2012 Bishop Lecture featuring Jerome Groopman, MD, and Pamela Hartzband, MD

dr. Susan Gould from internal medicine and the Center for Bioethics and social sciences in medicine is going to introduce our speakers and we’ll also introduce several of the bishop family members who are joining us today so I would like to turn it over to Susan Gould well actually before I introduce our speakers or ever Christine Bishop one of the at least three or four members of the bishop family here today I don’t know if I’ve seen all of them we’d like to say a few words about the family I just like to say a very brief message from all of our family how very pleased we are about how my parents generosity has been carried out by you folks here with this wonderful lecture which seems to add a little extra spark to a wonderful day we’re just fascinated by these different talks today so on behalf of my brother David who is here my brother Andrew my sister Ellen we’re just delighted with all of this and my my dad’s little sister aunt Jane is here also and some of his some of my parents colleagues the choice today is just wonderful as an economist I always have tried to bring to health care the idea of the informed consumer and dr groopman and his his work have really brought that together my father always was an advocate for patients and their informed decisions but I think what I wanted to say most of all was my mother was a New York girl and she came out here to the wilds of Michigan and brought up four kids and probably felt a little isolated and out in the country and out in the Midwest and about once a month her parents back in Brooklyn bundled together their copies of the New Yorker and sent it to her was back in the 50s before the New Yorker was a nationwide magazine so I think what would thrill her most of all was to someone who writes so beautifully for The New Yorker giving the bishop lecture Thank You Christine that was just wonderful the personal touch is great I want to welcome everyone to the Ronald see Nancy V Bishop lecture in bioethics and a special welcome to the many family and friends of the bishops who are here i’m susan gould as as he said and i had the distinct honor and pleasure of knowing Ronald bishop who attended a monthly discussion seminar that I led when I first got here many moons ago and he and his wife Nancy both graduated from the University of Michigan Medical School by the way in 1944 they married a year later and raised four children in the area Ron joined the faculty and I think it was 51 and roommate here until his retirement so this lecture series results from the generosity of the bishops of Ronald Nancy but also their their children and I am delighted to welcome a pair of speakers a pair of wonderful speakers this year Jerome groopman at Grubin and Pamela Hartsburg and they are co-authors of your medical mind which I highly recommend and was in fact on the break recommending a particular chapter to someone who was talking about end-of-life decision making stuff so I very much enjoyed your your chapter in that way in that in that area especially so dr. groopman is professor of medicine at Harvard he earned his bachelor’s from Columbia College and then graduated from Columbia College of Physicians in surgeon as a valedictorian he completed internship and a medical residency at Massachusetts General Hospital a fellowship in hematology oncology at UCLA and a research fellowship then at Boston Children’s in Sidney Farber Cancer Center his awards are as they say in pathology too numerous to count but here are a few highlights he won the best wellness book in 1997 and 2004 and 2007 the American Medical Writers Association presented him with an award for excellence of medical

communication in 1998 then presented him with a John McGovern medal for preeminent contributions to medical communications in 2003 in 2008 9 he was named a Knowles scholar at Harvard for recognition of his undergraduate teaching it’s got even more publications and many many books and you know this is the part where you wave around the book which the Kindle has changed all that I’m gonna wave around my Kindle if you want to see the titles I can show you later but the other thing about his – publications is the very notable for their variety for instance one recent publication I’m gonna try with this one in the British Journal of pharmacology endocannabinoid like an Iraqi Donal serine is a novel pro angiogenic mediator this is not the topic of the talk today easier to pronounce a recent piece in the New England Journal the new language of Medicine which was written with co-author Carter there so dr Hartman’s career has taken her to many of the same places with some overlapping directions she earned her bachelor’s magna laude from Harvard graduated from Harvard Medical School completed internship and one-year medical residency at Mass General and then finished her residency at UCLA after a stint as chief medical resident in Massachusetts she completed a fellowship in endocrinology at UCLA again she’s currently an assistant professor of medicine at Harvard a fellow of the American College of Physicians and a member of the council medical societies patient-centered medical home working group topic these days and when unsure benefits a great deal from her insights she has a profound teaching record pages and pages of residents fellows and students who she has mentored over the years and has had leadership roles in medical curricula both of them received the humanism and medicine award from the Arnold gold foundation last year I know there’s much wisdom we can learn from these two and I welcome them today to present when experts disagree the art of medical decision making well we’d like to thank the Center for Bioethics and social sciences in medicine and the bishop family for inviting us here to talk about medical decision making and we’re especially honored to present the what I understand is the second annual Bishop lecture and bioethics so we’re gonna plan to talk for about 45 minutes and then we’d like to take your questions and comments we’re really interested in hearing from from all of you as doctors Jerry and I spend a lot of time working to stay up to date on the latest developments in medicine and in particular to sort through the controversies where the experts disagree about testing and treatment and today we hope to convince you that when you understand why the experts disagree that you’ll be able to make better medical decisions this is our disclosure statement as you heard we’re the co-authors of your medical mind how to decide what is right for you so in recent years there’s been a shift it’s not just medical professionals who are struggling with these issues all of us are now directly confronted with medical information and advice through the media you can’t pick up a magazine or a newspaper turn on the television or the radio and certainly you can’t go on the internet without getting medical advice and because of this patients are increasingly aware of the existence of controversies in medicine the areas where the experts disagree so I’m going to show you some examples in the next few slides and this first slide I I took this picture with my brand new iPhone it’s from the Wall Street Journal in January and it highlights the controversy about whether otherwise healthy people with elevated cholesterol should be treated with statins as a prevention for heart disease so on the lot on the left you see yes they save lives and on the right no high cost little gain another controversy that’s been in the recently centers on vitamin D should everyone be taking vitamin D and if so how much what’s the normal level of vitamin D and should we even be measuring levels so this this slide shows the headlines from November 30th

which was when the Institute of Medicine issued their report on vitamin D and you can see that the headlines are conflicting on the left in New York Times reads the report and says extra vitamin D not necessary and on the other side The Wall Street Journal says triple your vitamin D intake so this certainly added to the confusion I’m sure you’re all well aware of the controversies about mammography and cancer screening for men for prostate cancer so this slide is from a piece of the New York Times in October where at the bottom you can see it says has the power of the mammogram been oversold questioning exactly what age a woman should begin to have a mammogram and how often mammograms should be done should a healthy man have PSA screening and if prostate cancer is diagnosed how should he be treated so this is from the PBS news hour again in October it was a special broadcast highlighting the debate about PSA screening and treatment of prostate cancer so every one of these issues and many more remain an active controversy debated both in the medical literature and also in the lay press so with this flood of information the public has become acutely aware that experts disagree so how does a patient make a decision in the face of all this controversy and conflicting advice we didn’t have a ready answer so we began to search so first we went back to the textbooks and we looked at classic medical decision analysis which is drawn from economics and a formula is used to calculate the quote best decision and this formula was derived by Daniel Bernoulli who is a mathematician in the 1700s and Bernoulli was looking at decision making in the marketplace and he said that the best choice is calculated by looking at the probability of a certain outcome and then multiplying it by the utility or the impact that that outcome has now in economics the probability of an outcome might mean the chance of achieving a certain market share or selling a certain number of products and the utility is basically the profit in dollars and more specifically the impact on the bottom line and this formula underlies much of economic decision analysis now it has been imported into medicine and when applied to medicine you can estimate the probability of an outcome for example in considering treatment of prostate cancer you can look at the probability of the outcome of a side effect such as incontinence or impotence after surgery but then the question becomes how do you put a number on the second part of the equation the utility the impact it has on your life now there are three different methods that have been used in classic medical decision analysis and the first is a linear rating scale from 0 to 1 where 0 is death and 1 is quote perfect health and you’re supposed to look at the scale and say well if I had urinary incontinence or if I were sexually impotent my life would be at this point on the scale between 0 & 1 another method is called the time trade-off and this is how many years of your life would you be willing to trade off or give up in order to avoid incontinence or impotence and the third comes from game theory and it’s called the standard gamble and here you’re asked to imagine that there’s a magic pill and this magic pill can completely prevent a certain outcome such as incontinence or impotence but in a certain percentage of cases it causes instant death and you’re supposed to estimate what odds you would be willing to take to completely avoid a certain outcome versus the chance that it might kill you right off the bat now recent research and cognitive psychology has shown that all three of these methods are severely flawed the problem is you can’t reliably forecast your life in the future you can’t accurately understand the impact that a certain outcome will have if you’ve never experienced it also as you know medical conditions are not

static they’re dynamic and people adapt so the impact that a condition is having on your life changes over time despite this these three methods are very well established and broadly used in deciding what is best in medicine they are used in calculating so-called qualies quality adjusted life years they are the underpinnings of government priorities in the United Kingdom through the National Institute of comparative effectiveness nice where they asked three thousand healthy British citizens how much time would you trade-off for example to avoid incontinence or impotence or any other medical condition and in the United States they are used by policy analysts and insurance companies and recently they were proposed in an article in the annals of internal medicine to be the basis for cost-effectiveness priorities in the United States as part of healthcare reform now what happens when you ask people who actually have the medical condition and it turns out that self-reported quality of life from patients is very different from what we imagine as their quality of life for example I have for example in Britain they’ll ask healthy citizens if you were blind what would be the impact on your life and on the linear scale it comes out to 0.5 it reduces the utility of your life by 50% now I happen to have a first cousin who’s been blind since birth she was born prematurely she was exposed to oxygen in those days she worked her whole life as a teacher for the blind she speaks four languages she’s currently retired she’s active in her synagogue she volunteers in an assisted living facility where she helps sight impaired elderly people access the computer using Braille keyboards if you told my first cousin that the quality that the that her life was a 0.5 on a scale of 0 to 1 she would slug you now similarly men diagnosed with prostate cancer if you look at a group that chooses so-called active surveillance watchful waiting no intervention no surgery no radiation versus a group that has prostatectomy that has surgery and then has a very high rate of incontinence and impotence both groups report the quality of their life at the same level so in fact when you speak to people who actually have a certain medical condition their assessment of their own life is very very different from what people who are healthy or have never experienced the condition believe so this entire structure of decision-making is deeply flawed and in fact Daniel Kahneman the Nobel laureate in economics who’s a cognitive scientist recently gave an address to an Internet a meeting of medical decision analysis and he said this paradigm of measuring utility is like measuring the ether in 19th century physics when the ether did not exist so we realized the textbooks were not giving us the answers that we were looking for and then we thought about William Osler one of the most famous physicians of all times who practice in the late 1800s and early 1900s and he was famous for many things but among them a very famous comment about how to make a very difficult medical diagnosis and he said listen to the patient because if you know how to listen he’s telling you the answer so we decided to listen to patients we interviewed scores of patients in great depth patients of different ages different parts of the country different socioeconomic backgrounds and different kinds of medical problems and we asked them how they made their medical decisions and although we found that patients were individual and how they made their choices they there were common threads that they took in their approaches to their health and their medical problems and to explain these common threads we’d like to involve all of you right now in a thought experiment so we’ll begin just by asking you a few

questions I’d like you to raise your hand if you’ve been a patient yourself over the past year and by patient I mean obviously a visit to the hospital or the emergency room but even just a checkup or a minor issue where you saw a doctor in an office to raise your hand pretty much everybody okay so now try to remember that experience of being a patient put yourself into the mindset of being a patient and now imagine that you are sitting in your doctor’s office and your doctor tells you that your blood pressure is too high and that you’ve already tried exercising you’ve changed your diet you cut out salt you lost weight and still your blood pressure is too high and your doctor says okay now we need to begin med ocation so raise your hand if you want to be proactive you want to aim for perfect blood-pressure control and you’ll do whatever it takes to get that okay now raise your hand if you feel that your blood pressure doesn’t have to be absolutely perfect you just want the minimum amount of medication so the term we apply to the first group you’re the maximalists you want to be ahead of the curve do everything and more the second group you’re the minimalist less is more okay so your doctor prescribes a blood pressure medication it turns out the medication comes in two forms one is extracted from an herb a natural source the other is made in a laboratory using the latest technology both are chemically identical and cost the same your doctor offers you a choice raise your hand if you would prefer a medication drive from a natural source okay raise your hand if you prefer medication made in a laboratory using the latest technology okay now people who raise their hand first have what’s called a naturalism orientation when they’re initially considering a therapy they look to a natural source whether it be supplements herbs acupuncture massage for a problem that may potentially be amenable to that and about 60% of the United States has a naturalism orientation in surveys the second group has what we call a technology orientation these are people who look to the latest greatest high-tech breakthrough the cutting edge treatments so now your doctor gives you a prescription for the medication that you chose and you fill the prescription and now you’re just about to take the first pill so raise your hand if you swallow it down Siddhant that you’re on the right path to solving your problem of high blood pressure now raise your hand if you take the pill out of the bottle stare at it for a while read the side effects a few more times and then wonder if you should really take it so the first group you’re the believers you’re certain there’s a good solution for your problem and when you find it you’ll go for it the doubters worried that the treatment will be worse than the disease so the terms for these mindsets are what came these are the common threads that came out of the interviews that we did with patients and these mindsets applied not only to problems like high blood pressure or high cholesterol but also to decisions around surgery and treatment of very serious illness like cancer so one of the first patients we spoke with is a woman we call Susan Powell all the people we talk about are real but we changed their names for confidentiality and Susan is in her 40s she lives in Boston she works as a nurse’s assistant and on a routine checkup with her primary care doctor she was found to have an elevated cholesterol level of 240 and this was confirmed and the normal cutoff is now 200 now Susan’s an active person she walks regularly follows a healthy diet is not a smoker doesn’t have hypertension or diabetes and her doctor said to her Susan you need treatment for your high cholesterol you need a statin medication this will decrease your risk of a heart attack by 30% now that made an impression on Susan she said she think about it but she did not immediately fill the prescription and over the course of a few months she sought more information about elevated cholesterol and it’s therapy and while

surfing the internet she came upon a government website that has what’s called a risk calculator and here you put your individual characteristic in in her case her cholesterol level her age or gender the fact she’s not a smoker doesn’t have hypertension and so on and the risk calculator answers a key question that every patient should ask himself or herself regardless of their condition and that is what is the risk of a certain outcome without any treatment now for a woman like Susan in her 40s with a cholesterol level of 240 and no other risk factors the chance that she would have a non fatal a non-fatal heart attack in the ensuing 10 years is one in a hundred one percent even if she were in her 50s and her cholesterol had risen to 280 her risk of a non-fatal heart attack in the next ten years would be two percent two and a hundred so you see how your mind plays a trick on you when you hear that a statin medication will reduce your risk of a heart attack by 30 percent it sounds as though you are at 100% risk for a heart attack but in Susan’s case it’s actually 30 percent of one percent or if she were in her 50s with the cholesterol that was even higher of 280 it would be 30 percent of two percent which clearly has a very different impact in terms of thinking than what she had originally heard now we spoke with some patients like a woman we call Michelle Byrd who is a maximalist and a believer and Michelle told us that she would immediately take a statin medication because she said I could be that one in a hundred who would have the heart attack over the next 10 years I’m taking the drug but Susan was a minimalist and a doubter and was not convinced by these numbers but there’s more to Susan’s story than numbers shortly after she was given the step she went to a church dinner and there she met an acquaintance who was hobbling around an obvious pain and looking very ill and it turned out that this woman had been prescribed the very same statin medication that had been prescribed for Susan and she had had a side effect the most common side effect myopathy or muscle pain so as you know stories like this have powerful effects on all of us cognitive scientists called the effect of stories availability because the powerful story stays in your mind and is readily available these kinds of stories leave patients indeed all of us to overestimate the likelihood or probability of the similar event happening to us so all those stories can sometimes be helpful they can also be misleading making something rare appear common now when you hear a story like this you need to go back to the numbers how common is this side-effect of myopathy while taking a statin well it turns out that the number ranges from as low as 1% to as high as about 10% depending on the type of statin the dose other medications that you might be taking and other medical problems so 10% that might sound like a pretty high number but now let’s present or frame the information in the opposite way between 90 and 99 percent of patients will not have this side effect so this sounds a lot better although the information is just the same so when you’re trying to make a decision or helping a patient make a decision it’s important to flip the frame and present or consider the information in both the positive and the negative you might think that framing is primarily a problem for patients but a recent Swiss study showed that physicians are just as susceptible to framing as patients are so how do patients get numbers and other information about medical treatments well one way is through drug advertisements and it turns out that if you watch the evening news at about two hours of primetime television you will see in excess of a thousand drug advertisements over the course of a year which works out to about 16 hours and that’s a lot more time than most people spend with their doctors and these ads are effective for every thousand dollars that’s spent 24 new prescriptions are written now drug ads are carefully constructed to use both the power of numbers and the power

of stories to sell the product so let’s look at how it’s done numbers are framed in the most positive way for example for a statin the ad might say that there’s a 30% decrease in the risk of heart attack but obviously it’s not going to say it’s 30% of 1% or 2% as Jerry just discussed so now let’s look at an ad for a new medication that was recently approved to treat patients with atrial fibrillation the medication is dabigatran and it’s sold under the trade name of Pradaxa and you may have seen these ads they’re pretty much everywhere right now and this ad we took off in in tonight internet site which was meant for patients and the ad uses numbers very effectively shows a doctor a cardiologist who’s presenting the information to the patient and he gets your attention immediately by stating that if you have atrial fibrillation you are five times more likely to have a stroke five times now that sounds very threatening and I think clearly implies that you need to be treated so what are the real numbers what’s the baseline risk for stroke for atrial fibrillation if you’re not treated well the doctors in the audience here know that that depends on what’s called a Chad score whether or not you have other medical conditions like heart failure high blood pressure diabetes your age and whether or not you’ve had a stroke or a TI a B 4 and the number of areas between 0.5% at the lower end up to about 6% per year at the upper end for ambulatory patients so 0.5 to 6% these are much less impressive sounding numbers than five times increased risk of stroke and now let’s frame the numbers in the opposite way so between 94 and 99 and a half percent of patients will not have a stroke each year despite having untreated atrial fibrillation now the excuse me the ad goes on to say that the risk for stroke associated with atrial fibrillation is decreased by 35% more with this new treatment than with the traditional treatment warfarin and this sounds very impressive too but again what are the actual numbers so in the real I trial which was the trial used to approve this drug the risk of a stroke was 1.7 percent per year with warfarin and 1.1 percent with the bigoted Ron the new treatment a difference of 0.6% so although the relative decrease was 35% the actual decrease was 0.6% six tenths of a percent the information is the same but presented in a different way and I think you’ll all agree that if we reconfigured this advertisement to say that it was 0.6 percent better the new medicine I think you’d be a lot less impressed than 35 percent so it’s really important to be alert and careful when hearing relative numbers rather than absolute numbers it turns out when patients hear the kind of information that’s presented in drug advertisements a study from Dartmouth showed that they generally think that the medication is 10 times more effective than it really is now we’ve talked about numbers how about the stories so if you’ve seen these Pradaxa ads they’re on television all the time and one of them that caught our attention was one where a grandfather and a father and a son are all going off to fish the grandfather is going to teach the grandson to fish on this lovely summer day and the clear message is that the grandfather has made it in good health to this happy day because he’s been taking this medication and so the advertisers know that the story is powerful so they keep the story going and now the the rest of the family arrives everyone’s hugging and kissing the Sun is sparkling on the on the water and that’s when the voiceover gives you the side-effects serious bleeding death and they don’t mention that there’s currently no way to reverse the anticoagulation effect of this new medication if bleeding does occur and they don’t comment on the possible increased risk of heart attack with the new medication as well so experts are another source of information for patients and this is insurance companies have been advertising saying that they have the experts and you may have seen this ad from United Healthcare which is a nationwide huge insurance company and it tells the story of a woman who needs

knee surgery she’s an active runner very healthy and so on and had a knee operation the past and now she has more knee pain and needs and operation and the insurer uses the mantra health in numbers and says that it has the experts who look at the numbers and generate report cards on doctors specifically surgeons and it promises the patient the following you will know you get the right doctor you will know you’ll get the right procedure and you will have the right outcome now this is a false promise I’m I can tell you from my back surgery it is a false promise alright the guy said you’ll be playing football in two months I said never played football it’s impossible to promise anyone with any particular treatment whether it be surgery or medication or whatever that they will have the right outcome meaning absolute benefit with no complications or risk now patients also receive guidance from so-called expert committees and as Pam said at the beginning of the talk patients have become aware of the controversies and that there are different expert opinions for example cancer screening two years ago there was a major controversy over mammograms that continues to this date and in a recent review in the New England Journal of Medicine looking at the recommendations and the data for different expert committees come out with four different recommendations with regard to when should a woman begin to have a mammogram what age and how often the controversy of a PSA screening pivots on two randomized control trials also in the New England Journal in 2009 now there was a trial in the United States and the American trial had a PSA screen group and a control group now you would imagine that the control group would not have PSA screening but it turns out that in the American study the controls were assigned to quote usual care and more than half of the men in the control group had PSA screening so the American study showed no benefit in terms of reducing mortality looking at this PSA screen group versus the control group now a large multicenter study in Europe did show a benefit but it also was significantly flawed in that there was no uniform cutoff for PSA about when to biopsy from centre to centre within the European consortium and there was no agreement about how often to do PSA testing over the course of the trial now an independent group in Guttenberg Sweden did a very rigorous trial we’re half the men had PSA screening was about 12,000 men the other half 97% did not get screened and there was a very significant reduction in mortality a 50% relative risk reduction but in terms of absolute it meant that for every 12 men who were diagnosed and treated for prostate cancer one life was saved which in cancer treatment is actually a pretty high number so you have three different expert committees you have a government panel the United States Preventive Services Task Force the American Cancer Society and the American neurological Association and each one came up with a different opinion based on these studies ranging from no screening at all for healthy men for the government panel to an individual decision made between doctor and patient for the American Cancer Society to recommending screening from the American logical Association with shared decision-making three different committees three different opinions so now we want to get a little personal and talk about our own medical minds or mindsets and Jerry you go first okay so I was raised in a family with a strong Eastern European Jewish tradition where doctors were on a pedestal physicians like Jonas Salk and Albert Sabin were heroes for their work with polio and honored in the same way that Franklin Roosevelt and Winston Churchill were and defeating the Nazis science and technology were greatly honored as well and anything that was thought to be natural was seen

as a throwback to ignorant village life in Eastern Europe so I was clearly raised as a believer with a very strong technology orientation and being a believer meant doing everything to the maximum in those days in my family the attitude was every medication every pill every intervention had to mean better health and my father in his early 50s had a of heart attack and died now he may have died because he did not get intensive cutting-edge treatment and possibly could have survived if he had he may not have but he did not get intensive therapy so this reinforced my belief in intensive interventions and that maximalist mindset extended not only to heart disease but basically to all of medicine so in the early 1970s in my medical training when I decided to become a hematologist and an oncologist bone marrow transplant was coming to the fore and at UCLA there were patients with otherwise fatal leukemia who now through this most intensive therapy could be saved with a transplant so this again cemented my mind as a believer with a maximalist and technology orientation and I had a different kind of upbringing I was the first child in my family and when I was a baby the doctor told my parents that the new scientific way to feed a baby was to feed every four hours by the clock so my dad who was an engineer was very enthusiastic about applying scientific principles to child rearing and he made a chart for my mother every four hours so she could check off when she fed the baby and then he went to work and my mother a saw an artist and freethinker did not have a very good day hearing a lot of screaming and finally took matters into her own hand and tried to feed me when she thought I was hungry when my dad came home he said to her how can you not follow the advice of the doctors the experts and her response was doctors don’t know everything my parents were ahead of the time with respect to a healthy lifestyle they never smoked they were avid exercises my dad woke us my sisters and I up early every morning to do the Royal Canadian Air Force exercises with him and my mother had us eating whole-wheat bread which in the 50s was not a very tasty item and we weren’t allowed to have soda or candy and my parents have had the good fortune by virtue of genetics and their and/or their lifestyle to live long and healthy lives with a minimum of medical intervention my dad’s 88 he still goes to the gym and worked out for an hour every day runs every day and my mom is an avid golfer and this background has contributed to my minimalist outer orientation so Jerry’s a maximalist and a believer and I’m a minimalist and a doubter and we maintain these mindsets about our own health despite going to very similar medical schools and training at the very same Hospital in Boston so why are we telling you this we’re pointing it out to show you that doctors and experts have medical Minds or medical mindsets too and this can impact the advice that they give so how might this play out in a clinical setting well it turns out and I probably don’t need to tell this audience that there are many parts of Medicine that fall into a grey zone where there’s not a clear right answer for everyone and I’ll give you an example from my own practice as an endocrinologist I frequently see patients with thyroid nodules lumps in their thyroid now the vast majority of these are benign but a few turn out to be malignant so to evaluate these we do needle biopsies sometimes even after several biopsies we can’t get enough cells to get a definite answer and then we need to decide if the patient should have surgery to take it out or not so recently I saw a patient in just this kind of situation three biopsies were done and there were not enough cells to make a definite diagnosis the ultrasound showed no particularly worrisome findings and the risk of malignancy in this setting is somewhere between two and 12 percent so the patient said to me what would you do what would I do so that’s the question we get all the time as doctors what would you do would you do for your mother what would you do for your sister so I said if it

were me I’d watch and wait but if it were my husband Jerry he would have had surgery yesterday different medical mindsets so we’re not suggesting that the doctor and the patient need to have the same medical mindset but sometimes sometimes being challenged can help you to make a better decision but the doctor needs to understand and respect the patient’s mind and the patient needs to be aware that the doctor also has a mindset so now let’s return to the subject of the experts and why they disagree we believe that they disagree because there are different mindsets so with regard to PSA screening Jerry just talked about this the United States Preventive Services Task Force who recommended no screening for healthy men that represents the minimalist outer point of view less is more and this has become an increasingly popular point of view with the rising cost of health care the American urologic Association that represents the maximalist believer point of view and the American Cancer Society they fall in the middle none of the recommendations are strictly objective everyone’s looking at the very same data but they value the information differently due to different mindsets now some of the most difficult decisions are made regarding end-of-life care and many people believe that advanced directives just take care of everything but studies show that 50% or more of people change their minds they choose differently when they’re sick compared to what they wrote in their living will or advanced directive when they were healthy sitting in their attorney’s office and this again is because you cannot forecast how you will think how you will weigh risk and benefit in the future under circumstances that you’ve not yet experienced furthermore advanced directives cannot encompass every possible scenario for example a person may say I don’t want to be placed on a ventilator after receiving a diagnosis of lung cancer but let’s say that that man develops pneumonia and he needs to be on a ventilator for just a few days as the antibiotic treatment takes effect and then he could live one to two years should he not go on the ventilator now this is also linked to the issue of what is futile when does it no longer make sense to give treatment from a clinical point of view and experts have tried to develop formulas to calculate what is futile and actually Ralph Stern sent us a paper in advance of our visit which echoes this and it turns out that these family formulas have all failed because in the real world of patient care you cannot identify that individual who will survive and go on and live and in the studies that have tested these formulas the individuals who go on and live often live very good quality of lives of life for very long periods of time and then surrogates now surrogates are often called upon to make difficult decisions because the person the people the the patient is not capable of thinking and choosing for himself or herself now this is one of the most challenging and complex scenarios that we face in terms of both ethics and and decision making and there is no glib or easy answer but we believe that it can be very helpful to go back to the mindset that we proposed and that is to consider whether the patient who is incapacitated Buzzz a maximalist or minimalist a believer or a doubter had a naturalism or a technology orientation and then the surrogate can use that knowledge to try to inform a choice on behalf of the loved one or other person now let’s return to how can a patient as an individual make a decision when the experts disagree we think it’s essential to assess three dimensions and they’re shown here first is the patient’s medical mind or mindset believe your dad or a maximalist minimalist technology or naturalism orientation that’s simply the starting point that’s the beginning then you look at the numbers and try as best as you can to see how the numbers apply

or do not apply to that individual and finally stories now in terms of evidence-based medicine scientific thinking we often dismiss stories as mere anecdotes but it turns out that research done by Daniel Gilbert who’s a psychologist at Harvard and others published in the journal Science which is a pretty good journal in terms of how to better estimate the impact of a certain outcome on your life that second part of the Bernoulli equation the utility is best done by talking to someone interacting with someone who has had the outcome particularly someone who is similar to you in background and then you try to get your arms around his or her own experience with a certain condition and and it’s of course good to talk to more than one person one who has had a good outcome and one is that a bad outcome but who are similar to you in sensibility and in fact we learned from our research speaking with patients that it was enormous ly helpful for several men we interviewed who were struggling after receiving the diagnosis of early stage prostate cancer and choosing among active surveillance watchful waiting no intervention versus surgery versus radiation it was very valuable to that to get a concrete palpable sense of what life might be like in the future by speaking to other men who had made one of those choices and we believe that when a patient knows his or her medical mind they can communicate this to their doctor using the terms we set out today explaining how and why they weigh risk and benefit in a certain way and then the doctor can explain his or her own medical mind to the patient and then together understanding each other’s mindsets hopefully arrive at the decision that is best for that individual thank you I beg your pardon I’m certain everyone enjoyed and learned a great deal and certainly I did I’d like to ask you what I tried to make a brief question but it’s complicated if we cite a paper in our commentary in nature that of the 50 most important preclinical discoveries of the past decade only 10% could in fact be repeated in another laboratory or if we cited the American Society of Clinical Oncology x’ argument of what was the 50 most important clinical findings in the year 2011 and then we discover that the evidence that supports that was only a fraction as published manuscripts okay and the vast majority was an abstract happened to be presented in ESCO or an FDA announcement about approval of the drug my question to you is how much do we as a profession contribute to the difficulties for patients and for ourselves by not defining what evidence is sufficient I’ll just add to that I begin by adding to that to say that in terms of guidelines medical guidelines that 14% are overturned within one year 23% at two years and by five years almost half so not only does the evidence change but also the interpretation and value how people value the particular evidence changes to for example the composition of a committee will change and all of a sudden the recommendation is overturned so it’s a complex interplay in terms of making guidelines of both evidence and then valuing the evidence I agree first that I think is the you know is the coda to your to your question but I think that we as a profession have a tremendous responsibility to publish and present when studies that

are done in good faith turn out not to be even the issue replicated but have the impact that was initially intended for example my laboratory collaborating with Genentech in San Francisco and David Howe who’s at the Rockefeller now collaborating with Biogen looked at the cd4 structure on the surface of t-cells this is a protein on the surface of Jesus it looks it seemed to be in tissue culture the receptor the binding the docking site for HIV to science papers to nature papers from our lab similar with him front of the New York Times all of this time then a therapeutic was made which targeted a soluble receptor which targeted HIV to be a decoy and bind to the virus complete failure total failure why because it turns out that the tissue culture conditions of cell lines and the way viruses were selected generated artifacts and there are more than one docking sites in fact there are several docking sites on the surface of target cells for HIV and David published and we published the fact that we failed and it’s not a pleasant or comfortable thing to do especially when your mother called you up and said you’re in the front of the New York Times that was the most difficult but I think that we’re wrong sometimes and it’s done in good faith and it’s because often the limitations of the systems and so on but it is a real issue and this also actually bothers us to a degree just to you know I saw like an angry statement from a policy planner in Washington who said you know it takes 15 years for evidence to be implemented in daily clinical practice and and that’s an outrage that shows you how terrible the medical system is and I thought exactly what you just said which is 90% this stuff doesn’t get either replicated or it turns out it’s nuanced or the presentation today that evidence doesn’t apply to the individual I really enjoyed your presentation today and I think a lot about medical decision making and I wonder do you think that a maximalist stays a maximalist because I’m one of those people who would do the blood pressure medication and the cholesterol but I always tell everyone that if I had stage 4 cancer I would go to Hawaii like I would not want certain treatments that other people may want so do you think that it is stable throughout people’s lives or is it sort of unclear at this point so I think that it is not stable throughout people’s lives a very good point that it’s a starting point it’s your initial reaction to things but then you definitely can change based on experience you might be a maximalist we actually refer to Jeri as a maximalist in recovery because of his back that he’s moved a bit away from being a maximalist because of a bad result of you know proceeding as a maximalist and the same for the minimalist you may decide to not take a treatment have a bad result and maybe change so I think people do change and they can change also based on the nature of the problem it’s interesting that you talked about being a maximalist for what would be considered a relatively less urgent or serious issue and a minimalist for us a more serious problem and typically we we think of it the other way that you would start as a minimalist and and change to be a maximalist so all things are possible and people move along the spectrum very frequently well one of the just briefly one of the we haven’t a chapter about end of life in the advanced directive some decision-making and we profile two patients one is a woman a very devout Irish Catholic believer who had cancer and had an outstanding and unexpected mission and she said I would never you know be treated again I do not want to go on a ventilator I don’t want intensive therapies and then to the absolute shock of her family when she had a recurrence eight years later of a cholangiocarcinoma which is very rare

and she said I want everything and why because she had found gratification in life from things which seemed mundane so heard a lot of she loved blueberry muffins her daughter would give her a blueberry muffin and she reached her grandchild and she wanted to live and so you know Daniel Kahneman actually did a study of your example not in Michigan but in Minnesota of people who said you know I I be everything would be great if I just moved to Southern California because the weather would be beautiful and I’d see the waves and it’s called the focusing illusion because he looked at the people who stayed in Minneapolis and the ones who went to California and they had the same level of happiness because you bring yourself wherever you go so I wanted oh I’m sorry I want to thank you both for an excellent presentation and just want to say it certainly echoes and resonates a lot with the work we do in genetics so we’re in counseling we kind of get both sides of a risk we might say you know someone has a 1% risk that this can happen that means there’s a 99% chance it won’t happen and that’s a very central part of our training and as I was listening to you though I was wondering if there’s been because I the whole issue of maximalist Mentalist believer doubter I mean this would be an excellent screening tool to have before we even meet with the patient and I was wondering there’s any efforts just to have patient you know to develop something to have patients to fill out in the waiting room it could be very simple because I think it could be very helpful in how you actually approach your interaction with the patient well I think that we’ve actually been invited to give talks like this one and enjoy the from the audience and a great deal is how do you implement this how do you make it operational and I think that the way we came up with these categories from the field research we did was the language so it actually it’s very interesting because in the early days of psychology they looked at what adjectives people use to describe themselves and then they started to think about personality types it’s very interesting so language is a reflection of mind so people said to us when we were in – I’m proactive I want to do everything and more I want to be ahead of the curve and the others as Pam said said to me less is more you know I’m and so I think that this could be developed but you know to at least be a starting point but we found in our own practice that it comes out of the initial conversation and and we’re always a little worried about checklists and someone because there’s this tendency to to put things in boxes and people you know if they if they feel pigeon-holed from the start or whatever you don’t have an open-ended conversation so that would be the only you know flip side of it so what I saw a man recently who had a unusual lymphoma called the mantle cell lymphoma and it’s a serious problem and it’s in an evolving set of treatments and he said you know I may go to MD Anderson and I said well tell me about yourself what do you do I’m an investor I’m ahead of the curve I’m proactive you know I said well you go to MD Anderson you know you’re gonna get a nuclear bomb that’s what it is you know you’re a maximalist if you came to dana farber or one of the harvard hospitals you’d have a middle and if you went to Cornell while they have a program doing less is more with it looking at very so where do you fit in and why are you thinking this way and is your approach to investing you know the wisest approach in terms of your health you know so it’s it’s a dynamic kind of discussion yeah we we just are worried about again sort of boiling it down to the most simple aspects of it and losing the subtlety and and the interaction between the clinician and the patient thank you very much for joining us today in our colloquium you know I just wanted to ask a question on the minimalist maximalist believer coder model do you think that in a country for instance as in the United Kingdom where there’s a National Health Service and issues of insured versus uninsured versus co-pays deductibles versus being insured and possibly becoming uninsured shortly that there are differences between those two populations in terms of how the perhaps the economic or the the resource risk aspect at the from the individual pursues perceives themselves

in the US could perhaps be different because of that influence it’s an interesting question I don’t think we have any you know real data on it are you referring to the fact that basically financial aspects are going to influence where you where you settle out on this yeah I mean you know if you’re in a situation where there is national health insurance and in that entire population are basically not going to have to factor that in that is that a your population if you’re trying to understand some of these things that drive preferences compared to someone who is going to have to factor in in addition to whether they’re a minimalist or a maximalist how is this going to affect their financial picture from the standpoint of deductibles copays and can they afford it to begin with if they don’t have it covered as a benefit yeah I mean there was a study not too long ago about addressing the issue of co-pays trying to take that out of the picture to see if compliance improved and in fact it made almost no difference in my opinion probably because people had their own idea about whether they really wanted whether they really needed this medicine the maximalists wanted to take it and the minimalists didn’t and the copay was a small but not a major issue I also just impressionistic alee Canada because they’re a number of Canadians we know and and I talked to both physicians and also patients and you know there the system may be a little more flexible than it is in Britain but certainly this the mindset seem to be there now whether people feel more constrained in it you know there’s is the Harley Street doctors in in London who are you know you can go outside National Health Service and and maybe they get the maximalists but you know I think as perhaps are the only data that in terms of the United States that money made no difference in terms of people wanted to take hypertension medications statins and so on thank you I’m glad to have had the opportunity to see your presentation and read your book I’m intrigued by your advocacy use of stories is talking about helping people to make these types of decisions and and the use of narrative as a way of framing the challenge of helping people to imagine the things that they cannot imagine because they have never they’ve never actually experienced those conditions I wonder however if you could comment a little bit about the challenges in finding the right stories to fight people to be talking to to guide decisions and as many of the examples you brought up work treatment contexts you know a person who had surgery person who didn’t have surgery etc I have been particularly thinking recently about preventive context for example vaccinations where some stories are very easy to find I mean you’ll go online you can find plenty of people with stories who believe rightly or wrongly that vaccines may have caused negative health effects finding the stories of prevention is much harder and so I’m wondering if you could talk about how we can use stories in this type of context to deal with those kinds of preventive contexts where what we’re really trying to do is help people to imagine having something happen right well I think it’s a very good point I mean you know first in terms of learning Howard Gardner who’s at Harvard who studied education points out there three ways people get information one is numbers the others graphs and the third is stories and what is most makes the most impact and is sustained in our thinking our stories we live by stories we grow up with stories but and it’s tricky as you say because you go on the internet it’s the Wild West you have every crazy testimonial in the world including autism and this and that even though it’s been disproved and the guy in England was shown to be a charlatan making up the data and so on the problem it reminds me of this that you know the absence of evidence is not evidence so if you say look at me I had a colonoscopy and I don’t have colon cancer that’s not impressive so what you probably need you know our stories where someone said you know I just didn’t want to have a colonoscopy it seemed annoying I didn’t believe in it no one in my family had colon cancer it seemed irrelevant it’s annoying I don’t take that terrible prep and be on the toilet for 12 hours and now I’ve colon cancer and you know the the in terms of prevention you know the the the you know part of the numbers and the debate in terms of prostate and mammogram and you know most people don’t have a problem

when they’re screened and yet when you are the one you know who potentially whose life can be saved or whose life was not saved you know the art the problem also is that the minimalist doubters now come up with and the data are really fuzzy well you know a lot of breast cancers grow slowly so that if you find it later you can still have surgery chemo and radiation and you won’t die alright but having spent a career given people you know radiation and chemotherapy I’d rather have a simple excisional biopsy then take the risk so you know there’s a push back to in terms of prevention right now prevention isn’t it you know for a while it was in ascendancy now it’s kind of being challenged but I think stories of people whose lives might have been saved or improved if they had been prudent about prevention could be a way to go so one of the things that I really liked about your book and then I also really liked about really liked about your talk is that you don’t ever pass judgment on maximizers versus minimizer’s and it seems as though you’re really treating this as a legitimate preference that could potentially be guiding people’s decisions and helping them know what’s best for them that’s how we stayed married exactly that leaves me to wonder whether or not there actually are advantages for being a maximized or a minimizer are there outcomes that could potentially be better if you decide decide chronically in one way or the other and following up on that if you are extreme in either of these traits could that be potentially a negative thing for you in terms of your health outcomes well you know that you know based on the data regarding heart attacks that you will reduce your risk of heart attack by 30 percent by taking the statin so the maximalist will have a survival well it will have a reduced risk of heart attack let’s say because these are non-fatal heart attacks by some small amount and now you have to balance that against the cost of taking the medication the side effects of taking the medication and any sort of yes emotional aspects that you are taking this medicine that you don’t want to take if you’re a minimalist on your quality of life and so how you balance that I mean the experiment has been done with regard to the thing that you can measure which is heart attacks the other things are harder to measure so you know if you want to know if there’s a survival advantage too then then it becomes a little bit more complicated because as you say some maximalists will go on to have treatments that perhaps are don’t do not give a survival advantage so you know moderation is a good thing I think the it’s very complicated you know from an individual point of view you know certainly when Pam said I’m a maximalist and recovery you can I mean you can’t imagine how many people call me for advice about back pain and I’m not an orthopedic surgeon or you know podiatrist or anything but boy do I give them advice about back pain which is don’t have surgery you know which has gone to the opposite and but sometimes you know people decide I’m gonna have surgery and have the risk because it more quickly alleviates the pain and so on and so I think that what’s interesting and as Pam said is that a lot of this involves a dimension is not amenable to measuring in terms of outcomes the way we usually think of outcomes which is a concrete physical dimension of the experience of illness it leads into the subject of regret which we talk about in the book and we do have a chapter in there where we discuss two patients who had surgery both with bad outcomes one was disappointed but no regret in other words didn’t didn’t feel that he had done the wrong thing and the other patient a woman who had foot surgery felt this huge burden that she regretted her decision forever basically and the way they came to the decision and whether it was in concert with their mindset made a huge difference and how do you really measure that a wonderful presentation and and book and prior books to I was delighted to hear you

talk about that you know not using sort of the checklist approach to the different mindsets because I struggled to answer your questions at the beginning about hypertension I’m an internist and so I know well the benefits of taking antihypertensives but I’ve also sort of a you know don’t take drugs unless you have to person so a hard time answering those questions and I think the spectrum is a more realistic sort of and and change and situation in context so it’s not dichotomized in a very clear way for everybody all the time so I think that’s I was dying to hear you talk more about the conversation being the important way of doing that as a doctor so I had a question for you though and this is based on the fact that most of my uninsured patients are minimalists for a reason and one of the things that I work on is studying both empirically and kind of philosophically if you will physician stewardship that is how can we be good stewards of limited pool social resources and I struggle at times with maximalist patients in that regard or the technology-focused patients who think that as long as they get a total body cat scan then they’ll be proven to be healthy so I wonder if you could comment on the implications of these mindsets and stuff for the practice of stewardship okay III think that you don’t want people to do wild and wasteful things and that’s you know stewardship in and it of course depends on the severity of the problem and all the rest and I think that if using the language or the terms say I understand your mindset I understand how you are thinking and approaching this and let me make sure I do you know you you you want to be proactive you want to be ahead of the curve you’re a maximalist you do everything but in this case you know doing a total body cat scan is is not I don’t likely to give you what you want okay and then you can do the typical doctors trick which is to say if you want to be a maximalist you know have the healthiest diet you can possibly have and exercise regularly and you know set some time to de-stress yourself because most maximalists are hyper type a you know all of this kind of stuff and and sort of work with the person on that level now also you know a physician is not obligated to do everything that a patient demands I mean this is you know and it doesn’t it doesn’t mean that it you know it has to be and in fact in the in the beginning of the book one of the internist we profile Jacques Carter we show he has three patients each with a different mindset one of whom is Michele Byrd is this maximalist her blood pressure she wants her blood pressure to never be above 115 systolic and and you know even though she’s had side effects from the medicine and so he says which i think is a wonderful term that a lot of his practices negotiation and he said I’m negotiating with her but he’s not writing a prescription you know and and she sticks with him as her doctor because he she knows that he’s listening he’s respectful but he’s not a rubber stamp and so it’s a challenge on the other hand Mike also concerned is in terms of the evidence and the discussion we had before so the American College of Physicians came out with the you know choose wisely and all of that don’t do a routine a EEG a week later JAMA had an article which was pretty convincing showing that in older people Medicare patients routine EKGs were enormous ly informative about cardiovascular risk in the future and could stratify patients between those who actually you would more encouraged to have say statins at the age of 65 or 70 versus those not so I think we also have to be very careful about this one-size-fits-all you know that it’s it’s you know we’re doing too much less is more and don’t do tests and yet there’s a gray zone and just to add to that in terms of cost I’ll give you another vignette at a patient of mine was convinced that she had heart problem a young patient she would come in you know call up need to be seen all the

time go to the emergency room all the time and finally we we had a real heart-to-heart talk about this as it were and she said to me you know what I really want is an echocardiogram and I said well you know I really you’ve had a lot of tests I don’t think there’s anything wrong with the heart sheet and I said but if you had that and it was normal would you feel a lot better she said yes I would so we did it it was normal two years later no ER visits no visits to the to the office so was that a waste of money or was it not too medical system I appreciate the perspective of finding out where the patients coming from maximalists or minimalist related to their care and their goals of care and treatments and as a clinician I find I’m struggling more and more especially let’s say on an inpatient service with constraints with time spent with patients less and less time there’s other constraints financial whether we like it or not and other demands and I’m meeting people for the first time and unfortunately meeting them often times at the end stages of their disease process and very much would like to find out and need to elicit you know what their perspectives are and I was wondering if you could elaborate a little bit more on how you handle that situation when you really don’t have a rapport with a person but and very perhaps limited time how you can use some of your techniques to get at really what you think the patient you know the patient perspectives would be I think that’s one of the hardest things especially now with the change towards having hospitalists care for patients in the hospital you’re often meeting a patient for the first time who’s very ill and you don’t know them and so difficult on both sides for you and and for the patient to deal with these type of issues that require what we often think as long-term discussion and and input so the one thing we can say is that this language may be helpful if you if you start with that type of language that you can pretty immediately get a feel for what’s going on in the patient or from their family that could help with those decisions but it’s it’s there’s no substitute of course for actually knowing somebody in depth and just the echo I think that you know this idea that everything in a matter in medicine has to conform to efficiency I mean there are things that we do that are quote not efficient in terms of an economic model which is to get a product out in the show this period of time you know it takes time especially when people are making an end-of-life decisions and especially when you know two of the three children don’t agree with the third with their mother or whatever and it’s very disheartening to be frank that so much of the emotional and psychological dimension of medicine which as you get older and you’ve you know you’ve cared for patients you know the the actual clinical information is is largely mastered and so a lot of the gratification of caring for people has to do with that emotional interplay and it calls upon you as a individual to extend yourself to that person none of that is really accounted for in terms of the reconfiguring of the system there’s a lot of lip service given to patient centered care and humanism and and values and preferences is a lot of lip service okay but there was a fascinating perspective in the New England Journal of Medicine a few weeks ago there is not been a single quality measure from Medicare in the last decade that is preference responsive not one and and you know it’s just outrageous so that’s my soapbox thank you very much you