Guest Host: Tamara Keith

Doctors examine x-rays of a patient.

Doctors examine x-rays of a patient.

Navigating the U.S. health care system is often a daunting experience. And the consequences of not getting the right care can be serious – and sometimes even fatal. A recent study showed that medical errors contribute to as many as 400,000 deaths a year in the U.S. But there are steps that we can take to ensure better health outcomes. We talk with the author of a new book who provides tools for becoming a smarter patient advocate, and a health policy expert who’s also a primary care physician. They offer advice on how to improve your chances of getting good medical care.

Guests

  • Leslie Michelson author of "The Patient's Playbook"; chairman, Private Health Management
  • Dr. Kavita Patel fellow and managing director, the Brookings Institution Center for Health Policy; primary care physician at Johns Hopkins Medicine.
  • Dr. Peter Scardino chair of the department of surgery, Memorial Sloan Kettering Cancer Center.

Things You Should Be Asking At The Doctor's Office

8 Essential Questions To Ask Your Doctor About A Diagnosis - The Diane Rehm Show

Diagnostic errors are common, costly and dangerous-and they exist at alarming rates, says Leslie Michelson, the chairman of Private Health Management and author of "The Patient's Playbook." After our show on how to make sure you're getting good medical care, Michelson sat down to offer specific questions you can bring up with your own doctor.

Transcript

  • 11:06:54

    MS. TAMARA KEITHThanks for joining us. I'm Tamara Keith from NPR sitting in for Diane Rehm. She's out for a voice treatment. Going to the doctor can be sort of daunting, even when there isn't anything seriously wrong. We've been programmed to defer to the person in the white coat and often that person is pressed for time and overwhelmed so maybe you don't ask about that nagging shoulder pain or you don't mention the stressful life event that's getting you down.

  • 11:07:21

    MS. TAMARA KEITHAnd what happens when you get a serious diagnosis? It's hard to know what to do next. Patient advocates say get a second opinion, but there are many other things patients can do to improve the odds of a positive outcome and we're joined now by Leslie Michelson. He's the author of "The Patient's Playbook: How To Save Your Life and the Lives of Those You Love." And he argues many of us need to hit a reset on the doctor/patient relationship. Welcome.

  • 11:07:49

    MR. LESLIE MICHELSONWelcome. Thank you so much. It's great to be here.

  • 11:07:51

    KEITHAnd Dr. Kavita Patel is a primary care physician and Johns Hopkins Medicine and she's also a fellow at the Brookings Institution. Thank you for being here as well.

  • 11:08:01

    DR. KAVITA PATELThanks having me.

  • 11:08:03

    KEITHSo Leslie Michelson, let's start at the beginning. The primary care physician. You say that we need to have a relationship with a primary care physician that's maybe different than the one many of us have.

  • 11:08:20

    MICHELSONI agree. The primary care physician should become your healthcare quarterback. It's someone you should strive to have a strong and enduring relationship with, someone who you trust, someone you listen to, someone who listens to you and someone who can give you the guidance that you need when you develop a significant medical issue. There's nobody more important in terms of the foundation of getting the very best medical care.

  • 11:08:47

    KEITHThat sounds awesome, but how do you do that? I feel like, for many of us, we go to the website of our HMO and we do a radius search from our house and we say, all right, sure that name seems nice.

  • 11:09:07

    MICHELSONIn "The Patient's Playbook," I teach you better ways to do it. First thing you can do is make a list of the things that are important to you. Is it easy access on email? Is it after-hours work -- after work hours? Is it the ability to coordinate with other physicians? Secondly, ask other people in your life who do they use? If you have a good OB/GYN, find out who their primary care physician is. If you like your pediatrician, ask them who they use.

  • 11:09:37

    MICHELSONPut together a list of doctors and then go, conduct interviews just as you would if you were selecting a school for your child, if you're interviewing babysitters. This is a very important person in your life and it's important to take it very seriously.

  • 11:09:52

    KEITHDr. Patel.

  • 11:09:54

    PATELSo I think that Leslie deserves a lot of credit for bringing issues out on paper that had previously, I think, been really inaccessible to a lot of patients. I think I'll speak first as a primary care physician that's been on the receiving end of some of those interviews or lists. I think our system, unfortunately, is not set up to allow some of those interactions and so often times, in fact, I would say that majority of my patients end up choosing me for two reasons.

  • 11:10:23

    PATELOne, I accept their insurance and two, I look like I'm not about to retire in the next ten years. And then, our practice, in particular, doesn't have a way to allow for kind of an interview session. We have to have a reason, medically, for someone to come in so it ends up being a little bit of this back and forth that can become a little difficult. But I think that having your kind of expectations on paper and thought through in advance are absolutely the fundamentals of a good relationship.

  • 11:10:53

    KEITHI was talking to a friend who said that she sat down with her mom before she went to the doctor and she said, okay, here are all of the things you need to talk to your doctor about and then her mom went to the doctor and she's Spanish-speaking and I'm not sure what her insurance situation is, but she went to the doctor. She came home and the daughter said, well, did you ask about that? No. Did you ask about that? No. Are we too passive as healthcare consumers?

  • 11:11:24

    MICHELSONWe're entirely too passive. We've become acculturated to be reactive when it comes to our healthcare and what we find is when we become proactive, we do very much better. So that's one of the reasons, in "The Patient's Playbook," I teach everybody to find a healthcare advocate. Find somebody in your family, a dear friend, who can come with you to an important physician's meeting and take notes, make sure that the questions that you put together in advance get answered so that you can not only make sure you ask those questions, but you can remember the answers as well.

  • 11:11:57

    PATELAnd Tamara, to build on that, I think you're highlighting something that I see often and when I did healthcare research would often find in national studies is that patients who are a little older tend to feel like there's a little bit more deference to the white coat as well as patients who do not share maybe the same first language or who might be from a different cultural background. So oftentimes those factors alone can create really kind of difficult and tangible barriers in a patient/physician relationship.

  • 11:12:29

    PATELAnd I don't want to let this all seem like we should let the system or the doctors or the training of doctors not be held responsible. We need to do better to train physicians and clinicians in general to actually do some of the things that Leslie points out so that it's not just for the patients alone.

  • 11:12:47

    KEITHAnd is there, within our current system, are doctors rewarded for that?

  • 11:12:54

    PATELSo they're starting to be? Right now, the majority of our care really is, you know, seeing you face to face when you're sick and generating a bill or a charge for that. We're moving close to a system -- not quite there yet, but we're moving closer to a system where relationships matter and having conversations through email, text and about patient's preferences can actually be part of how we judge "value" in healthcare.

  • 11:13:21

    KEITHLike, potentially billable?

  • 11:13:23

    PATELPotentially billable in a way where it's not just kind of every time you come in. It's billable over, like, the course of a year of your care, for example, which is kind of like capitation or managed care which tends to get a negative response, but we're starting to see that that's taking a little bit of a different hold over the country.

  • 11:13:43

    KEITHListeners, of course, you are the most important part of this conversation and we want to hear from you. The number is 1-800-433-8850. The email address is drshow@wamu.org. Or Twitter @drshow. So please join us that way. Leslie, what kind of difference can it make to be a good healthcare advocate for yourself or someone you care about?

  • 11:14:11

    MICHELSONYou know, it's the difference between life and death or life with a significant disability and lifelong pain. What we find is that when patients assert themselves, when they organize their medical records, they become active participants with their physicians. They learn how to use the internet to identify physicians with the requisite expertise for what they have and they become partners with their physicians. The outcomes are enormously different.

  • 11:14:38

    MICHELSONI can give you a terrific example...

  • 11:14:39

    KEITHPlease.

  • 11:14:39

    MICHELSON...of something that didn't work well that should've worked fine. We tell the story in "The Patient's Playbook" of a gentleman named Jim who had shortness of breath. He went down on one knee, feared he was having a heart attack, called a cardiologist he had no interaction with before who scheduled him for an angiogram the next day and inserted two stints in his heart.

  • 11:14:59

    KEITHWhile he was asleep.

  • 11:15:00

    MICHELSONWhile he was asleep and without him knowing it. And it turns out there was really nothing wrong with his heart. He had a lung problem and had he been an active, knowledgeable, effective consumer, rather than go directly to a cardiologist he didn't know, he would've gone to his primary care physician who probably would've sent him to a pulmonologist who could've taken care of his problem which related to his lungs and not his heart.

  • 11:15:27

    MICHELSONAnd the real problem is, those stints are going to be with him forever and they made it much, much more difficult to identify, diagnose and treat the lung problem that was his core issue.

  • 11:15:37

    KEITHDr. Patel?

  • 11:15:38

    PATELNo, I completely agree that having some better advocacy for yourself as well as a primary care physician, which I think is central to Leslie's message in "The Patient's Playbook," is the successful factor. I still think that even when you have -- and Leslie talks about this. Even when you have a great relationship, which I'd like to think I have with a lot of my patients, we miss things. We make mistakes and so having the ability to constantly kind of make decisions for yourself can be a huge burden as a patient so I think that one of the best things that people like myself and yourself who are health right now can do is to have kind of that bad cop, that person in your life who can start to help you formulate those questions.

  • 11:16:20

    PATELBecause I tell you, Tamara, when you're sick, you really don't have sometimes the ability to make this judgments.

  • 11:16:26

    KEITHLeslie, that's this idea that you talk about in your book of wearing a paper gown sitting on a cold table and being told and now make a decision about something that you haven't done any research on.

  • 11:16:39

    MICHELSONYeah, it's an awful situation that people get into and it's not because physicians want to put them in it. It's a system that creates that. And I believe the most powerful force on planet earth, harnessing the power of 300 million Americans who assert themselves as responsible and respectful consumers is the best chance to change that. And if you happen to get sick, then you'll be very vulnerable, one of the most important things you can do is to assemble a support team, people who can provide you the clinical, logistic, emotional, intellectual support that you're going to need to get the very best outcome.

  • 11:17:16

    KEITHDr. Patel, is that practical for everybody with every form of insurance?

  • 11:17:20

    PATELSo it's not practical for, for example, a lot of my Medicaid patients to do that because, quite honestly, I'm one of the few people that takes new Medicaid patients in the District of Columbia and I'll people who travel all the way from Anacostia on, like, five buses to get to see our practice. And so I think that where -- where I think it becomes really difficult and we have to do a better job -- and I'm in a very kind of elite academic institution is with those populations for whom we have constantly erected barriers to access.

  • 11:17:55

    KEITHComing up, more of our conversation with Leslie Michelson and Dr. Kavita Patel.

  • 11:20:01

    KEITHWelcome back. I'm Tamara Keith sitting in for Diane Rehm. And we have a comment here on Facebook from someone named Nora. And I want to read it to our guests. Our guests are: Leslie Michelson, he's the author of "The Patient's Playbook: How to Save Your Life and the Lives of Those You Love." And also Dr. Kavita Patel, who is at the Brookings Institution and is also a primary care physician at Johns Hopkins Medicine.

  • 11:20:25

    KEITHHere's the email or the Facebook post from Nora. She says, I suffered irreversible muscle damage after the doctor did not believe me when I said the statin drugs gave me problems. One time I fell because of the weakness in my legs and I was injured very badly. I never healed properly. I'd rather not go to doctors now, since I always end up worse off. Leslie, you run a company -- you're the chairman of Private Health Management, which is a company that helps people get better medical care. I imagine you hear from people in sort of similar levels of hopelessness.

  • 11:21:00

    MICHELSONI hear that virtually every single day and I can certainly relate to it. And it just breaks my heart. I, too, have had statins and I've had muscle problems as a result of statins. So I can relate on a lot of different dimensions to that. But it saddens me greatly that someone would abandon all of organized medicine because they had inadequate treatment from a single physician. No one's going to tell you that all doctors are the same. There's great variety. And what I hope this person would do is learn how to use the Internet and other tools to find more capable physicians that will listen to her, will have the clinical expertise she needs and get her the treatment that she deserves.

  • 11:21:38

    KEITHDr. Patel.

  • 11:21:39

    PATELAbsolutely. Just briefly, for maybe listeners who might not know, a statin medication is used generally to help lower cholesterol. It's a very commonly prescribed drug because of the clinical indication. And one of the side effects can be muscle aches and so this is something that we see. And what that commenter really gets to is the kind of sense that medicine is arrogant. I mean, I'm just going to take it on. It's that doctors are arrogant, medicine is arrogant. And amongst ourselves, physicians, we have a joke that we hate to see other doctors because we don't like dealing with the system because we know too much about it.

  • 11:22:16

    PATELSo my advice is to not necessarily diminish your own health but to turn around and see how they can find somebody who can respond to them. And in this day and age, you can do that even over Skype. We can do visits for clinical purposes over -- in the comfort of your own home, which might be a better fit for many people.

  • 11:22:36

    KEITHIn terms of finding a medical care provider or picking the right hospital or the right clinic, is there like Yelp or something? I mean, is there something out there that people can use to easily find accurate information?

  • 11:22:53

    PATELThere's multiple sources. I would say -- and, you know, you may have heard that Yelp is actually going to start doing health care ratings. So...

  • 11:22:58

    KEITHYelp, now for doctors.

  • 11:22:59

    PATELSo I do think that looking at the online sources that, you know, Vitals -- any number of companies that do ratings on doctors is helpful. But I think Leslie pointed out probably the most helpful thing, looking and finding out who your friends and family and trusted ones you know go to see as a physician is a good starting place and then doing some objective research, especially around surgical procedures, Tamara.

  • 11:23:23

    PATELI will say that there is a great deal of information about individual surgeons' performances available on the Medicare website. Even if you're not a Medicare patient, you can see the quality scores and kind of the performance metrics for those physicians and especially when you're getting a procedure done. And I think Leslie has some pearls inside his book as well as some of the data available publicly that viewers and listeners should go to. And ProPublica is a great website that puts this...

  • 11:23:54

    KEITHAnd that's the investigative journalism website.

  • 11:23:56

    PATELCorrect. And they put this into a very patient-friendly -- these databases I just mentioned from the government -- they put them in a very patient-friendly format.

  • 11:24:03

    KEITHLeslie, will you share some of these pearls from your book?

  • 11:24:06

    MICHELSONSure. I call it a treasure trove. There are 60,000 articles published every month in the medical literature advancing medical science. And there are so many good websites that most people don't know about. Another one, in addition to the ones Dr. Patel mentioned, is Expertscape. It's a terrifically simple website. You just go on it, you type in the disease that you have and you push search. You push the city you're in and you will immediately identify the physicians who've done the most research on that particular disease.

  • 11:24:34

    MICHELSONIf you happen to be a cancer patient and dealing with that dreaded disease, the second leading killer in the United States, then National Comprehensive Cancer Network has put together a series of treatment guidelines that are incredibly patient friendly. They spent hundreds of millions of dollars on them and they're free to everybody who can get online by just typing in the NCCN and putting in their disease. So we all have learned how to use the Internet to buy cars, to rent apartments, to figure out what schools we need, to go on vacations. If you have that skill set, you can take the very same set skills and figure out how to get much better health care online.

  • 11:25:13

    KEITHWhy don't we do that? I mean, maybe some of us do. But I feel like, possibly we don't.

  • 11:25:21

    PATELI think a lot of it is human behavior. I will say that over the years that I've been practicing, I've seen a lot of denial. And being sick is hard and especially when you're given a diagnosis such as cancer or something like that. The last thing you want to do -- the first instinct -- and this has been studied -- the first instinct is to kind of just shut off, kind of, your ears and your eyes. And that's why, as doctors, we know not to give really valuable information as soon as you give that kind of a diagnosis. These people just can't listen and they need time to process. And I think that that's, for a lot of patients, that sometimes continues on in perpetuity.

  • 11:25:57

    PATELYou want to trust. We want to just believe that the doctors is telling us everything we need to know and that that's all that we need to do is listen. And I think what we're both pointing out, but especially for some of these diagnoses like cancers and other things that might be even more rare, is that you really do need to stop and think about a second look, or at least just reviewing your information.

  • 11:26:21

    KEITHAnd, Leslie, you talked about getting a second opinion. Which is, it's sort of universal advice, but universal advice that seems hard and, like, maybe it wouldn't be nice to your regular doctor. Or why wouldn't you trust your doctor? And so second opinions.

  • 11:26:37

    MICHELSONAnd it's not a matter of mistrusting your physician. It's a matter of recognizing just how complicated medicine is and how important and potentially fragile your health can be. So what we encourage people to do is get an expert opinion. In "The Patient's Playbook," I talk about how to do that. So it's not just going to another physician but going to one that has demonstrable experience and expertise in exactly the condition you have. Medicine is so complex. Biomedical research is advancing at such a rapid rate it's almost impossible for any human being -- no matter how smart, how dedicated, and how hard working -- to be on top of the advances along a variety of different things.

  • 11:27:23

    MICHELSONSo what I encourage everyone to do is go to a physician who's spent most of their career doing -- working on the exact condition that you have. And that'll make a big difference.

  • 11:27:33

    KEITHDr. Patel.

  • 11:27:34

    PATELSo I'll give kind of two brief anecdotes. One is with a patient of mine, a 43-year-old woman who had a really complex form of kidney cancer and has been treated by one of the most, you know, prestigious institutions in academic medicine known for that specialty. And then she was told, there's not much more we can do. And it was difficult for her to obtain a second opinion because people in other institutions, who knew that she had been treated by one of the most world-renowned experts, were a little hesitant to question that expert...

  • 11:28:09

    KEITHHuh.

  • 11:28:09

    PATEL...or to say, oh maybe we didn't do everything. And I actually had to step in. She was doing this on her own. I had to step in and take time to actually call some of the other institutions and say, you know what? She's 43. She's really young. She's got a great life ahead of her. If there's anything -- if you're even willing to look at her chart, that would be a really great help to all of us.

  • 11:28:29

    KEITHHuh.

  • 11:28:31

    PATELAnd so I think that what I learned from that process -- and she's actually still alive, this is three years later, when she was told she would only have about six months, she's still alive -- but she had to do this process with two more academic institutions and had to eventually move from the D.C. area to California in order to finally get a solution. And so I think that the process can be brutal and it can be taxing. And it can be expensive. And so my worry and my, kind of, what keeps me up at night is how do we do this for my severely schizophrenic patient who has a guardian who has to come in with me for visits to try to help make sure that nothing slips through the cracks. And so I think our society, again, has a lot of room to do better.

  • 11:29:17

    KEITHLet's actually go to the phones real quick. And, Steve, from Orlando, Fla., we don't have a ton of time, but please tell us what's going on with you.

  • 11:29:29

    STEVEThanks for allowing me on the program. It's just funny that you were talking about the exact same thing that I've been going through in the last four months. In May, I had back surgery. Originally, I went to my primary care physician, who's an internist. He was kind of against the surgical procedure but the pain was so bad that I had to do something. The surgery went okay, although there's still some nerve sensitivity. When I went back to the primary care physician, now he's got -- his recommendation was to go on a bunch of drugs like Lyrica and Celebrex. His approach seems to be better living through chemistry.

  • 11:30:17

    STEVEAnd after I realized that, I thought, well, that's not exactly what I want to do. Even the physical therapist had said, there's no more -- there's not much more that I can do for you. So now I got three different, totally different approaches to analyze as a patient.

  • 11:30:37

    KEITHYou're feeling like something, like a ping-pong ball.

  • 11:30:40

    STEVEAbsolutely. And these are -- I get the sense that each of these people are, you know, dedicated to their profession. But I'm not sure what to do, really not sure what to do.

  • 11:30:53

    KEITHWell, thank you for your call. Leslie?

  • 11:30:56

    MICHELSONSteve, I'm so sorry to hear that. I've been through this kind of situation with so many people. And back pain can be so devastating. So I have to tell you, my heart is with you. It's a tough problem. You know, I'm not a physician and I can't diagnose or treat you, certainly not over the radio. But I do have a specific suggestion, which is to go online, to find some of the very top spine surgeon experts in your community at the major hospitals. See who's done the most academic work on spine surgery. Collect all your medical records, summarize them. Make an appointment and see what they think about it. My guess is you'll get a better perspective that will help clarify some of the confusion and get you back on a healing path.

  • 11:31:41

    PATELAnd the only thing to add for Steve is for you to just try to think about your own personal preferences. If you do not want to go on a lot of medications -- and I hear that a lot from patients -- that should really just be something that you say upfront. Just say, I don't know what the universe of possibilities are, doctor, but I really would prefer to not be on any or as little medication as possible. Because I think that doctors feel like they want to give you a band-aid, and that sometimes comes in the form of pills.

  • 11:32:10

    KEITHI feel like this gets at something that you talk about in the book, which is that medicine -- we think of it as a science, but much of the time it's really more of an art.

  • 11:32:20

    MICHELSONAbsolutely. And it's advancing so rapidly, it's difficult for physicians to stay current with the way things are moving forward.

  • 11:32:27

    PATELRight. And again, having a great primary care physician is a good start. But there's so much that's happening in a lot of the subspecialty arenas that sometimes it's hard for a primary care doctor, such as myself, to keep up with every last kind of research breakthrough. And so it is important to have a network of specialists that you can really trust and work with when you do have complex situations.

  • 11:32:52

    KEITHI'm Tamara Keith of NPR. You're listening to "The Diane Rehm Show." If you'd like to join us, call 1-800-433-8850 or send an email to drshow@wamu.org. You can find us on Facebook or send us a tweet at #drshow. And I want to take a call from Michelle in Durham, N.C. Michelle, go ahead.

  • 11:33:19

    MICHELLEHi, Tamara. Thanks for having me on the show.

  • 11:33:21

    KEITHThanks for being on the show.

  • 11:33:23

    MICHELLESure. So I'm a physician. And I just wanted to bring up the point that, you know, I feel like I'm hearing a lot today from your guests that if you just have the right information and if you just, you know, do the right research and say the right things and advocate for yourself -- which is all so important -- but if you do all those things, the system will work. And I just have not found that to be true, more and more and more. And the reason, I feel, is because of so much time pressure. Even the brightest surgeon, even the one, you know, in the field who's done the most research, I feel like careless mistakes, really horrendous errors happen more and more because we're all under so much pressure to do things fast and bill.

  • 11:34:09

    MICHELLEAnd I think a guest earlier said that we're moving more toward being reimbursed for a relationship. Well, I haven't seen that yet. I don't know if your guests have. But I kind of feel like we're stumbling around trying to say, how do we get the most out of a broken system? When I wonder if what we need to be saying is, how can we fix the system? How can we make doctors have more time to spend with their patients so that they are having the mental space to think about these issues?

  • 11:34:33

    KEITHDr. Patel, I imagine you've thought about these things quite a bit.

  • 11:34:36

    PATELRight. So on my policy hat that I wear, we spend a lot of time looking at kind of innovative payment models and innovative delivery system reforms. When I was referring to moving away from kind of what we do now, which is fee-for-service or volume-based care, it's really moving closer towards, like, what we call accountable care. And so we're seeing these things kind of popping up all around the country, accountable care organizations and organizations where they're allowing for physicians to have, for example, 40 minutes with a patient, which is unheard of. I still have 15 minutes with most patients.

  • 11:35:10

    KEITHWow.

  • 11:35:10

    PATELSo there are ways to do this. But they all have to be done with a very different financing mechanism. So, again, the caller is correct. But I will say that if it sounded like the advice is, don't worry and if you have all the perfect information, then everything else will work, that's not true. That's why I do think we have to start with fixing the system, the financing, the reimbursement, as well as also how we're trained. We weren't trained to do these very compressed decision making. We were trained in academic institutions where it seemed like we had the luxury of time. And the caller is correct. We absolutely don't have that right now.

  • 11:35:50

    PATELWhich is why a lot of my patients go into concierge practices, where they can get more time with their doctors. But then not everyone can afford that type of care.

  • 11:36:00

    KEITHAnd I want to read an email, perfect segue to this email from Juda. She says, has there been a study looking at possible advantages of joining a signature or a boutique practice that requires a yearly fee over and above any actual costs? What happens around issue of usual and customary fees and insurance? And that boutique or signature is another way of saying concierge. These are sort of these new practices that have popped up.

  • 11:36:26

    PATELSo in terms of research, I only know of one limited study that looked at quality metrics, to see if there was any difference in quality of care provided with concierge practices and kind of quote "regular" practices. And there was no clinically or statistically significant difference in the quality of care. Now, keep in mind, those are limited measures. What I do know, just from observation and perception, is that patients really do feel like they, one, they do objectively get more time with their doctor.

  • 11:36:59

    PATELAnd then, depending on the practice, some practices will help people file the insurance paperwork, while the patients still have to pay upfront for the cost of the visit. But then the actual practice will help them file some of the paperwork so that they can get reimbursed for some piece of that. But the yearly fee, they do not get reimbursed for.

  • 11:37:19

    KEITHDr. Kavita Patel is at the Brookings Institution and she's also a primary care physician at Johns Hopkins Medicine. Leslie Michelson is the author of "The Patient's Playbook." And coming up, more on how to take control of your own health care and your calls and questions for our panel. Stay tuned.

  • 11:40:00

    KEITHWelcome back. I'm Tamara Keith of NPR, sitting in for Diane Rehm. And today we are talking about taking control of your health care. We're joined by the author of "The Patient's Playbook," Leslie Michelson. We also have Dr. Kavita Patel in the studio. And joining us now by phone is Dr. Peter Scardino, chair of the Department of Surgery at Memorial Sloan Kettering Cancer Center. Thank you so much for joining us, Dr. Scardino.

  • 11:40:27

    DR. PETER SCARDINOIt's a pleasure. Delighted to be with you, Tamara.

  • 11:40:29

    KEITHSo you've been listening to this whole show. Are there things that you really thought you wanted to jump in, that you want a chance to mention?

  • 11:40:38

    SCARDINOWell, I appreciate very much the opportunity to do that, and there are many things about Leslie's book that I found interesting and exciting and very helpful, both rang true to me as a practicing doctor, as an oncologist, but also as a patient and a family member who has to search for the right kind of doctors and the right kind of treatment when my friends and family members come up with problems. So Leslie's book rang true to me. I thought it was very helpful, balanced, accurate and respectful of the medical profession but also realistic about the limitations, and you've pointed out many of those limitations.

  • 11:41:17

    KEITHSo we've talked about finding a primary care physician. How do you pick a surgeon?

  • 11:41:24

    SCARDINOWell, I think it's challenging also, but I think Leslie's points are well-taken, and certainly the old advice, get a second opinion when you're faced surgery, is a very good one. You know, we see that all the time. Patients come in diagnosed with a particular cancer and are immediately told they have to have surgery right away, but the ones who stop, take a deep breath and go for a second opinion sometimes find out surgery may not be necessary, or it may not be the right timing, or the diagnosis may even be different.

  • 11:41:55

    SCARDINOIn oncology, you know, we know that one to two out of every 100 people diagnosed with cancer, when their pathology slides are reviewed by an expert pathologist in the area, interpret it as not cancer.

  • 11:42:09

    KEITHWow.

  • 11:42:09

    SCARDINOAnd if you translate that into the one and a half million people diagnosed with cancer each year in the United States, that's, you know, that's 15,000 patients. that's a lot of people who are misdiagnosed. And another 20 percent of the time, pathologists say, when they look at the slides, they read them differently and make a different enough interpretation that it alters the treatment plan. So when you're faced with surgery or a serious, life-threatening disease like cancer, it certainly makes a lot of sense to think about getting a second opinion.

  • 11:42:44

    KEITHI want to toss this around to everyone here on the panel, overtreatment. Is that just as dangerous, or more dangerous, than under treatment?

  • 11:42:54

    PATELAbsolutely. Virtually every study on this topic has shown that about 30 percent of everything that's done in medicine is unnecessary or, even worse, counterproductive. We as patients want to go to doctors when we have a cough or a cold and get an antibiotic to take care of it. Or our back hurts, and we want to get surgery. But it turns out that sometimes the tincture of time, letting Mother Nature heal, doing things that are less invasive, are a whole lot better. And we as a society need to recondition ourselves to understand that and appreciate it.

  • 11:43:26

    KEITHWe just all think, I hurt, fix it.

  • 11:43:31

    MICHELSONYes, and I think also that just to go back to that earlier caller who's a physician, who said that, you know, time is so precious, basically, that this is exactly why sometimes it's easier to just say, okay, I'll just write for the antibiotic because it's far easier than to sit down and kind of counsel people over why it's highly unlikely that they need the antibiotic in the first place. And so part of kind of advocating for better medicine is to really also understand when you have a physician in front of you, who can spend the time to talk to you about something, especially something as serious as a diagnosis like cancer.

  • 11:44:06

    KEITHDr. Scardino, I also -- you wrote the forward to "The Patient's Playbook," the forward to that book, and you talk about how basically anyone could come see you, could come see, you know, a top cancer doctor, that being on Medicare or Medicaid shouldn't necessarily be an obstacle to getting top-notch care.

  • 11:44:32

    SCARDINOI think that's generally true. Leslie makes a point in the book that most of the major academic centers, not all but almost all of the major academic centers and cancer treatment centers, take virtually all insurances. And that is rarely a barrier to getting access to an expert opinion for cancer. But it requires a little bit of shopping around and talking, depending upon what your coverage is.

  • 11:44:58

    SCARDINOTamara, I'd like to weigh in with an example. We talked about overtreatment, and in my field, in prostate cancer, it's been a major problem. I can think of a man that I saw a number of years ago who had an elevated PSA, a biopsy. A small, very favorable cancer was found. He was urged to have surgery right away, made his way in for a second opinion. We put him on active surveillance, and that was over 10 years ago, and he's still doing fine with no change in his cancer. And that probably happens in 30 to 40 percent of patients diagnosed with prostate cancer nowadays.

  • 11:45:29

    SCARDINOSo it can make a big difference to use that opportunity to get another opinion.

  • 11:45:37

    KEITHSo it sounds like that you're saying is slow down, take a breath.

  • 11:45:42

    SCARDINOIt's rare that that would be unallowed. I mean some -- if you're having a heart attack or something that urgent, you have to do something very quickly, but for most diseases, even life-threatening diseases, you have enough time that it's better to do it right than to do it quick.

  • 11:45:58

    KEITHI want to go to the phones and Cheryl (PH) in Houston, Texas. Cheryl, what's your question?

  • 11:46:06

    CHERYLHi, yeah, I wanted to talk -- I recently had ankle surgery, and I'm a patient who asks tons of questions. I even, you know, sent a list by email, about 17 different things before my surgery. You know, what if I don't have surgery? Will this tendon heal on its own? And so -- but I think the problem is sometimes there's questions we don't (inaudible) that we need to ask. And even on the morning of my surgery, they had to move my heel bone, and I said -- you know, and the Internet can be a dangerous place to look for things like this on your own because you don't know, Dr. Google, you know.

  • 11:46:36

    CHERYLBut I decided, do I really want to know how they do that? How do they move the heel bone? So I did look, and it involved screws and pins and stuff. And so I finally asked the doctor, I said, so are you going to be putting screws in my heel. He's, like, well, yeah. And I was, like, oh, okay, the morning of the surgery. Are you going to have to take them out? No, they'll be okay. And then he said, anything else. And I said, I have a feeling there's something I should be asking but I don't know I should need to ask.

  • 11:46:59

    CHERYLAnd my husband, who jokes about how many questions I ask, too many questions about everything, he -- the doctor said, no, I'm pretty sure you thought of everything. And my husband laughed, you know. And so we go, I have the surgery, everything's fine, everything's great. I come home, and I open this patient folder about my medication and everything, and there's this little note in there. During the course of your procedure, you received donated tissue, you know, that was given at the time of someone's death. And I just went, oh my goodness, you know.

  • 11:47:26

    KEITHSee, there was something. There was something you forgot to ask about.

  • 11:47:30

    CHERYLAnd I just think, you know, and so I said something, you know, like I came back after two weeks of surgery, and I got a real cast after the bandage, and then the other thing is during the course of my 17 questions by email, I had asked about how long is the recovery, how -- what kind of cast will I have, and, you know, how long am I off my feet, and when can I start walking. So he -- I'm pretty sure we went through -- he went through one by one and said, okay, well, six weeks in a cast, and then we go back in this boot that I had, that little air cast that you can take on and off.

  • 11:47:59

    KEITHSure.

  • 11:47:59

    CHERYLAnd because it's my right foot, I can't drive unless I can take that cast off.

  • 11:48:04

    KEITHCheryl, I want to toss this out and broaden it out a little bit to our guests here. Dr. Patel, Dr. Scardino, what -- what should people be asking before they go into surgery? What are the questions that you absolutely have to ask your doctor?

  • 11:48:18

    SCARDINOWell, I certainly think that you have to ask about the basics of the procedure, the fundamental, most common risk, the possible complications and outcome, what to expect of your recovery. And -- but what you're going to get is what happens to the average patient and the rare, more serious complications. One trick is to ask your doctor to speak to a couple of his patients who have had a similar procedure and find out what their perspective is. The patient's perspective on how long it took to recovery may be a little bit different than the surgeon.

  • 11:48:54

    KEITHDr. Patel?

  • 11:48:55

    PATELAnd this is - to build on that, I end up doing a lot of the pre-ops for these surgeries. A lot of these surgeries require a primary care physician to do kind of a pre-op, and Cheryl may have had one, maybe not. But that is a great opportunity to ask the primary care physician, and then I'm going to advocate for the other people in the office because sometimes it's the nurse or the nurse practitioner that works with the surgeon, who is the best person to ask these questions to because they get all the calls from patients before and after and around complications.

  • 11:49:31

    PATELAnd sometimes pulling aside a nurse who works with the surgeon and someone who knows the surgeon well, and you can have that conversation, Cheryl, of what did I forget to ask, or what are some typical things that people who have done this have asked you about after they see you and the follow-up visit. And those can be good triggers for the types of things, I think, Cheryl.

  • 11:49:51

    PATELBut at the end of the day, it's hard to think about absolutely everything, and so I would definitely recommend, as you did, reading through those packets, even in advance, if you can get them.

  • 11:50:01

    KEITHDr. Scardino, I know that you have lives to save and things to do, and so we really appreciate your time. Dr. Peter Scardino, chair of the Department of Surgery at Memorial Sloan Kettering Cancer Center. Thanks for joining us on the Diane Rehm Show.

  • 11:50:14

    SCARDINOThank you, a pleasure being with you.

  • 11:50:18

    KEITHAnd we have a tweet here from Nathan. He says, I have my first annual physical with a new primary care physician. I'm 35 years old, healthy, active. What are my first three questions to the physician? Leslie, I'll toss that one to you.

  • 11:50:32

    MICHELSONI think the first question -- and Nathan, it's good of you to be getting your first physical, so kudos to you. The first question I would ask is, what do you think about -- how do you feel about helping me stay healthy over time? Can I count on you to monitor my cholesterol, to monitor my blood pressure, to let me know if I'm getting a little too paunchy and that I've got to lose some weight and hit the gym more often? The second question is, I want to make sure that I can get to you when I need to. If I'm out of town, and I'm having some gastric problem, is there someone in your office I'll be able to call so I can get help?

  • 11:51:10

    MICHELSONAnd then the third question is, I have a negative result on a blood test or some imaging or some other work, how can I be sure that you're going to let me know that? Because the data show that up to eight percent of all significant findings are never communicated to patients because of the chaos of the system.

  • 11:51:28

    KEITHDr. Patel, what are the first three questions you want to hear?

  • 11:51:33

    PATELSo that's a loaded question. The first three things that I think anybody, and I've had over the years different people do various iterations of this, is number one, kind of how can I get in touch with you, or what's the way to get in touch with you that's the most efficient, number -- so communication style. Number two is can you give me a sense of what I should be doing in between visits? Because a 35-year-old man in general rarely needs to come to the doctor. So it's a lot about kind of what I see happens in 99.999 percent of your life. And so that's the second question that I would kind of go for.

  • 11:52:08

    PATELAnd then the third one is, you know, what should -- when do I need to come in? So that's really kind of a nail-biter because people will wake up on a Saturday, have sniffles and wonder is this the flu, I've got co-workers who are sick. Do I need to get to the doctor because I've heard you've got to get that flu stuff in the first 24 hours? And so I think it's great to kind of anticipate some of this advance and ask me, or your primary care doctor, when do I need to come in.

  • 11:52:32

    KEITHLeslie Michelson, some of our listeners have called in, and they want you to repeat some of those websites where people can find resources, find experts. So let's go through it again.

  • 11:52:44

    MICHELSONSure, I'm happy to do it. It's all in great detail in "The Patient's Playbook." First...

  • 11:52:50

    KEITHFor sale at stores nearby.

  • 11:52:50

    MICHELSONWell, you said it, not me. Not on sale until the morning, though. The first is Expert Scape. It's a terrific website for identifying those physicians who have been most productive on research. The second is the National Comprehensive Cancer Center -- National, I'm sorry, Comprehensive Cancer Network, NCCN, I think, dot-org or dot-com. That's great for cancer patients because it has the established protocols for the treatment of all the cancers.

  • 11:53:18

    KEITHI'm Tamara Keith, and you're listening to the Diane Rehm Show. You earlier talked about building a support team. What does that mean?

  • 11:53:32

    MICHELSONWhen you're diagnosed with a tough condition, your anxiety goes up, and your capacity to function, make rational decisions, do research, tends to diminish. It's typically the hardest time in anyone's life, and what I encourage everyone to do is assemble a support team for that time. Have someone who can help you do the research that you need, someone who can help you with the logistics, someone who can help you emotionally and someone who can help you intellectually.

  • 11:54:00

    MICHELSONLet me just give you an example. We all know someone in our lives who's just the most compulsive researcher, that person who was in the library all the time in college, that person who can find the absolute cheapest flight.

  • 11:54:10

    KEITHThe person who tells me to buy the right TV.

  • 11:54:12

    MICHELSONOn the right day.

  • 11:54:14

    KEITHYes.

  • 11:54:15

    MICHELSONThat's the person you want to do your clinical research for you and support you. And we all, hopefully, have someone in our lives who, as soon as you pick up the phone and say hello, they say what's wrong because they're wired to you emotionally. They know how you're feeling. That's the person you want to ask to provide your emotional support, as well. And what I have found is that when people have either a single person or a team of loved ones and friends supporting them, they make better decisions, they get better care, they have less anxiety, and they get better outcomes.

  • 11:54:47

    KEITHI want to take one last call, Lucy from Seven Hills, Ohio. Lucy, welcome.

  • 11:54:52

    LUCYGood morning, thank you. I just want to ask your panel -- pardon me, I'm sorry -- to speak to the paradox of how some of the best -- I live in the Cleveland area, Cleveland, Ohio, how some of the largest, most premier hospital systems ironically have some of the best specialists, such as the surgeon that just did surgery on me three weeks ago, but in order to get to the surgeon or the specialist, one has to go through a labyrinth of protocol.

  • 11:55:22

    LUCYIn my situation, what happened was I was, I believe, misdiagnosed with an eye drainage problem, it's called dacryocystitis, and I wound up being misdiagnosed, and then I was subsequently hospitalized and given heavy antibiotics, a CAT scan, which I'm not happy about, and to sum up quickly, a year later I was summarily greeted by the specialist asking me why I was wasting hospital resources.

  • 11:55:47

    LUCYSo naturally I left and when went to the second-opinion hospital to get my surgery, and I'm very happy, by the way, with the surgery, but I would like your panel to address this. How does one navigate this incredible system to get to the specialist without being misdiagnosed or finding that it's too late? And by the way, I just want to throw out that I am that compulsive researcher. So I'll just, I'll hang up now and listen to your panel. Thank you.

  • 11:56:12

    KEITHThanks so much for that great question, Lucy.

  • 11:56:16

    MICHELSONYeah, I'll take the first shot at that. I'm so sorry to learn of this. You know, unfortunately misdiagnoses and mistreatment happen all too often in our system, and disrespectful treatment by physicians to patients also happens too often. So I'm so sorry to hear that. But I think the key is to follow a structured process, where you want to make sure that you understand what your condition is, make sure that the diagnosis has been confirmed in the first instance, as Dr. Scardino said. I believe that every significant diagnosis should be independently confirmed, and you as a patient need to understand when and why you need to be treated. You need to educate yourself on the condition, and you need to meet with physicians with deep experience in exactly what you have.

  • 11:57:01

    MICHELSONAnd once you've done that, you've done everything you can. So I'm sorry it didn't work out for you, but perhaps you can help others with the same diagnosis not have to deal with what you did.

  • 11:57:13

    KEITHThat's Dr. -- not doctor, that's Leslie Michelson. He's the author of "The Patient's Playbook: How to Save Your Life and the Lives of Those You Love." He's also founder and chairman of Private Health Management. We were joined this hour also by Dr. Kavita Patel, who is at the Brookings Institution and is a physician at the Johns Hopkins Medicine -- at Johns Hopkins Medicine. And I'm Tamara Keith of NPR, sitting in for Diane Rehm. Thanks for listening.

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