4 Questions for the End of Life

Last week, I read Atul Gawande’s recent book, Being Mortal: Medicine and What Matters in the End. “The end” in the subtitle means the book is about, to borrow Jessica Mitford’s classic title, “the American way of death.” Gawande points out, however, that the problems he sees with how medicine approaches how we die are not limited to the United States, or even to the industrialized world, but are beginning to affect even the developing nations. They’re another corollary to globalism.

Gawande bookAtul Gawande is a neurosurgeon who writes beautifully (he brought me to tears more than once in this short book), and is involved in a handful of meaningful projects related to modern medicine. He believes that medicine, for all the good it does, may not have all the answers to life’s pressing questions—indeed, he sincerely doubts that it does. Further, he is convinced that medicine’s answer for the end of life—which is to try to fix the unfixable, prevent the inevitable—are disastrous. This is his central argument, an argument which I will discuss in a moment.

While I was reading Being Mortal, I began noticing something: The topic of death seems to be everywhere. Not only the violent and senseless deaths that shame our headlines on an almost daily basis, not only the far-away wars and tragic deaths of so many in so many parts of the world, but everyday, ordinary, inevitable death—the kind the vast majority of people will one day face. For example, I was reading a Writers’ Digest interview with the famous editor Terry McDonell, who was the editor or managing editor of many magazines—think Rolling Stone, Esquire, Outside, and Sports Illustrated, among others. He was elected, four years ago, to the Magazine Editors’ Hall of Fame. Some of the luminaries he edited include Hunter S. Thompson, Jim Harrison, Richard Ford, Richard Price, George Plimpton, Peter Matthiessen, Jimmy Buffett, and many others. So when I began the interview, I expected talk abaout writing and writers (there was some, eventually). But it unnerved me to read this about his new book, The Accidental Life: An Editor’s Notes on Writing and Writers:

The book is about death. Aging is difficult for everyone. It’s especially difficult for writers because they’re so sensitive to it: to their talents, and to anything that diminishes them.

McDonell book

Wow. Another book about death. But it makes sense: We Boomers are marching into our 70s already, and Boomers are nothing if not interested in our own experiences: having them, talking about them, writing about them, sharing our angst about them, and, if at all possible, making some money off them. So Death, be not proud. We’re not talking about You a lot these days because You are so hot, but because You’re our next Big Thing.

Being Mortal

Dr. Gawande’s book grabbed me by the lapels and shook me (well, okay, I don’t wear suits anymore, so no lapels). One of the points he asserts repeatedly is that the way we die is changing. A hundred years ago, and still today in some corners of the world, death came early and often suddenly. Now, particularly in developed countries and countries where industrialization is underway, scientific medicine and medical care have enabled much longer life spans and made the recovery from accidents and major sudden illnesses much more likely. As a species, we are living longer. Now, death is less often a matter of a sudden catastrophe, but rather of a slow accumulation of small breakdowns, which add up like the frailties of an old car, until there is no reversing them.

He discusses how people adjust and adjust and adjust to these small (and sometimes not so small, but treatable) breakdowns. Aging, in this description, is a process that, over many years, gradually narrows the range of experiences and activities one considers necessary for “the good life.” For instance, thirty years ago, going out for a evening of dinner, drinks, and dancing or a concert or a ball game, was a key part of how I defined living well. Now, it’s lunch with my wife at a quiet restaurant.

A man gets an inner ear infection, which leaves him prone to dizzy spells. He puts up with them, gets used to them, learns to accommodate to them, and eventually gives up doing some of the things he used to value, like dancing or running or climbing a ladder to paint his own house.

And as the range of activities slowly narrows, sometimes imperceptibly, the things that are important also begin to change. I now enjoy these lunches with my wife every bit as much as I once enjoyed my evenings out with friends. Where I used to value action and excitement in trendy venues, now I value easy conversation in comfortable settings. Gawande, in a number of poignant vignettes, shows how, as death nears, people tend to focus in more closely on the people they love and the few activities they value and can do comfortably. Meaning becomes more and more important.

The doctor writes about his father’s dying. A vibrant, robust man whose early goal was not to let the tumor in his spine stop him from the many social, charitable, and athletic activities he cherished. But by the end, he was as satisfied studying photos of his grandchildren as he’d once been practicing medicine or playing tennis or building a university campus in his home town in India. At each stage of the progression of the disease, Gawande’s father fought to keep his previous level of activity until he realized he could not, and was forced to contemplate the new reality. Once he accepted what he’d lost–which did not come easily, but did come–and identified what he still valued that he could still do, once he set his sights on what mattered most to him in the changed circumstances of his illness, he relaxed and his usual buoyant spirit returned, until the crisis began the process all over again.

What is Needed for This to Happen?

Movingly, Gawande discusses how miserably the medical approach to dying—or rather, he notes, to preventing dying—fails to help people to this kind of end, one in which they can realize what remains valuable and can focus on that rather than trying to stop the inevitable train wreck. What is needed, he suggests, is for doctors—and equally, for patients and their families–to discuss four very simple but achingly important questions:

  • How do people understand this thing they are facing (the disease or condition that threatens their life)? What does the condition mean to them—not what is to be done or even what they want done about it, but what its meaning injects into their life?
  • What are their fears at this point in time? What are they afraid of losing now, in the coming days, weeks, months?
  • What are the dying person’s goals? Of the things they fear losing, what can be let go and what are the most important to hang on to as long as possible?
  • What will you need now, today and in the next few days and weeks, to make holding on to those precious things possible for this period of time?

You can well imagine how difficult this conversation will be. Gawande says that he found it sometimes too intimidating even for him, the surgeon. And you can also imagine that these questions will need to be asked and this discussion held many times as a person moves through the aging and dying process.

Caring hands

Consider a young mother, newly diagnosed with metastatic cancer, who wanted to fight the disease “every way I can.” Her husband and her doctor helped her do that, through surgeries and radiation and round after round of trail-and-error chemotherapies. As long as she could keep working and participating in her life, she continued fighting, hanging on to her goal of defeating the cancer and fighting to hang on to what she valued, her work, her lifestyle, her activities.

After many months, she was exhausted, barely able to participate in her family’s life. The therapies were failing, her cancer advancing. Her oncologist, understanding her goal, offered an experimental treatment.

She and her husband held their usual discussion, centered around the four questions. Painstakingly, gingerly, they’d done this each time a new treatment had been offered. She realized this time that she no longer wanted to fight, that fighting now meant long stay in bed, the sickness of chemotherapy, confusion and mental loss. Instead of fighting, she wanted to be free enough of pain and of the drugged-up grogginess caused by the pain that she could sit with her family at dinner even when she couldn’t eat, could help her kids do their homework, could watch TV with them in the evening.

What she now feared losing most was no longer her lifestyle, or even her life—it was losing what time she had left with her husband and children. And so, arrangements were made to help her—now, today, not in the future—get to that goal. That very afternoon, her husband rented a hospital bed for the living room and placed the TV where she and the kids could cuddle and watch their shows. He called an at-home hospice service, and a nurse came and set up routines to maximize her comfort and rest when she was home alone, and ensure her ability to be with the children and her husband when they were home. The hospice nurses not only helped find the right mix of medications to help her stay awake when the kids were home, they taught her things she could do to help herself safely, such as getting to the bathroom without falling. Her life had shrunk down to a very narrow set of activities, but they were activities that meant the world to her now, the activities spending “alive time” with her family rather than enduring treatments with little chance of saving her and sleeping away her remaining time in a hospital bed far from home.

Gawande argues that such an ending to life, focused on achieving still-meaningful personal goals, regardless how small they may be and regardless what else is lost as the end approaches, means the dying person retains a measure of autonomy, choosing what matters, and with those choices, dignity. And he asks us to consider that, as death approaches, we should shift our efforts away from sacrificing the present for the hope of living longer into the future, and instead should sacrifice the future and actually live in the present. He thinks this change in orientation is the key to holding on to and experiencing what is most precious as far as possible at the end. To die well, in other words, we should leave the future and come home to now.

I think we’ve heard that message before . . .

Author: Bill Percy

An Idaho and Minnesota writer and psychologist, Bill has been writing fiction and non-fiction for 40 years. His 2014 novel, "Climbing the Coliseum," wass a Finalist for the Foreword Reviews' Book of the Year Award in general fiction. His second novel, "Nobody's Safe Here," was published by Black Rose Writing in December, 2016. Check out Bill's website at www.BillPercyBooks.com.

4 thoughts on “4 Questions for the End of Life”

  1. These four questions are important to ask and try to answer throughout our later years, whether dying is visible to us or not. They seem, to me, to be vital to all of us as the concept of our dying becomes real…I think…

    1. You’re hitting the nail on the head with your words, “. . . as the concept of our dying becomes real . . .” When we were younger, dying was pretty much a “concept,” an idea about the future. Now, though, or maybe any time a major illness strikes, it morphs from an idea into a lived reality. Thanks for the thought!

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