Who Will Tell the Story?

DSC00528“My hometown of Richmond, Virginia is a city anchored to its past by bronze and marble Confederate shrines of memory, by an undying devotion to the cult of the Lost Cause. I was born and raised in the furrowed, relic-strewn Civil War battle fields on the city’s tattered eastern edge. A captive of its public schools, I was taught official Virginia history from textbooks approved by the First Families of Virginia. But I came to understand the shadowed history of my state by caring for its outcasts.

These lessons began while I was in nursing school. The modern hospital of the Medical College of Virginia curled around the former White House of the Confederacy like a lover. My clinical rotations were nearby in the crumbling brick former colored-only hospital, which then housed indigent and homeless patients, as well as prisoners. Most of these patients were black, so I called it the almost-colored-only hospital. The prisoners, shackled to their beds and accompanied by brown-clad guards, were from the State Penitentiary, located across town. One of my patients was a death-row inmate. When I spoon-fed him his medications, I was simultaneously afraid for my own safety and ashamed of being an accomplice to murder. I knew I was nursing him back to health only to return him to be killed by the state. I wanted to talk to him, ask about his family, about his life in and outside of prison, but the stone-faced armed guard loomed over me. I knew from experience not to discuss my ambivalent feelings with my  nursing instructor. She considered these to be inappropriate topics. I wanted to finish nursing school as fast as I could, so I kept silent.” (pp. 57-58, from my forthcoming medical memoir Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net, Berkeley: She Writes Press, August 9, 2016.)

I was reminded of this passage from my book this past week as I read the NYT article “Who Will Tell the Story of Slavery?” (Lorne Manly, June 29, 2016). Manly describes the (sadly to me, oh so familiar) political dueling going on in my hometown of Richmond over the location of the National Slavery Museum. Former Virginia governor L. Douglas Wilder (our nation’s first elected African-American governor, who was more recently also the Mayor of Richmond (2005-9), wants to establish the museum in the former First African Church (now owned by the Medical College of Virginia/Virginia Commonwealth University and located next to the main hospital I describe above). But the current powers-that-be, including the current Mayor Dwight C. Jones, want to locate such a museum at the historic site of the notorious Lumpkin’s Jail, a former slave prison, dubbed ‘The Devil’s Half-acre,’ the site of which was recently located and excavated. (see the Smithsonian Magazine article “Digging Up the Past at a Richmond Jail,” by Abigail Tucker, March 2009.)

The Richmond indie bookstore, Fountain Bookstore, where I’ll be doing a Catching Homelessness author event (Tuesday October 11, 2016 at 6:30 p.m.), is located a few blocks from the site of the former slave prison in the Shockoe Bottom area of Richmond. Perhaps I’ll include a reading of this section of my book. And not keep silent anymore…

Safe Sleep Matters

IMG_8022Good sleep supports good health, including mental health. We’ve all experienced sleep disruption and sleep deprivation at some point in our lives. Pulling ‘all-nighters’ while cramming for exams in school. Being a new parent. Being a caregiver for someone ill or injured. Being a night-shift nurse or other worker. Times of insomnia. We know from experience that not getting enough sleep can make us cranky at best and dangerous to ourselves and others at worst (as with driving-while-fatigued). So why, as a society, do we insist on making it a crime for homeless people to sleep, or even to simply rest?

This morning, while walking my dog in my Seattle neighborhood, I passed a small public park where a man dressed in ragged clothes lay sleeping in the shade of one of our lovely Pacific Northwest conifers. It is a hot day, and it gladdened my heart that when I passed him again several hours later on my way home, someone had placed bottled water near him–and he was stirring, reaching for the water. And no police officer was shooing him away. An increasing number of cities are criminalizing homelessness, including passing tough anti-loitering laws for public parks and sidewalks.

For anyone who has ever been homeless, or who takes the time to talk with and understand more of the lives of people experiencing homelessness, finding a safe place to sleep is one of the biggest difficulties. People who are homeless and are rough-sleeping are at great risk of being victims of crime, including of targeted hate crime (although homelessness is not a ‘protected’ category under federal hate crime laws). Whatever meager belongings they have are at risk of being stolen. Women are especially vulnerable to sexual assaults while they are sleeping or resting.

That is why I was heartened on my recent stay in Portland, Oregon to be able to visit the consumer-run nonprofit group Right to Dream Too. This is how they describe what they do and why they do it :”Right2DreamToo (R2DToo) was established on World Homeless Action Day, Oct. 10th, 2011. We are a nonprofit organization operating a space that provides refuge and a safe space to rest or sleep undisturbed for Portland’s unhoused community who cannot access affordable housing or shelter. We exist to awaken social and political groups to the importance of safe undisturbed sleep.”

The city corner lot where Right to Dream Too is located is a noisy one, what with being on a busy street (Burnside) and with wrecking balls whacking down buildings all around them. Yet it is an amazingly welcoming and peaceful oasis inside. A check-in desk, people doing shifts of self-policing the area for security, a small eating area next to a couch and bookshelves filled with books. Covered, airy gym-type thick mats raised on pallets where people can sleep. Neatly stacked piles of sleeping bags and pillows. (They told me that most of their budget goes towards laundry for the bedding). Tents in the back for staff members who stay there longer term. Well-maintained port-a-potties. Flower boxes. Brightly painted cast-off doors around the perimeter. Donated bicycles and clothing. A special tent filled with computers and information on job-hunting and health, social, education, and legal services. A palpable sense of peace and community. And even a small community garden!

The five-year-old program is, of course, at continual odds with the various powers that be in Portland and are soon to be moved to another site out of the downtown core–less convenient for the ‘houseless’ consumers of their services, more convenient to the downtown developers, condo and business owners. Here are some photographs I took of my visit (with their permission).

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Summer Reading Challenge 2016

IMG_7812Reading through the recent NYT article “12 New Books We’re Reading this Summer (and 6 Not So New),” with the list of summer reading by their book critics and staff, I was reminded that it is time to come up with my own summer reading challenge book list with a health humanities and social justice slant. Also, I was reminded to come up with a more diverse reading list than the one offered by the NYT. I did  similar list last summer (see previous blog post, Summer Reading Challenge with a Health Humanities/Social Justice slant ( June 2, 2015), with subsequent posts on my reading progress and reviews of the books.

My Summer 2016 Reading Challenge list of fifteen books is mainly composed of books I’ve acquired over the past few months during my cross-country travels, as well as from both the Association of Writers and Writers Programs (AWP) Conference in Los Angeles and the Health Humanities Consortium meeting in Cleveland. Four of the books on my list are truly ‘new’ books and the rest are new-to-me books. Here they are, listed from the bottom up as shown in the photo above:

Happy and thoughtful and humanistic summer reading everyone!

The Health Humanities Consortium

logo-1This relatively new group has provided a breath of fresh air in my life, as they manage to blend a not-overly-stuffy academic grounding with all the passion, creativity, and ‘meaning of life’ that the humanities has to offer. I’ve recently returned from their second annual conference and these both have easily been among the best conferences I’ve ever attended (and being an academic-type, I have been to numerous conferences). Great people doing great and important work to try and humanize health care and health professions education.

From their fresh-off-the press website:

“About: The Health Humanities Consortium is a community of scholars and institutions who work in the humanities and arts to promote, reflect on, and advocate health and health care in the world.”

Source: About

Endurance Test

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“No Resilience Here” mixed media, 2015, Josephine Ensign

What helps us—as health care providers, as caregivers, as people, as communities— endure the various traumas and sufferings we’re exposed to indirectly and that we experience ourselves?

Resilience is something that is often cited as an answer to this question. Resilience is a term that has been adapted from engineering to describe the ability of a substance, such as a metal, to return to its previous state after being stressed—the substance is able to bounce back, to return to steady state, to normal. The American Psychological Association definition of resilience is “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Resilience is sometimes referred to as ‘good survival.’

Over the past several decades there has been an explosion of research on resilience, mainly focusing on individual risk and protective factors. The main protective factors are, not surprisingly: 1) the formation of a firm, secure attachment to a parent or caretaker figure within the first few years of life; 2) prosocial behaviors and personality traits, such as empathy, a positive attitude, capacity for forgiveness, and ability to ‘play well with others’; and 3) a sense of personal agency, of being able to act, to do something positive both in the midst and the wake of trauma. The main risk factors are, not surprisingly, the opposite of the protective factors.

Most research on resilience has focused on the individual, is Western-centric, and has increasingly become biologically reductionist, narrowing in on the epigenetics of trauma and resilience, finding individuals and entire communities of people with ‘short alleles’ and DNA methylation—genetic markers of increased vulnerability to the adverse effects of trauma. That these are most often individuals and communities already marginalized by poverty and racism and other socially-constructed vulnerabilities, serves to further label and pathologize people and communities. It marks them as damaged goods. As irredeemably, permanently damaged goods. It typically ignores the mounting research evidence indicating that such epigenetic damage is largely reversible and preventable with appropriate life experiences—with access to appropriate life experiences, including effective therapeutic interventions.

Resilience-building interventions include cognitive-behavioral psychotherapy; therapies focused on building the capacity for empathy and forgiveness; narrative storytelling and other meaning-making therapies; and therapies aimed at increasing social support—social support that includes social touch—the human version of primate grooming. Good touch: a handshake, a peck on the cheek, or a hug in greeting; a hand brushing a shoulder in sympathy; sitting close to a stranger on a bus; washing the feet of people who are homeless, people who are rarely touched in a good way.

This all sounds good, but resilience irritates me. The whole saccharine notion that the human body, the human psyche, and even entire communities can be like heated metal—stressed and stretched but not broken—that they can bounce back, return to steady state, and perhaps be stronger and wiser for the experience?  Certainly, I believe that strength-based research and interventions are an important and sizeable improvement over our traditional deficit models so prevalent within health and social services. But resilience has its dark side.

Resilience tends to glorify trauma, and contributes to an addiction to pain and to suffering: What doesn’t kill you makes you stronger. Be the hero of your own life. Cancer saved my life, made me a better person. And Hemingway’s “The world breaks everyone, and afterward, some are strong at the broken places.” It glosses over the fact that trauma and resilience are not equal opportunity affairs, that some people (women, children, people with various disabilities, non-whites, and gender nonconforming people), and some communities (marginalized by homelessness, poverty, racism, and the effects of colonization) are much more likely to be exposed to traumas in the first place, and they have fewer resources to weather and recover from the traumas. It ignores the larger structural inequities, as well as the stigmatizing narratives we place on certain people, communities, and entire impoverished countries. As physician, anthropologist and global health champion Paul Farmer reminds us, “The capacity to suffer is, clearly, part of being human. But not all suffering is equal, in spite of pernicious and often self-serving identity politics that suggest otherwise.” (p 288)

Trauma never happens in isolation, even if it is a one-time trauma that occurs to one individual, trauma happens within the context of a particular family, community, cultural, social, and time period. An individual trauma ripples outwards as well as inwards. Suffering from trauma is always a social process; recovering from trauma is always a social process. If suffering is a universal yet unequal human experience, being able to tell and listen to illness and trauma narratives matters. But it doesn’t stop there. Physician, anthropologist, and expert on illness narratives Arthur Kleinman admonishes us that it is the moral and emotional cores of these experiences that matter much more, including the cores of social suffering that especially affect marginalized people.

Kleinman also encourages us to ask the question, What helps us endure? “And I mean by endure withstand, live through, put up with, and suffer. I do not mean the currently fashionable and superficially optimistic idea of ‘resilience’ as denoting a return to robust health and happiness. Those who have struggled in the darkness of their own pain or loss, or that of patients or loved ones, know that these experiences, even when left behind, leave traces that may only be remembered viscerally but shape their lives beyond.” (p 119)

Note: This is an excerpt from a work-in-progress, Soul Stories, a collection of essays on the role of narrative in health and healing.

Sources:

Paul Farmer. ‘On suffering and structural violence: a view from below.’ In: Violence in War and Peace. Edited by Nancy Scheper-Hughes and Philippe Bourgois. (New York)/ Blackwell Publishing (2004). pp 281-289.

Arthur Kleinman. “The art of medicine: how we endure.” The Lancet. January 11, 2014. Vol 383. pp 119-120.

 

Sick Nurses

V0026904 Florence Nightingale. Photograph by Millbourn.
Creative Commons. Photograph by Millbourn. Credit: Wellcome Library, London. Wellcome Images images@wellcome.ac.uk

Within the profession of nursing, we have a long and distinguished line of sick nurses who write. There was, of course, the mother of all sick nurses, Florence Nightingale, who, after the Crimean War, took to her bed with a mysterious illness that lasted for the last thirty years of her life. It was during this time that she wrote prolifically–letters and missives to the War Office, health care and social reform reports, and her now famous book Notes on Nursing.

Was her illness neurasthenia (nervous exhaustion, an actual medical diagnosis until the 1930s)? Was it a clever ploy to draw sympathy and support for her zealous cause of reforming nursing, hospitals–indeed, all of health care? Was it a clever ploy to have more protected time for writing and reflecting on the state of the world in need of her reform? Was it–as was taught to nursing students as late as the 1970s–the effects of tertiary syphilis? Was it–as current medical historian Philip A. Mackowiak postulates–a combination of bipolar disorder, PTSD from the horrors of the war, ‘Crimean fever’/brucellosis contracted from contaminated milk while in Turkey–and finally, the most likely cause of her death at age 91, Alzheimer’s Disease? (From his book, Diagnosing Giants: Solving the Medical Mysteries of Thirteen Patients Who Changed the WorldOxford UP, 2013.)

As Lytton Strachey puts it in his wonderfully intelligent short biography of Florence Nightingale in Eminent Victorians (Bloomsbury Press, 1918): “Her illness, whatever it may have been, was certainly not inconvenient. (…)  Lying on her sofa in the little upper room in South Street, she combined the intense vitality of a dominating woman of the world with the mysterious and romantic quality of a myth.”

Lady with the Lamp. Ministering angel. Pious Christian woman relieving suffering in the world. Nursing as a religious calling. These are the nursing myths we still live with. The nursing myths we as nurses–and especially as nurse writers–still perpetuate.

That’s what I kept thinking today as I read nurse and poet Cortney Davis‘ new book When the Nurse Becomes a Patient: A Story in Words and Images (The Kent State UP, 2015). Her book is part of the ‘Literature and Medicine’ series that includes the wonderful short story collection What’s Left Out by physician writer Jay Baruch. (Baruch’s book also happens to have one of my favorite book cover designs–check it out here.)

Cortney Davis is a seasoned nurse practitioner and a talented poet. I especially like her poem “What the Nurse Likes” included in the now almost classic book, Between the Heartbeats: Poetry and Prose by Nurses (edited by Davis and Judy Schaefer, U of Iowa Press, 1995). But over the past decade or so, Davis’ work has become stridently religious (Catholic) and proselytizing (anti-abortion among other matters). The fact that her latest book was published by a reputable (and secular) university press, and has just received the Book of the Year Award (for the category ‘Public Interest and Creative Works) by the American Journal of Nursing combined to make me look forward to reading the book.

When the Nurse Becomes a Patient tells the story–through pictures and words–of her experience with life-threatening complications of what was supposed to be routine day surgery in 2013. She had an extended hospital stay and then convalesce at home. Davis, a life-long writer, found that writing had ‘left her’ but that she was able to paint images of her illness experience.

The print version is a children’s picture book size and the printing quality of Davis’ twelve paintings depicting her illness is quite good. Favoring Davis’ poetry over her prose, I was disappointed to find that it was plain prose descriptions that accompanied each full-page image of the corresponding painting. Two of the prose/painting combinations, “On a Scale of One to Ten” and “My Husband Cares for Me Tenderly” are both quite powerful and effective at evoking important aspects of her individual-yet-universal illness experience. But most all of the remaining ten prose/paintings were over-the-top religious, what with Dark Nights of the Soul (parts one a two no less), last rites (with a priest figure), and and “Angel Band” with–yes–nurses as angels and the figure of a nun in full habit by the patient’s bedside. And, of course, there was the requisite redemptive suffering bit in “I Offer My Suffering.”

Davis, like everyone else, is free to have and write about their own personal religious beliefs. People who are ill are typically driven to face existential crises, which can lead them to deepen (or abandon) a personal faith. But books like this make me despair of nursing ever breaking free of its overly-pious Victorian roots. It’s something that I suspect even Florence Nightingale herself (pre-cognitive decline) would have wanted for nurses and for the profession of nursing. We are not angels and suffering is not redemptive.

Red Blanket Patients

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Very Important Patient red blanket. Photo credit: Josephine Ensign/2016

Although one of our country’s founding principles centers on equality, we know that has always been a lofty goal, and one that conflicts with our real guiding principle of rugged individualism combined with economic competition.

Money talks. Money yells. Money gets you red blanket treatment in many of our country’s hospitals. I’m sure the ‘real’ red patient blankets are much prettier than the swatch of one I knitted and embroidered for this photo, but they do exist both literally and metaphorically–and historically. Red blanket treatment’ of patients has historical roots in pre-WWII emergency medicine practice: a red blanket was placed over a patient triaged as needing rapid transfer to a place of higher-level treatment and attention. Presumably, this older type of ‘red blanket treatment’ was done based primarily on medical need and not on patient socio-economic status.

A different version of ‘red blanket’ VIP (Very Important Patient) hospital practices seems to be proliferating. ‘In the NYT Op-ed article “How Hospitals Coddle the Rich” (October 26, 2015), by Shoa Clarke, a physician currently doing his residency at Brigham and Women’s and Boston Children’s hospitals, writes of his experience during medical school (at an unnamed but readily identifiable hospital in California–as in Stanford) of being introduced to the concept of tiered care in hospitals where hospital administrators draped wealthy patients in scarlet blankets to help ensure they got better care. “This is a red blanket patient,” one of his supervising physicians reportedly said. Such red blanket patients are fast-tracked and given preferential treatment based solely on their wealth and status.

In a follow-up post related to this topic on KevinMD, a dermatology resident physician and medical school classmate of Clarke’s, Joyce Park, contends that she has never seen red blanket VIP patients getting better hospital care than other patients. In her very telling statement, “I have not seen this happen, from the level of nursing all the way up to the attending physicians” she manages to sum up the worst of hospital hierarchy-think and to come across as impossibly naive. (“The Problem with VIPs in the Hospital”, November 15, 2015.) Of course VIP patients get better hospital care, at least in terms of an increase in prompt nursing attention (and probably much lower RN to patient staff ratios), as well as more ‘discretionary’ medical and surgical interventions.

What’s ironic with this equation is that while the improved nursing care translates to improved patient outcomes, an increase in medical surgical interventions typically translates to worse patient outcomes. When nurses go on strike, hospital patient mortality increases; when doctors and surgeons go on strike, hospital patient mortality decreases or stays the same. (See the recent multi-country research study results reported in the British Medical Journal, “What are the consequences when doctors strike?” by Metcalfe, Chowdhury, and Salim. November 25, 2015/ and “Evidence on the effects of nurses’ strikes” by Sarah Wright in The National Bureau of Economic Research.)

The reason for this difference most likely lies in the fact that more medical and surgical care does not mean better health care or better objective health outcomes. As reported in a 2012 Archives of Internal Medicine article, “The Cost of Satisfaction,” (by Fenton, Jerant, Bertakis, and Frank) a study using a nationally representative sample found that higher patient satisfaction (with physicians) was associated with increased inpatient utilization and with increased health care expenditures overall and for prescription drugs. Patients with the highest degree of satisfaction had significantly greater mortality risk. The researchers postulate that patients with more clout who can cajole their physicians into giving them more medications and more discretionary medical-surgical interventions may be more satisfied with their care by physicians, but are also more likely to die from iatrogenic causes.

Perhaps–even if you can afford VIP/concierge/red blanket patient care–you should think twice about what you are really buying. And perhaps as a country we should think about where we’re headed with such an increasingly stratified healthcare system.