East Lansing, Michigan, USA
I looked at my fingers, tender after a few glucose finger sticks to the middle and ring fingers of both hands, wondering which fingers to use the next day. No matter how user-friendly blood glucose testing devices have become, finger pricking remains a painful experience that patients with diabetes must endure several times a day. In my case, I did not do these finger sticks because of diabetes; instead, it was part of a small trial to test a new continuous glucose sensor that required frequent blood glucose monitoring for calibration.
This painful personal experience has renewed my conviction that physicians and other health care providers would learn a great deal if they were to personally experience some of the suffering endured by their patients. These experiences would reinforce the importance of empathy, improve the patient-physician relationship, and positively affect “patient compliance” and outcomes. It is currently estimated that the rate of non-compliance to prescription medications in the United States is close to 50%,1 costing over $100 billion in avoidable hospitalizations and 89,000 preventable, premature deaths.1
Some healthcare providers prefer to use the term “adherence” rather than “compliance,”1 a recent change in wording that somewhat diminishes the potential offensiveness that may be construed from the word compliance. So “non-compliance,” the term we tend to use in our daily dialogue, now becomes “non-adherence,” reflecting a gradual change to a patient-physician relationship that emphasizes empathy and mutual respect. Such empathy has indeed the most positive influence on the patient-physician relationship; it has a powerful impact on patients, improving adherence to physicians’ recommendations, which results in healthier outcomes.
As I examined my fingers I began to wonder, what really happens to a patient once he leaves my office with the “order” to monitor his blood glucose four times a day? After experiencing how painful glucose testing can be, I questioned how easy it is for medical professionals to simply make that recommendation, four times a day, every day, seven days a week, and indefinitely. What a painful recommendation! And yet, unknowingly, we merely jot down or e-type a prescription without realizing what happens after our patients leave our offices. Did they understand what we recommended? Did we equip them with the necessary knowledge? Were they embarrassed to mention the financial difficulties of pursuing this recommendation? Were they already so frustrated with their diabetes that self-monitoring may not matter after all? Did we also emphasize lifestyle modifications beyond monitoring their sugars and taking their medications, such as ways to improve their diet and activity levels? Many questions jump to mind, the answers to which can influence patients’ adherence.
I have experienced first-hand how these seemingly minute changes that we as doctors often thoughtlessly recommend to our patients can wreak havoc on their lives. Some years ago a doctor recommended that my 75-year-old father do blood glucose testing three times daily and start on insulin. The first week after that recommendation witnessed a state of emergency in our home. The mere mention of finger pricking and needle shots would be a very big deal in any household. Besides, my father was almost completely blind due to diabetes, and hence, one of my nephews was assigned to manage his glucose monitoring and insulin administration. I recall that I had to spend hours teaching him how to use the glucose meter and give the injections. And talk about the pain of finger pricking! Countless times, I witnessed the silent pain in my father’s eyes and face each time his finger was stuck. Now, whenever I see my most adherent patients checking their glucose levels and administering painful injections several times a day, I admire their endurance and courage just by looking at their fingers. How fortunate that the human skin and tissues can somehow heal so quickly with virtually no scarring.
Our patients are our best teachers. We need to listen to them carefully in order to achieve better adherence and better outcomes. In this age of rushed healthcare, the time physicians spend listening to their patients is diminishing. What realistically can be accomplished in a 15-minute office visit for a patient with uncontrolled diabetes who is on twelve medications? Only by listening attentively can physicians better understand the difficulties that their patients must face in following “doctor’s orders.” In a keynote address at a recent endocrine symposium, a senior patient from our practice shared her personal experience of living with diabetes for 39 years. At the time of her diagnosis, a glucose meter was as big as a moderate-sized book, with painful and cumbersome mechanisms, requiring a much larger blood sample for reading than current models. She shared the embarrassment she felt for her illness and the difficulties she faced trying to be a “good” patient by following the order for frequent glucose monitoring. Nowadays, I recall this patient’s experience whenever I need to recommend a painful task to a patient. I try using phrases such as: “I know it is painful,” “I know it is easier said than done,” “I know how difficult this will be” and other similar phrases, as appropriate.
Doctors are not immune to their own insensitivities. We also enter and leave the healthcare system as patients, parents, friends, and relatives and may have to face the lack of empathy that we offer our patients. It brings to mind the movie, The Doctor, in which a senior surgeon in a teaching hospital assigns his interns and residents to take the roles of their patients, a task that, given the nature of a surgeon, was pleasant for no one. The surgeon had wanted his residents to feel what it was like to be a patient. He wanted them to learn how to be empathetic with their patients. He had learned this lesson himself having previously developed laryngeal cancer. During his treatment, the surgeon had experienced the same painful procedures and lack of empathy on the part of healthcare professionals that his patients frequently had to endure. Ironically, this included undergoing a wrong procedure due to a mix up of names in the holding hall (a barium enema, instead of a laryngoscopy)! This movie always makes me wonder how often we expect our patients to tolerate situations that we would never wish upon ourselves.
The few transient or minor medical conditions and procedures that I have experienced have taught me a lot. There was the vague recurrent abdominal pain I had overlooked for some time, which occurred simultaneously with a vague and nagging right shoulder pain. I ignored this pain for a while without realizing its source—even though every medical student knows that recurrent abdominal pain associated with referred right shoulder pain is biliary colic caused by gall-stones. Ironically, I remember having bragged about my knowledge of referred pain early in medical school and later in residency. My friends and I would pop quizzes to each other during rounds: “What’s the diagnosis for recurrent abdominal pain associated with right shoulder pain?” “Biliary colic!” someone would inevitably shout. But clearly when it came to answering that question in terms of my own health, I was not so quick. So why do we have such high expectations for our patients?
I’ve had a few other minor health experiences that I always keep in mind when caring for my patients. Having undergone the diagnostic fine needle aspirations for a thyroid nodule, I have learned how to best explain the procedure to my patients. I always make sure to mention that I have been through this procedure myself and can understand what they are going through. Having to take medications to treat hypercholesterolemia and pre-diabetes, I am reminded how easy it is to forget to take just two pills, an activity that frequently labels a patient as “non-adherent.” That’s just two pills; some patients I treat are taking many more medications than that. And having experienced the peculiarly interesting, but troublesome, condition of benign positional vertigo has taught me how to relate these symptoms, not as I studied them from medical books, but how the symptoms occurred from personal experience. Patients seem touched when they realize that their doctor has gone through what they are going through.
We learn humility as physicians when we realize that we do not know everything all the time, and we all make mistakes. We learn to listen when we realize that every patient is different from the one seen before and the one after. Thinking deeply about our own experiences as patients can help remind us, as physicians, what our patients go through. Empathizing with our patients strengthens our bond with them and transforms the patient-physician relationship from a routine, dry, and cold encounter to a trusting relationship that can result in healthier outcomes. Our experiences as patients, or as friends or relatives of one, can help us to bring empathy and compassion to our practice if we remember to take the time to listen attentively to our patients, picturing ourselves in their shoes during every office visit.
I would like to thank Mrs. Wendy Kushion, RN, MSN, APRN-BC, CDE, and manager of the Sparrow Regional Diabetes Center in Lansing, Michigan, for her thoughtful review of this manuscript and for her much appreciated suggestions and comments. I also would like to thank all my patients for the trust they have put in me. In particular, I thank them for being invaluable teachers to me.
- Cutler, D. & Everett, W. (2010). Thinking outside the pillbox — Medication adherence as a priority for health care reform. The New England Journal of Medicine, 362, 1-3.
SALEH ALDASOUQI, MD, is an Associate Professor of Medicine at Michigan State University. Dr. Aldasouqi received his MD degree from Jordan University School of Medicine in 1984. He then completed a residency in Internal Medicine at Michigan State University affiliate, Hurley Medical Center in Flint, Michigan, in 1994, followed by a fellowship in Endocrinology, Metabolism and Diabetes at Indiana University in Indianapolis, Indiana in 1996. Dr. Aldasouqi has worked in both private practice and in teaching/academia in the USA and the Middle East, and has been affiliated with Michigan State University since 2004. Dr. Aldasouqi continues to care for patients with endocrine disorders and diabetes, as well as train physicians in endocrinology. He has served as associate editor or reviewer for several medical journals, and has authored or presented over 80 scientific papers and presentations.