Introduction

Webcast archive: Council of Canadian Academies MAID expansion – advance directives

This week, we continue to look at the Council of Canadian Academies proposal to expand euthanasia requests to include advance directives.

Webcast archive: Council of Canadian Academies MAID expansion – advance directives

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

  • Council of Canadian Academies MAID expansion: advance directives
  • New statistics on Québec’s euthanasia law

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

COUNCIL OF CANADIAN ACADEMIES “MAID” EXPANSION: ADVANCED DIRECTIVES

  • This is the final instalment in our series on Health Canada’s three proposed areas of assisted suicide expansion. Today, we’ll discuss requests for assisted suicide in advanced directives.
  • Advance directives are statements in writing you make expressing your wishes for what should happen to you, if you become incompetent.  An advance directive for assisted suicide would be a document saying that if X, Y, and Z conditions were met, and you were incompetent to make a decision, then you would want someone to administer euthanasia.
  • Sounds pretty simple, right?  But what are those X, Y and Z conditions?  What if you have moderate dementia, but not severe Alzheimer disease?  What if you are mentally alert and aware, couldn’t speak, but could communicate in other ways?  What if you can still eat from a spoon or take liquids through a straw, but can’t hold a spoon in your hand and bring it to your mouth?  What if you can direct people to care for you, but can’t do your own personal care?  What if you need help managing your money, but can manage other parts of your life?
  • The problem with an advance directive is that you can’t predict all the possible things that could happen to you, or how your future self will feel about it.  Treatments may change, your views and values can change over time; you may adapt to a disability where you didn’t believe you could.  So writing a document to cover everything is really impossible.
  • Even documents for refusal or withdrawal of treatment, already pose a significant danger of non-consenting death to ill and disabled people. When admitted to hospital or long-term care, most disabled people are pressured to sign “Do Not Resuscitate” (DNR) orders, Medical Orders for Life Sustaining Treatment (MOLST) or other advance directives. These documents often have a strong bias against life-sustaining treatment.  The pressure to sign them, and the bias against treatment, comes from the idea that life with a disability is a fate worse than death. They portray tube feeding, use of a respirator, and other life-aids as limiting, intrusive, unpleasant, and incompatible with a good quality of life.  Information about such treatments rarely includes the point of view of people who successfully use them in their everyday lives.
  • Studies have shown that medical personnel tend to interpret advanced directives, specifically MOLST, as providing less care than is actually called for. A study in the Journal of Emergency Medicine contained a survey by researchers from the University of Pittsburgh Medical Center. More than 700 physicians in 34 states responded. Over 50% of physicians interpreted a living will as having a (DNR) order when it did not. About the same percentage over-interpreted DNR orders as meaning no treatment except “comfort care” or “end-of-life” care.
  • Advance care planning documents also do not allow for people who cannot orally state their wishes.  Thus, someone who cannot speak may be deemed incompetent, simply because she has no means to communicate.  Whether and how a person is helped to communicate is usually determined in the moment, and their message can be affected by the wishes of the person chosen to interpret for them.  Health care facilities should have Alternative and Augmentative Communication equipment and trained, impartial interpreters on hand so that a non-verbal person can make their current wishes known.
  • Family and medical staff may be unwilling to believe that a person might want to continue living, and thus deem a change of heart as a sign of incompetence. For example, Margaret Bentley  signed a “statement of wishes” saying she would not want to “be kept alive by artificial means or ‘heroic measures’” – including receiving “nourishment or liquids” – if she reached an advanced stage of dementia. When she reached that state, Ms. Bentley continued to accept spoon-feeding from staff at the nursing home where she lived, and demonstrated preferences for sweet food.  She also refused a dental examination.  Though her family claimed she was simply acting by reflex, a court found that she showed her preference and desire to live by continuing to eat, and she could not be denied the “personal care” of spoon feeding.
  • People usually change their minds about wanting to die once they have adjusted to life with a disability, if they have access to emotional support to deal with feelings of loss and grief and services that enable them to remain in their own homes. For example in 2010, 32-year-old Dan Eley was on vacation in Colombia when he broke his neck in a diving accident, and became quadriplegic.  At first, he wanted to end his life in Switzerland, helped by the organization Dignitas. Mr. Eley’s mother agreed, on the condition that he wait five years before making a final judgment about his quality of life. In 2012, he founded a non-profit that helps young people in Columbia and the UK return to school or find work. Mr. Eley continues to run the organization today.

NEW STATISTICS ON QUÉBEC’S EUTHANASIA LAW

  • On September 1, 2017, the Protection of Conscience Project (consciencelaws.org) released a report on Québec’s euthanasia program compiling information from the Province’s health and social services centres (the Centres intégrés de santé et de services sociaux (CISSS) and the Centres intégrés universitaires de santé et de services sociaux [CIUSSS)) in Québec’s 18 administrative regions.
  • Though some data summaries are missing for the first half of 2017, the Protection of Conscience Project report nevertheless shows an increase in the numbers of requests for and provision of Euthanasia in Québec between the program’s inception in December of 2015 and June 10, 2017.  You can view the report, and download Microsoft Excel files (with links to original data tables), at http://consciencelaws.org/background/procedures/assist017.aspx
    • Province-wide, the number of euthanasia requests in the first half of 2017 (501) equals 2/3 of the requests submitted throughout all of 2016 (759). The rate of euthanasia deaths provided is also higher (499 in all of 2016 vs. 310 in the first half of 2017).
    • The number of Continuous Palliative Sedation deaths in 2016 was 618; the number in the first half of 2017 was more than half of that; 376.
    • If euthanasia deaths by population remain consistent throughout 2017, it will have taken Quebec only two years to reach the total Belgium had after roughly nine years – 10 deaths per 100,000 people in the province.
    • The average number of requests for euthanasia made each week in the province increased from about 14 in 2016 to 19 in the first half of 2017. Average euthanasias administered jumped from about nine in 2016 to 11 in 2017.
    • In 2016, 66% of euthanasia requests were granted; in 2017 that figure fell to 62%.  However, the percentage of euthanasia granted continued to vary widely across the province, from a low of 28% or 29%, to a high of 100% in a couple of rural districts.
    • While most “palliative care patients” were living at home (about 46%), there is no indication as to whether these people were receiving hospice or palliative care, home care, or personal assistance services.  Only about 7% were in hospice, while another 40% (2016) and 46% (2017) were in institutions (hospitals and long-term care facilities.)
    • In half of the regions there was an increase in the rate of “continuous palliative sedation” (CPS) per 100,000 palliative patients in the first six months of 2017.
    • In the Laurentian region, the number of continuous palliative sedation cases in the first half of 2017 was more than double the number in all of 2016.
    • Nearly as many Québecers died from euthanasia in 2016 (.7% of the population) as died in auto accidents in 2013 (.8%)