Voluntary assisted dying and telehealth: Commonwealth carriage service laws are putting clinicians at risk. Eliana Close, Katrine del Villar et al, Medical Journal of Australia.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.
Recent Developments: 31 October 2021
This month we provide updates on:
- NSW voluntary assisted dying Bill referred to Parliamentary Committee for inquiry
- Catherine’s case: When is it lawful to withhold medical treatment at end of life
- How can aged care staff manage conflict with residents and families?
- New Gwandalan modules: Palliative care for Aboriginal and Torres Strait Islander peoples
- New publications and resources: End of life law and policy
NSW voluntary assisted dying Bill referred to Parliamentary Committee for inquiry
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.
Catherine’s case: When is is it lawful to withhold medical treatment at end of life
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.
How can aged care staff manage conflict with residents and families?
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.
New Gwandalan modules: Palliative care for Aboriginal and Torres Strait Islander peoples
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:
- Supporting Choices at End-of-Life
- Strengthening Partnerships
- Community Engagement.
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.
New publications and resources: End of life law and policy
- Intentional hastening of death through medication: A case series analysis of Victorian deaths prior to the Voluntary Assisted Dying Act 2017. Lindy Willmott et al, Internal Medicine Journal.
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.
- Regulating voluntary assisted dying practice: A policy analysis from Victoria, Australia: Eliana Close et al, Health Policy. (Note: link is open access to 15 November 2021).
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.
Recent Developments: 30 September 2021
This month we provide updates on:
- Queensland parliament passes voluntary assisted dying laws
- Making end of life decisions when a person’s capacity is in question
- Can a person refuse treatment or transfer to hospital in an emergency?
- App for health professionals seeking palliative and end of life care learning resources
- New publications and resources: End of life law and policy
Queensland parliament passes voluntary assisted dying laws
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:
- Eligibility criteria: In Queensland the person’s disease, illness or medical condition must be likely to cause death within 12 months. In other States death must be expected within 6 months, or 12 months for a neurodegenerative disease.
- Institutional participation: Queensland, along with South Australia, are the only States with VAD laws that regulate institutional participation in VAD (e.g. by residential aged care facilities or other health services (including private hospitals)).
- Provision of contact details by practitioner who conscientiously objects: In Queensland, any registered health practitioner who refuses to assist a patient with VAD due to a conscientious objection has to provide the person with the contact details of another practitioner (or navigator service) who may be able to assist.
For more information about VAD in Queensland visit our webpage or Queensland Health.
Making end of life decisions when a person’s capacity is in question
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.
Can a person refuse treatment or transfer to hospital in an emergency?
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.
App for health professionals seeking palliative and end of life care learning resources
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.
New publications and resources: End of life law and policy
- “I used to call him a non-decision-maker - I never do that anymore”: Parental reflections about training to support decision-making of their adult offspring with intellectual disabilities. Christine Bigby et al, Disability and Rehabilitation.
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.
- Role of Law in End-of-Life Decision-Making: Perspectives of Patients, Substitute Decision-Makers and Families. Lindy Willmott et al, Journal of Law and Medicine.
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.
- Operationalizing legal rights in end-of-life decision-making: A qualitative study. Cheryl Tilse et al, Palliative Medicine.
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.
Recent Developments: 31 August 2021
This month we provide updates on:
- New end of life law modules for doctors, nurses, allied health professionals, and students launched
- Parliamentary Committee recommends voluntary assisted dying legislation be passed in Queensland
- What does the law say about giving treatment that is futile or would not benefit a person?
- Vacancy: Research Fellow, Voluntary Assisted Dying
- New publications: End of life law and policy
New end of life law modules for doctors, nurses, and allied health professionals launched
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.
Parliamentary Committee recommends voluntary assisted dying legislation be passed in Queensland
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:
- That the Commonwealth amend the Code to exclude VAD from the definition of ‘suicide’.
- That the Commonwealth Director of Public Prosecutions issue guidelines stating that it will not prosecute a doctor or other person for these offences where they act in accordance with state or territory VAD laws.
In reaching these recommendations, the Committee considered over 6,000 submissions, and held public hearings into the Bill.
What does the law say about giving treatment that is futile or would not benefit a person?
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 .
New publications: End of life law and policy
Eligibility criteria in voluntary assisted dying legislation determine access to assistance to die. This paper undertakes the practical exercise of analysing 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. The paper argues that it is critical to evaluate voluntary assisted dying legislation in relation to key medical conditions to determine the law’s boundaries and operation. A key finding is that some frameworks tended to grant the same access to voluntary assisted dying, despite having different eligibility criteria. The paper concludes with broader regulatory insights for designing voluntary assisted dying frameworks both for jurisdictions considering reform and those reviewing existing legislation.
Whether or not Australian states and territories should reform their laws to allow assisted dying is currently a lively debate throughout Australia. At the time of writing, Victoria was the only jurisdiction in which assisted dying can lawfully be provided in limited circumstances. The Victorian law was enacted in late 2017 and commenced operation in June 2019. More recently, parliaments in Western Australia and Tasmania enacted assisted dying laws, commencing in July 2021 and September 2022, respectively. Law reform is also underway in South Australia and Queensland. Elsewhere, the authors have argued that decisions about whether there should be reform and, if so, the nature of that reform should be governed by values relevant to decision-making at the end of life. These values – life, autonomy, freedom of conscience, equality, the rule of law, protecting the vulnerable, and reducing human suffering – are based on existing Australian legal principle. In this chapter, the authors analyse the Victorian Voluntary Assisted Dying Act 2017, the first state legislation to be enacted in Australia, and consider the extent to which it promotes (or does not promote) these values. The chapter concludes by suggesting how legislation may better promote these articulated values.
This article explores the clinical and legal roles of speech pathologists at the end of life. It also discusses how the End of Life Law for Clinicians training can improve speech pathologists’ knowledge of the law governing end of life decision-making and clinical practice, and enhance their confidence in delivering care that is consistent with the law.
This Australian College of Critical Care Nurses (ACCCN) Position Statement provides practical guidance to critical care nurses on the provision of end-of-life care to adults in Australian critical care settings.
Recent Development: 16 August 2021
New policy briefing outlines nine key points for voluntary assisted dying law, policy and practice in Australia
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.
Recent Developments: July 2021
This month we provide updates on:
- Coffee with a Colleague: Transitions in decision-making authority at the end of life
- New Gwandalan elearning for health professionals providing palliative care to Aboriginal and Torres Strait Islander people
- Advance Care Planning Australia’s landmark prevalence research completed
- Registration open for the first ever ACP-I Digital Exchange
- New publications: End of life law and policy
Coffee with a Colleague: Transitions in decision-making authority at the end of life
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.
New Gwandalan elearning for health professionals providing palliative care to Aboriginal and Torres Strait Islander 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:
- An introduction to Aboriginal and Torres Strait Islander Palliative Care and Cultural Practice
- Safe Communication
- Supporting Choices at End-of-Life
- Strengthening Partnerships
- Community Engagement
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’s landmark prevalence research project completed
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:
Registration open for the Advance Care Planning International Digital Exchange
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.
New publications: End of life law and policy
Like many countries where voluntary assisted dying (VAD) is legal, eligible doctors in Victoria, Australia, have sole legal authority to provide it. Doctors’ attitudes towards legalised VAD have direct bearing on their willingness to participate in VAD and consequently, on whether permissive laws can effectively facilitate access to VAD. This study aimed to explore how some Victorian doctors are perceiving and experiencing the provision of legalised VAD under a recently commenced law. Semi-structured interviews with 25 Victorian doctors with no in-principle objection to legalised VAD were conducted between July 2019-February 2020. The study found that doctors perceive or experience VAD to fundamentally challenge traditional medical practice. Barriers to access to VAD derive from applicant, communication, and doctor-related factors. Doctors’ willingness to participate in VAD is situation specific.
Deceased organ donation is built upon two ethical and legal rules: the dead donor, and consenting donor rules. The dead donor rule is that ‘donors must be determined to be dead before their organs are recovered’. Worldwide, there are different legislative models for the consenting donor rule: opt-in, opt-out, hybrid, and soft or hard enforcement. Consent to donation may legally permit donation, but it does not mandate that donation occurs or dictate what clinicians should do in a particular circumstance. Clinicians’ actions should be guided by professional standards, operating within the boundaries set by law, and based on science, ethics and cultural expectations.
This article is the final paper in the Prevalence of Advance Care Planning Documentation in Australian Health and Residential Aged Care Services study. It reports on findings from an audit of health records among older Australians accessing general practices (GP), hospitals, and residential aged care facilities (RACF). One hundred organisations (GP = 15, hospitals = 27, RACFs = 58) participated, contributing data from 4,187 patient/resident health records. Median prevalence of ACDs across organisations was 19.4%. The median ACD prevalence was low, with substantial variation across organisations. Sector type was the strongest predictor, being highest in RACFs.
Recent Developments: June 2021
This month we provide updates on:
- South Australian parliament passes voluntary assisted dying legislation
- Can a person refuse medical treatment, even if it might help them live longer?
- LGBTIQ+ Health Australia National Palliative Care Survey
- New publications: End of life law and policy
South Australian parliament passes voluntary assisted dying legislation
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.
Can a person refuse medical treatment, even if it might help them live longer?
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 National Palliative Care Survey
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:
- An LGBTIQ+ person
- A health professional who is not LGBTIQ+
- An LGBTIQ+ health professional
- An Australia resident
- 18 years and older
- Proficient enough in English to complete an online survey in English.
For further information contact LGBTIQ+ Health Australia.
New publications: End of life law and policy
This study compared levels of knowledge about end-of-life law among Australian health professionals and medical students through an online survey of participants enrolled in a national training programme on end of life law. The response rate was 67% (1653/2456). The final sample (n=1564, 95% of respondents) included doctors, medical students, nurses and a range of allied health professionals. Doctors and nurses had slightly higher levels of legal knowledge than did medical students and allied health professionals; all had critical knowledge gaps.
Demographic and professional characteristics predicted knowledge levels, with experience of end of life law in practice, confidence applying law, and recent continuing professional development being positively associated with legal knowledge.
This qualitative study investigated the perspectives of doctors involved with voluntary assisted dying in Victoria regarding the Voluntary Assisted Dying Act 2017 (Vic) and its operation. Semi-structured interviews were conducted with 32 doctors who had participated in the voluntary assisted dying system during its first year of operation.
Three major themes related to problems during the first year of operation of the Act were identified: the statutory prohibition of health professionals initiating discussions with their patients about voluntary assisted dying; the Department of Health and Human Services guidance requirement that all doctor‒patient, doctor‒pharmacist, and pharmacist‒patient interactions be face to-face; and aspects of implementation, including problems with the voluntary assisted dying online portal, obtaining documentary evidence to establish eligibility, and inadequate resourcing of the Statewide Pharmacy Service. While legislative change may resolve some of these concerns, most can be ameliorated by improving the processes and systems.
In jurisdictions where voluntary assisted dying (VAD) is legal, eligibility assessments, prescription and administration of a VAD substance are commonly performed by senior doctors. Junior doctors’ involvement is limited to a range of more peripheral aspects of patient care relating to VAD. In Victoria all health professionals have a right under the legislation to conscientiously object to involvement in the VAD process, including provision of information about VAD. While this protection appears categorical and straightforward, conscientious objection to VAD-related care is ethically complex for junior doctors for reasons that are specific to this group of clinicians.
For junior doctors wishing to exercise a conscientious objection to VAD, their dependence on their senior colleagues for career progression creates unique risks and burdens. In a context where senior colleagues are supportive of VAD, the junior doctor’s subordinate position in the medical hierarchy exposes them to potential significant harms: compromising their moral integrity by participating, or compromising their career progression by objecting. In jurisdictions intending to provide all health professionals with meaningful conscientious objection protection in relation to VAD, strong specific support for junior doctors is needed through local institutional policies and culture.
- Intentional hastening of death through medication: A case series analysis of Victorian deaths prior to the Voluntary Assisted Dying Act 2017. Lindy Willmott et al, Internal Medicine Journal.
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.
Recent Developments: May 2021
This month we provide updates on:
- Bill to legalise voluntary assisted dying introduced in Queensland
- The importance of clear triage protocols during pandemics
- How does the law protect health professionals giving pain and symptom relief?
- New publications: End of life law and policy
Bill to legalise voluntary assisted dying introduced in Queensland
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:
- A person would be eligible to access VAD if they are expected to die within 12 months. In other jurisdictions, the period of a person’s life expectancy must be 6 months, or 12 months for a person with a progressive neurological condition.
- Limitations on the ability of an institution (e.g. a health service, residential aged care or personal care service) to object to providing access to VAD. Queensland’s proposed laws are unique in this regard, as Victorian, Western Australian and Tasmanian laws only address situations where individual health professionals, not entities, conscientiously object to providing VAD.
- An appropriately qualified medical practitioner, nurse practitioner or registered nurse may be an administering health practitioner. In other jurisdictions only one or two of these types of health practitioners may administer the VAD medication.
- Exemptions may be granted, in limited circumstances, for a person who is not an Australian citizen, or a Queensland resident (for at least 12 months) to access VAD.
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 importance of clear triage protocols during pandemics
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.
How does the law protect health professionals giving pain and symptom relief?
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.
New publications: End of life law and policy
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.
Recent Developments: April 2021
This month we provide updates on:
- New quick guide for health professionals on how to do advance care planning
- Tasmania's voluntary assisted dying legislation receives assent
- Can urgent medical treatment and transfer to hospital be refused?
- New publications: End of life law and policy
New quick guide for health professionals on how to do advance care planning
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.
Tasmanian voluntary assisted dying legislation receives assent
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.
Can urgent medical treatment and transfer to hospital be refused?
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.
New publications: End of life law and policy
- Barriers to adequate pain and symptom relief at the end of life: A qualitative study capturing nurses’ perspectives. Katrin Gerber et al, Collegian: This paper examines nurses’ perceptions of barriers to adequate symptom relief at end of life. Semi-structured interviews were conducted with 25 nurses who routinely prescribed or provided pain relief to patients near the end of life in New South Wales and Queensland. Nurses identified five barriers to providing pain relief (fears about symptom relief; lack of knowledge, experience and training; personal, cultural and religious beliefs; lack of communication; and institutional barriers). These barriers indicate a need for targeted interventions to support nurses to care for patients at the end of life.
- Expanding controlled donation after the circulatory determination of death: statement from an international collaborative. Beatriz Domínguez-Gil et al, Intensive Care Medicine: This International Collaborative Statement aims to expand controlled donation after the circulatory determination of death (cDCDD). It describes the process of determining whether life-sustaining treatment should be withheld; and establishes the permanent cessation of circulation to the brain as the standard to determine death by circulatory criteria. It also discusses the value of perfusion repair for increasing the success of cDCDD organ transplantation.
Recent Developments: March 2021
This month we provide updates on:
- What matters to you most this National Advance Care Planning Week?
- Should Alistair's Advance Care Directive be followed?
- New Advance Care Planning publications
- New report on the rights of adults with cognitive disability
- Save the date! Oceanic Palliative Care Conference 2021
What matters to you most this National Advance Care Planning Week?
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.
Should Alistair's Advance Care Directive be followed?
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.
New Advance Care Planning publications
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:
- Inadequate completion of advance care directives by individuals with dementia: national audit of health and aged care facilities: Jamie Bryant et al, BMJ Supportive & Palliative Care: This paper reports on a multicentre audit of Australian hospitals, general practices and residential aged care facilities that explored the prevalence of Advance Care Directives and other Advance Care Planning documentation among people with dementia, and the characteristics associated with having these documents. Of the 1,388 people audited, 60.8% had planning documentation, 31.6% had an Advance Care Directive, and 29.3% has a planning document completed by a health professional or someone else. Older people were more likely to have planning documents.
- Public knowledge, preferences and experiences about medical substitute decision-making: a national cross-sectional survey. Marcus Sellars et al, BMJ Supportive & Palliative Care: This paper discusses the results from a national cross-sectional online survey that explored the knowledge, preferences and experiences of substitute decision-making for medical treatment decisions among Australian adults. Of the 1,120 adults in the final sample, 13% has acted as a decision-maker, and 33% of all participants were aware of substitute decision-making laws. It concludes ‘the Australian public may have low to moderate knowledge about the substitute decision-making role and access only minimal support when making challenging medical decisions’.
New report on the rights of adults with a cognitive disability
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.
Save the date! Oceanic Palliative Care Conference 2021
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.
Recent Developments: February 2021
This month we provide updates on:
- Voluntary assisted dying law reform across Australia
- Applications closing soon! PhD scholarship on regulation of voluntary assisted dying law
- When does a person have capacity to consent to treatment?
- New publications: End of life law and policy
Voluntary assisted dying law reform across Australia
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.
Applications closing soon! PhD Scholarship on regulation of voluntary assisted dying
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.
When does a person have capacity to consent to treatment?
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.
New publications: End of life law and policy
- When patients behave badly: Consent, breach of the duty of care and the law . Anne-Maree Kelly, Tina Cockburn and Bill Madden, Emergency Medicine Australasia. Patients who are abusive or aggressive in ED raise special clinical and legal challenges. Using a case illustration, this paper discusses legal issues which arise in this context, including how the standard of care owed by clinicians is determined and what may constitute a breach of duty; such patients' right to consent to (or decline) tests and treatment; and when clinicians may lawfully act without consent and/or control the patient's behaviour.
- Voluntary assisted dying and the legality of using a telephone or internet service: The impact of Commonwealth ‘Carriage Service’ offences. Katrine Del Villar, Eliana Close, Rachel Hews et al, Monash University Law Review. Victoria and Western Australia recently passed legislation to permit voluntary assisted dying (VAD), under strict conditions, with other states expected to follow. Although laws on VAD are a state responsibility, a significant hurdle to their implementation 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.
- Conflicts of interest in the context of end of life care for potential organ donors in Australia. Frank van Haren, Angus Carter, Elena Cavazzoni et al. Journal of Critical Care. This paper explores the ethical challenges experienced by donation physicians, arising from their dual obligation – to care for dying patients in intensive care while ensuring organ and tissue donation is considered according to best practice. Use of palliative analgesia and sedation with regards to withdrawal of cardiorespiratory support, the doctrine of double effect to guide ethical decision-making, and the management of conflicts of interest in the context of dual professional roles are also explored.
- Continuing Education Outcomes for Advance Care Planning: A Systematic Review of the Literature. Wendy Pearse et al, Journal of Continuing Education in the Health Professions. This systemic literature review examined studies about Advance Care Planning education programs with health professionals and care staff across health settings. It found ‘continuing education programs may improve participants’ perceptions of their own confidence, knowledge and skill, and overall preparedness to participate in ACP discussions with patients’, and that multimodal continuing education programs resulted in the best participant outcomes.
Recent Development: 28 January 2021
Apply now: New PhD Scholarship on regulation of voluntary assisted dying
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.
Recent developments: 30 November 2020
- Queensland’s new guardianship laws commence
- Tasmanian VAD Bill passes Legislative Council; New Zealanders vote yes to VAD
- Coffee with a Colleague: Voluntary Assisted Dying in the US and Australia: Comparing legislative choices
- New publications: End of life law and policy
Queensland’s new guardianship laws commence
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:
- New and expanded General principles and Health care principles to better reflect human rights, and support a person with impaired capacity to participate in decision-making. These principles must be applied by a person or entity involved in decision-making about health care for a person with impaired capacity.
- A requirement for all decision-makers to apply structured (supported) decision-making to support people to make their own decisions about health care. Where a person cannot make a decision with support, a substitute decision-maker may decide, applying a substituted judgment approach.
- Clarity around capacity tests for making an Advance Health Directive and Enduring Power of Attorney, and new forms for these documents.
- New Capacity Assessment Guidelines providing 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 matters.
- Changes to the definition of Statutory Health Attorney.
- Recognition of Enduring Powers of Attorney made interstate and in New Zealand.
The following pages of this website have been updated to reflect these reforms:
More information is also available from the Queensland Government.
Tasmanian VAD Bill passes the Legislative Council; New Zealanders vote yes to VAD
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:
- must be 18 years of age;
- must meet the residency requirements i.e. be an Australian citizen, permanent resident, or resident of Australia for at least 3 continuous years, and ordinarily resident in Tasmania for at least 12 continuous months before the first VAD request;
- have decision-making capacity;
- be acting voluntarily; and
- be suffering intolerably in relation to a relevant medical condition.
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:
- the person has a relevant medical condition;
- the person has persistent suffering that is intolerable (as defined in the Bill); and
- there is no available treatment reasonably likely to improve their condition, or overall health and wellbeing in a manner, to an extent or in a period of time that is acceptable to the person, and in the person’s opinion will lessen their suffering to an extent acceptable to them.
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.
Coffee with a Colleague: Voluntary Assisted Dying in the US and Australia: Comparing legislative choices
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.
New publications: End of life law and policy
- Conscientious participants and the ethical dimensions of physician support for legalised voluntary assisted dying. Dr Jodhi Rutherford, Journal of Medical Ethics. This article reports the findings of a small empirical study into how some Victorian physicians with no in-principle opposition towards the legalisation of VAD are ethically orientating themselves towards the law. It finds that in-principle-supportive physicians employ bioethical principles to justify their position but struggle to reconcile that approach with the broader medical profession’s opposition.
- Is the wisdom of a person's decision relevant to their capacity to make that decision? Dr Sam Boyle, Monash University Law Review. Significant uncertainty exists around the current test of capacity. It is agreed that the law is primarily directed at ‘function’; that is, an assessment of a person’s decision-making ability. However, there is conflicting authority over whether there is an ongoing role for ‘outcome’, that is, consideration of the perceived wisdom of the decision made by the person whose capacity is assessed. This article argues that assessing capacity, even under a functional test, is an inherently normative procedure from which consideration of the outcome of the decision cannot be fully extricated. It suggests how a balance between functional capacity assessment and consideration of outcomes in capacity assessment can be achieved.
- Development of voluntary assisted dying training in Victoria, Australia: A model for consideration. Ben White et al, Journal of Palliative Care. Voluntary assisted dying was legalised in Victoria in June 2019, and was the first jurisdiction internationally to legislatively mandate training for doctors conducting eligibility assessments of patients. Mandatory training was designed as a safeguard to ensure compliance within the system, so that only eligible patients would gain access to VAD. This article outlines the development of training mandated for doctors prior to undertaking eligibility assessments for VAD. The Victorian training provides standardised baseline knowledge to enhance the quality and consistency of decision-making by doctors. While further evaluation of this training is needed, it may provide a model for other jurisdictions considering making VAD lawful.
Recent developments: 28 October 2020
This week we provide updates on:
- Submissions invited on voluntary assisted dying laws for Queensland
- End of life law reform: South Australia and Tasmania
- Capacity assessment guidelines for Queensland
- CareSearch launches national Part of Life campaign
- Audio-visual witnessing of Advance Care Directives beyond Covid-19
Submissions invited on voluntary assisted dying laws for Queensland
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:
- eligibility criteria for accessing VAD
- VAD processes, including medical and health practitioners discussing VAD
- legal and ethical obligations of health practitioners
- appropriate safeguards and protections
- monitoring and compliance.
Submissions close on 27 November 2020. More information about Australia's law on assisted dying visit our webpage or download our factsheet.
End of life law reform: South Australia and Tasmania
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.
Capacity assessment guidelines for Queensland
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 launches national Part of Life campaign
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.
Audio-visual witnessing of Advance Care Directives beyond Covid-19
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.
Recent Developments: 30 September 2020
This week we provide updates on:
- End of Life Law for Clinicians: Supporting end of life and palliative care practice
- Updated Medical Code of Conduct released
- New website on Mental Health Law in Queensland
- Coffee with a Colleague: Skeletons in the Closet
- New publications: End of life law and policy
End of Life Law for Clinicians: Supporting end of life and palliative care practice
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.
Updated Medical Code of Conduct released
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:
- more on patient safety and clinical governance
- strengthened guidance about discrimination, bullying, sexual harassment and vexatious complaints
- an expanded section on cultural safety, including a new definition.
The new Code also contains revised sections on professionalism and public comment, access to care and conscientious objection, and culturally safe practice.
New website on Mental Health Law in Queensland
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.
Coffee with a Colleague: Skeletons in the Closet: Challenges for medicine, ethics and law
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.
New publications: End of life law and policy
- Factsheet for clinicians - Informed consent in health care: This Australian Commission on Safety and Quality in Health Care fact sheet provides information for clinicians on the key principles for informed consent, how to obtain informed consent, principles for assessing legal capacity and legal obligations.
Recent Developments: 27 August 2020
This week we provide updates on:
- Advance Care Planning during COVID-19
- New Zealand's End of Life Choice referendum
- Reducing the incidence of non-beneficial end of life treatment in hospitals
- The role of death doulas in end of life care
Advance Care Planning during COVID-19
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.
New Zealand's End of Life Choice referendum
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:
- be aged 18 years or over;
- be a citizen or permanent resident of New Zealand;
- suffers from a terminal illness that is likely to end their life within 6 months;
- is an advanced state of irreversible decline in physical capability;
- experiences unbearable suffering that cannot be eased in a manner the person considers tolerable; and
- is competent to make an informed decision about assisted dying.
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.
Reducing the incidence of non-beneficial end of life treatment in hospitals
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.
The role of death doulas in end of life care
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.
Recent Developments: 12 August 2020
Applications open: 2 new PhD Scholarships on regulation of voluntary assisted dying
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.
Recent Developments: 28 July 2020
This week we provide updates on:
- Addressing nurses’ fears of legal risks when providing end-of-life pain relief
- Non-beneficial treatment and decision-making during COVID-19: Online seminar
- Resuscitation planning: New resources
Addressing nurses’ fears of legal risks when providing end-of-life pain relief
A guest blog post by Dr Katrin Gerber, Professor Lindy Willmott, Professor Ben White, and Distinguished Professor Patsy Yates from Queensland University of Technology
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
- Willmott L, White B, Yates P, Mitchell G, Currow DC, Gerber K, Piper D. Nurses' knowledge of law at the end of life and implications for practice: A qualitative study. Palliat Med. 2020 Apr;34(4):524-532.
- Queensland University of Technology (QUT), End of Life Law in Australia. Palliative Medication [Internet]. Brisbane (QLD): QUT End of Life Law in Australia; 2020 [updated 2020 Apr 10; cited 2020 Jun 24].
- Willmott L, White B, Piper D, Yates P, Mitchell G, Currow D. Providing Palliative Care at the End of Life: Should Health Professionals Fear Regulation? J Law Med. 2018 Oct;26(1):214-245.
- Hunt RW. A perfect storm: fear of litigation for end of life care. Med J Aust. 2020 Feb;212(3):140-140.e1. doi: 10.5694/mja2.50465. Epub 2019 Dec 24.
- End of Life Directions for Aged Care (ELDAC). Legal Toolkit [Internet]. Brisbane (QLD); ELDAC; 2020 [updated 2020 Mar 02; cited 2020 Jun 24].
- End of Life Law for Clinicians (ELLC). Palliative Care Education and Training Collaborative: End of Life Law for Clinicians [Internet]. Brisbane (QLD): ELLC; 2020 [cited 2020 Jun 24].
- White B, Willmott L, Gerber K. Addressing nurses' legal fears in end-of-life care [Digital or visual products]. Brisbane (QLD): Queensland University of Technology (QUT); 2020. Video: 2.55min
Non-beneficial treatment and decision-making during COVID-19: Online seminar
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).
Resuscitation planning: New resources
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.
Recent developments: 29 June 2020
This week we provide updates on:
- Changes to Queensland’s Powers of Attorney Act during COVID
- Palliative Care Inquiry in Western Australia
- Review of Role and Operation of Powers of Attorney in South Australia
- New publications: End of life law and policy
Changes to Queensland’s Powers of Attorney Act during COVID
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:
- Witnessing of wills, Enduring Power of Attorney and Advance Health Directive forms may be completed via video.
- In addition to doctors, nurse practitioners may carry out capacity assessments for people to make an Advance Health Directive. Further information is available from the Office of the Chief Nursing and Midwifery Officer at OCNMO_ProfessionalCapability@health.qld.gov.au
- Enabling doctors or nurses to conduct capacity assessments by video.
These changes will be in force until 31 December 2020. To view the Regulation about these changes visit the Queensland Legislation website.
Palliative Care Inquiry in Western Australia
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.
Review of Role and Operation of Powers of Attorney in South Australia
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 .
New publications: End of life law and policy
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.
Recent developments: 21 May 2020
This week we provide updates on:
- National Palliative Care Week 2020
- Queensland Voluntary Assisted Dying legislation referred to Law Reform Commission
- New Future Fellowship Research Project
- PhD scholarship with the Australian Centre for Health Law Research
This National Palliative Care Week, brush up on your knowledge of pain relief and the law
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:
Queensland Voluntary Assisted Dying legislation referred to Law Reform Commission
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.
New Future Fellowship Research Project
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.
PhD scholarship with the Australian Centre for Health Law Research
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.
Recent developments: 16 April 2020
This week we provide updates on:
- Community knowledge, attitudes and experiences on substitute decision-making for medical decisions
- The Inappropriate Question: A new film on CPR conversations in hospitals
- Managing Disputes in Aged Care: What does the law say?
Community knowledge, attitudes and experiences on substitute decision-making for medical decisions
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:
- Poor actual knowledge of substitute decision-making legislation among respondents (average score of 2.3/5 for knowledge questions).
- Despite many participants being aware of Advance Care Planning and the ability to appoint a substitute decision-maker, few has completed an Advance Care Directive (6.7%) and/or appointed a decision-maker (6%).
- 13% had previously acted as a substitute decision-maker.
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.
The Inappropriate Question: A new film on CPR conversations in hospitals
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.
Managing disputes in aged care: What does the law say?
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:
- new case study about managing a dispute about medical treatment for an older person in a residential aged care facility, and
- factsheet that provides an overview of the law and dispute resolution options.
A range of resources to support palliative care and Advance Care Planning for older Australians are available at ELDAC.
Recent developments: 31 March 2020
This week we provide updates on:
- Parliamentary Inquiry recommends Voluntary Assisted Dying legislation for Queensland
- Evidence-based law making – Voluntary Assisted Dying in Australia animation
Parliamentary Inquiry recommends Voluntary Assisted Dying legislation for Queensland
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:
- To be eligible to access VAD, a person must be diagnosed by a medical practitioner as having an advanced and progressive terminal, chronic or neurodegenerative medical condition that cannot be alleviated in a manner acceptable to the person, and which will cause death.
- Access to VAD be limited to:
- adults aged 18 years or over,
- Australian citizens or permanent residents ordinarily resident in Queensland, and
- people with decision-making capacity.
- A person who is otherwise eligible to access VAD and has decision-making capacity should not be ineligible on the basis they have a mental health condition.
- There be no precise timeframes for accessing VAD (i.e. no time limit until the person’s anticipated death) due to the complex, subjective and unpredictable nature of the prognosis of terminal illness.
- Requirements for two independent medical practitioners to assess a person wanting to access VAD; controls on the qualifications required for participating practitioners; rigorous governance of systems for prescribing, dispensing and disposing of any VAD medications; protections from liability for practitioners and patients participating in the scheme; and thorough documentation and reporting requirements.
- The scheme not limit or stipulate the specific medications that may be used for voluntary assisted dying.
- The coordinating medical practitioner may determine whether self-administration of the VAD medication or administration by the practitioner is the method best suited to the person.
- Safeguards be introduced to ensure that participation in VAD does not nullify life insurance, funeral or health insurance held by people accessing VAD.
- No requirement that people seeking access to VAD receive counselling as a pre-condition to being eligible to receive VAD.
- Only the person wishing to access VAD be permitted to instigate a discussion with a medical practitioner about accessing VAD.
- For VAD applicants in rural and remote Queensland where a doctor or second doctor are not available, consideration be given to permitting registered nurses who meet training and other participation requirements to assess an applicant for VAD, and to administer the VAD medication.
- Health practitioners with a conscientious objection to participating in VAD be able to ‘opt out’ of participating, so long as patients’ rights to access the scheme are also protected. It further recommended that the scheme must be genuinely accessible to people with a life-limiting condition whose local doctor has a conscientious objection to VAD.
- A review body similar to the Victorian Voluntary Assisted Dying Review Board be established to provide oversight of the scheme.
- A comprehensive education campaign be undertaken to inform health practitioners and the general public about the scheme, its eligibility requirements, and health practitioners’ rights and responsibilities.
- Health practitioners involved in VAD complete mandatory training developed by the Department of Health in conjunction with peak health professional bodies.
- Further research, consultation and examination be undertaken in relation to improving end of life options for people who do not have decision-making capacity, particularly in relation to the effectiveness of Advance Health Directives.
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.
Evidence-based law making – Voluntary Assisted Dying in Australia animation
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.
Recent developments: 27 March 2020
This week we provide updates on:
- Queensland Parliament releases End of Life Inquiry Report
- New end of life law resources: Videos to support aged care, and why law matters in medicine podcast
Queensland Parliament releases End of Life Inquiry Report
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:
- Reforms to Queensland guardianship and powers of attorney legislation to:
- The Queensland Government undertake an education campaign for health professionals working in palliative and end of life care to ensure understanding of the appropriate use of opioids for palliative and end of life care medication. The Report further notes training and information is needed to dispel fears about the law and appropriate medication delivery.
- Residential aged care facilities be required to provide information and encourage residents to complete an Advance Health Directive after entering a facility.
- Queensland Health work with the Department of Justice and Attorney-General to ensure that Advance Care Planning documents are simple and accessible for users and health professionals.
- The Queensland Government amend and simplify existing Advance Care Planning guidelines for health professionals to ensure that they understand and can undertake their Advance Care Planning responsibilities.
- The Australian Government examine and reform practices regarding physical and chemical restraints to discourage their use.
- That reporting of elder abuse be a mandatory requirement for home care workers.
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.
New end of life law resources: Videos to support aged care, and why law matters in medicine podcast
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.
Recent developments: 5 March 2020
This week we provide updates on:
- Board releases 6-monthly report on voluntary assisted dying (VAD) in Victoria
- Find out more about Australia's laws on VAD
- Victoria’s new Guardianship laws commence
- New video for aged care on end of life law
- End of life law publication: Nurses’ knowledge of end of life law
Board releases 6-monthly report on voluntary assisted dying in Victoria
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:
- 135 people began the assessment process to access VAD.
- 102 Victorians were assessed as eligible to access VAD.
- 81 VAD permits were issued (70 self-administration permits and 11 practitioner administration permits). 19 requests for permits were withdrawn (e.g. due to administrative errors, or the person dying by other means).
- VAD medications were dispensed on 66 occasions.
- 52 deaths occurred by way of VAD. 43 deaths were by way of self-administered medication, and there were 9 instances of practitioner administration.
- 365 medical practitioners registered for the mandatory training to participate in VAD.
- 134 of medical practitioners who completed the training registered for the VAD portal (the platform for submitting VAD forms and applying for VAD permits). 33% of those practitioners are located outside of metropolitan Melbourne.
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.
Find out more about Australia's laws on VAD
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:
- What is voluntary assisted dying (VAD), euthanasia, assisted suicide and physician-assisted suicide.
- The law on VAD in Australia, including the law in Victoria and Western Australia, and international laws.
- Criminal law in relation to assisted dying.
- The intersection of assisted dying laws with the law on medical treatment decision-making and providing palliative medication.
To learn more visit the Euthanasia and Assisted Dying webpage .
Victoria’s new Guardianship laws commence
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 presumption of decision-making capacity, and a new definition of 'decision-making capacity'.
- Recognition of supported decision-making.
- Powers enabling the Victorian Civil and Administrative Tribunal (VCAT) to appoint a supportive guardian or administrator.
- New offences for guardians or administrators who dishonestly cause financial gain or cause loss to a represented person.
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.
New video for aged care on end of life law
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.
End of life law publication: Nurses’ knowledge of end of life law
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.
Recent developments: 17 February 2020
This week we provide updates on:
- Voluntary assisted dying: Update on laws in Western Australia and Tasmania
- Australian law on organ and tissue donation from deceased donors
- New publication on voluntary assisted dying
- End of Life Law for Clinicians accredited by RACGP and ACRRM
Voluntary assisted dying: Update on laws in Western Australia and Tasmania
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:
- Eligibility: A person will be eligible to access VAD if the person:
- is aged 18 or over;
- is an Australian citizen or permanent resident, and at the time of making a first request for VAD was ordinarily resident in Western Australia for at least 12 months;
- is diagnosed with at least 1 disease, illness or medical condition that:
- is advanced, progressive and will cause death;
- will, on the balance of probabilities, cause death within 6 months (or, in the case of a neurodegenerative disease, illness or condition, within 12 months); and
- is causing suffering to the person that cannot be relieved in a manner that the person considers tolerable;
- has decision-making capacity for VAD;
- is acting voluntarily and without coercion; and
- has an enduring request for VAD.
- Requesting VAD: The person will need to make at least three separate requests for VAD. Their eligibility will be independently assessed by two medical practitioners.
- Administration: The person will decide whether to self-administer the VAD substance, or whether it is to be administered by a practitioner (an eligible medical practitioner or nurse practitioner).
- Conscientious objection: Health practitioners with a conscientious objection to VAD will have the right to choose not to participate. A practitioner with a conscientious objection will need to immediately inform the person that they refuse the request, and provide the person with approved information.
- Discussing VAD: A health worker will be able to provide information about VAD to another person only on that person’s request. Health workers will be prohibited from initiating a discussion about or suggesting VAD unless they are a medical practitioner or nurse practitioner and provide information about treatment options and outcomes to the person.
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.
Australian law on organ and tissue donation from deceased donors
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:
- When deceased donation can occur.
- How a person can become a deceased donor.
- Who needs to agree before removal of tissue for donation can occur.
- The role of the deceased’s family in organ and tissue donation.
- What happens if there are differing views about whether or not donation should occur.
There is also a section exploring Australian law relating to posthumous reproduction. To learn more visit the Organ donation webpage.
New publication on voluntary assisted dying
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.
End of Life Law for Clinicians online modules accredited by RACGP and ACRRM
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..
Recent developments: 29 November 2019
This week we provide updates on:
- New Zealand public to vote on introducing assisted dying laws
- Emergency medical treatment: New legal resources for aged care
- New end of life law publications
- End-of-Life Law and Policy in Canada
New Zealand public to vote on introducing assisted dying laws
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:
- 18 years of over;
- a NZ citizen or permanent resident;
- suffering from a terminal illness that is likely to end the person’s life within 6 months;
- in an advanced state of irreversible decline in physical capability;
- experiencing unbearable suffering that cannot be relieved in a manner that the person considers tolerable; and
- competent to make an informed decision about assisted dying.
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.
Emergency medical treatment: New legal resources for aged care
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.
New end of life law publications
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”.
End-of-Life Law and Policy in Canada
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:
- whether MAiD (medical assistance in dying) is legal in Canada,
- who decides when to stop potentially life-sustaining treatment,
- the legal status of voluntary stopping eating and drinking, and voluntary stopping personal care, and
- the law on palliative care practices, including palliative sedation.
For further information and resources visit End-of-Life Law and Policy in Canada.
Recent developments: 11 November 2019
Missed the End of Life Law for Clinicians webinar? Watch it here!
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.
Futile or non-beneficial treatment: New legal resources for aged care
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.
Developments in assisted dying laws: Australia and Canada
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.
Recent developments: 3 October 2019
FINAL REMINDER: End of Life Law for Clinicians Webinar: Wednesday 9 October 2019
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
- QLD: 6:30pm - 8:00pm
- NSW, VIC, ACT & TAS: 7:30pm - 9:00pm
- SA: 7:00pm - 8:30pm
- NT: 6:00pm - 7:30pm
- WA: 4:30pm - 6:00pm
Registration
To register visit our registration page. RSVPs close Monday 7 October 2019.
Update on Western Australia's Voluntary Assisted Dying Bill
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
New publications: Voluntary Assisted Dying
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:
- Whether the Government permit required in Victoria prior to providing voluntary assisted dying is defensible
- Whether the Victorian preference for self-administration over practitioner administration is sound
- The need for transparency about how voluntary assisted dying systems operate including research.
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.
Recent developments: 30 August 2019
INVITATION: End of Life Law for Clinicians Webinar
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
- QLD: 6:30pm - 8:00pm
- NSW, VIC, ACT & TAS: 7:30pm - 9:00pm
- SA: 7:00pm - 8:30pm
- NT: 6:00pm - 7:30pm
- WA: 4:30pm - 6:00pm
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:
- Capacity and consent to medical treatment;
- Withholding and withdrawing life-sustaining medical treatment;
- Advance Care Directives;
- Substitute decision-making;
- Providing palliative medication;
- Futile or non-beneficial treatment; and
- Emergency treatment.
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
Recent developments: 22 August 2019
Western Australia's Voluntary Assisted Dying Bill
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
Recent developments: 1 August 2019
This week we provide updates on:
- New resource to support palliative care delivery: palliMEDS app
- Amendments to South Australia’s Advance Care Directives law where a person attempts to commit suicide
- New end of life legal resources for health professionals working in aged care
- Western Australia’s Ministerial Expert Panel on Voluntary Assisted Dying: Final Report
New resource to support palliative care delivery: palliMEDS app
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.
Amendments to SA’s Advance Care Directives law where a person attempts to commit suicide
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.
New end of life legal resources for health professionals working in aged care
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: Final Report
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:
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.
Recent developments: 19 June 2019
This week we provide an update on the commencement of Victoria's Voluntary Assisted Dying laws.
Voluntary assisted dying commences in Victoria
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:
- Ben White, Eliana Close and Lindy Willmott, We don’t know all the details of how voluntary assisted dying will work yet – but the system is ready, The Conversation, 6 June 2018.
- Ben White, Eliana Close and Lindy Willmott, Victoria’s voluntary assisted dying law: Clinical implementation as the next challenge. (2019) Medical Journal of Australia, 210(5), 207-209.
- Palliative Care Australia, Voluntary Assisted Dying in Australia: Guiding principles for those providing care to people living with a life-limiting illness, June 2019.
- Victoria Health, Voluntary Assisted Dying, 2019.
- Andrew McGee, Kelly Purser, Christopher Stackpoole et al, Informing the euthanasia debate: Perceptions of Australian politicians. (2018) University of New South Wales Law Journal, 41(4),1368-1417.
- Ben White and Lindy Willmott, Future of assisted dying reform in Australia. (2018) Australian Health Review, 42, 16-620.
- End of Life Law in Australia, Overview of end of life law in Australia factsheet, 2018.
- Lindy Willmott, Ben White, Christopher Stackpoole et al, (Failed) voluntary euthanasia law reform in Australia: Two decades of trends, models and politics. (2016) University of New South Wales Law Journal, 39(1), 1-46.
Recent developments: 7 June 2019
This week we provide updates on:
- End of Life Law for Clinicians online modules accredited by ACRRM
- New Guardianship laws for Victoria
- New article: A perfect storm: Fear of litigation for end of life care
End of Life Law for Clinicians online modules accredited by ACRRM
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.
New Guardianship laws for Victoria
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:
- A presumption of decision-making capacity, and a new definition of 'decision-making capacity'.
- Recognition of supported decision-making.
- Powers enabling the Victorian Civil and Administrative Tribunal (VCAT) to appoint a supportive guardian or administrator.
- New offences for guardians or administrators who dishonestly cause financial gain or cause loss to a represented person.
- Improvements to VCAT processes when appointing guardians and administrators.
- Amendments to improve the operations of the Office of the Public Advocate Victoria.
- New dispute resolution processes for guardians and administrators.
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.
New article: A perfect storm: Fear of litigation for end of life care
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.
Recent developments: 9 May 2019
This week we provide updates on:
- End of Life Law for Clinicians now accredited by RACGP
- Prevalence of Advance Care Directives in Australia: Recent research
- New survey about Victorian doctors' end-of-life decision-making
End of Life Law for Clinicians online modules accredited by RACGP
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.
Prevalence of Advance Care Directives in Australia: Recent research
Two recent scholarly articles report on the prevalence of Advance Care Directives in Australia:
- Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: multicentre audit study, BMJ Open (2019): Dr Karen Detering and colleagues examined the prevalence and correlates of Advance Care Directives (ACDs) among Australians aged 65 and over accessing health and aged care services. The study involved a prospective multicentre audit of health records (from general practice, hospitals and RACFs) and a self-report survey of a subset of people whose records were audited. Of the 2,285 records examined, 30% of people had ACDs accessible, while 20% had other Advance Care Planning documentation. A total of half of the study's participants therefore had some form of future care planning documentation. Factors associated with completion were greater functional impairment and being in an RACF or hospital. Overall, approximately 30% of older Australians had at least one ACD documented in their health record. The majority of these were non-statutory documents.
- Prevalence of Advance Care Directives in the community: A telephone survey of three Australian States, Internal Medicine Journal (2019): Prof Ben White and colleagues explored the prevalence among the broader community (sample of 1175) of instructional ACDs (i.e. where the person details their decisions or goals of care for future treatment) and appointing ACDs (i.e. Directives appointing a substitute decision-maker) in New South Wales, Victoria and Queensland. Factors associated with completion of these documents were also examined. The overall response rate was 33%. Six per cent of respondents reported completing an instructional ACD while 12% reported completing an appointing ACD. Female gender, higher educational level, personal experience of a major health scare and being widowed were significant predictors of completing an instructional ACD. Older age, higher educational level and being widowed were significant predictors of completing an appointing ACD.
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.
New survey about Victorian doctors’ end-of-life decision-making
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.
Recent developments: 1 April 2019
This week we provide updates on:
- National Advance Care Planning Week 2019
- The Advance Project: Supporting a team-based approach to initiating Advance Care Planning and palliative care in General Practice
- Submissions invited: Western Australia voluntary assisted dying legislation
- ACT releases End of Life Choices Inquiry report
National Advance Care Planning Week 2019
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 ProjectTM: Supporting a team-based approach to initiating Advance Care Planning and palliative care in General Practice
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:
- A practical toolkit of resources for GPs, nurses, practice managers, patients and carers.
- Online training modules individually tailored to the different roles and learning needs of GPs, nurses and practice managers.
- Tele-Mentoring from an experienced palliative care nurse.
- Support for implementing the resources into clinical practice.
The training modules explain how to use these resources in every day clinical practice. The training will enable GPs and nurses to:
- Sensitively promote awareness of advance care planning with older and/or chronically ill adults.
- Identify patients who may be at risk of deteriorating and dying.
- Assess these patients’ symptoms, important questions and concerns and identify their carers’ concerns.
- Identify patients who might most benefit from referral to a specialist palliative care services.
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
Submissions invited: Western Australia voluntary assisted dying legislation
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.
ACT releases End of Life Choices Inquiry report
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.
Recent developments: 28 February 2019
This week we provide updates on:
- Submissions invited: Queensland Inquiry into aged care, end-of-life and palliative care and voluntary assisted dying
- Victoria's Voluntary Assisted Dying law: Clinical implementation as the next challenge: New article
- National Palliative Care Strategy 2018 released
Submissions invited: Queensland Inquiry into aged care, end-of-life and palliative care and voluntary assisted dying
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:
- The delivery of aged care, end-of-life and palliative care in Queensland across the health and ageing service systems; and
- Queensland community and relevant health practitioners’ views on the desirability of supporting voluntary assisted dying, including provisions for it being legislated in Queensland and any necessary safeguards to protect vulnerable persons.
In undertaking the inquiry, the committee should consider:
- in relation to aged care, the terms of reference and submissions made to the Australian Government’s Royal Commission into the Quality and Safety of Aged Care and, in recognising the Commission will occur in parallel, how to proactively work with the Commission to ensure an appropriate exchange of information to inform the conduct of the inquiry;
- outcomes of recent reviews and work including Queensland Health’s Palliative Care Services Review; and
- the current legal framework, relevant reports and materials in other Australian states and territories and overseas jurisdictions, including the Victorian Government’s Inquiry into end-of-life choices, Voluntary Assisted Dying Act 2017 (Vic) and implementation of the associated reforms.
The Committee’s reporting deadline is 30 November 2019.
Victoria's Voluntary Assisted Dying law: Clinical implementation as the next challenge: New article
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.
National Palliative Care Strategy 2018 released
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:
- Palliative care is person-centred care
- Death is a part of life
- Carers are valued and receive the care they need
- Care is accessible
- Everyone has a role to play in palliative care
- Care is high quality and evidence-based.
It also contains seven goal areas:
- Understanding: People understand the benefits of palliative care, know where and how to access services, and are involved in decisions about their own care.
- Capability: Knowledge and practice of palliative care is embedded in all care settings.
- Access and choice: People affected by life-limiting illnesses receive care that matches their needs and preferences.
- Collaboration: Everyone works together to create a consistent experience of palliative care across care settings.
- Investment: A skilled workforce and systems are in place to deliver palliative care in any setting.
- Data and evidence: Robust national data and a strong research agenda strengthen and improve palliative care.
- Accountability: National governance of this Strategy drives action.
The strategy will be implemented over the next five years and will be guided bu an Implementation Plan.
Recent developments: 14 February 2019
This week we provide updates on:
- Providing Palliative Medication at the end of life: ELDAC blog article
- New End of Life Essentials modules for health professionals
Providing Palliative Medication at the end of life
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:
- There are very few instances in Australia where the provision of medication at end of life has been scrutinised by the courts and tribunals. This suggests that very few health professionals who care for people at the end of life are likely to experience formal review of their practice resulting from provision of pain and symptom medication.
- Even if a health professional’s conduct is examined, if they are providing treatment in accordance with good clinical practice, they need not be concerned. If the medication has been prescribed and administered in accordance with the accepted standards of clinical practice, no further scrutiny of a health professional is likely.
- In the very rare case that criminal charges are being considered, the doctrine of double effect protects a health professional by providing a defence against charges, so long as his or her intention in providing the medication was to relieve pain rather than end the person’s life.
- Regulatory bodies focus on improving the provision of care at the systems level to avoid future issues, rather than blaming individual health professionals.
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.
New End of Life Essentials modules for health professionals
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:
- End-of-life care in Emergency Departments
- Paediatric end-of-life care
- End-of-life care in chronic complex illness
- Imminent death – how to respond
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
Recent developments: 31 January 2019
This week we provide updates on:
- End of Life Law for Clinicians: A new training program to support clinical practice
- New webpage: Law on capacity and consent to treatment
End of Life Law for Clinicians: A new training program to support clinical practice
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:
- 10 free online training modules on end of life law (from 31 January 2019), and
- 22 training workshops across Australia (2019 – early 2020).
Topics addressed include:
- The role of law in end of life care
- Capacity and consent to medical treatment
- Withholding and withdrawing life-sustaining medical treatment
- Advance Care Planning and Advance Care Directives
- Substitute decision-making for medical treatment
- Providing palliative medication
- Children and end of life decision-making
- Futile or non-beneficial treatment
- Emergency treatment for adults
- Managing conflict.
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 .
New webpage: Law on capacity and consent to treatment
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.
Recent developments: 20 December 2018
This week we provide updates on:
Reform of Tasmanian Guardianship laws recommended: Final review report
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 introduction of a supported decision-making framework, with guardianship and administration a last resort.
- introducing statutory Advance Care Directives. It is recommended the Act not preclude children with decision-making capacity from making an Advance Care Directive.
- that the 'best interests' test be removed, and that decisions about a person's life be based upon their views, wishes, preferences and rights.
- changes to terminology, including that the term 'decision-making ability' be introduced in relation to a person's ability to make decisions or give consent to medical or dental treatment.
The report is currently being considered by the Tasmanian Government.
Informing the Euthanasia Debate: Perceptions of Australian Politicians: new article
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:
- Politicians’ personal views on euthanasia should not drive the debate.
- Issues of public concern, such as the impact on vulnerable people, should instead be at the forefront. Parliament’s role is to protect the vulnerable if laws are changed.
- If legalised, individuals are free to reject euthanasia as an option for themselves based on their own personal beliefs.
- Conscience votes on euthanasia are not optimal, but may remain the only way to decide the issue.
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.
Recent developments: 29 November 2018
The future of assisted dying reform in Australia: new article
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.
Recent developments: 22 November 2018
This week we provide updates on:
Terms of reference announced: Queensland Inquiry into Aged Care, End-of-Life and Palliative Care
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:
- the delivery of aged care, end-of-life and palliative care in Queensland across the health and ageing service systems; and
- Queensland community and relevant health practitioners’ views on the desirability of supporting voluntary assisted dying, including provisions for it being legislated in Queensland and any necessary safeguards to protect vulnerable persons.
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.
Voluntary Assisted Dying Bill to be introduced in Western Australia
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".
Recent development: 1 November 2018
New articles: Palliative care at the end of life, and Charlie Gard
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.
Recent developments: 8 October 2018
This week we provide updates on:
End of life law in aged care practice
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:
- decide whether to follow a person’s Advance Care Directive;
- identify the substitute decision-maker for a person who lacks capacity;
- determine the appropriate level of pain and symptom relief that can be given to a person; or
- decide whether or not to provide emergency treatment, or transfer a person to hospital.
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:
- Help to manage difficult situations that arise in practice. A common example is uncertainty about whether it is lawful to provide palliative medication to a person for pain and symptom relief. Knowing the law can help health professionals and aged care workers to understand what action is allowed, and enables them to provide appropriate care.
- Reduce legal risk. Better legal knowledge can help health professionals and aged care workers to act lawfully, and reduce the risk of criminal or civil liability.
- Improve communication with individuals, their families and substitute decision-makers. Disputes about treatment decisions can often arise because of different understandings about the law.
- Enhance health professionals’ and workers’ confidence and ability to support people receiving aged care, their families, or colleagues where legal issues arise. An example is a resident seeking an aged care worker’s help to undertake Advance Care Planning, or a family seeking information about making decisions regarding care or treatment for a family member.
- Deliver high quality, appropriate care when legal situations arise.
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.
Still time to submit abstracts: 2019 international end of life conferences
3rd International Conference on End of Life Law, Ethics Policy and Practice: Ghent, Belgium, 7-9 March 2019
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:
- palliative sedation
- voluntary stopping eating & drinking
- withholding & withdrawing life-sustaining treatment
- medical assistance in dying/euthanasia
- wishes to hasten death
- vulnerable groups (e.g. psychiatry, dementia, minors,
- homeless, prisoners, minorities)
- advance care planning & advance directives/requests
- (access to) palliative care
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.
7th Advance Care Planning International Conference, 13-16 March 2019
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
Assisted Dying and Palliative Care: ACHLR 6th Annual Public Oration. Now on YouTube
(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.
Recent developments: 2 October 2018
This week we provide updates on:
Voluntary Assisted Dying regulations released in Victoria
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 Victorian Health Minister will have 3 days to decide an application for a voluntary assisted dying permit, and
- a voluntary assisted dying substance must be stored securely in a lock box that meets particular specifications.
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.
New factsheets on end of life law released: ELDAC Legal Toolkit
End of Life Directions for Aged Care (ELDAC) has released new Legal Toolkit factsheets, myth busters and case studies on the following topics:
- End of life law in Australia: An overview for the aged care sector
- Capacity and consent to medical treatment
- Emergency medical treatment
- Managing disputes about medical treatment decision-making.
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 announces inquiry into end of life care
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).
Recent developments: 27 August 2018
This week we provide updates on:
Western Australian Joint Select Committee recommends introduction of voluntary assisted dying laws
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.
New South Wales Law Reform Commission releases final report into Guardianship Act review
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 introduction of formal supported decision-making arrangements in New South Wales.
- A new Assisted Decision-Making Act to provide a framework for both supported decision-making and substitute decision-making. The new legislation would replace the Guardianship Act and the enduring power of attorney provisions in the Powers of Attorney Act 2003 (NSW).
- Changes to the existing terminology used for substitute decision-makers, including the term 'representative' to replace 'guardian' and 'enduring representative' to replace 'enduring guardian'.
- A new, consistent definition of 'decision-making ability' (capacity).
- Statutory recognition of Advance Care Directives (while preserving existing common law requirements).
- Not regulating the use of restrictive practices in the disability sector.
The final report has been tabled in the New South Wales Parliament.
Invitation: ACHLR 6th Annual Public Oration: Professor Luc Deliens
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
Recent developments: 7 August 2018
This week we provide updates on:
- New QUT research positions in end of life law: Apply by 23 August 2018
- Be part of the National Advance Care Directive Prevalence Study
New QUT research positions in end of life law: Apply by 23 August 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.
Be part of the National Advance Care Directive Prevalence Study
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.
Recent developments: 26 July 2018
This week we provide updates on:
Final report released: Withholding and withdrawing life-sustaining medical treatment from adults who lack capacity: The role of law in medical practice
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
- There were mixed views about the role of this area of law in medical practice.
- While there were concerns about how long resolving legal disputes took, there was strong agreement that law has a place in medical practice and decision-making.
- Respondents also broadly supported the need to know and follow the law, and most wanted to learn more about this area of law.
- Palliative Care specialists and Geriatricians had significantly more positive attitudes to the role of law in this area of medical practice than did the other specialists.
Knowledge of Law
- There are significant knowledge gaps about this area of law with a mean knowledge score in the survey questions of 3.26 out of 7.
- Palliative Care specialists and Geriatricians had better legal knowledge than did the other specialists.
- Self-assessment of legal knowledge by specialists broadly correlated with levels of actual knowledge.
- Knowledge scores did not vary significantly according to undergraduate or immediate postgraduate training, but continuing professional development (CPD) training, particularly if recent, increased knowledge.
Following the Law
- Only 32% of specialists’ decisions followed the law in a hypothetical case scenario in the survey. Specialists gave more weight to patient-related and clinical factors than legal compliance.
- More legally knowledgeable specialists were more likely to follow the law in this scenario. But the reasons given for decisions suggest that law was not the driving factor for this cohort of specialists. Ethical considerations – which differ from, but often align with, law – may be the more important influence on this clinical decision-making.
Project recommendations
- Steps should be taken to simplify and harmonise the law across Australia.
- Improved training, education and resources are needed to support doctors' legal knowledge in this area. Teaching of law should be strengthened across all stages of medical education to ensure that specialists have up-to-date knowledge. Given its effectiveness in enhancing legal knowledge, CPD training is particularly needed.
- This training, education and resources should go beyond just supporting improved legal knowledge. It should also address the role that law plays in medicine (and society), the rationale behind the law and the benefits for specialists and their patients of knowing and following law.
Publications
A full list of publications from this study is available here. To access publications electronically, visit the project web page.
Invitations: International end of life conferences 2019
3rd International Conference on End of Life Law, Ethics Policy and Practice: Ghent, Belgium, 7-9 March 2019
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:
- palliative sedation
- voluntary stopping eating & drinking
- withholding & withdrawing life-sustaining treatment
- medical assistance in dying/euthanasia
- wishes to hasten death
- vulnerable groups (e.g. psychiatry, dementia, minors,
- homeless, prisoners, minorities)
- advance care planning & advance directives/requests
- (access to) palliative care
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 .
7th Advance Care Planning International Conference, 13-16 March 2019
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
Recent developments: 18 June 2018
This week we provide updates on:
End of Life Directions for Aged Care launch
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.
Grant awarded to QUT to investigate Reducing Non-Beneficial Treatment at the End-of-Life
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:
- Carter, Hannah, Winch, Sarah, Barnett, Adrian et al. (2017) Incidence, duration and cost of futile treatment in end-of-life hospital admissions to three Australian public-sector tertiary hospitals: A retrospective multicentre cohort study. BMJ Open, 7(10).
- White, Ben, Willmott, Lindy, Close, Eliana et al, (2016). What does “futility” mean? An empirical study of doctors’ perceptions. Medical Journal of Australia, 204(8), pp. 318.e1-318.e5.
- Willmott, Lindy, White, Ben, Gallois, Cindy et al, (2016) Reasons doctors provide futile treatment at the end of life: A qualitative study. Journal of Medical Ethics, 42, pp. 496-503.
- Willmott, Lindy, White, Ben, Close, Eliana et al, (2016). Futility and the law: Knowledge, practice and attitudes of doctors in end of life care. QUT Law Review, 16(1), pp. 54-75.
Progress on Victoria’s Guardianship and Administration Bill 2018
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:
- A new definition of 'decision-making capacity'.
- Recognition of supported decision-making, and powers for the Victorian Civil and Administrative Tribunal (VCAT) to appoint a supportive guardian or administrator.
- Improvements to VCAT processes when appointing guardians and administrators.
- Amendments to improve the operations of the Office of the Public Advocate Victoria.
- New dispute resolution processes for guardians and administrators.
The Bill is awaiting further debate by the Legislative Council.
My Health Record supports access to Advance Care Planning and Advance Care Directives information
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.
Western Australia End-of Life and Palliative Care Strategy launched
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.
Recent developments: 12 April 2018
This week we provide updates on:
End of Life Directions for Aged Care website launched: Legal Toolkit now available
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.
Updated Victorian information on End of Life Law in Australia: New medical treatment laws commence in Victoria
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
- New statutory Advance Care Directives in Victoria, which enable individuals to make future medical treatment decisions (replacing Refusal of Treatment Certificates).
- The difference between Instructional Directives and Values Directives.
- The recognition of common law Advance Directives.
- Heath professional's obligations in relation to Advance Care Directives.
Stopping Treatment
- The introduction of supported decision-making, and how to appoint a support person.
- Medical treatment decision-makers, including who may be a decision-maker, and the types of medical treatment decisions they can make.
- The distinction between significant medical treatment and routine medical treatment.
- New powers of the Public Advocate Victoria.
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:
Guardianship and Administration Bill 2018 introduced in Victoria
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:
- A new definition of 'decision-making capacity'.
- Recognition of supported decision-making, and powers for the Victorian Civil and Administrative Tribunal (VCAT) to appoint a supportive guardian or administrator.
- Improvements to VCAT processes when appointing guardians and administrators.
- Amendments to improve the operations of the Office of the Public Advocate Victoria.
- New dispute resolution processes for guardians and administrators.
The Victorian Parliament will debate the Bill in coming months.
Updated National Palliative Care Standards released
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:
- Standard 1: Initial and ongoing assessment incorporates the person’s physical, psychological, cultural, social and spiritual experiences and needs.
- Standard 2: The person, their family and carers work in partnership with the team to communicate, plan, set goals of care and support informed decisions about the care plan.
- Standard 3: The person’s family and carers needs are assessed and directly inform provision of appropriate support and guidance about their role.
- Standard 4:The provision of care is based on the assessed needs of the person, informed by evidence and is consistent with the values, goals and preferences of the person as documented in their care plan
- Standard 5: Care is integrated across the person’s experience to ensure seamless transitions within and between services.
- Standard 6: Families and carers have access to bereavement support services and are provided with information about loss and grief.
- Standard 7: The service has a philosophy, values, culture, structure and environment that supports the delivery of person-centred palliative care and end-of-life care.
- Standard 8: Services are engaged in quality improvement and research to improve service provision and development.
- Standard 9: Staff and volunteers are appropriately qualified, are engaged in continuing professional development and are supported in their roles
A brief overview and further information about the Standards are available from Palliative Care Australia.
Recent developments: 13 February 2018
Save the date! National Advance Care Planning Week 2018
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.
New Victorian medical treatment planning laws to take effect in March 2018
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:
- Enabling people to make medical treatment decisions, including consenting to or refusing treatment for future health conditions, in an advance care directive.
- Enabling medical treatment decisions to be made for a person who lacks capacity.
- Allowing the appointment of substitute decision-makers, and enabling supported decision-making.
- Removing medical treatment from the Powers of Attorney Act 2014 (Vic).
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.
New publications on end-of-life law: Doctors' Legal Compliance, and the cost of futile treatment
Academics at the Australian Centre for Health Law Research, with academic colleagues, have recently published the following new articles on end of life law:
- White, Ben., Willmott, Lindy, Cartwright, Colleen, Parker, Malcolm, Williams, Gail, & Davis, Juliet (2017) Comparing doctors’ legal compliance across three Australian states for decisions whether to withhold or withdraw life-sustaining medical treatment: does different law lead to different decisions? BMC Palliative Care, 16, p. 63.
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.
- Cartwright, Colleen, White, Ben., Willmott, Lindy, Parker, Malcolm, & Williams, Gail (2017) Australian doctors’ knowledge of and compliance with the law relating to end-of-life decisions: Implications for LGBTI patients. Culture, Health & Sexuality. (In Press)
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.
- Carter, Hannah E., Winch, Sarah, Barnett, Adrian G., Parker, Malcolm, Gallois, Cindy, Willmott, Lindy, et al. (2017) Incidence, duration and cost of futile treatment in end-of-life hospital admissions to three Australian public-sector tertiary hospitals: A retrospective multicentre cohort study. BMJ Open, 7(10), Article number-e017661.
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.
Recent developments: 20 December 2017
Victoria's Voluntary Assisted Dying Act 2017: An overview
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:
- be aged 18 or over;
- be an Australian citizen or permanent resident, ordinarily resident in Victoria, and, at the time of making a first request for VAD, have been resident in Victoria for at least 12 months;
- have decision-making capacity; and
- be diagnosed with a disease, illness or medical condition that is:
- incurable;
- advanced, progressive and will cause death;
- expected to cause death within six months; and
- causing suffering to the person that cannot be relieved in a manner that the person finds tolerable.
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:
- were not ordinarily resident in Victoria, or
- resident for at least 12 months prior to making the request, or
- has or does not have decision-making capacity to make a request
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:
- the person seeking VAD must be provided with information about: diagnosis and prognosis; available treatment options; palliative care options; and risks associated with injecting the lethal medication (i.e. death). The person must also be advised that s/he may decide at any time not to continue the VAD process.
- A Voluntary Assisted Dying Review Board will be established with monitoring, reporting, compliance, safety and research functions.
- Regulations governing the prescription, dispensing and disposal of VAD substances.
- Mandatory reporting requirements for health practitioners and employers where they believe another health practitioner's conduct breaches the Act e.g. offering to provide access to VAD in a way that contravenes the Act.
- Protection from criminal liability for persons who assist or facilitate a request for, or access to VAD.
- Protection from criminal and civil liability for practitioners who act in accordance with the Act.
- A range of new offences relating to non-compliance with or contravention of the Act.
- Statistical information about the people who access VAD (i.e. their disease, illness or condition, and their age at the time of their death from VAD) will be recorded and publically released (in a de-identified form).
Review
The Act will be reviewed by the Minister in its fifth year of operation.
ACT Parliament commences Inquiry into End of Life Choices
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:
- Current practices utilised in the medical community to assist a person to exercise their preference in managing the end of their life, including palliative care;
- ACT community views on the desirability of voluntary assisted dying being legislated in the ACT;
- Risks to individuals and the community associated with voluntary assisted dying and whether and how these can be managed;
- The applicability of voluntary assisted dying schemes operating in other jurisdictions to the ACT, particularly the Victorian scheme;
- The impact of Federal legislation on the ACT determining its own policy on voluntary assisted dying and the process for achieving change; and
- Any other relevant matter.
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.
Recent developments: 22 November 2017
UPDATE: Victorian Upper House passes Assisted Dying Bill, NSW Bill defeated by one vote
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 .
New South Wales Guardianship Review: Draft proposals released for consultation
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:
- That the Guardianship Act 1987 (NSW) and the enduring power of attorney provisions in the Powers of Attorney Act 2003 (NSW) be replaced by a new Assisted Decision-Making Act which would provide a framework for both supported and substitute decision-making.
- The introduction of new general principles (which reflect the UN Convention on the Rights of People with Disability)
- The term “decision-making ability” be adopted (instead of “capacity”).
- The term “disability” be removed as a precondition for a Tribunal order and from the legislation altogether.
- The new Act provide guidance on assessing a person’s decision-making ability.
- The introduction of two types of formal supported decision-making arrangements: personal support agreements and tribunal support orders.
- The introduction of two types of formal substitute decision-making arrangements as a last resort: enduring representation agreements (to replace the current arrangements for enduring guardians and enduring powers of attorney) and representation orders (to replace the current arrangements for guardians and financial managers).
- All agreements and orders to specify the particular personal, healthcare, financial and/or restrictive practices functions for a supporter or representative.
- New decision-making principles requiring representatives to give effect to a person’s will and preferences wherever possible, rather than a person’s “best interests”.
- Strengthened safeguards that apply to enduring representation agreements and representation orders.
- New advocacy and investigative functions, to be performed by a Public Advocate
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.
Recent developments: 27 October 2017
Assisted Dying Bill passed by the Victorian Legislative Assembly
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.
Recent developments: 29 September 2017
This week we provide updates on:
International conference on end-of-life attracts large number of world experts and international delegates
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.
Western Australian Parliament commences Inquiry into End of Life Choices
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:
- Assess the practices currently being utilised within the medical community to assist a person to exercise their preferences for the way they want to manage their end of life when experiencing chronic and/or terminal illnesses, including the role of palliative care;
- Review the current framework of legislation, proposed legislation and other relevant reports and materials in other Australian States and Territories and overseas jurisdictions;
- Consider what type of legislative change may be required, including an examination of any federal laws that may impact such legislation; and
- Examine the role of Advanced Health Directives, Enduring Power of Attorney and Enduring Power of Guardianship laws and the implications for individuals covered by these instruments in any proposed legislation.
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.
Recent developments: 22 September 2017
Voluntary Assisted Dying Bills introduced: Conscience votes imminent
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.
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:
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.
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.
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:
- ‘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
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 (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:
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 icel2@dal.ca
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
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.
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:
- 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.
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:
- 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.
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.
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 achlr@qut.edu.au
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:
- 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.
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 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
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.
For conference updates and further information please visit http://icel2halifax.ca/ or contact icel2@dal.ca
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
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
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:
- 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.
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:
- 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.
The Bill will likely be debated in 2017.
Medical Treatment Planning and Decisions Act 2016 passed by Victorian Parliament
The Medical Treatment Planning and Decisions Act 2016 (the Act) was assented to by the Victorian Parliament on 29 November 2016. The Act will:
- 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).
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.
New paper: Doctors' views on whether law has a role in medical practice at end of life
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.
New Australian Medical Association Position Statement: Euthanasia and Physician Assisted Suicide 2016
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:
- 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
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:
- 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).
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:
- 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.
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:
- 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.
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.
South Australian Voluntary Euthanasia Bill defeated
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.
Death with Dignity Bill 2016 (SA)
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:
- 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 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:
- 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.
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.
Medical assistance in dying in Canada
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:
- 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
A person is considered to have a grievous and irremediable medical condition if:
- 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
Key procedural safeguards include:
- 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
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/
20 year anniversary of Bob Dent's death: Euthanasia reform update
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.
Medical Treatment Planning and Decisions Bill 2016 introduced in Victoria
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:
- 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).
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.
New adult guardianship laws for the Northern Territory
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:
- 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.
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.
Death of first minor under Belgium's voluntary euthanasia laws
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.
Register now! ACHLR Annual Public Lecture: Professor Jocelyn Downie: 'The Legalization of Medical Assistance in Dying - Lessons from Canada', 19 October 2016, QUT, Brisbane.
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).
Event details
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.
Clarifying end-of-life law for doctors: MJA Insight article
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.
Are doctors who know the law more likely to follow it?
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.
Tasmanian Parliamentary Inquiry into Palliative Care
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.
National consultation: Paediatric end-of-life care consensus statement
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.
Save the date! 2nd International Conference on End of Life: Law, Ethics, Policy and Practice
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.
The Challenge of Futile Treatment
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.
California's End of Life Option Act
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.
Patient-Oncologist prognosis discordance study
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.
Politics in the Pub – 16 August – The Ethics of Euthanasia: Free event
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.
Call for submissions to inform development of new medical treatment decision-making and advance care planning legislation for Victoria
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.
Victorian Parliament tables End of Life Choices Inquiry Final Report (June 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.
QUT Law Review Special Issue End of Life Law, Ethics, Policy and Practice (March 2016)
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.
Voluntary Euthanasia Bill introduced in South Australia (February 2016)
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.