The Costs of Knowing

The last well person 

Physician Clifton Meador, director of Tennessee’s Meharry-Vanderbilt Alliance, a cancer research and treatment institution, published an essay in 1994 in the New England Journal of Medicine called “The Last Well Person.”3 This was an account of a fictional, 53-year-old professor who taught freshman algebra at a small college in the Midwest. Although the professor had been to a lot of physicians and had been extensively evaluated, no one could find anything wrong with him. As it turned out, he was the only remaining human for whom this was true. Everyone else had been labeled or diagnosed with something or other. Meador predicted that, if physicians continue accumulating data on everyone, eventually every well person will be discovered to have something out of whack. He quoted a medical resident’s definition of a well person as “a patient who has not been completely worked up.” The last well person may not remain fictional much longer.

In 1999, Dartmouth physician Gilbert Welch described the fallout of the adoption of revised definitions for many diseases. Among these are new standards for hypertension, hypercholesterolemia, diabetes, and being overweight. The result is that 75% of the US population over the age of 17 is now labeled as diseased. Welch considers this a potentially dangerous turn. He says, “When you get to the bottom line, you find that, given these definitions, three out of four adult Americans are ‘abnormal’ or ‘diseased.’ And that’s sort of ludicrous, isn’t it?4 The extent to which new ‘patients’ would ultimately benefit from early detection and treatment of these conditions is unknown. Whether they would experience important physical or psychological harm is an open question.”5

Welch and Elliott Fisher, his research colleague, are critical of what they call “pseudo-disease”—disease that would never become apparent to a patient during his or her lifetime without a diagnostic test. An example is prostate cancer. If undiagnosed, many of these men would be unaware they had a prostate problem. However, when they are labeled as diseased, a cascade of unintended consequences can be set in motion—excessive worry and anxiety, and sometimes a sense of impending death, even if they have no symptoms and elect not to pursue treatment.

Although screening tests for certain conditions such as colon cancer can improve chances of a good outcome, many diagnostic tests and treatments are not this clear-cut. Diagnostic tests can be a slippery slope, in which one ambiguous test leads inexorably to others, until a questionably significant abnormality is found, such as a borderline biochemical condition that is not causing symptoms. “When you get into interventions for these kinds of things,” says Welch, “you’re at real risk to do harm because you’re at a point where the patient’s fine.”4

Welch and Fisher aren’t advising people to avoid doctors and tests, but that they collaborate and share decisions with their physician every step of the way and not simply pursue testing blindly.

Medical reporter Catherine Tudish has written wisely about our mindless pursuit of medical technology and testing. She says, “Less is more: The idea has inspired the Shakers, abstract painters, engineers, fashion designers, chefs, writers of haiku. It’s not a concept embraced by most people in the healthcare industry, however. When it comes to healthcare, more is more… . [T]he US can now claim more doctors and surgeries than ever before.”4

As a consequence, a colossal amount of information is generated, and patients’ charts get fatter and fatter. Without this data, many physicians believe they would be flying blind. Concealed in this information, however, is a dark side. As Fisher and Welch state in “Avoiding the Unintended Consequences of Medical Care: How Might More Be Worse?,” a seminal paper published in the Journal of the American Medical Association, “Because there are more diagnoses to treat and more treatments to provide, physicians may be more likely to make mistakes… .”6

The costs of knowing are compounded in the elderly. James S. Goodwin, a geriatrician at the University of Texas Medical Branch at Galveston, says, “Like a number of geriatricians, I have come to believe that modern medicine does not work well for old people. … What if we find pathology wherever we look? Such is the case with the very old. … [W]e demand data, the products of scientific inquiry. But data do not convey values, and the practice of medicine is also about values. Many important issues of old age cannot be measured by machines or expressed by numbers. We need to tell more stories and to think and talk to each other about what the goals of medicine are and what they should be.”7

Dying without a label 

When I was training in internal medicine, we young doctors were taught that if our patient died without a diagnosis, we had failed utterly. Not only was a label required, but the dying process had to be documented and tracked in detail. Lab tests were usually done right up to the time of death. This led to a cynical saying among us: “The patient died—but he was in electrolyte balance,” implying that one’s blood tests might be as important as life itself.

Not everyone is impressed with being properly labeled at the moment of death. I once talked with Robert Sardello, the noted Jungian psychologist and author, about his views on death. When our discussion turned to the demise of our parents, I asked him what his father died from. “He died of his death,” Sardello said flatly, without further elaboration (personal communication from R. Sardello to Larry Dossey, August 1987). For him, that said it all; no diagnostic label was required. His comment reminds me of the view of Buddhist teacher Sogyal Rinpoche: “We’ll all die successfully. Not to worry.”8

Information ambush 

In 2002, Kevin Helliker, bureau chief of the Chicago office of the Wall Street Journal, underwent a routine CT scan and inadvertently discovered he had a small aneurysm of his thoracic aorta.9 Helliker, 43, was a triathlete. He worked out an hour or more ever day, had not had a drink in 21 years or a cigarette in 15, and felt completely well. When the test results were revealed to him, he felt “ambushed.” He immediately searched for information about aortic aneurysms and was shocked by what he found. He discovered that aortic and cerebral aneurysms kill 32,000 Americans annually, making them the 13th leading cause of death. Most experts, he found, consider the number of aneurysm fatalities to be double the official number because most people die suddenly when the aneurysm ruptures and are considered to have expired from a cardiac event. At one level, Helliker knew he was lucky. His fortuitous discovery meant that he could keep an eye on the bulge in his aorta and could have it surgically repaired if it got to the danger level.

The knowledge of his bulging aorta was also freeing. Prior to its discovery, he was obsessive about his health. But, after the scan, he became more relaxed about his diet, gained a bit of weight, stopped taking vitamins, and returned to his old love affair with caffeine. “To live daily with the knowledge of death is not all bad,” he said. “It has shown me that some of what I did in the name of prevention was actually a form of cowardice, of not facing my mortality. … Then along came the aneurysm. … I no long had to be perfect… . I can’t escape death, … but it no longer has me running.”8

Another benefit from his aneurysm was the Pulitzer Prize, which was awarded in 2004 to Helliker and reporter Thomas M. Burton, who collaborated on a series of groundbreaking articles in the Wall Street Journal about diseases of the aorta, including aneurysm and dissection.

Yet there were costs of knowing. “[K]knowledge of [the aneurysm’s] existence,” he said, “also makes me hypersensitive to every twinge in my chest and leaves me constantly wondering: Am I about to die? … Suddenly, I was a Code Blue just waiting to happen.”10

Thousands of individuals have had experiences similar to Helliker’s, such as having an ultrasound test for gall bladder or kidney problems that turns up a tumor that is caught “just in time.” These stories fuel the urge of healthy people to have whole-body scans or an array of blood tests designed to look for nothing in particular—and everything.

Is it wrong to have these tests? Those who want to know, who must know, will probably be better off having these studies to assure themselves that no disease is lurking. Yet, before any test—even something as simple as a blood count or urinalysis—we should pause long enough to consider the path we are entering. Having a medical test is like walking through a one-way door; once the test result is reported, you can’t take it back but must live with its impact. This means that the next time we visit the medical lab or the x-ray department, there is always the risk that we may be about to pathologize the rest of our life. Medical information always has consequences, which may not be what we would wish. Is this a risk we are willing to take? These questions are deeply personal, and no one should answer them for us.

Medical tests are not the only window to our health. They are not even the main one. Our story—the report we give to our physician—is the most important “test,” as well as the physician’s looking, listening, poking, and probing that are part of the physical exam.

One of the most important health factors is not a test at all. Dozens of studies suggest that our opinion of our health—whether we think it is good, fair, or poor—is one of the most accurate predictors of health and longevity ever discovered.11, 12

The bottom line, however, is that no test can eradicate the uncertainty that is part of the human condition. As a reader of Helliker’s columns wrote him, “I have bad news for you and all the other health nuts. One of these days you are going to die.”10 So far, the statistics are convincing that the reader is correct—thus the aphorism, “Life is a sexually transmitted disease with 100-percent mortality.”

Informing ourselves to death 

Medical tests are only one species of information, and they raise larger questions about information in general. Clichés about information abound. Information, we hear, makes our lives healthier, longer, happier, and more interesting. Information is power, and progress depends on it. We have entered the Information Age and live in an information-based society. Biologists have discovered that we are information because that’s what’s stored in our DNA. So we are told.

But people are increasingly skeptical of this high-toned talk about information. For all its virtues, we feel as if we are drowning in the stuff, and more and more people are complaining about information overload, a term coined by Alvin Toffler in his 1970 book Future Shock.13

Try as we might, we cannot escape information. Our solitude and serenity are being eroded by cell phones, pagers, and palm devices that are increasingly intrusive—not just to ourselves, but also to anyone else within earshot in restaurants and on buses, subways, and planes. Information is getting on our nerves, and sometimes it pushes us over the edge. I recently saw a man lose control and slug a cell phone loudmouth on a commercial flight, after repeated requests to lower his voice were ignored.

A few information junkies think these problems are overrated. In May 2005, Microsoft Chairman Bill Gates told a meeting of chief executives, “[W]e are really dealing with information underload.”14 The problem, Gates said, is not excessive information but how it is sorted and managed—a dilemma, he predictably predicted, that Microsoft software would soon solve.

Information can be downright sinister, as I discovered in writing this essay. When I went searching for evidence that information overload is a problem, I resorted to one of the major sources of information, the Internet. In asking the Internet to steer me to citations showing that information can be harmful, I was essentially asking it to incriminate itself. If the Internet were human, it probably would have taken the Fifth, but it had something more insidious in mind. As if punishing me for trying to trick it, when I googled “information overload” I was swamped with over four million items. Information about information overload engulfed me. I was a victim of the Internet’s revenge, trapped in a cyberversion of the mummy’s curse. There was only one thing to do. I quickly downloaded all the citations I could and made a run for it. It was a close call, and I escaped by the skin of my teeth. So, a warning: If you enter the territory of information overload, be afraid. Be very afraid. Here be dragons, and they are not playful.

We may be morphing from the Information Age into the Useless Information Age. A movement is afoot that actually celebrates valueless facts. A Google search for “worthless trivia” and “useless knowledge” yielded two-and-a-half million items. Want an example? Know where the admonition, “Be afraid. Be very afraid,” comes from? It’s the tag line of David Cronenberg’s 1986 horror movie “The Fly,” and it also shows up in Mel Smith’s 1997 movie “Bean.” Information underload, Mr. Gates?

Neil Postman (1931-2003), who was chair of the Department of Culture and Communications at New York University for 33 years and the author of 18 books on education and the social effects of media and technology, gave a speech in 1990 to a meeting of the German Informatics Society about the problems posed by computers.15 It was an audacious address because the meeting was sponsored by IBM-Germany and was largely made up of computer researchers and experts. Postman could get away with saying nasty things about computers because he was one of the world’s authorities on the impact of runaway information on people’s lives.

Postman conceded that the current deluge of information did not begin with computer technology but with the printing press. Gutenberg could scarcely have imagined what he set in motion. Postman reported that, in 1990 in the United States, there were 260,000 billboards, 11,520 periodicals, 27,000 videotape rental outlets, 362 million TV sets, and over 400 million radios. Each year, there are 40,000 new book titles published in the U.S. and 300,000 published worldwide. Every day, some 41 million photographs are taken. Sixty billion pieces of junk mail arrive in our mailboxes each year. Postman, whose name is an ironic reminder of junk mail and other unwanted information, fears that this din has reached such a level that information no longer has any relation to the solution of problems. “It comes indiscriminately, directed to no one in particular, disconnected from usefulness; we are glutted with information, drowning in information, have no control over it, don’t know what to do with it.”15

Why is this information so useless? There are two reasons, according to Postman. “[W]e no longer have a coherent conception of ourselves, and our universe, and our relation to one another and our world. We no longer know, as the Middle Ages did, where we come from, and where we are going, or why. That is, we don’t know what information is relevant, and what information is irrelevant to our lives. Second, we have directed all our energies and intelligence to inventing machinery that does nothing but increase the supply of information. As a consequence, our defenses against information glut have broken down; our information immune system is inoperable. We don’t know how to filter it out; we don’t know how to reduce it; we don’t know how to use it. We suffer from a kind of cultural AIDS.”15

Lacking a coherent worldview and a comprehensive sense of meaning, we have no stable criteria for judging information. Even when incoming information does resonate with our sense of values, as in those missing kids’ faces on milk cartons and junk mail alerts, the sheer volume of these exposures results in compassion fatigue, and we cease to pay attention to them.

Information does not come with values attached. Medical science can tell us how to lower our cholesterol level, blood pressure, and weight, but it can’t tell us whether it is intrinsically good to do so. Science can tell us how to harvest embryonic stem cells but is mute about whether this should be done. Are nuclear weapons a good idea? Experts can make them, but whether or not they should be deployed is a question that can’t be answered from within science itself. This is because scientific information is one big value-free zone.

The failure of information to help us live better lives is especially acute at the personal level. If you and your spouse are unhappy and your marriage ends in divorce, this won’t happen because of a lack of information, says Postman. “[W]hat ails us,” he says, “what causes us the most misery and pain—at both cultural and personal levels—has nothing to do with the sort of information made accessible by computers. The computer and its information cannot answer any of the fundamental questions we need to address to make our lives more meaningful and humane. It cannot tell us what questions are worth asking.” As Picasso said, “Computers are useless. They can only give you answers.”16

The problem with computers gets worse. They have become a mesmerizing Golden Calf that distracts us from looking for answers in better places, and, in so doing, they compound the spiritual emptiness that already exists. “Does one blame the computer for this?” asks Postman. “Of course not. It is, after all, only a machine. But it is represented to us, with trumpets blaring, … as a technological messiah.”15

If more information were the answer to a happy life, you would expect people in developed nations like ours to be jumping with joy by now. But studies show that the level of happiness in highly developed societies has not greatly changed during the past few decades, although information has exploded.17, 18 It is also widely assumed that access to information leads to economic success and thus to greater happiness, but, even here, the picture is clouded. Thousands of interviews in 64 countries during the 1990s found that, above an annual income of approximately $13,000, additional income does not seem to enhance people’s sense of well-being.19

Perhaps the greatest danger of information is that it gets confused with wisdom. Postman again: “As things stand now, the geniuses of computer technology will give us Star Wars [missile defense], and tell us that is the answer to nuclear war. They will give us artificial intelligence, and tell us that this is the way to self-knowledge. They will give us instantaneous global communication, and tell us this is the way to mutual understanding. They will give us Virtual Reality, and tell us this is the answer to spiritual poverty. But that is only the way of the technician, the fact-mongerer, the information junkie, and the technological idiot.”15

You can’t not believe everything you read 

Why do we believe so much of the bogus information dished up from Wall Street, politicians, and the 24/7 news channels? Why aren’t we more discerning?

In recent years, psychologists have investigated how we comprehend incoming information. Experiments show that the first step is to believe the data one confronts. This step bypasses reasoning and is so automatic that it is practically unavoidable. Doubting something so strongly that we reject it on first hearing is unusual. Doubt usually doesn’t happen immediately; it kicks in later. That’s why doubt is said to be retroactive; it is applied after the initial belief is already in place.

Emotional stress makes us even more likely to accept things uncritically. If we are under time pressure, interrupted, or under cognitive load, we believe false information more readily and use it in making subsequent decisions.

Now, we can see how our immune system against information glut breaks down. Humans are wired for gullibility; we want to believe what we see and hear. As a result, “I saw it on TV” or “I read it in the newspaper” is as sophisticated as we often get in sorting through information.

How can we escape the belief trap? Psychologist Daniel T. Gilbert, of Harvard University, and his colleagues, whose research underlies the dynamics of belief, have found that in order to correct false information people need at least three assets: (1) a set of rules for logical analysis, (2) a set of true beliefs to serve as standards, and (3) the ability and motivation to perform such analysis and revision.20, 21

But where are these “true beliefs” to come from? In our cynical, materialistic age, many people have lost the meanings, values, and beliefs that anchored past generations. Desperate for something to believe in, people all over the world, including our country, are turning to fundamentalisms of various sorts, which offer certainty on demand. Often, “true beliefs” are gleaned from the worthless information that valid beliefs should protect against.

The desire to believe in something, anything, is so strong that people’s false certainties often cannot be corrected, even by truth. Gilbert’s experiments reveal that, even when people are warned in advance that the information they are to be presented will be false, they nonetheless consider it true.22 Research in the placebo response affirms this. Even when people are told they will be given a placebo, it often works anyway.23

Our tendency to believe the first news we hear creates challenges for healthcare professionals. As an internist, I recall the early popularity of the benzodiazepine class of drugs that included Valium (Roche, Nutley, NJ), Xanax (Pfizer, New York, NY), and a host of others. When Valium was released in 1963, it was heralded as a miracle drug that was the answer to a great range of psychological problems. During the 1970s, the use of these medications soared.24, 25 Were they safe? During my medical training, I recall being reassured by professors that benzodiazepines were completely harmless. One of them said, “The only way Valium can harm you is if you lie down on the floor, cover your head with a mound of tablets, and suffocate.”

Like most physicians of that decade, I believed the safety reports about these medications and prescribed them confidently, certain that my decisions were based in good clinical science. When reports of adverse effects—habituation, addiction, withdrawal syndromes—began to surface in professional journals, I did not know what to make of them. I found myself in the cycle Gilbert describes—initial acceptance, followed by great difficulty turning my beliefs around. The cognitive dissonance I experienced was profound. Acknowledging the troublesome reports meant that I had to question the wisdom of my old professors, admit that I had been gullible, and consider that I may have harmed some of my patients. I made the switch in thinking, but it was not easy.

Much of medicine is like this. Physicians become comfortable with a particular way of doing things, and we change our views only with reluctance. We are like a giant ocean liner that cannot stop quickly or turn on a dime. Our momentum carries us forward, even when compelling reasons to change course are staring us in the face.

Information, fear, and government 

Psychological stress, the above research shows, causes us to accept false ideas uncritically and hold on to them, even though they may be irrational. Governments discovered this long before psychologists did. As every bureaucrat since Machiavelli has known, fear is a politician’s best friend.

Since September 11, 2001, fear has been epidemic in America, exacerbated by periodic orange alerts declared by the Department of Homeland Security, and by terrorist events in other countries. Government officials invariably capitalize on these happenings, because they realize that these fear-laced occasions are ripe opportunities to instill certain beliefs in citizens. For example, following the London terrorist bombings of July 7, 2005, there were nonstop warnings by government leaders that the same thing, or worse, might happen in the United States if we do not “stay the course” in the war in Iraq. These statements were made in order to etch in the public mind a connection between the events of September 11 and the Iraq war, and therefore to generate support for it, even though the bipartisan 9/11 Commission had reported in 2004, “But to date we have seen no evidence that these or the earlier contacts [between al Qaeda and Iraq] ever developed into a collaborative operational relationship. Nor have we seen evidence indicating that Iraq cooperated with al Qaeda in developing or carrying out any attacks against the United States.”26 Neither has any compelling evidence been found that Iraq possessed weapons of mass destruction, as originally claimed. Our government relentlessly used both of these “facts”—a fanciful Iraqi-al Qaeda connection and imagined Iraqi WMDs—as the official reasons for invading Iraq; “spreading democracy” came later, after the original reasons were discredited. And when any of these contentions were criticized, the patriotism of the critic was publicly questioned, often savagely. This sort of information management worked splendidly; the spurious claims were widely believed. Surveys show that a large number of Americans remain convinced that the September 11 terrorists were Iraqis, although none were, and that Iraq was poised to unleash a mushroom cloud over the United States, although it did not possess such a nuclear device.

Gilbert’s above findings about gullibility are relevant in sorting out this situation. They shed light on why we are willing to accept false justifications by our government, why the architects of the war in Iraq like to keep us scared witless, and why beliefs persist long after they have been disproved.

I am not suggesting that the current administration is unique in distorting information; all governments are willing to lie from time to time in order to generate the fear that will insure false beliefs. And, because the role of a health journal is not political persuasion, I am not trying to convert readers who support our government’s current policies in the Middle East. I am suggesting, however, that these matters are not “just politics.” They should not be ignored by anyone concerned with health, because of the dreadful consequences of fear, belief, and violence.27

War and politics are health issues because politicians make war and war kills people. As Zbigniew Brzezinski, former director of the National Security Council under President Carter, points out in his book Out of Control: Global Turmoil on the Eve of the Twenty-first Century, politically motivated savagery was one of the world’s biggest killers during the twentieth century.28 The extent of the slaughter is mind-boggling—an estimated 170 million people killed, mostly civilians. In comparison, the great influenza epidemic of 1918-19 killed an estimated 25 million individuals, and AIDS had killed approximately 12 million through 1998.29

The toll continues. As of this writing, 2,129 American soldiers have been killed in Iraq.30 In addition, according to a 2004 Lancet study, 100,000 Iraqi civilians may have been killed subsequent to our invasion of that country, although no one knows for certain.31, 32

Atrocitologists—those who study atrocities—estimate that one out of every 22 human deaths in the twentieth century was caused by fellow humans.29 We are appallingly mean to one another, and our meanness results largely from how we process information about “the other.” If we permit our information defense system to be degraded by anxiety and fear, the costs can be lethal.

No one was better than the Nazis in manipulating information and penetrating people’s belief systems, a talent they used to construct one of the most efficient killing machines in history. They compromised the information immune system of an entire nation, as described by Hermann Goering, commander of Hitler’s Luftwaffe during World War II, during his Nuremberg trial in 1946 prior to his death sentence. Goering said, “Why of course the people don’t want war. Why should some poor slob on a farm want to risk his life in a war when the best he can get out of it is to come back to his farm in one piece? Naturally the common people don’t want war: neither in Russia, nor in England, nor for that matter in Germany. That is understood. But, after all, it is the leaders of the country who determine the policy and it is always a simple matter to drag the people along, whether it is a democracy, or a fascist dictatorship, or a parliament, or a communist dictatorship. Voice or no voice, the people can always be brought to the bidding of the leaders. That is easy. All you have to do is tell them they are being attacked, and denounce the peacemakers for lack of patriotism and exposing the country to danger. It works the same in any country.”33

Our mission 

Without a sense of meaning, values, and how we fit into the world, we will be poorly equipped to cope with the information tsunami surging over us, whether that information involves medical testing, therapies, or any other area of life. That is why at EXPLORE we choose to go beyond the customary practice of publishing only health information, but also information about eco-environmentalism, spirituality, and consciousness. By addressing what, why, and how we believe, and the meanings and values that sustain us, we hope you will experience a boost to your information immune system. If we are successful, you will be able not only to believe, but also to disbelieve, anything on first hearing. That goes for disbelieving anything you read in this journal—including, yes, this essay.