tag:theconversation.com,2011:/fr/topics/death-and-dying-9850/articles
Death and dying – The Conversation
2023-11-05T13:01:56Z
tag:theconversation.com,2011:article/210450
2023-11-05T13:01:56Z
2023-11-05T13:01:56Z
As a death doula and professor who teaches about dying, I see a need for more conversations about death
<figure><img src="https://images.theconversation.com/files/556950/original/file-20231031-27-knk923.jpg?ixlib=rb-1.1.0&rect=0%2C216%2C5485%2C3587&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Students in a death and dying class have the opportunity to become a ‘death ambassador,’ in recognition of their new level of awareness that could help foster healthy conversations about death and dying. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/as-a-death-doula-and-professor-who-teaches-about-dying-i-see-a-need-for-more-conversations-about-death" width="100%" height="400"></iframe>
<p>A growing number of folks may have heard of the <a href="https://www.orderofthegooddeath.com/death-positive-movement/">death-positive movement</a>, <a href="https://deathcafe.com/what/">death cafés</a> or <a href="https://theconversation.com/death-friendly-communities-ease-fear-of-aging-and-dying-157655">death-friendly communities</a> — each of which are animated by the understanding that welcoming our own mortality could improve the quality of our lives.</p>
<p>There is truth to these claims. Both as a person who has taught courses on death, dying, and spirituality for more than 20 years, and <a href="https://endoflifedoulaassociation.org">as a death doula</a>, thinking about dying and working closely with the dying <a href="https://www.wiley.com/en-us/Staring+at+the+Sun%3A+Overcoming+the+Terror+of+Death-p-9780470894019">has fostered in me a deep appreciation for what it means to live well and meaningfully</a>.</p>
<p>However, my university students have often told a different story. Both informally in class discussions, <a href="https://www.youtube.com/watch?v=aMWff7NLm5k">and also in a public presentation</a> about why death education matters, for the online <a href="https://twitter.com/Liftingthelid21">Lifting The Lid International Festival of Death and Dying</a>, many have expressed how their learning with me signals their first times talking about death.</p>
<p>When I hear this, I am aware of how our society needs to do a better job at nurturing more conversations about death, and building communities that support people navigating questions surrounding death and dying.</p>
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<figcaption><span class="caption">Students speak about why death education matters to them.</span></figcaption>
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<h2>Denying death</h2>
<p>The easiest way to exile death from our conversations is to label it “morbid,” ensuring we never need speak of it.</p>
<p>My first lecture in every death class begins with a discussion of the pervasiveness <a href="https://www.simonandschuster.com/books/The-Denial-of-Death/Ernest-Becker/9780684832401">of death denial in dominant modern western culture</a>. </p>
<p>I ask my students: “How do people react when you tell them you’re taking a course on death?” Invariably they have heard things like: </p>
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<p>“That’s so morbid!” </p>
<p>“How depressing/dark/strange/weird!”</p>
<p>“Why would you want to study that!?”</p>
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<p>My courses are designed to introduce students to the study of death through history, culture, religion and spirituality, ritual, literature, ethics <a href="https://www.routledge.com/Handbook-of-Social-Justice-in-Loss-and-Grief-Exploring-Diversity-Equity/Harris-Bordere/p/book/9781138949935#">and social justice</a> </p>
<p>We explore social and cultural barriers affecting how services are structured and the <a href="https://pubmed.ncbi.nlm.nih.gov/27608146">implications for end-of-life care</a>. For example, <a href="https://wexnermedical.osu.edu/blog/racism-is-a-social-determinant-of-health">racism and inequities in health care</a> and other institutions contributes to dangerous disparities in treatment and life outcomes, influencing Black, Indigenous and racialized communities’ <a href="https://apnews.com/article/general-news-health-lifestyle-5b111827cc16cb38b7ae63018c8b3727">collective trauma surrounding</a> dying and death.</p>
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Read more:
<a href="https://theconversation.com/as-an-indigenous-doctor-i-see-the-legacy-of-residential-schools-and-ongoing-racism-in-todays-health-care-162048">As an Indigenous doctor, I see the legacy of residential schools and ongoing racism in today's health care</a>
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<p>Students read and learn about how humans have understood and interpreted death, as well as some of the pressing social issues that we face in contemporary <a href="https://doi.org/10.1089/jpm.2020.0435">death care and practices</a>. </p>
<p>Inspired by the work of <a href="https://www.instagram.com/naheedd">Dr. Naheed Dosani</a>, palliative care physician and health justice activist, I now include a class on palliative care for people experiencing <a href="https://doi.org/10.12927/hcq.2023.27055">homelessness and dying in the streets</a>. </p>
<p><a href="https://www.dyingwithdignity.ca/blog/reclaiming-cultural-teachings-about-mortality-grief-loss-death-and-dying/">Anishinaabe death doula Chrystal Toop, a Member of Pikwàkanagàn First Nation</a>, also visits my class to speak about compounded trauma of death and collective grief experienced by Indigenous Peoples, and why she created her own Indigenous death doula training to reclaim cultural teachings.</p>
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<figcaption><span class="caption">‘What’s a life worth?’ Ted talk from Dr. Naheed Dosani.</span></figcaption>
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<p>I also bring what I have learned as an end-of-life companion from hours <a href="https://www.theguardian.com/lifeandstyle/2019/nov/06/end-of-life-doulas-the-professionals-who-help-you-die">sitting with and listening to people who are facing their own death or</a> the death of those they love. </p>
<p>The gentle skills learned there are discernment, attention and compassion. As students reflect on what they will take with them from the course, they perceive the value in this kind of experience I bring to the classroom as much as in an article <a href="https://doi.org/10.3138/cbmh.31.2.205">on palliative care and its history</a>.</p>
<h2>Negative consequences of denying death</h2>
<p>My courses on dying and death have always drawn students from other humanities programs like English, fine arts and history. But over the years, more students from the professional programs, such as nursing, criminal justice and social work are enrolling. </p>
<p>While students’ professional programs — for example, in nursing or social work — seek to address various topics surrounding aging, trauma, death or end-of-life care in varying ways, students also need opportunities to think about their own mortality and, to cultivate some self-awareness in order to be present for others experiencing death and dying. </p>
<p>Some of my nursing students raise questions like: How do they talk to the loved ones of patients who are dying? What should they say? </p>
<p>These questions are hard enough when death is expected. They are exceptionally difficult when it isn’t, when the death is of a young person, a child or a baby. </p>
<h2>New level of awareness</h2>
<p>Students also express their disappointment and confusion because what they face in the aftermath of death and loss is often isolation and solitude.</p>
<p>While <a href="https://www.cfp.ca/content/54/12/1693">research about how to support children and young people navigating death</a> amplifies the need for open and sensitive discussion, some students, especially white, middle-class students, speak of experiences of having been shielded from death by those who thought shielding them was the best way to protect them from fear and anxiety.</p>
<p>Simply providing the safe space to begin to have these conversations goes a very long way towards assuaging their fear and grief.</p>
<p>In part this is because supporting the passage of life to death, and supporting grief, is (or should be) <a href="https://doi.org/10.1177/26323524221102468">a collective experience</a>. </p>
<p><a href="https://www.talkdeath.com/learn-from-collective-mourning-tragedy">Community death care is everyone’s business</a>, and while awareness of our own mortality is an important part of that, awareness and activism around racism, violence and injustice in end-of-life care is essential.</p>
<h2>Death ambassadors</h2>
<p>Figures like <a href="https://www.instagram.com/naheedd">Dosani are</a> making social media outreach part of their teaching and care practices. In recognition of the importance of creating death supportive communities, I also started an Instagram account, <a href="https://www.instagram.com/death.ambassadors">@death.ambassadors</a>, to chronicle my death teaching.</p>
<p>At the end of each death course, I offer students the opportunity <a href="https://www.nipissingu.ca/research/centres/death-ambassadors">to be a “death ambassador,” in recognition of their new level of death awareness</a> that could help to foster healthy conversations about death and dying in our culture.</p>
<p>Some of my students have also created their own death-awareness <a href="https://www.theatlantic.com/health/archive/2013/08/how-social-media-is-changing-the-way-we-approach-death/278836">social media accounts</a>, and found themselves supported by a death-positive community of educators, end-of-life companions, funeral directors and death doulas.</p>
<p>It is a universal truth that one day we are all going to die and that means we all have a serious stake in death education. </p>
<p>When it’s your turn, or the turn of someone you love, don’t we all need people who have considered how to support us in navigating dying and death? Let’s do the work to make that a reality for everyone.</p><img src="https://counter.theconversation.com/content/210450/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Susan Srigley is a palliative care volunteer with the Near North Palliative Care Network.</span></em></p>
All of us face loss and the reality of our own mortality. Whether through in-person discussion or over social media, let’s build communities that support people navigating death and dying.
Susan Srigley, Professor of Religions and Cultures, Death Doula & Death Educator, Nipissing University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/205488
2023-08-04T01:39:15Z
2023-08-04T01:39:15Z
What actually is palliative care? And how is it different to end-of-life care?
<figure><img src="https://images.theconversation.com/files/537997/original/file-20230718-29-oqxycp.jpg?ixlib=rb-1.1.0&rect=27%2C18%2C6011%2C3983&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hand-young-women-on-wheelchair-senior-2087350534">Shutterstock</a></span></figcaption></figure><p>Although it is associated with dying, palliative care is an approach focused on improving <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6405258/#:%7E:text=QOL%20can%20also%20be%20defined,QOL%20(2%E2%80%934).">quality of life</a> – or how people feel about and respond to facing a life-threatening illness. </p>
<p>Palliative care aims to prevent and relieve physical, social, emotional, spiritual and existential distress. Palliative care also supports family caregivers during the disease journey and bereavement phase. You might have heard it mentioned for cancer, but it is beneficial for the majority of life-limiting conditions. It has been shown to reduce health-care costs by <a href="https://palliativecare.org.au/publication/kpmg-palliativecare-economic-report/">preventing</a> unnecessary hospital admissions.</p>
<p>Palliative care is not voluntary assisted dying. It does not aim to hasten or prolong death. It is not just for people who are about to die and seeking palliative care does not mean “giving up”. In fact, it can be a profound and positive form of care that the World Health Organization (WHO) has <a href="https://www.who.int/news-room/fact-sheets/detail/palliative-care">recognised</a> as a basic human right. But what does it involve?</p>
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Read more:
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<h2>Not just for someone’s final days</h2>
<p>Palliative care is often seen as a “last resort” rather than a service that empowers terminally ill people to live as well as possible for as long as possible. </p>
<p>The full benefit of this holistic approach can only be realised if people are referred early to <a href="https://palliativecare.org.au/resource/what-is-palliative-care/">palliative care</a> – ideally from the time they are diagnosed with a terminal illness. Unfortunately, this rarely happens and palliative care tends to blur with <a href="https://www.nia.nih.gov/health/providing-comfort-end-life">end-of-life care</a>. The latter is for people who are likely to die within 12 months but is often left to the last few weeks.</p>
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<figcaption><span class="caption">Palliative is not just for the very end of someone’s life.</span></figcaption>
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Read more:
<a href="https://theconversation.com/we-all-hope-for-a-good-death-but-many-aged-care-residents-are-denied-proper-end-of-life-care-156105">We all hope for a 'good death'. But many aged-care residents are denied proper end-of-life care</a>
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<h2>Palliative care can involve difficult conversations</h2>
<p>Palliative care provides a time to ask some usually taboo questions. What kind of death do you want to experience? Who is in your personal network? How will they respond to your life ending? What kind of support can they offer?</p>
<p>Palliative care can be provided at home, hospital, hospice or residential aged care facility, depending on the preference and circumstances of patients and their family carers. </p>
<p>In general, patients are referred by their treating specialist, health professional or GP. Patient preferences for care and what matters most to them are discussed with their doctor or other health professionals and with their loved ones with <a href="https://www.advancecareplanning.org.au/">advance care planning</a>. These discussions can include information on their preferred place of care, preferred place of death, personal care needs such as dietary preferences and religious and spiritual practices. </p>
<p>This helps those caring to make decisions about the patient care when the patient cannot anymore. However, advance care planning can start at any time in life and without a diagnosis.</p>
<h2>How palliative care delivery has changed</h2>
<p>Once upon a time, we were born at home and we died at home. Death was a social event with a medical component. Now it is close to the opposite. But research indicates a solely clinical model of palliative care (mainly symptom management funded through the health system) is <a href="https://www.mdpi.com/2227-9032/9/12/1615">inadequate</a> to address the complex aspects of death, dying, loss and grief.</p>
<p>A <a href="https://www.phpci.org/">public health</a> palliative care approach views the community as an equal partner in the long and complex task of providing quality health care at the end of someone’s life. It promotes conversations about patients’ and families’ goals of care, what matters to them, their needs and wishes, minimising barriers to a “good death”, and supporting the family post-bereavement. </p>
<p>These outcomes require the involvement of family carers, friendship networks and not-for-profit organisations, where more detailed conversations about life and death can happen, instead of the “pressure cooker” rushed environment of hospitals and clinics. Investment could develop stronger <a href="https://pubmed.ncbi.nlm.nih.gov/29402101/">death literacy</a> and grief literacy in the community and among health professionals, who may be <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6312518/#:%7E:text=Some%20struggle%20with%20the%20limitations,lead%20in%20opening%20a%20dialogue">reluctant</a> to raise or discuss these topics. This would likely see the take up of advance care planning increase, from the current low levels of <a href="https://www1.racgp.org.au/newsgp/clinical/advance-care-planning-in-an-ageing-population#:%7E:text=A%20paper%20exploring%20the%20cognitive,advance%20health%20directive%20in%20place.">less than 15%</a> of Australians (<a href="https://theconversation.com/only-25-of-older-australians-have-an-advance-care-plan-coronavirus-makes-it-even-more-important-144354">25% of older Australians</a> accessing health and aged-care facilities).</p>
<p>One such successful approach is the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9720808/">Compassionate Communities Connectors Program</a> in Western Australia, using trained <a href="https://comcomnetworksw.com/compassionate-connectors-program/">community volunteers</a> to enhance the social networks of terminally ill people. </p>
<p>Our research trial trained 20 community volunteers (“connectors”) and 43 patients participated over 18 months. In sourcing others to help (who we called “caring helpers”), connectors built the capacity of the community and social networks around patients in need. Caring helpers assisted with transport, collecting prescriptions, organising meals and linked clients to community activities (such as choirs, walking groups, men’s shed). And they helped complete advance care planning documentation. About 80% of patients’ needs were social, particularly around reducing feelings of isolation.</p>
<p>Patients in the trial had fewer hospital admissions and shorter hospital stays.</p>
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Read more:
<a href="https://theconversation.com/passed-away-kicked-the-bucket-pushing-up-daisies-the-many-ways-we-dont-talk-about-death-77085">Passed away, kicked the bucket, pushing up daisies – the many ways we don't talk about death</a>
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<h2>Tailored to need</h2>
<p>Palliative care should be tailored to each person, rather than a one-size-fits-all clinical model that doesn’t respect autonomy and choice. </p>
<p>Many people are dying in a way and a place that is not reflective of their values and their end-of-life is interrupted with preventable and costly admissions to hospital where control and even dignity are surrendered. Palliative care hospitalisations have <a href="https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia/contents/summary">increased</a> in recent years compared to all hospitalisations, with 65% of such admissions ending with the patient dying in hospital.</p>
<p>It is unrealistic and unaffordable to have a palliative care service in every suburb. There needs to be a shift to a more comprehensive, inclusive and sustainable approach, such as Compassionate Communities, that recognises death, dying, grief and loss are everyone’s business and responsibility.</p><img src="https://counter.theconversation.com/content/205488/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Samar Aoun is voluntary chair of the South West Compassionate Communities Network, chair of the MND Association in WA and national chair of MND Australia.</span></em></p>
Palliative care is often seen as a ‘last resort’ rather than a service that empowers terminally ill people to live as well as possible for as long as possible.
Samar Aoun, Perron Institute Research Chair in Palliative Care, The University of Western Australia
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/191245
2022-10-24T20:00:49Z
2022-10-24T20:00:49Z
Reflection Room: Exploring pandemic-related grief in long-term care homes
<figure><img src="https://images.theconversation.com/files/491450/original/file-20221024-6634-l5un5d.jpg?ixlib=rb-1.1.0&rect=181%2C502%2C5341%2C3873&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Reflection Rooms are evidence-based, participatory art installations that help people express emotions about death and dying.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/reflection-room--exploring-pandemic-related-grief-in-long-term-care-homes" width="100%" height="400"></iframe>
<p>The COVID-19 pandemic created a tremendous amount of <a href="https://doi.org/10.1177/26323524221092456">collective loss and grieving</a> that requires care and support. This was as true in residential long-term care (LTC) homes, which continue to experience <a href="https://www.cbc.ca/news/canada/toronto/seventh-wave-outbreaks-long-term-care-1.6514707">pandemic-related challenges</a>, as in <a href="https://doi.org/10.1186/s12995-022-00352-4">hospitals</a> and among the <a href="https://www.canada.ca/en/public-health/services/reports-publications/health-promotion-chronic-disease-prevention-canada-research-policy-practice/vol-42-no-5-2022/self-rated-mental-health-community-belonging-life-satisfaction-perceived-change-mental-health-adults-covid-19-pandemic-canada.html">general public</a>. </p>
<p>Through the Reflection Room project, our interdisciplinary team of researchers is partnering with LTC homes in Ontario to create physical spaces to pause, reflect, connect and process grief. </p>
<p>Many LTC home communities were <a href="https://doi.org/10.1080/17482631.2022.2075532">seriously affected by COVID-19</a>. On top of the stress from <a href="https://data.ontario.ca/en/dataset/long-term-care-home-covid-19-data/resource/4b64488a-0523-4ebb-811a-fac2f07e6d59">COVID-19 infections and deaths</a>, staff have experienced <a href="https://doi.org/10.1016/j.ajic.2021.03.006">burnout and low morale</a>, and some homes with <a href="https://www.ontario.ca/page/covid-19-guidance-document-long-term-care-homes-ontario?_ga=2.171566758.786944958.1664389787-699570453.1664389787#section-14">outbreaks</a> must continue to restrict residents’ movements, isolate residents in their rooms and limit activities such as social functions to reduce risk of spread. </p>
<p>Many people within these communities have reflected on the <a href="https://doi.org/10.1080/17482631.2022.2075532">trauma</a> the pandemic has caused. <a href="https://www.ontario.ca/page/long-term-care-covid-19-commission-progress-interim-recommendations">Ontario’s Long-Term Care COVID-19 Commission Final Report</a> has recommended reforms and counselling services. However, with the immense levels of <a href="https://doi.org/10.1080/15524256.2021.1881692">grief</a>, and <a href="https://doi.org/10.1177/00302228221107979">feelings</a> of helplessness, regret and sadness, there is also a need for innovative and timely support for LTC communities. </p>
<h2>Reflection Rooms</h2>
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<a href="https://images.theconversation.com/files/488377/original/file-20221005-16-ym59a3.png?ixlib=rb-1.1.0&rect=22%2C0%2C1137%2C1052&q=45&auto=format&w=1000&fit=clip"><img alt="A white card with 'My reflection' printed in red at the top, and a handwritten note reading 'I can't help but wonder...how long until the fatigue catches up to us? I feels like one wave after another.'" src="https://images.theconversation.com/files/488377/original/file-20221005-16-ym59a3.png?ixlib=rb-1.1.0&rect=22%2C0%2C1137%2C1052&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/488377/original/file-20221005-16-ym59a3.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=845&fit=crop&dpr=1 600w, https://images.theconversation.com/files/488377/original/file-20221005-16-ym59a3.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=845&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/488377/original/file-20221005-16-ym59a3.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=845&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/488377/original/file-20221005-16-ym59a3.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1062&fit=crop&dpr=1 754w, https://images.theconversation.com/files/488377/original/file-20221005-16-ym59a3.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1062&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/488377/original/file-20221005-16-ym59a3.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1062&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">A reflection card written by a visitor to a Reflection Room.</span>
<span class="attribution"><span class="source">(SE Research Centre)</span>, <span class="license">Author provided</span></span>
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<p>Reflection Rooms are evidence-based, participatory art installations created in 2016 by the <a href="https://research.sehc.com/">SE Research Centre</a>, led by Paul Holyoke from the Centre and Barry Stephenson from Memorial University of Newfoundland. The goal of the project is to support people in community and health-care settings to talk about dying and death by providing an immersive space for visitors to read stories written by others and write and share their own stories. </p>
<p>A forthcoming research study evaluated the impact of 62 Reflection Room installations across Canada from 2016-20. We found the installations created space for expressing emotions such as love and regret, and making sense of experiences related to dying and death. </p>
<p>This included making meaning of the mystery of mortality, dying and death, and feeling that connections with memories or with what participants called the spirit can continue after physical death. </p>
<h2>Adaptation during the pandemic</h2>
<p>During the pandemic, <a href="https://vimeo.com/644005228?embedded=true&source=vimeo_logo&owner=57540768">the Reflection Room project was adapted</a> to address experiences of loss and grief in LTC homes in Ontario. In this evolution of the project, LTC homes are provided with an easy-to-set-up kit incorporating instructions and materials at no cost. These materials include elements such as reflection cards, a red curtain to display the cards, and candles. The kit ensures each LTC home can adapt the Reflection Room to the space available, creating opportunities for quiet and reflection. Reflection Rooms have been installed in 27 LTC homes across Ontario.</p>
<figure class="align-center ">
<img alt="A young woman in scrubs sitting with an older woman, holding her hand." src="https://images.theconversation.com/files/491110/original/file-20221021-26-n0u7oa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/491110/original/file-20221021-26-n0u7oa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/491110/original/file-20221021-26-n0u7oa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/491110/original/file-20221021-26-n0u7oa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/491110/original/file-20221021-26-n0u7oa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/491110/original/file-20221021-26-n0u7oa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/491110/original/file-20221021-26-n0u7oa.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">Reflection Room visitors included long-term care staff, residents and caregivers, all of whom were affected by grief in the context of COVID-19.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Based on 68 surveys completed by Reflection Room visitors — including LTC staff, residents and caregivers — we believe these installations offer an opportunity to work through grief in the context of COVID-19. </p>
<p>Reflection Rooms provide a setting where people can look inward in a helpful way, experience calm and peace, and develop a sense of connection and compassion for others. These elements – finding a calm place, reflecting, writing and allowing emotions to arise — are all part of grief work, according to <a href="https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Emotional+Health/Grief+Work.aspx">Canadian Virtual Hospice</a>, which provides support and information about palliative and end-of-life care, loss and grieving.</p>
<p>Most people who completed surveys recommend that other LTC homes have a Reflection Room. Many said the project can support those who are grieving and that it is important because it provides a place of respite and self-reflection, and has the potential to support holistic well-being for individuals and communities. </p>
<p>Some visitors to LTC Reflection Rooms commented: </p>
<blockquote>
<p>“It is a coping mechanism, a place to share grief and see how others are feeling, maybe get a tip on how to cope and move on.” – Caregiver</p>
<p>“Some people can’t ‘talk’ about what’s really on their mind, but find it easier to write about it.” – Resident</p>
<p>“It became a heartwarming and meaningful space.” – LTC home staff</p>
</blockquote>
<p><a href="https://ontario.cmha.ca/documents/loss-and-grief-during-the-covid-19-pandemic/">Experiences of grief</a> can include a range of emotions that come and go unpredictably, including anger, joy, numbness and anguish. Acknowledging and naming grief can be an important step in processing loss in a healthy and transformative way. </p>
<p>In grief and bereavement research, <a href="https://doi.org/10.1017/s1478951513001211">studies have found</a> that storytelling has an affirming, healing effect on the storyteller and on those who hear the stories. The Reflection Room project does this by providing an opportunity to acknowledge grief, feel less alone and externalize grief through storytelling. </p>
<p>The Reflection Room has evolved to respond to societal and personal needs surrounding loss and grief. One constant throughout the project is that Reflection Rooms offer visitors an opportunity to slow down, work on processing their grief and feel a sense of connection and solidarity with others. </p>
<p><em>This article was co-authored by Neeliya Paripooranam, Reflection Room project manager.</em></p><img src="https://counter.theconversation.com/content/191245/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Celina Carter works for SE Research Centre.</span></em></p><p class="fine-print"><em><span>Elizabeth Kalles works for the SE Research Centre, SE Health. </span></em></p><p class="fine-print"><em><span>Justine Giosa is the Managing Director of the SE Research Centre, SE Health.</span></em></p><p class="fine-print"><em><span>Paul Holyoke is the Executive Director of the SE Research Centre.</span></em></p><p class="fine-print"><em><span>Barry Stephenson 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>
Reflection Rooms support people making sense of experiences related to dying and death. They provide an immersive space to read stories written by others and write and share their own stories.
Celina Carter, Instructor, University of Toronto
Barry Stephenson, Associate Professor, Religious Studies, Memorial University of Newfoundland
Elizabeth Kalles, PhD student, School of Public Health Sciences, University of Waterloo
Justine Giosa, Adjunct Assistant Professor, School of Public Health Sciences, University of Waterloo
Paul Holyoke, Sessional Lecturer, Health Studies program, University College, University of Toronto
Licensed as Creative Commons – attribution, no derivatives.
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">
<figcaption>
<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>
</figcaption>
</figure>
<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">
<figcaption>
<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>
</figcaption>
</figure>
<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/139093
2020-06-02T12:14:48Z
2020-06-02T12:14:48Z
Dying virtually: Pandemic drives medically assisted deaths online
<figure><img src="https://images.theconversation.com/files/338998/original/file-20200601-95032-ox99k0.jpg?ixlib=rb-1.1.0&rect=37%2C0%2C4955%2C3330&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The late Youssef Cohen moved from New York to Oregon in 2016 because of its aid-in-dying law. During the pandemic, assisted dying for terminal patients has gone online. </span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/youssef-cohen-sits-while-undergoing-cancer-treatment-as-his-news-photo/516336068?adppopup=true">John Moore/Getty Images</a></span></figcaption></figure><p>The coronavirus has <a href="https://theconversation.com/different-faiths-same-pain-how-to-grieve-a-death-in-the-coronavirus-pandemic-138185">stripped many of a say in the manner and timing of their own deaths</a>, but for some terminally ill people wishing to die, a workaround exists. Medically assisted deaths in America are increasingly taking place online, from the initial doctor’s visit to the ingestion of life-ending medications.</p>
<p><a href="https://www.deathwithdignity.org/learn/death-with-dignity-acts/">Assisted dying laws</a> allow terminally ill, mentally competent patients in <a href="https://www.deathwithdignity.org/take-action/">10 U.S. jurisdictions</a> to hasten the end of their life. Waiting periods of 15 to 20 days mean that patients with acute COVID-19 <a href="https://vimeo.com/421297275">won’t likely meet</a> the requirements of these laws.</p>
<p>But the move to digitally assisted deaths during the pandemic has enabled other <a href="https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/requirements.pdf">qualified patients</a> to continue to exercise the right to die. While telemedicine is helping some people die on their own terms, it also makes the process harder on family members, who must now take a more active role in their loved one’s final act. </p>
<h2>Assisted dying in America</h2>
<p>I have spent the <a href="https://anitahannig.com/">last four years studying</a> <a href="https://theconversation.com/assisted-dying-is-not-the-easy-way-out-129424">assisted dying</a> in America, particularly in Oregon and Washington, which have the <a href="https://www.finalexit.org/chronology_right-to-die_events.html">country’s longest-standing assisted dying laws</a>. California, Colorado, the District of Columbia, Hawaii, Maine, Montana, New Jersey and Vermont also allow medical assistance in dying. </p>
<p>A quirk in these laws has enabled the process to go virtual. While extremely <a href="https://www.wbur.org/cognoscenti/2020/02/04/marieke-vervoort-medically-assisted-dying-anita-hannig">restrictive</a> in most ways, U.S. assisted dying laws don’t require a physician or other health care provider to be present at an assisted death.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=872&fit=crop&dpr=1 600w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=872&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=872&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1096&fit=crop&dpr=1 754w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1096&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/338899/original/file-20200601-95009-1kt0kpp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1096&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Aid-in-dying laws give dying patients some agency.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/tish-tanski-massages-her-husband-john-speh-john-speh-is-news-photo/166232921?adppopup=true">Tom Herde/The Boston Globe via Getty</a></span>
</figcaption>
</figure>
<p>Assisted dying laws require two doctors to independently evaluate a patient’s request for medical assistance in dying. But patients must be physically able to ingest the life-ending medication themselves, a safeguard that ensures they are acting voluntarily. </p>
<p>In Canada, by contrast, clinicians <a href="https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-april-2019.html">typically administer</a> the lethal dose through an injection. Normally that’s a <a href="https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Medical_Assistance_in_Dying_MAID.pdf">faster, safer and more effective</a> method. But COVID-19 concerns are compelling some <a href="https://www.theglobeandmail.com/canada/article-medical-assistance-in-dying-services-being-cancelled-in-ottawa/">Canadian providers</a> to suspend assisted deaths.</p>
<h2>Attending to the dying</h2>
<p>Though U.S. physicians aren’t required to attend an assisted death, many patients and their families do have help. In 2019, according to the Oregon Health Authority, <a href="https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year22.pdf">57% of all assisted deaths in Oregon</a> were attended by a physician, another health care provider or a volunteer. </p>
<p><a href="https://eolcoregon.org/">Trained volunteers</a> – many of them former nurses, social workers and behavioral health experts – are critical in helping patients <a href="https://endoflifewa.org/">navigate the tricky path</a> toward an assisted death. They know which physicians are willing to see aid-in-dying patients and which pharmacies stock the necessary medications. </p>
<p>In the United States, doctors prescribe a compound of four drugs – digoxin, diazepam, morphine and amitriptyline – to be mixed with water or juice. Within minutes of drinking the cocktail, the patient falls asleep, the sleep progresses to a coma, and eventually the patient’s heart stops.</p>
<p>Volunteers help mix the medication and supervise the ingestion, allowing families to be emotionally present with a dying loved one.</p>
<p>Now, because of the coronavirus, volunteers are accompanying patients and families over Zoom, and physicians <a href="https://www.acamaid.org/telemedicine/">complete their evaluations through telemedicine</a>, based on recommendations released by the American Clinicians Academy on Medical Aid in Dying in March 2020.</p>
<p>Telehealth – a <a href="https://evisit.com/resources/history-of-telemedicine/">health care solution</a> long used in remote areas – has <a href="https://www.nytimes.com/2020/05/08/health/coronavirus-telemedicine-seniors.html">become a critical tool</a> of the COVID-19 pandemic. But some aid-in-dying physicians have drawn on telemedicine to reach far-flung patients for years. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/339000/original/file-20200601-95013-pxrr4k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">COVID-19 has made telemedicine a staple in healthcare.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/mature-female-doctor-using-digital-tablet-at-royalty-free-image/1200010115?adppopup=true">FG Trade/Getty Images</a></span>
</figcaption>
</figure>
<p>“My patients love telemedicine,” Dr. Carol Parrot, a physician who lives on an island in Washington, told me during a Skype interview in 2018. “They love that they don’t have to get dressed. They don’t have to get into a car and drive 25 miles and meet a new doctor and sit in a waiting room.” </p>
<p>Parrot says she sees 90% of her patients online, visually examining a patient’s symptoms, mobility, affect and breathing. </p>
<p>“I can get a great deal of information for how close a patient is to death from a Skype visit,” Parrot explained. “I don’t feel badly at all that I don’t have a stethoscope on their chest.”</p>
<p>After the initial visit, whether in person or online, aid-in-dying physicians <a href="https://www.acamaid.org/telemedicine/">carefully collate their prognosis with the patient’s prior medical records and lab tests</a>. Some also consult the patient’s primary physician. </p>
<h2>‘Tough and tender situations’</h2>
<p>The pivot to telemedicine hasn’t significantly changed that process. But patient advocacy organizations and physicians say the pandemic has amplified existing <a href="https://theconversation.com/assisted-dying-is-not-the-easy-way-out-129424">problems of access</a> to assisted dying. </p>
<p>“These are tough and tender situations even without COVID,” said Judy Kinney, executive director of the volunteer organization <a href="https://endoflifewa.org/">End of Life Washington</a>, via email. </p>
<p>Invariably, some terminally ill patients who wish to die face <a href="https://www.theguardian.com/society/2020/jan/28/catholic-hospitals-lead-fight-against-access-drugs-assisted-dying">barriers</a>. <a href="https://www.nap.edu/read/25131/chapter/7#103">Some assisted living and nursing facilities</a> have policies against assisted dying for religious reasons. </p>
<p>During the pandemic, residents in these institutions who lack access to a digital device – or the skills to videoconference with a doctor – may not be able to qualify for the law, according to Dr. Tony Daniels, a prescribing physician from Portland.</p>
<p>Meanwhile, a family member who objects to assisted dying may more easily undercut the process when a volunteer isn’t there in person to make sure a patient’s final wishes are carried out. </p>
<h2>Facilitating death</h2>
<p>Dying via telemedicine can be hard even on family members who stand behind their loved one’s decision, my research finds. Without a volunteer or physician present, families must assume a more active role in the dying process. </p>
<p>That includes mixing the life-ending medications themselves. Pre-pandemic, many families told me that preparing the lethal cocktail would make them feel like they were facilitating – and not just morally supporting – a loved one’s death. They were glad to outsource this delicate task. </p>
<p>Now they don’t have that choice. </p>
<p>Yet the option to assist in a loved one’s final act may be a comfort in this pandemic. It allows dying people to choose the manner and timing of their own death – and ensures they won’t be alone.</p>
<p>[<em>You’re too busy to read everything. We get it. That’s why we’ve got a weekly newsletter.</em> <a href="https://theconversation.com/us/newsletters/weekly-highlights-61?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=weeklybusy">Sign up for good Sunday reading.</a> ]</p><img src="https://counter.theconversation.com/content/139093/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anita Hannig does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
Terminally ill patients in nine states and Washington, DC can use telemedicine to get a doctor’s approval to hasten their end of life. But family members must mix the lethal drug cocktail themselves.
Anita Hannig, Associate Professor of Anthropology, Brandeis University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/114724
2019-06-24T12:47:49Z
2019-06-24T12:47:49Z
Not all Americans have a fair path to a good death – racial disparities are real
<figure><img src="https://images.theconversation.com/files/280583/original/file-20190620-149835-1klmhwo.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Not everyone has a chance to die in peace and dignity.</span> </figcaption></figure><p>What does it mean to “die well”?</p>
<p>The world got an idea recently from the 92-year-old Buddhist monk and peace activist Thich Nhat Hanh, who popularized mindfulness and meditation in the U.S. The monk <a href="https://theconversation.com/thich-nhat-hanh-the-buddhist-monk-who-introduced-mindfulness-to-the-west-prepares-to-die-111142">returned to his home in Vietnam</a> to pass his remaining years. Many admired his desire to live his remaining time in peace and dignity.</p>
<p>Researchers from the University of California, San Diego <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828197/pdf/nihms768333.pdf">recently did a literature search</a> to understand what Americans might consider to be a “good death” or “successful dying.” As can be expected, their findings varied. People’s views were determined by their religious, social and cultural norms and influences. The researchers urged health care providers, caregivers and the lay community to have open dialogues about preferences for the dying process. </p>
<p>As <a href="http://www.daniellelbeattymoodyphd.org/">scholars who study social health</a> and <a href="https://www.jasonashe.com/">human services psychology</a>, we found something missing in these conversations – how race impacts life span. </p>
<p>It’s important to recognize that not everyone has an equal chance at “dying well.”</p>
<h2>Black population and ill health</h2>
<p>Take the disease burden of the African American population.</p>
<p>African Americans experience an earlier onset and greater risk of what may be referred to as <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5687082/">lifestyle-related diseases</a>, including cardiovascular disease, stroke and diabetes. More than 40% of African Americans over the age of 20 <a href="https://www.cdc.gov/nchs/data/hus/hus14.pdf">are diagnosed with high blood pressure</a>, compared to 32% of all Americans. </p>
<p>In addition, the <a href="https://www.cdc.gov/stroke/facts.htm">Centers for Disease Control and Prevention</a> reports that the likelihood of experiencing a first stroke is nearly twice as high for African Americans compared with whites. African Americans are <a href="https://www.ahajournals.org/doi/10.1161/01.STR.28.1.15">more than two times more likely to experience a stroke</a> before the age of 55. At age 45, the mortality rate from stroke is <a href="https://www.ahajournals.org/doi/10.1161/STROKEAHA.111.625343">three times higher for blacks compared to whites</a>. </p>
<p>This disease burden consequently leads to their higher mortality rates and overall <a href="https://www.ncbi.nlm.nih.gov/books/NBK367645/#mortality">shorter life expectancy</a> for blacks compared to whites. </p>
<p>And while the life expectancy gap differs by only a few years, <a href="https://www.cdc.gov/nchs/data/nvsr/nvsr67/nvsr67_05.pdf">75.3 for blacks and 78.9 for whites as of 2016</a>, research suggests that <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5687082/">African Americans suffer more sickness</a>. This is due in part to the increased prevalence of <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4108512/">high blood pressure</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3901988/">obesity</a> and <a href="https://www.ncbi.nlm.nih.gov/pubmed/29279935">diabetes</a> in this population. </p>
<p>Genetics, biological factors and lifestyle behaviors, such as diet and smoking, help explain <a href="https://www.ahajournals.org/doi/10.1161/CIR.0000000000000534">a portion of these differences</a>. However, researchers are still learning how race-related social experiences and physical environments affect health, illness and mortality. </p>
<h2>Access to health care</h2>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/280563/original/file-20190620-149822-1q3o7a7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/280563/original/file-20190620-149822-1q3o7a7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/280563/original/file-20190620-149822-1q3o7a7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/280563/original/file-20190620-149822-1q3o7a7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/280563/original/file-20190620-149822-1q3o7a7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/280563/original/file-20190620-149822-1q3o7a7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/280563/original/file-20190620-149822-1q3o7a7.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">African Americans have historically underutilized preventative health services.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/high-angle-view-young-african-woman-342229502?src=ytl5lxYV02JFu5YvKYfyTA-1-43&studio=1">Andrey_Popov</a></span>
</figcaption>
</figure>
<p>One factor is that African Americans have historically <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2796316/">underutilized</a> preventive medicine and health care services. They also delay seeking routine, necessary health care – or may not follow medical advice. </p>
<p>One <a href="https://link.springer.com/article/10.1007/s11606-004-0008-x">study</a> found that during an average month, 35% fewer blacks visited a physician’s office, and 27% fewer visited an outpatient clinic compared with whites. </p>
<p>“The only time I go to the doctor is when something is really hurting. But otherwise, I don’t even know my doctor’s name,” said a young African American male during a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2569257/">research study</a> in Chicago, Illinois. </p>
<p>There are reasons for this mistrust. Researchers who study medical mistrust argue that <a href="https://ajph.aphapublications.org/doi/pdfplus/10.2105/AJPH.87.11.1773">high-profile cases of medical experiments</a> are <a href="https://ajph.aphapublications.org/doi/10.2105/AJPH.2006.100131">still playing a role</a> in how African Americans view health care systems and providers. In the past, physicians have intentionally done harm against people of color. A well-known case is the <a href="https://www.cdc.gov/tuskegee/timeline.htm">Tuskegee Study of Untreated Syphilis</a> in African American men, which lasted from 1932 to 1972. </p>
<p>In this clinical study, 399 African American men, who had already contracted syphilis, were told that they were receiving free health care from the government. In fact, doctors, knowing their critical condition, were awaiting their deaths to subsequently conduct autopsies and study the disease’s progression. </p>
<p>Even though penicillin had been proven to treat syphilis by 1947, these men were denied the treatment. </p>
<h2>Why discrimination matters for health</h2>
<p>Other studies suggest that <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2569322/">regardless of their knowledge of past medical abuse</a>, many African Americans have <a href="https://journals.sagepub.com/doi/abs/10.1093/phr/118.4.358">low levels of trust</a> in medical establishments. </p>
<p>“Doctors, like all other people, are subject to prejudice and discrimination,” writes <a href="http://www.damontweedy.com/">Damon Tweedy</a>, author of <a href="https://books.google.com/books/about/Black_Man_in_a_White_Coat.html?id=H5gQjwEACAAJ&source=kp_book_description">“Black Man in a White Coat: A Doctor’s Reflections on Race and Medicine.”</a> “While bias can be a problem in any profession, in medicine, the stakes are much higher.”</p>
<p>Unfortunately, these fears are underscored by empirical evidence that African Americans are less likely to receive <a href="https://www.pnas.org/content/113/16/4296.short">pain medication management</a>, <a href="https://www.ncbi.nlm.nih.gov/pubmed/25032386">higher-quality care</a> or <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5995336/">survive surgical procedures</a>. </p>
<p>In addition, a growing body of literature has established that experiences of discrimination are extremely harmful for <a href="https://journals.sagepub.com/doi/abs/10.1177/135910539700200305">physical and mental health</a>, particularly <a href="https://psycnet.apa.org/fulltext/1999-11644-001.html">among African Americans</a>. </p>
<p>This research adds to the body of evidence that experiences of discrimination <a href="https://psycnet.apa.org/buy/2009-09537-003">harm people’s health</a> and may contribute to the increased rates of premature decline and death among blacks.</p>
<h2>What does it take to die well?</h2>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/280564/original/file-20190620-149806-ppkjkn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/280564/original/file-20190620-149806-ppkjkn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=436&fit=crop&dpr=1 600w, https://images.theconversation.com/files/280564/original/file-20190620-149806-ppkjkn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=436&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/280564/original/file-20190620-149806-ppkjkn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=436&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/280564/original/file-20190620-149806-ppkjkn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=547&fit=crop&dpr=1 754w, https://images.theconversation.com/files/280564/original/file-20190620-149806-ppkjkn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=547&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/280564/original/file-20190620-149806-ppkjkn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=547&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">African Americans are exposed to more frequent death of loved ones.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/black-white-portrait-tearful-africanamerican-woman-441280438?src=8uaY2CkNN8c_HEJPZJTmIQ-1-0&studio=1">Laurin Rinder</a></span>
</figcaption>
</figure>
<p>As African American scholars, we argue the “art of dying well” may be a distant and romantic notion for the African American community. </p>
<p>African Americans are also exposed to earlier and <a href="https://www.ncbi.nlm.nih.gov/pubmed/28115712">more frequent deaths</a> of close loved ones, immediate family members and friends.</p>
<p>Their increased <a href="https://books.google.com/books/about/Passed_On.html?id=v5qFDwAAQBAJ&source=kp_book_description">“vulnerability to untimely deaths</a>,” writes Duke University scholar <a href="https://www.karlaholloway.com/">Karla Holloway</a>, shows African Americans’ lack of access to equitable and fair paths in life. </p>
<p>Before defining “a good death,” American society must first begin to fundamentally address how to promote quality living and longevity across all racial groups.</p><img src="https://counter.theconversation.com/content/114724/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jason Ashe receives funding from the Robert Wood Johnson Foundation. </span></em></p><p class="fine-print"><em><span>Danielle L. Beatty Moody receives funding from NIH </span></em></p>
There are many conversations these days around ‘successful dying.’ Two African American scholars argue why these conversations need to include race and how it impacts life span.
Jason Ashe, Doctoral Student (Ph.D.), Human Services Psychology, University of Maryland, Baltimore County
Danielle L. Beatty Moody, Assistant Professor, Behavioral Medicine & Community Psychology Subprograms, University of Maryland, Baltimore County
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/106063
2018-12-18T19:12:16Z
2018-12-18T19:12:16Z
Not a season to be jolly: how to deal with dying during the holidays
<figure><img src="https://images.theconversation.com/files/249903/original/file-20181211-76986-avt73p.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Knowing death is coming but not knowing when is particularly unsettling.</span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/GivWtOgGyAY">Osman Rana/Unsplash</a></span></figcaption></figure><p>Dying doesn’t disappear at Christmas. For those who know death will come soon but don’t know exactly when, the festive season, when the air is thick with “joy”, can be particularly unsettling. </p>
<p>As a psychotherapist working in palliative care, I often see distressed patients in the lead up to Christmas. Patients can find decorations and carols being played in shopping centres particularly triggering, reminding them this may be their last Christmas.</p>
<p>The dying person may often face an inner struggle. They may want to be involved in activities but may not have the physical and emotional capacity to deal with the heightened stress and stimulation. Some may prefer to sit quietly and watch proceedings without necessarily being amongst the action, but still feeling like they are a part of things.</p>
<p>Regardless of the the type of life-threatening illness, and whether an infant, child, adolescent, young, middle or older aged person is dying, both the patient and their family members <a href="https://openventio.org/wp-content/uploads/The-Role-of-Emotions-in-Palliative-Care-PMHCOJ-4-127.pdf">may experience deep distress</a>. You may feel the impending death, and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4312517/pdf/nihms646956.pdf">your family</a> the anticipated loss. These gloomy or morbid feelings might clash with the celebrations of Christmas.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/palliative-care-for-children-often-involves-treating-the-whole-family-84205">Palliative care for children often involves treating the whole family</a>
</strong>
</em>
</p>
<hr>
<p>Whether it’s you or a loved one <a href="https://www.cancercouncil.com.au/wp-content/uploads/2014/05/UC-Pub-Facing-End-of-Life-CAN4407-lo-res-March-2017.pdf">facing dying</a> at this time of year, there are some practical tips available that draw from a wealth of <a href="https://www.cancer.org/treatment/end-of-life-care/nearing-the-end-of-life/emotions.html">research</a> and <a href="http://www.thegroundswellproject.com/">experience</a>. </p>
<h2>If you are the one dying</h2>
<p>Where possible, plan ahead how you want to spend your Christmas festive period so you don’t place additional pressure on yourself. Think about <a href="https://www.psychologytoday.com/au/blog/the-new-grief/201111/holiday-planning-and-terminal-illness">the most comfortable arrangements</a> for you. Where and with whom do you want to spend Christmas Day? Which is the best time of day for you to manage different activities? Let people close to you know your thoughts. </p>
<p>The <a href="https://www.cancervic.org.au/get-support/facing-end-of-life/caring-for-someone-nearing-the-end-of-life">process of dying</a> is unique to each individual. It may be quick or slow, spread over weeks or days. Palliative care specialist at Stanford University, <a href="http://www.oxfordscholarship.com/view/10.1093/acprof:oso/9780195165784.001.0001/acprof-9780195165784">Dr James Hallenbeck</a> wrote:</p>
<blockquote>
<p>For those who do die gradually, there’s often a final, rapid slide that happens in roughly the last few days of life — a phase known as ‘active dying’. A person may begin to lose their senses and desires. First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.</p>
</blockquote>
<p>We have an ideal perception around death, that a dying person wants to be surrounded by family in their final hours. But some people in the active phase of dying may actually <a href="https://www.tandfonline.com/doi/full/10.1080/13576275.2017.1413542">prefer to be alone</a>. And while this may be difficult for family members to hear, you can give yourself permission to ask for whatever you would like.</p>
<p>Studies indicate some dying people may feel they’re <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2632772/">a burden</a> to <a href="https://www.jpsmjournal.com/article/S0885-3924(10)00311-8/pdf">their family</a>. Other people have difficulty saying “no” because they don’t want to disappoint or hurt others, or they may fear conflict. Know your limitations and don’t push beyond these to simply please others.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/250866/original/file-20181217-185261-1vnhhba.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/250866/original/file-20181217-185261-1vnhhba.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/250866/original/file-20181217-185261-1vnhhba.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/250866/original/file-20181217-185261-1vnhhba.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/250866/original/file-20181217-185261-1vnhhba.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/250866/original/file-20181217-185261-1vnhhba.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/250866/original/file-20181217-185261-1vnhhba.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/250866/original/file-20181217-185261-1vnhhba.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Many dying people feel they may be a burden to their families.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>Have kind consideration for yourself. Remember <a href="https://palliativecare.org.au/how-to-upload-patient-dignity-at-end-of-life">you are a person</a> before you’re a patient. And remember it’s OK to say “no” and forgo invitations.</p>
<h2>If you’re caring for a loved one who is dying</h2>
<p>Essential care demands such as helping the person you are caring for to feed, go to the toilet, and clean themselves, will not disappear at Christmas. If your loved one is <a href="https://www.economist.com/international/2017/04/29/a-better-way-to-care-for-the-dying">dying at home</a>, they may require unrelenting attention.</p>
<p>Be realistic with your expectations. This can be a different and simpler Christmas than others. Allow for spontaneity. Try not to be a martyr and delegate and ask others to help. Doing so enables others to feel they’re included and contributing in special ways.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/looking-after-a-dying-loved-one-at-home-heres-what-you-need-to-know-83499">Looking after a dying loved one at home? Here's what you need to know</a>
</strong>
</em>
</p>
<hr>
<p>Listen to the person who is dying. Let them speak if and when they can. Gauge their mood and <a href="https://cna.plus/talk-to-cancer-and-dying-patients/">be guided by them</a>. There is value in <a href="https://bmcnurs.biomedcentral.com/track/pdf/10.1186/1472-6955-13-25">being present</a> with the dying person without talking.</p>
<p>Heightened noise and activity, which often go hand in hand with the holiday season, can create distress for a terminally ill person. Ask family and friends to roster their visits over the different days of Christmas so as not to <a href="https://www.caresearch.com.au/caresearch/ClinicalPractice/Physical/Fatigue/tabid/235/Default.aspx">tire</a>, overwhelm or stress the dying person. </p>
<p>People can think children don’t understand death and wouldn’t be able to cope with the concept, so often they may protect them by hiding it. But children are attuned to the family emotional dynamics. They know something is happening and they need their feelings validated. It can be helpful to get children involved in taking care of someone who is dying. </p>
<p>Research shows <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2602625/pdf/0541693.pdf">children do manage</a> themselves well in the face of dying, when adults support them to deal with their responses.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/adults-can-help-children-cope-with-death-by-understanding-how-they-process-it-58057">Adults can help children cope with death by understanding how they process it</a>
</strong>
</em>
</p>
<hr>
<p>Expect things can change quite suddenly. Have a backup plan ready. Keep emergency contact details readily on hand always.</p>
<p>When dying is happening at Christmas, it’s best to allow all feelings to be expressed rather than simply putting on a brave or smiling face. Feelings are a natural response to suffering and what may be a stressful situation. </p>
<p>It’s mostly important to remember not to hide your needs and feelings but to speak and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5618053/pdf/behavsci-07-00045.pdf">communicate</a> with your loved ones. Especially when dying may be imminent.</p><img src="https://counter.theconversation.com/content/106063/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Karen Anderson does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
The dying person may face an inner struggle. They may want to be involved in activities but may not have the physical and emotional capacity to deal with the heightened stress and stimulation.
Karen Anderson, Practitioner Scholar, Edith Cowan University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/95345
2018-05-01T10:40:45Z
2018-05-01T10:40:45Z
Being clear about your last wishes can make death easier for you and loved ones
<figure><img src="https://images.theconversation.com/files/216879/original/file-20180430-135840-19zvyf7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A living will can lessen grief and stress, studies suggest. </span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-couple-signing-will-documents-elderly-428797687?src=Aa9qNXHXF0aeeQfawZ_D4w-1-3">Jacob Lund/Shutterstock.com </a></span></figcaption></figure><p>Barbara Bush’s <a href="https://www.nytimes.com/2018/04/17/us/barbara-bush-dead.html">recent death</a> and the way she prepared for it remind us that death can be peaceful and marked by family togetherness rather than conflict. </p>
<p>Mrs. Bush chose <a href="https://www.usatoday.com/story/news/nation/2018/04/16/barbara-bush-seeking-comfort-care-what-does-mean-stop-fighting-terminal-illness/520811002/">palliative, or comfort, care</a> over aggressive medical treatment given her age and overall health status. Her family agreed to support her decisions. </p>
<p>It does not always work this way, but it could. </p>
<p>I recently published a book with Dr. David P. Schenck entitled <a href="https://www.springer.com/us/book/9783319709192">“Communication and Bioethics at the End of Life: Real Cases, Real Dilemmas.”</a> We include several cases in which such family discussions did not occur. This lack of information led to an unfortunate cascade of events that made the patient’s deaths more difficult, and left lasting scars on both family members and clinicians.</p>
<h2>Most of us won’t die at home</h2>
<p>While we might hope for a quick death at home, a <a href="https://www.cdc.gov/nchs/data/dvs/LCWK9_2015.pdf">majority of us will die</a> from a chronic condition like heart disease, cancer, or respiratory disease, and nearly 80 percent will die in an institutional setting, following an <a href="http://www.pbs.org/wgbh/pages/frontline/facing-death/facts-and-figures/">explicit decision</a> to suspend life-sustaining treatment. </p>
<p><a href="https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/">Advance directives</a> or living wills are made to ensure their preferences guide decisions should the person be unable to communicate them.</p>
<p>Studies have shown that discussions between family members can greatly improve <a href="https://www-sciencedirect-com.ezproxy.lib.usf.edu/science/article/pii/S0885392412001613">end-of-life planning and decision-making</a>. Patients who have discussed end-of-life care with their families generally have shorter stays in intensive care units and more timely “do not resuscitate” orders. These can prevent attempts to perform cardiopulmonary resuscitation and instead allow a natural death to occur. Patients and family members who are prepared experience <a href="http://www.nejm.org.ezproxy.lib.usf.edu/doi/full/10.1056/nejmoa063446">lower rates of depression and anxiety</a> when a family member nears death.</p>
<p>On the other hand, <a href="http://ajcc.aacnjournals.org.ezproxy.lib.usf.edu/content/12/4/317.short">neglecting to discuss such issues</a> can result in longer hospital stays, a greater likelihood of continuing life-sustaining treatment <a href="http://ajcc.aacnjournals.org.ezproxy.lib.usf.edu/content/12/4/317.short">against a patient’s preferences</a>, and poorer quality of life for patients and family members. </p>
<h2>Changes have been in the works</h2>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/216880/original/file-20180430-135803-183wpro.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/216880/original/file-20180430-135803-183wpro.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=414&fit=crop&dpr=1 600w, https://images.theconversation.com/files/216880/original/file-20180430-135803-183wpro.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=414&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/216880/original/file-20180430-135803-183wpro.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=414&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/216880/original/file-20180430-135803-183wpro.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=520&fit=crop&dpr=1 754w, https://images.theconversation.com/files/216880/original/file-20180430-135803-183wpro.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=520&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/216880/original/file-20180430-135803-183wpro.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">
<figcaption>
<span class="caption">Congress passed a law in 1991, when George H.W. Bush was president, making it mandatory to ask patients if they have a living will.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/washington-dc-usa-27th-february-1991-724126150?src=M0-3E8Z8HAlcSliupLb0VQ-1-0">Mark Reinstein/Shutterstock.com</a></span>
</figcaption>
</figure>
<p>Congress passed a law in 1991, while Bush’s husband was president, that made it mandatory for hospitals to ask patients if they had an advance directive upon admission. But even before the law, called the <a href="https://www.congress.gov/bill/101st-congress/house-bill/4449">Patient Self-Determination Act</a>, was passed, physicians had been encouraged to talk to their patients about end-of-life care. </p>
<p>Medicare billing codes introduced in 2016 <a href="https://theconversationproject.org/wp-content/uploads/2016/06/CMS-Payment-One-Pager.pdf">allowed physicians to charge</a> for time spent in end-of-life conversations with patients.</p>
<p>Despite these legislative and policy initiatives, <a href="https://www.ncbi.nlm.nih.gov/pubmed/22574841">physicians remain reluctant</a> to discuss dying with their patients. Even if they do, it is unlikely that one’s primary care doctor will be present when deciding about a patient’s end-of-life care. </p>
<p>And most American adults have not completed an advance directive or living will; about 33 percent do. This leaves <a href="https://doi.org/10.1377/hlthaff.2017.0175">two-thirds of families</a> without the information they need to guide end-of-life decisions with or for a family member. </p>
<h2>A buzz-kill conversation, but a crucial one</h2>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/216883/original/file-20180430-135840-1bcrfh2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/216883/original/file-20180430-135840-1bcrfh2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/216883/original/file-20180430-135840-1bcrfh2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/216883/original/file-20180430-135840-1bcrfh2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/216883/original/file-20180430-135840-1bcrfh2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/216883/original/file-20180430-135840-1bcrfh2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/216883/original/file-20180430-135840-1bcrfh2.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">
<figcaption>
<span class="caption">Our medical system is geared to keep people alive, and death is often deemed a failure, the author writes.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/surgeons-operative-room-above-dead-patient-173782655?src=tbqTe-zvTqqFEf1syJU5AQ-1-18">kotin/Shutterstock.com</a></span>
</figcaption>
</figure>
<p>Conversations about death and dying are difficult. We Americans live in a society that seems to deny death and receive care in a medical culture that views death as failure. Conversations about death are difficult because they are multifaceted and complex. Simply bringing up the topic of dying can trigger a range of interpretations and concerns. For example, if you ask your mother what her end-of-life treatment goals are, she might perceive you as caring, or she might think you are questioning her capacity to manage her own affairs. </p>
<p>How might family members pursue such difficult conversations, what dilemmas and barriers exist, and what strategies might allow high-quality conversations to take place?</p>
<p>My research assistant, Philip Barrison, and I recently undertook a study, which we intend to submit to an academic journal called Health Communication, to address these crucial questions. We conducted an online survey asking people to respond to a hypothetical scenario: “A family member has asked you to make medical decisions for them if they are unable to make them for themselves, but has not given you any guidance. You want more information about their end-of-life wishes, so how would you proceed to have this conversation?”</p>
<p>We asked participants to write about their goals, the barriers they think they would encounter, and strategies that might be useful. </p>
<p>Our data revealed four goals associated with these conversations: compassion, comprehension, conflict and commitment. Compassion reflects participants’ desire to make their family member feel wanted and needed, even while discussing a time after which they would no longer be around. </p>
<p>Comprehension relates to the need to be forceful about soliciting specific information while at the same time being gentle and respectful. </p>
<p>Conflict refers to the practical necessity of designating a single decision maker without provoking disagreements among family members. Commitment describes the tension between the honor and burden of being trusted as a decision-maker for a loved one. </p>
<p>Strategies that emerged from our analysis for achieving these goals included using humor when appropriate; discussing end-of-life issues more generally within the family rather than focusing on the person most likely to need assistance; reading a book, watching a relevant television show or movie, or discussing the end-of-life situation of another person; or suggesting some specific ideas and asking for a response. </p>
<p>While every family is different, family members should and often do find creative ways to have these conversations and avoid future problems.</p>
<p>Our results showed that family members have similar concerns whether they imagined talking to a parent, sibling, or other relative. Only when participants imagined talking to a spouse or partner did another strategy emerge: allowing one’s partner not to discuss their end-of-life preferences if they chose not to. </p>
<p>When a person imagined talking to a parent or other family member, the theme of needing to push to get information was pervasive. When adult children are making decisions for a parent, for example, the possibility of family conflict is ever-present. That may have led our would-be decision makers to believe they would need to press for more information even if they encountered substantial resistance. </p>
<p>Our sense is that spouses know they are likely to be the uncontested decision makers for one another, being in a position to both know the other person very well and to be most directly affected by their spouse’s life or death. </p>
<p>There is no perfect template for an advance directive, or a foolproof guide to family conversations about death and dying. It may be emotional, there might be conflict, and it is unlikely that families can anticipate every end-of-life situation. </p>
<p>However, there is great benefit to starting these conversations at your next family gathering and keeping the conversation going as parents and spouses age. We can all aspire to a death as dignified as that of Barbara Bush, and talking to your family in advance is a clear step in the right direction.</p><img src="https://counter.theconversation.com/content/95345/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lori A. Roscoe 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>
Few people like to talk about death, but research is suggesting that people should talk with loved ones about their wishes for their final days. You may be surprised which family member is most supportive.
Lori A. Roscoe, Associate Professor of Health Communication, University of South Florida
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/87168
2017-11-14T07:16:20Z
2017-11-14T07:16:20Z
Four reasons Victorian MPs say ‘no’ to assisted dying, and why they’re misleading
<p>Victoria’s upper house has <a>resumed its debate</a> on the <a href="http://www.legislation.vic.gov.au/domino/Web_Notes/LDMS/PubPDocs.nsf/ee665e366dcb6cb0ca256da400837f6b/d162e1f2fcc3f7c3ca2581a1007a8903!OpenDocument">Voluntary Assisted Dying bill</a>. The bill is now at the committee stage and a <a href="http://www.abc.net.au/news/2017-11-14/euthanasia-laws-likely-to-pass-in-victoria/9148928">vote is expected</a> as soon as Thursday (it needs 21 votes to pass).</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"926312738296537089"}"></div></p>
<p>At the conclusion of its last sitting, the Legislative Council voted 22:18 in favour of the legislation. Of the 18 members who voted “no”, 15 gave speeches articulating reasons for their view. We examined those speeches and identified four major themes. These were: the bill doesn’t have adequate safeguards to protect the vulnerable; legalising assisted dying presents a slippery slope; palliative care services must be improved first; and a doctor’s duty is to treat, not to kill.</p>
<p>Some of these arguments are misleading and they all require close scrutiny.</p>
<h2>1. Insufficient safeguards</h2>
<p>The most frequently cited reason for opposing the bill was the inability of safeguards to adequately protect the vulnerable. Liberal Bernie Finn <a href="https://www.parliament.vic.gov.au/images/stories/daily-hansard/Council_2017/Council_Daily_Extract_Thursday_2_November_2017_from_Book_18.pdf">expressed concern</a> that: </p>
<blockquote>
<p>There is no regard to treatable depression or other mental illness that may be driving a request to seek suicide, so long as the patient has decision-making
capacity. […]</p>
</blockquote>
<p>Rachel Carling-Jenkins of Cory Bernardi’s Australian Conservatives <a href="https://www.parliament.vic.gov.au/images/stories/daily-hansard/Council_2017/Council_Daily_Extract_Thursday_2_November_2017_from_Book_18.pdf">noted the bill</a>:</p>
<blockquote>
<p>[…] has no detail on how an assessing doctor will satisfy themselves that the person has informed consent in the regime. </p>
</blockquote>
<p>And the Liberal David McLean Davis <a href="https://www.parliament.vic.gov.au/images/stories/daily-hansard/Council_2017/Council_Daily_Extract_Thursday_2_November_2017_from_Book_18.pdf">said he was voting against the bill</a> as it didn’t adequately address issues of “pressure and duress”. He said:</p>
<blockquote>
<p>[…] I am very concerned that there will be those who seek to inherit,
those who seek to take advantage of a vulnerable person.</p>
</blockquote>
<p>Concerns that vulnerable people are at risk under such laws have been rejected in top peer-reviewed journals such as <a href="https://www.ncbi.nlm.nih.gov/pubmed/22789501">The Lancet</a> and the <a href="https://www.ncbi.nlm.nih.gov/pubmed/17494928">New England Journal of Medicine</a> as well as by the <a href="https://www.canlii.org/en/bc/bcsc/doc/2012/2012bcsc886/2012bcsc886.html">Canadian courts</a>, who have <a href="https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do">cross-examined evidence</a> testing the findings of this research. Justice Smith of the Supreme Court of British Columbia concluded that:</p>
<blockquote>
<p>the empirical evidence gathered in the two jurisdictions [Netherlands and Oregon] does not support the hypothesis that physician-assisted death has imposed a particular risk to socially vulnerable populations. </p>
</blockquote>
<p>Further, the Victorian bill does address “treatable depression” in the sense that a person can only access assisted dying if they are assessed to have mental capacity to make the decision. If the doctor is unsure about this – for example because of the patient’s depression – the doctor must refer the person to a health professional with appropriate skills to assess capacity. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/victoria-may-soon-have-assisted-dying-laws-for-terminally-ill-patients-81401">Victoria may soon have assisted dying laws for terminally ill patients</a>
</strong>
</em>
</p>
<hr>
<p>The concern about doctors not being confident of informed consent is also surprising. As part of everyday practice, doctors are aware of their legal obligation to inform patients about treatment, and the need to obtain consent for it. The bill also contains a detailed list of information that must be provided to someone seeking assistance including the person’s diagnosis and prognosis, possible treatment options, palliative care options, the potential risks of taking the substance and the expected outcome of doing so.</p>
<h2>2. The slippery slope</h2>
<p>The slippery slope argument contends that even though the Victorian model is currently a conservative one, that doesn’t mean it won’t evolve over time. Labor’s Nazih Elasmar <a href="https://www.parliament.vic.gov.au/images/stories/daily-hansard/Council_2017/Council_Daily_Extract_Friday_3_November_2017_from_Book_18.pdf">argued that</a> </p>
<blockquote>
<p>[…] it has been the norm for euthanasia laws to become increasingly permissive […] The Netherlands and Belgium are perfect examples. Euthanasia laws in the Netherlands now apply to children as young as 12, while in Belgium there is no age limit.“</p>
</blockquote>
<p>But this argument is also misleading. The Victorian bill is modelled on the <a href="http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Pages/faqs.aspx">Oregon Death with Dignity Act</a> which has not been amended since it was enacted 20 years ago. It is disingenuous to suggest a broadening of the law is the "norm”. In this regard, the Netherlands and Belgium are not “perfect examples”.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/in-places-where-its-legal-how-many-people-are-ending-their-lives-using-euthanasia-73755">In places where it's legal, how many people are ending their lives using euthanasia?</a>
</strong>
</em>
</p>
<hr>
<h2>3. Palliative care should improve instead</h2>
<p>In terms of palliative care, there were two inter-related arguments. First, that we should be focusing on increased funding to palliative care to widen its reach, instead of introducing assisted dying. </p>
<p>Liberal Joshua Morris <a href="https://www.parliament.vic.gov.au/images/stories/daily-hansard/Council_2017/Council_Daily_Extract_Thursday_2_November_2017_from_Book_18.pdf">stated that</a> for “palliative care not to be appropriately funded in our state […] is nothing short of shameful” and that provision of palliative care “must be in place before a bill of this type is considered”.</p>
<p>The second argument is that offering people assisted dying but not palliative care, as <a href="https://www.parliament.vic.gov.au/images/stories/daily-hansard/Council_2017/Council_Daily_Extract_Thursday_2_November_2017_from_Book_18.pdf">Labor’s Daniel Mulino said</a>, “is not a real choice”. </p>
<p>But access to assistance in dying is a separate and distinct issue. Chair of Victoria’s advisory panel for the assisted dying legislation, Professor Brian Owler, <a href="http://www.abc.net.au/news/programs/national-press-club/2017-10-13/national-press-club:-brian-owler/9047378">has said</a> palliative care is the “main game” when treating patients approaching the end of their lives. This will always remain so. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"926301395090886658"}"></div></p>
<p>Funding for palliative care should be increased so that palliative care services are available to all who need it. The government can, at the same time, increase funding for palliative care and pass legislation allowing assistance to die. We are advocates for palliative care and would welcome that outcome.</p>
<p>As for the issue of choice, it makes no sense to suggest an otherwise eligible person should not have assistance to die because he or she does not have access to palliative care. The proponents of this argument are effectively saying it is better to have no options rather than one option at the end of life, which cannot be right.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/assisted-dying-is-one-thing-but-governments-must-ensure-palliative-care-is-available-to-all-who-need-it-86131">Assisted dying is one thing, but governments must ensure palliative care is available to all who need it</a>
</strong>
</em>
</p>
<hr>
<h2>4. Doctors should do no harm</h2>
<p>This argument holds that an assisted dying bill will <a href="https://www.parliament.vic.gov.au/images/stories/daily-hansard/Council_2017/Council_Daily_Extract_Thursday_2_November_2017_from_Book_18.pdf">undermine the nature of the doctor-patient relationship</a>, which is based on trust. Arguments in this theme also contend assisting patients to die is the very antithesis of what doctors do. Nazih Elasmar <a href="https://www.parliament.vic.gov.au/images/stories/daily-hansard/Council_2017/Council_Daily_Extract_Friday_3_November_2017_from_Book_18.pdf">referred to the Hippocratic oath</a>, noting that it says “first, do no harm”.</p>
<p>It’s important to note that for a person to be eligible for assisted dying under the Victorian bill, the time of healing has passed. The person is terminally ill and will inevitably die. </p>
<p>Secondly, many in our community including health professionals do not regard assisted dying as a “harm”. A recent <a href="http://www.austlii.edu.au/cgi-bin/sinodisp/au/cases/vic/VCAT/2016/2150.html?stem=0&synonyms=0&query=health%20or%20doctor%20or%20nurse%20or%20hospital%20or%20clinic%20or%20surgeon%20or%20dentist%20or%20psychologist%20or%20clinic">Tribunal decision</a> has accepted this view. </p>
<p>What counts as harm depends on context. For example, we do not normally think surgeons are violating the Hippocratic oath when they cut into our skin during life-saving surgery, yet cutting into our skin is a form of harm. We accept this harm because it is outweighed by the fact the surgery is life-saving. We can similarly argue helping people die more comfortably is not a form of harm, but is actually a benefit. </p>
<p>Thirdly, it is important to acknowledge that every day doctors, patients and families make decisions to withhold or withdraw treatment that will result in a patient’s death. Pain relief is also provided knowing this can accelerate death. These actions are not thought to undermine the doctor-patient relationship.</p>
<p>As the debate over the bill continues in Victoria’s Legislative Council, we repeat our <a href="https://theconversation.com/as-victorian-mps-debate-assisted-dying-it-is-vital-they-examine-the-evidence-not-just-the-rhetoric-84195">earlier call</a> that all MPs interrogate their positions, including the biases that underpin them, to be intellectually rigorous. Debates must be being based on reliable evidence.</p><img src="https://counter.theconversation.com/content/87168/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lindy Willmott receives funding from the Australian Research Council and the National Health and Medical Research Council for research into law, policy and practice relating to end-of-life care. She is also a board member of Palliative Care Australia. The views expressed are her personal views and not necessarily views of the organisation.</span></em></p><p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council and the National Health and Medical Research Council for research into law, policy and practice relating to end-of-life care.</span></em></p><p class="fine-print"><em><span>Andrew McGee does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
The main arguments used by those who voted against assisted dying – including that the bill has insufficient safeguards – in Victoria’s upper house, deserve further scrutiny.
Lindy Willmott, Professor of Law and Director, Australian Centre for Health Law Research, Queensland University of Technology
Andrew McGee, Senior Lecturer, Faculty of Law, Queensland University of Technology
Ben White, Professor of Law and Director, Australian Centre for Health Law Research, Queensland University of Technology
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/82247
2017-11-02T19:04:02Z
2017-11-02T19:04:02Z
It’s not all about death: conversations with patients in palliative care
<figure><img src="https://images.theconversation.com/files/185969/original/file-20170914-6567-yz4qha.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Palliative care patients talk far more of life than of death.</span> <span class="attribution"><a class="source" href="https://unsplash.com/search/photos/floating?photo=jM6xqNs2C0s">Photo by Yaoqi LAI on Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p><em>This article is part of our series on <a href="https://theconversation.com/au/topics/demystifying-palliative-care-45213">demystifying palliative care</a>, where experts explain the process of end-of-life care in Australia.</em></p>
<hr>
<p>When I introduce myself to a patient as a palliative care doctor, the question that often follows is: “Am I dying?”</p>
<p>I guess in one sense we’re all dying. In this case, though, the question implies an immediacy. Yet working in palliative care involves surprisingly little immediate dying. </p>
<p>Yes we work with people who have incurable illnesses, but their prognoses vary between weeks, months and even years. And we see other patients potentially being cured but who experience significant side effects from treatment.</p>
<p>Our team works in clinics, in the hospital, out in the community, at the chemotherapy centre, and in our palliative care or hospice units. </p>
<p>Here is a snapshot of the conversations I have in a working day, and they involve discussions of life far more than they do death.</p>
<hr>
<h2>Keith</h2>
<p>Keith visits the clinic every two months. “Hey Doc, I ain’t carked it yet. Bloody cancer is lazy.”</p>
<p>“The cancer must be waiting for the Tigers to win the premiership,” I reply.</p>
<p>Keith is in his late 70s and describes himself as having “a good and slightly mischievous life”. He has colon cancer, which has spread to his liver and lungs. </p>
<p>Initially, he had chemotherapy but experienced significant side effects requiring two hospitalisations. He then decided the most important thing was enjoying time with friends, family and his two dogs, so he opted to cease chemotherapy. </p>
<p>Our palliative care team saw him on his second visit to hospital to address his pain. Keith visits the clinic every two months to manage his appetite and fatigue, and discuss progress and his choices for the future. </p>
<p>“While I feel good, let me be. When I’m not, let me go,” he’s said to me.</p>
<p>As a doctor, knowing what people want is of vital importance. And these discussions are valuable for us to gather the kind of information we need to know exactly what treatments to provide for that person. </p>
<p>Family members <a href="http://www.bmj.com/content/340/bmj.c1345">report less distress</a> when they know what kinds of treatments their loved one wants – as they aren’t shouldered with the burden of making difficult decisions at emotional times. </p>
<p>Advance care plans, which set out the patient’s preferences, are invaluable in this instance for both family members and doctors. Their value is in allowing that person the agency of control, especially when their life is not being dictated on their own terms.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/take-control-over-the-end-of-your-life-what-you-need-to-know-about-advance-care-directives-62905">Take control over the end of your life: what you need to know about advance care directives</a>
</strong>
</em>
</p>
<hr>
<p>Keith will die, maybe in two months, maybe in ten. The conversation today is not about that though. Right now, Keith struggles with fatigue and poor appetite, which we discuss in detail. “I feel OK at the moment and can deal with feeling a bit crappy at times, especially with having all the family around.”</p>
<p>Keith discusses his love for his children and Richmond’s forward line. We talk about some ideas for his appetite and organise prescriptions for an upcoming holiday with his wife.</p>
<h2>Christos</h2>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/185972/original/file-20170914-6564-17vof3s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/185972/original/file-20170914-6564-17vof3s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/185972/original/file-20170914-6564-17vof3s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/185972/original/file-20170914-6564-17vof3s.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/185972/original/file-20170914-6564-17vof3s.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/185972/original/file-20170914-6564-17vof3s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/185972/original/file-20170914-6564-17vof3s.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/185972/original/file-20170914-6564-17vof3s.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Christos hardly leaves his flat.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/search/photos/apartment-stairs?photo=yuhjpNvG9u0">Photo by Daryan Shamkhali on Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Christos breathes deeply on his way to the chair. Greetings wait until he has had time to catch his breath.</p>
<p>“How are you, Chris?” I ask.</p>
<p>“Well, I ain’t done much since I saw you last month. But no visits to hospital, so not all bad. Still feel crap though.” </p>
<p>Chris has been a heavy smoker since the age of 14. He is now 58 and struggles to walk 20 metres or dress himself. He lives alone in a nearby council flat, which he rarely leaves. Life is a constant struggle.</p>
<p>He has end-stage lung disease from smoking and is a frequent visitor to the emergency department during infections. He visits our clinic monthly to manage his breathing and anxiety and to organise home nursing support, all of which <a href="http://erj.ersjournals.com/content/32/3/796">can improve his quality of life</a>.</p>
<p>Chris is not dying. We expect he will have further lung infections in the near future, which he may survive, or he may die from.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-what-is-chronic-obstructive-pulmonary-disease-25539">Explainer: what is chronic obstructive pulmonary disease?</a>
</strong>
</em>
</p>
<hr>
<p>“My sister keeps giving me grief about smoking. I have told her my lungs are already stuffed, so what’s it going to matter? Do you reckon I should quit?” Chris asks.</p>
<p>“It depends on what you want,” I answer. “Quitting might slow down the process of your lungs deteriorating, but it probably isn’t going to make your breathing much better.”</p>
<p>“So I will live longer?”</p>
<p>“Yeah, it might make you live longer, but you will be living like you are now.”</p>
<p>“Bugger that!” Chris exclaims. “I can barely look after myself now. Why would I want to extend that?”</p>
<p>“Do you enjoy smoking?” I ask. Smoking is Chris’s choice, and it may give him pleasure in the short time he may have left.</p>
<p>“Well, yeah, I do. I know it’s going to kill me, but at least it’s my choice to do it.” </p>
<h2>Sharon</h2>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/185970/original/file-20170914-6572-v8mn1p.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/185970/original/file-20170914-6572-v8mn1p.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/185970/original/file-20170914-6572-v8mn1p.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/185970/original/file-20170914-6572-v8mn1p.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/185970/original/file-20170914-6572-v8mn1p.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/185970/original/file-20170914-6572-v8mn1p.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/185970/original/file-20170914-6572-v8mn1p.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/185970/original/file-20170914-6572-v8mn1p.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Sharon would rather not talk about where she’s going.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/bhE2HWhO9U0">Photo by remi skatulski on Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Sharon is in her late 40s and has spent much of the last few months in and out of hospital. For most of the last decade she has been “fighting” metastatic breast cancer, which continues to progress despite trying every available treatment. </p>
<p>As a consequence of chemotherapy she suffers from severe heart failure, causing her to be profoundly fatigued.</p>
<p>“I am feeling so much better today; definitely will be going home tomorrow,” she states as I enter the hospital room. “If I keep getting stronger we can hopefully look at another chemo or a trial in a few weeks.” </p>
<p>“Great to hear you are feeling better, Sharon. How are the family?” I ask. </p>
<p>I have met Sharon’s husband and two teenage children a number of times. They are struggling to keep their lives together while having a wife and mum who is deteriorating. They know she is dying, but feel unable to talk to her about it. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/looking-after-a-dying-loved-one-at-home-heres-what-you-need-to-know-83499">Looking after a dying loved one at home? Here's what you need to know</a>
</strong>
</em>
</p>
<hr>
<p>I have talked to Sharon’s oncologist, who has discussed with her there are not any more treatment options for her cancer. Right now, Sharon struggles to get out of bed. Further chemotherapy is likely to make her very unwell or even cause her death. </p>
<p>Balancing these hopes with realities is immensely difficult. It would be cruel to destroy hope, but it would be equally cruel to pretend everything would be just fine. </p>
<p>“What are your thoughts if there aren’t any more chemo options?” I ask.</p>
<p>“I’m going to keep fighting. That is who I am. I’m going to keep getting stronger and beat this thing for my kids,” she replies.</p>
<p>“Good on you, Sharon, let’s focus on that. Some people might want to also discuss their plans if things don’t go so well. Is that something you might want to chat about?”</p>
<p>“No thanks, not for today. Today is a good day.”</p>
<hr>
<h2>Reflections</h2>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/185975/original/file-20170914-6553-3cckx5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/185975/original/file-20170914-6553-3cckx5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/185975/original/file-20170914-6553-3cckx5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/185975/original/file-20170914-6553-3cckx5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/185975/original/file-20170914-6553-3cckx5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/185975/original/file-20170914-6553-3cckx5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/185975/original/file-20170914-6553-3cckx5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/185975/original/file-20170914-6553-3cckx5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">These interactions occur in the shadow of our own mortality.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/search/photos/reflection?photo=fmy9rEz1Q5Y">Photo by Peter Clarkson on Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>These are interactions dealing with the most difficult of topics, our own mortality. The most important aspect of these conversations is understanding what that person wants, now and in the future. And, to be honest, I wouldn’t know what I would want were I in their shoes. </p>
<p>I can’t presume to know for them, nor should we as health professionals try. I don’t know what it is to struggle constantly for each breath, or to want another hour with my children. </p>
<p>We may be able to answer conclusively that further chemotherapy or cardiopulmonary resuscitation (CPR) <a href="http://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2301381">will not help Sharon</a>. But in her situation she might cling to any chance that would mean spending more time with her family. “Fighting” may be a <a href="https://search.proquest.com/openview/58173787e55bb1afd558ac63e7ec0ab7/1?pq-origsite=gscholar&cbl=38461">coping mechanism</a> for many, especially when they may see no way out.</p>
<p>Not everyone will feel comfortable talking about their future treatment plans like Keith. It’s important I allow Sharon to decide whether or not she wants to talk about a future where she dies, just as I shouldn’t necessarily dissuade Christos from smoking if it gives him pleasure. </p>
<p>Engaging in these conversations is the most important part of my job. Some people do not want to discuss what might be impending, while others may make decisions we might consider foolhardy. That is their choice. </p>
<hr>
<p><em>Read more in the series:</em></p>
<ul>
<li><p><em><a href="https://theconversation.com/what-is-palliative-care-a-patients-journey-through-the-system-82246">What is palliative care? A patient’s journey through the system</a></em></p></li>
<li><p><em><a href="https://theconversation.com/palliative-care-for-children-often-involves-treating-the-whole-family-84205">Palliative care for children often involves treating the whole family</a></em></p></li>
<li><p><em><a href="https://theconversation.com/looking-after-a-dying-loved-one-at-home-heres-what-you-need-to-know-83499">Looking after a dying loved one at home? Here’s what you need to know</a></em></p></li>
<li><p><em><a href="https://theconversation.com/five-common-myths-about-palliative-care-and-what-the-science-really-says-82248">Five common myths about palliative care and what the science really says</a></em></p></li>
</ul><img src="https://counter.theconversation.com/content/82247/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Matthew Grant does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
A palliative care doctor discusses his interactions with his patients: “I wouldn’t know what I would want were I in their shoes,” he says.
Matthew Grant, Research Fellow, Palliative Medicine Physician, Monash University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/82248
2017-11-01T18:56:06Z
2017-11-01T18:56:06Z
Five common myths about palliative care and what the science really says
<figure><img src="https://images.theconversation.com/files/191791/original/file-20171025-25565-1ssaqn5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many people hold narrow, often inaccurate and outdated views of what palliative care is.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p><em>This article is part of our series on <a href="https://theconversation.com/au/topics/demystifying-palliative-care-45213">demystifying palliative care</a>, where experts explain the process of end-of-life care in Australia.</em></p>
<hr>
<p>We may have heard it said, and in that curiously familiar tone, something along the lines of: “They’re having palliative care now.” And it’s almost as if the meaning of those words is so universally understood they need no further explanation. Most people simply assume they mean the person is now dying. </p>
<p>Yet, when a health professional suggests “palliative care” might be a useful addition to a patient’s care, they most likely mean something different. </p>
<p>So what is it the patient actually takes from the suggestion? We asked <a href="http://journals.sagepub.com/doi/full/10.1177/0269216317696420">this question</a> of people being treated for cancer in hospital, as well as their families. We wanted to explore people’s initial perceptions of palliative care when this term, or suggestion, was first raised with them in a clinical setting. </p>
<p>We found people held narrow, often inaccurate and outdated understandings of palliative care. Below are some of the common beliefs about palliative care, and what the science actually says. </p>
<h2>Myth 1. It’s just nursing care</h2>
<p>From its <a href="http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(07)70138-9/fulltext">inception, palliative care</a> has definitely always involved nurses. But by today’s standard there is much more to it than, for example, a nurse assisting a person with showering. </p>
<p>Palliative care is delivered by a <a href="http://palliativecare.org.au/understanding-palliative-care-parent-menu/understanding-palliative-care/">multidisciplinary team of experts</a>, such as social workers, counsellors, nurses and volunteers, who are trained to respond to the needs of people with serious illness. </p>
<p>For most patients, this will include consultation with a specialist palliative care doctor who has undergone additional medical training to become an expert in managing and treating the concerns that commonly arise from serious illness. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/192555/original/file-20171031-18689-1gjnzdm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/192555/original/file-20171031-18689-1gjnzdm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192555/original/file-20171031-18689-1gjnzdm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192555/original/file-20171031-18689-1gjnzdm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192555/original/file-20171031-18689-1gjnzdm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192555/original/file-20171031-18689-1gjnzdm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192555/original/file-20171031-18689-1gjnzdm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192555/original/file-20171031-18689-1gjnzdm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Palliative care has always involved nursing care, but it’s evolved to be a lot more than that.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<h2>Myth 2. It’s just about pain relief</h2>
<p>Palliative care is often called on to provide expert advice on optimal pain relief. But, just as frequently, palliative care is there to help manage <a href="http://www.thelancet.com/journals/lanres/article/PIIS2213-2600%2814%2970226-7/abstract">symptoms other than pain</a> that result from a serious illness or its treatment.</p>
<p>For example, a palliative care specialist has particular experience with medications and strategies that may help with problems such as nausea, breathlessness or constipation – which, left unattended, may reduce a person’s quality of life.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-palliative-care-a-patients-journey-through-the-system-82246">What is palliative care? A patient's journey through the system</a>
</strong>
</em>
</p>
<hr>
<h2>Myth 3. It’s a place to wait for death</h2>
<p>Palliative care does provide care for those at the end of life who may prefer to receive care or have needs best attended to in hospital or at a hospice. However, it is not just about end-of-life care. </p>
<p>Palliative care is available at any stage of serious illness. Palliative care can be helpful and is <a href="http://ascopubs.org/doi/full/10.1200/JCO.2016.70.1474">recommended early in an illness</a> to work alongside other medical teams to diagnose and treat the cause of symptoms, manage medications, help with communication or decision-making about treatment options, or provide family support. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/192559/original/file-20171031-18725-15o4wjs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/192559/original/file-20171031-18725-15o4wjs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192559/original/file-20171031-18725-15o4wjs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192559/original/file-20171031-18725-15o4wjs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192559/original/file-20171031-18725-15o4wjs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192559/original/file-20171031-18725-15o4wjs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192559/original/file-20171031-18725-15o4wjs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192559/original/file-20171031-18725-15o4wjs.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"></a>
<figcaption>
<span class="caption">Palliative care is not just about end-of-life care.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/W05ltFhe47U">Yevgeniy Gradov/Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<h2>Myth 4. Palliative care services are offered only in the hospital</h2>
<p>Palliative care does provide support to people in the hospital, but just as frequently palliative care services in the community provide care to people in their own homes. </p>
<p>Additionally, just as a person with heart disease may go to a clinic at the hospital to see a cardiologist, people with serious illness can attend an appointment to see a palliative care specialist.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/assisted-dying-is-one-thing-but-governments-must-ensure-palliative-care-is-available-to-all-who-need-it-86131">Assisted dying is one thing, but governments must ensure palliative care is available to all who need it</a>
</strong>
</em>
</p>
<hr>
<h2>Myth 5. It means depending on others for care</h2>
<p>The principal goal of palliative care is actually the opposite of dependency. It aims to support a person to maintain their independence and quality of life while living with serious illness.</p>
<p>This may mean providing equipment or strategies that may be needed to ensure a person can continue to live their life to the fullest.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/192560/original/file-20171031-18704-kin4pd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/192560/original/file-20171031-18704-kin4pd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192560/original/file-20171031-18704-kin4pd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192560/original/file-20171031-18704-kin4pd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192560/original/file-20171031-18704-kin4pd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192560/original/file-20171031-18704-kin4pd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192560/original/file-20171031-18704-kin4pd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192560/original/file-20171031-18704-kin4pd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The aim of palliative care is to help the person maintain independence.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/JzkgpML_8XI">Lukas Budimaier/Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<h2>What does the science say?</h2>
<p>There are now <a href="https://www.ncbi.nlm.nih.gov/pubmed/26231807">over ten high-quality, randomised clinical (human) trials</a>, conducted internationally, that demonstrate the benefits of accessing palliative care if faced with serious illness. </p>
<hr>
<p><strong><em>Read more: <a href="https://theconversation.com/randomised-control-trials-what-makes-them-the-gold-standard-in-medical-research-78913">Randomised control trials – what makes them the gold standard in medical research?</a></em></strong></p>
<hr>
<p>These studies, mostly conducted with people recently diagnosed with a serious cancer, compare the outcomes of people randomly allocated to receive either just best-practice cancer care or best-practice cancer care with palliative care. </p>
<p>Collectively, this science shows that people with a serious cancer who access palliative care soon after their diagnosis, alongside their recommended cancer treatments, have <a href="http://www.nejm.org/doi/full/10.1056/NEJMoa1000678">better outcomes</a>. </p>
<p>They report feeling better, with <a href="http://www.nejm.org/doi/full/10.1056/NEJMoa1000678">fewer symptoms</a> associated with their cancer and its treatment, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3657724/">improved mood</a> and better <a href="https://www.ncbi.nlm.nih.gov/pubmed/28029308">quality of life</a>. There is also growing evidence to show the people receiving palliative care <a href="http://ascopubs.org/doi/full/10.1200/JCO.2014.58.6362">live longer</a>.</p>
<p>So, next time we hear a friend is receiving palliative care, we should also remember the science and think of the possibilities, accomplishments and high-quality care they may receive. </p>
<hr>
<p><em>Read more in the series:</em></p>
<ul>
<li><p><em><a href="https://theconversation.com/its-not-all-about-death-conversations-with-patients-in-palliative-care-82247">It’s not all about death: conversations with patients in palliative care</a></em></p></li>
<li><p><em><a href="https://theconversation.com/what-is-palliative-care-a-patients-journey-through-the-system-82246">What is palliative care? A patient’s journey through the system</a></em></p></li>
<li><p><em><a href="https://theconversation.com/palliative-care-for-children-often-involves-treating-the-whole-family-84205">Palliative care for children often involves treating the whole family</a></em></p></li>
<li><p><em><a href="https://theconversation.com/looking-after-a-dying-loved-one-at-home-heres-what-you-need-to-know-83499">Looking after a dying loved one at home? Here’s what you need to know</a></em></p></li>
</ul><img src="https://counter.theconversation.com/content/82248/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anna Collins receives funding from the Victorian Cancer Agency and the Bethlehem Griffiths Research Foundation. </span></em></p>
Our study found people held narrow, often inaccurate and outdated understandings of palliative care.
Anna Collins, Research Fellow, Department of Medicine, The University of Melbourne
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/83499
2017-10-31T19:06:00Z
2017-10-31T19:06:00Z
Looking after a dying loved one at home? Here’s what you need to know
<figure><img src="https://images.theconversation.com/files/192540/original/file-20171031-18738-cxonuw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Caring can be very rewarding for both the carer and the patient.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p><em>This article is part of our series on <a href="https://theconversation.com/au/topics/demystifying-palliative-care-45213">demystifying palliative care</a>, where experts explain the process of end-of-life care in Australia.</em></p>
<hr>
<p>When someone dies at home, everyone in the family is affected. Looking after a relative who is at the end of their life can be enormously rewarding, but carers have many unmet information and support needs. This can take a toll on their physical and emotional health. </p>
<p>Here are some tips if you are looking after someone nearing the end of their life.</p>
<h2>1. Look after yourself</h2>
<p>Carers looking after someone with a life-threatening illness have <a href="https://www.ncbi.nlm.nih.gov/pubmed/18624779">higher levels of emotional distress</a>, including depression and anxiety, than the general population. It’s important you look after yourself. </p>
<p>Self-care might mean finding time to take a break from caring by signing up for yoga classes where calming <a href="https://www.ncbi.nlm.nih.gov/pubmed/25632044">breathing techniques</a> are practised, or seeking counselling or support groups. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/new-years-resolutions-how-to-get-your-stress-levels-in-check-34539">New year's resolutions: how to get your stress levels in check</a>
</strong>
</em>
</p>
<hr>
<p>Caring can be very rewarding for both the carer and the patient. Research shows caring can <a href="http://journals.sagepub.com/doi/abs/10.1177/1471301209103269">make people feel closer</a> to those they’re caring for. Carers often feel proud that they have been able to look after someone in their last years, months or days of life. </p>
<p>It can be a positive experience to think about the rewards of caring, like spending more time together or knowing you’re making a difference to a loved one at a difficult time.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/189949/original/file-20171012-31390-c13tmq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/189949/original/file-20171012-31390-c13tmq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/189949/original/file-20171012-31390-c13tmq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/189949/original/file-20171012-31390-c13tmq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/189949/original/file-20171012-31390-c13tmq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/189949/original/file-20171012-31390-c13tmq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/189949/original/file-20171012-31390-c13tmq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/189949/original/file-20171012-31390-c13tmq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">It’s important you look after yourself.</span>
</figcaption>
</figure>
<h2>2. Get informed</h2>
<p>Caring for a relative at the end of life is likely a new experience. Many carers are learning on the job and often don’t feel practically or emotionally prepared for the task. Research <a href="https://www.ncbi.nlm.nih.gov/pubmed/24292156">consistently shows</a> carers want to know how to safely carry out practical caring tasks, like moving the person in and out of bed, preparing suitable meals, and giving medication. </p>
<p>Emotional tasks might include listening to the patient’s worries and helping the patient write down their preferences for care and treatments in an advance care plan. When patients have an advance care plan, carers <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2844949/">report less stress</a> because key decisions have already been made and documented.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/take-control-over-the-end-of-your-life-what-you-need-to-know-about-advance-care-directives-62905">Take control over the end of your life: what you need to know about advance care directives</a>
</strong>
</em>
</p>
<hr>
<p>Palliative care services often have <a href="http://palcarefoundation.org.au/whats-new/carer-support-groups/">support groups</a> or <a href="http://www.southernhighlandnews.com.au/story/4665746/palliative-care-information-session/">information sessions</a>, which help carers feel more prepared and better informed. Such groups help meet carers’ information needs. They also <a href="http://www.sciencedirect.com/science/article/pii/S088539240900075X">increase self-efficacy</a> (the belief of being able to personally succeed in caring tasks). </p>
<p>Recently, distance learning has been offered to carers and <a href="https://www.ncbi.nlm.nih.gov/pubmed/28604233">evidence shows</a> this helps them feel more prepared to carry out their duties.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/189939/original/file-20171012-31375-rh5czp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/189939/original/file-20171012-31375-rh5czp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=402&fit=crop&dpr=1 600w, https://images.theconversation.com/files/189939/original/file-20171012-31375-rh5czp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=402&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/189939/original/file-20171012-31375-rh5czp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=402&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/189939/original/file-20171012-31375-rh5czp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=505&fit=crop&dpr=1 754w, https://images.theconversation.com/files/189939/original/file-20171012-31375-rh5czp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=505&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/189939/original/file-20171012-31375-rh5czp.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">A carer’s emotional tasks might include listening to the patient’s worries.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<h2>3. Ask for help</h2>
<p>Many current approaches to supporting people nearing the end of life involve working with whole communities. Known as <a href="http://www.compassionatecommunities.net.au/">compassionate communities</a>, these approaches are based on the concept it is not just up to an individual carer, or the health service, to look after people approaching the end of life. Support can be everyone’s responsibility, from pharmacists, librarians and teachers to employers and colleagues. </p>
<p>Apps, such as <a href="http://www.mentalhealthcarersaustralia.org.au/2015/01/28/care-for-me-app/">Care For Me</a>, and <a href="https://www.carecalendar.org/">websites</a> can help co-ordinate help from friends, family and the community. The website <a href="https://www.gathermycrew.org/">Gather My Crew</a> offers a way for carers to list tasks they need help with, to take some of the pressure off themselves.</p>
<h2>4. Talk about it</h2>
<p>When someone is critically ill or dying, family members often decide <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762643/">not to share their worries</a> with each other. Psychologists call this protective buffering. People do it to try to protect their family and friends from worrying more. </p>
<p>Although it is well-intended, protective buffering can make people feel less close. It’s OK to share worries with each other. Being able to talk about feelings means being able to deal together with the difficult things like pain or fear. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/189950/original/file-20171012-31440-1tr2dlz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/189950/original/file-20171012-31440-1tr2dlz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/189950/original/file-20171012-31440-1tr2dlz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/189950/original/file-20171012-31440-1tr2dlz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/189950/original/file-20171012-31440-1tr2dlz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/189950/original/file-20171012-31440-1tr2dlz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/189950/original/file-20171012-31440-1tr2dlz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/189950/original/file-20171012-31440-1tr2dlz.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"></a>
<figcaption>
<span class="caption">Talk about your anxieties.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>Using the “d” words (death and dying) can be difficult, and is an outright taboo in many cultures. Find language that suits you: be direct (death), or use metaphors (pass away) or less direct phrases (getting sicker) so that you can talk about worries together.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/passed-away-kicked-the-bucket-pushing-up-daisies-the-many-ways-we-dont-talk-about-death-77085">Passed away, kicked the bucket, pushing up daisies – the many ways we don't talk about death</a>
</strong>
</em>
</p>
<hr>
<h2>5. It’s OK to think about the future</h2>
<p>It’s hard to balance feeling positive and feeling sad about the person approaching the end of their life. Many family members and carers <a href="https://www.griefhealingblog.com/2012/12/grief-and-burden-of-guilt.html">say they feel guilty</a> for thinking about the future or making plans for after the person has died.</p>
<p>But <a href="http://journals.sagepub.com/doi/abs/10.2190/OM.61.4.b">research in bereavement</a> has shown it’s normal and healthy to move between focusing on the here and now, and on the life after the caring role ends. This might be reassuring if you’re the kind of person who doesn’t always want to face emotions head on – distracting yourself by thinking about the future is actually a natural and healthy thing to do.</p>
<hr>
<p><em>Read other articles in the series:</em></p>
<ul>
<li><p><em><a href="https://theconversation.com/what-is-palliative-care-a-patients-journey-through-the-system-82246">What is palliative care? A patient’s journey through the system</a></em></p></li>
<li><p><em><a href="https://theconversation.com/palliative-care-for-children-often-involves-treating-the-whole-family-84205">Palliative care for children often involves treating the whole family</a></em></p></li>
<li><p><em><a href="https://theconversation.com/its-not-all-about-death-conversations-with-patients-in-palliative-care-82247">It’s not all about death: conversations with patients in palliative care</a></em></p></li>
<li><p><em><a href="https://theconversation.com/five-common-myths-about-palliative-care-and-what-the-science-really-says-82248">Five common myths about palliative care and what the science really says</a></em></p></li>
</ul><img src="https://counter.theconversation.com/content/83499/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Liz Forbat received funding from ACT Department of Health for a carer education programme.
She is employed by Australian Catholic University and Calvary Health Care.</span></em></p>
Here are some tips if you are looking after someone who is nearing the end of their life.
Liz Forbat, Professor of Palliative Care, Australian Catholic University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/86196
2017-10-31T02:16:52Z
2017-10-31T02:16:52Z
How Lincoln’s embrace of embalming birthed the American funeral industry
<figure><img src="https://images.theconversation.com/files/192344/original/file-20171029-13315-3ggso9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">An illustrated depiction of a scene of Lincoln lying in state.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/internetarchivebookimages/14782342695/">Internet Archive Book Images</a></span></figcaption></figure><p>If you died 200 years ago in America, your family would wash and dress your body and place it in a bed surrounded by candles to dampen the smell of decomposition. </p>
<p>Your immediate family and friends would visit your house over the course of the next week, few needing to travel very far, paying their respects at your bedside. Before the body’s putrefaction advanced too far, the local carpenter would make a simple pine casket, and everyone would gather at the cemetery (or your own backyard, if you were a landowner) for a few words before <a href="http://walkingwithancestors.blogspot.com/2013/02/the-history-of-funeral-practices-in.html">returning you to the earth</a>. </p>
<p>You would be interred without any preservative chemicals, without being cosmetized with touch-ups like skin dyes, mouth formers or eye caps. No headstone, flowers or any of the other items we relate to a modern funeral. In essence, your demise would be respectful but without pomp. </p>
<p>Things <a href="https://theconversation.com/life-after-death-americans-are-embracing-new-ways-to-leave-their-remains-85657">have changed pretty substantially</a> since America’s early days as funeral rites have moved out of the house and into the funeral home. How did we get here and how do American traditions compare with typical practices in other countries? </p>
<p>In doing research for “Memory Picture,” an interactive website I’m building that explains the pros and cons of our interment options, I’ve discovered many intriguing details about how we memorialize death. One of the most fascinating is how the founding of the modern funeral industry can essentially be traced back to President Abraham Lincoln and his embrace of embalming. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192346/original/file-20171029-13311-1nu5e6m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192346/original/file-20171029-13311-1nu5e6m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=519&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192346/original/file-20171029-13311-1nu5e6m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=519&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192346/original/file-20171029-13311-1nu5e6m.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=519&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192346/original/file-20171029-13311-1nu5e6m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=652&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192346/original/file-20171029-13311-1nu5e6m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=652&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192346/original/file-20171029-13311-1nu5e6m.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=652&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A surgeon embalms a soldier’s body during the Civil War.</span>
<span class="attribution"><span class="source">Everett Historical/Shutterstock.com</span></span>
</figcaption>
</figure>
<h2>Embalming’s beginning</h2>
<p>The simple home funeral described above was the standard since the founding of the Republic, but the U.S. Civil War upended this tradition.</p>
<p>During the war, most bodies were left where they fell, decomposing in fields and trenches all over the South, or rolled into mass graves. Some wealthy northern families were willing to pay to have the bodies of deceased soldiers returned to them. But before the invention of refrigeration, this <a href="https://connecticuthistory.org/death-and-mourning-in-the-civil-war-era/">often became a mess</a>, as the heat and humidity would cause the body to decompose in a matter of a couple of days. </p>
<p>Updating an ancient preservation technique to solve this problem led to a seismic change in how we mourn the dead in America. Ancient Egyptian embalmings removed all internal organs and blood, leaving the body cavity to be filled with natural materials.</p>
<p>In 1838, the Frenchman <a href="https://en.wikipedia.org/wiki/Jean-Nicolas_Gannal">Jean Gannal</a> published “Histoire des Embaumements,” describing a process that kept the body more or less intact but replaced the body’s blood with a preservative – a technique now known as “arterial embalming.” The book was translated into English in 1840 and quickly became popular in America.</p>
<p>Catching wind of these medical advances, opportunistic Americans began performing rudimentary embalmings on the corpses of northern soldiers to preserve them for the train ride home. The most common technique involved replacing the body’s blood with arsenic and mercury (embalming eventually evolved to using variants of formaldehyde, which is still considered a carcinogen).</p>
<p>Results improved, but not on a grand scale. These were “field embalmings,” performed by nonprofessionals in makeshift tents set up next to the battlefield. Results were unpredictable, with issues involving circulation, length of preservation and overall consistency. <a href="https://americacomesalive.com/2010/08/03/wars-drive-advances/">It is estimated</a> that of the 600,000 that died in the war, 40,000 were embalmed. </p>
<p>Business was doing so well that the War Department was <a href="https://www.fredericknewspost.com/blogs/blogs_collection/guardian_of_the_artifacts/embalming-in-the-civil-war/article_6016b866-8b3c-555a-9220-0541a01a436f.html">forced to issue</a> General Order 39 to ensure only properly licensed embalmers could offer their services to mourners. But the technique was limited to the war – to make embalming part of a traditional American funeral would require Abraham Lincoln, who you might say was an early adopter. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192343/original/file-20171029-13378-pkzbh9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192343/original/file-20171029-13378-pkzbh9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192343/original/file-20171029-13378-pkzbh9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192343/original/file-20171029-13378-pkzbh9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192343/original/file-20171029-13378-pkzbh9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192343/original/file-20171029-13378-pkzbh9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192343/original/file-20171029-13378-pkzbh9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Crowds greet Lincoln’s body in 1865 as it’s carried through Buffalo, New York.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:Lincoln-Funeral-Cortege-Buffalo-and-Erie-County-Public-Library-Buffalo-NY.jpg">Buffalo Public Library</a></span>
</figcaption>
</figure>
<h2>Lincoln’s ‘lifelike’ death</h2>
<p>Many prominent Civil War officers were embalmed, including the first casualty of the war, <a href="https://en.wikipedia.org/wiki/Elmer_E._Ellsworth">Colonel Elmer Elsworth</a>, who was laid in state in the East Room of the White House at Lincoln’s request. </p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/192543/original/file-20171031-18683-z45v7h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/192543/original/file-20171031-18683-z45v7h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/192543/original/file-20171031-18683-z45v7h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=519&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192543/original/file-20171031-18683-z45v7h.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=519&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192543/original/file-20171031-18683-z45v7h.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=519&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192543/original/file-20171031-18683-z45v7h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=653&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192543/original/file-20171031-18683-z45v7h.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=653&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192543/original/file-20171031-18683-z45v7h.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=653&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">This image is an unknown artist’s conception of what Lincoln’s face looked like lying in state in New York’s City Hall based on an actual photograph taken by J. Gurney at the time of his death in 1865.</span>
<span class="attribution"><a class="source" href="https://www.lincolncollection.org/collection/creator-author/item/?cs=J&creator=J.+Gurney+%26+Son&item=45021">The Lincoln Collection</a></span>
</figcaption>
</figure>
<p>Upon the death of Lincoln’s 11-year-old son Willie in 1862, <a href="http://www.abrahamlincolnonline.org/lincoln/education/williedeath.htm">he had the boy’s body embalmed</a>. When the president was assassinated three years later, the same doctor embalmed Lincoln in preparation for a “funeral train” that paraded his body back to his final resting place in Springfield, Illinois. Nothing like this had happened for any president previously, or since, and the funeral procession left an indelible effect on those who attended it. Most visitors waited in line for hours to parade by Lincoln’s open casket, usually set up in a State House or rotunda after being unloaded from the train. </p>
<p>Lincoln’s appearance early in the trip was apparently so lifelike that mourners often reached out to touch his face, but the <a href="https://www.washingtonpost.com/news/morning-mix/wp/2015/04/17/the-grand-yet-ghoulish-odyssey-of-abraham-lincolns-corpse/?utm_term=.6c8c4749fe95">quality of the preservation faded</a> over the length of the three-week journey. William Cullen Bryant, editor of The New York Evening Post, <a href="https://www.washingtonpost.com/news/morning-mix/wp/2015/04/17/the-grand-yet-ghoulish-odyssey-of-abraham-lincolns-corpse/?utm_term=.7afcb1f10d7a">remarked</a> that after a lengthy viewing in Manhattan, “the genial, kindly face of Abraham Lincoln” became “a ghastly shadow.”</p>
<p>This was the first time most Americans saw an embalmed body, and it quickly became a national sensation. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192353/original/file-20171029-13309-edbqy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192353/original/file-20171029-13309-edbqy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=346&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192353/original/file-20171029-13309-edbqy8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=346&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192353/original/file-20171029-13309-edbqy8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=346&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192353/original/file-20171029-13309-edbqy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=434&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192353/original/file-20171029-13309-edbqy8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=434&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192353/original/file-20171029-13309-edbqy8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=434&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Mortuary science students simulate cleaning the fingernails of a peer standing in for a corpse. Death, once a family affair, is now handled by professionals.</span>
<span class="attribution"><span class="source">AP Photo/John Hayes</span></span>
</figcaption>
</figure>
<h2>Death becomes professionalized</h2>
<p>The public was painfully aware of death, with an average life expectancy of around 45 years (almost <a href="http://passionforthepast.blogspot.com/2011/08/average-life-expectancy-myth.html">entirely</a> due to an <a href="https://eh.net/encyclopedia/fertility-and-mortality-in-the-united-states/">infant mortality rate</a> higher than anywhere on Earth today). Seeing a corpse that exhibited lifelike color and less rigid features made a strong impression. </p>
<p>While we do not have statistics on the increase in embalmings during this time, there is ample <a href="https://connecticuthistory.org/death-and-mourning-in-the-civil-war-era/">evidence</a> that the Civil War had a profound effect on how Americans treated death. Victorian mourning traditions <a href="https://www.encyclopediavirginia.org/Mourning_During_the_Civil_War">gave way</a> to funeral homes and hearses. Local carpenters and taxi services began offering funerary services, and undertakers earned “certificates of training” from <a href="https://americacomesalive.com/2010/08/03/wars-drive-advances/">embalming fluid salesmen</a>. Eventually, every American could be embalmed, as most are today. </p>
<p></p><hr><p></p>
<p><iframe id="2X6hK" class="tc-infographic-datawrapper" src="https://datawrapper.dwcdn.net/2X6hK/1/" height="400px" width="100%" style="border: none" frameborder="0"></iframe></p>
<p></p><hr><p></p>
<p>There was one potent caveat: Families could no longer bury their own. More was needed than the assistance of friends and family to inter a corpse. Death was becoming professionalized, its mechanisms increasingly out of the hands of typical Americans. And as a result, the cost of burying the dead soared. The median cost of a funeral and burial, including a vault to enclose the casket, <a href="http://www.nfda.org/news/media-center/nfda-news-releases/id/840/nfda-releases-results-of-2015-member-general-price-list-survey">reached US$8,508</a> in 2014, up from about $2,700 three decades ago. </p>
<p>Thus was born the American funeral industry, with embalming as its cornerstone, as families ceded control of their loved ones’ bodies to a funeral director. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192350/original/file-20171029-13367-7azapw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192350/original/file-20171029-13367-7azapw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=337&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192350/original/file-20171029-13367-7azapw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=337&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192350/original/file-20171029-13367-7azapw.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=337&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192350/original/file-20171029-13367-7azapw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192350/original/file-20171029-13367-7azapw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192350/original/file-20171029-13367-7azapw.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Countries in Europe are struggling to deal with overcrowding in cemeteries.</span>
<span class="attribution"><span class="source">pxl.store/Shutterstock.com</span></span>
</figcaption>
</figure>
<h2>Differences with other cultures</h2>
<p>When people talk of a “traditional” American funeral today, they usually refer to a cosmetized, embalmed body, presented in a viewing before being interred in a cemetery. </p>
<p>This unique approach to interment is unlike death rites anywhere else in the world, and no other country in the world embalms their dead at a rate even approaching that of the U.S. Funeral tradition involves the intersection of culture, law and religion, a recipe that makes for very different outcomes across the globe. </p>
<p>In Japan, <a href="https://www.economist.com/blogs/graphicdetail/2012/10/daily-chart-16">nearly everyone is cremated</a>. The cultural traditions bound to the ceremony, which include family members <a href="https://en.wikipedia.org/wiki/Japanese_funeral">passing cremated bone remains to each other using chopsticks</a>, predate the Civil War. </p>
<p>In Germany, where cremations are also <a href="https://www.angloinfo.com/how-to/germany/healthcare/death-dying">increasingly popular</a>, the law requires that bodies be interred in the ground – even cremated remains –including the purchase of a coffin and a land plot. This has led to “<a href="https://www.german-way.com/history-and-culture/germany/the-german-way-of-death-funerals/">corpse tourism</a>,” in which cremation is outsourced to a neighboring country and the body shipped back to Germany.</p>
<p>Other European countries struggle to deal with limited land resources for burial, with countries such as Greece requiring that <a href="http://www.slate.com/articles/life/faithbased/2011/02/rentagrave.html">graves are “recycled”</a> every three years. </p>
<p>In Tunisia, as with all majority Muslim countries, nearly everyone is interred in the ground within 24 hours, in a cloth shroud and without chemical embalming. This is in accordance with Islamic scripture. It also bears close resemblance to the original interment of Americans before the Civil War. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192351/original/file-20171029-13309-1usxia3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192351/original/file-20171029-13309-1usxia3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192351/original/file-20171029-13309-1usxia3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192351/original/file-20171029-13309-1usxia3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192351/original/file-20171029-13309-1usxia3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192351/original/file-20171029-13309-1usxia3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192351/original/file-20171029-13309-1usxia3.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">It’s never too soon to prepare for your final resting place.</span>
<span class="attribution"><span class="source">Martin Christopher Parker/Shutterstock.com</span></span>
</figcaption>
</figure>
<h2>Time to make plans</h2>
<p>While American funerals are typically more expensive than in other countries, U.S. citizens <a href="https://theconversation.com/life-after-death-americans-are-embracing-new-ways-to-leave-their-remains-85657">enjoy many more options</a> – and can even choose a simple Muslim-style interment. The key thing is to plan ahead by thinking critically about how you want yourself or your loved ones interred. </p>
<p>If you were to die today, chances are you would meet your demise at the hospital. Your family would be asked if they had an “advanced directive” regarding “disposition of remains.” In the absence of clear guidelines, your next of kin would most likely sign away the rights to your body to a local funeral parlor that will encourage them to have the body embalmed for a viewing and burial. </p>
<p>You would be interred with the blood and organs of your body replaced with carcinogenic preservative liquids, heavily cosmetized to hide the signs of the the embalming surgery that rendered you this way. Your embalmed body would be placed in an airtight casket, itself placed inside a concrete vault in the ground.</p>
<p>And you may wish for it to be that way. But if you prefer anything else, you must make your wishes known. To say “I don’t care, I’ll be dead” places an undue burden on your family, which is already mourning your loss.</p><img src="https://counter.theconversation.com/content/86196/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Brian Walsh 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>
Dying in America 200 years ago was a simply family affair, devoid of pomp. The US Civil War and Abraham Lincoln’s embrace of embalming changed everything.
Brian Walsh, Assistant Professor of Communications, Elon 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/82246
2017-10-29T19:11:20Z
2017-10-29T19:11:20Z
What is palliative care? A patient’s journey through the system
<figure><img src="https://images.theconversation.com/files/191937/original/file-20171026-28030-prtq4n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Palliative care involves a team of specialised health professionals who provide an extra layer of support to the person and their family.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p><em>This article is part of our series on <a href="https://theconversation.com/au/topics/demystifying-palliative-care-45213">demystifying palliative care</a>, where experts explain the process of end-of-life care in Australia.</em></p>
<hr>
<p>A diagnosis of a serious illness has a multitude of consequences. There may be significant symptoms related to the disease such as pain, breathing difficulties, nausea, fatigue and weakness. </p>
<p>Such illnesses often limit a person’s ability to do the shopping and chores, attend the many medical appointments required, and can potentially lead to social isolation.</p>
<h2>What is palliative care?</h2>
<p>Rebecca lived with her husband, Rob, and six-year-old son, Jack. She was 34 when she met the palliative care doctor, after being diagnosed with a particularly aggressive lung cancer. She had undergone extensive surgery and was due to have radiotherapy and chemotherapy. She was struggling with some ongoing pain after her operation. </p>
<p>Her cancer doctor suggested she see the palliative care team to help manage her pain so she could cope better with the next steps of her cancer treatment. </p>
<p>According to the <a href="http://www.who.int/cancer/palliative/definition/en/">World Health Organisation</a>, palliative care</p>
<blockquote>
<p>improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.</p>
</blockquote>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/191949/original/file-20171026-28053-1jws29v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/191949/original/file-20171026-28053-1jws29v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/191949/original/file-20171026-28053-1jws29v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=899&fit=crop&dpr=1 600w, https://images.theconversation.com/files/191949/original/file-20171026-28053-1jws29v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=899&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/191949/original/file-20171026-28053-1jws29v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=899&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/191949/original/file-20171026-28053-1jws29v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1130&fit=crop&dpr=1 754w, https://images.theconversation.com/files/191949/original/file-20171026-28053-1jws29v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1130&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/191949/original/file-20171026-28053-1jws29v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1130&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Palliative care aims to improve a person’s quality of life.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/z-ojMgg99nA">Suhyeon Choi/Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>In Rebecca’s case, palliative care was recommended for the additional issues she had associated with her treatment. Palliative care involves a team of doctors, nurses, allied health and other volunteers who work together to provide an extra layer of support to the person and their family.</p>
<p>Palliative care teams are commonly involved with illnesses such as heart, lung or kidney disease, cancer or advanced dementia. Involving palliative care allows for better control of symptoms and an <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5226373/">improved sense</a> of quality of life. It also helps the family of the person who is ill. With better symptom control and support, this frequently translates to less time spent in hospital. </p>
<p>A <a href="http://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678">number of studies</a> have even shown early involvement of palliative care can <a href="https://www.ncbi.nlm.nih.gov/pubmed/25822284">lead to improved survival</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/palliative-care-should-be-embraced-not-feared-59162">Palliative care should be embraced, not feared</a>
</strong>
</em>
</p>
<hr>
<h2>Palliative care doctors</h2>
<p>Rebecca attended an appointment to meet one of the palliative care doctors at the cancer centre. The doctor explained his expertise in pain control and Rebecca felt comfortable with his proposed management plan. </p>
<p>Rebecca’s palliative care doctor changed her medications slightly to address her pain. They also talked about her diagnosis, how it had thrown her life upside down and the treatment planned. </p>
<p>Rebecca spoke of being determined, scared and keen to hold a sense of routine for Jack, who was just starting school. Over the next few months, Rebecca saw her palliative care doctor once or twice just to check in. But mostly she was busy with her cancer treatments and her pain was now pretty stable.</p>
<p>A few months later Rebecca rang the hospital asking to see the palliative care doctor because her pain seemed to be getting worse. On assessment, this pain was different, with a number of concerning features. Together with Rebecca’s oncologist, more scans were ordered. These revealed her cancer had returned and spread to many parts of her body.</p>
<p>Rebecca’s palliative care doctor altered the pain medications, including prescribing a drug that targets nerve pain. The medications were slowly increased over time to reduce the chance of side effects such as drowsiness. After two weeks, Rebecca felt the pain was well controlled, and she was back doing the things she wanted to focus on at home.</p>
<p>Palliative care doctors are <a href="http://onlinelibrary.wiley.com/doi/10.1111/imj.13520/full">specialist physicians</a> skilled in treating symptoms associated with serious illnesses such as pain, nausea, fatigue and appetite problems. A key component of their role is facilitating difficult discussions about prognosis, stopping various treatments and <a href="http://onlinelibrary.wiley.com/doi/10.1002/nur.21563/full">exploring the medical decisions</a> a person would want at different stages of their illness. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/191946/original/file-20171026-28045-7x5js0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/191946/original/file-20171026-28045-7x5js0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/191946/original/file-20171026-28045-7x5js0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/191946/original/file-20171026-28045-7x5js0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/191946/original/file-20171026-28045-7x5js0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/191946/original/file-20171026-28045-7x5js0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/191946/original/file-20171026-28045-7x5js0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/191946/original/file-20171026-28045-7x5js0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Rebecca mostly wanted to be a good mother and maintain routine.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>Palliative care experts work closely with <a href="http://onlinelibrary.wiley.com/doi/10.1111/imj.13520/full">other health professionals</a>, such as oncologists, cardiologists, psychologists and social workers, to address all the effects of a serious illness. This may include ordering investigations and scans, through to organising community services (such as personal carers) or walking aids, and providing support for family and carers.</p>
<h2>Guidance through difficulties</h2>
<p>However, one thing after another was happening for Rebecca with her cancer. She was admitted to hospital at least twice as a result of complications from her cancer or its treatment. She felt like she was not getting much time to draw breath between each event.</p>
<p>Rebecca knew her palliative care doctor pretty well by now. They had some conversations that helped focus how Rebecca wanted to spend her energies. When her palliative care doctor asked, given all that was happening, what was important for her, Rebecca had two hopes. </p>
<p>She still wanted to fight and stay hopeful of beating or, at least, holding her cancer at bay. And, after some thought, Rebecca quietly offered that even more important was being a great mum. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/191940/original/file-20171026-28053-g2quig.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/191940/original/file-20171026-28053-g2quig.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/191940/original/file-20171026-28053-g2quig.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/191940/original/file-20171026-28053-g2quig.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/191940/original/file-20171026-28053-g2quig.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/191940/original/file-20171026-28053-g2quig.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/191940/original/file-20171026-28053-g2quig.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/191940/original/file-20171026-28053-g2quig.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"></a>
<figcaption>
<span class="caption">Palliative care specialists are trained to have difficult conversations about prognosis.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/2FrX56QL7P8">Alexander Shustov/Unsplash</a></span>
</figcaption>
</figure>
<p>The next couple of months were pretty stormy. Rebecca was feeling much weaker and was increasingly spending time on the couch or in bed. She was clearly nearing the final part of her life.</p>
<p>At her wish, Rebecca decided to try yet another new form of chemotherapy, but also spent some time talking to her palliative care doctor and formulating a clear plan that she wanted to be home with Jack. If or when further problems came, she wanted to remain at home. She had already been linked in to community palliative care supports some time earlier, so knew these nurses well and trusted them. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/take-control-over-the-end-of-your-life-what-you-need-to-know-about-advance-care-directives-62905">Take control over the end of your life: what you need to know about advance care directives</a>
</strong>
</em>
</p>
<hr>
<p>One of the nurses from the community palliative care team offered their support in helping talk to Jack about what was going on for his mum. Rebecca felt relieved knowing there was someone to help with this. </p>
<h2>Palliative care services at the end of life</h2>
<p>As things worsened, the palliative care nurses were visiting her every day and, recognising the change, they contacted the palliative care doctor, who also went to see Rebecca at home. </p>
<p>It was a cold, rainy day. The house was warm and Rebecca was in a bed set up by the glass windows in the living area. Her husband Rob and two sisters were sitting nearby at the kitchen bench having a cup of tea. Her cat was lying close beside her. Jack was leaning up against his mum’s bed doing some colouring.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/191948/original/file-20171026-28039-aact0t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/191948/original/file-20171026-28039-aact0t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/191948/original/file-20171026-28039-aact0t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/191948/original/file-20171026-28039-aact0t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/191948/original/file-20171026-28039-aact0t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/191948/original/file-20171026-28039-aact0t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/191948/original/file-20171026-28039-aact0t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/191948/original/file-20171026-28039-aact0t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Most people want to die at home.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/ZuL8zFse-KY">Linh Nguyen/Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>The palliative care doctor didn’t stay long. Rebecca was mostly sleeping and only waking for moments every now and again. They spoke just a little – she seemed comfortable. Rebecca died a few days later. According to the nurses, she became sleepier, until she didn’t wake at all in her last 12 hours.</p>
<p>Palliative care is provided in many settings. This may include hospital or private clinics, as a medical team in the hospital, in a palliative care unit or hospice, or in the community. GPs are often an integral component of this team.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/assisted-dying-is-one-thing-but-governments-must-ensure-palliative-care-is-available-to-all-who-need-it-86131">Assisted dying is one thing, but governments must ensure palliative care is available to all who need it</a>
</strong>
</em>
</p>
<hr>
<p>Community teams involve specialist nurses, doctors and other health professionals, and visit patients’ homes for regular assessment and care. This might mean providing equipment such as a comfortable hospital bed, visiting doctors and nurses to oversee medications and ensure a person experiences minimal pain, or <a href="http://palliativecare.org.au/">talking with children about death</a>. </p>
<p>These services often provide 24-hour phone support or urgent assessment in the home as things pop up or possible concerns arise. Unfortunately, <a href="https://www.pc.gov.au/inquiries/current/human-services/reforms/draft/human-services-reforms-draft-overview.pdf">access to these services and the expertise available</a> are hugely variable, especially in rural and regional areas.</p>
<p>Between 60-70% of Australians wish to die at home, <a href="https://grattan.edu.au/wp-content/uploads/2014/09/815-dying-well.pdf">yet only 14% do</a>, with 54% of people dying in hospitals. Having discussions in advance about a person’s priorities if their health worsens, and the care people might want including where they would like to be, may enable planning for these eventualities.</p>
<p>While these discussions are painful and frequently difficult, with clear plans in place, like Rebecca was able to make, palliative care helps people stay at home and, for many, to die at home.</p>
<hr>
<p><em>Read more in the series:</em></p>
<ul>
<li><p><em><a href="https://theconversation.com/its-not-all-about-death-conversations-with-patients-in-palliative-care-82247">It’s not all about death: conversations with patients in palliative care</a></em></p></li>
<li><p><em><a href="https://theconversation.com/palliative-care-for-children-often-involves-treating-the-whole-family-84205">Palliative care for children often involves treating the whole family</a></em></p></li>
<li><p><em><a href="https://theconversation.com/looking-after-a-dying-loved-one-at-home-heres-what-you-need-to-know-83499">Looking after a dying loved one at home? Here’s what you need to know</a></em></p></li>
<li><p><em><a href="https://theconversation.com/five-common-myths-about-palliative-care-and-what-the-science-really-says-82248">Five common myths about palliative care and what the science really says</a></em></p></li>
</ul><img src="https://counter.theconversation.com/content/82246/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anna Collins receives research funding from Victorian Cancer Agency and the Bethlehem Griffiths Research Foundation. </span></em></p><p class="fine-print"><em><span>Jennifer Philip receives funding from Victorian Cancer Agency, Bethlehem Griffiths Research Foundation </span></em></p><p class="fine-print"><em><span>Matthew Grant does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
When a person has a serious illness, palliative care aims to improve that person’s quality of life.
Matthew Grant, Research Fellow, Palliative Medicine Physician, Monash University
Anna Collins, Research Fellow, Department of Medicine, The University of Melbourne
Jennifer Philip, Professor, VCCC Chair of Palliative Medicine, The University of Melbourne
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/85657
2017-10-27T10:21:14Z
2017-10-27T10:21:14Z
Life after death: Americans are embracing new ways to leave their remains
<figure><img src="https://images.theconversation.com/files/192140/original/file-20171026-13298-1evqmha.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">'Green burials' that use biodegradable coffins or lessen the environmental impact in other ways are on the rise. </span> <span class="attribution"><span class="source">AP Photo/Michael Hill</span></span></figcaption></figure><p>What do you want to happen to your remains after you die? </p>
<p>For the past century, most Americans have accepted a limited set of options without question. And discussions of death and funeral plans <a href="https://www.theatlantic.com/health/archive/2015/05/what-good-is-thinking-about-death/394151/">have been taboo</a>.</p>
<p>That is changing. As a scholar of funeral and cemetery law, I’ve discovered that Americans are becoming more willing to have a conversation about their own mortality and what comes next and embrace new funeral and burial practices. </p>
<p>Baby boomers are insisting upon more control over their funeral and disposition so that their choices after death match their values in life. And businesses are following suit, offering new ways to memorialize and dispose of the dead.</p>
<p>While some options such as <a href="http://www.talkdeath.com/but-why-cant-i-have-a-tibetan-sky-burial/">Tibetan sky burial</a> – leaving human remains to be picked clean by vultures – and <a href="https://www.youtube.com/watch?v=FQJOs8rm6xM">“Viking” burial via flaming boat</a> – familiar to “Game of Thrones” fans – remain off limits in the U.S., laws are changing to allow a growing variety of practices.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/reSR6jTZCc8?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The funeral pyre hasn’t yet received approval for use in the U.S.</span></figcaption>
</figure>
<h2>‘The American Way of Death’</h2>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/192138/original/file-20171026-13311-dk00tz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/192138/original/file-20171026-13311-dk00tz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/192138/original/file-20171026-13311-dk00tz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=533&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192138/original/file-20171026-13311-dk00tz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=533&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192138/original/file-20171026-13311-dk00tz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=533&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192138/original/file-20171026-13311-dk00tz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=670&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192138/original/file-20171026-13311-dk00tz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=670&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192138/original/file-20171026-13311-dk00tz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=670&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Author, journalist and civil rights activist Jessica Mitford is shown during an interview at the Boston Public Garden in Boston, Massachusetts, in 1979.</span>
<span class="attribution"><span class="source">(AP Photo/Liss</span></span>
</figcaption>
</figure>
<p>In 1963, English journalist and activist <a href="http://www.bbc.com/future/story/20160721-how-jessica-mitford-changed-our-ideas-about-death">Jessica Mitford</a> published “<a href="https://www.laphamsquarterly.org/death/fond-farewells">The American Way of Death</a>,” in which she described the leading method of disposing of human remains in the United States, still in use today. </p>
<p>She wrote that human remains are temporarily preserved by replacing blood with a formaldehyde-based embalming fluid shortly after death, placed in a decorative wood or metal casket, displayed to family and friends at the funeral home and buried within a concrete or steel vault in a grave, perpetually dedicated and marked with a tombstone. </p>
<p>Mitford called this “absolutely weird” and argued that it had been invented by the American funeral industry, which emerged at the turn of the 20th century. As she <a href="http://www.theatlantic.com/magazine/archive/1963/06/the-undertakers-racket/305318/">wrote in The Atlantic</a>:</p>
<blockquote>
<p>“Foreigners are astonished to learn that almost all Americans are embalmed and publicly displayed after death. The practice is unheard of outside the United States and Canada.” </p>
</blockquote>
<p>Nearly all Americans who died from the 1930s, when embalming became well-established, through the 1990s were disposed of in this manner. </p>
<p>And it’s neither cheap or good for the environment. The <a href="http://www.nfda.org/news/media-center/nfda-news-releases/id/840/nfda-releases-results-of-2015-member-general-price-list-survey">median cost of a funeral and burial</a>, including a vault to enclose the casket, was US$8,508 in 2014. Including the cost of the burial plot, the fee for opening and closing the grave and the tombstone easily brings the total cost to $11,000 or more. </p>
<p>This method also consumes a great deal of natural resources. Each year, <a href="http://www.talkdeath.com/environmental-impact-funerals-infographic/">we bury</a> 800,000 gallons of formaldehyde-based embalming fluid, 115 million tons of steel, 2.3 billion tons of concrete and enough wood to build 4.6 million single-family homes.</p>
<p>Mitford’s book <a href="http://www.nytimes.com/1996/07/24/arts/jessica-mitford-incisive-critic-american-ways-britishupbringing-dies-78.html">influenced generations of Americans</a>, beginning with the baby boomers, to question this type of funeral and burial. As a result, demand for alternatives such as home funerals and green burials have increased significantly. The most common reasons cited are a desire to connect with and honor their loved ones in a more meaningful way, and interest in lower-cost, less environmentally damaging choices.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192137/original/file-20171026-13331-1oyles2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192137/original/file-20171026-13331-1oyles2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192137/original/file-20171026-13331-1oyles2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192137/original/file-20171026-13331-1oyles2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192137/original/file-20171026-13331-1oyles2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192137/original/file-20171026-13331-1oyles2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192137/original/file-20171026-13331-1oyles2.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">Traditional funerals are becoming less common as more Americans look for cheaper, greener options.</span>
<span class="attribution"><span class="source">Alzbeta/Shutterstock.com</span></span>
</figcaption>
</figure>
<h2>The rise of cremation</h2>
<p>The most radical change to how Americans handle their remains has been the rising popularity of cremation by fire. Cremation is less expensive than burial and, although it consumes fossil fuels, is widely perceived to be better for the environment than burial in a casket and vault. </p>
<p>Although cremation became legal in a handful of states in the 1870s and 1880s, its usage in the U.S. remained in single digits for another century. After steadily rising since the 1980s, cremation was the disposition method of choice for <a href="https://www.deathcarestudies.com/2017/09/cremation-rate-update/">nearly half</a> of all deaths in the U.S. in 2015. Cremation is most popular in urban areas, where the cost of burial can be quite high, in states with a lot of people born in other ones and among those who do not identify with a particular religious faith. </p>
<p>Residents of western states like Nevada, Washington and Oregon opt for cremation the most, with rates as high as 76 percent. Mississippi, Alabama and Kentucky have the lowest rates, at less than a quarter of all burials. The National Funeral Directors Association <a href="https://www.deathcarestudies.com/2017/09/cremation-rate-update/">projects</a> that by 2030 the nationwide cremation rate will reach 71 percent. </p>
<p>Cremation’s dramatic rise is part of a huge shift in American funerary practices away from burial and the ritual of embalming the dead, which is not required by law in any state but which most funeral homes require in order to have a visitation. In 2017, a survey of the personal preferences of Americans aged 40 and over <a href="http://www.nfda.org/news/media-center/nfda-news-releases/id/2419/nfda-consumer-survey-funeral-planning-not-a-priority-for-americans">found</a> that more than half preferred cremation. <a href="https://www.deathcarestudies.com/2017/10/gleaned-from-the-2017-nfda-consumer-awareness-and-preferences-survey-part-1-funeral-consumers-need-education/">Only 14 percent</a> of those respondents said they would like to have a full funeral service with viewing and visitation prior to cremation, down from 27 percent as recently as 2015. </p>
<p>Part of the reason for that shift is cost. In 2014, the <a href="http://www.nfda.org/news/media-center/nfda-news-releases/id/840/nfda-releases-results-of-2015-member-general-price-list-survey">median cost of a funeral with viewing and cremation</a> was $6,078. In contrast, a “direct cremation,” which does not include embalming or a viewing, <a href="https://funerals.org/?consumers=cremation-explained-answers-frequently-asked-questions">can typically be purchased for $700 to $1,200</a>. </p>
<p>Cremated remains can be buried in a cemetery or stored in an urn on the mantle, but businesses also offer a <a href="http://www.businessinsider.com/13-ways-to-use-your-ashes-to-become-something-awesome-2016-6?r=UK&IR=T/#-3">bewildering range of options</a> for incorporating ashes into objects like glass paperweights, jewelry and even vinyl records.</p>
<p>And while <a href="https://www.deathcarestudies.com/2017/10/gleaned-from-the-2017-nfda-consumer-awareness-and-preferences-survey-part-1-funeral-consumers-need-education/">40 percent of respondents</a> to the 2017 survey associate a cremation with a memorial service, Americans are increasingly holding those services at religious institutions and nontraditional locations like parks, museums and even at home. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192136/original/file-20171026-13378-6p9ybu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192136/original/file-20171026-13378-6p9ybu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=397&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192136/original/file-20171026-13378-6p9ybu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=397&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192136/original/file-20171026-13378-6p9ybu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=397&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192136/original/file-20171026-13378-6p9ybu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=498&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192136/original/file-20171026-13378-6p9ybu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=498&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192136/original/file-20171026-13378-6p9ybu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=498&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">As the number of cremations has soared, so too has the variety of urns. This one sold at a mall in Glendale, California, features a Dodgers baseball theme.</span>
<span class="attribution"><span class="source">AP Photo/Damian Dovarganes</span></span>
</figcaption>
</figure>
<h2>Going green</h2>
<p>Another trend is finding greener alternatives to both the traditional burial and cremation. </p>
<p>The 2017 survey found that 54 percent of respondents were interested in green options. Compare this with a <a href="https://www.aarp.org/money/estate-planning/info-2007/funeral_survey.html">2007 survey of those aged 50 or higher</a> by AARP which found that only 21 percent were interested in a more environmentally friendly burial. </p>
<p>One example of this is a new method of disposing of human remains called <a href="https://www.nytimes.com/2017/10/19/business/flameless-cremation.html">alkaline hydrolysis</a>, which involves using water and a salt-based solution to dissolve human remains. Often referred as “water cremation,” it’s <a href="https://www.youtube.com/watch?v=SbQTACCNgcg">preferred by many as a greener alternative</a> to cremation by fire, which consumes fossil fuels. Most funeral homes that offer both methods of cremation charge the same price.</p>
<p>The alkaline hydrolysis process results in a sterile liquid and bone fragments that are reduced to “ash” and returned to the family. Although most Americans are unfamiliar with the process, funeral directors that have adopted it generally report that families prefer it to cremation by fire. <a href="http://www.newsweek.com/eco-friendly-californians-can-have-dead-bodies-liquefied-burial-method-689055">California recently became the 15th state</a> to legalize it.</p>
<h2>Going home</h2>
<p>A rising number of families are also interested in so-called “<a href="https://www.smithsonianmag.com/arts-culture/the-surprising-satisfactions-of-a-home-funeral-53172008/">home funerals</a>,” in which the remains are cleaned and prepared for disposition at home by the family, religious community or friends. Home funerals are followed by cremation, or burial in a family cemetery, a traditional cemetery or a green cemetery.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/192134/original/file-20171026-13309-ctqjdk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/192134/original/file-20171026-13309-ctqjdk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/192134/original/file-20171026-13309-ctqjdk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=800&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192134/original/file-20171026-13309-ctqjdk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=800&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192134/original/file-20171026-13309-ctqjdk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=800&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192134/original/file-20171026-13309-ctqjdk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1005&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192134/original/file-20171026-13309-ctqjdk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1005&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192134/original/file-20171026-13309-ctqjdk.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"></a>
<figcaption>
<span class="caption">More Americans are being buried in natural burial grounds, such as this one in Rhinebeck, New York.</span>
<span class="attribution"><span class="source">AP Photo/Michael Hill</span></span>
</figcaption>
</figure>
<p>Assisted by <a href="https://www.nytimes.com/2014/03/13/fashion/baby-boomers-are-drawn-to-green-and-eco-friendly-funerals.html?_r=0">funeral directors</a> or educated by <a href="http://homefuneralalliance.org/">home funeral guides</a>, families that choose home funerals are returning to a set of practices that <a href="https://funerals.org/product/final-rights-reclaiming-the-american-way-of-death/">predate the modern funeral industry.</a> </p>
<p>Proponents say that caring for remains at home is a better way of honoring the relationship between the living and the dead. Home funerals are also seen as more environmentally friendly since remains are temporarily preserved through the use of dry ice rather than formaldehyde-based embalming fluid. </p>
<p>The <a href="https://greenburialcouncil.org/">Green Burial Council</a> says rejecting embalming is one way to go green. Another is to choose to have remains interred or cremated in a fabric shroud or biodegradable casket rather than a casket made from nonsustainable hardwoods or metal. The council promotes standards for green funeral products and certifies green funeral homes and burial grounds. More than 300 providers are currently certified in 41 states and six Canadian provinces. </p>
<p>For example, <a href="http://sleepyhollowcemetery.org/burial-options/natural-burial-grounds/">Sleepy Hollow Cemetery,</a> the historic New York cemetery made famous by Washington Irving, is a certified “hybrid” cemetery because it has reserved a portion of its grounds for green burials: no embalming, no vaults and no caskets unless they are biodegradable – the body often goes straight into the ground with just a simple wrapping.</p>
<p>Clearly Americans are pushing the “traditional” boundaries of how to memorialize their loved ones and dispose of their remains. While I wouldn’t hold out hope that Americans will be able to choose Viking- or Tibetan-style burials anytime soon, you never know.</p><img src="https://counter.theconversation.com/content/85657/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Tanya D. Marsh 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>
Although ‘Game of Thrones’ -style funeral pyres are still out of bounds, Americans are increasingly turning to cheaper, greener and more meaningful ways to dispose of their loved ones’ bodies.
Tanya D. Marsh, Professor of Law, Wake Forest University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/81401
2017-07-21T06:53:52Z
2017-07-21T06:53:52Z
Victoria may soon have assisted dying laws for terminally ill patients
<p>An independent group of experts set up by the Victorian government has today delivered its <a href="https://www2.health.vic.gov.au/about/health-strategies/voluntary-assisted-dying-bill">final report</a> outlining 66 recommendations for how voluntary assisted dying would work in the state.</p>
<p>Chaired by former head of the Australian Medical Association, Brian Owler, the Ministerial Advisory Panel’s role was to work out how legislation should be drafted to allow terminally ill people to receive assistance to die. The panel based its report on the recommendations of the <a href="http://www.parliament.vic.gov.au/lsic/inquiry/402">Parliamentary committee’s Inquiry into end of life choices</a> in December 2016.</p>
<p>Legislation giving effect to the report is likely to be tabled in the Victorian Parliament <a href="http://www.theage.com.au/victoria/assisted-dying-new-laws-could-see-victorians-get-lethal-medicine-within-10-days-20170720-gxfbcn.html">within a month</a>.</p>
<h2>Who does the law cover?</h2>
<p>At the heart of debates about assisted dying are eligibility criteria – who can get assistance to die and who cannot. The panel’s recommendations are broadly consistent with the report of the parliamentary committee. Access is allowed for an adult who can make their own decisions, is terminally ill and their suffering cannot be relieved. They must also be a resident of Victoria.</p>
<p>But the panel widens the committee’s earlier recommendation that a person must be “at the end of life (final weeks or months of life)” to be granted their request. Instead, the current report states the “incurable disease, illness or medical condition” must be expected to cause death in no later than 12 months. </p>
<p>While we agree eligibility should be based on a terminal illness, we don’t favour time limits as they are arbitrary and difficult to accurately predict. They can also lead to people taking harmful steps to fall inside them, such as starving themselves. </p>
<p>But the panel’s recommendation to extend the time to 12 months is still a better approach than the committee’s, as it is likely forming a clinical view about prognosis will be more manageable in that time. Providing a set time frame also avoids the uncertainty of the vague use of the phrase “at the end of life”.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/tyY1SrbYu6k?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Former AMA president, Professor Brian Owler, chaired the Ministerial Advisory Panel.</span></figcaption>
</figure>
<p>Also of note is that the panel specifically stated mental illness alone and disability alone will not satisfy eligibility requirements; but nor will they exclude access to voluntary assisted dying.</p>
<h2>What assistance can be provided?</h2>
<p>This is primarily a physician-assisted dying model, which means the patient is expected to take the lethal dose of medication themselves. This is a narrow approach to assisted dying as it is the person themselves who takes the final step to end life, not the doctor.</p>
<p>The panel’s approach is consistent with the committee’s report – both are broadly along the lines of the US assisted dying model such as the one in Oregon. </p>
<p>There are downsides to this and we favour a more inclusive model (like in Canada or under the European model) that permits assistance to die being directly provided by a doctor as well. This choice better reflects the autonomy that underpins these laws. </p>
<p>But the panel (and the committee) did recommend an exception where the person is physically unable to take the medication or digest it themselves. This may not be used often but helps address potential discrimination, for example on the grounds of physical disability which prevents someone taking the medication themselves.</p>
<h2>What safeguards are there?</h2>
<p>The panel has proposed a very rigorous process - comprised of 68 safeguards – that involves three separate requests for voluntary assisted dying (one which is witnessed by two independent witnesses) and two independent medical assessments.</p>
<p>A patient seeking assistance to die must be provided with a range of information including about diagnosis and prognosis, treatment options available, palliative care, and the expected outcome and risks of taking the lethal dose of medication. Doctors involved will have to receive special training about the law and how it operates.</p>
<p>Other safeguards are at the systems level, with a Voluntary Assisted Dying Review Board recommended to examine each case and also to report on how the scheme as a whole is operating. The panel has also proposed a range of new offences specifically about voluntary assisted dying to deter conduct outside the scope of the regime, such as an offence against inducing someone to request assisted dying.</p>
<h2>Will these recommendations become law?</h2>
<p>Strong public opinion, shifting views in the health and medical professions and international trends towards allowing assisted dying mean it will become lawful in Australia at some point. But will it be in Victoria, and soon? </p>
<p>The politics of assisted dying are notoriously fickle and this is the latest of <a href="https://eprints.qut.edu.au/95429/1/Failed%20Voluntary%20Euthanasia%20Law%20Reform%20UNSWLJ.pdf">over 50 bills</a> in Australian parliaments addressing this issue over the past two decades.</p>
<p>But as we <a href="https://theconversation.com/victorias-model-for-assisted-dying-laws-may-be-narrow-enough-to-pass-70120">have argued in the past</a>, features of this law reform effort suggest it could happen. The process of examining the issue has been very careful, inclusive and thoughtful with multiple reports and engagement with expert opinion and national and international evidence. </p>
<p>This is a narrow assisted dying model with a lot of safeguards. There is also high level and public support of senior politicians on both sides of politics. But as always, the ultimate test is what happens on the floor of parliament.</p><img src="https://counter.theconversation.com/content/81401/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ben White receives funding from the Australian Research Council and the National Health and Medical Research Council for research into law, policy and practice relating to end-of-life care</span></em></p><p class="fine-print"><em><span>Lindy Willmott 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>
Public opinion, shifting views in the health profession and international trends allowing assisted dying mean it will be lawful in Australia at some point. But will it be lawful in Victoria soon?
Ben White, Professor of Law and Director, Australian Centre for Health Law Research, Queensland University of Technology
Lindy Willmott, Professor of Law and Director, Australian Centre for Health Law Research, Queensland University of Technology
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/71677
2017-02-09T03:47:21Z
2017-02-09T03:47:21Z
Can a dying patient be a healthy person?
<figure><img src="https://images.theconversation.com/files/154776/original/image-20170130-7693-tnnn45.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Older woman in hospital with man by her side. Via Shutterstock.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/medicine-age-support-health-care-people-562396957?src=u0ZWfNLs37VjNHVkcELJsg-1-7">From www.shutterstock.comr</a></span></figcaption></figure><p>The news was bad. Mimi, a woman in her early 80s, had been undergoing treatment for lymphoma. Her husband was being treated for bladder cancer. Recently, she developed chest pain, and a biopsy showed that she had developed a secondary tumor of the pleura, the space around one of her lungs. Her oncology team’s mission was to share this bad news.</p>
<p>Mimi’s case was far from unique. Each year in the U.S., over <a href="http://www.nhpco.org/sites/default/files/public/Statistics_Research/2016_Facts_Figures.pdf">1.6 million patients</a> receive hospice care, a number that has been increasing rapidly over the past few years. What made Mimi’s case remarkable was not the grimness of her prognosis but her reaction to it.</p>
<p>When the members of the team walked into Mimi’s hospital room, she was lying in bed holding hands with her husband, who was perched beside her on his motorized wheelchair. The attending oncologist gulped, took a deep breath, and began to break the news as gently as he could. Expecting to meet a flood of tears, he finished by expressing how sorry he was.</p>
<p>To the team’s surprise, however, no tears flowed. Instead Mimi looked over at her husband with a broad smile and said, “Do you know what day this is?” Somewhat perplexed, the oncologist had to admit that he did not. “Today is very is special,” said Mimi, “because it was 60 years ago this very day that my Jim and I were married.” </p>
<p>The team members reacted to Mimi with astonishment. How could an elderly woman with an ailing husband who had just been told that she had a second, lethal cancer respond with a smile? Compounding the team’s amazement, she then went on to share how grateful she felt for the life she and her husband had shared. </p>
<p>Mimi thanked the attending oncologist and the members of the team for their care, remarking how difficult it must be to deliver bad news to very sick patients. Instead of feeling sorry for herself, Mimi was expressing sympathy for the people caring for her, exhibiting a remarkable generosity of spirit in the face of a grim disease. </p>
<p>The members of the team walked out of Mimi’s room shaking their heads in amazement. Once they reached the hallway, the attending physician turned and addressed the group: “Mimi isn’t the only person in that room with cancer, but she is surely the sickest. And yet,” he continued, to nods all around, “she is also the healthiest of any of us.” </p>
<p><em>“Be thine own palace, or the world’s thy jail.”</em>
- John Donne</p>
<h2>Disease need not define us</h2>
<p>Mimi’s reaction highlights a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1972172/">distinction</a> between disease and illness, the importance of which is becoming increasingly apparent. Simply put, a body has a disease, but only a person can have an illness. Different people can respond very differently to the same diagnosis, and those differences sometimes correspond to demographic categories, such as <a href="http://www.wsj.com/articles/men-and-women-differ-in-how-they-experience-disease-respond-to-treatment-1443260476">male or female</a>. Mimi is a beautiful example of the ability to respond with joy and gratitude in the face of even life’s seemingly darkest moments. </p>
<p>Consider another very different patient the cancer team met with shortly after Mimi. Ron, a man in his 40s who had been cured of lymphoma, arrived in the oncology clinic expecting the attending oncologist to sign a form stating that he could not work and therefore qualified for disability payments. So far as the attending knew, there was no reason Ron couldn’t hold a job.</p>
<p>Ron’s experience of disease was very different from Mimi’s, a <a href="https://www.ncbi.nlm.nih.gov/pubmed/15054728">phenomenon</a> familiar to cancer physicians. Despite a dire prognosis, Mimi was full of gratitude. Ron, by contrast, though cured of his disease and apparently completely healthy, looked at his life with resentment, even anger. He felt deeply wronged by his bout with cancer and operated with a sense that others should do what they could to help make it up to him.</p>
<p>Mimi was dying but content with her life. Ron was healthy but filled with bitterness. Both patients had the same diagnosis – cancer - but the two human beings differed dramatically, and so too did their illness experiences. Mimi felt blessed by 60 years of a good marriage, while Ron saw in his cancer just one more example of how unfair life had been to him.</p>
<p><em>“Death be not proud, though some have called thee Mighty and dreadful, for thou art not so…”</em>
- John Donne </p>
<h2>The real meaning of health</h2>
<p>When the members of the cancer team agreed that Mimi was the healthiest person in the room, they were thinking of health in terms of wholeness or integrity. In fact, the word health shares the same source as the word <a href="http://www.etymonline.com/index.php?term=health">whole</a>, implying completeness or fullness. Ron felt repeatedly slighted, but Mimi looked at life from a perspective of abundance.</p>
<p>A full life is not necessarily marked by material wealth, power over others, or fame. Many people who live richly do so modestly and quietly, never amassing fortunes, commanding legions, or seeing their picture in the newspaper. What enriches their lives is not success in the conventional sense but the knowledge that they have done their best to remain focused on what really matters.</p>
<p>Mimi easily called to mind many moments when she and those she cared about shared their company and their love. Any sense of regret or sorrow over what might have been quickly gave way to a sense of gratitude for what really was, still is, and will be. Her outlook on life was shaped by a deep conviction that it had a meaning that would transcend her own death.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/154779/original/image-20170130-7672-nkjgl8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/154779/original/image-20170130-7672-nkjgl8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/154779/original/image-20170130-7672-nkjgl8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/154779/original/image-20170130-7672-nkjgl8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/154779/original/image-20170130-7672-nkjgl8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/154779/original/image-20170130-7672-nkjgl8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/154779/original/image-20170130-7672-nkjgl8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Couple enjoying the snow. Via Shutterstock.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/mature-couple-happy-together-562617964?src=OAq8dL8BNPmKBP2X1OkrPg-1-36">From www.shutterstock.com</a></span>
</figcaption>
</figure>
<p>When someone has built up a life ledger full of <a href="https://www.sonoma.edu/users/s/shawth/mans%20Search">meaningful experiences</a>, the prospect of serious illness and death often do not seem so threatening. For Mimi, who had lived most of her days with a keen awareness that they would not go on forever, death’s meaning had been transformed from “Life is pointless” to “Make every day count.”</p>
<p>Mimi regarded the prospect of dying as a lens through which to view the meaning of life. She saw her illness as another adventure through which she and Jim would pass. Death would separate them, but it would also draw them closer together, enabling them to see more clearly than ever how much their love meant to them. </p>
<p>From Mimi’s point of view, death is not a contaminant, fatally introduced to life at its final stage. Instead death is a fire that burns away all that is not essential, purifying a person’s vision of what is most real and most worth caring about. Though not happy to be ill, Mimi was in a profound sense grateful for death. Her sentiments echo those of the poet John Donne:</p>
<p><em>“One short sleep past and we wake eternally:
And death shall be no more; death, thou shalt die.”</em></p><img src="https://counter.theconversation.com/content/71677/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>
Just because a person is dying does not mean that he or she is in a state of panic. Here’s an example of how one woman, through a well-lived life, remained at peace as she faced death.
Richard Gunderman, Chancellor's Professor of Medicine, Liberal Arts, and Philanthropy, Indiana University
James W Lynch, Professor of Medicine, University of Florida
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/69147
2016-12-06T19:08:39Z
2016-12-06T19:08:39Z
We don’t need greater access to Nembutal to achieve good end-of-life care
<figure><img src="https://images.theconversation.com/files/148575/original/image-20161205-19388-16xlg2m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Barbiturates have been used for several purposes including to treat sleep disorders, epilepsy and traumatic brain injury – as well as in anaesthesia and psychiatry.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p>In recent discussions about legalising euthanasia, the drug best known under its American brand name Nembutal has been <a href="https://www.theguardian.com/australia-news/2016/dec/04/philip-nitschke-launches-militant-campaign-for-unrestricted-adult-access-to-peaceful-death?utm_source=esp&utm_medium=Email&utm_campaign=Australia+Morning+mail+new+030615&utm_term=202765&subid=16443583&CMP=ema_1731">widely promoted by advocates</a> as a convenient and effective method for people who wish to end their lives.</p>
<p>Despite the limited availability of pentobarbital (Nembutal’s generic name), it has been used in many cases of euthanasia or assisted suicide, such as that of <a href="http://www.abc.net.au/news/2016-06-24/nembutal-used-in-martin-burgess-darwin-death/7539888">Martin Burgess in Darwin in 2014</a>.</p>
<p>Euthanasia activists such as <a href="http://www.sbs.com.au/news/article/2016/08/10/denton-launches-euthanasia-lobby-group">Andrew Denton</a> and Philip Nitschke claim that, despite advances in palliative care and pain relief, a substantial number of patients in the last stages of terminal illness are left to suffer severe pain or distress without effective treatment. </p>
<p>They argue these patients <a href="http://peacefulpill.blogspot.com.au/">should have a right to demand</a> they be given Nembutal, variously referred to as the “<a href="https://www.peacefulpillhandbook.com/">peaceful pill</a>” or “death pill”, to bring about death. </p>
<p>But while it is universally agreed key aspects of the law regarding end-of-life treatment need to be clarified, this argument is based on a mistaken premise. Under present law, there is no limit to the treatment that may be given to alleviate suffering. Ironically, it is likely any legalisation of euthanasia in this country will actually hinder the care of those most in need.</p>
<h2>Why Nembutal?</h2>
<p>Nembutal belongs to the class of drugs known as barbiturates. Invented in the late 19th century, these act to <a href="https://www.drugs.com/mtm/pentobarbital.html">depress various aspects</a> of brain function. Barbiturates have been <a href="https://www.ncbi.nlm.nih.gov/pubmed/1720379">used for many purposes</a>, including to treat sleep disorders, epilepsy and traumatic brain injury – as well as in anaesthesia and psychiatry.</p>
<p>Barbiturates are <a href="https://www.sedationcertification.com/barbitruates.pdf">known to provide pleasant sedation</a> and may be used effectively to relieve distress. In high doses, these drugs can cause suppression of breathing and death. Because of the risks associated with overdoses, they have been withdrawn from routine medical use over the last 20 years. </p>
<p>Now the drugs can be obtained directly from the manufacturers or from <a href="http://www.abc.net.au/news/2013-09-13/hundreds-risk-jail-by-importing-illegal-euthanasia-drug/4956922">online sellers</a>. In Australia, pentobarbital is listed as a Schedule 4, prescription-only medicine. The <a href="https://www.tga.gov.au/consultation-invitation/consultation-proposed-amendments-poisons-standard-joint-accs-and-acms-meeting-november-2016">Therapeutic Goods Administration</a> is considering moving it to Schedule 8, which would classify it as a controlled drug like morphine.</p>
<p>In end-of-life care, experienced clinicians today use combinations of multiple treatments to help ease physical and psychological suffering. These treatments may be complex because “suffering” in such settings is not an undifferentiated condition for which there is a single, universally effective therapy such as pentobarbital or morphine. In addition to drugs, counselling, support for family and many other measures are commonly required. The use of these treatments often requires considerable skill. </p>
<p>Not only is the argument for the need for euthanasia wrong, but legalising euthanasia, and Nembutal with it, is likely to be counterproductive. This is because it will result in limitation of access to appropriate care for the majority of patients who do not satisfy the strict criteria for euthanasia. </p>
<h2>Two scenarios</h2>
<p>To illustrate why this is so, imagine the case of an elderly man in the last stages of terminal cancer. The disease has spread and is in his bones, lungs, liver and brain. It is incurable and he has, at most, weeks to live. </p>
<p>His suffering is severe owing to a number of physical symptoms, fear and anxiety. He has said his farewells to family and advised his doctors he is ready to die.</p>
<p>Now consider two scenarios. In the first, the man’s doctor recognises her patient’s suffering. She consults with him and his family and decides to provide treatment either with Nembutal itself or with a cocktail of medications with a similar effect. </p>
<p>She administers the medication in a gradually escalating dose. The patient’s suffering is quickly alleviated. Within a few hours, he slips into unconsciousness and dies peacefully with his family beside him. </p>
<p>In the second scenario, the doctor responds to the request from the patient to kill him. She arranges consultations with two psychiatrists to confirm he has the capacity to make such a request. </p>
<p>She fills in the multiple forms of the new euthanasia bureaucracy. She overrides the concerns expressed by some of his children, arguing that mercy killing is their father’s wish. </p>
<p>When the psychiatrists give their approval, she prepares a lethal dose of Nembutal and administers it over two minutes. The patient’s suffering is alleviated, he slips into unconsciousness and dies peacefully with his family beside him. </p>
<p>The first scenario is a classic example of “double effect”, in which a good act – the relief of suffering – is associated with a foreseeable but unintended harmful consequence – the death of the patient. The second is a case of voluntary euthanasia. </p>
<p>Although the outcomes of the two cases – the death of the patient – appear the same, the two acts are in fact quite different. </p>
<h2>Double effect</h2>
<p>The principle of double effect is widely and appropriately employed in clinical practice today. The medications used to relieve suffering may include barbiturates or other kinds of drugs, such as benzodiazepines, ketamine, propofol or opiates. The relief of the suffering is the objective and outcome, even in cases where death also ensues. </p>
<p>Throughout history, a clear moral distinction has been recognised between double effect and the intentional taking of life. It is one of the traditions of medicine that the target of care should be the suffering of the patient, not life itself. </p>
<p>Most professional medical associations around the world, including in Australia, maintain this view, which is supported by most religions. The act of the doctor in treating suffering in our first scenario would therefore be widely supported. </p>
<p>For more than half a century, common law in Australia has <a href="https://www.mja.com.au/journal/2015/202/9/minimalist-legislative-solution-problem-euthanasia">recognised the principle of double effect</a> and has accepted that whatever treatment is needed to alleviate the suffering of a patient is permissible – even if an outcome happens to be that person’s death.</p>
<p>It is true that some people, including doctors, lack certainty about the law. This is mainly because it has never been tested in an Australian court — <a href="http://www.theage.com.au/victoria/euthanasia-advocate-rodney-syme-challenges-medical-board-over-assisted-death-20161117-gsrsgz.html">despite repeated prompts to do so</a>, as by the prominent public advocate for double effect, Dr Rodney Syme. </p>
<p>For this reason, many — including myself — support a <a href="https://www.mja.com.au/journal/2015/202/9/minimalist-legislative-solution-problem-euthanasia">precise and explicit statutory clarification</a>, both to avoid uncertainty and to ensure no suffering person is left without adequate treatment.</p>
<p>Let us think more about the euthanasia scenario. As in the second case, the administration of Nembutal alleviates the patient’s suffering and he dies, an outcome that was equally achieved in the first scenario. </p>
<p>But there are no additional benefits. If the patient failed the test of full competency – as will be the case for the majority of patients in such circumstances, whose cognitive function will often be affected by the severity of their illness, dementia or other factors — adequate relief of suffering will be obstructed rather than facilitated. To limit appropriate sedation only to those who can consciously demand it would merely increase the burden of harm. In addition, the deliberate taking of life would be experienced as distressing to many members of society and an affront to the traditions of medicine. </p>
<p>In other words, legalising euthanasia by relaxing access to Nembutal or similar drugs will neither resolve the underlying problems experienced at the end of life nor enhance the care of those most in need of it. It will create harm and no further good. </p>
<p>If legal reform is to occur, it must focus not on the availability of one or other drug but on securing both the humane outcomes desired by the community and the moral framework its members most prize. The means to achieve this are readily available within the scope of existing legal and medical practice. The purposes of all major parties to the euthanasia debate can be most effectively served by a combination of a simple but careful clarification of the current law and an educational program to ensure it is appropriately implemented.</p><img src="https://counter.theconversation.com/content/69147/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Komesaroff has received research funding from multiple sources, including government and non-government funding agencies. </span></em></p>
It is likely that, ironically, any legalisation of euthanasia in this country will actually hinder the care of those most in need.
Paul Komesaroff, Professor of Medicine, Monash University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/62905
2016-09-15T04:44:37Z
2016-09-15T04:44:37Z
Take control over the end of your life: what you need to know about advance care directives
<figure><img src="https://images.theconversation.com/files/135745/original/image-20160829-17872-om2fhb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Having an advance care directive ensures your values and wishes are known, even beyond a time when you can no longer speak for yourself.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p>Many agree on the <a href="http://www.bmj.com/content/320/7228/129">factors contributing</a> to a good death. People want to be treated with dignity, have relief from pain and, as much as possible, to control what happens to them. </p>
<p>Advance care planning is one way to exercise control. The process involves discussing and expressing preferences about the kind of care you would or would not want in a situation where you lack the mental capacity to make decisions. </p>
<p>As part of this process, you can write an advance care directive – a document that can be legally binding. It states your views and instructions about health care and other personal matters. </p>
<p>You can also appoint someone you trust to be you health care decision-maker. Despite its usefulness, only a <a href="https://theconversation.com/making-a-will-why-not-plan-your-end-of-life-care-too-32562">small number of Australians</a> (around 14%) currently have an advance care directive. </p>
<h2>Why have a directive?</h2>
<p>Studies show at least one-third of patients <a href="http://intqhc.oxfordjournals.org/content/early/2016/06/16/intqhc.mzw060">receive non-beneficial treatments</a> at the end of their life, including tube-feeding and surgical procedures when there is little hope of the patient getting better. This is despite many older Australians saying they <a href="https://theconversation.com/end-of-life-care-no-we-dont-all-want-whatever-it-takes-to-prolong-life-41495">do not want medical interventions</a> to keep them alive when their quality of life is poor.</p>
<p>With a good advance care directive in place, people are <a href="http://www.ncbi.nlm.nih.gov/pubmed/25700590">more likely to have</a> their wishes for care respected. People with a directive are also more likely to experience fewer unwanted medical interventions, less likely to be moved from their home or community care to a hospital, and less likely to die in a hospital.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/135756/original/image-20160829-17880-1ad222o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/135756/original/image-20160829-17880-1ad222o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/135756/original/image-20160829-17880-1ad222o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/135756/original/image-20160829-17880-1ad222o.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/135756/original/image-20160829-17880-1ad222o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/135756/original/image-20160829-17880-1ad222o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/135756/original/image-20160829-17880-1ad222o.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 directive means you can tell people your health care wishes so your choices can be legally respected.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/psyliby/5590283400/in/photolist-9vZEuy-927imb-93JC3L-cpVsB5-9e6GEc-bm1u8Q-aN6FDZ-9e6GBc-dG2Rtx-e1o4ei-dH3qH6-qsnaAb-mu6PKr-e24BCs-r77d-gmSdpf-4x6uGS-gmSwfH-8ifyYU-dZwmjZ-9g72Fq-967Nuf-966X1Y-9dH6Dy-964NUp-aixdcF-oPChwZ-nAPXDK-964Ncv-bfPdmt-jrETPr-964NwB-aiA12S-daQzDW-deMfJv-oswwMC-ecUZ78-8icm4B-91d1N2-b4rCDr-9tA6P5-akFQZ1-dcQF8j-8ickZe-pTiCk-9vZEyS-aN6FtP-pfmzjA-kpL4zk-dF1rqE">Sybil Liberty/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>If a patient who doesn’t have a directive is seriously ill and unable to communicate, doctors will consult with family or others close to the patient about their care. Family members and caregivers <a href="http://annals.org/article.aspx?articleid=746856">often experience stress and guilt</a> when making decisions for a loved one at the end of their life. These decisions are made easier if they are guided by the values and preferences expressed in an advance care directive.</p>
<h2>Are directives legally binding?</h2>
<p>In Australia, the legal context for advance care planning is complicated as <a href="http://advancecareplanning.org.au/contacts-and-links/">every state and territory has its own laws</a>, but they have common principles. For instance, each law respects <a href="http://www.austlii.edu.au/au/cases/nsw/NSWSC/2009/761.html">the right of an adult who has mental capacity</a> to plan in advance for their health care. </p>
<p>There are two kinds of directives: statutory and common law. A statutory directive means the person completes a document that meets specific government requirements – such as this <a href="https://www.advancecaredirectives.sa.gov.au/forms-and-guides/forms-and-guides">one in South Australia</a> or this <a href="http://www.justice.qld.gov.au/__data/assets/pdf_file/0007/15982/advance-health-directive.pdf">one in Queensland</a>. This week, the Victorian government <a href="http://www.legislation.vic.gov.au/domino/Web_Notes/LDMS/PubPDocs.nsf/ee665e366dcb6cb0ca256da400837f6b/c4016493339cd44dca25802d007d189e!OpenDocument">introduced a bill to parliament</a> to make advanced care directives legally enforceable.</p>
<p>New South Wales and Tasmania don’t have statutes that create forms for advance care directives, but people can make common law directives. This means they can state their health care wishes in their own way and they can be legally respected.</p>
<p>In 2009, the <a href="http://www.austlii.edu.au/cgi-bin/sinodisp/au/cases/nsw/NSWSC/2009/761.html?stem=0&synonyms=0&query=advance%20care%20directive">NSW Supreme Court ruled</a> that a hospital had to follow the medical instructions a man had recorded in worksheets. The man was hospitalised with serious illness, lost consciousness and went into kidney failure. The court said the hospital had to respect the written instructions that refused blood transfusions and dialysis.</p>
<p>States that have statutory advance directives may also allow a person to make a common law directive. So it is not always necessary to use a government form. People interested in making an advance directive or appointing a health-care decision-maker should look up the rules in their state or territory; there are some <a href="https://end-of-life.qut.edu.au/advance-directives">good websites</a> with accurate information.</p>
<h2>What’s in a directive?</h2>
<p>People often think of an advance care directive as a document that refuses consent to specific treatments. For example, you can specify you don’t want CPR or tube-feeding if you have a life-threatening medical problem with little chance of recovery. </p>
<p>This is true. But directives can also be used to document your values, say what quality of life means to you and specify if you have spiritual or lifestyle beliefs you want respected. For instance, you can write down things that would help create a home-like environment if you have to be cared for in a facility, such as music you would like to listen to or treasured items you would like in your room. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/135762/original/image-20160829-17865-1kbufik.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/135762/original/image-20160829-17865-1kbufik.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=385&fit=crop&dpr=1 600w, https://images.theconversation.com/files/135762/original/image-20160829-17865-1kbufik.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=385&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/135762/original/image-20160829-17865-1kbufik.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=385&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/135762/original/image-20160829-17865-1kbufik.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=483&fit=crop&dpr=1 754w, https://images.theconversation.com/files/135762/original/image-20160829-17865-1kbufik.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=483&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/135762/original/image-20160829-17865-1kbufik.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=483&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">You can describe the music you would like to listen to if you have to be cared for in a facility.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>A person might complete an official statutory form to appoint someone as their health-care decision-maker, then attach a statement of values.</p>
<p>A <a href="http://start2talk.org.au/themes/wardsix/resources/worksheets/start2talk_worksheet_1.4.pdf">statement of values, wishes and preferences</a> can be helpful for appointed decision-makers and for care providers. Websites such as <a href="https://www.myvalues.org.au">My Values</a> can help you consider issues about medical care and dying you may not have thought about before.</p>
<h2>What else do I need to know?</h2>
<p>You are encouraged to review your advance care directive, and other legal documents, to make sure they are up-to-date and reflect your current wishes and instructions.</p>
<p>It is also vital to share your directive with your health-care providers, appointed decision-maker (if you have one), family members and other loved ones who may be called on to help make decisions. Doctors cannot follow a directive if they don’t know it exists.</p>
<p>There is no mandatory central registry in Australia to make sure doctors have access to directives when needed. But people with an electronic health record – known as <a href="https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/content/home">My Health Record</a> – can include their advance care directive information there. </p>
<p>Advance care planning is typically promoted in health-care settings. But some people are more likely to talk to a lawyer than a doctor about their health wishes. This often happens when a person seeks legal help on other aspects of future planning, such as writing a will or appointing a financial decision maker. </p>
<p>I have argued that <a href="http://www.westlaw.com.au/maf/wlau/app/document?docguid=Ia0c979c53e9011e6b8f3f870462e5362&tocDs=AUNZ_AU_JOURNALS_TOC&isTocNav=true&startChunk=1&endChunk=1">legal and health professions can work together</a> more effectively to help their clients plan for their future health care. Doing so promotes their clients’ interests and autonomy. It makes sure people’s values and wishes are known, even beyond a time when they can no longer speak for themselves.</p><img src="https://counter.theconversation.com/content/62905/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nola Ries 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>
At least one-third of patients receive non-beneficial treatments at the end of their life. Having a good advance care directive that you share with others helps them know and respect your wishes.
Nola Ries, Senior Lecturer, University of Newcastle
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/60120
2016-06-13T13:59:31Z
2016-06-13T13:59:31Z
In the face of death, telling and sharing our story helps us make sense of dying
<figure><img src="https://images.theconversation.com/files/126281/original/image-20160613-29219-119a8y6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">viki2win/shutterstock.com</span></span></figcaption></figure><p>For those who may feel that many decades separate them from their deaths, contemplating the end of life seems difficult, even abstract. But <a href="http://pmj.sagepub.com/content/20/3/183.abstract">stories of the dying</a> hold a fascination for us, from diagnosis to treatment, remission or relapse, survival or death. </p>
<p>Personal dying narratives – in which the author writes about their own imminent death, or the tale of their death as written by someone close to them – first emerged as a popular genre in books, newspapers and magazines in the 1950s. Today, such stories published online can confer authors with celebrity status: <a href="http://stephensstory.co.uk/">Stephen Sutton</a> died of cancer in 2014 aged just 19, and his blog, written over the two years prior to his death, was read by more than a million people and helped raise a staggering £2.3m for the Teenage Cancer Trust.</p>
<p>The earliest of these dying narratives tended to be the preserve of public figures, celebrities, authors and journalists. For example, American journalist Charles Wertenbaker’s account of his facing colon cancer in 1955 and his choice to die by euthanasia was the basis of the book Death Of A Man written and published after his death by <a href="http://www.nytimes.com/1997/03/29/arts/lael-wertenbaker-87-author-who-wrote-of-husband-s-death.html">his wife Lael Wertenbaker</a>. She later said that her determination to publish this story was to raise awareness about the realities of a cancer death and the need to talk openly about euthanasia, and in that she has been successful.</p>
<p>Since then, there have been many other high profile stories of facing death that have raised other issues that go beyond the purely biographical. Tennis player <a href="http://www.nytimes.com/learning/general/onthisday/bday/0710.html">Arthur Ashe</a>, in his autobiography, written as he was dying from AIDS acquired from an HIV-infected blood transfusion during heart surgery, sought to raise awareness of the risks of untested donated blood.</p>
<p>Stories of medical errors or delays in treatment are a common theme. Journalist <a href="http://www.theguardian.com/society/2011/dec/30/ruth-picardie-cancer-doctor-struck-off">Ruth Picardie</a>, who died of breast cancer in 1998 aged 33, wrote about the impact of poor medical decision making at her diagnosis that significantly reduced her chances of survival. </p>
<p>Other writers elaborate on the stark everyday realities of a terminal illness: fear and uncertainty. Journalist <a href="http://news.bbc.co.uk/1/hi/uk/1198541.stm">John Diamond</a> died in 2001, and eloquently wrote how “cancer is for cowards, too”, and not just a battle for the “brave” and “heroes”. For most people, there is no choice but to get on with it, to endure horrible treatments and find very ordinary ways to cope.</p>
<p>In a similar way, doctor <a href="https://drkategranger.wordpress.com/">Kate Granger</a> shares on her blog the unpredictable emotional responses since her diagnosis with terminal cancer:</p>
<blockquote>
<p>As a newly diagnosed 29-year-old girl I thought I knew exactly how I wanted things to be with regards to my treatment. As a hardened and experienced 34-year-old cancer patient I now know I have to face each decision at a time and cannot predict how I’m going to react emotionally to any of this.</p>
</blockquote>
<h2>The appeal of deathbed tales</h2>
<p>Personal stories of death and dying are more likely to be told if the writer is younger, has a cancer diagnosis, and is running a campaign to raise funds or awareness of specific challenges (and benefits) of treatment, or working with clinicians. Older people are much less likely to share stories of illness, particularly if they’re struggling with the more common effects of age, such as stroke or dementia. Older generations are increasing their use of the internet, however, and some charities specific to an illness such as Parkinson’s UK have developed <a href="http://www.parkinsons.org.uk/tags-forum-and-website/real-life-stories">online forums</a> where real life stories can be shared between younger and older people.</p>
<p>There are other subtle reasons for sharing the story of our final days: <a href="http://www.sciencedirect.com.ezproxy.lancs.ac.uk/science/article/pii/0005796793901054">telling a story can be therapeutic</a> and it can make you feel better to verbally share, write down or unload tales of the affliction suffered, and the resulting fear, anger, confusion or sadness. We have, it seems, a deep need to make sense of events and <a href="http://press.uchicago.edu/ucp/books/book/chicago/W/bo14674212.html">communicate this process through storytelling</a>.</p>
<p>We turn to writing and to reading other people’s books, blogs and poetry when we are being put through the trauma of illness. We may wish to preserve some sense of normality again, to give voice to memories, and to search for meaning at the end of our lives. Importantly, reading the stories of others can offer support and comfort. To connect with others online and exchange notes about our illness with others in the same situation is to put trust in the personal anecdote over the impersonal official leaflet. Our stories are witnessed, and in this way we may feel some part of our story continues after death.</p><img src="https://counter.theconversation.com/content/60120/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Amanda Bingley was a researcher on the team that received funding from Macmillan Cancer Support for this research. </span></em></p>
Putting the unsayable into words makes it easier to bear, for both the writers and those reading them.
Amanda Bingley, Lecturer in Health Research, Lancaster University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/58053
2016-05-19T19:38:24Z
2016-05-19T19:38:24Z
Here’s what people in their 90s really think about death
<figure><img src="https://images.theconversation.com/files/122252/original/image-20160512-28448-17z82r.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People who are over 90 when they die need considerably more support with every aspect of their daily life in their final year.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/pat00139/6064027940/in/photolist-aeRJeS-5L7Y7C-m5E8Ey-6DP7KT-3kDXwq-qzoKz9-54D8Hj-se6NVU-4yCimf-4WSCZV-7VdUam-f3peD4-7nU5XE-7N64zx-kiz6K-5L3JMa-5mvy2-52dAfN-qn87zf-cNxeiS-pSE8bd-5Lvcri-5Lzrn7-3F3Vq3-7ZY2J6-neksHR-zxLC7-7nU8k5-qdaceb-9kK27R-7DMcUa-7nU8v9-aaZNai-oEoxXh-7nU8oQ-7nU8ys-7nQexF-9TpeeF-foKqiG-BPBsj-92SNhn-5L7Yao-bDZoWK-obc3DL-7YCKbn-hYa1V-3gKeR-nwJda5-MLgCH-fNsZm5">Pat Pilon/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p><em>This is one of two final articles in our Coping with Mortality series. Today’s accompanying piece explains the importance of <a href="https://theconversation.com/palliative-care-should-be-embraced-not-feared-59162">effectively using palliative care</a> services. You can read previous articles in our series <a href="https://theconversation.com/au/topics/coping-with-mortality">here</a>.</em></p>
<hr>
<p>Across the developed world more people are living longer, which of course means more get to be extremely old by the time they die. Nearly half of <a href="http://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/ageing/bulletins/estimatesoftheveryoldincludingcentenarians/2015-09-30">all deaths in the United Kingdom</a> are in people aged 85 or older, up from only one in five just 25 years ago. </p>
<p>Dying in older age can mean a different sort of death, such as becoming gradually frailer in both body and mind and developing numerous health problems over many years. Where years after retirement were previously considered just <em>old age</em>, a longer life span means the later years now include variation <a href="https://en.wikipedia.org/wiki/Old_age">reflected in labels</a> such as <em>younger old</em> and <em>older old</em>.</p>
<p>Our <a href="http://www.ncbi.nlm.nih.gov/pubmed/20122036">previous research showed</a> people who are over 90 when they die need more support with daily life in their last year than even those who die in their late 80s. In the United Kingdom, around 85% of those dying aged 90 or older were so disabled as to need assistance in basic self care activities. Only 59% of those between 85 and 89 at death had this level of disability. </p>
<p>This knowledge has implications for planning support for life and death in different care settings. But what do we know about what the <em>older old</em> (95 plus) people actually want when it comes to decisions about their care as they approach the end of their lives? </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/123136/original/image-20160519-22307-jpgycr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/123136/original/image-20160519-22307-jpgycr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=438&fit=crop&dpr=1 600w, https://images.theconversation.com/files/123136/original/image-20160519-22307-jpgycr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=438&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/123136/original/image-20160519-22307-jpgycr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=438&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/123136/original/image-20160519-22307-jpgycr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=551&fit=crop&dpr=1 754w, https://images.theconversation.com/files/123136/original/image-20160519-22307-jpgycr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=551&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/123136/original/image-20160519-22307-jpgycr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=551&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Very old people in western society are increasingly marginalised.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<h2>How the older old feel about dying</h2>
<p>The oldest and frailest in our society are becoming less visible as many who need the most support, such as those with dementia, are either in care homes or less able to get out and about. But their voices are crucial to shaping end-of-life care services.</p>
<p>In our <a href="http://journals.plos.org/plosone/article?id=info:doi/10.1371/journal.pone.0150686">latest research</a>, we had conversations about care experiences and preferences with 33 women and men aged at least 95, some over 100, and 39 of their relatives or carers. Of these, 88% were women, 86% were widowed and 42% lived in care homes.</p>
<p>Death was part of life for many of the older people who often said they were taking each day as it comes and not worrying too much about tomorrow. “It is only day-from-day when you get to 97,” said one woman. Most felt ready to die and some even welcomed it: “I just say I’m the lady-in-waiting, waiting to go,” said one.</p>
<p>Others were more desperate in their desire to reach the end. “I wish I could snuff it. I’m only in the way,” was a typical sentiment in those who felt they were a nuisance. Others begged not to be left to live until they were a hundred, saying there was no point to keeping them alive.</p>
<p>Most were concerned about the impact on those left behind: “The only thing I’m worried about is my sister. I hope that she’ll be not sad and be able to come to terms with it.” </p>
<p>The dying process itself was the cause of most worries. A peaceful and painless death, preferably during sleep, was a common ideal. Interviewees mainly preferred to be made comfortable rather than have treatment, wishing to avoid going into hospital. </p>
<p>We found families’ understanding of their relative’s preferences only occasionally incorrect (just twice). For instance, one person said they wanted to have treatment for as long as they could, while their family member believed they would prefer palliative care. This highlights the importance of trying to talk options through with the older person rather than assuming their family knows their views.</p>
<p>We found most discussed end-of-life preferences willingly and many mentioned previous talk about death was uncommon, often only alluded to or couched in humour. A minority weren’t interested in these discussions.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/123145/original/image-20160519-22319-1jj66jh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/123145/original/image-20160519-22319-1jj66jh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/123145/original/image-20160519-22319-1jj66jh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/123145/original/image-20160519-22319-1jj66jh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/123145/original/image-20160519-22319-1jj66jh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/123145/original/image-20160519-22319-1jj66jh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/123145/original/image-20160519-22319-1jj66jh.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">Most of the older old don’t fear death and some even look forward to it.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/ambroo/8840916762/in/photolist-etf1xm-pQNgei-pPD4UY-e8SHXJ-7moAP8-pNJYpv-q5Bnm1-7usNuz-8JKKMm-5vVt7z-hJVpMs-7wAebj-dqCnS3-nxEPeF-kLKkBh-3amg3m-99VSXF-mZv8WL-bqZ5KH-aCRSbj-pYvhH3-n9SSU7-pq1BQ6-pqEoSs-pws4Si-p4hDE3-o8D4uA-acuvkc-bY7Xso-dgSXGy-quEQzB-iWmTu8-9t28Te-h7y2MT-ihdEto-6kKhML-fSb7hj-nCSsd7-rLHsvu-6PUA2J-aF62p3-pEkihZ-ny59Fr-eQh22B-rcKPJP-rCLexo-72RYrR-o2aguC-kQfa9-fM7ZaN">Broo_am (Andy B)/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<h2>We need to talk with the older old</h2>
<p>It’s rare to hear from people in their tenth or eleventh decade but there are some studies that have explored the views of the younger old. Most often these have concentrated on care home residents and occasionally on those living at home.</p>
<p>A literature review conducted in Sweden in 2013 found a total of 33 studies across the world that <a href="http://link.springer.com/article/10.1007/BF03324537">explored views of death and dying</a> among older people, although very few of these sought the views of the older old.</p>
<p>A 2002 study found older people in Ghana <a href="http://journals.cambridge.org/action/displayAbstract?aid=110829">looked forward to death</a>, seeing it as a welcome visitor that would bring peace and rest after a strenuous life. And a 2013 study in the Netherlands showed many people <a href="http://www.jpsmjournal.com/article/S0885-3924(13)00146-2/abstract">changed their preferences</a> on how they wanted to die as their care needs changed.</p>
<p>A recent review <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782798/pdf/bjgp-oct2013-63-615-e657.pdf">examined older people’s attitudes</a> towards advance care plans and preferences for when to start such discussions. It identified 24 studies, mainly from the United States and with younger old age ranges. The results showed that while a minority shirked from end-of-life care discussion, most would welcome them but were rarely given the opportunity.</p>
<p>These studies support our findings on older people’s willingness to discuss often taboo topics, their acceptance of impending death, and their concerns around what the dying process would bring: increasing dependence, being a burden and the impact of their own death on those left behind. </p>
<p>To plan services to best support rising numbers of people dying at increasingly older ages in different settings, we need to understand their priorities as they near the end of life.</p><img src="https://counter.theconversation.com/content/58053/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jane Fleming receives funding from the UK's National Institute for Health Research and The Abbeyfield Society.</span></em></p>
It is rare to hear from people in their tenth or eleventh decade but their voices are crucial to shaping end-of-life care services.
Jane Fleming, Senior Research Associate, University of Cambridge
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/54258
2016-02-08T11:28:11Z
2016-02-08T11:28:11Z
How scared of death are we really – and how does that affect us?
<figure><img src="https://images.theconversation.com/files/110427/original/image-20160205-18300-11w4r3z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">How do you cope with thinking about death?</span> <span class="attribution"><span class="source">Hitdelight </span></span></figcaption></figure><p>If death is the final taboo, it might not be for much longer. There has, in recent years, been <a href="http://www.dyingmatters.org/">increasing effort</a> to promote conversations about death and dying, both in the home and in more public settings. For example, death cafes, first launched in Switzerland in 2004, have <a href="http://deathcafe.com/">spread around the world</a>, enabling people to speak about their fears over cake and coffee.</p>
<p>Our reluctance to talk about death is often taken as evidence that we are afraid, and therefore suppress thoughts about it. However, there is little direct evidence to support that we are. So what is a “normal” amount of death anxiety? And how does it manifest itself?</p>
<h2>Experimenting with death</h2>
<p>Judging by <a href="http://ome.sagepub.com/content/43/2/157.short">studies using questionnaires</a>, we seem more bothered by the prospect of losing our loved ones than we do about dying ourselves. Such studies also show that we <a href="http://www.tandfonline.com/doi/abs/10.1080/07481180701880935">worry more about the dying process</a> – the pain and loneliness involved, for example – than about the end of life itself. In general, when we are asked if we are afraid to die, most of us deny it, and report only mild levels of anxiety. The minority who report high levels of death anxiety are even considered psychologically abnormal – thanatophobic – and recommended for treatment. </p>
<p>On the other hand, our tendency to report only low levels of death anxiety might be a result of our reluctance to admit to our fear, to others and ourselves. Based on this hypothesis, social psychologists have, for almost 30 years now, examined the social and psychological effects of being confronted with our own mortality. In well over 200 experiments, individuals have been instructed to imagine themselves dying.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/110429/original/image-20160205-18277-lv6dto.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/110429/original/image-20160205-18277-lv6dto.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/110429/original/image-20160205-18277-lv6dto.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/110429/original/image-20160205-18277-lv6dto.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/110429/original/image-20160205-18277-lv6dto.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/110429/original/image-20160205-18277-lv6dto.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/110429/original/image-20160205-18277-lv6dto.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">What’s worse: the death of a loved one or facing our own death?</span>
<span class="attribution"><span class="source">Photographee.eu</span></span>
</figcaption>
</figure>
<p>The <a href="http://psycnet.apa.org/psycinfo/1990-01262-001">first study of this kind</a> was conducted on US municipal court judges, who were asked to set bond for an alleged prostitute in a hypothetical scenario. On average, judges who were confronted with their mortality beforehand set a much higher bail than those who were not confronted – $455 versus $50. Since then, many other effects have been found among groups including the general population in many different countries. </p>
<p>Besides making us more punitive, thinking about death also increases our <a href="http://psp.sagepub.com/content/23/8/884.short">nationalistic bias</a>, makes us more prejudiced against other <a href="http://psycnet.apa.org/journals/psp/77/5/905/">racial</a>, <a href="http://psycnet.apa.org/journals/psp/58/2/308/">religious</a> and <a href="http://psp.sagepub.com/content/30/12/1524.short">age</a> groups, and
leads to <a href="https://theconversation.com/five-surprising-findings-about-death-and-dying-51923">other such parochial attitudes</a>. Taken together, these dozens of studies show that being reminded of death strengthens our ties to the groups we belong to, to the detriment of those who are different from us. </p>
<p>Reminders of death also <a href="http://onlinelibrary.wiley.com/doi/10.1111/pops.12005/abstract">affect our political</a> and <a href="http://www.sciencedirect.com/science/journal/00221031/48/5">religious</a> beliefs in interesting ways. On the one hand, they polarise us: political liberals become more liberal while conservatives become more conservative. Similarly, religious people tend to assert their beliefs more fervently while nonreligious people disavow more. </p>
<p>On the other hand, these studies have also found that thinking about death tempts us all – religious or otherwise – towards more religious belief in subtle, <a href="http://www.sciencedirect.com/science/journal/00221031/48/5">perhaps unconscious ways</a>. And when the reminder of death is sufficiently powerful and when participants are not mindful of their prior political commitments, liberals as well as conservatives tend to endorse conservative ideas and candidates. <a href="http://onlinelibrary.wiley.com/doi/10.1111/pops.12005/abstract">Some researchers</a> claim that this could explain the US political shift to the right after 9/11. </p>
<h2>What do the results mean?</h2>
<p>But why does the prospect of death make us more punitive, conservative and religious?
According to many theorists, <a href="http://www.penguinrandomhouse.com/books/170217/the-worm-at-the-core-by-sheldon-solomon-jeff-greenberg-and-tom-pyszczynski/9781400067473/">reminders of death compel us to seek immortality</a>. Many religions offer literal immortality, but our secular affiliations – such as our nation states and ethnic groups – can provide symbolic immortality. These groups and their traditions are a part of who we are, and they outlive us. Defending our cultural norms can boost our sense of belonging and being more punitive against individuals who violate cultural norms – such as prostitutes – is symptom of this. </p>
<p>Consistent with this interpretation, researchers have also found that reminders of death increase our desire <a href="http://www.tandfonline.com/doi/abs/10.1080/15298860802391546?journalCode=psai20">for fame</a> and <a href="http://www.sciencedirect.com/science/article/pii/S0022103106001478">for children</a>, both of which are commonly associated with symbolic immortality. It turns out that we do want to be immortalised through our work and our DNA. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/110426/original/image-20160205-18264-1fuogod.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/110426/original/image-20160205-18264-1fuogod.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/110426/original/image-20160205-18264-1fuogod.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/110426/original/image-20160205-18264-1fuogod.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/110426/original/image-20160205-18264-1fuogod.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/110426/original/image-20160205-18264-1fuogod.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/110426/original/image-20160205-18264-1fuogod.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">Thinking about death makes us dream of being famous.</span>
<span class="attribution"><span class="source">Andrea Raffin</span></span>
</figcaption>
</figure>
<p>When asked, we do not seem, perhaps not even to ourselves, to fear death. Nor would we guess that thinking about death has such widespread effects on our social attitudes. But there are <a href="http://www.annualreviews.org/eprint/RbHNxkCnurpWmI7VsipZ/full/10.1146/annurev.psych.55.090902.141954">limits to our introspective powers</a>. We are notoriously bad at <a href="http://cdp.sagepub.com/content/14/3/131.short">predicting how we will feel</a> or behave in some future scenario, and we are similarly bad at working out <a href="http://psp.sagepub.com/content/early/2010/09/10/0146167210383440.abstract">why we feel the way we do</a>, or even <a href="http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=287682&fileId=S0140525X04000159">why we have behaved a certain way</a>. So, whether we realise it or not, it seems that to bring death to the surface of our minds is to open Pandora’s box. </p>
<p>So what should we make of these new efforts to demystify death and dying through conversation? It is hard to say. Increasing death’s profile in our imaginations, private and public, might make us all more punitive and prejudiced, as the research found. But then perhaps we get these negative effects precisely because we are unaccustomed to thinking and talking about death. </p>
<p>In <a href="http://psycnet.apa.org/psycinfo/2000-02102-015">exposure therapy</a>, carefully exposing patients to the source of their anxiety – an object, an animal, or even a memory – reduces their fear. In the same way, perhaps this most recent taboo-breaking trend will inoculate us psychologically, and make us more robust in the face of death.</p><img src="https://counter.theconversation.com/content/54258/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jonathan Jong 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>
Why thinking about death makes us more religious, conservative and prejudiced.
Jonathan Jong, Research Fellow, Coventry University
Licensed as Creative Commons – attribution, no derivatives.