The Good Death: An Exploration of Dying in America
February 16, 2016
In her new book, Ann Neumann looks squarely at the issues surrounding death and dying in America.
No matter what your age, death is not a naturally appealing topic of conversation. Hemingway’s popular assertion about “happiness in intelligent people” being rare is perhaps a bit broad and self-congratulatory to the unhappy person, but it can also carry some truth if we simply equate intelligence with a tendency toward deliberate thought. While we could debate whether his drinking led to over-thinking or vice versa, it in any case seems evident that Hemingway was a person well-acquainted with death. And while contemplating death can perhaps help an artist write one of his generation’s greatest novels, there are apparently other benefits to pondering this daunting topic.
Observing the current state of the “industry” of death in the United States gives some indication of where we, as a nation, are on the subject. The stories that appear nationally tend to appear at the national level only because they are public crises of definition or process. Even the options for observation and disposal of a deceased family member’s body presents a broad field of opinion and definition, rubbing uncomfortably up against that thing which, at such a sensitive time, can seem unwelcome: the law. In a nation of 300 million people, we expect disagreement on specifically what death is, when death can be considered imminent, and what options are or should be available when we or a loved one are near death. For most of us, though, these things are nowhere near our consciousness—we’re simply too pre-occupied with the mechanics of our lives to think about our deaths. Some of us might not worry or think about death at all—either we’re too far from the likelihood of that event or we just don’t think of it as important during our lives. But for the curious, the concerned, and the death-conscious, there is Ann Neumann’s book The Good Death: An Exploration of Dying in America.
The Good Death reads like a tour of the end-of-life landscape, with Neumann’s first-hand stories blended with those lent from colleagues or picked from the news from previous decades. Beginning the book with the story of her own father’s death after losing a battle with non-Hodgkin’s lymphoma, Neumann shows us what preparedness can do for a patient and his family. Her father’s life ended in hospice care, a segment of end-of-life care most of us consider progressive. But as her stories—those of her father and other people for whom Neumann volunteered care during hospice—demonstrate, hospice care in the United States is still laden with complex laws that can complicate end-of-life care. Simply deciding to enter hospice can be challenging, especially when a hospital’s or physician’s modus operandi is to exhaust all courses of treatment, no matter the slight odds of efficacy. “Saying no to continued treatment,” Neumann says, “can feel to family like deciding to end their loved one’s life, like a betrayal.” But there are options outside of continued treatment, as Neumann shows throughout The Good Death.
Because of medical developments, we’ve gotten away from caring for our dying, from seeing death up close, just as we’ve gotten away from making our own pickles.
When my wife asked me what I was reading, she was surprised at my reply. This could be because I favor fiction to non-fiction by a factor of 10, but I think death is also simply something too easily ignored, shut out by a population of very busy people, with our families, entertainment, and plans for tomorrow or next month. I don’t feel particularly thrilled by mulling over death, but I do feel empowered by sharpening my understanding of what options exist inside and outside of the law. I’m not yet very near old age, but I think about death because I have loved ones and I know death sometimes evades the statistical norm and becomes a concern of a person in middle or early life. And in the event of my own death, I want to alleviate those around me of the frustration of ambiguity.
In a country so celebrated for its freedoms, and yet so embattled over what freedom and liberty mean in the multitude of scenarios we face daily, it can be daunting to try to actually grab hold of one’s liberties. I think people search out and need their freedoms most profoundly during times of vulnerability, and I can’t imagine a greater vulnerability than the one each person must encounter before death. Whatever privacies and freedoms we expect in life, we also should expect in death and the choices we make around that event. And as much as it is an exploration of death itself, The Good Death is also a book about privacy and citizens’ rights in the United States, and the freedom of American citizens to live and die by their own principles.
Neumann’s contribution to the end-of-life conversation is subtly biased. Her experience with death is extensive and exists on a very personal level. Throughout The Good Death, it’s evident that Neumann favors choice among dying patients—the ability to choose how and when to die when death is imminent. But she is a journalist, and her work here also very carefully frames death in terms that seek to simply perpetuate the conversation and draw readers to dig deeper into the subject. While the book is lightly colored with Neumann’s opinion, it is also rooted firmly in thorough journalism and extensive statistics.
Neumann cites states like Montana, Oregon, and Washington, which have led the country in “Death with Dignity” legislation, protecting the right of a terminal patient to seek assistance in death. She tells the story of Montanan Robert Baxter, whose losing struggle with leukemia led him to testify on behalf of the state’s pending legislation. Though Baxter died hours before the ruling in favor of Montana’s new law, Baxter’s testimony helped ensure that others in Montana will have the right to a death the feel more dignified.
Neumann pivots from the story of Baxter directly into the conversation about freedom of religion.
There’s something very heroic about Robert Baxter … it must have taken a particular determination to pursue a court case while he was terminally ill. … I was also thinking about the criticism he endured from opponents of aid in dying who claim the law is unnecessary. Some say patients are giving up, taking the easy way out instead of facing death. What they mean is that Baxter’s pain and suffering were not important, or that they were expected and necessary. They mean that he should have accepted the authority of a medical system that had gone off the rails and the state laws that enforced it—and the machines and constant tests and treatments foisted on him. They said he was not in charge of his body, that decisions regarding life and death belonged to a higher power, one he didn’t believe in.
The Good Death digs into this national conversation about the dictation of patient rights by global religious organizations and private corporations. Neumann’s conversation with Sue Porter, a participant in the documentary film How to Die in Oregon precipitates discussion of the Hobby Lobby case and what implications cases like that create for a patient seeking complete liberty and autonomy in the processes of her death. Porter draws the connection between the Hobby Lobby ruling and the potential “challenges now directly affecting patient’s access to aid in dying because they established a hierarchy of conscience.”
It’s true that a book like The Good Death is not for the faint of heart. But then neither is death itself. Talking about dying and the mechanics involved in our own deaths can feel unnatural. Television and film prime us to cling to the romantic vision of death—passing into gentle sleep with no visitation of pain. But the realities introduced by modern medicine and the industries around dying in America have stripped away any possibility for death to be only natural. It’s because of this that I feel a need to steel myself against ambiguity and acquaint myself with the landscape of death. The Good Death gives a peek at how awful death can be, but also how vastly better it can be if a patient and his family are equipped with an understanding of the patient’s wishes and how those wishes mesh with the laws of the state in which he lives. The conclusion is not necessarily one in favor of assistance in death, but overwhelmingly it is one in favor of understanding the landscape. Beginning that journey to understanding can definitely be uncomfortable, but the benefits of knowing death during your life can pay off in a big way when death finally arrives. Or as Ann Neumann would say:
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. It is possible to look it in the face, to know how it will come, to accept its inevitability. Knowing death makes facing it bearable.