Knowing when to let go

My father, sister and I sat in the near-empty Chinese restaurant, picking at our plates, unable to avoid the question that we'd gathered to discuss: When was it time to let mom die?

It had been a grueling day at the hospital, watching — praying — for any sign that my mother would emerge from her coma.

Three days earlier, she'd been admitted for nausea; she had a nasty cough and was having trouble keeping food down. But while a nurse tried to insert a nasogastric tube, her heart stopped.

She required CPR for nine minutes. A ventilator was breathing for her. Intravenous medication was keeping her blood pressure steady. Hour after hour, my father, my sister and I tried talking to her, playing her favorite songs, encouraging her to squeeze our hands or open her eyes.

Doctors couldn't tell us exactly what had gone wrong, but the prognosis was grim, and they suggested that we consider removing her from the breathing machine. And so, that January evening, we drove to a nearby restaurant in suburban Detroit for an inevitable family meeting.

My father and sister asked my thoughts. I've been a health care reporter for 15 years. In this situation, I was expected to have some answers. Yet none of my reporting had prepared me for this moment.

In fact, I began to question some of my assumptions about the health care system.

I've long observed the nasty policy battles surrounding end-of-life care. And like many health journalists, I rolled my eyes when I heard the phrase "death panels" used to describe a 2009 congressional proposal that would have allowed Medicare to reimburse physicians who provided counseling to patients about living wills and advance directives. The frenzy, whipped up by conservative politicians and talk show hosts, forced the authors of the Affordable Care Act to strip out that provision before the bill became law.

Politics aside, I've always thought that the high cost of end-of-life care is an issue worthy of discussion. About a quarter of Medicare payments are spent in the last year of life, according to recent estimates. Studies show that this care is often futile.

In an article I wrote in 2005, I quoted a doctor saying: "There's always one more treatment, there's always one more, 'Why don't we try that?' … But we have to realize what the goals of that patient are, which is not to be in an intensive-care unit attached to tubes with no chance of really recovering."

That made sense then. But did it apply to my mom?

We knew her end-of-life wishes: She had told my dad that she didn't want to be artificially kept alive if she had no real chance of a meaningful recovery. But what was a real chance? What was a meaningful recovery? How did we know if the doctors and nurses were right? 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. When that patient was my mother, what mattered was that we had to live with whatever decision we made.

As my mom lay in the ICU, there was no question that her brain function was worrisome. When the neurologist pricked her with a safety pin, she didn't respond. When he touched her corneas, they didn't reflexively move.

I began checking the medical literature, much as I do as a reporter. I didn't find anything encouraging. Studies show that after 72 hours in a coma caused by a lack of oxygen, a patient's odds of recovery are slim to none. But couldn't my mom beat the odds?

Just last summer, my dad's heart stopped, and it took more than 10 minutes to revive him. Doctors said a full neurological recovery was unlikely. They asked about his end-of-life choices. Mom and I stayed up late talking about life without him and discussing the logistics of his funeral. But he rebounded and was home within weeks, back to his old self. I came away questioning why everyone had been so sure he would die.

What if they were wrong about mom too?

Over dinner at the Chinese restaurant, we decided to not rush to a decision. We would seek another medical opinion. If the tests looked bad, we would discontinue aggressive care.

A second neurologist came in the next morning. After conducting a thorough exam, this doctor wasn't optimistic, either, but she said two additional tests could be done if we still had doubts.

If more tests could be done, my dad reasoned, we should do them. My sister and I agreed.

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 put my mom on hospice and insert breathing and feeding tubes. 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. 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.

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.

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