When it's your turn: Expert agonizes over his mom's end-of-life care

Health care writer discusses difficult end-of-life decisions with his own mother

Writing in ProPublica and the Washington Post this week, Charles Ornstein explained how his long experience as a health care reporter did not prepare him for the difficult end-of-life decisions he faced after his own mother slipped into a coma.

Ornstein is a Pulitzer Prize-winning reporter and the president of the Association of Health Care Journalists; he notes that, like many who work in the industry, he'd become the de facto health care expert when his family faced health care decisions. Yet "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," Ornstein wrote, adding, "I began to question some of my assumptions about the health care system."

Ornstein's mother Harriet had suffered from Parkinson's disease for 10 years before being admitted to a Detroit-area hospital for nausea, a nasty cough, and an inability to keep food down. When a nurse tried to insert a nasogastric tube, Harriet's heart stopped and she required CPR for nine minutes. She slipped into a coma and was put on a ventilator to breathe, Ornstein writes.

Presented with a pessimistic prognosis and knowing her wishes not to be kept alive on a ventilator, Ornstein and his family faced an end-of-life scenario like so many he had written about in articles past. "I've always thought that the high cost of end-of-life care is an issue worthy of discussion," Ornstein wrote. He noted that an estimated 25% of Medicare payments are spent in the last year of life.

In the case of Ornstein's mother, it took two days to obtain a second opinion from a neurologist—who confirmed the pessimistic outlook for his mother—before having her ventilator removed and letting her die. In the aftermath, Ornstein continued to wonder whether those days taken to re-confirm what the family already knew were a waste of precious health care resources and money, he wrote.

Expert: System has 'plenty of money' to help families with end-of-life choices

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

Ornstein consulted with the head of the Dartmouth Atlas Project—Elliott Fisher—and was surprised when Fisher told him that "[w]e 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."

Specifically, Fisher felt that the steps Ornstein took and the two days—or even if had it been two weeks—were justifiable.

Rather, Fisher said he is concerned with families who do not know their loved one's end-of-life wishes and with health care providers who push for treatments that may prolong patient suffering. "I don't think the best care possible always means keeping people alive… when the evidence would say there is virtually no chance for this particular agent to make a difference for this patient," Fisher told Ornstein.

Ornstein concluded that the experience will help him remember that "behind the debate about costs and end-of-life care, there are real families struggling with real decisions" (Ornstein, ProPublica/Washington Post, 2/28).

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