Ice Bucket Challenge for Ebola

imagesThe U.S.-based ALS (Lou Gehrig’s Disease) Association has struck gold with it’s social media fundraising campaign, the ice bucket challenge. Even my neighbor across Lake Washington, the gazillionaire and global health guru Bill Gates has doused himself with ice water and presumably has donated money towards ALS research. As of today, the ALS Foundation has raised 88.5 million dollars, and according to news reports, they are trying to figure out what to do with all the money.

ALS is a terrible disease with a terrible burden on not only the ALS patient, but also on his or her family due to the years of increasing and intensive home care usually associated with the disease. I had a childhood friend who developed ALS, and my elderly father spent many hours doing direct care so that the patient’s wife could get some rest. I suppose ALS has been lumped in with ‘orphan diseases,’ diseases and disorders that are relatively rare, unknown, unsexy, and unprofitable for the large multinational drug industry. So it is a good thing the ALS Foundation now has more funding for research. By contrast, cancer and Alzheimer’s Disease are both big, scary, well-known diseases that get most of our research funding. That’s because they are both highly profitable diseases for drug companies and for the health care system.

But why not do an ice bucket challenge to raise money and awareness for devastating diseases like Ebola?

An ice bucket challenge to raise funds for Ebola research, education, and health care, would likely fail because Ebola, like the disease burden from most other infectious diseases, is largely isolated to the poorest and most remote villages of Africa. “It’s over there where the poor, illiterate, ignorant Africans live, so who cares?” (I’m quoting an imaginary Archie Bunker, but it is a very real and highly prevalent belief in our country). It seems that there have only been two confirmed cases of Ebola in the U.S. so far. They were both white American, Christian missionaries working in Africa who were flown back to the U.S. on private jets and given state-of-the-art (expensive) inpatient health care–including experimental medications– at the CDC-associated hospital in Atlanta. Of course, they both recovered and have now returned to their homes.

Meanwhile, nurses and doctors and burial workers in Liberia, Sierra Leone, Guinea, and Nigeria struggle to take care of an increasing number of Ebola patients. The NYT this week published an article and accompanying video highlighting the work of amazing nurses in Sierra Leone–nurses like Josephine Finda Sellu–who are taking care of Ebola patients because: “You have no options. You have to go and save others (…) You are seeing your colleagues dying, and you still go and work.” (“Those who serve Ebola victims soldier on” by Adam Nossiter and Ben Solomon, 8-23-14).

For some important (and largely overlooked) perspective, consider the findings of this recent study on the global health disparity in disease burden and in disease research. In their April 2014 PLOS (open-access, peer-reviewed scientific journal) article “Attention to Local Health Burden and the Global Disparity of Health Research,” researchers Evan, Shim, and Loanidis found that “the production of health research in the world correlates with the market for treatment and not the burden of disease.” Measuring disability-adjusted life years (DALYS–a now standard health measure for the number of years lost due to ill health, disability, or premature death), they report a global disease burden from infectious/parasitic diseases (such as HIV, TB, diarrheal diseases, malaria–and Ebloa) of 269 million years worth of DALYs. This is in stark contrast to the global disease burden of all malignant neoplasms (cancers) of 69 million years of DALYs. Then they show that the overwhelming majority of the world’s medical research dollars goes to cancer and to neurological diseases (mainly Alzheimer’s Disease, but ALS also falls into this category). They conclude that “the inequality of research limits current quality of care in less developed countries.”

Please remember that and also the heroic work of nurses like Josephine Finda Sellu, whenever you hear anyone mutter any sentiment close to “It’s over there where the poor, illiterate, ignorant Africans live, so who cares?”

I propose an ice bucket challenge for Ebola. Instead of wasting clean water and ice (luxury items, of course, in villages like those in Sierra Leone), consider donating money to support the work of organizations like Doctors Without Borders or Partners in Health. Practice what physician Paul Farmer calls pragmatic solidarity. Pass it on…

‘The dirty nurse, Experience…’

frontier nurse‘in her kind/ Hath fouled me–an I wallowed, then I washed–‘ thus says Sir Dagonet, King Arthur’s court jester,  in Alfred Lord Tennyson’s poem “The Last Tournament.”

‘The dirty nurse, Experience’ may be a familiar, overused, and ill-used phrase. Dirty, as in sullied and morally corrupt, or as in human and grounded to the reality of life, of what it means to be human? Nurse, as in nurturing, care giving, guiding through some sort of illness, tribulation, difficult transformation or period of growth? What did Tennyson mean by this line of poetry?

Tennyson was Queen Victoria’s Poet Laureate. In his poem “The Last Tournament,” he used the story of the demise of King Arthur’s high-ideals Round Table court due to the seeping in of un-virtuous, un-chivalrous morals (and surprise! this downfall was really caused by a woman—by the unfaithfulness of his wife Guinevere). Tennyson used this story to provide a lesson for what he viewed as the increase in un-Victorian morals heralding the downfall of the British Empire. In this poem, Tennyson also may have been referring to his own life, which by middle age when he wrote this, had been marked by a large Greek island-full of personal tragedies.

But never mind the poetic history lesson. ‘The dirty nurse, Experience’ has long fascinated me because the words ‘dirty’ and ‘nurse’ and ‘experience’ seem so unexpected when used together like this.

Since I’ve spent years mulling over this phrase, I decided to do the smart thing: I gazed into the digitized crystal ball—or Merlin’s truth mirror—of Professor Google. I typed in the phrase ‘the dirty nurse, experience’ to see what was associated with it. What was conjured up by this search? Besides the poem itself, the direct quotes, the mis-quotes, the mis-uses, there were the ‘dirty naughty sexy nurse’ renditions, but I’ll leave those to your (naughty and oh so un-Victorian) imaginations. Here is a Google search first-page result that did catch my eye. It’s a question posted by xobeeautiful on January 2, 2009 on the Allnurses.com social networking site for nurses and students, and, as I gather from this post, potential nurses—or at least from people posing as potential nurses:

“Is Nursing Really a Dirty Job?

i am interested in being a registered nurse but i’m scared that i won’t like it. Is it stressful? is it a dirty job? i dont like dirty things and that’s kind of keeping me away, i really do not want to be cleaning up after people. Do all nurses clean up? Would you do nursing all over again?”

This posting fascinates me. It represents a different take on ‘the dirty nurse,’ but it also raises questions that really go to the heart of the profession of nursing: Is it stressful? Is it a dirty job?

Yes to both questions. Nursing is a down and dirty and demanding job—or calling for the spiritually minded. It always has been, and—I hope—it always will be. Because it implies direct care of people—of humans—care which is always dirty. It implies direct care of some sort; whether of helping ill or injured people take care of basic bodily functions, use the bedpan or the urinal or take a bath or—wondrously—to give birth to a baby; or doing wound care and dressing changes; or doing home and community nursing, going out on the streets, in alleyways, under bridges, going into sometimes decrepit housing, dealing with the health effects of poverty and injustice; or dealing with infectious diseases like tuberculosis, HIV, or Ebola… The list goes on. Nursing is a practice-based profession and it would improve many things if all nurses—including administrative nurses, research nurses, leadership nurses, and even (or perhaps especially) nurses who teach—would be required to keep their hands dirty by continuing to do some sort of direct patient or community care.

“Do all nurses clean up?” Now, that’s an interesting question. Nurses deal with (and make) messes of all sorts—including in direct care, administrative, research, leadership, teaching—but this question could also be interpreted as “Once they are dirty, do all nurses clean themselves up?” Not just a basic infection control, personal hygiene issue, but also related to self-care and prevention of professional burn out—which, as we know, is something nurses are particularly prone to. As Graham Greene wrote in his novel A Burnt-Out Case, a bad nurse fails to take the necessary precautions to protect him or herself, becomes a burnt-out case ‘…and ends by joining the patients.’

Learn your own early warning symptoms of impending burnout. Learn and practice your own version of healthy self-care. Listen to those closest to you when they voice concerns about your health and sanity being adversely affected by your nursing work. Support your nursing and other healthcare colleagues in taking care of themselves, and that includes advocating for sane and safe working conditions. Do all nurses clean up? Yes. Or at least they should.

Finally, the question, “Would you do nursing all over again?” Hopefully, right now as you finish nursing school, your answer is still ‘yes.’ Although, to be honest, I wasn’t totally sure when I first finished nursing school. I’ve continued to ask myself this question—or to have it asked of me by different people (including by some of you)—over the many years I’ve been a nurse. Sometimes my answer has been a mewing runt kitten ‘yes’ and sometimes a roaring macho lion ‘YEEESSS!,’ but yes, if I could rewind the story of my life, I would do nursing all over again.

What do I love most about nursing? Of course, there are the usual favorable aspects of nursing, such as: it’s flexible and adaptable, there are so many different and exciting things you can do with it, so many places in the world it can take you, and there’s the oft-quoted statement that nursing is still ranked number one as our country’s most respected profession. But those, to me, are just background pleasant aspects of nursing. What I love most is this: Nursing gives us the privilege to peer beyond Virginia Woolf’s cotton wool of everyday life, to see “…that the whole world is a work of art.” Nursing takes us into the messy swampland of human suffering, of illness and death. It takes us into the messy swampland of living.

I also love the (dirty nurse, experience) of being able to teach amazingly bright and talented and impassioned nursing students like all of you, of knowing that you will go on to change the world for the better—to change nursing and health care for the better—or at least your little corner of it.

Welcome to the down and dirty, demanding—and delightful—profession of nursing.

** I wrote this as part of an invited (by the students) speech at the graduation celebration tomorrow for our University of Washington Accelerated BSN class of 2014. They are an impressive group of new nursing graduates who already have a ton of life experience, and as I told them, are about to get more experience than perhaps they bargained for. Congratulations!

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.

 

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.