Pride in Health Care

IMG_4620The gay pride flag was raised at each of the hospitals in the University of Washington Medicine system in Seattle last week, including this flag atop the main tower at Harborview Medical Center. UW Medicine was the first medical system in the country to do this. I am very proud of my employer.

Yesterday, before I ducked inside the air-conditioned auditorium classroom at Harborview where I am teaching a health humanities course to nurses, I stood outside in the blazing hot sun determined to catch a photo of the flag unfurled in all its glory–beside Old Glory, our American flag. As I gazed up at the tower, I thought about what it means for a hospital to be ‘out’ with such a diversity statement.

Flying the gay pride flag is not a magic wand–poof!–proclaiming that we have cured all bias and discrimination (including the pernicious racial discrimination) within these hallowed medical walls. But it is an important step in the correct direction.

I went back inside the hospital to teach my class, simultaneously encouraged by how far we have come as a nation–as a health care system–and dismayed at how far we need to go to truly become one nation, one people, indivisible, under god or the wide blue sky.

Boots On, For My Father

IMG_1232 - Version 3On Father’s Day, here is a piece I wrote about my father’s last years of life, and his quest to die at home, with his boots on, which he did last fall, despite a whole Southern Gothic region-full of subtext and intrigue. If you haven’t yet read Atul Gawande’s powerful and important book, Being Mortal: Medicine and What Matters in the End (Metropolitan Books, 2014), I highly recommend it. The following essay, “Home Death,” I wrote appeared in the Johns Hopkins Public Health Magazine (Spring 2013).

“Natural death, almost by definition, means something slow, smelly and painful. Even at that, it makes a difference if you can achieve it in your own home and not in a public institution.” ~ George Orwell

In his essay “How the Poor Die,” Eric Arthur Blair (pen name George Orwell) describes his month-long stay in a French public hospital in the winter of 1929. He was treated for pneumonia in a crowded open-ward public hospital, where he observed many indigent patients dying under the indifferent care of “slatternly nurses” and doctors and medical students “… with a seeming lack of any perception that the patients were human beings.” He fled the hospital before being discharged, but the hospital was a probable source of the tuberculosis that would later cause his death, at age 46, in a London public hospital.

Like the majority of people in the U.S., my father would rather not die in a hospital—public or private. Studies consistently indicate that more than 80% of patients wish to avoid hospitalization and intensive care treatment during the terminal phase of an illness. In most cases, hospital deaths are considered to be less than ‘good deaths’ because they are not where patients want to die, combined with the high-cost of hospital end-of-life care.

My father would rather die at home with his boots and gardening gloves on, surrounded by family and trusted caregivers. At eighty-nine years old and suffering from the ravages of advanced congestive heart failure, my father is one of the burgeoning number of the ‘very old’ frail elderly facing end-of-life decisions. And I am one of the even larger number of baby boomers approaching retirement while simultaneously helping care for an elderly family member. My father lives in Virginia; I live across the country in Seattle. Nevertheless, my father appointed me his health care proxy. I naively thought that being a nurse practitioner with an advanced degree in public health would help stack the odds in favor of my father having the home death he desires.

I know what it is like when end-of-life care works well. Four years ago I helped my mother have a relatively peaceful home death in hospice. She was eighty-five years old and died of breast and lung cancer. End-of-life predictions are, of course, much more accurate for patients with cancer than they are for patients with congestive heart failure. I had to intervene with her oncologist to stop the chemotherapy that was clearly doing more harm than good. But I expected that. Oncologists are programmed for aggressive treatment and have a difficult time, as the writer Atul Gawande says, letting go. My mother died six weeks after stopping chemotherapy, and two days after learning that her vote helped turn Virginia for Obama. Hers was a good death.

Although I was able to take time off from my job to help my mother in her final illness, my father was her primary home caregiver. Now, with my father living alone, he is hiring caregivers so he can qualify for home hospice. In the past six weeks he has moved through four different health care settings: acute care teaching hospital, nursing home for physical rehabilitation, back to his private home with visiting nursing, and now with home hospice. Besides Medicare, my father has good supplemental private health insurance, and he has sufficient savings to cover out-of-pocket expenses.

Despite my father’s resources, helping him navigate his final days has been a Kafkaesque nightmare tinged with perverse humor. Having worked within the U.S. health care system as a primary care provider for thirty years, I was prepared for the lack of care coordination across health care settings. I was even prepared for his myriad health care providers misplacing his Advance Medical Directives. I keep a scanned copy with me at all times to e-mail or fax it to whichever health care site he’s currently in. But I wasn’t prepared for April Fools’ Day this year.

For transparency and context I should add that I teach health policy to nursing students at a major academic medical center in Seattle. On April Fools’ Day, a Sunday this year, I was in Seattle preparing notes for my upcoming class presentation on patient-centered care. One of my father’s neighbors in Virginia called to tell me my father had skipped church to go to the emergency department of the nearby teaching hospital. He had been complaining of shortness of breath and not feeling well. It takes something serious for my father to miss church.

When I called the hospital to find out his status, the emergency department clerk told me I needed to tell her my father’s “secret HIPAA patient password” before she could even tell me whether he was in the hospital. She added that they strictly enforce this password because the hospital has so many patients involved in gang shootings and domestic violence. She didn’t change her mind when I pointed out that my father was an eighty-eight year old widower and retired Presbyterian minister who had signed his Advance Medical Directive forms appointing me his health care prox in their hospital administrative offices less than a year ago. She said they had no record of it and they had to treat all patients the same, so my only option was to come to the hospital in person. I did make a notation for my health policy class that this interaction was a good example of the need for improved patient-centered care, as well as for more appropriate use of patient privacy rules.

By the time I got through the hospital gatekeepers to be able to talk to my father, a cardiac surgeon had been called down to the emergency department and had convinced him to sign consent forms for a high-risk, high cost, low-to-no-benefit, quasi-experimental transapical arotic valve replacement. Less than six months post-surgery, my father was back in the same teaching hospital for rapidly accelerating heart failure, and I was flying in from Seattle to advocate transferring him to home hospice.

In its current form, our healthcare system conspires against the possibility of older people having a natural, good death at home. While there are pockets of improvement in terms of fewer hospital deaths for the very old, there are accompanying shifts towards more patients seeing ten or more medical specialists in their last six months of life, greater use of intensive care units, and more patients dying in nursing homes. As with my father’s experience, much of the blame falls on teaching hospitals: tenacious places known for medically aggressive treatment. I get the argument that this aggressiveness is what drives medical innovation and makes U.S. high-tech medical care among the best in the world. But when it comes to the care of the very old, that argument does not hold up—unless the elderly are donating their bodies to medical science before they are dead.

According to many studies (reflected in the Dartmouth Atlas of Health Care data) the number of teaching hospital beds in a region is associated with a higher percentage of hospital deaths without a concomitant improvement in overall population health. If the primary mission of teaching hospitals is to educate our future health care professionals, what is it we are teaching them about death and end-of-life care? Perhaps it would benefit everyone if we who work in academic medical centers remember that our students will soon be taking care of us in our own final days.

Josephine Ensign, MPH ’92, DrPH ‘96, is a nurse and writer who teaches health policy at the University of Washington in Seattle.

Just Like Us

IMG_4517This was the first in my summer reading challenge (with a health humanities/social justice slant): Just Like Us: The True Story of Four Mexican Girls Coming of Age in America, by Helen Thorpe (Scribner, 2009). I ran across this book last month at Denver’s lovely downtown ‘LoDo’ Tattered Cover Bookstore (a highly recommended indie bookstore). I asked the helpful information desk woman to direct me to books by local authors, and this was one she recommended.

I give it a one (sunny peace symbol) out of five–also known as ‘I did not like it.’ While it is generally well written, I found it to be too superficial in its treatment of the complex issue of immigration. At one point in the book, Thorpe likens her struggles to be taken seriously as a journalist (while being known mainly as the wife of the Mayor of Denver) with the Mexican young women’s struggles to assimilate to life in the United States. Really? How did that statement get past the book’s editors? In addition, the author lost credibility to me when she admitted to not speaking or understanding Spanish, when the families of the four girls she highlights in the book are mono-lingual Spanish-speaking.

Apolitical Intellectuals Teaching Health Policy?

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Collection of health politics and policy teaching materials on my desk at work.

Is it desirable, indeed, is it even possible to teach health policy without also teaching politics? What would it mean to be an apolitical intellectual teaching health policy to future health care professional students?

As a lyrical definition of ‘apolitical intellectual,’ here are the first stanzas of  a poem by the Guatemalan poet and revolutionary Otto Renee Castillo, translated by Francisco X Alarcón. The full text of poem is available here and a powerful ‘spoken word’ version using a slightly different translation is available here .

APOLITICAL INTELLECTUALS
One day
the apolitical
intellectuals
of my country
will be interrogated
by the humblest
of our people.

They will be asked
what they did
when their country was slowly
dying out,
like a sweet campfire,
small and abandoned.

Basically, as I would interpret it, apolitical intellectuals have a lot of book knowledge and an escapist ‘life of the mind’ sort of attitude, but no practical, down-to-earth working knowledge of power and privilege. I do not aspire to be an apolitical intellectual teaching health policy to future health care professionals.

But I do aspire to be balanced and fair in my approach to teaching health policy. That is one of my prime duties as a teacher. Since I lean towards the Progressive side of politics, especially as politics relates to health and social justice issues, I bring that lens to the teaching of health policy. Many of my health policy current events articles come from the NYT or the (non-partisan but still left-leaning) Kaiser Family Foundation, and many of my videos (as in the photo above) are produced by PBS. I have tried, with limited success, to bring in more Conservative-leaning course readings, videos, and guest speakers. I find that it is difficult to find credible, intelligent, research/data-backed Conservative sources.

If I were teaching health policy at a university in close proximity to Washington, DC, I would probably have better luck finding good Conservative-leaning guest speakers. For instance, the DC-based Heritage Foundation has much different politics from my own, but they are credible, intelligent, and thought-provoking. They currently have an interesting section on their website: “Stop Obamacare Now.”

Since I am about to go on a year-long sabbatical in order to focus on my Skid Road and Soul Stories research and writing projects, I get to put away my health policy teaching materials. Both projects are public scholarship focusing on health policy for homeless and marginalized populations. As such, they are taking me even further away from being an apolitical intellectual. I consider that a good thing, but I do wonder how it will affect my teaching of health policy once I return to the university.

Summer Reading Challenge with a Health Humanities/Social Justice Slant

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Bookshelf at the Green Dragon Inn, Hobbiton

Time for some serious summertime reading. Time to join in on the ‘summer reading challenge’ as posted by one of our PNW writers, Oliver de la Paz (a wonderful poet). He has the full list of reading challenge criteria on his blog post, along with his own summer reading list. And for more ideas, one of my current writing teachers/mentors, Wendy Call, has her summer reading list posted here. My own list is slanted towards topics having to do with health humanities and social justice. I realize they aren’t exactly ‘light’ summertime reading, but what can I say…Here is my current reading list (with the last three books being ‘borrowed’ from his list):

  • The New Jim Crow: Mass Incarceration in the Age of Colorblindness by Michelle Alexander (This is our University of Washington Health Sciences Common Book for academic year 2015/16).
  • The Politics of Aesthetics, by Jacques Ranciere
  • Capital in the 21st Century, by Thomas Piketty
  • The Aesthetics of Resistance, by Peter Weiss
  • Raw Data is an Oxymoron, by Lisa Gitelman
  • On Such a Full Sea, by Chang-rae Lee
  • The Bladerunner (book–not the movie one) by Alan Nouse
  • Intern, by Doctor X (Alan Nouse)
  • Urban Alchemy: Restoring Joy in America’s Sorted-Out Cities, by Mindy Thompson Fullilove (lovely last name!)
  • Just Like Us: The True Story of Four Mexican Girls Coming of Age in America, by Helen Thorpe (currently reading this one)
  • Graphic Medicine Manifesto, by MK Czerwiec, et al.
  • Mirrors: Stories of Almost Everyone, by Eduardo Galeano
  • All the Light We Cannot See, by Anthony Doerr
  • On Looking, by Lia Purpura
  • Rivers of Shadows, by Rebecca Solnit

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.

The Color of Hospitals

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Detail from “The Truth and Nothing But the Truth” mixed media installation, 1989, Gayle Bard. Main lobby of the University of Washington Medical Center.

What is the color of hospitals? For most people it’s that peculiar, putrid-green of hospitals we now associate with the movie One Flew Over the Cuckoo’s Nest and other nightmarish, disorienting places of illness, distress, disease, and death. The fact that Martha Stewart has revived the shade, renaming it ‘Sea Glass Green,’ and making it oh-so-hip-retro mixed with ‘Jadeite’ green, doesn’t make it much better.

I did a bit of historical research into ‘hospital green’ for an essay I am writing called ‘Medical Maze,’ about the disorientation caused by our modern health care system for patients, families, staff, and students. Over my years working and teaching and researching within health care, I had heard rumors now and then that the hospital green had something to do with blood. Turns out, these rumors were correct.

Much of our modern health care system–especially the growth and technological advances within health care–come from wars. Hospital green, originally called ‘spinach green,’  was invented during WWI by the American surgeon Harry Sherman. At the time, most all surfaces of hospitals and clinics were painted white, the color associated with purity and cleanliness. Dr. Sherman, who was busy doing numerous surgeries in St. Luke’s San Francisco hospital, found the contrast of blood against the white sheets and walls and staff uniforms to be too glaring. He couldn’t discern the fine detail of the anatomy of patients necessary for successful surgeries. So, using color theory, he experimented with different colors and in 1914 he came up with the ‘spinach green’ as a complement to blood red. He convinced the hospital to help him create a totally green operating room–walls, sheets, and the surgeon’s uniforms. I imagine though, that the St. Luke’s nurses kept their white hats and uniforms. The ‘spinach’ hospital green quickly spread to other hospitals across North America.

At around the same time, the East Coast-based hospital architect, William Ludlow, also advocated the use of ‘calming green’ within hospitals, as well as other ‘colors of nature’ including “…the glorious golden yellow of sunshine.” (Note, this is not the sickly jaundiced yellow of the hospital and health sciences complex I currently work in.) Reading some of what Ludlow wrote about hospitals, I’ve discovered a strong liking for the man. In an article he wrote in 1918 in The Modern Hospital, he states, “the word ‘hospital’ brings to mind a huge caravanary of austere aspect without and glaring white sterility within, a pile without cheer and without welcome.” He goes on to point out that hospitals at the time were built around the mass casualty wartime hospital model, and thus were not designed with individual health and well-being in mind. The title of his article (and speech before the Twentieth Annual American Hospital Association meeting) was: “In Time of War Prepare for Peace–War Time Psychology Forced Us to Think of Men In Terms of Groups, But it is Individual Soul That Counts In Every Sphere–Including Hospitals.”