Too many books are forgotten as soon as they're published—that doesn't mean they're not worth reading, writing, or talking about. My reading list is generated by interest, whim, and chance—and by what's available at the Brooklyn Public Library.
When writing my reviews, I don’t Google anything about the book or author. To draw my impressions, I rely only on the book itself.
Two books, two doctors, one idea: what does it mean to die? Sherwin B. Nuland’s How We Die: Reflections on Life’s Final Chapterand Atul Gawande’s Being Mortal: Medicine and What Matters in the Endboth draw on the authors’ medical training, the faith in which each was raised (Nuland, Jewish; Gawande, Hindu), experiences of their patients’ terminal illnesses, and personal responses to a close family member dying. Yet they are remarkably different books, dispatches from the age in which they were published (1993 and 2014, respectively), and reflective of the doctors’ different temperaments. Nuland’s writing is impassioned and effusive; Gawande’s more matter-of-fact, yet philosophical. The books complement each other beautifully. From a science standpoint, both assure us, we have the facts of death down—but the facts only tell part of the story.
Nuland, a Clinical Professor of Surgery at Yale University, died in 2014. How We Diewas winner of the National Book Award and a finalist for the Pulitzer Prize, “conceived with no other plan in mind than that of conversing with people who want to know what it is like to die,” Nuland writes. His objective was “to present [death] in its biological and clinical reality, as seen by those who are witness to it and felt by those who experience it.”
Gawande, the son of two doctors, immigrants from India, is a staff writer for The New Yorker and professor at both Harvard Medical School and Harvard School of Public Health. Being Mortal“is a book about the modern experience of mortality,” he writes, “which challenges “[t]his experiment of making mortality a medical experience.”
Both books use, as a central reference point, Tolstoy’s story The Death of Ivan Ilyich, which Nuland summarizes as “the terrible solitude of death made lonely by withholding the truth [that Ilyich was dying].” Nuland marvels at Tolstoy’s portrayal of the suffering attached to the isolated understanding of one’s own mortality, and sees the story as an allegory for how we deal with dying to this day.
Gawande remembers reading and discussing the story in medical school. He and his fellow students “took for granted that honesty and kindness were basic responsibilities of a modern doctor.” Yet years into his own practice, he reflects about a patient, “We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease. His oncologists, radiation therapists, surgeons, and other doctors had all seen him through months of treatments for a problem that they knew could not be cured. We could never bring ourselves to discuss the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life.”
“What matters most” is something both doctors urge us to think about. Old age presents unique challenges, but as a society, we’re shockingly ill-prepared to deal with them, because our objectives aren’t agreed upon, or sometimes even spoken, let alone made clear. The books are a call to action, the sense of which Nuland discovers in a discussion he has with his school’s geriatric medicine professor, who states, ‘We wish to improve the quality of life for older individuals, not to prolong its duration.’”
Nuland explains that there are “two distinct lines of reasoning to explain the aging process. [The first is] “often called the ‘wear and tear’ theory. The other suggests that aging is due to the existence of a genetically predetermined life span that controls not only the longevity of individual cells but of organs and entire organisms.”
Clues are everywhere. But sometimes the most obvious ones are overlooked. Gawande observes a doctor at the Geriatrics Clinic at his hospital interacting with a patient, and is impatient with his methods, feeling he isn’t focusing on the patient’s most serious medical issues. After the patient leaves, the doctor tells Gawande, “‘You must always examine the feet.’” Had they not been clean, the lack of hygiene would suggest “neglect and real danger.”
Sometimes the mystery of what’s wrong is too relentlessly pursued. One of the dangers of modern medicine amounts to what Nuland calls “The Riddle.” Nuland writes, “Every medical specialist must admit that he has at times convinced patients to undergo diagnostic or therapeutic measures at a point in illness so far beyond reason that The Riddle might better have remained unsolved.” In some instances, “[d]oing more is likely to serve the doctor’s needs rather than the patient’s.”
Gawande’s experience supports this. “We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do,” he writes. “There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing…unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail.”
“To most people,” Nuland writes, “death remains a hidden secret, as eroticized as it is feared.” The “method of modern dying…takes place in the modern hospital, where it can be hidden, cleansed of its organic blight, and finally packaged for modern burial.” Nuland attempts to bring the process out into the open. He excels at explaining the clinical realities of dying (including a brutal murder; he also cites gun statistics in America which, even in the 1990s, are shockingly high compared to the rest of the world). Although Nuland writes, “The uniqueness of each of us extends even to the way we die,” he also points out that “some 85 percent of our aging population will succumb to the complications of one of only seven major entities: atherosclerosis, hypertension, adult-onset diabetes, obesity, mental depressing states such as Alzheimer’s and other dementias, cancer, and decreased resistance to infection.”
Although Nuland uses the language of science (writing about things like a “malignant neoplasm—what we call cancer”), he uses easy-to-understand metaphors to explain how that science functions. “Cancer cells are fixed at an age where they are still too young to have learned the rules of the society in which they live,” Nuland explains. “As with so many immature individuals of all living kinds, everything they do is excessive and uncoordinated with the needs or constraints of their neighbors.” He explains further. “Malignant cells concentrate their energies on reproduction rather than in partaking in the missions a tissue must carry out in order for the life of the organism to go on…they are reproductive but not productive. As individuals, they victimize a sedate, conforming society…A cluster of malignant cells is a disorganized autonomous mob of maladjusted adolescents, raging against the society from which it sprang. It is a street gang intent on mayhem…But in the end, there is no victory for cancer. When it kills its victim, it kills itself. A cancer is born with a death wish.” (This also feels like a metaphor for 21st Century America).
Gawande provides the understanding of the systems that traffic the dying and house modern death: hospitals, nursing homes, assisted living facilities, and hospice. He does an expert job recounting the history and evolution of poorhouses into hospitals and finally modern nursing homes, noting that they were “never created to help people facing dependency in old age. They were created to clear out hospital beds—which is why they were called ‘nursing’ homes.”
Reform came in 1965 through the creation of Medicare, “America’s health insurance for the aged and disabled,” because “the law specified that it would pay only for care in facilities that met basic health and safety standards.” Gawande points out, “Nursing homes have come a long way from the firetrap warehouses of neglect they used to be. But it seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible.” He doesn’t have to search hard for an example. His wife’s grandmother, moved from one facility to another in her old age, “felt incarcerated, like she was in prison for being old.”
Assisted living facilities promote freedom and independence—qualities that make life worth living—for as long as one can maintain them. Hospice, popularly understood as offering palliative care when nothing else can be done, seems to hold the promise for doing much more when that freedom and independence is threatened. “In ordinary medicine,” Gawande writes, “the goal is to extend life…Hospice…means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family once in a while.” Gawande points out that “Hospice has tried to offer a new idea for how we die…But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.”
“Medical professionals concentrate on repair of health, not sustenance of the soul,” Gawande elsewhere writes. “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.”
In both books, the doctors contend with errors in their medical judgment, usually made because they were afraid to tell their patients that they were actually dying. When his brother received a terminal diagnosis, Nuland writes, “I became convinced that telling my brother the absolute truth would ‘take away his only hope.’ I did exactly what I have warned others against.”
Gawande relays similar stories of evasion with his patients. No one wants to be seen as responsible for taking away their “hope.” But hope for what? Nuland writes, “Hope resides in the meaning of what our lives have been,” noting, “[m]ine is not the first voice to suggest that as patients, as families, and even as doctors, we need to find hope in other ways, more realistic ways, than in the pursuit of elusive and danger-filled cures.”
Gawande points to study that showed “Two-thirds of the terminal cancer patients…reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death,” and that “people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.”
Not all of the reforms the books advocate for concern decisions made at the ends of our lives. “Where, in fact,” Nuland wonders, “is the ever-available personal doctor of yesterday, on whose counsel we could rely? No one is in charge.” He writes, “Between the lines of this book lies an unspoken plea for the resurrection of the family doctor. Each one of us needs a guide who knows us as well as he knows the pathways by which we can approach death.”
“People die only once,” Gawande points out. “They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help prepare for what is to come—and escape a warehoused oblivion that few really want.”
The system by which care is administered is very much on both men’s minds. In a Coda written in 2010, Nuland laments “the fetters of institutional bureaucracy that nowadays encumbers every acute care hospital in the United States,” noting “[t]heir concern is with payment and not people.” For new generations of doctors, “it is the system they are learning, rather than how to be better healers.” We are quick to praise advances in science, but as Nuland points out, “with the science came the technology. And with the technology came the distancing.”
On the subject of euthanasia (assisted suicide), the doctors seem divided. Gawande writes, “the debate is about what mistakes we fear most—the mistake of prolonging suffering or the mistake of shortening valued life.” Nuland is a bit more cagey. “Better to know what dying is like, and better to make choices that are most likely to avert the worst of it. What cannot be averted can usually at least be mitigated.” Reading between subsequent lines, it seems Nuland helped quite a few of his patients find peace at the end of their lives.
“These days,” Nuland writes, “many hospitalized patients die only when a doctor has decided that the right time has come…I believe that the fantasy of controlling nature lies at the very basis of modern science.” The emphasis, he thinks, is on the wrong thing. “[T]he real event taking place at the end of our life is our death, not the attempts to prevent it.”
“For human beings, life is meaningful because it is a story,” Gawande writes. “People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms.”
Early experiences of death inform our feelings about it. Nuland’s family—“[t]hree generations—shared a four-room apartment in the Bronx”—including his beloved grandmother, Bubbeh, who grew old before his eyes; he remembers hearing her get up to pee into an empty coffee can in the middle of the night.
Old, infirm, nearly blind, Bubbeh one morning wiped the kitchen table, and as young Nuland remembers, “She seemed to be looking at something outside the window behind my chair instead of at the table in front of her…I shouted, ‘Bubbeh, Bubbeh!’ but it made no difference. She was beyond hearing me. The cloth slipped from her hand and she crumpled soundlessly to the floor.”
Bubbeh died a few days later, at home. Of her funeral, Nuland notes, “That day would surely have been a lot easier for me, and its memory less painful, had I but known that not only my own grandmother but indeed everyone becomes littler with death—when the human spirit departs, it takes with it the vital stuffing of life.” So perhaps here we find Nuland’s first reason for attempting to demystify death—in order to comfort us with the facts of it.
While Gawande writes of his grandfather in India living as he wished, to the ripe old age of nearly 110, “age no longer has the value of rarity,” and families are no longer set up to provide for our elders. Gawande doesn’t lament the change, but points out, “The historical pattern is clear: as soon as people got the resources and opportunity to abandon that way of life, they were gone.” Gawande notes, “Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial.” He experiences its trials firsthand when a tumor was discovered in his father’s spine. At one appointment with an oncologist, “[t]he discussion became difficult for me or my parents to follow, despite all three of us being doctors. There were too many options, too many risks and benefits to consider with every possible path, and the conversation never got to what he cared about, which was finding a path with the best chance of maintaining a life he’d find worthwhile.” Yet Gawande’s father is an active participant in the decisions regarding his care and treatment right up to the very end of his life. This seems to mitigate the suffering for both him and his family.
Nuland laments that too few with firsthand experience of death write about it, while poets and philosophers have made speculations for centuries. Yet it is to an essayist, the “sixteenth-century Frenchman Michel de Montaigne,” that Nuland himself turns for comfort, who wrote that “death is easiest for those who during their lives have given it most thought, as though always to be prepared for its imminence,” and “‘[t]he utility of living consists not in the length of days, but in the use of time.’”
Gawande has similar moments of personal reflection. After dumping his father’s ashes in the Ganges River, Gawande reflects, “although I didn’t feel my dad was anywhere in that cup and a half of gray, powdery ash, I felt that we’d connected him to something far bigger than ourselves, in this place where people had been performing these rituals for so long.”
Both books are moving, informative accounts. They are difficult to read because the facts are hard to face. We will all die. We will all lose the ones we love. These two doctors provide a remarkable service by easing our burden of the unknown.
Of course, when speaking of death and the unknown, there is always the question of an afterlife. These men are scientists. They limit their discussion to that which science can measure. Nuland himself is dead. Who knows what he’s discovered in that new frontier, the nothing, which he writes, “seems so different from the nothing that preceded life.” And yet by the words he’s put down here, and the philosophy by which he lived, he seemed uniquely prepared for death, and whatever comes after. He writes, “As a confirmed skeptic, I am bound by the conviction that we must not only question all things but be willing to believe that all things are possible.”