Saturday, 8 June 2013

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.  



  1. Hello Annette,
    Great minds think alike - just today I too posted a new article that basically encapsulates Dr. Montori's theme on the chronically ill, who "look normal because of their tremendous effort to look normal" - called "To Just Be A Person, And Not a Patient Anymore" -

    Thanks especially for including a link here to Dr. Montori's closing presentation at MedCity Engage. His message is so important - but I'm concerned that even the patients who may benefit most from MDM may in fact be misinterpreting the message.

    For example, when I enthusiastically opened a discussion on Mininally Disruptive Medicine on's WomenHeart support community, I was stunned by the comments from a number of heart patients who responded. Many interpret Minimally Disruptive Medicine to mean "minimal care", arguing that it's hard enough as it is to have doctors take female heart patients seriously, and now you're wanting to encourage docs to do even LESS to help us!

    You and I clearly don't interpret MDM like this, but we should be aware of these potential obstacles (even among patients you'd think would be most likely to embrace the concept).

    I was also excited to see @afternoonnapper's Tweet hailing Dr. Montori as "a general in the Spoonie army". Brilliant and so well-deserved.


  2. Lucky that I got mine posted before I saw your thoughtful and thorough look at the topic. The post was going to go in another direction completely but did not cooperate.

    I got a tweet from Dr. Montori asking for ideas to "turn this mutual identification and language into a movement" You're doing a lot towards that.
    The idea of more interdisciplinary cooperation really appeals to me. Everyone seems to try to load all of these initiatives onto the doctor's plates and as they point out, this is not the way they are reimbursed in most cases.

  3. Thanks for the link, Annette.

    That hospital you went to deserves an award for patient-centred care. It reminds me of my trip to the Mayo Clinic. I was impressed about the efficiency of the set-up there.

    I am certain that change will occur, spear-headed by forward-thinkers such as Dr. Montori and The Stanton Territorial Hospital in partnership with the Can. Health Services Research Foundation.

  4. That was a one time experience so far and I wish there were more that were so efficient. For the fracture clinic at my hospital you need to pack a lunch. It is always overful.
    Such a contrast to the hand clinic which is efficient, on time and calm.

  5. I was just about to say Carolyn Thomas wrote on the same theme and then I see her comment here :-) This whole concept is quite new to me, but I am grateful to you both for wakening me up to it. For many years my advocacy has been focused firmly on cancer; it's only in the last year that I've looked around and started to learn from other advocates like yourself and Carolyn. I am looking forward to expanding my horizons more at Medicine X.

  6. Thanks for your continued support Annette. And thanks for helping by joining the Super Spoonie Story Swap and to build a Spoonie Blog Network. I hope it will be another valuable resource for us folks taking it hour by hour.