Being Mortal: Medicine and What Matters in the End

by Atul Gawande

Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset. And then a new question arises: If independence is what we live for, what do we do when it can no longer be sustained?

Yet traveling along these altered paths, we regard living in the downhill stretches with a kind of embarrassment. We need help, often for long periods of time, and regard that as a weakness rather than as the new normal and expected state of affairs.

the preponderance of the evidence is against the idea that our life spans are programmed into us. Remember

asked Silverstone whether gerontologists have discerned any particular, reproducible pathway to aging. “No,” he said. “We just fall apart.”

And partly, whether we admit it or not, a lot of doctors don’t like taking care of the elderly.

The single most serious threat she faced was not the lung nodule or the back pain. It was falling. Each year, about 350,000 Americans fall and break a hip. Of those, 40 percent end up in a nursing home, and 20 percent are never able to walk again. The three primary risk factors for falling are poor balance, taking more than four prescription medications, and muscle weakness. Elderly people without these risk factors have a 12 percent chance of falling in a year. Those with all three risk factors have almost a 100 percent chance.

But the patients who had seen a geriatrics team were a quarter less likely to become disabled and half as likely to develop depression. They were 40 percent less likely to require home health services.

Instead, it was just geriatrics. The geriatric teams weren’t doing lung biopsies or back surgery or insertion of automatic defrailers. What they did was to simplify medications. They saw that arthritis was controlled. They made sure toenails were trimmed and meals were square. They looked for worrisome signs of isolation and had a social worker check that the patient’s home was safe.

“Old age is a continuous series of losses.”

“Old age is not a battle. Old age is a massacre.”

a nursing home, the official aim of the institution is caring, but the idea of caring that had evolved didn’t bear any meaningful resemblance to what Alice would call living. She was hardly alone in feeling this way.

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.

but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.

Your chances of avoiding the nursing home are directly related to the number of children you have, and, according to what little research has been done, having at least one daughter seems to be crucial to the amount of help you will receive.

postural hypotension—a condition of old age in which the body loses its ability to maintain adequate blood pressure for brain function during changes in position like standing up from sitting. The

Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial. Lou was on numerous medications, which had to be tracked and sorted and refilled. He had a small platoon of specialists he had to visit—at times, nearly weekly—and they were forever scheduling laboratory tests, imaging studies, and visits to other specialists. He had an electronic alert system for falls, which had to be tested monthly. And there was almost no help for Shelley. The burdens for today’s caregiver have actually increased from what they would have been a century ago. Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner.

It seemed as if, once aging led to debility, it was impossible for anyone to be happy.

how we seek to spend our time may depend on how much time we perceive ourselves to have. When

you are young and healthy, you believe you will live forever.

postural hypotension

So this is the way it unfolds. In the absence of what people like my grandfather could count on—a vast extended family constantly on hand to let him make his own choices—our elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.

Royce wanted to understand why simply existing—why being merely housed and fed and safe and alive—seems empty and meaningless to us. What more is it that we need in order to feel that life is worthwhile? The answer, he believed, is that we all seek a cause beyond ourselves. This was, to him, an intrinsic human need. The cause could be large (family, country, principle) or small (a building project, the care of a pet). The important thing was that, in ascribing value to the cause and seeing it as worth making sacrifices for, we give our lives meaning.

but we all require devotion to something more than ourselves for our lives to be endurable.

As our time winds down, we all seek comfort in simple pleasures—companionship, everyday routines, the taste of good food, the warmth of sunlight on our

“Oh thank God I can go myself to the bathroom,” Makover told me. “You would think it’s nothing. You’re young. You’ll understand when you’re older, but the best thing in your life is when you can go yourself to the bathroom.”

One is autonomy as free action—living completely independently, free of coercion and limitation. This kind of freedom is a common battle cry. But it is, as Bill Thomas came to realize on his homestead in upstate New York, a fantasy—he and his wife, Jude, had two children born with severe disabilities requiring lifelong care, and someday, illness, old age, or some other mishap will leave him in need of assistance, too. Our lives are inherently dependent on others and subject to forces and circumstances well beyond our control. Having more freedom seems better than having less. But to what end? The amount of freedom you have in your life is not the measure of the worth of your life. Just

Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives.

All we ask is to be allowed to remain the writers of our own story. That 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.

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.

Yet it needed to feel to families, residents, and the people who worked there like a home, not an institution.

But it was also apparent that he was able to live in a way that made him feel that he still had a place in this world. They still wanted him around. And that raised the possibility that the same could be the case for any of us.

In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions.

People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.

This is me

For most people, death comes only after long medical struggle with an ultimately unstoppable condition—advanced cancer, dementia, Parkinson’s disease, progressive organ failure (most commonly the heart, followed in frequency by lungs, kidneys, liver), or else just the accumulating debilities of very old age.

Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much

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’s 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? There’s a school of thought that says the problem is the absence of market forces. If terminal patients—rather than insurance companies or the government—had to pay the added costs for the treatments they chose instead of hospice, they would take the trade-offs into account more. Terminal cancer patients wouldn’t pay $80,000 for drugs, and end-stage heart failure patients wouldn’t pay $50,000 dollars for defibrillators offering at best a few months extra survival. But this argument ignores an important factor: the people who opt fo...

But the third who did have discussions were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive care unit. Most of them enrolled in hospice. They suffered less, were physically more capable, and were better able, for a longer period, to interact with others. In addition, six months after these patients died, their family members were markedly less likely to experience persistent major depression. 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 lesson seems almost Zen: you live longer only when you

Do you want to be resuscitated if your heart stops? 2. Do you want aggressive treatments such as intubation and mechanical ventilation? 3. Do you want antibiotics? 4. Do you want tube or intravenous feeding if you can’t eat on your own?

No. Not for me!

When wishes aren’t clear, Thompson said, “families have also become much more receptive to having the discussion.” The

when we start needing oxygen at home,

People die only once. They have no experience to draw on. They

SARA MONOPOLI HAD had enough discussions to let her family and her oncologist know that she did not want hospitals or ICUs at the end—but not enough to have learned how to achieve her goal.

The team prescribed a small dose of morphine, which immediately eased her breathing. Her family saw how much her suffering diminished, and suddenly they didn’t want any more suffering. The next morning, they were the ones to hold back the medical team.

In the third stage, as a country’s income climbs to the highest levels, people have the means to become concerned about the quality of their lives, even in sickness,

The second type of relationship the authors termed “informative.” It’s the opposite of the paternalistic relationship. We tell you the facts and figures. The rest is up to you. “Here’s what the red pill does, and here’s what the blue pill does,” we would say. “Which one do you want?” It’s a retail relationship. The doctor is the technical expert. The patient is the consumer. The job of doctors is to supply up-to-date knowledge and skills. The job of patients is to supply the decisions. This is the increasingly common way for doctors to be, and it tends to drive us to become ever more specialized.

The Emanuels described a third type of doctor-patient relationship, which they called “interpretive.” Here the doctor’s role is to help patients determine what they want. Interpretive doctors ask,

“What is most important to you? What are your worries?” Then, when they know your answers, they tell you about the red pill and the blue pill and which one would most help you achieve your priorities. Experts have come to call this shared decision making. It seemed to us medical students a nice way to work with patients as physicians. But it seemed almost entirely theoretical. Certainly, to the larger medical community, the idea that most doctors would play this kind of role for patients seemed far-fetched at the time. (Surgeons? “Interpretive?” Ha!) I didn’t hear clinicians talk about the idea again and largely forgot about it. The choices in training seemed to be between the more paternalistic style and the more informative one. Yet, less than two decades later, here we were with my father, in a neurosurgeon’s office in Cleveland, Ohio, talking about MRI images showing a giant and deadly tumor growing in his spinal cord, and this other kind of doctor—one willing to genuinely share decision making—was precisely what we found. Benzel

She was starting to grasp that this is what the closing phase of a modern life often looks like—a mounting series of crises from which medicine can offer only brief and temporary rescue. She

She was going to take a break from her chemotherapy, at least for now. She didn’t want to plan her life around the infusions of chemotherapy and the nausea and the painful rashes and the hours of the day she’d spend in bed with fatigue. She wanted to be a wife/mother/neighbor/friend again. She decided, like my father, to take what time would give her, however long that might be.