tag:theconversation.com,2011:/nz/topics/talking-about-death-and-dying-1905/articles
Talking about death and dying – The Conversation
2022-01-10T13:36:42Z
tag:theconversation.com,2011:article/173614
2022-01-10T13:36:42Z
2022-01-10T13:36:42Z
End-of-life conversations can be hard, but your loved ones will thank you
<figure><img src="https://images.theconversation.com/files/439730/original/file-20220106-23-1if8ay.jpg?ixlib=rb-1.1.0&rect=44%2C0%2C2028%2C1381&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">You can start these conversations simply, like saying, "I need to think about the future. Can you help me?"</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/senior-couple-holding-hands-royalty-free-image/200447695-001?adppopup=true">Richard Ross/The Image Bank via Getty Images</a></span></figcaption></figure><p>Death – along with taxes – is one of life’s few certainties. Despite this inevitability, most people dread thinking and talking about when, how or under what conditions they might die. </p>
<p>They don’t want to broach the topic with family, either, for fear of upsetting them. Ironically, though, talking about death “early and often” can be the greatest gift to bestow on loved ones.</p>
<p>As a <a href="https://www.bu.edu/sociology/profile/deborah-carr/">sociologist</a> who has studied end-of-life issues for more than two decades, I’ve learned that people know they should talk about death honestly and openly, but surprisingly few do. In fact, <a href="https://doi.org/10.3928/02793695-20171219-03">one 2021 study</a> showed that while 90% of adults say that talking to their loved ones about their end-of-life wishes is important, only 27% have actually had these conversations.</p>
<p>It’s frightening to think about our own suffering, or our loved ones’ distress. But everyone should talk about and prepare for death precisely because we want to minimize our own suffering at the end of life, and soften the anguish of loved ones left behind.</p>
<h2>No time to plan</h2>
<p>These conversations are more urgent now than ever, as the COVID-19 pandemic has <a href="https://doi.org/10.1001/jama.2021.5469">changed how Americans die</a>. </p>
<p>For the past several decades, most adults have died from <a href="https://www.cdc.gov/injury/wisqars/LeadingCauses.html">chronic illnesses</a> like heart disease, cancer and lung disease. The time between diagnosis and death for people with these conditions can be months or even years. That gives patients and their families ample time to share their feelings, resolve unfinished business, and make practical preparations for death – including <a href="https://theconversation.com/online-tools-put-will-writing-in-reach-for-most-people-but-theyre-not-the-end-of-the-line-for-producing-a-legally-binding-document-173569">estate planning</a>, <a href="https://www.nia.nih.gov/health/advance-care-planning-health-care-directives">advance care planning</a> and even planning a celebration of life that bears the dying patient’s creative imprint. </p>
<p>But when the pandemic struck in 2020, COVD deaths began to occur quickly and unexpectedly, with many patients <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/928729/S0803_CO-CIN_-_Time_from_symptom_onset_until_death.pdf">dying just days</a> after they felt their first symptoms. Their families were <a href="https://doi.org/10.1080/08959420.2020.1764320">robbed of final moments together</a> and often had no documents in place to guide the <a href="https://doi.org/10.1080/08959420.2020.1824540">patient’s health care</a> or the distribution of their possessions. This suddenness, isolation and lack of preparedness all are hallmarks of a “<a href="https://doi.org/10.1080/08959420.2020.1764320">bad death</a>” for both the patient and their family.</p>
<h2>What to cover</h2>
<p><a href="https://doi.org/10.1093/geroni/igx012">Advance care planning</a>, which typically involves <a href="https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/living-wills/art-20046303">a living will</a> and <a href="https://www.tuftsmedicalcenter.org/patient-care-services/patient-rights/health-care-proxy-medical-decision-making">a health care proxy</a>, allows people to articulate which medical treatments they want or don’t want at the end of life.</p>
<p>A living will formally articulates preferences for care, such as whether to use comfort measures like <a href="https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care">hospice and palliative care</a>, or more invasive measures like <a href="https://www.caregiver.org/resource/advanced-illness-feeding-tubes-and-ventilators/">feeding tubes and ventilators</a>. Documenting these preferences when the patient is still able to make those decisions helps to ensure they die on their own terms – a cornerstone of the “<a href="https://pubmed.ncbi.nlm.nih.gov/12866391/">good death</a>.” </p>
<p>Appointing a <a href="https://doi.org/10.1177/002214650704800206">health care proxy</a> when still relatively young and healthy gives people an opportunity to decide who will be tasked with their end-of-life decision-making. It also clarifies loved ones’ responsibilities and can fend off arguments that could arise around the deathbed. Having these discussions early also prevents panicked choices when someone’s health takes a dramatic turn for the worse. </p>
<figure class="align-center ">
<img alt="A woman and her older mother sit on a porch, drinking coffee." src="https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">End-of-life conversations can ease suffering for families, not just patients.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/senior-mother-and-adult-daughter-having-coffee-on-royalty-free-image/1311072998?adppopup=true">MoMo Productions/DigitalVision via Getty Images</a></span>
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<p>End-of-life discussions also help you to <a href="https://onlinelibrary.wiley.com/doi/10.1111/j.1751-9004.2011.00416.x">construct your own legacy</a>. In “<a href="https://www.worldcat.org/title/death-and-identity/oclc/2318294">Death and Identity</a>,” a classic book in death studies, sociologist Robert Fulton observed that “preserving rather than losing … personal identity” is a critical aspect of the dying process. Being treated <a href="https://doi.org/10.7326/0003-4819-132-10-200005160-00011">like a “whole person</a>” is a core component of a good death, and honest discussions are a key to maintaining your unique identity, even at the end of life.</p>
<p>Conversations also help us share how we’d like to be celebrated after we’re gone. This might be as simple as dictating the music, food, and photo or video displays for a memorial service; where to spread ashes; or charities for mourners to support. Some people take more ambitious steps at leaving behind a legacy, such as penning an autobiography or leaving behind videos for relatives. Creating a “post-self” that lingers years after the body has died can be a cherished gift to families.</p>
<h2>Getting started</h2>
<p>Broaching these conversations can be awkward or unnerving, but it doesn’t have to be. Death is a natural and inevitable part of life and should be approached as such. <a href="https://knowablemagazine.org/article/health-disease/2019/end-of-life-care">I have argued</a> that the end of life is a <a href="https://www.annualreviews.org/doi/abs/10.1146/annurev-soc-073018-022524">stage</a>, just as childhood, adolescence and old age are.</p>
<p>Each stage teaches lessons for the others that lie ahead.</p>
<p>Children learn skills in school that they’ll need to enter the workforce. Teens learn how to navigate romantic relationships as preparation for the future. Adults of all ages can learn about hospice and end-of-life medical care, make preparations for passing on their inheritance and discuss how they’d like to be honored in death. These steps can help attain an end of life marked by peace and self-directedness, rather than strife and the loss of autonomy.</p>
<figure class="align-center ">
<img alt="An older Black woman writes as she sits at a dining room table in front of a china cabinet." src="https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Recording memories and ideas for a memorial service can help you craft your own legacy.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/woman-working-at-home-royalty-free-image/1062487638?adppopup=true">Lauren Mulligan/Moment via Getty Images</a></span>
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<p>Ample resources are available to guide these conversations. Organizations like <a href="https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-ConvoStarterKit-English.pdf">The Conversation Project</a> – not related to <a href="https://theconversation.com">The Conversation</a> – have created guides for productive end-of-life discussions. Advance care planning documents ranging from <a href="https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/">living wills</a> to the “<a href="https://fivewishes.org/">Five Wishes</a>” program, which helps clarify people’s values about how they’d like to spend their final days, can be a good starting point.</p>
<p>A simple introduction like “I need to think about the future. Will you help me?” is a good icebreaker. And the first conversation eases the path to future chats, because changes in physical health, family relations and mental sharpness may necessitate revisions in end-of-life plans.</p>
<p>By discussing these issues during calm times, such as after a holiday get-together or birthday dinner, we can feel prepared and empowered as we and our families approach the inevitable.</p><img src="https://counter.theconversation.com/content/173614/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Deborah Carr has received research funding from Borchard Foundation, Department of Labor, National Institutes of Health, and RRF Foundation for Aging.
</span></em></p>
When you prepare to talk about end-of-life decisions and the legacy you want to leave behind, try thinking about them as gifts you bestow to family and friends.
Deborah Carr, Professor of Sociology and Director of the Center for Innovation in Social Science, Boston University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/137496
2020-05-01T04:10:41Z
2020-05-01T04:10:41Z
Dying old, dying young – death and ageism in the times of Greek myth and coronavirus
<figure><img src="https://images.theconversation.com/files/331677/original/file-20200430-42962-f0wj7s.jpg?ixlib=rb-1.1.0&rect=44%2C36%2C4876%2C2648&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://images.unsplash.com/photo-1505599942851-eb61ad08d9e2?ixlib=rb-1.2.1&ixid=eyJhcHBfaWQiOjEyMDd9&auto=format&fit=crop&w=2716&q=80">Dominik Scythe/Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p>The loss of life from the spread of coronavirus has been on an enormous scale. In the USA more Americans have now died <a href="https://www.nbcnews.com/politics/meet-the-press/coronavirus-death-toll-surpasses-u-s-casualties-vietnam-war-just-n1195176">from COVID-19 than in the entire Vietnam war</a>. </p>
<p>Notwithstanding some poignant and passionate speeches by particular individuals (notably <a href="https://www.governor.ny.gov/news/video-audio-rush-transcript-governor-cuomo-amid-ongoing-covid-19-pandemic-being-first-responder">New York Governor Andrew Cuomo</a>), much of the discourse has focused on the economic, political and policy division, rather than grief for the victims.</p>
<p>This broadly sanguine response might be due to perceptions that it is mostly older people dying from coronavirus, although <a href="https://www.abc.net.au/news/2020-04-04/more-younger-people-dying-and-in-icu-from-coronavirus-covid-19/12121772">experts warn</a> younger people can die too. Witness the relief at <a href="https://www.theage.com.au/world/europe/experts-fail-to-find-a-single-case-of-children-passing-virus-to-adults-20200430-p54ohi.html">new reports</a> that children under 10 have not accounted for a single transmission of the virus. The deaths of older people have been <a href="https://www.nytimes.com/2020/03/22/opinion/coronavirus-elderly.html">comparatively discounted</a>, not the least because many were socially isolated even before the pandemic. </p>
<p>The Greeks of antiquity reflected on the death of the young and the old in some very creative mythical narratives. Greek myth reflects on and reminds us of some of the less attractive characteristics of human life and society, such as sickness, old age, death and war. In the ancient Greek world this made it harder to put old age and death into a corner and forget about it, which <a href="https://www.timescolonist.com/opinion/columnists/column-discomfort-with-death-and-grief-is-a-modern-ailment-1.20744186">we tend to do</a>.</p>
<h2>Choosing when</h2>
<p>Achilles, the hero of <a href="http://classics.mit.edu/Homer/iliad.html">Homer’s Iliad</a>, actually has a choice in the timing of his life and death. </p>
<p>He can have a long life without heroic glory, back on the farm, or he can have a short life with undying fame and renown from his fighting at Troy. The fact that he chooses the latter makes him different from ordinary people like us. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/331683/original/file-20200430-42918-1nohnfj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/331683/original/file-20200430-42918-1nohnfj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/331683/original/file-20200430-42918-1nohnfj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=414&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331683/original/file-20200430-42918-1nohnfj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=414&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331683/original/file-20200430-42918-1nohnfj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=414&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331683/original/file-20200430-42918-1nohnfj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=520&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331683/original/file-20200430-42918-1nohnfj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=520&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331683/original/file-20200430-42918-1nohnfj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=520&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Achilles has a choice of when he dies, young or old. Ernst Herter’s 1884 sculpture Dying Achilles, Achilleion Palace, Corfu Island, Greece.</span>
<span class="attribution"><a class="source" href="https://image.shutterstock.com/image-photo/sculpture-achilles-dying-gardens-achilleon-600w-593267657.jpg">Shutterstock/FURMANCHUK LARISA</a></span>
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<p>Achilles’ heroism is fundamentally linked to his own personal choice of an early death. But it also means his desperate mother, the goddess Thetis, will have to mourn him eternally after seeing him for such a short time in life. Such is the pain for the loss of a child in war.</p>
<p>A play by the master Athenian dramatist <a href="https://www.ancient.eu/Euripides/">Euripides</a> is even more focused on young and old death. The play <a href="http://classics.mit.edu/Euripides/alcestis.html">Alcestis</a> was produced in Athens in 438 BC, making it the earliest surviving Euripidean play (about ten years before the <a href="https://www.ncbi.nlm.nih.gov/pubmed/19787658">plague at Athens</a>).</p>
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Read more:
<a href="https://theconversation.com/thucydides-and-the-plague-of-athens-what-it-can-teach-us-now-133155">Thucydides and the plague of Athens - what it can teach us now</a>
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<p>In the play, the king of Thessaly – an appallingly self-interested person called Admetus – has previously done the god Apollo a favour, and so Apollo does Admetus a favour in return. He arranges for him to extend his life and avoid death in the short term, if he can find someone to take his place and die in his stead.</p>
<p>Admetus immediately asks his father or mother to die for him, based on the assumption that they are old and will presumably die soon anyway. But the father, Pheres, and his wife turn down Admetus, and so he has to prevail on his own wife, Alcestis, to die for him, which she agrees to do. </p>
<p>The story of the play is based around the day of her death and descent to the Underworld, with some rather comic twists and turns along the way. Death (Greek Thanatos) is a character in the play, and he is delighted to have a young victim, in Alcestis, rather than an old one. “They who die young yield me a greater prize,” he says. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/331680/original/file-20200430-42935-1rz8njt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/331680/original/file-20200430-42935-1rz8njt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/331680/original/file-20200430-42935-1rz8njt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331680/original/file-20200430-42935-1rz8njt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331680/original/file-20200430-42935-1rz8njt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331680/original/file-20200430-42935-1rz8njt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331680/original/file-20200430-42935-1rz8njt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331680/original/file-20200430-42935-1rz8njt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">The light catches the Acropolis, Athens.</span>
<span class="attribution"><a class="source" href="https://images.unsplash.com/photo-1522787345986-d5c7885a889e?ixlib=rb-1.2.1&auto=format&fit=crop&w=2700&q=80">Cristina Gottardi/Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
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<h2>The light of day</h2>
<p>There is a particularly spiteful encounter between Admetus and his father on the subject of young and old death:</p>
<p>Admetus: </p>
<blockquote>
<p>Yet it would have been a beautiful deed for you to die for your son, and short indeed was the time left for you to live. My wife and I would have lived out our lives, and I should not now be here alone lamenting my misery.</p>
</blockquote>
<p>Father: </p>
<blockquote>
<p>I indeed begot you, and bred you up to be lord of this land, but I am not bound to die for you. It is not a law of our ancestors or of Hellas that fathers should die for their children! … You love to look upon the light of day – do you think your father hates it? I tell myself that we are a long time underground and that life is short, but sweet.</p>
</blockquote>
<p>The Alcestis of Euripides, and other Greek myths, remind us, should we ever forget, that love of looking upon the light of day is a characteristic of human existence, both for the young and the very old.</p><img src="https://counter.theconversation.com/content/137496/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Chris Mackie does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
Perceptions about coronavirus “only killing old people” highlight the ageist way we sometimes refer to death and dying. Greek myth shows this isn’t new and ancient plays laid out the distinction.
Chris Mackie, Professor of Classics, La Trobe University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/86199
2017-11-01T18:41:22Z
2017-11-01T18:41:22Z
What ancient cultures teach us about grief, mourning and continuity of life
<figure><img src="https://images.theconversation.com/files/192842/original/file-20171101-19894-tr4qsg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Day of the dead at a Mexican cemetery. </span> <span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File%3ADay_of_the_dead_at_mexican_cemetery_4.jpg">© Tomas Castelazo, www.tomascastelazo.com / Wikimedia Commons, via Wikimedia Commons</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p>At this time of the year, <a href="https://www.rutgersuniversitypress.org/day-%20%20of%20%20-the-dead-%20%20in%20%20-the-usa/9780813548579">Mexican and Mexican-American communities</a> observe <a href="https://cup.columbia.edu/book/days-%20%20of%20%20-death-days-%20%20of%20%20-life/9780231136891">“Día de los Muertos” (the Day of the Dead)</a>, a three-day celebration that welcomes the dead temporarily back into families. </p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/192850/original/file-20171101-19850-1a2eow3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/192850/original/file-20171101-19850-1a2eow3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=627&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192850/original/file-20171101-19850-1a2eow3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=627&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192850/original/file-20171101-19850-1a2eow3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=627&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192850/original/file-20171101-19850-1a2eow3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=787&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192850/original/file-20171101-19850-1a2eow3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=787&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192850/original/file-20171101-19850-1a2eow3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=787&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Altar to the dead in Yucatán, Mexico.</span>
<span class="attribution"><span class="source">Daniel Wojcik</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Festivities begin on the evening of Oct. 31 and culminate on Nov. 2. Spirits of the departed are believed to be able to reenter the world of the living for a few brief moments during these days. Altars are created in homes, where photographs and other personal items evocative of the dead are placed. Offerings to the deceased include flowers, incense, images of saints, crucifixes and favorite foods. Family members gather in cemeteries to dine not just among the dead but with them. Similar traditions exist in different cultures with different origins.</p>
<p>As scholars of <a href="https://nyupress.org/books/9780814793480/">death</a> and <a href="http://folklore.uoregon.edu/files/2013/08/Wojcik-Pres-Rock.pdf">mourning rituals</a>, we believe that Día de los Muertos traditions are most likely connected to feasts observed by the ancient Aztecs. Today, they honor the memory of the dead and celebrate the continuity of generations through loving reunion with those who came before. </p>
<p>As Western societies, particularly the United States, move away <a href="https://www.laphamsquarterly.org/death/fond-farewells">from the direct experience of a mourner</a>, the rites and customs of other cultures offer valuable lessons.</p>
<h2>Loss of rituals</h2>
<p>Funerals were handled in the home well into the 20th century in the U.S. and throughout Europe. Sometimes, stylized and elaborate public <a href="http://www.deathreference.com/A-Bi/Ars-Moriendi.html">deathbed rituals</a> were organized by the dying person in advance of the death event itself. As French historian <a href="https://www.penguinrandomhouse.com/books/4744/the-hour-of-our-death-by-philipe-aries-translated-from-the-french-by-helen-weaver/9780394751566/">Philippe Ariès</a> writes, throughout much of the Western world, such death rituals declined during the 18th and 19th centuries. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192847/original/file-20171101-19883-1c007wt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192847/original/file-20171101-19883-1c007wt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=404&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192847/original/file-20171101-19883-1c007wt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=404&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192847/original/file-20171101-19883-1c007wt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=404&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192847/original/file-20171101-19883-1c007wt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=507&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192847/original/file-20171101-19883-1c007wt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=507&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192847/original/file-20171101-19883-1c007wt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=507&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The modern funeral industry.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/success?src=AsyxxvFFRQzph6vjBqJznw-2-68">Coffin image via www.shutterstock.com</a></span>
</figcaption>
</figure>
<p>What emerged instead was a greater fear of death and the dead body. Medical advances extended control over death as the <a href="https://theconversation.com/how-lincolns-embrace-of-embalming-birthed-the-american-funeral-industry-86196">funeral industry took over</a> management of the dead. Increasingly, death became hidden from public view. No longer familiar, death became threatening and horrific. </p>
<p>Today, as various <a href="https://jhupbooks.press.jhu.edu/content/western-attitudes-toward-death">scholars</a> and <a href="http://books.wwnorton.com/books/book-template.aspx?aid=4294981525&cid=15147&lastpage=4&currentpage=1">morticians</a> have observed, many in American culture lack the explicit mourning rituals that help people deal with loss.</p>
<h2>Traditions in ancient cultures</h2>
<p>In contrast, the mourning traditions of earlier cultures prescribed precise patterns of behavior that facilitated the public expression of grief and provided support for the bereaved. In addition, they emphasized continued maintenance of personal bonds with the dead.</p>
<p><a href="https://jhupbooks.press.jhu.edu/content/western-attitudes-toward-death">As Ariès explains</a>, during the Middle Ages in Europe, the death event was a public ritual. It involved specific preparations, the presence of family, friends and neighbors, as well as music, food, drinks and games. The social aspect of these customs kept death public and “tame” through the enactment of familiar ceremonies that comforted mourners.</p>
<p>Grief was expressed in an open and unrestrained way that was cathartic and communally shared, very much in contrast with the modern emphasis on controlling one’s emotions and keeping grief private. </p>
<p>In various cultures the outpouring of emotion was not only required but <a href="http://www.cambridge.org/us/academic/subjects/anthropology/social-and-cultural-anthropology/celebrations-death-anthropology-mortuary-ritual-2nd-edition?format=PB&isbn=9780521423755">performed ceremonially</a>, in the form of ritualized weeping accompanied by wailing and shrieking. For example, traditions of the “death wail,” which allowed people to cry their grief aloud, have been documented among the ancient Celts. They exist today among various indigenous peoples of Africa, South America, Asia and <a href="http://sounds.bl.uk/World-and-traditional-music/Ethnographic-wax-cylinders/025M-C0080X1104XX-0100V0#_">Australia</a>. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/RMdt3rAfmgo?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Song for the dead sung by two women from the Manobo-Dulangan tribe in Mindanao, Philippines.</span></figcaption>
</figure>
<p>In a similar way, the traditional Irish and Scottish practices of “<a href="http://www.bbc.co.uk/programmes/p04wvgpc">keening</a>,” or loudly wailing for the dead, were vocal expressions of mourning. These emotional forms of sorrow were a powerful way to give voice to the impact of individual loss on the wider community. Mourning was shared and public.</p>
<p>In fact, since antiquity and throughout parts of Europe until recently, professional female mourners were often hired to perform highly emotive <a href="https://www.routledge.com/Dangerous-Voices-Womens-Laments-and-Greek-Literature/Holst-Warhaft/p/book/9780415121651">laments at funerals</a>. </p>
<p>Such customs functioned within a larger mourning tradition to separate the deceased from the world of the living and symbolize the transition to the afterlife. </p>
<h2>Rituals of celebration</h2>
<p>Mourning rituals also celebrated the dead through carnival-like revelry. Among the ancient <a href="http://www.cornellpress.cornell.edu/book/?GCOI=80140100254050">Greeks</a> and <a href="https://yalebooks.yale.edu/book/9780300217278/death-ancient-rome">Romans</a>, for example, the deceased were honored with lavish feasts and funeral games. </p>
<p>Such practices continue today in many cultures. In Ethiopia, members of the Dorze ethnic community sing and dance before, during and after funerary rites in communal ceremonies meant to defeat death and avenge the deceased. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/YOpDr8yQC4w?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
</figure>
<p>In not too distant Tanzania, the burial traditions of the Nyakyusa people initially focus on wailing but then include feasts. They also require that participants <a href="http://dx.doi.org/10.1080/02561751.1939.9676088">dance and flirt at the funeral</a>, confronting death with an affirmation of life.</p>
<p>Similar assertions of life in the midst of death are expressed in the example of the traditional Irish “<a href="https://www.irishcentral.com/roots/the-truth-about-the-irish-wake-lewd-songs-pranks-were-part-of-the-tradition-174087771-237533321">merry wake</a>,” a mixture of <a href="http://www.rte.ie/radio1/doconone/2011/0715/646810-radio-documentary-house-strictly-private-irish-wake/">mourning and celebration</a> that honors the deceased. The African-American <a href="http://www.neworleansonline.com/neworleans/multicultural/multiculturaltraditions/jazzfuneral.html">“jazz funeral”</a> processions in New Orleans also combine sadness and festivity, as the solemn parade for the deceased transforms into dance, music and a party-like atmosphere.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/EG6KH905cGU?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
</figure>
<p>These lively funerals are expressions of sorrow and laughter, communal catharsis and commemoration that honor the life of the departed. </p>
<h2>A way to deal with grief</h2>
<p>Grief and celebration seem like strange bedfellows at first glance, but both are emotions that overflow. The ritual practices that surround death and mourning as <a href="http://www.press.uchicago.edu/ucp/books/book/chicago/R/bo3637677.html">rites of passage</a> help individuals and their communities make sense of loss through a renewed focus on continuity. </p>
<p>By doing things in a culturally defined way – by performing the same acts as ancestors have done – ritual participants engage in venerated traditions to connect with something enduring and eternal. Rituals make boundaries between life and death, the <a href="http://www.hmhco.com/shop/books/The-Sacred-and-the-Profane/9780156792011">sacred and the profane</a>, memory and experience, <a href="https://www.routledge.com/The-Ritual-Process-Structure-and-Anti-Structure/Turner-Abrahams-Harris/p/book/9780202011905">permeable</a>. The dead seem less far away and less forgotten. Death itself becomes more natural and familiar.</p>
<p>Funerary festivities such as Day of the Dead create space for this type of contemplation. As we reminisce over our own losses, that is something we could consider.</p><img src="https://counter.theconversation.com/content/86199/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
Many in the Western world lack the explicit mourning rituals that help people deal with loss. On Day of the Dead, two scholars describe ancient mourning practices.
Daniel Wojcik, Professor, English and Folklore Studies, University of Oregon
Robert Dobler, Lecturer of Folklore, Indiana University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/85959
2017-10-31T02:16:34Z
2017-10-31T02:16:34Z
What Chinese philosophers can teach us about dealing with our own grief
<figure><img src="https://images.theconversation.com/files/192499/original/file-20171030-18704-iwed0k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Confucius sculpture, Nanjing, China.</span> <span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File%3AConfucius_Sculpture%2C_Nanjing.jpg">Kevinsmithnyc, via Wikimedia Commons</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p>November 2 is All Souls’ Day, when many Christians honor the dead. As much as we all know about the inevitability of death, we are often unable to deal with the loss of a loved one.</p>
<p>Our modern-day worldview could also make us believe that loss is something we should be <a href="https://opinionator.blogs.nytimes.com/2015/01/10/getting-grief-right/">able to quickly get over</a>, to move on with our lives. Many of us see grieving as a kind of impediment to our ability to work, live and thrive. </p>
<p>As a <a href="https://www.bloomsbury.com/us/understanding-asian-philosophy-9781780937700/">scholar of Chinese philosophy</a>, I spend much of my time reading, translating and interpreting early Chinese texts. It is clear that dealing with loss was a major concern for early Chinese philosophers. </p>
<p>So, what can we learn from them today?</p>
<h2>Eliminating grief</h2>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/192500/original/file-20171030-18730-11h769f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/192500/original/file-20171030-18730-11h769f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=463&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192500/original/file-20171030-18730-11h769f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=463&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192500/original/file-20171030-18730-11h769f.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=463&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192500/original/file-20171030-18730-11h769f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=581&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192500/original/file-20171030-18730-11h769f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=581&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192500/original/file-20171030-18730-11h769f.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=581&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Zhuangzi butterfly dream.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File%3AZhuangzi-Butterfly-Dream.jpg">Ike no Taiga (Japan, 1723-1776), via Wikimedia Commons</a></span>
</figcaption>
</figure>
<p>Two influential philosophers who reflected on these issues were Zhuang Zhou and Confucius. Zhuang Zhou lived in the fourth century B.C. and is traditionally credited with writing one of the most important texts of the Daoist philosophy, <a href="https://terebess.hu/english/chuangtzu.html">“Zhuangzi.”</a> Confucius, who lived more than a century before Zhuang Zhou, had his teachings compiled in a text written by later students, commonly known in the West as the <a href="http://www.indiana.edu/%7Ep374/Analects_of_Confucius_(Eno-2015).pdf">“Analects of Confucius.”</a> </p>
<p>On the face of it, these two philosophers offer very different responses to the “problem” of death. </p>
<p>Zhuang Zhou offers us a way to eliminate grief, seemingly consistent with the desire to quickly get beyond loss. In one <a href="http://ctext.org/zhuangzi/perfect-enjoyment#n2831">story</a>, Zhuang Zhou’s friend Hui Shi meets him just after Zhuang Zhou’s wife of many years has died. He finds Zhuang Zhou singing joyously and beating on a drum. Hui Shi upbraids him and says:</p>
<blockquote>
<p>“This person lived with you for many years, and grew old and died. To fail to shed tears is bad enough, but to also beat on drums and sing – is this not inappropriate?”</p>
</blockquote>
<p>Zhuang Zhou replies that when his wife first died, he was as upset as anyone would be following such a loss. But then he reflected on the circumstances of her origins – how she came to be through changes in the elements that make up the cosmos. He was able to shift his vision from seeing things from the narrowly human perspective to seeing them from the larger perspective of the world itself. He realized that her death was just another of the changes of the myriad things constantly taking place in the world. Just as the seasons progress, human life generates and decays. </p>
<p>In reflecting on life in this way, Zhuang Zhou’s grief disappeared. </p>
<h2>Why we need grief</h2>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/192501/original/file-20171030-18720-wgnffr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/192501/original/file-20171030-18720-wgnffr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=458&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192501/original/file-20171030-18720-wgnffr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=458&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192501/original/file-20171030-18720-wgnffr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=458&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192501/original/file-20171030-18720-wgnffr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=576&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192501/original/file-20171030-18720-wgnffr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=576&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192501/original/file-20171030-18720-wgnffr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=576&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Analects.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File%3ARongo_Analects_02.jpg">Confucius and his disciples, via Wikimedia Commons</a></span>
</figcaption>
</figure>
<p><a href="https://muse.jhu.edu/article/168406/summary">For Confucius,</a> though, the pain of grief was a natural and necessary part of human life. It demonstrates commitment to those for whom we grieve.</p>
<p>Confucius suggests <a href="http://ctext.org/liji/tan-gong-i#n9599">a three-year</a> mourning period following the death of one’s parent. In a <a href="http://ctext.org/analects/yang-huo#n1557">passage from the Analects</a>, one of Confucius’s students, Zaiwo, asks him if it is possible to shorten this mourning period, which seems excessively long. </p>
<p>Confucius responds that a person who honestly cared about his parent would simply be unable to bring himself to mourn in any less serious way. For such a person, the usual joys of life just had no attraction for three years. If, like Zaiwo, someone considers shortening this period, it reveals for Confucius <a href="http://ctext.org/analects/yang-huo#n1557">a lack of sufficient concern</a>. Early Confucians, thus, followed this practice of a three-year mourning period.</p>
<h2>Remembering our ancestors</h2>
<p>There is more to the Confucian response to death than grief. Our encounter with others inevitably changes us. Those closest to us, <a href="https://muse.jhu.edu/article/488827">according to the early Confucians</a>, particularly family members, play the greatest role in determining who we are. In that sense, we are representatives of particular communities than detached and autonomous individuals. </p>
<p>After all, many of our physical features and personalities originate from our ancestors. In addition, we learn many of our attitudes, preferences and characteristic ways of acting from our families, friends and neighbors – the creators of our culture. So, when we consider the question of what we are as individuals, the <a href="https://www.cambridge.org/core/books/confucian-ethics/tradition-and-community-in-the-formation-of-character-and-self/CCF1EE2580B305B5C4E8D413786DA44C">answer necessarily encompasses</a> members of our closest community.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192502/original/file-20171030-18730-18v2z9s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192502/original/file-20171030-18730-18v2z9s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=383&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192502/original/file-20171030-18730-18v2z9s.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=383&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192502/original/file-20171030-18730-18v2z9s.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=383&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192502/original/file-20171030-18730-18v2z9s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=482&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192502/original/file-20171030-18730-18v2z9s.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=482&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192502/original/file-20171030-18730-18v2z9s.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=482&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A Chinese funeral.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File%3AShanghai._A_Chinese_funeral_(NYPL_Hades-2359270-4043626).jpg">Scan by NYPL, via Wikimedia Commons</a></span>
</figcaption>
</figure>
<p>According to the early Confucians, this acknowledgment suggested how to deal with the death of those close to us. To grieve was to honor your parent or another person who died and to commit to <a href="http://ctext.org/analects/li-ren#n1188">following their way of life </a>. </p>
<p>Even if their way of life involved flaws, Confucius notes that individuals were still duty-bound to follow their way while doing their best to <a href="http://ctext.org/analects/li-ren#n1186">eliminate the flaws</a>. In Analects 4.18, <a href="http://ctext.org/analects/li-ren#n1186">Confucius says</a>:</p>
<blockquote>
<p>“In serving your parents, you may lightly remonstrate [if your parents stray from the virtuous way]. But even if your parents are intent on not following your advice, you should still remain respectful and not turn away from them.” </p>
</blockquote>
<h2>Developing an understanding of grief</h2>
<p>So how do the seemingly contrasting Daoist and Confucian approaches to grief apply to us today? </p>
<p>From my perspective, both views are helpful. Zhuangzi does not eliminate grief, but offers a way out of it. The Daoist response could help people find peace of mind by cultivating the ability to see the death of loved ones from a broader perspective.</p>
<p>The Confucian response could challenge assumptions that devalue grief. It offers us a way to find meaning in our grief. It reveals our communal influences, tests our commitments and focuses us on the ways in which we represent and carry on those who influenced us and came before us. </p>
<p>Ultimately, both philosophers help us understand that enduring grief is a necessary part of the process of becoming a fully thriving person. It is not something we should look to eliminate, but rather something we should appreciate or even be thankful for.</p><img src="https://counter.theconversation.com/content/85959/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alexus McLeod does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
The pain of grief is part of human existence. Daoist and Confucian philosophy can help find meaning in grief.
Alexus McLeod, Associate Professor of Philosophy and Asian/Asian American Studies, University of Connecticut
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/85881
2017-10-30T01:53:11Z
2017-10-30T01:53:11Z
How the dead danced with the living in medieval society
<figure><img src="https://images.theconversation.com/files/192267/original/file-20171027-13327-i15iaw.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Detail of figures from the Dance Macabre, Meslay-le-Grenet, from late 15th-century France. </span> <span class="attribution"><span class="source">Ashby Kinch</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p>In the <a href="https://theconversation.com/little-known-facts-about-how-halloween-came-to-be-85720">Halloween season</a>, American culture briefly participates in an ancient tradition of making the world of the dead visible to the living: Children dress as skeletons, teens go to horror movies and adults play the part of ghosts in haunted houses. </p>
<p>But what if the dead played a more active, more participatory role in our daily lives? </p>
<p>It might appear to be a strange question, but as a <a href="http://www.brill.com/imago-mortis">scholar of late medieval literature and art</a>, I have found compelling evidence from our past that shows how the dead were well-integrated into people’s sense of community. </p>
<h2>Ancient practices</h2>
<p>In the medieval period, the dead were considered simply <a href="http://www.brill.com/product/out-of-print/pursuit-holiness-late-medieval-and-renaissance-religion">another age group</a>. The blessed dead who were consecrated as saints <a href="http://www.cornellpress.cornell.edu/book/?GCOI=80140100748630">became part of daily ritual life</a> and were expected to intervene to support the community. </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/192261/original/file-20171027-13311-ucakac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/192261/original/file-20171027-13311-ucakac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=824&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192261/original/file-20171027-13311-ucakac.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=824&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192261/original/file-20171027-13311-ucakac.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=824&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192261/original/file-20171027-13311-ucakac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1036&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192261/original/file-20171027-13311-ucakac.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1036&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192261/original/file-20171027-13311-ucakac.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1036&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A funeral mass, with mourners, from a Book of Hours.</span>
<span class="attribution"><a class="source" href="https://www.bl.uk/catalogues/illuminatedmanuscripts/ILLUMIN.ASP?Size=mid&IllID=58982">The British Library</a></span>
</figcaption>
</figure>
<p>Families offered commemorative prayers to their ancestors, whose names were written in <a href="https://books.google.com/books/about/Time_Sanctified.html?id=iK4TAQAAIAAJ">“Books of Hours,”</a> prayer books that guided daily devotion at home. These books included a prayer cycle known as the “Office of the Dead,” which family members could perform to limit the suffering of loved ones after death. </p>
<p>Medieval culture also had its <a href="http://press.uchicago.edu/ucp/books/book/chicago/G/bo3619514.html">ghosts</a>, which were closely linked with the theological debate concerning purgatory, the space between heaven and hell, where the dead suffered but could be relieved by the prayers of the living. Folk traditions of the dead visiting the living as ghosts were thus explained as <a href="https://books.google.com/books/about/The_Birth_of_Purgatory.html?id=4dzynjFfX7kC">souls pleading</a> for the prayerful devotion of the living. </p>
<h2>When, how practices changed</h2>
<p>The Reformation in Europe <a href="https://yalebooks.yale.edu/book/9780300108286/stripping-altars">radically changed</a> this cultural interface with the dead. In particular, the idea of a purgatory was rejected by Protestant theologians. </p>
<p>While ghosts persisted in folk stories and literature, the dead were pushed from the center of religious life. In England, these changes were intensified in the period after <a href="https://www.google.com/search?q=eamon+duffy+stripping+of+the+altars&ie=utf-8&oe=utf-8">Henry VIII broke with the Catholic Church</a> in the 1530s. Thereafter, the veneration of saints and commemorative prayers associated with purgatory were banned. </p>
<p>The dead were also removed from view in more literal ways: Reformation iconoclasts, who wished to purge churches of any association with Catholic practices, “whitewashed” hundreds of church interiors to cover the bold, colorful murals that decorated the medieval parish churches. </p>
<p>One of the more popular mural subjects that I have studied for many years was the <a href="http://www.brepols.net/Pages/ShowProduct.aspx?prod_id=IS-9782503530635-1">Dance of Death</a>: over 100 mural paintings of the theme, as well as dozens of manuscript illuminations, have been identified in England, Estonia, France, Germany, Italy, Spain and Switzerland. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192291/original/file-20171027-13378-u5naw9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192291/original/file-20171027-13378-u5naw9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=138&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192291/original/file-20171027-13378-u5naw9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=138&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192291/original/file-20171027-13378-u5naw9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=138&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192291/original/file-20171027-13378-u5naw9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=174&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192291/original/file-20171027-13378-u5naw9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=174&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192291/original/file-20171027-13378-u5naw9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=174&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Bernt Notke, Danse Macabre, Tallinn, Estonia (late 15th century).</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File%3ABernt_Notke_Danse_Macabre.jpg">Bernt Notke, via Wikimedia Commons</a></span>
</figcaption>
</figure>
<h2>A powerful metaphor</h2>
<p>Dance of Death murals typically depicted decaying corpses dancing amid representative figures of late medieval society, ranked highest to lowest: a pope, an emperor, a bishop, a king, a cardinal, a knight and down to a beggar, all ambling diffidently toward their mortal end while the corpses frolic with lithe movements and gestures. </p>
<p>The visual alternation between dead and living created a rhythm of animation and stillness, of white and color, of life and death, evocative of fundamental human culture, <a href="http://press.uchicago.edu/ucp/books/book/chicago/D/bo3617929.html">founded on this interplay between the living and the dead</a>. </p>
<p>When modern viewers see images like the Dance of Death, they <a href="http://www.dodedans.com/Epest.htm">might associate them</a> with certain well-known but frequently misunderstood cataclysms of the European Middle Ages, like the terrible plague that swept through England and came to be known as <a href="http://www.bbc.co.uk/history/british/middle_ages/black_01.shtml">Black Death</a>. </p>
<p>My research on these images, however, reveals a more subtle and nuanced attitude toward death, beginning with the evident beauty of the murals themselves, which <a href="http://www.brill.com/imago-mortis">endow the theme with color and vitality</a>. </p>
<p>The image of group dance powerfully evokes the grace and fluidity of a community’s cohesion, symbolized by the linking of hands and bodies in a chain that crosses the barrier between life and death. Dance was a powerful metaphor in medieval culture. The Dance of Death may be responding to medieval folk practices, when people came at night to <a href="https://books.google.com/books?id=_fV8xR5n4K8C&q=55#v=snippet&q=55&f=false">dance in churchyards</a>, and perhaps to the “dancing mania” recorded in the <a href="http://history-world.org/Dancing%20In%20The%20Middle%20Ages.htm">late 14th century</a>, when people danced furiously until they fell to the ground. But images of dance also provoked a viewer to participate in a <a href="https://www.academia.edu/2105555/The_danse_macabre_and_the_medieval_community_of_death">“virtual” experience</a> of a community. It <a href="https://www.academia.edu/9523393/_Danse_macabre_and_the_Virtual_Churchyard">depicted</a> a society collectively facing up to human mortality. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192290/original/file-20171027-13311-zczjjg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192290/original/file-20171027-13311-zczjjg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192290/original/file-20171027-13311-zczjjg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192290/original/file-20171027-13311-zczjjg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192290/original/file-20171027-13311-zczjjg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192290/original/file-20171027-13311-zczjjg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192290/original/file-20171027-13311-zczjjg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Mural of the Danse Macabre from the parish church of Kermaria-en-Isquit, France (late 15th century).</span>
<span class="attribution"><a class="source" href="https://upload.wikimedia.org/wikipedia/commons/6/66/KERMARIA-AN-ISQUIT_danse_macabre_5.jpg">Fil22plm, via Wikimedia Commons</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<h2>A healthy community</h2>
<p>In analyzing the murals in their broader social context, I found that for medieval cultures, dying was a “transition,” not a rupture, that moved people from the community of the living to the dead in stages. </p>
<p>It was part of a larger spiritual drama that <a href="https://www.penguinrandomhouse.com/books/4744/the-hour-of-our-death-by-philipe-aries-translated-from-the-french-by-helen-weaver/9780394751566/">encompassed the family and the broader community</a>.
During the dying process, people gathered in groups to aid in a successful transition by offering supportive prayer. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192270/original/file-20171027-13298-eac5o1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192270/original/file-20171027-13298-eac5o1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=445&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192270/original/file-20171027-13298-eac5o1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=445&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192270/original/file-20171027-13298-eac5o1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=445&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192270/original/file-20171027-13298-eac5o1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=559&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192270/original/file-20171027-13298-eac5o1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=559&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192270/original/file-20171027-13298-eac5o1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=559&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Scenes of dying, a funeral mass, sewing the shroud, burial and comfort of the widow. In the lower margin, a group of nobles confronts a symbolic figure of death, riding a unicorn.</span>
<span class="attribution"><a class="source" href="https://www.bl.uk/catalogues/illuminatedmanuscripts/ILLUMIN.ASP?Size=mid&IllID=10968">The British Library</a></span>
</figcaption>
</figure>
<p>After death, groups prepared the corpse, sewed its shroud and transported the body to a church and then to a cemetery, where the broader community would participate in the rituals. These activities required a high degree of social cohesion to function properly. They were the metaphorical equivalent of dancing with the dead. </p>
<p>The Dance of Death murals thus depicted not a morbid or sick culture but a healthy community collectively facing their common destiny, even as they faced the challenge to renew by replacing the dead with the living. </p>
<p>Many of the murals are irretrievably lost. However, modern restoration work has <a href="https://boydellandbrewer.com/medieval-wall-paintings-in-english-and-welsh-churches.html">managed to recover some of them</a>. Perhaps this conservation work can serve as inspiration to recover an older model of death, dying and grief. </p>
<h2>Acknowledging the work of the dead</h2>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/192273/original/file-20171027-13378-bwn8hm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/192273/original/file-20171027-13378-bwn8hm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=949&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192273/original/file-20171027-13378-bwn8hm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=949&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192273/original/file-20171027-13378-bwn8hm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=949&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192273/original/file-20171027-13378-bwn8hm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1193&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192273/original/file-20171027-13378-bwn8hm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1193&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192273/original/file-20171027-13378-bwn8hm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1193&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Constable, bishop, squire and clerk from the Danse Macabre of the Abbey Church of La Chaise-Dieu, France.</span>
<span class="attribution"><span class="source">Ashby Kinch</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>In the modern era entire industries have emerged to whisk the dead from view and alter them to look more like the living. Once buried or cremated, the dead play a <a href="http://scalar.usc.edu/works/the-nature-of-death-in-the-united-states/contemporary-mainstream-american-deathways">much smaller role</a> in our social lives. </p>
<p>Could bringing the dead back into a central role in the community offer a healthier perspective on death for contemporary Western cultures? </p>
<p>That process might begin with acknowledging the dead as an ongoing part of our image of community, which is built on the work of the dead who have come before us.</p><img src="https://counter.theconversation.com/content/85881/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ashby Kinch does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
For medieval cultures, the dying process and death itself was a ‘transition,’ not a rupture.
Ashby Kinch, Professor of English, University of Montana
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/51749
2015-12-21T05:13:10Z
2015-12-21T05:13:10Z
Santa, death and the Easter Bunny – how to have that hard talk with your kid
<figure><img src="https://images.theconversation.com/files/104241/original/image-20151203-5306-384vaz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Having tough conversations with kids is important. How you do it is even more crucial.</span> <span class="attribution"><a class="source" href="https://flic.kr/p/4VoDiW">Shonna1968/flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p>There’s no way around it: children sometimes have to hear it like it is. Despite our desire to keep their early years carefree, we may not be <a href="https://www.psychologytoday.com/blog/the-fallible-mind/201403/shielding-children-hard-truths-hurts-rather-helps">doing them a favour</a> by keeping some hard truths from them. And for those things that are inescapable, like the death of a family member, <a href="https://crossroadsu.org/university-journal/helping-children-cope-with-death-and-dying/">glib answers</a> won’t do. </p>
<p>We all learn at some stage that the world is not as we’d like it to be. That is possibly the single most important lesson in life. The big question is how to teach it to our kids, and when. </p>
<p>The “when” is sometimes out of our control, as circumstances can dictate. But there are parts of the “how” that can be more manageable. </p>
<h2>Children are not empty vessels</h2>
<p>Kids create deep and powerful narratives about the world regardless of what we do or don’t do. They do this for the same reasons we all do - to explain how the world works and to create meaning. </p>
<p>It is a mistake to think this narrative is absent in them until we decide to help create one. The reluctance we sometimes have to involve ourselves can be a result of this naive view. </p>
<p>We imagine they are somehow neutral or unsullied in their views, and that when we talk to them about hard issues we are forcing them to come to grips with an imperfect world. </p>
<p>We don’t always know what they don’t know. We assume they have developed a lot of cultural norms when they haven’t, and we assume they are unaware of things they have really thought a lot about.</p>
<p>One thing is sure: if we don’t help them make their narratives, they will do it themselves anyway, and perhaps not in ways that are healthy or optimal.</p>
<p>There are two important things we can do as parents to prepare our children for some deep and potentially disturbing conversations, and to help them build a more rational picture of the world. </p>
<p>The first is to help them make sense of the world through frequent and long conversations. Making meaning is the prime function of language, after all. This is where an established behaviour of talking is critical.</p>
<p>The only way to know how they currently see things is to talk with your child - a lot. Talk about issues big and small, and give them the chance to ask things that take time to well up in <a href="http://www.nytimes.com/2015/09/06/opinion/sunday/frank-bruni-the-myth-of-quality-time.html?_r=0">conversation</a>. </p>
<p>The second is to treat them as rational beings capable of making sense of what is going on around them.</p>
<p>Children are far more rational than we give them credit for. And they are far more capable of deep insights than we usually imagine.</p>
<p>I work in the area of teaching children to think. The ability of very young children to do this well is a constant reminder of how our educational system underestimates them.</p>
<h2>Two-way exchanges</h2>
<p>The thing that makes a rational approach possible is treating conversations as two-way exchanges. We don’t just talk to children to instruct them, and we don’t just talk to understand them - we also talk so we can understand each other.</p>
<p>This is a critical point. By talking to understand each other we give children the opportunity to normalise their thinking, and to help understand the norms of mature social thinking. This in turn is important because it provides the ground for a rationality based in <a href="http://www.dan.sperber.fr/wp-content/uploads/2009/10/SperberMercierReasoning.pdf">social competence</a>, in which we reason to solve problems through discourse and social interaction.</p>
<p>As the Russian psychologist Vygotsky <a href="http://www.uky.edu/%7Eeushe2/quotations/vygotsky.html">wrote</a> in <em>Mind and Society</em>, children first learn a competence socially and then internalise it.</p>
<blockquote>
<p>Every function in the child’s cultural development appears twice: first on the social level, and later, on the individual level.</p>
</blockquote>
<p>To put it simply, if you have not modelled how to talk through difficult issues with a child, that child has not learned to internalise a mechanism for dealing with such issues. </p>
<p>This is a key component of teaching resilience - and is there anything we want for our children more than this?. For without the cognitive tools to manage change and uncertainty, they will be <a href="https://theconversation.com/some-useful-tips-on-how-to-raise-an-argumentative-child-43420">less resilient</a> than they could be. </p>
<p>Whether the issue is the crashing reality of Santa’s state of existence, the death of a family member, or a dramatic change in lifestyle, there will be limited recourse for children to rationally understand the situation, and their role in it, if they have not been taught these skills. </p>
<p>So talk to your children about how they reckon Santa does it. Talk about mortality and what it means for us as humans. Talk about what life was like in the past and could be like in the future. Explore and unpack all the implications of these things with them.</p>
<p>Or just talk with them a lot about anything. Give them opportunities to come up with questions about these things themselves. If you give them the chance, they will not disappoint you. And by doing so, you will make them less disappointed.</p><img src="https://counter.theconversation.com/content/51749/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Peter Ellerton does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
How best do we teach our kids that the world is not always as we’d like it to be? The ‘when’ can be out of parents’ control, but there are parts of the ‘how’ that are more manageable.
Peter Ellerton, Lecturer in Critical Thinking, The University of Queensland
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/43619
2015-09-16T03:17:20Z
2015-09-16T03:17:20Z
A real death: what can you expect during a loved one’s final hours?
<figure><img src="https://images.theconversation.com/files/92200/original/image-20150818-5117-1rkytzc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Unfortunately for every "good" death, there are many which are much more stormy and drawn out.</span> <span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-274905212.html&src=download_history">www.shutterstock.com</a></span></figcaption></figure><p>It’s hard to predict events in the final days and hours of a person’s life. Some deaths are wonderful – a gentle decline preceding a gracious demise. Certainly these are the sorts of deaths we see in films or on television, where the dying patient bids farewell to gathered family and friends before softly closing his eyes.</p>
<p>These gentle departures happen in real life too – many people simply die in their sleep, and many families and friends share the privilege of witnessing the calm and serene departure of a loved one. Of course, grief follows, but those left behind are able to take solace in the knowledge and memory of a peaceful passing.</p>
<p>Unfortunately for every “good” death, there are many which are much more stormy and drawn out. These deaths can leave families traumatised for many years or simply make the grief that much harder. </p>
<h2>Out of sight</h2>
<p>Most people in western societies die in hospital or in institutional care. Keeping death out of sight and out of mind in this way means that most people have little real experience of death and dying.</p>
<hr>
<blockquote>
<p>It is difficult to accept death in this society because it is unfamiliar. In spite of the fact that it happens all the time, we never see it. <br> – Elisabeth Kubler-Ross, Death: The Final Stage of Growth, 1975 </p>
</blockquote>
<hr>
<p>The dying process is unpredictable. While dying may occur quickly and unexpectedly, it can take many, many hours or even days. </p>
<p>Some families interpret a long process as a reflection of the strength of their dying relative, and see this time positively, often as an opportunity for reflection. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/92054/original/image-20150817-5127-1rh0j79.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/92054/original/image-20150817-5127-1rh0j79.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/92054/original/image-20150817-5127-1rh0j79.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/92054/original/image-20150817-5127-1rh0j79.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/92054/original/image-20150817-5127-1rh0j79.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/92054/original/image-20150817-5127-1rh0j79.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/92054/original/image-20150817-5127-1rh0j79.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A prolonged bedside vigil can be confronting for families.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/daquellamanera/428870820/">Daniel Lobo/flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc/4.0/">CC BY-NC</a></span>
</figcaption>
</figure>
<p>But many struggle to find any positive meaning in a prolonged, confronting bedside vigil, observing and awaiting an inevitable outcome. For frail elderly family members this can be especially stressful, with other family members worrying about the impact, physical and emotional, on them.</p>
<p>This is particularly the case when the changes accompanying the process are not as gentle and predictable as we would like. The bodily reactions that accompany dying can be quite florid. The majority of patients become unsettled as they approach death.</p>
<h2>Bodily reactions</h2>
<p>As the end nears, it’s not uncommon for the breathing pattern to change, involving repeated cycles of breathing stopping (for what seems like ages) only to start up again. This restarted breathing is often quite rapid and deep. It then slows and stops again, and this cycle repeats over and over. (This sort of breathing is called <a href="http://patient.info/doctor/cheyne-stokes-and-abnormal-patterns-of-respiration">Cheyne-Stokes respiration</a>, named after Dr John Cheyne and Dr William Stokes who described it in the 19th century). </p>
<p>For family this can be difficult for each time the breathing stops it seems death has finally come, but no. Death seems to toy with them.</p>
<p>On top of this, breathing often becomes noisy. This is the so-called “death rattle”. During dying, swallowing becomes impaired and secretions, which would normally be swallowed or would provoke a brisk cough, sit at the back of the throat. With each breath, air bubbles through this fluid, and the resulting guttural noise often causes concern and distress to onlookers. </p>
<p>Medications to dry the secretions may help, and positioning the patient differently may also assist, but rarely do they stop the noise completely. </p>
<p>Warning families of these common changes that they may witness may help prepare them for the time ahead, but some are still disturbed.</p>
<h2>Waiting game</h2>
<p>For some people – both patients and their families – dying is difficult. Irish author Sheridan le Fanu (1814-1873) commented, “Old persons are sometimes as unwilling to die as tired-out children are to say good night and go to bed.” And it can seem this way to exhausted and emotional relatives. </p>
<p>Frequently family members ask if anything can be done to speed up the process – the patient is unconscious anyway, and the outcome will be the same. Others worry that symptom-relieving medication may hasten death.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/92062/original/image-20150817-5095-igdjiv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/92062/original/image-20150817-5095-igdjiv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=427&fit=crop&dpr=1 600w, https://images.theconversation.com/files/92062/original/image-20150817-5095-igdjiv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=427&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/92062/original/image-20150817-5095-igdjiv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=427&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/92062/original/image-20150817-5095-igdjiv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=536&fit=crop&dpr=1 754w, https://images.theconversation.com/files/92062/original/image-20150817-5095-igdjiv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=536&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/92062/original/image-20150817-5095-igdjiv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=536&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Family members might feel like putting their elderly loved ones to bed.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/aramisse/14761112225/">Aramisse/flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>A recent letter I received from a grief stricken lady who sat with her husband for many hours through a long and difficult death, reported how he coughed, choked and wheezed, breathed erratically and gasped sporadically. He kept appearing to have died, only to start breathing again. This poor woman was completely traumatised, sitting through a night and day with her much-loved husband. </p>
<p>“It was a complete nightmare, like something out of a horror movie,” she wrote “… I just wanted the it to end, but it went on interminably. I will never forget it and I so wish it could have been made more dignified.”</p>
<p>The death of a loved one is sad and challenging enough without having to cope with extra trauma that results from a difficult end.</p>
<h2>Minimising distress</h2>
<p>When illness or age present an inescapable conclusion to life, then it is the doctor’s dilemma to ensure a good death. However, the challenge is that this good death must occur within the constraint that medication must not be given to accelerate death, nor to relieve symptoms that are distressing to the family (as treatment is only permitted for the direct benefit of the patient). </p>
<p>Maybe it is time to question the belief that it is wrong to treat a dying patient in order to minimise the distress that their dying may cause their closest relatives. After all, few of us would desire our own deaths to be viewed as “something from a horror movie” and would support actions that might help our family at this difficult time.</p>
<hr>
<blockquote>
<p>Watching a peaceful death of a human being reminds us of a falling star; one of a million lights in a vast sky that flares up for a brief moment only to disappear into the endless night forever. <br> – Elisabeth Kubler-Ross, On Death and Dying, 1969 </p>
<hr>
</blockquote><img src="https://counter.theconversation.com/content/43619/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Charles Corke receives project funding from the Victorian Department of Health.</span></em></p><p class="fine-print"><em><span>Peter Martin. does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
Most people in western societies die in hospital or in institutional care. Keeping death out of sight and out of mind means few people have real experience of death and dying.
Charles Corke, Associate Professor of Medicine, Deakin University
Peter Martin., Palliative Care Physician, Barwon Health
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/35665
2015-01-12T10:35:11Z
2015-01-12T10:35:11Z
Last wishes and clear choices – learning how to talk about end-of-life care
<figure><img src="https://images.theconversation.com/files/67959/original/image-20141222-31570-jpangy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Before patients can state their preferences about dying, they need to talk about them first. </span> <span class="attribution"><a class="source" href="http://www.shutterstock.com/cat.mhtml?lang=en&language=en&ref_site=photo&search_source=search_form&version=llv1&anyorall=all&safesearch=1&use_local_boost=1&searchterm=doctor%20patient&show_color_wheel=1&orient=&commercial_ok=&media_type=images&search_cat=&searchtermx=&photographer_name=&people_gender=&people_age=&people_ethnicity=&people_number=&color=&page=1&inline=126288149">Doctor and patient via michaeljung/Shutterstock</a></span></figcaption></figure><p>Conversations around end-of-life medical care can be challenging. Consider someone I’ll call Mrs. Jones, an elderly patient with advanced heart disease. When her doctor asked her to discuss the kind of care she wanted to receive at the end of her life, Mrs. Jones said that she had devoted a lot of thought to the matter and had clear instructions she wanted her family to follow. </p>
<p>First Mrs. Jones wanted to be buried near her family – above ground – and she wanted her grave to be covered with yellow and white flowers. Second, she wanted to be laid out not in a dress but in her nightgown and robe. And finally, she wanted to be buried with a treasured photograph of her boyfriend, which showed a handsome young man in military uniform. </p>
<p>But her doctor was asking a different question. Specifically, she needed to know how Mrs. Jones wanted the medical team to care for her as she was dying. Mrs. Jones said that she hadn’t thought about end-of-life care, but she would like to learn more about her options. </p>
<p>After discussing the choices, Mrs. Jones expressed some clear preferences. “I know for a fact that I not want to undergo chest compressions, and I don’t want anyone using tubes to breathe for me or feed me.” Her doctor arranged for Mrs. Jones’ daughter to join the conversation. The conversation wasn’t easy – Mrs Jones and her daughter cried as they talked – but afterward they were grateful that they had shared everything so openly. </p>
<p>Shilpee Sinha, MD, Mrs. Jones’ doctor, has these conversations every day. She is the lead physician for palliative care at Methodist Hospital in Indianapolis, where she specializes in the care of dying patients. She also teaches medical students and residents how to provide better care for patients at the end of life. </p>
<p>Sinha is part of a relatively small cadre of such doctors nationwide. It is estimated that only about 4,400 doctors specialize in the care of terminally ill and dying patients. The US is currently facing a shortage of as many as <a href="http://www.ncbi.nlm.nih.gov/pubmed/21145468">18,000</a> of these specialists. There is only one palliative care specialist for <a href="http://www.npr.org/blogs/health/2013/04/03/176121044/as-palliative-care-need-grows-specialists-are-scarce">20,000 older adults</a> living with severe chronic illness.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/68002/original/image-20141223-32207-zoj310.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/68002/original/image-20141223-32207-zoj310.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/68002/original/image-20141223-32207-zoj310.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/68002/original/image-20141223-32207-zoj310.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/68002/original/image-20141223-32207-zoj310.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/68002/original/image-20141223-32207-zoj310.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/68002/original/image-20141223-32207-zoj310.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Doctors can help initiate conversations about end-of-life care.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-210927622/stock-photo-senior-male-doctor-showing-medical-results-to-his-female-woman-patient-with-x-ray-analysis-in.html?src=_VVwusCBrtdpNs_ekm1G-A-2-99">Doctor talking via CristinaMuraca/Shutterstock</a></span>
</figcaption>
</figure>
<p>On average, <a href="http://www.cdc.gov/nchs/fastats/deaths.htm">6,800 Americans die every day</a>. The majority of deaths are anticipated. Consider that about <a href="http://www.nhpco.org/sites/default/files/public/Statistics_Research/2013_Facts_Figures.pdf">1.5 million people</a> enter hospice care each year. This means there is ample opportunity for many patients to talk with their doctors and family members about end-of-life care.</p>
<p>Before patients can explore and express their preferences about dying they first need to have a conversation like the one between Sinha and Mrs. Jones. In too many cases, no such conversation ever takes place. Patients often don’t know what to ask, or they may feel uncomfortable discussing the matter. And doctors may never broach the subject. </p>
<p>At one end of the spectrum, doctors can do everything possible to forestall death, including the use of chest compressions, breathing tubes, and electrical shocks to get the heart beating normally again. Of course, such actions can be traumatic for frail and dying patients. At the opposite end, doctors can focus on keeping the patient comfortable, while allowing death to proceed naturally. </p>
<p>And of course, end-of-life care can involve more than just making patients comfortable. Some patients lose the ability to eat and drink, raising the question of whether to use tubes to provide artificial hydration and feedings. Another issue is how aggressively to promote the patient’s comfort. For example, when patients are in pain or having trouble breathing, doctors can provide medications that ease the distress. </p>
<p>Another issue is ensuring that the patient’s wishes are followed. This does not always happen, as orders can be lost when patients are transferred between facilities such as hospitals and nursing homes. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/68003/original/image-20141223-32216-1rqj1an.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/68003/original/image-20141223-32216-1rqj1an.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/68003/original/image-20141223-32216-1rqj1an.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/68003/original/image-20141223-32216-1rqj1an.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/68003/original/image-20141223-32216-1rqj1an.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/68003/original/image-20141223-32216-1rqj1an.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/68003/original/image-20141223-32216-1rqj1an.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Families should participate in end-of-life care conversations.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-123325801/stock-photo-row-of-multiethnic-people-sitting-side-by-side-while-waiting-for-doctor-in-hospital-lobby.html?src=_VVwusCBrtdpNs_ekm1G-A-2-4">Waiting room Tyler Olson/Shutterstock</a></span>
</figcaption>
</figure>
<p>Fortunately, most states across the country are beginning to make available a new tool that helps doctors and patients avoid such unfortunate outcomes. It is called <a href="http://www.or.polst.org/">POLST</a>, for Physician Orders for Limiting Scope of Treatment. First envisioned in Oregon in the early 1990s, it grew out of a recognition that patient preferences for end-of-life care were too frequently not being honored. Typically, the doctor is the one to introduce POLST into the conversation, but there is no reason patients and family members cannot do so.</p>
<p>The cornerstone of the program is a one-page form known in Indiana as POST. It consists of six sections, including cardiopulmonary resuscitation (CPR); a range of other medical interventions, from admission to the intensive care unit to allowing natural death; antibiotics; artificial nutrition; documentation of the person with whom the doctor discussed the options; and the doctor’s signature. </p>
<p>The POST form helps to initiate and focus conversations between patients, families, and doctors around end-of-life care. It also fosters shared decision making, helping to ensure that all perspectives are taken into account, and ensuring that patient wishes are honored. </p>
<p>POST can be applied across all settings, from the hospital to the nursing home to the patient’s home. It can be scanned into the patient’s electronic medical record, ensuring that it is available to every health professional caring for the patient. And it does not require a notary or an attorney (or the associated fees), because it is a doctor’s order. </p>
<p>Of course, merely filling out the form is not enough. The patient’s wishes can be truly honored only if the patient and family understand the options, have the opportunity to pose questions, and trust that their wishes will be followed. In other words, POST achieves its purpose only if it is based on the kind of open and trusting relationship Dr. Sinha had developed with Mrs. Jones. </p>
<p>Providing such care isn’t easy. “Our health care system pays handsomely for curative care,” Sinha says, “but care at the end of life is probably the most poorly compensated kind that doctors provide. This can make it difficult to get hospitals and future doctors interested in it.” Thanks to initiatives such as POLST and doctors such as Sinha, however, such care is finally getting more of the attention it deserves.</p><img src="https://counter.theconversation.com/content/35665/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Richard Gunderman does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
Conversations around end-of-life medical care can be challenging. Consider someone I’ll call Mrs. Jones, an elderly patient with advanced heart disease. When her doctor asked her to discuss the kind of…
Richard Gunderman, Chancellor's Professor of Medicine, Liberal Arts, and Philanthropy, IUPUI
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/34053
2014-12-05T02:08:25Z
2014-12-05T02:08:25Z
We need to talk about the growing cost of sending off a loved one
<figure><img src="https://images.theconversation.com/files/64775/original/x5kx5yt4-1416271425.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The cost of funerals is rising in Australia as the industry becomes more corporatised.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>What’s the first thing you are told to do when a loved one dies? If they die in a medical or residential care institution, which happens in more than 85% of cases in Australia, a funeral director is your first port of call. </p>
<p>Funeral directors are part of what is called the “death care” industry, a sector becoming increasingly corporatised in Australia. The major corporate player, InvoCare, continues to expand, acquiring death care businesses in Australia, New Zealand and Singapore. It is now the largest operator in the Asia-Pacific region. </p>
<p>InvoCare’s market share in Australia is <a href="http://www.fool.com.au/2014/10/17/does-invocare-limited-deserve-a-place-in-your-portfolio/">reported</a> to be about 30% of the A$1 billion industry, with well over 200 funeral locations, dozens of memorial parks and crematoria and, more recently, expanding investments in coffin manufacturers resulting in a business model of vertical integration.</p>
<p>What does this concentration in the industry mean for Australian society? The cost of funerals and memorialisation is rising and many sections of society are being burdened by the debt created by giving a loved one a good “send off”.</p>
<p>So, how much does a funeral cost? Well, there is no simple answer. It depends a little on where you live and what funeral services you choose, as well as the method of “disposal”. And therein lies the problem. Modern society, with a little help from the death care industry, has conflated the ritual of funerals with the disposal of the body.</p>
<p>Invariably the advice you receive (from the hospital, nursing home etc.) directs you to contact a funeral director to help you at what is a difficult time. They are the body disposal experts. But their business model is largely built around selling the send off as well as disposal. This is when things get tricky and when these decisions need to be made, it is usually when the consumer is vulnerable. </p>
<p>Shopping around is neither an obvious or tasteful option. Disentangling the services of the funeral from body disposal is like elopement. Why, because funeral directors earn the majority of their income from the funeral service, much like a wedding planner’s role in marriage. </p>
<p>Funeral costs have <a href="http://nfda.org/about-funeral-service-/trends-and-statistics.html#fcosts">increased</a> approximately 10 fold over the last 50 years. Additionally, the cost of burial plots in densely populated areas has skyrocketed and the limited tenure of these plots is coming under increased scrutiny. Buying a burial plot is <a href="https://theconversation.com/losing-the-plot-death-is-permanent-but-your-grave-isnt-33459">not forever</a>.</p>
<p><a href="https://www.moneysmart.gov.au/life-events-and-you/over-55s/paying-for-your-funeral">Websites</a> suggest the cost of a funeral (which includes disposing of the body) in 2014 range from about A$4000 to A$14000 depending on the service options chosen. The $4000 option will cover the funeral directors fees (about 60% of the bill), the cremation fee (about 20%), a cheap coffin (about 20%) and various minor regulatory fees (medical certificates and the like). </p>
<p>Adding flowers and newspaper announcements adds hundreds of dollars to the bill, burial plots or mausolea space can run into tens of thousands of dollars and stylish coffins or caskets can be very expensive. Optional body preservation and restoration services such as embalming as well as memorialisation such as a headstone or plaque all increase the cost. Funeral directors also commonly offer catering and other attendant services for a full service funeral. All of these extras, if sourced by the funeral director, also increase the profitability, especially if the services are vertically integrated like the ones InvoCare offers.</p>
<p>Some may ask, so what’s the problem? There is choice. But body disposal is an essential social service and, for many, finding even A$4000 for the lowest cost option provided by a funeral director is impossible. Most do not know there are other choices to arrange a funeral.</p>
<p>The most obvious is a “do-it-yourself” funeral. Taking control is difficult when you are grieving, but if you are are willing to take on some tasks yourself the cost could be closer to A$1000. Transporting the body yourself or with the help of some friends, building your own coffin or receptacle, conducting your own service and opting for cremation for disposal is likely to result in the lowest cost. With permission you may be able bury a body on private land, or you can even opt to dispose of the body at sea which avoids cremation costs. </p>
<p>The problem is not the choices offered by the death care industry, but the lack of understanding by consumers that calling a funeral director is not the only option. </p>
<p>Governments, health care professionals and the industry itself all have an interest in maintaining the status quo. However the current situation of devolving the responsibility for dealing with death to professionals reinforces the mystique associated with death and allows the burgeoning costs associated with funerals and disposing of bodies to become a burden on the living so as to conform to expectations of giving the dead an appropriate “send off”.</p>
<p>Some consumers might find comfort in pre-paying for a funeral via a “pre-need” contract or purchasing funeral bonds or insuring through “final expenses insurance”, however all these options still promote using a funeral director. And while each of these options are regulated in some way, around half the complaints about the industry relate the shortcomings of these arrangements. In particular, bereaved relatives often find the pre-paid funeral provides an inadequate amount to cover expenses at the time of death. Interestingly, InvoCare sees the growing pre-need contract business as a fertile source of future revenue streams. </p>
<p>While there are jurisdictional differences across Australia, both the funeral industry and disposal of dead bodies are regulated in a piecemeal fashion. As an example in NSW, the key regulations relate to funeral directors being required to offer a basic funeral with an itemised account and public health issues surrounding the transport and disposal of bodies. So, in most cases, you could easily DIY at a fraction of the cost.</p>
<p><em>The Conversation is currently running a series on <a href="https://theconversation.com/au/topics/death-and-dying-series">Death and Dying</a>.</em></p><img src="https://counter.theconversation.com/content/34053/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
What’s the first thing you are told to do when a loved one dies? If they die in a medical or residential care institution, which happens in more than 85% of cases in Australia, a funeral director is your…
Sandra van der Laan, Associate Professor of Accounting, University of Sydney
Lee Moerman, Associate Professor, University of Wollongong
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/29604
2014-07-23T12:26:36Z
2014-07-23T12:26:36Z
Way to go: when will you die, how, and with what support?
<figure><img src="https://images.theconversation.com/files/54657/original/j4xd3wjm-1406110002.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Coming to terms.</span> <span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-137790233/stock-photo-senior-patient-at-hospital-with-worried-wife-holding-hands.html?src=yLVhu38JuHQPUtjWNx4f+w-2-52">Dying by Shutterstock</a></span></figcaption></figure><p>Every year around half a million people die in England. The success of medicine over the past decades has led to a sustained rise in the average human life expectancy: a third of children born today will live <a href="http://www.ons.gov.uk/ons/rel/lifetables/historic-and-projected-data-from-the-period-and-cohort-life-tables/2012-based/sty-babies-living-to-100.html">to be 100 years old</a>. However, it does not follow that fewer people are dying. In fact, the annual number of deaths in England has begun to rise and <a href="http://pmj.sagepub.com/content/22/1/33.long">is projected</a> to continue to do so for at least the next 20 years.</p>
<h2>How will you die?</h2>
<p>What will <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC557152/">the trajectory</a> of our final deterioration be like? For around a fifth of us, our deaths will be sudden, and unpredictable – from a large stroke or an accident, for example. A further fifth of us are likely to die from cancer, and will live with relatively good physical function until quite close to death, when there is usually a relatively linear deterioration over weeks. The rest – the majority of us – will live with and die from chronic medical problems such as heart failure, kidney failure and dementia, and our final days, weeks and months will be characterised by relapses and remissions against a background of a slowly progressive deterioration in physical function.</p>
<h2>Palliative care</h2>
<p>Palliative care is a philosophy of care for people who are approaching the ends of their lives, where the goal is to improve the patient’s comfort and quality of life, rather than trying to extend or increase its quantity. The word palliative comes from the Latin <em>palliare</em> meaning “to cloak” and palliative care focuses on finding out what the worst problems for the patient and their family are, and to then improve them.</p>
<p>Part of the focus of palliative care is on relieving physical symptoms, which are common (though not universal) in people who are dying. More than a third of dying people <a href="http://www.sciencedirect.com/science/article/pii/S0885392405005610">will experience pain</a>. Effective treatment depends on identifying the likely cause of it. For many types of pain, opioids such as morphine sulphate are the mainstay of treatment. It is important for patients to realise that taking opioids in the right doses for their pain will not cause them to become addicted, or to die more quickly.</p>
<p>A principle of palliative care is that only medication which has the aim of improving comfort is given to people who are thought to be dying. Drugs with longer-term benefits (such as cholesterol-lowering drugs) are usually stopped. Medicines can be given by mouth, or in other forms such as injections or infusions under the skin if the patient finds swallowing difficult.</p>
<p>While assessment and treatment of physical symptoms is a large part of palliative care, it is also essential to address psychological, social and spiritual needs. Cicely Saunders, who founded the modern palliative care movement in the 1960s, defined <a href="http://www.bmj.com/content/331/7516/576.5">the concept of Total Pain</a>, suffering that encompasses not just physical but also social, psychological and spiritual dimensions. Therefore in order to control pain in the dying it is necessary to explore these dimensions. Questions such as: “How do you make sense of the future?”, “Where do you find your strength?” and: “What is most important to you?” are often useful. </p>
<h2>When do you know it’s the end?</h2>
<p>How do we know when to “switch” to palliative care? How do we know when a person is dying? The last weeks of life for most people are characterised by a progressive physical decline, frailty, lethargy, worsening mobility, reduced oral intake, and little or no response to medical interventions. However, these changes can be subtle. In people with frailty and dementia, the dying phase can be difficult to distinguish because patients can live for a long time with a very poor level of function.</p>
<p>It is therefore important to provide palliative care in parallel with, rather than in series with, other medical care. This will include having sensitive conversations with the patient and their carers about their wishes and preferences for the future, in anticipation of their deterioration. For example, many patients would prefer to die at home rather than in hospital and it is essential to explore such preferences while the patient remains well enough to travel.</p>
<p>These conversations <a href="https://theconversation.com/we-need-to-get-over-our-fear-of-talking-about-dying-14186">can be hard for healthcare professionals</a>, whose training equips them for saving lives, and for whom death is often viewed as failure. Both the doctor and the patient may view talking about death as an admission of defeat. But however uncomfortable these conversations are, the danger of avoiding them is a medicalised death, with more suffering for the patient, and more distress in bereavement for their carers. As Cicely Saunders said: “How we die remains in the memory of those who live on.”</p><img src="https://counter.theconversation.com/content/29604/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Katherine Sleeman does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
Every year around half a million people die in England. The success of medicine over the past decades has led to a sustained rise in the average human life expectancy: a third of children born today will…
Katherine Sleeman, Clinical Lecturer in Palliative Medicine, King's College London
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/26653
2014-05-14T07:39:25Z
2014-05-14T07:39:25Z
Death matters – so why do the British hate talking about it?
<figure><img src="https://images.theconversation.com/files/48391/original/6qmkzp8b-1399992431.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Reality bites.</span> <span class="attribution"><span class="source">Dead label by Shutterstock</span></span></figcaption></figure><p>“I want an untamed, beautiful death. So I think we should have a competition in dying, sort of like Halloween costumes,” wrote <a href="http://www.nytimes.com/1990/10/12/obituaries/anatole-broyard-70-book-critic-and-editor-at-the-times-is-dead.html">Anatole Broyard</a> in his <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1305776/">pathography</a>, Intoxicated by my Illness, written in the 1980s. “Isn’t there some way to turn dying into some kind of celebration,” Broyard wondered. “A birthday to end all birthdays?”</p>
<p>Death, disease and illness, as Broyard knew only too well, are peculiarly febrile topics in Euro-American cultures, too often crushed under the heel of avoidance and deferral. Broyard’s erudite and witty chronicling of his prostate cancer was part of a deeper concern with the art of dying well. If he expected his doctors to be both physician and metaphysician, he also did not lose sight of the importance of more mundane and practical details, including settling “unfinished business” and making a will.</p>
<p>There is a smattering of a Broyardian sensibility to the rationale behind Dying Matters awareness week. “Discussing dying is rarely easy, but unless we have the conversations that matter we’re unlikely to get the right care and support,” says Mayur Lakhani, a practising GP and chair of the <a href="http://www.dyingmatters.org/">Dying Matters Coalition</a> – one of a number of groups that have long been campaigning for greater equality in access to end-of-life care – and the <a href="http://www.ncpc.org.uk/">National Council for Palliative Care</a>. Lakhani’s comments refer to the findings of <a href="http://www.comres.co.uk/poll/1173/ncpc-dying-matters-survey.htm">a new Comres poll</a>. It found a widespread reluctance among the British public to talk about or to plan for death. Only 36% of adults said they had written a will and 83% said they thought the British were uncomfortable talking about dying and death.</p>
<p>If many of us are failing to make adequate plans for our deaths and are not even talking about it, neither are we entirely death averse. While only 21% of people said that they had talked about their death with someone else, 27% said that they had posted an online tribute to someone who has died.</p>
<p>That our digital alter egos are bolder, braver and more <a href="http://dl.acm.org/citation.cfm?id=1385797">idealised versions</a> of our real world selves seems to be a phenomena that is already transforming death and mourning in the UK. The doctor Kate Granger is one of those who has <a href="http://www.telegraph.co.uk/health/10671425/My-legacy-will-be-a-celebration-of-NHS-care.html">been blogging and tweeting</a> about her terminal cancer, in the hope of bringing dying out of the cultural shadows. <a href="https://theconversation.com/you-can-linger-longer-with-a-digital-death-17245">Virtual mourning</a> and memorialisation are also on the rise, with digital death and inheritance becoming new posthumous predicaments (would you want to linger online after you’ve gone?) as well as niche markets.</p>
<p>In addition to charting cultural trends, there are other realities behind the impetus to desensitise death and dying. Encouraging people to talk about their end-of-life choices is thought to be one way of moving towards better end-of-life care, but this is only part of the story. Death plans and choices are also constrained by who you are, where you live and what you are dying from. For example, the ComRes research also found that given the choice, just 6% of the public would choose to die in hospital, with most wanting to die at home. However, the overall proportion of home deaths in England and Wales has been falling in recent years, with even higher rates for those aged over 65, women and people with diseases other than cancer. </p>
<p><a href="http://pmj.sagepub.com/content/22/1/33.abstract">It is estimated</a> that if current trends continue, fewer than one in ten of us in England and Wales will die at home by 2030.</p>
<p>In 2012, the organisation Help the Hospices, <a href="http://www.helpthehospices.org.uk/media-centre/press-releases/urgent-action-needed-to-widen-access-to-palliative-care/">found that</a> those from ethnic minorities, and with diseases other than cancer, could be especially disadvantaged in their access to specialist palliative care services. The organisation estimated that 92,000 people who could benefit from palliative care each year do not receive it. And nestled within the statistics is the debris of what seem to be disturbing trade-offs. <a href="http://pressroom.ackura.com/sueryder/1261-People-accept-painful-death-to-be-with-loved-ones--finds-Sue-Ryder-report.aspx">Research commissioned</a> by the charity Sue Ryder in 2013, showed that people were willing to accept the prospect of a painful death if it meant being with their loved ones at home.</p>
<p>It is also the case that attitudes to pain and pain relief can vary with ethnicity, faith and generation. <a href="http://www.bloomsbury.com/uk/death-and-the-migrant-9781472515339/">In my work</a> with dying migrants to the UK, it is not so unusual to come across those who refuse pain relief because they want to retain some level of consciousness when they are dying or because pain has religious or spiritual meaning. <a href="http://www.ncbi.nlm.nih.gov/pubmed/18541639">Research that has compared</a> experiences of pain among white British and black British Caribbean patients with advanced cancer discovered that faith can have a particular influence on both the meaning and experience of pain for black Caribbean patients. Pain for the latter group could be seen as either a test of faith or a punishment for a wrongdoing. An interesting finding from this study was that pain and imminent death were viewed by some respondents within the context of what had been difficult lives. From this vantage point, their cancer pain was not the most challenging experience they had endured. </p>
<p>The idea that we should have some say over where and how we die <a href="http://www.discoversociety.org/2014/05/06/how-would-you-like-to-die/">is an increasing expectation</a> in western cultures, according to the sociologist, David Clark. But it is one that is unevenly distributed. Alongside a reticence in talking about death that the Dying Matters survey has identified, Clark notes the rise in popularity of new British cultural trends: <a href="http://www.soulmidwives.co.uk/what-is-soul-midwifery/">soul midwives</a> (non-medical death companions) and death cafes <a href="https://theconversation.com/death-isnt-taboo-were-just-not-encouraged-to-talk-about-it-25001">and salons</a>, where people can congregate to talk about any aspect of death, or in the case of salons, ruminate upon various intellectual and artistic morbid endeavours. “Will it be the case that in their dying as in their living, the baby boomers get it all?” Clark asks.</p><img src="https://counter.theconversation.com/content/26653/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Yasmin Gunaratnam does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
“I want an untamed, beautiful death. So I think we should have a competition in dying, sort of like Halloween costumes,” wrote Anatole Broyard in his pathography, Intoxicated by my Illness, written in…
Yasmin Gunaratnam, Senior Lecturer in Sociology, Goldsmiths, University of London
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/25001
2014-04-10T13:11:31Z
2014-04-10T13:11:31Z
Death isn’t taboo, we’re just not encouraged to talk about it
<figure><img src="https://images.theconversation.com/files/45877/original/fmh9t6y2-1396971846.jpg?ixlib=rb-1.1.0&rect=6%2C33%2C1017%2C706&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Way to go: a Ghanaian coffin.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/cbcastro/1393532104/sizes/l">Cbcastro</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc/4.0/">CC BY-NC</a></span></figcaption></figure><p>Contrary to the popular wisdom that it’s a taboo subject, we love discussing death. Dead bodies fascinate us and some of our favourite television shows have been about death and forensic pathology. </p>
<p>But since the mid-to-late 19th century when the Victorians celebrated death and funerals with much theatricality – so the argument goes – we’ve repressed death to the point of it being hidden. Even worse, death has become so distant that it terrifies first-world humans and the best we can do is learn to manage an overpowering sense of dread. </p>
<p>But far from being taboo, socially repressed or terrifying, death is much more personal than it used to be. We hear about and see images of death everyday; we embrace it in what we watch; and it inevitability means we can’t really avoid it. Incest is a taboo. Necrophilia (which really does fascinate people) is a taboo. Death is not a taboo. It is more that we aren’t encouraged to discuss our own individual demise. </p>
<p>The argument about “death dread” does, however, illustrate an issue in the modern first world (which, it must be noted, has the luxury of time to think about these matters): we’ve fallen out of practice when it comes to the “everydayness” of death and dead bodies – something the Victorians, with their off-the-charts infant mortality rates and death from preventable disease, knew much about.</p>
<p>One of the key reasons is vastly improved healthcare and successful public health campaigns. We live a great deal longer than we did even 60 to 70 years ago, and we significantly outlive our 19th-century cousins. Our increasing longevity has given many more humans than ever before the opportunity to begin thinking about not only how a person wants to die but what kind of death it should be. And the tension between society and the individual is best shown by the current debate about assisted dying: the rights of the person to decide how and when to die and the counter argument that this will essentially undermine the moral fabric of society. </p>
<h2>What about when you die?</h2>
<p>For many individuals, death is something to ignore. But for many of us working on topics related to death, dying and dead bodies, the big focus now is engaging with death as an active, open and productive thing. It is remarkable how most people (of all ages) confess to never thinking about this topic. Have you ever talked about what you want done with your body when you die? If not, why?</p>
<p>A person’s choices can change and often do as new kinds of biomedical technology are introduced. I, for example, am an organ, tissue, and bone donor in both the UK and the US (where I’m originally from) but that wasn’t an option until the mid-20th century. Similarly, new forms of dead body disposal technology will continue to appear and this inevitably means people will choose future methods of final disposal that might seem shocking today. Water and potassium hydroxide-based tissue digestion systems, for example, <a href="http://www.livescience.com/15980-death-8-burial-alternatives.html">are already in operation</a> and will only increase in the coming years. </p>
<p>The point, it seems to me, is to helpfully challenge why so many commentators, academics (like myself), and otherwise intelligent people, are so committed to persistently explaining that death is a socially repressed taboo subject. What most people need is a reason or a little bit of encouragement to know that it is not weird or macabre to have these discussions. Part of my current job, it seems, is regularly telling people that it is completely normal to discuss and think about death. And perhaps more openness might also encourage more of us to sign up for organ donation since we understand our dead body is just that, and sharing our organs might not be that strange or intrusive or compromise who we are. </p>
<p>So here is an official death expert recommendation: today, this day, and for the remainder of your days, talk about death with everyone you know and encourage them to do the same. Just remember, and here I am paraphrasing the philosopher Spinoza, discussing death is a meditation not on dying but on living life. </p>
<p><em>John Troyer is speaking at <a href="http://potts-pots.blogspot.co.uk/p/the-death-salon-2014.html">Death Salon UK 2014</a> at Barts Pathology Museum, part of Queen Mary, University of London.</em></p><img src="https://counter.theconversation.com/content/25001/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>John Troyer has received funding from the RCUK and the Arts and Humanities Research Council. He is also the son of an American Funeral Director.</span></em></p>
Contrary to the popular wisdom that it’s a taboo subject, we love discussing death. Dead bodies fascinate us and some of our favourite television shows have been about death and forensic pathology. But…
John Troyer, Deputy Director, Centre for Death and Society , University of Bath
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/14186
2013-05-17T13:19:14Z
2013-05-17T13:19:14Z
We need to get over our fear of talking about dying
<figure><img src="https://images.theconversation.com/files/24072/original/y7z3bg89-1368790556.jpg?ixlib=rb-1.1.0&rect=3%2C6%2C2024%2C1463&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">It's never easy when someone we're close to is dying but there are things we can learn from the professionals who deal with this every day.</span> <span class="attribution"><span class="source">PA/David Cheskin</span></span></figcaption></figure><p>It’s not always easy to talk to someone who is dying. Conversations about future plans and wishes may appear insensitive and fuelled with great pain and distress when it’s somebody we love. </p>
<p>For some, not knowing what to say or being afraid to say the wrong thing, it is easier to avoid the person than engage in conversation where the D-word becomes the elephant in the room. </p>
<p>Many of us have a superficial familiarity with death. We’re used to seeing it in faraway pictures and footage in the news and on the internet or as fiction in films. But the reality for many of us who know someone who’s dying or care for them, it can be incredibly challenging and emotionally labour intensive. </p>
<p>For the dying, though, there is often a lot to say. This might be about <a href="http://www.guardian.co.uk/lifeandstyle/2012/feb/01/top-five-regrets-of-the-dying">putting things to put to rest</a>, making plans about end of life care or how much therapy to have or making funeral arrangements. Most importantly, they might want to be reassured that life will continue for their loved ones when they have died. </p>
<p>Undoubtedly, talking to someone who is dying can be difficult, but it can also be therapeutic. And knowing about your loved one’s wishes is incredibly important as death nears. It can comfort the bereaved knowing they have carried out their wishes during their final hours.</p>
<p>Even for nurses, who care for the dying and the bereaved on a routine basis, it can be one of the most stressful parts of their role - both professionally and personally. </p>
<p>While some find it the most rewarding aspect of nursing, others tend to avoid <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2702.2011.03860.x/abstract">investing in the nurse-patient relationship</a> that should develop with a dying person. Using avoidance as a coping mechanism is dangerous and the research showed these nurses are more at risk of burn out, occupational stress and ill health. </p>
<p>Care of the dying is known as a source of anxiety and occupational stress and if left unmanaged can lead to them leaving their nursing career altogether. More importantly, it also results in <a href="http://www.ncbi.nlm.nih.gov/pubmed/21940086">a poor experience for the patient</a> and their relatives. </p>
<p>In order to meet the goals of the <a href="http://www.cpa.org.uk/cpa/End_of_Life_Care_Strategy.pdf">NHS end of life care strategy</a> and improve the quality of care to those near the end of life, there is a fundamental need to focus efforts in two areas. The first needs to be on raising public awareness about the end of life experience and managing public expectations of advances in medical treatments and the limits of intervening with resuscitation. </p>
<p>The second is support. Nurses are uniquely placed to care for the dying and are influential in how this is co-ordinated in our health system, but we need to support all those who care for the dying - the healthcare professionals and informal carers - who develop close relationships and read intuitive cues.</p>
<p>As death nears, people often become more tired and communication diminishes. Knowing them is fundamental during the last hours of life in order to provide the individual comfort care they need. What do certain hand gestures mean? What is indicative of pain? When is the patient ready to die? This requires a special understanding between the patient and the nurse. Recognising the dying process and the importance of this relationship in somebody’s final hours can help.</p>
<p>In 1000 hours of observation and interviews with people with terminal illnesses, their families and healthcare staff, we found that patients <a href="http://www.ncbi.nlm.nih.gov/pubmed/21131103">equate care to the attention they receive</a>. Nurses do not need to be doing anything medically for them but their presence is what patients and their families view as “quality care”. </p>
<p>“No one actually knows what they should be saying,” one nurse told us. “There is no practical advice. It is just from experience, really, and a lot of the time I worry I am going to say or do the wrong thing.” </p>
<p>For nurses, caring for the dying patient is a unique and privileged position that can make a considerable impact on the care they and their family receive. Their experience coping with fear of upset can teach us important lessons. So too can those who are dying. They just need to be given the opportunity to speak and be heard.</p><img src="https://counter.theconversation.com/content/14186/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Cara Bailey has previously been funded by the Centre for Social Care Research.</span></em></p>
It’s not always easy to talk to someone who is dying. Conversations about future plans and wishes may appear insensitive and fuelled with great pain and distress when it’s somebody we love. For some, not…
Cara Bailey, Lecturer in Nursing , University of Birmingham
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/10082
2012-11-15T19:29:22Z
2012-11-15T19:29:22Z
Reflections on dying from an intensive care physician
<figure><img src="https://images.theconversation.com/files/17677/original/p4yrgbhh-1352959500.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Almost 70% of Australians will die in acute care hospitals – the same propportion that wants to die in their homes.</span> <span class="attribution"><span class="source">nerissa's ring/Flickr</span></span></figcaption></figure><p>As an intensive care physician I’m increasingly confronted with managing patients who are at the end of their life. Australians need to be aware that the way that they will spend the last few days or weeks of their lives is largely predetermined, not by their own wishes but by a medical conveyor belt from the community into acute hospitals and from there into intensive care units.</p>
<p>There’s no conspiracy behind this, it has just happened this way. The drivers include unreal societal expectations of what modern medicine can and, more importantly, cannot offer, fed by daily reports of the latest miracle cures; a medical profession that’s uncomfortable with discussing dying and death; medical specialisation that has resulted in amazing advances but focuses on specific single-organ problems and not the patient’s overall health status; and a lack of doctors who can stand back and recognise patients who are at the end of their lives. All this is reinforced by a society reluctant to openly discuss issues around ageing and dying. The perfect storm.</p>
<p>Interestingly, nobody wants it this way. Almost 70% of Australians want to die in their own homes. Yet, almost 70% will die in acute care hospitals.</p>
<p>People who suddenly become ill in their homes or in the community usually have an ambulance called. They are now on the conveyor belt. Ambulance personnel have no discretionary power – they have to take the patient to an acute hospital for further assessment. </p>
<p>Acute illness or trauma is frightening and most of us have little knowledge of what is available in the acute hospital. So, the journey starts – and for many, it’s appropriate. Medicine can perform some miracles. But for others, the so-called illness state is a normal and expected part of the dying process. Differentiating can be difficult.</p>
<p>The major challenge is to identify a potentially reversible component of a disease. Something that medicine can recognise and reverse – a patient who has fallen and fractured his hip can have it repaired, for instance.</p>
<p>But for many older people, there’s often little that’s amenable to modern medicine. As people age, they collect chronic health conditions or co-morbidities – this is the medicalisation of the ageing process. These conditions can sometimes be controlled but they’re not usually reversible. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/17680/original/n82ttyf4-1352960234.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/17680/original/n82ttyf4-1352960234.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=402&fit=crop&dpr=1 600w, https://images.theconversation.com/files/17680/original/n82ttyf4-1352960234.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=402&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/17680/original/n82ttyf4-1352960234.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=402&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/17680/original/n82ttyf4-1352960234.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=505&fit=crop&dpr=1 754w, https://images.theconversation.com/files/17680/original/n82ttyf4-1352960234.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=505&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/17680/original/n82ttyf4-1352960234.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=505&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Once an ambulance is called for someone who suddenly becomes ill in their home, they are placed on a care conveyor belt.</span>
<span class="attribution"><span class="source">Roland Peschetz</span></span>
</figcaption>
</figure>
<p>Organ function declines markedly with age. Muscles become weaker, bones become more brittle, vital organ function deteriorates, brain function diminishes and wrinkles appear. The rate at which this occurs is encoded at conception and is called apoptosis – the programed death of cells and tissues.</p>
<p>You can optimise your chances of reaching your apoptotic potential with the help of living healthily and modern medicine. Diabetes can be controlled, for instance, and coronary arteries unblocked. Nevertheless, ageing is unavoidable and dying inevitable. Eventually the combination of chronic conditions means that even a small acute problem such as a simple urinary tract infection can result in death. This presents the dilemma for medicine and patients – how far do we go to sustain life?</p>
<p>Doctors are programed to cure. In an age of medical specialisation, they concentrate on incremental improvements in care of their own organ and refer to colleagues for advice about the other problems. As a result, elderly patients are often taking many medications with little or no benefit in the context of their chronic health status. </p>
<p>Clinical trials showing the efficacy of medicines are conducted in selected patients, not 90-year-olds with many chronic health problems. And when the end is finally near, those at the end of their lives come to hospitals for their last few days or weeks. Many are placed on life support machines and can no longer relate to their relatives and friends. Those who are conscious often plead to be allowed to die.</p>
<p>As an intensive care specialist I often become frustrated with my colleagues’ failure to recognise when patients are at the end of life. One of the worst phone calls an intensivist can receive from a colleague goes something like this, “I’ve had a chat to the relatives and they say they want everything done, can you help?” </p>
<p>This puts people like me in a difficult position. First, there’s an inference that what we can do will make the patient better. Then there’s the difficult situation of having to explain for the first time that we believe the patient is at the end of her life and any further active management would be futile.</p>
<p>The speciality of intensive care has a special responsibility to begin a frank and open discussion with our society about the limitations of modern medicine and the inevitability of ageing and dying. Hopefully, this will help people think about how they want to end their life.</p>
<p><em>Vital Signs: Stories from Intensive Care is published by NewSouth Publishing.</em></p>
<p><em><strong>Read articles on related topics from our series</strong> <a href="https://theconversation.com/topics/talking-about-death-and-dying">Talking about death and dying</a></em></p><img src="https://counter.theconversation.com/content/10082/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kenneth Hillman does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
As an intensive care physician I’m increasingly confronted with managing patients who are at the end of their life. Australians need to be aware that the way that they will spend the last few days or weeks…
Kenneth Hillman, Professor of Intensive Care, UNSW Sydney
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/4475
2011-11-29T19:20:06Z
2011-11-29T19:20:06Z
A personal account of life with terminal cancer
<figure><img src="https://images.theconversation.com/files/6047/original/dsc00192-jpg-1322694923-jpeg-1322695685.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">dsc jpg</span> </figcaption></figure><p><strong><em>TALKING ABOUT DEATH AND DYING</em> - We end this series today with an account of one man’s experience of cancer.</strong></p>
<p>Bowel Cancer? Me? How could that be? I’ve been so fit throughout my life, eaten porridge, been as regular as a clock. My diet was always well balanced. There has been no history of cancer in the family. Cancer? Me?</p>
<p>Bleeding led to a CT scan, and, after that, there was no doubt about it. I was told by the surgeon that bowel surgery was very successful and so about eight years ago, I had the first operation. But this turned into eight, each worse than the previous one. And, I’ve ended up with a bag and terminal cancer.</p>
<p>A couple of personal details will set the scene. I am now 72. I’m married and have twin sons who are now about 40. I’m a retired academic from Swinburne University, where my last position was as director of the doctorate in business administration program. </p>
<p>Why so many surgeries you ask? Every six months after the first operation, the cancer kept on reappearing at the point where the bowel was joined. </p>
<p>After the fourth one, a spot appeared on my liver. I had surgery for that. While lying on the gurney after the operation and just after coming to consciousness, the surgeon came up and said, “Sorry, there’s nothing we can do for you. You have so many spots on your liver, I didn’t know where to start.” </p>
<p>Bad news indeed, and delivered with such sensitivity! </p>
<p>After being discharged from the hospital I recovered quite quickly but one day I found myself in a panic attack about dying. My wife knew. My sons knew. But who to talk to? I mentioned this to a friend who suggested I ring <a href="http://www.dwdv.org.au/">Dying With Dignity Victoria</a> for a talk. I was so panicked that I did just that. </p>
<p>The secretary, Rowena White answered the phone and I poured out my woes and debilitating fear to her. She listened with astonishing care. She didn’t interrupt my tearful, fearful statement. And she sympathised in clear terms with astonishing understanding. When I ran out of words, she indicated she would get Dr Rodney Syme, chairman of Dying With Dignity Victoria, to call me back. </p>
<p>I didn’t imagine he would. To my surprise he did, twice. I was not a member of the organisation, just one more person in despair. I met with Rodney, who brought me to the inevitable position that dying is part of life, we just don’t know when that’s going to be. He said that preparation was the key. Prepare to be able to make a choice when the going gets tough. </p>
<p>That down-to-earth sensible talk helped me to shift gear into acceptance of the inevitable. I was also having a couple of heart issues so I asked my heart specialist whether any of the heart pills I am taking would enable me to end my life. </p>
<p>Unwilling as he was to say so, he nevertheless told me that one of the pills I was taking would indeed end my life. I would go to sleep and then my heart would stop.</p>
<p>For that bit of information I am eternally grateful. My abject fear of death ended at that point. The pills gave me choice. I was in control of my life and that would save me from palliative care and people who could keep me alive but in a terrible state. </p>
<p>But I also came to understand that it was an offense for anyone to be near me or assist me in any way to depart this world because of debilitating painful illness. How silly is that? </p>
<p>Politicians, praise be not all, but unhappily most by far, are unwilling to develop policy for physician-assisted death in the face of terminal illness, which is causing great suffering. And most of the physicians I have dealt with are unwilling to talk about it. This is also true of my oncologist. He didn’t want to discuss anything about euthanasia.</p>
<p>Good Lord, we don’t let that happen to our cats and dogs but we allow it with humans.</p>
<p>My loving little dog died in my arms a few years back. Yes, I wept, but he was saved from suffering. Politicians, of any persuasion, fearful of the next election, don’t take into account those with terrible, painful, terminal illnesses. And it’s not just cancer, but motor neurone disease, Parkinson’s disease, Alzheimer’s and so on.</p>
<p>It turned out that I started bleeding from the bowel six months after the liver surgery so the cancer was back in the bowel and I changed hospitals and surgeons. I would’ve bled to death had I not had surgery. The cancer was back on the join yet again. So there was nothing for it but to have more surgery. This time they found that there were two spots on my liver but nothing else. The first surgeon had got it very wrong! </p>
<p>I had both bowel surgery and liver surgery at the same time. But pathological examination of the removed bowel showed there was a large cancer which no one knew anything about. It was very flat, very thin, and was not detected by the CT scans. That explained why the cancer kept appearing on the join. It was upstream of the join. Fortunately that ended the bowel cancer.</p>
<p>I then had chemotherapy and painful as it was and still is, that seemed to end my problems. But cancer is a sneaky beast. I had a follow up CT scan after the chemotherapy and there were two spots on my liver. </p>
<p>So in March this year I had yet another resection. It was a difficult operation because of the placement of the spots. Within three weeks of the operation I contracted septicaemia and had invasive thoracic surgery for that. I recovered.</p>
<p>But in June this year I had a follow up CT scan. There were spots on my liver, lungs, and most probably stomach. I was told that there was no more surgery to be had. </p>
<p>That’s the way things are. I don’t know how much longer I will have to live, months, a year.</p>
<p>But I am at peace. I have all that I need to depart this world and when the going gets rough that’s what I will do. My wife and family are fully informed about this. I have told all my friends. Some are shocked, but by far most say I am courageous. </p>
<p>I don’t think about the end, nor do I look forward to it. I have led a most fortunate life. I am surrounded by family and friends. Sometimes we cry together for what is ending. Sometimes we laugh.</p>
<p>After these experiences, I have three pieces of advice. First, get a second opinion. For all my university degrees, I simply believed the first surgeon. I never asked for a second opinion. </p>
<p>The other is for politicians. Don’t be so lily livered! Take a stand against suffering and most particularly those illnesses which are awful and go on and on. Terminal is just that. So let people end their suffering. </p>
<p>And finally, I have advice for the readers of this article, join the cause and support change. Join an organisation such as Dying With Dignity as soon as possible.</p>
<p><strong>This is the eighth and final part of Talking about death and dying. To read the other instalments, click on the links below:</strong></p>
<p><strong>Part One: <a href="http://theconversation.com/deadly-censorship-games-keeping-a-tight-lid-on-the-euthanasia-debate-2549">Deadly censorship games: keeping a tight lid on the euthanasia debate</a></strong></p>
<p><strong>Part Two: <a href="http://theconversation.com/end-of-the-care-conveyor-belt-death-in-intensive-care-units-249">End of the care conveyor belt: death in intensive are units</a></strong></p>
<p><strong>Part Three: <a href="http://theconversation.com/caring-or-curing-the-importance-of-being-honest-4325">Caring or curing: the importance of being honest</a></strong></p>
<p><strong>Part Four: <a href="http://theconversation.com/death-and-despair-or-peace-and-contentment-why-families-need-to-talk-about-end-of-life-options-4311">Death and despair or peace and contentment: why families need to talk about end-fo-life options</a></strong> </p>
<p><strong>Part Five: <a href="http://theconversation.com/body-or-soul-why-we-dont-talk-about-death-and-dying-4354">Body or soul: why we don’t talk about death and dying</a></strong></p>
<p><strong>Part Six: <a href="http://theconversation.com/planning-your-endgame-advance-care-directives-4250">Planning your endgame: Advance Care Directives</a></strong></p>
<p><strong>Part Seven: <a href="http://theconversation.com/a-challenge-to-our-leaders-why-dont-we-legalise-euthanasia-4463">A challenge to our leaders – why don’t we legalise euthanasia?</a></strong></p><img src="https://counter.theconversation.com/content/4475/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Geoffrey Drummond does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
TALKING ABOUT DEATH AND DYING - We end this series today with an account of one man’s experience of cancer. Bowel Cancer? Me? How could that be? I’ve been so fit throughout my life, eaten porridge, been…
Geoffrey Drummond, Former Research Fellow & Director of Doctor of Business Administration Program, Swinburne University of Technology
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/4463
2011-11-28T19:38:52Z
2011-11-28T19:38:52Z
A challenge to our leaders – why don’t we legalise euthanasia?
<figure><img src="https://images.theconversation.com/files/5952/original/5744519952-25bb1db488-b-jpg-1322460808.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">For some, “fighting to the end” provides purpose but it can seem painfully pointless to others.</span> <span class="attribution"><span class="source">Ed Cave</span></span></figcaption></figure><p><strong><em><a href="https://theconversation.com/topics/talking-about-death-and-dying">TALKING ABOUT DEATH AND DYING</a></em> - We can choose so many of our life experiences, but it seems we can have no say in whether we die in pain or at peace. Today we consider why we don’t have a policy on physician-assisted suicide.</strong></p>
<p>It’s often said that the only certain things in life are death and taxes. In reality, of course, if you’re willing to pay lawyers and accountants enough, you might be able to avoid taxes. But no matter how much you spend on doctors, the best you can do is prolong your mortality. And for some, the cost of extending life isn’t financial, it’s the pain and anguish associated with delaying the inevitable.</p>
<p>Most people would like a quick and painless death, but unfortunately that’s the exception. Death is more likely to come after a long medical struggle with an incurable illness. While death is certain, its timing isn’t, partly because medical science can now prolong the dying process considerably. </p>
<p>For some, “fighting to the end” provides purpose. For others, it can seem painfully pointless.</p>
<h2>False choices</h2>
<p>Some people face unbearable suffering at the end of their lives, suffering in the form of physical pain, mental anguish, or both. The realisation that, in some circumstances, there’s no hope of a cure, let alone any respite from pain, can understandably result in feelings of despair. In these circumstances, it’s not surprising that some people want to die.</p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/5935/original/hand-holding-jpg-1322450697.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5935/original/hand-holding-jpg-1322450697.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=922&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5935/original/hand-holding-jpg-1322450697.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=922&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5935/original/hand-holding-jpg-1322450697.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=922&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5935/original/hand-holding-jpg-1322450697.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1159&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5935/original/hand-holding-jpg-1322450697.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1159&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5935/original/hand-holding-jpg-1322450697.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1159&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Courtesy of Melissa Bloomer</span></span>
</figcaption>
</figure>
<p>If an Australian gets to this point, he or she has three main options.</p>
<p>The first “choice” is to ask that life-prolonging treatment be withheld or withdrawn. This is sometimes called passive voluntary euthanasia and may involve terminal sedation.</p>
<p>The second “option” is to ask for an increase in the medication designed to alleviate pain, even if such an increase may shorten the patient’s life. Legally, it’s necessary for a sympathetic doctor to deny any intention of hastening death. </p>
<p>The third “choice”, which is not a legal option in Australia, is to obtain medical help in administering a life-ending drug. This is called voluntary euthanasia, or physician-assisted suicide.</p>
<h2>Growing debate</h2>
<p>Despite the historically strong opposition to terminally ill people being able to take responsibility for the way their lives end, the issue is subject to increasing debate, both here in Australia and around the world. </p>
<p>The power of the church is declining and cultural values are changing. And, after decades of being told that individuals, not governments, are best placed to make decisions, it’s understandable that a growing number of people want to take responsibility for one of the biggest decisions of all.</p>
<p>Public opinion polls on voluntary euthanasia are becoming more frequent and they show that public support for physician-assisted suicide is overwhelming. Over 80% of Australians believe in the right of the terminally or incurably ill to obtain medical assistance to end their lives.</p>
<p>This strong level of community support reflects the reality that doctors already act to relieve suffering by helping terminally ill people die peacefully. But despite public opinion and medical practice, doctors risk prosecution in Australia if they assist someone to commit suicide.</p>
<p>Current laws condemn people to needless suffering, deny individuals the right to make the most personal of choices and ignore the reality that doctors are already helping people to die. </p>
<h2>Opposition</h2>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/5936/original/4824006671-bbd0537e6e-b-jpg-1322450737.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5936/original/4824006671-bbd0537e6e-b-jpg-1322450737.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5936/original/4824006671-bbd0537e6e-b-jpg-1322450737.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5936/original/4824006671-bbd0537e6e-b-jpg-1322450737.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5936/original/4824006671-bbd0537e6e-b-jpg-1322450737.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5936/original/4824006671-bbd0537e6e-b-jpg-1322450737.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5936/original/4824006671-bbd0537e6e-b-jpg-1322450737.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Joe Flintham</span></span>
</figcaption>
</figure>
<p>Surveys show the public wants legislative reform to give terminally or incurably ill adults the choice of a medically assisted death. So why isn’t anything being done?</p>
<p>Opponents of physician-assisted suicide are articulate, determined and well-funded. Some opponents of change fear abuse of the vulnerable and an inevitable descent towards involuntary euthanasia, while some have strong beliefs about how other people should live and die.</p>
<p>There’s institutional opposition from some churches on the basis that physician-assisted suicide is simply wrong because their faith tells them so. But it seems that it’s elements of the religious hierarchy, not ordinary Christians, who are opposed. </p>
<p>A 2007 Newspoll found that 74% of those respondents who claimed to belong to a religion agreed that doctors should be allowed to provide a lethal dose to a patient experiencing unrelievable suffering and with no hope of recovery. A more recent poll showed that 65% of Australian Christians believed in legal voluntary euthanasia, with 73% aged more than 65 in favour.</p>
<p>So from a democratic point of view, the case for voluntary euthanasia is unassailable. The vast majority of people want it, and the leaders of the groups that are the most strongly opposed to it are at odds with those they claim to represent. </p>
<p>Ideologically, it’s hard to see how a society that increasingly questions the ability of government to make better decisions than individuals can continue to avoid a parliamentary debate about whether the government or the patient should have the final say in whether a treating doctor can assist suicide.</p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/5945/original/5340241223-a6ca40f489-b-jpg-1322454811.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5945/original/5340241223-a6ca40f489-b-jpg-1322454811.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=800&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5945/original/5340241223-a6ca40f489-b-jpg-1322454811.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=800&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5945/original/5340241223-a6ca40f489-b-jpg-1322454811.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=800&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5945/original/5340241223-a6ca40f489-b-jpg-1322454811.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1005&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5945/original/5340241223-a6ca40f489-b-jpg-1322454811.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1005&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5945/original/5340241223-a6ca40f489-b-jpg-1322454811.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1005&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Viktor Hertz</span></span>
</figcaption>
</figure>
<p>While the Greens support the legalisation of voluntary euthanasia, the stated policies of both major parties are completely at odds with majority opinion. No doubt this will change in time, but the longer that takes, the more people will suffer unnecessarily.</p>
<h2>Imaginary slippery slope</h2>
<p>Protection for the vulnerable will be central to any serious debate about legislative change in this area. Opponents of voluntary euthanasia regularly voice their fear of a “slippery slope” that could lead to the killing of vulnerable people. </p>
<p>Similar laws in other countries are designed to address this concern, and a number of government and independent reviews have demonstrated that the laws works as intended.</p>
<p>Legislation for medically-assisted dying exists in the Netherlands, Switzerland, Belgium, Luxembourg, and two American states – Oregon and Washington State. It’s also legal in Montana as a result of a court ruling.</p>
<p>The standard legislative safeguards that exist in these countries include requirements that the patient is acting voluntarily and is not being coerced, that he or she is mentally competent (and not suffering from depression), and that the patient makes a fully informed decision.</p>
<p>In response to the fear of abuse of the vulnerable, research conducted in 2007 found that “rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured, … people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS.” </p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/5938/original/1787466787-132a09b1d7-b-jpg-1322451026.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5938/original/1787466787-132a09b1d7-b-jpg-1322451026.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=685&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5938/original/1787466787-132a09b1d7-b-jpg-1322451026.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=685&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5938/original/1787466787-132a09b1d7-b-jpg-1322451026.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=685&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5938/original/1787466787-132a09b1d7-b-jpg-1322451026.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=861&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5938/original/1787466787-132a09b1d7-b-jpg-1322451026.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=861&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5938/original/1787466787-132a09b1d7-b-jpg-1322451026.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=861&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Federica Marchi</span></span>
</figcaption>
</figure>
<p>The most recent comprehensive study of the subject is the Royal Society of Canada’s Expert Panel report on end-of-life decision-making, which was published in November 2011. One of its conclusions was: “The evidence does not support claims that decriminalizing voluntary euthanasia and assisted suicide poses a threat to vulnerable people”.</p>
<h2>Stepping up to the challenge</h2>
<p>There are lots of reasons for people, and politicians, to be squeamish about this issue. It’s obviously easier to ignore it and hope for the best. But it’s not the job of our representatives to avoid hard issues, it’s their job to confront them. </p>
<p>The public supports legalising assisted suicide, the medical profession is already doing it, and other countries have showed us that safeguards work.</p>
<p>If the only reason stopping us from ending the needless suffering of those approaching death in severe pain is the beliefs of a small number of leaders from a small number of churches, then maybe we should ban abortion, divorce and pre-marital sex as well.</p>
<p><strong>This is the seventh part of <a href="https://theconversation.com/topics/talking-about-death-and-dying">Talking about death and dying</a>. To read the other instalments, click on the links below:</strong></p>
<p><strong>Part One: <a href="http://theconversation.com/deadly-censorship-games-keeping-a-tight-lid-on-the-euthanasia-debate-2549">Deadly censorship games: keeping a tight lid on the euthanasia debate</a></strong></p>
<p><strong>Part Two: <a href="http://theconversation.com/end-of-the-care-conveyor-belt-death-in-intensive-care-units-249">End of the care conveyor belt: death in intensive are units</a></strong></p>
<p><strong>Part Three: <a href="http://theconversation.com/caring-or-curing-the-importance-of-being-honest-4325">Caring or curing: the importance of being honest</a></strong></p>
<p><strong>Part Four: <a href="http://theconversation.com/death-and-despair-or-peace-and-contentment-why-families-need-to-talk-about-end-of-life-options-4311">Death and despair or peace and contentment: why families need to talk about end-fo-life options</a></strong> </p>
<p><strong>Part Five: <a href="http://theconversation.com/body-or-soul-why-we-dont-talk-about-death-and-dying-4354">Body or soul: why we don’t talk about death and dying</a></strong></p>
<p><strong>Part Six: <a href="http://theconversation.com/planning-your-endgame-advance-care-directives-4250">Planning your endgame: Advance Care Directives</a></strong></p>
<p><strong>Part Eight: <a href="http://theconversation.com/a-personal-account-of-life-with-terminal-cancer-4475">A personal account of life with terminal cancer</a></strong></p><img src="https://counter.theconversation.com/content/4463/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Richard Denniss does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
TALKING ABOUT DEATH AND DYING - We can choose so many of our life experiences, but it seems we can have no say in whether we die in pain or at peace. Today we consider why we don’t have a policy on physician-assisted…
Richard Denniss, Adjunct professor, Crawford School, Australian National University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/4250
2011-11-27T19:39:08Z
2011-11-27T19:39:08Z
Planning your endgame: Advance Care Directives
<figure><img src="https://images.theconversation.com/files/5911/original/3912521879-ed1d99681c-b-jpg-1322375469.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">An Advance Directive is a written document that ensures a person’s wishes about the end of their lives are known.</span> <span class="attribution"><span class="source">Luke Addison</span></span></figcaption></figure><p><strong><em><a href="https://theconversation.com/topics/talking-about-death-and-dying">TALKING ABOUT DEATH AND DYING</a></em> – Can we be forced to live despite our wish to have our lives end at some natural point? What options do we have for having a say in how and when we are to die? Today we look at the main recourse for having a say in how our lives end.</strong></p>
<p>Many people in the community fear the end stage of life, not because they’re afraid of dying but because they fear such things as the loss of mental faculties, control and dignity, being a burden on family and not receiving adequate pain relief. </p>
<p>This is often the result of having witnessed distressing deaths of loved ones, as illustrated in cases such as these:</p>
<ul>
<li><p>Daughter: Mum always said she wouldn’t want to be resuscitated if her heart stopped, but they wouldn’t listen.</p></li>
<li><p>Wife: First of all he was stubborn when he was in hospital; he wouldn’t eat – he was just starving himself… so they had to force-feed him. They put a tube down his nose and then they had to tie him in the bed, because he kept pulling it out. He just didn’t want it. </p></li>
</ul>
<p>Every competent person has a right to refuse treatment – even life-saving treatment – and the cases above are actually assault under the law in Australia. </p>
<p>Advance Care Planning provides a way for competent people who fear aggressive end-of-life treatment to record what kind of medical attention they would or wouldn’t want if they no longer had the capacity to make their own decisions. </p>
<p>There are two ways to do this: one is to write down your wishes in an Advance Directive; the second way is to appoint someone to make decisions for you once you’re no longer capable of deciding for yourself. Doing both gives greater certainty. </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/5904/original/254910956-653ff50717-b-jpg-1322352277.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5904/original/254910956-653ff50717-b-jpg-1322352277.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5904/original/254910956-653ff50717-b-jpg-1322352277.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5904/original/254910956-653ff50717-b-jpg-1322352277.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5904/original/254910956-653ff50717-b-jpg-1322352277.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5904/original/254910956-653ff50717-b-jpg-1322352277.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5904/original/254910956-653ff50717-b-jpg-1322352277.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Naomi Ibuki</span></span>
</figcaption>
</figure>
<h2>Advance Directives</h2>
<p>An Advance Directive is a written document that ensures a person’s wishes are known. It also assists health-care providers to make decisions in line with what the patient desires and – because Advance Directives are <a href="http://www.archi.net.au/documents/resources/models/acp/evidence-base/LegalFAQ.pdf">legally binding in every state and territory</a> in Australia – it gives people confidence that their wishes will be carried out. </p>
<p>You can also appoint a substitute decision maker (called an Enduring Guardian, Medical Agent or Enduring Power of Attorney for health matters) to make personal, lifestyle and/or medical and dental treatment decisions on your behalf, in case you lose the capacity to do so yourself. </p>
<p>This option is available in every state and territory except the Northern Territory, and the appointed person is usually a trusted relative or friend.</p>
<p>You can also appoint more than one substitute decision maker and say how they’re to make the decisions. The chosen person must agree to the appointment, should understand your wishes and be prepared to carry them out. </p>
<p>The appointment must be in writing, in an approved form, which must be signed by the person choosing their substitute decision maker/s; by the person or people appointed and; by an independent witness (depending on the state or territory this might be a solicitor, a justice of the peace or a Registrar of the Courts). </p>
<h2>What if no-one has been appointed?</h2>
<p>If there’s no Advance Directive and you haven’t appointed a substitute decision-maker, the legislation in each state/ territory provides for decisions to be made by the first person in a specified list. </p>
<p>In most states and territories, the order of authority starts with spouse (including de facto or same-sex spouse) and if there’s no spouse it moves to a non-professional carer. If there’s no carer, it’s usually or a close relative or friend of the patient. </p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/5908/original/392676954-0b2c7de3ab-o-jpg-1322374941.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5908/original/392676954-0b2c7de3ab-o-jpg-1322374941.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=379&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5908/original/392676954-0b2c7de3ab-o-jpg-1322374941.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=379&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5908/original/392676954-0b2c7de3ab-o-jpg-1322374941.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=379&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5908/original/392676954-0b2c7de3ab-o-jpg-1322374941.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=476&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5908/original/392676954-0b2c7de3ab-o-jpg-1322374941.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=476&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5908/original/392676954-0b2c7de3ab-o-jpg-1322374941.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=476&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Garry Wilmore</span></span>
</figcaption>
</figure>
<p>It’s important to note that that the order of authority isn’t based on next-of-kin and the person who has the legal right to make health-care decisions may not be the person the patient themselves would’ve chosen.</p>
<h2>How well do such arrangements work?</h2>
<p>There’s a great deal of confusion in hospitals, residential aged-care facilities, and in the general community about Advance Care Planning (ACP). This confusion not only means that patients’ wishes for end-of-life care are often not respected, but it can also put health-care providers at risk of serious legal consequences.</p>
<p>Part of the confusion is caused by the fact that the law relating to ACP is different in every Australian state and territory, each of which uses different terminology and different documents. To start to address this issue, the Australian Government recently released the <a href="http://www.palliativecare.org.au/Portals/46/Policy/Health%20system%20reform%20-%20guidance%20document%20-%20web%20version.pdf">National End-of-Life Framework</a>, which is promoting Advance Care Planning consistency across Australia.</p>
<p>A full listing of the laws in each state and territory can be found at the end of a discussion booklet <a href="http://aslarc.scu.edu.au">End-of-life care for people with dementia</a> (find downloads along the top menu line, scroll down to Publications and Reports, to the fourth document) published by <a href="http://www.alzheimers.org.au/">Alzheimer’s Australia</a>.</p>
<p>Most people want at least a measure of predictability and self-determination in relation to death and dying. Advance Care Planning can help to provide that.</p>
<p><br></p>
<p><strong>This is the sixth part of <a href="https://theconversation.com/topics/talking-about-death-and-dying">Talking about death and dying</a>. To read the other instalments, click on the links below:</strong></p>
<p><strong>Part One: <a href="http://theconversation.com/deadly-censorship-games-keeping-a-tight-lid-on-the-euthanasia-debate-2549">Deadly censorship games: keeping a tight lid on the euthanasia debate</a></strong></p>
<p><strong>Part Two: <a href="http://theconversation.com/end-of-the-care-conveyor-belt-death-in-intensive-care-units-249">End of the care conveyor belt: death in intensive care units</a></strong></p>
<p><strong>Part Three: <a href="http://theconversation.com/caring-or-curing-the-importance-of-being-honest-4325">Curing or caring: the importance of being honest</a></strong></p>
<p><strong>Part Four: <a href="http://theconversation.com/death-and-despair-or-peace-and-contentment-why-families-need-to-talk-about-end-of-life-options-4311">Death and despair or peace and contentment: why families need to talk about end-of-life options</a></strong></p>
<p><strong>Part Five: <a href="http://theconversation.com/body-or-soul-why-we-dont-talk-about-death-and-dying-4354">Body or soul: why we don’t talk about death and dying</a></strong></p>
<p><strong>Part Seven: <a href="http://theconversation.com/a-challenge-to-our-leaders-why-dont-we-legalise-euthanasia-4463">A challenge to our leaders – why don’t we legalise euthanasia?</a></strong></p>
<p><strong>Part Eight: <a href="http://theconversation.com/a-personal-account-of-life-with-terminal-cancer-4475">A personal account of life with terminal cancer</a></strong></p><img src="https://counter.theconversation.com/content/4250/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Colleen Cartwright does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
TALKING ABOUT DEATH AND DYING – Can we be forced to live despite our wish to have our lives end at some natural point? What options do we have for having a say in how and when we are to die? Today we look…
Colleen Cartwright, Professor & Director, ASLaRC Aged Services, Southern Cross University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/4354
2011-11-24T19:24:42Z
2011-11-24T19:24:42Z
Body or soul: why we don’t talk about death and dying
<figure><img src="https://images.theconversation.com/files/5856/original/Byzantine_Metaphor_For_The_Soul_and_Death.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Byzantine metaphor for the soul and death – historical and philosophical reasons underlie our unwillingness to talk about death.</span> <span class="attribution"><span class="source">Ken & Nyetta/Flickr</span></span></figcaption></figure><p><strong><em><a href="https://theconversation.com/topics/talking-about-death-and-dying">TALKING ABOUT DEATH AND DYING</a></em> – What are the cultural and historical and reasons for not talking about death? Today, we have a philosopher’s perspective on the silence that is seeing so many die without dignity.</strong></p>
<p>A decade into the 21st century, a number of people still die unjustifiably delayed, painful, poorly supported and undignified deaths in Australian hospitals and other health-care institutions.</p>
<p>This happens despite considerable progress in the area of official statements and legislation designed to give greater control of dying to individuals, and to make the dying process as comfortable as possible. </p>
<p>The progress has resulted from the interaction of many factors, including the education, the relative secularisation and democratisation of society, and the rejection of traditional authorities (including medical paternalism).</p>
<p>All states in Australia have guardianship legislation that provides for substitute decision making and, in most cases, advance health directives, both of which extend individuals’ decision-making powers beyond their loss of competence. </p>
<p><a href="http://www.medicalboard.gov.au/Codes-Guidelines-Policies.aspx">Medical codes of ethics</a> and <a href="http://www.mja.com.au/public/issues/186_12_180607/cla11246_fm.pdf">clinical guidelines</a> explicitly indicate the importance of respecting patients’ rights, goals and values, as well as good communication, advance care planning, and recognising when continuing treatment is more harmful than beneficial. </p>
<h2>A crucial turning point</h2>
<p>Why then, despite these developments, do bad deaths continue? And why do the conversations that need to happen prior to, and during the dying process, fail to take place? The short answer is that while important cultural forces have in recent years been challenged, they continue to exert considerable influence. </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/5854/original/Descartes.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5854/original/Descartes.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=735&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5854/original/Descartes.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=735&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5854/original/Descartes.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=735&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5854/original/Descartes.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=923&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5854/original/Descartes.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=923&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5854/original/Descartes.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=923&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Portrait of René Descartes (1596-1650)</span>
<span class="attribution"><span class="source">After Frans Hals</span></span>
</figcaption>
</figure>
<p>The complex interaction of a group of ideas, beliefs and practices supports a medical and social culture that, often unwittingly, and indeed, usually in good faith, continues to resist the completion of the work begun.</p>
<p>Western societies avoid talking about death, in part because we have lost faith in transcendent life. Somewhere deep down we know that death is really the end of existence – who wants to face that? </p>
<p>Ironically, the official teachings of churches don’t insist on treatment at all costs, but we have developed a general psychological and social resistance to talking about death, and seeing it as a natural part of life. This was part and parcel of life prior to the Enlightenment.</p>
<p>At that time, the philosopher Descartes determined, on the basis that he could doubt everything except the fact that he was doubting (and therefore thinking), that the only thing of which he could be certain was the mind, which must therefore be distinct and different from the body, whose existence he could doubt. </p>
<p>He therefore “split” the body from the mind, and this dualistic picture of humanity was to have enormous influence.</p>
<p>Despite Descartes’ philosophical doubts about the body, splitting it from the mind “released” it to those who wished to investigate it, from the church which retained sovereignty over the mind, or the soul. </p>
<h2>The drawbacks of progress</h2>
<p>Where once the church exerted authority over everything, science moved in to claim nature as its legitimate territory. Science and technology, including medical science and its relentless technological progress, developed apace.</p>
<p>But this progress occurred more or less in isolation from the soul or the mind, and from the emotions and the values that the church had retained responsibility for. This had two results. </p>
<p>Despite the fact that those with a belief in the afterlife may not be as desperate to cling to this one as those without such a belief, the sanctity of life continued as an important value in what initially continued to be strongly religious societies. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/5846/original/Cathedral_Cologne.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/5846/original/Cathedral_Cologne.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5846/original/Cathedral_Cologne.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5846/original/Cathedral_Cologne.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5846/original/Cathedral_Cologne.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5846/original/Cathedral_Cologne.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5846/original/Cathedral_Cologne.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Sanjprak</span></span>
</figcaption>
</figure>
<p>Second, medical practice expanded its technological successes in the absence of a balancing or integrating focus on matters of the soul – those individual values, emotions and wishes. Until recently, the idea of refusing treatment advised by one’s doctor was unheard of.</p>
<h2>Difficult habits to break</h2>
<p>Medicine’s traditional ethic has been to benefit patients by treating them and not “giving up”, certainly not transgressing the idea that life is sacred and ought not be brought to an end. </p>
<p>The potential harms in this singular pursuit have been difficult for the profession to acknowledge, in part because being responsible for death has been regarded as a far greater harm. Medicine is all about curing disease, and saving and preserving life.</p>
<p>Hence, the great difficulty in talking about death, in recognising the point at which treatment harms begin to outweigh benefits, and in participating at the end of life in ways that suggest any active and responsible role in death. Because this has been a matter of professional cultural anathema for a significant time, the calls for change have not produced immediate results.</p>
<p>Ironically, it’s intensive care physicians who have been in the vanguard of the medical profession’s internal movement for change. </p>
<p>One might think that those who use the highest technology to support patients would be the last to surrender their therapeutic and social power. But intensivists are more able to see the whole person, who may be harmed by further interventions after having come so far and spent so long in the medical system. </p>
<h2>Others’ responsibilities</h2>
<p>Some super-specialists, on the other hand, are focused on the organ of their speciality – the heart, the kidney, the brain and so forth – and don’t see the bigger picture. </p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/5853/original/Old_headstones_in_Maxton_Churchyard_-_geograph.org.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5853/original/Old_headstones_in_Maxton_Churchyard_-_geograph.org.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5853/original/Old_headstones_in_Maxton_Churchyard_-_geograph.org.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5853/original/Old_headstones_in_Maxton_Churchyard_-_geograph.org.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5853/original/Old_headstones_in_Maxton_Churchyard_-_geograph.org.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5853/original/Old_headstones_in_Maxton_Churchyard_-_geograph.org.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5853/original/Old_headstones_in_Maxton_Churchyard_-_geograph.org.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Walter Baxter</span></span>
</figcaption>
</figure>
<p>“Organologists” know they can bring about improvements in organ function, and so they do, and there’s no need to talk about death. Indeed, to do so would imply to the patient that you’ve lost hope, and medicine traditionally is the bringer of hope. It’s certainly the case that <a href="http://hea.sagepub.com/content/12/1/87.abstract">some specialists remain loathe</a> to refer patients to palliative care services, as this would mean giving up and failing to continue to offer hope. </p>
<p>Finally, there’s said to be a measure of collusion between society and medicine, orchestrated via the media’s unrealistic and unbalanced portrayal of medical progress and success. </p>
<p>Expectations of continuing therapeutic options in the face of overwhelming disease serve to delay the inevitable conversations crucial in developing a mutual understanding of how dying should occur.</p>
<p>Despite important progress, cultural forces affecting both patients and doctors continue to prevent us from talking openly about the end of our lives. Much work remains to be done.</p>
<p><br></p>
<p><strong>This is the fifth part of <a href="https://theconversation.com/topics/talking-about-death-and-dying">Talking about death and dying</a>. To read the other instalments, click on the links below:</strong></p>
<p><strong>Part One: <a href="http://theconversation.com/deadly-censorship-games-keeping-a-tight-lid-on-the-euthanasia-debate-2549">Deadly censorship games: keeping a tight lid on the euthanasia debate</a></strong></p>
<p><strong>Part Two: <a href="http://theconversation.com/end-of-the-care-conveyor-belt-death-in-intensive-care-units-249">End of the care conveyor belt: death in intensive care units</a></strong></p>
<p><strong>Part Three: <a href="http://theconversation.com/caring-or-curing-the-importance-of-being-honest-4325">Curing or caring: the importance of being honest</a></strong></p>
<p><strong>Part Four: <a href="http://theconversation.com/death-and-despair-or-peace-and-contentment-why-families-need-to-talk-about-end-of-life-options-4311">Death and despair or peace and contentment: why families need to talk about end-of-life options</a></strong></p>
<p><strong>Part Six: <a href="http://theconversation.com/planning-your-endgame-advance-care-directives-4250">Planning your endgame: Advance Care Directives</a></strong></p>
<p><strong>Part Seven: <a href="http://theconversation.com/a-challenge-to-our-leaders-why-dont-we-legalise-euthanasia-4463">A challenge to our leaders – why don’t we legalise euthanasia?</a></strong></p>
<p><strong>Part Eight: <a href="http://theconversation.com/a-personal-account-of-life-with-terminal-cancer-4475">A personal account of life with terminal cancer</a></strong></p><img src="https://counter.theconversation.com/content/4354/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Malcolm Parker currently receives funding from the Australian Research Council and the Australian Learning and Teaching Council.</span></em></p>
TALKING ABOUT DEATH AND DYING – What are the cultural and historical and reasons for not talking about death? Today, we have a philosopher’s perspective on the silence that is seeing so many die without…
Malcolm Parker, Associate Professor & Head of Ethics, Law and Professional Practice, The University of Queensland
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/4311
2011-11-23T19:16:13Z
2011-11-23T19:16:13Z
Death and despair or peace and contentment: why families need to talk about end-of-life options
<figure><img src="https://images.theconversation.com/files/5805/original/Andy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Talking to your family about your end-of-life preferences will save them the pain of having to decide for you.</span> <span class="attribution"><span class="source">Andy/Flickr</span></span></figcaption></figure><p><strong><em><a href="https://theconversation.com/topics/talking-about-death-and-dying">TALKING ABOUT DEATH AND DYING</a></em> – Why don’t we talk about death and dying? A simple albeit difficult conversation could mean the difference between a peaceful and undignified death for individuals, between trauma and peace for families. Hopefully, Brian’s story will inspire people to talk about life’s greatest inevitability.</strong></p>
<h2>An undignified end</h2>
<p>Brian, aged 73 years, had recently been discharged from hospital following a minor leg surgery due to poor circulation. Prior to this surgery, Brian regarded himself as “fit and healthy”, although he was diagnosed with hypertension four years earlier, and took medication for it. </p>
<p>Visiting his home one day, Brian’s sister found him unconscious and called an ambulance. Investigation revealed Brian had suffered a significant stroke to his frontal lobe so he was admitted to the Intensive Care Unit (ICU) and kept alive on life support. Further investigation showed recovery with intact neurological function was impossible for him. </p>
<p>His only relative – his sister Joan – was contacted and informed of the severity of Brian’s condition, and of the unlikely chance he’d regain consciousness. Brian hadn’t prepared an advance care plan, or discussed his preferences in the event of becoming critically ill, with his sister. </p>
<p>When Joan met the ICU consultant, she was informed there was little hope of any sort of meaningful recovery, and that if Brian was taken off life support, he would most surely die. </p>
<p>Joan was unsure about what Brian would want and pleaded for him to be given more time to improve, and for her to consider what his wishes might have been before any decisions were made. Brian remained ventilator-dependent in the ICU for nine days, his condition further complicated by the development of pneumonia and septicaemia. </p>
<p>Despite the continued aggressive treatment he received, he died in the ICU, never having regained consciousness. The prolonged aggressive treatment, associated suffering and loss of autonomy and dignity that Brian endured, in addition to the distress that his sister suffered, could easily have been avoided if Brian had completed an advance care plan. Or if he’d had discussions with his sister, Joan, or his GP, about how he would like to be cared for in the event of serious or life-threatening illness.</p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/5742/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5742/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=820&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5742/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=820&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5742/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=820&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5742/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1031&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5742/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1031&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5742/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1031&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Photo courtesy of Melissa Bloomer </span></span>
</figcaption>
</figure>
<h2>Not untypical</h2>
<p>Just like Brian, most people in Australian society aren’t comfortable discussing their death even though it’s becoming a more important topic as the population ages. </p>
<p>People over 65 years of age account for 13% of Australia’s total population and that figure is projected to rise to 25% by 2056. Chronic illness is the leading cause of death in Australia, with 2006 statistics showing that 140,000 people die every year from such diseases as diabetes, dementia and heart disease, and this number is also expected to increase. </p>
<p>So it’s vital for individuals, while they’re still well enough, to have conversations with their family about what they’d want if they became very ill or were dying. </p>
<p>It’s important because when an individual is no longer able to make decisions, often doctors turn to the next-of-kin or other family members for guidance about what to do, just as they did with Brian. And this is not just for guidance about a person’s official resuscitation status, such as “Not for Resuscitation”. </p>
<p>There are many other situations where a seriously ill person’s family could be asked to make tough decisions:</p>
<ul>
<li><p>Would you want to be kept alive by machines in ICU? </p></li>
<li><p>Would you want to have “everything” done to save you if your quality of life would never be the same? </p></li>
<li><p>Would you prefer to be kept comfortable and free of pain or distress, and allowed to die? </p></li>
</ul>
<p>While these may seem like unlikely and hypothetical scenarios to a healthy person, discussing these things with loved ones while they’re well may save a family a lot of grief later. </p>
<h2>Ripple effect</h2>
<p>Studies show the anxiety and depression caused in family members by the burden of having to make life-or-death decisions during the time of a person’s serious illness is huge. Some family members even <a href="http://ajrccm.atsjournals.org/cgi/reprint/171/9/987">develop post-traumatic stress symptoms</a> as a result of such experiences. </p>
<p>Some family members feel guilty about their decision for a long time. Others find they can’t contribute to the decision making, and they feel guilty about this inability.</p>
<p>Situations when no-one knows what the individual would’ve wanted can also lead to conflict in families. And the longer it takes for the family to come to an agreement, the longer the person continues to suffer. It’s not what anyone wants to go through. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/5804/original/490011640_3a29ac5d68_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/5804/original/490011640_3a29ac5d68_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5804/original/490011640_3a29ac5d68_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5804/original/490011640_3a29ac5d68_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5804/original/490011640_3a29ac5d68_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5804/original/490011640_3a29ac5d68_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5804/original/490011640_3a29ac5d68_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">blacque_jacques</span></span>
</figcaption>
</figure>
<p>Given that our population is ageing at a significant rate, it’s really important that families have these discussions early, and include the family doctor so if something terrible does happen, the right decision, based on an individual’s own preferences, is made. </p>
<p>If a doctor starts the conversation, it’s best not to resist. The more doctor knows about how an individual wants to be cared for, the better.</p>
<p>So the advice is simple: start the conversation with your loved ones and your doctor before you get sick. Be sure they know what you would want in the event that something happens in the future. </p>
<p>Get to know what your loved ones would want too. While the conversation may be uncomfortable at first, it can save a lot of heartache later on.</p>
<p><strong>This is the fourth part of <a href="https://theconversation.com/topics/talking-about-death-and-dying">Talking about death and dying</a>. To read the other instalments, click on the links below:</strong></p>
<p><strong>Part One: <a href="http://theconversation.com/deadly-censorship-games-keeping-a-tight-lid-on-the-euthanasia-debate-2549">Deadly censorship games: keeping a tight lid on the euthanasia debate</a></strong></p>
<p><strong>Part Two: <a href="http://theconversation.com/end-of-the-care-conveyor-belt-death-in-intensive-care-units-249">End of the care conveyor belt: death in intensive care units</a></strong></p>
<p><strong>Part Three: <a href="http://theconversation.com/caring-or-curing-the-importance-of-being-honest-4325">Caring or curing: the importance of being honest</a></strong></p>
<p><strong>Part Five: <a href="http://theconversation.com/body-or-soul-why-we-dont-talk-about-death-and-dying-4354">Body or soul: why we don’t talk about death and dying</a></strong></p>
<p><strong>Part Six: <a href="http://theconversation.com/planning-your-endgame-advance-care-directives-4250">Planning your endgame: Advance Care Directives</a></strong></p>
<p><strong>Part Seven: <a href="http://theconversation.com/a-challenge-to-our-leaders-why-dont-we-legalise-euthanasia-4463">A challenge to our leaders – why don’t we legalise euthanasia?</a></strong></p>
<p><strong>Part Eight: <a href="http://theconversation.com/a-personal-account-of-life-with-terminal-cancer-4475">A personal account of life with terminal cancer</a></strong></p><img src="https://counter.theconversation.com/content/4311/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Melissa Bloomer does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
TALKING ABOUT DEATH AND DYING – Why don’t we talk about death and dying? A simple albeit difficult conversation could mean the difference between a peaceful and undignified death for individuals, between…
Melissa Bloomer, Lecturer, School of Nursing and Midwifery, Monash University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/4325
2011-11-22T19:16:48Z
2011-11-22T19:16:48Z
Caring or curing: the importance of being honest
<figure><img src="https://images.theconversation.com/files/5746/original/2755612875_00dd54bceb_z.jpg?ixlib=rb-1.1.0&rect=17%2C18%2C600%2C394&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Patients want their doctor to tell them the truth.</span> <span class="attribution"><span class="source">Michal Porebiak.</span></span></figcaption></figure><p><strong><em><a href="https://theconversation.com/topics/talking-about-death-and-dying">TALKING ABOUT DEATH AND DYING</a></em> – Why is it we don’t talk about the greatest inevitability in our lives? We explore the consequences of this silence in this series, today considering the issue from an oncologist’s point of view.</strong></p>
<p>Mrs Jones is a delightful 75-year-old church volunteer diagnosed with cancer. Recently, she required surgery to remove fluid from her chest cavity. Much to her relief, she returned home after a prolonged recovery. </p>
<p>Some months later, the fluid in her chest was drained again but the progression of disease was obvious. Encouraged by her family, she decided to try chemotherapy. Her stated intent was that she wasn’t yet ready to die and would do anything possible to beat her cancer. </p>
<p>She felt buoyed by the first cycle of chemotherapy, but the second landed her in hospital – with all the side effects she had been warned to expect. </p>
<p>She left but spent the next two weeks in bed, weak and washed out. But her original intent remained strong and when it came time for the third cycle, she decided not to reveal just how ill she had been feeling. </p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/5752/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5752/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=820&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5752/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=820&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5752/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=820&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5752/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1031&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5752/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1031&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5752/original/Hands_picture.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1031&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Image courtesy of Melissa Bloomer</span></span>
</figcaption>
</figure>
<p>She feared, reasonably, that no one would entertain giving her more chemotherapy, if they found out the truth. So she went on to have more treatment, which destroyed her body’s meagre reserve. For three days she was delirious, unable to recognise her own children, looking a sorry shell of her former self. </p>
<p>Resuscitated with antibiotics and fluids, she improved. But scans showed her cancer had progressed. Doctors are notorious for getting the prognosis wrong but in my estimation, she had only a few weeks to live. </p>
<h2>Talking about it</h2>
<p>As I sat by her bedside the first day she could talk coherently, imagine my surprise when she asked me what chemotherapy I was planning next. My first thought was that she was still delirious. </p>
<p>I thought of firmly stamping out the idea of further chemotherapy in her mind, pointing only to her recent near-death experience. But it seemed odd that an intelligent woman would behave like this. </p>
<p>So instead of answering her question, I asked her, Mrs Jones, what do you expect more chemotherapy to achieve?</p>
<p>To prolong my life, of course, she responded, looking curiously at me. </p>
<p>This is the oncologist’s dilemma – how to tell the truth without extinguishing hope. How to tell Mrs Jones that her lifespan was limited, that further chemotherapy would be futile, or even hasten death, and that her remaining days would be much better spent cherishing life than fighting off unnecessary toxicities. </p>
<p>How do you shine a light on frankly unrealistic expectations without coming across as uncaring? </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/5757/original/4427257118_c9114ef3b9_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5757/original/4427257118_c9114ef3b9_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=902&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5757/original/4427257118_c9114ef3b9_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=902&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5757/original/4427257118_c9114ef3b9_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=902&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5757/original/4427257118_c9114ef3b9_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1134&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5757/original/4427257118_c9114ef3b9_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1134&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5757/original/4427257118_c9114ef3b9_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1134&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">maxbasel</span></span>
</figcaption>
</figure>
<p>Patients like Mrs Jones abound in practice. Many are shocked when confronted by the news that there’s no other active treatment for them. Some claim that they’d never been told this could happen, others say they never expected this to happen to them. Many become angry, many others depressed. </p>
<p>Family members accuse the oncologist of giving up: Once you said that, Dad just gave up and died, one tearful daughter sobs. </p>
<p>Whatever you do, don’t tell my wife it’s serious, implores a husband. </p>
<p>It’s no wonder that faced with such intense emotions, sometimes it seems easier to bow to a patient’s wishes and write up some more chemotherapy than have a somber discussion about life and death. </p>
<h2>Known unknowns</h2>
<p>It’s my experience that most patients recognize when they’re seriously or incurably ill. Denial is a word that’s much bandied, but what I see is that many factors determine the readiness of a patient to voice publicly what he or she senses privately. </p>
<p>These factors may have to do with culture, religion, a sense of responsibility or a deep personal philosophy about how one ought to conduct oneself at the end of life. </p>
<p>All these factors are to be respected. But I have yet to come across a patient who, no matter what the circumstances, doesn’t appreciate compassion, empathy and honesty from a doctor.</p>
<p>But what does honesty mean in this context? For Mrs Jones, does honesty mean telling her bluntly that chemotherapy is a waste of time, or that she should open her eyes to her poor prognosis? </p>
<p>You might recoil at the thought but plenty of patients find themselves on the receiving end of blunt facts that terrify them and their loved ones. </p>
<p>So I think that honesty must be tempered by that other vital quality in medicine, empathy. Empathy is the art of putting yourself into another person’s shoes, to imagine what it must be like for the patient going through the experience. </p>
<p>Empathy is difficult to cultivate and when time is short and queues of patients long, it gets even harder. But Mrs Jones and patients like her need their doctor to say, ‘I can see how eager you are to keep fighting. Let’s discuss how I can help’.</p>
<p>Patients want the truth from their oncologist and they are entitled to the whole truth or just part thereof. One patient likes counting the exact number of spots in the liver, another wants the facts in broader brush strokes. One wants to know what a 10% survival rate means, another just whether he will be around this Christmas. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/5759/original/6323209329_70c6fdd5da_o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/5759/original/6323209329_70c6fdd5da_o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5759/original/6323209329_70c6fdd5da_o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5759/original/6323209329_70c6fdd5da_o.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5759/original/6323209329_70c6fdd5da_o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5759/original/6323209329_70c6fdd5da_o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5759/original/6323209329_70c6fdd5da_o.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">s_falkow</span></span>
</figcaption>
</figure>
<h2>Degrees of truthfulness</h2>
<p>If I had thought in my earlier days that there was only one kind of truth, what I see clearly now is that even truth comes in different shades. And it is my obligation as a doctor to know my patient well enough to tailor the truth to the individual. </p>
<p>I don’t lie to patients but I also don’t feel compelled to make a reluctant patient an expert on their diagnosis or prognosis. With a good line of communication, things tend to work out. </p>
<p>There seems to be a general sense within and outside the medical profession that good communication skills are inherent, that people have it or they don’t. </p>
<p>Medical schools implicitly support this notion by interviewing school leavers with an eye to the way they communicate. But teaching doctors better communication isn’t so much a task as a journey. </p>
<p>Some of the best hospitals around the world are now paying attention to the subject, once considered ‘soft’, because they are listening to the tide of patients demanding better communication as a key component of better care. </p>
<p>Doctors understand that their satisfaction is tied to patient satisfaction; hospitals realize that better communication leads to fewer complaints. Open, compassionate and empathetic communication is good for doctors, good for patients, and society should expect nothing less.</p>
<h2>A wish fulfilled for Mrs Jones</h2>
<p>So what happened to Mrs Jones? She told me in private one day that the main reason she had been fighting so hard was to see her first grandchild get married in six months’ time. Without my saying anything, she added, ‘But I am beginning to think that’s not going to happen.’</p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/5756/original/58764626_680fa4d8bb_o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5756/original/58764626_680fa4d8bb_o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=405&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5756/original/58764626_680fa4d8bb_o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=405&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5756/original/58764626_680fa4d8bb_o.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=405&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5756/original/58764626_680fa4d8bb_o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=509&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5756/original/58764626_680fa4d8bb_o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=509&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5756/original/58764626_680fa4d8bb_o.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=509&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Often people hang on for one last thing, for Mrs Jones it was a wedding.</span>
<span class="attribution"><span class="source">kirinqueen</span></span>
</figcaption>
</figure>
<p>With her permission, I spoke to her grandson. He revealed he’d been considering an earlier wedding but didn’t wish to upset his grandmother by sharing his concerns about her failing health. It turned out that not only Mrs Jones, but her entire family, quietly realized the seriousness of her disease. </p>
<p>Mrs Jones went home to preside proudly over the wedding of her grandson some weeks later. Her final wish fulfilled, she signed an advance care directive, which meant that when she fell ill within the next week she received no heroic measures but was allowed to die peacefully. </p>
<p>One of the privileges of being an oncologist is working closely with skilled people who routinely give bad news and manage end-of-life care sensitively while retaining the admiration and loyalty of their patients. </p>
<p>What I see as a common thread between these people is that they’re always striving to do things better and that they see medicine as more than a job, they see it as a vocation. And if your vocation is to first do no harm, you will always look for better ways of telling the truth.</p>
<p><strong>This is the third part of <a href="https://theconversation.com/topics/talking-about-death-and-dying">Talking about death and dying</a>. To read the other instalments, click on the links below:</strong></p>
<p><strong>Part One: <a href="http://theconversation.com/deadly-censorship-games-keeping-a-tight-lid-on-the-euthanasia-debate-2549">Deadly censorship games: keeping a tight lid on the euthanasia debate</a></strong></p>
<p><strong>Part Two: <a href="http://theconversation.com/end-of-the-care-conveyor-belt-death-in-intensive-care-units-249">End of the care conveyor belt: death in intensive care units</a></strong></p>
<p><strong>Part Four: <a href="http://theconversation.com/death-and-despair-or-peace-and-contentment-why-families-need-to-talk-about-end-of-life-options-4311">Death and despair or peace and contentment: why families need to talk about end-fo-life options</a></strong> </p>
<p><strong>Part Five: <a href="http://theconversation.com/body-or-soul-why-we-dont-talk-about-death-and-dying-4354">Body or soul: why we don’t talk about death and dying</a></strong></p>
<p><strong>Part Six: <a href="http://theconversation.com/planning-your-endgame-advance-care-directives-4250">Planning your endgame: Advance Care Directives</a></strong></p>
<p><strong>Part Seven: <a href="http://theconversation.com/a-challenge-to-our-leaders-why-dont-we-legalise-euthanasia-4463">A challenge to our leaders – why don’t we legalise euthanasia?</a></strong></p>
<p><strong>Part Eight: <a href="http://theconversation.com/a-personal-account-of-life-with-terminal-cancer-4475">A personal account of life with terminal cancer</a></strong></p><img src="https://counter.theconversation.com/content/4325/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ranjana Srivastava does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
TALKING ABOUT DEATH AND DYING – Why is it we don’t talk about the greatest inevitability in our lives? We explore the consequences of this silence in this series, today considering the issue from an oncologist’s…
Ranjana Srivastava, Medical Oncologist, Monash Health
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/249
2011-11-21T19:40:17Z
2011-11-21T19:40:17Z
End of the care conveyor belt: death in intensive care units
<figure><img src="https://images.theconversation.com/files/5703/original/2532727091_9f679fb8cd_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Around 70% of Australians would like to die at home but over half will eventually die undignified and painful deaths in hospitals.</span> <span class="attribution"><span class="source">Mark Hillary</span></span></figcaption></figure><p><strong><em><a href="https://theconversation.com/topics/talking-about-death-and-dying">TALKING ABOUT DEATH AND DYING</a></em> - Why is it we don’t talk about the greatest inevitability in our lives? Why don’t we talk about death and dying? Today we hear from a professor of intensive care, who looks at why so many people end their lives in Intensive Care Units.</strong></p>
<p>Intensive Care Units (ICU) were only just being established when I first became a specialist in 1981. They were small and intended for patients with life-threatening illnesses who could be supported for a few days to make a full recovery. </p>
<p>Admitted patients included sufferers of serious trauma or infections and those who had complex surgery, such as open-heart operations.</p>
<p>Thirty years later, the speciality has its own unique and legitimate place in medicine. Every large hospital has an ICU. I started with six beds in the early 1980s and have recently moved into a 60-bed unit. </p>
<p>The operating cost for each bed is over $1 million annually.</p>
<p>Their role has also changed. It’s now difficult to die peacefully in a hospital and an increasing number of our community will spend their last few days in an ICU. The change is not a conspiracy; it has just happened but it offers little benefit to anyone. </p>
<p>My grandfather died peacefully at home in 1959. It’s different now. If you become seriously ill, as most people do at the natural end of their life, urgent help is usually sought. An ambulance is called; you are transported to the emergency department where active resuscitation occurs. </p>
<p>This is a natural course of events as there may be a treatable component to the disease. Also, few people have advance care directives, which state their end-of-life wishes. And seriously ill people dying at home can be frightening for carers.</p>
<h2>Futile care</h2>
<p>Many of us will be put on this conveyor belt, eventually finding our way to an ICU. Along the way you’ll be cared for by professionals, such as general practitioners, ambulance personnel, and hospital clinicians. </p>
<p>Because medicine has become so specialised, they often won’t understand each other’s boundaries, so it’s more than likely that you’ll continue your journey, often ending up on a life-support machine for the last few days of your life. </p>
<p>Intensive care is seen as the natural place for the seriously ill. The challenge is to recognise whether it’s appropriate to sustain life with all the machines and drugs that we have in ICUs. Because we <em>can</em> do so much more these days, we often just reflexly do our utmost to save lives – that’s what doctors are trained to do. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/5714/original/4212003468_eb7999448a_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/5714/original/4212003468_eb7999448a_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5714/original/4212003468_eb7999448a_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5714/original/4212003468_eb7999448a_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5714/original/4212003468_eb7999448a_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5714/original/4212003468_eb7999448a_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5714/original/4212003468_eb7999448a_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Michael Coté</span></span>
</figcaption>
</figure>
<p>Compounding the problem of futile care at the natural end of life is the fact that doctors, as a rule, don’t feel comfortable talking about death and dying. So small, incremental treatments are delivered, even in the face of almost certain futility. </p>
<p>Maybe it’s being “almost certain” that’s the issue, but it’s hard to be ever completely certain in medicine. And so patients are transferred to ICU, put on life support machines and more incremental therapies follow, with everyone hoping for a miracle. </p>
<p>Eventually, it becomes obvious the patient won’t survive despite all the machines. Discussions with families begin, usually a consensus is reached and treatment is withdrawn. The patient is finally allowed to die in peace.</p>
<p>Around 70% of Australians would like to die at home but over half will eventually die undignified and painful deaths in hospitals.</p>
<h2>Reality and expectations</h2>
<p>Intensive care specialists have had to be increasingly involved in the dying process. It wasn’t what attracted most of us to the specialty. We still gain a lot of our professional satisfaction from saving lives. </p>
<p>But we also have a responsibility to engage our colleagues and society in discussions about unrealistic expectations of what modern medicine can, and more importantly, cannot achieve.</p>
<p>Hardly a day goes by without reports in the media about the latest miracle drug or procedure. Most television dramas emphasise great diagnosticians and cures against all odds. </p>
<p>One study showed that most patients who have a cardiac arrest in hospital television dramas live. But the reality is that most die and resuscitation shouldn’t have even commenced. </p>
<p>In response, we can open up discussions by being honest about the limitations of modern medicine. These discussions may lead to greater acceptance of dying and death.</p>
<p>There also has to be a different emphasis in health professional education. Obviously, successfully treating disease is the major goal of medical and nursing education. But managing the dying process is an important part of that goal. </p>
<p>When people with a terminal illness are asked what they think is important, they identify adequate pain and symptom relief; avoiding inappropriate prolongation of dying; achieving a sense of control; avoiding being a burden; and strengthening relationships with their loved ones. </p>
<h2>A different approach</h2>
<p>An important part of a different approach to end of life care is to provide alternatives to hospital admission. </p>
<p>I recently visited my sister-in-law, Denise, who lives in Oregon. She’s in the terminal stages of motor neurone disease: a cruel condition where muscles gradually become paralysed until the diaphragm becomes involved and you can no longer breathe. </p>
<p>All of this occurs without any involvement of the brain, so the patient is totally aware of the increasing weakness and dependence on others for most functions.</p>
<p>As part of medical care in the United States, you can opt for what is known as hospice care. The word hospice refers to a program, not a site of care. The government-funded Medicare program covers all costs. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/5713/original/4544969641_5dc313f568_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/5713/original/4544969641_5dc313f568_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=452&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5713/original/4544969641_5dc313f568_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=452&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5713/original/4544969641_5dc313f568_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=452&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5713/original/4544969641_5dc313f568_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=568&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5713/original/4544969641_5dc313f568_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=568&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5713/original/4544969641_5dc313f568_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=568&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">James Walsh</span></span>
</figcaption>
</figure>
<p>The catch is that you must forgo any options for active treatment of the terminal disease, such as chemotherapy. That’s fine for Denise because there’s no specific treatment for the disease and she doesn’t want to spend the last few weeks or months of her life with a tracheostomy and on a ventilator.</p>
<p>The health system in the United States is far from perfect, being the most expensive and low on the list of measured health outcomes. But the hospice care that Denise is now receiving must be one of the more appropriate ways of managing people at the end of their life. </p>
<p>She remains under the care of her general practitioner. Since her wish is to remain at home, a palliative care nurse co-ordinates care and is on call and available 24 hours a day. A social worker, physiotherapist, occupational therapist initially assessed her and now visit as needed. </p>
<p>Someone comes three times a week to bathe her and provide about four hours of respite from care for her husband, Paul. Denise can be admitted to the local hospital for five days of care if Paul needs more respite. There’s no limit on how many times this can occur. </p>
<p>A masseur and music therapist are also available. As are drugs for the relief of pain and other distressing symptoms. The co-ordinating nurse gives comprehensive instructions on their use to both Denise and Paul.</p>
<h2>A happier ending?</h2>
<p>An interesting finding from one study showed that hospice care combined with the option for active treatment resulted in greater survival and less suffering than for active management alone. The conclusion was, that given the choice, many will opt for hospice care rather than the often cruel and futile use of options such as more chemotherapy.</p>
<p>Almost half of the cost of health care is spent in the last six months of life. This is a huge and increasing burden for our ageing society.</p>
<p>I spent a week with Denise and met the team that cared for her. As a practising intensivist, I had the privilege of seeing a system that was co-ordinated and centred around the patient’s wishes. </p>
<p>The state of Oregon also respects the right of patients to not be resuscitated or transported to hospital by an ambulance. She has the document on her at all times and a copy fixed by a magnet on the refrigerator.</p>
<p>Currently, in Australia many people are transported to hospital because there is little in the way of comprehensive and co-ordinated community-based care at the end of life. </p>
<p>So it seems that improved care for the terminally ill would be of great benefit to society, both in terms of less suffering and cost savings – a win-win situation as they say.</p>
<p><strong>This is the second part of <a href="https://theconversation.com/topics/talking-about-death-and-dying">Talking about death and dying</a>. To read the other instalments, click on the links below:</strong></p>
<p><strong>Part One: <a href="http://theconversation.com/deadly-censorship-games-keeping-a-tight-lid-on-the-euthanasia-debate-2549">Deadly censorship games: keeping a tight lid on the euthanasia debate</a></strong></p>
<p><strong>Part Three: <a href="http://theconversation.com/caring-or-curing-the-importance-of-being-honest-4325">Caring or curing: the importance of being honest</a></strong></p>
<p><strong>Part Four: <a href="http://theconversation.com/death-and-despair-or-peace-and-contentment-why-families-need-to-talk-about-end-of-life-options-4311">Death and despair or peace and contentment: why families need to talk about end-fo-life options</a></strong> </p>
<p><strong>Part Five: <a href="http://theconversation.com/body-or-soul-why-we-dont-talk-about-death-and-dying-4354">Body or soul: why we don’t talk about death and dying</a></strong></p>
<p><strong>Part Six: <a href="http://theconversation.com/planning-your-endgame-advance-care-directives-4250">Planning your endgame: Advance Care Directives</a></strong></p>
<p><strong>Part Seven: <a href="http://theconversation.com/a-challenge-to-our-leaders-why-dont-we-legalise-euthanasia-4463">A challenge to our leaders – why don’t we legalise euthanasia?</a></strong></p>
<p><strong>Part Eight: <a href="http://theconversation.com/a-personal-account-of-life-with-terminal-cancer-4475">A personal account of life with terminal cancer</a></strong></p><img src="https://counter.theconversation.com/content/249/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kenneth Hillman does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
TALKING ABOUT DEATH AND DYING - Why is it we don’t talk about the greatest inevitability in our lives? Why don’t we talk about death and dying? Today we hear from a professor of intensive care, who looks…
Kenneth Hillman, Professor of Intensive Care, UNSW Sydney
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/2549
2011-11-20T19:39:16Z
2011-11-20T19:39:16Z
Deadly censorship games: keeping a tight lid on the euthanasia debate
<figure><img src="https://images.theconversation.com/files/5675/original/424548571_55087c8ce1_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Australian government vigorously censors information about peaceful ways of dying even though we have access to violent means of ending life.</span> <span class="attribution"><span class="source">Alex @ Faraway</span></span></figcaption></figure><p><strong><em><a href="https://theconversation.com/topics/talking-about-death-and-dying">TALKING ABOUT DEATH AND DYING</a></em> - Why don’t we talk about death and dying? We can choose so many of our life experiences, but it seems we can have no say in whether we die in pain or at peace. Today we look at the Australian government’s efforts to suppress discussion of euthanasia.</strong></p>
<p>There’s plenty of information available on how to kill yourself violently, so why does the Australian government so vigorously censor information on peaceful methods?</p>
<p>Voluntary euthanasia societies have long been pushing to legalise death with dignity. According to opinion polls, <a href="http://www.theaustralian.com.au/news/breaking-news/per-cent-support-voluntary-euthanasia-poll/story-fn3dxiwe-1225791455181">a strong majority of Australians support legalisation</a>, yet Australian governments have been unreceptive. When the Northern Territory government legalised euthanasia in 1996, the federal parliament overruled the law less than a year later. </p>
<p>Philip Nitschke, <a href="http://books.google.com/books/about/Killing_me_softly.html?id=iKs1AAAACAAJ">despairing of the legal route</a>, set up <a href="http://www.exitinternational.net/">Exit International</a> to enable people to learn how to obtain a peaceful death through their own initiative. <a href="http://www.peacefulpillhandbook.com/">Exit publications </a> provide information about obtaining pentobarbital, commonly known as Nembutal, the drug of choice everywhere that death with dignity is legal.</p>
<h2>Censorship and response</h2>
<p>The Australian government has responded with amazingly draconian censorship. No other government has taken such extreme measures to prevent access to information on peaceful death.</p>
<p>Exit had an information phone line. The government <a href="http://www.comlaw.gov.au/Details/C2005A00092">passed a law </a> making it illegal to convey information over the telephone about ending one’s life. Exit responded by putting its phone line in New Zealand. </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/5674/original/24397480_95340cdad2_z_1_.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5674/original/24397480_95340cdad2_z_1_.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=449&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5674/original/24397480_95340cdad2_z_1_.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=449&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5674/original/24397480_95340cdad2_z_1_.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=449&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5674/original/24397480_95340cdad2_z_1_.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=564&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5674/original/24397480_95340cdad2_z_1_.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=564&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5674/original/24397480_95340cdad2_z_1_.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=564&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">hagit_</span></span>
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</figure>
<p>Exit has a website. The government banned Australian Internet service providers hosting websites with end-of-life information. Exit <a href="http://www.exitinternational.net/">hosted its website overseas</a>. </p>
<p>For some years, the government has been pushing for a web filter, ostensibly to block material on paedophilia and violent pornography. The government kept secret its list of websites to be blocked but the list was revealed on WikiLeaks - and it contained euthanasia websites. Exit responded by providing information about using proxy servers to get around the filter.</p>
<p>Philip Nitschke and Fiona Stewart wrote a book, <a href="http://www.peacefulpillhandbook.com/">The Peaceful Pill Handbook</a>, with detailed information about peaceful ways to end your life. The book is freely available in most of the world, but the Australian government banned it. This was only the third book banned in Australia in a third of a century. Exit makes it easy to obtain the book, in hard copy or electronic form, from its websites.</p>
<p>Exit produced a short advertisement with the mild message that being able to choose how to die might be a good idea. Prior to filming, it was approved by the regulatory body Commercials Advice. </p>
<p>Afterwards, just before screening, Commercials Advice withdrew its approval. Exit <a href="http://www.youtube.com/watch?v=qRDZFwlWU1s">put it on YouTube</a>, where it was free to view, and some Australian media ran the story of how it had been censored:</p>
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<p>Exit has also encountered legal threats, last-minute refusals to use hired venues and attempts to block its billboard advertisements.</p>
<p>Many people are keen to obtain the information provided by Exit. Nearly all of those who attend Exit’s meetings are old - the minimum age to attend the members-only segments is 50. Some are seriously ill. They are looking for information on how they can end their lives peacefully, when pain, indignity and suffering become too great. The government is doing its utmost to prevent this.</p>
<h2>Violent death</h2>
<p>However, the government seems quite complacent about the availability of information about killing yourself violently. </p>
<p>Licensed handguns are legal in Australia, and you can take a course in how to use them. Shooting is one of the common ways men commit suicide. There are plenty of films and television shows with graphic portrayals of suicide by firearm. </p>
<p>The most common <a href="http://www.health.gov.au/internet/main/publishing.nsf/Content/F5B8C66A112B4165CA2571EA00212A8A/$File/agemeth.pdf">method for suicide in Australia</a> is hanging. The technology - rope and something to tie it to - is readily available. Again, there are many media portrayals. For example, The Shawshank Redemption, <a href="http://www.imdb.com/chart/top">a film rated very highly by audiences</a>, includes an informative sequence of suicide by hanging.</p>
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<img alt="" src="https://images.theconversation.com/files/5677/original/90749538_9773535401_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5677/original/90749538_9773535401_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5677/original/90749538_9773535401_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5677/original/90749538_9773535401_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5677/original/90749538_9773535401_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5677/original/90749538_9773535401_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5677/original/90749538_9773535401_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="attribution"><span class="source">le Liz/Flickr</span></span>
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<p>It does not require much imagination to figure out how to kill yourself by jumping off a building, drowning or crashing a car, or you can look up suicide methods on Wikipedia. Shooting, hanging and other violent methods are not nice ways to die. They are unreliable: you might survive and end up permanently disabled. They are painful, often agonising. And they are highly distressing for family and friends. </p>
<p>The government is trying to prevent people suffering from terminal illnesses from finding out how to die peacefully. The result is that many of them choose violent methods instead, such as hanging. Yet the government is doing little or nothing to prevent access to information about violent suicide options.</p>
<h2>Rationales</h2>
<p>It might be argued that the government can’t prevent access to information about means for violent death – that would be censorship. But of course it has shown itself quite willing to censor information about methods for peaceful death.</p>
<p>Another argument is that people shouldn’t be able to choose a peaceful death, because that would make it too attractive. The evidence shows, on the contrary, that having the means to die peacefully frequently <a href="http://www.amazon.com/Good-Death-Argument-Voluntary-Euthanasia/dp/tags-on-product/0522855032">enables people to live longer</a>. </p>
<p>Nor is there much risk of accidentally dying with the means described by Exit. Nembutal is extremely bitter, so no one is going to swig down a bottle by mistake. Another option, <a href="http://www.peacefulpillhandbook.com/">making an exit bag</a>, requires considerable advanced planning and preparation. It is not a spur-of-the-moment suicide option.</p>
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<img alt="" src="https://images.theconversation.com/files/5676/original/4426523315_4bc4522e96_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/5676/original/4426523315_4bc4522e96_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/5676/original/4426523315_4bc4522e96_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/5676/original/4426523315_4bc4522e96_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/5676/original/4426523315_4bc4522e96_b.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/5676/original/4426523315_4bc4522e96_b.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/5676/original/4426523315_4bc4522e96_b.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=504&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<p>The standard explanation is that the government is pandering to the religious lobby, which apparently is more concerned about stopping dying with dignity than stopping violent suicides.</p>
<p>The irony is that while physician-assisted suicide remains illegal, there is increased interest in Exit’s approach. So far, Exit has <a href="http://www.bmartin.cc/pubs/10bsts.html">found a way around every censorship technique</a> introduced by the government. </p>
<p>In some cases, the censorship has simply created more visibility for and interest in Exit’s activities. The government seems to have accomplished an unlikely double: appeasing the religious lobby while stimulating the development of ever better information and technology for do-it-yourself death with dignity.</p>
<p><strong>Acknowledgements</strong>: I thank Paula Arvela, Trent Brown, Rae Campbell, Philip Nitschke, Russel Ogden and Fiona Stewart for helpful comments.</p>
<p><strong><em>What do you think of the government’s actions in relation to Exit International? Leave your comments below</em></strong></p>
<p><strong>This is the first part of <a href="https://theconversation.com/topics/talking-about-death-and-dying">Talking about death and dying</a>. To read the other instalments, click on the links below:</strong></p>
<p><strong>Part Two: <a href="http://theconversation.com/end-of-the-care-conveyor-belt-death-in-intensive-care-units-249">End of the care conveyor belt: death in intensive are units</a></strong></p>
<p><strong>Part Three: <a href="http://theconversation.com/caring-or-curing-the-importance-of-being-honest-4325">Caring or curing: the importance of being honest</a></strong></p>
<p><strong>Part Four: <a href="http://theconversation.com/death-and-despair-or-peace-and-contentment-why-families-need-to-talk-about-end-of-life-options-4311">Death and despair or peace and contentment: why families need to talk about end-fo-life options</a></strong> </p>
<p><strong>Part Five: <a href="http://theconversation.com/body-or-soul-why-we-dont-talk-about-death-and-dying-4354">Body or soul: why we don’t talk about death and dying</a></strong></p>
<p><strong>Part Six: <a href="http://theconversation.com/planning-your-endgame-advance-care-directives-4250">Planning your endgame: Advance Care Directives</a></strong></p>
<p><strong>Part Seven: <a href="http://theconversation.com/a-challenge-to-our-leaders-why-dont-we-legalise-euthanasia-4463">A challenge to our leaders – why don’t we legalise euthanasia?</a></strong></p>
<p><strong>Part Eight: <a href="http://theconversation.com/a-personal-account-of-life-with-terminal-cancer-4475">A personal account of life with terminal cancer</a></strong></p><img src="https://counter.theconversation.com/content/2549/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Brian Martin joined Exit International in order to be able to attend members-only workshops.</span></em></p>
TALKING ABOUT DEATH AND DYING - Why don’t we talk about death and dying? We can choose so many of our life experiences, but it seems we can have no say in whether we die in pain or at peace. Today we look…
Brian Martin, Professor of Social Sciences, University of Wollongong
Licensed as Creative Commons – attribution, no derivatives.