Medicine, as physician and literary scholar Abraham Fuks has pointed out, often borrows language from the military. Patients “battle” cancer, which “invades” bodily tissues, hoping for a “magic bullet.” Similarly, doctors, unlike lawyers, architects, and accountants, give “orders.” The implication seems to be that while a person who rejects advice from any other sort of professional is a discriminating consumer, someone who fails to follow a doctor’s orders is foolish, self-destructive, or even insubordinate.
Yet, patients do ignore doctor’s orders, and much more frequently than physicians would care to acknowledge. In 2011, nearly half a million admitted patients, 1 to 2 percent, left American hospitals “A.M.A.” — against medical advice. A 2010 Harvard Medical School study showed that about 20 percent of first-time prescriptions are never filled. According to the Centers for Disease Control and Prevention, fewer than two of three Americans over 50 have received recommended screening for colon cancer.
Cost, discomfort, inconvenience, fear, embarrassment, misinformation, and the difficulty of changing behaviors (especially regarding smoking, diet, and exercise) all contribute to what’s called “medical noncompliance.” We doctors understand this. In fact, we’re notoriously bad patients ourselves. For the record, I don’t think I’ve ever 100-percent completed a four-times-a-day course of antibiotics, and my annual mammogram has been, on occasion, biennial.
Still, when faced with a patient who stubbornly refuses to do what’s so obviously right — i.e. what I tell him or her to do! — I find myself slipping into that military mentality. Why isn’t the patient following my orders? Is he or she questioning my authority? Have I failed to communicate my orders effectively? Is it the patient’s fault, or mine? Either way noncompliance often leaves me frustrated.
“Frustration” would certainly describe my feelings during the first several years of my relationship with a patient named Paul. He’s a charming and intelligent man, now in his 50’s, whom I first met over 20 years ago. Paul has a strong family history of cardiovascular disease, but he balked at taking medication for his high blood pressure, and often skipped appointments. I didn’t understand why this seemingly reasonable man would act so unreasonably.
I was even more mystified when, about five years ago, Paul developed diabetes and continued with his noncompliant ways. High blood pressure often causes no symptoms, but high blood sugar causes fatigue, blurry vision, frequent urination, and other bothersome symptoms — not to mention the risk of dire future complications like kidney failure and blindness. Wouldn’t he be motivated to prevent these? Apparently not. He did start exercising and cut down on sweets but refused to accept the medication and aggressive monitoring required to normalize his blood sugar. Also, he avoided me. When we did meet, I alternately cajoled and harangued Paul, but nothing seemed to penetrate his resistance.
A couple of years ago, seemingly out of the blue, Paul started to deal with his high blood pressure and diabetes. He ate well, exercised, took medication, and came in for scheduled appointments with me and with Leah Giunta, a nurse practitioner who provides coaching for diabetes patients in my practice.
I found Paul’s new behavior as mysterious as his old behavior.
Just recently, I asked Paul to explain both his noncompliance and his change of heart to me. I’d asked him many times before to help me understand his reluctance to take my advice but there was something about responding in writing, or perhaps responding after he’d overcome this reluctance himself, that finally allowed him to answer my questions fully. He’s kindly allowed me to share his response here:
Hi Dr. Koven:
Here’s my best take at what was behind my resistance:
1. For some reason, taking a pill every day to solve a health problem feels like a defeat, while solving the problem through behavior/diet modification feels like a success.
2. A basic mistrust is triggered in me every time I witness a large marketing effort trying to push a drug on me. It goes back to the fact that somewhere along the line I developed a mistrust of the pharmaceutical companies.
3. I have a spontaneous, creative, streak. It feels confining and defeating to have a regimented routine.
Putting 1, 2, and 3 together, you end up with a huge resistance. Some giant drug cartel is making me follow this regimented pill-taking routine for the rest of my life, and it feels like a defeat every morning when I take the pill? NO WAY!
I believe some of the things that have contributed to me overcoming this are:
1. Symptoms of the high blood sugar finally started catching up with me, in the form of extreme fatigue and manifestations of circulatory problems, which I think was even impacting my ability to think clearly, as well as possibly leading to sores on my legs.
2. The above combined with knowledge of diabetes in my family (including a relative who had both legs amputated) started making me have anxiety over what was in store. I had a very vivid dream of a guy with no legs in a wheelchair. When I woke up I realized this was me in the future if I didn’t do something drastic.
3. I have gained a more balanced perspective on my distrust of pharmaceutical companies and big marketing efforts. There is truth in my concerns, but it doesn’t mean that the profit motive doesn’t also have a desirable effect, i.e. creating medications that actually solve problems.
So putting all of the above together I agreed to whatever you and Leah prescribed in conjunction with a massive new push towards behavior/diet changes. I now refer to bread as “death bread” and cookies as “death cookies.”
Last test showed blood sugar in normal range, as you know.
Thanks for giving me the opportunity to reflect on this subject!
Reading this, I realized that there was probably little I could have said to change Paul’s mind. He was in command. The orders he awaited were his own.Dr. Suzanne Koven is a primary care internist at Massachusetts General Hospital. Read her blog on Boston.com/Health. She can be reached at email@example.com.