Being Mortal: Medicine and What Happens in the End is the exact opposite of everything on your summer reading list, but it should be the first book you pick up.
This is Atul Gawande’s fourth and yet most personal book. It is a critical examination on the specifically American tendency to make the end of our lives a medical experience instead of a meaningful, personal one. Gawande offers anecdotal and research-based evidence that suggest we are approaching death and dying in denial.
“This is a modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run–and when we imagine ourselves to have much more time than we do–our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. 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. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there is always something. We want these choices. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Fix Something. Is there any way out of this?”
Gawande is a surgeon at Brigham and Women’s Hospital in Boston so he brings a note of expertise to the subject. He speaks sincerely about being in the exact position he urges doctors to step away from: that of offering the patient more alternatives rather than encouraging them to accept finality of their diagnosis. He is very candid about how monumentally difficult it is not to become as optimistic as the patient does. Still, he urges medical professionals to do the hard work and make death and dying more about being comfortable with the final days, weeks, months, or years instead of pushing for more experimental treatment or miracle cures. In his book, Gawande advocates for the use of hospice and shows compelling evidence that suggests that choosing it as opposed to continuing treatment can actually prolong life, writing, “you live longer only when you stop trying to live longer.”
His stories are very personal: some are about friends or acquaintances, patients he’s treated, and even family members, including is grandfather who lived to be 110 years old. He discusses the evolution of nursing homes and assisted living and how they can so easily crush the spirits of the inhabitants if they fail to honor their independence. In addition to being a surgeon, Gawande is also a staff writer for The New Yorker. He is a gifted writer, adept at seamlessly weaving narrative and scientific research into a compelling argument.
Over and over again Gawande pleas for us to reconsider how we approach our end-of-life moments. It never feels redundant, however, because it represents not only a radical idea but a much larger cultural shift in our thinking and attitudes. In 1945 nearly all deaths occurred at home, but by the 1980s, only 17% did. We’ve hospitalized and institutionalized the most sacred event of our lives.
I can’t help but recall Brittany Maynard’s story from last fall. To recap, in June 2014 Brittany was told by her doctors that her brain cancer was inoperable and terminal. She was 29 years old and a newlywed hoping to soon start a family. Instead, she and her family moved from the Bay Area to Oregon in order for her to legally obtain aid-in-dying medication. She had consulted with her doctors about what the end of her life would look like, body-wracking seizures and loss of control over most bodily functions, and knew she wanted to die before it reached that point. She died on November 1 after suffering a seizure only hours before, 30 minutes after taking the lethal pill. She was surrounded by her closest family and friends while a playlist she made beforehand played softly in the background.
Her choice of death with dignity has since reignited a national conversation about the moral and ethical ramifications of taking control of the end of our lives. Many states have reopened discussions on legislation for death-with-dignity bills. It is a charged conversation, but one that I believe Atul Gawande is fighting for.
“All we ask is to be allowed to remain the writers of our own story. The story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties.
This is why the betrayals of the body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being moral is the battle to maintain the integrity of one’s life–to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but to expand them, in the name of living a worthwhile life.”
Our impulse is to refuse these kinds of conversations. They are morbid, disturbing, and unsettling. But, as Gawande shows time and again, they are essential. It’s too difficult to make critical decisions when the time of crisis arrives. We are emotional and hopeful to a fault. The more we talk about what we want our end-of-life moments to look like and how we’d like them to play out–that is, well before the eleventh hour–the more likely we are to find ourselves in a position of dignity and peace.
What are your thoughts? Have you read this book yet? I’m so curious to hear what you think about these ideas.
p.s. For further reading, see “Overkill”, Gawande’s most recent article for The New Yorker.
(image of Atul Gawande by Aubrey Calo via his website)
