tag:theconversation.com,2011:/fr/topics/voluntary-euthanasia-4256/articlesVoluntary euthanasia – 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/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>
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<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>
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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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<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>
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<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>
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<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>
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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>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>
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<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">
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<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>
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<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>
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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>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>
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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 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>
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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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<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/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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<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>
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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>
</strong>
</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>
</strong>
</em>
</p>
<hr>
<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>
<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>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>
<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>
<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/1619822021-06-28T19:52:55Z2021-06-28T19:52:55ZVoluntary assisted dying will begin in WA this week. But one Commonwealth law could get in the way<figure><img src="https://images.theconversation.com/files/408581/original/file-20210628-13-jyec48.jpg?ixlib=rb-1.1.0&rect=31%2C0%2C3500%2C2331&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-hands-on-keyboard-346505600">Shutterstock</a></span></figcaption></figure><p>Voluntary assisted dying has been a legal option <a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-victoria-and-this-is-what-you-need-to-know-111836">for Victorians</a> since June 2019. </p>
<p>On July 1, it will become available <a href="https://www.abc.net.au/news/2021-06-17/voluntary-assisted-dying-wa-unlikely-to-be-widely-used/100220810">in Western Australia</a>, which was the second Australian state <a href="https://theconversation.com/western-australia-looks-set-to-legalise-voluntary-assisted-dying-heres-whats-likely-to-happen-from-next-week-128386">to legalise</a> voluntary assisted dying. </p>
<p><a href="https://www.abc.net.au/news/2021-06-24/euthanasia-voluntary-assisted-dying-approved-by-sa-parliament/100236608">Tasmania and South Australia</a> have since followed, and are preparing to enact voluntary assisted dying laws.</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>
</strong>
</em>
</p>
<hr>
<p>Unfortunately, while Victorians have the right to request voluntary assisted dying under <a href="https://www.legislation.vic.gov.au/in-force/acts/voluntary-assisted-dying-act-2017/005">Victorian law</a>, a Commonwealth legal impediment makes it unduly difficult to access this service.</p>
<p>Commonwealth law makes it a crime to use a “<a href="https://www.legislation.gov.au/Details/C2005A00092">carriage service</a>” for the purposes of conveying “suicide related material”.</p>
<h2>What does that mean?</h2>
<p>You might think of a “carriage service” as letters being delivered on a 19th Century mail coach. But it actually relates to modern communication technologies including the telephone, SMS, email, internet and videoconferencing. </p>
<p>Posted letters and face-to-face conversations are allowed. </p>
<p>The Commonwealth law was not designed to thwart legal assisted dying. It was passed <a href="https://www.legislation.gov.au/Details/C2005A00092">in 2005</a>, well before any state legislation was enacted. Its stated intent was to prevent things such as <a href="https://eprints.qut.edu.au/207083/">incitement to commit suicide</a> by cyber bullies or the promotion of suicide methods to those who are vulnerable and depressed.</p>
<p>But in relation to voluntary assisted dying, the practical effect is that using modern communication to respond to a patient who requests voluntary assisted dying is a potential Commonwealth crime — even though it may be legal under state law. When laws conflict, federal legislation trumps state law.</p>
<figure class="align-center ">
<img alt="A man looks out the window." src="https://images.theconversation.com/files/408584/original/file-20210628-23-nrqvie.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/408584/original/file-20210628-23-nrqvie.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/408584/original/file-20210628-23-nrqvie.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/408584/original/file-20210628-23-nrqvie.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/408584/original/file-20210628-23-nrqvie.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/408584/original/file-20210628-23-nrqvie.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/408584/original/file-20210628-23-nrqvie.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">WA will become the second Australian state to enact voluntary assisted dying laws.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/older-sad-bald-man-siting-on-1817784155">Shutterstock</a></span>
</figcaption>
</figure>
<h2>A barrier to access</h2>
<p>A report on the operation of voluntary assisted dying in Victoria between <a href="https://www.bettersafercare.vic.gov.au/sites/default/files/2020-08/VADRB_Report%20of%20operations%20August%202020%20FINAL_0.pdf">January and June 2020</a> found the risk of prosecution under this law was a complicating factor for the medical community — and became even more so during the pandemic.</p>
<p>Although we haven’t seen voluntary assisted dying practitioners prosecuted under this law, they largely want to comply with the Commonwealth legislation, to avoid the risk of breaking the law and facing a hefty penalty. This makes the process of assessing patients’ requests for voluntary assisted dying both difficult and slow. </p>
<p>The Victorian Voluntary Assisted Dying Review Board has received reports of challenges faced by applicants who have had to attend face-to-face assessments. Without the option of telehealth, extremely unwell patients may have to undertake long and difficult journeys to have their eligibility assessed. This is especially problematic for patients who live in rural areas who may have to travel great distances to see a doctor who is willing to respond to their request (few doctors are credentialed to facilitate voluntary assisted dying). </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>If travel is impractical for the patient, the only other legal option is for a busy clinician to travel to the patient to perform the voluntary assisted dying assessment. In many cases the doctor may decide the assessment can’t be done. </p>
<p>The restriction also makes it potentially illegal for the doctor to phone their patient to inform them a permit has been issued, for the pharmacist to answer a patient’s ongoing query about the medication via email or phone, or for the care navigators (who help patients navigate the system) to provide advice or assistance over the phone. </p>
<figure class="align-center ">
<img alt="A doctor using a laptop." src="https://images.theconversation.com/files/408583/original/file-20210628-21-3k3dj0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/408583/original/file-20210628-21-3k3dj0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/408583/original/file-20210628-21-3k3dj0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/408583/original/file-20210628-21-3k3dj0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/408583/original/file-20210628-21-3k3dj0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/408583/original/file-20210628-21-3k3dj0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/408583/original/file-20210628-21-3k3dj0.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">Doctors have reported this Commonwealth law is frustrating.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/male-doctor-working-on-laptop-computer-1621820068">Shutterstock</a></span>
</figcaption>
</figure>
<h2>Pushing back</h2>
<p>Victoria essentially accepts the Commonwealth law, and <a href="https://www.theaustralian.com.au/nation/vad-medics-face-220k-telehealth-fine/news-story/303b0dc363d53f8b4f1ce39ade50968a">has discouraged doctors</a> from corresponding with patients on voluntary assisted dying over the phone or internet.</p>
<p>The massive size of WA means any restriction on modern communication will have a disproportionate effect for patients who may, as a result, have to travel many hundreds of kilometres for face-to-face consultations, and may have to depend on a postage service that can take days.</p>
<p>It seems clear the Commonwealth Criminal Code needs to be amended, but this will take time. In the interim the <a href="https://www.cdpp.gov.au/">Commonwealth Director of Public Prosecutions</a> needs to issue a guideline that, where a person is acting in accordance with state voluntary assisted dying legislation, offences in the Commonwealth Criminal Code will not be prosecuted. To date, requests by Victoria that this assurance be provided have proved unsuccessful.</p>
<p>With Queensland parliament set to debate voluntary assisted dying laws in September, Premier Annastacia Palaszczuk <a href="https://www.brisbanetimes.com.au/politics/queensland/queenslanders-trying-to-access-euthanasia-scheme-could-break-federal-law-20210525-p57v0y.html">recently wrote</a> to Prime Minister Scott Morrison requesting the federal government urgently amend the Commonwealth Criminal Code to exclude state government voluntary assisted dying schemes from this law. The Morrison government has <a href="https://www.theaustralian.com.au/nation/vad-medics-face-220k-telehealth-fine/news-story/303b0dc363d53f8b4f1ce39ade50968a">rejected this request</a>.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1407862673996279812"}"></div></p>
<h2>Patients are suffering</h2>
<p>Voluntary assisted dying is now in various of stages of legalisation and implementation across Australia, and repeated surveys confirm <a href="https://www.abc.net.au/news/2019-05-08/vote-compass-social-issues-euthanasia-transgender-republic-drugs/11087008">the overwhelming majority</a> of Australians support it.</p>
<p>Under these laws, terminally ill patients may well get the end they want, but not as efficiently as they desire, or should reasonably expect. Delay and inefficiency adds to anxiety and frustration at a time when patients and their families are at their most vulnerable.</p>
<p>Meanwhile, medical practitioners are frustrated, forced to choose between breaking the law and providing the care patients expect. </p>
<p>Australians expect government collaboration at all levels to deliver services that work as efficiently and effectively as possible. It doesn’t have to be like this.</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>
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<img src="https://counter.theconversation.com/content/161982/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Charles Corke is Deputy Chair of the Victorian Voluntary Assisted Dying Review Board and is a Senior Intensive Care Specialist at the University Hospital Geelong.</span></em></p>Under the Commonwealth Criminal Code, it’s an offence to use a ‘carriage service’ — which includes phone, videoconferencing or email —for the purposes of conveying ‘suicide related material’.Charles Corke, Associate Professor of Medicine, Deakin UniversityLicensed 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>
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<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>
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</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>
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<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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<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>
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<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>
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<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/1491382020-10-30T01:16:37Z2020-10-30T01:16:37ZAssisted dying will become legal in New Zealand in a year — what has to happen now?<figure><img src="https://images.theconversation.com/files/366636/original/file-20201030-13-1c8b31a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">shutterstock</span> </figcaption></figure><p>The preliminary results of New Zealand’s referendum on the End of Life Choice Act were conclusive. Some 65.2% of voters supported the law coming into force, while 33.8% opposed it.</p>
<p>Although around 480,000 special votes are still to be counted, the margin is so great there is no chance these will alter the final outcome. Consequently, the <a href="http://www.legislation.govt.nz/act/public/2019/0067/latest/DLM7285970.html">End of Life Choice Act 2019</a> will come into force on November 6 2021, one year after the official vote is announced next week. </p>
<p>It will then become lawful to offer assisted dying (AD) to terminally ill individuals who meet the legislation’s eligibility criteria. The delay in the law taking effect provides a 12-month window to implement the necessary arrangements for AD to take place. </p>
<p>One significant issue yet to be determined is whether AD services will be specifically funded, and if so how. The Ministry of Health will need to resolve this over the next year.</p>
<p>In the meantime, what needs to happen next? Immediate priorities for the Director-General of Health under the legislation are: </p>
<ul>
<li><p>to appoint a Registrar (assisted dying)</p></li>
<li><p>to establish the Support and Consultation for End of Life in New Zealand (SCENZ) Group</p></li>
<li><p>to appoint an End of Life Review Committee.</p></li>
</ul>
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<h2>The role of the Registrar (assisted dying)</h2>
<p>The Registrar (assisted dying) plays a core role in monitoring and reporting on compliance with the Act. They will also direct any complaints about AD to the appropriate bodies. </p>
<p>The Act, administered by the Ministry of Health, requires adherence to strict regulatory processes. These must be documented in prescribed forms submitted to the Registrar before AD may be performed. </p>
<p>Approving and issuing these prescribed forms falls to the Director-General of Health. </p>
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<strong>
Read more:
<a href="https://theconversation.com/as-nz-votes-on-euthanasia-bill-here-is-a-historical-perspective-on-a-good-death-126580">As NZ votes on euthanasia bill, here is a historical perspective on a 'good death'</a>
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<h2>What SCENZ will do</h2>
<p>Curiously, the Act does not prescribe the composition of the SCENZ Group. It simply requires that the Director-General appoint members with the necessary knowledge and understanding to perform its functions. </p>
<p>The group essentially has two roles: </p>
<ul>
<li><p>to determine standards of care and advise on the required medical and legal procedures for the administration of medication for AD</p></li>
<li><p>to provide practical assistance if requested. </p></li>
</ul>
<p>The second role is largely administrative and facilitative. SCENZ is required to curate and maintain a list of health practitioners willing to be involved in AD, which includes: </p>
<ul>
<li><p>doctors willing to act as replacement medical practitioners should a person’s own doctor be unwilling to participate in AD due to conscientious objection</p></li>
<li><p>medical practitioners willing to provide an independent second opinion on a person’s eligibility for AD</p></li>
<li><p>psychiatrists willing to provide specialist opinions on a person’s capacity, should either or both the attending or independent medical practitioners not be satisfied that the person requesting AD is competent</p></li>
<li><p>pharmacists willing to dispense the necessary drugs. </p></li>
</ul>
<p>Given these functions, the SCENZ group will presumably be comprised of suitably qualified medical practitioners and pharmacists as well as individuals with knowledge of the relevant law and tikanga Māori, although its final composition remains to be seen.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/assisted-dying-referendum-people-at-the-end-of-their-lives-say-it-offers-a-good-death-144112">Assisted dying referendum: people at the end of their lives say it offers a 'good death'</a>
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<h2>Compliance and review</h2>
<p>The Director-General of Health must also appoint a three-person End of Life Review Committee. This body is tasked with evaluating reports of assisted deaths to determine if the statutory requirements are being complied with. It can refer cases to the Registrar if it is not satisfied. </p>
<p>The Act requires the committee to be comprised of one ethicist and two health practitioners, one of whom must be practising end-of-life care.</p>
<h2>Role of the Medical Council</h2>
<p>Given the medical profession will have primary responsibility for providing AD, it’s likely its professional body, the <a href="https://www.mcnz.org.nz/">Medical Council of New Zealand</a>, will need to begin formulating and consulting on clinical practice standards for medical practitioners involved in providing or facilitating AD.</p>
<p>While the council publishes generic standards of professional practice, including standards for obtaining informed consent and cultural safety, specific guidance should be developed for AD. </p>
<p>The standards should incorporate the legal obligations imposed on medical practitioners under the Act. These include the prohibition on initiating a discussion of AD with a patient, and the legal obligation to inform a patient of their right to a replacement medical practitioner if their doctor objects to AD. </p>
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<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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<p>The Medical Council could also provide guidance on clinical practice issues that may arise, including ways of identifying coercion, or how to manage difficult conversations with patients (such as when they are found to be ineligible under the Act). </p>
<h2>Objection and obligation</h2>
<p>Significantly, the Act doesn’t require health institutions to provide AD services. Hospice New Zealand has already <a href="https://www.hospice.org.nz/resources/end-of-life-choice-act-our-concerns/">signalled</a> it will not provide AD, as it is contrary to its philosophy “neither to hasten nor to postpone death”. </p>
<p>However, a recent <a href="https://forms.justice.govt.nz/search/Documents/pdf/jdo/8b/alfresco/service/api/node/content/workspace/SpacesStore/bab8773d-b3eb-4caf-8e09-cf7a84cef0fc/bab8773d-b3eb-4caf-8e09-cf7a84cef0fc.pdf">High Court decision</a> notes that although institutions may choose not to provide AD, medical practitioners will still be required to discharge their obligations under the Act — including the obligation to provide information to patients. </p>
<p>Although an organisation may elect not to provide AD, it may employ medical practitioners who are willing to. Provisions will need to be made to enable such practitioners to provide AD outside their own organisation. This is an area that will require careful navigation.</p><img src="https://counter.theconversation.com/content/149138/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors 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>The detailed work of making the End of Life Choice Act work in practice now begins, including the decision about how assisted dying will be funded.Jeanne Snelling, Lecturer, University of OtagoAndrew Geddis, Professor of Law, University of OtagoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1471702020-10-06T23:04:40Z2020-10-06T23:04:40ZThe rise of ACT in 2020 highlights tensions between the party’s libertarian and populist traditions<p>New Zealand’s election is coming down to a simple contest between the Labour-Green bloc on the left and the National-ACT bloc on the right. Although the right is behind in the polls, if it were to gain the majority, ACT Party leader David Seymour could become deputy prime minister. </p>
<p>Either way, ACT is newly assertive. Although Seymour owes his Epsom seat to National’s grace and favour, he seems less inclined nowadays to be their political lapdog. He wants people to support ACT on its own terms.</p>
<p>Remarkably, the party has risen in opinion polls from below 1% to <a href="https://www.newshub.co.nz/home/politics/2020/09/nz-election-2020-labour-s-support-slips-can-t-govern-alone-in-new-poll.html">recently</a> as high as 8%. That would give ACT up to ten seats in parliament. Would Seymour also negotiate to bring one or more first-time MPs into cabinet alongside him?</p>
<p>In the past two elections, ACT held on with only one electorate seat, thanks to the National Party deal: Epsom’s National supporters agree to vote for the ACT candidate as their local representative but give their party vote to National.</p>
<p>This <a href="https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11919181">arrangement</a> goes back to 2005. It paid a handsome dividend in 2008 when ACT won Epsom and achieved 3.65% in the party vote. This delivered the party a proportional share of five seats, despite being below the 5% party-vote threshold. </p>
<p>With ACT’s support on the right, and two other parties in the centre, John Key formed a National-led government that lasted three terms. Then ACT’s party vote fell below 1% in 2014 and 2017, with only the Epsom seat keeping it in parliament.</p>
<p>In 2020, however, after a term in opposition and no longer overshadowed by National, ACT is flourishing again. </p>
<h2>ACT rises at National’s expense</h2>
<p>Seymour has held his own, speaking up for freedom of speech and <a href="https://www.newshub.co.nz/home/politics/2019/04/david-seymour-why-i-oppose-the-gun-reforms.html">opposing</a> the banning of semi-automatic guns following the mosque shootings in March 2019. He introduced a member’s bill to permit euthanasia that is likely to come into force after a decisive <a href="https://www.referendums.govt.nz/endoflifechoice/index.html">referendum</a> to be held alongside the general election.</p>
<p>However, National leader Judith Collins has bluntly <a href="https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12367428">stated</a> she sees ACT’s job as being to win Epsom and to help eliminate the populist New Zealand First Party, which on recent polling is likely to be ousted from parliament on October 17. </p>
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<strong>
Read more:
<a href="https://theconversation.com/the-missing-question-from-new-zealands-cannabis-debate-what-about-personal-freedom-and-individual-rights-146304">The missing question from New Zealand's cannabis debate: what about personal freedom and individual rights?</a>
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<p>ACT’s rise in the <a href="https://www.newshub.co.nz/home/politics/2020/09/newshub-reid-research-poll-for-the-first-time-exclusive-polling-shows-how-voting-habits-changed-since-last-election.html">polls</a> does come partly from those conservative erstwhile New Zealand First voters who are disillusioned with Winston Peters for forming a coalition government with Labour.</p>
<p>But Collins must be worried that some centre-right voters have given up on National winning and are exercising their freedom of choice by <a href="https://www.newsroom.co.nz/the-secret-to-acts-popularity">defecting</a> to ACT — and she wants them back.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/361756/original/file-20201005-22-s6zzej.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/361756/original/file-20201005-22-s6zzej.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/361756/original/file-20201005-22-s6zzej.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/361756/original/file-20201005-22-s6zzej.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/361756/original/file-20201005-22-s6zzej.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/361756/original/file-20201005-22-s6zzej.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/361756/original/file-20201005-22-s6zzej.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">Recent surveys show ACT picking up voters from National, Labour and the Māori Party.</span>
<span class="attribution"><span class="source">Screenshot/Newshub-Reid Research</span></span>
</figcaption>
</figure>
<h2>What ACT supporters want</h2>
<p>The <a href="https://www.act.org.nz/principles">Association of Consumers and Taxpayers</a> was founded in 1993 by former National cabinet minister Derek Quigley and Sir Roger Douglas, formerly minister of finance in David Lange’s Labour government and engineer of the economic deregulation that became known as “Rogernomics”.</p>
<p>The party stands for less government, more private enterprise and freedom of choice. It is therefore a child of neoliberalism — indeed, its only legitimate child. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/assisted-dying-referendum-people-at-the-end-of-their-lives-say-it-offers-a-good-death-144112">Assisted dying referendum: people at the end of their lives say it offers a 'good death'</a>
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</em>
</p>
<hr>
<p>For example, Seymour’s referendum bill to allow assisted dying (euthanasia) was officially named the <a href="https://www.parliament.nz/en/pb/bills-and-laws/bills-proposed-laws/document/BILL_74307/end-of-life-choice-bill">End of Life Choice Bill</a>, asserting its ideological origins with the word “choice”. He is <a href="https://www.act.org.nz/budget2020">proposing</a> much more radical cuts to public spending and taxation than his only possible coalition partner, National.</p>
<p>We gained an insight into how ACT supporters think from the online reader-initiated <a href="https://www.massey.ac.nz/massey/about-massey/news/article.cfm?mnarticle_uuid=76E7E758-24B0-44C8-88E1-4B276399ECE3">Stuff/Massey opinion poll</a> in July. Compared with the other parties in parliament, ACT supporters stand out as:</p>
<ul>
<li><p>most likely to rate the New Zealand government’s overall response to COVID-19 as “unsuccessful”: 29.5% compared with 9.9% for the whole sample</p></li>
<li><p>most strongly in favour of abolishing the Māori electoral roll: 68.2% compared with 36.6% overall</p></li>
<li><p>more likely to prefer that the government take a “cautious and sceptical” approach on climate change: 72.5% compared with 36.4% overall</p></li>
<li><p>more in favour of the country getting back to “business as usual” rather than reforming the economic system itself during the post-pandemic rebuild: 75% compared with 31% overall.</p></li>
</ul>
<h2>Populist or purist?</h2>
<p>ACT supporters’ values are largely diametrically opposed to those upheld by Green supporters, as might be expected of a libertarian party that stands for individualism and deregulation. </p>
<p><a href="https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10007322">In the past</a>, though, the party has resorted to populist law-and-order and anti-welfare policies. In 2011 it deployed the “<a href="https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10764866">one law for all</a>” slogan to attack policies addressing indigenous rights.</p>
<p>As ACT leader since 2014, Seymour has steered the party back towards free-market liberalism. But there is still an element of right-wing populist thinking among ACT’s supporters. </p>
<p>Sizeable minorities of them agree with conspiracy theories about COVID-19 (25%) and hope Donald Trump is re-elected in November (32%) — more than among National supporters who stood at about 20% on both points.</p>
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Read more:
<a href="https://theconversation.com/nz-election-2020-survey-shows-voters-are-divided-on-climate-policy-and-urgency-of-action-146569">NZ election 2020: survey shows voters are divided on climate policy and urgency of action</a>
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<p>If current polling holds true, Seymour will bring with him into parliament a caucus of freedom-loving individuals, none of whom has any previous representative experience. </p>
<p>Among them is a firearms enthusiast, a former police officer and a farmer. At number seven on the list is a <a href="https://www.act.org.nz/karen-chhour">self-employed mother of four</a> who the party claims “is better than ten ivory tower ‘experts’” when it comes to beating poverty.</p>
<p>So far, ACT’s best election result was in 2002 when it gained 7.14% of the party vote and nine seats in the 120-seat House of Representatives. If it repeats that in 2020, Seymour will go from being a lone voice for his party to the leader of a small but inexperienced caucus.</p>
<p>Managing that team of individualistic newbies may well be the first test of his libertarian instincts.</p><img src="https://counter.theconversation.com/content/147170/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Grant Duncan 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>Climbing in the polls and less inclined to be National’s political lapdog, is the ACT Party more or less than the sum of its parts?Grant Duncan, Associate Professor, School of People, Environment and Planning, Massey UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1441122020-09-30T02:15:29Z2020-09-30T02:15:29ZAssisted dying referendum: people at the end of their lives say it offers a ‘good death’<figure><img src="https://images.theconversation.com/files/360460/original/file-20200929-22-1es57sv.jpg?ixlib=rb-1.1.0&rect=43%2C137%2C5708%2C3414&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock/Photographee eu</span></span></figcaption></figure><p>According to the latest <a href="https://static.colmarbrunton.co.nz/wp-content/uploads/2019/05/17-21-September-2020_1-NEWS-Colmar-Brunton-Poll-report-.pdf">1 News Colmar Brunton poll</a>, almost two-thirds of New Zealanders are planning to vote yes in the upcoming <a href="https://www.referendums.govt.nz/endoflifechoice/index.html?gclid=EAIaIQobChMInoeBsOGK7AIVCFRgCh3k6wTUEAAYASAAEgIazvD_BwE">referendum on assisted dying</a>. </p>
<p>Our <a href="https://www.tandfonline.com/doi/full/10.1080/1177083X.2018.1532915">research</a> shows this number aligns with the past 20 years of polling, which suggests stable support for the idea. </p>
<p>The <a href="https://www.referendums.govt.nz/endoflifechoice/index.html">referendum</a>, to be held at the general election on October 17, will decide whether the <a href="http://www.legislation.govt.nz/act/public/2019/0067/latest/DLM7285905.html">End of Life Choice Act 2019</a> comes into force.</p>
<p>The act authorises a doctor to administer or prescribe a lethal dose of medication to competent adults suffering unbearably from a terminal illness that would likely end their life within six months — as long as they request it directly and voluntarily. </p>
<p>A person will not be eligible if their only reason is that they have a mental illness or a disability of any kind, or are of advanced age. Overall, the Act has more than 45 safeguards that must be met. </p>
<p>Understandably, discussions about assisted dying produce strong reactions. Evidence-based information is essential and we must sort <a href="https://theconversation.com/separating-fact-from-fiction-about-euthanasia-in-belgium-58203/">fact from fiction</a>, particularly about any hypothetical social consequences of the legalisation. </p>
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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>
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<p>Having the option of assisted dying available <em>if</em> they needed it appealed to the terminally ill participants in my <a href="https://ourarchive.otago.ac.nz/handle/10523/10395">doctoral research</a>. Assisted dying guaranteed what they understood as a good death, including being able to <a href="http://apm.amegroups.com/article/view/45543">choose the timing and way they died</a>. </p>
<p>Participants also felt dying would be difficult for their families if it took too long and they themselves would know best the <a href="https://www.newsroom.co.nz/2020/05/08/1158585/when-is-the-right-time-to-die">right time for them to die</a>. They felt medicine and religion shouldn’t get to decide what’s right for society as they didn’t know <a href="http://apm.amegroups.com/article/view/45543">what it was like</a> to approach the end of life. They saw the tight controls on assisted dying as a good thing and wanted it to be safe for everyone. </p>
<h2>Coercion or consent?</h2>
<p>The latest and largest <a href="https://jamanetwork.com/journals/jama/article-abstract/2532018">review of international research</a> on assisted dying, carried out by highly respected researchers in this field (including those who oppose it), concluded: “Existing data do not indicate widespread abuse of these practices.”</p>
<p><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2652799/">Evidence</a> from the Netherlands and the US state of Oregon, where assisted dying is legal, shows concerns it would disproportionately affect people from vulnerable groups are unfounded. Instead, those who access assisted dying appear to be economically and socially privileged. </p>
<p>Of course, the health system is by no means perfect. Its problems include inequitable access, systemic racism and ableism. But denying dying people the right to choose is not going to change those disparities. </p>
<p>We can let terminally ill people make choices about how and when they die as well as advocate for a system that doesn’t force those choices on others.</p>
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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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<p>Providing robust safeguards in legislation deals with the concerns about vulnerable groups. The New Zealand law requires two (or even three) independent doctors to confirm the request is genuinely voluntary and informed. They also have to speak to the person over a number of sessions to ensure the patient’s decision is unwavering. If any pressure is suspected at any stage, the doctor must stop the process immediately and report it to the Registrar Assisted Dying.</p>
<p>Although there is scepticism about whether everybody would comply with safeguards, there is <a href="https://thespinoff.co.nz/society/23-09-2020/the-end-of-life-choice-bill-is-safer-than-many-of-our-current-critical-care-laws/">equally a concern</a> about decisions to withdraw life-sustaining interventions or administer pain relief that may hasten death. These are just as susceptible to abuse as assisted dying, but are already lawful. Dying people prefer a <a href="https://pubmed.ncbi.nlm.nih.gov/32648455/">quick death</a> to a long, drawn-out or violent death. </p>
<p>In fact, 5.6% of New Zealand’s general practitioners (and nurses under their instruction) who responded to an international standardised survey admit they are <a href="https://pubmed.ncbi.nlm.nih.gov/26367357/">intentionally hastening death</a> regardless of the legality, and not always with patients’ consent. These findings should be interpreted alongside <a href="https://pubmed.ncbi.nlm.nih.gov/26367357/">research</a> that suggests one-third of New Zealand doctors may not honestly answer questions about assisted dying. </p>
<p>It is safer to bring the practice of hastening death out into the open so doctors who are willing to administer an assisted death can be regulated and monitored and patients can give informed consent.</p>
<h2>Contagion or conversation?</h2>
<p>Some have suggested a contagion effect if assisted dying is legalised. As we have slowly learned with suicide, talking about suicide is more likely to <a href="https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(18)30041-5/fulltext">prevent it</a>. An in-depth study in the Netherlands similarly concluded that talking about euthanasia <a href="https://www.tandfonline.com/doi/abs/10.1080/01459740701283165?journalCode=gmea20">prevents euthanasia</a> most of the time. </p>
<p>Legalised assisted dying will open up conversations about what people want at the end of life as it has done in <a href="https://jamanetwork.com/journals/jama/fullarticle/193817">other jurisdictions</a>.</p>
<p>In terms of New Zealand evidence, the world-renowned <a href="https://journals.sagepub.com/doi/abs/10.1080/j.1440-1614.2004.01334.x?journalCode=anpa">longitudinal study</a> of 987 25-year-olds found they distinguish between suicide and euthanasia. If 25-year-olds can see the difference, surely others can too? </p>
<p>Those bereaved by assisted dying witness less suffering and the impact on them is <a href="https://pubmed.ncbi.nlm.nih.gov/31657640/">similar or no worse</a> than other deaths.</p>
<p>If people vote for this law to come into force, there will be fewer suicides because terminally ill New Zealanders are sadly <a href="https://pubmed.ncbi.nlm.nih.gov/28807701/">taking their own lives</a>. </p>
<p>If assisted dying is legalised, dying people will <a href="https://www.medpagetoday.com/Geriatrics/GeneralGeriatrics/49878">experience less suffering</a> at the end of life; there won’t be more deaths because the only people eligible are already dying.</p>
<p>As a dying person said to me in an interview for my research:</p>
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<p>I think that there’s a profound principle in there somewhere, that people ought to have some, some way of saying this is long enough. </p>
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<p>The views of people approaching the end of life are startlingly absent from the debate about legalisation. This is a rare opportunity to have input into passing a <a href="http://yesforcompassion.org.nz/">compassionate</a> piece of law on their behalf.</p><img src="https://counter.theconversation.com/content/144112/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jessica Young is affiliated with YesForCompassion.org.nz, which shares dying people’s reasons for wanting choice and aims to educate the public by providing trustworthy, evidence-based information on the End of Life Choice Act 2019 in the lead up to the referendum. Jessica received funding from the University of Otago and the HOPE Selwyn Foundation, neither of whom
had any influence over any aspects of the research.</span></em></p>Terminally ill research participants wanted to have the option of assisted dying if they needed it, and felt they knew best when the time was right for them to die.Jessica Young, PhD Candidate in Medical Sociology, University of OtagoLicensed 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">
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<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>
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<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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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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<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">
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<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>
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<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>
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<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>
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<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/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>
</figcaption>
</figure>
<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>
<p>[ <em>Like what you’ve read? Want more?</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=likethis">Sign up for The Conversation’s daily newsletter</a>. ]</p><img src="https://counter.theconversation.com/content/129424/count.gif" alt="The Conversation" width="1" height="1" />
<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.tag:theconversation.com,2011:article/1283862019-12-06T01:08:04Z2019-12-06T01:08:04ZWestern Australia looks set to legalise voluntary assisted dying. Here’s what’s likely to happen from next week<figure><img src="https://images.theconversation.com/files/305300/original/file-20191205-16501-10c01s4.jpg?ixlib=rb-1.1.0&rect=1%2C5%2C997%2C666&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">If the bill clears its final hurdle next week, Western Australia will become the second state in Australia after Victoria to legalise voluntary assisted dying.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/man-holding-hand-giving-support-comfort-1576363936?src=57e52c98-f962-4eca-908c-997df30b1588-1-19&studio=1">from www.shutterstock.com</a></span></figcaption></figure><p>Western Australia is on the brink of becoming the second state in Australia to legalise voluntary assisted dying, with its upper house last night <a href="https://www.abc.net.au/news/2019-12-05/wa-voluntary-euthanasia-law-passes-upper-house-vote/11771302">passing the Voluntary Assisted Dying Bill 2019 (WA)</a>. </p>
<p>A total of 55 amendments to the <a href="https://ww2.health.wa.gov.au/%7E/media/Files/Corporate/general%20documents/Voluntary%20assisted%20dying/PDF/Voluntary-Assisted-Dying-Bill-2019.pdf">initial version of the bill</a> were passed. The bill will return to the lower house next week to review the amendments.</p>
<p>If these amendments are ratified as expected, WA will follow the historic <a href="https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/voluntary-assisted-dying">introduction of voluntary assisted dying in Victoria</a>, where the option has been available since June 2019.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1202535291786948609"}"></div></p>
<h2>Remind me again, how did we get here?</h2>
<p>WA Premier Mark McGowan <a href="https://www.mediastatements.wa.gov.au/Pages/McGowan/2019/08/Landmark-voluntary-assisted-dying-legislation-to-be-introduced.aspx">announced</a> the government’s voluntary assisted dying bill in August 2019.</p>
<p>The proposed legislation was developed after recommendations from a <a href="https://www.parliament.wa.gov.au/Parliament/commit.nsf/(Report+Lookup+by+Com+ID)/71C9AFECD0FAEE6E482582F200037B37/%24file/Joint%20Select%20Committe%20on%20the%20End%20of%20Life%20Choices%20-%20Report%20for%20Website.pdf">parliamentary inquiry into end of life choices</a>, and subsequent <a href="https://ww2.health.wa.gov.au/%7E/media/Files/Corporate/general%20documents/Voluntary%20assisted%20dying/PDF/voluntary-assisted-dying-final-report.pdf">ministerial expert panel on voluntary assisted dying</a>. </p>
<p>After <a href="https://www.abc.net.au/news/2019-09-07/voluntary-euthanasia-debate-brings-out-worst-in-wa-parliament/11485370">lengthy debate</a>, the bill <a href="https://www.abc.net.au/news/2019-09-24/voluntary-euthanasia-bill-passes-through-wa-lower-house/11544362">passed the lower house in September</a> (45 votes to 11). </p>
<p>Debate in the upper house was also extensive, and <a href="https://www.abc.net.au/news/2019-10-31/vad-opponents-accused-of-filibustering/11656258">hundreds of amendments to the bill were proposed</a>. A total of 55 amendments were eventually included, and the bill <a href="https://www.abc.net.au/news/2019-12-05/wa-voluntary-euthanasia-law-passes-upper-house-vote/11771302">passed the upper house last night</a> by 24 votes to 11.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/the-fear-that-dare-not-speak-its-name-how-language-plays-a-role-in-the-assisted-dying-debate-86308">The fear that dare not speak its name: how language plays a role in the assisted dying debate</a>
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<h2>What does the proposed legislation permit?</h2>
<p>The initial version of the bill featured <a href="https://www.parliament.wa.gov.au/publications/tabledpapers.nsf/displaypaper/4013204c4272e00709c300b0482584820008706e/$file/tp-3204.pdf">102 “safeguards”</a>, including the regulation of access, the request and assessment process, administration and management of the voluntary assisted dying substance, mandatory reporting, protections for health practitioners, and oversight mechanisms.</p>
<p>As outlined in <a href="https://ww2.health.wa.gov.au/%7E/media/Files/Corporate/general%20documents/Voluntary%20assisted%20dying/PDF/Voluntary-Assisted-Dying-Bill-2019.pdf">the proposed legislation</a>, to access voluntary assisted dying in WA a person would need to:</p>
<ul>
<li><p>be aged 18 years or more, and</p></li>
<li><p>have lived in WA for at least 12 months, and be an Australian citizen or permanent resident, and</p></li>
<li><p>have the capacity to make decisions about voluntary assisted dying, and </p></li>
<li><p>be acting voluntarily and without coercion.</p></li>
</ul>
<p>The person would also need to be diagnosed with a disease, illness, or medical condition that is:</p>
<ul>
<li><p>advanced and progressive, and anticipated to cause death, and</p></li>
<li><p>anticipated to cause death within no more than six months, or no more than 12 months for those with a neurodegenerative diagnosis, and</p></li>
<li><p>causing suffering to the person that cannot be relieved in a way the person considers tolerable.</p></li>
</ul>
<p>A person would not be eligible to access voluntary assisted dying only because they have a disability or are diagnosed with a mental illness.</p>
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<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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<p>Protections for health practitioners include provisions for “conscientious objection”. They would have the right to refuse to participate in the request and assessment process, and to participate in the prescription, supply, or administration of the voluntary assisted dying substance, including being present when it is administered.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/305498/original/file-20191205-39018-1kmjl62.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/305498/original/file-20191205-39018-1kmjl62.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/305498/original/file-20191205-39018-1kmjl62.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/305498/original/file-20191205-39018-1kmjl62.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/305498/original/file-20191205-39018-1kmjl62.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/305498/original/file-20191205-39018-1kmjl62.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/305498/original/file-20191205-39018-1kmjl62.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/305498/original/file-20191205-39018-1kmjl62.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">In Western Australia, eligible patients are expected to be able to request voluntary assisted dying in about 18 months.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/medicine-age-health-care-people-concept-326634497?src=74625a3d-7000-4c70-8ac0-f32c669809e6-1-0&studio=1">from www.shutterstock.com</a></span>
</figcaption>
</figure>
<p>Most of the amendments passed by the upper house <a href="https://www.sbs.com.au/news/assisted-dying-set-to-be-legalised-in-wa-after-laws-pass-upper-house">will not substantively change</a> the eligibility criteria or process to access voluntary assisted dying from the model initially proposed.</p>
<p>WA’s proposed approach is broadly similar to <a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-victoria-and-this-is-what-you-need-to-know-111836">the Victorian regime</a>, although there are several <a href="https://theconversation.com/was-take-on-assisted-dying-has-many-similarities-with-the-victorian-law-and-some-important-differences-121554">key differences</a>. </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>
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</em>
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<h2>What happens next?</h2>
<p>In a special sitting next week, the WA lower house will vote on each of the amendments. Given support for the legislation in the lower house already, <a href="https://www.sbs.com.au/news/wa-assisted-dying-laws-pass-the-upper-house">it is anticipated the amendments will be ratified</a>. </p>
<p>If the bill passes as expected, it will be about 18 months until the law comes into effect in WA.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/passed-away-kicked-the-bucket-pushing-up-daisies-the-many-ways-we-dont-talk-about-death-77085">Passed away, kicked the bucket, pushing up daisies – the many ways we don't talk about death</a>
</strong>
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<p>Following a similar process to Victoria, there will be an “implementation period”. This will allow time to develop resources for health services, health practitioners, and community members, and for training.</p>
<p>WA will also establish a Voluntary Assisted Dying Board, an independent statutory body to oversee voluntary assisted dying.</p>
<p>Overall, health services and health practitioners in WA, including those who choose not to participate, will need to prepare for the state’s introduction of voluntary assisted dying.</p><img src="https://counter.theconversation.com/content/128386/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Courtney Hempton receives funding from the Australian Government (Research Training Program Scholarship) and the Australian Research Council. She has previously been affiliated with the Monash Health Voluntary Assisted Dying Working Group and Voluntary Assisted Dying Steering Committee.</span></em></p>A marathon round of amendments and parliamentary debate will likely see voluntary assisted dying implemented in WA in around 18 months. It’s time to start preparing.Courtney Hempton, Associate Research Fellow, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1259752019-11-06T16:34:04Z2019-11-06T16:34:04ZHow hypothetical designs can help us think through our conversations about euthanasia<figure><img src="https://images.theconversation.com/files/300434/original/file-20191106-12455-1ez92se.jpg?ixlib=rb-1.1.0&rect=8%2C0%2C5742%2C3837&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Speculative design highlights many of the questions we still need to ask when it comes to euthanasia. </span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-man-holding-hand-his-ill-419729023?src=df818fb6-26e6-49f8-b807-83d3d5dacbbc-1-9">Photographee.eu/Shutterstock</a></span></figcaption></figure><p>Belgian Paralympic athlete Marieke Vervoort revealed two years ago that in 2008, she had been <a href="https://theconversation.com/marieke-vervoort-and-how-the-right-to-euthanasia-can-help-some-people-to-live-better-65485">approved to receive euthanasia</a>. The Paralympian was an accomplished wheelchair racer, having won gold and silver at the London 2012 Paralympics, and silver and bronze at the 2016 Rio Games. However, she suffered from an <a href="https://www.bbc.co.uk/sport/disability-sport/50145393">incurable degenerative muscle disease</a> that caused constant pain, seizures, and in Vervoort’s case, paralysis in her legs. In October 2019, Vervoort made the decision to end her life through euthanasia at the age of 40. </p>
<p>Euthanasia remains a <a href="https://www.care.org.uk/our-causes/sanctity-life/arguments-for-and-against-euthanasia">controversial medical procedure</a>. <a href="https://www.nhs.uk/conditions/euthanasia-and-assisted-suicide/#:%7E:targetText=Euthanasia%20and%20assisted%20suicide,person's%20life%20to%20relieve%20suffering.&targetText=Assisted%20suicide%20is%20the%20act,another%20person%20to%20kill%20themselves.">Euthanasia</a> is when a person makes a conscious decision to die, and asks for help in doing so. This might be receiving a doctor or other person to help them. It’s different from assisted suicide, where someone assists an person in taking their own life but the final deed is still done by the individual. </p>
<p>While some proponents, like Vervoort, argue that it can ease suffering, and give a person <a href="https://www.nbc-2.com/story/41220297/belgian-paralympian-marieke-vervoort-dies-aged-40-through-euthanasia">agency over their own life</a>, others argue that euthanasia is unnatural, and is difficult to properly control – especially in the case of patients who might not be able to fully consent. </p>
<p>Euthanasia has been legal in Belgium since 2002. However, it’s still currently <a href="https://www.theguardian.com/news/2019/jul/15/euthanasia-and-assisted-dying-rates-are-soaring-but-where-are-they-lega">only legal in a handful of countries</a>, including the Netherlands, Luxembourg, and Canada. Although Vervoort felt euthanasia gave her agency over her own life – especially as her condition worsened – her death still highlights many aspects of the moral and legal questions that need to be answered when it comes to euthanasia. Much of the current debate still taking place wonders whether anyone should be able to access it, under what circumstances, and the extent to which we should honour the individual’s choice. </p>
<h2>Having the right conversations</h2>
<p>My research sought to provide insight into how we can frame our conversations around euthanasia, through speculative design. The field of design is often described as a problem-solving activity. However, many problems are often simply too complex to be solved. The <a href="https://mitpress.mit.edu/books/speculative-everything">field of speculative design is unique</a> – it’s a method of designing that uses hypothetical prototypes or scenarios to highlight problems rather than solve them. Speculative designs can help <a href="http://www.auger-loizeau.com/projects/toothimplant">consider any potential unintended consequences</a> in a proposed scenario. </p>
<p>I sought to address the complicated moral dilemma of euthanasia by creating <a href="https://vimeo.com/231854700">The Plug</a>, an applied thought experiment which aimed to think through the <a href="https://repository.lboro.ac.uk/articles/Design_as_a_provocation_to_support_discussion_about_euthanasia_The_Plug/9351113/1">consequences of patient control</a> in euthanasia for dementia. </p>
<p>Some terminal conditions, such as dementia, pose more complications for euthanasia. For example, in the Netherlands, an increasing number of people are <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4929163/">opting to use euthanasia</a> after being diagnosed with dementia. An advance euthanasia directive is a document in which a person outlines what decisions should be made in the future, should they be unable to make those decision themselves. Currently, many advance directives make statements such as, “when I am no longer myself,” or “when I can’t recognise my children”, to outline when euthanasia should be administered. However, these conditions are hard to measure and comply with. </p>
<p>These advance euthanasia directives are also largely ignored by physicians having to perform euthanasia, because the symptoms of dementia clash with due care criteria – <a href="https://jme.bmj.com/content/34/9/e12#:%7E:text=These%20criteria%20hold%20that%3A%20there,be%20medically%20and%20technically%20appropriate.">the criteria</a> that a patient must fulfil in order to be administered euthanasia.</p>
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<strong>
Read more:
<a href="https://theconversation.com/if-assisted-dying-is-legalised-who-gets-to-decide-whose-life-is-worth-living-108625">If assisted dying is legalised, who gets to decide whose life is worth living?</a>
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</em>
</p>
<hr>
<p>In the Netherlands, one study found that <a href="https://doi.org/10.1111/j.1532-5415.2005.53354.x">only 3% of advance directives</a> are complied with. A person with dementia is often unable to consent at the time of death, which makes it difficult to establish whether the person’s suffering is “hopeless and unbearable” – one of the <a href="https://bmjopen.bmj.com/content/7/10/e017628">due care criteria for euthanasia</a> in the Netherlands.</p>
<h2>A hypothetical implant</h2>
<p>The Plug is a hypothetical implanted <a href="https://blogs.bmj.com/medical-ethics/2018/03/05/advance-euthanasia-directives-in-the-spotlight/">advance euthanasia directive</a> that would trigger a swift and painless death once the conditions described in the advance euthanasia directive are reached. My research was intended to address several issues, such as the rights of a person whose personality might be changed because of dementia, the need for advance directives to be much more detailed, as well as the difficulty that physicians may face when performing euthanasia. </p>
<p>The Plug would deal with the consent issue by creating a situation where the person requesting euthanasia is the one who consents. The person they might become as a result of dementia is deliberately excluded in this scenario in order to address who should have the right to decide – the person before dementia, or during dementia. </p>
<p>The Plug would hypothetically be installed in cognitively competent people who might be afraid of developing and living with dementia. The device would be connected to other health-trackers and sensors installed in the home – and potentially even loved ones – to measure if the pre-programmed conditions the patient wants to avoid are coming to pass. If this was the case, The Plug would be triggered, causing the person to die peacefully in their sleep. This scenario was designed to ask a number of questions about advanced euthanasia directives, including how conditions can be measured, and, if they can’t, what decision should be made – and whether it still should. </p>
<p>The <a href="https://repository.lboro.ac.uk/articles/Provoking_the_debate_on_euthanasia_in_dementia_with_design_/9338840">applied thought experiment of The Plug</a> has encouraged much conversation among expert stakeholders. It raised awareness about the need for advance directives to be much more specific. Additionally it highlighted the need to acknowledge the contrast in the rights of a person before and after living with dementia. The role of general practitioners was seen as very important, and it is recommended that these doctors initiate end-of-life conversations early, both with the patient and their loved-ones. In places where euthanasia becomes legal, GPs may need additional support or education in order to be able to do this well.</p>
<p>In order to die with dignity, people are increasingly planning their own death. But dementia complicates matters. A person requesting euthanasia must be suffering intolerably and must be able to confirm the request at time of death. However, in many cases with dementia, that “wish” can no longer be confirmed when the time comes. As debates around euthanasia continue, it’s important to consider all the inherent moral dilemmas that come with it.</p><img src="https://counter.theconversation.com/content/125975/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Marije De Haas has received funding for this research from Design Star, Centre for Doctoral Training, Arts and Humanities Council, UK. </span></em></p>Many people might want to choose how, when, and under what circumstances they die – but diseases like dementia can complicate advance euthanasia directives.Marije De Haas, Lecturer, designer, Loughborough UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1118362019-04-03T03:34:30Z2019-04-03T03:34:30ZVoluntary assisted dying will soon be legal in Victoria, and this is what you need to know<figure><img src="https://images.theconversation.com/files/265034/original/file-20190321-93063-1mjvt77.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Victoria will be the first state in Australia to legalise voluntary assisted dying.</span> <span class="attribution"><span class="source">From shutterstock.com</span></span></figcaption></figure><p>The <a href="http://www.legislation.vic.gov.au/Domino/Web_Notes/LDMS/PubStatbook.nsf/f932b66241ecf1b7ca256e92000e23be/B320E209775D253CCA2581ED00114C60/$FILE/17-061aa%20authorised.pdf">Voluntary Assisted Dying Act 2017 (Vic)</a> comes into effect on June 19, making Victoria the first state in Australia to allow “voluntary assisted dying”.</p>
<p>The legislation was passed in November 2017 following the recommendations of a <a href="https://www.parliament.vic.gov.au/lsic/article/2608">state parliamentary inquiry</a> into end of life choices, and a subsequent <a href="https://www2.health.vic.gov.au/about/publications/researchandreports/ministerial-advisory-panel-on-voluntary-assisted-dying-final-report">ministerial advisory panel</a> on voluntary assisted dying.</p>
<p>While Victoria is not the first jurisdiction in the world to offer some form of assisted death, the state’s legislation is unique in the way voluntary assisted dying will be regulated.</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>
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</em>
</p>
<hr>
<h2>What is voluntary assisted dying?</h2>
<p>Voluntary assisted dying refers to a doctor providing assistance to enable a patient to die. It may offer an additional “end of life” option for those considered eligible, allowing a person to choose to die sooner than otherwise anticipated. </p>
<p>A person may request voluntary assisted dying to avoid suffering that cannot be managed in a way they consider tolerable. It’s also a means to control the time and location of their death.</p>
<p>The Victorian regime primarily sets out a practice of “self-administration”, allowing a person to self-administer a prescribed lethal substance. A doctor doesn’t need to be present, though can be.</p>
<p>If a person is physically unable to self-administer, the legislation also provides for “practitioner administration”, allowing a medical practitioner to administer the substance in a way most appropriate for the patient.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/want-to-better-understand-victorias-assisted-dying-laws-these-five-articles-will-help-88310">Want to better understand Victoria's assisted dying laws? These five articles will help</a>
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</em>
</p>
<hr>
<h2>Who is eligible?</h2>
<p>To be eligible to access voluntary assisted dying a person must:</p>
<ul>
<li><p>be aged 18 or over</p></li>
<li><p>have lived in Victoria for at least one year before making a first request for voluntary assisted dying, and be an Australian citizen or permanent resident</p></li>
<li><p>have decision-making capacity in relation to voluntary assisted dying, meaning they must be able to understand, retain, and weigh information about voluntary assisted dying, and communicate their decision.</p></li>
</ul>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/266975/original/file-20190402-177193-17fecvk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/266975/original/file-20190402-177193-17fecvk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/266975/original/file-20190402-177193-17fecvk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/266975/original/file-20190402-177193-17fecvk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/266975/original/file-20190402-177193-17fecvk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/266975/original/file-20190402-177193-17fecvk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/266975/original/file-20190402-177193-17fecvk.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">There are several criteria a person must meet in order to qualify for voluntary assisted dying.</span>
<span class="attribution"><span class="source">From shutterstock.com</span></span>
</figcaption>
</figure>
<p>They must be diagnosed with a disease, illness, or medical condition that is assessed to be: </p>
<ul>
<li><p>incurable, advanced, and progressive</p></li>
<li><p>causing suffering that cannot be relieved in a way considered tolerable by the person</p></li>
<li><p>predicted to cause death within no more than six months, or no more than 12 months for those with a neurodegenerative diagnosis.</p></li>
</ul>
<p>Victoria is not establishing a “right” to voluntary assisted dying. This means there will not be universal access, and people cannot demand voluntary assisted dying.</p>
<p>Rather, access to voluntary assisted dying will depend on the availability of participating health services and medical practitioners, and the approval of the state.</p>
<h2>How does someone access voluntary assisted dying?</h2>
<p>The legislation outlines a formal procedure for accessing voluntary assisted dying, with specific requirements for making a request, assessment of eligibility, and processes for applying for a voluntary assisted dying permit. </p>
<p>In brief, the first step is a request, made directly by the person to a medical practitioner. This is followed by an initial assessment to determine eligibility, conducted by a “coordinating medical practitioner”.</p>
<p>Next, another doctor, called a “consulting medical practitioner” will conduct a second assessment to confirm the person’s eligibility. The patient will also need to make a second request, in the form of a written declaration, signed in the presence of two witnesses and the coordinating medical practitioner.</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>The patient will then need to make a third and final request to the coordinating medical practitioner at least nine days after the first request (unless death is likely to occur before).</p>
<p>Lastly, the coordinating medical practitioner will conduct a final review to certify the request and assessment process. They will then apply for a permit, either for self-administration or practitioner administration.</p>
<p>Either or both the coordinating or consulting medical practitioner may refer the patient to another specialist to assess aspects of the eligibility criteria if needed.</p>
<p>Importantly, at any stage of the process, a person who has requested access to voluntary assisted dying may change their mind and decide not to proceed.</p>
<h2>What safeguards are in place?</h2>
<p>The ministerial advisory panel on voluntary assisted dying detail <a href="https://www2.health.vic.gov.au/about/publications/researchandreports/ministerial-advisory-panel-on-voluntary-assisted-dying-final-report">68 “safeguards”</a>, considering aspects of eligibility and access, medication management and storage, protections for practitioners, and reporting and oversight. </p>
<p>Safeguards for <a href="https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/voluntary-assisted-dying/community-and-consumers">members of the community</a> include the required “voluntariness” for accessing voluntary assisted dying. </p>
<p>A person requesting voluntary assisted dying must have decision-making capacity at the time of the request. It’s not possible to make a request for voluntary assisted dying in an <a href="https://www.publicadvocate.vic.gov.au/medical-consent/advance-care-directive">advance care directive</a>.</p>
<p>A discussion about voluntary assisted dying must be initiated by the person directly, and cannot be initiated by a health practitioner.</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>Safeguards for <a href="https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/voluntary-assisted-dying/health-practitioners">health practitioners</a> include provisions for conscientious objection. This means doctors can refuse to participate in any processes related to voluntary assisted dying, including providing information, assessing eligibility, and prescribing or administering drugs.</p>
<p>Medical practitioners participating in voluntary assisted dying must hold certain registrations as relevant to their speciality, and must complete online or face-to-face training on voluntary assisted dying.</p>
<p>A <a href="https://www.premier.vic.gov.au/voluntary-assisted-dying-review-board-appointed">Voluntary Assisted Dying Review Board</a> has been established to monitor and report on the operation of voluntary assisted dying.</p>
<h2>Wider implications</h2>
<p>The state’s introduction of voluntary assisted dying represents a historic transformation of health law in Victoria.</p>
<p>The task now for the state is to operationalise the legislation in health policy and clinical care. A <a href="https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/voluntary-assisted-dying/vad-implementation-taskforce">Voluntary Assisted Dying Implementation Taskforce</a> has been established to prepare for and oversee practical implementation of voluntary assisted dying.</p>
<p>Navigating the complex legislation will <a href="https://www.mja.com.au/journal/2019/210/5/victorias-voluntary-assisted-dying-law-clinical-implementation-next-challenge">be a new challenge</a> for health services, health practitioners, and patients. It remains to be seen how Victoria’s voluntary assisted dying regime will work in practice.</p>
<hr>
<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>
</strong>
</em>
</p>
<hr>
<p>Whether or not one supports assisted death, Victoria’s approach to voluntary assisted dying raises a number of important questions; about the power of medicine and the role of medical practitioners, about medical treatment decision-making and end of life choices, and about dying and the value of death. </p>
<p>With <a href="https://www.parliament.qld.gov.au/work-of-committees/committees/HCDSDFVPC/inquiries/current-inquiries/AgedCareEOLPC">other jurisdictions</a> in Australia exploring the legalisation of some form of assisted death, the implementation of voluntary assisted dying in Victoria is under close scrutiny, both within the state and beyond.</p><img src="https://counter.theconversation.com/content/111836/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Courtney Hempton receives funding from the Australian Government (Research Training Program Scholarship). She is affiliated with the Monash Health Voluntary Assisted Dying Working Group.</span></em></p>From June 19, Victorians at the end of their lives can request medical assistance to die. Voluntary assisted dying may offer a new option for some, but the practice will be strictly regulated.Courtney Hempton, PhD Candidate, Monash UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1086252019-02-25T11:03:50Z2019-02-25T11:03:50ZIf assisted dying is legalised, who gets to decide whose life is worth living?<figure><img src="https://images.theconversation.com/files/255576/original/file-20190125-108367-gttu31.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Pryzmat/Shutterstock</span></span></figcaption></figure><p>Since the British parliament <a href="https://www.bbc.co.uk/news/health-34208624">rejected a bill</a> that would have legalised assisted dying back in 2015, campaigners have continued to push for a change in the law. Now, the Royal College of Physicians is <a href="https://www.rcplondon.ac.uk/projects/outputs/assisted-dying-survey-2019">polling its members</a> on whether the UK should permit assisted dying. A similar poll of doctors by the college in 2014 found that <a href="https://www.rcplondon.ac.uk/news/rcp-reaffirms-position-against-assisted-dying">a majority did not support</a> a change to the law. </p>
<p>In recent years, other countries have extended the laws governing euthanasia to gradually encompass cases of mental illness and non life-limiting conditions. But these pose serious threats to people with disabilities – and should be carefully considered in debates about changing the law in the UK. </p>
<p>In 2017, Canada legalised medical assistance in dying, which allows consenting adults suffering from grievous conditions which are deemed irremediable, to end their own life. The Canadian law <a href="https://www.camh.ca/-/media/files/pdfs---public-policy-submissions/camh-position-on-mi-maid-oct2017-pdf.pdf">does not explicitly exclude mental illness</a> as the sole underlying medical condition to access euthanasia. This has generated a controversial debate, with analysis suggesting that the criteria of “irremediable” is vague <a href="https://www.researchgate.net/publication/304326531_Should_assisted_dying_for_psychiatric_disorders_be_legalized_in_Canada">when applied to psychiatric conditions</a> and can vary between doctors. </p>
<p>In the Netherlands, where, since 2001, the law has allowed doctors to perform euthanasia at a patient’s request in cases of unbearable suffering without any prospect of improvement, it emerged that <a href="https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-018-0257-6">euthanasia has been administrated to people</a> with an intellectual disability and autism spectrum disorder. For these patients, the inability to cope with social circumstances, and the increasing dependency, solitude, depression and feeling of being a burden to others, were deemed enough to met the legal requirements of intolerable suffering, which make euthanasia permissible by law. </p>
<h2>The ‘slippery slope’</h2>
<p>The Canadian and Dutch cases are significant. Despite their strict guidelines, codes of practice regulating the assisted-dying protocols could gradually extend to all disabled and mentally ill patients who meet the criteria, even in the absence of a well-informed request. This could result in the termination of those lives that are considered undignified and purposeless by society. Such a scenario would effectively equate disability, mental disorders, even old age, to terminal illnesses, and deem them “intolerable” conditions to live in. </p>
<p>Today, media campaigns and celebrities are increasingly encouraging people <a href="https://www.headstogether.org.uk/">to talk about mental health issues</a> and not feel ashamed to ask for help, in an effort to reduce the negative stigma around it. Disability rights activists also feel required to openly explain why their life is worth living and they <a href="https://www.theguardian.com/commentisfree/2018/jun/01/disabled-people-assisted-dying-safeguards-pressure">do not want to die</a>. </p>
<p>Despite this, negative stereotypes and moral assumptions about people with disabilities or mental illnesses permeate public debates. In the UK, some ethicists have already called for <a href="http://news.bbc.co.uk/1/hi/7625816.stm">the lives of people with dementia to be ended</a> in the name of an unspecified concept of personal identity. </p>
<p>If we accept that a disabling condition that is lifelong but not life-limiting could be a criteria for euthanasia, the safeguards of assisted dying stand on unsteady ground. </p>
<p>As part of a <a href="https://www.tandfonline.com/doi/full/10.1080/23312521.2018.1499454">research project</a> on the ethical issues arising from the debate on disability and end of life, I <a href="https://www.tandfonline.com/doi/full/10.1080/23312521.2018.1481804">argued</a> that the right to end one’s life stands on the basis of philosophical concepts of agency, dignity, and autonomy. And that these concepts are in desperate need of reshaping if we look at the life of those living with a severe disability who depend on others for their care.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/255581/original/file-20190125-108351-1pmdczc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/255581/original/file-20190125-108351-1pmdczc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=402&fit=crop&dpr=1 600w, https://images.theconversation.com/files/255581/original/file-20190125-108351-1pmdczc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=402&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/255581/original/file-20190125-108351-1pmdczc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=402&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/255581/original/file-20190125-108351-1pmdczc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=505&fit=crop&dpr=1 754w, https://images.theconversation.com/files/255581/original/file-20190125-108351-1pmdczc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=505&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/255581/original/file-20190125-108351-1pmdczc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=505&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">In control?</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/486700894?src=XeNOKLLrqIf3J0zggHEgLA-1-2&size=medium_jpg">Zsolt Biczo/Shutterstock</a></span>
</figcaption>
</figure>
<p>In a control-obsessed society, dependency is considered a fate worse than death. Some argue that to seek medical assistance in dying is preferable than a natural death <a href="https://www.mydeath-mydecision.org.uk/info/docs/#lifecomplete">because it restores a person’s power to make a decision</a>, and it offers a way to avoid pain, shame and the feeling of having nothing to live for. But this is not really a “free” choice: disability charities report that disabled people fear feeling <a href="https://www.scope.org.uk/media/press-releases/july-2014/assisted-suicide-law">under pressure to end their lives</a> when they are made to feel ashamed of their condition or to feel that they are a burden to society. </p>
<p>In debates about assisted dying, a person’s power to bring about their own death has come to symbolise the expression of free will, autonomy and self-determination, whereas disability, mental disorders, and most of all a lack of autonomy are seen as something intrinsically bad. </p>
<h2>Relying on others</h2>
<p>For disabled people who already live their lives in a state of dependency, choosing to die so that they don’t have to rely on others will rarely be a determining factor.</p>
<p>And going one step further, such debates should recognise that we all live in a state of dependency. Nobody could really claim to be completely autonomous in their life without the aid of technology, healthcare, and – perhaps less obviously – the emotional support of friends, family, and loved ones. Vulnerability and interdependency are <a href="https://www.tandfonline.com/doi/full/10.1080/20502877.2016.1151255">an essential part of human nature and well-being</a>, and necessary for human flourishing. We experience dependency as children, and we grow to became part of a world of social structures and relations which are shaped by collaborations, mutual care, and reciprocal assistance. </p>
<p>If society forgets this and refuses to accept disability, illness and decline as a constitutive part of human existence, it will inevitably come to accept that death is preferable to dependency, and consequently that the termination of disabled lives is easier than working toward improving their existence.</p><img src="https://counter.theconversation.com/content/108625/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lidia Ripamonti 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>Disability, autonomy and euthanasia – an uncomfortable debate.Lidia Ripamonti, Research Associate, Von Hügel Institute for Critical Catholic Inquiry, University of CambridgeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/971902018-05-24T13:16:10Z2018-05-24T13:16:10ZWhy the law on assisted dying was unlikely to change in Guernsey<figure><img src="https://images.theconversation.com/files/220277/original/file-20180524-51115-1l9azlk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Lacking political will.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/render-illustration-euthanasia-title-on-legal-333537791?src=xWfj8tECt1W_kDYxvY0QCw-1-17">Shutterstock</a></span></figcaption></figure><p>The <a href="https://www.theguardian.com/society/2018/may/18/guernsey-parliament-votes-against-assisted-dying">recent vote by parliament</a> on the small island of Guernsey, rejecting the legalisation of assisted dying, was not a surprise. If it had passed, Guernsey would have become the first place in the British Isles to offer assisted suicide for people with terminal illnesses.</p>
<p>But politicians in the British Isles – whether in Guernsey, the Isle of Man, or the UK – are unlikely to reform the law on assisted dying anytime soon. </p>
<p>This is not because politicians are unaware of the <a href="http://www.bsa.natcen.ac.uk/">high and consistent public support</a> for reform. Nor is it because they are any more conservative than politicians who did vote for change, like those <a href="https://webarchive.oireachtas.ie/parliament/media/committees/justice/2017/penny-lewis-assisted-dying-regimes-briefing-paper.pdf">in Belgium or in the Netherlands</a>. </p>
<p>The simple reason why any politician chooses to support or reject a change in the law comes down to political realism. It is no accident that for the last 50 years, British political party manifestos have made no mention whatsoever of the words “assisted suicide” or “euthanasia”. </p>
<p>Parliamentary debates on the topic have been exclusively due to <a href="https://www.parliament.uk/about/how/laws/bills/private-members/">Private Members Bills</a> (introduced by MPs who are not government ministers). To put their potential in context, Private Members’ Bills have as much chance – empirically speaking – of becoming an Act of Parliament as England have of winning the FIFA World Cup. Not impossible, just highly improbable. </p>
<p>The indefinite avoidance of legal reform on the issue of assisted dying by party leaders and government committees is a part of a wider strategy. And it is a strategy inspired by a basic type of political game theory. </p>
<p>The Italian scholar <a href="http://euroacademia.eu/speaker/giandomenico-majone/">Giandomenico Majone</a> (an acclaimed political scientist) puts it this way: in order to maximise their chances of reelection, politicians support distributive policies which serve the interests of particular groups of voters, rather than policies that are simply more efficient. </p>
<p>No amount of pro-choice campaigning or media attention demanding the legalisation of assisted dying can mitigate for the complete lack of support for reform from the British Medical Association and the General Medical Council. </p>
<p>So long as these key groups remain formally opposed (or indifferent) to a change in the law, so too will directly elected representatives. </p>
<p>And the situation for those seeking the reform of assisted dying laws in the UK looks bleaker still. The only way politicians will seek legal reform, without support from the leading medical professional bodies, is if the party political system is divided along religious lines. </p>
<h2>A matter of (political) life and death</h2>
<p>In the UK, the party political system is not divided along religious lines, it is divided by class conflict. Compare this to the system in Belgium and the Netherlands, where there are strong Christian Democratic political parties. </p>
<p>As a strategy to gain election, secular parties in opposition supported a number of liberal policies, one of which was the legalisation of assisted dying. This forced the Christian parties to defend positions which were out of line with popular opinion, giving the secular parties an electoral advantage. </p>
<p>Once the secular parties were voted into a coalition government, they then had to stick to their promise and <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(03)14520-5/abstract">pass a law</a> allowing for assisted dying. Essentially, Dutch and Belgian parliamentarians dealt with assisted dying because of political party competition. </p>
<p>In the UK, however, no political party takes a religious stance on any particular moral issue. So there are no obvious election interests to justify putting the issue of assisted dying on the agenda. </p>
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<p>This is political realism. Essentially, we can forget about any change in the law on assisted dying via a parliament in the British Isles unless one of the leading professional medical associations starts to push for change – or a religious political party becomes popular. For this reason, it is hard to agree with the <a href="https://www.theguardian.com/society/2018/may/18/guernsey-parliament-votes-against-assisted-dying">recent assertion</a> made by Guernsey’s chief minister, Gavin St Pier, that we will see an “inevitable change” in the law on assisted dying. </p>
<p>A strong constitutional court like Canada’s would be an alternative route onto the agenda. There, the <a href="https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do">Supreme Court struck down</a> the Canadian criminal ban on assisted dying, forcing the federal government to amend the law. But British courts are not, as a matter of institutional structure, inclined towards judicial activism. So we will have to await the Court of Appeal decision in the recent <a href="https://www.judiciary.gov.uk/wp-content/uploads/2018/01/conway-judgment18.1.18.pdf">Noel Conway case</a>. </p>
<p>Like previous applicants before him (such as <a href="https://www.nytimes.com/2012/08/23/world/europe/tony-nicklinson-who-fought-for-assisted-suicide-is-dead.html">Tony Nicklinson</a>), Mr Conway is seeking a judicial declaration that the ban on assisted suicide is incompatible with his right to private life under the European Convention on Human Rights. If Mr Conway is successful before the Court of Appeal, the government will almost certainly try to have the matter decided in the Supreme Court. </p>
<p>Even if the courts find in Mr Conway’s favour, the criminal ban on assisted suicide will remain in operation. It would, however, require parliament to debate once again whether the law should be reformed.</p><img src="https://counter.theconversation.com/content/97190/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Adam McCann 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>In the UK, euthanasia is ignored by parliamentarians in favour of political survival.Adam McCann, Lecturer in Law, University of ExeterLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/883242017-12-05T19:19:44Z2017-12-05T19:19:44ZFrom Oregon to Belgium to Victoria – the different ways suffering patients are allowed to die<figure><img src="https://images.theconversation.com/files/197532/original/file-20171204-4062-1p2hrsh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Victoria's model is pretty conservative compared to other jurisdictions that have legalised euthanasia or assisted dying.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p>Australia will, from mid-2019, once again join the list of countries that have legalised a person’s right to die if he or she is suffering unbearably. This comes after Victoria became the first state in the country to <a href="http://www.abc.net.au/news/2017-11-29/euthanasia-passes-parliament-in-victoria/9205472">legalise voluntary assisted dying</a> in November 2017 – more than two decades after the federal parliament struck down the Northern Territory’s short-lived <a href="https://en.wikipedia.org/wiki/Rights_of_the_Terminally_Ill_Act_1995">euthanasia act</a>.</p>
<p>The <a href="http://www.legislation.vic.gov.au/domino/Web_Notes/LDMS/PubPDocs.nsf/ee665e366dcb6cb0ca256da400837f6b/d162e1f2fcc3f7c3ca2581a1007a8903!OpenDocument">Victorian bill</a> provides a model for physician-assisted suicide, where a patient can request and receive help to <a href="https://theconversation.com/dying-a-good-death-what-we-need-from-drugs-that-are-meant-to-end-life-85445">source the drugs</a> necessary to bring about their own death. This is different to voluntary euthanasia, which typically requires another person such as a doctor to actively cause the death of the patient at the patient’s request. </p>
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Read more:
<a href="https://theconversation.com/want-to-better-understand-victorias-assisted-dying-laws-these-five-articles-will-help-88310">Want to better understand Victoria's assisted dying laws? These five articles will help</a>
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<p>Under the Victorian model, there is scope for a doctor to administer the drugs if the patient is physically incapable of doing so themselves. To access the scheme, the patient must meet strict criteria. They must have an illness likely to end their life within six months (12 months for neurodegenerative conditions such as motor neuron disease) and be experiencing suffering that can’t be managed in a way tolerable to the patient. They must be over the age of 18 and a resident of Victoria. </p>
<p>Victoria’s model is pretty conservative compared to other jurisdictions. Some broaden eligibility to minors, non-residents and people suffering non-terminal conditions and disabilities. Others include access to both voluntary euthanasia and physician-assisted dying. </p>
<p>Here is a roundup of the laws around the world that permit assisted dying or euthanasia and ways in which they differ.</p>
<h2>Oregon</h2>
<p>Outcomes of the Oregon model have influenced debate in many jurisdictions, including Australia. Oregon passed its <a href="http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/pages/index.aspx">Death with Dignity Act</a> in 1994. Finally taking effect in 1997, it is one of the longest-standing legislative schemes for physician-assisted suicide. </p>
<p>Oregon’s eligibility requirements are similar to those in Victoria. Assisted dying is available to adults over 18 who are capable of making decisions, have a terminal diagnosis with a life expectancy of six months and are Oregon residents.</p>
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Read more:
<a href="https://theconversation.com/the-six-month-amendment-could-defeat-the-purpose-of-victorias-assisted-dying-bill-87941">The six-month amendment could defeat the purpose of Victoria's assisted dying bill</a>
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<p>The initial process for seeking assistance to die is also similar: a series of requests and evaluations over a period of time. Unlike the Victorian bill, though, the Oregon law doesn’t require patients or doctors to seek a licence or permit from the state prior to taking or allowing the medication. But doctors are required to report deaths to the state for evaluation purposes. </p>
<p>As of January 2017, 1,749 people had <a href="http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year19.pdf">received prescriptions under the Oregon law</a> since it came into force in 1997. Around 1,127 patients had died from ingesting the medications provided, 133 of these in 2016. Most participants (70%) were 65 years or older, and most (77.4%) had cancer.</p>
<p>The Oregon law has been remarkably stable. There was an unsuccessful attempt in 2015 to extend the eligibility period from six to 12 months. But the regulatory and eligibility criteria remain unchanged since 2006, when the law’s validity was last challenged in the courts.</p>
<p>Other US states to legalise assisted dying include Washington, Montana, Vermont and California. These are <a href="https://lop.parl.ca/Content/LOP/ResearchPublications/2015-116-e.html?cat=law#a6">based on the Oregon model</a>, but there is <a href="https://www.deathwithdignity.org/learn/access/">minor variation in process between jurisdictions</a>. </p>
<h2>Netherlands, Belgium and Luxembourg</h2>
<p>In the Netherlands, Belgium and Luxembourg, both voluntary assisted dying and euthanasia are legal. There are no specific diagnostic requirements for access to the scheme for adults. The patient only needs to be experiencing unbearable suffering without prospect of a cure. </p>
<p>Patients accessing assisted dying and euthanasia in these jurisdictions have done so not only for terminal conditions but also non-terminal ones too. These include <a href="http://www.worldrtd.net/news/belgium-analysis-euthanasia-cases-dementia-and-psychiatry">dementia</a>, alcohol and drug addiction, mental illness and <a href="http://www.telegraph.co.uk/news/worldnews/europe/belgium/9801251/Euthanasia-twins-had-nothing-to-live-for.html">disability</a>. </p>
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Read more:
<a href="https://theconversation.com/separating-fact-from-fiction-about-euthanasia-in-belgium-58203">Separating fact from fiction about euthanasia in Belgium</a>
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<p>Both Belgium and the Netherlands have reduced or removed age eligibility criteria to include minors. Since 2014, minors of any age who are terminally ill have been able to access assisted dying or euthanasia in Belgium, after a psychiatric assessment. In the Netherlands, children from 12 years can access the laws.</p>
<p>In the <a href="http://statline.cbs.nl/Statweb/publication/?DM=SLEN&PA=81655eng&D1=10&D2=a&D3=a&D4=l&LA=EN&VW=T">Netherlands</a>, 6,672 people died as a result of euthanasia and 150 of assisted suicide in 2015 – or 4.6% of all deaths. This is <a href="https://www.ncbi.nlm.nih.gov/pubmed/27380345">consistent with estimates</a> that assisted suicide or euthanasia accounts for between 0.3% and 4.6% of all deaths in jurisdictions where it is legal. Thus it remains relatively rare.</p>
<h2>Switzerland</h2>
<p>Despite being recognised as the first “euthanasia” jurisdiction, the Swiss system is somewhat of a legal irregularity, as the laws don’t expressly authorise physician-assisted suicide. Rather, while the <a href="https://www.admin.ch/opc/en/classified-compilation/19370083/201709010000/311.0.pdf">Swiss Penal Code 1942</a> makes voluntary euthanasia and assisted suicide an offence in the case of “selfish” motives, it is <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125125/">silent on the status</a> of assisted suicide for “non-selfish” motives. </p>
<p>As the system rests on an omission rather than an express scheme, there are no mandated eligibility requirements relating to age, residency, condition or prognosis. </p>
<p>Since the 1980s, not-for-profit organisations have interpreted this law as permitting them to provide assisted suicide services.</p>
<h2>Canada</h2>
<p>In the 2015 case of <a href="https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do">Carter v Canada</a>, the Canadian Supreme Court ruled that a terminally ill patient has a right to a physician’s assistance in dying under the <a href="http://laws-lois.justice.gc.ca/eng/Const/page-15.html">Canadian Charter of Rights and Freedoms</a>. The case resulted in <a href="http://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/royal-assent">Bill C-14,</a> which excludes from Canadian criminal laws those who provide assistance in dying to Canadian residents over the age of 18, with capacity to make decisions, who are suffering from a “grievous and irremediable” medical condition rendering the end of their life reasonably foreseeable.</p>
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Read more:
<a href="https://theconversation.com/viewpoints-should-euthanasia-be-available-for-people-with-existential-suffering-79564">Viewpoints: should euthanasia be available for people with existential suffering?</a>
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<p>Bill C-14 has been challenged because of the “reasonably foreseeable” requirement. The <a href="https://bccla.org/wp-content/uploads/2016/08/2016-06-27-Notice-of-Civil-Claim.pdf">British Columbia Civil Liberties Association</a> has argued it is more restrictive than the finding of the Canadian Supreme Court in Carter, which required only that the plaintiff be experiencing intolerable suffering. <a href="http://www.cbc.ca/news/canada/british-columbia/assisted-dying-constitutional-challenge-1.4349773">That court challenge is continuing</a>, while the law remains valid.</p>
<p>Quebec, a province of Canada, has also legislated a form of euthanasia. Under <a href="http://legisquebec.gouv.qc.ca/en/showdoc/cs/S-32.0001">Quebecois law</a>, doctors must administer assistance personally and remain with the patient until they die. This imposes a greater burden on doctors than assisted dying models. </p>
<h2>Colombia</h2>
<p>Colombia permits both voluntary euthanasia and physician-assisted suicide to terminally ill adults. The practice is regulated by a set of guidelines published in 2015 by the Colombian Ministry of Health and Social Protection. The guidelines came some 20 years after the <a href="http://www.patientsrightscouncil.org/site/wp-content/uploads/2015/05/Colombia_Court_Decision_05_20_1997.pdf">Constitutional Court ruled</a> no person could be criminally liable for taking the life of a terminally ill patient who had consented.</p>
<p>In common with the Victorian model, the Colombian guidelines require prior external authorisation. However this is obtained from an external review committee in Colombia, rather the Secretary of the Department of Health, as in the case of the Victorian model. </p>
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<p><em>If this article has raised concerns for you or anyone you know, contact <a href="https://www.lifeline.org.au/">Lifeline</a> on 13 11 14, or <a href="https://www.beyondblue.org.au/">beyondblue</a> 1300 224 636.</em></p><img src="https://counter.theconversation.com/content/88324/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Wendy Bonython 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>The Victorian assisted dying laws are based on those in Oregon, which are quite conservative. Laws in the Netherlands, Belgium and Canada are more relaxed.Wendy Bonython, Associate professor, University of CanberraLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/879412017-11-23T01:04:47Z2017-11-23T01:04:47ZThe six-month amendment could defeat the purpose of Victoria’s assisted dying bill<p>Victoria’s historic bill to legalise assisted dying passed the upper house
after a marathon 28-hour sitting on November 22, 2017. The 40 MPs voted with their conscience, and the final count was 22 to 18. </p>
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<p>The bill returns to the lower house for <a href="http://www.abc.net.au/news/2017-11-22/euthanasia-victorian-parliament-passes-assisted-dying-laws/9156016">final ratification of amendments</a>. The original bill specified that the person requesting assistance to die should have no more than 12 months to live. This has been reduced to a much more restrictive six months.</p>
<p>However, people with neurodegenerative conditions, such as motor neuron disease and multiple sclerosis, can apply for assistance to die up to 12 months before their expected death. This follows medical advice that people with these conditions may not be able to give clear requests for assisted dying once they have reached the final stages of their illness.</p>
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Read more:
<a href="https://theconversation.com/four-reasons-victorian-mps-say-no-to-assisted-dying-and-why-theyre-misleading-87168">Four reasons Victorian MPs say 'no' to assisted dying, and why they're misleading</a>
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<p>Both the amendment and the exception give rise to a number of concerns. The first is that it is widely accepted that estimating the time a patient has to live is one of the most difficult core clinical skills. A doctor who gets this prognosis wrong could conceivably deny the patient a peaceful death. This would defeat the entire purpose of the legislation.</p>
<h2>Overestimating time left to live</h2>
<p>The six-month amendment brings the Victorian legislation into line with that in the US state of Oregon, on which the Victorian bill was largely based. But it’s much more restrictive than in Canada, where there is no <a href="https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html">requirement for a specific prognosis</a> as to how long a person has left to live. Canada’s legislation does have other stringent eligibility criteria, such as having a terminal illness in which a natural death has become “reasonably foreseeable”. </p>
<p>A physician would usually be able to predict how long, on average, a patient with a specific disease is likely to live. But given all other aspects of the patient’s condition at the individual level, such prognosis is often inaccurate. A review of studies <a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0161407">exploring predictions</a> of survival in palliative care for patients with a range of illnesses found that doctors’ predictions were “frequently inaccurate”. Estimates ranged from an underestimate of 86 days to an overestimate of 93 days. </p>
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<p><strong><em><a href="https://theconversation.com/how-much-time-have-i-got-doc-the-problems-with-predicting-survival-at-end-of-life-52700">How much time have I got, doc? The problems with predicting survival at end of life</a></em></strong></p>
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<p><a href="https://www.ncbi.nlm.nih.gov/pubmed/12881260">Another review</a> of similar studies concluded that doctors tended to be “overly optimistic”, and that</p>
<blockquote>
<p>…clinicians consistently overestimate survival [which] may affect patients’ prospects for achieving a good death. </p>
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<p>Under the Victorian bill, a patient given an “overly optimistic” prognosis of 12 months to live would not be eligible for assistance to die, but may then die before reaching the six-month threshold. That patient would, meanwhile, have had to meet all the other eligibility criteria, including suffering that cannot be relieved in any way acceptable to the patient.</p>
<p>This may result in patients who would have been eligible, had they received an accurate prognosis, continuing to suffer until they die, thereby depriving them of a good death.</p>
<h2>Neurodegenerative diseases</h2>
<p>The narrow exception to the amendment, from six to 12 months for people with neurodegenerative conditions, is also cause for concern. This amendment was made both because of possible mental deterioration, and because of the extreme difficulty of controlling pain relief for people with neurodegenerative conditions, requiring high doses of medication that could potentially render the person unconscious.</p>
<p>However, neurodegenerative diseases are not the only ones where great distress towards the end of life may make it difficult to give clear requests for assisted dying. Patients suffering from conditions such as congestive cardiac failure, chronic obstructive pulmonary disease and chronic renal (kidney) failure can be given such strong medication at the end of life, which may render them incapable of clear decision-making.</p>
<p>My <a href="https://espace.library.uq.edu.au/view/UQ:261477">2004 research</a> explored factors that affect requests for euthanasia in older people with terminal illness. Of 43 people who had died in the previous 12 months, six had asked for help in ending their lives. None of them had cancer, but five had chronic obstructive pulmonary disease and found their suffering intolerable.</p>
<p>The current narrow amendment would not offer these patients the same extended time frame and could thus be considered to be discriminatory.</p>
<h2>Defeating the purpose</h2>
<p>Victoria’s lower house passed the Assisted Dying Bill on 20 October 2017, by 47-37. It is expected to take effect in 2019, to allow time for discussion and resolution of all implementation issues, including what drugs can be used to assist a person to die.</p>
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<em>
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Read more:
<a href="https://theconversation.com/dying-a-good-death-what-we-need-from-drugs-that-are-meant-to-end-life-85445">Dying a good death: what we need from drugs that are meant to end life</a>
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<p>The bill was the result of extensive and meticulous work by two Victorian government committees, consisting of many prominent Victorians, including those with experience in palliative care, medicine, nursing and the law. </p>
<p>Compared with other jurisdictions that allow assisted dying, the Victorian Bill is extremely conservative in relation to the eligibility criteria and the processes that must be followed. It also contains 68 safeguards and harsh penalties for breaches of the proposed legislation. Further restrictions are unnecessary and stand to jeopardise the very purposes of the legislation.</p><img src="https://counter.theconversation.com/content/87941/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Colleen Cartwright received funding from the National Health and Medical Council grants program of the Australian government </span></em></p>Doctors often overestimate the time a patient has left to live. In the case of Victoria’s assisted dying bill, an optimistic prediction could deny the patient the peaceful death they deserve.Colleen Cartwright, Emeritus professor, Southern Cross UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/857442017-10-17T19:13:46Z2017-10-17T19:13:46ZSex versus death: why marriage equality provokes more heated debate than assisted dying<figure><img src="https://images.theconversation.com/files/190509/original/file-20171016-22280-wa2p98.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">While fear suppresses talk about dying, marriage equality involves sex.</span> <span class="attribution"><span class="source">AAP/Danny Casey</span></span></figcaption></figure><p>The Greek philosopher Epicurus wrote:</p>
<blockquote>
<p>Death does not concern us, because as long as we exist, death is not here. And when it does come, we no longer exist. </p>
</blockquote>
<p>We are in the midst of two great ethical debates: marriage equality and assisted dying. The results of the marriage equality postal survey will be announced on November 15; meanwhile, the Victorian parliament is this week debating a <a href="https://www2.health.vic.gov.au/about/health-strategies/voluntary-assisted-dying-bill">new law</a> to allow doctor-assisted dying in the last year of life.</p>
<p>What is striking is the volume of the respective public debates. Everyone is talking about marriage equality; very few are discussing assisted dying. </p>
<p>Given that the ethics of assisted dying are more complex than marriage equality, and what happens in Victoria is likely to provide a template for other states, why is it receiving so much less attention?</p>
<h2>How fear of death affects public debate</h2>
<p>Public ethical debates are fuelled by emotion and psychological biases on both sides. In the case of assisted dying, most of us are not like Epicurus: we fear death. We <a href="http://www.tandfonline.com/doi/pdf/10.1080/07481180490476489?needAccess=true">hate talking about it</a>.</p>
<p>Despite the fact that polls show that 73% of Australians favour assisted dying, it is not clear whether the legislation will pass, although the mood <a href="http://www.heraldsun.com.au/news/victoria/deputy-premier-james-merlino-to-seek-to-halt-assisted-death-push/news-story/2e2cff2f10c1e0a75e3df9392e6daa41">seems to be leaning</a> slightly in favour: 40 out of 87 MPs in the Legislative Assembly told the Herald Sun they would vote yes.</p>
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<p><strong><em>Further reading: <a href="https://theconversation.com/as-victorian-mps-debate-assisted-dying-it-is-vital-they-examine-the-evidence-not-just-the-rhetoric-84195">As Victorian MPs debate assisted dying, it is vital they examine the evidence, not just the rhetoric</a></em></strong></p>
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<p>So, there should be an enormous impetus to show MPs the level of public support. But it has been rather muted. Perhaps for similar reasons we post photos of weddings on Facebook, but not funerals: both are important, but only one makes good dinner party conversation. </p>
<h2>Terror management theory, evolution and social signalling</h2>
<p>Our fear of death <a href="https://www.headspace.com/blog/2016/03/24/why-dont-we-talk-about-death/">might even be linked</a> to our love of marriage, according to terror management theory (TMT). Neuroscientist Claudia Aguirre writes: </p>
<blockquote>
<p>When we’re faced with the idea of death, people defensively turn to things they believe will shield them from death, literal or otherwise. Thinking about death also motivates people to indiscriminately uphold and defend their cultural world views, whatever those may be.</p>
</blockquote>
<p>TMT has <a href="http://journals.sagepub.com/doi/10.1207/S15327957PSPR0403_1">been linked</a> to our development of regulation and rituals around sex. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/190515/original/file-20171016-22255-1o8x6g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/190515/original/file-20171016-22255-1o8x6g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/190515/original/file-20171016-22255-1o8x6g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/190515/original/file-20171016-22255-1o8x6g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/190515/original/file-20171016-22255-1o8x6g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/190515/original/file-20171016-22255-1o8x6g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/190515/original/file-20171016-22255-1o8x6g.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">In evolutionary terms, sex is more important than death, which is one of the reasons marriage equality provokes such heated debate.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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</figure>
<p>So, a fundamental commitment to marriage being between a man and a woman may be more of an immovable foundation on which group membership is based to guard against our shared fear of death than an ethical position that can be defended or rebutted on rational grounds. </p>
<p>While fear suppresses talk about dying, marriage equality involves sex. People are intensely interested in love and sex. And sex has been more important than death in evolutionary terms.</p>
<p>As evolved animals, we were only here to survive long enough to reproduce. Reproduction is evolution’s goal, and so practices around its rituals and norms are hugely important in evolutionary and religious terms.</p>
<p>Religions and societies seek to control reproduction. In the Judeo-Christian tradition, sex was to occur within marriage between one man and one woman. Death at an old age is of much less evolutionary significance.</p>
<hr>
<p><strong><em>Further reading: <a href="https://theconversation.com/to-christians-arguing-no-on-marriage-equality-the-bible-is-not-decisive-82498">To Christians arguing ‘no’ on marriage equality: the Bible is not decisive</a></em></strong></p>
<hr>
<p>We are social animals, motivated to support our in-group and reject out-group members. Tribalism can help explain our devotion to football teams, for example. We have developed social signalling to show our group which side we are on and maintain trust.</p>
<p>Add to that a status quo bias, and public debates where the topic in question is seen to express something foundational about ourselves can become little more than cheering for our own team. </p>
<h2>Anchoring</h2>
<p>Anchoring is a psychological bias that means we evaluate how good or bad something is relative to the anchor of existing examples. </p>
<p>In the UK, the 2013 same-sex marriage legislation was fairly uncontroversial. One reason could be that civil partnerships – same-sex marriage in all but name – were created back in 2004. Each step in the UK’s progress towards marriage equality was a short step from the previous state of being. </p>
<p>In contrast, the Australian campaign against same-sex marriage portrays the choice as a paradigm shift in our culture, extending far beyond marriage. Former prime minister Tony Abbott <a href="https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwjF7qqr5_bWAhVMkpQKHYLnBbUQFggmMAA&url=http%3A%2F%2Fwww.theaustralian.com.au%2Fnational-affairs%2Ftony-abbott-hits-back-at-george-brandis-on-samesex-marriage%2Fnews-story%2F3f98f087750759dafb5fca6c78a5e873&usg=AOvVaw1BF3uzCfJyrw866_Y5PgMs">linked the debate</a> to political correctness, gender fluidity and even the date of Australia Day, saying:</p>
<blockquote>
<p>This isn’t just about marriage … there are lots and lots of implications here and we’ve got to think them through before we take this big leap into … the dark.</p>
</blockquote>
<h2>A better approach</h2>
<p>For assisted dying to be an appropriate activity for medicine, we should show that death can be an appropriate therapeutic end and in a patient’s best interests. That is, that their life is no longer worth living. </p>
<p>That is an extremely difficult case to prove, and I haven’t seen any good arguments for how to evaluate that. Why wouldn’t we just go on what a competent person says? If a suffering person believes they’re better off dead, they’re probably right.</p>
<p>But here is another way to think about it. The Victorian legislation will provide assistance only to those in the last year of life from a physical illness. They are effectively in the process of dying.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/190511/original/file-20171016-22285-1vghao.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/190511/original/file-20171016-22285-1vghao.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=197&fit=crop&dpr=1 600w, https://images.theconversation.com/files/190511/original/file-20171016-22285-1vghao.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=197&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/190511/original/file-20171016-22285-1vghao.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=197&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/190511/original/file-20171016-22285-1vghao.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=248&fit=crop&dpr=1 754w, https://images.theconversation.com/files/190511/original/file-20171016-22285-1vghao.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=248&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/190511/original/file-20171016-22285-1vghao.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=248&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">While palliative care may be able to control pain and suffering, it cannot do everything.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>One major objection to the assisted dying bill is that we don’t need it because good palliative care is sufficient. Relief of suffering is very important, and more should be spent on end-of-life planning and palliative care.</p>
<p>But this objection is complicated for several reasons. If palliative care is outstanding, people won’t request assistance in dying. So there is no need to ban it.</p>
<p>More importantly, while palliative care may be able to control pain and suffering, it cannot do everything.</p>
<p>Together with colleagues at Barwon Health and Oxford University, <a href="http://spcare.bmj.com/content/early/2017/08/08/bmjspcare-2016-001177">we surveyed</a> 382 people from the general population and 100 attendees at an advance care planning clinic, where people think about and express their values relating to end-of-life care. We didn’t ask them about assisted dying, but we did ask them to rank four factors at the end of life: pain relief, dignity, independence and living as long as possible.</p>
<p>The highest proportion of both groups ranked the relief of pain and suffering as the most important value, followed by maintaining dignity and remaining independent. </p>
<p>Living as long as possible was ranked as most important by the lowest proportion of participants – only 4% of palliative care patients and 2.6% of the general population (30–35% regarded this as either not important or not very important).</p>
<p>People care not only about pain relief, but also about dignity and independence at the end of life. These are much more subjective and less amenable to control by palliative care. So while palliative care can address part of what people care about, it may not be able to address all their values.</p>
<p>Moreover, people can already shorten their lives by more than a year for any medical condition, or no medical condition at all, by refusing to eat and drink by mouth. It takes around ten days to die of thirst. Such people could be given palliative care to relieve their suffering during this <a href="http://eprints.qut.edu.au/79897/">period of suicide</a>. </p>
<p>But surely the Victorian law offers a better way to die? As with the palliative care, this kind of death does not provide the dignified death, or the independence, that people value.</p>
<p>As distressing as public debate on heartfelt, emotive issues like assisted dying and marriage equality can be, it is an important collective exercise. Like many other people, I thought the marriage equality survey was a waste of money. But on reflection, this idea maybe misplaced. When the views of one part of the community are deemed politically incorrect and suppressed, they foment, then erupt in a Brexit or a Trump.</p>
<p>Debate is vitally important to democracy. What we should hope is that people engage in these debates with their heads, not their hearts. It will take considerable effort on both sides to overcome the psychological obstacles to finding the most fair and reasonable policy.</p>
<p>As Epicurus also said: </p>
<blockquote>
<p>The art of living well and the art of dying well are one.</p>
</blockquote><img src="https://counter.theconversation.com/content/85744/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julian Savulescu 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>The assisted dying bill in Victoria – complex and significant – is engendering less heated debate than marriage equality although both tap into some of our most fundamental fears and motivations.Julian Savulescu, Uehiro Chair in Practical Ethics, Visiting Professor in Biomedical Ethics, Murdoch Childrens Research Institute and Distinguished Visiting Professor in Law, Melbourne University, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/836312017-10-10T22:47:07Z2017-10-10T22:47:07ZWho will be the doctors of death in a time of assisted suicide?<figure><img src="https://images.theconversation.com/files/189070/original/file-20171005-6575-iqsezw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Medical assistance in dying has been legal in Canada since July 2016, but there are no 'specialists' responsible for doctor-assisted suicide and many doctors are overwhelmed with requests. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Medical assistance in dying (MAID) became a reality in Canada when <a href="http://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/royal-assent">legislation was passed</a> in July 2016. This is the hastening of death through a lethal dose of medication — either by self-ingestion (assisted suicide) or physician injection (euthanasia). </p>
<p><a href="http://www.cbc.ca/news/politics/medical-assistance-death-figures-1.4344267">More than 2,000 Canadians</a> have received MAID, administered by a number of physicians. Few of those doctors are palliative care specialists, who are purposely <a href="http://www.cspcp.ca/wp-content/uploads/2015/10/CSPCP-Key-Messages-FINAL.pdf">keeping their distance from MAID</a> to avoid further stigmatization as the physicians of death. They do not want to be associated with treatment failure, or viewed as only providing care to those who have either <a href="http://nationalpost.com/health/when-to-give-up-treatment-or-comfort-for-late-stage-cancer">given up</a> or been deemed hopeless. </p>
<p>This has left MAID without leadership or co-ordination, leading to unequal access and confusion among the public and health-care providers.</p>
<p>I am a palliative care physician at Queen’s University who teaches medical students, residents and other health-care providers. I am adjusting to the new reality of palliative care in the MAID era. Many patients and families ask me about it and a fair number receive it. One patient asked me to be there for his MAID death. </p>
<p>I speak to nursing and physician groups and at <a href="http://www.queensu.ca/eventscalendar/calendar/events/barry-smith-symposium-end-life-care-death-and-dying">public events</a> where I can be simultaneously applauded and criticized for not providing doctor-assisted suicide as part of my palliative care. At these events, there is always uncertainty about MAID: the ethics, legalities, practicalities (how, where, by whom). And there are questions about the comfort of health-care providers with an intervention aiming to administer death rather than stave it off.</p>
<h2>Doctors who improve quality of life</h2>
<p>To understand why palliative care does not wish to “own” MAID requires an understanding of the <a href="http://www.who.int/cancer/palliative/definition/en/">meaning of palliative care</a>. </p>
<p>Palliative care is an approach that improves the quality of life of patients and their families facing a life-threatening illness by preventing and relieving suffering through treatment of pain and other problems — physical, psychosocial and spiritual. It is often provided alongside disease-focused treatments like chemotherapy, radiation or surgery.</p>
<p>Traditionally, palliative care has mostly provided care to <a href="http://www.cancer.ca/en/about-us/for-media/media-releases/national/2016/palliative-care-report-2016/?region=on">patients with cancer</a>, but it is appropriate for anybody with advanced diseases of organs like the <a href="https://www.heartandstroke.ca/heart/conditions/heart-failure">heart</a>, <a href="https://www.lung.ca/copd">lung</a>, <a href="https://www.kidney.ca/kidney-disease">kidneys</a> and <a href="https://www.liver.ca/patients-caregivers/liver-diseases/cirrhosis/">liver</a>. And for those with nervous system disorders like <a href="https://www.als.ca/about-als/">ALS</a> or <a href="http://www.alzheimer.ca/en/About-dementia">dementia</a>. Palliative care is also <a href="http://www.sickkids.ca/patient-family-resources/paediatric-advance-care-team/index.html">provided to children</a> with the above illnesses and also those with congenital disorders.</p>
<p>Research shows that palliative care can <a href="https://doi.org/10.1191/026921698676226729">improve symptom control</a>, <a href="https://dx.doi.org/10.1001/jama.2009.1198">quality of life</a> and, in some cases, <a href="https://dx.doi.org/10.1056/NEJMOa1000678">lead to improved survival</a>. But palliative care is still often seen as the care provided “when nothing else can be done” and when <a href="https://dx.doi.org/10.1503/cmaj.151171">someone is close to death</a>. </p>
<p>This causes problems where patients don’t want to see palliative care “too early” and their doctors are reluctant to refer for <a href="https://dx.doi.org/10.1002/cncr.24206">similar reasons</a>. This shrinks the time in which doctors can help with symptoms and care plans for the future. A large cancer centre in the U.S. noted this problem and changed the name of their “palliative care” team to “supportive care.” </p>
<p>There was an immediate <a href="https://dx.doi.org/10.1634%2Ftheoncologist.2010-0161">41 per cent increase in referrals</a> and those referrals came earlier due to less stigma around the name.</p>
<h2>Reducing suffering, not stopping life</h2>
<p>Admittedly, palliative care and MAID are both trying to treat suffering, but the methods are different: palliative care does not try to speed up (or slow down) death whereas MAID expressly speeds up death. Palliative care tries to reduce suffering by treating physical, psychosocial and spiritual distress whereas MAID stops suffering by stopping life. </p>
<p>Before MAID was legalized, patients whose suffering couldn’t be fixed by other means would get palliative sedation to reduce their awareness and suffering until they died.</p>
<p>While most palliative care doctors don’t provide MAID, we’re not all opposed to its legalization. I support a person’s choice to hasten their death if they have “grievous and irremediable” suffering, which is the terminology used in the <a href="http://www.cbc.ca/news/politics/supreme-court-says-yes-to-doctor-assisted-suicide-in-specific-cases-1.2947487">Supreme Court decision</a>. There are some patients that, despite our best interventions, still suffer a bad death. Many more patients never get the “best” intervention as they <a href="https://beta.theglobeandmail.com/news/national/canadians-lack-proper-access-to-palliative-care-study-finds/article28122378/">can’t access expert palliative care</a> where they live or the system is too overburdened to provide care.</p>
<h2>Who will be the doctors of death?</h2>
<p>So who should have responsibility for MAID? There are no “specialists” that reliably provide MAID, and many doctors struggle to manage the requests of patients. The few doctors who provide it are generally doing it on top of their regular work, risking burnout. </p>
<p>A new group — the <a href="http://camapcanada.ca/">Canadian Association of MAID Assessors and Providers</a> — provides peer support and clinical guidelines. They are also trying to keep up with a legal landscape that is <a href="https://beta.theglobeandmail.com/news/national/ontario-judge-rules-woman-fits-criteria-for-medically-assisted-death/article35375467/">changing frequently</a>, especially around the <a href="http://www.cbc.ca/news/canada/british-columbia/assisted-dying-law-canada-moro-1.4294809">“reasonably forseeable” death</a> clause which was included in the legislation but has not been defined and thus is subject to varying interpretation.</p>
<p>They are also expecting legal challenges regarding “<a href="http://www.cbc.ca/news/politics/doctor-assisted-death-minors-1.3466769">mature minors</a>” and patients with advanced directives who are not able to request MAID, such as those with advanced dementia. Currently only adults who are mentally competent to consent at the time of the MAID procedure are eligible to receive it. Nobody can ask for MAID in a living will or have their loved ones request it on their behalf.</p>
<p>In the end, palliative care doctors, providers of MAID and the public all have the same goal: to alleviate suffering, to maximize quality of life and to respect autonomy for those suffering from life-limiting illnesses. </p>
<p>Almost everyone agrees that palliative care needs to be strengthened in Canada with more education, capacity and funding. Better palliative care will mean less suffering for patients. For those who request MAID due to their suffering, they should be able to access it in an equitable, respectful and expedient way. </p>
<p>End-of-life care remains an uncomfortable but critically important topic and is really the responsibility of everyone.</p><img src="https://counter.theconversation.com/content/83631/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Craig Goldie 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>More than 2,000 Canadians have chosen medical assistance in dying (MAID) since legalization in 2016. But palliative care doctors aren’t embracing assisted suicide as part of their job.Craig Goldie, Assistant Professor, Palliative Physician, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/816712017-07-31T19:55:05Z2017-07-31T19:55:05ZVoluntary assisted dying is not a black-and-white issue for Christians – they can, in good faith, support it<figure><img src="https://images.theconversation.com/files/180312/original/file-20170731-19115-1fgemxe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Religious opponents of assisted dying laws most often appeal to the sanctity of human life.</span> <span class="attribution"><span class="source">shutterstock</span></span></figcaption></figure><blockquote>
<p>Father, into your hands I commend my spirit. </p>
</blockquote>
<p>According to at least one <a href="https://www.biblegateway.com/passage/?search=Luke%2023:45-47&version=NRSV">early and authoritative account</a>, these were Jesus’s dying words. They are words that invite a question: what does it mean to commend a human life – indeed, one’s own life – to God? </p>
<p>As the Victorian parliament prepares to <a href="https://theconversation.com/victoria-may-soon-have-assisted-dying-laws-for-terminally-ill-patients-81401">debate legalising</a> voluntary assisted dying, Christians, like many others in the community, are having to wrestle with their own responses to this issue. While <a href="https://www.catholic.org.au/commission-documents/bishops-commission-for-health-community-service-1/535-euthanasia-a-pastoral-letter-1/file">some</a> <a href="http://socialissues.org.au/euthanasia/anglican_church/">parts</a> of the church have clearly and consistently voiced opposition, there are <a href="http://christiansforve.org.au">some</a> <a href="https://theconversation.com/factcheck-qanda-do-80-of-australians-and-up-to-70-of-catholics-and-anglicans-support-euthanasia-laws-76079">exceptions</a>. </p>
<p>Christians can, <a href="http://journals.sagepub.com/doi/full/10.1177/1030570X17711957">in good faith and for good theological reasons</a>, land on either side of this debate. And while the Christian community has no right to monopolise the conversation, its long tradition of compassionate care for both the dying and the dead means it brings some wisdom and experience to this issue.</p>
<hr>
<p><em><strong>Further reading: <a href="https://theconversation.com/victoria-may-soon-have-assisted-dying-laws-for-terminally-ill-patients-81401">Victoria may soon have assisted dying laws for terminally ill patients</a></strong></em></p>
<hr>
<h2>Why the opposition?</h2>
<p>Religious opposition to assisted dying laws most often appeals to the sanctity of human life. This is the radical and sometimes counter-cultural affirmation that all human life, regardless of circumstance, is precious to and has dignity before God. </p>
<p>Such a conviction challenges the notion of privileged status for the rich or strong, and demands equity for the poor, disabled, sick, vulnerable and imprisoned. The law of the land both reflects and forms the ethos of a society. So, any change in legislation will inevitably and in subtle ways influence our attitude, for example, to the aged, the weak, and the fragile. </p>
<p>Many Christian traditions also believe God has given the state a vocation to protect the lives of all its citizens, and especially those of the most vulnerable among us. </p>
<p>And while few – if any – would express confidence that a state’s laws, however carefully constructed and policed, can handle the complexity of such a matter as voluntary assisted dying, that Australia does not (yet) have a bill of rights makes religious support for state-sponsored voluntary assisted dying even more precarious. </p>
<p>If this bill were to pass through Victoria’s parliament, even with all of the highest possible protections for vulnerable people against abuse or coercion, it still risks both communicating and promoting the mood that the sick and dying are an inconvenient burden on our community.</p>
<p>For such reasons, many people of faith, and of none, prefer the present messiness, even if it leaves those whose pain is unmanageable or who’d prefer to die at home under-served.</p>
<h2>Life is not its own end</h2>
<p>While affirming that human life is always sacred, the Christian tradition does not, however, make life its own end. To do so would be to make of life an idol. </p>
<p>Christians, therefore, have rarely argued that life ought to be preserved always and at any cost. For more than 2,000 years Christians have occasionally chosen to give up their lives for some other end. Martyrdom is one such example. Its power lies precisely in the dichotomy that life is precious but is being voluntarily given up for another purpose. </p>
<p>Dietrich Bonhoeffer, a German pastor and theologian who opposed the Nazis’ death-championing policies, <a href="http://journals.sagepub.com/doi/full/10.1177/1030570X17711957">argued that</a> one might legitimately choose to give up one’s life as an act of love for the other, and that choosing to do so might be an expression of our God-given freedom and responsibility.</p>
<p>Here we encounter the notion of responsibility and freedom in Christian thought. These notions apply as much to human dying as to living. </p>
<p>Making careful and faithful choices about dying is not necessarily “playing God” in a negative sense, but may be an expression of one’s risking to take seriously the freedom and responsibility given to human persons by God.</p>
<p>The decision to turn off a life-support machine, for example, or to refuse treatment, or to increase pain medication knowing it may hasten death, or to otherwise end one’s life, or to refuse medical intervention entirely and endure pain until the end time comes and pain is no more, may in each case represent a person’s faithful freedom and responsibility before God.</p>
<p>The first and final word of the Christian community, however, is not about the human’s faithful freedom and responsibility. Rather, it is about God, and about the way God, in Jesus Christ, has freely and lovingly undertaken ultimate responsibility for every human life. </p>
<p>Christian belief is that the grave – and indeed the ambiguity of life often met near the grave’s entrance – is not unfamiliar territory to God either. In life and in death, we belong to God.</p><img src="https://counter.theconversation.com/content/81671/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors 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>Christianity’s long tradition of compassionate care for both the dying and the dead means it brings some wisdom and experience to the voluntary assisted dying issue.Robyn J. Whitaker, Bromby Lecturer in Biblical Studies, Trinity College; Lecturer, University of DivinityJason Goroncy, Senior Lecturer in Systematic Theology, Whitley College, University of DivinityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/760792017-05-01T07:46:26Z2017-05-01T07:46:26ZFactCheck Q&A: do 80% of Australians and up to 70% of Catholics and Anglicans support euthanasia laws?<figure><img src="https://images.theconversation.com/files/164777/original/image-20170411-31879-xfdeki.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Author Nikki Gemmell speaking on Q&A. </span> <span class="attribution"><span class="source">ABC Q&A</span></span></figcaption></figure><p><strong>The Conversation fact-checks claims made on Q&A, broadcast Mondays on the ABC at 9:35pm. Thank you to everyone who sent us quotes for checking via <a href="http://www.twitter.com/conversationEDU">Twitter</a> using hashtags #FactCheck and #QandA, on <a href="http://www.facebook.com/conversationEDU">Facebook</a> or by <a href="mailto:checkit@theconversation.edu.au">email</a>.</strong></p>
<hr>
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<figcaption><span class="caption">Excerpt from Q&A, April 10, 2017. Quote begins at 5.30.</span></figcaption>
</figure>
<blockquote>
<p>I’m speaking for 80% of the Australian population here who support the euthanasia laws and in terms of Catholics and Anglicans, I’m speaking for up to 70% of them as well. <strong>– Author Nikki Gemmell, speaking on Q&A, April 10, 2017.</strong></p>
</blockquote>
<p>The Victorian government is expected to introduce a bill in the second half of this year to legalise euthanasia. If passed, the laws would be the first in Australia to legalise assisted dying since the Northern Territory’s euthanasia laws were overturned in 1997. </p>
<p>During a discussion on Q&A, author Nikki Gemmell – who has been arguing to <a href="http://www.theaustralian.com.au/life/weekend-australian-magazine/by-her-own-hand/news-story/d8f599d6056b795c7756c41721fa9420?nk=5ccf14ef1fcd83b6bfe4a2862a38a2fe-1493271471">legalise euthanasia</a> since sharing the story of her mother’s <a href="http://www.abc.net.au/news/2017-03-20/nikki-gemmell-explores-euthanasia-debate-after-mothers-death/8347548">“horrifically lonely”</a> death – said 80% of Australians and up to 70% of Catholics and Anglicans support euthanasia laws.</p>
<p>Is that right?</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"851406250231218176"}"></div></p>
<p><em>(Thanks to all the Q&A viewers who requested this FactCheck: see more viewer tweets at the end of this article.)</em></p>
<h2>Checking the source</h2>
<p>When asked for sources to support her statement about Australians’ support for euthanasia laws, Gemmell supplied The Conversation with a table listing 10 polls conducted in Australia on the topic of euthanasia between 2007 and 2016. </p>
<p>The table shows support for euthanasia ranging between 66% and 85% over the years from 2007-16. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/166224/original/file-20170421-12658-1twswrk.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/166224/original/file-20170421-12658-1twswrk.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/166224/original/file-20170421-12658-1twswrk.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=383&fit=crop&dpr=1 600w, https://images.theconversation.com/files/166224/original/file-20170421-12658-1twswrk.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=383&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/166224/original/file-20170421-12658-1twswrk.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=383&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/166224/original/file-20170421-12658-1twswrk.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=481&fit=crop&dpr=1 754w, https://images.theconversation.com/files/166224/original/file-20170421-12658-1twswrk.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=481&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/166224/original/file-20170421-12658-1twswrk.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=481&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Opinion poll results, Australia.</span>
<span class="attribution"><span class="source">Table provided by Nikki Gemmell.</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>The Conversation has independently verified each of these polls.</p>
<p>As for her statement that up to 70% of Catholics and Anglicans support euthanasia laws, Gemmell pointed The Conversation to a <a href="http://christiansforve.org.au/public-opinion/">website</a> run by Christians Supporting Choice for Voluntary Euthanasia.</p>
<p>The website refers to a <a href="https://cdn.theconversation.com/static_files/files/4/76079-2017-04-24-polling-Dying_With_Dignity_Summary_Report_V2.pdf?1518043685">2007 Newspoll survey</a> of more than 2,400 people commissioned by <a href="https://www.dwdv.org.au/">Dying with Dignity Victoria</a>, which found 74% of Catholic/Roman Catholic respondents and 81% of Anglican/Church of England respondents surveyed thought doctors should be allowed to provide “a lethal dose to a patient experiencing unrelievable suffering and with no hope of recovery”.</p>
<p>Gemmell also provided a link to <a href="http://www.dwdnsw.org.au/documents/2013/POLL%20WHITE%20PAPER%202012.pdf">a document</a> published by <a href="http://www.yourlastright.com/">YourLastRight.com</a>, a group of seven not-for-profit pro-euthanasia societies across Australia.</p>
<p>The document refers to a <a href="https://cdn.theconversation.com/static_files/files/6/76079-2017-04-24-polling-121104_Dying_with_Dignity_Report_Revised.pdf?1518043821">2012 Newspoll survey</a> of more than 2,500 people, commissioned by YourLastRight.com. That poll asked the question:</p>
<blockquote>
<p>Thinking now about voluntary euthanasia. If a hopelessly ill patient, experiencing unrelievable suffering, with absolutely no chance of recovering asks for a lethal dose, should a doctor be allowed to provide a lethal dose, or not? </p>
</blockquote>
<p>In that poll, 77% of Catholic/Roman Catholic and 88% of Anglican/Church of England respondents said yes. </p>
<h2>A critical look at the polls</h2>
<p>The first thing to remember is that not all polls are created equal. Random sample, population-based studies, conducted in a way that maximises the opportunity to participate (such as postal surveys), with well-designed questionnaires, non-leading questions and rigorous data analysis are the “gold standard” for surveys of public opinions and beliefs. </p>
<p>A closer examination of the polls is warranted – so let’s look in more detail at the some of the key surveys Gemmell cites, including from The Australia Institute, ABC Vote Compass, Newspoll and others.</p>
<h2>Surveys that ask about people with “unrelievable suffering”</h2>
<p>First, let’s look at the Australia Institute and Newspoll results. These surveys asked whether respondents supported voluntary euthanasia for people experiencing “unrelievable suffering”, often in the context of a terminal illness. But it’s important to note that “unrelievable suffering” is only <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265314/">one of the reasons</a> people request assistance to die.</p>
<p>In <a href="http://www.tai.org.au/node/1914">2012 the Australia Institute</a> commissioned a survey (1,422 respondents) and reported that 71% supported:</p>
<blockquote>
<p>the legalisation of voluntary euthanasia for people experiencing unrelievable and incurable physical and/or mental suffering.</p>
</blockquote>
<p>In a <a href="http://www.tai.org.au/sites/defualt/files/MR%20Survey%20results%20attitudes%20to%20voluntary%20euthanasia_8.pdf">2010 survey</a> (1,294 respondents), the Australia Institute asked: </p>
<blockquote>
<p>This question is about voluntary euthanasia. If someone with a terminal illness who is experiencing unrelievable suffering asks to die, should a doctor be allowed to assist them to die?</p>
</blockquote>
<p>75% of respondents said “yes, voluntary euthanasia should be legal”. Of the respondents who identified as Christians, 65% said voluntary euthanasia should be legal.</p>
<p>The quality of the Australia Institute research was generally acceptable. To ensure that the survey was representative of the Australian population, sampling quotas were applied by age, gender and territory, and data were post-weighted based on the profile of the adult Australian population. </p>
<p>However, I note some limitations with the 2010 Australia Institute poll: </p>
<p>a) This was an online survey, which would have excluded many older people and potentially people from lower socio-economic backgrounds who may have had limited access to computers, as well as some Aboriginal and Torres Strait Islander people. </p>
<p>In a series of <a href="http://epubs.scu.edu.au/aslarc_pubs/17/">stratified, population-based postal surveys</a> my colleagues and I conducted in Queensland and <a href="https://espace.library.uq.edu.au/view/UQ:153431">the Northern Territory</a> between 1995 and 2002, participants were asked about their level of support for “terminally ill people who decide they no longer wish to live”. In those studies, 65%-75% of respondents said euthanasia should be legally available, but those aged 75 and over were the <em>least</em> likely to agree with this.</p>
<p>There was also <a href="http://www.aph.gov.au/binaries/senate/committee/legcon_ctte/completed_inquiries/1996-99/euthanasia/report/report.pdf">concern</a> among Aboriginal and Torres Strait Islander people in the Northern Territory about the <a href="http://www.nt.gov.au/lant/parliamentary-business/committees/rotti/rotti95.pdf">introduction in 1995 of laws legalising euthanasia</a> (<a href="http://www.nt.gov.au/lant/parliamentary-business/committees/rotti/parldebate.shtml">overturned in 1997</a>). Had there been more participation among older people and Aboriginal and Torres Strait Islander people in the Australia Institute poll, the results may have shown less acceptance of voluntary euthanasia.</p>
<p>(b) The question itself was problematic. As mentioned earlier, “unrelievable suffering” is not the only reason people request assistance to die. The main reasons for requests for assistance to die include <a href="https://www.ncbi.nlm.nih.gov/pubmed/27380345">loss of control</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265314/">dignity and independence</a>; and having “had enough” or being “ready to go” – not just “unrelievable suffering”.</p>
<p>If someone is experiencing unrelievable suffering, there should be a thorough investigation of their pain and symptom management, and other causes of distress, with the option of terminal sedation for unmanageable suffering.</p>
<p>Then there are Newspoll’s findings from <a href="https://cdn.theconversation.com/static_files/files/4/76079-2017-04-24-polling-Dying_With_Dignity_Summary_Report_V2.pdf?1518043685">2007</a>, <a href="https://cdn.theconversation.com/static_files/files/5/76079-2017-04-24-polling-091005_Euthanasia_Study.pdf?1518043791">2009</a> and <a href="https://cdn.theconversation.com/static_files/files/6/76079-2017-04-24-polling-121104_Dying_with_Dignity_Report_Revised.pdf?1518043821">2012</a>, from surveys commissioned by Dying With Dignity Victoria, Dying with Dignity NSW and YourLastRight.com respectively. </p>
<p>In those surveys, 80-85% of respondents answered yes to the question:</p>
<blockquote>
<p>Thinking now about voluntary euthanasia. If a hopelessly ill patient, experiencing unrelievable suffering, with absolutely no chance of recovering asks for a lethal dose, should a doctor be allowed to provide a lethal dose, or not? </p>
</blockquote>
<p>Again, that is very leading question, which limits its credibility.</p>
<h2>Surveys with less leading questions</h2>
<p>Since 2013, the Australian Broadcasting Corporation (ABC) has run national and statewide surveys using an online tool called <a href="https://votecompass.abc.net.au/">Vote Compass</a>, developed by <a href="http://voxpoplabs.com/">data scientists from Canada</a> in collaboration with political scientists from the <a href="http://electionwatch.unimelb.edu.au/australia-2016/articles/votecompass">University of Melbourne</a>. It allows voters to respond to political and social issues on an opt-in basis.</p>
<p>The <a href="http://www.abc.net.au/news/2016-05-25/vote-compass-euthanasia/7441176">2016 Vote Compass survey</a> (201,404 respondents) found 75% of respondents strongly agreed or somewhat agreed with the statement:</p>
<blockquote>
<p>Terminally ill patients should be able to legally end their own lives with medical assistance.</p>
</blockquote>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/166443/original/file-20170424-12650-de82yb.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/166443/original/file-20170424-12650-de82yb.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/166443/original/file-20170424-12650-de82yb.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=142&fit=crop&dpr=1 600w, https://images.theconversation.com/files/166443/original/file-20170424-12650-de82yb.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=142&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/166443/original/file-20170424-12650-de82yb.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=142&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/166443/original/file-20170424-12650-de82yb.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=179&fit=crop&dpr=1 754w, https://images.theconversation.com/files/166443/original/file-20170424-12650-de82yb.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=179&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/166443/original/file-20170424-12650-de82yb.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=179&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
<span class="attribution"><a class="source" href="http://www.abc.net.au/news/2016-05-25/vote-compass-euthanasia/7441176">ABC Vote Compass 2016</a></span>
</figcaption>
</figure>
<p>The same result – 75% agreement – was reported when the question was asked in the <a href="http://www.abc.net.au/news/2013-08-29/vote-compass-gay-marriage-euthanasia-abortion/4918494">2013 Vote Compass survey</a> (effective sample size of 422,403).</p>
<p>In the <a href="http://www.abc.net.au/news/2013-08-29/vote-compass-gay-marriage-euthanasia-abortion/4918494">2013</a> and <a href="http://www.abc.net.au/news/2016-05-25/euthanasia-debate:-abcs-vote-compass-reveals-how/7446590">2016</a> Vote Compass polls, 70%/71% of Catholics and 66%/68% of Protestants, respectively, strongly or somewhat agreed with the statement, as well as 77% from the Uniting Church in 2013. </p>
<p>As ABC Vote Compass itself <a href="http://www.abc.net.au/news/2016-05-12/vote-compass-data-reporting-faq/7409492">readily acknowledges</a>, Vote Compass is not a random sample, and it is not a poll. The sample is self-selected, although results are weighted to be representative of the Australian population.</p>
<p>The statement ABC Vote Compass asked people to respond to on this issue – “terminally ill people should be able to end their lives with medical assistance” – was much better than the one asked by the Australia Institute. It’s a less leading question, and doesn’t depend on unrelievable suffering.</p>
<h2>Support falls if euthanasia is not being requested for terminal illness</h2>
<p>It’s also worth noting that some polls, such as the <a href="https://www.ipsos-mori.com/Assets/Docs/Polls/economist-assisted-dying-topline-jun-2015.pdf">2015 Ipsos Mori/Economist</a> poll Gemmell cited, show support for voluntary euthanasia drops to as low as 36% if the patient’s condition is not terminal and the patient is “mentally or emotionally suffering”, rather than “physically suffering”.</p>
<p>More than 2,000 adults surveyed in Australia in 2015 were asked:</p>
<blockquote>
<p>Do you think it should be legal or not for a doctor to assist a patient aged 18 or over in ending their life, if that is the patient’s wish, provided that the patient is terminally ill (where it is believed that they have 6 months or less to live) of sound mind, and expresses a clear desire to end their life?</p>
</blockquote>
<p>73% of respondents said yes, it should be legal. They were also asked:</p>
<blockquote>
<p>Do you think it should be legal or not for a doctor to assist a patient aged 18 or over in ending their life, by the doctor administering life-ending medication?</p>
</blockquote>
<p>The “yes” response dropped to 64% for this question (which didn’t specify the patient’s health status). Support dropped again when people were asked: </p>
<blockquote>
<p>Do you think that it should be legal or not for a doctor to assist a patient in ending their life, if they are not terminally ill, but are physically suffering in a way that they find unbearable and which cannot be cured or improved with existing medical science? </p>
</blockquote>
<p>In these circumstances, 58% said “yes, it should be legal”. When the words “physically suffering” were swapped with “mentally or emotionally suffering”, support dropped to 36%. </p>
<h2>Some polls show Catholics and Christians are against euthanasia</h2>
<p>Not all polls or surveys on this issue are represented in the table that Gemmell provided. One example is the <a href="http://www.2016ncls.org.au/about/announcing-2016-ncls">National Church Life Survey</a>, conducted every five years for 25 years, which surveys churchgoers and local church leaders from more than 20 Christian denominations. It is run by <a href="http://www.ncls.org.au/">NCLS Research</a>, and is supported by the <a href="http://ume.nswact.uca.org.au/">Uniting Mission and Education</a>, the <a href="https://www.anglicare.org.au/">Anglicare</a> Diocese of Sydney, the <a href="https://www.catholic.org.au/">Australian Catholic Bishops Conference</a> and the <a href="http://www.acu.edu.au/">Australian Catholic University</a>.</p>
<p><a href="https://cdn.theconversation.com/static_files/files/7/76079-2017-04-24-polling-NCLS_Fact_Sheet_14011_Attitudes_to_euthanasia.pdf?1518043858">In 2011</a> a sample of Catholic, Anglican and Protestant churchgoers were asked:</p>
<blockquote>
<p>Do you agree or disagree: ‘People suffering from a terminal illness should be able to ask a doctor to end their life?’</p>
</blockquote>
<p>Only 24% of respondents agreed or strongly agreed; 26% were neutral or unsure, and 50% disagreed or strongly disagreed. Results broken down by denomination are as follows:</p>
<p><em>Responses to the statement “the terminally ill should be able to ask a doctor to end their life”.</em> </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/166447/original/file-20170424-24654-dvl85e.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/166447/original/file-20170424-24654-dvl85e.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/166447/original/file-20170424-24654-dvl85e.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=238&fit=crop&dpr=1 600w, https://images.theconversation.com/files/166447/original/file-20170424-24654-dvl85e.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=238&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/166447/original/file-20170424-24654-dvl85e.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=238&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/166447/original/file-20170424-24654-dvl85e.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=299&fit=crop&dpr=1 754w, https://images.theconversation.com/files/166447/original/file-20170424-24654-dvl85e.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=299&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/166447/original/file-20170424-24654-dvl85e.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=299&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
<span class="attribution"><a class="source" href="http://www.ncls.org.au/default.aspx?sitemapid=7207">NCLS Research.</a></span>
</figcaption>
</figure>
<p>The question asked in this survey is a good one, and it isn’t leading. However, there is insufficient information in the report about how the data was collected to judge its validity. </p>
<p>For example, even if the results were supposed to be anonymous, information about respondents’ gender and age was collected. The surveys were collected and returned to NCLS Research by the individual churches, and church leaders were provided with the survey results relating to their parishioners. It’s possible respondents moderated their answers under those circumstances, which does cast doubt on the credibility of the survey. </p>
<p>Nevertheless, it’s reasonable to say that while higher percentages of people in the wider community who identify with specific religions express support for assisted dying, there appears to be much lower support among regular churchgoers.</p>
<h2>Verdict</h2>
<p>Nikki Gemmell’s statement that 80% of Australians and up to 70% of Catholics and Anglicans support euthanasia laws is backed up by a number of surveys – but not all. Public support can drop significantly depending on the questions asked, how the survey was conducted and who conducted it.</p>
<p>Support for voluntary euthanasia is generally higher when the question asks about patients with “unrelievable suffering” who have “absolutely no chance of recovering”. Support falls when patients do not have a terminal illness. </p>
<p>Academic research conducted between 1995 and 2002 found that a majority of Australians supported legislation allowing voluntary euthanasia. There has been surprisingly little academic research on this question since then. <strong>– Colleen Cartwright</strong></p>
<h2>Review</h2>
<p>The article is balanced and generally presents an accurate summary of the spread of opinion on assisted death.</p>
<p>The author’s comments on leading questions and on questions that specify “unrelievable suffering” are well supported by the literature.</p>
<p>It’s worth adding that “assistance” might be thought by some respondents to include stopping treatment, something that is already legal. Five of the 10 surveys in the table Nikki Gemmell provided did not specify either “suicide” or a “lethal injection”. Of course, the other five surveys showed similarly high levels of support for assisted dying.</p>
<p>A related issue is that support might be lower if a model of assisted death is specified. The Ipsos study reported 73% approval for unspecified assistance, 64% support for a doctor “administering life-ending medication” and 55% support for a doctor “prescribing life-ending medication that the patient could take”. <strong>– Charles Douglas</strong></p>
<hr>
<p>Thank you to everyone who requested this FactCheck by tweeting with the hashtags #FactCheck #QandA. </p>
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<p><em>Update: This FactCheck was updated on May 9, 2017 to add more detail about how the National Church Life Survey was conducted.</em></p>
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<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/162128/original/image-20170323-13486-72k52f.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/162128/original/image-20170323-13486-72k52f.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/162128/original/image-20170323-13486-72k52f.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/162128/original/image-20170323-13486-72k52f.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/162128/original/image-20170323-13486-72k52f.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/162128/original/image-20170323-13486-72k52f.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/162128/original/image-20170323-13486-72k52f.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/162128/original/image-20170323-13486-72k52f.png?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>
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<span class="caption">The Conversation FactCheck is accredited by the International Fact-Checking Network.</span>
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<p class="fine-print"><em><span>Colleen Cartwright previously received government funding for research through the University of Queensland and Southern Cross University.</span></em></p><p class="fine-print"><em><span>Charles Douglas has received internal research funding from the University of Newcastle to conduct research into attitudes to assisted death.</span></em></p>During a discussion on Q&A, author Nikki Gemmell said 80% of Australians and up to 70% of Catholics and Anglicans support euthanasia laws. Is that right?Colleen Cartwright, Emeritus professor, Southern Cross UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/737552017-03-03T04:53:30Z2017-03-03T04:53:30ZIn places where it’s legal, how many people are ending their lives using euthanasia?<figure><img src="https://images.theconversation.com/files/159231/original/image-20170303-24331-15wkfi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">One paper reported that between 0.3% to 4.6% of all deaths are reported as euthanasia or physician-assisted suicide in jurisdictions where they are legal.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/126396110@N06/26137241265/in/photolist-FPEcdM-p44dbM-oDVwym-yjqsr-9yLRbh-xd3QZC-wxB2qJ-xvfSQt-xcZGPN-xd7PWP-xv9Fz4-ozjqCb-5xYYyD-s3inR-9BG9eQ-cQay4s-puzqPc-6HNRj7-qRKw1f-kowQG9-2V2uSq-pdnpsG-74taDB-74sJAK-8GggAp-EnGPHB-EnGPFn-aBq5BW-55PvFX-bgc1KX-8bdRFs-q7Gre-74x5z3-bsvp45-4yk6nn-pdVvm4-2A3qv6-53Z5nP-oUoibY-oDW3YX-6h6rZp-6hC8ZU-puydo2-pdnC1X-9gUcFY-DwyaEF-crVdu9-Aj6No-5J6uam-9gR6hF">Flickr/Alberto Biscalchin</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span></figcaption></figure><p>The Victorian Parliament will consider a bill to <a href="http://www.theage.com.au/victoria/victorian-parliament-to-vote-on-assisted-dying-laws-next-year-20161208-gt6t0w.html">legalise euthanasia</a> in the second half of 2017. That follows the South Australian Parliament’s decision to <a href="http://www.abc.net.au/news/2016-11-16/voluntary-euthanasia-debate-in-south-australia-goes-to-committee/8031776">knock back</a> a voluntary euthanasia bill late last year, and the issue has also cropped up in <a href="http://www.abc.net.au/news/2017-02-24/wa-election-barnett-mcgowan-christian-safe-schools-euthanasia/8298754">the run-up</a> to the March 11 Western Australian election.</p>
<p>With the issue back in the headlines, federal Labor’s justice spokesperson, Clare O'Neil, told <a href="http://www.abc.net.au/tv/qanda/txt/s4615749.htm">Q&A</a> that in countries where the practice is legal, “very, very small” numbers of people use the laws.</p>
<p>Whether or not you agree with O'Neil’s statement depends largely on your interpretation of the subjective term “very, very small”, but there is a growing body of data available on how many people are using euthanasia or assisted dying laws in <a href="https://www.ncbi.nlm.nih.gov/pubmed/27380345">places</a> such as the Netherlands, Belgium, Luxembourg, Colombia, Canada and some US states.</p>
<h2>Assisted dying, assisted suicide and euthanasia</h2>
<p>Many people use the terms “assisted dying”, “assisted suicide” and “euthanasia” interchangeably. But, technically, these phrases can have different meanings.</p>
<p>Assisted dying (sometimes also assisted death) is where the patient himself or herself ultimately takes the medication. Euthanasia, by contrast, is usually where the doctor administers the medication to the patient. </p>
<p>Assisted suicide includes people who are not terminally ill, but who are being helped to commit suicide, whereas assisted dying refers to people who are already dying. Some reports do not, however, distinguish between assisted dying and assisted suicide, and I will not distinguish them here.</p>
<p>In some jurisdictions, the word “euthanasia” is used to refer to both assisted dying/suicide (where the patient himself or herself takes the medication) and to euthanasia (where the doctor administers the medication to the patient). So “euthanasia” can sometimes be used as a broad term to cover a range of actions.</p>
<h2>Euthanasia and assisted suicide rates around the world</h2>
<p>According to a peer-reviewed <a href="https://www.ncbi.nlm.nih.gov/pubmed/27380345">paper</a> published last year in the respected journal JAMA:</p>
<blockquote>
<p>Between 0.3% to 4.6% of all deaths are reported as euthanasia or physician-assisted suicide in jurisdictions where they are legal. The frequency of these deaths increased after legalization … Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices.</p>
</blockquote>
<p>The authors of that paper said that 35,598 people died in Oregon in 2015. Of these deaths, 132, or 0.39%, were reported as physician-assisted suicides. The same paper said that in Washington in 2015 there were 166 reported cases of physician-assisted suicide (equating to 0.32% of all deaths in Washington in that year).</p>
<p>Interestingly, the same paper noted that US data show that:</p>
<blockquote>
<p>pain is not the main motivation for PAS (physician-assisted suicide)… The dominant motives are loss of autonomy and dignity and being less able to enjoy life’s activities.</p>
</blockquote>
<p>The authors said that in officially reported Belgian cases, pain was the reason for euthanasia in about half of cases. Loss of dignity is mentioned as a reason for 61% of cases in the Netherlands and 52% in Belgium.</p>
<p>A 2016 Victorian parliamentary <a href="http://www.parliament.vic.gov.au/file_uploads/LSIC_pF3XBb2L.pdf">report</a> has quoted from the UK Commission on Assisted Dying, which in turn referenced the work of John Griffiths, Heleen Weyers and Maurice Adams in their book <a href="https://books.google.com.au/books/about/Euthanasia_and_Law_in_Europe.html?id=x6YEQgAACAAJ">Euthanasia and Law in Europe</a>. The commission said:</p>
<blockquote>
<p>There are no official data in Switzerland on the numbers of assisted suicides that take place each year, as the rate of assisted suicide is not collected centrally. Griffiths et al observe that there are approximately 62,000 deaths in Switzerland each year and academic studies suggest that between 0.3% and 0.4% of these are assisted suicides. This figure increases to 0.5% of all deaths if suicide tourism is included (assisted suicides that involve non‑Swiss nationals).</p>
</blockquote>
<p>Around 3.7% of deaths in the Netherlands in 2015 were due to euthanasia. The Netherlands’ regional euthanasia review committees <a href="https://www.euthanasiecommissie.nl/uitspraken/jaarverslagen/2015/april/26/jaarverslag-2015">reported</a> that there were 5,516 deaths due to euthanasia in 2015. That is out of a <a href="https://www.statista.com/statistics/520011/total-number-of-deaths-in-the-netherlands/">total</a> of around 147,000 - 148,000 <a href="https://www.cbs.nl/en-gb/news/2016/04/population-growth-fuelled-by-immigration">deaths in the Netherlands</a> that year.</p>
<p>This figure represents an increase of 4% of deaths due to euthanasia <a href="https://www.euthanasiecommissie.nl/uitspraken/jaarverslagen/2015/april/26/jaarverslag-2015">compared to 2014</a>.</p>
<p>A 2012 <a href="https://www.ncbi.nlm.nih.gov/pubmed/22789501">paper</a> published in The Lancet reported on the results of nationwide surveys on euthanasia in the Netherlands in 1995, 2001, 2005 and 2010. The researchers said:</p>
<blockquote>
<p>In 2002, the euthanasia act came into effect in the Netherlands, which was followed by a slight decrease in the euthanasia frequency … In 2010, of all deaths in the Netherlands, 2.8% were the result of euthanasia. This rate is higher than the 1.7% in 2005, but comparable with those in 2001 and 1995.</p>
</blockquote>
<p>Another Netherlands-based <a href="http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2426428">study</a> published in the journal JAMA Internal Medicine reported in 2015 that: </p>
<blockquote>
<p>Certainly, not all requests are granted; studies conducted between 1990 and 2011 report rates of granting requests between 32% and 45%.</p>
</blockquote>
<p>A 2015 <a href="http://www.nejm.org/doi/citedby/10.1056/NEJMc1414527#t=citedby">paper</a> in the New England Journal of Medicine about euthanasia rates in the Flanders region of Belgium (the northern half of the country) noted:</p>
<blockquote>
<p>The rate of euthanasia increased significantly between 2007 and 2013, from 1.9% to 4.6% of deaths.</p>
</blockquote>
<h2>Filling in the bigger picture</h2>
<p>It can be hard to put these rates in context, but what is clear is that euthanasia is by no means a leading cause of death in countries where it is legal. For example, <a href="http://statbel.fgov.be/en/binaries/PRESS%20RELEASE%20Causes%20of%20death%202012_tcm327-267267.pdf">Statistics Belgium</a> said that for the year 2012, cardiovascular disease was the most common cause of death (28.8%), and cancer was the second most common cause of death (26%).</p>
<p>And in the Netherlands – where <a href="https://www.euthanasiecommissie.nl/uitspraken/jaarverslagen/2015/april/26/jaarverslag-2015">5,516</a> of deaths were due to euthanasia in 2015 – more than <a href="https://www.cbs.nl/en-gb/news/2015/38/number-of-dementia-related-deaths-increased-to-12-5-thousand">12,000</a> Dutch people died from the effects of dementia in 2014, approximately 10,000 Dutch people died from lung cancer and nearly 9,000 died from a heart attack. In <a href="https://www.cbs.nl/en-gb/news/2014/50/most-people-die-of-cancer-and-cardiovascular-disease">2013</a>, 30% (about 42,000) of Dutch deaths were from cancer and 27% (about 38,000) of Dutch deaths were from cardiovascular disease.</p>
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<p class="fine-print"><em><span>Andrew McGee 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>There is a growing body of evidence available on how many people are using euthanasia and assisted dying laws in places where it is legal.Andrew McGee, Senior Lecturer, Faculty of Law, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.