Glad to share this recent interview I had with Brian Dolan, UCSF Professor of Medical Humanities, Director of the UC Medical Humanities Consortium, and editor of the University of California Medical Humanities Press.
This past week at the University of Washington Health Sciences Common Book kick-off event, I heard a moving speech by Benjamin Danielson, MD. Dr. Danielson is Medical Director at Odessa Brown Children’s Clinic, a Seattle Children’s community-based clinic in Seattle’s Central District, an area which because of ‘redlining’/racial segregation in Seattle’s history, had been a predominantly black neighborhood. (see the excellent short video “A Really Nice Place to Live” by Shaun Scott). Odessa Brown is co-located in a building with its sister clinic, Carolyn Downs Family Medical Center, a clinic I worked at for five or six years. I had the pleasure of working with Dr. Danielson while coordinating care for a teen with sickle-cell anemia, and I know first-hand what an exquisitely competent and compassionate physician he is. But this week was the first time I’d witnessed his powerful public speaking abilities.
Our UW Health Sciences Common Book this year is Michelle Alexander’s The New Jim Crow: Mass Incarceration in the Time of Colorblindness (The New Press, 2010). This is the fourth year we have had a UW Health Sciences Common Book, with interprofessional activities based on the book’s theme interspersed throughout the academic year. Previous books have been Anne Fadiman’s The Spirit Catches You and You Fall Down (a classic if not a bit ‘overdone’ by now), Gabor Mate’s In the Realm of the Hungry Ghosts: Close Encounters with Addiction (great topic but his book is in need of heavy editing–he rambles), and last year’s book was Seth Holmes’ Fresh Fruit, Broken Bodies: Migrant Farmworkers in the United States (great topic but read like a doctoral dissertation–which it was). The New Jim Crow is written in an accessible, non-academic and powerful style, and is, of course, on a painfully current topic in the U.S. and one pertinent to health care inequities: racism.
Dr. Danielson started his talk by acknowledging the history of the Central District where he works, and the ‘strong black women,’ of the neighborhood’s past, Odessa Brown and Carolyn Downs, for whom the two community clinics are named after. Both women advocated for quality and accessible health care for their communities. Odessa Brown, who had experienced racial discrimination in accessing health care, was active in starting a children’s clinic in the Central District before she died at age 49 of leukemia. Kudos to the Odessa Brown Children’s Clinic for including information on Odessa Brown (the woman) on their front webpage, in ‘Our History,’ right under ‘Our Mission.’
Carolyn Downs was part of the Seattle Black Panther movement, who with the financial help from people like Jimi Hendrix and James Brown (both from the Central District), in 1968 opened what was then the first health clinic in the community. Less of her history is included on the webpage for the clinic, but I know from having worked there and taking care of the daughter and granddaughter of Carolyn Downs, that she died young of breast cancer–and at least partially because of disparities in access to breast cancer screening and treatment.
I provide some of the history of both Odessa Brown and Carolyn Downs because I admire the work they did during their too-short lives, and because–as Dr. Danielson said in his speech–this can become another example of “black people being deleted from history.”
What to do about the continued, pervasive, and destructive problem of racism in our society, including in our institutions ranging from prisons to hospitals and clinics? The main message from Dr. Danielson and Michelle Alexander (through her book) is that it will take both individual and collective action for us (for the U.S.) to create positive change. During his talk, Dr. Danielson spoke of using the companion community organizing guide to The New Jim Crow, titled Building a Movement to End the New Jim Crow: An Organizing Guide by Daniel Hunter (Veterans of Hope Project, 2015).
In chapter one of this guide, “Roles in Movement-Building,” Hunter references the terminology used by Bill Moyer in his book Doing Democracy: The MAP Model for Organizing Social Movements (New Society Publishers, 2001) This work divides people’s roles into four main groups: 1) Helpers–direct service providers, 2) Advocates-who work to make systems work better for those in need, 3) Organizers–who bring people together to change systems, and 4) Rebels–who speak truth to power and agitate for radical change. The key is to recognize our own strengths and roles–where we are most comfortable working– but also to see the value in the rage of roles played by different people, because an effective social change movement requires people working in all of these roles.
This is similar to the “Bridging the Gap Between Service, Activism, and Politics” group activity from the Bonner training curriculum that I have used for many years when teaching community health. But (of course!) I like the addition of the category ‘Rebels’ to the mix and plan to add that the next time I use this in teaching.
On a very sobering (as if we weren’t already very sober) note, Dr. Danielson ended his talk Tuesday night by adding that for all the good work and innovative community outreach programs of the Odessa Brown Clinic, he often asks himself if they aren’t keeping children healthy enough that they too can end up in our country’s prison system.
Rural health care is an important and oftentimes overlooked topic in discussions of health policy. It is also a sorely neglected topic within the education of health professions students. Since all the major academic medical centers in the U.S. are by necessity located in larger urban areas, the course content and clinical rotations for health science students focus on the urban or suburban health care contexts. Also, as a colleague of mine pointed out recently, any health researcher/academic wanting to focus on rural health would be committing career suicide. That reminded me of what an academic advisor told me early in my career–that focusing on the health of people experiencing homelessness was a dead-end career move. News alert: no one in positions of power and privilege (including NIH grant reviewers) really care about health issues of marginalized people. Perhaps my advisor was right, but I’m glad I didn’t listen to her.
Ignore your roots at your own peril! I grew up in rural Virginia, in a house on a dirt road that was connected to a dirt ‘rural route’ road with no name. In a house with no curtains on the windows since the nearest neighbor lived several miles away. In a house surrounded by woods and corn fields. I got my occasional health care from a country doctor in his country clinic with its 1940s-era medical equipment. Not unlike many young people who grow up in more isolated rural areas, I could not wait for the day I could ‘legally’ move to a city and never look back at what I saw as the stiflingly -limited scope of rural living. Backwards and bucolic. ‘Watching the corn grow,’ as my city friends used to tease me. Rural areas anywhere in the world are, to me, both of these because they are typically socially and politically conservative, as well as being in lovely and peaceful settings.
Imagine my surprise yesterday when I accompanied an interprofessional health sciences rural health course student field trip to the rural hinterlands of Eastern Washington. I try to challenge myself to go outside my comfort zone on occasion, and yesterday was one of those times. In the twenty or so years I have lived and worked in Seattle, I have only ventured east of the Cascades (within my state) once before, and that was just barely over ‘the Pass’ in Ellensburg for a public health Medical Spanish intensive course. Yesterday we visited several community health clinics, a public health clinic, and a community ‘critical access’ hospital in the tiny crossroads towns of Mattawa (supposedly an Indian word for “where is it?” population: 4,437 ) and Othello (population: 7,364). These were both dusty, semi-arid, almost desert places where I expected tumbleweeds to blow through town along with Wild-West shootouts.
But here, in the middle of this dusty, no-stoplight, tiny town of Mattawa, was this gorgeous state-of-the-art, wrap-around, one-stop shopping, culturally-relevant clinic, Wahluke Family Clinic, part of the Columbia Basin Health Association. The Association’s motto is “Keeping healthy those who feed the world.” The outside/front entrance of the Wahluke Family Clinic:
A tour of the clinic, which has an amazing array of primary health care services including family medicine (physicians, physician assistants, nurse practitioners, RNs), dental/orthodontics, vision care, behavioral health (mental health and chemical dependency services), diabetic footcare/shoes, pharmacy services (including delivery and a drive-through pharmacy), all under one gorgeous roof, with clean, lovely-decorated facilities throughout, a rooftop, sunny staff lunch/break-room and outdoor patio, a fully-equipped indoor gym for all staff members, and original artwork throughout. It all felt unreal, like, really? is this how primary healthcare can be? and wait! this is part of our safety-net health care system, since they are a community health clinic with federal funding, and serving primarily a Spanish-speaking migrant farm worker and lower-income rural population. Plus, it is out in the middle of nowhere.
Besides the dizzying array of health care services, what most impressed me about this clinic (and its linked clinics in nearby Othello), was the attention to the aesthetics of the patient areas, with use of original artwork, seemingly by Hispanic/Latino artists–such as the one in the first photo included in this post.
In stark contrast, were these patient care hallways (mental health services at the Adams County/Othello Public Health Department–why does public health have to be so perpetually, well, frumpy and unappealing?):
Although I realize I do not know enough about the health care in these small towns/rural areas, I wonder if the quality/cultural appropriateness of a clinic or hospital’s artwork is a good indicator of the facility’s overall healthcare quality. Perhaps in addition to Dr. Paul Farmer’s two indicators of healthcare quality–gardens and bathrooms–could be added artwork/general aesthetics.
I’m not planning to move back to a rural area anytime soon, but after yesterday’s field trip with health science students, I have a greater appreciation of what well-run community-based primary care services in rural areas can look like.
Ugly, as in ‘unpleasantly suggestive, causing disquiet, likely to involve violence of some sort, repulsive.’ Underbelly, as in ‘beneath the surface, hidden, vulnerable, corrupt, sordid.’ Health humanities, as in the relatively new transdisciplinary field linking the arts and humanities with health and healthcare. Health humanities is both the term and the international movement intended to widen the more traditional field of medical humanities with its focus on physician practice and physician education. (See The International Health Humanities Network for more information.)
I have just returned to my life in Seattle after four days in Denver spent pondering the ugly underbelly of the health humanities. I was a participant-observer at the 4th Annual International Health Humanities conference, Health Humanities: The Next Decade, held at the University of Colorado School of Medicine Center for Bioethics and Humanities. The stated purpose of the conference was to “…bring together scholars, educators, clinicians, health advocates, students, patients and caregivers in an effort to identify the core issues and guiding values as well as define the expanding scope of the health humanities.”
Out of 100 or so conference participants, I believe I was one of only three nurses. Professor David Flood from the College of Nursing and Health Professions at Drexel University served as a conference committee member, but there were no nurses (unless they were deeply closeted nurses) who presented at the conference. The third nurse was Jamie Shirley, PhD, a terrific nurse ethicist and lecturer at the University of Washington Bothell campus. At the risk of adding to the tiresome ‘whiny nurse syndrome/trope in academese,’ I can’t help asking, “Where were the nurses?” As this was hands-down the best, most thought-provoking conference I’ve ever been to–and was, correctly I think, proclaimed as a historic conference with far-reaching consequences–why weren’t there more nurses at ‘this table?’
What I most loved about the conference was that the planners, speakers, and participants all openly acknowledged and explored the ugly underbelly of the health humanities. Not just who/what groups of people are included and excluded within the theory and practice (and international conference) of the health humanities, but other and perhaps more uncomfortable questions, such as:
By attempting to train medical, nursing, and other healthcare professions students in ‘narrative competence,’ are we turning this into yet another skill to include on a checklist? (The ‘tyranny of competencies’ as it has been called.) And, as Katie Watson, JD of Northwestern University Feinberg School of Medicine pointed out in a session on narrative advocacy, is a focus on narrative competence ignoring the fact that perhaps this is intrusive, itself a form of violation–of violence? Do we as teachers of the health humanities understand what it costs our students (as well as ourselves) to be opened up/made more vulnerable to the emotional pain of patients, of families, of communities, and of the world? Do we do enough to help our students ‘learn how to carry’ (or perhaps how to carry and then let go of) traumatic patient/community stories? Where does the ‘enterprise of narrative medicine’ fit within the health humanities? What are the professional consequences of doing radical art, radical writing, radical practice, and I’d add, radical teaching? By attempting to widen medical humanities to health humanities, are we adding to the cult of healthism?
And an ‘ugly underbelly’ question that I asked in a session yesterday (when I stepped outside of my observer role): why is religion/spirituality seemingly a taboo topic within the health humanities? Throughout the conference people tip-toed around religion and spirituality. Don’t people see that the privileging of secular humanism, the marginalizing–or worse, belittling–the role of religion and spirituality within our world, within healthcare practices, within health policy, within our own lives, is a grave danger? I’m not referring to a grave danger to our ‘souls,’ whatever that may mean, but rather to our lives together in communities, to the common good, to the civil discourse necessary for democracy.
Art heals, or at least it can, given the ‘right’ art and the right circumstances.
Art is therapeutic. Art therapy, as defined by the American Art Therapy Association is: “…a mental health profession in which clients, facilitated by the art therapist, uses art media, the creative process, and the resulting artwork to explore their feelings, reconcile emotional conflicts, foster self-awareness, manage behavior and addictions, improve reality orientation, reduce anxiety, and increase self-esteem.”
An increasing number of U.S. hospitals have arts programs, which include art therapy, musical performances, and installations of visual art. The nonprofit Center for Health Design has an excellent free resource Guide to Evidence-based Art. I, of course, particularly love this statement in the Guide: “Perhaps the most prominent pre-cursor to the art initiative in hospitals today is Florence Nightingale’s Notes for Nursing (, 1969) describing the patients’ need for beauty and making the argument that the effect of beauty is not only on the mind, but on the body as well.”
The healing power of art has even made it into the stalwart and conservative Wall Street Journal (see Laura Landro’s article from August 8, 2014 here). Research studies indicate that exposure to art related to nature or representational art with a positive, uplifting message helps calm anxious patients, speeds healing, and reduces the need for pain medication. I assume by ‘nature’ they mean the calm, peaceful side to nature and not the chaotic, destructive, lion eating the lamb side of nature–which is, after all, just as natural.
Lately, I’ve been visiting Seattle-area hospitals to take in their public art and to write Ekphrasitic poetry with my poet-psychotherapist friend and narrative medicine colleague, Suzanne Edison. Suzanne is the mother of a child with a rare autoimmune disease and she teaches writing workshops with patients, families, and healthcare professionals. Here is one of my favorite pieces of art that Suzanne and I stumbled upon, located at Harborview Medical Center in the Radiology Department waiting room.
The two times in my life when I was hospitalized–when I was thirty, for abdominal surgery for a benign tumor and then when I was forty and was partially paralyzed from lateral myelitis/inflammation of the spine–I remember that there was absolutely no artwork on the walls of my rooms. The rooms were stark and sterile and dark and did nothing to contribute to my healing.
In contrast, I do vividly remember the artwork that surrounded my bed and couch when I convalesced at home after my second hospitalization. These three prints of my mother’s (Ruth Singley Ensign) are the ones that kept me company and that became part of my liminal dream-wake life in the days and weeks it took me to return to full functioning. Only the middle one, “Mountain Quiet,” could be considered a suitable ‘healing piece of art’ according to the Guide to Evidence-based Art. The other two, and especially “Ladder to a Room Apart” (my favorite piece of my mother’s prolific body of artwork) probably would be deemed too abstract and disturbing to be included in any institutionalized healing arts program. Perhaps hospitals could start a ‘lending art’ sort of program for patients and patients’ families to be able to choose their own healing art to display on their walls.
As I finish grading student papers for an undergraduate community health course, I am reminded of the two most influential courses in all of my undergraduate and graduate education: 1) Comparative World Religions taught by Clyde Holbrook, Oberlin College in 1980; and, 2) Water and Sanitation taught by Clive Shiff at Johns Hopkins School of Public Health in 1992 (in which we applied a problem-based learning/case study approach to a Zimbabwe village water and sanitation project in a team-based approach with health care providers from mostly resource-poor countries). These two courses on seemingly disparate topics were the most personally transformative for me in terms of expanding my worldview and enhancing my critical thinking skills. Those, in turn, are two of the most important educational outcomes or standards that I aim to teach to in my work educating future nurses and other health care professionals.
As a society, as a world, what do we most want and need in health care providers? Yes, of course, we want and need intelligent, highly competent providers who are up-to-date on all of the latest scientific, evidence-based practice guidelines. But robots can do that. What we really want and need are flesh-and-blood, compassionate, grounded, and questioning humans who understand at a visceral level what it means to face existential questions of life and death; what it means to face complex personal and community-level ethical issues; and what it means to wrestle with the visceral, practical questions such as how to best to take care of basic bodily functions (like pooping and peeing) and how a community can obtain safe, clean drinking water (and the complex political, cultural, social, and historical issues related to that access).
In order to have more health care providers capable of such things, in order to ‘humanize health care,’ we need to have better support of the humanities within basic primary education, undergraduate education, graduate education, and continuing education…. Ah yes, and we need to have more health care (especially nursing) educators who have meaningful exposure to, education in, and orientation towards the humanities. By humanities I mean “the study of how people process and document the human experience” (source: Stanford Humanities), which typically includes the academic disciplines of: philosophy, literature, religion, art, music, history, and language/linguistics. Humanities and a ‘liberal arts’ education are foundational to our country and to democracy; they are also currently being undermined by a focus on ‘practical’ jobs-based education in STEM (non-humanities) subjects: Science, Technology, Engineering, and Math. As an important counterpoint to that trend, I encourage you to view the brief (7 minute) video “The Heart of the Matter” by the American Academy of Arts and Sciences (to accompany their 2013 report of the same name).
Remember to ask the important questions: who are we? where did we come from? why are we here? where are we possibly going? and where is a safe place to poop?
- Heart Murmurs: What Patients Teach Their Doctors (UC Medical Humanities Press, 2014). This new collection of personal narratives by physicians, edited by my colleague Sharon Dobie, MD, a family medicine doctor who teaches and practices relationship centered care. In these essays Dr. Dobie and thirty-five other physicians explore lessons they’ve learned from patients.
- Those whacky and wonderful Brits have a much better health care system than we do, and they have this wonderful new (creative) collection (is it a book? is it a collage?) on medical humanities. Published by the Wellcome Collection, Where Does It Hurt? The New World of the Medical Humanities is both entertaining and thought-provoking. (While you’re at it, spend some time browsing their website for fun quizzes, interactive educational games, videos, and more). Here’s what they say abut the book:
“What does it mean to be well? Or ill? And who, apart from you, really knows which is which? Contemporary definitions of medicine and clinical practice occupy just one small corner of a vast field of beliefs, superstitions, cultures and practices across which human beings have always roamed in the search to keep themselves, and others, feeling well.The label ‘medical humanities’ is the best effort we’ve made so far to define the fence that encloses that very large field; recognising that it’s a space in which artists, poets, historians, film-makers, comedians and cartoonists – in fact every one of us – has as much right to explore as any humanities-schooled or clinically trained professional. This book is a walk through that field, a celebration of its rich diversity, a dip into some of the conversations that are going on within it, an attempt to get it in perspective – and an invitation to you to join the conversation yourself.”
- The always friendly folks in the middle of cornfields in Iowa (University of Iowa) put on a terrific annual narrative medicine conference: The Examined Life Conference. They just announced that a keynote speaker for their upcoming conference (April 16-18, 2015) is poet Jimmy Santiago Baca. His memoir A Place To Stand (Grove Press, 2002) was made into a documentary released last month.
Here are some specific resources for where to get published. This is primarily intended for writers of personal essays, short stories and poems dealing with health and health care-related issues. I’ve geared the list towards nurses, but all of the journals included here accept writing from any type of health care provider, as well as from patients and family members.
Remember to do your homework before submitting to any of these journals or blogs: follow their current submission guidelines and read their published content to make sure it is a good fit for your work.
Good general all-around resources for writing and publishing:
- Poets and Writers. Under the tab “Tools for Writers” they have a searchable database of literary journals and magazines.
- Duotrope. They have recently added a nonfiction category to their excellent searchable database of literary journals and magazines, as well as information on small presses open to book manuscript submissions.
Good resource for almost all things related to medical humanities (intersection of medicine/healthcare and creative work):
- NYU School of Medicine’s medical humanities website. Has searchable database linking to published works of literature, art and movies (including within nursing, although it is in serious need of updating), an e-mail listserv, and a blog.
- American Journal of Nursing. I’ve linked to their editorial manager page that has information for potential authors. Check out their Art of Nursing, Viewpoint, and Reflections sections as these are the ones accepting more creative types of writing. (They also pay a $150 honorarium for each published piece!).
- Ars Medica/ Mount Sinai Hospital, Toronto Canada. Print/quarterly. A really nicely done publication.
- Bellevue Literary Review/NYC Langone Medical Center. Excellent print publication. Highly selective and they can take up to six months to review a submission, so I don’t recommend them for first-time authors. But I highly recommend the journal for reading good narrative medicine type writing. They also have really cool archived historical photos from Bellevue Hospital, the oldest continuously running hospital in the U.S. (although Hurricane Sandy seriously affected their buildings and operation).
- Creative Nonfiction. This print journal is highly selective, only includes creative/narrative nonfiction, and is not primarily geared towards health-related writing. But the editor, Lee Gutkind, has his heart in medical narratives.
- Hektoen International: Journal of Medical Humanities (online only)
- Narrative Matters/Health Affairs Health Affairs is a very prestigious academic journal on health policy. Narrative Matters is their journal section on personal health policy narratives. Their editors are interested in receiving more submissions from nurses. Current issue includes a great essay “A nurse learns firsthand that you may fend for yourself after a hospital stay” by Beth Ann Swan, dean and professor at Jefferson School of Nursing, Thomas Jefferson University in Philadelphia. But you don’t have to be a dean and professor to have your essay accepted for publication. I have at least one former nursing student who is about to have her Narrative Matters essay published in this journal.
- Pulse: Voices from the Heart of Medicine. “An online magazine that uses stories and poems from patients and health care professionals to talk honestly about giving and receiving medical care.” You can sign up to get a weekly short essay (800 word limit) or poem (they currently are closed to poetry submissions as they have too many to review).
- The Examined Life Journal/University of Iowa Carver College of Medicine. A relatively new (now biannual) print journal from the medical school linked with the most prestigious writing school in the country. This is where Abraham Verghese honed his writing skills. They have a new annual writing contest/deadline is January 10, 2013.
- The Intima: A Journal of Narrative Medicine/Columbia University Program in Narrative Medicine (online only). A very new but beautifully done online narrative medicine journal.
Blogs can be a good place to get started as a writer. Consider submitting to an existing group blog to have your work included as a guest blogger. An excellent one is HealthCetera at the Center for Health Media and Policy at Hunter College. Joy Jacobson, MFA (health care journalist and poet) and James Stubenrauch, MFA (writer and editor) are both Senior Fellows at the Center for Health Media and Policy, Hunter College School of Nursing. They both have worked as editors for the American Journal of Nursing. I ‘spoke’ with them via e-mail this past week and they wanted me to encourage my students (and other nurses) to consider submitting a guest blog post.
So no excuses! Get your words out and get them published.