Story Listeners are part detective, translator, and healer. My placebo effect stories involve a different definition of placebo.
Most of us associate placebo with dummy pills or something other than the real thing. Placebo may be used in a research project where one group has the real thing and the other a placebo. Both groups are told the same thing so neither is aware who has the placebo.
My story begins in an unrelated way. I received a request from Jane Estrata to send several papers Gordon Roberts had written. Gordon had been at the Vanderbuilt Hospital for medical care under a Dr. Roberts for shy dragger syndrome. The syndrome, a rare disease of the autonomic nervous system is similar but different from Parkinson’s disease. Gordon gave me his papers before his death. Jane was doing a research project for Dr. Roberts, collecting articles patients had written. They hoped to publish a book, the first half explaining the medical perspective and the second half would include the articles by patients. In our phone conversation I said I had a question. How about asking the people with shy draggers syndrome what word they use to describe their condition. I knew this was a long shot and not part of the protocol. Six months later I received a call from Jane saying she was asking the question and most were replying, “stumbling in the dark.” The shy dragger patients begins to stumble as a drunk when the start walking and their blood pressure drops. Super specialists stumble in the dark as well since they do not understand this illness. They can only treat the symptoms. The next most frequent answer had to do with the hand they had been dealt. Like in the cards they had been delt, a more fatalistic metaphor.
Jane obviously passed this on to the person who was in charge of the Shy Dragger support group. I received several calls from her that resulted in a trip to Phoenix to talk to the support group about metaphors. The unique feature, they met at the same time as the International Autonomic Neurology specialists from around the world.
Guess who was there? Dr Roger Bannister, the man who broke the four minute mile. He was a neurologist in England specializing in shy dragger syndrome. He was on a panel that spoke to the support group including both patients and caregivers. They received an update on the latest medical findings, which didn’t seem to be much. The discussion was enlightening just the same.
Later as I was going out the entrance to the motel I met Dr. Bannister who was standing there. I introduced myself and said I had a question. He gave me permission to ask. “I work with volunteers in the hospital who listen to patients stories. And on occasion they have mentioned how a darkness in the face will become lighter as their story is shared. What is going on in the autonomic nervous system to bring about the change.” He said without hesitation, “The placebo effect.” Someone came up and interrupted our conversation. I am left with this two-word answer that doesn’t make any sense to me. That was my last and only chance to engage Dr. Roger Bannister. However, I filled the word for future reference hoping to understand some day. I had a clue without a catch.
Because of my role as a chaplain and a department manager I received a hospital management magazine with management articles as well as a few by physicians and nurses. One physician wrote a monthly column. A year later he had a column on “the placebo effect” where he says doctors in England have a different definition. He referenced an article from the English medical journal Lancet. I checked with the medical librarian and now I have the whole article. The core of the English definition is this, “The relationship the doctor has with the patient is equal to the treatment being given.” Aha! The stories Befrienders are hearing that bring about non verbal changes is this relational component the English call the placebo effect. It was this effect that allowed the volunteers and non professionals to become part of the Samaritan suicide prevention program.
This is an exciting breakthrough for a detective that has been wondering what to do with the clue “placebo effect.”
Then I heard about Dr. Herbert Benson’s book “Timeless Healing.” He wants to redefine the placebo effect with a down to earth application of the English definition that has a direct physiological benefit. However, he is translating the term, moving the definition to a new place. The change will require both professionals and non professionals to think differently about some basic realities.
I bought the book before one of our Thanksgiving trips to family in California. The book was a good read on the plane going and on return. On return we stopped at Las Vegas where my aunt was living in a nursing home.
Herbert Benson calls his story approach “Remembered Wellness.” Placebo is redefined as "remembered wellness" (Benson, p. 20-1). When people tell their story they can move from sad times to good times and in so doing they engage in self care from a health standpoint. This is “Remembered Wellness.”
“The placebo effect yields beneficial clinical results in 60-90% of diseases that include angina pectoris, bronchial asthma, herpes simplex, and duodenal ulcer. Three components bring forth the placebo effect: (a) positive beliefs and expectations on the part of the patient; (b) positive beliefs and expectations on the part of the physician or health care professional; and (c) a good relationship between the two parties.” (Benson and Friedman, p. 193)