Where Have the Patient Interview and Physical Exam Gone?

“No one cares what you find on physical exam; it’s what the tests show,” Dr. Lisa Sanders said. “And yet it’s clear the physical exam has important things to tell us. It can direct where we look. It can tell us – show us in a very real way – what’s going on.”

By Karen Thurston Chavez

My son’s last EKG scared me witless. It spit out its graph paper with its squiggly red lines, and along the diagnoses listed across the top: “possible Long QT syndrome.” (Long QT syndrome is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats.)

I knew enough about Long QT to know it’s a serious and potentially fatal. I know my son, William, has scimitar syndrome/partial anomalous pulmonary venous return, along with mild right ventricular hypertrophy and a mild narrowing of his right pulmonary artery, but Long QT syndrome?

I waited anxiously for our pediatric cardiologist Dr. Jay Fricker to arrive in the exam room and halt my increasing panic. And he did – in his thoughtful and methodical way in his calm and soothing voice.

That cardiology checkup changed the way I think about my family’s physicians – all of them: our pediatric cardiologist, heart surgeon, pulmonologist, pediatrician, family internist, urgent care physicians, psychiatrist, general surgeon, radiologist and all of our nurses.

I pay far more attention to how much time a doctor spends interviewing and examining me or my children than I do on what kind of diagnostic test he or she might suggest or order.

Thank you, Dr. Fricker. Our pediatric cardiology appointment went a little like this:

“Dr. Fricker, I looked at William’s EKG report. What does that mean? It says Long QT syndrome. I know what it is, but why does it say it’s a possible diagnosis?

Dr. Fricker gave me his calm, reassuring smile. “Ah. Diagnostic tests. Do you ever listen to NPR?”

“Yes,” I answered, wondering what in the world this had to do with the EKG report.

“Did you hear the interview with Dr. Lisa Sanders?” he asked.

“No,” I confessed, wishing he’d get to his point!

Dr. Fricker explained: “She’s the real doctor behind the TV show 'House.' She talked a lot about how we, doctors, don’t spend enough time talking and listening to our patients and spend too much running diagnostics. We’ve come to rely too much on tests – blood tests, X-rays, EKGs, echos.

“You’re an established patient now,” Dr. Fricker continued, “but technically, I should have come in here and talked to you first, asked how William’s doing, how his activity levels are, appetite, how you feel he’s doing. Instead, we did an ultrasound and an EKG first – an EKG that has shown you a report that lists a potentially serious problem.”

“So why would it say William could have Long QT?” I asked him.

He didn’t use these exact words, but Dr. Fricker’s explanation boiled down to this: Some EKG machines don’t provide possible diagnoses; some machines do. And with the machines that do, the possibilities may or may not be correct because it’s just a machine using some sort of a generic formula to determine various possible diagnoses.

William’s EKGs have never been normal. Even after corrective congenital heart surgery, he still has abnormal EKGs. The day of his cardiology checkup, the EKG machine read William’s quirky heartbeat and decided he might have Long QT syndrome.

Dr. Fricker read the other possible diagnosis on the EKG strip: right ventricular hypertrophy. That, he said, was probably correct. The right side of William’s heart worked hard those first 27 months of his life, and it still hasn’t returned, and may never return, to a normal size. Perhaps William’s right ventricle has been thicker than normal since he was born.

Dr. Fricker spent a lot of time with us, asking about William’s appetite, any unusual situations, fatigue, changes in activity levels. How did I feel William was doing? Dr. Fricker did his own physical exam. He talked to William, and asked him how he was feeling, whether he played any sports, what he eats.

“William, do you like pizza?” Dr. Fricker asked.

“Yes,” William answered.

“Well. Eat more of it. Let’s see if we can put some weight on you,” Dr. Fricker said, and smiled. “What about ice cream. Do you like ice cream?”

“I love ice cream!” William replied.

“Eat more of that, too!” Dr. Fricker said. “Do you hear that Mom? William should eat a lot more pizza and ice cream.” We all laughed.

Dr. Fricker told us more about the interview he’d recently heard on NPR with Dr. Lisa Sanders. In that interview, show host Dave Davies talked to Dr. Sanders about the lost art of the patient interview, and the lost science of the physical exam.

Dr. Sanders said she believes the physical exam is dead.

“We’re taught the physical exam in medical school, but it doesn’t take long for you to realize … no one cares what you find on physical exam; it’s what the tests show. And yet it’s clear, the physical exam has important things to tell us. It can direct where we look. It can tell us – show us in a very real way – what’s going on.”

Doctors don’t listen as well as they should, Dr. Sanders said. “…Shame on us. Because it’s been known that the patient is the source of the information that … up to 90 percent of the time, will give us the answer to the questions: What’s going on? What does this patient have?

“But we don’t listen to patients,” she said.

Amen, Dr. Sanders. I can attest to that. William’s first pediatrician was a terrible listener. No matter what ailment William may have had, that pediatrician always traced it back to germs at daycare. Apparently, there was no other reasonable explanation for William’s often-serious illnesses.

Ever since that cardiology visit with Dr. Fricker, I have paid closer and closer attention to how health-care professionals approach us during our appointments.

At Shands Children’s Medical Plaza in Gainesville, where we go for our heart and lung checkups, 97 percent of the time, we are thoroughly interviewed, nurses and doctors perform complete and necessary diagnostic screenings (height, weight, pulse oximetry, blood pressure, etc.), and we have echocardiograms, EKGs, pulmonary function tests and, sometimes, X-rays.

Doctors listen to William’s heart and lungs, while he sits and lays in various positions. They look in his ears, nose, mouth, eyes. Squeeze his hands, feet, fingers, toes. Mash on his belly, check his throat and neck. In the pulmonary clinic, they quiz him about his asthma medications – what he takes, how he takes it, and if he thinks it makes him breathe better.

At home in Tallahassee, our physicians are employed by Capital Health Plan and they run their practices similarly to the way Shands does. Thoroughly – with patient/parent interviews and physical exams first, with diagnostic tests (if necessary) next on the list.

It was this thoroughness through Capital Health Plan that finally led to William’s accurate diagnosis, after other physicians failed to listen or thoroughly examine our son.

Dr. Lisa Sanders’ NPR interview should be required listening for anyone who sees a medical professional, and everyone who is or wants to be a medical professional.

That cardiology appointment and listening to Sanders' interview has changed the way I approach our doctors’ visits.

If you are my doctor or my sons’ doctor, and you don’t talk to us and examine us and get a thorough patient history, then you better pull up a stool, grab your pen and paper and get comfortable. Because I’m going to give it to you anyway. We deserve nothing less.

Karen Thurston Chavez is founder and co-executive director of Broken Hearts of the Big Bend. Since her son’s initial two misdiagnoses and eventual correct diagnosis, Karen tries to stress to all parents the importance of advocating for your child’s health and your right to quality medical care by board-certified health-care professionals.

What I Know for Sure

Alyssa and I have known each other since 2002, long before we had our second babies -- our heart babies. In June 2006, when my son had open-heart surgery, Alyssa organized meals, collected baskets of goodies, and took care of our house and critters while we were gone. Her support, as well as support she rallied from others, got us through. She did it for no other reason than she cared. She had no way of knowing that 2-1/2 years later, she would face a similar crisis. When Alyssa learned her unborn daughter had complex CHD, Broken Hearts of the Big Bend rallied for her. For no other reasons than because we cared and we understood.

What I Know for Sure

By Alyssa Brown

On Aug. 21, 2008, when I was five months pregnant, during what we believed to be a simple follow-up ultrasound, my husband Shevie and I learned that our unborn daughter had multiple complex congenital heart defects (CHD). Devastated does not begin to describe how we felt.

When you learn something is wrong with your unborn baby’s heart – her heart – it is hard not to think the worst. It’s even harder to imagine you somehow will emerge from the harrowing experience you now know is ahead of you better than you were when you entered it. When you don’t know the direction of the tunnel you are in, or where its end is, is it really possible to see the light?

For me, it was impossible to see the light during that critical time, but it was impossible for me not to believe in it. After all, since 2006, I had been a volunteer with Broken Hearts of the Big Bend. I worked with Karen Thurston Chavez when she started the group in June 2006, the same month her son, William, had open-heart surgery at Shands Children’s Hospital.

I had no idea at that time the work Karen was doing to educate and unite families in the Big Bend area who were faced with CHD would be so relevant to me. I had no idea when I was volunteering, I was helping to make a better life for a baby I then had no idea I was going to have.

What I do remember is wondering how the parents in the group managed to be so brave. I remember looking at the kids and thinking many of them looked so healthy that if I didn’t know they had heart defects, I wouldn’t have suspected it at all.

What I learned from Karen and others in the group through volunteering and just talking to them prevented Shevie and me from having to blindly navigate our way through Tallahassee’s medical community, which, for the record, does not include a board-certified pediatric cardiologist. We knew that to give McKenna the best chance at not only a good outcome but mere survival, she needed to be born at Shands at the University of Florida under the care of its Congenital Heart Center’s pediatric cardiologists.

To make this happen, Shevie and I traveled back and forth to Gainesville multiple times after the fateful ultrasound. Two weeks before my due date, we left home and checked into a hotel in Gainesville. Leaving Victoria in Tallahassee with her father (my ex-husband), and his family was hard because I did not know when I would be able to come home to her. I was thankful, though, that she got to stay with family and I wondered what other families, who didn’t have anywhere to leave their other children, did in such circumstances.

While in Gainesville, we spent 15 days walking the mall and other places trying to get my labor going, but were unsuccessful. On Nov. 25, we went in for an induction. McKenna was born the next morning at a healthy 7 lbs. 1 oz. After her birth, doctors confirmed she had double-outlet right ventricle, hypoplastic left ventricle (not full-blown hypoplastic left heart syndrome) and atrial and ventricular septal defects. We were so relieved because that was so much better than her original diagnoses of hypoplastic left heart syndrome, double-outlet right ventricle, transposition of the great arteries and atrial and ventricular septal defects. The plan for McKenna’s CHDs included the three-stage repair – the Blalock-Taussig Shunt, the bi-directional Glenn and the Fontan. She did so well after birth, she did not need the BT shunt, but did require a heart catheterization to widen her ASD to help her heart work more efficiently. She had her Glenn done in March 2009 and will have her Fontan in the next year or two.

The next five months were simultaneously sweet and filled with anxiety. In addition to the typical trials of having a new baby – sleep deprivation being the hardest to tolerate – we had numerous, constant doctors’ visits and an emergency hospital stay. When we were lucky enough to be at home, I feared that anything – too much crying or excitement – could be harmful to McKenna.

I wish I could say I endured these struggles with grace. Truth is, I spent so much time and energy trying to do everything I could to keep McKenna well and to not neglect Victoria in all the chaos, I spent what little time I had remaining praying, crying or cursing, depending on the circumstances.

I’ve had some pretty dark times in my life, but none as dark and complex as this. On one hand, I had a beautiful, new baby girl and relished watching her thrive. Yet on the other, I spent every moment in conflict, afraid I would lose her and unsure how I would go on if I did.

Those who know me well, know that above all things, I treasure feeling secure. In retrospect, I realize the intense conflict and despair I felt during those dark times were the beginnings of my coming full circle and learning to accept what felt like a hard, bitter truth: anything can happen to any one of us at any time. We really only imagine we have any security at all. Though accepting this truth blows a hole in the adage, “ignorance is bliss,” it truly gives new meaning to understanding the light at the end of the tunnel, and making a conscious choice every day to live in it.

And so now, just after the 18-month-mark, as I find myself sitting here, writing about it all, I know for sure I am a changed woman. In some ways, I’ve changed for the better: I usually take pleasure in activities that used to feel like drudgery: driving home, tackling tough homework assignments with Victoria, cooking. I know my worst day at work is better than the best day when my baby was in the hospital.

In others, I’ve changed for the worse: My temper is horrible. It has been all along, but I’ve lost the ability to control it when I most need to. I also probably border on obsessive-compulsive disorder when it comes to worrying about germs. I think about having enough Lysol® wipes and hand sanitizer in the house more than I think about having enough food. Sad, but true.

McKenna is thriving. She loves to eat and weighs a healthy 22 lbs. She takes medicine three times a day and we go to Shands for check-ups once every few months. Victoria is an awesome big sister. We know McKenna needs one more surgery, the Fontan, but we’ve had a lot longer to prepare for it than we did the first one and we are not doing so under duress. Shevie and I have both been fortunate enough to keep our jobs and have excellent insurance. I think very often about parents we met at Shands who were losing their jobs or being evicted from their homes while they sat by their child’s bedside. When I think of them, I know our trials are hardly the worst or most heartbreaking.

My mind often wanders back to the days, the years, before McKenna was conceived or even thought of. The days when I was just a volunteer, asking myself how the parents in Broken Hearts of the Big Bend managed to be so brave when their children’s hearts weren’t anatomically perfect. Now that I’m one of them, I can answer the question.

My answer is…I don’t know. In the thick of it, it didn’t feel like bravery, it only felt like doing what I had to do to save my daughter’s life. If it happened to you, you also would have done the only things you could: prayed to God, trusted your doctors and loved your baby.

Here’s what I know: In the end, it all has been worth it, and my new normal is pretty sweet. McKenna is beginning to use words now and I’m sure, if she knew how, she’d tell you the same.

Child with Health Condition Changes Life's Perspective

By Laura Pearson


During a routine ultrasound during my 25th week of pregnancy, my obstetrician was concerned when he was able to detect only my heartbeat. Another ultrasound showed my son’s heart was beating only 48 beats per minute. The average heart rate of an unborn baby is between 120 and 160 bpm. Immediately, I was sent to Shands Hospital at the University of Florida in Gainesville, Florida, where I saw an obstetrician who specializes in high-risk pregnancies.


Doctors determined I had Sjogren’s Syndrome, an autoimmune disease similar to lupus, and my unborn son, Cody, had complete heart block. After that, I received weekly shots of the steroid, betamethasone, to mature his lungs for an early delivery. Eight weeks before my due date, Cody developed congestive heart failure and I had an emergency Caesarean section at Shands.

Cody’s been a fighter from the start and only had to stay in the hospital for 16 days. We were sent home with instructions about how to watch for signs of congestive heart failure. That occurred within his first year and he had a pacemaker implanted when he was 10 months old. Cody is 15 now and has had four pacemakers. He is doing great. Now that he’s 15, he’s anxious to start driving. Although he’s not allowed to play major contact sports, he has played Little League baseball, soccer, and basketball. He loves video games and hanging out with friends.

In the beginning, I asked “why” almost every day. Eventually, I answered that question with “So I can help others so they don’t feel as alone as I have.” Guilt played a nasty trick on me that first year. After I kicked it to the curb, I set boundaries for both of us.


First, Cody would grow up believing he was no different from any other child. That may sound easy, but in reality, it’s extremely hard. They want you to feel sorry for them and it’s so easy to do so when you look at that angelic face and think how unfair life is.


So, to make it work, however, you have to resist the urge. Cuddle them for the regular scrapes, boo-boos and disappointments, but stiffen your spine when they put a hand over their heart and say things like, “My pacemaker hurts.”


No, don’t ignore your child when this happens (far from it). But instead of freaking out or melting into a pool of fear, respond to them the way “typical” moms do with children who complain about a stomach ache. After you’ve determined there’s no reason to call Lifeflight, then, if you feel like, you may go to your room and cry.


Having a child with a congenital heart condition has a way of changing your whole perspective on life. I wonder sometimes who I would be today if Cody had been born healthy. I’ll never know, but I do know that I’m a much stronger person of spirit, mind and body. It’s toughened me up, which is a good thing, and made me very aware of just how precious life is.