Suffering is a deeply felt threat to the integrity of the self. It means that we hold on to the hope that something will remain unchanged even as it all slides away like sand in running water, like water from our hands. We can have physical pain and not suffer; we can suffer without physical pain. A very few people may have uncontrollable pain. A few other symptoms of dying can become intractable—unmanageable with drugs and nursing care. Severe dyspnea, delirium, uncontrolled nausea, muscle spasms, and depression are rare but do occur.
There are other forms of suffering: psychological, emotional, and spiritual suffering are all recognized. People can get stuck trying to die. Callanan and Kelley call this “being held back,” an aspect of being aware of nearing death. A person who has been restful suddenly becomes upset. Do they need to see a particular person or write a private letter? Or confess? “Telling us about ‘being held back’ is a way dying people have of asking us to ‘look again: something’s been missed!’ ” There is a person they need to see, a goodbye to be said, plans that must be made, paperwork to sign. An anniversary to reach. Shame to be reconciled. A crime to be punished. Love to be returned. The things may seem long gone or unimportant to you, but they are filling the world of the dying person. Don’t diminish or dismiss such concerns.
A person who feels terror at God’s coming judgment or a sense of irrevocable sin is in spiritual distress. In early European Christianity, a person who died while in the process of conversion would be buried with their head inside the sacred ground and their feet outside. A person who feels they have not been wholly forgiven by God or the Church is likely to feel great distress; he is disconnected from any sense of wholeness, powerless, and without peace.
Existential pain comes to all of us, is woven into the fact of being human. But existential distress is a crisis. This is sometimes called “unbearable suffering,” a legal concept. People can feel panic about death, experience great hopelessness and despair or awful remorse. They may have no sense of self-worth, or they may be terrified of dependence and the loss of control. A person may simply feel very scared about the experience of death itself. They are not clinically depressed or delirious. They are just suffering in a particularly terrible way: facing what cannot be stopped without any composure.
If a person is suffering from physical problems or deep existential distress is high, he can be treated with what is called palliative sedation. This essentially means letting a person sleep their way to death. Strict criteria are applied. This is a treatment of last resort, used when all other treatments—psychotherapy, drugs, meditation, nursing care, pastoral help, hypnosis—have failed. Usually a DNR order must be in place and informed consent obtained. No futile treatments, such as tube feedings, can be used.
Respite sedation is tried first: a period of one to two days of sleep brought on by strong medications like Thorazine, Haldol, and Versed. Midazolam has the quality of inducing amnesia for the period of time it is used. Respite sedation can allow a person exhausted from fear to rest, “thereby,” in the words of one researcher, “allowing patients the opportunity to regain psychological strength in order to face the existential issues that precipitated the sedation.” In other words, sedation may be a break from the overwhelming experience of dying, so that a person becomes strong enough to face dying again.
I describe this, not because you or anyone you love is likely to need it, but because you may be afraid that you or someone you love will suffer. You will not have to suffer.
And, yes, here we are along this line, this veiled time when none of us sees entirely clearly, here at the very end of life where a lot of things begin to blur. Where we talk about double effect and also about assisted death. Where we see the joy of nowness and palliative sedation. Where we are forced to confront the fact that we have ideals, that we believe things should go a certain way, and that certain things should be said and done. Where we discover that a prognosis can be wrong, goodbyes are not always said, and death can be messy. Where we find out that we do believe only a certain kind of death is a good death.
In Jewish law, a person at the edge of death who is expected to die within three days is a particular kind of creature, a goses—a person between life and death. The word is said to come from the sound of the breath in the last hours of life. In Jewish tradition, such a person should not be touched or disturbed except as necessary to provide medical and nursing care, in case such touching might hasten the death. Any required touch should be as gentle as possible. The room is kept quiet and serene, with talking limited to loving reassurance. Visitors leave to eat or drink or have conversations but are careful not to leave the dying person alone lest they feel abandoned.
No one is really alone at the moment of death, perhaps, because the membrane is very thin here: between past and present, life and death, corporeal and ephemeral, body and mind. Dying people sometimes appear to have spiritual experiences; these are known as “deathbed phenomena.” People gesture and wave, seem to hold invisible objects, or arrange items or mime doing something like cooking or knitting. Perhaps it is biochemistry, or memory, or dream. We cannot know. A person who has never done so before may begin to pray or sing religious songs. In various large studies—involving thousands of people—as many as half of the families interviewed said their dying relative appeared to talk to people who were not there, have visions, or describe visiting other worlds or seeing bright lights. A woman may appear to hold and cradle a baby; men will reach to hug an invisible person. Mysteries. A dying person will occasionally predict the day or time of their death. And notice the expression on the person’s face. Is she happy? Is she, finally, at peace? A woman listened to her dying husband have a long conversation with the corner of the room, as though someone were standing there. When she asked him what was going on, he said, “I can’t talk to you now, I’m busy. I’ll talk with you in the morning.” The next day he told her that people were helping him get ready: “Surely you must know that I’m living in two worlds now.” Later she found him sitting on the edge of the bed, gesturing as though he were eating a grand meal. “We’re having a party,” he explained. Callanan and Kelley note: “The most important thing to remember when a dying person sees someone invisible to you is that death is not lonely.”
Don’t dismiss such experiences, try to explain or define, or—oh, please don’t—“reorient” the person to the fact that they are imagining something. Instead, listen to what is said. Watch. Ask questions. Be patient. Most people who have witnessed this feel the experiences were deeply comforting and important, and brought peace to the dying person.
If you’re at the bedside, provide safety. The reaching, picking, and gesturing, the conversations and parties, can become an urgent need to get up, climb out of bed, and go. Protect the person from an accidental fall.
The rest is mystery. I like to think the person is wayfinding; they are holding a kind of compass in their hands, looking for the path. I think of the lovely song by Rickie Lee Jones called “Running from Mercy,” a song high on my own playlist for dying. In her inimitable murmur, she sings, “There’s that door / I’ve got that door / I know where that door is.”
Fantastic. Most people stop speaking days or even weeks (or years) before death, and no one can remember their last words. But some people remain conscious until the last hours of life—even to the final minute—and these last words can be wonderful. Cotton Mather, an ambiguous role model if there ever was one and not a man known for exaltation, is reported to have said, “Is this dying? Is this all? Is this all that I feared, when I prayed against a hard death? O! I can bear this! I can bear it! I can bear it!” When Anton Chekhov was very ill, he left Russia for a spa in Germany. One day he sent for the doctor. When he arrived, Chekhov said simply, “I am dying.” The doctor’s answer is not recorded. Champagne was considered a good medicine for heart conditions at the time, and Chekhov was persuaded to take a few sips. He hadn’t, he quietly remarked, had champagne in ages. I haven’t had champagne in ages. Then h
e closed his eyes and died. (His body was sent back to Russia in a refrigerated train car, in a box labeled “Oysters.”)
I don’t think it matters if we are conscious or unconscious when we die; the line between awake and asleep is a little like the other arbitrary boundaries we draw. Most people aren’t awake, but what kind of consciousness they have remains a mystery. Lots of people say they want to die in their sleep. They don’t want to deal with the dying part at all. Marge Piercy: “I want to click the off switch.” I do want to be awake; that’s the curious part of me, not wanting to miss a minute of life but also not wanting to miss any of this singular, unrepeatable event. What is more likely is that I will fall into this peculiar sleep like no other. I don’t know what kind of dream I will have.
Doctors and nurses use the phrase active dying to indicate the last few days or hours of life when certain marked physical changes can be seen. We forget the oddity of this phrase. People wonder if it means death is happening right now, this minute. Does it hurt? And how can you actively die if you’re lying there unconscious? But dying is not a passive event. We can’t control it, but we do participate in it. We aren’t simply watching or waiting for something to happen to us. We are dying, and this is a verb. An act.
A familiar complex of signs tells us death is very close. People who are close to dying become profoundly weak and eventually can no longer move at all. The anal sphincter loosens, and bowel control is lost. The person is incontinent; he may have difficulty urinating. In time, he stops making urine; the kidneys fail and so urine production slows, the urine becomes dark and concentrated, and then stops. Near death, as the kidneys shut down and circulation begins to collapse, the pH of the blood changes. The ratio of electrolytes that control muscles and nerves change, too, and sometimes people have jerking limbs, tremors and heaves, or itching. The hands and feet may become cool and mottled. Arms and legs will swell as circulation begins to fail. A dying body withdraws to the center: oxygen and energy are directed inward, as if in shock; mind, awareness, turned in. As death approaches, the sensorium becomes clouded—seeing, hearing, smell and taste, tactile sensations, all dull. Eyes glaze over or stay half-open; a person may stop blinking. Brain-stem auditory evoked responses (BAERs) that measure hearing are normal in comatose people. Many people who have awakened from comas remember conversations that took place in the room. Always assume people can hear you. Thermal regulation breaks down. People may have terminal fever and sweat copiously. The skin may be hot and dry, hot and damp, cold and damp. They may have hiccups.
Breathing speeds up, slows down, becomes uneven. Sometimes breaths are very deep, or a breath is skipped. Breathing may completely stop for several seconds, which is called apnea. The rate and depth of breathing may vary in either a regular or unpredictable way. Cheyne-Stokes respiration is variable but somewhat regular: apnea, shallow breaths, deep, hyperventilating breaths, shallow breaths, apnea. Biot’s respiration, which I actually see more often than Cheyne-Stokes, is an unpredictable variation of apnea with breathing of an irregular rhythm. The person may also grunt at times, or grunt with each exhalation or gasp. Sometimes a person will seem to use their shoulders almost like a bellows, up and down with every breath. A person may seem to chew with each breath, or the jaw sags and the mouth hangs open.
Apneustic breathing can be caused by brain damage, such as from a stroke or trauma: a rapid pattern of shallow breaths, with a long but shallow inhalation and weak, ineffective exhalations. At the very end of life, or in cardiac arrest, you may see agonal breaths, which are weak and gasping. Agonal breaths often have an odd noise. Apneustic and agonal breaths cannot sustain life; they are signs that death is very close. Notice the change. Consider leaving the room briefly in case they need to be alone. You might touch a person’s feet or hands. It is perfectly all right to be silent. You might want to get in bed with the person and simply rest together. Be as present to this, right now, here, as you can. No need for words. I know where the door is.
One part of normal dying is particularly distressing to caregivers and family: a kind of noisy breathing commonly called the death rattle. Noisy breathing is a normal part of dying, very common. People often die within a day after it starts. We clear our throats frequently without thinking about it; noisy breathing happens when a person becomes too weak to clear their normal secretions. Breathing sounds moist and may have a quality of crackling or gurgling.
Medications may help a little by drying up secretions. But the drugs are only useful for about half of patients, and almost all patients have significant negative side effects. Is it worth quieting this sound at the cost of confusion, restlessness, dry mouth, and sedation? Nevertheless, such medications are often prescribed in what hospice staff call “treating the family.” There is no reason to think a person is bothered by the rattle, because signs of discomfort aren’t seen with noisy breathing. A woman who watched her father die remembered that his breathing sounded awful to those in the room; their distress was obvious. But he was alert. He saw the distress. In between his irregular, failing breaths, in his last minutes—in what had to be a final act of parental generosity—he gasped out the words, “No pain.”
Caregivers can help reduce some of the noise by turning a person on his side. Often one side is more comfortable than another. You can use firm pillows under a person’s shoulders and behind the back and legs to help keep the person in this position. It may be helpful to roll a person from one side to the other every few hours. But remember that noisy and uneven breathing is a natural part of dying. Think about whether you are treating your own discomfort.
When organs are beginning to fail, a spiral begins in which toxins accumulate and cells are deprived of oxygen. Sherwin Nuland described actual death as “a process in which every tissue of the body partakes, each by its own means and at its own pace. The operative word here is process, not act, moment, or any other term connoting a flyspeck of time when the spirit departs.” The body, that magnificent, complex, beloved system of systems, is failing. As each part fails a little, the homeostasis of the entire system begins to fail. Each system tumbles gently into the next like dominoes. The heart rate and respirations may speed up, or slow down, or just change for no apparent reason. By-products of metabolism break down in acidosis, and the room may suddenly smell sweet.
The great thirteenth-century Zen master known as Dōgen died in his fifties—something of a ripe age at the time. During his last illness, he wrote a poem about going to Yellow Springs, the Shinto land of the dead:
For fifty-four years
Sinning against heaven;
Now leaping beyond,
Hah!To cast off all attachments,
Living, I leap into the Yellow Springs.
Alive, he leaps. Can I be curious about that leap? Heart pounding, palms damp, but curious? About what happens next? Can I be interested in this moment, which is unlike any other? Can I leap into the unknown springs, knowing there is no other choice, with arms open wide?
When I watch snow falling, I see the transformation of the world into a smooth plane where differences disappear. The snow falls in fragments so delicate that a mere breath can destroy them—the way moments fall, the way our life passes by. It covers the earth with something strong and solid and pure. Each of us may be nothing more than a moving wave of change, but we are waves able to know that. We rise and fall in an infinitely deep and timeless sea, upright and undisturbed. This is the other side of our dangerous situation. Dying is perfectly safe. It isn’t going to hurt you.
9
That Moment
Such wonder. With my eyes closed, I can tell. When the Buddha died, Ananda, one of his most devout attendants, said, “My hair stood up.” Do we have a constant, subconscious awareness of the pulse, a microscopic attention to the flow of blood? Do we know life as something electrical? Pheromonal? Ethereal? The follicles on the back of your neck salute in surprise. For the first time since conception, the body is still. Stopped. Life is tension, life is anima
tion, movement, tone, elasticity. Not this.
At the moment of death, a thousand tiny things happen. A fading, a flattening out. The eyes become cloudy and appear to sink. The face turns flaccid and the jaw sags. The skin falls into shapes never seen in life. The face with which you are so familiar, upon which you have gazed so many times, is that of a stranger. A mask. A dead body is like nothing else in the world: a carcass, hollow, an object lesson in Newton’s law—we are bodies in motion, staying in motion. A corpse is a body at rest. We call it a body in repose, and rarely use this word in other contexts. It is from the Middle English; the original meaning is to replace, to put back. Maurice Merleau-Ponty believed that we give meaning to objects by using them. The meaning of the self is in its function. He called this intentionality, and death a kind of “slackening” in the wires of intention. To look at a corpse a moment after death is to see in the most incontrovertible way that we are creatures of intent.
Take your time. There is no hurry at all. No hurry, no need to move a body quickly or cover it up or leave the room. Look. Please, do look. Something profound has happened in this room. It may have been noisy and may have been silent. You may be calm; you may be distraught. No matter. Take your time.
And yet death is not a single moment at all—or, rather, it is a very long moment, defined in different ways. Anticipated after a long illness, death is a breath, then no breath for a few seconds, for many seconds. Then another breath. A loud gasp. Then breathing again. Then no breath. I have seen people breathe four times a minute, three times a minute. Once a minute. One breath, half a breath, the respiratory center’s last command. There is scant but intriguing evidence that delta waves in the brain continue for a few minutes after this. Even moments after death, miniscule electrical signals can fire—the tiniest twitch of an eyelid or lip.
Advice for Future Corpses_and Those Who Love Them Page 13
