Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. I knew these truths abstractly, but I didn’t know them concretely—that they could be truths not just for everyone but also for this person right in front of me, for this person I was responsible for.
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There’s no escaping the tragedy of life, which is that we are all aging from the day we are born.
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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.
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.
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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.
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Royce had no sympathy for the individualist view. “The selfish we had always with us,” he wrote. “But the divine right to be selfish was never more ingeniously defended.” In fact, he argued, human beings need loyalty. It does not necessarily produce happiness, and can even be painful, but we all require devotion to something more than ourselves for our lives to be endurable. Without it, we have only our desires to guide us, and they are fleeting, capricious, and insatiable. They provide, ultimately, only torment. “By nature, I am a sort of meeting place of countless streams of ancestral tendency. From moment to moment … I am a collection of impulses,” Royce observed. “We cannot see the inner light. Let us try the outer one.”
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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. What I learned from Lou—and from Ruth Barrett, Anne Braveman, Rita Kahn, and lots of others—was that it is very much possible.
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Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.
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The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.
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More often, these days, medicine seems to supply neither Custers nor Lees. 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.
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Her father and her sister still thought that she might rally. But when the others had stepped out of the room, Rich knelt down weeping beside Sara and whispered in her ear. “It’s okay to let go,” he said. “You don’t have to fight anymore. I will see you soon.”
Later that morning, her breathing changed, slowing. Rich said, “Sara just kind of startled. She let a long breath out. Then she just stopped.”
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Otherwise, he kept on driving, playing tennis, doing surgery, living life as he had been. He and his neurosurgeon knew what was coming. But they also knew what mattered to him and left well enough alone. This was, I remember thinking, just the way I ought to make decisions with my own patients—the way we all ought to in medicine.
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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?” 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.
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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 was experiencing what I have come to think of as the ODTAA syndrome: the syndrome of One Damn Thing After Another. It does not have a totally predictable path. The pauses between crises can vary. But after a certain point, the direction of travel becomes clear.
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But the reader comes to a possible one: Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength.
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. Such courage is difficult enough. We have many reasons to shrink from it. But even more daunting is the second kind of courage—the courage to act on the truth we find. The problem is that the wise course is so frequently unclear. For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen, it is hard to know what to do. 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.
* * *
So 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?
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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 seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves. 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. That is profoundly affected by how things ultimately turn out. Why would a football fan let a few flubbed minutes at the end of the game ruin three hours of bliss? Because a football game is a story. And in stories, endings matter.
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I AM LEERY of suggesting the idea that endings are controllable. No one ever really has control. Physics and biology and accident ultimately have their way in our lives. But the point is that we are not helpless either. 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.
Inevitably, the question arises of how far those possibilities should extend at the very end—whether the logic of sustaining people’s autonomy and control requires helping them to accelerate their own demise when they wish to
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We are running up against the difficulty of maintaining a coherent philosophical distinction between giving people the right to stop external or artificial processes that prolong their lives and giving them the right to stop the natural, internal processes that do so.
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At root, the debate is about what mistakes we fear most—the mistake of prolonging suffering or the mistake of shortening valued life. We stop the healthy from committing suicide because we recognize that their psychic suffering is often temporary. We believe that, with help, the remembering self will later see matters differently than the experiencing self—and indeed only a minority of people saved from suicide make a repeated attempt; the vast majority eventually report being glad to be alive. But for the terminally ill who face suffering that we know will increase, only the stonehearted can be unsympathetic.
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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. They want to end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.
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When I was a child, the lessons my father taught me had been about perseverance: never to accept limitations that stood in my way. As an adult watching him in his final years, I also saw how to come to terms with limits that couldn’t simply be wished away. When to shift from pushing against limits to making the best of them is not often readily apparent. But it is clear that there are times when the cost of pushing exceeds its value. Helping my father through the struggle to define that moment was simultaneously among the most painful and most privileged experiences of my life.
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Part of the way my father handled the limits he faced was by looking at them without illusion. Though his circumstances sometimes got him down, he never pretended they were better than they were. He always understood that life is short and one’s place in the world is small. But he also saw himself as a link in a chain of history. Floating on that swollen river, I could not help sensing the hands of the many generations connected across time. In bringing us there, my father had helped us see that he was part of a story going back thousands of years and so were we.
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The end.
We were together. I forget the rest. 