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When high costs meet "but it's my Mom"...

Posted by Dr. Lachlan Forrow  March 8, 2013 10:39 AM

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Everyone knows we need to do something to rein in out-of-control health care spending, especially for things that are truly wasteful.  But as we saw in the early days of health care reform, when the issue is care near the end of life, all someone needs to do is whisper "death panels", and then hear a US Senator say that the government may be planning to "pull the plug on grandma", and rational discussion about when spending is "wasteful", or about when care is possibly "futile", becomes truly impossible.

Honest conversations about this are hard to find. 

Charles Ornstein, board president of the Association of Healthcare Journalists, knows this subject well.  As he wrote in a 2005 article in the LA Times titled "LA Leads in Costly Care for the Dying":

Hospitals in Los Angeles County spend more on often-futile care for elderly patients at the end of life than medical centers elsewhere in California, according to a groundbreaking study to be released today.

Chronically ill Medicare patients stayed in the hospital longer, saw more doctors and received more intensive-care treatment in Los Angeles than in other metropolitan regions, including Sacramento, San Francisco and San Diego, according to research by Dartmouth Medical School. There was no evidence that the care prolonged patients' lives.

Indeed, the aggressive care in hospitals might actually have hastened their deaths, the authors said, based on previous studies showing that hospitalizations can lead to infections and other deadly complications."It is at least equally plausible that people are being harmed by overuse than that they're benefiting ... and we know that they're spending a lot more money," said Dr. Elliott S. Fisher, a Dartmouth professor and one of the study's authors.

But what if the patient is your own mother?  

Ornstein now knows.  In a deeply-moving recent essay in The Washington Post titled "I thought I understood health care.  Then my Mom went into the ICU", Ornstein recounts his family's experience when his mother was suddenly hospitalized, suffered a cardiac arrest, and was now being kept alive on a mechanical ventilator.  Her deep coma -- resulting from a severe brain injury from lack of adequate oxygen during the cardiac arrest -- was not improving, and it was increasingly clear that her prognosis was truly grim.

Was continued life support now "futile"?  Wouldn't continuing this "aggressive" and expensive life support be exactly the kind of thing he had come as a journalist and citizen to question? 

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 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?

One doctor said that perhaps more tests could be done.

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

On Friday morning, the final test result came back. It was bad news. In a sterile hospital conference room, a neurologist laid out our options: We could move my mom to the hospice unit and have breathing and feeding tubes inserted. 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. The hospital staff said it was unlikely that she would breathe on her own, but she did for several hours. She died peacefully, on her own terms, late that night — my dad, my sister and I by her side.

But still Ornstein's questions haunted him:

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.

Ultimately, Ornstein concluded that the central issue, at least for him and his family, wasn't the money -- it was that "we did what my Mom would have wanted."

But is that really the only issue for doctors, and our health care system?  Ornstein got back in touch with Dr. Professor Elliot Fisher, whom he had cited in his 2005 LA Times article.  Dr. Fisher was unequivocal:

“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. . . . We 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. I feel very strongly about that.”

Plenty of money? 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 and cases where 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.”

This is exactly right.  We do countless things in medicine today are truly wasteful.  But giving a patient a few more days in the ICU when the prognosis isn't quite certain, and when the family needs time to be sure that "we did what Mom would have wanted", isn't waste.  It's good care.
This blog is not written or edited by or the Boston Globe.
The author is solely responsible for the content.

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About the author

Lachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »

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