“There is no good death, I now know. It always hurts, both the dying and the left behind. But there is a good enough death.” — Ann Neumann, The Good Death: An Exploration of Dying in America, Beacon Press, 2016
In July of 2013, Kali Handelman became the third editor of The Revealer, a publication of The Center for Religion and Media, that has been running in some form or another since its founding by journalist and author Jeff Sharlet in 2003. Ann Neumann, the publication’s second editor, stepped down in 2013 to complete a book. But completely leaving The Revealer proved too hard to do. Neumann soon pitched a column to Handelman that became “The Patient Body,” a monthly plumbing of the murky grey areas between the disciplines of religion and medicine that has been published continuously since October 2013.
Every writer-editor interaction is collaborative. For the writer, the hope is that the editor will find the argumentative holes, unclear ideas, and clumsy language that escaped them in the writing process. For the editor, the hope is that the writer will bring new ways of looking at issues, old or new, something fresh and provocative—or at least compelling. Our work on this column has been fulfilling and instructive for both of us.
The first installment of “The Patient Body” jumped right into the fray with an examination of a case that ended in the arrest of a distraught daughter who had handed her dying father a bottle of morphine. Subsequent columns have continued to examine nuanced and controversial issues. But it is the dynamic between editor and author that makes “The Patient Body” exciting. “I feel like we have such a wide-ranging, ongoing conversation through your columns,” Handelman wrote when considering the possibility of sharing in a dialogue for this installment of the column. We decided that, on the occasion of the publication of Neumann’s first book, The Good Death: An Exploration of Dying in America — the writing of which unfolded as Neumann and Handelman worked through “The Patient Body” episodes each month — it was only fitting to invite you, our readers, into that conversation. They spoke via email about working together, the writer-editor relationship, and the religious, ethical and moral issues the column has taken up over the years.
Kali Handelman: Let’s start with bodily autonomy. You do such a brilliant job of not only presenting but explaining what’s at stake in stories about how peoples’ decision-making rights regarding their bodies are limited by law, medicine, and religion. For instance, linking issues around the right to die and reproductive rights. You’re especially adept at the kind of intersectional thinking and reporting that brings issues of gender, race, and class into play when discussing these issues. Can you tell me more about how you came to see the connections here? Perhaps, because it’s The Revealer, especially religion?
Ann Neumann: I had a journalist friend remind me recently that knowing too much of the details of an issue can inhibit the writing, make it dull and flat, which I think is very true. A writer can get caught up in the detail and nuance and forget about the writing or the narrative. Because I’m not an academic and because I cut my teeth late and, for the most part, while editing The Revealer, I’m really lucky to have fallen into a kind of pidgin theory.
Where I’m best, perhaps, is when I can write from the experience of being in a room with people—which means close to bodies, and with an understanding of how vulnerable some bodies really are. But when I do bring a column to you that feels thin, all emotion or scene without substance, you refuse to let me get away with it!
Almost every time I send you a first draft I’m doing the strident equivalent of shaking my fist at something that perplexes or puzzles me. You, as a good editor, hold me still and make me write clearly what I mean. You make me do the work. To apply theory and language to an emotion. And I think that’s what’s so unique and productive to our editorial process. It’s a great bridge of journalistic and academic approaches to a problem, a thought, a question.
As a hospice volunteer, I began noticing who was in hospice, how long they had been enrolled, who was caring for them (in cash-paid jobs, with no sick days or security), who had access to dental care and preventative medicine. And then I was assigned a hospice patient who had been a doctor. The differences in how patients encountered their end of life experiences was stark and something I couldn’t ignore.
Religion and ritual are always present in conversations about bodily health and rights. And even choice of what faith practices to abide by can be coerced. It’s been so enlightening to ask people how they interpret their faith and to compare that to their faith’s teachings. We always pick and choose what behaviors we are willing to enact. I’m a Catholic who goes to Mass once a year, for instance. My last patient was agnostic but found incredible solace in her conversations with a Universal Unitarian minister who visited once a week. Everyone I’ve ever met who was facing down an imminent death questioned what they knew about belief. It’s humbling, then, to raise a fist in support of one cosmology, when you realize that we all have unique end of life needs and questions.
Yet, our public conversations about faith continue to collapse whole spectrums of ritual and faith under grossly inadequate headings: Protestant, Catholic, Hindu. I get a call from reporters about twice a month who are working on a story about the need to train doctors in religious understanding. Every time I throw my hands in the air. How will a doctor know whether a woman in a headscarf subscribes to all the tenets of her faith or not? Teaching him “what Muslims believe” is a futile objective. Better he do his job—medicine—and let the woman decide what options she is willing to pursue.
KH: When we’re planning your column month-to-month we do a lot of picking key terms, say, “hope,” or “dignity.” In your book, you focus on these issues, of course, but also on another key term in fights surrounding bodily autonomy, “choice.” For example, when you and Robb Miller (former Executive Director of End of Life Washington) talk about choice in dying and hospice. It seems like this discourse about “choice” is another bridge between end of life and reproductive rights. I wondered while reading, though, if you think that the rhetoric of choice still has the kind of political force it might have had, say, in the lead-up to and years following Roe v. Wade, or is it a term that’s lost some of that power and, thus, from which activists are moving on?
AN: Certainly the movement to make abortion affordable and accessible (in keeping with the Supreme Court justices’ decision on Roe v. Wade, without “undue burden”) has shifted away from choice language. I think because they saw how little room it allowed for discussions of disparity. But also, how it blocked out community and support—something anyone in a health care situation desperately needs. No one makes decisions about family planning or the end of their life in a vacuum. The shift to a more inclusive umbrella—“reproductive justice,” for instance—has been helpful not only for understanding the challenges to medical choice but also in the ways we discuss and work for greater gender and racial equality. Which is one of the reasons why I squirm a little when I hear those affiliated with the movement to legalize aid in dying focusing on choice. If you look at the statistics of who uses aid in dying, if you look at the movement itself, it tends to be well-educated and quite white. If they’re approaching aid in dying as a right, then I think they’ll have to consider some of the history of abortion access to be as inclusive as possible.
That said, I love the big key words like dignity, hope and autonomy because when you hold them still and pick apart the many meanings that we each imbue them with, you find that they can be conversation stoppers rather than helpful descriptors or tools. They can prevent dialogue from reaching the important facts. A world like dignity, for instance, has a long and loaded history. It can mean pretty much what anyone wants it to, depending on the conversation. It can signify equality or superiority, an earned type of regard or an inherent right. But I’ve also learned, through the course of the column, that tracking how these terms are used is intricate work that almost always exposes a kind of moral or ethical evasiveness.
KH: Speaking of activism, you write in the book about many kinds of work that you’ve done, including that as a teacher, as a writer, and as a hospice volunteer. And you talk about your relationship with activist organizations like Compassion & Choices. Do you see yourself as an activist? How/why, how/ why not?
AN: Oh god, I didn’t see this one coming. As always, probing question. In the sense that I desperately hope my work makes us all better see the inadequacies and injustices in health care (as well as society and the laws surrounding it), I’m much better at pointing things out and asking the right questions than I am at complying with the restrictions that activism requires. Here’s an example: my publicist sent The Good Death to Compassion & Choices to see if they would support it or promote it. But they came back to us with criticism of how I documented the movement’s history and criticism of my comparison of drugs used for aid in dying and execution. There was, for me, no other way to write about the aid in dying movement but to stray outside the boundaries of that movement—which must be disciplined, polished, savvy, and on message in order to achieve its goals. I get that. And I have switched from using “assisted suicide” in my writing because of the negative connotations that it has.
But I’m not willing to censor my research and curiosity for the sake of movement membership. And I shouldn’t have to. I certainly don’t think that journalists can be objective—we’re all writing from a personal history and belief system—but I’ve found that I can’t belong (be an affiliated activist) and still ask the kinds of questions that are most interesting to me. I’m ok with that. Institutions, whether they be faith denominations or rights movements, must by definition police their boundaries. I have much more fun learning what I can from cutting, pasting and associating the tools and stances that institutions take. Everybody’s a hypocrite. When and why? Now that’s the telling question.
KH: Can you tell me a bit about how you see the current climate around death and dying? Your book was recently reviewed in the New York Times Book Review alongside a couple of other volumes on the subject. What’s the nature of current interest in these issues and how does your book engage that interest?
AN: I think we’re paying attention to aid in dying and other end of life issues because we have to. The looming crisis of how to care for so many aging elders, the economic challenges of meeting those needs, both at the national and personal level, have come to the public’s attention. Passage of the Affordable Care Act, which required a lot of national dialogue about the requirements of a health care system and the responsibilities of all involved, also helped. And I think editors—who are losing parents and deeply involved in their caregiving due to monetary constraints and elder institutionalization—have been more willing to assign articles about end of life care and aging. We also can’t discount the market share of seniors, who are very much vested in ensuring that they get the most from public services. This and so much more, like fantastic bestselling books like Atul Gawande’s Being Mortal and Katy Butler’s Knocking on Heaven’s Door, have done a fantastic job of raising awareness. As has the movement behind aid in dying. In most states where it’s been legalized, the public conversation has led to greater hospice use and other end of life planning. There’s another aspect to all the interest in death and dying–the focus on burial and environmental issues, grieving, and the funeral industry. We see this in the proliferation of death cafes across the country, more being written about death doulas, and a public conversation among much younger citizens about the meaning of death. Some of this, I think, has to do with the way that religious affiliation has reshaped itself over the past few decades–we don’t have the assurance of the legacy denominations any more. So we’re searching.
KH: I’m really fascinated by the process of writing a book. It’s one of those things that, it seems to me, you can’t really learn how to do without doing it. What was it like to write this book? What were your goals while you were writing it? Both for yourself and for the project? What did you want to learn and to be able to share? And what kind of life do you want it to live now that’s out there in the world?
AN: When I started this research, I never anticipated that it would be public, that it would become a book. I was angry that my culture had let me down when Dad died, that it had failed to educate me about what was coming for him and for me. And so I just ran after my own curiosities and, being ridiculously meticulous, I tracked and filed everything as I went. When I started writing about these issues, I began to see that there might be a larger story to be told, one that strung together seemingly disparate stories–like my own experience, the history and evolution of hospice, elder care for prisoners, and disability issues as they intersected with aid in dying. I really didn’t know if others could see the connections–or if I could make the whole convincing. When I sat down to write–picking up loosely piled notes, interviews, newspaper clippings–I had already gone through the process of writing a book proposal. My incredible agent, Laurie Abkemeier at DeFiore & Company, helped me give the whole thing shape. The book proposal, as is often the case with nonfiction books, was a great blueprint for how to tackled it all. Then all I had to do was write. We both know what that process is like, riddled with doubt, puzzles, deletes, and more research. It was work! But it was good work. I had a calendar taped to my wall with a writing schedule. Laurie read every chapter as I wrote them. Of course it really helped to have so many author friends who could tell me I wasn’t crazy when challenges came up. I think I almost wrote the book too late–like I had been in the midst of the research, had talked about and written about so many of the topics from varying angles. It was a challenge to keep it fresh and exciting and not fall back on practiced ways to see something and think about it. But my editor at Beacon, Amy Caldwell, was a fantastic reader and thinker to partner with on this, and she helped keep it fresh and interesting. Which is to say: no author is on their own. This book was supported by so many people that it’s created its own community. And that’s the best kind of project.
Now that the book is no longer mine, that it’s out in the world and being read and made personal by people I won’t even meet, I can see it in a different way that is invigorating. I am so strongly engaged in the message that we need to not only discuss these issues but also address the systems that perpetuate injustice within them that I don’t see getting tired of talking about it any time soon. I’ll probably start trying to write my way into new areas of research, pursing new questions that take off from the work of this book. Which means you can count on “The Patient Body” addressing issues about religion and medicine that aren’t directly related to The Good Death.
Past “The Patient Body” columns can be found here.
Ann Neumann is a contributing editor at The Revealer and Guernica magazine and a visiting scholar at The Center for Religion and Media, NYU. Neumann‘s book, The Good Death, was published by Beacon Press this month.
Kali Handelman is editor of The Revealer and program coordinator at the NYU Center for Religion and Media. She received her BA in cultural and media studies from Eugene Lang College The New School for Liberal Arts and her MA in religious studies from Columbia University.