What's Urgent? What's Important? An Open Letter to Educators in Diabetes

In my job as administrator and clinician, I struggle with the demands of wearing both hats. I've learned that I have to call the accounting staff with billing problems before they leave at 4:00 p.m., but I can return calls from patients when they are home in the evening. Most times, though, the juggling act is more nuanced, and I can easily lose my way. One Friday afternoon, I was working on the department budget after asking for two extensions of the deadline. We'd been mandated to cut our budget for the next year, and I was struggling to identify what to cut from an already lean budget.

Steve, a 24-year-old patient with type 1 diabetes, knocked at my door. Our office is by the train station, and he frequently stopped by to chat on his way home. His familiar greeting “Hey, what's up?” was followed by,“Got a minute?” I wanted to say “No, I have an overdue budget and can't find anything to cut!” I've known Steve for years, from the day he was diagnosed; I could have told him that. But he kept moving from one foot to the other, and my nurse intuition told me something was up.

The budget would have to wait. The budget was urgent; Steve was important.

Steve closed the door, sat down, and quickly decompensated. He talked of depression and described a plan for suicide. Hours later, when he was admitted to the hospital's inpatient psychiatric unit, I started to shake. What if I had told him I couldn't talk to him just then?

Never let the urgent crowd out the important.

John Aloia, MD, my dear friend and mentor, says good teachers are generous people. They want to share what they know. I always think of that when I am counseling novice diabetes educators who want to include everything they know about diabetes in one visit. They are so eager to share what they know that they forget the principles of adult learning.

The ancients tell a story about generosity that reminds me to thank all of my teachers, including patients, my husband, family members, colleagues, and friends. The story is attributed to a monk who heard footsteps behind him while he was walking. Realizing that he was being stalked by a thief, he turned and said, “Dear sir, you see this pure gold begging bowl? It was a gift to me. Take it now so you don't disturb my sleep tonight.” The next morning when the monk awoke, standing over him was the same thief... waiting. “Friend,” said the monk, “believe me, I have nothing else to give you.” The thief replied, “I have not come back for things. What I want now is what you have inside you that enabled you to give away the gold in the first place.”

All of us have been blessed by this deep generosity found in the diabetes community. One of my patients, whose name is Wes, participated in our program at the diabetes education center. Whenever Wes called, he would fire off question after question. “Does lamb have cholesterol? Can I eat lima beans? What is LDL?” As soon as I would begin to answer, he would fire off another slew of questions. Somehow, the calls would end, and I would be exhausted and frustrated. I didn't get to answer one question, and he learned nothing.

It got to the point that, when Wes would call, I would ask our administrative assistants to take a message. I had to prepare myself for his calls, and I'd procrastinate as long as I could. I knew this wasn't working,but I didn't know what to do. So I picked up the phone and called Richard R. Rubin, PhD, CDE. We'd never met, but I'd read his work and knew he'd have the insight I needed.

I peppered Richard with questions. “What am I doing wrong? He asks but won't wait for an answer. How can I help him? What need do these calls meet?” And don't think it was lost on me that I was starting to sound like Wes. Richard helped me to see that I had to find out what Wes was avoiding, what he was afraid of. Richard gave this anonymous diabetes educator a gold begging bowl.

By the way, I boldly accepted Wes' next call and awkwardly reframed his questions until we were face to face with his fears. Like all lessons, this one has many layers: the generosity of a stranger, the desire to help, the emotional burden of diabetes.

Thank your teachers.

About 20 years ago, my friend and colleague, Kathryn Godley, RN, CDE, and I met with health plan administrators in the state of New York in an effort to secure reimbursement for diabetes education. We prepared as best we could with the limited data available about our evolving specialty. At the end of a full day's meeting, one of the health plan key decision makers pushed away from the meeting table and said, “Why can't you just give them a booklet? My brother-in-law just had a heart attack, and they gave him a booklet called Your Heart Attack. Just give people a booklet called Your Diabetes.” I can still feel the sting of that remark.

Kathryn and I saw the long road ahead of us. Health plan administrators needed to know what was different about diabetes education. Our collective efforts across the country were imperative: certification of our specialty,development of the National Standards for Diabetes Self-Management Education,the redefinition of diabetes education as a behavioral science. We needed research, data, and a curriculum. Thanks to all in the diabetes community who have brought us so far along that journey.

All of those efforts addressed the science of diabetes education, but what about the art? We also have a responsibility to learn how to drive the self-management message home.

One of my favorite stories that I use to teach patients about informed choice involves the family recipe for the pumpkin pie served at Thanksgiving dinner. I describe a delicious, mouth-watering pumpkin pie and then ask the patients in the class what they would do at dessert time when the pumpkin pie is served. There are the virtuous, who would skip the pie, those who would take just a sliver, and those who skip the potatoes and count the carbs in pie instead. Then I tell them my suggestion: have a huge hunk of pie with whipped cream! We talk about why that's a viable option. We laugh about the eye-rolling response from the family, and the patients often verbalize their relief at learning practical solutions to real-life situations.

The pumpkin pie story never fails as a way to spark discussion about psychosocial issues. One patient who had been to our program 10 years before came back for an update. He sat with me and said, “You know those classes were very helpful in general, but there's one thing I learned that helped me time and time again, and I'll never forget it. Your story about the cheesecake at Thanksgiving dinner.” Cheesecake? It was pumpkin pie. It's always been pumpkin pie. I found out later that he didn't like pumpkin pie, so he inserted cheesecake, his favorite dessert. A picture may be worth a thousand words but ownership of the picture is priceless.

Appreciate the art and science of diabetes education.

To this day, when I'm at a large diabetes meeting, I feel the power of shared values. We don't all agree on every aspect of diabetes care and education, but we are all committed to improving the lives of people with diabetes. One of the unique features of diabetes care is the foundation of the multidisciplinary team. I bring the study of nursing to my interactions, and I've learned so much from dietitians, physicians, researchers, and many other disciplines. Collaboration enriches our practice and each other. As an American Diabetes Association volunteer, I have had the pleasure to rub elbows with those whose work has shaped our careers. Imagine that! Just as we all feel that we receive more than we give in our work with patients, the same can be said of our volunteer work.

Seek the pleasure of collaboration. Find others with similar values.

I often come home after a long day and tell my husband, “I'm exhausted. I listened all day.” Listening is probably the most important skill we can develop as both student and teacher. When I first started in diabetes education almost 30 years ago, my practice was inpatient-based. One day, I went to see a patient and brought a copy of every booklet and handout that I had collected. When I went to his room, he greeted me kindly and then excused himself and went into the lavatory—for a long time. I left all my booklets on his bedside stand with a note saying I'd be back later. When I returned, he was at X-ray and all of my booklets were in the trash. But I was determined to help him, so I returned the next day with a fresh pile of booklets. He went back to the lavatory.

You'll be relieved to know that I've learned a lot about readiness since then. But it was the patient I never taught who taught me about readiness.

A graduate student in nursing was with me one day when I was seeing a patient. The phone was ringing, there was someone at the door, my pager was going off, and I was trying to attend to everything at once. The student simply said, “This is not a one-person office.” I couldn't see the forest for the trees, but she could. My student was my teacher. To this day,when I feel pulled in all directions, I hear, “This is not a one-person office,” and I try to regroup.

Be a student and a teacher.

In bearing witness to the daily burden of life with diabetes, we share a privileged intimacy with patients. For some people, diabetes is the least of what they are trying to cope with. I wish I could take the burden away, but since I can't, I try to lighten the load. Sometimes that means that there's a gadget that will make life with diabetes easier. Sometimes it's giving validation by noting that even experts are stumped by fluctuating blood glucose levels. Sometimes it's offering hope.

In my experience, all the data in the world can't stop parents from crying when their child is diagnosed with diabetes, can't ease the pain when a grown man says, “But that was my favorite toe they amputated,” can't relieve the anxiety of someone who says, “I know what to eat, but I just can't do it!” At least we can try to lighten the load.

If you cannot lift someone's burden, try to lighten the load.

OK, I'll admit it. I've been involved in diabetes education for so long that I used to teach people how to boil their glass syringes and sharpen their insulin needles. Life with diabetes has definitely changed, but it's also become increasingly complex. We've been challenged to teach this complexity across all cultures and ages, and to highly diverse families. We have a social responsibility both at home and around the world. It's serious work. Humor and creativity, however, connect and enrich us all. In diabetes education, we now have Conversation Maps to add a fresh approach. I'm anxious to see what education in diabetes can and will become.

Be inventive and creative. Use humor and have fun.

A patient recently told us that our diabetes education center was like the global positioning system he uses in his car. “It gives me direction,” he said. “If I defy it and then get lost, it calmly and without judgment brings me back on track, just like diabetes educators.”

Isn't it wonderful to be a part of so many lives?

With humility and heartfelt sincerity,

Ginny

P.S.: In memory of my beloved parents, Jean and Augie Peragallo