English: Manuscript handwritten by Walt Whitman, American poet, for his poem “Broadway, 1861” (Photo credit: Wikipedia)
As I wrote in a previous blog post “Nurses and Writing: Writers and Nurses” (3-31-11) the term “physician writer” is well-known and accepted by the general public, while the term “nurse writer” is not. Physician writer has had an extensive Wikipedia entry since March 2008.
Thanks to Dr. Thomas Lawrence Long,Associate Professor-in-residence at University of Connecticut School of Nursing, there is now a Wikipedia entry for “nurse writers.” Dr. Long has a PhD in English and a master’s degree in Theology. He teaches writing at a school of nursing and maintains a nurse writing website/blog resource called NursingWriting. Here is his Wikipedia definition of nurse writer:
“Nurse writers are registered nurses (RNs) who write for general audiences in the creative genres of poetry, fiction, and drama, as well as in creative non-fiction. The published work of the nurse writer is analogous to that of the physician writer, which may or may not deal explicitly with health topics but is informed by a professional experience of human vulnerability and acute observation.”
Nice definition, with the possible exception of the RN part. (Can’t an LPN writer be called a nurse writer? Plus, the RN designation is a relatively recent invention and may not translate to all countries). He also includes a list of nurse writers, beginning with 19th century writers, ranked by date of birth. Curiously, he left out Walt Whitman and Mary Seacole, who were both born before Florence Nightingale (who he lists first.) Including a well-known male nurse/writer (Whitman) and a nurse/writer of color (Seacole) would be a good idea. So someone out there who wants to add these, please do. While they’re at it they can add Mary Jane Nealon (Beautiful Unbroken: One Nurse’s Life, Graywolf Press, 2011) to the 21st century list.
Nurse writer Theresa Brown has a recent post (on Hunter College’s Center for Health Media and Policy blog Healthcetera) “Calling all nurse writers,” in which she encourages nurses to write. As Ms. Brown points out, nurses typically spend a lot of time with patients, have many stories to tell, and have a unique perspective on health care provision.
I have had many inquiries lately from nurses seeking advice on how to develop as creative writers. Here is my (very biased) advice:
1. Read. Read widely. Read great/classic literature as well as current writing from authors in a variety of genres. Read/subscribe to literary magazines. (My current list of literary journals includes Creative Nonfiction, The Examined Life, Bellevue Literary Review, and Fourth Genre. These are all top literary journals in my writing genre of literary nonfiction/narrative medicine.)
2. Write. Write something that is creative–for your eyes only– every day. Even if it is for just five minutes in a bathroom stall at work, during a sacred bathroom break, and you have to write on a paper towel–incorporate writing into your life.
3. Find/join a writer’s group/center in your community. In Seattle I recommend Hugo House as an excellent resource for writers at all ‘levels.’
4. Join NYU‘s Medical Humanities listserv. Even though this is ‘hosted’ by NYU’s medical school, it is interdisciplinary and their website is an excellent resource.
5. If you are an academic or have to do academic writing in your work, find a way to purge that part of your writing brain–or at least find a way to compartmentalize it. Academic writing is formulaic and anti-creative.
6. Find a way to share your writing. This could be in a supportive writing group or class, at open-mic venues in your community, by submitting to a journal, or by posting to a blog.
Creative Nonfiction’s anthology is currently in press and due to be released March 12, 2013. The book’s full title is I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse (Lee Gutkind, editor/In Fact Books).
Here is the official book blurb:
“This collection of true narratives reflects the dynamism and diversity of nurses, who provide the first vital line of patient care. Here, nurses remember their first ‘sticks,’ first births, and first deaths, and reflect on what gets them though long, demanding shifts, and keeps them in the profession. The stories reveal many voices from nurses at different stages of their careers: One nurse-in-training longs to be trusted with more ‘important’ procedures, while another questions her ability to care for nursing home residents. An efficient young emergency room nurse finds his life and career irrevocably changed by a car accident. A nurse practitioner wonders whether she has violated professional boundaries in her care for a homeless man with AIDS, and a home care case manager is the sole attendee at a funeral for one of her patients. What connects these stories is the passion and strength of the writers, who struggle against burnout and bureaucracy to serve their patients with skill, empathy, and strength.”
Lee Gutkind, dubbed by Vanity Fair as the godfather of creative nonfiction, is currently Distinguished Writer-in-Residence at Arizona State University’s Consortium for Science, Policy and Outcomes—where, among other things, he is “(…) helping scientists, engineers, nurses, lawyers, philosophers, etc share what they know with a general audience.” (Creative Nonfiction blog post 7-7-08).
In Fact Books is the new book imprint of the Creative Nonfiction Foundation. They have published two books this year: An Immense New Power to Heal: The Promise of Personalized Medicine(Lee Gutkind and Pagan Kennedy), and At the End of Life: True Stories About How We Die(Lee Gutkind, editor). Gutkind has a special interest in the narrative of medicine, beginning with his 1990 book Many Sleepless Nights: The World of Organ Transplantation(U. Pittsburg Press). In the introduction to the anthology he edited, Becoming a Doctor: From Student to Specialist, Doctor-writers Share Their Experiences (Norton/2010), Gutkind marvels at how there are so many writers who are doctors and doctors who are writers.
I look forward to reading Gutkind’s introduction to the “Becoming a Nurse” anthology, specifically how he addresses the paucity of nurses who are writers/writers who are nurses. Gutkind was reportedly surprised that they did not receive a flood of submissions for their “Becoming a Nurse” anthology, and wondered why there weren’t more nurses who write about their work.
I can think of many reasons why there are not more nurses who write (see my blog post “Nurses and Writing: Writers and Nurses” 3-31-11). Besides the fact that nursing is a servile, mainly female, “functional doer” profession that doesn’t require a basic four-year liberal arts education, nurses who want to write about their work are bullied out of it by their bosses. Quite frequently I hear from nurses who are writers (or who want to become published writers) that they have been threatened with termination by their employers if they continue to write about their nursing work—even when they are appropriately changing details in order to protect patient privacy. Because of the differences in professional power dynamics and the rigid hierarchy within the health care system, doctors who are writers do not have this barrier to writing—or at least not to the same extent.
But what that means is that Gutkind’s anthology on “becoming a nurse” is all the more important a contribution to the growing field of narrative medicine/nursing/health care. The book serves as a platform for a total of 21 nurses from around the world to tell their stories about what it means to become a nurse.
Transparency here: my essay “Next of Kin” is included in the anthology. My essay is the “a nurse practitioner wonders whether she has violated professional boundaries in her care for a homeless man with AIDS” in the book blurb. Thanks to a grant from 4Culture, I was able to complete the site visit/research for my essay (and book from which this essay is taken) last fall, in time to submit it to Creative Nonfiction.
At 320 pages and retailing at $15.95, the book I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse ( is available for pre-order from your favorite bookstore—like mine here in Seattle: Elliott Bay Book Company. And if you live in (or want to travel to) the Seattle area, stay tuned for information on several group readings/presentations by some of the authors from the anthology—at Elliott Bay Book Company and at the University of Washington Health Sciences Library. Both events are still in the planning stage and will most likely be in mid-March.
Harborview Hospital on First Hill seen from Pioneer Square neighborhood, Seattle, Washington, USA. (Photo credit: Wikipedia)
Harborview is the large King County hospital located on “Pill Hill” in the middle of Seattle. It is the only Level 1 Trauma Center for all of Washington, Alaska, Montana and Idaho. Harborview’s specific mission is to care for the county’s most vulnerable patients. As such, it forms the most visible part of the health care safety net for the Seattle area. I am always a bit awed by the scope of what they do, and have been able to see some of that firsthand this summer—from the high-tech trauma ICU to the low-tech/high touch Daryel /Somali Women’s Wellness Project.
A useful Harborview resource I highly recommend is Ethnomed. Ethnomed is Harborview Medical Center‘s ethnic medicine website. The main purpose of Ethnomed is to help busy health care providers integrate cultural information into their clinical practice. While Ethnomed’s focus is on the main refugee and immigrant population groups currently coming to and residing in Seattle/King County, there is also general cross-cultural information that would be useful in any area. There are links to specific cultures, to different clinical topics, and links to printable patient education handouts in different languages including Spanish. On the main page there’s a link to sign-up for Ethnomed’s electronic newsletter.
On the red eye this week from Seattle to NYC I was reminded of Washington State’s Whooping Cough (pertussis) epidemic. It was a full flight and at least ten people seated near me had deep hacking coughs the entire flight. It’s likely that at least a few of them had untreated pertussis and have now spread it to susceptible people. There were a few small infants on the flight and they are the most vulnerable to getting severe pertussis and dying of it. Adults with pertussis can have a cough that is so forceful it can cause them to vomit. A milder form of the cough can last for months. And pertussis is highly preventable with appropriate vaccination.
In Washington State we are in the midst of a pertussis epidemic. Mary Selecky, the Secretary of Health at the Washington State Department of Health, officially declared an epidemic on April 3, 2012, even though epidemiologic data indicate that pertussis cases exceeded the epidemic or outbreak threshold in late December, 2011. Declaring an epidemic allowed Governor Christine Gregoire to mobilize state emergency funds to provide more pertussis vaccinations to uninsured people in Washington State. It also allowed her to call on assistance from the federal government in the form of CDC investigators to monitor and advise intervention strategies.
According to the Washington State Department of Health website, through the week of May 19th, a total of 1,738 cases of pertussis have been reported in Washington State for 2012, compared to 146 cases for the same time period in 2011. Since January 114 infants less than 12 months have been hospitalized with pertussis; 23 of those were under three months of age and presumably were the sickest and probably required the longest hospitalizations. No deaths have been reported from this year’s pertussis epidemic in the state.
Current US recommendations for vaccination against pertussis include the usual combination childhood vaccination series starting at two months of age, then a booster shot for adolescents ages 11-12 years. A more recent recommendation is for an additional booster shot for adults who are parents or caregivers of infants less than 12 months of age—the idea being that if the adults are vaccinated they are less likely to get pertussis and pass it on to susceptible infants in their care. Health care providers, especially the front-line staff of nurses, are included in this recommendation. This approach of targeting pertussis vaccination to the main caregivers of infants is called cocooning.
I’ve been monitoring the news coverage of Washington State’s pertussis epidemic. The Seattle Times published an article, “Whooping cough epidemic declared in Wash. State” (Donna Gordon Blankenship, 5-10-12). In her article, Ms. Blankenship emphasized the need for adults to get vaccinated as a way to protect infants, and quoted a CDC official calling this a “cocoon of protection.” She also quoted this same CDC official as stating that Washington State’s current pertussis epidemic has nothing to do with the anti-vaccination movement, and instead attributed it to better disease surveillance, the cyclical nature of pertussis infections, and an aging population with waning immunity as the vaccine wears off. That all made sense to me—except for the matter of it not being related to the antivaccination movement. How could it not be at least partially responsible for the current epidemic?
A New York Times article “Cutbacks hurt a state’s response to whooping cough” (Kirk Johnson, 5-12-12) emphasized Washington State’s budget crisis and recent cuts to the public health infrastructure as contributing factors to our states’ current pertussis epidemic. He pointed out that changes in the vaccine to make it have less side effects have also made it less effective over—immunity tends to wane faster. He included quotes from a school nurse (yeah school nurses!) in Skagit County, north of Seattle, which is the hardest hit county so far. He referenced the fact that Washington State has the highest percentage of parents who voluntarily exempted their children from vaccines out of fear of side effects or for philosophical reasons. Studies have shown that vaccine refusers tend to cluster, are often middle-class, college educated white people with antigovernment, anti-establishment views. They like living in the Eco-topia of Puget Sound.
A related topic I find fascinating is the seemingly rising trend of antivaccination sentiments among nurses—and the fact that an astonishingly low percentage of pediatric nurses get the booster vaccine for pertussis, despite CDC recommendations for them being part of the ‘cocooning’. I’ll deal with that issue in a follow-up post next week—unless I come down with pertussis thanks to my airplane seatmates. (I have had the pertussis booster so am counting on it working.)
To continue the baby theme and to remind myself–and all of you–about the good stuff of life and of nursing, I want to highlight the Nurse-Family Partnership Program. As they state on their website, the Nurse-Family Partnership Program “is an evidence-based community healthcare program that empowers low-income, first-time mothers to become confident parents and strong women by partnering with nurse home visits.” Based on independent research, for every public health dollar a community invests in the Nurse-Family Partnership Program, the community gets at least five dollars in return from savings in social services, criminal justice and healthcare costs. The program has now been adopted by over 400 countries and 29 states in the US–and is growing due to its wide-spread appeal and proven cost-effectiveness.
I have the good fortune of working with two local nurses involved with the Nurse Family Partnership in Seattle–King County. It should come as no surprise that they are some of the happiest and seemingly healthiest most grounded of all nurses. They always make my day and remind me of the good stuff of nursing.
Here’s a link to my favorite video of the Nurse-Family Partnership–from New York City. Healthy happy babies and moms and nurses! What’s not to like?
OK–the puppies snuck in here and the kittens are close behind….
I am writing this post with a newly hennaed hand, given to me today by a talented Somali woman at Harborview’s Daryel Project. Daryel roughly translates as “Wellness” in Somali. Bria Chakofsky-Lewey, a community health nurse at Harborview Medical Center’s Community House Calls Program, started the project several years ago. The Community House Calls Program provides interpreters and cultural mediators for the different immigrant/refugee populations in the Seattle area.
In her work with Somali women, Bria was noticing that many of the women had complaints of pain that doctors were unable to treat through medication or physical therapy. She suspected that massage would be more culturally acceptable and effective for addressing the women’s pain—but it needed to be massage adapted to the women’s religious beliefs and cultural practices. She couldn’t just send the Somali women off to some hippy-dippy massage practice and expect it to work. Bria also knew from her work with the women that they suffered from isolation in this strange new country and big city of Seattle. Many had also experienced multiple traumas in their homeland, and the psychic effects of these traumas could be expressed as body pain. So she started Daryel with the help of female Somali interpreters/cultural brokers.
The Daryel program is offered every Sunday afternoon at a community center/senior center in Rainier Valley/ south Seattle. Today there were about a dozen Somali women who brought traditional food to share. They usually have group yoga sessions as well as individual/private massage, mixed in with wellness/health information.
This past summer I attended one of their yoga group sessions, and found them refreshingly raucous—the women really enjoy talking to each other and laughing as they try out yoga poses. Happy yoga instead of the usual overly serious yoga usually experienced. (For wonderful photo documentation of Daryel—and visual proof of happy yoga–check out Seattle Times photographer Erika Schultz’s photos here). Today, one of the Somali women commented that when Bria had first introduced the idea of yoga, she had been skeptical—but now she looked forward to it and felt refreshed afterwards. Another Somali woman at today’s session told everyone that she was there because her doctor referred her to the program.
Daryel is always on the lookout for additional volunteer female massage therapists. On the Sundays when they can’t get a massage therapist, the women sit in a circle and give each other backrubs. It is an amazingly uplifting program and a fine example of what
All nurses should be required to take college-level micro/macro economics. Trying to teach nursing students the basics of health policy is almost impossible if they are not comfortable with economic terms and concepts.
I was reminded of this recently, when in a fit of fall office cleaning, I finally gave away my copy of Samuelson’s economics textbook. It was stuffed full of class notes, health economic diagrams and highlighted paragraphs. Two quarters of economics were required for my public health degree, and both were taught by a passionate German economist who waved dollar bills around his head for effect. I begrudgingly signed up for his course, found it—and him—fascinating, and it has been the single most useful class I’ve ever taken in any of my health care programs. That and a water and sanitation class: the basics of health care.
Economics of health care finds its way into my mailbox. My home mail these days mainly consists of utility bills and glossy medical newsletters by local hospitals. The cover of the latest one (photographed here) is oh so Seattle, showing two smiling but scary looking roller derby women. I’ve met one of the women (off rink thankfully) and she is quite nice in person. Inside the hospital newsletter/magazine is a two page article about the women’s roller derby team, the various sports injuries team members have endured, their team orthopedist and the orthopedic surgical ‘cures’ performed at the hospital. I get similar hospital newsletters from two other local hospitals I’ve been a patient at. All three highlight the hospital cash cows of cardiac surgery, cancer care, and orthopedic surgery (none of which I’ve been there for). I’ve been successful getting off the mailing lists of most all major catalog/merchandise companies, but have not been able to stop getting these hospital newsletter/magazines. It is oh so NOT Seattle, being decidedly un-green and tree/salmon-killing.
I know that I am bombarded with these hospital newsletters because: 1) I have decent health insurance, 2) I’m getting towards the age when cardiac/cancer/ortho surgeries may be needed, 3) I might be crazy enough and able to afford to make a monetary donation to a certain hospital unit/program, and 4) perhaps because I am a health care provider and can recommend certain hospitals to my friends and relatives.
Most experts on hospital advertising agree that the main purpose of such advertising is brand recognition—and that hospital advertising increases (as do the costs obviously) as competition increases for insured/affluent/paying customer-patients. If you ask hospital PR people (I have), they will say their newsletters are an important patient education/health literacy effort—a public service of sorts. But when you analyze the content of articles and print ads, this claim doesn’t hold up. Most are not written or reviewed by clinically-knowledgeable people, they play up emotional content (her heart was fixed and she can now play with puppies and kittens and grandchildren!), and they exaggerate benefits/leave out adverse effects of surgeries and other treatments. Hardly real health education. Most industrialized countries ban or severely restrict health care advertising.
A fascinating underlying reason for hospital/physician advertising (as I learned from Paul Levy’s blog post on this topic), is that it strokes the egos of physicians and senior executives of hospitals. The doctor egos need stroking because they make money for the hospitals and doctors are free agents and can move to a different/higher paying hospital. Funny how there aren’t too many hospital ads or newsletter articles highlighting nurses.
The final reason that health care economics is on my mind is the excellent article in today’s Seattle Times by health reporter Carol Ostrom: “ERBuilding Boom is Wrong Prescription, Experts Say.” In this article she discusses the economic and regulatory issues behind our Seattle-area resort-spa-emergency department craziness—a problem not unique to our region. If you want to understand health care, take or review Economics 101.
The following is an essay I recently wrote about the health professions regulatory system in the US. It is written in the format for Narrative Matter’s “narrative policy” essay, and as such is longer than my typical blog posts. Please share widely, with proper attribution, of course…. I want to thank Morris M. Kleiner for reviewing drafts of the essay for accuracy.
One evening this past April, I was sitting on the floor of O’Hare airport, near a packed gate, waiting to board my flight back home to Seattle. Headphones on, working on my laptop, I clicked on the Seattle Times news site. “Nurses’ Death Follows Tragedy,” was the title of the lead story, with the byline summary, “The suicide of Kimberly Hiatt, a nurse who accidentally gave an infant a fatal overdose last year at Seattle Children’s hospital, has closed an investigation but opened wounds for her friends and family members.” (Carol Ostrom, The Seattle Times, 21 April 2011)
I read the brief article, and then stared at the ubiquitous overhead TV screens in the waiting area, wondering why her death wasn’t included in the endless loop of news. Kim’s story seemed weighty—national in scope. Kim was 50 when she died from hanging herself. She had miscalculated a medication dosage for a medically fragile infant, and immediately reported her mistake. This was the first serious medical error Kim had made in her 25-year career. An official medical report stated it was unclear that the medication error contributed to the infant’s death. But the hospital fired Kim. And the Washington State Nursing Quality Assurance Commission—the sate nurse licensing unit—fined her $3,000 and placed such severe restrictions on her nursing license that she could no longer find employment as a nurse.
In the weeks following news of Kim’s death, I was left wondering how this could have happened—not the medical error—but the cascade of negative consequences for Kim. I thought I knew how health systems worked; I had a doctorate in health policy. And I was convinced that Washington State had a progressive health professions regulatory system—that things like this couldn’t happen here—or now.
The week after Kim’s death hit the news, the topic of my health policy class was quality of care. I planned to talk about just culture: having open, fair, and just organizational cultures supportive of patient safety. There is strong evidence indicating that just cultures are more effective at ensuring patient safety than are traditional punitive health care work climates. Kim was an alumnus of the nursing school where I taught. Most of my nursing students were graduating in a month and would obtain their Washington State nursing license. Our class discussion was no longer at the theoretical level.
But I had a more personal connection with the news of Kim’s death: I was seeking closure to an investigation of my own nursing license by a health regulatory board. I was seeking both emotional and literal closure. For the past year, I had been writing a book about my work as a nurse practitioner providing health care to homeless people in the 1980s. Back then, my life and my career had been derailed by a collision with a state licensing system.
Early in my career as a nurse practitioner, I had my nursing license investigated by the Virginia Health Regulatory Boards of Medicine and Nursing. At the time, I was the sole provider at a clinic for Richmond’s homeless population. I was working within written protocols with a supervising physician available for telephone consultation. This was in compliance with the practice regulations in Virginia. In my second year of working at the clinic, I had an unannounced visit by an investigator for the Health Regulatory Board. I remember the day—and him—vividly.
I noticed an older man walk into the waiting room of the clinic. His shoes were what I noticed first: beige puffy comfort shoes with Velcro straps. He pulled out a business card and handed it to me.
“ I’m doing an investigation of a complaint made to the Boards of Medicine and Nursing about your practice.”
I was stunned. My mind raced through worst-case scenarios: had I killed a patient?
“What complaint? And where did it come from?” I asked.
“I can’t tell you that information. It was requested to remain anonymous. I’m just gathering information for my supervisors.”
He asked to see my patient files and medication dispensary. He stayed for several hours, interrupting clinic.
The health regulatory board investigation of my nursing license sent destructive tentacles—like mold hyphae—throughout my life. The process of the investigation remained unclear to me. I was told they were investigating my scope of practice, including prescribing of medications. Fear was the first thing I felt: fear verging on terror. The most immediate threat was the potential loss of my nursing license. This would have devastating effects on my family since my salary supported all of us. My husband was still in seminary, and I was paying for childcare for our then five-month-old son so I could work and my husband could finish school. An additional threat was the loss of my professional reputation: people assume there are valid reasons for an investigation.
For several months after the investigator’s initial visit, I couldn’t sleep well. I lost so much weight that I had to stop nursing my baby before he was six months old, and that made me feel even more guilt as a working mother. My husband and I got in spats. Due to the ongoing investigation, I was forced to work at the clinic in reduced capacity. The Health Regulatory Board kept threatening to close the clinic, and they finally did for several weeks in the eighth month of the investigation.
The Board of Directors for the clinic where I worked responded to the investigation by increasing their efforts to hire a full-time physician. No physicians were clamoring to do this work. The clinic Executive Director enlisted the help of a volunteer lawyer who talked with lawyers at the Virginia Office of the Attorney General, who advised the Health Regulatory Board. No one seemed to know what nurse practitioners could and couldn’t do. I was told it was a contested area of state law, and that they had never had a nurse practitioner as the only health care provider for a clinic. Even at the time, I knew I was a pawn in the grand political game of professional turf battles.
I was treated as if I were guilty until proven innocent. Investigators and lawyers told me not to talk to anyone about the situation or it could make the outcome worse—effectively issuing a gag order and isolating me from seeking help. More recently, I’ve asked myself why I didn’t get my own lawyer back then. No one advised me to and I couldn’t afford one. There were large gaps of time of not hearing anything about the investigation, but I was always aware that it was unresolved, like a large noose dangling above my head that could come down around my neck at any time.
The stress of the investigation contributed to the dissolution of my marriage, loss of my job, and my own spiral into homelessness. I seriously contemplated suicide on several occasions during the investigation. It was such a painful chapter of my life that I had not been able to look at it before—or talk about it.
Twenty-five years later, as I was writing a book about my work with people experiencing homelessness, I wanted to include the investigation of my license. I realized I had no documentation on it. When I read the news of Kim’s death in April of this year, I was awaiting a reply from the Virginia Board of Nursing to my written request for a copy of my case file. I had expected some resistance, but was confident I would eventually see copies of the investigation. I asked for redacted records: I was not interested in knowing who had ratted on me.
Jay Douglas, the Executive Director of the Virginia Board of Nursing, refused my request. In a telephone conversation with me in late February, she stated that they were confidential records, “Board property, and besides, Virginia’s Freedom of Information Act doesn’t apply to people who are not state residents.” This made me angry: confidential records on me by a government agency that I wasn’t allowed to see? This wasn’t a matter of national security; I wasn’t a terrorist. And freedom of information—the right to a transparent and accountable government—only applies to certain citizens? I studied the relevant laws and wrote a polite rebuttal based on the Code of Virginia. While I waited for her reply, I began to do more research on health care workforce regulatory systems. Between my own experience and that of Kim Hiatt, I wanted a better understanding of how these systems worked.
Health Care Workforce Regulation
All states in the US license health care professionals, as well as an increasing number of other occupations ranging from architects to wrestlers, and even frog farmers. These are labor market institutions, administrative agencies with executive, legislative and judicial powers, ostensibly under public mandate to protect public health and safety. According to economist Morris M. Kleiner in Licensing Occupations: Ensuring Quality or Restricting Competition? (Upjohn Institute Press, 2006), they are self-policing, self-regulating bodies, and have been identified as state-sanctioned monopolies. The most autonomous units of state health care licensing systems—medical boards—have been formed by powerful professional associations and their lobbying arms which make large campaign contributions to state legislators. Many state legislators who serve on health subcommittees, which make the health care workforce regulations, are themselves health care providers and members of the professional organizations “funding” state regulatory systems.
But do these state health regulatory systems really protect public health? While there may be the perception of protection from ‘charlatans, quacks, sexual predators and drug abusers,’ it is not supported by data. Kleiner points out that there are no data to support improvement in overall quality of health care by state health regulatory systems. There is some indication that higher-income people gain from stricter health professions licensing, but there is no measurable impact on overall quality of health care for the population as a whole. There is robust evidence that by effectively limiting supply, licensing of health professions increases overall health care costs, and creates longer wait times for health care services. This worsens health inequities in the US. In addition, licensing laws that standardize health care services effectively restrict innovation and improvements in the health care system. Health care workforce regulatory systems in all states are notoriously inefficient, with many taking over two years to investigate and resolve even the most serious of cases. There are wide inconsistencies between the different health professions licensing boards in how they discipline individual health care providers for similar infractions, as well as inconsistencies between states.
The Pew Health Professions Commission Taskforce on Health Care Workforce Regulation—a national, nonpartisan panel of experts—issued a series of reports in the late 1990s’. They called this a significant public health policy issue that flies under the radar. They stated there is a lack of oversight and accountability of the state regulatory systems, as well as a lack of effort to provide consumers access to information on health care providers’ practice histories. They called for national scope-of-practice standards, as well as consideration of changing from licensure to certification of health care providers, which is more likely to improve overall quality of care while not driving up health care costs. According to the reports, the next best alternative to a certification system would be to appoint more neutral parties as the decision makers on licensing boards, with members of the profession available to advise board members on technical issues.
None of the major Pew Commission recommended changes have been made. Instead, there have been incremental reforms, including improved websites, and uniform sanctioning guidelines, which sound good in theory, but have not proven to be effective in practice. According to Kleiner and the Pew Commission experts, powerful professional associations that helped create the licensing system in the first place, benefit from its continued existence. Higher income health professionals benefit from limiting supply by restricting competition, thus boosting their own salaries. Administrators at universities and technical schools support its continuance, since their institutions benefit financially from licensing requirements tied to entry and continuing education. And the current state licensing system continues because the risk-averse voting public has been repeatedly told it is an effective system protecting them from harm by sorting out the “bad apples” of incompetent, impaired, immoral health care providers.
______________________________
Ms. Douglas informed me that without a court order she refused to provide a redacted copy of my individual case file. It took hiring a lawyer to convince her to provide a copy of the Case Decision Memorandum for the investigation of my nursing license. Dated February 13, 1989, the memo stated that if I continued consulting with my supervising physician as reported, no further action would be taken. It concluded, “There have been no further complaints or problems and the case is closed with no violation and no sanctions.” The memo confirmed that it had been a scope of practice issue, and that the Medical Board had wanted tighter reign on my nursing practice. What surprised me though was the date of the memo. While I had remembered the investigation as being a painfully long process, I hadn’t realized it took 16 months. My husband and I had separated a few days before the official closure of my case. And by that time I was disillusioned with nursing and with our health care system.
Ironically, the same week I received the one-page Case Decision Memorandum, I received 1,500 pages of redacted, detailed information on the case of Kimberly Hiatt from the Washington State Health Department. I requested Kim’s files in order to better understand the current decision-making process of the Nursing Commission in a state where I am responsible for teaching nursing students health policy. And in a state where I maintain nurse and nurse practitioner licenses. Reading through Kim’s records only deepened my distrust of the health professions regulatory system. The Washington State Nursing Commission refused the request by Kim’s lawyer for copies of their investigative reports in order to adequately advise his client.
I remind myself that Ms. Douglas and others in the health regulatory system are well-intentioned people who believe their work promotes public health and safety. But the system they work within is not part of a just culture. The current regulatory system is not working to protect public health and safety. It is not working for the majority of health care providers, who justifiably view it as capricious, punitive, and with little oversight or accountability. If we are to have a higher quality and more equitable health care system in our country, it is essential that we reform the byzantine health professions licensing system.
Subtitled: Down Syndrome, Family, and the Stories We Inherit, by George Estreich (Southern Methodist University Press, 2011) is a memoir of one father’s struggle to care for, understand, and love his daughter Laura who is born with Down Syndrome. But it is so much more than that. Abraham Verghese states that Estreich’s book “…will become a part of the canon of narratives that are studied and taught in medical humanities courses.” An audacious statement—and the notion of a “canon of narratives’ somehow makes me cringe with its connotation of dogma—but The Shape of the Eye does stand out in the growing crowd of medical memoirs.
When I received a copy of The Shape of the Eye a week ago, I was finishing reading The World I Live In by Helen Keller, and so was already deep into the world of stigma, disability, and language. I live on a steady diet of books and seldom ever regress to my adolescent tendency to devour books when they are delicious. But I read The Shape of the Eye in one long luxurious sitting. It is not like when I stayed up all night reading The Lord of the Flies when I was twelve—under the bed covers with a flashlight. I somehow dozed through the part where Piggy gets hurled to his death. I thought my classmates were making it up during class discussion. Instead, I read The Shape of the Eye during the day, fully awake and caffeinated, and I somehow simultaneously devoured and savored the book. It is impossible to simply devour poetry, and this book is written through a poet’s eye. Estreich’s first book is Textbook Illustrations of the Human Body (Cloudbank Books, 2004), a powerful collection of poetry.
What I like most about The Shape of the Eye is that Estriech manages to weave the main narrative of Laura’s birth, heart surgery and other struggles to live, with his own identities—Japanese mother, Jewish father, stay-at-home father, husband, writer/poet, builder of furniture and other home improvement projects. But all of these intertwined stories are teased apart in places—like the brainy bespectacled Piggy—revealing the science and history behind Down Syndrome. Estreich is also a new and improved version of the scientist, bringing both wry humor and a poet’s exquisite sensitivity to the meaning and metaphor within ‘hard facts.’. A lasting image I have from this book is his description of a pediatric heart surgery parent education pamphlet complete with a diapered anatomically drawn heart. I’ve seen those pamphlets and I’ve used some with patients even though I knew they were ludicrous. The things we do in the service of health care… As I read, I kept thinking of the work of the Australian medical sociologist Deborah Lupton (Medicine as Culture) and her discourse analysis of health education messages. In The Shape of the Eye Estriech essentially ‘does’ discourse analysis—Mongoloid Idiocy, the Simian Crease, Mental Retardation, etc—but in a nonacademic and much more accessible way.
As an academic, I can see Verghese’s point about how The Shape of the Eye is destined to be studied in medical humanities courses. And in disability studies. And in psych/mental health. And in special education. And in all our other strange academic divisions. But mostly I see The Shape of the Eye being savored—like Estreich does for Laura as a person—just for itself.
Postscript: I had the pleasure today of attending George Estreich’s reading of The Shape of the Eye at Elliott Bay Book Company here in Seattle. As you can imagine from reading any of Estreich’s writing, in person he is witty, wry and humble, and just a pleasure to be around—one of those people who gives energy and doesn’t suck it out from the world around him. As was fitting for today, the tenth anniversary of 9/11, he read one of his poems echoing images of post-9/11 Manhattan. But one of my favorite of his poems in Textbook Illustrations of the Human Body is“Codes.” Referring to an interaction with his mother (also a writer), he writes:
“But a life of writing/is not necessarily happy.
Be careful, she says. Chores can interfere with your work.
Our truest signatures/ are endless, and in code.” (p.13)
Or prison, or juvenile detention, or the catchall, misleading term “correctional facility.” These—along with capital punishment— have been on my mind lately for a variety of reasons.
I recently was offered a job in the health care unit of a nearby county jail. Several years ago I was offered a job in the health care unit of the King County Jail in downtown Seattle. I seriously considered both jobs and went through interviews with the supervisors at both locations. I spent time in the King County Jail and shadowed some of the nurses who work there. For both jobs I was impressed by the level of compassion combined with level-headedness and toughness of the health care staff members. I tried hard to imagine myself working in this sort of environment. In the end, I turned both jobs down. At the King County Jail, as I was interviewing, a prisoner hurled himself down the center doughnut hole opening of the building, falling five floors before he landed on his head on the health care unit beside the supervisor’s office door. I decided that it was a level of trauma that I didn’t want in my life. With the latest jail health job offer, I turned it down because I realized I couldn’t reconcile myself with the complicated ethics of such health care.
In jail and in prison health care is openly acknowledged as band-aid care only—minimal and low-cost treatment for immediate health problems to keep the prisoners alive until they are either killed on death row or have served their sentences. There is no preventative care. A common rhetorical question by prison health care workers is, “Would you rather we spend money and time on health care treatment of offenders or of their victims?” That sounds good in theory, but really, how much money actually goes to help victims of violent crimes? Underneath, it is a political statement by politicians wanting to look tough on crime. Prison is viewed solely as punishment, not as rehabilitation. If as a society we were serious about rehabilitation, investment in preventative health care for prisoners would make sense. But this would only make sense ethically if we had access to basic health care as a basic human right for all people in the US. And since African-Americas, American Indians, poor people, and persons with mental illness are overrepresented in out prison population, what exactly would we be rehabilitating them from?
Instead of working in jail health care, I have decided to work in juvenile detention. This is a group of young people I am already familiar with, since many homeless and street-involved young people revolve through “juvi” as they refer to it. I won’t be working in health care per se, but rather in a health-related activity. This is a volunteer position through Pongo Teen Writing Project. Pongo is a volunteer nonprofit program founded by Richard Gold in 1992. Richard is a poet and former insider in the book publishing world. Pongo’s mission is to help teens who are homeless, in jail, in long-term psychiatric facilities, or otherwise facing challenging lives—to write and express themselves through poetry. I’ve known about Pongo ever since moving to Seattle in 1994. Many of the homeless teens I saw in clinic would bring in journals full of poems they had started writing, sometimes first with the prompting of Pongo staff members in juvi or in homeless youth drop-in centers around town. The teens often wanted to share a particular poem with me, and it became part of the health care encounter. Sometimes they were willing to ask for help with chemical dependency or mental health issues for the first time. As Richard Gold says in a video posted on Pongo’s website, “Poetry fulfills a very practical, intellectual function in healing.”
For me, this is a way I can ‘do’ jail health care. At least I think so. I believe that there are sufficient support resources within juvi—counselors, therapists, teachers, doctors and nurses—the teens can access to help them deal with difficult memories or emotions excavated through the poetry. I also trust in the general truthfulness of the “self-dosing” theory in PTSD: people will only write about/draw about pieces of trauma they are prepared to deal with at the time. I believe that the Pongo Teen Writing Project goes beyond helping individual teens give voice to their lives, but also shares those in an appropriate way (e.g.: with the teen’s permission and using pseudonyms) to help create positive change in the complex web of social supports that have failed these young people.
