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.

I had my blood drawn two weeks ago to check out my vitals and all were in target range except my potassium. Potassium?! Who even knew they tested your potassium? But I was told it was out of range, high, a “6” and needed to be retested to see whether the test result was accurate.  How important can it be that it might be a little high? [Normal range is 3.5-5.3 mEq/L.] O.K., no sweat. After all how important can potassium be? Certainly not up there with my A1c, cholesterol, triglycerides, microalbumin and thyroid activity.   

Now is when it gets interesting. First, I had to instruct my endocrinologist’s office to send the test results to my general practitioner. Isn’t that what an HMO is all about? Your GP sends you out to specialists who report back? Apparently not. When my GP got the results a day later his assistant called me to say, and I might add sounded a little worried, “Riva, do you know your potassium is high?! The doctor wants you to get it tested again.” “No problem,” I said nonchalantly. I already have an appointment next week to have it retested. I hung up the phone wondering what’s all the fuss about my potassium? 

I suppose my comfort came mostly from the fact that this very thing happened to me once before several years ago, and I’m basically healthy: I eat a Mediterranean-like diet, high in healthy fats, whole grains, low in fats and sugars, plenty of veggies, my weight is in range, I walk every day…But the idea that something might be wrong began to pray on me so I looked up on the internet foods high in potassium to see if that could have caused the spike. If so, I’ll cut down on those foods I decided. In my search naturally I started reading about potassium. The Mayo Clinic site reports, the most common cause of high potassium is impaired kidney function, such as due to acute or chronic kidney failure. High potassium is a life-threatening disorder that can cause muscle fatigue, paralysis, abnormal heart rhythms, nausea and require kidney dialysis.

Whoa, stop the train! Now I’m a little freaked out to be honest. I still believe my number must be wrong but….what if it was right? What if my potassium is now a problem and I’m headed for kidney failure or am already in the early stages? How I will fare with such a fate? Of course I also did read sometimes a report of high blood potassium isn’t accurate. It may be caused by the rupture of red blood cells in the blood sample during or shortly after drawing the sample. The ruptured cells leak their potassium into the serum. This falsely elevates the amount of potassium in the blood sample, even though the potassium level in your body is actually normal. But, achem, I wasn’t quite so confident anymore.

The conclusion to my retest is the first test result was an error and I’m in range. But here’s my real beef. I was retested on a Wednesday, first thing in the morning and called my endo Friday morning to get the results. His assistant told me he wasn’t in but would be in in the afternoon and yes she had the results. I was very clear that I wanted to know the results that day as I didn’t want to go the whole weekend fearing the worst. He didn’t call me back.

I called again Monday morning. I was told my endo was busy all day with patients and the assistant said fleetingly as a throw-away, “He doesn’t call you if your test result is O.K.” But I had no assurance of this. I repeated to her that it wasn’t O.K. before and I’d like to know for sure if that was a mistake. Please ask him to call me.” She said she would leave him the message. He didn’t call.

I called Tuesday morning and she told me, “I gave him the message yesterday. I’ll tell him that you called again.” No return phone call. I called again at 5 PM to find the office closed and so I left this message, more or less. “I can’t understand why after having an abnormal value for my potassium and getting it retested and not knowing whether or not it’s still abnormal and calling Friday, Monday and today, no one has bothered to call me back and let me know if I’m O.K!” It took five days to get me to that point. My husband was already there the first day.

My doctor called the following morning. “What can I do for you,” he said. No apology, very matter of fact, and he told me my potassium is in range. As he was about to get off the phone he said, “I don’t call patients when the results are normal.” I said, “After getting an initial result that wasn’t, it only makes sense I would want to know whether this result was also abnormal or not.” He muttered something that was hard to make out and we hung up.

I began to think about what this policy of only call a patient when there’s a problem creates. It means you don’t even hear from your doctor when there’s a resolution to a problem. Further, don’t you think if your doctor called and said when your test results were all in range, “Your labs are all good, all normal, good work! Keep it up, you’re doing something right and that’s great!” that you’d be more motivated to continue the good work? Yes, it may cost a doctor another half hour a day, or maybe he’d outsource it to his nurse. But right now, without it, it costs patients a lot of mental stress and our healthcare system big bucks. How perverse is our system that hard work and effort go unappreciated and unacknowledged and we’re only told about problems? 

O.K., I’ve ranted, it’s out of my system now, but just between you and me, I’m changing endos.