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.
All of our current ‘wicked problems’ such as racism, homelessness, environmental issues, human gene editing, violence against women, mass murders, and terrorism, cannot be addressed constructively by science or technology. As the late Donald Schon wrote:
“In the varied topography of professional practice, there is a high, hard ground overlooking a swamp. On the high ground, manageable problems lend themselves to solution through the use of research-based theory and technique. In the swampy lowlands, problems are messy and confusing and incapable of technical solution. The irony of this situation is that the problems of the high ground tend to be relatively unimportant to individuals or society at large, however great their technical interest may be, while in the swamp lie the problems of greatest human concern.” (Schon, D.A. “Knowing-in-action: The new scholarship requires a new epistemology,” 1995, Change, November/December, 27-34.)
In order to muck through the swampy wicked problem areas, we need–more than ever–the humanities. Before we continue down the path of denigrating the humanities (Rubio wanting more welders/less philosophers) and decimating university programs in the humanities, we need to ask ourselves if this is who we want to be–both individually and collectively. Where would we be without grounding in history, language, literature, comparative religion, philosophy, ethics, archeology, the theory/philosophy of law, and the criticism/theory of art? The excellent short (7 minute/ June 2013) video “The Heart of the Matter” by the American Academy of Arts and Sciences explores this question. “No humanities? No Soul,” George Lucas states.
Adams was, of course, ‘preaching to the choir’ in that most of the audience consisted of academic-types from the different disciplines traditionally considered the humanities. I didn’t recognize anyone else from the health sciences, and none of the audience members asking questions identified themselves as being from science or technology fields. This was disappointing, although not surprising. After all, even physically the UW’s Intellectual House is surrounded by buildings that house the humanities and is a far trek from health sciences or any of the science and technology buildings. But as Adams emphasized towards the end of his talk, there’s a great need to increase the intersection of the humanities with science/technology/medicine (health sciences more broadly). The humanities bring the important tools of reflection. Reflection on what it means to be human. Reflection of what it means to be a citizen.
What to do with difficult stories? Stories of refugees, victims of mass shootings, of hate crimes, of rape, of torture victims, of people dying alone and unnoticed ? It all gets overwhelming and depressing to hear or read these sorts of difficult stories, to carry them in our hearts, to bear witness to so much suffering in the world.
Of course, for many fortunate (perhaps unfortunate?) people, there is the option of tuning out these stories, turning off the news, unplugging from any non-vacuous form of social media. Taking a break from difficult stories.
But what about all the other people who cannot or choose not to disconnect? What about people whose work involves listening to these stories on a daily basis? Frontline health care providers who work with people experiencing trauma (physical, emotional, sexual). First responders. Counselors, mental health therapists, lawyers. Human rights activists. Researchers working on social justice issues. What can they do to, if not prevent, at least deal effectively with, vicarious or secondary trauma? And for those of us who teach/train/mentor students in these roles, how do we prepare students to be able to carry difficult stories while maintaining well-being?
In a previous blog post, “Burnout and Crazy Cat Ladies,” I explored the issue of ‘too much empathy’ and of pathological altruism, linking to some of the (then/2011) current research. After writing that post and some related essays, I began incorporating a new set of in-class reflective writing prompts for soon-to-be nurses in my community/public health course. I used these in a class session I titled “Public Health Ethics, Boundaries, and Burnout.”
The first writing prompt: ‘What draws you to work in health care? What motivates or compels you to do this work?’ And then later in the class session– after discussing professional boundaries (how fuzzy they can be), individual and systems-level risk factors for burnout, and asking them to reflect on how they know when they are getting too close to a patient, a community, or an issue–I gave them the follow-up writing prompt: ‘Referring back to what you wrote about what draws you to work in health care, what do you think are the biggest potential sources of burnout for you? And what might you be able to do about them?’
Feedback from students about this in-class reflective writing exercise and the accompanying class content on boundaries and burnout, was invariably positive. Many of them said it was the first time in their almost two years of nursing education that anyone had addressed these issues. I understand that patient care, electrolyte balances, wound care and all the rest of basic nursing education takes priority, but it makes me sad that we don’t include this, to me what is fundamental and essential, content.
“…people who really don’t care are rarely vulnerable to burnout. Psychopaths don’t burn out. There are no burned-out tyrants or dictators. Only people who do care can get to this level of numbness,” Rachel Naomi Remen, MD reminds us in her book, Kitchen Table Wisdom: Stories That Heal(Riverhead Books, 1996). Something to remember when we are feeling overwhelmed by difficult stories.
And for evidence-based individual ‘self-care’ activities taken to the community health level, New Zealand’s All Right? Campaign using the 5 Ways of Wellbeing: Connect, Be Active, Take Note (Be curious), Keep Learning, and Give.
Our hospitals are bustling, intimidating, drama-filled, miraculous, expensive, technology-driven, antiseptic, and confusing places. Anything that can make them more ‘grounded’ and healing should be a welcome thing.
The first photo here is of the walking meditation outdoor labyrinth and wheelchair accessible park/paracourse that was associated with the (now closed) Sheltering Arms Hospital in Richmond, Virginia. This is where I would go for stress-reduction and perspective-seeking when I worked as a rehab nurse at the hospital (1980s), and then much later when my father was in home hospice nearby.
Paul Farmer, physician, anthropologist, global health activist, and founder of the Harvard-based Partners in Health, says that he has two main markers of quality of health care in a hospital that he visits anywhere in the world. His are not the usual quality of health care indicators those of us who work in health care and health services research think of. For hospitals, these include such things as: 1) timely and effective health care for conditions such as heart attack, 2) lower complications (and deaths) from surgeries, 3) lower hospital-acquired infections, and 4) patient report of good communication with doctors and nurses (see the very useful and consumer-friendly online tool based on national Medicare data, Hospital Compare). No, for Dr. Paul Farmer a hospital’s restrooms and gardens are what reveal its overall quality of care.
The fascinating topic of restrooms I will leave for another time, but hospital gardens are something I want to focus on here.
Modern hospitals trace their roots to the cloistered buildings of religious monastic orders that took in those too poor or disabled to be taken care of in their own homes by family members. These early hospitals were often built around a courtyard with a medicinal/herb garden, fruit trees, and a kitchen garden.
The hospital healing garden shown here was an inner courtyard garden of the psychiatric hospital in southern France where Vincent Van Gogh was a patient. The view is from his hospital room. He also painted his famous series of blue irises from the hospital’s gardens. In letters he wrote to his family, he relayed how these gardens were an important part of his tenuous hold on mental and physical health.
Florence Nightingale knew the importance of nature in hospital reform and redesign. She emphasized the role of fresh air, sunlight, flowers, and of patients being able to see out of the window instead of looking at a wall. “She wrote, ‘I shall never forget the rapture of fever patients over a bunch of bright-coloured flowers’ she noted, adding ‘people say the effect is only on the mind. It is no such thing. The effect is on the body too'”(quote from the Wellcome Trust blog post ‘Why every hospital should have a garden,‘ 11-8-13). I wonder what Nightingale would say about our ‘modern’ hospitals banning the delivery of fresh flowers or plants to patients for fear of allergies or mold or whatever it is they fear.
Yesterday I went in search of the healing garden at the University of Washington Medical Center (UWMC) where I work (and where I have been a patient–for a bit more on that see my Medical Maze photo description in Pulse: Voices From the Heart of Medicine 1-23-15 ). I remembered it as an almost shockingly calming and contemplative space near the coffee shop adjacent to the main surgery wing. The UWMC healing garden was a rooftop garden designed by local UW landscape architect Daniel Winterbottom who specializes in healing/restorative gardens. I sought the healing garden in vain, as it was torn down several years ago to make room for yet another wing to this already massive hospital and medical center (at over 6 million square feet of mostly concrete, the UWMC/Health Sciences complex is the world’s largest single university building). The very helpful UWMC information desk staff directed me to this spot (see photo below) as the ‘backup’ healing garden. It appears to be a series of mud puddles with a no smoking sign and smokers happily puffing away. Clearly, there’s much work to be done.