I went to a new endocrinologist yesterday. If you read this blog you know that when I couldn’t get my last test results from my previous endo(after a high potassium level that turned out to be a mistake when I retook the test) that was the end of the line for we two.
Since one of my great commitments is to help health care providers better understand the patient experience so that they can partner with and empower patients to perform better self-care, I had my antennae up during this visit.
I will say overall my new endo (no gender to preserve anonymity) came up both exemplary, and lacking in something I particularly care about and feel is invaluable. Early into the intake endo determined we should lower my frequency of lows, as the greater the variance between highs and lows the greater irritation to the blood vessels. I was instructed to take less Lantus and likely up my Apidra: The overall goal is to have less up and downs. So I’m to test as I do now and send the results to endo on a weekly basis. Frankly no endo has ever asked me to do this, so kudos here. Endo also listened and respected my firm stance when I said I have no intention of letting my A1c get above 6. Endo said it may during this transition, but if so, then we’ll get it down again. I liked that I felt heard and I know that made me feel greater enthusiasm to make the transition.
Where endo faltered in my book was in creating relationship with me as a person/patient. The focus was almost entirely clinical, scientific and task-oriented; specifically what I needed to do and how we were going to do it.
Yet, there were so many opportunities when endo could have given me a pat on the back, a sense of partnership, encouragement to continue all the good work I’m doing and commendation for my current results. This would give me even more juice to keep doing well, and I’m already highly motivated –imagine your average patient.
Here were a few missed opportunities:
1. I told endo I intend to be one of those people who gets a medal for 50 years of living successfully with diabetes. Endo made no response: My words just hovered over the desk between us. I felt foolish and unheard.
2. I told endo I don’t want my A1c to go above 6 because the first dozen years my blood sugar was consistently around 200 not having a meter and being on pills for five years (misdiagnosed as a type 2) and so I have some complications. But now that my A1c has been in the 5’s over the past few years due to my diligent diet and daily excericse, endo could have given me a “Good work. You go girl!” But nothing came.
3. When I gave endo a sheet on which to record my A1c result and send to the organization for which I do peer-mentoring work, endo took the sheet, glanced at it, said “I’ll send it” and put the sheet in endo’s in-box. Not a word. Not a, “How nice (great, wonderful, amazing, selfless, well one can dream) you do this work.”
I think it’s imperative when treating diabetes, a chonic illness that relies on behavior change, for health care providers to also be sources of support as well as guidance — primary engines of unleashing patients’ motivation. Wouldn’t it make a difference to you to come out of your doctor’s office having been told you’re doing great, or if not, that you’ll get there? Feeling validated for all the hard work you do? Feeling relieved knowing you have a partner across the desk who sees you? I know these things make a difference: They impact our attitude, resourcefulness and commitment.
Unfortunately, I am not entirely surprised how our session went. Medical training emphasizes illness not patients and does not offer skills training in coaching, sensitivity, getting the context of a patient’s life or deeply listening to patients. Discussing this with a friend who’s a diabetes educator she confirmed this citing the “human-centered” approach of most nurses and the “clinical-centered” approach of most physicians.
As I left the building, I also thought back to a piece of information I received at the end of the American Association of Diabetes Educators conference the beginning of this month. I had my book, “The ABC of Loving Yourself with Diabetes” in their bookstore. Last year the book flew off the shelves and not one remained. This year not one sold. The bookstore manager told me this:
“It’s the economy, less discretionary personal income and cuts in reimbursing purchases. So this year the bulk of the bookstore purchases were really heavy on clinical and accrediting DSME/T programs. None of the teaching tools that usually sell out sold as well this year as in the past two years and other titles comparable to your ABCs did not sell well/at all either.”
So here’s the conundrum: We need patients to change their behavior to better manage diabetes. Yet at the annual conference for diabetes educators what got reimbursed was clinical-related. Why is it so hard to see that without the tools that help motivate, encourage and support patients, behaviors will not change? Further, and studies document this, A1cs will not and are not going down and complications continue that can be avoided.
The score card for my new endo:
Wait time: 30 minutes
Time spent in visit: 1 hour
Manner: Pleasant and respectful
My Questions: Listened to and answered
Relationship: Not fostered. I was not asked: What are your goals?
What’s important to you? What are you successful at
doing? What’s hard for you?
Close: Clinical. I was told to fax my blood sugar numbers every
week yet not told if I had any concerns, worries or
questions while changing my regimen to call or email the
doctor or office.
Score: 6.75 out of 10.
Pros – Thorough, respectful, spends time.
Cons – Almost exclusively disease-based, lacking in relationship-based.