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Read up, and ‘Life You Save’ may be your own

Patient advocate and leading medical malpractice attorney Patrick Malone instructs readers how to find the best medical care in his new book, “The Life You Save: Nine Steps to Finding the Best Medical Care — and Avoiding the Worst.” The following is an excerpt.
/ Source: TODAY books

Patient advocate and leading medical malpractice attorney Patrick Malone instructs readers how to find the best medical care in his new book, “The Life You Save: Nine Steps to Finding the Best Medical Care — and Avoiding the Worst.” The following is an excerpt.

Chapter 2: Right Now: Get Your Records and Read ThemHere’s the best and easiest advice for avoiding medical victimhood and attaining the best-quality health care, and it’s also Step One: Get your medical records. Get them today. Read them; organize them. What you see in there may surprise or shock you, and it might just save your life.

Every day across the country, fax machines and letter carriers deliver thousands of letters from specialist doctors and laboratories reporting their findings on the patients they have probed, prodded, and slid into imaging machines. Those reports are nearly always addressed only to the referring doctor. The patient who is the subject of the letter is rarely included in the correspondence.

I remember how startled I was, one day five years ago, when going through the usual stack of junk mail at home, I found a letter from an orthopedist in Boston reporting his recommendations about my bad hip to my doctor in Washington. I was grateful to have been included; it’s the only time that has ever happened to me. Most of the time, the reports of the specialists sail silently past us as they travel from specialist to generalist.

The idea, of course, is that the specialist will have explained her findings and recommendations in detail to us patients, and so copying us on the letter would be superfluous. Richard’s dermatologist insisted, when I questioned him, that that must have happened in 1998 when he recommended removal of the then-pencil-eraser-size mole on his lower back. “I would always explain it to the patient,” he said.

“One hundred percent always?” I asked.

“Well, nothing is 100 percent,” he conceded.

For his part, Richard said no one ever told him to have the mole removed — not in 1998, not in 2004, not any other time — until the fateful day he went to the dermatologist again after his wife noticed the color change. Richard’s medical files documented a spotless record of following up on every recommendation ever made by his doctors: every blood test, every EKG, every X-ray, every referral to a specialist. Why would he not have a mole taken off his lower back when it was the size of a pencil eraser?

These swearing contests — “We must have told you”; “No, you didn’t” — could only happen in a system in which patients do not have routine access to all their health records, a system in which specialists routinely write detailed reports of their findings to the referring doctors but fail to add a critical line at the bottom of the letters: “CC: patient.”

Our current system of medical record keeping combines the worst of twentieth-century technology with nineteenth-century paternalism: The technology generates lots of paper reports that take time to read, sort, file, and retrieve, all by hand; the paternalism assumes the subject of those reports, the patient, doesn’t need to read them. Will the doctor’s staff remember to leave the report out before sticking it in a file drawer, so the doctor can read it first? Will the doctor remember to go through the entire stack of reports on his desk? Will the doctor read all the way to the bottom of each report? Our medical system has thousands of these communication synapses — molecule-size gaps between sender and recipient. Most of the time, information is smoothly transmitted and received across these synapses, the way it’s supposed to happen.

But a system without backup methods of communication does not tolerate failure. So all that has to happen is for one human being to make one human mistake — to misfile, to forget to read, to neglect to mention something to the patient — and then the system comes screeching to a crash. Yet in the twenty-first century we, the patients, can fix this gap without any high-tech electronic system. We just need to read, and make sure we understand, what’s being written about us.

So how do you make the system work for you? First, you have to know your rights. The culture of medicine is so resistant to transparency (to use the latest jargon for old-fashioned candor and honesty) that you’d almost think there’s a law barring patients from learning what’s in their medical records. To the contrary, the law says you have every right to know. Some states go so far as to say that you, the patient, own your own records. And in every state, patients have a right to see every scrap of paper in a doctor’s file and to have a copy made of every X-ray image (with copying charges usually assessed against the patient for the inconvenience caused to the provider).

Second, you need to appreciate why and how we can be our own worst enemies. Psychological forces make a lot of us hesitant to ask for our medical records. No one is eager for bad news, so when it comes to medical information, it’s easy to assume that no news is good news.

We figure that someone somewhere will let us know if we’ve had a worrisome test result. That’s the way it’s supposed to work, of course.

But welcome to the real world, courtesy of medical blogger Dr. Rob Lamberts of Augusta, Georgia, who explains, “A doctor’s office is always on the brink of chaos — with an incredible amount of information coming in and going out, a large number of phone calls, insurance company headaches, and personnel situations that can throw the best system flat on its face. People forget that there are hundreds of other patients with thousands of test results the office is dealing with.”

So one rule Dr. Lamberts emphasizes: “Never assume that no news on test results is good news.” Dr. Lamberts is well credentialed, with board certification in both internal medicine and pediatrics, and he runs a sophisticated, organized office with electronic medical records. So if someone like him talks about the “brink of chaos,” you can imagine how much worse it is in a less well-run office.

Our internal resistance to requesting our own medical records has deeper roots than the no-news-is-good-news assumption. It’s a simple enough step to ask for your own records, but it’s a radical step because you are challenging authority, and that can feel wrong. Researchers have found that humans have a deep-seated attachment to the established and the familiar, even when it can be shown that established ways threaten our very survival.

That explains why societal systems like communism and apartheid can hold the allegiance of their subjects long after any rational outsider can see the system is broken, and it also explains why we persist in trusting an antiquated medical communication system long after we know that something better is needed.

All of the above is to say that I don’t minimize how hard it can be to take this first step of the nine steps I advocate for taking charge of your own health care. If you put it off, if you wait until a health crisis confronts you, it will be far more difficult to take this first step, because our natural tendency to cling to the familiar becomes stronger the more threatened we feel. So it will never be easier than it is right now.

And I can predict one more thing: If you try this first step, you will find that obtaining, reading, and organizing your own medical records will lead you naturally to the other steps necessary to take charge of your own health care. It will become second nature to ask questions, to evaluate, and to make informed decisions that maximize your chances of a long, healthy life.

Reprinted with permission from “The Life You Save: Nine Steps to Finding the Best Medical Care — and Avoiding the Worst” by Patrick Malone (Da Capo Lifelong Books).