"The Spirit Catches You And You Fall Down" (2012)

          To prepare for the trip, there was a requirement that I read a book from a list provided to us. The book that I chose, "The Spirit Catches You and You Fall Down", was written by Anne Fadiman. Fadiman tells the account of Lia Lee, who is a Hmong child suffering from epilepsy. Lia's treatment is in the hands of both her traditional refugee family from Laos and the abilities of modern medical doctors at a hospital in California. Her family believes in more traditional medicine. Doctors have miscommunications amongst Lia's family, and Lia's family is noncompliant with western medicine methods. This is shown by their reluctance to allow doctors access to Lia at first, and not giving her seizure medications when she needed them later. Additionally, there are language barriers in place. Lia's family rests on the system when it comes time for payment of services rendered. Child services comes into the picture at one point and forcibly removes Lia from her family. At the end of Lia's story, ultimately, the clash results in Lia's comatose state (brain death). The book promotes cultural sensitivity. 

          I also read another book entitled "Do You Believe in Magic?" by Paul A. Offit, M.D. last month. Offit is a self-proclaimed medical expert and health advocate who writes an "impassioned and meticulously researched expose of the alternative medicine industry" (from the dust jacket's inside cover). Offit goes into detail about multivitamins being tested in clinical trials and being shown as not having clinically significant differences; acupuncture; medical personalities that are given wide coverage on daytime television but are interested only in making a profit, etc. He also discusses the placebo effect. His bottom line was that it was morally repugnant to seek alternative therapies which are not tested and can even cause harm/death to the patient over medicines which have been subject to RCTs. He explains that if there is no harm to the patient done, and the family of the patient doesn't become bankrupt as a result of the alternative treatment, there is no problem in trying out "alternative" medicine. He clarifies though that "there is really no such thing as alternative medicine: there's only medicine that works and medicine that doesn't."

          Yesterday when Dr. Offiong Aqua gave us a brief overview of medicine in West Africa, he said that the middle class (if there even was one) had better access to private hospitals and were consumers at the local medicine stores (if they even had them). Only the very poor relied on traditional medicine. Lia Lee is an example of a very poor immigrant whose family relied on the Hmong religion/medical standards. It was interesting to think of what could have become of her had she been the child of a wealthier family who had better access to medicine. They also immigrated in the 80's -- nowadays, I would be willing to bet her family would be more integrated into American culture. Social standing and assimilation are both factors which I felt contributed to Lia's family's perspective on her care.

          Lia Lee’s plight is relevant to disability. It was easy to see why the book had been chosen as a prerequisite read for taking this course. I had first heard of it when Professor Perr promoted it in my first-year class “Foundations of Occupational Therapy.” Intrigued, I picked it up and read it at that time. Working amongst different cultures is something that intrinsically fascinates me. Is there some way that an excellent therapist can be a diplomat for western medicine and provide some room for a traditional family to also add their views into treatment? Looking for an answer to that question is complicated. The book mentions one possible solution, saying that a better approach would be to apply “a little medicine, and a little neeb.” (Neeb refers to Hmong traditional religious treatment.) Provided that no harm is done, I feel like this is the best way to give holistic care to patients. I hope that by being exposed to cultures I am not familiar with I can learn to communicate and balance on this fine line. Overall, it would improve my abilities as a practitioner.

          I feel like I cannot rephrase the extremely eloquent epilogue of Offit’s book, so I am going to take the liberty of quoting it here for its relevance to both Lia Lee’s story and alternative medicine:

          “Albert Schweitzer was a musician, philosopher, theologian, and physician. In 1912, using his own money, he established a clinic in Lambaréné, Gabon, in western Africa. Within nine months, more than two thousand natives had come to see him. Schweitzer gave them quinine for malaria, digitalis for heart disease, and salvarsan – the first antibiotic – for syphilis. When patients came to him with strangulated hernias or abdominal tumors, he anesthetized them with chloroform and treated their pain with morphine. Albert Schweitzer brought modern medicine to a small part of Africa.

          Toward the end of both of their lives, Normal Cousins, author of Anatomy of an Illness, met Albert Schweitzer. “At the dinner table of the Schweitzer Hospital at Lambaréné,’ wrote Cousins, ‘I had ventured the remark that local people were lucky to have access to the Schweitzer clinic instead of having to depend on witch-doctor supernaturalism. Dr. Schweitzer asked me how much I knew about witch doctors. I was trapped by my ignorance. The next day the great doctor took me to a nearby jungle clearing where he introduced me to an elderly witch doctor.’

          ‘For the next two hours, we stood off to one side and watched,’ recalled Cousins. ‘With some patients, the witch doctor merely put herbs in a brown paper bag and instructed the ill person in their use. With other patients, he gave no herbs but filled the air with incantations. A third category of patients he merely spoke to in a subdued voice and pointed to Dr. Schweitzer.’ On the way back, Schweitzer interpreted what they had seen. The first group of patients had minor illnesses that would resolve on their own or for which modern medicine offered little. The second group had psychological problems treated with ‘African psychotherapy.’ The third had massive hernias or extrauterine pregnancies or dislocated shoulders or tumors – diseases the witch doctor couldn’t treat – so he directed them to Dr. Schweitzer.

          Schweitzer described the value of the witch doctor. ‘The witch doctor succeeds for the same reason the rest of us succeed,’ he said. ‘Each patient carries his own doctor inside him. They come to us not knowing the truth. We are at our best when we give the doctor who resides within each patient a chance to go to work.’

          In Gabon, both Albert Schweitzer’s modern medicine and the witch doctor’s ancient medicine had their place. Schweitzer offered specific treatments for treatable diseases, and the witch doctor offered placebo medicine when nothing more was necessary or available. Both recognized the value of the other. Such is the case with today’s mainstream and alternative healers: both have their place. The problem comes when mainstream healers dismiss the placebo response as trivial or when alternative healers offer placebos instead of lifesaving medicines or charge an exorbitant price for their remedies or promote therapies as harmless when they’re not or encourage magical thinking and scientific denialism at a time when we can least afford it.

          As consumers, we have certain responsibilities. If we’re going to make decisions about our health, we need to make sure we’re not influenced by the wrong things – specifically, that we don’t give alternative medicine a free pass because we’re fed up with conventional medicine; or buy products because we’re seduced by marketing terms such as natural, organic, and antioxidant; or give undeserved credence to celebrities; or make hasty, uneducated decisions because we’re desperate to do something, anything, to save ourselves and our children; or fall prey to healers whose charisma obscures the fact that their therapies are bogus. Rather, we need to focus on the quality of scientific studies. And where scientific studies don’t exist, we should insist that they be performed. If not, we’ll continue to be deceived by therapies whose claims are fanciful.

          Making decisions about our health is an awesome responsibility. If we’re going to do it, we need to take it seriously. Otherwise, we will violate the most basic principle of medicine: First, do no harm."