Idiopathic: curse or challenge

This sentiment, recently posted by Anonymous on Kevin.com got me thinking:

“Every time I hear the word idiopathic my heart sinks, my eyes fill with tears, and I’m instantly exhausted.  Idiopathic means your doctor gives up.  They give up on a cause.  They give up on a treatment.  They give up on you.”

I suspect Anonymous accurately portrays a common experience, but I see idiopathic differently.

Merriam-Webster says it describes an illness that arises spontaneously or from an obscure or unknown cause, or is peculiar to the individual. (They note it has been in use since  1669, a time when one could argue all illnesses were idiopathic.)

Rather than an excuse to give up on a patient or a problem,or avoid discussions of cause, I’d argue that ‘idiopathic’  can represent a teachable moment for both the patient and their physician, and should be a motivator for particularly personalized and high quality care. Rather than a dead-end pronouncement, it can be the start of something special. Here are some things that the idiopathic mindset should offer:

First, humility. 

  • It should remind us to be honest about how little we know about most diseases, and recognize that much of what we think we know is either incomplete, or will turn out to be wrong in the foreseeable future. Some common examples include ulcers, once a psychosomatic response to stress and now an infectious disease, beta blockers that went from malpractice to required in treating CHF, and the once obligatory use of eye patches for corneal abrasions that we now know delays healing. 
  • More than ever, we should be  committed to regular visits where the agenda is to study our patient and how the disease process is evolving, making an assessment not just of today, but always re-assessing the original diagnosis and plan. 

 

Second, flexibility that allows innovation and creativity. 

  • With a well understood and common illness, it is all too easy to treat the disease and not the person, following the protocol or algorithm and ignoring the patient. We should ALWAYS be attentive and flexible, but with an idiopathic illness, even more so.  In addition to more time and energy listening to the patient, it means being actively open to new information.
  • We don’t know as much about an idiopathic process as we know about other illnesses. Since we don’t know what causes the idiopathic illness, we cannot fully understand what it is doing, how it will (or won’t) progress, how it will respond to treatments, or what the outcome is likely to be. With all this uncertainty, we can ill afford to be dogmatic or authoritarian. Plans for treatment and monitoring will require an extraordinary amount of input from the patient and we
  • We must be more than ever willing to discuss/consider alternative or incompletely tested approaches (provided there is some rationale based on physiology, common sense or data, and there is reason to believe there is greater chance of benefit than harm, and the patient understands and accepts)
  • We must remember that the physician has a nearly infinite areas of developing and changing knowledge to track. The patient can be more focused and should be encouraged to take an active role, using the library, internet, and support groups to look for new information or alternative assessments and bring them in for discussion. (Parameters are useful to assure time and legitimate expectations, and suggestions may be useful, including referral to medical library.)

 

Anonymous concludes with a plea:

 “Idiopathic should not mean the end of the search for answers; rather it should call for a renewed effort to think outside the box for other possibilities and to ‘keep their ears open’ to new developments that could bring future answers.  Instead of being a disease of unknown cause, it should be a disease of yet to be determined cause.  This may seem like a matter of semantics but to a patient it makes a world of difference.  It means there’s hope.”

 

I agree. The comfort we find in familiarity and predictability is an illusion, and sometimes a dangerous illusion. I’d rather work in a field dominated by projects to complete and problems to solve, rather than protocols to follow or algorithms demanding adherence. I understand why Anonymous dreads hearing ‘idiopathic’ but I believe ‘idiopathicity’ can be the foundation for a rewarding collaborative partnership between patient and provider.


 

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