tag:theconversation.com,2011:/id/topics/illness-24381/articles
Illness – The Conversation
2023-09-24T20:01:53Z
tag:theconversation.com,2011:article/209989
2023-09-24T20:01:53Z
2023-09-24T20:01:53Z
‘Excavating something I barely had language for’: two memoirs of disability and family explore Deafness and dwarfism
<p>In my many years of reading and writing about disability and chronic illness, my preference leans toward books that look outward, rather than inward, in their approach to truth-telling. The intricacies of living in a marginalised body tend to feel more philosophical if they resist solipsism and reach toward the universal. </p>
<p>I’m thinking about Fiona Wright’s essay collection, <a href="https://giramondopublishing.com/books/the-world-was-whole">The World Was Whole</a>, which focuses on suburban and urban houses and homes, and invites us to think about the body as home – and the question of what happens when the body fails us. </p>
<p>Books like this prove inclusive, rather than exclusive, because they cater to those living with disability, but also use a near-universal experience (in Wright’s case, the theme of houses and homes) as a framework to help readers to imagine their way into their specific experience (for Wright, of being failed by her body).</p>
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<p><em>Review: The House with all the Lights On – Jessica Kirkness (Allen & Unwin); Broke – Sam Drummond (Affirm Press).</em></p>
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<p>The more people included in a readership, the wider the discussion and the greater the potential to grow larger communities of caring and empathy. </p>
<p>In their plight to lift the lid on oft-hidden disabled experiences, two debut memoirs – one exploring Deafness, the other pseudoachondroplasia (a form of dwarfism) – do just this. They focus not just on the experience of living in an othered body, but on the authors’ experiences of family.</p>
<h2>Deaf ways of being</h2>
<p>Jessica Kirkness’s grandfather videoed his family, his sheep and the busy ants. But as a Deaf person, he didn’t bother with the audio when showing those videos to others. For him, audio was irrelevant: it’s seeing that matters.</p>
<p>Being a highly-tuned seer is a Deaf Gain. As Kirkness explains in her book, this is “the notion that there are unique cognitive, creative and cultural benefits arising from Deaf ways of being in the world”. Her memoir illustrates this notion.</p>
<p>Kirkness grew up living next-door to her Deaf grandmother and grandfather and <a href="https://www.allenandunwin.com/browse/book/House-With-All-The-Lights-On-9781761069079/">The House With All The Lights On</a> is about the deep love they shared. In its very language, it’s hyper-aware of Kirkness’s role as a hearing person writing about the Deaf experience. </p>
<p>To be deaf (small “d”) is to be without hearing – but to be Deaf is to be part of a shared culture, who identify as culturally Deaf and share a <a href="https://theconversation.com/explainer-what-is-sign-language-21453">signing language</a>. (In Australia, that’s Auslan, or Australian sign language.)</p>
<blockquote>
<p>If I were to tell you a story in sign language – the story of my grandparents and me – I’d begin with a single finger touching my chest. My hands would form the signs for “grew up” and then “next door”, a flattened palm rising from my torso to eye level, followed by my index finger hooked over my thumb and turned over at the wrist like a key in an ignition. I’d use the signs for “my grandparents”: a clenched fist over my heart, and the letter signs “G, M, G” to represent “grand-mother-father”. Then, placing two fingers over my right ear, I’d use the sign for “deaf” to refer to them, and to describe myself, I’d use “hearing”: a single digit moved from beside the ear to rest below the mouth. I’d sign our closeness by interlocking my index fingers in the sign that doubles for “link” or “connection”. By puffing air from my lips, squinting my eyes slightly, and rocking my looped fingers back and forth, I’d place emphasis on the sign, the duration, direction and intensity of its delivery giving tone and shape to the meaning it makes.</p>
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<p>As a scholar specialising in d/Deaf people’s appreciation and perceptions of music, there is a deep rhythm to Kirkness’s telling. A musician, she’s an aural person, but having grown up as a conversationalist with and interpreter for her grandparents – and later, a sign-language teacher to children – she is, consequently, a visual person, too. </p>
<p>The sound of her prose in the reading-mind is sometimes magnificent. And the descriptions of her grandparents communicating – with her, with one another – is abundantly, respectfully detailed. Passages such as the one above are plentiful, bound to draw readers wholeheartedly into the narrative of her unique upbringing. </p>
<p>Not shying away from statistics, chronicles and definitions, the book is also instructive. And though Kirkness clearly appreciates the role Deaf culture plays in her life, it’s rarely biased. </p>
<p>By this I mean: if I had a friend whose baby was diagnosed deaf, and that friend had to make a decision about whether or not to give the baby a cochlear implant and therefore the gift of sound, I would give them this book with the intention of providing the pros and cons of Deafness. </p>
<p>A con might be particularised in the following passage, where Kirkness writes about experiencing rude comments and looks directed at her grandparents:</p>
<blockquote>
<p>Inside of me, pride and shame were housed in separate but neighbouring compartments. Much as I tried to ignore this fact, they grazed against one another often enough to produce a kind of reckoning in my adulthood. In all the years I tended to the fault line between my grandparents and the world – the contact zones that carried the eternal threat of turning hostile – I’d never thought to acknowledge the feeling that accumulated like sludge in my belly. My strategy was to bury it. Deny it. If I could keep anything negative from Nanny and Grandpa, I would.</p>
</blockquote>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/henry-lawson-and-judith-wright-were-deaf-but-theyre-rarely-acknowledged-as-disabled-writers-why-does-that-matter-208365">Henry Lawson and Judith Wright were deaf – but they’re rarely acknowledged as disabled writers. Why does that matter?</a>
</strong>
</em>
</p>
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<h2>Not own-voices, but valuable</h2>
<p>Reading a hearing person discuss the negative effects of growing up a grandchild of Deaf adults might raise alarm bells for some. In an own-voices story of Deafness, the story would be written by the Deaf person themselves. </p>
<p>Not following that etiquette is taboo from some points of view within marginalised communities. But I think it depends on your reading of the book. </p>
<p>Yes, this is a story that educates its readers about Deaf culture. But it’s also a story about familial love, told in the wake of loss after Kirkness’s grandfather died.</p>
<p>The passage continues:</p>
<blockquote>
<p>But the layers of feeling – the residue of the unexpressed – began to tug at me. I threw myself at the problem the best way I knew. I began to read. From the university library, I sought everything I could from the fields of Deaf and Disability Studies: books, journal articles, online forums. I finished one postgraduate degree and began another, all in the name of excavating something I barely had language for.</p>
</blockquote>
<p>There is a sense that signing is the best language for digging through emotion. But because it is not Kirkness’s native language, she’s had to work hard to learn to inhabit it – and it’s paid off. The House With All The Lights On is a product of that work – and a stunning act of gratitude.</p>
<p>Kirkness refuses to speak of her grandparents as if they are one unit, their Deafness shared. She consistently gives them individual agency. She has drawn them with thick lines, voluminous curves, edgy angles and various colours. She has deftly brought to the page what her Grandpa and Nanny have brought to her life – while also providing insight into Deafness with each anecdote.</p>
<p>One especially memorable sketch shows Granny learning to speak English: the chalk powder placed on the back of her hands, so when she put her lips close and the chalk either moved or did not, she could tell the difference between “p” and “b”. Granny then positioned her granddaughter’s hand on her throat and sounded out “m” and “n” and said, “I learned about sounds through feeling, see?” </p>
<p>Nanny was proud of her speech and of her ability to lip-read, whereas Grandpa only wanted to sign: “To appreciate him fully, I need visuals, for his voice was always carried in his hands.” Kirkness later describes those hands, which turned thousands of pages, as she described his relationship with books: </p>
<blockquote>
<p>Ever the autodidact, Grandpa was always reading. He’d frequently consult his encyclopaedias and reference books whenever he found himself wondering about one thing or another. It was a habit he developed in childhood, having found himself excluded, often unintentionally, from family conversations.</p>
</blockquote>
<p>The House With All The Lights On is a profound book on Deafness as identity, written by a hearing person who cannot divorce Deafness from the love she feels for her grandparents.</p>
<p>Kirkness’s book sits bravely and beautifully alongside Fiona Murphy’s <a href="https://www.textpublishing.com.au/books/the-shape-of-sound">The Shape of Sound</a> and Jessica White’s <a href="https://uwap.uwa.edu.au/products/hearing-maud">Hearing Maud</a> as part of a growing dialogue on deafness and hearing, and on Deafness and seeing. </p>
<p>It is one of the most touching, generous, superbly written family memoirs I’ve come across.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/covid-has-brought-auslan-into-the-spotlight-but-it-would-be-wrong-to-treat-the-language-as-a-hobby-or-fad-151667">COVID has brought Auslan into the spotlight, but it would be wrong to treat the language as a hobby or fad</a>
</strong>
</em>
</p>
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<h2>The injustices of growing up disabled</h2>
<p>Sam Drummond begins his memoir, <a href="https://affirmpress.com.au/browse/book/Sam-Drummond-Broke-9781922848475/">Broke</a>, with a scene that does not live in his own memory. His child-aged mother is playing the piano and her mother, who sits beside her, is contemplating how to tell her children she’s dying. </p>
<p>By beginning with his mother’s story, rather than his own, this prologue works as an explanation for why Drummond’s mother might have moved him and his brother around so much – and had so many failed romantic relationships. It’s a signpost to how we should read his story.</p>
<p>Drummond is a disability advocate and lawyer who lives with pseudoachondroplasia, a form of dwarfism that impacts bone growth and joint health. </p>
<p>The injustices of growing up disabled – schoolyard taunts, unfit to play sports, going for a job interview for the first time and striking out before a question is even asked – run throughout, in matter-of-fact prose that avoids the sentimental and resists overindulgences. </p>
<p>If I’m to trust the prologue, then the author’s reliance on a far-from-self-centred narrative is due to a focus on his mother, rather than himself. For example, after he leaves hospital for a surgery involving the breaking and resetting of his legs, he notices his mother’s back pain as she lifts him from the car into the wheelchair:</p>
<blockquote>
<p>I realised my Mum was mortal. People had been telling me my whole life that I was deficient in some way, if not directly then in the way they treated me. I had reassured myself I would always have Mum there to make up for my deficiencies. She was a fitness machine. Life had thrown mud at her and she had simply brushed it off. She was a survivor. Yet here I was, at a moment of complete reliance on her. My survival depended on her. And I had glimpsed a chink in her armour. This terrifying thought had not crossed my mind until then: even survivors have an end point.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/friday-essay-the-female-dwarf-disability-and-beauty-84844">Friday essay: the female dwarf, disability, and beauty</a>
</strong>
</em>
</p>
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<h2>Rising above it, but not a hero</h2>
<p>Drummond’s struggle with the physical and mental pain of his disability, and with multiple shifts in home and family set-up, is interesting. But at times I found it difficult to pinpoint the focus of this book.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=993&fit=crop&dpr=1 600w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=993&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=993&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1248&fit=crop&dpr=1 754w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1248&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1248&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">Sam Drummond, with his mum and brother.</span>
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<p>At one point I questioned if generational trauma was the focus, but Drummond doesn’t follow through enough with the causes and ripples of his grandmother’s untimely death or his grandfather’s PTSD. Mostly, I read it as a story of survival – of both his mother’s and his own.</p>
<p>Inspiration porn is a genre of memoir that shows the hardships of living with disability, chronic illness or inflicted trauma, so in the end the author can say, “See! I made it out the other side! And you can too if you keep trying!” While the disability community often shuns it, the masses tend to eat it up. </p>
<p>But though Broke follows inspiration porn’s rising-above-it-all plotline, Drummond mostly manages to avoid falling into this genre. His style is pragmatic, rather than straining to inspire.</p>
<p>When describing an afternoon at Centrelink, for example, he writes, </p>
<blockquote>
<p>“Mum. Why doesn’t anyone complain about waiting so long?”<br>
<br>
“Because we have no choice, darling.”<br>
<br>
I looked around at the elderly, the migrants, the other people in wheelchairs, the single mums. Their shirts hung out, their hair was not perfect, their skin was more leathery than Mum’s. But their shoes were now our shoes. The paperwork they filled out was the same as the sheets that lay on Mum’s lap. Their fates were linked to our fate.</p>
</blockquote>
<p>Drummond isn’t casting himself as a hero. He’s clear he is one of many coping with systemic prejudices and inadequate governmental support, helping to make up the “we” who are relegated to the end of the line. His opposite, the “they” who don’t even need to be in the line, are everywhere – even (and especially) in his friendship circle:</p>
<blockquote>
<p>Mum came in with a large plate of bread, jam and cream. He looked at the creation with an air of distrust. “What is it?” he asked.<br>
<br>
“Bread, jam and cream. It’s like scones, just with bread.”<br>
<br>
He ate a slice but stayed silent, shifting awkwardly at my feet. […] He had entered my world and I knew it was vastly different from his world of books and fruit and dinner at the dining room table. I had come to accept the differences. It was nice to be in the same world during school hours, but I would never have his life and I had to be okay with that, even if it made him sad or uncomfortable. […]
<br>
I turned back to the little pink telly.<br>
<br>
Mum came in and sat at the piano, looking wistfully at its closed cover.<br>
<br>
“Mum!” I yelled. “Can I have some more bread, jam and cream?”<br></p>
</blockquote>
<p>There’s the mother and the piano again: the foundations of his “we”. </p>
<p>In terms of showing the differences and similarities of the haves and haves-not – the “we"s and "they"s – Drummond’s book ticks all the necessary boxes. </p>
<p>But unlike The House With All The Lights On, Broke is not an unconflicted love letter to family. Drummond’s portrait of his mother is in the <a href="https://www.dailyartmagazine.com/edward-hoppers-women/">Edward Hopper style</a>: a tired woman carrying a bucketful of woes, who, at the end of the day, is lonely. His subject, however, doesn’t feel centred: she’s often hidden by the clutter of too many items in the room.</p><img src="https://counter.theconversation.com/content/209989/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Heather Taylor Johnson 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>
Jessica Kirkman introduces readers to her Deaf grandparents’ experience – and to Deaf culture – in her memoir. And Sam Drummond recalls growing up with pseudoachondroplasia (a form of dwarfism) in his.
Heather Taylor Johnson, Adjunct Research Fellow at the JM Coetzee Centre for Creative Practice, University of Adelaide
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/210973
2023-09-24T12:10:16Z
2023-09-24T12:10:16Z
How long will a loved one live? It’s difficult to hear, but harder not to know
<figure><img src="https://images.theconversation.com/files/549786/original/file-20230922-27-gg4746.jpg?ixlib=rb-1.1.0&rect=201%2C70%2C6508%2C4054&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Even for an experienced health-care professional, estimating the life expectancy of a patient with a serious illness is challenging.</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/how-long-will-a-loved-one-live-its-difficult-to-hear-but-harder-not-to-know" width="100%" height="400"></iframe>
<p>Planning for the future is difficult for people living with a life-limiting illness. Clinicians, based on their experience, can offer broad estimates of survival — in days to weeks, weeks to months, or months to years. However, patients and their care partners often want greater precision when arranging or making decisions about their care. </p>
<p>An accurate prediction of survival can enable earlier conversations about preferences and wishes at the end of life, and earlier introduction of palliative care. </p>
<p>However, even for an experienced clinician, <a href="https://doi.org/10.1371/journal.pone.0161407">estimating the life expectancy</a> of a patient with a serious illness <a href="https://doi.org/10.1136/bmj.320.7233.469">is challenging</a>. It requires large amounts of data and an understanding of the relationship between the patient’s baseline health, the complexity of their medical condition and how they respond to or progress with treatment. This is where predictive algorithms could help. </p>
<h2>A tool for timely conversations and planning</h2>
<p><a href="https://www.projectbiglife.ca/respect-elder-life">RESPECT (Risk Evaluation for Support: Predictions for Elder life in their Communities Tool) is a risk communication tool</a> powered by prediction algorithms that estimate individuals’ survival — that is, how long someone will live. It was developed by the Project Big Life Research Team and validated <a href="https://doi.org/10.1503/cmaj.200022">using health-care data collected on nearly one million older adults who received home and community care</a> or nursing home care in Ontario. </p>
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<iframe src="https://player.vimeo.com/video/539710931" width="500" height="281" frameborder="0" webkitallowfullscreen="" mozallowfullscreen="" allowfullscreen=""></iframe>
<figcaption><span class="caption">RESPECT is intended to help people plan for palliative and end-of-life care.</span></figcaption>
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<p>RESPECT was designed with patients’ information needs in mind, and with the intention of empowering patients and their care partners. By providing patients with data on the survival and experiences of other individuals who had similar disease journeys, the tool can help patients understand their own illness trajectory, have earlier conversations about their preferences and wishes, and advocate for the support they need. </p>
<h2>A tool for patients, care partners and clinicians</h2>
<p><a href="https://www.projectbiglife.ca/respect-elder-life">RESPECT</a> launched publicly on ProjectBigLife.ca in July 2021. <a href="https://www.projectbiglife.ca/">ProjectBigLife.ca</a> is home to several health calculators developed by the research team as a means of translating data and evidence into tools that can help Canadians think about their health and plan for their care. </p>
<p>Using the responses to 17 questions about their health and ability to care for themselves, RESPECT provides an estimate of a person’s survival based on information gathered on people who have similar characteristics. Older adults, their care partners and health care professionals who are uncertain about the life expectancy of someone living with a critical illness can use the calculator to gain a better understanding of their decline. </p>
<p>Beyond life expectancy, RESPECT reports measures of functional decline — for example, whether the patient is able to get around their house and engage in activities of daily living, like bathing and cooking, without any assistance. </p>
<p>A patient can use this information to discuss their care needs with their care partners and health-care providers. Similarly, health-care providers can use this tool to discuss with their patient what can be expected as the patient approaches the end of life, and plan for the supports that their patient may need.</p>
<p>RESPECT is also actively used in Ontario’s retirement homes and nursing homes. Many residents in these settings have a life expectancy of less than two years. Earlier conversations about the older person’s goals and wishes for their remaining life can enable the care team to provide the best quality of life and care for the individuals under their care.</p>
<h2>Sustainable infrastructure</h2>
<p>One of the goals of RESPECT is to provide sustainable infrastructure to study, learn and improve how we use predictive algorithms for end-of-life care.</p>
<p>Despite the benefits that are emerging from the early uses of RESPECT, many questions remain about when and how it can be most appropriately used. For example, poor numerical literacy — that is, a person’s understanding of numbers, mathematics and statistics — could lead to misinterpreting the estimate provided by RESPECT. While the resources supporting RESPECT were co-developed with patients and their care partners, more research is still needed to reduce such potential harms.</p>
<p>To ensure we optimize the benefits that can be gained from prediction algorithms like RESPECT, clinical epidemiologists Douglas Manuel and Justin Presseau, along with the co-authors of this article, have created the RESPECT Learning Health System — a network of care partners, researchers and health-care professionals collaborating to address these challenges. We combine research and practice to sustainably study, learn and improve end-of-life care and experience through predictive algorithms.</p>
<h2>Identification is just the first step</h2>
<p>Only <a href="https://www.cihi.ca/sites/default/files/document/access-to-palliative-care-in-canada-2023-report-en.pdf">58 per cent of people who die in Canada</a> receive some form of palliative care prior to death. Few (13 per cent) are able to die at home with the support of palliative home care. </p>
<p>In deepening our understanding of frailty and decline, RESPECT may help clinicians, patients and their care partners be prepared for a poor prognosis and help develop a personalized plan for their care. </p>
<p>However, to improve end-of-life care delivery in Canada and enable Canadians to die with dignity, more investment is still needed within our formal health-care system to meet the need of individuals at the end of life.</p><img src="https://counter.theconversation.com/content/210973/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span> Lysanne Lessard receives funding from Canadian Institutes of Health Research for research related to the RESPECT Learning Health System.
Lessard is a member of the University of Ottawa's LIFE Research Institute.</span></em></p><p class="fine-print"><em><span>Amy T. Hsu receives funding from the Canadian Institutes of Health Research for research related to the RESPECT Calculator. </span></em></p><p class="fine-print"><em><span>Peter Tanuseputro receives funding from the Canadian Institutes of Health Research for research related to the RESPECT calculator. </span></em></p><p class="fine-print"><em><span>Sampath Bemgal 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>
An accurate prediction of survival can enable earlier conversations about preferences and wishes at the end of life, and earlier introduction of palliative care.
Lysanne Lessard, Associate Professor, Telfer School of Management, L’Université d’Ottawa/University of Ottawa
Amy T. Hsu, Brain and Mind-Bruyère Research Institute Chair in Primary Health Care in Dementia, L’Université d’Ottawa/University of Ottawa
Peter Tanuseputro, Associate Professor, Division of Palliative Care, Department of Medicine, L’Université d’Ottawa/University of Ottawa
Sampath Bemgal, Assistant Professor, Management Information Systems, University of New Brunswick
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/210755
2023-08-07T16:09:40Z
2023-08-07T16:09:40Z
Exercising during a hospital stay linked with faster recovery – new research
<figure><img src="https://images.theconversation.com/files/541207/original/file-20230804-29-q1q0wv.jpg?ixlib=rb-1.1.0&rect=48%2C0%2C5400%2C3597&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">As little as 25 minutes of walking a day had benefits.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/nurses-well-good-taken-care-elderly-1627720162">Photo_imagery/ Shutterstock</a></span></figcaption></figure><p>When a person is admitted to hospital for any reason – whether due to illness or to undergo surgery – it’s expected they will spend the duration of their stay resting in bed while they recover. While rest is important, too much sitting or bed rest can actually make matters worse, with <a href="https://journals.lww.com/ccmjournal/fulltext/2009/10001/Consequences_of_bed_rest.19.aspx?casa_token=rSkaD_UMbOAAAAAA:6gylXSOMr6ioHtEpUpaa3g3bdrYbt0yHHV8mcWXLRRtCGq_KEzrz9Uw-Dw7ZeLuE9nel-R9N9v0c0n-VjlQx-CV5tWjy5gl8eA">research showing</a> it can slow recovery and lead to more health problems.</p>
<p>Our <a href="https://bjsm.bmj.com/content/early/2023/05/22/bjsports-2022-106409">latest study</a> shows that physical activity may help to counteract the effects of bed rest. We found that even just 25 minutes a day of walking while in hospital can significantly speed up recovery for older adults – and it may also prevent new hospital stays in the future.</p>
<p>To conduct our study, we analysed data from 19 clinical trials that looked at the effect of staying active in the hospital on a participant’s physical function, their risk of subsequent health problems (such as falls), and also risk of hospital readmission. </p>
<p>In total, we looked at data from 3,000 older adults aged 55 to 78, who were admitted to a hospital intensive care unit or general medicine ward for seven to 42 days because of an acute illness (such as respiratory failure) or for surgery. We also looked at different types and amounts of physical activity, from simple bedside stretching exercises to walking programmes, as well as daily strength and aerobic exercises. </p>
<p>Our analysis revealed that older adults who did light physical activity (such as walking) while staying in hospital had better physical function by the end of their hospital stay, and a 10% lower risk of being readmitted to hospital within 30 days of discharge, compared with those who did not. The more activity a person did – and the more intense that activity was – the better their physical function and the lower their risk of being readmitted.</p>
<p>Overall, we found the optimal amount of activity was around 40 minutes per day of walking at moderate intensity – that is, walking at a speed that makes you slightly out of breath. </p>
<p>Importantly, older adults who remained active in the hospital were also 10% less likely to experience falls, disability or death after discharge, compared with those who remained inactive. This suggests physical activity may protect against the harmful effect of too much bed rest during hospital stays. </p>
<figure class="align-center ">
<img alt="A young female nurse helps an older patient perform an exercises using a resistance band." src="https://images.theconversation.com/files/541208/original/file-20230804-23-p7nvgb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/541208/original/file-20230804-23-p7nvgb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/541208/original/file-20230804-23-p7nvgb.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/541208/original/file-20230804-23-p7nvgb.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/541208/original/file-20230804-23-p7nvgb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/541208/original/file-20230804-23-p7nvgb.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/541208/original/file-20230804-23-p7nvgb.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">Strength exercises during a hospital stay were also shown to be beneficial.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-physical-therapist-caregiver-assisting-mature-2303029337">PanuShot/ Shutterstock</a></span>
</figcaption>
</figure>
<p>Other studies have also shown the benefits of physical activity during a hospital stay. For instance, <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0223185">research shows</a> that early mobility therapy for critically ill and unconscious patients staying in intensive care units have faster recovery, better physical function, and more ventilator-free days.</p>
<p>Our study adds to this evidence by identifying optimal exercise types, as well as the amount of activity needed to see benefits.</p>
<h2>The importance of movement</h2>
<p>The idea that we should rest in bed while in hospital – and that activity could hamper recuperation – has long been a misconception. In fact, we have known since the 1940s about the <a href="https://pubmed.ncbi.nlm.nih.gov/18860463/">negative effects of bed rest</a>. </p>
<p>Since then, a lot of bed rest research has been conducted – mainly to understand what <a href="https://link.springer.com/article/10.1007/s00421-007-0474-z">effect space exploration</a> may have on the body, since astronauts spend long periods in a weightless environment. Surprisingly, within hours of bed rest, we start to lose <a href="https://pubmed.ncbi.nlm.nih.gov/15900645/">muscle and bone mass</a>. This leads to <a href="https://journals.lww.com/ccmjournal/fulltext/2009/10001/Consequences_of_bed_rest.19.aspx?casa_token=rSkaD_UMbOAAAAAA:6gylXSOMr6ioHtEpUpaa3g3bdrYbt0yHHV8mcWXLRRtCGq_KEzrz9Uw-Dw7ZeLuE9nel-R9N9v0c0n-VjlQx-CV5tWjy5gl8eA">deconditioning</a>, loss of strength, and ultimately a reduced ability to do daily tasks independently.</p>
<p><a href="https://www.nursingtimes.net/clinical-archive/gastroenterology/effects-of-bedrest-3-gastrointestinal-endocrine-and-nervous-systems-21-01-2019">Prolonged bed rest</a> also decreases blood flow and lung capacity and increases the risk of deep vein thrombosis. It can also lead to pressure sores and constipation and incontinence.</p>
<p>But physical activity helps to prevent deconditioning and <a href="https://pubmed.ncbi.nlm.nih.gov/10822903">preserve the muscle strength</a> needed for mobility and daily tasks. It also keeps the <a href="https://www.sciencedirect.com/science/article/pii/S0002914911027597?casa_token=7ZHp3vx8aR0AAAAA:M_wf6wL7PaIL9e7EjOeLMPZf1XERBIk29f2vnw5LI2SzTTyvZqQqLnAt1PDMmxd8EDeblowiDTeH">cardiovascular system</a> working as it should, and helps prevent <a href="https://www.thieme-connect.com/products/ejournals/html/10.1055/s-0038-1673636?casa_token=ZkSINK5itBQAAAAA:TEQ6Jx4BUTCTWw05F_kmYgCaDdhcArY30fmcqMN8jQ4vLPwWz8C3JZk4CQuRd8WlMzJ9j6OPMcr3dXqS">deep vein thrombosis</a> and <a href="https://www.ingentaconnect.com/content/ben/cpd/2018/00000024/00000018/art00002">gastrointestinal problems</a>. </p>
<p>And the benefits of movement aren’t only physical. Exercise is shown to relieve <a href="https://bjsm.bmj.com/content/early/2023/07/11/bjsports-2022-106195">boredom and improve mood</a>. It also connects patients with staff and caregivers, <a href="https://onlinelibrary.wiley.com/doi/10.1111/jocn.15994">improving mental health</a>.</p>
<p>Importantly, being active while in the hospital will help patients remain active in their daily lives, which is one of the most effective ways to <a href="https://www.who.int/publications/i/item/9789240015128">stay healthy</a> once back at home. This may explain why our study found that those who were active during a hospital stay had lower readmission rates.</p>
<p>So, next time you need to go to the hospital, pack your walking shoes. There’s no “one size fits all” solution, but every movement counts. The key is to make sure you’re doing activities suited to your abilities. If you’re recovering from surgery or have a heart condition, be sure to start slowly with exercise and then increase it gradually.</p>
<p>Even small things – such as getting out of bed and moving to a nearby chair to rest, or going for a short stroll to the toilet or cafeteria – are a good start. If you aren’t sure where to begin, be sure to talk to your GP, nurse or even a physiotherapist who can recommend a tailored routine.</p><img src="https://counter.theconversation.com/content/210755/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Borja del Pozo Cruz receives funding from the Government of Andalusia (Spain), Research Talent Recruitment Program (EMERGIA 2020/00158)</span></em></p><p class="fine-print"><em><span>Sebastien Chastin 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>
Patients who exercised during a hospital stay had a 10% lower risk of being readmitted to hospital within 30 days of discharge.
Sebastien Chastin, Professor Health Behaviour Dynamics of People, Places and Systems, Glasgow Caledonian University
Borja del Pozo Cruz, Investigador principal en Ciencias de la Salud, Universidad de Cádiz
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/205278
2023-05-17T18:04:19Z
2023-05-17T18:04:19Z
MAID’s evolving ethical tensions: Does it make dying with dignity easier than living with dignity?
<figure><img src="https://images.theconversation.com/files/526437/original/file-20230516-17-xndwxx.jpg?ixlib=rb-1.1.0&rect=127%2C82%2C4446%2C3016&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">There is debate about whether a health-care worker can ethically participate in both palliative care and the MAID program. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Medical assistance in dying (MAID) has <a href="https://doi.org/10.1007/s10912-022-09764-z">received lots of media attention over the past few years</a>. This is especially true as the Canadian government considers expanding eligibility for people whose sole underlying condition is a mental illness. This has led to <a href="https://theconversation.com/canada-delays-expanding-medical-assistance-in-dying-to-include-mental-illness-but-its-still-a-policy-built-on-quicksand-196264">increased concerns about the ethics of MAID</a>.</p>
<p>Even in its present form, MAID is fraught with ethical tensions. As scholars <a href="https://doi.org/10.1016/j.jrurstud.2022.09.011">engaged in research on MAID</a>, we have heard about these tensions firsthand through interviews with physicians and nurses who provide MAID-related care, clinical ethicists who perform MAID-related consults, family members of patients who have received MAID and patients who have requested MAID. </p>
<p>From these conversations, we highlight three emerging tensions: </p>
<ol>
<li>Palliative care versus MAID provision; </li>
<li>Transparency versus privacy; and </li>
<li>Providing a dignified death versus a dignified life. </li>
</ol>
<p>These tensions can contribute to unpredictability in health service provision, strained relationships, moral distress, harm for prospective patients and the erosion of public trust.</p>
<h2>Palliative care vs. MAID provision</h2>
<p>There is debate about whether a health-care worker can participate in both palliative care and the MAID program. </p>
<p>Palliative care involves efforts to improve the <a href="https://www.virtualhospice.ca/Assets/MAiD_Report_Final_October_15_2018_20181218165246.pdf">quality of life of patients facing serious or life-threatening illness by preventing or relieving suffering through early identification, assessment and treatment of pain, including physical, psychosocial and spiritual pain</a>. MAID, on the other hand, provides patients experiencing intolerable suffering the option to end their lives with the assistance of a doctor or nurse practitioner.</p>
<p>Some people see the two services as <a href="https://healthydebate.ca/2020/06/topic/palliative-care-and-maid/">co-existing within end-of-life care</a>. Others view them as having <a href="https://www.chpca.ca/news/chpca-and-cspcp-joint-call-to-action/">incompatible intentions and goals</a>, and may see the two services as being in conflict. </p>
<figure class="align-center ">
<img alt="A man in a white coat, stethoscope and face mask sitting in a chair and looking upset" src="https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.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">Ethical conflicts can potentially place strain on professional relationships between MAID providers and palliative care teams or cause moral distress for palliative care providers.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>For instance, as one medical professional informed us, pharmaceuticals that might be provided to relieve pain during palliative care could undermine cognitive capacity and limit a patient’s ability to provide consent to MAID:</p>
<blockquote>
<p>“It was brutal. I knew at that time we wouldn’t be able to do the provision because we would have to medicate her so much… then we’d have to reverse it to get consent, and that was really hard.”</p>
</blockquote>
<p>Examples like this reveal the tensions that medical professionals might face if they seek to provide both palliative care and MAID. We also heard that some palliative care professionals perceive MAID requests as a failure of their efforts to provide quality palliative care. </p>
<p>This can potentially place strain on professional relationships between MAID providers and palliative care teams, or cause moral distress for palliative care providers.</p>
<h2>Transparency vs. privacy</h2>
<p>The federal government notes the importance of <a href="https://www.justice.gc.ca/eng/cj-jp/ad-am/bk-di.html">transparency for the improvement of MAID and maintenance of public trust</a>. However, patients and care providers sometimes have strict privacy concerns, wanting their participation in MAID kept confidential because of disapproving family, colleagues or community members. </p>
<figure class="align-center ">
<img alt="A man in a hospital bed and a woman with her arm around him, both looking at a man in a white coat seen from behind" src="https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.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">Patients and care providers sometimes have strict privacy concerns, wanting their participation in MAID kept confidential because of disapproving family, colleagues or community members.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>This is particularly true in smaller communities where privacy may be more limited, health-care professionals are <a href="https://doi.org/10.1111/nin.12308">highly visible</a> and people may be concerned about <a href="https://edmontonjournal.com/news/local-news/rural-alberta-faces-more-end-of-life-care-challenges-conference">MAID-related stigma</a>.</p>
<p>One patient in our study had family members insist on keeping their cause of death a secret. Another participant spoke about a patient’s request for the MAID team to do the provision at a long-term care home without letting the staff, family or other residents know. </p>
<p>When medical providers are asked to assist patients in such secrecy, transparency may become compromised.</p>
<blockquote>
<p>“Staff had to really balance transparency with confidentiality… One of those transparency pieces, very clearly from the government, was accurate recording, so that there was nothing secret… (But) we’ve had patients who have said, ‘I don’t want my family to know.’ But they’re going to find out what the cause of death was; the death certificate is very clear.”</p>
</blockquote>
<p>In cases like this, medical professionals are placed in the difficult position of not being able to accommodate privacy requests of patients or family members, as doing so could undermine ethical obligations of transparency and professional accountability.</p>
<h2>A dignified death vs. a dignified life</h2>
<p>MAID is often celebrated for supporting <a href="https://www.dyingwithdignity.ca/">suffering patients to exercise control and die with dignity</a>. </p>
<p>With the passage of <a href="https://www.justice.gc.ca/eng/csj-sjc/pl/charter-charte/c7.html">Bill C-7</a>, which removed the requirement of a reasonably foreseeable death, Canadians are now applying for MAID when suffering is impacted by socioeconomic factors such as inadequate housing, medical care, food security or income supports. </p>
<p>As a result, there has been growing concern about offering this service in a limited social welfare state <a href="https://www.thestar.com/opinion/contributors/2021/02/11/if-medically-assisted-death-becomes-more-accessible-for-canadians-we-have-a-moral-obligation-to-make-living-well-through-housing-mental-health-supports-accessible-too.html?rf">that does not provide the conditions for people with an illness or disability to live with dignity</a>.</p>
<p>There have been news reports of people being offered MAID when they just needed assistance to live. This has included a <a href="https://www.ctvnews.ca/politics/paralympian-trying-to-get-wheelchair-ramp-says-veterans-affairs-employee-offered-her-assisted-dying-1.6179325">veteran who merely required a wheelchair ramp</a>, individuals who did not have access to food or <a href="https://www.ctvnews.ca/health/woman-with-chemical-sensitivities-chose-medically-assisted-death-after-failed-bid-to-get-better-housing-1.5860579">adequate housing</a> and <a href="https://www.ctvnews.ca/health/the-solution-is-assisted-life-offered-death-terminally-ill-ont-man-files-lawsuit-1.3845190">patients who needed home care</a>. </p>
<p>We have also recently seen <a href="https://www.ctvnews.ca/health/the-number-of-medically-assisted-deaths-in-canada-s-prisons-a-concern-for-some-experts-1.6380440">reports of prisoners who may be requesting MAID to escape the harsh conditions of prison life</a>.</p>
<p>In our research, a participant told us about an individual who had received MAID and might have otherwise benefited from existing programs:</p>
<blockquote>
<p>“There was a (patient) in our community who went through MAID… and his diagnosis was heart failure… (But) he never came to our program and I felt there were a lot of things that we can actually do with these heart failure patients to give them good quality of life.”</p>
</blockquote>
<p>Canadian legal scholar Trudo Lemmens has similarly noted <a href="https://www.cbc.ca/news/opinion/opinion-medical-assistance-in-dying-maid-legislation-1.5790710">that MAID may be quicker to access than certain medical and financial supports</a>, including, for instance, access to specialized long-term care, specialized pain clinics and the <a href="https://www.canada.ca/en/services/benefits/publicpensions/cpp/cpp-disability-benefit.html">Canada Pension Plan Disability Benefits</a>.</p>
<p>“It is crucial that individuals are not placed in a position <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5349713/">where MAID will be seen as the only alternative to suffering</a>.</p>
<p>Unfortunately, we heard from study participants that this issue may be further exacerbated in rural areas with limited access to palliative care. </p>
<blockquote>
<p>"I think some of those patients don’t get the same palliative care that somebody in town would and so maybe they’re opting to do MAID sooner than somebody else would… maybe they didn’t really want to do it but they kind of felt that it was their only option.”</p>
</blockquote>
<p>Another study has already corroborated this concern, noting there is an <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8302435/">inadequate provision of palliative care for those requesting MAID</a>. This is alarming as it signals the reality that MAID requests are sometimes made not out of necessity, but rather due to unmet needs.</p>
<h2>Moving forward</h2>
<p>These tensions surrounding MAID place staff in complex ethical predicaments and are deserving of greater attention. Current policy and legislation do not adequately address how they ought to navigate potential conflicts between palliative care and MAID, between transparency and privacy, or how to best handle MAID requests being made due to unmet socioeconomic or medical needs. </p>
<p>This situation is made worse by the fact that some of our participants felt ill-prepared to step into a MAID-related role due to limited training or support.</p>
<p>We encourage the federal government to reconsider its role in improving the quality of life of its citizens. In many situations, Bill C-7 has made “dying with dignity” easier than “living with dignity.” It is ethically problematic if a state is more willing to facilitate death than to provide the necessities of life.</p><img src="https://counter.theconversation.com/content/205278/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julia Brassolotto receives funding from Alberta Innovates and the Social Sciences and Humanities Research Council (SSHRC). </span></em></p><p class="fine-print"><em><span>Alessandro Manduca-Barone and Monique Sedgwick do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
Bill C-7 has created ethical tensions between MAID providers and palliative care, between transparency and patient privacy, and between offering a dignified death rather than a dignified life.
Alessandro Manduca-Barone, Research Associate - Faculty of Health Sciences, University of Lethbridge
Julia Brassolotto, Associate Professor, Public Health and Alberta Innovates Research Chair, University of Lethbridge
Monique Sedgwick, Associate Professor of Nursing, University of Lethbridge
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/203988
2023-04-24T16:14:01Z
2023-04-24T16:14:01Z
The dirty truth about your phone – and why you need to stop scrolling in the bathroom
<figure><img src="https://images.theconversation.com/files/522188/original/file-20230420-1700-nz53nk.png?ixlib=rb-1.1.0&rect=14%2C26%2C1970%2C1461&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Using your phone when you're on the toilet is a horrid habit. </span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/cropped-image-beautiful-young-woman-using-488716744">Canva/Shutterstock</a></span></figcaption></figure><p>We carry them everywhere, take them to bed, to the bathroom and for many people they’re the first thing they see in the morning – more than 90% of the world owns or uses a <a href="https://doi.org/10.3390/microorganisms11020523">mobile phone</a> and many of us couldn’t manage without one.</p>
<p>But while health concerns about phones use usually focus on the <a href="https://theconversation.com/why-using-a-mobile-phone-while-driving-is-so-dangerous-even-when-youre-hands-free-71833">distraction they can cause</a> while driving, the possible effects of <a href="https://theconversation.com/theres-no-evidence-5g-is-going-to-harm-our-health-so-lets-stop-worrying-about-it-120501">radiofrequency exposure</a>, or just how <a href="https://theconversation.com/seven-tips-for-a-healthier-relationship-with-your-phone-202215">addictive they can be</a>. The microbial infection risk of your phone is much less appreciated – <a href="https://www.nature.com/articles/s41598-021-93622-w">but it’s very real</a>.</p>
<p><a href="https://yougov.co.uk/topics/society/articles-reports/2019/02/28/most-britons-use-their-phone-toilet">A 2019 survey</a> found that most people in the UK use their phones on the toilet. So it’s not surprising to discover studies have found our mobile phones to be <a href="https://cals.arizona.edu/news/why-your-cellphone-has-more-germs-toilet">dirtier that toilet seats</a>. </p>
<p>We give our phones to children to play with (who aren’t exactly well known for their hygiene). We also eat while using our phones and put them down on all sorts of (dirty) surfaces. All of which can transfer microbes onto your phone along with food deposits for those microbes to eat. </p>
<p>It’s been estimated that people touch their phone <a href="https://www.dailymail.co.uk/news/article-2276752/Mobile-users-leave-phone-minutes-check-150-times-day.html">hundreds</a> if not <a href="https://dscout.com/people-nerds/mobile-touches">thousands</a> of times a day. And while many of us wash our hands regularly after say, going to the bathroom, cooking, cleaning, or gardening, we are much less likely to consider washing our hands after <a href="https://www2.deloitte.com/content/dam/insights/articles/us175371_tmt_connectivity-and-mobile-trends-interactive-landing-page/DI_Connectivity-mobile-trends-2022.pdf">touching our phones</a>. But given how disgusting and germ-infested phones can be, maybe it’s time to think more about <a href="https://pubmed.ncbi.nlm.nih.gov/19267892/">mobile phone hygiene</a>.</p>
<h2>Germs, bacteria, viruses</h2>
<p>Hands pick up bacteria and viruses all the time and are <a href="https://www.cdc.gov/handwashing/when-how-handwashing.html">recognised as a route</a> for <a href="https://www.ncbi.nlm.nih.gov/books/NBK144014/#parti_ch7.s3">acquiring infection</a>. So too are the phones we touch. <a href="https://www.nature.com/articles/s41598-022-14118-9">A number</a> of <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7196688/">studies</a> conducted on the microbiological colonisation of mobile phones show that they can be contaminated with many different kinds of potentially pathogenic bacteria.</p>
<p>These include the diarrhoea-inducing <em>E. coli</em> (which, by the way, comes from human poo) and the skin-infecting <em>Staphylococcus</em>, as well as <em>Actinobacteria</em>, which can cause tuberculosis and diphtheria, <em>Citrobacter</em>, which can lead to painful urinary tract infections, and <em>Enterococcus</em>, which is known to cause meningitis. <em>Klebsiella</em>, <em>Micrococcus</em>, <em>Proteus</em>, <em>Pseudomonas</em> and <em>Streptococcus</em> have also been found on phones and all can have equally nasty effects on humans.</p>
<p><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6130244/">Research</a> has found that many pathogens on phones are often antibiotic resistant, meaning they can’t be treated with conventional drugs. This is worrying as these bacteria can cause skin, gut and respiratory infections that can be life-threatening. </p>
<p>Research has also found that even if you clean your phone with antibacterial wipes or alcohol it can still be recolonised by microorganisms, indicating that <a href="https://www.mdpi.com/2076-2607/11/2/523">sanitisation</a> must be a <a href="https://www.nature.com/articles/s41598-022-14118-9">regular process</a>. </p>
<figure class="align-center ">
<img alt="Woman wearing yellow jumper cleaning phone screen with a wipe." src="https://images.theconversation.com/files/522184/original/file-20230420-23-ne9bdl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/522184/original/file-20230420-23-ne9bdl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/522184/original/file-20230420-23-ne9bdl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/522184/original/file-20230420-23-ne9bdl.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/522184/original/file-20230420-23-ne9bdl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/522184/original/file-20230420-23-ne9bdl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/522184/original/file-20230420-23-ne9bdl.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">The importance of cleaning your phone and how to do it safely.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/coronavirus-global-epidemic-woman-disinfecting-phone-1677416521">Volurol/Shutterstock</a></span>
</figcaption>
</figure>
<p>Phones contain plastic which can harbour and <a href="https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(15)01034-4/fulltext">transmit viruses</a> some of which (the common cold virus) can live on hard plastic surfaces for up to a week. Other viruses such as COVID-19, rotavirus (a highly infectious stomach bug that typically affects babies and young children), influenza and norovirus – which can cause serious respiratory and gut infections – can persist in an infectable form for several days. </p>
<p>Indeed, since the beginning of the COVID pandemic, the US Centers for Disease Control and Prevention has introduced <a href="https://www.cdc.gov/hygiene/cleaning/cleaning-your-home.html">guidelines for cleaning and disinfecting mobile phones</a> – which, along with door handles, cash machines and <a href="https://theconversation.com/from-the-bed-sheets-to-the-tv-remote-a-microbiologist-reveals-the-shocking-truth-about-dirt-and-germs-in-hotel-rooms-202195">lift buttons</a>, are considered <a href="https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(15)01034-4/fulltext">reservoirs of infection</a>. </p>
<p>In particular, concern has been raised about the role mobile phones can play in the spread of infectious microbes in <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7196688/">hospital and healthcare settings</a>, as well as in <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466825/">schools</a>. </p>
<h2>Clean your phone</h2>
<p>So it’s clear that you need to start cleaning your phone regularly. The US Federal Communications Commission actually recommends <a href="https://www.fcc.gov/consumers/guides/how-sanitize-your-phone-and-other-devices">daily sanitation</a> of your phone and other devices – not least because we are still within an active COVID-19 pandemic and the virus can survive for several days on hard plastic surfaces. </p>
<p>Use <a href="https://www.fcc.gov/consumers/guides/how-sanitize-your-phone-and-other-devices">alcohol-based wipes or sprays</a>. They need to contain at least 70% alcohol to disinfect phone casings and touch screens, and it needs to be done every day if possible. </p>
<p>Do not spray sanitisers directly onto the phone and keep liquids away from connection points or other phone openings. Absolutely avoid using bleach or abrasive cleaners. And wash your hands thoroughly after you’ve finished cleaning.</p>
<p>Thinking about how you handle your phone will also help to avoid it becoming colonised with germs. When not at home, keep your phone in your pocket, or bag and use a disposable paper list of to-do items, rather than constantly consulting your phone. Touch your phone with clean hands – washed with soap and water or disinfected with alcohol-based hand sanitiser. </p>
<p>There are other things you can do to avoid your phone becoming a source of viruses. Do not share your phone with others if you have any infection, or have not first sanitised it. If children are allowed to play with your phone, sanitise it as soon as possible afterwards. </p>
<p>And get in the habit of putting your phone away when not in use, then sanitising or washing your hands. You might also want to occasionally sanitise your phone charger when you are cleaning your phone.</p><img src="https://counter.theconversation.com/content/203988/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Primrose Freestone 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>
Your mobile phone is 10 times dirtier than a toilet seat. Here’s what to do about it.
Primrose Freestone, Senior Lecturer in Clinical Microbiology, University of Leicester
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/199166
2023-02-27T12:05:07Z
2023-02-27T12:05:07Z
Swimming pools v wild swimming – a germs expert on which is worse
<figure><img src="https://images.theconversation.com/files/511428/original/file-20230221-18-axh3j6.jpg?ixlib=rb-1.1.0&rect=0%2C40%2C5464%2C3432&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.alamy.com/wild-or-open-water-women-swimmers-wearing-wetsuits-with-buoyancy-floats-enter-the-firth-of-forth-sea-north-berwick-east-lothian-scotland-uk-image416629506.html?imageid=FCA7E8A4-6ACE-4DCC-94AB-64CDB9B6F5C2&p=373051&pn=1&searchId=bf5dfdc822516e443cf4c25d554e4dd2&searchtype=0"> Sally Anderson/Alamy Stock Photo</a></span></figcaption></figure><p><a href="https://www.bbc.com/travel/article/20210603-why-wild-swimming-is-britains-new-craze">Wild swimming</a> has grown massively in popularity in recent times. Not only is swimming outdoors a pleasant way to enjoy the sunshine, fresh air and green leafy surroundings, it can also <a href="https://www.swimnow.co.uk/the-psychology-of-swimming/why-do-humans-like-to-swim/">help to</a> relieve stress and elevate our endorphins. This creates a sense of wellbeing as well as burning calories and exercising muscles. </p>
<p>But along with the joys of outdoor swimming come some dangers. Not only are wild swimmers more at risk from tides, currents and swells, there can also be nasty bugs and bacteria lurking in the water. And with <a href="https://www.gov.uk/government/news/sewage-in-water-a-growing-public-health-problem">untreated sewage</a> regularly flowing into seas, rivers and lakes across the country, it can be hard to find a safe spot for a paddle.</p>
<p>Of course, swimming in a pool comes with its <a href="https://www.cdc.gov/dotw/rwis/index.html">own set of risks</a>. Urinary tract infections, ear infections and tummy bugs are the most common illnesses caught here. <a href="https://www.iflscience.com/a-grim-amount-of-people-pee-in-the-pool-heres-why-you-shouldnt-63515#:%7E:text=In%20one%20survey%2C%20at%20least,as%20high%20as%2040%20percent.">Dirty pools</a> can also cause your eyes to sting and harbour all sorts of bacteria and germs – including urine, faeces and sweat. In many ways, swimming pools are like a <a href="https://theconversation.com/faeces-urine-and-sweat-just-how-gross-are-hot-tubs-a-microbiologist-explains-198367">big bath</a> filled with lots of strangers.</p>
<p>But while it’s clear that swimming in outdoor waters carries different risks from swimming in a pool, the question of where’s safest to swim may not seem immediately obvious. So where’s cleanest for a dip: swimming pools, or rivers, lakes, canals and the sea? Let’s look at the evidence.</p>
<h2>Toxic waters</h2>
<p>Unlike swimming pools where waters are carefully monitored, outdoor waters are constantly changing in composition. This means that chemicals can leach into wild waters from nearby farms or industrial areas, animals can defecate in water, and in certain areas human sewage may be legally or otherwise dumped into the water (if you can see pipes, do not get in). </p>
<p>There may not be signposts warning of local dangers, and the presence of toxic agents might not be obvious. When in doubt about the <a href="https://www.gov.uk/government/publications/swim-healthy-leaflet/swim-healthy#:%7E:text=designated%20bathing%20waters.-,Health%20risks,are%20more%20susceptible%20to%20infection">chemical safety of outdoor waters</a>, it’s better to not enter them. If the water <a href="https://outdoorswimmer.com/featured/wild-swimming-how-to-spot-a-clean-river/">doesn’t look or smell right</a>, trust your instinct.</p>
<p>There are also natural hazards to outdoor waters compared with pools, especially in the summer. <a href="https://consult.environment-agency.gov.uk/cumbria-and-lancashire/blue-green-algae-in-cumbria-and-lancashire/user_uploads/blue-green-algae-leaflet.pdf">Blue–green algae</a> is a type of bacteria naturally found in lake ecosystems. In warm summers, the algae tends to multiply and form a <a href="https://www.theguardian.com/uk-news/2022/aug/24/it-stinks-lake-windermere-plagued-by-blue-green-algae-as-toxic-as-cobra-venom">powdery green scum</a> (known as a bloom) on the surface of the lake. This blue-green algae bloom can release toxins which are harmful to humans and occasionally <a href="https://www.bluecross.org.uk/advice/dog/blue-green-algae-and-its-dangers-to-dogs">lethal to pets</a>.<br>
Swimming in or swallowing water containing toxin-releasing algal blooms can lead to skin rashes, eye irritation, severe gastrointestinal upset, fever, and muscle and joint pain.</p>
<h2>Bacteria and viruses</h2>
<p>Diarrhoea is the most common illness linked to open-water swimming, often due to sewage contamination. You become ill if you swallow <a href="https://www.cdc.gov/healthywater/swimming/swimmers/rwi/diarrheal-illness.html">contaminated water</a>, which can contain bacteria and viruses such as E.coli and Norovirus. </p>
<p>Rats living in sewers adjacent to freshwater rivers or canals can also carry in their urine the bacterial pathogen Leptospira, which causes <a href="https://www.nhs.uk/conditions/leptospirosis/">Leptospirosis</a> (Weil’s disease). The infection occurs if soil or water from a lake, river or canal that contains urine from infected animals is swallowed, gets in a swimmer’s eyes or a cut. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/faeces-urine-and-sweat-just-how-gross-are-hot-tubs-a-microbiologist-explains-198367">Faeces, urine and sweat – just how gross are hot tubs? A microbiologist explains</a>
</strong>
</em>
</p>
<hr>
<p>Leptospirosis can cause liver and kidney damage, and may be fatal if left untreated. If you develop flu or jaundice symptoms up to two weeks after swimming in a river or canal, it may be a good idea to ask your doctor for a Leptospirosis test.</p>
<p>As for the sea, <a href="https://evidence.nihr.ac.uk/alert/swimming-in-seawater-is-linked-with-an-increased-chance-of-some-illnesses/">a 2018 study</a> found that people swimming in seawater were more likely to experience infections of the ear, nose, throat and gastrointestinal system than those who stayed on the beach. So it’s a good idea to wash after swimming in any outdoor waters, and certainly before eating food.</p>
<h2>The verdict</h2>
<p>When you add it all up, even with the possibility of people peeing and pooping in the pool, a managed swimming pool will always be a safer environment for a swim. Especially when you consider things like jellyfish stings and the additional risks that come with <a href="https://rnli.org/safety/know-the-risks/cold-water-shock">swimming in cold water</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/511432/original/file-20230221-18-yofimv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Man swimming in pool." src="https://images.theconversation.com/files/511432/original/file-20230221-18-yofimv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/511432/original/file-20230221-18-yofimv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/511432/original/file-20230221-18-yofimv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/511432/original/file-20230221-18-yofimv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/511432/original/file-20230221-18-yofimv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/511432/original/file-20230221-18-yofimv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/511432/original/file-20230221-18-yofimv.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">Swimming pools are a safer bet.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/fit-swimmer-training-swimming-pool-professional-516633376">Jacob Lund/Shutterstock</a></span>
</figcaption>
</figure>
<p>Compared with a pool, wild swimmers are more likely to become unwell from swimming in outdoor water as there will always be potentially <a href="https://evidence.nihr.ac.uk/alert/swimming-in-seawater-is-linked-with-an-increased-chance-of-some-illnesses/">disease-causing microbes present</a>. </p>
<p>Swimming pool water, with adequate chlorine disinfection levels and pH maintenance, is much less likely to contain infectious microorganisms and so represents a much safer environment for recreational swimming. Injuries and drowning are also much less likely in pools where trained <a href="https://www.lifeguardtv.com/why-you-should-swim-near-a-lifeguard/">lifeguards</a> and safety equipment are present.</p>
<p>Perhaps, then, an outdoor managed swimming pool offers the best of both worlds – a swim with the sun on your back in a sanitary environment.</p><img src="https://counter.theconversation.com/content/199166/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Primrose Freestone does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
As well as the joy that comes with swimming, there can also be some dirty risks.
Primrose Freestone, Senior Lecturer in Clinical Microbiology, University of Leicester
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/176466
2022-05-16T19:59:36Z
2022-05-16T19:59:36Z
Class, queerness and illness in the ‘post-crisis’ era: rewriting the narrative of HIV
<figure><img src="https://images.theconversation.com/files/462919/original/file-20220513-15-56onz3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Jonathan Bazzi photo by Claudia Beretta</span> <span class="attribution"><span class="license">Author provided</span></span></figcaption></figure><p>I often read a book’s acknowledgments to see who an author thanks for supporting the creation of their work and how they go about thanking them.</p>
<p>Among those mentioned at the end of Jonathan Bazzi’s <a href="https://theconversation.com/the-end-of-eddy-and-why-writing-about-life-can-be-a-dangerous-game-72211">autofiction</a> is the award-winning Italian novelist Viola Di Grado. Bazzi thanks Di Grado for “curbing my wild proliferations of thought”, though frankly it’s hard to fathom a version of this memoir that’s even more wild and proliferating. </p>
<hr>
<p><em>Review: Fever by Jonathan Bazzi (Scribe Publications)</em></p>
<hr>
<p>In <a href="https://scribepublications.com.au/books-authors/books/fever-9781922310903">Fever</a>, the 37-year-old Milanese author meditates on illness and <a href="https://theconversation.com/wellness-is-not-womens-friend-its-a-distraction-from-what-really-ails-us-177446">wellness</a>, sex and death, families and their undoing, <a href="https://theconversation.com/love-violence-and-class-wounds-in-thatcher-era-glasgow-what-booker-winner-douglas-stuart-did-next-179095">class</a> and Italianness, mothers and sons, desire, art, education and more. When they land in a psychiatrist’s office, Bazzi is “a river that’s overflowing. I can’t stop.” Their account of growing up poor and queer in Northern Italy and of coming to terms with HIV in the era of undetectable viral counts is a veritable explosion of ideas. </p>
<h2>The story of an illness</h2>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/462917/original/file-20220513-110-mha5ii.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/462917/original/file-20220513-110-mha5ii.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/462917/original/file-20220513-110-mha5ii.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=933&fit=crop&dpr=1 600w, https://images.theconversation.com/files/462917/original/file-20220513-110-mha5ii.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=933&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/462917/original/file-20220513-110-mha5ii.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=933&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/462917/original/file-20220513-110-mha5ii.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1172&fit=crop&dpr=1 754w, https://images.theconversation.com/files/462917/original/file-20220513-110-mha5ii.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1172&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/462917/original/file-20220513-110-mha5ii.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1172&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<p>“Three years ago the fever came over me and never left … One week, two weeks.” Midway through the first page, we’re already months into the story of an illness, plunged into a life of anxious visits to clinics and puzzling test results.
Jonathan, 31. Boyfriend called Marius, two Devon Rex cats, casual job as a yoga instructor. Then, suddenly, a fever that will not subside.</p>
<p>Bazzi’s spare, efficient prose feels urgent, as if narrated by a frank and fast talker who gets intermittently bored. They wrap up one story, only to pick up the thread of another. This pace belies the hours, weeks and months of a life spent in waiting rooms and in bed, languishing in the chronic uncertainty of not knowing what’s wrong. </p>
<p>It also recalls the political urgency of earlier AIDS diaries and <a href="https://theconversation.com/holding-the-man-and-bringing-hiv-aids-in-australia-to-a-mainstream-audience-43250">memoirs</a> from the “plague years”. Although Bazzi will soon understand that they are HIV positive, and that there is a clear – and highly effective – treatment trajectory proceeding from that diagnosis, the body conceals other unsolved mysteries, and so the sense of urgency and uncertainty remains. </p>
<p>Alternating with these breathless chapters of autopathography (a patient’s account of illness) are episodes from Jonathan’s childhood and adolescence in the working-class city of Rozzano. Rozzano is on the “extreme Southern periphery of Milan”, and is peripheral in other ways, too. Women wear nightgowns to the supermarket and kids with fake tans whip past on Vespas. A bit “like the Bronx of Northern Italy”, Rozanno is a place into which “poverty and disadvantage are pumped […] like wastewater.” </p>
<p>The Rozanno effect infuses every facet of Jonathan’s life. Their parents, Tina and Roberto, had a “Rozzano love story” – that is, a relationship that didn’t last long, “a love that quickly soured into hate and spite”. </p>
<p>When teenage Jonathan starts meeting friends and lovers outside the city, they always ask to be dropped off several blocks from home. They don’t want anyone to see the “crumbling plaster façade” or the “appalling inhabitants leering from the balconies” of the public-housing tower in which they live. These “big, drab” towers that dominate the city have basements full of rats where drug users go to shoot up.</p>
<p>It’s a place “full of weirdos”, but not one that celebrates or nurtures them. Gender roles are rigidly policed; “men are made a certain way – they like Vespas, football, pussy – and women are made a different way”. </p>
<p>Jonathan prefers reading and drawing; at school he’s bullied relentlessly. “Rozzano hates me. I have hated Rozanno. Why was I born here?” Developing a stutter and a passionate interest in art doesn’t help, and he eventually drops out.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-beautiful-hiv-positive-community-queer-eyes-jonathan-van-ness-shines-a-spotlight-on-the-changing-face-of-hiv-123993">'The beautiful HIV-positive community': Queer Eye's Jonathan Van Ness shines a spotlight on the changing face of HIV</a>
</strong>
</em>
</p>
<hr>
<h2>The social construction of disease</h2>
<p>“Nothing could be more meaningless than a virus”, wrote Judith Williamson about HIV/AIDS in 1989. “It has no point, no purpose, no plan; it is part of no scheme, carries no inherent significance.” And yet every disease, especially if it is new, mysterious and potentially life-threatening, offers opportunities for storytelling and interpretation. </p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/462923/original/file-20220513-20-unr546.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Grey-haired woman in front of bookselves, wearing a waistcoat over a striped shirt." src="https://images.theconversation.com/files/462923/original/file-20220513-20-unr546.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/462923/original/file-20220513-20-unr546.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=575&fit=crop&dpr=1 600w, https://images.theconversation.com/files/462923/original/file-20220513-20-unr546.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=575&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/462923/original/file-20220513-20-unr546.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=575&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/462923/original/file-20220513-20-unr546.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=723&fit=crop&dpr=1 754w, https://images.theconversation.com/files/462923/original/file-20220513-20-unr546.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=723&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/462923/original/file-20220513-20-unr546.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=723&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Susan Sontag photographed in her home, 1979 ©Lynn Gilbert.</span>
<span class="attribution"><span class="source">Wikimedia Commons</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Reflecting on their diagnosis, Bazzi parses the social meanings of HIV: “HIV confirms two things: you’re gay, and you’ve had sex. Maybe too much sex, and in a promiscuous manner.” Another story: HIV is part of a family curse. “Bazzi men are unlucky; they always die young”. </p>
<p>Recalling Susan Sontag’s two famous essays on disease, <a href="https://www.nybooks.com/articles/1978/01/26/illness-as-metaphor/">Illness as Metaphor</a> (1978) and <a href="https://www.nybooks.com/articles/1988/10/27/aids-and-its-metaphors/">AIDS and its Metaphors</a> (1988), Bazzi contrasts the metaphors used to understand <a href="https://theconversation.com/goodbye-georgia-blain-a-brave-and-true-chronicler-of-life-70329">cancer</a>, which his father has, and HIV.</p>
<blockquote>
<p>Cancer is a crazed proliferation of cells. HIV is cell death. Cancer is internal revolt, the body wanting too much, growing, expanding. HIV is an attack, an invasion, a capitulation. </p>
</blockquote>
<p>The various stories Bazzi tests out reflect the abundance of social meanings produced in response to disease. </p>
<p>Much like <a href="https://theconversation.com/australia-risks-relying-on-pfizer-and-moderna-for-its-covid-vaccines-3-ways-to-break-free-182147">COVID-19</a>, HIV has never been a simple collection of virological or biomedical facts. HIV/AIDS was the first global pandemic of the media age and since it first came to public attention in 1981, it has been extremely fertile territory for a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4265931/">wild proliferation</a> of stories. </p>
<p>AIDS as a Communist plot to bring down the United States; AIDS as a virus developed in CIA laboratories to kill homosexuals. While compulsively researching online, Bazzi discovers that many of these outlandish ideas continue to circulate: </p>
<blockquote>
<p>HIV is a hoax […] The biggest conspiracy of the twentieth century […] HIV and AIDS were invented by Big Pharma.</p>
</blockquote>
<p>The stories we tell about disease, including the supposedly neutral language used by doctors, scientists and public health professionals, give structure and meaning to our understanding of it. </p>
<p>In the case of HIV, the proliferation of stories has been of particular interest to researchers, activists, people living with HIV and many others. Because the way these stories are told – particularly in the public sphere – can influence the way <a href="https://theconversation.com/from-plagues-to-obesity-how-epidemics-have-evolved-96109">epidemics</a> play out, including who does and doesn’t receive appropriate care.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/462937/original/file-20220513-15-y0ozfu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/462937/original/file-20220513-15-y0ozfu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/462937/original/file-20220513-15-y0ozfu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=286&fit=crop&dpr=1 600w, https://images.theconversation.com/files/462937/original/file-20220513-15-y0ozfu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=286&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/462937/original/file-20220513-15-y0ozfu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=286&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/462937/original/file-20220513-15-y0ozfu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=360&fit=crop&dpr=1 754w, https://images.theconversation.com/files/462937/original/file-20220513-15-y0ozfu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=360&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/462937/original/file-20220513-15-y0ozfu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=360&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">One of a series of safe sex posters from an Italian ‘Stop AIDS’ campaign by the AIUTO AIDS Svizzero in collaboration with the Federal Office of Public Health.</span>
<span class="attribution"><span class="source">Wikimedia Commons</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<h2>Performing illness, from the dramatic to mundane</h2>
<p>“HIV has its own history, its own traditions”, Bazzi writes. </p>
<blockquote>
<p>Destinies, statistics, organisations, clinical cases, media stories. A long sequence of narratives that predate me, that I know very little about.</p>
</blockquote>
<p>Despite these claims to ignorance, Fever is particularly illuminating on the social experience of illness – the way a set of rituals and performances play out around the sick body, and how these operate to confer a set of social roles.</p>
<p>At the centre of the plot is the sick body, which provides evidence, clues that propel the narrative of illness along and so must be monitored and traced, described and surveilled. “I am preparing my bodily fluids for examination. My body is invested with new meaning.”</p>
<p>Doctors are the other core protagonists in this drama, and they possess a crucial storytelling role. They are “priest-like”, with the power to assign the sick person “to a community”, allocating them “a narrative, a case study”. And of course, the key setting for such performance is the hospital, “the place where either you’re reborn or you die”. </p>
<p>Despite its urgent pace, Fever is a reminder that the story of sickness isn’t all dramatic climaxes. <a href="https://theconversation.com/people-with-chronic-illness-short-changed-by-fragmented-system-federalism-paper-35393">Chronic illness</a> also involves very mundane and administrative tasks. Appointments, referrals, tests, prescriptions; the keeping and processing of medical records, payments, insurance paperwork. This is the everyday work of being unwell. Bazzi captures it in snatches of conversation overheard in waiting rooms. </p>
<blockquote>
<p>“Do you have a health insurance card? Excuse me, have you provided a urine sample?”
“That’ll be 27 euros and 80 cents.”</p>
</blockquote>
<p>Importantly, the dramaturgy of illness creates and re-creates interpersonal roles and relationships. For example, Jonathan’s partner Marius tests negative and this powerfully changes their relationship. </p>
<p>The couple are now <a href="https://www.verywellhealth.com/serodiscordant-couple-3132908">sero-discordant</a> (where one person is HIV-positive, the other HIV-negative): “An asymmetry is established.” Marius’s blood “has been interrogated, and it tells a different story”.</p>
<p>And what if, in spite of existing narratives and social roles, your own illness disregards the established parameters? For Jonathan, HIV is a “catalyst” and their body an “ampitheatre”, but there will be more to the story of their fever before it’s resolved – if indeed it ever can be.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/hiv-aids-on-screen-by-focusing-on-history-we-ignore-the-present-28972">HIV/AIDS on screen: by focusing on history, we ignore the present</a>
</strong>
</em>
</p>
<hr>
<h2>The HIV and AIDS memoir</h2>
<p>Fever is being hailed as one of the “first contemporary personal narratives of living with HIV”. In spite of the upwards of 37 million people in the world living with the infection, this is a fair description. </p>
<p>During the 1980s and 90s, a large body of HIV/AIDS diaries and memoirs were published. The most famous were written by white gay men living through extreme physical suffering and often social isolation in the early years of the AIDS crisis. </p>
<p>Among them are works by David Wojnarowicz and Paul Monette in the United States, and Derek Jarman in the United Kingdom. In Australia, there was the extraordinary AIDS diary <a href="https://www.dukeupress.edu/unbecoming">Unbecoming</a> (1990) by Griffith University anthropology lecturer Eric Michaels. Far better known is Timothy Conigrave’s <a href="https://www.penguin.com.au/books/holding-the-man-9781742284064">Holding the Man</a> (1995), which was adapted for the stage and eventually the screen.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/462918/original/file-20220513-110-gc9eud.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="An ill man, bald and in pyjamas, sits at breakfast with a healthier looking man." src="https://images.theconversation.com/files/462918/original/file-20220513-110-gc9eud.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/462918/original/file-20220513-110-gc9eud.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=249&fit=crop&dpr=1 600w, https://images.theconversation.com/files/462918/original/file-20220513-110-gc9eud.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=249&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/462918/original/file-20220513-110-gc9eud.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=249&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/462918/original/file-20220513-110-gc9eud.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=313&fit=crop&dpr=1 754w, https://images.theconversation.com/files/462918/original/file-20220513-110-gc9eud.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=313&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/462918/original/file-20220513-110-gc9eud.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=313&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Ryan Corr and Craig Stott in Holding the Man (2015).</span>
<span class="attribution"><span class="source">IMDB</span></span>
</figcaption>
</figure>
<p>HIV/AIDS was – and remains – a carrier of heavily political meanings and these works served a testimonial function. They offered the experience of an individual but also paid witness to experiences of political abandonment and the failure of state institutions to properly respond to HIV/AIDS. Such testimonies enabled the expression of grief and mourning, but also provided a foundation for activism and political action. </p>
<p>These works also developed new experiential and expressive languages for thinking about illness. In so doing, they helped to transform public understandings of HIV. Alongside incendiary activist campaigns and other forms of cultural production, they played an important role in changing phobic and discriminatory narratives about HIV.</p>
<p>Fever is an inheritor of this tradition, but it’s a story about HIV in the “post-crisis” era. </p>
<p>Today, HIV positive people on treatment have a negligible viral load and largely cannot transmit the virus. Treatments are so significantly advanced that they have fewer and fewer side effects; new developments promise drugs that only need to be taken once a month or every two months. And yet, older ideas about HIV cast a lingering shadow. As Bazzi writes, “people living with the condition are still subject to a toxic blend of invisibility and guilt”. </p>
<p>A <a href="https://theconversation.com/hiv-aids-on-screen-by-focusing-on-history-we-ignore-the-present-28972">lack of conversations and stories</a> addressing the contemporary experience of living with HIV may contribute to and exacerbate this stigma. </p>
<p>Bazzi is explicit in their refusal of this state of affairs, “rejecting the tradition of shame and discretion”. </p>
<p>Fever is indeed a landmark in this sense, because while the stories of the crisis era were prolific across genres and forms, very little media and literature has captured the experience of living with HIV now.</p>
<p>“My HIV diagnosis is an incontrovertible fact”, Bazzi concludes. </p>
<blockquote>
<p>I have HIV – all that means is I have to see my doctor a lot, and do lots of tests. Like millions of other people in the world, for all kinds of reasons. Everything else is extrinsic. Put there by you, by us.</p>
</blockquote><img src="https://counter.theconversation.com/content/176466/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dion Kagan 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>
One of the first contemporary personal narratives about living with HIV in the 21st century, Fever urgently interrogates the social meanings of HIV, and how they’ve evolved in the era of treatment.
Dion Kagan, Research Officer, La Trobe University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/179364
2022-04-06T12:23:59Z
2022-04-06T12:23:59Z
What is palliative care? How is it different from hospice?
<figure><img src="https://images.theconversation.com/files/455876/original/file-20220401-11-wi4118.jpg?ixlib=rb-1.1.0&rect=25%2C12%2C2092%2C1397&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Palliative care tries to support a patient's quality of life.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/doctor-comforting-patient-at-patients-home-royalty-free-image/1289186571?adppopup=true">Pekic/E+ via Getty Images</a></span></figcaption></figure><p>When most people hear the term palliative care, they look worried or confused. Introducing myself to patients and families as a <a href="https://www.gim-crhc.pitt.edu/people/yael-schenker-md-mas">palliative medicine physician</a>, I commonly hear things like, “Does this mean I am dying?” or “I am not ready for hospice.” </p>
<p>I respond by acknowledging these common fears, but emphasizing that palliative care and hospice care <a href="https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care">are two very different things</a>.</p>
<p><a href="https://www.medicare.gov/coverage/hospice-care">Hospice care</a> is a Medicare-covered benefit for people whose doctors believe they are in the last six months of life, and who want to stop treatments targeting their disease – such as chemotherapy for cancer – to focus on comfort. In contrast, <a href="https://getpalliativecare.org/">palliative care</a> is appropriate for people at any stage of serious illness and is provided alongside treatments aimed at curing disease.</p>
<p>Palliative care specialists like me are experts in <a href="https://www.hopkinsmedicine.org/health/wellness-and-prevention/palliative-care-methods-for-controlling-pain">treating physical symptoms</a> like pain and nausea. But just as important, we listen to patients’ stories and find out what is most important to them. We help make difficult treatment decisions and address <a href="https://getpalliativecare.org/depression-normal-seriously-ill/">the sadness and uncertainty</a> that often accompany serious illness. We walk alongside patients and their families at a time that can be frightening and overwhelming, offering comfort, information, guidance and <a href="https://doi.org/10.1001/jama.2021.14802">hope</a>.</p>
<p>Palliative care recognizes that <a href="https://doi.org/10.1001/jamahealthforum.2021.1099">ethical and compassionate care for serious illness</a> requires supporting the whole person in addition to fighting the disease.</p>
<h2>Mounting evidence</h2>
<p>The field of palliative care is still relatively new. In the early 1990s, research demonstrated substantial shortcomings in the quality of care for patients with serious illnesses. <a href="https://jamanetwork.com/journals/jama/article-abstract/391724">One 1995 study of nearly 5,000 people in the U.S.</a> found that half of patients who died in the hospital experienced moderate to severe pain in their last days of life. More than half of the time, doctors did not know when their patients preferred to avoid CPR at the end of life.</p>
<p>These types of findings helped inspire the field of palliative care over the course of the 1990s and early 2000s. <a href="https://resident360.nejm.org/content_items/history-of-palliative-care">It began</a> at a handful of hospitals as a specialty consult service working alongside primary teams – such as oncologists, cardiologists, surgeons and neurologists – to improve the experience of serious illness and ensure patients’ needs were met.</p>
<p>According to the <a href="https://reportcard.capc.org/">State-by-State Report Card on Access to Palliative Care</a>, which is compiled by researchers at <a href="https://www.capc.org/">the Center to Advance Palliative Care</a>, only 7% of U.S. hospitals had a specialty palliative care service in 2001. Today, 72% of hospitals with 50 or more beds have a palliative care service, and palliative care specialists are increasingly available in other settings as well, including outpatient clinics, nursing homes and home-based programs. For example, it is now possible to see an oncologist for cancer treatment or a cardiologist for heart failure, followed by an appointment with a palliative care specialist who treats related symptoms such as <a href="https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-fatigue/art-20047709#:%7E:text=You%20may%20experience%20fatigue%20if,mood%20%E2%80%94%20also%20may%20cause%20fatigue.">fatigue</a> and <a href="https://doi.org/10.1097/HRP.0000000000000162">depression</a>. </p>
<p>This growth is fueled in part by growing evidence of the benefits that palliative care provides for patients and families. <a href="https://www.palcare.pitt.edu/">Our research team at the University of Pittsburgh</a> led a <a href="https://jamanetwork.com/journals/jama/fullarticle/2585979">2016 review</a> of results from 43 randomized trials with nearly 13,000 patients – meaning that some patients received palliative treatment, and others did not. We found that palliative care was associated with significant improvements in patients’ quality of life and reductions in their physical symptoms one to three months afterward.</p>
<figure class="align-center ">
<img alt="A woman in a hospital bed, in a hospital gown, smiles and pets a fluffy dog as another woman looks on." src="https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.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">Palliative care involves discussing what matters most to a patient’s quality of life, such as being able to care for their pets.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/pet-therapy-dog-visiting-senior-female-patient-in-royalty-free-image/465505909?adppopup=true">monkeybusinessimages/iStock via Getty Images Plus</a></span>
</figcaption>
</figure>
<p>Importantly, palliative care <a href="https://jamanetwork.com/journals/jama/fullarticle/2585979">was not associated</a> with shortened survival, pushing back against a popular assumption that pursuing palliative care means “giving up” on fighting disease. In fact, one <a href="https://www.nejm.org/doi/full/10.1056/nejmoa1000678">influential study</a> found that patients with advanced lung cancer who receive specialty palliative care in addition to standard oncology care lived almost three months longer than patients who received standard oncology care only.</p>
<p>Palliative care is now recommended in many national guidelines as a critical component of high-quality care for serious illnesses. For example, in 2016 <a href="https://doi.org/10.1200/JCO.2016.70.1474">the American Society of Clinical Oncology recommended</a> that all patients with advanced cancer receive dedicated palliative care services early after diagnosis, while also receiving treatment to target the disease. Increasingly, palliative care is viewed as an essential part of ethical and compassionate medical care.</p>
<h2>Not the norm</h2>
<p>One might suspect that an evidence-based service recommended by national guidelines would be available to everyone with serious illness. When it comes to palliative care, however, this is not the case. </p>
<p>Nationally, palliative care teams are vastly <a href="https://jamanetwork.com/journals/jamaoncology/article-abstract/2627421">understaffed</a>. <a href="https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2019.00018">Workforce shortages</a> are projected to worsen in the future, as <a href="https://acl.gov/aging-and-disability-in-america/data-and-research/projected-future-growth-older-population#:%7E:text=Data%2C%20Research%20%26%20Issues,-%2D%20Left%20Nav%20%2D&text=In%202019%2C%20there%20were%2054.1,and%2094.7%20million%20by%202060.">the U.S. population ages</a> and therapeutic advances mean people can live longer with serious illness. Even now, with COVID-19 surges having caused <a href="https://ourworldindata.org/covid-hospitalizations#how-many-people-are-in-hospital-due-to-covid-19-at-a-given-time">as many as 154,000 new hospitalizations weekly</a> and made other patients sicker because of <a href="https://doi.org/10.1111/jgs.17722">pandemic-related delays in care</a>, palliative teams are stretched to the limit.</p>
<p>Whether you or a loved one has access to palliative care may also depend on where you live and where you receive your medical care. According to the <a href="https://reportcard.capc.org/">State-by-State Report Card</a>, a hospital in New Hampshire is three times more likely to have a palliative care service than a hospital in Mississippi. Another <a href="https://doi.org/https://doi.org/10.1377/hlthaff.2021.01115">recent analysis</a> found that a not-for-profit hospital is two times more likely to have a palliative care service than a for-profit hospital.</p>
<p>A <a href="https://pubmed.ncbi.nlm.nih.gov/30707230/">2019 study</a> found that palliative care consults were less frequent at hospitals that serve the largest proportions of Black and Hispanic patients. These <a href="https://doi.org/10.1089/jpm.2013.9468">structural inequities</a> risk worsening <a href="https://doi.org/10.18043/ncm.81.4.254">known disparities</a> in the care of serious illness.</p>
<h2>Educating doctors</h2>
<p>Patients and families can request palliative care, but palliative care specialists usually are brought in once the primary clinical team recommends it. Yet many physicians do not, either because they mistakenly <a href="https://doi.org/10.1200/JOP.2013.001130">equate palliative care with hospice</a> or do not recognize the value that palliative care can bring.</p>
<p>One approach to expanding palliative care access is to enhance palliative training and support for every clinician who cares for patients with serious illness – an approach sometimes called <a href="https://www.uptodate.com/contents/primary-palliative-care">“primary” palliative care</a>. Another approach is to leverage newer care-delivery models, <a href="https://theconversation.com/is-telehealth-as-good-as-in-person-care-a-telehealth-researcher-explains-how-to-get-the-most-out-of-remote-health-care-142230">such as telemedicine</a>, to <a href="https://www.capc.org/toolkits/telehealth-and-palliative-care/">expand the reach</a> of palliative care specialists. </p>
<p>These solutions would require <a href="https://hospicenews.com/2021/09/21/lawmakers-call-on-congress-to-advance-hospice-palliative-workforce-bill-to-expand-hospice-and-palliative-care-training/">changing medical reimbursement and training models</a> to make palliative care fundamental – for everyone.</p><img src="https://counter.theconversation.com/content/179364/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Yael Schenker's research has been funded by the National Institute of Health, the National Palliative Care Research Center, PCORI, the American Cancer Society, AV Davis Foundation, and the McElhattan Foundation. She is a reviewer for UpToDate. </span></em></p>
Palliative care, often misunderstood, is not synonymous with hospice care.
Yael Schenker, Professor of Medicine, University of Pittsburgh
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/164754
2021-08-16T12:08:30Z
2021-08-16T12:08:30Z
Deciphering the symptoms of long COVID-19 is slow and painstaking – for both sufferers and their physicians
<figure><img src="https://images.theconversation.com/files/415730/original/file-20210811-21-1xw5nik.jpg?ixlib=rb-1.1.0&rect=758%2C100%2C4801%2C3567&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People suffering from long-term effects of COVID-19 face uncertainty about the nature of their symptoms and how long they might last.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/portrait-of-senior-woman-with-face-mask-standing-royalty-free-image/1256056382?adppopup=true"> Halfpoint Images/Moment via Getty Images</a></span></figcaption></figure><p>My first patient that day was a woman in her early 40s, an avid marathon runner who had contracted COVID-19 in March 2020. Now, 13 months later, she noted that she still felt fatigued and short of breath. She also noticed her heart was racing whenever she walked around. She reported having daily headaches, numbness and tingling in her legs, and difficulty with memory, which had affected her work.</p>
<p>This woman was coming in to see me, a <a href="https://www.researchgate.net/scientific-contributions/Allison-Navis-2131988399">neurologist specializing in infectious diseases</a>, for symptoms that we physicians now all-too-commonly know as long, or long-haul, COVID-19.</p>
<p>While we have yet to determine a precise definition for long COVID-19, we typically consider it the persistence or development of new symptoms that last more than <a href="https://doi.org/DOI:%2010.1136/bmj.m3026">four weeks after COVID-19 recovery</a>. Long COVID-19 often involves a constellation of symptoms affecting many parts of the body, but the <a href="https://www.sciencedirect.com/science/article/abs/pii/S0025619621003566">most commonly reported</a> are fatigue, shortness of breath, chest pains, cognitive changes, headaches, sensory changes and pain. </p>
<p>A year and a half into the COVID-19 pandemic, it remains unclear how many people are affected by long COVID-19. Some data suggests <a href="https://doi.org/10.1038/s41591-021-01292-y">4.5% of people</a> infected with COVID-19, or about 1 in 22, will have symptoms beyond eight weeks post-COVID, while other studies point to <a href="https://doi.org/10.1186/s12879-021-06359-2">closer to 49%</a>. Some studies show that among people hospitalized for COVID-19, <a href="https://doi.org/10.1016/S0140-6736(20)32656-8">up to 63%</a> continued to have symptoms – specifically fatigue or muscle weakness – six months later.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Doctors treating elderly man during COVID-19 pandemic" src="https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.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">People hospitalized with COVID-19 have a far greater chance of developing long COVID-19.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/doctors-checking-patient-in-ward-during-covid-19-royalty-free-image/1296010649?adppopup=true">Morsa Images/DigitalVision via Getty Images</a></span>
</figcaption>
</figure>
<p>In April 2020, because of the overwhelming number of patients we had, I was pulled from my regular duties as a neurologist and asked to take care of patients on a COVID-19 unit in the hospital. It was my first experience seeing how sick people were and the extent of harm the virus could cause. Given the severity of illness, we were concerned that many people would need long-term care. </p>
<p>So my institution, Mount Sinai, decided to open one of the <a href="https://www.mountsinai.org/about/covid19/center-post-covid-care">first multidisciplinary centers for post-COVID care</a>. I was asked to be the lead clinical neurologist for the center. Since then, I have personally seen several hundred long COVID-19 patients and worked on research studies with the aim of untangling the complexities of <a href="https://doi.org/10.1056/NEJMp2109285">what is happening with the condition</a>.</p>
<h2>The puzzling nature of long COVID-19</h2>
<p>While data on long COVID-19 has <a href="https://doi.org/10.1038/s41591-021-01433-3">started to emerge</a>, less is known about the neurological symptoms. The most common neurological symptoms appear to be <a href="https://doi.org/10.1002/acn3.51350">cognitive changes</a>, including “brain fog” – such as sluggishness and lack of sharpness – as well as headaches, sensory changes, muscle or nerve pain and loss of smell. </p>
<p>We are also seeing many cases of “dysautonomia,” or impaired regulation of the nervous system that controls heart rate and blood pressure – the “fight or flight” part of the nervous system. This condition can lead to sensations of a racing heart and dizziness.</p>
<p>Part of the challenge in understanding long COVID-19 is that many of the symptoms, like fatigue and brain fog, can stem from a variety of conditions from hormonal or metabolic changes to sleep disruption or depression. Trying to determine a direct line between cause and effect in the general public, regardless of COVID-19 infection, often does not lead to clear answers. </p>
<p>Although many long COVID-19 sufferers tend to report the same general symptoms, it is likely that there are different underlying causes leading to these symptoms in different people. For example, <a href="https://doi.org/10.1515/jtim-2016-0016">post-intensive care syndrome</a> (PICS) can occur in anyone who has had a prolonged stay in the ICU, whether or not it was related to COVID-19. PICS is caused by prolonged immobility, mechanical ventilation and metabolic changes that occur during severe illness or infection. The symptoms of PICS often overlap with those of long COVID. </p>
<p>For other symptoms, such as joint or back pain, doctors might be able to pinpoint a cause, like arthritis or a pinched nerve. But the question remains whether that was present before the COVID-19 infection and the infection simply triggered a response that caused the pain to be unmasked, or whether these are new developments in a patient’s body.</p>
<p>What’s more, many diagnostic tests come back normal, or they show common and nonspecific changes. We are not observing widespread strokes, lesions or inflammatory changes on imaging. We may see small changes in blood vessels, known as <a href="https://doi.org/10.1111/j.1749-6632.2010.05758.x">microvascular ischemic changes</a>, but these are extremely common in anyone with high blood pressure, diabetes or even migraines. And tests of the nerves in the arms and legs may show damage in some cases – what we call neuropathy. But that is not always the case, and these can occur regardless of COVID-19 status. This makes it challenging to draw a direct link to COVID-19.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Screens displaying coronavirus and brain wave research" src="https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=316&fit=crop&dpr=1 600w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=316&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=316&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=398&fit=crop&dpr=1 754w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=398&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=398&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Brain imaging has so far yielded inconclusive evidence about what is causing long COVID-19.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/laboratory-equipment-coronavirus-and-brainwave-royalty-free-image/1295324817?adppopup=true">janiecbros/iStock via Getty Images Plus</a></span>
</figcaption>
</figure>
<h2>What we do know</h2>
<p>This doesn’t mean we are at a complete loss about what is happening. The constellation of symptoms resembles a <a href="https://www.healthline.com/health-news/fauci-warns-about-post-viral-syndrome-after-covid-19">post-viral syndrome</a>, which refers to prolonged symptoms after an infection. Sometimes the infection might be from a known source, <a href="http://dx.doi.org/10.1136/pgmj.64.753.559">such as Epstein-Barr virus (which causes mononucleosis)</a>, but often symptoms follow a general viral illness. </p>
<p>Many people suffering from those conditions will report experiencing some viral-type illness and afterward having persistent fatigue, brain fog and other symptoms that we now often see with sufferers of long COVID-19. The similarity in symptoms suggests that long COVID-19 may not be unique to COVID-19 but rather a general post-infectious process. </p>
<p>Long COVID-19 symptoms can also closely resemble those of <a href="https://www.cdc.gov/me-cfs/index.html">myalgic encephalomyelitis</a>, often known as chronic fatigue syndrome, or another poorly understood disease called <a href="https://doi.org/10.1161/CIRCULATIONAHA.112.144501">postural orthostatic tachycardia syndrome</a>. Both of these are associated with fatigue, dysautonomia and brain fog, among other symptoms. We researchers don’t yet understand what causes either condition. But medications for symptoms, pacing of exercise and physical therapy <a href="https://www.cdc.gov/me-cfs/treatment/index.html">can be helpful</a> for both myalgic encephalomyelitis and long COVID-19.</p>
<h2>Where do researchers go from here?</h2>
<p>I often tell my patients that normal test results don’t mean everything is normal. Our tests may not be sensitive enough, or we are looking at the wrong thing, or we need to develop new tests. <a href="https://doi.org/10.1002/acn3.51350">Neuropsychological evaluations</a> can provide formal information on cognitive functioning and may show changes in memory, attention, language or problem-solving. These results can be helpful in determining rehabilitation strategies for brain fog, but unfortunately, they are not designed to explain why these changes are occurring. </p>
<p>Imaging of the brain, with MRI or CT scans, has so far not provided much information on the underlying cause. It could be that they are not sensitive enough to pick up on small changes; if this is the case, different types of scans – such as functional MRIs – that are either able to get better pictures or look at metabolic changes in the brain might be helpful. However, these are not commonly available outside of research. </p>
<p>Other studies that might enlighten us about the underlying cause of symptoms include bloodwork that might show <a href="https://doi.org/10.1093/cid/ciab611">elevations in autoimmune markers</a> or <a href="https://doi.org/10.1007/s11910-021-01130-1">changes in hormones</a>. The immune system involves a balance of many factors, and impaired regulation of this system after an infection can cause inflammation; this, combined with hormonal or metabolic changes, could potentially lead to long COVID-19 symptoms. While these are not answers, they offer potential leads and further clues for researchers to explore.</p>
<p>To better understand long COVID-19, we need to have a clear picture of who is affected. While communities of color have often been <a href="https://doi.org/10.1001/jamanetworkopen.2020.21892">more severely affected</a> by COVID-19, they are also <a href="https://www.pbs.org/newshour/show/in-medical-research-racial-diversity-is-a-matter-of-life-or-death">likely to be</a> <a href="https://doi.org/DOI:%2010.3390/jcm9082442">underrepresented in studies</a>. </p>
<p>As a result, we researchers need to engage broadly across communities to ensure we fully understand who is affected by long COVID-19, as well as what risk factors might be at play in determining long-term outcomes. Research needs to also focus on gaining a better understanding of the less understood diseases like myalgic encephalomyelitis, as they seem to most resemble what we are seeing.</p>
<p>The ultimate goal in understanding long COVID-19 is to figure out how to prevent it from happening – and prevent as much suffering as we can. While I have seen people get better from long COVID-19, I have many patients who continue to suffer over a year later. It has also affected the health care workers whose goal is to help others heal, but are left with few answers to provide. Until research yields more answers on what could be causing long-COVID, we are left with trying to minimize symptoms and waiting.</p><img src="https://counter.theconversation.com/content/164754/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Allison Navis receives funding from the NIH Loan Repayment Program</span></em></p>
Researchers are piecing together clues to better understand the puzzling array of symptoms in those who never seem to fully recover from COVID-19.
Allison Navis, Assistant Professor of Neurology, Icahn School of Medicine at Mount Sinai
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/161994
2021-06-14T17:59:34Z
2021-06-14T17:59:34Z
Why is access to medically assisted death a legislated right, but access to palliative care isn’t?
<figure><img src="https://images.theconversation.com/files/405982/original/file-20210611-17-yjynd9.jpg?ixlib=rb-1.1.0&rect=739%2C8%2C4564%2C3101&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Getting a referral to palliative care can be a complicated process.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>John started his first appointment in the Neuropalliative Care Clinic with, “I want to talk about MAID.” In our clinic, his request for medical assistance in dying is common. As legislated by government, I referred him to the MAID navigator. I had one request: that John wait to make his MAID decision until after seeing a community palliative care physician. </p>
<p>At his next appointment, John informed us he had withdrawn his MAID request because his primary symptom —pain — was now well controlled after our suggestions and those of the community palliative care doctor. John lived for two more years, during which he became closer with his daughter and continued to enjoy the company of his siblings.</p>
<p>John is not unusual. Neurologic illness accounts for 18 per cent of deaths in the Canada but <a href="https://doi.org/10.1016/j.parkreldis.2020.06.011">rarely has palliative care involvement</a>. By contrast, <a href="https://doi.org/10.25318/1310039401-eng">cancer accounts for 20 to 30 per cent of deaths</a>, but typically receives <a href="https://doi.org/10.1177%2F0269216317727157">75 per cent of palliative care</a>. </p>
<p>Part of the challenge is that palliative care services are often hospital-based, but most people who could benefit get their care in the community. Similarly, patients have recently refused palliative care <a href="https://www.virtualhospice.ca/Assets/MAiD_Report_Final_October_15_2018_20181218165246.pdf">in the belief that is the same as MAID</a>. In 2017, <a href="https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-april-2019.html">MAID accounted for 1.07 per cent</a> of deaths in Canada, increasing to <a href="https://www.canada.ca/en/health-canada/services/medical-assistance-dying-annual-report-2019.html">two per cent in 2019</a>.</p>
<p>In June 2016, the <a href="https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html#a1">passed legislation that gave all eligible Canadians the right to request MAID</a>. Colleges of Physicians and Surgeons required physicians to refer people who request MAID to services or arrange for a physician who would make the referral. </p>
<figure class="align-center ">
<img alt="A male doctor consulting with an older female patient" src="https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.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">The workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Since then, every province and territory devoted resources to navigate requests and assessments for MAID. Typically, provinces have a <a href="https://www.albertahealthservices.ca/info/Page13497.aspx">website for self-referral</a>, easily found by internet search and/or dedicated health-care staff to help navigate the MAID process or inform those who are MAID-curious. </p>
<h2>Complicated referrals</h2>
<p>By contrast, the referral process for palliative care is often convoluted. Many provincial web pages simply give a definition of palliative care (some confuse the issue by including the MAID navigation site) but do not provide a central access point for physicians or nurses. Referral forms (where available) are complex, which creates another barrier to access. Many palliative care programs have an unofficial prognosis of three to six months’ life expectancy for services, despite research demonstrating that early palliative care <a href="https://doi.org/10.1056/nejmoa1000678">improves outcomes and in fact, can prolong life</a>. </p>
<p>What is the disconnect? Health-care providers are an unexpected barrier as they often cling to the belief that palliative care is for the imminently dying or means to give up hope. <a href="https://doi.org/10.1177/0269216313502372">For the public, palliative care means dying soon</a>.</p>
<p>But <a href="https://www.who.int/news-room/fact-sheets/detail/palliative-care">modern palliative care</a> is about living well now, meeting patients’ goals and finding meaning in life. For John, we helped him set goals, focused on the positive in his life, like his better relationships with his children and ongoing closeness with his siblings. His sharp sense of humour emerged despite communication challenges.</p>
<p>Additionally, many palliative care programs exist in the oncology (cancer) department and thus, their focus is cancer-based. Twenty per cent of people die from cancer, but <a href="https://doi.org/10.1177%2F0269216313502372">receive 75 per cent of palliative care services</a>. Current training for palliative care physicians requires exposure to other patient populations like heart failure, kidney failure and neurologic illnesses, but health-care systems are slow to change. </p>
<figure class="align-center ">
<img alt="A man in a hospital bed and a woman holding his hand, listening to a doctor whose back is to the camera." src="https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.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">Placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult.</span>
<span class="attribution"><span class="source">(shutterstock)</span></span>
</figcaption>
</figure>
<p>And finally, the workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.</p>
<h2>Making palliative care more accessible</h2>
<p>The solution requires a multi-faceted approach. All health-care providers need to have general palliative care skills because, in the way we all learn to control blood pressure and read a basic electrocardiogram, palliative care is part of good medical care. </p>
<p>At a systems level, placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult for patients and clinicians. Given the broader applicability of palliative care, it is time for palliative care to become an independent department. Up to 28 per cent of Canadians will be seniors, which means <a href="https://www.canada.ca/en/public-health/services/publications/diseases-conditions/aging-chronic-diseases-profile-canadian-seniors-executive-summary.html">more people with multiple, chronic conditions that could benefit from a palliative approach</a>.</p>
<p>Building the palliative care workforce is essential. The palliative care workforce in Canada is <a href="https://surveys.cma.ca/en/viewer?file=%2fdocuments%2fSurveyPDF%2fCMA_Survey_Workforce2017_Q6i_FPfocus-e.pdf#phrase=false">estimated to be 773 doctors for a population of 39 million</a>. Once the palliative care workforce is established, educating the public that palliative care includes a holistic approach to wellness and meaning in life can help re-frame and increase acceptance.</p>
<p>There are more people like John who should connect with a palliative care team before walking down the road to MAID. Let palliative care help you live well, now.</p><img src="https://counter.theconversation.com/content/161994/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Janis M. Miyasaki receives funding from Patient Centered Outcomes Research Institute, US; NINDS. Vice President of the American Academy of Neurology; Board Member, International Neuropalliative Care Society. </span></em></p>
Palliative care is about living well and meeting patients’ goals, but referral can be more complex than access to medical assistance in dying (MAID). Palliative care should be as accessible as MAID.
Janis M. Miyasaki, Professor, Department of Medicine, University of Alberta
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/151168
2020-12-04T13:28:41Z
2020-12-04T13:28:41Z
This DIY contact tracing app helps people exposed to COVID-19 remember who they met
<figure><img src="https://images.theconversation.com/files/372928/original/file-20201203-13-12sn39w.jpg?ixlib=rb-1.1.0&rect=0%2C470%2C4127%2C2840&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Designed by psychologists, the free and anonymous web-based app can help you remember who you came in contact with.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/people-in-medical-face-masks-royalty-free-illustration/1211719449">Ani Ka via Getty Images</a></span></figcaption></figure><p>Imagine you begin to feel ill on Thursday, a few days after returning from a trip. You’re afraid it’s COVID-19, so you get tested on Friday. Even under good circumstances, it will probably be at least Monday before a contact tracer calls from the health department. And then some phone tag may ensue before you speak with anyone – if you <a href="https://www.politico.com/news/2020/11/26/biden-plan-contact-tracing-440784">get a call at all</a>.</p>
<p>Once a contact tracer does reach you, you will be asked to remember all the people you were in close contact with, starting two days before you began feeling symptoms. That means recalling all the places you went and the people you saw over the past week. </p>
<p>It isn’t easy. As time passes, memories fade. Unfortunately, your contacts, unaware they were exposed to the coronavirus, may have already infected others.</p>
<p>Concerned about those delays, three of us and our colleague <a href="https://doi.org/10.1007/BF02806548">Ronald Fisher</a>, all <a href="https://scholar.google.com/citations?user=wR9V8s8AAAAJ&hl=en">psychology</a> <a href="https://scholar.google.com/citations?user=STmVsAgAAAAJ&hl=en">professors</a> with <a href="https://scholar.google.com/citations?user=jXLWoU4AAAAJ&hl=en">expertise in memory</a>, developed a way for people who have been exposed to COVID-19 to effectively trace their recent contacts on their own. </p>
<p>Self-driven contact tracing shouldn’t replace health department efforts. Professional teams of trained contact tracers are critical for locating the people you came in contact with but don’t know, such as at a restaurant or on an airplane, and then tracing the next ring of contacts. However, jump-starting the effort on your own can improve your chances of remembering and allow you to warn your contacts sooner.</p>
<p><iframe id="q6J6O" class="tc-infographic-datawrapper" src="https://datawrapper.dwcdn.net/q6J6O/6/" height="400px" width="100%" style="border: none" frameborder="0"></iframe></p>
<h2>Notifying contacts faster</h2>
<p>Contact tracing, along with testing and isolating people who are infected, is considered crucial for controlling the coronavirus’s spread until a vaccine becomes widely available.</p>
<p>Health department contact tracers try to notify and interview anyone who was within <a href="https://www.cdc.gov/coronavirus/2019-ncov/php/contact-tracing/contact-tracing-plan/contact-tracing.html">6 feet of an infected person for a total of 15 minutes or more</a>. Studies show that, to be effective, that notification needs to happen <a href="https://doi.org/10.1016/S2468-2667(20)30157-2">within a few days</a> of the person’s symptoms appearing. But case numbers have gotten so high, it’s become impossible for many states and counties to keep up. Some, including in <a href="https://www.adn.com/alaska-news/2020/11/23/state-urges-covid-positive-alaskans-to-personally-notify-close-contacts-as-surge-strains-public-health-staffing/">Alaska</a>, <a href="https://www.kmov.com/news/patients-tasked-with-doing-their-own-contact-tracing-as-surge-in-cases-overwhelm-health-departments/article_e445266a-22d1-11eb-a89c-33c5cc02c740.html">Missouri</a> and <a href="https://www.dhs.wisconsin.gov/publications/p02803.pdf">Wisconsin</a>, have urged residents to start notifying contacts on their own.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/372876/original/file-20201203-21-123ialg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/372876/original/file-20201203-21-123ialg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/372876/original/file-20201203-21-123ialg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/372876/original/file-20201203-21-123ialg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/372876/original/file-20201203-21-123ialg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/372876/original/file-20201203-21-123ialg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/372876/original/file-20201203-21-123ialg.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">The time spent waiting in line for COVID-19 testing could be used to start your own contact tracing.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/VirusOutbreakFlorida/595bf9abf12f4688813eba5c811e0f44/photo">AP Photo/Marta Lavandier</a></span>
</figcaption>
</figure>
<p>We created <a href="https://cogtracer.wixsite.com/cogtracer">CogTracer</a> as a free online tool to help people start tracing those contacts using <a href="http://doi.org/10.1037%2Fa0020518">best-practice interviewing methods</a>.</p>
<p>With DIY contact tracing, the timetable changes. For example, while you’re waiting for your test, you can be given the link to the website and start walking yourself through a contact tracing interview.</p>
<p>[<em><a href="https://theconversation.com/us/newsletters/science-editors-picks-71/?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=science-corona-important">The Conversation’s most important coronavirus headlines, weekly in a new science newsletter</a>.</em>]</p>
<h2>How psychology can help jog your memory</h2>
<p><a href="https://cogtracer.wixsite.com/cogtracer">CogTracer</a> uses prompts, in words and photos, to spark your memory for as many contacts and locations visited as possible. It urges you to look back at places that might have evidence of your movements that week, such as social media posts and credit card records, and it provides scientifically supported interviewing techniques to reduce the chances of forgetting a contact. Research in investigative interviewing shows that people can <a href="https://doi.org/10.1002/acp.3753">effectively remember events on their own</a> when they have scientifically supported methods.</p>
<p>One technique for remembering is known as <a href="https://doi.org/10.3758/BF03196157">context reinstatement</a>. It involves putting yourself back in a specific time and place. </p>
<p>For example, if you attended a family gathering over the holidays, you might mentally recreate the event. You could think back on how you arrived and departed, what you wore, who was there, what you ate, what you heard and what you saw. The technique encourages closing your eyes during this process to help you concentrate. </p>
<p>“Reliving” this experience should make it easier to remember your close contacts at the event. </p>
<figure class="align-center ">
<img alt="Contact tracers at work in Harris County, Texas" src="https://images.theconversation.com/files/372879/original/file-20201203-13-dszqj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/372879/original/file-20201203-13-dszqj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/372879/original/file-20201203-13-dszqj6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/372879/original/file-20201203-13-dszqj6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/372879/original/file-20201203-13-dszqj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/372879/original/file-20201203-13-dszqj6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/372879/original/file-20201203-13-dszqj6.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">Counties have hired more contact tracers trained to conduct interviews, but the rising case numbers and amount of time required for each case have overwhelmed them.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/VirusOutbreakTexas/3aae3a4921754845853c750868fa0768/photo">AP Photo/David J. Phillip</a></span>
</figcaption>
</figure>
<p>Another important way to improve memory is <a href="https://doi.org/10.1002/acp.1232">varied retrieval</a>. When you search your memory only once, or in the same way over and over, it is likely that something will be forgotten. What you recall depends on how you cue your memory. If you prompt your memory in different ways, you’ll recall different things. </p>
<p>CogTracer takes advantage of repeated and varied recall by including broad category cues, such as “people you interact with in homes” or words such as “babysitter,” that may trigger memories of nonroutine activities that may otherwise be forgotten. </p>
<p>Applying these proven methods should result in more complete recall of those who could be at risk for contracting COVID-19.</p>
<h2>Online tools can overcome other barriers, too</h2>
<p>This DIY approach can also help overcome other barriers to effective and timely contact tracing. </p>
<p>Because many people put a high premium on privacy, some are resistant to providing information to contact tracers. CogTracer is anonymous and private – you don’t enter any information, and you make your own lists. This provides a way for those who otherwise would not engage in the process to contribute to contact tracing efforts on their own terms. Additionally, non-English speakers may require an interpreter, further delaying the contact tracing process. Online interviews can more quickly bridge these language gaps.</p>
<p>As the pandemic rages, public health workers are engaged in Herculean efforts to fight this disease. By reimagining contact tracing and applying the science of memory, we can leverage the power of individuals to attack the problem from as many fronts as possible.</p><img src="https://counter.theconversation.com/content/151168/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jacqueline R. Evans receives funding from the National Science Foundation. </span></em></p><p class="fine-print"><em><span>Christian Meissner receives funding from the National Science Foundation.</span></em></p><p class="fine-print"><em><span>Deborah Goldfarb receives funding from the National Science Foundation.</span></em></p><p class="fine-print"><em><span>Ian Jason Lee 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>
With new US COVID-19 cases topping 200,000 a day, contact tracers are overwhelmed. Here’s how infected people can start tracing and notifying contacts themselves.
Jacqueline R. Evans, Associate Professor of Psychology, Florida International University
Christian Meissner, Professor of Psychology, Iowa State University
Deborah Goldfarb, Assistant Professor of Psychology, Florida International University
Ian Jason Lee, Doctoral Student, Florida International University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/143639
2020-09-02T10:55:45Z
2020-09-02T10:55:45Z
‘I don’t want my friends to know’ – young people on growing up with Crohn’s or colitis
<figure><img src="https://images.theconversation.com/files/355861/original/file-20200901-24-phdkyq.jpg?ixlib=rb-1.1.0&rect=59%2C51%2C5651%2C3750&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/depressed-pensive-bored-teen-hipster-girl-1736674304">insta_photos/shutterstock</a></span></figcaption></figure><p>Young people with chronic health conditions cope with all of the usual challenges of growing up – making friends, changing schools, adapting to new situations, developing a sense of self, and dealing with interpersonal conflict. But they also have to deal with the challenges of their illness.</p>
<p>Young people with <a href="https://www.youtube.com/watch?v=vuytsHjQvqc">inflammatory bowel disease</a> (IBD), a group of chronic conditions that includes Crohn’s disease and ulcerative colitis, have to deal with unpleasant symptoms, intrusive treatment and uncertainty. <a href="https://www.crohnsandcolitis.org.uk/about-crohns-and-colitis/what-are-the-symptoms">Typical symptoms</a> include diarrhoea, abdominal pain, weight loss, blood in their stools and fatigue. The disease can go into remission, but there is no cure and flare-ups can result in hospital stays and missing school or work. </p>
<p>Findings from <a href="https://www.crohnsandcolitis.org.uk/research/projects/being-me-with-ibd-young-people-and-social-interactions">our recent study</a> on mental health among young people with IBD show that when experiencing symptoms, some young people feel negatively about their friendships because they are embarrassed about their condition. And we found that this can lead to loneliness along with depression and anxiety. </p>
<h2>‘Hiding my condition’</h2>
<p>Many young people with IBD choose to conceal their diagnosis from friends and colleagues. <a href="https://www.hindawi.com/journals/ijcd/2020/1059025/">Our study</a> found this is often out of a desire to present themselves as “normal” along with wanting to keep health issues private for fear of being judged. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/young-people-suffering-chronic-pain-battle-isolation-and-stigma-as-they-struggle-to-forge-their-identities-108134">Young people suffering chronic pain battle isolation and stigma as they struggle to forge their identities</a>
</strong>
</em>
</p>
<hr>
<p>Being diagnosed with IBD can create an abrupt shift in a young person’s expected biography, derailing their plans and expectations of life. Challenges to our identity are difficult to manage at any age, but can be particularly hard for <a href="https://journals.sagepub.com/doi/pdf/10.1177/1359104518818868">young people</a> as they transition towards <a href="https://www.researchgate.net/publication/6576059_The_passage_to_adulthood_challenges_of_late_adolescence">adulthood</a>.</p>
<p>Some young people we talked to said they feared being stigmatised because of their condition – which has been shown to happen to <a href="https://link.springer.com/content/pdf/10.1007/s11739-019-02268-0.pdf">adults with IBD</a>. This can be a key concern for young people with IBD, particularly just after diagnosis and during major life transitions such as moving schools, going to university, or starting a job. </p>
<h2>To disclose or not</h2>
<p>In <a href="https://www.hindawi.com/journals/ijcd/2020/1059025/">our study</a>, all of the young people had told at least one friend something about their IBD. Mostly their decision to tell had been their choice. But, visible indicators of their condition, such as a <a href="https://www.crohnscolitisfoundation.org/diet-and-nutrition/nutritional-support-therapy">nasogastric tube</a>, meant several young people felt compelled to disclose. </p>
<p>For such long-term chronic conditions, disclosure is ongoing and young people must make decisions throughout their life about what to disclose (or not) as they meet new people and enter into new situations. And although the <a href="https://www.huffingtonpost.co.uk/entry/crohns-colitis_uk_5d6c3049e4b09bbc9ef0e9a6">social taboo</a> of talking about bowels is being challenged, there is still a strong sense that toilet habits are awkward to talk about. </p>
<figure class="align-center ">
<img alt="Group of girls posing for a selfie." src="https://images.theconversation.com/files/355863/original/file-20200901-24-1kb5vqq.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/355863/original/file-20200901-24-1kb5vqq.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/355863/original/file-20200901-24-1kb5vqq.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/355863/original/file-20200901-24-1kb5vqq.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/355863/original/file-20200901-24-1kb5vqq.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/355863/original/file-20200901-24-1kb5vqq.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/355863/original/file-20200901-24-1kb5vqq.jpeg?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">Many of the young people we spoke to said their friendships were important but they struggled with knowing how much to share.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/four-women-in-front-of-green-bushes-1037989/">pexels</a></span>
</figcaption>
</figure>
<p>Starting a conversation about IBD was described as “tricky” and young people had to judge who they could trust – typically close friends – and how much to share. They generally avoided going into “too much detail”, or “making a big a thing about it” but also wanted friends to know it isn’t “just an upset stomach” as one young woman explained: </p>
<blockquote>
<p>It’s hard to explain colitis, it’s the hardest thing in the world, still now after so many years. It’s not just an upset tummy, it’s the whole body and lots more complications and medication. </p>
</blockquote>
<p>Some young people told stories of negative reactions from friends arising from misconceptions about IBD. Some friends worried they could catch IBD. Others were scared by the word “disease” or did not want to be friends with someone who was “different to them”. Some young people’s friendships were severed. Yet many found their friends to be supportive and their friendship ties strengthened.</p>
<h2>What helps?</h2>
<p><a href="https://www.ittakesguts.org.uk/">By talking</a> about their <a href="https://www.instagram.com/p/CDeT3N7HKVp/?utm_source=ig_web_copy_link">experiences</a> and sharing images of previously hidden aspects of treatment – such as <a href="https://www.instagram.com/p/CCY0suIluM2/?utm_source=ig_web_copy_link">their stoma bag</a> – young people are breaking down taboos and reducing the sense of isolation that can come with having a chronic health condition. </p>
<p>But while challenging social stigma is essential, our study also shows how important it is for young people with IBD to look after their <a href="https://www.ampersandhealth.co.uk/myibdcare/">mental wellbeing</a> – and friendships can be a key part of this. This is why we’ve worked with young people to come up with the “<a href="https://sites.edgehill.ac.uk/cc/">telling my friends</a>” resources, that will hopefully help other young people with Crohn’s or colitis talk to their friends about their condition. </p>
<p>It’s also important to highlight that our findings show that despite the struggles young people with IBD experience, none of them wanted to be or felt defined by their condition. They have the same concerns, aspirations and desires as other young people, and ultimately just want to be seen as normal – whatever that might look like.</p><img src="https://counter.theconversation.com/content/143639/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Bernie Carter received funding, along with Pamela Qualter, from Crohn's and Colitis UK to undertake the research underpinning this article.</span></em></p><p class="fine-print"><em><span>Alison Rouncefield-Swales was employed as Research Fellow for the study through the funding provided by Crohn's and Colitis UK.</span></em></p><p class="fine-print"><em><span>Pamela Qualter received funding, along with Bernie Carter, from Crohn's and Colitis UK to undertake the research underpinning this article.</span></em></p>
Many young people with inflammatory bowel disease choose to conceal their diagnosis from friends and colleagues.
Bernie Carter, Professor of Children's Nursing, Edge Hill University
Alison Rouncefield-Swales, Research fellow, Edge Hill University
Pamela Qualter, Professor of Psychology for Education, University of Manchester
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/138254
2020-08-23T14:39:24Z
2020-08-23T14:39:24Z
‘How to live in a pandemic’ is the type of university class we need during COVID-19
<figure><img src="https://images.theconversation.com/files/354003/original/file-20200821-22-x70b3l.png?ixlib=rb-1.1.0&rect=0%2C0%2C10844%2C4188&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Health is a complex issue that requires an interdisciplinary approach to study and teach.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Currently, we are all bombarded with headlines on the latest research related to COVID-19. The COVID-19 pandemic has demonstrated that health is a deeply interdisciplinary issue, demanding expert responses from a cross-section of fields: <a href="https://theconversation.com/apocalyptic-fiction-helps-us-deal-with-the-anxiety-of-the-coronavirus-pandemic-133682">the arts</a>, <a href="https://theconversation.com/even-during-the-coronavirus-pandemic-the-role-of-public-health-workers-is-unrecognized-137144">public health</a>, <a href="https://theconversation.com/canadas-unequal-health-system-may-make-remote-indigenous-communities-more-vulnerable-to-the-coronavirus-134963">social work</a> and <a href="https://theconversation.com/what-will-happen-to-school-grades-during-the-coronavirus-pandemic-135632">K-12 education</a> among them.</p>
<p>As an interdisciplinary collective of academics trained in a range of fields from the arts to social science to clinical sciences, we have witnessed first-hand a crucial problem in how health is taught and communicated at the post-secondary level. What is often missed, but is critical to contextualizing scientific findings, are examinations of the assumptions and methods used to conduct health-related research.</p>
<p>This omission reflects a problem in Canadian colleges and universities, which generally deliver post-secondary curriculum using a single-discipline approach. A single-discipline approach to health education does not engage the full picture nor provides the groundwork for innovative, equitable solutions in the future. </p>
<p><div data-react-class="InstagramEmbed" data-react-props="{"url":"https://www.instagram.com/p/B_TgOwyjcWe","accessToken":"127105130696839|b4b75090c9688d81dfd245afe6052f20"}"></div></p>
<h2>Multidisciplinary approaches</h2>
<p>At the post-secondary level, for example, a microbiology course might focus on lab-based methods used to diagnose whether someone has developed antibodies to a disease like COVID-19, while a typical public health course might focus on the mechanics of <a href="https://www.publichealthontario.ca/en/diseases-and-conditions/infectious-diseases/respiratory-diseases/novel-coronavirus/contact-tracing-initiative">contact tracing</a>. </p>
<p>Deeper understandings of health require a co-operative investigation of the various frameworks, techniques and assumptions that guide research practices and how they are communicated. </p>
<p>Universities must fundamentally change their approach to teaching health-related knowledge. It is time to commit to what we call “radical interdisciplinarity”: a sustained inquiry into interactions between biography, arts, culture, history and societal organization that contributes to debates about political, social and economic determinants of health.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/race-based-health-data-urgently-needed-during-the-coronavirus-pandemic-136822">Race-based health data urgently needed during the coronavirus pandemic</a>
</strong>
</em>
</p>
<hr>
<h2>Complex issues, complex research</h2>
<p>From local to global health issues, traditional, single-discipline approaches are inadequate training for our future carers and health workers. Along with the specialized, deep knowledge that characterizes most undergraduate education, we need to train students studying health issues to respond to the interdisciplinarity of health itself. </p>
<p>The ongoing coronavirus pandemic can be used to illustrate this radically interdisciplinary approach; such an approach informs a new team-taught course, “How to live in a pandemic,” being offered at the <a href="https://www.utsc.utoronto.ca/ichs/">University of Toronto Scarborough’s department of health and society</a>.</p>
<p><a href="https://www.mcgill.ca/mqhrg/resources/what-difference-between-qualitative-and-quantitative-research">Quantitative approaches</a>, which focus on numeric data, are suited for research focused on the development of treatments using <a href="https://opentextbc.ca/researchmethods/chapter/experimental-design/">experimental designs</a>, particularly randomized controlled trials. Projecting the number of infections and deaths resulting from the virus is done by statistical models of infectious disease, using secondary data.</p>
<p><a href="https://ethics.gc.ca/eng/tcps2-eptc2_2018_chapter10-chapitre10.html">Qualitative approaches</a>, by contrast, are best suited for examining the experience of, for example, <a href="https://doi.org/10.1080/10428232.2011.599280">racialized women working as front-line service providers</a>. In this case, one-on-one in-depth interviews capture the meanings and interpretations of their circumstances, particularly in light of the <a href="https://doi.org/10.1080/13557858.2016.1180347">impact of systemic racism on health</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/migrant-workers-face-further-social-isolation-and-mental-health-challenges-during-coronavirus-pandemic-134324">Migrant workers face further social isolation and mental health challenges during coronavirus pandemic</a>
</strong>
</em>
</p>
<hr>
<p>Beyond qualitative and quantitative approaches, <a href="http://www.euro.who.int/en/publications/abstracts/what-is-the-evidence-on-the-role-of-the-arts-in-improving-health-and-well-being-a-scoping-review-2019">arts-based health research methods are gaining traction</a>. Creative arts — including music, theatre, writing and visual arts — have been increasingly integrated into more conventional forms of health research and education. </p>
<p>Canada’s <a href="https://www.utsc.utoronto.ca/labs/scope/">first undergraduate program in health humanities</a> was launched in 2017 at the University of Toronto Scarborough. Integrating these insights with arts-based methods can further illustrate the diverse expression of these issues in the creative lives of everyday people. </p>
<p><div data-react-class="InstagramEmbed" data-react-props="{"url":"https://www.instagram.com/p/CEBCoBNHWru","accessToken":"127105130696839|b4b75090c9688d81dfd245afe6052f20"}"></div></p>
<h2>Social distancing and health inequity</h2>
<p>One of the challenges of the current pandemic is addressing how COVID-19 is experienced differently by individuals and communities. Lessons from previous epidemics show that we are not created equal in terms of exposure to and consequences of disease: racialized, poor and sexual minorities are examples of communities that have suffered disproportionately. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/mental-health-impact-of-coronavirus-pandemic-hits-marginalized-groups-hardest-142127">Mental health impact of coronavirus pandemic hits marginalized groups hardest</a>
</strong>
</em>
</p>
<hr>
<p>It is crucial to disentangle the social, environmental and economic influences of the COVID-19 pandemic across different age, gender and class lines. For example, during the COVID-19 pandemic, social distancing, self-isolation and other practices aimed at controlling viral transmission may have a particular impact on the mental health of lesbian, gay, bisexual, transgender, queer, two-spirit and intersex (LGBTQTSI+) people. </p>
<p>Members of LGBTQTSI+ communities are <a href="https://doi.org/10.1080/17441692.2019.1682028">particularly vulnerable to the negative consequences of social isolation</a>. These contribute substantially to higher reports of mental illnesses <a href="https://doi.org/10.1080/01634372.2020.1777241">such as anxiety, depression, suicidal ideation and acts, self-harm and controlled substance dependence</a>.</p>
<p>Sociological and public health research indicates <a href="https://dx.doi.org/10.1016%2FS2215-0366(20)30300-X">LGBTQTSI+ people have less access</a> to socioeconomic resources, employment opportunities, health care and <a href="https://doi.org/10.1542/peds.2020-1306">other forms of social support that are available to their cisgender heterosexual peers</a>.</p>
<p>Better understanding the impact of responses to COVID-19 on the mental health of LGBTQTSI+ people can help ensure that all members of our society — regardless of sexual and gender identity — receive culturally appropriate and inclusive care.</p>
<h2>Living and learning in a pandemic</h2>
<p>As university-based health researchers and educators, our approach to the study of COVID-19 differs from conventional health education approaches. We lead with the principle that it is valuable, and in fact ethical, to commit to radical interdisciplinarity inside and outside the classroom.</p>
<p>A basic understanding of the research methods generating the body of pandemic scientific knowledge is essential to critically appraise the evidence, by recognizing the methodological strengths and limitations of any specific disciplinary approach. </p>
<p>Universities must find ways to model the multi-sectorial, interdisciplinary solidarity required to face the escalating complexity of 21st-century global health. The COVID-19 pandemic gives us a moment in time to overhaul health education — and perhaps to teach us all how to better prepare to live in the midst of this and future pandemics.</p><img src="https://counter.theconversation.com/content/138254/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Andrea Charise receives funding from the Social Sciences and Humanities Research Council of Canada (SSHRC). </span></em></p><p class="fine-print"><em><span>Nicholas D. Spence receives funding from the Canadian Institutes of Health Research (CIHR). </span></em></p><p class="fine-print"><em><span>Ghazal Fazli, Jessica Fields, and Laura Bisaillon do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
The pandemic has revealed the complexity of new and ongoing health crises. Post-secondary institutions need to respond to this complexity with an interdisciplinary approach to teaching health issues.
Andrea Charise, Associate Professor, Department of Health & Society, University of Toronto
Ghazal Fazli, Lecturer, Interdisciplinary Centre for Health and Society, University of Toronto
Jessica Fields, Professor and Chair, Health and Society, University of Toronto
Laura Bisaillon, Assistant Professor, Interdisciplinary Centre for Health and Society and the Social Justice Education Department, University of Toronto
Nicholas D. Spence, Assistant Professor, Sociology and Health and Society, University of Toronto
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/143587
2020-07-29T20:31:18Z
2020-07-29T20:31:18Z
Stella Immanuel’s theories about the relationship between demons, illness and sex have a long history
<figure><img src="https://images.theconversation.com/files/350249/original/file-20200729-23-1iidksf.jpg?ixlib=rb-1.1.0&rect=7%2C7%2C1009%2C799&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Matfre Ermengaud's 'Temptation by Lechery' from a 14th-century manuscript.</span> <span class="attribution"><a class="source" href="https://www.bl.uk/catalogues/illuminatedmanuscripts/ILLUMIN.ASP?Size=mid&IllID=47758">The British Library</a></span></figcaption></figure><p>President Donald Trump <a href="https://t.co/NCNiIZ5SYq">has a new favorite doctor</a>. </p>
<p>On July 27, the president and his son Donald Trump, Jr. <a href="https://www.thedailybeast.com/trump-pushes-fake-covid-cure-from-fringe-doctors-banned-by-facebook">tweeted a viral video featuring Dr. Stella Immanuel</a>, in which the Houston pediatrician rejected the effectiveness of wearing face masks for preventing the spread of COVID-19 and promoted hydroxychloroquine to treat the disease.</p>
<p>Journalists quickly dug into Immanuel’s background <a href="https://www.thedailybeast.com/stella-immanuel-trumps-new-covid-doctor-believes-in-alien-dna-demon-sperm-and-hydroxychloroquine">and found</a> that she’s also claimed that having sex with demons can cause illnesses like cysts and endometriosis.</p>
<p>These beliefs don’t come out of thin air, and she’s far from the only person who holds them.</p>
<p><a href="https://brandonwhawk.net/">As a scholar of biblical and apocryphal literature</a>, I’ve researched and taught how these beliefs have deep roots in early Jewish and Christian stories – one reason they continue to persist today. </p>
<h2>Hints of demons in the Bible</h2>
<p>As in many religions, demons in Judaism and Christianity are often evil supernatural beings that torment people.</p>
<p>Although it’s difficult to find a lot of clarity about demons in the Hebrew Bible, many later interpreters have understood demons to be the explanation for the “evil spirit” that haunts King Saul in <a href="https://www.biblegateway.com/passage/?search=1%20Samuel%2016%3A14-23&version=NRSV">the first book of Samuel</a>.</p>
<p>Another example appears in the book of <a href="http://ccat.sas.upenn.edu/nets/edition/19-tobit-nets.pdf">Tobit</a>. This work was composed between about 225 and 175 BCE and isn’t included in the Hebrew Bible or accepted by all Christians. But it is considered part of the Bible by religious groups like Roman Catholics, Orthodox Christians, Beta Israel and the Assyrian Church of the East.</p>
<p>Tobit includes a narrative about a young woman named Sarah. Although Sarah doesn’t suffer any physical affliction, <a href="https://www.britannica.com/topic/Asmodeus">Asmodeus</a>, the demon of lust, kills every man betrothed to her because of his desire for her.</p>
<p>The Christian gospels are full of stories linking demons and illness, with Jesus and several of his early followers casting out demons who afflict their victims. In one of the most prominent stories told in the <a href="https://www.biblegateway.com/passage/?search=Mark+5%3A1-20&version=NRSV">Gospel of Mark</a>, Jesus encounters a man possessed by a group of demons who call themselves “Legion” and sends them into a nearby herd of pigs who stampede off a cliff.</p>
<h2>Demon lore spreads far and wide</h2>
<p>Demons pervade <a href="https://www.britannica.com/topic/apocrypha">biblical apocrypha</a>, which are stories about biblical subjects that were never included in the canonical Bible and include various associations between demons, illness and sex. </p>
<p>The early Christian text “<a href="https://www.nasscal.com/e-clavis-christian-apocrypha/acts-of-thomas/">Acts of Thomas</a>” was likely composed in the third century and became hugely popular, as it was eventually translated into Greek, Arabic and Syriac. It tells the story of the apostle Thomas’ travels to India as an early Christian missionary. Along the way, he encounters a number of obstacles, including people who have been possessed by demons.</p>
<p>In the fifth act, a woman comes to him and pleads for help. She tells the apostle how, one day at the baths, she encountered an old man and talked to him out of pity. But when he propositioned her for sex, she refused and left. Later that night, the demon in the guise of an old man attacked her in her sleep and raped her. Although the woman attempted to escape the demon the next day, he continued to find her and rape her every night, tormenting the woman for five years. Thomas then exorcises the demon.</p>
<figure class="align-right ">
<img alt="Astaroth rides a winged beast and clutches a snake." src="https://images.theconversation.com/files/350253/original/file-20200729-17-y718kr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/350253/original/file-20200729-17-y718kr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=669&fit=crop&dpr=1 600w, https://images.theconversation.com/files/350253/original/file-20200729-17-y718kr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=669&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/350253/original/file-20200729-17-y718kr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=669&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/350253/original/file-20200729-17-y718kr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=840&fit=crop&dpr=1 754w, https://images.theconversation.com/files/350253/original/file-20200729-17-y718kr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=840&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/350253/original/file-20200729-17-y718kr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=840&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A 19th-century drawing of Astaroth.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:Astaroth.jpg">Louis Breton</a></span>
</figcaption>
</figure>
<p>Another demon story is found in the “<a href="https://www.newadvent.org/fathers/0825.htm">Martyrdom of Bartholomew</a>,” which probably dates back to the sixth century. Bartholomew also travels to India, where he finds that the inhabitants of a city worship an idol named Astaroth who has promised to heal all of their illnesses. But Astaroth is actually a demon who causes afflictions that he then pretends to cure in order to gain more followers. Bartholomew reveals the farce and performs several miracles to prove his own spiritual prowess. After forcing the demon to confess to his deceit, Bartholomew drives him into the wilderness.</p>
<p>Apocrypha like the “Acts of Thomas” and “Acts of Bartholomew” were popular in the medieval period, and even those who couldn’t read or write knew these stories. They also helped fuel the “<a href="https://www.google.com/books/edition/Demon_Lovers/uEeA9_ECt-QC?hl=en&gbpv=1&printsec=frontcover">witch craze</a>” of the 16th and 17th centuries, in which zealous Christian leaders persecuted and killed thousands of people – mainly women – for their beliefs, often concocting claims that they consorted with demons.</p>
<h2>Beliefs that persist today</h2>
<p>It’s clear that Immanuel has profited from her beliefs in the supernatural, <a href="https://www.washingtonpost.com/nation/2020/07/28/trump-coronavirus-misinformation-twitter/">especially in right-wing and religious circles</a>. She has over 9,000 followers on Facebook and over 94,000 on Twitter, with a dedicated platform as a pastor. In fact, <a href="https://www.facebook.com/drstella.gwp/about_details">she casts herself</a> as a prophet and destroyer of demons.</p>
<p>It isn’t difficult to find <a href="https://www.christianitytoday.com/ct/1969/may-9/layman-and-his-faith.html">other modern Christians</a> who connect demons, sex and health issues. The conservative Christian magazine Charisma published a story claiming that <a href="https://www.salon.com/2012/11/26/christian_group_says_demon_sex_makes_you_gay/">sex with demons causes homosexuality</a>. And researchers recently were able to show that <a href="https://doi.org/10.1007/s13644-020-00403-4">belief in supernatural evil</a> could predict negative attitudes toward abortion, homosexuality, premarital sex, extramarital sex and pornography. </p>
<p>[<em>Deep knowledge, daily.</em> <a href="https://theconversation.com/us/newsletters/the-daily-3?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=deepknowledge">Sign up for The Conversation’s newsletter</a>.]</p>
<p>Meanwhile, many evangelical Americans believe that <a href="https://www.washingtonpost.com/politics/2019/11/25/why-evangelicals-like-rick-perry-believe-that-trump-is-gods-chosen-one/">Trump is God’s chosen one</a>, who has been tasked with fighting actual demons. Trump’s personal minister, Paula White, is just one conservative figure <a href="https://foreignpolicy.com/2020/06/10/trump-evangelicals-charismatics-paula-white-demons/">known to espouse these views</a>.</p>
<p>If anything, the coronavirus pandemic has shown how many on the religious right <a href="https://theconversation.com/coronavirus-trump-and-religious-right-rely-on-faith-not-science-134508">continue to rely on faith over science</a>. <a href="https://doi.org/10.1111/jssr.12677">Studies have already emerged</a> showing how the tension between faith and science has influenced many conservative Christians to resist the use of masks and other public health responses to the pandemic.</p>
<p>With many conservative Christians sharing some of the same views about demons as Immanuel – and conservative Christians forming a core base of support for the president – Trump’s promotion of the doctor’s beliefs makes perfect sense. </p>
<p>He’s preaching to the choir.</p><img src="https://counter.theconversation.com/content/143587/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Brandon W. Hawk 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>
Stories featuring demons and sex date back to early Judaism and Christianity. They inspired the witch craze and continue to be believed by many conservative Christians in America.
Brandon W. Hawk, Associate Professor of English, Rhode Island College
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/136600
2020-04-27T12:09:31Z
2020-04-27T12:09:31Z
From pews to patients – churches have long served as hospitals, particularly in times of crisis
<figure><img src="https://images.theconversation.com/files/330433/original/file-20200424-163122-1m1826y.jpg?ixlib=rb-1.1.0&rect=8%2C17%2C5746%2C3813&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A volunteer sets up beds in what would have been a field hospital in the Cathedral Church of St. John the Divine, New York.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/volunteer-sets-up-beds-in-what-will-be-a-field-hospital-in-news-photo/1217652327?adppopup=true"> Spencer Platt/Getty Images</a></span></figcaption></figure><p>Churches are looking to open up their doors to groups beyond their usual congregants during the coronavirus crisis: doctors, nurses and patients.</p>
<p>The Cathedral of St. John the Divine, the seat of the Episcopal diocese of New York, and one of the largest churches in the world, started a process of <a href="https://www.nytimes.com/2020/04/06/nyregion/cathedral-st-john-the-divine-coronavirus-field-hospital.html">converting its premises</a> into an emergency field hospital, earlier this April. <a href="https://www.nytimes.com/2020/04/09/nyregion/st-john-the-divine-franklin-graham.html">The plans were later shelved</a> in response to shifting needs and amid reported concerns over the involvement of a group criticized as anti-LGBT, but not before tents had been set up for 400 beds inside the cathedral’s vast interior. </p>
<p>Meanwhile, in Homer, a small city in Alaska, a church’s pastor preached from the parking lot during a drive-in Easter service, while <a href="https://www.homernews.com/news/a-look-inside-the-hospitals-alternate-covid-19-care-site/">the interior of the church was being used as an alternate hospital site</a> to manage the overflow of COVID-19 patients. </p>
<p>The last time churches in the U.S. were turned into temporary hospitals was during the <a href="https://www.thenewstribune.com/news/local/article240849376.html">Spanish flu epidemic of 1918</a>. But there is a much longer history of churches serving as hospitals, particularly during times of crisis such as war or plague.</p>
<h2>The origins of hospitals</h2>
<p>The first Christian hospitals, or “<a href="https://www.oxfordhandbooks.com/view/10.1093/oxfordhb/9780195336931.001.0001/oxfordhb-9780195336931-e-21">xenodocheia</a>,” a Greek word denoting “houses for strangers,” cared for pilgrims, the poor and those with infirmities. Bishops founded these hospitals during the fourth and fifth centuries, particularly in the Byzantine Empire. During the early ninth century, Holy Roman Emperor Charlemagne, <a href="https://www.jstor.org/stable/2856463?seq=1">ordered</a> that every cathedral have an attached hospital, underscoring the bishop’s central role as protector and healer of his flock.</p>
<p>Monasteries were also key providers of medical care during this period. The influential <a href="https://www.osb.org/our-roots/the-rule/texts-and-translations-of-the-rule-of-saint-benedict/">Rule of St. Benedict</a>, written in the fifth century to provide directives for the daily communal living of monks, affirmed the Christian duty to care for the sick as if they were Christ. </p>
<p>Throughout the Middle Ages, infirmaries were spaces run by <a href="https://www.cambridge.org/core/books/sacred-heritage/spirit-mind-and-body-the-archaeology-of-monastic-healing/2BECA8DA7A515729B759DD5757EC1C0D/core-reader">monasteries</a> for the healing and convalescence of those who were ill. Monastic infirmaries not only treated monks, but also sick guests coming from outside a monastery’s walls. Monasteries were also centers of medical learning.</p>
<p>A <a href="https://www.cambridge.org/core/journals/antiquity/article/black-death-mass-grave-at-thornton-abbey-the-discovery-and-examination-of-a-fourteenthcentury-rural-catastrophe/E0CC072A347CD3E91116DFB5133505F5">recent archaeological excavation</a> of the monastery of Thornton, located in Lincolnshire, England, found that a hospital inside the monastery was caring for dozens of men, women and children afflicted with plague during the 14th-century Black Death. When they died within a short time span, they were placed in a mass burial outside the monastery due to the lack of time for individual burials, <a href="https://theconversation.com/mass-graves-for-coronavirus-victims-shouldnt-come-as-a-shock-its-how-the-poor-have-been-buried-for-centuries-136655">a prospect that was recently raised in New York City.</a></p>
<p>Likewise, convents were frequently built next to hospitals, or were even turned into hospitals, so that nuns could care for the sick. For certain <a href="https://www.cornellpress.cornell.edu/book/9781501713491/creating-cistercian-nuns/#bookTabs=1">medieval religious women</a>, palliative caregiving was a key feature of their spiritual identities. </p>
<p>Many of the <a href="https://books.google.com/books/about/Sainthood_in_the_Later_Middle_Ages.html?id=9iZjQgAACAAJ">saints</a> canonized by the Church during the late Middle Ages were lay women and men who had provided assistance for those stricken with plague, leprosy and other infirmities.</p>
<h2>Medieval surge</h2>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/329852/original/file-20200422-47799-utwypc.gif?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/329852/original/file-20200422-47799-utwypc.gif?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/329852/original/file-20200422-47799-utwypc.gif?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=386&fit=crop&dpr=1 600w, https://images.theconversation.com/files/329852/original/file-20200422-47799-utwypc.gif?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=386&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/329852/original/file-20200422-47799-utwypc.gif?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=386&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/329852/original/file-20200422-47799-utwypc.gif?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=485&fit=crop&dpr=1 754w, https://images.theconversation.com/files/329852/original/file-20200422-47799-utwypc.gif?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=485&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/329852/original/file-20200422-47799-utwypc.gif?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=485&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">A 16th-century woodcut of the Hospital of Paris, with nuns caring for the sick.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:Hotel_Dieu_in_Paris_about_1500.gif">https://www.mja.com.au/journal/2002/177/11/contagiousness-childbed-fever-short-history-puerperal-sepsis-and-its-treatment#i1067496</a></span>
</figcaption>
</figure>
<p>From A.D. 1050 to A.D. 1300, thousands of new hospitals were built across Europe, catering for those afflicted with leprosy, poverty and other illnesses. </p>
<p><a href="https://www.cornellpress.cornell.edu/book/9781501742101/the-medieval-economy-of-salvation/">As I show in my new book</a>, the emergence of this “hospital movement” was part of a broader charitable revolution that saw the creation of new institutions to care for medieval Europe’s sick, poor and vulnerable.</p>
<p>Founded in the 11th century to care for wounded pilgrims in Jerusalem, <a href="https://books.google.com/books/about/The_Knights_Hospitaller.html?id=oGppfVJMKjsC">the Order of St. John, or Knights Hospitaller</a>, quickly became militarized during the Crusades, regularly engaging in military combat. However, the order continued to maintain its large hospital in Jerusalem, and during the 12th and 13th centuries, it also set up a <a href="https://www.jstor.org/stable/2849782?seq=1">large network of hospitals both in the eastern Mediterranean and across Europe</a>.</p>
<p><a href="https://yalebooks.yale.edu/book/9780300109955/renaissance-hospital">Architecturally and in design</a>, many medieval hospitals looked like churches, and some can still be seen in places like <a href="https://www.taylorfrancis.com/books/e/9781315238333/chapters/10.4324/9781315238333-6">Tonnerre</a>, France, and <a href="https://books.google.com/books/about/Medicine_for_the_Soul.html?id=7vDaAAAAMAAJ">Norwich,</a>, England. The central ward of these hospitals resembled a nave, or the central, rectangular part of a church. </p>
<p>There was often a chapel at the east end of the central ward where patients were housed, thereby making it possible for the sick to participate in the Mass from their beds. </p>
<p>In late medieval and early modern Europe, <a href="https://www.routledge.com/Plague-Hospitals-Public-Health-for-the-City-in-Early-Modern-Venice-1st/Crawshaw/p/book/9780754669586">plague hospitals</a> were frequently staffed by physicians, priests, members of religious orders, and lay religious women and men. Like the workers on the front lines of treating COVID-19 today, these premodern health care workers faced great dangers. Priests working in plague hospitals used a special tool to administer the Eucharist so as not to get infected by patients. The priests heard confessions from a distance, enforced quarantines and created an area outside plague hospitals for disinfecting household goods and slaughtering household pets that belonged to plague victims. </p>
<p>Although the image of the interior of the Cathedral of St. John the Divine being set up as a hospital ward for treating COVID-19 may be jarring to some, it harks back to the many centuries when religious spaces were regularly used not only for prayer, preaching and religious ritual, but for caring for the sick, giving aid to the needy, and burying the dead. </p>
<p>[<em>Get facts about coronavirus and the latest research.</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=upper-coronavirus-facts">Sign up for The Conversation’s newsletter.</a>]</p><img src="https://counter.theconversation.com/content/136600/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Adam J. Davis received funding from the National Endowment for the Humanities in 2014-15. </span></em></p>
Images of religious buildings being used to treat the sick shouldn’t come as surprise. The practice has a long tradition, dating back to the Middle Ages.
Adam J. Davis, Professor of History , Denison University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/132951
2020-03-12T12:05:17Z
2020-03-12T12:05:17Z
Why a Roman philosopher’s views on the fear of death matter as coronavirus spreads
<figure><img src="https://images.theconversation.com/files/319925/original/file-20200311-116281-8nkx8t.jpg?ixlib=rb-1.1.0&rect=23%2C14%2C1946%2C1297&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Lucretius Carus.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/internetarchivebookimages/14749950326/">Internet Archive Book Images/Flickr</a></span></figcaption></figure><p>With the global spread of the new coronavirus, <a href="https://www.bbc.com/news/world-europe-51815911">fears about illness and death</a> weigh heavily on the minds of many. </p>
<p>Such fears can often result in a disregard for the welfare of others. All over the world, for example, essential items such as toilet paper and hand sanitizer <a href="https://www.bbc.com/news/business-51737030">have been sold out</a>, with many people stockpiling them. </p>
<p>A first-century B.C. Roman poet and philosopher, Lucretius was worried that our fear of death could lead to irrational beliefs and actions that could harm society. As a <a href="https://scholar.google.com/citations?user=AQ2izUYAAAAJ&hl=en">philosopher</a> who has just published a <a href="https://global.oup.com/academic/product/lucretius-ii-9781474466646?cc=us&lang=en&">book</a> on Lucretius’ ethical theory, I cannot help but notice how his predictions have come true. </p>
<h2>Lucretius and his beliefs</h2>
<p>Lucretius was a materialist who did not believe in gods or souls. He thought that all of nature was made of continually changing matter. </p>
<p>Since nothing in nature is static, everything eventually passes away. Death, for Lucretius, allowed for new life to emerge from the old. </p>
<p>When there is no immediate danger of dying, people are less afraid of death, Lucretius says in “<a href="https://www.hackettpublishing.com/philosophy/focus-philosophical-library/on-the-nature-of-things-englert-edition">The Nature of Things</a>.” But when illness or danger strike, people get scared and begin to think of what comes after death.</p>
<p>Some people might make themselves feel better by imagining that they have immaterial souls that shed their bodies or that there is a benevolent God, Lucretius writes. Others might imagine an eternal afterlife, as the philosopher <a href="https://scholar.google.com/citations?user=exPpPZsAAAAJ&hl=en">Todd May</a> argues in his 2014 book, “<a href="https://www.cambridge.org/core/books/death/C499ED5B30CF035E2727BAE54BAA4FD7">Death</a>.”</p>
<p>The fear of death may lead people to seek comfort in the idea that there is an immortal soul that is more important than the body and the material world. </p>
<h2>Fear and social divisions</h2>
<p>However, an ethical danger of such beliefs, Lucretius <a href="https://www.hackettpublishing.com/philosophy/focus-philosophical-library/on-the-nature-of-things-englert-edition">argues</a>, is that people may become preoccupied with something that literally does not matter at all. </p>
<p>This fear and anxiety, Lucretius says, stains everything in life. It “leaves no pleasure clear and pure” and it could even lead to “a great hatred of life.” Studies show that anxiety about death can lower one’s immune system and make it more <a href="https://doi.org/10.1016/0091-3057(95)02158-2">vulnerable</a> to infections.</p>
<p>Additionally, Lucretius says, the fear of death can also lead people to create social divisions. When people are afraid of dying, they might think that withdrawing from others will help keep danger, disease and death away. </p>
<p>“This is why people, attacked by false fears, desire to escape far away and to withdraw themselves,” Lucretius <a href="https://www.hackettpublishing.com/philosophy/focus-philosophical-library/on-the-nature-of-things-englert-edition">says</a>. </p>
<p>This phenomenon is well documented in terror management <a href="https://doi.org/10.1037/a0024033">studies</a>. The fear of death results in a desire to escape from disadvantaged groups. </p>
<p>In China, for example, rural migrant workers were <a href="https://www.nytimes.com/2020/02/23/business/economy/coronavirus-china-migrant-workers.html">blocked</a> from quarantined cities, kicked out of apartments and turned away by factory owners, as authorities tried to control the spread of the coronavirus. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/319926/original/file-20200311-116261-2jkgif.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/319926/original/file-20200311-116261-2jkgif.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/319926/original/file-20200311-116261-2jkgif.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/319926/original/file-20200311-116261-2jkgif.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/319926/original/file-20200311-116261-2jkgif.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/319926/original/file-20200311-116261-2jkgif.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/319926/original/file-20200311-116261-2jkgif.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/319926/original/file-20200311-116261-2jkgif.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">A sign on a grocery store in Kirkland, Washington, says all hand sanitizer products have been sold out.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Virus-Outbreak-Stockpiling/bebd32f5a6d14715ad2b111f865c4a11/3/0">AP Photo/Ted S. Warren, File</a></span>
</figcaption>
</figure>
<p>In the U.S., poorer workers <a href="https://www.nytimes.com/2020/03/01/upshot/coronavirus-sick-days-service-workers.html">do not have the luxury</a> to work from home when schools close, and cannot afford to take sick days or see a doctor. They are thus more <a href="https://www.washingtonpost.com/outlook/2020/03/02/coronavirus-could-hit-us-harder-than-other-wealthy-countries/">vulnerable</a> compared to those who can afford to isolate themselves.</p>
<p>Asian Americans are also experiencing <a href="https://www.vox.com/2020/2/7/21126758/coronavirus-xenophobia-racism-china-asians">increased discrimination</a> following the coronavirus spread. Fewer people are going to Chinese restaurants out of fear of being infected. Asian American schoolchildren too have been targets of racist comments. </p>
<h2>Focus on staying healthy</h2>
<p>The fear of death is irrational, according to Lucretius, because once people die they will not be sad, judged by gods or pity their family; they will not be anything at all. “Death is nothing to us,” <a href="https://www.hackettpublishing.com/philosophy/focus-philosophical-library/on-the-nature-of-things-englert-edition">he says</a>. </p>
<p>Not fearing death is easier said than done. That is why, for Lucretius, it is the most important ethical challenge of our life.</p>
<p>Instead of worrying about what may happen after death, Lucretius advises people to focus on keeping their bodies healthy and helping others do the same.</p>
<p>[<em><a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=expertise">Expertise in your inbox. Sign up for The Conversation’s newsletter and get a digest of academic takes on today’s news, every day.</a></em>]</p><img src="https://counter.theconversation.com/content/132951/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Thomas Nail 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>
A first-century B.C. Roman poet and philosopher, Lucretius was worried that our fear of death could lead to irrational beliefs and actions that could harm society.
Thomas Nail, Associate Professor of Philosophy, University of Denver
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/129742
2020-02-13T14:04:19Z
2020-02-13T14:04:19Z
How to convince your loved ones to get the flu shot this year
<figure><img src="https://images.theconversation.com/files/309773/original/file-20200113-103979-1txdvzu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Studies show that people are more likely to get the flu shot if they have a plan.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/concept-image-calendar-red-push-pin-273450770">xtock/Shutterstock.com</a></span></figcaption></figure><p>The best way to <a href="https://www.cdc.gov/flu/prevent/actions-prevent-flu.htm">protect against the flu is the flu vaccine</a>. But even so, <a href="http://thenationshealth.aphapublications.org/content/47/9/E45">about 60% of Americans will skip</a> getting a flu shot this year.</p>
<p>This can be especially frustrating when it is a friend or loved one who is putting themselves and those around them at risk. <a href="https://www.researchgate.net/scientific-contributions/2163348560_Helen_Colby">We are</a> <a href="https://clas.ucdenver.edu/hbsc/meng-li">behavioral scientists</a>, and we wanted to know: How do you convince someone to get the vaccine?</p>
<p>The flu shot doesn’t just benefit the person who gets it. It also <a href="https://www.pbs.org/wgbh/nova/article/herd-immunity/">helps protect everyone around the vaccinated person</a>, <a href="https://www.cdc.gov/flu/prevent/whoshouldvax.htm">such as the very young, the very old and people whose immune systems are compromised</a>. People in these groups often cannot get the vaccine, or it is less effective for them.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/m6b5z1CIEZE?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The CDC warns viewers to get the flu shot.</span></figcaption>
</figure>
<h2>It’s a bargain</h2>
<p>We would love to tell you that a logical presentation of facts like those we listed above is the best method for convincing someone. Unfortunately, <a href="https://www.cnbc.com/2018/11/02/heres-why-people-dont-get-a-flu-shot-and-why-you-should.html">it usually isn’t</a>.</p>
<p>It really seems like we should just be able to tell our spouse, uncle or babysitter how the vaccine works, what it does for us and why it’s important, and then, watch them run straight to the nearest immunization clinic.</p>
<p>The surprising truth is that telling people the facts about the flu shot just doesn’t work.</p>
<p>However, <a href="https://hub.kelley.iupui.edu/news/_news/kelley-professor-studying-what-works-and-what-doesnt-in-health-advertising-and-messaging.html">our research</a>, funded by the <a href="https://www.rwjf.org/en/library/funding-opportunities/2019/evidence-for-action-investigator-initiated-research-to-build-a-culture-of-health.html_">Robert Wood Johnson Evidence For Action program</a>, has found that showcasing the flu shot in different ways – like explaining <a href="https://www.cdc.gov/vaccines/programs/vfc/awardees/vaccine-management/price-list/index.html">what a good deal it is</a> – can be much more convincing.</p>
<p>For instance, even though the true cost of getting a flu shot is typically between US$40 and $70, most people can receive one free or for about $10 by using insurance, an employer’s program or finding a community clinic.</p>
<p>That’s a 75% to 100% savings. If televisions were offered at that discount, people would be lined up out the door of Best Buy. </p>
<p>These studies have shown that some of the consumer excitement people feel when getting great discounts on household goods can be transferred to preventive care activities, like flu shots.</p>
<p>Reminding people what a great deal flu shots are is a much more effective strategy to increase interest than listing the health and societal benefits. In our studies, it’s been even more effective than showing <a href="https://www.youtube.com/watch?v=m6b5z1CIEZE">a 30-second informational video</a> about flu shots from the CDC website.</p>
<h2>When and where?</h2>
<p>So now your friend or loved one is a little more interested, maybe even willing to get the shot. How do you make sure they will follow through?</p>
<p>If it’s your spouse or child, you might be able to make them an appointment.</p>
<p>In a separate set of studies, <a href="https://jamanetwork.com/journals/jama/fullarticle/186162?resultClick=1">we found</a> that signing up people for a specific date and time to get a flu shot – without asking them for convenient dates or knowing anything about their schedules – was 36% more effective at driving flu shot uptake than sending an email that asked people to click to make an appointment.</p>
<p>Even though some people changed their appointment date or time, and some didn’t show up, more people who received a randomly assigned appointment got the flu shot than those who had to make their own appointments.</p>
<p>If you can’t just make them an appointment, you can also nudge them to create what’s called an “<a href="https://www.psychologytoday.com/us/blog/dont-delay/201001/implementation-intentions-facilitate-action-control">implementation intention</a>,” or a concrete, specific set of plans about when and where something will happen.</p>
<p>Implementation intentions <a href="https://doi.org/10.1073/pnas.1103170108">increase the likelihood of getting</a> the flu shot by as much as 4.2%. For example, will they go to the pharmacy near their house for the vaccine? When will they do it?</p>
<p>Tying it to specific activities can help them remember – like “after dropping off the kids at soccer practice on Saturday morning I will stop by the CVS on the corner of Main Street to get a flu shot” – is a great implementation intention.</p>
<p>Help the person develop an implementation intention by asking simple questions or making suggestions about when and where they might be able to get the vaccine.</p>
<p>Encouraging them to write them down – or even better, set a reminder in their phone or calendar – can also be helpful.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/309774/original/file-20200113-103966-1p5lowt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/309774/original/file-20200113-103966-1p5lowt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=420&fit=crop&dpr=1 600w, https://images.theconversation.com/files/309774/original/file-20200113-103966-1p5lowt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=420&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/309774/original/file-20200113-103966-1p5lowt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=420&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/309774/original/file-20200113-103966-1p5lowt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=528&fit=crop&dpr=1 754w, https://images.theconversation.com/files/309774/original/file-20200113-103966-1p5lowt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=528&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/309774/original/file-20200113-103966-1p5lowt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=528&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Getting the flu shot helps people who are most susceptible to the flu, like kids.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-makes-vaccination-391419913">CNK02/Shutterstock.com</a></span>
</figcaption>
</figure>
<h2>The flu is no joke</h2>
<p>Though the optimal time to get a flu shot is much earlier <a href="https://www.cdc.gov/flu/about/season/flu-season.htm">during the flu season</a>, it is not too late to get the shot, as the season sometimes goes as late as May.</p>
<p>The <a href="https://www.scientificamerican.com/article/how-does-the-flu-actually-kill-people/">flu kills hundreds of thousands</a> of people every year around the world and <a href="https://www.waukeshapediatrics.com/blog/post/cold-vs-flu.html">debilitates millions more</a>. The best prevention is getting the flu vaccine.</p>
<p>But if presenting the facts to your friends and family isn’t encouraging them to get the shot, try emphasizing the great value, making appointments for them or encouraging them to set and record concrete implementation intentions.</p>
<p>They will protect their health and get a great bargain too.</p>
<p>[ <em>Like what you’ve read? Want more?</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=likethis">Sign up for The Conversation’s daily newsletter</a>. ]</p><img src="https://counter.theconversation.com/content/129742/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Helen Colby receives funding from the Robert Wood Johnson Foundation. </span></em></p><p class="fine-print"><em><span>Meng Li receives funding from the Robert Wood Johnson Foundation. </span></em></p>
The flu shot is a bargain – and people are more likely to get it if they know that.
Helen Colby, Assistant Professor of Marketing, IUPUI
Meng Li, Associate Professor of Health and Behavioral Sciences, University of Colorado Denver
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/128061
2020-02-05T19:02:20Z
2020-02-05T19:02:20Z
‘I want to stare death in the eye’: why dying inspires so many writers and artists
<figure><img src="https://images.theconversation.com/files/312728/original/file-20200130-41503-1sawtra.jpg?ixlib=rb-1.1.0&rect=11%2C2%2C1000%2C827&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/close-image-typewriter-paper-sheet-phrase-381699667">from www.shutterstock.com</a></span></figcaption></figure><p><em>This is one of our occasional <a href="https://theconversation.com/au/topics/essays-on-health-32828">Essays on Health</a>. It’s a long read.</em></p>
<hr>
<p>It may seem paradoxical, but dying can be a deeply creative process.</p>
<p>Public figures, authors, artists and journalists have long written about their experience of dying. But why do they do it and what do we gain?</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/on-poetry-and-pain-80273">On poetry and pain</a>
</strong>
</em>
</p>
<hr>
<p>Many stories of dying are written to bring an issue or disease to public attention.</p>
<p>For instance, English editor and journalist Ruth Picardie’s description of terminal breast cancer, so poignantly described in <a href="https://www.goodreads.com/en/book/show/424646.Before_I_Say_Goodbye">Before I say Goodbye</a>, drew attention to the impact of medical negligence, and particularly misdiagnosis, on patients and their families.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/312716/original/file-20200130-41481-6o52kl.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/312716/original/file-20200130-41481-6o52kl.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/312716/original/file-20200130-41481-6o52kl.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=892&fit=crop&dpr=1 600w, https://images.theconversation.com/files/312716/original/file-20200130-41481-6o52kl.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=892&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/312716/original/file-20200130-41481-6o52kl.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=892&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/312716/original/file-20200130-41481-6o52kl.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1121&fit=crop&dpr=1 754w, https://images.theconversation.com/files/312716/original/file-20200130-41481-6o52kl.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1121&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/312716/original/file-20200130-41481-6o52kl.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1121&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">English editor and journalist Ruth Picardie’s description of terminal breast cancer drew attention to the impact of medical negligence and misdiagnosis.</span>
<span class="attribution"><span class="source">Penguin Books</span></span>
</figcaption>
</figure>
<p>American tennis player and social activist Arthur Ashe wrote about his heart disease and subsequent diagnosis and death from AIDS in <a href="https://www.goodreads.com/book/show/698054.Days_of_Grace">Days of Grace: A Memoir</a>. </p>
<p>His autobiographical account brought public and political attention to the risks of blood transfusion (he acquired HIV from an infected blood transfusion following heart bypass surgery). </p>
<p>Other accounts of terminal illness lay bare how people navigate uncertainty and healthcare systems, as surgeon Paul Kalanithi did so beautifully in <a href="https://www.goodreads.com/book/show/25899336-when-breath-becomes-air">When Breath Becomes Air</a>, his account of dying from lung cancer.</p>
<p>But, perhaps most commonly, for artists, poets, writers, musicians and journalists, dying can provide <a href="https://www.goodreads.com/book/show/25733900-the-violet-hour">one last opportunity for creativity</a>.</p>
<p>American writer and illustrator Maurice Sendak drew people he loved as they were dying; founder of psychoanalysis Sigmund Freud, while in great pain, refused pain medication so he could be lucid enough to think clearly about his dying; and author Christopher Hitchens <a href="https://books.google.com.au/books/about/Hitch_22.html?id=H6nbV6nLcWcC&redir_esc=y">wrote about</a> dying from <a href="https://www.cancer.org.au/about-cancer/types-of-cancer/oesophageal-cancer.html">oesophageal cancer</a> despite increasing symptoms:</p>
<blockquote>
<p>I want to stare death in the eye. </p>
</blockquote>
<p>Faced with terminal cancer, renowned neurologist Oliver Sacks wrote, if possible, more prolifically than before.</p>
<p>And Australian author Clive James found dying a mine of new material:</p>
<blockquote>
<p>Few people read</p>
<p>Poetry any more but I still wish</p>
<p>To write its seedlings down, if only for the lull</p>
<p>Of gathering: no less a harvest season</p>
<p>For being the last time.</p>
</blockquote>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/vale-clive-james-a-marvellous-low-voice-whose-gracious-good-humour-let-others-shine-127992">Vale Clive James – a marvellous low voice whose gracious good humour let others shine</a>
</strong>
</em>
</p>
<hr>
<p>Research shows what dying artists have told us for centuries – creative self-expression is core to their sense of self. So, creativity has <a href="https://www.headspace.com/blog/2017/04/18/grief-creativity-together/">therapeutic and existential benefits</a> for the dying and their grieving families.</p>
<p>Creativity <a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/jocb.171">provides</a> a buffer against anxiety and negative emotions about death.</p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/312717/original/file-20200130-41554-1ntw9r6.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/312717/original/file-20200130-41554-1ntw9r6.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/312717/original/file-20200130-41554-1ntw9r6.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=708&fit=crop&dpr=1 600w, https://images.theconversation.com/files/312717/original/file-20200130-41554-1ntw9r6.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=708&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/312717/original/file-20200130-41554-1ntw9r6.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=708&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/312717/original/file-20200130-41554-1ntw9r6.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=890&fit=crop&dpr=1 754w, https://images.theconversation.com/files/312717/original/file-20200130-41554-1ntw9r6.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=890&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/312717/original/file-20200130-41554-1ntw9r6.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=890&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Cartoonist Miriam Engelberg chose a graphic novel to communicate her experience of cancer.</span>
<span class="attribution"><span class="source">Harper Perennial</span></span>
</figcaption>
</figure>
<p>It may help us make sense of events and experiences, tragedy and misfortune, as a graphic novel did for cartoonist Miriam Engelberg in <a href="https://www.harpercollins.com/9780060789732/cancer-made-me-a-shallower-person/">Cancer Made Me A Shallower Person</a>, and as <a href="https://books.google.com.au/books?hl=en&lr=&id=MkcGiLeATe8C&oi=fnd&pg=PP2&dq=%5BCarla+Sofka+and+Illene+Cupit+(eds)++Dying,+Death,+and+Grief+in+an+Online+Universe:+For+Counselors+and+Educators,+Springer+2012&ots=vdXYa_3cvU&sig=Od3eQ4A7_hadLwgIn4liIEoyo5c&redir_esc=y#v=onepage&q=%5BCarla%20Sofka%20and%20Illene%20Cupit%20(eds)%20%20Dying%2C%20Death%2C%20and%20Grief%20in%20an%20Online%20Universe%3A%20For%20Counselors%20and%20Educators%2C%20Springer%202012&f=false">blogging and online writing</a> does for so many.</p>
<p>Creativity may give voice to our experiences and provide some resilience as we face disintegration. It may also provide agency (an ability to act independently and make our own choices), and a sense of normality.</p>
<p>French doctor Benoit Burucoa <a href="https://www.cairn.info/article.php?ID_ARTICLE=INKA_181_0005">wrote</a> art in palliative care allows people to feel physical and emotional relief from dying, and:</p>
<blockquote>
<p>[…] to be looked at again and again like someone alive (without which one feels dead before having disappeared).</p>
</blockquote>
<h2>A way of communicating to loved ones and the public</h2>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/312718/original/file-20200130-41481-b1213u.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/312718/original/file-20200130-41481-b1213u.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/312718/original/file-20200130-41481-b1213u.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=982&fit=crop&dpr=1 600w, https://images.theconversation.com/files/312718/original/file-20200130-41481-b1213u.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=982&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/312718/original/file-20200130-41481-b1213u.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=982&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/312718/original/file-20200130-41481-b1213u.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1234&fit=crop&dpr=1 754w, https://images.theconversation.com/files/312718/original/file-20200130-41481-b1213u.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1234&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/312718/original/file-20200130-41481-b1213u.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1234&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">American tennis player and social activist Arthur Ashe wrote about his heart disease and subsequent diagnosis and death from AIDS.</span>
<span class="attribution"><span class="source">Ballantine Books</span></span>
</figcaption>
</figure>
<p>When someone who is dying creates a work of art or writes a story, this can open up otherwise difficult conversations with people close to them.</p>
<p>But where these works become public, this conversation is also with those they do not know, whose only contact is through that person’s writing, poetry or art. </p>
<p>This public discourse is a means of living while dying, making connections with others, and ultimately, increasing the public’s “<a href="https://www.ncbi.nlm.nih.gov/pubmed/29402101">death literacy</a>”.</p>
<p>In this way, our <a href="https://www.thegroundswellproject.com/">conversations about death</a> become <a href="https://www.penguin.com.au/books/the-end-9781742752051">more normal, more accessible</a> and much richer.</p>
<p>There is no evidence reading literary works about death and dying fosters <a href="https://en.wikipedia.org/wiki/Rumination_(psychology)">rumination</a> (an unhelpful way of dwelling on distressing thoughts) or other forms of psychological harm.</p>
<p>In fact, the evidence we have suggests the opposite is true. There is plenty of <a href="http://www.artshealthandwellbeing.org.uk/appg/arts-and-palliative-care-dying-and-bereavement">evidence</a> for the positive impacts of both making and consuming art (of all kinds) at the <a href="http://www.artshealthandwellbeing.org.uk/appg-inquiry/Briefings/WWCW.pdf">end of life</a>, and specifically <a href="https://spcare.bmj.com/content/7/3/A369.2">surrounding palliative care</a>.</p>
<h2>Why do we buy these books?</h2>
<p>Some people read narratives of dying to gain insight into this mysterious experience, and empathy for those amidst it. Some read it to <a href="https://www.nytimes.com/2012/03/18/opinion/sunday/the-neuroscience-of-your-brain-on-fiction.html">rehearse</a> their own journeys to come.</p>
<p>But these purpose-oriented explanations miss what is perhaps the most important and unique feature of literature – its delicate, multifaceted capacity to help us become what philosopher <a href="https://www.newyorker.com/magazine/2016/07/25/martha-nussbaums-moral-philosophies">Martha Nussbaum</a> <a href="https://www.jstor.org/stable/pdf/2026358.pdf?seq=1">described as</a>:</p>
<blockquote>
<p>[…] finely aware and richly responsible. </p>
</blockquote>
<p>Literature can capture the <a href="https://www.theguardian.com/books/2003/apr/01/londonreviewofbooks">tragedy</a> in ordinary lives; its depictions of <a href="https://partiallyexaminedlife.com/2016/08/12/martha-nussbaum-on-emotions-ethics-and-literature/">grief, anger and fear</a> help us fine-tune what’s important to us; and it can show the <a href="https://books.google.com.au/books/about/Love_s_Knowledge.html?id=oq3POR8FhtgC">value of a unique person</a> across their whole life’s trajectory.</p>
<h2>Not everyone can be creative towards the end</h2>
<p>Not everyone, however, has the opportunity for creative self-expression at the end of life. In part, this is because increasingly we die in hospices, hospitals or nursing homes. These are often far removed from the resources, people and spaces that may inspire creative expression.</p>
<p>And in part it is because many people cannot communicate after a stroke or dementia diagnosis, or are <a href="https://www.theatlantic.com/family/archive/2019/01/how-do-people-communicate-before-death/580303/">delirious</a>, so are incapable of “<a href="https://press.princeton.edu/books/hardcover/9780691628554/last-words">last words</a>” <a href="https://www.amazon.com/Final-Gifts-Understanding-Awareness-Communications/dp/1451667256">when they die</a>.</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>
<p>Perhaps most obviously, it is also because most of us are not artists, musicians, writers, poets or philosophers. We will not come up with elegant prose in our final days and weeks, and lack the skill to paint inspiring or intensely beautiful pictures.</p>
<p>But this does not mean we cannot tell a story, using whatever genre we wish, that captures or at least provides a glimpse of our experience of dying – our fears, goals, hopes and preferences. </p>
<p>Clive James <a href="https://www.theguardian.com/books/2018/sep/01/clive-james-poem-story-mind-heading-obivion">reminded us</a>:</p>
<blockquote>
<p>[…] there will still be epic poems, because every human life contains one. It comes out of nowhere and goes somewhere on its way to everywhere – which is nowhere all over again, but leaves a trail of memories. There won’t be many future poets who don’t dip their spoons into all that, even if nobody buys the book.</p>
</blockquote><img src="https://counter.theconversation.com/content/128061/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
Public figures, authors, artists and journalists have long written about their experience of dying. But why do they do it? And what do we gain?
Claire Hooker, Senior Lecturer and Coordinator, Health and Medical Humanities, University of Sydney
Ian Kerridge, Professor of Bioethics & Medicine, Sydney Health Ethics, University of Sydney
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/126915
2019-12-17T13:53:50Z
2019-12-17T13:53:50Z
Feeling sick is an emotion meant to help you get better faster
<figure><img src="https://images.theconversation.com/files/307274/original/file-20191216-123987-1po4o1j.jpg?ixlib=rb-1.1.0&rect=840%2C269%2C6344%2C4523&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The emotion of lassitude might help your body fight off infection by making certain adjustments.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/sick-boy-thermometer-laying-bed-child-1478490944">Kalinka Georgieva/Shutterstock.com</a></span></figcaption></figure><p>You know what it’s like to be sick. You feel fatigued, maybe a little depressed, less hungry than usual, more easily nauseated and perhaps more sensitive to pain and cold.</p>
<p>The fact that illness comes with a distinct set of psychological and behavioral features is not a new discovery. In medical terminology, the <a href="https://medlineplus.gov/ency/article/003089.htm">symptom of malaise</a> encompasses some of the feelings that come with being ill. Animal behaviorists and neuroimmunologists use the term <a href="https://doi.org/10.1093/icb/icp028">sickness behavior</a> to describe the observable behavior changes that occur during illness.</p>
<p>Health care providers often treat these symptoms as little more than annoying side effects of having an infectious disease. But as it turns out, these changes may actually be part of how you fight off infection.</p>
<p><a href="https://scholar.google.com/citations?user=qXvC94wAAAAJ&hl=en&oi=ao">I’m an anthropologist</a> interested in how illness and infection have shaped human evolution. My colleagues and I propose that all these aspects of being sick are features of an <a href="https://doi.org/10.1016/j.evolhumbehav.2019.09.002">emotion that we call “lassitude.”</a> And it’s an important part of how human beings work to recover from illness.</p>
<h2>Your body sets priorities when fighting germs</h2>
<p>The human immune system is a <a href="https://doi.org/10.1056/NEJM200007063430107">complex set of mechanisms</a> that help you suppress and eliminate organisms – such as bacteria, viruses and parasitic worms – that cause infection.</p>
<p>Activating the immune system, however, <a href="https://doi.org/10.1002/ajhb.21045">costs your body a lot of energy</a>. This presents a series of problems that your brain and body must solve to fight against infection most effectively. Where will this extra energy come from? What should you do to avoid additional infections or injuries that would increase the immune system’s energy requirements even more?</p>
<p>Fever is a critical part of the immune response to some infections, but the <a href="https://www.ncbi.nlm.nih.gov/books/NBK331/">energy cost of raising your temperature is particularly high</a>. Is there anything you can do to reduce this cost? </p>
<p>To eat or not to eat is a choice that affects your body’s fight against infection. On one hand, food ultimately provides energy to your body, and some foods even contain compounds that may <a href="https://doi.org/10.1016/S2221-1691(11)60016-6">help eliminate pathogens</a>. But it also <a href="https://doi.org/10.1186/1743-7075-1-5">takes energy to digest food</a>, which diverts resources from your all-out immune effort. Consuming food also increases your risk of acquiring additional pathogens. So what should you eat when you’re sick, and how much?</p>
<p>We humans are highly dependent on others to <a href="https://doi.org/10.1002/ajpa.10325">care for and support us when we’re sick</a>. What should you do to <a href="https://doi.org/10.1177/1474704915600559">make sure your friends and family care for you</a> when you’re ill?</p>
<p>My colleagues and I propose that the distinctive changes that occur when you get sick <a href="https://doi.org/10.1016/j.evolhumbehav.2019.09.002">help you solve these problems</a> automatically.</p>
<ul>
<li>Fatigue reduces your level of physical activity, which leaves more energy available for the immune system.</li>
<li>Increased susceptibility to nausea and pain makes you less likely to acquire an infection or injury that would further increase the immune system’s workload.</li>
<li>Increased sensitivity to cold motivates you to seek out things like warm clothing and heat sources that reduce the costs of keeping body temperature up.</li>
<li>Changes in appetite and food preferences push you to eat (or not eat) in a way that supports the fight against infection.</li>
<li>Feelings of sadness, depression and general wretchedness provide an honest signal to your friends and family that you need help.</li>
</ul>
<p>Of course these changes depend on the context. Any parents reading this article are likely familiar with the experience of being sick but pushing through it because a child needs care. While it may make sense to reduce food intake to prioritize immunity when the sick individual has plenty of energy reserves, it would be counterproductive to avoid eating if the sick person is <a href="https://doi.org/10.1016/j.bbi.2014.01.005">on the verge of starvation</a>. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/307275/original/file-20191216-124009-swa2ry.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/307275/original/file-20191216-124009-swa2ry.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/307275/original/file-20191216-124009-swa2ry.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/307275/original/file-20191216-124009-swa2ry.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/307275/original/file-20191216-124009-swa2ry.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/307275/original/file-20191216-124009-swa2ry.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/307275/original/file-20191216-124009-swa2ry.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/307275/original/file-20191216-124009-swa2ry.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">Your body needs you to do (or avoid) a few things so it can concentrate on getting better.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/black-woman-feeling-sick-seasonal-flu-1201292887">tommaso79/Shutterstock.com</a></span>
</figcaption>
</figure>
<h2>Sickness as an emotion</h2>
<p>So how does your body organize these advantageous responses to infection?</p>
<p>The evidence my colleagues and I reviewed suggests that humans possess a regulatory program that lies in wait, scanning for indicators that infectious disease is present. When it detects signs of infection, the program sends a signal to various functional mechanisms in the brain and body. They in turn change their patterns of operation in ways that are useful for fighting infection. These changes, in combination with each other, produce the distinct experience of being sick.</p>
<p>This kind of coordinating program is <a href="https://doi.org/10.1080/1047840X.2017.1256132">what some psychologists call an emotion</a>: an evolved computational program that detects indicators of a specific recurrent situation. When the certain situation arises, the emotion orchestrates relevant behavioral and physiological mechanisms that help address the problems at hand. </p>
<p>Imagine you’re walking through the woods, thinking you’re alone, and suddenly you are startled by sounds suggesting a large animal is in the underbrush nearby. Your pupils dilate, your hearing becomes attuned to every little sound, your cardiovascular system starts to work harder in preparation for either running away or defending yourself. These coordinated physiological and behavioral changes are produced by an underlying emotion program that corresponds to what you might think of as a certain kind of fear.</p>
<p>Some of these coordinating programs line up nicely with general intuitions about what makes up an emotion. Others have functions and features that we might not typically think of as “emotional.”</p>
<p>Some psychologists suggest these emotion programs likely evolved to respond to identifiable <a href="https://doi.org/10.1016/0162-3095(90)90017-Z">situations that occurred reliably over evolutionary time</a>, that would affect the survival or reproduction of those involved.</p>
<p>This way of thinking has helped researchers understand why some emotions exist and how they work. For instance, the <a href="https://doi.org/10.1098/rstb.2017.0203">pathogen disgust program</a> detects indicators that some potentially infectious agent is nearby. Imagine you smell the stench of feces: The emotion of disgust coordinates your behavior and physiology in ways that help you avoid the risky entity.</p>
<p>Another example is the <a href="https://doi.org/10.1073/pnas.1514699113">emotion of shame</a>, which scouts for signs that you’ve done something that causes members of your social group <a href="https://doi.org/10.1016/j.evolhumbehav.2018.05.010">to devalue you</a>. When you detect one of these indicators – a loved one rebukes you for doing something that hurt them, say – the experience of shame helps you adjust your mental map of what kinds of things will cause others to devalue you. Presumably you will try to avoid them in the future.</p>
<p>Drawing from the emerging discipline of <a href="https://doi.org/10.1093/emph/eox025">evolutionary medicine</a>, my colleagues and I now apply the idea of these emotion programs to the experience of being sick. We call this emotion “lassitude” to distinguish the underlying program from the outputs it generates, such as sickness behavior and malaise.</p>
<p>We hope that our approach to lassitude will help solve problems of practical importance. From a medical perspective, it would be useful to know when lassitude is doing its job and when it is malfunctioning. Health care providers would then have a better sense of when they ought intervene to block certain parts of lassitude and when they should let them be.</p>
<p>[ <em>Deep knowledge, daily.</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=deepknowledge">Sign up for The Conversation’s newsletter</a>. ]</p><img src="https://counter.theconversation.com/content/126915/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Joshua Schrock has received funding from the Wenner-Gren Foundation. </span></em></p>
Fighting off infection comes with predictable psychological and behavioral features. Now researchers suggest an emotion coordinates this response to help you get better. They call it ‘lassitude.’
Joshua Schrock, Ph.D. Candidate in Anthropology, University of Oregon
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/127155
2019-12-12T13:18:11Z
2019-12-12T13:18:11Z
Myths around mental illness cause high rates of unemployment
<figure><img src="https://images.theconversation.com/files/303555/original/file-20191125-74542-65sptd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many employees with mental illnesses don't get the help they need for fear of discrimination.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/stressed-young-businessman-sitting-outside-corporate-292792988?src=2d91591d-2f82-4df4-aaef-ccffa347dda7-1-48">pathdoc/Shutterstock.com</a></span></figcaption></figure><p>Even though mental illness <a href="https://www.nimh.nih.gov/health/statistics/mental-illness.shtml">affects one in five adults</a> – and depression is <a href="https://www.who.int/en/news-room/fact-sheets/detail/depression">the leading cause of disability worldwide</a> – secrecy and stigma around the issue continue.</p>
<p>The problem is especially acute in the workplace. While individuals with mental illness often wish to work and are able to, their unemployment rates remain <a href="https://link.springer.com/article/10.1007%2Fs00127-018-1535-9">three to four times those</a> of individuals without mental illness.</p>
<p>I’m <a href="https://medicine.yale.edu/profile/bandy_lee/">an expert on mental health</a>, and I have found that to dispel stigmas surrounding mental health in the workplace, researchers like me need first to tackle several myths. </p>
<h2>1. Everyone has different abilities</h2>
<p>Let us examine the first myth: that mental illness makes one less able to do a job.</p>
<p>Mental disorder does not interfere with all capacities, and can sometimes improve others. One study shows that <a href="https://journals.lww.com/jonmd/Abstract/2006/01000/Mental_Illness_In_U_S__Presidents_Between_1776_and.9.aspx">almost half of U.S. presidents suffered from some kind of mental disorder</a>. Some have performed <a href="https://read.amazon.com/kp/embed?asin=B004IYIUN8&tag=bing08-20&linkCode=kpp&reshareId=0D6PJ0ZEVRFEA39GGZ07&reshareChannel=system">the most challenging tasks in history</a>.</p>
<p>For example, Abraham Lincoln’s <a href="https://www.theatlantic.com/magazine/archive/2005/10/lincolns-great-depression/304247/">severe depression is said to have made him more compassionate</a>, while <a href="https://www.healthcentral.com/article/teddy-roosevelt-bipolar-or-not">Theodore Roosevelt’s hypomanic moods</a> made him an exuberant and influential personality.</p>
<p>There is plenty of evidence that, given the right supports, <a href="https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/supported-employment-for-people-with-severe-mental-illness-systematic-review-and-metaanalysis-of-the-international-evidence/D87504A18AB7E908624FF3FC94AF8F5C">people with mental illness can be successful at work</a>. Conversely, individuals do not have to have a mental illness <a href="https://theconversation.com/no-president-should-assume-office-without-a-fitness-for-duty-exam-107778">to lack the mental capacity</a> to do a job.</p>
<h2>2. Mental versus physical illness</h2>
<p>The second myth is that mental illness is associated with moral failing, unlike physical illness.</p>
<p>In our own lifetimes, we may remember the <a href="https://www.jstor.org/stable/2676360?casa_token=LNUjqmn59z8AAAAA:PACY7GS1xid3H3gxnBws1k4SsdYFHsjS-y6U38WxzcRJrhiHBXNNNN1uUO3WgWo-WmjYD7R9KqjZ1UpuxQQ1bdJNahnvS74unjFRD0QvN3bfjp1ldQ&seq=1#metadata_info_tab_contents">stigma and secrecy that surrounded cancer and AIDS</a>. Scientific research and education helped these prejudices give way to understanding.</p>
<p>The more we know, the more we understand that mental disorders are not moral failings or subjective complaints that people can simply “snap out” of, but are <a href="https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/distinction-between-mental-and-physical-illness/5FA9AC9A9A8F7D6395BF41B3CD004305">serious, debilitating and deadly medical conditions</a> like any other.</p>
<p>Within medicine, <a href="https://journals.sagepub.com/doi/10.1177/096228029800700306">psychiatric diagnoses are some of the most reliable</a>. And while there are no blood tests, there are <a href="https://www.sciencedirect.com/science/article/abs/pii/S0890856709606535">standardized scales that can be just as dependable</a> for diagnosing and monitoring prognosis.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/305051/original/file-20191203-67007-mijxmp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/305051/original/file-20191203-67007-mijxmp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/305051/original/file-20191203-67007-mijxmp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/305051/original/file-20191203-67007-mijxmp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/305051/original/file-20191203-67007-mijxmp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/305051/original/file-20191203-67007-mijxmp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/305051/original/file-20191203-67007-mijxmp.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">Trump has blamed mental illness for mass shootings.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/NRA-vs-San-Francisco/6f72f4fb33184f75b2ba36f8e5a18621/1/0">AP Photo/Michael Conroy</a></span>
</figcaption>
</figure>
<h2>3. Mental illness does not equal violence</h2>
<p>The third myth is that those who have mental illness are dangerous.</p>
<p><a href="https://psychcentral.com/lib/medias-damaging-depictions-of-mental-illness/">Media and public perception</a> continue to perpetuate this myth, even though large-scale studies have shown <a href="https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/mental-illness-and-violence">no difference in levels of violence</a> from the general population. People with mental illness are actually <a href="https://www.sciencedaily.com/releases/2014/02/140225101639.htm">more often victims of violent crimes</a> than perpetrators.</p>
<p>In 2017, after a mass shooting in Texas, President Donald Trump <a href="https://www.nytimes.com/2017/11/06/us/politics/trump-guns-mental-health.html">stated that</a> “mental health is your problem here … this isn’t a guns situation.” He reissued <a href="https://medium.com/@bandyxlee/mr-president-please-do-not-commit-more-violence-by-blaming-the-mentally-ill-a8c87fc853ce">similar statements after other mass shootings</a> in Parkland, Florida; in Pittsburgh, Pennsylvania; in Thousand Oaks, California; in El Paso, Texas; and in Dayton, Ohio.</p>
<p>This increases <a href="https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/stigma-as-a-cause-of-suicide/A7ACCE748A5FDF0346C8AB9A4ECE3A60">the victimization of mentally ill people</a>, as it augments the suffering of those already <a href="https://link.springer.com/article/10.1176/appi.ap.32.2.136">afflicted by stigma</a>.</p>
<h2>4. Challenging stigmas</h2>
<p>Finally and <a href="https://www.mayoclinic.org/diseases-conditions/mental-illness/in-depth/mental-health/art-20046477">sometimes fatally</a>, the myth persists that speaking about mental illness increases stigma.</p>
<p>Erving Goffman gives a compelling description of how stigma stereotypes a person <a href="https://www.simonandschuster.com/books/Stigma/Erving-Goffman/9780671622442">as abnormal, deformed and dangerous</a>. Stigma, hence, is a form of violence. It <a href="https://ajph.aphapublications.org/doi/10.2105/AJPH.2012.301147">originates from ignorance or misunderstanding</a> and harms <a href="https://ajph.aphapublications.org/doi/10.2105/AJPH.2012.301056">those suffering from mental illness</a> by depriving them of their humanity.</p>
<p>Stigma creates for people with mental illness <a href="https://www.tandfonline.com/doi/full/10.1080/09540260701278739">conditions for social exclusion</a>, <a href="https://insights.ovid.com/crossref?an=00001504-200609000-00014">employment discrimination</a>, <a href="https://jamanetwork.com/journals/jamapsychiatry/fullarticle/208861">victimhood to violent crime</a> and increased suffering, which can lead to <a href="https://academic.oup.com/schizophreniabulletin/article/33/6/1312/1898943">self-stigma, poor self-care</a> and <a href="https://www.cambridge.org/core/journals/epidemiology-and-psychiatric-sciences/article/mental-illness-stigma-secrecy-and-suicidal-ideation/CF10DA90F2B9FFF7BBAEA36ECEB67101">greater depression and suicide</a>.</p>
<p>For example, <a href="https://www.newsweek.com/donald-trump-adam-schiff-deranged-human-being-maniac-nato-summit-1475436">Trump recently accused</a> Intelligence Committee Chairman Adam Schiff of being a “a maniac … a deranged human being” and “a very sick man,” but he is not the only politician to do so. Invoking mental health as an insult <a href="https://link.springer.com/chapter/10.1007%2F978-3-319-27839-1_2">further stigmatizes those already suffering</a> in harmful ways.</p>
<p>Speaking about mental illness helps educate and dispel myths. Demystifying mental illness and distinguishing it from the person and a person’s abilities is critical to diminishing stigma and improving the lives of those already burdened with mental illness.</p>
<h2>Why people work</h2>
<p>Work is more than a means for material support. It is also a major way individuals <a href="https://link.springer.com/article/10.1007%2Fs11205-017-1697-y">stay mentally healthy and socially integrated</a>.</p>
<p>Especially for those dealing with a serious mental illness, employment is <a href="https://www.sciencedirect.com/science/article/abs/pii/S0001879119300636?via%3Dihub">important for</a> daily structure and routine, a sense of self, meaningful goals and opportunities for friendships and social support.</p>
<p>The workplace is therefore an important setting for speaking about mental health and illness. Breaking the silence can be <a href="http://www.psychiatrist.com/jcp/article/pages/2015/v76n02/v76n0204.aspx">beneficial for removing barriers</a> to seeking treatment, staying well and staying employed.</p>
<p>Employers already <a href="https://namipierce.org/why-employers-need-to-talk-about-mental-illness-in-the-workplace/">bear much of the burden of mental illness</a>. As <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5769115/">85% of employees’ mental health conditions go undiagnosed or untreated</a> as of 2017, employers subsume <a href="https://www.cdc.gov/nchs/hus/index.htm?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fnchs%2Fhus.htm">more than US$100 billion in lost revenue and 217 million lost workdays</a> each year. Prejudicial attitudes also exclude needed talent in the workforce.</p>
<p>Fear of discrimination <a href="https://www.cambridge.org/core/journals/epidemiology-and-psychiatric-sciences/article/stigma-and-discrimination-limit-access-to-mental-health-care/2FA22511D1878BA80162D7FDD891C00A">leads many not to seek care</a>, despite the <a href="https://journals.sagepub.com/doi/10.1177/1529100614531398">availability of successful treatments</a>.</p>
<p>Exclusion from the workforce <a href="https://www.researchgate.net/profile/Heather_Stuart2/publication/7906884_Stigma_and_Work/links/5706574208aea3d280210fbc.pdf">can result in</a> material deprivation, loss of self-confidence and self-identity, and isolation and marginalization that are key risk factors in mental health. High lifetime unemployment <a href="https://www.sciencedirect.com/science/article/abs/pii/S1936657415001077">even lowers life expectancy</a>, presumably as a combined result of stress, depression, reduced health care and loss of social networks.</p>
<p>Workplace interventions to interrupt the secrecy and stigma surrounding mental illness <a href="https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-015-0706-4">can be effective</a>. Some programs might involve psychoeducation, increasing mental health literacy, workshops, online courses that target prejudicial attitudes and behavior, and crisis intervention training.</p>
<p>Awareness of inequalities with respect to race, gender, age, sexuality, class and other related factors, as well as the benefits of diversity, <a href="https://www.forbes.com/sites/rsmdiscovery/2018/08/22/why-workplace-diversity-is-so-important-and-why-its-so-hard-to-achieve/#232c01eb3096">have grown recently</a>, but society has a long way to go with mental illness.</p>
<p>[ <em>Get the best of The Conversation, every weekend.</em> <a href="https://theconversation.com/us/newsletters/weekly-highlights-61?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=weeklybest">Sign up for our weekly newsletter</a>. ]</p><img src="https://counter.theconversation.com/content/127155/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Bandy X. Lee previously received funding from the National Institute of Mental Health (NIMH).</span></em></p>
Stigmas surrounding mental health can create difficult or even dangerous situations for employees struggling with mental illness.
Bandy X. Lee, Assistant Clinical Professor, Yale School of Medicine, Yale University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/125330
2019-10-15T15:20:17Z
2019-10-15T15:20:17Z
Most people don’t wash their hands properly – here’s how it should be done
<figure><img src="https://images.theconversation.com/files/297177/original/file-20191015-98653-iqr2x7.jpg?ixlib=rb-1.1.0&rect=26%2C13%2C4426%2C2951&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.pexels.com/photo/person-washing-his-hand-545014/">Pexels</a></span></figcaption></figure><p>It’s something most people do everyday, often without really thinking about it, but how you wash your hands can make a real difference to your health and the well-being of those around you.</p>
<p>Washing your hands is the one most <a href="https://www.ijidonline.com/article/S1201-9712(04)00172-9/fulltext">effective method</a> to prevent cross-contamination which can cause the spread of illness and infections. And many research studies have shown how improvements in hand hygiene have resulted in reductions in illness. </p>
<p><a href="https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD004265.pub3/information">A look at research from around the world</a> on the promotion of washing hands with soap, found that such interventions resulted in a <a href="https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1365-3156.2006.01568.x">30% reduction</a> in diarrhoea episodes and respiratory illnesses such as colds. <a href="https://www.ajicjournal.org/article/S0196-6553(17)30041-X/fulltext">Hand hygiene interventions</a> at elementary schools in the US similarly helped to reduce sick days associated with acute gastrointestinal illness by 31%.</p>
<p>The impact of good hand hygiene is even greater among people that have an increased risk of infection. A <a href="https://www.microbiologyresearch.org/content/journal/jmm/10.1099/jmm.0.46867-0#tab2">study</a> from 2007, for example, found that patients with AIDS who washed their hands more frequently got ill less often.</p>
<p>But as <a href="https://jfoodprotection.org/doi/abs/10.4315/0362-028X.JFP-17-378">our recent research shows</a>, despite awareness of the importance of washing your hands, people often fail to do it properly. In our study, we observed how adults over the age of 60 prepared food in a domestic kitchen set up with CCTV cameras, and found that only 30% of people properly washed and dried their hands before preparing food. </p>
<p>We found that 90% of people failed to wash and dry their hands properly immediately after handling raw chicken. And that 62% failed to rub hands, palms and between fingers when washing hands. We also discovered that 47% of people in our study failed to use soap during one or more hand washing attempt.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/297144/original/file-20191015-98661-1p6wgp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/297144/original/file-20191015-98661-1p6wgp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/297144/original/file-20191015-98661-1p6wgp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=374&fit=crop&dpr=1 600w, https://images.theconversation.com/files/297144/original/file-20191015-98661-1p6wgp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=374&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/297144/original/file-20191015-98661-1p6wgp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=374&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/297144/original/file-20191015-98661-1p6wgp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=470&fit=crop&dpr=1 754w, https://images.theconversation.com/files/297144/original/file-20191015-98661-1p6wgp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=470&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/297144/original/file-20191015-98661-1p6wgp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=470&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 model domestic kitchen.</span>
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</figure>
<p>We also swabbed the kitchen and found that those who adequately washed their hands, had significantly lower levels of microbiological contamination levels in the kitchen following food preparation sessions.
<a href="https://www.emerald.com/insight/content/doi/10.1108/00070700510606873/full/html">Other studies</a> have also determined that failing to wash hands adequately after handling raw poultry can transfer bacteria to domestic kitchen surfaces – such as the handles of taps and refrigerators. All of which highlights the importance of properly washing your hands.</p>
<h2>How to wash your hands</h2>
<p>The World Health Organisation <a href="https://www.who.int/foodsafety/publications/consumer/manual_keys.pdf">recommends</a> that to wash your hands effectively, it needs to be done with clean water and soap. Hands should be rubbed together for at least 20 seconds, followed by rinsing. Hands must also be dried using either disposable kitchen paper or a clean hand towel.</p>
<p>The use of soap is particularly important for hand washing to be effective. Indeed, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3037063/">research</a> has shown that washing with soap significantly reduced the presence of bacteria on hands. </p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/1XVhNEoxtN8?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
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<p>The soap doesn’t have to be antibacterial to be effective – though antibacterial soap works on reducing the number of bacteria not just removing them. And research has <a href="https://ajph.aphapublications.org/doi/full/10.2105/AJPH.2007.124610">shown</a> that the use of non-antibacterial soap is successful for preventing both gastrointestinal and respiratory illnesses.</p>
<p>You should spend 20 seconds washing and drying your hands. Here’s how to do it properly: wet your hands with clean water, use soap, rub palm to palm, rub back of hands, rub between fingers, rub fingernails, rinse your hands. Then dry them using a clean towel or kitchen paper.</p>
<h2>Dry them properly too</h2>
<p>Hand drying is also very important to prevent contamination from hands to food, surfaces and equipment as the transmission of bacteria is <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2809004/">more likely</a> to occur from wet skin than from dry skin. So the proper drying of hands after washing should be an <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538484/">integral part</a> of hand hygiene. </p>
<p>Drying your hands properly also removes a significant number of bacteria following hand washing – drying with a towel removes pathogens by means of friction, on top of the removal of moisture. Though this means that a hand towel can become a site for cross-contamination. Indeed, in <a href="https://jfoodprotection.org/doi/abs/10.4315/0362-028X.JFP-17-378">our study</a> we found that 37% of people used the same towel for drying hands and equipment.</p>
<p>It is essential to wash hands on occasions when they may be contaminated such as before, during, and after preparing food – particularly after handing raw meat and poultry – after using the toilet, after blowing your nose, coughing, or sneezing and after touching an animal.</p>
<p>This is important, because washing our hands properly can mean the difference between sickness and health. And for people with compromised immune systems it can even mean the difference between life and death – so make sure you do it properly. If in doubt follow the tips above and sing “<a href="https://tools.cdc.gov/medialibrary/index.aspx#/media/id/302345">Happy Birthday</a>” twice to allow enough time to remove and rinse away any germs.</p><img src="https://counter.theconversation.com/content/125330/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ellen W. Evans received funding for research referred to in this article from the Cardiff Metropolitan University Vice Chancellor's Doctoral Award and Tenovus Cancer Care. She is affiliated with the International Association for Food Protection. This article refers to research co-authored with Dr Elizabeth C. Redmond.</span></em></p>
Despite awareness of the importance of hand washing, most people often fail to do it properly.
Ellen W. Evans, Junior Research Fellow, Cardiff Metropolitan University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/123870
2019-10-01T20:04:02Z
2019-10-01T20:04:02Z
Does your mental state affect recovery from illness and disease? We asked five experts
<figure><img src="https://images.theconversation.com/files/293521/original/file-20190923-23774-1d3xavc.jpg?ixlib=rb-1.1.0&rect=0%2C1%2C997%2C664&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A positive mindset can affect some aspects of disease, but grief is normal and to be expected. </span> <span class="attribution"><span class="source">from www.shutterstock.com</span></span></figcaption></figure><p>Many of those who’ve suffered from illness or disease would have received the advice to “stay positive”. Is this sage advice that can truly have a positive effect on health, or an added burden for someone who is already suffering – the need to also feel good about it?</p>
<p>We asked five experts in various fields whether a positive mindset can affect outcomes for those suffering from illness and disease. </p>
<h2>Five out of five experts said yes</h2>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/293524/original/file-20190923-23817-110yysw.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/293524/original/file-20190923-23817-110yysw.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=99&fit=crop&dpr=1 600w, https://images.theconversation.com/files/293524/original/file-20190923-23817-110yysw.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=99&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/293524/original/file-20190923-23817-110yysw.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=99&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/293524/original/file-20190923-23817-110yysw.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=125&fit=crop&dpr=1 754w, https://images.theconversation.com/files/293524/original/file-20190923-23817-110yysw.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=125&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/293524/original/file-20190923-23817-110yysw.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=125&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<p>However, they had some important caveats. It depends on the disease – for example, one expert said studies in cancer have not found positive thinking affects disease progression or the likelihood of early death. </p>
<p>And while our mental health can have powerful effects on our physical health, the perceived need to “stay positive” can be an added burden during a difficult time. So it’s also important to remember grief is normal.</p>
<p><strong><em>Here are the experts’ detailed responses:</em></strong></p>
<p><iframe id="tc-infographic-435" class="tc-infographic" height="400px" src="https://cdn.theconversation.com/infographics/435/5c7b81d0df77750d05e43af2d8312a2b7f5548fd/site/index.html" width="100%" style="border: none" frameborder="0"></iframe></p>
<hr>
<p><em>If you have a “<strong>yes or no</strong>” health question you’d like posed to Five Experts, email your suggestion to: alexandra.hansen@theconversation.edu.au</em></p>
<hr>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/210303/original/file-20180314-113452-h7un11.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/210303/original/file-20180314-113452-h7un11.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/210303/original/file-20180314-113452-h7un11.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/210303/original/file-20180314-113452-h7un11.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/210303/original/file-20180314-113452-h7un11.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/210303/original/file-20180314-113452-h7un11.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/210303/original/file-20180314-113452-h7un11.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<p><em>Erica Sloan is a member of the Scientific Advisory Board of Cygnal Therapeutics. Jayashri Kulkarni receives funding from the NHMRC.</em></p><img src="https://counter.theconversation.com/content/123870/count.gif" alt="The Conversation" width="1" height="1" />
We asked five experts if your mental state can affect how well you recover from illness and disease. Five out of five said yes.
Alexandra Hansen, Deputy Editor and Chief of Staff, The Conversation AUNZ
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/114038
2019-08-06T12:37:02Z
2019-08-06T12:37:02Z
I sent my DNA to Norway for personalised nutrition advice, what I discovered made me rethink my diet completely
<figure><img src="https://images.theconversation.com/files/286921/original/file-20190805-36377-4hevar.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">shutterstock</span></span></figcaption></figure><p><a href="https://theconversation.com/personalised-nutrition-unravels-why-you-are-what-you-eat-12668">Personalised nutrition</a>, where your DNA tells you what to eat and what not to eat, is gaining momentum. And for those with money to spare, a number of companies now offer fully personalised nutritional advice aimed at improving your overall health.</p>
<p>Having <a href="http://web.dmz.brad.ac.uk/social-sciences/staff-profiles/psychology/stewart-knox-j-barbara.php">researched this area</a> for a number of years, I thought it was time to put my money where my mouth is and find out for myself what it feels like to receive personalised nutrition advice based on my genetics. So I sent off a saliva sample to a company in Norway that came highly recommended by a dietitian friend. </p>
<p>The results came back and I was shocked to discover I have a <a href="https://theconversation.com/blame-it-on-mum-and-dad-how-genes-influence-what-we-eat-45244">genetic predisposition</a> to high cholesterol and cardiovascular disease, both of which can be prevented by making simple dietary changes – which I have since made. Seeing the evidence related to me, only me, and not a generic healthy eating note, literally brought the message home. At first glance I saw only my eventual mortality. But looking again in a more positive light, I saw that I now held the key to postponing that mortality and took action. </p>
<p>To cut a long story short, I am now pretty much teetotal and “B” vitamin pill popping, as according to my genetics, I cannot absorb what I need from diet alone. And because meat is the main source of <a href="https://theconversation.com/can-having-high-cholesterol-reduce-your-chances-of-dementia-92367">LDL cholesterol</a> – the one that’s sometimes called “bad cholestrol” as it’s known to raise your risk for heart disease and stroke – I am now <a href="https://theconversation.com/why-arent-more-people-vegetarian-58367">vegetarian</a> and my cholesterol is normal. </p>
<p>Of course this regime would not be “<a href="https://theconversation.com/what-is-a-balanced-diet-anyway-72432">healthy</a>” for everyone as not everyone is alcohol intolerant. Nor will everyone have a genetic tendency toward <a href="https://theconversation.com/cardiovascular-disease-declines-in-rich-countries-but-poor-countries-suffer-more-25277">cardiovascular disease</a>. It wasn’t all bad news though, apparently I am caffeine and dairy tolerant so can enjoy cheese (reduced fat of course) and thankfully, coffee.</p>
<h2>Digesting data</h2>
<p>But doing the test got me thinking, doesn’t everyone have a right to know their <a href="https://theconversation.com/nutrigenomics-how-nutrition-and-genetics-impact-health-11875">dietary related health risk</a>? And aren’t younger people best placed to make changes that can bring about a sustainable benefit to health and well-being? And what about the majority of people in society who do not have the money to throw away on something that may only deliver benefit if dietary changes are achieved? </p>
<p>Whether I made dietary changes or not, I had a right to know this information about my health. And it’s a pity I did not have this information in my twenties rather than in my sixties, by which time there may already be irreparable damage to my body. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/286925/original/file-20190805-36367-bnoddz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/286925/original/file-20190805-36367-bnoddz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/286925/original/file-20190805-36367-bnoddz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/286925/original/file-20190805-36367-bnoddz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/286925/original/file-20190805-36367-bnoddz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/286925/original/file-20190805-36367-bnoddz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/286925/original/file-20190805-36367-bnoddz.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">The technology is there, so why aren’t we utilising it?</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>At the moment, such information is only available to those who can afford to pay for it. And the problem with this approach is that if public health services fail to roll out <a href="https://theconversation.com/you-are-what-you-eat-why-the-future-of-nutrition-is-personal-119477">personalised nutrition</a> to everyone as part of routine health care, it could soon lead to widened health inequalities – which would create a <a href="https://www.researchgate.net/publication/225294582_Associations_between_obesity_BMI_and_waist_circumference_and_socio-demographic_factors_physical_activity_dietary_habits_life_events_resilience_mood_perceived_stress_and_hopelessness_in_healthy_older_E">negative health impact</a> in and of itself.</p>
<h2>Make the future personal</h2>
<p><a href="https://www.bbc.co.uk/news/health-25588544">At the start of 2019 the NHS pledged</a> to collect genetic information on all patients attending clinics. But this is probably a case of too little too late, as people attending clinics are already likely to have conditions that are developing. Given that personalised nutrition technologies are already available, it seems unethical to let people go through life not knowing how they can prevent themselves from becoming ill. And <a href="https://www.eufic.org/en/collaboration/article/eu-funded-food4me-project-paves-way-for-personalised-nutrition-to-better-pu">as research shows</a>, personalised nutrition goals can be motivating to patients. </p>
<p>The European funded <a href="https://www.eufic.org/en/healthy-living/article/personalised-nutrition-food4me-project">Food4me research project</a> that I collaborated in, found that a personalised approach was motivating not only because the information upon which advice is based is tailored, but also because it puts the individual in control. </p>
<p>It’s clear then that we need to start using genetic based technology to prevent diseases now. Personalised nutrition has the potential to reduce the burden of disease on health services and in doing so reduce public spending on health care. Of course, not all patients will make all the changes needed, but once people have this information, what they do with it is up to them – and it’s their choice to make.</p><img src="https://counter.theconversation.com/content/114038/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Barbara J Stewart-Knox received funding from the European Commission
as a collaborator in Food4me </span></em></p>
Personalised nutrition has the power to save lives.
Barbara J Stewart-Knox, Professor of Psychology, University of Bradford
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/108433
2019-01-30T13:58:03Z
2019-01-30T13:58:03Z
What is medicine? Why it’s so important to answer this question
<figure><img src="https://images.theconversation.com/files/256057/original/file-20190129-108364-17hlc1x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Is medicine cure? Treatment? Healing? Understanding? Or a bit of all those things.</span> <span class="attribution"><span class="source">Kenishiroti/Shutterstock</span></span></figcaption></figure><p>What is medicine? We recognise it in all societies past and present. But the nature of medicine differs so greatly from place to place and time to time that it’s difficult to offer a single answer. So what is it that we see in common between a traditional healer’s throwing of bones and the cardiologist’s incisions?</p>
<p>One of the answers that often seems to be implicit in what we say and think about medicine is a <em>curative thesis</em>: medicine’s goal is to cure the sick. Curing the sick is the core medical competence, whose exercise is medicine’s core business.</p>
<p>But if the curative thesis is true, then most medicine throughout history – as well as much contemporary medicine – isn’t medicine at all. Much medicine was and is ineffective, or at best partially effective. The curative thesis leads to a dismissive attitude towards the past efforts upon which any current medicine is built, as well as failing to promote profitable collaboration between traditions.</p>
<p>A second idea is an <em><a href="http://www.cmaj.ca/content/191/4/E105">inquiry thesis</a></em> about medicine: although the goal of medicine is to cure, its core business is something quite different. It’s this thesis I explore in <a href="http://www.cmaj.ca/content/191/4/E105">my latest article</a>.</p>
<p>That “something” has to do with inquiring into the nature and causes of health and disease. The idea is that we don’t necessarily expect someone to be able to cure us. We will accept that they are a medical expert if they can show an understanding of our ailment, often by issuing an accurate prognosis. Perhaps they won’t have a complete understanding, but they should somehow be engaged with the larger project of inquiry into the nature and causes of health and disease.</p>
<p>The inquiry thesis offers a way to understand the history of medicine that makes it more than a tale of quackery and gullibility. It also provides a way to understand medical traditions that practised outside the West, or in the West in defiance of the mainstream. They may offer or at least engage with a project of obtaining; a kind of understanding that Western medicine cannot. </p>
<p>The inquiry model of medicine lays the ground for fruitful and respectful discussions between medical traditions that doesn’t descend into an untenable relativism about what works. </p>
<h2>Towards understanding</h2>
<p>The curative thesis faces a difficulty that I believe it cannot overcome.</p>
<p>We do not define an activity by its goal alone, unless it has at least some success in that respect. A blacksmith cannot be defined as one who makes horseshoes if he simply throws lumps of hot metal onto his anvil and hammers them randomly – occasionally producing something horseshoe-like, but more often producing a mess.</p>
<p>Yet, taking a historical perspective, something of this kind has been true of medicine for much of its history, before it developed a serious curative arsenal. <a href="https://www.cambridge.org/vi/academic/subjects/history/history-medicine/cambridge-history-medicine?format=PB">Historian of medicine Roy Porter</a> has remarked that</p>
<blockquote>
<p>the prominence of medicine has lain only in small measure in its ability to make the sick well. This was always true, and remains so today. </p>
</blockquote>
<p>What, then, could be the business of medicine – the thing in which we recognise expertise, even when we accept that there is no cure to be had?</p>
<p>This is where the inquiry model enters the picture. <a href="http://www.cmaj.ca/content/191/4/E105">I propose</a> that the business of medicine is understanding the nature and causes of health and disease, for the purpose of cure.</p>
<p>The core of the argument is simple: what could medical persons be good at doing, that relates to the goal of cure without achieving it? The most likely candidate is understanding. Understanding is something that we can gain without corresponding curative success. </p>
<h2>Tackling objections</h2>
<p>As with the curative thesis, there are several objections to the inquiry model. First, it is obvious that many doctors either don’t (fully) understand what they treat or, if they do, don’t (successfully) communicate this understanding to the patient. Who, then, understands? In what sense is the doctor’s competence understanding?</p>
<p>The answer is that understanding isn’t a binary. You can <em>partially</em> understand something. You can be one the road to understanding it better, by <em>inquiring</em> into it. Hence the <em>inquiry</em> model of medicine. The idea is not that medicine is a sack full of answers, but rather that it is an ongoing effort to find answers.</p>
<p>Another objection is that so-called understanding is often bogus, and that medicine is as unsuccessful in this regard as in cure. This fails to account for the historical record, which – at least for Western medicine –- is precisely a case of understanding without curative success. </p>
<p>And, just as false scientific theories have contributed to <a href="https://www.encyclopedia.com/science/science-magazines/physics-newtonian-physics">developing scientific understanding</a>, so <a href="http://broughttolife.sciencemuseum.org.uk/broughttolife/techniques/miasmatheory">false medical theories</a> have provided a foundation for what we now accept.</p>
<p>Medicine is an ancient and complex social phenomenon, variously seen as art, science and witchcraft. These visions share the goal of curing disease. But it is too crude to think medicine as <em>only</em> the business of curing, since in that case, few doctors would be in business. </p>
<p>The distinctive feature of medicine is that it tries to cure by obtaining some understanding of the nature and causes of health and disease: by inquiry, in short. This understanding of medicine permits a much healthier dialogue between proponents of different traditions, and enables a non-defensive perspective on areas where we remain sadly lacking in curative ability. </p>
<p><em>This is an edited, shortened version of an article that first appeared in the Canadian Medical Association Journal, <a href="http://www.cmaj.ca/content/191/4/E105">‘The inquiry model of medicine’</a>, accompanied by a podcast available on the article’s page and also <a href="https://jonathanfuller.ca/podcast/2019/1/26/alex-broadbent-what-is-medicine">here</a>.</em></p><img src="https://counter.theconversation.com/content/108433/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alex Broadbent receives funding from the National Research Foundation of South Africa.</span></em></p>
If the curative thesis is true, then most medicine throughout history – as well as much contemporary medicine – isn’t medicine at all.
Alex Broadbent, Executive Dean, Faculty of Humanities and Director, African Centre for Epistemology and Philosophy of Science, University of Johannesburg
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/107310
2019-01-03T10:23:54Z
2019-01-03T10:23:54Z
Dealing with devil has long been a part of medicine
<figure><img src="https://images.theconversation.com/files/251258/original/file-20181218-27773-1uc7owk.jpg?ixlib=rb-1.1.0&rect=32%2C7%2C1621%2C1118&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://en.wikipedia.org/wiki/File:Nuremberg_chronicles_-_Devil_and_Woman_on_Horseback_(CLXXXIXv).jpg">Illustrations from the Nuremberg Chronicle, by Hartmann Schedel (1440-1514)</a></span></figcaption></figure><p>Thirty children in Amsterdam began to show signs of a disturbing affliction in the winter of 1566. The symptoms would strike without warning: the children would at first be seized by a violent frenzy, then fall to the ground, their bodies wracked with painful convulsions. Once the fits had passed, the children reported no memory of them.</p>
<p>This already looked like the work of the devil, but any lingering doubts were put to rest when the children began vomiting strange objects, like pins and shards of glass. They were experiencing, it seemed, a mass demonic possession. Multiple exorcisms would be attempted, but not before first exhausting the expertise of physicians, who often worked alongside ecclesiastical healers to mitigate the effects of such demonic assaults. </p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/251734/original/file-20181220-45403-1dnz01w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/251734/original/file-20181220-45403-1dnz01w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=927&fit=crop&dpr=1 600w, https://images.theconversation.com/files/251734/original/file-20181220-45403-1dnz01w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=927&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/251734/original/file-20181220-45403-1dnz01w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=927&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/251734/original/file-20181220-45403-1dnz01w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1165&fit=crop&dpr=1 754w, https://images.theconversation.com/files/251734/original/file-20181220-45403-1dnz01w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1165&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/251734/original/file-20181220-45403-1dnz01w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1165&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Portrait of Johann Weyer.</span>
<span class="attribution"><a class="source" href="https://wellcomecollection.org/works/e39fm96j">Wellcome Collection</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Shortly afterwards, in the nearby Duchy of Cleve, the learned physician Johann Weyer read about this mass possession, reaching him through the account of the chancellor in Gelderland. His interest was professional. Weyer himself did not believe that strange objects had actually been vomited, but he did not question that reliable authorities had witnessed this happen. Neither did he deny diabolical agency. </p>
<p>Instead, he reinterpreted the scope of demonic power to emphasise the devil’s longstanding status as a master trickster. The extraordinary regurgitation, he argued, was a mere illusion, a common embellishment in fact of natural illnesses often caused by the devil.</p>
<p>Faced with Weyer’s evaluation, modern sensibilities are left reeling. The physician’s scepticism soon appears to be countered by near incomprehensible credulity in the devil’s agency. We are compelled to ask: But what really happened? Many <a href="https://lareviewofbooks.org/article/the-dispossessed-brian-levacks-the-devil-within/#!">explanations</a> have been offered for similar reports of demonic possession, often invoking categories from modern medicine or pointing to the possibility of fraud (which was considered seriously by early moderns as well). </p>
<p>But this gives us only a limited view of a much larger and much more complex landscape of healing in the early modern period. This was a time in which growing belief in demonic activity in the natural world genuinely shaped the understanding and experience of illness.</p>
<h2>Recognising possession</h2>
<p>Weyer’s account of the mass possession in Amsterdam was first published as a small part of his broader evaluation of demonic power in the 1568 edition of his book <a href="https://books.google.de/books?id=TgQ6AAAAcAAJ&pg=PA1#v=onepage&q&f=false">On the Illusions of Demons</a>. There, we find many such cases that indicate the characteristic signs looked for by professionals who suspected the activity of the devil. </p>
<p>In addition to the physiological – such as physical pain and convulsions – more indicative psychological signs were sought, such as the demonstration of hidden knowledge, prognostication, and xenoglossy, which involved speaking in unlearned languages (especially with strange vocal alterations). Often reports of demonic possession did indeed include the expulsion of strange objects, such as, in more extreme cases, knives or live eels. Despite these extraordinary symptoms, the diagnosis of demonic afflictions was not always straightforward.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/251261/original/file-20181218-27764-wf91gt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/251261/original/file-20181218-27764-wf91gt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=672&fit=crop&dpr=1 600w, https://images.theconversation.com/files/251261/original/file-20181218-27764-wf91gt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=672&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/251261/original/file-20181218-27764-wf91gt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=672&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/251261/original/file-20181218-27764-wf91gt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=845&fit=crop&dpr=1 754w, https://images.theconversation.com/files/251261/original/file-20181218-27764-wf91gt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=845&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/251261/original/file-20181218-27764-wf91gt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=845&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A bishop exorcising men possessed of evil spirits. France, 15th century.</span>
<span class="attribution"><a class="source" href="https://wellcomecollection.org/works/np95rkjn?query=Exorcism">Wellcome Collection</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Weyer’s work tells us much about the diverse ways in which the devil was thought to operate, both in illusion and in reality – and the ways in which this complicated medicine in his time. The devil, who was often called “prince of this world”, was understood to be precisely that. Rather than wielding truly supernatural power, the devil and his demons were understood to be restricted to working in nature, which they often did in ways that escaped human understanding. These natural powers included the ability to manipulate the four humours that were believed to govern health. This meant that any natural illness, in theory, could be hiding the hand of the devil as its primary cause.</p>
<p>The possibility of demonic agency would not usually be considered unless natural medicines first proved ineffective, but ineffective medicine was not taken uncritically to indicate a demonic cause. Physical convulsions, for instance, were also associated with natural diseases such as epilepsy, which was already understood to be unpredictable, chronic, and potentially incurable. For physicians, demonic agency was not simply an explanation for inexplicable illnesses: it was one of many possible explanations for illnesses that might in other cases be diagnosed as purely natural. </p>
<p>While the activity of the devil might be a speciality of the priest, the psychosomatic symptoms associated with demonic possession also required the physician’s expertise to investigate the potential for purely natural causation.</p>
<h2>Healing the possessed</h2>
<p>Like today, medical diagnosis in the early modern period was fraught with difficulties. Learned physicians were rare and expensive, and in fact most healing took place in the home and among neighbours, as had long been the norm. In severe cases, rather than face the uncertainty of a learned physician – or worse, the determination that the illness was in fact incurable – most would naturally prefer the succour of the priest, who was far more accessible and often better equipped to help the unwell come to terms with their illness. </p>
<p>And indeed in practice, the boundaries between ecclesiastical healing and medicine were far more fluid than the terms “priest” and “physician” might suggest. These boundaries were regularly traversed in exorcism by lay healers who prescribed both natural medicines and prayer in answer to demonic afflictions.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/251262/original/file-20181218-27755-dho0o6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/251262/original/file-20181218-27755-dho0o6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=521&fit=crop&dpr=1 600w, https://images.theconversation.com/files/251262/original/file-20181218-27755-dho0o6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=521&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/251262/original/file-20181218-27755-dho0o6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=521&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/251262/original/file-20181218-27755-dho0o6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=654&fit=crop&dpr=1 754w, https://images.theconversation.com/files/251262/original/file-20181218-27755-dho0o6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=654&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/251262/original/file-20181218-27755-dho0o6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=654&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A bewitched woman vomiting. Woodcut, 1720.</span>
<span class="attribution"><a class="source" href="https://wellcomecollection.org/works/ax6dnfv3?query=devil%20vomiting">Wellcome Collection</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Weyer concluded that the most extraordinary signs of the mass possession at Amsterdam were illusory, leaving the remaining symptoms – and therefore demonic afflictions in general – much more accessible to medical intervention. For him, diabolical agency was a real factor in the subtle negotiation of diagnosis and treatment. What he understood to be the natural mechanisms of demonic activity meant that medical practitioners always had a role in addressing the symptoms of demonic afflictions.</p>
<p>Today, more than 400 years on, Catholic priests in America <a href="https://www.theatlantic.com/magazine/archive/2018/12/catholic-exorcisms-on-the-rise/573943/">reportedly</a> field requests for exorcisms numbering in the thousands every year. Their first recourse is to mental health professionals, belying a continuity with exorcism as it was practised in Weyer’s time. In this respect, the professionals who confront reports of demonic possession today are in agreement with their early modern predecessors: call the physician first.</p><img src="https://counter.theconversation.com/content/107310/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Laura Sumrall 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>
Reports of demonic possession are once again on the rise. But during the devil’s last apogee in early modern Europe, demonic afflictions were taken seriously by both priests and physicians.
Laura Sumrall, Visiting Predoctoral Fellow, Max Planck Institute for the History of Science
Licensed as Creative Commons – attribution, no derivatives.