When Paul Kalanathi was in treatment for cancer, he found that he had to let go of roles he wasn’t even aware of inhabiting—not just the obvious roles, like doctor, but more subtle ones, like that of the strong, active man, the leader, the decision maker. The role of being a good-looking man: “Any part of me that identified with being handsome was slowly being erased.”
We can resist this. I may be a person with cancer, a person who can no longer work or live alone or button her own shirt. I may even be a terminally ill person. But I am also a person who reads books and likes ice cream. Sick people need to not be sick people all the time. They are also plumbers, parents, students, friends, chess players. A person who has been healthy may cling to the details of these roles for a long time. (A person who has embraced the sick role may try to avoid them altogether.) Don’t forget who this person in front of you is, his complexity, her history.
Dying includes times of being very vulnerable and broken. The old self is gone. The new self is being discovered. Grief begins with diagnosis: Why me? Why not me? Coming to terms with terminal illness requires a time of darkness, a natural introspection. How this looks and how long it lasts will be different for each of us. The first and one of the hardest tasks of dying and caring for the dying is to accept that things will never be the same. Things will never be the same. The body will never be the same. Relationships will never be the same. Nothing will be the same as it was.
Yet there is liberation—an unexpected, gentle release from all kinds of rules. As the writer Marjorie Gross noted after she was diagnosed with ovarian cancer, “Suddenly, everything has a lifetime guarantee.” She doesn’t want to paint “too bleak a picture,” Gross writes, since terminal cancer has a number of benefits: “People don’t ask you to help them move” and “You never have to wait in line for anything again. Take off the hat and get whisked to the front.”
June Bingham, a playwright and author, was diagnosed with metastatic cancer at the age of eighty-eight and decided not to have treatment. She turned toward her death with wit and ease, freed, she wrote, from competition and the need to look in mirrors. She canceled the tedious visits to the dentist, eye doctor, and dermatologist that had filled too many of her days. She and her husband stopped buying theater tickets and planning day trips and, as she wrote in an essay with apparent satisfaction, ordering new stationery. They “have thrown caution to the winds and now buy 2-percent milk instead of the boring 1-percent,” she added. “We also make club sandwiches with white bread.”
This is not to say that we don’t lie to ourselves. Do I believe that my meditation practice will somehow allow me to slide past the suffering? A little bit. Do I think I can avoid the anxiety or sorrow of the diagnosis, be always in equanimity, a model to others? You bet. Loss and grief are universal; sometimes I think hubris almost is. There is no way to vaccinate ourselves. All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them. Impossible! We don’t get to skip stages or avoid pain. If I am truly honest with myself, all I have learned is to see how much I want to avoid not only pain but being seen to want to avoid it.
Bargaining, which comes and goes, may be done in secret. A private prayer, a secret vow, a promise only the dying person knows. Dying people don’t lose hope; it just changes. First, you hope for a mistake. What a quack that doctor is. How could the lab mix things up that way? Next, you hope for a cure. A new treatment. A miracle! Hope is a lot like fear; both are based on what might happen. Hoping for a cure and fearing there isn’t one are versions of the same thought: I’m not going to die. Honest hope is hope for good days, for a chance to finish a project, see a person one more time, get to the nephew’s graduation, repair a broken friendship. Write a song. Clean a closet. Hope never goes away. Adults in both the United States and New Zealand, where the seasons are reversed, are still more likely to die of natural causes between Christmas and New Year’s than at any other time of the year. Holidays matter. In time, a person who is terminally ill will start hoping simply for time, and comforts: to walk a few steps, eat, take Communion, have one more bowl of ice cream.
The changes we experience with dying from a long illness depend on the cause, but certain ones are common to almost everyone. Fatigue is our companion. Fatigue is not tiredness or lack of sleep. It is not depression. Fatigue in advanced disease is mysterious; one textbook lists nine different theories to explain it. For one, it may be partly anemia; for another, an accumulation of toxins, and for another, fatigue follows treatment; cancer chemotherapy is notorious for this. But fatigue is more than these obvious physical changes. True fatigue seems to steal the vital, core energy. One literally lacks. Fatigue is persistent, intense, distressing—a lack of energy so complete, people may have trouble opening their eyes, lifting a hand, speaking. If you are tired, you may not want to climb the stairs, but you will if the baby is crying or the fire alarm goes off. If you are fatigued, you may not able to climb the stairs no matter what.
Mild, regular exercise helps. This doesn’t necessarily mean the treadmill. It might mean going to work one or two days a week, a slow walk around the block, or simply sitting up for a meal. Exercise is whatever puts a little stress on the body, stretches you just a little. Mainly, you adjust. You are left out of things. You begin to see the way you identify yourself with what you are able to do. (What not to say: I’m going to Bermuda this summer. What are you doing for vacation?)
Fatigue changes things, but it doesn’t stop everything. Carol went on a safari to South Africa the year before she died, in the midst of chemotherapy. She had wanted to go on that trip for many years, had saved money and planned it in great detail, and even when she spiked a fever just before they left, she went. The trip wasn’t what she’d imagined: she had to calculate everything from the number of miles she could travel in a day to the kind of food she was able to eat. But she went on that damned safari. Seven months before she died, we went to Belize. We traveled much more slowly than we used to, took more days off. She slept a lot. But we rode the bus down the Hummingbird Highway and took the fast little boat out to the islands. We dove—not as frequently as before, or as deep or for as long, but we were in the water every day. On Carol’s last scuba dive, we didn’t go far. The water was transparent and warm, a pale blue and gold. We held hands, because she felt safer that way, and just looked at this world we had come to know and explored together. We both knew it was the last time. I helped her to climb up the ladder that she used to scramble up without a thought. But there we were, on our beloved blue water, sticky and wet and tired, very tired, and glad.
Pain. The most common fear, but often the fear is not realistic. Aging and terminal illness are not necessarily painful. I see many people in their eighties and nineties who are comfortable on a dose or two of acetaminophen every day. People who are dying often say they have no pain. A lot of the recent writing in the so-called death awareness movement tells terrible stories of people screaming in pain, abandoned to their suffering. I believe this happens, but I want you to believe that it doesn’t have to happen. Research in hospice and palliative care shows that only about one in a hundred people has uncontrolled pain while dying. That doesn’t mean no one has pain. It means that ninety-nine out of a hundred people who do have pain get relief. It is so manageable that a patient can sue a doctor if they have uncontrolled pain. If you hear such stories—He was screaming in pain!—you are almost always hearing a story about medical and nursing neglect.
For many people, pain is annoying. An irritation. For others, simply being too cold feels like a wound, and pain is hard to bear. For one person, pain means I’m in trouble; for another, pain means I’m still alive. What does the pain mean to the person who has it? People with chronic pain, such as from rheumatoid arthritis, are at risk for undertreatment of pain. They may not show signs; they have adapted, and may not grimace or moan even when the pain is difficult. Watch for more subtle signs, like muscle tension. Men are also at risk f
or being undertreated, reluctant to admit to having pain, because it seems like a sign of weakness. (I have found that men are more willing to take pain medication when I point out that their blood pressure has gone up.)
Pain is subjective. Pain is what a person says it is. Do not judge; you can’t know. A person may appear quite comfortable and relaxed and say they have pain. They may look wretched and deny pain. You have to trust the person. People who are dying are not drug seekers: they aren’t looking to get high; they aren’t malingering. I know there are a lot of people who believe that there is some kind of moral lesson in having pain or that treating pain is a sign of inner weakness or that you must stay awake in order to die well or that God will never give you more than you can handle. Rubbish. Treat the pain until the pain is controlled, and if your doctor refuses to work with you until your pain is controlled, get a new doctor.
Pain doesn’t always require strong drugs. Regular doses of acetaminophen are useful and safe in the recommended dose for most people. Cannabis is a great pain medication for many people. Meditation, visualization, and regular mild exercise can all help with pain. But there’s no reason to fear narcotics if they’re needed.
In medical terms, morphine is the gold standard for pain control. That means all other narcotic drugs are measured against it. In the early nineteenth century, what we now call morphine was isolated from opium, which is found in the juice of poppy seedpods—as natural as a medicine can be, if that is important to you. Since then, morphine has been used as an analgesic for severe pain—used and sometimes misused. The Brompton cocktail, a combination of morphine and cocaine, was created in the nineteenth century to treat advanced cancer. Then these two drugs were combined with alcohol, sugar, and chloroform water. In the 1950s, Cicely Saunders, leader of the nascent hospice movement in England, recommended a similar mixture, but included a tincture of cannabis. Morphine, cocaine, alcohol, sugar, chloroform, and cannabis in one nice mix; I have to assume this helped in some way. Various Brompton-type formulas became common in the United Kingdom in the 1960s and 1970s and then in the United States. But, over time, research on various combinations showed that you could take out each piece except the morphine and get the same pain relief. It was the morphine that counted.
Today, morphine in various forms is one of the most common drugs given to terminally ill people, particularly useful for pain from cancer, bone diseases, and organ failure. Morphine is cheap, comes in both short-acting and long-acting types, and is well understood—very safe when given properly.
The most common side effect of opiate drugs is sedation. This often goes away with a few days of regular use, but opiates of all kinds raise the question of balance. Do you prefer being sleepy and pain-free? Or can you tolerate moderate pain in order to be alert all day? This is the kind of information that should go in your advance directive. Morphine also causes mood changes, generally a sense of well-being or euphoria, but some people feel depressed. A few people have itching or nausea. Constipation is common.
I’m afraid of becoming addicted. Worrying about addiction is a kind of magical thinking, projecting into a future that is not really up for consideration. But, more to the point, it’s very unlikely. Addiction is marked by harmful, compulsive behavior, an overwhelming need to feel the effect of the drug. Addiction is a social as well as a physical disease. If people begin to use the drug for the emotional effect, addiction can happen. If you use pain medications as they are intended—to control pain—you’re not an addict.
Changes in the body do happen. When we use any of a number of drugs over time, the body will develop tolerance. Tolerance means that the liver is producing enzymes to metabolize the drug; over time, higher doses will be needed for the same effect. With opiates, there are also changes in brain biochemistry that reduce a drug’s effectiveness over time. Tolerance is not addiction, and it happens with nonnarcotic drugs as well. In the last few weeks or days of life, a person may take doses of morphine almost hourly to help with pain and with breathing. There is no true upper limit to the dose. In time, the body will also develop dependence. Dependence means that if the drug is abruptly taken away, there will be symptoms of withdrawal. Dependence by itself is not addiction, and happens with many drugs. Dependence is readily managed by reducing the amount of drug being used over time. A dying person usually has no reason to be concerned about it.
The body has a variety of opioid receptors scattered throughout the central nervous system, so morphine has other uses besides pain control. At low doses, it can suppress a chronic cough. In a way not entirely understood, morphine makes it easier for people struggling with shortness of breath to breathe more easily. Morphine slows the movements of the entire digestive system; a tincture of opium is sometimes used for severe diarrhea. For that reason, constipation is the bane of all opiates, the one side effect that never gets better. Morphine should always be prescribed with bowel medications.
And on that note: Did you flinch when you read the word bowel? Adults go to the bathroom alone. Adults don’t soil themselves. When an adult is unable to do these things, she may feel terrible anger and shame. But sooner or later, for every single person who dies, the dying will take this control away. A person may have constipation or diarrhea or both, from the illness and from medications. He may be physically unable to control himself or even recognize the physical signals anymore. If you are going to help someone who is dying, you should be prepared to help in the toilet. Know if you have a problem with this, and be honest. If you can’t be calm and cheerful in the bathroom, don’t help. Don’t ever say: Time to change your diaper!
Here’s something else not to say: You’re so lucky to have lost weight. Weight loss is normal toward the end of life. Loss of appetite—technically called anorexia—is almost universal, and certain diseases cause wasting.
A dying person may be nauseated. You can have nausea and not vomit; you can vomit without feeling nauseated; but often they go together. Most of the time, if a person has persistent nausea or vomiting, there is more than one cause: disease, like cancer; medications, like antibiotics; constipation; congestive heart failure; fluid and electrolyte imbalances; anxiety—and many other things. Nausea is very easily triggered. When I gave chemotherapy, I found that people would vomit at the smell of the alcohol pad. Be very careful about odors. Don’t assume that what was pleasant last week is pleasant today. Smell is the most evocative of senses; the volatile molecules of the world enter us, literally, triggering memory and emotion, desire and disgust. Take this change seriously; it hurts to lose the pleasures of smell. Ask in advance about bringing food or flowers or using bath salts, don’t wear perfume, and be careful about anything that has a strong smell. You don’t want to be the most nauseating thing that happens in the day.
Nausea is subjective, like pain; believe what you are told. Because it often has more than one cause, it may be best dealt with by more than one medication. Lorazepam, an antianxiety drug, can help with nausea. Steroids are sometimes used. Remember that morphine can cause nausea. If one drug doesn’t work, try another, or a combination. Don’t give up. You may need to use a suppository or even an IV to get control of severe nausea. If you are vomiting, you can’t keep the pills to stop the vomiting in your stomach.
Meanwhile, try this: marijuana. Pot is the most effective drug for many people, and you won’t know if it works for you until you try it. Some people think its sedating qualities aren’t worth the anti-nausea effect, but others aren’t bothered by that. Try a cool, damp cloth on the forehead. Lying flat after a meal. Sitting up after a meal. Fresh air. Bland foods. Meditation. Acupuncture. Distraction—and I’m serious about that. Distraction really works. Take a slow walk, talk about a novel, play a video game. Experiment. Keep trying. Nausea can be a difficult symptom to manage, but not impossible.
We eat together. As universal as any human behavior is the common meal. Nausea, loss of appetite, and the resultant weight loss are distressing, since they are unavoidable signs of change. S
ometimes family members are more bothered by the loss of appetite than anything else. We feed each other and share meals as an expression of love; during serious illness, making a meal can seem like the only way to help when nothing else can be done. It can be difficult to translate this intimacy into other ways of being together. I’ve seen family members bullying and belittling a sick person, even going into a panic as they realize what not eating implies.
This change can’t be easily ignored. You have to face it. If you are helping with meals for a sick person, the most important thing to remember is that the sick person gets to decide what and how much she eats. Don’t say: If you really wanted to get well, you’d eat. You can help a lot by making meals with small portions, setting a nice table, and then eating with the person. No one really wants to eat when they are surrounded by worried people who are urging them to eat. Eating together slows down your conversation, helps everyone relax, and builds trust. Share the meal.
Dying is a state of ongoing loss. Hair, teeth, erections. The ability to tie shoes or carry groceries. Breasts. Vision. Attention span. The evening walk. Driving. The strength to climb stairs, to do the laundry and housework. Bladder control, a sense of smell, balance. Relationships disappear, plans are revoked, social roles are extinguished.
One study found that 77 percent of terminally ill people were depressed. Another study found that only 15 percent of terminally ill people were depressed. Other studies fall everywhere in between these numbers. Are dying people depressed? How is depression defined and measured? How are those measurements interpreted? A person says, I’m ready to die. One witness pulls up a chair with interest; here is a sign of acceptance. Another witness sounds the alarm: Quick, suicide watch! Depression can be a rational response to a difficult situation. All of us will have periods of depression after a loss, like a breakup or unemployment. Most of us come out of that depression as time passes and the situation changes. Depression can be caused by medications or organic changes in the brain. Many signs of a clinical depression—withdrawal from social relationships, losing interest in typical activities, talking less, eating less, sleeping more, and so on—look a lot like the late stages of dying.
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