DENIAL: IT’S NOT JUST A RIVER IN EGYPT
If your first John Coltrane album was Live in Seattle, chances are it sounded like gobbledygook. Of course, your belief that it is nonsense sits across a deep chasm from aficionados on the other side of the chasm who think it’s genius. From where you stand, you can’t imagine the other point of view. There is no ground between here and there, and it seems like there’s very little hope of ever crossing from one side to the other.
Unfortunately, this same chasm divides a doctor from a patient who believes Big Pharma is hiding a cure for cancer or that a no-sugar diet will cure metastatic disease. And the elephant in the room is that this divide exists now in many places – climate science, vaccines and GMO foods to name only a well-known few.
The thing is, it may be all well and good for that one high school friend of yours to post “evidence” on Facebook that the moon landing was faked, but in the field of cancer science, misunderstanding kills. When a patient chooses to treat aggressive leukemia at a clinic promising a hyperthermic cure – that regulating body heat will fry the disease – that person dies of what could be a treatable condition. When a patient decides to “try other options first” to treat an early-stage cancer, that patient may watch the cancer gain momentum until it outpaces possible treatments.
On the other hand, every person brings unique history, values and goals to cancer care. What right does Western medicine have to insist that an older patient who has fought cancer before must fight it again with surgery, chemotherapy and radiation rather than exploring naturopathy? And what about the patient whose religion includes the belief that receiving another person’s blood would divert the soul to the wrong afterlife? Aren’t we all entitled to our beliefs?
All of a sudden, Western medicine’s “mistaken belief” starts to look more like a “personal truth” and what seemed like two sides of a canyon turns out to be the gradient of a long slope. That said, there are common building blocks to these personal truths, some solid and some a little shaky. Let’s first take a look at these building blocks of adjusted “truth” and then consider what to do with them.
“Back in the 1980s there were a handful of studies showing that autologous bone marrow transplantation might be a useful treatment against breast cancer,” says Karyn Goodman, MD, MS, David and Margaret Turley Grohne Chair in Clinical Cancer Research, Associate Director for Clinical Research at the University of Colorado Cancer Center. “Suddenly everyone wanted to do it, and big reputable places started offering bone marrow transplant for breast cancer.”
When insurance companies refused to cover the proce-dure, the process often ended up in court where some cases were decided in favor of patients who wanted insurance companies to pay for the procedure and some in favor of insurance companies that didn’t want to pay.
“Then ten years into it, they finally published the results of a randomized-control trial showing there was no benefit. In fact, because the procedure was so toxic, it was actually doing harm to patients,” Goodman says.
After nearly 30,000 women received bone marrow transplant for breast cancer, at the 1999 meeting of the American Society for Clinical Oncology, research teams presented six studies examining the results. Five of the six showed no benefit, with treatment-related deaths in 3-15 percent of these cases. But proponents pointed to the sixth study that showed dramatic results.
“People wanted to believe it,” Goodman says. The same way we believe that medicine that tastes horrible must be more powerful than medicine that tastes okay, “people thought that more treatment was better,” Goodman says, and that, “a treatment that was so grueling must be the most aggressive thing you could do to treat cancer.”Unfortunately, the sixth study that showed benefit had been completely fabricated. (You can read all about it in the book False Hope: Bone Marrow Transplantation for Breast Cancer.) In this case, the mistaken belief of both doctors and patients was born of bad science.
This distortion seems like a frustrating anomaly, a cautionary tale of good science gone bad after escaping the laboratory. But it turns out this is the tip of a giant iceberg of scientific misinformation.
Bad science creates specific mistaken beliefs, but it also opens a Pandora’s Box of doubt – if a few studies were faked or botched, then how are we to believe the results of any study? In our Jazz analogy, it’s easy to believe that Coltrane was just making noise when other, less talented musicians of that time period were undoubtedly doing little more than blowing hot air. The existence of real baloney paints everything as baloney, especially when sensationalism is magnified by…
In February 2017, University of Colorado Cancer Center investigator and pediatric oncologist Adam Green, MD, published a study in the Journal of Clinical Oncology with the title “Death within 1 month of diagnosis in childhood cancer: An analysis of risk factors and scope of the problem.” It was a careful and important study, showing among other things that pediatric deaths within one month of diagnosis had been under-reported – much of what we know about pediatric cancer comes from clinical trial data, and some children don’t have time to enroll in clinical trials. The Cancer Center wrote a news release to accompany the study with the title “Early death from childhood cancer up to 4 times more common than previously reported.”
The UK newspaper The Daily Mail used this news release as the basis for their story titled “Spike in children dying from undiagnosed cancer: Thousands are slipping through the net despite huge gains in pediatric care, report warns.”
Somewhere between the study, the university news release and the story in the popular press, the truth had disintegrated. More precisely, it had not disintegrated but had diverged, splitting into two truths. For Adam Green, death within a month of diagnosis happened more often than we thought, and for readers of The Daily Mail, there had been an unreported spike in kids dying of cancer – our children were in danger, news of the crisis had probably been suppressed, and we were basically only a plague of toads short of the apocalypse. And while the Journal of Clinical Oncology has a circulation of about 35,000, reaching primarily doctors and scientists, The Daily Mail is the United Kingdom’s second-best selling daily paper with a readership of about 4 million. If truth is measured by the population that believes, we would do well to watch the weather report for falling amphibians.
This seems like a frustrating anomaly – a cautionary tale of good science gone bad after escaping the laboratory. But it turns out this is the tip of a giant iceberg of scientific misinformation. Sitting here at the junction of research and news, we’ve seen careful studies from the CU Cancer Center misinterpreted to imply that eating bitter melon will cure metastatic pancreas cancer and that your daily multivitamin will kill you. How far is it from these stories to the belief that green coffee extract will melt away belly fat (thank you, Dr. Oz), or for that matter, to the belief that the moon landing was faked?
Now we have an ecosystem equipped to farm doubt. Bad science sows the seeds and sensationalist media heaps on the fertilizer. Now let’s add a patient, intelligent and conscientious but blind with fear and learning the language of cancer for the first time.
Fear and Protection
“I had a patient yell at me yesterday, ‘You’re just part of the standard-medicine way of looking at things!’” says Benjamin Brewer, PhD, director of Clinical Psychology Services for the Blood Cancer and BMT Program at the CU School of Medicine. It’s not uncom-mon and Brewer doesn’t take it personally. He knows that sometimes an important ingredient of disbelief is fear.
“It’s often a defense,” he says, “in some cases patients have trouble confronting the idea that their best chance is to go through this very difficult procedure. It’s understandable because transplants are very hard on people. There’s fear of the pallia-tive pathway and fear of chemotherapy and so the only way out are the non-Western options. Belief in alternative therapies offers a way out of the stress, a very visceral escape when there seem to be no good options.”
This defense leads to what Brewer calls “Googling for beliefs.” Here’s an experiment you can try at home: Go to Google and type in the words “chemotherapy” and “poison.” Recently, the top result was an article titled “The truth about chemotherapy: Toxic poison or cancer cure?” It had been viewed 40,000 times and shared on Facebook 12,000 times. And the takeaway was pretty clear: “The truth is that chemo is toxic, carcinogenic (causes cancer), destroys erythrocytes (red blood cells), devastates the immune system, and destroys vital organs,” the article writes. In fact, of the first ten Google results, only one, from Cancer Research UK, could be seen as even remotely impartial. Other titles included “Chemo is toxic poison. I used natural therapy to beat cancer” and “Chemo kills – the facts about chemotherapy and real cancer cures.”
“When you Google ‘chemotherapy is bad’ you end up on the chemotherapy is bad channel,” Brewer says. There is a grain of truth there – chemotherapy is often medically very difficult. But its downside is only part of the story. The other part, often overlooked by sensationalized articles, is that since the first National Cancer Institute clinical trial in 1955, the field of medical science has shown that chemotherapy is often a patient’s best option.
Really, facts and fictions have always swirled around us competing for our belief. Only, now technology gifts us the ability to thin-slice this collective unconscious, choosing which slivers reach us and which ones do not.
Basically, the Internet allows the truth to turn back in on itself, quarantining opinions like “chemotherapy is bad” from the infection of competing viewpoints. The best way to access any single opinion is through the rabbit hole of a preconceived notion. Psychologists call this confirmation bias: We believe the evidence that supports our belief, and firewall ourselves from evidence – even strong evidence – that contradicts it. Don’t believe it? Try Googling “proof of Bigfoot.”
The result is a verdant, robust mistaken belief. And the question becomes what to do about it.
The obvious antidote to mistaken beliefs is fact. All you have to do is present rational evidence showing that the person you hope to convince is wrong and that you are right.
“And it’s surprising how completely ineffective that is,” Brewer says. Brewer has seen (and other psychologists have shown) that facts are useless against emotionally charged beliefs.
“If you keep pressing from the scientific view, people can shut down and go the other way quickly,” says Brewer. Instead, “Like a Chinese finger trap, you have to kind of go back a little bit to get out of it.”
If a patient or a doctor or a scientist or even a branch of science has built belief on a shaky foundation, it may be worth reevaluating the belief that sits at the pinnacle of this tower.
For Goodman, this “going back” often includes the story of how we came to our beliefs about medicine. “I spend a lot of time talking about the history of how we got where we are,” she says. “I explain that we started with surgery, the idea that you could just take a cancer out. And I admit uncertainty – we wanted to help but weren’t sure what would work and so we started experimenting with things like chemotherapy and radiation. I explain that we had to learn how to study these things, and that we are still studying these things.”
Asking a skeptic to immediately adopt “scientific” beliefs is like asking a Dixieland jazz fan to dig the 10-minute version of “Greensleeves” on Coltrane’s 1961 album Africa Brass. It’s just too much of a leap, too fast, and too far.
Instead, it’s as if Goodman sits with this jazz fan while listening to the evolution of John Coltrane’s music, from bar-stomping blues through straight-ahead solos with the Miles Davis Quintet, through his “sheets of sound” collaborations with Thelonius Monk, and then his own explorations through extreme tonality and then modality and then finally, eventually and organically into the great beyond, past the boundaries of previous music theory.
Brewer describes another approach he sometimes takes, not necessarily trying to shift belief but instead helping patients see how existing beliefs might be compatible with new, challenging ideas. “For example, explaining that a transplant is difficult but also highlighting the idea that it’s really someone else’s immune system and not fright-ening, synthetic chemicals that may provide the long term cure.” This approach is more like pointing out the elements of 50s jazz that are retained in late Coltrane – you can still hear piano, bass, drums and saxophone; you can still understand it as a conversa-tion between musicians; the ensemble and the individual still alternate in importance. “Sometimes where they are is the only place you can be,” Brewer says.
Both Goodman and Brewer can tell you stories of patients who were killed by their beliefs as much as by their cancer. For Brewer, recently, this was a patient who had chosen to treat leukemia with marijuana and “came to us with a fungal infection from his treatment, what was essentially a mushroom sprouting from his tongue.” But both Goodman and Brewer also admit that medicine must exist within the scaffolding of a patient’s beliefs.
“I’m not going to talk you into anything, I’m just going to let you know what we believe is true, and the process by which that truth was determined,” Brewer says.
In other words, Brewer and Goodman advocate examining the building blocks that underlie belief. If a patient or a doctor or a scientist or even a branch of science has built belief on a shaky foundation, it may be worth reevaluating the belief that sits at the pinnacle of this tower. But if upon inspection, beliefs are built on bedrock – per-haps even the bedrock of religion or culture or nontraditional treatment goals – then what seems odd to some may truly be less a mistaken belief and more a personal truth. At the end of the day, Coltrane may still sound like gobbledygook and chemotherapy may still sound like poison. And what matters most may not be what you believe, but how you came to your belief.