doctors reveal how a healing partnership could save

companion book to the public television series

A doctor just listening is as important to your diagnosis as hi-tech tests. Understanding you as a whole person – mind, body, and spirit – is the key to effective treatment. THE NEW MEDICINE introduces inspiring doctors and patients using this knowledge to take Western medicine to the next level.

the new medicine

doctors reveal how a healing partnership could save your life

“We physicians love to cure but if we can’t cure, we ought to understand that we’re engaged in healing, and healing involves caring, which is at the root of the practice of medicine.” Dr. Ralph Snyderman, Duke University

Dr. Jerome Groopman, Harvard University

“We must get people to feel impassioned and empowered about their own life – to decide that life tastes better than steak. People, say, “Give me the drugs, and pass the bacon and eggs.” But just taking the drugs never gets to the root of the problem.”

Ronald H. Blumer & Muffie Meyer

“Without partnership with the patient a doctor is driving blind because treatment decisions have to be sculpted for that individual. For some patients it can make the difference between life and death. ”

Dr. Mimi Guarneri, Scripps Center for Integrative Medicine

“It’s not an either/or. We can be as humanly sophisticated as we are technologically sophisticated. Dr. Arthur Kleinman, Harvard University

Ronald H. Blumer & Muffie Meyer FOREWORD BY DANA REEVE



acknowledgements Middlemarch Films 132 West 21st Street New York, NY 10011

http://www.thenewmedicine.org Library of Congress Control Number: 2006921183 ISBN 0-9778299-0-1 Design: Amy Bernstein Copyright © Ronald H. Blumer 2006

Filmmaking is a collective effort and so in truth is book writing, particularly a book of this nature that relies so heavily on the thinking and footwork of others. The authors would like to thank Jennifer Raikes, a producer of the film and the editors and coproducers, Sharon Sachs and Donna Marino, who had the massive job of first organizing the many hours of interviews. Eric Treiber provided images from the videos as well as helping in innumerable other ways and Dianne Cleare supplied invaluable research for this book. My brothers, Dr. Herbert Blumer and Joseph Blumer, and Adam Symansky gave the book and film helpful first impressions. We also gratefully acknowledge the enormous contribution of Dr. Mack Lipkin, who generously gave of his time, energy, and especially of his wisdom. The directors of photography — Brett Wiley Don Lenzer, Bob Elfstrom, Maryse Alberti, Christine Burrill, John Kelleran, York Phelps, Greg Andracke, Boyd Estus, and Tom Hurwitz — it is their fine images which illustrate this book. To our ever supportive and intelligent executive producer Catherine Allen and Gerald Richman, to R.B. Bernstein who first read and proofed the manuscript and provided quiet support, and David Penick who copyedited the text, we owe our many thanks. We would especially like to thank the interviewees in the television series and the book who gave us their valuable time and special knowledge, and the patients we filmed and interviewed who allowed us to intrude into their lives. We owe a huge depth of gratitude to The Bravewell Collaborative, which supported the New Medicine project in so many ways and continues to support many of the medical projects mentioned in these pages and the television series. In particular, we acknowledge Penny George, Christy and John Mack, Ann Lovell, and William Sarnoff for their leadership in the production of this book. The television series and book would not have been possible without the extraordinary generosity of WebMD Health Foundation, The George Family Foundation and Bill and Penny George, The David & Lura Lovell Foundation, The Christy and John Mack Foundation and Christy and John Mack, The Simms and Mann Family Foundations, The Bernard Osher Foundation, Fannie E. Rippel Foundation, William Sarnoff, Ruth Stricker and Bruce B. Dayton, Wyeth, The Globe Foundation, Rudolf Steiner Foundation, Definity Health, Colburn and Alana Jones, Michele and David Mittelman Family Foundation, Complementary Care Foundation, The Fullerton Foundation, and The Arnold P. Gold Foundation. Finally, we would like to thank Diane Neimann whose faith in us made everything possible and, of course, Emma Sarah Blumer who makes everything worthwhile.

acknowledgements | i

foreword by Dana Reeve For more than a decade, the world of medicine has been a large part of my life, first because of my husband, Christopher Reeve’s spinal cord injury and now because of the challenges I myself face. I have been diagnosed with lung cancer and am undergoing treatment. Over the years, I have been very privileged to work with many wonderful doctors and caregivers, and we have had access to the most advanced hi-tech medical care available anywhere in the world. I owe a lot to modern Western medicine. But it has also become clear to me that hi-tech medicine, with all its wonders, often leaves out that allimportant human touch. For many, going to the doctor or to the hospital has become an assembly line of tests and procedures. And often lost in this examination of the hearts and the kidneys and the blood chemistry are the deeper needs of the person suffering from the illness. Illness, alas, is a great teacher, and one of the things I’ve learned is that the process of healing involves both the body and the mind. Your emotional state has a tremendous amount to do with sickness, health, and well-being. For years, my husband lived on, and because of, hope. Hope continues to give me the mental strength to carry on, but also, I am convinced, hope very directly influences my physical health. Doctors know this of course, but they are wary about how to apply it to the practice of medicine. For some, this kind of thinking represents the “New Agey” world of alternative medicine, and they view it with suspicion. Doctors speak the language of science and quite rightly demand proof that a treatment is effective. It has been hard to measure the effect of a feeling like hope on the human body. That is, until very recently.

foreword | iii

In this book you are going to read accounts from some hard-nosed scientists who are doing groundbreaking studies of the mind-body connection. Through clinical experience and with hi-tech brain-scanning equipment, they are proving, in the language of science, that our emotional state — our thoughts and feelings — have an enormous influence on physical phenomena as pain, healing and even our ability to fight off infection.

table of contents

You are also going to be privy to the insights of caregivers applying this new understanding to the practice of medicine — therapists who take advantage of all the best that Western medicine has to offer, but who also understand that technology alone is not enough.

foreword

iv | the new medicine

iii

introduction

3

one: to feel

7

two: to listen

28

three: to treat

50

four: why don’t they? (treat us like human beings)

80

five: to heal

90

six: the future of medical care

108

biographies of the interviewees

112

end notes

118

table of contents | 1

introduction I remember when I was in training, the first time that I cried when a baby died. I remember the look of contempt on my chief resident’s face. I learned crying was unprofessional and never cried about a patient again.

RACHEL NAOMI REMEN, M.D. (UNIVERSITY OF CALIFORNIA, SAN FRANCISCO SCHOOL OF MEDICINE):*

There’s something strange in thinking that you shouldn’t cry when a ninemonth-old baby dies. It’s perfectly appropriate to cry when a baby dies. In our training we learn to disavow and separate ourselves from certain aspects of our humanity. And, in our effort to become more professional, we become less effective as healers. How many of us have had this experience? Your appointment with the doctor is at 10 a.m. You sit in a tiny waiting room with your fellow sufferers coughing away. Forty-five minutes late, your doctor, looking at his or her watch, ushers you in for the interview. You try to tell the doctor all of your problems among the interruptions, the phone ringing, and feeling guilty taking up his or her time with of all those poor souls still in waiting room purgatory. You are sent out the door with a prescription or a directive for further tests, vaguely dissatisfied with the encounter.

To avoid delay, please have all your symptoms ready. (Notice posted in a doctor’s waiting room.)

Welcome to the modern world of medicine — an assembly line of tests, pills, and even replaceable parts — amazing technology addressing our every need except perhaps the most crucial: the need to be treated and understood not just as a diseased body part, but as a person. The statistics are shocking. An average doctor’s visit lasts just six minutes. And, while attempting to describe your primary symptoms, you are given on average 23 seconds to respond. Within this narrow window, it is difficult to say what the doctor is hearing or responding to. A well-trained doctor will focus on the symptoms (“When did this start?” “Is the pain in your stomach or your chest?”) but rarely will he or she go beyond to what might seem like mundane details such as “Are you having troubles at home?” or “What kind of chair do you

*For biographies of all the interview subjects, see page 112

2 | the new medicine

introduction | 3

have in the office?” You will be quickly dispatched for the tests and the X-rays and perhaps an expensive scan and the doctor will move on to the next patient and the next set of symptoms. Tragically, many people report similar treatment even when they are diagnosed with a more serious illness. A friend who was being treated for cancer told me about a horrifying but all-too-familiar experience: the doctor casually looked up from the charts and began the visit by saying, “Do you want to die at home or in the hospital?” And if you have to go to the hospital, you are likely to be confronted with the full soul-destroying face of modern medicine. Some doctors and nurses may be understanding and caring, but the moment you are required to put on that hospital gown that doesn’t cover your backside, you are quickly made aware that you are part of a system whose effect is an assault on your humanity. Worse, as Ivan Illich pointed out years ago, because of the inexorable grinding of the wheels of large bureaucracies, a stay in the hospital often ends up making sick people sicker.1

The fabric of medicine has largely unraveled. Time is the most precious commodity for a physician and a patient. You need time to listen, you need time to think, you need time to communicate. You can’t figure out something complicated in an eight-minute visit. You hardly have time to go over blood tests and write a prescription. So it turns out that this factory-assembly-line kind of delivery of medical care, which is “efficient,” and “cost effective,” is antithetical to both the clinical as well as the emotional dimension of medicine. This is not what healing is.

they are stretched to the limit with impossibly large caseloads and considerable financial pressures. They are the ones who must fight a flurry of forms and regulations and complex, ever-changing medical technology every day. Something has to give and often what is put aside is the human, caring side of their medical practice. Insurance companies, government agencies, and managed care organizations that pay the bills are, in part, responsible for this. “A doctor’s time is very valuable,” they may argue. “Empathy costs. We can’t afford it. Besides, given the choice, what do you really want, your tumor shrunk or a pleasant chat with the doctor?“ In effect, all of us — doctors and patients are forced to approach the medical system with diminished expectations.

Our nation’s health care system has lost its way over the last two decades. It has become so enamored with technology and specialization that it has lost sight of individuals and their needs. We must to return to the patient’s comprehensive needs as the center of focus for our health care system.

RALPH SNYDERMAN, M.D. (CHANCELLOR EMERITUS, DUKE UNIVERSITY):

JEROME GROOPMAN, M.D. (HARVARD MEDICAL SCHOOL):

The novelist Reynolds Price tells of how two interns casually break the devastating news that he has spinal cancer as they walk by him in a hospital hallway. “Then they moved on, leaving me as empty as a wind sock, stared at by strangers. As a member of the last American generation reared by the old-time family doctor of endless accessibility and tact, I can expand on the faceless — sometimes near-criminal — nature of so much current medicine. For now, I’ll flag a single question: What would those two splendidly trained men have lost if they’d waited to play their trump card until I was back in a private room? It might have taken the doctors five minutes longer. I wondered how many other such devastating messages they bore that day to actual humans as thoroughly unready as I for the news?”2 What has happened to the practice of medicine? Most doctors are extremely hardworking, compassionate human beings, but often


In producing the TV series, The New Medicine, we have been privileged to talk with hundreds of concerned doctors, administrators, and thoughtful patients. They all have the same message: We must no longer tolerate dehumanized medical treatment. It is just not good medicine. While we all know that an incompetent doctor could harm us, these experts make evident that the impersonal medical care that we all have reluctantly come to accept is bad for our health. In fact, we may be in as great a risk from this inhuman, fragmented care as from medical malpractice. Everyone we talked to was clear about the fact that if you have a serious medical problem you are going to want a doctor with a high degree of technical skill. If you are having a heart attack, you certainly don’t want a doctor who only holds your hand and talks to you about your feelings. You want a doctor who will do everything possible to fix your heart. But you also need a doctor who follows through on all levels, because you are not simply a heart attack but a person with potential emotional, financial, or family concerns having that heart attack. And answering these other needs is as medically necessary as pills and surgery.

introduction | 5

Yes, you want your physician to be highly skilled, to be extremely knowledgeable, in medicine. But in addition to that, you want them to know you as a person. Ideally, you want them to know your illness but you also want them to know your preferences and your values. That’s just good medicine. We are not suggesting that we throw out the baby with the bath water when we emphasize the importance of the doctor-patient relationship. We are saying that human beings are more than just the sum of our physical parts. And all those other aspects of us really do influence our health.

BRIAN BERMAN, M.D. (UNIVERSITY OF MARYLAND SCHOOL OF MEDICINE):

The ideas in these pages are not radical or even new. It is no great discovery that stress can make you ill and lowering stress can help you heal. Everyone knows this. But this knowledge, which is common sense and now scientifically proven is taking many years to result in any real changes in medical practice. Doctors still spend only a few minutes with us, most hospitals are ill-designed, noisy, highly stressful places, and our hands do not get held when we face our lives’ greatest crisis — a serious illness. There is, however, progress. The experts we have talked to are not just brimming with theories but are working each day with patients and directing innovative programs in hospitals and clinics. They point the way to possible new directions for the future of medicine and give important clues to individuals trying to hold onto their humanity in an increasingly dehumanized medical system.

why this book One of the great frustrations in producing a television series is being forced by the demands of the medium to condense the ideas of these many brilliant experts into relatively brief sound bites. You gain drama and impact but, inevitably, some subtlety and nuance and whole sequences must remain on the cutting-room floor. It is therefore with great satisfaction that we are able, once again, to go to the source material and gather together some of the collective wisdom of the extraordinary people we talked to. They pose the problems but they also supply many of the answers, suggesting ways in which both doctors and you, the consumer of this system, can fix the broken culture of medicine.


chapter one

to feel In our culture, and not just our medical culture, we’ve been talked into seeing powerful parts of ourselves as soft. The parts that we see as soft are often the parts that cannot be measured, quantified, replicated or proved. The mysterious, the emotional, the profound, are seen as less valid than the numerical. Many people believe that only things that can be measured are real. I used to be intimidated by people who saw things in this way.

RACHEL REMEN:

My course reminds medical students across the country that medicine is not only a work of science; it is a work of service, and service is a special kind of love. We physicians now have all these shiny toys, scanners, MRIs, oscilloscopes, heart monitors — and so on. The problem is that we are so taken with these technologies that we forget about the emotions, we forget about the people side of things. But the people have never forgotten. They desperately crave that we understand the fact that emotions are important.

ESTHER M. STERNBERG, M.D. (RESEARCH PROFESSOR, AMERICAN UNIVERSITY):

“Yes, it would be pleasant to be treated with compassion by my doctor,” you may say, “But really I go to my doctor to be fixed. I don’t expect compassion from my car mechanic — I just want to be able to drive to work.” Similarly, if I come into my doctor’s office gasping for breath, I want my bronchial tubes repaired. And quickly! It would be nice to have a doctor who holds my hand and feels my pain but really I want what ails me to be fixed.

I have patients who tell me, “I just want a great surgeon, let him be technically competent. He doesn’t have to be nice, he can be a bully. I don’t care if he has an awful bedside manner.” I warn people to be very hesitant about choosing such a doctor. How is he going to treat you when you wake up from the anesthetic after surgery? You’ll have to be seeing him for the week that you are in the hospital. And how is he going to deal with you in the follow-up? And how are you going to deal with him?

ARTHUR KLEINMAN, M.D. (HARVARD UNIVERSITY):

chapter one: to feel | 7

I grew up in an era of scientific medicine and I am a scientist. I think CAT scans, MRIs and DNA sequencing, and the genome project are all wonderful and very important. The trouble is that emotions were seen as sort of soft and squishy, something that should be pushed to the side.

JEROME GROOPMAN:

There is no going back. We are going ahead into a world that’s going to be dominated by technology to a greater degree even than we have today. And I think every biotechnological development is crucial and potentially important. I have a deep concern, however, that at the same time that we are enabling doctors to become technologically effective we are disabling them from being humanly compassionate and responsive. I don’t think that it should be an either/or. There is no reason why we can’t be as humanly sophisticated as we are technologically sophisticated.

ARTHUR KLEINMAN:

Of course, it is not news to medical researchers that the mind affects the body. When people get embarrassed, they blush. A thought, a mental process, causes a physiological reaction, what doctors call cutaneous blood flow, which we can see as a reddening of the face. Someone sees a large bear coming at them in the woods and their blood pressure and heart rate go up. The skepticism that Esther Sternberg and others encountered came when she began to investigate the more fuzzy area of the relationship of our mental state to sickness and health. Doctors would never believe the painfully unmarried Adelaide in the Broadway musical, Guys and Dolls, when she laments that “just from waiting around for that plain little band of gold, a person could develop a cold.”

The news in medical research, along with all the amazing drugs and procedures, is that the mind is connected to the body. How you feel — your emotions, your state of mind — can dramatically influence health and sickness. Doctors must approach you as a complete human being, not as a defective heart or a malfunctioning kidney, not just to be nice but because it has been proven over and over again in respected scientific research studies that feeling better can make you better. But, given the prevailing culture of medicine, it will take a lot of convincing to put feelings back into the practice of medicine — to reconnect the mind to the body.

Can we really make ourselves sick because of our emotional state? For thousands of years, people believed that stress could make you sick, that believing could make you well, that your social world affects your health. These are things your grandmother told you. But, until very recently, the scientific and medical community did not believe these concepts. They could not see how something as ephemeral as a thought or an emotion, something that is out there in the ether, something that they could not see or measure, could affect something as concrete as health.

ESTHER STERNBERG:

Physicians really need to understand that the patient’s state of mind is an important factor in determining the outcome of therapy. A lot of physicians won’t buy this. They’ll say that either the person will or will not respond to this or that therapy, this chemotherapy, this monoclonal antibody, et cetera. And I would say, certainly the pure biology, the molecular interactions of the therapy and the diseased tissue is going to be very important. But there is another factor, and that is what is going on in that individual’s brain and their feelings of hope and empowerment. This influences the outcome in ways that we may not understand, but it is an influence. The data is there to support this.

RALPH SNYDERMAN:

When I was a young medical student I viewed the mind-body connection with great skepticism. And, as with most of my biologically based colleagues, I distanced myself as much as possible from notions that stress could make you sick. We didn’t even think about whether belief could make you well — that was so out of our thinking that we didn’t even discuss it. I was brought up in medical school to believe only the biological approaches to medicine and healing.

ESTHER STERNBERG:


Esther Sternberg studies the relationship of stress to that most basic of bodily functions, the immune system — the complex biochemical system in our bodies that fights off germs, viruses, and infection.

The concept that the brain and the immune system talk to each other, that it is a two-way street, that the immune system sends signals to the brain and the brain in turn regulates how the immune system functions, was so revolutionary even as little as 20 years ago that it really wasn’t believed by

ESTHER STERNBERG:


academic physicians and scientists. Those of us who were doing studies in this area were actually disparaged by our colleagues for being a little flaky. I was told, “You’re going to ruin your career by studying this.” It took the advances of cellular and molecular biology in the mid–20th century for us to understand how the immune system worked. Now, with brain imaging, with molecular biology, cell biology, and physiology, we can put all the pieces of the puzzle together, which we certainly could not do even a few decades ago. So the good news is that those very technologies that once obscured the thoughtful, caring side of medicine now can be used to understand how emotions and health are one. The nervous system and the body are intimately connected. The brain has connections throughout the body that are so intense that it is almost beyond description. You cannot get anywhere within the body and not have some nerve sprouts nearby. We know that these little sprouting nerve ends release locally active hormones which are able to affect immune cells and probably many other cells within the body.

RALPH SNYDERMAN:

The connections are there but how exactly does your mind affect your body? Rigorous science requires researchers to show cause and effect. They introduce something new to a system and it changes in a way that they can measure. This sort of scientific testing is used to determine what drugs work and what drugs don’t. The mold from which penicillin is derived was seen to kill bacteria first on a petri dish in a laboratory and then in the human body. Literally millions of people are alive today because of this wondrous discovery. Scientists quite correctly do not rely on folk wisdom but on observations and reproducible experiments. Where is the hard, scientifically measurable evidence that feelings and emotions have a profound influence on our health? An excellent place to start is by examining what is known to medical researchers as the placebo effect.


the placebo — the power of expectations To determine if a new drug is really effective, medical researchers select two matched groups. They give the real drug to one group and, to the second group, they give a sugar pill that looks exactly the same. To eliminate any possibility of the contamination of their results, neither the subjects, nor the staff administering the pills, know which pills are the active ones. This is known as a double-blind study. Experimenters are well aware that either the positive or negative attitude of the pill givers can influence the results of the test. Thus, at the very core of the methodology of this most rigid of scientific experiments is a tacit admission that something else is operating here – that the mind can influence the ESTHER STERNBERG: The Rx symcure. Obviously, the pill and the attitude of bol that starts a prescription was the giver of the pill are a package. As we an ancient symbol that the shall see, there are other experiments which Romans borrowed from the support this fact. Researchers are deterEgyptians. The Romans thought mined to isolate all variables to find out if that this hieroglyph was a the drug is really working as opposed to an prayer to a god. So even today illusion that it is working. But even here, in every prescription starts with a prayer to Jupiter. the logic of supposedly hard-nosed science, there is a final twist. When the results of this double-blind study are published, they may look something like this: Thirty-three percent of the people given the real pill show improvement while only 22 percent of the group given the sugar pill shows any improvement. Thus, the thinking goes, by eliminating the placebo effect — the belief by the subject that he or she was getting beneficial treatment — we have proven experimentally that the active ingredients in the drug are powerful and effective. But notice that these experiments also demonstrate that feelings are therapeutically significant to that 22 percent who are getting the sugar pill and show improvement. The placebo effect is shown to be even stronger if the experimenter actively tries to convince the subject by word and deed that she or he is getting the real treatment — for example, if the inert substance is administered as an injection. Transfer the placebo effect to a real life visit to the doctor. “We can’t really do anything about your pain,” she may say, “But take this pill, it may make you feel a little better.” And now imagine a different scenario where your doctor says instead, “This is a wonder drug that will have a powerful effect.” Again there is research to show


that your pain will actually be reduced when the power of the drug is combined with the placebo power of your doctor’s words.

stress, sickness and health Understanding the relationship between the brain and the function of other systems is a rapidly emerging field. All the evidence points to the fact that there is an important influence of the mind over the body in its ability to affect the immune system.

RALPH SNYDERMAN:

The National Center for Complementary and Alternative Medicine is funding about a dozen studies on the placebo effect, to try to understand the mechanism by which a patient’s beliefs and expectations can influence their physiology.

MARGARET CHESNEY, Ph.D. (THE NATIONAL INSTITUTES OF HEALTH – NIH):

If you have a belief that the treatment you are getting is going to take pain away, that belief has been shown in experiments to be capable of releasing the chemicals in your brain that actually reduce how much pain you’re feeling. These people believe they are receiving a powerful pain medication, but in fact they’re just getting an inert injection. But that belief is enough to markedly reduce how much pain they feel.

JEROME GROOPMAN:

It is not imaginary; a placebo is a very powerful, potent medicine. It works through brain pathways and nerve chemicals. So just walking into the room to see the doctor has an impact on health. This is a very important fact that we, as physicians, must remember: Simply the interaction between doctor and patient is a very important part of the healing process.

ESTHER STERNBERG:

The opposite of the placebo phenomenon is something that’s called the “nocebo.” It makes sense that if the mind has the power, through thoughts, to affect the body positively, then negative thoughts could have negative outcomes. If you don’t expect to do well, perhaps you will not do as well. A classic example is that of very sick patients who, when they are told that they don’t have very much time to live, soon get much sicker. There is something more going on and we are only just now beginning to understand that the mind-body connection can be both positive and negative.

SHELLEY ADLER, Ph.D. (UNIVERSITY OF CALIFORNIA, SAN FRANCISCO):

We know that the physicians’ words are important. They have tremendous power to heal or to harm.

DENNIS NOVACK, M.D. (DREXEL UNIVERSITY COLLEGE OF MEDICINE):

We can see that thoughts and beliefs, under certain circumstances, can make you sick and beliefs can make you well. But how does this work? Medical researchers are beginning to uncover the secrets of the precise biological mechanisms by which emotions can have a direct effect on our health.


An unhappy marriage is bad for your health. Reuters news report, December 2, 2005.

Health is really a balance. Most people think about health as simply the absence of disease, but it is a lot more than that. We are walking through a very dirty soup every day of our lives. Every day the body has to deal with all sorts of insults in the form of bacteria and viruses. That’s normal. The whole body — the brain and the immune system — is set up to respond to these insults and then get back to normal, get back to some balance. Our health lies not only in the body’s response to these insults, to disease, but in setting itself back to a state of balance.

ESTHER STERNBERG:

In each of our bodies, there is a whole universe of many specialized cells and nerve chemicals that all work together. When they work together at the right time, and in the right way, that is what constitutes health. If there is a mismatch, that is when you have disease, and one of the important factors that affects the balance of this system is stress. Hans Selye was a professor at the University of Montreal at the same time that my father taught there. Selye believed that if an individual is exposed to too much stimulation, too much stress, he or she can become ill. He understood that there was a stress response that included the brain and endocrine organs, and that even affected the immune system — the system in our body that fights disease. Not enough was understood at that time about how the immune system worked, or about the hormones that were released under those circumstances, to really understand how stress could make you sick. So Hans Selye’s ideas were very controversial during his lifetime. It took decades to develop the scientific tools to understand each part of that system; the mechanism by which stress influences how the immune system works. Even then, hard-core scientists continued to be skeptical.


that requires about 10 slides per subject. We were studying 78 students before their exams, during their final exams when they were under high stress and after their exams as a baseline. That is 2,340 slides, and I read every one of these slides myself — it literally took days to read all these slides. The data came back showing evidence that indeed the latent virus was reactivated when the students were under high stress, but I absolutely refused to accept the results. I went back and I reread every one of those 2,340 slides. That’s how much I did not believe that stress could reactivate viruses. But it was true.

The husband and wife team of Ronald and Jan Kiecolt Glaser are scientists doing basic research on the effects of stress on the immune system. When they began their work, nobody could have been more skeptical than research scientist Ronald Glaser. His field of expertise is the study of viruses.

The link between the brain and the immune system is complex. When you are stressed, the brain releases a hormone that circulates through the bloodstream releasing other hormones including adrenaline, which gives you a boost of energy, and cortisol, a powerful anti-inflammatory. Cortisol has the effect of tuning down the immune system. In a crisis, all of your body’s energies must be focused on the task at hand and therefore the energy required to fight off germs is temporarily suppressed.

Until 1978, I never even knew a psychologist, and then I found myself dating one. I confess, as a basic scientist, I didn’t have a positive impression of what psychology was about. When Jan started talking about this new field called psychoneuroimmunology — based on the idea that your mental state could affect something as fundamental as your immune system — quite frankly, I didn’t think much of the idea. On the other hand, we were married by then and I felt I had to worry about the marital interactions so I agreed to do one study. I assumed it wouldn’t work out but at least I could satisfy her that we tried.

RONALD GLASER Ph.D. (OHIO STATE UNIVERSITY COLLEGE OF MEDICINE):

In our early studies, we used medical students as subjects. I suspected that during exam time, when they were under very high stress, their immune system would function more poorly than at lower stress times and therefore they would be more susceptible to illness. I never guessed that we would find the influences were far, far stronger than anything that I ever thought was there.

JANICE KIECOLT-GLASER, Ph.D. (OHIO STATE UNIVERSITY COLLEGE OF MEDICINE):

I’ll give you an example of how unwilling I was to believe these things. We were investigating the possibility that stress could reactivate latent herpes viruses like the cold-sore virus or the Epstein-Barr virus. Now, to do

RONALD GLASER:


These hormones produced when we are stressed are there to protect us. If the house is burning or if we are being chased by a bear, we need to produce sugar so we can run away. Our vessels need to constrict, so that we don’t bleed to death in an emergency situation.

MIMI GUARNERI, M.D. (MEDICAL DIRECTOR, SCRIPPS CENTER FOR INTEGRATIVE MEDICINE):


The problem is not the stress response, which is normal and necessary for your very survival. In fact, many people function very well in highstress situations, paradoxically finding them relaxing. Stress is only bad for you when it overwhelms your ability to handle it. The constant flow of stress hormones has the effect of keeping your immune system tuned down, and in the long term this makes you more vulnerable to disease and infection. We know anecdotally that after long periods of stress, we frequently get sick. Researchers like the Glasers have been able to measure this effect by showing that highly stressed people produce fewer antibodies to a vaccine in their blood stream because their weakened immune system cannot react to the invading organism.

We know now from the studies on vaccine responses in our lab and from studies in other labs as well that stress is really a player in a variety of things, and the effects of prolonged stress are far more profound, and far more important across a whole host of diseases, than we ever thought.

JANICE KIECOLT-GLASER:

We have learned that the mind, the central nervous system, plays a role in the disease process. As we continue to research the interactions between various systems in the body and mind, employing new technology to understand how they work together, this may open up new modalities for treating some very severe diseases that we have not been able to deal with so far, even cancer.

RONALD GLASER:

Doctor Mimi Guarneri, a cardiologist, believes that learning to control one’s reaction to stress can be a major factor in controlling heart disease, potentially as powerful as more hi-tech interventions.

When I am in a situation which I perceive as stressful, I’m going to produce cortisol, which will raise my blood sugar. I’m going to produce aldosterone, which will raise my blood pressure. I’m going to produce adrenaline, and noradrenaline, which will raise my cholesterol, constrict my arteries, increase my heart rate, and I have no inclination to keep cause me to have skipped heartbeats. If you are the domain of the psychological floating as it were in the air, angry, screaming, and yelling all the time, that is without any organic foundaas big risk factor for heart disease as having a tion. Let the biologists go as far high cholesterol level. as they go and let us go as far

MIMI GUARNERI:

as we can. Some day the two will meet.3 Sigmund Freud


There is another reason why stress matters. When people are under heavy stress, they do all the things that are bad for their health. They drink too much, eat too much, smoke too much, and don’t exercise. So stress hurts their immune response directly but it also has an important influence on how they treat themselves — their health behaviors.


I’ve had asthma for a good part of my adult life. Asthma is an interesting example of how a chronic illness oscillates between periods when the disease is really difficult and disabling and periods when it is quiet and bearable. When you are having an asthma attack, you really get frightened. You are running out of oxygen and it feels like you are in the water and drowning.

ARTHUR KLEINMAN:

Many things can bring on an attack, but one important factor is certainly stress. We see people with repeated asthmatic crises because they have a dysfunctional marriage, a lousy work situation, or problems in school. Exposing someone to any kind of constant stress can make the asthma go from a controllable level to an uncontrollable level. And it sets off a downward spiral. You may be anxious about what is happening in your married life, which makes the disease worse, and then you become even more anxious because of the illness. Therefore, controlling the anxiety is also a way of controlling the illness. You can actually talk people out of an asthmatic attack by reducing their anxiety. I’ve done it myself in emergency rooms. Doctors ought to be armed with methods to reduce stress, just as they’re armed with the right bronchodilators to use. It turns out that the Broadway musical had it right. Because of the constant stress of enforced singlehood, Adelaide really could develop a cold. The implications for the practice of medicine are profound.

As physicians, let us admit that emotions are a very important part of health care. Somebody who is anxious and scared, with their stress response pumping out all these hormones and nerve chemicals to the max, we now know is going to respond differently to anesthesia, is going to respond differently to the drugs you give him or her. Disturbances of emotions can change your physical health and physical disease can change your emotional health. We need to incorporate this knowledge into the way we take care of patients.

ESTHER STERNBERG:

We can now say with confidence to some people under high stress, “you must get help; you must get a social support structure that allows you to not be alone in carrying the whole burden.” And we are saying this for valid medical reasons. In Europe they actually prescribe vacations for people with burnout and send people to a spa. We should do that here.


There is a tendency to think that real medicine is really in the technology and that this other stuff is just touchyfeely. We just do it to appease people just to make them feel that we care. That is where we’re very wrong. As we understand the science behind a lot of these mind-body approaches, then we will really begin to understand that they are every bit as powerful as, if not in some cases more powerful than, the technology that we’ve come to rely on. They have very real, measurable physiologic effects that can work with the pills and the procedures.

TRACY GAUDET, M.D. (DUKE UNIVERSITY MEDICAL CENTER):

whole-person medicine The cure of many diseases is unknown to physicians because they are ignorant of the whole which must be studied. For the part can never be well unless the whole is well. The great error of our day is that physicians separate the soul from the body. Plato (427-347 B.C.) Greek Philosopher

The old mind-body separation just doesn’t work. We know that the mind and body are integrally related — what happens in your thoughts will affect your body, what happens in your body will affect your thoughts.

LONNIE ZELTZER, M.D. (UNIVERSITY OF CALIFORNIA, SCHOOL OF MEDICINE):

Let us say you suffer from migraine headaches. You might have some vascular component and you might have some secondary muscle spasm. You are hurting so you are anxious about it, your arousal system is up, and you are distressed. So, what percent of your headaches are psychological, and what percent are biological?

As your doctor, I might feel that some medication will be useful, but massage will also be useful, for the myofascial and muscle spasm part, and cognitive behavioral therapy, or meditation or yoga will help as well. Now we encounter the real world of your health insurance. Which pieces will your mental health coverage pay for? Which part will your medical insurance pay for? And which part of the therapy will neither pay for? How can we calculate what percentage of your headache is physical and what percentage is mental? As you can see, this old model of medical care really doesn’t work anymore.



The question whether physicians or the health care system should be paying attention to a person’s mental well-being gets back to the question of what the health care system is all about. I know there are those who think that all we should be doing is working on some broken body part, like a mechanic. It is insane.

TRACY GAUDET:

If a physician’s work is really about optimizing someone’s health, then how can we not pay attention to the state of their emotional well-being and their relationships and their spirituality? How can we separate their body from the rest of who they are? For me, it is impossible even to imagine treating a patient without embracing the whole being. The problem in medicine today is that we give the spirit to the ministers and rabbis and priests, we give the emotions to the psychiatrist and the heart to the cardiologist. We can’t chop people up, compartmentalize them into these little pieces because it doesn’t work.

MIMI GUARNERI:

If you are a 70-year-old who has a heart attack and you have no friends, the likelihood that you’ll die within six months is about 70 percent. If you have one friend, it falls to about 50 percent. And if you have two or more friends, it falls down to about 25 to 30 percent. So emotional support makes a huge difference in the progress of an illness.

Mary Amanda Dew is an expert on the emotional aspects of illness with a particular focus on recovery from transplant surgery.

WILLIAM MALARKEY, M.D. (OHIO STATE UNIVERSITY):

We ignore these things simply because we don’t have blood tests that shows them or a CT scan that recognizes them. That somehow makes them unimportant.

ROBERT JAFFE M.D. (HEALTH ACTIVIST, SEATTLE):

Human beings are at once biological, psychological, and social beings. That’s how we’ve evolved, that’s who we are. And if there’s a disturbance in any one of those aspects of being, it affects every aspect of being. Social isolation is as big a risk factor in illness as high blood pressure. If there are very upsetting things happening in our social environment, it affects our biology. Stress hormones start getting released which can change our anatomy. Neurons in our brain are changing in response to what is happening in the environment. If we are depressed and feeling hopeless that may well influence whether we are going to get better or not.

DENNIS NOVACK:

People often think that psychological adaptation for transplant patients is a nice little extra but not really as important as the operation and biology. This is not true. We have followed about 250 people to date from the point of their transplant onward. And, taking into account every medical and surgical variable, we have found that their psychological status in the first year after the transplant was a predictor for the onset of medical complications. People who do not make a good emotional adjustment are at a higher risk of dying sooner.

MARY AMANDA DEW, Ph.D. (UNIVERSITY OF PITTSBURGH):

There are many different ways in which your emotions can affect your health. If you are depressed, for example, you will not take care of yourself, you will not keep up with your medical regimen. That, in turn, increases the risk for the different kinds of complications and ultimately a risk of death. Even though we have found strong evidence about the critical importance of emotional well-being, we also see that many transplant teams do not pay very great attention to people’s mental health. In transplant medicine, as for most other areas of medicine that deal with physical illness, we need much greater recognition of the role of mental health and emotional factors. People aren’t just a bunch of different body parts. Your brain — how you feel emotionally — is connected with the rest of you. You cannot just ignore that piece of you and think that the rest of you is automatically going to be okay, because you will not be okay.



mind-body and chronic illness Medical care is in crisis today in part because it is a victim of its own success. The miracle drugs and the ability to perform complex surgical repairs keep us living longer, and many acute illnesses have been conquered because of vaccines, antibiotics, and antiviral drugs. Even major killers such as cancer, AIDS, and heart ARTHUR KLEINMAN: I see dealing disease, for which there is no cure, have, with chronic illness as a learning in many cases, been reduced to chronic opportunity for all of us. By the ailments that people can live with for many, time we get to be over 70 years many years. There are, by one estimate, of age, most of us will have at more than one hundred million people in least one chronic illness — two this country living with one or more chronic or three if we live longer. We’re condition, diseases such as arthritis or all going to have this experience, heart disease. The result is that most visits so we’d better get ready for it. to the doctor or to the hospital and most of the billions spent on health care are dealing with illnesses for which, by definition, there is no cure, no quick fix. Looking at the body alone may on occasion be a good way of dealing with an immediate crisis. We all thank heaven for that wonderful emergency room staff. But a practice of medicine that separates the mind from the body and relies only on pills and procedures is abysmal at dealing with prolonged, life-sapping illnesses for which there are no quick or easy remedies.

A chronic disease like arthritis destroys the tissue around the joints, causing pain and decreased mobility. Sufferers of arthritis are very frustrated because they can’t do all the things that they used to be able to do. They can’t go up and down the stairs, play with their children, or play a sport as they used to do. It is now the frustration, in addition to the pain, that is causing enormous anguish. Often people suffering from arthritis are not getting relief from traditional medicine.

BRIAN BERMAN:

Modern medicine is based on what I would call mathematical medicine: one, you diagnose the symptom — two, you treat the symptom — three, you cure. Pure mathematics — boom, boom, boom. That is rarely the case anymore.

RONALD GLASER:


Many people went into the field of medicine in my generation with the mystique that for every disease there is an underlying cause, and we need to find it and fix it and to effect a cure. That is seen as victory — everything else is defeat. This is a delusion. What we try to teach at Duke University Medical School is that as a physician, we will sometimes cure. Hopefully we’ll cure a lot. But whether or not we can cure, we must always care, and part of caring is teaching the individual to cope with their illness, to adapt to it in the best way possible. Certain symptoms may continue to be there, but it doesn’t mean that the patient’s life is destroyed.

RALPH SNYDERMAN:

A number of years ago, I had a profound revelation. If we took all the discoveries I was aware of in the United States (and I try to keep up with most of them), and allowed them to fulfill their promise, what impact would they have in the practice of medicine during my lifetime, during my son’s lifetime, and if he has children, during my grandchildren’s lifetime? I realized that through the scientific approach alone it is unlikely that we would be able to solve more than 30 percent of the problems that people come to the health care system for. I realized that, while science and technology are absolutely needed at the core of the progress of medicine, they are not in and of themselves sufficient to address our health needs. We need to be thinking of what people need here and now. When a patient with rheumatoid arthritis comes to a physician, the response is not going to be simply “here, you take this pill and it’s going to go away.” This is a condition that we as physicians may be able to treat partially by therapeutics, but an awful lot of the treatment will come about by understanding the individual and, what is more important, by having the individual understand their illness and how to live with it within what the best therapies can provide.


listening to illness

Rachel Remen’s story

A life-threatening, disabling illness concentrates the mind like almost nothing else and makes clear to us what really does matter in our lives. The story of our lives comes out with the story of illness. The doctor must listen to the story of illness, first solicit it, hear it, permit it to be said and then to understand it, to appreciate it, to analyze it even, and to make sense of it. Listening to the voice of the patient is crucial. Everything that I’ve read and seen makes me believe that taking the story of illness into account improves the care we give.

ARTHUR KLEINMAN:

Anyone who suffers from illness or anyone who has been witness to a family member suffering from illness cannot deny the fact that a serious disease is transformative. The health care system as it’s set up right now is not acknowledging or supporting that transformation. That is the pivotal piece of what’s missing in health care today. The way medicine is practiced, we take a patient with a diagnosis, we give them a treatment, and then we say okay, you’re finished. You’re done. But they are not done. It is not over. You are just starting to figure out what is your life now that you have survived this cancer. You are different. Every aspect of your being feels different — your relationships, who you are, how you relate to your body — everything has shifted.

TRACY GAUDET:

There has not been any awareness of this, any embracing of it in medicine as practiced today. We need to help the patient learn how to work with this transformation and come out the other side to a new level of health. Much of this chapter has dealt with the relations of our emotional state to our health and how the medical system can harness this understanding to the process of healing. It is fitting to put this information into perspective in a personal story. One of the most charismatic people we met during the filming of our television series was Rachel Naomi Remen, who is a doctor, a teacher, and the sufferer of a terrible lifelong illness. Along with the scientific proof that one’s emotional state affects one’s health, her story expresses, in personal terms, the extraordinary power of what has erroneously been called the softer side of medicine.

I think it is important to honor the great gift of science. Science has enabled us to do things that were only the dreams of the doctors of generations ago. Without the science I would not be alive today. But without the art of medicine, I’d probably be an invalid. When I was about 15, I became ill with Crohn’s Disease, a disease of the intestine and the joints. This disease has been my life companion for the past 52 years. When I was first diagnosed, a group of people in white coats gathered around me and told me the facts. There was no known cure for Crohn’s disease. No one knew what caused Crohn’s disease. I was told that I could expect to have multiple surgeries on my intestine over my lifetime and that I would probably be dead by the time I was forty. It was a time of great despair for me and for my family and I made a lot of life decisions on this basis, decisions about marriage, decisions about having kids. I didn’t want to start something that I knew I would not be able to finish. I have had seven or eight major surgeries. I no longer have much intestine, but I haven’t been dead for the past 28 years. If only one of the physicians around me had said to me, “You know, there might be something in you that can grow past the obstacle of this disease; even though we cannot cure this disease, you



might be able to find a way to live a good life; even though it isn’t going to be an easy life. There might be something that could be called the will to live in you, and you might be able to find it and strengthen it and find others who can help you to strengthen it.” That would have made a huge difference to me. But nobody mentioned it, perhaps because “Will to Live” isn’t found under “W” in Harrison’s Textbook of Internal Medicine. You discover something like this only by observing life itself. Healing is about the will to live, it’s about collaborating with something deep in others that they may not even be aware is there, strengthening it, calling it forth and helping them to nurture it. When I was 27 years old, I had the first of my eight surgeries. A large part of my intestine was removed, and an ileostomy was created for me, which means that I wear an appliance that collects my stomach juices and is emptied a few times daily. It is a common surgery now, but forty years ago it was not a common surgery. And I survived it. There was only one problem: I was a 27-year-old single woman and I couldn’t live with it. I felt completely separated from anything feminine or elegant, from all other young women my age. I became so profoundly depressed that I was suicidal, and I started saving the sleeping pills and the pain pills that were given to me every day, and thinking that I would wait until I was discharged from the hospital to go home and take them all. In the week I was in the hospital after my surgery, a group of experts called enterostomal therapists came daily to change my appliance for me and help me. These were all young women, the same age as I was. They would come into the room in their white coats and put on a mask, a gown, an apron, and gloves. Then they would remove my appliance, replace it with a fresh one, take off their mask, their gown, their apron, their gloves and go to the sink in my room and very carefully wash their hands. This was not giving me a good feeling about the radical change in my body. It humiliated me and made me feel deeply ashamed.

elegance of my nightgown. As she continued to chat with me in this very easy way, she took an appliance from my bedside table, removed my old one, and replaced it using her bare hands. I was a young doctor at the time and my first thought was how unprofessional! But she kept talking to me and her hands were warm and very gentle. She was so close to me that I could smell her perfume, and she was wearing pink nail polish, something no professional woman wore in those days. Suddenly I felt something come up in me, a kind of unsuspected strength or power and I simply knew that I could find a way to do this. It was not going to be easy but I could make this all right; even something like this was going to be all right. Now, this woman did not give me back my intestine; medical science can’t do this even today. What she gave me back was my life, not because she knew how to cure me, but because of her willingness to touch me. We don’t recognize our power as human beings to affect another person. We think only our expertise matters. Our whole culture is like this, not just the medical culture. It is a technological, expert-oriented culture and we have given away a great deal of our power to make a difference in the lives of other people because we have narrowed our thinking about ourselves in this way. In my fifth surgery, I was being treated by the head of the department of GI at one of our San Francisco hospitals. I developed a large abscess in my abdomen and this would mean that I would have to have extensive surgery yet again. When this surgeon delivered the news to me, I broke down and I cried. But then I looked up and saw that he too had tears in his eyes, and I realized that I was not alone with this surgery. Together, he and I, we were going to be able to do this.

Toward the end of the week a woman I’d never seen before came in to do this for me. She too was my age and she was dressed as if she was about to go out on a date. Very pleasantly she asked me if she could help me, and when I said yes, she went to the sink in my room and carefully washed her hands before she touched me. She was not wearing a white coat; she did not put on a mask or a gown. In a very natural woman-to-woman way, she commented on the



chapter two

to listen it’s tough being a witch I had a patient who had a lot of different symptoms that kept getting worse. Finally, after about the fourth visit, I said to him, “I don’t know what’s happening here. I haven’t been able to find anything physically wrong with you but I have the feeling that you’re not telling me something.” He then came right out with it. “I’ve been hexed,” he explained, “My ex-wife hexed me and that’s why I’m so sick.” This was his firmly held belief and so I had to deal with that.

DENNIS NOVACK:

I told him that he had come to just the right person because I had worked with witches in the past. And this was true. I was fortunate enough to spend a year going around the world practicing medicine. In Taiwan I had a patient who was a witch. She thought that she could kill people through her magical powers. Apart from that she was a very nice woman. She came to me suffering from stress and high blood pressure. It’s tough being a witch. Since I had this background, I could understand where this man was coming from. And once he knew that I understood what was going on, and that I respected his belief, he was able to start making some changes and engage with me in overcoming the hex. What’s wrong with you? Doctors now have enormously sophisticated and expensive tools and tests to answer this question. Probes with lights and a tiny camera can explore the maze of your intestines; a huge machine called an fMRI can look into the very functioning of your brain. But often to uncover the real answer to what is wrong, the lowest of low-tech methods may deliver the best results — simply talking with you.

Talking to patients is how doctors spend most of their time. Doctors perform about 150,000 medical interviews during their career. The number is so huge because the interviews are so short. An average doctor’s visit these days only lasts six minutes. During this brief time patients may be reluctant to tell doctors what is really troubling them. Obviously they feel rushed, but they may also be scared, superstitious, or embarrassed. And yet these interviews are absolutely critical for getting a correct diagnosis. This diagnosis involves getting to know a person’s total life, their level of stress, their family relations, even their economic woes. One example, from many we heard during the experts we spoke with: a woman reports to the doctor some vague abdominal distress. Obviously this could have a great variety of causes, from diet to cancer, but the true cause of the illness only came DENNIS NOVACK: A full half of out when the doctor spent enough time with the patients in this country who her and built the rapport which allowed her are depressed and go to primary to open up. It turned out that she had an care doctors don’t get recognized. abusive husband and her stomach pains So those patients continue to were a direct result of her highly stressful suffer. family life. It is easy to see that, without this understanding, this same patient would be sent for innumerable, costly tests and no physical cause would have been discovered. In the few minutes of a typical medical interview, building trust seems like such an impossible task that many doctors don’t even try, yet sickness and health never exists in a vacuum. To get the most from a short interview, a large HMO organization supplies doctors with a checklist. Number three on the list is “Demonstrate Empathy.” It sounds like a joke but alas, HMOs don’t joke. For your doctor to establish rapport and to express empathy with you is not just a question of being nice. Despite all the hi-tech tests available, simply talking to you and getting you to open up remains an important diagnostic tool. Unfortunately this crucial aspect of medical care is not valued and certainly not well compensated.

When a person is dealing with an illness they are dealing with their mortality, and really important things bubble to the surface. As physicians, we must take the time to hear them. The simple act of listening, honoring their life, and treating them with respect helps them to cope with whatever it is they are facing. It gives them strength, it gives them dignity, and it helps them to heal.

ROBERT JAFFE:


chapter two: to listen | 29

building a relationship ELLEN BECK: The role of a healer is to create a bridge of trust with the

patient — a bond of humanity allowing the patient to take charge of their life, and achieve well-being. Whatever that takes. It might be the right diagnosis, it might be medications, but it also could be helping them find a way to manage the many stressors in their life or letting them know they’re not alone in the world.

The body is the easy part. Any good doctor will recognize someone who is having angina or someone who needs a stent to prop open an artery. Yes, I can lower your cholesterol, yes, I can recognize in a second whether you need a catheterization, but that’s only one piece of the puzzle. We need to look at the person globally. It’s the emotional-mental-physical-spiritual aspect that is really what makes up the whole person. I cannot treat the whole person unless I have all that information.

MIMI GUARNERI:

When patients go to see a primary care doctor and the doctor says, “Well what is wrong with you Mr. Smith?” It has been shown that, on the average, they have just 19 seconds to respond before the doctor starts what is known as the medical interrogation — a series of questions to quickly get to the disease, the diagnosis, and the treatment. Think about that. The patient has 19 seconds to say something like, “My father had a melanoma and now I’ve been out in the sun a lot and I’ve got a spot on me. And maybe I won’t even tell you that I’ve got it because I’m too fearful that you’ll tell me that it is cancer.” How do all these feelings get pushed into 19 seconds?

ARTHUR KLEINMAN:

of all, about 75 percent of all diagnoses in primary care are based on the history. So just being skilled in taking a history, being good at the interview, being human enough to let someone tell what really matters to them, is an essential part of making a diagnosis. So even the technical side is to some degree embedded in the human. In the initial encounter, our first goal is to address the problem in a responsible medical and professional way — the reason that the person came in — whether they have a fever or they have a lump or bump, or a mental illness; whatever it is. The person must feel that somebody listened and somebody cared. Over time, you can address other issues but you need time to build trust.

ELLEN L. BECK, M.D. (UNIVERSITY OF CALIFORNIA, SAN DIEGO):

I love it when patients cry in my office. If a patient is crying, it means that they are crying about something very important in their lives and that is often exactly what I need to find out about in order to be able to help them. Also, if a patient cries it shows they trust me. It means that I have established a trusting relationship which can be the foundation for healing.

DENNIS NOVACK:

Many younger physicians tend to be more aloof. They do not engage patients in conversation or ask simple questions to get to know the person that they’re taking care of. Questions like “What do you do for a living? Are you married? Do you have kids? What were you up to before you got sick? What are your hobbies? What do you hope to do after the operation is over?”

ROBERT JAFFE:

Doctors need to learn how to slow down and to listen, until people are able to say all they need to say. Things will come out that won’t emerge unless doctors ask open-ended questions such as, “Is there anything else you want to tell me?” They must not ask that question when their A doctor explained the function of hand is already on the doorknob and their prescribing pills at the close of a body language is saying “please I’m already brief consultation: “It’s a nice way of late as it is.” getting rid of the patient; you scribble something out and rip the thing off the pad. The ripping off is really the ‘f**k off’.” 4 Roy Porter

With all the technology available to them, many doctors think that this talking is the touchy-feelie, soft side of medicine, so why pay attention to it. Many think that what is really important is getting the X-ray or giving the antibiotic. But it turns out that this thing is really important in many ways, because, first



I thought up a series of questions that could help the doctor find out what really matters culturally, socially, and personally in a patient’s illness. ª What do you think is wrong? ª How does it affect you? ª What do you think caused it? ª What do you think is going to happen to you in terms of the course of your illness — will it get better or not? ª What do you want as the treatment? What do you not want? ª What do you fear most about this illness? ª What do you fear about the treatment?

ARTHUR KLEINMAN:

Asking questions like that is an attempt to open a conversation and get at what’s really at stake for the patient. I teach the students to ask the patient, “What are your sources of strength?” If the patient says “What do you mean?” you can give them some examples. Maybe they find strength in listening to music or going for a long walk or reading. When the patient tells you their source of strength, you can even write them a prescription, in addition to their Western-medicine pharmacy prescription. You can prescribe one long walk weekly or a hot bath nightly, listening to music twice a week or something similar. People are very grateful for that because you have gone to the person and identified what is important to them.

ELLEN BECK:

need. It is pointless to focus on fixing a body part while not having a clue about the person that you’re taking care of. It seems ridiculous, but that is how most medicine is practiced these days. In my experience, even in the very short period of the interview, the truly great physicians can somehow establish a connection with a patient that makes the patient feel as though they’re existing in all three dimensions. The doctor appreciates that the disease that they have actually has a ripple effect and expands out to influence many different aspects of their lives. The best physicians can make people feel that they have been understood.

SHELLEY ADLER:

When you sit with someone you hear their story, you hear about the circumstances of their life, their relationships. Do they have stress caring for elderly parents? Or are they under stress because they must take care of a grandchild? Is there illness in the family? How are they doing at work? What kind of environment are they in eight hours a day?

MIMI GUARNERI:

After we learn about who we are talking to, there are also more formal ways of screening people. For example, you can screen for depression. There are quick screens that enable you to say this person shows a high risk of suicide or for high stress or alcoholism. These are things that we can do right up front. But you must begin by asking the right questions and really listening to the answers.

During a medical encounter, most people want to be seen in the fullness of their lives and they want to have their specific concerns understood. There is more going on in any particular condition than is seen in the narrow view of most medicine. There are all kinds of complications based on a variety of things — their culture, their socioeconomic status, where they are in the world, their profession, and their friends. What they experience when they have a disease, they don’t experience in just one organ of their body; they experience it as a whole person and in its effect on other people around them.

SHELLEY ADLER:

In my town they have a good ambulance service. Anyone whose heart stops beating gets picked up by these really expensive trucks, and these paramedics come out, and they start doing CPR and administering drugs. You are taken to a great hospital, put into an expensive room, given a bunch of expensive medications. And then, when you are stabilized, you may find yourself right back on the street with a bottle of wine in your hands or at home with all your old problems. At great expense, we give a person another few days, or a few months of life but have no idea who they are or what they really

ROBERT JAFFE:



the context of illness Medicine is caught in an iron A physician must consider more cage of rationality. Increasingly medical practice is than a diseased organ, more filled with algorithms. You see a set of sympthan the whole man. He must toms and you follow the book in treating them. view the man in his world. But where does the patient come in? Where is Harvey Cushing, M.D. the individuality of the person, their family, their social class, their ethnicity? Where does an issue like culture come into that?

ARTHUR KLEINMAN:

There is a painting by Jan Steen, the great Dutch artist of the 17th century. In it, he portrays the doctor in the home of the patient and you can see the whole domestic setting of care, the sensitivity, the sensibility, the attention to emotion and to family and to the illness experience as a part of a life.

Starting in the early part of the 20th century, and especially after the Second World War, doctors began moving their practices to hospitals and clinics, and they weren’t visiting patients in their homes anymore. So this whole domestic setting for care disappeared. You enter the aseptic environments of a clinic or a hospital. You strip off your clothes, you put on that hospital johnny, and you become an object of observation for MRIs and brain scans and PET scans. All these are critical for the medical care at a technical level. But how, in the middle of that, do you maintain the human connection with people? Do we train receptionists to deal with you so that you don’t feel stripped of your humanity? Do we train technicians to be as caring as they are technically competent? I have my doubts.

ARTHUR KLEINMAN:

When I was growing up, my uncle was a family-practice physician, with a room of the house as his office. He would know his patients because they were people from the neighborhood. He would know who their spouse was, who their kids were; he would know something not only about their physical body, but about their lives. When you know someone’s life, then in a crisis you know how to act. You know that chest pains can be from heart disease but they can also be from panic or grief.

MIMI GUARNERI:

I was attending on the wards and an intern was presenting a patient who was just transferred from the ICU. She was a 33-year-old woman who had had her fourth asthma attack this year. In the ICU she had needed a breathing tube inserted because she was so very RACHEL REMEN: The important sick. As she was now doing better, the intern thing for me in working directly thought that within a couple of days we could take one-on-one with significantly ill her off the IV medications and ship her home. It people is to listen generously to seemed very straightforward. Then I asked the them, without any judgments question, “Why does she keep getting sick?” or expectations, to listen for Nobody had the answer. I suggested that we go those things below the surface. and talk to the patient.

DENNIS NOVACK:

It turned out that this young woman had been a crack addict years ago. She had given up drugs and had been clean for twelve years. Then her mother died suddenly and she was feeling tremendously guilty. She went back to crack. Now addicted, she had no health insurance, no money to buy medications, and nowhere to live.



That is a great example of why we need to find out about patients lives and the context of their illness. To care for this woman, we have not only to treat her asthma, but we have to get her some help for her addiction, we have to help her with her housing, we have to help her forgive herself for whatever she needs to forgive herself for in relation to her mother. She needs some counseling about that. There is so much we need to do for this woman that has nothing to do with finding the right cocktail of asthma medications. That’s the bio-psycho-social model for practicing medicine.

DENNIS NOVACK:

One of the major objections to practicing this form of medicine is that a doctor’s time is too expensive. As with most people in her situation, this woman with asthma may be referred to an overworked social worker who can offer little help. The result is that she, and people like her, are costing the system, one way or another, tens of thousands of dollars for each of her hospital stays. Practicing medicine in this way is not only inhuman — it is also inefficient and in the end much more costly than attempting to deal with the larger picture of the person’s illness.

Our health care system generally intervenes only when there is an acute crisis. I am hoping we have enough sense and will and determination to turn it around so that we start with individuals when they are well and design a road map for health that is personal for them. The road map will account for what they have inherited and where they are now with their health. It will disclose what is their likelihood or susceptibility for future health problems and what they can do to avoid it. For example, if an individual has a high likelihood of developing diabetes, we could advise that individual what changes they can make in their life and work with them to minimize the likelihood of the disease occurring.

RALPH SNYDERMAN:


In medicine today, we spend most of our time and money on the late stages of chronic disease. For example, a heart attack is a consequence of a coronary artery disease that has persisted for many years, if not decades. And then after all this time, the person suffers a heart attack and we treat the heart attack. But we ought to do something before that heart attack occurs. We now emphasize cholesterol-lowering statins, diet, and exercise to prevent coronary artery disease and that is a very good approach. But I think we could do far better in intervening well before the damages occur. This is not that hard to do. We have the capacity right now but need to develop the will to do this. We need to educate physicians to think this way. Part of this education in my view is integrative medicine, because it focuses on the individual as the center of the health care system. It starts with them and hopefully looks forward in time with them. It is a system of personalized health care planning. At the center of health care ought to be a close working relationship between a person and the health care system — doctor and patient. That is not radical. It should not be considered a new approach. Unfortunately the health care system has drifted so far away from this concept that bringing it back has required a new name, “Integrative Medicine.”

MIMI GUARNERI: If you have heart disease and have a stent put in, that means you have an eight-millimeter piece of metal to open your artery. But your vascular system goes from the top of your head to the tips of your toes. We have just fixed eight millimeters of it. What about the rest of it? What about everything else that has led up to this problem?

integrative medicine Many of the doctors we interviewed during the course of this television series practice what is called “Integrative Medicine.” This medicine is integrative in the sense that it incorporates the best of Western technical medicine with the holistic, human side of medicine that is a vital aspect of our health and healing.

It is often not enough simply to give patients medication and procedures. Integrative Medicine embraces the idea that the patient is a mosaic of the mind, the body, and the spirit. So if we only pay attention to the body, and we don’t pay attention to the mind, or the feelings, or the spirit, then we are actually not practicing effective medicine.

ELLEN BECK:

Integrative Medicine is what many of us are thinking the future may hold. It means being able to offer patients a full array of choices, from conventional medicine to those complementary and alternative strategies where we have scientific evidence that they work and that they’re safe. There’s a real

MARGARET CHESNEY:


interest in this subject and medical schools across the country are informing practitioners about effective complementary strategies so that doctors will have more to offer their patients. When we think about good medicine, we need to focus not just on the healing of disease, we need to give people all the tools that are available so that they can have the best quality of life possible and a sense of well-being that is both physical and mental. Only then do I think that we’ve done our job. We must recognize that patients can benefit from improved nutrition, from certain vitamins and herbal treatments. There may be problems, particularly musculoskeletal problems, where manipulation or massage is a heck of a lot better than surgery or a drug. There may be approaches such as mindfulness meditation or various forms of self-hypnosis that reduce stress, reduce pain, and allow the illness to be more tolerable.

RALPH SNYDERMAN:

Integrative Medicine is more than a couple of New Age treatments thrown into the mix. It has to do with finding whatever treatments and approaches are best for that particular person, putting the patient in the center of care. When somebody comes to our Integrative Medicine Center for an assessment, we look at the whole person, the different emotional, mental, and physical factors, environmental facts, and family dynamics. We also look at the person’s health from a nutritionist’s point of view or an acupuncturist’s point of view to get an enlarged picture of what’s going on with that particular person. After all this, and taking into consideration the person’s beliefs and preferences, we will try to come up with a plan of action. Those will include things that they can do to help themselves and those therapies that we do for them. We are trying to establish a partnership.

BRIAN BERMAN:

A medical student once said to me, “I find this experience boring because everybody is coming here with the same disease.” I found this comment very troubling because he didn’t see that every person is unique. We may all suffer from similar diseases — diabetes, high blood pressure — but in each person that illness is unique. It is not the diabetes that we should be looking at but a person with diabetes. How the disease presents More important than knowing itself in each individual will be totally different what kind of disease the patient because a different person is at the center of has, is knowing what kind of the illness. How will they manage it? How will patient has the disease. they cope? William Osler, M.D.

ELLEN BECK:


The patient’s disease is what pathology they have, what we can see under a microscope, what we can understand from a laboratory test. But the patient’s illness (as opposed to their disease) involves all the meanings that the patient brings to their symptoms. Contributing to how they react to the disease are their worries, their personal background, and their histories. It is the experience of the disease, not just the disease that the physician must understand and treat.

DENNIS NOVACK:

There used to be an interesting test called the “Life Events Scale.” It gave a number of points for various things that could go wrong in a person’s life — the more distressing, the higher the score. So, a sprained ankle — no big deal — would get a low score, while someone’s divorce or the death of their child would get a very high score. But what if the patient is a dancer and earns her livelihood by dancing, or is a professional athlete who suddenly cannot go to the Super Bowl to fulfill his life’s dream? To them, this sprained ankle is everything. So you have to view the illness in the context of a person’s life. It is the practitioner’s responsibility to give each patient the choices so they have the highest quality of life possible.

MARGARET CHESNEY:

Good medicine is practiced when we work with the whole person. A sprained ankle would be an inconvenience to one person; for someone else, it would be a career-ending disaster. In a similar way, what might seem to the doctor like a small nuisance side effect of a prescribed medication might interfere with something incredibly important to the patient. There is no “one size fits all.” Where people are in life, what is their belief system, how much they’re willing potentially to undergo and suffer in order to live, these things vary greatly from individual to individual.

JEROME GROOPMAN:

The patient is the expert on the illness since they are living with it day after day. An example: a man with diabetes suddenly becomes suicidally depressed and will not participate in his care. As his doctor you’re wondering “what’s going on here? Let’s get a psychiatrist in to give an antidepressant.” But then the psychiatrist comes in and speaks to the man, and gets the story that the doctor should have gotten in the first place. We find out that this man’s grandfather had diabetes leading to peripheral vascular disease. He had his leg amputated, first below the knee, then above the knee, and then his other leg and then his grandfather died of complications of infection. We then find out that this guy’s father went blind from his diabetes; so when this man is told that

ARTHUR KLEINMAN:


he has diabetes, he completely falls apart. You need that story to understand who that man is, what that illness experience is, and how you’re going to deal with him. In the absence of that story, you’re practicing veterinary medicine.* You cannot just walk in and say, “Well, we fixed your heart, you’re great, okay, see you later.” You have to be comfortable asking a patient what their concerns are, but if they don’t bring up their concerns, you can say something like: “It’s an embarrassing topic but a lot of patients will be concerned about sexual activity after an operation like that. Is that one of your concerns?”

DENNIS NOVACK:

understanding a patient’s culture I think one of the biggest misperceptions about culture is that it’s something that other people have. When we talk about ethnic food, we never think about hamburgers and hot dogs. The truth is that everybody has culture and everybody has an ethnic group as well. This is a challenging concept for physicians. We all tend to look out from our group. We all see the world through the lens of whatever culture we are from. That is how we all make our decisions.

SHELLEY ADLER:

They have a million concerns. They’re in pain so you have to treat their pain, but you also have to treat their suffering. They may feel guilty — a patient may say, “My wife has been telling me to stop smoking for 20 years, now look what I’ve done, I’ve put such a burden on my family.” They may be tremendously worried about their ability to care for their family in the future. All this is part of what’s going on with them — not just the disease. Often what we think or feel about a disease may limit us more than the disease itself. What you believe about your illness and what you believe about your potential may have more impact on your life than your disease does. Everybody has seen people with very significant physical challenges or disabilities who live full and active lives. We also know people with minimal physical problems who have become invalids because of the way they think of themselves and their potential.

RACHEL REMEN:

Knowing why a patient believes that he or she is ill will help us to understand the whole context in which a patient is operating. In our community we have had a lot of Russian immigrants and many were complaining of heart pain. The physicians recommended them for all kinds of cardiology workups until they realized that their patients were talking about emotional pain. Many cultures, for no particularly good reason, think that the heart is the seat of the emotions, as opposed to the brain or another organ. There is nothing about the heart, a pump, that should make it the seat of the emotions, but that’s how we think about this in our society. In some Southeast Asian cultures, for example, in the Hmong society, the liver is the seat of the emotion. And when you are devastated, you are broken-livered. Knowing how a patient thinks about things makes it much easier to communicate. It makes the dispensing of medical information much easier because a physician knows in what way to describe things. The best physicians I know are not the physicians that spend the most time with their patients or the ones that ask certain types of questions. It is not as if there’s a rote list of questions that you can memorize and then ask. The good doctors are those who take the time to listen to what the patient is saying and consider the patient in the full context of his or her life.

*I made this statement a long time ago and I was corrected by the American Veterinary Association. They explained that good vets really do pay attention to the psychological side of the animals they treat.



What do we expect for ourselves in the world? Do we expect that good things will happen to us? Do we deserve to be cured? Do we have a belief in fate or in the effectiveness of our own action to make our lives better?

DENNIS NOVACK:

Coming from some cultures, a patient might feel that they deserve this illness because they’ve offended their ancestors in some ways. That is what they’re bringing to the interaction with the doctor. If we, as physicians, don’t recognize that underlying belief and just tell them to take the drug, they may very well not get better. I had a patient, a very religious woman with breast cancer who was convinced that she had no reason to be treated, even though that treatment could well save her life. She felt she was undeserving of hope because she was in a desperately unhappy marriage and she’d had an affair with another man. She saw her breast cancer as a punishment from God. And given that God controls everything in the world and ordains your fate, this was her just due, there was no reason to hope, no reason to try to get better. I could write prescriptions for her from now till the cows come home but she wouldn’t take them. I could offer procedures to remove the cancer and radiate her chest and maybe even eradicate the tumor but she would refuse this because she felt she was undeserving of life.

JEROME GROOPMAN:

Doctors know a great deal; they see people who are vulnerable and it’s very easy for a doctor to be the one in charge. On the patient’s side, it’s very easy to be the one who is being bossed around. Maybe it’s easier not to be so afraid if you feel like you’re doing what the doctor wants rather than trying to figure out what you really want yourself.

MAEVE KINKEAD (ACTRESS, WRITER, AND CANCER SURVIVOR):

Maeve Kinkead is an actress and a writer who was diagnosed with breast cancer. Naturally she wanted to be cured but it was also very important to her to preserve her breasts. Her story highlights the approaches of two doctors — both were highly competent in dealing with her medical needs but radically different in approaching her needs as a human being.

Maeve’s story – a tale of two doctors

I’m very adamant that one must never put one’s own belief system onto someone else. If somebody believes in Allah, don’t bring Jesus into the encounter. On the other hand, for so many people, faith and prayer are their sources of strength. If a patient tells you that prayer is important to them, then, I believe as a physician, you may bring this into the encounter, as long as it is the patient’s method of prayer, not the doctor’s.

ELLEN BECK:

We had a patient, a wonderful Somali woman, who was dying in the ICU. At the hospital the family would pray five times a day. They would kneel around her bed and pray. We had a sheikh come in and read the Koran. The family wanted to prepare her hair in a certain way before she died, and use special water from Mecca that they sprinkled on her. All this time I’m thinking that it is amazing that we are doing all this in the intensive care unit. The physician is the person who can make that happen in the ICU, who can say, this is what is important. The intern, the family, and I were actually standing around the bed holding hands, and we were sharing stories from her life, how she had been a wise teacher for us. Afterwards, the family thanked us. They felt that she had had a good death.


I was always the obnoxiously healthy person, always. I never got a cold. I never got the flu. I knew that a woman of a certain age should have mammograms. But I had a lot of things going on in my life and I let three years go by without having a mammogram. When I finally had one, I wasn’t too worried because I knew I was healthy. This time the outcome was different. They found something suspicious. My OB-GYN sent me to a breast surgeon.


I went to the appointment and did what everybody does. I went into the little room and I was standing there in my paper shmata, examining the whole room, thinking that if I took notice of everything in the room, surely everything would be all right. The door flies open and the doctor comes in and before she introduced herself she said to me, “You have not one lesion but two!” The effect of this was devastating, and I didn’t even know what a lesion meant. I suddenly felt demoted from being a healthy person to not knowing what was going on. I don’t think I ever really got over that initial experience. I felt off-balance. I felt attacked. I certainly was not impressed with her bedside manner. I had a biopsy and on the next visit, she was extremely clear on the information she gave. She told me that I had DCIS. She told me what it was. She told me what the options for surgery were. I was trying very hard to keep a sense of control, which for me meant understanding what was going on. So as I was shaking, I was taking notes. She indicated there were two alternatives. One was to have a lumpectomy and one was to have a mastectomy. At that point I was completely in a panic, because I could not understand why if what I had was called zero-grade cancer, why anybody was using the “m” word. That seemed to me radical surgery and horrifying. I was in shock and in grief at the same time even to hear that word. During the discussion, however, all my energy was focused on being the good patient, asking all the smart questions — whereas I was really feeling shattered. I think I was trying to understand as much as I could and stay in control as much as I could. So I couldn’t really factor in another feeling that I was having at the same time — an overwhelming feeling that I didn’t want this person to be my surgeon. Instead, everything that was coming out of me was, “How can I please you?” I asked her, “If you were in my shoes, what would you do?” Which was really stupid, because what I should have been thinking about is, “What do I want to do?” And in fact I already knew what I wanted to do. No way did I want to have a mastectomy. I wanted to try and keep the breast if I could. The doctor answered, “Well if it were me, I would probably have a double mastectomy.” At that point I almost passed out.


My husband said, “We will probably want to get a second opinion.” And her response was, “You really don’t need to do that. Any surgeon worth their salt will tell you what I have told you.” All this made me feel that she had an agenda that she knew best, and if I was at all smart, I would simply do what she was saying. I knew I didn’t want to do that, but I was also really very frightened and very at sea. I didn’t have enough information. What she had presented was very clear, but it was very simplified, which for me was not helpful. I felt it was improper to ask all of the questions I wanted to ask because she was a busy woman. And beyond that, she scared me. After we left, I had that feeling that people talk about when they’re in an accident and there’s no sound in the world. It’s that kind of isolation and fear. It’s like you’re losing something very palpable that you’ve always had, some sense of reality. I immediately got on the phone with a friend of mine who’s a doctor and I described the interview and repeated that the surgeon had indicated that there was really no need to consult another surgeon or get a second opinion. He said, “Oh, she said that, did she?” And then he laughed. And at that moment I thought, oh, maybe everything’s going to be a little okay. Then he asked me, “How do you feel about being with this doctor?” And I was quiet. Because I didn’t really want to think about how I felt about being with this doctor. He explained to me that it’s extremely important for you to work with a doctor whom you choose, with whom you feel comfortable. It’s important clinically, it’s important to how you do. It’s important for you as a person. “You need a doctor who makes you feel empowered and smart,” he said, “You don’t need a doctor who makes you feel passive and dumb.” For me that was absolutely true: I was feeling passive and dumb, like I was being led to the slaughterhouse. It wasn’t working. I was terrified and I wanted to get away. My friend sent me a paper to read that made me realize that there were lots of different opinions about the particular kind of cancer I had. It said that some women do opt for a mastectomy because that’s the best thing to do for them. Other people don’t want to do that.


That was the big turning point. I was getting some of my strength back, getting a feeling of control. I saw another surgeon whom I liked immediately. There were big differences between my talk with her and my meeting with the first surgeon. I didn’t feel a time pressure. I felt free to ask stupid questions and I had a lot of stupid questions. She said, “You don’t have to make your mind up right away. This is a very complicated situation. It’s not just the information; it’s not just the percentages; it’s the emotion of it and you need time to absorb it.” I felt returned to the land of human beings. I remember that on the way out of the office, she touched my hand slightly, very naturally. It wasn’t like she was going to hold my hand in a melodramatic way, but just that she would do that interested me. My reaction was very strong. She was letting me see herself as a person who was making a natural gesture to somebody whom she could tell was distressed. I liked that and I liked that I was able to tell her that it was a priority for me to remain a two-breasted person. She gave me pretty much the same statistics that the other surgeon did. She didn’t whitewash things. She said, “If you want to try what we call breast conservation therapy that’s a perfectly good decision.” I had trust in her. Each time I saw her, I went away from her feeling better. With the other doctor I had left feeling worse. I’m really grateful to her and I’m really grateful that there are doctors who are well trained, who are expert, but give you a little room, give you a little time, give you space. They give you the sense that it’s your body and it is your life.

what can you do? There are a few pointers that your can take from the proceeding chapters when managing your own medical care. CHOOSING YOUR DOCTOR

Choosing the right doctor can make the difference between life or death, dignity or humiliation, healing or suffering. Yet, most people put less thought and effort into choosing their doctor than in choosing a car. For example, many people simply scan a list provided by their insurance company or HMO. STEP 1: How to judge whether a doctor is medically competent. Ways to tell include:

a. Quality of medical school b. Quality of residency c. Lack of license revocation or malpractice suits d. Admitting privileges at a good hospital STEP 2: How to determine if a doctor is right for you.

It is very important to find a doctor who makes you feel comfortable. This is not just about “good bedside manner.” This is important clinically — it can affect the outcome of a health problem. Ask yourself these questions: ª Do you feel comfortable enough with your doctor to call him or her about your concerns at any time of day or night? ª Does your doctor take the time to learn about you as a person, not simply as a “case”? ª Does your doctor really listen to you and understand your values and preferences? ª Do you feel that your doctor is willing to spend time with you and become a partner with you in dealing with your health over time? ª Do you feel empowered and smart when you are with your doctor or does your doctor make you feel childlike or dumb? STEP 3: How to find a doctor that is right for you.

You should shop carefully for your doctor. It takes real effort to find the right doctor for you. Here are some tips on finding a doctor who is a good “fit”: ª Ask friends whose judgment in such matters you trust. ª Get referrals from nearby medical schools or major medical centers.



ª Check the names you find on the Internet.

TAKE YOUR TIME.

ª Then interview or try out different doctors.

As we have seen from Maeve’s story, don’t allow your doctor to rush or bully you. As Maeve said, it is your body and your life, not the doctor’s. Except in those few life-threatening situations that do require immediate intervention, take the time to decide what you really want. It takes time to absorb information — to absorb and understand it intellectually and emotionally. And certainly, with any major procedure, get a second opinion, if only for your own piece of mind.

“Don’t give up — they’re out there, I know many of them.” Ralph Snyderman from Duke tells us, “My own physician is that way and I wouldn’t have it any other way. If your primary doctor is not such a person, I would look for another. There’s too much at stake to compromise on your own physician.” ª If you make a choice and several visits down the line find out you can’t talk to this person, he or she doesn’t give you time, or doesn’t pay attention, move on. PREPARING FOR THE VISIT

ª Make lists and take notes ª If it is a first visit, gather your prior medical history, information, and data beforehand so you don’t waste visit time. This information should include descriptions of prior acute and chronic diseases, accidents, trauma, hospitalizations, and surgeries, as well as a list of the medications you are currently taking — both prescription and over-the counter — both traditional and alternative. The list should state both the name of the medication, the strength of the medication, and how many times a day you take it.

THERE ARE NO STUPID QUESTIONS.

It is normal to not understand something. It is normal to forget or be unable to absorb a lot of information the first time you hear it. Do not be afraid to ask a doctor to repeat something. Do not hesitate to call your doctor (or the health care professional who assists him or her) later and ask for information to be repeated or clarified.

ª For each visit, prepare a list of your specific questions or concerns, and include your goals for the visit. ª Even an excellent doctor can’t read your mind, so be sure to articulate what is bothering you no matter how embarrassing or seemingly unimportant your concerns are. ª Insist that all your issues and questions be noted. Discuss which items are priorities, if there is not time to address them all. ª You have a right to your medical records. Get copies of the results of all your tests, procedures, immunizations, etc. Ask for explanations if you don’t understand something. Keep an up-to-date record of all medications you are taking. ª When you have an appointment where you might receive bad news, bring someone with you and/or a tape recorder to tape the session. Take brief notes when the doctor is talking, but do not let this interfere with listening and reacting.



chapter three

to treat Here is a telling statistic. In a recent survey 50 percent of respondents — half of those questioned — reported that they do not follow the course of treatment prescribed by their doctors.5 They gave a variety of reasons for this extraordinary level of noncompliance. Many felt that the doctors were being too aggressive, only ordering the test or prescribing a particular treatment to cover themselves against potential lawsuits. Others felt that their doctor did not have their best interests at heart — they felt they were really working for HMOs or even drug companies. It all adds up to a dramatic lack of trust. Much of this lack of trust inevitably comes from the simple fact that patients feel no connection with their doctors. They are not given a chance. More specifically, doctors do not, or can not take the time to DENNIS NOVACK: Thousands of explain the reasoning behind the particular years ago physicians were priests, treatment program they are prescribing. or shamans — spiritual healers. In this vacuum of support and hard inforWe come from that tradition. mation, many patients ask themselves There’s a lot of what physicians can questions such as, “Why should I take do today that derives directly from blood-pressure-lowering medication with that tradition, that sort of healannoying side effects if I don’t even feel ing, spiritual tradition. It’s just sick?” or “Why should I continue taking that we get so caught up in technology that we sometimes forget those antibiotics (which by the way are that we also have these priestly upsetting my stomach) if I feel fine after and confessor functions. The great taking only four pills?” or “Do I really have physicians will understand that to undergo the extreme unpleasantness and be comfortable with it. of a colonoscopy?” (Most people, in fact, avoid colonoscopies although that procedure has been proven to save lives.) If patients do not get a simple explanation from their doctor about why they should take a certain medication, what chance does a person have who must undergo complex, lengthy procedures? What chance is there to make drastic changes in their diet when it


could save their life? The answer to these rhetorical questions is, of course, no chance at all. In another recent survey published in the European Heart Journal, fewer than half of the cigarette smokers questioned quit smoking even after experiencing the wake-up call of a cardiac event such as a heart attack. Almost as interesting a fact — one-quarter of those who claimed that they had given up smoking were tested and found to be lying to their doctors. All had been told of the risks of continued smoking and had been strongly advised by their doctors to stop. Only 48 percent heeded this advice. The doctors who conducted the study found the results “unbelievable” and “worrisome.”6 But these results are not at all unbelievable. Tobacco is highly addictive and breaking the habit is, for some, excruciating. What patients needed was a lot of support and hand holding, exactly what they do not get from today’s medical system. The result is the health care crisis we face today — millions of cases of diabetes, heart disease, sexually transmitted illnesses, and other so-called lifestyle diseases that can be prevented or their severity reduced. A triple-bypass open-heart surgery costs well over $100,000. A diabetic on dialysis can cost more than $60,000 a year.7 The sick person and their family inevitably bears some of this cost and we, one way or another, must foot the rest of the bill in higher insurance premiums. Multiply this by the 24 million people diagnosed with heart disease 8 and the 375,000 patients in kidney failure 9 and we can see why our medical system is approaching financial meltdown. Much of this illness is unavoidable, but some can be prevented and just a little prevention can translate into huge savings in money and suffering. Dr. Dennis Novack of Drexel University reminds us that 50 percent of the causes of mortality in this country are related to modifiable behaviors such as smoking, overeating, and leading a sedentary lifestyle. Bad habits are extremely difficult to break and most people cannot do it unless they have a support network including an active partnership with their doctor or health professional. Preventing illness before it starts is yet another good reason why you should find a doctor who is willing to spend time to listen to your concerns. In truth, most patients do not have such a relationship — or any relationship at all — with their doctors.

chapter three: to treat | 51

making life taste better than steak In our television series, we followed a patient DEBORAH SCHWAB: It is very who had suffered from heart disease all of his difficult to change behavior. adult life. A hard-driving, successful business People like their vices. man, George [not his real name] had his first heart attack and bypass operation at 26, and a triple bypass at 35. He almost died of another heart attack at 40 and now, in his middle fifties, he lives with a stent holding open an artery. When we began filming him, his heart condition was so severe that he could hardly walk up a flight of stairs. Recently while boarding an airplane he suffered yet another heart attack. Effectively dead, he was lucky enough to be right near a defibrillation machine and was revived. With all this, George continues to eat a terrible, high-fat diet. He never seems to be able to relax and he has a large belly. It is tempting to blame him for not changing his ways but then we would also have to blame the vast majority of the American population who cannot or will not practice a healthy lifestyle. As one doctor put it, “Genetics may load the gun, but human behavior pulls the trigger.”

We have a population that is out of control. We know that eating properly, having normal weight, not smoking, and exercising are things that contribute to our good health. But when we survey the American population, we find that only 4 percent of women and 2 percent of men satisfy those four criteria. The other 97 percent of the population are practicing behaviors that lead to an accelerated risk potential for illness and disease.

WILLIAM MALARKEY:

Doctor Erminia Guarneri, a cardiologist (everyone calls her Mimi), is Medical Director and co-founder of Scripps Center for Integrative Medicine. George has enrolled in a program that she directs called “Healing Hearts.” The program provides a model for how medicine could be dealing with all chronic diseases.

In the Healthy Heart program we have a multidisciplinary team of professionals to work with an individual. I’m the quarterback, but as a physician, I can’t give the kind of attention that the team can give. In this program there is someone who can work with the patient to discuss his nutrition and show him how to cook healthy meals. There is someone teaching him yoga, meditation, and breathing techniques to lower his level of stress. We also offer group support where he can go and feel connected to other people in his situation and not feel isolated. So we are not just focused on the heart, we are really trying to help patients like George get their life back.

MIMI GUARNERI:

George could be a poster boy for all that is good and bad about modern medical care. He is alive today because of his open-heart surgeries and daily handfuls of expensive drugs. But up until recently, all of his hi-tech medical care only focused on that one organ, his heart. No one has helped him make the lifestyle changes that perhaps would have kept his heart healthy.

No one ever got to the root of George’s problems. No one had ever taught George how to do the things that could really change his life.

MIMI GUARNERI:



One of the things we have lost in medicine is the partnership between patients and physicians. We evolved in medicine an approach that says, “When you break down, we’ll fix you.” We do this instead of sitting with someone and saying, “Let’s take a look at why you’re here to begin with. What are your risk factors, and what can we do together?” When my patients know how much I care about them, and how I am committed to them, it gives them commitment for themselves. If I’m an invested physician, I expect you to be an invested patient. And now we become a team.

MIMI GUARNERI:

Many people come to us not believing that it’s possible to change. They may have read the latest magazine and tried a new fad diet, stuck with it a week, and because it didn’t work they feel completely defeated. That is how the partnership can help. Most of us simple humans need support, need people encouraging us. It is often baby steps. You might be able to get someone sedentary to begin walking their dog. Then you help the person get ready for the next level. There will always be setbacks — because it’s not easy. The important thing is not to give up. We know what we have to do with George. We have central weight we need to get rid of, we have a low HDL that needs to come up, we need to prevent diabetes, we need to get exercise going, to lower blood pressure and decrease weight. Knowing this is the easy part. The real challenge is to motivate him to make lasting changes.

the teachable moment Doctors work to preserve our health and cooks to destroy it. More often, the latter are successful. Dennis Diderot (1713-1784) French Philosopher

For a doctor to motivate you to change, she must get to know what makes you tick. That is where the listening pays off. Motivation may come from your faith in religion or your desire to live to see your grandchildren or fulfill your life’s ambition to visit the Taj Mahal. It is the job of your caregiver to discover what things will motivate you to change your behavior and strengthen it.

It may sound strange to put it this way, but you have to want to live. You have to decide that life tastes better than steak. How do we get you to feel impassioned and empowered about your own life? Many people, say, “Give me the drugs, and pass the bacon and eggs.” But just taking the drugs doesn’t get to the root of the problem.

MIMI GUARNERI:

The doctor’s wise advice will fall on deaf ears if it is not hooked to something that matters to the individual. Change is a very hard thing to do. The only time it works is when it comes from within. The hierarchical system — where the doctor knows everything, the patient knows nothing and is just supposed to do what the doctor says — doesn’t work. The patient must decide that this is what they care about in life. Only then are they ready to make the change.

TRACY GAUDET:

It means working with a patient to figure out what is the best treatment for that individual. That treatment has to be in concert with his or her beliefs and stage of life and relationships and so on. I need to be sure that I can communicate and explain to a patient what is wrong, what might be a series of choices about treatment and the range of outcomes. I need to do this because it is the person, the patient, the sufferer whose life is ultimately on the line and the decisions made have to be sculpted to that individual. Sometimes people may give up when actually there is a great chance to be cured. You, as a doctor, have to find out why they are giving up. It can make the difference between life and death for the patient. Without partnership you are driving blind.

JEROME GROOPMAN:



You must spend time with somebody during what medical professionals call the teachable moment when they are most compliant. It is basically that moment when someone is very ready to learn about what they need to do to achieve an outcome. If you hit them at the right point in time and have prescribed a program that is achievable, given their particular lifestyle, they are much more apt to sign onto it and say, “I can do this.”

compliance — taking your medicine

A Laotian man I saw in our clinic was a heavy smoker. He brought his daughter to me because she had recurrent ear infections. In spite of all the troubles he had had in life, he had this beautiful daughter who loved him and he loved her back, and he could be a good father to her. His child was the greatest source of meaning in his life.

RALPH SNYDERMAN:

DEBORAH SCHWAB, R.N. (BLUE SHIELD OF CALIFORNIA):

ELLEN BECK:

We had talked to this man about the fact that his heavy smoking was hurting his health, to no effect. Then his daughter asked him, in our presence, to stop smoking. I will never forget that moment. He did; he never smoked again. We had helped to make a connection between the problem that he had — his smoking — and the meaning in his life, which was his daughter. And when we helped him make that connection, he was immediately able to transform his life. I think, because of the pace of medical practice these days, or because we are not taught how, physicians miss that moment when we could help a person do something like this. How often do doctors sit there saying, “Why don’t you stop smoking?” It would have had absolutely no effect on the Laotian patient because he didn’t value his own health enough. His daughter was his life and, because of her, he stopped smoking. She is in college now. He comes by every so often and shows me pictures, and he gives me this big smile, and we remember the story from a long time ago...


It may be hard for you to alter your lifestyle but, as noted in the opening of this chapter, if you are typical of most people, chances are that you don’t follow your doctor’s orders to the letter. Non-compliance is a major problem in medical care today.

Congestive heart failure is an increasing problem in the United States today. In this condition, the heart doesn’t pump well enough to provide sufficient oxygen for the body to sustain itself. This is a major cause of death in people who have survived heart attacks. Five years ago, we analyzed several hundred patients that had been seen in very good medical centers who were being treated for congestive heart failure. We discovered this startling information. Fewer than 30 percent of them were taking their medications appropriately. The result was that they were having a lot of problems, suffering from many symptoms of the disease.

At Duke Medical Center, we wanted to see if we could improve this compliance. We established an intensive program in which we gave patients a book to record their weight every day to see if they were retaining fluids. We gave them a health care coach who would check in with them once a week to see how they were doing. With these simple interventions, we managed to increase compliance to 75 percent. The effect of the people who went from not complying to complying was dramatic. There was an incredible decrease in symptoms and we cut the cost of their care almost in half. We achieved all of this just by having people do what they’re supposed to do; changing their diet to minimize salt, weighing themselves to see when they were retaining fluid, and making sure they’re taking their medications appropriately. This study shows how important it is for individuals to take ownership and responsibility for their health care. The health care system must understand that it is our obligation to provide people with the tools that they need to take this type of ownership for their health. Some people with a serious illness may say, “You know, Doc, I don’t want to know anything. I’m putting myself in your hands; don’t tell me, this is all too scary.” That doesn’t work. I don’t want to terrify patients and I don’t want to overwhelm them with unnecessary technical information, but they do need to know what has happened because of their illness and what will happen during the treatment. I need them as a partner who is aware of what is happening.

JEROME GROOPMAN:


With chronic illnesses like diabetes or heart disease, health care necessarily involves a long-term relationship between doctor and patient. You must know a patient’s vulnerability factors, what sort of support system they have, and what are the conditions under which treatment can be best given. These factors will tell you what might lead to non-adherence, why people are not following difficult medical regimens.

ARTHUR KLEINMAN:

I think the reason that people experience trouble complying with a particular regimen that has been prescribed is that it is irrelevant to their lifestyle, or they don’t understand the effect of the medicine, or they just can’t take the medicine at the right time.

DEBORAH SCHWAB:

MARGARET CHESNEY:

Here is a specific example of how understanding a person’s situation has a direct bearing on compliance. In a big city, a study was done on bus drivers with high blood pressure and it was discovered that their blood pressure was not under control — a potentially life-threatening condition. All of these bus drivers were prescribed a diuretic, a drug that inhibits the retention of fluid. The side effect of taking a diuretic is that you must urinate frequently. But bus drivers must keep to a rigid schedule and are often caught in traffic and do not have the opportunity to take frequent breaks to use a restroom. So they stopped taking the medication and their blood pressure shot up. It took a really good clinician thinking like a detective to understand that this was the problem. Once they understood it, they could address it, both in terms of talking with the bus drivers about their schedule and prescribing other medications that would better fit into the lifestyle of someone who’s not able to use the restroom at their whim. In hypertension — high blood pressure — you have a disease that in most people shows no symptoms until they have a heart attack or a stroke. The drugs you give for hypertension often have side effects. From the patient’s point of view they are symptomless without the drug, but when they take the drugs, because of their side effects, they develop symptoms. They naturally ask themselves, “Why should I keep taking these drugs?” In fact, we have found that most people with hypertension do not follow the regimen. They don’t pay attention to lowering their salt intake and they don’t take the drugs on a regular basis.

ARTHUR KLEINMAN:


That is why I need continuous feedback about what’s happening. If I give you a medication, or a procedure is performed and we’re not partners, if you don’t recognize what might happen, if you don’t feel comfortable to report back to me what’s going on, that puts me, as your doctor, at a grave disadvantage. I cannot intervene quickly to limit a complication or to remedy something. If you are not enough of a partner with me to say you feel crummy or your energy is suddenly gone because of the drugs, I can miss something really important clinically.

JEROME GROOPMAN:

Ultimately, however, a patient with a very serious illness needs a feeling of hope in order to undergo all the trials and the treatments and the procedures. If they don’t have hope, if they despair, if they don’t believe there’s even a chance for them to prevail, then they won’t proceed with the prescriptions or the procedures. They will not participate in their treatment in the kind of active, engaged way that they need to in order to weather the illness and hopefully come out on the other end in remission.

owning your health We have this delusion that health care is somebody else’s responsibility. We can do anything we want in our lives and, if we get sick, the doctor is going to make it go away. Now, as an administrator who’s had responsibility for a large health care system, and as a physician who would love to invent a pill that can make all diseases go away, I wish I could tell you that it’s not your responsibility to take ownership of your own health care but, like it or not, it is your responsibility. The more tools you have to be able to take such responsibility, the more likely you are going to have good health and a good life.

RALPH SNYDERMAN:

If we think about somebody who has coronary artery disease or rheumatoid arthritis, we just do not have a single pill that will make that go away nor will we have one in our lifetimes. There are, however, strategies to make things far better. For the individual’s life to be as fulfilled, and as content and functional as possible, the individual — not the physician alone — needs to take ownership of what they do. Doctors can unclog an artery, but that is only a small part of the solution. Patients really need to stop smoking, they need to change their diet, they need to exercise, they need to reduce stress and become much more aware of what is happening in their body. So the responsibility is much more the patient’s than the physician’s. As physicians, we need to educate the patient so that they understand this, so that they take greater ownership of their health.


Some physicians do not always like their patients to be active participants. It takes more time. The patients have more questions. But in the end there have been a number of studies that show that when patients are active participants in their own care they do better.

DENNIS NOVACK:

The physician then takes on the role of a mentor, teacher, colleague, and partner with the patient over a period of time. Even if we have no silver bullet to cure these chronic illnesses, there are tremendous opportunities to improve the quality of life and to minimize the progression of disease and maybe even to reverse the disease. But to do so, the patient needs to be engaged.

RALPH SNYDERMAN:

This very engagement in itself can be beneficial to your health. One of the effects of having a serious illness is an increasing sense of helplessness. We interviewed Robert Jaffe, who as a physician was accustomed to being in control, not only of his own life, but also of the lives of others. Then he himself became sick with a life-threatening illness. He vividly describes his sudden feeling of powerlessness.

In the hospital before the surgery, I take off my clothes, and put them in a bag. I put on one of those ugly tattered gowns that they make you wear, where your rear end is showing. I lose all of my clothing and my jewelry and my money and my identification papers. I say goodbye to my wife, and then I lie down on the gurney and I am wheeled into the operating room.

ROBERT JAFFE:

An anesthesiologist comes to ask me what kind of drugs I would prefer for the operation. While he has this gentle Mr. Rogers voice, I also understand that he will be breathing for me, and keeping me alive during a period in which I would probably die with the amount of drugs that he must give me to prevent my body from feeling the pain of the operation. Then my arms are taped down on either side of the cold table in this crucifix position and I find myself in this incredibly dependent, vulnerable position. The IVs are put in my arm to get the fluids in and the monitors are attached to measure my oxygen level and my pulse rate. I look around and I see that I am the only person in the room without a mask. I will be the passive recipient of whatever is going to happen next... All serious illness can give people this terrible experience of powerlessness and vulnerability. You do not know when your muscles will freeze up, or when you might collapse or when the pain will strike.

When you are sick, there is a very real physiological response to feeling out of control. It is the same response that a human being, or any

TRACY GAUDET:


animal for that matter, feels when under attack. You’re in danger and your body goes into that fight-or-flight response, which we all know well. Basically the body says “something bad could happen and I need to be ready.” This triggers an entire cascade of intricate events — increased blood pressure, hormones — that put the body into a high-stress response. As we have seen, if that stress response continues over time, your immune system does not function very well and you are at an increased risk for a whole list of chronic diseases, everything from infection to back pain to migraines. And, of course, the stress will exacerbate whatever illness you are suffering from. All that comes directly from the sense of being out of control. Here is a perfect example which we see all the time. Someone has a heart attack that terrifies them. From that time on, every discomfort, whether it is a sore toe or a headache, is seen as potentially related to their heart and they panic. The doctor might smile at this but when a person has had a lifethreatening experience that has landed them in the emergency room, this is a real fear.

MIMI GUARNERI:

One of the goals of our Healing Hearts program is to give people enough confidence, enough information, so they can start to make decisions, not out of fear, but out of education. We teach patients how to listen to their hearts, to know the difference between angina and an ordinary muscle pain. If they do experience angina, they need to sit down and take a nitroglycerin pill. When you teach people, it takes away the fear. It gives them more power and control over the situation because they know how to respond. We’ve had countless people, who, before they came to see us, were going to the emergency room every week. (Think about how much that costs the medical system.) Our goal within the integrative center is to educate people so that they know how to manage what is going on — they know when they need to call their physician and when they really must go to the emergency room. We also give people a set of specific techniques to recognize the triggers, such as anger and stress, which can cause a flare-up. We teach them techniques of deep breathing that will lower their blood pressure and also lower their heart rate and put them into a state of relaxation. Longer term, they will learn to adjust their diet and not to drink caffeine which gets them all hyped up. At the same time we teach people how to exercise, do yoga, and meditate. We even teach people how to deal with their physicians — techniques like going into the interview with a written list of questions. All of these things empowers them and gives them the tools that will give them control.


(but don’t blame the victims) There is a dark side to this issue that comes from a misinterpretation of the preceding discussion. Every expert we talked to emphasized the point that, to some extent, you must become an active participant in your own health. But they also stressed the fact that it is not your fault if you get sick. Perhaps George with his heart condition, like most of us, did not take care of himself as he should, but he was also the victim of bad genetics. Some people live long and healthy lives rarely exercising and eating junk food while others who eat their spinach and run marathons are brought down by their genetics or a nasty virus. Whatever the case, feeling guilty does not help anyone cope with illness.

There is a very popular New Age mantra that negative thoughts can cause cancer — that negative thoughts lower your immune system and cause your tumor to blossom. I’m an expert on the immune system. I’ve studied it for almost 30 years. There is no solid, rigorous, scientific evidence to support this view.

JEROME GROOPMAN:

There is implicit in that claim, the pernicious message that you, the sufferer, are the cause of your illness. The reason, for example, that you got breast cancer was that you have a weak, negative, depressive character. You are flawed. The reason your leukemia is spreading is because you’re having negative thoughts. This does two things — it puts an added burden on the sufferer and it absolves the caregiver of the hard work and responsibility to try for a remission or a cure. Our health and our disease, ultimately, are bigger than we are. And while adopting all these new approaches and actively participating in our treatment, we must understand that none of us, the doctor in the white coat or the person in the hospital bed, can determine the outcome in its finality.

TRACY GAUDET:

People say to me, “I’m doing these alternative approaches. I’m doing this mindbody thing, and my cancer is still growing. So does that mean I am not doing it right?” These techniques are not about the newest magic bullet. They are not a cure. It’s not “if I just do enough imagery long enough and hard enough or enough meditation, I’ll never get sick, or I’ll cure my cancer or I will live forever.” That is not the goal. The goal is to create the optimal situation so your body can do what it can do in conjunction with the medication.


If a physician believes that the core of their work is to create an environment in which the person can take charge of their life, and achieve well-being, and if the physician practices respect and empathy — having some sense of what the patient might be feeling, this is a philosophy of interaction. Everything else is just tools: the medication, the diagnostic tests, the surgery, or even the tai chi and the acupuncture. Those are all tools and they’re good tools. But we must not make the tools the practice of medicine. The practice of medicine is the healing encounter with the patient.

ELLEN BECK:

alternative medicine that works Many people confuse the integrative medicine techniques practiced by most of the doctors we interviewed with alternative, New Age medicine — the herbs and potions and meditation and exotic remedies promoted in best-selling books and by the TV gurus. The sad fact is that many New Agers oversell their product by making outlandish claims of miracle cures. Their behavior alienates much of the scientific and medical community, some of whom dismiss the entire field as quackery. Doctor Arnold S. Relman is an articulate critic of alternative medicine and its advocates.

Until now, alternative medicine has generally been rejected by medical scientists and educators, and by most practicing physicians. The reasons are many, but the most important reason is

ARNOLD RELMAN M.D. (HARVARD MEDICAL SCHOOL):


the difference in mentality between the alternative practitioners and the medical establishment. The leaders of the establishment believe in the scientific method, and in the rule of evidence, and in the laws of physics, chemistry, and biology upon which the modern view of nature is based. Alternative practitioners either do not seem to care about science or explicitly reject its premises. Their methods are often based on notions totally at odds with science, common sense, and modern conceptions of the structure and the function of the human body. In advancing their claims, they do not appear to recognize the need for objective evidence, asserting that the intuitions and the personal beliefs of patients and healers are all that is needed to validate their methods.10 Dr. Relman is right to be skeptical. Many believers in the power of the mind claim cures for everything from toenail fungus to cancer. But these wild-eyed gurus, as Relman calls them, should not be allowed to discredit the whole mind-body field. There is, as we have seen, hard scientific evidence that some of these practices are effective. But even when the scientific data is ambiguous, many doctors who we interviewed are clear-headed enough to avoid throwing out the herbs with the bath water.

are disturbed that people choose to spend so much money on therapies that are frequently as overpriced as they are ineffective, but there is plenty of blame to go around. Doctors think nothing of prescribing drugs of limited usefulness that cost many thousands of dollars a year.

Whether they approve or not, your doctors must be nonjudgmental enough to discuss this subject with you if only because chances are your are already using some alternative therapies.

Some of these remedies could interfere with the treatment that a practitioner is prescribing. For example, from research that we have supported here at the National Institutes of Health, we know that St. John’s Wort interferes with various medications that people might be taking, such as protease inhibitors prescribed to persons with HIV. It also interferes with birth control pills. Many patients withhold the information that they are taking alternative therapies because they are afraid to tell their practitioners. We need to open those doors so that patients feel free to share this important information with their doctors.

MARGARET CHESNEY:

There is a full array of therapeutic potential beyond what we generally think of as a pill, a shot, a vaccination, or a surgical procedure. If something works and if it’s harmless it’s a reasonable thing to do if an individual is so disposed.

RALPH SNYDERMAN:

According to a recent government survey almost half of the American population regularly uses alternative and complementary interventions.11 Patients turn to alternative medicine because they are dissatisfied with the care they are getting from their doctors. Many also realize that conventional medicine does not SHELLEY ADLER: No one healing system have all the answers, particularly when is perfect. Perhaps we can enhance the it comes to treating chronic condisystems that already exist by borrowtions. Complaining to a doctor about ing concepts and strategies from other your lower back pain may elicit a healing systems. chuckle and the very unhelpful advice that you must learn to live with it. Attitudes like this are causing Americans to vote with their feet and their wallets for alternative medicine. Because most of these therapies are not covered by insurance, Americans spend more out of pocket money on alternative treatments than on conventional medicine — estimates range from 28 billion dollars to more than 50 billion dollars a year.12 Thoughtful professionals


Several studies show that certain kinds of group therapy involving women with cancer prolonged their life significantly and gave them a better quality of life. Knowing this definitely does not indicate that the therapist should tell a patient to stop chemotherapy — that they can just meditate and their cancer will go away. Absolutely not! But physicians can incorporate these approaches with modern medicine’s advances in technology, surgery, and drug therapy and put it all together so that their patients will have the best of both worlds.

ESTHER STERNBERG:

I would like to think that Western physicians are healthy skeptics, but not healthy rejecters of everything under the sun. I hope that they would be willing to help patients explore what works for them, what makes a difference, and what adds to the quality of their life.

ELLEN BECK:


A red flag goes up for me when the alternative therapist practices in a mechanistic fashion that makes the person feel as if they are a machine that is being repaired. I am much more supportive of approaches where you are learning a set of tools that improve your own quality of life. For example, with tai chi, you learn a series of exercises and movements that have been demonstrated to help with balance, flexibility, and peace of mind. Why shouldn’t we Western physicians embrace that? There is, for example, good data about using tai chi in treating the pain of shingles that we cannot effectively treat any other way. There is no medication involved, no pills, and no side effects. If tai chi can help in some way, how lovely. Why shouldn’t we allow ourselves to be supportive of someone exploring alternative therapies? Why are we so afraid?

include the influence of the caregiver-patient relationship, the setting, the environment, the patient’s beliefs and preferences. We know that all these factors have a big influence on the outcomes. Margaret Chesney is Deputy Director of the National Center for Complementary and Alternative Medicine (NCCAM) a division of the National Institutes of Health, the leading federal agency for health research.

When I was a medical student, I was taught that chiropracty was just bad — it was bad, period. It took me many years to discover that yes, there were problems but there were also some very good things that chiropracty could offer. If I had just accepted the prejudice of my training, I might never have explored where it is valuable and where it has limitations. I am generally skeptical, but I have a compassionate skepticism. I am open to the fact that certain therapeutics may actually do good without understanding how they work. But when some people say the treatment is effective because of some electromagnetic force that cannot be measured; or it’s related to a shifting of water molecules in an undefined way, that’s where I part company with them. I find pseudoscience offensive. I would just as soon say I don’t know how it works. I will accept mysticism to a degree, because we are not going to understand everything. Let’s just say, “Isn’t it wonderful that it works?”

RALPH SNYDERMAN:

Take homeopathy. There is no plausible explanation of how this could possibly work — by diluting something more and more, the medication is said to have a stronger and stronger effect. My colleagues’ eyes really glaze over when you talk about homeopathy, but there are about a hundred and forty randomized control trials, a lot of basic science that has been done to say that something is happening here. This gets into the area of what constitutes evidence. Medical researchers consider that the gold standard of evidence is the randomized, double-blind control trial. But another form of evidence is simply how well a patient is doing on a particular treatment — observational studies.

BRIAN BERMAN:

We must now take the next step and begin to try to sort out whether the good outcomes came from the actual treatments themselves or was it from what people would call the nonspecific effects of the treatments. These effects might


An important mission of the National Center for Complementary and Alternative Medicine is to support both the rigorous basic science and the clinical testing, to help both doctors and the public understand which complementary and alternative strategies are safe and which are effective.

MARGARET CHESNEY:

One project funded by this center was to study the effect of acupuncture in helping people with osteoarthritis of the knee. As with all medical testing the study used matched groups, one getting real acupuncture; a second group getting sham acupuncture — a procedure with all the trappings of the real thing but performed in such a way that the control group did not realize that they were not getting the actual treatment. Finally, there was a third group who just got educational lectures. All three groups continued taking their regular arthritis medicine.13

Our acupuncture for osteoarthritis study had all the bells and whistles of a really good clinical trial. After 26 weeks, we found that the patients in the true acupuncture group improved their physical functioning and they reported significant pain relief compared with the other two control groups. We showed, with scientific rigor, that acupuncture was safe and effective as an adjunct to regular therapy for people with osteoarthritis of the knees.

BRIAN BERMAN:


I think there are a number of complementary and alternative medical practices that sometimes challenge conventional medicine, because they don’t seem to work through the mechanisms that most of us are familiar with from a scientific perspective. This, in itself, is intriguing to scientists. The National Center for Complementary and Alternative Medicine (NCCAM) funds basic research to understand if some treatments work, why they work. With the project on osteoarthritis of the knee, the question then becomes: How did the acupuncture work? There is, of course, a traditional Chinese medical theory about acupuncture that talks about meridians in the body and balance — of energy or Qi.

MARGARET CHESNEY:

the reign of pain Each year 75 million Americans experience severe pain. Chronic pain, defined as pain lasting more than six months, afflicts 50 million Americans.14 Two-thirds of Americans will experience severe back pain during their lifetime.15 The National Institutes of Health estimated that pain costs the country over $100 billion per year in Take your fee when the medical expenses, lost wages, and lost productivity.16 patient is in pain. Fewer than one in four people suffering from Proverbs chronic pain receive adequate treatment.17

When one is living with pain on an ongoing basis it can be overwhelming and devastating. Your whole life has been disrupted, put on hold; your well-being has been taken away from you, because you are, for lack of a better word, consumed with pain.

GARY WALCO, Ph.D. (HACKENSACK UNIVERSITY MEDICAL CENTER):

Osteoarthritis is the most common form of arthritis affecting about 21 million Americans each year. It is a disease where we have a destruction of the cartilage and usually an erosion of the bone underneath it. The result is pain and difficulty in moving. There is no known cure for osteoarthritis.

BRIAN BERMAN:

NCCAM is intrigued by this but we are also armed with a new tool — functional magnetic resonance imaging (fMRI). We are funding research to look at the neurobiology of acupuncture. What is going on in the brain when a person is receiving acupuncture? With the fMRI, we are able to see and to trace pathways in the brain and explain, using standard neuroscience, how acupuncture could activate certain neural pathways that can reduce pain. When it comes to alternative therapies, as in all medicine, we must be able to separate the wheat from the chaff, what works and what does not. But research takes a long time — we will be studying acupuncture for many years. Meanwhile patients are suffering from chronic pain now and not getting satisfactory relief from conventional medical care. Patients need answers today.

BRIAN BERMAN:


If you suffer from chronic pain, you will have already discovered that standard medical procedures deal poorly with your problem. Pills are often only a temporary solution. Used long-term they can have toxic, even life-threatening, side effects. Expensive surgery often does not work. We end this chapter about treatment with the subject of chronic pain because it is in this area that the new approach to medicine that we have been discussing — whole-patient medicine with an openness to alternative treatments — shows real promise. Part of the reason that these non-conventional interventions can be so successful has to do with the very nature of pain. To you as the sufferer, nothing can seem more physical than pain. “Ouch, it is right here in my foot!” The truth is that all pain, no matter what its immediate source, is experienced in your head. As researchers are fond of saying, “The reign of pain is mainly in the brain.”

With pain the mind and the body are totally interconnected. All pain has some cognitive components. Thinking, memory, and emotion all affect how we experience pain. It is impossible to think about pain, or anything to do with preventing pain, without considering both the mind and the body. You can’t do one without the other.

LONNIE ZELTZER:


The classic proof that the brain is a key to your sensation of pain is the phantom-limb effect that some people experience after an amputation.

All of the sensation for movement, for touch, for temperature, for pressure, for itch — all of these sensations take the form of signals that used to go to a certain area of the brain. Even though you know your leg is not there anymore, you can still feel your leg moving, and you can feel itches on your leg, you can feel movement, et cetera, for about a year afterwards. If you had pain in that leg before you had the amputation, you are likely to develop what is called phantom-limb pain. This is because the templates of the old pain memory stay around in your brain even after you’ve gotten rid of the leg. It takes a while for those neural memory loops to go away.

The classic example is from the world of sports, where Donovan McNabb played the entire second half of a football game so focused on winning that he was not aware that he had just broken his ankle.

LONNIE ZELTZER:

In days gone by, people thought of pain as being a very simple system. When you were injured, the nerves from the site where you were injured would go into your spinal cord up into your brain and you would perceive it as pain. We now appreciate the pain system is phenomenally more complicated than that, and that your brain is extremely active in the process.

GARY WALCO:

Gary Walco is a specialist in pediatric pain. His patients include many children and young adults coming to him with pain from clear observable causes such as sickle-cell anemia and cancer. But Walco has also seen hundreds of young people coming to him suffering from excruciating pain with no obvious direct physical cause. Before coming to him, some of these patients were seen by many other doctors. These patients would have undergone extensive testing and, when the doctors could find no physical cause, they may have been told that their pain “was all in their heads.” Walco and other pain specialists reject this concept as meaningless since all pain is experienced in our heads. Walco suspects that these patients’ mysterious pain may have started with an external cause, such as a low-grade fever, but now the circuits indicating pain continue firing in the brain without any input from the rest of the body. They are experiencing a similar phenomenon to the neural memory loops in phantom limb pain. Whatever its source, because all pain is experienced in the brain, it can be tempered by the brain. MARGARET CHESNEY:

Most of us have experienced a phenomenon some time in our lives where we may have cut ourselves but we are so completely engrossed in a task — for example, dealing with some emergency — that it is only later that we feel the pain of the cut. That teaches us that there are cognitive powers that we all have that we can use to redirect our attention away from the pain.


It stands to reason that there may be techniques such as selfhypnosis by which we can teach people to redirect their attention so that they are able to manage their pain.

MARGARET CHESNEY:

During the making of our television series we met a remarkable young man, Matthew, an 18 year-old with cerebral palsy. All his life, Matthew has suffered from this crippling disorder of the muscles. It is not, however, a degenerative disease, and Matthew can look forward to a full life, but it will be a life filled with constant and at times excruciating pain. We filmed a fascinating sequence in which Gary Walco put Matthew into a light hypnotic state. What follows is a transcript from that scene:

GARY WALCO: Notice how it feels when the cool, dry air goes into your lungs. Just focus as you breathe. In. . . And out. . . In. . . And out.

Matt, are you in any pain or discomfort right now? MATTHEW: (in a light hypnotic state) Some — but not nearly as much as when we started.


GARY WALCO: Let’s see if we can reduce it even more. Nerves

are basically electric wires, they carry impulses they carry messages. And right where those nerves connect, I want you to see very clearly that there’s a dimmer switch. What I’d like you to do is turn the dimmer switch down. So that less of that pain message is getting through to your spinal cord. All of the tension goes out. (Waking him up) Five. Four. Three. Two. One. MATTHEW: Wow!!! GARY WALCO: The exclamation’s fine, but some details please. MATTHEW: That’s something. It definitely works. I was aware

of everything that was going on. But everything was kind of hazy, and my body was shifting its focus. As soon as I started lowering that dimmer switch, I could actually feel less and less of a reaction from those nerves, and those muscles . . .

In other sessions, Gary Walco teaches Matthew self-hypnosis to put himself into a hypnotic state to tune down his pain. He will never be pain-free, but his pain will be under control. As we have seen, just having a sense of control is a powerful weapon for anyone suffering from a chronic disease — controlling the disease rather than having the disease control his or her life. Emotions play a huge role in your experience of pain. The stomach pain from a serious cancer comes with an emotional component very different from exactly the same sensation if you have had too many pepperonis on your pizza. These two pains have very different implications for you. Naturally the cancer pain would be far more distressing which, in itself, would have the effect of amplifying the hurt that you feel. The distress that comes with your pain, however, can be alleviated through many of the techniques discussed in previous chapters. Doctor-patient interaction, the placebo effect, stress reduction, and alternative techniques can all have a huge impact on the emotional component of your pain and therefore your experience of the pain itself.

With chronic pain, a person might wake up every morning thinking “this is going be another terrible day, it’s always like this.” That in itself triggers a whole set of emotions. If the pain is associated with a disease like arthritis, there is the added emotional distress caused by a loss of function and mobility — of not being able to do daily activities they may have always enjoyed like playing golf or picking up their children. Now they are dealing with the frustration and the fear that they will be getting worse. The toll on an individual can be tremendous. They feel that there is no light at the end of the tunnel.

BRIAN BERMAN:

These things start to cycle on each other. The more depressed you are, the more you feel pain and the more you feel pain, the more depressed you become.

GARY WALCO:

GARY WALCO: Outstanding! MATTHEW: It was unbelievable!! GARY WALCO: You should know that all we did today were

the basics.



One method that Brian Berman uses to break this downward spiral is to teach patients suffering from this disease some basic yoga exercises and meditation.

It gives patients a chance to take a step back and not just to react, but to choose their pattern of reacting. Eventually, they come to realize that they may not be able to eliminate the physical pain and movement problems, but they actually can have great control over their emotions and mental suffering.

BRIAN BERMAN:

voices from the arthritis support program Imagine waking up in the morning and thinking, “today is Wednesday and I am not going to think one single negative thought.” Guess what? You’re going to be flooded with negative thoughts, because it is impossible to shut them out of your mind. This class has taught me to acknowledge all my negative thoughts and then move on. PATIENT ONE:

It is empowering for patients to realize that they don’t have to wait for that magic bullet — whether it’s an acupuncture needle or a drug — to realize that they have some control in their own hands and can to do something themselves. For many of my patients with chronic pain this is the defining moment, when they realize that they can help themselves. One effective technique used in the arthritis support group at the University of Maryland’s Kernan Hospital is called Mindfulness Meditation. This is a form of meditation that trains people to focus on the present moment — the here and now. The technique stops people from brooding about the past or having anxieties about the future.

It was very valuable for me to learn how to use meditation to process all these thoughts. Someone used the analogy that thoughts are like fish in an aquarium — like little fish swimming around in your mind. “Oh,” you think, “There goes that thought of anger. Oh, there goes that other one about anxiety and there goes the obsessing about the future.” Before you know it all those bad thoughts just leave you — they just swim away. Arthritis is unpredictable — some days, you’re great and some days, you cannot move. What this group showed me is that it’s really not worth it to spend so much energy being fearful for the future, because if you are living life based on fear, you are going to have so much more stress. And what a waste of the present.

PATIENT TWO:

It doesn’t have to be formal meditation. You don’t have to burn the incense, or wear a sari. It’s about learning how to slow down. I found that just contemplating a flower, or sitting and just taking the time to notice what’s around me whether it is ugly, good, bad, funny, or indifferent — that is what helps. It’s the whole idea of breathing, isn’t it? When you concentrate on your breathing, your breathing is right now. It is impossible to concentrate on your past breath or your future breath. When you breathe, you are right now. That’s how mindfulness meditation brings you to an awareness of your present moment. You are right here and now, the rest doesn’t matter anymore. Being in the present has been so powerful for me. I can find beauty, satisfaction, and fulfillment, now — today. I realize that I don’t have to be miserable. PATIENT THREE:



If you believe that what you are doing is going to take the pain away, it has been shown in experiments that this belief alone causes the release of chemicals in your brain that actually reduces how much pain you’re feeling.

JEROME GROOPMAN:

We can see that there is a full array of therapeutic potential beyond what we generally choose, beyond the pill or the shot or the surgical procedure. There are the standard therapeutics but there’s a heck of a lot more out there, many other strategies that work in addition to the more conventional ones.

RALPH SNYDERMAN:

There are many ways, for example, apart from drugs to reduce stress — meditation, yoga, exercise, prayer, social support, biofeedback, et cetera. But it is also important to remember that no one way works for all people. Meditation may relax me, but it may do nothing for you. You may prefer to read a book or lie on the beach or swim or jog. And no one way works for any one individual at all times in their life.

ESTHER STERNBERG:

what can you do? Here are a few more lessons that you, as a patient, can take from the previous chapters. TAKE RESPONSIBILITY

You are ultimately responsible for doing all that you can to improve and preserve your health. Make those lifestyle changes that will promote good health, getting help, advice, and support as needed. Your practitioner can provide information, medication (where appropriate) and encouragement, but it is your responsibility to follow “the program.” If there is some part of the program that does not work for you, talk with your doctor and perhaps together you can find an alternative. You have the power to maintain and improve your health. Paradoxically, this does not absolve your doctor of responsibility. The health care professional’s side of the bargain is to give you the best medical care available and to partner with you to make necessary lifestyle changes.

ELLEN BECK: It’s an empowerment philosophy — creating an environment

to help people take charge of their lives.

BE ACTIVE IN YOUR OWN CARE

ª Prepare for your visits. Ask questions.

I was called an alternative medicine physician because I teach nutrition and exercise to patients with a heart condition. Is that alternative medicine?

MIMI GUARNERI:

I was accused of wasting my time on “soft medicine.” What is the definition of soft medicine? Is it teaching someone how to eat to get proper nutrition? I don’t think that that is soft stuff. If it’s getting people back to doing some sort of movement, physical activity which affects just about everything in terms of one’s health, from diabetes to blood pressure to lipids, I don’t think that that’s soft stuff. If it’s listening to someone, and really understanding why they are stressed or depressed or worried and addressing their emotional issues, again, I don’t think that that’s soft stuff. The basis of medicine is to look at the whole person and to address all the things that are going on with that individual. I don’t define it as hard or soft. I think that it is just called medicine.

ª Do not accept treatments or lifestyle recommendations you cannot do, tolerate, or that are inconsistent with your core beliefs and values. ª Do not lie or conceal things from your doctor. If you find that you are consistently reluctant to tell your doctor the whole truth, ask yourself why: Are you afraid of your doctor? Do you feel like you have failed and are reluctant to reveal this “frailty”? Do you have a doctor that you do not trust? Partnership with your doctor means trusting your doctor enough to tell him or her of your successes and your failures, what works and what is impossibly difficult. Give your doctor feedback — without it, your doctor is “flying blind” and you will not get the kind of care that is best for you. ALTERNATIVE THERAPIES: SOME “DOS AND DON’TS”

ª If you choose to seek alternative care, avoid alternative therapies that suggest magic. Be suspicious of treatments that promise a total cure for a serious condition without risk or pain. ª Look for a doctor or clinic that blends both conventional and complementary therapies. These are often called “Integrative Medicine” centers.



ª Always tell your primary doctor what alternative therapies you are using (in fact always make sure they know about all of the treatments you are getting outside of their office). ª Refer to reliable Internet sources such as the Cochrane Collaborative, which brings together the worldwide literature on complementary, alternative medicine. [http://www.cochrane.org] This website has summaries, technical information, and a list of alternative therapies that have had scientific trials. This is “bottom-line,” very useful information. Remember that alternative therapies are generally an adjunct to conventional care and, in the case of a serious illness, are certainly not a replacement for standard medical treatment.

Readers are urged to consult the following websites for useful information and an expansion of the ideas expressed in this book. Our website [http://www.thenewmedicine.org] has a wealth of practical information as well as links to other sites. WebMD, [http://www.webmd.com] is a goldmine for reliable medical information, where you will also find resources for managing specific diseases. The website for The Bravewell Collaborative [http://www.bravewell.org] has articles and useful information supporting the practice of Integrative Medicine as well a list of health care centers across the country that practice Integrative Medicine.

FIND CARE THAT ADDRESSES THE “WHOLE PERSON”

The experience of illness is much more than having a diseased organ. It can affect every aspect of your life. Your doctor or health care provider should be sensitive to the changes you may be experiencing in all parts of your life. Whether you are suffering from a serious disease or chronic illness, such as heart disease, arthritis, or diabetes, or you just need to make some serious lifestyle changes to avert serious illness, search out doctors or clinics that care for your body, but also provide support for you personally. They should address (and help you find resources in your community to address) the larger issues that go along with serious illness and difficult lifestyle changes. These issues are often both physical and emotional. They can include learning to adjust to new physical limitations; issues of identity (“Who am I now? I used to be a healthy person, now I am a sick person.”); spiritual crises (“Why me?”); issues of failure and anger (“I just ate a quart of Rocky Road ice cream, after being so good for weeks!”)…to name but a few. Friends and family play an enormous and important role. But often, they cannot provide everything that a person requires. There are all kinds of resources out there. With a little research, you can find ones that will fit your needs — support groups, health coaches, programs to do at home, spiritual counseling, and a great many Internet chat groups devoted to providing encouragement and information for people grappling with particular diseases or issues. It is almost impossible to make difficult changes alone. Your health care professional should help and there is a community out there that can also provide enormous support.



chapter four

why don’t they? (treat us like human beings) As we have seen, there are so many excellent reasons why doctors should take the time to listen to, and to establish some rapport with their patients. It is not just a question of being nice. This rapport is essential for a proper diagnosis, necessary to establish an appropriate treatment plan and to ensure compliance. When dealing with a patient confronting a serious illness, it can make the difference between life and death. The question naturally arises: If any meaningful healing involves practicing this whole-person form of medicine, why isn’t this standard care? The answer we are often given is that medical care is in triage mode; therefore the system cannot afford empathy. A doctor’s time is too expensive. Cost is indeed a consideration, but, as we discovered, often it is not really a question of money, but more one of how medical care money is allocated. A further answer comes from the grueling process by which doctors become doctors — the medical education system. Medical students rise to the head of the class because of their technical and scientific skills, not because of their capacity for compassion. They don’t treat us like human beings because, in school and on the wards, they have never been taught how. Lurking behind the questions of costs and education is a much deeper issue — that of the medical ethos. Much of what previous chapters have discussed — the mind-body therapies, the act of listening and building a bond of trust and a partnership of healing — is not what many medical professionals consider to be their job. They will tell you that medicine is about fixing broken bodies, not about repairing broken souls. In the final analysis, medical care has become dehumanized not because of money or education. The human side of medicine is slighted for the simple reason that many doctors do not think this way. It is not in the medical culture. As the researcher Ronald Glaser told us when he was confronted with that experimental proof that a person’s mental


state influenced their immune system, “I didn’t believe it! It was just not within the framework of how I used to think about the universe.” For many medical professionals it still is not.

one – empathy is too expensive Is the lack of physician empathy really simply a question of cost? Is it really cost effective to spend only six minutes talking to a patient with a serious illness? Is it really cheaper to treat the end effects of an illness rather than to teach prevention? The obvious answers have more to do with how our medical care is paid for than any question of absolute cost. For example, hospitals get reimbursed for emergency-room visits but are virtually not reimbursed for preventive programs.

Take the case of a patient diagnosed with diabetes. A physician who takes the time to explain to a patient the terrible side effects of not controlling their diabetes — heart disease, blindness, the loss of limbs — who instructs them on what they must do to prevent these side effects, gets almost no reimbursement. But if that person goes on to destroy their kidneys by not controlling their blood sugar, physicians and hospitals are very well paid for providing hemodialysis or performing a kidney transplant. This makes no sense whatsoever.

RALPH SNYDERMAN:

It makes even less sense when we see the numbers. The annual current cost of treating the almost 400,000 Americans with kidney failure is $18 billion.18 It requires knowledge and discipline to control one’s blood sugar, but many of the end effects of this disease could be prevented if patients with diabetes received effective support and continuous follow-up along the lines of the Integrative Medicine model of the Healthy Hearts program described in chapter three. The shocking fact is that 60 percent of all newly diagnosed diabetics get no follow-up care at all. When complications develop, the result is enormous suffering for patients and an enormous expense for the medical system. Hospitals get little reimbursement for the $70 per hour that it costs for a session with a diabetes educator but do get paid for the $10,000 to $30,000 it can cost to amputate someone’s right leg because this person was never properly supported in how to control his or her blood sugar.19 When we asked one doctor to explain this illogical system he blamed the insurance companies and then, tellingly, asked to remain anonymous because, “I need to pay the mortgage.”

chapter four: why don’t they? | 81

The reason is clear. If I am running an insurance company, I am not interested in paying for something now that will show a benefit 20 years from now. We know that we can prevent heart disease by working with adolescents, getting them to change their diet and exercise patterns but that will not have any payback until they are 60 years old. Insurance companies are businesses and they want an immediate return on their shareholders’ investment. They are focused on things that will show a benefit in 12 months, not in 12 years. So prevention goes out the window.

ANONYMOUS DOCTOR:

In countries with a single-payer system such as Canada or England, there would be a clear economic advantage to institute a policy of preventative medicine. It would directly save the entire system large sums of money. And yet, even in these countries, with some exceptions, the fee schedule does not reflect prevention as a priority. In this respect, these countries are bad but the fragmented American system is worse.

Here is a specific example we found at the Duke Medical Center. Asthma is a chronic disease that we see frequently in our emergency room. But this is not a disease that you can deal with effectively or humanely if you wait until the person comes in short of breath, turning blue, and wheezing. I was interested in trying to understand why we were getting repeated emergency room visits from individuals having asthma attacks.

RALPH SNYDERMAN:

We did a demographic study of Durham County, Wake Forest, and Chapel Hill, and we discovered that almost all these admissions were coming from two small neighborhoods in the most impoverished part of Durham. These individuals came from the areas of the community that have the least access to the health care system, the least access to information about what could be done to make things better for them. The result: children with no health care, living in poor environments with pollution and other factors that worsen their asthma have repeated attacks that are so bad that they must come to the emergency room. This is not the way we ought to be practicing health care. This is not compassionate, it doesn’t make any medical sense, and it doesn’t make any economic sense. And, as medical care lurches from one short-term patch to another, the entire system is going bankrupt.

The health care system costs the country more than $1.7 trillion. One-seventh of our economy is expended on health care; almost three-quarters of those expenditures are for treatment of chronic disease, often late stage chronic disease where people are already suffering from the end effects of their disease, and the chances for reversibility are low. Spending, as we do, more than one trillion dollars on late-stage diseases is not cost-effective.

RALPH SNYDERMAN:


And now we have 80 million aging baby boomers entering the system looking for answers to their problems. So we know that we need to change how we deliver health care.

BRIAN BERMAN:

But we need to have the will, the energy, and ultimately the political support to change things.

RALPH SNYDERMAN:

Part of the high cost of medicine is due to the high cost of hi-tech. Frequently people are given elaborate tests for conditions that could be easily diagnosed if the doctor would ask a few simple questions. In part, due to the Byzantine payment structure of medicine — where nobody pays for medical care yet everyone ends up paying — many of these tests are dispensed without any thought about the expense. The same is true for treatments. Expensive drugs and procedures are prescribed when inexpensive, alternative therapies could be more effective.

Our health care system will pay for medications; it will pay for emergency-room visits, for procedures and hospitalization. Under the present system, we have a huge population of people who are stressed, whose bodies are breaking down, and who have lots of symptoms, including chronic pain. Patients go from doctor to doctor trying to find out what is wrong with them. They are getting all of these expensive tests, X-rays and MRIs, and may still end up in the hospital.

LONNIE ZELTZER:

It can be highly cost-effective to pay for noninvasive, stress-reducing, preventative measures. Meditation or yoga classes, a once-a-week massage, are inexpensive items compared with an emergency room visit or a hospitalization, but because our health care system operates with a biomedical model, we don’t yet see the value of paying for these low-tech, low-cost mind-body interventions. An intellectual shift needs to take place so that doctors can see patients holistically. But we also need financial and systemic shifts, in terms of how these problems are addressed, and how they are paid for.

GARY WALCO:

Right now, we have a very expensive disease-care system, not a health care system. And we don’t have as our mission allowing everyone in the country a chance to live the fullest and healthiest lives they can. In the end we have to look at the goals of medicine. Along with that pursuit of happiness, people also have a right to be healthy.

ROBERT JAFFE:


It is not just patients who are unhappy with the medical system. Doctors too are suffering from the growing financial and work pressure.

Medicine has undergone a sea change in the last decades. The HMOs and the insurance industry are now in control. The profession used to have a high satisfaction rate but now survey after survey shows doctor burnout and dissatisfaction.

ARTHUR KLEINMAN:

Because of the corporate control of health care, many physicians, particularly family physicians and other primary care physicians, are running at such a pace that they no longer feel they are giving good care. If they really want to be a good doctor to each person, they end up staying at their clinics until late at night to finish their notes and make their call-backs. In the current managed-care system, the rule is faster, faster, faster. With all the complex constant regulation, filling out this form, phoning here, doing follow-ups there, doctors start to feel like little hamsters running in a cage and they burn out. We see excellent, caring physicians giving up and choosing other careers.

ELLEN BECK:

Until we can solve this time crunch, until we recognize at all levels that people and their lives don’t fit into 15 minute time slots, we will see the humanistic practice of medicine continue to be eroded. It has become very hard to practice compassionate medicine in America. The system is broken. We went into medicine because we care about people, because we want to give support to human beings, but all those things that we love and are passionate about are getting chipped away. And then there are so many boundaries and restrictions. It beats you down and you lose your soul.

TRACY GAUDET:

two – the basic training of medical students When our students enter medical school, they are starry-eyed, they’re romantic, and they are optimistic. They appear to be entering medicine for all the right reasons, really wanting to improve the lives of others. There is a transformation that occurs in medical school that hardens many medical students.

RALPH SNYDERMAN:

Our students come in really wanting to help people. It may sound trite but I think it’s actually true: most of our students come in ready to express themselves as caring individuals. Too often much of that gets beaten out of them in medical school.

DENNIS NOVACK:

Medical school tries to cram every possible piece of information in the students’ heads. But still, many subjects like nutrition and mind-body issues are just not covered. The excuse that many schools give is that there is more important information for students to learn. Yes, you need to know the Krebs Cycle, and you need to learn about mitochondria and about all the bugs that cause infection. Of course you need to know all of that but I realize now, after 20 years in practice, that you also need to know how to talk to someone. You need to know the language to use when you are delivering scary information. You need to learn how to motivate someone.

MIMI GUARNERI:

I have been a medical educator for three decades. I will be honest with you. The human side of medical education has been a failure. After the first two years of school, when they are taught theory but have very little contact with patients, the students then go onto the wards where they’re trained by the residents. Residents in hospitals are basically survivors. I was there; I know what it means to be a survivor. You spend all these hours during the day and night overwhelmed by the number of patients, and running around between tasks.

ARTHUR KLEINMAN:

There is a “treat ’em and street ’em” philosophy on the wards. The wards can be so busy and chaotic that the residents want just to treat the disease, get the patients better, and send them out quickly because every patient under their care means a lot more work.

DENNIS NOVACK:

In effect, these medical students are being given a course by the residents in survival skills — shown how to cut corners. And as they learn to survive they are taught to forget their humanity. The process of going through medical school is a process of disabling doctors.

ARTHUR KLEINMAN:



If it were only possible to take these young people just as they are when they enter medical school and, in some magical way, put all that knowledge, all those techniques, all that skill into their minds without changing them in any way, they would be the kind of physicians that we all dream of having with us when we are in need.

RACHEL REMEN:

In medical school students are trained to be technicians and experts. They get approval for their intellect; they don’t get as much approval for their heart, intuition, or spiritual perspective. They are taught that things expressed in numbers are truer than things that can only be expressed in words or things that cannot be easily expressed at all but only experienced. By focusing so narrowly on the science and the expertise of medicine, they end up giving away a lot of their power to make a difference in people’s lives.

We teach the students an appreciation for the importance of communication, of expressing their caring, of spending time with patients and getting to know their questions and concerns, of helping patients to heal.

DENNIS NOVACK:

The process of becoming a physician does transform you. You see things that no one else sees except maybe in battle. You hear things that no one else hears. Patients will tell you things they have never told anybody else and sometimes they are horrible, upsetting things. At the end of the day, you can feel spent and worn out. But you can also feel privileged and invigorated. We want to support that. I teach the students that, as long as they have a decent knowledge base, they don’t have to know everything, but they must know what they know and what they don’t know and how to ask for help. If they are compassionate, thorough, conscientious, and humble they will be good doctors.

ELLEN BECK:

There is some hope in this area. Now all students taking their National Medical Board exams must be tested in their communication skills along with subjects like anatomy and biochemistry. We filmed Dennis Novack supervising harrowing sessions in which young medical students must face very skillful actors and actresses, yelling, arguing and crying very authentic tears. Dr. Novack’s stated goal is to “immunize” first and second-year students against the negative training they will get on the wards.



three – the culture of medicine

Science and technology have changed all that. Now we can see how the nervous system extends from the brain to every organ and down to individual cells. But the old thinking, that emotions and feelings are exclusively the dominion of psychiatry, persists. It is deeply ingrained in the medical culture that medical doctors should deal only with the body — that a patient’s feelings or mental state is just not their department. Doctor Robert Baratz, President of the National Council Against Health Fraud, is representative of the many medical professionals who remain contemptuous about using mind-body therapies like yoga to help treat a serious illness. He commented, “It gives some people peace of mind or makes them feel better but there is no medical or plausible mechanism by which it affects the disease process.”20 The second part of this statement is debatable; the first part is astonishing. Is not an important object of any treatment to give people peace of mind?

Scientific, biologically based medicine has been enormously successful at curing illness in the last century. By looking at the body as a physical machine, researchers have developed the tools to cure many of the ancient scourges of humankind. Smallpox, which periodically wiped out one tenth of the population of a country, has been eliminated from the face of the earth. Tuberculosis, another major killer, and many other infectious diseases can now be easily cured with a course of drugs. Worn-out joints, heart valves even whole organs are regularly replaced. We owe much to scientific biomedicine. We live longer and fuller lives with all those pills and stents and titanium hips. Traditional medicine handled mental illness by dividing us into two separate and supposedly independent systems — mind and body. For problems of the body you were sent to a body doctor who worked on your physical ailments. For problems of the mind, you were sent to a head doctor who talked to you and got you to deal with your thoughts and emotions. Doctors did not deal with a link between mind and body — emotions and illness — because this connection was invisible to scientists. As Esther Sternberg explains it, “They could not understand in scientific terms how something like a thought (we don’t even know what a thought is) could affect something as concrete as health.” In the past, researchers did not yet have the means to detect the hormones and electrical signals by which the mind interacts with the functioning of the body. They considered the influence of emotions to be outside the realm of physical medicine.


I once attended a debate in which a strong believer in the biomedical model was attacking the whole concept of alternative medicine. At one point in the debate, he was pounding his fist on the table and saying, “It is not the job of the doctor to make the patient feel better!” I was stunned. He was saying that it was not his job to pay attention to a person’s mental or emotional wellbeing. How can we separate the patient’s body from the rest of who they are — their emotions, their relationships, and even their spirituality? Although I know there are many doctors who make that separation, it is inconceivable for me to treat a patient in that way.

TRACY GAUDET:

I am a wonderful example of being shortsighted in this respect. I love science and I love technology and it can be used for great good. But from the patient’s point of view it is unsatisfying if all they get from a physician is a prescription and a procedure and they don’t get emotion and they don’t have contact and they don’t feel the partnership. It is hollow and it is empty.

JEROME GROOPMAN:


chapter five

to heal

The second group, matched to the first in age and social circumstance, was under relatively low stress. The Glasers discovered that the skin wound took measurably longer to heal in the high-stressed group — a full nine days longer. They repeated the experiment with students on summer vacation and the same students who were given a wound three days before a final examination. Again the wounds healed significantly faster when the students were under lower stress.

You cut yourself, you get a wound and The wound that bleedeth inward is the body repairs itself — in other words, most dangerous. the wound heals. It may seem like a John Lyly (1554-1606) English Dramatist completely physical process but perhaps the most surprising revelation of our television series was seeing direct scientific evidence of how a person’s mental state has a direct impact on the healing of a skin wound.

wound healing The repair of your cut is an amazing choreography of biology. The first responders at the site of your wound are cytokine cells, which cause inflammation and kill any microbial invaders. Other cells are then sent to the site to clear away the debris and yet other cells go to work to repair the area. Every step of this complex process must turn on and off at the right time. If the killer cells linger too long, for example, they will begin to destroy healthy tissue. This whole process is regulated by the hormones of your immune system, which in turn, as we have seen, is influenced by your emotional state, particularly your level of stress. This raises an interesting question: Could your level of stress actually determine how fast you heal? Ron and Jan Glaser designed an ingenious experiment.

In our first wound study, we used a biopsy punch instrument to create a skin wound about the size of a pencil eraser. We photographed a standard-size dot next to the wound and then we photographed the wound each day as it shrank and healed. Comparing the dot to the wound, we could measure exactly how fast the wound was healing.

stressed

unstressed

These simple experiments have profound implications for your medical care. If the tiny wound given by the experimenters heals significantly faster when you are under lower stress, it stands to reason that the will heal significantly faster if you can keep your level of stress low before and after the surgery.

A large body of literature suggests that when people are more anxious or stressed before surgery, the post-surgical outcomes are a lot poorer. Patients will need more pain medication and they will suffer more post-surgical infections. Unfortunately, I am not aware that hospital practices have changed substantially even given this research.

JAN KIECOLT-GLASER:

JAN KIECOLT-GLASER:

The Glasers gave these small wounds to two different groups. The first group was caregivers to a parent or spouse with advanced Alzheimer’s disease. These people were under high and chronic stress.


Indeed, virtually nothing can be more stressful than going into a hospital for surgery. Hospitals are noisy, chaotic, terrifying places. Sometimes it seems as if there is a conspiracy afoot among the staff to maximize the patient’s stress level.

Look at one of the things that we routinely do preceding a surgery. Just when the patient is feeling at their most vulnerable waiting for their surgery, the doctor, the person in a position of power, comes in their white coat and

TRACY GAUDET:

chapter five: to heal | 91

spells out every one of the possible bad things that can happen because of the surgery. That is the consent form that we must all sign. Talk about communication and the power of the spoken word! The last thing we should be doing immediately preceding the surgery is implanting those concepts into the patient’s mind, because we know that they have a powerful impact on the patient’s psychology and even on the potential outcome of the surgery. For any planned surgery, you could get an informed consent days or weeks before the surgery, but for logistical reasons that is not the way we do it. Instead we use the power of the spoken word to implant in peoples’ minds the most terrible of outcomes — paralysis, loss of a limb, even death, and then you say, “Now, let’s go have the surgery.” It’s crazy. Hundreds of studies have proven that very small, highly doable interventions can positively influence the outcome of a major surgery. Here, in the cold, clinical words of a science magazine are the astounding results of one study performed several decades ago.

View Through Window Influences Recovery From Surgery Records on recovery after cholecystectomy of patients in a suburban Pennsylvania hospital between 1972 and 1981 were examined to determine whether assignment to a room with a window view of a natural setting might have restorative influences. Twentythree surgical patients assigned to

rooms with windows looking out on a natural scene had shorter postoperative hospital stays, received fewer negative evaluative comments in nurses’ notes, and took fewer potent analgesics than 23 matched patients in similar rooms with windows facing a brick building wall.21

such as a staff member meeting you to guide you through the admission procedure. The hospital has family rooms where family members can sleep if necessary.22

Simple things will help patients feel more relaxed, procedures such as having a doctor or nurse spend time talking with patients telling them what to expect, and making sure their questions are answered.

JAN KIECOLT-GLASER:

It is logical. If you have information, if you are an informed patient knowing what you will be going through, you will be less concerned, a little less scared, as opposed to going through a procedure where you have no idea what to expect. It doesn’t take a rocket scientist to figure out how this might work.

RONALD GLASER:

We have already seen how giving patients a sense of control and lowering their stress can have an enormous impact on the process of healing, but we have also seen how these important aspects of care are not treated as a priority by the medical establishment. At some fundamental level even the science of mind-body healing as demonstrated by the Glasers is not accepted by medical administrators. There is, however, one powerful group that is very concerned with a patient’s mental state and how it affects their healing — the people who have to foot the bill. We met with Deborah Schwab, an executive with Blue Shield of California, a huge insurance company, in their corporate headquarters in a skyscraper in downtown San Francisco.

Many studies in the clinical literature have looked at how stress can affect healing. On a very common-sense level, I can see how the more stressed a patient is, the more slowly they will heal and the more the patient may be susceptible to complications.

DEBORAH SCHWAB:

Not all of us can be promised a sylvan view out of our hospital window, but a great number of simple changes could make your hospital visit less stressful. These include subdued lighting, the use of earphones instead of blaring patients’ television sets, the staff wearing silent pagers instead of everyone being subjected to the public address system with its constant and urgent announcements. Hospitals such as Woodwinds in Minnesota are models of what can be done. A public hospital, it is completely organized to provide “the optimal atmosphere for healing and recovery” with not only soothing architecture and a low noise environment but little details



I was intrigued by these studies, and having been trained as a nurse, I was a little more open to these kinds of interventions. It’s something that nurses focus on — the caring aspect, the nurturing side of the health care system. But I’ve also had a scientific training, and the scientist in me said, “Show me the proof.” Blue Shield could not subscribe to this concept, and could not base a whole program on it, unless there were some measurable results. The program that Deborah Schwab was investigating was for Blue Shield to supply patients about to go in for major surgery with a special CD or cassette tape to listen to. The audio program employed a wellknown technique, similar to meditation, called guided imagery.

The benefits were startling to us from a financial perspective. The tapes retail for $17.95. The average total billings for members who used guided imagery before the hysterectomy operation was $2,000 less per patient, compared with those who did not use the guided imagery.

DEBORAH SCHWAB:

The savings came from the decreased use of medication including pain medicine, and slightly shorter average hospital stays. Blue Shield and many other insurance companies across the country now routinely supply patients about to go in for major surgery of all kinds with these audio programs.

VOICE ON A GUIDED IMAGERY TAPE:

You find yourself in an operating room — completely relaxed. You step outside of yourself and watch, as the team competently and skillfully prepares for the operation. You see them at work and you feel a sense of calmness and trust...

Guided imagery is a mind-body technique that focuses people’s thinking on a positive outcome for the surgical procedure. The closest analogy I can use is the mental rehearsal techniques that Olympic athletes use before a competition to improve their performance.

DEBORAH SCHWAB:

Blue Shield decided to test the efficacy of these guided imagery audio programs on 900 patients about to go for a hysterectomy; then the company followed up with a survey of the reactions from the patients.

In spite of some initial doubts that this was a little bit flaky, a little bit too “California” for some people, it didn’t turn out to be that way at all. We got hundreds of completely unsolicited phone calls and letters from our members thanking us for having this program. They described some very heartwrenching experiences about feeling extremely anxious, unable to cope with the waiting period prior to their surgery. Then, after listening to the tape or CD, they were able to focus their energy on preparing themselves for this surgical procedure and felt much more confident.

DEBORAH SCHWAB:

This talk of “focusing energy” may sound very New Agey and “flaky,” as Deborah Schwab put it. One can think of many uncomplimentary adjectives to describe executives of large insurance companies, but “flaky” is not one of them. They have their eye firmly on the bottom line — and the bottom line of this trial was a revelation for even the most skeptical.


Huge savings from a $17.95 tape… Imagine how this financial saving (and an equally huge saving in human suffering) could be amplified in the thousands of hospital procedures done every day if the staff would spend a bit of extra time reassuring patients and if hospital procedures could be slightly rearranged to make patients feel more at ease. It is not surprising that many of the doctors with whom we talked in the course of making this series ended the interview shaking their heads in frustration.

I am infuriated that this is not the standard of care. Every single patient going to the operating room should be informed that the mind has a huge impact on the body and there are ways that you can take advantage of that. But it is not being done.

TRACY GAUDET:

If we could get the same results from these mind-body approaches that we get from a pill, it would be mainstream in a heartbeat. But because it lies outside the paradigm of what we think of as medicine there is this preconception that these things are not real, that they are not powerful. We have a long way to go.


healing from illness The second meaning of the word “healing” refers to how a doctor can help you deal with a serious, chronic or terminal illness. Healing in this sense means coming to terms with your illness.

One of the hospitals in my town ran a series of ads about the great care they offer. They showed pictures of smiling middle-aged people, coming in for hip or knee replacements, and then they would show these same people playing tennis and handball, riding horses, or skydiving. These ads promoted the illusion that you can go into a hospital, have a body part replaced and then go back and be just the same as you were before you got sick, or even better. It is as if we are all built in a Ford factory and you can have a piece replaced, and everything goes back to normal again.

ROBERT JAFFE:

The healing process doesn’t work like that and medicine doesn’t work like that. Illness is a transformative event and, even if everything works out perfectly to the doctor’s desire, every patient comes out of the experience a different person. I once had a patient with pneumonia who had to be in the hospital for a few days. She had an uneventful recovery but after she went home she became depressed. I couldn’t understand why her illness did that to her. I do now. She was a very healthy, independent person, and this was the first time that she came face-to-face with the fragility of health and needed to depend on other people to stay alive. So even patients who are cured may experience a new sense of vulnerability about their lives. They may feel suddenly inadequate, dislocated, not the people they once were.

DENNIS NOVACK:

Look at the example of someone who is recovering from cancer. After the conventional treatment some doctors will say, “We finished your chemotherapy. You’re done. Hurray, you’re alive. Go live your life!” But this patient still has to deal with the impact of that disease on their life.

TRACY GAUDET:

is so much we can do as physicians through our words and through our listening, and that is what healing is all about. Even when our patients are dying, we can help them come to some completion in their lives. They may have unfinished business, they may have a lot left over that they regret. We can listen to these things and we can counsel them, not only help them cope but perhaps inspire them. In doing this we are doing a tremendous service to our patients. We are helping them heal even though we can’t cure them. We lead privileged lives as doctors. Our role is to enter a person’s life when a serious illness forces them to come to grips with tragedy, with loss, with pain and suffering. Most of the time the doctor can do something to alleviate some of the hurt, but even when you can’t stop the suffering you can help in dealing with the meaning of the illness. You can be a guide to people coming to terms with their catastrophe.

ARTHUR KLEINMAN:

When I first became ill, I thought it was the end of my life and of all my dreams. And everyone around me also thought it was the end of any hope of my having a meaningful life. The reality was that it was just the beginning of everything. What I discovered was that because of this, the life that I have lived is far larger than the life I had dreamed of living. I don’t think that I would have anything important to share with you if I hadn’t developed an incurable illness 52 years ago.

RACHEL REMEN:

There are certain things that I will never have because of my disease, important things, but other doors I didn’t even know existed opened for me, and because of this, they opened for a lot of other people as well. There’s a kind of a courage that grows in you with illness. I am not afraid of what most people are afraid of. And this lack of fear has allowed me to accompany people as they discover who they are and what they’re made of and to be there with them in profound ways that I would never have been able to do if my own illness hadn’t made me ready to do it.

There are many times, unfortunately, when we can’t cure people. There are one hundred million people in this country today who have chronic illnesses, who are either stable or getting worse. But we can still help those people. We can help them cope. We can help them see new possibilities for their lives, even when they are struggling with a terrible chronic illness. We can help patients see the good possibilities for the future. We can help them overcome some of the demons that continue to haunt them throughout their illness. There

DENNIS NOVACK:



the power of hope REYNOLDS PRICE: I notified all (my friends about my serious illness) and I thought I could sense their hope like a firm wind at my back. It felt like the pressure of transmitted courage, sent from as far off as Britain and Africa; and that was the thing I needed most at the time. The music of others was the first big weapon in my battery of healing, my own campaign to outlast the tumor. 23

When I was a resident, I was overseeing this particular intern in our family medicine department who had as a patient an elderly woman with lung cancer. I was with him when he said to her bluntly, “You know of course that you’re dying.” You could just see her face and her whole demeanor change. She looked at him with a fury and said, “You have no right to do that to a person!” And she was right. Basically what he had said took away all her hope. Underneath it all, she knew that she was dying, everybody knew it, but it was those words… All she wanted was to keep the hope alive, the hope that was letting her get out of bed in the morning. That scene has stuck with me all these years.

There is a biology of hope; it has an effect on your body. It can have a very powerful effect on how much pain you have, on your respiration, your heart, your muscle tone. There’s a whole series of studies that demonstrate this fact.

JEROME GROOPMAN:

BRIAN BERMAN:

Every patient comes to a doctor primarily looking for one thing, and that is hope. Hope is really central in the experience of illness and in the path to healing. People often confuse hope with optimism. An optimist says “everything is going to turn out just fine.” Well, you know, we’re adults and we know that things often don’t turn out just fine. In fact they turn out very poorly.

JEROME GROOPMAN:

Hope is different. Hope is clear-eyed. It sees all the reality that you face, all the obstacles, all the problems, all the potential for failure. But through that, it sees as well a possible path to a better future. It’s not guaranteed, but it’s possible. Healing means that you’re made whole again, that you emerge from this experience of illness not just with your tumor shrunk, which is certainly a major goal, but with you being restored as a person.

Hope is realistic because it sees medicine for what it is, as an uncertain art. Nothing is absolutely determined in biology, because there is a great variability from individual to individual and treatment to treatment and how that treatment works in any particular individual. Even some of the most dire diseases occasionally can remit. In the end, hope is the key to healing. It means that you are made whole again, that you emerge from this experience of illness having been restored as a person. This fact needs to be taught and honored and reinforced. It can’t just be glib lip service. The doctor just can’t say, “Sure, yeah, the patient’s emotions are important, “Let’s make an appointment with the social worker.” Social workers are great; social workers have been cleaning up the messes that doctors like myself have made all through our careers. We must stop cutting ourselves off from our patients’ emotions. They become an essential part of our work when we realize that we don’t just do science. Medicine is also an art.

In the case of chronic diseases, the individual’s sense of how it’s going to turn out is very often a major factor in terms of how in fact it does turn out. If an individual feels helpless or hopeless, they are much less likely to be cured or show a major improvement in their condition than somebody who is optimistic and tends to think that they will be able to get through this.

RALPH SNYDERMAN:



In the foreword to this book, the actress Dana Reeve (wife of the late Christopher Reeve who has, herself, just been diagnosed with lung cancer) explains that illness, alas, is a great teacher. As she discovered, there is a huge difference between knowing something intellectually and knowing it in your heart. These are the cruel lessons of experience. This is especially the case when doctors themselves get a serious illness and are given a taste of their own Western medicine with all its shortcomings. We end this chapter with one of these stories. Chronic illness is a horrible experience, and it seems ridiculous to point to the positive aspects of the ordeal. In the first-person story that follows, however, we see a doctor coming to terms with his disease. It not only changed his life but it also gave him a very clear-eyed view of what must change in the practice of medicine. His experience with illness — his realization of the real needs of a patient — encapsulates much of what we learned in the previous chapters. The vast technology available to modern Western medicine is life-saving and wonderful, but it is not enough.

when doctors get sick: Robert Jaffe’s story

My name is Robert Jaffe. I was a family physician working full-time until 1997 but my story begins way back when I was in medical school. I woke up one morning and saw that there was blood in my urine. I was sent to the hospital and was told to take off my clothes, and put on a gown, and lie on a table, just as everyone else does. I was having an intravenous polygram done, an IDP, where they inject dye into your vein and can then get X-rays of your kidney and how it functions. They took the X-rays and the technician, as usual, didn’t say anything to me, because they’re not allowed to say anything until the radiologist has looked at the film. I put on my clothes, and my short white doctor’s coat, and went to see the radiologist, who was just starting to put up the films. I told him I wanted to find out the results of the test. The radiologist, seeing me in my white coat, assumed that I was talking about one of my patients. He told me this was an interesting case and brought in the other medical students and residents and started giving a little lecture on polycystic kidney disease, and chronic renal failure, and how serious the disease was in this patient. I was in a state of shock. Up to this moment, I’d had no idea that there was anything at all wrong with me.



I told the radiologist that he was looking at my X-rays, and I didn’t want him making a teaching case out of me, I just wanted to talk to him. He apologized, and brought me back to his office. I sat and looked at him and said, “What does this all mean? What am I supposed to do?” His response was to hand me the X-ray films and to tell me to get rid of them, to bury them some place. He said he would remove all records of this visit. He then advised me to go out and buy some good life insurance and disability insurance because, once my diagnosis was known, nobody would ever insure me again. I felt that I had just been given a death sentence. Here I was in my last year of medical school, off to start a new career, the world was my oyster, and this diagnosis came on me like a thunderstorm. My reaction was to go into complete denial about being sick. I moved to the West Coast and started a family practice. I did well, until seven years ago when I noticed that my blood creatinine level was rising. That is a measure of how well your kidney is functioning. Once it starts to go up, you’ve already lost 70 percent of your kidney function. I continued to work, but by the beginning of 1997, I could see that I only had a few months left before I was going to be very sick. I had to face the fact that I was becoming a patient. One night I had a very vivid dream. I was walking inside a pyramid looking at the hieroglyphics on the wall. At the end of the hall, I got into an elevator; it started moving horizontally. Instead of going up, I was speeding quickly in a straight line. I was feeling very dizzy and when I woke up, my head was spinning and I was nauseous. I started throwing up and having hiccups that couldn’t stop. I knew that these were all symptoms of end-stage renal failure, my blood was becoming toxic and I would need dialysis right away. My body wasn’t working anymore. I had lost control. The illusion that you have everything under control is typical of a doctor but, as a patient, I discovered very early on that I didn’t have everything under control. I found myself with the catheter in my neck, hooked up to the dialysis machine cleaning out my body. This was not the way I had planned it. I never intended to be dependent on a machine in order to stay alive. My idea was that I was going to get a kidney transplant and go right back to work. That was my first lesson of being ill — learning how to live life with the understanding


that you have very little control over circumstances, over your own body, over what’s going to happen tomorrow. Robert Jaffe had a kidney transplant, but he suffered many complications that required a quick succession of debilitating surgeries.

Previous to this illness, I had never been inside a hospital as a patient, I had never had any surgery. The worst thing that had happened to me was when I was eight years old and was bitten by a dog and had to have stitches in a finger. I went from a physician who had never been a patient to someone who had had nine operations in six months. I still wasn’t doing very well and was facing a much longer period of recovery. I was much less sure of when, or if, I’d ever return to work again. It was as if I had entered into another world, and was never coming back. The surgeries and the complications lasted seven years. I was on this roller coaster, and I didn’t know where it was going to drop me off, or indeed if it would ever stop. It was a frightening and intense experience. I am much, much better now, but I have been through this transformative experience of being a patient, and then returning to my normal life.

the tribe of illness In our society, we all want to be in Disneyland or in some soft-drink commercial where we all look 20 years old and are playing beach volleyball. None of us wants to be sick, or to have a physical deformity. When you become ill, particularly when you become visibly ill, when you have a cane, or are in a wheelchair, people tend to shy away from you, perhaps because you remind them that this may be their future. Even though 75 percent of us will develop a chronic illness, and we all die, we try to avoid any reminders of those facts. I discovered that there was a small group of people who had faced illnesses themselves, often without ever telling me, and who, when I got sick, became much closer to me. I call this the illness connection. As I moved through my succession of treatments, I found that there are dialysis tribes, transplant tribes, and amputation tribes, people strongly bonded together by their similar experiences. They are a tremendous support to each other because they too have had this traumatic experience. They really do know what you are feeling.


an awakening

hospitals

If one of Carl Jung’s students would tell him that they had inherited a large sum of money, Jung would just shrug. But if another student came to him saying something terrible like, “I’ve just been diagnosed with cancer,” he would embrace them and tell them how much they are going to learn from the experience. This is a dark way of looking at things, but the truth is that these are the moments when you learn how to live.

I certainly learned a lot about hospitals from the patient’s point of view. Here I was stuck in a room for many days unable to move, staring at the ceiling, forced to eat the same awful food day after day. I don’t think that the staff has any idea what it’s like. Some people in intensive care units become psychotic after a while from this sensory deprivation, from just being in the same place all the time. Hospitals should have a director of ambience to change the lights and make the room look more like a bedroom or a living room. Get a more comfortable couch for the guests to sit on and vary the pictures on the walls. They could call in a hairstylist, get a manicurist, or have a masseuse see patients. None of those things are very expensive but they are just not on the radar of the nurses and the physicians. They tend to focus only on the patient’s vital signs and urine output, the chemistries and lab tests — the physical being.

Strangely enough, it really can be a blessing to have something horrible happen to you, because if you can cope and get through it, it strengthens your ability to make better use of the rest of your life. When you realize that you don’t really have control over your life, that all life is just a fleeting moment, then you have arrived at a place where you can live your life more fully. Illness gave me a much better appreciation of my marriage, my family, and my friendships. Before I got sick I tended to take people close to me for granted. I now appreciate that during the dialysis and after the surgeries, it was they who kept me alive. My illness fundamentally changed the way that I saw life. Like all of us, I used to carry on in that happy state of denial, refusing to accept the simple fact that I was mortal. I used to work eighty or a hundred hours a week. Illness turned my priorities upside down. Now I just want to be with my kids and my family, to garden, to watch the seasons go by. I spend more time just walking my dog, and looking at trees, and talking to people, reading books to my kids, stroking their heads, realizing that this too will not last very long. I also found that few things could upset me anymore. One night when I was at the Kidney Center on the dialysis machine, a truck driver came in and asked if anyone owned a blue Volvo. I raised my hand and he said, “Well, I don’t think you own one anymore.” He apologized, and told me that he had hit an ice patch, and had slid right into the first car parked by the side of the road. My poor car, which before this didn’t have a nick on it, now looked like an accordion. I shrugged my shoulders and caught a ride home.

There was little attention paid to how I was feeling emotionally. The nurses were better at it. Some would sit and just hold my hand and let me cry but they were the exception. This is not because they are bad people; hospitals are in the process of laying off nursing staff. The nurses have a higher and higher ratio of patients to care for and less time to be able just to sit and talk and listen. The physicians were worse. At first, each morning all the transplant physicians with my nephrologist and the team would come into my room. This army of white coats would smile and greet me, and tell me how good I looked, and how everything was working out well. But when things started to turn sour and it became clear that the transplant wasn’t taking, the interaction with the staff changed. They started holding meetings in the hall to discuss how I was doing, rather than having the discussions in the room. They were talking about the potential of the surgery failing, or other complications I was developing, and the risks of things that they might have to do, or the risks of things that might happen if they didn’t do something. I could hear these muffled voices on the other side of the door but their actual interaction with me was much shorter. I began to feel more and more abandoned because I wasn’t recovering. Doctors like to be successful and failure is not on their agenda. When things happen that can’t be fixed, when things go wrong, there is the fear, the sadness, and the defensiveness — all ending in less contact with the patient, with me.



relearning the art of medicine I have always seen myself as a good physician, someone who had empathy, care, and compassion for my patients. When they were going through difficult times, I thought that I did a good job listening and giving them support. It wasn’t until I had my own illness that I realized how big an impact illness has on someone’s life. We physicians come in with those long, white coats and stethoscopes and hammers, exuding confidence and professionalism. In truth, we are in this strange position. There are the occasional episodes, where you can take out an appendix, or you can control someone’s pain, or you can help them when they’re depressed, but, in reality, what we are able to do is fairly limited. I began to realize that a lot of what I do as a physician is to listen to what my patients have to say, to honor and encourage them to keep on with their lives and to do the best they can. So often you are in this big rush, and yet you are dealing with people who have the highest needs. I learned to be more human with patients. You see patients who are at death’s door, or people struggling with a big loss, and you are rushing off to see someone who has come in with a cold. Time is indeed a challenge, but the changes in modern medicine don’t have to be all bad. You can correspond by e-mail. You can have a medical assistant e-mail folks, or call them up just to check in and see how they’re doing. If you see someone who has a lot on their plate, you can make another appointment with them when you have time to talk about their problems. Physicians do not spend enough time listening to what the patients say, or really understanding why they have come to them.

All through my experience I kept thinking of something that happened many years ago while I was an intern training in a hospital. There was a patient with cancer on the ward who was having intractable back pain and the medications weren’t helping. Here was this man just groaning and groaning and groaning and the resident was totally frustrated because he just could not figure out how to control this man’s pain. An older physician was on call with him. It was the middle of the night and the resident had to wake him up. The doctor went into the patient’s room and stayed for an hour and a half. He then went to the nurses’ station and wrote and wrote pages in the patient’s chart. Then he went back to sleep. The resident, wondering what had happened, went into the patient’s room to find him sound asleep. He looked at the notes in the chart and was astounded to see, on page after page, the story of this man’s life. It told of his heroism during World War II and the work he had done in the union after the war. The doctor had just listened to this man, really listened. Here was someone in a lot of pain, about to die, crying out to be heard, to be recognized. The act of listening to this person, and honoring his life helped him to cope with whatever he was facing. It gave him strength, it gave him dignity, and it helped him to heal.

I have also learned a lot about how much courage it takes to be a patient. We are the astronauts being shot off on a voyage into outer space from which we might never return. I learned about facing my fears and I learned about hope. I have learned that there is something about faith and hope that can have a direct impact on the ability to heal, and to recover and move on with your life. I’ve always been optimistic, I don’t know why. It may just be some neurotransmitter aberration that I have, but the role of hope was very important in my recovery. And anyone who was able to give me a boost in hope — the patients who shared information about new experimental therapies or drugs, physicians who told me that there was something that they might be able to do, even if there was a slim chance that it would work out — were a great help to me. Because if you enter a state of despair your chance of recovery drops precipitously. 106 | the new medicine


chapter six

the future of medical care Everyone agrees that the financial structure of the health care system in this country is in a mess. Employer-based health insurance is unraveling, Medicaid is under severe pressure, and vast rising Medicare costs loom on the horizon.

We have this strange quilt of government and private systems that do not work well together. We are a downstream health care system in which we are busy trying to rescue people who are drowning in a river but we never look upstream to find out why they’re falling in, or why they can’t swim, or where the fence is broken. We spend far too much money taking care of people in the last days of their lives and far too little in preventing illnesses from happening.

In the next five years we are going to see substantial improvements in the health care system. One reason, ironically, is that, as it is now structured, medicine is on the verge of collapse. It is far too expensive, it is far too inefficient, and it is far too unsatisfying to individuals who need access to the system.

RALPH SNYDERMAN:

I can even see the bright side of the collapse of the insurance system with people paying for a greater portion of their health care with co-pays and so forth. Because real money is coming out of their pockets, the general public is becoming more aware that the system just is not working for them. They are saying in effect, “I’m not being treated like a human being. I don’t accept this in other aspects of my life so I refuse to accept this from the medical system.” The needs are so great and the desire for change is becoming so great that we will reach a crystallization point where people will say, “Let’s do something serious about it. It is about time we addressed the fundamental structure of the practice of medicine. Let’s make it better.”

ROBERT JAFFE:

All of this is going to get very dire very soon with those 80 million baby boomers pushing their way into Medicare. Our health care system isn’t prepared for that big bulge in our population, as it heads our way. Many changes will have to be made, but I’m optimistic. This generation isn’t going to go quietly into their older years, and into a nursing home to disappear. They will complain loudly if they don’t like what they’re getting.

future doctors Medical schools are changing now. They are starting to have classes in what’s called “medical narrative,” where students can learn not about a patient’s disease, but about the person and their story. They learn not to interrupt the patient after 18 seconds. There is also a push in medical schools to admit people with more than just a science background. They are admitting students with communication skills, who have compassion and empathy, all the qualities that will make for wonderful physicians. Medicine is not only about ordering tests. The challenge is to teach young physicians never to forget that they are dealing with human beings.

MIMI GUARNERI:

Drugs are not going to solve this problem, and physical appliances are not going to solve this problem — though they will help. What is going to be needed is a sense that medicine shares interests with complementary fields. Physicians have natural allies in social workers, in religionists, in physical therapists, in occupational therapists, in a variety of other fields around medicine that can share some of the responsibility for dealing with illness as well as disease. We are going to see a much more comprehensive medicine in the future, one that will figure out ways to empower the physician and the patient to deal with all of these many dimensions of care.

ARTHUR KLEINMAN:


chapter six: the future of medical care | 109

More and more students around the country are working both with actors role-playing patients and real patients early in their medical school training.

DENNIS NOVACK:

We are teaching more advanced skills, such as the ability to give bad news or to confront an alcoholic with his diagnosis, or the skills of working with an angry patient or family member. There are skills that you can define, teach, and then give feedback to the students on how they’re doing. All these skills enable the student to connect with their patients when they go into practice. Along with a mastery of biochemistry and anatomy, the human skills of medical students are starting to be given real value. One leading medical school, McGill University, has instituted an annual cash award to “a medical resident who demonstrates outstanding qualities of compassion, understanding, and acceptance of responsibility for ongoing care.” 24

What I hope for in the future of medicine is that every physician, at every stage of training and in every specialty, reconnect with why they became a physician in the first place, which was to make a difference, and to allow their humanity to enter into the encounter with the patient.

ELLEN BECK:

Students coming into medical school these days know they are not going to get rich by being doctors. Yes, they will have a comfortable lifestyle, but they’ll never be fabulously wealthy. So they choose medicine not just as a job but as a calling. They are far more idealistic and altruistic and I think that this is going to have positive effects for the future of patient care.

DENNIS NOVACK:

whole person medicine Medicine today is in a very unsettled period. The system is good at applying the wonderful advances in science but it is not conducive to addressing the emotional and spiritual dimension of illness. This, I think, is why so many people are defecting from “traditional” doctors like me and looking for “alternative” healers. I think that traditional medicine needs to reclaim its role to address not only the body but also the spirit. It can only do that if doctors begin to respect and to understand the importance of the spiritual dimension of the experience of illness. And it can do that if it teaches young physicians, and older doctors like me, that emotions are as central to a patient’s needs as any other dimension of their problem.

JEROME GROOPMAN:


We have put all of our hope and our money into technology and science and we have forgotten about the human aspect of medicine. The fact is that medicine is an art, not just a science. The science of medicine is about reducing things to what is common to all people who are sick. But every single situation is unique because we can never completely predict the individual’s capacity to heal. Science can do a tremendous amount, but it can never explain everything. It can never understand the mystery of the human body and the human soul and the way those two interact. For me, this is part of the joy of being a physician — to be in partnership with that mystery.

TRACY GAUDET:

My hope for the future of medicine is that we won’t create a separate discipline called Integrative Medicine because all of medicine will have been integrated seamlessly across the board. All doctors will realize that the power of the mind can be a huge ally. Instead of ignoring it, we can harness it to promote health. I think a lot of what gives doctors a sense of great accomplishment is the sense that they have entered a domain where they not only can help people but, in a world that has become increasingly commoditized and industrialized, they can be decent and kind.

ARTHUR KLEINMAN:

Physicians have this opportunity to engage with patients in an experience from which both doctor and patient have a sense of reaffirmed humanity. Understanding that life is important not just for the repairing of our broken bones and the fixing of our broken hearts, but because we deal with what is really serious, what is most at stake for us, what matters most in living. Two people have the rare privilege of coming together in the context of that interaction. I think this is a fantastic way of remaking our world, of making the world more human. The most common answer that the students give us after completing our course, the one thought that they will be taking home with them: “I can be a good doctor and still live from the heart.”

RACHEL REMEN:


biographies of the interviewees SHELLEY R. ADLER, Ph.D.

Associate Professor of Medical Anthropology, Department of Family and Community Medicine, University of California, San Francisco. Director of the Qualitative Methods Core, Osher Center for Integrative Medicine. Dr. Adler conducts research on ethnomedicine, integrative medicine, and the placebo/nocebo phenomena. She also studies patient-physician communication and quality of life at the end of life among underserved women with cancer. Dr. Adler is involved with the redesign of medical curricula to be more inclusive of relevant social scientific issues, such as cross-cultural medicine and communication. ELLEN BECK, M.D.

Co-founder and Director, UC San Diego Student-Run Free Clinic Project Clinical Professor, Department of Family and Preventive Medicine, University of California, San Diego School of Medicine. Since 1997, in partnership with community programs dedicated to social justice, the UCSD Student-Run Free Clinic Project unites healers, including volunteers, community members, and students from medicine, dentistry, mental health, pharmacy, social work, law, nursing, Oriental medicine, fine arts, education, and local communities to provide free, respectful, humanistic care to the underserved, those without access to care. This program won the 2002 Norman Cousins Award for a medical education program emphasizing relation-centered care. Dr. Beck also directs a national faculty development program addressing the health needs of the underserved and a year-long Fellowship in Underserved Medicine. A family physician, she is a mentor, advisor, and teacher to medical students, patients, and faculty and has taught Stress Management and Integrative approaches to medical students for many years. She is a mother of three teenage daughters. http://cybermed.ucsd.edu/freeclinic/index.html BRIAN BERMAN, M.D.

Founder and director of the University of Maryland Center for Integrative Medicine (CFIM). Professor of Family Medicine, he has trained extensively in acupuncture, homeopathy, and other CAM therapeutic approaches. Recently, he published a landmark study of the effectiveness of acupuncture for osteoarthritis of the knee, which found that acupuncture reduces pain and improves functionality. He is currently the principal investigator of two NIH funded centers studying traditional Chinese medicine, one of which is an international center with colleagues in Hong Kong. He was the first chair of the Consortium of Academic Health Centers for Integrative Medicine, and served on the


Institute of Medicine panel on complementary medicine. Winner of the 2005 Bravewell Leadership Award in Integrative Medicine, which “pays tribute to an outstanding person who is transforming health care through integrative medicine.” MARGARET CHESNEY, Ph.D.

Deputy Director, National Center for Complementary and Alternative Medicine (NCCAM), NIH. Prior to joining NCCAM, Dr. Chesney was professor of medicine and epidemiology at the School of Medicine, University of California, San Francisco (UCSF), where she was co-director of the Center for AIDS Prevention Studies and director of the behavioral medicine and epidemiology core of the UCSF Center for AIDS Research. Most recently, she was also a senior visiting scientist in the NIH Office of Women’s Health, in the Office of the Director. Throughout her career, Dr. Chesney has designed and conducted original research on the relationship between behavior and chronic illness, and on behavioral factors in clinical trials, including issues of recruitment, adherence, and retention. She also worked on the development and evaluation of psychosocial and behavioral interventions for health promotion, illness prevention, and treatment. MARY AMANDA DEW, Ph.D.

University of Pittsburgh, professor of psychiatry, psychology and epidemiology. She studies the emotional and behavioral aspects of illness particularly focusing on patient’s recovery from transplant surgery. She led a study that showed that serious mental health problems were prevalent after transplant, especially during the first year, and these problems served as predictors of additional medical complications in the later years after the transplant. JANICE KIECOLT-GLASER, Ph.D.

S. Robert Davis Chair of Medicine, Ohio State University College of Medicine; Professor of Psychiatry and Psychology, and Director of the Division of Health Psychology in the Department of Psychiatry. She is a leader in the area of psychoneuroimmunology; she has authored more than 175 articles, chapters, and books, most in collaboration with Dr. Ronald Glaser. Their studies have demonstrated important health consequences of stress, including slower wound healing and impaired vaccine responses in older adults; more recently they have also shown that chronic stress substantially accelerates age-related changes in IL-6, a cytokine that has been linked to some cancers, cardiovascular disease, type II diabetes, osteoporosis, arthritis, and frailty and function decline. In addition, their work has focused on the ways in which personal relationships influence immune and endocrine function, and health.

biographies of the interviewees | 113

RONALD GLASER, Ph.D.

Professor of Molecular Virology, Immunology and Medical Genetics at The Ohio State University College of Medicine, and Director of the Institute for Behavioral Medicine Research. He has published over 272 articles and chapters in the area of viral oncology and in the area of stress and immune function (most in collaboration with his wife, Janice Kiecolt-Glaser). He is past President (2003–2004) of the Psychoneuroimmunology Research Society (PNIRS). TRACY W. GAUDET, M.D.

Director of the Duke Center for Integrative Medicine (www.dcim.org), and assistant professor of obstetrics and gynecology at Duke University Medical Center. Under her leadership, the Center has pioneered the development of Personalized Healthcare Planning, as well as initiatives in research and medical student and resident education. She co-founded the Consortium of Academic Health Centers for Integrative Medicine and serves on the Steering, Executive, and Policy Committees, and chaired the Membership Committee from 2002–2004. Prior to coming to Duke, Dr. Gaudet was the founding Executive Director of the University of Arizona Program in Integrative Medicine, helping to design the country’s first comprehensive curriculum in this new field. She is the author of Consciously Female, a book on integrative medicine and women’s health, and is currently working on a follow-up entitled Consciously Pregnant. JEROME GROOPMAN, M.D.

Dr. Groopman holds the Dina and Raphael Recanati Chair of Medicine at the Harvard Medical School and is Chief of Experimental Medicine at the Beth Israel Deaconess Medical Center. His research has focused on the basic mechanisms of cancer and AIDS. He did seminal work on identifying growth factors which may restore the depressed immune systems of AIDS patients and on treatment for AIDS-related neoplasms, particularly Kaposi’s sarcoma and lymphoma. He performed the first clinical trials utilizing recombinant colony stimulating factors and erythropoietin to augment blood cell production in immunodeficient HIV-infected patients. He has been a major participant in the development of many AIDS-related therapies including AZT, ddI, ddC, d4T, 3TC and most recently the protease inhibitors. His basic laboratory research involves understanding how blood cells grow and communicate (“signal transduction”), and how viruses cause immune deficiency and cancer. He is a staff writer in medicine and biology for The New Yorker and the author of three popular books, The Measure of Our Days, Second Opinions, and The Anatomy of Hope.


ERMINIA GUARNERI, M.D., FACC

Medical Director and Founder of the Scripps Center for Integrative Medicine Board Certified in Internal Medicine, Cardiovascular Diseases, Nuclear Cardiology and Holistic Medicine. Dr. Guarneri completed her internship and residency in Internal Medicine at the New York Hospital and Sloan Kettering Memorial Hospital, Cornell University, where she served as assistant chief resident. She received training in general cardiology at New York University (NYU) and completed two additional years of training in Interventional Cardiology, one at NYU and the other at Scripps Clinic. Dr. Guarneri’s areas of interest include all aspects of cardiovascular disease prevention with an emphasis on advanced lipid management, lifestyle change and early detection using state of the art imaging modalities. She is a member of the American College of Cardiology, Alpha Omega Alpha, the American Medical Women’s Association and a Diplomat of American Holistic Medical Association. Author of the book: The Heart Speaks: A Cardiologist Reveals the Secret Language of Healing. ROBERT JAFFE, M.D.

Robert Jaffe is a board certified family physician living in Seattle. He has been a practicing clinician, on the clinical faculty at the University of Washington, Department of Family Medicine and a health activist in state and national tobacco control efforts. In 1997, he left his clinical practice due to chronic kidney disease. Since his successful transplant in 2004, he has been writing a book and lecturing about healing and patient perspectives on health care. He currently serves as a consumer representative on the board of directors of Washington State High-risk Insurance Pool, a nonprofit program offering health benefits to those rejected by private insurance for preexisting conditions. MAEVE KINKEAD

Maeve Kinkead received her B.A. and M.A. from Harvard University. She attended The London Academy of Music and Dramatic Art and has performed in theatre, film, and television. In 1992 she won an Emmy Award for her role as Vanessa Chamberlain on CBS TV’s Guiding Light. She is a published writer and is currently a student in the Warren Wilson College MFA Program for writers. ARTHUR KLEINMAN, M.D.

Esther and Sidney Rabb Professor and Chair, Department of Anthropology, Harvard University. Professor of Medical Anthropology in Social Medicine and Professor of Psychiatry, Harvard Medical School. He was elected to the Institute of Medicine of the National Academies in 1983 and to the American Academy of Arts and Sciences in 1993. Since 1968, Kleinman has conducted research in


Chinese society. He is the author of six books, including The Illness Narratives and What Really Matters: Living a Moral Life Amidst Uncertainty and Danger. From 1991 to 2000 he chaired Harvard’s Department of Social Medicine. He is presently the chair of the Department of Anthropology. He studies and writes about the social roots of disease, the doctor-patient relationship, culture and health care, and the moral basis of medical practice. DR. WILLIAM B. MALARKEY, M.D.

Associate Director, Center for Stress and Wound Healing, Professor of Internal Medicine, Medical Biochemistry, Molecular Virology, Immunology, Medical Genetics, and Psychiatry, Ohio State University. Dr. Malarkey works with Ron Glaser and Janice Kiecolt-Glaser, studying the effects of stress on wound healing. DENNIS NOVACK, M.D.

Associate Dean, Clinical Skills and Clinical Skills Assessment, Drexel University College of Medicine Dr. Novack is an expert in the subject of doctor-patient communication and is in charge of instructing the medical students at Drexel in these skills. RACHEL NAOMI REMEN, M.D.

Clinical Professor of Family and Community Medicine at UCSF School of Medicine and the Founder and Director of the Institute for the Study of Health and Illness at Commonweal. She is one of the pioneers of Holistic and Integrative Medicine and the Founder and Director of the Healer’s Art curriculum for medical students, which is now being taught in more than 1/3 of medical schools nationwide. She is co-founder and medical director of the Commonweal Cancer Help Program, one of the first support groups for cancer patients in America, featured in the groundbreaking 1993 Bill Moyer’s PBS series Healing and the Mind. Dr. Remen’s best-selling books Kitchen Table Wisdom: Stories that Heal and My Grandfather’s Blessings: Stories of Strength, Refuge and Belonging have been published in 18 languages. http://www.rachelremen.com DEBORAH SCHWAB R.N., M.S.

Blue Shield of California, Director of New Product Development. Founded in 1939, Blue Shield of California is one of the state’s leading health care companies. Headquartered in San Francisco, the not-for-profit corporation has about 2.3 million members, 4,000 employees and more than 20 office locations throughout California. For more information, visit the company’s Web site at www.mylifepath.com.


RALPH SNYDERMAN, M.D.

1989 to June 2004 he served as Chancellor for Health Affairs and Executive Dean of the School of Medicine at Duke University, where he was also President and Chief Executive Officer of the Duke University Health System (DUHS). He remains at Duke as Chancellor Emeritus and is continuing his work in prospective health care. He is an immunologist whose research contributed to the understanding of the precise mechanisms of how white blood cells respond to chemical signals to mediate host defense or tissue damage. Winner of the 2003 Bravewell Leadership Award. ESTHER STERNBERG, M.D.

Received her M.D. degree and trained in rheumatology at McGill University, Montreal, Canada, and was on the faculty at Washington University, St. Louis, MO, before joining the National Institutes of Health in 1986. Dr. Sternberg is internationally recognized for her discoveries in brain-immune interactions and the effects of the brain’s stress response on health: the science of the mind-body interaction. In addition to numerous scientific publications in leading scientific journals, she has authored the popular book The Balance Within: The Science Connecting Health and Emotions. Dr. Sternberg lectures nationally and internationally to both lay and scientific audiences, including appearances at the Smithsonian Institution (Washington, D.C.) and the Nobel Forum (Karolinska Institute, Stockholm). GARY WALCO, PH.D.

Director, The David Center for Children’s Pain and Palliative Care, Hackensack University Medical Center; Professor of Pediatrics, University of Medicine and Dentistry of New Jersey, New Jersey Medical School. Founder and Chair of the Special Interest Group on Pain in Infants, Children, and Adolescents of the American Pain Society; 2003 Jeffrey Lawson Award for Advocacy in Children’s Pain Relief, American Pain Society. LONNIE ZELTZER, M.D.

Professor, UCLA Departments of Pediatrics, Anesthesiology, and Psychiatry and Biobehavioral Sciences, at the David Geffen School of Medicine, UCLA; Director, UCLA Pediatric Pain Program at UCLA Mattel Children’s Hospital. An expert in cancer and also hospice/palliative care, Dr. Zeltzer runs the Pediatric Pain program at UCLA. She uses imagery, hypnosis, and other alternative therapies to treat chronic pain in children. She studies the development of chronic pain, mind-body-pain connections, and the impact of complementary therapies on chronic pain. She has completed studies of hypnotherapy, acupuncture, yoga, and meditation, and is part of a NIH-funded national research consortium studying the late effects of childhood cancer. biographies of the interviewees | 117

end notes 1. Ivan Illich, Limits to Medicine: Medical Nemesis: The Expropriation of Health (New York, 1999) 2. Reynolds Price, A Whole New Life (New York, 1994), 13–14. 3. Sigmund Freud, quoted in Arthur Koestler, The Ghost in the Machine (New York, 1967), 267. 4. Roy Porter, Blood and Guts: A Short History of Medicine (New York, 2002), 45. 5. Wall Street Journal, Oct. 10, 2005, d1. See also Dr. Robert S. Epstein et al. “Impact of Medication Adherence on Hospitalization Risk and Healthcare Cost,” Medical Care, June 2005. 6. Wilma Scholte op Reimer et al., “Smoking behavior in European patients with established coronary heart disease,” European Heart Journal 27:1 (2005): 35–41, originally published online at http://eurheartj.oxfordjournals.org/cgi/content/abstract/27/1/35 7. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Division of Kidney, Urologic, and Hematologic Diseases, U.S. Renal Data System Annual Data Report 2005 (2005). 8. Centers for Disease Control, National Center for Health Statistics, 2003. 9. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Division of Kidney, Urologic, and Hematologic Diseases, U.S. Renal Data System Annual Data Report 2001 (2001). 10. Arnold Relman, “A Trip to Stonesville,” The New Republic, December 14, 1998 (review essay examining books by Andrew Weil). Abridged version available online at http://www.councilscienceeditors.org/members/securedDocuments/v22n4p121-123.pdf 11. Herbert Benson et al.,”Brain Check” Newsweek, September 27, 2004. 12. See the website maintained by the National Center for Complementary and Alternative Medicine at the website of the National Institutes of Health: http://nccam.nih.gov/news/camstats.html. See also “When Trust in Doctors Erodes, Other Treatments Fill the Void,” The New York Times, Feb. 3, 2006, a20 13. Brian M. Berman et al., “Effectiveness of Acupuncture as Adjunctive Therapy in Osteoarthritis of the Knee: A Randomized, Controlled Trial,” Annals of Internal Medicine 141:12 (December 21, 2004), 901–910. See also http://www.annals.org/cgi/content/abstract/141/12/901 14. National Pain Survey, conducted for Ortho-McNeil Pharmaceutical (1999). See http://www.chiro.org/LINKS/FULL/1999_National_Pain_Survey.html 15. C. E. Dionne, “Low Back Pain,” in I. K. Crombie, P. R. Croft, S. J. Linton, et al., eds., Epidemiology of Pain (Seattle, WA: IASP Press, 1999). 16. National Institutes of Health, “The NIH Guide: New Directions in Pain Research I” (Washington, D.C.: Government Printing Office, 1998). See also the related announcement of grants: http://grants.nih.gov/grants/guide/pa-files/PA-98-102.html 17. “Chronic Pain in America: Roadblocks to Relief,” study conducted for The American Pain Society, The American Academy of Pain Medicine, and Janssen Pharmaceutical by Roper Search Worldwide, Inc., January 1999. See the webpage at the American Pain Society website: http://209.61.175.160/whatsnew/toc_road.htm 18. U.S. Renal Data System Annual Data Report 2001, cited in note 9. 19. Ian Urbina, “In the Treatment of Diabetes, Success Often Does Not Pay,” New York Times, January 11, 2006. 20. Carol E. Lee, “Physical Culture: Chronically Ill Patients Turn to Yoga for Relief,” New York Times, December 15, 2005. 21. Roger S. Ulrich, “View Through a Window May Influence Recovery from Surgery,” Science 224:4647 (April 27, 1984): 420–421. 22. For more information on Woodwinds see their website: http://www.woodwinds.org. 23. Price, A Whole New Life, cited in note 2. 24. Dr. Ezra Lozinski Prize in Clinical Medicine, McGill University, Faculty of Medicine




acknowledgements Middlemarch Films 132 West 21st Street New York, NY 10011

http://www.thenewmedicine.org Library of Congress Control Number: 2006921183 ISBN 0-9778299-0-1 Design: Amy Bernstein Copyright © Ronald H. Blumer 2006

Filmmaking is a collective effort and so in truth is book writing, particularly a book of this nature that relies so heavily on the thinking and footwork of others. The authors would like to thank Jennifer Raikes, a producer of the film and the editors and coproducers, Sharon Sachs and Donna Marino, who had the massive job of first organizing the many hours of interviews. Eric Treiber provided images from the videos as well as helping in innumerable other ways and Dianne Cleare supplied invaluable research for this book. My brothers, Dr. Herbert Blumer and Joseph Blumer, and Adam Symansky gave the book and film helpful first impressions. We also gratefully acknowledge the enormous contribution of Dr. Mack Lipkin, who generously gave of his time, energy, and especially of his wisdom. The directors of photography — Brett Wiley Don Lenzer, Bob Elfstrom, Maryse Alberti, Christine Burrill, John Kelleran, York Phelps, Greg Andracke, Boyd Estus, and Tom Hurwitz — it is their fine images which illustrate this book. To our ever supportive and intelligent executive producer Catherine Allen and Gerald Richman, to R.B. Bernstein who first read and proofed the manuscript and provided quiet support, and David Penick who copyedited the text, we owe our many thanks. We would especially like to thank the interviewees in the television series and the book who gave us their valuable time and special knowledge, and the patients we filmed and interviewed who allowed us to intrude into their lives. We owe a huge depth of gratitude to The Bravewell Collaborative, which supported the New Medicine project in so many ways and continues to support many of the medical projects mentioned in these pages and the television series. In particular, we acknowledge Penny George, Christy and John Mack, Ann Lovell, and William Sarnoff for their leadership in the production of this book. The television series and book would not have been possible without the extraordinary generosity of WebMD Health Foundation, The George Family Foundation and Bill and Penny George, The David & Lura Lovell Foundation, The Christy and John Mack Foundation and Christy and John Mack, The Simms and Mann Family Foundations, The Bernard Osher Foundation, Fannie E. Rippel Foundation, William Sarnoff, Ruth Stricker and Bruce B. Dayton, Wyeth, The Globe Foundation, Rudolf Steiner Foundation, Definity Health, Colburn and Alana Jones, Michele and David Mittelman Family Foundation, Complementary Care Foundation, The Fullerton Foundation, and The Arnold P. Gold Foundation. Finally, we would like to thank Diane Neimann whose faith in us made everything possible and, of course, Emma Sarah Blumer who makes everything worthwhile.

acknowledgements | i

foreword by Dana Reeve For more than a decade, the world of medicine has been a large part of my life, first because of my husband, Christopher Reeve’s spinal cord injury and now because of the challenges I myself face. I have been diagnosed with lung cancer and am undergoing treatment. Over the years, I have been very privileged to work with many wonderful doctors and caregivers, and we have had access to the most advanced hi-tech medical care available anywhere in the world. I owe a lot to modern Western medicine. But it has also become clear to me that hi-tech medicine, with all its wonders, often leaves out that allimportant human touch. For many, going to the doctor or to the hospital has become an assembly line of tests and procedures. And often lost in this examination of the hearts and the kidneys and the blood chemistry are the deeper needs of the person suffering from the illness. Illness, alas, is a great teacher, and one of the things I’ve learned is that the process of healing involves both the body and the mind. Your emotional state has a tremendous amount to do with sickness, health, and well-being. For years, my husband lived on, and because of, hope. Hope continues to give me the mental strength to carry on, but also, I am convinced, hope very directly influences my physical health. Doctors know this of course, but they are wary about how to apply it to the practice of medicine. For some, this kind of thinking represents the “New Agey” world of alternative medicine, and they view it with suspicion. Doctors speak the language of science and quite rightly demand proof that a treatment is effective. It has been hard to measure the effect of a feeling like hope on the human body. That is, until very recently.

foreword | iii

In this book you are going to read accounts from some hard-nosed scientists who are doing groundbreaking studies of the mind-body connection. Through clinical experience and with hi-tech brain-scanning equipment, they are proving, in the language of science, that our emotional state — our thoughts and feelings — have an enormous influence on physical phenomena as pain, healing and even our ability to fight off infection.

table of contents

You are also going to be privy to the insights of caregivers applying this new understanding to the practice of medicine — therapists who take advantage of all the best that Western medicine has to offer, but who also understand that technology alone is not enough.

foreword

iv | the new medicine

iii

introduction

3

one: to feel

7

two: to listen

28

three: to treat

50

four: why don’t they? (treat us like human beings)

80

five: to heal

90

six: the future of medical care

108

biographies of the interviewees

112

end notes

118

table of contents | 1

introduction I remember when I was in training, the first time that I cried when a baby died. I remember the look of contempt on my chief resident’s face. I learned crying was unprofessional and never cried about a patient again.

RACHEL NAOMI REMEN, M.D. (UNIVERSITY OF CALIFORNIA, SAN FRANCISCO SCHOOL OF MEDICINE):*

There’s something strange in thinking that you shouldn’t cry when a ninemonth-old baby dies. It’s perfectly appropriate to cry when a baby dies. In our training we learn to disavow and separate ourselves from certain aspects of our humanity. And, in our effort to become more professional, we become less effective as healers. How many of us have had this experience? Your appointment with the doctor is at 10 a.m. You sit in a tiny waiting room with your fellow sufferers coughing away. Forty-five minutes late, your doctor, looking at his or her watch, ushers you in for the interview. You try to tell the doctor all of your problems among the interruptions, the phone ringing, and feeling guilty taking up his or her time with of all those poor souls still in waiting room purgatory. You are sent out the door with a prescription or a directive for further tests, vaguely dissatisfied with the encounter.

To avoid delay, please have all your symptoms ready. (Notice posted in a doctor’s waiting room.)

Welcome to the modern world of medicine — an assembly line of tests, pills, and even replaceable parts — amazing technology addressing our every need except perhaps the most crucial: the need to be treated and understood not just as a diseased body part, but as a person. The statistics are shocking. An average doctor’s visit lasts just six minutes. And, while attempting to describe your primary symptoms, you are given on average 23 seconds to respond. Within this narrow window, it is difficult to say what the doctor is hearing or responding to. A well-trained doctor will focus on the symptoms (“When did this start?” “Is the pain in your stomach or your chest?”) but rarely will he or she go beyond to what might seem like mundane details such as “Are you having troubles at home?” or “What kind of chair do you

*For biographies of all the interview subjects, see page 112


introduction | 3

have in the office?” You will be quickly dispatched for the tests and the X-rays and perhaps an expensive scan and the doctor will move on to the next patient and the next set of symptoms. Tragically, many people report similar treatment even when they are diagnosed with a more serious illness. A friend who was being treated for cancer told me about a horrifying but all-too-familiar experience: the doctor casually looked up from the charts and began the visit by saying, “Do you want to die at home or in the hospital?” And if you have to go to the hospital, you are likely to be confronted with the full soul-destroying face of modern medicine. Some doctors and nurses may be understanding and caring, but the moment you are required to put on that hospital gown that doesn’t cover your backside, you are quickly made aware that you are part of a system whose effect is an assault on your humanity. Worse, as Ivan Illich pointed out years ago, because of the inexorable grinding of the wheels of large bureaucracies, a stay in the hospital often ends up making sick people sicker.1

The fabric of medicine has largely unraveled. Time is the most precious commodity for a physician and a patient. You need time to listen, you need time to think, you need time to communicate. You can’t figure out something complicated in an eight-minute visit. You hardly have time to go over blood tests and write a prescription. So it turns out that this factory-assembly-line kind of delivery of medical care, which is “efficient,” and “cost effective,” is antithetical to both the clinical as well as the emotional dimension of medicine. This is not what healing is.

they are stretched to the limit with impossibly large caseloads and considerable financial pressures. They are the ones who must fight a flurry of forms and regulations and complex, ever-changing medical technology every day. Something has to give and often what is put aside is the human, caring side of their medical practice. Insurance companies, government agencies, and managed care organizations that pay the bills are, in part, responsible for this. “A doctor’s time is very valuable,” they may argue. “Empathy costs. We can’t afford it. Besides, given the choice, what do you really want, your tumor shrunk or a pleasant chat with the doctor?“ In effect, all of us — doctors and patients are forced to approach the medical system with diminished expectations.

Our nation’s health care system has lost its way over the last two decades. It has become so enamored with technology and specialization that it has lost sight of individuals and their needs. We must to return to the patient’s comprehensive needs as the center of focus for our health care system.

RALPH SNYDERMAN, M.D. (CHANCELLOR EMERITUS, DUKE UNIVERSITY):

JEROME GROOPMAN, M.D. (HARVARD MEDICAL SCHOOL):

The novelist Reynolds Price tells of how two interns casually break the devastating news that he has spinal cancer as they walk by him in a hospital hallway. “Then they moved on, leaving me as empty as a wind sock, stared at by strangers. As a member of the last American generation reared by the old-time family doctor of endless accessibility and tact, I can expand on the faceless — sometimes near-criminal — nature of so much current medicine. For now, I’ll flag a single question: What would those two splendidly trained men have lost if they’d waited to play their trump card until I was back in a private room? It might have taken the doctors five minutes longer. I wondered how many other such devastating messages they bore that day to actual humans as thoroughly unready as I for the news?”2 What has happened to the practice of medicine? Most doctors are extremely hardworking, compassionate human beings, but often


In producing the TV series, The New Medicine, we have been privileged to talk with hundreds of concerned doctors, administrators, and thoughtful patients. They all have the same message: We must no longer tolerate dehumanized medical treatment. It is just not good medicine. While we all know that an incompetent doctor could harm us, these experts make evident that the impersonal medical care that we all have reluctantly come to accept is bad for our health. In fact, we may be in as great a risk from this inhuman, fragmented care as from medical malpractice. Everyone we talked to was clear about the fact that if you have a serious medical problem you are going to want a doctor with a high degree of technical skill. If you are having a heart attack, you certainly don’t want a doctor who only holds your hand and talks to you about your feelings. You want a doctor who will do everything possible to fix your heart. But you also need a doctor who follows through on all levels, because you are not simply a heart attack but a person with potential emotional, financial, or family concerns having that heart attack. And answering these other needs is as medically necessary as pills and surgery.

introduction | 5

Yes, you want your physician to be highly skilled, to be extremely knowledgeable, in medicine. But in addition to that, you want them to know you as a person. Ideally, you want them to know your illness but you also want them to know your preferences and your values. That’s just good medicine. We are not suggesting that we throw out the baby with the bath water when we emphasize the importance of the doctor-patient relationship. We are saying that human beings are more than just the sum of our physical parts. And all those other aspects of us really do influence our health.

BRIAN BERMAN, M.D. (UNIVERSITY OF MARYLAND SCHOOL OF MEDICINE):

The ideas in these pages are not radical or even new. It is no great discovery that stress can make you ill and lowering stress can help you heal. Everyone knows this. But this knowledge, which is common sense and now scientifically proven is taking many years to result in any real changes in medical practice. Doctors still spend only a few minutes with us, most hospitals are ill-designed, noisy, highly stressful places, and our hands do not get held when we face our lives’ greatest crisis — a serious illness. There is, however, progress. The experts we have talked to are not just brimming with theories but are working each day with patients and directing innovative programs in hospitals and clinics. They point the way to possible new directions for the future of medicine and give important clues to individuals trying to hold onto their humanity in an increasingly dehumanized medical system.

why this book One of the great frustrations in producing a television series is being forced by the demands of the medium to condense the ideas of these many brilliant experts into relatively brief sound bites. You gain drama and impact but, inevitably, some subtlety and nuance and whole sequences must remain on the cutting-room floor. It is therefore with great satisfaction that we are able, once again, to go to the source material and gather together some of the collective wisdom of the extraordinary people we talked to. They pose the problems but they also supply many of the answers, suggesting ways in which both doctors and you, the consumer of this system, can fix the broken culture of medicine.


chapter one

to feel In our culture, and not just our medical culture, we’ve been talked into seeing powerful parts of ourselves as soft. The parts that we see as soft are often the parts that cannot be measured, quantified, replicated or proved. The mysterious, the emotional, the profound, are seen as less valid than the numerical. Many people believe that only things that can be measured are real. I used to be intimidated by people who saw things in this way.

RACHEL REMEN:

My course reminds medical students across the country that medicine is not only a work of science; it is a work of service, and service is a special kind of love. We physicians now have all these shiny toys, scanners, MRIs, oscilloscopes, heart monitors — and so on. The problem is that we are so taken with these technologies that we forget about the emotions, we forget about the people side of things. But the people have never forgotten. They desperately crave that we understand the fact that emotions are important.

ESTHER M. STERNBERG, M.D. (RESEARCH PROFESSOR, AMERICAN UNIVERSITY):

“Yes, it would be pleasant to be treated with compassion by my doctor,” you may say, “But really I go to my doctor to be fixed. I don’t expect compassion from my car mechanic — I just want to be able to drive to work.” Similarly, if I come into my doctor’s office gasping for breath, I want my bronchial tubes repaired. And quickly! It would be nice to have a doctor who holds my hand and feels my pain but really I want what ails me to be fixed.

I have patients who tell me, “I just want a great surgeon, let him be technically competent. He doesn’t have to be nice, he can be a bully. I don’t care if he has an awful bedside manner.” I warn people to be very hesitant about choosing such a doctor. How is he going to treat you when you wake up from the anesthetic after surgery? You’ll have to be seeing him for the week that you are in the hospital. And how is he going to deal with you in the follow-up? And how are you going to deal with him?

ARTHUR KLEINMAN, M.D. (HARVARD UNIVERSITY):


I grew up in an era of scientific medicine and I am a scientist. I think CAT scans, MRIs and DNA sequencing, and the genome project are all wonderful and very important. The trouble is that emotions were seen as sort of soft and squishy, something that should be pushed to the side.

JEROME GROOPMAN:

There is no going back. We are going ahead into a world that’s going to be dominated by technology to a greater degree even than we have today. And I think every biotechnological development is crucial and potentially important. I have a deep concern, however, that at the same time that we are enabling doctors to become technologically effective we are disabling them from being humanly compassionate and responsive. I don’t think that it should be an either/or. There is no reason why we can’t be as humanly sophisticated as we are technologically sophisticated.

ARTHUR KLEINMAN:

Of course, it is not news to medical researchers that the mind affects the body. When people get embarrassed, they blush. A thought, a mental process, causes a physiological reaction, what doctors call cutaneous blood flow, which we can see as a reddening of the face. Someone sees a large bear coming at them in the woods and their blood pressure and heart rate go up. The skepticism that Esther Sternberg and others encountered came when she began to investigate the more fuzzy area of the relationship of our mental state to sickness and health. Doctors would never believe the painfully unmarried Adelaide in the Broadway musical, Guys and Dolls, when she laments that “just from waiting around for that plain little band of gold, a person could develop a cold.”

The news in medical research, along with all the amazing drugs and procedures, is that the mind is connected to the body. How you feel — your emotions, your state of mind — can dramatically influence health and sickness. Doctors must approach you as a complete human being, not as a defective heart or a malfunctioning kidney, not just to be nice but because it has been proven over and over again in respected scientific research studies that feeling better can make you better. But, given the prevailing culture of medicine, it will take a lot of convincing to put feelings back into the practice of medicine — to reconnect the mind to the body.

Can we really make ourselves sick because of our emotional state? For thousands of years, people believed that stress could make you sick, that believing could make you well, that your social world affects your health. These are things your grandmother told you. But, until very recently, the scientific and medical community did not believe these concepts. They could not see how something as ephemeral as a thought or an emotion, something that is out there in the ether, something that they could not see or measure, could affect something as concrete as health.

ESTHER STERNBERG:

Physicians really need to understand that the patient’s state of mind is an important factor in determining the outcome of therapy. A lot of physicians won’t buy this. They’ll say that either the person will or will not respond to this or that therapy, this chemotherapy, this monoclonal antibody, et cetera. And I would say, certainly the pure biology, the molecular interactions of the therapy and the diseased tissue is going to be very important. But there is another factor, and that is what is going on in that individual’s brain and their feelings of hope and empowerment. This influences the outcome in ways that we may not understand, but it is an influence. The data is there to support this.

RALPH SNYDERMAN:

When I was a young medical student I viewed the mind-body connection with great skepticism. And, as with most of my biologically based colleagues, I distanced myself as much as possible from notions that stress could make you sick. We didn’t even think about whether belief could make you well — that was so out of our thinking that we didn’t even discuss it. I was brought up in medical school to believe only the biological approaches to medicine and healing.

ESTHER STERNBERG:


Esther Sternberg studies the relationship of stress to that most basic of bodily functions, the immune system — the complex biochemical system in our bodies that fights off germs, viruses, and infection.

The concept that the brain and the immune system talk to each other, that it is a two-way street, that the immune system sends signals to the brain and the brain in turn regulates how the immune system functions, was so revolutionary even as little as 20 years ago that it really wasn’t believed by

ESTHER STERNBERG:


academic physicians and scientists. Those of us who were doing studies in this area were actually disparaged by our colleagues for being a little flaky. I was told, “You’re going to ruin your career by studying this.” It took the advances of cellular and molecular biology in the mid–20th century for us to understand how the immune system worked. Now, with brain imaging, with molecular biology, cell biology, and physiology, we can put all the pieces of the puzzle together, which we certainly could not do even a few decades ago. So the good news is that those very technologies that once obscured the thoughtful, caring side of medicine now can be used to understand how emotions and health are one. The nervous system and the body are intimately connected. The brain has connections throughout the body that are so intense that it is almost beyond description. You cannot get anywhere within the body and not have some nerve sprouts nearby. We know that these little sprouting nerve ends release locally active hormones which are able to affect immune cells and probably many other cells within the body.

RALPH SNYDERMAN:

The connections are there but how exactly does your mind affect your body? Rigorous science requires researchers to show cause and effect. They introduce something new to a system and it changes in a way that they can measure. This sort of scientific testing is used to determine what drugs work and what drugs don’t. The mold from which penicillin is derived was seen to kill bacteria first on a petri dish in a laboratory and then in the human body. Literally millions of people are alive today because of this wondrous discovery. Scientists quite correctly do not rely on folk wisdom but on observations and reproducible experiments. Where is the hard, scientifically measurable evidence that feelings and emotions have a profound influence on our health? An excellent place to start is by examining what is known to medical researchers as the placebo effect.


the placebo — the power of expectations To determine if a new drug is really effective, medical researchers select two matched groups. They give the real drug to one group and, to the second group, they give a sugar pill that looks exactly the same. To eliminate any possibility of the contamination of their results, neither the subjects, nor the staff administering the pills, know which pills are the active ones. This is known as a double-blind study. Experimenters are well aware that either the positive or negative attitude of the pill givers can influence the results of the test. Thus, at the very core of the methodology of this most rigid of scientific experiments is a tacit admission that something else is operating here – that the mind can influence the ESTHER STERNBERG: The Rx symcure. Obviously, the pill and the attitude of bol that starts a prescription was the giver of the pill are a package. As we an ancient symbol that the shall see, there are other experiments which Romans borrowed from the support this fact. Researchers are deterEgyptians. The Romans thought mined to isolate all variables to find out if that this hieroglyph was a the drug is really working as opposed to an prayer to a god. So even today illusion that it is working. But even here, in every prescription starts with a prayer to Jupiter. the logic of supposedly hard-nosed science, there is a final twist. When the results of this double-blind study are published, they may look something like this: Thirty-three percent of the people given the real pill show improvement while only 22 percent of the group given the sugar pill shows any improvement. Thus, the thinking goes, by eliminating the placebo effect — the belief by the subject that he or she was getting beneficial treatment — we have proven experimentally that the active ingredients in the drug are powerful and effective. But notice that these experiments also demonstrate that feelings are therapeutically significant to that 22 percent who are getting the sugar pill and show improvement. The placebo effect is shown to be even stronger if the experimenter actively tries to convince the subject by word and deed that she or he is getting the real treatment — for example, if the inert substance is administered as an injection. Transfer the placebo effect to a real life visit to the doctor. “We can’t really do anything about your pain,” she may say, “But take this pill, it may make you feel a little better.” And now imagine a different scenario where your doctor says instead, “This is a wonder drug that will have a powerful effect.” Again there is research to show


that your pain will actually be reduced when the power of the drug is combined with the placebo power of your doctor’s words.

stress, sickness and health Understanding the relationship between the brain and the function of other systems is a rapidly emerging field. All the evidence points to the fact that there is an important influence of the mind over the body in its ability to affect the immune system.

RALPH SNYDERMAN:

The National Center for Complementary and Alternative Medicine is funding about a dozen studies on the placebo effect, to try to understand the mechanism by which a patient’s beliefs and expectations can influence their physiology.

MARGARET CHESNEY, Ph.D. (THE NATIONAL INSTITUTES OF HEALTH – NIH):

If you have a belief that the treatment you are getting is going to take pain away, that belief has been shown in experiments to be capable of releasing the chemicals in your brain that actually reduce how much pain you’re feeling. These people believe they are receiving a powerful pain medication, but in fact they’re just getting an inert injection. But that belief is enough to markedly reduce how much pain they feel.

JEROME GROOPMAN:

It is not imaginary; a placebo is a very powerful, potent medicine. It works through brain pathways and nerve chemicals. So just walking into the room to see the doctor has an impact on health. This is a very important fact that we, as physicians, must remember: Simply the interaction between doctor and patient is a very important part of the healing process.

ESTHER STERNBERG:

The opposite of the placebo phenomenon is something that’s called the “nocebo.” It makes sense that if the mind has the power, through thoughts, to affect the body positively, then negative thoughts could have negative outcomes. If you don’t expect to do well, perhaps you will not do as well. A classic example is that of very sick patients who, when they are told that they don’t have very much time to live, soon get much sicker. There is something more going on and we are only just now beginning to understand that the mind-body connection can be both positive and negative.

SHELLEY ADLER, Ph.D. (UNIVERSITY OF CALIFORNIA, SAN FRANCISCO):

We know that the physicians’ words are important. They have tremendous power to heal or to harm.

DENNIS NOVACK, M.D. (DREXEL UNIVERSITY COLLEGE OF MEDICINE):

We can see that thoughts and beliefs, under certain circumstances, can make you sick and beliefs can make you well. But how does this work? Medical researchers are beginning to uncover the secrets of the precise biological mechanisms by which emotions can have a direct effect on our health.


An unhappy marriage is bad for your health. Reuters news report, December 2, 2005.

Health is really a balance. Most people think about health as simply the absence of disease, but it is a lot more than that. We are walking through a very dirty soup every day of our lives. Every day the body has to deal with all sorts of insults in the form of bacteria and viruses. That’s normal. The whole body — the brain and the immune system — is set up to respond to these insults and then get back to normal, get back to some balance. Our health lies not only in the body’s response to these insults, to disease, but in setting itself back to a state of balance.

ESTHER STERNBERG:

In each of our bodies, there is a whole universe of many specialized cells and nerve chemicals that all work together. When they work together at the right time, and in the right way, that is what constitutes health. If there is a mismatch, that is when you have disease, and one of the important factors that affects the balance of this system is stress. Hans Selye was a professor at the University of Montreal at the same time that my father taught there. Selye believed that if an individual is exposed to too much stimulation, too much stress, he or she can become ill. He understood that there was a stress response that included the brain and endocrine organs, and that even affected the immune system — the system in our body that fights disease. Not enough was understood at that time about how the immune system worked, or about the hormones that were released under those circumstances, to really understand how stress could make you sick. So Hans Selye’s ideas were very controversial during his lifetime. It took decades to develop the scientific tools to understand each part of that system; the mechanism by which stress influences how the immune system works. Even then, hard-core scientists continued to be skeptical.


that requires about 10 slides per subject. We were studying 78 students before their exams, during their final exams when they were under high stress and after their exams as a baseline. That is 2,340 slides, and I read every one of these slides myself — it literally took days to read all these slides. The data came back showing evidence that indeed the latent virus was reactivated when the students were under high stress, but I absolutely refused to accept the results. I went back and I reread every one of those 2,340 slides. That’s how much I did not believe that stress could reactivate viruses. But it was true.

The husband and wife team of Ronald and Jan Kiecolt Glaser are scientists doing basic research on the effects of stress on the immune system. When they began their work, nobody could have been more skeptical than research scientist Ronald Glaser. His field of expertise is the study of viruses.

The link between the brain and the immune system is complex. When you are stressed, the brain releases a hormone that circulates through the bloodstream releasing other hormones including adrenaline, which gives you a boost of energy, and cortisol, a powerful anti-inflammatory. Cortisol has the effect of tuning down the immune system. In a crisis, all of your body’s energies must be focused on the task at hand and therefore the energy required to fight off germs is temporarily suppressed.

Until 1978, I never even knew a psychologist, and then I found myself dating one. I confess, as a basic scientist, I didn’t have a positive impression of what psychology was about. When Jan started talking about this new field called psychoneuroimmunology — based on the idea that your mental state could affect something as fundamental as your immune system — quite frankly, I didn’t think much of the idea. On the other hand, we were married by then and I felt I had to worry about the marital interactions so I agreed to do one study. I assumed it wouldn’t work out but at least I could satisfy her that we tried.

RONALD GLASER Ph.D. (OHIO STATE UNIVERSITY COLLEGE OF MEDICINE):

In our early studies, we used medical students as subjects. I suspected that during exam time, when they were under very high stress, their immune system would function more poorly than at lower stress times and therefore they would be more susceptible to illness. I never guessed that we would find the influences were far, far stronger than anything that I ever thought was there.

JANICE KIECOLT-GLASER, Ph.D. (OHIO STATE UNIVERSITY COLLEGE OF MEDICINE):

I’ll give you an example of how unwilling I was to believe these things. We were investigating the possibility that stress could reactivate latent herpes viruses like the cold-sore virus or the Epstein-Barr virus. Now, to do

RONALD GLASER:


These hormones produced when we are stressed are there to protect us. If the house is burning or if we are being chased by a bear, we need to produce sugar so we can run away. Our vessels need to constrict, so that we don’t bleed to death in an emergency situation.

MIMI GUARNERI, M.D. (MEDICAL DIRECTOR, SCRIPPS CENTER FOR INTEGRATIVE MEDICINE):


The problem is not the stress response, which is normal and necessary for your very survival. In fact, many people function very well in highstress situations, paradoxically finding them relaxing. Stress is only bad for you when it overwhelms your ability to handle it. The constant flow of stress hormones has the effect of keeping your immune system tuned down, and in the long term this makes you more vulnerable to disease and infection. We know anecdotally that after long periods of stress, we frequently get sick. Researchers like the Glasers have been able to measure this effect by showing that highly stressed people produce fewer antibodies to a vaccine in their blood stream because their weakened immune system cannot react to the invading organism.

We know now from the studies on vaccine responses in our lab and from studies in other labs as well that stress is really a player in a variety of things, and the effects of prolonged stress are far more profound, and far more important across a whole host of diseases, than we ever thought.


We have learned that the mind, the central nervous system, plays a role in the disease process. As we continue to research the interactions between various systems in the body and mind, employing new technology to understand how they work together, this may open up new modalities for treating some very severe diseases that we have not been able to deal with so far, even cancer.

RONALD GLASER:

Doctor Mimi Guarneri, a cardiologist, believes that learning to control one’s reaction to stress can be a major factor in controlling heart disease, potentially as powerful as more hi-tech interventions.

When I am in a situation which I perceive as stressful, I’m going to produce cortisol, which will raise my blood sugar. I’m going to produce aldosterone, which will raise my blood pressure. I’m going to produce adrenaline, and noradrenaline, which will raise my cholesterol, constrict my arteries, increase my heart rate, and I have no inclination to keep cause me to have skipped heartbeats. If you are the domain of the psychological floating as it were in the air, angry, screaming, and yelling all the time, that is without any organic foundaas big risk factor for heart disease as having a tion. Let the biologists go as far high cholesterol level. as they go and let us go as far

MIMI GUARNERI:

as we can. Some day the two will meet.3 Sigmund Freud


There is another reason why stress matters. When people are under heavy stress, they do all the things that are bad for their health. They drink too much, eat too much, smoke too much, and don’t exercise. So stress hurts their immune response directly but it also has an important influence on how they treat themselves — their health behaviors.


I’ve had asthma for a good part of my adult life. Asthma is an interesting example of how a chronic illness oscillates between periods when the disease is really difficult and disabling and periods when it is quiet and bearable. When you are having an asthma attack, you really get frightened. You are running out of oxygen and it feels like you are in the water and drowning.

ARTHUR KLEINMAN:

Many things can bring on an attack, but one important factor is certainly stress. We see people with repeated asthmatic crises because they have a dysfunctional marriage, a lousy work situation, or problems in school. Exposing someone to any kind of constant stress can make the asthma go from a controllable level to an uncontrollable level. And it sets off a downward spiral. You may be anxious about what is happening in your married life, which makes the disease worse, and then you become even more anxious because of the illness. Therefore, controlling the anxiety is also a way of controlling the illness. You can actually talk people out of an asthmatic attack by reducing their anxiety. I’ve done it myself in emergency rooms. Doctors ought to be armed with methods to reduce stress, just as they’re armed with the right bronchodilators to use. It turns out that the Broadway musical had it right. Because of the constant stress of enforced singlehood, Adelaide really could develop a cold. The implications for the practice of medicine are profound.

As physicians, let us admit that emotions are a very important part of health care. Somebody who is anxious and scared, with their stress response pumping out all these hormones and nerve chemicals to the max, we now know is going to respond differently to anesthesia, is going to respond differently to the drugs you give him or her. Disturbances of emotions can change your physical health and physical disease can change your emotional health. We need to incorporate this knowledge into the way we take care of patients.

ESTHER STERNBERG:

We can now say with confidence to some people under high stress, “you must get help; you must get a social support structure that allows you to not be alone in carrying the whole burden.” And we are saying this for valid medical reasons. In Europe they actually prescribe vacations for people with burnout and send people to a spa. We should do that here.


There is a tendency to think that real medicine is really in the technology and that this other stuff is just touchyfeely. We just do it to appease people just to make them feel that we care. That is where we’re very wrong. As we understand the science behind a lot of these mind-body approaches, then we will really begin to understand that they are every bit as powerful as, if not in some cases more powerful than, the technology that we’ve come to rely on. They have very real, measurable physiologic effects that can work with the pills and the procedures.

TRACY GAUDET, M.D. (DUKE UNIVERSITY MEDICAL CENTER):

whole-person medicine The cure of many diseases is unknown to physicians because they are ignorant of the whole which must be studied. For the part can never be well unless the whole is well. The great error of our day is that physicians separate the soul from the body. Plato (427-347 B.C.) Greek Philosopher

The old mind-body separation just doesn’t work. We know that the mind and body are integrally related — what happens in your thoughts will affect your body, what happens in your body will affect your thoughts.

LONNIE ZELTZER, M.D. (UNIVERSITY OF CALIFORNIA, SCHOOL OF MEDICINE):

Let us say you suffer from migraine headaches. You might have some vascular component and you might have some secondary muscle spasm. You are hurting so you are anxious about it, your arousal system is up, and you are distressed. So, what percent of your headaches are psychological, and what percent are biological?

As your doctor, I might feel that some medication will be useful, but massage will also be useful, for the myofascial and muscle spasm part, and cognitive behavioral therapy, or meditation or yoga will help as well. Now we encounter the real world of your health insurance. Which pieces will your mental health coverage pay for? Which part will your medical insurance pay for? And which part of the therapy will neither pay for? How can we calculate what percentage of your headache is physical and what percentage is mental? As you can see, this old model of medical care really doesn’t work anymore.



The question whether physicians or the health care system should be paying attention to a person’s mental well-being gets back to the question of what the health care system is all about. I know there are those who think that all we should be doing is working on some broken body part, like a mechanic. It is insane.

TRACY GAUDET:

If a physician’s work is really about optimizing someone’s health, then how can we not pay attention to the state of their emotional well-being and their relationships and their spirituality? How can we separate their body from the rest of who they are? For me, it is impossible even to imagine treating a patient without embracing the whole being. The problem in medicine today is that we give the spirit to the ministers and rabbis and priests, we give the emotions to the psychiatrist and the heart to the cardiologist. We can’t chop people up, compartmentalize them into these little pieces because it doesn’t work.

MIMI GUARNERI:

If you are a 70-year-old who has a heart attack and you have no friends, the likelihood that you’ll die within six months is about 70 percent. If you have one friend, it falls to about 50 percent. And if you have two or more friends, it falls down to about 25 to 30 percent. So emotional support makes a huge difference in the progress of an illness.

Mary Amanda Dew is an expert on the emotional aspects of illness with a particular focus on recovery from transplant surgery.

WILLIAM MALARKEY, M.D. (OHIO STATE UNIVERSITY):

We ignore these things simply because we don’t have blood tests that shows them or a CT scan that recognizes them. That somehow makes them unimportant.

ROBERT JAFFE M.D. (HEALTH ACTIVIST, SEATTLE):

Human beings are at once biological, psychological, and social beings. That’s how we’ve evolved, that’s who we are. And if there’s a disturbance in any one of those aspects of being, it affects every aspect of being. Social isolation is as big a risk factor in illness as high blood pressure. If there are very upsetting things happening in our social environment, it affects our biology. Stress hormones start getting released which can change our anatomy. Neurons in our brain are changing in response to what is happening in the environment. If we are depressed and feeling hopeless that may well influence whether we are going to get better or not.

DENNIS NOVACK:

People often think that psychological adaptation for transplant patients is a nice little extra but not really as important as the operation and biology. This is not true. We have followed about 250 people to date from the point of their transplant onward. And, taking into account every medical and surgical variable, we have found that their psychological status in the first year after the transplant was a predictor for the onset of medical complications. People who do not make a good emotional adjustment are at a higher risk of dying sooner.

MARY AMANDA DEW, Ph.D. (UNIVERSITY OF PITTSBURGH):

There are many different ways in which your emotions can affect your health. If you are depressed, for example, you will not take care of yourself, you will not keep up with your medical regimen. That, in turn, increases the risk for the different kinds of complications and ultimately a risk of death. Even though we have found strong evidence about the critical importance of emotional well-being, we also see that many transplant teams do not pay very great attention to people’s mental health. In transplant medicine, as for most other areas of medicine that deal with physical illness, we need much greater recognition of the role of mental health and emotional factors. People aren’t just a bunch of different body parts. Your brain — how you feel emotionally — is connected with the rest of you. You cannot just ignore that piece of you and think that the rest of you is automatically going to be okay, because you will not be okay.



mind-body and chronic illness Medical care is in crisis today in part because it is a victim of its own success. The miracle drugs and the ability to perform complex surgical repairs keep us living longer, and many acute illnesses have been conquered because of vaccines, antibiotics, and antiviral drugs. Even major killers such as cancer, AIDS, and heart ARTHUR KLEINMAN: I see dealing disease, for which there is no cure, have, with chronic illness as a learning in many cases, been reduced to chronic opportunity for all of us. By the ailments that people can live with for many, time we get to be over 70 years many years. There are, by one estimate, of age, most of us will have at more than one hundred million people in least one chronic illness — two this country living with one or more chronic or three if we live longer. We’re condition, diseases such as arthritis or all going to have this experience, heart disease. The result is that most visits so we’d better get ready for it. to the doctor or to the hospital and most of the billions spent on health care are dealing with illnesses for which, by definition, there is no cure, no quick fix. Looking at the body alone may on occasion be a good way of dealing with an immediate crisis. We all thank heaven for that wonderful emergency room staff. But a practice of medicine that separates the mind from the body and relies only on pills and procedures is abysmal at dealing with prolonged, life-sapping illnesses for which there are no quick or easy remedies.

A chronic disease like arthritis destroys the tissue around the joints, causing pain and decreased mobility. Sufferers of arthritis are very frustrated because they can’t do all the things that they used to be able to do. They can’t go up and down the stairs, play with their children, or play a sport as they used to do. It is now the frustration, in addition to the pain, that is causing enormous anguish. Often people suffering from arthritis are not getting relief from traditional medicine.

BRIAN BERMAN:

Modern medicine is based on what I would call mathematical medicine: one, you diagnose the symptom — two, you treat the symptom — three, you cure. Pure mathematics — boom, boom, boom. That is rarely the case anymore.

RONALD GLASER:


Many people went into the field of medicine in my generation with the mystique that for every disease there is an underlying cause, and we need to find it and fix it and to effect a cure. That is seen as victory — everything else is defeat. This is a delusion. What we try to teach at Duke University Medical School is that as a physician, we will sometimes cure. Hopefully we’ll cure a lot. But whether or not we can cure, we must always care, and part of caring is teaching the individual to cope with their illness, to adapt to it in the best way possible. Certain symptoms may continue to be there, but it doesn’t mean that the patient’s life is destroyed.

RALPH SNYDERMAN:

A number of years ago, I had a profound revelation. If we took all the discoveries I was aware of in the United States (and I try to keep up with most of them), and allowed them to fulfill their promise, what impact would they have in the practice of medicine during my lifetime, during my son’s lifetime, and if he has children, during my grandchildren’s lifetime? I realized that through the scientific approach alone it is unlikely that we would be able to solve more than 30 percent of the problems that people come to the health care system for. I realized that, while science and technology are absolutely needed at the core of the progress of medicine, they are not in and of themselves sufficient to address our health needs. We need to be thinking of what people need here and now. When a patient with rheumatoid arthritis comes to a physician, the response is not going to be simply “here, you take this pill and it’s going to go away.” This is a condition that we as physicians may be able to treat partially by therapeutics, but an awful lot of the treatment will come about by understanding the individual and, what is more important, by having the individual understand their illness and how to live with it within what the best therapies can provide.


listening to illness

Rachel Remen’s story

A life-threatening, disabling illness concentrates the mind like almost nothing else and makes clear to us what really does matter in our lives. The story of our lives comes out with the story of illness. The doctor must listen to the story of illness, first solicit it, hear it, permit it to be said and then to understand it, to appreciate it, to analyze it even, and to make sense of it. Listening to the voice of the patient is crucial. Everything that I’ve read and seen makes me believe that taking the story of illness into account improves the care we give.

ARTHUR KLEINMAN:

Anyone who suffers from illness or anyone who has been witness to a family member suffering from illness cannot deny the fact that a serious disease is transformative. The health care system as it’s set up right now is not acknowledging or supporting that transformation. That is the pivotal piece of what’s missing in health care today. The way medicine is practiced, we take a patient with a diagnosis, we give them a treatment, and then we say okay, you’re finished. You’re done. But they are not done. It is not over. You are just starting to figure out what is your life now that you have survived this cancer. You are different. Every aspect of your being feels different — your relationships, who you are, how you relate to your body — everything has shifted.

TRACY GAUDET:

There has not been any awareness of this, any embracing of it in medicine as practiced today. We need to help the patient learn how to work with this transformation and come out the other side to a new level of health. Much of this chapter has dealt with the relations of our emotional state to our health and how the medical system can harness this understanding to the process of healing. It is fitting to put this information into perspective in a personal story. One of the most charismatic people we met during the filming of our television series was Rachel Naomi Remen, who is a doctor, a teacher, and the sufferer of a terrible lifelong illness. Along with the scientific proof that one’s emotional state affects one’s health, her story expresses, in personal terms, the extraordinary power of what has erroneously been called the softer side of medicine.

I think it is important to honor the great gift of science. Science has enabled us to do things that were only the dreams of the doctors of generations ago. Without the science I would not be alive today. But without the art of medicine, I’d probably be an invalid. When I was about 15, I became ill with Crohn’s Disease, a disease of the intestine and the joints. This disease has been my life companion for the past 52 years. When I was first diagnosed, a group of people in white coats gathered around me and told me the facts. There was no known cure for Crohn’s disease. No one knew what caused Crohn’s disease. I was told that I could expect to have multiple surgeries on my intestine over my lifetime and that I would probably be dead by the time I was forty. It was a time of great despair for me and for my family and I made a lot of life decisions on this basis, decisions about marriage, decisions about having kids. I didn’t want to start something that I knew I would not be able to finish. I have had seven or eight major surgeries. I no longer have much intestine, but I haven’t been dead for the past 28 years. If only one of the physicians around me had said to me, “You know, there might be something in you that can grow past the obstacle of this disease; even though we cannot cure this disease, you



might be able to find a way to live a good life; even though it isn’t going to be an easy life. There might be something that could be called the will to live in you, and you might be able to find it and strengthen it and find others who can help you to strengthen it.” That would have made a huge difference to me. But nobody mentioned it, perhaps because “Will to Live” isn’t found under “W” in Harrison’s Textbook of Internal Medicine. You discover something like this only by observing life itself. Healing is about the will to live, it’s about collaborating with something deep in others that they may not even be aware is there, strengthening it, calling it forth and helping them to nurture it. When I was 27 years old, I had the first of my eight surgeries. A large part of my intestine was removed, and an ileostomy was created for me, which means that I wear an appliance that collects my stomach juices and is emptied a few times daily. It is a common surgery now, but forty years ago it was not a common surgery. And I survived it. There was only one problem: I was a 27-year-old single woman and I couldn’t live with it. I felt completely separated from anything feminine or elegant, from all other young women my age. I became so profoundly depressed that I was suicidal, and I started saving the sleeping pills and the pain pills that were given to me every day, and thinking that I would wait until I was discharged from the hospital to go home and take them all. In the week I was in the hospital after my surgery, a group of experts called enterostomal therapists came daily to change my appliance for me and help me. These were all young women, the same age as I was. They would come into the room in their white coats and put on a mask, a gown, an apron, and gloves. Then they would remove my appliance, replace it with a fresh one, take off their mask, their gown, their apron, their gloves and go to the sink in my room and very carefully wash their hands. This was not giving me a good feeling about the radical change in my body. It humiliated me and made me feel deeply ashamed.

elegance of my nightgown. As she continued to chat with me in this very easy way, she took an appliance from my bedside table, removed my old one, and replaced it using her bare hands. I was a young doctor at the time and my first thought was how unprofessional! But she kept talking to me and her hands were warm and very gentle. She was so close to me that I could smell her perfume, and she was wearing pink nail polish, something no professional woman wore in those days. Suddenly I felt something come up in me, a kind of unsuspected strength or power and I simply knew that I could find a way to do this. It was not going to be easy but I could make this all right; even something like this was going to be all right. Now, this woman did not give me back my intestine; medical science can’t do this even today. What she gave me back was my life, not because she knew how to cure me, but because of her willingness to touch me. We don’t recognize our power as human beings to affect another person. We think only our expertise matters. Our whole culture is like this, not just the medical culture. It is a technological, expert-oriented culture and we have given away a great deal of our power to make a difference in the lives of other people because we have narrowed our thinking about ourselves in this way. In my fifth surgery, I was being treated by the head of the department of GI at one of our San Francisco hospitals. I developed a large abscess in my abdomen and this would mean that I would have to have extensive surgery yet again. When this surgeon delivered the news to me, I broke down and I cried. But then I looked up and saw that he too had tears in his eyes, and I realized that I was not alone with this surgery. Together, he and I, we were going to be able to do this.

Toward the end of the week a woman I’d never seen before came in to do this for me. She too was my age and she was dressed as if she was about to go out on a date. Very pleasantly she asked me if she could help me, and when I said yes, she went to the sink in my room and carefully washed her hands before she touched me. She was not wearing a white coat; she did not put on a mask or a gown. In a very natural woman-to-woman way, she commented on the



chapter two

to listen it’s tough being a witch I had a patient who had a lot of different symptoms that kept getting worse. Finally, after about the fourth visit, I said to him, “I don’t know what’s happening here. I haven’t been able to find anything physically wrong with you but I have the feeling that you’re not telling me something.” He then came right out with it. “I’ve been hexed,” he explained, “My ex-wife hexed me and that’s why I’m so sick.” This was his firmly held belief and so I had to deal with that.

DENNIS NOVACK:

I told him that he had come to just the right person because I had worked with witches in the past. And this was true. I was fortunate enough to spend a year going around the world practicing medicine. In Taiwan I had a patient who was a witch. She thought that she could kill people through her magical powers. Apart from that she was a very nice woman. She came to me suffering from stress and high blood pressure. It’s tough being a witch. Since I had this background, I could understand where this man was coming from. And once he knew that I understood what was going on, and that I respected his belief, he was able to start making some changes and engage with me in overcoming the hex. What’s wrong with you? Doctors now have enormously sophisticated and expensive tools and tests to answer this question. Probes with lights and a tiny camera can explore the maze of your intestines; a huge machine called an fMRI can look into the very functioning of your brain. But often to uncover the real answer to what is wrong, the lowest of low-tech methods may deliver the best results — simply talking with you.

Talking to patients is how doctors spend most of their time. Doctors perform about 150,000 medical interviews during their career. The number is so huge because the interviews are so short. An average doctor’s visit these days only lasts six minutes. During this brief time patients may be reluctant to tell doctors what is really troubling them. Obviously they feel rushed, but they may also be scared, superstitious, or embarrassed. And yet these interviews are absolutely critical for getting a correct diagnosis. This diagnosis involves getting to know a person’s total life, their level of stress, their family relations, even their economic woes. One example, from many we heard during the experts we spoke with: a woman reports to the doctor some vague abdominal distress. Obviously this could have a great variety of causes, from diet to cancer, but the true cause of the illness only came DENNIS NOVACK: A full half of out when the doctor spent enough time with the patients in this country who her and built the rapport which allowed her are depressed and go to primary to open up. It turned out that she had an care doctors don’t get recognized. abusive husband and her stomach pains So those patients continue to were a direct result of her highly stressful suffer. family life. It is easy to see that, without this understanding, this same patient would be sent for innumerable, costly tests and no physical cause would have been discovered. In the few minutes of a typical medical interview, building trust seems like such an impossible task that many doctors don’t even try, yet sickness and health never exists in a vacuum. To get the most from a short interview, a large HMO organization supplies doctors with a checklist. Number three on the list is “Demonstrate Empathy.” It sounds like a joke but alas, HMOs don’t joke. For your doctor to establish rapport and to express empathy with you is not just a question of being nice. Despite all the hi-tech tests available, simply talking to you and getting you to open up remains an important diagnostic tool. Unfortunately this crucial aspect of medical care is not valued and certainly not well compensated.

When a person is dealing with an illness they are dealing with their mortality, and really important things bubble to the surface. As physicians, we must take the time to hear them. The simple act of listening, honoring their life, and treating them with respect helps them to cope with whatever it is they are facing. It gives them strength, it gives them dignity, and it helps them to heal.

ROBERT JAFFE:



building a relationship ELLEN BECK: The role of a healer is to create a bridge of trust with the

patient — a bond of humanity allowing the patient to take charge of their life, and achieve well-being. Whatever that takes. It might be the right diagnosis, it might be medications, but it also could be helping them find a way to manage the many stressors in their life or letting them know they’re not alone in the world.

The body is the easy part. Any good doctor will recognize someone who is having angina or someone who needs a stent to prop open an artery. Yes, I can lower your cholesterol, yes, I can recognize in a second whether you need a catheterization, but that’s only one piece of the puzzle. We need to look at the person globally. It’s the emotional-mental-physical-spiritual aspect that is really what makes up the whole person. I cannot treat the whole person unless I have all that information.

MIMI GUARNERI:

When patients go to see a primary care doctor and the doctor says, “Well what is wrong with you Mr. Smith?” It has been shown that, on the average, they have just 19 seconds to respond before the doctor starts what is known as the medical interrogation — a series of questions to quickly get to the disease, the diagnosis, and the treatment. Think about that. The patient has 19 seconds to say something like, “My father had a melanoma and now I’ve been out in the sun a lot and I’ve got a spot on me. And maybe I won’t even tell you that I’ve got it because I’m too fearful that you’ll tell me that it is cancer.” How do all these feelings get pushed into 19 seconds?

ARTHUR KLEINMAN:

of all, about 75 percent of all diagnoses in primary care are based on the history. So just being skilled in taking a history, being good at the interview, being human enough to let someone tell what really matters to them, is an essential part of making a diagnosis. So even the technical side is to some degree embedded in the human. In the initial encounter, our first goal is to address the problem in a responsible medical and professional way — the reason that the person came in — whether they have a fever or they have a lump or bump, or a mental illness; whatever it is. The person must feel that somebody listened and somebody cared. Over time, you can address other issues but you need time to build trust.

ELLEN L. BECK, M.D. (UNIVERSITY OF CALIFORNIA, SAN DIEGO):

I love it when patients cry in my office. If a patient is crying, it means that they are crying about something very important in their lives and that is often exactly what I need to find out about in order to be able to help them. Also, if a patient cries it shows they trust me. It means that I have established a trusting relationship which can be the foundation for healing.

DENNIS NOVACK:

Many younger physicians tend to be more aloof. They do not engage patients in conversation or ask simple questions to get to know the person that they’re taking care of. Questions like “What do you do for a living? Are you married? Do you have kids? What were you up to before you got sick? What are your hobbies? What do you hope to do after the operation is over?”

ROBERT JAFFE:

Doctors need to learn how to slow down and to listen, until people are able to say all they need to say. Things will come out that won’t emerge unless doctors ask open-ended questions such as, “Is there anything else you want to tell me?” They must not ask that question when their A doctor explained the function of hand is already on the doorknob and their prescribing pills at the close of a body language is saying “please I’m already brief consultation: “It’s a nice way of late as it is.” getting rid of the patient; you scribble something out and rip the thing off the pad. The ripping off is really the ‘f**k off’.” 4 Roy Porter

With all the technology available to them, many doctors think that this talking is the touchy-feelie, soft side of medicine, so why pay attention to it. Many think that what is really important is getting the X-ray or giving the antibiotic. But it turns out that this thing is really important in many ways, because, first



I thought up a series of questions that could help the doctor find out what really matters culturally, socially, and personally in a patient’s illness. ª What do you think is wrong? ª How does it affect you? ª What do you think caused it? ª What do you think is going to happen to you in terms of the course of your illness — will it get better or not? ª What do you want as the treatment? What do you not want? ª What do you fear most about this illness? ª What do you fear about the treatment?

ARTHUR KLEINMAN:

Asking questions like that is an attempt to open a conversation and get at what’s really at stake for the patient. I teach the students to ask the patient, “What are your sources of strength?” If the patient says “What do you mean?” you can give them some examples. Maybe they find strength in listening to music or going for a long walk or reading. When the patient tells you their source of strength, you can even write them a prescription, in addition to their Western-medicine pharmacy prescription. You can prescribe one long walk weekly or a hot bath nightly, listening to music twice a week or something similar. People are very grateful for that because you have gone to the person and identified what is important to them.

ELLEN BECK:

need. It is pointless to focus on fixing a body part while not having a clue about the person that you’re taking care of. It seems ridiculous, but that is how most medicine is practiced these days. In my experience, even in the very short period of the interview, the truly great physicians can somehow establish a connection with a patient that makes the patient feel as though they’re existing in all three dimensions. The doctor appreciates that the disease that they have actually has a ripple effect and expands out to influence many different aspects of their lives. The best physicians can make people feel that they have been understood.

SHELLEY ADLER:

When you sit with someone you hear their story, you hear about the circumstances of their life, their relationships. Do they have stress caring for elderly parents? Or are they under stress because they must take care of a grandchild? Is there illness in the family? How are they doing at work? What kind of environment are they in eight hours a day?

MIMI GUARNERI:

After we learn about who we are talking to, there are also more formal ways of screening people. For example, you can screen for depression. There are quick screens that enable you to say this person shows a high risk of suicide or for high stress or alcoholism. These are things that we can do right up front. But you must begin by asking the right questions and really listening to the answers.

During a medical encounter, most people want to be seen in the fullness of their lives and they want to have their specific concerns understood. There is more going on in any particular condition than is seen in the narrow view of most medicine. There are all kinds of complications based on a variety of things — their culture, their socioeconomic status, where they are in the world, their profession, and their friends. What they experience when they have a disease, they don’t experience in just one organ of their body; they experience it as a whole person and in its effect on other people around them.

SHELLEY ADLER:

In my town they have a good ambulance service. Anyone whose heart stops beating gets picked up by these really expensive trucks, and these paramedics come out, and they start doing CPR and administering drugs. You are taken to a great hospital, put into an expensive room, given a bunch of expensive medications. And then, when you are stabilized, you may find yourself right back on the street with a bottle of wine in your hands or at home with all your old problems. At great expense, we give a person another few days, or a few months of life but have no idea who they are or what they really

ROBERT JAFFE:



the context of illness Medicine is caught in an iron A physician must consider more cage of rationality. Increasingly medical practice is than a diseased organ, more filled with algorithms. You see a set of sympthan the whole man. He must toms and you follow the book in treating them. view the man in his world. But where does the patient come in? Where is Harvey Cushing, M.D. the individuality of the person, their family, their social class, their ethnicity? Where does an issue like culture come into that?

ARTHUR KLEINMAN:

There is a painting by Jan Steen, the great Dutch artist of the 17th century. In it, he portrays the doctor in the home of the patient and you can see the whole domestic setting of care, the sensitivity, the sensibility, the attention to emotion and to family and to the illness experience as a part of a life.

Starting in the early part of the 20th century, and especially after the Second World War, doctors began moving their practices to hospitals and clinics, and they weren’t visiting patients in their homes anymore. So this whole domestic setting for care disappeared. You enter the aseptic environments of a clinic or a hospital. You strip off your clothes, you put on that hospital johnny, and you become an object of observation for MRIs and brain scans and PET scans. All these are critical for the medical care at a technical level. But how, in the middle of that, do you maintain the human connection with people? Do we train receptionists to deal with you so that you don’t feel stripped of your humanity? Do we train technicians to be as caring as they are technically competent? I have my doubts.

ARTHUR KLEINMAN:

When I was growing up, my uncle was a family-practice physician, with a room of the house as his office. He would know his patients because they were people from the neighborhood. He would know who their spouse was, who their kids were; he would know something not only about their physical body, but about their lives. When you know someone’s life, then in a crisis you know how to act. You know that chest pains can be from heart disease but they can also be from panic or grief.

MIMI GUARNERI:

I was attending on the wards and an intern was presenting a patient who was just transferred from the ICU. She was a 33-year-old woman who had had her fourth asthma attack this year. In the ICU she had needed a breathing tube inserted because she was so very RACHEL REMEN: The important sick. As she was now doing better, the intern thing for me in working directly thought that within a couple of days we could take one-on-one with significantly ill her off the IV medications and ship her home. It people is to listen generously to seemed very straightforward. Then I asked the them, without any judgments question, “Why does she keep getting sick?” or expectations, to listen for Nobody had the answer. I suggested that we go those things below the surface. and talk to the patient.

DENNIS NOVACK:

It turned out that this young woman had been a crack addict years ago. She had given up drugs and had been clean for twelve years. Then her mother died suddenly and she was feeling tremendously guilty. She went back to crack. Now addicted, she had no health insurance, no money to buy medications, and nowhere to live.



That is a great example of why we need to find out about patients lives and the context of their illness. To care for this woman, we have not only to treat her asthma, but we have to get her some help for her addiction, we have to help her with her housing, we have to help her forgive herself for whatever she needs to forgive herself for in relation to her mother. She needs some counseling about that. There is so much we need to do for this woman that has nothing to do with finding the right cocktail of asthma medications. That’s the bio-psycho-social model for practicing medicine.

DENNIS NOVACK:

One of the major objections to practicing this form of medicine is that a doctor’s time is too expensive. As with most people in her situation, this woman with asthma may be referred to an overworked social worker who can offer little help. The result is that she, and people like her, are costing the system, one way or another, tens of thousands of dollars for each of her hospital stays. Practicing medicine in this way is not only inhuman — it is also inefficient and in the end much more costly than attempting to deal with the larger picture of the person’s illness.

Our health care system generally intervenes only when there is an acute crisis. I am hoping we have enough sense and will and determination to turn it around so that we start with individuals when they are well and design a road map for health that is personal for them. The road map will account for what they have inherited and where they are now with their health. It will disclose what is their likelihood or susceptibility for future health problems and what they can do to avoid it. For example, if an individual has a high likelihood of developing diabetes, we could advise that individual what changes they can make in their life and work with them to minimize the likelihood of the disease occurring.

RALPH SNYDERMAN:


In medicine today, we spend most of our time and money on the late stages of chronic disease. For example, a heart attack is a consequence of a coronary artery disease that has persisted for many years, if not decades. And then after all this time, the person suffers a heart attack and we treat the heart attack. But we ought to do something before that heart attack occurs. We now emphasize cholesterol-lowering statins, diet, and exercise to prevent coronary artery disease and that is a very good approach. But I think we could do far better in intervening well before the damages occur. This is not that hard to do. We have the capacity right now but need to develop the will to do this. We need to educate physicians to think this way. Part of this education in my view is integrative medicine, because it focuses on the individual as the center of the health care system. It starts with them and hopefully looks forward in time with them. It is a system of personalized health care planning. At the center of health care ought to be a close working relationship between a person and the health care system — doctor and patient. That is not radical. It should not be considered a new approach. Unfortunately the health care system has drifted so far away from this concept that bringing it back has required a new name, “Integrative Medicine.”

MIMI GUARNERI: If you have heart disease and have a stent put in, that means you have an eight-millimeter piece of metal to open your artery. But your vascular system goes from the top of your head to the tips of your toes. We have just fixed eight millimeters of it. What about the rest of it? What about everything else that has led up to this problem?

integrative medicine Many of the doctors we interviewed during the course of this television series practice what is called “Integrative Medicine.” This medicine is integrative in the sense that it incorporates the best of Western technical medicine with the holistic, human side of medicine that is a vital aspect of our health and healing.

It is often not enough simply to give patients medication and procedures. Integrative Medicine embraces the idea that the patient is a mosaic of the mind, the body, and the spirit. So if we only pay attention to the body, and we don’t pay attention to the mind, or the feelings, or the spirit, then we are actually not practicing effective medicine.

ELLEN BECK:

Integrative Medicine is what many of us are thinking the future may hold. It means being able to offer patients a full array of choices, from conventional medicine to those complementary and alternative strategies where we have scientific evidence that they work and that they’re safe. There’s a real

MARGARET CHESNEY:


interest in this subject and medical schools across the country are informing practitioners about effective complementary strategies so that doctors will have more to offer their patients. When we think about good medicine, we need to focus not just on the healing of disease, we need to give people all the tools that are available so that they can have the best quality of life possible and a sense of well-being that is both physical and mental. Only then do I think that we’ve done our job. We must recognize that patients can benefit from improved nutrition, from certain vitamins and herbal treatments. There may be problems, particularly musculoskeletal problems, where manipulation or massage is a heck of a lot better than surgery or a drug. There may be approaches such as mindfulness meditation or various forms of self-hypnosis that reduce stress, reduce pain, and allow the illness to be more tolerable.

RALPH SNYDERMAN:

Integrative Medicine is more than a couple of New Age treatments thrown into the mix. It has to do with finding whatever treatments and approaches are best for that particular person, putting the patient in the center of care. When somebody comes to our Integrative Medicine Center for an assessment, we look at the whole person, the different emotional, mental, and physical factors, environmental facts, and family dynamics. We also look at the person’s health from a nutritionist’s point of view or an acupuncturist’s point of view to get an enlarged picture of what’s going on with that particular person. After all this, and taking into consideration the person’s beliefs and preferences, we will try to come up with a plan of action. Those will include things that they can do to help themselves and those therapies that we do for them. We are trying to establish a partnership.

BRIAN BERMAN:

A medical student once said to me, “I find this experience boring because everybody is coming here with the same disease.” I found this comment very troubling because he didn’t see that every person is unique. We may all suffer from similar diseases — diabetes, high blood pressure — but in each person that illness is unique. It is not the diabetes that we should be looking at but a person with diabetes. How the disease presents More important than knowing itself in each individual will be totally different what kind of disease the patient because a different person is at the center of has, is knowing what kind of the illness. How will they manage it? How will patient has the disease. they cope? William Osler, M.D.

ELLEN BECK:


The patient’s disease is what pathology they have, what we can see under a microscope, what we can understand from a laboratory test. But the patient’s illness (as opposed to their disease) involves all the meanings that the patient brings to their symptoms. Contributing to how they react to the disease are their worries, their personal background, and their histories. It is the experience of the disease, not just the disease that the physician must understand and treat.

DENNIS NOVACK:

There used to be an interesting test called the “Life Events Scale.” It gave a number of points for various things that could go wrong in a person’s life — the more distressing, the higher the score. So, a sprained ankle — no big deal — would get a low score, while someone’s divorce or the death of their child would get a very high score. But what if the patient is a dancer and earns her livelihood by dancing, or is a professional athlete who suddenly cannot go to the Super Bowl to fulfill his life’s dream? To them, this sprained ankle is everything. So you have to view the illness in the context of a person’s life. It is the practitioner’s responsibility to give each patient the choices so they have the highest quality of life possible.

MARGARET CHESNEY:

Good medicine is practiced when we work with the whole person. A sprained ankle would be an inconvenience to one person; for someone else, it would be a career-ending disaster. In a similar way, what might seem to the doctor like a small nuisance side effect of a prescribed medication might interfere with something incredibly important to the patient. There is no “one size fits all.” Where people are in life, what is their belief system, how much they’re willing potentially to undergo and suffer in order to live, these things vary greatly from individual to individual.

JEROME GROOPMAN:

The patient is the expert on the illness since they are living with it day after day. An example: a man with diabetes suddenly becomes suicidally depressed and will not participate in his care. As his doctor you’re wondering “what’s going on here? Let’s get a psychiatrist in to give an antidepressant.” But then the psychiatrist comes in and speaks to the man, and gets the story that the doctor should have gotten in the first place. We find out that this man’s grandfather had diabetes leading to peripheral vascular disease. He had his leg amputated, first below the knee, then above the knee, and then his other leg and then his grandfather died of complications of infection. We then find out that this guy’s father went blind from his diabetes; so when this man is told that

ARTHUR KLEINMAN:


he has diabetes, he completely falls apart. You need that story to understand who that man is, what that illness experience is, and how you’re going to deal with him. In the absence of that story, you’re practicing veterinary medicine.* You cannot just walk in and say, “Well, we fixed your heart, you’re great, okay, see you later.” You have to be comfortable asking a patient what their concerns are, but if they don’t bring up their concerns, you can say something like: “It’s an embarrassing topic but a lot of patients will be concerned about sexual activity after an operation like that. Is that one of your concerns?”

DENNIS NOVACK:

understanding a patient’s culture I think one of the biggest misperceptions about culture is that it’s something that other people have. When we talk about ethnic food, we never think about hamburgers and hot dogs. The truth is that everybody has culture and everybody has an ethnic group as well. This is a challenging concept for physicians. We all tend to look out from our group. We all see the world through the lens of whatever culture we are from. That is how we all make our decisions.

SHELLEY ADLER:

They have a million concerns. They’re in pain so you have to treat their pain, but you also have to treat their suffering. They may feel guilty — a patient may say, “My wife has been telling me to stop smoking for 20 years, now look what I’ve done, I’ve put such a burden on my family.” They may be tremendously worried about their ability to care for their family in the future. All this is part of what’s going on with them — not just the disease. Often what we think or feel about a disease may limit us more than the disease itself. What you believe about your illness and what you believe about your potential may have more impact on your life than your disease does. Everybody has seen people with very significant physical challenges or disabilities who live full and active lives. We also know people with minimal physical problems who have become invalids because of the way they think of themselves and their potential.

RACHEL REMEN:

Knowing why a patient believes that he or she is ill will help us to understand the whole context in which a patient is operating. In our community we have had a lot of Russian immigrants and many were complaining of heart pain. The physicians recommended them for all kinds of cardiology workups until they realized that their patients were talking about emotional pain. Many cultures, for no particularly good reason, think that the heart is the seat of the emotions, as opposed to the brain or another organ. There is nothing about the heart, a pump, that should make it the seat of the emotions, but that’s how we think about this in our society. In some Southeast Asian cultures, for example, in the Hmong society, the liver is the seat of the emotion. And when you are devastated, you are broken-livered. Knowing how a patient thinks about things makes it much easier to communicate. It makes the dispensing of medical information much easier because a physician knows in what way to describe things. The best physicians I know are not the physicians that spend the most time with their patients or the ones that ask certain types of questions. It is not as if there’s a rote list of questions that you can memorize and then ask. The good doctors are those who take the time to listen to what the patient is saying and consider the patient in the full context of his or her life.

*I made this statement a long time ago and I was corrected by the American Veterinary Association. They explained that good vets really do pay attention to the psychological side of the animals they treat.



What do we expect for ourselves in the world? Do we expect that good things will happen to us? Do we deserve to be cured? Do we have a belief in fate or in the effectiveness of our own action to make our lives better?

DENNIS NOVACK:

Coming from some cultures, a patient might feel that they deserve this illness because they’ve offended their ancestors in some ways. That is what they’re bringing to the interaction with the doctor. If we, as physicians, don’t recognize that underlying belief and just tell them to take the drug, they may very well not get better. I had a patient, a very religious woman with breast cancer who was convinced that she had no reason to be treated, even though that treatment could well save her life. She felt she was undeserving of hope because she was in a desperately unhappy marriage and she’d had an affair with another man. She saw her breast cancer as a punishment from God. And given that God controls everything in the world and ordains your fate, this was her just due, there was no reason to hope, no reason to try to get better. I could write prescriptions for her from now till the cows come home but she wouldn’t take them. I could offer procedures to remove the cancer and radiate her chest and maybe even eradicate the tumor but she would refuse this because she felt she was undeserving of life.

JEROME GROOPMAN:

Doctors know a great deal; they see people who are vulnerable and it’s very easy for a doctor to be the one in charge. On the patient’s side, it’s very easy to be the one who is being bossed around. Maybe it’s easier not to be so afraid if you feel like you’re doing what the doctor wants rather than trying to figure out what you really want yourself.

MAEVE KINKEAD (ACTRESS, WRITER, AND CANCER SURVIVOR):

Maeve Kinkead is an actress and a writer who was diagnosed with breast cancer. Naturally she wanted to be cured but it was also very important to her to preserve her breasts. Her story highlights the approaches of two doctors — both were highly competent in dealing with her medical needs but radically different in approaching her needs as a human being.

Maeve’s story – a tale of two doctors

I’m very adamant that one must never put one’s own belief system onto someone else. If somebody believes in Allah, don’t bring Jesus into the encounter. On the other hand, for so many people, faith and prayer are their sources of strength. If a patient tells you that prayer is important to them, then, I believe as a physician, you may bring this into the encounter, as long as it is the patient’s method of prayer, not the doctor’s.

ELLEN BECK:

We had a patient, a wonderful Somali woman, who was dying in the ICU. At the hospital the family would pray five times a day. They would kneel around her bed and pray. We had a sheikh come in and read the Koran. The family wanted to prepare her hair in a certain way before she died, and use special water from Mecca that they sprinkled on her. All this time I’m thinking that it is amazing that we are doing all this in the intensive care unit. The physician is the person who can make that happen in the ICU, who can say, this is what is important. The intern, the family, and I were actually standing around the bed holding hands, and we were sharing stories from her life, how she had been a wise teacher for us. Afterwards, the family thanked us. They felt that she had had a good death.


I was always the obnoxiously healthy person, always. I never got a cold. I never got the flu. I knew that a woman of a certain age should have mammograms. But I had a lot of things going on in my life and I let three years go by without having a mammogram. When I finally had one, I wasn’t too worried because I knew I was healthy. This time the outcome was different. They found something suspicious. My OB-GYN sent me to a breast surgeon.


I went to the appointment and did what everybody does. I went into the little room and I was standing there in my paper shmata, examining the whole room, thinking that if I took notice of everything in the room, surely everything would be all right. The door flies open and the doctor comes in and before she introduced herself she said to me, “You have not one lesion but two!” The effect of this was devastating, and I didn’t even know what a lesion meant. I suddenly felt demoted from being a healthy person to not knowing what was going on. I don’t think I ever really got over that initial experience. I felt off-balance. I felt attacked. I certainly was not impressed with her bedside manner. I had a biopsy and on the next visit, she was extremely clear on the information she gave. She told me that I had DCIS. She told me what it was. She told me what the options for surgery were. I was trying very hard to keep a sense of control, which for me meant understanding what was going on. So as I was shaking, I was taking notes. She indicated there were two alternatives. One was to have a lumpectomy and one was to have a mastectomy. At that point I was completely in a panic, because I could not understand why if what I had was called zero-grade cancer, why anybody was using the “m” word. That seemed to me radical surgery and horrifying. I was in shock and in grief at the same time even to hear that word. During the discussion, however, all my energy was focused on being the good patient, asking all the smart questions — whereas I was really feeling shattered. I think I was trying to understand as much as I could and stay in control as much as I could. So I couldn’t really factor in another feeling that I was having at the same time — an overwhelming feeling that I didn’t want this person to be my surgeon. Instead, everything that was coming out of me was, “How can I please you?” I asked her, “If you were in my shoes, what would you do?” Which was really stupid, because what I should have been thinking about is, “What do I want to do?” And in fact I already knew what I wanted to do. No way did I want to have a mastectomy. I wanted to try and keep the breast if I could. The doctor answered, “Well if it were me, I would probably have a double mastectomy.” At that point I almost passed out.


My husband said, “We will probably want to get a second opinion.” And her response was, “You really don’t need to do that. Any surgeon worth their salt will tell you what I have told you.” All this made me feel that she had an agenda that she knew best, and if I was at all smart, I would simply do what she was saying. I knew I didn’t want to do that, but I was also really very frightened and very at sea. I didn’t have enough information. What she had presented was very clear, but it was very simplified, which for me was not helpful. I felt it was improper to ask all of the questions I wanted to ask because she was a busy woman. And beyond that, she scared me. After we left, I had that feeling that people talk about when they’re in an accident and there’s no sound in the world. It’s that kind of isolation and fear. It’s like you’re losing something very palpable that you’ve always had, some sense of reality. I immediately got on the phone with a friend of mine who’s a doctor and I described the interview and repeated that the surgeon had indicated that there was really no need to consult another surgeon or get a second opinion. He said, “Oh, she said that, did she?” And then he laughed. And at that moment I thought, oh, maybe everything’s going to be a little okay. Then he asked me, “How do you feel about being with this doctor?” And I was quiet. Because I didn’t really want to think about how I felt about being with this doctor. He explained to me that it’s extremely important for you to work with a doctor whom you choose, with whom you feel comfortable. It’s important clinically, it’s important to how you do. It’s important for you as a person. “You need a doctor who makes you feel empowered and smart,” he said, “You don’t need a doctor who makes you feel passive and dumb.” For me that was absolutely true: I was feeling passive and dumb, like I was being led to the slaughterhouse. It wasn’t working. I was terrified and I wanted to get away. My friend sent me a paper to read that made me realize that there were lots of different opinions about the particular kind of cancer I had. It said that some women do opt for a mastectomy because that’s the best thing to do for them. Other people don’t want to do that.


That was the big turning point. I was getting some of my strength back, getting a feeling of control. I saw another surgeon whom I liked immediately. There were big differences between my talk with her and my meeting with the first surgeon. I didn’t feel a time pressure. I felt free to ask stupid questions and I had a lot of stupid questions. She said, “You don’t have to make your mind up right away. This is a very complicated situation. It’s not just the information; it’s not just the percentages; it’s the emotion of it and you need time to absorb it.” I felt returned to the land of human beings. I remember that on the way out of the office, she touched my hand slightly, very naturally. It wasn’t like she was going to hold my hand in a melodramatic way, but just that she would do that interested me. My reaction was very strong. She was letting me see herself as a person who was making a natural gesture to somebody whom she could tell was distressed. I liked that and I liked that I was able to tell her that it was a priority for me to remain a two-breasted person. She gave me pretty much the same statistics that the other surgeon did. She didn’t whitewash things. She said, “If you want to try what we call breast conservation therapy that’s a perfectly good decision.” I had trust in her. Each time I saw her, I went away from her feeling better. With the other doctor I had left feeling worse. I’m really grateful to her and I’m really grateful that there are doctors who are well trained, who are expert, but give you a little room, give you a little time, give you space. They give you the sense that it’s your body and it is your life.

what can you do? There are a few pointers that your can take from the proceeding chapters when managing your own medical care. CHOOSING YOUR DOCTOR

Choosing the right doctor can make the difference between life or death, dignity or humiliation, healing or suffering. Yet, most people put less thought and effort into choosing their doctor than in choosing a car. For example, many people simply scan a list provided by their insurance company or HMO. STEP 1: How to judge whether a doctor is medically competent. Ways to tell include:

a. Quality of medical school b. Quality of residency c. Lack of license revocation or malpractice suits d. Admitting privileges at a good hospital STEP 2: How to determine if a doctor is right for you.

It is very important to find a doctor who makes you feel comfortable. This is not just about “good bedside manner.” This is important clinically — it can affect the outcome of a health problem. Ask yourself these questions: ª Do you feel comfortable enough with your doctor to call him or her about your concerns at any time of day or night? ª Does your doctor take the time to learn about you as a person, not simply as a “case”? ª Does your doctor really listen to you and understand your values and preferences? ª Do you feel that your doctor is willing to spend time with you and become a partner with you in dealing with your health over time? ª Do you feel empowered and smart when you are with your doctor or does your doctor make you feel childlike or dumb? STEP 3: How to find a doctor that is right for you.

You should shop carefully for your doctor. It takes real effort to find the right doctor for you. Here are some tips on finding a doctor who is a good “fit”: ª Ask friends whose judgment in such matters you trust. ª Get referrals from nearby medical schools or major medical centers.



ª Check the names you find on the Internet.

TAKE YOUR TIME.

ª Then interview or try out different doctors.

As we have seen from Maeve’s story, don’t allow your doctor to rush or bully you. As Maeve said, it is your body and your life, not the doctor’s. Except in those few life-threatening situations that do require immediate intervention, take the time to decide what you really want. It takes time to absorb information — to absorb and understand it intellectually and emotionally. And certainly, with any major procedure, get a second opinion, if only for your own piece of mind.

“Don’t give up — they’re out there, I know many of them.” Ralph Snyderman from Duke tells us, “My own physician is that way and I wouldn’t have it any other way. If your primary doctor is not such a person, I would look for another. There’s too much at stake to compromise on your own physician.” ª If you make a choice and several visits down the line find out you can’t talk to this person, he or she doesn’t give you time, or doesn’t pay attention, move on. PREPARING FOR THE VISIT

ª Make lists and take notes ª If it is a first visit, gather your prior medical history, information, and data beforehand so you don’t waste visit time. This information should include descriptions of prior acute and chronic diseases, accidents, trauma, hospitalizations, and surgeries, as well as a list of the medications you are currently taking — both prescription and over-the counter — both traditional and alternative. The list should state both the name of the medication, the strength of the medication, and how many times a day you take it.

THERE ARE NO STUPID QUESTIONS.

It is normal to not understand something. It is normal to forget or be unable to absorb a lot of information the first time you hear it. Do not be afraid to ask a doctor to repeat something. Do not hesitate to call your doctor (or the health care professional who assists him or her) later and ask for information to be repeated or clarified.

ª For each visit, prepare a list of your specific questions or concerns, and include your goals for the visit. ª Even an excellent doctor can’t read your mind, so be sure to articulate what is bothering you no matter how embarrassing or seemingly unimportant your concerns are. ª Insist that all your issues and questions be noted. Discuss which items are priorities, if there is not time to address them all. ª You have a right to your medical records. Get copies of the results of all your tests, procedures, immunizations, etc. Ask for explanations if you don’t understand something. Keep an up-to-date record of all medications you are taking. ª When you have an appointment where you might receive bad news, bring someone with you and/or a tape recorder to tape the session. Take brief notes when the doctor is talking, but do not let this interfere with listening and reacting.



chapter three

to treat Here is a telling statistic. In a recent survey 50 percent of respondents — half of those questioned — reported that they do not follow the course of treatment prescribed by their doctors.5 They gave a variety of reasons for this extraordinary level of noncompliance. Many felt that the doctors were being too aggressive, only ordering the test or prescribing a particular treatment to cover themselves against potential lawsuits. Others felt that their doctor did not have their best interests at heart — they felt they were really working for HMOs or even drug companies. It all adds up to a dramatic lack of trust. Much of this lack of trust inevitably comes from the simple fact that patients feel no connection with their doctors. They are not given a chance. More specifically, doctors do not, or can not take the time to DENNIS NOVACK: Thousands of explain the reasoning behind the particular years ago physicians were priests, treatment program they are prescribing. or shamans — spiritual healers. In this vacuum of support and hard inforWe come from that tradition. mation, many patients ask themselves There’s a lot of what physicians can questions such as, “Why should I take do today that derives directly from blood-pressure-lowering medication with that tradition, that sort of healannoying side effects if I don’t even feel ing, spiritual tradition. It’s just sick?” or “Why should I continue taking that we get so caught up in technology that we sometimes forget those antibiotics (which by the way are that we also have these priestly upsetting my stomach) if I feel fine after and confessor functions. The great taking only four pills?” or “Do I really have physicians will understand that to undergo the extreme unpleasantness and be comfortable with it. of a colonoscopy?” (Most people, in fact, avoid colonoscopies although that procedure has been proven to save lives.) If patients do not get a simple explanation from their doctor about why they should take a certain medication, what chance does a person have who must undergo complex, lengthy procedures? What chance is there to make drastic changes in their diet when it


could save their life? The answer to these rhetorical questions is, of course, no chance at all. In another recent survey published in the European Heart Journal, fewer than half of the cigarette smokers questioned quit smoking even after experiencing the wake-up call of a cardiac event such as a heart attack. Almost as interesting a fact — one-quarter of those who claimed that they had given up smoking were tested and found to be lying to their doctors. All had been told of the risks of continued smoking and had been strongly advised by their doctors to stop. Only 48 percent heeded this advice. The doctors who conducted the study found the results “unbelievable” and “worrisome.”6 But these results are not at all unbelievable. Tobacco is highly addictive and breaking the habit is, for some, excruciating. What patients needed was a lot of support and hand holding, exactly what they do not get from today’s medical system. The result is the health care crisis we face today — millions of cases of diabetes, heart disease, sexually transmitted illnesses, and other so-called lifestyle diseases that can be prevented or their severity reduced. A triple-bypass open-heart surgery costs well over $100,000. A diabetic on dialysis can cost more than $60,000 a year.7 The sick person and their family inevitably bears some of this cost and we, one way or another, must foot the rest of the bill in higher insurance premiums. Multiply this by the 24 million people diagnosed with heart disease 8 and the 375,000 patients in kidney failure 9 and we can see why our medical system is approaching financial meltdown. Much of this illness is unavoidable, but some can be prevented and just a little prevention can translate into huge savings in money and suffering. Dr. Dennis Novack of Drexel University reminds us that 50 percent of the causes of mortality in this country are related to modifiable behaviors such as smoking, overeating, and leading a sedentary lifestyle. Bad habits are extremely difficult to break and most people cannot do it unless they have a support network including an active partnership with their doctor or health professional. Preventing illness before it starts is yet another good reason why you should find a doctor who is willing to spend time to listen to your concerns. In truth, most patients do not have such a relationship — or any relationship at all — with their doctors.


making life taste better than steak In our television series, we followed a patient DEBORAH SCHWAB: It is very who had suffered from heart disease all of his difficult to change behavior. adult life. A hard-driving, successful business People like their vices. man, George [not his real name] had his first heart attack and bypass operation at 26, and a triple bypass at 35. He almost died of another heart attack at 40 and now, in his middle fifties, he lives with a stent holding open an artery. When we began filming him, his heart condition was so severe that he could hardly walk up a flight of stairs. Recently while boarding an airplane he suffered yet another heart attack. Effectively dead, he was lucky enough to be right near a defibrillation machine and was revived. With all this, George continues to eat a terrible, high-fat diet. He never seems to be able to relax and he has a large belly. It is tempting to blame him for not changing his ways but then we would also have to blame the vast majority of the American population who cannot or will not practice a healthy lifestyle. As one doctor put it, “Genetics may load the gun, but human behavior pulls the trigger.”

We have a population that is out of control. We know that eating properly, having normal weight, not smoking, and exercising are things that contribute to our good health. But when we survey the American population, we find that only 4 percent of women and 2 percent of men satisfy those four criteria. The other 97 percent of the population are practicing behaviors that lead to an accelerated risk potential for illness and disease.

WILLIAM MALARKEY:

Doctor Erminia Guarneri, a cardiologist (everyone calls her Mimi), is Medical Director and co-founder of Scripps Center for Integrative Medicine. George has enrolled in a program that she directs called “Healing Hearts.” The program provides a model for how medicine could be dealing with all chronic diseases.

In the Healthy Heart program we have a multidisciplinary team of professionals to work with an individual. I’m the quarterback, but as a physician, I can’t give the kind of attention that the team can give. In this program there is someone who can work with the patient to discuss his nutrition and show him how to cook healthy meals. There is someone teaching him yoga, meditation, and breathing techniques to lower his level of stress. We also offer group support where he can go and feel connected to other people in his situation and not feel isolated. So we are not just focused on the heart, we are really trying to help patients like George get their life back.

MIMI GUARNERI:

George could be a poster boy for all that is good and bad about modern medical care. He is alive today because of his open-heart surgeries and daily handfuls of expensive drugs. But up until recently, all of his hi-tech medical care only focused on that one organ, his heart. No one has helped him make the lifestyle changes that perhaps would have kept his heart healthy.

No one ever got to the root of George’s problems. No one had ever taught George how to do the things that could really change his life.

MIMI GUARNERI:



One of the things we have lost in medicine is the partnership between patients and physicians. We evolved in medicine an approach that says, “When you break down, we’ll fix you.” We do this instead of sitting with someone and saying, “Let’s take a look at why you’re here to begin with. What are your risk factors, and what can we do together?” When my patients know how much I care about them, and how I am committed to them, it gives them commitment for themselves. If I’m an invested physician, I expect you to be an invested patient. And now we become a team.

MIMI GUARNERI:

Many people come to us not believing that it’s possible to change. They may have read the latest magazine and tried a new fad diet, stuck with it a week, and because it didn’t work they feel completely defeated. That is how the partnership can help. Most of us simple humans need support, need people encouraging us. It is often baby steps. You might be able to get someone sedentary to begin walking their dog. Then you help the person get ready for the next level. There will always be setbacks — because it’s not easy. The important thing is not to give up. We know what we have to do with George. We have central weight we need to get rid of, we have a low HDL that needs to come up, we need to prevent diabetes, we need to get exercise going, to lower blood pressure and decrease weight. Knowing this is the easy part. The real challenge is to motivate him to make lasting changes.

the teachable moment Doctors work to preserve our health and cooks to destroy it. More often, the latter are successful. Dennis Diderot (1713-1784) French Philosopher

For a doctor to motivate you to change, she must get to know what makes you tick. That is where the listening pays off. Motivation may come from your faith in religion or your desire to live to see your grandchildren or fulfill your life’s ambition to visit the Taj Mahal. It is the job of your caregiver to discover what things will motivate you to change your behavior and strengthen it.

It may sound strange to put it this way, but you have to want to live. You have to decide that life tastes better than steak. How do we get you to feel impassioned and empowered about your own life? Many people, say, “Give me the drugs, and pass the bacon and eggs.” But just taking the drugs doesn’t get to the root of the problem.

MIMI GUARNERI:

The doctor’s wise advice will fall on deaf ears if it is not hooked to something that matters to the individual. Change is a very hard thing to do. The only time it works is when it comes from within. The hierarchical system — where the doctor knows everything, the patient knows nothing and is just supposed to do what the doctor says — doesn’t work. The patient must decide that this is what they care about in life. Only then are they ready to make the change.

TRACY GAUDET:

It means working with a patient to figure out what is the best treatment for that individual. That treatment has to be in concert with his or her beliefs and stage of life and relationships and so on. I need to be sure that I can communicate and explain to a patient what is wrong, what might be a series of choices about treatment and the range of outcomes. I need to do this because it is the person, the patient, the sufferer whose life is ultimately on the line and the decisions made have to be sculpted to that individual. Sometimes people may give up when actually there is a great chance to be cured. You, as a doctor, have to find out why they are giving up. It can make the difference between life and death for the patient. Without partnership you are driving blind.

JEROME GROOPMAN:



You must spend time with somebody during what medical professionals call the teachable moment when they are most compliant. It is basically that moment when someone is very ready to learn about what they need to do to achieve an outcome. If you hit them at the right point in time and have prescribed a program that is achievable, given their particular lifestyle, they are much more apt to sign onto it and say, “I can do this.”

compliance — taking your medicine

A Laotian man I saw in our clinic was a heavy smoker. He brought his daughter to me because she had recurrent ear infections. In spite of all the troubles he had had in life, he had this beautiful daughter who loved him and he loved her back, and he could be a good father to her. His child was the greatest source of meaning in his life.

RALPH SNYDERMAN:

DEBORAH SCHWAB, R.N. (BLUE SHIELD OF CALIFORNIA):

ELLEN BECK:

We had talked to this man about the fact that his heavy smoking was hurting his health, to no effect. Then his daughter asked him, in our presence, to stop smoking. I will never forget that moment. He did; he never smoked again. We had helped to make a connection between the problem that he had — his smoking — and the meaning in his life, which was his daughter. And when we helped him make that connection, he was immediately able to transform his life. I think, because of the pace of medical practice these days, or because we are not taught how, physicians miss that moment when we could help a person do something like this. How often do doctors sit there saying, “Why don’t you stop smoking?” It would have had absolutely no effect on the Laotian patient because he didn’t value his own health enough. His daughter was his life and, because of her, he stopped smoking. She is in college now. He comes by every so often and shows me pictures, and he gives me this big smile, and we remember the story from a long time ago...


It may be hard for you to alter your lifestyle but, as noted in the opening of this chapter, if you are typical of most people, chances are that you don’t follow your doctor’s orders to the letter. Non-compliance is a major problem in medical care today.

Congestive heart failure is an increasing problem in the United States today. In this condition, the heart doesn’t pump well enough to provide sufficient oxygen for the body to sustain itself. This is a major cause of death in people who have survived heart attacks. Five years ago, we analyzed several hundred patients that had been seen in very good medical centers who were being treated for congestive heart failure. We discovered this startling information. Fewer than 30 percent of them were taking their medications appropriately. The result was that they were having a lot of problems, suffering from many symptoms of the disease.

At Duke Medical Center, we wanted to see if we could improve this compliance. We established an intensive program in which we gave patients a book to record their weight every day to see if they were retaining fluids. We gave them a health care coach who would check in with them once a week to see how they were doing. With these simple interventions, we managed to increase compliance to 75 percent. The effect of the people who went from not complying to complying was dramatic. There was an incredible decrease in symptoms and we cut the cost of their care almost in half. We achieved all of this just by having people do what they’re supposed to do; changing their diet to minimize salt, weighing themselves to see when they were retaining fluid, and making sure they’re taking their medications appropriately. This study shows how important it is for individuals to take ownership and responsibility for their health care. The health care system must understand that it is our obligation to provide people with the tools that they need to take this type of ownership for their health. Some people with a serious illness may say, “You know, Doc, I don’t want to know anything. I’m putting myself in your hands; don’t tell me, this is all too scary.” That doesn’t work. I don’t want to terrify patients and I don’t want to overwhelm them with unnecessary technical information, but they do need to know what has happened because of their illness and what will happen during the treatment. I need them as a partner who is aware of what is happening.

JEROME GROOPMAN:


With chronic illnesses like diabetes or heart disease, health care necessarily involves a long-term relationship between doctor and patient. You must know a patient’s vulnerability factors, what sort of support system they have, and what are the conditions under which treatment can be best given. These factors will tell you what might lead to non-adherence, why people are not following difficult medical regimens.

ARTHUR KLEINMAN:

I think the reason that people experience trouble complying with a particular regimen that has been prescribed is that it is irrelevant to their lifestyle, or they don’t understand the effect of the medicine, or they just can’t take the medicine at the right time.

DEBORAH SCHWAB:

MARGARET CHESNEY:

Here is a specific example of how understanding a person’s situation has a direct bearing on compliance. In a big city, a study was done on bus drivers with high blood pressure and it was discovered that their blood pressure was not under control — a potentially life-threatening condition. All of these bus drivers were prescribed a diuretic, a drug that inhibits the retention of fluid. The side effect of taking a diuretic is that you must urinate frequently. But bus drivers must keep to a rigid schedule and are often caught in traffic and do not have the opportunity to take frequent breaks to use a restroom. So they stopped taking the medication and their blood pressure shot up. It took a really good clinician thinking like a detective to understand that this was the problem. Once they understood it, they could address it, both in terms of talking with the bus drivers about their schedule and prescribing other medications that would better fit into the lifestyle of someone who’s not able to use the restroom at their whim. In hypertension — high blood pressure — you have a disease that in most people shows no symptoms until they have a heart attack or a stroke. The drugs you give for hypertension often have side effects. From the patient’s point of view they are symptomless without the drug, but when they take the drugs, because of their side effects, they develop symptoms. They naturally ask themselves, “Why should I keep taking these drugs?” In fact, we have found that most people with hypertension do not follow the regimen. They don’t pay attention to lowering their salt intake and they don’t take the drugs on a regular basis.

ARTHUR KLEINMAN:


That is why I need continuous feedback about what’s happening. If I give you a medication, or a procedure is performed and we’re not partners, if you don’t recognize what might happen, if you don’t feel comfortable to report back to me what’s going on, that puts me, as your doctor, at a grave disadvantage. I cannot intervene quickly to limit a complication or to remedy something. If you are not enough of a partner with me to say you feel crummy or your energy is suddenly gone because of the drugs, I can miss something really important clinically.

JEROME GROOPMAN:

Ultimately, however, a patient with a very serious illness needs a feeling of hope in order to undergo all the trials and the treatments and the procedures. If they don’t have hope, if they despair, if they don’t believe there’s even a chance for them to prevail, then they won’t proceed with the prescriptions or the procedures. They will not participate in their treatment in the kind of active, engaged way that they need to in order to weather the illness and hopefully come out on the other end in remission.

owning your health We have this delusion that health care is somebody else’s responsibility. We can do anything we want in our lives and, if we get sick, the doctor is going to make it go away. Now, as an administrator who’s had responsibility for a large health care system, and as a physician who would love to invent a pill that can make all diseases go away, I wish I could tell you that it’s not your responsibility to take ownership of your own health care but, like it or not, it is your responsibility. The more tools you have to be able to take such responsibility, the more likely you are going to have good health and a good life.

RALPH SNYDERMAN:

If we think about somebody who has coronary artery disease or rheumatoid arthritis, we just do not have a single pill that will make that go away nor will we have one in our lifetimes. There are, however, strategies to make things far better. For the individual’s life to be as fulfilled, and as content and functional as possible, the individual — not the physician alone — needs to take ownership of what they do. Doctors can unclog an artery, but that is only a small part of the solution. Patients really need to stop smoking, they need to change their diet, they need to exercise, they need to reduce stress and become much more aware of what is happening in their body. So the responsibility is much more the patient’s than the physician’s. As physicians, we need to educate the patient so that they understand this, so that they take greater ownership of their health.


Some physicians do not always like their patients to be active participants. It takes more time. The patients have more questions. But in the end there have been a number of studies that show that when patients are active participants in their own care they do better.

DENNIS NOVACK:

The physician then takes on the role of a mentor, teacher, colleague, and partner with the patient over a period of time. Even if we have no silver bullet to cure these chronic illnesses, there are tremendous opportunities to improve the quality of life and to minimize the progression of disease and maybe even to reverse the disease. But to do so, the patient needs to be engaged.

RALPH SNYDERMAN:

This very engagement in itself can be beneficial to your health. One of the effects of having a serious illness is an increasing sense of helplessness. We interviewed Robert Jaffe, who as a physician was accustomed to being in control, not only of his own life, but also of the lives of others. Then he himself became sick with a life-threatening illness. He vividly describes his sudden feeling of powerlessness.

In the hospital before the surgery, I take off my clothes, and put them in a bag. I put on one of those ugly tattered gowns that they make you wear, where your rear end is showing. I lose all of my clothing and my jewelry and my money and my identification papers. I say goodbye to my wife, and then I lie down on the gurney and I am wheeled into the operating room.

ROBERT JAFFE:

An anesthesiologist comes to ask me what kind of drugs I would prefer for the operation. While he has this gentle Mr. Rogers voice, I also understand that he will be breathing for me, and keeping me alive during a period in which I would probably die with the amount of drugs that he must give me to prevent my body from feeling the pain of the operation. Then my arms are taped down on either side of the cold table in this crucifix position and I find myself in this incredibly dependent, vulnerable position. The IVs are put in my arm to get the fluids in and the monitors are attached to measure my oxygen level and my pulse rate. I look around and I see that I am the only person in the room without a mask. I will be the passive recipient of whatever is going to happen next... All serious illness can give people this terrible experience of powerlessness and vulnerability. You do not know when your muscles will freeze up, or when you might collapse or when the pain will strike.

When you are sick, there is a very real physiological response to feeling out of control. It is the same response that a human being, or any

TRACY GAUDET:


animal for that matter, feels when under attack. You’re in danger and your body goes into that fight-or-flight response, which we all know well. Basically the body says “something bad could happen and I need to be ready.” This triggers an entire cascade of intricate events — increased blood pressure, hormones — that put the body into a high-stress response. As we have seen, if that stress response continues over time, your immune system does not function very well and you are at an increased risk for a whole list of chronic diseases, everything from infection to back pain to migraines. And, of course, the stress will exacerbate whatever illness you are suffering from. All that comes directly from the sense of being out of control. Here is a perfect example which we see all the time. Someone has a heart attack that terrifies them. From that time on, every discomfort, whether it is a sore toe or a headache, is seen as potentially related to their heart and they panic. The doctor might smile at this but when a person has had a lifethreatening experience that has landed them in the emergency room, this is a real fear.

MIMI GUARNERI:

One of the goals of our Healing Hearts program is to give people enough confidence, enough information, so they can start to make decisions, not out of fear, but out of education. We teach patients how to listen to their hearts, to know the difference between angina and an ordinary muscle pain. If they do experience angina, they need to sit down and take a nitroglycerin pill. When you teach people, it takes away the fear. It gives them more power and control over the situation because they know how to respond. We’ve had countless people, who, before they came to see us, were going to the emergency room every week. (Think about how much that costs the medical system.) Our goal within the integrative center is to educate people so that they know how to manage what is going on — they know when they need to call their physician and when they really must go to the emergency room. We also give people a set of specific techniques to recognize the triggers, such as anger and stress, which can cause a flare-up. We teach them techniques of deep breathing that will lower their blood pressure and also lower their heart rate and put them into a state of relaxation. Longer term, they will learn to adjust their diet and not to drink caffeine which gets them all hyped up. At the same time we teach people how to exercise, do yoga, and meditate. We even teach people how to deal with their physicians — techniques like going into the interview with a written list of questions. All of these things empowers them and gives them the tools that will give them control.


(but don’t blame the victims) There is a dark side to this issue that comes from a misinterpretation of the preceding discussion. Every expert we talked to emphasized the point that, to some extent, you must become an active participant in your own health. But they also stressed the fact that it is not your fault if you get sick. Perhaps George with his heart condition, like most of us, did not take care of himself as he should, but he was also the victim of bad genetics. Some people live long and healthy lives rarely exercising and eating junk food while others who eat their spinach and run marathons are brought down by their genetics or a nasty virus. Whatever the case, feeling guilty does not help anyone cope with illness.

There is a very popular New Age mantra that negative thoughts can cause cancer — that negative thoughts lower your immune system and cause your tumor to blossom. I’m an expert on the immune system. I’ve studied it for almost 30 years. There is no solid, rigorous, scientific evidence to support this view.

JEROME GROOPMAN:

There is implicit in that claim, the pernicious message that you, the sufferer, are the cause of your illness. The reason, for example, that you got breast cancer was that you have a weak, negative, depressive character. You are flawed. The reason your leukemia is spreading is because you’re having negative thoughts. This does two things — it puts an added burden on the sufferer and it absolves the caregiver of the hard work and responsibility to try for a remission or a cure. Our health and our disease, ultimately, are bigger than we are. And while adopting all these new approaches and actively participating in our treatment, we must understand that none of us, the doctor in the white coat or the person in the hospital bed, can determine the outcome in its finality.

TRACY GAUDET:

People say to me, “I’m doing these alternative approaches. I’m doing this mindbody thing, and my cancer is still growing. So does that mean I am not doing it right?” These techniques are not about the newest magic bullet. They are not a cure. It’s not “if I just do enough imagery long enough and hard enough or enough meditation, I’ll never get sick, or I’ll cure my cancer or I will live forever.” That is not the goal. The goal is to create the optimal situation so your body can do what it can do in conjunction with the medication.


If a physician believes that the core of their work is to create an environment in which the person can take charge of their life, and achieve well-being, and if the physician practices respect and empathy — having some sense of what the patient might be feeling, this is a philosophy of interaction. Everything else is just tools: the medication, the diagnostic tests, the surgery, or even the tai chi and the acupuncture. Those are all tools and they’re good tools. But we must not make the tools the practice of medicine. The practice of medicine is the healing encounter with the patient.

ELLEN BECK:

alternative medicine that works Many people confuse the integrative medicine techniques practiced by most of the doctors we interviewed with alternative, New Age medicine — the herbs and potions and meditation and exotic remedies promoted in best-selling books and by the TV gurus. The sad fact is that many New Agers oversell their product by making outlandish claims of miracle cures. Their behavior alienates much of the scientific and medical community, some of whom dismiss the entire field as quackery. Doctor Arnold S. Relman is an articulate critic of alternative medicine and its advocates.

Until now, alternative medicine has generally been rejected by medical scientists and educators, and by most practicing physicians. The reasons are many, but the most important reason is

ARNOLD RELMAN M.D. (HARVARD MEDICAL SCHOOL):


the difference in mentality between the alternative practitioners and the medical establishment. The leaders of the establishment believe in the scientific method, and in the rule of evidence, and in the laws of physics, chemistry, and biology upon which the modern view of nature is based. Alternative practitioners either do not seem to care about science or explicitly reject its premises. Their methods are often based on notions totally at odds with science, common sense, and modern conceptions of the structure and the function of the human body. In advancing their claims, they do not appear to recognize the need for objective evidence, asserting that the intuitions and the personal beliefs of patients and healers are all that is needed to validate their methods.10 Dr. Relman is right to be skeptical. Many believers in the power of the mind claim cures for everything from toenail fungus to cancer. But these wild-eyed gurus, as Relman calls them, should not be allowed to discredit the whole mind-body field. There is, as we have seen, hard scientific evidence that some of these practices are effective. But even when the scientific data is ambiguous, many doctors who we interviewed are clear-headed enough to avoid throwing out the herbs with the bath water.

are disturbed that people choose to spend so much money on therapies that are frequently as overpriced as they are ineffective, but there is plenty of blame to go around. Doctors think nothing of prescribing drugs of limited usefulness that cost many thousands of dollars a year.

Whether they approve or not, your doctors must be nonjudgmental enough to discuss this subject with you if only because chances are your are already using some alternative therapies.

Some of these remedies could interfere with the treatment that a practitioner is prescribing. For example, from research that we have supported here at the National Institutes of Health, we know that St. John’s Wort interferes with various medications that people might be taking, such as protease inhibitors prescribed to persons with HIV. It also interferes with birth control pills. Many patients withhold the information that they are taking alternative therapies because they are afraid to tell their practitioners. We need to open those doors so that patients feel free to share this important information with their doctors.

MARGARET CHESNEY:

There is a full array of therapeutic potential beyond what we generally think of as a pill, a shot, a vaccination, or a surgical procedure. If something works and if it’s harmless it’s a reasonable thing to do if an individual is so disposed.

RALPH SNYDERMAN:

According to a recent government survey almost half of the American population regularly uses alternative and complementary interventions.11 Patients turn to alternative medicine because they are dissatisfied with the care they are getting from their doctors. Many also realize that conventional medicine does not SHELLEY ADLER: No one healing system have all the answers, particularly when is perfect. Perhaps we can enhance the it comes to treating chronic condisystems that already exist by borrowtions. Complaining to a doctor about ing concepts and strategies from other your lower back pain may elicit a healing systems. chuckle and the very unhelpful advice that you must learn to live with it. Attitudes like this are causing Americans to vote with their feet and their wallets for alternative medicine. Because most of these therapies are not covered by insurance, Americans spend more out of pocket money on alternative treatments than on conventional medicine — estimates range from 28 billion dollars to more than 50 billion dollars a year.12 Thoughtful professionals


Several studies show that certain kinds of group therapy involving women with cancer prolonged their life significantly and gave them a better quality of life. Knowing this definitely does not indicate that the therapist should tell a patient to stop chemotherapy — that they can just meditate and their cancer will go away. Absolutely not! But physicians can incorporate these approaches with modern medicine’s advances in technology, surgery, and drug therapy and put it all together so that their patients will have the best of both worlds.

ESTHER STERNBERG:

I would like to think that Western physicians are healthy skeptics, but not healthy rejecters of everything under the sun. I hope that they would be willing to help patients explore what works for them, what makes a difference, and what adds to the quality of their life.

ELLEN BECK:


A red flag goes up for me when the alternative therapist practices in a mechanistic fashion that makes the person feel as if they are a machine that is being repaired. I am much more supportive of approaches where you are learning a set of tools that improve your own quality of life. For example, with tai chi, you learn a series of exercises and movements that have been demonstrated to help with balance, flexibility, and peace of mind. Why shouldn’t we Western physicians embrace that? There is, for example, good data about using tai chi in treating the pain of shingles that we cannot effectively treat any other way. There is no medication involved, no pills, and no side effects. If tai chi can help in some way, how lovely. Why shouldn’t we allow ourselves to be supportive of someone exploring alternative therapies? Why are we so afraid?

include the influence of the caregiver-patient relationship, the setting, the environment, the patient’s beliefs and preferences. We know that all these factors have a big influence on the outcomes. Margaret Chesney is Deputy Director of the National Center for Complementary and Alternative Medicine (NCCAM) a division of the National Institutes of Health, the leading federal agency for health research.

When I was a medical student, I was taught that chiropracty was just bad — it was bad, period. It took me many years to discover that yes, there were problems but there were also some very good things that chiropracty could offer. If I had just accepted the prejudice of my training, I might never have explored where it is valuable and where it has limitations. I am generally skeptical, but I have a compassionate skepticism. I am open to the fact that certain therapeutics may actually do good without understanding how they work. But when some people say the treatment is effective because of some electromagnetic force that cannot be measured; or it’s related to a shifting of water molecules in an undefined way, that’s where I part company with them. I find pseudoscience offensive. I would just as soon say I don’t know how it works. I will accept mysticism to a degree, because we are not going to understand everything. Let’s just say, “Isn’t it wonderful that it works?”

RALPH SNYDERMAN:

Take homeopathy. There is no plausible explanation of how this could possibly work — by diluting something more and more, the medication is said to have a stronger and stronger effect. My colleagues’ eyes really glaze over when you talk about homeopathy, but there are about a hundred and forty randomized control trials, a lot of basic science that has been done to say that something is happening here. This gets into the area of what constitutes evidence. Medical researchers consider that the gold standard of evidence is the randomized, double-blind control trial. But another form of evidence is simply how well a patient is doing on a particular treatment — observational studies.

BRIAN BERMAN:

We must now take the next step and begin to try to sort out whether the good outcomes came from the actual treatments themselves or was it from what people would call the nonspecific effects of the treatments. These effects might


An important mission of the National Center for Complementary and Alternative Medicine is to support both the rigorous basic science and the clinical testing, to help both doctors and the public understand which complementary and alternative strategies are safe and which are effective.

MARGARET CHESNEY:

One project funded by this center was to study the effect of acupuncture in helping people with osteoarthritis of the knee. As with all medical testing the study used matched groups, one getting real acupuncture; a second group getting sham acupuncture — a procedure with all the trappings of the real thing but performed in such a way that the control group did not realize that they were not getting the actual treatment. Finally, there was a third group who just got educational lectures. All three groups continued taking their regular arthritis medicine.13

Our acupuncture for osteoarthritis study had all the bells and whistles of a really good clinical trial. After 26 weeks, we found that the patients in the true acupuncture group improved their physical functioning and they reported significant pain relief compared with the other two control groups. We showed, with scientific rigor, that acupuncture was safe and effective as an adjunct to regular therapy for people with osteoarthritis of the knees.

BRIAN BERMAN:


I think there are a number of complementary and alternative medical practices that sometimes challenge conventional medicine, because they don’t seem to work through the mechanisms that most of us are familiar with from a scientific perspective. This, in itself, is intriguing to scientists. The National Center for Complementary and Alternative Medicine (NCCAM) funds basic research to understand if some treatments work, why they work. With the project on osteoarthritis of the knee, the question then becomes: How did the acupuncture work? There is, of course, a traditional Chinese medical theory about acupuncture that talks about meridians in the body and balance — of energy or Qi.

MARGARET CHESNEY:

the reign of pain Each year 75 million Americans experience severe pain. Chronic pain, defined as pain lasting more than six months, afflicts 50 million Americans.14 Two-thirds of Americans will experience severe back pain during their lifetime.15 The National Institutes of Health estimated that pain costs the country over $100 billion per year in Take your fee when the medical expenses, lost wages, and lost productivity.16 patient is in pain. Fewer than one in four people suffering from Proverbs chronic pain receive adequate treatment.17

When one is living with pain on an ongoing basis it can be overwhelming and devastating. Your whole life has been disrupted, put on hold; your well-being has been taken away from you, because you are, for lack of a better word, consumed with pain.

GARY WALCO, Ph.D. (HACKENSACK UNIVERSITY MEDICAL CENTER):

Osteoarthritis is the most common form of arthritis affecting about 21 million Americans each year. It is a disease where we have a destruction of the cartilage and usually an erosion of the bone underneath it. The result is pain and difficulty in moving. There is no known cure for osteoarthritis.

BRIAN BERMAN:

NCCAM is intrigued by this but we are also armed with a new tool — functional magnetic resonance imaging (fMRI). We are funding research to look at the neurobiology of acupuncture. What is going on in the brain when a person is receiving acupuncture? With the fMRI, we are able to see and to trace pathways in the brain and explain, using standard neuroscience, how acupuncture could activate certain neural pathways that can reduce pain. When it comes to alternative therapies, as in all medicine, we must be able to separate the wheat from the chaff, what works and what does not. But research takes a long time — we will be studying acupuncture for many years. Meanwhile patients are suffering from chronic pain now and not getting satisfactory relief from conventional medical care. Patients need answers today.

BRIAN BERMAN:


If you suffer from chronic pain, you will have already discovered that standard medical procedures deal poorly with your problem. Pills are often only a temporary solution. Used long-term they can have toxic, even life-threatening, side effects. Expensive surgery often does not work. We end this chapter about treatment with the subject of chronic pain because it is in this area that the new approach to medicine that we have been discussing — whole-patient medicine with an openness to alternative treatments — shows real promise. Part of the reason that these non-conventional interventions can be so successful has to do with the very nature of pain. To you as the sufferer, nothing can seem more physical than pain. “Ouch, it is right here in my foot!” The truth is that all pain, no matter what its immediate source, is experienced in your head. As researchers are fond of saying, “The reign of pain is mainly in the brain.”

With pain the mind and the body are totally interconnected. All pain has some cognitive components. Thinking, memory, and emotion all affect how we experience pain. It is impossible to think about pain, or anything to do with preventing pain, without considering both the mind and the body. You can’t do one without the other.

LONNIE ZELTZER:


The classic proof that the brain is a key to your sensation of pain is the phantom-limb effect that some people experience after an amputation.

All of the sensation for movement, for touch, for temperature, for pressure, for itch — all of these sensations take the form of signals that used to go to a certain area of the brain. Even though you know your leg is not there anymore, you can still feel your leg moving, and you can feel itches on your leg, you can feel movement, et cetera, for about a year afterwards. If you had pain in that leg before you had the amputation, you are likely to develop what is called phantom-limb pain. This is because the templates of the old pain memory stay around in your brain even after you’ve gotten rid of the leg. It takes a while for those neural memory loops to go away.

The classic example is from the world of sports, where Donovan McNabb played the entire second half of a football game so focused on winning that he was not aware that he had just broken his ankle.

LONNIE ZELTZER:

In days gone by, people thought of pain as being a very simple system. When you were injured, the nerves from the site where you were injured would go into your spinal cord up into your brain and you would perceive it as pain. We now appreciate the pain system is phenomenally more complicated than that, and that your brain is extremely active in the process.

GARY WALCO:

Gary Walco is a specialist in pediatric pain. His patients include many children and young adults coming to him with pain from clear observable causes such as sickle-cell anemia and cancer. But Walco has also seen hundreds of young people coming to him suffering from excruciating pain with no obvious direct physical cause. Before coming to him, some of these patients were seen by many other doctors. These patients would have undergone extensive testing and, when the doctors could find no physical cause, they may have been told that their pain “was all in their heads.” Walco and other pain specialists reject this concept as meaningless since all pain is experienced in our heads. Walco suspects that these patients’ mysterious pain may have started with an external cause, such as a low-grade fever, but now the circuits indicating pain continue firing in the brain without any input from the rest of the body. They are experiencing a similar phenomenon to the neural memory loops in phantom limb pain. Whatever its source, because all pain is experienced in the brain, it can be tempered by the brain. MARGARET CHESNEY:

Most of us have experienced a phenomenon some time in our lives where we may have cut ourselves but we are so completely engrossed in a task — for example, dealing with some emergency — that it is only later that we feel the pain of the cut. That teaches us that there are cognitive powers that we all have that we can use to redirect our attention away from the pain.


It stands to reason that there may be techniques such as selfhypnosis by which we can teach people to redirect their attention so that they are able to manage their pain.

MARGARET CHESNEY:

During the making of our television series we met a remarkable young man, Matthew, an 18 year-old with cerebral palsy. All his life, Matthew has suffered from this crippling disorder of the muscles. It is not, however, a degenerative disease, and Matthew can look forward to a full life, but it will be a life filled with constant and at times excruciating pain. We filmed a fascinating sequence in which Gary Walco put Matthew into a light hypnotic state. What follows is a transcript from that scene:

GARY WALCO: Notice how it feels when the cool, dry air goes into your lungs. Just focus as you breathe. In. . . And out. . . In. . . And out.

Matt, are you in any pain or discomfort right now? MATTHEW: (in a light hypnotic state) Some — but not nearly as much as when we started.


GARY WALCO: Let’s see if we can reduce it even more. Nerves

are basically electric wires, they carry impulses they carry messages. And right where those nerves connect, I want you to see very clearly that there’s a dimmer switch. What I’d like you to do is turn the dimmer switch down. So that less of that pain message is getting through to your spinal cord. All of the tension goes out. (Waking him up) Five. Four. Three. Two. One. MATTHEW: Wow!!! GARY WALCO: The exclamation’s fine, but some details please. MATTHEW: That’s something. It definitely works. I was aware

of everything that was going on. But everything was kind of hazy, and my body was shifting its focus. As soon as I started lowering that dimmer switch, I could actually feel less and less of a reaction from those nerves, and those muscles . . .

In other sessions, Gary Walco teaches Matthew self-hypnosis to put himself into a hypnotic state to tune down his pain. He will never be pain-free, but his pain will be under control. As we have seen, just having a sense of control is a powerful weapon for anyone suffering from a chronic disease — controlling the disease rather than having the disease control his or her life. Emotions play a huge role in your experience of pain. The stomach pain from a serious cancer comes with an emotional component very different from exactly the same sensation if you have had too many pepperonis on your pizza. These two pains have very different implications for you. Naturally the cancer pain would be far more distressing which, in itself, would have the effect of amplifying the hurt that you feel. The distress that comes with your pain, however, can be alleviated through many of the techniques discussed in previous chapters. Doctor-patient interaction, the placebo effect, stress reduction, and alternative techniques can all have a huge impact on the emotional component of your pain and therefore your experience of the pain itself.

With chronic pain, a person might wake up every morning thinking “this is going be another terrible day, it’s always like this.” That in itself triggers a whole set of emotions. If the pain is associated with a disease like arthritis, there is the added emotional distress caused by a loss of function and mobility — of not being able to do daily activities they may have always enjoyed like playing golf or picking up their children. Now they are dealing with the frustration and the fear that they will be getting worse. The toll on an individual can be tremendous. They feel that there is no light at the end of the tunnel.

BRIAN BERMAN:

These things start to cycle on each other. The more depressed you are, the more you feel pain and the more you feel pain, the more depressed you become.

GARY WALCO:

GARY WALCO: Outstanding! MATTHEW: It was unbelievable!! GARY WALCO: You should know that all we did today were

the basics.



One method that Brian Berman uses to break this downward spiral is to teach patients suffering from this disease some basic yoga exercises and meditation.

It gives patients a chance to take a step back and not just to react, but to choose their pattern of reacting. Eventually, they come to realize that they may not be able to eliminate the physical pain and movement problems, but they actually can have great control over their emotions and mental suffering.

BRIAN BERMAN:

voices from the arthritis support program Imagine waking up in the morning and thinking, “today is Wednesday and I am not going to think one single negative thought.” Guess what? You’re going to be flooded with negative thoughts, because it is impossible to shut them out of your mind. This class has taught me to acknowledge all my negative thoughts and then move on. PATIENT ONE:

It is empowering for patients to realize that they don’t have to wait for that magic bullet — whether it’s an acupuncture needle or a drug — to realize that they have some control in their own hands and can to do something themselves. For many of my patients with chronic pain this is the defining moment, when they realize that they can help themselves. One effective technique used in the arthritis support group at the University of Maryland’s Kernan Hospital is called Mindfulness Meditation. This is a form of meditation that trains people to focus on the present moment — the here and now. The technique stops people from brooding about the past or having anxieties about the future.

It was very valuable for me to learn how to use meditation to process all these thoughts. Someone used the analogy that thoughts are like fish in an aquarium — like little fish swimming around in your mind. “Oh,” you think, “There goes that thought of anger. Oh, there goes that other one about anxiety and there goes the obsessing about the future.” Before you know it all those bad thoughts just leave you — they just swim away. Arthritis is unpredictable — some days, you’re great and some days, you cannot move. What this group showed me is that it’s really not worth it to spend so much energy being fearful for the future, because if you are living life based on fear, you are going to have so much more stress. And what a waste of the present.

PATIENT TWO:

It doesn’t have to be formal meditation. You don’t have to burn the incense, or wear a sari. It’s about learning how to slow down. I found that just contemplating a flower, or sitting and just taking the time to notice what’s around me whether it is ugly, good, bad, funny, or indifferent — that is what helps. It’s the whole idea of breathing, isn’t it? When you concentrate on your breathing, your breathing is right now. It is impossible to concentrate on your past breath or your future breath. When you breathe, you are right now. That’s how mindfulness meditation brings you to an awareness of your present moment. You are right here and now, the rest doesn’t matter anymore. Being in the present has been so powerful for me. I can find beauty, satisfaction, and fulfillment, now — today. I realize that I don’t have to be miserable. PATIENT THREE:



If you believe that what you are doing is going to take the pain away, it has been shown in experiments that this belief alone causes the release of chemicals in your brain that actually reduces how much pain you’re feeling.

JEROME GROOPMAN:

We can see that there is a full array of therapeutic potential beyond what we generally choose, beyond the pill or the shot or the surgical procedure. There are the standard therapeutics but there’s a heck of a lot more out there, many other strategies that work in addition to the more conventional ones.

RALPH SNYDERMAN:

There are many ways, for example, apart from drugs to reduce stress — meditation, yoga, exercise, prayer, social support, biofeedback, et cetera. But it is also important to remember that no one way works for all people. Meditation may relax me, but it may do nothing for you. You may prefer to read a book or lie on the beach or swim or jog. And no one way works for any one individual at all times in their life.

ESTHER STERNBERG:

what can you do? Here are a few more lessons that you, as a patient, can take from the previous chapters. TAKE RESPONSIBILITY

You are ultimately responsible for doing all that you can to improve and preserve your health. Make those lifestyle changes that will promote good health, getting help, advice, and support as needed. Your practitioner can provide information, medication (where appropriate) and encouragement, but it is your responsibility to follow “the program.” If there is some part of the program that does not work for you, talk with your doctor and perhaps together you can find an alternative. You have the power to maintain and improve your health. Paradoxically, this does not absolve your doctor of responsibility. The health care professional’s side of the bargain is to give you the best medical care available and to partner with you to make necessary lifestyle changes.

ELLEN BECK: It’s an empowerment philosophy — creating an environment

to help people take charge of their lives.

BE ACTIVE IN YOUR OWN CARE

ª Prepare for your visits. Ask questions.

I was called an alternative medicine physician because I teach nutrition and exercise to patients with a heart condition. Is that alternative medicine?

MIMI GUARNERI:

I was accused of wasting my time on “soft medicine.” What is the definition of soft medicine? Is it teaching someone how to eat to get proper nutrition? I don’t think that that is soft stuff. If it’s getting people back to doing some sort of movement, physical activity which affects just about everything in terms of one’s health, from diabetes to blood pressure to lipids, I don’t think that that’s soft stuff. If it’s listening to someone, and really understanding why they are stressed or depressed or worried and addressing their emotional issues, again, I don’t think that that’s soft stuff. The basis of medicine is to look at the whole person and to address all the things that are going on with that individual. I don’t define it as hard or soft. I think that it is just called medicine.

ª Do not accept treatments or lifestyle recommendations you cannot do, tolerate, or that are inconsistent with your core beliefs and values. ª Do not lie or conceal things from your doctor. If you find that you are consistently reluctant to tell your doctor the whole truth, ask yourself why: Are you afraid of your doctor? Do you feel like you have failed and are reluctant to reveal this “frailty”? Do you have a doctor that you do not trust? Partnership with your doctor means trusting your doctor enough to tell him or her of your successes and your failures, what works and what is impossibly difficult. Give your doctor feedback — without it, your doctor is “flying blind” and you will not get the kind of care that is best for you. ALTERNATIVE THERAPIES: SOME “DOS AND DON’TS”

ª If you choose to seek alternative care, avoid alternative therapies that suggest magic. Be suspicious of treatments that promise a total cure for a serious condition without risk or pain. ª Look for a doctor or clinic that blends both conventional and complementary therapies. These are often called “Integrative Medicine” centers.



ª Always tell your primary doctor what alternative therapies you are using (in fact always make sure they know about all of the treatments you are getting outside of their office). ª Refer to reliable Internet sources such as the Cochrane Collaborative, which brings together the worldwide literature on complementary, alternative medicine. [http://www.cochrane.org] This website has summaries, technical information, and a list of alternative therapies that have had scientific trials. This is “bottom-line,” very useful information. Remember that alternative therapies are generally an adjunct to conventional care and, in the case of a serious illness, are certainly not a replacement for standard medical treatment.

Readers are urged to consult the following websites for useful information and an expansion of the ideas expressed in this book. Our website [http://www.thenewmedicine.org] has a wealth of practical information as well as links to other sites. WebMD, [http://www.webmd.com] is a goldmine for reliable medical information, where you will also find resources for managing specific diseases. The website for The Bravewell Collaborative [http://www.bravewell.org] has articles and useful information supporting the practice of Integrative Medicine as well a list of health care centers across the country that practice Integrative Medicine.

FIND CARE THAT ADDRESSES THE “WHOLE PERSON”

The experience of illness is much more than having a diseased organ. It can affect every aspect of your life. Your doctor or health care provider should be sensitive to the changes you may be experiencing in all parts of your life. Whether you are suffering from a serious disease or chronic illness, such as heart disease, arthritis, or diabetes, or you just need to make some serious lifestyle changes to avert serious illness, search out doctors or clinics that care for your body, but also provide support for you personally. They should address (and help you find resources in your community to address) the larger issues that go along with serious illness and difficult lifestyle changes. These issues are often both physical and emotional. They can include learning to adjust to new physical limitations; issues of identity (“Who am I now? I used to be a healthy person, now I am a sick person.”); spiritual crises (“Why me?”); issues of failure and anger (“I just ate a quart of Rocky Road ice cream, after being so good for weeks!”)…to name but a few. Friends and family play an enormous and important role. But often, they cannot provide everything that a person requires. There are all kinds of resources out there. With a little research, you can find ones that will fit your needs — support groups, health coaches, programs to do at home, spiritual counseling, and a great many Internet chat groups devoted to providing encouragement and information for people grappling with particular diseases or issues. It is almost impossible to make difficult changes alone. Your health care professional should help and there is a community out there that can also provide enormous support.



chapter four

why don’t they? (treat us like human beings) As we have seen, there are so many excellent reasons why doctors should take the time to listen to, and to establish some rapport with their patients. It is not just a question of being nice. This rapport is essential for a proper diagnosis, necessary to establish an appropriate treatment plan and to ensure compliance. When dealing with a patient confronting a serious illness, it can make the difference between life and death. The question naturally arises: If any meaningful healing involves practicing this whole-person form of medicine, why isn’t this standard care? The answer we are often given is that medical care is in triage mode; therefore the system cannot afford empathy. A doctor’s time is too expensive. Cost is indeed a consideration, but, as we discovered, often it is not really a question of money, but more one of how medical care money is allocated. A further answer comes from the grueling process by which doctors become doctors — the medical education system. Medical students rise to the head of the class because of their technical and scientific skills, not because of their capacity for compassion. They don’t treat us like human beings because, in school and on the wards, they have never been taught how. Lurking behind the questions of costs and education is a much deeper issue — that of the medical ethos. Much of what previous chapters have discussed — the mind-body therapies, the act of listening and building a bond of trust and a partnership of healing — is not what many medical professionals consider to be their job. They will tell you that medicine is about fixing broken bodies, not about repairing broken souls. In the final analysis, medical care has become dehumanized not because of money or education. The human side of medicine is slighted for the simple reason that many doctors do not think this way. It is not in the medical culture. As the researcher Ronald Glaser told us when he was confronted with that experimental proof that a person’s mental


state influenced their immune system, “I didn’t believe it! It was just not within the framework of how I used to think about the universe.” For many medical professionals it still is not.

one – empathy is too expensive Is the lack of physician empathy really simply a question of cost? Is it really cost effective to spend only six minutes talking to a patient with a serious illness? Is it really cheaper to treat the end effects of an illness rather than to teach prevention? The obvious answers have more to do with how our medical care is paid for than any question of absolute cost. For example, hospitals get reimbursed for emergency-room visits but are virtually not reimbursed for preventive programs.

Take the case of a patient diagnosed with diabetes. A physician who takes the time to explain to a patient the terrible side effects of not controlling their diabetes — heart disease, blindness, the loss of limbs — who instructs them on what they must do to prevent these side effects, gets almost no reimbursement. But if that person goes on to destroy their kidneys by not controlling their blood sugar, physicians and hospitals are very well paid for providing hemodialysis or performing a kidney transplant. This makes no sense whatsoever.

RALPH SNYDERMAN:

It makes even less sense when we see the numbers. The annual current cost of treating the almost 400,000 Americans with kidney failure is $18 billion.18 It requires knowledge and discipline to control one’s blood sugar, but many of the end effects of this disease could be prevented if patients with diabetes received effective support and continuous follow-up along the lines of the Integrative Medicine model of the Healthy Hearts program described in chapter three. The shocking fact is that 60 percent of all newly diagnosed diabetics get no follow-up care at all. When complications develop, the result is enormous suffering for patients and an enormous expense for the medical system. Hospitals get little reimbursement for the $70 per hour that it costs for a session with a diabetes educator but do get paid for the $10,000 to $30,000 it can cost to amputate someone’s right leg because this person was never properly supported in how to control his or her blood sugar.19 When we asked one doctor to explain this illogical system he blamed the insurance companies and then, tellingly, asked to remain anonymous because, “I need to pay the mortgage.”


The reason is clear. If I am running an insurance company, I am not interested in paying for something now that will show a benefit 20 years from now. We know that we can prevent heart disease by working with adolescents, getting them to change their diet and exercise patterns but that will not have any payback until they are 60 years old. Insurance companies are businesses and they want an immediate return on their shareholders’ investment. They are focused on things that will show a benefit in 12 months, not in 12 years. So prevention goes out the window.

ANONYMOUS DOCTOR:

In countries with a single-payer system such as Canada or England, there would be a clear economic advantage to institute a policy of preventative medicine. It would directly save the entire system large sums of money. And yet, even in these countries, with some exceptions, the fee schedule does not reflect prevention as a priority. In this respect, these countries are bad but the fragmented American system is worse.

Here is a specific example we found at the Duke Medical Center. Asthma is a chronic disease that we see frequently in our emergency room. But this is not a disease that you can deal with effectively or humanely if you wait until the person comes in short of breath, turning blue, and wheezing. I was interested in trying to understand why we were getting repeated emergency room visits from individuals having asthma attacks.

RALPH SNYDERMAN:

We did a demographic study of Durham County, Wake Forest, and Chapel Hill, and we discovered that almost all these admissions were coming from two small neighborhoods in the most impoverished part of Durham. These individuals came from the areas of the community that have the least access to the health care system, the least access to information about what could be done to make things better for them. The result: children with no health care, living in poor environments with pollution and other factors that worsen their asthma have repeated attacks that are so bad that they must come to the emergency room. This is not the way we ought to be practicing health care. This is not compassionate, it doesn’t make any medical sense, and it doesn’t make any economic sense. And, as medical care lurches from one short-term patch to another, the entire system is going bankrupt.

The health care system costs the country more than $1.7 trillion. One-seventh of our economy is expended on health care; almost three-quarters of those expenditures are for treatment of chronic disease, often late stage chronic disease where people are already suffering from the end effects of their disease, and the chances for reversibility are low. Spending, as we do, more than one trillion dollars on late-stage diseases is not cost-effective.

RALPH SNYDERMAN:


And now we have 80 million aging baby boomers entering the system looking for answers to their problems. So we know that we need to change how we deliver health care.

BRIAN BERMAN:

But we need to have the will, the energy, and ultimately the political support to change things.

RALPH SNYDERMAN:

Part of the high cost of medicine is due to the high cost of hi-tech. Frequently people are given elaborate tests for conditions that could be easily diagnosed if the doctor would ask a few simple questions. In part, due to the Byzantine payment structure of medicine — where nobody pays for medical care yet everyone ends up paying — many of these tests are dispensed without any thought about the expense. The same is true for treatments. Expensive drugs and procedures are prescribed when inexpensive, alternative therapies could be more effective.

Our health care system will pay for medications; it will pay for emergency-room visits, for procedures and hospitalization. Under the present system, we have a huge population of people who are stressed, whose bodies are breaking down, and who have lots of symptoms, including chronic pain. Patients go from doctor to doctor trying to find out what is wrong with them. They are getting all of these expensive tests, X-rays and MRIs, and may still end up in the hospital.

LONNIE ZELTZER:

It can be highly cost-effective to pay for noninvasive, stress-reducing, preventative measures. Meditation or yoga classes, a once-a-week massage, are inexpensive items compared with an emergency room visit or a hospitalization, but because our health care system operates with a biomedical model, we don’t yet see the value of paying for these low-tech, low-cost mind-body interventions. An intellectual shift needs to take place so that doctors can see patients holistically. But we also need financial and systemic shifts, in terms of how these problems are addressed, and how they are paid for.

GARY WALCO:

Right now, we have a very expensive disease-care system, not a health care system. And we don’t have as our mission allowing everyone in the country a chance to live the fullest and healthiest lives they can. In the end we have to look at the goals of medicine. Along with that pursuit of happiness, people also have a right to be healthy.

ROBERT JAFFE:


It is not just patients who are unhappy with the medical system. Doctors too are suffering from the growing financial and work pressure.

Medicine has undergone a sea change in the last decades. The HMOs and the insurance industry are now in control. The profession used to have a high satisfaction rate but now survey after survey shows doctor burnout and dissatisfaction.

ARTHUR KLEINMAN:

Because of the corporate control of health care, many physicians, particularly family physicians and other primary care physicians, are running at such a pace that they no longer feel they are giving good care. If they really want to be a good doctor to each person, they end up staying at their clinics until late at night to finish their notes and make their call-backs. In the current managed-care system, the rule is faster, faster, faster. With all the complex constant regulation, filling out this form, phoning here, doing follow-ups there, doctors start to feel like little hamsters running in a cage and they burn out. We see excellent, caring physicians giving up and choosing other careers.

ELLEN BECK:

Until we can solve this time crunch, until we recognize at all levels that people and their lives don’t fit into 15 minute time slots, we will see the humanistic practice of medicine continue to be eroded. It has become very hard to practice compassionate medicine in America. The system is broken. We went into medicine because we care about people, because we want to give support to human beings, but all those things that we love and are passionate about are getting chipped away. And then there are so many boundaries and restrictions. It beats you down and you lose your soul.

TRACY GAUDET:

two – the basic training of medical students When our students enter medical school, they are starry-eyed, they’re romantic, and they are optimistic. They appear to be entering medicine for all the right reasons, really wanting to improve the lives of others. There is a transformation that occurs in medical school that hardens many medical students.

RALPH SNYDERMAN:

Our students come in really wanting to help people. It may sound trite but I think it’s actually true: most of our students come in ready to express themselves as caring individuals. Too often much of that gets beaten out of them in medical school.

DENNIS NOVACK:

Medical school tries to cram every possible piece of information in the students’ heads. But still, many subjects like nutrition and mind-body issues are just not covered. The excuse that many schools give is that there is more important information for students to learn. Yes, you need to know the Krebs Cycle, and you need to learn about mitochondria and about all the bugs that cause infection. Of course you need to know all of that but I realize now, after 20 years in practice, that you also need to know how to talk to someone. You need to know the language to use when you are delivering scary information. You need to learn how to motivate someone.

MIMI GUARNERI:

I have been a medical educator for three decades. I will be honest with you. The human side of medical education has been a failure. After the first two years of school, when they are taught theory but have very little contact with patients, the students then go onto the wards where they’re trained by the residents. Residents in hospitals are basically survivors. I was there; I know what it means to be a survivor. You spend all these hours during the day and night overwhelmed by the number of patients, and running around between tasks.

ARTHUR KLEINMAN:

There is a “treat ’em and street ’em” philosophy on the wards. The wards can be so busy and chaotic that the residents want just to treat the disease, get the patients better, and send them out quickly because every patient under their care means a lot more work.

DENNIS NOVACK:

In effect, these medical students are being given a course by the residents in survival skills — shown how to cut corners. And as they learn to survive they are taught to forget their humanity. The process of going through medical school is a process of disabling doctors.

ARTHUR KLEINMAN:



If it were only possible to take these young people just as they are when they enter medical school and, in some magical way, put all that knowledge, all those techniques, all that skill into their minds without changing them in any way, they would be the kind of physicians that we all dream of having with us when we are in need.

RACHEL REMEN:

In medical school students are trained to be technicians and experts. They get approval for their intellect; they don’t get as much approval for their heart, intuition, or spiritual perspective. They are taught that things expressed in numbers are truer than things that can only be expressed in words or things that cannot be easily expressed at all but only experienced. By focusing so narrowly on the science and the expertise of medicine, they end up giving away a lot of their power to make a difference in people’s lives.

We teach the students an appreciation for the importance of communication, of expressing their caring, of spending time with patients and getting to know their questions and concerns, of helping patients to heal.

DENNIS NOVACK:

The process of becoming a physician does transform you. You see things that no one else sees except maybe in battle. You hear things that no one else hears. Patients will tell you things they have never told anybody else and sometimes they are horrible, upsetting things. At the end of the day, you can feel spent and worn out. But you can also feel privileged and invigorated. We want to support that. I teach the students that, as long as they have a decent knowledge base, they don’t have to know everything, but they must know what they know and what they don’t know and how to ask for help. If they are compassionate, thorough, conscientious, and humble they will be good doctors.

ELLEN BECK:

There is some hope in this area. Now all students taking their National Medical Board exams must be tested in their communication skills along with subjects like anatomy and biochemistry. We filmed Dennis Novack supervising harrowing sessions in which young medical students must face very skillful actors and actresses, yelling, arguing and crying very authentic tears. Dr. Novack’s stated goal is to “immunize” first and second-year students against the negative training they will get on the wards.



three – the culture of medicine

Science and technology have changed all that. Now we can see how the nervous system extends from the brain to every organ and down to individual cells. But the old thinking, that emotions and feelings are exclusively the dominion of psychiatry, persists. It is deeply ingrained in the medical culture that medical doctors should deal only with the body — that a patient’s feelings or mental state is just not their department. Doctor Robert Baratz, President of the National Council Against Health Fraud, is representative of the many medical professionals who remain contemptuous about using mind-body therapies like yoga to help treat a serious illness. He commented, “It gives some people peace of mind or makes them feel better but there is no medical or plausible mechanism by which it affects the disease process.”20 The second part of this statement is debatable; the first part is astonishing. Is not an important object of any treatment to give people peace of mind?

Scientific, biologically based medicine has been enormously successful at curing illness in the last century. By looking at the body as a physical machine, researchers have developed the tools to cure many of the ancient scourges of humankind. Smallpox, which periodically wiped out one tenth of the population of a country, has been eliminated from the face of the earth. Tuberculosis, another major killer, and many other infectious diseases can now be easily cured with a course of drugs. Worn-out joints, heart valves even whole organs are regularly replaced. We owe much to scientific biomedicine. We live longer and fuller lives with all those pills and stents and titanium hips. Traditional medicine handled mental illness by dividing us into two separate and supposedly independent systems — mind and body. For problems of the body you were sent to a body doctor who worked on your physical ailments. For problems of the mind, you were sent to a head doctor who talked to you and got you to deal with your thoughts and emotions. Doctors did not deal with a link between mind and body — emotions and illness — because this connection was invisible to scientists. As Esther Sternberg explains it, “They could not understand in scientific terms how something like a thought (we don’t even know what a thought is) could affect something as concrete as health.” In the past, researchers did not yet have the means to detect the hormones and electrical signals by which the mind interacts with the functioning of the body. They considered the influence of emotions to be outside the realm of physical medicine.


I once attended a debate in which a strong believer in the biomedical model was attacking the whole concept of alternative medicine. At one point in the debate, he was pounding his fist on the table and saying, “It is not the job of the doctor to make the patient feel better!” I was stunned. He was saying that it was not his job to pay attention to a person’s mental or emotional wellbeing. How can we separate the patient’s body from the rest of who they are — their emotions, their relationships, and even their spirituality? Although I know there are many doctors who make that separation, it is inconceivable for me to treat a patient in that way.

TRACY GAUDET:

I am a wonderful example of being shortsighted in this respect. I love science and I love technology and it can be used for great good. But from the patient’s point of view it is unsatisfying if all they get from a physician is a prescription and a procedure and they don’t get emotion and they don’t have contact and they don’t feel the partnership. It is hollow and it is empty.

JEROME GROOPMAN:


chapter five

to heal

The second group, matched to the first in age and social circumstance, was under relatively low stress. The Glasers discovered that the skin wound took measurably longer to heal in the high-stressed group — a full nine days longer. They repeated the experiment with students on summer vacation and the same students who were given a wound three days before a final examination. Again the wounds healed significantly faster when the students were under lower stress.

You cut yourself, you get a wound and The wound that bleedeth inward is the body repairs itself — in other words, most dangerous. the wound heals. It may seem like a John Lyly (1554-1606) English Dramatist completely physical process but perhaps the most surprising revelation of our television series was seeing direct scientific evidence of how a person’s mental state has a direct impact on the healing of a skin wound.

wound healing The repair of your cut is an amazing choreography of biology. The first responders at the site of your wound are cytokine cells, which cause inflammation and kill any microbial invaders. Other cells are then sent to the site to clear away the debris and yet other cells go to work to repair the area. Every step of this complex process must turn on and off at the right time. If the killer cells linger too long, for example, they will begin to destroy healthy tissue. This whole process is regulated by the hormones of your immune system, which in turn, as we have seen, is influenced by your emotional state, particularly your level of stress. This raises an interesting question: Could your level of stress actually determine how fast you heal? Ron and Jan Glaser designed an ingenious experiment.

In our first wound study, we used a biopsy punch instrument to create a skin wound about the size of a pencil eraser. We photographed a standard-size dot next to the wound and then we photographed the wound each day as it shrank and healed. Comparing the dot to the wound, we could measure exactly how fast the wound was healing.

stressed

unstressed

These simple experiments have profound implications for your medical care. If the tiny wound given by the experimenters heals significantly faster when you are under lower stress, it stands to reason that the will heal significantly faster if you can keep your level of stress low before and after the surgery.

A large body of literature suggests that when people are more anxious or stressed before surgery, the post-surgical outcomes are a lot poorer. Patients will need more pain medication and they will suffer more post-surgical infections. Unfortunately, I am not aware that hospital practices have changed substantially even given this research.

JAN KIECOLT-GLASER:

JAN KIECOLT-GLASER:

The Glasers gave these small wounds to two different groups. The first group was caregivers to a parent or spouse with advanced Alzheimer’s disease. These people were under high and chronic stress.


Indeed, virtually nothing can be more stressful than going into a hospital for surgery. Hospitals are noisy, chaotic, terrifying places. Sometimes it seems as if there is a conspiracy afoot among the staff to maximize the patient’s stress level.

Look at one of the things that we routinely do preceding a surgery. Just when the patient is feeling at their most vulnerable waiting for their surgery, the doctor, the person in a position of power, comes in their white coat and

TRACY GAUDET:


spells out every one of the possible bad things that can happen because of the surgery. That is the consent form that we must all sign. Talk about communication and the power of the spoken word! The last thing we should be doing immediately preceding the surgery is implanting those concepts into the patient’s mind, because we know that they have a powerful impact on the patient’s psychology and even on the potential outcome of the surgery. For any planned surgery, you could get an informed consent days or weeks before the surgery, but for logistical reasons that is not the way we do it. Instead we use the power of the spoken word to implant in peoples’ minds the most terrible of outcomes — paralysis, loss of a limb, even death, and then you say, “Now, let’s go have the surgery.” It’s crazy. Hundreds of studies have proven that very small, highly doable interventions can positively influence the outcome of a major surgery. Here, in the cold, clinical words of a science magazine are the astounding results of one study performed several decades ago.

View Through Window Influences Recovery From Surgery Records on recovery after cholecystectomy of patients in a suburban Pennsylvania hospital between 1972 and 1981 were examined to determine whether assignment to a room with a window view of a natural setting might have restorative influences. Twentythree surgical patients assigned to

rooms with windows looking out on a natural scene had shorter postoperative hospital stays, received fewer negative evaluative comments in nurses’ notes, and took fewer potent analgesics than 23 matched patients in similar rooms with windows facing a brick building wall.21

such as a staff member meeting you to guide you through the admission procedure. The hospital has family rooms where family members can sleep if necessary.22

Simple things will help patients feel more relaxed, procedures such as having a doctor or nurse spend time talking with patients telling them what to expect, and making sure their questions are answered.

JAN KIECOLT-GLASER:

It is logical. If you have information, if you are an informed patient knowing what you will be going through, you will be less concerned, a little less scared, as opposed to going through a procedure where you have no idea what to expect. It doesn’t take a rocket scientist to figure out how this might work.

RONALD GLASER:

We have already seen how giving patients a sense of control and lowering their stress can have an enormous impact on the process of healing, but we have also seen how these important aspects of care are not treated as a priority by the medical establishment. At some fundamental level even the science of mind-body healing as demonstrated by the Glasers is not accepted by medical administrators. There is, however, one powerful group that is very concerned with a patient’s mental state and how it affects their healing — the people who have to foot the bill. We met with Deborah Schwab, an executive with Blue Shield of California, a huge insurance company, in their corporate headquarters in a skyscraper in downtown San Francisco.

Many studies in the clinical literature have looked at how stress can affect healing. On a very common-sense level, I can see how the more stressed a patient is, the more slowly they will heal and the more the patient may be susceptible to complications.

DEBORAH SCHWAB:

Not all of us can be promised a sylvan view out of our hospital window, but a great number of simple changes could make your hospital visit less stressful. These include subdued lighting, the use of earphones instead of blaring patients’ television sets, the staff wearing silent pagers instead of everyone being subjected to the public address system with its constant and urgent announcements. Hospitals such as Woodwinds in Minnesota are models of what can be done. A public hospital, it is completely organized to provide “the optimal atmosphere for healing and recovery” with not only soothing architecture and a low noise environment but little details



I was intrigued by these studies, and having been trained as a nurse, I was a little more open to these kinds of interventions. It’s something that nurses focus on — the caring aspect, the nurturing side of the health care system. But I’ve also had a scientific training, and the scientist in me said, “Show me the proof.” Blue Shield could not subscribe to this concept, and could not base a whole program on it, unless there were some measurable results. The program that Deborah Schwab was investigating was for Blue Shield to supply patients about to go in for major surgery with a special CD or cassette tape to listen to. The audio program employed a wellknown technique, similar to meditation, called guided imagery.

The benefits were startling to us from a financial perspective. The tapes retail for $17.95. The average total billings for members who used guided imagery before the hysterectomy operation was $2,000 less per patient, compared with those who did not use the guided imagery.

DEBORAH SCHWAB:

The savings came from the decreased use of medication including pain medicine, and slightly shorter average hospital stays. Blue Shield and many other insurance companies across the country now routinely supply patients about to go in for major surgery of all kinds with these audio programs.

VOICE ON A GUIDED IMAGERY TAPE:

You find yourself in an operating room — completely relaxed. You step outside of yourself and watch, as the team competently and skillfully prepares for the operation. You see them at work and you feel a sense of calmness and trust...

Guided imagery is a mind-body technique that focuses people’s thinking on a positive outcome for the surgical procedure. The closest analogy I can use is the mental rehearsal techniques that Olympic athletes use before a competition to improve their performance.

DEBORAH SCHWAB:

Blue Shield decided to test the efficacy of these guided imagery audio programs on 900 patients about to go for a hysterectomy; then the company followed up with a survey of the reactions from the patients.

In spite of some initial doubts that this was a little bit flaky, a little bit too “California” for some people, it didn’t turn out to be that way at all. We got hundreds of completely unsolicited phone calls and letters from our members thanking us for having this program. They described some very heartwrenching experiences about feeling extremely anxious, unable to cope with the waiting period prior to their surgery. Then, after listening to the tape or CD, they were able to focus their energy on preparing themselves for this surgical procedure and felt much more confident.

DEBORAH SCHWAB:

This talk of “focusing energy” may sound very New Agey and “flaky,” as Deborah Schwab put it. One can think of many uncomplimentary adjectives to describe executives of large insurance companies, but “flaky” is not one of them. They have their eye firmly on the bottom line — and the bottom line of this trial was a revelation for even the most skeptical.


Huge savings from a $17.95 tape… Imagine how this financial saving (and an equally huge saving in human suffering) could be amplified in the thousands of hospital procedures done every day if the staff would spend a bit of extra time reassuring patients and if hospital procedures could be slightly rearranged to make patients feel more at ease. It is not surprising that many of the doctors with whom we talked in the course of making this series ended the interview shaking their heads in frustration.

I am infuriated that this is not the standard of care. Every single patient going to the operating room should be informed that the mind has a huge impact on the body and there are ways that you can take advantage of that. But it is not being done.

TRACY GAUDET:

If we could get the same results from these mind-body approaches that we get from a pill, it would be mainstream in a heartbeat. But because it lies outside the paradigm of what we think of as medicine there is this preconception that these things are not real, that they are not powerful. We have a long way to go.


healing from illness The second meaning of the word “healing” refers to how a doctor can help you deal with a serious, chronic or terminal illness. Healing in this sense means coming to terms with your illness.

One of the hospitals in my town ran a series of ads about the great care they offer. They showed pictures of smiling middle-aged people, coming in for hip or knee replacements, and then they would show these same people playing tennis and handball, riding horses, or skydiving. These ads promoted the illusion that you can go into a hospital, have a body part replaced and then go back and be just the same as you were before you got sick, or even better. It is as if we are all built in a Ford factory and you can have a piece replaced, and everything goes back to normal again.

ROBERT JAFFE:

The healing process doesn’t work like that and medicine doesn’t work like that. Illness is a transformative event and, even if everything works out perfectly to the doctor’s desire, every patient comes out of the experience a different person. I once had a patient with pneumonia who had to be in the hospital for a few days. She had an uneventful recovery but after she went home she became depressed. I couldn’t understand why her illness did that to her. I do now. She was a very healthy, independent person, and this was the first time that she came face-to-face with the fragility of health and needed to depend on other people to stay alive. So even patients who are cured may experience a new sense of vulnerability about their lives. They may feel suddenly inadequate, dislocated, not the people they once were.

DENNIS NOVACK:

Look at the example of someone who is recovering from cancer. After the conventional treatment some doctors will say, “We finished your chemotherapy. You’re done. Hurray, you’re alive. Go live your life!” But this patient still has to deal with the impact of that disease on their life.

TRACY GAUDET:

is so much we can do as physicians through our words and through our listening, and that is what healing is all about. Even when our patients are dying, we can help them come to some completion in their lives. They may have unfinished business, they may have a lot left over that they regret. We can listen to these things and we can counsel them, not only help them cope but perhaps inspire them. In doing this we are doing a tremendous service to our patients. We are helping them heal even though we can’t cure them. We lead privileged lives as doctors. Our role is to enter a person’s life when a serious illness forces them to come to grips with tragedy, with loss, with pain and suffering. Most of the time the doctor can do something to alleviate some of the hurt, but even when you can’t stop the suffering you can help in dealing with the meaning of the illness. You can be a guide to people coming to terms with their catastrophe.

ARTHUR KLEINMAN:

When I first became ill, I thought it was the end of my life and of all my dreams. And everyone around me also thought it was the end of any hope of my having a meaningful life. The reality was that it was just the beginning of everything. What I discovered was that because of this, the life that I have lived is far larger than the life I had dreamed of living. I don’t think that I would have anything important to share with you if I hadn’t developed an incurable illness 52 years ago.

RACHEL REMEN:

There are certain things that I will never have because of my disease, important things, but other doors I didn’t even know existed opened for me, and because of this, they opened for a lot of other people as well. There’s a kind of a courage that grows in you with illness. I am not afraid of what most people are afraid of. And this lack of fear has allowed me to accompany people as they discover who they are and what they’re made of and to be there with them in profound ways that I would never have been able to do if my own illness hadn’t made me ready to do it.

There are many times, unfortunately, when we can’t cure people. There are one hundred million people in this country today who have chronic illnesses, who are either stable or getting worse. But we can still help those people. We can help them cope. We can help them see new possibilities for their lives, even when they are struggling with a terrible chronic illness. We can help patients see the good possibilities for the future. We can help them overcome some of the demons that continue to haunt them throughout their illness. There

DENNIS NOVACK:



the power of hope REYNOLDS PRICE: I notified all (my friends about my serious illness) and I thought I could sense their hope like a firm wind at my back. It felt like the pressure of transmitted courage, sent from as far off as Britain and Africa; and that was the thing I needed most at the time. The music of others was the first big weapon in my battery of healing, my own campaign to outlast the tumor. 23

When I was a resident, I was overseeing this particular intern in our family medicine department who had as a patient an elderly woman with lung cancer. I was with him when he said to her bluntly, “You know of course that you’re dying.” You could just see her face and her whole demeanor change. She looked at him with a fury and said, “You have no right to do that to a person!” And she was right. Basically what he had said took away all her hope. Underneath it all, she knew that she was dying, everybody knew it, but it was those words… All she wanted was to keep the hope alive, the hope that was letting her get out of bed in the morning. That scene has stuck with me all these years.

There is a biology of hope; it has an effect on your body. It can have a very powerful effect on how much pain you have, on your respiration, your heart, your muscle tone. There’s a whole series of studies that demonstrate this fact.

JEROME GROOPMAN:

BRIAN BERMAN:

Every patient comes to a doctor primarily looking for one thing, and that is hope. Hope is really central in the experience of illness and in the path to healing. People often confuse hope with optimism. An optimist says “everything is going to turn out just fine.” Well, you know, we’re adults and we know that things often don’t turn out just fine. In fact they turn out very poorly.

JEROME GROOPMAN:

Hope is different. Hope is clear-eyed. It sees all the reality that you face, all the obstacles, all the problems, all the potential for failure. But through that, it sees as well a possible path to a better future. It’s not guaranteed, but it’s possible. Healing means that you’re made whole again, that you emerge from this experience of illness not just with your tumor shrunk, which is certainly a major goal, but with you being restored as a person.

Hope is realistic because it sees medicine for what it is, as an uncertain art. Nothing is absolutely determined in biology, because there is a great variability from individual to individual and treatment to treatment and how that treatment works in any particular individual. Even some of the most dire diseases occasionally can remit. In the end, hope is the key to healing. It means that you are made whole again, that you emerge from this experience of illness having been restored as a person. This fact needs to be taught and honored and reinforced. It can’t just be glib lip service. The doctor just can’t say, “Sure, yeah, the patient’s emotions are important, “Let’s make an appointment with the social worker.” Social workers are great; social workers have been cleaning up the messes that doctors like myself have made all through our careers. We must stop cutting ourselves off from our patients’ emotions. They become an essential part of our work when we realize that we don’t just do science. Medicine is also an art.

In the case of chronic diseases, the individual’s sense of how it’s going to turn out is very often a major factor in terms of how in fact it does turn out. If an individual feels helpless or hopeless, they are much less likely to be cured or show a major improvement in their condition than somebody who is optimistic and tends to think that they will be able to get through this.

RALPH SNYDERMAN:



In the foreword to this book, the actress Dana Reeve (wife of the late Christopher Reeve who has, herself, just been diagnosed with lung cancer) explains that illness, alas, is a great teacher. As she discovered, there is a huge difference between knowing something intellectually and knowing it in your heart. These are the cruel lessons of experience. This is especially the case when doctors themselves get a serious illness and are given a taste of their own Western medicine with all its shortcomings. We end this chapter with one of these stories. Chronic illness is a horrible experience, and it seems ridiculous to point to the positive aspects of the ordeal. In the first-person story that follows, however, we see a doctor coming to terms with his disease. It not only changed his life but it also gave him a very clear-eyed view of what must change in the practice of medicine. His experience with illness — his realization of the real needs of a patient — encapsulates much of what we learned in the previous chapters. The vast technology available to modern Western medicine is life-saving and wonderful, but it is not enough.

when doctors get sick: Robert Jaffe’s story

My name is Robert Jaffe. I was a family physician working full-time until 1997 but my story begins way back when I was in medical school. I woke up one morning and saw that there was blood in my urine. I was sent to the hospital and was told to take off my clothes, and put on a gown, and lie on a table, just as everyone else does. I was having an intravenous polygram done, an IDP, where they inject dye into your vein and can then get X-rays of your kidney and how it functions. They took the X-rays and the technician, as usual, didn’t say anything to me, because they’re not allowed to say anything until the radiologist has looked at the film. I put on my clothes, and my short white doctor’s coat, and went to see the radiologist, who was just starting to put up the films. I told him I wanted to find out the results of the test. The radiologist, seeing me in my white coat, assumed that I was talking about one of my patients. He told me this was an interesting case and brought in the other medical students and residents and started giving a little lecture on polycystic kidney disease, and chronic renal failure, and how serious the disease was in this patient. I was in a state of shock. Up to this moment, I’d had no idea that there was anything at all wrong with me.



I told the radiologist that he was looking at my X-rays, and I didn’t want him making a teaching case out of me, I just wanted to talk to him. He apologized, and brought me back to his office. I sat and looked at him and said, “What does this all mean? What am I supposed to do?” His response was to hand me the X-ray films and to tell me to get rid of them, to bury them some place. He said he would remove all records of this visit. He then advised me to go out and buy some good life insurance and disability insurance because, once my diagnosis was known, nobody would ever insure me again. I felt that I had just been given a death sentence. Here I was in my last year of medical school, off to start a new career, the world was my oyster, and this diagnosis came on me like a thunderstorm. My reaction was to go into complete denial about being sick. I moved to the West Coast and started a family practice. I did well, until seven years ago when I noticed that my blood creatinine level was rising. That is a measure of how well your kidney is functioning. Once it starts to go up, you’ve already lost 70 percent of your kidney function. I continued to work, but by the beginning of 1997, I could see that I only had a few months left before I was going to be very sick. I had to face the fact that I was becoming a patient. One night I had a very vivid dream. I was walking inside a pyramid looking at the hieroglyphics on the wall. At the end of the hall, I got into an elevator; it started moving horizontally. Instead of going up, I was speeding quickly in a straight line. I was feeling very dizzy and when I woke up, my head was spinning and I was nauseous. I started throwing up and having hiccups that couldn’t stop. I knew that these were all symptoms of end-stage renal failure, my blood was becoming toxic and I would need dialysis right away. My body wasn’t working anymore. I had lost control. The illusion that you have everything under control is typical of a doctor but, as a patient, I discovered very early on that I didn’t have everything under control. I found myself with the catheter in my neck, hooked up to the dialysis machine cleaning out my body. This was not the way I had planned it. I never intended to be dependent on a machine in order to stay alive. My idea was that I was going to get a kidney transplant and go right back to work. That was my first lesson of being ill — learning how to live life with the understanding


that you have very little control over circumstances, over your own body, over what’s going to happen tomorrow. Robert Jaffe had a kidney transplant, but he suffered many complications that required a quick succession of debilitating surgeries.

Previous to this illness, I had never been inside a hospital as a patient, I had never had any surgery. The worst thing that had happened to me was when I was eight years old and was bitten by a dog and had to have stitches in a finger. I went from a physician who had never been a patient to someone who had had nine operations in six months. I still wasn’t doing very well and was facing a much longer period of recovery. I was much less sure of when, or if, I’d ever return to work again. It was as if I had entered into another world, and was never coming back. The surgeries and the complications lasted seven years. I was on this roller coaster, and I didn’t know where it was going to drop me off, or indeed if it would ever stop. It was a frightening and intense experience. I am much, much better now, but I have been through this transformative experience of being a patient, and then returning to my normal life.

the tribe of illness In our society, we all want to be in Disneyland or in some soft-drink commercial where we all look 20 years old and are playing beach volleyball. None of us wants to be sick, or to have a physical deformity. When you become ill, particularly when you become visibly ill, when you have a cane, or are in a wheelchair, people tend to shy away from you, perhaps because you remind them that this may be their future. Even though 75 percent of us will develop a chronic illness, and we all die, we try to avoid any reminders of those facts. I discovered that there was a small group of people who had faced illnesses themselves, often without ever telling me, and who, when I got sick, became much closer to me. I call this the illness connection. As I moved through my succession of treatments, I found that there are dialysis tribes, transplant tribes, and amputation tribes, people strongly bonded together by their similar experiences. They are a tremendous support to each other because they too have had this traumatic experience. They really do know what you are feeling.


an awakening

hospitals

If one of Carl Jung’s students would tell him that they had inherited a large sum of money, Jung would just shrug. But if another student came to him saying something terrible like, “I’ve just been diagnosed with cancer,” he would embrace them and tell them how much they are going to learn from the experience. This is a dark way of looking at things, but the truth is that these are the moments when you learn how to live.

I certainly learned a lot about hospitals from the patient’s point of view. Here I was stuck in a room for many days unable to move, staring at the ceiling, forced to eat the same awful food day after day. I don’t think that the staff has any idea what it’s like. Some people in intensive care units become psychotic after a while from this sensory deprivation, from just being in the same place all the time. Hospitals should have a director of ambience to change the lights and make the room look more like a bedroom or a living room. Get a more comfortable couch for the guests to sit on and vary the pictures on the walls. They could call in a hairstylist, get a manicurist, or have a masseuse see patients. None of those things are very expensive but they are just not on the radar of the nurses and the physicians. They tend to focus only on the patient’s vital signs and urine output, the chemistries and lab tests — the physical being.

Strangely enough, it really can be a blessing to have something horrible happen to you, because if you can cope and get through it, it strengthens your ability to make better use of the rest of your life. When you realize that you don’t really have control over your life, that all life is just a fleeting moment, then you have arrived at a place where you can live your life more fully. Illness gave me a much better appreciation of my marriage, my family, and my friendships. Before I got sick I tended to take people close to me for granted. I now appreciate that during the dialysis and after the surgeries, it was they who kept me alive. My illness fundamentally changed the way that I saw life. Like all of us, I used to carry on in that happy state of denial, refusing to accept the simple fact that I was mortal. I used to work eighty or a hundred hours a week. Illness turned my priorities upside down. Now I just want to be with my kids and my family, to garden, to watch the seasons go by. I spend more time just walking my dog, and looking at trees, and talking to people, reading books to my kids, stroking their heads, realizing that this too will not last very long. I also found that few things could upset me anymore. One night when I was at the Kidney Center on the dialysis machine, a truck driver came in and asked if anyone owned a blue Volvo. I raised my hand and he said, “Well, I don’t think you own one anymore.” He apologized, and told me that he had hit an ice patch, and had slid right into the first car parked by the side of the road. My poor car, which before this didn’t have a nick on it, now looked like an accordion. I shrugged my shoulders and caught a ride home.

There was little attention paid to how I was feeling emotionally. The nurses were better at it. Some would sit and just hold my hand and let me cry but they were the exception. This is not because they are bad people; hospitals are in the process of laying off nursing staff. The nurses have a higher and higher ratio of patients to care for and less time to be able just to sit and talk and listen. The physicians were worse. At first, each morning all the transplant physicians with my nephrologist and the team would come into my room. This army of white coats would smile and greet me, and tell me how good I looked, and how everything was working out well. But when things started to turn sour and it became clear that the transplant wasn’t taking, the interaction with the staff changed. They started holding meetings in the hall to discuss how I was doing, rather than having the discussions in the room. They were talking about the potential of the surgery failing, or other complications I was developing, and the risks of things that they might have to do, or the risks of things that might happen if they didn’t do something. I could hear these muffled voices on the other side of the door but their actual interaction with me was much shorter. I began to feel more and more abandoned because I wasn’t recovering. Doctors like to be successful and failure is not on their agenda. When things happen that can’t be fixed, when things go wrong, there is the fear, the sadness, and the defensiveness — all ending in less contact with the patient, with me.



relearning the art of medicine I have always seen myself as a good physician, someone who had empathy, care, and compassion for my patients. When they were going through difficult times, I thought that I did a good job listening and giving them support. It wasn’t until I had my own illness that I realized how big an impact illness has on someone’s life. We physicians come in with those long, white coats and stethoscopes and hammers, exuding confidence and professionalism. In truth, we are in this strange position. There are the occasional episodes, where you can take out an appendix, or you can control someone’s pain, or you can help them when they’re depressed, but, in reality, what we are able to do is fairly limited. I began to realize that a lot of what I do as a physician is to listen to what my patients have to say, to honor and encourage them to keep on with their lives and to do the best they can. So often you are in this big rush, and yet you are dealing with people who have the highest needs. I learned to be more human with patients. You see patients who are at death’s door, or people struggling with a big loss, and you are rushing off to see someone who has come in with a cold. Time is indeed a challenge, but the changes in modern medicine don’t have to be all bad. You can correspond by e-mail. You can have a medical assistant e-mail folks, or call them up just to check in and see how they’re doing. If you see someone who has a lot on their plate, you can make another appointment with them when you have time to talk about their problems. Physicians do not spend enough time listening to what the patients say, or really understanding why they have come to them.

All through my experience I kept thinking of something that happened many years ago while I was an intern training in a hospital. There was a patient with cancer on the ward who was having intractable back pain and the medications weren’t helping. Here was this man just groaning and groaning and groaning and the resident was totally frustrated because he just could not figure out how to control this man’s pain. An older physician was on call with him. It was the middle of the night and the resident had to wake him up. The doctor went into the patient’s room and stayed for an hour and a half. He then went to the nurses’ station and wrote and wrote pages in the patient’s chart. Then he went back to sleep. The resident, wondering what had happened, went into the patient’s room to find him sound asleep. He looked at the notes in the chart and was astounded to see, on page after page, the story of this man’s life. It told of his heroism during World War II and the work he had done in the union after the war. The doctor had just listened to this man, really listened. Here was someone in a lot of pain, about to die, crying out to be heard, to be recognized. The act of listening to this person, and honoring his life helped him to cope with whatever he was facing. It gave him strength, it gave him dignity, and it helped him to heal.

I have also learned a lot about how much courage it takes to be a patient. We are the astronauts being shot off on a voyage into outer space from which we might never return. I learned about facing my fears and I learned about hope. I have learned that there is something about faith and hope that can have a direct impact on the ability to heal, and to recover and move on with your life. I’ve always been optimistic, I don’t know why. It may just be some neurotransmitter aberration that I have, but the role of hope was very important in my recovery. And anyone who was able to give me a boost in hope — the patients who shared information about new experimental therapies or drugs, physicians who told me that there was something that they might be able to do, even if there was a slim chance that it would work out — were a great help to me. Because if you enter a state of despair your chance of recovery drops precipitously. 106 | the new medicine


chapter six

the future of medical care Everyone agrees that the financial structure of the health care system in this country is in a mess. Employer-based health insurance is unraveling, Medicaid is under severe pressure, and vast rising Medicare costs loom on the horizon.

We have this strange quilt of government and private systems that do not work well together. We are a downstream health care system in which we are busy trying to rescue people who are drowning in a river but we never look upstream to find out why they’re falling in, or why they can’t swim, or where the fence is broken. We spend far too much money taking care of people in the last days of their lives and far too little in preventing illnesses from happening.

In the next five years we are going to see substantial improvements in the health care system. One reason, ironically, is that, as it is now structured, medicine is on the verge of collapse. It is far too expensive, it is far too inefficient, and it is far too unsatisfying to individuals who need access to the system.

RALPH SNYDERMAN:

I can even see the bright side of the collapse of the insurance system with people paying for a greater portion of their health care with co-pays and so forth. Because real money is coming out of their pockets, the general public is becoming more aware that the system just is not working for them. They are saying in effect, “I’m not being treated like a human being. I don’t accept this in other aspects of my life so I refuse to accept this from the medical system.” The needs are so great and the desire for change is becoming so great that we will reach a crystallization point where people will say, “Let’s do something serious about it. It is about time we addressed the fundamental structure of the practice of medicine. Let’s make it better.”

ROBERT JAFFE:

All of this is going to get very dire very soon with those 80 million baby boomers pushing their way into Medicare. Our health care system isn’t prepared for that big bulge in our population, as it heads our way. Many changes will have to be made, but I’m optimistic. This generation isn’t going to go quietly into their older years, and into a nursing home to disappear. They will complain loudly if they don’t like what they’re getting.

future doctors Medical schools are changing now. They are starting to have classes in what’s called “medical narrative,” where students can learn not about a patient’s disease, but about the person and their story. They learn not to interrupt the patient after 18 seconds. There is also a push in medical schools to admit people with more than just a science background. They are admitting students with communication skills, who have compassion and empathy, all the qualities that will make for wonderful physicians. Medicine is not only about ordering tests. The challenge is to teach young physicians never to forget that they are dealing with human beings.

MIMI GUARNERI:

Drugs are not going to solve this problem, and physical appliances are not going to solve this problem — though they will help. What is going to be needed is a sense that medicine shares interests with complementary fields. Physicians have natural allies in social workers, in religionists, in physical therapists, in occupational therapists, in a variety of other fields around medicine that can share some of the responsibility for dealing with illness as well as disease. We are going to see a much more comprehensive medicine in the future, one that will figure out ways to empower the physician and the patient to deal with all of these many dimensions of care.

ARTHUR KLEINMAN:



More and more students around the country are working both with actors role-playing patients and real patients early in their medical school training.

DENNIS NOVACK:

We are teaching more advanced skills, such as the ability to give bad news or to confront an alcoholic with his diagnosis, or the skills of working with an angry patient or family member. There are skills that you can define, teach, and then give feedback to the students on how they’re doing. All these skills enable the student to connect with their patients when they go into practice. Along with a mastery of biochemistry and anatomy, the human skills of medical students are starting to be given real value. One leading medical school, McGill University, has instituted an annual cash award to “a medical resident who demonstrates outstanding qualities of compassion, understanding, and acceptance of responsibility for ongoing care.” 24

What I hope for in the future of medicine is that every physician, at every stage of training and in every specialty, reconnect with why they became a physician in the first place, which was to make a difference, and to allow their humanity to enter into the encounter with the patient.

ELLEN BECK:

Students coming into medical school these days know they are not going to get rich by being doctors. Yes, they will have a comfortable lifestyle, but they’ll never be fabulously wealthy. So they choose medicine not just as a job but as a calling. They are far more idealistic and altruistic and I think that this is going to have positive effects for the future of patient care.

DENNIS NOVACK:

whole person medicine Medicine today is in a very unsettled period. The system is good at applying the wonderful advances in science but it is not conducive to addressing the emotional and spiritual dimension of illness. This, I think, is why so many people are defecting from “traditional” doctors like me and looking for “alternative” healers. I think that traditional medicine needs to reclaim its role to address not only the body but also the spirit. It can only do that if doctors begin to respect and to understand the importance of the spiritual dimension of the experience of illness. And it can do that if it teaches young physicians, and older doctors like me, that emotions are as central to a patient’s needs as any other dimension of their problem.

JEROME GROOPMAN:


We have put all of our hope and our money into technology and science and we have forgotten about the human aspect of medicine. The fact is that medicine is an art, not just a science. The science of medicine is about reducing things to what is common to all people who are sick. But every single situation is unique because we can never completely predict the individual’s capacity to heal. Science can do a tremendous amount, but it can never explain everything. It can never understand the mystery of the human body and the human soul and the way those two interact. For me, this is part of the joy of being a physician — to be in partnership with that mystery.

TRACY GAUDET:

My hope for the future of medicine is that we won’t create a separate discipline called Integrative Medicine because all of medicine will have been integrated seamlessly across the board. All doctors will realize that the power of the mind can be a huge ally. Instead of ignoring it, we can harness it to promote health. I think a lot of what gives doctors a sense of great accomplishment is the sense that they have entered a domain where they not only can help people but, in a world that has become increasingly commoditized and industrialized, they can be decent and kind.

ARTHUR KLEINMAN:

Physicians have this opportunity to engage with patients in an experience from which both doctor and patient have a sense of reaffirmed humanity. Understanding that life is important not just for the repairing of our broken bones and the fixing of our broken hearts, but because we deal with what is really serious, what is most at stake for us, what matters most in living. Two people have the rare privilege of coming together in the context of that interaction. I think this is a fantastic way of remaking our world, of making the world more human. The most common answer that the students give us after completing our course, the one thought that they will be taking home with them: “I can be a good doctor and still live from the heart.”

RACHEL REMEN:


biographies of the interviewees SHELLEY R. ADLER, Ph.D.

Associate Professor of Medical Anthropology, Department of Family and Community Medicine, University of California, San Francisco. Director of the Qualitative Methods Core, Osher Center for Integrative Medicine. Dr. Adler conducts research on ethnomedicine, integrative medicine, and the placebo/nocebo phenomena. She also studies patient-physician communication and quality of life at the end of life among underserved women with cancer. Dr. Adler is involved with the redesign of medical curricula to be more inclusive of relevant social scientific issues, such as cross-cultural medicine and communication. ELLEN BECK, M.D.

Co-founder and Director, UC San Diego Student-Run Free Clinic Project Clinical Professor, Department of Family and Preventive Medicine, University of California, San Diego School of Medicine. Since 1997, in partnership with community programs dedicated to social justice, the UCSD Student-Run Free Clinic Project unites healers, including volunteers, community members, and students from medicine, dentistry, mental health, pharmacy, social work, law, nursing, Oriental medicine, fine arts, education, and local communities to provide free, respectful, humanistic care to the underserved, those without access to care. This program won the 2002 Norman Cousins Award for a medical education program emphasizing relation-centered care. Dr. Beck also directs a national faculty development program addressing the health needs of the underserved and a year-long Fellowship in Underserved Medicine. A family physician, she is a mentor, advisor, and teacher to medical students, patients, and faculty and has taught Stress Management and Integrative approaches to medical students for many years. She is a mother of three teenage daughters. http://cybermed.ucsd.edu/freeclinic/index.html BRIAN BERMAN, M.D.

Founder and director of the University of Maryland Center for Integrative Medicine (CFIM). Professor of Family Medicine, he has trained extensively in acupuncture, homeopathy, and other CAM therapeutic approaches. Recently, he published a landmark study of the effectiveness of acupuncture for osteoarthritis of the knee, which found that acupuncture reduces pain and improves functionality. He is currently the principal investigator of two NIH funded centers studying traditional Chinese medicine, one of which is an international center with colleagues in Hong Kong. He was the first chair of the Consortium of Academic Health Centers for Integrative Medicine, and served on the


Institute of Medicine panel on complementary medicine. Winner of the 2005 Bravewell Leadership Award in Integrative Medicine, which “pays tribute to an outstanding person who is transforming health care through integrative medicine.” MARGARET CHESNEY, Ph.D.

Deputy Director, National Center for Complementary and Alternative Medicine (NCCAM), NIH. Prior to joining NCCAM, Dr. Chesney was professor of medicine and epidemiology at the School of Medicine, University of California, San Francisco (UCSF), where she was co-director of the Center for AIDS Prevention Studies and director of the behavioral medicine and epidemiology core of the UCSF Center for AIDS Research. Most recently, she was also a senior visiting scientist in the NIH Office of Women’s Health, in the Office of the Director. Throughout her career, Dr. Chesney has designed and conducted original research on the relationship between behavior and chronic illness, and on behavioral factors in clinical trials, including issues of recruitment, adherence, and retention. She also worked on the development and evaluation of psychosocial and behavioral interventions for health promotion, illness prevention, and treatment. MARY AMANDA DEW, Ph.D.

University of Pittsburgh, professor of psychiatry, psychology and epidemiology. She studies the emotional and behavioral aspects of illness particularly focusing on patient’s recovery from transplant surgery. She led a study that showed that serious mental health problems were prevalent after transplant, especially during the first year, and these problems served as predictors of additional medical complications in the later years after the transplant. JANICE KIECOLT-GLASER, Ph.D.

S. Robert Davis Chair of Medicine, Ohio State University College of Medicine; Professor of Psychiatry and Psychology, and Director of the Division of Health Psychology in the Department of Psychiatry. She is a leader in the area of psychoneuroimmunology; she has authored more than 175 articles, chapters, and books, most in collaboration with Dr. Ronald Glaser. Their studies have demonstrated important health consequences of stress, including slower wound healing and impaired vaccine responses in older adults; more recently they have also shown that chronic stress substantially accelerates age-related changes in IL-6, a cytokine that has been linked to some cancers, cardiovascular disease, type II diabetes, osteoporosis, arthritis, and frailty and function decline. In addition, their work has focused on the ways in which personal relationships influence immune and endocrine function, and health.


RONALD GLASER, Ph.D.

Professor of Molecular Virology, Immunology and Medical Genetics at The Ohio State University College of Medicine, and Director of the Institute for Behavioral Medicine Research. He has published over 272 articles and chapters in the area of viral oncology and in the area of stress and immune function (most in collaboration with his wife, Janice Kiecolt-Glaser). He is past President (2003–2004) of the Psychoneuroimmunology Research Society (PNIRS). TRACY W. GAUDET, M.D.

Director of the Duke Center for Integrative Medicine (www.dcim.org), and assistant professor of obstetrics and gynecology at Duke University Medical Center. Under her leadership, the Center has pioneered the development of Personalized Healthcare Planning, as well as initiatives in research and medical student and resident education. She co-founded the Consortium of Academic Health Centers for Integrative Medicine and serves on the Steering, Executive, and Policy Committees, and chaired the Membership Committee from 2002–2004. Prior to coming to Duke, Dr. Gaudet was the founding Executive Director of the University of Arizona Program in Integrative Medicine, helping to design the country’s first comprehensive curriculum in this new field. She is the author of Consciously Female, a book on integrative medicine and women’s health, and is currently working on a follow-up entitled Consciously Pregnant. JEROME GROOPMAN, M.D.

Dr. Groopman holds the Dina and Raphael Recanati Chair of Medicine at the Harvard Medical School and is Chief of Experimental Medicine at the Beth Israel Deaconess Medical Center. His research has focused on the basic mechanisms of cancer and AIDS. He did seminal work on identifying growth factors which may restore the depressed immune systems of AIDS patients and on treatment for AIDS-related neoplasms, particularly Kaposi’s sarcoma and lymphoma. He performed the first clinical trials utilizing recombinant colony stimulating factors and erythropoietin to augment blood cell production in immunodeficient HIV-infected patients. He has been a major participant in the development of many AIDS-related therapies including AZT, ddI, ddC, d4T, 3TC and most recently the protease inhibitors. His basic laboratory research involves understanding how blood cells grow and communicate (“signal transduction”), and how viruses cause immune deficiency and cancer. He is a staff writer in medicine and biology for The New Yorker and the author of three popular books, The Measure of Our Days, Second Opinions, and The Anatomy of Hope.


ERMINIA GUARNERI, M.D., FACC

Medical Director and Founder of the Scripps Center for Integrative Medicine Board Certified in Internal Medicine, Cardiovascular Diseases, Nuclear Cardiology and Holistic Medicine. Dr. Guarneri completed her internship and residency in Internal Medicine at the New York Hospital and Sloan Kettering Memorial Hospital, Cornell University, where she served as assistant chief resident. She received training in general cardiology at New York University (NYU) and completed two additional years of training in Interventional Cardiology, one at NYU and the other at Scripps Clinic. Dr. Guarneri’s areas of interest include all aspects of cardiovascular disease prevention with an emphasis on advanced lipid management, lifestyle change and early detection using state of the art imaging modalities. She is a member of the American College of Cardiology, Alpha Omega Alpha, the American Medical Women’s Association and a Diplomat of American Holistic Medical Association. Author of the book: The Heart Speaks: A Cardiologist Reveals the Secret Language of Healing. ROBERT JAFFE, M.D.

Robert Jaffe is a board certified family physician living in Seattle. He has been a practicing clinician, on the clinical faculty at the University of Washington, Department of Family Medicine and a health activist in state and national tobacco control efforts. In 1997, he left his clinical practice due to chronic kidney disease. Since his successful transplant in 2004, he has been writing a book and lecturing about healing and patient perspectives on health care. He currently serves as a consumer representative on the board of directors of Washington State High-risk Insurance Pool, a nonprofit program offering health benefits to those rejected by private insurance for preexisting conditions. MAEVE KINKEAD

Maeve Kinkead received her B.A. and M.A. from Harvard University. She attended The London Academy of Music and Dramatic Art and has performed in theatre, film, and television. In 1992 she won an Emmy Award for her role as Vanessa Chamberlain on CBS TV’s Guiding Light. She is a published writer and is currently a student in the Warren Wilson College MFA Program for writers. ARTHUR KLEINMAN, M.D.

Esther and Sidney Rabb Professor and Chair, Department of Anthropology, Harvard University. Professor of Medical Anthropology in Social Medicine and Professor of Psychiatry, Harvard Medical School. He was elected to the Institute of Medicine of the National Academies in 1983 and to the American Academy of Arts and Sciences in 1993. Since 1968, Kleinman has conducted research in


Chinese society. He is the author of six books, including The Illness Narratives and What Really Matters: Living a Moral Life Amidst Uncertainty and Danger. From 1991 to 2000 he chaired Harvard’s Department of Social Medicine. He is presently the chair of the Department of Anthropology. He studies and writes about the social roots of disease, the doctor-patient relationship, culture and health care, and the moral basis of medical practice. DR. WILLIAM B. MALARKEY, M.D.

Associate Director, Center for Stress and Wound Healing, Professor of Internal Medicine, Medical Biochemistry, Molecular Virology, Immunology, Medical Genetics, and Psychiatry, Ohio State University. Dr. Malarkey works with Ron Glaser and Janice Kiecolt-Glaser, studying the effects of stress on wound healing. DENNIS NOVACK, M.D.

Associate Dean, Clinical Skills and Clinical Skills Assessment, Drexel University College of Medicine Dr. Novack is an expert in the subject of doctor-patient communication and is in charge of instructing the medical students at Drexel in these skills. RACHEL NAOMI REMEN, M.D.

Clinical Professor of Family and Community Medicine at UCSF School of Medicine and the Founder and Director of the Institute for the Study of Health and Illness at Commonweal. She is one of the pioneers of Holistic and Integrative Medicine and the Founder and Director of the Healer’s Art curriculum for medical students, which is now being taught in more than 1/3 of medical schools nationwide. She is co-founder and medical director of the Commonweal Cancer Help Program, one of the first support groups for cancer patients in America, featured in the groundbreaking 1993 Bill Moyer’s PBS series Healing and the Mind. Dr. Remen’s best-selling books Kitchen Table Wisdom: Stories that Heal and My Grandfather’s Blessings: Stories of Strength, Refuge and Belonging have been published in 18 languages. http://www.rachelremen.com DEBORAH SCHWAB R.N., M.S.

Blue Shield of California, Director of New Product Development. Founded in 1939, Blue Shield of California is one of the state’s leading health care companies. Headquartered in San Francisco, the not-for-profit corporation has about 2.3 million members, 4,000 employees and more than 20 office locations throughout California. For more information, visit the company’s Web site at www.mylifepath.com.


RALPH SNYDERMAN, M.D.

1989 to June 2004 he served as Chancellor for Health Affairs and Executive Dean of the School of Medicine at Duke University, where he was also President and Chief Executive Officer of the Duke University Health System (DUHS). He remains at Duke as Chancellor Emeritus and is continuing his work in prospective health care. He is an immunologist whose research contributed to the understanding of the precise mechanisms of how white blood cells respond to chemical signals to mediate host defense or tissue damage. Winner of the 2003 Bravewell Leadership Award. ESTHER STERNBERG, M.D.

Received her M.D. degree and trained in rheumatology at McGill University, Montreal, Canada, and was on the faculty at Washington University, St. Louis, MO, before joining the National Institutes of Health in 1986. Dr. Sternberg is internationally recognized for her discoveries in brain-immune interactions and the effects of the brain’s stress response on health: the science of the mind-body interaction. In addition to numerous scientific publications in leading scientific journals, she has authored the popular book The Balance Within: The Science Connecting Health and Emotions. Dr. Sternberg lectures nationally and internationally to both lay and scientific audiences, including appearances at the Smithsonian Institution (Washington, D.C.) and the Nobel Forum (Karolinska Institute, Stockholm). GARY WALCO, PH.D.

Director, The David Center for Children’s Pain and Palliative Care, Hackensack University Medical Center; Professor of Pediatrics, University of Medicine and Dentistry of New Jersey, New Jersey Medical School. Founder and Chair of the Special Interest Group on Pain in Infants, Children, and Adolescents of the American Pain Society; 2003 Jeffrey Lawson Award for Advocacy in Children’s Pain Relief, American Pain Society. LONNIE ZELTZER, M.D.

Professor, UCLA Departments of Pediatrics, Anesthesiology, and Psychiatry and Biobehavioral Sciences, at the David Geffen School of Medicine, UCLA; Director, UCLA Pediatric Pain Program at UCLA Mattel Children’s Hospital. An expert in cancer and also hospice/palliative care, Dr. Zeltzer runs the Pediatric Pain program at UCLA. She uses imagery, hypnosis, and other alternative therapies to treat chronic pain in children. She studies the development of chronic pain, mind-body-pain connections, and the impact of complementary therapies on chronic pain. She has completed studies of hypnotherapy, acupuncture, yoga, and meditation, and is part of a NIH-funded national research consortium studying the late effects of childhood cancer. biographies of the interviewees | 117

end notes 1. Ivan Illich, Limits to Medicine: Medical Nemesis: The Expropriation of Health (New York, 1999) 2. Reynolds Price, A Whole New Life (New York, 1994), 13–14. 3. Sigmund Freud, quoted in Arthur Koestler, The Ghost in the Machine (New York, 1967), 267. 4. Roy Porter, Blood and Guts: A Short History of Medicine (New York, 2002), 45. 5. Wall Street Journal, Oct. 10, 2005, d1. See also Dr. Robert S. Epstein et al. “Impact of Medication Adherence on Hospitalization Risk and Healthcare Cost,” Medical Care, June 2005. 6. Wilma Scholte op Reimer et al., “Smoking behavior in European patients with established coronary heart disease,” European Heart Journal 27:1 (2005): 35–41, originally published online at http://eurheartj.oxfordjournals.org/cgi/content/abstract/27/1/35 7. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Division of Kidney, Urologic, and Hematologic Diseases, U.S. Renal Data System Annual Data Report 2005 (2005). 8. Centers for Disease Control, National Center for Health Statistics, 2003. 9. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Division of Kidney, Urologic, and Hematologic Diseases, U.S. Renal Data System Annual Data Report 2001 (2001). 10. Arnold Relman, “A Trip to Stonesville,” The New Republic, December 14, 1998 (review essay examining books by Andrew Weil). Abridged version available online at http://www.councilscienceeditors.org/members/securedDocuments/v22n4p121-123.pdf 11. Herbert Benson et al.,”Brain Check” Newsweek, September 27, 2004. 12. See the website maintained by the National Center for Complementary and Alternative Medicine at the website of the National Institutes of Health: http://nccam.nih.gov/news/camstats.html. See also “When Trust in Doctors Erodes, Other Treatments Fill the Void,” The New York Times, Feb. 3, 2006, a20 13. Brian M. Berman et al., “Effectiveness of Acupuncture as Adjunctive Therapy in Osteoarthritis of the Knee: A Randomized, Controlled Trial,” Annals of Internal Medicine 141:12 (December 21, 2004), 901–910. See also http://www.annals.org/cgi/content/abstract/141/12/901 14. National Pain Survey, conducted for Ortho-McNeil Pharmaceutical (1999). See http://www.chiro.org/LINKS/FULL/1999_National_Pain_Survey.html 15. C. E. Dionne, “Low Back Pain,” in I. K. Crombie, P. R. Croft, S. J. Linton, et al., eds., Epidemiology of Pain (Seattle, WA: IASP Press, 1999). 16. National Institutes of Health, “The NIH Guide: New Directions in Pain Research I” (Washington, D.C.: Government Printing Office, 1998). See also the related announcement of grants: http://grants.nih.gov/grants/guide/pa-files/PA-98-102.html 17. “Chronic Pain in America: Roadblocks to Relief,” study conducted for The American Pain Society, The American Academy of Pain Medicine, and Janssen Pharmaceutical by Roper Search Worldwide, Inc., January 1999. See the webpage at the American Pain Society website: http://209.61.175.160/whatsnew/toc_road.htm 18. U.S. Renal Data System Annual Data Report 2001, cited in note 9. 19. Ian Urbina, “In the Treatment of Diabetes, Success Often Does Not Pay,” New York Times, January 11, 2006. 20. Carol E. Lee, “Physical Culture: Chronically Ill Patients Turn to Yoga for Relief,” New York Times, December 15, 2005. 21. Roger S. Ulrich, “View Through a Window May Influence Recovery from Surgery,” Science 224:4647 (April 27, 1984): 420–421. 22. For more information on Woodwinds see their website: http://www.woodwinds.org. 23. Price, A Whole New Life, cited in note 2. 24. Dr. Ezra Lozinski Prize in Clinical Medicine, McGill University, Faculty of Medicine
