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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

This story was copublished with The Washington Post.

Ornstein family, end of life care

Writer Charles Ornstein with his mother, Harriet, and son Jude, 3, in December 2012. When his mother fell ill a month later, Ornstein faced a difficult choice: move his mom to a hospice unit and have breathing and feeding tubes inserted or disconnect the ventilator. — Courtesy of Charles Ornstein via ProPublica

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. 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, 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 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 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. 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.

But couldn't my mom beat the odds? Harriet Ornstein was a feisty woman. At age 70, she had overcome adversity many times before. In 2002, weeks before my wedding, she was mugged in a parking lot and knocked to the pavement with a broken nose. But she was there to walk me down the aisle — black eyes covered by makeup. She had Parkinson's disease for a decade, and in 2010 she suffered a closed head injury when a car backed into her as she walked down a handicapped ramp at the drugstore. Mom persevered, continuing rehabilitation and working to lead as normal a life as possible. Might she not fight through this as well?

Truth be told, I was already somewhat skeptical about physician predictions. Just last summer, my dad's heart stopped, and it took more than 10 minutes of CPR to revive him. Doctors and nurses 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 despite it all, he rebounded. He was home within weeks, back to his old self. I came away appreciative of the power of modern medicine but questioning why everyone had been so confident that he would die.

Also weighing on me was another story I wrote for the Los Angeles Times, about a patient who had wrongly been declared brain-dead by two doctors. The patient's family was being urged to discontinue life support and allow an organ-donation team to come in. But a nursing supervisor's examination found that the 47-year-old man displayed a strong gag-and-cough reflex and slightly moved his head, all inconsistent with brain death. A neurosurgeon confirmed her findings.

No one was suggesting that my mom was brain-dead, but the medical assessments offered no hint of encouragement. What if they were off-base, too?

Over dinner at the Chinese restaurant, we made a pact: We wouldn't rush to a decision. We would seek an additional medical opinion. But if the tests looked bad — I would ask to read the actual clinical reports — we would discontinue aggressive care.

A neurologist recommended by a family acquaintance 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.

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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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