TERRY GROSS, host: This is FRESH AIR. I'm Terry Gross. You've probably been there, I know I have. You're prescribed a medication, and then you have to decide whether you want to look at the long list of possible side effects or if you'd rather not know.
Medical decisions are often hard to make. There are so many benefits and risks to be weighed with medications, treatments and procedures. Some people want as much information as possible. Others prefer not to know too much.
My guests think that making the right medical choice requires understanding your own comfort level and making sure your doctor understands it too. My guests, Drs. Jerome Groopman and Pamela Hartzband, have written a new book about making medical decisions called "Your Medical Mind." You may be familiar with Dr. Groopman from his medical essays in the New Yorker.
Groopman and Hartzband are on the faculty of Harvard Medical School and the staff of Beth Israel Deaconess Medical Center. Dr. Groopman is an oncologist, Dr. Hartzband an endocrinologist. They're married and have collaborated on many medical articles. Dr. Jerome Groopman, Dr. Pamela Hartzband, welcome to FRESH AIR.
You've tried to describe what some of the different approaches patients have to dealing with decision-making and to dealing with medication and what they're going to be comfortable with. Let's start with maximalists versus minimalists.
PAMELA HARTZBAND: Well, maximalists are the people who want to be very proactive, ahead of the curve, to do everything possible to prevent or treat an illness. And then on the other hand you have minimalists, and to them less is more.
GROSS: So the fewer drugs I'm taking, the better.
JEROME GROOPMAN: Well, then you have people who are more oriented towards natural approaches. We call this a naturalism orientation. And then there are people who are very oriented towards technology, and they believe that the answers are in procedures, technology, scientific, laboratory-based products.
GROSS: And you also talk about believers versus doubters.
HARTZBAND: Believers are convinced that there's a good solution for their problem, and they just want to go for it. Sometimes they are believers in technology, sometimes believers in more natural remedies, but they believe. And then the doubters are the people who are always skeptical, worrying about side effects, worried about risks, and that maybe the treatment will be worse than the disease.
GROSS: Well, let's take examples from your lives. Dr. Groopman, you were diagnosed with high cholesterol, and you had to figure out whether you wanted to take a statin drug. And you write about statin drugs and their side effects in the book and the difficulty patients have in deciding whether they want to take the drug and deal with the side effects, or at least possibly deal with the side effects, or take the risks of high cholesterol or find some alternative therapy.
So faced with that yourself, what did you do, and what was your process of thought?
GROOPMAN: Well, my starting point was two-fold. First, I was raised and until recently approached most medical decisions as a maximalist, as a believer and a maximalist.
GROSS: So to translate, you believed there was going to be a way to fix it, and you would do whatever it took and do the maximum therapy.
GROOPMAN: And more.
(SOUNDBITE OF LAUGHTER)
GROOPMAN: Exactly. So, you know...
GROSS: Give me the intervention, yeah.
GROOPMAN: Intervention, proactive, ahead of the curve, get out there and do it. And my father, at a young age, in his early 50s, had a massive heart attack and died, and he had high cholesterol. But I had reached a point in my life where I was having back pain and problems and I was concerned about side effects, much more concerned about side effects than most maximalists and believers typically are.
And I also was profoundly affected by a story. I was in the hospital parking lot, and a colleague, one of the other doctors, was hobbling from his car. And I thought, oh my God, he must have some terrible neurological disease. But it turned out he had taken a statin and developed severe muscle inflammation, which did not resolve.
So I backed off, and I took a natural approach, maximal natural approach. I lost weight. I exercised like a fiend. I cut out any foods that might increase cholesterol. I ate garlic. And it had almost no effect.
So I went to my internist and my primary care doctor, and he said here's a prescription for the statin. And I said wait a minute, why don't we try half a dose - because I had become very risk-averse, both because of my own muscle pain from my back problems and also because of this story. And it turned out within a month my cholesterol was in a very normal, healthy range.
And so that was an example of going through a process in a very different way than I had ever made a medical decision before.
GROSS: So you took a half-dose first so that you could see how your body responded to it, and maybe you'd only get half the side effects, if you had side effects.
(SOUNDBITE OF LAUGHTER)
GROOPMAN: Exactly. The side effects are dose-related. So you know, in the old days I would have jumped to the full dose or, you know, there are believers who believe you should take higher doses of statins and try to maximally reduce the cholesterol.
You know, so this is an example of two things, I think. One is that each of us is an individual in terms of our biology, our physiology and certainly in terms of our choices, and also that you have a spectrum of expert physicians who can look at the information that exists about statin treatment and cholesterol and come out with a very wide range of different recommendations looking at the same numbers.
GROSS: Now, so you opted for the half-dose. Did you up it to the full dose when you realized your body could handle the medication?
GROSS: So you stayed at the half-dose. Now, I think it's only fair that we - like it's necessary that we say you can't do this with all medications. Some medications, you have to take the full dose, period.
HARTZBAND: But actually it's a very common thing for patients to take half-dose and then come back and tell you, eventually, as a doctor, that they've done that.
GROSS: Do we need to warn people not to do that with antibiotics?
HARTZBAND: Absolutely. There are many situations where that's not a good idea. We're not recommending it.
GROSS: Okay, okay. And I think the doubters often have really good reasons to be doubters. Like, people know if they're allergic to a lot of stuff, and if they are, they're the ones likely to get the side effects. So I think a lot of people are scared to take drugs for good reason.
HARTZBAND: I agree.
GROOPMAN: If you look at information about prescriptions, about a third of all people will not fill a prescription.
HARTZBAND: I think it's even higher. I think it's half.
GROOPMAN: It's even higher in certain things, half in certain...
HARTZBAND: Half the patients either won't fill the prescription, or they stop it after a short time of being on it.
GROSS: Well, that leads to an interesting question. If you are a doubter, if you feel like you're the kind of person who's likely to get the side effects, and you worry about side effects - that leaves you somewhere between cautious and afraid when it comes to taking new medications - do you think it's wise or unwise to read all the side effects? Because everything, absolutely every drug on the market, has this like long list of possible side effects.
And it doesn't tell you how likely any of them are. You're just reading this list and feeling absolutely vulnerable to, you know, like two dozen complications, from headache to death.
HARTZBAND: You're right. I think it is very helpful to have an idea of the numbers in that situation, what things are common, what things are uncommon, and to try and put your fears into context based on that. And when you read the insert you may not be able to figure that out. You may need to ask a doctor or another medical professional to help you.
GROSS: Do you know what I sometimes do?
(SOUNDBITE OF LAUGHTER)
GROSS: I say to my husband: You read the side effects for me. If I tell you I have one of these problems, you tell me if it's on the list. Because I don't know - I feel so impressionable, like I don't want to know. I just feel like I'll imagine it's all happening.
HARTZBAND: I think that's one way to handle it. I think, you know, some people like to handle it by knowing everything, and other people say this is - you know, I know I'm just going to get a little crazy here, so don't tell me unless I have a problem. I think both are reasonable approaches.
GROSS: So how do you deal with that with your patients? Do you caution them about all the side effects? What's the difference to you between advising your patients and scaring them when it comes to new treatments?
GROOPMAN: What I try to do is to lay out the most important and common potential risks, because I want to make sure that if the patient's feeling something, that he or she tells me about it and is alert to it, so that I can intervene as early as possible to prevent it from spiraling out of control.
And again, you know, as a blood specialist and a cancer specialist, the side effects of some of the medications really are life-threatening. So when someone says, you know, I don't want to know anything, just give me the drugs, I say, well, let's backtrack a minute and see what's important for you to know because I want to make sure you're getting the best and safest care.
And you know, some of the insights, I think, that we gained from looking at ourselves, as you're doing with us now and also from talking to so many patients, is that if you show people that you want to understand their mind and you want to understand their thinking, either their fears, or in my case being a maximalist and a believer, sort of some of their impulsive decisions, that they can step back and say, okay, I know where I am now, and it makes sense for me to move a little in a different direction and to maybe learn a little about the side effects and complications, or a maximalist, no, I don't have to go to the extreme, I can back off and maybe do something in a more moderate way.
GROSS: Now, you're parents, right?
HARTZBAND: We are parents, yes.
GROSS: Okay, and Dr. Groopman, you describe yourself as having been a maximalist when it comes to treatment, although you've changed a little bit on that. And Dr. Hartzband, you describe yourself as being a minimalist. So when your child got sick, how did you reach an agreement about whether to go for the maximum or the minimum amount of intervention?
HARTZBAND: I'll describe an episode with one of our children. Our youngest child, our daughter, was ill with a fever and a cough and then became extremely ill. And I took her to the pediatrician, and the pediatrician said: I think this is a cold and maybe some asthma, and we're going to give her some inhalers, and then we'll see if she gets better, and if she doesn't get better, give us a call.
And I wasn't happy with that. I felt that she was much sicker than they thought. And I wanted to her have a chest X-ray to see if she had pneumonia and antibiotics. So as I think back on this story, I guess I was acting as somewhat of a maximalist here.
GROSS: That's what it sounds like to me.
HARTZBAND: Yup, so that I think your point of view can change depending on circumstances.
GROOPMAN: But there were also two aspects to that story. First of all, it wasn't our regular pediatrician.
GROOPMAN: It was a covering pediatrician. And what you said, as I recall, to the doctor was think about her as an individual and think about the story, that this is not just a typical cold or a typical fever. That's what she had at the start. But something's different.
And this is an example where often now some physicians feel constrained that they're following an algorithm and they're following a formula, which is that, you know, if you have a cold and a fever and you're a kid, it's usually a virus, and that's true.
But what a good doctor does is to be alert to what's different, what's not typical. And by saying something changed, something's different, she's much sicker and she had this lead-in, which was probably a virus, but now she needs a chest X-ray - and indeed she proved to have a full-blown pneumonia.
GROSS: And she wouldn't have been treated for it if you didn't push.
GROSS: So this maybe leads us to best practices.
GROOPMAN: It does.
GROSS: Describe what best practices is and why it's so in the news now.
GROOPMAN: Best practices involve a group of experts who come together and designate how they think medicine should be provided to patients with a certain condition and so on. Now, we distinguish between two dimensions or two aspects of medicine.
The first aspect is safety or emergency, so having a procedure done in the hospital so that the surgeon doesn't leave instruments in your belly, or someone comes into the emergency room in the midst of a major heart attack and should be given an aspirin.
And that kind of medicine, that kind of treatment, is very amenable to standardization and best practices because it really doesn't involve patient choice and it's not within the gray zone, generally, of medicine. But what's happened, we believe, is that many of these expert committees have overreached, and they're trying to make it one-size-fits-all and dictate that every diabetic is treated in this way, or every woman with breast cancer should be treated this way, or mammograms are only really beneficial for women older than 50 but not less than 50.
But if you step back, you see that you can have different groups of experts coming out with different best practices, and what that tells you is there is no one right answer when you move into this gray zone of medicine.
GROSS: So is best practices written into the new health care plan?
GROOPMAN: It is, and there are many advisors who want to have report cards, where physicians who might try to customize or individualize treatment and deviate from what one group says is best practices, that they will be designated as not delivering quality care and also in some cases being financially penalized.
And what we note is that in the past 10 years, time and time and time again, what was put forth as best practices to apply to everyone have been shown to be wrong or contradicted.
HARTZBAND: And for example, you can think about the estrogen question. There was a period when estrogen was being prescribed so widely, it was like it should have been in the water for post-menopausal women. It was supposed to prevent heart disease and stroke and dementia.
And the WHI trial...
GROSS: Also hoping to keep you physically younger.
HARTZBAND: Yes, that too, of course, forever young. So when the WHI trial results came out, the position reversed dramatically, and all of a sudden everyone was taken off estrogen. And now there's a move back towards looking at sub-groups that might be benefited by estrogen, different preparations of estrogen. So it's a controversy still.
GROSS: So how is best practices affecting you as doctors?
GROOPMAN: Well, it's difficult because, for example, insurance companies now are saying you must have a patient's blood sugar at this level, or you must have their cholesterol at this level.
HARTZBAND: Or a diabetic must be on a particular blood pressure medication, an ACE inhibitor.
GROOPMAN: And you know, first of all, it may not apply to every patient. There are patients like the one we describe in the book, who is a woman with a high cholesterol, where her chance of a non-fatal heart attack in the next 10 years is one in 100, that means 99 out of 100 have no problem, and she's worried about side effects, she's a doubter and a minimalist.
And she doesn't want to take the pill. Well, that then sort of pivots me not as the advocate of the patient or someone who's trying to work with her to find out what's right for her as an individual, but to pressure her to do something which she doesn't want to do and frankly she can justify.
GROSS: You mean, the best practices makes you do that.
GROOPMAN: Exactly, because they're being linked now to public reporting in terms of physician practice. They get a report card, as well as money.
HARTZBAND: So that if your patient refuses to take the medicine, you are a bad doctor, you didn't give her the proper treatment that was recommended by these best practices.
GROOPMAN: You know, one of the things we discovered in terms of best practice, there was an analysis made of 100 best practices put together by top expert committees in internal medicine. Within one year, 14 percent were contradicted, two years about a quarter...
HARTZBAND: And by five years, almost half had been overturned. So the American College of Physicians actually came out with a recommendation that all guidelines should be either updated by five years or discarded.
GROSS: So you're basically approaching medicine as the art of medicine and the science of medicine and that there's a lot of gray area in which decision-making, taking into account an individual's unique body and unique frame of mind are very important.
Best practices, I think, is designed to make sure that there's a modicum of good medicine being practiced, you know, to make sure that everybody is cognizant, all the doctors know what standard procedures are because, as you point out in the book, that's not always true.
I mean, Dr. Groopman, you write about how, when your father had his heart attack years ago, he was in a hospital where they did an outdated procedure. If there had been best practices then, and if this hospital had been following it, your father might have lived.
GROOPMAN: Absolutely. So we very strongly advocate best practices in situations where, again, you're dealing with safety or protecting the patient against complication and unnecessary infection, or in an emergency situation, where there's clear information that giving an aspirin or intervening for a heart attack - absolutely.
But what's happened, Terry, in the past few years is that the committees that have formulated best practices have overreached, and sometimes this overreaching, with one-size-fits-all, has hurt patients.
GROSS: Dr. Groopman, you've described yourself as a maximalist who has kind of pulled back a little bit because you...
GROOPMAN: In recovery.
(SOUNDBITE OF LAUGHTER)
GROSS: Yes, in recovery. Exactly. When you were a medical student, you were at UCLA for a while, and this is a period when UCLA was doing...
GROOPMAN: I was a fellow, Terry. I was, right, yeah.
GROSS: Yeah, was a fellow. Okay. Thank you. Yeah. And there were at the time doing pioneering work on bone marrow transplants. And as you've pointed out, this was a period when bone marrow transplants were still pretty experimental and it was a far riskier procedure than it is now. It's basically a procedure in which your stem cells are transplanted. Can you describe it in two sentences?
GROOPMAN: Sure. Bone marrow transplant involves taking marrow stem cells - the cells that give rise to all of the different blood cells - from a compatible donor, usually a brother or a sister, and transplanting them into you after your entire blood system has been wiped out by radiation treatment and chemotherapy treatment. So you're basically being resurrected in terms of your immune system and your entire blood-forming system, using the stem cells from a donor.
GROSS: So when you are working with this procedure back when you were a fellow at UCLA, the mortality rate I think was pretty high, because the procedure was new. It's been improved a lot since then. But how did you feel as a maximalist, as somebody who wanted, you know, the ultimate intervention for things, seeing the ultimate intervention sometimes killing people?
GROOPMAN: It is very painful, very difficult, and at times caused serious doubt and concern. You know, as you say, Donnall Thomas, who pioneered bone marrow transplant and won the Nobel Prize for it, the first 11 people who were transplanted all died within weeks. And as you indicate, you know, the treatment is so harsh that it's an unpleasant, miserable kind of therapy with a real suffering. But it required to some degree being a believer - that to eradicate leukemia, or eradicate lymphoma, these deadly diseases that occur from childhood all the way up into late adulthood - necessitated this treatment and that it was important to persevere.
And, you know, there were a whole group of people who said that Donnall Thomas was like a war criminal. You know, that how could he be doing this work. And now every year hundreds of thousands of people are saved because of that treatment. And as you say Terry, it's been refined. So, you know, medicine is not simple.
HARTZBAND: And sometimes being a believer is important...
HARTZBAND: ...for progress. Even a doubter can say that.
GROSS: One more thing. And I'm not sure you bring this up in the book, but I think the medical mind can also be subdivided into two other categories. And that is one, the people who absolutely obsess on their medical problem or their symptoms. And two, the people who say yeah, I have that. I'm ignoring it. You know, it's there. I don't pay attention.
HARTZBAND: That's a good point, a very good point.
GROOPMAN: I think, you know, being an obsessor - what a friend of mine once called psychosemitic(ph) - being a nice neurotic, Jewish guy.
(SOUNDBITE OF LAUGHTER)
GROOPMAN: And you can decide if, you know, that's a new term in psychology. That is another real divide in terms of - but to a degree I think, Terry, it moves towards the believer kind of, you know...
HARTZBAND: I agree, the believer-doubter - that the doubters tend to dismiss their symptoms because they really don't want to pursue any treatment unless they absolutely have to. And the people who are obsessing about their symptoms are more likely to be a believer. They want to do something about it.
HARTZBAND: So they're thinking about it, thinking about it, thinking about it all the time, what can they do.
GROSS: Can we just say that the worst thing is to be a believer and a doubter at the same time? In other words...
(SOUNDBITE OF LAUGHTER)
GROSS: ...to say that the worst thing is somebody who obsesses on their symptoms and then doubts...
HARTZBAND: And then is a doubter...
GROSS: ...that there's anything that they could do to do to fix it.
(SOUNDBITE OF LAUGHTER)
HARTZBAND: Absolutely. You are so right.
GROOPMAN: Right. It's much easier to have even two people like us, one a believer and the other a doubter, live with each other and be married for 32 years, then to have it in the same person.
(SOUNDBITE OF LAUGHTER)
GROSS: Okay. Well, I want to thank you so much for talking with us. Thank you, Dr. Groopman, Dr. Hartzband.
HARTZBAND: Thank you very much for having us.
GROOPMAN: It's a pleasure. Thank you.
GROSS: Doctors Jerome Groopman and Pamela Hartzband are the authors of the new book "Your Medical Mind." You can read an excerpt on our website, freshair.npr.org.
Coming up, former "Jeopardy!" champ Ken Jennings talks about his new book "Maphead." It's about weird geography and geography wonks. And we'll hear about his post-traumatic game show stress disorder. This is FRESH AIR.
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