This fall, our series at Cornell University Press on the Culture and Politics of Health Care Work published a remarkable new book. It’s entitled My Imaginary Illness: A Journey Into Uncertainty and Prejudice in Medical Diagnosis and its written by political philosopher and professor at the University of Calgary in Canada Chloe G. K. Atkins. The book is part of a collection we are doing at the Press which is called How Patients Think. The series was inspired by Jerome Groopman’s book, How Doctors Think. Each book in the series begins with a short contextual commentary written by a medical professional – in this case by Bonnie Blair O’Connor, a medical educator and ethnographer. The book then moves to the patient narrative and concludes with a clinical commentary written by a physician or nurse. The commentary is intended to ask what we can learn from the patient’s story and consider how clinicians can change their practice and thus improve the patient experience and patient care. In this case, Brian Hodges, M.D a Professor of Psychiatry at the University of Toronto and director of U of T’s the Wilson Centre for Research in Education has written a brilliant clinical reflection about Atkins’ experience.
To say that the the story Atkins tells is important is an understatement. It is one that is too often repeated in a medical culture fixated on rigid categories of diagnosis in which doctors – and nurses – are infected with a very particular disease (or as Atkins would put it, prejudice). The physician is expected – and expects him or herself – to come up with an iron-clad “accurate” diagnosis of the patient’s problem, treat the problem, and fix it – hopefully forever. If the physician cannot come up with a diagnosis – and quickly – the search for blame begins. Rather than blame themselves, the state of science, or simply the human condition; rather than realizing that, in fact, blame is not the appropriate category to apply to the experience, physicians quickly blame the patient. If the physician can’t find a clear organic cause for the illness, then it must be in the patient’s head. He – or in this case, she – is nuts, has conversion hysteria – maybe the patient or someone in the patient’s family is even deliberately making themselves sick to get attention, as in Munchausen’s Syndrome or Munchausen’s by proxy. Rather than compassion and empathy, terms like “secondary gain,” “wasting time and resources,” “faking it,” are bandied about.
In this case, when she was only 20, Chloe Atkins developed mysterious neurological symptoms. She had serious motor problems, at times couldn’t walk, at times could not even move. Maybe she had a stroke. Maybe she had this, or that. Maybe, maybe, maybe… But no matter how many tests or interventions were delivered, Atkins would recover, slightly, then relapse, then get better, then sicker. No one could figure it out. So, doctors decided it was all in her head. The diagnosis became conversion hysteria and that’s what went into the chart. And the chart was no longer a constructive medical chronicle used to convey relevant clinical information, but a rather what O’Connor correctly dubs “a rap sheet” that contained the allegation and evidence and the patient was, in effect, rendered a medical criminal. Even when she was lying in bed, unable to move a muscle and on a ventilator, doctors and nurses turned against Atkins. (For those nurses who read this, read carefully, because yes indeed, nurses appear little better in this account than MD.s) Even if she were mentally ill – which she was not – one would imagine that caregivers would deliver compassionate care (after all a mental illness is every bit as much of an illness as a physical one). One would be wrong. People who were immediately sympathetic, suddenly became detached and judgmental when they read the “rap sheet’ and discovered that it was “all in her head.” What made things even worse for Atkins was the fact that she wasn’t the picture perfect patient (is there such a thing?) with a loving family at the bedside waiting to fulfill her every need. She was estranged from her parents, which simply confirmed the “rap sheet”" conclusion that she was a head case and deserved no sympathy whatsoever . As Hodges so eloquently puts it, instead of exhibiting curiosity about the patient, they became angry — and,as time went on and she refused to get well, even angrier — at the patient.
And so it went for 20 agonizing years. With the exception of the odd doctor or nurse, the majority of so-called caregivers who Atkins encountered, were either blaming, or downright hostile. What is even more tragic, from my point of view, is that RNs exhibited as much callousness as physicians. (And, least you be tempted, if you’re a nurse, to dismiss this as atypical, recall all the books and chronicles of patient experiences like Ann Fadiman’s brilliant If The Spirit Catches You and You Fall Down, or renderings of Helen Haskell’s experience of the death of her son Lewis Blackman. Invariably nurses are as susceptible to the disease of anger at the patient as are MDs.)
Finally Atkins found a physician who was willing to believe the patient and decided that uncommon form of Myasthnia Gravis was the working diagnosis. Atkins was treated with MG medication and is a great deal better. But her diagnosis is still contested and she fears that, if she falls into the hands of the wrong doctor, she will once again be stigmatized as making it all up. For fortunately, her current physician has a concept of what I call a “good enough diagnosis,” – one that works, one that helps the patient but one that may not conform to the strict medical rendering of a disease as it has been defined by the medical gods who dictate the precise parameters of a condition and who seem to think they own not only the diagnosis but the patient’s experience.
In his conclusion, Brian Hodges asks doctors and nurses to think about why they so often react to complex patients with anger rather than curiosity and to ask themselves, “am I part of the solution or part of the problem?’
Since publishing this book a few short months ago, I have encountered more and more patients who are having or have had this experience. A friend in California is suffering from unexplained and debilitating dizziness. Doctors examine, probe, investigate. They can find “nothing” physical, so as my friend’s life becomes more and more constricted, they declare that it must be all in her head — which, by the way, it probably is, but not they way they mean. Another friend’s 24-year-old daughter has mysterious stomach problems — can eat barely a thing, is constantly constipated. More probing, more head scratching, until finally, violating every patient privacy rule on the book, the physician calls the mother (without the daughter’s permission) and asks her about her daughter’s mental status. The mother is shocked. Finally, he effectively fires the patient by telling her there is nothing he can do for her –maybe she should go to a psychiatrist. Finally, another friend, an internist who teaches residents at a teaching hospital here in Boston confided that when he and other physicians and physicians-in-training see a chart the size of the one Atkins had produced, they inwardly groan. Patients with charts like telephone books are referred to as “frequent flyers,” and the object of the exericse is to try to get rid of the patient like a hot-potato, as quickly as possible. In our increasingly Midas muffler shop like, industrial medical system, the idea is throughput, getting the patient in and out not exploring and sticking with it over the long-term.
When I read Chloe Atkins book in manuscript, I was convinced it had to be published. I have never had a similar experience — at least not one so serious and persistent. But I have, like the people above, encountered doctors who couldn’t figure it all out and who decided I was to blame. I sympathize with their dilemma, as does Brian Hodges in his clinical reflection. I can only imagine how hard it must be to see a parade of patients, day after day, year after year, all suffering from something, all wanting to know why, all pleading to be fixed. With our obsessive fixation and promotion of medical miracles and those who perform them, our society and our medical system often make it impossible for doctors to arrive at a “good enough diagnosis,” and thus we inadvertently encourage the kind of callousness and arrogance Atkins and so many other patients encounter. It’s the opposite side of the miraculous coin. And it needs to be changed.
I hope everyone who reads this will read this book and more important, that they will reflect on Hodges’ question and suggestions. Medical professionals need to be able to express and explore their anger and frustration. It shouldn’t be turned inward, and it certainly shouldn’t be turned toward the patient. It should lead instead to the curiousity and compassion for the human condition that Hodges prescribes. Ultimately, that is the only Rx that will actually work.
Most of us don’t think of our families in terms of teamwork or team leadership and membership. I know I certainly don’t. I think a lot about teams when it comes to colleagues with whom I work. I also think a lot about teams in my professional research. In fact, I am writing a new book entitled Come Fly With Me, with two colleagues — a pilot and medical educator — about team work training in aviation and its lessons for patient safety. In aviation, with the development of Crew Resource Management (CRM) and Threat and Error Management (TEM) the emphasis is on sharing critical information with all of those on the crew — no matter what their position in the hierarchy — in order to prevent terrible accidents. When I work with colleagues or observe the status quo in health care, I am constantly thinking about information sharing — and its lack — and patient safety. I was struck the other day, however, about the application of the team work model to everyday life — life outside of the professional arena, life inside the personal one.
Let me tell you why?
I was in New York, sharing a small hotel room with my eldest daughter, 26, and my husband. We had come from Boston where we live and were spending a few days between Christmas and New Year in the Big Apple. My daughter was flying back to her home in El Salvador and was repacking her bags to leave on an early morning flight the next day. While my husband was out doing errands, my daughter was sorting through her luggage and discovered that the glass on a framed painting she’d brought with her had broken. It had, in fact, snapped into two large pieces — one with a particularly jagged and dangerous point. She lifted out the piece with the rather frightening point, handed it to me and asked me to put it in the garbage. I did. Point up. I then put the less lethal portion of glass into another waste basket. We both knew the glass was in the garbage and we clearly assumed we were the only people with the need to know. It’s not that we decided not to tell my husband and her father. It’s that we didn’t think of it at all. Not for a second.
She finished packing, my husband Steve returned to the room and we all went out to dinner and to a play. We got back and went to sleep, setting the alarm for 3:30AM, as she was going to be picked up to go to the airport at 3:45. I woke up dutifully and kissed her goodbye and my husband took her and her luggage down to the waiting taxi. I blissfully went back to sleep thinking all was well. Which it was. Almost.
When I woke up at about 9, my husband was awake and I asked if my daughter had gotten off okay. She had. She was fine. He wasn’t. What had happened, I inquired?
Turns out, that bleary eyed at 3:30AM, he’d swept something into the garbage and discovered — that is his hand discovered in the most painful way — the jagged piece of glass I’d left sticking right out of the garbage. He’d cut his thumb badly. Not wanting to alarm my daughter, he’d gone into the bathroom to stem the profuse bleeding with some kleenex and then stuffed his hand into a glove so she wouldn’t see it. The person on the desk in the wee morning hours gave him some bandages and he –somewhat uncomfortably — went back to sleep.
You can imagine what I thought when I heard this story and the names I called myself. Not only was my husband’s thumb badly cut,but I was horrified to think that he could have had an even more serious injury if his hand had hit the glass a little lower and he cut the vein in his wrist.
What occurred to me after my initial reaction of guilt and horror, was that I had failed to apply the rules of teamwork, safety, and information sharing that I study to my own family. When my daughter handed me that piece of glass and I put it away, I didn’t think, “you have to warn Steve about this.” Alex and I knew about it and that was, from my own blinkered point of view, all that needed to happen. Not only did I not share crucial information, I didn’t manage a potential threat effectively at all. I deposited that large piece of glass in the garbage point up, when what I should have done is taken it to housekeeping and asked them to safely get rid of it. The threat I had to manage wasn’t only a threat to us, but to any housekeeper who would have to clean up after us. For safety purposes, she was also a member of the team.
Of course, the first thing I did after looking at my poor husband’s thumb was take the two pieces of glass to the housekeeper with firm warnings to be really careful and many apologies for asking her to throw out the broken glass.
But this is how accidents happen. It’s because we aren’t considering who needs to know and because we aren’t thinking about preventing threats to people who are out of sight and thus out of mind. Team theory can help with this. It can be applied to lots of different areas of life. In fact, I increasingly think of the lessons of Crew Resource Managment as Life Resource Management (LRM) . Sometimes, the rules of CRM applied to Life Resource Management is just what you need to get you out of all those pesky patterns you establish over years in a marital or family relationship. Thinking CRM or TEM would certainly have protected my husband’s thumb.
TWO DECADES ago, I went to Hollywood to try to turn a book into a movie. My non-fiction expose “Off Balance: The Real World of Ballet,’’ was a behind-the-scenes look at George Balanchine’s New York City Ballet and the School of American Ballet, as well as American Ballet Theatre and other professional dance companies. My account of starvation diets, workplace injuries, manipulative ballet masters, and stage mothers from hell was well received by dancers. Wealthy New York balletomanes were less enthused. Those who are determined to see nothing but beauty at the ballet don’t like to be reminded of its dark underside.
Because we couldn’t find a bankable star who looked like a ballerina, the project “died in development,’’ as they say in the business. But now, with the release of “The Black Swan,’’ ballet’s underside is on the screen. Starring the Harvard-educated Natalie Portman, this psychological thriller accurately conveys the essential misogyny of an art form that idealizes the feminine while leaving many young women in terrible physical and emotional shape.
Portman plays Nina Sayers, who has just won a principal dancer role in “Swan Lake.’’ She personifies the obsessive, competitive, and ultimately self-destructive character type produced by too many American ballet schools and companies. Her big career break comes when, instead of having two different ballerinas portray the virginal white Swan Queen and her evil twin, the Black Swan, the charismatic company director (played by Vincent Cassel) casts Nina as both (although, off-screen, one ballerina typically portrays both roles).
Since Nina is already mentally troubled, the ordeal of dancing both parts, fending off a seductive rival, living with her domineering mother, pleasing her director, and maintaining her anorexic figure leads to professional martyrdom when the curtain falls.
To prepare for her role, the already trim Portman shed 20 pounds. In true-to-life modern ballerina form, she appears, on screen, like many ballet anorexics — as a perfect prepubescent girl. This ballet “look’’ reflects the cruel ballet esthetic that is the enduring legacy of George Balanchine, the autocratic Russian dance master and choreographer who dominated the field for more than 50 years.
Balanchine’s influence has caused generations of dancers to starve themselves out of all the attributes of a real female body — like breasts, hips, and the ability to reproduce. It leaves many so malnourished they can’t recover from injuries and, in their twenties and thirties, many have the osteoporotic bones of post-menopausal women.
The film brilliantly depicts the way dysfunctional authority figures —whether parents, teachers or coaches — downplay anorexia. It also shows how these figures infantilize adult dancers, whose real-life companies refer to them as “boys’’ and “girls ’’ no matter what their age.
Before researching and writing “Off Balance,’’ I was a ballet lover too. But, afterward, I became like some pro football fans today; I knew too much about the current and long-term human costs of the thrilling spectacle I was watching. Unlike the parents of teenage athletes who have finally begun to worry about head injuries, many ballet parents seem as lost in the fantasy of sugarplum fairies as their 10- and 12-year olds. Several years ago, when a courageous ballet mother sued San Francisco Ballet School for discrimination because weight restrictions threatened to end her 8-year-old daughter’s training, other parents at the school rallied against her.
Portman has bravely criticized the “male-imposed social structure that women are supposed to fit into. . . these skinny bodies that take away their womanhood.’’ She’s on point. Clinging to destructive tradition is no way to honor this magnificent art form — or the artists who make ballet performances possible. Portman urges dancers to break out of past misogynist molds. Ballet should take her advice.
check out the interview I did on this with the great Canadian Broadcasting Company CBC show Q
Every year or so, a nursing organization or some polling group commissions a poll on which profession ranks highest in the public’s esteem. And each year, nurses win the trust, ethics and honesty sweepstakes. Just the other day I received yet another press release– this one from the American Nurses Association — entitled “Public Ranks Nurses as Most Trusted Profession–11th Year in Number One Slot in Gallup Poll” telling me how much the public values nurses. http://www.gallup.com/poll/112264/nurses-shine-while-bankers-slump-ethics-ratings.aspx. It was one in a long string of such announcements. With the exception of a poll commissioned post 9/11, in which fire fighters ranked number one, nurses always head the list. And immediately, nursing organizations like the American Nurses Association send out press releases announcing that nurses have once again won the trust sweepstakes. And many nurses smile happily because they believe they are trusted by the public.
You may sense a certain skepticism in my tone. And indeed, you are right. I am getting tired of these trust rankings. In fact, I’ve come to think of them as THE TRUST TRAP or THE TRUST PARADOX. Why a trap? Why a paradox? Because these rankings may lull nurses into believing that they really don’t have to inform the public about their work, because everybody trusts them. So they don’t have to go out of their way to do what my colleague Bernice Buresh and I have written about in our book, From Silence to Voice: What Nurses Know and Must Communicate to the Public, http://www.amazon.com/Silence-Voice-Nurses-Communicate-Public/dp/080147258X/ref=sr_1_1?ie=UTF8&s=books&qid=1291934526&sr=1-1 which is to talk, in detail, about what they do in their daily work. Indeed, people have told us that they don’t think they need to work harder to communicate their work to the public because they are so highly trusted. So that’s the trap.
Now here’s the paradox. If you’re a nurse, ask yourself the following two questions. Do you really believe the public trusts nurses? If you reply in the positive, then ask yourself the following question. Do you think members of the public — the same folks whosay they trust nurses — understand what nurses do? Really. If you answer in the negative, as many nurses do when I ask them those two questions, then you’ve stumbled over the paradox. I believe it’s true that many members of the public think nurses are trustworthy, ethical and honest. I also believe very strongly that most members of the public don’t have a clue what nurses do. So if people don’t know what nurses do, but think they are hyper trustworthy, why do they trust them? Because they are nice? Because they are, as nursing organizations constantly proclaim, “always there?” Like the chair? Or because they are a matter of life and death, the difference between hope and despair, because they are critical to patient rescue, coping, recovery, or a decent death? Because they are knowledge workers or because they are sentimental workers?
I am getting tired of these polls that try to assuage nurses and stroke them and make them feel better. Why? Because the very same people who apparently believe that nurses are so trustworthy, ethical, and honest also seem willing to tolerate consistent and relentless attacks on the profession. In every country I know, nursing is continually fighting both rear and front guard actions against assaults on nurses ability to do their work. In the US, hospitals aren’t hiring new grads and claim that the nursing shortage is over even if they have nurse-patient ratios of 1-6, 1-7, or even higher. They don’t want the public to understand that you can fill all your FTEs at those ratios and patients can still experience a shortage of nursing care. In Canada, provinces are instituting new — actually old — models of care, where they are replacing RNs with LPNs. But everyone still loves and trusts nurses.
I think it’s time we moved beyond trust and asked the public — and particularly health policy makers and administrators –to put their money and resources where their trust is. Trust is a great foundation upon which to build an accurate understanding of the importance of nursing but without that understanding, trust is definitely not enough. Nursing organizations have to move way beyond trust and so do nurses. They’ve got to go out and tell the public what they do so that patients can actually get the benefit of their expert care.
The December issue of the International Nursing Review, the official journal of the International Council of Nurses, has the following editorial that I wrote.http://onlinelibrary.wiley.com/doi/10.1111/j.1466-7657.2010.00862.x/full
Nursing Needs a New Image
Empowerment. Patient advocacy. These are some of the most commonly heard words in nursing. No matter where I go and no matter with whom I talk, nurses argue that one of their primary missions is to advocate for patients. They also acknowledge that patient advocacy is hardly easy. That is because genuine advocacy is not just wishing the patient well. All too often it involves taking a risk, speaking out in public, and/or explaining what nurses do and why it is so important for politicians and policy makers to allocate resources to support nursing care.
A decade’s worth of research has documented the crucial connection between nursing care and patient outcomes. Whether it is in the hospital, home, nursing home, school, rehabilitation facility, or the community, nursing can be a matter of life and death. The concept of ‘failure to rescue,’ developed by physician Jeffrey Silber and his colleagues at the University of Pennsylvania School of Medicine (Silber et al. 1992), and elaborated on by Linda Aiken and her colleagues at the same university’s School of Nursing, clearly connects nursing care to patient rescue. Rescue, these researchers show, is dependent on having enough educated eyes on the patient enough of the time to detect subtle change in the patient’s condition that could signal a catastrophe about to happen. It turns out that, in many instances, those educated eyes belong to nurses.
Educated eyes, however, are not enough to affect rescue. Rescue also depends on the individual or team’s ability to mobilize institutional resources to avert catastrophe. And herein lies the rub. In many institutions, and in many societies, social or institutional devaluation of nursing has long constrained nurses’ ability to mobilize resources to save patients. I would also argue that nurses are further constrained by a professional discourse that, with the best intensions, belittles and trivializes nurses’ knowledge and skill, depicts nurses as juvenile and sometimes even silly, and thus subtly dissuades nurses from speaking out and acting in the policy arena.
What do I mean by a trivializing, sometimes almost ‘juvenilizing’ discourse? It is what I characterize in my new edited collection, When Chicken Soup Isn’t Enough: Stories of Nurses Standing Up for Themselves, Their Patients and Their Profession, as the ‘chicken soup’ narrative of contemporary nursing. Or what Sioban Nelson and I have termed the ‘virtue script’ in nursing (Gordon & Nelson 2005). In both books and images, nurses and nursing organizations all over the world depict nurses as either sugar-coated, sentimental women (and men) or in ways that almost suggest that they are children. Instead of utilizing images and words that capture the critical research that has been done about nursing, many national and international public relations campaigns, as well as nursing organizations themselves, depict nursing as the work of modern angels endowed with extraordinary powers of empathy and compassion. Their role is to be soothing and reassuring. As they hold hands, hug patients and their families, give back rubs and smile beatifically at patients, almost everything that could really empower nurses is left out of the picture.
Many campaigns conducted by nursing organizations and public relations done by hospitals or governments fail to highlight that nursing requires technical, medical, and pharmacological – to mention only a few – knowledge and expertise. What is even more disturbing is that the public rarely learns that effective caring and compassion requires education and expertise. In other words, even the most emotional, psychosocial work that nurses do is an example of the mind at work, not the heart. That is because in nursing effective heart work is, in reality, guided by brainwork.
With all due respect to the organizations involved, let me give some international examples of what I mean. Several years ago, when celebrating its anniversary, a nursing organization urged its members to purchase a commemorative poster depicting two white child angels. At the turn of the 21st century, francophone nurses from all over the world gathered for a conference focused on the theme Nursing: An Expertise of the Heart. In some countries, nursing groups give out prizes of stuffed kittens or teddy bears wearing nursing caps, to nurses.
A specialty organization dedicated to advancing nursing education, clinical practice and research in the field of cardiology, undermines its serious mission with its logo: a childlike drawing of stick figures holding a fluttering ribbon and connected with a childlike drawing of a heart. When another nursing organization decided to launch a public campaign to make nursing more visible to the public, its slogan was Quiet Power– a message that contradicted the outspoken and knowledgeable nurses who appeared in the organization’s video and in magazine and newspaper articles.
Finally, when you walk into a hospital and check out the photos of nurses in hospital photos, recruitment material or publications, some of them put out by departments of nursing, you find two predominant images: nurses holding the hands of a patient or nurses smiling at the camera, at the patient, or even at machines. (In direct contrast, institutional photographs of doctors always show them either looking authoritative or like they know something.) If you look at the faces of real nurses doing their work, more often than not, their expression is one of concentration, of concern, a look that conveys that they are thinking.
Are nurses really angels? Are they kittens? Teddy bears? Do patients need ‘quiet’ nurses? (I for one want a really noisy nurse to intervene if a physician prescribed the wrong drug, or the pharmacy delivers the wrong dose). Why do organizations with serious missions choose childlike images that completely contradict the seriousness of nurses’ work? Would physicians, lawyers, stockbrokers, pharmacists, or physical therapists mobilize similar words and images to depict their work? (Hint, they would not and do not). In a world where nursing is often dismissed as mere ‘hand-holding’ or TLC and nurses are devalued as either kind but not very bright, or worse, as sex kittens, why do nurses themselves perpetuate these images? And in 2010, no less?
I would argue that whenever nurses mobilize this kind of discourse, they are not only shooting themselves in the proverbial foot with the public, but also limiting their ability to mobilize their forces to fight for the kinds of policy changes upon which effective nursing depends. Nursing as a profession is an organized, institutional intervention. Just as rescuing patients in the hospital depends on nurses’ ability to mobilize institutional resources, so too rescuing the broader health care system and nurses’ role in it depends on nurses’ ability to mobilize societal resources to affect change. Many nurses and nursing groups have done this to wonderful effect. But their job is made much harder by a discourse that I believe demobilizes nurses – and can often end up demoralizing them as well.
In 2010, as the world faces an on-going global recession, and governments and private payers try to cut back on nursing care, nursing really does need a new image – one that not only encourages empathy but activism as well. If nurses are to advocate for patients, they must learn to better advocate for themselves. This means risking moving away from the comfortable image of the sweet and kind nurse and telling the world what nurses really know and what they really do.