Kim Teske went without food or water for 12 days before she died.
The Orangeville, Ont. resident was 52 and living with Huntington’s disease, an incurable neuro-degenerative disease that combines elements of Alzheimer’s, Parkinson’s and schizophrenia.
Though she still lived alone, Teske feared if she did not act soon she would end up institutionalized like her brother Brian, who at 57 could not walk, speak or feed himself.
“She didn’t need to die then,” said Sandra Martin, the award-winning journalist who chronicled Teske’s end of life journey. “She could have enjoyed another few years of life.”
Martin was in St. Albert recently to give a talk on her new book A Good Death: Making the Most of Our Final Choices. Martin said Bill C-14 should have alleviated the cruel choice faced by Teske.
It should have empowered those suffering from irreversible medical conditions like Huntington’s to make important choices around life’s last milestone – death.
Instead, by adding the criteria of a reasonably foreseeable death and not allowing for advance directives, Canada’s medical aid in dying legislation unrightfully denies access to these patients.
“Carter didn’t say anything about dying, it only talked about suffering,” said Martin. “This bill is about being close to death. For some people death isn’t going to happen for a very long time, but that doesn’t mean they’re not suffering or have a terrible disease.”
The bill will be challenged and the process has already started. A 25-year-old B.C. woman living with Spinal Muscular Atrophy, a muscle-wasting disorder, launched a lawsuit against the federal government in June.
But like her predecessors, Julia Lamb’s legal challenge will likely take years to work its way through the court system and affect change.
In the meantime, Martin hopes the country will follow the same cyclical pattern it has in the past.
“What happens in these gaps, it seems to me, is that we the people make a little bit of progress,” said Martin, who has spent the last two years dedicated to researching the subject of physician-assisted death here and abroad.
She gives the example of the palliative care system, which improved greatly after the Supreme Court narrowly voted down Sue Rodriguez’s plea for physician-assisted death in September 1993.
But in order to make progress on where the law stands today, conversations about death and dying need to become more frequent and less taboo.
“I feel that it’s really important for us to take death out of the closet, to stop thinking about it like sex was to the Victorians and to talk about it,” said Martin.
People need to start talking to their families, their doctors and their local politicians about the concept of a good death, she told the crowd of 100 at the St. Albert Public Library on Nov. 22.
This will look different to everyone. Even within the Teske family there was no one-size-fits-all solution.
Faced with the same disease, Deanna Teske, Kim’s younger sister, wanted to live until her dying breath.
“It’s all about individual choice,” said Martin.
Martin was in conversation with Dr. David Amies, a member of Dying with Dignity’s Physician Advisory Council. The talk was hosted by the Edmonton chapter of Dying with Dignity Canada.
Her book A Good Death: Making the Most of Our Final Choices, which chronicles the history of the physician-assisted death movement in Canada and elsewhere in the world, was released in April.
