tag:theconversation.com,2011:/us/topics/dying-with-dignity-5373/articlesDying with dignity – The Conversation2020-06-02T12:14:48Ztag:theconversation.com,2011:article/1390932020-06-02T12:14:48Z2020-06-02T12:14:48ZDying virtually: Pandemic drives medically assisted deaths online<figure><img src="https://images.theconversation.com/files/338998/original/file-20200601-95032-ox99k0.jpg?ixlib=rb-1.1.0&rect=37%2C0%2C4955%2C3330&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The late Youssef Cohen moved from New York to Oregon in 2016 because of its aid-in-dying law. During the pandemic, assisted dying for terminal patients has gone online. </span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/youssef-cohen-sits-while-undergoing-cancer-treatment-as-his-news-photo/516336068?adppopup=true">John Moore/Getty Images</a></span></figcaption></figure><p>The coronavirus has <a href="https://theconversation.com/different-faiths-same-pain-how-to-grieve-a-death-in-the-coronavirus-pandemic-138185">stripped many of a say in the manner and timing of their own deaths</a>, but for some terminally ill people wishing to die, a workaround exists. Medically assisted deaths in America are increasingly taking place online, from the initial doctor’s visit to the ingestion of life-ending medications.</p>
<p><a href="https://www.deathwithdignity.org/learn/death-with-dignity-acts/">Assisted dying laws</a> allow terminally ill, mentally competent patients in <a href="https://www.deathwithdignity.org/take-action/">10 U.S. jurisdictions</a> to hasten the end of their life. Waiting periods of 15 to 20 days mean that patients with acute COVID-19 <a href="https://vimeo.com/421297275">won’t likely meet</a> the requirements of these laws.</p>
<p>But the move to digitally assisted deaths during the pandemic has enabled other <a href="https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/requirements.pdf">qualified patients</a> to continue to exercise the right to die. While telemedicine is helping some people die on their own terms, it also makes the process harder on family members, who must now take a more active role in their loved one’s final act. </p>
<h2>Assisted dying in America</h2>
<p>I have spent the <a href="https://anitahannig.com/">last four years studying</a> <a href="https://theconversation.com/assisted-dying-is-not-the-easy-way-out-129424">assisted dying</a> in America, particularly in Oregon and Washington, which have the <a href="https://www.finalexit.org/chronology_right-to-die_events.html">country’s longest-standing assisted dying laws</a>. California, Colorado, the District of Columbia, Hawaii, Maine, Montana, New Jersey and Vermont also allow medical assistance in dying. </p>
<p>A quirk in these laws has enabled the process to go virtual. While extremely <a href="https://www.wbur.org/cognoscenti/2020/02/04/marieke-vervoort-medically-assisted-dying-anita-hannig">restrictive</a> in most ways, U.S. assisted dying laws don’t require a physician or other health care provider to be present at an assisted death.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=872&fit=crop&dpr=1 600w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=872&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=872&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1096&fit=crop&dpr=1 754w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1096&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1096&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">Aid-in-dying laws give dying patients some agency.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/tish-tanski-massages-her-husband-john-speh-john-speh-is-news-photo/166232921?adppopup=true">Tom Herde/The Boston Globe via Getty</a></span>
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<p>Assisted dying laws require two doctors to independently evaluate a patient’s request for medical assistance in dying. But patients must be physically able to ingest the life-ending medication themselves, a safeguard that ensures they are acting voluntarily. </p>
<p>In Canada, by contrast, clinicians <a href="https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-april-2019.html">typically administer</a> the lethal dose through an injection. Normally that’s a <a href="https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Medical_Assistance_in_Dying_MAID.pdf">faster, safer and more effective</a> method. But COVID-19 concerns are compelling some <a href="https://www.theglobeandmail.com/canada/article-medical-assistance-in-dying-services-being-cancelled-in-ottawa/">Canadian providers</a> to suspend assisted deaths.</p>
<h2>Attending to the dying</h2>
<p>Though U.S. physicians aren’t required to attend an assisted death, many patients and their families do have help. In 2019, according to the Oregon Health Authority, <a href="https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year22.pdf">57% of all assisted deaths in Oregon</a> were attended by a physician, another health care provider or a volunteer. </p>
<p><a href="https://eolcoregon.org/">Trained volunteers</a> – many of them former nurses, social workers and behavioral health experts – are critical in helping patients <a href="https://endoflifewa.org/">navigate the tricky path</a> toward an assisted death. They know which physicians are willing to see aid-in-dying patients and which pharmacies stock the necessary medications. </p>
<p>In the United States, doctors prescribe a compound of four drugs – digoxin, diazepam, morphine and amitriptyline – to be mixed with water or juice. Within minutes of drinking the cocktail, the patient falls asleep, the sleep progresses to a coma, and eventually the patient’s heart stops.</p>
<p>Volunteers help mix the medication and supervise the ingestion, allowing families to be emotionally present with a dying loved one.</p>
<p>Now, because of the coronavirus, volunteers are accompanying patients and families over Zoom, and physicians <a href="https://www.acamaid.org/telemedicine/">complete their evaluations through telemedicine</a>, based on recommendations released by the American Clinicians Academy on Medical Aid in Dying in March 2020.</p>
<p>Telehealth – a <a href="https://evisit.com/resources/history-of-telemedicine/">health care solution</a> long used in remote areas – has <a href="https://www.nytimes.com/2020/05/08/health/coronavirus-telemedicine-seniors.html">become a critical tool</a> of the COVID-19 pandemic. But some aid-in-dying physicians have drawn on telemedicine to reach far-flung patients for years. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.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">COVID-19 has made telemedicine a staple in healthcare.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/mature-female-doctor-using-digital-tablet-at-royalty-free-image/1200010115?adppopup=true">FG Trade/Getty Images</a></span>
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</figure>
<p>“My patients love telemedicine,” Dr. Carol Parrot, a physician who lives on an island in Washington, told me during a Skype interview in 2018. “They love that they don’t have to get dressed. They don’t have to get into a car and drive 25 miles and meet a new doctor and sit in a waiting room.” </p>
<p>Parrot says she sees 90% of her patients online, visually examining a patient’s symptoms, mobility, affect and breathing. </p>
<p>“I can get a great deal of information for how close a patient is to death from a Skype visit,” Parrot explained. “I don’t feel badly at all that I don’t have a stethoscope on their chest.”</p>
<p>After the initial visit, whether in person or online, aid-in-dying physicians <a href="https://www.acamaid.org/telemedicine/">carefully collate their prognosis with the patient’s prior medical records and lab tests</a>. Some also consult the patient’s primary physician. </p>
<h2>‘Tough and tender situations’</h2>
<p>The pivot to telemedicine hasn’t significantly changed that process. But patient advocacy organizations and physicians say the pandemic has amplified existing <a href="https://theconversation.com/assisted-dying-is-not-the-easy-way-out-129424">problems of access</a> to assisted dying. </p>
<p>“These are tough and tender situations even without COVID,” said Judy Kinney, executive director of the volunteer organization <a href="https://endoflifewa.org/">End of Life Washington</a>, via email. </p>
<p>Invariably, some terminally ill patients who wish to die face <a href="https://www.theguardian.com/society/2020/jan/28/catholic-hospitals-lead-fight-against-access-drugs-assisted-dying">barriers</a>. <a href="https://www.nap.edu/read/25131/chapter/7#103">Some assisted living and nursing facilities</a> have policies against assisted dying for religious reasons. </p>
<p>During the pandemic, residents in these institutions who lack access to a digital device – or the skills to videoconference with a doctor – may not be able to qualify for the law, according to Dr. Tony Daniels, a prescribing physician from Portland.</p>
<p>Meanwhile, a family member who objects to assisted dying may more easily undercut the process when a volunteer isn’t there in person to make sure a patient’s final wishes are carried out. </p>
<h2>Facilitating death</h2>
<p>Dying via telemedicine can be hard even on family members who stand behind their loved one’s decision, my research finds. Without a volunteer or physician present, families must assume a more active role in the dying process. </p>
<p>That includes mixing the life-ending medications themselves. Pre-pandemic, many families told me that preparing the lethal cocktail would make them feel like they were facilitating – and not just morally supporting – a loved one’s death. They were glad to outsource this delicate task. </p>
<p>Now they don’t have that choice. </p>
<p>Yet the option to assist in a loved one’s final act may be a comfort in this pandemic. It allows dying people to choose the manner and timing of their own death – and ensures they won’t be alone.</p>
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<p class="fine-print"><em><span>Anita Hannig does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Terminally ill patients in nine states and Washington, DC can use telemedicine to get a doctor’s approval to hasten their end of life. But family members must mix the lethal drug cocktail themselves.Anita Hannig, Associate Professor of Anthropology, Brandeis UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/878752017-11-23T14:15:15Z2017-11-23T14:15:15ZWhy doctors need to improve the way we discuss assisted dying<p>Assisted dying can be a divisive and polarising subject. But there is one aspect on which most people probably agree – the need to improve the conversations people have about death.</p>
<p>At the moment, there is uncertainty in the UK regarding what people – especially <a href="http://www.pulsetoday.co.uk/gps-asked-to-provide-patients-with-medical-reports-for-dignitas/20000658.article">health professionals</a> – can and cannot say when the topic of assisted dying comes up. Conversation can become especially stilted when it turns to patients obtaining the medical documentation required for an assisted death abroad. </p>
<p>The situation requires <a href="http://bjgp.org/content/67/664/515">clarification</a>. Currently, if a doctor in the UK writes a specific report to help with an assisted death abroad (three organisations in Switzerland accept UK citizens), the General Medical Council (GMC) may view this as a “fitness to practice” issue. </p>
<p>However, if a doctor provides copies of medical records, even with the knowledge that they will be used for an assisted death, it is <em>not</em> a fitness to practice issue. The GMC’s position is that this would be “too far removed from the act of suicide to constitute encouragement or assistance”. Yet the doctor can still refuse this request for documentation. (The patient can then appeal to the information commissioner under the Data Protection Act 1998, but this may be unsuccessful.)</p>
<p>The desire to hasten death affects a significant proportion of dying people – not just the small proportion who undergo an assisted death. In places where a form of assistance to die is legal, such as the US state of Oregon, <a href="http://www.nejm.org/doi/full/10.1056/NEJM200002243420806#t=abstract">just 10-20%</a> have their request agreed to. The ability to talk about these desires and the presence of an option can “<a href="https://www.theguardian.com/lifeandstyle/2014/oct/26/cancer-assisted-dying-jo-beecham">make the future feel navigable</a>”.</p>
<p>It is hard to measure how common a desire to hasten death is. One study revealed it was <a href="http://spcare.bmj.com/content/1/2/140">up to 11%</a> within people in a UK hospice. The meaning behind this desire is varied, ranging from an avenue to begin talking about dying more generally through to wanting greater control.</p>
<p>I started my <a href="http://assisteddyingresearch.wordpress.com">own research</a> after noticing two major barriers in the conversations about assisted dying between doctors and patients. First, the Swiss organisations advise applicants not to divulge the reason for a request for medical documents due to the risk of refusal. Second, the uncertainty surrounding professional guidance means patients are not telling doctors about their plans or fears (and they may not be asked about them). </p>
<p>These barriers are affecting the crucial therapeutic alliance between doctor and patient. They also remove opportunities to highlight the specific needs of the dying. The fact that people change their mind about hastening their death is a reason to address their fears upfront – not push them away or ignore them. Yes, end-of-life care needs more funding, but this is of no use if those that need it do not feel they can be heard.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/196114/original/file-20171123-18012-v30qeh.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/196114/original/file-20171123-18012-v30qeh.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=416&fit=crop&dpr=1 600w, https://images.theconversation.com/files/196114/original/file-20171123-18012-v30qeh.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=416&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/196114/original/file-20171123-18012-v30qeh.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=416&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/196114/original/file-20171123-18012-v30qeh.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=523&fit=crop&dpr=1 754w, https://images.theconversation.com/files/196114/original/file-20171123-18012-v30qeh.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=523&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/196114/original/file-20171123-18012-v30qeh.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=523&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">‘Travel plans’ often go undiscussed.</span>
<span class="attribution"><span class="source">Dignity in Dying</span></span>
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<p>Sadly, this is what is borne out in Dignity in Dying’s recent publication <a href="https://features.dignityindying.org.uk/true-cost-dignitas/">The True Cost: How the UK Outsources Death to Dignitas</a>. The report revealed a large discrepancy between those who felt they <em>should</em> be able to discuss these desires (82%) with those who felt that they <em>would</em> (32%). One respondent commented: </p>
<blockquote>
<p>I wish there was somebody that was medical that you could talk to and [who could] explain … I just wish there were people you could talk to.</p>
</blockquote>
<p>Another recalled a doctor saying: “You know you can’t talk about this sort of thing.”</p>
<h2>Dying to talk</h2>
<p>Throughout the publication runs a desire for openness to be able to talk about thoughts they are having, researching and acting upon. Instead, people encounter systemic obstruction, disapproving prejudgement and arbitrary practices. At its worst, the document highlights active silencing of these voices – people being told they mustn’t talk about assisted dying with anyone involved in their care. </p>
<p>Being able to talk openly about a desire to hasten death serves a vital palliative and therapeutic function. The opportunity to discuss perceptions of dying on the patient’s – rather than the profession’s – terms would help people to consider what it means (for them) to die. It could also serve to reaffirm social bonds, empower self-identity and give a voice to suffering. </p>
<p>Yet currently, people are possibly going abroad to die <a href="http://www.tandfonline.com/doi/abs/10.1080/01459740.2016.1255610">without ever talking</a> to a healthcare professional about it.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"847526849748094976"}"></div></p>
<p>Everyone wants to work towards getting our only experience of death right. For this to occur, the medical profession must avoid its dominance over end-of-life discussions, and seek instead to address the concerns of the dying – whatever they are. If not, the harm caused by the current fudge of legislative and professional guidance will not only go unrecognised, it will grow. </p>
<p>Listening and discussing requests to hasten death is not remotely illegal. The <a href="https://www.gmc-uk.org/18_JUNE_2015_When_a_patient_seeks_advice_or_information_about_assistance_to_die.pdf_61449907.pdf">GMC itself states</a> that doctors should “be prepared to listen and to discuss the reasons for the patient’s request”.</p>
<p>Improving these conversations is an urgent middle ground that both sides of the assisted dying debate can surely agree on. It is vital that the voices of the dying are heard.</p><img src="https://counter.theconversation.com/content/87875/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>1) PhD Studentship from the National Institute for Health Research: School For Primary Care Research.
2) Member of Healthcare Professionals For Assisted Dying.
The views and opinions expressed are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health.</span></em></p>At the moment there is too much left unsaid.Paul Teed, PhD candidate, School of Population Health Sciences, Bristol Medical School, University of BristolLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/608282016-06-10T17:29:12Z2016-06-10T17:29:12ZAid to dying: What Jainism – one of India’s oldest religions – teaches us<figure><img src="https://images.theconversation.com/files/126173/original/image-20160610-29225-9kpg6l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">What do different end-of-life conversations look like?</span> <span class="attribution"><a class="source" href="http://www.shutterstock.com/cat.mhtml?lang=en&language=en&ref_site=photo&search_source=search_form&version=llv1&anyorall=all&safesearch=1&use_local_boost=1&autocomplete_id=&search_tracking_id=tpPFBVoMuWQBuIVjju7BbA&searchterm=death&show_color_wheel=1&orient=&commercial_ok=&media_type=images&search_cat=&searchtermx=&photographer_name=&people_gender=&people_age=&people_ethnicity=&people_number=&color=&page=1&inline=318595376">Rose image via www.shutterstock.com</a></span></figcaption></figure><p>On June 9, <a href="http://www.nbcnews.com/news/us-news/patients-ponder-life-death-california-s-new-right-die-law-n588611">a law allowing patients</a> with terminal illnesses to end their lives with help from a physician came into effect in California, opening conversations about whether human life should be prolonged against the desire to die peacefully and with dignity.</p>
<p>A similar yet different conversation has been taking place in India for the past several years, but in reverse.</p>
<p>In one of India’s religious traditions, Jainism, those at the end of life can choose to embrace a final fast transition from one body to another. However, a recent court case has challenged the constitutionality of this practice. <a href="http://www.sunypress.edu/p-1637-nonviolence-to-animals-earth-an.aspx">As an expert</a> in the religions of India and a frequent visitor, I have been following this issue with keen interest. </p>
<h2>A rite to final passage</h2>
<p>While on a visit to a Jain university in Ladnun, Rajasthan in western India in 1989, I had an opportunity to observe the practice of “Sallekhana” or “Santhara,” a somber rite through which one fasts to death.</p>
<p>A group of enthusiastic nuns rushed me in for a blessing being imparted to an octogenarian nun, Sadhvi Kesharji, who had taken this vow 28 days earlier. The nun had been diagnosed with a fatal kidney disease and been treated, but to no avail. </p>
<p>It was an auspicious moment. Her spiritual preceptor, Acharya Tulsi, praised her six decades as a nun and noted the lightness of her spirit and the strength of her resolve which guaranteed safe passage into her next incarnation. </p>
<p>She passed away 12 days later, in a prayerful state.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/126171/original/image-20160610-29203-fmvnbk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/126171/original/image-20160610-29203-fmvnbk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=379&fit=crop&dpr=1 600w, https://images.theconversation.com/files/126171/original/image-20160610-29203-fmvnbk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=379&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/126171/original/image-20160610-29203-fmvnbk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=379&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/126171/original/image-20160610-29203-fmvnbk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=477&fit=crop&dpr=1 754w, https://images.theconversation.com/files/126171/original/image-20160610-29203-fmvnbk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=477&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/126171/original/image-20160610-29203-fmvnbk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=477&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 Jainism, those at the end of life can embrace a final fast.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/cat.mhtml?lang=en&language=en&ref_site=photo&search_source=search_form&version=llv1&anyorall=all&safesearch=1&use_local_boost=1&autocomplete_id=&search_tracking_id=PsGbcBznXxduixvSfHvtjA&searchterm=jain%20nun&show_color_wheel=1&orient=&commercial_ok=&media_type=images&search_cat=&searchtermx=&photographer_name=&people_gender=&people_age=&people_ethnicity=&people_number=&color=&page=1&inline=120292858">Jain nun image via www.shutterstock.com</a></span>
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<p>This is not the only such case. It is estimated that some <a href="http://www.npr.org/sections/goatsandsoda/2015/09/02/436820789/fasting-to-the-death-is-it-a-religious-rite-or-suicide">200 Jains, both lay and monastic</a>, complete the final fast each year. Jains living elsewhere in the world observe the practice as well.</p>
<p>For example, two Jain women who were born in India but spent most of their adult lives in the United States <a href="http://channel.nationalgeographic.com/taboo/videos/fasting-to-death/">chose to fast</a> in the last days prior to death. Vijay Bhade, a Jain woman from West Virginia, entered a fast unto death in 1997. A more recent case was Bhagwati Gada, from Texas, who suffered from advanced stage cancer and decided to fast unto death in 2013, after going through multiple rounds of chemotherapy. </p>
<h2>Who are the Jains?</h2>
<p><a href="https://books.google.com/books/about/The_Jains.html?id=5ialKAbIyV4C">Jainism arose</a> more than 2,800 years ago in northeast India. It teaches a doctrine proclaiming the existence of countless eternal souls who, due to their actions or karma, bind themselves to repeated lifetimes. </p>
<p>These souls could manifest as elemental beings in the earth or water or fire or air. They could evolve to become micro-organisms and plants or eventually take forms as worms, insects, birds, reptiles or mammals.</p>
<p>By committing acts of goodness, they might take human form and ascend to a place of everlasting freedom at the highest limits of the universe, from which they continue to observe forever the repeated rounds of existence experienced by the many souls below. </p>
<p>Jains <a href="http://www.jainworld.com/book/jainism/ch11.asp">do not believe</a> in a creator God or an external controller. All experiences, good and bad, are due to one’s own exertions. The <a href="http://www.sacred-texts.com/jai/5vows.txt">key to spiritual ascent</a> resides in the performance of five vows also shared by Yogis and Buddhists in India: nonviolence, truthfulness, not stealing, celibacy and nonpossession. </p>
<p>Jains believe the practice of these vows helps release fettering karmas that impede the energy, consciousness and bliss of the soul. Every ethical success lightens the soul of its karmic burden. Mohandas Gandhi, the well-known leader of India’s independence, who grew up in the company of Jains, employed these vows personally and as a collective strategy of nonviolence to help India overcome the shackles of British colonization.</p>
<h2>Freedom yes, but can there be coercion?</h2>
<p>Up until recent years, the fast unto death process <a href="http://www.jinvaani.org/acharya-shri-shantisagar-ji.html">has been celebrated</a> with newspaper announcements that laud the monks, nuns, laymen and laywomen who undergo this vow. But of late, questions are being raised whether it can result in coercion and cruelty.</p>
<p>In 2006, a young lawyer in Rajasthan, Nikhil Soni, <a href="http://rhccasestatus.raj.nic.in/smsrhcb/rhbcis/judfile.asp?ID=CW%20%20%20&nID=7414&yID=2006&doj=8/10/2015">challenged the constitutionality</a> of this act, stating that it violates the anti-suicide laws that had been in put place by the British to stop the immolation of widows on their husband’s funeral pyre. The practice of widow burning has endured, despite many <a href="http://www.kashgar.com.au/articles/life-in-india-the-practice-of-sati-or-widow-burning">efforts to abolish the practice</a>. </p>
<p>The high court of Rajasthan ruled in favor of Soni in 2015, effectively making the practice of fasting to death punishable by law. However, some weeks later, the Supreme Court of India <a href="http://www.thehindu.com/news/national/supreme-court-lifts-stay-on-santhara-ritual-of-jains/article7600851.ece">placed a stay</a> on this ruling. The case is still awaiting its final verdict. Observant Jains claim this is an important part of their faith. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/126175/original/image-20160610-29219-1e9egp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/126175/original/image-20160610-29219-1e9egp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=398&fit=crop&dpr=1 600w, https://images.theconversation.com/files/126175/original/image-20160610-29219-1e9egp5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=398&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/126175/original/image-20160610-29219-1e9egp5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=398&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/126175/original/image-20160610-29219-1e9egp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/126175/original/image-20160610-29219-1e9egp5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/126175/original/image-20160610-29219-1e9egp5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&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 fast is a spiritually guided process.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/cat.mhtml?lang=en&language=en&ref_site=photo&search_source=search_form&version=llv1&anyorall=all&safesearch=1&use_local_boost=1&autocomplete_id=&search_tracking_id=GGBTe2nRw-4xe0V7YDc-5Q&searchterm=jain%20monk&show_color_wheel=1&orient=&commercial_ok=&media_type=images&search_cat=&searchtermx=&photographer_name=&people_gender=&people_age=&people_ethnicity=&people_number=&color=&page=1&inline=172958246">Jain nun image via www. shutterstock.com</a></span>
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<p>Entering the fast requires counsel and permission from one’s spiritual advisor. And the process of rejection of food is gradual. First, one takes some yogurt, then only milk, then only juice, eventually moving from water to total rejection of any nutrition or hydration. </p>
<p>Physicians state that this is <a href="http://www.kevinmd.com/blog/2015/10/terminal-dehydration-a-gentle-way-to-die.html">not death by starvation</a> but by dehydration. The body automatically <a href="http://abcnews.go.com/Health/Schiavo/story?id=531907">goes into a state of ketosis</a> (when the body starts to break down stored fat for energy), often accompanied by a peaceful state. </p>
<h2>Rights versus rites approach</h2>
<p>What can we learn from such spiritual practices?</p>
<p>Debates on end of life focus on the “rights” approach, thus appealing to the rational mind. Spiritual traditions on the other hand assert that it makes no sense to prolong suffering. They use a “rites” approach to the inevitable passing of the human body. </p>
<p><a href="https://www.jstor.org/stable/23444173?seq=1#page_scan_tab_contents">Jains believe</a> that the soul has always been here, that the soul cannot be destroyed and that through the process of death, one transitions to a new body. </p>
<p>The Jain tradition shows how we can move without attachment into death rather than clinging to life. In their acceptance of the inevitable, they set an example that death is not an evil but an opportunity to reflect on a life well-lived and look forward to what lies ahead.</p><img src="https://counter.theconversation.com/content/60828/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>I serve on the Advisory Boards for the International school for Jain Studies in Delhi, the Jaina Studies Centre University of London & the Ahimsa Center in Pomona CA.</span></em></p>California now allows terminally ill people to end their lives. In the 2,800-year-old Jain tradition, individuals can choose to fast unto death, when it makes no sense to prolong suffering.Christopher Key Chapple, Professor of Indic and Comparative Theology, Loyola Marymount UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/414952015-06-22T20:18:05Z2015-06-22T20:18:05ZEnd-of-life care: no, we don’t all want ‘whatever it takes’ to prolong life<figure><img src="https://images.theconversation.com/files/82517/original/image-20150521-5921-gae4j4.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1000%2C625&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The concept of a timely and dignified death has been replaced by an imperative to keep us alive at all costs.</span> <span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-201931477/stock-photo-the-hands-of-a-very-old-and-skinny-woman-in-bed.html?src=kK-91KuukDx8MBAK3rdOLg-1-12">Nielskliim/Shutterstock</a></span></figcaption></figure><p>We all die eventually, of course, but these days it’s very hard for doctors and loved ones to let patients and relatives die without first doing “whatever it takes” to try to keep them alive. That is, unless they’ve left clear instructions to the contrary. </p>
<p>The overwhelming priority for doctors is to save life. In the last few decades, technologies have progressed so far and fast that doctors are able to embark on treatments that until recently did not exist, or were too risky to consider. </p>
<p>The extra years of good health are wonderful. But everything comes at a price. While we and our loved ones can often be kept alive, this may involve burdensome treatment and awful outcomes. </p>
<p>But while the default position of medicine is to prolong life, staying alive isn’t everyone’s number-one priority, as my soon-to-be published survey results reveal.</p>
<h2>Quality of life</h2>
<p>Human choice is rarely logical. We naturally want everything good and nothing bad; real choices only become clear when we are forced to make trade-offs. </p>
<p>This is particularly important when investigating wishes about something as unattractive as death. Death can’t be considered in isolation (by simply asking “Do you want to avoid dying?”) but has to be considered in the context of other possible outcomes that people might consider to be worse. </p>
<p>Using this type of human choice methodology, my colleagues and I surveyed 1,166 Australians aged over 55 about their end-of-life care wishes. </p>
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<img alt="" src="https://images.theconversation.com/files/84285/original/image-20150609-8719-138g08v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/84285/original/image-20150609-8719-138g08v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=542&fit=crop&dpr=1 600w, https://images.theconversation.com/files/84285/original/image-20150609-8719-138g08v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=542&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/84285/original/image-20150609-8719-138g08v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=542&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/84285/original/image-20150609-8719-138g08v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=682&fit=crop&dpr=1 754w, https://images.theconversation.com/files/84285/original/image-20150609-8719-138g08v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=682&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/84285/original/image-20150609-8719-138g08v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=682&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="attribution"><span class="source">The Conversation</span></span>
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<p>We found the respondents fell into four broad groups: </p>
<ul>
<li><p>61% of over-75s and 42% of under-75s strongly oppose any intervention that prolongs life in poor health or results in a poor quality of life. They generally reject burdensome treatment. This group has a particular aversion to being kept alive in the presence of dementia. </p></li>
<li><p>7% of over-75s and 6% of under-75s want medical interventions no matter what the chances of success and/or degree of impairment. </p></li>
<li><p>32% of over-75s and 33% of under-75s have limits and concerns but are willing to make various “trade-offs” about treatment and outcomes. They take “each decision on merit”. </p></li>
<li><p>The remaining 19% of those aged under 75 years show weak preferences with no discernible patterns. </p></li>
</ul>
<p>So the default position “to do everything to save life, no matter what” addresses the wishes of only a small minority of patients. </p>
<h2>Applying these preferences</h2>
<p>If you happen to be one of the 7% who want all possible medical interventions, you probably need to do nothing to ensure that you get all the treatment available. Though it would be wise to advise others of your desire so they don’t underestimate your determination. </p>
<p>If you are one of the remaining 93%, you need to act to make your wishes for treatment at the end of your life crystal clear. They need to be unambiguous and authoritative enough for doctors and family members to feel confident to respect them. </p>
<p>This is the basis of <a href="https://theconversation.com/its-your-choice-how-to-plan-for-a-better-death-32327">advance care planning</a>, where people are asked to identify the things they value, their priorities and what they would consider to be unacceptable outcomes. These wishes can also be put into legal documents called <a href="https://theconversation.com/its-your-choice-how-to-plan-for-a-better-death-32327">advance care directives</a>. </p>
<p>We are all very different and what one person might consider utterly unacceptable someone else may accept without question; for instance, being unable to speak or to eat.</p>
<p>Unfortunately, the process of thinking about all this is uncomfortable and the concepts are difficult. We have a natural tendency to block out bad and difficult things; never getting round to doing them, or not finishing. </p>
<p>Feedback from our attitudinal study suggested answering questions helped people think about issues they’d not considered previously. This prompted my colleagues and I to develop an online tool called <a href="http://www.myvalues.org.au">My Values</a>, to help people start advance care planning. </p>
<p>After answering questions, users receive an instant analysis identifying the themes that are strongly and consistently reflected in the answers. Users can then use the report as a first step to having a conversation with their family, their doctor and most importantly with themselves.</p>
<p>Others might prefer to talk with their doctor or to make an appointment with a specific Advance Care Planning facilitator, where such a service is available. </p>
<p>It’s always going to be difficult, but now is the time to start thinking and talking about what what matters at the end of our life.</p><img src="https://counter.theconversation.com/content/41495/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Charles Corke conceived the MyValues concept and is involved in its development. He receives funding from the Victorian Department of Health.</span></em></p>We all die eventually, of course, but these days it’s very hard for doctors and loved ones to let patients and relatives die without doing “whatever it takes”.Charles Corke, Associate Professor of Medicine, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/424562015-05-28T13:45:06Z2015-05-28T13:45:06ZWe all deserve the right to die without pain or fear, but assisted suicide won’t fix that<figure><img src="https://images.theconversation.com/files/83239/original/image-20150528-32175-1xwlhbn.png?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">How the Daily Mail reported Jeffrey Spector's final meal with his family.</span> </figcaption></figure><p>What connects these two recent news stories? Jeffrey Spector, a 54-year-old businessman with a spinal tumour, <a href="http://www.independent.co.uk/news/uk/home-news/dignitas-death-of-british-father-jeffrey-spector-prompts-renewed-debate-on-assisted-suicide-10275335.html">travels to Dignitas in Zurich to commit suicide</a>, with support from his family; and the Health Service Ombudsman publishes a report called “<a href="http://www.ombudsman.org.uk/reports-and-consultations/reports/health/dying-without-dignity">Dying without Dignity</a>”, which criticises the end-of-life care provided by the NHS.</p>
<p>Campaigners for legal reform argue that Spector’s choice of death shows his search for dignity at the end of life and the desire to retain control: in a word, “autonomy”. But the ombudsman’s report – and a closer reading of the cases which constantly appear in the media – suggest it’s not autonomy. It’s mainly fear. </p>
<p>For some years there has been a persistent and sophisticated campaign to persuade us to bring in a legal right to assistance in committing suicide. </p>
<p>The legal campaign swings between the courts and parliament. In the courts, desperately ill people with a strong call on our empathy – and a very articulate account of their situation and their wishes – are funded to bring human rights cases. In parliament, a series of bills have been introduced, of which Lord Falconer’s <a href="http://services.parliament.uk/bills/2014-15/assisteddying.html">House of Lords bill</a> (which he has promised to re-introduce) was the latest. </p>
<p>In the media, litigants waive anonymity to argue their cases before the bar of public opinion – and other cases and stories are presented (such as trips to Dignitas) which present the campaigners’ account of the issues. </p>
<h2>End-of-life care</h2>
<p>All this takes place against a particular demographic and economic background. As everybody knows, we have an ageing population. This means more illness and, inevitably, more people dying. However, the state of the economy makes it difficult to increase NHS funding (even if it isn’t being reduced), and this leads to financial restrictions for end-of-life care.</p>
<p>A great deal of the need is taken up by private hospice care, charitable funding for community nursing support and family and friends. These can do an outstanding job: I will never forget what they did for my mother and sister during the terrible summer of 2006 when they both died of ovarian cancer.</p>
<p>But the ombudsman’s report gives heart-wrenching examples of how it goes wrong and demands solutions to six problems: failure to recognise that someone is dying; poor pain control; poor communication; inadequate out-of-hours services; poor care planning and delays in diagnosis and referral. </p>
<p>None of these problems requires a change in the law, or a reinterpretation of human rights. Everybody agrees we should have a right to decent end-of-life care. </p>
<h2>Dignity and control</h2>
<p>The fundamental terms of the debate, as framed by the campaigners, are that people should have a choice about how they live and, by extension, how they die. Dignity, in the context of death, is identified not just as a pain-free death but a chosen time of death. </p>
<p>Undignified death is death which lacks autonomy. It is undoubtedly true that for a lot of people, a feeling of being in control of their lives is very important. It matters more to some than others, but it is a legitimate part of our human rights. It is protected by <a href="http://www.equalityhumanrights.com/sites/default/files/documents/humanrights/hrr_article_8.pdf">Article 8 of the European Convention on Human Rights</a>.</p>
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<span class="caption">Dying without Dignity: the ombudsman’s report.</span>
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<p>However, an examination of <a href="http://www.ombudsman.org.uk/reports-and-consultations/reports/health/dying-without-dignity">the ombudsman’s report</a> shows little evidence of the importance of choosing when one dies. It shows people who care about knowing that they are going to die, about being able to prepare to die (mainly by saying goodbye), about choosing where to die and with whom. Naturally, it also shows a concern for pain-free death. </p>
<p>What offends us about the case studies in the report is the unexpectedness, squalor and loneliness of the deaths described. It is this that we fear. </p>
<p>An examination of Jeffrey Spector’s case is instructive. He chose to die “early” because he feared the paralysis threatened by his disease. His response to that fear was to take control.</p>
<p>The chief campaigning organisation has chosen the name Dignity in Dying. The ombudsman’s report is entitled “<a href="http://www.ombudsman.org.uk/about-us/news-centre/press-releases/2015/too-many-people-dying-without-dignity,-ombudsman-service-report-finds">Dying without Dignity</a>”. But there is a mismatch. </p>
<p>Put simply, if the fears illustrated in the report could be dispelled, we would not need the reform for which the pressure group campaigns.</p><img src="https://counter.theconversation.com/content/42456/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Timothy James does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A recent ombudsman’s report suggests that most people are more concerned with end-of-life care than the right to end their lives.Timothy James, Senior Lecturer in Medical Law and Ethics, Birmingham City UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/418432015-05-19T05:11:06Z2015-05-19T05:11:06ZDying matters. That’s why we must listen to patients’ wishes<figure><img src="https://images.theconversation.com/files/82048/original/image-20150518-25422-u89s8r.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Dying with dignity</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>My mother, Sheila Kitzinger, died last month, with good symptom management and with as much choice and control as possible. Her written “<a href="http://www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx">Advance Decision</a>” helped ensure that her wishes were followed and she died at home, cared for by her family. </p>
<p>Her experience contrasts starkly with that of my sister, <a href="http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=5557&blogid=140">Polly Kitzinger</a>, who was severely brain injured in a car crash six years ago. Polly was subject to a series of life-sustaining interventions (while she was first unconscious and then minimally conscious) that we, her family, believe she would have refused if she had been able.</p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/82096/original/image-20150518-25407-1yydqz0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/82096/original/image-20150518-25407-1yydqz0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=762&fit=crop&dpr=1 600w, https://images.theconversation.com/files/82096/original/image-20150518-25407-1yydqz0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=762&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/82096/original/image-20150518-25407-1yydqz0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=762&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/82096/original/image-20150518-25407-1yydqz0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=957&fit=crop&dpr=1 754w, https://images.theconversation.com/files/82096/original/image-20150518-25407-1yydqz0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=957&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/82096/original/image-20150518-25407-1yydqz0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=957&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Jenny Kitzinger’s mother Sheila (left) and sister Polly (right) experienced very different end-of-life decision processes.</span>
<span class="attribution"><span class="source">Tess McKenny</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>My sister’s wishes were not recorded in a written Advance Decision. This meant that it was not possible to ensure that her own passionately expressed prior views were respected. </p>
<p>Whatever one’s own individual, family or cultural beliefs, a key question for us all is: “How can we ensure good care, including respect for our values, when we are at our most vulnerable – on the cusp between life and death?”</p>
<h2>Dying matters</h2>
<p>My family experiences underline my support for “<a href="http://www.dyingmatters.org/YODO">Dying Matters Awareness Week</a>”, which starts today. It also informs my professional involvement in a new cross-university initiative on: “Dying with reduced agency”. This brings together expertise from the universities of <a href="http://gw4.ac.uk/our-communities/">Cardiff, Bristol, Bath and Exeter (GW4)</a> to increase understanding of end-of-life issues.</p>
<p>Our key focus is on the end-of-life experiences of people whose ability to make, or enact, their own decisions has been compromised by, for example, dementia, brain injury or chronic conditions of advanced old age. </p>
<p>This is an increasingly important area of work. The ability of modern medicine to heal the body now exceeds its ability to save or restore the mind. The average age at death – and the number of older people dying – is dramatically increasing. But end-of-life care strategies have been led by cancer-related palliative care which often assume an autonomous individual freely choosing to live out a fairly predictable end-of-life process.</p>
<p>A <a href="http://www.theguardian.com/society/2013/jul/15/liverpool-care-pathway-independent-review">series of scandals</a> in hospitals and <a href="http://www.telegraph.co.uk/news/health/elder/10886947/Families-left-in-the-dark-about-care-home-dangers-Orchid-View-deaths-inquiry.html">care homes</a> reveals a failure to enable good deaths for many and a top-down approach in which patients, families and ground level staff struggle to be heard. </p>
<p>People with reduced agency are vulnerable to both under-treatment and over-treatment. This arises because of poor support and assumptions about their “quality of life” or simply because they are subject to decision-making that prioritises the goals of others.</p>
<p>Professional care providers can impose their own values on their patients. And organisations have institutional cultures, financial considerations, policies and strategies for managing risk that may cut across individual’s wishes. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/82049/original/image-20150518-25437-ir5oou.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/82049/original/image-20150518-25437-ir5oou.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/82049/original/image-20150518-25437-ir5oou.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/82049/original/image-20150518-25437-ir5oou.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/82049/original/image-20150518-25437-ir5oou.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/82049/original/image-20150518-25437-ir5oou.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/82049/original/image-20150518-25437-ir5oou.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">Taking control.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>Family members may find it difficult to represent relatives because they may not know their what their relative would want. And if they do, it might conflict with their own hopes and fears. My own <a href="http://www.healthtalk.org/peoples-experiences/nerves-brain/family-experiences-vegetative-and-minimally-conscious-states/family-experiences-decision-making">research</a> found that family members can also feel sidelined or silenced by clinicians.</p>
<p>In the UK, “<a href="http://www.stchristophers.org.uk/leaflet/frequently-asked-questions-about-%E2%80%98next-of-kin%E2%80%99-and-power-of-attorney">next of kin</a>” have no legal decision-making powers for other adults. However strongly a person believes that their family member would, for example, not want to be sustained in a long-term vegetative or minimally conscious state, they are not able to <a href="https://www.rcplondon.ac.uk/sites/default/files/annex_4b_role_of_family_and_friends_in_medical_decisions.pdf">refuse life-sustaining treatment</a> on their relative’s behalf. The only exception is if they have been formally appointed, in advance, as the person’s lasting power of attorney for health and welfare, with specific rights to make such decisions. </p>
<p>How we care for people with reduced agency is a complex and increasingly significant question. Radical new thinking is required to inform policy and practice. The GW4 initiative will include hosting an arts event and conference later this year and we are planning a major cohort study to examine people’s experiences at the end of life (and the views of their family and professional carers). </p>
<h2>Systemic change is needed</h2>
<p>We will be examining the significance of the place of care (for example: home, hospice and hospital), the diagnosis (such as dementia or acquired brain injury), and the way in which decisions are made. It is already clear, for example, that there have been failures to implement the <a href="http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/mental-capacity.aspx">Mental Capacity Act 2005</a>, which was designed to “empower and protect” people who lacked capacity to make some of their own decisions.</p>
<p>The 2014 <a href="http://www.publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/13902.htm">House of Lords post-legislative scrutiny committee</a> found that “prevailing cultures of paternalism (in health) and risk-aversion (in social care) have prevented the Act from becoming widely known or embedded. The empowering ethos has not been delivered”.</p>
<p>Systemic change is desperately needed. Meanwhile, each of us can try to protect ourselves and those around us by having honest conversations about death, recording our wishes in a legally binding <a href="http://compassionindying.org.uk/library/advance-decision-pack/">Advance Decision</a> or registering someone we trust as our lasting power of attorney <a href="https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/245571/LPA114_Health_welfare_LPA.pdf">for health and welfare</a>. </p>
<p>Many of us would rather not think about the end of life. But unless we do so, we risk having much worse deaths than necessary, and leaving family and friends burdened with guilt and regrets about the way we died.</p><img src="https://counter.theconversation.com/content/41843/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jenny Kitzinger receives funding from the ESRC, AHRC, Wellcome Trust, Rockefeller, Brocheur, government departments and a wide range of other funding bodies..</span></em></p>Systemic change is need to ensure that patients’ voices are heard when doctors make decisions about end-of-life care.Jenny Kitzinger, Co-Director of the Cardiff-York Chronic Disorders of Consciousness Research Centre, Cardiff UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/342332014-11-14T04:13:05Z2014-11-14T04:13:05ZShould people with acute mental suffering be allowed to die?<figure><img src="https://images.theconversation.com/files/64547/original/9n5vcvjd-1415935282.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Too stringent an approach to assisted dying risks locking people with mental illness out of the right to make decisions about the end of their lives.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/thomashawk/8129311815">Thomas Hawk/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc/4.0/">CC BY-NC</a></span></figcaption></figure><p>Euthanasia advocates often assert a distinction between dying with dignity (good) and suicide (bad), drawing on the community’s twin commitment to both <a href="http://www.theaustralian.com.au/news/latest-news/per-cent-support-voluntary-euthanasia-poll/story-fn3dxiwe-1225791455181?nk=017d5a37b677dfec62c82635d3f7b9b6">permitting euthanasia in some circumstances</a>, and <a href="http://suicidepreventionaust.org/about/">preventing suicide</a>. But rather than being distinct, euthanasia and suicide are points on a continuum of death decisions, that overlap uncomfortably where intractable mental suffering is asserted as grounds for assisted dying.</p>
<p>The tension between the two was played out this week in the Northern Territory, where the local Civil and Administrative Tribunal is considering whether to uphold the <a href="http://www.abc.net.au/news/2014-11-13/philip-nitschke-says-he-wishes-he-had-never-met-nigel-brayley/5887572">Medical Board of Australia’s suspension</a> of Philip Nitschke’s medical licence after a three-day hearing.</p>
<p>The suspension came after Nitschke <a href="http://www.abc.net.au/news/2014-07-03/nitschke-criticised-over-45yo-mans-suicide/5570162">discussed assisted suicide with 45-year-old Perth man Nigel Brayley</a> even though he knew Brayley did not have a terminal illness. Brayley reportedly told Nitschke in an email that he was “suffering” in the sense that he was deeply unhappy in his life. Nitschke did not refer to him to a psychiatrist or offer any other help.</p>
<h2>More complex than it appears</h2>
<p>Nitschke’s actions have been roundly criticised, particularly <a href="http://www.theguardian.com/commentisfree/2014/jul/24/philip-nitschke-should-not-be-the-sole-face-of-the-euthanasia-movement">by other euthanasia advocates</a>, who seek to distance themselves from existential justifications for assisted suicide. However the idea that euthanasia should not be offered for mental suffering is not universally agreed, and requires some further consideration. </p>
<p>In the Netherlands and Belgium where euthanasia is legal, assisted dying for emotional suffering is permitted. Approval will only be granted where where applicants are of age, mentally competent and their suffering constitutes an “incurable condition” that causes continuous and unbearable anguish.</p>
<p>Of the <a href="http://www.bbc.com/news/world-europe-24373107">1,432 recorded cases of euthanasia</a> in Belgium in 2012, 52 were on psychological grounds. <a href="http://www.euthanasiecommissie.nl/overdetoetsingscommissies/jaarverslag/">In the Netherlands</a>, the figure was 42 out of a total of 4,829 cases in 2013.</p>
<p>Still, the idea – and practice – remains deeply controversial. Concern often focuses on a lack of confidence in the notion that mental illness or emotional pain should ever be regarded as “incurable”. A troubling question then arsies as to whether we might be too carelessly priviliging the right to autonomy, and undermining our <a href="http://www.salon.com/2013/10/07/euthanasia_for_emotional_pain_mercy_or_a_culture_of_death/">responsibility to protect vulnerable people</a> from harm. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/64546/original/f6pvxmjh-1415935090.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/64546/original/f6pvxmjh-1415935090.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=403&fit=crop&dpr=1 600w, https://images.theconversation.com/files/64546/original/f6pvxmjh-1415935090.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=403&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/64546/original/f6pvxmjh-1415935090.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=403&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/64546/original/f6pvxmjh-1415935090.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=506&fit=crop&dpr=1 754w, https://images.theconversation.com/files/64546/original/f6pvxmjh-1415935090.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=506&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/64546/original/f6pvxmjh-1415935090.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=506&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">There’s concern about the confidence with which we can say that mental illness or emotional pain should be regarded as ‘incurable’.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/porsche-linn/5561412422">Porsche Brosseau/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Others have suggested that if we extend the right to die beyond those who are actually already dying, we risk setting off down a “<a href="http://www.nbcnews.com/news/other/painless-death-or-precipitous-cliff-transsexual-chooses-euthanasia-after-failed-f8C11339134">very dangerous path and one that’s extremely slippery</a>”. This worry seems to be that we slide into a situation in which marginalised and vulnerable people’s right to life will not be sufficiently protected. </p>
<h2>A fine line</h2>
<p>But too stringent an approach risks locking people with mental illnesses out of the right to make decisions about the end of their lives – and this might be discriminatory.</p>
<p>In a troubling <a href="http://www.bailii.org/ew/cases/EWHC/COP/2012/1639.html">2012 UK case</a>, for instance, a hospital was ordered to cease a palliative care program consented to by a 32-year-old woman with anorexia nervosa and to forcibly re-feed her despite her deep distress at the prospect. The woman had consistently refused re-feeding over the past several years, experiencing it as a violent assault. </p>
<p>The court decided the fact that she had an eating disorder made her <a href="https://theconversation.com/force-feeding-anorexic-patient-curbs-freedom-of-choice-7815">incompetent to make a legally enforceable decision to refuse treatment</a>. The implication of the decision was that, by definition, people with anorexia cannot make an end-of-life decision, no matter how harrowing and intractable their illness becomes. </p>
<p>It was a conclusion that bitterly disappointed the woman’s parents, who said:</p>
<blockquote>
<p>It seems strange to us that the only people who don’t seem to have the right to die when there is no further appropriate treatment available are those with an eating disorder. </p>
</blockquote>
<p>Nitschke may well have made errors in his assessment of Brayley. These will be considered by the tribunal. But he had a reasonable point when he said that he had suffered a “political deregistration” because “a government board … doesn’t agree with the beliefs of its citizens”. Certainly there are a range of defensible views on what is a good life and when assisted dying is acceptable. In any case, the fact remains that assisted dying for mental suffering is a long way from achieving broad acceptance in Australia. </p>
<hr>
<p><em>If you have depression or feel very low, please seek support immediately. For support in a crisis, contact <a href="https://www.lifeline.org.au/">Lifeline</a> on 13 11 14. For information about depression and suicide prevention, visit <a href="http://www.beyondblue.org.au/">beyondblue</a>, <a href="http://www.sane.org/">Sane</a> or <a href="http://www.samaritans.org/">The Samaritans</a>.</em></p><img src="https://counter.theconversation.com/content/34233/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sascha Callaghan 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>Euthanasia advocates often assert a distinction between dying with dignity (good) and suicide (bad), drawing on the community’s twin commitment to both permitting euthanasia in some circumstances, and…Sascha Callaghan, Lecturer in Health Law & Bioethics, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/194422013-11-18T19:18:07Z2013-11-18T19:18:07ZAnother voluntary euthanasia bill bites the dust<figure><img src="https://images.theconversation.com/files/35284/original/wnsk7m42-1384406649.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Opinion polls consistently indicate majority public support for legalisation of voluntary euthanasia.</span> <span class="attribution"><span class="source">Lee Haywood</span></span></figcaption></figure><p>When it comes to legislating voluntary euthanasia in Australia, success is rare and short lived. </p>
<p>The Tasmanian <a href="http://www.parliament.tas.gov.au/bills/pdf/61_of_2013.pdf">Voluntary Assisted Dying bill</a> is the latest such piece of euthanasia legislation to be defeated. It was ultimately voted down, although it was close – 13 to 11 votes. </p>
<p>The outcome was a great disappointment to many: opinion polls consistently indicate <a href="http://www.dwdnsw.org.au/documents/2013/POLL%20WHITE%20PAPER%202012.pdf">majority public support</a> for legalisation of voluntary euthanasia. So, why are our legislators not representing public opinion?</p>
<p>Tasmanian members of parliament were allowed a conscience vote on the bill. All of the Tasmanian Green members of parliament supported the legislation, as did the majority of the Labor members (only three Labor members voted against it). </p>
<p>Notably, all Liberal members voted against the bill. This was also the case with a 2009 Tasmanian bill, <a href="http://www.parliament.tas.gov.au/bills/Bills2009/pdf/37_of_2009.pdf">Dying with Dignity</a>. </p>
<h2>Other attempts</h2>
<p>Other Australian jurisdictions have seen the same voting patterns. For example, earlier this year, a similar bill proposing assisted voluntary euthanasia – <a href="http://www.austlii.edu.au/au/legis/nt/consol_act/rottia294/">Rights of the Terminally Ill</a> – was defeated in the NSW Parliament’s upper house by a far greater margin (23-13).</p>
<p>After the defeat, the sponsor of the bill, Cate Faehrmann, expressed her <a href="http://catefaehrmann.org/2013/05/">bitter disappointment</a>:</p>
<blockquote>
<p>…and with the MPs who I know support reform but chose to abstain or vote against the bill for political reasons. Outrageously, not a single Coalition member voted in favour of the bill. It was hard to believe it was a conscience vote. Clearly pressure was placed on some members to not support my bill.</p>
</blockquote>
<p>A <a href="http://www.austlii.edu.au/au/legis/nt/consol_act/rottia294/">Northern Territory bill</a> was passed in 1995 but then controversially overridden by <a href="http://www.comlaw.gov.au/Details/C2004A05118">Commonwealth legislation</a> the following year. </p>
<p>All other legislative attempts in Australia have also failed, but some have come closer than others. </p>
<p>South Australia looks to be the next state to consider a vote on euthanasia legislation, with the <a href="http://www.austlii.edu.au/au/legis/sa/bill/elwdb2013243/">Ending Life with Dignity</a> bill. </p>
<p>If an Australian state – as distinct from a territory – were to pass voluntary euthanasia legislation, there would be no valid constitutional basis for the Commonwealth parliament to override it, as it did to the Northern Territory bill 1996.</p>
<h2>Means and ways</h2>
<p>Each of the proposals that have been put forward had different specifications. </p>
<p>The recent Tasmanian bill, for instance, provided for voluntary euthanasia, where a doctor is directly involved and assists with the termination of life. </p>
<p>The bill also provided for doctor-assisted suicide, where a physician only provides a prescription and is present while a patient administers the medication.</p>
<p>In contrast, the NSW Rights of the Terminally Ill bill only aimed to make doctor-assisted suicide legal. An exception was made for people who are mentally competent but physically incapable of self-administering, who would require a doctor to actively administer any drugs for them.</p>
<p>Proposals for <a href="http://www.legislation.sa.gov.au/LZ/B/ARCHIVE/CRIMINAL%20LAW%20CONSOLIDATION%20(MEDICAL%20DEFENCES%20-%20END%20OF%20LIFE%20ARRANGEMENTS)%20AMENDMENT%20BILL%202011_HON%20STEPH%20KEY%20MP/B_AS%20INTRODUCED%20IN%20HA/CRIMINAL%20ARRANGEMENTS%20AMENDMENT%20BILL%202011.UN.PDF">decriminalising</a> voluntary euthanasia, without making the practice “legal”, have also been put forward.</p>
<p>In the United States, two states – Washington and Oregon – have both successfully enacted assisted-dying legislation. In these instances, the legislation came about as a result of a citizen-initiated referendum process available in those states. </p>
<p>The Netherlands and Belgium have also legalised active voluntary euthanasia. In those countries, the political situation is quite different to Australia. There, multi-party systems have resulted in a more diverse parliamentary mix, that potentially allows for a less politicised process on such issues.</p>
<h2>Reconceptualising the debate</h2>
<p>It’s difficult to understand why, in the face of strong public support, it’s so difficult to pass voluntary euthanasia legislation in Australia, irrespective of the model or quality of the safeguards.</p>
<p>Efforts to champion the cause have come from both doctors and advocacy groups, <a href="http://www.christiansforve.org.au">some religious</a>. </p>
<p>But these tend to be lonely voices in a debate dominated by a vocal minority. Opposition groups, particularly those of a religious nature, have been very vocal and effective in mobilising.</p>
<p>In reality, it’s not a question of whether we begin to allow euthanasia. Rather, it’s whether we are honest about the fact that it already occurs. </p>
<p><a href="http://rechtensamenlevingdotorg.files.wordpress.com/2012/03/rdw2001-3-regulating-physician-negotiated-death.pdf">Evidence indicates</a> active voluntary euthanasia already being practised in Australia. But the hidden and unregulated nature of the practice leaves both doctors and patients exposed to risk. </p>
<p>Where the practice is prohibited, there’s greater risk of active termination of life without a patient’s request. This lies in stark contrast to countries such as The Netherlands, where voluntary active euthanasia has been legalised but carefully regulated.</p>
<p>Legislation with appropriate safeguards is essential to promote patient autonomy as well as safety.</p>
<p>As the bill’s author, Tasmanian Premier Lara Giddings noted in the aftermath of the defeat of the bill, achieving major social change is always an incremental process. Eventually though, the overwhelming tide of public support for change must surely be acted upon.</p><img src="https://counter.theconversation.com/content/19442/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Margaret Otlowski 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>When it comes to legislating voluntary euthanasia in Australia, success is rare and short lived. The Tasmanian Voluntary Assisted Dying bill is the latest such piece of euthanasia legislation to be defeated…Margaret Otlowski, Professor, Faculty of Law, University of TasmaniaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/172382013-08-20T05:42:26Z2013-08-20T05:42:26ZDignitas case raises tough questions over right to die and duty to protect<figure><img src="https://images.theconversation.com/files/29536/original/t3krj3p6-1376917363.jpg?ixlib=rb-1.1.0&rect=256%2C210%2C3239%2C2214&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Dignitas isn't for everyone but it's a compassionate response for some.</span> <span class="attribution"><span class="source">Unhindered by Talent</span></span></figcaption></figure><p>Hard cases, it has been said, make bad law. They also prompt us to ask deeper questions about wider causes and longer term ethical consequences - and this is particularly pressing when it comes to assisted dying. </p>
<p>It was reported at the weekend that a woman and her son had been <a href="http://www.bbc.co.uk/news/uk-england-sussex-23746244">arrested for planning</a> to take a “vulnerable” 71-year-old relative to the Dignitas clinic in Switzerland to avail of its assisted dying facilities. Although more details have yet to emerge, it may be yet another case that demonstrates the complexity of our decisions around death.</p>
<p>Attempts to change the law have certainly become more concerted. The three cases of Paul Lamb, the late Tony Nicklinson and “Martin” were unsuccessful. Reports of legal challenges and of “death/suicide tourism” also raise questions about the most compassionate responses to the suffering of individuals and the most appropriate means to protect patients.</p>
<h2>Hard cases</h2>
<p>Paul Lamb has been paralysed since 1990, and is reportedly in constant pain. He has said he feels trapped with no way out. He wants the law changed so that a doctor who helped him to die would not be prosecuted, using <a href="http://uk.news.yahoo.com/paul-lamb-right-to-die--assisted-suicide-history-tony-nicklinson-debbie-purdy-113312330.html#2ZzqXfQ">a defence of necessity</a>. This recognises that there may be situations of overwhelming urgency that could allow for a person to react by breaking the law. </p>
<p>Tony Nicklinson, who died soon after his case was rejected in the High Court in 2012, had locked-in syndrome. His wife, who continues to challenge the ruling against doctor-assisted dying, <a href="http://www.thesiasat.com/2013/07/31/right-to-die-man-awaits-court-ruling/">said</a> “every day waking up was torture for him”. </p>
<p>Martin (not his real name) is also paralysed and <a href="http://www.theguardian.com/society/2011/aug/18/man-in-assisted-suicide-case">wants a change in the law</a> so a health professionals could accompany him to a suicide clinic in Switzerland without fear of prosecution.</p>
<h2>Why now?</h2>
<p>One reason more attention is being paid to right-to-die cases is our increased acknowledgement of individual autonomy. Gone are the days when patients deferred to professionals and agreed with any end of life option they proposed. People may also doubt the ability of palliative care services to ensure a good death (particularly following <a href="http://www.theguardian.com/society/2013/jul/15/liverpool-care-pathway-independent-review">the high profile recent demise</a> of the Liverpool Care Pathway, which provided <a href="https://theconversation.com/death-pathway-label-does-little-to-help-the-dying-14383">guidance on care</a> of the dying). And people may also see changes in the law in other European countries on euthanasia and assisted dying that don’t appear to be undermining the ethical values of these civilised states. </p>
<p>On the other hand, we have to be cautious about the “Alzheimerisation” of the euthanasia debate, where it’s proposed <a href="http://www.deakin.edu.au/news/2013/240413alzheimersandeuthanasia.php">as a legitimate treatment</a> option. It’s a valid concern and we need to guard against any ethical erosion should assisted dying be legalised. Concern about resources shouldn’t weaken our duty to safeguard individuals.</p>
<h2>Hard choices</h2>
<p>Views of assisted dying are also informed by personal experience. Three very different experiences come to mind. One man I talked with recently told me about his mother who was paralysed and totally dependent on the help of carers. He said that she felt that her body felt like “a prison”. He supported assisted dying and the best he could hope for now, given the legal situation, was that his mother would die from a chest infection. “There are worse things than death,” he said. </p>
<p>In the course of my research examining ethical aspects of social care, I talked with a woman who worked in a dementia care home. She was passionate about her work and convincingly described the positive difference that good care makes to residents’ quality of life. She thought assisted dying was “unethical”. </p>
<p>Many years ago, I found myself sitting beside a man on a daytime television discussion about euthanasia who had smothered his terminally ill wife because, he said, her suffering was intolerable and he could see no alternative.</p>
<h2>Civilised society</h2>
<p>The current UK legal situation suits many people but drives some others to despair or to desperate measures. </p>
<p>The discussion generally focuses on the needs and rights of individuals. We are, it has been suggested, an autonomy-focused society so we should have more rights over our lives and bodies. </p>
<p>On the face of it, requests for a doctor-assisted death or accompaniment to a clinic in Switzerland without fear of prosecution for helpers, seems reasonable. Surely we can agree that the sign of any civilised society is that it enables a compassionate response to suffering; a just response to those who lack the physical capability to make the ultimate choice to live or die that is available to the able-bodied; and a cautious response to safeguard the rights and interests of those involved?</p>
<p>People need to be protected so their end of life choices are voluntary and not coerced. We can’t assume that families and friends will always prioritise the best interests of vulnerable individuals. </p>
<p>The interests of professionals also need to be protected and any legislative changes would need to include a conscientious objection clause, to allow individuals to opt out. We need then to proceed cautiously and ensure that we continue to develop the best palliative and dementia care services possible. </p>
<p>The debate needs to move beyond hard cases and to engage head on with the issues that undermine the quality of care for people at the end of life. This includes more ethics education for health professionals and engaging a generally devalued workforce.</p>
<p>We need also to be honest enough to admit that what we might wish for ourselves at the end of life, when all care options have been exhausted, shouldn’t be denied to others. This means prioritising compassion and justice, and safeguarding the interests of our most vulnerable fellow citizens. But it has to be balanced with an awareness of paternalism and over-protectiveness that in the end may undermine us all.</p><img src="https://counter.theconversation.com/content/17238/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ann Gallagher 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>Hard cases, it has been said, make bad law. They also prompt us to ask deeper questions about wider causes and longer term ethical consequences - and this is particularly pressing when it comes to assisted…Ann Gallagher, Reader in Nursing Ethics, University of SurreyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/153602013-07-26T05:32:58Z2013-07-26T05:32:58ZLack of clarity undermines bill that would help people die<figure><img src="https://images.theconversation.com/files/27402/original/k24xwpj5-1373648151.jpg?ixlib=rb-1.1.0&rect=13%2C227%2C4587%2C2993&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The bill fails to tackle discrimination in end of life care that would have helped Tony Nicklinson.</span> <span class="attribution"><span class="source">PA/Emma Hallett</span></span></figcaption></figure><p>Lord Falconer’s <a href="http://www.bbc.co.uk/news/uk-politics-22432308">assisted dying bill</a> would allow registered doctors to take steps to help mentally competent adult patients to end their own lives, but only in certain circumstances. </p>
<p>One of these circumstances is when someone is deemed to be “terminally ill”. Other forms of assisted dying, such as euthanasia, aren’t included so any law would not help <a href="http://www.bbc.co.uk/news/uk-england-19341722">people like Tony Nicklinson</a>, who fought for the right for doctors to legally end his life after he acquired locked-in syndrome.</p>
<p>The bill emerged from recommendations made by the independent Commission on Assisted Dying following an extended process of public consultation and hearings. The aim of the new legislation is to regulate assisted suicide and address the “<a href="http://bit.ly/15RfLwi">inadequate and incoherent</a>” legal status quo in end of life care.</p>
<p>But the bill, unlikely to get a second reading until Parliament reconvenes in September, smacks of compromise - it is neither adequate nor coherent in its current form. </p>
<p>Some of the concepts put forward in the bill are poorly defined or articulated. And the distinctions made between what a doctor can and cannot do if assisting someone to die fail to differentiate appropriately between assisted suicide and other actions to end patients’ lives. </p>
<h2>What counts as a terminal illness?</h2>
<p>One of the clearest examples of the poor drafting revolves around the definition of a “terminal illness”. According to the bill, a person with a terminal illness is someone diagnosed as having an “inevitably progressive condition” which cannot be reversed by treatment. </p>
<p>While “treatment” is defined as an intervention that cannot reverse that condition, no definition of an “inevitably progressive condition” is provided. On this account, any adult with a progressive neurological condition, such as dementia or motor neurone disease, could have a terminal illness.</p>
<p>Ironically, while having a terminal illness, these adults might not be terminally ill. This is because being terminally ill, according to the bill, requires that an adult with a terminal illness is reasonably expected to die from that illness within six months. Presumably, those adults who are not able to obtain that reasonable expectation from their doctor can do little more than to count down the days until they come within its remit.</p>
<p>It is charitable to suggest that these conceptual problems show that the bill has been poorly drafted. </p>
<p>More troubling, concepts like “terminally ill” and “inevitably progressive condition” seem to be invoked in order to foreclose on moral distinctions and judgements that haven’t been clearly defended, and which may not stand up to scrutiny.</p>
<h2>An arbitrary six months to live</h2>
<p>Other than copying the standards of <a href="http://1.usa.gov/fUTK5l">Oregon’s Death with Dignity Act</a>, which allows terminally-ill Oregonians to end their lives through voluntarily self-administrating lethal drugs prescribed by a doctor, there looks to be no good reason for putting forward the “six months to live” limit. </p>
<p>In <a href="http://www.demos.co.uk/publications/thecommissiononassisteddying">their final report of 2012</a>, the commission itself suggested that new legislation should extend to those patients who will die “within the next 12 months”. Any time restriction - be it six months, 12 months or any other cut-off point - seems rather arbitrary, particularly in the light of the uncertainty about the predictability of death. </p>
<p>This time restriction also isn’t ethically relevant to the main arguments often used to support legislation on assisted dying. If the commission wanted, as it claimed, to support a self-determined death, there seems to be no reason why the right to self-determination should be limited only to people who are reasonably expected to die within a short period. </p>
<p>Nor, it might be claimed, should the law be blind to considerations about a person’s quality of life and/or suffering as criteria for allowing assistance to a person to commit suicide.</p>
<h2>Active patient, passive doctor?</h2>
<p>In its report, the Commission said it didn’t want “any form of euthanasia” to be permitted and emphasised the active role of a patient who needs “to be able to take the action that will cause their death”. This corresponds with the bill’s call for the passive role of the doctor who isn’t authorised “to administer a medicine … with the intention of causing [another] person’s death”. </p>
<p>Yet, it’s clear that doctors must take active steps to prescribe, deliver, prepare and, in some cases, assist the person to ingest the drug that will end their life. </p>
<p>Quite apart from the practical difficulty in separating acts of administration from acts of mere assistance, this line in the sand ensures that the legislation offers nothing for those adults like Tony Nicklinson who require more from doctors. Organisations such as the British Humanist Association have been <a href="http://bit.ly/1aXTVw1">vocal in their criticism</a> of this position.</p>
<p>Rather than help, these arbitrary distinctions that limit the scope of doctors’ actions act against the core principle of ending all forms of discrimination in end of life care that formed part of the commission’s final report.</p>
<h2>The bill needs to be clearer</h2>
<p>As with all public engagement exercises, the process of translating a range of evidence into core principles and a draft piece of legislation has led to significant problems. Concepts are defined in ways that don’t stand up to scrutiny, and moral judgements are imposed in ways that diverge from the main reasons given to support changes in the law at the end of life. </p>
<p>The parliamentary process must focus on these issues and ensure that they are addressed directly.</p><img src="https://counter.theconversation.com/content/15360/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mark Sheehan is supported by the Oxford NIHR Biomedical Research Centre.</span></em></p><p class="fine-print"><em><span>Ruth Horn receives funding from the Wellcome Trust.</span></em></p><p class="fine-print"><em><span>Michael Dunn 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>Lord Falconer’s assisted dying bill would allow registered doctors to take steps to help mentally competent adult patients to end their own lives, but only in certain circumstances. One of these circumstances…Mark Sheehan, Research Fellow, University of OxfordMichael Dunn, Lecturer in Health and Social Care Ethics, University of OxfordRuth Horn, Wellcome Trust Research Fellow, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/136532013-05-07T05:16:44Z2013-05-07T05:16:44ZSafe assisted dying laws are possible, so let’s make them<figure><img src="https://images.theconversation.com/files/23276/original/hsnqf575-1367821578.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Paying attention to the interests of the elderly and disabled people ensures we use appropriate eligibility criteria in euthanasia legislation.</span> <span class="attribution"><span class="source">SalFalko/Flickr</span></span></figcaption></figure><p>A <a href="http://www.australia21.org.au/our_research/assisted_death.html#a">report we recently prepared</a> with independent think tank Australia21 calls for state governments to institute laws allowing and regulating voluntary euthanasia and assisted suicide – in defined and limited circumstances. In the report, we confront the idea that such laws pose risks to vulnerable people, such as the elderly and people with disabilities. We argue that safeguards can ensure the law is only used by those it’s intended for.</p>
<p>Safeguards have been a prominent issue in both the voluntary euthanasia debate and in efforts to implement related laws. Some politicians think it’s not possible to design laws that protect vulnerable groups. This position is also linked to “in principle” objections to voluntary euthanasia. </p>
<p>Even politicians open to a change in the law may feel concerned about how risks are addressed. They would presumably be prepared to consider models of reform that focus on protecting people with disabilities and the elderly.</p>
<p>In the 1990s, a number of parliamentary committees considering voluntary euthanasia and assisted suicide laws found that developing adequate safeguards was problematic. In 1994, the UK’s House of Lords Select Committee on Medical Ethics <a href="http://pmj.sagepub.com/content/19/6/444.refs">concluded that</a> it would be “virtually impossible to ensure that all acts of euthanasia were truly voluntary and that any liberalisation of the law … could not be abused”. A Tasmanian parliamentary committee <a href="http://www.parliament.tas.gov.au/ctee/old_ctees/euth.htm">reached a similar view</a> in 1998. </p>
<p>But a body of international experience with assisted dying regimes has emerged since, including legislation in Oregon (1997) and the Netherlands and Belgium (2002). Although there have been critiques of these regimes and how they operate, there’s now a body of reputable empirical evidence that concludes they’re generally operating as designed and within the scope of relevant laws. </p>
<p>So concerns about widespread abuse of voluntary euthanasia and assisted suicide laws appear to be unfounded. </p>
<p>There are now also a number of reports from parliaments around the world concluding that safe reform is possible. This was the view of the <a href="http://www.assnat.qc.ca/en/actualites-salle-presse/nouvelle/actualite-25939.html">Quebec Select Committee on Dying with Dignity</a> in 2012 and the position taken in Tasmania by the premier, Lara Giddings, and leader of the Greens, Nick McKim, in their 2013 <a href="http://www.premier.tas.gov.au/__data/assets/pdf_file/0007/185578/Voluntary_Assisted_Dying_-_A_Proposal_for_Tasmania.pdf">consultation paper</a>. </p>
<p>So we now have evidence that legislative safeguards can be drafted to ensure only patients who are “eligible” can receive legal assistance to die. </p>
<p>Depending on the design of the legislative framework, this could mean voluntary euthanasia or assisted suicide is available only to competent terminally ill adults who can make a voluntary and informed request for assistance to die. These criteria can be enforced through processes such as the provision of information, obtaining a second medical opinion and cooling-off periods. The effective operation of a regime can also be overseen by an independent monitoring body.</p>
<p>None of this should be taken as saying that concern for vulnerable people is not an important consideration. It is. And it is especially so when drafting voluntary euthanasia and assisted suicide legislation. Paying attention to the interests of the elderly and disabled people actually ensures we use appropriate eligibility criteria in the legislation. And that those criteria are supported by robust procedural safeguards as well as effective and independent oversight mechanisms.</p>
<p>It’s possible to have the best of both worlds – a regulated voluntary euthanasia and assisted suicide law that protects the interests of vulnerable groups. We can draft legislation that permits choice for those whose suffering we cannot help as well as valuing and safeguarding vulnerable people in our community.</p><img src="https://counter.theconversation.com/content/13653/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ben White is co-author of the Australia21 report 'The right to choose an assisted death: Time for legislation?'.</span></em></p><p class="fine-print"><em><span>Lindy Willmott is co-author of the Australia21 report 'The right to choose an assisted death: Time for legislation?'. </span></em></p><p class="fine-print"><em><span>Robert Douglas does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A report we recently prepared with independent think tank Australia21 calls for state governments to institute laws allowing and regulating voluntary euthanasia and assisted suicide – in defined and limited…Ben White, Professor of Law and Director, Health Law Research Centre, Queensland University of TechnologyLindy Willmott, Professor of Law, Queensland University of TechnologyRobert Douglas, Emeritus Professor National Centre for Epidemiology and Population Health, Australian National UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/137102013-04-28T20:07:09Z2013-04-28T20:07:09ZA conversation that promises savings worth dying for<figure><img src="https://images.theconversation.com/files/22921/original/pndjgs4q-1366959342.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">We require the largest amount of health-care dollars in the last 30 days of our life.</span> <span class="attribution"><span class="source">Lee Haywood</span></span></figcaption></figure><p>On the eve of a federal budget looking for savings, I would like to report a medical intervention that reduces suffering, can prolong life and dramatically reduces health-care costs. The intervention itself costs nothing. But first, a story.</p>
<p>Jim was 78 when, on an empty road, he drove his car at 100 kilometres an hour into a tree. Maybe he’d had a minor stroke – he’d certainly had others due to vascular disease brought on by a lifetime of smoking. He was badly injured – limbs, pelvis, chest, intestines – and, on paper, had no chance of survival. His doctors had two options.</p>
<p>a) Talk to his family, establish any wishes or preferences Jim had expressed, assure them that he would receive the best of comfort measures and allow him to die in a quiet room.</p>
<p>b) Operate on all the fractures and ruptures, keep Jim on a ventilator in an intensive care unit for a month (during which time he would have more money spent on his health care than he had contributed in a lifetime via the Medicare Levy) and hope that he would beat the odds. </p>
<p>He didn’t. I know because we chose b. Or rather, in the absence of a conscious effort to choose anything, b just happened. In acute care (where Jim arrived after his accident), heroic management is the default setting.</p>
<p>This “do everything default” is a heady mix of historical, ethical and legal elements. It includes acting under the principle of necessity (the notion of “emergencies”), technical imperatives (a belief that because we have the technology we are obliged to use it in all cases) and medical imperatives. These are unnuanced notions of duty rooted in a parentalistic version of beneficence - medical ethics reduced to a bumper sticker.</p>
<p>It takes about one minute to treat a patient according to the standard default (admit-operate-ICU), and about two and a half hours to have a proper discussion with the medical teams, the patient and the family. It’s not surprising that the default generally wins out.</p>
<p>The truth is dying is not only scary but also scarily expensive. It’s widely known that the last year of our lives is when the most health-care dollars are spent. It’s less well-known that essentially all of this is <a href="https://www.mja.com.au/journal/2007/187/7/hospital-costs-older-people-new-south-wales-last-year-life">spent in the last 30 days</a> of someone’s life. </p>
<p>As in a war, it’s the last, futile battle that is the most costly, in a number of ways. Because the costs of dying come in many forms – financial, opportunity, emotional and physical, all borne variously by the individual, the family and society.</p>
<p>Though not all of us are destined to die like Jim, most Australians will <a href="https://www.mja.com.au/journal/2011/194/11/hospital-and-emergency-department-use-last-year-life-baseline-future">die in acute care hospitals</a>, and almost all will be <a href="http://www.publish.csiro.au/paper/AH11125.htm">suffering from chronic, incurable diseases</a>. Which is, of course, not a good fit for an acute care system founded on the duty to rescue and to cure at all costs. </p>
<p>This modern conundrum arose from the rapidly shifting demographic: as we die at an older age, so we die of relapsing chronic diseases. And each relapse results in an admission to an acute care hospital, where we ultimately die.</p>
<p>At the same time as this demographic shift, we have seen the rise of patient autonomy – all previous notions of “best interests” and “futility” now are largely resolved around establishing what the patient would have wanted. Talking to patients and their families, and taking into account their wishes is now an expected part of health care. </p>
<p>Before 1980, medicine largely revolved around a “doctor-knows-best” approach. The notion that decisions were to be negotiated with patients and their families started with a series of high-profile legal cases in the United States. The first “Do Not Resuscitate” orders appeared in the late 1970s, and the first mention of “informed consent” was in 1980.</p>
<p>Acute care hospitals are ill-prepared for this new role as the default place of death for the elderly; few have any systems in place to recognise the signs of dying early enough to have chance to provide palliation. Indeed, for two-thirds of the people receiving acute care, dying is only <a href="http://www.publish.csiro.au/paper/AH11125.htm">recognised on the last day of life</a>. Nor are attempts routinely made to establish what the wishes of the patient would have been. </p>
<p>There’s now abundant evidence to back up the extravagant claims I made at the start of this article – we can prove that talking to patients and their families <a href="http://www.bmj.com/content/340/bmj.c1345">reduces stress</a>, that dying outside an intensive care unit is <a href="http://www.ncbi.nlm.nih.gov/pubmed/21612730">cheaper and less painful</a>, that cancer patients managed palliatively may <a href="http://pallcare.ru/File/NEJMoa1000678.pdf">out-survive those treated more aggressively</a>, and that talking about death in advance is <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2862687/">associated with both</a> lower cost of dying and a better death.</p>
<p>So what is this is this marvellous, free medical intervention? Maybe you have guessed by now – it’s just having a conversation. A conversation that starts when you are in your final years, that asks about your goals, and about who would speak for you if (and when) you lost the capacity to speak for yourself. A conversation that continues through hospital admissions, where your doctors and nurses expect to work with you, as well as for you.</p>
<p>This conversation rarely happens without support. The success of the <a href="http://www.respectingpatientchoices.org.au/index.php?option=com_content&view=article&id=7&Itemid=8">Respecting Patient Choices</a> program, which takes a systematic approach to initiating this conversation in both acute and residential care, is due the way it trains people to introduce and continue this dialogue. </p>
<p>Clearly any conversation needs two sides. We need to understand that our deaths will not be with a bang but with a series of diminishing whimpers. We can all start now: ask yourself “who will speak for me when I can’t speak for myself?” Then “what do I need to say to this person?” The role of acute care is to systematically pick up this conversation, to routinely ask for this information, and to have ways to translate this into forms intelligible to the acute care system.</p>
<p>It’s the eve of a federal budget. You can almost hear the snap of the public purses closing all over Australia. There is a win–win out there, a conversation that can improve care and save an enormous amount of money. Can we afford silence?</p>
<p><strong><em>This is the third part of our series <a href="https://theconversation.com/topics/health-rationing">Health Rationing</a>. Stay tuned for more articles in the lead up to the May budget and click on the links below:</em></strong></p>
<p><strong>Part one:</strong> <a href="https://theconversation.com/tough-choices-how-to-rein-in-australias-rising-health-bill-13658">Tough choices: how to rein in Australia’s rising health bill</a><br> <strong>Part two:</strong> <a href="https://theconversation.com/explainer-what-is-health-rationing-13667">Explainer: what is health rationing?</a><br>
<strong>Part four:</strong> <a href="https://theconversation.com/phase-out-gp-consultation-fees-for-a-better-medicare-13690">Phase out GP consultation fees for a better Medicare</a><br>
<strong>Part five:</strong> <a href="https://theconversation.com/focus-on-prevention-to-control-the-growing-health-budget-13665">Focus on prevention to control the growing health budget</a></p><img src="https://counter.theconversation.com/content/13710/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Peter Saul 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>On the eve of a federal budget looking for savings, I would like to report a medical intervention that reduces suffering, can prolong life and dramatically reduces health-care costs. The intervention itself…Peter Saul, Senior Specialist in Intensive Care and Head of Clinical Unit in Ethics and Health Law, University of NewcastleLicensed as Creative Commons – attribution, no derivatives.