Introduction

Webcast archive: The CCA Reports – Part III – Mature minors

Today, we're looking at the Council of Canadian Academies report on mature minors and the underappreciated challenges of growing up with a disability.

Webcast archive: The CCA Reports – Part III – Mature minors

In this episode of Euthanasia & Disability, Amy Hasbrouck, Christian Debray, and Taylor Hyatt discuss:

  • The CCA Reports – Part III – Mature minors

Please note that this text is only a script and that our webcast contains additional commentary.

THE CCA REPORTS: SOMETHING ABOUT US WITHOUT US – PART III: MATURE MINORS

  • Today, we’re continuing our series on the Council of Canadian Academies reports with the document on “mature minors.”
  • There are two elephants in the living room that we believe lower the value of this report.  They are:
    • The report does not address the problems of suicide, and risky behaviour causing accidental death among teenagers; and
    • Abuse and “mercy killing” of disabled children are ignored.
  • Teenage suicide and risky behaviour are a well-documented problem:
    • This is mentioned in the context of “[indigenous] communities experiencing youth suicide crises.” (p. 29);
    • 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.
      • 26% die by suicide / self-harm;
      • 33% die by accidents;
      • That’s 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 “impulsive” choice.
  • The other elephant in the room is the link between AS/E and mercy killing, where the belief that a disabled child is “better off dead” is put into action by parents who kill their children.
    • 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.
    • 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.  However the working group chose not to discuss the Bolen case.  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 “last dance” before she had her ventilator turned off in order to die.  Her request shows the kind of immaturity adolescents are known for: strong emotional reactions, attention- and reward-seeking behaviour, melodrama, in addition to her suicidal feelings.  The public response to her campaign was nothing less than a crowd shouting “jump!” to a suicidal teenager on a high ledge.
    • The working group observed that young people, their parents and doctors “usually” cooperate to make medical decisions (p. 35).  This is at odds with the finding of the Canadian Paediatric Society that “parental requests for MAID for their children outnumber requests by minors themselves by five to one,” (p. 110).  (This statistic appears in a section entitled “The Number of MAID Requests by Mature Minors Is Likely to Be Small” (don’t worry, be happy).)
    • The report doesn’t question the assumption that parents do everything possible to save their children. (142, 151) despite proof to the contrary.
  • The working group distinguishes between age cut-offs in “non-medical contexts” (such as voting, driving, smoking and using alcohol) from medical decision-making, claiming that “unlike in [the non-medical] contexts, denying someone the ability to make healthcare decisions has potential implications for their bodily integrity.”  Yet wouldn’t smoking, driving and using alcohol all have an impact on the “bodily integrity” not only of the person themselves, but of others as well? (p. 38).
  • As we’ve 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.
    • This standard was created to govern health care decisions, like whether to have a tumour or a whole breast removed, not the choice to live or die.
    • These are functions related to thinking that don’t take into account emotional and judgment factors that affect teenagers.
  • There is no universally accepted definition of a mature minor; Canadian common law, health care statutes and policy generally view a mature minor as:
    • a person aged 12 to 18;
    • with the capacity to make an informed healthcare decision, and
    • the ability to act voluntarily with respect to that decision (p. 36).
  • Factors considered by courts in deciding if a child can make a decision: (p. 34)
    • the minor’s understanding and appreciation of what is proposed;
    • their ability to make a voluntary choice;
    • the gravity of the treatment decision;
    • Whether the treatment will save the person’s life;
    • The side effects of the treatment;
    • What alternatives are available;
    • Whether there is a provincial or territorial healthcare consent statute or child welfare law that applies; and
    • Legal standards, such as
      • The “best interest” of the child, and
      • “Parens patriae,” where the state steps in and takes the role of the parent (p. 51).
  • What does “voluntary” mean as it relates to decisions taken by disabled teenagers?  The report rightly notes that adolescents are generally dependent on their parents for food, shelter, clothing, transportation and recreation.
    • The report doesn’t 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.
    • Such a high level of dependence will affect the child’s ability to assert their independence in making any kind of decision, let alone if they feel they are a “burden” on their families.
  • What does it mean when we talk about the “best interest of the child”
    • Is this the standard defined by the medical model?  Is it defined by parents who may not have adequate supports?  Is it defined according to a discriminatory view of the quality of life with a disability?
    • 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?
  • 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.  Adolescents and young adults often have problems with:
    • impulse control and risk-taking behaviour;
    • strong emotional reactions;
    • increased reward-seeking and self-stimulating behaviour;
    • complex decision-making processes, planning ahead, weighing risks and benefits;
    • suicidal thoughts and feelings, and self-harming behaviours.
  • So what is maturity?  The report cites court cases that mention different indicators:
    • an understanding that death is permanent, and not just “going to sleep.” (p. 63);
    • experience with making decisions.  Over-protected disabled people may have been deprived of opportunities to practice in real-world situations (p. 41);
    • It’s worth asking; is maturity the same as complying with the family’s or society’s expectations for what a disabled or terminally ill person would want?
  • On page 47, the report refers to the “proposed treatment.” But AS/E are not supposed to be “proposed” by anyone but the person who would die.
  • Section 4.3.2 is entitled “Evaluating the Maturity of Minors Adds a Layer of Scrutiny that Is Not Typically Invoked for Adults.”  It seems to us that this is the level of scrutiny that should be used for everyone, regardless of age.  In fact, even the plaintiffs in the Carter case 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 Carter, paras 873-881).
  • On page 87, the report claims to have shown “that autonomous healthcare decision-making can incorporate the relationships of young patients with their parents/guardians and others who are significant to them.”  This would be great if it were true, but the report:
    • fails to factor in the effects of disability discrimination on the person and their relationships with family and medical staff;
    • does little to acknowledge and guard against negative attitudes about disability and abuse of disabled people; and
    • discounts the emotional and developmental issues that affect the decision-making abilities of young people.
  • 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.  Though the mature minors report did acknowledge this lack (p. 152) and include interviews with three “youth leaders. (pp. 122-123) the lack of disability input affects the content of the report:
    • The report rightly recognizes first nations members’ mistrust of the medical community, while saying little about the very good reasons disabled people are wary of the health care system;
    • 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.
    • 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).
    • 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 “disability should be understood as an interplay between a person’s impairments and the physical and social accommodations available in their environment.” (pp. 126, 148) doesn’t take prejudice and discrimination into account.
  • The report doesn’t 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.  Nor does the report acknowledge the external origin of emotional problems caused by oppression:
    • peer pressure to conform to a non-disabled norm,
    • physical and sexual abuse,
    • devaluation (causing low self-esteem),
    • over-protection,
    • low-expectations,
    • bullying,
    • feelings of powerlessness in the face of painful and invasive medical procedures, and
    • isolation from peers and siblings.
  • 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.  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.  Is it wise to base life-ending policy on a best-case scenario that may, in fact, occur only rarely?  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?  Isn’t 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?