Important update: before reading, please see correction 3/23/08 to Tuesday’s original post. The basic issue is unchanged but in any sensitive case like this accuracy is vital.

I received a comment on Tuesday’s post from a doctor in the Twin Cities, Dr. Bill Utz.

Dr. Utz’s message evoked so much thought and feeling that rather than replying in a further comment, I’m replying in a second post.

Dr. Utz, first, I wish this weren’t email-like faceless blogging, because I’d welcome a chance to talk as live individuals. If you’d like to do that, let me know how to contact you, at epatientdave at comcast.net. I want to be sure both my respect and my intensity come across. …

Second, my apologies for the delay in responding. My notifications of comments didn’t arrive.

Third, thank you sincerely for contributing to this discussion. As someone who had his kidney removed 12 months ago (Stage IV Grade 4 RCC), I take this whole episode very personally, and I want people to be looking at this and asking “What can we do that will make a difference?”

I understand the discipline of designing processes which, if followed, will absolutely prevent an error. At the same time, I have to ask you – what good does it do, now, to identify where culpability rests?

If it were me, it would do me no good to identify who did something wrong. To the contrary, as I faced my own diagnosis and approached treatment, my question was “What is everything I can possibly do to improve my odds?” I had a clear experience that I didn’t know what would make a difference, but that I was going to do everything in my power.

To put it differently: I was going to do everything in my power to take responsibility for influencing my outcome.

Don’t anyone, anywhere, anyhow dare try to discourage empowered patients from doing that!

But I don’t think that’s your intention – as you said, you support the basic premise.

As it happens, I did everything recommended in the subject hospital’s home page’s own “Get involved with your health care” Flash video.

I assert that it does absolutely no good to say “It shouldn’t have happened.” And in fact, if I can say this with respect, it seems to carry a certain unintended arrogance, or misplaced priorities, to imply that “we shouldn’t need” to be reading our own charts because the problem should never happen.

btw, one of us misread something – your comment mentions “having access to your records with the belief that the dictated report is, in fact accurate, will not completely eradicate the chance for a mistake.” The point is that we could have seen that they’re NOT accurate, had it said “left kidney” – especially since on the way out of my hospital, we could stop and get a copy of my scan images on CD.

Please understand, that falls squarely into “everything I can possibly do to improve my odds.”

Look … I just went onto PatientSite (isn’t that cool?) and looked up the report for my ultrasound 1/11/07, which says “The right kidney shows a solid mass at its lower pole, which appears to be somewhat bilobed and measures approximately 5.0 x 3.4 x 3.5 cm. … the most likely explanation is a renal cell carcinoma. Abdominal CT is recommended.”

A CT report that night said

A 2.1 x 1.0 cm nodule is seen within the right adrenal gland. Two large, heterogeneously enhancing, lobular masses are identified within the right kidney. The mass at the mid pole of the right kidney measures approximately 3.4 x 3.3 cm in axial dimensions (series 3, image 35). The mass at the lower pole of the right kidney measures 5.4 x 3.2 cm in axial dimensions (series 3, image 29), and demonstrates multiple small calcifications. Smaller 1.1-cm rounded hypodensity within the mid pole of the right kidney possibly represents a simple cyst, although it is too small to characterize by CT.

(Btw, there’s fun in them thar radiology reports, too. My family also got a hoot out of reading that my bowel was “grossly unremarkable.”)

Please, please look from the patient’s point of view. Apologies for not tracing down the original cite but it’s 1 a.m. and I have work in the morning… this Time article says “More than 1 in 3 doctors in a 2002 survey by the Harvard School of Public Health reported errors in their own or a family member’s medical care. … Not all the errors are due to ignorance or incompetence; even the best doctors can make mistakes.”

Unlike many people I know, I have no interest in berating “the system” nor ranting about “bad doctors.” That does nobody any good. My whole point is that we, the patients, ought to be aware of everything we can do to participate in our care, and ought to be supported in that by regulations requiring transparent access to our records.

In this particular instance, from what I’ve read, that one factor might have outwitted all the other breakdowns that happened. How can we say no to that? As I said at the beginning, the transformative question is, what can we do that will make a difference?

Thank you again for contributing. Do contact me if you’d like to talk live. This is too important to be left to impersonal bytes, or to appear to be a personality clash. It’s not.