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Man dies after months-long wait for at-home care

<p>A man has died after his almost year-long wait to receive his government-approved at-home care. </p> <p>Cyril Tooze, 86, was <a href="https://oversixty.com.au/health/caring/man-decides-to-end-his-own-life-after-waiting-for-at-home-care" target="_blank" rel="noopener">approved</a> for a Level 4 Home Care Package in January, but almost one year on, he was still waiting for access to the money to fund daily assistance with physical, medical and social tasks. </p> <p>After sharing his story with <em>7News</em> in October, Tooze candidly admitted that he was pursuing the avenue of voluntary assisted dying, saying at the time, "There is no hope."</p> <p>Just weeks later, Tooze has passed away. </p> <p>While in hospital after suffering a fall, Mr Tooze passed away on Friday, weighing just 46kg. </p> <p>Independent federal Mayo MP Rebekha Sharkie, who advocated for Mr Tooze to receive his government funding, said it had been an honour to have known him.</p> <p>"The man that I knew, he had such courage and such dignity to the very end," she said.</p> <p>"To the very end he wanted his situation to shed light and provide a human story for the 76,000 other older Australians who, just like him, are deteriorating, having accidents and injuring themselves while waiting for a Home Care package that they've been assessed as needing."</p> <p>"Despite a new Act being passed in the House of Representatives with urgency, there is no plan from the government to address the blown-out waiting list and the reality is that people are dying while they're waiting for Home Care."</p> <p>Federal aged care minister Anika Wells said her thoughts were with Mr Tooze's family and friends "as we mourn their loss but appreciate Cyril's life and his commitment to helping older Australians."</p> <p><em>Image credits: Nine</em></p>

Caring

For some people dying alone is not such a bad thing – here’s why

<div class="theconversation-article-body"><em><a href="https://theconversation.com/profiles/glenys-caswell-142188">Glenys Caswell</a>, <a href="https://theconversation.com/institutions/university-of-nottingham-1192">University of Nottingham</a></em></p> <p>It seems so obvious that no one should die alone that we never talk about it, but people do often die when they are alone. Sometimes they die in a way that suggests they prefer to be alone as they are coming to the end of their lives. So is it really such a bad thing to be alone when you die?</p> <p>When a person is dying in a hospital or a care home it is common for the nurses caring for them to summon their family. Many people will have the experience of trying to <a href="http://journals.sagepub.com/doi/abs/10.2190/OM.55.3.d">keep vigil beside a family member</a>. It is hard – as everyday life goes on regardless – and it can be emotionally exhausting. Sometimes, the relative will die when their family have gone to make a phone call or get a cup of tea, leaving the family feeling distressed and guilty for not being there when they died.</p> <p>There is plenty of research literature, from many countries, devoted to trying to decide <a href="http://www.sciencedirect.com/science/article/pii/S0885392415001578">what makes a good death</a>. There are differences to be found between countries, but similarities too. One similarity is a belief that <a href="http://www.sciencedirect.com/science/article/pii/S106474811600138X?via%3Dihub">no one should die alone</a>.</p> <p>This idea sits well with the view of dying that can be found in many different places. When interviewed as research participants, health professionals – and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2904589/">nurses in particular</a> – commonly say that no one should die alone. There are also many cultural references that suggest that to die alone is a bad thing. Consider, for example, the death of Ebenezer Scrooge in Dickens’s <a href="https://www.gutenberg.org/files/46/46-h/46-h.htm">A Christmas Carol</a>, or the death of Nemo, the law writer in <a href="http://www.gutenberg.org/files/1023/1023-h/1023-h.htm">Bleak House</a>. These are both sad, dark, lonely deaths of a kind to be avoided.</p> <p>Celebrity deaths, such as those of comedian and actress <a href="https://www.theguardian.com/culture/2016/apr/20/victoria-wood-dies-aged-62-comedian">Victoria Wood</a> or <a href="http://www.bbc.co.uk/news/entertainment-arts-35278872">David Bowie</a>, are described in the news as peaceful or good when they are surrounded by family. Ordinary people who die alone make the news when the person’s body is undiscovered for a long time. When this happens the death is likely to be described in <a href="http://www.sciencedirect.com/science/article/pii/S027795360300577X?via%3Dihub">negative terms</a>, such as shocking, lonely, tragic or as a sad indictment of society.</p> <h2>Some people prefer to be alone</h2> <p>Of course, it may be the case that many people would prefer to have their family around them when they are dying. But there is <a href="http://www.tandfonline.com/doi/full/10.1080/21582041.2015.1114663">evidence</a> that suggests that some people would <a href="http://www.sciencedirect.com/science/article/pii/S0277953615003482?via%3Dihub">prefer to be alone </a> as they are coming to the end of their lives.</p> <p>My own <a href="http://www.tandfonline.com/doi/full/10.1080/13576275.2017.1413542">research</a> found that while hospice-at-home nurses believe that no one should die alone, they had seen cases where a person died after their family members had left the bedside. The nurses believed that some people just want to be on their own when they are dying. They also thought that people may have a measure of control over when they die, and choose to do so when their family are not around.</p> <p>In the same study, I also talked to older people who were living alone to find out their views about dying alone. I was intrigued to learn that dying alone was not seen as something that is automatically bad, and for some of the older people it was to be preferred. For some people in this group, dying was not the worst thing that could happen – being trapped in a care home was considered to be far worse than dying alone.</p> <p>Cultural representations of dying suggest that being alone while dying is a dreadful thing. This view is supported by healthcare policy and the practices of health professionals, such as nurses. But we all know people who prefer to be left alone when they are ill. Is it so surprising then that some might wish to be alone when they are dying?</p> <p>It is time we began to talk about this and to accept that we want different things in our dying as we do in our living. Openness created through discussion might also help to remove some of the guilt that family members feel when they miss the moment of their relative’s death.<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/90034/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /></p> <p><em><a href="https://theconversation.com/profiles/glenys-caswell-142188">Glenys Caswell</a>, Senior Research Fellow, <a href="https://theconversation.com/institutions/university-of-nottingham-1192">University of Nottingham</a></em></p> <p><em>Image credits: Shutterstock </em></p> <p><em>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/for-some-people-dying-alone-is-not-such-a-bad-thing-heres-why-90034">original article</a>.</em></p> </div>

Caring

Controversial suicide capsule applications suspended amid investigation

<p>Advocacy groups behind the suicide capsule have suspended the process of taking applications amid a criminal investigation into its first use in Switzerland. </p> <p>In a statement on Sunday, they said that 371 people were “in the process of applying” to use the device, known as the Sarco, as of September 23 and applications were suspended after its first use. </p> <p>The Sarco capsule is designed to allow the person inside to push a button that injects nitrogen gas from a tank underneath into the sealed chamber, allowing the person to fall asleep and then die of suffocation in a few minutes. </p> <p>On September 23, an unidentified 64-year-old woman from the US Midwest, became the first person to use the device in a forest in the northern Schaffhausen region. </p> <p>The president of Switzerland-based The Last Resort, Florian Willet, said at the time that the woman's death was "peaceful, fast, and dignified", although those claims could not be independently verified. </p> <p>On the same day as the woman's death, Swiss Health Minister Elisabeth Baume-Schneider told parliament that use of the Sarco would not be legal.</p> <p>Willet and several others were taken into custody following her death and prosecutors opened an investigation on suspicion of incitement and accessory to suicide.</p> <p>Willet is currently being held in pretrial detention, according to The Last Resort and Exit International, an affiliate founded in Australia over a quarter-century ago. The others who were detained were released from custody. </p> <p>Exit International also clarified that their lawyers in Switzerland believed the use of the device is legal.</p> <p>“Only after the Sarco was used was it learned that Ms Baume-Schneider had addressed the issue,” the advocacy groups said in the statement Sunday.</p> <p>“The timing was a pure coincidence and not our intention.”</p> <p>Switzerland has some of the most permissive laws when it comes to assisted suicide, but the first use of the Sarco has prompted debate among lawmakers. </p> <p>Laws in the country permit assisted suicide, as long as the person takes their own life with no “external assistance” and those who help the person die do not do so for “any self-serving motive”. </p> <p><em>Image: Exit International</em></p> <p> </p>

Legal

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

<p><strong><em>Warning: This article contains discussions of suicide and depression that some readers may find upsetting</em></strong></p> <p>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.</p> <p>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.</p> <p>The man's partner, who had a terminal illness, was found eligible for the voluntary assisted dying [VAD] program in March 2023. </p> <p>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.</p> <p>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. </p> <p>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.</p> <p>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. </p> <p>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. </p> <p>ABC’s adult daughter recalled the moment she found her lifeless father after returning from running errands. </p> <p>“I thought he was asleep in the chair. I put my arms around him. He was cold,” she told the inquest. </p> <p>The woman became emotional and said that she found an empty box in the kitchen and “knew immediately it was the VAD”.</p> <p>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. </p> <p>“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.</p> <p>O'Connell said that the laws had failed to find a balance between a patient's autonomy and lethal medication safety. </p> <p>“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.</p> <p>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. </p> <p>"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. </p> <p>He added that while there was no breach of protocol or legislative processes by QVAD personnel, it was "not a well-considered law".</p> <p>O'Connell recommended the Queensland government implement an earlier draft of VAD laws that required oversight by a medical professional at all times.</p> <p>Queensland Health Minister Shannon Fentiman said the government would consider the coroner’s recommendations. </p> <p>“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.</p> <p><em>Image: Shutterstock</em></p>

Caring

Hospice nurse shares the four physical stages of dying

<p>A hospice nurse has shared the four things that happen to your body in the months, weeks and days before you die. </p> <p>Julie McFadden, who specialises in end of life care, shares videos about death and dying on social media to open up the conversation on the taboo topic, to help better prepare people for death. </p> <p>In her latest video, a viewer asked Julie what the dying process actually looks like, as the nurse explained that it all depends on how, when and why you pass away. </p> <p>However, she said there are four things that happen to the body as the end draws near. </p> <p>The first stage of dying is slowing down, which can happen up to six months before you die, with the symptoms being very "generalised". </p> <p><span style="font-size: 16px; font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; background-color: #ffffff;">Julie says, "For instance, you’re just going to be generally tired, generally lethargic, not eating and drinking as much, probably being less social."</span></p> <p><span style="background-color: #ffffff;"><span style="font-family: -apple-system, system-ui, BlinkMacSystemFont, Segoe UI, Roboto, Helvetica Neue, Arial, sans-serif;">According to Julie, the second stage is a sharp decline in strength, as she explains, "</span></span><span style="font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size: 1rem;">The closer you get to death – let’s say three months out – you’re going to be more debilitated."</span></p> <p><span style="font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size: 1rem;">"It’s going to be difficult for you to leave the house, you probably are eating and drinking very little throughout the day, and you’re sleeping more than you’re awake."</span></p> <p style="font-size: 1rem; border: 0px; font-stretch: inherit; line-height: 1.375rem; font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size-adjust: inherit; font-kerning: inherit; font-variant-alternates: inherit; font-variant-ligatures: inherit; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-position: inherit; font-feature-settings: inherit; font-optical-sizing: inherit; font-variation-settings: inherit; margin: 0px 0px 1.4rem; padding: 0px; vertical-align: baseline;">Before the last stage of life, Julie describes a period of "transitioning" which happens around a month before death and can include a phenomenon known as "visioning". </p> <p style="font-size: 1rem; border: 0px; font-stretch: inherit; line-height: 1.375rem; font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size-adjust: inherit; font-kerning: inherit; font-variant-alternates: inherit; font-variant-ligatures: inherit; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-position: inherit; font-feature-settings: inherit; font-optical-sizing: inherit; font-variation-settings: inherit; margin: 0px 0px 1.4rem; padding: 0px; vertical-align: baseline;">The nurse says, "This is when people will start seeing dead relatives, dead loved ones, dead pets, things like that."</p> <p><span style="font-size: 16px; font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; background-color: #ffffff;">She says that typically, someone "can be up and having a normal conversation with their family", all the while "saying they’re seeing their dead father in the corner who is smiling and telling them he’s coming to get them soon and not to worry."</span></p> <p style="font-size: 1rem; border: 0px; font-stretch: inherit; line-height: 1.375rem; font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size-adjust: inherit; font-kerning: inherit; font-variant-alternates: inherit; font-variant-ligatures: inherit; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-position: inherit; font-feature-settings: inherit; font-optical-sizing: inherit; font-variation-settings: inherit; margin: 0px 0px 1.4rem; padding: 0px; vertical-align: baseline;">According to Julie, this final stage of death is considered the most "distinct time in the dying process" when the body starts to fully shut down.</p> <p style="font-size: 1rem; border: 0px; font-stretch: inherit; line-height: 1.375rem; font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size-adjust: inherit; font-kerning: inherit; font-variant-alternates: inherit; font-variant-ligatures: inherit; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-position: inherit; font-feature-settings: inherit; font-optical-sizing: inherit; font-variation-settings: inherit; margin: 0px 0px 1.4rem; padding: 0px; vertical-align: baseline;">"The actively dying phase is what scares people, because they’re not used to seeing it and they don’t know what the heck’s going on," she says.</p> <p style="font-size: 1rem; border: 0px; font-stretch: inherit; line-height: 1.375rem; font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size-adjust: inherit; font-kerning: inherit; font-variant-alternates: inherit; font-variant-ligatures: inherit; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-position: inherit; font-feature-settings: inherit; font-optical-sizing: inherit; font-variation-settings: inherit; margin: 0px 0px 1.4rem; padding: 0px; vertical-align: baseline;">‘Metabolic changes’ such as a difference in skin colour, high and low temperature, or the ‘death rattle’ – a gurgling noise (also known as terminal secretions) caused by a buildup of fluids in the throat and upper airways – follow before they later pass on.</p> <p style="font-size: 1rem; border: 0px; font-stretch: inherit; line-height: 1.375rem; font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size-adjust: inherit; font-kerning: inherit; font-variant-alternates: inherit; font-variant-ligatures: inherit; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-position: inherit; font-feature-settings: inherit; font-optical-sizing: inherit; font-variation-settings: inherit; margin: 0px 0px 1.4rem; padding: 0px; vertical-align: baseline;">However, while it’s natural to find these things upsetting, Julie assures people this stage is a "normal part of death and dying", and "it’s not hurting your loved one."</p> <p>"It’s important to be educated about what death actually looks like. Movies and television don’t do it justice, then people see it in real life when it’s their loved ones and they freak out," <span style="font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size: 16px;">she said.</span></p> <p style="font-size: 1rem; border: 0px; font-stretch: inherit; line-height: 1.375rem; font-family: -apple-system, system-ui, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, sans-serif; font-size-adjust: inherit; font-kerning: inherit; font-variant-alternates: inherit; font-variant-ligatures: inherit; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-position: inherit; font-feature-settings: inherit; font-optical-sizing: inherit; font-variation-settings: inherit; margin: 0px 0px 1.4rem; padding: 0px; vertical-align: baseline;"><em>Image credits: YouTube / Instagram </em></p>

Caring

Aussie gold medallist withdraws on eve of Paralympics to be with dying mother

<p>An Australian athlete has withdrawn from the Aussie Paralympic team just hours before the event is set to begin. </p> <p>Heath Davidson, a 37-year-old wheelchair tennis player from the Mornington Peninsula, announced on Monday night that he would not be making the trip to Paris for the Games as he will spend time with his mother who has been moved into palliative care.</p> <p>Davidson announced the news in a statement on Instagram, explaining his reasoning behind the "difficult decision". </p> <p>"I have made the difficult decision to withdraw from the 2024 Paralympics. My mum has been admitted into palliative care and I want to be here at home with her during this time," he wrote. </p> <blockquote class="instagram-media" 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);" data-instgrm-permalink="https://www.instagram.com/p/C_ISWSIz4r0/?utm_source=ig_embed&utm_campaign=loading" data-instgrm-version="14"> <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> <div style="padding: 12.5% 0;"> </div> <div style="display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;"> <div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);"> </div> <div style="background-color: #f4f4f4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;"> </div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);"> </div> </div> <div style="margin-left: 8px;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"> </div> <div style="width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg);"> </div> </div> <div style="margin-left: auto;"> <div style="width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);"> </div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);"> </div> <div style="width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);"> </div> </div> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"> </div> </div> <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 style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" href="https://www.instagram.com/p/C_ISWSIz4r0/?utm_source=ig_embed&utm_campaign=loading" target="_blank" rel="noopener">A post shared by Heath Davidson (@heathdavidson13)</a></p> </div> </blockquote> <p>The Aussie Paralympic team was quick to throw their support behind Davidson, with Australian Paralympic Team Chef de Mission Kate McLoughlin saying, “Heath is a much-loved member of the Australian Paralympic Team. He adds spark to the Village with his quick wit and cheery personality.”</p> <p>“We’ll miss having him here in Paris, but we all understand that family comes first and we know he’s made the right decision for himself and his family. We want Heath to know that every member of the team is wrapping their arms around him virtually from Paris.”</p> <p>The 2024 Games in Paris would've been Davidson's third Paralympics, after won gold in the wheelchair tennis doubles alongside Dylan Alcott at the Rio De Janeiro Games in 2016, with the pair then backing it up with a silver medal in Tokyo 2021. </p> <p><em>Image credits: SportsPressJP/AFLO/Shutterstock Editorial </em></p>

Caring

Why are some people happy when they are dying?

<div class="theconversation-article-body"><em><a href="https://theconversation.com/profiles/mattias-tranberg-941050">Mattias Tranberg</a>, <a href="https://theconversation.com/institutions/lund-university-756"><em>Lund University</em></a></em></p> <p>Simon Boas, who wrote a candid account of living with cancer, passed away on July 15 at the age of 47. In a recent <a href="https://www.bbc.co.uk/news/articles/clmykzrdnljo">BBC interview</a>, the former aid worker told the reporter: “My pain is under control and I’m terribly happy – it sounds weird to say, but I’m as happy as I’ve ever been in my life.”</p> <p>It may seem odd that a person could be happy as the end draws near, but in my experience as a clinical psychologist working with people at the end of their lives, it’s not that uncommon.</p> <p>There is quite a lot of research suggesting that fear of death is at the unconscious centre of being human. William James, an American philosopher, called the knowledge that we must die <a href="https://www.penguinrandomhouse.com/books/170217/the-worm-at-the-core-by-sheldon-solomon-jeff-greenberg-and-tom-pyszczynski/">“the worm at the core”</a> of the human condition.</p> <p>But a <a href="https://www.jstor.org/stable/44577785">study</a> in Psychological Science shows that people nearing death use more positive language to describe their experience than those who just imagine death. This suggests that the experience of dying is more pleasant – or, at least, less unpleasant – than we might picture it.</p> <p>In the BBC interview, Boas shared some of the insights that helped him come to accept his situation. He mentioned the importance of enjoying life and prioritising meaningful experiences, suggesting that acknowledging death can enhance our appreciation for life.</p> <p>Despite the pain and difficulties, Boas seemed cheerful, hoping his attitude would support his wife and parents during the difficult times ahead.</p> <p>Boas’s words echo the Roman philosopher Seneca who <a href="https://en.wikisource.org/wiki/Moral_letters_to_Lucilius/Letter_61">advised that</a>: “To have lived long enough depends neither upon our years nor upon our days, but upon our minds.”</p> <p>A more recent thinker expressing similar sentiments is the psychiatrist <a href="https://www.viktorfrankl.org/">Viktor Frankl</a> who, after surviving Auschwitz, wrote <a href="https://www.penguin.co.uk/books/347571/mans-search-for-meaning-by-viktor-e-frankl/9781846046384">Man’s Search for Meaning</a> (1946) in which he lay the groundwork for a form of existential psychotherapy, with the focus of discovering meaning in any kind of circumstance. Its most recent adaptation is meaning-centred psychotherapy, which offers people with cancer a way to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4861219/">improve their sense of meaning</a>.</p> <h2>How happiness and meaning relate</h2> <p>In two recent studies, in <a href="https://doi.org/10.1017/S1478951521000262">Palliative and Supportive Care</a> and the <a href="https://doi.org/10.1177/1049909120939857">American Journal of Hospice and Palliative Care</a>, people approaching death were asked what constitutes happiness for them. Common themes in both studies were social connections, enjoying simple pleasures such as being in nature, having a positive mindset and a general shift in focus from seeking pleasure to finding meaning and fulfilment as their illness progressed.</p> <p>In my work as a clinical psychologist, I sometimes meet people who have – or eventually arrive at – a similar outlook on life as Boas. One person especially comes to mind – let’s call him Johan.</p> <p>The first time I met Johan, he came to the clinic by himself, with a slight limp. We talked about life, about interests, relationships and meaning. Johan appeared to be lucid, clear and articulate.</p> <p>The second time, he came with crutches. One foot had begun to lag and he couldn’t trust his balance. He said it was frustrating to lose control of his foot, but still hoped to cycle around Mont Blanc.</p> <p>When I asked him what his concerns were, he burst into tears. He said: “That I won’t get to celebrate my birthday next month.” We sat quietly for a while and took in the situation. It wasn’t the moment of death itself that weighed on him the most, it was all the things he wouldn’t be able to do again.</p> <p>Johan arrived at our third meeting supported by a friend, no longer able to grip the crutches. He told me that he had been watching films of him cycling with his friends. He had concluded that he could watch YouTube videos of others cycling around Mont Blanc. He had even ordered a new, expensive mountain bike. “I’ve wanted to buy it for a long time, but was tightfisted,” he said. “I may not be able to ride it, but thought it would be cool to have in the living room.”</p> <p>For the fourth visit, he arrived in a wheelchair. It turned out to be the last time we met. The bike had arrived; he had it next to the couch. There was one more thing he wanted to do.</p> <p>“If by some miracle I were to get out of this alive, I would like to volunteer in domestic care services – one or two shifts a week,” Johan said. “They work hard and it gets crazy sometimes, but they make such an incredible contribution. I wouldn’t have been able to get out of the apartment without them.”</p> <p>My experience of patients with life-threatening disease is that it’s possible to feel happiness alongside sadness, and other seemingly conflicting emotions. Over a day, patients can feel gratitude, remorse, longing, anger, guilt and relief – sometimes all at once. Facing the limits of existence can add perspective and help a person appreciate life more than ever.<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/234309/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /></p> <p><em><a href="https://theconversation.com/profiles/mattias-tranberg-941050">Mattias Tranberg</a>, Postdoctoral Research Associate, The Institute of Palliative Care, <a href="https://theconversation.com/institutions/lund-university-756">Lund University</a></em></p> <p><em>Image credits: Shutterstock </em></p> <p><em>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/why-are-some-people-happy-when-they-are-dying-234309">original article</a>.</em></p> </div>

Caring

1 in 5 deaths are caused by heart disease, but what else are Australians dying from?

<div class="theconversation-article-body"><em><a href="https://theconversation.com/profiles/garry-jennings-5307">Garry Jennings</a>, <a href="https://theconversation.com/institutions/university-of-sydney-841">University of Sydney</a></em></p> <p>Nobody dies in good health, at least in their final moments. But to think the causes of death are easy to count or that there is generally a single reason somebody passes is an oversimplification.</p> <p>In fact, in 2022, four out of five Australians had multiple conditions at the time of death listed on their death certificate, and almost one-quarter had five or more recorded. This is one of many key findings from a <a href="https://pp.aihw.gov.au/reports/life-expectancy-deaths/what-do-australians-die-from/contents/about">new report</a> from the Australian Institute of Health and Welfare (AIHW).</p> <p>The report distinguishes between three types of causes of death – underlying, direct, and contributory. An underlying cause is the condition that initiates the chain of events leading to death, such as having coronary heart disease. The direct cause of death is what the person died from (rather than with), like a heart attack. Contributory causes are things that significantly contributed to the chain of events leading to death but are not directly involved, like having high blood pressure. The report also tracks how these three types of causes can overlap in deaths involving multiple causes.</p> <p>In 2022 the top five conditions involved in deaths in Australia were coronary heart disease (20% of deaths), dementia (18%), hypertension, or high blood pressure (12%), cerebrovascular disease such as stroke (11.5%), and diabetes (11.4%).</p> <hr /> <p><iframe id="MzQHA" class="tc-infographic-datawrapper" style="border: none;" src="https://datawrapper.dwcdn.net/MzQHA/" width="100%" height="400px" frameborder="0"></iframe></p> <hr /> <p>When the underlying cause of death was examined, the list was similar (coronary heart disease 10%, dementia 9%, cerebrovascular disease 5%, followed by COVID and lung cancer, each 5%). This means coronary heart disease was not just lurking at the time of death but also the major underlying cause.</p> <p>The direct cause of death however was most often a lower respiratory condition (8%), cardiac or respiratory arrest (6.5%), sepsis (6%), pneumonitis, or lung inflammation (4%) or hypertension (4%).</p> <h2>Why is this important?</h2> <p>Without looking at all the contributing causes of death, the role of important factors such as coronary heart disease, sepsis, depression, high blood pressure and alcohol use can be underestimated.</p> <p>Even more importantly, the various causes draw attention to the areas where we should be focusing public health prevention. The report also helps us understand which groups to focus on for prevention and health care. For example, the number one cause of death in women was dementia, whereas in men it was coronary heart disease.</p> <hr /> <p><iframe id="NosVz" class="tc-infographic-datawrapper" style="border: none;" src="https://datawrapper.dwcdn.net/NosVz/" width="100%" height="400px" frameborder="0"></iframe></p> <hr /> <p>People aged under 55 tended to die from external events such as accidents and violence, whereas older people died against a background of chronic disease.</p> <hr /> <p><iframe id="1l3OS" class="tc-infographic-datawrapper" style="border: none;" src="https://datawrapper.dwcdn.net/1l3OS/" width="100%" height="400px" frameborder="0"></iframe></p> <hr /> <p>We cannot prevent death, but we can prevent many diseases and injuries. And this report highlights that many of these causes of death, both for younger Australians and older, are preventable. The top five conditions involved in death (coronary heart disease, dementia, hypertension, cerebrovascular disease and diabetes) all share common risk factors such as tobacco use, high cholesterol, poor nutrition, physical inactivity, or are risk factors themselves, like hypertension or diabetes.</p> <hr /> <p><iframe id="7Eb8O" class="tc-infographic-datawrapper" style="border: none;" src="https://datawrapper.dwcdn.net/7Eb8O/" width="100%" height="400px" frameborder="0"></iframe></p> <hr /> <p>Tobacco use, high blood pressure, being overweight or obese and poor diet were attributable to a combined 44% of all deaths in this report. This suggests a comprehensive approach to health promotion, disease prevention and management is needed.</p> <hr /> <p><iframe id="2MmGg" class="tc-infographic-datawrapper" style="border: none;" src="https://datawrapper.dwcdn.net/2MmGg/" width="100%" height="400px" frameborder="0"></iframe></p> <hr /> <p>This should include strategies and programs encouraging eating a healthy diet, participating in regular physical activity, limiting or eliminating alcohol consumption, quitting smoking, and seeing a doctor for regular health screenings, such as the Medicare-funded <a href="https://www.heartfoundation.org.au/your-heart/heart-health-checks">Heart Health Checks</a>. Programs directed at accident prevention, mental health and violence, especially gender-related violence, will address untimely deaths in the young.<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/231598/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /></p> <p><a href="https://theconversation.com/profiles/garry-jennings-5307"><em>Garry Jennings</em></a><em>, Professor of Medicine, <a href="https://theconversation.com/institutions/university-of-sydney-841">University of Sydney</a></em></p> <p><em>Image credits: Shutterstock</em></p> <p><em>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/1-in-5-deaths-are-caused-by-heart-disease-but-what-else-are-australians-dying-from-231598">original article</a>.</em></p> </div>

Body

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

<div class="theconversation-article-body"> <p><em><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></em></p> <p>Voluntary assisted dying is now lawful in <a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-all-states-heres-whats-just-happened-in-nsw-and-what-it-means-for-you-183355">all Australian states</a>. There is also <a href="https://nationalseniors.com.au/uploads/VAD-Report-correct-month-12.8.21.pdf">widespread community support</a> for it.</p> <p>Yet some residential institutions, such as hospices and aged-care facilities, are obstructing access despite the law not specifying whether they have the legal right to do so.</p> <p>As voluntary assisted dying is implemented across the country, institutions blocking access to it will likely become more of an issue.</p> <p>So addressing this will help everyone – institutions, staff, families and, most importantly, people dying in institutions who wish to have control of their end.</p> <h2>The many ways to block access</h2> <p>While voluntary assisted dying legislation recognises the right of doctors to <a href="https://theconversation.com/was-take-on-assisted-dying-has-many-similarities-with-the-victorian-law-and-some-important-differences-121554">conscientiously object</a> to it, the law is generally silent on the rights of institutions to do so.</p> <p>While the institution where someone lives has no legislated role in voluntary assisted dying, it can refuse access in various ways, including:</p> <ul> <li> <p>restricting staff responding to a discussion a resident initiates about voluntary assisted dying</p> </li> <li> <p>refusing access to health professionals to facilitate it, and</p> </li> <li> <p>requiring people who wish to pursue the option to leave the facility.</p> </li> </ul> <h2>Here’s what happened to ‘Mary’</h2> <p>Here is a hypothetical example based on cases one of us (Charles Corke) has learned of via his role at Victoria’s <a href="https://www.safercare.vic.gov.au/about/vadrb">Voluntary Assisted Dying Review Board</a>.</p> <p>We have chosen to combine several different cases into one, to respect the confidentiality of the individuals and organisations involved.</p> <p>“Mary” was a 72-year-old widow who moved into a private aged-care facility when she could no longer manage independently in her own home due to advanced lung disease.</p> <p>While her intellect remained intact, she accepted she had reached a stage at which she needed significant assistance. She appreciated the help she received. She liked the staff and they liked her.</p> <p>After a year in the facility, during which time her lung disease got much worse, Mary decided she wanted access to voluntary assisted dying. Her children were supportive, particularly as this desire was consistent with Mary’s longstanding views.</p> <p>Mary was open about her wish with the nursing home staff she felt were her friends.</p> <p>The executive management of the nursing home heard of her intentions. This resulted in a visit at which Mary was told, in no uncertain terms, her wish to access voluntary assisted dying would not be allowed. She would be required to move out, unless she agreed to change her mind.</p> <p>Mary was upset. Her family was furious. She really didn’t want to move, but really wanted to continue with voluntary assisted dying “in her current home” (as she saw it).</p> <p>Mary decided to continue with her wish. Her family took her to see two doctors registered to provide assessments for voluntary assisted dying, who didn’t work at the facility. Mary was deemed eligible and the permit was granted. Two pharmacists visited Mary at the nursing home, gave her the medication and instructed her how to mix it and take it.</p> <p>These actions required no active participation from the nursing home or its staff.</p> <p>Family and friends arranged to visit at the time Mary indicated she planned to take the medication. She died peacefully, on her own terms, as she wished. The family informed the nursing home staff their mother had died. Neither family nor staff mentioned voluntary assisted dying.</p> <h2>Staff are in a difficult position too</h2> <p>There is widespread community support for voluntary assisted dying. In a 2021 survey by National Seniors Australia, <a href="https://nationalseniors.com.au/uploads/VAD-Report-correct-month-12.8.21.pdf">more than 85%</a> of seniors agreed it should be available.</p> <p>So it’s likely there will be staff who are supportive in most institutions. For instance, in a survey of attitudes to voluntary assisted dying in a large public tertiary hospital, <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/imj.15285">88% of staff</a> supported it becoming lawful.</p> <p>So a blanket policy to refuse dying patients access to voluntary assisted dying is likely to place staff in a difficult position. An institution risks creating a toxic workplace culture, in which clandestine communication and fear become entrenched.</p> <h2>What could we do better?</h2> <p><strong>1. Institutions need to be up-front about their policies</strong></p> <p>Institutions need to be completely open about their policies on voluntary assisted dying and whether they would obstruct any such request in the future. This is so patients and families can factor this into deciding on an institution in the first place.</p> <p><strong>2. Institutions need to consult their stakeholders</strong></p> <p>Institutions should consult their stakeholders about their policy with a view to creating a “<a href="https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-021-00891-3">safe</a>” environment for residents and staff – for those who want access to voluntary assisted dying or who wish to support it, and for those who don’t want it and find it confronting.</p> <p><strong>3. Laws need to change</strong></p> <p>Future legislation should define the extent of an institution’s right to obstruct a resident’s right to access voluntary assisted dying.</p> <p>There should be safeguards in all states (as is already legislated <a href="https://documents.parliament.qld.gov.au/tp/2021/5721T707.pdf">in Queensland</a>), including the ability for individuals to be referred in sufficient time to another institution, should they wish to access voluntary assisted dying.</p> <p>Other states should consider whether it is reasonable to permit a resident, who does not wish to move, to be able to stay and proceed with their wish, without direct involvement of the institution.</p> <hr /> <p><em>The opinions expressed in this article are those of the authors and do not necessarily reflect the views of Victoria’s Voluntary Assisted Dying Review Board.</em><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" /></p> <p><em><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></em></p> <p><em>Image credits: Shutterstock</em></p> <p><em>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>.</em></p> </div>

Caring

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

<div class="theconversation-article-body"><em><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></em></p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <h2>Australian laws exclude access for dementia</h2> <p>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.</p> <p>In New South Wales, the <a href="https://legislation.nsw.gov.au/view/html/inforce/current/act-2022-017">law specifically states</a> this.</p> <p>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.</p> <p>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.</p> <h2>What happens internationally?</h2> <p>Voluntary assisted dying laws in some other countries allow access for people living with dementia.</p> <p>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.</p> <p>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.</p> <h2>But these approaches have challenges</h2> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>Some also argue that regardless of the approach taken, allowing access to voluntary assisted dying would involve unacceptable risks to a vulnerable group.</p> <h2>More thought is needed before changing our laws</h2> <p>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.</p> <p>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”.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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" /></p> <p><a href="https://theconversation.com/profiles/ben-white-15387"><em>Ben White</em></a><em>, 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></em></p> <p><em>Image credits: Getty Images </em></p> <p><em>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>.</em></p> </div>

Caring

"I thought I was gone": Doctors reveal how close Jimmy Barnes came to dying

<p>Jimmy Barnes has shared how he fought to stay alive after being forced to undergo major surgery, admitting he didn't think we would survive. </p> <p>The rock legend underwent emergency heart surgery in December 2023, after being struck down with a dangerous infection that threatened his life. </p> <p>Speaking candidly to <a href="https://9now.nine.com.au/60-minutes/jimmy-barnes-cold-chisel-illness-how-rock-icon-fought-to-stay-alive/3717a0d8-25ff-4400-bab3-f556e0b417c2" target="_blank" rel="noopener"><em>60 Minutes</em></a>, the 67-year-old said he didn't have much hope in his survival. </p> <p>"I just said to Jane, 'I don't think I'm gonna make it'. I just had this horrible morbid feeling because I've never felt this sick before. I thought I was gone," he said. </p> <p>Barnes was first admitted to hospital the day after pushing through excruciating pain in November to perform at a tribute concert for his late friend Michael Gudinski. </p> <p>After being admitted to St Vincent's Hospital in Sydney with pneumonia, a team of specialists including cardiothoracic surgeon Dr Paul Jansz, soon discovered a much more sinister health issue was at play, as an infection quickly led to endocarditis: a life-threatening inflammation of the heart.</p> <p>"[The infection] was just eating at his heart. You see an abscess cavity forming around the valve, and that would've just grown and grown and grown," Jansz said.</p> <p>"It's fatal. If he didn't die of the infection, he would've died from heart failure, from the whole valve falling apart."</p> <p>By the time he was wheeled into theatre, his doctors say he had hours to live.</p> <blockquote class="instagram-media" 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);" data-instgrm-permalink="https://www.instagram.com/reel/C3e_KPSPsC-/?utm_source=ig_embed&utm_campaign=loading" data-instgrm-version="14"> <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> <div style="padding: 12.5% 0;"> </div> <div style="display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;"> <div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);"> </div> <div style="background-color: #f4f4f4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;"> </div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);"> </div> </div> <div style="margin-left: 8px;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"> </div> <div style="width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg);"> </div> </div> <div style="margin-left: auto;"> <div style="width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);"> </div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);"> </div> <div style="width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);"> </div> </div> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"> </div> </div> <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 style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" href="https://www.instagram.com/reel/C3e_KPSPsC-/?utm_source=ig_embed&utm_campaign=loading" target="_blank" rel="noopener">A post shared by 60 Minutes Australia (@60minutes9)</a></p> </div> </blockquote> <p>"When I contemplated dying before surgery, I just thought, 'you have to savour those moments; have I told my children that I love 'em enough? Have I told Jane? The people you love, make sure you tell 'em'," Barnes said.</p> <p>Surgeons managed to fix Barnes' heart in a marathon seven-hour surgery, as the musician then faced a lengthy recovery process. </p> <p>"It's like you've been ripped in half," he said.</p> <p>"Your best friend is a pillow. If you cough, it's just agony. If you breathe too deep, it's agony. And sneezing would be the end of you."</p> <p>"But I think it's made me stronger. I want to be better than I was. I've got all this new life from this and I want to make the best of it. I want every minute to count."</p> <p>Now two months into his recovery, Jimmy is getting stronger everyday, and has nothing but thanks for his loved ones that stayed by his side during the difficult journey. </p> <p>"Without a doubt, the fact that my family were there and Jane was there, I wasn't going anywhere. I wanted to spend every breath I could spend with Jane. And if that meant fighting to live longer, I was going to do it."</p> <p>When asked about his highly-anticipated <a href="https://oversixty.com.au/entertainment/music/huge-news-for-jimmy-barnes-fans" target="_blank" rel="noopener">return to the stage</a> in April, he joked it would be his version of resurrection. </p> <p>He said, "I miss being on stage, I have to do it, I don't have a choice. I need to get out there and scream, it just clears the emotions out of you."</p> <p><em>Image credits: 60 Minutes </em></p>

Caring

"I'm lowkey dying": Brave young woman with terminal illness shares her final wish

<p>Samantha Bulloch was given three years to live after she was diagnosed with gut-wrenching stage four bowel cancer at the young age of 28. </p> <p>A year later, Bulloch has shared a heartfelt plea on social media in hopes of meeting her idol- pop star Taylor Swift. </p> <p>The Swiftie has scored a ticket to Taylor's final show in Sydney on the 26th of February, but she’s calling on “anyone to hook a sister up” so she can meet-and-greet the singer backstage. </p> <p>“I’m low key dying and honestly this would just make my year,” she said in a video shared to TikTok. </p> <p>“I’m going out on a limb here so I’m just shooting my shot and we’re going to see what happens.</p> <p>“If anyone has any connections... I would love you forever.”</p> <p>Bulloch has been a fan of the megastar since she was 15 years old. </p> <p>“Taylor means so much to me, and I’d love the opportunity to tell her just how much of an impact she’s made on my life,” she told <em>7Life</em>. </p> <p>“I’ve loved her since I was 15, and her music has seen me through so many chapters in my life — including this one.</p> <p>“I love that her music transcends all kinds of walks of life, and so many of us connect with it so personally, despite the differences in our situations.</p> <p>“She has a real talent for making you feel less alone.I recently got a new tattoo of the lyric, ‘For the hope of it all’, from her song called August.</p> <p>“I adopted that lyric during my experience with cancer. I’m choosing to live for the hope of it all.”</p> <p>As she faces terminal cancer, Bulloch said that she is determined to live the rest of her life to the fullest. </p> <p>"I’m hoping and praying for many more years than what I’ve been given. But if not, I intend to try and maximise these few I’ve got left to the best of my ability," she said. </p> <p>“Thankfully I’ve always been quite a positive and hopeful person, and that hasn’t left me during this experience.”</p> <p>Bulloch was diagnosed with terminal cancer in 2023, after experiencing low iron levels, fatigue and blood in her stool. </p> <p>She is currently on a chemotherapy regime and an immunotherapy drug and added that she also hopes to tick off many of her bucket list destinations this year, including visiting UK, Paris, New York and Tasmania. </p> <p>“My doctor has said I can, providing the treatment I’m on now works," the hopeful 29-year-old said. </p> <p>“Thankfully treatment has been working so hopefully in a few months I’ll be able to do that."</p> <p><em>Images: Samantha Bulloch </em></p>

Caring

"Such a tragedy": Shannon Noll pulls dying teen from car wreck

<p>Singer Shannon Noll ha found himself at the centre of a tragic accident on a remote stretch of Ellangowan Road, just kilometres away from his northern New South Wales home. The incident involved an 18-year-old couple, Kobi Roberts-Walker and Jaselle Melrose, whose car veered off the road, crashing into a tree in a horrifying double fatal accident.</p> <p>Noll, best known for his time on <em>Australian Idol</em>, was on his way back to his family property when he became one of the first responders to the accident. The singer, faced with a burning car and desperate circumstances, didn't hesitate to take action. He bravely dragged the dying Jaselle Melrose from the wreckage and performed CPR in an attempt to save her life.</p> <p>In a statement to <a href="https://www.dailytelegraph.com.au/news/nsw/two-teenagers-die-in-fiery-crash-after-hitting-tree/news-story/3bdf4004457b59e2078bff3caf0b3749" target="_blank" rel="noopener">The Daily Telegraph</a>, Noll expressed the gravity of the situation, saying, “Last night was such a tragedy. I just reacted and did what I could to assist the young woman at the scene. Our prayers and condolences go out to their families at this terribly sad time.”</p> <p>Noll's manager, Paul Paoliello, revealed that the singer was deeply affected by the incident: “I can confirm Shannon did provide assistance last night and he is obviously quite shaken up by what happened,” Paoliello said.</p> <p>The local community, already shaken by the accident, has been left heartbroken over the loss of two young lives.</p> <p>Volunteer rescue workers who were present at the scene attested to Noll's immediate and courageous response. Describing the situation, a witness mentioned that Noll "literally ran" to the car engulfed in flames, pulling the passenger away before emergency services arrived. Others at the scene acknowledged Noll's determination to make a difference and lauded his hands-on approach.</p> <p>The victims, Kobi Roberts-Walker and Jaselle Melrose, were both 18 years old and deeply connected to their local community. Roberts-Walker, known by many in the area, had recently posted their car for sale, citing their anticipation of a growing family. Melrose, a recent graduate of Casino High School, was recognised for her academic achievements.</p> <p>The crash occurred on a notoriously hazardous section of Ellangowan Road, known for its narrow roadway and limited lighting. Locals have raised concerns about the safety of this stretch, and the New South Wales Police are currently investigating the incident to determine the cause and whether speed played a role.</p> <p><em>Images: Facebook</em></p>

Caring

"I'm home": Paramedics grant dying grandmother's final wish

<p>Dedicated paramedics have made an emotional pit stop at the beach for a dying grandmother who wanted to see the ocean one last time. </p> <p>The ambos were transporting 94-year-old Shirl McHugh to the hospital when the grandmother asked to make a stop at Newcastle's Bar Beach: her favourite spot. </p> <p>Shirl told the paramedics she wanted to "feel the salt breeze one last time", as she had a feeling she wouldn't be leaving the hospital. </p> <p>When they stopped at the beach, the great-grandmother relaxed and told paramedic Brittaney Banks, "I'm home".</p> <p>Thankfully, Ms McHugh was able to bask in a beautifully fine day to take in the famous stretch of beach, which is busy with swimmers, surfers, lifesavers and families most days.</p> <p>Shirl, who was a respected member of her church as well as the wider community, died just 15 hours after her stop at the ocean. </p> <p>The NSW ambulance shared Shirl's story to their Instagram page, with paramedic Brittaney Banks recalling the emotional day. </p> <blockquote class="instagram-media" 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);" data-instgrm-permalink="https://www.instagram.com/p/CyK0y_Ns8j5/?utm_source=ig_embed&utm_campaign=loading" data-instgrm-version="14"> <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> <div style="padding: 12.5% 0;"> </div> <div style="display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;"> <div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);"> </div> <div style="background-color: #f4f4f4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;"> </div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);"> </div> </div> <div style="margin-left: 8px;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"> </div> <div style="width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg);"> </div> </div> <div style="margin-left: auto;"> <div style="width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);"> </div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);"> </div> <div style="width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);"> </div> </div> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"> </div> </div> <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 style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" href="https://www.instagram.com/p/CyK0y_Ns8j5/?utm_source=ig_embed&utm_campaign=loading" target="_blank" rel="noopener">A post shared by NSW Ambulance (@nswambulance)</a></p> </div> </blockquote> <p>"When I opened the doors of the ambulance, Shirley said 'I'm home', and breathed a sigh of relaxation… it's one of those jobs I will remember forever," Brittaney said. </p> <p>Her granddaughter expressed her gratitude on social media, thanking the ambulance crew for respecting the special request from the stylish great-grandmother known to many as 'Shirl the Pearl'.</p> <p>"Thank you ladies for fulfilling my Nan's final wish on her way home," Emma Brown wrote. </p> <p>"She had such a beautiful soul, it was really my pleasure," Ms Banks replied.</p> <p>"I am so glad we could bring her home."</p> <p><em>Image credits: Instagram</em></p>

Caring

Dying husband and wife spend their final days holding hands

<p>A married couple have spent their final days holding hands in hospital, after their beds were pushed next to each other so they could be side-by-side as they both passed away. </p> <p>The couple from Tennessee, Tommy and Virginia Stevens, both 91, were both admitted to the Vanderbilt hospital for unrelated medical issues. </p> <p>Tommy, who was suffering with Alzheimer’s disease, had been struck down with aspiration pneumonia and sepsis, and was transferred to the hospital's palliative care unit. </p> <p>The same morning, Virginia suffered a fall as she sustained six broken ribs, a spinal fracture, and a hip injury, and was admitted to the hospital's trauma unit. </p> <p>As Tommy and Virginia's family were struggling to split time between the two wards, hospital staff were able to pull strings for the longtime lovebirds to be roomed side-by-side.</p> <p>Virginia was moved into a room near Tommy’s in the Palliative Care Unit, and her hospital bed was scooted against his so she could comfort him as his health continued to get worse, the hospital said.</p> <p>“He was awake when she came in,” their daughter Karen Kreager said.</p> <p>“His eyes were open. He wasn’t communicating a lot — just in small whispers. But he knew that she was there and that she was going to be right beside him. They haven’t stopped holding hands the whole time. She won’t let go of him.” </p> <p>“It reminds me of why we do this work,” Mohana Karlekar, MD, medical director of VUMC’s adult Palliative Care Program told local news station <em><a href="https://www.wsmv.com/2023/09/19/she-wont-let-go-him-vanderbilt-helps-hospitalized-wife-comfort-dying-husband/" target="_blank" rel="noopener">WSMV</a></em>.</p> <p>“We take care of people — husbands, wives, mothers, fathers — not patients. We brought this family together during one of their most difficult times with little effort on our part. It involved a call, seeing an extra patient that day and some conversations.”</p> <p>“From the time we brought Mrs. Stevens over, she held her husband’s hand and fussed in a very loving way with him,” Karlekar said.</p> <p>“She was able to tell me Monday that she was at peace with what was going on, and she wanted to be there until the end.”</p> <p>Tommy died on September 8th, just a day before the couple’s 69th anniversary, and Virginia died a few days later on September 17th.</p> <p><em>Image credits: Vanderbilt University Medical Center and The Stevens Family</em></p>

Caring

Terminally ill teacher convicted of child abuse granted end-of-life permit

<p>A convicted child abuser from Adelaide, who was imprisoned for his acts of paedophilia against students during his tenure as a music teacher, has been authorised to pursue assisted dying, according to an exclusive report by <a href="https://www.9news.com.au/national/exclusive-adelaide-news-jailed-paedophile-teacher-malcolm-day-given-end-of-life-permit-voluntary-assisted-dying/cab7e95c-f3b1-4dbd-ae0d-cc8dbfee22c0" target="_blank" rel="noopener">9News</a>.</p> <p>Malcolm Day, aged 81, has emerged as the first incarcerated individual in Australia to receive approval for voluntary assisted dying following a terminal illness diagnosis, reportedly linked to cancer.</p> <p>Having received a 20-year prison sentence last June, Day's remaining term spans 17 years.</p> <p>Navigating the 11-step process required for accessing voluntary assisted dying in South Australia, Day's application is reported to be in its concluding stages, potentially reaching completion within the next few days.</p> <p>Dr Philip Nitschke, the director of the pro-euthanasia organisation Exit International, acknowledged that an incarcerated individual availing themselves of this scheme was an inevitable eventuality.</p> <p>"By the sounds of it, he satisfies all the conditions of the South Australian assisted dying legislation," Dr Nitschke told 9News. "So there should be no impediment… he should be given the option that any other person would have if they were terminally ill."</p> <p>During the 1980s, Day, while serving as a music teacher in South Australia, inflicted profound and lasting harm upon two of his students. After grooming and exploiting his victims, he vehemently refuted all allegations when investigated by educational authorities.</p> <p>When Day was sentenced, his legal representative, Stephen Ey, acknowledged the real possibility of his client passing away behind bars, saying at the time that it was "a real prospect... given his age."</p> <p>According to the latest data from SA Health, since the initiation of voluntary assisted dying in January of this year, 39 terminally ill residents of South Australia have opted to peacefully conclude their lives after being granted the necessary permits.</p> <p><em>Image: Nine News</em></p>

Legal

“My heart is breaking”: The Wiggles perform for dying young fan

<p dir="ltr">The Wiggles have made a young girl’s dreams come true, as they stood by her and performed just hours before she died. </p> <p dir="ltr">Purple Wiggle Lachlan Gillespie, new Blue Wiggle Lucia Field, and Dorothy the Dinosaur visited young Zahra’s bedside in Westmead Children’s Hospital, just before she passed away last month to perform a sweet rendition of <em>Twinkle Twinkle</em>.</p> <p dir="ltr">Earlier this week, Zahra’s mum posted the sweet video on TikTok, while sharing the story of how Zahra was diagnosed with Leigh syndrome, a rare neurometabolic disorder that affects the central nervous system.</p> <p dir="ltr">“On Zahra’s last day, she got a special visit from her fav Wiggles,” Zahra’s mum wrote in the video shared on her TikTok account. </p> <div class="embed" style="font-size: 16px; box-sizing: inherit; margin: 0px; padding: 0px; border: 0px; vertical-align: baseline; outline: none !important;"><iframe class="embedly-embed" style="box-sizing: inherit; margin: 0px; padding: 0px; border-width: 0px; vertical-align: baseline; width: 611px; max-width: 100%; outline: none !important;" title="tiktok embed" src="https://cdn.embedly.com/widgets/media.html?src=https%3A%2F%2Fwww.tiktok.com%2Fembed%2Fv2%2F7254527205701733633&display_name=tiktok&url=https%3A%2F%2Fwww.tiktok.com%2F%40keish_el%2Fvideo%2F7254527205701733633&image=https%3A%2F%2Fp16-sign-sg.tiktokcdn.com%2Fobj%2Ftos-alisg-p-0037%2FoACeAheW25teaIoFQJHPEC2YgpcNAKrzDgaksj%3Fx-expires%3D1689325200%26x-signature%3D8aPR7s6As4g3eiheXA%252B7PmnZSBk%253D&key=59e3ae3acaa649a5a98672932445e203&type=text%2Fhtml&schema=tiktok" width="340" height="700" frameborder="0" scrolling="no" allowfullscreen="allowfullscreen"></iframe></div> <p dir="ltr">In the caption, she added, “This day was so special to us, Zahra was obsessed with the Wiggles and for them to come and see her is a memory we will never forget.”</p> <p dir="ltr">She went on to say that on her last day on earth, her doctors and parents gave her “one full day” off the tube where she got to do “all her favourite things with family and friends”, including the Wiggles.</p> <p dir="ltr">Lucia, who is the daughter of original Blue Wiggle Anthony Field, commented, “Lachy and I were so grateful to have met your beautiful family. May your beautiful little girl be happily resting”.</p> <p dir="ltr">The video has racked up over two million views, with many sharing their condolences for the grieving family. </p> <p dir="ltr">One user said, “I can't handle it. I'm so sorry… my heart breaks for you.”</p> <p dir="ltr">Another emotional viewer wrote, “RIP you little angel, you have earned your wings.”</p> <p dir="ltr">One person wrote that they were praying for Zahra and her family, and her grieving mother responded, “Thank you so much for those prayers. I know they would have kept her with us for as long as she could.”</p> <p dir="ltr" style="line-height: 1.38; margin-top: 0pt; margin-bottom: 18pt;"><em>Image credits: TikTok</em><span id="docs-internal-guid-efb41070-7fff-f887-2ec2-5f55686b6eca"></span></p>

Caring

23-year-old bravely dies on her own terms

<p> A terminally ill young woman from Adelaide has ended her life under the state’s voluntary assisted dying laws.</p> <p>In a funeral notice published in the<em> Adelaide Advertiser</em>, the family of Lily Thai said she died at the Flinders Medical Centre on June 21.</p> <p>“Much loved daughter of Kate and Le. Beloved granddaughter, niece and cousin. Treasured friend to many,” the family wrote.</p> <p>The family have shared that her funeral will be held at Centennial Park Cemetery on June 29.</p> <p>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.</p> <p>Thai suffered from Ehlers Danlos Syndrome (EDS) – a genetic condition that left her completely bedridden and in constant pain.</p> <p>Her powerful story touched thousands nationwide before she passed away.</p> <p>Thai had long wished to take her own life with dignity after a battle with such a debilitating condition.</p> <p>“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.</p> <p>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”</p> <p>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.</p> <p><em>Image credit: The Advertiser / TikTok</em></p>

Caring

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

<p>23-year-old Lily Thai has made the crippling decision to end her life.</p> <p>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.</p> <p>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.</p> <p>“I realised that I can’t have any more anaesthesia, so I (couldn’t) have any more feeding tube changes (or) surgeries,” Thai told <em>The Advertiser</em>.</p> <p>EDS is a debilitating genetic condition which has left the 23-year-old completely bedridden and in constant pain.</p> <p>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”.</p> <p>Doctors will administer an IV medication that will terminate the young woman’s life within 10 seconds.</p> <p>“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.”</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>Through her rehab period, hospitals were under strict Covid-19 protocols, so Thai suffered alone without any visitors.</p> <p>“I couldn’t stand not seeing my dad, so I got discharged early,” she said.</p> <p>She was later diagnosed with auto-immune autonomic ganglionopathy — a rare condition where the body’s immune system attacks the nervous system.</p> <p>“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.</p> <p>“He suspected I had a type of motor neurone disease.”</p> <p>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”.</p> <p>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. </p> <p>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.</p> <p>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.</p> <p>The pair say young people with a terminal illness often mourn the “life (they) never got to have.”</p> <p>“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.”</p> <p>“You never do the normal things like going to your high school graduation,” Thai said.</p> <p>“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.</p> <p>Holland has vowed to do everything in her power to make Thai’s last days in hospice more bearable.</p> <p>“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.</p> <p>Thai has been able to plan parts of her own funeral and has been busy saying goodbye to family and friends.</p> <p>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.</p> <p><em>Image credit: Facebook</em></p>

Caring

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

<p><a href="https://theconversation.com/profiles/robert-ray-1441988">Robert Ray</a>, <em><a href="https://theconversation.com/institutions/deakin-university-757">Deakin University</a></em></p> <p>The number of people needing an organ transplant vastly outweighs the number of organs available.</p> <p><a href="https://www.donatelife.gov.au/sites/default/files/2023-02/OTA%202022%20Donation%20and%20Transplantation%20Activity%20Report.pdf">In 2022</a> there were about 1,800 Australians waiting for an organ but only about 1,200 people received an organ transplant.</p> <p>But in <a href="https://onlinelibrary.wiley.com/doi/10.1111/imj.16085">a recent paper</a>, I outline one unexplored option for increasing the number of potential organ donors in Australia – transplanting organs from people undergoing voluntary assisted dying. This would involve transplanting organs only after someone had died.</p> <p>It’s estimated <a href="https://jamanetwork.com/journals/jama/article-abstract/2616383">about 10%</a> of people eligible for voluntary assisted dying are likely to be medically suitable to donate their organs. Based on <a href="https://www.safercare.vic.gov.au/sites/default/files/2022-09/Voluntary%20Assisted%20Dying%20Review%20Board%20Report%20of%20Operations%20July%202021-June%2022_FINAL.pdf">Victorian figures</a> alone, this could lead to about an extra 40 potential organ donors each year.</p> <p>This type of organ donation has taken place <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9297969/">for more than 20 years</a> in Europe, and more recently in Canada.</p> <p>Organs transplanted from donors undergoing voluntary assisted dying <a href="https://jamanetwork.com/journals/jamasurgery/article-abstract/2769118">have</a> <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.16267">similar</a> <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.16971">success rates</a> to more traditional donations.</p> <p>Yet, this is a discussion we’ve yet to have in Australia. Here are some of the ethical and practical issues we need to start talking about.</p> <h2>Is this ethical? It’s tricky</h2> <p>The main ethical challenge is ensuring a person isn’t motivated to end their life prematurely so they can donate their organs.</p> <p><a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">Internationally</a>, <a href="https://jme.bmj.com/content/42/8/486.short">this challenge</a> is mainly addressed by having <a href="https://www.sciencedirect.com/science/article/pii/S1600613523000291">independent assessments</a> by multiple doctors. This is to ensure the motivation is genuine and honest, much like assessing someone before voluntary assisted dying.</p> <p>Similarly, it is important the doctor of someone undergoing voluntary assisted dying isn’t persuading them to donate an organ. This means any doctor overseeing voluntary assisted dying may be limited in how much they can discuss organ donation with their patient.</p> <p>Again, this <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">has been managed internationally</a> by having separate, independent doctors overseeing organ donation and voluntary assisted dying, <a href="https://www.cmaj.ca/content/190/44/E1305.short">without one influencing</a> the other.</p> <figure class="align-center zoomable"><a href="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img 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><span class="caption">Is this what people really want, with so little time left?</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-woman-laying-on-bed-hospital-1054837748">Shutterstock</a></span></figcaption></figure> <p>Organ donation may also affect the way voluntary assisted dying is conducted, which <a href="https://www.sciencedirect.com/science/article/pii/S1600613523000291">may impact</a> participants’ very limited quality of life.</p> <p>That’s because determining if someone is eligible to donate an organ involves a number of <a href="https://jme.bmj.com/content/43/9/601.short">investigations</a>. These may include blood tests, radiology (imaging) and numerous clinical encounters to exclude diseases such as cancer, which would prevent someone donating their organs. These investigations may be exhausting but necessary.</p> <p>This burden must be weighed against the participant’s wishes and motivation to donate their organs. So people must also be informed of the impact organ donation will have on their limited life left.</p> <p>The choices of people considering this option must be respected and they must be given multiple opportunities to review their decision, without undue influence or bias.</p> <h2>Practical issues: coordination, location, regulation</h2> <p>Practically, combining organ donation and voluntary assisted dying is <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">challenging</a>. This includes the difficulty organising and coordinating specialists in organ donation, voluntary assisted dying and transplantation.</p> <p>This is why, internationally, organ donation of this nature mostly occurs in large hospitals, where it’s easier to coordinate.</p> <p>So if people want to donate an organ this way, they may spend their last moments in an unfamiliar environment.</p> <figure class="align-center zoomable"><a href="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img 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><span class="caption">People may have to be moved to a large hospital with the facilities and staff on hand.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/surgeon-assistant-team-transport-move-stretcher-2062330820">Shutterstock</a></span></figcaption></figure> <p>Efforts have been made <a href="https://jamanetwork.com/journals/jamasurgery/article-abstract/2776765">internationally</a> to prioritise these valuable last moments by giving people the choice of where voluntary assisted dying occurs (<a href="https://www.cmaj.ca/content/190/44/E1305.short">such as their home</a>). But this currently only occurs in a minority of cases and increases the complexity of organ donation.</p> <p>Regulating the process is also essential to developing a safe, trustworthy and effective program. Ideally a centralised organisation such as Australia’s national <a href="https://www.donatelife.gov.au">Organ and Tissue Authority</a> would organise, undertake and regulate this.</p> <p>However, this may be challenging given voluntary assisted dying practices are specific to each state.</p> <h2>The challenges ahead</h2> <p>If someone considering voluntary assisted dying wants to donate their organs and is deemed eligible, there is currently <a href="https://onlinelibrary.wiley.com/doi/10.1111/imj.16085">no legal barrier in Australia</a> to stop them.</p> <p>What might prevent them is how their doctor responds, and whether there are the services and organisations willing to fulfil this request ethically and practically.</p> <p>The next step in considering this form of organ donation is to discuss the prospect publicly.</p> <p>Every extra donated organ is potentially lifesaving. So we should make every effort to consider potential safe and ethical ways to increase donation and transplantation rates.<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" /></p> <p><em><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></em></p> <p><em>Image credit: Shutterstock</em></p> <p><em>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>.</em></p>

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

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