More
- Classifieds
- Cars
- Deals
- Real Estate
- Rentals
- Photos
- Find&Save
- Obituaries
- Archives
- Topics
- Blogs
- WP Wine Club

I thought I understood health care. Then my Mom went into the ICU.

By Charles Ornstein,February 28, 2013

Charles Ornstein, his mother and his 3-year-old son Jude in December 2012… (/Courtesy of Charles Ornstein )

Charles Ornstein is a senior reporter for ProPublica and the board president of the Association of Health Care Journalists.

My father, my 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. Even before I flew into town, a ventilator was breathing for her, and 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. 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 looked to me for my thoughts. In our family, after all, I’m the go-to guy for all things medical. I’ve been a health-care reporter for 15 years: at the Dallas Morning News, the Los Angeles Times and now ProPublica. And since I have a relatively good grasp on America’s complex health-care system, I was the one to help my parents sign up for their Medicare drug plans, research new diagnoses and question doctors about their recommended treatments.

In this situation, like so many before, I was expected to have some answers. Yet none of my years of reporting had prepared me for this moment, this decision. In fact, I began to question some of my assumptions about the health-care system.

I’ve long observed, and sometimes chronicled, 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 cover counseling 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. And the degree of care provided to patients in that last year — how many doctors they see, the number of intensive-care hospitalizations — varies dramatically across states and even within states, according to the authoritative Dartmouth Atlas.

Studies show that this care is often futile. It doesn’t always prolong lives, and it doesn’t always reflect what patients want.

In an article I wrote for the Los Angeles Times 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 a lot of sense at the time. 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. And we wouldn’t get a chance to make it twice.

As my mom lay in the ICU, there was no question that her brain function was worrisome. In the hours after she was revived, she had convulsions, known as myoclonus, which can happen if the brain lacks oxygen. After that, she lay still. 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 like 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. I asked my writing partner in New York to do additional research. She, too, found nothing that would offer much hope.