Medicine focuses on cures, because a cure is often possible. But once upon a time, comfort was a central part of medicine. Modern medical practice is still sorting out the fact that not doing something is a medical act, and good medicine may mean stopping what you are doing. Really good medicine is more concerned with how a patient feels about her life—and death—than anything else. Lindy West sat at her father’s bedside as he was dying of cancer. He had been unconscious for days. A doctor came in now and then and asked how the family was doing. Terrible, she thought. What do you think? “Is there anything we can do?” the doctor would then ask. West thought: “Apparently not, considering this whole long-slow-death thing that’s happening in this room right now. Also, you’re the doctor. You tell me.”
To provide a good death, the caregivers must do for the patient, not to the patient. She is not a disease or a collection of symptoms or a problem needing a solution. Any doctor who approaches the terminally ill person with the idea that he or she is in charge is on the wrong track. I was really annoyed by an essay by an obviously young neurologist who wrote that hospice doctors are “the artists of death.” No, my friend. The dying person is the artist of his or her death. And that death started a long time before you came into the room, and it will continue when you aren’t around, and it will endure long after you’ve made your pronouncement.
Occasionally, I have to make the hard call to a family member. This is something a person learns to do in all the worst ways: by making mistakes. By saying the wrong thing. I’ve done that, and I’ve learned. I break the news differently, depending on the situation, on whether I know the person I’m talking to, whether I know there is unusual stress in the family. I speak differently to the daughter who visits every day than I might to the sister who lives across the country. I usually start by saying I have some serious news about their relative. If things have just suddenly changed, I might use the phrase final illness or last hours or I may simply say, “She’s dying.” Then I add—almost always, because this is almost always true—“She looks very comfortable. She is quiet. She seems peaceful.” Because on the other end of the phone is a son or daughter or sister or husband hurrying to find the car keys or turn off the stove, and not able to take in much more at that point. How long? How soon? Now? If I have to tell someone that their relative has died—which in many cases is not a surprise and may be a great relief—I start the same way. Serious news.
I’ve seen good doctors stumble over what is called bad news. I’ve seen doctors looming over fragile patients in wheelchairs, speaking in jargon and interrupting the person’s questions. Doctors forget that anxiety makes it hard to remember details and that a person getting this bad news doesn’t know the Latin words or our internal shorthand for treatments. I’ve seen a doctor shake the hand of a person she’s never met before and plunge directly into a technical discussion of whether or not the person would like to be resuscitated in the event that he stops breathing.
When I worked on the oncology unit, an elderly woman spent the evening with her husband and then left to drive home. About ten minutes after she left, her husband had a cardiac arrest. He didn’t survive, even with aggressive efforts. I was his primary nurse, so it was up to me to call his wife. I simply told her that he had taken a turn for the worse and that she should return as soon as possible. When she reached the unit, obviously distressed, I took her into a private room where the cardiologist who had led the resuscitation attempt waited. He stood over her and began describing the anatomy of the heart’s circulatory system.
Finally, she turned to me and said, “What is he talking about?” The cardiologist said nothing, and it was left to me to tell her that her husband was dead.
Another evening, a doctor walked out of a patient’s room saying to me, “You tell him,” and what I was to tell him was that he would have to choose between going on a ventilator that night and never coming off, or dying. That night.
You can fire your doctor. I am surprised at how many people think this isn’t possible—that the doctor is in charge, the boss of you, the only authority. But you are the authority of your own life, and the doctor works for you. How do you fire your doctor? “Doctor, you’re fired.” A good doctor is going to want to know what he did to upset you; if he doesn’t ask, consider it proof that you made the right choice. In a large hospital, a staff doctor called a hospitalist may be able to take over your care while you look for a new primary doctor. You may be able to switch to one of your former doctor’s partners, or you may need to move to another office.
So. It’s time to buy the farm. Pay the piper. If you want to die at home, get all the help you can. Get help from the neighbors and friends and your church and the veterans’ organization and the AA group and your model train hobby association. Get everybody. Then get a good hospice or palliative care program involved, and insist on getting what you are promised. Read the fine print.
If the dice rolls a certain way, you may die in a hospital. This can happen for any number of reasons, and it doesn’t mean failure. It doesn’t mean you or your caregivers did anything wrong, missed a trick, made a mistake. Sometimes a dying person’s needs can only be met in a hospital. We tend to think of hospitals as places where crises are unfolding, and the halls are noisy and nights are broken. But that is only part of it. Many parts of hospitals are hushed and warm; the pace is deliberate rather than hurried; the staff is attentive and skilled. If you get the right hospital at the very end of your life, you’ll have a private room; you can bring in photographs and music; you can have your own pillow. Nurses will offer to shut your door and will knock before entering and never leave without asking, “Is there anything else I can do?” The staff will help you manage visitors and be the gatekeeper and the bouncer if you need one. (Most hospitals have a system where you can keep the fact that you are a patient there completely private, or use a code word so that only certain people are given news.) You will be on a firm but comfortable mattress, with no plastic under your skin. No machines will start beeping just when you’re falling asleep. No alarms will ring. No one will wake you up to take a sleeping pill. You can wear your favorite pajamas.
There are plenty of hospital units where the nurses know exactly how to take care of dying people and the hospitalists know the right medication to order and will lean against the window ledge and answer all your questions patiently. There are hospitals where the staff will leave you alone with your vigilant loved ones when you are actually dying, like the hospital where I was born and my mother quietly died, thirty years later, with her family in a private room. They will leave you alone because the people in the room have been told what’s happening and what’s normal and when to call for help. This hospital may not be a hospital at all. It could be a freestanding hospice or a palliative care unit or a skilled nursing home or a retirement center or even your family home with all the help you need. This is not a fantasy. I’ve worked in a hospital like this. I’ve been the nurse in rooms like this—and I always knock before I enter.
While you’re getting ready to kick that bucket and head for room temperature, we’ll tell jokes if you like. When you’re about to check into the Motel Deep 6, the coffeepot will be fresh and the muffins full of butter. All of this is possible, but a lot of it happens because you insist. Because you and I and all the rest of us insist that there are enough chairs for everyone, that the curtains will close tightly when you want to sleep, and the room will smell fresh and sweet.
And you will be comfortable, because in the good hospital your pain medication comes on time and the nurse who brings it knows how to read dying, knows what’s to be expected and what can be fixed and what can’t. In the good hospital, strong hands will clean you up when you can’t make it to the toilet any longer and no one will make a face or say things that are better not said as you shuffle off the mortal coil. What a wonderful turn of phrase that is. When you’re ready for your dirt nap and you’ve bought your one-way ticket, the nurses will take their time. They w
on’t rush. They will come in quietly and wash you carefully and brush your hair and clean up and slip away again.
7
Last Weeks
Dying can be boring; the world narrows until it seems no larger than the room. But most of the time we forget the intensity of it. Everyone is filled with emotion, moving as though through pudding. One person feels muted. Another presses his hand against his chest to ease the heartache. One visitor is sober; another can’t stop laughing. The whole situation is impossible. You are filled with panic at times. You are shattered. You will feel…everything.
Dying is messy, too—bodies and minds, plans, relationships. A crowd of people passes through, bringing flowers and leaving dirty dishes and footprints. So you spend hours washing dishes and mopping while the cheap flowers in the cheap vases drop petals all over the floor. The laundry piles up, the bills aren’t paid, and no one wants to take out the garbage. You feel afraid. You feel guilty about being afraid. You feel angry. You feel guilty about being angry. You feel grateful for every hour remaining. You feel horrible, because you are longing for the death to come so that all this will be over. You feel tenderness so deep your skin seems transparent.
I took the Death Attitude Profile (Revised). The creators of the DAP-R were psychologists who believed that when it came to our ideas about death, “fear and acceptance coexist in an uneasy truce.” The DAP-R was created to distinguish a person’s fear of death—which may drive him to reflect and seek meaning—from a complete avoidance of thinking about death, which can interfere with any search for meaning. There are many such tools, though I am not at all convinced of their usefulness. Do we need to take a questionnaire to know how we feel about death? Do we need to score our beliefs in order to know whether we are scared or not? If we’re intent on avoiding thinking about death, how many of these questionnaires are we willing to take?
I decided to find out what I could discover, and I was determined to be honest even if that meant admitting to feelings I didn’t want to have. The profile is a set of thirty-two questions, such as: “I am disturbed by the finality of death,” “Death is no doubt a grim experience,” “Death is a deliverance from pain and suffering,” and “I see death as a passage to an eternal and blessed place.” In each case, I was asked if I strongly agree, agree, moderately agree, moderately disagree, disagree, strongly disagree, or if I was undecided. I tried—I really did—but I found the test impossible to translate to my own belief system. My score was all over the place, internally contradictory, a failure of epistemological translation. Where in these questions does this belief fit? “All compounded things are subject to dissolution.” This formula is basic Buddhist doctrine, poured into me by the canon, by my teachers, by my daily life. All things are compounded and will dissolve, which means I am compounded and I will dissolve. This is not something I readily accept, and yet I am continually bombarded with the evidence. I longed to understand this fact of life, this answer to a question I didn’t learn how to ask for a long time. But does it mean that I see death as something grim? Or a passage to a blessed place? No and no.
François Rabelais was a sixteenth-century physician and writer and a most unusual priest—a questing humanist in an orthodox world. He died at the age of fifty-nine with the supposed last words: “I am going in search of a great perhaps.” Perhaps. Perhaps we fear extinction; perhaps we are doing our best at terror management. Perhaps we can hardly wait for what is overtly called the promised land. There are many forms of consolation, and many pathways of fear. Part of getting ready to die is looking at one’s innermost beliefs: faith, goodness, sin, regret, reward, metaphysical power, and very private doubts. Looking directly at a topic we may have tried not to look at our entire lives: what happens next. Epicurus insisted that we cannot ever know; there will be no one present to find out. An “I” knows that the “I” will cease to be. What “I” will be left to do whatever is to be done?
The lovely Japanese film called After Life is a fable about where people go right after they die; it turns out to be a run-down hotel in the country. People arrive one by one, a little disoriented. Each person is given a room and told that they can stay until they pick a single memory in which to live forever. Once they pick the memory, the staff re-creates it and the person settles in and disappears. Some people choose immediately and happily fade away. Another person spends days reviewing the jerky black-and-white films of his life, trying to pick one. A few people have no happy memories and just sit on their beds, lost. A few others find it impossible to decide: their lives are full. (One of the key parts of the plot is what happens to the ones who can’t decide.)
When I showed After Life to a group of people, we did what every viewer will do, and thought about which memory we would choose. I was struck by the common thread, for me and for many people: it was the moment after. Not the adventure, the experience, the fulfilled desire, but afterward. The moment of tired satisfaction, of knowing one is satisfied. The moment at the end of a good day when you are going home and are a little sore and sweaty, you are getting hungry, your feet are dirty, and you are going home to rest.
I heard a woman talking about her need to make decisions, as she was expected to die soon. Her friend asked her how she was going to do that, how she would decide.
“I don’t know,” she said, with a little wonder. “I’ve never done this before—at least, not that I remember.” Have we? Do we know how? Maybe it’s built into the organism; call it collective memory, call it a genetic trait, call it rebirth. People often seem to know the way, to remember as though dying were a skill they learned a long time ago and haven’t used in many years. But they remember. It is not entirely new.
“How long?” This urgent question can’t be answered. Not exactly. The BMJ (formerly the British Medical Journal) looked at the predictions of survival made by physicians for 1,500 people with cancer. The doctors often overestimated survival times. (Research shows that doctors, and to some extent nurses, are overly optimistic about medical treatment in general.) Prognosis is a prediction of how long a person will be sick, or how long he will live, and it does get more accurate as a person draws closer to death. No one can unfailingly predict how and when the body will finally fail. Death makes itself known like the breeze makes itself known to the mobile: every piece begins to move, and the movement of one arm pulls on another, which bounces against another until every part is slowly spinning even after the breeze has passed. The body is unfathomably complex and entangled. Bodies are unique. Every disease manifests differently from one body to the next. And yet, the closer death comes, the more universal the body seems to be, the more familiar the signs, until it becomes like walking down a street you know well.
There is always a last time. The last walk, and then the last time you walk at all. The last time you shower by yourself, and then the last time you have a shower. The last time you eat steak, and then the last time you eat solid food.
The last time you go fishing.
I met Butch when my husband became his AA sponsor, and he came to our house for Thanksgiving. It was his first family Thanksgiving dinner in decades—maybe in his life. Butch had been in prison for armed robbery for nearly thirty years. His brutal and abusive childhood gave way to a wild adolescence, drugs and crime, and finally prison. His new life out of prison was the difficult life of the ex-con, to whom we give nothing but obstacles. He was getting old, but he couldn’t get Social Security because he’d been in prison his entire adult life and hadn’t paid into the system. He didn’t qualify for most services. Finally, he found a job working for a local agency helping homeless people, many of whom were also former inmates. The job gave him enough for a little room of his own where he could have a cat—a white cat named Cleo. A room of his own, with a window. A cat to hold. A fishing pole.
What he really wanted to do was fish. Every day he could, he would get up at four in the morning, walk to the bus station with his fishing gear, and take the first bus of the day all the way to the en
d of the line. Then he walked two miles to a lake where he could fish alone in the sunlight as long as he wanted. Butch was glad to be free and glad to be sober, and he loved the sun. Nothing was easy, but it was his.
A few years after his release, Butch was diagnosed with liver cancer. He quietly refused help; he was doing fine, he didn’t need anything, thanks. But things got too hard. At last he was accepted into a home hospice program while we waited through the enrollment period for the agency where I worked. But he was already in too much trouble. A hospice nurse dropped by now and then but seemed oblivious to his struggles: the lack of food, the fact that he could not always get to the bathroom in time, that he was in pain.
It took a few tries, but my husband finally convinced Butch to come and stay at our house. By then he was unsteady and a little confused. He came with a small bag and his cat, and sat dozing on the couch while a couple of men unloaded a hospital bed and set it up in the living room. I made sure he was facing the window. From then on, he slept a lot, with Cleo curled up on the foot of the bed. He tottered to the commode, smiled, but said little. A steady stream of men came to sit with him, men who had also been in prison and struggled with drugs, and knew him from the homeless shelter and the downtown AA meetings. They were disheveled, polite, mostly sober. They smoked out on the sidewalk in small groups, sat on the porch steps, took turns holding Butch’s hand or helping him to take a sip of water. Sometimes they prayed or held an impromptu twelve-step meeting. One young man asked if he could take the night shift, and he moved in, too, and slept on the floor in the kitchen so he could hear Butch call if he needed anything.
Advice for Future Corpses_and Those Who Love Them Page 10
