{"id":22565,"date":"2023-03-16T09:00:48","date_gmt":"2023-03-16T13:00:48","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=22565"},"modified":"2023-05-18T20:26:52","modified_gmt":"2023-05-19T00:26:52","slug":"mighty-casey-is-entering-hospice","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2023\/03\/mighty-casey-is-entering-hospice.html","title":{"rendered":"Mighty Casey is entering hospice"},"content":{"rendered":"<p><em>Update 3\/19: We&#8217;ve opened <a href=\"https:\/\/www.caringbridge.org\/visit\/caseyquinlan\" target=\"_blank\" rel=\"noopener\">a CaringBridge page for Casey<\/a>, where her support team will post updates. You can subscribe to get notifications and to leave words of support, memories, etc. Anyone can view; posting requires free registration.<\/em><\/p>\n<hr \/>\n<p>This news hit us worse than a lightning bolt on Sunday 3\/12. Friends of Casey Quinlan (<a href=\"http:\/\/twitter.com\/mightycasey\" target=\"_blank\" rel=\"noopener\">@MightyCasey<\/a>) have known she was coping with a recurrence of her breast cancer, and it wasn&#8217;t going well. But on Sunday she told breast cancer health data activist Andrea Downing that she&#8217;s going to enter hospice.<\/p>\n<p>This is simply not possible. Invincible heroes and sheroes do not die. But, as they say, cancer sucks.<\/p>\n<p>If you don&#8217;t already know Casey, here&#8217;s the whole picture in ten minutes. As you&#8217;ll see, no text description could possibly capture the Casey experience.<\/p>\n<p>&nbsp;<\/p>\n<p><span class=\"embed-youtube\" style=\"text-align:center; display: block;\"><iframe loading=\"lazy\" class=\"youtube-player\" width=\"1080\" height=\"608\" src=\"https:\/\/www.youtube.com\/embed\/jISrpXAcUHg?version=3&#038;rel=1&#038;showsearch=0&#038;showinfo=1&#038;iv_load_policy=1&#038;fs=1&#038;hl=en-US&#038;autohide=2&#038;start=589&#038;wmode=transparent\" allowfullscreen=\"true\" style=\"border:0;\" sandbox=\"allow-scripts allow-same-origin allow-popups allow-presentation allow-popups-to-escape-sandbox\"><\/iframe><\/span><\/p>\n<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2023\/03\/Casey-Gilles-tattoo.jpg\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\" wp-image-22564 alignright\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2023\/03\/Casey-Gilles-tattoo.jpg\" alt=\"Photo of Casey at Medicine X, 2013\" width=\"192\" height=\"288\" \/><\/a>[If you didn&#8217;t watch the video, <a href=\"https:\/\/cancerforchristmas.com\/qr-code-tattoo\/#unique-identifier\" target=\"_blank\" rel=\"noopener\">here&#8217;s the story<\/a> of the QR code she had tattooed onto her sternum. It links to her online medical record, as a protest against healthcare&#8217;s lack of interoperable records. At right is a full photo.]<\/p>\n<p>We&#8217;ll have more to say about Casey soon. (&#8220;I ain&#8217;t dead yet!,&#8221; she says with characteristic decorum.) For now here are a few high-level points of her interaction with healthcare globally (beyond the video) that illustrate why so many are hit so hard by this news.<\/p>\n<ul>\n<li>Describes herself as &#8220;a warrior &#8211; descended from admirals&#8221; (literally &#8211; her grandfather and another relative)<\/li>\n<li>Former network news video wizard (one of those people in the van on the street) and stand-up comedian<\/li>\n<li>Active in the <a href=\"https:\/\/lowninstitute.org\/\" target=\"_blank\" rel=\"noopener\">Lown Institute<\/a>&#8216;s healthcare work (social responsibility) and the <a href=\"https:\/\/rightcarealliance.org\/\" target=\"_blank\" rel=\"noopener\">Right Care Alliance<\/a><\/li>\n<li>Famously &#8220;flamboyant&#8221; personality (and vocabulary)<\/li>\n<li>Part of\u00a0<a href=\"https:\/\/lightcollective.org\/\" target=\"_blank\" rel=\"noopener\">The Light Collective<\/a>, for &#8220;the collective rights, interests, and voices of patient communities in health tech.&#8221;<\/li>\n<li>Much work on Shared Decision Making at The Dartmouth Institute and elsewhere, including the Cochrane Collaborative on high quality evidence<\/li>\n<li>A key person in developing the <a href=\"https:\/\/patientsincluded.org\/\" target=\"_blank\" rel=\"noopener\">Patients Included<\/a> charters<\/li>\n<li><a href=\"https:\/\/www.patreon.com\/mightycasey\" target=\"_blank\" rel=\"noopener\">Healthcare is Hilarious<\/a> podcast<\/li>\n<li>Master of popular culture and many outrageous memes<\/li>\n<li>And much more.<\/li>\n<\/ul>\n<h3>To spread the word on social media:<\/h3>\n<ul>\n<li><a href=\"https:\/\/twitter.com\/ePatientDave\/status\/1636353996154609664\" target=\"_blank\" rel=\"noopener\">My tweet<\/a> about this post and <a href=\"https:\/\/www.linkedin.com\/feed\/update\/urn:li:activity:7042124953470541824\" target=\"_blank\" rel=\"noopener\">the SPM LinkedIn post<\/a><\/li>\n<li>The <a href=\"https:\/\/twitter.com\/BraveBosom\/status\/1635007067168837638\" target=\"_blank\" rel=\"noopener\">original tweet about Casey&#8217;s status<\/a> (with less info but hundreds of replies and RTs) and the <a href=\"https:\/\/www.linkedin.com\/posts\/epatientdave_bcsm-breastcancer-hospice-activity-7040848794023821312-XjPc\" target=\"_blank\" rel=\"noopener\">matching post on LinkedIn<\/a>.<\/li>\n<li>Direct link to <a href=\"https:\/\/participatorymedicine.org\/epatients\/2023\/03\/mighty-casey-is-entering-hospice.html\" target=\"_blank\" rel=\"noopener\">this post<\/a><\/li>\n<\/ul>\n<p>For now, here&#8217;s one of her two jackets in Regina Holliday&#8217;s <a href=\"https:\/\/vimeo.com\/80009527\" target=\"_blank\" rel=\"noopener\">Walking Gallery of Healthcare<\/a>. Painted in 2015, it was a response to hospitals who didn&#8217;t want to be forced to let patients get at their data, much less\u00a0<em>help\u00a0<\/em>patients do so. A regulation was proposed that would require x% of a hospital&#8217;s patients to use the new EMR systems, but the hospital industry got it watered down so that only\u00a0<em>one\u00a0<\/em>patient would be required, to satisfy Federal regulations.<\/p>\n<p>Casey&#8217;s response was titled &#8220;I got your one patient here,&#8221; quoting &#8220;The Dude&#8221; (Jeff Bridges) in &#8220;The Big Lebowski&#8221;:<\/p>\n<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2023\/03\/Casey-Quinlan-one-patient-walking-gallery-jacket.jpeg\" data-rel=\"lightbox-image-1\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-22569 aligncenter\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2023\/03\/Casey-Quinlan-one-patient-walking-gallery-jacket.jpeg\" alt=\"\" width=\"690\" height=\"900\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2023\/03\/Casey-Quinlan-one-patient-walking-gallery-jacket.jpeg 690w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2023\/03\/Casey-Quinlan-one-patient-walking-gallery-jacket-480x626.jpeg 480w\" sizes=\"auto, (min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 690px, 100vw\" \/><\/a><\/p>\n<p>Of course now we all know that our movement won, on this point: as of last October 6, all patient data must be available not just online for patient viewing, but for downloading as well.<\/p>\n<p>A warrior, indeed. More to follow.<\/p>\n<p><em>If you have Casey stories to share, put &#8217;em in comments.<br \/>\n<\/em>__________<\/p>\n<p><em>Photo credits: Casey at Medicine-X 2013 by SPM co-founder Gilles Frydman; Walking Gallery jacket by Regina Holliday.<\/em><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Update 3\/19: We&#8217;ve opened a CaringBridge page for Casey, where her support team will post updates. You can subscribe to get notifications and to leave words of support, memories, etc. [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":22586,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[8326,35,367,3],"tags":[],"coauthors":[8070],"class_list":["post-22565","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cancer","category-key-people","category-medical-records","category-pts-as-teachers"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Mighty Casey is entering hospice - SPM Blog<\/title>\n<meta name=\"description\" content=\"Casey&#039;s friends have known her breast cancer was back and it wasn&#039;t going well. 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