The Tremendous Effort To Look Normal

At the MedCity ENGAGE Conference recently Dr. Victor Montori made this statement about chronically ill patients. "They look normal because of their tremendous effort to look normal."

@AfternoonNapper alerted me to the closing speech of this conference given by Dr. Montori, whose name is strongly associated with the concept of the  "burden of care" that is shouldered by chronically ill patients.  I am sure that all of you with one or more complicated conditions said at this point "I know exactly what you mean by that."  @AfternoonNapper also says "Montori has emerged as a general in the Spoonie army"

                                             General of the Spoonie Army            AMcKinnon

Another term that I had never heard until I started to read medical papers and articles was CCC which stands for Complex Chronic Conditions.  There are few organizations that acknowledge this reality and the efforts necessary for patients who are trying to do less and still maintain good health.  I found one example in BridgePoint Health, as an organization that is trying to use a new strategy to deal with these issues by using "nimble and flexible" strategies through collaborations that put the patient at the center of care.

We need to try to advance to minimally disruptive care with patient centered strategies and it is possible to do it.  As an example: I went to a hospital once for pre-op appointments and instead of being sent all over the hospital there was a central core area with patients in little rooms all around the room.  The various blood tests and info gathering that had to occur were done by a team that circulated around the perimeter with great efficiency as the patients waited in one place.  That's a pretty basic example yet it made the afternoon of appointments so much less stressful.

                                         Patient centered care (me in the middle)

The issues of compliance and concordance in my last blog post could be improved by making the care process easier and more coordinated.

I was working on this post for a few days and I went back to twitter to see what Afternoon Napper had been saying, only to see this link at the top of my Tweet stream. Re-imagining Healthcare: The Northwest Territories Transitions to an Integrated Chronic Disease Management Strategy. Since chronic disease accounts for 70% of deaths and 50% of hospital stays in that area, a new strategy for dealing with chronic disease is seen as necessary and this paper details efforts in the Northwest Territories.

Unsurprisingly Afternoon Napper had a lot to say and pointed the way to another blog about Minimally Disruptive Medicine. I liked the Goldilocks synonym best of course. 

                                                         This porridge is too hot

In this interesting blog by Carolyn Thomas of Heart Sisters you can read more about burden of treatment and also on Marianna Paulson's Rheumful of Tips blog.  I did not expect to find so much information on this topic - clearly I am behind the curve.

The whole paper is here: Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice.