My essay, “Listen, Carefully,” was published today by Electric Literature/Okey-Panky. I love the Okey-Panky tagline, “Literary oddments for busy people.” They state that my essay (or is it really a prose poem?) is a 4-minute read. It includes a link to my 7-minute digital storytelling video of my reading of the piece, accompanied by my photographs.
“Listen, Carefully” is part of my book and digital humanities project, Soul Stories: Voices from the Margins. In “Listen, Carefully” I parse out some of my criticisms of the practice of narrative medicine, as well as the rhetoric of listening—and of silence.
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:
The public health (and political) crisis in Flint, Michigan over their contaminated drinking water should be sending out much louder alarm signals throughout our country. Snowmagedden 2016–from a different form of water–is drowning out the dirty water, dirty politics, and dirty failures of our public health system. Note my use of ‘our’ and not ‘their,’ which would make it oh so more comforting and at arm’s length for those of us who are not living in Flint. Contaminated water supplies can happen in our own hometowns, especially with the widespread crumbling infrastructures and a diminishing focus on public health surveillance. Access to safe, clean water is a basic human need; it should be an equal opportunity necessity. But clearly it is not.
For anyone who has missed this part of our national news, the Environmental Protection Agency (EPA) three days ago issued an emergency order over unsafe public water in Flint, Michigan, and assumed federal oversight of water testing and water treatment in the city of 100, 000–a city where 57% of the population is African-American and 42% of the city’s residents live below the poverty line. This week President Obama declared a state of emergency over the Flint water crisis and has assigned an expert from the Department of Health and Human Services to assist in assessing the extent of lead ‘poisoning’ in children and then recommend interventions. As we know all too well, what with the effects of lead additives to household paint and gasoline, as well as other environmental sources, children’s exposure to lead has devastating effects on multiple organ systems, and especially on the developing nervous system. Lead exposure in infants (including en utero) and children is linked with cognitive deficits (lower IQ), learning and behavioral issues.
In 2014, city and state officials switched from using the nearby Detroit water supplies (which came from the much cleaner Lake Huron) to using the highly contaminated Flint River for Flint’s water, in order to save money. They also failed to treat the water appropriately to minimize lead leaching into the water supply from old pipes. And they failed to appropriately test the household water supplies, ignored residents’ complaints about green and brown and foul-smelling water. And the city and state officials, including public health officials, publicly denied there was a problem, even after Dr. Mona Hanna-Attisha, a local pediatrician, presented them with evidence of alarmingly elevated blood lead levels in children she was seeing. As reported today in the excellent NYT article, “When the Water Turned Brown,” by Abby Goodnough, Monica Davey, and Mitch Smith:
“Yet interviews, documents and emails show that as every major decision was made over more than a year, officials at all levels of government acted in ways that contributed to the public health emergency and allowed it to persist for months. The government continued on its harmful course even after lead levels were found to be rising…”
People have rightfully pointed out that this is clearly a case of a willful neglect of environmental justice. If Flint, Michigan was more affluent and ‘more white’ it is highly unlikely that this problem would have started in the first place, or at least it would have been more quickly and more efficiently remedied. As the EPA defines ‘environmental justice’ on its website: “Environmental Justice is the fair treatment and meaningful involvement of all people regardless of race, color, national origin, or income with respect to the development, implementation, and enforcement of environmental laws, regulations, and policies. EPA has this goal for all communities and persons across this Nation. It will be achieved when everyone enjoys the same degree of protection from environmental and health hazards and equal access to the decision-making process to have a healthy environment in which to live, learn, and work.”
In his characteristic no-holds-barred truth-telling way, filmmaker and Flint native Michael Moore is calling for the arrest of Republican Governor of Michigan, Rick Snyder, claiming he helped create the water public health crisis in Flint. (See this MSNBC interview of Michael Moore by Chris Hayes, January 19, 2016.)
As a public health nurse, this complex and entirely preventable problem in Flint, makes me angry and sad. Not only because of the environmental injustice of it all. Not only for the longterm negative health consequences for the thousands of children of Flint exposed to lead through their town’s drinking water. Not only for the devastating effects on the parents of these children. But also because of how much it undermines any and all heard-earned trust people have in our public health system. That negatively affects the health and safety of all of us.
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 World, Oxford 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.
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 thestory–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.
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.
In celebration of the 50th Anniversary of the establishment of the role of nurse practitioners, I want to share an excerpt from my forthcoming book, Catching Homelessness (She Writes Press, August 9, 2016 publication date). Young people contemplating careers in nursing often ask me if I am happy I ‘became’ a nurse practitioner back in the early 1980s. My answer is always a qualified and honest, “yes, but it has not always been an easy role to work within–mainly due to the rigid medical hierarchy.” Yet of all the health care roles in existence today, if I had the chance to do it all again, I would–without any hesitation–become a nurse practitioner. We are a tough breed, willing to work on the medical margins, and we are here to stay.
Here is the excerpt from my book, in a chapter titled “Confederate Chess”:
“Nurse practitioners are an American invention, and specifically they are an invention of the American West. The nurse practitioner role was started by a Colorado nurse in the mid-1960s during President Johnson’s War on Poverty, when Medicaid and Medicare were established to extend health care to the poor and elderly. Even before this expansion of health care, there was a shortage of primary care physicians. At the same time there were many seasoned, capable nurses who were already providing basic health care to poor and underserved populations. A nurse-physician team developed the nurse practitioner role, adding additional course work and clinical training for nurses. With this, states began allowing nurse practitioners to diagnose and treat patients, including prescribing medications for common health problems.
Not surprisingly, the emergence of the nurse practitioner role met with the most resistance in states with higher physician to population ratios, and in states with more powerful and politically conservative physician lobbying groups. The nurse practitioner role was protested both within the medical and the nursing establishments. Physicians didn’t want nurses taking jobs from them, and nurses didn’t want other nurses having a more direct treatment role—more power and prestige—than they did. But the role caught on and spread throughout the country. Nurse practitioners didn’t get firmly established in Virginia until the mid-1980s when I completed my training.
Why nursing? I often asked myself, and people continued to ask me even after I became a nurse practitioner. It was as if any sane, intelligent, modern woman could not want to be a nurse. I had stumbled into nursing while a master’s student at Harvard University, studying medical ethics and taking courses in the School of Public Health. I was gravitating toward a public health degree, but was advised by one of my professors to go to either medical or nursing school first in order to get direct health care experience. I didn’t like the approach of mainline medicine, but also had a negative stereotype of nursing. The only nurses I knew worked in my rural family doctor’s office. They were stout, dull-witted, and wore silly starched white caps, overly-tight white polyester uniforms, and white support stockings that swished as their fleshy thighs rubbed together. But in graduate school at Harvard I sprained my ankle, and went to the student health clinic. I was seen by a kind and competent provider who spent time explaining what I should do to help my ankle recover. I was impressed and thought she was the best doctor I’d ever seen. Then she told me she was a nurse practitioner and explained what that was. My negative stereotype of nurses was challenged.”
Recently, I spent a week ‘off the grid’ on a solo writing retreat at one of my favorite places on earth: Orcas Island in Washington State’s San Juan Islands. In my experience, going off grid, off e-mail, off social media, off any news is both deeply restorative and refreshingly loopy. Restorative, of course, because the electronic umbilical cord connection with the world creates a constant anxious buzz that is typically only apparent when it is absent. Refreshingly loopy because the cessation of that baseline buzz creates space for our brains to make sudden strange connections and leaps into uncharted territory.
One of these loopy leaps for me happened through the nurse log. Anyone who has ever lived in or traveled through the soggy, glacial-scoured forests of the Pacific Northwest, is familiar with the term ‘nurse log’–an example of which I include in this post. Nurse log, as in a decaying part of an older tree (log, or stump, as in this photo) that provides the ideal environment of moisture and nutrients and even shelter from competition, for a new tree to start its life. An example of resilience, adaptation, and thriving in the face of adversity. An example of the circle of life.
A metaphor for where I am in my nursing and teaching career: on sabbatical, gone fishing, taking a break, lying fallow and untilled, at least from my usual clinical and teaching responsibilities. More time to study important things, like the state of homelessness, the role of narrative in health and healing, the history of charity health care–and the lifecycle of evergreen trees. More time for travel–not to faraway lands–but to places right here at home. More time to cultivate and appreciate quiet.
It strikes me that we don’t allow enough space and time for quiet. We now recognize the importance of quiet in hospitals to allow patients to heal from illness, trauma, and surgery–although actually providing this for patients is spotty at best. I was reminded by Health Care for the Homeless, Seattle/King County Public Health nurse Heather Barr recently that emergency and transition shelters for people experiencing homelessness are often chaotic and cacophonous places. She advocates the addition of quiet rooms and quiet hours when she works with shelter staff around implementing trauma-informed care. People who are struggling with PTSD are often triggered by noise. I’ve often observed the role of a healing quiet space in public libraries for homeless and marginalized people who otherwise don’t have such sanctuaries. As health care providers, as caregivers, as teachers we should remember the gift of stillness and of quiet.