The Cyber Effect (35 page)

The son was suspicious about all those drugs—and wondered if his father's pain could be a side effect of one of his many prescriptions. Sure enough,
he found exactly what he was looking for online. His father's symptoms were listed as possible side effects of Lipitor, the popular cholesterol-lowering medication that his doctor had prescribed. Well, that was easy. All his father had to do was stop taking it for a while and they'd see if his pain went away.

But when the man's father went off Lipitor, instead of getting better, his condition deteriorated rapidly. The pain grew more intense, and he was rushed to the hospital. After an examination by his physician, the man's temporal arteritis was found to have gotten much worse. If untreated, he would lose his sight. The reason he'd gotten worse? The Lipitor wasn't hurting him, as the online information seemed to suggest—it was keeping him alive.

In the newspaper account, the man's physician, Dr. Brian Morton, former president of the Australian Medical Association in New South Wales, spelled out the problem: “There is potential for Dr. Google and well-meaning family members,” he said, “to cause catastrophe.”

When reading the initial study of cyberchondria done by White and Horvitz, I was impressed with the attention to detail, the volumes of data, and the meticulous way that the two scientists had compiled their findings and supported the construct of the condition. But something else drew my attention: While the results showed that 58 percent of individuals who did a medical search online were searching for themselves, the figure that jumped out at me was the staggering number of
slightly more than 40 percent who searched for relatives, friends, work colleagues, and practically anybody else.

Academics call this a “gap in the literature.” I saw it as an opportunity to identify a new cyberchondria-type phenomenon, describing those who habitually and compulsively search for others. I used Munchausen and Munchausen by proxy as models, and after the exciting results came in and my findings were written up, the term
cyberchondria by proxy
was introduced.

Nobody would argue that responsibilities of caring for young children and elderly parents aren't sometimes overwhelming. When a child becomes sick with a high fever—even with the common cold or flu—parents experience an extreme kind of anxiety. According to Laura Criddle, all parents “present somewhere on a continuum of medical neediness.” Many normal parents worry—even becoming hypervigilant or misinterpreting and exaggerating their own children's behaviors and symptoms. If by some chance you happen to experience a “near miss”—when a doctor or medical expert misdiagnosed your child's illness—this can also result in a growing mistrust of members of the medical profession. This kind of trauma can cause an individual to become
more dependent on online searches, and one of the most unfortunate outcomes of cyberchondria by proxy is the amateur prescribing of cures and medicines, the dispensing of prescription medications to unsuspecting friends and family. Don't share your pharmaceuticals with loved ones! And don't send anyone to a so-called Canadian pharmacy to buy cheaper drugs.
In 2013, more than 1,600 of these Internet pharmacies (none of which was actually in Canada) were shut down. In many instances these drugs, when purchased by undercover agents and tested, were found to be not cheaper generic drugs but out-and-out counterfeits.

My own research findings in this area included some cautionary tales. One woman reported an incident in which her partner had been given medication by a relative who had searched online, and the dose provided had been too strong—in fact, it was an overdose. A number of participants described bringing printouts to a doctor's office, referring to a Web search as similar to getting a “second or third opinion,” and noted that the practitioner's attitude toward their self-diagnosis
was “disdainful” or “dismissive” or “irritated.” Participants were supportive of using chat rooms for medical information exchange.

Interestingly, cyberchondria by proxy individuals do exhibit behaviors found in some of the more serious disorders—the challenge to authority, compulsive medical information seeking, escalation, and symptom checking. Connecting these dots was beyond the bounds of my study, but it may be an important component of fully understanding this phenomenon in years to come.

One finding spoke volumes to me: Participants with a medical family background reported resisting the temptation to search.

There is regular search—just plugging in a word, or two words, and getting results that make you anxious. That's where most people start, hoping to satisfy their curiosity about a medical problem.

Next, they might visit a diagnostic website. These sites are designed to lead a worried participant through a set of questions to determine a probable diagnosis.

This is where the power of suggestion becomes a factor. As humans, we can be highly suggestible. Suggestibility describes someone who is “easily influenced by other people's opinions,” or, in this case, the opinion of an algorithm.

How can a normal, healthy person who's experiencing some health anxiety wind up manifesting some actual symptoms?

Let's say you have a pain in your arm that you're worried about. You did a pretty exhausting workout in the gym yesterday, but that fact isn't front and center in your mind. So you find a nice diagnostic website to ease your worries. If you enter the words to describe your main concern, “pain” and “arm,” you will be presented with a nicely laid out graphic with little directional arrows. First you'll be asked if you've experienced pain in your arm. When you answer yes, you'll next be asked if you're experiencing tingling in your fingers.

Here's something to try at home: Hang your arm down by your side, relax, close your eyes, and wait a minute. If you imagine a line going from your tired neck to your stiff shoulder and through your sore tennis
elbow all the way to the tips of your fingers still pulsing from relentless tapping on keyboards eight hours a day…

Do you feel that tingling?

Of course you do.

Now you've graduated to the next question on the diagnostic website: “Is the pain in your arm radiating across your chest?”

Now that you mention it…

You click the box that says “Yes.”

Question #4: “Are you palpitating?” Of course your heart is beating fast—you are having an anxiety attack—but along the way, you have picked up a perfect “cluster of symptoms,” something you've been taught by the website.

A real doctor has been taught to carefully avoid prompting patients with questions like “Is there tightness in your chest?” And medical professionals know that practicing good medicine means not encouraging suggestibility. That's where diagnostic websites fall short. They seem almost designed to spark the imagination. And while they attempt to provide diagnoses, they are actively suggesting, prompting, and even provoking symptoms.

Think about it this way: If you are having a problem with starting your car, the act of searching for an answer online is not going to intrinsically damage your car. But if you are having a problem with your health, the very act of reviewing symptoms may help them to manifest physically or mentally in a technologically amplified
psychosomatic effect
. I have another unofficial term for this,
technosomatic effect
.

So your heart is racing, your chest is tight. With your painful arm, you pick up the phone and call 911. When the EMT arrives, you reel off a perfect cluster of symptoms that have been prompted by the website. You may be the wrong age, have no relevant history, and appear reasonably well. But how can the EMT—or the emergency room doctor—be certain? Your perfect cluster makes it sound like a textbook cardiac event.

A medical professional has no recourse but to run a battery of tests, scans, EKGs, MRIs, and blood panels—or whatever intrusive diagnostic
procedures are called for, given your cluster. If nothing unusual is found, often another round of tests will be ordered, and panels, scans, and follow-ups.

The irony of this sequence is that many of the diagnostic procedures carry an inherent risk. As anyone who has been brought back for a second ultrasound or a more comprehensive mammogram knows, one of those risks is the heightened stress and anxiety from the medical testing alone. Empirical evidence supports this. One of the highest anxiety-inducing events in life is awaiting the results of medical tests and diagnoses.

But something much worse can happen: A medical problem of
some
kind will be found. Why is that a problem?

Knowledge, as you'll see below, is not always a good thing.

I remember when, in the early 2000s, my friends abandoned the purchase of the latest fashion accessory or beauty treatment in favor of the ultimate makeover: the deluxe “full-body scan.” This was the start of a new wave of medical technology that allowed further exploration of the previously unknown. We were suddenly able to see—in great detail—what lies within us. And even better, we could be watching. Live.

From my perspective, many a good dinner conversation has been ruined by an enthusiastic blow-by-blow, or polyp-by-polyp, description by someone on the receiving end (literally) of a live stream colonoscopy. Never before have we been able to see inside ourselves so clearly! The procedure itself is all well and good—and has surely saved thousands of lives. But professional associations have warned that the scans lead to rounds of tests of innocuous lumps while
missing common cancers.

Dr. Harvey Eisenberg was a cardiovascular radiologist who took an aggressive approach to wellness by performing comprehensive full-body scans on the “worried well” at his Health View Center for Preventive Medicine in Newport Beach, California. His motto was “
You don't know what's inside until you look,” and his “preventive” scans
created quite a media sensation. Forget the colon; Dr. Eisenberg wanted a look at every organ, every bone, and all tissue. His approach struck many as cutting-edge medicine.
He was celebrated on
The Oprah Winfrey Show
, and consulted, and endorsed by the likes of William Shatner and Whoopi Goldberg. Between 1997 and 2000, more than fifteen thousand individuals were scanned from neck to pelvis at the Health View Center in hopes of discovering and preventing any nascent illness. Studying the results, radiologists looked for early signs of heart disease, cancer, arterial plaque, lung nodules, inflamed prostate, and spinal vertebrae degeneration.

Guess what happened?

An
evolving pathology was found in
every case
.

Every single one.

Think about that.

Dr. Eisenberg claimed that he'd never seen a normal scan. “
It's a daily event for us to uncover unsuspected life threatening disease,” he said, “that is either stoppable, curable, or reversible.”

The radiation exposure during whole-body CT scanning is low, but still a concern. When asked about this, Dr. Eisenberg said, “
Yes, there's an increased risk, but you don't get something for nothing.”

A potentially bigger problem than radiation awaited the patients of Dr. Eisenberg. The bottom line: If every physical problem or evolving pathology inside our bodies were discovered and treated, would it save more people than it killed?

Iatrogenesis
is a Greek term derived from
iatro
, or “healer,” and
genesis
, meaning “brought forth,” which refers to an illness “brought forth by the healer.” It can take many forms: an unfortunate drug side effect or interaction, a surgical instrument malfunction, physician negligence, medical error, pathogens in the treatment room, or simply bad luck. An early study in 2000 reported that it was the
third most common cause of death in the United States, after heart disease and cancer.

You heard that right.
The third most common cause of death
. Having an unnecessary surgery or medical treatment of any kind means taking a big gamble with your life. Before long, the U.S. Food and Drug Administration began issuing warnings about the potential risks of the scans, and health insurance providers not only refused to cover them
but advised against them. When last heard of, Dr. Eisenberg and his full-body scanner were operating out of a van in Irvine, California.

Nobody wants to die before his or her time. And it turns out that worrying that you might be dying, and acting on that worry, can become a self-fulfilling prophecy. The full-body-scan boom went bust. And the worried well moved on—mostly online.

We have to thank John James, a toxicologist at NASA who lost his son to what he believes was a careless medical mistake in a Texas hospital in 2002, for shedding light on the growing number of
deaths from the iatrogenic effect. An estimate of between 44,000 and 98,000 deaths annually in the United States as a result of medical error in hospitals was reported in 1999, when the Institute of Medicine issued its now famous report,
To Err Is Human
. A decade later, the Department of Health and Human Services reported that about 15,000 hospitalized Medicare beneficiaries per month experienced an event that contributed to their deaths—that is, failures in hospital care. This results in an estimated
180,000 patient deaths annually. In 2013, with the help of James and the advocacy group he started, Patient Safety America, a
stunning jump in deaths was reported: between 210,000 and 440,000 hospital patients in the United States die each year as a result of a preventable mistake.

By his reports, these deaths increased fourfold between 1999 and 2013. If anything, given the improvements in medical technologies in those fifteen years, the death rate should have decreased. Is patient care getting so much worse? Were the previous studies done poorly?

What is the difference?