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Tragic flaw sees man use voluntary assisted dying drugs prescribed for his wife

Warning: This article contains discussions of suicide and depression that some readers may find upsetting A Queensland coroner has criticised the state's voluntary assisted dying laws, after an elderly man took his own life using drugs prescribed for his wife. The Coroner's Court in Brisbane held an inquest into the May 2023 death of a man in his 80s, referred to by the pseudonym ABC. The man's partner, who had a terminal illness, was found eligible for the voluntary assisted dying [VAD] program in March 2023. Under that law a person can self-administer a VAD substance in a private location but they must nominate a "contact person" who will be legally required to return any unused or leftover portion within 14 days. The self-administered drug was delivered to the couple's home a month later, and the man was the "contact person" responsible for the substance. On the same day the drug arrived, his wife was admitted to hospital with Covid, where they decided to take an intravenous VAD drug. She died in hospital on May 8, 2023. The man was told to return the drug within two days of his partner's death, but he failed to do so, using it to take his own life eight days later. He did not return the drug as he was unable to leave his home, and there was no arrangement made for a health professional to collect it. ABC’s adult daughter recalled the moment she found her lifeless father after returning from running errands. “I thought he was asleep in the chair. I put my arms around him. He was cold,” she told the inquest. The woman became emotional and said that she found an empty box in the kitchen and “knew immediately it was the VAD”. In his findings, coroner David O’Connell said he was not judging the merits of VAD, but it had led to a "tragedy" only 107 days after it was legalised. “Persons should not be placed in a position where they can be led into unwise decisions,” the coroner said in his findings handed down on Wednesday. O'Connell said that the laws had failed to find a balance between a patient's autonomy and lethal medication safety. “The VAD law has (the substance) provided to persons with no medical training, no regulatory oversight, and in a period of great personal and emotional turmoil,” he said. The inquest heard ABC had previously been diagnosed with, and received medication for depression, which should've been considered before approving someone as a contact person. "The fact that ABC had been medically diagnosed with depression and took medication was not something the VAD authorities considered, or even enquired on, when approving them to be a Contact Person. Indeed, there are simply no checks or enquiries of the Contact Person's suitability," he said. He added that while there was no breach of protocol or legislative processes by QVAD personnel, it was "not a well-considered law". O'Connell recommended the Queensland government implement an earlier draft of VAD laws that required oversight by a medical professional at all times. Queensland Health Minister Shannon Fentiman said the government would consider the coroner’s recommendations. “Following that case, we are working on a review of that legislation coming up to three years that will start next year, and that will obviously be one of the things that we look at,” she said. Image: Shutterstock

Caring

"I don't call that a life": Couple sign up to die in double suicide pod

Warning: This article contains sensitive content that some readers may find distressing. A couple from the UK has signed up to be the first to die in a double suicide pod, invented by an Australian doctor, after 46 years of marriage. Peter and Christine Scott, from Suffolk in England’s east, have shared their plans to travel to Switzerland to die together after Ms Scott, a former nurse, was diagnosed with early-stage vascular dementia. After meeting at a jazz club, the pair married 46 years ago, and shared that they have opted out of potentially years of hospital treatment and the crippling costs of care which could eat into their life savings. “We have had long, happy, healthy, fulfilled lives but here we are in old age and it does not do nice things to you,” Mr Scott, 86, told<a title="www.dailymail.co.uk" href="https://www.dailymail.co.uk/news/article-13825105/Former-RAF-engineer-nurse-wife-sign-British-couple-use-double-suicide-pod-Switzerland-dementia.html"> The Daily Mail</a>. “The idea of watching the slow degradation of Chris’s mental abilities in parallel to my own physical decline is horrific to me,” the former Royal Air Force pilot added. “Obviously I would care for her to the point I could not, but she has nursed enough people with dementia during her career to be adamant she wants to remain in control of herself and her life”. “I would not want to go on living without her,” he said of his 80-year-old wife. “I don’t want to go into care, to be lying in bed dribbling and incontinent – I don’t call that a life”. As English law does not allow for euthanasia, the couple have planned their trip to Switzerland for the procedure, where Ms Scott has planned out her final days with her husband. “I’d like to go walking with Peter in the Swiss Alps, by a river. I’d have a beautiful plate of fish for my last supper, and enjoy a great bottle of Merlot,” she said. “I’d make a playlist including Wild Cat Blues and The Young Ones by Cliff Richard and I’ve found a poem called Miss Me But Let Me Go, which sums up exactly how I feel”. The suicide pod, known as Sarco, can be turned on with a simple flick of a switch from inside the futuristic capsule that resembles a modern car. The machine was invented by Australian Dr Philip Nitschke, who has long been behind a number of initiatives to allow legal euthanasia in Australia. The 3D printed Sarco capsule ends the lives of those inside by pumping the pod with nitrogen which replaces the oxygen in the pod, which renders the occupants unconscious within about a minute without, its claimed, any panic or distress. With falling oxygen, the person eventually suffocates. Dr Nitschke said the machine is activated by a button from inside the pod. “The capsule for two people works exactly the same as the single Sarco but there is only one button so they will decide between them who will push it,” he told <a title="www.dailymail.co.uk" href="https://www.dailymail.co.uk/news/article-13825105/Former-RAF-engineer-nurse-wife-sign-British-couple-use-double-suicide-pod-Switzerland-dementia.html">The Daily Mail</a>. “Then they’ll be able to hold each other”. Image credits: Courtesy of Exit International

Legal

Aussie airline's shock collapse

Australia's third largest airline Regional Express, better known as Rex, has entered voluntary administration. The airline will ground all its Boeing 737 jets and cease flying immediately between Australia’s major cities, as Rex struggled to compete with Qantas and Jetstar for customers. In response to the cancellation, Virgin has said it will allow Rex customers with tickets on 737 flights to transfer them to its services. Rex began connecting major cities during the pandemic, but was unable to keep up with other airlines who were more known for servicing Aussie capital cities. While flights to major cities with Rex will cease, the airline confirmed that its flights to and from regional cities, which use smaller Saab 340 turboprops, will continue as normal. The airline currently serves 56 destinations around Australia, many of them remote. In response to the cancelled flights, Qantas and Virgin Australia shared a statement saying they were “sad” for the “difficult” day. “This is a challenging day for our industry and we are sad to see Rex enter voluntary administration with the immediate suspension of its Boeing 737 operations,” a spokesperson for Qantas said. “We know this will be a difficult period for many Rex customers and employees and we stand ready to assist.” The spokesperson said Rex customers impacted by cancelled flights due to the grounding of their domestic jet services can contact Qantas and Jetstar to be reaccommodated on the same route as their original booking at no charge, where seats available. In a statement on the Rex <a href="https://www.rex.com.au/AboutRex/OurCompany/DomesticFlightUpdates.aspx" target="_blank" rel="noopener">website</a>, the stricken airline said it was working with Virgin Australia to assist impacted passengers. “An agreement has been reached with Virgin Australia to honour all prepaid tickets for the Rex Group’ direct services between domestic capital cities, at no additional cost to passengers. “If you hold a prepaid ticket for future travel on any of these routes, you can transfer your Rex booking to a similar Virgin Australia flight.” Customers must re-book their flight by Wednesday August 14th or they will lose their money. “Regional flights are unaffected by the administration and will continue to operate as normal,” it stated. Image credits: Shutterstock

Travel Trouble

What happens if you want access to voluntary assisted dying but your nursing home won’t let you?

<div class="theconversation-article-body"> <a href="https://theconversation.com/profiles/neera-bhatia-15189">Neera Bhatia</a>, <a href="https://theconversation.com/institutions/deakin-university-757">Deakin University</a> and <a href="https://theconversation.com/profiles/charles-corke-167297">Charles Corke</a>, <a href="https://theconversation.com/institutions/deakin-university-757">Deakin University</a> Voluntary assisted dying is now lawful in <a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-all-states-heres-whats-just-happened-in-nsw-and-what-it-means-for-you-183355">all Australian states</a>. There is also <a href="https://nationalseniors.com.au/uploads/VAD-Report-correct-month-12.8.21.pdf">widespread community support</a> for it. Yet some residential institutions, such as hospices and aged-care facilities, are obstructing access despite the law not specifying whether they have the legal right to do so. As voluntary assisted dying is implemented across the country, institutions blocking access to it will likely become more of an issue. So addressing this will help everyone – institutions, staff, families and, most importantly, people dying in institutions who wish to have control of their end. <h2>The many ways to block access</h2> While voluntary assisted dying legislation recognises the right of doctors to <a href="https://theconversation.com/was-take-on-assisted-dying-has-many-similarities-with-the-victorian-law-and-some-important-differences-121554">conscientiously object</a> to it, the law is generally silent on the rights of institutions to do so. While the institution where someone lives has no legislated role in voluntary assisted dying, it can refuse access in various ways, including: <ul> <li> restricting staff responding to a discussion a resident initiates about voluntary assisted dying </li> <li> refusing access to health professionals to facilitate it, and </li> <li> requiring people who wish to pursue the option to leave the facility. </li> </ul> <h2>Here’s what happened to ‘Mary’</h2> Here is a hypothetical example based on cases one of us (Charles Corke) has learned of via his role at Victoria’s <a href="https://www.safercare.vic.gov.au/about/vadrb">Voluntary Assisted Dying Review Board</a>. We have chosen to combine several different cases into one, to respect the confidentiality of the individuals and organisations involved. “Mary” was a 72-year-old widow who moved into a private aged-care facility when she could no longer manage independently in her own home due to advanced lung disease. While her intellect remained intact, she accepted she had reached a stage at which she needed significant assistance. She appreciated the help she received. She liked the staff and they liked her. After a year in the facility, during which time her lung disease got much worse, Mary decided she wanted access to voluntary assisted dying. Her children were supportive, particularly as this desire was consistent with Mary’s longstanding views. Mary was open about her wish with the nursing home staff she felt were her friends. The executive management of the nursing home heard of her intentions. This resulted in a visit at which Mary was told, in no uncertain terms, her wish to access voluntary assisted dying would not be allowed. She would be required to move out, unless she agreed to change her mind. Mary was upset. Her family was furious. She really didn’t want to move, but really wanted to continue with voluntary assisted dying “in her current home” (as she saw it). Mary decided to continue with her wish. Her family took her to see two doctors registered to provide assessments for voluntary assisted dying, who didn’t work at the facility. Mary was deemed eligible and the permit was granted. Two pharmacists visited Mary at the nursing home, gave her the medication and instructed her how to mix it and take it. These actions required no active participation from the nursing home or its staff. Family and friends arranged to visit at the time Mary indicated she planned to take the medication. She died peacefully, on her own terms, as she wished. The family informed the nursing home staff their mother had died. Neither family nor staff mentioned voluntary assisted dying. <h2>Staff are in a difficult position too</h2> There is widespread community support for voluntary assisted dying. In a 2021 survey by National Seniors Australia, <a href="https://nationalseniors.com.au/uploads/VAD-Report-correct-month-12.8.21.pdf">more than 85%</a> of seniors agreed it should be available. So it’s likely there will be staff who are supportive in most institutions. For instance, in a survey of attitudes to voluntary assisted dying in a large public tertiary hospital, <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/imj.15285">88% of staff</a> supported it becoming lawful. So a blanket policy to refuse dying patients access to voluntary assisted dying is likely to place staff in a difficult position. An institution risks creating a toxic workplace culture, in which clandestine communication and fear become entrenched. <h2>What could we do better?</h2> 1. Institutions need to be up-front about their policies Institutions need to be completely open about their policies on voluntary assisted dying and whether they would obstruct any such request in the future. This is so patients and families can factor this into deciding on an institution in the first place. 2. Institutions need to consult their stakeholders Institutions should consult their stakeholders about their policy with a view to creating a “<a href="https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-021-00891-3">safe</a>” environment for residents and staff – for those who want access to voluntary assisted dying or who wish to support it, and for those who don’t want it and find it confronting. 3. Laws need to change Future legislation should define the extent of an institution’s right to obstruct a resident’s right to access voluntary assisted dying. There should be safeguards in all states (as is already legislated <a href="https://documents.parliament.qld.gov.au/tp/2021/5721T707.pdf">in Queensland</a>), including the ability for individuals to be referred in sufficient time to another institution, should they wish to access voluntary assisted dying. Other states should consider whether it is reasonable to permit a resident, who does not wish to move, to be able to stay and proceed with their wish, without direct involvement of the institution. <hr /> The opinions expressed in this article are those of the authors and do not necessarily reflect the views of Victoria’s Voluntary Assisted Dying Review Board.<img style="border: none !important; box-shadow: none !important; margin: 0 !important; max-height: 1px !important; max-width: 1px !important; min-height: 1px !important; min-width: 1px !important; opacity: 0 !important; outline: none !important; padding: 0 !important;" src="https://counter.theconversation.com/content/183364/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /> <a href="https://theconversation.com/profiles/neera-bhatia-15189">Neera Bhatia</a>, Associate Professor in Law, <a href="https://theconversation.com/institutions/deakin-university-757">Deakin University</a> and <a href="https://theconversation.com/profiles/charles-corke-167297">Charles Corke</a>, Associate Professor of Medicine, <a href="https://theconversation.com/institutions/deakin-university-757">Deakin University</a> Image credits: Shutterstock This article is republished from <a href="https://theconversation.com">The Conversation</a> under a Creative Commons license. Read the <a href="https://theconversation.com/what-happens-if-you-want-access-to-voluntary-assisted-dying-but-your-nursing-home-wont-let-you-183364">original article</a>. </div>

Caring

People with dementia aren’t currently eligible for voluntary assisted dying. Should they be?

<div class="theconversation-article-body"><a href="https://theconversation.com/profiles/ben-white-15387">Ben White</a>, <a href="https://theconversation.com/institutions/queensland-university-of-technology-847">Queensland University of Technology</a>; <a href="https://theconversation.com/profiles/casey-haining-1486290">Casey Haining</a>, <a href="https://theconversation.com/institutions/queensland-university-of-technology-847">Queensland University of Technology</a>; <a href="https://theconversation.com/profiles/lindy-willmott-15386">Lindy Willmott</a>, <a href="https://theconversation.com/institutions/queensland-university-of-technology-847">Queensland University of Technology</a>, and <a href="https://theconversation.com/profiles/rachel-feeney-140352">Rachel Feeney</a>, <a href="https://theconversation.com/institutions/queensland-university-of-technology-847">Queensland University of Technology</a> Dementia is the <a href="https://www.dementia.org.au/about-dementia">second leading cause of death</a> for Australians aged over 65. More than 421,000 Australians <a href="https://www.dementia.org.au/about-dementia">currently live with dementia</a> and this figure is expected to almost double in the next 30 years. There is ongoing public <a href="https://www.mja.com.au/journal/2024/220/9/should-voluntary-assisted-dying-victoria-be-extended-encompass-people-dementia">discussion</a> about whether dementia should be a qualifying illness under Australian voluntary assisted dying laws. Voluntary assisted dying is <a href="https://www.unswlawjournal.unsw.edu.au/wp-content/uploads/2023/12/Issue-464-10-Waller-et-al.pdf">now lawful in all six states</a>, but is not available for a person living with dementia. The Australian Capital Territory has <a href="https://www.canberratimes.com.au/story/8631104/marisa-paterson-to-consult-on-voluntary-assisted-dying-amendments/?cs=14329">begun debating</a> its voluntary assisted dying bill in parliament but the government has <a href="https://www.legislation.act.gov.au/DownloadFile/es/db_68610/current/PDF/db_68610.PDF">ruled out</a> access for dementia. Its view is that a person should retain decision-making capacity throughout the process. But the bill includes a requirement to <a href="https://www.legislation.act.gov.au/b/db_68609/">revisit the issue</a> in three years. The Northern Territory is also considering reform and <a href="https://www.theaustralian.com.au/subscribe/news/1/?sourceCode=TAWEB_WRE170_a_GGL&dest=https%3A%2F%2Fwww.theaustralian.com.au%2Fnation%2Fpolitics%2Fconcerning-territory-nt-surveys-public-support-on-euthanasia-for-mentally-ill%2Fnews-story%2F4e45111bb293af4cf32ac3c6df058869&memtype=anonymous&mode=premium&v21=GROUPA-Segment-2-NOSCORE&V21spcbehaviour=append">has invited views</a> on access to voluntary assisted dying for dementia. Several public figures have also entered the debate. Most recently, former Australian Chief Scientist, Ian Chubb, <a href="https://www.abc.net.au/listen/programs/melbourne-drive/voluntary-assisted-dying-dementia-victoria/103467864">called for the law to be widened</a> to allow access. Others <a href="https://www.smh.com.au/national/voluntary-assisted-dying-should-not-be-available-to-dementia-patients-20230607-p5deqo.html">argue</a> permitting voluntary assisted dying for dementia would present unacceptable risks to this vulnerable group. <h2>Australian laws exclude access for dementia</h2> Current Australian voluntary assisted dying laws <a href="https://www.unswlawjournal.unsw.edu.au/wp-content/uploads/2023/12/Issue-464-10-Waller-et-al.pdf">exclude access</a> for people who seek to qualify because they have dementia. In New South Wales, the <a href="https://legislation.nsw.gov.au/view/html/inforce/current/act-2022-017">law specifically states</a> this. In the other states, this occurs through a <a href="https://www.unswlawjournal.unsw.edu.au/wp-content/uploads/2022/04/Issue-451-White-et-al.pdf">combination of the eligibility criteria</a>: a person whose dementia is so advanced that they are likely to die within the 12 month timeframe would be highly unlikely to retain the necessary decision-making capacity to request voluntary assisted dying. This does not mean people who have dementia cannot access voluntary assisted dying if they also have a terminal illness. For example, a person who retains decision-making capacity in the early stages of Alzheimer’s disease with terminal cancer may access voluntary assisted dying. <h2>What happens internationally?</h2> Voluntary assisted dying laws in some other countries allow access for people living with dementia. One mechanism, used in the Netherlands, is through <a href="https://agsjournals.onlinelibrary.wiley.com/doi/full/10.1111/jgs.16692">advance directives or advance requests</a>. This means a person can specify in advance the conditions under which they would want to have voluntary assisted dying when they no longer have decision-making capacity. This approach depends on the person’s family identifying when those conditions have been satisfied, generally in consultation with the person’s doctor. Another approach to accessing voluntary assisted dying is to allow a person with dementia to choose to access it while they still have capacity. This involves regularly assessing capacity so that just before the person is predicted to lose the ability to make a decision about voluntary assisted dying, they can seek assistance to die. In Canada, this has been referred to as the “<a href="https://www.unswlawjournal.unsw.edu.au/wp-content/uploads/2022/04/Issue-451-White-et-al.pdf">ten minutes to midnight</a>” approach. <h2>But these approaches have challenges</h2> International experience reveals these approaches have limitations. For advance directives, it can be difficult to specify the conditions for activating the advance directive accurately. It also requires a family member to initiate this with the doctor. Evidence also shows doctors are <a href="https://link.springer.com/article/10.1186/1472-6939-16-7">reluctant</a> to act on advance directives. Particularly challenging are <a href="https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0401-y">scenarios</a> where a person with dementia who requested voluntary assisted dying in an advance directive later appears happy and content, or no longer expresses a desire to access voluntary assisted dying. Allowing access for people with dementia who retain decision-making capacity also has practical problems. Despite regular assessments, a person may lose capacity in between them, meaning they miss the window before midnight to choose voluntary assisted dying. These capacity assessments can also be very complex. Also, under this approach, a person is required to make such a decision at an early stage in their illness and may lose years of otherwise enjoyable life. Some also argue that regardless of the approach taken, allowing access to voluntary assisted dying would involve unacceptable risks to a vulnerable group. <h2>More thought is needed before changing our laws</h2> There is <a href="https://www.parliament.qld.gov.au/Documents/TableOffice/TabledPapers/2020/5620T490.pdf">public demand</a> to allow access to voluntary assisted dying for dementia in Australia. The mandatory reviews of voluntary assisted dying legislation <a href="https://www.publish.csiro.au/ah/pdf/AH23005">present an opportunity</a> to consider such reform. These reviews generally happen after three to five years, and in some states they will occur regularly. The scope of these reviews can vary and sometimes governments may not wish to consider changes to the legislation. But the Queensland review “<a href="https://www.legislation.qld.gov.au/view/pdf/asmade/act-2021-017">must include a review of the eligibility criteria</a>”. And the ACT bill requires the review to <a href="https://www.legislation.act.gov.au/b/db_68609/">consider</a> “advanced care planning”. Both reviews would require consideration of who is able to access voluntary assisted dying, which opens the door for people living with dementia. This is particularly so for the ACT review, as advance care planning means allowing people to request voluntary assisted dying in the future when they have lost capacity. This is a complex issue, and more thinking is needed about whether this public desire for voluntary assisted dying for dementia should be implemented. And, if so, how the practice could occur safely, and in a way that is acceptable to the health professionals who will be asked to provide it. This will require a careful review of existing international models and their practical implementation as well as what would be feasible and appropriate in Australia. Any future law reform should be <a href="https://www.publish.csiro.au/AH/AH19201">evidence-based</a> and draw on the views of people living with dementia, their family caregivers, and the health professionals who would be relied on to support these decisions.<img style="border: none !important; box-shadow: none !important; margin: 0 !important; max-height: 1px !important; max-width: 1px !important; min-height: 1px !important; min-width: 1px !important; opacity: 0 !important; outline: none !important; padding: 0 !important;" src="https://counter.theconversation.com/content/224075/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /> <a href="https://theconversation.com/profiles/ben-white-15387">Ben White</a>, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, <a href="https://theconversation.com/institutions/queensland-university-of-technology-847">Queensland University of Technology</a>; <a href="https://theconversation.com/profiles/casey-haining-1486290">Casey Haining</a>, Research Fellow, Australian Centre for Health Law Research, <a href="https://theconversation.com/institutions/queensland-university-of-technology-847">Queensland University of Technology</a>; <a href="https://theconversation.com/profiles/lindy-willmott-15386">Lindy Willmott</a>, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, <a href="https://theconversation.com/institutions/queensland-university-of-technology-847">Queensland University of Technology</a>, and <a href="https://theconversation.com/profiles/rachel-feeney-140352">Rachel Feeney</a>, Postdoctoral research fellow, <a href="https://theconversation.com/institutions/queensland-university-of-technology-847">Queensland University of Technology</a> Image credits: Getty Images This article is republished from <a href="https://theconversation.com">The Conversation</a> under a Creative Commons license. Read the <a href="https://theconversation.com/people-with-dementia-arent-currently-eligible-for-voluntary-assisted-dying-should-they-be-224075">original article</a>. </div>

Caring

23-year-old bravely dies on her own terms

A terminally ill young woman from Adelaide has ended her life under the state’s voluntary assisted dying laws. In a funeral notice published in the Adelaide Advertiser, the family of Lily Thai said she died at the Flinders Medical Centre on June 21. “Much loved daughter of Kate and Le. Beloved granddaughter, niece and cousin. Treasured friend to many,” the family wrote. The family have shared that her funeral will be held at Centennial Park Cemetery on June 29. She made the <a href="https://www.oversixty.com.au/health/caring/23-year-old-reveals-why-she-s-chosen-to-end-her-life" target="_blank" rel="noopener">heartbreaking decision</a> to take her own life after countless surgeries failed to improve her illness. Thai suffered from Ehlers Danlos Syndrome (EDS) – a genetic condition that left her completely bedridden and in constant pain. Her powerful story touched thousands nationwide before she passed away. Thai had long wished to take her own life with dignity after a battle with such a debilitating condition. “I decided that pain was so severe it wasn’t worth it, and I just wanted to take it into my own hands,” Thai told the Adelaide Advertiser. After her painful health battle, she spent her last days at the Flinders Medical Centre, where she said she mainly slept while in “excruciating pain” Thai had recently signed the paperwork to use South Australia’s voluntary assisted dying laws, which came into effect in January 2023, to end her life after being administered an IV medication. Image credit: The Advertiser / TikTok

Caring

23-year-old reveals why she's chosen to end her life

23-year-old Lily Thai has made the crippling decision to end her life. The Adelaide native, who suffers from Ehlers Danlos Syndrome (EDS), will use recently passed voluntary assisted dying laws after signing the final paperwork a week prior. In January 2023, South Australia legalised assisted dying with the government funnelling in $18 million over the next five years to support safe access to the service. “I realised that I can’t have any more anaesthesia, so I (couldn’t) have any more feeding tube changes (or) surgeries,” Thai told The Advertiser. EDS is a debilitating genetic condition which has left the 23-year-old completely bedridden and in constant pain. It affects her joints, skin and walls of the blood vessels so severely she is reliant on her father as a caregiver to do everything for her, “even the most intimate things”. Doctors will administer an IV medication that will terminate the young woman’s life within 10 seconds. “I’ll no longer have any pain, I will no longer suffer with any of these issues, and I’ll finally be free of all the suffering that I have endured for so many years.” Thai had initially thought her health deterioration was caused by a spinal fluid leak, but after undergoing treatment to fix it, her condition did not improve and doctors couldn’t give her a definitive diagnosis. As a desperate last measure, she travelled to Sydney to meet a surgeon who “specialised in spinal issues (for) patients with EDS” when she was 21. She was then confined to a halo brace and required a nasal feeding tube as she "couldn’t keep anything down,” and weighed just 40kg. In May 2021, Thai had spinal fusion surgery and just a week later was fitted with a gastro Jejenul feeding tube to vent out stomach acid and secretion. Through her rehab period, hospitals were under strict Covid-19 protocols, so Thai suffered alone without any visitors. “I couldn’t stand not seeing my dad, so I got discharged early,” she said. She was later diagnosed with auto-immune autonomic ganglionopathy — a rare condition where the body’s immune system attacks the nervous system. “The neurologist said that I was in multi-organ failure, but it wasn’t until I had a severe decline after one of my surgeries, (and) when I saw my rehab doctor they found a large lesion of the left side of my brain,” she said. “He suspected I had a type of motor neurone disease.” Thai has spent the past two years at Flinders Medical Centre’s Laurel Hospice, where she shared that most of her days are filled with sleep to avoid being in “excruciating pain”. Healthcare staff there granted one of her final wishes, which was to visit a beach, and so they took Thai in the back of an ambulance to the coastline. An image (at top) shows Lily resting on a bed, enjoying her Maccas fries and looking out at the golden sand and blue water in front of her. While at the hospice, Thai also formed a strong bond with another young woman, Annaliese Holland, who was also suffering a terminal illness at the hospice. The pair say young people with a terminal illness often mourn the “life (they) never got to have.” “For elderly or older people, (they) have memories to look back on to laugh about and cry about,” Holland said. “But for a young person in palliative hospice, you haven’t formed many of them.” “You never do the normal things like going to your high school graduation,” Thai said. “What makes me sad is that … you just want to push on, but at the same time it’s really hard because you know you won’t have babies or any of that,” Holland said. Holland has vowed to do everything in her power to make Thai’s last days in hospice more bearable. “All I can do is brush her (Lily’s) hair or moisturise her legs. I just want her to know that I’m there and people care,” a tearful Holland said. Thai has been able to plan parts of her own funeral and has been busy saying goodbye to family and friends. As part of her legacy, she’s inviting donations for palliative research to The Hospital Research Foundation on her memorial card to be given to funeral attendees. Image credit: Facebook

Caring

People thinking of voluntary assisted dying may be able to donate their organs. We need to start talking about this

<a href="https://theconversation.com/profiles/robert-ray-1441988">Robert Ray</a>, <a href="https://theconversation.com/institutions/deakin-university-757">Deakin University</a> The number of people needing an organ transplant vastly outweighs the number of organs available. <a href="https://www.donatelife.gov.au/sites/default/files/2023-02/OTA%202022%20Donation%20and%20Transplantation%20Activity%20Report.pdf">In 2022</a> there were about 1,800 Australians waiting for an organ but only about 1,200 people received an organ transplant. But in <a href="https://onlinelibrary.wiley.com/doi/10.1111/imj.16085">a recent paper</a>, I outline one unexplored option for increasing the number of potential organ donors in Australia – transplanting organs from people undergoing voluntary assisted dying. This would involve transplanting organs only after someone had died. It’s estimated <a href="https://jamanetwork.com/journals/jama/article-abstract/2616383">about 10%</a> of people eligible for voluntary assisted dying are likely to be medically suitable to donate their organs. Based on <a href="https://www.safercare.vic.gov.au/sites/default/files/2022-09/Voluntary%20Assisted%20Dying%20Review%20Board%20Report%20of%20Operations%20July%202021-June%2022_FINAL.pdf">Victorian figures</a> alone, this could lead to about an extra 40 potential organ donors each year. This type of organ donation has taken place <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9297969/">for more than 20 years</a> in Europe, and more recently in Canada. Organs transplanted from donors undergoing voluntary assisted dying <a href="https://jamanetwork.com/journals/jamasurgery/article-abstract/2769118">have</a> <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.16267">similar</a> <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.16971">success rates</a> to more traditional donations. Yet, this is a discussion we’ve yet to have in Australia. Here are some of the ethical and practical issues we need to start talking about. <h2>Is this ethical? It’s tricky</h2> The main ethical challenge is ensuring a person isn’t motivated to end their life prematurely so they can donate their organs. <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">Internationally</a>, <a href="https://jme.bmj.com/content/42/8/486.short">this challenge</a> is mainly addressed by having <a href="https://www.sciencedirect.com/science/article/pii/S1600613523000291">independent assessments</a> by multiple doctors. This is to ensure the motivation is genuine and honest, much like assessing someone before voluntary assisted dying. Similarly, it is important the doctor of someone undergoing voluntary assisted dying isn’t persuading them to donate an organ. This means any doctor overseeing voluntary assisted dying may be limited in how much they can discuss organ donation with their patient. Again, this <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">has been managed internationally</a> by having separate, independent doctors overseeing organ donation and voluntary assisted dying, <a href="https://www.cmaj.ca/content/190/44/E1305.short">without one influencing</a> the other. <figure class="align-center zoomable"><a href="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img src="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px" srcset="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=437&fit=crop&dpr=1 600w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=437&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=437&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=549&fit=crop&dpr=1 754w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=549&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=549&fit=crop&dpr=3 2262w" alt="Elderly woman in bed hand on covers" /></a><figcaption>Is this what people really want, with so little time left? <a class="source" href="https://www.shutterstock.com/image-photo/senior-woman-laying-on-bed-hospital-1054837748">Shutterstock</a></figcaption></figure> Organ donation may also affect the way voluntary assisted dying is conducted, which <a href="https://www.sciencedirect.com/science/article/pii/S1600613523000291">may impact</a> participants’ very limited quality of life. That’s because determining if someone is eligible to donate an organ involves a number of <a href="https://jme.bmj.com/content/43/9/601.short">investigations</a>. These may include blood tests, radiology (imaging) and numerous clinical encounters to exclude diseases such as cancer, which would prevent someone donating their organs. These investigations may be exhausting but necessary. This burden must be weighed against the participant’s wishes and motivation to donate their organs. So people must also be informed of the impact organ donation will have on their limited life left. The choices of people considering this option must be respected and they must be given multiple opportunities to review their decision, without undue influence or bias. <h2>Practical issues: coordination, location, regulation</h2> Practically, combining organ donation and voluntary assisted dying is <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">challenging</a>. This includes the difficulty organising and coordinating specialists in organ donation, voluntary assisted dying and transplantation. This is why, internationally, organ donation of this nature mostly occurs in large hospitals, where it’s easier to coordinate. So if people want to donate an organ this way, they may spend their last moments in an unfamiliar environment. <figure class="align-center zoomable"><a href="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img src="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px" srcset="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" alt="Patient being wheeled on stretcher through hospital corridors" /></a><figcaption>People may have to be moved to a large hospital with the facilities and staff on hand. <a class="source" href="https://www.shutterstock.com/image-photo/surgeon-assistant-team-transport-move-stretcher-2062330820">Shutterstock</a></figcaption></figure> Efforts have been made <a href="https://jamanetwork.com/journals/jamasurgery/article-abstract/2776765">internationally</a> to prioritise these valuable last moments by giving people the choice of where voluntary assisted dying occurs (<a href="https://www.cmaj.ca/content/190/44/E1305.short">such as their home</a>). But this currently only occurs in a minority of cases and increases the complexity of organ donation. Regulating the process is also essential to developing a safe, trustworthy and effective program. Ideally a centralised organisation such as Australia’s national <a href="https://www.donatelife.gov.au">Organ and Tissue Authority</a> would organise, undertake and regulate this. However, this may be challenging given voluntary assisted dying practices are specific to each state. <h2>The challenges ahead</h2> If someone considering voluntary assisted dying wants to donate their organs and is deemed eligible, there is currently <a href="https://onlinelibrary.wiley.com/doi/10.1111/imj.16085">no legal barrier in Australia</a> to stop them. What might prevent them is how their doctor responds, and whether there are the services and organisations willing to fulfil this request ethically and practically. The next step in considering this form of organ donation is to discuss the prospect publicly. Every extra donated organ is potentially lifesaving. So we should make every effort to consider potential safe and ethical ways to increase donation and transplantation rates.<img style="border: none !important; box-shadow: none !important; margin: 0 !important; max-height: 1px !important; max-width: 1px !important; min-height: 1px !important; min-width: 1px !important; opacity: 0 !important; outline: none !important; padding: 0 !important;" src="https://counter.theconversation.com/content/206298/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /> <a href="https://theconversation.com/profiles/robert-ray-1441988">Robert Ray</a>, Affiliate Associate Lecturer, School of Medicine, <a href="https://theconversation.com/institutions/deakin-university-757">Deakin University</a> Image credit: Shutterstock This article is republished from <a href="https://theconversation.com">The Conversation</a> under a Creative Commons license. Read the <a href="https://theconversation.com/people-thinking-of-voluntary-assisted-dying-may-be-able-to-donate-their-organs-we-need-to-start-talking-about-this-206298">original article</a>.

Body

Long Covid sufferer applies for voluntary euthanasia

After suffering with long Covid for over two years, a Canadian woman believes she has been left with no choice but to apply for voluntary euthanasia. Tracey Thompson, a Toronto resident in her 50s, told <a href="https://toronto.ctvnews.ca/ontario-woman-enduring-effects-of-long-covid-begins-process-for-medically-assisted-death-1.5976944" target="_blank" rel="noopener" data-link-type="article-inline">CTV News</a> she had begun the process of applying for Medical Assistance in Dying (MAiD), due to extreme fatigue and a lack of financial support. Tracey used to work long hours as a chef, but has been unable to work for the last 26 months, with no foreseeable end to her forced unemployment. “(MAiD) is exclusively a financial consideration,” she said. “My choices are basically to die slowly and painfully, or quickly. Those are the options that are left.” As well as a lack of financial support, Tracey has experienced long Covid symptoms such as severe fatigue, blurred vision, difficulty digesting food, difficulty breathing, an altered sense of taste and smell, and scars on her heart from swelling due to myocarditis. While health experts say long Covid is difficult to diagnosis, it is estimated that five percent of those who contract the virus will go on to have long term symptoms. Tracey also told CTV that she now struggles to get up and look after herself, which is very different to her previous fast paced life in a physically demanding job. “From being able-bodied and employed to basically bed-bound,” she said. “I can’t get up on average for 20-plus hours. I have very little capacity to expend the energy physically, mentally and emotionally, so I try to stay home all the time.” But Thompson stressed she still enjoys life and doesn’t want to die, but doesn’t think she could survive without an income. “I still enjoy life. Birds chirping, small things that make up a day are still pleasant to me, they’re still enjoyable. I still enjoy my friends. There’s a lot to enjoy in life, even if it’s small,” she said. “But I don’t relish the idea of suffering for months to come to the same conclusion." “When support is not coming, things aren’t going to change. It seems irrational to put myself through that just to die in the end.” While Tracey is unsure if she would be eligible for the Ontario Disability Support Program, she believes the maximum monthly payment would only just cover her rent, leading her to apply for the drastic action of voluntary euthanasia. In Canada, you do not need to have a terminal illness to be eligible for MAiD, but rather have an illness that “cannot be relieved under conditions that you consider acceptable”. Thompson said she was confident she would get approval. “As best I know, I would meet the criteria,” she said. "I'm very ill. There is no treatment. There is no cure." Image credits: CTV

Caring

Aussie with terminal cancer uses time left to make her mark

An Australian researcher who has been diagnosed with terminal ovarian cancer is busy making plans for when she’s gone - including a contribution she hopes will help advance research in animal studies. Siobhan O’Sullivan was diagnosed with stage 3 ovarian cancer in July 2020, finding out within a year that the cancer had spread and that her illness was terminal. “In the week prior to my diagnosis, I was starting to say to people, ‘I’m not feeling right - I think it’s stress because Dad’s going to die soon’,” she told <a href="https://7news.com.au/lifestyle/health-wellbeing/a-silent-killer-has-left-her-terminally-ill-now-this-aussie-woman-has-a-simple-message-c-6854866" target="_blank" rel="noopener">7News</a>. “The week before dad died, I went to the doctor and said, ‘Something’s not right’.” During her treatments Siobhan suffered multiple strokes - an unexpected side effect - but even extensive treatment couldn’t stop the cancer from spreading. “That was a huge blow for me because a lot of women at that point do get some remission time,” she said. “I’m now at 19 months, which means I’m on borrowed time.” Though she’s living with death, Siobhan has maintained her humour and optimism, as well as her advocacy for ovarian cancer and the legalisation of voluntary assisted dying. She also began making plans, divesting her property and funds to her niece, nephew, godson and his sister, and ensuring her podcast is in good hands once she’s gone. Siobhan has also bequeathed $50,000 to the Australisian Animal Studies Association (AASA), which she is a founder of, and is helpling to establish two awards for future researchers. She is an associate professor of politics at Sydney’s University of New South Wales and was extremely involved in research around animal studies and her other passion, the alleviation of social issues related to poverty. Thanks to her donation, the AASA is offering two new prizes: one for early-career researchers, and the other for animal studies scholars, artists or advocates who have worked to promote their insights and findings with their peers and the public. “This is an exciting way to help the field of animal studies,” she said in a <a href="https://www.inside.unsw.edu.au/awards/new-awards-scheme-advances-the-emerging-sub-discipline-animal-studies#:~:text=As%20a%20founder%20of%20the,be%20established%20in%20coming%20years." target="_blank" rel="noopener">statement</a>. “My own research … suggests that many animal studies scholars feel isolated and their research is not acknowledged by their own institutions. “These awards are a way of strengthening the animal studies community and giving scholars a sense of achievement and recognition.” As she nears the end of her life, Siobhan has said she would feel immensely comforted by the thought that she could legally end her life before her cancer brings her even more suffering. <blockquote class="twitter-tweet"> I was so honoured to speak on behalf of people facing horrible deaths in NSW. Today I'll be watching <a href="https://twitter.com/nsw_upperhouse?ref_src=twsrc%5Etfw">@nsw_upperhouse</a> & <a href="https://twitter.com/NSWParlLA?ref_src=twsrc%5Etfw">@NSWParlLA</a> closely. I hope our political leaders use their power to ease the load of the terminally ill & their friends & family. <a href="https://twitter.com/hashtag/AssistedDying?src=hash&ref_src=twsrc%5Etfw">#AssistedDying</a> <a href="https://twitter.com/hashtag/VAD?src=hash&ref_src=twsrc%5Etfw">#VAD</a> <a href="https://twitter.com/hashtag/nswpol?src=hash&ref_src=twsrc%5Etfw">#nswpol</a> <a href="https://t.co/hecIbBdBAl">pic.twitter.com/hecIbBdBAl</a> — Siobhan O'Sullivan 🥦😸♋ (@so_s) <a href="https://twitter.com/so_s/status/1527089433501405184?ref_src=twsrc%5Etfw">May 19, 2022</a></blockquote> “My view is that there is no benefit that’s going to come to me, or my family, or this world, for me to suffer the last couple of weeks of a death by ovarian cancer,” she said. But the very recent <a href="https://www.oversixty.com.au/health/caring/emotional-scenes-as-nsw-passes-law-on-voluntary-assisted-dying" target="_blank" rel="noopener">passing of the Voluntary Assisted Dying Bill</a> in NSW Parliament might still come too late for Siobhan, since it could take up to 18 months for the law to come into effect. Despite it not necessarily being an option she could take up, Siobhan says her advocacy will help others in the future. “This is for the other people, for the next people - the people in one, two, three years time,” she said. Image: Siobhan O’Sullivan (Facebook)

Caring

Emotional scenes as NSW passes law on Voluntary Assisted Dying

The NSW parliament has legalised voluntary assisted dying (VAD), with Thursday's historic vote meaning terminally ill people can now choose the timing of their death. NSW joins the rest of Australia’s states in making VAD legal with a final vote of 23 MPs in favour and 15 opposing. Independent Sydney MP Alex Greenwich, who introduced the bill to parliament late last year, told members that the “entire diversity” of parliament were involved in passing the bill, with 28 co-sponsors from all parties - the highest number in Australian parliamentary history per <a href="https://www.smh.com.au/politics/nsw/voluntary-assisted-dying-legalised-in-nsw-20220519-p5amo0.html" target="_blank" rel="noopener">The Sydney Mkorning Herald</a>. <blockquote class="twitter-tweet"> "We are celebrating this historic day" "Compassion has won" says Independent MP <a href="https://twitter.com/AlexGreenwich?ref_src=twsrc%5Etfw">@AlexGreenwich</a>, flanked by the Voluntary Assisted Dying Bill's co-sponsors and advocates. It's been 20 years since the first attempt to pass a law like this in NSW. <a href="https://twitter.com/hashtag/nswpol?src=hash&ref_src=twsrc%5Etfw">#nswpol</a> <a href="https://t.co/8wNpjSEZP3">pic.twitter.com/8wNpjSEZP3</a> — Sarah Navin (@SarahNavin) <a href="https://twitter.com/SarahNavin/status/1527131431163797505?ref_src=twsrc%5Etfw">May 19, 2022</a></blockquote> “For those wondering what happened with the Voluntary Assisted Dying Bill last night; the bill was debated till midnight and almost all amendments were dealt with,” Mr Greenwich explained on social media at 6am on Thursday morning. “There is one more amendment this morning to vote on and then a final vote in both the Upper and Lower House.” MPs debated nearly 100 amendments on Wednesday, with the sitting ending at midnight. The majority of amendments, including the push to allow aged care and residential homes to block VAD from occurring in their facilities, were voted down during the debate according to the <a href="https://www.abc.net.au/news/2022-05-19/voluntary-assisted-dying-laws-pass/101079940" target="_blank" rel="noopener">ABC</a>. At midday, it was announced that the bill had passed the upper house. The lower house then approved the bill approximately an hour later. <blockquote class="twitter-tweet"> Proud to be sitting in the NSW parliament to watch the Voluntary Assisted Dying Bill finally pass into law. This will make such a difference to the lives of so many, allowing people to choose to live the end of their lives as well as possible and to die with dignity. ✨❤️ — Abigail Boyd (@AbigailBoydMLC) <a href="https://twitter.com/AbigailBoydMLC/status/1527120671498588161?ref_src=twsrc%5Etfw">May 19, 2022</a></blockquote> Finance Minister Damien Tudehope, an opponent of the bill, told the upper house that it was a “dark day” for the state. “It was a sad day because it was an opportunity for NSW to say ‘we can be better than this’,” Mr Tudehope said. He added that it would be judged by history as a “dreadful mistake”. However, advocate groups such as Go Gentle Australia and Dying with Dignity, as well as individual supporters of VAD, have welcomed the decision. <blockquote class="twitter-tweet"> Voluntary assisted dying set to become law in NSW. Congratulations and thank you to all the advocates, especially those who fought for their right to die with dignity, and died waiting and the 28 MPs who co-signed the Bill, tabled by my MP, <a href="https://twitter.com/AlexGreenwich?ref_src=twsrc%5Etfw">@AlexGreenwich</a> <a href="https://twitter.com/hashtag/voluntaryassisteddying?src=hash&ref_src=twsrc%5Etfw">#voluntaryassisteddying</a> — Kimberley Ramplin (@Kimbo_Ramplin) <a href="https://twitter.com/Kimbo_Ramplin/status/1527130066349481985?ref_src=twsrc%5Etfw">May 19, 2022</a></blockquote> “VAD is now legal in NSW, the culmination of 50 years of advocacy. Congratulations to all involved,” Go Gentle Australia tweeted. “Congratulations to everyone involved in this campaign!” Greens Senator Mehreen Faruqi wrote. “I was part of the Working Group on Assisted Dying in NSW Parliament, which introduced the first bill. I’m proud to have played a role so that people can die with dignity.” “Genuinely stoked,” Scott Phillips, the director of City Recital Hall, said. “I have no idea if my old man would have taken the option, in his final days as he battled cancer. “But I am so pleased that the choice will be available to others in NSW as a result of this bill.” <blockquote class="twitter-tweet"> At long last. Choice & dignity for terminally ill patients in NSW. Congrats to all who fought so courageously for this change. Now legalised in every State, the Federal Government need to stop blocking the NT & ACT from debating this reform. <a href="https://twitter.com/hashtag/ausvotes?src=hash&ref_src=twsrc%5Etfw">#ausvotes</a> <a href="https://twitter.com/hashtag/auspol?src=hash&ref_src=twsrc%5Etfw">#auspol</a> <a href="https://twitter.com/hashtag/nswpol?src=hash&ref_src=twsrc%5Etfw">#nswpol</a> <a href="https://twitter.com/hashtag/vad?src=hash&ref_src=twsrc%5Etfw">#vad</a> <a href="https://t.co/UAwfar1O4X">https://t.co/UAwfar1O4X</a> — JillHennessyMP (@JillHennessyMP) <a href="https://twitter.com/JillHennessyMP/status/1527130639816093696?ref_src=twsrc%5Etfw">May 19, 2022</a></blockquote> According to <a href="https://twitter.com/10NewsFirstSyd/status/1527133466181005312" target="_blank" rel="noopener">10 News First Sydney</a>, the bill allows for people to choose to end their life if they have suffering that can’t be relieved and are likely to die of a disease within six months, or within a year in the case of neurodegenerative disease. The news comes just days after Sara Wright, a nurse who has long advocated for VAD to be legalised, <a href="https://www.oversixty.com.au/health/caring/terminally-ill-nurse-caught-in-desperate-waiting-game" target="_blank" rel="noopener">spoke out</a> about waiting for the decision to be made while being “virtually paralysed” as a result of motor neuron disease - estimating she has months left to live. “I don’t think that I will live for more than another six to eight months, as my breathing capacity is reducing very fast and I do not wish to have a tracheostomy (an operation where a breathing hole is cut into the front of the neck and windpipe),” she told 7News. “I know that all my family, my parents, my brothers, my ex-husband are all in support of voluntary assisted dying and helping me relieve my suffering. “But none of us want to break the law or risk anyone being imprisoned if they helped me.” Image: @DWDnsw (Twitter)

Caring

Terminally ill nurse caught in desperate waiting game

A nurse who has months to live as a result of her diagnosis of motor neuron disease (MND) is “virtually paralysed” and waiting for the NSW government to decide how she will die. Sara Wright had been a nurse for 33 years before she was diagnosed with amyotrophic lateral sclerosis (ALS) - a subtype of MND - two years ago, and is now dependent on a carer 24 hours a day. “The disease started as a weakness in my right foot, travelled up my right leg, then my left foot and leg,” the 54-year-old told <a href="https://7news.com.au/news/public-health/virtually-paralysed-nurse-waits-for-nsw-parliament-to-decide-how-she-will-die-c-6699939">7NEWS.com.au</a>. “Then it travelled up my torso affecting my upper body, firstly my abdominal muscles, and now it affects both of my arms and hands, my lungs and my swallowing and speaking muscles.” Ms Wright, who shared her story via dictation since speaking is difficult and painful, is waiting to see whether voluntary assisted dying laws (VAD) will be passed in the NSW Upper House next week. If they don’t pass, she says she will likely “have to deal with suffocating or choking to death”. “It’s a terminal illness and the average life expectancy is three to five years,” she explained. “Given I have already been living with the disease for three years, and the progression has been faster than I ever could have expected, I don’t know how long I will live. “I don’t think that I will live for more than another six to eight months, as my breathing capacity is reducing very fast and I do not wish to have a tracheostomy (an operation where a breathing hole is cut into the front of the neck and windpipe).” ALS/MND is more common among adults aged between 40 and 70 years, with 384 people diagnosed each day according to the <a href="https://www.als-mnd.org/what-is-alsmnd/" target="_blank" rel="noopener">International Alliance of ALS/MND Associations</a>. Ms Wright’s career as a nurse made her all too aware of the “limitations of palliative care in the final stages of terminal illness”, so she initially planned to book into Dignitas, a non-profit organisation in Switzerland that offers a range of end-of-life services. But, the COVID-19 pandemic derailed her plan with the closure of international borders. She then considered moving interstate, where VAD is legal, but she worried about uprooting her 15-year-old daughter, Ester, from her home and friends, especially since most of their family is UK-based. “(Ester) is now 15 and she needs to have her community around her for support when I die,” she said. “Obviously this is an incredibly difficult conversation to have with your own child. “We have not specifically spoken about what could happen to me if the laws aren’t passed … but I have tried to assure her that family in the UK will fly out to be with her as soon as they can if I die unexpectedly.” Ms Wright’s fate is tied to the voluntary assisted dying bill, which passed through the NSW Parliament’s lower house last year and is legal or will soon be legal in <a href="https://end-of-life.qut.edu.au/assisteddying" target="_blank" rel="noopener">every other state</a> except NSW. “I know that all my family, my parents, my brothers, my ex-husband are all in support of voluntary assisted dying and helping me relieve my suffering,” she said. “But none of us want to break the law or risk anyone being imprisoned if they helped me.” Since the bill entered the upper house last March, it has been debated passionately and passed through a second reading stage last week. It has even divided the state’s core leadership, with Premier Dominic Perrottet opposing the bill in favour of improving palliative care and Health Minister Brad Hazzard supporting it - despite opposing euthanisia for 29 years. Ms Wright, a strong supporter of VAD laws, has been brought close to the death of others during her nursing career and said she was “pretty certain” that if members debating the bill had seen people die uncomfortable, drawn-out deaths like she had, they would support the bill. “I have seen far too many people, elderly people, in the middle of the night in a ward without anyone there to hold their hand because nobody knew that was going to be their time to die,” she said. “I think that most people don’t think enough about death because we are all frightened of it. “And this could be the reason that some people are refusing to consider VAD laws, because it’s a topic that is deeply uncomfortable and taboo. “If we as a society were more mindfully aware and thoughtful about death, as it is the only certain outcome of life, then perhaps people would develop more compassion.” Though the laws could still be passed at some point if it fails to pass in next week’s final vote, Ms Wright said it would affect her whole family if it was too late for her to take advantage of it. “This will not only cause suffering to me but also to all of my family,” she said. “I wonder how many people have really stopped to think about what they would like, if they were in a position where they were going to die of (an) unpleasant and drawn-out death.” Image: 7News

Caring

225kg "Hank the Tank" bear ransacks wealthy neighbourhood

Residents of a wealthy California neighbourhood have been terrorised by a 225kg black bear, nicknamed Hank the Tank by authorities. According to the California Department of Fish and Wildlife (CDFW) , the one bear has been linked to "property damage at 38 different properties" in the affluent Tahoe Keys neighbourhood. The trouble-making bear has been the source of more than 150 calls between law enforcement and wildlife personnel in recent months. Peter Tira, a spokesperson for the CDFW said Hank has been spotted more and more as he has developed a taste for pizza, and has yet to be deterred by efforts from local police to scare it off with paintballs and sirens. “It’s easier to find leftover pizza than to go in the forest,” Tira said “This is a bear that has lost all fear of people,” he added. “It’s a potentially dangerous situation.” Due to the heightened number of sightings and complaints about Hank, the CDFW has been setting up traps to catch the beast, but to no avail. “The trapping activity is a measure of last resort to capture and euthanise a specific and what we call a severely habituated or human-food conditioned black bear,” Tira said. Despite the potential danger, the bear hunt has sparked an outcry from local residents, who tried to sabotage them by trying to scare away the bear, playing loud music, and even spray-painting “Bear Killer” on the government’s trap. A bear activist group called the BEAR League has been coordinating with the CDFW for Hank the Tank to be relocated to a wildlife sanctuary instead of euthanised. “The BEAR League reached out to the director of an excellent out-of-state wildlife sanctuary who agreed he has room and would be very willing to give this bear a permanent home,” said executive director Ann Bryant. “We notified [the California Department of Fish and Wildlife] on Tuesday morning asking that this option be seriously considered rather than killing the bear.” While talks to relocate Hank are still ongoing, the CDFW has urged residents to practice preventive measures to keep bears out, such as securing garbage properly and keeping trash out of cars. According to the New York Post, when people relocated to Tahoe Keys to work from home due to the pandemic, these new residents did not adhere to preventive measures, prompting Hank the Tank to come out of the woods and forage for food. Image credits: Facebook - BEAR League

Family & Pets

“Odiously absurd”: Animal shelter euthanises dogs over COVID-19 fears

An animal shelter in north-west New South Wales has come under fire for euthanising several rescue dogs. Authorities at the Bourke Shire Council put down the animals to further enforce COVID-19 travel restrictions in the area . A shelter in Cobar, in there state's central west, was supposed to come and collect the animals, but the Bourke Shire Council didn't want breaching state-wide travel restrictions. Residents in regional New South Wales are currently subject to lockdown measures, containing them to their local government area unless leaving for essential reasons. The town of Cobar has a population of under 4,000 and has remained largely untouched by COVID-19, with fragments detected in wastewater samples but no cases reported. The Office of Local Government has launched an investigation to the killings, after receiving nation-wide backlash. Animal Justice Party MP Emma Hurst said she was told 16 dogs were killed, including a “mother dog and her puppies”. The MP took to Facebook to express her anger and sadness at the cruel act. “While there are reports the dogs were shot, our contacts have told us they were euthanised,” she wrote. “I’m sharing this to make it clear there is NO health order for pounds to kill all the animals - please share this so it doesn’t happen again.” News of the mass-killings have reached an international audience online, with many condemning the barbarity of the council's decision. British comedian and animal right activist Ricky Gervais described the council as “stupid c****” while English football legend Gary Lineker said it was “odiously absurd”. Image credit: FILE PHOTO - Shutterstock

Family & Pets

"Crushed with guilt": Decision to put down "pandemic puppy" causes heated debate

A journalist has sparked debates online over her decision to euthanise her dog she adopted during the COVID-19 pandemic. Madeline Bills published a piece on Slate sharing the story of her adoption of Bennie, “a six-year old beagle whose photo melted my heart”, just before Christmas. “Like many others last year, I was thrilled to adopt a dog,” she wrote. “The so called pandemic puppy boom made for what felt like stiff competition at the time.” But, the journalist said the New Jersey animal shelter she adopted Bonnie from likely failed to inform her of the dog’s history of aggressive behaviour. After six months of behavioural training and “daily dog anxiety meds” seemed to make no difference to Bonnie’s biting, Bilis made the decision to try and rehome the pooch. “But I soon learned the shelter where Bonnie came from wouldn’t help me. A volunteer explained that Bonnie was too dangerous to adopt out again, and their affiliated sanctuaries - including several beagle-specific rescues - declined to take her,” she wrote. “Another dog rescue organisation in New York City told me that her bite history - seven bites at the time, though that number would grow - was too extensive for her to even qualify for a special rehabilitation program.” Bilis said both conversations ended with the same conclusion: “behavioural euthanasia”. “She was adorable - and violent,” Bilis wrote. “I found a resolution many choose but few acknowledge.” <a href="https://twitter.com/madelinebilis/status/1402611855252668417">https://twitter.com/madelinebilis/status/1402611855252668417</a> The article drew praise from some readers for addressing a difficult topic, which described how Bonnie was involved in several biting incidents. “Last Christmas morning, I patted my bed, invitingly my newly adopted beagle, Bonnie, to jump and cuddle,” she began in the piece. “My boyfriend, still under the covers, reached out to pet her soft little head, which was now wedged between us. I turned away to grab my phone, and it happened: a guttural bark, followed by a human scream. I whipped around to see my boyfriend’s hand covered in blood. It was Bonnie’s second bite in the week since I’d adopted her.” Bilis recounted another incident where Bonnie bit a man walking past them on the footpath, though she was surprised “the man brushed off the incident”. As the number of incidents continued to grow, Bilis said her “desire to stop living with a dangerous animal” grew too. “As the weeks went by and no new options appeared, I realised I had a choice: I could send her off with a stranger one day - someone she would certainly injure, and who would perhaps end up euthanising her anyway - or I could allow her to leave this terrifying world peacefully with someone she loves.” She stressed the choice to pursue behavioural euthanasia was “not a decision made out of convenience”. “Crushed with guilt, I wondered if there was more I could have done to help my sweet beagle,” she said. Unsurprisingly, the article drew criticism online, with other owners of adopted dogs claiming the decision was motivated by inconvenience. One user said that in her “30-year-plus career as a veterinarian who works on dogs with anxieties and behavioural issues, I’ve only had to euthanise two dogs for child safety reason.” Many also defended Bilis, agreeing she had no choice in the matter. “A lot of people angry about this article but obviously the correct thing to do with a violent and dangerous domesticated animal is put it down,” wrote Daily Wire host Matt Walsh.

Family & Pets

“He taught me unconditional love”: Terminally ill teen films message before ending his own life

The heartbroken parents of a terminally ill teenager who took his own life in front of them are on a mission to get voluntary euthanasia introduced nationwide after the traumatic experience. Rhys Habermann pleaded for his hardworking parents to be spared the consequences of his decision in a devastating video that was handed over to the police and ABC's 7.30 program. The 19-year-old told the camera he wanted the right to die peacefully. "I believe in my right to die by my own choosing. This is tough for everybody but I refuse to go through palliative care, after experiencing a little bit of it this last week," he said. "It's more painful than I could have ever imagined." His parents, Brett and Liz Habermann, from Wuddina, a small country town in South Australia, struggled with their son's decision for months. 18 months before he passed on January 11. 2017, he was diagnosed with Ewing's sarcoma, a bone cancer that began in his hip but spread to his shoulders, ribs, spine, skull and lungs. "All Rhys wanted to do was continue with his Year 12 studies. The doctor said, 'Forget Year 12 mate, you need to concentrate on just staying alive'," Mr Habermann told the program. "It was terrible, after taking him home from chemo and just listening to him in his room at the flat we were using, just continuously vomiting." When it was revealed that his diagnosis was terminal, Rhys spoke to his parents about ending his own life rather than going through palliative care. He wanted to do it alone in a motel room so as not to potentially incriminate his parents. But they refused to allow it, telling Rhys he needed to be at home. "And he said, 'but you could go to jail' and it's like 'so be it, whatever'. And with that he taught me unconditional love, to be there with him," Ms Habermann said. "Rhys was really worried about what would happen afterwards. That's why he was adamant we shouldn't have been there, but there's no way in hell we weren't going to be there. "He spent the last 18 months of his life finding the best way to die that wasn't going to totally ruin us." In order to protect his family as much as he possibly could, Rhys asked his parents to film him from his bed. Within hours of Rhys' death, police had arrived and declared the home a crime scene. Officers spent 12 hours rummaging through Rhys' room, laptop, phone and personal affects. It took a further 18 months to clear his parents of any wrongdoing. "It could have been so much kinder to all of us. He was dying anyway," Ms Habermann said. "He felt so robbed that he didn't have a choice, that he was dying anyway. That choice was taken from him. We could've just all been in such a good place that we could have spent his final moments not being scared of what's going to happen." The couple are now pleading with Australian state governments to introduce assisted dying laws to allow people with terminal illnesses the option to die on their own terms. The mother-of-five is actively campaigning for sweeping changes to current laws. "It is their choice. It is voluntary. It is peaceful. It is time South Australian politicians (who seem to think they are God) show these people compassion and pass this Bill," she said earlier this month on the matter. "Apparently it needs to be accepted as a part of life that some people will suffer intolerable pain as they are dying and we have no right to 'kill' them off. "The passing of this Bill in SA won't help my son but I’m still doing this for you Rhys - you deserved so much more than the crap hand life threw at you."

News

Facebook blocks terminally ill man from live streaming his death

Facebook said it would block the livestream of a Frenchman suffering from an incurable condition who wanted to broadcast his death on the social media platform. Alain Cocq recently announced that he was refusing all food, drink and medicine after President Emmanuel Macron declined his request for euthanasia. The 57-year-old suffers from a rare medical condition which causes the walls of his arteries to stick together. Cocq believed he had less than a week to live and said he would broadcast his death from Saturday morning. "The road to deliverance begins and believe me, I am happy," he wrote on Facebook shortly after midnight in a post announcing he had "finished his last meal". "I know the days ahead are going to be difficult but I have made my decision and I am calm," he added. Facebook has been heavily criticised over the way it monitors content and said it was against their rules to portray suicide. "Although we respect (Cocq's) decision to want to draw attention to this complex question, following expert advice we have taken measures to prevent the live broadcast on Alain's account," a Facebook spokesman told AFP. "Our rules do not allow us to show suicide attempts." Cocq is trying to gather supporters saying: "Facebook is blocking my video broadcast until September 8." "It is up to you now," he said in a message to supporters before giving out Facebook's French address "so you can let them know what you think about their methods of restricting free speech". "There will be a back-up within 24 hours" to run the video, he added. Cocq had asked Macron for permission after he wanted to die in peace by taking a substance, but the president refused, saying it was not allowed under French law. Cocq has used his plight to draw attention to the situation of terminally ill patients in France who are unable to be allowed to die in line with their wishes. "Because I am not above the law, I am not able to comply with your request," Macron said in a letter to Cocq, which the patient published on his Facebook page. "I cannot ask anyone to go beyond our current legal framework... Your wish is to request active assistance in dying which is not currently permitted in our country."

Legal

Paralympic gold medallist dies by euthanasia at age 40

Paralympian gold medallist Marieke Vervoort has passed away by euthanasia at the age of 40, 11 years after making a promise to herself. The Belgian Paralympian suffered from an incurable degenerative spinal condition which was diagnosed at the age of 21. The diagnosis followed years of pain, and Vervoort continued to suffer after receiving her diagnosis. "I know how I feel now, but I don't know how I'll feel after half an hour," she says. "It can be that I feel very, very bad, I get an epileptic attack, I cry, I scream because of pain. I need a lot of painkillers, valium, morphine,” she told <a rel="noopener" href="https://www.bbc.com/sport/disability-sport/50150513" target="_blank">the BBC.</a> "A lot of people ask me how is it possible that you can have such good results and still be smiling with all the pain and medication that eats your muscles. For me, sports, and racing with a wheelchair - it's a kind of medication." Vervoort was a strong advocate for euthanasia, as she first signed the documents necessary back in 2008, just six years after euthanasia was made legal in Belgium. "I was a very depressed person. I was thinking about how I was going to kill myself,” she said. "All those people who get those papers here in Belgium – they have a good feeling. They don't have to die in pain. "They can choose a moment, and be with the people they want to be with. With euthanasia you're sure that you will have a soft, beautiful death." <blockquote style="background: #FFF; border: 0; border-radius: 3px; box-shadow: 0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width: 540px; min-width: 326px; padding: 0; width: calc(100% - 2px);" class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/B3x0kvcH4ud/?utm_source=ig_embed&utm_campaign=loading" data-instgrm-version="12"> <div style="padding: 16px;"> <div style="display: flex; flex-direction: row; align-items: center;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;"></div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;"></div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;"></div> </div> </div> <div style="padding: 19% 0;"></div> <div style="display: block; height: 50px; margin: 0 auto 12px; width: 50px;"></div> <div style="padding-top: 8px;"> <div style="color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">View this post on Instagram</div> </div> <a style="color: #000; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" rel="noopener" href="https://www.instagram.com/p/B3x0kvcH4ud/?utm_source=ig_embed&utm_campaign=loading" target="_blank">Can’t forget the good memories!</a> <p style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;">A post shared by <a style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" rel="noopener" href="https://www.instagram.com/wielemie.marieke.vervoort/?utm_source=ig_embed&utm_campaign=loading" target="_blank"> Marieke Vervoort</a> (@wielemie.marieke.vervoort) on Oct 18, 2019 at 4:45pm PDT </div> </blockquote> A statement from the Belgian Paralympic Committee and IPC called her a “source of inspiration in our society”. "We will not forget Marieke Vervoort's great sporting achievements, as well as her courage in the face of illness," said President of the Belgian Paralympic Committee, Anne d'Ieteren. Marc Vergauwen, Secretary General of the Belgian Paralympic Committee, shared the same sentiment. “Marieke Vervoort brought the disabled into the light with her two medals at the London Paralympic Games. "Her performances as well as her spontaneous interviews after her races generated great media attention for Paralympic sport in Belgium and were a source of inspiration for our society."

Caring

Second Australian state moves one step closer to legalising assisted death

Western Australia is one step closer to legalising voluntary euthanasia for terminally ill adults after the state parliament’s lower house passed proposed government laws on Tuesday. 44 of the 59 lower house MPs voted in favour of the bill, but the vote in the upper house later this month is expected to be tighter. Should the upper house pass the proposed legislation, WA will become the second state in Australia to adopt assisted dying laws, after Victoria. The first vote came as hundreds of euthanasia supporters rallied at the parliament house to urge MPs to back the bill. The proposed laws would allow terminally ill adults who are likely to die within six months – or one year if they have a neurodegenerative condition – to take a drug to end their lives or ask for medical assistance to do so. “This bill will protect vulnerable people in ways that do not exist now,” Health Minister Roger Cook said. “This is a watershed moment. We must have the courage and confidence to uphold these freedoms for the most vulnerable in our society.” Rex Tion, one of the rally’s attendees, said his late grandfather was a “strong advocate” for assisted dying. “He expressed numerous times that he wanted his way out,” Tion told <a href="https://www.watoday.com.au/politics/western-australia/hundreds-rally-at-parliament-as-wa-euthanasia-laws-clear-first-hurdle-20190903-p52nm1.html">WAtoday</a>. “Unfortunately he never got his way, but I’m hopeful that when my time comes, I’ll at least have a choice. “Judging from what I’ve seen, there are a number of safeguards in place and I’m confident that there’s enough checks and balances to ensure that people are not being taken advantage of.” Some critics said the bill should have more safeguards in place, including a requirement for the patients to undergo a psychiatric assessment before they could access the option. “There exists the very real [opportunity] for abuse,” said Labor MP Michelle Roberts. “The fact that we need safeguards means there is something inherently worrying about the principle.” Roberts also said doctors may make mistakes in estimating life expectancy, citing the case of former Labor MP Batong Pham who unexpectedly survived a stroke. “No-one can tell me doctors don’t make mistakes.”

Caring

Magda Szubanski's question brings man to tears: “I’ll live with the decision I made”

A Canberra man who was close to facing jail time for helping his terminally ill wife take her own life has broken down on TV after he was asked a heartbreaking question from Magda Szubanski. Neil O’Riordan appeared on The Project last night, only a few short hours after the charges made against him were dropped. The 63-year-old was arrested earlier in the year and was charged with assisted suicide after he helped his wife of 25 years end her life. Shane Drumgold, the ACT Director of Public Prosecutions, said forcing Neil to face court would be “unduly harsh and oppressive”, saying he was “motivated wholly by love and compassion”. His wife Penelope Blume made the tough decision after she was diagnosed with motor neurone disease in 2016 and saw her health getting progressively worse. She then turned to her husband about ending her life. <blockquote class="twitter-tweet tw-align-center" data-lang="en-gb"> Imagine being faced with a terminally ill partner who’d made the decision to end their life. You can’t change their mind, so you decide to help fulfill that wish. Then imagine being dragged through the courts immediately afterwards. This is Neil's heartbreaking story. <a href="https://t.co/0r8ku53eDF">pic.twitter.com/0r8ku53eDF</a> — The Project (@theprojecttv) <a href="https://twitter.com/theprojecttv/status/1145983997283098624?ref_src=twsrc%5Etfw">2 July 2019</a></blockquote> “For Penelope, who’d always enjoyed good health, having a body that didn’t work anymore was catastrophic,” Neil told The Project. By March, Penelope was completely dependant on Neil for everything. It was soon after she made the painstaking decision to say goodbye. “It’s the bravest thing I’ve ever seen. I’ll live with the decision that I made,” he said. Neil said he was relieved to not be facing jail time of potentially 10 years but also wishes the ACT accepted euthanasia in the same way as Victoria. The state legalised voluntary euthanasia two weeks ago. “I grew up in what used to be a compassionate and caring country, and I guess I’ve become concerned that we display less and less of those characteristics,” said Neil. “I would hope when it comes to the issue of voluntary assisted dying that we go back to the compassion and caring country that we used to be.” Neil kept his emotions in check throughout the interview but broke down after Magda Szubanski asked him a sensitive question. “It must have been an incredibly hard thing to do,” Szubanski said. “When the final moment came, were you at peace with the decision because you knew that it was what Penelope wanted?” He laughed slightly before responding: “OK. Theoretically, yes, I was perfectly fine with it,” he said, as his voice began breaking. “Until it happened. And I was devastated. I wailed. I thought about the unfairness about why couldn’t I be doing this with my family? Why did we have to be covert?” The couple spent their final night together by going on a date but spoke openly about what was to come. “We weren’t secretive about it. I’m surrounded by people who love and care about me. People were aware of what was going to happen,” he said. “I guess the covertness comes from the fact that the way that it had to happen. I would hope there are opportunities in the future for people to perhaps do that with their family more involved for the processes to be less covert.” Neil then revealed that their final hours spent together was exactly what Penelope wanted. “She wanted to see the beach again, eat seafood again, difficult to acquire in Canberra, and mostly, I guess, we wanted to spend some time alone together,” he said. “I was prepared to and fully expected to be charged, and I guess at some level I expected to be convicted, and I’m very grateful that the court made a different decision.”

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Tragic flaw sees man use voluntary assisted dying drugs prescribed for his wife

"I don't call that a life": Couple sign up to die in double suicide pod

Aussie airline's shock collapse

What happens if you want access to voluntary assisted dying but your nursing home won’t let you?

People with dementia aren’t currently eligible for voluntary assisted dying. Should they be?

23-year-old bravely dies on her own terms

23-year-old reveals why she's chosen to end her life

People thinking of voluntary assisted dying may be able to donate their organs. We need to start talking about this

Long Covid sufferer applies for voluntary euthanasia

Aussie with terminal cancer uses time left to make her mark

Emotional scenes as NSW passes law on Voluntary Assisted Dying

Terminally ill nurse caught in desperate waiting game

225kg "Hank the Tank" bear ransacks wealthy neighbourhood

“Odiously absurd”: Animal shelter euthanises dogs over COVID-19 fears

"Crushed with guilt": Decision to put down "pandemic puppy" causes heated debate

“He taught me unconditional love”: Terminally ill teen films message before ending his own life

Facebook blocks terminally ill man from live streaming his death

Paralympic gold medallist dies by euthanasia at age 40

Second Australian state moves one step closer to legalising assisted death

Magda Szubanski's question brings man to tears: “I’ll live with the decision I made”

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Tragic flaw sees man use voluntary assisted dying drugs prescribed for his wife

"I don't call that a life": Couple sign up to die in double suicide pod

Aussie airline's shock collapse

What happens if you want access to voluntary assisted dying but your nursing home won’t let you?

People with dementia aren’t currently eligible for voluntary assisted dying. Should they be?

23-year-old bravely dies on her own terms

23-year-old reveals why she's chosen to end her life

People thinking of voluntary assisted dying may be able to donate their organs. We need to start talking about this

Long Covid sufferer applies for voluntary euthanasia

Aussie with terminal cancer uses time left to make her mark

Emotional scenes as NSW passes law on Voluntary Assisted Dying﻿﻿

Terminally ill nurse caught in desperate waiting game

225kg "Hank the Tank" bear ransacks wealthy neighbourhood

“Odiously absurd”: Animal shelter euthanises dogs over COVID-19 fears

"Crushed with guilt": Decision to put down "pandemic puppy" causes heated debate

“He taught me unconditional love”: Terminally ill teen films message before ending his own life

Facebook blocks terminally ill man from live streaming his death

Paralympic gold medallist dies by euthanasia at age 40

Second Australian state moves one step closer to legalising assisted death

Magda Szubanski's question brings man to tears: “I’ll live with the decision I made”

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Emotional scenes as NSW passes law on Voluntary Assisted Dying