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Recent developments: 12 April 2018
This week we provide updates on:
- End of Life Directions for Aged Care website launched: Legal Toolkit now available
- Updated Victorian information on End of Life Law in Australia: New medical treatment laws commence in Victoria
- Guardianship and Administration Bill introduced in Victoria
- Updated National Palliative Care Standards released
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:
- Advance Care Directives
- Substitute Decision-Making
- Futile Treatment
- Medication for Pain and Symptom Relief
- Withholding and Withdrawing Life-Sustaining Medical Treatment.
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.
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.
Updated Victorian information on End of Life Law in Australia: New medical treatment laws commence in Victoria
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.
- 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:
- Children and end of life decision-making (in particular, the ability of a child to make an Advance Care Directive).
- Common law Advance Directives (in particular, recognition of common law Advance Directives in Victoria).
- Palliative care (in particular, the power of Victorian health professionals to provide palliative care without the consent of a medical treatment decision-maker).
- Adult Stopping Treatment (in particular, the discussion about supported decision-making).
- Taking Control (Office of the Public Advocate Victoria, 2018), which provides an overview of the new laws and relevant forms.
- A guide to the Medical Treatment Planning and Decisions Act (Vic) for health practitioners (Victoria Health, 2017)
- Significant treatment clinical guidelines for the Medical Treatment Planning and Decisions Act (Vic) for health practitioners (Victoria Health, 2017).
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
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
- 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).
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
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:
- 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).
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.
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).
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.
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
- Western Australian Parliament commences Inquiry into End of Life Choices
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
The Victorian Bill is likely to be debated when in mid October 2017. Further information about the Bill is detailed in its Explanatory Memorandum. The New South Wales Bill (and Explanatory Memorandum) will also be considered in October 2017. Both Bills will likely be the subject of a conscience vote by Victorian and New South Wales Members of Parliament.
In an article in this week’s The Conversation ACHLR academics explore the role of morals and empirical evidence in the assisted dying debate. The role of parliamentarians in such debates, and how a conscience vote is exercised is also discussed in a Journal of Law and Medicine article on assisted death and voluntary euthanasia.
Recommendations for a definition of advance care planning
A new Lancet Oncology article reports on a study undertaken by a taskforce of international end-of-life academics and clinicians to determine a consensus definition for advance care planning (ACP) and recommendations for its application. Currently there is no consensus about a definition of ACP. The researchers consulted 109 end-of-life experts and patient representatives globally (including 11 from Australia), who rated ACP definitions and 41 recommendations relating to ACP. From the feedback they developed the following ACP definitions:
Advance care planning enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate.
Advance care planning enables individuals who have decisional capacity to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and health-care providers. ACP addresses individuals’ concerns across the physical, psychological, social, and spiritual domains. It encourages individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account should they, at some point, be unable to make their own decisions
The definitions and recommendations will be disseminated and implemented for use in practice and policy-making, to enhance ACP policy, research and program development; improve benefits to patients and their quality of life; and ensure patient care is aligned to patients’ goals and preferences.
Recent developments: 15 September 2017
Voluntary Assisted Dying Bills to be introduced in Victorian and New South Wales Parliaments
Proposed legislation to permit voluntary assisted dying (VAD) in Victoria and New South Wales will be considered by the Victorian and New South Wales parliaments next week.
The Guardian this week reported that Victoria’s Voluntary Assisted Dying Bill will likely be considered by the Victorian Legislative Assembly next week, with a debate expected in October, while the Voluntary Assisted Dying Bill 2017 (NSW) will be introduced in the New South Wales Legislative Council on 21 September. The final versions of the Bills have not yet been publically released.
The Victorian Bill is expected to be based on the July 2017 final report of the Ministerial Advisory Panel on Victorian Voluntary Assisted Dying, which outlines 66 recommendations and 68 safeguards for the Victorian VAD framework. The final report proposes that assistance to die would be accessible to Victorians aged 18 years or over with decision-making capacity, who have an incurable disease, illness or medical condition likely to cause death within 12 months, which is causing suffering that cannot be relieved in a manner the person deems tolerable.
The draft NSW Bill (released for public consultation earlier this year) proposes that a person could receive assistance to end their life if he or she is at least 25 years old; residing in New South Wales; has a terminal illness which ‘in reasonable medical judgment’ will result in a patient’s death within 12 months; and experiences severe pain, suffering or physical incapacity to an extent unacceptable to the patient.
Further information about current Australian laws on euthanasia and assisted dying and related publications are available here, including commentary on recent attempts to legalise assisted dying in Australian parliaments.
Recent developments: 28 July 2017
Final decision: In the matter of Charlie Gard
In recent weeks we have followed the UK case of Charlie Gard, an 11 month old boy with the rare and incurable illness encephalomyopathic mitochondrial DNA depletion syndrome. This case has focused on several legal issues including parental decision-making for a child at the end of life; a child’s best interests; and provision of futile treatment.
Since birth Charlie has been on life support and in intensive care, with virtually no prospect of improvement in his condition. Charlie’s parents wished to transport Charlie to the US to undergo experimental treatment, arguing it was in Charlie’s best interests to receive further treatment. Charlie’s treating hospital argued the proposed treatment would be futile, was not in his best interests, and would extend his pain and suffering. Earlier court orders permitted the hospital to withdraw artificial ventilation so that Charlie could die. Charlie’s parents appealed this decision to various courts, most recently the UK High Court on the basis of new medical evidence.
Earlier this week Charlie’s parents withdrew their appeal, following the results of recent medical tests which indicate no further treatment can assist Charlie. On Monday 24 July Mr Justice Francis of the UK High Court issued a judgment reaffirming his April 2017 declarations that it is in Charlie’s best interests for artificial ventilation to be withdrawn, and palliative care provided.
Further articles of interest about this case include:
- ‘The Moral of the Case of Charlie Gard: Giving dying patients experimental treatment … early’ by Julian Savulescu, Practical Ethics Blog, 5 July 2017.
- ‘Charlie Gard – A different kind of medical futility conflict – no transfer allowed’ by Thaddeus Pope, Bioethics Blog, 13 June 2017.
- ‘Beyond resources: denying parental requests for futile treatment’ by Dominic Wilkinson, The Lancet (13 May 2017) 389: 1866-7.
- ‘The Ethics of Treatment for Charlie Gard: Resources for students/media’, Practical Ethics Blog, 17 July 2017.
- ‘Three ways the Charlie Gard case could affect future end-of-life cases globally’ by Neera Bhatia, Deakin University, The Conversation, 25 July 2017.
Recent developments: 21-24 July 2017
Commentary: Victoria may soon have assisted dying laws for terminally ill patients
In a recent article in The Conversation, Australian Centre for Health Law Research Directors Professors Ben White and Lindy Willmott provide preliminary analysis and commentary about the final report into Voluntary Assisted Dying legislation for Victoria, and whether these recommendations will become law.
Further information about current Australian laws on euthanasia and assisted dying and related publications are available here.
Final report on Victorian Voluntary Assisted Dying legislation released
The Ministerial Advisory Panel on Victorian Voluntary Assisted Dying (VAD) legislation today released its final report outlining 66 recommendations and 68 safeguards 'for the development of safe and compassionate voluntary assisted dying legislation'.
The report follows extensive recent public consultation on proposed VAD legislation, and the 2015-2016 Victorian Parliamentary Committee Inquiry into End of Life Choices. It is understood drafting of the legislation will commence shortly, with a Bill to be introduced in Victorian Parliament in coming months.
Recent developments: 14 July 2017
This week we provide updates on:
- Further case update: In the matter of Charlie Gard
- Journal of Medical Ethics Special Issue: Disorders of Consciousness
Further case update: In the matter of Charlie Gard
In our 16 June 2017 update we explored the UK case of Charlie Gard, an 11 month old infant with an incurable terminal illness. In June 2017 the British Supreme Court refused to grant permission for Charlie's parents to appeal previous court decisions which permit the hospital treating Charlie to withdraw treatment, and provide palliative care until his natural death. Charlie’s parents disagree that his treatment should be discontinued, and wish to transport Charlie to the United States to receive experimental treatment to improve his condition.
Charlie's parents recently appealed to the European Court of Human Rights ('the European Court'), arguing that the previous decisions breached the European Convention on Human Rights (the Convention) on the following grounds:
- That by withdrawing Charlie's treatment the hospital was preventing access to life-sustaining treatment (in the US) for Charlie, resulting in the unlawful deprivation of his liberty, in contravention of Article 2 (Right to life) and Article 5 (Right to liberty and security) of the Convention.
- The court decisions about Charlie constituted an unfair and disproportionate interference with their parental rights under Article 6 (Right to a fair trial) and Article 8 (Right to respect for private and family life) of the Convention.
In its decision of 27 June 2017, the European Court declared the parents' application inadmissable, and found that the UK courts had complied with the Convention. The decision enables the treating hospital to withdraw treatment, and allow him to die (with palliative care).
However, this week the case returned to the UK High Court following an application by the treating hospital on the basis of the availability of new evidence relating to potential treatment for Charlie. The High Court is continuing to hear further medical evidence. The hearing will resume this weekend.
Journal of Medical Ethics Special Issue: Disorders of Consciousness
This month’s special issue of the Journal of Medical Ethics (JME) explores significant legal, ethical, clinical and practical implications of decisions to withdraw clinically assisted nutrition and hydration (CANH) from patients who are in either a persistent vegetative state (PVS) or a minimally conscious state (MCS). The papers in this edition consider challenging questions including:
- What is PVS and MCS, and is it possible to categorise a patient as falling within one category rather than another?
- If possible, is it useful (clinically) or necessary (legally) to do so?
- What is the law that governs how we should treat such patients?
- What is meant by the term ‘best interests’ in the context of withdrawing CANH?
- Who should make the decision about withdrawing treatment.
Recent developments: 16 June 2017
This week we provide updates on:
- Case Update: In the matter of Charlie Gard
- Provisional conference program released: 2nd International Conference on End of Life, Law, Policy and Practice
Case Update: In the matter of Charlie Gard (8 June 2017, Supreme Court of the United Kingdom)
This UK case concerns the issues of futile treatment for an infant with a terminal medical condition, and parental rights to demand treatment.
10 month old Charlie Gard was born with the rare condition encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). His condition has progressively deteriorated since birth, and he cannot move his arms or legs or breathe without assistance. His brain function is severely affected and he requires a mechanical ventilator to stay alive.
Though they acknowledge that in his current condition Charlie has no quality of life, his parents asked the treating hospital to keep Charlie alive by artificial means to enable them to take him to the United States to undertake experimental treatment (deoxynucleoside therapy) to improve his condition. They have raised £1.3 million to fund the trip. The therapy has been attempted on animals with the same condition, but not humans.
The hospital wished to discontinue Charlie’s treatment, which would result in his death, to which Charlie’s parents disagreed. The hospital applied to the Family Division of the High Court seeking an order that it is lawful and in Charlie’s best interests for artificial ventilation to be withdrawn and only palliative care provided, and that it is in Charlie’s best interests not to undergo nucleoside therapy.
In his April 2017 judgment, Mr Justice Francis concluded that based on the medical evidence providing the therapy to Charlie would be futile and of no benefit. The legal test applied was whether further treatment would be in Charlie’s best interests, which the judge determined it would not. He ruled that the hospital could lawfully withdraw treatment and provide palliative care.
Charlie’s parents appealed to the Court of Appeal (Civil Division), which, in May 2017, dismissed the appeal and upheld the previous decision.
Charlie’s parents appealed to the Supreme Court, which delivered its judgment on June 8. The Court reaffirmed that parents are unable to insist upon treatment which is not in their child’s best interests, and that Charlie would experience significant harm and suffering if his life is ‘prolonged without any reasonable prospect of improvement’. They also noted the European Court of Human Right’s position that ‘…the child's rights must be the paramount consideration. If there is any conflict between them [and that of the parents] the child's interests must prevail’. The Court concluded the judge applied the correct legal test, and that his findings cannot be challenged on appeal. The Supreme Court refused to grant permission to appeal.
Charlie’s parents have since taken their case to the European Court of Human Rights, which has issued a stay until Monday 19 June requiring Charlie to receive treatment while they consider the case.
For further reading see:
- ‘Charlie Gard – A different kind of medical futility conflict – no transfer allowed’ by Thaddeus Pope
- ‘Frequently asked questions about the Charlie Gard court case’ from the Great Ormond Street Hospital for Children.
Provisional conference program released: 2nd International Conference on End of Life, Law, Policy and Practice, 13-15 September 2017
The provisional plenary program and concurrent session program are now available for the 2nd International Conference on End of Life: Law, Ethics, Policy and Practice (ICEL 2017) from 13 - 15 September 2017 in Halifax, Nova Scotia, Canada.
The plenary program features international leaders in the end-of-life field including: Jocelyn Downie (Professor of Law, Dalhousie University); Luc Deliens and Kenneth Chambaere (End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Belgium; Joseph Arvay (Counsel in the landmark Canadian physician-assisted dying case Carter v Carter); Emily Jackson (Professor of Law; London School of Economics and Political Science); Linda Ganzini (Professor of Psychiatry and Medicine at Oregon Health & Science University; Ben White and Lindy Willmott (Directors, Australian Centre for Health Law Research, QUT); Agnes van der Heide (Erasmus MC, University Medical Center Rotterdam, the Netherlands), and Bregje Onwuteaka-Philipsen (Professor, VU University Medical Center, the Netherlands).
Presenters will explore contemporary end-of-life issues and challenges relating to medical assistance in dying (euthanasia and assisted suicide); withholding and withdrawing potentially life-sustaining treatment (e.g. the “futile treatment” debate, artificial hydration and nutrition); palliative care (including palliative sedation); advance directives and advance care planning; next generation issues (e.g. medical assistance in dying in prisons, organ donation) and other end of life law, ethics, policy, and practice issues.
ICEL2017 is co-hosted by the Dalhousie Health Law Institute, Dalhousie University, Canada, the Australian Centre for Health Law Research, and the International Collaborative for End of Life Care Research, Europe. To register please visit the conference website. For conference updates and further information contact email@example.com
Recent developments: 26 May 2017
This week we provide updates on:
- Tasmanian Voluntary Assisted Dying Bill defeated in conscience vote
- Interim report on Victorian Voluntary Assisted Dying legislation released
- Invitation to lecture: What does the community know about the law at end of life? 13 June 2017
Tasmanian Voluntary Assisted Dying Bill defeated in conscience vote
The Tasmanian House of Assembly this week defeated the Voluntary Assisted Dying Bill 2016 ('the Bill') in a conscience vote (16 votes to 8). The Bill sought to legalise assisted dying for competent adults in the advanced stages of a serious incurable and irreversible medical condition (causing persistent, intolerable suffering), by way of lethal medication (either self-administered, or administered by the adult's primary doctor).
The defeated Bill was the third attempt to legalise assisted dying in Tasmania in the last decade.
Interim report on Victorian Voluntary Assisted Dying legislation released
An interim report on Voluntary Assisted Dying legislation for Victoria has been released. The report, produced by a Victorian Ministerial Advisory Panel, explores the key issues raised by stakeholders in a recent public consultation on proposed legislation to legalise assisted dying in Victoria. Feedback from the consultation will be used by the Panel to develop a final report with recommendations, to be released in July 2017.
Invitation to lecture: What does the community know about end-of-life law: 13 June 2017
In this presentation, Australian Centre for Health Law Research Directors Professors Ben White and Lindy Willmott will explore whether the Australian community knows about end-of-life law, and whether people use the law when making decisions about medical treatment. Their presentation will draw on the preliminary findings of a three-year Australian Research Council funded study which includes a review of online resources and a telephone survey of the community in Queensland, New South Wales and Victoria.
This is event is hosted by the Queensland Health Ethics and Law group .
Date: Tuesday 13 June 2017
Venue: Gibson Room, level 10, Z Block, QUT Gardens Point Campus, Brisbane.
Time: 6:30 - 8pm with refreshments from 6pm.
Entry is free and no RSVP is required.
Recent developments: 19 May 2017
This week we provide updates on:
- This National Palliative Care week, consider how well you know your legal rights about end-of-life decision-making
- New South Wales Voluntary Assisted Dying Bill 2017 released
- Advance Care Directives and Indigenous Australians
- Be at least 25 years old and reside in New South Wales,
- Have a terminal illness which ‘in reasonable medical judgment’ will result in a patient’s death within 12 months, and
- Be experiencing severe pain, suffering or physical incapacity to an extent unacceptable to the patient.
- Patients may self-administer a lethal substance to end their lives, or may be assisted by their medical practitioner or a nominated person.
- 48 hours must elapse between completion of the certificate of request, and the provision of assistance.
- Health providers may conscientiously object to being involved in assisting a person to die.
- A framework for judicial review by the Supreme Court, whereby a close relative of the patient may apply for an order that the request for voluntary assisted dying is not effective.
- New brochures for patients, families and health professionals: End of Life Law in Australia website
- New article on unilateral withholding and withdrawal of potentially life-sustaining treatment: Values-based law reform
- Voluntary Assisted Dying Bill: Victoria
- AMAQ Health Vision for Care at the End of Life
- How many people end their lives using euthanasia in places where it is legal?
- Support for doctors to recognise when patients are approaching the end of life, and to learn how to better communicate this to their patients, in order to avoid futile or burdensome treatment.
- Improved access to and use of advance care planning by:
- Delivering an education campaign for doctors and the public about advance care planning,
- Implementing, with Queensland Health, Queensland’s end-of-life care strategy, including developing guidelines to prepare doctors for end-of-life planning discussions with patients and families, and
- Using electronic systems (My Health Record and Queensland Health’s Integrated Electronic Medical Record) to improve access to advance care plans.
- Develop the skills of all health practitioners to ensure delivery of appropriate end-of-life care. It recognises that while general practitioners and non-specialists can and should deliver end-of-life care, specialist palliative care services should also be developed for complex problems, and to support non-specialist care.
This National Palliative Care week, consider how well you know your legal rights about end-of-life decision-making
By Ben White and Lindy Willmott, Directors, Australian Centre for Health Law Research
From 21-28 May 2017 is National Palliative Care week, a national week to raise awareness and understanding about palliative care throughout the community. This event offers an opportunity to reflect on how patients’ experiences at the end of life can be improved. While we are fortunate in Australia to have one of the highest-quality palliative care systems in the world, Australians still aren’t very good at planning for their end-of-life care. This includes talking and knowing about what the law says about advance care planning and end-of-life treatment.
Knowing the law at end of life is critical to support patient and family participation in decision-making. Law also provides the framework that recognises these decisions, for example, through making an advance directives or appointing an enduring power of attorney or guardian. Not knowing the law can put patients at risk, and result in medical treatment that is not wanted.
To further address these issues, academics at the Australian Centre for Health Law Research, with colleagues at the University of Queensland and the Cancer Councils of Victoria, Queensland and New South Wales, are currently undertaking a study which looks at whether patients and the broader community know the law and are aware of their legal rights and responsibilities at end of life.
As part of this study, the researchers reviewed existing online resources that patients, families or members of the community could access to learn more about the law of end-of-life decision-making. While there were some valuable resources available, there were also gaps in the information available. Further, some of the search terms members of the public are likely to use did not reach the websites that have the information they wanted.
The study on community knowledge of the law in this area includes interviewing terminally ill patients about their experiences in participating in end-of-life decision-making. The researchers are also interviewing family members who have been involved in medical decision-making for loved ones. Through this research, it is hoped to improve end-of-life decision-making and ensure that people can participate fully in these decisions. Those interested in participating in this research can contact Michele Ferguson (firstname.lastname@example.org or 07 3365 2505). The researchers are especially interested in speaking with people based in New South Wales and Victoria.
New South Wales Voluntary Assisted Dying Bill 2017 released
A consultation draft of the Voluntary Assisted Dying Bill 2017 (NSW) (‘the Bill’) has been released for public consultation by the New South Wales Parliamentary Working Group on Assisted Dying.
The Bill establishes a framework for physician-assisted dying, whereby people with a terminal illness can receive assistance from a medical practitioners to end their lives. To be eligible a patient must:
To receive assistance, eligible patients must be assessed by both a primary medical practitioner and secondary medical practitioner (who is a specialist), as well as an independent psychiatrist or psychologist, to confirm the patient has decision-making capacity, is of sound mind, and is making the decision freely and voluntarily.
Other key features of the Bill include:
The Bill is open for public consultation, with submissions due by Monday 17 July 2017. For further information or to make a submission contact email@example.com.
Advance Care Directives and Indigenous Australians
In a new article in the Medical Journal of Australia, Warren et al discuss the valuable role advance care directives can have for Indigenous Australians. They note advance directives are particularly important for the Indigenous population given the high rates of life-limiting conditions and disability they experience towards the end of life, and as a means of enabling Indigenous people to maintain their strong connection to land, family and community by dying at home. The authors explore the reasons why advance care planning is not commonly undertaken by Indigenous Australians, and strategies to improve uptake of advance care planning.
Recent developments: 28 April 2017
This week we provide updates on:
New brochures for patients, families and health professionals: End of Life Law in Australia
The Australian Centre for Heath Law Research has developed two new brochures for patients, families and the community, and health professionals, providing an overview of the End of Life Law in Australia website, and how it can support the community to know and better understand the law at end of life.
The brochures can be downloaded from the About this website page. To request hard copies, please contact firstname.lastname@example.org
Unilateral withholding and withdrawal of potentially life-sustaining treatment: Values-based law reform
In a new article for the Alberta Law Review, Professor Jocelyn Downie (Dalhousie Heath Law Institute, Dalhousie University, Canada; Adjunct Professor, Australian Centre for Heath Law Research) and Professors Lindy Willmott and Ben White (Australian Centre for Heath Law Research, Queensland University of Technology) explore the current practice of unilateral withholding and withdrawal of potentially life-sustaining treatment in the United Kingdom, Australia, New Zealand, the United States and Canada.
Using Canada as a case study, they propose a model for reform of law and policy shaped by the fundamental values of Canadian society: life, autonomy, equality, rule of law, distributive justice, procedural fairness, access to justice, conscience and humility.
Voluntary Assisted Dying Bill: Victoria
The Victorian Department of Health and Human Services recently concluded its public consultation seeking feedback on a voluntary assisted dying framework for Victoria.
The proposed framework would legalise physician-assisted dying in Victoria for adults with decision-making capacity, who are suffering from a serious and incurable condition, and are at the end of their life, provided they meet the proposed criteria. The framework is based on the recommendations of the Victorian Parliament Legislative Council Legal and Social Issues Committee from its 2016 final report arising from the End of Life Choices Inquiry.
The consultation follows the Victorian Government's appointment of a Ministerial Advisory Panel to develop assisted dying legislation, for introduction into Parliament in 2017. The Panel will issue an interim report in April 2017, and a final report in July 2017.
If legislation is introduced, Victoria will become the first Australia jurisdiction since the Northern Territory in 1997 to legalise assisted dying.
Recent developments: 27 March 2017
This week we provide updates on:
NSW Guardianship Review: New Question Papers released
The New South Wales Law Reform Commission has released three new Question Papers as part of its review of the Guardianship Act 1987 (NSW).
Question Paper 4 considers the safeguards and procedures that should be in the guardianship system.
Question Paper 5 considers the consent requirements for medical and dental treatment, and the use of restrictive practices.
Question Paper 6 considers the remaining issues that Question Papers 1-5 did not cover.
Submissions on Question Papers 4 - 6 close Friday 12 May 2017.
Previous Question Papers explored the preconditions to alternative decision-making arrangements, decision-making models, and the role of guardians and financial managers. Submissions on those papers have now closed.
For further information about the review and its Terms of Reference, visit the NSW Law Reform Commission.
Recent developments: 6 March 2017
This week we provide updates on:
Australian Medical Association Queensland Health Vision for Care at the End of Life
The Australian Medical Association Queensland (AMAQ) has released Part 5 of their Health Vision, which focuses on Care at the End of Life. It calls for Queensland to become a national leader in end-of-life care, and to ensure planning is undertaken early to enable future patient demand for palliative care to be met.
In addition to noting the need for greater funding for palliative care training and services, AMAQ has identified key steps it considers should be implemented to improve end-of-life care:
The AMAQ also urges the Queensland Government to achieve two targets by 2022:
- Ensure that palliative care in Queensland is meeting patient need, through initiatives including obtaining benchmark data, enhanced palliative care funding and improved services.
- That 50% of Queenslanders over 50 years of age have an advance care plan through strategies including:
- Clarifying the role of common law advance directives in Queensland,
- Creating more user-friendly advance health directive forms,
- Improving access to directives by utilising electronic systems,
- Undertaking public education initiatives,
- Implementing the Queensland Government’s Strategy for End-of-Life Care, and
- Discussing with the Federal Government the establishment of Medicare rebates to appropriately remunerate clinicians to undertake advance care planning with patients.
New article: How many people end their lives using euthanasia in places where it is legal?
In a recent article for The Conversation, Australian Centre for Health Law Research academic Dr Andrew McGee explored the issue of euthanasia and assisted suicide rates in countries where the practices are legal.
Dr McGee concluded ‘what is clear is that euthanasia is by no means a leading cause of death in countries where it is legal’, with research from various sources indicating the rates account for between 0.3% and 4.6% of all deaths in those jurisdictions.
Recent developments: 22 February 2017
This week we provide updates on:
- New ACQSHC National consensus statement on safe and high-quality paediatric end-of-life care
- Developments in regulation of medicinal use of cannabis
New ACSQHC National consensus statement on safe and high-quality paediatric end-of-life care
The Australian Commission on Safety and Quality in Health Care (ACSQHC) has released its National consensus statement on essential elements for safe and high-quality paediatric end-of-life care, to guide clinicians and others about recommended practices and essential elements for safe, high-quality end-of-life care for children in acute settings.
The paediatric Consensus Statement, adapted from the ACSQHC's National Consensus Statement on Essential elements for safe, high quality end of life care for adults, recognises that there are additional considerations, principles and actions required to provide optimal care to children at the end-of-life.
Developments in regulation of medicinal use of cannabis
The Australian Government has announced the establishment of an Australian Advisory Council on the Medicinal Use of Cannabis. The Council, to be chaired by Professor James Angus AO, will provide expert advice to the Government on
- implementation of the regulatory scheme allowing for the cultivation and manufacture of medicinal cannabis in Australia;
- the design of medical prescribing guidelines and the use of the Authorised Prescriber and Special Access Scheme mechanisms allowing for patient access; and
- the current state of medical evidence supporting the use of medicinal cannabis.
The Government has also this week announced it will enhance local supply of medicinal cannabis and relax importation laws to enable patients to access the medication faster. The changes will enable importation of medicinal cannabis products by approved providers from overseas until local production is able to meet demand.
Recent developments: 11 January 2017
This week we provide updates on:
- 2nd International Conference on End of Life, Law, Policy and Practice 2017: Registrations and Abstracts open
- New opt out organ donation laws for France
- NSW Health consultation on use of ante mortem (before death) interventions for organ donation
2nd International Conference on End of Life, Law, Policy and Practice 2017: Registrations and Abstracts open
The Dalhousie Health Law Institute, the Australian Centre for Health Law Research and the International Collaborative for End of Life Care Research warmly invite you to attend the 2nd International Conference on End of Life: Law, Ethics, Policy and Practice (ICEL 2017) from 13 – 15 September 2017 in Halifax, Nova Scotia, Canada.
This is a multidisciplinary, multinational conference, with presenting disciplines including, but not limited to, law, medicine, nursing, philosophy and bioethics, and representation spanning health and legal practitioners, academics, NGOs, and regulators and policy-makers.
To register and view the conference program please visit the conference website .
The call for abstracts is now open and will close on 15 February 2017. Abstracts are particularly welcomed within the following streams:
- Withholding and withdrawing potentially life-sustaining treatment (e.g. the “futile treatment” debate, artificial hydration and nutrition)
- Palliative sedation
- Advance directives and advance care planning
- Medical assistance in dying (euthanasia and assisted suicide)
- Other end of life law, ethics, policy, and practice issues.
France introduces opt out organ donation laws
France has introduced new ‘opt out’ organ donation laws, whereby it is presumed individuals have consented to organ and tissue donation unless they elect to opt out. Previously, medical professionals in France were guided by the deceased person’s wishes for or against donation, or relied on the decision of the deceased’s next of kin. Under the new laws, which took effect on 1 January 2017, those who wish to ‘opt out’ of donation must either join a national ‘refusal’ register or communicate their refusal, in writing or orally, to their next of kin.
France joins countries including Spain, Austria, Belgium, Singapore, Croatia, and Greece in introducing an opt out organ donation system. Australia has an ‘opt in’, informed consent model of donation, whereby an individual with decision-making capacity can provide informed consent (or register an objection) to donation on the Australian Organ Donor Register.
Submissions invited: NSW Health consultation on use of ante mortem (before death) interventions for organ donation
NSW Health has a released a discussion paper inviting submissions on the use of ante mortem (before death) interventions for organ donation. In NSW consent for organ donation after a person’s death is usually provided by:
- the individual prior to their death (i.e. by registering consent to donation on the Australian Organ Donor Register), or
- the individual’s family after death.
Prior to death an individual is able to consent to receiving treatments (ante mortem interventions) to improve the function of their donated organs, for the benefit of the person who will receive the organs. The discussion paper is seeking views on the use of ante mortem interventions, consent to interventions where an individual lacks capacity (by allowing the person’s next of kin to act as a substitute decision-maker), and potential safeguards. Submissions are due Monday 30 January 2017.
Recent developments: 19 December 2016
This week we provide updates on:
- Victorian Government’s response to End of Life Choices Inquiry final report
- New Position Statement on End-of-Life Care, and Issues Brief: Australian Healthcare & Hospitals Association
Victorian Government’s response to End of Life Choices Inquiry final report
The Victorian Government has released its formal response to the June 2016 final report from the Victorian Parliament Legal and Social Issues Committee’s (the Committee) Inquiry into End of Life Choices.
The Government’s response addresses the Committee’s 49 recommendations for improvements to advance care planning, palliative care, and end of life law, policy and practice in Victoria. The following is a synopsis of the Government’s response to some of the Committee’s key recommendations.
Advance care planning and end of life choices
The Victorian Government supports the Committee's recommendations for:
- Improvements to advance care planning including:
- Measures to support health services to prioritise implementation of advance care planning;
- Better reporting and data collection about advance care planning; and
- The development of an updated advance care directive form which allows patients to record their values and preferences.
- Measures to improve awareness and uptake of advance care planning, such as:
- Lobbying the Commonwealth Government to consider creating a Medicare Benefits Schedule (MBS) item number for advance care planning;
- Educating health professionals about using existing MBS item numbers for advance care planning;
- Introducing strategies in the Government’s end of life care framework to ensure that end of life discussions and planning occurs;
- Developing education campaigns, guidelines/resources and medical education for health practitioners to support advance care planning, end of life conversations and education; and
- Implementing a community awareness campaign to improve understanding of end of life choices and that the Victorian Government lobby for a national public awareness campaign.
Reforms to existing legislation relating to end of life care and treatment
The Victorian Government supported standardising the definition of ‘medical treatment’ across Victorian legislation, and enacting new legislation which would:
- Provide for instructional advance health directives (to replace refusal of treatment certificates);
- Enable refusal of consent to treatment in relation to future conditions; and
- Enable substitute decision-makers to refuse medical treatment in particular circumstances.
These recommendations have already been addressed through the recent introduction of the Medical Treatment Planning and Decisions Act 2016 (Vic).
Palliative care and palliative sedation
The Government supports the development of strategies to better integrate and improve access to palliative care services. It noted that many have already been addressed through the End of Life and Palliative Care Framework.
It supports in part recommendations to establish a taskforce to create appropriate guidelines for the administration of continuous palliative sedation (CPS), to address the current absence of data on that practice. It proposes that the Australian and New Zealand Society of Palliative Medicine review guidelines for sedation, which would be considered for implementation support.
The Government rejects the Committee's recommendation for reporting of cases of CPS to the Department of Health (for data collection and other reporting purposes), due to concerns about possible unintended consequences of monitoring, and the potential for more conservative use of medications that are used to manage symptoms but also cause sedation.
Legislation relating to the doctrine of double effect, withholding and withdrawing futile treatment and assisted dying
The Government is still reviewing the Committee’s recommendations that it enact legislation relating to:
- the doctrine of double effect, to strengthen legal protection for doctors providing end of life care, and
- the common law position on withholding or withdrawing futile treatment.
However, it notes the Inquiry report ‘… clearly identifies doctors’ lack of knowledge about the law in relation to end of life care and the impact it may be having on patient care’ and proposes to address this ‘… through a targeted information campaign for health practitioners’.
It is also reviewing the Committee’s proposal to introduce a legal framework and legislation which provides for assisted dying. However, the Victorian Premier recently announced the Government will introduce assisted dying legislation in the Victorian Parliament in the second half of 2017, and that it will be put to a conscience vote. A public discussion paper and targeted stakeholder consultation is planned for early 2017.
New Position Statement on End of Life Care and Issues Brief: Australian Healthcare & Hospitals Association
The Australian Healthcare & Hospitals Association (the AHHA) has released a new position statement on End of Life Care.
The position statement notes that end of life care should preserve dignity and relieve suffering, be accessible, enable individuals to choose where to die, provide ongoing information to individuals and families to enable informed choices about end of life care options, and be provided be health professionals trained to deliver high-quality, appropriate care.
In the position statement the AHHA also calls for:
- Support for advance care planning through uniform national legislative frameworks, as well as 'improved My Health record integration and connectivity to hospitals, primary care, community and aged care'.
- Education and public information campaigns to improve public awareness and engagement in issues relating to advance care planning, end of life care, and death and dying; and
- Reforms to palliative care services and care models to better respond to end of life needs, and to meet increasing demand. It notes such changes 'require a coordinated and integrated approach across primary, community, specialist and hospital care'.
The AHHA has also released an issues brief, through its Deeble Institute for Health Policy and Research, on Improving end-of-life care in Australia. The issues brief seeks to raise awareness end of life care issues, provides recommendations for improving end of life care and care services, and recommends how discussion of end of life issues can be generated among health consumers and across the health system.
Recent developments: 12 December 2016
This week we provide updates on:
- Assisted dying legislation in Victoria and Tasmania.
- Victoria's new Medical Treatment Planning and Decisions Act 2016
- New paper: Doctors' views on whether law has a role in medical practice at end of life.
Assisted dying legislation in Victoria and Tasmania
- It will apply only to adults with decision-making capacity, who are in the final weeks or months of their life,
- The patient's request for euthanasia must be repeated and enduring,
- The patient must have a serious and incurable condition that is causing enduring and unbearable suffering that can't be relieved,
- Two doctors must approve the the prescription of lethal medication, and a psychiatrist may also be involved if questions about the adult's capacity arise,
- The patient would be prescribed lethal medication, which would be taken by the patient themselves, rather than being directly administered to the patient by the doctor.
- It would be available to a competent adult,
- The adult must be in the advanced stages of a serious incurable and irreversible medical condition, which causes persistent, intolerable suffering which cannot be relieved by available medical treatment or palliative care, and for which there is no reasonable prospect of a permanent improvement in the person’s medical condition,
- Two medical practitioners must approve the prescription of assisted dying medication to the person, and
- The person may self-administer the assisted dying medication, or the primary medical practitioner may administer it.
Medical Treatment Planning and Decisions Act 2016 passed by Victorian Parliament
- enable people to make medical treatment decisions, including consenting to or refusing treatment for future health conditions, in an advance care directive;
- enable medical treatment decisions to be made for a person who lacks capacity;
- allow the appointment of substitute decision-makers, and enable supported decision-making;
- remove medical treatment from the Powers of Attorney Act 2014 (Vic) and
- repeal the Medical Treatment Act 1988 (Vic).
New paper: Doctors' views on whether law has a role in medical practice at end of life
New Australian Medical Association Position Statement: Euthanasia and Physician Assisted Suicide 2016
- Notes the AMA’s position on good quality end of life care and the relief of pain and suffering.
- Encourages governments to improve end of life care, including through adequately funding advance care planning and palliative care services, development of clear, nationally consistent laws which protect doctors providing quality end of life care, and increased development and resourcing of enhanced palliative care services to support health professionals and carers providing end of life care.
- Describes how doctors should respond to a patient’s request for euthanasia or physician assisted suicide.
- Clarifies that a doctor (acting in accordance with good medical practice) does not perform euthanasia or physician-assisted suicide by:
- not initiating or continuing life-prolonging measures, or
- administering treatment or performing other actions intended to relieve symptoms which may have a secondary consequence of hastening death.
Medicinal cannabis law reform in Australia
- Particular classes of specialist doctors, who may prescribe specified medicinal cannabis products to groups of patients with a specified condition or symptom (patient-class prescriber pathway), or
- General practitioners or medical specialists, who may apply to Queensland Health for approval to prescribe medicinal cannabis to a particular patient (single-patient prescriber pathway).
- a patient has tried all conventional treatments available and these have failed, OR
- the conventional treatment causes intolerable side effects, AND
- the doctor provides clinical evidence that a specific type of medicinal cannabis product is effective for the particular condition or symptoms.
- In New South Wales, the Poisons and Therapeutic Goods Amendment (designated Non-ARTG products) Regulation 2016 took effect in August 2016, allowing NSW Health to grant approvals to doctors to prescribe some cannabis-based medicinal products.
- In Tasmania, the State Government is establishing a Controlled Access Scheme to enable doctors to prescribe medicinal cannabis from 2017.
- In Western Australia and South Australia, medicinal cannabis will be available to some patients, as a result of the Therapeutic Goods Administration’s reclassification (from 1 November 2016) of cannabis-based products for medicinal or research purposes as Schedule 8 medicines (or controlled drugs).
- The Australian Capital Territory government is also working towards establishing a legal medicinal cannabis scheme.
South Australian Voluntary Euthanasia Bill defeated
Death with Dignity Bill 2016 (SA)
- The person is competent (i.e. has decision-making capacity),
- The person is suffering from a terminal medical condition which:
- Is causing him or her intolerable suffering; and
- No available medical treatment or palliative care will relieve the person’s suffering,
- Due to the terminal condition the person’s death is inevitable, and
- He or she has resided in South Australia for at least 12 months prior to making the request.
- A requirement the person requesting voluntary euthanasia be assessed by two independent medical practitioners and a psychiatrist.
- The request must be witnessed by two witnesses in the presence of a medical practitioner.
- 14 days must pass from the date the person was examined and assessed by a medical practitioner before the administration or self-administration of voluntary euthanasia can occur.
Medical assistance in dying in Canada
- eligible for health services funded by government in Canada (or would be but for minimum period of residence or waiting period)
- at least 18 years old
- capable of making decisions with respect to their health
- have made a voluntary request
- have given informed consent to receive medical assistance in dying after having been informed of means available to relieve suffering, including palliative care
- have a grievous and irremediable medical condition
- they have a serious and incurable illness, disease or disability
- they are in an advanced state of irreversible decline in capability
- that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and cannot be relieved under conditions that they consider acceptable
- their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining
- ten day waiting period between the day the request was signed and the day MAiD is provided (unless death or loss of capacity is imminent)
- reconfirmation of consent required immediately before providing MAiD
20 year anniversary of Bob Dent's death: Euthanasia reform update
Medical Treatment Planning and Decisions Bill 2016 introduced in Victoria
- enable people to make medical treatment decisions, including consenting to or refusing treatment, for future health conditions;
- enable medical treatment decisions to be made for a person who lacks capacity;
- allow the appointment of substitute decision-makers and enable supported decision-making; and
- repeal the Medical Treatment Act 1988 (Vic).
New adult guardianship laws for the Northern Territory
- provides a contemporary decision-making framework for the Northern Territory (similar to other Australian jurisdictions);
- introduces new guardianship principles;
- establishes an independent Office of the Public Guardian, and an independent statutory officer as the Public Guardian;
- transfers jurisdiction for guardianship matters from the Local Court to the Northern Territory Civil and Administrative Tribunal; and
- grants guardians greater authority to make health care decisions.
Death of first minor under Belgium's voluntary euthanasia laws
Case update: Application of a Local Health District; Re a Patient Fay NSWSC 624
Case update: Director Clinical Services, Child & Adolescent Health Services v Kiszko & Anor  FCWA 75
Register now! ACHLR Annual Public Lecture: Professor Jocelyn Downie: 'The Legalization of Medical Assistance in Dying - Lessons from Canada', 19 October 2016, QUT, Brisbane.
Clarifying end-of-life law for doctors: MJA Insight article
Are doctors who know the law more likely to follow it?
Tasmanian Parliamentary Inquiry into Palliative Care
National consultation: Paediatric end-of-life care consensus statement
Save the date! 2nd International Conference on End of Life: Law, Ethics, Policy and Practice
The Challenge of Futile Treatment
California's End of Life Option Act
Patient-Oncologist prognosis discordance study
Case update: Re: A (A Child)  EWCA Civ 759
A’s mother appealed to the Court of Appeal arguing that the High Court of Justice was wrong in finding that A was in pain, and gave insufficient weight to the prospect of improvement, and to the obligation to protect his life.
The Court of Appeal reiterated established UK law regarding the withdrawal of life-sustaining treatment and stated that decisions must be guided by the best interests of the patient at the particular time, considering welfare in the widest sense (Aintree University Hospital NHS Foundation Trust v James  UKSC 67;  AC 591); and that decisions are reached objectively and through the balancing of a range of best interest considerations (Re: NHS Trust v MB and Others  EWHC 507 (Fam);  2 FLR 319 per Holman J).