Dying was once thought of principally as an art, as ars moriendi; today it more commonly takes place under the auspicies of science. Ann Neumann’s new book, The Good Death: An Exploration of Dying in America, asks whether it can still at least be good, or good enough.
The New York Times read her as a kind of conservative who holds that “we are not so good at death as we used to be.” A review in America chided Neumann, herself a Catholic convert, for being insufficiently impressed by church policies on end-of-life issues, and for inadequately clarifying her position. But that’s part of the point: the quest for clear and universalizable policies runs aground on this book’s real-life stories.
Still, I asked Neumann, a longtime friend, to clarify where she stands—in particular, on the nature and nurture of death in our time.
Where did this book come from in your life? What faith, and what works?
In the fall of 2005, I quit my job to go home and care for my father until his death from non-Hodgkins Lymphoma. He had been diagnosed at the age of 50, 10 years before, and although we lived with his illness for so long—the ups and downs of chemotherapy and ongoing drug treatments—his death and the way he died was a shock to me. Dad had what’s called terminal restlessness, a common condition of terminal patients in which they become agitated and physically combative.
In the years leading up to his death, I believed he would one day go home to his bed, he would calmly tell us he loved us, then he would close his eyes and stop breathing. But my impression of what death is like was completely wrong.
I was devastated by the caretaking, the months of sleeplessness, the morphine, the vomit and feces, the family tussles, the paperwork; by giving up my own life to the isolation of caring for him, and the months in my childhood home confronting old history and abandoned versions of myself; and then the truth of absence, his absence. The fatigue and grief were overwhelming. But one emotion crowded them all out: I was angry that my elder family members, the hospice nurses and doctors, my culture, my faith had so poorly prepared me for his last months. The Good Death started as a quest to answer this one question: Why is the way we discuss death so unlike how we actually die? I became a hospice volunteer. I talked to everyone I could. I became a scholar of the dying experience.
Did you find that there is anything left to be discovered about death?
I kept coming back to this Peter Trachtenberg passage from the introduction to his 2008 Book of Calamities: “Before suffering people can form a coherent picture of their suffering, they must first ask questions about it, or maybe of it. In doing so, they are performing the work of science and philosophy, interrogating their reality in order to derive a thesis about it.”
I learned that end of life care was much more complicated and misunderstood than even my experience with my father had shown me. The book is really the stories of the people I encounter over the next seven years: terminal patients, end of life activists, doctors, nurses, lawyers, pastors, bioethicists, prisoners. It’s a book of stories about the people who generously let me into their lives during one of the most difficult and challenging experiences. Through their stories I hope I answer the question of why we die the way we do, in hospitals instead of at home, deeply entangled in the ethics of medicine, law and religion as they influence our health care system.
It became very important to me that I wasn’t just advocating for more information for elders and their families—more access to advanced directives, a better understanding of how to navigate the complicated health care system. I knew from the people I met that they were in a system that was continuously letting them down. I wanted to examine the ethical and moral influences on our current way of dying: How has American religious history shaped our health care system, our public policy and our laws? And what about these laws or practices prevented some from making the best moral decisions for themselves and their families?
Do you mean to say that the religious history is mainly one of interference, of preventing the best decisions? Is it that simple?
Nothing about death or religion is ever simple, as anyone who’s cared for a dying loved one will tell you. Ritual, religious or otherwise, is absolutely vital to how we face the visceral realities of death. But aside from looking at how religious thought and history shape our public policy and medical system, there’s a personal connection for me. I’m steeped in faith traditions. My family has lived for generations in Lancaster County, Pa., and made the Mennonite church their home. In college I went through Catholic catechism and was baptized. So there’s no way for me to approach issues of death and dying but through my own faith.
That said, the country’s religious landscape is changing rapidly. So we have cultural, medical and legal institutions that once fit our predominantly Protestant faith—a fit that is no longer working for many who have other perspectives. There has always been dissent among members of the legacy denominations, of course. But as medicine has rapidly advanced—starting in the 1960s and ’70s, at the same time that new movements were changing the way women and minorities think about autonomy and rights—the courts and religion have been working to catch up. So that space between “traditional” frameworks of morality and new medical possibilities has posed ethical problems for patients. When can we turn off the respirator? What is “natural” death? Many patients struggle to know what decisions they should make, and they recognize that medical science doesn’t have all the answers. Faith can help them act on their own moral values. But when particular faith ideas are codified in medical practice or laws, it can impede patients from doing what they think is best.
A recent America article expressed concern about the trend toward “patient autonomy” as a symptom of an over-individualized society. Is there a danger that the pursuit of a good death might become just the latest form of acquisitive consumerism?
It’s only a danger in the most limited way. To answer this question, we first have to acknowledge that patient autonomy, or patient choice, is already very qualified. Our medical, legal and religious systems all contain highly cultivated structures of disparity based on ability, gender, sexuality, socioeconomic class, race, belief or even region. So ultimately, very few people actually have autonomy. Choice language hasn’t always served us well because it presupposes that we have choices. It can also present a false binary of certain decisions—consent to this treatment or die—and moralize or trivialize choice. No one decides to remove a feeding tube on a whim. No one decides to turn off a respirator on a whim.
Often those arguing for less patient autonomy are only doing so because they don’t like the “choices” some are making, either because of some moral vanity—they think they know what’s right for others—or an adherence to principle—they think universal judgements serve everyone.
A dying patient who has never watched someone die, who of course has never gone through it themselves and who lives in a culture where death is hidden inside institutions seldom understands the dire ramifications of their medical decisions. Doctors are seldom trained in how to inform patients of terminal diagnoses, how to discuss negative outcomes, how to talk about end of life issues. Doctors may not fully disclose all the possibilities of treatment because doing so is difficult, or because they feel compelled to sustain the patient’s hope.
No one wants to suffer. Even when we acknowledge that suffering is complex and uniquely defined for everyone, even when we acknowledge that science and the body are mysterious, terminal patients fully understand that there are some things worse than earthly death.
The church’s history of martyrdom certainly suggests that as well. But don’t you think there is something precious about letting the process of death take its course? Or do you think the church should reconsider its official opposition to artificially hastening one’s death?
“Letting the process of death take its course” is an oversimplification of what dying, particularly today, entails. Many who defend “natural death” fail to grasp—or acknowledge —the very unnatural mechanisms of a ventilator tube inserted through a surgically carved hole in the throat or a silicon feeding tube jutting through a hole cut in the stomach. Catholic hospitals allow removal of these devices if a patient is terminal and overburdened by them. Just as Catholic hospitals allow for sedation unto death so long as the objective is to keep a terminal patient comfortable. Aquinas called it the “double effect,” and it is—rightly—quite common. So while the the U.S. bishops’ Ethical and Religious Directives emphatically compel practitioners to alleviate suffering, they also, in some (highly politicized) situations hold up suffering as a path to salvation. Number 61 of the Ethical and Religious Directives reads, “Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.”
By “the Christian understanding,” church leaders mean their own interpretation of Christian belief. Every death is unique, every one. Just as every life and every faith is unique. Church leaders will continue to do what they will, applying their own broad principles to unique situations. But such application is extraordinarily painful for many, inside and outside the Catholic faith. Even if every patient understood that death today, in this hyper-medicalized (and, for the most part, benevolent) environment, does not simply “take its course,” even if every patient could be fully informed of a Catholic hospital’s intentions for their suffering, even if Catholic hospitals only treated those who abide by this interpretation of Catholic belief, Catholic influence on health care law and provision as a whole, across our extraordinarily diverse population, would still inhibit individual conscience.
I’m not saying there are no bright lines. Of course there are. But our moralities are complex, particularly when applied to our own bodies. If the church’s prohibition on removing feeding tubes from persistent vegetative state patients (like Terri Schiavo) or on doctors’ abilities to prescribe lethal medication to terminal patients—not to mention other stances on marriage, gender and sexuality—is rooted in concern for the patient’s soul, regardless of how that patient conceives of their soul, it is a violation of conscience. It’s a violation that, because of the church’s great influence on health care delivery, U.S. law and politics, should concern us all.
A few years ago, I asked Richard Doerflinger, Associate Director of Pro-Life Activities at the USCCB, if it was immoral to end a dying life, even if that life was our own. “It’s not our own,” he said. Church leaders are deciding who our bodies and our pain belong to. My faithful conscience tells me that’s my decision.
How have you seen Catholic medical teachings and guidelines play out in particular lives and deaths?
My hospice is affiliated with a Jewish hospital so I don’t have hands-on experience with death in a Catholic setting. But there’s a lot of material out there, from news articles to research to interviews with patients and doctors to lawsuits, about how general medical practice is deviated from in Catholic facilities. The differences are evident in the Ethical and Religious Directives, but what happens on the ground is much more nuanced than the ERDs show. Bishop oversight of hospitals varies, as do the behaviors of medical practitioners. Too, patient knowledge of alternative facilities and access to them varies. New work exposing challenges at the end of life—regarding removal of respirators or feeding tubes, or denying access to aid in dying in the states where it’s legal—is coming out all the time.
It’s difficult to overlook these problems when Catholic hospitals provide care to a pluralistic society, with little or no financing from Catholic organizations. (Like other nonprofit hospitals, they are 50 percent funded by state and local government.) But Catholic hospitals are also well known for their quality service. There’s a reason they manage one-fifth of all hospital beds in the country, many of the top HMOs, and thousands of elder and long-term care facilities.
Some kind of preparation for death is an ancient art that manifests itself in religious traditions from around the world. (I remember, at a Buddhist monastery once, a couple saying how each morning they remind each other that they will both die.) Are there particular preparations that you recommend now, given our present medical, legal and spiritual circumstances?
Rituals that prepare us for death, the little mental and physical exercises that we adopt to keep us aware of our own mortality, are like cures for the hiccups. Everybody has one that works for them, that they’re committed to and that they’re readily willing to share at your first staccato inhalation of breath. I try to stay away from the “be here now” stuff, but I have learned a number of things from my dying friends and patients that are important to me: Try everything. Twice. Put your fears into perspective, leaving the big ones where you can see them. Embrace the little ones; they’re not so bad up close. Act like your wants—the real ones—are legitimate. Say what you think. Pretend that you are in the shoes of every person you encounter. Slow the hell down.