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by
Atul Gawande
Read between
March 1 - March 9, 2020
Outside the room, after he signed the form, the son took me aside. His mother had died on a ventilator in intensive care, and at the time his father had said he did not want anything like that to happen to him. But now he was adamant about doing “everything.”
This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing.
Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.
The lines of power between the generations have been renegotiated, and not in the way it is sometimes believed. The aged did not lose status and control so much as share it. Modernization did not demote the elderly. It demoted the family.
The doctor did some tests. He found that she had thinning bones and recommended calcium. He fiddled with her medications and gave her some new prescriptions. But the truth was he didn’t know what to do.
Old age is not a diagnosis. There is always some final proximate cause that gets written down on the death certificate—respiratory failure, cardiac arrest. But in truth no single disease leads to the end; the culprit is just the accumulated crumbling of one’s bodily systems while medicine carries out its maintenance measures and patch jobs.
We’re always trotting out some story of a ninety-seven-year-old who runs marathons, as if such cases were not miracles of biological luck but reasonable expectations for all.
Those of us in medicine don’t help, for we often regard the patient on the downhill as uninteresting unless he or she has a discrete problem we can fix.
This is normal. Although the processes can be slowed—diet and physical activity can make a difference—they cannot be stopped. Our functional lung capacity decreases. Our bowels slow down. Our glands stop functioning. Even our brains shrink: at the age of thirty, the brain is a three-pound organ that barely fits inside the skull; by our seventies, gray-matter loss leaves almost an inch of spare room. That’s why elderly people like my grandfather are so much more prone to cerebral bleeding after a blow to the head—the brain actually rattles around inside.
WHY WE AGE is the subject of vigorous debate. The classical view is that aging happens because of random wear and tear. The newest view holds that aging is more orderly and genetically programmed.
So today, with our average life span in much of the world climbing past eighty years, we are already oddities living well beyond our appointed time. When we study aging what we are trying to understand is not so much a natural process as an unnatural one.
If our genes explain less than we imagined, the classical wear-and-tear model may explain more than we knew. Leonid Gavrilov, a researcher at the University of Chicago, argues that human beings fail the way all complex systems fail: randomly and gradually.
I asked Silverstone whether gerontologists have discerned any particular, reproducible pathway to aging. “No,” he said. “We just fall apart.”
Give us a disease, and we can do something about it. But give us an elderly woman with high blood pressure, arthritic knees, and various other ailments besides—an elderly woman at risk of losing the life she enjoys—and we hardly know what to do and often only make matters worse.
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.
It is not death that the very old tell me they fear. It is what happens short of death—losing their hearing, their memory, their best friends, their way of life. As Felix put it to me, “Old age is a continuous series of losses.” Philip Roth put it more bitterly in his novel Everyman: “Old age is not a battle. Old age is a massacre.”
As fewer of us are struck dead out of the blue, most of us will spend significant periods of our lives too reduced and debilitated to live independently.
In the horrible places, the battle for control escalates until you get tied down or locked into your Geri-chair or chemically subdued with psychotropic medications. In the nice ones, a staff member cracks a joke, wags an affectionate finger, and takes your brownie stash away. In almost none does anyone sit down with you and try to figure out what living a life really means to you under the circumstances, let alone help you make a home where that life becomes possible.
In the main, the family has remained the primary alternative. 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.
Three years later, however, he had his first fall—that harbinger of unstoppable trouble.
Fifteen years later, when she was a scholar, the experience led her to formulate a hypothesis: how we seek to spend our time may depend on how much time we perceive ourselves to have.
When, as the researchers put it, “life’s fragility is primed,” people’s goals and motives in their everyday lives shift completely. It’s perspective, not age, that matters most.
He reminded them of the Three Plagues, of the fact that people in nursing homes are dying of boredom, loneliness, and helplessness and that they wanted to find the cure for these afflictions.
“People who we had believed weren’t able to speak started speaking,” Thomas said. “People who had been completely withdrawn and nonambulatory started coming to the nurses’ station and saying, ‘I’ll take the dog for a walk.’” All the parakeets were adopted and named by the residents. The lights turned back on in people’s eyes.
The study couldn’t say why. But Thomas thought he could. “I believe that the difference in death rates can be traced to the fundamental human need for a reason to live.”
The most important finding of Thomas’s experiment wasn’t that having a reason to live could reduce death rates for the disabled elderly. The most important finding was that it is possible to provide them with reasons to live, period.
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?
Royce called this dedication to a cause beyond oneself loyalty. He regarded it as the opposite of individualism.
The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror.
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 faces. We become less interested in the rewards of achieving and accumulating, and more interested in the rewards of simply being. Yet while we may feel less ambitious, we also become concerned for our legacy.
The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul.
“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.”
She told me that in February she would turn one hundred. “That’s amazing,” I said. “That’s old,” she replied. I told her my grandfather lived to almost one hundred and ten. “God forbid,” she said.
There are different concepts of autonomy. 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.
The late, great philosopher Ronald Dworkin recognized that there is a second, more compelling sense of autonomy. Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives.
The terror of sickness and old age is not merely the terror of the losses one is forced to endure but also the terror of the isolation.
Saras story followed by the question What do you do now?
THIS IS THE moment in Sara’s story that poses our difficult question, one for everyone living in our era of modern medicine: What do we want Sara and her doctors to do now?
For a patient whose cancer proves fatal, though, the cost curve is U-shaped, rising toward the end—to an average of $94,000 during the last year of life with a metastatic breast cancer.
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.
You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said good-bye or “It’s okay” or “I’m sorry” or “I love you.”
Consider how our presidents died before the modern era. George Washington developed a throat infection at home on December 13, 1799, that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to strokes and died within two days. Rutherford Hayes had a heart attack and died three days later.
These days, swift catastrophic illness is the exception. 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. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost.
It’s worth pausing to consider what had just happened. Step by step, Sara ended up on a fourth round of chemotherapy, one with a minuscule likelihood of altering the course of her disease and a great likelihood of causing debilitating side effects. An opportunity to prepare for the inevitable was forgone. And it all happened because of an assuredly normal circumstance: a patient and family unready to confront the reality of her disease.
A study led by the sociologist Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive and then followed the patients. Sixty-three percent of doctors overestimated their patient’s survival time. Just 17 percent underestimated it. The average estimate was 530 percent too high. And the better the doctors knew their patients, the more likely they were to err.
You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught. When you have a patient like Sara Monopoli, the last thing you want to do is grapple with the truth.
After one of her chemotherapies seemed to shrink the thyroid cancer slightly, I even raised with her the possibility that an experimental therapy could work against both her cancers, which was sheer fantasy. Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes.
