with apologies to Zbigniew Brzezinski

In his original article about the war on terror Brzezinski argues that the use of the term War on Terror was intended to generate a culture of fear deliberately because it “obscures reason, intensifies emotions and makes it easier for demagogic politicians to mobilize the public on behalf of the policies they want to pursue”.

Following the release of new breast cancer screening recommendations we  have just experienced an historical case of “moral panic” producing a never ending volley of denialism, distortions and abuse of expert clinical recommendations. I believe that the genesis of this abuse dates back to 1971 and that Brzezinsky’s article is a must read for anyone interested in understanding how the culture of fear helps to destroy rational discourse about healthcare reform.

A Militaristic Outlook

It has been 38 years since Richard Nixon signed the National Cancer Act and he and Senator Ted Kennedy declared the “war on cancer”. From that moment a whole set of military/religious metaphors have been used to speak of cancer and of the treatments available and even to explain mindsets of patients. These metaphors have become deeply ingrained in the national psyche. Unfortunately, “in war, truth is the first casualty,” and, as we have seen in the last 2 weeks this is particularly true when politics, emotions and science are added as a deadly mix to create an irrational discourse.

People become “victims” of cancer. The moment they are diagnosed they are told to “keep fighting this thing” and when a treatment fails doctors can say “we are going to change the nature of the fight and the nature of the battle.” In online communities people daily talk about “battling the beast”.  The metaphor of battle has also been used remarkably well to sell the simple, linear idea that cancer screening is always preventative. In military style, you discover early the enemy and “take it all out as quickly as possible”, take chemotherapy to “wipe out the cancerous cells”. In addition, advocacy organizations have in their mission to “eradicate cancer”. Just last year, the American Cancer Society’s National Cancer Legislation Advisory Committee (NCLAC) issued “Conquering Cancer: A National Battle Plan to Eradicate Cancer in Our Lifetime.” Sounds exactly like the terminology of the Bush administration when it was talking about the “war on terror” and how it would eradicate the enemy.

A Risk Averse Society

The contemporary society, suffused by TV news that bathe the entire country in a constant state of fear, violence, terrorism, alien invasion, shrinking opportunities, financial collapse and unsafe future in general has become incredibly risk-averse. It certainly looks like everything is done to raise certain fears and to limit others.

In health care the risk aversion is even higher. The real risks of malpractice litigation have transformed the practice of medicine and introduced an element of defensive medicine in the entire continuum of care.  Health communication, profoundly transformed by the introduction of DTC, talks about side effects and risks of medications. Important studies done over the last 20 years have defined many system dysfunctions and shown that these dysfunctions can cause many unnecessary deaths. TV reporters have developed the habit of reporting medical news with an advocacy slant instead of reporting and explaining new scientific discoveries.

A Culture of Fear

People have always been terrified by cancer. Until recently many would refer to it as “the big C”. The advent of the Internet online communities changed that and archives of the oldest groups have many references to friends, co-workers and family members still talking about the big C. With the advent of screening tools, professional & advocacy organizations took on the mantra that screening was clearly efficacious and reduced the risk of dying from cancer. Media were used to promote this simple linear message. How could anyone not react positively to “I’m alive because mammography discovered my cancer early” or to “it is proven that early screening saves lives”?

The screening procedures started generating very significant income for many professional people and advocacy organizations started receiving consistent monetary support from the manufacturers of screening equipment. Just think that the latest recommendations show that over 19,000 mammograms are necessary to save a single life. How does that number translate in $? With an average cost of $500/mammogram, it will cost up to an aggregate $9,500,000 to radiologists for every 1900 women who follow the new recommendations. Don’t you think this may be an incentive by all the professional societies of radiologists and breast imaging specialists to come out swinging against the new recommendations? Is it any surprise that Dr W. Phil Evans, president of the Society of Breast Imaging said in a statement ”the USPSTF recommendations are a step backward and represent a significant harm to women’s health?”

As Gary Schwitzer Adriane Fugh-Berman and Alicia Bell said:

Lies, Damn Lies and Statistics

Americans are great users of statistics, as demonstrated by their deep knowledge of batting, fielding and pitching stats. They also use statistics to limit risk, a fundamental activity in  risk-averse health care system where perceived mistakes can easily cost a fortune. With the new emphasis on comparative effectiveness, data collection and statistical analysis should also help us build a better healthcare system where decisions will be based on evidence-based medicine.

Unfortunately, politicians have become grand masters in the use of statistics as a tool to generate instant emotional reactions from the people. The last 6 months have demonstrated how these politicians can manipulate numbers in order to achieve a high level of fear among their target audience. The least educated the target audience, the higher the impact of the manipulation using statistical data. And so the debate about tools and methodologies necessary to advance the science of evidence-based medicine devolved into the infamous “death panels speeches” instead of explaining the scientific basis of success stories from well-know integrated healthcare systems such as Intermountain or Kaiser Permanente.

The issue is of course the general lack of statistical literacy, as we wrote in the e-patients blog here and there. As described therein

“Statistical literacy is a necessary precondition for an educated citizenship in a technological democracy. Understanding risks and asking critical questions can also shape the emotional climate in a society so that hopes and anxieties are no longer as easily manipulated from outside and citizens can develop a better-informed and more relaxed attitude toward their health.”

Fran Visco, President of the National Breast Cancer Coalition (NBCC), testified last month, “there are too many unfortunate examples of policies, messaging and beliefs that have taken hold while there was, in fact, no real evidence to support them and the misuse of statistics by opponents of healthcare reform.

More is always better

There is a deeply entrenched belief in the public that more medical care means better medical care. Once again news reports often tout the latest medical tests and often refer to them as breakthroughs, while the published data is based upon preliminary accounts of studies. The pharmaceutical industry provides its own world of often misleading advertising and has been shown to help produce biased studies that become part of the new standard of care. The discussion about healthcare reform has shown that the incentives for doctors to provide more care are pervasive. Most doctors are paid more only when we do more; and all fear malpractice, where errors of omission pose a greater risk than errors of commission. Imaging centers depend upon a continued flow of patients. The profits of device manufacturers depend upon continued sales. And the result of all this? A poll published in USA Today last week showed that

• 76% disagree with the new recommendations,
• 76% believe the panel made their recommendations based on cost,
• 40% believe the chance of developing breast cancer between age 40 and 50 between 20% and 50% (the real number is 1.4%).

Older studies have shown that women are aware of false positives and seem to view them as an acceptable consequence of screening mammography. In contrast, most women are unaware that screening can detect cancers that may never progress but feel that such information would be relevant in helping them male a choice. As Elliot Fisher wrote in the NY Times in 2003 in “More Medicine Is Not Better Medicine”:

Patients should receive accurate and balanced information on the benefits and risks of the medical choices they face. They also need much better information about the organizations where they receive care? not only about quality, safety and costs but also about incentives. How are doctors paid? How are hospital and health plan executives rewarded? What are their relationships to drug and device manufacturers?

That certainly fits squarely into our vision of participatory medicine, where the patient is no longer seen first as a source of income but as an equal partner in the entire continuum of care.

*  The phrase “moral panic” has been used to describe a widespread, irrational scare brought about by a lack of scientific or general education among the public, intrinsic human biases in the assessment of risk, a lack of rational thinking, misinformation, and giving too much weight to rumor.

Cheryl Greene is third from the left in the banner at top of this blog. She’s a long-time friend of our founder “Doc Tom” Ferguson, a board member of the Society for Participatory Medicine, executive producer of DrGreene.com (AMA: “the pioneer physician web site on the Internet”), and oh yeah, wife of Alan Greene MD.  And a heck of an e-patient, starting ten years before I ever had a CAT scan.

This stuff matters. These are stories of real lives facing lethal threats. As you read this, try to immerse yourself in the experience of someone who tried for 15 years to get pregnant, gave birth, faced a magnificent and much-longed-for future, and was suddenly told she had months to live.

This is real. And now, like many e-patients, she’s paying it forward.

Cheryl has just passed a phenomenal milestone. Here’s her story, cross-posted from DrGreene.com last month.

___________

This September8, I went to my doctor for my annual physical. I’m very diligent about getting my regular checkup because I have a history…

On March 22, 1996 I was diagnosed with stage three inflammatory breast cancer and this doctor, my gynecologist, has been with me the entire time – she was my doctor even before the diagnosis, back when I was struggling with infertility and trying to have a baby. She was the very person who diagnosed the breast cancer. She is a phenomenal physician and a very trusted advisor, and now she is a friend.

And this year, my doctor, my friend, looked at my charts and my paperwork, then turned to me and said some of the most beautiful words I’ve ever heard: “We can now call you cured.”

My breast cancer is gone. Done. Over. Nonexistent. We don’t have to use words like “remission” or “no evidence of disease” or talk about a “probability of recurrence.” This cancer that almost took me away from my children and my husband is truly cured. And just as I remember that day in 1996 when this same woman told me I had a deadly form of breast cancer, I will forever remember the day she told me I was cured.

I want to tell my story publicly for a number of reasons.

• First, my diagnosis of breast cancer was one of the reasons Dr. Greene and I changed our lifestyles and dedicated ourselves to sharing health information via DrGreene.com.
• Second, my experience as a cancer patient taught me important lessons about how patients need to participate in their own healthcare.
• And third, because I want to spread the word that people can live through a fatal diagnosis, even when the odds seem overwhelming.

My doctor told me that when she talks to other women with breast cancer, she calls me her poster child. What I had was supposed to be fatal, and if I can beat that cancer, others can, too.

Getting the Diagnosis: All You Hear is “Cancer”

I tried for 15 years to get pregnant, and when I was told that we should prepare to welcome a baby boy, I was determined to do everything right. I was prepared for the challenges of breastfeeding, but it turns out that my son and I were the perfect nursing pair. He did a great job of latching on and drinking, and I did a great job of producing “liquid gold.”

Then I developed a breast infection. Many nursing women have them – painful, but no big deal. I felt a lump that seemed like a clogged milk duct. But when the infection went away, the lump stayed, so I went back to the doctor.

The doctor came in and examined me. My son, then 9 months, was on my lap, and she laid one hand on my breast. Then she said abruptly, “Ok, you can get up now,” and started ordering tests. Later she told me she knew what the lump was as soon as she touched me.

I was very lucky. From the time I had the breast infection to the time I had the definitive diagnosis was six weeks. Breast cancers in breastfeeding women are rarely diagnosed this quickly because the breasts are so lumpy when you’re nursing.

But when the surgeon came in and told me I had breast cancer and I had to stop nursing, all I heard was, “YOU HAVE TO STOP NURSING.” I didn’t listen to the details about how serious this cancer was.

When you’re diagnosed with something that’s really devastating, there’s only so much you can hear. For me it was that I couldn’t breastfeed any more. All I could think of was, “How will I feed my baby?”

A couple of months later, I sat in my oncologist’s office and received more bad news. He was talking about treatment and told me I had only months to live. But before he told me my prognosis, he told me, “YOU HAVE TO HAVE REALLY STRONG CHEMOTHERAPY AND YOU ARE GOING TO LOSE YOUR HAIR.” That’s all I heard.

If you are close to someone who has just received very tough news, she may not realize what the actual news is yet. One of the best gifts you can give this person, besides just being there, is to accompany her to the doctors’ offices and write down everything the doctors and nurses communicate. Then give the patient some time to digest the big news and schedule a quiet time to go over the other details. This is a very vital service a caregiver can provide for a patient in need.

Getting Treatment: How I Became an e-Patient

When I started treatment, my goal was to make sure the medical staff thought of me as the perfect patient. I was going to do exactly what they said to do and follow all the rules – and I was going to be happy about it.

The first six or seven months, that was the way I operated. I went through chemotherapy and a lumpectomy. At one point the team decided I should have a port implanted in my chest so the drugs could be administered without needles in the arm.

I preferred to undergo the surgery under conscious sedation to implant the port because I didn’t seem to recover as quickly when I was fully sedated for a surgery. The anesthesiologist was someone I knew, and we were talking before the surgery. Then they put the drape up between my face and the surgical field so I couldn’t see where they would be cutting. I was still very aware of what was going on even though I couldn’t see it or (theoretically) feel the surgery. I heard the anesthesiologist say, “Ok now – no whining.” I steeled myself, “I’m going to be good and I’m going to be strong and I’m not going to whine.”

But the surgery was not what I expected at all. During one part of the procedure, when the surgeon was using what seemed like a hammer and chisel to pound the port in place inside my chest, I didn’t think I could take it. I was trying so hard to be strong, but it was awful and I felt like passing out. But I didn’t whine.

After the procedure, I told the anesthesiologist how hard it had been. And his face contorted and turned white. “Why didn’t you tell me?” he said, upset. “It’s my job to make sure you’re comfortable!”

“But you said, no whining,” I replied.

I was shocked when he said, “But I was talking to one of the nurses.”

Light bulbs went off. Right then I realized that I was the only one in the room who had information about how I was feeling, and it was my job to communicate that. I needed to stop being a compliant, non-complaining patient. I needed to speak up and share the information about what was going on inside my body with the rest of the people who were working with me to try to fix it.

In the course of the next six to seven months, I completely changed how I interacted. I learned how to give myself a shot I had to take daily so I didn’t have to wait on a nurse or get an appointment. I worked with my doctor on a daily plan for my medication, which needed to be adjusted regularly when we were trying to figure out what would work. I had gotten to the place where I knew what I needed. My doctor was reviewing my suggestions, but I was making decisions. I credit that engaged, that empowered, behavior as one of the reasons I was cured.

Enduring the Journey, Finding the Cure

I started off with the strongest Western medicine available, and at the end of my treatment, I was in a very vulnerable position. The cancer was gone, but the first year after treatment has the highest risk of recurrence. And cancer that comes back during this time usually spreads very quickly and is very resistant to more treatment.

I decided I wanted to be as involved as I could in attacking this thing. I found about a trial at Stanford that the coordinators were having trouble finding participants that fit the critera. You had to have been diagnosed with stage three or stage four breast cancer, and you had to be done with treatment with no evidence of the disease. The hard truth is that they couldn’t find many eligible patients because there weren’t many of us who were surviving this disease. When I was first diagnosed Alan tried to find people online with my cancer, and he couldn’t find anybody. He just kept finding memorials for people.

So I enrolled in the FGN1 trial at Stanford. I knew I had a 50/50 chance at getting the drug, but either way, I was determined to do it. Either I got the drug, and perhaps got help, or I didn’t and hopefully helped others.

The trial was an 18-month chemotherapy treatment, but I knew right off that I was getting the actual drug and not a placebo because I had to be hospitalized because of the side effects. They adjusted my dose a couple of times because I was so sick with the side effects, and they actually asked me if I wanted to drop out. But I wound up completing the trial because I wanted to help find a treatment that would help more people than the conventional chemo.

After the trial, the doctors told me that of the six women at Stanford who were on the trial, several on the placebo had recurred and one had died. At that time the cancer had not come back in those of us who received the actual drug. I haven’t been able to track down any of the other women in the study, soI don’t have any long-term data. Unfortunately the side effects turned out to be too serious to take the drug to market, but I’m grateful I persevered and got the full treatment.

There’s no doubt that the chemotherapy is one of the major reasons I’m here to tell my story today, but I’m fully convinced that my mindset played just as significant a role. When I was diagnosed, I didn’t absorb their message that I was going to die. I heard what they were saying, but I was convinced that the fatal diagnosis didn’t really apply to me. At the same time, I can remember realizing that I needed to live every moment to the fullest.

______

Humans are capable of two diametrically opposed ideas at the same time. I remember one morning in particular waking up and feeling totally exhausted. I felt tired on the cellular level, and all I wanted to do was just turn over and go back to sleep. But I said to myself, “You may never feel better than you do right now, so get up and get dressed and go play with that baby.” I remember feeling like I didn’t really accept this diagnosis and that I was going to make it, yet coming to the conclusion that I needed to live every moment because they might not come again.

That combination really served me well. And the take home lesson for me was that it is really important to live today and not miss today. I really learned to take advantage of opportunities… to seize the day.

What are you doing today to live this day to the fullest?

Life after Breast Cancer

Although it was just a couple of weeks ago when my doctor looked me in the eye and called me cured of the breast cancer that had almost ended my life, I’ve actually considered myself free from cancer for quite some time. When I was diagnosed, Alan and I took a serious look at our lifestyles and our environment and made significant changes that last through today. We share many of our insights on the benefits of healthy living here on DrGreene.com, and we’ve come to embrace our good health and to enjoy our good days.

I fully believe that some of the healthiest people in the world are those who are living with a chronic disease and managing it well. Those of us who have gone through a life-changing threat to our existence have sought out information about the world we live in, the food we eat, the air we breathe… we want to do anything and everything we can to regain and maintain our health.

People with diabetes who watch what they’re eating and control their disease with diet and exercise are healthier than most disease-free folks who eat junk food and spend their evenings on the couch. People with asthma who avoid second-hand smoke are exposed to fewer toxins. We survivors of diseases just seem to be more aware of what keeps us healthy and what will make us sick because if we don’t pay attention, the repercussions could be very serious.

____________

Some days I’m really angry about what cancer stole from me. I was breastfeeding one day and two months later I’m in full menopause with hot flashes because of the chemotherapy. It was insult to injury because I hoped to have another child at that point. During my treatment I opted to do everything I could to keep my breasts because I fully believed I would nurse again.

But the anger about the cancer doesn’t come close to the happiness about the cure. I was diagnosed with stage three inflammatory breast cancer. The chances that I would survive were very, very small. But survive I did, and, as another cancer patient once said to me, “Today is a great day to be alive.”

—–

As empowered, engaged patients we have a responsibility to evaluate the articles we read. A case in point is this week’s Associated Press article Any Spread Of Breast Cancer Raises Risk Of Return. It’s about a paper in this week’s New England Journal of Medicine that found a 50% increase in the chance of cancer recurring, and quotes an expert as saying

“I think it will influence treatment. If we’re considering treating the patient, we probably should.”

Can you spot the flaw in that reasoning, if all you have is that number? That’s all the article reported, and that’s a problem.

The problem is relative risk reduction. As we discussed last November in Making sense of health statistics, relative risk is an unsound basis for policy decisions, because you can’t tell the actual size of the impact. That affects you as a patient and you as a citizen thinking about policy.

In the study, did the 50% change mean represent a change from 200 patients per thousand to 300 per thousand, or from 2 per thousand to 3 per thousand? (Specifically, if we spend a zillion dollars based on this result, will we affect 1/1oth of the US population, or 1/1,000th?

Think about it for your own body. Your health provider suggests a treatment and says it’ll reduce your chance of a problem by 35%. (That’s the number commonly cited for statins like Lipitor.) Sounds impressive, right? But that’s a relative risk number. The raw data showed that among the general population, 1.59% had a coronary event, and among Lipitor users, 1.02% had one anyway. So for the $25 billion we spend on Lipitor in the US, we affect one patient in 200.

So now imagine your provider says “There’s a one in 200 chance this prescription will make a difference for you. Want it?”

I think there are two levels of concern for us as patients engaged in the new world of healthcare:

• For you personally, ask your providers for the absolute numbers. They may need to go digging, because they themselves may not have been given the numbers. But you have every right to know, eh?
• At a national level, the same thinking must be applied to policy decisions.

I wrote a note to the author of the AP article asking if she can get the absolute numbers. (As usual, the original article in NEJM isn’t open for us to evaluate.)

Related resources:

• Health News Review – a superb resource for understanding how to evaluate health news. (Thanks to Ted Eytan for the tip last year.)
• Evidence-based medicine – my post last November citing the Lipitor numbers, as reported in Andy Kessler’s book The End of Medicine.

I know a 15-year breast cancer survivor who was just diagnosed with a recurrence in the same breast. She originally had a lumpectomy and radiation, and it seemed to be over. With a mastectomy looming in the near future, and reconstructive plastic surgery, she said she could handle it, when I asked her. She was okay.

Welcome to the new normal.

Handle it? As though this is normal? This is a major stressor. Yet over and over, I hear cancer survivors dealing with recurrences – or even with their original diagnoses – and proudly managing the stress. In fact, the only people who seem to acknowedge the stress are the surviving spouses.

We are not made to manage the myriad stressors that modern life brings. We have evolved simply: fight or flight. Not “I can manage to work during chemo.” There is something terribly wrong here.

We now assume that it is normal to work full-time while raising children, and to take on more and more responsibilities with no respite. I mentioned this to an early-30′s acquaintance – that it isn’t normal to have to cope with 50 and 60 hour work weeks at top pace, with two or three young children in daycare and a lot of commuting, all at once. She was surprised – it had literally never occurred to her that this wasn’t a normal state of affairs. Most women in her age group do this, some better than others.

So add cancer – or any major illness – into the mix. Why do we think that we can and must manage this as well? That it speaks badly of us to be terrified and panicked… and tired. Truly tired. That this is a normal way of life.

I am concerned that we, as a nation, as people, don’t get it. We don’t realize that this is aberrant in situation, in level, as a way of life. In the USA we have no safety net for this kind of life-altering experience. We often have no way – even with sufficient money – to take time off… because we can lose our health insurance. We have no choice but to ignore the obvious stress and exhaustion and keep on keeping on. This is not healthy. And yet… I know so many women (and men) who think stress is normal, acceptable. We aren’t made for it, but we have few choices.

So yes, my friend is handling her breast cancer surgery well. But deep inside I think this is symptomatic of our crazy belief as to what is normal.

A key sentence in Chapter 5 is “One of the great benefits of patient-initiated research is its speed.” It’s spoken by Norman Scherzer, who was mentioned in our April 3 post A wonderful story of participatory medicine, and describes how when the medical industry falls short, e-patients can step in and gather vitally important data.

Here is another live example:

This survey and appeal are authored by Judy Feder, an e-patient who was a guest author here in March:

Following my amazing experience with Her2 testing and Herceptin, as chronicled in my guest post Patient Community Knowledge Saves a Life, I’ve been motivated and encouraged to take patient power into our own hands and create a registry of other patients who may have experienced the test I had.

The timing is exquisite, because the Journal of Clinical Oncology in its wisdom JUST published a review of all the literature on Her2 serum testing and concluded there is “insufficient evidence” for its use in “routine management.” (Just the kind of words to get an e-patient all fired up.)

They want data? Let’s give it to them!

I’ve created an online survey, and would love to get it distributed virally through the breast cancer community.”

Breast cancer patients, please take Judy’s survey (click here). And cross-post this freely on other blogs!

My quest for a second qualified opinion on an abnormal mammogram (microcalcifications) began in October, Breast Cancer Awareness Month. Two days before the end of the year, a sharp surgical resident put an end to the spin. The solution was simple – and not high tech. She got on the phone and spoke to the various physicians involved. She was proactive where the system was flawed or obviously broken. Most important, she listened to me, the patient.

First, she had the radiologists clarify their thinking. The first radiologist agreed there were no significant changes in microcalcifications between the ’07 and ’08 mammograms. Nonetheless, he chose a more conservative BIRAD 3 (indefinite) designation and opted for a closer follow up (six months) – which is fine with me. The second radiologist, more of a “niche” specialist and therefore a “qualified second opinion,” opted for the BIRAD 2 (benign) category with, he said, follow up recommended at one year.

Despite being guaranteed payment for his services, the specialist refused to write an official report downgrading the rating, so the resident had the hospital radiologist read the films. The latter agreed that the calcifications were benign appearing and a biopsy was unwarranted. Unbidden, the resident telephoned my primary care provider and explained the situation. Thus one physician in the system remains guardian of my health.

Having herself witnessed instances of women slipping through the cracks, arriving at the clinic too late for meaningful treatment, the resident did not belittle my concerns or emphasis on early detection. The criterion for the biopsy remained patient comfort, she stressed. Unlike the radiologists, she responded to my question about the chances of malignancy.  (More like 1:10 or 1:100?) Was the surgeon humoring me by offering the biopsy option, or was this a science-based decision whereupon we could agree what constituted acceptable risk?

The resident heeded my request for e-mail communication, saving everyone phenomenal amounts of time. The next day, she locked down follow-up appointments at both ends:  radiology in six months (three after the quest for clarification), and the surgery clinic for explanation and clarification. At my request, she got me the latest possible appointment at the surgery clinic so I do not miss (yet) another day’s work.

The visit to the surgery clinic cost me 3 1/2 hours plus one day of lost work.

The follow up took minutes to resolve via e-mail.

Despite her obvious smarts and grasp of her job, the resident’s powers were limited. She could not explain why the second radiologist refused to report in writing, but she did back-stop him with their own experts. Nor did she did leave follow-up solely to the office of Radiologist No. 1. When asked which radiology practice was best for my case, she stated that the clinic had never experienced problems with the first office (a deep seated concern given my daughter’s history with this office). As for the expert refusing to put the second opinion in writing, she assured me that the record of the phone conversation in my file would suffice as confirmation of the diagnosis.

I will not see the resident again because she is rotating to the next service.  I wish her the best in her career, which, one assumes, will be radically altered through health care reform and new HIT (health information technology). Her actions did nothing to change my opinion of female physicians as being more collegial, less arrogant and more willing to correct error. She had, I felt, a genuine compassion for women’s fears about breast cancer. Nor did it change my opinion of the generation gap in medicine: Younger, she was at ease with the not-so-new technology of e-mail. Plus I admire her courage. She (or her boss) was willing to risk transparency in the interests of efficiency and human decency.

Subsequent research revealed that the second radiology practice has become, as one person said, “the only game in town” by securing a contract with a major hospital; its partners are more than satisfied with remuneration. In contrast, the referring clinic is known as a mill, staffed by part time, uncommitted physicians.

I can not help thinking that the rookie, being the least invested in the medical business, was the one who got things done. Nor can I help noting that the male specialists at opposite ends of the class spectrum in medicine – the public clinic and the lucrative radiology practice – were equally intolerant, indifferent to best practices. Tell me that gender dynamics are not defining in medicine, that gender bias is not a part of the health care system that the Obama administration should pledge to fix.  Tell me that women are not experiencing a higher toll from cancer due to this intolerance.

One has to wonder what would have happened if the physicians in question had heeded my request at the outset. There is no billing code for communication, at least one lucrative enough to make communication worthwhile. Therefore physicians’ anger and resentment at “special requests” – or best practices, even.

Coincidentally, the county hospital in this rural agricultural area has one of the top-ranked surgical residency programs in the country, even as the hospital bleeds red ink. Someone, somewhere, is doing something right, and it is not because of high tech.

Previously on e-Patients.net I recounted the crazy-making quest for a second opinion on an abnormal mammogram (microcalicifications) as per the advice of New York Times health columnist Jane E. Brody, a breast cancer survivor.  The gynecologist who ordered the mammogram refused to authorize a second opinion, deferring to the radiologist, who referred me back to the clinic and so on and so forth.

My primary care provider carefully reviewed the films and reports (sans compensation).  She thought a biopsy might be the safe thing.  She was not the referring entity, however.  The clinic was!#$^%$#@

I started over, skipping a few bases, securing a first-rate surgeon at the county hospital as the new referral entity.  In a futile attempt to waste no one’s time except my own, I hand-carried a disc of the imaging studies to the appointment.

Right?

Wrong!

The resident informed me that they could not bring the films up on their system.  (“Oh yeah, that’s right” says the deskperson at Radiology Practice No. 1.  “County can’t read our films.”)  @#%#$

This was an abnormal mammogram, the resident confirmed, which made me feel slightly less inept.  Nonetheless, it was downhill from there.

Why are you here? queried the surgeon.

For a second opinion.

A what?

Well, I wasn’t sure I said, showing them the Brody article, but I thought second opinion meant I wanted another (more expert?) radiologist to read the films and review the recommendation for followup. 

The surgeon referred me to a radiology practice affiliated with a large hospital, the only one in town to offer stereotactic breast biopsy.

After the obligatory miscommunication, the films from Radiology Practice No. 1 actually arrived at Radiology Practice No. 2.  The radiologist would read the films presently, the scheduler promised.   He would not write a report, however; insurance would not cover it.  I would know his opinion by either thumbs up (biopsy appointment) or not.  No reasoning on the decision would be available to me.

Silly me.  I thought that breast cancer is best caught early and a second opinion is integral to Patient’s Rights.  Inexplicably, confirmation that the cancer detection program would pay for a second opinion (California law) carried no weight whatsoever with either the clinic, R.P. No.1 or R.P. No. 2.

It was if I had never spoken.

You, Jane Brody and Sheryl Crow

“No one has ever asked for a second opinion before,” said the clinical coordinator of the cancer detection program.  She did not urge me to let up, however.  On the contrary, like every female health care professional I know, she had a story:  a sister-in-law who died from cancer after a physician ignored repeated complaints about vaginal bleeding.   (Nary an apology when she died, as this story always goes.)   As I write, the same sickening scenario:    A sixty-two-year-old breast cancer survivor, aunt of a colleague, complains to her doctor of bone pain.  He dismisses the pain as signs of old age — until it turns out to be metastatic cancer, in which case he is perfectly happy to support the murderous double onslaught of radiation and chemotherapy.  What should she do?

While they may share awareness if not rage over the unique combination of neglect/arrogance that marks the treatment of women in the U.S. health care system, Jane E. Brody, Sheryl Crow and readers of The New York Times apparently know how to secure a second opinion, women in  rural counties, not.

The call came confirming an appointment for a stereotactic needle biopsy.   The appointment was a total disaster, the next scene, almost too embarrassing to write.

The Knock-out Punch

As she ushered me into the exam room, the nurse handed me a brochure describing the procedure.  (While useful, the information would have been even more useful had I had time to read it.)

“The doctor will talk to you first.”

Hunched over on a stool, miserably eyeing the gray exam table with the opening for my boob to hang through while it was penetrated by a needle and who knows what else, I waited.

Not for long.

The radiologist stormed in.  Towering over me, technician at his side, he said he could not understand why a biopsy had been ordered, nor could his colleague who reviewed the films before him.  He had seen hundreds of films like this.  Unlike Radiologist No. 1, his advice would be to return in a year, not six months.

When asked the obvious — What were the chances of malignancy on microcalcifications of this nature? –  he blasted his way through the legal disclaimer language of Statistics 101, whacking away at the difference between correlation and causality, deriding me and my primary care provider.  Physicians could disagree blah blah blah which is why second opinions often cause confusion blah blah blah.  By the way, women with this condition were twice as likely to develop breast cancer as women without. (I think he said this, but by then I was too mortified to think very well.  Mainly I feeling gratefulthat I had my clothes on.)

Pow!  Pow!  Pow!

The decision to biopsy was ultimately determined by the comfort level of the patient, he explained  (i.e., not by science or evidence-based medicine), subtle insult.  (This position, incidentally, absolves both the physician and the insurance company of liability).   If that’s what I wanted, they could even send the films to Big Name Medical Center for review.  He personally had the qualifications to work at Big Name Medical Center, but no mind.   My choice.

I was definitely not feeling Tranquilidad Mental, the Peace of Mind advertised in their brochure.

Without getting too tetchy, I explained:  I was an alumna of Big Name University; their children’s hospital had screwed up Big Time on my daughter’s sarcoma case (through arrogance of precisely this sort); and when I chose a referral site, it was by individual or departmental expertise, not Big Name.

What did I want to do? he demanded.  We were now Wasting the Physician’s Time.

Without report in hand or time to consider the information, hard to say, buddy!

Could I please have a written report of their findings?

No.

Let me get this straight:  Insurance would pay for an unnecessary, expensive, time consuming, painful and invasive procedure to reassure a (silly female) patient about breast cancer, but it would not support a written report on findings?

Not putting their opinion in writing was a favor to me, he insisted.  His office would get stiffed by the insurance company on a written second opinion, meaning they would have to bill the patient.  (Apparently the message that the cancer detection program would support a second opinion was beneath his or someone’s notice.  Whatever.  He knew his billing codes.)

In the face of such certitude –  having received my second opinion, I believed, albeit not in writing — I declined the procedure.  The doctor whisked himself out the door, his body language shouting “Idiot! Fool!”  He had (real) patients to attend to.

The room bereft of all that energy, the technician gently explained that microcalcifications generally fall into three categories:  malignant, indeterminate and not to worry (I am paraphrasing.)  My pattern, the “teacup,” Not To Worry.   For some reason, however, I was unable to pry it out of a doctor, certainly not one who would commit to writing (or even pick up a telephone).

Backtracking

If I, a scholar and patient-advocate, could not navigate this system, I explained to the technician and the office manager, what hope was there for a less educated (and persistent) patient?  Where had I gone wrong?

The glitch, in their opinion, came from the surgeon at the county hospital:  He had written an order for a biopsy, not a second opinion.  Without a re-script from the surgeon, their office could not provide a report on findings.  @##@$%^&  (The surgeon, of course, was unavailable minus an act of God.)

Neither woman was dismissive of my concerns about the cluster f*** that is the medical referral system or  the lack of accountability therein.  Both were acutely aware of the propensity of the U.S. healthcare system to kill women with suspected cancers.  (“Or even a urinary tract infection,” muttered the technician.)  Both were totally supportive of the physician’s fears of lawsuit.  (“All it takes is one,” the office manager pointed out.)  Both trusted their boss’s judgment, even as they tacitly acknowledged the dynamics that had me on the ropes, in search of the nearest exit.

Jane E. Brody, Help!

Pass the Valium!  Not for a bad outcome (at least I do not think this was a bad outcome).  Nor for lack of a viable second opinion (I hoped).  But for sheer embarrassment.  Why was I sitting there like a fool, brochure in hand, wasting so many people’s time?

In the case of microcalcifications, what constitutes a second opinion, or a “qualified” second opinion?  Who knows, and who pays?

This is what I (or the surgeon at the county hospital) inadvertently did right.  The second opinion was not an expert opinion per se, meaning review by specialists at tertiary care center, but a “qualified opinion” rendered by radiologists who specialize solely in breast health, meaning they read more mammograms a year and  offer more specialized procedures than does R.P. No. 1.  

For  women actually trying to obtain a second opinion on a mammogram without dying of cancer (or embarrassment), the word would be alignment.

You and Your Billing Code

As indicated in recent and somewhat bitter controversies about information technology (IT) on The Health Care Blog, health care reform in its specifics is formulated from the standpoint of the physician-insurance nexus.  Thus disputes tend to revolve primarily (or only) around billing, i.e., relative profit or loss among the various contenders.  Protests aside, the patient is at best an afterthought –  the Residual Payer, as one physician kindly informed me — which is precisely how much weight the patient (or health) carries in these discussions.

Physician practice is aligned first and foremost with insurance billing codes, not best practices or Patient’s Rights.  In my case, there was no billing code for a written second opinion.  If there was such a code, no one was familiar with it.  

The insurance industry has a stranglehold on your physician.  The point at which physician and insurance interests overlap is avoidance of accountability-transparency to the patient or public.  Ergo the tough response when physicians are queried about best practices (i.e. second opinions), followed shortly thereafter by the Disappearing Act.

If your physician’s language is overly obscure, if he or she dazzles you with the basics of statistics, if he seems resigned or angry at you for requesting the wrong thing (a second opinion), if the mostly female staff seems tight lipped, it is because physicians are trying to please two masters — the insurance company and the patient.  In truth, they respond only to one.

Apologies to Radiologist No. 1.  His recommendations were conservative in favor of my well being, or at least I think so.  The problem was his unwillingness to address discrepancies raised by the Brody article (were we talking about some different pattern of calcifications?) or to support a second opinion.  Because he could not bill for the time wasted on talk (clarification), my primary care provider and other health care professionals ended up picking up the slack.  As for the referral, i.e.,  the “qualified” second opinion with which physicians claim to be perfectly at ease, all he had to do was sit back and let the patient get lost in the spin.

Align Yourself

The next time you get flack over a request for a second opinion on a suspected cancer, you might inquire if billing codes are aligned with best practices.  If not, what does your physician plan to do about it?  (Answer:  bill you.)

Better yet, scream at a politician before the insurance industry re-hijacks health care reform.  This is not so easy to do, however.  As ACOR founder Gilles Frydman points out, the workings of the health care industry are opaque by design, meaning ordinary folks do not have a clue about where even to start.

Here are a few easy pieces.

There is movement afoot to transfer a greater piece of the “health reform pie” to primary care providers for information technology; increased compensation relative to specialists (who are not paid to talk to you); and for an expanded role in coordinating care, i.e., managing medical records so that you, too, do not get lost in the spin.

There is a Great Debate (if not envy) among physicians about parity with lawyers, meaning a lot of energy is expended in debate over billing practices for patient communication.  The Great Scourge, from the physician perspective, is e-mail.  Coincidentally, e-mail evens out the playing field, sparing the patient the emotional and financial costs of “telephone tag,” plus it forces the physician to commit to writing.  In some circles, this would be known as efficiency and accountability, a spur to good health even –  a putative goal of the Obama administration.  Many physicians rail against e-mail like it is the anti-Christ, at the same time ignoring the ridiculous waste of time and money, to say nothing of the wear and tear on the patient, that is the existing system.   Telephone tag works fine for them.    

Breast cancer is primarily a disease of older women.  Given the aging Baby Boomer population, microcalcifications will remain an area of concern in medical decision making.  Educate yourself.  Learn your referral network.  Find a doctor to trust.  The decisions can be difficult, even for specialists.

Yes, there is a new national dialogue on health care reform, but is it the right one?  Can one even locate patient interests in the scrum? 

Practically and politically, middle-level specialists, registered nurses, office managers, technicians, etc. need to speak up.  Yes, that would be primarily women, people who are actually sympathetic to fears about breast cancer, sensitive to institutional intimidation and witness to internal dysfunction.      

In particular, we need to hear from certified case managers, a class of health care professionals who are legally required to advocate for the patient, not  the insurance industry.  As I learned from my daughter’s sarcoma case, in instances of life threatening illness, CCMs are your best chance to get a complicated health care team to cohere around the interests of the patient – not those of the medical team, the hospital, or the insurance company.  Understandably, insurance companies do not broadcast their existence; some deny the patient direct access.

Conventional politics might not be the answer.  Given the industry deregulation of the Bush presidency, it is unlikely that major physician groups and professional organizations will de-align from major “stakeholders” (insurance, their payers; pharmaceutical reps, their friends) and ally themselves with patients, at least in the near future.   Nor is it likely that politicians will suddenly reframe debates on HIT (health information technology) in terms of patient interests, any more than software vendors will develop a sudden philanthropic interest in information sharing (i.e., “interoperability”) — unless they control the patent, that is.  Thus, folks lower down in the medical food chain might wish to educate themselves about e-communities and join forces in patient-centered participatory medicine.

Synergy awaits.  Masters of the billing code and referral system, CCMs are among the few health care professionals who can successfully educate and demystify the system without getting fired.  They can explain, for instance, why the patient risks humiliation when she tries to take charge of her health, and the physician can be so punitive.  

As you learn to navigate the complicated terrain of health care reform, the thought may occur that you, the patient, might be better off if Certified Case Managers, like primary care providers, were to get a more substantial piece of the health care reform pie.  If you are going to die of something dumb, at least you will have a clue as to what killed you.

As for me, I am awaiting a phone call from the surgeon.