My apologies for not blogging in ages. . .all sorts of encumbrances occurred in the intervening period between my last post and this one. . .
Well, our CIHR funded research project on MUPS – medically unexplained physical symptoms — is winding up. And, it has been a fascinating two years. Overall, it has been an indelibly positive experience. Our interdisciplinary team worked (and continues to work) very well together. I’ve seldom encountered such hard-working, thoughtful, engaged and kind people. Everyone brings 100% of effort to all aspects of the study; each person is perennially willing and happy to help another team member out.
As such, we all hope to be able to work together again. Our intention is to expand our efforts in the future — perhaps to include pediatric patients and physicians and/or, to expand our participant cohort to include other clinical disciplines such as nursing, physical therapy, respiratory therapy, etc..
In terms of translating what we’ve found into action . . . we’d like to establish a clinic(s) which would address the needs of MUPS patients and provide support for the concerns of clinicians who look after them. We are also making efforts to influence undergraduate and clinical education so that they more consciously include uncertainty as a medical possibility. For example, teaching case studies, seldom if ever, include narratives in which there is no diagnostic answer. This needs to change. In addition, we intend to make better and broader contact with the public and with consumers of health care, both about the limits of medical diagnostic models and capacities and, about what patients should nonetheless expect in terms of receiving respectful and competent care from physicians.
Finally, writing and publishing our analysis from the experiential data we gathered is imperative. We recently published an article: “Silos of Silence, Stress and Suffering: Patient and Physician Experiences of MUPS and Diagnostic Uncertainty.” AJOB Neuroscience, 4(3):3-8, 2013. We will be seeking publication for another 3-5 papers this coming winter. These will discuss “best practices” for physicians; coalesce the experiential wisdom of the various participants in the study and draw socio-medical lessons from them; address medical education reforms; highlight communication models and practices in the MUPS clinical encounter and; for the more philosophically minded amongst us, critically assess the ontological challenge that MUPS poses to both patients and physicians.
Again, the work has been demanding but incredibly fruitful and satisfying. Moreover, we seem to be part of a nascent awareness that not all symptoms are fathomable and that MUPS patients and their physicians need not suffer the stress of an unknown illness in isolation.
Best wishes,
Chloe