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.

Why We Need the Homeless

IMG_1955 - Version 2As Phillip Lopate points out, perverse humor and contrariness can help us break through our ingrained ways of thinking, and can help us view emotionally charged problems in our world through a more constructive lens. With that in mind, here’s why we need homelessness, why we shouldn’t be trying to end or reduce homelessness at all, but rather encouraging it. I was influenced by Lopate’s delicious personal essay “Against Joie de Vivre” (Ploughshares, Spring 1986), Herbert Gans’ article “The Positive Functions of Poverty” in The American Journal of Sociology (vol. 78/no. 2, September 1972), and by Joel John Robert’s article “10 Things We Can Do To Perpetuate Homelessness” published in the Los Angeles Times (Saturday July 19, 2003).

* The photo included in this post is from an untitled 1942 etching by my artist mother Ruth Singley Ensign.

_______________________

Homelessness is good for the individual because it provides an education in life not available by other means. If you are young and homeless and have a sense of adventure, you can travel around the country in a Jack Kerouac sort of way, get to see more cities and small towns and different ways of living than you’d ever be able to do if you were not homeless and were working full-time to try and stay not homeless. We should encourage homelessness in our young people, as it would increase their civic and geographic literacy, and help us avoid the high cost of college.

Homelessness is good for our society. First, it is good for the environment because people who are homeless often recycle things. They find discarded aluminum cans and plastic bottles in ditches and weeds beside streets and turn them in to recycling places in exchange for money. Homelessness is good for the environment because people who are homeless often leave very small carbon footprints: they usually don’t own cars or if they do, they can’t afford the gas to drive them so they rely on public transportation, or ride bicycles or skateboards (if they are young). They eat people’s leftover food that would otherwise go to waste and have to be carted off in garbage trucks and take up space in landfills. This especially applies to all of those excess Starbucks pastries that have to be done away with at the end of each day. Homeless people don’t use much electricity, especially if they live outside, and even if they stay in public or church-run shelters, the cost per person of heating or cooling the shelter area is quite cost-effective.

Homelessness is good for the economy because our U.S. market economy is based on winners and losers, the wealthy and the poor: having people who are homeless on our streets—so visibly poor—reminds us that our economy is working. It reminds us on a personal level that we had better keep working or we will end up like them: homeless. It’s a good moral lesson for our children when they are lazy at school. We can point out a homeless person and say: “See—that’s what you’ll become if you don’t study harder!” Homelessness is good for the economy because it keeps coins in circulation—especially pennies. When people give homeless people spare change, it goes to buying coffee or booze. Homelessness is good for the economy because, like migrant farm workers, many homeless people do day labor, such as construction or yard work, for very low wages. That enables businesses to turn a higher profit.

Homelessness creates jobs for people, especially jobs in public health and social work, as well as jobs for journalists and researchers who focus on homelessness. Homelessness and poverty support health care providers, teachers, social workers and other professionals who are incompetent or impaired, and who wouldn’t be tolerated in care settings for affluent persons. People who are homeless—along with other poor people—help support medical innovation, since many of them serve as patients and research subjects in academic medical centers. Of course, these medical innovations mainly benefit affluent people who can afford health insurance to cover the cost of such innovations.

Please support homelessness. Our country needs more of it.