My last post asked you if you like your endo. I was frankly surprised I got so many positive responses. I wouldn't go so far as to say I now think more people are happy with their endo than not, but I am happy to know there seem to be a fair share who are. All you who don't like your endo are probably too busy shopping for a new one to write in ;)
I went to a new endocrinologist yesterday. After 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 and intended to create a score card, which I have done.
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 but you'll have to read on to know. Early into the intake my new 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. I expressed a firm stance that I have no intention of letting my A1c get above 6 and endo listened. Endo said it may go up somewhat during this transition, but if so, then we'll get it down again. I felt heard and thus agreed to make the transition.
Where endo faltered in my book was in creating a 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 sense we were partners, 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. I'm already highly motivated, imagine what it would do for the average patient.
Here were the missed opportunities to validate patient-me:
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 excercise I intend to keep it there. 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 it to the organization for which I do peer-mentoring, 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 to gear up 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? That the two of you will get there together? 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 fundamentally 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 or sensitivity or asking questions to understand 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. The book coaches readers to develop and use more positive emotions to sustain self-care behaviors. 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, 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 solely clinical-related. Why is it so hard to see that without the tools that help motivate, encourage and support patients, behaviors do not change? And, and studies document this, A1cs will not/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 I should call or email.
Score: 6.75 out of 10.
Pros - Thorough, respectful, spends time.
Cons - Almost exclusively disease-based, lacking in relationship-based.
(Reprinted from my blog post at diabetes stories, http://www.diabetesstories.com/stories_blog/)