High Art, High Medicine, High Lead

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Woman looking at art, Cleveland Museum of Art. Photo credit: Josephine Ensign/2016

Cleveland: the city of high art, high medicine, and high lead levels. Home of the amazing Cleveland Museum of Art, with its recent $350 million renovation, including a glass-enclosed atrium, the city’s largest free public space (at 39,000 square feet).

I spent the past week living in Cleveland, Ohio, in a hotel next to the Cleveland Clinic Hospital, one of our country’s premier high-end, high-tech medical complexes. It is, of course, a private health care entity. The last time I visited the Cleveland Clinic was in 1979 when I was a (blessedly only briefly) ‘cardiac patient,’ referred there by my Oberlin College clinic physician for a bothersome heart rhythm problem–probably precipitated by too much caffeine and studying of medical ethics. I remember being inside a dark brick building, and if the clinic space back then had any artwork to speak of, I certainly don’t remember it.

A few days ago, touring the art collection in the main Cleveland Clinic Hospital and guided by one of their art program curators, I was struck by how much of it is cold, clinical, and high-tech–matching, I was told, the overall branding image of the hospital system. I was standing inside the hospital space where surgeons recently had performed the first U.S.-based uterus transplant (significantly, I believe, in a married, Christian white woman and mother of adopted sons). Here are a few examples of the hospital’s prickly artwork:IMG_6708

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‘The Ineffable Gardener and the Developed Seed” 2013, Stainless steel modules, by Lois Cacchini.
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Untitled (Rooftop View) oil on masonite, 1957, by Hughie Lee-Smith. Cleveland Art Museum. 

Cleveland is part of the Rust Belt now, and the town’s numerous boarded-up, crumbling factory buildings and houses are testament to the city’s economic decline. Cleveland is a city of 389,524 residents, the vast majority are African-American, and 39.2 of all residents live in poverty (the median household income is $24,701). Not surprisingly, the health care sector is Cleveland’s largest employer, with the arts also being a leading industry. (Source: Data USA from the MIT Media Lab–a great source of up-to-date and easy-to-use data visualization based on US government databases.)

When I checked into the Cleveland hotel at the start of my health humanities conference, a middle-aged white man from Germany was carrying a large container of bottled water. When I asked him about it he told me he’d read that Cleveland’s water supply was not safe and contained high lead levels, so he was buying his own water. He also told me he had flown in to be treated at the Cleveland Clinic.

Indeed, Cleveland has one of our nation’s worst problems with lead ‘poisoning’ but mainly from lead paint in deteriorating inner-city housing. The Cleveland neighborhood of Glenville, only blocks north of the Cleveland Clinic, had a 2014 study of lead levels in children under age 6 showing that 26.5% had levels exceeding the current CDC threshold of 5 micrograms per deciliter. (Source: NYT article “Flint is in the news, but lead poisoning is even worse in Cleveland” by Michael Wines, March 3, 2016.)  Lead, as we know quite well by now, at any level is a brain poison that permanently decreases IQ and interferes with a person’s ability to control impulses. A different spin on the “No Child Left Behind Act.”

This photograph, taken from the top floor of the Cleveland Clinic Hospital and looking north towards Lake Erie, shows the downtown skyline to the left, and to the right (the darker, low-lying area) is the Glenville neighborhood. As I stood gazing at the Cleveland skyline from atop this very antiseptic and removed private hospital, I couldn’t help but wonder how anyone can possibly believe in trickle-down economics. To me it is the ultimate of self-serving delusions. IMG_6715

Down and Out in L.A.

IMG_6660Los Angeles, what with its population of over 40,000 people who are homeless and with the nation’s largest concentration of chronic homelessness, is an interesting (and distressing) city to live in. Or to visit. Unless you limit yourself to staying within the sanitized realms of either Disneyland or La-la Hollywood-land.

I was in downtown L.A. for four days recently to attend a national writers conference, but also to see if I could get some sort of context to the problem of homelessness in this giant car-centric sprawl of city–a city like no other. Not being from Los Angeles, it is difficult to decipher what is real and what is just another stage set. Where else would Don Draper (Jon Hamm) of Mad Men saunter through a writers conference and serve as guest editor for a literary magazine’s special edition on advertising writing? (Yes, this really happened, and yes, he is even more handsome in person.) And where else would car crash scenes complete with dazed people staggering around with bloody heads happen right outside one’s hotel? (Yes, this really happened as I was trying to walk from my hotel to an art museum–I almost stepped in to help out with the human carnage before I realized it was actually a stage set.)

On my first day in L.A. I noticed these curious ‘private property’ bronze plaques all over the sidewalks. They basically say, “Move along all you tempest-tossed tired and homeless. Move along. You don’t belong here.”

 

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And these homeless- deterring benches at bus stops. Although–look closely–this one comes with its own food pantry. A man pushing a shopping cart nearby who stopped to inspect these cans told me that people drop off food for the homeless and that cans of vegetables don’t get picked up very quickly. He happens to like vegetables and took all the cans.IMG_6614 I had arranged to do a site visit at the Homeless Health Care Los AngelesCenter for Harm Reduction in the heart of Skid Row in downtown Los Angeles. The director, Mark Casanova, graciously gave me a tour of the facility and talked with me about their work. I’ve visited the Insite safe injection center in Vancouver, BC, so I thought I knew what to expect. Insite is North America’s first and only legally-sanctioned safe injection site and syringe (‘needle’) exchange, although several cities in the U.S.–including my hometown of Seattle–are considering opening one to help address the current heroin epidemic. (See Seattle Times article, “Heroin, cocaine users in Seattle may get country’s first safe-use site,’ by Daniel Beekman, April 4, 2016 for more information.)

 

IMG_6656Visiting the L.A. Center for Harm Reduction with Casanova while it was in operation was an eye-opening experience for me even though I have long been ‘sold’ on the concept and practice of harm reduction: treat people in a non-judgemental and respectful manner and work beside them to find ways to minimize harm to themselves and to other people. From a public health perspective we know that this approach works to save lives and protect everyone’s health.

The eye-opening part was mainly the sheer scale of the need for services such as those provided by the Center for Harm Reduction. They have a syringe exchange that must be one of the largest in North America in terms of quantity of ‘needles’ exchanged. They serve an average of 145 people per day. They also have an on-site wound care clinic and soon will add an on-site drug treatment program. And they have a very successful overdose prevention program where they train clients in the proper use of Naloxone (also known as ‘Narcan’), a non-addicting prescription drug that temporarily blocks and reverses the effects of opioids (prescription opioid pain medications, as well as heroin). Naloxone is available in either an injectable form or a nasal spray. So far, the Center for Harm Reduction, through their own on-site staff and through their street-based program, have prevented over 400 overdose deaths. Here is a photo of the current map showing their overdose reversals. Remember, one of these lives saved could have been your daughter, son, friend, etc.

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Notice the sign in the photo below, asking clients to report police harassment, especially in terms of confiscation of either their syringes or Naloxone/Narcan. Los Angeles has a problem with criminalizing homelessness. Not just with bizarre ‘Private Property’ bronze sidewalk signs and with arrests for and confiscation of drug paraphernalia,  but also with a limitation on the ‘size’ of homeless rough sleepers’ personal belongings. The day before I toured the Center for Harm Reduction, L.A. City Council had just passed a resolution limiting the rough sleepers to whatever personal items (including tents, blankets, sleeping bags, clothing, and food) to what can fit into a 60 gallon container. They say the rest will be confiscated and destroyed. IMG_6618

On a much happier, up with people note, I was impressed by the fact that the Center for Harm Reduction has a companion Healing, Arts and Wellness program next door where they provide space for arts and writing programs, karaoke, a lending library, yoga, acupuncture and cranio-sacral treatment, Zumba fitness classes, and life-skills training. Here are some of my photographs of this very health-promoting space and artwork by participants. Thank you Mark Casanova and all the wonderful staff of Homeless Health Care Los Angeles for all the important work you do.

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Home is…

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Community blue tarp tapestry/ Soul Stories project. Photo credit: Josephine Ensign, 2016

Home-less-ness. Un-homed. Being without “a fixed, regular, and adequate nighttime residence.” 

Where did you sleep last night? Was it in a warm, dry, and safe place?

If you were asked to summarize the essential meaning of home to you in one word or in a brief phrase, what would it be?

As human beings we have to have rest–and sleep–in order to not only thrive, but survive. Sleep is the ultimate letting go and trusting that we will not be disturbed, that we will be okay until we awaken. The trust we have through undisturbed sleep generates hope.

What does it mean to be homeless when home was never a safe place? In such cases, it is not possible for young people to ‘runaway’ from home; they can only run towards home.

Housing, ‘home-ing,’ is a form of health care. The people at the National Health Care for the Homeless Council summarize this connection with the following:

  • “Poor health (illness, injury and/or disability) can cause homelessness when people have insufficient income to afford housing. This may be the result of being unable to work or becoming bankrupted by medical bills.
  • Living on the street or in homeless shelters exacerbates existing health problems and causes new ones. Chronic diseases, such as hypertension, asthma, diabetes, mental health problems and other ongoing conditions, are difficult to manage under stressful circumstances and may worsen. Acute problems such as infections, injuries, and pneumonia are difficult to heal when there is no place to rest and recuperate.
  • Living on the street or in shelters also brings the risk of communicable disease (such as STDs or TB) and violence (physical, sexual, and mental) because of crowded living conditions and the lack of privacy or security. Medications to manage health conditions are often stolen, lost, or compromised due to rain, heat, or other factors.”

For those of us fortunate enough to be currently housed and ‘homed’ in a ‘fixed, regular, and adequate [and safe] nighttime residence’–for those of us who are able to have adequate, safe, undisturbed, restorative-of-hope sleep–let us all remember (or imagine if we’ve never experienced it) what it is like for people who go without these essential human needs. And let us use our rest, our trust, our hope to fix this ‘wicked problem’ of homelessness.

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Notes:

  • The blue tarp tapestry shown in this photo is from my Soul Stories project, and specifically from the ‘Way Out; Way Home’ installation art (in progress). I ask people who view/participate in this installation to contemplate the meaning of home for them. They then are invited to write or draw the word or phase on a strip of paper, the strips are then added to the blue trap tapestry wallhanging weaving.
  • The connection between sleep and trust and hope was inspired by my current research for the Soul Stories project on the role of narrative in health and healing in the context of homeless. Specifically, this concept comes from anthropologist Hirokazu Miyazaki’s essay/chapter, “Hope in the Gift–Hope in Sleep” in Anthropology and Philosophy: Dialogues in Trust and Hope, edited by Sune Liisberg, Esther Oluffa Pedersen, and Anne Line Dalsgard, (New York: Berghahn Books, 2015).
  • I want to acknowledge the generous support of the University of Washington Simpson Center for the Humanities and the National Endowment for the Humanities for funding support for my Soul Stories public scholarship digital humanities project.

Crack Houses and Mass Incarceration

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Rooming house in Jackson Ward, Richmond, Virginia. Photo credit: Josephine Ensign/1988

The deeply disturbing underbelly of the American life many of us have the mixed-blessing privilege of not having to confront: the racist premises of and fallout from our War on Drugs.

The War on Drugs was begun by President Reagan in 1982, and was continued by both Bush administrations, as well as by President Clinton in between the two Bush presidencies. Remember all the crack houses, crack babies, crack crimes, and Welfare Queens that were invoked to stoke the fervor and the funding for the War on Drugs?

As Michelle Alexander points out in her excellent book The New Jim Crow: Mass Incarceration in the Age of Colorblindness (The New Press, 2011), President Reagan began the War on Drugs before crack cocaine was introduced into impoverished, mainly African American inner-city neighborhoods as a ‘cheap high’ substitute for the high-priced White Collar cocaine. All of the ensuing efforts to get ‘tough on crime’ and ‘one strike–you’re out’ have resulted in the U.S. now having highest rate of incarceration in the world. We also have the highest proportion of our racial and ethnic minorities incarcerated. In fact, we have a larger percentage of our black population imprisoned than did South Africa under the height of Apartheid.

The War on Drugs hasn’t made us any safer, as various politicians have tried to make us believe over the past thirty years. It has made us sicker in body, mind, and soul–all of us. It has contributed to a worsening of health inequities since incarceration leads to a never-ending system of debt, to permanent disenfranchisement by taking away people’s voting rights, and of making it almost impossible for people to find jobs and housing once they are released from prison. Not to mention the negative health effects of incarceration on families. I have worked in prisons and in juvenile detention and knew about many of these issues. But I had not really thought of it as a continuation of slavery, Black Codes/ Jim Crow until I read this book and participated in a University of Washington Teach-In on the topic last week.

Here is one of the more piercing passages of Alexander’s book:

“When the system of mass incarceration collapses (and if history is any guide, it will), historians will undoubtedly look back and marvel that such an extraordinarily comprehensive system of racialized social control existed in the United States. How fascinating, they will likely say, that a drug war was waged almost exclusively against poor people of color–people already trapped in ghettos that lacked jobs and decent schools. They were rounded up by the millions, packed away in prisons, and when released, they were stigmatized for life, denied the right to vote, and ushered into a world of discrimination. Legally barred from employment, housing, and welfare benefits–and saddled with thousands of dollars of debt–these people were shamed and condemned for failing to hold together their families.” p175.

And for an excellent recent report on the public health effects of mass incarceration, take at look at the Vera Institute for Justice’s “On Life Support: Public Health in the Age of Mass Incarceration.

At the end of one of the Teach-In sessions “No Sanctuary: Understanding Historical and Contemporary Intersections of Mass Incarceration, Racism, and Health,” Dr. Alexes Harris stated, “The U.S. has always had an insidious system of social control targeted at those who are racialized and poor,” and then she asked each of us audience members, “How do you perpetuate this system?” On this Presidents Day, what an excellent question to ask ourselves.

Red Blanket Patients

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Very Important Patient red blanket. Photo credit: Josephine Ensign/2016

Although one of our country’s founding principles centers on equality, we know that has always been a lofty goal, and one that conflicts with our real guiding principle of rugged individualism combined with economic competition.

Money talks. Money yells. Money gets you red blanket treatment in many of our country’s hospitals. I’m sure the ‘real’ red patient blankets are much prettier than the swatch of one I knitted and embroidered for this photo, but they do exist both literally and metaphorically–and historically. Red blanket treatment’ of patients has historical roots in pre-WWII emergency medicine practice: a red blanket was placed over a patient triaged as needing rapid transfer to a place of higher-level treatment and attention. Presumably, this older type of ‘red blanket treatment’ was done based primarily on medical need and not on patient socio-economic status.

A different version of ‘red blanket’ VIP (Very Important Patient) hospital practices seems to be proliferating. ‘In the NYT Op-ed article “How Hospitals Coddle the Rich” (October 26, 2015), by Shoa Clarke, a physician currently doing his residency at Brigham and Women’s and Boston Children’s hospitals, writes of his experience during medical school (at an unnamed but readily identifiable hospital in California–as in Stanford) of being introduced to the concept of tiered care in hospitals where hospital administrators draped wealthy patients in scarlet blankets to help ensure they got better care. “This is a red blanket patient,” one of his supervising physicians reportedly said. Such red blanket patients are fast-tracked and given preferential treatment based solely on their wealth and status.

In a follow-up post related to this topic on KevinMD, a dermatology resident physician and medical school classmate of Clarke’s, Joyce Park, contends that she has never seen red blanket VIP patients getting better hospital care than other patients. In her very telling statement, “I have not seen this happen, from the level of nursing all the way up to the attending physicians” she manages to sum up the worst of hospital hierarchy-think and to come across as impossibly naive. (“The Problem with VIPs in the Hospital”, November 15, 2015.) Of course VIP patients get better hospital care, at least in terms of an increase in prompt nursing attention (and probably much lower RN to patient staff ratios), as well as more ‘discretionary’ medical and surgical interventions.

What’s ironic with this equation is that while the improved nursing care translates to improved patient outcomes, an increase in medical surgical interventions typically translates to worse patient outcomes. When nurses go on strike, hospital patient mortality increases; when doctors and surgeons go on strike, hospital patient mortality decreases or stays the same. (See the recent multi-country research study results reported in the British Medical Journal, “What are the consequences when doctors strike?” by Metcalfe, Chowdhury, and Salim. November 25, 2015/ and “Evidence on the effects of nurses’ strikes” by Sarah Wright in The National Bureau of Economic Research.)

The reason for this difference most likely lies in the fact that more medical and surgical care does not mean better health care or better objective health outcomes. As reported in a 2012 Archives of Internal Medicine article, “The Cost of Satisfaction,” (by Fenton, Jerant, Bertakis, and Frank) a study using a nationally representative sample found that higher patient satisfaction (with physicians) was associated with increased inpatient utilization and with increased health care expenditures overall and for prescription drugs. Patients with the highest degree of satisfaction had significantly greater mortality risk. The researchers postulate that patients with more clout who can cajole their physicians into giving them more medications and more discretionary medical-surgical interventions may be more satisfied with their care by physicians, but are also more likely to die from iatrogenic causes.

Perhaps–even if you can afford VIP/concierge/red blanket patient care–you should think twice about what you are really buying. And perhaps as a country we should think about where we’re headed with such an increasingly stratified healthcare system.

Prostitution: The Oldest Oppression

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Gloria Steinem/Sponsored by Hedgebrook at Seattle’s Benaroya Hall, 11-8-15. Photo credit: Josephine Ensign/2015

Gloria Steinem reminds us that prostitution is not the oldest profession for women, but rather it is the oldest oppression of women. This is not just some catchy, smart play on words by a feminist icon. It contains powerful truths. It contains powerful truths that affect public health and policy. It contains powerful truths that affect all of us, even if we prefer to think that it doesn’t.

I’m writing this post the morning after TV actor Charlie Sheen publicly announced he is HIV positive, and linked his infection to his history of alcohol/drug use combined with his ‘use’ of prostitutes. (See NYT article “Charlie Sheen says he has HIV and has paid millions to keep it secret,” by Emily Steel, 11-17-15.) Considering the fact that ‘use’ of female prostitutes by heterosexual men is correlated with high scores for men on different masculine hostility measures, it strikes me as ironic that Sheen’s last–and now cancelled– TV series was titled Anger Management.

Hopefully, most people know that prostitution is not the twisted Cinderella Hollywood version Julia Roberts portrays in the movie Pretty Woman. But Pretty Woman was written and directed by two fairly macho men, and it was released in the dark ages of 1990. Surely the portrayal of prostitution is much improved today. But no. Even the women’s rights advocate, TV screenwriter and producer Shonda Rhimes, is woefully disappointing on this issue. I recently watched the first season of Scandal (which Rhimes wrote and produced) in which the main character–the professional ‘fixer’ played admirably by Kerry Washington–puts on her white hat/gladiator woman power suit and successfully defends a Washington, DC high-class escort/prostitution madame, allowing her to retire as a rich grandmother in Boca Raton, Florida.

In my thirty-plus years work as a nurse, I have worked with many young women involved in prostitution. I was always clear that it was sexual exploitation for underage girls, but within the progressive subculture of clinics/agencies I worked in, we called adult prostitution ‘sex work,’ and erred on the side of harm reduction: trying to help minimize the harms of prostitution to the patient and the public. In many ways–as I view it now–we were supporting their lifestyle, enabling it, and becoming part of the problem. I remain a strong advocate of harm reduction, especially as it pertains to drug/alcohol addiction, but not applied to prostitution.

I know prostitutes who call it a profession, who say they freely choose their work. I’d like to believe them because it would make my work easier. But so many prostitutes (female, male, transgender) have histories of previous sexual abuse as children. Their bodies are not their own; their bodies have been stolen from them. In such situations free choice is not possible. This, combined with the growing evidence that prostitution–even in countries where it is legal and regulated (including health screens/care)–is one of the most hazardous ‘jobs’ in the world, has led me to the conclusion that prostitution is the oldest form of oppression. Prostitution is part of violence against women.

So, what to do about it? In my hometown of Seattle, we have begun to adopt the ‘Nordic Model’ of intervention: decriminalizing (and diverting to supportive care, including housing, health care, counseling, job training) prostitution for the women/transgender people involved, and stepping up criminalization efforts directed towards the customers–or ‘Johns’–and the pimps/BackPages/brokers in whatever forms they take. And along with stepping up legal ramifications for the buyers and the brokers, Seattle has innovative programs, such as OPS: The Organization for Prostitution Survivors. OPS has a drop-in center for women, survivor support groups, art workshops for survivors, as well as community-based service provider trainings, and the new Stopping Sexual Exploitation: A Program for Men (SSE).

Last week I visited OPS and talked with OPS co-founder (with survivor/activist Noel Gomez) Peter Qualliotine. Peter has taken the lead in designing and facilitating the SSE workshops. He explained that the SSE program was designed and piloted for two years and then began full operation in January 2015. He receives self-referrals as well as court referrals, and he’s hoping to be able to move it more heavily towards referrals. As he put it “8,000 men a day in King County are customers on BackPage,” so waiting for men to be ‘caught’ by either their wives/partners or the police and referred in to a ‘John’s School’ such as SSE, will not be very effective.

The SSE consists of a telephone intake conversation that Peter has with the men. He uses a motivational interviewing technique and asks the men, “How has this been a challenging time for you?” He said that with the rare exception of a man with psychopathic tendencies (my term here), the vast majority of men soliciting sex feel at least some qualms about it and also suffer negative consequences (sexually transmitted infections, guilt, relationship/legal/money issues).

The SSE program is based on the social-ecological model of violence prevention, and includes information and role-play on gender socialization and manhood training. It’s a support group model of three hour sessions over eight weeks, and is purposefully limited to ten men at a time. So far this year they have had sixty men complete the program, with some of the men so positively affected/changed by it that they have volunteered to help with further advocacy. (Stay tuned, because local and national news coverage on SSE is coming soon.)

Meanwhile, I know many people who work within public health realms in Seattle/King County who continue to advocate for legalizing prostitution, as if it is similar to ‘legalizing’ marijuana. And the otherwise admirable social justice/human rights organization, Amnesty International, is also advocating this stance–although they cleverly call it “protecting the human rights of sex workers.”

Creating Change

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Part of the timeline of slavery, racism and related issues. On the wall at entrance to UW Hogness Auditorium for the Health Sciences Service-Learning and Advocacy/Common Book Kick-off event, 10-6-15.

This past week at the University of Washington Health Sciences Common Book kick-off event, I heard a moving speech by Benjamin Danielson, MD. Dr. Danielson is Medical Director at Odessa Brown Children’s Clinic, a Seattle Children’s community-based clinic in Seattle’s Central District, an area which because of ‘redlining’/racial segregation in Seattle’s history, had been a predominantly black neighborhood. (see the excellent short video “A Really Nice Place to Live” by Shaun Scott). Odessa Brown is co-located in a building with its sister clinic, Carolyn Downs Family Medical Center, a clinic I worked at for five or six years. I had the pleasure of working with Dr. Danielson while coordinating care for a teen with sickle-cell anemia, and I know first-hand what an exquisitely competent and compassionate physician he is. But this week was the first time I’d witnessed his powerful public speaking abilities.

Our UW Health Sciences Common Book this year is Michelle Alexander’s The New Jim Crow: Mass Incarceration in the Time of Colorblindness (The New Press, 2010). This is the fourth year we have had a UW Health Sciences Common Book, with interprofessional activities based on the book’s theme interspersed throughout the academic year. Previous books have been Anne Fadiman’s The Spirit Catches You and You Fall Down (a classic if not a bit ‘overdone’ by now), Gabor Mate’s In the Realm of the Hungry Ghosts: Close Encounters with Addiction (great topic but his book is in need of heavy editing–he rambles), and last year’s book was Seth Holmes’ Fresh Fruit, Broken Bodies: Migrant Farmworkers in the United States (great topic but read like a doctoral dissertation–which it was). The New Jim Crow is written in an accessible, non-academic and powerful style, and is, of course, on a painfully current topic in the U.S. and one pertinent to health care inequities: racism.

Dr. Danielson started his talk by acknowledging the history of the Central District where he works, and the ‘strong black women,’ of the neighborhood’s past, Odessa Brown and Carolyn Downs, for whom the two community clinics are named after. Both women advocated for quality and accessible health care for their communities. Odessa Brown, who had experienced racial discrimination in accessing health care, was active in starting a children’s clinic in the Central District before she died at age 49 of leukemia. Kudos to the Odessa Brown Children’s Clinic for including information on Odessa Brown (the woman) on their front webpage, in ‘Our History,’ right under ‘Our Mission.’

Carolyn Downs was part of the Seattle Black Panther movement, who with the financial help from people like Jimi Hendrix and James Brown (both from the Central District), in 1968 opened what was then the first health clinic in the community. Less of her history is included on the webpage for the clinic, but I know from having worked there and taking care of the daughter and granddaughter of Carolyn Downs, that she died young of breast cancer–and at least partially because of disparities in access to breast cancer screening and treatment.

I provide some of the history of both Odessa Brown and Carolyn Downs because I admire the work they did during their too-short lives, and because–as Dr. Danielson said in his speech–this can become another example of “black people being deleted from history.”

What to do about the continued, pervasive, and destructive problem of racism in our society, including in our institutions ranging from prisons to hospitals and clinics? The main message from Dr. Danielson and Michelle Alexander (through her book) is that it will take both individual and collective action for us (for the U.S.) to create positive change. During his talk, Dr. Danielson spoke of using the companion community organizing guide to The New Jim Crow, titled Building a Movement to End the New Jim Crow: An Organizing Guide by Daniel Hunter (Veterans of Hope Project, 2015).

In chapter one of this guide, “Roles in Movement-Building,” Hunter references the terminology used by Bill Moyer in his book Doing Democracy: The MAP Model for Organizing Social Movements (New Society Publishers, 2001) This work divides people’s roles into four main groups: 1) Helpers–direct service providers, 2) Advocates-who work to make systems work better for those in need, 3) Organizers–who bring people together to change systems, and 4) Rebels–who speak truth to power and agitate for radical change. The key is to recognize our own strengths and roles–where we are most comfortable working– but also to see the value in the rage of roles played by different people, because an effective social change movement requires people working in all of these roles.

This is similar to the “Bridging the Gap Between Service, Activism, and Politics” group activity from the Bonner training curriculum that I have used for many years when teaching community health. But (of course!) I like the addition of the category ‘Rebels’ to the mix and plan to add that the next time I use this in teaching.

On a very sobering (as if we weren’t already very sober) note, Dr. Danielson ended his talk Tuesday night by adding that for all the good work and innovative community outreach programs of the Odessa Brown Clinic, he often asks himself if they aren’t keeping children healthy enough that they too can end up in our country’s prison system.

In Boom or Bust: Standing in Solidarity

Version 2Seattle is a boom or bust town. Boom times: The timber/logging industry of its early days. The jumping off point for people drawn to the Klondike Gold Rush in the Yukon. The Boeing surge during WWII. And, since the 1990s and accelerating over the past four or so years, the technology boom with Microsoft and now Amazon leading the way. The bust times in between, including the Boeing Bust of the early 1970s, spurring the famous billboard near the Sea-Tac airport reading, “Will the last person leaving Seattle turn out the lights.”

Since its early days Seattle has been a socially progressive place. King County, which includes the City of Seattle, was formed by the Oregon Territorial legislature in 1852. From the beginning, the King County Commissioners were responsible for such things as constructing and maintaining public buildings, collecting taxes, and supporting ‘indigents, paupers, ill, insane, and homeless people living in the county.’ Today, while there is a robust safety net in our community, it is not strong enough. Homelessness in the Seattle area is increasing, with tent cities sprouting up wherever they can, including along the original Skid Road (Yesler Way) in the shadows of Harborview Medical Center as shown in this photo taken late last fall.

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Homeless encampment near Harborview in downtown Seattle. Photo credit: Josephine Ensign/2014.

As the bumperstickers at the beginning of this post proclaim: Healthcare is a human right; housing is health care. They were produced by the National Health Care for the Homeless Council, of which I am a member. The Council recently issued this timely and hopefully provocative-in-a-good way justice statement entitled Standing in Solidarity: In Support of the Movement for Social Justice. It reads:

“The National Health Care for the Homeless Council recognizes that the significant health disparities associated with homelessness are part of a much larger pattern of injustice in the United States. Poverty and structural racism too often are perpetuated and upheld by poor public policies and narrow social opinion, leaving millions of men, women, children, and youth unable to achieve their potential for well-being and success. We stand in solidarity with the growing social movements and supportive jurisdictions that seek to correct underlying social and economic inequities. We understand that our work as health care providers is part of a much larger struggle to attain human and civil rights, to include the rights to housing and health care.

Numerous recent events involving police violence and community responses have reawakened the national consciousness around the failures of our public systems. Rather than focusing on sensationalized moments and ignoring the daily traumatic violence experienced by those living in poverty, we ask that media outlets instead continue to highlight the root causes of these incidents—social disinvestment, racism, and the ongoing, profound inequities in opportunities, as evidenced by the following:

Public policies created current conditions, but the policy-making process can also promote a robust and inclusive society. We call for measures to establish for everyone in our country the rights to health care, housing, and livable incomes. We also call for those in the Health Care for the Homeless community—and others allied with this cause—to continue our work toward public policies that achieve social justice.”

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.

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.