Marc Pierson’s Community Weblog

Shared Care Plan. This is a very exciting program. Shared Care Plan is clearly a major step forward in improving the communication between… [:: Chemo Chronicles '04 ::]

Craig Miles writes, “As a cancer patient, I deal with my cancer as a chronic illness and I found this document to be better than anything I had for keeping informed and for sharing with caregivers. I plan to share this with my healthcare team at Kaiser.”

“Too often, we think empowerment is patient-oriented, I think this misses the point. The entire healthcare team needs to be empowered.”

A few days ago a group of patients and their families talked to Ed Wagner about their experiences in Pursuing Perfection in Whatcom county.  Each of these patients had a clinical care specialists and a shared care plan. What I heard changed my thinking.

They described the role of the shared care plan differently than I had expected. As I listened I came to see that for them it was a cultural artifact, an object around which improved conversations can occur. In the doctor's office, a paper copy is used to help the physician or nurse understand where the patient is in their goals and understanding. Likewise this piece of paper helps the patient learn from physician or nurse. They can write down and discuss medical concepts, diagnoses, medications, goals and plans. I heard that without this piece of paper the 15 minutes of an office visit is often confusing and less valuable. I heard over and over that this piece of paper help create a relationship between the doctor and patient that is more like a partnership than a trip to the principles office. One patient's daughter made the cute comment, “Dad is getting kind of uppity. He uses big medical words now.” The point I took away is that now he understands the meaning of important medical concepts and that he, with his family and care team, can do a better job of managing his situation with diabetes.

Even more surprising was the story of a family. Before the shared care plan, “Dad, did not want to bother us with his diabetes.” Little communication about his needs for special diet, exercise, and medications occurred, due to his desire not to be a burden. Since the daughters and wife have access to his shared care plan, they now print it out and talk together about what they can do to help. They have all changed their diets as they learned to change the cooking for their father. They understand more about what they can do to reduce the chances that they and their children will develop type II diabetes. This simple piece of paper has become the focus of new family conversations that help everyone. It has obviously added meaningfully to the lives of this family.

Something important is happening here. We are discovering with patients how to move beyond business medical records (which help physicians and nurses get the information they need and help insure that they get paid for what they did) toward a shared document about which learning and planning for improved self-care and partnerships can develop.

You can download a Microsoft Word version of the Shared Care Plan from https://www.patientpowered.org/PatientSite/Login.asp and you can look at the on-line electronic version which prints out for those who have assess to it. In Whatcom county, Washington, we are opening up use of the electronic version to patients and their families and caregivers.

For those of you who what to know more about the best thinking for how communities can support their citizens with chronic medical conditions, I recommend the Improving Chronic Illness Care site http://www.improvingchroniccare.org/index.html

There is a really interesting book by Robert E. Quinn, Deep Change. Figure 14.1 on page 123 is very interesting. Read the book to see Quinn's insights on these three paradigms. It sure puts a lot of things into understandable context. The bold highlights are mine.

Please understand that transactional paradigm includes the technical paradigm and that the transformational paradigm includes both the technical and transactional. Developmentally the technical paradigm comes first and is not necessarily accompanied by the transactional or transformational wisdoms.

If deep or transformational change requires commitment to realizing a vision (that does not exist in reality yet), if it requires “action learning” (something poorly understood generally), if it requires highly complex strategy (when highly simplistic strategy is the best one commonly sees), and if it requires “personal rebirth” something usually left to religious and spiritual realms… well there is work to do.

Building Trust, by Flores and Solomon is a really good book. I rank it with The Wisdom of Insecurity, by Alan Watts as two of the most mind altering books I have read. Watts turned the conventional wisdom of insecurity on it's head, essentially showing that security or fixedness is closer to death and that insecurity or uncertainty is closer to life. When his wisdom sinks in, one comes to appreciate insecurity for what it is–the experience life-giving growth. On can then quit amplifying a certain amount of natural stress, by dropping the judgment that insecurity is bad.

Flores and Solomon turn broken trust and betrayal on their heads, as Watts did with insecurity. They allow one to see that trust and betrayal are sides of the same coin (one meaningless without the possibility of the other) and they also allow one to see that creating and rebuilding trust is the key act in creating a better and shared future. Without such acts of trusting and rebuilding of trust from moments of betrayal, no better future is possible. Trust is not a thing to be shattered. Trusting is a competency for all forward looking people to practice and learn–a verb, not a noun.

Below is a kind of relationship diagram that captures some of the ideas that filled my head as I read the book.

A friend of mine, Gervase Bushe, wrote a very useful book: Clear Leadership. The insights and framework are based upon his career as a professor and business consultant

Clear Leadership is full of practical and immediately useful mental models and advice. Organizations are beginning to use it as a framework for leadership training at all levels.

After reading this book, I created a mnemonic and a drawing that help me keep a few of the book's key points in mind and handy for my use. I give them to you with Gervase's permission.

SOFTeNeD stories and maps.

Sensing–what is my body telling me? Am I poised for a fight, to flee, to hear, to learn, to have fun, etc.

Observing–what would others agree happened, what was objective, what data can we agree upon and share?

Feeling–awareness of feelings is very useful early on, as feeling color everything else.

experience, each person has a different one

Need (want)–what do I want to happen, what do I want in the way of agreements.

experience, our stories come from our experience, we can share these and ask others to share their's. Experience is subjective and has numerous aspects (SOFTND)

Do–what will I do and what will I agree to do?

This little graphic represents for me Gervase's four profound senses of self and matching sets of skills:

Appreciative self–the halos, understand what you and the other have done that you would like to see more of. It is a kind of “assets based” approach or “appreciative” approach and comes form the appreciative inquiry framework.

Aware self–the recursive loop, suggests that we spend time first going over the SOFTeNeD algorithm personally, before trying to tell others or ask others.

Descriptive self–the arrow from my mouth to the other's ear, suggests that I must describe my SOFTeNeD stories and maps to the other in an appreciative frame and expressing understanding that it is only my experience, not all facts.

Curious self–the arrow from the other's mouth to my ear, suggests that I must have skill in asking and hearing about their experiences and if possible their SOFTeNeD stories and maps. I try to hear in an appreciative frame.

It has been about a year since I read this book and I have not reviewed it for this post. I hope you will pick the book up and work with the concepts in it. We can all do our parts to reduce the “interpersonal mush” in our organizations and communities as well as at home.

I have gradually come to realize that I unconsciously make a binary choice each time I think or act. I get out of my bed either on the defensive side or the learning side.

I either start my day holding on to… you name it. Or, I start my day open, willing and interested in learning, being vulnerable, wrong, embarrassed, over worked, surprised, delighted…open to a different future than I had yesterday. I think that it is this almost unconscious step that determines what is possible and what happens.

This is a short and somewhat personal post. I doubt that it requires more explaination.

I am just trying to be more aware of that first step each morning and each moment.

A friend sent me a link to this poem. I pass it on to you. It is good and it rings true. It is by a doctor and more or less for doctors. But all may appreciate the sentiments.

A few lines:

“For the head will explain
      but the final common pathway is the heart
      whatever kingdom may come
For what matters finally is how the human spirit is spent”

Click here. 

Healthcare is science, reason and caring. May none be missing.

My invaluable assistant, Jill Hickok, told me about an NPR presentation on the use of story telling in medicine. We are trying to do something similar in Whatcom County to heighten the awareness and understanding of the relational aspects of medicine, especially chronic conditions.

We are coming to believe that among all the change and stresses of medicine the experience is loosing it's meaning for some providers and patients. Focusing on people and their stories is one way to combat the cynicism fostered by a broken or non-existent system of care. Most of us came into the profession because of a love people and a deep interest in people and their stories.

Here is a link to the NPR piece: http://www.npr.org/features/feature.php?wfId=1480863   (I hope their RealPlayer download works better for you than it did for me. May be a firewall issue. I will try it at home tonight.)

Here is a link to a piece on the physician that is spearheading the effort, Rita Charon, M.D., Ph.D.

http://litsite.alaska.edu/uaa/healing/medicine.html

Here is a link to a biosketch on Dr. Charon. http://www.medinfo.ufl.edu/other/histmed/charon.html

I hope to learn more about this approach.

I have heard Dr. Rachel Remen talk about the power of story telling.  I find stories more transformative than powerpoint and analytical data. Perhaps it is because they contain what we find most interesting and important–other people.

Here are links to her work: http://www.rachelremen.com/; http://www.meaninginmedicine.org/about_fmm.html; http://www.almanacnews.com/morgue/2000/2000_04_12.hfa.html.