This is part of the Globe's in-depth series on the agonizing decisions surrounding end-of-life care in the 21st century. For the complete series, click here
Rheo Eybel was singing Brown Eyed Girl, gazing at his own brown-eyed partner on the dance floor. He was trying to ignore the karaoke singer on stage belting out the Van Morrison song – he’d gulped down enough liquid courage to get up and dance, but there wasn’t enough beer in the world to get him in front of a microphone.
Later that night in July, Mr. Eybel and his girlfriend, Harriet MacLean, walked back to the income property they were renovating that summer in Guelph, Ont., a half-hour north of their home in Fergus.
Mr. Eybel’s neck had started to ache. Whether he had hurt himself working on the house or at his job making truck parts, he couldn’t be sure. But a week later, the legs that had been dancing with abandon were going numb. By the month’s end, he wasn’t feeling a thing when he urinated.
“I knew then,” he said later, “that I was in trouble.”
That trouble was confirmed in a biopsy in Toronto on Aug. 1, when spine surgeon Joel Finkelstein opened Mr. Eybel’s neck to find “the most aggressive tumour possible of the spinal cord.”
And just like that, Mr. Eybel, then 44, faced a death sentence: A glioblastoma had infiltrated his spinal column, rendering him a quadriplegic. There was no effective treatment, no cure.
Placed on a ventilator in the critical-care unit at Toronto’s Sunnybrook Health Sciences Centre, Mr. Eybel could not speak, yet decisions on how and where he was to die were being rushed at him with urgency. He had quickly given Ms. MacLean his power of attorney.
The news was devastating. “I don’t know what we’ve done so wrong,” said Ms. MacLean, a straight-talking woman with a blond bob.
Nurse Bill Bisley, with blond spiky hair and a gold hoop in his left ear, tried to comfort her. These events were random tragedies, he told her, not the patients’ faults – he had seen that, in this unit, time and again.
So had everyone in the critical-care centre at Sunnybrook, the hospital with more intensive-care beds – 120 – than any other site in Canada. Here, death is a constant, almost routine event, claiming one in five patients who enter. Yet few who come to units like this have given advance directions, written or verbal, about how they wanted to be cared for in the event of a crisis.
For two-and-a-half months, a Globe and Mail reporter and photographer were granted unique access to one 20-bed unit here. They followed the cases of four patients and their families especially closely, both in the unit and for months afterward: Some had made decisions in advance and others had not, but all faced choices they could hardly have imagined before.
It is an increasingly vital matter for all Canadians. Historically a place for those who’d suffered traumatic injuries, this kind of unit is becoming a more universal place of last chances. Cancer patients, the frail elderly and those with progressive, underlying diseases are going out not with a bang but with the bleep, bleep, bleep of machines – the 21st-century way of death.
Too few of us talk about the consequences of our tendency to seek high-tech interventions, even in the face of Canada’s aging population: How much treatment is too much? When do you withdraw life support – “pull the plug”? And who decides?
“I worry that as we have put medicine out there as a potential saviour and, in fact, almost a new religion over the last 100 years,” said Rob Fowler, one of about 20 critical-care physicians here, “people have increasingly bought what we’ve sold: that cancer can be beaten and every death is a preventable death – that every death is, in some way, a failure.”
In Mr. Eybel’s case, he had to decide whether to move to a palliative-care unit, where he would receive relief for his pain and other symptoms and be allowed to die a natural death. To do so, he would need to sign a Do Not Resuscitate order, commonly known as a DNR, agreeing not to be revived should his heart stop. Mr. Bisley took Mr. Eybel outside in his wheelchair, along with Ms. MacLean, to weigh this issue.
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