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