Webinar Summary: The future of Alzheimer’s and end-of-life care in Canada

One in five Canadians have experience caring for someone living with dementia or Alzheimer’s. Further, the prevalence of dementia more than doubles every five years for Canadians age 65 and older, from less than one per cent for those age 65 to 69 to about 25 per cent for those 85 and older. In recognition of World Alzheimer’s month, DWDC hosted this webinar to learn what is currently being done with respect to advance requests for medical assistance in dying (MAID); hear directly from a MAID provider to better understand eligibility and how it affects those with dementia; and more. 

If you prefer to view this content in video format, you can access the recording here.

Speakers: 

Dr. Ellen Wiebe is a Clinical Professor in the Department of Family Practice at the University of British Columbia. After 30 years of full-service family practice, she now restricts her practice to women’s health and assisted death. She is the Medical Director of Willow Women’s Clinic in Vancouver and provides medical and surgical abortions and contraception. She developed Hemlock Aid to provide consultations for doctors and patients about aid in dying and provides assisted death.  

Jule Briese is a poet living in Qualicum Beach, B.C. Her inspiration is drawn from nature and the guidance and wisdom offered through her Guides. Jule’s most recent book, "The Hot Chocolate and Decadent Cake Society - Alzheimer’s and The Choice for MAID" is a memoir in poetry and prose. Her book advocates for legalization of advance requests for medical assistance in dying for those with dementia who have expressed this choice.  

Puneet Luthra is the Director of Government and Stakeholder Relations at Dying With Dignity Canada. He is a government relations professional with 15 years of experience in the charitable and non-profit sector. He holds a Master’s degree in Public Administration and a Bachelor’s degree in Political Science. Puneet’s experience includes leading the Government Relations department at Inspire where he was responsible for working with the federal and provincial governments to increase access to post-secondary studies by Indigenous students. At Earth Rangers, Puneet served as the Associate Director of Government & Foundation Relations, where he positioned the charity as the leader in children’s environmental programming; and as the Government Relations Manager for Big Brothers Big Sisters, Puneet’s work was focused on incorporating mentoring into provincial ministries that serve children and youth. 

Canadian statistics 

402,000 Canadians live with dementia 

76,000 people are diagnosed each year 

56% of Canadians are concerned about being affected by Alzheimer’s 

1 in 5 Canadians have experienced caring for someone with dementia 

About 2/3rds of Canadians living with dementia are women 

50 million people live with dementia worldwide. This number is expected to rise to 131 million by 2050 

Can a person with a dementia diagnosis access medical assistance in dying? 

Yes, some people with a dementia diagnosis can access MAID. All dementias progress differently and each individual will have their own unique case, however while a person still has capacity, they can discuss being assessed for MAID with their health care provider. 

Advance directives and MAID 

Currently under the law, it is not legal to request MAID in the event of a dementia diagnosis in your advance directive (Advance Care Plan).  

Advance requests for MAID are currently under review in the Parliamentary Review of MAID. 

What is the Parliamentary Review of MAID? 

A review of medical assistance in dying in Canada was mandated in Bill C-7 when it passed in March 2021. A committee of both Houses of Parliament was struck in June 2021 to review advance requests, MAID for mature minors and those whose primary condition is a mental illness, the state of palliative care and the protection of people with disabilities. 

In regards to advance requests for MAID we can expect a block of time held by the committee to study advance requests, this could include a call out to hear from experts and those with lived experience. We know that 80% of Canadians support advance requests for MAID. 

What is the difference between the waiver of final consent and an advance request? 

The waiver of final consent allows someone who has already been assessed and approved for MAID to receive it on their chosen date even if they don't have the capacity to consent at the time of the MAID procedure. This would be based on a signed and dated agreement with their MAID provider and the patient must be in Track 1 whereby their natural death is reasonably foreseeable. The waiver can only be used by the MAID provider who signed it and it refers to the date selected for the MAID provision, not a state of health. 

An example would be when a person loses capacity before their scheduled MAID date because they had a stroke and could no longer communicate. 

Advance requests for MAID are different than the waiver of final consent, and are currently not permitted under Canada’s assisted dying law.  

An example of what advance requests could potentially look like would be when a person expresses in their advance health directive that in the future, with a given health condition or state such as Alzheimer’s, a MAID provider would carry out an assisted death for this person. 

How do we balance clinician willingness and patient interest in advance requests? 

Dr. Weibe was involved in a study asking providers in which situations they would be willing to provide MAID with an advance request. There were many MAID providers who were uncomfortable with the idea of providing MAID to a patient they did not know with an advance request. There is much to learn about how we would handle advance requests should they become law. 

How do the election results impact MAID legislation? 

The make-up of our new government is very similar to what it was before the election, a Liberal minority. At DWDC we are urging the new government to reconstitute the Parliamentary Review of MAID as soon as possible. 

Jule Briese – author and advocate for advance requests for MAID 

Great Life Giving Spirit – Native American Tradition 

(Jule read the first verse, you can see the whole piece here.) 

Great Spirit of love, come to me with the power of the North. 
Make me courageous when the cold winds of life fall upon me. 
 
Give me strength and endurance for everything 
that is harsh, everything that hurts, 
everything that makes me squint. 
Make me move through life 
ready to take what comes from the North. 

Jule’s book “The Hot Chocolate and Decadent Cake Society – Alzheimer's and the choice for MAID – a memoir in poetry and prose” offers snapshots of the first year after Jule’s husband Wayne’s Alzheimer’s diagnosis. It strongly advocates for his right to choose MAID when quality of life, as he defines it, becomes painfully compromised. 

Jule also coordinates a Compassionate Support Program. It includes sharing, personal reflection and relevant activities that nurture compassionate support. It includes four components, each one is a 2-hour session for 8 participants. 

Resources 

You can contact Jule about the Compassionate Support Program or order her book at: [email protected]

Bridge 4 U & Bridge C14 

Dr. Wiebe’s study: Advance requests for MAiD in dementia: Policy recommendations emerging from a mixed-methods study of the views of the Canadian public and MAiD practitioners 


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