Wisdom//

A Dignified Ending: How Gillian Bennett Decided to Take Control Over Her Fate

"I would rather die than continue living with dementia."

Katarzyna Hurova/ Shutterstock
Katarzyna Hurova/ Shutterstock

After taking a last look at her favorite vista on Bowen Island, Vancouver, Gillian Bennett died on August 18, 2014.

In a four-page letter posted by her family on a website entitled, deadatnoon.com, Gillian, an eighty-five-year-old retired therapist, offered an impassioned argument as to why aid in dying should be available for those who, who like herself, reject the indignities of dementia.

Gillian was still in the early stages of Alzheimer’s disease when she drank some good whiskey followed by a hefty dose of the barbiturate, Nembutal.  Her husband, Jonathan, witnessed the death, and he carefully explained the circumstances to their physician, the coroner, and law enforcement authorities. There were no subsequent legal complications.

The couple had been married for sixty years, and he was a retired philosophy professor. Jonathan said, “I held her hand. I agreed with her choice… She wouldn’t let me help her, and I didn’t wish to. I don’t know where she got the Nembutal or the instructions; she didn’t tell me… She was absolutely not frightened. Not even slightly. She was as calm and peaceful as you could imagine.”

Their daughter, Sara, fifty-six, and son Guy, fifty-five, were invited to visit earlier in the weekend to say goodbyes. Both understood and also supported her wishes. In Gillian’s farewell online missive, she wrote:

“I will take my life today around noon. It is time. Dementia is taking its toll and I have nearly lost myself. I have nearly lost me.

There comes a time . . . when one is no longer competent to guide one’s own affairs. I want out before the day when I can no longer assess my situation, or take action to bring my life to an end.

I have known that I have dementia, a progressive loss of memory and judgment, for three years. It is a stealthy, stubborn and oh-so reliable disease. I might have preferred an exotic ailment whose name came trippingly off the tongue, but no, what I have is entirely typical. I find it a boring disease, and despite the sweetness and politeness of my family I am bright enough to be aware of how boring they find it, too… I don’t think my lovely cat has noticed, but I’m not sure…

Ever so gradually at first, much faster now, I am turning into a vegetable…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…

Three outsize institutions: the medical profession, the Law, and the Church will challenge and fight any transformative change. Yet we all hear of changes in each of these professions that suggest a broader approach, guided and informed by empathy. My hope is that all of these institutions will continue to transform themselves, and 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…

Just in case anyone is tempted to think I must be brave to off myself, you should know that I am a big sookie. I am sorely fearful of being alone in the dark. I am scared something will get me. I do not want to die alone. If my cat were failing in the way that I am, I would mix some sleeping medication in with top-quality ground beef, and when she fell asleep, carry her lovingly to the garden and do the rest. Who wants to die surrounded by strangers, no matter how excellent their care and competence?”

Gillian’s family were aware that during the final six months her memory impairment had worsened and she had become unable to play her beloved game of Scrabble. The family understood that “the window was closing.” If she could talk about euthanasia, the window remained open and her family was ready to support her wishes—while carefully observing the elements of criminal law. When Gillian ceased discussing euthanasia then that option would be over.

Five years have transpired since her death, and Sara has had ample opportunity to reflect on the experience. She has dissected her mother’s reasoning and cites several factors that contributed to the decision, beginning with the observation that Gillian was neither a whiner nor a complainer and abhorred physical suffering. Gillian understood that most discomfort comes in the last part of life, “So that you need to control your death if you want to avoid it.” Gillian made it clear that she was also determined to not inflict upon her family the indignities that inevitably lay ahead. She had firm political and ethical views, and she believed it was morally repugnant for elderly people to consume large portions of the public funds. She weighed this against educating every single child in the country and never wavered in her resolve that protracted dying was wrong.

Sara told me: “My sons were in eleventh and twelfth grades in 2014. They knew the plan, but they didn’t know the timing… When she was closing in on her day… we had a talk about it. I said “You know how Gram has always said that she would make her own decision about when she died, and now she is getting close to possibly losing the capacity to make that decision. She will take her life sooner rather than later.”

Sara continued: “My youngest son began to cry and his brother said, ‘I get it, Mom. We have to help her. We have to help so that she sticks her landing.’ He completely understood it is not that we want Gram to be dead. It is that we want her to have the victory of sticking her landing.”

In 2016 following a landmark ruling by Canada’s Supreme Court, the Canadian Medical Assistance in Dying (MAID) statute was enacted throughout the entire country. Gillian would have likely qualified, because the law only requires that “death must be reasonably foreseeable.” This contrasts with “death with dignity” protocols in nine American states and the District of Columbia, which all require people to have a prognosis of six months or less, thereby excluding most of the dementias and other neurodegenerative disorders.  

Ruth von Fuchs, President of the Right to Die Society of Canada, sees a lesson in Gillian’s story: “In the 20th century, people in developed countries came to feel that the sensible and responsible thing to do was to control their family size. In the 21st century, people in developed countries are coming to feel that the sensible and responsible thing to do is to control their lifespan – trimming off the part they don’t want, the way they would trim the fat and gristle off a steak.”

I am not alone in believing that dementia is a fate worse than death. A cure would be ideal, but I would feel reassured if people had more control in shaping the manner and timing of their end when deteriorating with this disorder.

A Dignified Ending: Taking Control Over How We Die, Rowman & Littlefield, August 2019 • 978-1-5381-1574-9

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