Caitlin Doughty, author of Smoke Gets in Your Eyes.
(image via The Order of the Good Death)
By Ann Neumann
Public interest in death and dying seems to be on an upswing; from the rapid legalization of aid in dying across the country to the media blitz surrounding Brittany Maynard (the 29 year-old woman who legally ended her own life last year in Oregon) end of life issues are becoming a common national interest. A number of books published in 2014, including a few bestsellers, have, in fresh and exciting ways, addressed how Americans are dying. And it’s about time! The national population is rapidly aging and it’s obvious that, while the Affordable Care Act has insured many, our health care system is inadequately suited to meet the needs of most citizens, particularly elders.
In this installment of “The Patient Body,” our first of 2015, I look at four major books from 2014 that you should run out and read. In unique ways each examines death and dying, from how we care for the dead, to how we talk about end of life ethics, to how our medical system has overshot its own purposes. But, as I note throughout, good as these books are, none of them gives a serious eye to religion, despite the fact that it is one of the primary factors in how the dying and their families, consciously or unconsciously, form an ethics regarding end of life wishes and address the great and inescapable facts of how and why we die.
Smoke Gets In Your Eyes & Other Lessons from the Crematory by Caitlin Doughty (Norton)
There’s no one quite like Caitlin Doughty. That may sound glib but it’s not. Her early fascination with death took her first to a job at a crematory in San Francisco and then on to mortuary school where she became a licensed mortician. In 2011, Doughty founded The Order of the Good Death, a “group of funeral industry professionals, academics, and artists exploring ways to prepare a death phobic culture for their inevitable mortality.” She also has a popular YouTube series called “Ask a Mortician” where she answers all types of questions about the funeral industry and body preparation. Episodes have titles like, “Are These Really My Mother’s Ashes?” and “Composting Dead Bodies.” What Doughty does so well is upend the ideas that we have about those who work with dead bodies. She’s young and hellishly funny. She sports Betty Paige-style hair, lovely dresses, and she’s not afraid to make funny noises or faces on camera. This refreshing lightness, when applied to something we typically prefer to not think about—the dead bodies of our loved ones—is what makes Smoke Gets In Your Eyes a worthwhile read. “After whirling Mr. Martinez to ash in the Cremulator, I poured him into a plastic bag and sealed it with a bread bag twist tie,” she writes in a tone, sustained throughout the book, that is at the same time respectful, practical, and funny. But don’t let Doughty’s humor fool you. She knows what she’s talking about. (I once emailed Doughty—we have a mutual friend—to find out why exactly dead bodies are wrapped in plastic. “The purge,” she told me. I’ll let you look that one up.) An instant bestseller last year, the book is (like two other books on this list) a memoir. In some ways, it’s a coming-of-age story that chronicles how Doughty grew from a child fascinated with death to “Your Mortician,” an advocate for death acceptance and reform of the funeral industry.
I spend a lot of time with the dying and I’ve seen my share of corpses, but Smoke still managed to startle me. In one scene, Doughty cremates an obese woman in the Cremulator, newly refurbished, and liquid body fat pours out onto the floor. Mopping it up, Doughty ruins one of her dresses. Doughty’s point is that dead bodies—and their care—are a fact of life; their preparation is something that we should be more closely engaged with as a society. And not for sentimental reasons only. We grieve better, we care for our dying better, when we are unafraid of death.
I wish Doughty had spent more time with the history of funeral rites and practices, though. More background would have helped to explain how we’ve come to treat our dead the way we do—and an emphasis on ritual, religious or not, would have informed her conversation about grief and bolstered her argument that approaching death with open eyes makes grieving easier.
Deconstructing Dignity: A Critique of the Right-to-Die Debate by Scott Cutler Shershow (Chicago University Press)
If you’ve been paying attention to the aid in dying debate the past few years, or bioethics in general, there are a few key words and phrases that seem vital to the conversation but are nonetheless very hard to pin down. Hope, pain, quality of life, autonomy, even aid in dying are terms that can appear to shift in meaning depending on who is using them. Shershow, a professor of English at University of California, Davis, picks up on one term that is particularly squishy—dignity—and gives it a full treatment. “The strange groundlessness of the concept of human dignity proves to be particularly pertinent in considering the modern debate about a ‘right to die,’” Shershow writes in the introduction.
The book is written for an academic audience and the first chapter, “Methological Introduction: A Strategy and Protocol of Deconstruction,” can be tough going. In it, Shershow frames his critique of dignity in deconstruction, a method of analysis first developed by the French philosopher Jacques Derrida in the 1960s. Derrida’s work can be as fascinating as it is confounding, even when you’re reading a secondary source, but if you’re a layperson like I am, don’t let that stop you from picking up this book. Subsequent chapters chart the philosophical and historical use of terms like human dignity, suicide, sovereignty, sanctity and sacrifice to stunning and enlightening effect. And he’s aware and expansive about the religious origins and teachings regarding such terms, how they’ve been used throughout history and for what secular or theological purposes. His aim, though, is to debunk not employ the various contemporary uses of dignity. Therefore, while his argument is not specifically focused on religious meaning making, he doesn’t shy away from holy origins. That said, it is language’s use that Shershow is after.
Shershow writes, “Thus, even the ‘with’ of the crucial phrase ‘death with dignity’ can only mark a space of controversy and question: it names a condition in which a certain crucial yet indefinable form of value seems always at once, and in multiplying contradictory ways, both present and absent.” The death with dignity (or whatever you wish to call it) debate rages on—the bills that legalized aid in dying in Oregon, Washington and Vermont are titled “Death with Dignity”; this year, depending on how Governor Chris Christie approaches his likely presidential campaign, New Jersey could become the sixth state to legalize aid in dying since Oregon did so in 1994. We’ll all soon be asked to consider and reconsider what we mean when we say “dignity.”
Knocking on Heaven’s Door: The Path to a Better Way of Death by Katy Butler (Scribner)
I’m not afraid to say that Katy Butler’s heartbreakingly beautiful—and beautifully written—book had me in tears. It broke my heart. But that was Butler’s intent; the book grew out of an article she wrote for The New York Times magazine titled, “What Broke My Father’s Heart,” and leads us slowly through an account of her father’s last years as Butler and her mother struggle with his decline, dementia, and their futile effort to turn off his pacemaker. “Sewn into a hump of skin and muscle below his right clavicle was the pacemaker that helped his heart outlive his brain,” Butler writes. Using a deeply personal account of her experience as an adult daughter and caregiver, minutely researched information on the costs of end of life treatment (most of which fail to do more than prolong death), and an almost theological exploration of her Buddhist faith, Butler delivers a scathing critique of end of life medical ethics. Her diagnosis: medicine is failing our elders by over treating them. Her cure is to change the way we talk to patients about dying, reform medical culture, and increase social awareness of the trauma and tragedy that dying patients and their families experience every day in our hospitals.
One prevalent critique of hospice culture, which, despite its roots in British Christianity, has absorbed a Western version of Eastern religions, particularly Buddhism, is that it assumes we must all die in a particular way: in quiet comfort that allows for reflection. “Making peace” with the events and relationships and regrets of one’s life may be helpful to some, but not all. I appreciate Butler’s use of Buddhism to grapple with her parents’ death but don’t expect this book to offer a critique of general religious mores. Butler’s memoir is about her personal experience and the painful over treatment that surrounds death—a message that can make anyone facing the death of a parent feel less alone.
Today a neighbor texted to tell me that her grandmother has just been moved to a nursing home. “She has had no quality of life for a long time… She has a pacemaker that is keeping her alive,” she wrote. I slipped on my shoes and immediately walked my copy of Knocking on Heaven’s Door over to her. Even if an interest in end of life care and its personal toll doesn’t entice you to grab this book, you should read it for Butler’s incredible research and for her transcendent writing.
Being Mortal: Medicine and What Matters in the End by Atul Gawande (Metropolitan Books)
Of course the end of life book that overtook them all last year was the bestseller by doctor and The New Yorker contributor, Atul Gawande. The book is a great place to start if you don’t yet grasp just how difficult it is to die painlessly in this country. Gawande’s writing is clean and thoughtful, his research is impeccable, and his compassion for the individuals we encounter in the book is moving. In short, it’s a good read.
Gawande is deeply familiar with medical practice and health care policy (he worked with Hillary Clinton on her failed health care reform bill in the ‘90s before going to medical school), so the book feels authoritative and necessary, but he’s not taking any leaps here. In fact, as Marcia Angell, doctor, Harvard Lecturer, and former editor of the New England Journal of Medicine, pointed out in her recent review of Being Mortal at The New York Review of Books, “A Better Way Out,” Gawande fails to get into the stickier economic or ethical points of health care for the dying. To me, his side-step of the controversial subject of aid in dying feels like a glaring hole in the book, exposing Gawande’s political position as relatively conservative. He’s a doctor and writer who supposes the solutions to our end of life care crisis lies within the current system—and unimaginatively fails to note that it’s the system itself that is entrenching and exacerbating it.
The son of Indian parents (“My parents tried to raise me Hindu,” Gawande told Grace Bello in an interview in which he discusses spreading his father’s ashes on the Ganges River in India), it’s possible that Gawande might have a position from which to analyze how a non-Western religious culture could challenge and support those who are dying—and propel us to make particular kinds of decisions. Yet, he doesn’t approach culture, let alone religion, in any way, preferring to stick to policy territory and the shortfalls of the medical industry.
These omissions are not minor, in my judgment, but Being Mortal does one thing very, very well. It brings the conversation of the imploding crisis of end of life care into the mainstream and legitimizes it. And it does so with a book that is accessible to many who might otherwise shy away from the subject. We should be talking with concern and intent about futile care, end of life care costs, and aid in dying. Gawande’s Being Mortal clears a place for that necessary conversation to begin.
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“The Patient Body” is a monthly column about the intersection of religion and medicine. Prior columns can be read here:
Reading HuffPo’s “Hospice, Inc.”
Your Ethical and Religious Directives
Hospitals and the Pretense of Charity
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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, will be published by Beacon Press in January 2016.