Two painful videos tell the story of a former nurse’s fight to die
VANCOUVER — Two brief, painfulto-watch videos say — and show — it all: Margaret (Margot) Bentley in what’s commonly called a vegetative state, uncommunicative and unresponsive to her husband’s tender touch, to her daughter’s warm voice, and to her surroundings.
In Say Hello, a 17-second video, Bentley is slumped in a chair, eyes closed. Her husband gives her an affectionate rub on the shoulder, then pats and embraces her hand.
In the 36-second video called Empty Spoon, Bentley’s daughter, Katherine Hammond, puts a spoon without food to her mother’s mouth and she opens her mouth. This happens a few times. The behaviour is called the snout reflex, and it’s a test sometimes used by neurologists testing for brain damage.
Mouth-opening helps confirms damage. It is not, the family contends, a sign that Bentley wants to be fed so she can keep living.
Indeed, it’s the last thing she would have wanted, according to the former nurse’s 1991 living will, which categorically states she does not want “liquids or nourishment” if she were to be diagnosed with an incurable disease like the one she’s had for a dozen years — Alzheimer’s.
The pair of videos make up part of the evidence her family’s lawyer has submitted to the B.C. Supreme Court in a dying with dignity case drawing attention across the country.
“I made the videos with my phone,” Hammond said Wednesday, adding the idea came from her mother’s doctor, Andrew Edelson. “[He] suggested we do this during a conversation around my mom responding to stimulation of her mouth. Her husband, John, was present and involved, as well as her previous caregiver ... who is now assisting John.”
At the Abbotsford nursing home where Bentley has lived for the past four years (she was in another facility for nearly five years before that), care aides tap her bottom lip to get her to open her mouth. Sometimes Bentley opens her mouth, sometimes she doesn’t. Infants have the same “rooting” reflex.
Kieran Bridge, the lawyer who served Fraser Health, the provincial government and the publicly funded Maplewood Seniors Care Society this week with a lawsuit for not abiding by the terms of Bentley’s living will, says the videos are meant to show Bentley in the condition she’s been in for at least three years: “In particular, they demonstrate her lack of response to attempts to communicate and her reflexive response to having even an empty spoon put in her mouth,” he said.
Bridge, who has taken the case pro bono, says in the lawsuit that spoon-feeding constitutes a battery since it goes against Bentley’s wishes.
Fraser Health sees it another way: Bentley is opening her mouth to be fed, to stay alive, and if no one fed her, caregivers would be abdicating their responsibilities to provide her with basic essentials. Ignoring such obligations might result in a lawsuit or even a violation of the Criminal Code, Fraser Health contends. It says those obligations trump Bentley’s living will.
Dr. Derryck Smith, a Vancouver psychiatrist and board member of the organization Dying With Dignity said Bentley is clearly in a vegetative state.
“She’s barely alive and basically, she’s being kept alive in this miserable state by the food. She could linger like this for many years as long as she’s getting food and water. She’s in the end stages of dementia. Her brain is destroyed but other parts of her body — like her beating heart and breathing lungs — keep percolating along.
“It’s inhumane and just plain silly to let people linger like that. We would never let a pet suffer like this,” he said.
Health Minister Terry Lake said Wednesday that the court case will be “helpful” since it should “provide some guidance and clarity.”
The government and other defendants to the action have 21 days to respond to the lawsuit. Representatives of Fraser Health won’t comment on the issues while the case is before the courts.