Navigating The ‘Gray Zone’ Of Personal Medical Decisions

In new book, doctors Jerome Groopman and Pamela Hartzband encourage building up ‘health literacy.’

Advertisement

Perhaps doctor doesn’t know best. In their new book, “Your Medical Mind: How To Decide What is Right For You” (Penguin Group), husband-wife physician team Jerome Groopman and Pamela Hartzband lay the groundwork for making sound medical decisions.

None of our choices are completely independent, the authors say; rather, they are influenced by a set of values and history. Understanding what makes us tick is vital in making the correct medical decisions for ourselves.

“We’re all just flooded with information about health and conflicting advice from experts,” says Groopman, who is an oncologist and chief of experimental medicine at Boston’s Beth Israel Deaconess Medical Center, and writes on medicine and biology for The New Yorker. “We wanted to write the book to give people the framework, the tools to make the best choice for themselves.”

The authors offer four main categories that people tend to fall into when it comes to medical bias. The first is technology orientation (people who believe that the best treatments lie in cutting edge research or new procedures) versus naturalism orientation (people who feel that the body can heal itself if supplemented by herbs and other natural products). There are also the maximalists (who believe the more treatment the better) versus the minimalists (who say less is more).

Finally, there are the believers and the doubters. Believers have faith that solutions for their problem exist, whereas doubters view all treatment options with skepticism. Some of us are risk averse, while others are more prone to taking risks.

While doubters tend to be risk averse, naturalists can be maximalists (think of that friend who takes every herbal tea and vitamin known to man). The categories aren’t mutually exclusive, but it is important to understand which we fall into in order to gain more clarity and control over our decision-making.

Hartzband, an endocrinologist at Beth Israel Deaconess Medical Center and Harvard Medical School, emphasizes, “doctors as well as patients have these mindsets.” So, if a doctor is a maximalist, he or she may be prone to recommending more treatment than necessary.

In order to assess your own, and your doctor’s biases, the authors recommend that you inform yourself and build your “health literacy.”

“What does it really mean to be informed?” they write. “It means knowing the numbers about a particular medication or procedure, its likely benefits and side effects, but it also means being alert to how the presentation of these numbers can confuse or mislead you.”

In order to illustrate their point, the authors present the case of Susan, a generally healthy woman who discovered she had high cholesterol. Her doctors recommended she take a statin, a very common drug, but Susan — a minimalist and naturalist — decided to do her research first. After speaking to a friend, Susan discovered that statins could have a side effect of muscle pain. When she voiced this concern to her doctor, he emphasized that that side effect seemed relatively insignificant compared to the 30 percent reduction in risk for heart attack over the next 10 years if she were to take the drug. Susan returned to her research, went online and calculated that given her age, cholesterol number, and lifestyle, her risk for having a heart attack in the next 10 years was only 1 percent. She decided not to take the drug.

Susan’s process, the authors describe, is reflective of a few key ways to get informed. One of them, in fact the No. 1 factor influencing preference, is stories we hear of people in similar situations. The authors caution that these stories also have the potential to distort our vision “by making the rare appear routine.”

Susan learned of the potential side effects of statins from her friend, and it affected her decision. Nowadays, many of the stories we hear come from the Internet. According to Hartzband, the availability of these stories can be beneficial, but also misleading. “The Internet has lots of excellent information, and there’s also a lot of misinformation. … You have to figure out how that information applies to you and doesn’t.”

Another way to build our health literacy is to research the numbers and statistics, as mentioned earlier. The authors particularly advocate learning the “number needed to treat.” This is the number of people that need to be treated in order to cure one person. They also advocate “flipping the frame”, or seeing information in both positive and negative forms. So, if a treatment is said to have a success rate of 35 percent — a number that generally seems encouraging — it’s important to note that it is unsuccessful 65 percent of the time.

Armed with this information, the authors argue, you’ll be in a better position to make a well-informed decision.

“Anyone can do this,” says Groopman, “even someone who’s not good at it. Start with: what will happen to me if I have no treatment?”

A final component of our decision making the authors note is the “focusing illusion”: our tendency to focus on how one part in our life would be affected by a particular side effect of a treatment. In doing that, we fail to see how adaptive we can be to living without perfect health, Groopman argues.

Various models of decision making now ask people to place a value on different aspects of health: sight, sexual potency, etc. However, Groopman says that it is nearly impossible for a healthy person to really imagine what life would be like without those things, so placing a value on them is irrelevant.

For those facing these choices, Hartzband suggests finding someone similar to you, someone who is living under the conditions you are concerned about, and then trying, the best you can, to imagine yourself in the same position.

“Each of us is unique in the interplay of genetic makeup and environment. The path to maintaining or regaining health is not the same for everyone. Choices made in this gray zone are frequently not simple or obvious,” the authors write.

In their book, Hartzband and Groopman pave the way for doctors and patients alike to traverse this gray zone, and make the medical decisions they can live with.

Advertisement