I'll begin this blog with a question. Are patients getting too much medical information without proper context? At my own institution "My Chart" is the tool that patients use to access their medical records on-line. Surgical pathology reports are about to be added to their "My Chart" records, although after a 14-day delay to allow for any corrections, ancillary studies, etc. Are patients really equipped to understand a gross note or microscopic description, let alone a diagnosis? Who are they going to contact when they don't? I'm certainly not in favor of keeping patients in the dark, but if they're going to be given all this (often extraneous) information, who's going to sift it and interpret it for them? And make sure they understand?
The days of an uninformed populace served by a paternalistic medical system are fortunately long gone. Whenever I think about what it was like in those days, I remember a case that I encountered as a resident while rotating at a nearby private hospital. An elderly woman had undergone abdominal surgery for diverticular disease. At the time of surgery a several centimeter mesenteric mass was noted and removed. The specimen was clearly a low-grade neuroendocrine carcinoma involving a mesenteric lymph node but no primary tumor could be found anywhere in the GI tract. On a whim, I went up to talk to the patient after she had recovered from her surgery and asked her if she'd ever had any other surgical procedures. She said that 30 years earlier she'd had part of her thyroid gland removed. I asked her if she remembered what the diagnosis was and she said that her doctor had told her, "Don't worry about it." I dug up the case from our archives and it was a medullary thyroid carcinoma, microscopically identical to the the mesenteric lesion. "Don't worry about it," was paternalistic in the extreme, but it turned out, paradoxically, to be not bad advice. However, I don't recommend this approach, especially in today's world!
Now patients have access to every data point but little or no context in which to place the data and harried physicians have little or no time to explain things properly. Sometimes, in desperation they pass the buck to the pathologist of record, which brings me to my second story. About twice a month I get contacted by a patient or family member trying to understand their pathology, often with a substantial (and understandable!) emotional overlay. Given all the furor about HIPPA regulations and compliance, I don't discuss cases with anyone over the phone, or via e-mail, when I can't positively identify them as properly meriting access to that information.
The latest case involved an adolescent who had undergone a thyroid lobectomy for an encapsulated nodule that the original hospital thought represented an encapsulated follicular variant of papillary carcinoma (FVPC). On review, I interpreted it as a follicular adenoma. The parents were extremely distraught because an original diagnosis of encapsulated FVPC had been now interpreted as benign. Was I SURE of the diagnosis? Had I really changed a cancer (possible death sentence?) diagnosis to a benign one?
Imagine the issues involved in trying to explain this to someone without a medical background who desperately wants to understand. Consider the following points that need to be understood to fully comprehend this particular situation:
1. All cancers are not created equal. Some ARE virtual death sentences, some almost certainly will NOT impact longevity.
2. The diagnosis of FVPC is one of the least reproducible in all of surgical pathology.
3. The biologic behavior of FVPC, especially an encapsulated one, is so close to that of an adenoma that it is virtually impossible to further refine diagnosic criteria without thousands of patient-years of follow up.
4. Overdiagnosing FVPC is undoubtedly common and contributes to the vanishingly low metastatic rate associated with this tumor.
5. Underdiagnosing FVPC may also be common and is unlikely to come back to "bite" the pathologist given the banal nature of this lesion.
6. Any form of papillary thyroid carcinoma, even ones with regional lymph node metastases, has a superb prognosis in children and young adults to the point that they are far more likely to die of other common teenage issues like driving while inebriated or while texting.
For other malignancies a similar list of complicated issues can easily be generated. It's no wonder that harried clinicians try, increasingly, to pass these complex discussions off on anyone and everyone, including their pathologists.
Even the national press and media are woefully ignorant of the basic pathology that they try to report and they have or should have, virtually unlimited access to expert advice. Consider the recent case of the actress Valerie Harper said REPEATEDLY to have inoperable brain cancer as if she had a primary CNS neoplasm. Even the more detailed descriptions that gave the diagnosis of leptomeningeal carcinomatosis treated this as a primary brain lesion. Only a few sites, days later, made the connection that this was, in fact, metastatic disease from a prior lung carcinoma. Lots of information, not so much understanding!
With the advent of molecular/gentic testing for cancer related genes it became abundantly clear that this information should not be conveyed to the patient without adequate counseling. In fact, genetic testing is ONE rare exception to information that's available on "My Chart." I wonder if at least some cancer diagnoses shouldn't fall into the same category? Do we need "cancer counselors?"