How Doctors DON’T Think: Groopman on the Today Show

My physician-guru, Dr. Jerome Groopman, was on the Today Show this morning to highlight some of the excellent points he made in his book, How Doctors Think. (My editorial opinion — it’s a must-read for anyone who is having trouble getting diagnosed correctly.)

But I’m beginning to swerve from my usual train of thought surrounding how most doctors think. Whereas I’ve always taken it to a next step to help patients help themselves — I’m taking a bit of a detour today.

Groopman’s background information about the way doctors arrive at diagnoses must be understood by patients:

1. Doctors make snap judgments about their patients. For example, a doctor will ascribe any symptom a woman over age 50 has to menopause. Or if a patient is diabetic, the doctor will assume any subsequent health problems are related to diabetes.
2. Doctors always go with their first impressions — and they form them within the first 18 seconds of seeing the patient — which also means they not only don’t listen to anything the patient says after those first 18 seconds, but also means that they try to fit any additional symptoms the patient might recognized into their first impression.
3. Doctors are not taught to think in med school. They are taught to answer quickly — which means — they don’t think outside the box, because that takes too long.

So the bottom line is that smart patients will bring doctors up short on all this by asking “what else can it be?” or questioning their doctors about symptoms that don’t seem to fit into a profile for their diagnoses.

And I absolutely agree with that bottom line — I’ve agreed with it many times before.

However — I’m also beginning to think a bit differently about this conundrum, too. Whereas I am all about the patient taking responsibility, and I think all patients should be actively participating in their diagnosing and treatment decisions — at what point do we just say, “Whoa!! Hold on!! That may be how doctors think — but they are thinking wrong!”

Groopman stated that 15 to 20% of all diagnoses are incorrect, and that half those patients are then harmed by that misdiagnosis.

Think about it this way: that means that, on average, if you have been to the doctor 10 times, then YOU WERE MISDIAGNOSED TWICE!

Patients themselves can’t make up for that deficit. In addition to patients taking responsibility for participation, I think we need to throw some of the onus back on doctors, too. We can’t simply accept that they don’t do their jobs correctly, we must begin making them responsible for getting it right.

So whereas I usually provide a bottom line to patients, today I’m going to do that for doctors:

• Doctors, stop interrupting us.
• Doctors, begin thinking outside stereotypes and profiles.
• Doctors, stop trying to fit our symptoms into your own little boxes and start building the right boxes to fit them into.

(OK — I can’t help myself here…..)

And patients — start making doctors do all of the above!

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One Woman, 6 Missed Diagnoses, A Lesson for Us All

You know I’m a fan of Jerome Groopman, the author of How Doctors Think.

In his incredibly eye-opening book, he tells of trying to get a correct diagnosis for his own health problem, and the fact that four doctors had four different diagnoses for him, and four differing ideas of how to treat it. As an oncologist himself, he was appalled. It spurred him on to consider the questions of how and why doctors diagnose and treat medical problems and disease.

I was reminded of Dr. Groopman when I read Carla McClain’s story in the (Tucson) Arizona Daily Star about a woman, Norma Greer, who just KNEW something was wrong with her despite the fact the SIX doctors told her she was OK. Eventually, armed with one-hour’s worth of research from the internet, Norma found a doctor out of town who diagnosed her Inflammatory Breast Cancer. She’s transitioning through treatment for it now, but most certainly, six week’s worth of IBC missed diagnoses have shortened her life.

Norma’s lesson is a lesson for anyone who “knows” something is wrong with them. We have those little voices in our heads. We know when we’re being blown off by doctors who, for whatever reason, don’t take the time to look further than what pops into their heads. We need to trust our intuition and take action.

If we don’t take responsibility ourselves, no one else — not even the professionals we’ve hired — is going to do it for us.

Sadly, we suffered through this with my mother-in-law a year ago. She was miserable with what her doctor (and those of us who don’t know medicine) thought were stomach, gastro-related problems. In fact, she died of ovarian cancer this past July — which had been at the root of her stomach upset and was too advanced to treat by the time it was finally figured out.

My own misdiagnosis was just the opposite — still a lesson, but not in the same way.

Norma — thank you so much for sharing your story with others. You are a fixer in one of the best ways.

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Breast Cancer Misdiagnosis on Today Show: Learnings

My heart goes out Darrie Eason, the woman who appeared on this morning’s Today Show who was diagnosed with breast cancer, had a double mastectomy, and learned later that they had made a mistake — in fact, she had no cancer at all.

In her case, her biopsy specimen was mixed up with another woman’s — and that woman was told she did not have cancer. Of course, for the woman who does have breast cancer, she has now had a delayed diagnosis, too.

I’ve walked in Darrie’s shoes. I’ve faced a horrible horrible cancer diagnosis, and I’ve faced all those demons about treatment choices and prognoses. Then I learned they were wrong — I didn’t have cancer. I wouldn’t wish that horror on my worst enemy.

I applaud the young woman and her attorney. Instead of filing (what Dr. Nancy Snyderman called) a “blanket of lawsuits,” they have gone back through the process to isolate the lab that made the error, CBL Path(ology) Laboratories. They have sued the lab, and have demanded a review of their processes.

CBL Path says one of their technicians took a shortcut that created the error, and that no systemic problems exist at their lab. Dr. Snyderman explained that the error that took place was a result of “batching” — meaning — instead of reviewing one biopsy specimen for one patient at a time, the tech was processing a number of specimens from a number of patients at the same time. Thus, they got mixed up.

(Pardon my cynicism, but throwing one lab tech under the bus does not fix the problem, nor does it improve the results. In fact, a system problem MUST exist, or the short cut could not and would not have been taken to begin with.)

Have you been diagnosed with cancer? or any other disease that is diagnosed based on lab work? Before you make treatment decisions with your doctor, heed Dr. Snyderman’s excellent advice so you can make sure the same kind of mix up doesn’t happen to you.

The idea always goes back to getting a second opinion. In this case, you need to get a second opinion based on your lab work. But here’s the important part — the second opinion needs to be read from the slides developed from the biopsy and NOT from the paperwork!

Like this: lab #1 creates slides from the specimen, decides what the diagnosis is, and records it on paper.

To get an accurate second opinion, ask lab #2 to read the slides to proffer their second opinion, and not just review the paperwork from lab #1.

Would this have helped me? I’m not sure. I was told two labs had independently confirmed my diagnosis — but — I don’t know whether lab #2 read the slides, or read the paperwork from my biopsy. I didn’t even know to ask the question.

So that’s why I share all this with you…. I hope if you are in a situation where your diagnosis is based on lab work that you will be assertive enough to ask that the slides be reviewed a second time.

It’s something Darrie Eason and I share — the hope that what happened to us will never happen to you.

Thanks for the lesson, Darrie. And bless you for taking your message out to those who may face such difficulty in the future.

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CNN and Misdiagnosis: Part II

CNN’s Empowered Patient, Elizabeth Cohen, provided more tips this week about what to do if you think you’ve been misdiagnosed.

My own misdiagnosis speaks to four of her five points – and if you have just a seed of a doubt about whether your doctor has diagnosed you correctly, please take Elizabeth’s advice. Here are her points and my experiences:

1. Ask for more tests. The CNN article tells the story of Nancy Keelan whose diagnosis was missed five times until she finally asked for a test her doctor had not ordered. It turns out that after three years of missing the diagnosis, Nancy had endometrial and ovarian cancer.

In my case, two labs had “confirmed” that I had lymphoma based on a biopsy of a lump removed from my torso. Ensuing CT scans and blood tests showed no sign of the lymphoma, yet my doctor insisted I needed chemo. Only by studying my own test results, which were all written in med- and lab-speak which I didn’t understand (meaning I had to look them up), did I realize that another test result was missing. I asked for that test. It turned out to be the pivotal one — the one that proved I had no cancer. If necessary, I also could have asked for a PET scan which would also have revealed I had no cancer.

I need to point out here, too, that I firmly believe that the reason the doctor didn’t look into more tests is because he wanted me to undergo chemo. He is an oncologist. Oncologists make their big money from putting people into treatment. Oncologists are the only medical doctors who profit directly from selling drugs themselves. Read more here.

2. Ask : what else might my illness be? If you have a list of symptoms and you begin reciting them to the doctor, then before you ever get anywhere near the end of the list, the doctor has already figured out what he thinks you have. Never mind that it might be wrong!

From there, he tries to fit what you have into his ideas, not fit his ideas to what you have. It’s backwards.

There is a process doctors use called differential diagnosis. Doctors consider a list of possible diagnoses, then hone in on the right one based on evidence from your symptoms to medical tests. What you want to know is what other possibilities are on that list.

In my case I was diagnosed with a disease called Subcutaneous Panniculitis-like T Cell Lymphoma. The other very obvious possibility was panniculitis — and it turns out that’s what it was. Benign. Goes away on its own. Certainly a better alternative than lymphoma.

But my oncologist was trying to start with the lymphoma and fit my symptoms to it. He asked whether I had hot flashes or night sweats — which I did — which he therefore insisted were signs I had cancer. But hey! I was 52 years old and I’m female. Hello? Geesh.

3. Don’t assume no news is good news. This is so true! Patients tell me frequently that they have been given a medical test, and since they didn’t hear back from the doctor, they assume that means there is no problem. Guess what? Results get lost all the time. The specimen or biopsy may never even make it to the lab for review to begin with. They might never be delivered back to the doctor’s office. They might get lost in the mail or emailed to a spam folder. They might fall to the floor or get filed in the circular file by accident. They might get left in the copy machine, ferheavensake.

Even if they do come back, if they seem unusual, there’s a chance they are wrong anyway! That happened to me.

And, my original biopsy results never came to me until two weeks after the biopsy. I did nag the doctors — but somehow the biopsy had gotten lost in the shuffle because it was the 4th of July holiday. (And don’t even get me started on medicine and the holidays!)

4. Assume your doctors don’t talk to one another. This is way too true. They don’t talk to each other. Period. They don’t WANT to talk to each other. Further, they avoid talking to each other – because — there is no way they can get paid for talking to each other. I do think that Elizabeth’s suggestion that you get them on the same conference call is unrealistic. First of all, most of us don’t have access to the technology. Secondly, because there is no reimbursement code for them to get paid for that kind of conversation, you need to set up a scenario so they WILL talk to each other.

Better to set up an appointments with both at the same time, then show up at one of the offices, and while you are in the doctor’s office with doctor #1, have him place the phone call to doctor #2. After the conversation, get over to doctor #2′s office so he can make a reimbursement claim for you, too. That way they might take the time to talk to each other because they can both get paid for it.

In my case, despite several requests, my oncologists never spoke to each other. Those were the days when I was innocently trying to find my way. Had I known then what I know now? I would have been far more insistent, and an even bigger thorn in the “bad guys” side than I was.

After all — it’s my body and my life, and I’ve simply hired them for their services. If they don’t do it right? Well then — I will do what it takes to make sure it’s right.

And THAT is what I call Patientude.

Thanks for the reminders, CNN.

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Dr. Pausch on Life – and PTSD

(A Note: I’ve actually started this post a few times, but then I have to grab another tissue, wipe away my tears, and start again…. this is the face of post traumatic stress…. so bear with me, please….)

At least a dozen people have sent me links to what ABC called “A Lecture of a Lifetime.”

Some background: Dr. Randy Pausch, a computer science professor at Carnegie Mellon University, has been diagnosed with pancreatic cancer and has only a few months to live. He has proof of his disease in the images of the tumors in his pancreas. Of course, it was important for me to see those — because his prognosis is the same one I received — just a few months to live.

Diane Sawyer did a wonderful interview with Dr. Pausch on Good Morning America yesterday, which you can see here.

Or you can watch the entire lecture here. I am not able to do that. I just can’t. That’s the post traumatic stress.

The big difference, of course, is that I learned my diagnosis was wrong. I was told I had just a few months to live (life turns 180 degrees) and then figured out that I wasn’t go to die at all — at least not then (another 180 degrees, back to where I started.) Listening to Dr. Pausch just brings up all those old fears and feelings and — melt down time.

I hope you will take at least the 8-9 minutes to hear what Dr. Pausch has to say in the Sawyer interview. It is brilliantly simple, and simply brilliant.

In many ways, having had the same prognosis-related experience, I count myself as one of the lucky ones. NOT because I was misdiagnosed and learned I was really just fine, but because like Dr. Pausch, I was given the rare opportunity to examine my own life, assess what I did and didn’t like about it, and make the changes needed to be all I want to be.

YOU can make your own luck in this way. If you are one of those fortunate people who can learn from other’s experiences, then listen to Dr. Pausch, and follow his suggestions.

One of them is a long-time favorite of mine: Luck is the point at which preparation meets opportunity. Be prepared for the opportunities in your life. Keep an eye open for them. Take advantage of them. Substitute “someday” for today.

Remember — everything, EVERYTHING, happens for a reason. You are reading this post for a reason.

God bless you and your family, Randy Pausch. You have made a difference in this world you will leave behind.

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