{"id":4236,"date":"2021-11-02T00:43:32","date_gmt":"2021-11-01T23:43:32","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-ethics\/?p=4236"},"modified":"2021-11-02T00:43:32","modified_gmt":"2021-11-01T23:43:32","slug":"patients-reading-their-medical-notes-the-end-of-deceptive-placebos","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-ethics\/2021\/11\/02\/patients-reading-their-medical-notes-the-end-of-deceptive-placebos\/","title":{"rendered":"Patients reading their medical notes: the end of deceptive placebos?"},"content":{"rendered":"<p>By Charlotte Blease<\/p>\n<p>Martha* \u2013 not her real name \u2013 is 40 years old. For ten years \u2013 throughout her thirties \u2013 Martha experienced health changes: \u201cexcessive fatigue, tingling in my feet, and muscle tightness in my hands.\u201d\u00a0 These symptoms were serious enough for Martha to visit her GP. Various things were prescribed but no concrete diagnosis was offered.<\/p>\n<p>\u201cOne doctor told me it was \u2018wear and tear\u2019,\u201d says Martha, \u201csince I was aged 32 at the time, and my favourite pastimes were reading, TV, and films, this seemed quite a stretch\u201d.<\/p>\n<p>Over the years, increasingly worried by the symptoms, she visited a variety of GPs to try to get to the bottom of the symptoms.<\/p>\n<p>\u201cA different GP advised me to use a rolling pin on my feet, another told me to take Vitamin D tablets to ease the tingling,\u201d Martha recounts. \u201cI knew they didn\u2019t have a clue what was wrong, but nobody was honest about it.\u00a0 Feeling fobbed off made me wonder about my doctors\u2019 competence.\u201d<\/p>\n<p>\u201cThe final straw,\u201d says Martha, \u201cwas when one GP told me to take up jogging or other cardio exercise. She really wasn\u2019t listening to me when I explained the abnormal level of fatigue I was experiencing. Apparently, she thought it was psychosomatic, and even suggested I could just be depressed.\u201d Martha explains: \u201cVery politely, I told her I wasn\u2019t depressed. She insisted! In fact, I<em> did<\/em> end up leaving that appointment feeling very depressed that this was what a doctor had to offer.\u201d<\/p>\n<p>Martha\u2019s experiences are not unique. Many patients with medically unexplained symptoms are vulnerable to placebo<a href=\"https:\/\/www1.racgp.org.au\/ajgp\/2019\/december\/placebos-in-australian-general-practice\"> prescribing<\/a>. The term refers to interventions that are ineffective, or likely ineffective, for a condition or set of symptoms but are prescribed as if they might be effective. Studies show that placebos are<a href=\"https:\/\/journals.plos.org\/plosone\/article?id=10.1371\/journal.pone.0202211\"> common<\/a> in primary care. Or as one primary care doctor in a recent <a href=\"https:\/\/bpspsychub.onlinelibrary.wiley.com\/doi\/abs\/10.1111\/bjhp.12429\">survey<\/a> admitted, \u201cIt gets done all the time\u201d. Placebos might be used with good intentions \u2013 to offer the patient something rather than nothing, to instil hope, to damp down their worries, or even provide some therapeutic boost via placebo effects. But as Martha experienced, placebos risk derailing trust too.<\/p>\n<p>In a new paper co-authored with Dr Catherine DesRoches, we explore a new practice <a href=\"https:\/\/www.acpjournals.org\/doi\/abs\/10.7326\/M20-5370\">innovation<\/a> \u2013 sharing patient access to their electronic health records (so-called \u201copen notes\u201d). We ask: Might open notes reduce placebo prescribing, confining this vestige of paternalism to the past?<\/p>\n<p>A full decade after Martha\u2019s first GP visit, a chance encounter with a locum led to a referral and a diagnosis. After undergoing tests with a neurologist, Martha was told she had an inherited illness called myotonic muscular dystrophy. Her doctor was open and honest. He admitted that there was very little medicine could offer. Martha says, \u201cOn one level I was relieved. The symptoms were not \u2018in my head\u2019. We even laughed about the line of treatments I\u2019d been offered. But the specialist was also very clear: some high impact exercise could be dangerous.\u201d The placebos Martha was prescribed were not harm-free.<\/p>\n<p>\u201cAll I wanted was honesty,\u201d says Martha.<\/p>\n<p>Greater transparency could have strengthened trust. And offered online access to her clinical notes, could have empowered Martha to better collaborate with her GPs. In doing so, she might have got to the bottom of her symptoms faster.<\/p>\n<p>* Martha gave permission for this story to be used in this post in its anonymised form.<\/p>\n<p><strong>Paper title: <\/strong><a href=\"https:\/\/jme.bmj.com\/content\/early\/2021\/10\/26\/medethics-2021-107746?utm_source=alert&amp;utm_medium=email&amp;utm_campaign=jme&amp;utm_content=latest&amp;utm_term=01112021\">Open notes in patient care: Confining deceptive placebos to the past?<\/a><\/p>\n<p><strong>Author names: <\/strong>Charlotte Blease &amp; Catherine M. DesRoches<\/p>\n<p><strong>Affiliations: \u00a0<\/strong>General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, USA.<\/p>\n<p><strong>Competing interests: <\/strong>The authors declare no competing interests.<\/p>\n<p><strong>Social media accounts: <\/strong><a href=\"https:\/\/twitter.com\/crblease\">@crblease<\/a> <a href=\"https:\/\/twitter.com\/cmd418\">@cmd418<\/a><!--TrendMD v2.4.8--><\/p>\n","protected":false},"excerpt":{"rendered":"<p>By Charlotte Blease Martha* \u2013 not her real name \u2013 is 40 years old. For ten years \u2013 throughout her thirties \u2013 Martha experienced health changes: \u201cexcessive fatigue, tingling in my feet, and muscle tightness in my hands.\u201d\u00a0 These symptoms were serious enough for Martha to visit her GP. Various things were prescribed but no [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2021\/11\/02\/patients-reading-their-medical-notes-the-end-of-deceptive-placebos\/\">Read More&#8230;<\/a><\/p>\n","protected":false},"author":353,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[968],"tags":[],"class_list":["post-4236","post","type-post","status-publish","format-standard","hentry","category-clinical-ethics"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Patients reading their medical notes: the end of deceptive placebos? - Journal of Medical Ethics blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2021\/11\/02\/patients-reading-their-medical-notes-the-end-of-deceptive-placebos\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Patients reading their medical notes: the end of deceptive placebos? - Journal of Medical Ethics blog\" \/>\n<meta property=\"og:description\" content=\"By Charlotte Blease Martha* \u2013 not her real name \u2013 is 40 years old. For ten years \u2013 throughout her thirties \u2013 Martha experienced health changes: \u201cexcessive fatigue, tingling in my feet, and muscle tightness in my hands.\u201d\u00a0 These symptoms were serious enough for Martha to visit her GP. 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