The bioethicist Baruch Brody suggests that people are either alive, dead, or in a condition “during which they do not fully belong to either.…Death is a fuzzy set.” There are philosophers who claim that the boundaries of death are actually so vague that it is not really possible to define it. (In summarizing the broad implications of a world without a precise definition of death, philosopher David DeGrazia writes, “Society may then select, among admissible standards, whichever is most attractive for practical purposes.” The very definition of slippery slope.)
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Most people say a good death is timely. But this is not a word we all define the same way. At what age is it time to die? We assume that a good life must be a long life. But I have seen some really bad long lives, and known happy, fulfilled people who lived fairly short ones. The quality of a life doesn’t depend on its length; we aren’t promised anything when we get here.
“What madness it is to expect to die of that failing of our powers brought on by extreme old age,” wrote Montaigne, poking about in his cabbages. “We call that death, alone, a natural death, as if it were unnatural to find a man breaking his neck in a fall, engulfed in a shipwreck, surprised by a plague or pleurisy,” he wrote. He was forty-seven then, a retired lawyer living in the country, already an old man for his time. “[P]erhaps we ought, rather, to call natural anything which is generic, common to all and universal.” Montaigne died twelve years later, of inflamed tonsils.
While we may have the great good luck to live with antibiotics, vaccinations, and mandatory seat belt laws, people still break their necks. People drown; plagues abound. We can be angry about lousy lifestyle choices or a lack of primary health care or the costs of good nursing at the end of our lives and still see that death is natural. If someone dies suddenly, is it a bad death? Even with the best of care, people have heart attacks and strokes. People do fall down and crack their heads open. Death is a literal part of our nature. We can be angry about our nature, but it won’t get us very far.
Early spring. I am sitting on the couch beside the napping dog, late at night. I hear a short, loud thud, the sound of a large appliance falling over. A boxed appliance. I pull the blinds and can see a motorcycle parked on the corner. A woman stands beside it, looking up the street. The hedge hides what she sees. I leave the dog and go outside. A neighbor, wearing pajamas, walks past. “You heard that?” he asks.
I walk around the hedge and see a small, ruined car, sideways in the center of the street. The front end is battered flat, the rear tires ruptured into strips, a white air bag filling the front seat. A man stands beside the open driver’s door. There is another man lying on the pavement near me. He is wearing a motorcycle helmet, and from beneath it glides a slow syrup of blood. He is unmoving, arms thrown out. A mangled motorcycle lies across his lower legs.
A young man kneels at his head, cradling the helmet. Many people mill about, but he is the only one near this man. I kneel on the other side. Now I can see the gray pallor of the face, the eyes fixed, half-open, the small pool of dark blood that is not growing anymore. He is a big guy. The young man says, “We have to stabilize his neck.” He is quiet a moment, then adds, “I don’t think he’s breathing.”
“Is he okay? Oh my god, oh my god,” a tall man standing nearby says, his voice tight. He is wearing a white leather biker’s jacket and holding a motorcycle helmet.
I feel for a pulse in the thick neck and my knees roll across street grit. I look up at a woman nearby and ask if she’s called 911. She nods.
The man beside me is very young. “Come back to us, dude,” he murmurs, “come back,” bending his own head close to the man’s face.
“He’s not breathing,” I say. “There’s no pulse.”
“We can’t take the helmet off,” he says, and I hear his stress and I feel my stress, the tight, timeless tension. “We have to stabilize his neck,” he says, and I want to say and perhaps I do say, This guy is dead, his neck is not the problem—but the young man is shaking his head, pleading with me. I look around, at a crowd of people staring, bright headlights from odd directions. Why aren’t I hearing sirens? The firehouse is only a few blocks away.
The tall man says, “He’s my roommate,” stepping back and forth, back and forth, like a bird. “That’s my bike,” he tells me, waving at the motorcycle on the corner. He is beginning to realize this isn’t just a bad spill.
I begin compressions, and there is a strange mushy sensation, ribs crushed, and something more, the startling absence; it feels like flicking a familiar light switch and nothing happens and you flick it again, and again, because light is what you expect. Now I’m thinking about vital organs and oxygenation and maybe paramedics in a minute or two who can intubate and shock, because maybe this guy has a heart that wants to beat again long enough to give away a kidney or two. I do it because the sweet young man is still whispering, “Come back to us, dude,” and because a lot of people are watching as though waiting for a play to begin.
These compressions I am doing—counting, the way we are taught to do, by singing to myself, Stayin’ alive, stayin’ alive, and damn, if John Travolta’s magic swaying walk down the sidewalk doesn’t come to mind—these are bad compressions. I’m not really trying. This is crappy, pointless. Too many minutes have passed. They passed before I even strolled out of my apartment. Too many minutes without oxygen. But almost because of that, the futility, because I can do better than this, because his chest is soft and his limbs are flaccid and there is no life in this man, I renew my efforts. Then a skinny guy who looks too young to drink kneels beside me; he is holding a stethoscope. “I’m a doctor,” he says, and I sit back on my heels so he can listen. He sees what I see, the gray skin, the unmoving puddle of blood, and says, with the same reluctance I’m feeling, “Do you want me to take over?”
“No,” I say. “I’m fine.” And I don’t start again.
And there are the lights at last, the red and blue, the burly guys in firefighter turnouts carrying heavy boxes. The rest of us step aside, but their practiced eyes take it in and they aren’t moving very fast. A firefighter shakes out a shiny silver blanket and drapes it over the man on the ground.
Maybe your vision of a good death is Grandpa at home in bed, surrounded by his loving family, whispering “I love you” to each person in turn. (One of my favorite cartoons shows a scene like this, and the person in bed is saying, “These are my last words. No, wait—these are my last words. No, wait…”) Such a death is uncommon. People dying slowly of a chronic illness also die suddenly from such things as a seizure or hemorrhage, and if they don’t, they are likely not talking. Almost everyone who dies slowly from illness or age is unconscious in the last hours or days—or at least silent. Is a dying person who appears to be unconscious in the same state as a person who has fainted? Or a person who is sleeping?
Whatever the state is, many people are not responsive when they die. Their eyes are closed or even fixed; they don’t seem to be aware of others. They are quiet, and so we call it peaceful, but how do we know? A person who does not seem to be awake may be conscious in a way we don’t grasp. They may be paying very close attention to what is happening right now. They may be whispering “I love you” in a voice you cannot hear. I don’t know. No one knows. Maybe, like a lot of people, you imagine that the best death is the one that steals upon us in our sleep. That seems sudden to me.
The fantasy of a quiet leave-taking in complete control is, for the most part, just that. A fantasy. Our ideals about the so-called good death are constricting. Death is not something at which we succeed or fail, something to achieve. Life and death are not possessions. If we think it has to look a certain way, do we judge anything else as lacking? Be wary of the leap to disapproval about what a person says he or she wants or has planned. We die in breathtaking solitude. The value of a death doesn’t depend on what anyone else thinks about it. My death belongs only to me; its value is known only by me. Can our death fit our life? Can it reflect the way we h
ave tried to live, wanted to live? Rather than glibly wishing for a “good death,” perhaps we are better off thinking of a “fitting death.”
Common definitions of a good death also presume that the dying person is accepting of his fate, preferably in a way clearly visible to others. In the government’s definition of this singular event, did you notice the unapologetic inclusion of others? Most definitions of a good death are social at the core, counting the experience of caregivers, family, and witnesses as part of the event. You may be fine, but if your uncle Phil or your nurse’s aide is unhappy—well, maybe we should fix that.
One of the witnesses to a death is the institution surrounding it. A study of how hospices defined a good death concluded that it requires a “socially responsible individual who quietly slips away once all that could be done is seen to have been done.” It’s hard for the caregiver and witnesses to be at ease if they think the dying person is not at ease, or is not behaving as expected, or is not asking for what they assume he or she must want. These demands can be stifling during an event that is, in fact, invisible to all but one. This can very easily become a subtle form of coercion, the family and caregivers ever so gently bearing down upon the patient to express readiness, to behave in certain ways and say the right words whether they mean them or not. This ensures that the family and caregivers get the good death they desire. And all these nonpatient others are assumed to agree on everything: family members won’t argue about treatment or act out old scripts in the hallway late at night or try to play nurses and doctors off each other.
A hospice unit in particular has a vested interest in providing visibly “good” deaths. The stories of these good deaths are told again and again. The staff reassures families and patients with examples of people who made fond farewells, sorted out the family photographs, met with a minister regularly, and played the ukulele for everyone. Those who don’t fit this picture are problematic. They become case studies instead.
One of the most common fears people express about death is that of losing one’s dignity. Sir Thomas Browne wrote that he was “not so much afraid of death, as ashamed thereof; ’tis the very disgrace and ignominy of our natures, that in a moment can so disfigure us, that our nearest friends, Wife, and Children stand afraid and start at us.” Browne so hated the idea of the “teares of pity” that accompanied death that he wished to be drowned instead, where no one could see.
Loss of dignity is one of the most common reasons people give for choosing assisted death, and we refer to assisted death with the prettified phrase death with dignity. Death is dignified only because you choose it. One man dreads “all of those painful and demeaning things” that come from being dependent for his care; another person fears having to be fed, and another needing to be helped to the bathroom. Such things feel below our dignity somehow, though we may lovingly do such things for each other without concern.
We have a deep need for autonomy. The concept of human rights is based on the idea that humans have an inherent dignity by virtue of being human. Refugees and prisoners of war deserve our help because they have intrinsic worth; they deserve to be treated well because they are human. But we also say of refugees and prisoners of war that they are suffering an “indignity” because they are unable to make choices for themselves. Which is it? Are we always creatures of dignity because of our core quality? Or does our quality depend on our control?
We know that serious illness means we will need help, that illness is a visible state and privacy is largely sacrificed. Many people will describe how important it was to be the caregiver for another, what a humbling experience it was to do for another when the person was too weak to do for himself. Perhaps you will vigorously deny that physical weakness is undignified in and of itself. After all, everyone cries sometimes; everyone needs help. But this is one of our favorite double standards. It’s all right for you to cry; of course, you need to cry. It’s okay for my elderly grandmother to need help going to the bathroom. But I won’t let you see me cry. I won’t let you help me to the bathroom. That’s different.
Ruthann Robson has a rare cancer. “Someone actually tells me this,” she writes. “‘I really admire the way you are conducting yourself with such dignity.’ ” Robson demurs. She is crying in the bathroom at work, puking in the evening at home. Her hair has fallen out. She is so tired she can barely stand. The woman seems to see Robson’s behavior as dignified because all this desperation is taking place behind closed doors. Because she seems to be in control. How often do we read obituaries praising the deceased for their “brave battle” and “heroic fight,” for “never complaining,” for “remaining dignified throughout her illness”? We value the stoic exterior; it spares the witnesses. Of course, a quiet demeanor may mask emotional distress; agitation may be a small wave over an ocean of calm. We like distress to stay hidden, to not make us uncomfortable. We want death to look nice as much as to feel nice. Do you have the urge to make death special? Transcendent, spiritual? Death is often a little messy; what happens then? Robson adds, “When I look at her, I see my dying reflected back to me, a shiny silvery object without form or function, an abyss of pity.” No emotion creates more distance between us than pity. We are human and sometimes we cry. Sometimes we lose our tempers, tremble with fear, puke, and wet our pants. This is life; this is death.
If dignity arises from our inherent worth, then aging, illness, and weakness can’t affect it. We can be upright even while falling down. I think one of the marks of maturity—at least, a marker I have been working on my entire adult life—is the willingness to be seen exactly as I am. As we grow more settled and mature, we become less hidden to others, more transparent to ourselves as well as to each other. With this growing authenticity comes a deepening of intimacy with each other. We are no longer appearances banging against each other but real people looking at each other. Authenticity and intimacy go together; intimacy and loss go together. You can’t have one without the other. Knowing one’s self makes it possible to be seen by others, and makes it possible to see each other, however we are. Broken, vulnerable, afraid. Ready. Not ready.
We can plan for many elements of dying. We can write a will, decide what music we want to hear and how to dispose of our bodies. But even if I choose assistance in dying and drink the medication with my own hands, I haven’t chosen to die. Death is choosing me. The illusion is that we can be in charge of the fact that we die.
The older I get, the easier this seems. I am beginning to accept that sometimes I need extra help, and to not see it as a reflection on my worth. I see that autonomy isn’t necessarily physical. True self-determination—as refugees and prisoners show us every day—is the freedom to hold one’s own ideas, to live, however confined, in a spacious mind. It is becoming easier for me to see that my body is not a reflection of my worth. It’s easier, but that doesn’t mean it’s easy. I am a little less flexible about all this change than I would have predicted.
Statues and pictures of the death of the historical Buddha are invariably images of stillness and serenity. The traditional “dying Buddha” lies on his right side, his robes neatly arranged, eyes closed, face composed in a quiet near smile. But the prince who was surprised to discover that sickness existed died from food poisoning. He was an old man by then. He walked until he couldn’t walk anymore, then sat under a tree, and then lay down in a public place. He is said to have died from the effects either of mushrooms or bad pork; in either case, that would mean vomiting, cramps, and bloody diarrhea. His followers gathered around him and he told them not to turn away. “Look,” he said. “You too. This too.” This comes to you and you and you. This is part of our nature, this is part of your life, of how you live, of what it means to be human. Why would you turn away?
The statues lie about one thing, but they tell the truth about another. We may be in extremis and still at ease. The Buddha’s dignity had nothing to do with the dissolution of compounded things and everything to do with understanding that compounded things always
dissolve. Dignity is an expression of this greatest of freedoms: to not be disturbed by what happens to the body.
A funny story about control and how mastery of this kind stays with me. Some years ago, I was teaching a workshop on these matters of death and dying with my friend Jill, also a Zen teacher. I spoke briefly in introduction and then handed off to Jill to tell a few stories about her experience as a hospice volunteer.
After about ten minutes, she stopped talking. She just gazed down at her notes in silence. Finally she looked at me and said, “I seem to have lost my place.” That was all she said. Eventually I asked the group to take a break and went over to her.
“What’s up?” I asked her.
“Why am I here?” she asked, peering at me intently. “Why are you here?”
There was a doctor and another nurse there, and we took Jill into another room and checked her out. She knew who she was, but not where she was or her birth date or what she’d had for breakfast. Seizure? Stroke? Many possibilities. She couldn’t retain any of the information we told her. For the twentieth time, she asked me why we were there. I said we were teaching a workshop on death and dying, and she said, “I must be here for show-and-tell.” Over the next twenty minutes she made that joke several more times.
We sent her to the emergency room and they sent her to the ICU for the night, where she had the same circular conversations with the doctors and nurses—“Why am I here? Why are you here?”—and made the same joke about show-and-tell many times. Eventually she was diagnosed with an uncommon, benign condition called transient global amnesia. She simply didn’t make memories for about twenty-four hours.
Jill couldn’t remember anything that happened in that period, but she was still herself: blunt, curious, impatient, and witty. The qualities I think of when I think of Jill were still there, though her mind seemed to be more or less on vacation. To this day she doesn’t remember going to the workshop or being sent to the hospital. The essential, conscious “I” we value so much—the self in control, making decisions—was gone. Yet the person we knew was still there. The quirks and texture of the unique Jill never left. When she made a caustic comment about show-and-tell, she became the joke in a way quite delightful to many of us with a dark Zen sense of humor. Surely, we’ve all been that exhibit at one time or another. I pulled the workshop back together and we went on without her. At some point, before we knew the outcome, someone brightly said, “Wouldn’t it be wonderful if she died while teaching a death-and-dying workshop?” In a way, she did.
Advice for Future Corpses_and Those Who Love Them Page 5
