delighted to announce that the End of Life Law for Clinicians (ELLC) national training program has been extended to June 2023.
ELLC is a free training program funded by the Australian Department of Health that delivers education to clinicians about the law at end of life. The first phase of ELLC delivered 10 online training modules on common end of life legal issues, and clinical case-study workshops across Australia.
The next phase of ELLC will deliver updated modules tailored to nurses and allied health professionals, as well as medical practitioners and students. New content will also be produced for clinicians working with specific populations at the end of life. These will focus on care for older people, people living with disability, Aboriginal and Torres Strait Islander people, people who identify as LGBTIQA+, and people from culturally and linguistically diverse backgrounds. Workshops and webinars will commence in 2021.
Further information about ELLC can be found in the latest Caresearch Blog. You can register for the ELLC training modules or contact endoflifelaw@qut.edu.au to learn more, or join the ELLC mailing list.
The new Good Medical Practice: a Code of Conduct for Doctors in Australia published by the Medical Board of Australia will take effect from 1 October 2020. In a recent media release the Board noted the Code changes include:
The new Code also contains revised sections on professionalism and public comment, access to care and conscientious objection, and culturally safe practice.
MH Law Queensland is a new website created by ADA Law Community Legal Service and Queensland Advocacy Inc. It provides free information and resources about legal issues relating to people living with mental illness. Topics include the Mental Health Act 2016 (Qld) processes, capacity and decision-making, health, Enduring Power of Attorney matters, guardianship and administration, criminal and family law, and abuse of older people. Legal referrals are also provided.
Did you know that there are probably hundreds of sets of real human bones in the cupboards of doctors and other health professionals in Australia - most initially obtained illegally overseas? As well as the ethical issues, there are legal problems - especially regarding their disposal. In the latest instalment in the Australian Centre for Health Law Research’s Coffee with a Colleague series Adjunct Prof Anne-Maree Kelly, Prof Simon Craig and Jonathan Coman explore these issues and suggest some potential resolutions.
This week we provide updates on:
In a new article published in the Internal Medicine Journal, Dr Craig Sinclair et al explore why Advance Care Planning (ACP) is an urgent priority during the coronavirus outbreak, particularly for older people and those with chronic and life-limiting conditions, and should form part of the health system’s response strategy to COVID-19. The authors outline key recommendations for policy and practice in the system-wide implementation of ACP, to enable a more ethical, coordinated and person‐centred response in the COVID‐19 context.
To learn more about Advance Care Planning visit Advance Care Planning Australia. Information about Advance Care Planning and older people in aged care can also be found at End of Life Directions for Aged Care.
On 17 October 2020 New Zealanders will vote in a national referendum on whether the End of Life Choice Act 2019, the legislation which permits assisted dying, should come into force. If passed, the legislation will permit eligible New Zealanders to request assisted dying. The eligibility criteria include that the person:
In a new article published in the New Zealand Medical Journal, Ben White et al explore the importance of reliable evidence in informing law-making on assisted dying.
Research demonstrates that some patients at the end of life receive non-beneficial treatment while in hospital. To help address this issue, Intervention for Appropriate Care and Treatment (InterACT), an NHMRC funded partnership project led by QUT, is undertaking a study to promote appropriate care and treatment decisions and pathways for older patient populations in three major Queensland hospitals. It will assess the impact on patient outcomes and the cost-consequences of implementing a prospective feedback loop intervention with clinical teams.
The Study Protocol, recently published in BMC Geriatrics, outlines how the study will be conducted, with the goal of improving quality of care of older people near the end of life, reducing the incidence of non-beneficial treatment, and improving the efficiency of hospital resources.
For information about the law on futile or non-beneficial treatment visit our webpage.
Death doulas are caregivers who provide a range of support to people who are dying, and their family members. In a new article published in Health and Social Care in the Community, Rawlings et al explore the diverse role performed by deaths doulas, and their interface with health care professionals.
QUT’s Australian Centre for Health Law Research is offering 2 new PhD Scholarships on regulation of voluntary assisted dying. The PhDs are part of an Australian Research Council Future Fellowship project which explores the regulation of voluntary assisted dying as a new and important aspect of end-of-life decision-making in Australia.
The project includes comparative case studies of regulation in Canada and Belgium (where voluntary assisted dying has been lawful for longer periods). It is intended that the PhD candidates would work on these international case studies but there will also be exposure to the wider project.
The project is an interdisciplinary one. Although based in QUT's Faculty of Law, applications will be considered from other disciplines including regulation, social science, bioethics and health/public policy.
For more information, contact Professor Ben White or visit QUT Scholarships.
This week we provide updates on:
Adequate pain and symptom relief is a core value of healthcare, medicine and nursing, which is particularly important at the end of life. Yet, some dying patients do not have their symptoms sufficiently controlled, which can cause severe distress to patients, families and health professionals. Reasons for inadequate symptom management at the end of life are complex and include difficulties in recognising signs of dying, identifying symptoms, and accessing care services. Another barrier to receiving optimal pain and symptom management relates to fears regarding legal or ethical risks. This can arise where health care professionals want to relieve a patient’s symptoms but are concerned about the effects that the necessary medication could have on the patient.
In a recent article published in Palliative Medicine with colleagues from the University of Queensland, the University of Technology Sydney and the University of New England, we spoke to nurses from different clinical backgrounds and settings about their concerns when providing pain and symptom relief to patients near the end of life. [1] We encountered recurrent reports from almost all interviewed nurses that symptom management was seen as a noticeable issue at the end of life, particularly in non-palliative settings like residential aged care. Nurses frequently discussed fears that providing symptom relief might hasten patients’ death and lead to legal or professional repercussions. While some spoke of coroner’s court, civil litigation or criminal charges like murder or manslaughter, nurses also worried that any legal investigation could result in them losing their job, registration or reputation.
What stood out was that for most nurses, legal and professional concerns were not based on their own experiences but rather on stories they had heard from others and in the media. Yet, their fears still influenced clinical practice in important ways. This included under-reporting of symptoms, under-administering of symptom relief and over-documenting when medication was given.
Particularly concerning was that less than half of the interviewed nurses knew the law in this area. This is significant because the law is clear in its protection and support of appropriate management of symptoms at the end of life. The law draws on the ethical doctrine of double effect. [2] If an action is carried out with good intent, for example, the intention to relieve patients’ severe pain, negative side effects like the potential risk to hasten their death are ethically accepted, as long as:
a.It is staff’s explicit intention to relieve pain, not to hasten death;
b.Pain relief is not achieved through causing the patient’s death;
c.Proportionally, the need to relieve pain is so great that it warrants accepting the risk of hastening death.
Other research we have done also confirms that fears of legal risks for providing palliative care are largely unfounded. A recent review of publicly available cases in Australia demonstrated there has been very little judicial scrutiny even of cases where over-medication is alleged to have resulted in a patient's death. [3] We have suggested that clinicians should not fear legal sanctions for using opioids appropriately at the end of life. Indeed we argue that the law can be an ally in good end of life care through its support for administration of appropriate palliative care. [4]
To help care staff learn more about the law when providing pain and symptom relief at the end of life, we have developed the ELDAC Legal Toolkit and a free online training program called End of Life Law for Clinicians. [5,6] These resources include detailed information that assists health professionals and aged care workers to answer legal questions that commonly arise in aged care practice as well as in other care settings. We have also created a short animation to share our findings about nurses’ legal concerns with a wider audience. [7] In using these resources, we hope that healthcare staff will feel more confident of the support that law provides for the provision of appropriate palliative care.
References
QUT’s Australian Centre for Health Law Research (ACHLR) has launched ‘Coffee with a colleague’, a new online seminar series featuring conversations between its researchers, collaborators and colleagues on mutual research interests.
The first seminar, Non-beneficial treatment at the end of life and decision-making in the Covid-19 pandemic, features Dr Eliana Close, Postdoctoral Research Fellow, ACHLR, in conversation with Associate Professor James Downar, Critical Care and Palliative Care physician, Head of the Division of Palliative Care, University of Ottawa, Canada. View their discussion abput this complex issue for free on YouTube.
Further information on Australia's laws relating to futile or non-beneficial treatment is available from End of Life Law in Australia. A free online training module for clinicians is also available from End of Life Law for Clinicians (see Module 8: Futile or non-beneficial treatment).
In a new study published in the Internal Medicine Journal, Dr Jamie Bryant and colleagues explore junior doctors' self-reported confidence in discussing and completion resuscitation plans, and their knowledge of resuscitation policy (including where plans are legally enforceable). Th study found that tough most respondents felt confident discussing and documenting patient’s resuscitation plans, only 45% correctly identified that these plans are legally enforceable medical orders.
Resuscitation planning is also the subject of recent Caresearch blog article, CPR Discussions and decisions: a necessary part of medical treatment planning, by Dr Barbara Hayes, Clinical Lead: Advance Care Planning and Palliative Care Consultant, Northern Health (Melbourne). A short animated film to help the community better understand the role of CPR discussions in hospital (developed by Dr Hayes and colleagues) is also available from Northern Health.
This week we provide updates on:
To reduce physical contact between people during COVID-19 temporary changes have been made to the Powers of Attorney Act 1998 (Qld). These changes include:
These changes will be in force until 31 December 2020. To view the Regulation about these changes visit the Queensland Legislation website.
The Western Australian Joint Select Committee on Palliative Care is holding an inquiry into palliative care. The Committee is inquiring into implementation of the recommendations of the End of Life Choices Inquiry, and other aspects of palliative care.
Submissions are due by Friday 10 July 2020. For further information visit the Inquiry’s website.
The South Australian Government is inviting views about improvements to South Australia’s laws relating to Powers of Attorney. The closing date for feedback in 4 September 2020. For further information visit YourSAy .
ANZICS guiding principles for complex decision-making during the CPVID-19 pandemic: These guidelines, published in Critical Care and Resuscitation, outline key principles for decision-making during the pandemic to support intensive care practice, and the development of local admission policies for health care organisations and local authorities.
Why making voluntary assisted dying legal best respects both sides of this debate: In this blog, QUT Associate Professor Andrew McGee explores the issue of conscientious objection to participation in voluntary assisted dying (VAD) processes by health care practitioners. This blog is based on a new article by Dr McGee in the Journal of Pharmacy Practice and Research.
Physician attitudes to voluntary assisted dying: a scoping review: In this new BMJ Supportive & Palliative Care article QUT’s Jodhi Rutherford and colleagues explore the attitudes of Australian doctors to the legalisation of VAD, including their willingness to participate in it.
Does the Voluntary Assisted Dying Act 2017 (Vic) Reflect Its Stated Policy Goals?: This article by Professor Ben White and colleagues in the University of New South Wales Law Journal critically evaluates the extent to which key aspects of Victoria’s VAD legislation reflect its intended policy goals.
This week we provide updates on:
From 24-30 May 2020 is National Palliative Care week, a national event to raise awareness and understanding about palliative care throughout the community. This year’s theme is ‘Palliative Care … it’s more than you think’. One aspect of palliative care that is less well known is the law on providing medication for pain and symptom relief to a person with a life-limiting illness.
In a recent article published in Palliative Medicine with colleagues from the University of Queensland, the University of Technology Sydney and the University of New England, researchers from QUT spoke to nurses about their concerns when providing pain and symptom relief to patients near the end of life. Less than half of those interviewed knew the law in this area, including the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief. Previous research has also demonstrated knowledge gaps among Australian doctors on the law and end of life care.
Knowing the law in this area is critical for individuals, their families, and health professionals. For example, knowing when it is appropriate and lawful to provide pain relief can alleviate fears among some health professionals that providing medication might hasten their patient's death and lead to legal or professional repercussions. This can help avoid adverse outcomes to a person at the end of life, such as medication being withheld, under treatment, or dying in pain, and ensure individuals receive optimal end of life care.
Education can support individuals, families and health professionals to understand the right to pain relief, and the law on palliative medication. Useful resources include:
The Queensland Premier has announced that draft legislation to introduce voluntary assisted dying (VAD) in Queensland will be referred to the State’s Law Reform Commission for consideration.
In March 2020 the Queensland Parliamentary Health Committee recommended the introduction of VAD legislation in its VAD report arising from the Inquiry into Aged Care, End-of-Life and Palliative Care and Voluntary Assisted Dying. The proposed legislation would enable a person over 18 to access VAD if they have an advanced and progressive terminal, chronic or neurodegenerative medical condition that will cause death, and they meet other criteria. The eligibility criteria and other aspects of the proposed laws are discussed in our Recent Development of 27 March 2020 .
The Commission is due to respond by March 2021. Further information about Australian laws on VAD and euthanasia can be accessed on this website or factsheet.
Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying is a new Australian Research Council Future Fellowship research project led by Professor Ben White, Australian Centre for Health Law Research , QUT.
This research project aims to enhance end-of-life care through optimal regulation. It will explore regulation of voluntary assisted dying (VAD) as a new and important aspect of end-of-life decision-making and propose a new optimal regulatory framework for VAD in Australia.
The project, which will run from 2020-2024, will be supported by collaborators from Dalhousie University Canada, Vrije Universiteit Brussel, Belgium, and the Australian National University.
For further information visit the project’s website or view the project brochure.
The Australian Centre for Health Law Research is offering a PhD scholarship to applicants interested in undertaking health law higher-degree research. The scholarship is available only to those currently resident in Australia. Applicants must be able to commence the PhD program by 1 September 2020.
The proposed PhD program must align with the Centre's areas of research interest. The Centre’s programs of research are End of Life; Health Society and Regulation; Planning for Healthy Ageing; and Technology, Innovation and Health.
Find out more about this opportunity and eligibility criteria at QUT. For further information contact the Centre's Co-Directors Associate Professors Fiona McDonald and Tina Cockburn.
This week we provide updates on:
Advance Care Planning Australia (ACPA) has released a report on The Australian public’s knowledge, attitudes and experiences regarding substitute decision-making for medical decisions.
The report arises from a national cross-sectional study undertaken by ACPA in 2018 of 1,127 members of the general Australian population. Findings included:
ACPA has also published a new factsheet for substitute decision-makers. Information about State and Territory substitute decision-making laws is available at End of Life Law in Australia.
A new film, The Inappropriate Question, has been launched to help the community understand why clinicians discuss cardiopulmonary resuscitation (CPR) and not for resuscitation with patients in hospital, and their families. It also encourages people to consider Advance Care Planning and medical treatment decision-making at the end of life.
The film was created by Dr Barbara Hayes, Clinical Lead, Northern Advance Care Planning Program, Northern Health Victoria, and Professor Joe Ibrahim.
Further information about the film is available at Northern Health. Information about the law on futile or non-beneficial treatment, withholding life-sustaining treatment, and Advance Care Directives can be found at End of Life Law in Australia.
End of life decision-making can be challenging for everyone involved in a person’s care, and sometimes disagreements can arise.
The End of Life Directions for Aged Care (ELDAC) Legal Toolkit provides useful resources for health professionals and aged care workers about managing disputes in aged care, including a:
A range of resources to support palliative care and Advance Care Planning for older Australians are available at ELDAC.
This week we provide updates on:
The Queensland Health, Communities, Disability Service and Domestic Violence Prevention Committee has recommended the introduction of Voluntary Assisted Dying (VAD) legislation in Queensland. In its VAD report arising from the Inquiry into Aged Care, End-of-Life and Palliative Care and Voluntary Assisted Dying, tabled in Parliament today, the Committee made 21 recommendations relating to a VAD scheme in Queensland.
Recommendation 1 was that the Queensland Government use draft legislation submitted to the Inquiry by Professors Lindy Willmott and Ben White as the basis for Queensland’s VAD legislation. The draft Bill is contained in Appendix 1 to the Committee’s report.
Other recommendations include:
A summary of the report is also available. The committee accepted 4,719 written submissions for the Inquiry. 98% of submissions (4,602) of submissions commented on VAD, with the majority supporting the introduction of VAD in Queensland.
In a new animated video, Law-making about voluntary assisted dying must be based on reliable evidence, Professors Ben White and Lindy Willmott from the Australian Centre for Health Law Research, QUT explore the need for evidence-based law making from our parliamentarians on this important topic.
A blog article on law-making about voluntary assisted dying is also available at QUT Law Research.
This week we provide updates on:
The Queensland Health, Communities, Disability Service and Domestic Violence Prevention Committee has released its first report from its Inquiry into Aged Care, End-of-Life and Palliative Care and Voluntary Assisted Dying.
The report makes 77 recommendations in relation to aged care, end of life care and palliative care in Queensland. Voluntary assisted dying will be addressed in a separate report to be tabled by the Committee by 31 March 2020. Recommendations relating to the law and clinical, palliative and aged care practice include:
A summary of the full report is available here. The Queensland Inquiry follows similar inquiries in Victoria in 2015-2016, and in Western Australia and the Australian Capital Territory (2017-2018). The South Australian Parliament is currently inquiring into end of life choices.
End of Life Law in Aged Care (ELDAC) has released a series of new educational videos for residential aged care workers and home care workers on topics including Recognising End of Life, Assessing Palliative Care Needs, and Managing Dying. These are complimented by a new video for health professionals and others working in aged care on end of life law in aged care.
The Medical Republic has also this week released a podcast ‘Is that legal? Docs and the law in end-of-life care’. In the podcast, Professor Ben White from the Australian Centre for Health Law Research, QUT, explains why end of life law matters in medicine.
This week we provide updates on:
Victoria’s Voluntary Assisted Dying Review Board has released its report on the first 6 months of voluntary assisted dying's (VAD) operation in Victoria. It reports that during the period June to December 2019:
The Board found that 100% of VAD cases complied with the requirements of the VAD legislation. The Board is due to report again in August 2020.
The team at End of Life Law in Australia has updated the Euthanasia and Assisted Dying webpage and Voluntary assisted dying brochure. These resources explore topics including:
To learn more visit the Euthanasia and Assisted Dying webpage .
Victoria’s new Guardianship and Administration Act 2019 (Vic) ('the Act') commenced on 1 March 2020. The Act introduces a range of reforms to the guardianship regime, to protect the rights of people with impaired capacity, including:
A supportive guardian may be appointed by VCAT to support a person with disability to make or give effect to their own decisions about personal matters (including medical treatment decisions) or financial matters. Depending on the appointment, a supportive guardian may have power to access or obtain information to help the person, as well as power to communicate with others about the person (e.g. health practitioners, banks). Unlike a guardian, they do not have power to make medical treatment decisions for the person.
For more information about the guardianship reforms visit the Office of the Public Advocate Victoria. Victorian laws on end of life decision-making are also discussed on our Victoria Stopping Treatment webpage.
ELDAC has released a new video on End of Life Law in Aged Care for health professionals and others working in aged care. In the video, Professors Lindy Willmott and Ben White from ELDAC and the Australian Centre for Health Law Research, Queensland University of Technology, explore common end of life legal issues in aged care, and discuss how knowing the law can support the delivery of high-quality palliative and aged care.
To view the video or explore other end of life law resources for aged care workers visit the ELDAC Legal Toolkit.
Nurses’ knowledge of law at the end of life and implications for practice - a qualitative study. Lindy Willmott, Ben White and Patsy Yates et al, (2020), Palliative Medicine
Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses’ concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered.
The aim of this study was to explore nurses’ experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief. Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales.
While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fear of hastening death and being held accountable was frequently discussed and regarded as relevant to the provision of inadequate pain and symptom relief. Concerns included potential civil or criminal liability and losing one’s job, registration or reputation. Two-thirds of participants believed that pain relief was sometimes withheld because of these legal concerns. Less than half of the interviewed nurses demonstrated knowledge of the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief.
The paper concludes that education is urgently required to strengthen nurses’ knowledge of the legal protections supporting the provision of appropriate palliative medication, thereby improving their clinical practice with end-of-life patients.
This week we provide updates on:
In December 2019 the Voluntary Assisted Dying Act 2019 (WA) was passed by the Western Australian Parliament and received Royal Assent. The new laws will permit VAD in Western Australia providing certain criteria are met. Western Australia's Department of Health is leading an 18-month implementation period of the new laws, which are expected to commence in mid-2021 (on a date to be fixed). Key features of the laws include:
We are working to update End of Life Law in Australia to bring you more information about the new laws soon. For further information visit the Western Australian Department of Health.
There have also been reports that a Voluntary Assisted Dying Bill may be introduced in the Tasmanian Parliament later this year.
Organ and tissue donation is a consideration which often arises at the end of life, both for people who are dying and their families. End of Life Law in Australia’s updated organ donation webpage explores the law on donation by deceased donors, including:
There is also a section exploring Australian law relating to posthumous reproduction. To learn more visit the Organ donation webpage.
Evidence-based law making on voluntary assisted dying, a new paper by Ben White and Lindy Willmott in the Australian Health Review, explores the importance of evidence-based law making by parliamentarians who make voluntary assisted dying laws. The authors argue that evidence-based law making is needed on voluntary assisted dying to enable optimal law making and regulatory frameworks for patients, health professionals and health systems.
We are delighted to announce that the End of Life Law for Clinicians (ELLC) online training modules have received accreditation from the Royal Australian College of General Practitioners and the Australian College of Rural and Remote Medicine for the 2020-2022 triennium.
GPs have a critical clinical role in end of life care, including undertaking Advance Care Planning and coordinating the care of patients at the end of life. The free ELLC online modules aim to improve GPs' knowledge of end of life law; assist them to support patients (and patient's families) with end-of-life decision-making; and enhance their confidence to manage legal issues that arise in practice.
Up to 10 CPD Activity points may be claimed from the RACGP and up to 5 Professional Development Points from ACRRM (depending on the number of modules completed). The modules may be completed at any time; however it is recommended completion occur within 3 months of registering. GPs can choose to complete any number of modules. A certificate of completion is available for each module.
To enrol in the training visit the End of Life Law for Clinicians training portal..
This week we provide updates on:
New Zealanders will vote in a referendum to decide whether to introduce laws that would allow some terminally ill people to access assisted dying.
In a conscience vote in mid-November 2019, New Zealand’s Members of Parliament voted 69 votes to 51 to pass the End of Life Choice Act 2019. The legislation, which has received Royal Assent, will only come into force if a majority of the New Zealand public vote for that to occur at a referendum to be held as part of the New Zealand 2020 election.
If the Act comes into force, a person will be eligible to access assisted dying only if they are:
A person will not be eligible for assisted dying only because they are suffering from a mental disorder or mental illness; have a disability of any kind; or are of advanced age.
There are times when a person’s life is in danger and a decision about life-sustaining medical treatment must be made quickly. The End of Life Directions for Aged Care (ELDAC) Legal Toolkit provides useful resources for health professionals and aged care workers about legal issues that arise in relation to emergency situations, including when it is lawful to provide urgent medical treatment or transfer a person to hospital, and the law on consent in an emergency. There is a new case study about an older person in an emergency situation, and a factsheet that provides an overview of the law.
For further resources for health professionals and aged care workers to support palliative care and Advance Care Planning for older Australians visit ELDAC.
Two recent scholarly articles report on aspects of end of life decision-making:
Factors associated with non-beneficial treatments in end of life hospital admissions: A multicentre retrospective cohort study in Australia. Hannah Carter et al (2019) BMJ Open:
“This paper quantitatively assesses the factors associated with non-beneficial treatments (NBTs) in hospital admissions at the end of life through a retrospective multicentre cohort study conducted at three large, metropolitan tertiary hospitals in Australia. The cohort comprised 831 adult patients who died as inpatients following admission to the study hospitals over a 6-month period in 2012.
Overall, 103 (12.4%) admissions involved NBTs. Admissions that involved conflict within a patient’s family or conflict within the medical team had the strongest associations with NBTs. A positive association was observed in older patients, with each 10-year increment in age increasing the likelihood of NBT by approximately 50%. There was also a statistically significant hospital effect.
This paper presents the first statistical modelling results to assess the factors associated with NBT in hospital, beyond an intensive care setting. These findings highlight potential areas for intervention to reduce the likelihood of NBTs”.
A Doctor’s Discretion Not To Offer Life-sustaining Treatment. James Cameron, (2019), Journal of Law and Medicine:
“A doctor may make a unilateral decision to withdraw or withhold life-sustaining treatment from a patient. Recent cases involving critically ill children in Australia, England and Wales have demonstrated how doctors may determine a child’s life is not worth maintaining despite parental demands for treatment.The breadth of a doctor’s discretion to not provide treatment is ambiguous though, and the extent to which a doctor may make unilateral quality of life judgments is not clear. The ambiguity arises because of different framing of a doctor’s obligations, a lack of clear role delineation between relevant decision-makers and differences in opinion about the appropriate scope of inquiry when applying concepts like “futility” and “best interests”. This ambiguity is likely to cause confusion in practice and may be the difference between a child receiving life-sustaining treatment”.
The End-of-Life Law and Policy in Canada website, Health Law Institute, Dalhousie University provides user-friendly, accurate information about end of life law, policy and practice in Canada. Designed for the public, media, healthcare providers and policy makers, it addresses topics including:
For further information and resources visit End-of-Life Law and Policy in Canada.
The End of Life Law for Clinicians webinar explores end of life law in the context of a clinical case study about an older person in residential aged care. It aims to improve your knowledge of end of life law and help you manage legal issues in end of life decision-making that may arise in clinical or aged care practice.
The webinar, filmed on 9 October 2019, features Professor Ben White and Associate Professor Shih-Ning Then, Australian Centre for Health Law Research, QUT, with clinical co-presenters Dr Peter Saul, Senior Specialist in Intensive Care, John Hunter Hospital, Newcastle and Dr Bill Lukin, Palliative and Emergency Medicine Specialist, Royal Brisbane and Women's Hospital.
If you are a doctor, medical student or health professional we invite you to visit End of Life Law for Clinicians to complete our free online training modules. CPD points are available.
Where medical treatment is considered to be futile, non-beneficial or not in a person’s best interests, a decision may be made to withhold or withdraw it. However, people may disagree about what futility means and when treatment is non-beneficial, which can make these decisions complex. The End of Life Directions for Aged Care Legal Toolkit provides useful resources for GPs and aged care workers about the law on futile treatment, including a new case study about an older person receiving home care, and factsheet that provides an overview of the law in this area.
For further information and resources for health professionals and aged care workers to support palliative care and Advance Care Planning for older Australians visit ELDAC.
The Western Australian Legislative Council is continuing to debate the Voluntary Assisted Dying Bill 2019 (WA). Debate will resume in coming weeks. The Council next sits on 19 November 2019.
In Canada, two recent legal cases have resulted in changes to the eligibility criteria for medical assistance in dying (MAiD). In the first case, the Quebec Superior Court removed the requirement that a person's natural death must be 'reasonably foreseeable' in order for him or her to be eligible for MAiD. A second case, Lamb v Canada (British Columbia Supreme Court) has seen the interpretation of a 'reasonably foreseeable' death expanded to include situations where a person demonstrates 'a clear intent to take steps to make their natural death happen soon or to cause their death to be predictable'. An overview of these cases is provided in a recent article by Professor Jocelyn Downie, Dalhousie University.
There is still time to register for End of Life Law for Clinicians' free, online webinar on the evening of Wednesday 9 October 2019.
Improving your knowledge of end of life law can enhance your capacity to manage legal issues in end of life decision-making, leading to improved quality of care and practice.
Time
Registration
To register visit our registration page. RSVPs close Monday 7 October 2019.
Western Australia recently became closer to becoming the second Australian jurisdiction to legalise assisted dying after the Voluntary Assisted Dying Bill 2019 was passed in WA's Legislative Assembly (45 votes to 11) in late September. The Bill, which was passed without amendment, will now be considered by the WA Legislative Council. The Council will next sit on 15 October 2019.
To learn more about Assisted dying laws in Australia read our factsheet or visit the End of Life Directions for Aged Care Legal Toolkit
Two recent scholarly articles report on aspects of voluntary assisted dying:
Regulating voluntary assisted dying in Australia: Some insights from the Netherlands. Brejje Onwuteaka‐Philipsen, Lindy Willmott and Ben White, (2019), Medical Journal of Australia.
Over two decades of Dutch experience with voluntary assisted dying can inform deliberations about the nature of a regulatory framework in Australian jurisdictions. This article considers three issues from this perspective:
Restricting conversations about voluntary assisted dying: Implications for clinical practice. Lindy Willmott, Ben White, Danielle Ho, James Downar and Luc Deliens, (2019), BMJ Supportive and Palliative Care.
From 19 June 2019, assisted dying became lawful in Victoria, the second most populous state in Australia. Section 8 of the Voluntary Assisted Dying Act is a legislative safeguard that is designed to ensure a patient’s request for assistance to die is voluntary. This section prohibits health practitioners from initiating a conversation about assisted dying with the patient. This article explores the potential implications of this prohibition for effective communication between doctors and their patients, and the ability of doctors to provide high quality end‐of‐life (EOL) care in some cases.
End of Life Law for Clinicians is excited to announce our free, online webinar will be taking place on the evening of Wednesday 9 October 2019.
Improving your knowledge of end of life law can enhance your capacity to manage legal issues in end of life decision-making, leading to improved quality of care and practice.
Time
Registration
To register visit our registration page. RSVPs close Monday 7 October 2019.
Webinar
This webinar will explore end of life law in the context of a clinical case study about an older person in residential aged care. Topics that may be explored include:
The webinar is open to all clinicians and medical students. CPD points and certificates of completion are available.
Presenters
The webinar will be delivered by Professor Ben White and Associate Professor Shih-Ning Then, Australian Centre for Health Law Research , Queensland University of Technology, with clinical co-presenter Dr Peter Saul, Senior Intensive Care Specialist, John Hunter Hospital, Newcastle.
Access
To access the webinar, you require a computer with sound and video capabilities.
We hope you can join us for the webinar. For further information email endoflifelaw@qut.edu.au
Western Australia may become the second jurisdiction in Australia to legalise voluntary assisted dying (VAD) after tabling the Voluntary Assisted Dying Bill 2019 on 7 August 2019.
The WA Bill is based on Victoria's VAD laws, but with some key differences, including allowing for nurse practitioners to administer the VAD medication; and allowing doctors to initiate discussions about VAD with their patients (which is prohibited in Victoria).
Further information on the key provisions of the WA Bill, and how it differs from the Victorian law are discussed in a recent article by Ben White and colleagues in The Conversation. Parliamentary debate on the Bill is expected to commence before the end of 2019.
To learn more about Assisted dying laws in Australia read our factsheet or visit the End of Life Directions for Aged Care Legal Toolkit
This week we provide updates on:
PalliMEDS is an evidence-based app developed by NPS MedicineWise for caring@home, a project which aims to contribute to the provision of quality palliative care for Australians who wish to be cared for, and to die at home.
The palliMEDS app summarises Australian recommendations for eight palliative care medicines endorsed by the Australian & New Zealand Society of Palliative Medicine. Health professionals can search by symptom or medicine, view dosing information and see which medicines are TGA approved and PBS listed.
The app includes a section on medico-legal issues at the end of life, alongside information on medicine management at the end of life, use of off-label medicines, and carer support. The app also links users to the End of Life Law for Clinician’s training modules, including a module on the law relating to providing palliative medication.
To update or download the palliMEDS app (which is free) visit Google Play and the App Store.
The South Australian Parliament has amended the State’s Advance Care Directive laws to allow health practitioners to disregard a person’s Advance Care Directive that refuses health care (e.g. resuscitation) where they believe, on reasonable grounds, that the person has attempted to commit suicide. The health care that is refused must related to the suicide attempt. The new provision enables health practitioners to provide life-sustaining treatment in those circumstances.
For more information on Advance Care Directives in South Australia visit our webpage.
Five new case studies have been added to the End of Life Directions for Aged Care Legal Toolkit for GPs, nurses and others working in aged care who would like to learn more about managing common end of life legal issues that arise in practice. The new case studies are:
A new factsheet on Assisted Dying has also been released, explaining the law in Australia and Victoria.
Western Australia’s Ministerial Expert Panel on Voluntary Assisted Dying tabled its Final Report in Parliament on 27 June 2019.
The report provides recommendations on the proposed legislation for voluntary assisted dying (VAD) in Western Australia. Key recommendations include:
Additionally, death must be reasonably foreseeable within 12 months.
The report was tabled shortly after the first terminally ill person in Victoria was granted permission to have a medically assisted death under that State’s new VAD laws.
This week we provide an update on the commencement of Victoria's Voluntary Assisted Dying laws.
Today new assisted dying laws commence in Victoria, the first time in over 20 years that assisted dying has been lawful in an Australian State or Territory.
The Voluntary Assisted Dying Act 2017 (Vic) enables a person with capacity with an incurable illness or condition to seek assistance to end their life in limited circumstances. The legislation sets out 68 safeguards, including strict eligibility criteria, making it 'one of the most conservative' assisted dying laws in the world.
To learn more about the new laws, who is eligible, processes and safeguards, and assisted dying in Australia, read our new Assisted Dying factsheet.
The following resources also provide information about assisted dying and end of life law:
This week we provide updates on:
We are delighted to announce that the End of Life Law for Clinicians (ELLC) online training modules have received accreditation from the Australian College of Rural and Remote Medicine.
In rural and remote settings, General Practitioners are often the key health professionals providing care for patients at the end of life. The ELLC online modules aim to improve GPs' knowledge of end of life law; assist them to support patients (and patient's families) with end-of-life decision-making; and enhance their confidence to manage legal issues that arise in practice. The training is designed for GPs, clinicians and medical students, and can also be undertaken by nurses and other healthcare professionals.
Topics covered include capacity and consent to medical treatment, withholding and withdrawing treatment, Advance Care Directives, substitute decision-making, providing palliative medication, futile or non-beneficial treatment, emergency treatment, end-of-life decision-making for children, and managing disputes.
The modules may be completed at any time; however it is recommended completion occur within 3 months of registering. GPs can choose to complete any number of modules, or all ten (approx 4.5 hours in total). A certificate of completion is available for each module.To enrol in the training visit the End of Life Law for Clinicians training portal.
ELLC is also accredited by the Royal Australian College of General Physicians for the 2017-2019 triennium.
The Victorian Parliament last week passed the Guardianship and Administration Act 2019 (Vic) to better protect the rights of people with impaired decision-making capacity.
The new Act, which replaces the Guardianship and Administration Act 1986 (Vic) will introduce key changes including:
The new Act will commence on a date to be proclaimed, and any sections not in operation by 1 March 2020 will commence on that date.
In a recent perspective article in the Medical Journal of Australia Dr Geoffrey Mitchell and colleagues explore whether doctors should fear legal sanction for using opioids at the end of life. The authors argue that the law does not seek to punish medical professionals where death is an unintended consequence of opioid administration, and that so long as the intention is to alleviate suffering good clinical practice will be respected by the law. Further information about the law on providing palliative medication is available on our Palliative Medication webpage.
For further legal perspectives on this issue see Willmott, Lindy, White, Ben, Piper, Donella, Yates, Patsy, Mitchell, Geoffrey, & Currow, David (2018) Providing palliative care at the end of life: Should health professionals fear regulation? Journal of Law and Medicine 26(1), pp. 214-245.
This week we provide updates on:
We are delighted to announce that the End of Life Law for Clinicians (ELLC) online training modules have received accreditation from the Royal Australian College of General Physicians for the 2017-2019 triennium (Category 2).
GPs have a critical clinical role in end of life care, including undertaking Advance Care Planning and coordinating the care of patients at the end of life. They also play a significant legal role when providing this care, e.g. when assessing a patient’s capacity to make treatment decisions; determining who their substitute decision-maker is; or deciding whether to follow a patient’s Advance Care Directive.
The ELLC online modules aim to improve GPs' knowledge of end of life law; assist them to support patients (and patient's families) with end-of-life decision-making; and enhance their confidence to manage legal issues that arise in practice.
Topics covered include capacity and consent to medical treatment, withholding and withdrawing treatment, Advance Care Directives, substitute decision-making, providing palliative medication, futile or non-beneficial treatment, emergency treatment, end-of-life decision-making for children, and managing disputes.
The modules may be completed at any time; however it is recommended completion occur within 3 months of registering. GPs can choose to complete any number of modules. A certificate of completion is available for each module.
To enrol in the training visit the End of Life Law for Clinicians training portal.
Two recent scholarly articles report on the prevalence of Advance Care Directives in Australia:
Both studies recommended uptake of ACP could be improved through greater promotion e.g. education campaigns among the community and health professionals, as well as other strategies (e.g. uniform documentation across Australia).
Learn more about Advance Care Directives at End of Life Law in Australia, or through the ELDAC Legal Toolkit.
Victorian doctors in specialties likely to be involved in end-of-life decisions are being surveyed about their decision-making practices involving adult patients. Researchers from the NHMRC-funded Centre of Research Excellence in End-of-Life Care are conducting a study to determine what sort of end-of-life decisions are being made by doctors, how often these decisions occur and for what sort of patients.
At present, there is no up-to-date, representative Australian data describing the frequency and nature of medical end-of-life decisions involving adults, and the characteristics of patients about whom such decisions are made. The research aims to provide an evidence base to understand current medical practice in Victoria including the extent to which palliative care is provided to patients at the end of life. Findings from this research will also inform improvements in the quality of end-of-life care.
A sample of Victorian doctors are being invited to complete a paper or online survey from 23 April 2019. This survey is being sent to doctors’ practice and/or email address which is on the Medical Directory of Australia maintained by The Australian Medical Publishing Company (AMPCo). The survey can be completed in hard copy or online. Participating doctors will go into the draw for one of three prizes to the value $100, in fine wine, or a donation to a registered charity of their choice.
If you have any queries about this research, please feel free to contact Dr Rachel Feeney at rachel.feeney@qut.edu.au . The research team is grateful for the time and insight of the doctors who support this research by completing this survey.
This week we provide updates on:
National Advance Care Planning Week (1 - 5 April 2019) encourages all Australians to speak up about their future healthcare preferences and make sure their voice is heard and respected, regardless of what the future brings. It is also an opportunity to learn about the law and your rights relating to Advance Care Planning, Advance Care Directives and end of life treatment by:
For more information about events visit National Advance Care Planning Week.
The Advance Project is a free training program for GPs, nurses and practice managers, which promotes a team-based approach to initiating Advance Care Planning and palliative care in General Practice. The project is led by HammondCare in collaboration with CareSearch, other health organisations and universities, and is funded by the Australian Government Department of Health.
The training program comprises:
The training modules explain how to use these resources in every day clinical practice. The training will enable GPs and nurses to:
The training modules also enable General Practice Managers to support GPs and nurses to implement the resources in routine general practice.
The training program is endorsed or accredited by the relevant professional associations, including Australian Primary Health Care Nurses Association (APNA), the Royal Australian College of General Practitioners (RACGP) and the Australian College of Rural and Remote Medicine (ACRRM). The training counts towards CPD requirements.
To register visit The Advance Project. For more information please click on the flyer and information sheet or email AdvanceProject@hammond.com.au
The Western Australian Department of Health has released a discussion paper on voluntary assisted dying. The discussion paper, prepared by the Ministerial Expert Panel on Voluntary Assisted Dying, discusses key issues for consideration in developing legislation that would allow voluntary assisted dying in Western Australia. Submissions are sought by 24 May 2019.
The discussion paper follows the Western Australia Government’s announcement it would develop legislation, a recommendation arising from the Joint Select Committee’s End of Life Choices Inquiry’s My Life, My Choices Report in 2018. The Department will also shortly commence public consultations.
An ACT Select Committee has released its final report arising from it inquiry into end of life choices. It contains 24 recommendations for improvement of end of life and palliative care, including safeguards for voluntary assisted dying in the ACT if the territory is permitted to legalise the practice in the future.
This week we provide updates on:
A Queensland Parliamentary Committee has called for submissions on its Issues Paper for the State’s Inquiry into aged care, end-of-life and palliative care. The due date for submissions is 15 April 2019 .
The Inquiry will examine:
In undertaking the inquiry, the committee should consider:
The Committee’s reporting deadline is 30 November 2019.
A team of researchers from the Australian Centre for Health Law Research has published a new article in the Medical Journal of Australiaexploring some of the challenges of implementing Victoria's Voluntary Assisted Dying laws, and their translation into clinical practice ahead of the commencement of the laws on 19 June 2019.
A podcast on this topic, with one of the paper's authors, Professor Ben White, is also available at the MJA.
The National Palliative Care Strategy 2018 has been endorsed by all Health Ministers at the COAG Health Council and is now publicly available.
This Strategy follows the National Palliative Care Strategy 2010 and has been developed through extensive consultation with Commonwealth, state and territory health departments, carers, peak bodies for consumers and service providers, clinicians, service managers, and a range of public, private and not-for-profit organisations involved in palliative care. It's purpose is to guide the improvements of palliative care across Australia.
It identifies six guiding principles fundamental to ensuring all people experience the palliative care they need:
It also contains seven goal areas:
The strategy will be implemented over the next five years and will be guided bu an Implementation Plan.
This week we provide updates on:
A guest blog post by Professors Ben White and Lindy Willmott, Distinguished Professor Patsy Yates, and Penny Neller, QUT
(First published on the CareSearch Palliative Perspectives Blog, 8 February 2019, reproduced with permission).
Australia is fortunate to have one of the highest standards of palliative care and health care in the world. Despite this, there is increasing anecdotal evidence, both in Australia and overseas, that some people do not have their pain and symptoms adequately controlled as they approach death, suggesting that some may be under-treated or experience pain at the end of life.
This is undesirable not only because of the adverse impact upon a person’s quality of life as they approach death, but also due to the distress this causes the person’s family, and also their treating health professionals.
Research indicates that factors such as delay in identifying patients whose deaths can be anticipated; lack of access to care at the right time; and fears and denial of death by patients, families and health professionals are barriers to appropriate pain and symptom relief at end of life. What is not well known, however, is the extent to which fear among health professionals about possible legal liability (e.g. criminal, civil or disciplinary sanctions) if a person dies after receiving medication contributes to this under-treatment of pain and symptoms.
In a recent article we published in the Journal of Law and Medicine, with colleagues from the University of New England, the University of Queensland, and the University of Technology Sydney, we explored whether concerns by health professionals about possible legal or professional repercussions for providing pain and symptom relief were reflected in the legal system. After examining Australian laws (including legal cases and coronial proceedings) and regulatory frameworks relating to this area, we concluded that these concerns are not well-founded. This is because:
To assist health professionals in aged care to know more about the law, including when providing medication for pain and symptom relief at the end of life, we developed the ELDAC Legal Toolkit. It contains information and resources to help health professionals and aged care workers tackle legal issues that commonly arise in aged care practice.
The Toolkit contains factsheets, mythbusters, case studies and resources on legal topics including Medication for pain and symptom relief(palliative medication). In that factsheet we explain the law on providing palliative medication, including why appropriate palliative medication is lawful, and the protection provided by the doctrine of double effect. The case study on that topic also provides an example of appropriate, lawful administration of medication for pain and symptom relief.
For those who are interested in learning more, we also recently launched at QUT a free online training program called End of Life Law for Clinicians. This training has an online module about Providing Palliative Medication (Module 6), which can be accessed by registering through the ELLC online training portal.
The End-of-Life Essentials team at Flinders University have produced more free evidence-based online education to assist health professionals to increase their capacity and confidence in end-of-life care.
The new modules include:
No matter how skilled or inexperienced, there is the opportunity to grow and learn more with self-reflection learning opportunities provided in each module.
Interwoven in all the End-of-Life Essentials education is a focus on clinical compassion. With a recognition that compassion in fast paced environments is possible, learners are encouraged to consider the patient’s point-of-view as essential in understanding their presentation to an acute hospital.
The End-of-Life Essentials Tool Kit has also been updated and consists of a range of resources to assist with implementation of positive changes to improve the quality of end of life care at work.
For more information please visit endoflifeessentials.com.au or contact us on eolessentials@flinders.edu.au
This week we provide updates on:
We are delighted to announce the launch of End of Life Law for Clinicians, a new free training program about the law at end of life, developed by the Australian Centre for Heath Law Research and Institute of Health and Biomedical Innovation, QUT, with funding from the Australian Department of Health.
The training is designed to help clinicians and students improve their knowledge of end of life law, to better support patients and families and mange legal issues that arise in practice.
The ELLC training program comprises:
Topics addressed include:
The training is complemented by the End of Life Law in Australia website, which provides comprehensive information about end of life law across all Australian States and Territories.
To register for the training visit the ELLC online training portal.
The training was developed in response to findings from empirical research conducted by Professors Ben White and Lindy Willmott, with colleagues from Southern Cross University and the University of Queensland. Their research found significant knowledge gaps among doctors about end of life law and decision-making. Encouragingly, most respondents indicated they believe law has a place in medical practice, and most were interested in knowing more about the law.
ELLC is designed for doctors and medical students, and may also be of interest to nurses and allied health professionals.
Continuing professional development points may be available from specialty Colleges and other medical professional organisations for this training.
Case-study based workshops will also be held across Australia in 2019 and 2020. The workshop program will soon be available on this website.
For further information about ELLC contact endoflifelaw@qut.edu.au .
A new webpage on Capacity and consent to medical treatment is now available on End of Life Law in Australia. The webpage explores the requirements for valid consent to medical treatment, and the law on when an adult will have capacity to make decisions about medical treatment. It also provides information about the law on these issues by State and Territory.
The law on consent to treatment for children is different from the law about adults, and can be accessed on the Children and end of life decision-making webpage.
This week we provide updates on:
The Tasmanian Law Reform Institute has released its final report arising from its Review of the Guardianship and Administration Act 1995 (Tas). It is the first comprehensive review undertaken since the Act came into force over 20 years ago.
The report contains over 140 recommendations for reform. Key recommendations include:
The report is currently being considered by the Tasmanian Government.
A team of researchers from the Australian Centre for Health Law Research, led by Dr Andrew McGee, has published a new article in the University of New South Wales Law Journal (UNSWLJ) exploring how Australian politicians approach euthanasia and assisted suicide when they are voting on whether to pass a bill to legalise those practices.
The paper maps pro- and anti-euthanasia and assisted dying arguments advanced by Australian politicians, starting from the time the first ever euthanasia Bill was introduced. It argues that:
The paper follows a 2016 paper published by the authors in the UNSWLJ: (Failed) Voluntary euthanasia law reform in Australia: Two decades of trends, models and politics.
The Voluntary Assisted Dying Act 2017 (Vic) will come into force in Victoria in June 2019, becoming the first law in Australia in 20 years to permit voluntary assisted dying (VAD).
In a new Australian Health Review article, Ben White and Lindy Willmott (Australian Centre for Health Law Research, QUT) consider how other Australian states and territories are likely to respond to this development.
They analyse three key factors that suggest that law reform is likely to occur in other parts of Australia:
(1) the growing international trend to permit VAD;
(2) social science evidence about how VAD regimes operate; and
(3) changes to the local political environment.
They argue that these three factors, coupled with the effect of Victoria changing its law, suggest that other VAD law reform is likely to occur in Australia. It also considers the different types of laws that may be adopted, including whether other states and territories will follow the very conservative Victorian approach or adopt more liberal models.
This week we provide updates on:
A Queensland Parliamentary Committee has released the terms of reference for the State’s Inquiry into aged care, end-of-life and palliative care. The Inquiry will examine:
Queensland is the fifth Australian State or Territory since 2015 to inquire into law and policy relating to the end of life and palliative care, following Victoria, Tasmania, the Australian Capital Territory, and Western Australia.
The due date for submissions to the Inquiry is yet to be announced, but stakeholders can register here for notifications. The Committee’s reporting deadline is 30 November 2019.
A Bill to legalise voluntary assisted dying will be introduced in Western Australia in the second half of 2019.
The announcement follows the recommendations of the Joint Select Committee on End of Life Choices in its August report My Life, My Choice. The Committee recommended the establishment of an expert panel to undertake consultation and develop legislation for voluntary assisted dying in Western Australia .
It further recommended 'those who are eligible for voluntary assisted dying must be experiencing grievous and irremediable suffering related to an advanced and progressive terminal, chronic or neurodegenerative condition that cannot be alleviated in a manner acceptable to that person, where death is a reasonably foreseeable outcome of that condition".
Academics at the Australian Centre for Health Law Research, with academic colleagues, have recently published the following new articles on end of life law:
Anecdotal evidence suggests that health professionals may fear potential legal and/or professional repercussions if their patient dies after receiving pain relieving medication at the end of life. As a result, patients may be under-medicated and their pain and other symptoms not adequately relieved. The regulatory repercussions from inappropriate administration of medications include criminal charges, civil negligence claims, coronial investigations and disciplinary proceedings. But despite these potentially serious repercussions, a review of publicly available cases in Australia reveals there has been comparatively little judicial or quasi-judicial scrutiny where over-medication is alleged to have resulted in a patient’s death.
In this recent article the authors explore the regulatory framework governing this area, the extent to which health professionals' actions have been scrutinised, and the consequences. They conclude that fears of legal or professional repercussions are largely unfounded, and that existing laws and other forms of regulation should not inhibit the prescription and administration of adequate pain and other symptom relief to people at the end of life.
Much of the commentary in the wake of the Charlie Gard litigation was aimed at apparent shortcomings of the law. These include concerns about the perceived inability of the law to consider resourcing issues, the vagueness of the best interests test and the delays and costs of having disputes about potentially life-sustaining medical treatment resolved by the courts.
In this article, the authors argue that many of these criticisms are unfounded. They examine the basic legal framework that operates when parents seek potentially life-sustaining treatment that doctors believe is against a child’s best interests, and describe the criticisms of that framework. They suggest an alternative approach that would give decision-making power to parents, and remove doctors’ ability to unilaterally withhold or withdraw life-sustaining treatment they regard as futile. The authors also contend that the best interests test is justifiable, and defend the current role that the judiciary plays in these decisions.
This week we provide updates on:
A guest blog post by Penny Neller, Professor Lindy Willmott and Professor Ben White, Australian Centre for Health Law Research, QUT
(First published on the CareSearch Palliative Persepctives Blog, 8 October 2018, reproduced with permission).
End of life law governs medical decisions made at the end of life, as well as around Advance Care Planning.
Every year in Australia thousands of deaths occur following a medical decision to withhold or withdraw life-sustaining treatment. This is just one type of end of life decision which may arise in aged care practice. For example, health professionals and aged care workers may also be called upon to:
In these situations, health professionals and aged care workers perform a legal role. To do this effectively (and to understand what is lawful, and what is not) they need to know end of life law, and where to go for information and advice to manage legal issues. To support health professionals and aged care workers, End of Life Directions for Aged Care (ELDAC) has developed the Legal toolkit with information and resources to help them tackle legal issues that commonly arise in aged care practice.
Using the Legal toolkit can:
Most importantly, understanding the law matters to the people being cared for, and their families. The law is designed to protect individuals’ rights so that people receive treatment that is consistent with their goals and preferences. Respecting a person’s care and treatment decisions can support them to be comfortable for the remainder of their life, and experience a ‘good death’.
The ELDAC Legal toolkit was designed by end of life law experts. It contains factsheets, mythbusters, case studies and resources on each of the following legal topics: Capacity and consent to medical treatment; Advance Care Directives; Substitute decision-making; Withholding and withdrawing life-sustaining treatment; Medication for pain and symptom relief; Futile or non-beneficial treatment. There is also a factsheet which provides an overview of End of life law for the Aged care sector, and explains the role of law in aged care practice.
Unfortunately, end of life law is complex, and can be complicated to apply in practice. The law that applies is different depending on whether or not a person has capacity. The law also differs across Australia, as each State and Territory has its own end of life laws. To help address this the factsheets provide a general overview of Australian law each topic, and contain useful links to End of Life Law in Australia, a website created by the toolkit authors which provides detailed information on end of life law in each Australian State and Territory.
The mythbusters clarify common myths about the law, while the case studies (which are based on real issues in aged care) show how the law applies to aged care practice.
From late January 2019 toolkit users will also be able complete online training modules about end of life law through the End of Life Law for Clinicians training project at QUT. Links to the training modules will be uploaded to the legal toolkit in early 2019. For further information and updates about the online training modules email endoflifelaw@qut.edu.au .
The Legal toolkit is online and freely accessible here.
Registrations and abstracts are open for the 3rd International Conference on End of Life Law, Ethics Policy and Practice from 7-9 March 2019 in Ghent, Belgium. This multidisciplinary conference will see leading experts from around the world present on a range of end of life topics. The conference themes are:
Abstracts are due 15 October 2018. To register, or for further information visit www.ICEL3.org
The conference is co-hosted by the End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, in conjunction with the Australian Centre for Health Law Research, QUT, Dalhousie Health Law Institute, Dalhousie University, Canada, and the International Collaborative for End of Life Care Research, Europe.
The 7th Advance Care Planning International Conference (ACP-i, formerly ACPEL) will be hosted from 13-16 March 2019 in De Doelen in Rotterdam, the Netherlands. This conference aims to discuss new research findings and innovative approaches for advance care planning.
Abstracts are due 28 October 2018. To register, or for further information visit www.acpi2019.com
(First published in the QUT Faculty of Law News, October 2018)
Professor Luc Deliens joined the QUT Faculty of Law's Australian Centre for Health Law Research (ACHLR) to deliver a public lecture on assisted dying and palliative care.
Professor Deliens explored the complex relationship between assisted dying and palliative care services within the context of legalised euthanasia in Belgium. In the international debate about assisted dying, it is often suggested that assisted dying is incompatible with palliative care. However, Professor Deliens shed light on 15 years of voluntary assisted dying in Belgium and concluded that in the context of legalised euthanasia, euthanasia and palliative care do not seem to be contradictory practices.
Professor Deliens is a Professor of End of Life Care Research at Ghent University and Vrije Universiteit Brussel, and an international expert in this field. During his month-long stay in Australia at QUT, he is also working as an Adjunct Professor with ACHLR.
With the Queensland Government recently announcing a parliamentary inquiry into assisted dying and Victorian assisted dying laws set to start next year, Professor Deliens’ comments were particularly relevant and initiated robust conversation amongst the audience.
ACHLR’s 6th Annual Public Oration attracted a large audience of doctors, nurses, lawyers, health policy workers and administrators, consumer groups and advocacy groups on both sides of the issue regarding the legalisation of assisted dying. QUT Faculty of Law Professor Ben White, specialising in end-of-life law and practice, shared his experience of the event.
“Professor Deliens’ presentation shows the importance of rigorous empirical research into assisted dying. His work on how palliative care integrates with assisted dying in Belgium will be critical for Victoria and indeed Australia as we consider this issue here.”
If you would like to watch the lecture, please visit the QUT Youtube Channel.
This week we provide updates on:
The Victorian Government has released the Voluntary Assisted Dying Regulations 2018 (Vic) to support the Voluntary Assisted Dying Act 2017(Vic). The regulations set out how aspects of Victoria's voluntary assisted dying laws, to commence on 19 June 2019, will operate. Key regulationsinclude:
The regulations also include prescribed forms for voluntary assisted dying permits and permit applications, as well as for labelling statements for a voluntary assisted dying substance.
Victoria Health has also recently released new resources for consumers and the community which explain the voluntary assisted dying regime.
End of Life Directions for Aged Care (ELDAC) has released new Legal Toolkit factsheets, myth busters and case studies on the following topics:
The Legal Toolkit is designed to provide practical information about end of life law for the aged care sector, and to help health professionals and aged care workers to manage legal issues which arise in practice. It was developed by Professors Lindy Willmott and Ben White, and Penny Neller, Australian Centre for Health Law Research, as part of the ELDAC national consortium, comprising researchers from QUT, UTS, Flinders University, the Australian Healthcare and Hospitals Association, Palliative Care Australia, Catholic Health Australia, Aged & Community Services Australia, and Leading Age Services Australia.
To learn more, visit ELDAC or sign up for the ELDAC newsletter.
Queensland Premier Annastacia Palaszczuk has announced a parliamentary inquiry into end of life care, including voluntary euthanasia, aged care and palliative care. Terms of reference and the call for submissions have not yet been announced.
Queensland will be the fourth Australian State or Territory to undertake an end of life inquiry, following Victoria (in 2015-2016), Western Australia(2017-2018), and the Australian Capital Territory (ongoing).
The Western Australian Joint Select Committee on End of Life Choices has tabled its final report My Life, My Choices. The report arises from its inquiry into 'the need for laws in Western Australia to allow citizens to make informed decisions about their own end of life choices'.
Among the Committee's 24 recommendations is that the Minister for Health establish an expert panel to undertake consultation and develop legislation for voluntary assisted dying in Western Australia. It further recommends 'those who are eligible for voluntary assisted dying must be experiencing grievous and irremediable suffering related to an advanced and progressive terminal, chronic or neurodegenerative condition that cannot be alleviated in a manner acceptable to that person, where death is a reasonably foreseeable outcome of that condition'.
The recommendations will now be considered by the Western Australian government.
The New South Wales Law Reform Commission has released its final report into its Review of the Guardianship Act 1987 (NSW). Following widespread public consultation and review, the Commission's key recommendations include:
The final report has been tabled in the New South Wales Parliament.
The Australian Centre for Health Law Research is delighted to host Professor Luc Deliens to present the 6th ACHLR Annual Oration Assisted dying and palliative care: two antagonistic practices or two side of the same coin? on Thursday 20 September 2018.
In the international debate about assisted dying, it is commonly stated that assisted dying is incompatible with palliative care. In Belgium, where euthanasia was legalised in 2002, empirical evidence can shed light on this relationship. In a context of legalised euthanasia, euthanasia and palliative care do not seem to be contradictory practices. A substantial proportion of people who make a euthanasia request are seen by palliative care services, and for a majority of these, the request is granted. The Federation for Palliative Care Flanders-Belgium strongly opposed the legalisation of euthanasia before the euthanasia law was implemented in 2002, but their position has changed dramatically since then. In their latest position statement, they endorsed the viewpoint that euthanasia can be embedded in palliative care.
In this lecture, Professor Deliens will explore the complex relationship between euthanasia and palliative care services within a context of legalised euthanasia in Belgium.
Professor Deliens is a Professor of Palliative Care Research, Member of the Royal Academy of Medicine of Belgium, and Founding Director of the End-of-Life Care Research Group of the VUB University & Ghent University.
To register visit QUT Law events.
Date: Thursday 20 September 2018
When: 5:30pm canapes and beverages followed by a 6:00 - 7:30pm lecture
Where: Room Three-Sixty, Level 10, Y Block, QUT Gardens Point Campus, 2 George Street, Brisbane
RSVP: By Wednesday 12 September 2018
QUT is recruiting four new research positions across a range of end of life research projects. The positions will be based in the Australian Centre for Health Law Research at the Faculty of Law.
Two positions are to support the training for medical doctors under the new Voluntary Assisted Dying legislation in Victoria. The 3rd is a postdoctoral position on a National Palliative Care Project funded by the Commonwealth Health Department. The 4th is a postdoctoral position across a range of end of life projects.
There will be flexibility in the appointment process. Applicants may apply for more than one part-time position to seek full-time work. Applicants may also apply to undertake the full-time role on a part-time basis.
Applications close Thursday 23 August 2018. For more information and position descriptions visit Seek.
Advance Care Planning Australia is conducting a a study to understand the prevalence, characteristics and accessibility of of Advance Care Directives and other advance care planning documentation across Australian health and residential aged care services.
The 2017 Prevalence Pilot Study across 51 sites in Australia found the prevalence of Advance Care Directives and related documentation at around 30%, with the highest prevalence in aged care. Read the 2017 Study findings to learn more about this groundbreaking study.
GP clinics, aged care providers and hospitals are invited to participate in the 2018 study, which involves a health record audit of people aged 65 years and over. Applications close midnight on Thursday 9 August 2018. For further information, read the Application Guidelines and Frequently Asked Questions , or contact Advance Care Planning Australia.
The final report from the Australian Research Council-funded project Withholding and withdrawing life-sustaining medical treatment from adults who lack capacity: The role of law in medical practice has been released.
This three-year study explored the views and knowledge of medical specialists in Queensland, New South Wales and Victoria about the law with respect to withholding or withdrawing life-sustaining treatment from adults who lack decision-making capacity. Specialists from seven specialities involved in end-of-life care were surveyed (n=867): Intensive Care, Medical Oncology and Emergency, Palliative, Respiratory (Thoracic), Renal and Geriatric Medicine.
Key Findings
The project’s key findings can be accessed here. They are:
Attitude to Law
Knowledge of Law
Following the Law
Project recommendations
Publications
A full list of publications from this study is available here. To access publications electronically, visit the project web page.
Registrations are now open for the 3rd International Conference on End of Life Law, Ethics Policy and Practice from 7-9 March 2019 in Ghent, Belgium. This multidisciplinary conference will see leading experts from around the world present on a range of end of life topics. The conference themes are:
Presenting disciplines include, but are not limited to, law, medicine, nursing, philosophy and bioethics, and sectoral representation spanning practitioners, academics, NGOs, and regulators an policy-makers.The call for abstracts is now open, with abstracts due 1 October 2018.
The conference is co-hosted by the End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, in conjunction with the Australian Centre for Health Law Research, QUT, Dalhousie Health Law Institute, Dalhousie University, Canada, and the International Collaborative for End of Life Care Research, Europe.
To submit an abstract, register, or for further information visit www.ICEL3.org .
The 7th Advance Care Planning International Conference (ACP-i, formerly ACPEL) will be hosted from 13-16 March 2019 in De Doelen in Rotterdam, the Netherlands. This conference aims to discuss new research findings and innovative approaches for advance care planning.
The call for abstracts is now open, with abstracts due 28 October 2018. For further information visit www.acpi2019.com
The End of Life Directions for Aged Care (ELDAC) project was officially launched by the Minister for Aged Care, Hon Ken Wyatt, AM MP in Sydney on Friday 15 June. The ELDAC initiative aims to improve the care of older Australians by providing aged care workers and general practitioners with information, guidance, and resources to support palliative care and advance care planning for older people and their families.
The ELDAC project has previously released five toolkits to support aged care workers and general practitioners, including a Legal Toolkit which provides practical information on end of life legal issues commonly encountered in aged care practice. Other ELDAC resources include a telephone advisory service for aged care workers, GPs and nurses to obtain information and support relating to palliative care and advance care planning.
ELDAC comprises a national consortium of researchers and experts from QUT, UTS, Flinders University, the Australian Healthcare and Hospitals Association, Palliative Care Australia, Catholic Health Australia, Aged & Community Services Australia, and Leading Age Services Australia. It is funded by the Australian Government Department of Health’s Public Health and Chronic Disease Grant Program. To learn more, visit ELDAC or sign up for the ELDAC newsletter.
Medical advances have enabled doctors to prolong lives, yet some treatments towards the end of life have little chance of benefiting the patient. These treatments can cause moral distress to clinicians, increase risk of a ‘bad’ death by prolonging or increasing patient suffering, and result in wasted healthcare resources.
Researchers at QUT’s Australian Centre for Health Services Innovation (AusHSI) and the Australian Centre for Health Law Research (ACHLR) have been awarded a National Health and Medical Research Council Partnership Grant ($504,107) to investigate non-beneficial treatment at the end of life, in partnership with three hospitals. This project seeks to reduce non-beneficial treatment given to people at the end of life in hospital by increasing doctors’ awareness of the extent and impacts of non-beneficial treatment in this group.
The project builds on a recent Australian Research Council research project conducted by ACHLR, AusHSI and University of Queensland researchers on the legal, policy, sociological and economic perspectives relating to futile treatment. Key publications from that research include:
In early May 2018 the Victorian Guardianship and Administration Bill 2018 was introduced in the Victorian Legislative Council and had its second reading. The Bill was passed by the Legislative Assembly in late March 2018. If passed by the Legislative Council, it will replace the current Guardianship and Administration Act 1986 (Vic).
Key reforms proposed in the Bill include:
The Bill is awaiting further debate by the Legislative Council.
The Australian Government is rolling out My Health Record, an electronic health record, to every Australian unless they opt out between 16 July and 15 October 2018. Individuals are able to upload Advance Care Planning and Advance Care Directives information to their health record, enabling healthcare professionals to more readily access that information. For more information visit the Australian Digital Health Agency.
The Western Australian Department of Health and WA Cancer and Palliative Care Network have released a 10-year End-of-Life and Palliative Care Strategy for the State.
The Strategy provides policy direction and the vision, values and priorities for palliative and end of life care in Western Australia from 2018 - 2028. It also outlines six priority areas: Care is accessible to everyone, everywhere; Care is person-centred; Care is coordinated; Families and carers are supported; All staff are prepared to care; and The community is aware and able to care.
For more information visit the WA Cancer and Palliative Care Network.
This week we provide updates on:
A new website launched today under the End of Life Directions for Aged Care (ELDAC) initiative will provide practical information, and support to the aged care and palliative care sector on palliative care, advance care planning and end of life law.
The website, developed by the ELDAC national consortium (comprising QUT, UTS, Flinders University, the Australian Healthcare and Hospitals Association, Palliative Care Australia, Catholic Health Australia, Aged & Community Services Australia, and Leading Age Services Australia), is a gateway to innovative palliative care and aged care resources and services. A major website resource is five online toolkits to support aged care staff, palliative care professionals and general practitioners (GPs) to provide palliative care and undertake advance care planning.
The Legal Toolkit, developed for ELDAC by Professors Lindy Willmott and Ben White, and Penny Neller, Australian Centre for Health Law Research, provides practical information on end of life legal issues commonly encountered in aged care practice. Topics include:
Each topic has a factsheet providing a legal overview, 'mythbusters' to dispel common myths about the law, and a case study to demonstrate application of the law in aged care practice. Further resources on Capacity and Consent, Emergency Treatment and Managing Conflict will be available in coming months.
Other ELDAC Toolkits address Home Care, Primary Care, Residential Aged Care, and Working Together.
The ELDAC initiative also includes a telephone advisory service for aged care workers, nurses and GPs seeking information about palliative care and advance care planning; technology solutions; partnership projects; and policy projects. ELDAC which will run to 2020 and is funded by the Australian Government Department of Health under the Public Health and Chronic Disease Grant Program.
To learn more, visit the ELDAC website or sign up for the ELDAC newsletter.
On 12 March 2018 the new Victorian Medical Treatment Planning and Decisions Act 2016 (Vic) commenced operation, replacing the Medical Treatment Act 1988 (Vic). The new legislation introduced major reforms to the law relating to medical treatment decisions, advance care planning, and decision-making at the end of life. We have updated End of Life Law in Australia's web pages about the Victorian law on Advance Directivesand Stopping Treatment to reflect those changes. These pages explore the new laws on areas including:
Advance Care Directives
Stopping Treatment
We have also updated relevant sections relating to the new Victorian laws on the following webpages:
Useful resources about the new laws are available from the Office of the Public Advocate Victoria, and Victoria Health, including:
On 6 March 2018 the Victorian Attorney-General Health Minister introduced the Guardianship and Administration Bill 2018 (Vic) to the Victorian Parliament. The Bill, which has had its second reading speech, proposes amendments to modernise the existing Victorian guardianship regime. Key reforms proposed in the Bill include:
The Victorian Parliament will debate the Bill in coming months.
Following review and consultation, Palliative Care Australia has released updated National Palliative Care Standards (5th edition, 2018)
The Standards set out a vision for appropriate specialist palliative care in Australia by promoting nine core standards to support services to deliver high quality palliative care:
A brief overview and further information about the Standards are available from Palliative Care Australia.
From 16-22 April 2018 is National Advance Care Planning Week, a national week to raise awareness and understanding about advance care planning throughout the community.
This event offers an opportunity to reflect on what's important to you at the end of life, and have a conversation with your family, friends or health professional about your wishes. You can also learn more about what the law says about advance planning and end-of-life treatment by visiting our Advance Directives webpages.
More information about events during the national week is available at National Advance Care Planning Week.
On 12 March 2018 the new Victorian Medical Treatment Planning and Decisions Act 2016 (Vic) will commence operation and replace the Medical Treatment Act 1988 (Vic). The new legislation will introduce major reforms to the law relating to medical treatment decisions, advance care planning, and decision-making at the end of life, including:
It will also promote medical decision-making centred on the values and preferences of patients, rather than a best interests approach of decision-making.
End of Life Law in Australia will updated on 12 March 2018 to reflect the new Victorian laws.
Academics at the Australian Centre for Health Law Research, with academic colleagues, have recently published the following new articles on end of life law:
Law purports to regulate end-of-life care but its role in decision-making by doctors is not clear. This paper, which is part of a three-year study into the role of law in medical practice at the end of life, investigates whether law affects doctors’ decision-making. In particular, it considers whether the fact that the law differs across Australia’s three largest states – New South Wales (NSW), Victoria and Queensland – leads to doctors making different decisions about withholding and withdrawing life-sustaining treatment from adults who lack capacity.
The study involved a cross-sectional postal survey of the seven specialties most likely to be involved in end-of-life care in the acute setting. The sample comprised all medical specialists in emergency medicine, geriatric medicine, intensive care, medical oncology, palliative medicine, renal medicine and respiratory medicine on the AMPCo Direct database in those three Australian states. The survey measured medical specialists’ level of legal compliance, and reasons for their decisions, concerning the withholding or withdrawal of life-sustaining treatment. The response rate was 32% (867/2702). A majority of respondents in each state said that they would provide treatment in a hypothetical scenario, despite an advance directive refusing it: 72% in NSW and Queensland; 63% in Victoria. After applying differences in state law, 72% of Queensland doctors answered in accordance with local law, compared with 37% in Victoria and 28% in NSW (p < 0.001). Doctors reported broadly the same decision-making approach despite differences in local law.
We concluded that law appears to play a limited role in medical decision-making at the end of life with doctors prioritising patient-related clinical and ethical considerations. Different legal frameworks in the three states examined did not lead to different decisions about providing treatment. More education is needed about law and its role in this area, particularly where law is inconsistent with traditional practice.
In most developed countries, competent patients have the legal right to refuse any medical treatment; Advance Care Planning mechanisms extend this right to non-competent patients. However, some groups, including lesbian, gay, bisexual, transgender and intersex (LGBTI) people, risk their wishes not being respected if they lose capacity, more than others. Little is known about medical practitioners’ knowledge of, or attitudes to, the law in this area, especially in relation to LGBTI people, or how the law influences their decision-making. An Australian postal survey explored knowledge and attitudes of medical specialists to legal issues relating to withdrawing/ withholding life-sustaining treatment from adults without capacity. One scenario (the focus of this paper) asked which of four plausible substitute decision-makers, including a same-sex partner, had the legal authority to make such decisions. The overall response rate was 32% (867/2702). Less than one-third of respondents correctly identified the same-sex partner as the legally authorised decision-maker. LGBTI people face multiple obstacles to having their end-of-life wishes respected. Where healthcare providers are also ignorant of the partner’s legal right to make such decisions, the problem is compounded. Improved legal education for clinicians and promotion of educational resources for members of the LGBTI community is needed.
This study aimed to estimate the incidence, duration and cost of futile treatment for end-of-life hospital admissions. It involved a retrospective multicentre cohort study involving a clinical audit of hospital admissions in three Australian public-sector tertiary hospitals. Included in the audit were adult patients who died while admitted to one of the study hospitals over a 6-month period in 2012. The incidence rate of futile treatment in end-of-life admissions was 12.1% across the three study hospitals (range 6.0%–19.6%). For admissions involving futile treatment, the mean length of stay following the onset of futile treatment was 15 days, with 5.25 of these days in the intensive care unit. The cost associated with futile bed days was estimated to be $Australian 12.4 million for the three study hospitals using health system costs, and $A988 000 when using a decision maker’s willingness to pay for bed days. This was extrapolated to an annual national health system cost of $A153.1 million and a decision maker’s willingness to pay of $A12.3 million. The incidence rate and cost of futile treatment in end-of-life admissions varied between hospitals. The overall impact was substantial in terms of both the bed days and cost incurred. An increased awareness of these economic costs may generate support for interventions designed to reduce futile treatments.
Victoria has become the first Australian jurisdiction since the Northern Territory in 1997 to legalise assisted dying. On 29 November 2017, the Victorian Legislative Assembly agreed to amendments made by the Victorian Legislative Council, resulting in the enactment of the Voluntary Assisted Dying Act 2017 (Vic) (‘the Act’). The new laws will likely take effect on 19 June 2019.
The Act establishes a narrow model of physician-assisted dying (not voluntary euthanasia) which permits a patient to be prescribed lethal medication, which they would take themselves. This differs to voluntary euthanasia, which is legal in some countries, such as Belgium and The Netherlands. Voluntary euthanasia occurs where a physician directly administers lethal medication or other treatment to a competent patient, at the request of the patient.
Key provisions of the Act
Eligibility criteria
In order to access VAD, a person must meet strict eligibility criteria, including that the person must:
A person is not eligible to access VAD only because they have a disability, or are diagnosed with a mental illness.
The only exception to the eligibility criteria is if the person is diagnosed with a neurodegenerative disease, illness or medical condition. In that case, a person may access VAD provided that disease, illness or condition is expected to cause death within 12 months. The original Bill proposed that any person expected to die within 12 months could access VAD. The amendment of that period to six months is discussed in a recent article in The Conversation.
A person who is considered ineligible to access VAD because they:
may apply to the Victorian Civil and Administrative Tribunal for a review of the decision.
Requests and assessment
The Act requires the person to make three separate requests for VAD, undergo two independent medical assessments, and make a written, witnessed declaration requesting access to VAD (once s/he has been assessed as eligible for access).
Conscientious objection
A health practitioner with a conscientious objection to VAD has the right to refuse to provide information about VAD to a patient, and to participate in any part of the VAD process (including supplying, prescribing or administering a VAD substance, or being present when a VAD substance is administered).
Administration of VAD
In order to obtain, possess, store, use and self-administer the VAD substance, the person accessing VAD must be issued with a self-administration permit. If the person is physically incapable of self-administering or digesting the substance, a practitioner administration permit must be applied for, permitting the coordinating medical practitioner to administer the substance to the person. The person must then make an administration request to the practitioner in order to be administered the substance.
Safeguards
The legislation contains a range of safeguards, including:
Review
The Act will be reviewed by the Minister in its fifth year of operation.
The Australian Capital Territory's Legislative Assembly is calling for submissions to a Select Committee which will 'review and report on end of life choices in the ACT'. The Terms of Reference require the Committee to inquire into and report on:
The Select Committee will report to the Legislative Assembly by 29 November 2018.
Submissions to the Inquiry are due by COB Friday 23 February 2018. More information about making a submission is available from the ACT Parliament.
The Victorian Legislative Council this afternoon passed the Voluntary Assisted Dying Bill 2017 (the Bill) with amendments, by 22 votes to 18. The Bill will now return to the Legislative Assembly for ratification. Victoria will become the first Australian jurisdiction since the Northern Territory in 1997 to legalise assisted dying.
The Bill was passed by Victoria's Legislative Assembly on 20 October 2017 after a conscience vote (47 votes in favour of the Bill, and 37 votes against). An analysis of the reasons why some Legislative Assembly members voted against the Bill are discussed by ACHLR academics Lindy Willmott, Andrew McGee and Ben White in a recent article in The Conversation.
Last week the New South Wales Voluntary Assisted Dying Bill 2017 was defeated in the Legislative Council by one vote (20 votes to 19). The Bill may be reintroduced in the future. University of Canberra academics Wendy Bonython and Bruce Baer Arnold compared the Victorian and New South Wales models in an article for The Conversation .
The New South Wales Law Reform Commission (NSWLRC) has released draft proposals prior to its final report for its review of the Guardianship Act 1987 (NSW).
The Commission's key draft proposals include:
The NSWLRC is seeking submissions on the draft proposals by 9 February 2018 to inform its final report. For further information about making a submission visit the NSW Law Reform Commission Guardianship Review.
Victoria's historic Voluntary Assisted Dying Bill was passed by the Victorian Legislative Assembly last week, following a lengthy debate and conscience vote. The final count resulted in 47 votes in favour of the Bill and 37 votes against, with a number of MPs crossing the floor during voting.
The Bill will now proceed to the 40-member Upper House (the Victorian Legislative Council), where it is expected to be debated next week. If passed, Victoria will become the first Australian jurisdiction since the Northern Territory in 1997 to legalise assisted dying.
A Voluntary Assisted Dying Bill was also introduced in the New South Wales Parliament in September 2017, and is expected to be debated in November 2017.
Previous attempts to pass assisted dying laws and politics of euthanasia reform in Australia are discussed in a recent article in the University of New South Wales Law Journal.
This week we provide updates on:
Almost 180 delegates from 10 countries attended the 2nd International Conference on End of Life Law, Policy and Practice (ICEL 2017) at Dalhousie University in Canada from 13-15 September, co-hosted by the Dalhousie Health Law Institute; the Australian Centre for Health Law Research; and the International Collaborative for End of Life Care Research, Europe.
The conference brought together researchers, practitioners and community members from a wide range of disciplines across the globe to explore emerging ethical, legal and medical issues that confront people when they die.
The conference featured almost 90 engaging presentations on medical assistance in dying (euthanasia and assisted suicide); withholding and withdrawing potentially life-sustaining treatment (e.g. the “futile treatment” debate, artificial hydration and nutrition); palliative care (including palliative sedation); advance directives and advance care planning; and other end of life law, ethics, policy, and practice issues.
The program feature six plenary presentations with keynote speakers from Australian and international universities. Professor Kenneth Chambaere from the Belgian-based End of Life Care Research Group and colleagues explored palliative care and its relationship with medical aid in dying, while Professor Jocelyn Downie from Dalhousie University, Canada and colleagues presented on palliative sedation. Professors Ben White and Lindy Willmott from ACHLR provided Australian perspectives on the legal status of assisted dying and empirical studies in end-of-life decision-making.
Feedback from the conference has been very positive and participants are keen to see these important discussions continue. A special issue of the Dalhousie Law Journal will be released in 2018 devoted to articles presented at or arising from the conference.
The 3rd International Conference on End of Life Law, Policy and Practice will be hosted in Belgium in 2019.
The Western Australian Parliament is calling for submissions to a Joint Select Committee which will inquire into 'the need for laws in Western Australia to allow citizens to make informed decisions about their own end of life choices'. The Terms of Reference require the Committee to:
The Joint Select Committee will report to both Houses of Parliament by 23 August 2018.
The deadline for submissions is 23 October 2017. More information about making a submission is available from the Western Australian Parliament.
Bills proposing to legalise voluntary assisted dying were introduced in the Victorian and New South Wales Parliaments this week.
The Victorian Bill is likely to be debated when in mid October 2017. Further information about the Bill is detailed in its Explanatory Memorandum. The New South Wales Bill (and Explanatory Memorandum) will also be considered in October 2017. Both Bills will likely be the subject of a conscience vote by Victorian and New South Wales Members of Parliament.
In an article in this week’s The Conversation ACHLR academics explore the role of morals and empirical evidence in the assisted dying debate. The role of parliamentarians in such debates, and how a conscience vote is exercised is also discussed in a Journal of Law and Medicine article on assisted death and voluntary euthanasia.
A new Lancet Oncology article reports on a study undertaken by a taskforce of international end-of-life academics and clinicians to determine a consensus definition for advance care planning (ACP) and recommendations for its application. Currently there is no consensus about a definition of ACP. The researchers consulted 109 end-of-life experts and patient representatives globally (including 11 from Australia), who rated ACP definitions and 41 recommendations relating to ACP. From the feedback they developed the following ACP definitions:
Brief definition
Advance care planning enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate.
Extended definition
Advance care planning enables individuals who have decisional capacity to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and health-care providers. ACP addresses individuals’ concerns across the physical, psychological, social, and spiritual domains. It encourages individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account should they, at some point, be unable to make their own decisions
The definitions and recommendations will be disseminated and implemented for use in practice and policy-making, to enhance ACP policy, research and program development; improve benefits to patients and their quality of life; and ensure patient care is aligned to patients’ goals and preferences.
Proposed legislation to permit voluntary assisted dying (VAD) in Victoria and New South Wales will be considered by the Victorian and New South Wales parliaments next week.
The Guardian this week reported that Victoria’s Voluntary Assisted Dying Bill will likely be considered by the Victorian Legislative Assembly next week, with a debate expected in October, while the Voluntary Assisted Dying Bill 2017 (NSW) will be introduced in the New South Wales Legislative Council on 21 September. The final versions of the Bills have not yet been publically released.
The Victorian Bill is expected to be based on the July 2017 final report of the Ministerial Advisory Panel on Victorian Voluntary Assisted Dying, which outlines 66 recommendations and 68 safeguards for the Victorian VAD framework. The final report proposes that assistance to die would be accessible to Victorians aged 18 years or over with decision-making capacity, who have an incurable disease, illness or medical condition likely to cause death within 12 months, which is causing suffering that cannot be relieved in a manner the person deems tolerable.
The draft NSW Bill (released for public consultation earlier this year) proposes that a person could receive assistance to end their life if he or she is at least 25 years old; residing in New South Wales; has a terminal illness which ‘in reasonable medical judgment’ will result in a patient’s death within 12 months; and experiences severe pain, suffering or physical incapacity to an extent unacceptable to the patient.
Further information about current Australian laws on euthanasia and assisted dying and related publications are available here, including commentary on recent attempts to legalise assisted dying in Australian parliaments.
In recent weeks we have followed the UK case of Charlie Gard, an 11 month old boy with the rare and incurable illness encephalomyopathic mitochondrial DNA depletion syndrome. This case has focused on several legal issues including parental decision-making for a child at the end of life; a child’s best interests; and provision of futile treatment.
Since birth Charlie has been on life support and in intensive care, with virtually no prospect of improvement in his condition. Charlie’s parents wished to transport Charlie to the US to undergo experimental treatment, arguing it was in Charlie’s best interests to receive further treatment. Charlie’s treating hospital argued the proposed treatment would be futile, was not in his best interests, and would extend his pain and suffering. Earlier court orders permitted the hospital to withdraw artificial ventilation so that Charlie could die. Charlie’s parents appealed this decision to various courts, most recently the UK High Court on the basis of new medical evidence.
Earlier this week Charlie’s parents withdrew their appeal, following the results of recent medical tests which indicate no further treatment can assist Charlie. On Monday 24 July Mr Justice Francis of the UK High Court issued a judgment reaffirming his April 2017 declarations that it is in Charlie’s best interests for artificial ventilation to be withdrawn, and palliative care provided.
A subsequent order was made on 27 July for Charlie to be transferred to a hospice where his ventilation will be withdrawn.
Further articles of interest about this case include:
In a recent article in The Conversation, Australian Centre for Health Law Research Directors Professors Ben White and Lindy Willmott provide preliminary analysis and commentary about the final report into Voluntary Assisted Dying legislation for Victoria, and whether these recommendations will become law.
Further information about current Australian laws on euthanasia and assisted dying and related publications are available here.
The Ministerial Advisory Panel on Victorian Voluntary Assisted Dying (VAD) legislation today released its final report outlining 66 recommendations and 68 safeguards 'for the development of safe and compassionate voluntary assisted dying legislation'.
The report follows extensive recent public consultation on proposed VAD legislation, and the 2015-2016 Victorian Parliamentary Committee Inquiry into End of Life Choices. It is understood drafting of the legislation will commence shortly, with a Bill to be introduced in Victorian Parliament in coming months.
This week we provide updates on:
In our 16 June 2017 update we explored the UK case of Charlie Gard, an 11 month old infant with an incurable terminal illness. In June 2017 the British Supreme Court refused to grant permission for Charlie's parents to appeal previous court decisions which permit the hospital treating Charlie to withdraw treatment, and provide palliative care until his natural death. Charlie’s parents disagree that his treatment should be discontinued, and wish to transport Charlie to the United States to receive experimental treatment to improve his condition.
Charlie's parents recently appealed to the European Court of Human Rights ('the European Court'), arguing that the previous decisions breached the European Convention on Human Rights (the Convention) on the following grounds:
In its decision of 27 June 2017, the European Court declared the parents' application inadmissable, and found that the UK courts had complied with the Convention. The decision enables the treating hospital to withdraw treatment, and allow him to die (with palliative care).
However, this week the case returned to the UK High Court following an application by the treating hospital on the basis of the availability of new evidence relating to potential treatment for Charlie. The High Court is continuing to hear further medical evidence. The hearing will resume this weekend.
This month’s special issue of the Journal of Medical Ethics (JME) explores significant legal, ethical, clinical and practical implications of decisions to withdraw clinically assisted nutrition and hydration (CANH) from patients who are in either a persistent vegetative state (PVS) or a minimally conscious state (MCS). The papers in this edition consider challenging questions including:
This week we provide updates on:
This UK case concerns the issues of futile treatment for an infant with a terminal medical condition, and parental rights to demand treatment.
10 month old Charlie Gard was born with the rare condition encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). His condition has progressively deteriorated since birth, and he cannot move his arms or legs or breathe without assistance. His brain function is severely affected and he requires a mechanical ventilator to stay alive.
Though they acknowledge that in his current condition Charlie has no quality of life, his parents asked the treating hospital to keep Charlie alive by artificial means to enable them to take him to the United States to undertake experimental treatment (deoxynucleoside therapy) to improve his condition. They have raised £1.3 million to fund the trip. The therapy has been attempted on animals with the same condition, but not humans.
The hospital wished to discontinue Charlie’s treatment, which would result in his death, to which Charlie’s parents disagreed. The hospital applied to the Family Division of the High Court seeking an order that it is lawful and in Charlie’s best interests for artificial ventilation to be withdrawn and only palliative care provided, and that it is in Charlie’s best interests not to undergo nucleoside therapy.
In his April 2017 judgment, Mr Justice Francis concluded that based on the medical evidence providing the therapy to Charlie would be futile and of no benefit. The legal test applied was whether further treatment would be in Charlie’s best interests, which the judge determined it would not. He ruled that the hospital could lawfully withdraw treatment and provide palliative care.
Charlie’s parents appealed to the Court of Appeal (Civil Division), which, in May 2017, dismissed the appeal and upheld the previous decision.
Charlie’s parents appealed to the Supreme Court, which delivered its judgment on June 8. The Court reaffirmed that parents are unable to insist upon treatment which is not in their child’s best interests, and that Charlie would experience significant harm and suffering if his life is ‘prolonged without any reasonable prospect of improvement’. They also noted the European Court of Human Right’s position that ‘…the child's rights must be the paramount consideration. If there is any conflict between them [and that of the parents] the child's interests must prevail’. The Court concluded the judge applied the correct legal test, and that his findings cannot be challenged on appeal. The Supreme Court refused to grant permission to appeal.
Charlie’s parents have since taken their case to the European Court of Human Rights, which has issued a stay until Monday 19 June requiring Charlie to receive treatment while they consider the case.
For further reading see:
The provisional plenary program and concurrent session program are now available for the 2nd International Conference on End of Life: Law, Ethics, Policy and Practice (ICEL 2017) from 13 - 15 September 2017 in Halifax, Nova Scotia, Canada.
The plenary program features international leaders in the end-of-life field including: Jocelyn Downie (Professor of Law, Dalhousie University); Luc Deliens and Kenneth Chambaere (End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Belgium; Joseph Arvay (Counsel in the landmark Canadian physician-assisted dying case Carter v Carter); Emily Jackson (Professor of Law; London School of Economics and Political Science); Linda Ganzini (Professor of Psychiatry and Medicine at Oregon Health & Science University; Ben White and Lindy Willmott (Directors, Australian Centre for Health Law Research, QUT); Agnes van der Heide (Erasmus MC, University Medical Center Rotterdam, the Netherlands), and Bregje Onwuteaka-Philipsen (Professor, VU University Medical Center, the Netherlands).
Presenters will explore contemporary end-of-life issues and challenges relating to medical assistance in dying (euthanasia and assisted suicide); withholding and withdrawing potentially life-sustaining treatment (e.g. the “futile treatment” debate, artificial hydration and nutrition); palliative care (including palliative sedation); advance directives and advance care planning; next generation issues (e.g. medical assistance in dying in prisons, organ donation) and other end of life law, ethics, policy, and practice issues.
ICEL2017 is co-hosted by the Dalhousie Health Law Institute, Dalhousie University, Canada, the Australian Centre for Health Law Research, and the International Collaborative for End of Life Care Research, Europe. To register please visit the conference website. For conference updates and further information contact icel2@dal.ca
This week we provide updates on:
The Tasmanian House of Assembly this week defeated the Voluntary Assisted Dying Bill 2016 ('the Bill') in a conscience vote (16 votes to 8). The Bill sought to legalise assisted dying for competent adults in the advanced stages of a serious incurable and irreversible medical condition (causing persistent, intolerable suffering), by way of lethal medication (either self-administered, or administered by the adult's primary doctor).
The defeated Bill was the third attempt to legalise assisted dying in Tasmania in the last decade.
An interim report on Voluntary Assisted Dying legislation for Victoria has been released. The report, produced by a Victorian Ministerial Advisory Panel, explores the key issues raised by stakeholders in a recent public consultation on proposed legislation to legalise assisted dying in Victoria. Feedback from the consultation will be used by the Panel to develop a final report with recommendations, to be released in July 2017.
In this presentation, Australian Centre for Health Law Research Directors Professors Ben White and Lindy Willmott will explore whether the Australian community knows about end-of-life law, and whether people use the law when making decisions about medical treatment. Their presentation will draw on the preliminary findings of a three-year Australian Research Council funded study which includes a review of online resources and a telephone survey of the community in Queensland, New South Wales and Victoria.
This is event is hosted by the Queensland Health Ethics and Law group .
Date: Tuesday 13 June 2017
Venue: Gibson Room, level 10, Z Block, QUT Gardens Point Campus, Brisbane.
Time: 6:30 - 8pm with refreshments from 6pm.
Entry is free and no RSVP is required.
This week we provide updates on:
By Ben White and Lindy Willmott, Directors, Australian Centre for Health Law Research
From 21-28 May 2017 is National Palliative Care week, a national week to raise awareness and understanding about palliative care throughout the community. This event offers an opportunity to reflect on how patients’ experiences at the end of life can be improved. While we are fortunate in Australia to have one of the highest-quality palliative care systems in the world, Australians still aren’t very good at planning for their end-of-life care. This includes talking and knowing about what the law says about advance care planning and end-of-life treatment.
Knowing the law at end of life is critical to support patient and family participation in decision-making. Law also provides the framework that recognises these decisions, for example, through making an advance directives or appointing an enduring power of attorney or guardian. Not knowing the law can put patients at risk, and result in medical treatment that is not wanted.
To further address these issues, academics at the Australian Centre for Health Law Research, with colleagues at the University of Queensland and the Cancer Councils of Victoria, Queensland and New South Wales, are currently undertaking a study which looks at whether patients and the broader community know the law and are aware of their legal rights and responsibilities at end of life.
As part of this study, the researchers reviewed existing online resources that patients, families or members of the community could access to learn more about the law of end-of-life decision-making. While there were some valuable resources available, there were also gaps in the information available. Further, some of the search terms members of the public are likely to use did not reach the websites that have the information they wanted.
The study on community knowledge of the law in this area includes interviewing terminally ill patients about their experiences in participating in end-of-life decision-making. The researchers are also interviewing family members who have been involved in medical decision-making for loved ones. Through this research, it is hoped to improve end-of-life decision-making and ensure that people can participate fully in these decisions. Those interested in participating in this research can contact Michele Ferguson (michele.ferguson@qut.edu.au or 07 3365 2505). The researchers are especially interested in speaking with people based in New South Wales and Victoria.
A consultation draft of the Voluntary Assisted Dying Bill 2017 (NSW) (‘the Bill’) has been released for public consultation by the New South Wales Parliamentary Working Group on Assisted Dying.
The Bill establishes a framework for physician-assisted dying, whereby people with a terminal illness can receive assistance from a medical practitioners to end their lives. To be eligible a patient must:
To receive assistance, eligible patients must be assessed by both a primary medical practitioner and secondary medical practitioner (who is a specialist), as well as an independent psychiatrist or psychologist, to confirm the patient has decision-making capacity, is of sound mind, and is making the decision freely and voluntarily.
Other key features of the Bill include:
The Bill is open for public consultation, with submissions due by Monday 17 July 2017. For further information or to make a submission contact voluntaryassisteddying@parliament.nsw.gov.au.
In a new article in the Medical Journal of Australia, Warren et al discuss the valuable role advance care directives can have for Indigenous Australians. They note advance directives are particularly important for the Indigenous population given the high rates of life-limiting conditions and disability they experience towards the end of life, and as a means of enabling Indigenous people to maintain their strong connection to land, family and community by dying at home. The authors explore the reasons why advance care planning is not commonly undertaken by Indigenous Australians, and strategies to improve uptake of advance care planning.
This week we provide updates on:
The Australian Centre for Heath Law Research has developed two new brochures for patients, families and the community, and health professionals, providing an overview of the End of Life Law in Australia website, and how it can support the community to know and better understand the law at end of life.
The brochures can be downloaded from the About this website page. To request hard copies, please contact achlr@qut.edu.au
In a new article for the Alberta Law Review, Professor Jocelyn Downie (Dalhousie Heath Law Institute, Dalhousie University, Canada; Adjunct Professor, Australian Centre for Heath Law Research) and Professors Lindy Willmott and Ben White (Australian Centre for Heath Law Research, Queensland University of Technology) explore the current practice of unilateral withholding and withdrawal of potentially life-sustaining treatment in the United Kingdom, Australia, New Zealand, the United States and Canada.
Using Canada as a case study, they propose a model for reform of law and policy shaped by the fundamental values of Canadian society: life, autonomy, equality, rule of law, distributive justice, procedural fairness, access to justice, conscience and humility.
The Victorian Department of Health and Human Services recently concluded its public consultation seeking feedback on a voluntary assisted dying framework for Victoria.
The proposed framework would legalise physician-assisted dying in Victoria for adults with decision-making capacity, who are suffering from a serious and incurable condition, and are at the end of their life, provided they meet the proposed criteria. The framework is based on the recommendations of the Victorian Parliament Legislative Council Legal and Social Issues Committee from its 2016 final report arising from the End of Life Choices Inquiry.
The consultation follows the Victorian Government's appointment of a Ministerial Advisory Panel to develop assisted dying legislation, for introduction into Parliament in 2017. The Panel will issue an interim report in April 2017, and a final report in July 2017.
If legislation is introduced, Victoria will become the first Australia jurisdiction since the Northern Territory in 1997 to legalise assisted dying.
This week we provide updates on:
The New South Wales Law Reform Commission has released three new Question Papers as part of its review of the Guardianship Act 1987(NSW).
Question Paper 4 considers the safeguards and procedures that should be in the guardianship system.
Question Paper 5 considers the consent requirements for medical and dental treatment, and the use of restrictive practices.
Question Paper 6 considers the remaining issues that Question Papers 1-5 did not cover.
Submissions on Question Papers 4 - 6 close Friday 12 May 2017.
Previous Question Papers explored the preconditions to alternative decision-making arrangements, decision-making models, and the role of guardians and financial managers. Submissions on those papers have now closed.
For further information about the review and its Terms of Reference, visit the NSW Law Reform Commission.
This week we provide updates on:
The Australian Medical Association Queensland (AMAQ) has released Part 5 of their Health Vision, which focuses on Care at the End of Life. It calls for Queensland to become a national leader in end-of-life care, and to ensure planning is undertaken early to enable future patient demand for palliative care to be met.
In addition to noting the need for greater funding for palliative care training and services, AMAQ has identified key steps it considers should be implemented to improve end-of-life care:
The AMAQ also urges the Queensland Government to achieve two targets by 2022:
In a recent article for The Conversation, Australian Centre for Health Law Research academic Dr Andrew McGee explored the issue of euthanasia and assisted suicide rates in countries where the practices are legal.
Dr McGee concluded ‘what is clear is that euthanasia is by no means a leading cause of death in countries where it is legal’, with research from various sources indicating the rates account for between 0.3% and 4.6% of all deaths in those jurisdictions.
This week we provide updates on:
The Australian Commission on Safety and Quality in Health Care (ACSQHC) has released its National consensus statement on essential elements for safe and high-quality paediatric end-of-life care, to guide clinicians and others about recommended practices and essential elements for safe, high-quality end-of-life care for children in acute settings.
The paediatric Consensus Statement, adapted from the ACSQHC's National Consensus Statement on Essential elements for safe, high quality end of life care for adults, recognises that there are additional considerations, principles and actions required to provide optimal care to children at the end-of-life.
The Australian Government has announced the establishment of an Australian Advisory Council on the Medicinal Use of Cannabis. The Council, to be chaired by Professor James Angus AO, will provide expert advice to the Government on
The Government has also this week announced it will enhance local supply of medicinal cannabis and relax importation laws to enable patients to access the medication faster. The changes will enable importation of medicinal cannabis products by approved providers from overseas until local production is able to meet demand.
This week we provide updates on:
The Dalhousie Health Law Institute, the Australian Centre for Health Law Research and the International Collaborative for End of Life Care Research warmly invite you to attend the 2nd International Conference on End of Life: Law, Ethics, Policy and Practice (ICEL 2017) from 13 – 15 September 2017 in Halifax, Nova Scotia, Canada.
This is a multidisciplinary, multinational conference, with presenting disciplines including, but not limited to, law, medicine, nursing, philosophy and bioethics, and representation spanning health and legal practitioners, academics, NGOs, and regulators and policy-makers.
To register and view the conference program please visit the conference website .
The call for abstracts is now open and will close on 15 February 2017. Abstracts are particularly welcomed within the following streams:
For conference updates and further information please visit http://icel2halifax.ca/ or contact icel2@dal.ca
France has introduced new ‘opt out’ organ donation laws, whereby it is presumed individuals have consented to organ and tissue donation unless they elect to opt out. Previously, medical professionals in France were guided by the deceased person’s wishes for or against donation, or relied on the decision of the deceased’s next of kin. Under the new laws, which took effect on 1 January 2017, those who wish to ‘opt out’ of donation must either join a national ‘refusal’ register or communicate their refusal, in writing or orally, to their next of kin.
France joins countries including Spain, Austria, Belgium, Singapore, Croatia, and Greece in introducing an opt out organ donation system. Australia has an ‘opt in’, informed consent model of donation, whereby an individual with decision-making capacity can provide informed consent (or register an objection) to donation on the Australian Organ Donor Register.
NSW Health has a released a discussion paper inviting submissions on the use of ante mortem (before death) interventions for organ donation. In NSW consent for organ donation after a person’s death is usually provided by:
Prior to death an individual is able to consent to receiving treatments (ante mortem interventions) to improve the function of their donated organs, for the benefit of the person who will receive the organs. The discussion paper is seeking views on the use of ante mortem interventions, consent to interventions where an individual lacks capacity (by allowing the person’s next of kin to act as a substitute decision-maker), and potential safeguards. Submissions are due Monday 30 January 2017.
This week we provide updates on:
The Victorian Government has released its formal response to the June 2016 final report from the Victorian Parliament Legal and Social Issues Committee’s (the Committee) Inquiry into End of Life Choices.
The Government’s response addresses the Committee’s 49 recommendations for improvements to advance care planning, palliative care, and end of life law, policy and practice in Victoria. The following is a synopsis of the Government’s response to some of the Committee’s key recommendations.
Advance care planning and end of life choices
The Victorian Government supports the Committee's recommendations for:
Reforms to existing legislation relating to end of life care and treatment
The Victorian Government supported standardising the definition of ‘medical treatment’ across Victorian legislation, and enacting new legislation which would:
These recommendations have already been addressed through the recent introduction of the Medical Treatment Planning and Decisions Act 2016(Vic).
Palliative care and palliative sedation
The Government supports the development of strategies to better integrate and improve access to palliative care services. It noted that many have already been addressed through the End of Life and Palliative Care Framework.
It supports in part recommendations to establish a taskforce to create appropriate guidelines for the administration of continuous palliative sedation (CPS), to address the current absence of data on that practice. It proposes that the Australian and New Zealand Society of Palliative Medicine review guidelines for sedation, which would be considered for implementation support.
The Government rejects the Committee's recommendation for reporting of cases of CPS to the Department of Health (for data collection and other reporting purposes), due to concerns about possible unintended consequences of monitoring, and the potential for more conservative use of medications that are used to manage symptoms but also cause sedation.
Legislation relating to the doctrine of double effect, withholding and withdrawing futile treatment and assisted dying
The Government is still reviewing the Committee’s recommendations that it enact legislation relating to:
However, it notes the Inquiry report ‘… clearly identifies doctors’ lack of knowledge about the law in relation to end of life care and the impact it may be having on patient care’ and proposes to address this ‘… through a targeted information campaign for health practitioners’.
It is also reviewing the Committee’s proposal to introduce a legal framework and legislation which provides for assisted dying. However, the Victorian Premier recently announced the Government will introduce assisted dying legislation in the Victorian Parliament in the second half of 2017, and that it will be put to a conscience vote. A public discussion paper and targeted stakeholder consultation is planned for early 2017.
The Australian Healthcare & Hospitals Association (the AHHA) has released a new position statement on End of Life Care.
The position statement notes that end of life care should preserve dignity and relieve suffering, be accessible, enable individuals to choose where to die, provide ongoing information to individuals and families to enable informed choices about end of life care options, and be provided be health professionals trained to deliver high-quality, appropriate care.
In the position statement the AHHA also calls for:
The AHHA has also released an issues brief, through its Deeble Institute for Health Policy and Research, on Improving end-of-life care in Australia. The issues brief seeks to raise awareness end of life care issues, provides recommendations for improving end of life care and care services, and recommends how discussion of end of life issues can be generated among health consumers and across the health system.
This week we provide updates on:
The Victorian Government announced last week that it will introduce assisted dying legislation to parliament in the second half of 2017. The proposed laws have not yet been drafted, but if the recommendations of a Victorian Parliamentary Committee are followed it will likely be a narrow, physician-assisted dying model of voluntary euthanasia whereby:
The proposed laws will be drafted over the next 6 months by a ministerial advisory panel comprising clinical, legal, consumer, health administrator and palliative care experts. Once the Bill is introduced in the Victorian Parliament it will be put to a conscience vote.
The Tasmanian Parliament will also consider legalising voluntary euthanasia, following the introduction of the Voluntary Assisted Dying Bill 2016 in November. It proposes a model whereby:
The Bill will likely be debated in 2017.
The Medical Treatment Planning and Decisions Act 2016 (the Act) was assented to by the Victorian Parliament on 29 November 2016. The Act will:
It also promotes medical decision-making centred on the values and preferences of patients, rather than a best interests approach of decision-making.
The Act will commence operation on 12 March 2018, to allow a preparation and implementation period.
The reforms arise from the Victorian Legislative Council Legal and Social Issues Committee’s End of Life Choices Inquiry in 2015 and its final report, and a recent consultation on the draft Bill undertaken by the Victorian Department of Health & Human Services.
The law at end of life can be complex and challenging, not only for patients and their families, lawyers and the broader community, but also medical professionals. In a new article published in the Journal of Law and Medicine ((2016), vol 24(2), pp 342-355) Professors Lindy Willmott and Ben White (Australian Centre for Health Law Research, QUT) and colleagues from Southern Cross University and the University of Queensland explore doctors' attitudes to the role of law in medical practice at end of life. They argue that education can support doctors to reconceptualise their knowledge of the law as constituting an integral component of their clinical practice.
The Australian Medical Association (AMA) has released a new Position Statement on Euthanasia and Physician Assisted Suicide. The Position Statement clarifies the AMA’s position that ‘doctors should not be involved in interventions that have as their primary intention the ending of a person’s life’. It also ‘acknowledges there are divergent views within the medical profession and community relating to euthanasia and physician assisted suicide’, and that laws on these issues are ‘...ultimately a matter for society and government’.
The position statement also:
In October 2016 Queensland became the second Australian state, following Victoria, to introduce stand-alone legislation regulating access to medicinal cannabis (cannabis used for medicinal purposes, to cure or relieve the symptoms of medical conditions).
Under both the Victorian and Queensland laws, patients with terminal conditions such as cancer and HIV may be able to legally access medicinal cannabis to relieve pain and some side-effects of cancer treatment, such as severe nausea, vomiting or wasting. The legislative reforms follow the Victorian Law Reform Commission’s 2015 Inquiry and Report which recommended that legislation be introduced to permit the manufacture, prescription, supply and use of medicinal cannabis to treat people in ‘exceptional circumstances’.
The Public Health Medicinal Cannabis Act 2016 (Qld), which will commence on 1 March 2017, will enable medicinal cannabis to be prescribed by:
The Queensland legislation does not set out a list of eligible medical conditions which can be treated with medicinal cannabis. The Queensland Health website notes that medicinal cannabis approval will be granted only where:
Approval is required by both Queensland Health and the Therapeutic Goods Administration before medicinal cannabis can be prescribed by an approved doctor, and supplied by an approved pharmacist.
The Access to Medicinal Cannabis Act 2016 (Vic), introduced in April 2016, creates a different regulatory framework which allows specialist medical practitioners to authorise access to medicinal cannabis to specific eligible patients. Eligible patients are currently children under 18 with severe seizures resulting from epilepsy (where other treatments are not effective or have intolerable side effects), and those with a prescribed medical condition. To date the Victorian Parliament has not prescribed other eligible patient groups who may access medicinal cannabis, but is able to do so in the future. The Act also established an Office of Medicinal Cannabis to oversee the inclusion of prescribed medical conditions in accordance with emerging research evidence.
Some other Australian jurisdictions have also amended existing legislation, or initiated other schemes to permit use of medicinal cannabis in particular circumstances:
The Australian Government has also introduced reforms to the Narcotic Drugs Act 1967 (Cth) to enable cultivation and manufacture of medicinal cannabis, and to ensure Australia’s compliance with the Single Convention on Narcotic Drugs. The reforms create a national licensing scheme for the controlled cultivation and manufacture of cannabis for medicinal or scientific purposes.
For further information about medicinal cannabis law reform and regulation, see Ian Freckelton, “Medicinal cannabis law reform in Australia” (2016) 23 Journal of Law and Medicine497, or visit the Therapeutic Goods Administration.
The South Australian Death with Dignity Bill, which sought to legalise voluntary euthanasia for adults with terminal medical conditions, was defeated following a conscience vote (24 votes against and 23 votes for) in the South Australian House of Assembly on 16 November 2016.
A new bill legalising voluntary euthanasia was introduced into the South Australian Parliament on 20 October 2016. The Death with Dignity Bill 2016 (SA) (the Bill) permits a person to request voluntary euthanasia if they meet the following eligibility criteria:
A terminal medical condition means an incurable medical condition (excluding mental health conditions) that will cause the person’s death, either directly or as a result of related medical consequences.
The Bill provides safeguards including:
The Bill enables medical practitioners, nurses and nurse practitioners to decline to administer, or assist in administering, the voluntary euthanasia on any grounds, without prejudice to their employment or discrimination. The administering authority of institutions including hospitals, hospices, nursing homes or other institutions caring for sick people may also refuse to allow voluntary euthanasia within the institution, and must ensure persons entering or being admitted to the institution are aware of that.
The Bill is one of many legislative attempts to legalise voluntary euthanasia in South Australia in the past two decades. It is scheduled to be debated by the South Australian House of Assembly in early November 2016.
Jocelyn Downie, SJD, FRSC, FCAHS, Adjunct Professor, QUT Faculty of Law, University Research Professor, Faculties of Law and Medicine, Dalhousie University
After a long and oftentimes difficult journey, Canada recently joined the growing number of countries and states that permit medical assistance in dying (MAiD).
In February 2015, the Supreme Court of Canada ruled in Carter v. Canada (Attorney General) that the federal Criminal Code prohibitions on physician-assisted dying violate the Canadian Charter of Rights and Freedoms because they limit the right to equality and limit the right not be deprived of the right to life, liberty, and security of the person except in accordance with the principles of fundamental justice. They declared that the Criminal Code prohibitions are void insofar as they prohibit physician-assisted dying for “a competent adult person who (1) clearly consents to the termination of life; and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.” The Supreme Court suspended the coming into effect of their ruling for twelve months to give the federal government time to put into place a regulatory framework for MAiD (this was later extended by 4 months because of a change in government).
On June 17th, 2016 the new federal legislation was passed and came into force. MAiD is defined as: “(a) the administering by a medical practitioner or nurse practitioner of a substance to a person, at their request, that causes their death; or (b) the prescribing or providing by a medical practitioner or nurse practitioner of a substance to a person, at their request, so that they may self-administer the substance and in doing so cause their own death.” It thus includes both voluntary euthanasia and assisted suicide.
MAiD is permitted for patients who meet the following eligibility criteria:
A person is considered to have a grievous and irremediable medical condition if:
Key procedural safeguards include:
While the new legislation represents a monumental shift in end of life law in Canada, not surprisingly, there remain some outstanding issues that Canadians must wrestle with over the coming months and years.
First, what is to be done when a health care provider or publicly-funded institution objects to MAiD? Can a physician faced with a request for MAiD simply decline to provide the patient with any information or with a referral to a willing provider? Can a publicly-funded institution decline to allow the provision of MAiD within its walls and leave patients with no access to MAiD or access only through a transfer to another institution? There are already reports surfacing of individuals being unable to access willing providers and fragile patients being transferred between institutions.
Second, should access to MAiD be permitted for mature minors (individuals under the age of majority who nonetheless have decision-making capacity)? Should individuals whose sole underlying medical condition is a mental illness have access to MAiD? Should it be possible for individuals to request MAiD in advance of loss of capacity (e.g., upon receipt of a diagnosis of Alzheimer’s Disease)? The government is required by the new legislation to initiate independent reviews of these three issues and report back to Parliament within two years.
Third, have provisions in the new legislation created unforeseen and unconscionable consequences? Consider the following situations based on cases that have already arisen in Canada. A patient is suffering from spinal stenosis causing excruciating pain. His pain medications must be reduced in order to bring him back to a state of decision-making capacity – but also into a state of intolerable pain – so that he can be capable of reconfirming his request at the time of provision of MAiD. A patient is suffering from the long-term effects of a blood clot near his brain stem. His suffering is enduring and intolerable but his death is not reasonably foreseeable. He decides to forego eating and drinking in order to get close enough to death to qualify for MAiD. He goes without food for 53 days and water for 8 days before he is judged to be close enough to death to qualify.
Finally, is the new legislation compliant with the Canadian Charter of Rights and Freedoms? Within weeks of the passage of the new legislation, a Charter challenge to the restrictive definition of grievous and irremediable condition was launched. The plaintiffs have claimed that, contrary to the Supreme Court of Canada’s decision in Carter v. Canada (Attorney General), the right to equality and the right not to be deprived of the right to life, liberty, and security of the person except in accordance with the principles of fundamental justice are limited by the restriction of access to MAiD to those whose conditions are “incurable,” who are in a state of “irreversible decline in capability,” and whose “natural death” is “reasonably foreseeable.”
As many Australian jurisdictions contemplate decriminalising MAiD, it is worth reflecting on recent developments in Canada. Come to the Annual Public Lecture at the Australian Centre for Health Law Research at QUT on October 19 to hear more about the Canadian experience and discuss some of the lessons learned.
For more information about end of life law and policy in Canada, see http://eol.law.dal.ca/
For more information about end of life law and policy in Australia, see https://end-of-life.qut.edu.au/
Last week saw the 20th anniversary of the death of Bob Dent, the first person (and one of only four people) to die in Australia under the Northern Territory's former voluntary euthanasia laws. In marking this anniversary, The Australian reported last Friday on the continued progress of law reform efforts, including in South Australia where the parliament is expected to debate a voluntary euthanasia Bill shortly, and in Victoria, where the Victorian cabinet recently considered the introduction of similar laws.
Australia has a lengthy history of failed attempts to legalise voluntary euthanasia and assisted dying. These are discussed and explored more fully by Australian Centre for Health Law Research academics in a recent University of New South Wales Law Journal article (Failed) voluntary euthanasia law reform in Australia: two decades of trends, models and politics.
On 13 September 2016 the Victorian Minister for Health introduced the Medical Treatment Planning and Decisions Bill 2016 into the Victorian Parliament. If passed, the Bill will:
This Bill does not legalise physician-assisted dying. The Explanatory Memorandum to the Bill provides further information about the Bill.
The introduction of the Bill follows recommendations for law reform made by the Victorian Legislative Council Legal and Social Issues Committee in its 2016 End of Life Choices Inquiry final report, and a recent consultation on the draft Bill undertaken by the Victorian Department of Health & Human Services.
More information about the current law in Victoria relating to advance care directives and stopping treatment is available on this website.
On 24 May 2016 the Northern Territory legislature passed the Guardianship of Adults Act(NT) which reforms the Territory’s adult guardianship system. We have updated the Northern Territory Advance Directives and Stopping Treatment webpages on End of Life Law in Australia to reflect these changes.
The new Guardianship of Adults Act, effective from 29 July 2016:
These reforms also amend the Advance Personal Planning Act 2013, effective from 29 July 2016.
For further information visit the Northern Territory Department of Health.
Belgium’s federal euthanasia commission has announced the death of the first minor to be assisted to die under Belgian’s voluntary euthanasia laws. Belgium legalised euthanasia in 2002 and amended the laws in 2014 to permit children under 18 access to euthanasia.
This case concerns a number of issues relevant to end of life law, including capacity to refuse medical treatment, duress or undue influence in the decision-making process, and the application of the Court’s parens patriae jurisdiction.
Fay, a 19 year old indigenous woman with intellectual disability, was 22 weeks pregnant and diagnosed with pre-eclampsia and chronic renal impairment during pregnancy. The treating doctors recommended termination of the pregnancy to allow effective treatment and avoid substantial risk to her health, including permanent cerebral damage and possibly death if the pregnancy continued. If they treated Fay the foetus, which has been progressing normally, would not survive at birth. Fay refused the termination and wished to continue her pregnancy. The New South Wales Civil and Administrative Tribunal found she had capacity to refuse the termination, and the local hospital district appealed to the NSW Supreme Court.
The key issue for the Court was whether Fay had capacity to refuse the termination,and, if not, whether the Court should allow it to occur.
The Court heard evidence that the prospects of the foetus reaching viability without serious health risks to Fay were very small. In psychiatric interviews, Fay did not engage in discussion and became tearful. Her mother spoke on her behalf and expressed vehement opposition to the termination, a view she attributed to Fay. The psychiatrist concluded that Fay did not have capacity to refuse or consent to treatment, and that her apparent refusal may be under the influence of her mother.
At a bedside hearing, Fay was uncommunicative and distressed. The judge inferred from this that Fay did not understand the matter being discussed. He also formed that view that she was unable to resist the well-meaning but misguided influence of her mother. He concluded that she did not have capacity to refuse the treatment and granted an order pursuant to the Court’s parens patriae jurisdiction enabling the medical practitioners to lawfully perform the termination.
This case involved a dispute between doctors and parents about medical treatment for K, a 6 year old child. In 2015 K was diagnosed with a brain tumour and underwent surgery. Following the surgery K’s doctors recommended he receive chemotherapy and radiation treatment. There was a risk of significant side effects from the radiotherapy including hearing loss, stroke, long-term hormone deficiencies, visual impairments including legal blindness, and ‘depression of intellect’. K’s parents preferred alternative and natural treatments, and palliative care, and objected to the proposed treatment. There was a delay in commencing treatment due to ongoing disagreement between K’s parents and doctors.
The parents and the medical team were unable to reach agreement on the treatment regime. By March 2016 K’s disease had progressed. At that time K's doctors estimated that if treatment were provided he would have a 50 to 60 percent chance of survival 5 years post-surgery. K’s parents continued to oppose treatment, and as a result the treating hospital applied to the Family Court for a determination.
In March 2016 the Court ordered that K receive chemotherapy, despite K’s parents’ objections. Chemotherapy alone was less likely to achieve a cure, but avoided the side effects associated with radiotherapy. The Court did not make an order about radiotherapy, and at that stage it was not possible to offer the treatment due to the delay. It was left open to the parties to decide the issue, or to return to the Court at a later date for an order about radiotherapy.
K received chemotherapy which was partially successful, but not sufficient to cure him. To have the best chance of survival, K’s doctors recommended high-level radiotherapy as well as chemotherapy. In May 2016, K’s independent lawyer applied to the Court to consider the issue of radiotherapy. During the next court hearing the parents and medical team both agreed to continued chemotherapy. The parents remained opposed to radiation therapy due the potential long term side-effects. The court adjourned proceedings without making any further orders.
In July 2016, K was responding to the chemotherapy treatment and the medical team presented two options for further treatment, involving continued chemotherapy and radiotherapy at a lower dosage. The parents did not agree to either option, preferring he commence palliative care.
In August 2016, the medical team again sought orders from the Court. Medical evidence indicated that chemotherapy alone offered almost no prospect of a cure. A combination of chemotherapy and radiotherapy treatment would provide k with the best chance of cure, but the chances of success were much lower than they had been given the delay in providing the radiotherapy.
The Court decided that receiving palliative care rather than treatment was in K’s best interests. In making this decision, the Court gave considerable weight to K’s parent’s views, the medical evidence and the now greatly reduced prospect of a cure for K even if he received chemotherapy and radiotherapy.
The Australian Centre for Health Law Research is delighted to announce leading international end of life scholar Professor Jocelyn Downie, Dalhousie Health Law Institute, Dalhousie University, Canada will present ACHLR's annual public lecture for 2016.
We invite you to join us for this special event, where Professor Downie will present on the legalization of medical assistance in dying - lessons from Canada. This lecture will explore the significant recent assisted dying law reforms in Canada, the journey to reform, and issues for the future. Professor Downie will also reflect on lessons that Australians might take from the Canadian experience as they contemplate moving along the path to allow assisted dying.
Join us for this free event by RSVP'ing to achlr@qut.edu.au by Thursday 13 October 2016 or registering on Eventbrite (registrations will open on Eventbrite on 6 September 2016).
Date: Wednesday 19 October 2016
When: 5:30pm canapes and beverages followed by a 6:00 - 7:30pm lecture.
Where: Gardens Theatre Foyer, X Block, QUT Gardens Point Campus, 2 George Street, Brisbane.
In a new article on MJA Insight, End of Life Law in Australia authors Ben White, Lindy Willmott and Penny Neller discuss why accurate knowledge of the law at end of life is important for doctors and patients, and how this website can assist.
End of Life Law In Australia website authors Professors Ben White and Lindy Willmott and colleagues recently published a new article about the role of law in decisions by doctors to withhold or withdraw life-sustaining treatment from adults who lack capacity. Read more at the Journal of Medical Ethics.
They also discuss this issue and explore whether doctors who know the law more likely to follow it on the JME Blog.
The Tasmanian Parliamentary Inquiry into Palliative Care held public hearings from 8 - 10 August. The Inquiry is considering issues including care for palliative patients, advance care directives, administration of medical treatments to minors, and the administration of emergency medical treatment. The Committee is expected to report by the end of 2016.
Consultation is now open on the draft National consensus statement: Essential elements for safe and high-quality paediatric end-of-life carebeing developed by the Australian Commission on Safety and Quality in Health Care. The purpose of the National consensus statement is to provide high-level guidance about the principles and actions that should shape the provision of safe and high-quality paediatric end-of-life care in acute hospitals, and guidance for health services developing their own systems for delivering safe, timely and high-quality paediatric end-of-life care. Submissions close on 26 August 2016.
We are delighted to announce that the 2nd International Conference on End of Life: Law, Ethics, Policy and Practice (ICEL 2017) will be held at Dalhousie University, Halifax, Nova Scotia, Canada from 13 – 15 September 2017. This event will be co-hosted by the Dalhousie Health Law Institute, Dalhousie University, Canada; the Australian Centre for Health Law Research, Queensland University of Technology, Australia; the End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Belgium; the VU Medical Center, Amsterdam; Erasmus University, The Netherlands, and the Julius Center for Health Sciences and Primary Care, Utrecht University, The Netherlands. Calls for abstracts and conference updates will be available on the conference website, coming soon. Read more at the Dalhousie Health Law Institute.
How can treatment that may prolong or increase patient suffering, waste scarce health care resources, and cause distress to health care workers still occur in hospitals around the world? In these days of overworked doctors and underfunded healthcare systems, how is this still an issue? Professors Lindy Willmott and Ben White, Australian Centre for Health Law Research, explore these issues and the challenges of futile treatment on the Journal of Medical Ethics Blog.
More hospitals are opting in to California’s End of Life Option Act, which allows doctors to assist competent terminally ill patients in ending their lives. The Board of Huntington Hospital in Pasadena has voted to participate, against the recommendation of doctors on staff. Individual doctors are still free to decide whether or not to participate. Read more at the University of California’s Consortium on Law, Science, and Health Policy.
A study in JAMA Oncology, ‘Determinants of Patient-Oncologist Prognostic Discordance in Advanced Cancer,’ investigated discordance between cancer patients’ and oncologists’ survival expectations. 68% of patients differed from their oncologist in their understanding of their prognosis. Of those patients, 89% did not realise their oncologist held a different view, and 96% of them were more optimistic in their prognosis than their oncologist. Not recognising differences of opinion regarding prognosis has ramifications for shared decision making and informed consent .
This case was an appeal against a declaration of the UK High Court of Justice (Family Division) in June 2016 that the respiratory support of A, a critically injured 2 year old boy, be removed. Such removal would result in A’s death.
In November 2015 A was involved in a traffic accident and suffered severe injuries including a spinal cord injury and a hypoxic brain injury. As a result A became a tetraplegic, could not feel anything below the neck, could no longer see, and lost his functional hearing. He was unresponsive and minimally conscious. A’s mother believed he was responsive to music and her voice, though A’s doctors disagreed.
Due to the extent of A’s injuries, the treating medical team discussed with A’s family withdrawal of life sustaining treatment to alleviate his pain and suffering. A's father agreed to this course, but A's mother did not, and desired continuation of intensive care. The St George's University NHS Foundation Trust sought and received a declaration from the High Court of Justice to withdraw treatment.
Medical opinion was that A was unresponsive and unaware. Improvements in brain function may occur but would be modest and not likely to be meaningful. In the meantime, continued treatment would prolong suffering. Each of the doctors giving evidence, as well as the children’s guardian, believed that A’s best interests could only be served by discontinuing life-sustaining treatment.
A’s mother appealed to the Court of Appeal arguing that the High Court of Justice was wrong in finding that A was in pain, and gave insufficient weight to the prospect of improvement, and to the obligation to protect his life.
The Court of Appeal reiterated established UK law regarding the withdrawal of life-sustaining treatment and stated that decisions must be guided by the best interests of the patient at the particular time, considering welfare in the widest sense (Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591); and that decisions are reached objectively and through the balancing of a range of best interest considerations (Re: NHS Trust v MB and Others [2006] EWHC 507 (Fam); [2006] 2 FLR 319 per Holman J).
The Court of Appeal concluded that the original decision was based on a correct application of that law, involving a careful balancing of all those considerations, and dismissed the appeal.
Hosted by Communify Queensland at 6pm on 16 August 2016, Brisbane Powerhouse.
Euthanasia and assisted suicide have been the subject of much moral, religious, philosophical, legal and human rights debate in Australia. This event will explore the euthanasia debate with expert speakers including Dr David Swanton (Exit International Chapter Coordinator and Director of Ethical Rights), Professor Colleen Cartwright (Principal Director of Cartwright Consulting and Emeritus Professor at Southern Cross University), Julie Borger (President of Cherish Life Queensland), Sharon Tregoning (Vice President of Dying With Dignity Queensland), Dr Maureen Mitchell (Palliative Care Specialist at The Wesley Hospital) and The Reverend Canon Richard Tutin (General Secretary of Queensland Churches Together).
All welcome – no booking or tickets required. Visit the Communify website for more event information.
The Victorian Department of Health & Human Services is developing legislation to give statutory recognition to advance care directives, and to provide new, simplified processes for medical treatment decision-making in Victoria. The Department has released a discussion paper, Simplifying medical treatment decision making and advance care planning, and is seeking public feedback on the proposed legislation.
To view the discussion paper visit the Victorian Department of Health & Human Services. Feedback on the proposal is due by 4pm on Friday 29 July 2016.
The Victorian Parliament Legal and Social Issues Committee has tabled its final report arising from its Inquiry into End of Life Choices. The report contains 49 recommendations about improvements to palliative care, advance care planning and end of life choices in Victoria. The Inquiry ran for ten months, and considered over 1000 written submissions, as well as evidence from public hearings.
The final report and further information about the Inquiry can be accessed from the Parliament of Victoria.
The QUT Law Review Special Issue – End of Life Law, Ethics, Policy and Practice (vol 16(1) (2016) is now available. This issue comprises seven articles from presentations at the International Conference on End of Life: Law, Ethics, Policy and Practice, which was held at the Queensland University of Technology, Brisbane, Australia in August 2014.
The conference was co-hosted by the Australian Centre for Health Law Research, the Dalhousie Health Law Institute (Canada) and the Tsinghua Health Law Research Center (China). The conference attracted almost 350 delegates from 26 countries and included representation from over a dozen different disciplines with an interest in end-of-life care.
The Special Issue articles span the four conference themes of withholding and withdrawing potentially life-sustaining treatment; euthanasia and assisted suicide; palliative care and terminal sedation; and determination of death and organ donation.
A Bill to legalise voluntary euthanasia was introduced into the South Australian Parliament in early February 2016 by Labor MP Steph Key. However the Bill has not yet been passed.
The Voluntary Euthanasia Bill 2016 provides for an adult to request voluntary euthanasia on the basis he or she experiences ‘unbearable and hopeless suffering’. It would not be necessary for the person to have a terminal illness in order to receive voluntary euthanasia.
Euthanasia and assisted suicide are illegal in all Australian States and Territories. The introduction of the South Australian Bill follows attempts in other States and Territories in recent years to legalise euthanasia.