Sunday June 14, 2015

Margot Bentley's wish to die: not granted - a Karin Wells documentary

Left: Margot Bentley as a young nurse. Right: Margot Bentley today.

Left: Margot Bentley as a young nurse. Right: Margot Bentley today. (Credit: Katherine Hammond)

Listen 27:46

Margot Bentley has no idea what she unleashed. Dying with Dignity, a thirty 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." 

"People are angry with us," says Wanda Morris, the organization's BC-based president.  "They say we told them advance care directives about dying are followed these days."

Not for Margot Bentley.

Bentley, now 83, was a nurse who looked after patients with dementia. She wrote what she called her "statement of wishes" in 1991. She authorized her husband and her daughter to make medical decisions on her behalf.

Margot Bentley

Margot Bentley, who has advanced Alzheimer's disease, is spoon-fed each day at a B.C. residential care home. (CBC)

"If I reach the point when I cannot recognize my family," she wrote, "I direct that I be allowed to die." She went on to specify no heart resuscitation, no surgery, no breathing intervention, "no nourishment or liquids" .

Margot Bentley was diagnosed with Alzheimer's 16 years ago. She now languishes in a semi-vegetative state in a care home run by Fraser Health, the regional health care authority in Abbotsford, BC. She is unresponsive in every way but one. She continues to eat when prodded with a spoon. Fraser Health refused to follow her directive to be allowed to die, when asked by the family.

Katherine Hammond, her daughter, is also a nurse. She asked that as an alternative, she wanted to take her mother home and with the help of palliative care nurses, allow her mother to die there. The response from Fraser Health was to put a "police order" on Margot Bentley's chart. The Abbotsford police were to be called if Hammond or her stepfather attempted to remove Bentley.

Katherine Hammond

Katherine Hammond, daughter of Margot Bentley.

The family went to court. Earlier this year, the court ruled that by opening her mouth, Margot Bentley was consenting to be fed. The judge went on to say that feeding with a spoon is not "medical care", it is "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 Centre for Elder Law. "The family is very clear that they are doing what their mother wanted. The hospital  says they can't deny food to someone in their care". 

The unresolved question – would a son or a daughter --  any legally appointed Representative under a modern Representation Agreement be permitted to refuse food or water on a patient's behalf? 

"We do not know," says Joanne Taylor, Executive Director of Nidus, BC's personal planning resource centre. "We have not had a case." James  adds, "The worst thing about this case is that it scares people into thinking they have absolutely no power over their lives as an illness progresses." 

Confusion is compounded, with Bentley coming as it did on the heels of the Carter decision of the Supreme Court of Canada that removed the prohibition against physician-assisted death in Canada.

si-bc-130708-abbotsford-alzheimers-feeding-bentley-1

Margot Bentley's family says they want the FHA to stop spoon-feeding their mother, who barely moves on her own. (CBC)

Katherine Hammond, Bentley's daughter, has run out of legal options. She continues to visit her mother. "When care givers – well meaning people – say, 'But we have to feed your mum.' I say this isn't about what you want, this is about what my mother wanted." 

Our documentary "In the Presence of a Spoon" was produced by Karin Wells.

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