Every Patient's Advocate

Misdiagnosis, a Visit to the Lab and One Last Point

For those of you who have read my misdiagnosis story, you know that one of the ultimate heroes was the pathologist (I’ll call him Dr. H.) who helped me understand how the misdiagnosis happened.  Even though he was one of the doctors responsible for getting it wrong, in the end, he didn’t turn away or try to avoid me.  Instead, he explained to me how the mistake was made.  He even apologized.  There was some relief in that, even though it didn’t change the outcome.

Fast forward four years.  Last week I was invited to visit Dr. H’s lab, the lab where my specimen was mis-read, the one where my misdiagnosis really took root.  It’s a hematopathology lab, meaning specimens like lymphomas, tumors, abnormal growths.  What Dr. H wanted me to know was that procedures and policies have been changed.  In his words, had I not brought the inherent problem-causing procedures to their attention, had I not held their toes to the fire, they’d still be doing things the old way.

And people might still be getting misdiagnosed.

For this woman who has fought on behalf of patients for four years…. that was a melt-down point.  All good.  Dr. H. showed me how the processes have changed.  It’s a way of handling paperwork and the eventual reports that are issued.  It turns out my misdiagnosis was more about piecemeal reporting, and less about bad science.

The tour lasted about an hour.  I saw all kinds of specimens under microscopes, printed reports, color-laced spots on a computer monitor (all well protected so I saw no names — good privacy) — and when we were finished, and I did understand how the original mistake had happened, and what was being done for today’s patients to prevent it from happening again….  I asked only one thing.  This, from my follow up email to Dr. H – and I’m quoting:

I recognize that there will always be a certain number of mistakes that will happen in the reading / conclusions drawn from samples / specimens.  I’ll never forget your words to me those four years ago – that you were taught in medical school that there will be mistakes, but if you have to err on one side or the other, you would want to err on the side of getting someone treatment they didn’t need, as opposed to missing a diagnosis that would require treatment.  I understood it even then.  It makes sense.  And I agree that it’s probably best for the majority of patients.

But when I look at those 10,000+ numbers of specimens being reviewed each year, I have to think there is some of the human aspect being lost.  As you will remember, I did ask the one woman in the lab where we reviewed the lined up chromosome reports, about aligning the work you do with the people who are represented by all those samples.  I do understand the responses you both gave me about objectivity, but I still feel it’s important to make this emphasis:  I don’t think it takes away from objectivity to remind yourselves on occasion (as an entire group of lab professionals) that each report is followed by emotion of real human beings who are receiving answers about their lives.  Each one of those samples represent life, death, debilitation, illness – short term or long term.  If the three most important things in life are love, health and the finances needed to support them, then your results have an impact – positive or negative — on all three.  The reaction upon hearing whatever the news is – good, bad or still unknown — is always emotional in nature.  Total joy, crippling sadness and upset, worry, fear, whatever it is – it’s human.

I’m not suggesting you need to know individual names, faces and personalities to align with samples and test results.  I’m just suggesting that they be regarded for what they are – the determination of what the rest of someone’s life is going to be.  Making that connection would, hopefully, compel the people who are figuring out the answers, the people who work in your labs, want to get it right even more often than they do.  How well do they understand that they hold someone’s life in their hands when they arrive at their answers? Could such an emphasis improve the quality and success rates of your results? I realize not every specimen is a life or death situation.  I imagine some are as simple as strep throat or some other fairly ordinary malady.  Even still, to the person who may not be able to afford the medicine needed to get rid of that strep throat, even that could be a big deal.

There was more, of course…. but that’s the gist.

Bottom line — I am highly appreciative of this opportunity to visit Dr. H’s lab, to observe how their work is done, and most of all to be so gratified that the procedures have been changed and fewer people will be misdiagnosed.

It was a pivotal moment in my career and my life.

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