As type 1 PWDs, Amy and I have both had to accept that we need insulin, but having diabetes has also left open the door to other possible meds, like a statin or an ACE inhibitor, which have clear pros and cons. In other words, there are sometimes tough decisions to face about how aggressively to tackle a health problem.
How do you decide which treatment is best for you? It's not always as simple as just doing what the doctor says, or reading up on studies, or asking friends and family. Most of the time, it's a combination of all three.
A new book called Your Medical Mind: How to Decide What Is Right For You focuses on just this — the psychological aspect of the decision-making process in whether or not to accept a recommended treatment. It's written by two physicians at Harvard Medical School, Dr. Jerome Groopman, an oncologist, and Dr. Pamela Hartzband, an endocrinologist (who specializes in thyroid conditions, not diabetes).
What makes someone decide not to take a medication that offers a health benefit to them? Groopman and Hartzband break down personality profiles of various patients: believers in medicines vs. doubters in medicine, and so-called "maximizers" vs. "minimizers" in the amount of medication or treatments or procedures they will seek in order to be fully healthy. Each one of us falls somewhere in the spectrum, and our mindset is the foundation for how we view our healthcare and our relationships with our doctors.
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The authors also note that we are conditioned to view medicine from a variety of factors: how we were raised (did our parents take us to the doctors immediately or try a more natural approach?); our interactions with patients sharing our same disease and the experiences they had (the diabetes online community, for example!); and our interactions with our own physician and the way they present treatment options to us.
For example, there's the story of Susan, a woman with high cholesterol, whose father has high cholesterol, too, and didn't take a statin but lived a long life. Despite an active lifestyle and healthy diet, Susan's cholesterol refuses to come down. Susan is well-educated about statins and the statistical risk of heart disease, yet she still refused a statin because she believed her risk of a heart attack was lower than the risk of experiencing a debilitating statin side effect.
Another anecdote is about a forty-something type 2 PWD named Patrick. Years after being diagnosed with type 2 as a young adult, Patrick was diagnosed with Graves' disease (hyperactive thyroid). His physician immediately recommended taking radioactive iodine to kill the thyroid and taking thyroid supplements. This is a common approach in the U.S., but it bears risks since it requires radiation. It's also not the only option. Another is surgery to remove the thyroid, which also requires a daily pill and has the same risks as any surgery. And there's also an anti-thyroid medication that can slow down the release of the hormone, but can damage the liver or lower your white blood cell count, making you susceptible to infection. Patrick's doctor was absolutely set on the first option, radioactive iodine, saying it was clearly the best option.
But Patrick wanted to explore his options. His experience with his type 2 diabetes, in which he was able to do away with daily insulin injections through diet and exercise, made him hesitant to sign up for another daily medication. The authors explain that Patrick has encountered a doctor who has approached his own practice with his own personal preference for treatment.
"He [Patrick's physician] presented radioactive iodine as the standard or 'default' option. Research in behavioral psychology shows that most people will accept the default option; they assume that what is routine recommend is 'best'," the authors write.
What is interesting is that the radioactive treatment is NOT the default option in the rest of the world. Although two-thirds of American endocrinologists recommend radio-iodine to treat Graves' disease, only 22% of European and 11% of Japanese doctors do. Why? Because of cultural preferences, most likely caused by experiences with radiation in Hiroshima, Nagasaki and Chernobyl. Patrick's own experience with diabetes colored his belief that taking a pill everyday was not necessarily the lesser of evils.
How many of us have had our previous medical experiences color our decisions, from something as big as a surgical procedure to an additional medication to something relatively small like getting the flu shot? And how many people believe their own doctor has clear bias in his or her recommendations, perhaps discouraging the use of a new technology or medication (like Symlin when it came out) because they're not familiar with it?
This idea — and others like it — gave me a new perspective on how doctors treat both diabetes and other medical conditions. "Best practices" or "targets" are often touted in the diabetes community as the gold standard of treatment. However, many of these concepts change regularly, and, like our radioactive iodine example, change based on culture / location. Physicians in the United States likely have very different perspectives on what is "best" than physicians elsewhere in the world. In fact, the American Diabetes Association and the American Association of Clinical Endocrinologists don't even have the same targets for A1c levels. Makes it tricky to know whether or not more intensive BG management is needed!
The bottom line is that while our knowledge of the pros and cons of various treatments is important, it's also important to find a doctor who understands your preferences. Finding the "best doctor" means finding the best doctor for you: someone who will present all the information in a neutral way, but also knows how to tailor a recommendation to fit your lifestyle and comfort level. Some people are more "wait and see," while others want to jump in with both feet. At the end of the day, it's about having all the information you need, and then being empowered to tell your doctor why you're making a particular decision.
Like most books, this volume has some flaws. The most obvious to me was the fact that Groopman and Hartzband didn't address the issue of limited time with physicians. With so many people filling the knowledge gaps with anecdotes from friends, whether online or offline, a patient's conflicting beliefs can cause friction with their doctor, especially if your doctor is like Patrick's and completely sold on just one method.
If you're interested in the perspective of one of the authors, check out Groopman's interview on The Colbert Report that aired earlier this month:
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You can pick up a copy for yourself on Amazon for just over $16, or on your e-reader, or at local bookstores.
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