by Wayne Jonas
Professor Kaptchuk has done two studies exploring to what extent the effect of treatment depends on collective belief verses individual belief. In one study, all patients with a painful abdominal condition (irritable bowel syndrome, or IBS) were given a fake treatment—sham acupuncture. However, the social ritual was varied between groups to enhance the dose of collective belief. In one group, the practitioner came in and said very little and delivered the treatment. In a second group, the practitioner explained how the treatment works and set the expectation that the treatment will work. In the third group, a prominent physician from a prominent medical school delivered the treatment with a full explanation and a story about the good results others had obtained with the treatment. All the patients held about the same amount of individual belief in acupuncture at the beginning of the study. But the greater the social meaning produced by the ritual, the better the effect. In the third group, the benefit the patients experience is greater than that achieved by the best drugs approved for treatment of IBS.
In a second study by Kaptchuk, patients were actually told ahead of time that the treatment was fake. One group was given placebo pills with this description: “Placebo pills made of an inert substance, like sugar pills, that have been shown in clinical studies to produce significant improvement in IBS symptoms through mind-body, self-healing processes.” This statement created an expectation that even these placebos have an effect. A second group of IBS patients was given no treatment but with the same quality of interaction with providers. The group given the placebo (and who knew it was placebo) had significantly better pain reduction and improved quality of life.
No matter what form the ritual takes, says Kaptchuk, these can have powerful influences on the healing process. “We cannot explain the effects of rituals using placebo treatments simply by belief and expectation,” Kaptchuk explains. “While belief may contribute some to the outcome in these studies, the effects produced by healing rituals are much larger than can be explained by what the patient believes about the treatment. The main reasons these effects occur is still a mystery.” Research suggests that healing rituals are associated with modulations of symptoms through neurobiological mechanisms, just like we see from drugs. They can not only affect pain, but change the immune system, alter organ function, shift brain processing, and even influence specific cell receptors and genes. One study, done by renowned placebo researcher Professor Fabrizio Benedetti of the University of Turin, Italy, demonstrated that if you link a placebo treatment ritual to a painkiller, you can continue to get pain relief with the placebo after withdrawing the painkiller. And even more remarkably, the placebo will work using the same cellular mechanism of the painkiller to which it was linked. The body not only can learn to heal, it can be taught which specific mechanism in the body to use to produce the effect. Placebo effects, writes Kaptchuk, are often described as “non-specific.” He suggests instead that they should be considered—and further researched—as the “specific” effects of healing rituals.
THE 80% EFFECT
The giant is stirring. Sugar pills and fake needles or sham surgeries do not heal. Healing comes from the meaning and context in which these various treatment agents get deployed. Modern medicine uses placebo in research not to optimize healing but to separate the effects of belief and meaning from those of the drug or technique itself. According to current convention in science, it is the drug or technique that is the “real” effect. Yet by turning the microscope around and looking at what causes healing when no real treatment is used, science has begun to uncover the underlying mechanisms of how we heal that span all modalities—ancient and modern, alternative or mainstream. Since that NIH meeting in 1995, research on the placebo response has exploded and is dissecting the underlying processes and magnitude of our capacity to heal. This research is now being collated and accelerated by the Society for Interdisciplinary Placebo Science (SIPS). Started in 2015, SIPS has become a forum for looking at how healing works by investigating the underlying mechanisms of the placebo response.
And that healing capacity is large, providing close to 80% of the effects we see in medicine. Since the 1950s, when Henry Beecher first put forth his idea that placebo heals, major placebo responses have been reported in over forty conditions with more being added each year. And the magnitude of those effects is often 60%, 70%, and even 80% for many common conditions. These effects can be produced by any agent—including needles, pills, radiation, chants and prayers, touch, surgery, and talk—provided those treatments are delivered in a way that fits the patient and their expectations and is done using a ritual their culture finds meaningful. For many of these conditions, the effect of the social ritual and the meaning it creates for a patient produces a larger rate of healing than the treatment itself. In many cases, the color of pills, their shape, and the way they are delivered determines their effectiveness as much as—or more than—the medicine they contain. In fact, if you optimized all the factors that produce healing in the “placebo” group of a study, it is possible to push the improvements patients get up to a level that often dwarfs the benefit from the “real” treatment.
From the perspective of science and good evidence, a proven treatment needs to show that it works better than the placebo arms of a study and—preferably—for the reasons the scientists think it works. This is called the “specific effect” and is what good science gives us. From a patient’s perspective, however, optimized effects are preferred—whether they are called placebo, “non-specific,” or ritual-based. Of course, ideally these treatment rituals are not unsafe, too expensive, or too difficult to do. The effect is like the treatment you see on the right side of the illustration. But when the placebo and ritual effects are enhanced, it becomes very difficult to prove the agent used in these rituals adds much to the effect. So in the context of an optimized treatment, the supposed “real” treatment cannot be proven.
The work of Kaptchuk, Moerman, Benedetti, and others explained why my proven treatments were not working as well as the ones my patients had found. My proven treatments were not optimized or meaningful for them. My evidence-based medicine was coming into conflict with person-centered care.
THE COMMON THREAD
I now began to understand how Norma, Bill, Sergeant Martin, and many other patients I had treated got better, sometimes because of me, often despite me. When Sergeant Martin described the details of his hyperbaric oxygen (HBO) treatment for brain injury, he was describing how, after going against my recommendations, he had entered a ritual that induced underlying mechanisms of healing. How did he do that? First, he expected it to work. It was not just a matter of his own expectation, however; his father, who encouraged and paid for the treatment, was enthusiastic. Second, the nurses, technicians, doctors, and other patients created a milieu that infused that belief with social meaning. The group that underwent treatment each week shared their stories, experiences, and lives, building cultural meaning into the ritual. They became friends and mutual supporters in healing. Finally, the experience of healing—in his case, breathing what he understood to be lifesaving oxygen—was repeated, reinforced, and conditioned in his experience and his physiology. The treatment agent—oxygen—had no therapeutic value in itself for a damaged brain, but it gave him a feeling that something was happening and a sense of well-being, reinforced each week. In the same way pain drugs were “educated” to work in the study by Professor Fabrizio (this page), Sergeant Martin’s brain was taught how to heal each week through social and classical conditioning. Researchers at SIPS have now shown that three main mechanisms—belief and expectation, meaningful social learning, and reinforcement or conditioning—are the underlying mechanisms of the placebo response, and the likely explanation for the majority of human healing in any system or from any treatment.
MAKING MEANING
In an article that Professor Moerman and I wrote several years ago, we suggested that the so-called placebo response can occur and result in healing, whether a proven or unpro
ven substance is used. Every physician and every medical practitioner wants to try to enhance the therapeutic effects of their treatments. I certainly wanted to. I had been sobered by the death of Charley. And I was sobered further when I saw patients get better, often despite my recommendations. However, my greatest worry was whether the approach to science I was using prevented me from optimizing healing. Whether a treatment is labeled as placebo or not is more of an academic and economic question than the primary concern of the clinician and patient. The question for a patient was not whether a treatment was better than placebo, but the likelihood that a patient would get better after the treatment. I realized that in order to maximize the effect of any treatment I offered, I needed to maximize the response from the context and meaning of the treatment for the patient and culture. Research on placebo was making that process visible in a way I had never seen before. Moerman and I suggested that physicians replace the term “placebo effect” with the words “meaning, context, and learning response” or simply the “meaning response.” We redefined placebo effect as the physiological, psychological, and clinical effects of meaning when a placebo (or inert treatment) is used. That response is really about healing, and the use of placebos or inert substances in research were of value only to help us understand how to heal, not what to heal with. I was beginning to suspect that what health care was mostly about was learning how to heal through meaning. Could it be that many of the thousands of treatments being pushed by practitioners all over the world were just the tools to induce healing by manipulating belief, social meaning, and conditioning through ritual? Was the process of healing being obscured by our constant search for “good evidence” in medicine in which the only “real” treatments are those that can be separated from meaning and context? Was the majority of healing due to the agency of the patient rather that the agent used? The giant was stirring.
BILL FINDS HIS WAY
About eleven months after his surgery, Bill came lumbering back into my office again. He was limping, favoring the right, as before. His wife was not with him this time, but the look of “I have done this before” was. He sat down carefully; I could tell he was in pain. He told me what had happened. After the surgery, he’d felt great. Within three weeks, he had the least amount of pain he’d had in over a decade. So naturally, he became more active, which, he said, “was the whole point.” He and his wife drove several times to see the grandchildren. He could play with them, even sitting on the floor for short periods, something he could not do before. About six months after the surgery, he noticed a slight twinge in his back while he was mowing the lawn. At first it seemed minor. Still, he rested for a bit and did some of the physical therapy stretches he knew. Then, at nine months to the day after his surgery, he was reaching over to pick up a toy from the ground and felt a “pop” in the right side of his back. He couldn’t stand up straight. The pain was excruciating. He went back to the surgeon. X-rays and CT scans showed “nothing different,” and the surgeon did not recommend another surgery. “Give it some time,” he was told. But the pain was back, and continued to worsen. Now it was just as bad as before the surgery. He was back on medications and doing physical therapy—and not driving to see the grandchildren anymore. It had been two more months since he felt his back “pop.”
“So why have you come back to see me?” I asked. Bill paused and took a deep breath sort of like he was letting go of something he had held on to for a long time. He leaned forward and put his hands on his knees. “When I was in here last time, asking about acupuncture and asking you did you think it would help my pain, you asked me some questions that I thought were strange. Questions like, did I have any stress and how did I manage it, how did I sleep, and what my diet was like, and did I have any friends. Things like that.”
“Yes,” I said, “I recall.”
Bill took another breath. “Why did you ask those questions? What did that have to do with my pain?”
“Well,” I said, “I have learned that a path toward healing often involves things not related to the main conditions people come in to see me for—the pain, for example. I was trying to see how open you were to exploring other aspects of your life that might help you feel well, or if you were just seeking another treatment for your back pain. At the time, it seemed you were just seeking another treatment.”
Bill leaned back again but did not cross his arms this time. “I was,” he said. “My wife wanted me to try acupuncture, and I came to see if there was any science behind it. You said there was a little bit, so we tried it.”
“Yes,” I replied. “We tried it, and it didn’t work, so we went on to see the surgeon, and it helped.” I was not sure where he was going with the discussion, but then he came out with it.
“Dr. Jonas,” he said, leaning forward again, “how much science is there to support surgery?”
Now I was a bit worried. Was he angry? Was he looking for ammunition against the surgeon? Or me?
“Well,” I said, “about 75% of people get better after surgery and, as it turns out, so do many of those who get fake surgery. So it seems that the ritual of going through surgery has a lot to do with people getting better. They seem to do other things—like being more mentally positive and physically active. That is likely a large part of the healing.”
Bill took this in. “Just like acupuncture?” he asked.
I thought for a moment. “Yes,” I said, “just like with acupuncture.”
After Bill’s pain had returned, he had begun to look back at all the treatments he had done, almost a dozen of them. He had noticed that most of them helped for a while but then the pain would return. Some, like surgery, were dramatic but not long lasting; others, like acupuncture were gradual or did not work at all. What Bill wanted to know was if his continued search for “cures” for this pain was the right approach. He had been thinking about the questions I had asked—about stress, sleep, diet, friends, and life balance—and the role it might play in his healing. “The most important thing in life for me is to be available to my kids and grandkids, to be active with them, and to be able to do things with my wife—like traveling once in a while. But I spend so much time dealing with the back pain or going to get treatments for it, I have not been able to do that. When you asked those questions about my life, it started me thinking that I needed to focus more on those rather than all the pain treatments. I want you to help me do that.”
Remarkably, Bill, the “fix me” guy, was starting to realize from his personal experience what I was also coming to from my professional and research experience. That healing and curing, though connected, were not the same. Curing involved what he had been going through—getting a diagnosis and trying out various treatments based on the scientific evidence. That evidence was gathered from research and reviews of research comparing one treatment to another treatment, or to no treatment or to a placebo or sham treatment, to see if it was “real.” These studies examined whether the collective response of a group to a treatment was better than the collective response in another group that was given placebo, no treatment, or another treatment. If the treatment group had acceptable side effects and costs, the treatment was said to have “worked” and was recommended to patients. These studies averaged out the effects in groups. But no individual is average.
Healing, on the other hand, was a more subtle and individual process. It involved finding out what gave a person a sense of well-being. Doing what was most meaningful to them. It involved more than seeking a treatment for a specific symptom or condition; it involved finding and engaging in activities that brought joy and satisfaction. It had more to do with caring for one’s deeper self than with getting health care for the body. It involved paying attention to the “meaning and context” of a behavior—the very factors that the research of professors Moerman, Kaptchuk, and Benedetti, and I had found produced the placebo response. It was this meaning and context that my questions to Bill where meant to get at.
“I would be happy to help you do t
hat, Bill,” I replied, “if you will help me understand what processes are most helpful for you in getting well. Can we make it a partnership of learning together—finding out how healing happens in your case?”
Bill agreed. So we started to build a healing ritual unique to him.
THE HEALING JOURNEY
Bill became one of the first of many patients to work with me to traverse a healing rather than a cure-focused journey and to learn a process that would help others unlock their inherent healing capacity: the capacity that placebo research indicated contributed up to 80% of the benefit from many treatments and in many conditions. We started by looking at the scientific evidence for the treatments Bill had done over the past fifteen years and for any treatment or self-care method he might be interested in using. We were especially interested in these questions:
• What was the overall improvement from doing the ritual of the treatment, as measured in the placebo group of a study?
