How Margot Bentley is complicating the right-to-die debate

Margot Bentley has no idea what she unleashed.

Dying with Dignity, a 30-year-old organization dedicated to expanding end-of-life options,is reporting"goodbye" letters that say, "I don't want to end up like Margot Bentley."

• Listen to Karin Wells' documentaryon MargotBentley,"In the Presence of a Spoon" on The Sunday Edition

"People are angry with us" says WandaMorris, the organization's CEO."They say we told them advance-care directives about dying are followed these days."

Not for Margot Bentley.

Bentley, 83, a retired nurse who looked after patients with dementia,wrote what she called her "statement of wishes" in 1991.That statement appeared clear to her and her family, but a judge did not see it that way.

Bentley's case demonstrates just how complicated advance-care directives are.

She authorized her husband and daughter to make medical decisions on her behalf "if I reach the point when I cannot recognize my family."

She wrote, "I direct that I be allowed to die," and she specified no heart resuscitation, no surgery, no breathing intervention and "no nourishment or liquids."

Bentley was diagnosed with Alzheimer'sdisease 16 years ago. Now shelanguishes in a semi-vegetative state in a care home run by Fraser Health, the regional health care authorityin Abbotsford, B.C.

She is unresponsive in every way but one:She continues to eat when prodded with a spoon.

Fraser Health refused to follow her directive, when Bentley's family asked it to do so.

Katherine Hammond, her daughter andalso a nurse, askedas an alternative to take her mother home and with the help of palliative care nurses allow her mother to die at home.

The response from FraserHealth was to put a "police order" on Margot Bentley's chart. Abbotsford police were to be called if Hammond or her stepfather attempted to remove Bentley.

The family went to court. Earlier this year the court ruled that by opening her mouth Bentley was consenting to be fed.

The judge saidfeeding with a spoon is not medical care.Itis personal care,and thus not included in Bentley's directive.

"It sure starts to feel like splitting hairs," says Krista James, national director of the Canadian Centrefor Elder Law.

Margot Bentley's family says they want the care home to stop spoon-feeding their mother, who barely moves on her own."The family is very clear that they are doing what their mother wanted. The hospital says they can't denyfood to someone in their care."

The unresolved question is whether a son or a daughter, a legally appointed representative, would be permitted to refuse food or water on a patient's behalf.

"We do not know," says Joanne Taylor, executive director of Nidus, B.C.'s personal planning resource centre. "We have not had a case."

James says, "The worst thing about this case is that it scares people into thinking they have absolutely no power over their livesas an illness progresses."

Compounding the confusion in Bentley's case is the recentSupreme Court of Canada decision in the Cartercase, whichremoved the prohibition against physician-assisted death in Canada.

Hammondhas run out of legal options, but she continues tovisit her mother.

"When caregivers, well-meaning people,say 'But we have to feed your mom.' I say, 'This isn't about whatyou want this is about what my mother wanted.'"

• Listen to KarinWells' Sunday Edition documentary,In the Presence of a Spoon

This week on The Sunday Edition

Starting at 9 a.m. ET on Sunday, June 14on CBC Radio'sThe Sunday Edition:

• Michael Enright: The culture of sexual abuse in the RCMP and Canada's military.
• Pinchas Zukerman and Amanda Forsyth: They are one of the most talented, hard-working and glamorous couples in the nation's capital. He is music director of the National Arts Centre Orchestraand one of the top violinists on the planet. Until recently, she was the orchestra's principal cellist. Hear abouthow they fell in love, what it's like to work in the same place as your spouse, and the music they make together.
• Ronnie Gilbert: Gilbert, the only female member of The Weavers and a key figure in the folk revival of the '50s and '60s, died this week. We'll hear her with singer and activist Holly Near, performing the Weavers' best-known and best-loved song, Goodnight Irene.