by Wayne Jonas
• Was the treatment better than no treatment at all?
• Was it better than other treatments for the same condition?
• What were the side effects and harms?
• How complicated was it and what did it cost?
We placed all this information in a chart. What immediately emerged is that very few treatments—conventional or alternative—had good evidence that they worked in the long run. Most had never been compared to a placebo ritual, and when they had been, almost all of them added only a small amount to the overall outcome—often less than 20%. Some worked slightly better than others, but most treatments had not been compared to each other directly, so it was rare that we could determine whether one treatment was better than another. Almost all of them were better than doing nothing. It appeared that you needed to do something to get the most benefit out of the healing ritual, but the specifics of that something was less important than we thought.
While the overall response rate between treatments varied little, the adverse side effects, on the other hand, varied considerably. Major interventions, such as surgery and medication, produced unwanted side effects in more patients than benefited from them. Often 50% to 60% of patients would experience a side effect. Gentler treatments, such as yoga or music, had fewer and less severe side effects—but they were not without problems. Often the research did not even bother to measure side effects, which created a gap in information about them.
When we stepped back and looked at our handiwork, we both immediately saw a pattern emerge. Most treatments did not work better than the ritual and so were not thought to be “real” and were not offered or encouraged by doctors, including me. But looked at another way, almost all the treatment rituals actually helped people get better—often producing improvements in 60%, 70%, or even 80% of patients in the group—just as seen in the placebo literature. Bill commented, “So instead of not having any treatments that work, it looks like I have a wealth of options. I just need to decide which ones I like, can do, and [can] afford.” His insight was profound. Bill had gone from a cycle of “Fix me or let me try another treatment I don’t like” to a smorgasbord of options. He now had to decide only which ones were the most meaningful to him—that is, the ones he could and wanted to do to achieve his goal of playing with the grandkids. Freed from a mind-set that was looking to the next magic cure for his pain, he could go about building a pathway to well-being based on what was meaningful for him.
To help find and select the most meaningful treatments, Bill started by keeping a journal in which he wrote down observations about what made him feel well and what did not. The “strange” questions I had asked him on his first visit to me became the basis for these observations. They did not have to be linked to his pain. It could be anything he observed that helped him feel better about himself—helped him feel happy and well. After two months of keeping this journal, Bill came back with several insights.
First, his back felt the worst when he did not get enough sleep. He was in a habit of overeating into the evening, usually accompanied by several drinks and reading the stock market on his cell phone before going to bed. He snored a lot and woke up frequently. His doctor had put him on a night breathing treatment called CPAP but he did not like the apparatus. He never took naps. His doctor had also told him he was overweight and needed to lose fifty pounds or he would become diabetic like his father had been. He was already prediabetic. The dietitian he went to gave him a calorie-restricted diet and told him to stop drinking.
Second, he found that he was constantly on the go all day. About what, he wasn’t sure, but things just seemed to always be required of him—mostly by his wife, who wanted him to help keep the house repaired and to run errands. While he and his wife had always had a good relationship, after the journaling, he realized that he really didn’t talk with her—or anyone else for that matter—about his experiences or worries. For example, when his father had died a few years before, he had done all that was needed for the funeral and burial. His father was an alcoholic, and they had not had been close. He had not engaged much with Bill and his brother, except to yell at them and occasionally hit them. Bill never talked about his relationship with his father with anyone, including his wife, and did not discuss his feelings about his father’s death with anyone.
OPENING UP
As we continued to explore questions on healing and Bill continued his journaling, he noted that he did a number of things that made him feel better. A hot shower followed by putting pressure on his back lessened the pain. Stretching had always helped, but he found it difficult to make himself do it because it was painful. Before the pain, he had enjoyed hunting and spending long hours in the woods. Being outdoors in his backyard, watching the birds, now soothed him. In one journal entry Bill wrote the following: “Good night’s sleep last night, woke up rested and serene. Katie [his four-year-old grandchild, who was visiting] came in to play; sat for an hour on the floor with a tea set and dolls. No pain. She is such a joy.” This triggered a memory for Bill from his childhood. He was about five years old and came running home from school excited about a clay ashtray he had made for this father. His father had come home early with a headache and had been drinking for several hours. On reaching the house, Bill burst into the living room and ran up to his father to show him the ashtray. Startled from his stupor, his father grabbed the ashtray and hurled it across the room, smashing it against the wall. Bill ran to his room and shut the door. He remembers crying for hours. From that day forward, he would tiptoe around his father, uncertain as to how he would react to any situation. He never cried again.
“I don’t know why I remembered that episode,” Bill said, “There were many others. Maybe being with Katie reminded me of my childhood. I made sure I was not that way with my kids, but I never recall him just sitting on the ground playing tea.” He took a deep breath. “I don’t know why I told you that story. I have never told anyone that story.”
Little did Bill know that opening up to difficult traumas and telling them to someone or writing them down is one of the most effective self-healing behaviors. Extensive research has shown that as little as a single episode of deep self-engagement, usually around a trauma or hurt, can have prolonged healing effects. Research by social psychologist Professor James Pennebaker and others has documented psychological, physiological, and immunological changes from such episodes in well-conducted randomized controlled trials—the gold standard of science. Others have shown that these meaningful engagements can improve pain relief in arthritis, lung function in asthmatics, and immune function in the elderly. They also reduce the need for medical care and lower costs. By giving himself space to observe and map his own healing path, Bill had discovered this for himself.
BILL’S BODY STARTS TO RESPOND
Bill’s healing had begun, not from psychotherapy (he would never submit to that) but by observing what he valued most in life, what made things worse, and what made things better. By finding meaning and linking it to the behavior and treatments he wanted, he was building his own self-care rituals. We mapped out a plan. He decided to tackle sleep first. When rested, he felt better all around. He agreed to limit his drinks to two a night; before bed, he would take a hot shower and listen to an audio recording of nature sounds to help him relax. He stopped all electronic reading from bed and darkened his room with blackout curtains, covering up any electronic clocks. We put him on a small amount of the herb valerian (proven in randomized placebo-controlled studies to help people go to sleep) and low-dose, slow-release melatonin (not yet proven in randomized controlled studies), just for a month to assist in conditioning a deep relaxation and help him get into that habit at night. He also took his pain medications as needed. For one month, we did nothing specifically for Bill’s pain or back. For the first time in years, it was not the focus of his visits to my clinic or of his daily routine. Yet he reported feeling better. He still had pain, but it did not bother him as much. He was moving more. He was ta
king less medication.
We then began to work on Bill’s body. Pressure helped, so he thought he would like a selective use of massage. It just so happens my group had done a good meta-analysis of massage that showed effectiveness for chronic musculoskeletal pain like Bill’s—especially compared to doing nothing, but even a little bit better when compared to sham massage, which involved very light touch. He also found stretching useful but had tried physical therapy and did not want that again. Also, he said he didn’t want to keep coming into the hospital or clinic to receive treatment “with all those sick people.” Bill was starting to no longer identify as a patient. We chose yoga instead.
There happens to be good research evidence that yoga is effective for easing back pain. The year before, my organization had conducted a comprehensive systematic review of nondrug approaches to pain. Yoga had emerged as one of the best. Recently, the American College of Physicians, the top group of internal medicine doctors in the United States, added yoga and massage to their guidelines for managing back pain. But someone like Bill, with long-term chronic pain, needs to do yoga carefully. Bill could easily set off spasms and fall into a downward spiral if his stretching was not done right. He had injured himself with stretching before. We decided to combine a periodic massage with gentle restorative yoga done slowly and under professional guidance. Soon, he learned how to control the stretches himself and was doing them three times a week—twice a week at home. After about four weeks, he found that when he did the massage/yoga combination, he didn’t need his nighttime pain medication, and the yoga alone allowed him to cut his daily medication in half.
Eventually, Bill began to ask about the role of food for his weight and prediabetes. He wanted to explore how he could connect better with this wife and friends. By the time he was ready to explore those issues, however, his back pain was 80% better. Perhaps more important, he knew how to take charge of his own healing. He now knew how to use various agents to enhance his own healing agency.
THE PAIN POINT
Worldwide, chronic pain affects over one in five adults. Primary care settings in Asia, Africa, Europe, and the Americas report persistent pain in 10% to 25% of adults. Worldwide costs from all this pain total in the hundreds of billions per year. But the true costs of pain cannot be measured in money. Chronic pain, like most chronic illnesses, is a multifactorial, multidimensional condition that affects not just the body, but also the mind, the spirit, and the social environment.
Sometimes, a specific cause can be found and fixed. For acute disease, trauma, most infections, and an a few chronic diseases, a specific cure is possible. But for chronic pain and many chronic illnesses, there are no single cures. Bill spent fifteen years looking for a pain cure. What he needed was healing. He needed to become aware of those factors in this life that helped him feel better in general and get well. And he needed assistance in incorporating those into his life. He needed someone to help coach him in the process of self-care.
Most treatment approaches for chronic pain cannot be proven using the gold standard of research—the double-blind, randomized, placebo-controlled trial. Even when studied using this method, the contribution of proven therapies adds only a small amount (on average about 20%) to improvement compared to improvement that comes from meaning and context. The meaning factors produce the other 80% of improvement. Was the impact of the meaning response true for other chronic conditions? Was science missing the cause of improvement in areas other than pain?
CHAPTER 3
How Science Misses Healing
The science of the small and particular.
Is preventing two deaths from heart disease worth the cost to the ninety-eight people who will not get any benefit and the twenty people who will suffer major complications from a treatment? This is an ongoing debate in medicine about a real drug. To put the question bluntly: is preventing death in a few worth producing suffering in many? These are not easy questions to answer and are at their core not scientific questions. They are questions about values. Yet the way we do science obscures this discussion of values. Rarely are the details of the full risks and benefits of a treatment discussed with patients. Doctors and regulators just accept these questions as academic debates. And then plow through with their recommendations. Yet the uncertainty in bioscience is huge. If a patient is at high risk for heart disease, their likelihood of benefit outweighing harm goes up. If they are at low risk—like most of us—their likelihood of being more harmed than helped goes up. And we can’t tell ahead of time which category a person falls into. This dilemma confronts us not because the science is bad; rather, it’s because of the way we do science—seeking specific effects for particular biological targets that contribute to a disease and then using this information to treat complex, whole people who respond only partially in ways we want, and frequently in ways we don’t want. The problem, I discovered, is in the science of the small and particular. The very type of science that benefits us so well for acute disease now harms us when treating chronic disease. This is the consequence of a reductionist science that started with the invention of the microscope and continues with even smaller units of analysis, like single molecules in our genes. For all the power of this type of science, we have not appreciated the limitations and harm it also produces. In this chapter, I will explain how patients who found holistic paths to healing eviscerated my arrogance about the certainty of reductionist science and opened up my mind to discover how healing works.
AADI
Aadi had been tremor-free for more than a year—again. This was the third time he had been “cured.” A prominent businessman from Bangalore, India, Aadi had built a highly successful export business that made him quite wealthy. But at age fifty he developed Parkinson’s disease. Parkinson’s is a chronic and progressive disease in which vital nerve cells in the brain malfunction and die. Over time, the Parkinson’s sufferer is unable to control body movements. Aadi’s disease progressed rapidly, striking fear in him as he experienced the increasingly severe tremors and rigidity. Darkness descended over his life. He could imagine, he told me when I interviewed him later, all he had built—his business, his family of five girls and one boy, his prominent home and community life—all crumbling before him. He had to “fix it,” he said. So he channeled all the drive he had used to build his business into finding a cure. He made trips to the top Parkinson’s specialty centers in New Delhi, Bangalore, London, and finally the United States. They confirmed the diagnosis, and he ended up on two drugs designed to boost the chemical dopamine in his brain, along with an antidepressant that he didn’t like because he said it made it harder to think. These were all the therapies that have been proven to help in Parkinson’s. But Aadi experienced only moderate benefit from the treatment, reducing but not stopping the tremors and doing little for his advancing rigidity and sunken mood. Since he had the means, he looked even wider for possible cures, but all he found were some experimental treatments, such as implanting dopamine-producing cells or electrical devices into his brain. He was desperate enough to consider these therapies.
His wife intervened at this point. Seeing how the disease was ruining her husband and destroying their family, she was desperate, too, but she took a different approach to finding a solution. “You are Indian,” she would scold him. “You should go see an Ayurvedic doctor. It is the oldest medical system in the world—developed right here in this country. Why do you fly all over the world seeking a cure when the answer might be right under your nose?”
As a man stern in both business and family life, Aadi resisted. “I don’t want that quackery,” he said. He tried to ignore her. But he continued to deteriorate. So Aadi’s wife visited a local Ayurvedic hospital to inquire if they could treat Parkinson’s. They said they could help.
Ayurveda, a word that means “life-knowledge” in Sanskrit, is an ancient traditional Indian medical system—as Aadi’s wife had said, one of the oldest medical systems in the world—and is still being practiced widely in India t
oday. It is a prescientific system. Although its origins are likely more than five thousand years old, there has been very little research to verify its claims of healing. Like most traditional health care practices, it is widely used throughout India but less so by the educated and well-off like Aadi. It has been practiced on billions of people for thousands of years but has not been subjected to modern scientific evaluation. Aadi was skeptical when his wife suggested he try it, especially when the first step involved reading his astrological chart to help discern the “spiritual” forces contributing to his Parkinson’s. Aadi did not believe in any of that stuff, but his wife continued to insist that he go to an Ayurvedic hospital outside Bangalore and at least try it for a month. After all, she pointed out, he had exhausted all other options and had only gotten worse. Reluctantly, he agreed. That was six years ago.
When I met Aadi, he was about to be discharged from the Ayurvedic hospital for the third time. The hospital is a large complex with rooms and buildings over a number of acres in rural India, about five hours from Bangalore. In addition to simple rooms for patients to stay in overnight, it has temples, massage rooms, group yoga rooms, a large herbal garden and manufacturing facility, and a bath house where hydrotherapy and oil treatments were administered. In the last six years, Aadi had come to the hospital three times, staying four to six weeks each time. The first time he went begrudgingly. The second time, skeptically. This time, enthusiastically. Each time he had walked out largely symptom-free; his tremors were 90% improved, his rigidity gone, his energy improved, and his mood lifted. After each visit he could again focus on his business and family. This time, he had spent five weeks at the Ayurvedic hospital engaging in daily intensive treatments that touched all aspects of his mind, body, and spirit.