Archive for the 'TV' Category

A Lemon Law for Medical Consumers?

From Hannah Montana to drive-by shootings, there is plenty of interesting news in Cincinnati, Ohio today.  But to me, your friendly patient advocate, an even more fascinating topic was reported in Cincinnati’s news this week:  the possibility of a lemon law for medical consumers.

To me, it’s one of those “now why didn’t I think of that?” ideas!

A woman named Betsey Exline gets the credit here.  Last spring she went for a routine colonoscopy, which was botched, and she ended up with emergency surgery and a stay in the hospital for eight days. 

Nine doctors, the emergency surgeons and the hospital then billed her for the insult.  Can you say “unmitigated gall?”

Should she sue?  She could, although lawsuit cost estimates range into five figures and she’s not getting any younger.

Instead, this very wise woman took a very different approach.  Bless her heart, she’s not looking to make money from this error which she will suffer from for the rest of her life.  She just wants someone to pay her bills.  She just wants someone to recognize that it should not be her responsibility, or her insurance company’s responsibility, to pay for the errors caused by others.

Hello?  Duh!  That just makes so much sense!

So Betsey contacted her local Ohio state representative and is now pursuing the introduction of legislation that would, in effect, force those who caused the errors to pay for the errors — but not through the courts.  Instead the legislation will create a consumer protection process for medical errors. Those who caused the errors will be required to cover the costs that result from their errors.

And if it becomes law?  The doctors win because it will cut down on lawsuits.  The insurance companies win because it will cut down on lawsuits, too.  And the patients win — at least to the extent they won’t have to pay those unfair bills.

(And who will stand in the way?  Of course, those lawyers who handle medical error victim lawsuits.  but that’s another blog post for another day.)

Wish I was in Cincinnati, Betsey.  I’d find you — just to shake your hand.  You’re a fixer of the first order.

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Cancer and Bravery: Those Strong TV Women

I remember hearing in 1976 about Betty Rollin, a TV reporter who had written a book about her experience with breast cancer called, First, You Cry.

I was in my 20s, and a new mom. In fact, my daughter Becca turns 31 today and I remember watching book-tour type interviews with Ms. Rollin as I rocked Becca to sleep. (Happy Birthday, Becca!)

Then 8-10 or so years ago we heard about Katie Couric’s husband — dead at 40 something of colon cancer. So what does Katie do? She has a colonoscopy with TV cameras rolling so others will see that it’s not so bad — but it certainly does so much good.

Fast forward all these years — and news in the past few months about both Robin Roberts, ABC’s Good Morning America host, and now Hoda Kotbe from NBC — breast cancer, and sharing their stories to help other women.

How powerful! These four brave, strong women, sharing their experiences so others can learn, and eventually, be saved from the horrors that later stages of cancer can bring.  They share the medical, the emotional and everything in between.   And there are others, people in the limelight who use their own experiences to help others.

I feel a bit of a kinship. My disease may not have turned out to be cancer, but my reaction has been the same. To share, in hopes that others won’t suffer.

The strength of women astounds me sometimes. It’s patientude for sure. I’m proud to be counted among the strong ones.

And my very best thoughts and wishes go out to Robin, Hoda, and all you women who are out there, today, using your incredible strength to carry you through the emotions and treatment, while you hold the hands of others who must follow in your footsteps.

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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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Oprah Takes on Health Insurance

Oprah took on healthcare, insurance and the lack thereof today. While I think she did an astounding job of moving the discussion forward, I think a major point was missed — and needs to be pointed out.

Joining Oprah were Michael Moore, the director and producer of Sicko, Karen Ignagni who is the top lobbyist for the association of health care insurers, and Uwe Reinhardt, a health economist. The debate was heated, hit many of the important points, and during the hour, Oprah asked several times, “What do we believe?”

Believe? Here’s how it was posed: “Do we believe the child of a gas station attendant and the child of a CEO deserve the same access to healthcare?”

How many answers can there be? Of COURSE that child should have the same access!

.. but guess what… they don’t.

This is not new to anyone. And then, of course, the question about the 47 million Americans who don’t have health insurance is imposed…. but then — Joe Average American retreats to this thought process, “well, at least I’m insured and my family is insured, and I’m only one person anyway, and there’s nothing I can do about it, because I am only one person.”

Here’s the point that was missing — The great majority of Americans think like Joe Average American — and that thinking is flawed! Joe Average American — you have missed the point! Joe — you have coverage that isn’t going to cover what you think it is! You have coverage that will pay far less than you think it will, despite the fact that it has already cost you hundreds if not a thousand dollars a month just to have that coverage to begin with!

Yes — Lisa Ling showed the stories of three people who had insurance, yet were denied care. Those are huge, and sad, stories.

But that’s not what I’m talking about. I’m talking about those people who need help with normal, every day care. Their child breaks a leg? It costs them hundreds or thousands of dollars in addition to their insurance coverage. Find out you’ve got allergies? It will be declared a pre-existing condition and it won’t be covered. You’ve got GERD? Even though your health is covered, you prescriptions may not be — it will cost you an additional $300 or $400 per year for the drug you need.

Michael Moore and Oprah reiterated a number of times that they don’t understand why anyone should profit from healthcare. And I do differ with them on that, at least to a degree. I think that profitability is a great motivator for innovation, and it’s profit that drives good research, new discoveries and treatments, and eventually, advanced care.

But I don’t believe that’s true for insurance. Profitability should not be allowed when it comes to human lives.

For those who have insurance and who think they have decent insurance (even though they are usually wrong) …. be advised that you are likely clueless about how little coverage you really have. Be advised that your healthcare dollar won’t go nearly so far as you think it will. And be advised that the health insurance lobby owns too many legislators who will make sure that doesn’t change anytime soon.

I don’t know how Karen Ignagni sleeps at night. Honestly. I’ve seen spin doctors, but hers spins only a much more tangled web.

And those tangles are costing more lives every day.

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Find more commentary on Sicko here.

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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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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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Stossel, 20/20, Bait & Switch, Naivete

Did you watch John Stossel’s take on the future of health care on 20/20 Friday night? If you’re not sure what I’m talking about, you’ll want to link to ABC’s review of the show here.

If you watched it, and you’re curious about my opinions, here they are:

First — can you say “bait and switch?” I’m not sure why the promos for the show all focused on Michael Moore taking people to Cuba (which is all about universal healthcare), but the “fixes” Stossel offered on the show focused on just a portion of our American citizens who have health insurance already? Did I miss something?

OK — as for what WAS in the program:

One point Stossel made was that since we (and our employers) pay insurance companies, and insurance companies then pay doctors, then we patients do not tie the cost of services to the services themselves. He used a metaphor of “grocery insurance.” If we paid insurance companies for our groceries, then when we went to the supermarket, we’d just keep pulling groceries off the shelf and walking out with them, even if we didn’t need them, because we wouldn’t pay for them directly.

(Hmm…. let’s see….. I’ll take a shot of penicillin, an EKG, a few vicodin samples and a blood test, please…. ??)

Actually — I agree with him. Being a step away from actually paying cash for medical services does keep us in the dark, and it does have an effect. It brings to mind the man who told me may moons ago that his health care was free!

Stossel’s next point was that profit and competition make for better health care. Were it not for the possibility of making profits, we would not have the innovation in this country that results in drugs that cure us or improve our symptoms, or devices that do the same, etc.

I agree with that point (in part), too. I’ve said before — I’m a business owner, and have been a business owner for eight years. I “get” the capitalist basis for business, and I embrace it.

But I’m most definitely uncomfortable with Stossel’s conclusion — if that’s what it was. His conclusion seems to be that capitalism provides all the answers, and if we begin using Health Savings Accounts, so that we control our own health spending, then we’ll bring the healthcare system dysfunction under control.

A quick primer on HSAs: you and/or your employer put money into an account that you can draw from when you need healthcare. Your insurance premiums themselves are less, and the difference goes into the HSA. When you need to see the doctor for one of the “basics”, then you draw from the HSA instead of from insurance.

So, John — do you really think using HSAs can “fix” the American Healthcare system?

If he does, then it’s a horribly naive answer. Seriously. It doesn’t take into account any problems beyond the basics, and as we all know, it’s not the basics that are the problem to begin with. Sniffly nose? Maybe I go to the doctor and maybe I don’t. If I have to hand over cash? Then probably I won’t. So for that kind of scenario — yup — I agree. Being responsible for our own spending is a great idea.

But what happens when I find a lump? It doesn’t hurt — do I go to the doctor? I don’t have enough cash left in my HSA. Do I get it checked? Does the stress of worry make me even sicker? There are a million scenarios when an HSA just won’t work.

Or, like in my case. How does that fix the problem of a doctor who recommends a treatment simply so he can make more money? That’s capitalism at it’s best! “Trisha, you need chemo or you’ll be dead in six months.” Bull-pooky.

Further — what about those folks who don’t have insurance to begin with? There’s no employer supplying insurance, and there’s certainly no HSA. In Stossel’s scenario — there’s still no fix for the uninsured.

And what about the catastrophic problems we have? We still need insurance, right? So, does the cost of insurance continue to rise PLUS we need to have an HSA that may or may not have enough money in it when we need to see the doctor?

I still believe the answers lie in the middle. I think that a shift to the system that continues to embrace the good of the private, profitable sides of medical care, but still supplies the basics to those who need it, without a profit basis, is possible.

Social security and medicare both “work”. Granted, at the moment they are underfunded and we need to be more vigilant — but their foundations are fair and good. Neither one subtracts from the idea of separate retirement savings accounts, nor additional private insurance. We have public schools and we have private schools. We have public libraries and retail book stores. We have public parks and private country clubs. We have so many examples of where the public and private have combined to serve our needs — and I believe it can be done for healthcare, too.

One approach — read Dr. Rich Fogoros’ book. It works in theory — why can’t we give it a try?

There are no cut and dried, black and white answers. And there’s no room for naive stabs at an answer. They just fuel the fire and detract from real answer seeking.

So, John Stossel — the next time you want to do a healthcare story on TV? Forget the bait and switch. To suggest to your audience that you’re going to prove Michael Moore wrong about universal care, and then to present only one corner of the debate suggesting it’s an overall solution can only be detrimental.  If that’s the only part you understand, then you have a very long way to go.

I hope neither you nor your loved ones are ever faced with the realities of American healthcare dysfunction.  Believe me,  you’ll be singing a much different tune.  Either that, or you’ll sing it in a very different key.

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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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Robin Roberts and Self-Advocacy

Robin Roberts, Good Morning America’s host, now in treatment for breast cancer, practices what I preach. Wise woman.

No — I take no credit for her progress. In fact, I very much doubt she has ever heard of me or my work. But in so many ways we are of a single mind, and I hope that you can learn from her experience, too.

Robin recently discovered a lump in her breast, and sought a mammogram, which turned up nothing. But she just “knew” — her intuition kicked in — and she and her doctor then sought an ultrasound, then a biopsy — and yes — they diagnosed her cancer. Surgery followed, and no doubt there will be courses of treatment beyond. But they caught it, and early, and she’s on the road, God willing, to recovery.

Intuition — trust it, act on it, follow it to its conclusions.

And the “God willing” part is important. Her faith and spirituality are in part responsible for her success so far. Not that one needs to be religious to find one’s best medical outcomes; rather, that one needs to understand the bigger picture. When we have these kinds of frightening experiences, how can we turn them into inspiration for others? Robin is doing that — with her return to the GMA set this morning, she has become that inspiration. She is taking some of her strength from the outreach of others, too. Yes, she’s practicing what I have tried to do for three years now.

Spirituality – use it for your own strength, use it to help you accept the strength of others, translate it to inspiration for others.

Chutzpah is that wonderful Yiddish term for having nerve and audacity — which is what is required in today’s healthcare environment. Sticking up for oneself, not accepting information on face value, making sure we get the very best care possible because we actively seek it, and not because we expect it will happen. Robin isn’t afraid to go that extra mile — if she hadn’t had chutzpah, then she might not have kept after her doctor for additional tests.

Chutzpah – stick up for yourself! Command the respect you deserve.

Robin Roberts is a perfect example of a woman who took her circumstance, her intuition, her spirituality and her chutzpah — and used it to save her own life.

Like I did. Welcome to our very exclusive club, Robin!

And welcome back to your on-air life. I’m pleased to see you looking so healthy and beautiful, just like you always do.

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Follow Up Post:  11/16/07:  Cancer, Chemo and Emotions:  It’s OK not to be SO OK

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Doctors are Human, too

A report from the AP last week, and reported by the Washington Post, Fox News and others, describes a survey of more than 3,000 doctors in both the US and Canada about their reactions to their own mistakes.

The survey was developed and issued by the Joint Commission (JCAHO), the body that accredits hospitals and other health care facilities.  It asked doctors whether they had affected any near misses, minor medical errors, or serious medical errors which may have caused permanent or potentially life threatening harm.

92% admitted they had been involved in errors.  And those involved also reported that after they made the errors, they felt increased anxiety about the potential for future mistakes, less confidence in their abilities, they reported sleep problems and a loss of job satisfaction.

Yes, doctors are human, too.  No matter what kinds of egos some doctors may have, no matter that we put them on pedestals and expect them to be all-knowing, and regardless of their extensive educations — they are still human.

But the survey conclusions, and the news reports, fail to draw a few conclusions I think are important for sharp patients:

  • I appreciate the fact that these doctors were so candid.  Among the survey questions, the doctors were asked what kinds of help they were offered for dealing with their mistakes (counseling? further education?) and almost no help was offered.  Hospitals, in particular, don’t want doctors to admit or discuss problems because they feel like they are open to lawsuits.  I see both sides — but my sense tells me that helping these doctors deal with their mistakes in positive ways would perhaps prevent future problems. 
  • The number is huge — 92% !!  We all make mistakes, granted, but our mistakes don’t usually cause harm to other lives.  That’s 92 of every 100 doctors.  We know that translates to almost 100,000 deaths per year, too.  I don’t know how to do that math, but those numbers are huge. 
  • I can’t help but think some (not the majority, but some) of these doctors were affected less because they had caused harm to patients and more because they have huge egos.  You’ll remember my blog post last week about the word “ego-dystonic” — a doctor who thinks he is omnipotent could be traumatized by making a mistake because he doesn’t think it’s possible for him to make.  So their depression and sense of failure could be more self-indulgent than the reports or statistics might indicate.  Further — there is a good chance that many of those egos didn’t report any errors;  meaning, the other 8% who said they didn’t experience any errors are really just covering them up.

Medical mistakes are a lot like car accidents — everyone thinks they happen only to someone else.  But when we learn to drive, we are taught to drive defensively.  We are taught about how accidents happen, and we are taught the rules of the road.  

No one teaches us defensive patienting.  No one teaches us to watch out for the others on our patient road.  No one teaches us how to read the signs or signal our intentions.  We’re just expected to know these things.

So perhaps the biggest takeaway from this report is that we patients need to internalize is the sheer numbers of doctors who make mistakes.  And we patients need to practice defensive treatment seeking.

Because at least 92% of our doctors are making errors and we are the ones paying the price.

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