tag:theconversation.com,2011:/uk/topics/euthanasia-1538/articlesEuthanasia – The Conversation2024-02-22T01:22:51Ztag:theconversation.com,2011:article/2238632024-02-22T01:22:51Z2024-02-22T01:22:51ZVoluntary assisted dying is different to suicide. But federal laws conflate them and restrict access to telehealth<figure><img src="https://images.theconversation.com/files/576955/original/file-20240221-30-6rt3ul.jpg?ixlib=rb-1.1.0&rect=125%2C224%2C2869%2C1773&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/depressed-elderly-widow-sitting-on-her-191917208">Daxiao Productions/Shutterstock</a></span></figcaption></figure><p>Voluntary assisted dying is now lawful in every Australian state and will soon begin in the <a href="https://www.justice.act.gov.au/justice-programs-and-initiatives/voluntary-assisted-dying-laws-in-the-act">Australian Capital Territory</a>.</p>
<p>However, it’s illegal to discuss it via <a href="https://www.mbsonline.gov.au/internet/mbsonline/publishing.nsf/Content/Factsheet-Telehealth-Updates-April%202023">telehealth</a>. That means people who live in rural and remote areas, or those who can’t physically go to see a doctor, may not be able to access the scheme.</p>
<p>A federal private members bill, introduced to parliament last week, aims to change this. So what’s proposed and why is it needed?</p>
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<h2>What’s wrong with the current laws?</h2>
<p>Voluntary assisted dying doesn’t meet the definition of suicide under state laws. </p>
<p>But the Commonwealth Criminal Code <a href="https://www.aph.gov.au/About_Parliament/Parliamentary_departments/Parliamentary_Library/FlagPost/2023/August/Voluntary_Assisted_Dying_and_Telehealth#:%7E:text=Sections%20474.29A%20and%20474.29,material%20that%20counsels%20or%20incites">prohibits</a> the discussion or dissemination of suicide-related material electronically. </p>
<p>This opens doctors to the risk of criminal prosecution if they discuss voluntary assisted dying via telehealth.</p>
<p>Successive Commonwealth attorneys-general have failed to address the conflict between federal and state laws, despite persistent calls from state attorneys-general for necessary <a href="https://www.abc.net.au/news/2024-02-12/voluntary-assisted-dying-telehealth-ban-law-push/103456102">clarity</a>. </p>
<p>This eventually led to voluntary assistant dying doctor <a href="https://www.abc.net.au/news/2022-08-03/voluntary-assisted-dying-communication-laws-face-gp-legal-fight/101292042">Nicholas Carr</a> calling on the Federal Court of Australia to resolve this conflict. Carr sought a declaration to exclude voluntary assisted dying from the definition of suicide under the Criminal Code. </p>
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Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-begin-in-wa-this-week-but-one-commonwealth-law-could-get-in-the-way-161982">Voluntary assisted dying will begin in WA this week. But one Commonwealth law could get in the way</a>
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<p>In November, the court <a href="https://search2.fedcourt.gov.au/s/search.html?collection=judgments&sort=date&meta_v_phrase_orsand=judgments%2FJudgments%2F&meta_2=carr+&meta_A=&meta_z=&meta_3=&meta_n_phrase_orsand=&query_sand=&query_or=&query_not=&query_phrase=&query_prox=&meta_d=23+november+2023&meta_d1=&meta_d2=&meta_7=&meta_4=&meta_B=">declared</a> voluntary assisted dying <em>was</em> considered suicide for the purpose of the Criminal Code. This meant doctors across Australia were prohibited from using telehealth services for voluntary assisted dying consultations. </p>
<p>Last week, independent federal MP Kate Chaney <a href="https://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22legislation%2Fbillhome%2Fr7146%22;querytype=;rec=0">introduced a private members bill</a> to create an exemption for voluntary assisted dying by excluding it as suicide for the purpose of the Criminal Code. Here’s why it’s needed. </p>
<h2>Not all patients can physically see a doctor</h2>
<p>Defining voluntary assisted dying as suicide in the Criminal Code disproportionately impacts people living in regional and remote areas. People in the country <a href="https://www.ama.com.au/ama-rounds/8-december-2023/articles/ama-urges-attorney-general-amend-laws-relevant-vad-and">rely on</a> the use of “carriage services”, such as phone and video consultations, to avoid travelling long distances to consult their doctor. </p>
<p>Other people with terminal illnesses, whether in regional or urban areas, may be suffering intolerably and unable to physically attend appointments with doctors. </p>
<p>The prohibition against telehealth goes against the <a href="https://www.legislation.vic.gov.au/as-made/acts/voluntary-assisted-dying-act-2017">principles</a> of voluntary assisted dying, which are to minimise suffering, maximise quality of life and promote autonomy.</p>
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<img alt="Old hands hold young hands" src="https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Some people aren’t able to attend doctors’ appointments in person.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hands-that-care-nursing-home-2094784921">Jeffrey M Levine/Shutterstock</a></span>
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<h2>Doctors don’t want to be involved in ‘suicide’</h2>
<p>Equating voluntary assisted dying with suicide has a direct impact on doctors, who <a href="https://eprints.qut.edu.au/213858/1/99568951.pdf">fear</a> criminal prosecution due to the prohibition against using telehealth.</p>
<p>Some doctors may decide not to help patients who choose voluntary assisted dying, leaving patients in a state of limbo. </p>
<p>The number of doctors actively participating in voluntary assisted dying is already <a href="https://www.safercare.vic.gov.au/sites/default/files/2023-08/VADRB%20Annual%20Report%202022-23.pdf">low</a>. The majority of doctors are located in metropolitan areas or major regional centres, leaving some locations with very few doctors participating in voluntary assisted dying. </p>
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Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-is-legal-in-victoria-but-you-may-not-be-able-to-access-it-208282">Voluntary assisted dying is legal in Victoria, but you may not be able to access it</a>
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<h2>It misclassifies deaths</h2>
<p>In state law, people dying under voluntary assisted dying have the cause of their death registered as “the disease, illness or medical condition that was the grounds for a person to access voluntary assisted dying”, while the <a>manner of dying</a> is recorded as voluntary assisted dying. </p>
<p>In contrast, only coroners in each state and territory can make a finding of suicide as a cause of death. </p>
<p>In 2017, voluntary assisted dying was defined in the <a href="http://www8.austlii.edu.au/cgi-bin/viewdoc/au/legis/vic/consol_act/ca2008120/s4.html">Coroners Act 2008 (Vic)</a> as not a reportable death, and thus not suicide. </p>
<p>The language of suicide is inappropriate for explaining how people make a decision to die with dignity under the lawful practice of voluntary assisted dying. </p>
<p>There is ongoing taboo and stigma attached to suicide. People who opt for and are lawfully eligible to access voluntary assisted dying should not be tainted with the taboo that currently surrounds suicide.</p>
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<h2>So what is the solution?</h2>
<p>The only way to remedy this problem is for the federal government to create an exemption in the Criminal Code to allow telehealth appointments to discuss voluntary assisted dying. </p>
<p>Chaney’s private member’s bill is yet to be debated in federal parliament. </p>
<p>If it’s unsuccessful, the Commonwealth attorney-general should pass regulations to exempt voluntary assisted dying as suicide. </p>
<p>A cooperative approach to resolve this conflict of laws is necessary to ensure doctors don’t risk prosecution for assisting eligible people to access voluntary assisted dying, regional and remote patients have access to voluntary assisted dying, families don’t suffer consequences for the erroneous classification of voluntary assisted dying as suicide, and people accessing voluntary assisted dying are not shrouded with the taboo of suicide when accessing a lawful practice to die with dignity.</p>
<p>Failure to change this will cause unnecessary suffering for patients and doctors alike.</p><img src="https://counter.theconversation.com/content/223863/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michaela Estelle Okninski is affiliated with Australasian Association of Bioethics and Health Law.</span></em></p><p class="fine-print"><em><span>Marc Trabsky's research for this article received funding from an Australian Research Council Discovery Early Career Researcher Award (DE220100064).</span></em></p><p class="fine-print"><em><span>Neera Bhatia receives funding from UKRI Arts and Humanities Research Council for an unrelated project. </span></em></p>It’s illegal to discuss voluntary assisted dying via telehealth, which means people who live in rural areas and those who can’t physically go to see a doctor may not be able to access the scheme.Michaela Estelle Okninski, Lecturer of Law, University of AdelaideMarc Trabsky, Associate professor, La Trobe UniversityNeera Bhatia, Associate Professor in Law, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2172612023-11-27T19:17:49Z2023-11-27T19:17:49ZVoluntary assisted dying is now available in all Australian states. How do the NSW laws compare?<p>From <a href="https://www.health.nsw.gov.au/voluntary-assisted-dying/Pages/default.aspx">today</a>, eligible people in New South Wales can ask for voluntary assisted dying. </p>
<p>NSW is the last Australian state to have its voluntary assisted dying laws begin. These laws come into effect following an 18-month implementation period.</p>
<p>Here is who’s eligible to request voluntary assisted dying in NSW and how its laws compare with those in other Australian jurisdictions.</p>
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Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-be-available-to-more-australians-this-year-heres-what-to-expect-in-2023-196209">Voluntary assisted dying will be available to more Australians this year. Here's what to expect in 2023</a>
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<h2>Who’s eligible in NSW?</h2>
<p>To be eligible for voluntary assisted dying in NSW, a person <a href="https://www.health.nsw.gov.au/voluntary-assisted-dying/Pages/eligibility.aspx">must</a>:</p>
<ul>
<li><p>be an adult with decision-making capacity</p></li>
<li><p>be an Australian citizen, permanent resident or a resident of Australia for at least three continuous years</p></li>
<li><p>have lived in NSW for at least 12 months (unless granted an exemption)</p></li>
<li><p>be experiencing suffering that cannot be relieved in a way the person considers tolerable</p></li>
<li><p>have a condition that is advanced, progressive and will cause death within six months (or 12 months for neurodegenerative diseases)</p></li>
<li><p>be acting voluntarily without pressure or duress.</p></li>
</ul>
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Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-all-states-heres-whats-just-happened-in-nsw-and-what-it-means-for-you-183355">Voluntary assisted dying will soon be legal in all states. Here's what's just happened in NSW and what it means for you</a>
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<h2>How do these new laws differ from other states?</h2>
<p>Australian voluntary assisted dying laws are lengthy and tightly regulate the request and assessment process. </p>
<p>A person must make at least three separate requests for voluntary assisted dying, and their eligibility must be assessed by at least two specially trained doctors. The process is overseen by a voluntary assisted dying board (or commission).</p>
<p>The new laws largely follow <a href="https://eprints.qut.edu.au/238547/">the Australian model</a> of voluntary assisted dying, but key differences exist. In NSW:</p>
<ul>
<li><p>people can choose between taking the medication themselves or having the medication administered by a qualified health professional. In other states, administration by health professionals is more limited</p></li>
<li><p>all health-care workers (not just for example, doctors and/or nurse practitioners depending on the state) can raise the option of voluntary assisted dying with the person, provided they also inform the person about palliative care and other treatment options</p></li>
<li><p>nurse practitioners can administer the medication (they cannot in Victoria and South Australia). However, nurses cannot administer it (they can in Tasmania and Queensland) </p></li>
<li><p>non-participating facilities have obligations to facilitate access, including allowing health professionals to enter the facility to provide information. Residential facilities must also allow health professionals to attend to assess for eligibility or administer the medication. In other cases, facilities may be required to transfer the person elsewhere for this to occur. (These obligations do not exist in Victoria, Tasmania and Western Australia)</p></li>
<li><p>the usual waiting period between first and final requests for voluntary assisted dying is five days (compared with nine days in most other states).</p></li>
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Read more:
<a href="https://theconversation.com/what-happens-if-you-want-access-to-voluntary-assisted-dying-but-your-nursing-home-wont-let-you-183364">What happens if you want access to voluntary assisted dying but your nursing home won't let you?</a>
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<h2>What’s happening elsewhere?</h2>
<p>Since 2019, all Australian states have progressively introduced voluntary assisted dying. Each state must review their laws after a fixed period, and some states have already started doing so. </p>
<p><strong>Victoria and Western Australia</strong></p>
<p>Victoria was the first state to introduce voluntary assisted dying laws, which became operational in June 2019. In the first four years, <a href="https://www.safercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-review-board-annual-report-july-2022-to-june-2023#:%7E:text=The%20report%20shows%20that%20since,from%20taking%20the%20prescribed%20substance">912 people died</a> through voluntary assisted dying. </p>
<p>Western Australian laws have been in effect since July 2021. In its first two years of operation, <a href="https://www.health.wa.gov.au/%7E/media/Corp/Documents/Health-for/Voluntary-assisted-dying/VAD-Board-Annual-Report-2022-23.pdf">446 people died</a> through voluntary assisted dying. </p>
<p>Both states have started to review their laws.</p>
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Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-begin-in-wa-this-week-but-one-commonwealth-law-could-get-in-the-way-161982">Voluntary assisted dying will begin in WA this week. But one Commonwealth law could get in the way</a>
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<p><strong>Tasmania, Queensland and South Australia</strong></p>
<p>Tasmanian laws have been operational since October 2022, with <a href="https://www.health.tas.gov.au/publications/release-voluntary-assisted-dying-six-month-report-operations">16 people</a> dying through voluntary assisted dying in the first six months. These laws are scheduled to be reviewed after <a href="https://eprints.qut.edu.au/238547/8/VAD_in_Australia_Comparison_Paper.pdf">October 2025</a>. </p>
<p>Queensland and South Australian laws commenced in January 2023. In Queensland, <a href="https://www.health.qld.gov.au/research-reports/reports/departmental/voluntary-assisted-dying-review-board-annual-report">245 people died</a> in the first six months through voluntary assisted dying. In South Australia, <a href="https://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/services/primary+and+specialised+services/voluntary+assisted+dying/reporting/voluntary+assisted+dying+reporting">70 people died</a> in the first eight months.</p>
<p>Queensland laws will be reviewed in 2026 and South Australia’s will be reviewed in 2027.</p>
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Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-could-soon-be-legal-in-queensland-heres-how-its-bill-differs-from-other-states-161092">Voluntary assisted dying could soon be legal in Queensland. Here's how its bill differs from other states</a>
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<p><strong>Australian Capital Territory and Northern Territory</strong></p>
<p>The territories were previously prevented from passing voluntary assisted dying laws by a federal law, which has now <a href="https://theconversation.com/territories-free-to-make-their-own-voluntary-assisted-dying-laws-in-landmark-decision-heres-what-happens-next-195291">been repealed</a>.</p>
<p>In 2023, the Australian Capital Territory introduced a <a href="https://theconversation.com/voluntary-assisted-dying-is-finally-being-considered-in-the-act-how-would-it-differ-from-state-laws-216733">voluntary assisted dying bill</a> into parliament. The Northern Territory has <a href="https://cmc.nt.gov.au/project-management-office/voluntary-assisted-dying#:%7E:text=It%20is%20led%20by%20co,the%20views%20of%20the%20community">established a panel</a> to make recommendations, and community consultation has begun. </p>
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Read more:
<a href="https://theconversation.com/territories-free-to-make-their-own-voluntary-assisted-dying-laws-in-landmark-decision-heres-what-happens-next-195291">Territories free to make their own voluntary assisted dying laws, in landmark decision. Here's what happens next</a>
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<h2>Passing laws does not guarantee access</h2>
<p>Early research and reports from oversight bodies suggest voluntary assisted dying laws are safe, but have reported a range of barriers to access.</p>
<p>Some of the barriers are specific to a specific state’s law. Other barriers have been reported across states. Barriers include: </p>
<ul>
<li><p>Commonwealth restrictions on discussing voluntary assisted dying via <a href="https://research.qut.edu.au/voluntary-assisted-dying-regulation/wp-content/uploads/sites/292/2023/11/Commonwealth-telehealth-ban-is-unfair-barrier-to-VAD-Research-briefing.pdf">telehealth and email</a></p></li>
<li><p>a lack of <a href="https://www.mja.com.au/journal/2023/219/5/access-voluntary-assisted-dying-victoria-qualitative-study-family-caregivers">doctors</a> willing to provide voluntary assisted dying</p></li>
<li><p><a href="https://onlinelibrary.wiley.com/doi/10.5694/mja2.51787">inadequate remuneration</a> for doctors</p></li>
<li><p>a lengthy and complicated <a href="https://www.mja.com.au/journal/2021/215/3/participating-doctors-perspectives-regulation-voluntary-assisted-dying-victoria">administrative process</a>.</p></li>
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<p>While some barriers may be addressed at the state level, others will require reform at the federal level (for example, telehealth restrictions and inadequate remuneration).</p>
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<p><em>Correction: this article has been updated to reflect the correct waiting periods for voluntary assisted dying in most states other than NSW.</em></p><img src="https://counter.theconversation.com/content/217261/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Casey is a research fellow at the Australian Centre for Health Law Research. She has been employed on multiple projects as a research fellow, including the Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government and the Western Australian Government's Review of the Voluntary Assisted Dying Act 2019. She was also previously engaged as a legal writer for the Voluntary Assisted Dying Training in Queensland.</span></em></p><p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and state governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian, Western Australian and Queensland governments to design and provide the legislatively mandated training for health practitioners involved in voluntary assisted dying in those states. He (with Lindy Willmott) has also developed a model bill for voluntary assisted dying for parliaments to consider. He is a sessional member of the Queensland Civil and Administrative Tribunal, which has jurisdiction for some aspects of this state's voluntary assisted dying legislation. Ben is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian government.</span></em></p><p class="fine-print"><em><span>Katrine was a member of the QUT team which delivered the mandatory training for health professionals participating in voluntary assisted dying in Western Australia and Queensland. </span></em></p><p class="fine-print"><em><span>Lindy Willmott receives or has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and state governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian, Western Australian and Queensland governments to design and provide the legislatively mandated training for health practitioners involved in voluntary assisted dying in those states. She (with Ben White) has also developed a model bill for voluntary assisted dying for parliaments to consider. Lindy Willmott is also a member of the Queensland Voluntary Assisted Dying Review Board, but writes this piece in her capacity as an academic researcher. She is a former board member of Palliative Care Australia.</span></em></p>Here’s who is eligible to request voluntary assisted dying in NSW and how its laws compare with those in other Australian jurisdictions.Casey Haining, Research Fellow, Australian Centre for Health Law Research, Queensland University of TechnologyBen White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of TechnologyKatrine Del Villar, Lecturer, Queensland University of TechnologyLindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2175592023-11-23T02:14:41Z2023-11-23T02:14:41ZIs assisted dying available equally to all in NZ? Questions next year’s review of the law must answer<p>Just over two years ago, terminally ill New Zealanders were given the right to request a medically assisted death with the <a href="https://www.health.govt.nz/our-work/regulation-health-and-disability-system/assisted-dying-service/about-assisted-dying-service/end-life-choice-act-2019">End of Life Choice Act</a>. But having assisted dying legally available doesn’t mean everyone has the access. </p>
<p>While the law provides the option for people with a terminal illness, it also creates challenges for patients, family, whānau, health practitioners and the health system.</p>
<p>Our <a href="https://www.wgtn.ac.nz/assisted-dying/current-projects/exploring-the-early-experiences-of-the-assisted-dying-service-in-aotearoa">ongoing research</a> is looking at how the law has been used since it was enacted in 2021. We have also been looking into <a href="https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-023-01222-4">access issues</a>, <a href="https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-023-01159-8">low levels of knowledge in the health sector</a> around assisted dying, and poor public awareness.</p>
<p>The Ministry of Health is <a href="https://www.tewhatuora.govt.nz/for-the-health-sector/assisted-dying-service/">required to review the law</a> next year, examining how it is operating and reporting on whether any changes are necessary or desirable. </p>
<p>The review is crucial given the evidence of conscious and unconscious bias <a href="https://journal.nzma.org.nz/journal-articles/racism-and-health-in-aotearoa-new-zealand-a-systematic-review-of-quantitative-studies">within the healthcare system</a> and its impact on disadvantaged groups. </p>
<p>Regardless of how individuals voted in the <a href="https://www.parliament.nz/en/get-involved/features/what-is-the-end-of-life-choice-act-referendum-about/">2020 referendum on the End of Life Act</a>, everyone wants to die as well as possible. So the review is important for evaluating how the assisted dying service is influencing the end of life. </p>
<h2>Understanding the End of Life Choice Act</h2>
<p>The act legalises assisted dying for people assessed by at least two doctors as meeting all of the <a href="https://www.tewhatuora.govt.nz/for-the-health-sector/assisted-dying-service/assisted-dying-information-for-the-public/assisted-dying-eligibility-and-access/">eligibility criteria</a>. To be eligible, a person needs to be:</p>
<ul>
<li><p>18 years or older</p></li>
<li><p>a citizen or permanent resident of NZ</p></li>
<li><p>suffering from a terminal illness that is likely to end the person’s life within six months</p></li>
<li><p>in an advanced state of irreversible decline in physical capability</p></li>
<li><p>experiencing unbearable suffering that cannot be relieved in a manner that the person considers tolerable and</p></li>
<li><p>competent to make an informed decision about assisted dying. </p></li>
</ul>
<p>In the two years since the act came into force, <a href="https://www.thepost.co.nz/politics/350107377/act-wants-expand-assisted-dying-laws-forecasting-political-battle">1,441 people applied for assisted dying</a>, of which just 565 people had an assisted death. As many as 374 people died while applying, 89 people changed their minds and 118 applications are still underway. Another 295 people did not meet the eligibility criteria. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/assisted-dying-will-become-legal-in-new-zealand-in-a-year-what-has-to-happen-now-149138">Assisted dying will become legal in New Zealand in a year — what has to happen now?</a>
</strong>
</em>
</p>
<hr>
<h2>Is the law working?</h2>
<p>The Act has some distinctive safeguards to prevent potential coercion. It <a href="https://www.tewhatuora.govt.nz/for-the-health-sector/assisted-dying-service/assisted-dying-information-for-the-public/assisted-dying-eligibility-and-access/">bans health professionals</a> from discussing assisted dying unless a person raises it first. </p>
<p>If a person is found eligible, but then loses competency to give their final consent, they cannot have an assisted death. People are ineligible if they apply <em>only</em> because they have a mental illness or disorder, a disability of any kind, or are of advanced age. </p>
<p>In practice, the prohibition on health professionals raising the topic means people might not know the option is available to them, or that they may be eligible. The person may not have the words or the ability to raise it with a health practitioner. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-have-a-right-to-die-with-dignity-the-medical-profession-has-a-duty-to-assist-67574">We have a right to die with dignity. The medical profession has a duty to assist</a>
</strong>
</em>
</p>
<hr>
<p>It also means those who have higher literacy and access to resources are more likely to access assisted dying. This raises the question of whether access to information and assisted dying is equally available for all individuals. </p>
<p>During this first stage of research, we spoke with 22 family members and health professionals who have cared for someone undergoing assisted dying. </p>
<p>During our interviews, one family member of someone who lost competency during the process described the need for final consent as “ridiculous”. </p>
<blockquote>
<p>When she is unable to respond to be affirmative, if she’s already given the consent to the process, why can’t the process just proceed? Otherwise, you have to say I want to die earlier than I want to die just to meet your ridiculous regulation. </p>
</blockquote>
<p>Others we spoke to expressed similar frustrations and concerns.</p>
<p>Currently, we do not have data about how these safeguards are operating, or data about why people choose assisted dying. Te Whatu Ora <a href="https://www.tewhatuora.govt.nz/for-the-health-sector/assisted-dying-service/assisted-dying-service-data-and-reporting/">reports the demographics</a> of those who applied for assisted dying, but not who completed it. </p>
<p>Between November 2021 and November 2022, 80.8% of people who applied for assisted dying were European/Pākehā and 5.5% were Māori. Just over 55% were female, 75.8% were 65 years or older, and 77% were receiving palliative care at the time of the application. The majority – 67.9% – were diagnosed with cancer. </p>
<p>Te Whatu Ora also doesn’t report about people’s experiences of using the service or being declined. </p>
<p>Their views, and the views of their whānau, families and health care professionals, would greatly inform the future of the service. Likewise, <a href="https://www.tearairesearchgroup.net/news-1/5qo5gn429uj0jcatkybyh4l2qlandc">research with Māori</a> and people living with disability or impairment would also greatly benefit the review.</p>
<p>That’s why <a href="https://www.wgtn.ac.nz/assisted-dying/current-projects/exploring-the-early-experiences-of-the-assisted-dying-service-in-aotearoa">our team is researching the experiences of people</a> across the assisted dying pathway. </p>
<h2>Understanding the experience</h2>
<p>The next step in our research is to speak to assisted dying service users (both eligible and ineligible), including those living with an impairment, disability, or are Deaf. </p>
<p>We will also be speaking with assisted dying providers, and healthcare organisation leaders and policymakers who are responsible for deciding how assisted dying is practised at their organisation. </p>
<p>The purpose of this research is to gather evidence to inform the first review of the End of Life Choice Act in November 2024. It is important to understand, from a variety of perspectives, if the Act’s safeguards are safe and equitable. </p>
<p>Our findings will help to advance the aim of enhancing the service to be safe, accessible, and equitably available to all eligible New Zealanders. </p>
<hr>
<p><em>Co-authors include Professor Kate Diesfeld, Associate Professor Richard Egan and Dr Te Hurinui Karaka-Clarke.</em></p>
<hr><img src="https://counter.theconversation.com/content/217559/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jessica Young receives funding from the Health Research Council and the Cancer Society New Zealand. She previously served as an appointed member of the Support and Consultation for End of Life NZ (SCENZ) Group and was a member of the now concluded End of Life Choice Act Referendum Society.</span></em></p><p class="fine-print"><em><span>Aida Dehkhoda receives funding from the Health Research Council and the Auckland Medical Research Foundation to research assisted dying.</span></em></p><p class="fine-print"><em><span>Jeanne Snelling receives funding from the Health Research Council of New Zealand to research assisted dying. </span></em></p>Two years after the law came into force, just 40% of the 1,441 New Zealanders who applied for an assisted death were able to have one. Next year’s review has important questions to answer.Jessica Young, Senior Research Fellow, Te Herenga Waka — Victoria University of WellingtonAida Dehkhoda, Postdoctoral Research Fellow, Te Herenga Waka — Victoria University of WellingtonJeanne Snelling, Lecturer, University of OtagoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2167332023-11-01T02:02:04Z2023-11-01T02:02:04ZVoluntary assisted dying is finally being considered in the ACT. How would it differ from state laws?<figure><img src="https://images.theconversation.com/files/556975/original/file-20231031-19-anshst.jpg?ixlib=rb-1.1.0&rect=43%2C612%2C4759%2C2585&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/woman-standing-on-glass-window-fTF-oB9BZSg">Rich Brown/Unsplash</a></span></figcaption></figure><p>The first Australian Capital Territory voluntary assisted dying bill in more than 25 years was tabled in parliament yesterday. </p>
<p>This was possible after the Commonwealth <a href="https://theconversation.com/territories-free-to-make-their-own-voluntary-assisted-dying-laws-in-landmark-decision-heres-what-happens-next-195291">lifted the ban</a> on territories making laws about assisted dying in December last year. This meant the ACT and Northern Territory could join the six Australian states which have now passed voluntary assisted dying laws.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1719142405969260844"}"></div></p>
<p>As with all parliamentary debates about voluntary assisted dying in Australia, this will be a conscience vote. But what will ACT parliamentarians be voting on?</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-be-available-to-more-australians-this-year-heres-what-to-expect-in-2023-196209">Voluntary assisted dying will be available to more Australians this year. Here's what to expect in 2023</a>
</strong>
</em>
</p>
<hr>
<p>In some ways, the ACT bill reflects the <a href="https://eprints.qut.edu.au/238547/8/VAD_in_Australia_Comparison_Paper.pdf">Australian model</a>:</p>
<ul>
<li>detailed eligibility criteria are reviewed by two independent and trained health practitioners </li>
<li>patients need to make three requests at various points</li>
<li>there is an oversight board scrutinising cases, along with offences, to protect patients</li>
<li>health practitioners’ conscientious objection is protected.</li>
</ul>
<p>But ACT bill has three new features: </p>
<ul>
<li>no specific timeframe until death</li>
<li>nurse practitioners can be involved in assessing eligibility </li>
<li>protections for patients in institutions that object to voluntary assisted dying.</li>
</ul>
<h2>No specific timeframe until death</h2>
<p>Reflecting the <a href="https://eprints.qut.edu.au/238547/8/VAD_in_Australia_Comparison_Paper.pdf">national approach</a>, voluntary assisted would be available for adults living in the ACT with decision-making capacity who seek this choice voluntarily and without coercion. They must also be suffering intolerably.</p>
<p>But discussion will no doubt focus on the fact that the ACT bill does not contain an expected timeframe until death. </p>
<p>Australian states have normally required an expected death within six months, with an extension to 12 months for neurodegenerative conditions. Queensland has 12 months for all conditions. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-could-soon-be-legal-in-queensland-heres-how-its-bill-differs-from-other-states-161092">Voluntary assisted dying could soon be legal in Queensland. Here's how its bill differs from other states</a>
</strong>
</em>
</p>
<hr>
<p>But in the ACT, the relevant criteria is silent on time to death and requires only that the condition is “advanced, progressive and expected to cause death”.</p>
<p>Reasons for this policy choice include that a timeframe is arbitrary, it exacerbates suffering for terminally ill patients and was not supported in public consultation. </p>
<p>This new feature must be seen in context. Voluntary assisted dying <a href="https://www.unswlawjournal.unsw.edu.au/wp-content/uploads/2022/04/Issue-451-White-et-al.pdf">eligibility criteria work together</a> so all of them must be satisfied before a person can access voluntary assisted dying. </p>
<p>The ACT bill requires the person’s condition be “advanced” and this is defined to include requiring that the person is in the “last stages of life”. Because this criterion must be satisfied too, just having an illness that will cause death is not enough to access the service.</p>
<p>Our <a href="https://www.unswlawjournal.unsw.edu.au/wp-content/uploads/2022/04/Issue-451-White-et-al.pdf">research has shown</a> that because eligibility criteria work together, removing the timeframe to death is unlikely to affect which conditions will allow people to access voluntary assisted dying. </p>
<figure class="align-center ">
<img alt="Man reaches for glasses next to his bed" src="https://images.theconversation.com/files/556977/original/file-20231031-21-mmrb9g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/556977/original/file-20231031-21-mmrb9g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/556977/original/file-20231031-21-mmrb9g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/556977/original/file-20231031-21-mmrb9g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/556977/original/file-20231031-21-mmrb9g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/556977/original/file-20231031-21-mmrb9g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/556977/original/file-20231031-21-mmrb9g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The ACT change is unlikely to affect which conditions will be eligible for assisted dying.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/person-in-green-shirt-holding-eyeglasses-8899485/">Shvets Production/Pexels</a></span>
</figcaption>
</figure>
<h2>Nurse practitioners can be involved in assessing eligibility</h2>
<p>Australian voluntary assisted dying laws have to date required that both health practitioners assessing eligibility be doctors. </p>
<p>The ACT bill contemplates that one practitioner could be a nurse practitioner. When introducing the bill, Minister for Human Rights Tara Cheyne said nurse practitioners must have relevant experience and at least one year’s endorsement after qualifying before they can undertake that role. </p>
<p>Cheyne <a href="https://www.canberratimes.com.au/story/8406420/voluntary-assisted-dying-laws-introduced-in-act/">pointed to the ACT’s small health workforce</a>; and <a href="https://onlinelibrary.wiley.com/doi/10.5694/mja2.52004">a key challenge</a> of existing state voluntary assisted dying systems has been finding sufficient numbers of practitioners to assist patients. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-is-legal-in-victoria-but-you-may-not-be-able-to-access-it-208282">Voluntary assisted dying is legal in Victoria, but you may not be able to access it</a>
</strong>
</em>
</p>
<hr>
<h2>Protecting patient access in objecting institutions</h2>
<p>A third key difference is how the ACT bill deals with institutions which may object to voluntary assisted dying, such as faith-based hospitals. </p>
<p>There is <a href="https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-023-00902-3">growing evidence</a> this is a problem in the first states to pass voluntary assisted dying laws like Victoria. Later states – South Australia, Queensland and New South Wales – have dealt with this issue specifically in their law.</p>
<p>Those states generally protect access for permanent residents in facilities, such as aged care residents, but offer less protection for non-permanent residents, such as a patient in a hospital.</p>
<p>The ACT has opted for a simpler approach that does not distinguish between permanent and non-permanent residents, giving stronger protection for the latter.</p>
<p>The default is that voluntary assisted dying can be accessed in facilities unless that is not reasonably practicable. </p>
<p>The ACT bill also regulates this more robustly by requiring institutions to develop minimum standards for how they will comply with these laws and creating offences for non-compliance.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-happens-if-you-want-access-to-voluntary-assisted-dying-but-your-nursing-home-wont-let-you-183364">What happens if you want access to voluntary assisted dying but your nursing home won't let you?</a>
</strong>
</em>
</p>
<hr>
<h2>What happens next?</h2>
<p>The bill was referred to a parliamentary committee for further consideration. This happened for Australian state voluntary assisted dying laws and provides opportunity for reflection on the bill. </p>
<p>Some will object to these features in the ACT bill because they are different from the Australian model. Such objections also arose when states after Victoria made decisions that their law would be different. </p>
<p>But it is difficult to argue the ACT should blindly follow what other states have done. There is evidence that <a href="https://theconversation.com/voluntary-assisted-dying-is-legal-in-victoria-but-you-may-not-be-able-to-access-it-208282">access to voluntary assisted dying under those laws is challenging</a> and local considerations may also mean different approaches are needed.</p>
<p>We anticipate robust consideration of the bill by the committee and then parliament. If passed, the usual 18-month implementation period is proposed which means ACT residents could have access by 2025.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/territories-free-to-make-their-own-voluntary-assisted-dying-laws-in-landmark-decision-heres-what-happens-next-195291">Territories free to make their own voluntary assisted dying laws, in landmark decision. Here's what happens next</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/216733/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and state governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian, Western Australian and Queensland governments to design and provide the legislatively mandated training for health practitioners involved in voluntary assisted dying in those states. He (with Lindy Willmott) has also developed a model bill for voluntary assisted dying for parliaments to consider. He is a sessional member of the Queensland Civil and Administrative Tribunal, which has jurisdiction for some aspects of this state's voluntary assisted dying legislation. Ben is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian government.</span></em></p><p class="fine-print"><em><span>Lindy Willmott receives or has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and state governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian, Western Australian and Queensland governments to design and provide the legislatively mandated training for health practitioners involved in voluntary assisted dying in those states. She (with Ben White) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Lindy Willmott is also a member of the Queensland Voluntary Assisted Dying Review Board, but writes this piece in her capacity as an academic researcher. She is a former board member of Palliative Care Australia.</span></em></p>The first Australian Capital Territory voluntary assisted dying bill in more than 25 years was tabled in parliament yesterday. So what will MPs vote on? And how is it different to state legislation?Ben White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of TechnologyLindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2088372023-07-04T02:16:52Z2023-07-04T02:16:52ZShould terminally ill young people be able to choose voluntary assisted dying? The ACT is considering it<figure><img src="https://images.theconversation.com/files/535235/original/file-20230703-246284-7e1hli.jpg?ixlib=rb-1.1.0&rect=17%2C4%2C2977%2C1985&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/little-girl-sick-her-hand-hold-771736510">Shutterstock</a></span></figcaption></figure><p>The ACT Labor-Greens government is currently considering legalising voluntary assisted dying, as has recently occurred in all six Australian states. But the results of community consultation on the <a href="https://hdp-au-prod-app-act-yoursay-files.s3.ap-southeast-2.amazonaws.com/5016/8791/2515/FINAL_Listening_Report_VAD_for_publication_on_YourSay_-_27.06.23.pdf">topic</a> suggest the ACT’s proposed legislation may differ in significant respects from the <a href="https://eprints.qut.edu.au/238547/">model</a> adopted by other Australian states and territories. </p>
<p>One controversial difference is the <a href="https://www.theaustralian.com.au/nation/politics/teens-as-young-as-14-could-access-voluntary-assisted-dying-in-the-act/news-story/44dfd2f135c71e2f88d4603275ed794b">proposal</a> to allow people under 18 to access voluntary assisted dying if they have a terminal illness. </p>
<p>The ACT proposes not setting a minimum age requirement for access to voluntary assisted dying. Instead, as is the case with other areas of medical treatment, the decision-making capacity of people under the age of 18 would be assessed on a case-by-case basis by medical practitioners. </p>
<p>If they are assessed as having the maturity to understand the nature of their medical condition, and the nature of a decision to seek assistance to end their life, they would be able to be considered for voluntary assisted dying.</p>
<h2>ACT could be the first</h2>
<p>There appears to be some support within the ACT for this proposal. In a <a href="https://yoursayconversations.act.gov.au/voluntary-assisted-dying-in-ACT">survey</a> of almost 3,000 ACT residents conducted in February this year, some 32% of respondents supported a minimum age of 18 for people to be able to access voluntary assisted dying – suggesting the majority don’t see it as required. </p>
<p>However, it has already elicited <a href="https://www.heraldsun.com.au/news/national/horrified-act-government-may-offer-euthanasia-for-teens/video/d18fc11b451b16a8518e74e83c2f2dff">impassioned commentary</a>, <a href="https://www.skynews.com.au/australia-news/politics/senator-james-paterson-argues-euthanasia-is-never-completely-safe-as-act-considers-access-to-terminally-ill-teens/news-story/2afc4e0cec0d240b069debe7519c3df6">debate</a> and <a href="https://www.theaustralian.com.au/nation/low-barr-archbishops-concerns-vad-will-lead-act-standard-to-the-gutter/news-story/6e460bfb70796cc915501412cdb717d5">expressions of concern</a>.</p>
<p>If passed, the ACT would become the first Australian jurisdiction to allow access to voluntary assisted dying by people under 18. </p>
<p>Internationally, only three countries – the <a href="https://www.cambridge.org/core/books/international-perspectives-on-endoflife-law-reform/extension-of-the-belgian-euthanasia-law-to-minors-in-2014/C32C0050B67BF4EE16020BA320B0B415">Netherlands, Belgium and Colombia</a> – permit minors to access voluntary assisted dying or euthanasia. Canada is currently considering a <a href="https://www.parl.ca/DocumentViewer/en/44-1/AMAD/report-2/page-135#33">proposal</a> to expand its assisted dying law to “mature minors” deemed to have decision-making capacity. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-is-legal-in-victoria-but-you-may-not-be-able-to-access-it-208282">Voluntary assisted dying is legal in Victoria, but you may not be able to access it</a>
</strong>
</em>
</p>
<hr>
<h2>Suffering doesn’t discriminate by age</h2>
<p>During <a href="https://yoursayconversations.act.gov.au/voluntary-assisted-dying-in-ACT/listening-report-now-available">community consultation</a>, many ACT residents felt an age requirement would be arbitrary. </p>
<p>Young people, just like adults, may also be suffering intolerably from an incurable terminal illness. Age limits are only an approximation of a person’s capacity to make one’s own decisions in important matters of life and death. </p>
<p>However, the absence of age limits can also lead to significant variations in access, depending on the views of the medical practitioners involved in making the decision as to a young person’s capacity. </p>
<p>In Belgium, where <a href="https://edition.cnn.com/2016/09/17/health/belgium-minor-euthanasia/index.html">no minimum age</a> is stipulated (provided children understand the decision they are making), children as young as 9 and 11 have been granted access to euthanasia.</p>
<p>In the <a href="https://www.government.nl/topics/euthanasia/euthanasia-assisted-suicide-and-non-resuscitation-on-request">Netherlands</a>, children must be aged 12 or over to request euthanasia. In <a href="https://wfrtds.org/worldmap/colombia/">Colombia</a>, in most cases a child must be aged 12 or over, although in extraordinary cases children aged between 6 and 12 may demonstrate “exceptional neurocognitive and psychological development” and an advanced concept of death appropriate for a 12-year-old child. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&rect=45%2C18%2C5961%2C3989&q=45&auto=format&w=1000&fit=clip"><img alt="child with bald head in blurred in background of medical setting with toys on shelf" src="https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&rect=45%2C18%2C5961%2C3989&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The ACT would be the first Australian place to approve voluntary assisted dying for minors.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/oncological-child-sitting-hospital-chemotherapy-1082978291">Shutterstock</a></span>
</figcaption>
</figure>
<h2>Checks and balances required</h2>
<p>The ACT government noted allowing young people to access voluntary assisted dying requires <a href="https://hdp-au-prod-app-act-yoursay-files.s3.ap-southeast-2.amazonaws.com/5016/8791/2515/FINAL_Listening_Report_VAD_for_publication_on_YourSay_-_27.06.23.pdf">extra safeguards</a> to balance the autonomous rights of young people against their right to special protection and the rights of families. </p>
<p>Parental consent is required in addition to the child’s consent for all children in Belgium (except emancipated minors), and for children aged under 16 in the Netherlands and under 14 in Colombia.</p>
<p>For children aged 16 to 17 in the Netherlands, and 14 to 17 in Colombia, parents are informed and consulted about the young person’s decision. But ultimately the decision is that of the child. </p>
<p>If the ACT proceeds down this path, legislation will need to address difficult questions, including whose wishes prevail if a young person and their parents are in conflict. </p>
<p>Some jurisdictions, including Belgium and Columbia, require extra consultations above those required for adults, to confirm a young person’s capacity to make the decision to end their life. </p>
<p>Other supports may include access to child and family counselling throughout the voluntary assisted dying request and assessment process, or independent review of the child’s eligibility assessment.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-all-states-heres-whats-just-happened-in-nsw-and-what-it-means-for-you-183355">Voluntary assisted dying will soon be legal in all states. Here's what's just happened in NSW and what it means for you</a>
</strong>
</em>
</p>
<hr>
<h2>How many young people could choose voluntary assisted dying?</h2>
<p>There is not likely to be a great need for young people to access voluntary assisted dying in the ACT. </p>
<p>In Belgium, only four children are reported to have accessed euthanasia in <a href="https://www.cambridge.org/core/books/international-perspectives-on-endoflife-law-reform/extension-of-the-belgian-euthanasia-law-to-minors-in-2014/C32C0050B67BF4EE16020BA320B0B415">nine years</a>. In the Netherlands, 17 cases have been reported over a <a href="https://link.springer.com/article/10.1007/s40656-022-00554-3">20-year period</a>. Although cases of terminally ill young people seeking access to VAD are likely to be <a href="https://www.abc.net.au/news/2021-04-29/rhys-habermann-and-voluntary-euthanasia/100062384">exceptional</a>, they will occasionally arise. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/dutch-government-to-expand-euthanasia-law-to-include-children-aged-one-to-12-an-ethicists-view-203961">Dutch government to expand euthanasia law to include children aged one to 12 – an ethicist's view</a>
</strong>
</em>
</p>
<hr>
<h2>How else could ACT laws be different?</h2>
<p>Some other departures from the <a href="https://eprints.qut.edu.au/238547/">Australian model</a> proposed by the ACT government are likely to have a far greater impact than the inclusion of minors. </p>
<p>The proposal not to specify a timeframe to death will open the door for people diagnosed with a terminal illness to seek voluntary assisted death several years before their anticipated passing. In other countries, such as Canada, this has been interpreted to allow people to access voluntary assisted dying in the early stages of dementia, before a person loses capacity. </p>
<p>Another proposal with far-reaching ramifications is whether a request for voluntary assisted dying can be made in an <a href="https://www.theaustralian.com.au/nation/politics/teens-as-young-as-14-could-access-voluntary-assisted-dying-in-the-act/news-story/44dfd2f135c71e2f88d4603275ed794b">advance directive</a>. If enacted, this would allow for the euthanasia of a person with advanced dementia, in compliance with their previous request. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1531387864293982209"}"></div></p>
<h2>Under consideration</h2>
<p>At this stage, these proposals simply summarise the views of the ACT community. The next step is for the ACT government to develop its preferred model law to legalise voluntary assisted dying in the territory. </p>
<p>A bill is likely to be introduced in late 2023. It will then be considered by a parliamentary committee, before being debated in the ACT Legislative Assembly some time next year. That gives the ACT government time to consider what safeguards and supports should be included if children or young people are to be permitted to access voluntary assisted dying there.</p><img src="https://counter.theconversation.com/content/208837/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Katrine Del Villar was a member of the team from the Australian Centre for Health Law Research at QUT which was commissioned by the Queensland and Western Australian governments to prepare mandatory training for medical practitioners on the voluntary assisted dying laws in those states. </span></em></p>The decision-making capacity of people under 18 would be assessed on a case-by-case basis by medical practitioners.Katrine Del Villar, Postdoctoral research fellow, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2062982023-06-04T20:04:32Z2023-06-04T20:04:32ZPeople thinking of voluntary assisted dying may be able to donate their organs. We need to start talking about this<figure><img src="https://images.theconversation.com/files/528191/original/file-20230525-23-9njh7.jpg?ixlib=rb-1.1.0&rect=2%2C0%2C995%2C666&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/multiracial-team-professional-medical-surgeons-performs-2089661560">Shutterstock</a></span></figcaption></figure><p>The number of people needing an organ transplant vastly outweighs the number of organs available. </p>
<p><a href="https://www.donatelife.gov.au/sites/default/files/2023-02/OTA%202022%20Donation%20and%20Transplantation%20Activity%20Report.pdf">In 2022</a> there were about 1,800 Australians waiting for an organ but only about 1,200 people received an organ transplant.</p>
<p>But in <a href="https://onlinelibrary.wiley.com/doi/10.1111/imj.16085">a recent paper</a>, I outline one unexplored option for increasing the number of potential organ donors in Australia – transplanting organs from people undergoing voluntary assisted dying. This would involve transplanting organs only after someone had died.</p>
<p>It’s estimated <a href="https://jamanetwork.com/journals/jama/article-abstract/2616383">about 10%</a> of people eligible for voluntary assisted dying are likely to be medically suitable to donate their organs. Based on <a href="https://www.safercare.vic.gov.au/sites/default/files/2022-09/Voluntary%20Assisted%20Dying%20Review%20Board%20Report%20of%20Operations%20July%202021-June%2022_FINAL.pdf">Victorian figures</a> alone, this could lead to about an extra 40 potential organ donors each year.</p>
<p>This type of organ donation has taken place <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9297969/">for more than 20 years</a> in Europe, and more recently in Canada.</p>
<p>Organs transplanted from donors undergoing voluntary assisted dying <a href="https://jamanetwork.com/journals/jamasurgery/article-abstract/2769118">have</a> <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.16267">similar</a> <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.16971">success rates</a> to more traditional donations.</p>
<p>Yet, this is a discussion we’ve yet to have in Australia. Here are some of the ethical and practical issues we need to start talking about.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-be-available-to-more-australians-this-year-heres-what-to-expect-in-2023-196209">Voluntary assisted dying will be available to more Australians this year. Here's what to expect in 2023</a>
</strong>
</em>
</p>
<hr>
<h2>Is this ethical? It’s tricky</h2>
<p>The main ethical challenge is ensuring a person isn’t motivated to end their life prematurely so they can donate their organs.</p>
<p><a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">Internationally</a>, <a href="https://jme.bmj.com/content/42/8/486.short">this challenge</a> is mainly addressed by having <a href="https://www.sciencedirect.com/science/article/pii/S1600613523000291">independent assessments</a> by multiple doctors. This is to ensure the motivation is genuine and honest, much like assessing someone before voluntary assisted dying.</p>
<p>Similarly, it is important the doctor of someone undergoing voluntary assisted dying isn’t persuading them to donate an organ. This means any doctor overseeing voluntary assisted dying may be limited in how much they can discuss organ donation with their patient. </p>
<p>Again, this <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">has been managed internationally</a> by having separate, independent doctors overseeing organ donation and voluntary assisted dying, <a href="https://www.cmaj.ca/content/190/44/E1305.short">without one influencing</a> the other.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Elderly woman in bed hand on covers" src="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=437&fit=crop&dpr=1 600w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=437&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=437&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=549&fit=crop&dpr=1 754w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=549&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=549&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Is this what people really want, with so little time left?</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-woman-laying-on-bed-hospital-1054837748">Shutterstock</a></span>
</figcaption>
</figure>
<p>Organ donation may also affect the way voluntary assisted dying is conducted, which <a href="https://www.sciencedirect.com/science/article/pii/S1600613523000291">may impact</a> participants’ very limited quality of life. </p>
<p>That’s because determining if someone is eligible to donate an organ involves a number of <a href="https://jme.bmj.com/content/43/9/601.short">investigations</a>. These may include blood tests, radiology (imaging) and numerous clinical encounters to exclude diseases such as cancer, which would prevent someone donating their organs. These investigations may be exhausting but necessary.</p>
<p>This burden must be weighed against the participant’s wishes and motivation to donate their organs. So people must also be informed of the impact organ donation will have on their limited life left. </p>
<p>The choices of people considering this option must be respected and they must be given multiple opportunities to review their decision, without undue influence or bias.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/three-ethical-ways-to-increase-organ-donation-in-australia-42744">Three ethical ways to increase organ donation in Australia</a>
</strong>
</em>
</p>
<hr>
<h2>Practical issues: coordination, location, regulation</h2>
<p>Practically, combining organ donation and voluntary assisted dying is <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">challenging</a>. This includes the difficulty organising and coordinating specialists in organ donation, voluntary assisted dying and transplantation.</p>
<p>This is why, internationally, organ donation of this nature mostly occurs in large hospitals, where it’s easier to coordinate.</p>
<p>So if people want to donate an organ this way, they may spend their last moments in an unfamiliar environment.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Patient being wheeled on stretcher through hospital corridors" src="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">People may have to be moved to a large hospital with the facilities and staff on hand.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/surgeon-assistant-team-transport-move-stretcher-2062330820">Shutterstock</a></span>
</figcaption>
</figure>
<p>Efforts have been made <a href="https://jamanetwork.com/journals/jamasurgery/article-abstract/2776765">internationally</a> to prioritise these valuable last moments by giving people the choice of where voluntary assisted dying occurs (<a href="https://www.cmaj.ca/content/190/44/E1305.short">such as their home</a>). But this currently only occurs in a minority of cases and increases the complexity of organ donation.</p>
<p>Regulating the process is also essential to developing a safe, trustworthy and effective program. Ideally a centralised organisation such as Australia’s national <a href="https://www.donatelife.gov.au">Organ and Tissue Authority</a> would organise, undertake and regulate this.</p>
<p>However, this may be challenging given voluntary assisted dying practices are specific to each state.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/an-opt-out-system-isnt-the-solution-to-australias-low-rate-of-organ-donation-108336">An opt-out system isn't the solution to Australia's low rate of organ donation</a>
</strong>
</em>
</p>
<hr>
<h2>The challenges ahead</h2>
<p>If someone considering voluntary assisted dying wants to donate their organs and is deemed eligible, there is currently <a href="https://onlinelibrary.wiley.com/doi/10.1111/imj.16085">no legal barrier in Australia</a> to stop them.</p>
<p>What might prevent them is how their doctor responds, and whether there are the services and organisations willing to fulfil this request ethically and practically.</p>
<p>The next step in considering this form of organ donation is to discuss the prospect publicly. </p>
<p>Every extra donated organ is potentially lifesaving. So we should make every effort to consider potential safe and ethical ways to increase donation and transplantation rates.</p><img src="https://counter.theconversation.com/content/206298/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dr Robert Ray is also a physician trainee at Barwon Health, Geelong.</span></em></p>Every extra organ available for donation is potentially lifesaving. And it can be done safely and ethically.Robert Ray, Affiliate Associate Lecturer, School of Medicine, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2052782023-05-17T18:04:19Z2023-05-17T18:04:19ZMAID’s evolving ethical tensions: Does it make dying with dignity easier than living with dignity?<figure><img src="https://images.theconversation.com/files/526437/original/file-20230516-17-xndwxx.jpg?ixlib=rb-1.1.0&rect=127%2C82%2C4446%2C3016&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">There is debate about whether a health-care worker can ethically participate in both palliative care and the MAID program. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Medical assistance in dying (MAID) has <a href="https://doi.org/10.1007/s10912-022-09764-z">received lots of media attention over the past few years</a>. This is especially true as the Canadian government considers expanding eligibility for people whose sole underlying condition is a mental illness. This has led to <a href="https://theconversation.com/canada-delays-expanding-medical-assistance-in-dying-to-include-mental-illness-but-its-still-a-policy-built-on-quicksand-196264">increased concerns about the ethics of MAID</a>.</p>
<p>Even in its present form, MAID is fraught with ethical tensions. As scholars <a href="https://doi.org/10.1016/j.jrurstud.2022.09.011">engaged in research on MAID</a>, we have heard about these tensions firsthand through interviews with physicians and nurses who provide MAID-related care, clinical ethicists who perform MAID-related consults, family members of patients who have received MAID and patients who have requested MAID. </p>
<p>From these conversations, we highlight three emerging tensions: </p>
<ol>
<li>Palliative care versus MAID provision; </li>
<li>Transparency versus privacy; and </li>
<li>Providing a dignified death versus a dignified life. </li>
</ol>
<p>These tensions can contribute to unpredictability in health service provision, strained relationships, moral distress, harm for prospective patients and the erosion of public trust.</p>
<h2>Palliative care vs. MAID provision</h2>
<p>There is debate about whether a health-care worker can participate in both palliative care and the MAID program. </p>
<p>Palliative care involves efforts to improve the <a href="https://www.virtualhospice.ca/Assets/MAiD_Report_Final_October_15_2018_20181218165246.pdf">quality of life of patients facing serious or life-threatening illness by preventing or relieving suffering through early identification, assessment and treatment of pain, including physical, psychosocial and spiritual pain</a>. MAID, on the other hand, provides patients experiencing intolerable suffering the option to end their lives with the assistance of a doctor or nurse practitioner.</p>
<p>Some people see the two services as <a href="https://healthydebate.ca/2020/06/topic/palliative-care-and-maid/">co-existing within end-of-life care</a>. Others view them as having <a href="https://www.chpca.ca/news/chpca-and-cspcp-joint-call-to-action/">incompatible intentions and goals</a>, and may see the two services as being in conflict. </p>
<figure class="align-center ">
<img alt="A man in a white coat, stethoscope and face mask sitting in a chair and looking upset" src="https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Ethical conflicts can potentially place strain on professional relationships between MAID providers and palliative care teams or cause moral distress for palliative care providers.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>For instance, as one medical professional informed us, pharmaceuticals that might be provided to relieve pain during palliative care could undermine cognitive capacity and limit a patient’s ability to provide consent to MAID:</p>
<blockquote>
<p>“It was brutal. I knew at that time we wouldn’t be able to do the provision because we would have to medicate her so much… then we’d have to reverse it to get consent, and that was really hard.”</p>
</blockquote>
<p>Examples like this reveal the tensions that medical professionals might face if they seek to provide both palliative care and MAID. We also heard that some palliative care professionals perceive MAID requests as a failure of their efforts to provide quality palliative care. </p>
<p>This can potentially place strain on professional relationships between MAID providers and palliative care teams, or cause moral distress for palliative care providers.</p>
<h2>Transparency vs. privacy</h2>
<p>The federal government notes the importance of <a href="https://www.justice.gc.ca/eng/cj-jp/ad-am/bk-di.html">transparency for the improvement of MAID and maintenance of public trust</a>. However, patients and care providers sometimes have strict privacy concerns, wanting their participation in MAID kept confidential because of disapproving family, colleagues or community members. </p>
<figure class="align-center ">
<img alt="A man in a hospital bed and a woman with her arm around him, both looking at a man in a white coat seen from behind" src="https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Patients and care providers sometimes have strict privacy concerns, wanting their participation in MAID kept confidential because of disapproving family, colleagues or community members.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>This is particularly true in smaller communities where privacy may be more limited, health-care professionals are <a href="https://doi.org/10.1111/nin.12308">highly visible</a> and people may be concerned about <a href="https://edmontonjournal.com/news/local-news/rural-alberta-faces-more-end-of-life-care-challenges-conference">MAID-related stigma</a>.</p>
<p>One patient in our study had family members insist on keeping their cause of death a secret. Another participant spoke about a patient’s request for the MAID team to do the provision at a long-term care home without letting the staff, family or other residents know. </p>
<p>When medical providers are asked to assist patients in such secrecy, transparency may become compromised.</p>
<blockquote>
<p>“Staff had to really balance transparency with confidentiality… One of those transparency pieces, very clearly from the government, was accurate recording, so that there was nothing secret… (But) we’ve had patients who have said, ‘I don’t want my family to know.’ But they’re going to find out what the cause of death was; the death certificate is very clear.”</p>
</blockquote>
<p>In cases like this, medical professionals are placed in the difficult position of not being able to accommodate privacy requests of patients or family members, as doing so could undermine ethical obligations of transparency and professional accountability.</p>
<h2>A dignified death vs. a dignified life</h2>
<p>MAID is often celebrated for supporting <a href="https://www.dyingwithdignity.ca/">suffering patients to exercise control and die with dignity</a>. </p>
<p>With the passage of <a href="https://www.justice.gc.ca/eng/csj-sjc/pl/charter-charte/c7.html">Bill C-7</a>, which removed the requirement of a reasonably foreseeable death, Canadians are now applying for MAID when suffering is impacted by socioeconomic factors such as inadequate housing, medical care, food security or income supports. </p>
<p>As a result, there has been growing concern about offering this service in a limited social welfare state <a href="https://www.thestar.com/opinion/contributors/2021/02/11/if-medically-assisted-death-becomes-more-accessible-for-canadians-we-have-a-moral-obligation-to-make-living-well-through-housing-mental-health-supports-accessible-too.html?rf">that does not provide the conditions for people with an illness or disability to live with dignity</a>.</p>
<p>There have been news reports of people being offered MAID when they just needed assistance to live. This has included a <a href="https://www.ctvnews.ca/politics/paralympian-trying-to-get-wheelchair-ramp-says-veterans-affairs-employee-offered-her-assisted-dying-1.6179325">veteran who merely required a wheelchair ramp</a>, individuals who did not have access to food or <a href="https://www.ctvnews.ca/health/woman-with-chemical-sensitivities-chose-medically-assisted-death-after-failed-bid-to-get-better-housing-1.5860579">adequate housing</a> and <a href="https://www.ctvnews.ca/health/the-solution-is-assisted-life-offered-death-terminally-ill-ont-man-files-lawsuit-1.3845190">patients who needed home care</a>. </p>
<p>We have also recently seen <a href="https://www.ctvnews.ca/health/the-number-of-medically-assisted-deaths-in-canada-s-prisons-a-concern-for-some-experts-1.6380440">reports of prisoners who may be requesting MAID to escape the harsh conditions of prison life</a>.</p>
<p>In our research, a participant told us about an individual who had received MAID and might have otherwise benefited from existing programs:</p>
<blockquote>
<p>“There was a (patient) in our community who went through MAID… and his diagnosis was heart failure… (But) he never came to our program and I felt there were a lot of things that we can actually do with these heart failure patients to give them good quality of life.”</p>
</blockquote>
<p>Canadian legal scholar Trudo Lemmens has similarly noted <a href="https://www.cbc.ca/news/opinion/opinion-medical-assistance-in-dying-maid-legislation-1.5790710">that MAID may be quicker to access than certain medical and financial supports</a>, including, for instance, access to specialized long-term care, specialized pain clinics and the <a href="https://www.canada.ca/en/services/benefits/publicpensions/cpp/cpp-disability-benefit.html">Canada Pension Plan Disability Benefits</a>.</p>
<p>“It is crucial that individuals are not placed in a position <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5349713/">where MAID will be seen as the only alternative to suffering</a>.</p>
<p>Unfortunately, we heard from study participants that this issue may be further exacerbated in rural areas with limited access to palliative care. </p>
<blockquote>
<p>"I think some of those patients don’t get the same palliative care that somebody in town would and so maybe they’re opting to do MAID sooner than somebody else would… maybe they didn’t really want to do it but they kind of felt that it was their only option.”</p>
</blockquote>
<p>Another study has already corroborated this concern, noting there is an <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8302435/">inadequate provision of palliative care for those requesting MAID</a>. This is alarming as it signals the reality that MAID requests are sometimes made not out of necessity, but rather due to unmet needs.</p>
<h2>Moving forward</h2>
<p>These tensions surrounding MAID place staff in complex ethical predicaments and are deserving of greater attention. Current policy and legislation do not adequately address how they ought to navigate potential conflicts between palliative care and MAID, between transparency and privacy, or how to best handle MAID requests being made due to unmet socioeconomic or medical needs. </p>
<p>This situation is made worse by the fact that some of our participants felt ill-prepared to step into a MAID-related role due to limited training or support.</p>
<p>We encourage the federal government to reconsider its role in improving the quality of life of its citizens. In many situations, Bill C-7 has made “dying with dignity” easier than “living with dignity.” It is ethically problematic if a state is more willing to facilitate death than to provide the necessities of life.</p><img src="https://counter.theconversation.com/content/205278/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julia Brassolotto receives funding from Alberta Innovates and the Social Sciences and Humanities Research Council (SSHRC). </span></em></p><p class="fine-print"><em><span>Alessandro Manduca-Barone and Monique Sedgwick do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Bill C-7 has created ethical tensions between MAID providers and palliative care, between transparency and patient privacy, and between offering a dignified death rather than a dignified life.Alessandro Manduca-Barone, Research Associate - Faculty of Health Sciences, University of LethbridgeJulia Brassolotto, Associate Professor, Public Health and Alberta Innovates Research Chair, University of LethbridgeMonique Sedgwick, Associate Professor of Nursing, University of LethbridgeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2039612023-04-19T15:58:27Z2023-04-19T15:58:27ZDutch government to expand euthanasia law to include children aged one to 12 – an ethicist’s view<p>Ernst Kuipers, the Dutch health minister, recently <a href="https://www.theguardian.com/society/2023/apr/14/netherlands-to-broaden-euthanasia-rules-to-cover-children-of-all-ages">announced</a> that regulations were being modified to allow doctors to actively end the lives of children aged one to 12 years who were terminally ill and suffering unbearably. </p>
<p>Previously, assisted dying was an option in the Netherlands in rare cases in younger children (under one year) and in some older teenagers who requested voluntary euthanasia. Until now, <a href="https://www.independent.co.uk/news/world/europe/children-euthanasia-belgium-youngest-killed-terminally-ill-cfcee-a8481311.html">Belgium was the only country</a> in the world to allow assisted dying in children under 12.</p>
<p>Under the proposal, it will remain against the law for doctors in the Netherlands to actively end the life of a child under the age of 12. However, a <a href="https://en.wikipedia.org/wiki/Force_majeure">force majeure</a> clause gives prosecutors the discretion not to prosecute in exceptional circumstances. </p>
<p>In 2005, Dutch doctors and legal experts <a href="https://jme.bmj.com/content/39/5/293.short">published guidelines</a> (the so-called “Groningen protocol”) elaborating when these exceptional circumstances would apply for infants under the age of one year. That included certainty about diagnosis and prognosis, “hopeless and unbearable suffering”, the support of both parents and appropriateness confirmed by an independent doctor. </p>
<p>The new regulations <a href="https://www.cambridge.org/core/journals/cambridge-quarterly-of-healthcare-ethics/article/should-the-dutch-law-on-euthanasia-be-expanded-to-include-children/A41751232DBEF2EF8DC32998BB3E2C99">would allow the same principles</a> to apply to children between one and 12 years of age.</p>
<h2>What type of cases would this apply to?</h2>
<p>In a <a href="https://www.dutchnews.nl/news/2020/10/dutch-parliament-to-discuss-possible-new-laws-to-help-suffering-children-to-die/">study</a> commissioned by the Dutch health ministry and released in 2019, <a href="https://zoek.officielebekendmakingen.nl/blg-901797.pdf">researchers investigated</a> the deaths of a large number of children who had died four years earlier. They did not identify any cases where doctors had deliberately hastened death. </p>
<p>However, Dutch paediatricians and parents had <a href="https://www.nvk.nl/themas/kwaliteit/overige-%20kennisdocumenten/document?documentregistrationid=58982400">reported</a> that in a small number of cases, children and families were experiencing distressing suffering at the end of life despite being provided with palliative care. </p>
<p>That included, for example, children with untreatable brain tumours who developed relentless vomiting, screaming, and seizures in their dying phase. Or children with epilepsy resistant to all treatment with tens to hundreds of seizures a day. </p>
<p>The study recommended improvements in access to palliative care for children, as well as altering regulation to provide the option of assisted dying in these extreme cases. </p>
<p>It has been suggested that <a href="https://www.theguardian.com/society/2023/apr/14/netherlands-to-broaden-euthanasia-rules-to-cover-children-of-all-ages">five to ten children a year</a> might be eligible for this option in the Netherlands.</p>
<p>The Dutch proposal is different to <a href="https://link.springer.com/article/10.1007/s40656-022-00554-3#Fn16">the law in Belgium</a>. In 2014, Belgium removed a lower age limit for accessing voluntary euthanasia. </p>
<p>This means that, in theory, Belgian children under the age of 12 years can request assisted dying in strictly limited circumstances, including that they have a terminal illness, have severe suffering that cannot be eased, can understand their circumstances, and their parents agree. </p>
<p>This would not apply to the children covered by the Dutch regulation who are too young or too unwell to make decisions for themselves. Since the Belgian law was passed, <a href="https://link.springer.com/article/10.1007/s40656-022-00554-3">only four cases</a> of assisted dying in minors (under the age of 18) have been reported.</p>
<h2>Is this evidence of a slippery slope?</h2>
<p>The expansion of assisted dying to children in the Netherlands will probably be viewed, by those who are opposed to assisted dying, as further evidence of the so-called “<a href="https://jme.bmj.com/content/19/3/169">slippery slope</a>”. This is the argument that allowing assisted dying in initially limited cases will lead to progressive liberalisation and to much more problematic cases.</p>
<p>The Groningen protocol for young infants was <a href="https://impactethics.ca/2020/03/06/euthanasia-and-slippery-slopes-a-reply-to-chambers/">also claimed</a> to be a clear example of the slippery slope. However, reports from the Netherlands suggest that rather than leading to an increase, there has been a significant <a href="https://www.cambridge.org/core/journals/cambridge-quarterly-of-healthcare-ethics/article/should-the-dutch-law-on-euthanasia-be-expanded-to-include-children/A41751232DBEF2EF8DC32998BB3E2C99">reduction over time</a>.</p>
<p>According to the Dutch health minister, only <a href="https://www.tweedekamer.nl/kamerstukken/brieven_regering/detail?id=2023Z06821&did=2023D16043">two cases</a> in children under one year have been reported since 2007.</p>
<p>The important ethical question is what our society wants doctors to do when faced with the thankfully rare but heartbreaking situation of a child suffering severely at the end of their life. </p>
<p>Should doctors try sedating the child heavily until they are unconscious and wait for the inevitable end? Should doctors do the best they can, but accept that suffering is not always avoidable? Or should they take steps to hasten the child’s death?</p>
<p>In most countries, the last is not a lawful option even if both parents and doctors think that would be kindest for the child. However, in the Netherlands, it appears that this will be available as a last resort, once the new regulations have been approved. Hopefully, it will rarely be needed.</p><img src="https://counter.theconversation.com/content/203961/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dominic Wilkinson receives funding from The Wellcome Trust. </span></em></p>New regulations are being drafted in the Netherlands to allow euthanasia for a small group of children aged one to 12 for whom palliative care is not sufficient.Dominic Wilkinson, Consultant Neonatologist and Professor of Ethics, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1969442023-02-13T19:12:34Z2023-02-13T19:12:34ZThe worthless life and the worthy death: euthanasia through the ages<figure><img src="https://images.theconversation.com/files/508227/original/file-20230206-27-uf23gm.jpg?ixlib=rb-1.1.0&rect=5%2C2%2C839%2C664&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Convalescent – Carolus-Duran (1860).</span> <span class="attribution"><span class="source">Musée d'Orsay/Public Domain</span></span></figcaption></figure><p>Are our moral judgements about euthanasia a product of our time? If we came from a different culture, might our changed views about the worth of life and death lead us to opposite judgements? </p>
<p>Caitlin Mahar’s <a href="https://www.mup.com.au/books/the-good-death-through-time-electronic-book-text">The Good Death Through Time</a> takes us on an intriguing journey through the recent history of our changing ideas about dying well. Mahar focuses on the last 200 years, paying particular attention to developments and debates in England and Australia. </p>
<hr>
<p><em>Review: The Good Death Through Time – Caitlin Mahar (Melbourne University Publishing).</em></p>
<hr>
<p>This attention will no doubt be of special interest to Australian readers. It reminds us that Australia has played a significant role in the development of euthanasia law and practice. </p>
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<a href="https://images.theconversation.com/files/508212/original/file-20230205-15-8m29lt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/508212/original/file-20230205-15-8m29lt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/508212/original/file-20230205-15-8m29lt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=915&fit=crop&dpr=1 600w, https://images.theconversation.com/files/508212/original/file-20230205-15-8m29lt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=915&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/508212/original/file-20230205-15-8m29lt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=915&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/508212/original/file-20230205-15-8m29lt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1150&fit=crop&dpr=1 754w, https://images.theconversation.com/files/508212/original/file-20230205-15-8m29lt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1150&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/508212/original/file-20230205-15-8m29lt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1150&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<p>This involvement includes the work of <a href="https://www.exitinternational.net/about-exit/dr-philip-nitschke/">Dr Philip Nitschke</a> with his <a href="https://www.jstor.org/stable/community.26315324">Euthanasia Machine</a> and, more recently, his <a href="https://www.theguardian.com/society/2018/apr/15/nitschke-suicide-machine-amsterdam-euthanasia-funeral-fair">Sarco</a> suicide pod. It includes the influential arguments of Australian philosophers <a href="https://www.sbs.com.au/news/article/euthanasia-laws-will-prevent-undignified-deaths-bioethicist-peter-singer-says-after-territory-bill-cleared/gd6gfxcux">Peter Singer</a> and <a href="https://en.wikipedia.org/wiki/Helga_Kuhse">Helga Kuhse</a> in their controversial 1985 book <a href="https://philpapers.org/rec/KUHSTB-2">Should the Baby Live?</a></p>
<p>There was also the Northern Territory’s extraordinary but short-lived 1995 <a href="https://en.wikipedia.org/wiki/Rights_of_the_Terminally_Ill_Act_1995#:%7E:text=(Sections%2016%20and%2020).,by%2014%20votes%20to%2011.">Rights of the Terminally Ill</a> legislation: the first ever to legally allow doctors to assist patients to die.</p>
<p>Yet Mahar’s book is about so much more than euthanasia itself. For it turns out there is no <em>one</em> answer as to why we view euthanasia the way we do today, or why changes in euthanasia law are proliferating around the world. </p>
<p>The story of euthanasia is a story about grand ideas: spiritual faith in life after death, foundational views about what makes a worthwhile life, and the nature of our fundamental ethical responsibilities. </p>
<p>But it is also a story about the determined work of committed advocates over the years, doing their best to convince people and deliver policy change. And it is a story of sudden, unexpected events: the tragic life of a young woman trapped on a respirator, a desperate mother’s mercy killing of her son – events that sent shock waves around the world and influenced laws, practices and popular thought in ways no one could have predicted.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-people-choose-medically-assisted-death-revealed-through-conversations-with-nurses-122000">Why people choose medically assisted death revealed through conversations with nurses</a>
</strong>
</em>
</p>
<hr>
<h2>Dying well, with suffering</h2>
<p>Mahar’s book fascinates because it is as much a treatise about social change and contested values as it is an exploration of the ethics of dying well. Perhaps its greatest virtue is the sense that Mahar is not pursuing her own agenda. Instead, she sympathetically explains the different views people have held historically and shows why those perspectives might have made sense, given the beliefs, values and experiences of the time. </p>
<p>In so doing, Mahar allows the reader to grasp the kernels of wisdom housed within very different perspectives. Nowhere is this more apparent than in her exploration of the Victoria era, where views on a death presaged by pain and suffering could hardly differ more from those of today. As Mahar explains, in mid-18th century England it was possible to see an event that today would be viewed as an unmitigated horror – a child’s slow death through tuberculosis – in almost positive terms.</p>
<p>How was this possible? A major reason was the overwhelming focus on the life hereafter. In contrast to a sudden painless death, disease allowed time for attending to the dying person’s spiritual needs. Earthly pains were slight compared to the promise of heaven and the threat of everlasting hell. </p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/508221/original/file-20230205-1584-3bqf1z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/508221/original/file-20230205-1584-3bqf1z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/508221/original/file-20230205-1584-3bqf1z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=910&fit=crop&dpr=1 600w, https://images.theconversation.com/files/508221/original/file-20230205-1584-3bqf1z.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=910&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/508221/original/file-20230205-1584-3bqf1z.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=910&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/508221/original/file-20230205-1584-3bqf1z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1143&fit=crop&dpr=1 754w, https://images.theconversation.com/files/508221/original/file-20230205-1584-3bqf1z.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1143&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/508221/original/file-20230205-1584-3bqf1z.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1143&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Engraving from an edition of Ars Moriendi c.1495.</span>
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</figure>
<p>Moreover, suffering could be understood as a test and preparation for dying. A part of God’s plan, it was a trial that could be overcome through faith. This trial could be guided by formal religious texts, such as the <a href="https://en.wikipedia.org/wiki/Ars_moriendi"><em>Ars Moriendi</em></a> on the art of dying. </p>
<p>The reigning model of the good death was Jesus’ patience and humility on the cross. A child facing death with courage and faith could even be seen as uplifting for the family. Books of the time told stories of the young dying bravely, lauding the elevating spiritual effect this had on those around them. </p>
<p>For these reasons, dying was a ritualised and highly social affair. A priest was often present at the bedside and communities undertook “visiting” duties. Living in a time when enormous suffering and early death was commonplace, dying was not something strange, unimaginable or hidden away; it was a part of cultural life. The invalid was an ever-present figure. </p>
<h2>Mistaken priorities or strange wisdom?</h2>
<p>From the perspective of a more secular age, this can all seem strange and wrongheaded – a horrifyingly mistaken sacrifice of earthly wellbeing to a speculative hereafter and a mystifying appeal to God’s “plan”. It is quite possible to wonder how much the popular discourse and published work of the time failed to genuinely engage with the true hardship of many deaths.</p>
<p>At the same time, Mahar’s sympathetic treatment urges us to consider the possibility that some wisdom was lost as the faith that underpinned these practices began to shift. The cultural convictions of the age made pain understandable and meaningful, at least to some extent. When those convictions and priorities started to change in the late Victoria era, this meaning eroded. </p>
<p>The problem with making pain pointless is that, well, it makes pain pointless. In more spiritual times, suffering was at once less important (compared to the hereafter’s stakes), but more meaningful (as a trial ordained by God). As the modern secular worldview took hold, present suffering became more important and less meaningful. </p>
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<a href="https://images.theconversation.com/files/508784/original/file-20230208-22-lf74uh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/508784/original/file-20230208-22-lf74uh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/508784/original/file-20230208-22-lf74uh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=668&fit=crop&dpr=1 600w, https://images.theconversation.com/files/508784/original/file-20230208-22-lf74uh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=668&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/508784/original/file-20230208-22-lf74uh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=668&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/508784/original/file-20230208-22-lf74uh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=839&fit=crop&dpr=1 754w, https://images.theconversation.com/files/508784/original/file-20230208-22-lf74uh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=839&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/508784/original/file-20230208-22-lf74uh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=839&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Caitlin Mahar.</span>
<span class="attribution"><span class="source">Melbourne University Publishing</span>, <span class="license">Author provided</span></span>
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<p>It was more important because ethical concerns with suffering began to take centre-stage. Influential ideas announced in the late 18th century – Thomas Jefferson’s “<a href="https://www.monticello.org/research-education/thomas-jefferson-encyclopedia/pursuit-happiness/">pursuit of happiness</a>”, Jeremy Bentham’s <a href="https://ethics.org.au/big-thinker-jeremy-bentham/#:%7E:text=Jeremy%20Bentham%20(1748%E2%80%941832),%2Dbeing%20or%20'utility'.">utilitarianism</a> – began to augment the long-held moral virtues of compassion and benevolence. Social attention turned to the horrifying conditions in prisons and asylums, and to the suffering of the dying and diseased. The view that such suffering was a part of God’s plan started to lose ground. </p>
<p>Perplexingly, the result of magnifying the importance of suffering while stripping away its meaning may have – at least in some cases – made people’s suffering worse. The changes undermined the ways in which pain could be rationalised and upset the social rituals that attended it. As the 19th century drew to a close, Mahar notes, some commentators voiced the curious belief that modern people actually feel more pain.</p>
<h2>Eugenics, trust and law</h2>
<p>Victorian views on death and dying are just one of the captivating cultural moments Mahar explores as she traces euthanasia’s waxing and waning prospects through the generations. </p>
<p>There is a necessary discussion of the troubling link between euthanasia and eugenics. The Nazis’ sterilisation, separation and then execution of people with disabilities presaged the Holocaust’s horrors. Many (but not all) euthanasia advocates only argued for voluntary euthanasia that was carried out with the subject’s express consent. Yet the broad euthanasia view – that there are lives not worth living – shared a troubling association with Nazi rhetoric that compromised euthanasia advocacy in post-war Europe. </p>
<p>Mahar also traces the curious mid-20th century moment when the overwhelming trust in doctors pressed against calls to legalise euthanasia. Lawmakers feared legislation would see state bureaucracy intrude on the wisdom of the family doctor making contextual judgements in intimate settings. Surprisingly, euthanasia was resisted in law precisely to allow the continuance of euthanasia as a matter of professional practice.</p>
<p>Then there are the legal cases that established precedents and captured public interest. In England, <a href="https://en.wikipedia.org/wiki/R_v_Adams_(1957)">R v Adams</a> saw a general practitioner put on trial for murder, only for the court to establish a doctor’s legal right to shorten a life, providing they were aiming to relieve pain or distress. </p>
<p>But it was the case of the “girl in a coma” that seized worldwide attention. In 1975, a young American woman, <a href="https://archives.law.virginia.edu/dengrove/writeup/karen-ann-quinlan-and-right-die">Karen Ann Quinlan</a>, collapsed and suffered permanent brain damage. She ended up on life-support with no prospect of recovery. Her tragic situation dramatised the need for a right to die, or at least to pull the plug on life-sustaining medical treatment in certain circumstances.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/disabled-people-were-holocaust-victims-too-they-were-excluded-from-german-society-and-murdered-by-nazi-programs-198298">Disabled people were Holocaust victims, too: they were excluded from German society and murdered by Nazi programs</a>
</strong>
</em>
</p>
<hr>
<h2>Argument, activism, story, strategy</h2>
<p>In each of these cases – and many more besides – Mahar invites the reader to see opposing perspectives and understand the larger cultural forces that shaped them.</p>
<p>As a philosopher, I was intrigued by how important argument remained throughout the history. Across the generations, advocates and critics alike tried to persuade audiences about their proposal’s reasonableness. But argument was only one feature of euthanasia’s long journey from heresy, to serious proposition, to widespread acceptance, and on to legal reality. </p>
<p>Stories – especially when they could seize the popular imagination – were crucial. People imagined themselves trapped on respirators. They were appalled by the injustice of putting a caring mother on trial for the <a href="https://trove.nla.gov.au/newspaper/article/94497278">murder of her mentally impaired son</a>. The heady cocktail of death, illegality and mercy enticed audiences to devour these stories, and encouraged the news media to supply them.</p>
<p>Pictures mattered too. Photos of the grey buses the Nazis used to transport the disabled to their deaths fuelled the visceral German reaction against Peter Singer’s euthanasia advocacy. But the image of a solitary body connected by a tangle of tubes to sterile machines did not fit anyone’s mental picture of a good death.</p>
<p>Strategy also played a crucial role. Advocates and civil society groups have worked patiently and intelligently to develop social awareness, acceptance and support for euthanasia, and to convert that support into tangible legislative outcomes.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/508220/original/file-20230205-15-9agx3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/508220/original/file-20230205-15-9agx3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/508220/original/file-20230205-15-9agx3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/508220/original/file-20230205-15-9agx3t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/508220/original/file-20230205-15-9agx3t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/508220/original/file-20230205-15-9agx3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/508220/original/file-20230205-15-9agx3t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/508220/original/file-20230205-15-9agx3t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Controversial philosopher Peter Singer.</span>
<span class="attribution"><span class="source">Joel Travis Sage/Wikimedia Commons</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<h2>Euthanasia now</h2>
<p>Mahar’s work matters to all of us today, quite apart from the fascinating history it relates. Euthanasia is an issue in Australia in 2023. Voluntary dying will soon be <a href="https://theconversation.com/voluntary-assisted-dying-will-be-available-to-more-australians-this-year-heres-what-to-expect-in-2023-196209">available in all Australian states</a>. The debate is again starting to attract global attention. </p>
<p>For a long time, critics of euthanasia spoke of a slippery slope, arguing that once a clear rule prohibiting (even merciful) killing was removed and the idea that some lives are not worth living became widely accepted, it would be hard to stop the line moving in ever more lenient directions. </p>
<p>They turned out to be right. While current levels of euthanasia in Australian states hover between 0.5% and 1%, Mahar notes the rising number of cases in the Netherlands, where euthanasia makes up 4% of all deaths. Canada, where the rate is 3%, provides a similarly confronting example. <a href="https://www.thefp.com/p/scheduled-to-die-the-rise-of-canadas">Worrying stories</a> have emerged of the ease of access to lethal services, and the scheduled opening of access to “<a href="https://www.dyingwithdignity.ca/blog/pr_mature_minors/">mature minors</a>” as young as twelve.</p>
<p>Perhaps these are good news stories, ethically justified by the right to die and mercifully reducing human fear and suffering. But as we weigh up current controversies, Mahar’s book helps us to place ourselves in a larger history. It reminds us that there are different perspectives on what it means to live well and to die with dignity. </p>
<p>Concerns raised by contemporary disability advocates about euthanasia contain echoes of the old Victorian view. They recast the idea that suffering and disability, and the interdependence they force upon us, might have their own meaning and virtue. </p>
<p>Mahar’s history enriches our understanding as we confront these contemporary challenges, but admirably leaves us free to make up our own minds.</p><img src="https://counter.theconversation.com/content/196944/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Hugh Breakey does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>With euthanasia laws proliferating around the world, Caitlin Mahar’s The Good Death Through Time is a valuable exploration of the history of our shifting views on dying well.Hugh Breakey, Deputy Director, Institute for Ethics, Governance & Law. President, Australian Association for Professional & Applied Ethics., Griffith UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1962092023-01-26T19:05:58Z2023-01-26T19:05:58ZVoluntary assisted dying will be available to more Australians this year. Here’s what to expect in 2023<figure><img src="https://images.theconversation.com/files/502502/original/file-20221222-12-geizwp.jpg?ixlib=rb-1.1.0&rect=0%2C1%2C998%2C559&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hospital-ward-bed-recovering-old-patient-1985507462">Shutterstock</a></span></figcaption></figure><p>By the end of 2023, eligible people in all Australian states will be able to apply for voluntary assisted dying as the final three states’ laws will become <a href="https://end-of-life.qut.edu.au/assisteddying">operational this year</a>.</p>
<p>This year began with Queensland’s voluntary assisted dying law commencing operation on January 1. South Australia is to follow shortly, on January 31, with the New South Wales law to commence on November 28.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1569925237390692352"}"></div></p>
<p>These states join Victoria, Western Australia and Tasmania, whose laws have been operating for more than three years, one year and three months respectively.</p>
<p>The territories may be poised to follow with the Commonwealth’s <a href="https://theconversation.com/territories-free-to-make-their-own-voluntary-assisted-dying-laws-in-landmark-decision-heres-what-happens-next-195291">lifting of an over 25-year ban</a> on territories passing voluntary assisted dying laws. </p>
<p>The Australian Capital Territory has <a href="https://www.justice.act.gov.au/justice-programs-and-initiatives/voluntary-assisted-dying-laws-in-the-act">already signalled</a> it will introduce such laws by 2024 and circulate a discussion paper in coming months.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/territories-free-to-make-their-own-voluntary-assisted-dying-laws-in-landmark-decision-heres-what-happens-next-195291">Territories free to make their own voluntary assisted dying laws, in landmark decision. Here's what happens next</a>
</strong>
</em>
</p>
<hr>
<h2>Hundreds have chosen to die this way</h2>
<p>There is now a clear picture emerging of voluntary assisted dying in Australia, with hundreds choosing this in states where it is legal.</p>
<p>In Victoria, <a href="https://www.safercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-report-of-operations-july-2021-to-june-2022">604 people</a> have been assisted to die in the three years between June 2019 and June 2022 (the latest figures publicly available). Some 75% of people being assisted to die since the law commenced were 65 or older; more than 80% of applicants had cancer. In the last reporting period (July 1 2021 to June 30 2022), deaths from voluntary assisted dying represented 0.58% of deaths in that state.</p>
<p>In WA, uptake has been much higher than expected, with <a href="https://ww2.health.wa.gov.au/%7E/media/Corp/Documents/Health-for/Voluntary-assisted-dying/VAD-Board-Annual-Report-2021-22.pdf">190 people</a> (1.1% of deaths in the state) choosing voluntary assisted dying in the first year. This is more than the <a href="https://www.safercare.vic.gov.au/publications/VADRB-january-to-june-2020">number of Victorians</a> who accessed voluntary assisted dying in the first year, even though WA’s population is much smaller.</p>
<p>In WA, almost 88% of eligible applicants were aged 60 or over and 68% of patients requesting voluntary assisted dying had cancer. </p>
<p>In both states, more than 80% of patients requesting voluntary assisted dying were also receiving <a href="https://theconversation.com/what-is-palliative-care-a-patients-journey-through-the-system-82246">palliative care</a>. Eligible applicants cited the inability to engage in activities that make life enjoyable, and the loss of autonomy, as the two most common reasons for accessing voluntary assisted dying.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-palliative-care-a-patients-journey-through-the-system-82246">What is palliative care? A patient's journey through the system</a>
</strong>
</em>
</p>
<hr>
<h2>How is the system working?</h2>
<p>In Victoria and WA, bodies that oversee voluntary assisted dying have found the system safe. According to <a href="https://www.safercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-report-of-operations-july-2021-to-june-2022">their</a> <a href="https://ww2.health.wa.gov.au/%7E/media/Corp/Documents/Health-for/Voluntary-assisted-dying/VAD-Board-Annual-Report-2021-22.pdf">reports</a>, only people who meet the strict eligibility criteria have been able to access it.</p>
<p>Those providing voluntary assisted dying and state-based services designed to help prospective patients access it <a href="https://ww2.health.wa.gov.au/%7E/media/Corp/Documents/Health-for/Voluntary-assisted-dying/VAD-Board-Annual-Report-2021-22.pdf">have been</a> <a href="https://www.safercare.vic.gov.au/sites/default/files/2022-09/Voluntary%20Assisted%20Dying%20Review%20Board%20Report%20of%20Operations%20July%202021-June%2022_FINAL.pdf">praised</a> as being supportive and compassionate. </p>
<p>However, there are barriers to access, including: </p>
<ul>
<li><p>the statutory prohibition preventing Victorian doctors <a href="https://eprints.qut.edu.au/132073/">initiating conversations</a> about voluntary assisted dying</p></li>
<li><p>Commonwealth restrictions on discussing voluntary assisted dying via <a href="https://eprints.qut.edu.au/207083/">telehealth and email</a></p></li>
<li><p>the need to show evidence of Australian citizenship or permanent residency can <a href="https://onlinelibrary.wiley.com/doi/10.5694/mja2.51123">preclude some long-term residents</a> from accessing voluntary assisted dying if they cannot prove their status</p></li>
<li><p>the lack of <a href="https://ww2.health.wa.gov.au/%7E/media/Corp/Documents/Health-for/Voluntary-assisted-dying/VAD-Board-Annual-Report-2021-22.pdf">eligible doctors</a> <a href="https://www.safercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-report-of-operations-july-2021-to-june-2022">willing to provide</a> voluntary assisted dying</p></li>
<li><p>the lack of <a href="https://eprints.qut.edu.au/236740/">proper remuneration for doctors</a></p></li>
<li><p>lengthy and complicated <a href="https://eprints.qut.edu.au/210873/">administrative processes</a> </p></li>
<li><p>non-participation by some <a href="https://eprints.qut.edu.au/210842/">aged care and health-care providers</a>.</p></li>
</ul>
<p>Many of these issues are heightened in rural and remote areas. </p>
<p>While it is still early days in Tasmania, access issues have already been <a href="https://www.abc.net.au/news/2022-11-28/voluntary-assisted-dying-legal-in-tasmania-but-wait-remains/101703358">reported</a>. These result from a lack of trained doctors, and a complicated and lengthy request and assessment process.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/505493/original/file-20230120-13-ffu6xo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Person sitting on bench looking out at rural view across paddock to mountains" src="https://images.theconversation.com/files/505493/original/file-20230120-13-ffu6xo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/505493/original/file-20230120-13-ffu6xo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/505493/original/file-20230120-13-ffu6xo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/505493/original/file-20230120-13-ffu6xo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/505493/original/file-20230120-13-ffu6xo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/505493/original/file-20230120-13-ffu6xo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/505493/original/file-20230120-13-ffu6xo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Many access issues are heightened in rural and remote areas.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/a-person-sitting-on-a-bench-enjoying-the-mountain-view-13850677/">Robert So/Pexels</a></span>
</figcaption>
</figure>
<h2>How can we address these issues?</h2>
<p>Voluntary assisted dying legislation in each state requires it to be reviewed after a certain period. For both Victoria and WA, this review will begin this year.</p>
<p>But it is not yet clear how these reviews will be conducted, or what evidence considered. </p>
<p>For some issues, law reform might be needed. For others, a policy response may be possible. For example, potential barriers might be addressed through better remuneration for participating practitioners, strategies to support individuals living in rural and remote areas and a more flexible application of the Australian residency rules.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1531385781956521984"}"></div></p>
<p>These mandated reviews present an important opportunity to improve how voluntary assisted dying laws operate in practice. It is pivotal these reviews are <a href="https://www.publish.csiro.au/AH/justaccepted/AH23005">evidence-based</a>. </p>
<p>Fortunately, there is a growing body of published evidence that can guide and inform these reviews – from the bodies that oversee voluntary assisted dying and from research on voluntary assisted dying practice.</p>
<p>Now voluntary assisted dying laws are operational in all Australian states, or will be by the end of the year, the next challenge is to ensure current barriers to access are removed while continuing to ensure the system operates safely. </p>
<hr>
<p><em>Katherine Waller, Project Coordinator, Australian Centre for Health Law Research, Queensland University of Technology, coauthored this article.</em></p><img src="https://counter.theconversation.com/content/196209/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lindy Willmott receives or has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian, Western Australian and Queensland Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. She (with Ben White) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Lindy Willmott is also a member of the Queensland Voluntary Assisted Dying Review Board and the Queensland Civil and Administrative Tribunal. She is a former Board member of Palliative Care Australia.</span></em></p><p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian, Western Australian and Queensland Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. He (with Lindy Willmott) has also developed a model Bill for voluntary assisted dying for parliaments to consider. He is a part-time member of the Queensland Civil and Administrative Tribunal, which has jurisdiction for some aspects of this state's voluntary assisted dying legislation. Ben is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government.</span></em></p><p class="fine-print"><em><span>Katrine Del Villar has been involved (with colleagues) in writing the legislatively-mandated training for doctors involved in voluntary assisted dying in Western Australia and Queensland.</span></em></p>This year sees three more states introduce voluntary assisted dying. But there are still several barriers to overcome.Lindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of TechnologyBen White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of TechnologyKatrine Del Villar, Postdoctoral research fellow, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1952912022-12-01T21:13:38Z2022-12-01T21:13:38ZTerritories free to make their own voluntary assisted dying laws, in landmark decision. Here’s what happens next<figure><img src="https://images.theconversation.com/files/497296/original/file-20221124-14773-fuzdwi.jpg?ixlib=rb-1.1.0&rect=0%2C1%2C1000%2C664&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/focus-on-hand-patient-hospital-ward-589302497">Shutterstock</a></span></figcaption></figure><p>Voluntary assisted dying will soon be an option for the Australian Capital Territory and Northern Territory, now the Senate has just passed a landmark bill.</p>
<p>The <a href="https://amp.abc.net.au/article/101692028">passing</a> of the <a href="https://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query%3DId%3A%22legislation%2Fbillhome%2Fr6889%22">Restoring Territory Rights Bill 2022</a> removes the <a href="https://www.aph.gov.au/Parliamentary_Business/Bills_Legislation/bd/bd2223a/23bd005">key legal barrier</a> for the ACT and NT to introduce their own voluntary assisted dying legislation, should they wish to do so.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1598240836419874816"}"></div></p>
<p>This could see the territories join all six Australian states, which already have voluntary assisted dying legislation.</p>
<p>After extensive consultation, the ACT <a href="https://amp.abc.net.au/article/101692028">will introduce</a> its voluntary assisted dying legislation, with debate expected in late 2023 or early 2024. The NT government has <a href="https://amp.abc.net.au/article/101692028">stated</a> it has no plans to follow suit, at least during this parliamentary term.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-all-states-heres-whats-just-happened-in-nsw-and-what-it-means-for-you-183355">Voluntary assisted dying will soon be legal in all states. Here's what's just happened in NSW and what it means for you</a>
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<h2>The territories once led reform</h2>
<p>Although the territories are now the only Australian jurisdictions without voluntary assisted dying laws, they once led reform in this area. </p>
<p>The ACT was the first Australian jurisdiction to attempt to legalise assisted dying, although its 1993 Voluntary and Natural Death Bill <a href="https://eprints.qut.edu.au/221103/8/_Failed_voluntary_euthanasia_law_reform_in_Australia_Two_decades_of_trends_models_and_politics_NC.pdf">failed to pass</a>.</p>
<p>Shortly after, in 1995, the NT parliament passed the <a href="http://classic.austlii.edu.au/au/legis/nt/consol_act/rottia1995294/">Rights of the Terminally Ill Act</a> – the first operational voluntary assisted dying law, not only in Australia, but in the world.</p>
<p>However, it was the passing of this law that prompted the Commonwealth to remove the territories’ power to legislate in this field. </p>
<p>In 1997, the NT’s act was overturned by the Commonwealth parliament through the <a href="https://www.legislation.gov.au/Details/C2004A05118">Euthanasia Laws Act</a>, introduced by then Liberal backbencher Kevin Andrews. This act also aimed to prevent the territories passing such laws in the future. </p>
<p>The Commonwealth was only able to do this for the territories – not the states – because the Constitution gives the Commonwealth unlimited power to make laws “<a href="https://www.aph.gov.au/About_Parliament/Senate/Powers_practice_n_procedures/Constitution/chapter6#chapter-06_122">for the government of any territory</a>”. </p>
<p><a href="https://www.aph.gov.au/Parliamentary_Business/Bills_Legislation/bd/bd2223a/23bd005">Nine previous bills</a> aiming to restore territory rights on this issue have been introduced into the Commonwealth parliament, but all had failed, until now.</p>
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<h2>The ACT and NT can learn from the states</h2>
<p>If the ACT and NT choose to legalise voluntary assisted dying, they must <a href="https://www.canberratimes.com.au/story/7362400/how-would-the-act-debate-voluntary-assisted-dying/">consider</a> the <a href="https://eprints.qut.edu.au/134902/9/document_3_.pdf">evidence</a> and data from <a href="https://www.safercare.vic.gov.au/publications?f%5B0%5D=agency%3A751&search=voluntary%20assisted%20dying%20review%20board">states</a> where voluntary assisted dying <a href="https://ww2.health.wa.gov.au/%7E/media/Corp/Documents/Health-for/Voluntary-assisted-dying/VAD-Board-Annual-Report-2021-22.pdf">is operational</a>. There is also an opportunity to select the best aspects from each state law.</p>
<p>For instance, for all states <a href="https://theconversation.com/voluntary-assisted-dying-could-soon-be-legal-in-queensland-heres-how-its-bill-differs-from-other-states-161092">except Queensland</a>, for a person to access voluntary assisted dying, they must be expected to die within six months (within 12 months for neurodegenerative conditions). </p>
<p>Given <a href="https://theconversation.com/victorias-voluntary-assisted-dying-scheme-is-challenging-and-complicated-some-people-die-while-they-wait-162094">challenges with delays</a> in getting through the system, the 12-month period adopted by Queensland, or not imposing a specific time limit until death, <a href="https://eprints.qut.edu.au/211733/16/2022_Who_is_Eligible_for_VAD_9_Conditions_across_5_Frameworks_UNSWLJ_.pdf">may allow more time</a> for terminally ill people to navigate access.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/victorias-voluntary-assisted-dying-scheme-is-challenging-and-complicated-some-people-die-while-they-wait-162094">Victoria's voluntary assisted dying scheme is challenging and complicated. Some people die while they wait</a>
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</em>
</p>
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<p>Similarly, all states require a person to live in the state for 12 months before requesting assistance to die. Now voluntary assisted dying is lawful throughout most of Australia, there is little need for this requirement.</p>
<p>The territories may choose to impose <a href="https://theconversation.com/what-happens-if-you-want-access-to-voluntary-assisted-dying-but-your-nursing-home-wont-let-you-183364">minimum legal obligations</a> for how health-care and aged care facilities who do not participate in voluntary assisted dying handle such requests. This is the case in <a href="https://end-of-life.qut.edu.au/assisteddying">Queensland, South Australia and New South Wales</a>.</p>
<p>The territories also may wish to allow eligible people to choose how the medication is administered – they can take it themselves or a health professional can administer it. This <a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-all-states-heres-whats-just-happened-in-nsw-and-what-it-means-for-you-183355">choice is permitted in NSW</a>, whereas other states make self-administration the default method.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/what-happens-if-you-want-access-to-voluntary-assisted-dying-but-your-nursing-home-wont-let-you-183364">What happens if you want access to voluntary assisted dying but your nursing home won't let you?</a>
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<h2>What now for the rest of Australia?</h2>
<p>Of the <a href="https://end-of-life.qut.edu.au/assisteddying">six states</a> with voluntary assisted dying laws, those in Victoria, Western Australia and Tasmania are already operational. </p>
<p>Queensland’s laws will start on January 1 2023, with SA following on January 31. NSW, the final state to pass its laws, will start on November 28.</p>
<p>Should the territories propose their own legislation, we’d anticipate <a href="https://www.cambridge.org/core/services/aop-cambridge-core/content/view/613F5DA2C3BC3F3CD15ED4AE134710C9/9781108489775c12_250-276.pdf/international_perspectives_on_reforming_endoflife_law.pdf">wide consultation and debate</a>.</p>
<p>With territories now permitted to decide this matter for themselves, there is a real prospect for them to have access to voluntary assisted dying in the foreseeable future.</p>
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<p><em>Katherine Waller, Project Coordinator, Australian Centre for Health Law Research, Queensland University of Technology, coauthored this article.</em></p><img src="https://counter.theconversation.com/content/195291/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian, Western Australian and Queensland Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. He (with Lindy Willmott) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Ben White is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government.</span></em></p><p class="fine-print"><em><span>Katrine Del Villar has been involved in designing the legislatively-mandated training provided by the Western Australian and Queensland Governments for health practitioners involved in voluntary assisted dying. </span></em></p><p class="fine-print"><em><span>Lindy Willmott receives or has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian, Western Australian and Queensland Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. She (with Ben White) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Lindy Willmott has also been appointed to the Queensland Voluntary Assisted Dying Review Board. She is a former Board member of Palliative Care Australia. </span></em></p>It’s been a long time coming. But this latest news means the ACT and NT could draw up their own voluntary assisted dying laws, bringing them into line with the states.Ben White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of TechnologyKatrine Del Villar, Postdoctoral research fellow, Queensland University of TechnologyLindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1887172022-08-15T02:47:54Z2022-08-15T02:47:54ZIt’s time to give the ACT and NT stronger voices in parliament<p>With more independents, women, Indigenous Australians and MPs from a multicultural background than ever before, federal parliament seems ready to deal with issues that have been lying dormant for years. </p>
<p>And one of these – highlighted by the heavily contested Senate race in the national capital in May – is the right of the ACT (and the Northern Territory) to enact their own voluntary assisted dying legislation.</p>
<p>The anomaly is especially evident to Canberrans. A person living in the NSW town of Queanbeyan who drives ten or 15 kilometres to work in Canberra has more democratic rights than colleagues who live in the ACT. </p>
<p>At the border they encounter section 122 of the Australian constitution, with its legislative override of ACT democracy – despite self-representation for the ACT having been legislated in 1988 (and 1978 for the NT).</p>
<p>Before self-government, the federal territories minister made all decisions about the ACT. Since 1988, the locally elected ACT Legislative Assembly is responsible for making laws for the ACT, and its counterpart in Darwin makes laws for the NT.</p>
<p>It was section 122 that empowered Coalition frontbencher Kevin Andrews to champion the <a href="https://www.legislation.gov.au/Details/C2004A05118">Euthanasia Laws Act 1997</a>, which reduced the power of the ACT and NT assemblies to make laws permitting doctors to help a terminally ill person end their life. The <a href="https://www.aph.gov.au/Parliamentary_Business/Bills_Legislation/Bills_Search_Results/Result?bId=r6889">Restoring Territory Rights Bill 2022</a>, passed in the house on August 3, is designed to reverse that legislation.</p>
<p>Debate on the bill resumes in the Senate on September 5. If it passes, as looks likely but not certain, it will restore the right of territorians to equality of self-government – at least in this respect, and at least for the time being, given the threat of override is always hanging.</p>
<h2>A long road to self-government</h2>
<p>The road to representation for residents of the ACT and the NT began with the <a href="https://www.foundingdocs.gov.au/resources/transcripts/act11-a1559-1974-39.pdf">Senate (Representation of Territories) Act 1973</a>, passed in August 1974, which allowed for two senators each from the Northern Territory and the ACT in the 1975 and subsequent elections. Each state was represented by ten senators (formerly six), a number that increased to 12 in 1983.</p>
<p>Comparisons make the anomaly obvious. Tasmania, with a population only slightly more than the ACT, has 12 senators while the ACT and the NT are still stuck on two. Back in 1975, the NT’s population was around 100,000; by 2021, according to the census, it was 233,000. </p>
<p>Over the same period the ACT’s population has grown from 200,400 to more than 454,000. In each state, population growth over those 46 years has merited two more senators, but each territory’s representation has stayed at two.</p>
<p>Section 40 of the Commonwealth Electoral Act allows the number of senators in the ACT or the NT to increase beyond two only when the number of House of Representatives seats in the jurisdiction grows to six or more. With the ACT’s House representation now on three, there is little prospect of this. (Tasmania, with 402,000 electors at this year’s election to the ACT’s 314,329, has five lower house seats.)</p>
<h2>A simple but effective change</h2>
<p>But the Commonwealth Electoral Act can be amended by the parliament under section 122 of the Constitution. Doing so would open the Commonwealth’s ear to the ring of Canberra and NT residents’ views about decisions that have a specific impact on the territories. It would also enable smaller parties and independents the same opportunities to reflect the diversity of the territories’ citizenry as they do elsewhere in the country.</p>
<p>Increased representation would also make a bill like the <a href="https://www.legislation.gov.au/Details/C2004A05118">Euthanasia Laws Act 1997</a> much less likely. How? Under the Senate’s proportional representation system, a candidate currently needs 33% of the vote to be elected in the ACT or NT. Increasing the number of Senators to four, but retaining the current three-year terms, would reduce that quota to 20%. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/view-from-the-hill-house-vote-on-allowing-territories-to-legalise-voluntary-assisted-dying-likely-this-week-188000">View from The Hill: House vote on allowing territories to legalise voluntary assisted dying likely this week</a>
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<p>This is still a significant threshold, but it would give smaller parties and independents a real chance at each election of obtaining representation.</p>
<p>This year’s serious contest for the ACT’s Senate places, with the surprise election of an independent candidate, David Pocock, means that the ACT’s needs are for the first time taken seriously by all parties. Labor’s <a href="https://www.aph.gov.au/Parliamentary_Business/Bills_Legislation/Bills_Search_Results/Result?bId=r6889">Restoring Territory Rights Bill 2022</a> is the striking result.</p>
<p>A simple doubling of territory representation in the Senate is nowhere near as dramatic as a proposal for the ACT or the NT to become a state, which would require constitutional change. It is a <a href="https://static1.squarespace.com/static/60dd3f62db3e1b4c462ed537/t/62fad7a4dd1fea44e250fbdb/1660606373077/Draft_Bill_for_Increased_Senate_Representation+Edit.pdf">modest change to legislation</a> that would have a similar practical impact while helping restore democracy in our federal system.</p><img src="https://counter.theconversation.com/content/188717/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kim Rubenstein received funding for earlier research projects from the Australian Research Council. In May this year she and Kim Huynh ran as “Kim for Canberra” candidates for the Senate in the ACT.</span></em></p>There’s a simple way to give territorians better representation – and the time is ripe.Kim Rubenstein, Professor, Academic Director, 50/50 by 2030 Foundation, University of CanberraLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1866252022-07-17T13:26:48Z2022-07-17T13:26:48ZHealth-care providers and MAID: The reasons why some don’t offer medically assisted death<figure><img src="https://images.theconversation.com/files/474342/original/file-20220715-495-eypa2y.jpg?ixlib=rb-1.1.0&rect=8%2C8%2C5218%2C3979&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Several factors ranging from personal spiritual beliefs to patient relationships to medical legal issues can influence whether a health-care practitioner participates in providing medical assistance in dying (MAID).
</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Medical assistance in dying (MAID) was legalized in Canada in 2016. Since then, there have been year-over-year increases in Canadians accessing a MAID death. The most recent data from <a href="https://www.canada.ca/content/dam/hc-sc/documents/services/medical-assistance-dying/annual-report-2020/annual-report-2020-eng.pdf">2019 to 2020 highlights a 34.2 per cent increase</a> in Canadians accessing MAID. </p>
<p>Bill C-7, which passed in June 2021, changed the eligibility criteria by <a href="https://lop.parl.ca/sites/PublicWebsite/default/en_CA/ResearchPublications/LegislativeSummaries/432C7E#a2.1">removing the “natural death has become reasonably foreseeable” requirement</a>. As a result, more Canadians may qualify for MAID.</p>
<p><a href="https://wfrtds.org/wp-content/uploads/2021/02/Report-PAM-Survey-FINAL-.pdf">During the pandemic</a>, 23 per cent of care providers in an international survey reported that assisted death inquiries or requests had “somewhat” or “significantly” increased. MAID and COVID-19 pressures resulted in at least <a href="https://www.thestar.com/news/canada/2021/10/01/nova-scotia-is-pausing-referrals-for-medical-assistance-in-dying-amid-increased-demand-and-covid-strains.html">one Canadian province temporarily pausing referrals for patients wishing to access MAID</a>. </p>
<h2>Non-participation in MAID:</h2>
<p>Health-care providers willing to participate in patient assessment and MAID provision are essential to support Canadians who wish to access MAID. That makes it important to understand the factors that influence practitioners’ decisions to not participate in MAID. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=405&fit=crop&dpr=1 600w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=405&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=405&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=509&fit=crop&dpr=1 754w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=509&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=509&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">David Lametti, Minister of Justice and Attorney General of Canada, delivers a statement on Bill C-7 on Parliament Hill in Ottawa in March 2021. The bill removed the criteria of a reasonably foreseeable death from MAID eligibility.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Sean Kilpatrick</span></span>
</figcaption>
</figure>
<p>As an end-of-life researcher and registered nurse, I investigated this question with the support of my thesis committee. That <a href="https://doi.org/10.1177/10497323211008843">research highlighted</a> the <a href="https://doi.org/10.1177/10497323211027130">complex and interwoven reasons</a> why health-care practioners may not participate in MAID. </p>
<p>These factors can be divided into internal and external factors, but it’s also important to recognize that there are conscience and non-conscience-based factors that influence non-participation. </p>
<h2>Internal factors</h2>
<p>Several personal, or internally originating, factors influenced non-participation. These included a general discomfort in caring for dying patients as well as the provider’s previous personal and work experiences related to death and dying. Also, MAID did not align with some practioners’ approaches to end-of-life care. </p>
<p>Other factors that influenced non-participation included practitioners’ views of their professional duty. MAID did not align with some practitioners’ faith or spiritual beliefs, and some reported they could not imagine being at peace with the decision to participate in medically assisted dying. </p>
<p>Health-care practitioners also considered how they were likely to respond emotionally to participating in MAID. They had concerns about the future impact of MAID participation in terms of their potential risk of post-traumatic stress disorder and burnout.</p>
<h2>External factors</h2>
<ul>
<li><p><strong>Health-care system factors:</strong> The health-care system influenced non-participation. This included working for an organization with an institutional conscientious objection to MAID and the uncertainty of working within a rapidly changing legal landscape in terms of MAID regulation. There were also concerns about adequate access to alternatives to MAID, such as palliative care and chronic care support at home. Some nurse practitioners reported that they did not participate in MAID because of limiting job or practice descriptions at their current employer or a lack of billing codes that would enable them to be paid for these services.</p></li>
<li><p><strong>Community factors:</strong> Reasons for non-participation also included gauging the “community conscience,” perceiving a lack of openness in end-of-life discussions and the dominant religious beliefs of the community. Health-care practitioners were concerned about the impact of having to reduce or cancel other services in an already busy practice to make the time to provide MAID care to a single patient. They were also unsure if or how culture influenced the patient’s perception of MAID, or the patient’s perception of them as health-care practitioners if they participated or if participation would alter the community’s trust in them. </p></li>
</ul>
<figure class="align-center ">
<img alt="Cropped image of a person in a white coat standing behind a seated older person, holding their hand" src="https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=187&fit=crop&dpr=1 600w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=187&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=187&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=234&fit=crop&dpr=1 754w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=234&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=234&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The health-care practitioner-patient relationship influenced non-participation. A long relationship with the patient could make participating in MAID uncomfortable and challenging.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<ul>
<li><p><strong>Practice factors:</strong>
For some health-care practitioners, their decision to not participate in MAID was influenced by a lack of policy and program knowledge or skills to participate in the MAID assessment or provision. Another reasons was adequate pay for the time and overhead costs involved. Others said they lacked understanding about the optimal care model for MAID (such as whether MAID is provided by family medicine practitioners, end-of-life care practitioners or MAID teams). Others identified that MAID was outside their clinical interest and practice strengths.</p></li>
<li><p><strong>Visibility factors:</strong>
How MAID participation would be viewed by colleagues, clinic staff and patients also influenced the non-participation of health-care providers. This included fear of colleagues’ disapproval, fear that participation would harm patient relationships and their relationship with their faith community and a fear that participation would be interpreted as giving up on patients.</p></li>
<li><p><strong>Risk factors:</strong>
Health-care providers contemplated the risk to themselves, their practice and their families. Specifically, the risk associated with professional discipline if the patient or patient’s family disagreed with their assessments, the risk of colleagues making their professional lives difficult and the perceived risk of personal physical harm or violence to themselves or their families. </p></li>
<li><p><strong>Time factors:</strong>
Concerns about competing clinical demands, time-limited appointments that do not accommodate end-of-life conversations and lack of time to offer quality MAID care influenced non-participation as well. Some health-care providers did not wish to take on new practices at their current career stage (for example, close to retirement) and others noted a lack of time to take continuing education in MAID.</p></li>
<li><p><strong>Patient’s family factors:</strong>
Other factors that influenced non-participation in MAID related to the patient’s family. Health-care providers expressed concern that participation would impact the care provided to other family members and that there was a lack of support for the family before, during and after MAID. They also considered the potential challenges of inter-family conflict around the patient’s MAID choice and the impact of the MAID death on future family dynamics.</p></li>
<li><p><strong>Patient relationship factors:</strong>
Another factor was the health-care practitioner/patient relationship. A long relationship with the patient could make participating in MAID uncomfortable and challenging. Others noted that a long history with a patient would support open discussions about their reasons for not participating in MAID. </p></li>
</ul>
<h2>Support for health-care practitioners</h2>
<p><a href="https://hdl.handle.net/10388/13420">My research</a> outlines a model of non-participation in the formal MAID processes. In terms of conscience and non-conscience-based factors, it’s vital to differentiate between a conscientious objection <em>to</em> MAID and non-participation <em>in</em> MAID because health-care practitioners require different support for these. </p>
<p>Steps that might support health-care practitioners who are considering participating in MAID include clarifying regional models of care, which vary between provinces and territories. </p>
<p>Practice-focused MAID education could include not only policy and legal aspects but also pragmatic issues such as obtaining medications and administrative requirements, as well as discussions about relevant factors like communication skills and religious knowledge. </p>
<p>Recognizing the practice issues, time and relationship investment required to provide MAID, and developing fair remuneration policies for health-care practitioners who provide it, may support more participation in MAID.</p>
<p>Supporting health-care practitioners will be vital to a sustainable, healthy health-care system for Canadians.</p><img src="https://counter.theconversation.com/content/186625/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Janine Brown has received funding from the Saskatchewan Health Research Foundation, Canadian Association of MAID Assessors and Providers and Dying with Dignity Canada. </span></em></p>For people to access medical assistance in dying (MAID) requires health-care professionals willing to provide the service. The reasons health-care providers choose not to participate are important.Janine Brown, Assistant Professor, Faculty of Nursing, University of ReginaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1833642022-05-30T20:32:34Z2022-05-30T20:32:34ZWhat happens if you want access to voluntary assisted dying but your nursing home won’t let you?<figure><img src="https://images.theconversation.com/files/465198/original/file-20220525-24-g1ekn6.jpg?ixlib=rb-1.1.0&rect=1%2C1%2C997%2C664&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/birthroom-hospital-equipment-85290190">Shutterstock</a></span></figcaption></figure><p>Voluntary assisted dying is now lawful in <a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-all-states-heres-whats-just-happened-in-nsw-and-what-it-means-for-you-183355">all Australian states</a>. There is also <a href="https://nationalseniors.com.au/uploads/VAD-Report-correct-month-12.8.21.pdf">widespread community support</a> for it.</p>
<p>Yet some residential institutions, such as hospices and aged-care facilities, are obstructing access despite the law not specifying whether they have the legal right to do so. </p>
<p>As voluntary assisted dying is implemented across the country, institutions blocking access to it will likely become more of an issue. </p>
<p>So addressing this will help everyone – institutions, staff, families and, most importantly, people dying in institutions who wish to have control of their end.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-all-states-heres-whats-just-happened-in-nsw-and-what-it-means-for-you-183355">Voluntary assisted dying will soon be legal in all states. Here's what's just happened in NSW and what it means for you</a>
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<h2>The many ways to block access</h2>
<p>While voluntary assisted dying legislation recognises the right of doctors to <a href="https://theconversation.com/was-take-on-assisted-dying-has-many-similarities-with-the-victorian-law-and-some-important-differences-121554">conscientiously object</a> to it, the law is generally silent on the rights of institutions to do so.</p>
<p>While the institution where someone lives has no legislated role in voluntary assisted dying, it can refuse access in various ways, including:</p>
<ul>
<li><p>restricting staff responding to a discussion a resident initiates about voluntary assisted dying</p></li>
<li><p>refusing access to health professionals to facilitate it, and</p></li>
<li><p>requiring people who wish to pursue the option to leave the facility.</p></li>
</ul>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/planning-for-death-must-happen-long-before-the-last-few-days-of-life-104860">Planning for death must happen long before the last few days of life</a>
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<h2>Here’s what happened to ‘Mary’</h2>
<p>Here is a hypothetical example based on cases one of us (Charles Corke) has learned of via his role at Victoria’s <a href="https://www.safercare.vic.gov.au/about/vadrb">Voluntary Assisted Dying Review Board</a>. </p>
<p>We have chosen to combine several different cases into one, to respect the confidentiality of the individuals and organisations involved.</p>
<p>“Mary” was a 72-year-old widow who moved into a private aged-care facility when she could no longer manage independently in her own home due to advanced lung disease.</p>
<p>While her intellect remained intact, she accepted she had reached a stage at which she needed significant assistance. She appreciated the help she received. She liked the staff and they liked her.</p>
<p>After a year in the facility, during which time her lung disease got much worse, Mary decided she wanted access to voluntary assisted dying. Her children were supportive, particularly as this desire was consistent with Mary’s longstanding views. </p>
<p>Mary was open about her wish with the nursing home staff she felt were her friends. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/465200/original/file-20220525-22-3r79vc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Sick elderly patient in hospital bed, nurse wearing gloves holding fingertips" src="https://images.theconversation.com/files/465200/original/file-20220525-22-3r79vc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/465200/original/file-20220525-22-3r79vc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/465200/original/file-20220525-22-3r79vc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/465200/original/file-20220525-22-3r79vc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/465200/original/file-20220525-22-3r79vc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=425&fit=crop&dpr=1 754w, https://images.theconversation.com/files/465200/original/file-20220525-22-3r79vc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=425&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/465200/original/file-20220525-22-3r79vc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=425&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Mary’s condition worsened so she requested voluntary assisted dying.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hospital-ward-senior-female-resting-bed-1985507447">Shutterstock</a></span>
</figcaption>
</figure>
<p>The executive management of the nursing home heard of her intentions. This resulted in a visit at which Mary was told, in no uncertain terms, her wish to access voluntary assisted dying would not be allowed. She would be required to move out, unless she agreed to change her mind. </p>
<p>Mary was upset. Her family was furious. She really didn’t want to move, but really wanted to continue with voluntary assisted dying “in her current home” (as she saw it).</p>
<p>Mary decided to continue with her wish. Her family took her to see two doctors registered to provide assessments for voluntary assisted dying, who didn’t work at the facility. Mary was deemed eligible and the permit was granted. Two pharmacists visited Mary at the nursing home, gave her the medication and instructed her how to mix it and take it. </p>
<p>These actions required no active participation from the nursing home or its staff.</p>
<p>Family and friends arranged to visit at the time Mary indicated she planned to take the medication. She died peacefully, on her own terms, as she wished. The family informed the nursing home staff their mother had died. Neither family nor staff mentioned voluntary assisted dying.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-all-hope-for-a-good-death-but-many-aged-care-residents-are-denied-proper-end-of-life-care-156105">We all hope for a 'good death'. But many aged-care residents are denied proper end-of-life care</a>
</strong>
</em>
</p>
<hr>
<h2>Staff are in a difficult position too</h2>
<p>There is widespread community support for voluntary assisted dying. In a 2021 survey by National Seniors Australia, <a href="https://nationalseniors.com.au/uploads/VAD-Report-correct-month-12.8.21.pdf">more than 85%</a> of seniors agreed it should be available.</p>
<p>So it’s likely there will be staff who are supportive in most institutions. For instance, in a survey of attitudes to voluntary assisted dying in a large public tertiary hospital, <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/imj.15285">88% of staff</a> supported it becoming lawful.</p>
<p>So a blanket policy to refuse dying patients access to voluntary assisted dying is likely to place staff in a difficult position. An institution risks creating a toxic workplace culture, in which clandestine communication and fear become entrenched.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/where-can-you-choose-to-end-your-life-56246">Where can you choose to end your life?</a>
</strong>
</em>
</p>
<hr>
<h2>What could we do better?</h2>
<p><strong>1. Institutions need to be up-front about their policies</strong></p>
<p>Institutions need to be completely open about their policies on voluntary assisted dying and whether they would obstruct any such request in the future. This is so patients and families can factor this into deciding on an institution in the first place.</p>
<p><strong>2. Institutions need to consult their stakeholders</strong></p>
<p>Institutions should consult their stakeholders about their policy with a view to creating a “<a href="https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-021-00891-3">safe</a>” environment for residents and staff – for those who want access to voluntary assisted dying or who wish to support it, and for those who don’t want it and find it confronting.</p>
<p><strong>3. Laws need to change</strong></p>
<p>Future legislation should define the extent of an institution’s right to obstruct a resident’s right to access voluntary assisted dying. </p>
<p>There should be safeguards in all states (as is already legislated <a href="https://documents.parliament.qld.gov.au/tp/2021/5721T707.pdf">in Queensland</a>), including the ability for individuals to be referred in sufficient time to another institution, should they wish to access voluntary assisted dying. </p>
<p>Other states should consider whether it is reasonable to permit a resident, who does not wish to move, to be able to stay and proceed with their wish, without direct involvement of the institution. </p>
<hr>
<p><em>The opinions expressed in this article are those of the authors and do not necessarily reflect the views of Victoria’s Voluntary Assisted Dying Review Board.</em></p><img src="https://counter.theconversation.com/content/183364/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>A/Prof Charlie Corke is Deputy Chair of the Victorian Voluntary Assisted Dying Review Board</span></em></p><p class="fine-print"><em><span>Neera Bhatia does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Aged care facilities and hospices can block access to voluntary assisted dying, despite it being legal in your state.Neera Bhatia, Associate Professor in Law, Deakin UniversityCharles Corke, Associate Professor of Medicine, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1833552022-05-19T03:46:18Z2022-05-19T03:46:18ZVoluntary assisted dying will soon be legal in all states. Here’s what’s just happened in NSW and what it means for you<figure><img src="https://images.theconversation.com/files/464131/original/file-20220518-20-n3i9xs.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5112%2C2874&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hospital-sick-male-patient-sleeps-on-1190997985">Shutterstock</a></span></figcaption></figure><p>The last state in Australia, New South Wales, <a href="https://www.abc.net.au/news/2022-05-19/voluntary-assisted-dying-laws-pass/101079940">has today</a> <a href="https://www.smh.com.au/politics/nsw/voluntary-assisted-dying-legalised-in-nsw-20220519-p5amo0.html">passed its voluntary assisted dying bill</a>. This means the vast majority of the population now lives in a jurisdiction where voluntary assisted dying is, or will be, lawful.</p>
<p>However, voluntary assisted dying is not yet available in NSW. As in other states, there is an 18 month implementation period to establish how it would work.</p>
<p>Here’s what’s just happened in NSW, what can be learned from other states, and what to expect next.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/planning-for-death-must-happen-long-before-the-last-few-days-of-life-104860">Planning for death must happen long before the last few days of life</a>
</strong>
</em>
</p>
<hr>
<h2>What does the NSW legislation say?</h2>
<p>The NSW legislation reflects the broad Australian model of regulating voluntary assisted dying in the other states.</p>
<p>It will be available to an adult with decision-making capacity who has an advanced and progressive illness that will cause death, likely within six months (or 12 months for neurodegenerative conditions). </p>
<p>Other eligibility criteria include the patient is suffering, and their choice is voluntary and enduring. Two senior doctors, who have completed mandatory training, will each conduct a rigorous eligibility assessment. A voluntary assisted dying board will be established to ensure the system is operating safely. </p>
<p>Each state has variations in its voluntary assisted dying laws. One of note in NSW is a person can choose between taking the medication themselves or having a health practitioner administer the medication to them. </p>
<p>In other states, although both methods are allowed, self-administration is the default method.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/factcheck-qanda-do-80-of-australians-and-up-to-70-of-catholics-and-anglicans-support-euthanasia-laws-76079">FactCheck Q&A: do 80% of Australians and up to 70% of Catholics and Anglicans support euthanasia laws?</a>
</strong>
</em>
</p>
<hr>
<h2>What does this mean for people in NSW?</h2>
<p>During the 18 months between the legislation passing and implementation, NSW can benefit from the experience of the <a href="https://end-of-life.qut.edu.au/assisteddying">five other states</a>. </p>
<p>Victoria was the first to have legalised voluntary assisted dying <a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-victoria-and-this-is-what-you-need-to-know-111836">in 2019</a> followed by Western Australia <a href="https://theconversation.com/voluntary-assisted-dying-will-begin-in-wa-this-week-but-one-commonwealth-law-could-get-in-the-way-161982">in 2021</a>. Tasmania, South Australia and Queensland have also passed similar legislation but their laws are not yet in force.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/one-year-of-voluntary-assisted-dying-in-victoria-400-have-registered-despite-obstacles-141054">One year of voluntary assisted dying in Victoria: 400 have registered, despite obstacles</a>
</strong>
</em>
</p>
<hr>
<p>This just leaves the Australian Capital Territory and Northern Territory without voluntary assisted dying laws.</p>
<p>One key lesson for NSW is for people to access voluntary assisted dying, there need to be <a href="https://eprints.qut.edu.au/212110/1/What_the_doctor_would_prescribe_OMEGA_eprints_.pdf">sufficient doctors trained and willing</a> to participate from the start. </p>
<p>This requires the legislatively-mandated training to be ready early, and incentives and supports provided for doctors to undertake it. It also requires knowing which doctors may be open to participating.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-begin-in-wa-this-week-but-one-commonwealth-law-could-get-in-the-way-161982">Voluntary assisted dying will begin in WA this week. But one Commonwealth law could get in the way</a>
</strong>
</em>
</p>
<hr>
<p>A linked issue from Victoria and WA is the critical facilitating role played by “<a href="https://www.health.vic.gov.au/patient-care/getting-support">voluntary assisted dying care navigators</a>”. These health professionals support patients, families and other health professionals who wish to seek or provide voluntary assisted dying, and guide them through the complex eligibility assessment procedure. </p>
<p>This role includes the vital function of connecting patients with doctors. The establishment of this small but critical workforce, well before voluntary assisted dying is available, is essential.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/464134/original/file-20220519-20-eujbju.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Doctor pointing pen to clipboard while patient waits" src="https://images.theconversation.com/files/464134/original/file-20220519-20-eujbju.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/464134/original/file-20220519-20-eujbju.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/464134/original/file-20220519-20-eujbju.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/464134/original/file-20220519-20-eujbju.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/464134/original/file-20220519-20-eujbju.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/464134/original/file-20220519-20-eujbju.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/464134/original/file-20220519-20-eujbju.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">We need enough health staff to support people and their families to navigate the system.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctors-patients-sit-talk-table-near-1182217003">Shutterstock</a></span>
</figcaption>
</figure>
<p>A final observation from other states’ implementation is the importance of education for key stakeholders.</p>
<p>Potentially eligible people can only access voluntary assisted dying if they are aware it exists. So there needs to be a clear public communication strategy to tell the community that voluntary assisted dying is available, and where to find more information. </p>
<p>Building awareness for the broader health workforce (beyond those providing voluntary assisted dying) is also important. </p>
<p>These two groups are linked. <a href="https://eprints.qut.edu.au/199638/8/Community_knowledge_of_law_on_end_of_life_decision_making_An_Australian_telephone_survey_NC.pdf">Evidence</a> shows people wanting more information about end-of-life law are likely to ask health professionals.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-all-hope-for-a-good-death-but-many-aged-care-residents-are-denied-proper-end-of-life-care-156105">We all hope for a 'good death'. But many aged-care residents are denied proper end-of-life care</a>
</strong>
</em>
</p>
<hr>
<h2>What happens in NSW once the law kicks in?</h2>
<p>The end of 2023, when the NSW voluntary assisted dying laws are expected to begin, may seem a long time away. But the experience of other states has been that there is little time to waste. This is a major health, legal and community initiative and implementing it is challenging.</p>
<p>There will be patients seeking access to it as soon as the law begins. So the system must be ready. </p>
<p>In WA, there was higher-than-anticipated early demand. Within the first four months of the law being implemented, <a href="https://www.youtube.com/watch?v=569wRovIEVM">50 terminally-ill people</a> chose to die using voluntary assisted dying. As a state with a significantly larger population, NSW should be anticipating more.</p>
<p>So work must start now to ensure that as soon as the NSW law begins, there is a functional system ready to support people eligible for voluntary assisted dying.</p>
<h2>How about the territories?</h2>
<p>As territories, the NT and ACT <a href="https://eprints.qut.edu.au/221103/8/_Failed_voluntary_euthanasia_law_reform_in_Australia_Two_decades_of_trends_models_and_politics_NC.pdf">cannot legislate</a> on voluntary assisted dying. The Commonwealth passed <a href="http://classic.austlii.edu.au/au/legis/cth/num_act/ela1997161/">legislation</a> in 1997 to prohibit this.</p>
<p>However, there have been <a href="https://www.abc.net.au/news/2022-05-10/calls-to-lift-voluntary-euthanasia-ban-territories-election/101050870">repeated calls</a> for this to change. If this were to occur, this would open the possibility for the territories to follow the lead of the states and pass their own laws permitting voluntary assisted dying.</p><img src="https://counter.theconversation.com/content/183355/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian, Western Australian and Queensland Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. He (with Lindy Willmott) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Ben White is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government.</span></em></p><p class="fine-print"><em><span>Lindy Willmott receives or has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian, Western Australian and Queensland Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. She (with Ben White) has also developed a model Bill for voluntary assisted dying for parliaments to consider.</span></em></p>Voluntary assisted dying is now legal, or will soon will be, in all six states. But we need enough doctors to put their hands up for training.Ben White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of TechnologyLindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1726002021-11-26T02:11:32Z2021-11-26T02:11:32ZVoluntary assisted dying is one step closer in NSW. Now the negotiation starts<figure><img src="https://images.theconversation.com/files/434044/original/file-20211125-25-14k457h.jpg?ixlib=rb-1.1.0&rect=2%2C0%2C995%2C666&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/elderly-senior-aged-patient-on-bed-1576043542">Shutterstock</a></span></figcaption></figure><p>New South Wales is moving closer to legalising voluntary assisted dying. But there are hurdles ahead.</p>
<p>After days of speeches in the NSW lower house, MPs voted yesterday – 53 in favour and 36 against – to consider the <a href="https://www.parliament.nsw.gov.au/bill/files/3891/First%20Print.pdf">Voluntary Assisted Dying Bill 2021</a> in detail.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1463773882796576774"}"></div></p>
<p>Now MPs will consider multiple amendments, largely around proposed safeguards, before the bill returns to the upper house.</p>
<p>So what does this mean for terminally-ill people in NSW?</p>
<p>Independent MP Alex Greenwich tabled the bill in the lower house <a href="https://www.parliament.nsw.gov.au/bills/Pages/bill-details.aspx?pk=3891">last month</a>. The bill largely reflects the voluntary assisted dying legislation passed in other Australian states. </p>
<p>To be eligible for voluntary assisted dying, a person must be:</p>
<ul>
<li><p>an adult with decision-making capacity</p></li>
<li><p>have a condition that is advanced, progressive and will cause death within six months (or 12 months for a neurodegenerative disease)</p></li>
<li><p>be acting voluntarily and not because of pressure or duress</p></li>
<li><p>be experiencing intolerable suffering </p></li>
<li><p>must have lived in NSW for 12 months before their first request for voluntary assisted dying, and</p></li>
<li><p>must be an Australian citizen, permanent resident or a resident of Australia for three years or more.</p></li>
</ul>
<p>As with other states, there is a rigorous request and assessment process. A person must make three requests, and be assessed as eligible by two senior doctors who have completed mandatory training. </p>
<p>After the person has been assessed as eligible, the bill requires one of these senior doctors (the “coordinating” doctor) to apply to the Voluntary Assisted Dying Board for authorisation to proceed.</p>
<p>The bill permits registered health practitioners (doctors, nurses and others) to conscientiously object to participation, a feature of other Australian voluntary assisted dying legislation.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"943365127448928258"}"></div></p>
<p>The bill also regulates the extent to which individual institutions can hinder access to voluntary assisted dying, for instance, by requiring institutions to allow access to voluntary assisted dying in certain situations. This aspect is also a feature of South Australian and Queensland laws. </p>
<p>Consistent with other states, the Voluntary Assisted Dying Board will monitor how the law operates.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-be-debated-in-nsw-parliament-this-week-heres-what-to-expect-169468">Voluntary assisted dying will be debated in NSW parliament this week. Here's what to expect</a>
</strong>
</em>
</p>
<hr>
<h2>What happens next?</h2>
<p>The next step is for MPs to consider the bill in detail. </p>
<p>Judging by the experience of other states, we can expect an onslaught of proposed amendments. Indeed, this has already started, with amendments debated until late last night.</p>
<p>Amendments will likely involve adding new safeguards. In Queensland, for example, proposed amendments included making a psychiatric assessment of someone’s capacity mandatory as part of the eligibility assessment, a requirement for one of the doctors to be a specialist in the person’s illness, and a requirement for a consultation with a palliative care specialist. These amendments were ultimately rejected.</p>
<p>Amendments that introduce more safeguards raise significant barriers to patients accessing voluntary assisted dying. Considered together, the above proposed amendments would have added three new specialist health practitioners to the process, each needing to be available in the person’s location and not have a conscientious objection. The law would have been unworkable.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1463947303148941316"}"></div></p>
<p>It is also important to consider the amendments in the context of the bill as a whole. </p>
<p>The NSW bill is narrow and conservative (like the other Australian models) with extensive procedural safeguards. </p>
<p>The bill currently requires two independent assessments of a person’s capacity to request voluntary assisted dying, by doctors who will be trained on their additional legal duties under the bill. Doctors are also required to refer to an expert if they are unsure about the person’s capacity. When considered in this context, a mandatory psychiatric assessment is unnecessary.</p>
<p>Caution is needed as this last minute “piling on” of safeguards is risky. Amendments would be “add ons” to an established model and run the risk of introducing unintended consequences. They could also make the law unwieldy, incoherent and even unworkable.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/one-year-of-voluntary-assisted-dying-in-victoria-400-have-registered-despite-obstacles-141054">One year of voluntary assisted dying in Victoria: 400 have registered, despite obstacles</a>
</strong>
</em>
</p>
<hr>
<h2>NSW can learn from other jurisdictions</h2>
<p>As NSW is the last state in Australia to be passing such legislation, its MPs have the benefit of multiple parliamentary committees, expert panels and extended parliamentary debates in the other states. </p>
<p>The issues likely to be raised in amendments will not be new. Every other state has already considered, debated and resolved how best to deal with them; this is reflected in the current bill.</p>
<p>MPs in NSW also have the benefit of research on Victoria’s regime, which has been in operation for more than two years. This <a href="https://theconversation.com/victorias-voluntary-assisted-dying-scheme-is-challenging-and-complicated-some-people-die-while-they-wait-162094">reveals</a> participating doctors do not have concerns about safety. Reports from Victoria’s Voluntary Assisted Dying Review Board also <a href="https://www.bettersafercare.vic.gov.au/publications?f%5B0%5D=agency%3A751&search=voluntary%20assisted%20dying%20review%20board">show</a> only eligible people are receiving assistance to die. </p>
<p>There is therefore a heavy onus on MPs proposing amendments to justify why they are needed.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/victorias-voluntary-assisted-dying-scheme-is-challenging-and-complicated-some-people-die-while-they-wait-162094">Victoria's voluntary assisted dying scheme is challenging and complicated. Some people die while they wait</a>
</strong>
</em>
</p>
<hr>
<h2>What should the amendments look like?</h2>
<p>We challenge MPs proposing amendments to answer two questions. </p>
<p>First, what is the new problem the amendments are trying to solve that is not already addressed well? Second, because this law is about terminally-ill patients, what impact would any amendments have on their ability to access voluntary assisted dying?</p>
<p>If the evidence from Victoria is these laws are already safe, how would additional amendments making patient access even harder improve this bill?</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/in-places-where-its-legal-how-many-people-are-ending-their-lives-using-euthanasia-73755">In places where it's legal, how many people are ending their lives using euthanasia?</a>
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</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/172600/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lindy Willmott receives or has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. She (with Ben White) has also developed a model Bill for voluntary assisted dying for parliaments to consider. </span></em></p><p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. He (with Lindy Willmott) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Ben White is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government.</span></em></p>Multiple amendments could make the law unwieldy, incoherent and even unworkable.Lindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of TechnologyBen White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1694682021-10-12T04:57:51Z2021-10-12T04:57:51ZVoluntary assisted dying will be debated in NSW parliament this week. Here’s what to expect<figure><img src="https://images.theconversation.com/files/425842/original/file-20211012-15-1y0qsht.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/reading-lamps-bedroom-near-bed-289401689">Shutterstock</a></span></figcaption></figure><p>Voluntary assisted dying has been available to eligible Victorians for more than two years, and to Western Australians since July 2021. Laws also passed this year in Tasmania, South Australia and Queensland, with schemes to commence after an implementation period.</p>
<p>On <a href="https://www.9news.com.au/national/euthanasia-voluntary-assisted-dying-bill-nsw-what-you-need-to-know-voting-to-be-close/6c0b66a2-bc56-47c8-9af3-c2c4154cc6ec">Thursday</a>, New South Wales parliament will debate a bill drafted by independent MP Alex Greenwich. It’s still unclear which way the numbers will go, and whether the bill will pass – it’s likely to be a tight vote. </p>
<p>So how does this bill compare with other state laws? And what should voting MPs take into account?</p>
<h2>How is it similar to other state laws?</h2>
<p>Overall, the NSW bill reflects the broad Australian voluntary assisted dying model. The eligibility criteria, which determine who can access the scheme, are strict, and note the person must have:</p>
<ul>
<li>decision-making capacity</li>
<li>a condition that is advanced, progressive and will cause death within six months (or 12 months for a neurodegenerative disease), and which causes intolerable suffering.</li>
</ul>
<p>The request and assessment process also largely reflects laws of other states, including that the person must make three requests, and be assessed as eligible by two senior doctors who have completed mandatory training. </p>
<p>After the patient is assessed as eligible, the NSW bill requires the doctor to apply to the Voluntary Assisted Dying Board for authorisation to proceed. This requirement, which <a href="https://eprints.qut.edu.au/210873/">we argue</a> delays the process without adding any further safeguard, is also contained in the Victorian, Tasmanian and South Australian legislation. </p>
<figure class="align-center ">
<img alt="Old man sitting on a park bench." src="https://images.theconversation.com/files/425845/original/file-20211012-16-yzjes4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/425845/original/file-20211012-16-yzjes4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/425845/original/file-20211012-16-yzjes4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/425845/original/file-20211012-16-yzjes4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/425845/original/file-20211012-16-yzjes4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/425845/original/file-20211012-16-yzjes4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/425845/original/file-20211012-16-yzjes4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The doctor must apply for authorisation to proceed.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/old-man-senior-sitting-on-bench-1678154692">Shutterstock</a></span>
</figcaption>
</figure>
<p>The NSW bill permits health professionals to conscientiously object to participation, a feature of all Australian Acts. It also regulates the extent to which institutions can refuse to provide the service. This is also dealt with in the South Australian and Queensland laws. </p>
<p>Consistent with other states, a board will be established to monitor the operation of the NSW Act.</p>
<h2>How is it different to other states?</h2>
<p>The proposed NSW model differs from (most of) the other laws in two main ways. </p>
<p>First, the period between the person’s first and final request for voluntary assisted dying is five days. It’s nine days in most of the other states, though it’s shorter in Tasmania. </p>
<p>This period may have been shortened in light of <a href="https://theconversation.com/victorias-voluntary-assisted-dying-scheme-is-challenging-and-complicated-some-people-die-while-they-wait-162094">emerging evidence from Victoria</a> that patients sometimes die during the process. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/victorias-voluntary-assisted-dying-scheme-is-challenging-and-complicated-some-people-die-while-they-wait-162094">Victoria's voluntary assisted dying scheme is challenging and complicated. Some people die while they wait</a>
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</em>
</p>
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<p>The second difference is the patient is able to choose between self-administration (where they consume the substance themselves) and practitioner administration (where the doctor administers the substance). </p>
<p>In other states, self-administration is the default method, although the states vary regarding when practitioner administration is permitted. </p>
<h2>What happened recently in Queensland?</h2>
<p>If the recent Queensland experience is anything to go by, the NSW debate will be calm and measured and, for some MPs, informed by the <a href="https://theconversation.com/victorias-voluntary-assisted-dying-scheme-is-challenging-and-complicated-some-people-die-while-they-wait-162094">emerging body of evidence</a> on how the scheme has been operating in Victoria to date. </p>
<p>Queensland passed the legislation by a majority of 61:30 after a debate over three days. Two issues were prominent: </p>
<ol>
<li><p>the need for greater funding for palliative care (for which there was unanimous support)</p></li>
<li><p>the extent to which the Queensland public wanted choice at the end of life. </p></li>
</ol>
<p>The argument that vulnerable cohorts will disproportionately seek voluntary assisted dying was raised, but did not feature prominently – perhaps because this claim is <a href="https://pubmed.ncbi.nlm.nih.gov/27380345/">not supported by the evidence</a>.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-could-soon-be-legal-in-queensland-heres-how-its-bill-differs-from-other-states-161092">Voluntary assisted dying could soon be legal in Queensland. Here's how its bill differs from other states</a>
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<p>In voting against the bill, Queensland MP Andrew Powell declared his Christian <a href="https://documents.parliament.qld.gov.au/events/han/2021/2021_09_14_WEEKLY.pdf">beliefs influenced his decision</a>, but said “it pains me to disappoint many in my electorate”. </p>
<p>While Mr Powell is to be commended for his transparency, he chose his own religious convictions to guide his vote, rather than seeking to reflect the values of the majority in his electorate. </p>
<h2>How is the debate likely to play out in NSW?</h2>
<p>Voluntary assisted dying has been debated in NSW on multiple occasions <a href="https://eprints.qut.edu.au/95429/">between 1997 and 2017</a>. The Greens initiated most bills, though the 2017 Bill – which lost by only one vote in the Legislative Council – was introduced by Nationals MP Trevor Khan.</p>
<p>This time the debate will occur in an unusual political environment. New premier Dominic Perrottet describes himself as a practising Catholic and opposes voluntary assisted dying. Deputy premier <a href="https://www.lithgowmercury.com.au/story/4419541/toole-to-oppose-assisted-dying-bill/">Paul Toole</a> opposed the previous voluntary assisted dying bill that was debated in NSW and <a href="https://www.skynews.com.au/australia-news/politics/i-dont-support-voluntary-assisted-dying-chris-minns/video/99fd6d1947e5a170a87b084ea25f6974">Labor leader Chris Minns</a> also opposes voluntary assisted dying.</p>
<p>Perrottet will allow a conscience vote, as has been the convention for such bills in Australia for more than 20 years.</p>
<p>The NSW bill will be introduced by an independent, but has <a href="https://www.sbs.com.au/news/voluntary-assisted-dying-bill-to-be-introduced-to-nsw-parliament-his-week/2457c131-7dd0-4435-a136-8abcd795f99a">around 30 signatories</a>, including government and cross-bench members. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/factcheck-qanda-do-80-of-australians-and-up-to-70-of-catholics-and-anglicans-support-euthanasia-laws-76079">FactCheck Q&A: do 80% of Australians and up to 70% of Catholics and Anglicans support euthanasia laws?</a>
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<p>MPs should rightly consider a range of factors during this debate, including how the bill <a href="https://eprints.qut.edu.au/200646/">achieves its policy objectives</a> and how the <a href="https://eprints.qut.edu.au/212268/1/Voluntary_assisted_dying_research_policy_briefing_White_and_Willmott_Aug_2021_WEB.pdf">many safeguards will operate</a>. </p>
<p>But MPs must also be transparent about the <a href="https://theconversation.com/as-victorian-mps-debate-assisted-dying-it-is-vital-they-examine-the-evidence-not-just-the-rhetoric-84195">values that guide their decision</a>. Does their vote reflect their own values, or are they seeking to reflect the views of the majority of their constituents?</p>
<p><em>Update: This article was amended after publication to clarify deputy premier Paul Toole opposed the previous bill that was debated in NSW.</em></p><img src="https://counter.theconversation.com/content/169468/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lindy Willmott has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. She (with Ben White) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Lindy Willmott is a former member of the board of Palliative Care Australia.</span></em></p><p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. He (with Lindy Willmott) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Ben White is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government.</span></em></p>The proposed NSW legislation is similar to other states, including replicating a key flaw.Lindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of TechnologyBen White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1620942021-06-27T19:50:02Z2021-06-27T19:50:02ZVictoria’s voluntary assisted dying scheme is challenging and complicated. Some people die while they wait<figure><img src="https://images.theconversation.com/files/408103/original/file-20210624-13-xmh041.jpg?ixlib=rb-1.1.0&rect=15%2C5%2C3479%2C2321&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/old-man-senior-sitting-on-bench-1678154692">Shutterstock</a></span></figcaption></figure><p>Voluntary assisted dying laws, which allow terminally ill people who meet strict eligibility criteria to end their life, have been operating in Victoria for two years. The laws are underpinned by <a href="https://eprints.qut.edu.au/200646/8/02_WHITE_ET_AL.pdf">two central pillars</a>: safety and access. </p>
<p>Safety means the only patients who can access assistance to die are those who meet the eligibility criteria set out in the legislation. This means terminally ill adults who are suffering and expected to die within six months (12 months for neurodegenerative conditions). </p>
<p>Access refers to the ability of patients who meet the eligibility criteria, and want voluntary assisted dying, to actually use the laws. This depends on the process not taking too long or being so challenging that a patient just gives up, or dies before access is granted.</p>
<p>Our research papers, <a href="https://www.mja.com.au/journal/2021/215/3/participating-doctors-perspectives-regulation-voluntary-assisted-dying-victoria">published today</a> in the Medical Journal of Australia and <a href="https://eprints.qut.edu.au/210873/1/Submitted_Version_Prospective_oversight_BMJ.pdf">recently</a> in BMJ Supportive and Palliative Care, found doctors involved with the Victorian scheme have concerns about access, but not about safety.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/without-more-detail-its-premature-to-say-voluntary-assisted-dying-laws-in-victoria-are-working-well-132096">Without more detail, it's premature to say voluntary assisted dying laws in Victoria are 'working well'</a>
</strong>
</em>
</p>
<hr>
<p>A major barrier to patients’ access is the requirement for the doctor to obtain a permit from the government. This is a key component of the system’s oversight. It involves a formal application to a government official who decides within three business days whether the legislation’s processes have been followed and certain criteria met.</p>
<p>The government permit is a feature of the Victorian law, and one which <a href="https://www.legislation.tas.gov.au/view/html/asmade/act-2021-001">Tasmania</a> and <a href="https://www.legislation.sa.gov.au/LZ/B/CURRENT/VOLUNTARY%20ASSISTED%20DYING%20BILL%202020_HON%20KYAM%20MAHER%20MLC.aspx">South Australia</a> have copied. </p>
<p>But not all Australian states have followed suit. The <a href="https://www.legislation.wa.gov.au/legislation/statutes.nsf/law_a147242.html">Western Australian law</a>, which comes into effect this week, does not include a permit process, nor does <a href="https://www.parliament.qld.gov.au/documents/tableOffice/TabledPapers/2021/5721T707.pdf">Queensland’s bill</a>. We prefer the WA and Queensland model.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-could-soon-be-legal-in-queensland-heres-how-its-bill-differs-from-other-states-161092">Voluntary assisted dying could soon be legal in Queensland. Here's how its bill differs from other states</a>
</strong>
</em>
</p>
<hr>
<h2>Barriers to access</h2>
<p>To understand how the Victorian system is operating, we interviewed 32 doctors who had provided voluntary assisted dying services to patients, to hear about their experience of the system in its first year. </p>
<p>When talking about the <a href="https://eprints.qut.edu.au/210873/1/Submitted_Version_Prospective_oversight_BMJ.pdf">prior oversight and approval process</a>, most said they were concerned about navigating the system, including the layers of approval required, the “bureaucracy” involved in the process, and challenges with the mandatory online system for submitting forms. This led to delays in patients accessing the system.</p>
<p>The doctors we interviewed also raised concerns about prior oversight and approval being a barrier to very sick patients accessing the scheme. One described “people dying going through this process”. Another said: “if you’re unwell and you really need it, it doesn’t work”. </p>
<p>Another doctor said: </p>
<blockquote>
<p>Of the patients that I’ve been working with, only four have been able to get through to the completion of the process. It’s been one of our issues […] it is complicated and because there’s a lot of bureaucracy to encounter and a lot of hurdles to jump […]</p>
</blockquote>
<p>Despite concerns about the system, some doctors in our study considered having prior oversight and approval protected them and ensured the system’s safety.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/one-year-of-voluntary-assisted-dying-in-victoria-400-have-registered-despite-obstacles-141054">One year of voluntary assisted dying in Victoria: 400 have registered, despite obstacles</a>
</strong>
</em>
</p>
<hr>
<h2>Seeking government approval isn’t the norm</h2>
<p>Requiring prior approval of voluntary assisted dying is very unusual. Around the world, <a href="https://eprints.qut.edu.au/210873/1/Submitted_Version_Prospective_oversight_BMJ.pdf">only the Victorian and Colombian systems</a> require external prior approval. </p>
<p>However, other places are now considering or implementing this model, such as Tasmania and SA, whose laws which are yet to come into force. </p>
<p>Currently, all other voluntary assisted dying systems internationally use retrospective review of cases to ensure the system remains safe. With retrospective review, doctors can approve access to the scheme, and their decisions are later examined by review committees.</p>
<p>If voluntary assisted dying has been inappropriately granted, the doctor may face possible sanctions or criminal prosecution. But the doctors don’t need to get government permission first.</p>
<h2>Access must be a priority too</h2>
<p>Parliaments debating new voluntary assisted dying laws and governments implementing existing ones must keep in mind the people who are intended to use it, who by virtue of the eligibility criteria, are terminally ill and suffering. </p>
<p>They must ensure the design and implementation of the system meets these patients’ needs. This includes thinking critically about the potential cost to access of some safeguards. </p>
<figure class="align-center ">
<img alt="Bedroom with bedside lamp on." src="https://images.theconversation.com/files/408277/original/file-20210624-13-pfz3qf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/408277/original/file-20210624-13-pfz3qf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/408277/original/file-20210624-13-pfz3qf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/408277/original/file-20210624-13-pfz3qf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/408277/original/file-20210624-13-pfz3qf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/408277/original/file-20210624-13-pfz3qf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/408277/original/file-20210624-13-pfz3qf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The scheme needs to be accessible for those who meet the criteria and intend to use it.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/reading-lamps-bedroom-near-bed-289401689">Shutterstock</a></span>
</figcaption>
</figure>
<p>Given that prior oversight and approval is rare internationally and the difficult Victorian experience with it, we consider this is not desirable, or needed. </p>
<p>However, where laws require such prior approval, system design must ensure this is done efficiently. This includes avoiding bureaucracy that doesn’t directly improve patient safety, and an optimal information technology system. This will help to at least minimise delays that could preclude dying patients accessing the system.</p><img src="https://counter.theconversation.com/content/162094/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. He (with Lindy Willmott) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Ben White is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government.</span></em></p><p class="fine-print"><em><span>Lindy Willmott has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. She (with Ben White) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Lindy Willmott is a former member of the board of Palliative Care Australia.</span></em></p><p class="fine-print"><em><span>Marcus Sellars does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Interviews with 32 doctors who provided voluntary assisted dying services in Victoria found layers of bureaucracy made it difficult for patients to access the system. Some died while waiting.Ben White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of TechnologyLindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of TechnologyMarcus Sellars, Research Fellow (Qualitative Researcher), Australian National UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1610922021-05-19T05:23:45Z2021-05-19T05:23:45ZVoluntary assisted dying could soon be legal in Queensland. Here’s how its bill differs from other states<figure><img src="https://images.theconversation.com/files/401473/original/file-20210519-13-186tcjv.jpg?ixlib=rb-1.1.0&rect=5%2C0%2C3988%2C2664&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Queensland has become the latest Australian state to move forward on the issue of voluntary assisted dying. Draft legislation, developed by the <a href="https://www.qlrc.qld.gov.au/recently-completed-reviews#VAD">Queensland Law Reform Commission</a>, is expected to be <a href="https://www.abc.net.au/news/2021-05-18/qld-government-to-introduce-voluntary-assisted-dying-legislation/100146110">tabled in parliament next week</a>.</p>
<p>This reflects moves across the country over the past few years to permit voluntary assisted dying (also sometimes called voluntary euthanasia). </p>
<p>The Queensland laws, if passed, would be similar to those in other states, but not identical.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1394516640679612417"}"></div></p>
<h2>A quick recap</h2>
<p>Victoria’s law was passed in November 2017 and came into force in June 2019 after an <a href="https://theconversation.com/we-dont-know-all-the-details-of-how-voluntary-assisted-dying-will-work-yet-but-the-system-is-ready-117827">18-month implementation period</a>. </p>
<p>Next was Western Australia, whose 2019 law will come into effect on <a href="https://ww2.health.wa.gov.au/voluntaryassisteddying">July 1, 2021</a>. </p>
<p>Tasmania passed a voluntary assisted dying law in March <a href="https://www.abc.net.au/news/2021-03-23/tasmania-passes-assisted-dying-legislation/100024852">this year</a>, set to begin in 2022.</p>
<p>And South Australia’s lower house is now considering its own bill, after the <a href="https://www.abc.net.au/news/2021-05-06/sa-legislative-council-supports-voluntary-euthanasia-bill/100119076">upper house approved the proposed law</a> earlier this month.</p>
<p>In New South Wales, <a href="https://www.alexgreenwich.com/vad_update">independent MP Alex Greenwich</a> is drafting a voluntary assisted dying law. It’s due to be released in July for consultation. </p>
<p>The Australian Capital Territory and the Northern Territory don’t have legislative power to pass laws about voluntary assisted dying. But there are <a href="https://www.abc.net.au/news/2020-11-10/act-government-pushes-for-right-to-pass-euthanasia-laws-canberra/12862300">active efforts</a> to repeal the Commonwealth law that prohibits the territories considering it.</p>
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<strong>
Read more:
<a href="https://theconversation.com/was-take-on-assisted-dying-has-many-similarities-with-the-victorian-law-and-some-important-differences-121554">WA's take on assisted dying has many similarities with the Victorian law – and some important differences</a>
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<h2>Reflecting on Victoria’s experience</h2>
<p>In preparing the draft legislation, the Queensland Law Reform Commission had the opportunity to reflect on the emerging body of evidence about how the Victorian law is operating in practice.</p>
<p>While the safeguards in Victoria’s voluntary assisted dying system <a href="https://www.bettersafercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-report-of-operations-july-to-december-2020">are working</a> to ensure only eligible patients can access it, questions have been raised <a href="https://www.abc.net.au/news/2021-05-07/voluntary-euthanasia-laws-how-well-are-they-working/100117058">about challenges</a> in accessing the law. For example, some people don’t necessarily know the option exists, while navigating the eligibility assessment process can be demanding.</p>
<p>Background like this from Victoria’s experience led the commission to recommend some departures from laws enacted elsewhere in Australia. </p>
<figure class="align-center ">
<img alt="An elderly man sits in a wheelchair in parkland." src="https://images.theconversation.com/files/401475/original/file-20210519-17-4m18zy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/401475/original/file-20210519-17-4m18zy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/401475/original/file-20210519-17-4m18zy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/401475/original/file-20210519-17-4m18zy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/401475/original/file-20210519-17-4m18zy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/401475/original/file-20210519-17-4m18zy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/401475/original/file-20210519-17-4m18zy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">In Victoria, voluntary assisted dying laws have been operating for almost two years.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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</figure>
<p>The <a href="https://www.qlrc.qld.gov.au/__data/assets/pdf_file/0020/681131/qlrc-report-79-a-legal-framework-for-voluntary-assisted-dying.pdf">commission’s approach</a> aimed to design “the best legal framework for a voluntary assisted dying scheme in Queensland” and not to be “constrained by similar laws in other Australian states”.</p>
<p>In other words, the focus was on designing optimal law, rather than simply adopting another state’s law because it happened to be passed first.</p>
<h2>How is Queensland’s proposed law different?</h2>
<p>Some features are common to all <a href="https://eprints.qut.edu.au/200646/">Australian voluntary assisted dying laws</a>. For example, eligibility criteria broadly include requirements that a person has an advanced and progressive condition that will cause death, and they are suffering intolerably from it. The person must also be an adult, have decision-making capacity, be acting voluntarily and satisfy various residency requirements.</p>
<p>The Queensland proposal’s eligibility criteria are different in relation to the person’s life expectancy. A person is eligible for voluntary assisted dying under the <a href="https://www.qlrc.qld.gov.au/__data/assets/pdf_file/0020/681131/qlrc-report-79-a-legal-framework-for-voluntary-assisted-dying.pdf">Queensland bill</a> if they are expected to die within 12 months. Under <a href="https://eprints.qut.edu.au/200646/">other Australian models</a>, the period is six months, except for progressive neurological conditions, in which case it’s 12 months.</p>
<p>Although some commentators (<a href="https://eprints.qut.edu.au/198052/">including us</a>) question the need for a designated time period, a 12-month limit is a more coherent approach than the existing six or 12-month approach elsewhere. </p>
<p>First, it’s <a href="https://eprints.qut.edu.au/200646/">very hard to justify</a> having different time limits to access voluntary assisted dying depending on the nature of your illness. </p>
<p>Second, a longer eligibility period allows a person who is diagnosed with a medical condition more time to apply for voluntary assisted dying. This may allow patients to start the application process a little earlier, and reduce the likelihood they may die before accessing voluntary assisted dying (given the process can take some time).</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-is-not-a-black-and-white-issue-for-christians-they-can-in-good-faith-support-it-81671">Voluntary assisted dying is not a black-and-white issue for Christians – they can, in good faith, support it</a>
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<p>Another novel feature is the Queensland bill limits the ability of institutions to object to voluntary assisted dying. This is an Australian-first as Victorian, Western Australian and Tasmanian laws only deal with permitting individual health professionals to conscientiously object.</p>
<p>This is important because there’s <a href="http://www.unswlawjournal.unsw.edu.au/wp-content/uploads/2021/05/2021-3-White-et-al.pdf">evidence</a> in Victoria that institutions are blocking access to voluntary assisted dying. One <a href="https://www.smh.com.au/national/discriminatory-and-unethical-palliative-care-service-criticised-over-failure-to-verify-euthanasia-deaths-20210415-p57jif.html">media report</a> described a Catholic hospice barring access to pharmacists delivering the voluntary assisted dying medication to a patient.</p>
<p>The commission recommends creating legislative processes so eligible patients’ access to voluntary assisted dying is not unreasonably hindered by institutional objections.</p>
<figure class="align-center ">
<img alt="A woman wearing an oxygen mask lies in a hospital bed. Another woman is comforting her." src="https://images.theconversation.com/files/401477/original/file-20210519-19-100mt2r.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/401477/original/file-20210519-19-100mt2r.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/401477/original/file-20210519-19-100mt2r.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/401477/original/file-20210519-19-100mt2r.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/401477/original/file-20210519-19-100mt2r.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/401477/original/file-20210519-19-100mt2r.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/401477/original/file-20210519-19-100mt2r.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">A person could be eligible for voluntary assisted dying under Queensland’s proposal if they are expected to die within 12 months.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>Will the Queensland bill become law?</h2>
<p>After the bill is <a href="https://www.abc.net.au/news/2021-05-18/qld-government-to-introduce-voluntary-assisted-dying-legislation/100146110">tabled</a> in Queensland parliament next week, it will be referred to the Parliamentary Health Committee (<a href="https://www.parliament.qld.gov.au/work-of-committees/former-committees/HCDSDFVPC/inquiries/past-inquiries/AgedCareEOLPC">which originally recommended reform</a>). That committee will have a consultation period of 12 weeks. </p>
<p>Parliament is expected to vote on the bill in September, and if the law is passed, it will likely come into effect in January 2023. As <a href="https://eprints.qut.edu.au/126415/">in other states</a>, a period of implementation ensures the voluntary assisted dying system is ready before the law takes effect.</p>
<p>As is usually the case in such debates, both major parties have <a href="https://www.abc.net.au/news/2021-05-19/qld-voluntary-assisted-dying-legislation-reaction/100146762">offered their MPs a conscience vote</a>. Although Queensland is the <a href="https://eprints.qut.edu.au/95429/">only Australian state</a> never to have considered a voluntary assisted dying bill, its single house of parliament may mean the law is more likely to pass. </p>
<p>Further, given the growing <a href="https://eprints.qut.edu.au/123038/">national trend</a> to permit voluntary assisted dying and the careful and measured law reform process, we anticipate Queensland is likely to pass voluntary assisted dying laws this year.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/from-oregon-to-belgium-to-victoria-the-different-ways-suffering-patients-are-allowed-to-die-88324">From Oregon to Belgium to Victoria – the different ways suffering patients are allowed to die</a>
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</em>
</p>
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<img src="https://counter.theconversation.com/content/161092/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care.
In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. He (with Lindy Willmott) has also developed a model Bill for voluntary assisted dying for parliaments to consider. Ben White is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government.</span></em></p><p class="fine-print"><em><span>Lindy Willmott has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and State Governments for research and training about the law, policy and practice relating to end-of-life care.
In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian and Western Australian Governments to design and provide the legislatively-mandated training for doctors involved in voluntary assisted dying in those States. She (with Ben White) has also developed a model Bill for voluntary assisted dying for parliaments to consider.
Lindy Willmott is a former member of the board of Palliative Care Australia.
</span></em></p>Draft legislation which would see voluntary assisted dying allowed in Queensland will be introduced into the state’s parliament next week. So how does the proposed law compare to other states?Ben White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of TechnologyLindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1560122021-02-28T13:36:42Z2021-02-28T13:36:42ZMedical assistance in dying for mental illness ignores safeguards for vulnerable people<figure><img src="https://images.theconversation.com/files/386569/original/file-20210225-19-awxcaq.jpg?ixlib=rb-1.1.0&rect=11%2C2%2C1813%2C1152&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Bill C-7 seeks to expand access to medical assistance in dying (MAID) to people who are not terminally ill, including those who suffer solely from mental illness.</span> <span class="attribution"><span class="source">(Pixabay)</span></span></figcaption></figure><p>The federal government’s proposed <a href="https://www.justice.gc.ca/eng/csj-sjc/pl/charter-charte/c7.html">Bill C-7 seeks to expand access to medical assistance in dying</a> (MAID) to people whose death is not reasonably foreseeable, significantly reducing the safeguards that protect vulnerable people. </p>
<p>The bill was <a href="https://www.cbc.ca/news/politics/senate-maid-bill-third-reaading-pass-1.5917798">reviewed by the Senate in February</a> and returned to the House of Commons with amendments that would broaden access even further. </p>
<p>People whose suffering is caused by mental illness alone do not currently have access to MAID. However, the Senate recommended Bill C-7 contain a “sunset clause” that would lift this exclusion in 18 months. The <a href="https://www.ourcommons.ca/DocumentViewer/en/43-2/house/sitting-64/order-notice/page-13">Trudeau government has extended the clause to 24 months</a> but has otherwise accepted it, meaning that in 18 to 24 months, MAID will be provided to those suffering solely from a mental illness.</p>
<p>Notwithstanding diverse opinions on this issue, the real question is not about whether MAID should be offered for mental illness. It’s whether mental illnesses could possibly qualify for MAID under conditions the Canadian public has been assured MAID is being provided for. On this question, there is no legitimate debate.</p>
<h2>The underpinning of MAID</h2>
<p>The fundamental underpinning of all MAID requests is supposed to be the presence of “<a href="https://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/royal-assent">a grievous and irremediable medical condition</a>.” The blunt and indisputable reality is that, unlike for much more predictable medical conditions with better understood biologies, it remains currently impossible to predict whether mental illness is irremediable. </p>
<p>The <a href="https://www.camh.ca/-/media/files/pdfs---public-policy-submissions/camh-position-on-mi-maid-oct2017-pdf.pdf">Centre for Addiction and Mental Health has concluded</a>: “There is simply not enough evidence available in the mental health field … to ascertain whether a particular individual has an irremediable mental illness.” </p>
<p>After 15 months of studying global evidence, the <a href="https://cca-reports.ca/wp-content/uploads/2018/12/The-State-of-Knowledge-on-Medical-Assistance-in-Dying-Where-a-Mental-Disorder-is-the-Sole-Underlying-Medical-Condition.pdf">Council of Canadian Academies</a> came to the same conclusion, as did the <a href="https://www.eagmaid.org/">Expert Advisory Group on MAID</a>. Both the <a href="https://www.washingtonpost.com/blogs/post-partisan/wp/2016/12/15/at-last-american-psychiatrists-speak-out-on-euthanasia/">American Psychiatric Association</a> (APA) and <a href="https://www.ranzcp.org/news-policy/news-archive/news-archive-2016/mental-illness-is-no-basis-for-euthanasia">Royal Australian and New Zealand College of Psychiatrists</a> (RANZCP) have also concluded that there’s no evidence to support providing MAID solely for mental illness.</p>
<figure class="align-center ">
<img alt="Silhouette of a person in fetal position, fragmenting into the wind." src="https://images.theconversation.com/files/386571/original/file-20210225-21-1ibxylh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/386571/original/file-20210225-21-1ibxylh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=386&fit=crop&dpr=1 600w, https://images.theconversation.com/files/386571/original/file-20210225-21-1ibxylh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=386&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/386571/original/file-20210225-21-1ibxylh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=386&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/386571/original/file-20210225-21-1ibxylh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=485&fit=crop&dpr=1 754w, https://images.theconversation.com/files/386571/original/file-20210225-21-1ibxylh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=485&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/386571/original/file-20210225-21-1ibxylh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=485&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">In 18 to 24 months, MAID will be provided to those suffering solely from a mental illness.</span>
<span class="attribution"><span class="source">(Canva/Pixabay)</span></span>
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</figure>
<p>Those who advocate expanding access to MAID propose <a href="https://sencanada.ca/en/Content/Sen/Committee/432/LCJC/55130-e">mitigating this reality with “safeguards</a>.” This ignores the fact that irremediability is itself the primary safeguard built into the MAID framework, and bypassing it renders all other supposed “safeguards” meaningless. </p>
<p>Because we cannot predict irremediability, there is 100 per cent certainty that MAID will be provided to some people who could recover — there is no safeguard against that. Suggesting otherwise is akin to a society that declines to use the death penalty over concerns of potentially executing the innocent, but then implements the death penalty anyway with false “safeguards” to reassure the public even as the wrongly convicted are executed.</p>
<p>Regrettably, while the APA and RANZCP have provided meaningful evidence-based guidance in their societies’ debates on MAID and mental illness, Canadian psychiatric associations have not. After <a href="https://www.canadianhealthcarenetwork.ca/healthcaremanagers/discussions/wish-i-didnt-have-to-write-this-40221">failing to consult members for two years</a>, the <a href="https://www.cpa-apc.org/wp-content/uploads/2020-CPA-Position-Statement-MAID-EN-web-Final.pdf">Canadian Psychiatric Association released its position statement</a> in 2020 that “patients with a psychiatric illness … should have available the same options regarding MAID as available to all patients.” Remarkably, the association also said that its statement was “never intended to … examine <a href="https://www.webcampaign.org/background">whether psychiatric conditions are irremediable</a> and if so, how this should be assessed.” </p>
<figure class="align-center ">
<img alt="Silhouettes of two heads facing different directions" src="https://images.theconversation.com/files/386282/original/file-20210224-21-krg0a2.jpg?ixlib=rb-1.1.0&rect=0%2C33%2C5750%2C3955&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/386282/original/file-20210224-21-krg0a2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=216&fit=crop&dpr=1 600w, https://images.theconversation.com/files/386282/original/file-20210224-21-krg0a2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=216&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/386282/original/file-20210224-21-krg0a2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=216&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/386282/original/file-20210224-21-krg0a2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=272&fit=crop&dpr=1 754w, https://images.theconversation.com/files/386282/original/file-20210224-21-krg0a2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=272&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/386282/original/file-20210224-21-krg0a2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=272&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Without being able to predict whether psychiatric conditions are irremediable, there is 100 per cent certainty that MAID will be provided to someone who could have gotten better.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Equally remarkably, the president of the Québec Psychiatric Association (AMPQ) responded to concerns about the lack of supporting evidence by saying in recent Senate hearings: “<a href="https://sencanada.ca/en/Content/Sen/Committee/432/LCJC/55130-e">This is not a data-driven question, this is an ethical question</a>.”
That sentiment is reflected in an <a href="https://ampq.org/wp-content/uploads/2020/12/mpqdocreflexionammenfinal.pdf">AMPQ document</a> offering guidance on developing a MAID framework for mental illness. </p>
<p>Medical bodies should provide evidence-based guidance within the wheelhouse of their expertise, not sidestep evidence to present other opinions based on other values.</p>
<p>Other evidence <a href="https://www.theatlantic.com/ideas/archive/2019/06/noa-pothoven-and-dutch-euthanasia-system/591262/">highlights the risks</a> of providing access to easy death to suicidal, vulnerable and marginalized people who <a href="http://doi.org/10.1001/jamapsychiatry.2015.2887">are not dying but suffering from psychosocial life stress</a>. Even the <a href="https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=26687&LangID=E">Office of the United Nations High Commissioner for Human Rights</a> has raised the alarm that Canada’s pending MAID policy <a href="https://www.ctvnews.ca/health/un-experts-alarmed-by-trend-toward-assisted-dying-for-non-terminal-conditions-1.5283804">will prematurely end vulnerable lives</a>. </p>
<p>These concerns simply serve as icing on the cake to the indisputable, evidence-based reality that there is no predictably irremediable mental illness for which MAID can be provided. And the government’s 24-month sunset clause is as meaningful as a decree telling coronavirus to disappear — non-existent evidence cannot simply be commanded to appear.</p>
<h2>Mental illness is all too common</h2>
<p>We are poised to provide death for mental illness to potentially suicidal, non-dying marginalized people suffering from life distress who have the potential to recover — all based on <a href="https://www.canada.ca/en/health-canada/services/drugs-health-products/drug-products/fact-sheets/drugs-reviewed-canada.html">less evidence than is required for the approval of any sleeping pill</a>. Given the <a href="https://www.camh.ca/en/driving-change/the-crisis-is-real/mental-health-statistics">ubiquity of mental illness</a>, no family needs to look very far to appreciate the implications. </p>
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<img alt="Margaret Trudeau at a microphone in front of a mental illness banner" src="https://images.theconversation.com/files/386618/original/file-20210226-23-1t9t9ao.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/386618/original/file-20210226-23-1t9t9ao.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=832&fit=crop&dpr=1 600w, https://images.theconversation.com/files/386618/original/file-20210226-23-1t9t9ao.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=832&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/386618/original/file-20210226-23-1t9t9ao.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=832&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/386618/original/file-20210226-23-1t9t9ao.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1046&fit=crop&dpr=1 754w, https://images.theconversation.com/files/386618/original/file-20210226-23-1t9t9ao.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1046&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/386618/original/file-20210226-23-1t9t9ao.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1046&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Margaret Trudeau talks to reporters about her experiences with mental illness during a press conference in Vancouver on Feb. 12, 2007.</span>
<span class="attribution"><span class="source">(CP PHOTO/Richard Lam)</span></span>
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</figure>
<p>Years ago, I had the pleasure of meeting our prime minister’s mother, <a href="https://margarets.ca/margaret-trudeau-advocacy-award/">Margaret Trudeau</a>, to present her a mental health advocate award from the Ontario Psychiatric Association. I recall her vibrancy as she spoke of her life experiences and graciously mingled with my colleagues and me after dinner. I also recall the poignancy of her descriptions of despair during her periods of deep depression, including hopeless times she wished to die.</p>
<p>While of course no one can know what choices they would have made differently in the past, it is undeniable that, if MAID for mental illness is allowed in pending legislation, somebody’s mother or father will be provided MAID while they remain competent during a period of despair. They will not have the chance Margaret Trudeau fortunately had to improve and continue living a more fulfilling life with her family.</p>
<p>If Canada wants to provide MAID to people who are suffering but whose illness might get better, we should have an honest debate and our MAID framework should reflect that. But if MAID is meant for irremediable conditions, evidence shows it would be a dishonest and hypocritical deception to offer it for mental illness.</p>
<p>Unfortunately, in Canada’s debate about medical assistance in dying, evidence has already been provided a medically assisted death.</p><img src="https://counter.theconversation.com/content/156012/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Karandeep Sonu Gaind acted as an expert witness and consultant for the crown in the Truchon and Lamb cases, sat on the Council of Canadian Academies Expert Panel on MAiD and Mental Illness, is physician chair of the Humber River Hospital MAiD Team, is a past president of the Canadian Psychiatric Association (CPA) and chaired the time-limited CPA Task Force on MAiD</span></em></p>The fundamental underpinning of all MAID requests is supposed to be the presence of an incurable medical condition, but it’s not possible to predict that a mental illness will not improve.Karandeep Sonu Gaind, Associate Professor of Psychiatry, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1448682020-09-24T19:59:49Z2020-09-24T19:59:49ZGreyhound pups must be tracked from birth to death, so we know how many are killed<figure><img src="https://images.theconversation.com/files/359722/original/file-20200924-16-14jdxqr.jpg?ixlib=rb-1.1.0&rect=27%2C0%2C6152%2C4131&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>It’s been more than four years since New South Wales greyhound racing was rocked by a <a href="https://apo.org.au/sites/default/files/resource-files/2016-07/apo-nid65365_5.pdf">special inquiry</a> that found overwhelming evidence of systemic animal cruelty, including mass killings. Overbreeding and euthanasia of healthy dogs is still one of the industry’s biggest challenges.</p>
<p>A key issue to emerge from the 2016 inquiry was the euthanasia of healthy greyhounds. <a href="https://apo.org.au/sites/default/files/resource-files/2016-07/apo-nid65365_5.pdf">It found</a> evidence that, over 12 years, between 48,891 and 68,448 dogs were killed because they were considered “too slow to pay their way or were unsuitable for racing”.</p>
<p>The NSW <a href="https://www.legislation.nsw.gov.au/#/view/act/2017/13">Greyhound Racing Act</a> was established in 2017 in response to the inquiry. The act is now under <a href="https://www.nsw.gov.au/customer-service/greyhound-racing-act-review">review</a>. One question being examined is whether the industry needs an “unnecessary euthanasia” target. </p>
<p>I believe such a target is necessary. But it would require tracking greyhounds over their entire lives, to ensure none slip through the cracks. Such a scheme will come with a financial cost, but is the only way to assure the public the greyhound racing industry has truly reformed. </p>
<figure class="align-center ">
<img alt="Greyhounds racing" src="https://images.theconversation.com/files/359244/original/file-20200922-20-zalsj7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/359244/original/file-20200922-20-zalsj7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/359244/original/file-20200922-20-zalsj7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/359244/original/file-20200922-20-zalsj7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/359244/original/file-20200922-20-zalsj7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/359244/original/file-20200922-20-zalsj7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/359244/original/file-20200922-20-zalsj7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Greyhounds born to the racing industry should be tracked.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>Better accountability</h2>
<p>Ten years ago, I <a href="https://www.animallaw.info/sites/default/files/australia_journal_vol6.pdf">argued</a> for better accountability for all dogs bred for the greyhound racing industry – including tracking dogs over their lifespan.</p>
<p>In 2017, a panel considering industry reform <a href="https://www.industry.nsw.gov.au/__data/assets/pdf_file/0020/101738/final-panel-report-february-2017.pdf">recommended</a> such an initiative. It also called for a target date for achieving zero unnecessary euthanasia, saying this should be considered in two years, informed by more robust data. The NSW government <a href="http://www.industry.nsw.gov.au/__data/assets/pdf_file/0015/102165/Greyhound-racing-reforms-Government-response-recommendations.pdf">accepted</a> the recommendation.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-other-industries-can-learn-from-the-failures-of-greyhound-racing-62217">What other industries can learn from the failures of greyhound racing</a>
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</em>
</p>
<hr>
<p>I believe zero unnecessary euthanasia, in the context of this industry, ought to mean all pups born for the industry are rehomed, die of natural causes, or are euthanased following an injury – where that injury occurred on a race track where greyhound welfare is paramount in the design.</p>
<p>Research by the University of Technology, Sydney, has demonstrated severe injuries are lower <a href="https://www.grnsw.com.au/uploads/GRNSW%20Phase%20I%20Report%20FINAL%2020170605.pdf">where the number of dogs is limited to six starters</a> and <a href="https://www.theguardian.com/australia-news/2017/jul/15/greyhound-racing-report-recommends-straight-tracks-to-cut-down-on-injuries">when the racing track is straight</a>. These measures would reduce rates of dogs killed due to race injuries, and more dogs would eventually become available for rehoming. </p>
<h2>Counting every puppy</h2>
<p>Greyhounds are registered when they start racing - usually at around <a href="https://www.grnsw.com.au/uploads/GRNSW%20Attendant%20Handbook%2018%20Jan%202016(1).pdf">16 months of age</a>.</p>
<p>For more accurate data, all pups ought to be given an identification number at birth. This number would stay with them throughout their racing career and into retirement. </p>
<p>The Greyhound Welfare and Integrity Commission (GWIC) is an independent industry regulator established in 2017. According to GWIC <a href="https://www.gwic.nsw.gov.au/__data/assets/pdf_file/0007/283381/Annual-Report_FNL.pdf">figures</a> for the year to June 2019, there were: </p>
<ul>
<li>3,747 greyhound puppy births</li>
<li>1,435 greyhounds retirements</li>
<li>832 greyhound deaths.</li>
</ul>
<p>The difference in the number of greyhounds leaving the industry and those entering (as puppies) was 1,480 greyhounds. This suggests those who were not retired, or did not die, remain unaccounted for. </p>
<p>In a statement to The Conversation, the GWIC said it could not be assumed the 1,480 pups were surplus to the industry that year. The commission said it recently tracked a group of pups born between July and September 2018 and found the majority were either still with their original owner or breeder, or in the custody of a trainer. It said 13% had been sold for racing – either in NSW or to other states.</p>
<p>But without lifelong tracking, we cannot know for sure the fate of these pups, and whether any have been unnecessarily killed. </p>
<figure class="align-center ">
<img alt="A greyhound puppy" src="https://images.theconversation.com/files/359245/original/file-20200922-24-1fgtylo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/359245/original/file-20200922-24-1fgtylo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/359245/original/file-20200922-24-1fgtylo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/359245/original/file-20200922-24-1fgtylo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/359245/original/file-20200922-24-1fgtylo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/359245/original/file-20200922-24-1fgtylo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/359245/original/file-20200922-24-1fgtylo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The fate of many greyhound racing pups is unknown.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>What happens after retirement?</h2>
<p>A dog may be retired because it is not suitable for racing, is injured, or reaches the end of its racing life. Currently in NSW, greyhounds are retired via the <a href="https://www.gapnsw.com.au/">Greyhound Adoption Program</a> or alternative greyhound <a href="https://greyhoundrescue.com.au/">rehoming organisations</a>. </p>
<p>In the year to June 2019, NSW’s Greyhound Adoption Program reported rehoming 729 greyhounds. While this is encouraging, it’s not clear how many greyhounds entered the program. The Conversation has sought comment from Greyhound Racing NSW, which runs the program, on the total number of dogs in the program. </p>
<p>In addition to rehoming programs, industry participants can also rehome dogs to people outside the greyhound industry. The animals must then be registered as <a href="https://www.gwic.nsw.gov.au/__data/assets/pdf_file/0009/297144/Greyhound-Rehoming-Policy-April-2020.pdf">companion animals</a>. The GWIC must be empowered to undertake follow up inspections to ensure these dogs are safe.</p>
<figure class="align-center ">
<img alt="A greyhound with its owner" src="https://images.theconversation.com/files/359247/original/file-20200922-14-1oq16ap.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/359247/original/file-20200922-14-1oq16ap.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/359247/original/file-20200922-14-1oq16ap.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/359247/original/file-20200922-14-1oq16ap.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/359247/original/file-20200922-14-1oq16ap.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/359247/original/file-20200922-14-1oq16ap.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/359247/original/file-20200922-14-1oq16ap.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">In some cases, racing greyhounds can be rehomed.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>Winning back the public</h2>
<p>For greyhound lifecycle data to be accurate, the animals must be tracked via a birth identification number, which stays with them for life.</p>
<p>GWIC reports indicate it is working on these tracking issues. A lifespan tracking approach will cost money. The NSW government must ensure the regulator is adequately funded to implement and enforce such a scheme.</p>
<p>After the special inquiry, the greyhound racing industry <a href="https://www.nsw.gov.au/sites/default/files/2020-07/Greyhound-Racing-Act-2017-Review-Discussion-Paper_1.pdf">said</a> it was “willing to change” to meet strict animal welfare standards and regulatory guidelines. According to GWIC figures, the industry has made progress on <a href="https://www.gwic.nsw.gov.au/about/reports-and-statistics/whelping-and-breeding-statistics">lowering breeding rates</a>, which obviously helps. </p>
<p>Ultimately, the greyhound industry’s future hangs on the question of unnecessary euthanasia – and targets for this must be based on accurate data. Only then will the industry convince the public that it’s committed to being cruelty-free. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/new-south-wales-overturns-greyhound-ban-a-win-for-the-industry-but-a-massive-loss-for-the-dogs-66822">New South Wales overturns greyhound ban: a win for the industry, but a massive loss for the dogs</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/144868/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alexandra McEwan sits on the Animal Welfare and Ethics Committee for the Lost Dogs' Home, Melbourne, Victoria. </span></em></p>We must make ensure that puppies born into the greyhound racing don’t slip through the cracks.Alexandra McEwan, Lecturer: Law, CQUniversity AustraliaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1417762020-07-09T20:01:16Z2020-07-09T20:01:16ZAssisted dying referendum: why NZ’s law lacks necessary detail to make a fully informed decision<figure><img src="https://images.theconversation.com/files/346483/original/file-20200709-87080-bn9qtf.jpg?ixlib=rb-1.1.0&rect=51%2C155%2C5699%2C3673&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Photographee.eu/Shutterstock</span></span></figcaption></figure><p>When New Zealanders go to the polls in September, they will also be asked to vote in a <a href="https://www.referendums.govt.nz/endoflifechoice/index.html?gclid=EAIaIQobChMI56yrgMu86gIVWgwrCh18CAOHEAAYASAAEgKSe_D_BwE">referendum on assisted dying</a>.</p>
<p>Parliament already passed the <a href="http://www.legislation.govt.nz/act/public/2019/0067/latest/DLM7285905.html">End of Life Choice Act</a> in 2019, but the referendum will decide whether it comes into force.</p>
<p>We will be asked if we accept or decline the right of people to seek an assisted death, without the need for consultation with family and with no stand-down period other than a requirement of 48 hours to prepare the medication. The act would allow people to choose when they die and by what means, whether the medication is self-administered or given by suitably qualified clinicians. </p>
<p>This appears an ideal scenario, affirming the right to choose, but it is a deeply profound decision for the public to make. Many may be unaware of issues beyond the goal of ending suffering for people with life-limiting conditions. </p>
<p>My <a href="https://www.nzma.org.nz/journal-articles/social-consequences-of-assisted-dying-a-case-study">research</a> shows an assisted death can have repercussions for many people — those left behind or others struggling with a chronic disease. Experiences from countries where assisted dying has been legal for some time have highlighted these challenges. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/one-year-of-voluntary-assisted-dying-in-victoria-400-have-registered-despite-obstacles-141054">One year of voluntary assisted dying in Victoria: 400 have registered, despite obstacles</a>
</strong>
</em>
</p>
<hr>
<h2>Social consequences of assisted dying</h2>
<p>In the Netherlands, assisted dying has been legal for 18 years. Over time, there have been notable slips in the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3364764/">criteria that have to be met</a>. This includes the level of physical suffering, which is a subjective experience, and the requirement that people must be competent to agree to an assisted death at the point of administration. This may not be possible for people with dementia who have previously given written consent but can no longer consent at the point of death. </p>
<p>While the law hasn’t changed, its interpretation has, and people with mental illness can now also request an assisted death. Data from the Netherlands show one in 30 people now die by euthanasia, compared to one in 90 when the law was introduced in 2002. </p>
<p>In the US, some medical insurance companies pay for an assisted death but <a href="https://www.washingtontimes.com/news/2017/jun/7/assisted-suicide-laws-can-be-abused/">not for palliative care</a>. This removes any <a href="https://silo.tips/download/the-dangers-of-assisted-suicide-no-longer-theoretical">notion of choice and autonomy</a> from the person. </p>
<p>In Canada, where assisted dying has been legal for four years, the number of people seeking medical help to die has risen significantly, with figures more than doubling year on year. This has exposed unexpected consequences, such as fear of judgement for leaving <a href="https://www.sciencedirect.com/science/article/abs/pii/S0885392417312459">family members unsupported</a> after an assisted death and <a href="https://pubmed.ncbi.nlm.nih.gov/31751211/">stigmatisation of clinicians</a>, whether or not they support people choosing the time of their death.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/in-places-where-its-legal-how-many-people-are-ending-their-lives-using-euthanasia-73755">In places where it's legal, how many people are ending their lives using euthanasia?</a>
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</em>
</p>
<hr>
<h2>Impact on those left behind</h2>
<p>To consider assisted dying legislation as an issue of individual autonomy denies that we are part of a much larger group with complex connections. This is particularly important when we consider Māori and Pasifika populations, whose voices are notably absent from the <a href="http://www.legislation.govt.nz/act/public/2019/0067/latest/DLM7285905.html">current act</a> in New Zealand. </p>
<p>The act proposes people may seek assisted dying without any consultation with whānau (family), but the impact of an assisted death reaches far beyond relieving suffering for the individual. The ripple effects can fracture families and communities. As the act currently stands, it has the potential to cause greater harm than good.</p>
<p>We can already see this oversees, for example in Canada and Switzerland, where those who use assisted dying and their immediate family <a href="https://www.sciencedirect.com/science/article/abs/pii/S0885392417312459">guard this information closely</a>. This is likely happening because of <a href="https://www.sciencedirect.com/science/article/abs/pii/S0885392417312459">stigma attached to dying in this way</a>, even when it is legal. </p>
<p>The New Zealand legislation carries this risk. It includes restrictions on disclosure of the use of the law and on individuals being recorded as having died an assisted death, often for insurance purposes. </p>
<h2>The contagion effect</h2>
<p>There is another significant issue to consider. One person’s assisted death could influence the decisions of others — and this contagion effect could play out in two ways. </p>
<p>Those who are not aware of the legislation but discover a friend or family member is accessing it may consider using it themselves. More concerning is people with chronic conditions may feel obliged to seek assisted dying, should they feel burdensome to their family. </p>
<p>There is a notable difference in the New Zealand population in how support for elders or unwell family members is provided. Māori and Pasifika people tend to care for their sick and elders while pākehā (New Zealanders of European descent) often rely on external support. Our <a href="https://www.nzma.org.nz/journal-articles/social-consequences-of-assisted-dying-a-case-study">research</a> shows when one family member has an assisted death, others with a chronic illness can feel an expectation for them to consider it. </p>
<p>Such broader consequences of introducing assisted dying legislation are often hidden, but they must be addressed as New Zealand moves towards the referendum. The current binary positioning of the debate focuses on autonomy of the individual versus protecting the public, whereas the reality is that assisted dying is more than merely either of these opposing values. It has already been demonstrated that the effects of assisted dying legislation reach beyond the individual and, as such, must be considered as we enter this referendum. The act lacks the necessary detail to make a fully informed decision. </p>
<p>The idea that choice is being given to a popular vote is, in itself, problematic. It is suggestive of a government unwilling to take responsibility for the fallout, should the referendum produce a supportive vote. </p>
<p>We need to safeguard our families and communities from these social consequences of assisted dying legislation. Vulnerable populations have to remain safe from persuasion to die and there has to be a supportive framework for those left behind after an assisted death, so they can grieve without feeling stigmatised.</p><img src="https://counter.theconversation.com/content/141776/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rhona Winnington does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Assisted dying is often cast as an issue of individual autonomy, but an assisted death can have repercussions on many people — those left behind or others struggling with a chronic disease.Rhona Winnington, Lecturer, Auckland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1410542020-06-30T06:47:17Z2020-06-30T06:47:17ZOne year of voluntary assisted dying in Victoria: 400 have registered, despite obstacles<figure><img src="https://images.theconversation.com/files/344414/original/file-20200629-104522-jfcwc2.jpg?ixlib=rb-1.1.0&rect=44%2C22%2C4899%2C3219&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>One year ago, the Victorian Voluntary Assisted Dying Act came into effect after a prolonged, intense and divisive public debate.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1274134658972704768"}"></div></p>
<p>For some, it marked a major step forward for individual freedom in Victoria — an acknowledgement of the right of individuals to choose how they wished to live and die. For others, it signified a betrayal of some of the most fundamental moral precepts of our society and a reversal of the basic commitments of the medical profession.</p>
<p>A year later, what can we say about the impact of the legislation on Victorian life? We have been considering this question as part of our federally funded research project examining the impact and consequences of the Victorian Voluntary Assisted Dying legislation.</p>
<p>While it’s too soon to make a definitive judgement and it’s certainly not the case that the deep social wounds have healed, the Act appears to be functioning reasonably well, though some logistical and bureaucratic issues remain.</p>
<p>Meanwhile the coronavirus pandemic has complicated the picture as many patients seek advice on dying amid anxiety about contracting the disease.</p>
<h2>How is it working?</h2>
<p>The Act appears to be functioning tolerably well in that a series of “workable” arrangements have been put in place across a number of hospital and community settings. It’s not yet known how many Victorians have used the laws to end their lives. The number of people making inquiries (the first step along the way to assisted dying) was about 400 in this first year — <a href="https://www.smh.com.au/national/victoria-s-first-year-of-euthanasia-sees-lives-end-in-peace-and-devastation-20200618-p553yu.html">double what had been anticipated</a>.</p>
<p>But the Act has not opened the floodgates, unlike in <a href="https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html">Canada</a>, where the number of people undertaking voluntary assisted dying were <a href="https://www.cbc.ca/news/politics/maid-assisted-death-increase-1.4715944">many times the anticipated number</a>.</p>
<p>The system of “care navigators” to assist patients and their families to negotiate the <a href="https://www.dwdv.org.au/resources/voluntary-assisted-dying-in-victoria/voluntary-assisted-dying-care-navigation-service#:%7E:text=The%20Role%20of%20Voluntary%20Assisted,to%20contacts%20made%20with%20them">complex bureaucratic processes</a> has been working well. They have served as an important point of contact for patients, their family members and carers.</p>
<p>Given the difficulties of finding doctors who have signed up to do the assisted dying training, the navigators have established a network of participating health professionals and provided education across various health settings.</p>
<p>They have also supported clinicians through the difficulties of training and the existential realities of a changing role for medical professionals.</p>
<h2>The process takes time</h2>
<p>Inbuilt safeguards mean progressing through the procedural steps takes time. It isn’t possible to say if these are functioning effectively, or if they are too stringent or too lax. More data are needed from the participants in the scheme on their experiences of the procedure.</p>
<p>There has been criticism of the bureaucratic requirements, which include a large amount of paperwork and multiple forms, taking weeks or <a href="https://www.smh.com.au/national/heart-achingly-painful-allan-waited-for-100-days-before-being-granted-permit-to-die-20200619-p554az.html">even months to complete</a>. Yet, some of these issues are inherent in the need for caution and there may be no way around them.</p>
<p>Ultimately, as the Parliament recognised from the beginning, a balance has to be struck between the right to access and the valid concerns of those who are more cautious. </p>
<h2>Obstacles remain</h2>
<p>Some logistical issues have arisen. There have been delays because of shortages of specialist doctors who have expressed willingness to participate and have completed the required training — especially in key specialties in some rural areas.</p>
<p>The responses of individual institutions have been variable. This was to be expected, because many health services were very clear about their opposition to voluntary assisted dying. Such services have sought to develop responses including involving broader health-care networks (such as those offered by care navigators) as patients have sought to exercise their rights under the law.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/344453/original/file-20200629-155303-1leopog.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/344453/original/file-20200629-155303-1leopog.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/344453/original/file-20200629-155303-1leopog.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/344453/original/file-20200629-155303-1leopog.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/344453/original/file-20200629-155303-1leopog.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/344453/original/file-20200629-155303-1leopog.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/344453/original/file-20200629-155303-1leopog.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Some people have waited months for approval to access voluntary assisted dying laws.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>One issue yet to be resolved involves a law which prohibits using an electronic carriage service to “directly or indirectly counsel or incite” someone to end their life. Some legal experts have interpreted it to mean practitioners <a href="https://www1.racgp.org.au/newsgp/racgp/voluntary-assisted-dying-and-the-role-of-the-gp">can’t use telehealth for assisted dying counselling</a>. But we dispute whether this legislation can be applied to Victoria in our paper soon to be published in the <a href="http://sites.thomsonreuters.com.au/journals/category/journal-of-law-and-medicine/">Journal of Law and Medicine</a>.</p>
<p>Another issue relates to a section of the laws which mean practitioners are only allowed to discuss assisted dying if the patient explicitly raises it. This safeguard exists to ensure coercion of patients doesn’t occur — including by health workers. But some have suggested it works as a barrier to full and open communication including sensitive exploration of an expressed wish to die. This clause has been omitted from the Western Australian legislation which was approved in December last year.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/was-take-on-assisted-dying-has-many-similarities-with-the-victorian-law-and-some-important-differences-121554">WA's take on assisted dying has many similarities with the Victorian law – and some important differences</a>
</strong>
</em>
</p>
<hr>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/344452/original/file-20200629-155312-4tcg8f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/344452/original/file-20200629-155312-4tcg8f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/344452/original/file-20200629-155312-4tcg8f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/344452/original/file-20200629-155312-4tcg8f.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/344452/original/file-20200629-155312-4tcg8f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/344452/original/file-20200629-155312-4tcg8f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/344452/original/file-20200629-155312-4tcg8f.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Western Australia will be the second Australian state to introduce voluntary assisted dying laws. An assisted dying bill was introduced into WA Parliament in August, 2019, and passed in December. It’s expected to come into effect mid-2021.</span>
</figcaption>
</figure>
<h2>Coronavirus complications</h2>
<p>The COVID-19 pandemic has complicated the picture as a number of patients have sought advice on dying amid anxiety about contracting the disease.</p>
<p>Anecdotal evidence suggests additional fear from the pandemic has <a href="https://www.smh.com.au/national/requests-to-die-surge-as-virus-fears-push-terminally-ill-to-make-plans-20200528-p54xbc.html">increased demand for assisted dying services</a>. But simultaneously, many are avoiding hospitals where many of the assisted dying assessments are occurring because of the fear of contracting COVID-19. The impact of the coronavirus means it is difficult to compare Victoria’s experience of assisted dying with other parts of the world (some of which implemented assisted dying long before the pandemic). </p>
<p>Overall, while not problem free, there have been no major obstacles to the functioning of the Act itself.</p>
<p>But none of this, of course, resolves the underlying ethical differences that have characterised the debates about assisted dying and euthanasia in Australia for decades. However, the uneasy compromise in Victoria has at least allowed the debate to move on and possibly has enhanced mutual respect for the two opposing sides.</p>
<p>It remains to be seen whether there will be a deep, fundamental shift in attitudes to death and dying, concepts of death, the care of elderly and vulnerable people, and the goals and purposes of medicine.</p>
<p>Our greatest protection against an undermining of key values, however, will lie in continuing open and articulate debates about these subjects, based on rigorously collected data. It is critical these debates continue. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/from-right-to-die-to-right-to-choose-the-way-you-die-the-shifting-euthanasia-debate-50449">From 'right to die' to 'right to choose the way you die' – the shifting euthanasia debate</a>
</strong>
</em>
</p>
<hr>
<p><em>This article is supported by the <a href="https://theconversation.com/au/partners/judith-neilson-institute">Judith Neilson Institute for Journalism and Ideas</a>.</em></p><img src="https://counter.theconversation.com/content/141054/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Komesaroff receives funding from the NHMRC of Australia for a project examining the impact and consequences of the Victorian Voluntary Assisted Dying legislation. </span></em></p><p class="fine-print"><em><span>Cameron Stewart receives funding from the National Health and Medical Research Council of Australia for a project examining the impact consequences of the Victorian Voluntary Assisted Dying legislation</span></em></p><p class="fine-print"><em><span>Camille La Brooy receives funding from the NHMRC of Australia for a project examining the impact and consequences of the Victorian Voluntary Assisted Dying legislation. </span></em></p><p class="fine-print"><em><span>Jennifer Philip receives funding from the Medical Research Future Fund for a project examining palliative care integration for people with cancer. She is also co-investigator on a project funded by the NHMRC examining the impact and consequences of the Victorian Voluntary Assisted Dying Legislation. </span></em></p>Over the first year of voluntary assisted dying in Victoria, about 400 people applied to access the laws to end their lives. There are lingering issues, but the system is workable.Paul Komesaroff, Professor of Medicine, Monash UniversityCameron Stewart, Professor at Sydney Law School, University of SydneyCamille La Brooy, Research Fellow/Senior Study Coordinator, Monash UniversityJennifer Philip, Professor, VCCC Chair of Palliative Medicine, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1320962020-02-20T19:02:46Z2020-02-20T19:02:46ZWithout more detail, it’s premature to say voluntary assisted dying laws in Victoria are ‘working well’<figure><img src="https://images.theconversation.com/files/316301/original/file-20200220-10985-1lz606e.jpg?ixlib=rb-1.1.0&rect=25%2C0%2C5725%2C3837&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/caring-wife-comforting-her-elderly-husband-1014846715">Shutterstock</a></span></figcaption></figure><p>The <a href="https://www.bettersafercare.vic.gov.au/about-us/about-scv/councils/vad-review-board">Voluntary Assisted Dying Review Board</a> has this week published a <a href="https://www.bettersafercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-report-of-operations-june-to-december-2019">report</a> detailing the first six months of the legislation in action in Victoria.</p>
<p>The report reveals 52 people legally ended their lives from the time voluntary assisted dying became legal on June 19 last year to the end of December. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1229925239166865408"}"></div></p>
<p>While the Victorian government is hailing the report as an indicator the law is operating successfully, some questions remain. </p>
<p>Notably, the report only documents people who have accessed the legislation. It doesn’t tell us about those who may have wanted to be assessed for voluntary assisted dying, but not been able to.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-victoria-and-this-is-what-you-need-to-know-111836">Voluntary assisted dying will soon be legal in Victoria, and this is what you need to know</a>
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</em>
</p>
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<h2>What the report tells us</h2>
<p>The Voluntary Assisted Dying Review Board will report on the operation of voluntary assisted dying in Victoria every six months for the first two years, and then annually.</p>
<p>The review board’s <a href="https://www.bettersafercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-review-board-report-of-operations-2018-19">first report</a> was tabled in parliament on August 27 2019. As this initial report only covered the law in effect from June 19 to June 30, this <a href="https://www.bettersafercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-report-of-operations-june-to-december-2019">second report</a>, tabled in parliament on Wednesday, is the first to provide any real detail about voluntary assisted dying in practice.</p>
<p>The report gives us a snapshot of the number of patients progressing through various stages of the assessment and approval process. In brief:</p>
<ul>
<li><p>136 patients had completed a “first assessment”</p></li>
<li><p>102 patients had completed a “consulting assessment” (this is a second assessment to confirm a person’s eligibility, performed by a different doctor)</p></li>
<li><p>81 voluntary assisted dying permits had been approved</p></li>
<li><p>52 deaths had been confirmed. Some 43 people self-administered the lethal substance, while nine required a practitioner to administer it for them.</p></li>
</ul>
<p>The review board <a href="https://www.bettersafercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-report-of-operations-june-to-december-2019">concludes</a> these figures demonstrate “the Act has struck a balance between being strict with compliance, while still accessible to those who want this choice”.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/was-take-on-assisted-dying-has-many-similarities-with-the-victorian-law-and-some-important-differences-121554">WA's take on assisted dying has many similarities with the Victorian law – and some important differences</a>
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<p>The Victorian government estimated <a href="https://www.abc.net.au/news/2019-06-16/voluntary-assisted-dying-starts-in-victoria/11207712">about a dozen patients</a> would access voluntary assisted dying in the first year, so the number of reported deaths already well exceeds this.</p>
<p>The Chair of the review board, Justice Betty King QC, <a href="https://www.abc.net.au/news/2020-02-19/assisted-dying-laws-victoria-used-by-more-than-50-people/11979962">said</a> the number of patients accessing voluntary assisted dying shows this is something Victorians wanted, and now it’s available, they’re using it.</p>
<p>Victorian Minister for Health Jenny Mikakos said the report indicates the legislation “is working well and as intended”.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/316296/original/file-20200220-11005-vd1e8k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/316296/original/file-20200220-11005-vd1e8k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/316296/original/file-20200220-11005-vd1e8k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/316296/original/file-20200220-11005-vd1e8k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/316296/original/file-20200220-11005-vd1e8k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/316296/original/file-20200220-11005-vd1e8k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/316296/original/file-20200220-11005-vd1e8k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">52 Victorians ended their lives in 2019 using the new voluntary assisted dying laws.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/holding-hand-young-elderly-sitting-wheel-760051333">Shutterstock</a></span>
</figcaption>
</figure>
<h2>What the report doesn’t tell us</h2>
<p>Importantly, the report doesn’t provide any information about patients requesting access to voluntary assisted dying prior to the formal first assessment.</p>
<p>This means we don’t have any data at this stage about patients who may have wanted to access voluntary assisted dying but were not able to, or the reasons why this may have been the case.</p>
<p>For example, we’ve seen anecdotal reports of people <a href="https://www.theage.com.au/national/victoria/terminally-ill-die-locked-out-of-euthanasia-laws-as-doctors-warn-of-specialist-shortage-20200131-p53wi1.html">unable to find a doctor</a> willing or qualified to assess them for voluntary assisted dying. </p>
<p>Patients in regional or rural Victoria <a href="https://www.sbs.com.au/news/more-than-50-people-died-under-victoria-s-euthanasia-scheme-during-its-first-six-months">have also reportedly had difficulties</a> accessing voluntary assisted dying due to a federal law prohibiting doctors from discussing it with patients over the phone or online.</p>
<p>These issues are in addition to the “<a href="https://www.theage.com.au/national/victoria/law-restricting-doctors-from-initiating-euthanasia-talk-is-gag-clause-academics-say-20200116-p53rxe.html">gag clause</a>” feature of the Victorian legislation, which prohibits all health practitioners from initiating a discussion about voluntary assisted dying with their patients.</p>
<p>The <a href="https://www.theage.com.au/national/victoria/euthanasia-52-victorians-take-approved-lethal-dose-in-first-six-months-of-new-laws-20200219-p5427g.html">review board said</a> it has recently started collecting data on terminally ill people who were unable to access the laws. But it’s an oversight that systematic processes to collect this information weren’t in place from the beginning.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/in-places-where-its-legal-how-many-people-are-ending-their-lives-using-euthanasia-73755">In places where it's legal, how many people are ending their lives using euthanasia?</a>
</strong>
</em>
</p>
<hr>
<p>In regards to those assessed for voluntary assisted dying, the report doesn’t explain the differences in reported numbers at each stage of the assessment and approval process. While some of the discrepancies are likely explained by the time it takes people to move through the steps, it’s unclear whether some patients decided not to proceed, or died during the process.</p>
<p>The report also doesn’t detail how long it takes patients to progress from a first assessment through to the permit application stage, though the review board noted the process can take several weeks.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/316309/original/file-20200220-11044-1fe7pvo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/316309/original/file-20200220-11044-1fe7pvo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/316309/original/file-20200220-11044-1fe7pvo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/316309/original/file-20200220-11044-1fe7pvo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/316309/original/file-20200220-11044-1fe7pvo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/316309/original/file-20200220-11044-1fe7pvo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/316309/original/file-20200220-11044-1fe7pvo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A person wanting to end their life under the legislation needs to be deemed eligible by two separate doctors.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/female-doctor-filling-out-questionnaire-senior-782087884">Shuttershock</a></span>
</figcaption>
</figure>
<p>Further, the report doesn’t provide any demographic detail about the patients who have accessed voluntary assisted dying, such as their age, sex, level of education or income. While the review board receives information on demographics, and acknowledges this is important, it didn’t report this data.</p>
<p>The limited information reported by the review board should be interpreted with caution, particularly in terms of understanding community access (and potential inaccess) to voluntary assisted dying in Victoria.</p>
<p>Without further detail, it’s premature to conclude the voluntary assisted dying legislation is “<a href="https://twitter.com/JennyMikakos/status/1229925239166865408?s=20">working well</a>”. </p>
<h2>What’s next?</h2>
<p>Other jurisdictions considering or implementing voluntary assisted dying have an opportunity to learn from the initial period of operation as well as data collection and reporting in Victoria.</p>
<p><a href="https://ww2.health.wa.gov.au/voluntaryassisteddying">Western Australia</a> passed similar voluntary assisted dying legislation in 2019, which will come into effect in 2021. Meanwhile, <a href="https://www.parliament.qld.gov.au/work-of-committees/committees/HCDSDFVPC/inquiries/current-inquiries/AgedCareEOLPC">Queensland</a>, <a href="https://www.parliament.sa.gov.au/en/Committees/Committees-Detail">South Australia</a> and <a href="http://www.parliament.tas.gov.au/lc/gaffney/EOL.pdf">Tasmania</a> are also exploring legalising voluntary assisted dying.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/western-australia-looks-set-to-legalise-voluntary-assisted-dying-heres-whats-likely-to-happen-from-next-week-128386">Western Australia looks set to legalise voluntary assisted dying. Here's what's likely to happen from next week</a>
</strong>
</em>
</p>
<hr>
<p>The report offers a useful snapshot of the initial uptake of voluntary assisted dying in Victoria. But we need more detailed data to better assess the operation of the legislation, including whether or not access is equitable, and “accessible to those who want this choice”, as the review board has suggested.</p><img src="https://counter.theconversation.com/content/132096/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Courtney Hempton's doctoral research was funded by the Australian Government (Research Training Program Scholarship), and she is currently engaged on a project funded by the Australian Research Council. She has previously been affiliated with the Monash Health Voluntary Assisted Dying Working Group and Voluntary Assisted Dying Steering Committee. Courtney is also grateful to Nia Sims, for insightful and ongoing conversations regarding the implementation and oversight of voluntary assisted dying in Victoria and beyond.</span></em></p><p class="fine-print"><em><span>Marc Trabsky does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A new report tells us in the first six months voluntary assisted dying was legal in Victoria, 52 people ended their lives. But the report doesn’t tell us everything we need to know.Courtney Hempton, Associate Research Fellow, Deakin UniversityMarc Trabsky, Senior Lecturer, La Trobe Law School and Director, Centre for Health, Law and Society, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1294242020-02-18T13:55:36Z2020-02-18T13:55:36ZAssisted dying is not the easy way out<figure><img src="https://images.theconversation.com/files/315377/original/file-20200213-11000-c1rktt.jpg?ixlib=rb-1.1.0&rect=13%2C84%2C4311%2C2874&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The stress over their ability to swallow can provoke a great deal of anxiety in patients.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-womans-hands-drinking-glass-water-1142021786">eyepark/Shutterstock.com</a></span></figcaption></figure><p><a href="https://www.nytimes.com/2019/07/08/health/aid-in-dying-states.html">One in every five Americans</a> now lives in a state with legal access to a medically assisted death. In theory, assisted dying laws allow patients with a terminal prognosis to hasten the end of their life, once their suffering has overcome any desire to live. While these laws may make the process of dying less painful for some, they don’t make it easier. Of the countries that have aid-in-dying laws, the U.S. has the <a href="https://www.bbc.com/news/world-34445715">most restrictive</a>. Intended to reduce unnecessary suffering, the laws can sometimes have the opposite effect. </p>
<p>My work as a medical anthropologist explores the field of medicine from a cultural angle, focusing primarily on <a href="https://www.press.uchicago.edu/ucp/books/book/chicago/B/bo25956731.html">birth</a> and <a href="https://undark.org/2017/10/19/death-dying-america-anthropologist/">death</a>. Over the past four years, I’ve studied how access to a medically assisted death is transforming the ways Americans die. I have spent hundreds of hours accompanying patients, families and physicians on their road to an assisted death. And, I have witnessed some of these deaths firsthand. </p>
<p>This research has taught me one thing: An assisted death is not the path of least resistance. For many, it is the path of most resistance. Those who pursue it face a range of barriers, at a time when their health is rapidly declining. Some patients navigate these waters successfully and manage to secure the coveted bottle of life-ending medication. Others give in to the opposition or simply run out of time. </p>
<h2>History of the laws</h2>
<p>The country’s first right-to-die law, Oregon’s Death with Dignity Act (1994), came after a fierce, century-long struggle to give terminally ill patients access to some form of medical assistance in dying.</p>
<p>Legislators in Ohio and Iowa proposed the first two of these bills in 1906. Known as the “<a href="https://daily.jstor.org/history-euthanasia-movement/">chloroform bills</a>,” they envisioned the use of chloroform on fatally ill or injured patients to induce their death, but their terms were so flawed that they never saw the light of day. Other <a href="https://www.finalexit.org/chronology_right-to-die_events.html">legislative bills</a> – introduced in Nebraska in 1937, Florida in 1967 and Idaho in 1969 – met similar fates. </p>
<p>When a committee of lawyers, physicians and activists sat down to craft Oregon’s <a href="https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/statute.pdf">Death with Dignity Act</a> in 1993, similar <a href="https://www.finalexit.org/chronology_right-to-die_events.html">ballot initiatives</a> had recently failed in Washington (1991) and California (1992). To appease vocal opposition, lawmakers laced the Oregon statute with a long list of restrictions and safeguards.</p>
<p>Unlike all previous proposals, the Oregon measure no longer allowed for euthanasia. That’s the act of injecting a patient with a lethal dose of narcotics. Under the law, patients would have to ingest the lethal dose themselves – a final protection meant to ensure the absolutely voluntary nature of their death. The act also introduced a 15-day waiting period between a patient’s first and second request, intended as a period of reflection. </p>
<p>It worked. Oregonians narrowly approved the measure, but a three-year legal stay prevented it from being enacted. In 1997, Oregonians <a href="https://ballotpedia.org/Oregon_Repeal_of_%22Death_with_Dignity%22,_Measure_51_(1997)">reaffirmed their support</a> for the act, and it became law. Since then, <a href="https://www.deathwithdignity.org/take-action/">each state</a> that has added an assisted dying law to their books has either followed the strict Oregon model or, in the case of <a href="https://www.capitol.hawaii.gov/session2018/bills/HB2739_HD1_.pdf">Hawaii</a>, added more constraints. Those include requiring a mandatory mental health exam and a 20-day waiting period in between requests. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/315114/original/file-20200212-61917-cmd00h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/315114/original/file-20200212-61917-cmd00h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=396&fit=crop&dpr=1 600w, https://images.theconversation.com/files/315114/original/file-20200212-61917-cmd00h.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=396&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/315114/original/file-20200212-61917-cmd00h.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=396&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/315114/original/file-20200212-61917-cmd00h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=498&fit=crop&dpr=1 754w, https://images.theconversation.com/files/315114/original/file-20200212-61917-cmd00h.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=498&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/315114/original/file-20200212-61917-cmd00h.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=498&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">MPs in the parliament of Victoria in Australia react after Victoria passed legislation Nov. 22, 2017 to allow assisted dying.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/harriet-shing-mp-and-colleen-hartland-mp-react-as-the-bill-news-photo/877314916?adppopup=true">Getty Images/Scott Barbour</a></span>
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<h2>The letter of the law</h2>
<p>Unlike other countries that permit assisted dying, such as Canada, the Netherlands and Belgium, in the U.S. intolerable suffering and an incurable medical condition alone are not enough to qualify someone for an aided death. A patient must already be within six months of the end of their life – coinciding with the admission criteria for hospice. That means protracted degenerative diseases with open-ended prognoses like amyotrophic lateral sclerosis (ALS) don’t usually qualify, at least not until a patient’s breathing becomes severely compromised. </p>
<p>Every year, <a href="https://www.civilbeat.org/2020/01/report-too-many-people-are-dying-while-waiting-for-medical-aid-in-dying/">dozens of eligible patients</a> who apply for an assisted death are so close to the end of their life that they die during the mandated waiting period. And by the time a patient becomes eligible for an assisted death, they may have missed the window when they are able to ingest the lethal medication. In contrast to their Canadian, Dutch and Belgian colleagues, American physicians cannot administer these drugs to their patients. </p>
<p>Lou Libby, a pulmonologist from Portland, Oregon, told me that the physical manifestations of many advanced neurodegenerative diseases bump up against this requirement. Again, consider ALS. Alongside their diminishing ability to breathe, patients with ALS almost always lose their ability to swallow. </p>
<p>“You have to be able to ingest the medication yourself. And here you have all these patients who can’t even swallow.” </p>
<p>As I learned during my research, the stress over their ability to swallow can provoke a great deal of anxiety in patients, particularly when it comes to correctly timing their death. Taking the medication too early means cutting short a life still worth living; waiting too long means possibly missing their chance. To have the kind of death they prefer, some patients choose to die earlier than they would have liked.</p>
<h2>Cultural roadblocks</h2>
<p>Despite popular backing for medical assistance in dying – <a href="https://news.gallup.com/poll/235145/americans-strong-support-euthanasia-persists.aspx">seven in 10 Americans</a> support it – the cultural stigma and moral ambivalence around these laws remain potent. Across the country, many <a href="https://www.theguardian.com/society/2020/jan/28/catholic-hospitals-lead-fight-against-access-drugs-assisted-dying">religiously owned</a> health systems decline to participate in their state’s assisted dying law. </p>
<p>In <a href="https://www.bendbulletin.com/lifestyle/health/rural-oregonians-still-face-death-with-dignity-barriers/article_e41a5836-8bd6-5680-b37d-07517d3b9335.html">rural parts</a> of Oregon and along the coastal corridor, where Catholic health systems often run the only hospital in town, patients routinely struggle to find two physicians who will approve their request, or a pharmacist who will fill their prescription. <a href="https://endoflifewa.org/wp-content/uploads/2012/11/Courtney-Campbell-Hastings-Center-9-10.pdf">Many hospices</a> refuse to cooperate with a patient’s desire to seek an assisted death, leading patients to feel abandoned. <a href="https://www.nap.edu/read/25131/chapter/7#103">Many assisted living and nursing facilities</a> still prohibit the practice under their roof, forcing patients to make alternative arrangements, sometimes at a nearby motel. In trying to reclaim control over the way they die, these patients often are being stripped of some of that control in the process. </p>
<p>Medical aid-in-dying will become an even bigger issue as baby boomers face the end of their lives. It is mainly older patients who want access to an assisted death. In Oregon, for example, nearly 80% of those who sought medical assistance in dying <a href="https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year21.pdf">in 2018</a> were 65 or older. Boomers, as in many other aspects of their lives, likely <a href="https://business.time.com/2013/08/14/a-good-death-how-boomers-will-change-the-world-a-final-time/">will want more say over their deaths</a>.</p>
<p>Assisted dying reframes how we, as a society, understand the potential of medicine, not as a way to extend life but to mitigate the process of dying. Patients who endure intractable, painful diseases sometimes reach a moment when the prospect of staying alive feels worse than the prospect of dying. At that point, the idea of having a say over the timing and manner of their death can bring <a href="https://www.nytimes.com/interactive/2019/12/05/sports/euthanasia-athlete.html">enormous comfort</a>. But few are aware of all the hurdles they must clear to exercise this kind of control.</p>
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<p class="fine-print"><em><span>Anita Hannig does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Nine states and the District of Columbia currently have laws that permit assisted dying, but the laws are so restrictive that they are often more hurdle than help.Anita Hannig, Associate Professor of Anthropology, Brandeis UniversityLicensed as Creative Commons – attribution, no derivatives.