“He’s dying and we don’t know why.” Huddled outside a closed door in University Hospital, our voices float in whispers. The Chief Resident motions us together in a tight circle, his shoulders hunched over an open hospital chart. “He’s 26 years old, every lab test and xray are normal, yet he’s dying before our very eyes.” His fingers flip through the chart pages, searching for something he knows he won’t find. It’s August 1975, Charleston, South Carolina. I’m a brand new Intern, and definitely a Yankee in this land of the Old South. “He had the Root put on him,” the Chief says. “I’ve seen it before.”
My eyes widen, “The Root?”
“It’s a curse–from a witch doctor somewhere out on the islands. He believes it and it’s probably going to kill him.”
And it did. Three days later, despite all the wonders of modern University Medicine, the young man died. His heart simply stopped beating.
We’ve all heard rumors of such events, but I witnessed this one. All my scientific medical training was no help in any way. It couldn’t save the young man’s life. It couldn’t soothe my troubled soul with rational explanation. There was simply a very large gap between the reality I had just witnessed and the reality of my entire professional education.
Fast forward four decades and we now know about something called the nocebo effect. It was defined shortly after the mechanisms of the placebo effect were discovered by neuroscientists in the 1990s. The placebo effect–accurately described as the power of positive belief–happens when the brain releases pain-relieving, pleasure-inducing endorphins if a person believes that a given treatment will help. Contrary to what I was taught in medical school, the placebo effect is a real measurable neurophysiologic phenomenon. It has long confounded studies designed to evaluate specific forms of medical treatment–be they drugs or other treatment modalities. If I believe a treatment will help me, then it will. The nocebo effect is the placebo effect’s opposite: If I believe something will harm me, then it can. For example: In double blinded studies to test new pharmaceuticals, it is necessary to offer informed consent to people enrolled as study subjects. Subjects are divided into groups: one receiving the actual drug and one receiving a pill with no active ingredient. Because no one knows whether they’ve been given the real drug or the sugar pill, all subjects are informed of possible adverse effects from the experimental drug. In one study, as many as 24% of subjects in the sugar-pill group developed symptoms of adverse side effects. They believed they were taking the real drug and developed the expected side effects. This obviously adds a layer of confusion to interpreting whether a new drug will be of actual benefit. Though much of the nocebo research has focused on pharmaceutical testing–it has also been shown to be the cause of cases of mass psychogenic illness (word-of-mouth transmission of symptoms that have no external cause). There is also some evidence that some cases of allergy and asthma symptoms are nocebo-induced. It needs to be emphasized, the symptoms are real and biologically based. MRI scans that measure our pain response and hormonal tests that measure our brain’s neurotransmitter activity both show that negative belief causes measurable changes in MRIs and neurotransmitter activity. I believe this tells us lots about the power of belief to affect our health. Witness the young man in Charleston all those years ago.
Talk to any physician who’s worked intimately with patients over a professional lifetime and you’ll find that we’ve always intuitively known the power a person’s beliefs have on illness outcomes. The nocebo research suggests that if we doubt that we will benefit from a given treatment, we either won’t benefit, or the benefit will be blunted. Take this hypothesis one step further: If a bad outcome is forecast for our future, and we believe that forecast, will our bodies deny us recovery? Or, even if the illness is one from which recovery isn’t possible (like metastatic cancer), will our quantity and quality of life be foreshortened by our negative belief? As a physician, I’ve long believed that we have to be careful about creating self-fulfilling prophesies
In Medicine today, “scripting” is often applied to people with chronic medical conditions. By “scripting” I mean a person with a given medical diagnosis is assigned a role (“script”) to be lived out. This role is based upon Medicine’s expectations and predictions about how the disease behaves and what will ultimately happen to the person suffering from it. The “script” is outlined at the time of diagnosis–framed in the guise of patient education: “what to expect” as you live with your diabetes, heart failure, cancer, rheumatoid arthritis–or whatever disorder you wish to name. It is often assigned with heartfelt good intentions, as ostensible helpful advice and life suggestions. Case in point: When I was 30 years old I made an appointment with my internist to discuss my plans to become pregnant. Because I’d had diabetes for over 20 years, I knew my pregnancy would require extra monitoring and care. I believed my doctor and I would create a care plan. The only thing I took away from our visit that day was fear and anger. He told me that yes, I would need a care plan, but more importantly, I needed to find someone who would be willing to raise my baby in my absence, since I would most assuredly die of diabetes before my child was grown. Had I not been so headstrong–and a physician myself, I may have believed him. I may have given up both on having a child and given up on having a long and productive life. And my doctor wasn’t a “Root doctor”, he was a diplomate of the American Board of Internal Medicine. How many others do believe such misguided prophesies and live lives of illness rather than wellness?
This isn’t to mean that we should shield people from risks or hard realities. We shouldn’t. Everyone deserves to make their own life decisions with as many facts available to them as possible. Yet this can be done without the scripting that creates self-fulfilling prophesies. Sadly, scripting is modern Medicine’s version of hexing.
So how do we, as physicians, advise without scripting? It is a slippery slope, to be sure. I believe we must work very hard to “see” every person for who they are: their beliefs, their life situations, their desires, and most importantly what it is that gives meaning to their lives. This takes time and mindful attention. It means asking the right questions and listening to the answers. It means gathering all possible medical indicators, but not stopping when the xrays, CT scans and lab tests have been amassed. Most importantly, it means relaying all the medical facts without judgment and with an open sense of Hope. This Hope is not necessarily a quest for a cure, but the Hope for ongoing engagement with life. As David-Steindl Rast so aptly says, “Hope is openness for Surprise.”
Our hearts must remain open to whatever those surprises may be. Only with the openness of Hope can we become our healthiest selves.