Narrative Medicine “Closer” Close Reading In Practice

1384151134Over the past several weeks, in the narrative medicine (NM)  summer course I am teaching, we have been using the ‘closer’ NM close reading approach that I proposed in my last blog post: focusing on the elements of emotion, silence, surprise, and metaphor/imagery. I’ve also asked the students for written feedback on what it is like to use this closer reading technique, as well as how they envision incorporating what they learn from it into their practice as health care providers.

The course is offered through the innovative School of Interdisciplinary Arts and Sciences at the University of Washington, Bothell Campus. The majority of the forty students in my course are nurses, most with Associate Degree preparation, who are now in their BSN completion program (finishing the equivalent of a four-year undergraduate degree program). It is a very diverse class in terms of age, gender, country of origin, ethnicity, race, years of work experience within health care, etc. Earlier in the quarter they all read/learned/practiced Charon’s close reading drill for narrative medicine: frame (includes gaps/silences), form (includes metaphor/imagery), time, plot, desire.

For in-class practice of the closer NM close reading approach, I used various poems from Between the Heartbeats: Poetry and Prose By Nurses, edited by Courtney Davis and Judy Schaefer (U of Iowa Press, 1995). “Burnt-out Offerings” by Sandra Smith with the stanza “We have become/those old crusty nurses/we used to pity and avoid.”–and Courtney Davis’ haunting “The Nurse’s Pockets” both resonated strongly with the students. I also used Kelly Siever’s more nuanced “Breath” and “Between the Heartbeats.”

Students commented that emotion and surprise in the poems were the easiest and most immediate for them to identify, and that metaphor and silence “…need more digging to discover and are more challenging.” Many of the students said that silence was something they had not considered before, that they found it intriguing but difficult. Overall, students felt this NM ‘closer’ reading approach was less technical, “less reserved and detached,” and that it “comes more easily and is something I can see myself using in practice.” One student wrote: “I can see this being used with patient interactions. Taking time to asses one’s reaction to a patient statement or story can prompt further questions, clarify biases, and create deeper understanding.”

I’m still refining how I teach this closer NM close reading approach, and especially how to guide students in how to listen for the silences, for whose voices and perspectives are heard and whose aren’t, and why.

 

A Narrative Medicine “Closer” Close Reading Drill

DSC00673In the narrative medicine course I teach at the University of Washington I have been using Rita Charon’s narrative medicine close reading drill (as described in her chapter “Close Reading” from her book Narrative Medicine: Honoring the Stories of Illness, Oxford University Press, 2006). I was taught this  narrative medicine close reading drill in the workshops I have taken with Dr. Charon at Columbia University.

As she writes in the opening of her chapter on close reading, “Narrative medicine makes the case that narrative training in reading and writing contributes to clinical effectiveness. By developing narrative competence, we have argued, health care professionals can become more attentive to patients, more attuned to patients’ experiences, more reflective in their own practice, and more accurate in interpreting the stories patients tell of illness” (pg 107).

I was first introduced to narrative medicine in the fall of 2010 when I took the Narrative Medicine ‘101’ workshop at Columbia University. I wrote two reflective (and in retrospect, rather cheeky yet truthful) blog posts about my experience: “The Cult of Narrative Medicine” and “Postpartum Narrative Medicine.”  I stumbled into narrative medicine through my mid-life existential crisis of questioning the meaning of all my striving in terms of clinical practice and teaching nursing–and by practicing the mid-life crisis ‘cure’ by doing the Jungian thing of returning to my adolescent passion of reading (and writing). Then, using the crystal ball of Google searches, I discovered Rita Charon and narrative medicine.

That is the backstory. What I want to highlight in this blog post is my continual nagging–no niggling–suspicion that something is just not right with Rita Charon’s narrative medicine close reading drill. It has taken me years to be able to articulate what bothers me about her drill. I find that it is too cold, cerebral, intellectual; to practice it somehow further objectifies the ‘patient’ and holds them at arm’s length in order to dissect and measure. I have come to that conclusion by applying it to my own clinical practice as well as to my teaching of health professional students.

While trying to practice a ‘close reading’ of an actual patient and his or her story, I kept returning to the lesson of the Test Your Awareness video: “It’s easy to miss something you’re not looking for.” I became so wrapped up in noticing the minute details of what the patient was saying, that I missed the gestalt of the person telling the story. I also missed the fact that I was in a (professional) relationship with this person, that I was an active participant in the clinical encounter, and that I was being affected emotionally by this encounter: their story was ‘reading me.’  And in using this narrative medicine close reading drill with health professions students, I have found that they get all hung up with their anxieties over ‘doing this drill thing correctly’ as though I’m testing them on pathophysiology. (This applies to medical students who one would think have had a more liberal arts education, as well as to more ‘technical college’ nurses who have not likely had university-level courses). None of this can be viewed as ‘humanizing’ the practice of medicine.

What I find most compelling in narrative medicine or medical humanities more broadly, is the application of reflective (and reflexive, self-reflective, but not the ‘bathetic trip to nowhere of importance,’ sentimental, navel gazing variety) practice for health care professionals. My colleague, family medicine physician, teacher,  and writer Sharon Dobie has written about this in terms of the importance of self-awareness and mindful practice in relationship-centered health care (“Reflection on a well-traveled path: self-awareness, mindful practice, and relationship-centered care as foundations for medical education” Academic Medicine vol 82, issue 4, 2007, pp422-427).

I’m still in the process of refining my approach to ‘teaching narrative medicine,’ but here is my alternative to Rita Charon’s narrative close reading drill. My closer (to home) close reading drill:

  • Emotion: What do you feel while reading this (or while listening to this patient illness narrative)? What is the overall mood or emotional effect of the piece? And why do you think it evokes this particular response for you?
  • Surprise: What stands out to you the most? What is unexpected?  This is like Roland Barthes’ term ‘punctum’ in Camera Lucida, or as Arthur Frank puts it “what distracts you but is not the focus of the narrative.” (from a narrative analysis workshop I took with him at a qualitative research conference in Banff, Canada years ago).
  • Silence. What is unsaid in this? Whose voices or perspectives are included and whose are left out?
  • Metaphor (and it’s close cousin simile). The use of imagery and the poetics of the piece.

That’s it. The most important components of a narrative medicine ‘close reading.’ The next time I teach a narrative medicine course, I plan to use these as a close reading guide.

 

The Problem(s) With Narrative Medicine

booksNarrative medicine is growing in popularity in academic medical centers and healthcare settings. Developed over the past decade by physician and literary scholar Rita Charon and colleagues at Columbia University, narrative medicine (as defined by Charon), “fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness.” There are textbooks on narrative medicine (such as the one by Charon shown here), workshops, undergraduate courses, and masters degree programs in narrative medicine (the Program in Narrative Medicine at Columbia University), and even the venerable Modern Language Association is considering establishing a new forum related to narrative medicine (to be called Medical Humanities and Health Studies). I love narrative medicine and I teach narrative medicine, but I don’t love/teach it without having some serious questions and reservations about this whole ‘movement’ or religion as it sometimes seems to be.

Current narrative medicine discourse assumes an ideal encounter between an empathic physician and a cognitively intact, compliant adult patient. What does this mean for providers or for patients who fall outside these parameters? What does it mean for people excluded from health care? What does it mean to be attuned to the narratives, not only of individual patients, but also to the larger, often silenced metanarratives (grand narratives or ‘big granddaddies of stories’) of power and exclusion?

In its current form, narrative medicine allows little room for critical reflection or exploration of larger structural inequities and structural violence within health care, including those from the medical gaze (a term from Foucault to describe how modern medicine often treats patients as just a physical body, instead of treating the person who is ill or injured). Narrative medicine largely ignores the limits of narrative, especially within the contexts of trauma, suffering, and oppression. What I mean by this last statement is that there are times when people have experiences that don’t fit neatly into a story-line, a narrative of what happened. There are human experiences beyond narrative, and this is where poetry/metaphor and gesture can be more effective means of  personal meaning-making and communication. This is where Arthur Frank’s chaos stories can occur.

Even within narrative, we often have a rigid, scripted notion of what a good, straight, linear, satisfying (and effective) story arc should be. It is usually the hero slaying demons and dragons of some sort, having a nice masculine climax, and emerging at the end triumphant and transformed–and even stronger and more handsome! We want soft-focus lens Hallmark moments that make us feel all warm and cozy inside. As applied to the treatment of cancer, Barbara Ehrenreich’s hilarious yet disturbing essay “Welcome to Cancerland” (Harper’s Magazine, November 2001) is a terrific take on this topic.

I’ve been thinking about these problems recently in regards to my work with narrative advocacy/ policy narrative, and to my teaching of narrative medicine to nursing and other health professions students. Over the next month or so I’ll be writing a series of posts exploring ways to ‘do’ narrative medicine and narrative advocacy differently. I’ll also include a list of resources that I’ve found to be helpful.

The first resource I’ll make a pitch for is the work on narrative humility by physician and writer (and faculty member at Columbia’s Program in Narrative Medicine) Sayantani DasGupta. She recently wrote a brief essay, “Narrative Medicine, Narrative Humility: Listening to the Streams of Stories” for the journal Creative Nonfiction (Summer 2014). In her essay, DasGupta describes her work in narrative medicine as teaching people to listen,  “…(but) what I’m ultimately interested in is teaching people to listen critically, to listen in socially just ways. I want to teach healthcare providers to listen not only to comfortable stories, or stories of folks who are just like them, but also stories that challenge them, stories that are from the margins, stories that are traditionally silenced.”

Hear Hear!!

When Is It OK to Write About Patients?

DSC01479I write about patients; I ask my students to write about patients. I do this as part of reflective practice and with the knowledge that it can contribute to humanizing health care for patients, families, and health care providers. But writing about patients has to be done in a respectful way, with adherence to certain ethical and legal guidelines. By now we all know that it is not okay to write about patients in an identifiable way, and certainly not on social media platforms while in a knee-jerk, bleary-eyed state. But when is it okay to write about patients and patient care?

Many physician writers I know adhere to fairly strict personal guidelines to only publish stories about patients with the patient’s permission–preferably written permission. Rita Charon, MD of Columbia University’s Program of Narrative Medicine is a staunch advocate of this patient privacy ‘rule,’ as is my colleague at the University of Washington, Sharon Dobie, MD (see her excellent recent blog post “Writing About Patients”).  Nurse writers who I have talked to about this (like Theresa Brown, RN who writes for the NYT Well blog) point out that hospital hierarchies and power differentials make it much more difficult for nurses to be able to seek patient permission to publish a story about them. The nurse writers also make the case that in many clinical situations, tracking down former patients to seek such approval would itself be a breach of patient privacy under the federal HIPAA (Health Insurance Portability and Accountability Act) rules.

When I write personal narratives for publication I alter some biographical details of patients and change their names in order to protect their identities. I typically don’t change the names of co-workers and friends, and when I do I clearly indicate that in the text. My most recent published essay, “No Place Like Home(less)” (Pulse: Voices from the Heart of Medicine, 5-30-14), was really about me as the ‘patient’ and I purposefully left out names of co-workers since it wouldn’t have added anything (except length) to the essay. I avoid the use of composite patients (merging together details of two or more patients into one) because to me that enters the realm of fiction and I mostly stick to writing non-fiction. One recent exception to this though is my non-fiction/fiction piece “Steps to Footcare” (The Intima: A Journal of Narrative Medicine, February 2014). It was published as fiction because that’s the category I submitted it under. If I were to include it in a print book collection in the future (something I plan to do), I will most likely have it as a non-fiction essay with an explanation of how I crafted the essay.

Here are some current journal submission guidelines pertaining to writing about patients:

Pulse: Voices from the Heart of Medicine, Montefiore Medical Center and Albert Einstein College of Medicine:

Does your piece describe a patient? Pulse–voices from the heart of medicine is committed to protecting a patient’s right to privacy. Ideally, you will obtain written permission from any patient you write about; as an alternative, you must change his or her name and omit or alter other identifying characteristics. A reader should not be able to pinpoint a neighbor, friend or family member as the subject of your writing.”

The Intima: A Journal of Narrative Medicine, Columbia University Program of Narrative Medicine:

“Patient Privacy Notice
The Intima adheres to legal and ethical guidelines in accordance with academic and health community publication standards.  As clinicians, patients, and family members, we feel strongly that patient privacy and confidentiality be maintained at all times.  We simultaneously recognize that narrative power depends on intimate, singular encounters and the sharing of personal accounts in a respectful and safe environment. To maintain these standards, contributors should review the confidentiality guidelines in the Health Information Portability and Accountability Act (HIPAA), with particular attention to the 18 commonly accepted “unique identifiers.” We also encourage contributors to seek permission before submitting patient stories, and to fictionalize or change identifiable information whenever possible and appropriate to maintain patient confidentiality and privacy.”

 

American Journal of Nursing, Reflections (personal narratives):

“CONFIDENTIALITY Please use fictional names for all persons and institutions in your story. Locations may also have to be disguised.”

 

Storytelling for Policy Advocacy

PoppyStoryTimeWhen I tell people that my work focuses on narrative advocacy, they mostly look at me funny and ask, “What’s that?” It is a more concise way of saying ‘storytelling for policy advocacy.’

A common definition of narrative is a story with a teller, a listener, a time course, a plot, and a point. Storytelling is as old as campfires and cave-dwelling. (The photo here is of my father telling Appalachian ‘Tall Tale’ stories to his grandchildren). Storytelling is how we learn about our world, about ethical living, about history, about ourselves. Within the healthcare arena patients and family members tell their stories to nurses and doctors and other members of the healthcare team. It is still a truism that something between 80-90% of the information needed to make a correct medical or nursing diagnosis comes from the patient’s history, from their story.

Storytelling and story-listening are not only important at the individual patient level. They are also important at the community and public health level. Stories can be effective ways to educate and persuade the public and lawmakers on a variety of health and policy topics. Storytelling  (pathos) is part of Aristotle’s three essential components of rhetoric: the art of persuasion. The other two components of rhetoric are logic/reasoning/facts (logos) and the credibility of the speaker (ethos).

Several years ago at The Examined Life: Writing and the Art of Medicine Conference at the University of Iowa, I co-led a workshop “Narrative Advocacy: Writing Lives, Making Changes.” My co-leaders were Marsha Hurst, PhD, a core faculty member in the Program in Narrative Medicine at Columbia University, and Carol Levine the director of the United Hospital Fund’s Families and Health Care Project in NYC. Here’s the abstract of our workshop, which I still refer back to as my own guide and articulation of what I am passionate about:

“Narrative advocacy is the practice of using narrative competencies to advocate for improvements in care. It involves moving beyond the individual stories, to include the connections made within the wider community, and acting upon common interests in order to effect positive change in clinical care, in institutions of caring, and in health policy. In the U.S. there is a long history of health advocacy built on narratives of lived experience of illness and disability, and more recently, grassroots narrative advocacy has expanded through the use of social media. For health care providers and students in the health sciences, narrative advocacy can be a powerful avenue for engagement in health policy because it connects the unique individual experiences with larger issues. As powerful as narrative advocacy can be to engage and persuade policy-makers, it can and has been misused. It is important to have both knowledge and skills in how and when to use narrative advocacy responsibly and ethically.”

This past week I had the opportunity to participate in an excellent online training “The Role of Narrative in Public Health” sponsored by the Center for Digital Storytelling located in Berkley, California and facilitated by Amy Hill. She gave four reasons personal stories are so powerful: 1) stories are universal and typically follow a familiar structure, 2) stories are intimate and touch the heart in a way facts/figures can’t, 3) stories are honest and aren’t as slick and sensationalized as they often are in journalism, and 4) stories don’t (typically) tell us specifically what to do. The Center for Digital Storytelling uses a participatory media and group process to help people create and share their personal stories. Working in groups makes the individual stories more powerful, and the process can be empowering and healing for the participants.

The Center attends to the ethical practice of digital storytelling (would be the same for any type of narrative/storytelling work I think). They ensure storyteller well-being, use principles of cultural humility, and adhere to a set of guidelines in working with people impacted by trauma. They point out that consent is an ongoing process, that the question of story ownership and of sharing and distribution of the stories should be clearly addressed from the very beginning of the project. Amy showed us several powerful digital stories from their various projects. My favorite was on motherhood and women’s rights from their “Silence Speaks” project: Dear Ayhan by Rawan Bondogji. A perfect story for Mother’s Day. It is beautifully done.

Here are some additional narrative advocacy pieces that I use in my teaching:

 

 

 

 

 

 

 

The Intima: A Journal of Narrative Medicine

Celebrity Docs and the Ick and Quack Factor

"Beware of Quack Doctors"
(Photo credit: Courtarro)

Today on a listserve I am active on, a health reporter from Florida wrote that she recently received an e-mail invitation from a marketing firm basically bribing her to write a blog post on Dr. Colbert. The offer was for $5 for a 100 word ‘unique content’ blog post about Dr. Colbert. The offer also included a $25 dinner certificate (Florida Blueplate special anyone?) and the “opportunity to earn commission on each and every sale you generate.” I knew about–and have fended off–blogging bribes/product placement like this, but the bribes I get are nursing school related. I hadn’t realized that physicians as ‘brands’ had gotten into this. Silly me: everything in our country seems to be for sale. Never having heard of Dr. Colbert or what he sells, I looked him up.

From his website (based in Orlando, Florida and purposefully not linked here) , Dr. Dan Colbert states he is “board certified in Family Practice and practices Anti aging and Integrative medicine.” You have to dig for that though as what first pops up on the website is “Cyber Monday Extended! 20% off! This Christmas give them the gift of health!” with a photo of the tanned, fit, blond-haired Dr. Colbert holding out a wrapped Christmas present to an adoring crowd of people all reaching for it. He sells many products including vitamins, nitric acid capsules, weight loss drops, and green coffee bean extract. As a description for each he includes dubious health claims such as: “Reduction of and sometimes complete recovery from food-related and seasonal allergies” and “Provides detoxification of heavy metals, pesticides, and other toxins that may accumulate over time.” There’s the ever so tiny * at the bottom of the page with the oddly worded disclaimer: “These statements have not been evaluated by the Food and Drug Administration.”

Dr. Colbert is the author of many books (also for sale on his website), including What Would Jesus Eat? The Ultimate Program for Eating Well, Feeling Great, Living Longer. (Proving that anything can be published in our country). Not surprisingly, he obtained his medical degree from Oral Roberts University and he holds no academic appointments. I won’t get into details here, but he has had several fines and reprimands by Florida Health/Medical Quality Assurance, the professional licensing body of Florida (available to the public on their website). And he (of course!) has appeared on the celebrity doc/ick factor Dr. Oz show. Dr. Oz of the “how many orgasms does it take to have per year to be healthy and live to old age?”  (I think the correct answer is 200 and as our year is running out, get busy!) Dr. Oz of the TV episode “Dr. Oz’s 13 miracles for 2013” that included his endorsement for red palm oil as an anti-aging remedy. Dr. Oz, a Harvard-trained Columbia University cardiothoracic surgeon who consults with psychics on his show and seems to take them seriously. Does anyone remember that Oz was a very fake wizard in a very green place with a very yellow-(gold)brick road?

Who exactly is supposed to be monitoring the professional practices of these “mediatainment” “mega-brand” physicians? (quotes from the article below).

For an excellent critical reflection article on Dr. Oz and his ilk, I highly recommend you read Michael Spector’s New Yorker article “The Operator: Is the Most Trusted Doctor in America Doing More Harm Than Good?” (Feb 4, 2013).

* I suppose I could, but will not, submit this blog post  to the “Dr. Colbert Paid Blogger Opp + More” in order to receive my $5 and $25 Florida Blueplate  special. My elderly father in Florida will have to get something else for Christmas this year. And it won’t be What Would Jesus Eat? either….

** I am aware that even negative publicity is publicity. Dr. Oz needs no publicity and I tried to minimize/eliminate direct links to Dr. Colbert in this post.