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Archive for September, 2008

Doctors as Patients – Maybe This Should be Part of Med School?

From time to time I’ll read an article written by a doctor about his or her experience as a patient.  Several have written books about their experiences, and what they learned from them.

Often their own patient-hood causes some sort of epiphany.  That “aha!” moment that helps them GET IT.  Their work is no longer their job, or their career.  It becomes a total understanding of how their patients feel, how they are fearful, confused, frustrated and anxious. It creates empathy.

This came to mind today because I found two articles that address the subject.  The first was published in Healthy, edited by Amber Smith of the Syracuse Post Standard (the newspaper that carries my biweekly column) — called Doctors As Patients, it tells the stories of five doctors who had their own experiences as patients and all of whom feel much better prepared to do their work now.

The second was an article about Dr. Ron Davis, president of the AMA (American Medical Association) and his diagnosis of pancreatic cancer.  I’ve blogged about his article on my About.com site.

Regardless of their experiences, most doctors will still never “purely” understand the feelings of inadequacy each patient feels when it comes to understanding his or her medical problem.  No doctor can ever subtract his or her knowledge.  Further, when a doctor goes into treatment, there is still a professional courtesy that goes along with it.  Regardless of what form all that takes, the experience is still different.

But if I had my choice?  I’d most certainly choose a doctor who’s been in that very vulnerable position of having been a patient himself or herself.  That doctor will most definitely be more empathetic. It’s a perspective that will serve him or her well in practice, for sure.

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Have You Been Diagnosed with Cancer? Are You Sure the Diagnosis is Correct?

When I received my cancer diagnosis in 2004, and proved I didn’t really have cancer at all, it was the first time I had ever heard or known about that form of misdiagnosis.

It’s backwards from those we hear about more frequently.  Most of the time we hear about a “missed diagnosis” — meaning someone has a disease or condition and it is not diagnosed — and then does not get treated.  In the case of a cancer, of course, no treatment may mean the difference between life and death.

This summer we were able to prove that two other people, Heather and Daniel, had been diagnosed with cancers they did not have, almost identical to my own misdiagnosis.  In our cases, we were told we had something we didn’t.  Missed — yes — but backwards from the more usual case described above.

And it seems another person has suffered this fate as well — as written about in today’s Post-Tribune (from northwest Indiana — not far from Chicago) — a gentleman named Albert Velasquez Jr. was diagnosed in 2003 with lung cancer.  He did exactly what he was supposed to do — went for a second opinion — and the second lab also told him he had lung cancer….

Except that he didn’t have it.

As near as I can tell, he never received treatment for it either.  About three months passed between his first tests and the ultimate discovery of his misdiagnosis…. and if you substitute his name and type of cancer for mine, we could be telling the same story, except for two distinct points:

1.  That his misdiagnosis was a result of switching lab specimens. This happens WAY too frequently.  Lab techs are in a big hurry and swap one person’s samples and name with another.  I suppose they catch themselves when something like this happens (or if a woman is told she has prostate cancer?) — but studies tell us it happens daily.  About 1% of them lead to dangerous treatment mistakes, according to a pathologist at the University of Pittsburgh. But he also pointed out that “you wouldn’t want to have 1% of airplanes crashing.”

2.  Albert Velasquez has filed a lawsuit. I did not.

His suit is asking for damages to cover the extra costs needed from the misdiagnosis, and proof that the right person was eventually informed of his misdiagnosis.

So what can we patients do with this information?

I hope it will show you that when mistakes are made, it becomes incumbent upon us — the patients who pay for the mistakes — to figure out the real truth.  We need to trust our intuition, pull out all the stops, and keep following the evidence to prove — or disprove — our diagnosis.

Here are some tools:

  1. Learn about the concept of differential diagnosis — and keep asking questions.
  2. Make sure you get at least one second opinion (even a third, if necessary, just like Mr. Velasquez did).

If you have been diagnosed with cancer, then yes, there is a better chance you do have it than don’t.  But why on earth would you risk those horribly invasive treatments like chemotherapy or radiation if, for want of another test or opinion, you don’t have it?

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Wrong Site Surgery — What Happens Next?

I don’t usually write about local or state news because my work is really more broad than that — however — an article in my local newspaper about a local hospital and wrong-site surgery just begged for some additional information!

Wrong site surgery — a “never event” that takes place an estimated 100 – 200 times per year in the United States. In this case, the patient was supposed to have his fractured right hip replaced with a new one. However — the patient woke up in the recovery room with — surprise! — a new LEFT hip. Yes, the surgeon had replaced the wrong hip. And of course, the right hip was still in the same fractured state it began with.

I can only imagine that this mistake took place like most of the wrong-site surgical mistakes do. In a hurry (because, never forget – time equals cost), shortcuts were taken. And who pays the price? The patient, of course. Oh yes, the hospital will now pay a $ 6,000 fine, too — more about that in a moment.

According to the article and the New York State Health Department, this is what took place:

  • Instead of marking the skin on the correct hip with a skin marker, the surgeon used a ball-point pen.
  • + The surgical nurse didn’t know whether or not the skin had been marked, so he or she prepped the wrong hip.
  • + The nurse who transported the patient to the operating room never verified the correct side either.
  • + The “time out” process, which is required by the Joint Commission (the group that accredits hospitals) was not followed. (Of course not — time OUT is expensive!) There are actually three required Time Outs: 1 – before anesthesia, 2 – before any cuts are made, and 3 – post surgery, they are expected to account for all the tools and materials used that should not be left behind in the patient.
  • + The MRI films were not displayed in the OR for review prior to the surgery.

= one patient who is far worse off than when he or she was admitted to the hospital for surgery.

There’s no mention of what happens to the medical personnel who made the errors. One can only hope they are being dealt with. (And I won’t even go into the hospital policies that caused them to take short cuts to begin with. Were they running behind? Were they pressured to make up time? No excuses — but I do recognize that the pressures on these folks are outrageous, and then, as usual, we patients pay the price….) But I digress…

The hospital was fined $6000. I wondered — who gets that fine money? Where does it go? Hospitals all over New York State (and every other state, too) get fined on a regular basis. Does the money simply enhance the general budget? (Are we going to try to make up for Wall Street’s woes by fining healthcare facilities?)

So I called the New York State Health Department. After several minutes of being passed around from one department to another — I actually found someone who was very helpful! Peter Farr, from the Bureau of Hospitals, explained that until recently all that money simply got deposited into the general fund. BUT! Recent new legislation has established the Patient Safety Center, and now most of the fine money will be funding that program. The Patient Safety Center will be tasked with transparency issues — reporting all that data that we patients have not had access to, but will begin seeing (and hopefully using) in the near future.

You know, though, we patients can all learn from this wrong site surgery story:

  • If you will have surgery, mark the area of your body that is to be operated on. Use a marker that won’t wash or rub off right away (like a sharpie), and mark “THIS HIP” or “CUT HERE!” or whatever works for the surgery you’re about to have.
  • Then mark the area that could be mistakenly opened. “WRONG HIP” or “NO! NOT HERE!” on parts that could be cut accidentally.
  • Before they give you that pre-sleep drug, and anytime you see or encounter anyone who might be in the OR, remind them to take their “Time Outs.” Don’t worry about whether someone will be in the OR or not — assume they all will, and remind them all. Ask your loved one or advocate who is with you before your surgery to do the same.

I have to think that the surgical personnel at this hospital are just as appalled as anyone else about this mistake. They will be second-guessing themselves for a very long time, and I’m sure they will be correcting themselves and being far more careful in the future.

So my advice is simply for the rest of us to learn from their errors — and perhaps to think some good thoughts for that poor patient who had two hips replaced in one day, and will hopefully recover 100 percent.

(PS — If you are the patient, why not get in touch? We’ll keep your identity anonymous, but we’d love to hear your impressions…. email blog (at) epadvocate.com. )

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Daniel Was Misdiagnosed with SPTCL, Too

It’s been awhile since I’ve posted.  In that time I’ve been the Gramma-sitter for my two little grandsons while their new baby sister arrived (welcome Kyla Shay!), buried my ex-husband’s cremains (he died last April), spoken to two groups of patients, recorded two radio shows and finished my book proposal.

Enough excuses, you say!

But neither of these efforts, nor the emotions associated, can come close to the roller coaster Daniel’s family has ridden in the past nine months.  Even those emotions pale in comparison to the relief they felt during the past week as they learned that, just like Heather’s story earlier this summer, and my story, too, Daniel doesn’t have SPTCL either.

Learn more about their discovery and the report from the NIH.

So.  A h*ll of a track record in 3-1/2 months, wouldn’t you say?  Three reports of subcutaneous panniculitis like t-cell lymphoma (SPTCL).  Two of them aren’t even cancer.

I wish you could hear the song in my heart, and see my smile and tears of joy!  If not one single other patient ever benefits from my work, then I will always know these two people – Heather, then Daniel — have been spared chemotherapy.

Pressing on. And OH so happy!!

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