The right to die?

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Just before noon on a Monday, Gillian Bennett dragged a mattress from inside her British Columbia home to her favourite spot outside, on her property. She drank some whiskey and Nembutal with water, and then held her husband’s hand as she took her last breath.

Shortly after her death, Gillian’s last words were made public on deadatnoon.com – a website she created. Her dying wish was to get people talking about death; she believed every human has the right to determine how and when they die.

The decision to take her own life was not one Gillian made lightly. After she was diagnosed with dementia several years ago, however, she knew there would come a time when her mind would no longer be present in her body. With this notion lingering at the back of her mind, Gillian refused to live out her last days suffering the indignities that inevitably come with dementia.

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Dementia is a ruthless and vicious disease. It arrives like a thief at your doorstep and robs you of your most prized possessions – independence, memories and thoughts. It shows no mercy – giving you glimpses of the things it has stolen in rare moments of salience, which become fewer and farther between as the disease progresses.

Anyone who has witnessed its effects on a loved one can attest to just how ruthless it is.

Gillian’s open letter reads, “Every day I lose bits of myself, and it’s obvious that I am heading towards the state that all dementia patients eventually get to: not knowing who I am and requiring full-time care. I know as I write these words that within six months or nine months or twelve months, I, Gillian, will no longer be here. What is to be done with my carcass? It will be physically alive but there will be no one inside. I can live or vegetate for perhaps ten years in hospital at Canada’s expense, costing anywhere from $50,000 to $75,000 per year. That is only the beginning of the damage. Nurses, who thought they were embarked on a career that had great meaning, find themselves perpetually changing my diapers and reporting on the physical changes of an empty husk. It is ludicrous, wasteful and unfair.”

Gillian did her research. She weighed her options and the effects they would have on her family and society. After careful thought, she made a decision to end her own life, before she no longer had the ability to do so. With no legal option of doctor-, and with it being illegal in Canada to aid a loved one in ending their suffering, what choice did she have? And, isn’t it hers to make?

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Having witnessed firsthand the indignity dementia brings, I don’t blame Gillian. I would not want to live that way, so I respect her decision. On some levels, I even applaud it. Her thought process leading up to Monday is what she wants to share. “There are many ethical issues here: life extension radically alters people’s ideas of what it is to be human – and not for the better. As we, the elderly, undergo manifold operations and become gaga while taking up a hospital bed, our grandchildren’s schooling, their educational, athletic, and cultural opportunities, will be squeezed dry,” she wrote.

Her reasoning was pragmatic – why should she burden the system to provide care for her, when she doesn’t know who she is and doesn’t want to live in that state? It makes sense. Unfortunately, death is not pragmatic. It is emotional, painful and messy, and there isn’t always room for reason. But, maybe there should be.

In media interviews following her death, Gillian’s family urged Canadians to rethink assisted suicide, arguing that if Gillian had that option she may have lived another six months, even a year. Her family believes that if Gillian knew her doctor or a loved one could step in once she had fully surrendered to the dementia, she wouldn’t have had to take her own life when she did.

Assisted suicide is a divisive issue – made even more complex when interwoven with emotions and religious beliefs. As human beings, however, is it not our right to decide what kind of life we want to live, and what kind of death?

With the passing of Dr. Donald Low last year, and his emotional plea to rethink the law prohibiting assisted suicide – the conversation got started. End-of-life care is gaining awareness, and health professionals and policymakers are finally starting to listen.

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Gillian’s legacy was to continue the conversation. While she recognized she didn’t have all the answers, she raised valid questions. It was her hope “that the medical profession will mandate, through sensitive and appropriate protocols, the administration of a lethal dose to end the suffering of a terminally ill patient, in accordance with her Living Will.”

By going public with her story, Gillian has gotten us to think about death in a different way. She has also empowered us to choose our own destiny, and reminded us that we need to fight for transformative change in healthcare. I definitely applaud her for that.

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