Being Mortal: Medicine and What Matters in the End

by Atul Gawande

Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things.

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.

If you cannot, without assistance, use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk—the eight “Activities of Daily Living”—then you lack the capacity for basic physical independence. If you cannot shop for yourself, prepare your own food, maintain your housekeeping, do your laundry, manage your medications, make phone calls, travel on your own, and handle your finances—the eight “Independent Activities of Daily Living”—then you lack the capacity to live safely on your own.

In the past, surviving into old age was uncommon, and those who did survive served a special purpose as guardians of tradition, knowledge, and history. They tended to maintain their status and authority as heads of the household until death. In many societies, elders not only commanded respect and obedience but also led sacred rites and wielded political power.

Given the opportunity, both parents and children saw separation as a form of freedom. Whenever the elderly have had the financial means, they have chosen what social scientists have called “intimacy at a distance.”

Modernization did not demote the elderly. It demoted the family. It gave people—the young and the old—a way of life with more liberty and control, including the liberty to be less beholden to other generations. The veneration of elders may be gone, but not because it has been replaced by veneration of youth. It’s been replaced by veneration of the independent self.

The progress of medicine and public health has been an incredible boon—people get to live longer, healthier, more productive lives than ever before. 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. 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. Then, when our bodies fail to live up to this fantasy, we feel as if we somehow have something to apologize for. 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. In a sense, the advances of modern medicine have given us two revolutions: we’ve undergone a biological transformation of the course of our lives and also a cultural transformation of how we think about that course.

Inside skin cells, the mechanisms that clear out waste products slowly break down and the residue coalesces into a clot of gooey yellow-brown pigment known as lipofuscin. These are the age spots we see in skin. When lipofuscin accumulates in sweat glands, the sweat glands cannot function, which helps explain why we become so susceptible to heat stroke and heat exhaustion in old age.

The job of any doctor, Bludau later told me, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world.

“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.”

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 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. Last-minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home.

Today, assisted living is regarded as something of an intermediate station between independent living and life in a nursing home. But when Keren Brown Wilson, one of the originators of the concept, built her first assisted living home for the aged in Oregon in the 1980s, she was trying to create a place that would eliminate the need for nursing homes altogether.

Studies find that as people grow older they interact with fewer people and concentrate more on spending time with family and established friends. They focus on being rather than doing and on the present more than the future.

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? Why do we wait until we’re old? The common view was that these lessons are hard to learn. Living is a kind of skill. The calm and wisdom of old age are achieved over time.

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

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.

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. But if you do, it is not. Loyalty, said Royce, “solves the paradox of our ordinary existence by showing us outside of ourselves the cause which is to be served, and inside of ourselves the will which delights to do this service, and which is not thwarted but enriched and expressed in such service.”

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. And we have a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile.

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. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days. For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. 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. That experiment has failed.

The amount of freedom you have in your life is not the measure of the worth of your life. Just as safety is an empty and even self-defeating goal to live for, so ultimately is autonomy.

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. This is the very marrow of being human. As Dworkin wrote in his remarkable 1986 essay on the subject, “The value of autonomy … lies in the scheme of responsibility it creates: autonomy makes each of us responsible for shaping his own life according to some coherent and distinctive sense of character, conviction, and interest. It allows us to lead our own lives rather than be led along them, so that each of us can be, to the extent such a scheme of rights can make this possible, what he has made himself.”

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. Sickness and old age make the struggle hard enough.

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. 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—to make choices and sustain connections to others according to their own priorities. In modern society, we have come to assume that debility and dependence rule out such autonomy.

Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a medieval version published in Latin in 1415 was reprinted in more than a hundred editions across Europe. People believed death should be accepted stoically, without fear or self-pity or hope for anything more than the forgiveness of God. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.

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.

We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.” 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. Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and escape a warehoused oblivion that few really want.

Ezekiel and Linda Emanuel, on the different kinds of relationships that we, as budding new clinicians, might have with our patients. The oldest, most traditional kind is a paternalistic relationship—we are medical authorities aiming to ensure that patients receive what we believe best for them. We have the knowledge and experience. We make the critical choices.

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.

In truth, neither type is quite what people desire. We want information and control, but we also want guidance. 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?”

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

Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength.

“An inconsistency is built into the design of our minds,” Kahneman observes. “We have strong preferences about the duration of our experiences of pain and pleasure. We want pain to be brief and pleasure to last. But our memory … has evolved to represent the most intense moment of an episode of pain or pleasure (the peak) and the feelings when the episode was at its end. A memory that neglects duration will not serve our preference for long pleasure and short pains.” When our time is limited and we are uncertain about how best to serve our priorities, we are forced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain pleasures can make enduring suffering worthwhile. The peaks are important, and so is the ending.

“Assisted suicide” has become the term of art, though advocates prefer the euphemism “death with dignity.”

Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.