By Victor Montori
I am often on the road discussing minimally disruptive medicine with colleagues elsewhere. For some reason I never hear disagreement with the basic statements of concern (we are responsible for some of the non adherence by virtue of our endless and uncoordinated demand for more work on chronically ill patients with multiple comorbidities). When I suggest something needs to be done about this, e.g., reject disease specific quality and performance measures, work for integrated care around patient needs, assess and reduce treatment burden, I get a sense of impotence, of inability to create change, to truly advocate for the patients’ interests. Why do you think this is the case?
When patients opt out of their medical care, we think it is because they may be ignorant about the implications of disease and the effects of treatment. This intentional noncompliance sounds to me as a target for improved communication and education. Even shared decision making. If patients make informed choices about what to do and what not to do, that is not noncompliance. That is informed patient choice. An exercise of people’s values and preferences with full understanding of the opportunity costs of taking and not taking action in their specific context. This is sometimes confused, but some folks understand it – e.g. this article in LA Times. The focus of my attention, however, is poor treatment fidelity – poor follow-through with an agreed upon plan of action.
Poor treatment fidelity can be caused by our transferring to patients the demands for optimal care we feel as part of misguided performance improvement campaigns, by poor care coordination, and by blindness to the burden of treatment and to the (limited or shrinking) capacity that patients and family have available or able to muster to implement treatments. It is this reality that is within our reach and, as I indicated in the first paragraph, it is something about which I find professionals feeling impotent. Why?
My colleague Barbara Koenig pointed me to this article by the late historian Tony Judt commenting on the work of Czeslaw Milosz and specifically on The Captive Mind. The key phrase Judt offered that seems pertinent to this discussion is: “Above all, the thrall in which an ideology holds a people is best measured by their collective inability to imagine alternatives.” Is the impotence I have observed the result of this inability to imagine alternatives? Can minimally disruptive medicine offer these?