{"id":2657,"date":"2018-05-04T16:43:35","date_gmt":"2018-05-04T16:43:35","guid":{"rendered":"https:\/\/tvndy.ca\/?p=2657"},"modified":"2018-10-24T14:45:06","modified_gmt":"2018-10-24T14:45:06","slug":"webcast-archive-new-study-on-euthanasia-of-people-with-intellectual-disabilities","status":"publish","type":"post","link":"https:\/\/tvndy.ca\/en\/2018\/05\/webcast-archive-new-study-on-euthanasia-of-people-with-intellectual-disabilities\/","title":{"rendered":"Webcast archive: New study on euthanasia of people with intellectual disabilities"},"content":{"rendered":"<p><iframe loading=\"lazy\" width=\"1180\" height=\"664\" src=\"https:\/\/www.youtube.com\/embed\/Oxreazn6vhc?feature=oembed\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" allowfullscreen><\/iframe><\/p>\n<p>In this episode of\u00a0<em>Euthanasia &amp; Disability<\/em>, Amy Hasbrouck, Christian Debray, and Taylor Hyatt discuss:<\/p>\n<ul>\n<li>New study on euthanasia of people with intellectual disabilities<\/li>\n<\/ul>\n<p>Please note that this text is only a script and that our webcast contains additional commentary.<\/p>\n<p><strong>NEW STUDY ON EUTHANASIA OF PEOPLE WITH INTELLECTUAL DISABILITIES<\/strong><\/p>\n<ul>\n<li>Last month,\u00a0<a href=\"https:\/\/bmcmedethics.biomedcentral.com\/articles\/10.1186\/s12910-018-0257-6#MOESM1\">a Dutch study<\/a>\u00a0was released discussing the difficulties of applying safeguards to euthanasia requests made by people with intellectual disabilities. The study examined nine case summaries provided by the euthanasia review committee (RTE) from 2012 to 2016, six people had an intellectual disability and three were autistic. The results were very similar to a study we featured on our webcast of\u00a0<a href=\"\/tvndy?p=2558\">February 16<\/a>\u00a0of this year.<\/li>\n<li>The study reviewed compliance with five of the \u201cdue care\u201d criteria required by law:\n<ul>\n<li><strong>The request must be \u201cvoluntary and well-considered.\u201d<\/strong>\u00a0The researchers found that capacity assessments were rushed or cut short. Eight summaries mentioned capacity assessments, and five of these contained only a blanket statement that the person had decision-making capacity, rather than applying the Appelbaum criteria for capacity to make medical decisions. That is:\n<ul>\n<li>The ability to understand information about one\u2019s condition;<\/li>\n<li>The ability to appreciate how that information applies to one\u2019s own situation;<\/li>\n<li>The ability to reason with that information, weigh the benefits and drawbacks of treatment options and make a choice;<\/li>\n<li>The ability to express that choice clearly once made.<\/li>\n<\/ul>\n<\/li>\n<li>In three cases, physicians disagreed or requested a second opinion. One person did not meet all of the capacity criteria but was found to have \u201coverall capacity\u201d anyway. One physician initially felt unable to assess capacity and the due care standard had not been met, but later accepted a psychiatrist\u2019s judgment that the person was capable.<\/li>\n<li>The study\u2019s authors found that \u201cThe RTE reports put a heavy emphasis on the \u2026 repeated nature of an [AS\/E] request, but for people with an intellectual disability, the difficulties with decision-making are more commonly in the area of \u2018appreciating the significance of the information\u2019 or \u2018reasoning with the information and weighing up treatment options.\u2019\u201d\u00a0 The Dutch authorities are setting a lower eligibility standard by not requiring patients to meet all the capacity criteria.<\/li>\n<li><strong>The person must face \u201cunbearable suffering without prospect of improvement.\u201d\u00a0<\/strong>A majority of the people had physical symptoms along with psychiatric disabilities and intellectual limitations.\u00a0 The researchers found that \u201cdifficulty in accepting or coping with changes in circumstances\u201d was blamed on the intellectual disability or autism and seen as a valid cause of \u201cunbearable suffering.\u201d\u00a0 The statement \u201ccure is no longer possible\u201d appeared in all nine case summaries. \u00a0The authors then question whether lifelong conditions should be seen as reason enough to justify assisted suicide and euthanasia (AS\/E), and the dangers that presents.<\/li>\n<li><strong>The person must be \u201cinformed of their prospects.<\/strong>\u201d Each case file contained a statement that \u201cthe physician had informed the patient sufficiently about his\/her situation.\u201d The case summaries gave no details about whether the information was provided in an accessible manner, or whether the doctors helped the people to understand the information or supported their decision-making process.<\/li>\n<li><strong>There must be no \u201creasonable alternative.<\/strong>\u201d Although a number of potential treatments had been tried, they were either \u201cineffective\u201d or not \u201cacceptable to the patient.\u201d Patient refusal or non-compliance was a common reason for physicians running out of treatment options, leading them to agree that the situation had become hopeless.\u00a0 The case summaries showed that there were communication problems, a lack of cooperation, trust and understanding, and even conflict, between doctors and patients. One person\u2019s doctor \u201cfelt that [euthanasia] was inappropriate,\u201d but alternative measures were refused. They sought a second professional who \u201cagreed that there were no treatment options left\u201d and approved the euthanasia request. \u00a0Another person referred to her doctor as \u201can oaf.\u201d<\/li>\n<li><strong>\u201cAt least one other independent physician\u201d must determine whether these four criteria have been met.<\/strong>\u00a0Typically, the consulting doctor would read the person\u2019s file and \u201c[visit] the patient once, between 5\u00a0weeks and 3\u00a0days before the euthanasia was carried out.\u201d These were not specialists in working with people with cognitive disabilities or autism, and one visit is not enough to establish trust and effective communication to ensure compliance with the due care criteria.<\/li>\n<\/ul>\n<\/li>\n<li>Many of the people in the study were dealing with social isolation. One person was \u201cin constant conflict\u201d with her loved ones, and the family of a second supported her entrance into a psychiatric hospital. A third person&#8217;s family was supposed to attend a consultation about her euthanasia; we don\u2019t know whether they participated. The other six people did not appear to have \u201cfamily, friends or partners.\u201d In one case, a mentor helped a person who was under guardianship to register with the country\u2019s End of Life Clinic when her own doctor refused her request.<\/li>\n<li>The RTEs accepted the physicians\u2019 assessments of patient suffering, prospects and capacity in all cases despite the difficulty of applying the due care criteria to people with intellectual disabilities or autism, and the possibility that the usual standards could have the unintended effect of putting vulnerable patients at risk.<\/li>\n<li>The authors also believe that capacity assessments should only be done by specialists in working with people with intellectual disabilities and autism, and they\u2019re unsure whether the available capacity assessment tools are even adequate to do the job. They are concerned that the bar for \u201cintractable suffering\u201d is set lower for people with an intellectual disability or autism.<\/li>\n<li>The study reveals something disability advocates have been trying to bring to the public\u2019s attention for years: physicians see major problems in their patients\u2019 lives, overlook their social origin and wrongly attribute them to a disability, then offer death as the solution. This cycle of prejudice will only continue to put disabled people\u2019s lives in danger.<\/li>\n<\/ul>\n   ","protected":false},"excerpt":{"rendered":"<div class=\"entry-summary\">\n<div class=\"entry-summary\">\nThis week, we&#8217;re looking at a study from the Netherlands about the euthanasia of people with intellectual disabilities, and the issues surrounding decision-making capacity.\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2018\/05\/webcast-archive-new-study-on-euthanasia-of-people-with-intellectual-disabilities\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: New study on euthanasia of people with intellectual disabilities&rdquo;<\/span>&hellip;<\/a><\/div>\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2018\/05\/webcast-archive-new-study-on-euthanasia-of-people-with-intellectual-disabilities\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: New study on euthanasia of people with intellectual disabilities&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":[215,121,214,216,118],"class_list":["post-2657","post","type-post","status-publish","format-standard","hentry","category-webcast-archive","tag-capacity","tag-euthanasia-disability","tag-intellectual","tag-study","tag-webcast","entry"],"_links":{"self":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/2657","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=2657"}],"version-history":[{"count":4,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/2657\/revisions"}],"predecessor-version":[{"id":3422,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/2657\/revisions\/3422"}],"wp:attachment":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/media?parent=2657"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/categories?post=2657"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/tags?post=2657"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}