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  • BIOETHICS FORUM ESSAY

What if the Patient is Your Mother?

The problems with end-of-life care are clear enough. Patients and their families/significant others still have trouble talking with one another and their doctors about how they would and would not want to spend their final days. All too often, for many reasons, patients’ wishes are not honored. Overtreatment persists, with incentives in the health care system to prolong the dying process and to waste health care dollars.

The solutions, however, are far from clear, as Charles Ornstein, a veteran health care journalist, discusses very movingly in an article in ProPublica about his mother.

Shortly after Harriet Ornstein was admitted to the hospital, her heart stopped. It was revived with CPR, and then she was put on a ventilator. Doctors said that the prognosis was grim and suggested that the family consider removing her from the breathing machine.

The family knew Harriet’s end-of-life wishes. She didn’t want to be artificially kept alive if she had no chance of a meaningful recovery. That seemed to be the situation she was in. And yet Ornstein, his father, and his sister still didn’t know if taking her off the ventilator was the right thing to do. What if the medical assessment was wrong?

The family had reason to wonder. Last summer, doctors were wrong in determining that Charles’s father would not pull through after his heart stopped beating and revived after 10 minutes of CPR. “They asked about his end-of-life choices,” Ornstein wrote. He and his mother began discussing his funeral. But, despite the odds, he made a full recovery within weeks. Ornstein wondered how the doctors could have been so confident that he would die.

The family resolved to get a second opinion on Harriet’s condition. They consulted with a neurologist who suggested two additional tests. Two days later, the results confirmed the earlier prognosis. At this point, they decided to honor their mother’s wishes. “She died peacefully, on her own terms, late that night – my dad, my sister and I by her side.”

A week later, Ornstein began to wonder if his family’s decision was consistent with what he had learned as a health care reporter about the problems with futile end-of-life care. “Did we waste resources while trying to decide what to do for those two extra days?” he asked.

He posed this question to Elliott S. Fisher, a professor of medicine at Dartmouth and a leader of the Dartmouth Atlas of Health Care, which tracks disparities in health care spending. Fisher said no. “You never need to rush the decision-making,” he said. “It should always be about making the right decision for the patient and the family.”

But what if the Ornsteins had taken two weeks or two months to make their decision? How much time is too much? At what point would they have been wasting money on futile care?

Daniel Callahan, co-founder of The Hastings Center, who has devoted much of his career to considering health care at the end of life and its cost implications, said that the unwillingness to give up hope, however improbable the odds, is part of the problem. “That way of thinking could lead families to keep searching for still another second opinion and a third, etc.,” he said.

Of the Ornsteins’ case, he said: “The combination of a patient advance directive not to treat if that would be of no benefit and a basically hopeless diagnosis by the first round of doctors should have been enough. Termination of treatment would have been the right thing to do.”

But, as Charles Ornstein discovered, it’s easier to identify the right thing to do when considering the health care system as a whole or the cases of strangers than when making the definitive decision for your mother – even when you know your mother’s wishes. “In all my reporting, I’d never realized how little the costs to the broader health-care system matter to the family of a patient,” he wrote. “When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn’t get a chance to make it twice.”

In the weeks following his mother’s death, he was left hoping that what he learned will make him a better, more compassionate journalist. “Most of all,” he wrote, “I will always remember that behind the debate about costs and end-of-life care, there are real families struggling with real decisions.”

Susan Gilbert is The Hastings Center’s public affairs and communications manager.

Posted by Susan Gilbert at 04/01/2013 09:57:24 AM |

Published on: April 1, 2013
Published in: Chronic Conditions and End of Life Care, End of Life

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