tag:theconversation.com,2011:/id/topics/patients-6375/articlesPatients – The Conversation2024-03-24T11:54:07Ztag:theconversation.com,2011:article/2254302024-03-24T11:54:07Z2024-03-24T11:54:07ZIncurable but not hopeless: How hope shapes patients’ awareness of their advanced cancer prognosis<figure><img src="https://images.theconversation.com/files/583288/original/file-20240320-17-am5kz4.jpg?ixlib=rb-1.1.0&rect=52%2C0%2C4932%2C3325&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies and exploring realistic goals.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Hope is defined as the expectation of achieving a future good. Patients with cancer, whether it is curable or not, <a href="https://doi.org/10.1007/s00520-007-0336-6">prioritize cure as their highest hope</a>. </p>
<p>Patients with incurable cancer <a href="https://doi.org/10.1007/s005200100290">wish to be informed</a> about their disease and its treatment, but also need to maintain hope. This inner conflict can impact how they process information about their prognosis.</p>
<h2>Prognostic awareness</h2>
<p><a href="https://doi.org/10.1111/1467-8519.00330">Physicians are ethically obligated</a> to inform patients about their prognosis so that patients can make cancer treatment decisions that are consistent with their values. <a href="https://doi.org/10.1177/1359105313484782">When oncologists talk to patients about prognosis</a>, they tend to talk about the extent of the disease (localized or metastatic), the goal of the treatment (curative or palliative) and the estimated survival (short months or many years). </p>
<p>Communication about prognosis can be challenging due to physician factors such as skill in discussing bad news, and patient factors such as denial. Some patients with incurable cancer, who are aware of their prognosis but haven’t accepted it, <a href="https://doi.org/10.1177/10499091211014166">will say the treatment goal is cure</a>.</p>
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<img alt="A younger woman hugging a seated older woman from behind" src="https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.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">
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<span class="caption">Hope is a recognized coping strategy in patients with cancer.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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<p><a href="https://doi.org/10.1177/0269216316663976">Previous research indicates</a> that less than half of patients with incurable cancer are aware of their prognosis. This is often attributed to a failure of communication. </p>
<p>But are patients truly unaware, or are they aware and not accepting of their prognosis? If inaccurate prognostic awareness is due to denial in spite of adequate communication from the oncologist, then interventions to improve communication may be <a href="https://doi.org/10.1023/a:1008336415362">ineffective, misguided or even harmful</a>.</p>
<p>Patients with incurable cancer are more likely to receive <a href="https://doi.org/10.1001/jama.300.14.1665">end-of-life care concordant with their preferences</a> when they have accurate prognostic awareness. Inaccurate prognostic awareness can lead to conflicting treatment decision-making between patients and oncologists, delayed referral to palliative care and more aggressive care at the end of life.</p>
<p>In a study of patients with advanced lung cancer, those who received early palliative care and had accurate prognostic awareness were more likely not to choose <a href="https://doi.org/10.1200/jco.2010.32.4459">intravenous chemotherapy in the last two months of life</a>, which would have been futile and worsened the quality of their end-of-life care.</p>
<h2>How prognostic awareness is measured</h2>
<p>Measuring prognostic awareness in patients is challenging because their responses may reflect their hopes rather than their true beliefs. In a <a href="https://doi.org/10.1093/jnci/djad267">recent publication in the <em>Journal of the National Cancer Institute</em></a>, our research team synthesized data from 52 studies measuring prognostic awareness in patients with advanced cancer.</p>
<p>In the majority of studies, prognostic awareness was conceptualized as a binary entity: patients were asked if their cancer was curable, and their responses were coded as either accurate prognostic awareness (patients knew their cancer was incurable and responded that it was incurable) or inaccurate prognostic awareness (they thought it was curable and responded that it was curable).</p>
<p>A few studies included in our review improved upon the binary conceptualization by incorporating hope in the assessment of prognostic awareness.</p>
<p>These studies asked patients about their belief and their doctor’s belief about prognosis and found that about a third of patients will hold onto hope for a cure (responding that they believe their cancer is curable), even when acknowledging that their doctors were treating them with palliative intent. This discordance was attributed to poor coping.</p>
<h2>The role of hope</h2>
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<img alt="Doctor holds patient's arm with IV" src="https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Not all cancer treatments are intended to cure the disease.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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<p>Hope is a <a href="https://doi.org/10.1016/j.ejca.2008.02.031">recognized coping strategy</a> in patients with cancer. However, “false” hope may have detrimental effects. Patients may refuse to believe their prognosis and demand aggressive treatments that may cause more harm than benefit.</p>
<p>In the context of advanced cancer, the relationship between hope and hopelessness is balanced by acceptance, which can <a href="https://doi.org/10.1177/1049909112445371">re-direct hope to new goals beyond cure</a>, such as hope for connection with others and enjoyment of daily pleasures. </p>
<p>Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies focusing on what can be done (such as control of symptoms) and exploring realistic goals such as dignity and intimacy. Family and spirituality play an important role in supporting patient hope.</p>
<h2>Incorporating patient hope into prognostic awareness</h2>
<p>We improved upon the binary conceptualization of measuring prognostic awareness by incorporating patient hope, creating a <a href="https://doi.org/10.1093/jnci/djad267">trinary concept</a>: patients who are aware and accepting of their prognosis; aware and not accepting; or truly unaware.</p>
<p>We propose that patients who are aware and accepting should be offered psychological supports to address any negative effects on mood; those who are aware and not accepting should be offered adaptive coping strategies to support their evolving prognostic awareness; and those who are truly unaware will benefit from interventions such as decision-aids and communication training. Early palliative care consultation may be beneficial at each stage of prognostic awareness.</p>
<p>This trinary conceptualization may guide future research to improve our understanding of the impact of hope in the setting of serious illness and help patients receive the right supports in their cancer journey.</p><img src="https://counter.theconversation.com/content/225430/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>Patients with incurable cancer want to be informed about their disease and its treatment, but must also maintain hope. This inner conflict can affect how they process information about their prognosis.Jean Mathews, Assistant Professor, Departments of Medicine and Oncology, Queen's University, OntarioMichael Brundage, Professor Emeritus of Oncology and Public Health Sciences, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2250532024-03-14T12:46:04Z2024-03-14T12:46:04ZHow for-profit nursing home regulators can use the powers they already have to fix growing problems with poor-quality care<figure><img src="https://images.theconversation.com/files/579738/original/file-20240304-22-wj7pxu.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5760%2C3837&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Nursing homes care for more than a million people in the U.S.</span> <span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/NursingHomeHigh/7c838b5ffe0a4558bde70f78d42f123e/photo">AP Photo/Richard Drew</a></span></figcaption></figure><p>Governments at both state and federal levels have <a href="https://doi.org/10.1093/ppar/prad001">yet to fully wield their authority</a> to fight poor-quality care at for-profit nursing homes nationwide, leaving the pressing need for elder care accountability unmet.</p>
<p>Medicare has the <a href="https://doi.org/10.1093/ppar/prad001">power to improve financial accountability</a> at nursing facilities by capping profits while requiring that a percentage of revenues be spent on direct care expenditures. Already, four states – New Jersey, New York, Massachusetts and Pennsylvania – <a href="https://doi.org/10.1093/ppar/prad001">have shown this can be done</a>, passing laws requiring minimum percentages of expenditures on direct care while limiting profits.</p>
<p>I am a <a href="https://profiles.ucsf.edu/charlene.harrington">behavioral scientist</a> at the University of California, San Francisco who studies the economics of nursing homes and the implications for care. I am also the co-author of an <a href="https://theconversation.com/for-profit-nursing-homes-are-cutting-corners-on-safety-and-draining-resources-with-financial-shenanigans-especially-at-midsize-chains-that-dodge-public-scrutiny-225045">investigative piece in The Conversation</a> about for-profit nursing homes.</p>
<p>States also have the power to suspend and disqualify nursing home owners from the Medicaid program when they provide poor-quality care, commit fraud or harm residents. </p>
<p>For example, after the New Jersey comptroller <a href="https://www.cbsnews.com/newyork/news/princeton-care-center-abrupt-closure-law-violation/">concluded that the abrupt closure</a> of the Princeton Care Center nursing home in September 2023 jeopardized the health and safety of residents, the state took action. It <a href="https://nj.gov/comptroller/news/2024/20240116.shtml#:%7E:text=The%20Office%20of%20the%20State,other%20Medicaid%2Dfunded%20nursing%20homes.">moved in January 2024 to impose an eight-year ban</a> on the owners’ ability to receive Medicaid reimbursement at any nursing home and to require them to divest themselves from <a href="https://nj.gov/comptroller/news/2024/20240116.shtml#:%7E:text=The%20Office%20of%20the%20State,other%20Medicaid%2Dfunded%20nursing%20homes.">two other facilities they already ran</a>.</p>
<p>The federal government can also take aggressive actions to force the industry to shape up, even without new legislation. A 2023 <a href="https://scholarship.law.wm.edu/cgi/viewcontent.cgi?article=4001&context=wmlr">law review article</a> demonstrates that state and federal governments could use state licensure laws and federal nursing home certification requirements to prevent abuse. The article argues that governments could set clear nursing home ownership and operation criteria for individuals and companies, which can include experience, expertise, reputation, past performance and financial solvency standards.</p>
<p>Even federal prosecutors have largely unused powers to crack down on the industry. The Department of Justice <a href="https://www.justice.gov/opa/pr/department-justice-launches-national-nursing-home-initiative">has taken actions</a> against many nursing home owners and chains but rarely has moved to remove the certification of facilities despite having the authority to do so. Instead, nursing homes subject to legal action by the department generally are placed under what is known as a corporate integrity agreement and assigned a monitor to oversee regulatory compliance.</p>
<p>For example, <a href="https://oig.hhs.gov/fraud/cia/agreements/Saber_Healthcare_Holdings_LLC_et_al_03312020.pdf">Saber Healthcare Holdings</a>, which owned <a href="https://data.cms.gov/quality-of-care/nursing-home-affiliated-entity-performance-measures/data">126 nursing homes</a> in 2024, was placed under a <a href="https://oig.hhs.gov/faqs/corporate-integrity-agreement-faq/">corporate integrity agreement</a> in 2021. </p>
<p>The question remains: Why haven’t governments fully flexed their existing regulatory muscles to enforce vital reforms in nursing homes? With the welfare of vulnerable residents at stake, the urgency for decisive action has never been clearer.</p>
<p><em><a href="https://theconversation.com/for-profit-nursing-homes-are-cutting-corners-on-safety-and-draining-resources-with-financial-shenanigans-especially-at-midsize-chains-that-dodge-public-scrutiny-225045">Read The Conversation’s investigation</a> to learn more about the nation’s for-profit nursing homes and how they’re cutting corners on safety.</em></p><img src="https://counter.theconversation.com/content/225053/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Harrington is a advisory board member of the nonprofit Veteran's Health Policy Institute and a board member of the nonprofit Center for Health Information and Policy. Harrington served as an expert witness on nursing home litigation cases by residents against facilities owned or operated by Brius and Shlomo Rechnitz in the past and in 2022. She also served as an expert witness in a case against The Citadel Salisbury in North Carolina in 2021.
</span></em></p>Governments can do more to protect patients at for-profit nursing homes. A behavioral scientist who studies nursing homes weighs in.Charlene Harrington, Professor Emeritus of Social Behavioral Sciences, University of California, San FranciscoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2173742023-11-30T01:09:07Z2023-11-30T01:09:07ZArtificial intelligence is already in our hospitals. 5 questions people want answered<figure><img src="https://images.theconversation.com/files/560122/original/file-20231117-23-mms70g.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1000%2C666&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/female-face-matrix-digital-numbers-artifical-2268966863">Shutterstock</a></span></figcaption></figure><p>Artificial intelligence (AI) is already being used in health care. AI can look for patterns in <a href="https://journal.achsm.org.au/index.php/achsm/article/view/861">medical images</a> to help diagnose disease. It can help predict who in a hospital ward might <a href="https://www.jmir.org/2021/9/e28209">deteriorate</a>. It can <a href="https://elicit.com/">rapidly summarise</a> medical research papers to help doctors stay up-to-date with the latest evidence.</p>
<p>These are examples of AI making <a href="https://theconversation.com/artificial-intelligence-wont-replace-a-doctor-any-time-soon-but-it-can-help-with-diagnosis-83353">or shaping</a> decisions health professionals previously made. More applications are being developed.</p>
<p>But what do consumers think of using AI in health care? And how should their answers shape how it’s used in the future?</p>
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<em>
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Read more:
<a href="https://theconversation.com/ai-is-already-being-used-in-healthcare-but-not-all-of-it-is-medical-grade-207912">AI is already being used in healthcare. But not all of it is 'medical grade'</a>
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<h2>What do consumers think?</h2>
<p>AI systems are trained to look for patterns in large amounts of data. Based on these patterns, AI systems can make recommendations, suggest diagnoses, or initiate actions. They can potentially continually learn, becoming better at tasks over time.</p>
<p>If we draw together <a href="https://www.sciencedirect.com/science/article/pii/S0277953623007141#appsec1">international</a> evidence, including <a href="https://www.uow.edu.au/the-arts-social-sciences-humanities/research/acheev/artificial-intelligence-in-health/">our own</a> <a href="https://journal.achsm.org.au/index.php/achsm/article/view/861">and that</a> <a href="https://humanfactors.jmir.org/2022/3/e34514/authors">of others</a>, it seems most consumers accept the potential value of AI in health care. </p>
<p>This value could include, for example, increasing the <a href="https://www.jmir.org/2022/8/e37611/">accuracy of diagnoses</a> or improving <a href="https://mental.jmir.org/2019/11/e12942/">access to care</a>. At present, these are largely potential, rather than proven, benefits. </p>
<p>But consumers say their acceptance is conditional. They still have serious concerns.</p>
<p><strong>1. Does the AI work?</strong></p>
<p>A baseline expectation is AI tools should work well. Often, consumers say AI should be at least as good as a <a href="https://journal.achsm.org.au/index.php/achsm/article/view/861">human doctor</a> at the tasks it performs. They say we should not use AI if it will lead to more incorrect diagnoses or medical errors.</p>
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Read more:
<a href="https://theconversation.com/ai-chatbots-are-still-far-from-replacing-human-therapists-201084">AI chatbots are still far from replacing human therapists</a>
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<p><strong>2. Who’s responsible if AI gets it wrong?</strong></p>
<p>Consumers also worry that if AI systems generate decisions – such as diagnoses or treatment plans – without human input, it may be unclear who is responsible for errors. So people often want clinicians to remain responsible for the final decisions, and for <a href="https://www.nature.com/articles/s41746-021-00509-1">protecting patients</a> from harms.</p>
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Read more:
<a href="https://theconversation.com/who-will-write-the-rules-for-ai-how-nations-are-racing-to-regulate-artificial-intelligence-216900">Who will write the rules for AI? How nations are racing to regulate artificial intelligence</a>
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<p><strong>3. Will AI make health care less fair?</strong></p>
<p>If health services are <a href="https://theconversation.com/ms-dhu-coronial-findings-show-importance-of-teaching-doctors-and-nurses-about-unconscious-bias-60319">already discriminatory</a>, AI systems can learn these patterns from data and <a href="https://www.science.org/doi/10.1126/science.aax2342">repeat or worsen</a> the discrimination. So AI used in health care can make health inequities worse. In our studies consumers said this <a href="https://journals.sagepub.com/doi/pdf/10.1177/20552076231191057">is not OK</a>.</p>
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<p><strong>4. Will AI dehumanise health care?</strong></p>
<p>Consumers are concerned AI will take the “human” elements out of health care, consistently saying AI tools should <a href="https://journals.sagepub.com/doi/full/10.1177/20552076221116772">support rather than replace</a> doctors. Often, this is because AI is perceived to lack important human traits, <a href="https://journals.sagepub.com/doi/full/10.1177/2055207619871808">such as empathy</a>. Consumers say the communication skills, care and touch of a health professional are especially important when feeling vulnerable.</p>
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Read more:
<a href="https://theconversation.com/chatbots-for-medical-advice-three-ways-to-avoid-misleading-information-213266">Chatbots for medical advice: three ways to avoid misleading information</a>
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<p><strong>5. Will AI de-skill our health workers?</strong></p>
<p>Consumers value human clinicians and their expertise. In our <a href="https://journals.sagepub.com/doi/full/10.1177/20552076231191057">research with women</a> about AI in breast screening, women were concerned about the potential effect on radiologists’ skills and expertise. Women saw this expertise as a precious shared resource: too much dependence on AI tools, and this resource might be lost.</p>
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<h2>Consumers and communities need a say</h2>
<p>The Australian health-care system cannot focus only on the technical elements of AI tools. Social and ethical considerations, including high-quality engagement with consumers and communities, are essential to shape AI use in health care.</p>
<p>Communities need opportunities to develop <a href="https://theconversation.com/chatbots-for-medical-advice-three-ways-to-avoid-misleading-information-213266">digital health literacy</a>: <a href="https://www.goodthingsfoundation.org.au/the-digital-divide/digital-health/">digital skills</a> to access reliable, trustworthy health information, services and resources. </p>
<p>Respectful engagement with Aboriginal and Torres Strait Islander communities must be central. This includes upholding Indigenous data sovereignty, which the Australian Institute of Aboriginal and Torres Strait Islander Studies <a href="https://aiatsis.gov.au/publication/116530">describes as</a>:</p>
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<p>the right of Indigenous peoples to govern the collection, ownership and application of data about Indigenous communities, peoples, lands, and resources.</p>
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<p>This includes any use of data to create AI. </p>
<p>This critically important consumer and community engagement needs to take place before managers design (more) AI into health systems, before <a href="https://theconversation.com/who-will-write-the-rules-for-ai-how-nations-are-racing-to-regulate-artificial-intelligence-216900">regulators</a> create guidance for how AI should and shouldn’t be used, and before clinicians consider buying a new AI tool for their practice.</p>
<p>We’re making some progress. Earlier this year, we ran a <a href="https://www.uow.edu.au/the-arts-social-sciences-humanities/research/acheev/artificial-intelligence-in-health/">citizens’ jury on AI in health care</a>. We supported 30 diverse Australians, from every state and territory, to spend three weeks learning about AI in health care, and developing recommendations for policymakers.</p>
<p>Their recommendations, which will be published in an upcoming issue of the Medical Journal of Australia, have informed a recently released <a href="https://aihealthalliance.org/">national roadmap</a> for using AI in health care.</p>
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Read more:
<a href="https://theconversation.com/worried-about-ai-you-might-have-ai-nxiety-heres-how-to-cope-205874">Worried about AI? You might have AI-nxiety – here's how to cope</a>
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<h2>That’s not all</h2>
<p>Health professionals also need to be upskilled and supported to use AI in health care. They need to learn to be critical users of digital health tools, including understanding their pros and cons.</p>
<p>Our <a href="https://pubmed.ncbi.nlm.nih.gov/37071804/">analysis</a> of safety events reported to the Food and Drug Administration shows the most serious harms reported to the US regulator came not from a faulty device, but from the way consumers and clinicians used the device.</p>
<p>We also need to consider when health professionals should tell patients an AI tool is being used in their care, and when health workers should seek informed consent for that use.</p>
<p>Lastly, people involved in every stage of developing and using AI need to get accustomed to asking themselves: do consumers and communities agree this is a justified use of AI? </p>
<p>Only then will we have the AI-enabled health-care system consumers actually want.</p><img src="https://counter.theconversation.com/content/217374/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Stacy Carter receives funding from National Health and Medical Research Council, National Breast Cancer Foundation, Medical Research Futures Fund. </span></em></p><p class="fine-print"><em><span>Emma Frost receives funding from the Australian Government Research Training Program and the National Health and Medical Research Council.</span></em></p><p class="fine-print"><em><span>Farah Magrabi receives funding from the National Health and Medical Research Council, the Digital Health CRC and Macquarie University. She is Co-Chair of the Australian Alliance for AI in Healthcare's Safety, Quality and Ethics Working Group. </span></em></p><p class="fine-print"><em><span>Yves Saint James Aquino receives funding from the National Health and Medical Research Council (CRE 2006-545 - WiserHealthcare). He is affiliated with Bellberry Limited, a not-for-profit organisation providing scientific and ethical review of human research projects.</span></em></p>Before AI becomes widespread in health care, we need to ask what matters to consumers.Stacy Carter, Professor and Director, Australian Centre for Health Engagement, Evidence and Values, University of WollongongEmma Frost, PhD candidate, Australian Centre for Health Engagement, Evidence and Values, University of WollongongFarah Magrabi, Professor of Biomedical and Health Informatics at the Australian Institute of Health Innovation, Macquarie UniversityYves Saint James Aquino, Research Fellow, Australian Centre for Health Engagement, Evidence and Values, University of WollongongLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2161892023-11-14T14:12:25Z2023-11-14T14:12:25ZHealth professionals need to collaborate. Changing how they’re taught helps build that skill<figure><img src="https://images.theconversation.com/files/557971/original/file-20231107-17-khqow.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">It's crucial that medical professionals learn to collaborate.</span> <span class="attribution"><span class="source">Katleho Seisa</span></span></figcaption></figure><p>When health professionals collaborate rather than operating in silos, everyone benefits – patients, families and the health system at large. This is a fact supported by ample <a href="https://www.mdpi.com/2227-9032/7/4/117">research</a> <a href="https://www.sciencedirect.com/science/article/abs/pii/S1939865416301175">evidence</a>. The professionals reap the benefits, too: staff satisfaction and retention are <a href="https://www.sciencedirect.com/science/article/abs/pii/S1939865416301175">improved</a> through collaboration.</p>
<p>But in the real world, health professionals and departments often slip into <a href="https://strategica-conference.ro/wp-content/uploads/2022/04/68.pdf">silo mentalities</a>. And silos in healthcare, as US cardiologist Laurence Sparling <a href="https://www.weforum.org/agenda/2020/11/healthcare-silos-are-bad-for-us-heres-the-cure/">writes</a>, are bad for healthcare. The “cure”, Sparling argues, is integrated healthcare with “cross-silo dialogue” – collaborative healthcare.</p>
<p>But collaboration is a skill that has to be taught. People don’t automatically know how to work in teams. Instead, they have to develop the competencies to do so. Where better to start than in the professional training they receive?</p>
<p>We are lecturers in the <a href="https://www.uwc.ac.za/study/all-areas-of-study/units/interprofessional-education-unit/overview">Interprofessional Education Unit</a> at the University of the Western Cape in South Africa. For two years, we tracked the development of students doing the first-year interprofessional theoretical module called Primary Health Care. </p>
<p>As we explain in <a href="https://pubmed.ncbi.nlm.nih.gov/36308973/">a recent paper</a>, we tweaked the material dimension (the physical and virtual spaces in which learning and teaching occurs) to help students develop some of the <a href="https://www.ipecollaborative.org/2021-2023-core-competencies-revision">core competencies needed for interprofessional work</a>. These include communication with patients, families, community members and health team members; as well as teamwork competencies with all their complexities and demands. </p>
<p>There were immediate and marked improvements in students’ results. We also saw that students became better at giving each other constructive feedback and working together when needed. These are important skills to harness as they work towards becoming health professionals.</p>
<h2>Changing things up</h2>
<p>Information is available to modern students with the flick of a finger on the screen. This means the curriculum needs to be constantly evaluated to develop an appropriate learning environment.</p>
<p>One model of education <a href="https://pubmed.ncbi.nlm.nih.gov/30870148/">shows</a> that learning environments in the health professions are made up of two parts. There’s the psychosocial dimension, itself made up of three components: the personal, social, and organisational. </p>
<p>The material dimension is the second part and was the major focus of our changes. Starting in 2019, we introduced a few substantial changes to the way we taught and evaluated students. (Not knowing, of course, that in 2020 these sorts of adaptations would become necessary in a pandemic.)</p>
<p>Firstly, we converted the course’s traditional classroom test into an online test. Secondly, we introduced changes to the blog in which students had to post responses to a lecture. Students had previously reported that the topics were too rigid and that they therefore simply regurgitated what lecturers had presented.</p>
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<p>
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Read more:
<a href="https://theconversation.com/health-professionals-work-in-teams-their-training-should-prepare-them-163586">Health professionals work in teams: their training should prepare them</a>
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</em>
</p>
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<p>Another change was to an assignment on how social issues are addressed by organisations in nearby communities. Usually, students had to visit those communities. But many had in the past expressed concern about the costs of travelling to communities – most relied on public transport – and their safety. They also struggled with the logistics of coordinating with team members from various departments. </p>
<p>So we instead invited community members into the classroom to share experiences and stories of their communities. Students were, of course, allowed and encouraged to pose questions to these community members. Students interacted with community members to gain insights into the local indigenous knowledge systems, which represent the unique knowledge passed down through generations within a society. This strengthened their use of polite language and clear communication in important interactions, both important for interprofessional communication.</p>
<h2>Marked improvements</h2>
<p>These innovations brought about immediate improvements in students’ results. At the end of 2019, following the changes from an in-classroom to an online test, the grade point average improved from 49.94% to 81.54%. While a more modest improvement, the average score for the blog went up by 4.53 percentage points. And finally, in the community assignment, the average grade point improved by nearly 12 percentage points.</p>
<p>A number of factors can be credited for these improvements. For instance, the use of <a href="https://books.google.co.za/books?hl=en&lr=&id=gVr0dVVLfeIC&oi=fnd&pg=PT7&dq=storytelling+as+a+learning+tool&ots=6Ql5_Qqpth&sig=35Y9FhA6NlOj1DyeW_WLxXGWLOk#v=onepage&q=storytelling%20as%20a%20learning%20tool&f=false">storytelling</a>, as in the meetings with community members, has long been thought to aid learning. </p>
<p>We received positive feedback from students. One said:</p>
<blockquote>
<p>(This) is a very interesting module because you get to meet other students doing different courses and learn more about their courses, our lecturer made it fun and interesting too.</p>
</blockquote>
<p>Another commented:</p>
<blockquote>
<p>The course was interesting and it showed how the inter-sectoral collaboration helps society and the health of many patients.</p>
</blockquote>
<h2>Applying our lessons</h2>
<p>Our advice to others lecturing in this field includes these points:</p>
<ul>
<li><p>Help students to get comfortable with online environments. Incorporate technology into the first-year curriculum. </p></li>
<li><p>To enhance teamwork, give students the chance to critically and productively confront and reflect on their perspectives from early on in a health professions education programme. </p></li>
</ul>
<p>Health professional educators must recognise the emergence of a new, digital paradigm in higher education. A comprehensive and integrated approach to education, research and community engagement is required as the healthcare industry transitions to an interprofessional model, pushing us to dismantle barriers and promote teamwork. Continually evaluating programmes to stay ahead of technological advancements helps prepare them for success.</p><img src="https://counter.theconversation.com/content/216189/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Gérard Charl Filies works for UWC. </span></em></p><p class="fine-print"><em><span>Luzaan Africa works for UWC</span></em></p>It’s all too common for health professionals and departments to slip into silo mentalities.Gérard Charl Filies, Senior Lecturer: Interprofessional Education Unit, University of the Western CapeLuzaan Africa, Lecturer in the Interprofessional Education Unit , University of the Western CapeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2149372023-10-18T19:34:26Z2023-10-18T19:34:26ZThe impact of not having a family doctor: Patients are worse off, and so is the health system<figure><img src="https://images.theconversation.com/files/554202/original/file-20231017-27-bh0m9p.jpg?ixlib=rb-1.1.0&rect=1023%2C335%2C4423%2C2998&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Fixing the family doctor shortage can save lives and money at the same time.</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/the-impact-of-not-having-a-family-doctor-patients-are-worse-off-and-so-is-the-health-system" width="100%" height="400"></iframe>
<p><a href="https://doi.org/10.1503/cmaj.1096049">About 6.5 million Canadians</a> — roughly one in six — do not have access to primary medical care.</p>
<p>It’s a problem that puts their health at greater risk and renders the <a href="http://dx.doi.org/10.1136/fmch-2023-002236">entire public health-care system</a> less efficient than it could be, both economically and in terms of the quality of care for everyone.</p>
<p>In other words, if we can fix the shortage of family physicians, we can save lives and money at the same time.</p>
<h2>Shortage of family physicians</h2>
<p>Many factors are contributing to our current shortage.</p>
<p>For one, Canada’s health system needs not only more family doctors, but also more nurses and other health-care professionals. However, it <a href="https://www.cma.ca/our-focus/workforce-planning">lacks the capacity to collect and analyze data that’s required for integrated and proactive health human-resource planning</a>.</p>
<figure class="align-center ">
<img alt="A woman with gray hair in a white coat and stethoscope listening to a person with their back to the camera" src="https://images.theconversation.com/files/554203/original/file-20231017-18-qqvxjh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/554203/original/file-20231017-18-qqvxjh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=457&fit=crop&dpr=1 600w, https://images.theconversation.com/files/554203/original/file-20231017-18-qqvxjh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=457&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/554203/original/file-20231017-18-qqvxjh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=457&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/554203/original/file-20231017-18-qqvxjh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=574&fit=crop&dpr=1 754w, https://images.theconversation.com/files/554203/original/file-20231017-18-qqvxjh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=574&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/554203/original/file-20231017-18-qqvxjh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=574&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The family medicine workforce is aging: Nearly one in six family doctors in Canada is 65 or older and nearing retirement.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>The increasing complexity and responsibility of family medicine, including a much greater <a href="https://www.cma.ca/news/addressing-physicians-administrative-burden-invisible-crisis-family-medicine">administrative burden</a>, has also made careers in family medicine less attractive. In 2015, 38 per cent of graduating medical students chose a career in family medicine. By 2022, <a href="https://www.cbc.ca/news/canada/ottawa/fewer-medical-students-are-pursuing-family-practices-and-these-doctors-are-worried-1.6516261">that number had dropped to 30 per cent</a>.</p>
<p>We are also losing practising family physicians. The rate of retirement <a href="https://www.cbc.ca/news/canada/toronto/ont-family-physicians-1.6596653">increased through the pandemic</a>. (Many doctors lost income during shutdowns but were still responsible for lease and staff costs.) The current family medicine workforce is also aging: <a href="https://www.theglobeandmail.com/canada/article-family-doctors-retiring/">Nearly one in six family doctors in Canada is 65 or older and nearing retirement</a>.</p>
<h2>Family doctors and health care</h2>
<p><a href="https://www.cfp.ca/content/69/4/269.long#ref-27">Research has shown</a> that patients who have a regular general-practitioner relationship for more than 15 years need about 30 per cent less after-hours care or hospital admissions and experience approximately 25 per cent less mortality compared to those who had a regular general practitioner for just one year.</p>
<p>Having access to family medicine provides four ingredients essential to good care: continuity, access, comprehensiveness and co-ordination.</p>
<p>While other specializations concentrate on narrower aspects of medicine, family physicians specialize in comprehensive medicine, and engage with patients directly over time. Family doctors know how to manage a huge range of symptoms and conditions across the span of a lifetime. </p>
<p>In fact, <a href="https://doi.org/10.1016/j.hjdsi.2015.02.002">a recent study</a> in the United States rated family medicine as the most complex of all medical specialties, requiring the highest degree of judgement and integrated knowledge.</p>
<figure class="align-center ">
<img alt="A doctor seen from behind with a woman and a child" src="https://images.theconversation.com/files/553750/original/file-20231013-23-5y4omv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/553750/original/file-20231013-23-5y4omv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/553750/original/file-20231013-23-5y4omv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/553750/original/file-20231013-23-5y4omv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/553750/original/file-20231013-23-5y4omv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/553750/original/file-20231013-23-5y4omv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/553750/original/file-20231013-23-5y4omv.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">Having access to family medicine provides four ingredients essential to good care: continuity, access, comprehensiveness and co-ordination.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>The work, while challenging, is valuable and <a href="https://doi.org/10.1503/cmaj.180186">makes the rest of the health-care system more efficient</a>.</p>
<p>Having a person or a team get to know your story over time is incredibly powerful. When I see patients I’ve known for a long time, we can get a lot done quickly. They tell me what’s worrying them, and together we can decide quickly if a familiar issue calls simply for assurance and encouragement, or whether something has changed and needs addressing.</p>
<p>We make these decisions based on symptoms and past medical history — factoring in elements such as stress, family situations, grief and expectations for health. Because patients know and trust me, I can tell them, “I think XYZ is going on, but if you see these symptoms or changes in the next four weeks, I want to hear about it.”</p>
<p>That trust provides the opportunity to reassure and the chance to separate something benign from something worrisome, which in turn offers incredible efficiency back to the system. Family physicians aren’t sending folks for long lists of <a href="https://doi.org/10.3122/jabfm.2011.03.100170">unnecessary investigations</a>, because we know our patients’ stories.</p>
<h2>Benefits for patients and the health system</h2>
<p>There is a belief in some circles that if we only shared one <a href="https://doi.org/10.1503/cmaj.181647">common medical record</a>, every patient’s story would become available to all, resolving the issue of providing continuity.</p>
<p>But having one person or team look after a patient’s primary care and keeping a good history is not the same as having many people looking after that patient and adding to that record in many settings and situations.</p>
<p>Patients without a family doctor must try to access the health-care system by going to an ER or walk-in clinic. That often means <a href="https://www.cihi.ca/en/nacrs-emergency-department-visits-and-lengths-of-stay">a long wait</a>, only being able to address one issue at a time and possibly that the treatment they will be offered will resolve the immediate concern, but <a href="https://doi.org/10.1002/hpm.2632">won’t necessarily address the root of the issue</a>.</p>
<p>Further, those patients likely miss the chance to tell a chapter of their health story to someone who will remember if a similar issue comes up in the future.</p>
<p>Family doctors are also experts in prevention. They know how to look for things that could become problematic down the line. Lack of access to family medicine puts people at greater risk of having diseases such as cancer <a href="https://doi.org/10.1038/nrclinonc.2013.212">go much longer without being diagnosed or treated</a>. </p>
<p>Finally, as anyone with a loved one dependent on help for the essential activities of daily life can tell you, <a href="https://www.hqontario.ca/Portals/0/documents/system-performance/connecting-the-dots-report-en.pdf">co-ordinating care</a> is a critical and effective function of family medicine.</p>
<p>Whether it’s referring patients to resources or specialized help or orchestrating something as personal and impactful as the choice to die at home, family doctors are experts in translating your health story into plans to assemble and oversee your broader health-care team.</p>
<p>The return on investment in a strong primary care foundation is an <a href="https://doi.org/10.1503/cmaj.109-5729">increase in the average lifespan</a>, a greater sense of health overall and a <a href="https://doi.org/10.1111/j.1468-0009.2005.00409.x">reduction in costs</a> in all other parts of the system.</p>
<p>The lack of family physicians is a problem worth solving.</p><img src="https://counter.theconversation.com/content/214937/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Cathy Risdon does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The shortage of family doctors affects not only patients, but the entire health-care system. A strong primary care foundation increases average lifespan, improves overall health and reduces costs.Cathy Risdon, Professor and Chair, Family Medicine, McMaster, McMaster UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2104252023-09-13T18:40:20Z2023-09-13T18:40:20ZSolving Canada’s shortage of health professionals means training more of them, and patients have a key role in their education<figure><img src="https://images.theconversation.com/files/547848/original/file-20230912-7671-ly0s9f.jpg?ixlib=rb-1.1.0&rect=131%2C186%2C5013%2C3523&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A fundamental component for training health-care professionals is interacting with patients and families.</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/solving-canadas-shortage-of-health-professionals-means-training-more-of-them-and-patients-have-a-key-role-in-their-education" width="100%" height="400"></iframe>
<p><a href="https://www.ctvnews.ca/health/canadians-worried-about-the-state-of-provincial-health-systems-poll-1.6248713">Eighty-six per cent of Canadians</a> are worried about their health-care systems. Health-care professional organizations like the <a href="https://www.cma.ca/about-us/what-we-do/press-room/health-care-groups-call-premiers-make-canadas-collapsing-health-system-their-top-priority#:%7E:text=%22Canada%27s%20health%20care%20system%20is%20in%20crisis.%20While,only%20added%20fuel%20to%20an%20already%20raging%20fire.">Canadian Medical Association</a> and the <a href="https://www.casn.ca/2022/11/casn-releases-nurses-education-in-canada-statistics-report-2020-2021/">Canadian Association of Schools of Nursing</a> are sounding the alarm about the severe shortage of health-care providers. This shortage is contributing to Canada’s health-care crisis. </p>
<p>Canada urgently needs more trained health-care professionals. While they may not know it, everyone in Canada can play a key role in educating future health-care providers. </p>
<p>Each encounter that health-care students have with patients, families and communities helps them develop real-world understanding of the various needs of the diverse Canadian population.</p>
<h2>Canada’s shortage of health-care workers</h2>
<p>The House of Commons Standing Committee on Health’s March 2023 report titled <a href="https://www.ourcommons.ca/Content/Committee/441/HESA/Reports/RP12260300/hesarp10/hesarp10-e.pdf">Addressing Canada’s Health Workforce Crisis</a> explored and substantiated this shortage of health-care professionals. This report primarily focused on physicians and nurses. Canada anticipates a shortfall of <a href="https://www.canada.ca/en/employment-social-development/news/2023/06/canada-is-addressing-current-and-emerging-labour-demands-in-health-care.html">78,000 physicians</a> by 2031, and <a href="https://www.canadian-nurse.com/blogs/cn-content/2023/04/17/solutions-to-tackle-nursing-shortage#:%7E:text=A%202019%20analysis%20predicted%20a,care%20(OECD%2C%202022).">117,600 nurses</a> by 2030. </p>
<p>Other professions are also sounding the alarm of practitioner shortages, including <a href="https://www.ourcommons.ca/Content/Committee/441/HESA/Reports/RP12260300/hesarp10/hesarp10-e.pdf">dental professionals, medical laboratory specialists, occupational therapists</a> and <a href="https://www.longwoods.com/audio-video/longwoods-breakfast-series/Youtube/9588">pharmacists</a>. </p>
<p>In addition to these predictions, there are significant concerns about keeping the care providers we currently have. A 2022 report from the <a href="https://nursesunions.ca/wp-content/uploads/2022/11/CHWN-CFNU-Report_-Sustaining-Nursing-in-Canada2022_web.pdf">Canadian Federation of Nurses Unions</a> found that 94 per cent of nurse respondents showed signs of burnout, and over half wanted to leave their current job. Other health professions have raised similar concerns. </p>
<h2>Addressing the shortage</h2>
<p>There is no quick fix to these complex problems, and Canada is responding in a variety of ways. This includes recruiting <a href="https://www.canada.ca/en/employment-social-development/news/2022/12/government-of-canada-launches-call-for-proposals-to-help-internationally-educated-professionals-work-in-canadian-healthcare.html">internationally trained</a> practitioners, funding strategies to improve <a href="https://www.canada.ca/en/health-canada/news/2023/04/government-of-canada-announces-support-to-help-address-workforce-challenges-and-retention-in-nursing-field.html">retention</a> and increasing <a href="https://www.universityaffairs.ca/news/news-article/provincial-budget-round-up-2023-highlights-for-the-university-sector/">educational seats</a> to train more future health-care providers. </p>
<figure class="align-center ">
<img alt="A woman in scrubs shakes hands with a man using a wheelchair in front of two other people in scrubs" src="https://images.theconversation.com/files/547868/original/file-20230912-5779-i19k0y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/547868/original/file-20230912-5779-i19k0y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/547868/original/file-20230912-5779-i19k0y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/547868/original/file-20230912-5779-i19k0y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/547868/original/file-20230912-5779-i19k0y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/547868/original/file-20230912-5779-i19k0y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/547868/original/file-20230912-5779-i19k0y.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">Each encounter that health-care students have with patients, families and communities helps them develop real-world understanding of the various needs of the diverse Canadian population.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>These responses are being created from <a href="https://www.canada.ca/en/health-canada/news/2022/11/health-canada-announces-coalition-for-action-for-health-workers.html">federal</a>, provincial (such as <a href="https://novascotia.ca/news/release/?id=20221114001">Nova Scotia</a>) and local levels. However, these strategies are not quick fixes and efforts may not be successful. </p>
<p><a href="https://www.cbc.ca/news/health/financial-perks-doctor-recruitment-1.6548194">Retention efforts</a> have not been as effective as anticipated, as financial incentives do not appear to have the same influence they might have had in the past. International recruitment is fraught with <a href="https://theconversation.com/the-ethics-of-recruiting-international-health-care-workers-canadas-gains-could-mean-another-countrys-pain-208542">ethical concerns</a> and complex processes applicants need to work through in order to become licensed to practice.</p>
<h2>Education investments</h2>
<p>Significant provincial investments are being announced to create more seats in education programs for health-care professional students. The <a href="https://edmontonjournal.com/news/politics/alberta-to-expand-seats-in-health-care-education-with-200-million-over-three-years">Alberta government</a> is investing $72 million for 3,400 new seats in a variety of health-related training programs and $20 million for the creation of 120 new physician seats. </p>
<p><a href="https://globalnews.ca/news/9448757/additional-seats-saskatchewan-health-care-training-programs/">Saskatchewan</a> is adding 550 health-care provider education seats. <a href="https://news.umanitoba.ca/manitoba-government-announces-80-physician-training-seats-to-be-added/">Manitoba</a> announced an investment of $200 million for 2,000 health-care professionals, including 80 new physician seats and four <a href="https://news.gov.mb.ca/news/index.html?item=56297">respiratory therapy</a> students. </p>
<p><a href="https://www.universityaffairs.ca/news/news-article/provincial-budget-round-up-2023-highlights-for-the-university-sector/">Other provinces</a> are also investing in a variety of ways such as educational program grants to expand enrolment in Ontario, and student financial support in Prince Edward Island.</p>
<p>While increased training opportunities can increase the future workforce, having more students also requires additional resources and learning opportunities. Education for health-care professionals varies by the type of provider, and can range from certificate programs to graduate degrees. </p>
<h2>How Canadians can help</h2>
<p>We are a team of interdisciplinary researchers who teach health-care professionals in their foundational training. We know that despite significant differences in health-care education programs, one fundamental component for all learners is interacting with patients and families. </p>
<p>That means all Canadians play an essential part in educating future health-care providers. With more students enrolling, Canadians will have even more engagement with students in health-care settings.</p>
<p>Most health-care education programs include public interaction. Some public members purposefully engage. For example, some become guest speakers in classes, and share personal experiences with illness and health care. But more commonly, people engage with health-care professional students while looking after their health needs. </p>
<p>Canadians can anticipate interacting with students in common health-care spaces such as pharmacies, physiotherapy clinics, dental clinics, public health clinics, doctor’s offices, hospitals or outpatient clinics. But students may also be found in less expected places such as food banks, non-profit community organizations, schools and community settings. </p>
<p>Members of the public may feel less inclined to interact with students. This can be due to the perceived increased time it takes, worries about students’ knowledge or abilities, or because they might feel that they <a href="https://doi.org/10.1016/j.ijnurstu.2018.04.010">don’t have anything to contribute</a>. However, it is important for Canadians to know about the benefits of these interactions for both students and patients.</p>
<h2>What Canadians can teach health-care professional students</h2>
<p>Research has identified that student encounters with public patients and family members contributed to the development of their <a href="https://doi.org/10.1007/s10459-022-10137-3">communication</a>, <a href="https://doi.org/10.1080/0142159X.2019.1652731">compassion and empathy skills</a>. It also helped decrease stigma towards traditionally stigmatized groups and conditions, such as those with <a href="https://doi.org/10.1111/1440-1630.12205">mental illness</a>. </p>
<p>Interacting with the Canadian public also increased students’ ability to <a href="https://doi.org/10.1111/j.1365-2850.2011.01858.x">use appropriate language</a> and <a href="https://doi.org/10.1111/j.1365-2850.2012.01955.x">work with patients</a>. It enhanced their <a href="http://dx.doi.org/10.1136/bmjopen-2020-037217">self-confidence</a> and their motivation in caring for the public.</p>
<h2>How does this impact Canadians?</h2>
<p>While these interactions benefit student learning and will help contribute to a larger health workforce, they have also been found to benefit the public. </p>
<p>Research has found that student encounters can increase a patient’s <a href="https://doi.org/10.1111/inm.12021">sense of empowerment</a> to participate in their own health with shared decision-making. Additionally, there is a potential for the improvement of overall <a href="https://doi.org/10.1007/s10459-022-10137-3">health outcomes</a> of patients. One study found patients were more knowledgeable and better able to <a href="https://doi.org/10.1016/j.japh.2021.08.014">manage their own medications</a> after engaging with student practitioners.</p>
<p>The shortage of health professionals in Canada, and globally, is of sincere concern. To address this, it is essential that we increase the number of professionals being trained. This requires the Canadian public’s assistance as they encounter more health-care professional students. </p>
<p>Investing your time in interacting with students has benefits for the students and for you. Canadians can all play a part in building the future health workforce we desperately need. As health-care professionals, we thank you for the important role you play in educating and shaping our students and future health workforce. </p>
<p><em>Bryn Keogh co-authored this article. She is an undergraduate student at the University of Calgary in communication and media studies and received an Alberta Innovates Summer Research Studentship.</em></p><img src="https://counter.theconversation.com/content/210425/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>Each encounter that health-care students have with patients and families helps them understand real-world patient needs. That means all Canadians have a role in educating future health-care providers.Lisa McKendrick Calder, Associate Professor, Nursing, MacEwan UniversityEleftheria Laios, Educational Developer, Queen's University, OntarioKerry Wilbur, Associate Professor and Executive Director, Entry-to-Practice Education, Faculty of Pharmaceutical Sciences, University of British ColumbiaLorelli Nowell, Associate Professor and Assistant Dean of Graduate Programs, Faculty of Nursing, University of CalgaryWhitney Lucas Molitor, Associate Professor and Program Director, Occupational Therapy Department, University of South DakotaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2073972023-07-11T12:28:48Z2023-07-11T12:28:48ZThe 21st Century Cures Act requires that patients receive medical results immediately – and new research shows patients prefer it that way<figure><img src="https://images.theconversation.com/files/534479/original/file-20230628-36173-rt3t82.jpg?ixlib=rb-1.1.0&rect=35%2C23%2C7904%2C5273&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The 21st Century Cures Act requires that test results be released to patients even before their health care provider has reviewed them. </span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/afro-american-healthcare-worker-discussing-medical-royalty-free-image/1386035203?phrase=patients+talking+to+doctor&adppopup=true">Natalia Gdovskaia/Moment via Getty Images</a></span></figcaption></figure><p><em>The <a href="https://theconversation.com/us/topics/research-brief-83231">Research Brief</a> is a short take about interesting academic work.</em> </p>
<h2>The big idea</h2>
<p>Patients overwhelmingly prefer to see their medical test results online immediately, even if that means viewing results before discussing them with a health care professional. These are the <a href="http://doi.org/10.1001/jamanetworkopen.2023.3572">key findings</a> from our team’s recent study, published in JAMA Network Open. Importantly, this preference remains true for patients who received results with abnormal or potentially concerning findings.</p>
<p>We carried out this study to understand how patients are affected by new legislation to prevent <a href="https://www.healthit.gov/topic/information-blocking">information blocking</a> and provide patients complete access to all of their electronic health information. The <a href="https://www.fda.gov/regulatory-information/selected-amendments-fdc-act/21st-century-cures-act">21st Century Cures Act</a> became law in 2016 to improve access, exchange and use of electronic health information. The information-blocking exceptions, which went into effect in April 2021, codified provisions that required <a href="https://www.opennotes.org/onc-federal-rule/">nearly all electronic health information</a> – including medical test results – be made immediately available to patients once the results are ready. </p>
<p>Many <a href="https://doi.org/10.1016/j.amjsurg.2021.12.002">clinicians have worried</a> that this new access may cause undue emotional distress. Some patients have reported receiving news of cancer or other critical diagnoses at home <a href="https://www.nytimes.com/2022/10/03/well/live/medical-test-results-cures-act.html">without immediate access to their clinician</a>. For some, receiving bad news from a health care professional rather than in an online report may help to avoid misinterpretations and alleviate distress. </p>
<p>Others have argued that receiving bad news itself is worrying, regardless of how it is delivered. Many patients may prefer to receive bad news in the comfort of their own home, surrounded by friends and family, and with time to <a href="https://www.theguardian.com/commentisfree/2023/apr/03/journalist-henry-mcdonald-facts-online-medical-records">do their own research and prepare questions</a> to inform conversations with their clinician.</p>
<p>We surveyed more than 8,000 patients, from four medical centers, who received test results through online patient portals between April 2021 and April 2022. We asked participants about the types of tests they received, their reaction to the results, the effect of the result on their health and well-being and preferences for the release of future results.</p>
<p>We found that a staggering 96% of patients wished to continue receiving their medical results online as soon as the results become available. Most patients – 92.5% – who reviewed their results online reported that seeing the result made them feel the same or less worried about their health. About 7.5% of patients reported feeling more worried after reviewing their result, especially when the findings were abnormal. However, over 95% of patients who received results with abnormal findings still wished to continue to receive results online – even if their clinician had not yet seen the result.</p>
<p>This research builds upon our prior work from 2021, which <a href="http://doi.org/10.1001/jamanetworkopen.2021.29553">found a fourfold increase</a> in the number of sensitive results reviewed first by patients after they were released. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/2CQucXKLbA8?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The 21st Century Cures Act transforms how patients and clinicians communicate and share information to improve health care.</span></figcaption>
</figure>
<h2>Why it matters</h2>
<p>A major goal of the 21st Century Cures Act was to improve how health information is shared and exchanged between health care organizations, patients and caregivers. The law does not specify how electronic information should be released to the patient. Health care organizations have widely chosen to comply with the Cures Act by releasing all information through patient portals.</p>
<p>Improved sharing of information benefits both patients and clinicians. Full access to personal health information allows patients to better manage their health care, remain informed about key treatment decisions and have more meaningful discussions with their clinicians.</p>
<p>Before the Cures Act, individual health care organizations could choose which information was made available online to the patient. Many organizations already <a href="https://doi.org/10.1093/jamiaopen/ooz039">shared results from common medical tests</a>. Health systems often delayed results that might cause distress, such as a new cancer diagnosis or an HIV test result, to give clinicians time to review and discuss the result with patients. Some organizations chose to withhold these sensitive test results from the patient portal altogether.</p>
<h2>What’s next</h2>
<p>Patient preferences around test results are highly complex and nuanced, especially when those results are sensitive ones. </p>
<p>One way that clinicians might prepare patients is to do pre-counseling or provide guidance at the time of ordering a test. Helping patients to understand the reason for the test, the possible results and steps for professional follow-up may help to anticipate and alleviate concerns before receiving a test result. </p>
<p>With the 21st Century Cures Act, the medical field is moving away from the paternalistic view that clinicians know best in favor of embracing empowered patients who take charge of their own care.</p><img src="https://counter.theconversation.com/content/207397/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The law requires medical test results be made available to patients even before a clinician has reviewed them.Bryan Steitz, Instructor in Biomedical Informatics, Vanderbilt UniversityCT Lin, Professor of Medicine, University of Colorado Anschutz Medical CampusLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2052782023-05-17T18:04:19Z2023-05-17T18:04:19ZMAID’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 LethbridgeJulia Brassolotto, Associate Professor, Public Health and Alberta Innovates Research Chair, University of LethbridgeMonique Sedgwick, Associate Professor of Nursing, University of LethbridgeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2048962023-05-16T20:42:11Z2023-05-16T20:42:11ZNew research discoveries are more likely to be put to use in pediatricians’ offices if patients and their caregivers get involved<figure><img src="https://images.theconversation.com/files/526563/original/file-20230516-19-vo0he0.jpg?ixlib=rb-1.1.0&rect=117%2C8%2C5405%2C3433&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Involving young patients and their parents or caregivers can help bring new research evidence into clinics.
</span> <span class="attribution"><span class="source">(Pexels/Christina Morillo)</span></span></figcaption></figure><p>Thousands of health research articles are published every year. With new evidence constantly being made available, you might assume health practices are also constantly evolving. </p>
<p>The reality is, however, <a href="https://doi.org/10.1055/s-0038-1637943">less than 15 per cent</a> of clinical research will ever make it into practice. Even when evidence is adopted into practice, this process can take <a href="https://doi.org/10.1258/jrsm.2011.110180">as long as 17 years</a>.</p>
<p>The field of children’s health is not exempt from this slow uptake. Considering that 17 years is nearly the length of an entire childhood, the speed with which evidence is adopted into practice must increase. </p>
<p>As a PhD candidate in clinical psychology, my research is focused on implementation science and pediatric pain, and specifically seeks to understand how to best support the uptake of evidence to improve children’s health and well-being.</p>
<p>Research evidence that impacts practice must be three things: </p>
<ul>
<li>relevant to those who may benefit from it, </li>
<li>tailored to the context where it will be used, and </li>
<li>easy to adopt into practice. </li>
</ul>
<p>How can these principles be addressed so evidence is better implemented? The group that holds the key to answering this question is young patients and their parents or caregivers. </p>
<h2>Patient partnerships</h2>
<figure class="align-center ">
<img alt="A woman with a child on her lap in a doctor's office, with the doctor holding a stethoscope to the child's chest" src="https://images.theconversation.com/files/526589/original/file-20230516-19-6pwo5m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526589/original/file-20230516-19-6pwo5m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526589/original/file-20230516-19-6pwo5m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526589/original/file-20230516-19-6pwo5m.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526589/original/file-20230516-19-6pwo5m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526589/original/file-20230516-19-6pwo5m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526589/original/file-20230516-19-6pwo5m.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">Engaging people with lived experience means integrating the perspectives of people who have not only lived with a given health condition, but have navigated the health-care system for treatment.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Traditionally seen as just the recipients of health care, young patients and their parents or caregivers bring with them something that cannot be taught in graduate programs or medical school: lived experience.</p>
<p>Engaging people with lived experience means integrating the perspectives of people who have not only lived with a given health condition, but have navigated the health-care system for treatment. These perspectives can be integrated into research in several ways, from developing research questions to sharing evidence. </p>
<p>When researchers work with patients and parents or caregivers to guide research and share evidence (called “patient partnership”), <a href="https://doi.org/10.1186/1472-6963-14-89">research shows positive outcomes</a> for the quality of evidence, and how easily it can be integrated into clinical practice.</p>
<p>By contributing their lived experience, patients and parents or caregivers can increase the impact of evidence. How does experience impact how evidence is used in practice, however? Engaging patients and caregivers can improve the way evidence is shared with potential users. These include understanding context, tailoring resources and increasing the efficiency of information sharing.</p>
<h2>Understanding context</h2>
<p>Context is the setting or situation in which research evidence can be used. </p>
<p>Context is important for understanding what information is needed, how it will be used and who will use it. It also ensures that relevant evidence is shared to support identified needs in the clinical environment. Patients and caregivers who have engaged with services within the health-care system can point out details in the environment that should be considered based on their experiences.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/fear-of-needles-5-simple-ways-to-ease-vaccination-pain-for-your-child-and-yourself-134328">Fear of needles: 5 simple ways to ease vaccination pain for your child (and yourself)</a>
</strong>
</em>
</p>
<hr>
<p>Consider an example that most parents or caregivers are familiar with: managing children’s needle pain during a vaccination. Young patients and their caregivers can offer insight into important elements of the physical environment. </p>
<p>Aspects of the environment include things like having a chair so the parent can use <a href="https://assets.aboutkidshealth.ca/AKHAssets/CARD_Comfort_Positions.pdf">comfort positioning</a>, and an electrical outlet and charger so parents can distract their child with a tablet, as well as other considerations such as accommodating breastfeeding. </p>
<p><a href="https://doi.org/10.2217/cer-2019-0175">Engaging patients</a> and caregivers helps anticipate needs in the environment when it comes time to put research evidence into practice.</p>
<h2>Tailoring resources</h2>
<figure class="align-center ">
<img alt="A child in a face mask pointing to a blue bandage on his arm" src="https://images.theconversation.com/files/526592/original/file-20230516-30763-qp70wy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526592/original/file-20230516-30763-qp70wy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526592/original/file-20230516-30763-qp70wy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526592/original/file-20230516-30763-qp70wy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526592/original/file-20230516-30763-qp70wy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526592/original/file-20230516-30763-qp70wy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526592/original/file-20230516-30763-qp70wy.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">Young patients and their caregivers can offer insight into important elements of the physical environment for things like managing pain during procedures such as vaccinations.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p><a href="https://doi.org/10.1080/24740527.2022.2045192">Research shows</a> that patients and caregivers, researchers and health professionals all experience challenges accessing evidence related to children’s health. Each of these groups also need information to be presented in a way they can understand it and put it to use. </p>
<p>Tailoring information ensures that it is relevant to, and understood by, the target audience.</p>
<p>Consider the needle pain management example again. Patients and caregivers can help shape the type of information they need to manage pain (in this example, pain management for needle pokes as well as post-vaccination soreness, etc.), and the best language to use when sharing information. For example, patients or their caregivers can review language to ensure it is understandable. </p>
<p>Engaging the people whom information will be tailored to is the <a href="https://doi.org/10.1186/1472-6963-14-89">most meaningful approach</a> to ensuring information is understandable.</p>
<h2>Increasing efficiency of information sharing</h2>
<p>Patients and caregivers are unlikely to read the academic journals that researchers and health professionals review. <a href="https://doi.org/10.1186/s12961-018-0282-4">For valuable insight</a> into where they are likely to seek information, and how best to present it, patients and parents or caregivers themselves are the best source. This can inform where resources are physically made available, the best way to present that information, and when it is best presented. </p>
<p>For example, are needle pain management resources best made available in waiting rooms? Online? In parenting groups? Is the best format to present the information a social media post? A brochure? A website? What time of day, or day or week, or season is it best to release that information? Can it be linked to medical checkups, the start of school or the holidays? </p>
<h2>Getting involved</h2>
<p>Opportunities are growing for patients and caregivers to take part in sharing knowledge and evidence about children’s health. </p>
<p>Groups for supporting patient-oriented research (SPOR) exist in many provinces. Patients and caregivers, researchers and health professionals can contact SPOR groups to learn more about patient engagement opportunities. There are also several knowledge-sharing organizations in Canada that support patient engagement in specific health areas (for example, <a href="https://kidsinpain.ca/">Solutions for Kids in Pain</a>).</p>
<p>Generating evidence is critical, but equally so is ensuring that evidence is used. Patients and caregivers play an essential role in making sure that evidence impacts practice.</p>
<p><em>This story is part of a series produced by <a href="https://www.kidsinpain.ca/">SKIP (Solutions for Kids in Pain)</a>, a national knowledge mobilization network whose mission is to improve children’s pain management by mobilizing evidence-based solutions through co-ordination and collaboration.</em></p><img src="https://counter.theconversation.com/content/204896/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nicole MacKenzie receives support for graduate funding from a Research Nova Scotia Scotia Scholars Award, a Maritime SPOR Support Unit doctoral award, and a Nova Scotia Graduate Scholarship doctoral award. She is also a Killam Scholar. She is also collaborating with Solutions for Kids in Pain (SKIP) as a research trainee.</span></em></p>Three factors that can speed up adoption of clinical research discoveries are context, tailoring resources and efficient knowledge sharing.Nicole MacKenzie, PhD Candidate in Clinical Psychology, Dalhousie UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2037442023-04-23T12:49:34Z2023-04-23T12:49:34ZPeople with long COVID continue to experience medical gaslighting more than 3 years into the pandemic<figure><img src="https://images.theconversation.com/files/520643/original/file-20230412-22-dvxov9.jpg?ixlib=rb-1.1.0&rect=35%2C107%2C5434%2C3826&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Long COVID patients face many barriers, the first of which is having their illness minimized or disregarded by others. </span> <span class="attribution"><span class="source">(Freepik)</span></span></figcaption></figure><p>It’s increasingly clear that the <a href="https://www.worldometers.info/coronavirus/country/canada/">SARS-CoV-2 virus is not going away</a> any time soon. And for some patients, their symptoms haven’t gone away either.</p>
<p>In January 2023, our team of researchers at the <a href="https://pipps.ca/">Pacific Institute on Pathogens, Pandemics and Society</a> published a <a href="https://pipps.cdn.prismic.io/pipps/bd160219-3281-4c5d-b8be-57c301e7f99b_Long+Covid+Brief+Feb+2023.pdf">research brief</a> about how people seek out information about long COVID. The brief was based on a scoping review, a type of study that assesses and summarizes available research. Our interdisciplinary team aims to understand the experiences of people with long COVID in order to identify opportunities to support health care and access to information.</p>
<h2>Lingering long COVID</h2>
<p>Long COVID (also called <a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/symptoms/post-covid-19-condition.html">Post COVID-19 condition</a>) is an illness that occurs after infection with COVID-19, lasting weeks to months, and even years. First coined by a <a href="https://doi.org/10.1016%2Fj.socscimed.2020.113426">patient on Twitter</a>, the term also represents a collective movement of people experiencing the long-term effects of COVID-19 and advocating for care. <a href="https://science.gc.ca/site/science/sites/default/files/attachments/2023/Post-Covid-Condition_Report-2022.pdf">Around 15 per cent</a> of adults who have had COVID still have symptoms after three months or more. </p>
<p>Long COVID affects systems <a href="https://doi.org/10.1016/j.socscimed.2021.114619">throughout the body</a>. However, symptom fluctuations and limited diagnostic tools make it challenging for health-care providers to diagnose, especially with <a href="https://doi.org/10.1038/s41579-022-00846-2">over 200 symptoms</a> that may present in patients. Perhaps because long COVID presents itself in many different ways, the illness has <a href="https://doi.org/10.1016/j.socscimed.2021.114619">been contested</a> across the medical field.</p>
<p>To identify opportunities to reduce barriers to long COVID care, our team has explored how patients and their caregivers access <a href="https://pipps.cdn.prismic.io/pipps/bd160219-3281-4c5d-b8be-57c301e7f99b_Long+Covid+Brief+Feb+2023.pdf">information about long COVID</a>. We have found that one of the most significant barriers faced by patients is <a href="https://doi.org/10.1177/20552076211059649">medical gaslighting</a> by the people they have turned to for help. </p>
<h2>Lack of validation leads to stigma</h2>
<p><a href="https://doi.org/10.1136/bmj.o1974">Medical gaslighting</a> occurs when health-care practitioners dismiss or falsely blame patients for their symptoms. While new information about long COVID has become more readily available, some patients continue to face gaslighting and feel that their symptoms are <a href="https://doi.org/10.1016%2Fj.ssmqr.2022.100177">treated less seriously</a> by some health-care professionals. </p>
<p>This dismissal can <a href="https://doi.org/10.1111/hex.13602">erode trust</a> in the health-care system and can also lead to <a href="https://doi.org/10.1111/hex.13518">stigma and shame</a>. </p>
<figure class="align-center ">
<img alt="A woman facing the camera looking frustrated with a doctor at his desk in the background looking at his computer screen" src="https://images.theconversation.com/files/521951/original/file-20230419-24-9y4aoh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/521951/original/file-20230419-24-9y4aoh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/521951/original/file-20230419-24-9y4aoh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/521951/original/file-20230419-24-9y4aoh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/521951/original/file-20230419-24-9y4aoh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/521951/original/file-20230419-24-9y4aoh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/521951/original/file-20230419-24-9y4aoh.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">Medical gaslighting occurs when health-care practitioners dismiss or falsely blame patients for their symptoms.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Preliminary findings from our ongoing study with long COVID patients indicate that, when medical practitioners do not validate a patient’s condition, this extends into community networks of family and friends who may also dismiss their symptoms, contributing to further stigmatization at home. </p>
<p>Medical gaslighting can present additional barriers to treatment, such as not being referred to specialists or long COVID clinics. This can, in turn, compound other symptoms such as fatigue, and <a href="https://doi.org/10.1192/bjo.2022.38">exacerbate the psychological symptoms of long COVID</a>, such as depression and anxiety. </p>
<p>Medical gaslighting isn’t new. It has been documented by patients with other chronic conditions, such as <a href="https://doi.org/10.5772/intechopen.107936">myalgic encephalomyelitis or chronic fatigue syndrome</a>. And while this is common for patients with <a href="https://doi.org/10.1001/amajethics.2021.512">non-visible illnesses</a>, medical gaslighting is more commonly experienced by <a href="https://doi.org/10.1111/1467-9566.13367">women and racialized people</a>. </p>
<p>Long COVID patients also note gender biases, as women with prolonged symptoms feel they are not believed. This is particularly worrisome, as studies have found that <a href="https://doi.org/10.1001/jama.2020.17709">women are disproportionately more likely to experience long COVID</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-isnt-anyone-talking-about-who-gets-long-covid-podcast-191659">Why isn’t anyone talking about *who* gets long COVID? — Podcast</a>
</strong>
</em>
</p>
<hr>
<h2>Where do we go from here?</h2>
<p>While long COVID information is constantly shifting, it’s clear that patients face many barriers, the first of which is having their illness minimized or disregarded by others. To ensure that patients have access to compassionate care, we suggest:</p>
<p><strong>1. Educating physicians on long COVID</strong></p>
<p>Because definitions of long COVID, and its presentation, vary widely, primary care physicians need support to recognize and acknowledge the condition. General practitioners (GPs) must also provide patients with information to help manage their symptoms. This requires actively listening to patients, documenting symptoms and <a href="https://doi.org/10.1136/bmj.m3489">paying close attention to symptoms that need further attention</a>. </p>
<p>Training physicians on the full range of symptoms and referring patients to available supports would reduce stigma and assist physicians by reducing their need to gather information themselves.</p>
<p><strong>2. Raise awareness about long COVID</strong></p>
<p>To increase awareness of long COVID and reduce stigma, public health and community-based organizations must work collaboratively. This may include a public awareness and information campaign about long COVID symptoms, and making support available. Doing so has the potential to foster community support for patients and improve the mental health of patients and their caregivers. </p>
<p><strong>3. Ensure information is accessible</strong></p>
<p>In many health systems, GPs are <a href="https://doi.org/10.1186/s12913-019-4419-0">gatekeepers to specialists</a> and are considered trusted information sources. However, without established diagnostic guidelines, patients are left to <a href="https://doi.org/10.2196/37984">self-advocate</a> and prove their condition exists. </p>
<p>Because of negative encounters with health-care professionals, patients turn to social media platforms, including long COVID <a href="https://doi.org/10.7861%2Fclinmed.2020-0962">online communities</a> on Facebook. While these platforms allow patients to validate experiences and discuss management strategies, patients should not rely only on social media given the <a href="https://doi.org/10.3389/fpubh.2022.937100">potential for misinformation</a>. As a result, it is crucial to ensure information about long COVID is multi-lingual and available in a wide range of formats such as videos, online media and physical printouts.</p>
<p>The <a href="https://science.gc.ca/site/science/en/office-chief-science-advisor/initiatives-covid-19/post-covid-19-condition-canada-what-we-know-what-we-dont-know-and-framework-action">recent recommendations of the Chief Science Advisor of Canada</a> to establish diagnostic criteria, care pathways and a research framework for long COVID are a positive development, but we know patients need support now. Improving long COVID education and awareness won’t resolve all of the issues faced by patients, but they’re foundational to compassionate and evidence-based care.</p><img src="https://counter.theconversation.com/content/203744/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors receive funding from the Pacific Institute on Pathogens, Pandemics and Society (PIPPS).</span></em></p><p class="fine-print"><em><span>Kaylee Byers receives funding from Michael Smith Health Research BC and the Provincial Health Services Authority's Post-COVID-19 Interdisciplinary Clinical Care Network. The Pacific Institute on Pathogens, Pandemics and Society (PIPPS) receives funding from the BC Ministry of Health. </span></em></p><p class="fine-print"><em><span>Kayli Jamieson receives funding from Michael Smith Health Research BC and the Provincial Health Services Authority's Post-COVID-19 Interdisciplinary Clinical Care Network. The Pacific Institute on Pathogens, Pandemics and Society (PIPPS) receives funding from the BC Ministry of Health.</span></em></p>People with long COVID report that their symptoms are dismissed or not treated seriously by health-care providers. This medical gaslighting not only prevents treatment but can cause stigma and shame.Simran Purewal, Research Associate, Health Sciences, Simon Fraser UniversityKaylee Byers, Regional Deputy Director, BC Node of the Canadian Wildlife Health Cooperative; Senior Scientist, Pacific Institute on Pathogens, Pandemics and Society, Simon Fraser UniversityKayli Jamieson, Master's Student in Communication, Research Assistant for Pacific Institute on Pathogens, Pandemics and Society, Simon Fraser UniversityNeda Zolfaghari, Project Coordinator, Pacific Institute on Pathogens, Pandemics and Society, and the Pandemics & Borders Project, Simon Fraser UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2004202023-02-27T21:26:52Z2023-02-27T21:26:52ZEmergency department crowding has gone beyond hallways onto ambulance ramps. Now there’s nowhere left to wait.<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/emergency-department-crowding-has-gone-beyond-hallways-onto-ambulance-ramps--now-there-s-nowhere-left-to-wait-" width="100%" height="400"></iframe>
<p>A hospital’s emergency department (ED) has long been considered the canary in the coal mine for the health-care system: when it’s congested, the whole hospital is congested. </p>
<p>Routine and prolonged ED congestion has since led to declarations that patients waiting in an ambulance outside the ED are the new <a href="https://theconversation.com/ambulance-ramping-is-a-signal-the-health-system-is-floundering-solutions-need-to-extend-beyond-eds-187270">canaries in the coal mine</a>. </p>
<p>But when ambulances waiting outside the ED become routine and prolonged, another new canary appears: patients at home waiting for an ambulance. They may represent the truest analogy for the canary in the coal mine because they are <a href="https://www.wsws.org/en/articles/2022/10/21/gebn-o21.html">literally dying</a> and are a clear indicator that the health-care system is congested at a dangerous level.</p>
<h2>Pinch points</h2>
<p>Delayed handovers of patients arriving by ambulance is a <a href="https://theconversation.com/bad-for-patients-bad-for-paramedics-ambulance-ramping-is-a-symptom-of-a-health-system-in-distress-169528">decades-old problem</a> challenging health-care systems around the world. In the United Kingdom, the National Health Service has made eliminating handover delays one of its three priorty reforms for pre-hospital urgent care in its 10-year <a href="https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf">Long Term Plan</a>. </p>
<p>In <a href="https://www.paramedicchiefs.ca/wp-content/uploads/2022/07/PCCStatementonOffloadDelaysJuly2022Final.pdf">Canada</a>, where health care is provided by provinces, <a href="https://www.mcmasterforum.org/docs/default-source/product-documents/rapid-responses/identifying-approaches-for-optimal-management-of-ambulance-to-hospital-offload-processes.pdf?sfvrsn=9d809fdb_7">British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Québec, New Brunswick and Nova Scotia</a> have all experienced challenges handing over patients in a timely manner. </p>
<p>Australia has <a href="https://theconversation.com/bad-for-patients-bad-for-paramedics-ambulance-ramping-is-a-symptom-of-a-health-system-in-distress-169528">likewise</a> seen long lineups of ambulances queueing at hospitals, and has committed to hiring thousands of paramedics in an effort to combat <a href="https://www.ama.com.au/articles/ama-ambulance-ramping-report-card">year-on-year increases</a> in patient handover times.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ambulance-ramping-is-a-signal-the-health-system-is-floundering-solutions-need-to-extend-beyond-eds-187270">Ambulance ramping is a signal the health system is floundering. Solutions need to extend beyond EDs</a>
</strong>
</em>
</p>
<hr>
<p>Beyond ambulance handovers, delays and congestion also occur at other areas: the ED, wards and long-term care are some of the pinch points common in health-care systems around the world. </p>
<p>As an industrial engineer researching and working in health-care patient flow, this raises the question: where’s the next pinch point? </p>
<h2>Code zero</h2>
<p>We know hospital congestion is routinely caused by <a href="https://doi.org/10.1186/s12245-020-00312-x">access block</a>, which occurs when patients are blocked from flowing through the system by a lack of downstream capacity. This is often rooted in an inability to discharge patients from the hospital, which is often due to lack of space in long-term care.</p>
<p>Naturally, this stalls the flow of patients, causing them to wait in ward beds to be discharged from the hospital, in ED hallways waiting for ward beds, in ambulances waiting for ED beds, and eventually at home waiting for an ambulance. </p>
<p>This last group represents a new pinch point. Although ambulances not meeting targeted response times is not new, it is a relatively new phenomenon that there are <em>no</em> ambulances available to respond to calls in a timely manner — a situation known as “code zero.”</p>
<p>This new pinch point however, is substantially different from the others. The patients affected have not yet been seen by health-care providers, are not within meters of health-care services, and their urgencies are not known. These patients are at home, in unknown duress, waiting. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/BDzhN14OFuA?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Acute care director of the National Health Service in the U.K. discusses ambulance delays, and a family tells how delays led to tragedy.</span></figcaption>
</figure>
<p>Patients waiting with an ambulance on the “ramp” (known as “ramping”) or in a hallway between the ED and the ward are known to be at <a href="https://www.theguardian.com/society/2023/jan/25/record-exposure-to-severe-harm-from-england-ambulance-delays">higher risk</a> for adverse outcomes. Patients with hospital stays prolonged by delay are likewise at <a href="https://www.england.nhs.uk/urgent-emergency-care/reducing-length-of-stay/">higher risk</a> for hospital-borne infections and adverse outcomes. </p>
<p>Less is known about patients waiting at home for an ambulance, but given their precarious circumstance, it is logical to assume they are also at high risk.</p>
<h2>Patients at risk</h2>
<p>Many emergency services system evaluations in <a href="https://www.ama.com.au/articles/ama-ambulance-ramping-report-card">Australia</a>, <a href="https://www.niagararegion.ca/government/departments/health/ems-response-times.aspx">Canada</a> and the <a href="https://www.health.org.uk/publications/long-reads/why-have-ambulance-waiting-times-been-getting-worse">U.K.</a> have reported waiting times longer than performance targets. But the extent to which they are waiting is new. </p>
<p>It has become all too common to read about code zero situations, in which there are no ambulances available. Again there are reports from <a href="https://www.sbs.com.au/news/article/code-red-ambulance-and-triple-zero-systems-are-in-crisis-across-australia/nxf8kw7hc">Australia</a>, the <a href="https://www.mirror.co.uk/news/uk-news/nhs-crisis-brits-who-died-28897334">U.K.</a> and <a href="https://www.saltwire.com/atlantic-canada/news/paramedic-level-zeroes-more-than-doubled-in-2022-during-a-horrendous-year-for-ambulance-delays-100824629/">Canada</a>. People are dying while waiting. </p>
<p>In Australia, ambulance ramping and call delays were recently linked to <a href="https://www.wsws.org/en/articles/2022/10/21/gebn-o21.html">33 deaths over 18 months</a>. </p>
<p>In three examples from the U.K., a woman <a href="https://www.dailymail.co.uk/health/article-11594743/National-Hell-Service-Wife-dies-16-HOUR-ambulance-wait.html">died following a 16-hour wait for an ambulance</a>, a man <a href="https://www.youtube.com/watch?v=BDzhN14OFuA">died when no ambulance was available</a> to take him to the hospital, and an 87-year-old <a href="https://www.independent.co.uk/news/health/ambulance-delays-wait-nhs-glangwili-hospital-b2260228.html">died after waiting 17 hours</a> for an ambulance and then 13 hours in the ambulance at the hospital. </p>
<p>In all three U.K. cases, long handover delays and ambulance ramping were identified as the cause of ambulance unavailability.</p>
<h2>System failures spilling over</h2>
<p>In Canada, the frequency of zero ambulances available <a href="https://www.cbc.ca/news/canada/ottawa/paramedic-level-zero-incidents-2022-availability-numbers-1.6746551">doubled in Ottawa in 2022</a>, with offload delays identified as the number one cause. Code zeros are reported to be daily occurrences, with prolonged frequencies and durations <a href="https://www.thespec.com/news/hamilton-region/2022/10/17/hamilton-paramedics-ambulance-code-zero.html">in Hamilton, Ont</a>. A woman in <a href="https://globalnews.ca/news/8980799/urgences-sante-condolences-91-year-old-dies-waiting-hours-ambulance/">Montréal</a> died after waiting seven hours for an ambulance. </p>
<p>A “canary in the coal mine” is an early indicator of potential danger or failure. The response was insufficient when the ED’s canary died, and the failure spilled over to the ambulance service. Now, with prolonged offload delays routinely causing zero ambulances to be available, the ambulance ramping canary isn’t long for this world either. </p>
<p>This time when the failure spills over, the “canary” at risk is not a metaphorical bird, but is instead a patient waiting at home for an ambulance.</p><img src="https://counter.theconversation.com/content/200420/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Peter Vanberkel receives funding from NSERC. </span></em></p>Ambulance response times have not always met targets, but the alarming new pinch point in our health-care system is that there are no ambulances at all available to respond to calls.Peter Vanberkel, Professor, Department of Industrial Engineering, Dalhousie UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1892882022-12-22T16:56:00Z2022-12-22T16:56:00ZChronic pain: An invisible disease whose sufferers are unfairly stigmatized<figure><img src="https://images.theconversation.com/files/481359/original/file-20220826-2852-t3iovl.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1000%2C667&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Even though chronic pain is recognized by scientists as a disease in its own right, it remains largely under-recognized, under-diagnosed and, above all, subject to many prejudices. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Imagine living with pain every day for months, or even years — pain that is so intrusive, it disrupts every day of your life.</p>
<p>Unfortunately, this is the daily reality of millions of people living with chronic pain. And all too often, they find their condition being stigmatized or even denied outright.</p>
<p>As a doctoral student in the epidemiology of chronic pain, I have the opportunity to work with patient partners. Given the high prevalence and multiple impacts of this disease, it is high time we started working to change attitudes and confront the prejudices that surround it.</p>
<h2>Essential pain and acute pain</h2>
<p>Before discussing chronic pain, let’s start at the beginning. Is pain always a negative thing? Of course not. Pain is essential to our proper functioning. It acts as an <a href="https://www.canada.ca/content/dam/hc-sc/documents/corporate/about-health-canada/public-engagement/external-advisory-bodies/canadian-pain-task-force/report-2019/canadian-pain-task-force-June-2019-report-en.pdf">alarm system</a> to warn us of danger.</p>
<p>For example, if we were to accidentally put our hand on a hot stove top, a pain message would be sent to our brain. Before we even had time to think about it, we would remove our hand from the hot surface, avoiding an intense burn in the process. This pain provides us with the reflexes we need in order to avoid the worst situations.</p>
<p>Pain can also last a little longer. This is the case, for example, after an injury, an operation or an infection. <a href="https://www.canada.ca/content/dam/hc-sc/documents/corporate/about-health-canada/public-engagement/external-advisory-bodies/canadian-pain-task-force/report-2019/canadian-pain-task-force-June-2019-report-en.pdf">This pain will often resolve itself after a normal healing cycle</a> or disappear with the help of treatment. This is called acute pain. Short-term pain like this is perceived more as a symptom.</p>
<h2>Chronic pain, a disease with multiple impacts</h2>
<p>When pain persists beyond the normal healing time, it is no longer considered simply a symptom, but a <a href="https://doi.org/10.1097/j.pain.0000000000000160">disease in its own right</a>. This is called chronic pain. Chronic pain is defined as <a href="https://doi.org/10.1097/j.pain.0000000000001384">pain that persists for a minimum of three months</a>. Yet, for the vast majority of people living with this disease, the pain persists for several years.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/472372/original/file-20220704-12-5r8qlt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/472372/original/file-20220704-12-5r8qlt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/472372/original/file-20220704-12-5r8qlt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/472372/original/file-20220704-12-5r8qlt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/472372/original/file-20220704-12-5r8qlt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/472372/original/file-20220704-12-5r8qlt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/472372/original/file-20220704-12-5r8qlt.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">‘Displacement,’ by Chloe Fleisher, 13, who lives with chronic pain. Submitted as part of the art contest titled ‘Pain and mental health,’ this artwork won an award from the Canadian Pain Society in 2022.</span>
<span class="attribution"><span class="source">(Marimée Godbout-Parent)</span></span>
</figcaption>
</figure>
<p>In these people, the pain message is somehow missing. It is no longer present to warn us of dangers, but becomes a burden on its own. Chronic pain can occur as a result of cancer, an accident, or after surgery. Unfortunately, sometimes we are unable to find the cause. This makes it difficult to treat.</p>
<p>Although this disease is not widely recognized, it is estimated to affect about <a href="https://doi.org/10.24095/hpcdp.31.4.04">20 per cent of the Canadian population</a>. Considering that our population in 2022 is estimated to be close to 39 million, this would mean that approximately 7.5 million people are living with chronic pain. For the purpose of comparison, 7.5 million Canadians is equivalent to <a href="https://worldpopulationreview.com/canadian-provinces/quebec-population">the entire population of Québec</a>. It’s an impressive and worrisome number.</p>
<p>In addition to affecting a large portion of the population, chronic pain <a href="https://www.canada.ca/content/dam/hc-sc/documents/corporate/about-health-canada/public-engagement/external-advisory-bodies/canadian-pain-task-force/report-2019/canadian-pain-task-force-June-2019-report-en.pdf">causes more than just physical pain</a>. The disease affects the daily functioning, psychological well-being, quality of life, social life and work of the people afflicted by it.</p>
<p>Imagine having so much pain that it reduces your ability to work, play with your children, see your friends or concentrate and even affects your ability to carry out everyday tasks. Despite the person’s desire to stay active, the body just can’t keep up. So it’s not surprising that consequences such as fatigue, frustration, sadness, anxiety and depression follow. The constant overlap between physical, psychological and social difficulties creates deep distress in this population.</p>
<h2>A stigmatized disease</h2>
<p>Despite the significant impacts associated with it, <a href="https://doi.org/10.1111/j.1526-4637.2011.01264.x">chronic pain remains largely stigmatized</a>. Indeed, negative attitudes and beliefs that people living with chronic pain <a href="https://doi.org/10.1080/24740527.2017.1369849">have become dependent on their medications, that they are exaggerating the severity of their condition, are just lazy</a> or do not want to help themselves are widespread.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/IcdsYdUls44?wmode=transparent&start=48" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Chronic pain is a very real disease.</span></figcaption>
</figure>
<p>So, knowing the multiple consequences and prevalence of chronic pain, why is there still so much prejudice and stigma towards those who suffer from it?</p>
<p>The question remains unanswered. For some, what we cannot see simply does not exist. Because pain is an experience that varies from person to person, because we don’t have a specific tool for detecting it or because we can’t necessarily see it, pain can seem invisible. We have a harder time feeling <a href="https://doi.org/10.1016/j.jpain.2013.11.002">sympathy or understanding for things that cannot be explained medically</a> with medical tests or X-rays.</p>
<h2>How to become an ally</h2>
<p>So, despite the many explanations offered by patients, they often have to deal with prejudices from health professionals, their entourage or the general population. Many people living with chronic pain feel that their pain is not understood by their friends, family, employers or even their health-care professionals, which adds to their feelings of helplessness, sadness and anger. In addition to dealing with the difficulties that chronic pain brings, these comments place an inestimable burden on sufferers. </p>
<p>Francine, who has been living with chronic pain for 15 years, regularly receives these types of comments from her family and friends:</p>
<blockquote>
<p>Well, you’ve only been walking for 10 minutes, you can do more. Just try harder.</p>
</blockquote>
<p>Sylvie, who has lived with chronic pain for 17 years, has to deal with her doctor’s comments:</p>
<blockquote>
<p>“You are the only patient I have not been able to relieve with cortisone shots in 40 years, so perhaps you should consult a psychologist instead.</p>
</blockquote>
<p>These phrases, which can sound harmless to some, are often loaded with meaning for those who hear them on a daily basis. Accepting chronic pain as a disease is an important and difficult step. It should not be coupled with such pejorative comments.</p>
<p>Without being experts in the field, we can all play a role, in one way or another, in the lives of these people. Offering an active and understanding ear, not making quick judgments and acknowledging their condition is already a huge step in the right direction.</p>
<p>Support and communication with those around you are elements that should not be neglected and can certainly make a positive difference.</p>
<p><em>This article was written in collaboration with Sylvie Beaudoin and Christian Bertrand, patient partners.</em></p><img src="https://counter.theconversation.com/content/189288/count.gif" alt="La Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Marimée Godbout-Parent has received funding from the Canadian Institutes of Health Research (CIHR).</span></em></p>Although chronic pain is recognized by scientists as a disease in its own right, it remains largely under-recognized, under-diagnosed and, above all, associated with numerous prejudices.Marimée Godbout-Parent, Étudiante au doctorat recherche en sciences de la santé, Université du Québec en Abitibi-Témiscamingue (UQAT)Licensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1968662022-12-21T22:27:25Z2022-12-21T22:27:25ZLooking forward into the past: Lessons for the future of Medicare on its 60th anniversary<figure><img src="https://images.theconversation.com/files/502285/original/file-20221221-13-qhlr9y.jpeg?ixlib=rb-1.1.0&rect=36%2C51%2C1595%2C1003&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Former Saskatchewan Premier and national New Democratic Party leader T.C. (Tommy) Douglas in 1965. Douglas was instrumental in the creation of Medicare.</span> <span class="attribution"><span class="source">The Canadian Press</span></span></figcaption></figure><p>It is the <a href="https://esask.uregina.ca/entry/medicare.jsp">60th anniversary</a> of Medicare, but no one seems to care.</p>
<p>It is, after all, hard to be enthusiastic about a system in crisis. Patients can’t find doctors (<a href="https://angusreid.org/canada-health-care-family-doctors-shortage/">almost one in five Canadian adults</a>). Those who have doctors have a hard time getting in to see them (<a href="https://angusreid.org/canada-health-care-family-doctors-shortage/">only 18 per cent can get an appointment within a day or two</a>). </p>
<p>Doctors are burned out, <a href="https://www.cma.ca/news-releases-and-statements/critical-family-physician-shortage-must-be-addressed-cma">leaving their practices with no one to replace them</a>. New physicians want to focus on patient care, <a href="https://thestarphoenix.com/opinion/columnists/murray-mandryk-sask-family-doctor-shortage-requires-new-approach/wcm/fcc52f2e-16df-4f34-84b1-8459a8552d40">not the business of health care</a>. </p>
<p>This is, of course, just the beginning of the problem. The premiers want more money from Ottawa and Ottawa wants more data from the provinces. <a href="https://calgary.ctvnews.ca/premier-under-fire-for-health-savings-account-comments-calls-it-spin-1.6162665">Alberta is making health proposals that some say are a short step away from privatized health care</a>, and the <a href="https://www.cbc.ca/news/politics/health-care-funding-premiers-federal-government-1.6644857">recent meeting between federal and provincial health ministers</a> ended in a stalemate.</p>
<h2>The dawn of Medicare</h2>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/502313/original/file-20221221-13-toye3c.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man at a podium gesturing with his hand, and a line of people in business clothes behind him, with provincial flags" src="https://images.theconversation.com/files/502313/original/file-20221221-13-toye3c.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/502313/original/file-20221221-13-toye3c.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/502313/original/file-20221221-13-toye3c.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/502313/original/file-20221221-13-toye3c.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/502313/original/file-20221221-13-toye3c.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/502313/original/file-20221221-13-toye3c.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/502313/original/file-20221221-13-toye3c.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">B.C. Health Minister Adrian Dix, right, is flanked by his provincial and territorial counterparts as he responds to questions at a news conference without federal Health Minister Jean-Yves Duclos after the second of two days of meetings, in Vancouver on Nov. 8.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Darryl Dyck</span></span>
</figcaption>
</figure>
<p>These seem like intractable problems. But our research suggests part of the solution might be found back in 1962, when the model that would grow into our current health-care system was launched in Saskatchewan, spreading to other provinces over the next few years.</p>
<p>At the dawn of Medicare, the proposed new model resulted in a strike by Saskatchewan doctors worried about “socialized medicine.” </p>
<p>Faced with the prospect of losing access to their doctors, almost 15,000 families (representing 50,000 people) formed 34 community clinic associations, raising over $325,000 (almost $3 million today) over less than a year for <a href="https://harvest.usask.ca/handle/10388/etd-04122010-091353">health-care clinics</a> that patients would own and govern based on <a href="https://www.ica.coop/en/whats-co-op/co-operative-identity-values-principles">democratic co-operative principles</a>.</p>
<p>The clinics adopted a philosophy of care that rejected many of the tenets of conventional medicine, which <a href="https://www.uregina.ca/library/services/archives/collections/faculty-staff/rands.html">Stan Rands</a>, a clinic organizer, described as focused on “physiological and biochemical causes of disease” and dependence on “equipment and tests for the diagnosis and treatment of illness.” The result, he argued, was that it was “<a href="https://www.academia.edu/8520847/Privilege_and_Policy_A_History_of_Community_Clinics_in_Saskatchewan_by_Stan_Rands">ill-equipped to deal with the human and social manifestations of illness or disease</a>.”</p>
<h2>The community co-operative clinic model</h2>
<p>Based on this philosophy, the clinics implemented what were, at the time, radical measures. Instead of being paid on a fee-for-service basis, doctors were paid salaries. Instead of sole practitioner businesses, doctors worked as part of a team deeply engaged and responsive to their communities because the clinics were run by patients. Instead of treating symptoms, the team treated patients holistically, probing the physical and <a href="https://drgabormate.com/book/the-myth-of-normal/">social factors</a> that we now know lead to illness.</p>
<p>Although the clinics strengthened the government’s hand in reaching a settlement with the striking doctors, <a href="https://harvest.usask.ca/handle/10388/etd-04122010-091353">the province never embraced the co-operative clinic model</a>. Instead, the clinics would spend years struggling to be understood by policymakers who tended to favour a conventional system based on fee-for-service, doctor-led Medicare. </p>
<figure class="align-center ">
<img alt="A woman in a white coat, stethoscope and face mask talking to a woman and child in face masks, with a man in a white coat in the background" src="https://images.theconversation.com/files/502312/original/file-20221221-17-79ciiy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/502312/original/file-20221221-17-79ciiy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/502312/original/file-20221221-17-79ciiy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/502312/original/file-20221221-17-79ciiy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/502312/original/file-20221221-17-79ciiy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/502312/original/file-20221221-17-79ciiy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/502312/original/file-20221221-17-79ciiy.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">Community co-op clinics are run by patients instead of sole practitioners. Doctors work as part of a team deeply engaged and responsive to their communities.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Many clinics folded shortly after Medicare was introduced; today, only four remain, with large clinics in <a href="https://www.saskatooncommunityclinic.ca/our-coop-model/">Saskatoon</a>, <a href="https://www.reginacommunityclinic.ca/about-rcc/">Regina</a> and <a href="https://www.coophealth.com/coop-model">Prince Albert</a>, and one smaller rural clinic operating in Wynyard. Even the 2002 <a href="https://publications.gc.ca/collections/Collection/CP32-85-2002E.pdf">Commission on the Future of Health Care in Canada</a>, led by former NDP premier of Saskatchewan Roy Romanow, ignored the sector’s efforts to put its model on the agenda.</p>
<p>Away from the spotlight, the remaining co-operative clinics went about living their philosophy. They hired social workers, offered mental health services, brought in physiotherapists, set up pharmacies, offered in-house minor surgeries, performed house calls, operated forerunners to modern-day telehealth, and set up shop in disadvantaged, poorly served communities like Saskatoon’s west side.</p>
<h2>The future of co-op clinics</h2>
<p>Meanwhile, there are signs that the philosophy of team-based, patient-focused, community-based care may be gaining ground. In 2017, for example, Ontario’s <a href="http://www.matawa.on.ca/corporations/matawa-health-co-operative/">Matawa First Nation</a> opened the country’s first <a href="http://www.matawa.on.ca/corporations/matawa-health-co-operative/">Indigenous-run co-operative clinic</a>. </p>
<p>The provincial government in Ontario operates a large network of <a href="https://www.allianceon.org/news/Association-Ontario-Health-Centres-now-Alliance-Healthier-Communities">not-for-profit community clinics</a> similar in structure to Saskatchewan’s clinics but lacking explicit democratic co-operative control. In addition, <a href="https://theconversation.com/with-family-doctors-heading-for-the-exits-addressing-the-crisis-in-primary-care-is-key-to-easing-pressure-on-emergency-rooms-189199">some Canadian doctors</a> are now advocating for a different model.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-doctor-wont-see-you-now-why-access-to-care-is-in-critical-condition-169818">The doctor won't see you now: Why access to care is in critical condition</a>
</strong>
</em>
</p>
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<p>Elsewhere, there are indications that citizens may be tired of waiting for policymakers to act. As the <em>Globe and Mail</em> recently <a href="https://www.theglobeandmail.com/canada/article-how-a-small-community-on-vancouver-island-responded-to-a-looming/">reported</a>, residents of the Saanich Peninsula, on the southeast coast of Vancouver Island, raised money to open two medical clinics and recruit doctors who could take over from physicians at, or near, retirement. As Dale Henley, the co-chair of the non-profit that owns and operates the clinics told the <em>Globe and Mail</em>, </p>
<blockquote>
<p>“I think we’ve got to do a little more ourselves. We can’t just keep looking at governments all the time, because they’re not that good at it.”</p>
</blockquote>
<p>As we look back on 60 years of Medicare and contemplate its many challenges, it may be time for communities to heed Henley’s call and once again voice their desire in words and action for access to the kind of holistic care pioneered by the co-operative clinics. Maybe this time, policymakers will listen.</p><img src="https://counter.theconversation.com/content/196866/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Marc-Andre Pigeon is the director of the Canadian Centre for the Study of Co-operatives. It receives funding from the co-operative
and credit union sector. The research into the co-operative clinics is funded, in part, by the Saskatoon Community Clinic, one of the clinics being investigated in this research. </span></em></p><p class="fine-print"><em><span>Natalie Kallio is a Professional Research Associate at the Canadian Centre for the Study of Co-operatives, which receives funding from the co-operative and credit union sector. This research is funded, in part, by the Saskatoon Community Clinic, one of the clinics being studied.</span></em></p><p class="fine-print"><em><span>Haizhen Mou does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>At the dawn of Medicare, Saskatchewan’s community co-op clinics pioneered team-based, holistic care. Now, with the health system in crisis 60 years later, it may be time to return to that care model.Marc-Andre Pigeon, Assistant Professor, Johnson Shoyama Graduate School of Public Policy, University of SaskatchewanHaizhen Mou, Professor, Johnson Shoyama Graduate School of Public Policy, University of SaskatchewanNatalie Kallio, Professional Research Associate, Canadian Centre for the Study of Co-operatives, University of SaskatchewanLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1919782022-10-18T20:19:22Z2022-10-18T20:19:22ZFinding community online after finding a lump: Social media and younger adults with cancer<figure><img src="https://images.theconversation.com/files/490300/original/file-20221018-20-gqdw2o.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4357%2C2736&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Research suggests that supports are more likely to be provided to meet the needs of the majority of people with cancer who are older, rather than to younger people with cancer.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>October marks Breast Cancer Awareness Month. The Canadian Cancer Society estimates that <a href="https://cancer.ca/en/cancer-information/cancer-types/breast/statistics">one in eight women will contract breast cancer in their lifetime</a>, making it the most common cancer among Canadian women. </p>
<p>It is also the most commonly diagnosed cancer in women under 40 years old. <a href="https://breastcancernow.org/about-us/media/statements/younger-women-increasingly-diagnosed-breast-cancer">Incidence of breast cancer continues to increase among these younger women</a>, though <a href="https://doi.org/10.3390/ijerph17134884">scientists do not yet understand why</a>. </p>
<p>Young women (and men) with breast cancer face unique challenges, such as <a href="https://www.youngadultcancer.ca/yacprime/">disruptions to career or family plans, greater likelihood of more aggressive cancers and a lifetime of fears of recurrence</a>. Further, many targeted supports (like support groups and resources) are not always available or accessible for younger people. Research suggests that <a href="https://doi.org/10.3389/fonc.2013.00075">supports are more likely to be provided to meet the needs of the majority of people with cancer who are older</a>. </p>
<p>This was made worse during the COVID-19 pandemic. During this time, access to health-care services of all kinds changed, as did cancer care and support. As a result of pandemic restrictions, many face-to face appointments and support groups offered through local and regional organizations were paused or at best moved online. </p>
<p>These changes to cancer care and support made sense in the context of a virus that poses a major threat to immunocompromised people with cancer. But this move also left many <a href="https://doi.org/10.1111%2Fecc.13385">feeling even more isolated, at a time when their diagnosis already brought feelings of loneliness</a>. This in turn has <a href="https://doi.org/10.1080/07347332.2020.1853653">led to depression for some people navigating cancer</a>.</p>
<h2>Cancer in younger patients</h2>
<p>The authors of this article are both women under age 45 who have experienced a cancer diagnosis. Now we study cancer, <a href="https://healthresearchbc.ca/award_researcher/cheryl-heykoop/">its unique impacts on young people</a> and the ways young people can be better supported during and beyond treatment. </p>
<figure class="align-center ">
<img alt="Two women in chairs beside medical equipment. One is middle-aged and one is young." src="https://images.theconversation.com/files/489738/original/file-20221014-17-l36wyf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/489738/original/file-20221014-17-l36wyf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/489738/original/file-20221014-17-l36wyf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/489738/original/file-20221014-17-l36wyf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/489738/original/file-20221014-17-l36wyf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/489738/original/file-20221014-17-l36wyf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/489738/original/file-20221014-17-l36wyf.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">Young patients often feel out of place navigating cancer care, where they are often a generation younger than the others they see around them at appointments or support programs.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>In both our research work and our personal experiences, we’ve recognized the tremendous potential for digital communication technologies like social media and instant messaging to connect younger cancer patients to one another, and provide information, emotional support and, crucially, hope during difficult times. </p>
<p>Research with young adults with cancer <a href="https://doi.org/10.2196/28234">highlights the benefits of social media</a> to <a href="https://doi.org/10.3390/curroncol29020099">offer support specific to adolescents and young adults</a>. And through talking with younger adults and organizations that serve them (such as <a href="https://www.youngadultcancer.ca">Young Adult Cancer Canada</a>), researchers are learning that digital communication tools have been essential for their emotional and mental support needs, particularly during the pandemic. </p>
<p>Younger adults have shared that the communities they find on social media sites like Instagram or TikTok can help them to feel less alone. They often feel out of place navigating cancer care, where they are often a generation younger than the others they see around them at appointments or support programs. </p>
<p>Digital technologies can offer a community of people at the same life stages. When younger people with cancer find community online they also find others who have the same concerns about having children, interrupting their careers, or managing young families during the course of their illness. </p>
<h2>Digital communities</h2>
<p>Digital technologies make these kinds of communities possible because they allow people to connect across geographical boundaries. There might be only one other person your age with cancer in your city or town, and you might never run into them if your treatment appointments don’t line up. But online you can connect with others from around the world, meaning that even people with rare cancers can find one another.</p>
<p>However, not all online tools are created equal. In a soon to be published study, which was recently presented at the 2022 <a href="https://socialmediaandsociety.org/page/2/">Social Media and Society annual conference</a>, Hodson, one of the authors of this article, learned that Facebook and Twitter are viewed as more negative than Instagram or TikTok, which offer more hopeful and positive depictions of cancer. And different platforms also attract different users. Facebook tends to attract gen X users, whereas Instagram and TikTok skew to gen Y and Z — data that needs to be taken into account when providing digital support to people with cancer, and particularly younger people. </p>
<p>Of course, social media also presents challenges for people experiencing a cancer diagnosis. <a href="https://www.proquest.com/openview/e18614b5f377026155470a24c3c76772/1?pq-origsite=gscholar&cbl=18750&diss=y">Alarmingly, they are a growing source of misinformation</a>. And if misinformation leads to people with cancer rejecting conventional treatments, <a href="https://doi.org/10.1093/jnci/djx145">it can result in deadly outcomes</a>. </p>
<figure class="align-center ">
<img alt="A young man wearing glasses and a hospital gown lying with his head on a blue pillow holding a smartphone with an IV line in his hand." src="https://images.theconversation.com/files/490486/original/file-20221018-12-ka32bv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/490486/original/file-20221018-12-ka32bv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/490486/original/file-20221018-12-ka32bv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/490486/original/file-20221018-12-ka32bv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/490486/original/file-20221018-12-ka32bv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/490486/original/file-20221018-12-ka32bv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/490486/original/file-20221018-12-ka32bv.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">Digital technologies make it possible for young cancer patients to connect with each other.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>In Hodson’s study, participants also indicated that they sometimes experienced harassment or trolling when discussing their disease on online platforms. This results in a less safe space for people with cancer when they are at their most vulnerable, and can prevent some people with cancer from benefiting from these valuable connection tools. </p>
<p>Digital communication technologies are an invaluable resource for young people who experience a cancer diagnosis and are living with cancer, but right now most of these groups are created on the fly, are independent and are not moderated. This means that not everyone who needs them has access to them, and when people do use social media to connect with others, they’re exposed to such problems as misinformation and online bullying. </p>
<p>We recommend that health-care institutions and policy-makers alike consider ways to build out communities on popular social media platforms for younger people with cancer to ensure everyone can connect. We encourage social media platforms to create moderation policies and procedures that allow young people experiencing cancer to connect safely. </p>
<p>This October, we call on social media companies to think beyond pink, and provide spaces for all young people with cancer to connect with each other in safe, inclusive and supportive ways.</p><img src="https://counter.theconversation.com/content/191978/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jaigris Hodson receives funding from the Social Sciences and Humanities Research Council of Canada.</span></em></p><p class="fine-print"><em><span>Cheryl Heykoop receives funding from Michael Smith Health Research BC, Vancouver Foundation, and the Canadian Institutes for Health Research. She was diagnosed with cancer as a young adult and volunteers with BC Cancer, Young Adult Cancer Canada, and Callanish Society.</span></em></p>Younger cancer patients have unique challenges, and resources often target older patients. Social media brings younger cancer patients together to share information, emotional support and hope.Jaigris Hodson, Associate Professor of Interdisciplinary Studies, Royal Roads UniversityCheryl Heykoop, Associate Professor, School of Leadership, Royal Roads UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1876742022-08-09T21:20:01Z2022-08-09T21:20:01ZPower to the patient: Person-centred care and how you can take your health into your own hands<figure><img src="https://images.theconversation.com/files/477897/original/file-20220805-24-ttyy19.jpg?ixlib=rb-1.1.0&rect=465%2C0%2C5758%2C4118&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Putting patients at the centre of care means seeing them as a whole person and treating them as a partner in their journey to better health.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p><a href="https://doi.org/10.1371/journal.pone.0229923">Person-centred care</a> (also known as patient-centred care) is the philosophy of giving power back to patients and putting them “at the centre” of care. </p>
<p>It can lead to <a href="https://doi.org/10.1089/dis.2006.9.302">lower health-care spending</a> and <a href="https://doi.org//10.1002/14651858.CD003267.pub2">better patient health outcomes</a>. That’s why person-centred care has become a <a href="https://healthadvocates.cma.ca/news/public-and-health-professionals-agree-canada-needs-patient-centered-care">top priority</a> in Canada.</p>
<p>As a health services researcher working with an <a href="https://interrai.org/">international group of researchers</a>, my goal is to learn more about how person-centred care works and how we can use people’s voices and health information to make it happen. </p>
<p>I’m also a person who uses the health-care system, which is why I know it’s important for everyone to know what person-centred care is, where it came from and how each of us play a part in building a better health-care system. </p>
<h2>What is person-centred care?</h2>
<p>“Putting patients at the centre” is a really vague goal. That’s why your family doctor, pharmacist, physiotherapist and everyone in between probably has different ideas about how to be person-centred. Here are <a href="http://www.ejpch.org/ejpch/article/view/1337">three signs that the care you’re getting is person-centred</a>:</p>
<ol>
<li><p><strong>They see you as a whole person</strong>: You are unique and complex. You have wants, needs, friends and families. That’s why your health-care provider wants to hear what you have to say and respects your right to make choices about your own body.</p></li>
<li><p><strong>They treat you like a partner</strong>: Rather than tell you what to do, your health-care provider listens, teaches, and partners with you to build a care plan that aligns with your goals. Like any partnership, trust is key. You trust them, and they trust you.</p></li>
<li><p><strong>They help you navigate your journey to better health</strong>: They listen to your concerns and validate your feelings. They also give helpful advice using words you understand and point you to other resources when you need them.</p></li>
</ol>
<h2>Where did this idea come from?</h2>
<figure class="align-center ">
<img alt="A woman in a hospital gown and a woman in scrubs and a stethoscope looking at tablet together" src="https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=316&fit=crop&dpr=1 600w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=316&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=316&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=398&fit=crop&dpr=1 754w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=398&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.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">
<figcaption>
<span class="caption">Patients were once expected to be passive in their own care. Person-centred care encourages patients to self-monitor, self-care and advocate for themselves.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>A hundred years ago in the western medical system, <a href="https://doi.org/10.1136%2Fbmj.318.7200.1756">patients were expected</a> to be passive. The health-care provider was the knowledge keeper for your body, so you did what they said without question. That’s why it was revolutionary when, in the 1950s, psychologists started saying that <a href="https://doi.org/10.2147%2FJMDH.S299765">people can cure their own problems when they get the right support</a>. </p>
<p>In the following decades, other experts (including several <a href="https://cdnmedhall.ca/patient-care">influential Canadians</a>) brought even more ideas, like how patients should be <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2236836/">seen as unique human beings</a>. (<a href="https://cancer.ca/en/treatments/complementary-therapies/aboriginal-traditional-healing">Indigenous peoples understood this</a> long before colonizers did.)</p>
<h2>Three ways to push for person-centred care</h2>
<p><a href="https://doi.org/10.1136%2Fbmj.320.7234.526">Person-centred care has become essential</a>. Especially when it comes to <a href="https://www.who.int/news-room/fact-sheets/detail/ageing-and-health">chronic diseases</a>, you need to self-monitor, self-care and advocate for yourself. So what can you do to take your health into your own hands?</p>
<figure class="align-right ">
<img alt="Medical stethoscope with red paper heart on white surface" src="https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=900&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=900&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=900&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1131&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1131&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1131&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Learning about their own conditions and care can empower patients. Libraries, online resources, workshops and service directories can be useful resources.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/medical-stethoscope-with-red-paper-heart-on-white-surface-4386467/">Karolina Grabowska/Pexels</a></span>
</figcaption>
</figure>
<ol>
<li><p><strong>Do your research</strong>: Information is power. Learn as much as you can about your health condition(s) <a href="https://doi.org/10.2196%2Fjmir.5729">to gain confidence, make appointments more efficient and even improve your relationship with your health-care provider</a>. Don’t know where to start? <a href="https://medium.com/everylibrary/what-exactly-does-a-librarian-do-a75b89780370">Ask your local librarian</a> if they have any research tips or book suggestions. Join a virtual community and look for learning opportunities (like workshops or webinars at <a href="https://alzheimer.ca/en">the Alzheimer’s society</a>, <a href="https://www.diabetes.ca/resources/webinars?Categories=&SearchText=&Sort=&Page=1">Diabetes Canada</a> or other big organizations). If you have a health-care provider, Google them to find out what they do, if they speak your native language and what their training background is. If you don’t, service directories may help you find a health-care provider who meets your needs. For example, <a href="https://www.rainbowhealthontario.ca/lgbt2sq-health/service-provider-directory/">Rainbow Health Ontario</a> has a directory of LGBT2SQ-friendly care providers.</p></li>
<li><p><strong>Be prepared</strong>: Don’t be afraid to bring in a list of questions and concerns, and take notes <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539473/">to help you remember what the health-care provider said</a> (for example, jargon you’ll want to look up later). You can also bring in a support person, like a friend or family member, <a href="https://doi.org/10.4103/2249-4863.120767">for emotional support, to advocate for you, to help with decision-making or to take notes</a>. Show your health-care provider that you want to know more about your health and <a href="https://www.cbc.ca/news/canada/first-person-navigating-health-care-1.6514065">don’t be afraid to speak up if you’re feeling dismissed</a>. </p></li>
<li><p><strong>Give feedback</strong>: The challenge with person-centred care is that <a href="https://doi.org/10.1371/journal.pone.0229923">problems in the health system</a>, like staffing shortages, can make it harder to do. But you can help change the system. <a href="https://hbr.org/2021/05/frustrated-patients-are-making-health-care-workers-jobs-even-harder">Be kind to your health-care providers.</a> Share your opinions (on the good and the bad) by filling out patient surveys when you get them. You can also join a patient and family advisory council, committee or network. These are groups of people with lived experience that help improve the health-care system. As a member of a patient and family advisory council myself, I have given feedback on hiring decisions, safety planning, education and more. Look online to find a local, provincial or national group (like the <a href="https://www.patientadvisors.ca/">Patient Advisors Network</a>). </p></li>
</ol>
<p>While you might not be able to change the system on your own, always remember that your voice matters.</p><img src="https://counter.theconversation.com/content/187674/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Amanda receives funding from the Ontario Government as part of the Ontario Graduate Scholarship (OGS) program. She is also affiliated with the Waterloo-Wellington Regional Cancer Program Patient and Family Advisory Council and is a member of the Patient Advisors Network.</span></em></p>Person-centred care sees the patient as a whole, unique individual and puts them at the centre of their health decisions.Amanda Aguilar da Nova, PhD Candidate, Faculty of Health, University of WaterlooLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1652962021-09-17T12:15:34Z2021-09-17T12:15:34ZHow to make comparing prices of an MRI or colonoscopy as easy as shopping for a new laptop<figure><img src="https://images.theconversation.com/files/421698/original/file-20210916-13-wms9l2.jpg?ixlib=rb-1.1.0&rect=1031%2C782%2C4900%2C3166&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A new rule is intended to let patients comparison shop for hospital services.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/photos/shopping-cart-first-aid?agreements=pa:119486&family=creative&license=rf&phrase=shopping%20cart%20first%20aid&sort=best">Black Lollipop/iStock via Getty Images</a></span></figcaption></figure><p>Health researchers <a href="https://doi.org/10.1377/hlthaff.22.3.89">have long argued</a> that the key to reining in <a href="https://nurse.plus/become-a-nurse/soaring-cost-of-health-care/">surging health care costs</a> is to tackle the high prices of services, and one potential way to do this is to provide patients with price transparency. </p>
<p>That is, if people know how much a procedure such as a colonoscopy or MRI will cost, they’re more likely to <a href="https://theconversation.com/us/search?q=hospital+price+transparency">shop around for a better price</a>, just as they do for a wide variety of consumer products. This could, theoretically, increase competition among health care providers and result in lower overall prices for everybody.</p>
<p>A <a href="https://www.cms.gov/hospital-price-transparency">new federal regulation that took effect in January 2021</a> is supposed to do just that by requiring hospitals to post prices of all their services and procedures. But <a href="https://www.rwjf.org/en/library/research/2021/09/new-health-care-transparency-requirements-recommendations-for-optimizing-pricing-data-to-reduce-system-costs.html">researchers</a>, <a href="https://www.healthaffairs.org/do/10.1377/hblog20210311.899634/full/">including us</a>, <a href="https://www.healthsystemtracker.org/brief/early-results-from-federal-price-transparency-rule-show-difficultly-in-estimating-the-cost-of-care">have found</a> that the vast majority of hospitals haven’t been complying with the rule. </p>
<p>This <a href="https://www.cms.gov/newsroom/press-releases/cms-proposes-rule-increase-price-transparency-access-care-safety-health-equity">prompted the Biden administration to crack down</a> in July by increasing fines for noncompliance.</p>
<p>As <a href="https://scholar.google.com/citations?user=mq6SungAAAAJ&hl=en&oi=ao">health</a> <a href="https://scholar.google.com/citations?user=fykU7h4AAAAJ&hl=en&oi=ao">policy analysts</a>, we agree that hospitals need to do more in order for the new regulation to succeed. But the regulation itself needs to be fixed if comparing the price of an appendectomy is ever going to be as easy as shopping for a computer. </p>
<h2>Hospital pricing is murky</h2>
<p>The Centers for Disease Control and Prevention estimates that <a href="https://www.cdc.gov/nchs/fastats/health-expenditures.htm">almost 33 cents of every dollar</a> spent on health care in the U.S. goes to hospitals – and that’s excluding what your doctor bills you separately. </p>
<p>But hospital pricing isn’t just expensive. It’s also murky. </p>
<p>Typically, patients don’t pay hospital bills themselves. Rather, health insurance companies pay most of the bills for patients’ care at agreed-upon amounts that are the <a href="https://www.nytimes.com/interactive/2021/08/22/upshot/hospital-prices.html">result of hospital-insurer negotiations</a>. Different insurers negotiate different rates with different hospitals, which can cause the price of a single procedure to vary widely. </p>
<p>For example, Beaumont Hospital-Royal Oak in Royal Oak, Michigan, <a href="https://www.nytimes.com/interactive/2021/08/22/upshot/hospital-prices.html">bills Blue Cross $728 for a colonoscopy</a>, but makes Humana pay $1,801. The University of Mississippi Medical Center, based in Jackson, Mississippi, charges Cigna $1,463 for the same procedure, while Aetna pays $2,144. </p>
<p>Numbers like these led lawmakers to demand greater price transparency when <a href="https://www.cms.gov/CCIIO/Resources/Fact-Sheets-and-FAQs/increasing-transparency02162012a">they crafted the Affordable Care Act in 2009</a>. But it took a long time for regulators to come up with the rule and resolve legal challenges. And finally on Jan. 1, 2021, the Centers for Medicare & Medicaid Services’ <a href="https://www.cms.gov/hospital-price-transparency">price transparency regulation</a> took effect.</p>
<p>Put simply, the regulation requires almost all hospitals in the U.S. – <a href="https://www.govinfo.gov/content/pkg/FR-2019-11-27/pdf/2019-24931.pdf">about 6,000</a> – to disclose the prices they charge to insurers for every item and service they provide in <a href="https://www.federalregister.gov/documents/2019/11/27/2019-24931/medicare-and-medicaid-programs-cy-2020-hospital-outpatient-pps-policy-changes-and-payment-rates-and#p-1010">machine-readable data files</a>.</p>
<p>Instead of a profusion of confidential, negotiated rates determining the cost of care behind the scenes, patients are supposed to now have information at their fingertips to determine, ahead of time, their cost of care at a given hospital.</p>
<p>This should, in theory, allow them to choose the lowest-cost location for their care. And self-insured companies and insurers themselves could use the same information to <a href="http://www.doi.org/10.1377/hblog20191003.778513">bargain more aggressively</a> with hospitals. </p>
<p>While the jury is still out on whether transparency alone can meaningfully slow the <a href="https://www.commonwealthfund.org/publications/fund-reports/2021/aug/mirror-mirror-2021-reflecting-poorly">soaring cost of health care in the U.S.</a>, there is some evidence that it can work.</p>
<p>New Hampshire created a hospital price transparency tool in 2005 that <a href="https://doi.org/10.1162/rest_a_00765">resulted in modest cost savings</a>, according to a 2019 study. </p>
<p>But any potential policy effect hinges on hospitals actually posting their prices – which, for the most part, they have not.</p>
<h2>Hospitals flouting the rule</h2>
<p>Several hospital associations <a href="https://www.aha.org/system/files/media/file/2019/12/hospital-groups-lawsuit-over-illegal-rule-mandating-public-disclosure-individually-negotiated-rates-12-4-19.pdf%20.pdf">sued the government</a> in 2019, calling the new rule unconstitutional. </p>
<p>But even after <a href="https://www.cadc.uscourts.gov/internet/opinions.nsf/CCDF215AFCAF25F98525864D005716BC/$file/20-5193-1877500.pdf">losing their final appeal</a> in December 2020, most hospitals have simply ignored the rule or posted very limited data. </p>
<p>We found that some hospitals post no data file at all. Others have posted a data file, but without all the <a href="https://www.cms.gov/hospital-price-transparency/hospitals">required elements</a> – such as cash discounts and prices negotiated with specific insurers. Others posted data files with the correct elements, but only for a handful of items and services. Finally, still others post data files that contain <a href="https://www.healthsystemtracker.org/brief/early-results-from-federal-price-transparency-rule-show-difficultly-in-estimating-the-cost-of-care/">discrepancies</a>, are not downloadable or <a href="https://www.wsj.com/articles/hospitals-hide-pricing-data-from-search-results-11616405402">are very difficult to find on their websites</a>. </p>
<p>The number of hospitals that fully comply with all aspects of the regulation is very small: less than 6%, according to <a href="https://static1.squarespace.com/static/60065b8fc8cd610112ab89a7/t/60f1c225e1a54c0e42272fbf/1626456614723/PatientRightsAdvocate.org+Semi-Annual+Hospital+Compliance+Report.pdf">one recent study</a>. </p>
<p>After the White House <a href="https://www.whitehouse.gov/briefing-room/statements-releases/2021/07/09/fact-sheet-executive-order-on-promoting-competition-in-the-american-economy">said it would step up enforcement</a> of the rule, the Centers for Medicare & Medicaid Services began sending out <a href="https://www.fiercehealthcare.com/hospitals/cms-sent-out-its-first-wave-warnings-to-hospitals-noncompliant-its-new-price-transparency">warning letters to noncompliant hospitals</a>, and it is currently conducting a <a href="https://www.cms.gov/outreach-and-educationoutreachffsprovpartprogprovider-partnership-email-archive/2020-12-18-mlnc-se">compliance audit</a>. Additionally, the maximum penalty for noncompliance <a href="https://www.cms.gov/newsroom/press-releases/cms-proposes-rule-increase-price-transparency-access-care-safety-health-equity">was recently increased from $300 per day to $5,500 per day</a> for large hospitals. </p>
<h2>Patients need an app for that</h2>
<p>But even if the hospitals were in full compliance, it wouldn’t matter without a way for consumers to actually compare prices. </p>
<p>The current regulations do not require standardization of the files that hospitals post. As a result, the files that we examined use a wide variety of formats, names and terms that are incompatible. </p>
<p>For price transparency to work, the data needs to be clean, standardized and simple to use so that one can easily compare prices across procedures, payers and hospitals – and even over time. A good example is how the Affordable Care Act established insurance marketplaces, which <a href="https://www.commonwealthfund.org/blog/2021/state-efforts-standardize-marketplace-health-plans">standardized and simplified</a> health insurance plans.</p>
<p>But even if the data were standardized and comparable, it wouldn’t be much use to patients unless there’s a website or app that they can use to see how much two nearby hospitals charge for a specific procedure. </p>
<p>The jury is still out on whether price transparency will lead to a reduction in hospital prices, but it’ll never work unless there’s greater compliance and an easy way for patients and others to efficiently use the data. </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/165296/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Morgane Mouslim receives funding from the University of Maryland Baltimore County. </span></em></p><p class="fine-print"><em><span>Morgan Henderson 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>Health researchers hope a new regulation requiring hospitals to post their prices will tame soaring health care costs, but compliance and standardization are hurdles.Morgan Henderson, Senior Data Scientist, University of Maryland, Baltimore CountyMorgane Mouslim, Policy Analyst, University of Maryland, Baltimore CountyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1556322021-02-28T13:36:45Z2021-02-28T13:36:45ZCOVID-19 hotel quarantine: Exemption for ‘essential’ medical travel confuses doctors, patients<figure><img src="https://images.theconversation.com/files/386485/original/file-20210225-17-1the6o1.JPG?ixlib=rb-1.1.0&rect=14%2C7%2C4820%2C3196&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A guest looks out from a Sheraton hotel window in Mississauga, Ont., on Feb. 22, 2021, as new air travel rules come into effect in Canada.</span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Cole Burston</span></span></figcaption></figure><p>The coronavirus pandemic has changed how we live, where we go, and who we spend time with. These changes are shaped by government policies that have evolved as the pandemic continues. And just when we get used to new policies and procedures, they change again in response to shifting circumstances and new information. </p>
<p>Perhaps the most talked about <a href="https://orders-in-council.canada.ca/attachment.php?attach=40252&lang=en">recent policy changes</a> are the new testing and quarantine measures put in place at Canada’s international borders as of Feb. 22. Along with providing proof of a negative <a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/guidance-documents/national-laboratory-testing-indication.html">polymerase reaction chain (PCR) test</a> within 72 hours before departure, arrivals by air must quarantine in a designated hotel for three nights at their own expense until they receive the <a href="https://www.ctvnews.ca/health/coronavirus/a-breakdown-of-canada-s-isolation-sites-as-details-are-revealed-on-hotel-requirements-1.5300410">results of a PCR test taken upon arrival</a>. They then complete the required 14-day quarantine at home if their test result is negative or in a government-designated facility if it is positive.</p>
<p>These requirements are coupled with <a href="https://www.cbc.ca/news/politics/negative-test-land-1.5906962">new land border measures</a>. Non-essential travellers must show proof of either a negative PCR test taken within 72 hours or a positive COVID-19 test conducted between 14 and 90 days before arrival. Within 24-hours of arrival, a traveller is tested at either a land border crossing or quarantine location (using a self swab). A self-swab test is used again on day 10. The costs for some of this testing may be borne by the traveller.</p>
<h2>Exemptions for essential care</h2>
<p>In mid-February, the Canadian government clarified which groups are exempt from these measures and thus spared the costs and logistics involved. One exemption is for people who have gone abroad for <a href="https://www.cbc.ca/news/business/hotel-quarantine-canada-air-passengers-1.5922086">“essential” medical services or treatment</a>. This exemption requires travellers to <a href="https://travel.gc.ca/travel-covid/travel-restrictions/isolation#exemptions">provide written evidence from a licensed health-care practitioner in Canada stating that the treatment or service sought is essential</a>. It also requires <a href="https://orders-in-council.canada.ca/attachment.php?attach=40249&lang=en">similar documentation from a provider in the destination country upon return to Canada</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/386477/original/file-20210225-15-1rbzfp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman wearing a face mask and carrying a suitcase" src="https://images.theconversation.com/files/386477/original/file-20210225-15-1rbzfp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/386477/original/file-20210225-15-1rbzfp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=453&fit=crop&dpr=1 600w, https://images.theconversation.com/files/386477/original/file-20210225-15-1rbzfp5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=453&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/386477/original/file-20210225-15-1rbzfp5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=453&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/386477/original/file-20210225-15-1rbzfp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=569&fit=crop&dpr=1 754w, https://images.theconversation.com/files/386477/original/file-20210225-15-1rbzfp5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=569&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/386477/original/file-20210225-15-1rbzfp5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=569&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">International air travellers load their luggage onto a shuttle bus to take them to one of the quarantine hotels on Feb. 22, 2021 in Montréal.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Ryan Remiorz</span></span>
</figcaption>
</figure>
<p>While intending to provide clarity regarding who should be exempt from these new border measures, this particular exemption instead compounds uncertainty. No guidelines for what constitutes “essential” medical care are provided. And there has already been <a href="https://www.cbc.ca/radio/checkup/is-it-time-to-ban-non-essential-travel-1.5882508/amid-calls-for-international-travel-ban-experts-say-rules-on-essential-trips-must-be-clarified-1.5885418">criticism of the lack of clarity as to what constitutes “essential” travel during this pandemic</a>.</p>
<p>We are a team of researchers and physicians with expertise in <a href="https://doi.org/10.1186/s12875-015-0245-6">international health travel</a> and <a href="https://theprovince.com/opinion/kelley-lee-and-anne-marie-nicol-why-canada-doesnt-know-how-many-covid-19-cases-are-linked-to-travel">pandemic border measures</a>. Our research suggests the lack of clarity around what constitutes essential medical treatment can pose ethical dilemmas for physicians. While some cases may be clear cut, such as <a href="https://www.cbc.ca/news/politics/patients-medical-treatment-covid19-blair-1.5916105">a cancer patient registered in a clinical trial who must travel to the United States monthly</a>, others are not.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/medical-treatment-not-approved-yet-no-problem-welcome-to-circumvention-tourism-35070">Medical treatment not approved yet? No problem! Welcome to circumvention tourism</a>
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</em>
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<h2>Ethical dilemmas</h2>
<p>Physicians are normally strong advocates for patients and accept fiduciary responsibility for their care. This requires physicians to balance the benefits of a treatment with the risks inherent in travelling during a pandemic. </p>
<p>Ambiguous cases will present ethical dilemmas for physicians. They will need to weigh the potential harms and benefits for patients wanting to contravene <a href="https://travel.gc.ca/travelling/advisories">general public health orders</a> and travel abroad for medical care during the pandemic. </p>
<p>Patients who travel for medical care may unwittingly endanger the lives of themselves or others. New variants of concern are spreading quickly around the world. This is particularly serious for those with certain underlying medical conditions who are already known to <a href="https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html">experience worse COVID-19 outcomes</a>. </p>
<p>People returning from medical treatments may also act as vectors, bringing more contagious variants back home. This is <a href="https://globalnews.ca/news/7638289/coronavirus-hunting-for-variants-travel-restrictions/">a real risk</a>. Physicians who believe the risks to public health outweigh the likely benefits to a patient may, for ethical justifications, decline to write a letter in support of a testing and quarantine hotel exemption.</p>
<figure class="align-center ">
<img alt="Two women wait in the snow outside a hotel" src="https://images.theconversation.com/files/386481/original/file-20210225-15-1wcc30l.jpg?ixlib=rb-1.1.0&rect=12%2C6%2C4189%2C2992&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/386481/original/file-20210225-15-1wcc30l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=428&fit=crop&dpr=1 600w, https://images.theconversation.com/files/386481/original/file-20210225-15-1wcc30l.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=428&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/386481/original/file-20210225-15-1wcc30l.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=428&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/386481/original/file-20210225-15-1wcc30l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=538&fit=crop&dpr=1 754w, https://images.theconversation.com/files/386481/original/file-20210225-15-1wcc30l.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=538&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/386481/original/file-20210225-15-1wcc30l.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=538&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">International air travellers wait to enter one of the quarantine hotels on Feb. 22 in Montréal for the mandatory three-day quarantine.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Ryan Remiorz</span></span>
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<p>Asking physicians to decide what is essential or non-essential medical care also risks devaluing some treatments. This can create disagreements about how to categorize treatments important to patients’ quality of life. </p>
<p>How “essential” are treatments for conditions that are not immediately life-threatening but cause pain or impacts on well-being, such as joint replacement, bariatric surgery, mental health and addictions care, in-vitro fertilization and dental procedures? What about diagnostic testing?</p>
<p>Some physicians will also find it ethically problematic to write exemption letters in support of care that is untested and unproven, causing further conflict with patients who may already present with symptoms of uncertain cause despite extensive investigation.</p>
<h2>Removing ambiguity</h2>
<p>Long-term patient-physician relationships are <a href="https://doi.org/10.1111/j.1468-0009.2005.00409.x">the foundation of the highest quality care</a>. Having physicians, and not policies, as the adjudicators of what constitutes “essential” medical care may harm these very relationships.</p>
<p>Just as <a href="https://www.ctvnews.ca/politics/what-is-non-essential-travel-experts-say-canada-s-definition-is-too-vague-1.5256285">border experts have called for greater definitional clarity</a> on “essential” travel, we must do the same for the new exemption on travel for “essential” medical purposes. </p>
<p>After more than one year into this pandemic, unclear and ambiguous policies risk causing harm to physicians and patients alike.</p><img src="https://counter.theconversation.com/content/155632/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Valorie A. Crooks receives funding from the Canadian Institutes of Health Research, Michael Smith Foundation for Health Research, and Canada Research Chairs Secretariat.</span></em></p><p class="fine-print"><em><span>Anne-Marie Nicol receives funding from the Canadian Partnership Against Cancer. </span></em></p><p class="fine-print"><em><span>Kelley Lee receives funding from the New Frontiers in Research Fund and Canadian Institutes of Health Research.</span></em></p><p class="fine-print"><em><span>Eric Cadesky and Jeremy Snyder 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>Canadian government travel restrictions are an attempt to curb the spread of COVID-19 variants. But vague language around exemptions for medical travel may confuse the physicians who can grant them.Valorie A. Crooks, Professor, Department of Geography and Canada Research Chair in Health Service Geographies, Simon Fraser UniversityAnne-Marie Nicol, Associate Professor, Health Sciences, Simon Fraser UniversityEric Cadesky, Clinical Associate Professor, Faculty of Medicine, University of British ColumbiaJeremy Snyder, Professor, Faculty of Health Sciences, Simon Fraser UniversityKelley Lee, Professor of Global Health Policy, Canada Research Chair in Global Health Governance, Simon Fraser UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1551262021-02-18T21:57:01Z2021-02-18T21:57:01ZWhat the rise of telemedicine means for Canada’s legal system<figure><img src="https://images.theconversation.com/files/383828/original/file-20210211-19-1nxeoz8.jpg?ixlib=rb-1.1.0&rect=4%2C0%2C1349%2C667&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Given the observed and anticipated growth of telemedicine since the beginning of the pandemic, it would be a good idea to clarify and co-ordinate the rules applicable to it in Canada.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/">Shutterstock</a></span></figcaption></figure><p>The current pandemic is a tremendous boost for telemedicine, as many health-care professionals are strongly encouraged to offer online consultations or have no choice but to do so. But even before the pandemic, there was already a growing trend towards the use of teleconsultation, driven in part by various commercial initiatives <a href="https://www.getmaple.ca/">such as Maple</a> <a href="https://www.teladoc.ca/">or Teladoc</a>.</p>
<p>However, there is some legal uncertainty surrounding this practice, raising questions for patients, professionals and regulators alike.</p>
<p>For example, Amazon <a href="https://www.reuters.com/article/us-amazon-com-pharmacy-idUSKBN27X170">announced last November it will offer an online pharmacy</a> in the United States and indicated it had been successful in obtaining pharmacy licences in most American states where drugs would be delivered to consumers.</p>
<p>This initiative does not currently target the Canadian market, but there are questions about what would happen if it did. Should Amazon be required to be licensed in every province and territory where it wants to sell its products? Determining an answer to this question reveals the limitations of the Canadian legal framework for telemedicine.</p>
<p>As someone who has been involved for more than 20 years in various academic and professional activities related to health law and policy — including the regulation of professions — I’ve been looking at the regulatory issues of telemedicine for the past few years.</p>
<h2>Piecemeal and inconsistent rules</h2>
<p>Generally, the <a href="https://laws-lois.justice.gc.ca/eng/Const/page-4.html">organization and regulation of health services</a> provided by hospitals and other institutions, and <a href="https://decisions.scc-csc.ca/scc-csc/scc-csc/en/item/6436/index.do?q=Lafferty+c.+Lincoln">the supervision of the activities of health professionals</a>, fall under provincial jurisdiction, although <a href="https://www.canlii.org/en/ca/scc/doc/2011/2011scc44/2011scc44.html">federal regulations still pertain on certain issues</a>.</p>
<p>A few provinces have already enacted legislation that directly or indirectly affects telemedicine.</p>
<p>Québec, for example, <a href="http://legisquebec.gouv.qc.ca/en/ShowDoc/cs/S-4.2#se:108_1">already oversees telemedicine activities within the public network</a>, particularly in hospitals, thereby excluding services provided in private practices or other contexts. For the most part, services rendered on Maple or Teladoc by Québec physicians in private practice would be exempt from this legislation.</p>
<p>Some provincially constituted professional orders have already sought to regulate telemedicine services provided by their members, most often <a href="https://www.cpsbc.ca/files/pdf/PSG-Telemedicine.pdf">through guides or guidelines</a> which do not necessarily have the same legal force as laws or regulations. </p>
<p>While the <a href="https://www.cpso.on.ca/Physicians/Policies-Guidance/Policies/Telemedicine">College of Physicians and Surgeons of Ontario</a> does not require a physician from another province to be licensed in Ontario to provide telemedicine services to an Ontario resident, the <a href="http://www.cmq.org/page/en/autorisation-speciale-telemedecine-autres-activites.aspx">Collège des médecins du Québec</a> and <a href="https://cpsa.ca/resources/telemedicine/">Alberta College of Physicians and Surgeons</a> indicate that a licence, special authorization or registration with a particular registry would be required.</p>
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À lire aussi :
<a href="https://theconversation.com/a-national-licence-for-doctors-in-canada-is-it-really-possible-130278">A national licence for doctors in Canada: Is it really possible?</a>
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<p>These different approaches are not without consequences. For example, if the local regulation where the patient resides is not applicable, access for that patient to public protection remedies could be more difficult. There is no guarantee the patient will be able to complain to their provincial regulator about services obtained through a teleconsultation.</p>
<p>For health-care professionals, it may be necessary to go through various regulatory authorities to understand the applicable rules and, in some cases, to obtain permits or authorizations. This is what has led some stakeholders to propose the <a href="https://theconversation.com/a-national-licence-for-doctors-in-canada-is-it-really-possible-130278">introduction of national licensing for health professionals</a>, which would be particularly complex in the Canadian context.</p>
<h2>What standards of practice?</h2>
<p>The case law relating to telemedicine is still not very well developed, but already <a href="https://www.canlii.org/fr/qc/qccdcm/doc/2020/2020qccdmd17/2020qccdmd17.html?searchUrlHash=AAAAAQAPdMOpbMOpbcOpZGVjaW5lAAAAAAE&resultIndex=2">some disciplinary decisions</a> highlight the evidence: a health professional who practises in teleconsultation is subject to the same requirements as in a traditional practice of being in the physical presence of the patient. Therefore, he or she cannot work according to lower “standards of practice.”</p>
<p>Generally, in the health professions, these “standards of practice” and the different rules applicable are quite similar from one province to another. However, there are some differences. In a telemedicine context where the patient is not in the same province as the professional, it’s then necessary to determine which rules to apply. Should they be those of the patient’s location or those of the professional’s location?</p>
<p>An interesting comparison is the online sale of regulated products, such as drugs and ophthalmic lenses, in an interprovincial context or to American consumers.</p>
<figure class="align-center ">
<img alt="screen showing Amazon pharmacy web page" src="https://images.theconversation.com/files/379995/original/file-20210121-21-o3190i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/379995/original/file-20210121-21-o3190i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/379995/original/file-20210121-21-o3190i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/379995/original/file-20210121-21-o3190i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/379995/original/file-20210121-21-o3190i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/379995/original/file-20210121-21-o3190i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/379995/original/file-20210121-21-o3190i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Last November, the internet giant Amazon announced the start of an online pharmacy.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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</figure>
<p>Courts in both <a href="https://www.canlii.org/fr/qc/qccq/doc/2005/2005canlii19505/2005canlii19505.html">Québec</a> and <a href="https://www.canlii.org/en/on/onca/doc/2019/2019onca265/2019onca265.html">Ontario</a> have tended to look for the place where the professional act was performed to determine the applicable rules. They may also seek a <a href="https://www.canlii.org/en/on/onca/doc/2013/2013onca381/2013onca381.html">sufficient connection</a> between the provincial rules and the people or organizations to whom they’re intended to apply. That’s based on the activities of those persons or organizations or their place of residence. However, the mere delivery of the product to the patient in a given province may not always be sufficient to make the laws of that province applicable.</p>
<p>Returning to the <a href="https://www.forbes.com/sites/andriacheng/2020/11/17/why-the-new-amazon-pharmacy-could-pose-a-real-threat-to-drugstores/?sh=1a45da2d4a91">Amazon online pharmacy</a>, and despite the <a href="https://www.ocpinfo.com/regulations-standards/practice-policies-guidelines/internet-sites/">administrative requirements</a> of some professional colleges, it is not clear that the laws of the province where the drug would be delivered would be applicable and, therefore, that a licence would be required, unless it could be argued that a professional service specific to pharmacists would be performed there.</p>
<h2>Collaboration is needed between provinces</h2>
<p>Canada is not the only country struggling with the challenge of regulating telemedicine services.</p>
<p>The situation is also complex <a href="https://www.healthit.gov/faq/are-there-state-licensing-issues-related-telehealth#footnote-1">in the United States</a>, where most of the time the professional is required to have both a right to practise in the state where they reside as well as in the state where the patient is. However, <a href="https://www.imlcc.org/">legislative and administrative co-operation agreements</a> are provided for in some professions in some American states.</p>
<p>The effect of these agreements is to facilitate the process of licensing in a “recipient” (or secondary) state where the patient is located, and from a “primary” state where the professional is located. Handling public complaints and public protection measures can then be facilitated, in particular through the possibility of regulatory authorities in the recipient state conducting joint investigations with the regulatory authority of the primary state.</p>
<p>The situation seems somewhat clearer for the European Union, although <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4987488/">still imperfect</a>. In the EU, the <a href="https://hsrc.himmelfarb.gwu.edu/gw_research_days/2018/SMHS/5/">right to practise medicine in one member state</a> would be sufficient to offer services in another member state in telemedicine. It generally follows that the rules to be observed are those of the health-care provider’s location, which is not necessarily to the benefit of the patient.</p>
<p>Ultimately, given the observed and anticipated growth of telemedicine since the beginning of the pandemic, clarification and co-ordination of the rules in Canada would certainly be desirable.</p>
<p>First and foremost it’s the the provinces that should take action in this regard. To this end, they could draw inspiration from the model of legislative and administrative co-operation developed in the United States for certain professions.</p><img src="https://counter.theconversation.com/content/155126/count.gif" alt="La Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Marco Laverdière serves as the executive director and secretary of the Ordre des optométristes du Québec in addition to his academic activities at Université de Sherbrooke and Université de Montréal.</span></em></p>The legal uncertainty surrounding telemedicine services is not without consequences. Patients may not have access to public protection remedies.Marco Laverdière, Avocat, enseignant et chercheur associé en droit et politiques de la santé / Lawyer, lecturer and research associate in Health Law and Policy, Université de Sherbrooke Licensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1476482020-10-27T12:15:07Z2020-10-27T12:15:07ZHealth insurers are starting to roll back coverage for telehealth – even though demand is way up due to COVID-19<figure><img src="https://images.theconversation.com/files/365052/original/file-20201022-19-13fhf1y.jpg?ixlib=rb-1.1.0&rect=120%2C0%2C6277%2C4406&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Private insurers saw telehealth claims increase over 4,000% from 2019 to 2020.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/young-woman-having-online-meeting-with-female-royalty-free-image/1224685401">Solskin/DigitalVision via Getty Images</a></span></figcaption></figure><p>In less than a year, telehealth has gone from a niche rarity to a common practice. Its ability to ensure physical distance, preserve personal protective equipment and prevent the spread of infection among health care workers and patients has been <a href="https://www.cdc.gov/coronavirus/2019-ncov/hcp/telehealth.html">invaluable during the COVID-19 pandemic</a>.</p>
<p>As health care specialists and <a href="https://scholar.google.com/citations?hl=en&user=5Zl62KMAAAAJ&view_op=list_works&sortby=pubdate">researchers</a>, we have long seen the <a href="https://doi.org/10.1186/s12912-020-0400-9">potential of telehealth, providing health care remotely with technology</a>, which has been around for several decades. Despite evidence it could <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">safely treat and manage a range of health conditions</a> in a cost-effective manner, widespread adoption of the practice had been limited by issues including insurance coverage, restrictions on prescribing and technology access.</p>
<p>On March 27, 2020, The Coronavirus Aid, Relief and Economic Security Act, or <a href="https://www.ama-assn.org/delivering-care/public-health/cares-act-ama-covid-19-pandemic-telehealth-fact-sheet">CARES Act</a>, removed many of the barriers to widespread telehealth use. Soon after, the <a href="https://www.medicaid.gov/medicaid/benefits/downloads/medicaid-chip-telehealth-toolkit.pdf">Centers for Medicare & Medicaid released a toolkit</a> encouraging state Medicaid agencies to adopt CARES policy changes to promote the expansion of telehealth. Many <a href="https://www.ahip.org/health-insurance-providers-respond-to-coronavirus-covid-19/">private insurers followed suit</a>. Collectively, these policy changes facilitated the explosion of telehealth. Now, due to the financial strain on health care systems and insurers, the increase in telehealth use may be forced to shrink even though the public health crisis remains. </p>
<h2>Sudden changes</h2>
<p>At the very beginning of the pandemic, the use of telehealth went from <a href="https://www.healthaffairs.org/do/10.1377/hblog20200715.454789/full/">13,000 to 1.7 million</a> visits per week among Medicare recipients. Between mid-March and mid-June 2020, during the height of the national lockdown, over 9 million telehealth visits were conducted for Medicare recipients. Private insurers, who mimicked the CARES Act policy changes, also reported exponential increases – with <a href="https://www.ahip.org/telehealth-growth-during-covid-19/">telehealth claims increasing over 4,000%</a> from the previous year. </p>
<p>Telehealth is typically used for new health concerns like a sore throat, psychotherapy and in-home monitoring with mobile devices for chronic conditions like diabetes, high blood pressure or heart failure. Telehealth is convenient because it can be done from anywhere and more frequently than in-person visits. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/365059/original/file-20201022-14-a97hs9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Family consulting with their doctor from the comfort of their kithen table via laptop." src="https://images.theconversation.com/files/365059/original/file-20201022-14-a97hs9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/365059/original/file-20201022-14-a97hs9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/365059/original/file-20201022-14-a97hs9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/365059/original/file-20201022-14-a97hs9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/365059/original/file-20201022-14-a97hs9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/365059/original/file-20201022-14-a97hs9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/365059/original/file-20201022-14-a97hs9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The doctor will see you now.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/family-consulting-with-their-doctor-royalty-free-image/1245085857">Geber86/E+ via Getty Images</a></span>
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<p>The changes triggered by the CARES Act were intended to last only until the <a href="https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertEmergPrep/Downloads/PHE-Questions-and-Answers.pdf">public health emergency was considered over</a>. Making telehealth coverage expansions permanent could lead people to use their insurance coverage more often by making care more convenient, thus <a href="https://www.penguinrandomhouse.com/books/318776/an-american-sickness-by-elisabeth-rosenthal/">costing private insurance companies more money</a>. </p>
<p><a href="https://www.acponline.org/advocacy/state-health-policy/new-primary-care-codes-for-payment">Provider compensation</a> is traditionally based on the amount of time spent with the patient and how complicated and risky the exam and procedures are to perform. Historically, telehealth was reimbursed at a lower rate than in-person care. The CARES Act had addressed this payment disparity by mandating the same rate for telehealth visits as in-person visits for those insured by Medicare, with more than 80 new telehealth services being reimbursed at the <a href="https://codingintel.com/telemedicine-and-covid-19-faq/">same rate</a> as in-person services. </p>
<p><a href="https://www.wsj.com/articles/as-covid-19-cases-rise-insurers-reduce-coverage-for-virtual-doctors-visits-11601494901">Many private insurers</a> followed suit and paid providers who conducted telehealth visits at the same rate as office visits.
Now, that’s all <a href="https://www.usatoday.com/story/news/2020/07/03/despite-covid-19-increase-insurance-companies-pull-back-telehealth/5352297002/">changing due to financial loss by insurance companies</a>. As of Oct. 1, telehealth visits are not always paid at the same rate as in-person visits by these private insures. </p>
<p>Several big private insurers are <a href="https://www.wsj.com/articles/as-covid-19-cases-rise-insurers-reduce-coverage-for-virtual-doctors-visits-11601494901">pulling back some of their coverage of telehealth</a> for non-COVID issues. Companies including <a href="https://www.uhc.com/health-and-wellness/health-topics/covid-19/telehealth-options">UnitedHealthcare</a> have already rolled back policies that waived co-pays and other fees for non-COVID-related appointments. Other plans such as <a href="https://www.anthem.com/coronavirus/individual-and-family/">Anthem BlueCross BlueShield</a> have extended their coverage through the end of the year, but only the first two sessions are free for the consumer. </p>
<p>Further complicating matters is that <a href="https://www.ahip.org/health-insurance-providers-respond-to-coronavirus-covid-19/#C">every private insurance plan and many state-funded Medicaid plans</a> have different sets of rules and dates for what telehealth treatments they cover. This means some patients are paying more. Costs are getting confusing. Patients may end up with <a href="https://theconversation.com/surprise-medical-bills-increase-costs-for-everyone-not-just-for-the-people-who-get-them-146476">a surprise bill</a> – or they may delay care due to cost. </p>
<h2>A system under pressure</h2>
<p>Health care providers and hospital systems are also in limbo. They don’t know whether they’ll lose telehealth payments when the federal public health emergency for the pandemic lapses or what to expect from private health insurance companies. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/365062/original/file-20201022-14-1ss6dol.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Dozens of medical beds are unloaded at a hospital loading dock." src="https://images.theconversation.com/files/365062/original/file-20201022-14-1ss6dol.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/365062/original/file-20201022-14-1ss6dol.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/365062/original/file-20201022-14-1ss6dol.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/365062/original/file-20201022-14-1ss6dol.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/365062/original/file-20201022-14-1ss6dol.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/365062/original/file-20201022-14-1ss6dol.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/365062/original/file-20201022-14-1ss6dol.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Hospitals have faced many shortages this year, including beds.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/workers-prepare-dozens-of-extra-medical-beds-as-they-are-news-photo/1215975178">Spencer Platt/Getty Images News via Getty Images</a></span>
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</figure>
<p>Hospitals and health systems have had to meet <a href="https://www.oig.hhs.gov/oei/reports/oei-06-20-00300.pdf">unprecedented challenges in 2020</a> – increasing testing, treating infected patients, expanding intensive care unit capacity, safeguarding staff and non-COVID-19 patients, procuring personal protective equipment and canceling nonemergency procedures. These challenges have created <a href="https://www.aha.org/fact-sheets/2020-04-24-fact-sheet-financial-challenges-facing-hospitals-and-health-systems-result">historic financial pressures</a> for health care offices and hospitals. The American Hospital Association estimates that the country’s health care systems are <a href="https://www.aha.org/guidesreports/2020-05-05-hospitals-and-health-systems-face-unprecedented-financial-pressures-due">losing an average of US$50.7 billion per month</a>. </p>
<p>This financial crisis puts telehealth in jeopardy. Providers and health systems still have to pay salaries and purchase expensive technological equipment, making it difficult to accept a reduced rate for telehealth visits. Without payment parity, in the current financial crisis, health care systems will not be able to continue to offer telehealth services.</p>
<h2>What’s next</h2>
<p>A continued <a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/first-and-second-waves-of-coronavirus">increase in COVID-19 cases is expected this fall</a>, just as insurance providers are starting to diminish coverage for telehealth visits. </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>Our team – and teams across every state – will undertake rigorous evaluation of each of the CARES Act policy changes (and similar Medicaid and private insurer changes) and their impact. These evaluations will provide information on how telehealth affects cost and cost effectiveness in the future. </p>
<p>Clearly, telehealth is in jeopardy now as patients are paying more, health care practices are receiving less and the risk of infections increases. While the diminished risk of infection through the use of telehealth seems positive, it is clear to us that insurers are trying to drive patients back to the in-person care model. How will vulnerable populations and the fragile health care system respond? Will patients and providers still have a choice in how they receive and provide care, or will we lose the innovation gained during this period?</p><img src="https://counter.theconversation.com/content/147648/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jennifer A. Mallow receives funding from the US DHHS-Centers for Medicare & Medicaid Services & National Institutes of Health/National Cancer Institute. </span></em></p><p class="fine-print"><em><span>Steve Davis receives funding from the WV DHHR-Bureau for Medical Services & the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. </span></em></p>Widely adopted in the US when pandemic precautions kept people home, telehealth faces a challenge as insurance coverage changes, right when its popularity had surged.Jennifer A. Mallow, Associate Professor of Nursing, West Virginia UniversitySteve Davis, Associate Professor of Health Policy, Management and Leadership, West Virginia UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1475652020-10-07T12:27:41Z2020-10-07T12:27:41ZVIP patients can be a headache for their doctors<figure><img src="https://images.theconversation.com/files/362022/original/file-20201006-22-14rybe2.jpg?ixlib=rb-1.1.0&rect=41%2C200%2C4776%2C3175&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">White House physician Sean Conley gives an update on the patient-in-chief on Oct. 3.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/white-house-physician-sean-conley-gives-an-update-on-the-news-photo/1228867199">Brendan Smialowski/AFP via Getty Images</a></span></figcaption></figure><p>The medical drama playing out daily since President Donald Trump contracted COVID-19 is alarming – but not surprising. Any physician who’s ever rendered medical advice or hospital care to a prominent person probably empathizes with Trump’s medical team. It’s a real challenge to care for VIP patients, whether they’re hospitalized or not.</p>
<p>Of course, following best infection-control practices and providing evidence-based care are what physicians should do with all patients, even difficult or entitled VIPs. Easier said than done.</p>
<p><a href="http://medicine.buffalo.edu/faculty/profile.html?ubit=nielse">As an internist</a>, I’ve personally been threatened by a mob boss who didn’t want to be discharged from the hospital, overwhelmed by hordes of Roma families suspicious of medical care for a dying king and asked to withhold information from the public that would be detrimental to a prominent person. Those are intimidating challenges to professionalism and ethics.</p>
<h2>What is VIP syndrome?</h2>
<p>VIP syndrome is the tendency of clinicians to <a href="https://www.forbes.com/sites/lipiroy/2020/10/04/the-challenges-in-caring-for-vip-patients-like-president-trump/#40ea7174dffc">treat influential or famous patients differently</a> because they feel pressured to accede to the VIP’s wishes.</p>
<p><a href="https://doi.org/10.4088/pcc.v04n0602">Psychiatrists have identified three types</a> of “special” patients who can create difficulty by dazzling or intimidating the care team: celebrities, VIPs and potentates.</p>
<p>Celebrities focus unwanted media attention on medical care. VIPs generate awe so that the care team may lose their objectivity. Potentates exude narcissism and can unearth it in others, triggering power struggles with the health care team.</p>
<p>Each subcategory of VIP patient has the potential to insist on special privileges, desired treatments or changes in care plans that can sabotage the best-thought-out medical regimen. Physicians may order too many tests because of anxiety about missing something – or too few tests or consultations in order to spare the VIP pain, embarrassment or scrutiny. For example, inquiries about substance abuse, sexual activity or psychological symptoms may be omitted. </p>
<p>Unrealistic demands can cause unwise clinical decisions that can then <a href="https://doi.org/10.4300/JGME-D-16-00468.1">result in bad outcomes</a>. For example, if a famous individual has unresolved pneumonia but the treating physician doesn’t ask about sexual history, HIV may never be considered or treated.</p>
<p>A high-profile patient has the potential to monopolize a medical team’s attention that might otherwise be distributed across all patients currently under care. </p>
<p>And VIP syndrome isn’t a concern just inside the Beltway, in Los Angeles or in other places known for powerful, rich or famous inhabitants. A 2017 survey of hospital-based physicians from eight U.S. institutions revealed that a majority of them <a href="https://doi.org/10.12788/jhm.2701">reported feeling pressured</a> by patients, family members and hospital representatives to provide unnecessary care to VIP patients. The researchers pointed out that caring for VIP patients comes with “challenges for physicians as well for the patients themselves.”</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/362023/original/file-20201006-18-1el219t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="handwritten 'Feel Better Mr. President' sign" src="https://images.theconversation.com/files/362023/original/file-20201006-18-1el219t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/362023/original/file-20201006-18-1el219t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=436&fit=crop&dpr=1 600w, https://images.theconversation.com/files/362023/original/file-20201006-18-1el219t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=436&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/362023/original/file-20201006-18-1el219t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=436&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/362023/original/file-20201006-18-1el219t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=547&fit=crop&dpr=1 754w, https://images.theconversation.com/files/362023/original/file-20201006-18-1el219t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=547&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/362023/original/file-20201006-18-1el219t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=547&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Well-wishers gather Oct. 5 outside the hospital where President Trump was receiving treatment for COVID-19.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/supporter-of-us-president-donald-trump-holds-up-a-us-news-photo/1228911716">Olivier Douliery/AFP via Getty Images</a></span>
</figcaption>
</figure>
<h2>Sticking to standards is the best care</h2>
<p>When physicians have written about VIP syndrome over the years, common advice themes emerge: Treat the VIP as you would any other patient with the same condition; avoid power struggles; insist on the most evidence-based therapies; and establish a short, firm chain of command that excludes the entourage accompanying the VIP.</p>
<p>In a 2018 article, several L.A. surgeons urged care teams looking after VIP patients to <a href="https://doi.org/10.1001/jamasurg.2018.3537">do their best to follow standard procedures</a>, treating the high-profile patient like any other. They cautioned against the temptation to “overdo care” with unnecessary tests and procedures.</p>
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<p>Based on media reports, President Trump’s medical team faltered on a number of these recommendations. I argue that bowing to pressure from the First Patient is inexcusable when it puts not just him but others at real risk.</p>
<p>For instance, temporarily leaving the hospital <a href="https://thehill.com/homenews/administration/519562-walter-reed-attending-physician-swipes-at-trump-for-motorcade-visit">to wave to supporters from a hermetically sealed vehicle</a> wasn’t a medically sound choice. A patient who is <a href="https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/isolation.html">COVID-19 positive is supposed to be isolated</a> to protect others from infection. It looks to me as if Trump’s doctors were cowed by a powerful patient.</p>
<p>U.S. presidents have often been <a href="https://theconversation.com/a-brief-history-of-presidents-disclosing-or-trying-to-hide-health-problems-147400">less than forthcoming about their health</a>. While it’s one thing for a doctor to tell only part of the story publicly to <a href="https://abcnews.go.com/Health/wireStory/trumps-doctor-leans-health-privacy-law-duck-questions-73441389">protect patient privacy</a>, whether that’s acceptable when the patient is the leader of a nation is <a href="https://www.theatlantic.com/ideas/archive/2020/03/what-should-we-know-about-the-presidents-health/608392/">subject to debate</a>.</p>
<p><a href="https://www.msn.com/en-us/news/opinion/what-are-the-medical-ethics-behind-disclosing-a-presidents-health-information/ar-BB19JKeF">Patient autonomy doesn’t extend to causing risk to others</a>, though. VIPs may be willful, but physicians should refuse to be complicit with reckless behavior.</p><img src="https://counter.theconversation.com/content/147565/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nancy Nielsen donated to Biden campaign.</span></em></p>When a celebrity, politician or other influential person checks in, a health care team can feel pressured to give in to a VIP’s wishes.Nancy Nielsen, Clinical Professor of Medicine and Senior Associate Dean for Health Policy, University at BuffaloLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1379812020-05-19T19:15:42Z2020-05-19T19:15:42ZA perfect storm for medical PTSD: Isolation, intensive care and the coronavirus pandemic<figure><img src="https://images.theconversation.com/files/335850/original/file-20200518-83352-ogy8b0.jpg?ixlib=rb-1.1.0&rect=6%2C37%2C2281%2C1458&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The coronavirus pandemic has created an environment of uncertainty, fear and despair – emotions that erode mental health. </span> <span class="attribution"><a class="source" href="http://apimages.com">AP Photo/Mosa'ab Elshamy</a></span></figcaption></figure><p>A crisis is silently brewing in hospitals around the world, and it may not be exactly what you think. While the numbers of COVID-19 cases and deaths continue to swell, the very treatments used to battle this deadly disease are triggering life-altering mental health effects. </p>
<p>Patients, already in physical distress, are arriving in intensive care units knowing they have a disease that doctors don’t yet fully understand. Making things worse, they’re isolated and alone. Family and friends who could provide emotional support and advocate for their needs under normal circumstances are kept out of hospitals to avoid spreading the virus further.</p>
<p>The traumatic stress associated with medical treatment, the health care environment and chronic illness can lead to a wide variety of mental health problems. <a href="https://www.counseling.org/docs/default-source/vistas/when-treatment-becomes-trauma-defining-preventing-.pdf">Medical post-traumatic stress disorder</a>, or m-PTSD, as well as depression and anxiety, can worsen patients’ physical health and harm their quality of life. </p>
<p>Medical trauma arises from a <a href="https://www.springerpub.com/managing-the-psychological-impact-of-medical-trauma-9780826128935.html">complex interaction of risk factors</a> associated with a person’s unique experiences and their perceptions of the events, as well as environmental factors. But unlike other types of trauma, it is a direct result of experiencing medical treatment – the very interventions designed to protect patients’ physical health and their lives. It is because of this context, in part, that medical trauma is often overlooked and misunderstood. After all, the hospital is where you go to heal.</p>
<p>As <a href="https://udayton.edu/directory/education/edc/hall_scott.php">professors in mental health</a> and <a href="https://www.xavier.edu/counseling/directory/michelle-hall">counseling</a> who study mental health trauma from medical treatment, we are concerned about the impact isolation is having on COVID-19 patients.</p>
<h2>COVID-19’s stress starts before the hospital</h2>
<p>While medical trauma can occur for anyone in any type of health care setting, risk factors associated with the COVID-19 pandemic have greatly increased the likelihood that patients will <a href="https://doi.org/10.12669/pjms.36.COVID19-S4.2756">experience adverse mental health effects</a>, in part because of the <a href="https://doi.org/10.1192/j.eurpsy.2020.35">stress created by living in a pandemic</a>. </p>
<p>Factors such as isolation, fear of catching a deadly virus and a collective, generalized anxiety <a href="https://doi.org/10.36131/CN20200205">increase people’s vulnerability for getting sick</a> both physically and emotionally. </p>
<p>During the SARS epidemic that started in 2002, researchers in Canada found that <a href="https://www.ncbi.nlm.nih.gov/pubmed/15324539">nearly one-third of people who were quarantined</a> struggled with PTSD or depression. Having been exposed to someone diagnosed with SARS, or even knowing someone diagnosed with it, increased the likelihood of PTSD or depression symptoms. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/335854/original/file-20200518-83363-1pr4oyf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/335854/original/file-20200518-83363-1pr4oyf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=408&fit=crop&dpr=1 600w, https://images.theconversation.com/files/335854/original/file-20200518-83363-1pr4oyf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=408&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/335854/original/file-20200518-83363-1pr4oyf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=408&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/335854/original/file-20200518-83363-1pr4oyf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=512&fit=crop&dpr=1 754w, https://images.theconversation.com/files/335854/original/file-20200518-83363-1pr4oyf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=512&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/335854/original/file-20200518-83363-1pr4oyf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=512&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A chaplain uses an iPad to help a patient communicate with family members who are unable to visit due to hospital visiting restrictions amid the coronavirus pandemic.</span>
<span class="attribution"><a class="source" href="http://apimages.com">Hannah McKay/Pool Photo via AP</a></span>
</figcaption>
</figure>
<p>The COVID-19 pandemic has created an environment of chronic uncertainty, fear and despair – emotions that erode mental health, well-being and immune defenses and that can be propagated in part by the social isolation experienced in quarantine. </p>
<p>It is within this context that people are getting sick.</p>
<h2>PTSD tied to intensive care</h2>
<p>Studies examining PTSD in patients who were treated in the ICU for various medical issues have found rates ranging from <a href="https://www.springerpub.com/managing-the-psychological-impact-of-medical-trauma-9780826128935.html">15%</a> to upwards of <a href="http://doi.org/10.1006/nlme.2002.4083">27.5%</a>. In a Johns Hopkins <a href="http://doi.org/10.1017/S0033291713000214">study of patients with acute lung injury</a> treated in the ICU, 35% had developed clinical PTSD two years following their release from the hospital. </p>
<p>The most potent risk factors researchers have found are also quite prevalent in the current context of COVID-19 quarantine and treatment. They include <a href="https://doi.org/10.1186/s13054-020-02882-x">experiencing delirium</a>, which is more likely in patients of advanced age who receive sedating medications and are socially isolated; <a href="http://doi.org/10.1016/j.genhosppsych.2008.05.006">experiencing fear or psychosis</a> while in the ICU; and the <a href="https://doi.org/10.1017/S0033291713000214">length of stay</a>. Research has demonstrated the strongest risk factor for developing PTSD in the ICU to be the <a href="https://doi.org/10.1186/cc11677">duration of sedation</a>. </p>
<p>This list could easily be mistaken for a typical patient during this pandemic, especially given the severe respiratory symptoms requiring sedation, medications, intubation, the use of ventilators and long hospital stays. </p>
<p>A few early studies have started exploring mental health issues related to COVID-19. <a href="https://doi.org/10.1016/S2215-0366(20)30203-0">A review published May 18 looked at dozens of studies</a> involving patients treated for SARS, MERS or COVID-19 and found that after one year, 34% of the SARS and MERS patients had post-traumatic symptoms. The authors also looked for evidence of neuropsychiatric harm, such as impaired thinking, but found little other than short-term delirium. They did find symptoms of depression in 29% of patients and anxiety in 34%.</p>
<h2>What can be done about it?</h2>
<p><a href="https://doi.org/10.1111/1751-486X.12045">Being hospitalized in the ICU</a> can be disempowering, frightening and disorienting under any circumstances. In the current context of social distancing and isolation brought by COVID-19, patients are at increased risk of experiencing medical trauma without the social supports necessary to help mitigate the effects of ICU treatment. </p>
<p>Using technology to <a href="https://doi.org/10.1186/s13054-020-02882-x">enable patients to video chat with family</a> can help ease some of the loneliness created when quarantined in ICU, but not everyone is able to <a href="https://doi.org/10.36131/CN20200205">access such technology</a>. Further, technology simply cannot take the place of in-person connection with others, which leaves the task of comforting patients emotionally to a stretched and often overburdened health care workforce.</p>
<p>There is little doubt we will see a rise in the need for mental health care in the months and possibly years following the COVID-19 pandemic, both for the general population and especially for those who were hospitalized as a result of the illness. Ensuring that patients are on the radar for mental health referral and treatment following discharge from the hospital is a <a href="https://www.springerpub.com/managing-the-psychological-impact-of-medical-trauma-9780826128935.html">crucial first step</a> to ensuring a full and complete recovery.</p>
<p>[<em>The Conversation’s newsletter explains what’s going on with the coronavirus pandemic. <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=upper-coronavirus-daily">Subscribe now</a>.</em>]</p><img src="https://counter.theconversation.com/content/137981/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>COVID-19 patients are spending weeks in intensive care units, isolated and alone, knowing they have a disease that doctors don’t fully understand. It’s a recipe for post-traumatic stress disorder.Michelle Flaum, Associate Professor, Department of Counseling, Xavier UniversityScott E. Hall, Program Coordinator & Professor, Clinical Mental Health Counseling, University of DaytonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1379652020-05-14T12:03:04Z2020-05-14T12:03:04Z‘I thought I could wait this out’: Fearing coronavirus, patients delayed hospital visits, putting health and lives at risk<figure><img src="https://images.theconversation.com/files/334511/original/file-20200512-82366-cmat2r.jpg?ixlib=rb-1.1.0&rect=121%2C96%2C1955%2C1254&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Emergency rooms across the country have seen sharp drops in the number of patients seeking care for problems other than COVID-19.</span> <span class="attribution"><a class="source" href="http://gettyimages.com">AAron Ontiveroz/MediaNews Group/The Denver Post via Getty Images</a></span></figcaption></figure><p>“Where have all the patients gone?” That’s what doctors in our West Virginia University hospitals began asking as the coronavirus pandemic spread.</p>
<p>We were prepared for a rise in COVID-19 patients, but we didn’t expect the sharp decline we saw in everyday cases. Our emergency department visits fell by half in early April, a time when we would normally see growth as flu season overlaps with an increase in trauma as the weather improves. Inpatient stays fell by nearly two-thirds during the same time period.</p>
<p>Did the population of a state that ranks in the bottom of most health indicators suddenly get better? Did their lung disease, heart disease and vascular disease improve?</p>
<p>In the emergency room, we heard the reason: “I thought I could wait this out,” patients told us.</p>
<p>In hospitals across the U.S. and <a href="https://www.recintervcardiol.org/es/?option=com_content&view=article&id=344&catid=14">Europe</a>, people fearing contracting COVID-19 have been choosing not to seek the emergency treatment they need. One survey conducted in April found that <a href="https://www.emergencyphysicians.org/globalassets/emphysicians/all-pdfs/acep-mc-covid19-april-poll-analysis.pdf">nearly a third of U.S. adults had delayed medical care</a> or avoided seeking care because they were concerned about getting COVID-19.</p>
<p>The numbers reported by hospitals seem to bear that out. U.S. emergency room trips for heart attacks fell 24% in the 10 weeks after the government declared a national emergency, according to <a href="https://www.cdc.gov/mmwr/volumes/69/wr/mm6925e2.htm">data released June 22</a> by the Centers for Disease Control and Prevention. Visits for strokes were down 20%, and visits for hyperglycemia, or uncontrolled high blood sugar, were down 10%. <a href="https://www.cdc.gov/mmwr/volumes/69/wr/mm6919e2.htm#F1_down">Children’s vaccinations also dropped off</a> significantly, according to CDC data, raising new concerns after last year’s <a href="https://www.cdc.gov/mmwr/volumes/68/wr/mm6840e2.htm">measles outbreak</a>.</p>
<p>This has certainly been our experience as physicians and faculty at the West Virginia University School of Medicine. The patients we saw in the emergency room this spring were a lot sicker, and the proportion of emergency room patients who needed hospitalization increased.</p>
<h2>The costs of delaying emergency care</h2>
<p>Delaying treatment for acute and chronic conditions comes at a cost, both human and financial. </p>
<p>A patient with appendicitis who gets treatment early will usually undergo laparoscopic surgery, using small incisions and a camera, and can go home two days later. If the same patient waits too long, however, and a pocket of infection known as an abscess forms, that means more complex surgery. We will have to insert a tube for several days to drain the abscess, and the patient will be hospitalized longer, in addition to going on antibiotics. In the worst case, the appendix could burst and lead to diffuse peritonitis and sepsis, a medical emergency with severe abdominal pain and low blood pressure.</p>
<p>Similarly, if a diabetic with a foot infection that is early in the stages of cellulitis, a painful localized skin infection, waits a week to two longer than usual, there’s a greater chance the infection has reached the bone, becoming an osteomyelitis that could require amputation.</p>
<p>The ultimate cost for delaying treatment can be loss of life. <a href="https://www.cdc.gov/nchs/nvss/vsrr/covid19/excess_deaths.htm">Data from the CDC</a> shows the U.S. had <a href="https://www.washingtonpost.com/health/us-reports-66000-more-deaths-than-expected-so-far-this-year/2020/04/29/b6833548-8a68-11ea-ac8a-fe9b8088e101_story.html">66,000 more deaths than expected</a> from January through the end of April, with only about half of those linked to COVID-19. In April and May, the U.S. saw about <a href="https://public.tableau.com/views/COVID_excess_mort_withcauses_06172020/WithAndWithoutCOVID">13% more non-COVID-19 deaths</a> than would have been expected. </p>
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<p>In some cases, clinics have tried to balance the risks. For example, many clinics delayed preventative care such as cancer screenings because of the risk of COVID-19. One U.S. study found <a href="https://ehrn.org/delays-in-preventive-cancer-screenings-during-covid-19-pandemic/">an abrupt drop</a><a href="https://ehrn.org/delays-in-preventive-cancer-screenings-during-covid-19-pandemic/"> in preventative cancer screenings</a> of between 86% and 94% through April. Treatments for cancer patients continued, but with hospitals taking <a href="https://www.ucsfhealth.org/education/faq-covid-19-for-patients-with-cancer">extra precautions</a> to protect patients while their immune systems are compromised.</p>
<h2>The hospital experience is changing</h2>
<p>COVID-19 is not going away anytime soon, nor will heart attacks, strokes or appendicitis.</p>
<p>If you feel you need to see your doctor, go. If you feel you need to go to the emergency department, call 911. It’s better than the pain and costs that can come with delay.</p>
<p>Your experiences during hospital visits going forward will definitely be different for a while. People arriving for hospital care that doesn’t require staying overnight should expect some kind of screening process to make sure that they are not ill with COVID-19. The health care system will encourage social distancing at check-ins, as well as in the waiting rooms, and everyone will be wearing face masks.</p>
<p>While these unprecedented times have upended our care processes, they also offer patients and health care systems new opportunities.</p>
<p>When we talk to our patients, many of them appreciate the opportunity for virtual visits, especially those at highest risk for complications from COVID-19 infection. The ability to establish virtual urgent care as well as offer many clinical services through virtual visits is here to stay.</p>
<p>The past few weeks have seen very significant changes at all points of patient entry into a hospital or clinic. However, clinical medicine’s fundamental principle of <em>primum non nocere</em>, “first do no harm,” prevails, and we remain committed to making sure that patients who need care get it on time and do not have to delay their visits or ignore their symptoms.</p>
<p><em>This article was updated June 23 with new data from the CDC.</em></p>
<p>[<em>You need to understand the coronavirus pandemic, and we can help.</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=upper-coronavirus-help">Read The Conversation’s newsletter</a>.]</p><img src="https://counter.theconversation.com/content/137965/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Delaying medical care comes at a cost, both human and financial. The patients some emergency rooms have been seeing are a lot sicker and more likely to need hospitalization.Arif R. Sarwari, Physician, associate professor of infectious diseases, chair of Department of Medicine, West Virginia UniversityChristopher Goode, Emergency medicine physician, chair of Emergency Medicine, West Virginia UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1372212020-05-13T12:38:52Z2020-05-13T12:38:52ZWhat is a clinical trial? A health policy expert explains<figure><img src="https://images.theconversation.com/files/332860/original/file-20200505-83740-e7ubth.jpg?ixlib=rb-1.1.0&rect=14%2C7%2C4852%2C3246&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Over 2,000 drugs are approved by the FDA for human use. </span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/top-view-of-various-pills-and-tablets-on-the-blue-royalty-free-image/1177505480">Yulia Reznikov/Movement via Getty Images</a></span></figcaption></figure><p>A commonly used malaria drug was recently proposed as a treatment for COVID-19 during a <a href="https://www.whitehouse.gov/briefings-statements/remarks-president-trump-vice-president-pence-members-coronavirus-task-force-press-briefing-6/">White House press briefing</a>, even though it hadn’t yet been properly evaluated in clinical trials or approved for this use. Does the urgency of the current pandemic give doctors a good reason to skip evaluation and rush an untested drug to patients?</p>
<p>The field of medicine considers <a href="http://dx.doi.org/10.1136/adc.2004.058222">randomized-controlled trials</a>, also known as “clinical trials,” as the gold standard for assessing the effectiveness of new treatments. These studies set up a fair test for treatments and enable researchers to rule out alternate explanations. Without randomized-controlled trial evidence to guide them, doctors risk wasting resources on ineffective treatments or causing harm to patients.</p>
<h2>What is a randomized-controlled trial?</h2>
<p>A controlled trial means that study participants are split into two groups: One group is given the treatment and the other (the control group) is not. The control group may be given a <a href="https://www.nia.nih.gov/health/placebos-clinical-trials">placebo that mimics the actual treatment</a>, but does not contain the treatment being tested.</p>
<p>For example, a sugar pill or an injection of saline solution may be used instead of a dose of the drug. This ensures the only meaningful difference between the two groups is whether they received the treatment or not. </p>
<p>The control group helps researchers learn what would have happened to the treatment group if they hadn’t received the treatment. For example, some patients may recover on their own. Researchers need to know how often this happens, so they don’t attribute all recoveries to the effect of the treatment.</p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/332859/original/file-20200505-83721-8fxo5i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/332859/original/file-20200505-83721-8fxo5i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/332859/original/file-20200505-83721-8fxo5i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/332859/original/file-20200505-83721-8fxo5i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/332859/original/file-20200505-83721-8fxo5i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/332859/original/file-20200505-83721-8fxo5i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/332859/original/file-20200505-83721-8fxo5i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/332859/original/file-20200505-83721-8fxo5i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Randomization ensures apples are compared to apples.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/man-flipping-one-pound-coin-pounds-sterling-royalty-free-image/159615167">Monty Rakusen/Cultura via Getty Images</a></span>
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<p>Study participants are <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3942596/">randomly assigned</a> to one group or the other, a process similar to a coin toss. Just as a coin toss is equally likely to end up heads or tails, study participants are equally likely to end up in the treatment or the control group. With enough study participants, this results in two groups that closely resemble each other. The only difference is that one group got “heads” while the other got “tails.”</p>
<p>The randomization of randomized-controlled trials with large enough samples ensures that all possible differences are accounted for, even those that may not be observed, such as genetic traits. </p>
<p>If the treatment and control groups are similar at the start of the study but end up with different outcomes, the treatment is the most likely cause. The randomized-controlled trial allows researchers to rule out alternative explanations.</p>
<h2>What if patients aren’t randomly assigned?</h2>
<p>If doctors were allowed to choose which patients received the treatment, it’s likely the treatment and control groups would not resemble each other, making it much harder to rule out different factors at play. </p>
<p>For example, malaria drugs aren’t approved for use against COVID-19, but may be prescribed to patients under <a href="https://www.fda.gov/news-events/public-health-focus/expanded-access">the Food and Drug Administration’s “expanded access” program</a>. It allows certain drugs to be used as a last resort to treat seriously ill patients when no other treatments are available. </p>
<p>These “last resort” patients are frailer than those who had a milder form of the disease or who responded well to other treatments. When you’re comparing very sick patients to healthier patients, the effect of the treatment is hard to see because it may be obscured by important differences such as <a href="https://www.healthypeople.gov/2020/about/foundation-health-measures/Determinants-of-Health">age, diet, cigarette use, heart disease or obesity</a>.</p>
<p>If frail patients on treatment fared significantly better than strong patients without it, researchers could conclude the treatment was effective. But this situation is extremely rare, which is why doctors <a href="http://dx.doi.org/10.1097/MLR.0b013e3181dbebe3">generally can’t draw valid conclusions</a> about a drug’s effectiveness in a “last resort” situation. Too many other factors are likely at play.</p>
<p>Some researchers may be able to use sophisticated statistics techniques to account for the differences between frail and strong patients. But there is a long list of potential differences between frail and strong patients, so it is hard to address them all. Gauging the <a href="https://doi.org/10.1086/420936">quality of such statistical analysis</a> is also difficult, so these studies should be viewed with skepticism.</p>
<h2>Approving drugs prematurely</h2>
<p>Without results from randomized-controlled trials, doctors can’t be sure whether a potential new treatment will help patients, harm them or prove ineffective. </p>
<p>The case of the malaria drug hydroxychloroquine as a potential treatment for COVID-19 underscores this concern. In an early wave of optimism, doctors prescribed and some even stockpiled so much hydroxychloroquine that <a href="https://jamanetwork.com/channels/health-forum/fullarticle/2764607">pharmacies reported shortages</a> of the drug. </p>
<p>While <a href="https://www.covid19treatmentguidelines.nih.gov/antiviral-therapy/">there is insufficient evidence</a> from U.S.-based randomized-controlled trials to determine the effectiveness this treatment for COVID-19, it has caused some patients to develop <a href="https://www.fda.gov/drugs/drug-safety-and-availability/fda-cautions-against-use-hydroxychloroquine-or-chloroquine-covid-19-outside-hospital-setting-or">serious heart rhythm problems</a>. Prematurely prescribing this treatment to all but the “last resort” cases may instill false hope, waste medical resources and, most importantly, put patients at risk.</p>
<hr>
<p><em>This article was updated to clarify that as of May 15, 2020, randomized controlled trials have not yet provided enough evidence to know whether or not hydroxychloroquine is an effective treatment for COVID-19.</em></p><img src="https://counter.theconversation.com/content/137221/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Zoë McLaren does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The only way to know if a medical treatment actually works is with a randomized-controlled trial.Zoë McLaren, Associate Professor of Public Policy, University of Maryland, Baltimore CountyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1321462020-05-13T12:38:36Z2020-05-13T12:38:36ZSurprise medical bills continue during coronavirus time, and Congress still misses major points<figure><img src="https://images.theconversation.com/files/322157/original/file-20200322-22594-mm6uok.jpg?ixlib=rb-1.1.0&rect=39%2C0%2C4368%2C2864&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Surprise medical bills are the scourge of patients.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/cost-of-health-royalty-free-image/157422338?adppopup=true">Getty Images / LdF</a></span></figcaption></figure><p>I am a <a href="https://scholar.google.com/citations?user=I44s3EkAAAAJ&hl=en">health policy scholar</a> who became a patient last year, when I needed a surgical repair to a heart valve. My two identities united the day after my operation, when a congenial woman from the admissions department came to discuss my insurance with me.</p>
<p>Her intent was to make sure I understood my forthcoming medical bill. Put more starkly, she wanted to remove any surprises from a forthcoming <a href="https://www.brookings.edu/blog/usc-brookings-schaeffer-on-health-policy/2019/08/01/what-is-surprise-billing/">surprise bill</a>, which typically occur when patients get caught between their insurer and their provider. Surprise bills have become the <a href="https://www.vox.com/health-care/2018/12/18/18134825/emergency-room-bills-health-care-costs-america">scourge</a> of U.S. health care, and despite <a href="https://abcnews.go.com/Health/wireStory/white-house-surprise-bills-covid-19-patients-70077410">many promises</a>, policymakers have remained mostly feckless at stopping them. New accounts now report that surprise bills have even hit <a href="https://www.nbcnews.com/health/health-care/got-coronavirus-you-may-get-surprise-medical-bill-too-n1187966">people seeking care for COVID-19</a>.</p>
<p>The timing of my admissions department representative was quite poor – I was still in the ICU, had multiple tubes piercing my neck and torso, and hadn’t slept much of the night – but her visit was revealing. One awkward but central dynamic in the issuance of surprise bills, and one of the reasons a solution has been so evasive, is that their shame lies not just in the inflated amounts they demand. Their true outrage is in their disrespect for patient autonomy.</p>
<h2>The stress of surprise bills</h2>
<p>The chief complaint concerning surprise bills is that they demand amounts that far exceed what any reasonably informed person would pay. They cause <a href="https://www.vox.com/health-care/2018/4/10/17156230/emergency-bill-prices-pediatric-patients">real financial pain</a> and target unsuspecting patients moments after they required medical care. </p>
<p>Surprise bills have also become widespread. One <a href="https://jamanetwork.com/journals/jama/fullarticle/2760735?guestAccessKey=9774a0bf-c1e7-45a4-b2a0-32f41c6fde66&utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_content=tfl&utm_term=021120">recent study</a> reported that as many as 20% of elective surgeries at in-network hospitals produce surprise bills. The average amounts of those bills far exceed what 40% of patients could pay with their <a href="https://www.federalreserve.gov/publications/2019-economic-well-being-of-us-households-in-2018-dealing-with-unexpected-expenses.htm">available savings</a>. Another study just reported that average surprise bills <a href="https://www.healthaffairs.org/doi/pdf/10.1377/hlthaff.2019.01138">rose 81%</a> just from 2014 to 2017. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/322158/original/file-20200322-22606-1bhfzzc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/322158/original/file-20200322-22606-1bhfzzc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/322158/original/file-20200322-22606-1bhfzzc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/322158/original/file-20200322-22606-1bhfzzc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/322158/original/file-20200322-22606-1bhfzzc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/322158/original/file-20200322-22606-1bhfzzc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/322158/original/file-20200322-22606-1bhfzzc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Sometimes, the stress from a medical bill rivals the stress from the disease.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/pregnant-woman-in-hospital-bed-royalty-free-image/612527230?adppopup=true">Getty Images / Mayte Torres</a></span>
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<h2>Failed solutions</h2>
<p>Congress has wrangled over <a href="https://www.axios.com/congress-surprise-medical-bills-legislation-82338ac2-5dab-4ed1-9b7e-fd8c23411040.html">proposed solutions</a> to surprise bills, and it appears that the <a href="https://edlabor.house.gov/imo/media/doc/2020-02-11%20Surprise%20Billing%20Fact%20Sheet%20(Final).pdf">leading candidate for reform</a> will be to be institute <a href="https://waysandmeans.house.gov/sites/democrats.waysandmeans.house.gov/files/documents/Consumer%20Protections%20Against%20Surprise%20Medical%20Bills_Section-by-Section_02%2006%2020%20(final).pdf">arbitration proceedings</a>. The logic is that arbitrating financial disputes between payers and providers will protect the patient from billing confusion. </p>
<p>But there’s a problem with arbitration. It still allows providers to extract prices that exceed market rates. By definition, a surprise bill reflects a strategy of subterfuge; a physician provides a service at a price that no informed payer would ever agree to if given the choice. In no other industry can someone provide a service and then <a href="https://www.ajmc.com/journals/issue/2017/2017-vol23-n4/battling-the-chargemaster-a-simple-remedy-to-balance-billing-for-unavoidable-out-of-network-care">demand a price</a> that far exceeds what others charge. If arbitration generates compromises between the reasonable prices to which an insurer agrees and the inflated “surprise” price, <a href="https://www.healthaffairs.org/do/10.1377/hblog20190628.873493/full/">health care costs</a> will go up for everyone. </p>
<p>Imagine an auto mechanic replacing your tires and billing you US$500 per tire after completing the work. When you remark that everyone else sells the same tires for $80 each, should the mechanic be entitled to arbitration to resolve your disagreement? As a general matter, the law says no. To the contrary, if the auto mechanic did not state the price in advance, <a href="https://www.law.cornell.edu/ucc/2/2-305">the law requires</a> you to pay no more than the market price that everyone pays. Arbitration is just a backdoor strategy to extract unearned money from patients and insurers. </p>
<h2>It’s not just about bills</h2>
<p>Lost in the political debate is that the real injury from surprise bills is their capitalizing upon a patient’s vulnerability. Patients need to trust their providers, and that makes them uniquely exposed to exploitative financial practices. </p>
<p>Unlike nearly every other aspect of the economy, health care prices <a href="https://www.wsj.com/articles/behind-your-rising-health-care-bills-secret-hospital-deals-that-squelch-competition-1537281963">are overwhelmingly hidden</a> from patients. Medicine is fastidious about patients providing <a href="https://www.ama-assn.org/delivering-care/ethics/informed-consent">informed consent</a> before receiving care, but there is little to no commitment to ensuring that patients can give <a href="https://www.nejm.org/doi/full/10.1056/NEJMp1205225">informed consent to prices</a>. This prevents patients from making fully informed decisions about their health care, and it removes much-needed price competition from health care markets. More important, it denies individuals their autonomy as informed patients and consumers.</p>
<p>I felt this lack of personal agency well before the woman from the admissions department visited me in the ICU. Preceding my surgery, I wandered hospital hallways in a patient gurney, feeling exposed and layered with unwanted sympathy. Only a few weeks before, I walked these same hallways as a faculty member who lectured to physicians and staff. Like all other patients, I lost part of myself when I submitted to my physician’s care. Though this might be a necessary consequence of modern medicine, it also invites nefarious conduct. Surprise billing is despicable precisely because it capitalizes on our vulnerability as patients. </p>
<p>American medicine will continue to fail – it will continue to cost unsustainable amounts without nurturing a healthy population – if it continues to deny patients their agency as willing and informed partners in their care. All of us deserve protection from surprise bills, and all of us deserve protection from arbitration processes that will inflate health care costs. But most critically, we deserve to enjoy the autonomy as patients that we have in other parts of our lives.</p>
<p>[<em>You’re smart and curious about the world. So are The Conversation’s authors and editors.</em> <a href="https://theconversation.com/us/newsletters/weekly-highlights-61?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=weeklysmart">You can get our highlights each weekend</a>.]</p><img src="https://counter.theconversation.com/content/132146/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Barak Richman 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>When you receive a medical bill you didn’t expect – even though you’re insured. And it’s still happening, even in time of COVID-19.Barak Richman, Katharine T. Bartlett Professor of Law, Duke UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1355652020-04-20T05:45:02Z2020-04-20T05:45:02ZCan I visit my loved one in hospital even if they don’t have coronavirus?<figure><img src="https://images.theconversation.com/files/328241/original/file-20200416-140701-15nxt9e.jpg?ixlib=rb-1.1.0&rect=0%2C4%2C1000%2C661&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/flower-patient-selective-focus-on-her-115642765">Shutterstock</a></span></figcaption></figure><p>The number of people with suspected or confirmed COVID-19 who need to go to hospital is <a href="https://www.health.gov.au/resources/publications/coronavirus-covid-19-at-a-glance">increasing</a>.</p>
<p>So family members and friends will be asking whether they can visit their loved ones. People will also want to visit patients in hospital for another reason. Perhaps they’ve just given birth or are recovering after a heart attack.</p>
<p>Whether you can visit or not depends on a mix of policies put in place nationally, by the states, and by individual hospitals.</p>
<p>And as the situation can change daily, it’s best to check the hospital’s website or phone ahead to avoid being refused entry at the hospital gates.</p>
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<strong>
Read more:
<a href="https://theconversation.com/banning-visitors-to-aged-care-during-coronavirus-raises-several-ethical-questions-with-no-simple-answers-134663">Banning visitors to aged care during coronavirus raises several ethical questions – with no simple answers</a>
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<h2>Why are more people in hospital?</h2>
<p>The number of new cases diagnosed with the coronavirus each day in Australia is <a href="https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert/coronavirus-covid-19-current-situation-and-case-numbers">decreasing</a>. But the number of people expected to be hospitalised with a suspected or confirmed case is still <a href="https://www.health.gov.au/resources/publications/coronavirus-covid-19-at-a-glance">increasing</a>. </p>
<p>This is due to the time lag, because whether there’s a need to hospitalise a patient for COVID-19 only becomes evident around the <a href="https://ama.com.au/article/update-novel-coronavirus-covid-19">fifth day after diagnosis</a>, sometimes even later. Further, patients with severe COVID-19 often have to remain in hospital for some time.</p>
<p>Initial estimates by the <a href="https://www.who.int/publications-detail/clinical-management-of-severe-acute-respiratory-infection-when-novel-coronavirus-(ncov)-infection-is-suspected">World Health Organisation</a> predicted about 81% of COVID-19 infections to be mild or have no symptoms. But about 14% develop severe disease and require oxygen and 5% become critically unwell, requiring mechanical ventilation. </p>
<p>The <a href="https://www.abc.net.au/news/2020-03-17/coronavirus-cases-data-reveals-how-covid-19-spreads-in-australia/12060704">latest data for Australia</a> look a little better with 8% receiving hospital care, including 2% being in intensive care units (ICU).</p>
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<strong>
Read more:
<a href="https://theconversation.com/why-are-older-people-more-at-risk-of-coronavirus-133770">Why are older people more at risk of coronavirus?</a>
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<p>People spend on average <a href="https://www.doherty.edu.au/news-events/news/covid-19-modelling-papers">eight days in hospital with COVID-19</a>. But if they develop serious complications and require a ventilator, the average length of stay might be <a href="https://www.esahq.org/esa-news/analysis-of-the-number-growth-of-icu-patients-with-covid-19-in-italy-and-lombardy/">double that</a>.</p>
<p>This is much longer than the <a href="https://www.aihw.gov.au/reports/hospitals/admitted-patient-care-2017-18/data">usual length of hospital stays</a> which, for patients who spent at least one night in hospital, is 5.3 days overall. </p>
<h2>How are hospital visits changing?</h2>
<p>Before the coronavirus, hospitals encouraged family and friends to visit their loved ones as <a href="https://www.betterhealth.vic.gov.au/health/servicesandsupport/visitors-in-hospital">this can help</a> reduce patients’ anxiety and stress, and may help them recover faster.</p>
<p>Visiting hours and hospital policies are set to limit traffic in and out of wards, allow treatment to take place and for patients to rest and recover.</p>
<p>Hospitals might also have asked visitors to clean their hands when they first arrived to avoid bringing infections in.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/328246/original/file-20200416-140715-pesafd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/328246/original/file-20200416-140715-pesafd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/328246/original/file-20200416-140715-pesafd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/328246/original/file-20200416-140715-pesafd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/328246/original/file-20200416-140715-pesafd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/328246/original/file-20200416-140715-pesafd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/328246/original/file-20200416-140715-pesafd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/328246/original/file-20200416-140715-pesafd.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">Visitors will be asked to clean their hands before and after seeing their loved one in hospital.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/public-hand-sanitizer-next-elevator-hospital-488408785">Shutterstock</a></span>
</figcaption>
</figure>
<p>In light of COVID-19, much tougher restrictions are now in place to protect the patient, hospital staff and the visitors. </p>
<p>For patients with COVID-19, rules about visiting them in hospital, and especially in the ICU, may be very restricted. Visiting may be prohibited or, if allowed, only for a very short amount of time under extra precautions.</p>
<p>For example, in <a href="http://www.cec.health.nsw.gov.au/__data/assets/pdf_file/0006/567987/Infection-control-nCoV-2019-Hospital-Setting-V2-.pdf">New South Wales</a>, visitors must wear a surgical mask and protective eyewear if they are visiting a person suspected or confirmed to have coronavirus.</p>
<p>These restrictions are set nationally and by individual states, and adapted into the visiting policies of individual hospitals.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-does-it-mean-to-be-immunocompromised-and-why-does-this-increase-your-risk-of-coronavirus-135200">What does it mean to be immunocompromised? And why does this increase your risk of coronavirus?</a>
</strong>
</em>
</p>
<hr>
<h2>Different states have different rules</h2>
<p>The most recent <a href="https://www.dhhs.vic.gov.au/health-services-and-general-practitioners-coronavirus-disease-covid-19">rules for Victoria</a> allow patients in public, private and denominational hospitals only one visit per day, a maximum of two visitors at a time and for up to two hours.</p>
<p>However, you will be prohibited from visiting if you have:</p>
<ul>
<li>been diagnosed with coronavirus and should be in isolation</li>
<li>arrived in Australia within the last 14 days</li>
<li>recently come into contact with a person confirmed to have the coronavirus</li>
<li>a temperature over 37.5°C or symptoms of a respiratory infection.</li>
</ul>
<p>These restrictions are in place regardless of whether your loved one has COVID-19 or is in hospital for another reason.</p>
<p>In some cases, visitors can stay longer than two hours. These exemptions include parents or carers of people under 18, carers of people with a disability, the partner or support person of someone giving birth, a person accompanying a patient to the emergency department, or a person providing end-of-life support.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/328989/original/file-20200420-152607-1i273en.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/328989/original/file-20200420-152607-1i273en.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/328989/original/file-20200420-152607-1i273en.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/328989/original/file-20200420-152607-1i273en.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/328989/original/file-20200420-152607-1i273en.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/328989/original/file-20200420-152607-1i273en.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/328989/original/file-20200420-152607-1i273en.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">Different hospitals have imposed different restrictions on visitors during the coronavirus pandemic.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>While most <a href="https://www.qld.gov.au/health/conditions/health-alerts/coronavirus-covid-19/take-action/coronavirus-prevention">states</a> and <a href="https://health.act.gov.au/hospitals-and-health-centres/canberra-hospital">territories</a> have issued similar advice, Tasmania has <a href="https://www.dhhs.tas.gov.au/hospital">closed all hospitals</a> to visitors after the recent coronavirus outbreak in the North West Regional Hospital in Burnie.</p>
<p>Hospitals in Tasmania will make exceptions for people visiting their partners at the birth of a child, parents visiting dependent children and for “compassionate and end-of-life reasons”. But a person visiting under any of these exemptions still needs to check with the hospital.</p>
<h2>Hospitals also have their own rules</h2>
<p>Hospitals around the country have also restricted visiting hours and numbers beyond what the health departments are mandating.</p>
<p>For instance, <a href="https://monashhealth.org/patients-visitors/coronavirus#visiting-monash-health">at our hospital</a> in Victoria, currently only one visitor per patient per day is allowed, and no children under 16. Visitors to our ICU are limited to a maximum of ten minutes whereas during labour one partner or support person can be there for 24 hours.</p>
<p>On entry, staff will screen you for symptoms and signs of COVID-19. This might be done by asking you a series of questions and/or checking your temperature.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-coronavirus-pandemic-is-forcing-us-to-ask-some-very-hard-questions-but-are-we-ready-for-the-answers-132581">The coronavirus pandemic is forcing us to ask some very hard questions. But are we ready for the answers?</a>
</strong>
</em>
</p>
<hr>
<p>So as the rules vary across states, territories, individual hospitals – and even different wards within a single hospital – check the latest restrictions for your state and hospital before planning a visit.</p><img src="https://counter.theconversation.com/content/135565/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Georgia Soldatos is PI on the ENDIA project. This research is supported by JDRF Australia, the recipient of the Commonwealth of Australia grant for Accelerated Research under the Medical Research Future Fund, and with funding from the Helmsley Charitable Trust. She is also the recipient of Monash Partners grants for two cystic fibrosis-related diabetes research projects.</span></em></p><p class="fine-print"><em><span>Barbora de Courten, Erwin Loh, and Maximilian de Courten 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>As the number of people hospitalised with COVID 19 rises, so do the number of people wanting to visit their sick loved ones. Who can visit?Maximilian de Courten, Professor in Global Public Health, Victoria UniversityBarbora de Courten, Professor and Specialist Physcian, Monash UniversityErwin Loh, Group Chief Medical Officer, St Vincent's Health Australia & Clinical Professor, Monash University, Monash UniversityGeorgia Soldatos, Adjunct Clinical Associate Professor, School Public Health and Preventative Medicine, Monash UniversityLicensed as Creative Commons – attribution, no derivatives.