(Updated) Critical medical decisions can be difficult to make — even for two Harvard doctors. But Dr. Jerome Groopman, who is also a staff writer for the New Yorker, and his wife, Dr. Pamela Hartzband, have thought a great deal about doing it correctly.
In their recent book, Your Medical Mind: How to Decide What Is Right for You, they explain that a better understanding of your own personal values and history can help you cut through the swamp of statistics and make smart decisions.
TIME: So what are the different types of medical mindsets?
P.H.: The first one would be ‘minimalist,’ and the opposite of that is ‘maximalist.’ The minimalists like to do the least possible for medical problems and the maximalist wants to be ahead of the curve and do anything and more. For me, I am minimalist and [Dr. Groopman] is a maximalist.
J.G.: Another major category, which we also differentiate is ‘believers’ and ‘doubters.’ Believers are people who believe there must be a good solution for their medical problems someplace, and they just have to find it. Doubters are very focused on side effects and on unintended consequences. They are concerned that the treatment might be worse than the problem.
[We wondered about] how does anyone come to this? I’m a believer and maximalist, and [it comes from] how I was raised. We put in the book a structure so that each reader can look at his or her own lifestyle and understand how they arrived at that mindset.
I was brought up in a traditional Jewish home where doctors were like gods. My parents looked at natural healing and folklore practices from the shtetl as being totally nonsense. Anything that was without science or technology was thought to be foolish. The development of being a maximalist in part I think came from experience. For example, my father [died] at a young age of a massive heart attack. I looked to medicine to focus on the absolute maximum to treat people — in particular, thinking about my father’s loss. In my own field, which is blood diseases and cancer, in order to try to save as many as you might, you had to go to extremes.
P.H.: In my family, there was a lot of skepticism about expert opinion. It started when I was a baby. My father, who was an engineer and very interested in science, decided that it would be a good idea to approach childrearing in a scientific way.
My mother was an artist and freethinker and she had other ideas. She thought that the experts and doctors don’t know everything. My parents have fortunately enjoyed very good health. They’re in their 80s and that reinforces a minimalist and doubter point of view. If you believe you have generally good health, you don’t want to do anything that might make matters worse.
One of the most difficult medical questions right now seems to be screening, particularly for prostate cancer. The studies suggest that men have to make a horrible choice between possibly dying of cancer or potentially becoming impotent and incontinent because of needless treatments after a false-positive result.
J.G.: [The studies haven't resolved the question. The big studies that were supposed to do so only measured deaths, not how people live.] They weren’t measuring men living their last years with prostate cancer in their bones, which as a cancer specialist, I can tell you isn’t a pleasant way to live. But [these men usually] die of heart attack or stroke, so they’re not counted as deaths from prostate cancer.
To my mind, this is a gray zone. There is no clear answer. There are two different groups that come up with recommendations. The U.S. Preventive Services Task force says no screening, and the Urological Association says everyone should be screened. The middle ground is that each individual patient and doctor makes a choice that’s right for that man. You have to be very careful. You need to really look deeply at these kinds of controversies.
Patients and doctors don’t like uncertainty. The reality is that most of medicine is in the gray zone. So to say all PSA screening is worthless is wrong and to say every single man must have it is wrong too.
Our book really engages uncertainty and it says that you as an individual can understand the information and then you can understand yourself.
Do you think it’s better to take one of these positions—like minimalist or maximalist— over the other?
J.G.: No. Take a simple thing like issue of [cholesterol-lowering] statins. The only person who can really judge the risks and benefits within the context of her or his life is the patient.
[A woman we describe in the book who had to make this decision] was a doubter and a minimalist. She decided, It’s not worth it to me to take statins if my chance of having a heart attack is 1 in 100. She really thought it through. If she has a heart attack [and survives], she’ll be disappointed but not regretful.
You also describe a woman who went against her own preferences and had surgery that was harmful to her.
P.H.: She couldn’t stand up to her doctor. [And she regretted her choice.]
J.G.: One of the big messages of the book is that doctors have their own medical minds and that’s why experts disagree when they are looking at the same information. This book empowers patients to stand up and express their own medical minds, because the language is powerful. Pam and I have been using [these terms] with our own patients to help them understand what choice is right for them.
If [the woman who had had the failed surgery] had had the language to say, ‘My mindset is that I’m a minimalist and a doubter and if I need to do something, my first choice is to do something natural, and if that doesn’t work, I’m willing to look at other options,’ [she would probably have been able to say no to the surgery]. People feel intimidated to basically come up with a different answer for themselves. This book says don’t be intimidated.
P.H.: And you can see if your point of view is very different from your doctor’s. If you have different mindsets, hopefully you can communicate and work together. The doctor has to understand so [he or she] can help to work toward a resolution of the problem that is consistent with your point of view.
How does this idea fit with the push to have evidence-based guidelines for treatment that will just tell you what to do?
P.H.: Guidelines can be extremely helpful and they represent a lot of work and gathering of information and weighing back and forth of evidence. But they’re not gospel. They’re often based on studies that don’t apply to many different people — pregnant women, for example, or older people or people with other medical problems.
J.G.: There are three key limitations of guidelines. The first is that they often don’t apply to patients in the real world. Second, they represent the medical mindset of the committee [that created the guidelines], which may not correspond to your doctor’s medical mind or yours. Third, for internal medicine, like diabetes and heart disease, [guidelines often change]. There was a study done of 100 best practices guidelines. In one year, 14% were reversed; in two years, 23%; and in five-and-a-half years, half. It’s not only because of new information, it’s because a new committee comes together, and it has different biases about risks and benefits.
When you drill this far down, you see all the uncertainties and it becomes easy to say, ‘It’s all subjective.’ By that logic, people who say vaccines cause autism can be said to have just as much of a case as those who say they don’t.
J.G.: There are certain parts of medicine that are completely amenable to strict guidelines. For example, infection control — you don’t want someone putting a catheter in your vein without washing their hands first. [In] safety and emergency care, it’s the same for everyone. But that is just one small slice of medicine.
How do you find and evaluate the information to make these decisions?
J.G.: The first question every patient should ask is, ‘What is my chance of having a certain outcome with no treatment?’ [In the case of statins, for example, a heart attack.] That gives the sense of, for you as an individual, what are you facing? It clears away the confusing clutter of statistics. Either your doctor can provide the information, or there are [risk] calculators at government or other well-respected websites. [You need to find out] what is my risk for something if I do nothing, and then you can really assess the positive impact and negative potential complications of the treatment.
P.H.: And when you’re looking at these numbers, you want to be careful how the numbers are framed because that can be very confusing, too. In the case of the woman with elevated cholesterol, she’s told her risk of heart attack would be reduced by 30% by taking a statin. Even as a minimalist and a doubter, that sounds like a big number because your mind plays tricks on you. It sounds like you’re at 100% risk and now it’s reduced by 30%. But it’s not. Her risk from doing nothing is 1 in 100.
Or, for example, with bisphosphonates for osteoporosis, they will reduce the risk for fracture by 50%. What’s your risk if you don’t take them? If it’s 2% and it goes to 1%, you still might want to take them, but at least you understand what that really means for you.
The next thing to do is, once you’ve looked at the numbers framed in a certain way, then you want to flip the frame and experience it the other way. When you talk about side effects of statins, it depends on the dose and which one you take. It varies between 1% and 10%. Ten percent sounds like a lot, but if you say 90% don’t have side effects, that sounds a lot better.
J.G.: I think you as journalist and we as doctors and writers have a real responsibility to communicate with people in an understandable way. People make life and death decisions based on their interpretations of this information and it’s very easy to be misled. A lot of this book is about how not to be misled.
Update [Oct. 31]: Due to transcription errors, the original version of this post mistakenly substituted the word community for committee in one passage, and anything for everything in another.