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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Posted in: Doctor Communication, Health /Medical Consumerism, Healthcare Quality, Media, Patient Advocacy, Patient Empowerment, Patient Safety, Patient Tools, Self Help

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Docs: It’s OK to Say You Don’t Know

I’m spending a few days visiting my parents in Florida and brought along Dr. Jerome Groopman’s book, How Doctors Think.

This is my second reading of this incredibly eye opening and wonderfully useful book. I’m a major fan.

This time I’m actually highlighting and post-it noting and starring and turning down page corners. It will probably take me forever to get through it. To give you an impression of how much important material I’m finding, I’m already on my third color of post-it tabs. And I’ve taken seven pages of notes.

On occasion I’m going to bring you some of Dr. Groopman’s gems. So here is the first one:

In the book, Dr. Groopman tells the story of problems with his hand and getting a diagnosis. He had to visit four doctors before he had a diagnosis that made sense to him. When you remember that he is a physician (a hematologist) then having to see so many doctors for a diagnosis that made sense is remarkable.

Without giving away all the reasons why (because that would be like giving you the good stuff from the book!) I will share his reaction at one of the doctors who wanted to surgically explore the structure of Dr. Groopman’s hand. When Dr. G asked what that doctor thought was the problem, the doctor replied that he wasn’t sure.

And Dr. G stated he was oddly reassured that the doctor would admit he didn’t know. Why? Because he had already been to one doctor who made up a name for a diagnosis that didn’t really exist.

Can you imagine that? A doctor making up a name for a diagnosis that didn’t really exist? Further, can you imagine the gall of a doctor who would make up a false diagnosis for another doctor’s condition? Yikes.

But it brings to mind many emails I’ve received from people asking me to help them find information about diagnoses so they can read more about them. There have been a handful of times they have given me a name I couldn’t find either. I’ve asked them to double check spellings or to ask the doctor to write the name for them. Sometimes all we could do was isolate the body system because most of the time those names are a body part paired with some exotic-sounding adjective.

Maybe those doctors were making up diagnosis labels too?

It’s human nature to want a label, and it’s human nature to want to know all the answers. I believe some doctors make up names to satisfy both those needs — they want to give an answer to someone who craves a label. They want to be heroes, and they don’t want their patients to think they don’t know. As patients, we believe that once we have the label, we’ll have the cure.

However, I can’t think for one minute that any of that is helpful? How can it be helpful for a doctor to make up something fictitious? And how does a made-up label improve someone’s health?

And what are the possibilities that in concocting a label, a diagnosis will be missed?

So here are two pieces of advice I’ve developed from How Doctors Think.

For doctors: when you help us, THEN you will be our heroes. Making something up just to have a name doesn’t help you treat us, nor does it help us heal. Please be straight with us. If a diagnosis eludes you, tell us you don’t know, but you’ll work with us to figure it out. That way we can partner to find the right answers.

For patients: if you suspect your doctor isn’t talking bona fide medicine, call him on it! If you are frustrated by the inability to find a diagnosis, don’t grasp at a label just to have a name. Work toward honing in on the correct body system, then the correct body part if you can, then descriptions of what is causing problems with that body part or system. There are so many reasons why you may not be able to get just one name for your medical problems. Don’t complicate the determination by insisting on a label that’s not accurate.

P.S. A note to Dr. Groopman: when I write to you to ask you for your autograph, I’ll buy a new copy to send 🙂

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Second Opinions That Don’t Count – or Do

I heard from a friend (I’ll call her Nancy) this morning about symptoms she’s been battling for a few months and was unwilling to share with anyone before now. It seems she has been back and forth with several doctors, has two sets of symptoms that could — or might not — be related. And the bottom line is that both problems will either continue or be recurring. In other words, she’s needing some time now to get on her feet and deal with her new reality.

Her email reminded me of some words of advice from many moons ago — all of which bear repeating. So here you go:

From Nancy, “What I learned is that bad/mediocre doctors are associated with other bad/mediocre doctors who they refer patients to see and good/great doctors are associated with other good/great doctors. It took me time to find the right “group” of doctors that I knew where well informed and were giving me the right answers.”

And my reply, “NEVER ask a doctor to refer you for a second opinion. They have little reason to provide a good referral and every reason for the referral to be unsuccessful. They don’t want to lose you as a patient, so they’ll never send you a competitor who possibly knows more or better than they do. And they are buddies with the people they do refer you to — and a buddy will never contradict a buddy. Those are human attributes, not limited to doctors, for sure.

(Would you ask your auto mechanic to refer you to another auto mechanic? Of course not! He would never send you to his competition because he doesn’t want to lose you as a customer!)

The best referrals are those from other patients who have already been successfully treated. They aren’t easy to find — but you can go to any of the online support groups for your diagnosis and at least chat with others who have your diagnosis and perhaps get good referrals. Support groups are listed here:


From Nancy, “After second opinions, I finally found an excellent surgeon and he gave me the final word, I did not need any surgery. I had two doctors tell me they thought I would have to have brain surgery and I was preparing to go to either Philadelphia, Boston or Baltimore for second opinions. So it was a long process but I feel very comfortable with the final diagnosis.”

And my reply, “Once you have a second (or third) opinion that differs from the first one, you still need to assess who is right. Just because you like one opinion more than the other doesn’t mean it’s the right one. Just because they recommend an easier treatment, or a less invasive treatment doesn’t mean it’s the right one. And the second opinion isn’t always better than the first — if it was, why would we even seek a first one? 😉

If you receive differing opinions, then you need to get yet another opinion from someone completely disconnected from the first ones (like in another city) – taking your medical records but NOT a diagnosis with you. It’s up to them to objectively arrive at a diagnosis based on the evidence collected.

One very hopeful sign from your email — you went to a surgeon who told you that you don’t need surgery…. Which is probably correct because a surgeon only makes money when he cuts — so if one tells you that you don’t need surgery, then he must sincerely think you don’t need it.

And then, of course, there is always the possibility of a misdiagnosis — been there, done that. Started a career.”

Sharp patients understand that objectivity is extremely important when it comes to second and more opinions. Doctors are human, and doctors run businesses. When they send you for a second opinion to a friend or partner, it’s because they want the second opinion to agree with theirs — not contradict it. But as patients we want the real story. It’s not about WHO is right or wrong. It’s about WHAT is the right answer, and the best way to take care of it.

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Soldiers’ War Injuries = Pre-existing?

This story from NPR caught my eye this morning. Even those who think I go a bit off the deep end when it comes to casting dispersions on insurance and other payor programs that should be paying for our healthcare and don’t… this will make you think twice.

The story concerns American soldiers who have fought in Iraq and have been injured, in this case, by bombs or rockets. They return to the States with long term effects from those injuries ranging from headaches to bleeding ears to insomnia, symptoms which never existed before they left and clearly result from their war injuries. Heck, some of them have been awarded purple hearts for those injuries.

If I understand the story correctly, if the soldiers are diagnosed with post-traumatic stress (PTSD) then the VA will continue to care for them. This is important because most of them don’t stay in the service past their original enlistment, so the PTSD diagnosis establishes that they have suffered from the effects of war. That ensures their care once they leave the service for the injuries suffered during service to our country.

That’s fair. And that’s the point being made by the injured veterans who testified before the US Congress yesterday. But, according to Paul Towns, who runs an organization called Veterans for Common Sense, there may be tens of thousands of soldiers who aren’t receiving that fair care they deserve.

Unfortunately, those tens of thousands are being denied care because, instead of being diagnosed with PTSD, the VA “discovers” that they had a “pre-existing personality disorder” after they return. Never mind that these soldiers passed all their physical and mental tests and exams before they entered the service. Never mind that they didn’t get blinding headaches, bleeding ears or suffer from insomnia before they went to Iraq.

Are you kidding me?

This seems like a travesty to me. That these soldiers fought on our behalf, to help America retain its freedom… and we would deny these men and women who stood on the front lines the healthcare they deserve?

And this is the government doing the denying – not a private health insurance company. That means it is our tax dollars that would need to be spent to take care of these soldiers. I, for one, think that it is a small price to pay to take care of these soldiers who have put their lives on the line to protect me.

Even aside from dishonoring these men and women in this way — for the government to be so underhanded, for the government to strip the possibility of care from these soldiers, establishes a precedent for other payor entities to do the same. Afterall, if a private insuror did the same thing and was sued, all their lawyers would have to do is point out that the US government denied care first!

It’s wrong. I’ll be interested to see what the outcomes of the congressional hearings are. If you have the opportunity to contact your congressional representatives, please do:

Contact information for US Congress Members

Covering the healthcare costs for injured American soldiers is only fair.

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Posted in: Health /Medical Consumerism, Health Insurance, Healthcare Quality, Hospitals, Patient Advocacy, Patient Empowerment, Patient Safety, Patient Tools, Politics and Medicine

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Lymphoma Patients’ “Secret” Option

Before you read this blog post, I’ll beg you to be patient with me. Having been diagnosed with lymphoma myself, and reading the article I’m about to cite, my disgust and anger can’t be bridled…

If you have been diagnosed with non-Hodgkin’s lymphoma, there may be a cure for you that your oncologist hasn’t even mentioned to you. Yes, I said a CURE. Not just a treatment. A cure.And the reason you don’t know about it is because your oncologist won’t make any money from it. Since he can’t profit, you won’t be cured. Seriously.

Here’s the article I’m referring to, and when you read it, you’ll see why it angers me so. It’s from the New York Times.

It regards numerous patients, all late-stage non-Hodgkin’s lymphoma patients, all of whom had already suffered through chemo, and were then given a shot of either Bexxar or Zevalin, and never needed treatment again.

Both drugs are FDA approved. Both are readily available. So why don’t oncologists give them to their patients? Because they don’t get paid to do so. The only place a patient can get a shot of either drug is through an academic medical center, and not at a private oncology practice.

I’ve blogged previously about oncologists and profits from their drugs. To remind you, oncology is the only specialty I know of that directly profits from the sale of drugs.

Ding! Ding! Ding!! Can you spell c-o-n-f-l-i-c-t-o-f-i-n-t-e-r-e-s-t?

My jaws are clenched because…. My own misdiagnosis revealed the truth. At the end of my debacle, I accused my oncologist of insisting I begin chemo (for a cancer I didn’t really have) because it was the only way he could profit from me. He never even responded.

And from the article, I quote:

“One reason is that cancer doctors, or oncologists, have financial incentives to use drugs other than Bexxar and Zevalin, which they are not paid to administer. In addition, using either drug usually requires oncologists to coordinate treatment with academic hospitals, whom the doctors may view as competitors.”

Then, quoting Dr. Oliver W. Press, a professor at the University of Washington and chairman of the scientific advisory board of the Lymphoma Research Foundation, “Oncologists use everything in their cupboard before they refer,” Dr. Press said. “At least half the patients who get referred to me have had at least 10 courses of treatment.”

So let me review to this to be clear:

If you are a non-Hodgkins lymphoma patient (or a caregiver or advocate for one) then get in touch with the oncology department of your closest academic medical center. That will be a university or medical center or hospital that is aligned with a medical university. Here is a list. Request to be seen by an oncologist on its staff, and take copies of all records regarding your diagnosis and treatment. As you discuss options they can provide to you, ask them specifically about Bexxar and Zevalin and whether or not either drug can help you.

Then let me know if you make progress, please!! I’d love nothing more than to know this blog helped you…. because even though my diagnosis of non-Hodgkin’s lymphoma turned out to be wrong, I still feel such a comraderie with other lymphoma patients…. and while news like this angers me, it also provides me with hope that YOU will find relief.

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Posted in: Doctor Communication, Health /Medical Consumerism, Healthcare Quality, Hospitals, Medical and Research Studies, Patient Advocacy, Patient Empowerment, Patient Safety, Patient Tools, Pharmaceutical Drugs, Self Help

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