when hope is not helpful
The next four chapters look at attitudes people often adopt in the face of death which, while not wrong, and in fact quite natural, often make death and the decisions that surround it more difficult. By simply being aware of these behaviors we can watch for them in ourselves and, perhaps, keep them in check. The first of these is hope.
For centuries, doctors and patients alike took the Cartesian view that the body was simply a cluster of parts working independently of the mind. The mind, and all that came with it—stress, fear, hope, anger, sadness—was thought to have no effect on the machinery of the body. Emotional responses were seen as nothing more than annoyances, something a doctor could ignore and a patient had to bear.
But our thinking on all this has changed. In the past few decades, it has become increasingly evident that the mind is affected by the body, and the body is influenced, sometimes deeply, by the mind. Researchers have discovered that illness and chronic pain can trigger or worsen depression and anxiety, and that oppressive emotions can contribute to disease. Most of us don’t need scientific studies to tell us this. We know it from personal experience. We are more apt to get colds when we are exhausted, asthma attacks when we are stressed, and cold sores when we are anxious.
More recently, doctors and other observers have taken this a step further and suggested that not only do “bad” emotions affect our health, but “good” ones seem to have an impact as well. Through books such as Norman Cousins’s Anatomy of an Illness, Bernie Siegel’s Love, Medicine and Miracles, and Bill Moyers’s Healing and the Mind, we have learned that positive emotions can actually be healing. Love, friendship, optimism, and a strong spirit apparently help us battle disease and stay healthy.
In addition to a patient’s general frame of mind, his belief in the power of a particular treatment also seems to have a measurable effect. Doctors have known for some time that patients who think that they are receiving an effective treatment, even when they are not, often show signs of improvement, or at least get worse more slowly—something called the “placebo effect”—a placebo being a dummy pill or treatment. Researchers claim that patients receiving nothing but fake treatments have actually grown hair, avoided allergic reactions, recovered from depression, and escaped asthma attacks. Similarly, patients who falsely believed that they were exposed to allergens or infections actually developed rashes, nausea, pain, and other symptoms, even though actual exposure never occurred.
Given all this talk about the power of the mind and, particularly, the power of positive thinking, it may seem odd that something as fortifying as hope could contribute to a bad death. The fact is, hope is good; it is vital to any patient, or to any person, for that matter. But when we stubbornly and rigidly cling to hope that is unrealistic, it is no longer hope, but desperation, and this can have devastating effects, both on the patient’s mood and on his course of treatment. As you will see, in the voyage from the first office visit to the bedside of a terminally ill patient, the distortion of hope is understandable, and almost inevitable unless we have a very good guide or some real understanding of the nature and benefits of hope. The scene painted here also shows, as an important aside, that quite often the way we die is not the fault of one doctor or one family member or one bad call; it is the result of a series of subtle comments and misunderstandings.
A doctor, test results in hand, stands in his office feeling uneasy. He (or she) is just about to relay some very bad news and does not want to devastate the patient. When the patient comes in and sits down, the doctor looks for some way to soften the blow and to give this poor person some hope. He explains the test results and the diagnosis and perhaps mentions that this is a serious situation, but then, sensing the patient’s anguish, he moves on quickly to discuss treatment options and possibilities. He mentions a particular treatment that has helped some patients, or an experimental therapy that has unknown benefits. He presents statistics, but focuses on the positive—the patients who have survived or done better than the others. For example, rather than saying that most people with this disease die within a year, he points out that some patients have survived for many years. Perhaps he uses expressions like “effective treatment” and “remission” and “promising intervention,” and cushions his words with phrases like “it seems” or “it is uncertain” or “let’s see what further tests show.” The doctor is not trying to mislead the patient in any way; he is simply trying to make this as easy as possible and to give the patient hope. And the truth is, at this point, there may be room for this sort of hope.
Doctors are criticized for not being more honest with their patients, but the truth is that in many cases they simply don’t know what the future holds. And even if they have a good guess, it’s hard news to deliver. Imagine yourself in the doctor’s place, telling someone you hardly know, or worse, someone you know very well, that they have a potentially fatal disease.
Dr. Elizabeth Beautyman, an internist at Roosevelt Hospital in New York, who often deals with leukemia patients, says that it’s a grim task. “When you’re first telling someone that they have leukemia, they’ve gone from a completely happy, normal, worry-free existence to being told they have something which they know in the back of their mind is terminal,” she says. “You have to give them some hope. You have to emphasize the positive so they can cope with all they need to cope with in the days ahead.
“It’s a horrible illness to have and the treatment is difficult,” Dr. Beautyman says. When she first relates the diagnosis, patients sometimes fall apart, sobbing in her office, so she struggles to give them something positive, some bit of hope, they can hang on to. “I tell patients that there is a 70 percent chance of them going into complete remission,” she says. Seventy percent sounds promising. But then she explains: “Of course, complete remission doesn’t mean cure. There’s a lot of relapse that happens and without further treatment, in two years they will be sick again.
“It’s very hard to deliver bad news,” she adds, “and the messenger often doesn’t get it right no matter what they do.”
Meanwhile, no matter what dreadful diagnosis has been handed down, the patient in our scenario is in complete shock. The doctor is talking, but his words are lost in a swelling sea of sadness and disbelief. This cannot be happening. It cannot be true. It is not possible. There must be a way out of it. The doctor’s words drone on, but the patient hears only snippets of what is being said. He is trying to stay afloat, to regain some balance. He is picturing his wife, his children, his future. His mind drifts through the facts and possibilities that are being presented, ignoring that which it can’t yet fathom, and grabbing hold of anything that might make this nightmare more bearable.
Of course, the patient will find more hope if that is what the doctor is offering, if that is how the information is presented. But even if the doctor doesn’t sugarcoat the news, even if he is excruciatingly blunt about the situation, a patient will often block out what he can’t bear to hear, insist that the doctor is wrong, or find some statistic or theory or case that suggests a cure.
“Patients don’t listen because they don’t want to hear bad news. That’s clearly the truth,” says Dr. David Weissman, an oncologist who directs the palliative care program at the Medical College of Wisconsin in Milwaukee. In his days as a full-time oncologist, Dr. Weissman says he often found himself talking to people about chemotherapy that he knew would not be effective, but “they really wanted it because they were looking for hope.”
Who wouldn’t respond in such a way? Dr. Kübler-Ross says that denial is not only a natural response at this point in an illness, but a necessary one—one that doctors should expect. The psyche is incapable of digesting so much bad news at one moment, so the patient hears information selectively, and directs all of his questions toward hope—the chance that the diagnosis is wrong, the opportunities for surgery, the probability that a certain medication will help, the new study that just came out, the patients who have survived.
In any case, the doctor in our scenario feels that he has presented the situation clearly, but as time passes, he sees that the patient remains focused on the slim odds of survival and on treatment options. The patient isn’t asking about palliative care. He isn’t acknowledging any possibility of death. He is interested only in finding a treatment. Quite honestly, the doctor is accustomed to this route and he is glad that the patient has hope. Who knows, even under dire circumstances this patient might do better than others, and having hope, as far as the doctor is concerned, is vitally important. Throughout their training and careers, doctors are taught—if not explicitly, then implicitly—that they must maintain a patient’s hope, even if they know that such hope is unrealistic.
“There’s a widespread belief among doctors that hope is the most important thing and that there’s no real cost to allowing patients to have somewhat unrealistic expectations about their prognosis,” says Dr. Jane Weeks, director of the Center for Outcomes and Policy Research at the Dana-Farber Cancer Institute in Boston. “We all want to leave a patient with some hope. It’s a nice thing to give a patient. The question is, is there a cost to that?”
As we will see, there is a cost, but for the moment let’s return to our scenario. The doctor and patient have established a rapport, but family members are also in the picture. Somewhere along the course of this illness they realize, on some level, that the illness is terminal, or possibly terminal, and maybe they even mention this out of the patient’s earshot. Yet, at the same time, they can’t fathom that this person—a person whom they love dearly, a person who is a fixed part of their lives—could actually die. It can’t be. It’s not possible.
Feeling helpless and distressed, they turn to the doctor for reassurance. “What can be done?” they ask. “What sorts of treatments are available?” They wait expectantly. The doctor may be more upfront with the family than he is with the patient, but he wants to be kind and he senses their need to take action, so once again, he couches his words in hope. He tells the family that the patient seems to be doing well, that he is strong, that this or that treatment might help, that some patients survive for many years. Family members, like the patient, embrace any sliver of optimism. They, too, hear selectively and focus on what might be. They are determined to help their loved one. They will get the best care possible for him. They will fight to keep him alive. And they will make sure that he has hope.
They don’t talk about “end-of-life” care; they talk about “prolonging-life” care. They talk about the next test, the next treatment, the good signs. They talk about getting stronger or better. They talk about the future. They don’t discuss the possibility of death because it is too painful, because they want to maintain hope, and because they don’t want to believe that death is a possibility. They are so focused on keeping the patient hopeful that, in many cases, they not only stress the positives, they hide the negatives.
Sharon Tompkins remembers clearly the day she discovered, out of the blue, that her first husband, Aram, had incurable brain cancer. The couple were standing on the rocky steps of a canal in Key West, Florida, pulling on their snorkeling fins, when Aram, who was 53 at the time, suddenly made a strange face and his head began to twitch. At first Sharon thought her husband was clowning around, but then she realized that he was not grimacing on purpose and that, furthermore, he could not speak. After many stressful hours, Sharon stood in a doctor’s office at the Miami Heart Institute staring at a blotchy gray scan of her husband’s brain.
The doctor pointed to a small, white blur and explained that Aram had “the most serious kind of tumor and it doesn’t respond to treatment.” The average life span for someone in his situation was two months to two years. Sharon could barely breathe.
She gathered herself and walked into the hallway, where her husband sat waiting in a wheelchair. She looked at him, tried to clear her face of anguish, and told him that the doctors had found “a growth.”
“I didn’t tell him that this was the worst kind of tumor that didn’t respond to treatment,” she said. “I didn’t feel that was something that he really needed to know because, why take away hope? I said to him, ‘We don’t know what it is, it could be malignant, it could be benign, but there’s a growth.’” In the eleven months of her husband’s illness until his death (which actually took place at home and was loving and tender), Sharon doesn’t remember ever telling him his prognosis.
We hide or dilute the facts—or refuse to learn them in the first place—to protect ourselves and to protect the patient. We do it because at this moment we love this person more than anything in the world. We do it because we can’t face what is happening and we certainly don’t want the patient to have to face it.
The problem is that people have the right to information about their own health. They need to know what’s happening so that they can make decisions about how they will proceed. And they need the option of discussing the truth with their loved ones so that they can pursue any goals they might have, and begin to accept what is happening.
The irony is, the patient does know. In virtually every case, no matter what is said or unsaid, the patient knows the truth—in fact, knows it better than anyone else.
“Time after time patients recount to doctors, including me, how they have known almost since they first went to their doctor but kept up the pretense of ignorance, not so much for their own sake but for the sake of others, particularly the family—but also for the doctor,” Dr. Doyle says in Caring for a Dying Relative.
The patient often agrees to more treatments and consults and tests because he is too exhausted to fight, too sick to care, and too afraid to upset anyone more than he already has. Being the “good” patient, he goes along with whatever is suggested and adopts whatever attitude is expected of him. His family, the doctor, the nurses, and other health care professionals admire him for his “fighting spirit.” They like that he is hopeful, and so, that is what he will be. They want him to continue treatment, and so that is what he will do.
“I can’t tell you how many people get chemotherapy not because they want it, but because they think their family wants them to get it,” Dr. Weissman says. “We had a young girl, 24, recently on our unit. Bad cancer. Clearly dying. The family wanted her to get another round of chemotherapy. The personal physician wasn’t coming to see her. The doctors who were taking care of her in the hospital weren’t sure what to do. I was asked to see her solely for pain. I walked in and she looked terrible. I said, ‘What are you thinking about?’ and she said, ‘I want to go home.’ She’d been in the hospital for about three weeks at this point. I said, ‘You know what that means?’ She said ‘Yes.’ I said, ‘You’re dying.’ She said, ‘Yes, I know. I want to go home. That’s what I want right now.’ We talked about that and I said, ‘How do your parents feel about that?’ She said something to the effect of, ‘They’ll get over it.’ She said they’d have a hard time. She said, ‘I’m tired. I don’t want any more tests. I don’t want any more needles. I don’t want any more.’
“You have to give them permission sometimes,” Dr. Weissman says. “You have to either say it for them or give them permission to say it. It’s never a surprise to people that they are dying. They always know. But they’ve not been able to verbalize it. They’ve been waiting for some doctor to tell them, so they really know. Many people will say, ‘Gee, I thought so.’ ”
Unfortunately, in most cases, no one opens the door to such straightforward conversation. They don’t offer the information or consider the fact that the patient might like to have such information. They don’t discuss the patient’s prognosis, his needs, the goals of treatment, or the possibility of hospice or other palliative care. They don’t venture into such taboo terrain because it is too painful, because they don’t want to upset each other, and because they want to maintain hope.
Clearly, hope has enormous value and patients should absolutely be encouraged to be hopeful. The problem is not that people have hope; the problem is that they don’t always differentiate between false and realistic hope. All too often what they consider to be hope is actually deception.
In the early stages of an illness, when there is much information and emotion to digest, denial and unrealistic optimism are not bad. But too often that optimism becomes a pattern, an obsession and, finally, a lie. The lie is planted without malice, but once it is established, no one dares uproot it. The patient is not healed by this lie, this forced hope. He is not uplifted or bolstered by it. Instead, he is isolated. Silenced. Shut off. Forced into complacency. He is left with no one with whom he can speak honestly, he is forced to be “optimistic,” he is left feeling as if he were somehow to blame for this disease—If only he were more positive he would get well—and he is left getting medical treatments that are not necessarily what he wanted.
Dr. Weeks and her colleagues followed 917 terminally ill cancer patients and found that, indeed, hope does have a cost, not only in terms of emotional isolation, but in terms of the medical decisions that are made. According to the report, most patients in the study had unrealistic beliefs about their odds of survival and, based on those beliefs, opted for aggressive treatments. In other words, patients believed that their illness was not as serious as it was and that the treatments held more promise than they did.
“Patients didn’t have a good understanding of their prognosis, which is information that they needed to make choices that were right for them,” Dr. Weeks says. The study did not examine why patients had such unwarranted optimism, but Dr. Weeks suggests that it was due to a combination of factors—doctors offering undue optimism, and patients choosing to believe what they wanted.
As we’ve seen, this dance is complex. Each person takes his cues from the others, but he takes those cues selectively because he is unsure of how to proceed, reluctant to acknowledge the prospect of death, and trying as best as he can to sustain this magical thing called hope.
the changing nature of hope
First of all, let’s be clear about what hope can and cannot do. Hope cannot cure terminal cancer or emphysema or a life-threatening blockage. Hope cannot shrink an aggressive tumor or eradicate a life-threatening infection. What hope can do is possibly give the immune system a little extra oomph, so that the body can put up a better fight. Even more vital than that, however, hope helps a person cope with a terrible situation. It helps him to live as fully as he can, to tend to important matters, to see value in life, and to rise to face each day. The presence of hope is what distinguishes sadness, which is perfectly normal, from depression, which is paralyzing.
But in order for hope to have any benefit at all, it has to be based in reality. It has to be honest. We tend to operate within an extremely narrow definition of hope—the hope of beating death. But a person can have strong and fulfilling hope for all sorts of things. She might hope to finish a project, to see a grandchild born, or to make amends with a friend. Just because a person accepts that she will die does not mean that she is without hope.
A person can hope for all sorts of things and what she hopes for will probably change with time. In the early stages of a disease, a patient might hope for a cure. When that doesn’t seem probable, she might hope to retain certain abilities, such as walking or living independently, for as long as possible. As the disease progresses further, she might hope to live until a certain date, such as an anniversary or a special holiday. As she grows more ill, she might hope that she will be free of pain and distressing symptoms, or that her loved ones will stay with her until the end. A dying patient may hope that her life has had meaning or that she will be remembered kindly or that she will gain closer unity with God.
Given the chance, people will adjust their goals, but not neatly along a continuum, like the one described above. Death and grief experts say that people go through stages when they are dying or grieving a death, starting with denial (This can’t be happening), moving through anger (Why me?), bargaining (God, I’ll be really good if you let me get better), and depression, until, if they are lucky, they reach acceptance. But they don’t slide along, moving neatly from one response to the next in line. They go from one reaction to the other and back to a previous one—accepting, then angry, then bargaining, then depressed, then denying, and then accepting again.
The human mind is masterful at juggling a variety of beliefs and hopes at once, even seemingly contradictory ones. In some part of the brain people know that death is inevitable; in another part, they know that death is not possible. So when they talk of a cure or a long future, they are not lying to themselves or others; they are simply tuning into this other channel, this more pleasant and perhaps wistful part of the mind. It’s a little like talking about winning the lottery. The possibility is remote, but it feels good to think about. It’s a nice place to be. The trouble comes when the person says, “I’m going to win the jackpot,” and others nod eagerly and say, “Oh yes, we are absolutely sure that you will.” Or worse, he says that he probably won’t win and they say, “Don’t talk like that.” They have not bolstered his hope of winning; they have created a credibility gap. My word, he thinks, they really believe this. Now it is on his shoulders not to let them down, and not to stray from this dream of “winning.” If instead friends responded to his hopeful thinking by saying, “That would be great,” and were open to his more honest moments, saying something like, “Does that scare you?” or simply, “Do you think so?” they would have allowed him to be wherever he needed to be, wistful or practical, without closing the door to other discussions.
We, the loved ones and others involved in a patient’s care, need to find a way to embrace hope without creating deception. We need to allow dreaming without shutting off reality. We need to allow fear without becoming hopeless. We admire the “winning attitude,” the patient who keeps up “the fight,” but we also need to realize that just because a person accepts the severity of an illness does not mean she has lost hope or “given up.” She has simply shifted her energies so that now, rather than fighting a disease, she may be fighting pain, isolation, and fear, or she may be working toward resolution, completion, or peace at the end of life.
Finally, although we tend to focus on hope, we need to remember that it is only one component of a “positive attitude.” And when it comes to dying, it may not be the most important one. Yes, hope (real hope) is a good thing to have. But just as important, and integrally connected, are intimacy, honesty, spirituality, and joy of life. Just as people need hope, they also need to feel that they can be open, that they have the support of those they love, and that they are not alone.
As family members and friends, we need to have hope and to encourage hope, but we also need to be honest with the patient. We need to listen to him, recognize where he is and where his hopes lie, and be supportive of his goals, whatever they are and however they may fluctuate. We need to maintain his hope not by establishing unrealistic expectations but by valuing life and assuring him that we are with him and will continue to be with him, wherever this journey might lead.
carol’s story
Carol Tatkon, a senior vice president at Exxon, was a mover and shaker in life. She was a brilliant woman who dealt with issues promptly, swiftly, and matter-of-factly. After a dinner party she’d go into the kitchen, assess the mess, set a timer for 12 minutes and say to her sister, “If it takes more than 12 minutes to clean this up, it’s taking too long.”
At 55, Carol was diagnosed with bladder cancer. She sought out medical care from oncologists at M.D. Anderson Cancer Center in Houston, Texas, one of the most renowned cancer centers in the world. Surgeons removed her bladder and she received chemotherapy for six months. She was fine after that—for 15 months. In August of 1995 the cancer reemerged in other parts of her body. She had more chemotherapy and then, the following March, she underwent aggressive surgery. As she explained it, doctors cut her open “from the chest all the way to the crotch” so they could “scoop out” whatever cancer they found. She was thrilled with the idea; her doctors told her that this could rid her of the disease completely. However, when the surgeon opened her up, he found so much cancer throughout her body that he simply stitched her back up without “scooping out” anything at all.
As Carol lay recuperating, the surgeon told her family that she had perhaps six months to live. When the news was later relayed to Carol, she was deeply saddened, but seemingly accepting of it. However, a couple of days later she saw her oncologist, who was undaunted by the results of the surgery and ignored the surgeon’s prognosis. Carol’s sister, Cathy Clark, says that he was extremely optimistic and determined to “make Carol better, to cure her.”
Despite the surgeon’s comments only days earlier, Carol didn’t question the oncologist’s optimism. In fact, she embraced it. She went on to try more chemotherapy, a new cancer drug that had just come on the market, and then more surgery to remove “tumors the size of tennis balls,” as she put it, from her upper leg.
By December the news was very bad. Carol told me that she wasn’t a good candidate for surgery or radiation because the cancer was so widespread, and that she had already received the highest dose of chemo available without success. “They’re saying it’s a very pervasive, persistent, resistant cancer,” she said. Despite all this, she did not acknowledge that it was fatal or that nothing more could be done to fight the disease. “We’re in a period where we’re trying to gather research,” she said.
I asked Carol how her 28-year-old daughter, Heather, was coping with this. “She kind of plays off me,” she said, “and I tell her that I’m going to get well.”
Six months later, Carol was still hoping for a cure when her oncologist suggested that she contact a local hospice. But, according to Cathy, the doctor still didn’t admit that Carol’s illness was fatal. What he said was that hospice could take care of her until she was strong enough to come back for more treatment.
Carol tried hospice for one day and, because she was still searching for a cure, she decided that it wasn’t for her. She could get stronger on her own. So she flew up to Massachusetts to be with her family until she could resume treatment. She died three months later.
Carol didn’t have a bad death. She made choices. She lived fully and she was well cared for by her family and friends. She did not die alone in the hospital; in fact, in the last month of her life she did hook up with a hospice program and died at home with her sister at her side. But she certainly received a lot of very invasive treatment that was of questionable value along the way. She suffered a lot of unnecessary pain and disability. She focused only on being cured. And her primary doctor apparently failed to give her clear information about what was happening, what her choices were, and what the future held. He talked about cures when the other doctors said it wasn’t possible; he referred her to hospice but suggested it was a way “to get stronger”; he talked about treatments when none were available.
Carol wanted to fight her disease aggressively and so she sought out a doctor who could give her every weapon available. The doctor, in turn, fed her hope that those weapons would be effective and that more weapons stood in wait. Carol believed him and used everything he offered. She didn’t press for more information and he didn’t give it to her. A week before she died, Carol turned to her sister and said, “I should have read more about this death and dying stuff.”
“If you told Carol five years ago that she was going to do all this she would have said, ‘No way. I’m not going to have it dragged out like that,’ ” Cathy said. “She said a couple of times, ‘If this chemo doesn’t work, that’s it. This is ridiculous.’ And then she’d do the next one…. Her oncologist always had something else up his sleeve. I don’t know if this was a game they were playing or not. I remember thinking, ‘He’s not serving Carol.’ But who knows? Maybe that’s what was best for her.”