{"id":4657,"date":"2019-12-06T15:00:30","date_gmt":"2019-12-06T15:00:30","guid":{"rendered":"https:\/\/tvndy.ca\/?p=4657"},"modified":"2019-12-10T21:25:38","modified_gmt":"2019-12-10T21:25:38","slug":"webcast-archive-special-edition","status":"publish","type":"post","link":"https:\/\/tvndy.ca\/en\/2019\/12\/webcast-archive-special-edition\/","title":{"rendered":"Webcast archive: Special edition"},"content":{"rendered":"<p><iframe loading=\"lazy\" width=\"1180\" height=\"664\" src=\"https:\/\/www.youtube.com\/embed\/Jdo5-Vib2LU?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<p>In this episode of\u00a0<em>Euthanasia &amp; Disability<\/em>, Amy Hasbrouck &amp; Christian Debray invite a group of advocates to discuss the state of euthanasia in Canada. The text of their remarks is below. Due to the nature of the conversation, the remarks of the other participants could not be captured in our script. However, CART transcription is available in the video.<\/p>\n<p><strong>WELCOME<\/strong><\/p>\n<ul style=\"font-weight: 400;\">\n<li>Today\u2019s webcast will be a discussion of some issues related to assisted suicide and euthanasia (AS\/E).<\/li>\n<li>TVNDY is a non-religious organization by and for people with disabilities and our allies.\u00a0 We believe that the choice to die is not free as long as old, ill and disabled people don\u2019t have a free choice in where and how they live, and that must change.<\/li>\n<li>As we said in our invitation, our goals for this meeting are to:\n<ul>\n<li>Learn about how the medical assistance in dying (MAiD) law is failing people with disabilities;<\/li>\n<li>Look at political and legal options to challenge or modify the MAiD law;<\/li>\n<li>Build a supportive community of people who\u2019ve faced pressure to end their lives.<\/li>\n<\/ul>\n<\/li>\n<li>We\u2019ll start by giving some case histories, and talk about euthanasia in Qu\u00e9bec.\u00a0 Then we\u2019ll move on to outline some of the political and legal options and finally talk about how to support each other. We\u2019ll invite comments and questions as we go along.<\/li>\n<li>Does anyone have anything they\u2019d like to add or a topic to suggest for another meeting down the road?<\/li>\n<\/ul>\n<p><strong>HOW THE MAID LAW IS FAILING PEOPLE WITH DISABILITIES<\/strong><\/p>\n<ul style=\"font-weight: 400;\">\n<li>We are concerned about three trends we\u2019ve observed in how the MAiD law is working in practice:\n<ul>\n<li>People facing social and economic pressures to request euthanasia<\/li>\n<li>Ineligible people being euthanized;<\/li>\n<li>Safeguards not being followed.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p><strong>News stories and case histories<\/strong><\/p>\n<ul style=\"font-weight: 400;\">\n<li>We want to start by giving some examples that we\u2019ve collected, and then ask you to comment on your experience.\n<ul>\n<li>In August we talked about the death of\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2019\/08\/webcast-archive-in-memoriam-sean-tagert-dies-us-bill-updates\/\">Sean Tagert<\/a>, a man with ALS who needed 24-hour support to live independently. The British Columbia health authorities would only provide 20 hours\/day, and suggested he move into an institution, far from his family. He believed death was preferable to the limitations of institutional life, and was euthanized in August.<\/li>\n<li><a href=\"https:\/\/tvndy.ca\/en\/2019\/09\/webcast-archive-family-of-british-columbia-man-contests-his-eligibility-for-euthanasia\/\">Alan Nichols<\/a>\u00a0was hospitalized in June after several distressing life changes led him to stop caring for himself. While in hospital, he made a request for euthanasia that was approved, and he died in July of this year. Mr. Nichols\u2019 family is trying to find out how he could be deemed eligible for MAiD without a \u201cgrievous and irremediable medical condition,\u201d but with a history of untreated depression.<\/li>\n<\/ul>\n<\/li>\n<li>As well, we recently discussed\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2019\/11\/webcast-archive-doctor-finds-problems-with-maid-compliance\/\">three case histories<\/a>\u00a0provided by Toronto doctor David D\u2019Souza:\n<ul>\n<li>Janice\u2019s\u00a0family asked Dr. D\u2019Souza to euthanize her when he visited her in a nursing home. Dementia had affected her ability to communicate and recognize her loved ones; her family showed him a 10-year-old will to prove she did not want to live with severe cognitive deficits.\u00a0 Dr. D\u2019Souza told the family that Janice was not eligible for euthanasia, because she must make the request (not her family) and she was not competent to consent when euthanasia was administered.<\/li>\n<li>Eddie\u00a0wanted to be euthanized as a way to \u201crelieve [his] suffering,\u201d after deciding to stop dialysis. Once Dr. D\u2019Souza arranged for palliative care, Eddie \u201cdied peacefully and comfortably, and of natural causes.\u201d<\/li>\n<li>Jim\u00a0wanted to be euthanized after discovering hardness in his abdomen, but without a definite diagnosis. After Dr. D\u2019Souza encouraged him to seek further tests and consultations (which he refused), he was found eligible by the MAID team at his local hospital. In a final meeting, Dr. D\u2019Souza found Jim and his family preparing for \u201cthe big event;\u201d his death by euthanasia.<\/li>\n<\/ul>\n<\/li>\n<li>Would anyone like to make a comment?<\/li>\n<\/ul>\n<p><strong>A summary of data from Qu\u00e9bec<\/strong><\/p>\n<ul style=\"font-weight: 400;\">\n<li>Though the interim reports on the federal MAiD law offer little detail, the\u00a0Commission on End-of-Life Care in Quebec has released four annual reports and a summary of euthanasia in that province since the practice began on December 10, 2015.\u00a0 (See our coverage of the\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2016\/12\/webcast-archive-quebecs-euthanasia-program-after-one-year\/\">first report<\/a>,\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2017\/11\/webcast-archive-review-of-canadian-disability-rights-legislation-manitoba\/\">second report<\/a>,\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2018\/12\/webcast-archive-palliative-care-study\/\">third report<\/a>,\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2019\/04\/webcast-archive-the-summary-report-on-end-of-life-care-in-quebec\/\">a summary report<\/a>, and the\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2019\/11\/webcast-archive-fourth-report-from-quebecs-commission-on-end-of-life-care\/\">fourth report<\/a>). The Qu\u00e9bec reports have provided some information, yet they contain inconsistencies and lack important details. It is also important to note that Qu\u00e9bec has a procedure for verifying the number of euthanasia by cross checking doctors\u2019 declarations of euthanasia against reports from institutions; this doesn&#8217;t exist in the federal monitoring system.\n<ul>\n<li>In Qu\u00e9bec, 2,909 euthanasia have been reported since December of 2015, while 2,947 Continuous Palliative Sedations have been documented.<\/li>\n<li>The Commission has recorded 15 euthanasia of people who were not eligible.<\/li>\n<li>In 64 cases, the Commission determined that safeguards were not respected.<\/li>\n<li>Of the declaration forms submitted to the Commission, 84 came in more than six months after euthanasia was provided. The Commission had to pursue doctors to get 60 euthanasia declaration forms in order to produce its summary report last spring. Eleven declarations were never produced.<\/li>\n<li>The summary report mentions \u201caround 20\u201d euthanasia that were not reported by doctors or facilities, but which came to light following audits by institutions; the euthanasia were identified through the pharmacy records.<\/li>\n<li>The number of requests was ten times more than anticipated before the program started; 65% were approved and euthanized.<\/li>\n<li>The average time between signing the request and administration of euthanasia was 12 days; 40% of euthanasia occurred within 10 days of the request.<\/li>\n<li>Euthanasia and CPS each account for 1.9% of deaths in Qu\u00e9bec between April 1, 2018 and March 31, 2019, for a total of nearly 4% of all deaths in the province.<\/li>\n<\/ul>\n<\/li>\n<li>Would anyone like to add a comment?<\/li>\n<\/ul>\n<p><strong>The Data Collection Form<\/strong><\/p>\n<ul style=\"font-weight: 400;\">\n<li>Last summer we developed a\u00a0data collection form to record people\u2019s stories in a more organized way, to get ready for the the five-year review of Canada\u2019s euthanasia law that was supposed to start next June. Since then, of course, the Truchon decision means Parliament will be modifying the MAiD law before then, and the study may be postponed indefinitely.<\/li>\n<li>Besides problems with the MAiD program, we\u2019re also looking at related life-ending practices, such as continuous palliative sedation (CPS), refusal to provide necessary medical care, and rushed judgments that continued care is futile.<\/li>\n<li>Would anyone like to comment?<\/li>\n<\/ul>\n<p><strong>POLITICAL AND LEGAL OPTIONS<\/strong><\/p>\n<ul style=\"font-weight: 400;\">\n<li>As you know, a Qu\u00e9bec Superior Court judge declared the \u201creasonably foreseeable\u201d natural death eligibility criterion unconstitutional in September.\u00a0 Since the attorney general did not appeal the\u00a0<em>Truchon<\/em>\u00a0decision, Parliament has until March 11, 2020 to modify the federal MAiD statute.\u00a0 The \u201cend-of-life\u201d requirement in the Qu\u00e9bec law was also struck down, and the provincial government has already announced plans to expand eligibility.<\/li>\n<li>The Council of Canadians with Disabilities (CCD) and the Canadian Association for Community Living (CACL) are meeting with the Attorney General\u2019s staff, Minister for Disability Inclusion Carla Qualtrough and the Health Minister about the AS\/E statute.\u00a0 Among the ideas being considered are:\n<ul>\n<li>Preserving an \u201cend-of-life\u201d criterion as a way to protect the equal right to live with dignity and respect;<\/li>\n<li>Defining \u201cexternal pressure\u201d to include socio-economic and other factors that lead to vulnerability;<\/li>\n<li>Making the Vulnerable Persons Standard\u00a0<a href=\"http:\/\/www.vps-npv.ca\/\">(VPS)<\/a>\u00a0part of a formal capacity assessment process.<\/li>\n<\/ul>\n<\/li>\n<li>At the same time, Parliament and Qu\u00e9bec\u2019s National Assembly are facing a lot of pressure from pro-euthanasia activists to\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2019\/01\/webcast-archive-the-cca-reports-part-i-overarching-problems\/\">expand eligibility<\/a>, specifically to:\n<ul>\n<li><a href=\"https:\/\/tvndy.ca\/en\/2019\/02\/webcast-archive-the-cca-reports-part-iii-mature-minors\/\">Children<\/a>\u00a0under 18 years old;<\/li>\n<li>People with\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2019\/01\/webcast-archive-the-cca-reports-part-ii-advance-requests\/\">dementia<\/a>, via advance directives;<\/li>\n<li>People who want euthanasia for\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2019\/02\/webcast-archive-the-cca-reports-part-iv-mental-disorders\/\">psychological reasons<\/a>.<\/li>\n<\/ul>\n<\/li>\n<li>Are there any other political initiatives people would like to mention?<\/li>\n<li>On the legal front, there are a couple of claims still pending.\n<ul>\n<li>The best-known was brought by\u00a0<a href=\"http:\/\/assistedlife.ca\/\">Roger Foley<\/a>\u00a0against the Ontario government and others when he was denied self-directed personal assistance services, was endangered by the negligence of home-health agency workers, was \u201coffered\u201d euthanasia and harassed by hospital staff.\u00a0 Mr. Foley also filed a\u00a0<a href=\"https:\/\/www.canada.ca\/en\/canadian-heritage\/services\/human-rights-complaints\/international.html\">complaint<\/a>\u00a0under the UN Convention on the Rights of Persons with Disabilities, which led to a meeting with the Special Rapporteur in\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2019\/04\/webcast-archive-united-nations-special-rapporteur-on-the-rights-of-people-with-disabilities\/\">April<\/a>\u00a0of this year.<\/li>\n<li>In a related case, nursing home residents in Qu\u00e9bec led by\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2018\/09\/webcast-archive-long-term-care-in-quebec\/\">Daniel Pilote<\/a>\u00a0have filed a\u00a0<a href=\"https:\/\/tvndy.ca\/en\/2019\/09\/webcast-archive-details-on-the-truchon-decision\/\">class action<\/a>\u00a0over unsafe and inhumane conditions in long-term care facilities.<\/li>\n<li>Other possible legal actions we\u2019ve heard about:\n<ul>\n<li>A wrongful death claim, brought by the family of Alan Nichols;<\/li>\n<li>A demand for access to palliative care, brought by Ing Wong Ward and her husband;<\/li>\n<li>A claim for access to self-directed personal assistance services (with Heidi Janz).<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<li>The United Nations\u00a0<a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html#Fulltext\">Convention<\/a>\u00a0on the Rights of Persons with Disabilities guarantees certain rights that are directly related to AS\/E.\n<ul>\n<li>Article 10\u00a0\u2013 Right to life. States parties:\n<ul>\n<li>\u201creaffirm &#8230; the inherent right to life\u201d<\/li>\n<li>\u201cand shall take all necessary measures to ensure its\u00a0effective enjoyment by persons with disabilities on an equal basis with others.\u201d<\/li>\n<\/ul>\n<\/li>\n<li>Article 19\u00a0\u2013 Living independently and being included in the community. \u201c<em>(b)<\/em>\u00a0\u201cPersons with disabilities have access to a range of in-home, \u2026 services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation.\u201d<\/li>\n<li>Article 25 \u2013 Health.\u00a0\u201cPersons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination,\u201d including:\n<ul>\n<li>\u201c<em>(b)<\/em>\u00a0\u2026 those health services needed by persons with disabilities specifically because of their disabilities,\u201d<\/li>\n<li>\u201c<em>(f)<\/em>\u00a0Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.\u201d<\/li>\n<\/ul>\n<\/li>\n<li><a href=\"https:\/\/social.un.org\/ageing-working-group\/documents\/ninth\/Joint_Discussion_paper.pdf\">Palliative care<\/a>\u00a0is addressed in other UN human rights documents.<\/li>\n<li>The Optional Protocol allows individuals to bring\u00a0<a href=\"https:\/\/www.canada.ca\/en\/canadian-heritage\/services\/human-rights-complaints\/international.html\">complaints<\/a>\u00a0(called \u201ccommunications\u201d) under the Convention.<\/li>\n<\/ul>\n<\/li>\n<li>Does anyone have anything they\u2019d like to add?<\/li>\n<\/ul>\n<p><strong>BUILD A SUPPORTIVE COMMUNITY<\/strong><\/p>\n<ul style=\"font-weight: 400;\">\n<li>Despite the best intentions, the message \u201cbetter dead than disabled\u201d is very damaging.<\/li>\n<li>The message is everywhere.<\/li>\n<li>It helps to talk about it sometimes, to hear about what others are doing, to commiserate and share the occasional success.<\/li>\n<\/ul>\n   ","protected":false},"excerpt":{"rendered":"<div class=\"entry-summary\">\n<div class=\"entry-summary\">\nA commentary on a number of current issues that we think should inform the review of the law &#8211; featuring the Nichols family, Jonathan Marchand, Heidi Janz and other advocates\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2019\/12\/webcast-archive-special-edition\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: Special edition&rdquo;<\/span>&hellip;<\/a><\/div>\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2019\/12\/webcast-archive-special-edition\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: Special edition&rdquo;<\/span>&hellip;<\/a><\/div>\n","protected":false},"author":2,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[92],"tags":[585,590,662,121,579,53,196,560,599,661,118],"class_list":["post-4657","post","type-post","status-publish","format-standard","hentry","category-webcast-archive","tag-alan-nichols","tag-daniel-pilote-en","tag-dr-david-dsouza","tag-euthanasia-disability","tag-heidi-janz-en","tag-quebec-en","tag-roger-foley","tag-sean-tagert-en","tag-united-nations-en","tag-vulnerable-person-standard","tag-webcast","entry"],"_links":{"self":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4657","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/comments?post=4657"}],"version-history":[{"count":5,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4657\/revisions"}],"predecessor-version":[{"id":4675,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4657\/revisions\/4675"}],"wp:attachment":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/media?parent=4657"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/categories?post=4657"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/tags?post=4657"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}