How a Three-Word Mantra Has Undermined America’s Ability To Make Sound Healthcare Decisions

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:

...When critics with conflicts of interest are banned from the argument, the controversy vanishes.”

To produce a climate of fear you need the following elements:
  • Careful selection and omission of news (some relevant facts are shown and some are not);
  • Distortion of statistics or numbers;
  • Corruption and distortion of words or terminology according to specific goals;
  • Oversimplification of complex and multifaceted situations;

As we have seen across the media, this is a prime example of a coordinated campaign of fear!

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.

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