a look at life’s end
Throughout a good part of history, and even today in many cultures, people not only knew death, they studied it. They thought about it and prepared for it, learning well in advance how to die and how to help others die. During the 15th century, after printmakers developed a way to produce woodcuts cheaply and pictures could be distributed widely, it became common to study ars moriendi, the art of dying. At the time, people had little control over death or its physical symptoms, so the art of dying was largely religious. According to the elaborate pictures detailed in the woodcuts, in the last hour of life the devil and his army would make a final rush for the soul, tempting it with an abundance of evils: materialism, despair, pride, arrogance, loss of faith, and the like. Those who learned ars bene moriendi, the art of dying well, knew how to enlist the help of angels and saints in resisting the magnetic pull of the devil. They knew how to embrace a humility and peace that would please God, thereby securing for themselves a ticket to heaven instead of hell.
Since Judgment Day is not a pressing concern for the majority of people today, and we now have all sorts of ways to manipulate death, we need to rethink the art of dying well and come up with a new description that suits the times. If we don’t want to die alone in a hospital hooked to machines, if we don’t want to die in pain after a series of brutal and pointless medical treatments, how do we want to die? What would be acceptable, peaceful, and for some of us even meaningful? What do we consider to be “a good death”? What should we strive for, for ourselves and for our loved ones?
Before we do any of this, however, we need to understand how people really die today. Where are they and what are they up against? Unfortunately, Hollywood has given us a lasting impression of a good death: a beautiful young woman—for some reason it is always a woman—is lying in an expansive, pillowy bed, her makeup just so. A doctor, nurse, or loved one stands in attendance. There is a tender, knowing look, some parting words, and then the eyes gently close, the body goes limp, and it is over.
Although filmmakers have added the emergency room death to their repertoire—a huddle of frantic doctors and nurses yelling out for drugs and heart rates and clamps—the standard Hollywood death scene has changed little over the years. In the movie Terms of Endearment, Debra Winger plays Emma Horton, a young mother who dies of breast cancer. Few deaths are as difficult and labored as the death of a mother who leaves behind young children, for her work is not done. She is hard-pressed to accept death or to find any sort of ease or peace in dying.
In the movie version of this sorrowful death, when the doctor says that the lump is malignant, Emma cries. Everyone cries. But after some anguish and some humor and one failed attempt at a cure with drugs, everyone accepts openly that she is going to die. She moves into a large, private hospital room—cozy quilt, oil paintings, fresh flowers, picture windows, framed photos—where she is free of machines or tubes and is strong enough to get herself from bed to chair and back again. She has a warm but matter-of-fact talk with her husband about who will raise the children (the loving dad says calmly that he’ll miss them, but agrees that Emma’s mother will take them), and then Emma says a brief, misty good-bye to her small children. Finally, we see the husband and Emma’s mother slumped in chairs in the hospital room. The husband is sleeping soundly, the mother is clenched in silent grief. Emma looks tired and pale, but her hair is thick, her body young, and her mind clear. Except for what appears to be a small intravenous drip there is no sign of hospital mechanics or medical intrusion. She turns toward her mother with a knowing look, waves a few fingers slowly good-bye, and then closes her eyes to die. A nurse in a starched white outfit walks in, takes her pulse, and announces that she is gone.
Any attempt to reclaim death or to define what it is that we want, must start with an understanding of what death is—and what it isn’t. And it isn’t Terms of Endearment. If we picture ourselves or our loved ones drifting gently off like Sleeping Beauty we will always feel that we have failed. If we picture doctors jump-starting a fading heart or discovering a new therapy at the last minute, bringing someone miraculously back not only to life, but to a meaningful and worthwhile life, we will be deeply disappointed.
Death can follow a hundred different routes. It can happen suddenly from a heart attack, or violently during an accident, but more often than not, it comes after an extended illness, a battery of tests and invasive procedures, numerous hospitalizations, endless discussions and decisions about treatment, periods of decline and periods of improvement, and the untold amounts of disbelief, denial, and pain. In the end, most people are in a hospital or nursing home; a lucky few die at home. Some are amid friends and family; many are alone.
Wherever they are, most people who are near death appear diminished, as if they have lost not only weight but height as well; they are shrunken from their previous size and stature. Their hair may be thin, their skin pale, almost translucent, and their appetites meager or gone. People tend to be extremely tired when they are dying, drifting in and out of sleep, too weak to lift an arm or to hold a conversation. About half of dying people are unconscious most of the time, while others are likely to have periods of confusion. Some are anxious, many are surprisingly peaceful. Most people who are close to death are incontinent or too weak to get on a commode, so they are hooked to catheters or wrapped in diapers. Some are disfigured by illness or surgery. Some receive oxygen through a thin tube feeding into the nose. In an institution, especially in an intensive care unit, patients may be connected to an array of machinery, such as ventilators, heart monitors, blood pressure monitors, intravenous equipment, defibrillators, catheters, feeding tubes, and dialysis machines.
Although pain can be eliminated or made bearable in virtually every case, most people do not receive good comfort care. They may moan wearily or cry out when touched, or they might struggle with symptoms such as nausea, strained breathing, depression, and bed sores. Even those who receive good care typically suffer during their illness and treatments, before they are at the point of getting palliative care, and then during the intervals when pain medications must be adjusted.
It is impossible to predict exactly when someone will die. People with heart or lung disease can be quite ill for an extended period and then die relatively suddenly. Sometimes people who seem close to death hang on for weeks or months, while others die just as they have acquired new strength or clarity. Either way it is confusing and upsetting for families. In most cases, however, especially in cases of terminal cancer, people fade gradually and there are signs that death is imminent. In the last day or two of life, they often float in and out of consciousness, their toes and fingers become cool, and their breathing becomes irregular. Then, as the throat muscle relaxes and secretions collect, a person’s breathing may become noisy—a sound referred to as a death rattle—which is not uncomfortable for the patient, but can upset families. Death itself may be anticlimactic; the person simply stops breathing. Sometimes a person will look as though he is gasping for air or writhing in agony, but in most cases this is not because he is suffering; it is simply the result of muscles contracting involuntarily.
All of this may sound horrible, and the plain truth is that aside from suddenly collapsing dead on the 18th hole, there is no easy way out of this world. It takes nine months and a lot of hard pushing to get people into it, and it usually takes at least that much effort to get them out. Dying is difficult work. It involves pain and grief, and it would be pure folly to imagine that it didn’t or that we could avoid suffering altogether. When we talk about “dying well” or “a good death,” we have to remember that no death is truly “good”; we are always talking about making the best of a difficult, inevitable, and very human event.
It is also important to understand that what we see at a glance can be deceptive and our impressions of suffering may be misplaced. If you peek into the room of a dying person without having any idea of what is truly happening there, you may jump back in horror and mutter to yourself, “No way, not for me. I’ll kill myself first!” But that may be because you have averted your gaze before you had a chance to fully understand what is happening.
One room in particular comes to mind. It is an airy, sunny room in a large house at the end of a rural cul-de-sac. There is a hospital bed in the corner and in it lie the skeletal remains of a man. He is ashen and weak. He drools from what remains of his mouth. Cancer has eroded his jaw, and his tongue is so swollen that he can’t close his lips. A large bandage on his neck covers an area where a tumor has pushed its way through his skin. The hospice nurse worries that the tumor could grow into his carotid artery, which would then spew like a geyser, leaving him to die in a rainstorm of his own blood—thus the pile of dark towels in the corner. A tube leads from his nose down the hall to a humming machine that concentrates the oxygen in the air for him. When he speaks, his words are so quiet and garbled that they are incomprehensible to anyone but the hospice workers and the man’s children.
His children, yes, they are there too, all grown up. A daughter sits by his side, looking tenderly at him, holding his hand and stroking his arm. A son sits at the end of the bed with his niece who is squealing, delighted by her uncle’s antics.
Many years ago this man’s children left him because of his drinking, because of his behavior. Now they are back, reconciled, caring, tending to him daily. They are back because he is their father, because despite any mistakes he made in the past he is a good man, and because they do not want to lose him. Their devotion is clear, and the longer I stay in this room, the more I feel its presence. I feel it until, after some time, I hardly see the disease and disfigurement anymore. Instead I see a daughter’s forgiveness, a son’s love, and enormous pride in the care they are giving their father. I see sadness for what they are losing, but also solace in what they have created before it was too late. I see a man who, despite what is happening to his body, is rich, very rich, in heart and soul.
As I am taking all of this in, a hospice social worker takes the man’s hand in hers and bends over him. He is very close to death—in fact, he will be gone within 24 hours. I can’t hear all of her words, but I can see his face relaxing in the sweet rhythm of her voice. “Rest, just rest,” she whispers softly. As she looks at him, her eyes reveal such tenderness and caring that it is clear that she, too, has come under the spell of this man and all that is happening in this room.
His illness is a wretched one and I have no doubt that he has suffered enormously along the way. But the ghastliness of his appearance now, on the verge of death, in no way reflects what his dying is about. In the past eight months, with the help of the local hospice, he has spent innumerable hours tending to his garden. He has cooked Thanksgiving dinner for his family, he has relished Christmas morning with his grandchildren, and he has organized a family Easter egg hunt. He has not only mended his damaged relationships with his children, he has developed a deep bond with them. He has gotten to know his grandchildren and they have gotten to know him. He is reasonably comfortable now and although, from what I can tell, he has spent little of his life in peace, he now has a great deal of it. His family, while grieving, have been given a chance to forgive him, get to know him, love him, and say good-bye to him. No one would choose to have throat cancer. No one would choose to have their children leave them. But for someone who has had such a life, this dying is quite a sight to behold.
Death is the one instance in which a picture does not say a thousand words, for in death it is not the disability or disfigurement but the caresses, the gazes, the meticulous physical tending, the spiritual discoveries, and the private emotions—spoken and unspoken—that truly convey what is happening. In the end, it is not the act of dying, but all those final moments of living, that are truly important.
To understand just how varied the roads to death can be, and what death is beyond the frightening facade, allow me to lead you into a few more rooms, a few more lives, starting with Betty Holden, who has lost both her husband and her father. Two deaths, very different from one another.
Betty’s father, whom she absolutely adored, was in his early seventies when he was diagnosed with cancer of the gallbladder. Surgery to remove the tumor revealed that the cancer had spread throughout his body. He was told he had only months to live, and was sent home without further ado to live out his final days. “At first Dad rebelled,” Betty recalls. “He said, ‘If I can’t live a high-quality life, I’m going to shoot myself.’ But that didn’t last too long.”
George Walker was a wealthy man who ran an investment brokerage company. He was geared to a competitive world, was tough in business, and had very high standards and expectations for himself and those around him. When he was faced with death, another powerful facet of the man surfaced.
“He had, I’ll call it, a spiritual transformation,” Betty says. “Dad was a tough man and he made a lot of people angry and stepped on a lot of toes. He was very, very strong. But he walked back through all of his life. He went through it and probably suffered through it…. Then his whole countenance of being changed. He became very sweet and tender. His face changed. Of course he got thinner because he wasn’t taking much food, but his face became a very sweet, gentle, beautiful face. I would say tenderness and gentleness came into his being.”
While he had always supported the local church and claimed to be religious, he became truly spiritual in his dying, Betty says. He met privately with a minister each day for about an hour, and when his grandchildren visited they would gather around his bed to pray with him, a ritual he cherished. His new devotion did not spring from fear, but rather from a new appreciation and understanding of life and death. “The minister said he’d never seen a person prepare himself for death as beautifully as my father had,” Betty says.
“He was very open to talking about it, which was wonderful. His friends would call and Dad would say, ‘Well, have you heard I’ve got cancer and they’ve given me about three months to live?’ and then there he’d be off talking, talking, talking. It put everyone very much at ease because he was able to talk about it.”
George Walker not only accepted his own dying, he prepared his own funeral—down to the last detail. He decided what would be sung, what would be said, who would be invited, and even who would sit where. His daughter recalls the day he sent her and her mother down to the church to review the list of hymns with the choir director. The director got so excited over George’s choice of music that he said, apparently more than once, “Oh, I can’t wait for this funeral!” Finally, Mrs. Walker looked at him with disdain and responded, “Excuse me, but do you realize that you’re talking about my husband’s death?”
Not only was there intimacy, spirituality, and detailed preparation, there was also humor. “Dad was a great one to laugh with,” his daughter said. “They put a shower cap on him as they were taking him up to surgery and I said, ‘Dad, you look just like Mrs. Marstead.’ Mrs. Marstead was this very large lady who swam at the beach and she’d always go in with a huge bathing cap. That was another of our bonds—much humor, much laughter.”
In the final weeks, George drifted in and out of clouds of consciousness. Fever came and went. And his family sat vigil. His daughter gave him sips of water, smoothed his hair, trimmed his fingernails, and rubbed the smooth, soft skin on his back. Then, for hours at a time she simply sat in his presence, in the stillness of that large room, watching the changing season outside the window and writing poetry before a fire, as her father slowly and gracefully left this world.
On the night of November 29, George died. His family closed his eyes, sat with him for a time, and called the undertaker. And then they held the funeral that he, himself, had planned.
Nearly two decades later, on the very same day, November 29, Betty lost her husband. But this time, her experience with death was very different.
Late in October her husband, Ben, mentioned casually that he had lost his appetite. Betty’s ears perked up because her husband loved to eat, and so she suggested that they call the doctor in the morning. Some tests were performed, but little was said or done. Over the course of that week, Ben’s appetite continued to wane and he had markedly less energy. At Betty’s urging, more tests were ordered, other doctors were called in, and finally, in mid-November a doctor called to say that something was “very wrong” with either Ben’s kidneys or his liver.
He went into the hospital on November 20 for more tests and wasn’t diagnosed with cancer for another four or five days. Betty still remembers vividly the moment they got the diagnosis. “The doctor came in and said, ‘Well, we found out what’s wrong with you. You’ve got a real bad booger’—that’s what he called it, a horrible name, ‘booger’—‘at the bottom of the esophagus. It doesn’t look good. We’re giving you a little bit of time, but not much.’ I was alone with Ben. My face got all red and when the doctor left the room I burst into tears. Ben shrugged his shoulders and said, ‘Well, tomorrow will be another diagnosis.’ ”
Although they both knew, even before they got the diagnosis, that Ben’s illness was very serious, they never spoke openly about it; in fact they never even acknowledged aloud how serious the situation was. At one point before entering the hospital Ben had insisted on going to his office to look for his will, and Betty learned later that he had said something to a sister-in-law about being very concerned and afraid. “But Ben and I never spoke about his illness. Ben did say, ‘I gather the doctor talked to you.’ I said, ‘Right.’ And then we didn’t talk about it.”
Chemotherapy was started, not to change the course of the disease, Betty said, but to reduce the amount of fluid Ben’s body was producing. His abdomen was constantly swollen even though the doctors drained three or four liters of liquid out of him each day. On the day of the 28th, he was very uncomfortable. The drugs seemed to make him feel sick, Betty said. He had an oxygen tube in his nose and was being given “all kinds of stuff” to relieve constipation. “Everything was either being blocked by the fluid or closing down, and he had this thing harnessed to his nose which he was constantly trying to pull off.”
His children and some grandchildren had arrived. He recognized them, but was not up to having any sort of conversation. They got busy making plans to bring him home. But at four o’clock on the morning of the 29th, a son who had stayed the night at Ben’s bedside called Betty to say that Ben was sinking and that while there was no hurry, she should come to the hospital. The son and his sister were the only ones there when Ben’s breathing stopped. Betty had not yet arrived.
“I was not there,” she said tearfully. “I came and Ben had gone, and I had sad feelings about that. I’d like to have been there. He wasn’t conscious, but I would have held his hand. I didn’t know, didn’t know.”
Finally, there is the story of John (whose name, for the sake of privacy, has been changed), a young lawyer who died of AIDS early in the epidemic before any very useful therapies were available. From early September until his death in January, John’s friends took shifts being with him and, as he grew sicker, caring for him. “All of us would have been happy if he had chosen to die at home,” his friend Andy (whose name has been changed as well) said, “but he didn’t choose to die at home. John wanted maximum care. Maximum care didn’t amount to much in those days, but he had fantasies that there were some people brilliant enough to bring him through it. He wanted everything.”
By late December the disease had ravaged his body and he spent most of his time in the hospital—not just any hospital, but a major cancer center devoted to aggressive medical treatment. He was unable to walk and spent much of his time in pain. His body had become skeletal except where it was swollen from edema. His skin was covered with the purple tumors of Kaposi’s sarcoma and raw sores from lying in bed. “He was such a horror to look at,” Andy said. “If we had not been attending him all along it would have been impossible. He was so monstrous. It was pitiful beyond description.”
On New Year’s Day, John entered a hospital intensive care unit by his own choosing and was attached to a ventilator and other machinery, which is how he remained until his death ten days later. In the first week, during brief moments of lucidity, he seemed to think he was going to make it, Andy said. “Then I came in one morning and I said, ‘You look so peaceful.’ He wrote on a slate ‘Resigned.’ So I hugged him and I kissed him. And after that, I’m not sure he wanted to make it anymore, but he didn’t give any instructions to stop the stuff.”
His friends had little say about his care in any case, for his parents were now calling the shots. On the last day of John’s life, with his respiratory system shut down, his circulatory system barely working, his brain and the rest of his central nervous system only marginally functional, and his mind “resigned,” the doctor announced that John’s kidneys had failed and asked whether his parents wanted to start dialysis. They said yes.
“I took his mother and father aside and I said, ‘This is outrageous. Why are you doing this? You have to let go. You can’t keep him here for another three or four days, deteriorating even more. Why would you do that?’ ” Andy said. “They didn’t understand. They had all kinds of guilt. They didn’t know what to do.”
This is a glimpse of death today. There is no norm, no single picture, not even a handful of categories. Each death is as individual as the person to whom it happens. None is simple. Each is a reflection of the patient, the life he has lived, the people he has loved, the illness he has endured, and the capacity of those around him to accept the reality of death and to do what needs to be done.