Perry MacDonald is advocating for changes to Canada's Medical Assistance in Dying (MAID) laws following the death of his brother from dementia. His brother, who was diagnosed at 45, passed away at 63 after nearly two decades of living with the disease. MacDonald’s experience has led him to question the current regulations surrounding MAID, particularly in light of recent comments from Canadian author Robert Munsch, who has requested MAID due to his own diagnoses of dementia and Parkinson’s disease.

Munsch highlighted a critical aspect of the law: individuals must be able to actively consent on the day they receive MAID. He expressed concern about the timing of his request, stating, "I have to pick the moment when I can still ask for it. If I waited too long, you’re stuck with me being a lump." Current regulations require that individuals confirm their consent immediately before the procedure, which can be problematic for those with degenerative conditions.

MacDonald’s brother did not apply for MAID, but MacDonald believes that even if he had, it would not have mattered under existing laws. At the end of his life, his brother was not mentally capable of providing consent. Instead, he was placed in palliative care and deprived of food and water, leading to an eight-day death process. MacDonald recalls, "Eight days him thrashing around on a bed, drying before he dehydrated to death. With my mother, his kids and his wife there, for eight days." He criticized the medical team's refusal to increase his brother's morphine dosage, stating, "It’s moronic."

Reflecting on his brother's suffering, MacDonald said, "There’s got to be a better way." He believes that individuals with conditions like Alzheimer’s should have the option to request MAID in advance, allowing them to plan for a dignified death before losing the ability to consent. To promote this change, he has launched a website called Update MAID Laws, Canada, which advocates for advanced consent options.

The website argues that Canadians should be able to sign up for MAID before being diagnosed with dementia, as many individuals are unable to consent by the time they are diagnosed. In Quebec, a law was passed last autumn allowing individuals with serious and incurable illnesses to make early requests for MAID. MacDonald views this as a positive step, stating, "Quebec doesn’t have it quite right yet, but they’re a step ahead with the advanced request."

However, Trudo Lemmens, a law professor and bioethicist at the University of Toronto, raises concerns about the implications of such changes. He warns that the discourse surrounding MAID may send a troubling message to individuals with cognitive disabilities, suggesting that their lives are not worth living. He cites a case from the Netherlands, where euthanasia has been legal since 2002, to illustrate the ethical complexities involved in these decisions.

Lemmens emphasizes the need for careful consideration of the ethical dilemmas surrounding MAID, stating, "It’s an ethical minefield, psychologically difficult, difficult for physicians and family members." He expresses concern that the current practices may not adequately protect vulnerable individuals who may not fully understand their situation.

Despite the challenges, MacDonald remains determined to advocate for change. He insists that he is not seeking to expand or loosen MAID laws but rather to ensure that individuals have access to the options they need. "We’re not trying to change MAID laws. We’re not trying to expand them. We’re not trying to make them more lenient or anything. The only thing we’re trying to do is help people get access to the laws, or the ones that have access to keep access," he said.

As discussions about MAID continue, both MacDonald and Lemmens reflect on their personal experiences with dementia. MacDonald hopes to prevent others from enduring the same suffering his brother faced, while Lemmens calls for a more nuanced conversation about the implications of MAID for individuals with cognitive disabilities.