What’s Another Name for Chemo Brain?

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We follow the New York Times style guidelines and spell it as two words: chemo brain. I’ve also seen it as one word: chemobrain, or chemo-brain.  Others call it, “chemonesia,” or “cancer brain fog.”
If I were to call it something else, I’d just say, “fog” or “cancer fog.” I don’t think you need to say, “brain." Why be redundant?In fact, “chemo brain,” doesn’t always mean you've had chemo.  I know thyroid cancer and breast cancer patients who've had surgery and radiation only and they still report feeling like a planet of haze has taken over their brains.
And therein lies what’s so fascinating by this “chemo brain” concept.  Studies have consistently shown that about one-third of patients experience some amount of memory and other cognitive impairments even before they go through any kind of treatment, including chemotherapy.  Researchers believe that having cancer itself may contribute to the fog as the body fights the disease and is under stress from inflammatory molecules.
It’s also hard for scientists to tease out other contributors, like radiation, anesthesia from surgery, steroids, pain killers, and hormonal therapies.
Adding to the mystery of what’s going on, once these patients then begin chemotherapy, their memory problems get worse before they get better.
That’s why experts who study the field of cancer and cognition avoid the term, “chemo brain,” and call it "cancer or cancer-treatment related cognitive impairment."
That mouthful may be more precise, but "chemo brain" has become shorthand for the fog so many of us have experienced.  I'm happy to leave it at that. 

Michael Sieverts' Tips/Tricks to Recover Your Life

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My friend, Michael Sieverts, is a 10-year brain cancer survivor, a highly respected patient advocate, and a qi gong instructor for the Cancer Support Community. He is exceptionally well-read on the topics of brain health and cancer-related cognitive decline. ID

Michael Sieverts

By Michael Sieverts

This is a handout for the “Chemobrain” panel I moderated on February 21st at the Cancer Support Community-Benjamin Center. From my introduction that evening:

This is an incredibly important moment in the history of cancer treatment, and we appear to be at an inflection point in terms of understanding the multitude of diseases we refer to collectively as cancer. A good deal of the excitement has to do with scientificbreakthroughs in new imaging refinements, a greater understanding of genetics and the merging of math, chemistry, biology and physics. Young scientists aren’t staying in one discipline any more, instead they take up careers such as, “computational biologist,” and collaborate across disciplines.
But the other area of enormous progress, which is emerging as we speak, is the voice of the patient—our voice. As medicine becomes more collaborative, as we access our own information on the web and through other sources, and as we start talking to EACH OTHER and acquiring a collective intelligence, we have within our grasp the tools to take the entire enterprise to a whole different level.
This is not merely consistent with the mission of the Cancer Support Community—it IS the mission: that by becoming an active participant in your fight for recovery, along with your healthcare team, you’ll have a better quality of life.
One thing that’s important to keep in mind is that THIS IS A NICE PROBLEM TO HAVE—because by definition, having chemo brain is an indication that you’re alive. This is not a small victory, considering how many of us are here tonight despite having illnesses that not so long ago were characterized as “invariably fatal.” What a luxury, at one level, to have the focus shift from “how do I stay alive” to “how do I have a good quality of life?”Michael’s Tips and Tricks to Recover Your Life
Even though these tips and tricks are divided into categories, there are actually no real divisions. When you go to a support group, for example, you acquire important and relevant medical information about your illness. When you go to an exercise class, you get support from the other class members and improve your cognition. When you meditate, you gain calmness and increase your focus. And so on.
If I had to limit myself to one sentence of advice, I’d be hard-pressed. But here goes: pay close, moment-to-moment nonjudgmental attention to what’s happening in you and around you, get and stay healthy, get support, claim your strengths without obsessing about what you perceive as your failings, and be grateful and peaceful whenever you can manage it.
I highly encourage you to seek out people to support you in the process, people who have gone through what you’re going through—their advice and support is invaluable. If your illness is so obscure or rare that you can’t find other survivors locally, use the Internet to locate others—just about every disease has its own community at this point. That’s how you’re going to find the right treatments and right doctors—the good doctors get better results.
Techniques to Build Cognition:
● Build your memory: challenge your brain by learning a new language or a musical instrument. Doing crosswords and Sudoku are fine, but the skills involved don’t seem to translate to tackling other kinds of tasks.
● Keep your mind active—keep a journal, read literature and poetry, go to concerts and museums and lectures.
● Be actively involved in your medical treatment. Research and understand your illness—become a partner in your recovery with your medical team, stay current on advances in the field, join the e-patient movement.
● Research which parts of your brain are not functioning well, because that will inform you about where to direct your recovery effort.
● Find the best doctors for your specific illness, and then make them look like geniuses by having the best recovery possible.
● Find gentle ways of challenging yourself, look for your true talents—your gifts will always be your gifts, in my experience.
● Practice—aim for continual improvement and develop good habits.
● Treat your attention as a valuable resource, spend it wisely.
“Ever try. Ever fail. No matter. Try again. Fail again. Fail better.” – Samuel Beckett

Reading List and Web Resources:
Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Dan Silverman, MD, PhD, and Idelle Davidsonwww.YourBrainAfterChemo.blogspot.com
Brain Rules: 12 Principles for Surviving and Thriving at Work, Home, and School by John Medinahttp://www.brainrules.net/
The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (Null) by Norman Doidge
The Memory Bible: An Innovative Strategy For Keeping Your Brain Young by Gary W. Smallhttp://www.semel.ucla.edu/longevity
The Body Has a Mind of Its Own: How Body Maps in Your Brain Help You Do (Almost) Everything Better by Sandra Blakeslee and Matthew Blakeslee
The Better Brain Book by David Perlmutter and Carol Colmanhttp://www.powerupyourbrain.com/
Incognito: The Secret Lives of the Brain by David Eaglemanhttp://www.eagleman.com/
SAT Question of the Day:http://sat.collegeboard.org/practice/
Word a Day:http://wordsmith.org/awad/
Seek out intelligent discussions:TED talks:http://www.ted.com/talks
Google Talks:http://www.youtube.com/user/AtGoogleTalks
Poptech Talks:http://poptech.org/
e-patient movement:http://e-patients.net/
Charlie Rose’s Brain Series:http://www.charlierose.com/view/collection/10702

Compensation Strategies (adapted from “Your Brain After Chemo”):
● Stay present. Remind yourself to focus. Learn to meditate, and to pause before you take an action.
● Prioritize. Don’t think that you can multitask and perform. Do fewer things and do them well. What you decide not to do might be as important as what you actually decide to do.
● Develop routines. Keep the same daily schedule as much as possible. Prepare for the day the night before by reviewing your calendar. Exercise and eat at regular times, use a divided pillbox to remind you to take your medications properly.
● Rehearse. “Repeat to remember” to improve short-term memory, “remember to repeat” for longer term memory.
● Tell yourself stories about the person you just met. Say the name out loud, ask them to spell it, remark on the similarities to a celebrity’s name, or to someone else you know with the same name.
● Use word associations and rhyming. This increases the impact of a name or address on memory.
● Cue the senses.
● Break numbers into chunks.
● Don’t use scratch paper. Instead use a single notebook.
● Use a paper daily planner to write down all your activities, even movies and chores—and remember to look at it. You remember things better when you write them by hand than if you type them on a keyboard.
● Use your planner to keep track of your memory problems and other symptoms, so you can discuss changes in your condition with your doctor, who’s going to want to know what happened and when. Do not ignore symptoms, regard them as a blessing, if they lead you to solving a problem earlier than later.
● Everything in its place. Always put keys, checkbook, cell phone and wallet in exactly the same places. Start regarding your purse or backpack as a system.
● Chew gum, yawn—increases oxygen flow to the brain.
● Retain a sense of humor—it’s lighter than you think. Self-forgiveness is an important way to “get over it.”
● Sometimes something that seems terrible can be viewed from a different angle, and regarded as not only not so serious, but maybe as a benefit—and possibly as a great benefit.
Manage your technology:
● Use email to make a data trail of conversations and commitments, and ask family and friends to sign on too to this method of communicating.
● If you have a task to accomplish, don’t respond to every email as it comes in—look at them and respond to them in batches.
● Manage the phone—don’t answer unless you know who it is and it’s someone you want to talk to at that moment. Use anonymous call blocking, caller ID, and an answering machine to screen calls.
● Minimize television viewing, especially TV news.
● Don’t expect a smart phone to replace a computer—it’s too hard to read attachments on a phone, you don’t retain the information the same way.
● Use your computer’s alarm functions to remind you to do certain tasks—moving the car for street cleaning, for example, or picking up kids.
● Leave messages for yourself as reminders. Call your own answering machine.
● Use a timer when cooking, stay near the stove when it’s on, don’t wander away from the kitchen.

Driving:
● If you drive a car, be aware that cognitive deficits don’t make you a better driver, and that a car is a weapon to bicycles and pedestrians.
● Drive carefully, on familiar routes, being patient and generous with other drivers.
● Allow enough time or permit yourself to be slightly late—“caught in traffic” is a completely valid excuse in LA.
● If you are feeling iffy about your cognition—we can often tell when we’re not 100%--either stay home or, if you’re out, drive slowly and carefully home.
● Drowsiness is a cause for red alert—pull over immediately.
● Learn the bus system, let professionals drive you where you need to go.

Reading List and Web Resources:
Getting Things Done: The Art of Stress-Free Productivity by David Allen
One Small Step Can Change Your Life: The Kaizen Way by Robert Maurer

Meditation:
There are many forms of meditation, and choosing one over the other is a matter of personal preference. I happen to like mindfulness-based meditation, as promulgated by Jon Kabat-Zinn—the tone of his advice is just right for me and many others, but it might not be for you, you might prefer a meditation technique that utilizes a mantra, like Transcendental Meditation, or any of the other forms. No matter—you can use any one of them to deeply explore your consciousness.
The key thing to remember is that learning to be in the present, in the now, is both utterly simple and very challenging. It can take a lifetime to learn. Even the Dalai Lama says that he’s still learning.
There’s a reason they call it a practice:
When we are giving ourselves the experience of being relaxed, calm, alert and objective, we are practicing and perfecting mindfulness. When we are being tense or angry or anxious, we are practicing and perfecting being those states as well—BUT, if we are observing that we are going to those places while we’re doing it, we have the opportunity to take ourselves back to the relaxed place. It’s ultimately about cultivating an inner strength.
I’ve heard the distinction made between prayer and mediation is that when you pray you’re talking, you’re asking for something—and when you meditate you’re just listening. Some people call it “falling awake.”
There’s a huge body of literature, and courses offered everywhere, many for free.
You can study in classes, and go on retreats, which are great, but ultimately the idea is to be able to live your whole life with a mindful aspect. As my teacher says, “lead an ordinary life and make changes from within that life.”
Don’t let your environment throw you off, cultivate inner strength and the ability to not let your mind wander.

Reading List and Web Resources:
Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn  (You can Google Jon Kabat-Zinn for tapes, CD’s and online videos)
The Heart of Understanding: Commentaries on the Prajnaparamita Heart Sutra by Thich Nhat Hanhhttp://www.plumvillage.org/
When Things Fall Apart: Heart Advice for Difficult Times (Shambhala Library) by Pema Chodron
Fingerpainting on the Moon: Writing and Creativity as a Path to Freedom by Peter Levitt


Exercise/Sleep (adapted from “Brain Rules”)
Exercise:Properly done to avoid depletion and injury, exercise is one of the best things you can do for your cognition. Early human brains developed in almost continuous motion, hunting and gathering food, walking vast distances daily. Only recently have we become physically idle.
All exercise increases blood flow and oxygen levels. Increased oxygen to the brain is associated with improved cognitive function. Exercise rids the body of stress chemicals, and boosts brain power. It cuts the risk of dementia in half.
My observation is that the healthier you are, the easier it is to survive the treatments. If you have the “luxury” knowing that a treatment or procedure is imminent (as opposed to requiring an emergency surgery), prepare yourself by getting as strong as possible. Train as if you’re training for a triathalon, you’ll need all the strength you can muster.

Your regular exercise:● Exercise daily, but not necessarily vigorously—at least 30 minutes, out in natural light and fresh air when feasible.
● Power walking, swinging light weights in your hands to involve your upper body, is a great way to get exercise. Human brains evolved as we walked great distances, and it remains the best all-round exercise.
● Gentle yoga, Feldenkrais, Qi Gong—explore to find the ones that work best for you.
● Any exercise that makes you feel light—that’s the right one for you.
● Avoid exercise that depletes you, which is bad for your immune system.

Sleep:Sleep is incredibly important, for cognition, for the immune system, for mood and happiness, so develop good sleep hygiene. Avoid going deep into sleep debt—accumulating consecutive nights of short sleep. “You can’t be healthy if you’re not getting good sleep”:
● Go to bed at a regular time, preferably before 11pm.
● Avoid stimulating activity for the few hours before bed, prepare.
● Avoid eating before going to bed.
● Don’t watch television, or work on a computer in bed.
● Use relaxation techniques to help yourself fall asleep.
● Use the bedroom only for sleeping and sex, not for eating or working.
● Keep the bedroom dark—light interferes with the functioning of your pineal gland.
● If you are occasionally unable to sleep, don’t stress about it, get up for a little while and do something else, preferably not too stimulating.
● If you feel drowsiness, be extremely careful, you literally could fall asleep in a heartbeat—do not drive!
● If you’re having regular trouble sleeping, see a specialist.

Reading List and Web Resources:
Spark: The Revolutionary New Science of Exercise and the Brain by John J. Ratey and Eric Hagerman
The Way of Energy: Mastering the Chinese Art of Internal Strength with Chi Kung Exercise (A Gaia Original) by Kam Chuen Lam
The Promise of Sleep: A Pioneer in Sleep Medicine Explores the Vital Connection Between Health, Happiness, and a Good Night's Sleepby William C. Dement and Christopher Vaughanhttp://www.bettermovement.org/author/toddhargrove/

Nutrition (adapted from “Food Rules”):
Eating should be a source of pleasure. The reality is that we’re omnivores, and people have been thriving on a wide variety of diets for millenia. Michael Pollan says that the field of nutrition today is like the field of surgery in 1650—promising, and interesting to watch, but not yet deserving of our total trust. The popular press has made a total hash of the field of nutrition by using the latest headlines to sell papers— findings which gyrate wildly. Margarine, fats, carbohydrates, —sometimes they are the villains, causing all sorts of health problems—then they regain or fall out of favor. And the government is under the sway of the agriculture and food lobbyists; federal dietary guidelines and recommendations are compromised and getting worse.
But don’t stress too much, it’s not difficult to make good food decisions, especially now. Make sure to enjoy yourself, to make eating a pleasurable, slow, and social, function. Follow some simple guidelines, and use your self-awareness to inform you whether what you’re choosing to eat is helping you or causing you setbacks.
Whenever feasible, do your own cooking with organic, local, seasonal, sustainable fruits and vegetables. (Support farmers and the local economy with your money—you are voting for a healthful food system.) Not only can you control the ingredients and the cooking methods, but you are taking an active role in your fight for recovery. Plus you will save money by not eating out. It’s estimated that as much of 2/3 of the cost of medical care in this country is attributable to our poor eating habits. Cooking is a profound way to influence your health: “The best public health tools are a sharp chef’s knife, two cutting boards and a salad spinner.” (Preston Maring, MD, associate physician-in-chief at Kaiser Permanente Oakland)
Restrict wheat, dairy and try to eliminate sugar—but aim for “90-10”: allow yourself some small indulgences to retain feelings of pleasure, since mood affects how you digest. A happily-enjoyed burger is probably providing better-absorbed nutrients than an organic raw kale salad that you are forcing down. Savor what you eat.
Other rules:
● Don’t eat food that comes through your car window.
● Read labels-- avoid foods with sugar (or sugar equivalent) as one of the first 3 ingredients.
● Avoid food with more than 5 ingredients, or made with ingredients you wouldn’t plausibly have in your pantry.
● Junk food is fine if you make it yourself. If you had to clean up after every batch of French fries, you’d rarely make them.
● Get the best ingredients, from farmers if possible. If you shop in supermarkets, buy only on the perimeter—it’s where they put the freshest food.
● Eat until you are satisfied, not full.
● Don’t feel like you have to finish what’s on your plate.
● Don’t go back for seconds.
● Spend more on ingredients, but eat less.
● Transparency is important—don’t buy from vendors who are secretive about where their food comes from. 
● Local non-organic is better than organic from long distances—foreign agricultural practices are unregulated.
● Eat food in season—it tastes better, has traveled less.
● Eat a rainbow of plant foods—the phytonutrients in the colors are very healthful.
● Spend at least as much time eating a meal as it took to prepare it.
● Try not to eat alone.
● Break the rules occasionally.

Reading List and Web Resources:
Anticancer, A New Way of Life, New Edition by David Servan-Schreiber MD PhD
What Color Is Your Diet? by David Heber
In Defense of Food: An Eater's Manifesto by Michael Pollan
Food Rules: An Eater's Manual by Michael Pollan and Maira Kalman
Dr. Jeanne Wallace:http://www.nutritional-solutions.net/

Attitude/Belief/Support:
Last but not least: the goal is not to live forever, nor to return to an old place, but rather to transform ourselves into healthy people, utterly at peace with ourselves, our families and our friends. Create a tradition of peacefulness:
● Feel gratitude
● Forgive yourself, lighten up, and loosen your grip. Find some humor in your situation.
● Cycle through the Mel Brooks catalog and other comedies.
● Connect to others, don’t try to keep everything internal. Cultivate relationships with those who support your healing process and your medical choices.
● Be aware of whether someone is being helpful or not—and if not, find a way to marginalize and ignore them.
● Develop an immune-competent personality, monitoring and taking care of your own needs, and resisting becoming a self-sacrificing martyr.
● Reduce your anger, stress and anxiety.
● Don’t do anything you hate doing—if it’s something that you have to do, find a way to re-frame it so that you’re not flooding your system with stress hormones.
● Use your illness as a teacher—what it can tell you about medicine, about compassion for yourself and others, and about how to care for yourself.
● An illness is a terrible thing, but with the right attitude it might be a benefit—and it might wind up being the best thing that ever happened to you.
● Find your true talent, discover your purpose in life. Why have we been put here?

Reading List and Web Resources:
Man's Search for Meaning by Viktor E. Frankl
A General Theory of Love by Thomas;Amini, Fari;Lannon, Richard Lewis
Cancer As a Turning Point: A Handbook for People with Cancer, Their Families, and Health Professionals by Lawrence Leshan
Wellness Community Guide to Fighting for Recovery from Cancer by Harold H. Benjaminhttp://www.cancersupportcommunitybenjamincenter.org/
http://www.simmsmanncenter.ucla.edu/

I’d like you to keep in mind Raymond Carver’s last poem:
Did you get what you wanted from this life, even so?
I did.
And what did you want?
To find myself loved,
To feel myself loved, on this earth.
Stay in touch with your loved ones, radiate peacefulness, and stay part of the conversation.
michael

(Michael Sieverts' Blog)

Cognitive Effects of CMF May Last 20 Years

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In a study reported yesterday in the Journal of Clinical Oncology, researchers found that breast cancer patients who received the chemotherapy regimen CMF between 1976 and 1995, scored significantly worse on tests of word recall, information processing speed, and psychomotor speed (coordinating and inserting pegs into a board) than a control group of women who had no history of cancer.
CMF stands for the drugs cyclophosphamide, methotrexate, and 5-fluorouracil (or 5 FU). Animal studies also show that CMF is linked with impaired learning and changes in brain structure and we report on this in Your Brain After Chemo. Yet this recent study, led by Dutch researchers Vincent Koppelmans and Sanne B. Schagen, is the first to show such long-term impairment.

The pattern of memory problems is similar to what patients experience shortly after completing chemotherapy, say the authors who looked at the neuropsychologic test results of 196 women, comparing them to the controls.

Fortunately for newly diagnosed breast cancer patients, oncologists generally no longer prescribe the “M” in CMF.  Instead they replace it with anthracycline-based drugs (ie: doxorubicin instead of methotrexate) which seem to have fewer cognitive side effects. Cyclophosphamide and 5-fluorouracil are still prescribed though and 5-fluorouracil also is linked to post-chemo cognitive decline in some studies.

For those of us in the cancer community who keep a close watch on the research, studies like these – while upsetting – inspire hope that one day soon more effective targeted therapies will kill cancer cells while leaving healthy brain cells intact. -- ID

Journal Abstract: Neuropsychological Performance in Survivors of Breast Cancer More Than 20 Years After Adjuvant Chemotherapy

Cedars-Sinai Program Helps Professor Emerge From Haze

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Karen Saywitz, PhD

Karen Saywitz, PhD, is a cancer survivor who -- thanks to a rehabilitation program at Cedars-Sinai -- has found strategies to help with post-treatment cognitive issues. Last month, she shared her story at the Cancer Support Community (CSC) - Benjamin Center in Los Angeles. Joining her were fellow panelists: Michael Sieverts, a patient advocate and CSC qi gong instructor; Mi-Yeoung Jo, PsyD, ABPP, a Cedars-Sinai clinical neuropsychologist; Arash Asher, MD, director of the Cedars-Sinai Cancer Survivorship and Rehabilitation Program; and myself. What follows is Karen's talk from that evening. -- ID

By Karen Saywitz, PhD
Before I was diagnosed with cancer, I led a fast-paced life. I was a tenured professor at a major university who conducted research, taught seminars and I ran a clinical program with a staff of 20 M.D.s, Ph.D.s, and social workers--a program that delivered mental health services to families of children prenatally exposed to drugs and alcohol. I traveled some, consulting for the Department of Health and Human Services, The Centers for Disease Control, and the American Psychological Association. In fact, two days before I was diagnosed, I had been in Washington, DC, giving a congressional briefing in the Senate Building on children’s mental health care. Most nights I was making a healthy dinner for my husband and my two children, driving carpools, attending my daughter’s concerts, and cooking multi-course holiday meals for a crowd.

After my diagnosis, I had multiple surgeries with the obligatory complications, picked up a host of infections because my immune system was suppressed, and had six months of chemotherapy until I couldn’t take it anymore. By the end, I was walking into walls and cabinets, pretty out of it. My uncharacteristic ditzy conversation was a source of great amusement for my daughters and sisters. I wasn’t driving, grocery shopping, cooking for my family, socializing or working…..I had basically been in bed for 9 months. But after the most intense period of treatment was complete and I had survived the life-and-death battle, there remained a variety of symptoms and side effects that had not remitted. Among them, these nagging cognitive difficulties: symptoms I came to learn were not uncommon after cancer treatment.

One day I went to fax something, I put in the wrong number. I walked back to the desk, looked at the number a second time, walked to the fax machine, same thing, a third time, same thing. As a psychologist I knew that usually you have about 12 seconds of short-term memory without rehearsing something before it fades. Obviously there was something wrong with my short-term memory; it didn’t take that long to walk across the room. My husband, who was talking to me about something entirely different, offered to do it for me. The next day, I went to compute some simple mental math and again, it was a problem, but once I picked up a paper and pencil I could do it easily. There was something wrong with my working memory, my mental scratch pad.

I tried to start cooking meals again and found I had trouble staggering the cooking times of the dishes to get them all out of the oven at the same time. “Here, just eat the side dish first, I know you are hungry and its dinner time, but I just realized that the main dish still has another 40 minutes to go.” Something was wrong with my ability to multi-task. I had trouble talking on the phone while cooking, “Hello Mom…. Are you there?” I had trouble sustaining my attention across interruptions and distractions, switching attention back and forth between two frames of reference. People began alluding to things they had already told me in prior conversations that I did not remember, and I wondered if I did not encode the information because of distractions or interruptions to my attention.

In addition to short term memory and multi-tasking, I noticed that there were a lot of mental tasks that took forever for me do, like finding the right words that I thought were on the tip of my tongue. I seemed to have such a slow speed of processing information, I could still do a lot of the same tasks, but it took a lot longer, I was worried about missing deadlines, giving lectures from memory. …Needless to say I was worried that my brain was broken and my re-entry into the workforce would be a disaster. All I could see was that the bright future I envisioned for myself was crumbling. I couldn’t imagine reciting research findings chapter and verse the way I used to.

When I talked to my oncologist, Philemena McAndrew, she referred me to the Cedars Rehabilitation and Cancer Survivorship program where I met Dr. Asher and Dr Jo. Over the course of the next three months in their comprehensive rehabilitation program, I got out of bed and started exercising, slowly in fits and starts, going to physical therapy to regain range of movement so I could drive, and cooking my favorite recipes but first making a chart that worked backwards from dinner time. I started practicing qi gong two to three mornings a week, and wore a pedometer, trying to walk 10,000 steps a day. I attended a six-week class called, “Emerging from the Haze,” that involved a neuropsychological evaluation with feedback on how to work around my attention, processing, and memory problems. I figured out a wide range of strategies to compensate, accommodate and side step my problems.

I would like to say that mine is a simple story of loss and recovery. And to some extent it is, there were certainly losses in terms of my abilities and I have made steady improvement. But I have yet to fully return to the same cognitive functioning I had before this all began. So I am going to say that it is a story of loss and resilience ….of patience, pacing, prioritizing, balancing, and hard work. Of course, I could not say what will work for someone else. Each cancer is different; each person’s reaction to treatment is different. But I fought for my brain. It took a lot of effort, but it was worth it. It has been like learning to read music and play the piano for the first time late in life. At first you have to look at your fingers, look up at the music, down and up, it’s a halting choppy, laborious procedure, your joints hurt and your hand eye coordination isn’t what it was, but if you persist, eventually you get things onto automatic pilot and you can play a piece without putting so much conscious effort into it.

What I’ve learned is that the path to recovery takes a concerted, integrated effort of both physical and mental exercise, but it is also an extraordinary learning opportunity to develop new strengths and abilities. What did I do? In the chemo brain class I learned to be more self-aware, monitoring my cognitive errors over the course of a day or a week, what triggered them, under what circumstances they appeared, and what were the consequences. I learned to pace myself, use memory mnemonics like imagining a neon sign above a student’s head with their name on it or above my car with the level and section on it, because at a large university you can’t just park in the same spot each day. I learned to be more flexible, give myself breaks, to use checklists, giving myself more time on deadlines.

Not everything I tried worked. I felt like a GPS navigation system that kept recalculating the route to my destination. I had a neuropsychological evaluation with Dr. Jo and she identified a certain type of memory problem: proactive memory interference. That meant new information would interfere with my ability to recall prior information, ie: trouble getting back on track once interrupted with new input. Dr. Jo and I talked about my returning to work and preparing detailed power points as an external cue to prompt my memory and stay on track, and having students wait until the end of the lecture to ask questions.

But once I started back to work, I would inevitably run over and there wasn’t time for questions… and the class was boring! During all those months at home in bed with my iPad, I had become an aficionado of the internet, Ted Talks and YouTube. So I started using internet video clips to demonstrate concepts better than I ever explained them before by citing all those research findings chapter and verse by heart. I got over my pride and started telling students, "I don’t know the answer to that question off the top of my head, I’ll look that up and get back to you,“ and then wrote down their questions.

Now, I am happy to say this is my second semester of teaching again at the university. I would say that the last lecture I gave on Thursday is one of the best I have ever given. Not one student had the nerve to check his BlackBerry during class. That could be a first. I give the students more of the wisdom I’ve gained through this process, lessons for life. And most of the time, I can find my car in the university parking lot on the first try.

Michael asked that each speaker provide three take-home points. So what did I learn?

1. Be resilient. If you find you have some nagging cognitive problems after the intense treatment phase is complete, it’s a setback, but be flexible and persevere.

2. Be proactive. It is not realistic for oncologists or surgeons to be responsible for this transitional stage of your care. They simply do not have the time or expertise. Accept that there will be a transitional stage of rehabilitation during which there is a lot we patients can do to influence our internal biology, educate ourselves, and seek professional help from the field of rehabilitation medicine and neuropsychology. This can make a huge difference in the level of functioning we attain. These are core health care issues, not optional or ancillary ones.

3. Develop an observing ego and keep moving forward. Find a viewpoint from which you can observe yourself and how you interact with the world you live in. From this you will see choices, options, for being in control again. Use your brain. Learn something fun that revitalizes you rather than drains you. I no longer believe I will be returning to my previous life. I think that the landscape has changed forever; I am going forward, in new directions, still on a magnificent journey. - Karen Saywitz

Resources:

Cedars-Sinai Cancer Survivorship and Rehabilitation: (310) 423-2111
Cedars-Sinai Neuropsychology Services: (310) 423-9722
Cancer Support Community: (888) 793-9355
Michael Sieverts' Blog

How to Use This Blog

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ByIdelle Davidson
Welcome. I hope you'll find the articles and stories here valuable. To begin, browse the LABELS index (right column, bottom of page) and check out reader favorites such as:
1) How Chemotherapy Changes the Way You ThinkThere you'll find my four-part series on how treatment affects your mind, including an introduction and a discussion of issues with executive functioning (planning ahead, multitasking, solving problems, etc.), information processing and word retrieval.

2) ResearchYou may be surprised to learn that scientists are finally beginning to connect the dots between chemotherapy and cognitive dysfunction.  Read about advances at the University of Rochester, M.D. Anderson Cancer Center, Indiana University and other institutions.
3) Ask the ExpertsDoctors and others answer readers' questions about brain fog.
4) New York Times Consults Blog With Dr. SilvermanDan Silverman responded to readers' questions in the New York Times about "chemo brain.'  Read a sampling of the questions and answers here or click on the link to the actual New York Times blog.
5) Is "Chemo Brain" A Disability Under the Americans With Disabilities Act?Read my Q & A with attorney Joanna Morales of the Cancer Legal Resource Center and learn how you can protect yourself in the workplace.
6) StoriesFor those of us who have traveled through cancer or are experiencing it now, how does sharing our stories help us find our way? The answer lies in validating each other's thoughts and feelings so that no one feels isolated. The answer lies in connection, in community.
My favorite story submitted by a reader is from Lori. Find it in the LABELS index under "I Appreciate Your Book." The first line of her note to us is what made the two years it took to write our book all worth it.  She begins: "I would like to tell you how much I appreciate your book - I bought it yesterday, read it all night, with a highlighter, crying...."

If you read all twenty stories, you'll come away with a pretty good idea of the toll "chemo brain" takes on cancer survivors and their families.  Michelle writes about trying to be loving and patient with her husband who went through chemo for Hodgkin's and is now chronically forgetful.  Susan M. tells us about her breast cancer diagnosis at age 38 and how she is still dealing with fog and depression.  Lois wonders if she has Alzheimer's.  Bruce Lantry was treated for leukemia.  He has found ways to cope with his loss of mental focus.

Yet, these really are so much more than stories.  These are messages.  They are here, on this blog, from men and women of all ages and all cancer types.  They are here to confirm that each of us matters.

Also, make use of the SEARCH BOX at the top right of the page.  Put in keywords like lymphoma or breast cancer or memory or multitasking or driving, or word retrieval, or exercise, and see what articles and resources come up.

And finally, to really learn about "chemo brain," to understand what causes it and what you can do about it,  get a copy of our book: "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus" by Dan Silverman, MD, PhD and Idelle Davidson.  See the reviews on Amazon.

Perednia: "Starting Over With Healthcare Reform Is, Unfortunately, a Matter of Religion"

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Over at "The Road to Hellth" blog, Douglas Perednia MD has written an excellent piece entitled "Starting Over With Healthcare Reform Is, Unfortunately, a Matter of Religion."

The use of the term "religion" is not literal but figurative:

... In deciding what to do [in recent years], political leaders stopped dealing in experience, evidence and compromise, and began dealing in faith-based – almost religious – healthcare decision-making.Of course in this context we’re not talking about “faith-based” in its meaning of handed down from the one true God (or the many true Gods, depending upon your religion), but instead faith-based in the sense of having fixed and immutable beliefs about things like how to run healthcare or, indeed, the whole country.  It doesn’t matter what the available evidence shows or what human experience has been, the political religions of the left and right, Republicans and Democrats, won’t tolerate alternative facts, strategies or explanations.  Doing so would be sacrilege, remediable only by human sacrifice. 

The point of his post is that in the U.S. both political parties have abandoned all pretense of listening to science or reason and making compromises that benefit patients.  They are making all decisions on fervently-held, unshakeable ideological beliefs (and, I add in some cases, for personal gain no matter the consequences to the public).

I am reproducing the section of his essay on health IT, that illustrates his point well:

A third example is the sacrificial cult of electronic medical records.  [Sadly, that phraseology is all too apt - ed.]  Except for those who work at Departments of Medical Informatics or as physician “champions” for EMR vendors or health systems that are spending billions to implement the darned things, the vast majority of doctors and nurses will tell you that EMRs are a chainsaw to clinical productivity and the amount of time that we actually spend listening to and getting to know our patients and their problems.  Non-vendor, non-government studies that show that these systems save money or actually improve clinical results are scarcer than hen’s teeth, yet not a day goes by without having shamans in the Cult of EMR claim that we will see miraculous increases in efficiency, reductions in cost, improvements in health and a blooming of preventive medicine “any day now”.  

These claims are increasing in intensity and shamelessness.  This is at a time when it is admitted by some of the most respected scientific bodies (e.g., National Research Council, FDA, IOM, NIST) that the technology does not support clinicians' cognitive needs, is in fact disruptive and hard to use, and reports of harm are appearing.  Worse, they report - magnitudes of reported harm are unknown due to impaired information diffusion.  The impairment is both due to lack of regulation and regulatory authorities to report to (which allows opportunism), as well as due to business IT-modeled legal contracts with IP-protection and defects gag clauses.

The cult has grown so powerful that has been able to force clinics and hospitals to sacrifice themselves in the process; goaded by the awards and penalties handed out for the presence or absence of “meaningful use”.  It’s no great revelation that is a new technology is truly useful, beneficial and cost-effective, there is absolutely no reason that a government would need to mandate its use or bribe people to buy it.  Dr. Scot Silverstein at the Health Care Renewal blog has devoted his career to documenting the questionable engineering and lack of clinical awareness that goes into these systems, but you will not identify single iota of doubt in the pronouncements of the Office of the National Coordinator or the politicians who are receiving funds and advice from the “healthcare information technology” (HIT) industry.  Their minds are made up.  Don’t confuse them with the facts.

I wouldn't say I've "devoted my career" to documenting the problems only.  I've been spending considerable time now doing something about it.  This includes, in part, advising attorneys on both sides of the Bar on the problems they need to be aware of.

This knowledge will likely benefit plaintiff's lawyers and injured patients far more than the defense.  There is no defense for cybernetically harming people with poorly designed and implemented, experimental medical devices, used without patient informed consent, or for trying to conceal the malpractice via electronic legerdemain.

It is my belief that a fair share of cavalier health IT experimenters, dyscompetents and "creative medical history editors" responsible for the current shabby state (technically and ethically) of commercial HIT, a situation that could have been avoided via learning from the medical and technological past, will have a very unpleasant and costly time in the courtroom in future years. 

-- SS

The Spoils of a "Scorched-Earth Defense" - Merck CEO Got $13.3 Million in 2011

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Last week, Bloomberg reminded us of the legal baggage that pharmaceutical giant Merck is carrying. The company had announced yet another settlement of legal actions pertaining to its ill-starred but very profitable sales of now withdrawn Vioxx (rofecoxib) in 2011 (see post here). Now the settlement, including a guilty plea was accepted by a judge.

A unit of Merck & Co. (MRK), the second- largest U.S. drugmaker, pleaded guilty to a criminal misdemeanor charge as part of a $950 million settlement of a U.S. government probe of its illegal marketing of the painkiller Vioxx.

An official of Merck Sharp & Dohme said today that the company agreed to plead guilty to one count of misbranding Vioxx. U.S. District Judge Patti Saris in Boston accepted the plea as part of the drugmaker’s agreement to pay a $321.6 million criminal fine and $628.3 million to resolve civil claims that it sold Vioxx for unapproved uses and improperly touted its safety.

'I’m certainly going to accept this agreement because I think it’s in the public interest,' Saris said from the bench. 'I hope the size of this settlement and the fact that all these cases are being pressed by the federal and state governments -- the 44 states’ attorneys general -- will be a signal that this isn’t acceptable conduct.'

But unacceptable conduct can lead to a great deal of revenue. As Bloomberg noted,

Approved by the Food and Drug Administration in 1999, Vioxx became Merck’s third-largest-selling drug by 2003, generating $2.5 billion in annual sales. The company pulled Vioxx off the market in 2004 after a study found it posed an increased risk of heart attacks and strokes.

It can also lead to a great deal of personal profit for those at the company tasked with defending such "unacceptable conduct," and what has now been found to be criminal behavior. Writing in Slate, Snigdha Prakash, who wrote All the Justice Money Can Buy about the legal aftermath of Vioxx, identified the current Merck CEO and board chairman as the architect of the defense of Vioxx, as

best known for his phenomenal success in defending a sordid chapter in Merck’s recent past—its years-long silence about the safety problems of the popular painkiller Vioxx.

Furthermore, she wrote,

As he showed with the Vioxx litigation, Frazier is adept at mounting a scorched-earth defense that minimizes payouts to potential plaintiffs.

Tens of thousands of former Vioxx users sued Merck after it withdrew the drug, alleging Vioxx had caused them to suffer heart attacks and strokes. Frazier, then the company’s general counsel, declared Merck had done nothing wrong and refused to settle. 'We’ll fight every case,' he declared, and hired top-flight law firms in several East Coast cities, in the South, in Chicago, and Los Angeles, as well as a prominent New York firm to coordinate the overall strategy. It took three years and $2 billion in legal expenses for Frazier’s hard-nosed tactics to pay off. Merck settled in late 2007 for a relative pittance, resolving some 50,000 Vioxx cases for just under $5 billion. It was a far cry from the $25 billion to $50 billion in liability that analysts had predicted when Merck withdrew the drug.

So it appears that Mr Frazier is now reaping his rewards. The Dow Jones News Service reported earlier in April,

Merck & Co.'s (MRK) leader received compensation valued at $13.3 million for 2011, up 41% from the year before, reflecting his ascension to the drug maker's top post and Merck's ability to exceed certain internal performance targets.

Kenneth Frazier, 57, became Merck's chief executive at the beginning of 2011 and chairman of the board in December. He was previously head of Merck's human health business.

In a proxy statement filed Thursday with the U.S. Securities and Exchange Commission, Merck said certain elements of Frazier's compensation reflected growth in Merck's sales and adjusted earnings for 2011.

In addition, Merck's board considered 'his performance, leadership, planning and oversight during a time of continued economic, regulatory and political challenges for the healthcare industry.'

Earlier this year, Frazier acknowledged that Merck had a tough 2011. The company endured setbacks including negative clinical data for a once-promising heart drug, vorapaxar. Merck's full-year stock price performance lagged behind most of its large-pharmaceutical peers.

But Merck of Whitehouse Station, N.J., continued to cut costs and was able to raise its dividend for the first time in seven years in 2011. Frazier said in January he was optimistic about 2012.

Frazier's total compensation included: $1.5 million in salary, $3.1 million in stock awards, $3 million in option awards, $3.1 million in non-equity incentive plan compensation, and $2.6 million change in pension value and non-qualified deferred compensation earnings.

So somehow a "tough 2011" for Merck's stockholders (Merck's stock price rose a mere 3.9%, from 36.29 to 37.70 through 2011) resulted in a cornucopia of riches for Mr Frazier. So rather than being rewarded for "maximizing shareholder value," (see post here) maybe Mr Frazier was rewarded for, as Ms Prakash put it, "burying monumental corporate failures at Merck."

Here is the latest version of how top health care organizational insiders manage to make even more money no matter what, in this case, no matter what happens to the fortunes of the nominal owners of the company, no matter what happens to the company's once proud reputation, and particularly no matter what happened to the patients unfortunate enough to suffer adverse effects from its drug.

We will not be able to truly reform health care, to really improve outcomes, improve access, and control costs, until we hold the leaders of health care organizations accountable.

Some of WellPoint's Owners (Stockholders) Allege Their Hired Executives Hid Political Contributions

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We have frequently had reason to question the actions of WellPoint, the second largest for-profit health insurance company/ managed care organization in the US. 

Hidden Political Contributions

The Washington Post reported yet another one,

Health insurance giant WellPoint is the latest target of an increasingly aggressive campaign to force disclosure of corporate political and lobbying expenditures, including payments to the U.S. Chamber of Commerce, which has become more active in elections over the past decade.

The WellPoint campaign, set to be formally announced Thursday by a coalition of activist investor groups, demands the resignation of two WellPoint board members, including Susan Bayh, the wife of former senator Evan Bayh (D-Ind.), for allegedly failing to oversee 'high risk political spending.'

The shareholder coalition cited WellPoint’s reluctance to answer questions about a transfer of $86 million from the health insurers trade association to the U.S. Chamber of Commerce in 2010, when the Chamber was actively opposing President Obama’s health-care overhaul. WellPoint is a member of the association, America’s Health Insurance Plans.

'This is the most egregious clandestine campaign funding we have ever seen,' said Michael Pryce-Jones of the CtW Investment Group, a labor-affiliated organization that is part of the shareholders’ coalition, referring to the payments from the trade association to the Chamber of Commerce.

However,

At WellPoint, officials dismissed the notion that the company has been secretive about its political giving. On the contrary, spokeswoman Kristin Binns said, the firm discloses a great deal on its Web site.

'WellPoint complies with all disclosure requirements under federal, state and local laws,' she said, noting that the company publishes a 'very extensive' annual report on its political contributions.

But,

That report does not include details of the sort of special payment that the shareholders coalition said WellPoint made to the health insurers association.

So, to summarize, WellPoint management is accused of spending tens of millions on political lobbying while hiding the spending from the public and from the company's nominal owners, that is, its stock-holders, by laundering it through a third party.

WellPoint's Sorry Ethical Record

This is just the latest questionable behavior by WellPoint we have discussed. Previously, we have noted incidents in which the company  ...
 

• settled a RICO (racketeer influenced corrupt organization) law-suit in California over its alleged systematic attempts to withhold payments from physicians (see 2005 post here).
• subsidiary New York Empire Blue Cross and Blue Shield misplaced a computer disc containing confidential information on 75,000 policy-holders (see 2007 story here).
• California Anthem Blue Cross subsidiary cancelled individual insurance policies after their owners made large claims (a practices sometimes called rescission).  The company was ordered to pay a million dollar fine in early 2007 for this (see post here).  A state agency charged that some of these cancellations by another WellPoint subsidiary were improper (see post here).  WellPoint was alleged to have pushed physicians to look for patients' medical problems that would allow rescission (see post here).  It turned out that California never collected the 2007 fine noted above, allegedly because the state agency feared that WellPoint had become too powerful to take on (see post here). But in 2008, WellPoint agreed to pay more fines for its rescission practices (see post here).  In 2009, WellPoint executives were defiant about their continued intention to make rescission in hearings before the US congress (see post here).
• California Blue Cross subsidiary allegedly attempted to get physicians to sign contracts whose confidentiality provisions would have prevented them from consulting lawyers about the contracts (see 2007 post here).
• formerly acclaimed CFO was fired for unclear reasons, and then allegations from numerous women of what now might be called Tiger Woods-like activities surfaced (see post here).
• announced that its investment portfolio was hardly immune from the losses prevalent in late 2008 (see post here).
• was sanctioned by the US government in early 2009 for erroneously denying coverage to senior patients who subscribed to its Medicare drug plans (see 2009 post here).
• settled charges that it had used a questionable data-base (builty by Ingenix, a subsidiary of ostensible WellPoint competitor UnitedHealth) to determine fees paid to physicians for out-of-network care (see 2009 post here). 
• violated state law more than 700 times over a three-year period by failing to pay medical claims on time and misrepresenting policy provisions to customers, according to the California health insurance commissioner (see 2010 post here).
• exposed confidential data from about 470,000 patients (see 2010 post here) and settled the resulting lawsuit in 2011 (see post here).
• fired a top executive who publicly apologized for the company's excessively high charges (see 2010 post here).
• California Anthem subsidiary was fined for systematically failing to make fair and timely payments to doctors and hospitals (see 2010 post here).

Yet despite this amazing recent record, WellPoint's top executives continue to prosper.  Earlier this month the Indianapolis Star reported that WellPoint Chair and CEO Angela,

Braly, 50, received 2011 compensation valued at $13.2 million, according to an Associated Press analysis of the Indianapolis company's annual proxy statement. That represents a 2 percent drop compared with 2010.

Braly, who has served as CEO for nearly five years, received a $1.1 million salary in 2011, a total that has stayed flat since 2008. Her compensation also included a performance-related bonus of nearly $1.9 million, stock and option awards totaling about $10 million and $216,279 in other compensation.

While her compensation dropped 2%,

WellPoint's earnings fell in the final three quarters of last year compared with 2010, capped by a 39 percent drop in the fourth quarter. In total, the insurer's earnings sank 8 percent compared with 2010.

The compensation above did not take into account that

Braly also made about $6.9 million last year mostly from previously awarded restricted stock units that had vested.

Summary

WellPoint CEO Angela Braly, like many of her fellow top hired managers of health care organizations, has become more wealthy every year despite her company's record of questionable conduct, and out of proportion to her company's financial results.

Based on illusory promises of greater efficiency that would benefit everyone, we have handed health care over to large, increasingly for-profit organizations, and we have handed control over these organizations to hired managers. We have made these managers accountable to no one, so they seem to run their organizations to benefit themselves first. Is it any surprise that organizations run to benefit top insiders do not much benefit patients' or the public's health?

Maybe the campaign by some of WellPoint's nominal owners to at least make what the company pays to influence politics transparent is a tiny first step to making the leadership of health care organizations accountable both to the organizations' owners (when they exist) and to patients and the public at large. Until they become so accountable, do not expect any improvements in health care cost, quality or access.

Allscripts shares plunge on weak outlook, board changes, unhappy customers - but mostly unhappy customers, I surmise

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Glen Tullman is CEO of the health IT seller Allscripts-Misys Healthcare.  He was an advisor to the Obama campaign on health information technology issues.

My organization had to sue his company for non-working products a few years ago (link to PDF of civil complaint) .

Apparently other customers were unhappy as well.  This from Reuters:

Allscripts shares plunge on weak outlook, board changes

Fri Apr 27, 2012 9:24am EDT

(Reuters) - Allscripts Healthcare Solutions Inc's shares plunged 42 percent in premarket trade on Friday, after the company forecast weak full-year earnings, hurt by software development costs and weaker bookings.

On Thursday, the healthcare information technology provider reported a lower-than-expected quarterly profit and also announced the resignation of its CFO, three directors and board Chairman Phil Pead.

Citigroup analyst George Hill said the results were strongly disappointing and downgraded the company's stock to "neutral" from "buy."

Hill said he was most troubled by the loss of long tenured CFO Bill Davis, who had been the public face of Allscripts to investors for many years.

"We suspect CEO Glen Tullman won a power struggle at the 11th hour leading to the board departures," Hill said.

"Too few customers are buying its products, due to lack of confidence or satisfaction," Barclays Capital analyst Lawrence Marsh wrote in a note.

Allscripts shares were trading at $9.27 in premarket trade. They had closed at $16.02 Thursday on the Nasdaq.

(Reporting by Shailesh Kuber in Bangalore; Editing by Joyjeet Das)

The statement 'too few customers are buying its products, due to lack of confidence or satisfaction', speaks volumes about the state of health IT in general in 2012.

That state includes eventual regulation after an IOM report on dubious safety, mission hostile user interfaces as identified by NIST and others that will require expensive remediation (due to the industry arrogantly ignoring this crucial issue for decades), 'glitches' due to poor or non-existent validation and quality control that will increasingly result in expensive litigation when patients are harmed, likely government investigations and clawbacks due to EHR-promoted upcoding, and an increasing awareness that many of the so-called miracle 'revolutionary' gains (as opposed to facilitation of medical practice) are largely illusory industry-promoted memes not based on robust, scientifically-generated evidence.

I'd pull out of this market - if I had any money invested in it.  I have none, and never have, because I have great lack of confidence in the industry that began when I was first exposed to it and its leaders - that being in 1992.

I note that the HITECH component of ARRA, containing incentives and penalties related to health care information technology designed to accelerate the adoption of EHR systems, was advanced largely via advice to the President on the wonders of health IT.  (I thought HITECH was a reckless, premature move destined to waste billions of dollars as did the erstwhile NPfIT in the NHS, and I still stand by that prediction.)

-- SS

4/27/12 Addendum:

EHR glitches like this and this never seem to affect patients...

-- SS

Another Legal Settlement for Tenet, Another $10 Million Plus for its CEO

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Yet another large health care organization has added to its collection of legal settlements. 

Reuters briefly noted Tenet Healthcare's latest scuffle with the law:

Tenet Healthcare Corp has agreed to pay almost $43 million to settle allegations that it overbilled the federal Medicare healthcare program for treating patients at certain rehabilitation facilities, the Justice Department said on Tuesday.

The company was accused of improperly billing Medicare between May 2005 and December 2007 for treating people at inpatient rehabilitation facilities when they did not qualify for such an admission, the Justice Department said.

Tenet agreed to $42.75 million to resolve the allegations, which were made under the U.S. False Claims Act. Medicare is the federal healthcare program for the elderly.

While this story appeared briefly and without context in a few business news outlet, it really is part of a much bigger picture.

National Medical Enterprises

Published in 2006, Maggie Mahar's Money Driven Medicine was one of the important early works on health care dysfunction (see post here, the web-site of the documentary film based on it here).  One of the striking cases it discussed was that of Nartional Medical Enterprises.  NME was charged not only with run of the mill offenses like over-billing, but more exotic ones like kidnapping patients. NME eventually settled with federal authorities in 1994 for $379 million, and pleaded guilty to a variety of charges. The results were similar to many more recent cases. No one went to jail, and the CEO walked away with a golden parachute.  Despite the seriousness of the offenses, NME did not go out of business.  It simply changed its name - to Tenet Healthcare.

Legal Problems in the 21st Century

The "new" Tenet continued to have legal issues.  These included a $395 million settlement of the Redding Medical Center unnecessary heart surgery scandal in 2004 (look here), and a $21 million settlement of US government charges of kickbacks (look here), a $7 million settlement with the government of Florida of charges of fraudulent billing (look here), and a $900 million settlement of federal over-billing complaints (look here, and see our post here), all in 2006.  There was an apparent lull, and then in 2011 the company settled a class action suit brought after the deaths of 34 patients in a Tenet facility in New Orleans after Hurricane Katrina (see Bloomberg story here.)

Again, while this substantial string of settlements suggest a pattern of repeated misbehavior, as in many other legal resolutions in health care (look here), the cost of financial penalties was diffused across the organization.  No individuals seemed to suffer any negative consequences from any of these episodes.

No Consequences for Hired Managers

Instead, despite this evidence of repeated misbehavior, now extending over nearly 20 years and across two centuries, the top hired leaders of Tenet continued to flourish.  Earlier this month Becker's Hospital Review announced the compensation received by Tenet's CEO in 2011:

Total compensation for Trevor Fetter, president and CEO of Dallas-based Tenet Healthcare, dropped 12 percent from 2010 to $10.74 million in 2011, according to documents from the U.S. Securities and Exchange Commission.

Mr. Fetter's base salary in fiscal year 2011 was $1.08 million, the same as the previous two years. He received $4.88 million in stock awards, $2.67 million in non-equity incentive plan compensation and $1.93 million of accumulated benefits under his supplemental executive retirement plan. Mr. Fetter also received more than $142,000 for personal use of Tenet's aircraft.

Despite the small dip last year, Mr Fetter's total compensation has generally increased  over the years, from $6.12 million in 2003 (via the LA Times), to $9.7 million in 2008 (AP via Fox News).

Summary

One would think that Tenet's record of legal trouble would have turned it into a pariah, or led to its corporate demise.  However, like many other large health care organizations, the organization has been able to shrug off evidence of a deeply flawed culture, and within such a culture, its leaders have continued to enrich themselves with seeming impunity. 

Such cases should raise many questions - Why are repeated offenses by the same well known health care organizations barely considered news?   Why do repeat offenses not generate at least increasing financial penalties?  Why do the organizations' stake-holders, particularly as represented by their boards, not show more concern?  Why has the regulation of health care organizations devolved into Kabuki theater?

So, I once again insist, to really deter bad behavior, those who authorized, directed or implemented bad behavior must be held accountable. As long as they are not, expect the bad behavior to continue. Real health care reform needs to make health care leaders accountable, and especially accountable for the bad behavior that helped make them rich.