Learning From a Doctor's Sad Experience

Tuesday, June 5, 2007

The book's title, "What You Don't Know Can Kill You," telegraphs physician-author Laura Nathanson's outrage, which is the theme of this often helpful guide to navigating the treacherous waters of the health-care system.

Nathanson's book (HarperCollins, $15.95) bills itself as "a radical guide to conquering the obstacles to excellent medical care." It's hard to see how the notion of gathering medical records, reading pathology reports and questioning doctors as Nathanson recommends is radical. But given the passivity of many Americans who typically spend more time shopping for a car than for a hospital or doctor, maybe it is.

Her experience is tragically instructive. The book is dedicated to the memory of her husband, Chuck, who died in 2003, less than three years after half a dozen doctors missed or misdiagnosed his rare and initially quite treatable cancer.

By the time the peach-size tumor was accurately diagnosed, a process that took about two years, it was very advanced and extremely difficult to treat. As Nathanson notes, accurate and timely diagnosis is the key to survival or even cure.

"You cannot rely on today's medical system to keep you healthy, safe and alive," writes Nathanson, a pediatrician, although this claim is unlikely to surprise anyone who has recently experienced the unraveling patchwork that constitutes the health-care system. No one, she notes, is in charge, and the system is absurdly complicated, even for a physician.

But, she writes, "if I had taken the precautions set forth in this book, my husband of thirty years might be with me today."

It wasn't until things had gone horribly wrong that Nathanson collected and read his medical records, only to discover that the cancer that would kill her husband was visible on his first chest X-ray. Yet none of the many doctors who treated him, it seems, did an adequate follow-up.

Using her husband's medical records as a guide, Nathanson advises patients how to avoid making similar mistakes. She defines medical jargon, highlights words that may signal what she terms "fuzzy logic" in reasoning and diagnosis, and tells patients how to spot red flags in pathology reports that can seem impenetrable to all but the most medically savvy.

Patients, she advises, should ask -- or, if necessary, demand -- a second opinion, or in certain cases a second biopsy.

Her chapters about how to act as a patient's "sentinel" in the hospital -- and why it's so important to have one -- are sensible and will resonate with anyone who has spent the night with a sick relative on an understaffed floor: Help the nurses but don't get in their way; ask questions without being confrontational; and, most important, don't be afraid to make a scene if your charge is in trouble and your requests for help go unheeded.

Nathanson recounts one harrowing incident when she started yelling at the nurses' station at 4 a.m., convinced that her husband was crashing, even though his lab tests didn't look bad. He was, in fact, deathly ill, and her yelling prompted a quick call to a surgeon who immediately inserted a chest tube.

One piece of advice, however, borders on the bizarre. She advises those in an erotic relationship to try to maintain it in the hospital. "Nothing is so empowering, noninvalid and nonhospital-like as furtive hanky-panky," she writes, "especially with the danger of being walked in on."

Perhaps. But readers will probably find Nathanson's advice about avoiding hospitalization more useful.

-- Sandra G. Boodman

© 2007 The Washington Post Company