The writer Dennis Potter died of pancreatic cancer. A few months before his death, he gave a remarkable interview on the BBC. His wife was also dying, of breast cancer, and he was her main caregiver. He was relaxed and smiling—his pain cocktail was a combination of morphine, champagne, and cigarettes—and full of his signature dark humor. Dying, he said, gave him a new perspective on life; it gave him a way to celebrate.
“The blossom is out in full now,” he said, describing what he saw from his office window. “It’s a plum tree, it looks like apple blossom but it’s white, and looking at it, instead of saying, ‘Oh, that’s a nice blossom’ … last week looking at it through the window when I’m writing, I see it is the whitest, frothiest, blossomiest blossom that there ever could be, and I can see it. Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous.” He couldn’t really explain, he added; you have to experience it. “The glory of it, if you like, the comfort of it, the reassurance ... not that I’m interested in reassuring people, bugger that. The fact is, if you see the present tense, boy do you see it! And boy can you celebrate it.”
He died nine days after his wife.
8
Last Days
Not long after Butch settled into his hospital bed in our living room, he began to slide away. His sobriety had been important to him. He’d been reluctant to use narcotics, but he eventually took small doses of morphine. He could not control his bladder or bowels. He didn’t want to eat. This man who had spent most of his life in a struggle for safety and love had a ceaseless stream of affectionate visitors. He slept or lay quietly in bed most of the time. Now and then he would smile at the faces all around him. Cleo was there, and he knew he was in a safe place, and finally his pain was gone. He seemed to relax in a way I’d never seen in the five years I’d known him.
I helped him to the commode one mild, sunny afternoon. He was thin skin stretched across bones, closed eyes, fingers like spindles. As I helped him to lie down again, I said, “Butch, how do you feel?” And he made a sublime smile without opening his eyes. “Fantastic!” he said.
He never spoke again. Several hours later, in the middle of the night while we sat beside him, his breathing began to slow, and slow, and then it stopped.
To sit in vigil by a deathbed is a very old custom. It is usually a shared task. There may be prescriptions for who comes, and when, and what role they play, even where they sit in the room. In most of our history, death has been a social event, and still is in many places: a public occasion, because it affects everyone. Births and deaths bring the crowds, and the crowds seem to say, This is what counts.
Dying people can be quite clear about their needs, but they may also be opaque and symbolic. Either way, this is communication: needs, wants, wishes, regrets and fears, dreams and hope. Maggie Callanan and Patricia Kelley are experienced hospice nurses. In their book, Final Gifts, they describe many of the metaphorical and shadowed ways they have seen dying people communicate. They suggest keeping a notebook for everyone at the bedside to use, where they can write down what they hear and see, to help crack the code. They advise caregivers to “remember that there may be important messages in any communication, however vague or garbled.” We who are watching may not know the value of a certain act, its past meaning or importance. A person may want to hold a necklace or look at a photograph that seems meaningless to you. You have no way of knowing what the meaning is, and may never know. If a dying person wants to hold a stuffed rabbit, find a stuffed rabbit. Find it quickly.
A dying person may rely on the vocabulary of the work they did, their family of origin, or their religion. Don’t assume a person is confused just because he is responding to something that you don’t see. He is telling you something. If he suddenly wants to get out of bed after being unable to stand, ask: Are you leaving? Is it time to go? Metaphors of travel are so common: packing luggage, buying a ticket, catching the ferry, wondering where the passport is, driving—and driving home. If a person says to you, I want to go home now, you may think to reassure them by saying, You are already home. But that may not be the home they mean. Perhaps they are thinking of their childhood home. They may mean the afterlife. A better answer might be: It’s okay to go home.
Once a dying person has said goodbye, they are done saying goodbye. Listen to the farewell; say your own; say it once. Resist the urge to repeat yourself. You can’t fairly ask a dying person to satisfy your emotional needs. Don’t ask for forgiveness. (A person may ask for, or offer, forgiveness for an act no one else recalls.) Resist the urge to bring up “unfinished business,” to seek “closure.” Such things are due the dying alone, and many people do want to finish unfinished business, make amends, explain themselves. You are the witness; it’s not yours to open that conversation. Your burden is yours to carry; don’t ask a dying person to carry it for you.
I like to read obituaries, the miniature life stories filled with surprising details where one least expects surprise. One thing I notice—because I still have a little anxiety; I admit it—when I scan the list, is that almost everyone dies at an old age. Contrary to what our television watching habit may lead us to believe, most of us don’t die at the hands of serial killers or from cancers that allow us to remain attractive or the malfeasance of a drunk driver. Most of us die as old or older than most people who have ever lived.
A few of my clients are in nursing homes. It will happen that I check in at the nurse’s station and let the charge nurse know I’m there and who I’ve come to see, and I pat the desk and turn down the hall and find the room and knock and come in and find that the person I’ve come to see is taking his last uneven breath, without any warning. What do people die of, exactly? I used to visit a 105-year-old woman who lived in an assisted-living facility, in her own apartment with a kitchenette and bathroom, and a dining room down the hall. She was weak, but she could walk. She was terribly hard of hearing and watched daytime television with the volume full up. She had a tendency to adjust her underwear in the hallway, and a few other eccentric behaviors that are the rightful province of the very old. But she probably wouldn’t have been eligible for hospice care, if she’d been interested.
An aide was helping her one day and left for a quarter of an hour to get linens. When she returned, the woman was dead. She had not been dying, exactly. She was just well past that supposedly divine term allowed to human beings, and died more or less exactly as I expected her to die: all at once, quietly, and alone.
The Daily Telegraph is famous for its death announcements: brief, laconic paragraphs, page after page of them. What strikes me is the picture of ease. Death seems simple, natural, expected. The brief announcements note that a person died peacefully, he was much loved or died after a short illness and wonderful life of 93 years; she was surrounded by family; she was at her home; he died at 94 with his daughter by his side. She died suddenly at home, died suddenly but painlessly, passed away peacefully. Over and over, every day. He was very much loved. She died peacefully aged 99 of “old age.”
No one officially dies of old age. We die because something in the body fails, and in legal terms that’s pathology, disease, injury. William Osler, the great nineteenth-century pulmonologist, called pneumonia “the friend of the aged.” These days, we call it “the old man’s friend.” Pneumonia is one of the most common immediate causes of death in the world; it is quick and often seems painless. Death certificates list both the immediate and underlying causes of death, which may be pneumonia complicated by heart disease, or heart disease complicated by emphysema. (In other words, old age.) There is good, civic sense in this. Death certificates tell us the history of our health as a group, which diseases are common in different populations, which groups are at risk for certain kinds of illness. Death certificates frame the inequities in health care. Without them, we wouldn’t necessarily know that African
-American men die more frequently of cancer than any other racial group, or that lung cancer rates are increasing in middle-aged women. But they don’t tell us that most of us die from entropy.
The comedian Laurie Kilmartin used Twitter to describe her father’s last days. Her comments were often funny and poignant: “Just promised Dad I’d be nice to Mom. Damnit.” She noted how hard it was to be appropriate, to say the right thing. “Hospice says to reassure the loved one that they can go, that we will be ok. So me sobbing ‘Dad, don’t fucking leave me!’ was frowned upon.”
Yes, Laurie, you’re right. Don’t do that. Don’t ask a person not to die. (On the contrary. I saw a gerontologist I know stand by the bedside of an old woman and say with a cheerleader’s enthusiasm, “C’mon, Margaret. You can do it!”)
A group called No One Dies Alone provides volunteer companions for dying people who don’t have visitors. I’ve always had a little resistance to this—not that people should be left lonely in their final months and weeks, but that our actual death has to have an audience. We all die alone, and—more to the point—many people will only die alone. People who haven’t been left alone for weeks will suddenly die in the one moment a caregiver or spouse goes to the bathroom. Why? They may be trying to spare a loved person; dying people can be just as polite, generous, and modest as people who are in good health—and just as stubborn or profane or shy. A person may wait until the person they love most has enough help. And I’m not kidding about modesty. I cannot imagine a more intimate experience than the moment of my death, and I flinch a little at the vision of the Victorian parlor filled with neighbors and servants bearing chafing dishes. From where I stand today, I think I will want to share it with people close to me, will want to have a few hands to hold. But I don’t know: perhaps the time will come and I will feel a powerful need to be alone in that solitary, unrepeatable experience.
So, be sure to give the person solitude for short periods, even if you’re just in the next room. Announce it: I’m going out for a few minutes. It may not even be enough to say, It’s okay to go now. Don’t worry about me. You may need to be quite explicit: It’s fine to die now.
My mother was in the hospital for the last several days of her life. She could no longer stand and really needed nurses around the clock. It was our small-town hospital, the place where my siblings and I had been born. My parents were both schoolteachers, and had taught some of the people who cared for her. The nurses quietly came in to do personal care, and otherwise left the family alone.
My father struggled. He was a reticent man and awkward with affection. He couldn’t bear it. He’d seen the train coming for two years, and he couldn’t bear it. “Pat,” he cried, holding her hand. “Don’t die. Don’t go.” She was unconscious, but he said this again and again. “Don’t die. You haven’t told me what color to paint the bedroom. Don’t go. You can’t die.”
Knowing my father, I didn’t expect anything else. I don’t think he could have said that he loved her any other way, that he didn’t know what to do, that he was shattered by her leaving. But I knew my mother, too. Finally, my sister-in-law, who was also a nurse, and I shooed everyone away. We said it was so we could turn her on her side, but it was really to get my father out of the room. Everyone else left, and we stood beside the bed silently. She took a single deep breath, and died.
A person approaching death from illness or age often changes in predictable ways. I believe that a lot of what a good nurse does at the end of life is looking. Looking and reminding: Yes, this is normal. This is what happens. This is how we die. This is what it’s like. Everything is driven now by the person’s comfort. Everything. Do check the temperature if you’re worried about fever, because fever can be uncomfortable. Just check it under the arm. Pacemaker firing and causing discomfort? You can have it turned off. Stop the oxygen if it’s bothering the person—and you will know it is because they will tug and pull at the tubing and take it off themselves as soon as you’ve turned your back. Comfort leads the way.
If a person becomes suddenly agitated or confused, be sure that an acute problem, such as an infection, is not being missed. Delirium is common and often can be treated. But health care providers do not always use terms like confusion, delirium, and agitation in consistent ways.
People who are dying get confused. How can they not? So much is happening: medication schedules and doctor appointments and visitors and bills and fatigue and lack of sleep. So much is happening so fast and at the same time that one’s capacity is shrinking. Confusion is not delirium. Forgetting details, not following a conversation, missing an appointment—this is not delirium. If you are the helper, write it down. Whatever important details you say, write them down. Many caregivers will pin a note with details to the dying person’s shirt; a note on your shirt tends to be found.
Delirium can be caused by many, many things: medication, low oxygen levels, anemia, kidney failure, changes in electrolyte levels, dehydration, pain or fever. In general, delirium comes on suddenly, in a few hours or days. (Dementia, by contrast, develops over months or years.) Seemingly all at once, the person is disoriented. He doesn’t know where he is, who you are, what time it is, what year it is. He may be absolutely sure he is somewhere else. Attention fluctuates, waxing and waning. The person seems unable to remember what they are told and may speak in complex images or repetitive phrases or not be able to find the words they seek. There are active deliriums, in which the person is trying to climb out of bed and fights reassurance, and there are hypoactive deliriums, in which the person is lethargic and may simply lie there picking at the bedclothes and not responding. The person may hallucinate, not only visually but with tactile sensations, smells, and sounds. People often do remember what happens during a delirious state later and will say they could not control their perceptions or behavior.
Treatment starts with trying to fix the underlying problem. Meanwhile, reduce the stimulus in the room: Lower the lights, keep voices down. You might play familiar music quietly. Music pulls us into the past that has made us who we are, and into the body. Scents can be calming. The most well-known is lavender, which acts on the central nervous system. What scents did the person choose when they were able? Is their bedroom lined with scented candles? Did the person wear perfume or a particular aftershave? A really excited delirious person may need sedating medications just for safety, but the doctor should be very cautious about this so as not to make things worse.
Terminal agitation is a sudden outburst of energy and excitement that happens in the last days or hours of life. People may shout and try to climb out of bed or strike out at caregivers, talk and laugh and cry, or simply roll from side to side. The restlessness can be dramatic and distressing: Grandma gets up on her hands and knees and starts shouting. First, rule out a physical cause, especially pain. People who work with the dying are familiar with this state, and it often does not seem to have a physical cause but rather to be a kind of blunt expression of emotion. And why are we surprised by strong emotion or wild energy at such a time?
A woman who cared for her mother when she was dying of liver cancer described the many episodes of excitement and agitated movement in her mother’s last few days. “Her moments of agitation seemed to me to resemble contractions during childbirth, or the stations of the cross, a kind of labour. The labour of letting go.”
Reorientation doesn’t usually work. You may ask questions (Who do you see? What are you doing?). Freely offer forgiveness and reassurance even if none seems necessary. If a person seems distressed, say, I love you, you are safe, don’t be afraid. (Take a few moments to consider if the distress is yours alone.) If nothing else works, physical causes (other than dying) are ruled out, and the agitation seems distressing to the person, there are medications. Lorazepam is common, and Haldol may be used. People sometimes fear this drug, but it is a well-known and easily managed medication that can dramatically help when a person is unable to control themselves.
The opposite happens, too.
Many people—and this is one of those anecdotal truths, a story everyone who works in this field knows—perk up just before they die. This is sometimes described as “terminal lucidity.” Terminal lucidity is well documented, happens to people of all ages, all different kinds of illness and intellectual status, even in dementia, even with brain tumors, even in people who have not spoken in years. A person who has been mostly asleep or withdrawn will suddenly be more alert, oriented, and may even start talking. It is easy to imagine that the last of the resistance is gone. The simplest explanation may be that she knows it’s time.
These last days, last hours, are filled with change. Certain behaviors that may look like pain—agitation, for instance—may not be pain. But, yes, there is pain sometimes, and a few people struggle for good pain control. Believe what a person says. If a person isn’t speaking, watch for nonverbal signs like grimacing or a tight facial expression, tight or contracted muscles or posture, rapid breathing. Pain raises blood pressure and heart rate in most people. Try to console or distract a person who seems to be in pain; inconsolability is a sign of significant pain.
A person may need more pain medication toward the end of life, but many people need less. Remember not to stop or change any drug abruptly without checking with the doctor or nurse. Morphine can suppress the depth of breathing as well as the rate, so it is given cautiously in people with respiratory issues. If a person is very close to death and takes a high enough dose of morphine, it is possible for the breathing to be suppressed. The Supreme Court has ruled more than once on what is called the “doctrine of double effect.” If the intention is relief of suffering, then the possibility of hastening an inevitable death cannot be prosecuted as a crime. Whether or not morphine actually hastens a particular death, it is possible; the goal is not an extra hour of life but a painless death.
Advice for Future Corpses_and Those Who Love Them Page 12
