Excerpt
Why Do Patients Make So Many Mistakes?


Sam’s car engine made a strange squealing noise each time he took it out on the highway. It drove him crazy, so he reluctantly dropped it off with his favorite mechanic in hopes of getting it fixed.
A few hours later, he got a call that his car was ready. Sam paid the $580 bill, and drove off with his newly repaired car.
The moment he pulled into the center lane of the highway, that familiar squeal started all over again.


If you were Sam, what would you do?
At the very least, you would return to the garage and talk to the mechanic. More likely you’d leave your car for a few more hours to let him work on it again. If he couldn’t fix it, you might ask for your money back and head on down the road to find someone else to perform a squeal-ecktomy. But you certainly would not just accept that you had just paid for services not rendered. You would expect far more from the mechanic.
And yet, most of us, when faced with a parallel situation from our doctor, just accept that our care wasn’t what we expected.
Why don’t we hold our healthcare providers to task the same way we would our auto mechanic?
There are a number of reasons, some of which are rooted in our upbringing, in the traditional way we have interacted with medi¬cal professionals, some of which have evolved as the system has shifted into its current anti-patient reality.
Many of us are intimidated. The doctor has all that education, is such an expert (makes so much money, lives in such a big house, seems so superior).
We wait and wait and wait in the exam room for the doctor to come in. We sit on the exam table, perhaps undressed, covered with a paper gown. The doctor arrives, fully clothed, standing taller, loom-ing over us. We call him “Doctor” and he calls us by our first names.
Yes. That’s intimidating. When we look at it this way, it even seems wrong. Here’s what happens next:
We begin to explain our symptoms, when the doctor interrupts. In fact, one study showed that doctors interrupted their patients an average of eighteen seconds into an appointment1. Once the doctor interrupts, we become too nervous to bring the conversation back to where we need to, at the point before it derailed. So we don’t.
We feel rushed. So often patients complain that their doctors used to spend time with them, listen to them, even show some empathy. But today that doctor is rare. It’s not your imagination if your doctor seems more curt and hurried than ever before.
In this classic example, the doctor is halfway out the door of the exam room, facing the hallway, and asks, “Do you have any more questions?”
Or, perhaps your doctor is like my former primary care doctor, who declares, “I’ll be right back,” and never reappears.
Then there’s “diagnosis paralysis.” It’s that point where the doctor tells you what your diagnosis is—and you freeze because you’ve heard frightening words like “cancer” or “chronic” or “you’ll need surgery”—or any of the other terrifying, life threatening words that make you tune out every word he says after that. Of course, if you don’t hear the rest, you can’t possibly ask intelligent questions.
Or what about a patient who is told there’s nothing really wrong with her. “It’s all in your head,” she is told. Then she thinks there is something wrong with her head, not her body. In fact what she doesn’t realize is that this is the default statement a doctor uses when he can’t figure out what’s wrong with a patient. It’s belittling and intimidating.
Further, we are removed from payment for healthcare services. Sam returned to his mechanic because he had paid directly for servic¬es he decided were not complete. We don’t think of our healthcare the same way we think of auto repair because at the end of it, we usually make no direct payment. Our payers, like health insurance companies, Medicare, or Medicaid, make that payment. Granted, we do pay premiums, deductibles and co-pays, but we don’t think of them in quite the same way.
We rarely ask for our money back if we don’t get well. When faced with continuing illness, or if we don’t heal correctly, we think it’s because there is something wrong with us. We don’t stop to consider that the problem might have been substandard care.
We are disengaged.

The Domino Effect of Disengagement
What most of us don’t realize is that our disengagement creates a domino effect:
When we don’t communicate well with our doctors and provid¬ers, making sure we’ve explained everything that needs to be
explained, then the doctor talks over our heads, interrupts, or rush¬es us through an appointment. We run the risk of not saying every¬thing we need to say, then not understanding what we’ve been told.

When we don’t ask questions, then we don’t under-stand fully what is wrong with us. Further there is a possibility we have not been diagnosed correctly to begin with.
When we don’t understand fully what is wrong with us, then we are afraid or unprepared to ask questions about treatment options. We don’t even realize that there are other treatment options that have not been explained.

Which means we may not be receiving the right treat¬ment or we may not be participating in treatment the way we should be.
Finally, by not holding our providers account¬able for their role in improving our health, the system continues to break down. Next time around, if we live long enough, our care will be even less helpful.

And this entire domino effect happens simply because we didn’t ask a question at the start, perhaps because we had a problem as simple as not understanding one big, medical word, and probably because we were, simply, intimidated.
No One Has a Bigger Stake in the Outcomes than We Do
Consider:
If you don’t stick up for yourself by taking charge of your situation, or if you don’t comply with decisions made about your treatment, or for some reason don’t get the care you need, then you get sicker, or you don’t heal, or you die.
However, if your doctor doesn’t provide the care you need, he gets his paycheck anyway, then goes home to his family, eats dinner, helps his kids do their homework, pays the bills, watches TV, plays a game or reads a good book, then goes to bed and gets a good night’s sleep.
And if you don’t visit the doctor, or get the tests you need, or fill prescriptions, then your payer makes higher profits by not paying for care on your behalf.
Now you tell me. Who has the biggest stake?
If we are to begin getting the healthcare we deserve, then we need to shift this expectations paradigm, the reason we make so many mistakes.
It’s time we take charge of our healthcare ourselves, just like Sam would take care of his car.
What an EmPatient Does Differently
Just as we were raised to do, just as we have learned to do, just as many of our providers want us to do, most patients passively wait for good healthcare to come to them.
In contrast, an empowered patient, an “emPatient,” works proac-tively to get the healthcare she deserves.
For example, when the doctor, on the way out the door of the examination room asks, “Do you have any more questions?” an emPatient replies, “Yes I do. Please give me a few more minutes.”
When the doctor tells an emPatient she has Diagnosis X and it needs to be treated by doing Treatment Y, the emPatient asks, “What else can it be?” followed by, “Are there other treatment alternatives?”
It’s not easy. But it’s also not too difficult. It mostly requires a shift in your mindset, a change of your habits. But there are a few ways of looking at this new way of doing things that will help you understand the approach.
One of the first lessons is self-esteem. We need to begin sticking up for ourselves.
When I first began this shift in my own attitude, it was, in my estimation, a matter of life and death. Chemo or some other treat-ment? It never occurred to me the diagnosis had been wrong.
In your case it might be more or less intimidating. Maybe you simply need to understand what the doctor’s med-speak is all about. Let’s take a look at this example:
Dear Trisha,
I wanted to tell you what happened today. My doctor is a very good doctor. He has always taken good care of me and my husband. But he always uses big words, medical words that I don’t understand.
Today I stopped him! I told him I didn’t understand what the word “idiopathic” meant. I thought he was insulting me! He stopped and explained it to me, and now I understand it. I even took the time to write it down.
I was really proud of myself. I’m usually afraid to ask ques-tions because I think it will make it sound like I’m not very smart. But every week on your radio show, I hear you stop the doctors and ask them to explain what those big medical words mean. That made me brave enough to ask, too. I’m glad I did. Thank you!
Sincerely, Francine
Chances are that Francine’s doctor didn’t realize he was using words she didn’t understand. Most doctors want their patients to understand clearly. They use their medical words day in and day out, so it doesn’t occur to them that we don’t all know what they mean.
Francine bravely took a step forward by stopping her doctor and asking. She was rewarded with an answer she understood. I’d wager that if we asked Francine’s doctor whether it bothered him that Francine stopped him, he would say he was glad she asked.
Here’s another way to think about sticking up for yourself:
Suppose your child was very sick and wasn’t getting the medi¬cal attention she needed. What if your doctors were rushing you out the door, or she was given the wrong dose of medicine, or her records were lost or, God-forbid, she was misdiagnosed. What would you do?
If you have been a parent of a young child, you know that you would be like a mother tiger protecting her young. You wouldn’t stand for a moment’s carelessness. You would be assertive and demand she get the best treatment available. You wouldn’t allow any provider to intimidate you. You wouldn’t take a moment’s grief from an insurance company. You would take care of your child by taking care of the situation.
Do you, or your adult loved ones, deserve any less?
The “EmPatient” and Some Rules of Engagement
It seems simplistic to tell you to begin sticking up for yourself in order to get the care you need and deserve. If it were truly that easy, this book would be much shorter!
In fact, there are so many aspects to successfully navigat¬ing our care, it’s prudent to begin with a definition and a set of guidelines.
As an emPatient, you’ll learn to shift your mindset from being the beneficiary of a benevolent and paternalistic system to being a proactive and responsible participant, reaching out and command¬ing the respect and service you deserve.
We’ll begin with a set of Rules of Engagement for EmPatients.
Rules of Engagement are those guidelines developed by coun¬tries to make war politically fair. Of course, developing such rules would indicate that I believe we emPatients are in a war with the healthcare system. I do, in a way. In a war, the participants are
battling for their lives and their futures. Isn’t that also true for patients?
Applying these rules of engagement while using the tools described in this book will provide you, as an emPatient, with the foundation you need for the care you deserve.
Some EmPatient Do’s
An EmPatient:

1. Has a basic understanding of how American healthcare works, and how it too often precludes her from getting the care she deserves. She then uses that knowledge to improve the care she pursues.

2. Understands the points of view of all the participants, includ-ing doctors, other healthcare providers, insurance companies (payers) and others who might affect the care she receives.

3. Realizes that creating win-win situations is the best approach. She is respectful to her providers, and commands respect in return.

4. Takes responsibility for her own healthcare decisions, her own research about her possible health or medical problems, and compliance with those decisions.

5. Is organized. She keeps a notebook, files, copies of all medical records, phone numbers, contact names and more as she tran¬sitions through all healthcare activities. She understands that every piece of information she gathers along the way may have an impact on the care she receives later.

6. Is proactive far more often than she is reactive. She isn’t afraid to do things differently from how they have been done in the past. She looks at a problem or hurdle and figures out strategi¬cally how to get beyond it. She doesn’t accept ambiguity.

7. Creates a partnership with her doctor and other providers to improve her chances for good medical outcomes, realizing that the partnership is fifty percent the doctor’s education
and experience, and fifty percent her body and its medical problems.
8. Anticipates problems and pitfalls and prepares for them ahead of time.

9. Realizes that prevention is sometimes the best approach.

10. Shares what she has learned with others, understanding that supporting other patients and caregivers is beneficial to all of us.

A Few EmPatient Don’ts
If you are reading between the lines, you’ll see that I don’t have much patience for the professionals who aren’t doing their jobs well, no matter what their excuses might be. But overall, I do have empathy for most providers because I know they are being asked to do their jobs with at least one arm tied behind their backs.
In later chapters in this book, I’ll explain how the American healthcare system has degenerated and why that has so negatively affected the care we receive. You’ll see that it’s easy to get bitter and cynical.
But bitterness and cynicism don’t feel very good, and certainly don’t improve anyone’s health. And that’s what this book is about: Using the reality of today’s healthcare system to improve your chances for good care.
Knowing that, here are a few don’ts for emPatients:

1. Try not to get frustrated, and don’t ever give up. Understand that becoming an emPatient is a little like nailing JELL-O to a tree. It will be impossible to anticipate every problem you might encounter. Just when you think you’ve got the hang of it, someone will throw you a curveball and you’ll have to readjust your approach. But, as a bona fide emPatient, you’ll know what you need to do next.

2. Don’t get too aggressive. Realize that there is a difference between someone who is a successful emPatient and some¬one who has taken it too far. Stories of people who became too aggressive and let their anger overtake their better judg¬

ment can be found in abundance on the Internet. In some cases, those patients have been blackballed. They cannot find care because no provider will treat them. Please don’t get carried away so that you, too, are denied the healthcare you need.
A few more points to make before we get started correcting those mistakes most patients make:
• The ideas you find here are worthwhile for empowered care¬givers, too. While this book focuses on you as the patient, you can translate the advice to anyone you might be caring for—a spouse, child, parent, any loved one, friend or person for whom you wish to advocate.
• You won’t find medical advice here. This book is about navigat¬ing a faulty system. Your medical advice should come from the providers you choose to partner with.
• This book tackles the hurdles faced by patients primarily for

physical health problems. While you may want to apply what you learn to a mental health situation, some of the background may be different, so the approach may not work. For example, you’ll learn in Chapter Fifteen that you have a right, by law, to obtain copies of your medical records. In some mental health care cases, that is not always true.
With all that in mind, it’s time to figure out why patients make the first mistake—that is, thinking the American healthcare system is focused on patients. If you think that’s true, then your eyes are about to be opened. Opened wide.