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Thursday, August 20, 2020

Mis(sed)-Diagnosis

Earlier this year I was struck by the narrative in a story on Healthline regarding misdiagnosis. It focuses upon the experience of one healthy young patient, misdiagnosed by her primary care provider, and fortunately saved and treated nonetheless. The article espouses a troubling statistic of perhaps 12 million Americans being misdiagnosed every year, with roughly half of those instances resulting in harm.

I immediately thought of our modern age, the leaps and bounds of medical scientific progress, the technology, and all suggestions are medical care should be paramount. I know people who have presented in an emergency room and received a CT scan the same afternoon. There are a plethora of blood tests, urinalysis, and otherwise that provide support in the pursuit, diagnosis, and plan of treatment. Yet in our 2020, diagnosis apparently still continues to elude us in a significant number of instances.

The second thought that occurred to me, is the ever-present family history portion found in most medical reports. It is systemic that doctors ask what maladies or conditions run in our family tree. But, it may be impractical even in this age to expect ourselves to possess such knowledge with any certainty.

It is entirely possible that members of your family have passed, without any autopsy ever being performed. Therefore, it is likewise possible that your immediate ancestors had maladies and conditions that were never diagnosed or treated. Do you know your grandparents' or great-grandparents' medical history (or their siblings?) It is important that we remember that a great many of us have limited and imperfect knowledge of even our parents' medical history, but likely less knowledge beyond that generation. Absent hearsay, or notations in a family Bible, it is practical to expect that we have no knowledge whatever beyond three generations.

Compounding this limited written personal history is the potential conjecture that misdiagnosis was perhaps more prevalent 100 years ago that it is today. The concept of requiring education in order to be a doctor is reasonably recent, according to The Atlantic. In the recent past, individuals became a doctor by working with someone else who was a doctor. There was an apparent lack of standards and standardization in terms of qualification or experience. It is entirely possible that your great-grandparents may have been diagnosed with some malady based upon minimal medical evidence, an opinion formed upon potentially imperfect information, or inadequate experience. They might have been diagnosed and treated with/by the best available, but still not with the science of our modern medicine. 

And, even if they were blessed with an exceptionally experienced and qualified physician, the potential still remains that diagnoses were made without the kind of diagnostic testing to which we have become accustomed. Or, perhaps worse, that their diagnosis was missed entirely. This is not to suggest that family history is irrelevant, or unimportant. This is to suggest that family history, like so much else regarding our health, remains imperfect and potentially flawed. The presence of such knowledge is potentially helpful to the situation, but an absence of known family history may be of less import. 

Unfortunately, in our youth, we were all likely at best inattentive to the various complaints of our forebears. At best, perhaps, we may have noticed as children that some ancestor was ill or did not feel well. Perhaps there is even some vague recollection of persistent symptomatic complaints. However, it seems unlikely that one will be able to accurately recite a series of symptoms from one’s youth.

The family history is, therefore, a worthy topic. But, more so, how many of us can accurately recall when and where we personally suffered injury, symptom, or were treated for a malady? If a physician prescribed a medication for you for some period of months in the last ten years, how likely is it that you can recall the name of that drug or the dates you used it? Perhaps more likely as chronicity increases or recency supports. But, it may be natural for us to forget temporary symptoms or treatments as time passes. Despite this, those may potentially be of importance in our future.

We are thus likely to be imperfect historians. In providing information to our physician we may be well advised to research family history with older family members to the extent we can. But, it is unlikely we can provide extensive or reliable information. Despite this, the family history is seen as "a critical element in risk assessment for many conditions" according to the Journal of General Internal Medicine. Those authors suggest obtaining a "pedigree that includes at least 3 generations." They suggest that critical information for those generations includes at least:
"Age or year of birth; Age and cause of death (for those deceased); Ethnic background of each grandparent; Relevant health information (e.g., height and weight); Illnesses and age at diagnosis" 
The realization comes upon us as we age that each of us will eventually necessitate the assistance of medical science. With the potential for misdiagnosis, it is incumbent upon us to participate in our medical care actively. Do you have any idea of the "critical information" elements listed above for three generations of your personal history? If not, perhaps the time is right to begin assembling such before it is asked for?