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41st Annual Conference

Crested Butte Mountain Resort, Crested Butte, CO

February 19 - 24, 2011

Back to Basics, Putting the Humanities into Humanism:

An Experiential and Interactive Colloquium

Program Director:  Jeffrey M. Rothenberg, MD

The final program has fallen into place and is taking shape nicely.  But before I get to the meat of the program I thought that I’d start with a poem recently published by my medical school librarian, Fran Brahmi.  This came out in the August issue of the Yale Journal for Humanities in Medicine, which is an online clearinghouse for manuscripts treating the humanities and medicine and it serves to remind us that there are a lot of like minded people out there trying to make a difference in medicine utilizing the humanities. 

A Moment of Stillness

Creamy beige hearse
stationed at the
hospital back door,
patchwork quilt
shrouded her body.

The gurney
rolled and bent
at the knees
collapsed into
open doors
and disappeared.

About the Author    

Fran Brahmi is a poet and medical educator with an interest in both evidence-based practice and the role of writing and literature in medicine. She teaches a narrative medicine elective at the Indiana University School of Medicine for 4th year students and has actively been engaged with advancing humanistic studies and humanism within the medical school.  

2011 Program Outline

The following is an outline describing the different presentations all of which will keep the theme of utilizing the humanities albeit in very different ways to change medicine, by addressing the patient, the healer, or the system.   

Dr Barry Behrstock will be giving 2 separate presentations on different days.  His opening discussion will give his personal history and journey of how he has successfully integrated his interests in international medicine, photography, art/pottery/woodworking/architecture/glass and Pilchuck with life, learning and, indirectly, medicine, illustrated with slides but told through a series of  stories.  

The second talk will be about  his current project, one that is just starting to take shape and whose impetus was the invitation to present at SHIM—talk about SHIM making a different in how we think—our speaker has not even met us yet and we are already changing him!  This talk will focus and explore his personal interest in how life in general is interconnected, and cross connected, through an enormous variety of disciplines linked by a few simple, elegant underlying universal principles or elements.  As he wrote: "This theme is echoed throughout my book for those who choose to see it.   I hope to familiarize the audience with what they intuitively already know but may not be consciously aware of.  The experience of seeing or hearing will hopefully take on an "Ah ha" experience (did you know a large percentage of the y chromosome is a palindrome, i.e. the genetic pattern of DNA is an identical sequence of base pairs regardless of the direction read).  The areas discussed will include complexity science, chaos, randomness, fractals, emergence theory, symmetry, power laws, calculus, right and left brain theories,  Dao,  wave-particle duality and Godel to name a few.  His hope is that it will be of as much interest to the listeners as it is for him to learn about.  The fun part will be structuring the presentation so all of these come together but after you get a chance to see his book  I think that we are in for a real treat.  In the course of writing his latest book he wrote almost 60 essays which needed to be brought together in a manner that would be entertaining and consequently of interest to a reader,  and he wishes to thank SHIM for pushing him into a new project based on his previous work.   The title of the talk is, "Twice two is four, from cabbages to kings."

Dr. David Sasso, the Yale trained Pediatric psychiatrist has provided a synopsis of his 2 lectures which will focus on a music theme. "Music is a unique and universal domain of human ability that may be overlooked or underemphasized by parents, educators, and clinicians. In a multimedia presentation, participants will be introduced to typical musical development, from the fetus to the adult, and will learn about extremes of musical ability, from the prodigy to the tone-deaf.  We will then explore the healing powers of musical experiences through several ongoing projects at Yale University and in Connecticut: at-risk populations taking violin lessons, music teachers learning how to teach students with special needs, and an innovative program where adolescent inpatients in a state psychiatric hospital are creating and producing an original opera. These topics should spark a larger discussion about the possibilities and the pleasures of incorporating music and the humanities into one's life and clinical work.”  

Image from “The Trio of Minuet” a children’s opera by David Sasso

Joani Rothenberg, ATR  and my wife of the last 24 years, is leading her session on art therapy focusing on the question “Where and what are your fears and hopes as a healer, patient or support person?  An experiential application of art therapy will be undertaken with participants to get a real feeling of what and how art therapy works clinically, allowing each of us to personally experience the impact that this exciting modality may have on medicine.  She writes that “Art transforms what we know, what we see, what we feel and what we experience onto a visual plane. Art is born of a vision shaped by emotion and inquiry — and endures to inspire new and unimagined perspectives.” I am excited to be able to share with SHIM a wonderful aspect of my personal life which I think everyone will find fascinating.  

Joani Rothenberg, Public Mural Indianapolis JCC  

Dr. Greg Gramelspacher will be arriving from the annual meeting of the American Academy of Hospice and Palliative Medicine so he will have some fresh things to share with us from that meeting.  Dr. Gramelspacher, a medical ethicist and internist, says surveys show that eighty percent of people want to die at home if given the opportunity. The reality is that sixty-seven percent die in hospitals and seventeen percent die in nursing homes. "Being at home surrounded by loved ones and a familiar environment is the greatest desire of most terminally ill," Dr. Gramelspacher says. "I say why not make every effort to ensure they get what they want and, when possible, bring the clinical care to them."  Since it was established in July 1999, the palliative care program has helped hundreds of Indianapolis and Marion County residents, mostly indigent.   Dr. Gramelspacher and some of his patients were the focus of one episode of Bill Moyers' PBS series, On Our Own Terms, which examined how terminally ill Americans, their families and medical professionals deal with death.  He will also speak about “A Ride to Remember."  You may want to look at his Blog, which contains patient photos and stories (especially look at the tab called "Reflections on patient care" for patient/stories).   Dr Gramelspacher’s work has dealt a lot with photography so I encourage all budding photographers to bring some of their recent pictures (preferably electronically) so we can share them with the group—if we get enough I plan to put on slideshow that will be running continuously and updated throughout the meeting. 

Dr Greg Gramelspacher’s Ride to Remember  

Dr. Larry Cripe is a leukemia specialist and essayist and in addition to writing essays and poems published in JAMA and elsewhere, he  writes and reads Grace Notes, radio essays about end of life care aired on the nationally syndicated radio program Sound Medicine produced by WFYI 90.1 FM. His remarks and workshop will mirror his research interests which include physician-patient shared medical decision making near the end of life. He will take us on a literary journey as we learn how the written word can aid healers and patients.  He will use real life stories from the cancer wards at Indiana University to illustrate his work.  Participation is important and everyone is encouraged to bring any stories or poetry that they have written.  His latest essay published in JAMA in May is entitled, “Giving Up’’ and will give you a feel for his work.  

Giving Up      by Larry Cripe, MD

JAMA. 2009;301(17):1747-1748.

In a few moments Dawn (not her real name) would tell me her decision. Meanwhile the intern recited Dawn's vital signs, the list of her current medications, and her laboratory test results. I cut short the discussion about further tests, yet another modification of the antibiotic regimen, or seeking additional advice from our consultants. I was anxious to see Dawn. "Let's go in," I said, waving the residents toward the door. "If she is going home we’ve a lot to arrange. Snow is predicted up north." I slowly followed them into the room.

I was quite fond of Dawn. Seven years before, when she was first diagnosed with acute myeloid leukemia, she had already endured years of complications from type 1 diabetes and a kidney transplant. To her the AML was merely one more challenge. "Just tell me what I need to do," she said after I explained the treatment. And then she smiled what I came to think of as her "This too I can do" smile. Even at our lowest moments she would muster a wide dimple-punctuated smile, nod her head, and say, "All right, let's go." Her initial hospitalization was lengthy and complicated. Afterward it was months before she was able to live independently. But the remission held despite the subtype of AML and her inability to receive additional therapy. At the end of each office visit, assured by the evidence of a sustained remission, she would bring her hands together in prayer and then clasp and pump them into the air like a prize fighter, like the champion she was, and smile.

I gradually saw Dawn less often as the tests continued to demonstrate a remission and the likelihood of cure increased. Then three years later the disease recurred. Now, despite conventional retreatment and a subsequent treatment in a clinical trial, Dawn was not in remission. And her health had substantially declined during the months of retreatment.

Dawn's sister, mother, and companion were standing as we filed into her room. She was sitting on the edge of the bed, her chin resting on her chest. She looked up and began to speak in short gasps. She wanted to go home. She wanted the central venous catheter removed. She was not interested in further transfusions or antibiotics. I reminded her that we could easily arrange for care of the catheter and schedule transfusions at her local hospital.

"What's the point?" she asked. "This is not what I wanted. But, hey, this is what I got." After a few silent moments, surprised by the austerity of her requests, I bent forward and we embraced. "See you later," she whispered into my ear. I nodded. Then I walked out past the residents pressed against the wall. As I started down the hall to the next patient's room, the senior resident stopped me and asked, "Why are we giving up?"

It is not uncommon for me to hear the phrase giving up in my conversations with residents. "How do you know it is time to give up? Is there nothing else?" a resident might ask during a discussion about referring a person for hospice care. They, in turn, have heard similar questions in our conversations with patients or families. Clearly the plans for Dawn felt like giving up to the resident and maybe, on some level, to Dawn. How could it not have? The plans—no further chemotherapy, no antibiotics, no transfusions—were all about what we would not do. So the resident's question was a good question. And usually I would have taken a few moments to share my perspective.

On that particular morning, for whatever reason, I remained silent. Perhaps it was the resident's bruised expression or the sagging shoulders and distracted shuffling of Dawn's intern. Perhaps it was my grief that Dawn's life was drawing to a close or my surprise that she chose no further treatment, even though both were true to the person I’d known over the years and choices that I had encouraged. Perhaps I sensed that my usual discussion of the natural history of refractory AML, the disappointing results of further chemotherapy, and the need to balance risks versus benefit would have been less than reassuring.

Looking up at the waiting residents I finally replied, "Well, there are worse things than death."

"What?" the resident promptly countered.

"Let's move on. We have other people to see," I replied. I had wanted to respond, "Spend time with me and see what I see." But how much time would the resident have to spend with me? A month? A year? A decade or two? Would she ever see what I see, the way in which I see it?

I am drawn to the metaphor of a journey for the illness experience. My relationship with Dawn—our journey—began with the shared expectation that my expertise in the treatment of AML would be sufficient for her to live beyond the disease. In a sense, our journey was oriented toward the desired destinations of remission and cure. I was keenly aware of what Dawn endured as a consequence: the physical symptoms including debilitating complications of chemotherapy, the intrusiveness and discomfort of biopsies and other procedures, the long absences from her family and friends, and the uncertainty. She—as so many people do—trusted me to maintain a measure of reasonableness, which I define as a thoughtful expectation that the likelihood of benefit and the nature of the benefit would justify the risks or inconvenience of any therapy I recommended.

But I could no longer imagine that Dawn would not die soon no matter what I prescribed. Yet since the marrow aspirate had revealed refractory AML a few days before, my conversations with Dawn and her family had been more about the details of further treatment with chemotherapy or another investigational agent than about end-of-life care. As a result I had felt less than truthful—less than trustworthy—in those conversations.

So the night before Dawn left the hospital, I stopped by on my way home. I shared with Dawn my beliefs that she would never feel well enough to receive further antileukemia therapy and that she would die—perhaps sooner with treatment than otherwise—whether she received it or not. I tried to describe the future I imagined: more physical distress with the prolonged hospitalization and continued need for intensive supportive care, our greater sorrow and regret if there were still no remission, and more time, perhaps the rest of her life, away from home.

"I knew it," she replied. "I’m weaker than ever before. I sure can't take much more. Nothing seems to be helping anyway. But I’d like to sleep on it." After several moments of silence she continued, "As hard as it was for me to hear, it must’ve been harder for you to say it. Don't forget that."

Several years after Dawn died, I happened to reread a quote from Norman Maclean's Young Men and Fire, long pinned to the bulletin board to the left of my desk:

"In a journey of compassion what we have ultimately as our guide is whatever understanding we may have gained along the way of ourselves and others, chiefly those close to us, so close to us that we have lived daily in their sufferings."

From that moment the resident's question, "Why are we giving up?" became a different question for me: "Why do I not feel like I am giving up when I advocate end-of-life care rather than further chemotherapy?" In a phrase, I have prepared myself for journeys of compassion.

I have come to accept, during my 16 years as an academic hematologist, that I frequently do feel like I am giving up. How could I not? Is there any more profound choice we physicians make than to encourage persons with life-threatening illnesses to attend to their life goals with the explicit realization that life is ending? I was well aware, as I spoke with Dawn that final night, that some of my colleagues, many of whom I would trust with my life, would have recommended treatment that I, in good faith, could not. Thus it seems fitting to carry some sense of doubt if for no other reason than to honor the magnitude of the choices that confront us. There is no certainty.

I have also chosen to remain equally aware of the instances when continued aggressive therapy was of great harm. And I view harm in a broader context than the adverse physical consequences of treatment. I do not know whether Dawn suffered less by going home or whether she would have lived longer with aggressive treatment. I do know it is too easy to recall the few people who lived despite the odds. Shouldn't we physicians regret the loss of opportunity for a person to experience personal growth and to share time with those who matter most as life ends? Many of our patients and their families do. I believe to not fully comprehend the harm—or to lose sight of it—is to run the risk of not being fully trustworthy; that is, I may retreat into ambiguous or falsely reassuring language because of the uncertainty.

A few days before Dawn died we spoke by telephone. She was glad that she was looking out her windows, sleeping in her bed, and spending time with the people who had not been able to drive the distance to visit her during her hospitalization. She thought she might want a blood transfusion the following week if she were able to go to the local clinic. She’d let me know. But for the moment there was nothing she needed from me.

I am saddened to think I may have fallen short of the mark with Dawn. Did she feel she could call me only if she were interested in transfusions? Had our conversations toward the end of her life been too narrowly concerned with further therapy? To commit to journeys of compassion challenges me to remain fully aware of the experience—the suffering, the distress—of the person with a life-threatening illness who may be near the end of life whether or not I have an expectation of relieving the cause. I have become more mindful of the need to prepare myself to invest the energy and to accept the vulnerability of discerning, with people like Dawn, what would be important to accomplish if we accept that death is almost certainly inevitable and perhaps imminent. In the end, I have come to understand that those are the times when I need to be less of a physician in order to be more of one.

Katy Dickerson, a current fourth year medical student and originator of the Creative Arts Therapy Student Interest Group will be joining us directly from a 2 month rotation in Eldoret, Kenya (remember my talk about Eldoret several years ago?).  She will tell us about the successful grass roots approach to integrate more humanism into the fabric of the lives of our students, her peers.  Repeating verbatim here words from her facebook page:

Creative Art Therapy (CAT) has been created to familiarize future physicians with the role of the arts and humanities in healing. Students will gain experience working with diverse patient populations and practice incorporating the arts and humanities as an adjunct in healing.

Students will also have opportunities to explore various creative art forms for application in their own lives. Art therapy is based on the belief that the creative process involved in artistic self-expression helps people to resolve conflicts and problems, develop interpersonal skills, manage behavior, reduce stress, increase self-esteem and self-awareness, and achieve insight.

This Mural was painted by 36 medical students of the Creative Art Therapy Student Interest Group with mentors Jeff & Joani Rothenberg during an outing to the Indianapolis Art Center where students got the opportunity to paint, sculpt and make glass art

Finally, Ken Lemons will be speaking about his work with an MIT engineer on Musical DNA,  specifically a “music play along" game as a catalyst to growth and development.   He writes about this concept:  "Musical DNA was invented to help teach music and had (in the beginning) purely musical and educational roots.  But as we got farther down the path, we came to the eventual realization that we were looking at something far deeper than music: namely, mathematically precise, color coded, multi-dimensional geometry that could, conceptually, represent a new means of sound 'fingerprinting.  Our seventh patent has just been approved by the USPTO, on 'Sound Identification'--, that follows an approved patent in 'Speech Therapy'-- using  Musical DNA to help 'draw' and 'light up' the human voice.  While 2D interfaces are still used in hospitals for heart beat monitors, ultrasound machines, and seismographs, the Musical DNA interface simply contains more precise math for computers to display.  Musical DNA is always easier to show than to talk about, and I will enjoy bringing tangible, interactive demonstrations to help with people's understanding of this complex subject."—very interesting indeed.  

Ken Lemons

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I look forward to a very intellectually and emotionally stimulating meeting.  The wide variety of speakers combined with our common theme of “Back to Basics” should make every day special.  Great speakers, good friends, a beautiful setting and hopefully wonderful snow should make this a fabulous meeting.  Please help us in getting the word out and extend invitations to all your family and friends. 

Jeffrey M. Rothenberg, MD