But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it.
was how we treat our old and frail—leaving them to a life alone or isolating them in a series of anonymous facilities, their last conscious moments spent with nurses and doctors who barely knew their names.
But in my grandfather’s premodern world, how he wanted to live was his choice, and the family’s role was to make it possible.
It was understood that parents would just keep living in their home, assisted by one or more of the children they’d raised.
So much respect accrued to the elderly that people used to pretend to be older than they were, not younger, when giving their age.
one time, we might have turned to an old-timer to explain the world. Now we consult Google, and if we have any trouble with the computer we ask a teenager.
The radical concept of “retirement” started to take shape.
The hardest substance in the human body is the white enamel of the teeth.
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.
When we study aging what we are trying to understand is not so much a natural process as an unnatural one.
It turns out that inheritance has surprisingly little influence on longevity.
Gavrilov argues that, within the parameters established by our genes, that’s exactly how human beings appear to work. We have an extra kidney, an extra lung, an extra gonad, extra teeth.
There is, he told me, “no single, common cellular mechanism to the aging process.” Our bodies accumulate lipofuscin and oxygen free-radical damage and random DNA mutations and numerous other microcellular problems. The process is gradual and unrelenting.
As medical progress has extended our lives, the result has been what’s called the “rectangularization” of survival.
Ultimately, the average American spends a year or more of old age disabled and living in a nursing home (at more than five times the yearly cost of independent living),
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.
“Old age is a continuous series of losses.”
A few years ago, I read about the case of Harry Truman, an eighty-three-year-old man who, in March 1980, refused to budge from his home at the foot of Mount Saint Helens near Olympia, Washington, when the volcano began to steam and rumble.
HOW DID WE wind up in a world where the only choices for the very old seem to be either going down with the volcano or yielding all control over our lives?
In the middle part of the twentieth century, medicine was undergoing a rapid and historic transformation. Before that time, if you fell seriously ill, doctors usually tended to you in your own bed. The function of hospitals was mainly custodial.
As hospitals sprang up, they became a comparatively more attractive place to put the infirm. That was finally what
brought the poorhouses to empty out.
That was the beginning of the modern nursing home. They were never created to help people facing dependency in old age. They were created to clear out hospital beds—which is why they were called “nursing” homes.
This place where half of us will typically spend a year or more of our lives was never truly made for us.
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.
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.
This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—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.
The findings raised a further question. If we shift as we age toward appreciating everyday pleasures and relationships rather than toward achieving, having, and getting, and if we find this more fulfilling, then why do we take so long to do it?
how we seek to spend our time may depend on how much time we perceive ourselves to have.
Wilson pointed out angrily that even children are permitted to take more risks than the elderly. They at least get to have swings and jungle gyms.
They tout their computer lab, their exercise center, and their trips to concerts and museums—features that speak much more to what a middle-aged person desires for a parent than to what the parent does.
Above all, they sell themselves as safe places. They almost never sell themselves as places that put a person’s choices about how he or she wants to live first and foremost.
“We want autonomy for ourselves and safety for those we love.”
“It’s the rare child who is able to think, ‘Is this place what Mom would want or like or need?’
It’s more like they’re seeing it through their own lens.” The child asks, “Is this a place I would be comfortable leaving Mom?”
“Culture has tremendous inertia,”
Culture strangles innovation in the crib.”
Their study found that the number of prescriptions required per resident fell to half that of the control nursing home.
The total drug costs fell to just 38 percent of the comparison facility. Deaths fell 15 percent.
“I believe that the difference in death rates can be traced to the fundamental human need for a reason to live.”
The birds were drawing him out. For Thomas, it was the perfect demonstration of his theory about what living things provide. In place of boredom, they offer spontaneity. In place of loneliness, they offer companionship. In place of helplessness, they offer a chance to take care of another being.
The most important finding was that it is possible to provide them with reasons to live, period. Even residents with dementia so severe that they had lost the ability to grasp much of what was going on could experience a life with greater meaning and pleasure and satisfaction.
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.
Medical professionals concentrate on repair of health, not sustenance of the soul.
It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.
The battle of being mortal 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.
Thomas flipped the model. He took the control away from the managers and gave it to the frontline caregivers.
As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world—
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
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.
As for last words, they hardly seem to exist anymore. Technology can sustain our organs until we are well past the point of awareness and coherence.
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.
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.
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.
The lesson seems almost Zen: you live longer only when you stop trying to live longer.
All-out treatment, we tell the incurably ill, is a train you can get off at any time—just say when. But for most patients and their families we are asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve.
Five of the ten fastest-growing economies in the world are in Africa.
The Emanuels described a third type of doctor-patient relationship, which they called “interpretive.”
The best way to convey meaning is to tell people what the information means to you yourself, he said. And he gave me three words to use to do that. “I am worried,” I told Douglass.
This is what it means to have autonomy—you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.
Courage is strength in the face of knowledge of what is to be feared or hoped.
Studies in numerous settings have confirmed the Peak-End rule and our neglect of duration of suffering.
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.
Unlike your experiencing self—which is absorbed in the moment—your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works out as a whole.
Courage is the strength to recognize both realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. 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.
But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end.
Assisted living is far harder than assisted death, but its possibilities are far greater, as well.
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.
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?