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.

 

Where Community Health Nursing Has Taken Me

DSC01485I’m into the power and nuance of stories and storytelling and lately have been focused on digital storytelling (DST). I have some of this content in my Soul Stories project section on this website, but I also wanted to expand upon it here.

DST refers to short video segments (typically 3-5 minutes in length) personal narratives that incorporate digital images, music, and voice-over narration by the person making the video. They are typically created within a workshop-based process that includes a Story Circle to share, critique, and refine stories-in-progress. Developed in the early 1990s by media/theater artists Dana Atchley and Joe Lambert and promoted through their Center for Digital Storytelling (CDS), DST has been used for public health research, training, and policy campaigns (such as the Silence Speaks campaign); community building (such as the BBC Capture Wales program); literacy programs; and reflective practice with health science students. DST is increasingly used as an innovative community-based participatory method that is especially effective at informing program planners and policy makers about the lived experiences of marginalized people.

Here is an example of a DST video “My Story of Community Health Nursing” that I made recently using the user-friendly storyboard style video editing software program  WeVideo.  My aims in doing this short video were: 1) to try out the WeVideo software (they have a free version, but they include an advertisement at the end of those videos), and 2) to tell the story of where community health nursing has taken me over the past thirty years. I purposefully kept it fairly low-tech and no-frills, didn’t try to add layered music or sound effects or fade ins, and I made this DST video without the use of a group Story Circle setting. I made it using my MacBook Air and its built-in microphone. It took me about two full days to produce the video, but that included the storyboard work as well as learning to use the WeVideo editing tools (which are really quite easy and they include helpful instructional videos). This would be a great resource in teaching (they have an educational platform that includes the requisite student privacy/protections).

I plan to do a second version of this soon within an ‘official’ DST Story Circle setting with more professional sound equipment to try out that experience. One of the critiques of the ‘official’ DST workshop model is that the workshop facilitators typically impose the use of a traditional, linear, redemptive storytelling narrative; this can exclude people and stories which do not fit this model. Researchers and DST practitioners such as Worchester call for use of a more flexible, co-created space for DST, including how narrative parameters are established in the workshop (Worchester, Lara. “Reframing Digital Storytelling as Co-Creative.” IDS Bulletin 43.5 (2012): n. pag.).

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!!

Women Writing Dangerously

IMG_0404 - Version 2Here’s my favorite excerpt from Washington State’s poet laureate Elizabeth Austin’s powerful poem “The Girl Who Goes Alone” (From her collection Every Dress a Decision, Blue Begonia Press, 2011):

“I walk into the wilderness alone because the animal in me needs to fill her nose
with the scent of stone and lichen,
ocean salt and pine forest warming in early sun.

I walk in the wilderness alone so I can hear myself.
So I can feel real to myself.”

You can watch Elizabeth reading the entire poem at the Hedgebrook Rising! Town Hall Seattle, April 9, 2013 here. She is an amazing poet and an awesome performer. I’ve had the opportunity to take voice coaching from her on ways to strengthen my ‘spoken word’ performance–something that doesn’t come easily to me. The most useful bit of advice she gave me and that I now use as an internal mantra before I read publicly is “It requires you, but it’s not about you.” A calling up of the muse I suppose but it often helps.

Creating a safe space in the wilderness for ‘women writing dangerously’ is what Seattle-area philanthropist Nancy Nordhoff had in mind when she opened Hedgebrook on Whidby Island near Seattle twenty-five years ago. She recruited Gloria Steinam to be on the advisory board and Steinam has written most of her memoir there. It’s an old farm on Useless Bay that has six cozy cabins which house a stream of women writers in residence. The Hedgebrook staff treat these writers to what they call radical hospitality. They provide food and lodging and protected time and supportive space in which to write. As Steinam says of Hedgebook, it is a place that nurtures women’s voices, a place that creates both personal and political change: it is important for the world to hear from women (and to be open to listening to them.) The Friends of Art Zone created a lovely 25 minute documentary on Hedgebrook that you can watch here.

I am honored to have been given a three week writer in residence stay at Hedgebrook this fall and am busy planning my dangerous writing. Hedgebrook is committed to nurturing a diverse community of women writers from across the globe. If you–or someone you know–is a woman writer in need of some radical hospitality, consider applying for a Hedgebrook Writers in Residence award (deadline: September 3rd) or come to one of their onsite master class retreats. You can also order a copy of their new cookbook Hedgebrook Cookbook: Celebrating Radical Hospitality (SheWrites Press, 2014). Their food is reportedly amazing. And for those of you on the East Coast, there’s now a Hedgebrook spin-off in Brooklyn called Powder Keg (writers Holly Morris and Sharon Lerner, co-founders and Hedgebrook alums.)

The photo here is of a sunset at Olga Bay on Orcas Island where I try to take an annual solo writing retreat.

Call the Midwife! The Hobby Lobby Won

Call_The_Midwife_2433160b“A woman’s right to control her own body is taken for granted now, and younger people can scarcely believe that abortion used to be a criminal offense, punishable by a prison sentence for the woman and the abortionist,” wrote Jennifer Worth in her article ‘A Deadly Trade’ (The Guardian, 1-5-2005).

Jennifer Worth worked as a midwife and district nurse in London’s impoverished East Side neighborhoods during the 1950s. She lived with and worked alongside the Anglican nuns/midwives from the Community of Saint John the Divine (the Midwives of Saint Raymund Nonnatus in both her memoir and BBC series Call the Midwife.) In this time before effective birth control and legal abortions, the women she cared for had multiple, closely-spaced, and often unplanned/unwanted pregnancies. Of course, women from higher socioeconomic levels had access to to safe (if not legal) abortions. From what I have read, through her work as a district nurse and midwife, Jennifer Worth became a deeply committed Christian as well as an outspoken supporter of women’s reproductive freedoms, including the right to safe, legal abortions. Showing that these do not need to be mutually exclusive.

I am currently besotted by both the BBC series Call the Midwife and the trilogy of Jenifer Worth’s memoirs (Call the Midwife, Shadows of the Workhouse, and Farewell to the East End). I plan to use some of the Season 1 episodes of Call the Midwife next week for the summer quarter narrative medicine course I am teaching, and I envision using some of the episodes in future community health nursing courses. The series depicts many of the same–or similar–community health nursing issues that are still pertinent today and within the U.S. context. Of course, the Call the Midwife series also includes some of the early developments of Britain’s National Health Service, which for us in the U.S. seem oh so progressive (or is it oh so socialist?)

How is it that women’s reproductive rights in our country seem to be going backwards–oh so retro?

I just turned 54 and am blessed with having ‘come of age’ during a time of reasonably decent access to effective birth control and safe, legal abortion services. Similar to my belief in the germ theory, I took it as a given that these same (or better: more male methods of birth control anyone?) advancements would be available to my children and all future generations. Sure, I’ve had the mass mailing dire prediction/requests for donations from Planned Parenthood, and I’ve followed the legal retrogressive shenanigans in many of the Bible Belt states, but I never thought it could really touch me all the way out here at the far edge of North America, in the true blue area of Seattle. Until this week’s news of the Supreme Court ruling in favor of the (seriously–where did they get this name?) Hobby Lobby. To paraphrase Martin Niemoller: “First they came for the poor women of Texas—and I didn’t speak out.” Shame on me.

My U.S. Senator Patty Murray sent me an e-mail saying she’s furious about the Supreme Court ruling and vows to fight it, although I’m not exactly sure how she plans to do this. But I gave her some money, perhaps so she can buy another pair of tennis shoes to march through the halls of Congress and kick some butt. You go girl! I am very happy to live in a state with so many women in key government positions. Our country would be better off with more women in key government positions.

The American Nurses Association issued a statement condemning the Hobby Lobby ruling, stating:

“The Affordable Care Act sought to provide millions of Americans access to basic health care and preventive services, including contraception, and essential component to women’s health. However, this ruling places an unfair burden on women, particularly those with lower incomes, who may not be able to access medically appropriate contraceptive care due to the additional expense.”

Julie Rovner wrote a nice, yet disturbingly Kafkaesque,  article “Did the Supreme Court Tip Its Hand on Contraceptive Cases Yet to Come?” yesterday for Kaiser Health News.

What will you do when the Hobby Lobby (or the Conservative male Supreme Court Justices) come for you–or your loved ones? Calling the midwife won’t work by then.

Addendum: The National Women’s Law Center launched the CoverHer hotline to help women who are having trouble getting access to women’s preventive health services – especially contraception – at no cost to them. The user-friendly hotline provides personalized instructions on how to navigate the health insurance process to ensure women get the coverage for preventive services they are guaranteed under the health care law and includes critical follow-up to track the results.

The Center will use the aggregated data it collects from CoverHer to identify systemic problems with implementation of the ACA’s birth control and other preventive health benefits and will use its advocacy and outreach efforts to overcome these obstacles. CoverHer builds off of the Center’s former Pills4Us hotline, which helped hundreds of women obtain the birth control that they needed.

Website: www.CoverHer.org

Hotline number: 1-866-745-5487

 

 

 

 

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.”

 

Got Medicaid (Expansion) Virginia?

DSC00367_2My hometown of Richmond, Virginia is fond of putting large statues of white men on horses in the middle of its streets. Richmond is also the setting for a political and health care drama of Southern Gothic proportions. Virginia is an ACA non Medicaid expansion state, but the state’s leaders have been debating Medicaid expansion over the past year. Earlier this month Phillip P. Puckett, a Virginia Democratic state senator, suddenly resigned to take a job on the Virginia tobacco commission. Curious circumstances surrounding his resignation have led to an investigation by the U.S. Department of Justice and the FBI, as reported in this recent Richmond Times Dispatch article. His resignation flipped control of the Virginia State Senate to Republicans intent on blocking Medicaid expansion efforts. Today Virginia Governor Terry McAuliffe announced his plan to bypass the recalcitrant Republican General Assembly and expand Medicaid to 400,000 low-income Virginia residents. (see: Modern Healthcare Va. Governor to Bypass Lawmakers, Expand Medicaid, 6-20-14). Governor McAuliffe also plans to block funding a $300 million facelift of the Capitol complex where many of the lawmakers have their offices. The bright and shiny Virginia State Capitol is shown in this photo I took about a year ago.

Medicaid plays vital roles in people’s lives and in our health care system. Medicaid improves access to basic health care services for millions of our children, low-income adults, the elderly (long-term care services), and people with disabilities. Medicaid saves lives. Medicaid funds large portions of our public hospitals, health centers, and nursing homes. Without Medicaid, most of our children’s hospitals would be forced to close.

Several of my struggling small business owner nieces and nephews who live in Virginia would benefit from Virginia’s Medicaid expansion. My elderly father who lives in Richmond would benefit from Medicaid expansion for long-term care services not covered by Medicare. My own son who lives in our Medicaid expansion state of Washington is about to get Apple Health, our version of Medicaid because the University of Washington has ended their student health insurance plan–or at least what was masquerading as a health insurance plan (see my previous post, “My Young Invincible, His Lost and Found Toe, and University Health Insurance that ‘Technically Isn’t'” 4-23-14).

Virginia and other Southern states have high ratios of physicians to the general population, yet have the worst poverty and shortest life spans of any region in the U.S. Virginia has the second highest number of free clinics in the country. North Carolina has the most and Georgia is close to Virginia’s number. Most of the free clinics are faith-based and pride themselves on not accepting any ‘government handouts.’ This generally includes the clinics not accepting Medicaid or Medicare reimbursements. These Southern states are part of the Black Belt of entrenched poverty and severe health inequities. Are free health clinics part of the solution or part of the problem?

The deeply entrenched American notion of charity care as the way to provide safety net services engenders stigma, shame, dependency, and resentment among recipients. Charity care is especially pronounced in the Bible Belt South. People do not want to have to depend on the kindness of strangers. Charity care further fragments an already fragmented, disorganized health care system. Charity care clinics have to compete for donations, grants, staff, and patients. Charity care further fragments and separates us as members of society—sorts us into the haves and the have nots, into worthy and unworthy citizens. Charity care perpetuates poverty. Despite compassionate staff and health care providers, charity care is always leftover care, afterthought care, second-rate care. Charity care gets discouraging, both to give and to receive. I know this first-hand, having been on both the giving and receiving ends of charity health care.

Medicaid and Medicare are both basic entitlements; they are not charity care. So Virginians, come down off your high horses and get Medicaid expansion.