Posts Tagged 'Diagnosis'

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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All Patients Should be Pro-Choice

Now that I’ve captured your attention, a bit of a disclaimer. I’m not about to blog about Roe vs Wade — no way — not a chance.

Today’s thoughts revolve around patients and their choice of doctors. Or their choice of treatment options. Or their choice of whether they want to choose. Or their choice of making no choice at all, which is a choice.

Whether or not you are good at making choices, it is still your right, or even more so, your responsibility to choose how your decisions will be made, when it comes to determining your healthy future or your medical outcomes.

Patients seem to fall into two camps. Some patients don’t want to have to think for themselves; they just want others to tell them what to do. So they visit convenient doctors, who tell them, “This is what you’ve got. This is the best way to treat it. Go home and do as you’re told, and come back to see me in 10 days to make sure it worked.” And they do. Default.

Other patients — the sharp ones, the ones who are masters of their own universes (thanks Jerry Seinfeld) — understand the patient’s responsibility to choose for himself.

They begin by choosing the right providers based on information they find online, talking to other patients, or the doctor’s reputation (if they can figure it out.)

Then, when they visit the right provider, they engage with him. If the doctor says, “This is what you’ve got,” then the sharp patient says, “What else could it be?” Then he goes home, logs on, looks up all the possibilities, and either concurs with the doctor’s assessment, or begins asking more questions. Together they choose the right diagnosis.

If the doctor says, “This is the best way to treat it,” then the sharp patient asks, “What are the other treatment options? I want to know about them all.” Then the patient considers the pros and cons of each and makes his OWN decision*. Yes, it’s wise to strongly consider the doctor’s recommendations — the doctor is the one with the medical education. But patients should be actively engaged in making their own choice.

If the doctor says, “Go home and do as you’re told and come back to see me in 10 days to make sure it worked,” then the sharp patient says, “Yes, Doctor, I will comply with the treatment — because we worked together to determine the right choice for me.” Then the patient WILL comply — because he knows that’s his best opportunity for healing from whatever problem he has.

The truth is that patients makes choices everyday — some make those choices passively and some make them actively.

Passive choices include: letting someone else tell you what to do, or failure to make a choice at all (which means you have chosen not to make a choice), or agreeing to do what you’ve been prescribed — and then just not doing it. None of these options is a responsible approach.

Active choices include: learning about the various diagnoses that fit your symptoms, then working with your provider to determine which one applies to you, studying the various treatment options available and working with your provider to fit the one that will fit your needs the best, then complying with the treatment regimen, knowing you and your provider determined it together to make sure you achieve your best outcomes.

I’m suggesting that all patients need to actively make choices to find their best outcomes.

Which kind of patient are you? And which patients do you think end up healthier?

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*My next newspaper column, which gets emailed to my entire list, is focused on how to make those choices when they become difficult for you. If you’d like to get a copy of my column next Tuesday, Oct. 2, sign up here to receive it.

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Thanks to CNN for sharing my story

Three years ago tomorrow, I learned I wasn’t going to die — at least not before Christmas.

September 20, 2004 was the day I learned I didn’t have cancer afterall — despite 10 weeks of insistence on the part of a handful of doctors and two pathology labs that I had a strange and aggressive lymphoma and would die within months if I didn’t undergo chemo.

The significance of September 20 was that it was the day I received conclusive results from the National Institutes of Health — no cancer, no death sentence, we’ve-just-handed-you-back-your-life.

And in those three years, I’ve changed my life and my career to help others help themselves find their best medical outcomes. That’s why I’m Every Patient’s Advocate.

You can read my entire story here. Or, for the sake of time (because I’m soooo long winded in my version!), you can read Elizabeth Cohen’s and Jennifer Pifer’s version, published today in the Empowered Patient column on the CNN website.

I’ve been a fan of Ms. Cohen’s column since its inception just a few months ago. Why? Because it’s not just a column with a story. It’s a column that compels with a story, and follows with real tools. This column outlines some of the ways you can determine whether you’ve been misdiagnosed.

The Empowered Patient column is a great fit with my blamers and fixers concept. Ms. Cohen is a fixer, and because her audience is so widespread, many will find help among her words.

I’ve taken advantage of the link from CNN to my EveryPatientsAdvocate.com website to provide additional information about determining misdiagnosis. There will be a second Empowered Patient column next week that helps readers learn what steps to take to confirm a misdiagnosis.

If you’d like updates, or alerts to the second column, please sign up on my email notification list, and I’ll keep you in the loop.

Thanks Elizabeth and Jennifer. You can’t imagine how validating it is to see my work appear on such a grand platform.

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Doctors are Blamers or Fixers, too

A week ago, I posted about Blamers and Fixers.

Blamers are those people who have been hurt by our healthcare system in some way, and can’t get beyond the hurt. They are stuck in the anger, frustration and pain. It’s understandable, certainly, especially in cases where some permanent horror has come from it. From the loss of a loved one, to the loss of a body function or limb, it’s understandable, but not particularly helpful, that these folks are stuck in the blaming.

Fixers are about moving on. They, too, have suffered at the hands of the system, many of them in similarly devastating ways, but they have taken their anger, frustration and pain to create something positive for someone else. I listed the people I know who have done such. In some cases, they have lost their children to medical horrors, or they have suffered in some way that would just make your heart break. But they have taken that experience to a platform that creates a better situation for others. It’s cathartic and it’s useful.

I consider myself a Fixer.

Turns out that there are doctors who are Blamers and Fixers, too! I probably shouldn’t have been surprised by that, but I was. Just this week, two articles were shared with me that prove the point.

The first article comes from the Portsmouth Herald — actually published last March — about Dr. Terry Bennett, considered to be a “controversial and opinionated” gentleman titled, Doctor: Greed subverts health care. In the article he takes no prisoners, blasting doctors, facilities and HMOs in particular, then Medicare and Medicaid — in other words — just what you’ve heard me say many times before: American healthcare is not about health or care; it’s about sickness and money.

But the bottom line from the article is this: Dr. Bennett is just a Blamer. Period. He even states that he’s waiting for a “general consumer/voter uprising” to fix the system.

Um. Doctor Bennett…. just what are you doing to help? You are in a good position to be a Fixer. What are you waiting for?

Well — perhaps he is waiting for Dr. Rich Fogoros who has, in fact, analyzed how American healthcare has become so dysfunctional, and has offered his solution. And you know what? It makes a lot of sense!

Just a bit of a disclaimer here — I’ve read Dr. Rich’s book entitled, “Fixing American Healthcare — Wonkonians, Gekkonians, and the Grand Unification Theory of Healthcare“. Dr. Rich and I have corresponded on several occasions. I’ve even provided a testimonial for his book. And you can guess why — because he is a Fixer!

The article forwarded to me is a review of the book from Smart Money magazine. It describes Dr. Rich’s theory about the “covert rationing” of healthcare in America — the point that only some people get the care they need and describing the destruction of the doctor-patient relationship. He truly tells it like it is, as ugly as it is. It’s eye opening at the very least.

But the important part is this: Dr. Rich also offers his Grand Unification Theory which describes how to fix it. Yes FIX it. In a fair and acceptable way for all players. Just imagine that!

[If you are one who is interested in the big picture of the healthcare system, if you are curious about how all the disparate pieces of healthcare can come together in a positive way, then you'll want to read Dr. Rich's book. A hint: The letter U in his book has nothing to do with Universal and everything to do with Unification.]

Blamers and Fixers…. If a patient is a blamer, OK — it’s understandable. When you have been directly harmed by the system, and absolutely unable to do anything to help make it better, then I can certainly understand why you might be a blamer — at least for awhile. Been there. Done that. And even if you get past the blaming part and just move on, without becoming a fixer — well, I guess I understand that, too.

But I have real trouble digesting doctor-as-blamer and never moving to the fixer position. Just making a lot of noise. Stirring the pot. I don’t see how a doctor has helped one single patient by doing nothing but publicly complaining. Whine whine whine.

It’s like voting. It drives me nuts to hear people complain about this politician or that one, or this issue or that one — when the complainer doesn’t even get off his duff to vote. Whine whine whine.

So Dr. Bennett — please stop whining and step up to the plate. Read Dr. Rich Fogoros’ book. See what you think. Then step up to become a Fixer.

That’s my guantlet. I’m throwing it down.

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By the way: John Stossel is taking on the challenge of suggesting a fix to the system tonite on 20/20 on ABC-TV. I’ll blog about that in the next few days. [I'm looking for some creative ideas, John!]

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