Sunday, March 4, 2012

Medical Writing: The Healing Power of Narrative

Today begins my 2012 journey to Australia for Culture Camp with the Gippsland and East Gippsland Aboriginal Cooperative. We continue our mission to assist them to incorporate more of their culture and heritage into their health care. Particularly, we hope to midwife a process of their discovering their own ways instead of just grafting onto their world the practices of the people from the Northern Territories who never lost their ceremonies and their language. However, Gippsland and East Gippsland are very different from the North. They are the farthest Southeast tip of Australia. Only the island of Tasmania lies any further East. They are a lake, ocean, and woodland people from a temperate climate where snow occurs in the winter in the high mountains. They are not people of the tropics. Their culture and language (Gunnai/Kernai) is different from those of the Northern Territories. Through a convergence of our delegation of Native Americans and of those from the Northern Territories and of those from Gippsland and East Gippsland, perhaps something magical will occur. Changes have occurred in our party. My colleague, Rocky Crocker, is still coming. He is a family physician who teaches in the Center for Integrative Medicine at the University of Arizona -- Andy Weil's program. He is also the President of our Board for the Coyote Institute for Studies of Change and Transformation, based in Brattleboro, Vermont. Rocky is Choctaw from Mississippi and talks like a real Southern gentleman. We were also going to bring two Lakota colleagues from South Dakota, but the woman had to have surgery and also couldn't come. Barbara Mainguy, however, could not come. She has come each year for the past three years. We are high over the Western New Mexico desert in a United Airlines flight from Albuquerque to Los Angeles. So Rocky and I will carry on for everyone. Beneath us are clouds and desert. No snow. The land is arid and dry -- so opposite of our home in Vermont. Melbourne will be in the height of summer, like the latter half of July in the United States. I've never been there in summer but I'm told that temperatures can top 40 degrees, though still not as hot as Tucson. My hottest day ever was +53 degrees one summer in Phoenix where we fried eggs on the car hood just because we could and mercifully spent most of the day in the swimming pool. I can't even remember why I was there anymore, but I was. We are coming from the Creativity and Madness Conference in Santa Fe, New Mexico. My talk was physician writers: the healing power of Narrative. Besides a marvelous Saturday night dinner, we spent most of our time preparing this talk. Our only other activities consisted of lunch with our friend Marga and her daughter. Marga is an amazing fitness expert and filmmaker who is currently unemployed thanks to the vicissitudes and foibles of St. Vincent Hospital in Santa Fe. She had been working there as a patient's complaints manager, but most of her department was "retired". I wondered with her who the hospital would get to talk the angry patients out of suing, since that had been her primary task. We wondered if the malpractice insurance premiums were perhaps less expensive than the salaries of people to prevent malpractice actions. We didn't know. We saw our friend, Amy Stein, who does a marvelous workshop for physicians and other health practitioners on how to draw a self-portrait. Amy has published a paper on her work in the Permanente Journal, a medical publication. It can be accessed at no charge by typing into google's search engine, "Amy Stein Permanente Journal self-portrait". In a beautiful place like Santa Fe, it's important to remind them that other places have beauty, also. We began with a quote from the physician, Anton Chekov, who said, "'Medicine is my lawful wife; literature is my mistress.'' I quipped to the audience, by the time we're done, "I hope you'll agree that Chekov should have said, as Dr. Tom Janisse (Editor of The Permanente Journal) said, "Medicine is storytelling; storytelling is medicine." Writing about our patients brings out the huge amount that is left unsaid in the encounter between physician and patient and physician and world. Writing allows us to be more than a clinical voice. It not only humanizes the patient, but also the physician. Current availability of media and access to ways of creating text is a revolution in medicine, allowing us now to write our clinical histories (stories) with our patients and allowing patients to edit and re-write those stories so that a rich, life-capturing document can emerge from the clinical encounter. Writing also allows us to manage the difficulties of medical practice. Writing the case story gives us more perspectives and awareness than we had before. Helping the patient to write his/her story reveals details and clarity never present before. It is also therapeutic (aka healing) for the person telling the story. I mentioned a 1999 study in the Journal of the American Medical Association in which writing about traumatic experiences helped people to make additional improvement over optimal medical management for both asthma and rheumatoid arthritis. For these people, storytelling is medicine. Engaging in this storying process also facilitates a more ethical and socially just relationship with patients because of the equalization of power that it entails and the respect the hearing people's stories creates. Then I made a humorous "black box warning" like the FDA does for drugs. James Gates Percival, an early 19th-century physician poet from Connecticut wrote: "If pleasure meet my ever-weeping eye, I see a demon lurking 'neath its flow'rs; The smile of joy but wakes the heavy sigh, And seems as sad as when the tempest low'rs" Diane Cox of the New York Times wrote that "Dr. Percival spent most of his life rejecting medicine for writing, then rejecting writing for medicine, all interspersed with nervous breakdowns and suicide attempts." So apparently writing doesn't work for everyone, though we could make the counter-argument that perhaps Dr. Percival would have succeeded at suicide had he not had poetry as an outlet. It's all in how you see the road: as leading to the bleak, horrors of winter, or toward the joys of another season's passage. Writing helps us get clear on that. Then I offered a poem by Mary Dowd, MD, from The Permanente Journal, Fall 2008. 12 (4): The door clangs shut. All eyes turn toward the diversion. The nurse and I walk in, two little female sticks, bobbing in a sea of men. Refresh Tag(s): Aboriginal; Culture; Healing; Language; Medicine; Poetry; Story; StoryTelling; StoryTelling; Suffering; (more...) Add to My Group(s) February 23, 2012 at 12:35:46 View Ratings | Rate It Promoted to Headline (H3) on 2/23/12: Permalink Medical Writing: the Healing Power of Narrative Add this Page to Facebook! Submit to Twitter Submit to Reddit Submit to Stumble Upon Tell A Friend Become a Fan SAVE AS FAVORITE VIEW FAVORITES Get Embed HTML Code By Lewis Mehl-Madrona (about the author) Become a Fan Become a Fan (22 fans) -- Page 2 of 5 page(s) futurehealth.org The room is large, but small, dimly lit, swarming with elbows, feet, faces dozens of men in orange scrubs talking, joking shoving, pushing pacing, roaming. The ceiling is high, but low, from two tiers up it presses down on me, filled with a gray-brown cloud, invisible, of something nameless, edgy, hostile and immeasurably sad. I feel the stares of men looking, and not looking at me wanting contact, conversation, attention, sympathy, distraction, anything, anything at all Wanting, so much wanting I feel it pressing in squeezing me bruising me like thumbprints, collapsing me. I shut down all my doors and windows and focus on a spot across the room Refresh Tag(s): Aboriginal; Culture; Healing; Language; Medicine; Poetry; Story; StoryTelling; StoryTelling; Suffering; (more...) Add to My Group(s) February 23, 2012 at 12:35:46 View Ratings | Rate It Promoted to Headline (H3) on 2/23/12: Permalink Medical Writing: the Healing Power of Narrative Add this Page to Facebook! Submit to Twitter Submit to Reddit Submit to Stumble Upon Tell A Friend Become a Fan SAVE AS FAVORITE VIEW FAVORITES Get Embed HTML Code By Lewis Mehl-Madrona (about the author) Become a Fan Become a Fan (22 fans) -- Page 4 of 5 page(s) futurehealth.org where a thin bar of sunlight filters through barbed wire to light a concrete court. I met Mary at a narrative medicine day for a literary arts conference at Goddard College. She works as a physician for the Department of Corrections in Maine. Her beautiful poem represents how physicians use poetry to make sense and meaning of difficult experiences. Then we looked at Kimberly Myers and Michael J. Green's paper from the Annals of Internal Medicine. January 18, 2011 (vol. 154 no. 2 129-130). They wrote how telling (and listening to) stories has long been held to have a positive effect on health. Narrative medicine studies suggest that telling others about one's illness can help ease suffering, by imposing a narrative order on frightening events. This was by way of introducing a paper by Thomas Houston and colleagues from the University of Massachusetts Medical School which was entitled "Culturally Appropriate Storytelling to Improve Blood Pressure: A Randomized Trial (same journal, pp. 77-84). They studied 230 African Americans with hypertension in an inner-city safety-net clinic in the southern United States. They provided people with 3 DVDs that contained patient stories about how people got their blood pressure under control, told by people who were very much like the patients who were watching the DVD's. The outcomes were changes in blood pressure for patients in the intervention versus the comparison group at baseline, 3 months, and 6 to 9 months. Most patients (71.4%) were women, and the mean age was 53.7 years. Among patients with baseline uncontrolled hypertension, watching stories statistically significantly reduced blood pressures. Patients with already controlled hypertension at baseline did not change over time between study groups. So writing and storytelling matters! Then I used the example of Oliver Sachs, best-selling author, physician, and professor of neurology and psychiatry at the Columbia University Medical Center. In 2007, he was named the first Columbia University Artist, in recognition of his contributions to the arts. He is best known for his collections of neurological case histories, including The Man who Mistook his Wife for a Hat (1985), Musicophilia: Tales of Music and the Brain (2007) and The Mind's Eye (2010). Awakenings (1973), his book about a group of patients who had survived the great encephalitis lethargica epidemic of the early twentieth century, inspired the 1990 Academy Award-nominated feature film starring Robert De Niro and Robin Williams. The New York Times has referred to him as "the poet laureate of medicine." Sachs is an example of turning case histories into literature and reveals much about how writing and literature can help us understand human suffering. Here's a short quote from The Man who Mistook his Wife for a Hat, which is an example of cortical blindness, in which a man "sees" without actually knowing that he sees. His optical system works and his brain works with it, but he has lost awareness of it because of a stroke. "And yet there was something a bit odd. He faced me as he spoke, was oriented towards me, and yet there was something the matter -- it was difficult to formulate. He faced me with his ears, I came to think, but not with his eyes. These, instead of looking, gazing, at me, "taking me in', in the normal way, made sudden strange fixations -- on my nose, on my right ear, down to my chin, up to my right eye -- as if noting (even studying) these individual features, but not seeing my whole face, its changing expressions, "me', as a whole. -- p. 9 ""Can I help?' I asked. "Help what? Help whom?' "Help you put on your shoe.' "Ach,' he said, "I had forgotten the shoe,' adding, sotto voce, "The shoe? The shoe?' He seemed baffled. "Your shoe,' I repeated. "Perhaps you'd put it on.' He continued to look downwards, thought not at the shoe, with an intense but misplaced concentration. Finally his gaze settled on his foot: "That is my shoe, yes?' "Did I mishear? Did he mis-see? "My eyes,' he explained, and put a hand to his foot. "This is my shoe, no?' "No, it is not. That is your foot. There is your shoe.' "Ah! I thought that was my foot.' Was he joking? Was he mad? Was he blind?" This passage gives us such a wonderful sense of what it's like to sit with someone who looks like they can see but can't actually see. The man eventually puts his hand on his wife's hair thinking it's his hat and tries to lift up her hair to put it on his head, which is how the story gets its name. On March 10th and 11th, I'll be in the Woodstock, NY area for a two day weekend workshop on narrative approaches to creating community through ceremony. On April 29th, I do a one week event at Kripalu Center for Health and Healing which involves Cherokee bodywork and ceremony and ritual. The details are on their website at www.kripalu.org.