Reports that scientists are working on a test to determine who is at risk for Alzheimer’s may sound like a medical breakthrough, but the chances are slim that hordes will roll up their sleeves to provide the necessary blood sample.
For at least a decade, there’s been a test for Huntington’s, the incurable, hereditary disease that combines aspects of Alzheimer’s, Parkinson’s and Schizophrenia. And yet, only 10 – to 20 per cent of people at risk for HD have been tested, according to University of Alberta health care expert Timothy Caulfield. “The majority of individuals simply don’t want to know,” explains Caulfield, especially since there is no cure for HD or Alzheimer’s.
Our squeamishness goes beyond fearing a disease that is likely to kill us. A Harris/Decima poll released this week indicates that 55 per cent of Canadians won’t even talk about end of life care. The poll, which was conducted for the Canadian Hospice Palliative Care Association, found that “being afraid of death,” an unwillingness to “upset family members,” and being “creeped out” were primary reasons to avoid preparing an Advance Care Directive, leaving instructions about resuscitation – or not – if they are to stop breathing or go into cardiac arrest.
Besides dying, the “spectrum of discussions that people don’t want to have,” says psychologist Keith Wilson of the University of Ottawa, includes when to give up driving the car, move into assisted living, or register as organ donors. By contrast, “people who are young and healthy are generally comfortable about talking about [end of life] as an abstraction,” he says, because they have “little awareness about what it might be like in the actual circumstances.”
Theoretical discussions about the long goodbye come to an abrupt halt, though, when there’s a sudden death. In the midst of such tragedies, decisions made with youthful invincibility can provide solace to grieving survivors. After champion freestyle skier Sarah Burke died, at 29, in a training accident, her family donated some of her organs so that others could live, and then made a public statement, encouraging people to sign up as donors. And a good thing, too. Canada’s record of 15.54 deceased donors per million people is paltry – even shameful – considering the need and the fact that countries such as Spain have double our rate of organ donation. Our numbers are increasing – up from 514 donors in 2011 to 540 in 2012 – but the improvement is slight.
I signed one of those little white donor cards with the green trim when renewing my driver’s licence, put it in my wallet and forgot about it. So did Michael Curran, publisher of the Ottawa Business Journal. But then his son Emerson, a University of Ottawa philosophy student, suffered massive head injuries in a fight at a house party, and was airlifted in critical condition to an Edmonton hospital. As he and his wife flew to their son’s deathbed, Ms. Curran recalled a conversation about the afterlife with Emerson, and how he had signed an organ donor card. For the Currans, honouring their son’s wishes became more than a living act of generosity – it continues to give them solace and a cause.
“Within two weeks of Emerson’s death,” Mr. Curran said in a telephone interview, “about a hundred of his friends got together in a local diner in Ottawa and 75 of them signed up to be organ donors.”
As for Mr. Curran, he retains his shrivelled green-and-white donor card as a keepsake from his university days, but he and his wife have done something far more effective: They’ve gone online to beadonor.ca and registered in an accessible database. And so have I. Next step: having the tough conversation about an Advance Care Directive.
This is the second in an occasional series about preparing for the inevitable.