Health Care Bucket Lists

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Bucket list: a list of things you want to accomplish before you die. Derived from the saying, “kick the bucket,” a euphemism for dying–although no one seems to agree on the derivation of “kick the bucket.”

I recently ran across my own bucket list that I wrote when I was twelve years old. I wrote it as part of a seventh grade creative writing assignment. My mother kept all of my childhood writing and presented the packet to me before she died–something for which I am eternally grateful. My short stories about toothbrushes coming to life give me glimpses of my younger self that cannot be accessed through any other medium. Here is my bucket list at age twelve:

  1. Own a pair of sandhill cranes
  2. Have a zoo where all the animals can run free
  3. Have a greenhouse as big as a football field
  4. Learn to ride a unicycle
  5. Go to Australia
  6. Keep an otter
  7. Build my own house over-looking a lake
  8. Write a children’s book

I believe that I wanted to be a writer, a naturalist, or a veterinarian–most definitely not a nurse. My favorite books were (not surprisingly by my bucket list), Aldo Leopold’s A Sand County Almanac and Gavin Maxwell’s Ring of Bright Water.

What would my bucket list, my hopes for the future of health care be like? Since I am no longer young and idealistic, my health care bucket list comes out sounding way too jaded and cynical. So I turned to question to my younger and hopefully still idealistic senior nursing students. “What are your hopes for health care?” was my specific in-class reflective writing question to them a week or so ago. I asked them to write out a list of their top ten hopes.

Out of the 140 or so students, the vast majority listed some version of “universal access to quality and affordable health care.” Another frequently listed item was “provision of culturally humble health care,” as well as “eliminate racism in healthcare.” Many included ‘an emphasis on community-based primary health care,” and “more funding for public health.” Improved patient safety efforts, especially through good interprofessional health care team communication and safe nurse-to-patient ratios in hospitals, was a top-listed item. Closely related to that was “improve working conditions to reduce nurse burnout.” Improved access to better mental health services (including the astutely stated question “why are mental health units so ugly?”) and reducing stigma for mental illness and substance use issues, were also frequently mentioned. “Improving end-of-life and beginning-of-life care” as a way to improve quality of life as well as better use of our health care dollars was another top choice.

Here are some additional student ‘hopes for health care’ that make my heart sing and that give me more than a bucketful of hope for the future of health care:

  • To see the person, not the illness.
  • To create a nursing image that represents our smarts and not just our compassion (and nurses aren’t asked, “why didn’t you become a doctor?”)
  • To have more nursing involvement in policy change. Use my knowledge of the challenges faced by my patients to inform policy advocacy.
  • To ensure that ‘the least among us’ receives the best care possible, and “that I am courageous and prepared enough to advocate for the least among us.”
  • That we realize our patients have backstories that need to be recognized in order to provide the best care for them.
  • Full scope-of-practice for nurses uniformly across the country.
  • I hope I still have hopes for the health care system.

I am a Nurse, Just a Nurse

11164759_1057759667571978_8700043668876075012_nFor many years, whenever anyone said to me, “Oh! You’re a nurse,” I would correct them and say, “No, I’m a nurse practitioner.” Why? As if identifying myself as a nurse was somehow beneath me? As if being a nurse practitioner meant I wasn’t really a nurse, or I was more than a nurse because I could diagnose and treat medical problems, something nurses can’t do? As if I was too intelligent to be ‘just’ a nurse?

I was not born to be a nurse; I was not called to be a nurse. I didn’t need multiple-choice tests and multiple sessions of career counseling at pivotal junctures in my life to tell me these facts. What with the Myers-Briggs Type Indicator, the Strong Interest Inventory, the Eureka Skills Inventory, and the Holland Personality test results, my career counselor proclaimed, “You don’t have the personality, the interests or skills test results to match nursing.” It seems I was meant to be a writer. Oops. Too late. When she told me this I had already been a nurse/nurse practitioner for over thirty years. Of course, it was my job as a nurse practitioner and nurse educator (and most definitely not as as an unpaid writer) that allowed me to take these expensive tests in the first place.

But oh the places nursing has taken me! If I had it all to do over again, if I didn’t have to worry about being a single mom earlier in my career trying to earn a decent income, if I could choose any of the health professions to ‘become,’ I would choose to be a nurse. I would choose to be the ambivalent, skeptical, social-justice minded, community/public health-focused nurse that I am. Last summer I reflected on where community health nursing has taken me, and I made this short digital storytelling video: “My Story of Community Health Nursing.”  Even though this was my first video, and I see that it is clunky in places, I revisit/re-watch it on occasion to remind myself of who I am, and of why I love to do the work I do–including teaching nursing students and encouraging them to consider becoming a community/public health nurse.

The photo included in this post is a ‘retouched’ photo of a University of Washington School of Nursing promotional placard reading “I am a #huskynurse.” It’s not that I’m opposed to proclaiming myself an over-sized, plump nurse. But I am opposed to being a (branded) nurse. I am an–unqualified– nurse. I am a nurse. I am a community/public health nurse.

Happy National Nurses Week and Happy 195th birthday to Florence Nightingale!

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“Just a Nurse” is used with a nod to the work of Suzanne Gordon, a journalist who writes about/is a longtime advocate for nursing.

What is Public Scholarship?

IMG_3174My irreverent answer: work done by nerdy, bookish, abstruse (yes, abstruse), people with way too much formal education who can get over themselves enough to care about the ‘real’ world, what’s going on in it, what they might have to offer it on a more practical level, and what they can learn from that big, scary ‘real world.’

Here is one of the more reverent official answers:

“Publicly engaged academic work is scholarly or creative activity integral to a faculty member’s academic area. It encompasses different forms of making knowledge ‘about, for, and with’ diverse publics and communities. Through a coherent, purposeful sequence of activities, it contributes to the public good and yields artifacts of public and intellectual value.” (From: Ellison, J., and T. K. Eatman. 2008. Scholarship in Public: Knowledge Creation and Tenure Policy in the Engaged University. Syracuse, NY: Imagining America.)

The photo above is of me looking very happy yesterday at the University of Washington Odegaard Library (first floor) in front of my public scholarship multimedia exhibition Soul Stories: Homeless Journeys Told Through Feet.
This is a collection of poetry, prose, photographs, and digital storytelling videos about my work as a nurse providing health care to people marginalized by poverty and homelessness. I understand homelessness at a visceral level, having lived through it myself as a young adult. I also readily acknowledge that just because I ‘made it out of homelessness’ doesn’t mean everyone can, nor that it is an easy thing to do, especially within our society.

The Soul Stories exhibition will be at Odegaard Library (opposite Suzzallo Library on ‘Red Square’) through March 20, 2015. Odegaard Library is open to the public during regular library hours. Many thanks to the wonderful librarians at Odegaard who opened this space for me, and thanks to 4Culture for helping to fund part of this project. I was looking happy in this photograph because this has been the most challenging, fun, and soul-satisfying scholarly project so far in my career.

Public or community-engaged scholarship has never been valued by ‘high brow’ university types, especially not at research-intensive universities. It generally doesn’t ‘count’ as a valid activity for those pursuing graduate degrees. It generally doesn’t get you tenure. But that all seems to be changing, albeit at the achingly slow speed of any change within higher education. The catalyst for this change seems to be less from sudden altruistic enlightenment on the part of the academy, and more from public pressure for universities to show tangible positive impact at the local, national, and international levels. Within medical science scholarship, you can see this outside pressure manifested in the embrace of ‘translational research.’ Research within the realm of public scholarship doesn’t need to be translated.

Within the area of health-related public scholarship, a terrific resource I have used throughout my career is the Community-Campus Partnerships for Health (CCPH).  Check out the free, no membership required resources on their website, especially CES4Health, for peer-reviewed products of community-engaged scholarship.

Virginia Relics Part One: Racism

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Virginia State Capitol, Richmond 2014/Josephine Ensign

Health and Homelessness in Richmond, Virginia in the 1980s: 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 battlefields 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 homeless outcasts.

These lessons began while I was in nursing school in the early 1980s. 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 (to myself) the Almost Colored Only Hospital. The prisoners, shackled to their beds and accompanied by brown-clad armed 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 so he could be killed by the state. I also knew this was not something I could discuss with my oh-so-white clinical nursing instructor. Racism was never addressed in nursing school.

One evening in 1985, during my final year of nursing school, I was on Belvidere Street driving home from a clinical day on the south side of Richmond. At a stoplight I found myself surrounded by a crowd of scruffy white men. Some of them thrust hand-lettered cardboard signs towards my car, and chanted, “Kill the N—er!” as I drove past the Virginia State Penitentiary. On the other side of Spring Street stood a smaller crowd of people holding lit candles and singing hymns. I had been following the local news, so I knew what the protests were about. I just didn’t know they would spill out into the street—that I would be forced to see and hear them. I also didn’t realize how racist and hate-filled they’d be. That part was politely–conveniently– left out of local news.

That evening, June 25th, 1985, Virginia electrocuted Morris Mason, a thirty-two-year-old black man from the isolated, rural Eastern Shore of Virginia. Mr. Mason admitted to killing a white woman, waived his right to a trial, and was sentenced to death by a white judge. With an IQ of sixty-six, Morris Mason had the mental functioning of an eight year old. He also had paranoid schizophrenia, diagnosed during a brief stint in the Army. He’d been unable to get treatment after he was discharged. So Virginia was executing a mentally retarded and mentally ill man who had never stood trial for murder.

Virginia holds the dubious distinction of being the state with the most executions in its history, and maintains the highest per capita rate of executions in the country. Those executed in Virginia—as elsewhere in the South—are disproportionately poor and black, and typically have been charged by white judges with murder of white people.

The Richmond Street Center was located in the armpit of town, near the impoverished and racist all-white Oregon Hill, and across the Downtown Expressway from the State Penitentiary. During my years working at the Street Center, four more men were executed next door—one every year—usually during the hottest part of summer. All of the men were killed at night by electrocution with two 2,200-watt surges of electricity. Most of the men were killed in the months leading up to local elections. Politicians used the executions as evidence of being tough on crime. The death penalty did nothing to deter crime: Richmond continued to have one of the highest murder rates in the country. Murder rates everywhere in the world are directly linked with socio-economic and racial inequities–as well as to access to handguns.

Before the executions, my patients would joke about how the lights would dim in the area around the State Pen when anyone was electrocuted. They also teased me about the chair I had in my office. It was a 1930s era white enameled iron exam chair, donated by owners of an employee’s clinic at a Richmond tobacco processing plant that had recently closed. The arms of the chair swiveled. It had a padded, adjustable metal clamp headrest. The chair had been designed for ear, nose and throat exams. I had it in my office because it was handy to use for taking vital signs and for blood draws. Patients would often sit in it, place their heads back in the metal headrest, flap the chair arms back and forth, and call it Old Sparky. It was mostly white men who joked about the executions. Sometimes the Street Center took on a carnival atmosphere in the days before an execution. I chalked that up to remnants of racism and to the collective memory of lynchings.

Virginia’s Racial Integrity Act of 1924 was an anti-miscegenation law spearheaded by Dr. Walter Plecker, a white supremacist male physician and public health professional, who was head of Virginia’s Bureau of Vital Statistics, a division of the Virginia State Board of Health. The law mandated that a racial description of every person be recorded at birth, with babies sorted into one of two categories: white or colored (black or American Indian or anything else non-white), following the one-drop rule. They added the ‘Pocahontas Exception’ since many of Virginia’s first families claimed descent from her—so Virginians could be white if they had no more than 1/16th American Indian blood. The Racial Integrity Act wasn’t overturned until 1967.

When I think about my hometown of Richmond, Virginia (and when I revisit the city as I did this week), it makes me sad—and angry—that it continues to have the worst health statistics of any place in Virginia. The population is majority African American, and it has wide income inequities, along with all the social ills that accompany it, including homelessness. While Virginia ranks in the top ten nationally for per capita income, it has one of the lowest minimum wages and one of the worst Medicaid and state children’s health insurance coverage rates in the country. The Republican-controlled General Assembly has continued to block efforts to add ACA/healthcare reform Medicaid Expansion services (see NYT article linked below). Virginia ranks towards the bottom nationally in provision of mental health care services. Virginia has a deeply rooted history of bias against mental illness, mental retardation and developmental delay. In the wake of the Virginia Tech shootings in 2007, Virginia’s politicians were pressured to work towards improving the state’s mental health system, but they have a long way to go. They also have a long way to go in acknowledging and redressing the deep wounds of institutionalized racism.

**Resources:

The Richmond Street Center: In My Backyard

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The Richmond Street Center 1986

In May of 1986 I began my first ‘real’ nursing job: I worked as a nurse practitioner at the Cross-Over Health Clinic, located in a multi-service center for homeless people called the Richmond Street Center. Located in downtown Richmond (Virginia), the Street Center housed the clinic, a shelter, soup kitchen, laundry and shower services, and many social workers. The lead agency for the Street Center was the Daily Planet (which I’ll write more about in follow-up blog posts in this series). Working at the Street Center clinic as my first nurse practitioner job was either ambitious or ill conceived, and I often thought it was both on the same day. After a few months working at the Street Center I no longer freaked out when I saw scabies or crabs, gangrene, maggots, or schizophrenia.

The Street Center was thick-walled and cavernous. It was located in the armpit of town, on the border between Monroe Ward, Gamble’s Hill, and Oregon Hill near the James River. Built on land that had been the old city dump, the building had been a gas meter repair shop for the city as well as a storage unit for abandoned bicycles. The city donated the building as a way to appease the downtown merchants who wanted to get the street people—the visible homeless—away from their struggling businesses. Kudzu vines draped over trees and telephone polls; they formed a convenient curtain to block the public’s view of the ugly, forbidding looking building.

The Street Center was located at the corner of Belvidere and Canal Streets, with the main entrance on Canal. The building was flush with the narrow sidewalk.  Belvidere Street, a busy four lane divided highway that ran north to south, was part of US Route 301 extending down to Sarasota, Florida, and up to Delaware. Across Belvidere from the Street Center was a 7-11 that sold cigarettes, cheap beer and flavored wine like Boone’s Farm and Thunderbird, all popular with the Street Center clientele. South of the Street Center were the hulking brick buildings of the Virginia Penitentiary, and just to the west was Hollywood Cemetery where a relative of mine—Jefferson Davis—and 20,000 confederate soldiers lay buried. In the block north of our building was a Hostess Twinkie factory. The sweet buttery smell of the factory mingled with the acrid smells of the Street Center: damp oil-stained concrete, souring unwashed bodies, old urine, and cigarette smoke.

When the Street Center opened in April 1986, homelessness was getting extensive national and local attention, with almost daily newspaper and TV news coverage. In May of that year, USA for Africa teamed up with Coca-Cola to sponsor Hands Across America to raise money for “fighting hunger and homelessness.” They had thousands of people hold hands for 15 minutes in cities across the nation. President Reagan joined in the hand holding from the White House, reportedly shamed into doing it by his daughter. There was a sense that homelessness—at least this new version of homelessness—could be cured.

As a group, people who were homeless were called street people; they were poverty made visible on the streets and sidewalks. Homeless people, mostly in the form of older alcoholic men, had been part of the American urban scene for a long time. They had been called vagrants, paupers, hobos, and bums. What was new was a combination of the sheer number of homeless people, along with the changing face of homelessness. There were now women, younger people, and entire families living on the streets.

Homelessness was portrayed as a national disgrace, and the urban housing market crisis and government inaction were mostly to blame. People talked about upstream measures and prevention of homelessness, but in a fuzzy idealistic way such as ending poverty and increasing housing. There was frequent mention of deinstitutionalization, the effort to get mentally ill and developmentally disabled adults out of long-term mental hospitals and back out into the community. This was a laudable idea stemming from the 1960’s Civil Rights era, but one that hadn’t worked out so well. Many of the people who had been in institutions needed permanent supervised housing and on-site help with counseling and medication. That combination was scarce to non-existent, and the services that did exist were underfunded and understaffed. Rising numbers of Vietnam vets who had untreated post-traumatic stress disorder, or who had gotten hooked on heroin or alcohol while in the army, were now homeless. Most were men in their early 30’s, at the time of their lives when they should have been settling down and raising a family, but they had been left behind.

All of us service providers at the Street Center believed in our grand cause. Homeless advocates pointed out that homelessness wasn’t as big a problem in Richmond as it was in large cities such as New York, and that if our community acted fast enough we could prevent it from getting out of control. We had a barely murmured, mostly unspoken code of talking up the numbers of the homeless we were serving, while simultaneously talking down any individual vulnerabilities of homeless people, vulnerabilities such as mental illness and substance abuse. We feared that would fuel a backlash of public sentiment against homeless people. We had a vested interest in sustaining the funding for our agencies, for the homeless people we were serving, and for our own jobs. We would say we were trying to work ourselves out of a job, but I don’t think any of us actually believed it.

In the 1980’s, during the time I worked with and became homeless, Mark Holmberg, a Richmond Times-Dispatch reporter, wrote articles with provocative titles such as “Homeless by Choice” and “Homelessness as a State of Mind.” He spent a night at a Richmond emergency shelter, interviewed homeless people and homeless advocates who he often characterized as having misdirected passion. In August 2005 when the bulldozers had finally razed the Richmond Street Center building at the corner of Canal and Belvidere Streets, Mr. Holmberg, in an article titled “Memory of Building Lingers, And So Does Homelessness,” wrote: “It was a sort of one-stop shop—driven largely by love and honest concern—that drew people with tough problems into a concentrated knot of dysfunction. (…) Good riddance, old friend.”

Mr. Holmberg echoed what many Richmond residents felt toward the Daily Planet, that it was synonymous with softhearted, wrongheaded homeless advocacy. And for the fifteen years of its existence, the Richmond Street Center was synonymous with the Daily Planet. Part of me agrees with this assessment, and I see that I was one of those softhearted, wrongheaded homeless advocates. But I’m glad I was. I still believe it’s better than becoming the hardhearted alternative. Even though I didn’t rely on homeless advocates or their services when I experienced homelessness myself, the knowledge that they were there helped me survive and move on.

The dark, hulking 1920’s era three-story brick building on Canal Street that housed the Richmond Street Center was owned by the City of Richmond. Beginning in 1985, the City leased the building to the Street Center’s lead agency, the Daily Planet, for $10 a year. In 1993 the city agreed to sell the property to the Ethyl Corporation, who offered to pay $300,000 to re-locate the Daily Planet. But no suitable site was located in time, mainly because no one in Richmond wanted the Daily Planet consumers in their neighborhood. Ethyl backed out of the agreement in 1995 and concentrated instead on purchasing the land where the Virginia State Penitentiary had stood for two hundred years. Meanwhile, an anonymous donor offered $2 million for the Daily Planet to move its services away from the downtown business core, preferably into Shockoe Valley next to the Richmond City Jail. The Daily Planet Board of Directors declined the offer. In early 2000 the Daily Planet moved four blocks north to its current Grace Street Location. Four years later the City Council sold the now abandoned and boarded up Canal Street property to the Virginia Commonwealth University for $250,000 for them to build student housing and a Starbucks store.

**Note: This is the first blog post of a ten-part series on health and homelessness in my hometown of Richmond, Virginia. The series is based on my work as a nurse providing health care to people marginalized by poverty and homelessness, as well as on research I have conducted over the past few years (e.g.: archival research, site visits, key-informant interviews, and records review). I plan to post a new entry in this series every other day.

Speak Art: Poetry Happens

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What poetry does: inspires, transforms, moves, agitates, articulates, imagines, disturbs, delights, and mystifies.

What poetry does (according to Emily Dickinson): “If I read a book (and) it makes my whole body so cold no fire can ever warm me I know that is poetry. If I feel physically as if the top of my head were taken off, I know that is poetry.”

Poetry happens. All around us. Every day. Even if we aren’t fully aware of the fact, the muses are whispering subliminal sweet everythings in our ears.

Poetry needlessly intimidates; poetry is relegated to the shelf labeled ‘inaccessible.’ At least that is the case for most adults; children seem to be born poets and we educate them out of it. Goodnight Moon, along with most other popular children’s books, are really illustrated poems.

Along with Cicero so long ago, pragmatic people proclaim that poetry and art are dead. Not true.

I love poetry and have been a mostly closeted writer of poetry. My first (and so far, my only) published poem at age nine (in my elementary school newspaper) was a haiku: “A hurt cricket limps/helplessly and hopelessly/into the forest.” At the time, I wanted to be an entomologist, or a veterinarian, or a writer. I most definitely did not want to be a nurse, but when I re-read this haiku, I see the empathy and compassion that later led me to nursing. Several years ago when my mother was dying of cancer and in home hospice, I found that I could only read poetry. Poetry has a magical quality.

I use poetry in my teaching. For nursing students, I’ve found that it helps to use a healthy dose of poems written by nurses. They resonate more closely for the students, and also make poetry less frightening to students who equate poetry with totally inaccessible, frustrating writing. For instance, I often use the powerful poem by Cortney Davis, “I Want to Work in a Hospital” “where it’s okay/to climb in bed with patients/and hold them—” to spark a discussion on empathy and the murky realms of professional boundaries and burnout. I love the moment in class when I read that opening line, hear a dampening of background noise, and look out over the sea of faces suddenly fully attentive. Poetry is magic.

I use poetry writing in my teaching, but I often sneak this in by not announcing it as poetry writing. For many years, in my health policy undergraduate course, I had students write an American Sentence of their take-home message for that class session. (See my previous blog post “Nurses and Writing the American–Healthcare–Sentence.”) An American Sentence is an ‘Americanized’ version of haiku and is a sentence consisting of 17 syllables. With a class of 150 students, this assignment did double or triple duty: it reinforced their in-class learning of concepts; it forced them to focus and hone their writing skills, and it helped me to read all of their writing before the next class session. Here are a few of my favorite student American Sentences about health policy: “US healthcare: purposeful opacity in service to the rich.” and “Sticks and stones will break our bones, but prevention is the way to stop it #nopoetryskills.” OK, so obviously the student who wrote that last one had figured out the poetry part. Good use of humor and Twitter.

In the final class session of the narrative medicine course I taught this summer, I had the students write either a haiku or an American Sentence to sum up their overall take-home message from the course. Here are some they came up with in 10 minutes of writing time: “Words, poems, artwork/Express the unspoken pain/We need to release.” “Prompted to write, to my surprise, the narrative created healing.” “So close yet so far/More questions raised than answered/ Curiosity.” “Healing is an art/in this class/that is what I get.” (This last one is technically a Lune/American Haiku, but I like it.)

I continue to search for ways to sneak more poetry into not only my teaching, but also into my writing life and into my life. The photograph here is from the Te Papa Museum, New Zealand’s amazingly wonderful national museum in Wellington. They had a ‘make a poem’ board with those little magnetized words in both Maroi and English that adults and children could play with and change around into ephemeral poetry: word art (or toi kupu, which I think literally translates to ‘speak art’–lovely!). When I was there this past February I stopped and wrote a poem mixing English and Maori words, using the Maori words by instinct since I don’t know more than a few words of Maori. Here’s what I came up with (translated into English, and I suppose this counts as my second published poem. Move over hurt cricket!) Poetry happens; let it happen to you.

River understood

travel as divide.

The land

they silence—cold

forged heat.

Pleiades mourns.

Ice Bucket Challenge for Ebola

imagesThe U.S.-based ALS (Lou Gehrig’s Disease) Association has struck gold with it’s social media fundraising campaign, the ice bucket challenge. Even my neighbor across Lake Washington, the gazillionaire and global health guru Bill Gates has doused himself with ice water and presumably has donated money towards ALS research. As of today, the ALS Foundation has raised 88.5 million dollars, and according to news reports, they are trying to figure out what to do with all the money.

ALS is a terrible disease with a terrible burden on not only the ALS patient, but also on his or her family due to the years of increasing and intensive home care usually associated with the disease. I had a childhood friend who developed ALS, and my elderly father spent many hours doing direct care so that the patient’s wife could get some rest. I suppose ALS has been lumped in with ‘orphan diseases,’ diseases and disorders that are relatively rare, unknown, unsexy, and unprofitable for the large multinational drug industry. So it is a good thing the ALS Foundation now has more funding for research. By contrast, cancer and Alzheimer’s Disease are both big, scary, well-known diseases that get most of our research funding. That’s because they are both highly profitable diseases for drug companies and for the health care system.

But why not do an ice bucket challenge to raise money and awareness for devastating diseases like Ebola?

An ice bucket challenge to raise funds for Ebola research, education, and health care, would likely fail because Ebola, like the disease burden from most other infectious diseases, is largely isolated to the poorest and most remote villages of Africa. “It’s over there where the poor, illiterate, ignorant Africans live, so who cares?” (I’m quoting an imaginary Archie Bunker, but it is a very real and highly prevalent belief in our country). It seems that there have only been two confirmed cases of Ebola in the U.S. so far. They were both white American, Christian missionaries working in Africa who were flown back to the U.S. on private jets and given state-of-the-art (expensive) inpatient health care–including experimental medications– at the CDC-associated hospital in Atlanta. Of course, they both recovered and have now returned to their homes.

Meanwhile, nurses and doctors and burial workers in Liberia, Sierra Leone, Guinea, and Nigeria struggle to take care of an increasing number of Ebola patients. The NYT this week published an article and accompanying video highlighting the work of amazing nurses in Sierra Leone–nurses like Josephine Finda Sellu–who are taking care of Ebola patients because: “You have no options. You have to go and save others (…) You are seeing your colleagues dying, and you still go and work.” (“Those who serve Ebola victims soldier on” by Adam Nossiter and Ben Solomon, 8-23-14).

For some important (and largely overlooked) perspective, consider the findings of this recent study on the global health disparity in disease burden and in disease research. In their April 2014 PLOS (open-access, peer-reviewed scientific journal) article “Attention to Local Health Burden and the Global Disparity of Health Research,” researchers Evan, Shim, and Loanidis found that “the production of health research in the world correlates with the market for treatment and not the burden of disease.” Measuring disability-adjusted life years (DALYS–a now standard health measure for the number of years lost due to ill health, disability, or premature death), they report a global disease burden from infectious/parasitic diseases (such as HIV, TB, diarrheal diseases, malaria–and Ebloa) of 269 million years worth of DALYs. This is in stark contrast to the global disease burden of all malignant neoplasms (cancers) of 69 million years of DALYs. Then they show that the overwhelming majority of the world’s medical research dollars goes to cancer and to neurological diseases (mainly Alzheimer’s Disease, but ALS also falls into this category). They conclude that “the inequality of research limits current quality of care in less developed countries.”

Please remember that and also the heroic work of nurses like Josephine Finda Sellu, whenever you hear anyone mutter any sentiment close to “It’s over there where the poor, illiterate, ignorant Africans live, so who cares?”

I propose an ice bucket challenge for Ebola. Instead of wasting clean water and ice (luxury items, of course, in villages like those in Sierra Leone), consider donating money to support the work of organizations like Doctors Without Borders or Partners in Health. Practice what physician Paul Farmer calls pragmatic solidarity. Pass it on…

‘The dirty nurse, Experience…’

frontier nurse‘in her kind/ Hath fouled me–an I wallowed, then I washed–‘ thus says Sir Dagonet, King Arthur’s court jester,  in Alfred Lord Tennyson’s poem “The Last Tournament.”

‘The dirty nurse, Experience’ may be a familiar, overused, and ill-used phrase. Dirty, as in sullied and morally corrupt, or as in human and grounded to the reality of life, of what it means to be human? Nurse, as in nurturing, care giving, guiding through some sort of illness, tribulation, difficult transformation or period of growth? What did Tennyson mean by this line of poetry?

Tennyson was Queen Victoria’s Poet Laureate. In his poem “The Last Tournament,” he used the story of the demise of King Arthur’s high-ideals Round Table court due to the seeping in of un-virtuous, un-chivalrous morals (and surprise! this downfall was really caused by a woman—by the unfaithfulness of his wife Guinevere). Tennyson used this story to provide a lesson for what he viewed as the increase in un-Victorian morals heralding the downfall of the British Empire. In this poem, Tennyson also may have been referring to his own life, which by middle age when he wrote this, had been marked by a large Greek island-full of personal tragedies.

But never mind the poetic history lesson. ‘The dirty nurse, Experience’ has long fascinated me because the words ‘dirty’ and ‘nurse’ and ‘experience’ seem so unexpected when used together like this.

Since I’ve spent years mulling over this phrase, I decided to do the smart thing: I gazed into the digitized crystal ball—or Merlin’s truth mirror—of Professor Google. I typed in the phrase ‘the dirty nurse, experience’ to see what was associated with it. What was conjured up by this search? Besides the poem itself, the direct quotes, the mis-quotes, the mis-uses, there were the ‘dirty naughty sexy nurse’ renditions, but I’ll leave those to your (naughty and oh so un-Victorian) imaginations. Here is a Google search first-page result that did catch my eye. It’s a question posted by xobeeautiful on January 2, 2009 on the Allnurses.com social networking site for nurses and students, and, as I gather from this post, potential nurses—or at least from people posing as potential nurses:

“Is Nursing Really a Dirty Job?

i am interested in being a registered nurse but i’m scared that i won’t like it. Is it stressful? is it a dirty job? i dont like dirty things and that’s kind of keeping me away, i really do not want to be cleaning up after people. Do all nurses clean up? Would you do nursing all over again?”

This posting fascinates me. It represents a different take on ‘the dirty nurse,’ but it also raises questions that really go to the heart of the profession of nursing: Is it stressful? Is it a dirty job?

Yes to both questions. Nursing is a down and dirty and demanding job—or calling for the spiritually minded. It always has been, and—I hope—it always will be. Because it implies direct care of people—of humans—care which is always dirty. It implies direct care of some sort; whether of helping ill or injured people take care of basic bodily functions, use the bedpan or the urinal or take a bath or—wondrously—to give birth to a baby; or doing wound care and dressing changes; or doing home and community nursing, going out on the streets, in alleyways, under bridges, going into sometimes decrepit housing, dealing with the health effects of poverty and injustice; or dealing with infectious diseases like tuberculosis, HIV, or Ebola… The list goes on. Nursing is a practice-based profession and it would improve many things if all nurses—including administrative nurses, research nurses, leadership nurses, and even (or perhaps especially) nurses who teach—would be required to keep their hands dirty by continuing to do some sort of direct patient or community care.

“Do all nurses clean up?” Now, that’s an interesting question. Nurses deal with (and make) messes of all sorts—including in direct care, administrative, research, leadership, teaching—but this question could also be interpreted as “Once they are dirty, do all nurses clean themselves up?” Not just a basic infection control, personal hygiene issue, but also related to self-care and prevention of professional burn out—which, as we know, is something nurses are particularly prone to. As Graham Greene wrote in his novel A Burnt-Out Case, a bad nurse fails to take the necessary precautions to protect him or herself, becomes a burnt-out case ‘…and ends by joining the patients.’

Learn your own early warning symptoms of impending burnout. Learn and practice your own version of healthy self-care. Listen to those closest to you when they voice concerns about your health and sanity being adversely affected by your nursing work. Support your nursing and other healthcare colleagues in taking care of themselves, and that includes advocating for sane and safe working conditions. Do all nurses clean up? Yes. Or at least they should.

Finally, the question, “Would you do nursing all over again?” Hopefully, right now as you finish nursing school, your answer is still ‘yes.’ Although, to be honest, I wasn’t totally sure when I first finished nursing school. I’ve continued to ask myself this question—or to have it asked of me by different people (including by some of you)—over the many years I’ve been a nurse. Sometimes my answer has been a mewing runt kitten ‘yes’ and sometimes a roaring macho lion ‘YEEESSS!,’ but yes, if I could rewind the story of my life, I would do nursing all over again.

What do I love most about nursing? Of course, there are the usual favorable aspects of nursing, such as: it’s flexible and adaptable, there are so many different and exciting things you can do with it, so many places in the world it can take you, and there’s the oft-quoted statement that nursing is still ranked number one as our country’s most respected profession. But those, to me, are just background pleasant aspects of nursing. What I love most is this: Nursing gives us the privilege to peer beyond Virginia Woolf’s cotton wool of everyday life, to see “…that the whole world is a work of art.” Nursing takes us into the messy swampland of human suffering, of illness and death. It takes us into the messy swampland of living.

I also love the (dirty nurse, experience) of being able to teach amazingly bright and talented and impassioned nursing students like all of you, of knowing that you will go on to change the world for the better—to change nursing and health care for the better—or at least your little corner of it.

Welcome to the down and dirty, demanding—and delightful—profession of nursing.

** I wrote this as part of an invited (by the students) speech at the graduation celebration tomorrow for our University of Washington Accelerated BSN class of 2014. They are an impressive group of new nursing graduates who already have a ton of life experience, and as I told them, are about to get more experience than perhaps they bargained for. Congratulations!

Where Community Health Nursing Has Taken Me

DSC01485I’m into the power and nuance of stories and storytelling and lately have been focused on digital storytelling (DST). I have some of this content in my Soul Stories project section on this website, but I also wanted to expand upon it here.

DST refers to short video segments (typically 3-5 minutes in length) personal narratives that incorporate digital images, music, and voice-over narration by the person making the video. They are typically created within a workshop-based process that includes a Story Circle to share, critique, and refine stories-in-progress. Developed in the early 1990s by media/theater artists Dana Atchley and Joe Lambert and promoted through their Center for Digital Storytelling (CDS), DST has been used for public health research, training, and policy campaigns (such as the Silence Speaks campaign); community building (such as the BBC Capture Wales program); literacy programs; and reflective practice with health science students. DST is increasingly used as an innovative community-based participatory method that is especially effective at informing program planners and policy makers about the lived experiences of marginalized people.

Here is an example of a DST video “My Story of Community Health Nursing” that I made recently using the user-friendly storyboard style video editing software program  WeVideo.  My aims in doing this short video were: 1) to try out the WeVideo software (they have a free version, but they include an advertisement at the end of those videos), and 2) to tell the story of where community health nursing has taken me over the past thirty years. I purposefully kept it fairly low-tech and no-frills, didn’t try to add layered music or sound effects or fade ins, and I made this DST video without the use of a group Story Circle setting. I made it using my MacBook Air and its built-in microphone. It took me about two full days to produce the video, but that included the storyboard work as well as learning to use the WeVideo editing tools (which are really quite easy and they include helpful instructional videos). This would be a great resource in teaching (they have an educational platform that includes the requisite student privacy/protections).

I plan to do a second version of this soon within an ‘official’ DST Story Circle setting with more professional sound equipment to try out that experience. One of the critiques of the ‘official’ DST workshop model is that the workshop facilitators typically impose the use of a traditional, linear, redemptive storytelling narrative; this can exclude people and stories which do not fit this model. Researchers and DST practitioners such as Worchester call for use of a more flexible, co-created space for DST, including how narrative parameters are established in the workshop (Worchester, Lara. “Reframing Digital Storytelling as Co-Creative.” IDS Bulletin 43.5 (2012): n. pag.).

Call the Midwife! The Hobby Lobby Won

Call_The_Midwife_2433160b“A woman’s right to control her own body is taken for granted now, and younger people can scarcely believe that abortion used to be a criminal offense, punishable by a prison sentence for the woman and the abortionist,” wrote Jennifer Worth in her article ‘A Deadly Trade’ (The Guardian, 1-5-2005).

Jennifer Worth worked as a midwife and district nurse in London’s impoverished East Side neighborhoods during the 1950s. She lived with and worked alongside the Anglican nuns/midwives from the Community of Saint John the Divine (the Midwives of Saint Raymund Nonnatus in both her memoir and BBC series Call the Midwife.) In this time before effective birth control and legal abortions, the women she cared for had multiple, closely-spaced, and often unplanned/unwanted pregnancies. Of course, women from higher socioeconomic levels had access to to safe (if not legal) abortions. From what I have read, through her work as a district nurse and midwife, Jennifer Worth became a deeply committed Christian as well as an outspoken supporter of women’s reproductive freedoms, including the right to safe, legal abortions. Showing that these do not need to be mutually exclusive.

I am currently besotted by both the BBC series Call the Midwife and the trilogy of Jenifer Worth’s memoirs (Call the Midwife, Shadows of the Workhouse, and Farewell to the East End). I plan to use some of the Season 1 episodes of Call the Midwife next week for the summer quarter narrative medicine course I am teaching, and I envision using some of the episodes in future community health nursing courses. The series depicts many of the same–or similar–community health nursing issues that are still pertinent today and within the U.S. context. Of course, the Call the Midwife series also includes some of the early developments of Britain’s National Health Service, which for us in the U.S. seem oh so progressive (or is it oh so socialist?)

How is it that women’s reproductive rights in our country seem to be going backwards–oh so retro?

I just turned 54 and am blessed with having ‘come of age’ during a time of reasonably decent access to effective birth control and safe, legal abortion services. Similar to my belief in the germ theory, I took it as a given that these same (or better: more male methods of birth control anyone?) advancements would be available to my children and all future generations. Sure, I’ve had the mass mailing dire prediction/requests for donations from Planned Parenthood, and I’ve followed the legal retrogressive shenanigans in many of the Bible Belt states, but I never thought it could really touch me all the way out here at the far edge of North America, in the true blue area of Seattle. Until this week’s news of the Supreme Court ruling in favor of the (seriously–where did they get this name?) Hobby Lobby. To paraphrase Martin Niemoller: “First they came for the poor women of Texas—and I didn’t speak out.” Shame on me.

My U.S. Senator Patty Murray sent me an e-mail saying she’s furious about the Supreme Court ruling and vows to fight it, although I’m not exactly sure how she plans to do this. But I gave her some money, perhaps so she can buy another pair of tennis shoes to march through the halls of Congress and kick some butt. You go girl! I am very happy to live in a state with so many women in key government positions. Our country would be better off with more women in key government positions.

The American Nurses Association issued a statement condemning the Hobby Lobby ruling, stating:

“The Affordable Care Act sought to provide millions of Americans access to basic health care and preventive services, including contraception, and essential component to women’s health. However, this ruling places an unfair burden on women, particularly those with lower incomes, who may not be able to access medically appropriate contraceptive care due to the additional expense.”

Julie Rovner wrote a nice, yet disturbingly Kafkaesque,  article “Did the Supreme Court Tip Its Hand on Contraceptive Cases Yet to Come?” yesterday for Kaiser Health News.

What will you do when the Hobby Lobby (or the Conservative male Supreme Court Justices) come for you–or your loved ones? Calling the midwife won’t work by then.

Addendum: The National Women’s Law Center launched the CoverHer hotline to help women who are having trouble getting access to women’s preventive health services – especially contraception – at no cost to them. The user-friendly hotline provides personalized instructions on how to navigate the health insurance process to ensure women get the coverage for preventive services they are guaranteed under the health care law and includes critical follow-up to track the results.

The Center will use the aggregated data it collects from CoverHer to identify systemic problems with implementation of the ACA’s birth control and other preventive health benefits and will use its advocacy and outreach efforts to overcome these obstacles. CoverHer builds off of the Center’s former Pills4Us hotline, which helped hundreds of women obtain the birth control that they needed.

Website: www.CoverHer.org

Hotline number: 1-866-745-5487