Accessing MAiD with Dementia, from Canada's Top MAiD Advisor
An incredible night of education - thank you, Dr. Stefanie Green
Medical Assistance in Dying (MAiD) is a complex, sensitive and often misunderstood topic, especially for those of us facing a dementia diagnosis. On November 21, 2024, our webinar featuring Dr. Stefanie Green, one of Canada's leading MAiD advisors, shed light on this important issue.
The webinar, hosted by Christa Ovenell, a funeral director and end-of-life doula, alongside myself, Connie Jorsvik of Patient Pathways.ca Advocacy, Education + Planning, brought together over 300 participants from across Canada and internationally, as far away as Australia, to discuss the increasing interest and misconceptions surrounding accessing MAiD with dementia.
The following is an overview of what we learned.
Understanding MAiD Legislation in Canada
MAiD is governed federally in Canada, but its interpretation and enactment vary by province. This highlights the importance of understanding local regulations when considering MAiD, as each province may have slightly different procedures and requirements.
British Columbia has developed a strong MAiD framework and patient support system. However, we face ongoing challenges due to increasing demand and insufficient assessors and providers, particularly in more remote areas of the province.
Does my Primary Care Practitioner need to be involved in my assessment or request?
Contrary to common belief, your primary care physician does not need to be involved in your request for MAiD in British Columbia. Primary care practitioners (PCPs) - general practitioners and nurse practitioners – may be asked to do the first assessment. They are not required to agree with your decision or perform an assessment if they are conscientious objectors. They are, however, required under College of Physicians and Surgeons of BC regulations to refer you to a PCP who will assess you for MAiD.
Patients can bypass their primary care practitioner and go directly to MAiD coordinators for their health authority if they wish. The blog post Understanding Medical Assistance in Dying provides recommended procedures, listings, and links for BC.
MAiD Qualifications
In Canada, adults over 18 who can make health decisions and are in a "grievous and irremediable medical condition" are eligible for MAiD. These conditions include having a serious, irreversible illness, health decline, or unbearable suffering that cannot be alleviated in a way the individual finds acceptable.
The patient must voluntarily request MAiD without external pressure, and their informed consent and counselling must be obtained. The individual must also be informed of alternative means to relieve suffering, including palliative care.
Unique Challenges in Accessing MAiD with Dementia
Dementia is an organic disease of the brain that will eventually cause death and, therefore, it is a qualifying condition for MAiD. However, some challenges for dementia patients may include:
Being fully capable of understanding that they have a serious illness and that they are asking for assistance in ending their life. Early in cognitive decline, people often have insight into their memory issues and may seek help. As dementia progresses, executive function is lost, making once-easy tasks difficult, such as balancing a chequebook or remembering passwords. At this stage, their ability to request MAiD might also be compromised. Additionally, a hallmark of advanced dementia is Anosognosia, which is the inability to recognize one's condition. Therefore, the ability to make an informed request has been lost.
Their suffering is “grievous” or severe. Few adults with dementia state that they are suffering.
An adult must be able to express:
their choice for MAiD
an understanding of their health
an appreciation of their underlying illness
an understanding of the process of MAiD
the risks versus benefits of treatment
an understanding of the impact of assisted death on loved ones
that their death is now reasonably foreseeable, often referred to as "10 minutes to midnight."
Read the detailed and important CAMAP document, Assessing MAiD in Dementia.
The Importance of Requesting MAiD as Early as Possible
It can take years to identify the signs of dementia and get a diagnosis. Acknowledging increasing cognitive decline, and receiving early and ongoing testing, is vital. Learn more, and how to recognize early signs, in Terms Used in Cognitive Decline and Dementia.
It is important to get the request for MAiD started as early as possible. The patient might not initially qualify, but should receive ongoing, regular monitoring assessments.
The Importance of a Waiver of Final Consent
When there is a probability of loss of capability, the adult and their Provider can sign a Waiver of Final Consent, stating a date at which the adult will receive MAiD, even if the adult is no longer capable of making that decision, as long as the adult shows no sign of refusing through verbal or physical actions (withdrawing, moaning, pushing or hitting).
If the adult is approaching the date stated in the Waiver of Final Request and is still capable of stating that they want the date of their assisted date delayed, the adult and their Provider may sign a new Waiver and a date in the future (generally for no longer than 90 days).
It is crucial to understand that a patient is able to withdraw their request for MAiD at any time, and it is the last question to be asked. Patients retain the right to refuse MAID at any time, even after signing a waiver; if they express resistance, the procedure is immediately halted.
The Role of the Care Partner
As a loved one or substitute decision-maker—even if you have a legal role as the Representative—you have no legal role to play when it comes to Medical Assistance in Dying. The decision-making and the process must be the adult's at every step. However, you can help them get the process started, and act as a vital support, administrator and advocate for the person you love.
The Role of End-of-Life Specialists
It is important to consider bringing experienced end-of-life specialists such as death doulas, patient advocates, event coordinators, and funeral directors who are experienced in MAiD deaths to assist patients and families in their journey. These experts can manage details, allowing families to be fully present during difficult times.
Resources like Connie Jorsvik's popular step-by-step guidebook, "Navigating the BC Healthcare System," can be invaluable for patients and families. PatientPathways.ca also offers advocacy and navigation services, while Christa at Death's Apprentice Education & Planning offers wrap-around planning services, executor support, and grief companioning.
Conclusion + Next Steps
Our webinar with Dr. Stefanie Green provided crucial information on MAiD and dementia, and underscored the importance of understanding one's rights and options when considering MAiD, especially for those affected by dementia.
To be notified of similar upcoming workshops and webinars, subscribe here.
If you or a loved one are considering MAiD or would like to discuss receiving assistance as a patient, contact Connie or Christa to request a free consultation about your needs. Our expert team of Patient Advocates, Healthcare Navigators and Advance Care Planners is booking for 2025.
Additionally, there is much that can be learned by exploring the resources provided below, and through your local health authority in order to stay informed on the latest developments in MAiD legislation and practices in your area.
Resources + Links
Dr. Green's Resources
This is Assisted Dying: A Doctor's Story of Empowering Patients at the End of Life, by Dr. Stefanie Green. There's also a link at the bottom of the webpage for the audiobook read by Dr. Greene.
Dr. Green’s Practice: Learn about MAiD from the perspective of the patient.
Watch: Why Dr. Green does this work
Additional Resources
Patient Pathways blog articles:
The Story of Gayle Garlock: When Canada's medical assistance in dying law was passed in 2016, the widespread assumption — among doctors, lawyers, patients and even MAID providers — was that it excluded those with a dementia diagnosis. Gayle Garlock decided to challenge that assumption. On Aug. 26, the Victoria man became one of the first Canadians with a dementia diagnosis publicly reported to have received MAID. His case is a sign of a growing consensus that a dementia diagnosis does not necessarily preclude eligibility.
The Story of Gayle Garlock, Part One - Voices for the Completed Life
The Story of Gayle Garlock, Part Two - Voices for the Completed Life
Alzheimer’s Society Information:
Position Statement: Advance Requests for MAiD: The Alzheimer Society of Canada supports the right of people living with dementia to make an advance request for a medically assisted death.
Canadian Association of MAiD Assessors and Providers (CAMAP)
CAMAP guidance papers - Capacity, MAiD and Dementia, RFND
MAiD Family Support Society: Striving to provide compassionate, lived-experience support and connection to people helping a loved one who is considering or planning for Medical Assistance in Dying (MAID), or those who are grieving a loss due to MAID.
Bridge C14: A Network of Peer-to-Peer Connections and Community Supports Through All Stages of Medical Assistance in Dying (MAiD)
Advocacy
Dying With Dignity Canada (DWDC) is the national human-rights charity committed to improving the quality of dying, protecting end-of-life rights, and helping people across Canada avoid unwanted suffering.
Death’s Apprentice Education & Planning: Follow Christa on IG for your “daily dose of death education”
