{"id":4072,"date":"2019-02-01T14:56:44","date_gmt":"2019-02-01T14:56:44","guid":{"rendered":"https:\/\/tvndy.ca\/?p=4072"},"modified":"2019-03-22T13:46:27","modified_gmt":"2019-03-22T13:46:27","slug":"webcast-archive-the-cca-reports-part-iii-mature-minors","status":"publish","type":"post","link":"https:\/\/tvndy.ca\/en\/2019\/02\/webcast-archive-the-cca-reports-part-iii-mature-minors\/","title":{"rendered":"Webcast archive: The CCA Reports \u2013 Part III \u2013 Mature minors"},"content":{"rendered":"<p><iframe loading=\"lazy\" width=\"1180\" height=\"664\" src=\"https:\/\/www.youtube.com\/embed\/s4B_bW2ROfs?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, Christian Debray, and Taylor Hyatt discuss:<\/p>\n<ul>\n<li>The CCA Reports \u2013 Part III \u2013 Mature minors<\/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>THE CCA REPORTS: SOMETHING ABOUT US WITHOUT US \u2013 PART III: MATURE MINORS<\/strong><\/p>\n<ul>\n<li>Today, we\u2019re continuing our series on the Council of Canadian Academies reports with the document on \u201c<a href=\"https:\/\/www.scienceadvice.ca\/wp-content\/uploads\/2018\/12\/The-State-of-Knowledge-on-Medical-Assistance-in-Dying-for-Mature-Minors.pdf\">mature minors<\/a>.\u201d<\/li>\n<li>There are two &#8220;elephants in the room&#8221; that we believe lower the value of this report.\u00a0 They are:\n<ul>\n<li>The report does not address the problems of suicide, and risky behaviour causing accidental death among teenagers; and<\/li>\n<li>Abuse and \u201cmercy killing\u201d of disabled children are ignored.<\/li>\n<\/ul>\n<\/li>\n<li>Teenage suicide and risky behaviour are a well-documented problem:\n<ul>\n<li>This is mentioned in the context of \u201c[indigenous] communities experiencing youth suicide crises.\u201d (p. 29);<\/li>\n<li>On page 92, the report has a chart showing that accidents and suicide are the leading cause of death among adolescents 15 to 19 years old.\n<ul>\n<li>26% die by suicide \/ self-harm;<\/li>\n<li>33% die by accidents;<\/li>\n<li>That\u2019s nearly 60% of adolescent deaths that can be tied to risky or self-destructive behaviour, yet the report does not discuss these factors in the context of end-of-life decision-making, except to claim that MAID is not an \u201cimpulsive\u201d choice.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<li>The other &#8220;elephant in the room&#8221; is the link between AS\/E and mercy killing, where the belief that a disabled child is \u201cbetter off dead\u201d is put into action by parents who kill their children.\n<ul>\n<li>Not only did the authors fail to discuss the homicide of Tracy Latimer by her father, they also ignore the public support he received for killing her, and the devaluation of disabled lives signaled by that approval.<\/li>\n<li>The 2016 case of Jerika Bolen was raised in the submission by TVNDY because we believe it is a prime example of why adolescents are not in a position to make life-or-death decisions for themselves, and how society reacts inappropriately when disabled children ask to die.\u00a0 However the working group chose not to discuss the Bolen case.\u00a0 Jerika was a 14-year-old girl with spinal muscular atrophy who had undergone multiple surgeries and, from reports, did not appear to have good pain management. She gained widespread public media attention for her fundraising campaign for a \u201clast dance\u201d before she had her ventilator turned off in order to die.\u00a0 Her request shows the kind of immaturity adolescents are known for: strong emotional reactions, attention and reward-seeking behaviour, and melodrama &#8211; in addition to her suicidal feelings.\u00a0 The public response to her campaign was nothing less than a crowd shouting \u201cjump!\u201d to a suicidal teenager on a high ledge.<\/li>\n<li>The Working Group observed that young people, their parents and doctors \u201cusually\u201d cooperate to make medical decisions (p. 35).\u00a0 This is at odds with the finding of the Canadian Paediatric Society that \u201cparental requests for MAID for their children outnumber requests by minors themselves by five to one,\u201d (p. 110).\u00a0 (This statistic appears in a section entitled \u201cThe Number of MAID Requests by Mature Minors Is Likely to Be Small.\u201d Don\u2019t worry, be happy!)<\/li>\n<li>The report doesn\u2019t question the assumption that parents do everything possible to save their children. (pp. 142, 151) despite proof to the contrary.<\/li>\n<\/ul>\n<\/li>\n<li>The working group distinguishes between age cut-offs in \u201cnon-medical contexts\u201d (such as voting, driving, smoking and using alcohol) from medical decision-making, claiming that \u201cunlike in [the non-medical] contexts, denying someone the ability to make healthcare decisions has potential implications for their bodily integrity.\u201d\u00a0 Yet wouldn\u2019t smoking, driving and using alcohol all have an impact on \u201cbodily integrity\u201d &#8211; not only of the person themselves, but of others as well? (p. 38)<\/li>\n<li>As we\u2019ve talked about before, to have legal capacity, a person must be able to understand and appreciate the information about a particular decision, and the consequences of each possible choice.\n<ul>\n<li>This standard was created to govern health care decisions, like whether to have a tumour or a whole breast removed &#8211; not the choice to live or die.<\/li>\n<li>These are functions related to thinking that don\u2019t take into account emotional and judgment factors that affect teenagers.<\/li>\n<\/ul>\n<\/li>\n<li>There is no universally accepted definition of a mature minor; Canadian common law, health care statutes and policy generally view a mature minor as:\n<ul>\n<li>a person aged 12 to 18;<\/li>\n<li>with the capacity to make an informed healthcare decision, and<\/li>\n<li>the ability to\u00a0<u>act voluntarily<\/u>\u00a0with respect to that decision (p. 36).<\/li>\n<\/ul>\n<\/li>\n<li>Factors considered by courts in deciding if a child can make a decision: (p. 34)\n<ul>\n<li>the minor\u2019s understanding and appreciation of what is proposed;<\/li>\n<li>their ability to make a\u00a0<u>voluntary choice<\/u>;<\/li>\n<li>the gravity of the treatment decision;<\/li>\n<li>whether the treatment will save the person\u2019s life;<\/li>\n<li>the side effects of the treatment;<\/li>\n<li>what alternatives are available;<\/li>\n<li>whether there is a provincial or territorial healthcare consent statute or child welfare law that applies; and<\/li>\n<li>legal standards, such as\n<ul>\n<li>the \u201cbest interest\u201d of the child, and<\/li>\n<li>\u201cparens patriae,\u201d where the state steps in and takes the role of the parent (p. 51).<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<li>What does \u201cvoluntary\u201d mean as it relates to decisions taken by disabled teenagers?\u00a0 The report rightly notes that adolescents are generally dependent on their parents for food, shelter, clothing, transportation and recreation.\n<ul>\n<li>The report doesn\u2019t discuss that ill and disabled teenagers may be much more dependent on their parents (siblings and others), for help with personal care (transfers from bed to wheelchair, toileting, dressing, bathing, eating), household chores and other daily activities, medical and therapy appointments, maintenance of prostheses and medical devices, negotiating with schools over education plans, etc. etc.<\/li>\n<li>Such a high level of dependence will affect the child\u2019s ability to assert their independence in making any kind of decision, let alone if they feel they are a \u201cburden\u201d on their families.<\/li>\n<\/ul>\n<\/li>\n<li>What does it mean when we talk about the \u201cbest interest of the child\u201d\n<ul>\n<li>Is this the standard defined by the medical model? \u00a0Is it defined by parents who may not have adequate supports?\u00a0 Is it defined according to a discriminatory view of the quality of life with a disability?<\/li>\n<li>Or is it defined by people who live well with that disability and have the services and supports they need to participate on an equal basis in their communities?<\/li>\n<\/ul>\n<\/li>\n<li>The report presents studies showing that adolescents have the intellectual ability to make medical decisions, but that other brain functions related to decision-making take longer to develop.\u00a0 Adolescents and young adults often have problems with:\n<ul>\n<li>impulse control and risk-taking behaviour;<\/li>\n<li>strong emotional reactions;<\/li>\n<li>increased reward-seeking and self-stimulating behaviour;<\/li>\n<li>complex decision-making processes, planning ahead, weighing risks and benefits;<\/li>\n<li>suicidal thoughts and feelings, and self-harming behaviours.<\/li>\n<\/ul>\n<\/li>\n<li>So what is maturity?\u00a0 The report cites court cases that mention different indicators:\n<ul>\n<li>an understanding that death is permanent, and not just \u201cgoing to sleep.\u201d (p. 63);<\/li>\n<li>experience with making decisions.\u00a0 Over-protected disabled people may have been deprived of opportunities to practice in real-world situations (p. 41).<\/li>\n<li>It\u2019s worth asking; is maturity the same as complying with the family\u2019s or society\u2019s expectations for what a disabled or terminally ill person would want?<\/li>\n<\/ul>\n<\/li>\n<li>On page 47, the report refers to the \u201cproposed treatment.\u201d But AS\/E are not supposed to be \u201cproposed\u201d by anyone but the person who would die.<\/li>\n<li>Section 4.3.2 is entitled \u201cEvaluating the Maturity of Minors Adds a Layer of Scrutiny that Is Not Typically Invoked for Adults.\u201d\u00a0 It seems to us that this is the level of scrutiny that should be used for everyone, regardless of age.\u00a0 In fact, even the plaintiffs in the\u00a0<em>Carter<\/em>\u00a0case had originally imagined a tougher assessment process than we have now, including a mandatory psychiatric evaluation with eligibility determined by a three-person expert panel (see\u00a0<em><a href=\"https:\/\/www.courts.gov.bc.ca\/jdb-txt\/SC\/12\/08\/2012BCSC0886cor1.htm\">Carter<\/a>,<\/em>\u00a0paras 873-881).<\/li>\n<li>On page 87, the report claims to have shown \u201cthat autonomous healthcare decision-making can incorporate the relationships of young patients with their parents\/guardians and others who are significant to them.\u201d\u00a0 This would be great if it were true, but the report:\n<ul>\n<li>fails to factor in the effects of disability discrimination on the person and their relationships with family and medical staff;<\/li>\n<li>does little to acknowledge and guard against negative attitudes about disability and abuse of disabled people; and<\/li>\n<li>discounts the emotional and developmental issues that affect the decision-making abilities of young people.<\/li>\n<\/ul>\n<\/li>\n<li>In our overview of the reports, we talked about the consequences of excluding disabled people from the working groups that examined the evidence and debated the issue.\u00a0 Though the mature minors report did acknowledge this lack (p. 152) and include interviews with three \u201cyouth leaders&#8221; (pp. 122-123), the lack of disability input affects the content of the report:\n<ul>\n<li>The report rightly recognizes First Nations members\u2019 mistrust of the medical community, while saying little about the very good reasons disabled people are wary of the health care system;<\/li>\n<li>The report properly highlights the long-term impact of abuse of indigenous people in residential schools, while saying little about the potential effects of abuse of disabled people both in institutional settings, and in their families of origin.<\/li>\n<li>The authors failed to note the importance of the fact that two of the three Belgian cases of mature minors who were killed in the last three years had chronic disabilities (muscular dystrophy and cystic fibrosis) (p. 113).<\/li>\n<li>The Working Group ignores the impact of disability discrimination on creating the conditions that lead to requests for AS\/E. The statement to the effect that \u201cdisability should be understood as an interplay between a person\u2019s impairments and the physical and social accommodations available in their environment\u201d (pp. 126, 148) doesn\u2019t take prejudice and discrimination into account.<\/li>\n<\/ul>\n<\/li>\n<li>The report doesn\u2019t raise the possibility that depression or other mental illness may co-occur with disability or terminal illness as the impetus for the AS\/E request. \u00a0Nor does the report acknowledge the external origin of emotional problems caused by oppression:\n<ul>\n<li>peer pressure to conform to a non-disabled norm,<\/li>\n<li>physical and sexual abuse,<\/li>\n<li>devaluation (causing low self-esteem),<\/li>\n<li>over-protection,<\/li>\n<li>low-expectations,<\/li>\n<li>bullying,<\/li>\n<li>feelings of powerlessness in the face of painful and invasive medical procedures, and<\/li>\n<li>isolation from peers and siblings.<\/li>\n<\/ul>\n<\/li>\n<li>The Mature Minors report advocates the rights of children to participate in making decisions that affect their lives, without taking into account the internal and external factors that can impair that process.\u00a0 As in the other reports, the working group is basing their analysis on a best-case scenario, whereas in the real world, children with degenerative illness and disabilities may be making such decisions under the influence of high levels of dependence, physical and emotional abuse, the impact of negative views of disability on their self-esteem, the stress of isolation, painful medical procedures, peer pressure and bullying, and the ordinary developmental difficulties of adolescence.\u00a0 Is it wise to base life-ending policy on a best-case scenario that may, in fact, occur only rarely?\u00a0 Can we really say that a child subject to these pressures, regardless of how solemn, compliant and mature they appear, is making a free, informed and voluntary choice?\u00a0 Isn\u2019t it our duty as a society to recognize and solve the problems facing adolescents and their families, rather than pretending that ill and disabled children are universally loved and treasured by parents who have the supports they need to care for all their children?<\/li>\n<\/ul>\n   ","protected":false},"excerpt":{"rendered":"<div class=\"entry-summary\">\n<div class=\"entry-summary\">\nToday, we&#8217;re looking at the Council of Canadian Academies report on mature minors and the underappreciated challenges of growing up with a disability.\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2019\/02\/webcast-archive-the-cca-reports-part-iii-mature-minors\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: The CCA Reports \u2013 Part III \u2013 Mature minors&rdquo;<\/span>&hellip;<\/a><\/div>\n<\/div>\n<div class=\"link-more\"><a href=\"https:\/\/tvndy.ca\/en\/2019\/02\/webcast-archive-the-cca-reports-part-iii-mature-minors\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &ldquo;Webcast archive: The CCA Reports \u2013 Part III \u2013 Mature minors&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":[177,475,215,256,476,121,473,456,118],"class_list":["post-4072","post","type-post","status-publish","format-standard","hentry","category-webcast-archive","tag-abuse","tag-adolescents","tag-capacity","tag-council-of-canadian-academies","tag-decisionmaking","tag-euthanasia-disability","tag-jerika-bolen","tag-mature-minors","tag-webcast","entry"],"_links":{"self":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4072","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=4072"}],"version-history":[{"count":4,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4072\/revisions"}],"predecessor-version":[{"id":4148,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/posts\/4072\/revisions\/4148"}],"wp:attachment":[{"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/media?parent=4072"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/categories?post=4072"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/tvndy.ca\/en\/wp-json\/wp\/v2\/tags?post=4072"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}