Some days Tanya Secord and her sisters feel like bad people.
Their dad is three years into a Lewy Body Dementia diagnosis; he depends on a wheelchair because he is too unsteady to walk on his own and Secord said on good days he can hold a conversation that makes no sense, but on bad days, he is vegetative.
“We are hoping the next fall takes him out,” she said. “So he doesn’t have to suffer anymore.”
Secord believes that if her father knew how he was living, he would be mortified. He was a man that needed to control every aspect of his life, but his diagnosis took that and he couldn’t understand why.
“He doesn’t get a choice and he will never get a choice, but generations moving forward should be able to have a choice,” she said.
Though medical assistance in dying (MAID) is now legal in Canada, the patient is required to give informed consent at the time of the request as well as immediately before death, unless special circumstances apply.
An Alzheimer’s or dementia patient, for instance, may be unable to legally give informed consent and, currently, advance requests are still illegal in Canada.
Secord and her sisters would like to see that changed.
“For us, it is pretty cut and dry,” she said. “If our families can’t look after us anymore and we have to go into long-term care, that’s it. We don’t want to live in long-term care.”
An advance request is made when a person can still consent and is honoured later after they lose the capacity to make decisions for themselves.
The person would still have to meet the legal eligibility requirements and be approved for MAID by a doctor. There is also potential for a person to incorporate personal preferences such as “when I no longer recognize my loved ones.”
MAID was first legalized in Canada in 2016 after a Supreme Court of Canada ruling said people with irremediable medical conditions should have the right to ask a doctor to help them die.
However, barriers to access were still a problem, said Susan Desjardins, board vice-chair for Dying with Dignity Canada.Two witnesses were required, people with mental health illnesses were not eligible and advance requests aren’t permitted, among other things.
The legislation was revised in March 2021, granting access to MAID for those who are intolerably suffering but not near death; decreasing the required number of witnesses to one; allowing approved procedures to be carried out even if the person can not consent immediately before death.
The federal government was given two years to review the issues that weren’t addressed, including advance requests and access for people with mental illness.
A committee was formed but disbanded for the election.
The Secord, her sisters and Dying with Dignity, an organization working to help people in Canada die more comfortably, are calling for the parliamentary review to continue. They are writing letters and calling on others to do the same.
“If it’s not something you agree with and want to do yourself, then that’s fine, but don’t stop the people that want to do that,” Secord said.
According to Health Canada, there were 7,595 MAID deaths in Canada in 2020.