Canada's new medical assistance in dying law covers the majority of patients who would seek a medically assisted death, but it still bars access for large groups of people including; the mentally ill, mature minors and people suffering from degenerative illnesses. 

A recent poll conducted by Dying With Dignity shows that 8 in 10 Canadians support the right to advance directives for assisted dying.  Specifically, advance directives that would allow a still-competent patient with a serious degenerative illness to make an advance request for assisted death that could be carried out when he or she is no longer competent.

Meet 64-year old Jack Brown. Jack has been diagnosed with early onset Alzheimer’s. Doctors suspect he carries the same gene that caused his mother’s slow demise.

Dementia is a neurological disease that leads to the breakdown of mental functions. Symptoms of dementia include: memory loss, behaviour changes, judgment and reasoning problems, and changes in mood and communication abilities. (HealthyCanadians.gc.ca

A Public Health Agency of Canada and Statistics Canada report projects that deaths linked to Alzheimer’s disease and other dementias will near 60,000 in 2016 and increase to as high as 90,000 in 2031.

In Road to Mercy Jack and his wife Riemke learn that his situation is the one that confounds even the most ardent supporters of physician-assisted death. They are searching for a way out, one that will allow Jack to avoid the indignities of his disease, but even Canada’s broad Supreme Court ruling did not specifically name advance directives as a Charter right. The Canadian government is currently conducting research on the ethical, moral, and legal consequences of permitting requests for medical assistance in dying in advance care plans. 

The largest support association for people suffering from Alzheimer's believes advance directives should not be an option for people diagnosed with dementia.  In their opening statement to the federal committee on physician-assisted dying it stated:

“The Alzheimer Society of Canada believes that because we cannot predict future suffering, providing advance consent for MAID should not be possible for people with dementia.”
- Alzheimer Society of Canada, Medical Assistance in Dying Position Paper                                                              
The Alzheimer Society of Canada outlined three critical points underpinning their view:
  • people are not able to predict the exact nature of the progression of their own disease

  • people’s wishes may change significantly over the course of a disease that can last up to 10 years and more

  • people with dementia would not be considered competent under the law to make a decision to end their life

Advance directives for medical assistance in dying are permitted in Belgium, Luxembourg, and the Netherlands. However, only the Netherlands, allows advance directives in the case of dementia, under the following conditions: “A physician can perform euthanasia on a patient with dementia only if such an [advance] directive exists, if statutory care is taken and if, in his opinion, the patient is experiencing unbearable suffering with no prospect of improvement.”

 A representative from the Netherlands’ euthanasia review committee shared that “the vast majority of patients with dementia were those in the early stages who were competent to consent, and there have been only “a few” cases of euthanasia in people with advanced dementia.” 109 people with dementia requested an assisted death in the Netherlands in 2015.

IMPACT ON CAREGIVER

He worries about me more than he worries about himself. He always worries about, what am I going to do if something happens to him? But he doesn’t like to think about the future for himself.
— Riemke, Jack's wife

In Oregon, 48.1% of patients who chose assisted death said burden on family, friends and caregivers was a major end-of-life concern. In Washington, where assisted dying is also legal, this reason was cited by 52% of assisted death participants.

In Mapping Connections: An understanding of neurological conditions in Canada, the Public Health Agency of Canada reports that due to an aging population “both the number of individuals facing the challenges associated with neurological conditions and the cost of caring for these individuals are expected to rise. This burden on health and disability, as well as the need for informal caregiving by families and friends, will result in economic consequences to individuals, caregivers, and the health care system.”

Riemke and Jack have discussed admitting him into a long term care residence, but the couple has lived together for 37 years, and neither one can bare the thought of it.  As Jack's mind deteriorates, he's haunted by the memory of his mother's slow death with dementia. Under the current law, it's a future he has no way of avoiding.

RESOURCES On Alzheimer's, Dementia & Advance Care Planning

Factsheet on Alzheimer’s disease and other dementias (Alzheimer Society of Ontario)
For more information on Advance Care Planning visit, Advancecareplanning.ca 
For programs and services on dementia in your province, visit HealthyCanadians.gc.ca 
Download a free Advance Care Planning Kit from Dying With Dignity Canada