Ann Neumann is a writer, scholar, and hospice volunteer currently working on a new book about how Americans die, titled Sitting Vigil: In Search of a Good Death. Neumann’s research looks at prisons, hospitals, and other American institutions involved in managing death with the aim of understanding why so many cannot die how they choose or prepare for death in meaningful ways. To this end, Neumann’s work explores death in its most extreme, inaccessible, and unfamiliar forms; she has focused on aid in dying and execution, hospice and force-feeding. But it is the very notion that the hospital and the prison are somehow separate from American life that, Neumann argues, is deceptive. How those in marginalized positions die represents more than a specific injustice—it speaks to how we as a society think of dignity and rights.

Cosmologics had the opportunity to speak with Neumann about her research on death and the politics of dying. Her comments illuminate the wider significance of how a society deals with life at its most fragile and look to the future of American death, specifically end of life care. Her perspective helps us to see not only the centrality of death to American society and politics, but also the need to look to the margins to understand the real consequences of an often unequal and brutal culture of death.

Lewis West for Cosmologics

 

Cosmologics: You write on, among other things, hospice and execution. How has the study of these two radically different ways of death affected your approach to your work? How does the study of one inform study of the other?

Ann Neumann: While researching informed consent—the medical principle that patients should be told all their medical options and possible ramifications when deciding, free of coercion, what treatments they want—I chose to focus on one treatment, feeding tubes. Of course, we usually think of the 2005 case of Terri Schiavo when we think of feeding tubes. The courts ultimately decided that Schiavo, who was in a persistent vegetative state, was being fed against her will. I asked myself where else a person could face this same situation. That query took me to hunger-striking prisoners who are force-fed by court order. I found that force-feedings in Guantanamo were not an anomaly; prisoners are force-fed on US soil all the time. It was the idea that something we usually consider a beneficial treatment was being used as a means of torture that fascinated me, the shifting medical ethics. For more than a year I communicated with a prisoner in Connecticut, William Coleman, who had been on hunger strike longer than any other person in the US. My curiosity about executions and health care in prison was a natural extension of that research. In some cases, the drugs used to execute prisoners are the same used for aid in dying in the states where it is legal. Prisons and health care institutions have proven to be a beneficial juxtaposition in my work.

 

It’s clear that we’re not a secular nation; a particular brand of Christianity dominates our laws, politics, health care, and culture.

 

Cosmologics: How would you describe the relationship of the hospital to the prison? How do the roles of both institutions differ or converge in managing death in America?

Ann Neumann: While hospitals and prisons seem worlds away from each other, they’re really not (think of Foucault’s work, for instance), and I don’t just mean metaphorically. For starters, there are for-profit care providers in many prisons; in others, local universities are contracted to care for prisoners. Sometimes these providers are the very same ones overseeing force-feedings and executions. There are also prison hospice programs rapidly opening across the country.

Comparing and contrasting these two institutional settings has led me to some great thinking, particularly when examining medical interventions. Are prisoners allowed informed consent? Does it look like what we strive for in hospitals and hospices? What medical treatments are futile, meaning they don’t cure and can actually cause a great deal of pain? What treatments are pain-causing and how do we—prisoners, patients, doctors, lawyers, society—determine when the pain (and cost) is worth the chance of benefit? What members of our population do we confine to prison, to hospitals, to long-term care facilities? What can we learn from examining care delivery along these demographic lines? These questions and more are so vital right now: the elder and prison populations are growing rapidly and our health care expenditure is higher than that of any other country in the world.

Cosmologics: Your writing has touched on the role of race and class in dying, end of life care, and the death penalty. Could you speak a little to how race and class can work to shape how people experience death, and conversely, how different types of death could work to shape race and class?

Ann Neumann: During the legislative arguments (and the attending media chaos) to pass the Affordable Care Act (ACA), I wasn’t the only one flummoxed by accusations that government oversight would cause rationing. We already ration care! But because we do so by race and class, legislators are silent about it and the media has largely ignored it. The largest provider of health care in the US is Veterans Affairs, and Catholic hospitals are the second largest provider. The current “scandals” surrounding Veterans Affairs are not lost on those who’ve been watching closely, nor is the Vatican’s strong arm on health care legislation, contraception access, and “religious freedom.” There’s a lot at stake in how we structure health care delivery moving forward: the ACA is only the beginning if we want to remain a financially stable nation and treat our ill and elders with proper care. We’ll be watching the ideological struggles for years to come.

 

It’s hell to be sick, poor, and a minority in this country.

 

Cosmologics: How would you describe the role(s) of religion—defined however you want—in modern, American death, as compared to race and class?

Ann Neumann: I’d rather not define religion, thank you! Besides, the US Supreme Court has been very busy doing that for us lately. But I will say that, when looking at how Americans die, race, class, and religion all play very significant roles in what kind of health care one receives. Whether we die at home or not, how early we are diagnosed, the duration of our treatments, the nature of our medical consent, whether we donate our organs. Even the care options we have access to are determined by whether we’re in a Catholic hospital or not (women of reproductive age and the dying are in the same boat here). Religion, race, and class are not monolithic demographic characteristics; their overlap is fascinating and hard to distinguish. But that challenge is made more difficult by our illiteracy regarding religion, race, and class. Our systems, which institutionalize differences according to these categories, often perpetuate these differences, too.

It’s clear that we’re not a secular nation; a particular brand of Christianity dominates our laws, politics, health care, and culture. But religion is particularly overt around the death bed, and it’s not just family members who resort to religious concepts when they watch a loved one die. It seems that, in our culture, religion often gives us the language we collectively find acceptable when discussing death and dying. I see it when families talk about the nobility of suffering, going to a better place, or praying for miracle cures. By side-stepping science’s absolutes, faith eases us into the grief of someone’s illness or absence. A belief system that affords a better life after death, that grants another authority the weight of decision-making and life-reckoning, is a relief. We say passing. We say gone to a better place. Belief can ameliorate horrible pain and can aid even those families that before exhibited only remote attachments to such systems.

Cosmologics: The recent “botched executions” seem to have reinvigorated the discussion over state execution and death penalty abolition. But what do you see the future holding for end of life care? What do you hope the future holds for end of life care?

Ann Neumann: Prisoners and patients each suffer their own forms of incarceration and discrimination. The horrors of lethal injection are finally coming out: we no longer see it as the clinical, painless execution method it’s been billed as, but as a chillingly painful and arbitrary practice that’s predominantly used in the South. Patients, particularly elders, are often institutionalized in hospitals or elder care facilities, their savings depleted, their end years desperately lonely. It’s hell to be sick, poor, and a minority in this country.

I guess the one thing that ties your question together—the futures of the death penalty and of end of life care—is how we discuss dignity. Much like our definition of human rights, the definition of dignity is constantly evolving. Dignity can be used as a bludgeon to take away rights (the “dignity” of an unborn child, say), or it can mean something essential, inherent to a human’s being. But a human can also be without dignity or can be treated without dignity. If we’re going to “fix” the death penalty, if we’re going to fix health care, we’re going to have to think about how important dignity really is to our culture, what it means, and who gets to have it. How does dignity prescribe our legal and institutional treatment of others?

Right now, we’re getting a lot wrong. Force-feedings at Guantanamo, religious exemptions for corporations and universities. Prisons and health care institutions that are rapidly corporatizing—look at the boom of for-profit hospices and for-profit prison health care providers. I’d like to see a broader, more substantive public discussion about, well, the meaning of death, and by extension, the meaning of health.

I had hoped that the legalization of marijuana would force us to think about why I have to score weed on the street for my hospice patient while (black) kids are moldering in prison for possession. What differentiates the suffering of my patient and a prisoner? Why is pain relief for one being used to destroy the life of another? How do our ideas of dignified treatment differ across racial and class lines? And also this: why are some forms of pain legitimate and others not? I still have hopes for the public conversation surrounding the growing movement to legalize aid in dying. Choice language has been applied to women’s reproductive rights for nearly fifty years. With the aid in dying movement reaching public consciousness across the country, we have a chance to incorporate male bodies into the choice conversation, which, at long last, may finally give the idea of medical choice more authority. I hope too that fresh ideas about the role of community in medical decisions, our obligation to address systemic pain and suffering where we can (in the hospital, the prison, the projects, and on and on) will be more broadly recognized and discussed. We desperately need a sober national conversation about dignity in our communities and to examine the pain that systems can inflict.


Ann Neumann is a visiting scholar at The Center for Religion and Media at New York University and a contributing editor to its publication, The Revealer, where she writes the monthly column, “The Patient Body,” about issues at the intersection of religion and medicine. Neumann is also contributing nonfiction editor for Guernica and has written for The New York Times, Bookforum, New York Law Review, Guernica, Lapham’s Quarterly, and The Nation. Her book about how Americans die will be published by Beacon Press in 2015.

Lewis West is co-editor-in-chief of Cosmologics.

 

Image from Flickr via Thomas Hawk

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