Victoria doctor David Attwell believes the day will come when having an advance-care plan will be as normal as strapping on your helmet before you go biking or skiing. Ever since he hung out his shingle two decades ago as a family doctor, he’s been asking his patients about their end-of-life wishes as part of their annual physicals.
And that includes anybody who has reached the age of majority, not just the elderly or the terminally ill. “The leading cause of death for people between the ages of 25 and 40 is accidents,” he points out in a telephone conversation. “They need to have somebody who can represent them in situations where they can’t make decisions for themselves.”
Attwell is one of the authors of It’s Time to Talk: Advance Care Planning in British Columbia, a paper produced by Doctors of BC, the freshly rebranded BC Medical Association. Among the report’s recommendations: Integrate the advance-care plan with a patient’s records so that all health-care providers know the patient’s wishes.
Having such a regime in place might well have eased the burden of the family of Margaret Bentley. She is the former nurse who declared in a 1991 Statement of Wishes that she did not wish to be kept alive by artificial or heroic means if she became incapacitated.
Now in her 80s and suffering from late-stage Alzheimer’s disease, Bentley, who can no longer speak or recognize her grown children, lives in a seniors’ facility in Abbotsford, B.C. Her family has been fighting Fraser Health, the regional integrated health-care authority, over her care since 2011. Earlier this year, her daughter and her husband went to court seeking an injunction to prevent caregivers from spoon-feeding Bentley. Justice Bruce Greyell of the B.C. Supreme Court refused, arguing that spoon-feeding was “personal care” not health care. By opening her mouth to receive nourishment, Bentley was not simply responding to the pressure of a spoon against her lip, she was “communicating her consent.” The Bentleys were not the only people “shocked” by the ruling.
The Bentley case is not unique. Attwell and his colleagues hope their report will rip the shroud off the conversation about dying, normalize the process of making your wishes known to your family and health-care providers, help clarify what constitutes a legal document and encourage families to have open and frank discussions.
“If we are going to start a cultural change of normalizing discussions around end-of-life care, dying and death, we as physicians are best suited to initiate it because of the relationship and trust patients have in us,” Attwell says.
The problem is that even some doctors are afraid of the D word. They have spent years training to cure people – not to ease them out of this world. That’s why one of the goals of the report is to give doctors conversational tools and supports to launch the topic of dying with their patients, encourage them to go home and talk to their families, and ensure it becomes an ongoing dialogue.
The key is to consider an advance-care plan as a dynamic document to be updated as your health status changes – the long goodbye not only begins sooner than you think, it changes over time.