Canadians want equal rights to access assisted death when mental incapacity becomes unbearable.
My father is 93 and living a life he never wanted. He spends all day and many nights sitting up in a wheelchair because he gets so agitated that he long-term-care attendants can’t put him to bed. He spends most of his time in confusion or torment, not understanding where he is or why, nor much else about his world. He doesn’t understand TV shows or books he once loved. He can barely make sense of a birthday card.
It’s heartbreaking to witness. More importantly, his quality of life is so diminished that he is living beyond his desire to do so.
Dad was diagnosed with early dementia years ago. Then he had a bad fall and suffered two brain bleeds. Despite months in hospital and all best efforts, his mental capacity has never returned. The dementia got worse.
Before all this my dad was an intelligent, strong, spirited character. He swore, literally and figuratively, he never wanted to be in his condition or the kind of place he lives in today because my mom, the love of his life for 72 years, hasn’t the strength or ability to keep him at home. She visits him every day. She’s exhausted.
When dad was still of sound mind, had he been able to make an advance directive for assisted death when he reached this state of mental incapacity, he would have done so in a heartbeat. I’m not speaking for him. I say it with confidence because he often said it himself and made every advance legal directive possible at the time, including a do-not-resuscitate order, to take responsibility for his life and death.
But there were no legal avenues for him, or any Canadian, to stipulate an assisted death in advance of being mentally incapacitated. There still aren’t.
In 2016 the government brought in legislation to allow for assisted death in certain circumstances — a step in the right direction. Bill C-14 responded to the Supreme Court of Canada ruling in the Carter case, but it doesn’t go far enough. It denies people with dementia their Charter rights to a dignified death.
Not everyone will want to make an advance directive for assisted death in the event they reach a state like my dad. But for those of us who do, the current legislation tramples on our rights. We all have the right to determine our lives. The Canadian Charter of Rights and Freedoms says so, as did the Supreme Court in the Carter case.
So what can we do to change things? People across Canada are doing what I am here — getting people to think and talk about it, not an easy task since people are notorious for avoiding discussing death.
We’re also taking action. In Sooke, Dana Livingstone started a House of Commons petition to change Bill C-14 after her mom suffered severe dementia at life’s end. It’s garnered thousands of signatures. In London, Ont., Ron Posno is working hard advocating for people with dementia and changes to Bill C-14 while he suffers with the disease himself. In Halifax, Audrey Parker, who had to choose assisted death earlier than she wanted, was a brilliant assisted-dying activist working for change.
Thousands of Canadians are waking up to the issue. On May 30, the University of B.C. is hosting the 3rd Annual Conference on Medical Assistance in Dying. You can bet this topic will be discussed.
In the meantime, talk to your friends and loved ones. Write your MP. Blog and tweet. Write letters to newspaper editors and the Alzheimer Society of Canada. Canadians want equal rights to access assisted death when mental incapacity becomes unbearable.
Glenda Bartosh is a Vancouver journalist.
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