You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to
by Trisha Torrey
Langdon Street Press
Patients are frustrated by many obstacles to getting good medical care. From too little time with their doctors, expensive drugs with difficult side effects, treatments that donít work well and moreÖ Part exposť and part toolkit, You Bet Your Life! will help them get the good care they deserve.
Great medical care is available for those who know how to pursue it effectively. You Bet Your Life! empowers patients with the tools and confidence they need to find their best medical outcomes.
Part exposé and part toolkit, You Bet Your Life! explains the dysfunction of the health care system – why doctor appointments are so short, why drugs are so expensive, why treatment may not work well – in effect, why patients continue to get sicker while insurers, pharmaceutical companies and other practitioners and industry professionals get richer.It then teaches patients and their caregivers how to use those dirty little secrets of the health care system to get the improved medical care they deserve.
Trisha Torrey knows the dysfunction well.She was diagnosed with an aggressive, terminal cancer and told she had only a few months to live.She made plenty of mistakes herself at first. But five years later she has “recovered” quite nicely, parlaying her odyssey into advice for others.
Today she writes and speaks internationally on patient empowerment topics. Trisha is a newspaper columnist, a radio talk show host, the expert in patient empowerment for About.com (owned by The New York Times) and has been quoted by The Wall Street Journal, U.S. News and World Report, CNN, NPR, PBS and many other media outlets.
Now she has put her knowledge and expertise into this manual for smart patients.You Bet Your Life! will empower patients to get the health and medical care they deserve.
Why Do Patients Make So Many Mistakes?
Samís 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 youíd leave your car for a few more hours to let him work on it again. If he couldnít 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 wasnít what we expected.
Why donít 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 ďDoctorĒ and he calls us by our first names.
Yes. Thatís intimidating. When we look at it this way, it even seems wrong. Hereís 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 donít.
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. Itís 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, ďDo you have any more questions?Ē
Or, perhaps your doctor is like my former primary care doctor, who declares, ďIíll be right back,Ē and never reappears.
Then thereís ďdiagnosis paralysis.Ē Itís that point where the doctor tells you what your diagnosis isóand you freeze because youíve heard frightening words like ďcancerĒ or ďchronicĒ or ďyouíll need surgeryĒóor any of the other terrifying, life threatening words that make you tune out every word he says after that. Of course, if you donít hear the rest, you canít possibly ask intelligent questions.
Or what about a patient who is told thereís nothing really wrong with her. ďItís all in your head,Ē she is told. Then she thinks there is something wrong with her head, not her body. In fact what she doesnít realize is that this is the default statement a doctor uses when he canít figure out whatís wrong with a patient. Itís 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 donít 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 donít think of them in quite the same way.
We rarely ask for our money back if we donít get well. When faced with continuing illness, or if we donít heal correctly, we think itís because there is something wrong with us. We donít stop to consider that the problem might have been substandard care.
We are disengaged.
The Domino Effect of Disengagement
What most of us donít realize is that our disengagement creates a domino effect:
When we donít communicate well with our doctors and provid¨ers, making sure weíve 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 weíve been told.
When we donít ask questions, then we donít under-stand fully what is wrong with us. Further there is a possibility we have not been diagnosed correctly to begin with.
When we donít understand fully what is wrong with us, then we are afraid or unprepared to ask questions about treatment options. We donít 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 didnít 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
If you donít stick up for yourself by taking charge of your situation, or if you donít comply with decisions made about your treatment, or for some reason donít get the care you need, then you get sicker, or you donít heal, or you die.
However, if your doctor doesnít 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 nightís sleep.
And if you donít 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.
Itís 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 ďemPatient,Ē 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, ďDo you have any more questions?Ē an emPatient replies, ďYes I do. Please give me a few more minutes.Ē
When the doctor tells an emPatient she has Diagnosis X and it needs to be treated by doing Treatment Y, the emPatient asks, ďWhat else can it be?Ē followed by, ďAre there other treatment alternatives?Ē
Itís not easy. But itís 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 doctorís med-speak is all about. Letís take a look at this example:
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 donít understand.
Today I stopped him! I told him I didnít understand what the word ďidiopathicĒ 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. Iím usually afraid to ask ques-tions because I think it will make it sound like Iím 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. Iím glad I did. Thank you!
Chances are that Francineís doctor didnít realize he was using words she didnít understand. Most doctors want their patients to understand clearly. They use their medical words day in and day out, so it doesnít occur to them that we donít 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. Iíd wager that if we asked Francineís doctor whether it bothered him that Francine stopped him, he would say he was glad she asked.
Hereís another way to think about sticking up for yourself:
Suppose your child was very sick and wasnít 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 wouldnít stand for a momentís carelessness. You would be assertive and demand she get the best treatment available. You wouldnít allow any provider to intimidate you. You wouldnít take a momentís 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 ďEmPatientĒ 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, itís prudent to begin with a definition and a set of guidelines.
As an emPatient, youíll 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.
Weíll 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. Isnít 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 Doís
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 isnít 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 doesnít 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 doctorís 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 Doníts
If you are reading between the lines, youíll see that I donít have much patience for the professionals who arenít 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, Iíll explain how the American healthcare system has degenerated and why that has so negatively affected the care we receive. Youíll see that itís easy to get bitter and cynical.
But bitterness and cynicism donít feel very good, and certainly donít improve anyoneís health. And thatís what this book is about: Using the reality of todayís healthcare system to improve your chances for good care.
Knowing that, here are a few doníts for emPatients:
1. Try not to get frustrated, and donít 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 youíve got the hang of it, someone will throw you a curveball and youíll have to readjust your approach. But, as a bona fide emPatient, youíll know what you need to do next.
2. Donít 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 donít 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:
ē 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 foróa spouse, child, parent, any loved one, friend or person for whom you wish to advocate.
ē You wonít 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.
ē 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, youíll 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, itís time to figure out why patients make the first mistakeóthat is, thinking the American healthcare system is focused on patients. If you think thatís true, then your eyes are about to be opened. Opened wide.