Anniversary Edition: Four Years of “The Patient Body”

Artwork by Nathan Green

By Ann Neumann

“But the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness, faith, Meekness, temperance: against such there is no law.” Galatians 5:22

In August of 2013 I wrote to Kali Handelman, the brand-spanking-new editor of The Revealer, to see if she might be interested in a monthly column about all the testy, complicated questions surrounding religion and medicine that riddle the rich folds of our American social fabric.

My pitch was rather loosey-goosey: a placing of two terms in relation to one another, a commitment to question both my definition of those terms and their commonly understood meanings, a mapping of where they overlap and don’t. The title, “The Patient Body,” was both a play on words and an ode to that most dissipated virtue, patience, to endure discomfort without complaint.[1] Suffering in silence doesn’t get many points on my own personal scale, but suffering is —either on a cross or on a hospital gurney— the core of both religion and medicine. With a patient body, our most immediate media, seemed like a sound place to start.

At the time, I was thick into research for a book that explored the intersection of religion and medicine through the lens of end of life care. I couldn’t think of a better format for that book-bound research than a monthly column, with its regular deadlines and enforced thinking-through of entrenched problems—with an astute editor who could poke holes and ask good questions. We have since put out some 45 installments of the “Patient Body” column—altogether practically a book itself. (You can browse the archives here.)

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Religion is the bane and bastion of medical ethics (see “How Ethics Saved the Life of Medicine,” August 2015), the tenets of the application of science to bodily health. Like an appendix, both germane and excessive to the body, religion is the shadow and progenitor of ethical practice in medicine.

Often it is the media coverage of the two that muddies our understanding of their historical interdependence: the court controversies, the ethical conflicts, the tensions between personal and public health. Media’s increasing need to tell stories that outrage, incite and ultimately generate sales (of ads, clicks, or anything, really) reduces any issue to two sides, the more closely matched the better the fight, often characterized as science vs. religion or individual vs. the bureaucracy. No one gets to be a complicated human in these matches; no one gets out alive.

The relationship between religious morality and medical ethics is—and we could argue has always been—narrated by the religious (particularly the most politically visible), the medical professions (the farther from the patient body, the more corporatized). Nuance and subtlety, debate and negotiation, have never been the media’s practice— bet that media legacy, new, subscription, or social. Throw in a heap of our country’s religious illiteracy, add a dollop of “capital T” truth dished out by science and medicine—“we own the facts, we’re curing cancer!”—and you have the perfect recipe for our mediated cultural collision course.

Since I made religion and medicine my beat nearly a decade ago, and since we began The Patient Body, the narrowing and calcifying of mediated opinions have most characterized the national climate. Trump’s election, thanks in large part to evangelicals willing to look past most anything for the sake of an ever more conservative US Supreme Court, confirmed that politics today is about winning, not governing. Even if this had been the case for decades, the cravenness of the Democratic party was exposed; the Republican party’s use of moral purpose as a shield for theft was laid bare.

Even if Trump’s election has made our tone more urgent, The Patient Body’s terrain has consistently been the pitfalls—and pratfalls—of these tensions and stories. The November 2013 column addressed kidney donation and medical equity. The opening of “What’s a Kidney Worth?” reads:

If I pay you $10,000, will you give me a kidney? Just one. You have two and you really only need one; you’re healthy, and while I don’t know you, I think you might have an idea of what to do with an extra ten G. I’ll cover your hospital stay, your operation, your recovery*, all you have to do is… let my surgeon cut into your abdomen and take your kidney. You’ll be saving a life. You’ll be richer. You’ll be giving the ultimate gift.

The column asks us to reconsider the emotionally compelling but ultimately false notion that altruism is an unmitigated good. I argued that the international medical industry was patting its own self-righteous back when it declared that organ donors cannot legally be paid for their kidneys; I factored in the astounding shortage of kidney donors and the elaborately inequitable regimes established to collect organs. It’s a piece of humor and dissection that was easier before Trump’s election shifted medical policy from pragmatic recalibration to outright national triage.

Internal Organ Kidney Heart Lungs Liver c. 1850 Heck antique detailed engraving

Patient autonomy and public health can travel in tandem; most often a patient’s medical decisions are not a threat to society. But in the highly publicized and controversial cases when they don’t agree, I have tried to wade in. The most perfect example of how religion and medicine confound patient autonomy—pitting the soul against its pain—is the battle for legal aid in dying in the US. The very first Patient Body, “An Irresistible Force,” looked at the laws surrounding “assisted suicide” and how they were being used by opponents of aid in dying. I examined a highly charged case where a state’s “assisted suicide” laws, being used to confound patients’ end of life choices, caused unnecessary pain and suffering for one family.

Erring on the side of life is an unquestionable principle, perhaps, until you’re standing where Barbara Mancini was on February 7, 2013, in her father’s home outside Philadelphia, Pennsylvania. Joseph Yourshaw asked his daughter, Barbara, a nurse, to hand him a bottle of morphine. Yourshaw was 93, a war veteran with diabetes, end-stage renal disease, heart disease and the effects of a stroke. She gave him the bottle. He took the morphine.

Mancini was arrested; her defense supported by the largest aid in dying organization in the country, Compassion and Choices. Was Yourshaw’s decision to drink the morphine immoral? Illegal? A danger to his soul? His family? Society? Was Mancini’s simple act a threat to anyone? Ultimately the court ruled that Mancini could go free, but her experience no doubt stifled countless families caught in similar horrors of love and pain.

Mancini’s case is of a genre; pain is one of our most potent political currencies. In September 2016’s “Narratives of Women’s Pain,” I wrote about another aspect of medicine’s regard for suffering: the epidemic of women’s pain in the country today. I started with the story of how Phyllis Schlafy, the Religious Right’s grand doyenne of keeping women in their place, once broke her hip at a talk and continued to smile and thank her hosts even while being carried out on a stretcher. “To be female means to bear pain,” I wrote:

Schlafly wielded pain as a moral cudgel, deployed to maintain the narrow roles of behavior she and her political counterparts interpreted as moral. You venture beyond the hearth, the marriage bed, the modesty of appropriate female clothes, the confines of strict gender-sexual alignment and you are punished.

Our enforcement of women’s subservience has fatal consequences—ones that are too often justified as “natural” or noble. This is evident in recent studies that show doctors—both male and female—blatantly ignore or undertreat women’s pain and suffering, disregarding it as the natural state of women. Citing Jessi Klein’s widely-shared, “Get the Epidural,” essay for the New York Times, I wrote:

Women are never allowed to be their natural selves—without make up, unshaven, uncoiffed—unless they’re giving birth. Then the shaming of selfish women who want medication begins. With such disregard for women’s well being, it can be no wonder that the US maternal mortality rate has doubled since 1990.

Shame is so much a part of living with a female body that it works as its own censure on behavior. Women are ashamed to speak of their own pain. The detriment to public health is obvious: women die in childbirth. For July 2015’s column “Impossible Purity,” I looked at the shaming of sex and how failure to teach and discuss individual rights affects public health. With a cue from Sara Moslener’s excellent Virgin Nation: Sexual Purity and American Adolescence about iterations of the purity movement, I wrote:

Calls for abstinence are as old as the Garden of Eden, and for exactly none of that time have they been broadly heeded. Nevertheless, Christian evangelicals persist in their cultural and political emphasis on sexual abstinence. And that persistence continues to have serious consequences.

Those consequences are unwanted pregnancies, STDs, financial and educational inequality, shaming of sex and those who have it, and an entrenched double standard for boys and girls. Moslener’s book sets up the argument that (female) sexual purity has historically been conflated with our nation’s purity. The politics of religion influence the politics of health in such a way that individual rights are pitted against nationalism, I wrote, quoting Moslener:

Public health is always rife with the politics of moral judgment (exactly what makes this column possible!). Public health regulations are often a telling barometer of our country’s moral compass, from vaccination laws to the legal drinking age. And no public health category is more fraught with moral minefields than sexual health. Right now, our moral compass is set on shaming and inhibiting the lives of young people, particularly women, by setting up and devoting wads of money to an ideal that will never be achieved (not least by a majority of those espousing it). “That is the erotic dream of Christian conservatism: a restoration of chivalry, a cleansing of impurity, a nation without sin, an empire of the personal as political.”

With the Trump administration’s embrace of inequalities—racial, financial, gendered—not as tacit unfortunate challenges but as designed and moral structures, public health (and how we talk about both nationalism and the health of the country when we talk about it) becomes a cudgel aimed at the most vulnerable. In this administration, the most vulnerable are re-characterized as unsafe, immoral and dangerous; they are a threat to the nation’s physical and financial health: dangerous Muslims and Mexicans, grifting welfare recipients, lazy poor people. In a dog-eat-dog world where survival goes to the fittest, it takes a pretty self-assured ideology to carry this kind of warped “moral” weight.

The Martyrdom of Saint Cecilia by Stefano Maderno

 Othering, redefining citizenship, privileging of some rights over others, heightening fears of moral and physical danger or infection: these are the tools of power, political and moral. More often than not, these tools pit the rights of minority groups against a glorious retelling of nationhood. They help shift the definition of morality away from health and care and rights to profit and winning and might. With The Patient Body, my goal is to find the moral truths, to ask who is scapegoated or ignored, to point to what’s at stake.

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Few tasks can be more exciting to a writer than looking back at the accumulation of work diligently amassed over time. As I sat down to mark the passing of our four years by rereading these columns, so many surprised me with their urgency, clarity, and bravery. Much of that freshness is due to Kali’s fine directing, to Angela’s eternal astuteness, and to the history and mission of the Center and The Revealer. Lord, make me a vessel!

There are some true clunkers here too, don’t get me wrong. But the living nature of the column, its unfettered willingness to go into dark corners and to speak up at seemingly inappropriate times has kept the work of the past four years somehow fresh. And—this is an important point—it has continued to engage and motivate me. Not once have I looked across at my Revealer deadline and thought, “what in the world am I going to write about.”

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[1] Unless you’re into literal interpretation: longsuffering and forbearance are often used in place of patience. https://www.biblegateway.com/passage/?search=Galatians+5%3A22-5%3A23

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Past “The Patient Body” columns can be found here.

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Ann Neumann is author of The Good Death: An Exploration of Dying in America (Beacon, 2016) and a visiting scholar at The Center for Religion and Media, NYU.

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Published with support from the Henry R. Luce Initiative on Religion in International Affairs.

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