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Recent developments: 22 September 2017
Voluntary Assisted Dying Bills introduced: Conscience votes imminent
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.
Recommendations for a definition of advance care planning
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:
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.
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.
Recent developments: 15 September 2017
Voluntary Assisted Dying Bills to be introduced in Victorian and New South Wales Parliaments
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.
Recent developments: 28 July 2017
Final decision: In the matter of Charlie Gard
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.
Further articles of interest about this case include:
- ‘The Moral of the Case of Charlie Gard: Giving dying patients experimental treatment … early’ by Julian Savulescu, Practical Ethics Blog, 5 July 2017.
- ‘Charlie Gard – A different kind of medical futility conflict – no transfer allowed’ by Thaddeus Pope, Bioethics Blog, 13 June 2017.
- ‘Beyond resources: denying parental requests for futile treatment’ by Dominic Wilkinson, The Lancet (13 May 2017) 389: 1866-7.
- ‘The Ethics of Treatment for Charlie Gard: Resources for students/media’, Practical Ethics Blog, 17 July 2017.
- ‘Three ways the Charlie Gard case could affect future end-of-life cases globally’ by Neera Bhatia, Deakin University, The Conversation, 25 July 2017.
Recent developments: 21-24 July 2017
Commentary: Victoria may soon have assisted dying laws for terminally ill patients
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.
Final report on Victorian Voluntary Assisted Dying legislation released
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.
Recent developments: 14 July 2017
This week we provide updates on:
- Further case update: In the matter of Charlie Gard
- Journal of Medical Ethics Special Issue: Disorders of Consciousness
Further case update: In the matter of Charlie Gard
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:
- That by withdrawing Charlie's treatment the hospital was preventing access to life-sustaining treatment (in the US) for Charlie, resulting in the unlawful deprivation of his liberty, in contravention of Article 2 (Right to life) and Article 5 (Right to liberty and security) of the Convention.
- The court decisions about Charlie constituted an unfair and disproportionate interference with their parental rights under Article 6 (Right to a fair trial) and Article 8 (Right to respect for private and family life) of the Convention.
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.
Journal of Medical Ethics Special Issue: Disorders of Consciousness
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:
- What is PVS and MCS, and is it possible to categorise a patient as falling within one category rather than another?
- If possible, is it useful (clinically) or necessary (legally) to do so?
- What is the law that governs how we should treat such patients?
- What is meant by the term ‘best interests’ in the context of withdrawing CANH?
- Who should make the decision about withdrawing treatment.
Recent developments: 16 June 2017
This week we provide updates on:
- Case Update: In the matter of Charlie Gard
- Provisional conference program released: 2nd International Conference on End of Life, Law, Policy and Practice
Case Update: In the matter of Charlie Gard (8 June 2017, Supreme Court of the United Kingdom)
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:
- ‘Charlie Gard – A different kind of medical futility conflict – no transfer allowed’ by Thaddeus Pope
- ‘Frequently asked questions about the Charlie Gard court case’ from the Great Ormond Street Hospital for Children.
Provisional conference program released: 2nd International Conference on End of Life, Law, Policy and Practice, 13-15 September 2017
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 email@example.com
Recent developments: 26 May 2017
This week we provide updates on:
- Tasmanian Voluntary Assisted Dying Bill defeated in conscience vote
- Interim report on Victorian Voluntary Assisted Dying legislation released
- Invitation to lecture: What does the community know about the law at end of life? 13 June 2017
Tasmanian Voluntary Assisted Dying Bill defeated in conscience vote
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.
Interim report on Victorian Voluntary Assisted Dying legislation released
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.
Invitation to lecture: What does the community know about end-of-life law: 13 June 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.
Recent developments: 19 May 2017
This week we provide updates on:
- This National Palliative Care week, consider how well you know your legal rights about end-of-life decision-making
- New South Wales Voluntary Assisted Dying Bill 2017 released
- Advance Care Directives and Indigenous Australians
- Be at least 25 years old and reside in New South Wales,
- Have a terminal illness which ‘in reasonable medical judgment’ will result in a patient’s death within 12 months, and
- Be experiencing severe pain, suffering or physical incapacity to an extent unacceptable to the patient.
- Patients may self-administer a lethal substance to end their lives, or may be assisted by their medical practitioner or a nominated person.
- 48 hours must elapse between completion of the certificate of request, and the provision of assistance.
- Health providers may conscientiously object to being involved in assisting a person to die.
- A framework for judicial review by the Supreme Court, whereby a close relative of the patient may apply for an order that the request for voluntary assisted dying is not effective.
- New brochures for patients, families and health professionals: End of Life Law in Australia website
- New article on unilateral withholding and withdrawal of potentially life-sustaining treatment: Values-based law reform
- Voluntary Assisted Dying Bill: Victoria
- AMAQ Health Vision for Care at the End of Life
- How many people end their lives using euthanasia in places where it is legal?
- Support for doctors to recognise when patients are approaching the end of life, and to learn how to better communicate this to their patients, in order to avoid futile or burdensome treatment.
- Improved access to and use of advance care planning by:
- Delivering an education campaign for doctors and the public about advance care planning,
- Implementing, with Queensland Health, Queensland’s end-of-life care strategy, including developing guidelines to prepare doctors for end-of-life planning discussions with patients and families, and
- Using electronic systems (My Health Record and Queensland Health’s Integrated Electronic Medical Record) to improve access to advance care plans.
- Develop the skills of all health practitioners to ensure delivery of appropriate end-of-life care. It recognises that while general practitioners and non-specialists can and should deliver end-of-life care, specialist palliative care services should also be developed for complex problems, and to support non-specialist care.
This National Palliative Care week, consider how well you know your legal rights about end-of-life decision-making
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 (firstname.lastname@example.org or 07 3365 2505). The researchers are especially interested in speaking with people based in New South Wales and Victoria.
New South Wales Voluntary Assisted Dying Bill 2017 released
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 email@example.com.
Advance Care Directives and Indigenous Australians
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.
Recent developments: 28 April 2017
This week we provide updates on:
New brochures for patients, families and health professionals: End of Life Law in Australia
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 firstname.lastname@example.org
Unilateral withholding and withdrawal of potentially life-sustaining treatment: Values-based law reform
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.
Voluntary Assisted Dying Bill: Victoria
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.
Recent developments: 27 March 2017
This week we provide updates on:
NSW Guardianship Review: New Question Papers released
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.
Recent developments: 6 March 2017
This week we provide updates on:
Australian Medical Association Queensland Health Vision for Care at the End of Life
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:
- Ensure that palliative care in Queensland is meeting patient need, through initiatives including obtaining benchmark data, enhanced palliative care funding and improved services.
- That 50% of Queenslanders over 50 years of age have an advance care plan through strategies including:
- Clarifying the role of common law advance directives in Queensland,
- Creating more user-friendly advance health directive forms,
- Improving access to directives by utilising electronic systems,
- Undertaking public education initiatives,
- Implementing the Queensland Government’s Strategy for End-of-Life Care, and
- Discussing with the Federal Government the establishment of Medicare rebates to appropriately remunerate clinicians to undertake advance care planning with patients.
New article: How many people end their lives using euthanasia in places where it is legal?
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.
Recent developments: 22 February 2017
This week we provide updates on:
- New ACQSHC National consensus statement on safe and high-quality paediatric end-of-life care
- Developments in regulation of medicinal use of cannabis
New ACSQHC National consensus statement on safe and high-quality paediatric end-of-life care
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.
Developments in regulation of medicinal use of cannabis
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
- implementation of the regulatory scheme allowing for the cultivation and manufacture of medicinal cannabis in Australia;
- the design of medical prescribing guidelines and the use of the Authorised Prescriber and Special Access Scheme mechanisms allowing for patient access; and
- the current state of medical evidence supporting the use of medicinal cannabis.
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.
Recent developments: 11 January 2017
This week we provide updates on:
- 2nd International Conference on End of Life, Law, Policy and Practice 2017: Registrations and Abstracts open
- New opt out organ donation laws for France
- NSW Health consultation on use of ante mortem (before death) interventions for organ donation
2nd International Conference on End of Life, Law, Policy and Practice 2017: Registrations and Abstracts open
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:
- Withholding and withdrawing potentially life-sustaining treatment (e.g. the “futile treatment” debate, artificial hydration and nutrition)
- Palliative sedation
- Advance directives and advance care planning
- Medical assistance in dying (euthanasia and assisted suicide)
- Other end of life law, ethics, policy, and practice issues.
France introduces opt out organ donation laws
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.
Submissions invited: NSW Health consultation on use of ante mortem (before death) interventions for organ donation
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:
- the individual prior to their death (i.e. by registering consent to donation on the Australian Organ Donor Register), or
- the individual’s family after death.
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.
Recent developments: 19 December 2016
This week we provide updates on:
- Victorian Government’s response to End of Life Choices Inquiry final report
- New Position Statement on End-of-Life Care, and Issues Brief: Australian Healthcare & Hospitals Association
Victorian Government’s response to End of Life Choices Inquiry final report
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:
- Improvements to advance care planning including:
- Measures to support health services to prioritise implementation of advance care planning;
- Better reporting and data collection about advance care planning; and
- The development of an updated advance care directive form which allows patients to record their values and preferences.
- Measures to improve awareness and uptake of advance care planning, such as:
- Lobbying the Commonwealth Government to consider creating a Medicare Benefits Schedule (MBS) item number for advance care planning;
- Educating health professionals about using existing MBS item numbers for advance care planning;
- Introducing strategies in the Government’s end of life care framework to ensure that end of life discussions and planning occurs;
- Developing education campaigns, guidelines/resources and medical education for health practitioners to support advance care planning, end of life conversations and education; and
- Implementing a community awareness campaign to improve understanding of end of life choices and that the Victorian Government lobby for a national public awareness campaign.
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:
- Provide for instructional advance health directives (to replace refusal of treatment certificates);
- Enable refusal of consent to treatment in relation to future conditions; and
- Enable substitute decision-makers to refuse medical treatment in particular circumstances.
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:
- the doctrine of double effect, to strengthen legal protection for doctors providing end of life care, and
- the common law position on withholding or withdrawing futile treatment.
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.
New Position Statement on End of Life Care and Issues Brief: Australian Healthcare & Hospitals Association
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:
- Support for advance care planning through uniform national legislative frameworks, as well as 'improved My Health record integration and connectivity to hospitals, primary care, community and aged care'.
- Education and public information campaigns to improve public awareness and engagement in issues relating to advance care planning, end of life care, and death and dying; and
- Reforms to palliative care services and care models to better respond to end of life needs, and to meet increasing demand. It notes such changes 'require a coordinated and integrated approach across primary, community, specialist and hospital care'.
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.
Recent developments: 12 December 2016
This week we provide updates on:
- Assisted dying legislation in Victoria and Tasmania.
- Victoria's new Medical Treatment Planning and Decisions Act 2016
- New paper: Doctors' views on whether law has a role in medical practice at end of life.
Assisted dying legislation in Victoria and Tasmania
- It will apply only to adults with decision-making capacity, who are in the final weeks or months of their life,
- The patient's request for euthanasia must be repeated and enduring,
- The patient must have a serious and incurable condition that is causing enduring and unbearable suffering that can't be relieved,
- Two doctors must approve the the prescription of lethal medication, and a psychiatrist may also be involved if questions about the adult's capacity arise,
- The patient would be prescribed lethal medication, which would be taken by the patient themselves, rather than being directly administered to the patient by the doctor.
- It would be available to a competent adult,
- The adult must be in the advanced stages of a serious incurable and irreversible medical condition, which causes persistent, intolerable suffering which cannot be relieved by available medical treatment or palliative care, and for which there is no reasonable prospect of a permanent improvement in the person’s medical condition,
- Two medical practitioners must approve the prescription of assisted dying medication to the person, and
- The person may self-administer the assisted dying medication, or the primary medical practitioner may administer it.
Medical Treatment Planning and Decisions Act 2016 passed by Victorian Parliament
- enable people to make medical treatment decisions, including consenting to or refusing treatment for future health conditions, in an advance care directive;
- enable medical treatment decisions to be made for a person who lacks capacity;
- allow the appointment of substitute decision-makers, and enable supported decision-making;
- remove medical treatment from the Powers of Attorney Act 2014 (Vic) and
- repeal the Medical Treatment Act 1988 (Vic).
New paper: Doctors' views on whether law has a role in medical practice at end of life
New Australian Medical Association Position Statement: Euthanasia and Physician Assisted Suicide 2016
- Notes the AMA’s position on good quality end of life care and the relief of pain and suffering.
- Encourages governments to improve end of life care, including through adequately funding advance care planning and palliative care services, development of clear, nationally consistent laws which protect doctors providing quality end of life care, and increased development and resourcing of enhanced palliative care services to support health professionals and carers providing end of life care.
- Describes how doctors should respond to a patient’s request for euthanasia or physician assisted suicide.
- Clarifies that a doctor (acting in accordance with good medical practice) does not perform euthanasia or physician-assisted suicide by:
- not initiating or continuing life-prolonging measures, or
- administering treatment or performing other actions intended to relieve symptoms which may have a secondary consequence of hastening death.
Medicinal cannabis law reform in Australia
- Particular classes of specialist doctors, who may prescribe specified medicinal cannabis products to groups of patients with a specified condition or symptom (patient-class prescriber pathway), or
- General practitioners or medical specialists, who may apply to Queensland Health for approval to prescribe medicinal cannabis to a particular patient (single-patient prescriber pathway).
- a patient has tried all conventional treatments available and these have failed, OR
- the conventional treatment causes intolerable side effects, AND
- the doctor provides clinical evidence that a specific type of medicinal cannabis product is effective for the particular condition or symptoms.
- In New South Wales, the Poisons and Therapeutic Goods Amendment (designated Non-ARTG products) Regulation 2016 took effect in August 2016, allowing NSW Health to grant approvals to doctors to prescribe some cannabis-based medicinal products.
- In Tasmania, the State Government is establishing a Controlled Access Scheme to enable doctors to prescribe medicinal cannabis from 2017.
- In Western Australia and South Australia, medicinal cannabis will be available to some patients, as a result of the Therapeutic Goods Administration’s reclassification (from 1 November 2016) of cannabis-based products for medicinal or research purposes as Schedule 8 medicines (or controlled drugs).
- The Australian Capital Territory government is also working towards establishing a legal medicinal cannabis scheme.
South Australian Voluntary Euthanasia Bill defeated
Death with Dignity Bill 2016 (SA)
- The person is competent (i.e. has decision-making capacity),
- The person is suffering from a terminal medical condition which:
- Is causing him or her intolerable suffering; and
- No available medical treatment or palliative care will relieve the person’s suffering,
- Due to the terminal condition the person’s death is inevitable, and
- He or she has resided in South Australia for at least 12 months prior to making the request.
- A requirement the person requesting voluntary euthanasia be assessed by two independent medical practitioners and a psychiatrist.
- The request must be witnessed by two witnesses in the presence of a medical practitioner.
- 14 days must pass from the date the person was examined and assessed by a medical practitioner before the administration or self-administration of voluntary euthanasia can occur.
Medical assistance in dying in Canada
- eligible for health services funded by government in Canada (or would be but for minimum period of residence or waiting period)
- at least 18 years old
- capable of making decisions with respect to their health
- have made a voluntary request
- have given informed consent to receive medical assistance in dying after having been informed of means available to relieve suffering, including palliative care
- have a grievous and irremediable medical condition
- they have a serious and incurable illness, disease or disability
- they are in an advanced state of irreversible decline in capability
- that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and cannot be relieved under conditions that they consider acceptable
- their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining
- ten day waiting period between the day the request was signed and the day MAiD is provided (unless death or loss of capacity is imminent)
- reconfirmation of consent required immediately before providing MAiD
20 year anniversary of Bob Dent's death: Euthanasia reform update
Medical Treatment Planning and Decisions Bill 2016 introduced in Victoria
- enable people to make medical treatment decisions, including consenting to or refusing treatment, for future health conditions;
- enable medical treatment decisions to be made for a person who lacks capacity;
- allow the appointment of substitute decision-makers and enable supported decision-making; and
- repeal the Medical Treatment Act 1988 (Vic).
New adult guardianship laws for the Northern Territory
- provides a contemporary decision-making framework for the Northern Territory (similar to other Australian jurisdictions);
- introduces new guardianship principles;
- establishes an independent Office of the Public Guardian, and an independent statutory officer as the Public Guardian;
- transfers jurisdiction for guardianship matters from the Local Court to the Northern Territory Civil and Administrative Tribunal; and
- grants guardians greater authority to make health care decisions.
Death of first minor under Belgium's voluntary euthanasia laws
Case update: Application of a Local Health District; Re a Patient Fay NSWSC 624
Case update: Director Clinical Services, Child & Adolescent Health Services v Kiszko & Anor  FCWA 75
Register now! ACHLR Annual Public Lecture: Professor Jocelyn Downie: 'The Legalization of Medical Assistance in Dying - Lessons from Canada', 19 October 2016, QUT, Brisbane.
Clarifying end-of-life law for doctors: MJA Insight article
Are doctors who know the law more likely to follow it?
Tasmanian Parliamentary Inquiry into Palliative Care
National consultation: Paediatric end-of-life care consensus statement
Save the date! 2nd International Conference on End of Life: Law, Ethics, Policy and Practice
The Challenge of Futile Treatment
California's End of Life Option Act
Patient-Oncologist prognosis discordance study
Case update: Re: A (A Child)  EWCA Civ 759
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  UKSC 67;  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  EWHC 507 (Fam);  2 FLR 319 per Holman J).