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'How Mom's Death Changed My Thinking About End-of-Life Care'

A health care reporter shares his family's story

On Friday morning, the final test came back. It was bad news. In a sterile hospital conference room, a neurologist laid out our options: We could move my mom to the hospice unit and have breathing and feeding tubes inserted. Or we could disconnect the ventilator.

We decided it was time to honor my mom's wishes. We cried as nurses unhooked her that afternoon. The hospital staff said it was unlikely that she would breathe on her own, but she did for several hours. She died peacefully, on her own terms, late that night — my dad, my sister and I by her side.

I don't think anyone can ever feel comfortable about such a decision, and being a health reporter compounded my doubts.

I was fairly confident that we did what my mom would have wanted. But a week later, when I was back in New York and 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.

Curious how experts would view it, 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, subject of a memorable 2009 piece in The New Yorker by Atul Gawande, for its seemingly out-of-control Medicare spending.

I asked Fisher: Did he 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 my 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. ... We have plenty of money in the U.S. health care system to make sure that we're supporting families in coming to a decision that they can all feel good about. I feel very strongly about that."

Plenty of money? 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 and cases where 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.

The past few weeks have been the most difficult of my life. I hope what I learned will make me a better, more compassionate journalist. Most of all, I will always remember that behind the debate about costs and end-of-life care, there are real families struggling with real decisions.

Senior reporter Charles Ornstein is board president of the Association of Health Care Journalists and can be reached at charles.ornstein@propublica.org.

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VIDEO EXTRA

A GIFT OF HOSPICE: A family moves through the end of a life, with the help of dedicated hospice workers.

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