Bioethics Forum Essay
A Responsible Death
As debates continue about the decisions people make about how to die, I wish to draw wider attention to the death of Paul Drier, as reported in the Globe and Mail, Canada’s national newspaper, a few weeks ago. There was little extraordinary about his death. He was a widower, had suffered from multiple health problems, and had been on kidney dialysis for 18 months. Considered to be too ill to qualify for a transplant, he decided to end dialysis. He died in a hospice in a Toronto suburb.
Two aspects of Mr. Drier’s death seem worth putting on record for bioethicists to remember. The first is the burden of dialysis. Mr. Drier had the unusual job of designing exterior walls for skyscrapers, and that explains how he describes dialysis. “I’ve stood 790 feet in the air on bamboo scaffolding,” he’s quoted as saying, “Not a whole lot has scared me. One thing I have a phobia about—that just turns me into Jell-O, I can’t stand it—is needles.” He then compares his experience of dialysis to someone with a phobia of snakes. “Here, hold this snake four hours a day, three days a week,” he says.
The Globe quotes a nephrologist saying that while some patients “tolerate the procedure well and are grateful for the extra years it gives them . . . others find it diminishes them, body and soul.” When I think about autonomy in treatment decisions, I want to remember Mr. Drier’s analogy of holding the snake.
The second issue on which I find Mr. Drier to be eloquent is dependency. I read some ethicists writing about people’s “fear of dependency” as if this were some sort of individual psychopathology, encouraged by societal stigmatization. Mr. Drier refuses prolonged, terminal dependency for reasons that pretty well describe how I’ve imagined the responsibility of parenthood in my life. Here’s what he told the newspaper: “My kids are like, ‘Dad, we’ll tear our lives apart and live with you and take care of you.’ I spent 30 years getting them to the point they’re at. Why on Earth would I do that to them? And for what purpose? To extend my miserable and painful existence?”
The word responsible gets tossed around a lot in discussions of choices in dying. For me, Mr. Drier’s death exemplifies what responsible means. His sense of responsibility explains why he would say that “God blessed me with kidney failure, because it’s an on and off switch.” Not every disease offers that switch, and responsibility demands that we negotiate multiple factors: available care facilities, medical options, legal context. I think not in principles but in fragments of stories. Mr. Drier’s “Why on Earth would I do that to them?” is a fragment I want to hold onto.
Arthur Frank is professor emeritus at the University of Calgary and a Fellow of The Hastings Center. His blog is found at arthurwfrank.wordpress.com.