Being Mortal: Medicine and What Matters in the End

by Atul Gawande

We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win. Hope is not a plan, but hope is our plan.

But that night and the next morning her breathing only grew more labored. “I can’t think of a single funny thing to say,” Emily told Sara as their parents looked on. “Neither can I,” Sara murmured. Only later did the family realize that those were the last words they would ever hear from her.

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.

Two-thirds of the terminal cancer patients in the Coping with Cancer study 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.

In other words, 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.

The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer.

In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.

And curiously, for some conditions, hospice care seemed to extend survival. Those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.

Four questions

The words you use matter. According to palliative specialists, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like you’re distancing yourself. You should say, “I wish things were different.” You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”

According to Block, about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.

Through the next night, Rich recalled, “there was this awful groaning.” There is no prettifying death. “Whether it was with inhaling or exhaling, I don’t remember, but it was horrible, horrible, horrible to listen to.”

We witnessed for ourselves the consequences of living for the best possible day today instead of sacrificing time now for time later.

Soon he even began hosting parties at our house again. He found that in the narrow space of possibility that his awful tumor had left for him there was still room to live.

At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality—the courage to seek out the truth of what is to be feared and what is to be hoped.

But even more daunting is the second kind of courage—the courage to act on the truth we find.

But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most.

I stepped back and asked the questions I’d asked my father: What were her biggest fears and concerns? What goals were most important to her? What trade-offs was she willing to make, and what ones was she not?

The brain gives us two ways to evaluate experiences like suffering—there is how we apprehend such experiences in the moment and how we look at them afterward—and the two ways are deeply contradictory.

In the end, people don’t view their life as merely the average of all of its moments—which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence.

A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.

Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. 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.

Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.

“What are you thinking?” I asked. “I’m thinking how to not prolong the process of dying. This—this food prolongs the process.” My mom didn’t like hearing this.

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.

Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?