A Q&A with Leslie Michelson about The Patient's Playbook

Leslie Michelson's terrific book on navigating the healthcare system, The Patient’s Playbook, is coming out in paperback later this month. 

Our general manager Sally Haldorson, navigating the realities of the system due to a family medical emergency at the time when the book was released, found the advice and guidance Michelson offered so helpful that she got a copy for everyone in the office. And Deb Lewis, our longtime friend and colleague from Penguin Random House, sent us copies to give away to our customers and readers. 

Sally wrote then that, "Within every conversation about healthcare is also a conversation about our mortality. While none of us want to go through chemotherapy or surgery or chronic disease maintenance, one thing is true: if you don’t act as a defender of your health, who will? And with The Patient’s Playbook on your bookshelf, you will have a game plan for turning defense into offense in order to take control of your own healthcare."

Handing a book on healthcare to someone, and saying "you'll need this someday" is what you might call a tough sell. People don't want to think about. But the conversation is important, and with the paperback coming out this month, we thought we'd revisit it. 

Sally sent Leslie some questions, and he was kind enough to answer. 

And if you want to be more proactive about your health, and a more intelligent and engaged healthcare consumer for your entire family, Michelson also a new podcast, The No-Mistake Zone, launching today, so keep your eye out for that. New and upcoming episodes include:

• Throw Out Your Diet Books: Good Health Comes Down to 5 Things
• Sleep Secrets for New Parents
• How to Save Money During Open Enrollment
• Heart Attack! The Four Words You Must Say
• How to Find the Best Doctor For You
• 3 Signs It’s Time to Fire Your Doctor
• What it Feels Like to Beat Cancer
• Chronic Conditions: 3 Things to Watch
• Ask Leslie Anything!

You can subscribe on iTunes or download episodes at www.PatientsPlaybook.com. 

And now, on to our interview…

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Sally Haldorson: It seems as though in writing this book you've a strong commitment to insuring that people realize doctors are human, with as many presuppositions and influences and biases as any professional. In your introduction, you write in regards to the demands on primary care physicians: "No matter how charismatic, empathetic, and effective a doctor is, he or she cannot care for a human being in fifteen minutes." Yikes! I think most of us can think back to our last doctor's visit, whether 15 minutes or longer, and wonder just what was missed. How does planting this seed of doubt in the process (dictated by insurance companies) help empower patients? And do you think it is key that you aren't an MD, so you can raise such questions?

Leslie Michelson: Physicians work very hard to do the best that they can in a world of constraints. They're under enormous pressures to see more patients, more efficiently, while meeting enormous regulatory and reporting responsibilities. They're very aware of their constraints, and part of my goal is to make sure that the patients who are the beneficiaries of their services have the same kind of knowledge of the constraints in which the doctors work, so they can better partner with the doctors.

My view is that our system doesn't have the resources to provide everybody the quality of care that they aspire toward, so we should tap into this tremendous reservoir of 320 million Americans who have the energy and the ability to act as effective consumers, just as they do across the rest of the economy. So, it's not so much sowing a seed of doubt. It's informing patients so that they can use their intellect, their energy, their experience, and their intuition to team with their doctors to get better outcomes.

And you see that happening in other spheres. For example, at virtually every school in the country, parents are helping teachers by providing additional resources so they can spend more time teaching students. A lot of people are now do-it-yourself folks for home repairs, so they go to centers around the country, they get online videos, and they figure out how to do home repairs. In the medical profession, patients will get better outcomes if they become more engaged consumers.

SH: You advise that "[f]orging a strong partnership with a caring and committed primary care physician is one of the most important first steps you can take in protecting your health." Isn't that easier said, than done? Many of us are forced to see nurse practitioners or physician's assistants instead of ever getting to see a doctor. I know that my son hasn't seen his primary neurologist for years now, and while we very much like his physician's assistant, it certainly has done nothing to strengthen our relationship with his neurologist, and if something traumatic were to happen, that doctor wouldn't know, hands on, much about my son's past few years. How do we go about asserting our need for an attention-giving PCP when the system seems to be moving further and further away from enabling such a relationship?

LM: I am an enormous believer in the value of advanced practice clinicians. Nurses, physician assistants, nurse practitioners—they all have high levels of clinical training. They are under-utilized and can be extremely important participants in a properly configured healthcare delivery system in the future. If you're generally well, and you're regularly seeing a capable advanced practice clinician, you can get excellent care, because those professionals are trained to identify significant clinical issues and refer them to physicians and specialists.

Our experience has actually been very positive with them. My experience with other similar professionals is also very also positive. Every major law firm in the country has a cadre of talented paralegals. There is no dentist's office that functions without effective dental hygienists. I'm a big fan of it because I've seen it really work. For example, in my personal experience, as I related in The Patient’s Playbook, I had a surgery by the Chairman of Surgery at Yale New Haven, Dr. Rob Udelsman, who had, at every step of the way, Patricia Donovan, RN, who has been his right hand in doing these things for 15 or 20 years. They are a team working together; that enables them together to provide people with the highest quality care. I had a very complex surgery, and although the surgery was done by Dr. Udelsman, the entire experience could not have been as good without Patricia Donovan being at his side. I don't think that moves us away from having an enduring relationship with a clinician; I think it moves us forward.

SH: My husband, who was diagnosed with leukemia mid-summer last year, was mis-diagnosed with three different issues over 3 months, before taking himself to the ER where he was admitted to the ICU and it was immediately apparent that he had an astronomical white blood cell count. A friend, upon hearing this, said that it's not unusual for that to happen because doctors don't look for cancer in an otherwise healthy, moderately young person. But in some cases, it seems, that the new "Google-fication" of self-diagnosing is bringing about a public of paranoids, so if my husband had gone into the doctor asking them to check for cancer because he was feeling rundown, would they have done so? He certainly felt like he was taking charge of his illness by making appointments with his neighborhood clinic, but he never thought it was cancer, so he didn't push for that diagnosis. Shouldn't we be able to trust in the expertise of our medical providers to see what we can't see?

LM: First I have to say, I'm so sorry that your husband had to deal with a misdiagnosis. Sadly, we know that misdiagnoses, delayed diagnoses, incomplete diagnoses—these are major challenges across the healthcare delivery system. The studies that have looked at this problem find that between 40,000 and 80,000 people a year lose their lives because of diagnostic errors. So, I have to say, I'm really so sorry that this happened to your husband. As we discuss this though, what I'm concerned about is the appointments at the neighborhood clinic.

There are two ways to reduce the probability of getting a misdiagnosis. One is to trust your instincts. We all are in touch with our bodies, and we know when something seems to be more significantly wrong than it's ever been before. Maybe it's a level of fatigue that you haven't experienced before, an abdominal pain that maybe you've experienced before but is stronger now and has been going on longer. Or headaches that are happening more frequently, and have greater pain, in ways you haven't felt before. If you have those things, what you need to do is trust your instincts, listen to your body, and take action on it. If the physicians you're seeing are telling you, “It's all between your ears, there's nothing to worry about,” or “Your gut is wrong,”—then go to additional physicians in a timely fashion until you get a diagnosis that sounds right to you.

The second thing to be discussed here is the notion of a neighborhood clinic. Particularly when it comes to primary care, I believe very deeply that you need to have a strong and enduring relationship with an individual physician. That person can see you over time and have the benefit of observing changes in who you are and how you're functioning. They'll be looking at you, and they'll say, "You were here 12 months ago, and it looks to me like you've put on some weight,” or “you look particularly pale right now,” or “you're generally energetic, and you’re looking down and depressed, what's going on? Talk to me." Those kinds of observations about who you are holistically can make a difference. They can enable a primary care physician to exercise his or her clinical intuition and identify potentially serious issues earlier.

If in fact your husband had such highly elevated white blood cell counts, he probably had some symptoms. If he had a strong and enduring relationship with a primary care physician, that physician likely would have recognized those symptoms and/or those lab results as being aberrant, and she or he would have perhaps ordered additional blood work, and made the referral to a hematologist, which is what the first person who saw your husband should have done.

You should believe in the capability and the competence of your physicians, but if you don't—if you have reservations about them—you need to change physicians. But, even if you believe in your physicians, you need to respect your perceptions of your health and your intuition. So, if you're feeling off, even in a vague way, and the physicians that you're seeing are incapable of giving you a diagnosis or developing a treatment that addresses it, I suggest you take yourself to a higher level of expertise. Get in touch with an academic medical center, figure out which therapeutic area might be most appropriate, and make an appointment. Bring your medical records and have someone with fresh eyes look at what's going on.

SH: I know this is a tricky question, but I started to wonder, as I read your book, how much someone who doesn't have a lot of schooling or a lot of money or maybe has very little exposure to healthcare can benefit from the advice in this book. Most of the anecdotes included have to do with people who instinctively know something is wrong with the diagnosis or advice they've received. And the concept of concierge health care often feels like something only accessible to people with a lot of wealth. Unfortunately, we aren't all able to come at our health from such an advantageous position. What can that person who will need help navigating the system do to insure he or she gets good care? I think the answer to that question might lie in how you've written this book. What I like so much about it is the simplicity with which you lay out the questions to ask, and then you reiterate those questions, in checklist form, at the end of each chapter. How can we educate people to learn these methods?

LM: The first thing is, you need to be in touch with your own sense of well-being. We all know when we feel fine and we all know when we really feel off. When we feel off for a sustained period of time, we need to find the courage to act on that.

We all hold our physicians in high regard because they work very hard to intervene in life-saving ways and they work under enormous time, emotional, and financial pressures. They deserve our respect. So, we are reluctant to challenge them. When you're feeling unwell, it's hard to summon the courage to act, because approaching physicians and dealing with the healthcare system can seem overwhelming.

The reason I wrote The Patient’s Playbook is to encourage people to do three things: The first is to be in touch with your own sense of well-being. Second, if you find that there's something that isn't going well from a medical perspective, to summon the courage to act on it. And third, to know that there are practical, step-by-step things you can do to access the best medical care. My goal is to provide practical step-by-step guidelines that anyone can follow to get the very best from our healthcare system.

In fact, the book is just one part in a comprehensive patient revolution! We’re launching “The No-Mistake Zone” podcast so all of my guidance and tips are right there on your smartphone every week; I'm giving speeches around the country and teaching people the steps to getting better care in every medical situation; we're working on a documentary about medical error—which claims the lives of nearly 400,000 Americans a year. My goal is to create a national movement to energize and activate every single American to learn how to be a more effective health care consumer, so they can partner with their physicians and get the very best medical care. We all deserve that.

SH: What is the value of obtaining your medical records, and why isn't that a standard part of care?

LM: Physicians are the only respected professionals in our society who are routinely asked to provide consultative services based on incomplete information. Lawyers, advertising agencies, strategic planners, accountants, and other professionals won't do it. In order for professionals to provide their clients the level of excellence that they all aspire for, they need to have comprehensive information about the relevant history.

It's just unfortunate that medical records have always been in dog-eared paper files in giant filing cabinets that make it difficult to share them. That's one of the reasons why people do not get the quality of care that they deserve, why the costs are so high, and why there are so many mistakes being made. It's really important for each and every person to have all of their medical records from all of their physicians, imaging centers, and hospitals.

By federal law YOU have a right to your medical records. They belong to you! And there are many good reasons to collect them. One is you want to make sure they're accurate. At Private Health, we do that for every client. And all too often, somebody else's imaging or other result is included in a patient’s file. We also find incorrect information—you have an allergy to penicillin, and you're listed as having an allergy to aspirin. Mistakes happen, we’re all human. So one reason to collect your medical records is to ensure that they're accurate.

Second, you can’t assume that the specialists you see will have all of your records. And it’s crucial that they do, because it gives them the benefit of having your full medical history—making it easier for them to diagnose you, to avoid mistakes in your care, and to develop a treatment plan that's informed by everything else that you've experienced. For example, maybe you're on a number of drugs that cumulatively have a side effect that’s creating your symptoms. If you don't provide a list of all of the medications to a physician, you're denying him or her the opportunity to come up with that diagnosis and figure out the effective treatment.

You are a moving picture; you're evolving all of the time. As you get older, things change. Your medical records will give your physicians not only a snapshot of what's going on today, but how your health has changed over time: your blood pressure, cholesterol, weight, all sorts of lab measures, and changes in your electrocardiograms. Maybe an abnormal finding has been that way for years without generating symptoms, which is very different from detecting something that has just changed and needs to be investigated more carefully. By having your medical records, you're giving your physicians the information they need to do a better job for you.

And there's another benefit: You can look back and see what's gone on in your health. Are you on more medications than you were 10 years ago? Have you gained a pound and a half a year for 10 years, which means now you're 15 pounds heavier? Has your blood pressure gone up or down? All of those things are important for you to understand, because it's all too easy to ignore a couple-percent change every year. But you may look back over 10 years of records and realize, "Oh my, I'm now totally out of shape, I've got to change my lifestyle, to restore my fitness, reduce my cardiovascular risk, and get my energy back."

SH: When people are ill is often when they are feeling their least capable. How does a person force themselves to jump through hoops and be stubborn in finding the right specialist, or "Who is/are the best doctor(s) to administer that treatment/perform my surgery/oversee my therapy?" And, I suppose it must be asked, does it take money to find that person, or can that right doctor be found within a patient's insurance network?

LM: There's no question that when we are sick, we feel vulnerable. You may feel devoid of energy. And your brain might be foggy if you're experiencing pain or you are on medication. It’s not easy to navigate our complicated healthcare delivery system, even more so when you’re not at the top of your game. In The Patient's Playbook, I recommend that everybody have a quarterback to help when there is a serious medical issue. That’s somebody who's going to be your advocate and help get you through the issues you need to confront in order to get well again.

And no matter who you are, you should not be in a hospital without a quarterback. Hospitals are very complicated places. An enormous amount of information is being transmitted about you, while at the same time, staff is transitioning through your room, and a lot of very important decisions about your care and treatment are being made. It’s extremely hard to make sure that each and every care provider—whether it's a physician, a nurse, or a technician, somebody giving you physical therapy, administering drugs, or scheduling you for a diagnostic evaluation—be fully informed about your history and not confuse you or your history with somebody who might be in the bed next to you. Which is why you need to have someone with you to ask questions before any medication is administered, to check with the doctors before anything about your care is changed, and to ensure that you don't have to exert more of your energy to keep everybody informed and making the right choices.

Virtually everybody has someone in their life—or, perhaps, a collection of people—who can be their quarterback. Quarterbacks are people who can help you do so many things, including: a) do research to help you understand the array of treatment options in front of you; b) help you with the logistics of scheduling appointments; c) obtain any test results; d) ensure that durable medical equipment is there for you when you get home; e) make sure your prescriptions are refilled and taken at the right times; f) help you think through the tough choices so you're not out there feeling alone. And, very importantly, quarterbacks are people who really are in harmony with you emotionally, and who know when you're down, and when you're up, who can get that smile back on your face because they know the exact words to say, or the exact time to give you that hug, or tell a joke. Those are the people that you need to harness, to bring together as your support team, to get you through this. Nobody should have to go through a serious illness alone. It's simply too hard.

I think I just answered your last question here, too! But let me quickly revisit the part of this question that references money. Does it take more money to find the right in-network doctor? A lot of people believe that the best physicians and treatments are reserved for the 1-percenters. While this can be true across most of the economy (the best hotel rooms, airplane seats, food, wines, and clothing are reserved for the 1-percent), in medicine it’s simply not the case. I've worked with the wealthiest people in the world, and I've seen the care that they've gotten before I've become involved. It's no better than the care that anybody else gets. In my experience the very best medical care is reserved for the people who are the most capable and effective healthcare consumers regardless of their net worth. Why does that happen? Let me explain.

Most every insurance company includes the major academic medical centers in the major cities within their coverage networks. (A small percentage of insurance plans on the individual exchanges feature narrow-network plans, which may not allow you to go to a major hospital). If you live within an hour or two of one of the top 15 or 20 cities in the country, in each of those cities there are one or more major academic medical centers, which are likely to be in-network. If you go to that center it won't cost you any more than it would to go to a smaller community facility.

And if you have a significant or challenging medical issue, my strong recommendation is to go to one of the major academic medical centers near you, where they will have the requisite reputation, expertise, and culture to provide excellence in care for complicated procedures. For instance, it you need an aortic valve replacement, a heart transplant, esophageal cancer surgery, or brain surgery, those are technically complex things to manage, and they should only be done in centers where they do a lot of them, and they study them, and they report on the results, and they do a better job each and every time because that is what they're made to do. For most insurance coverage—including Medicare and almost all employer-sponsored coverage—it will not cost you more to identify and gain access to the top physicians in those facilities.

SH: I have been in situations when one of my family members is in the hospital and I'm astonished that there seems to be no continuity of information sharing. I've often thought there should be hospital provided patient advocates, perhaps like doulas, who are there to assist and speak for the needs of the patient or family as needed. That doesn't seem like something insurance is going to pay for, so you advise that someone other than the patient become "quarterback" during treatment. In our case, I'm my son's quarterback, and my mother-in-law is serving as my husband's quarterback. What are the benefits of having a support person like this at hand?

*Please see Leslie’s answer to question 7, re: quarterbacks*

ABOUT THE AUTHOR

Leslie D. Michelson is the founder, chairman and CEO of Private Health Management, a unique patient-focused company dedicated to helping individuals and corporate clients obtain exceptional medical care. You can learn more about Leslie, The Patient’s Playbook, and “The No-Mistake Zone with Leslie Michelson” podcast at www.patientsplaybook.com.

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