We decided it was time to honor my mom's wishes. We cried as nurses unhooked her that afternoon. She died peacefully late that night — with us by her side.
About a week later, when I had some emotional distance, I wondered how our thinking and behavior squared with what I'd written as a reporter. Did we waste resources while trying to decide what to do for those two extra days? If every family did what we did, two days multiplied by thousands of patients would add up to millions of dollars.
So I called Elliott S. Fisher. I've long respected Fisher, a professor of medicine at Dartmouth and a leader of the Dartmouth Atlas. The Atlas was the first to identify McAllen, Texas, the subject of a memorable 2009 piece in The New Yorker by Atul Gawande, for its seemingly out-of-control Medicare spending.
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Did Fisher consider what my family did a waste of money?
No, he said. And he wouldn't have found fault with us if we decided to keep mom on a ventilator for another week or two, although he said my description of her neurological exams and test results sounded pessimistic.
"You never need to rush the decision-making," he told me. "It should always be about making the right decision for the patient and the family."
How did this mesh with his view that too much money is spent on care at the end of life? He said his concern is more about situations in which end-of-life wishes aren't known or doctors push treatments for terminal illnesses that are clearly futile and that may prolong suffering.
"I don't think the best care possible always means keeping people alive or always doing the most aggressive cancer chemotherapy," he said, "when the evidence would say there is virtually no chance for this particular agent to make a difference for this patient."
I left the conversation agreeing with Fisher's reasoning but believing that it's much harder in practice than it is in theory. You can know somebody's wishes and still be confused about the appropriate thing to do.
Ornstein is a senior reporter for ProPublica and the board president of the Association of Health Care Journalists.