Excerpts From The Book

CHAPTER SIX
DETOXIFYING DYING

"I'm not afraid of dying, I just don't want to be there when it happens." Woody Allen

I was sixteen when my grandfather lay dying in a hospital of heart disease. We were friendly with one another, but had not been especially close, largely because I had chosen not to follow in his orthodox religious footsteps. I knew that disappointed him. During our last conversation he asked me about my plans in life and I talked about school and my future. He turned and looked at me and said, "You know David, we each have to thank God in our own way".

I have always been grateful for that benediction, in which my Grandfather expressed his respect for my way of life and at the same time tied it to his. How sad it would have been had I not had the opportunity to have that final discussion with him. Yet very often, our denial of the imminence of death deprives us of such opportunities.

A cancer patient of mine whose husband had died five years earlier remains bitterly unhappy over such a missed opportunity. Her husband called to her from his hospital bed and said, "Look, I know I don't have long to live, there are some things I want to discuss with you." "No, no," she replied, "Things will be fine, you just get some rest". He went to his grave with what he wanted to talk over with her, and that plagues his widow to this day.

Think back to a time when you lost someone you cared deeply about. Consider how precious were the last moments you spent with that person, and the sense of things being unfinished after they had died. A mistaken impression could not be corrected. Your appreciation of what they had done for you could no longer be expressed. You couldn't share with them some exciting new occurrence in your life or commiserate about a problem.

Most people, looking back, find the last moments of life spent with someone they care about an especially precious time, one they treasure later in life. Such moments can steady and guide one later on. Just as the law recognizes that there is something special about a death bed statement, that people are liable to speak the truth when they are facing the infinite, there is a kind of directness and importance to the time one spends with the dying person that gives it a weight, a staying power with the living.

Ellen is quite ill with advanced breast cancer. She has been an adventurous and physically vigorous woman all of her life, relishing hiking and the outdoors. Just prior to a long-planned trip to Death Valley when the cacti were in bloom, she hesitated to go. During a long conversation, her grown daughter asked her whether she had any regrets about not having done things. Her daughter is thinking of joining the Peace Corps in a year or two. Clearly she is identifying with her mother, and trying to balance in her own life risks taken versus opportunities missed. Ellen took her journey to Death Valley, and enjoyed it. The image of blossoms in that arid land is apt. The vast, sandy landscape highlights their beauty. Ellen and her daughter had an important discussion, one which will guide her daughter, because they both knew that her life was limited. She died eight months later.

Death is so absolute and overwhelming that the last moments can be precious, even if there is barely a relationship between people.

Two years after an accident in which a section of a plane blew out at twenty-two thousand feet, and nine passengers were sucked out of the plane to their deaths, a flight attendant cried as she recalled having had the last conversation with a young man who was about to die. She had made a noise which had woken him from sleep, as he opened his eyes sleepily, she said, "I am sorry". That was all. But she tearfully reflected that it was his last human contact before being swept out of the plane and into the aircraft engine less than a minute later.

Such moments are transforming. We feel deeply for the person who died and also feel deeply our own vulnerability. There, but for the grace of God, go I.

Death Anxiety

What could be more terrifying than the prospect of dying? It is a topic that most people don't like to talk about, much less think about. Indeed we lead our lives pretending that it will never come to us. We use words that belie nonexistence, like "He passed away". We tell children that the favorite pet "went to sleep". This not only provides the false comfort of denying the absoluteness of death, but could be a good way to make a young child fearful of sleeping. The reality of dying is far more stark than the language of disguise we use for it:

Mary, on the verge of tears, talked about how she would wake alone at night and stare at the ceiling in dread. Others in the group described similar experiences, and their belief that they would sink into their fear and never emerge from it again or ever be able to think of anything except cancer.

Who could blame anyone for wanting to avoid confronting the end of life? It is the ultimate limitation, the supreme fact which confronts us with our limited ability to order things in the world the way we would like them to be. Death is not pleasant, and confronting it elicits strong feelings -- terror, sadness, rage -- with which few people are comfortable. We often rationalize our reticence to deal with these feelings with the fantasy (and it is a fantasy) that expressing such feelings is 'bad for you.' Indeed, I sometimes think that doctors are trained to treat crying as if it were bleeding, to be stopped at all costs as soon as possible. I tell the medical students at Stanford: "If you see a patient crying, don't just do something. Stand there."

A rather young father with alcohol-related liver disease was dying at Boston City Hospital. We had resuscitated him once when his heart stopped due to an imbalance of electrolytes in his blood. Less than 24 hours later, his heart stopped again, and this time we failed in our desperate efforts to bring him back to life. His desolate 14 year-old daughter stood at the foot of his bed and wailed: "This can't be. This can't be. He's not dead."

I, just a medical student at the time, thought her reaction seemed quite appropriate. The head nurse did not: "She's upsetting the other patients." "Let's take her into another room," I suggested helpfully. "No, she needs a shot of Valium," said the nurse. "If this upsets you, you take the Valium," said I, less helpfully. I thought this poor girl was doing the grieving she needed to do, and that if she did not do it now, she would be doing it later in a psychiatrist's office. The nurse convinced the intern to give her a shot of Valium.

Jim, a forty-two-year-old-man, was dying of leukemia. He had become suddenly ill several months earlier, and the disease was advancing so rapidly that a variety of intensive treatments had failed to arrest its progression. "He lay in his hospital bed, conscious of his situation, while his wife sat beside him. A nurse who had been off duty for several days entered the room, took his hand, and said, quietly: "Jim, I love you. We all love you." There were tears in everyone's eyes, and he died quite peacefully later that day.

We have been pretty good in medicine at shutting off strong emotional reactions. We have a range of medications to calm anxiety and depression. Please do not conclude from this that I am opposed to the use of these medications. I am not. But their purpose is to treat pathological anxiety and depression, not normal fear and sadness.

Sandy described how she had suppressed her reaction to her father's death: "I just put aside the strong feelings, thinking I would deal with them later. The trouble is, I never did. I paid a price for that, and my brother and sister, who were much younger than me, never got a genuine picture of our father as a result.

"But I think I see why I do it with my cancer," she added. "It is my way of trying to control the effect the illness has on me. If I don't get upset, it is as though the disease can't get to me. But it does, anyway."

We often think we do patients a favor by "protecting" them from death. But, ultimately we cannot, and what we really do instead is hobble them, making it harder for them to understand and cope:

Leslie was hospitalized because of a pathological fracture in her leg due to a metastasis of her breast cancer. She watched a man dying in the room across the hall. She noted with interest how his family was reacting, and found herself quite curious about the details of dying, how the body was prepared, who took charge of it, where it went, etc. When she awoke the next morning, the room was empty. She asked two nurses, who were foreign but had spoken good English the day before, what had happened. Suddenly, they spoke no English. They were apparently more anxious about the death, or its effect upon her, than she was.

Death anxiety is a fundamental part of human existence. Existential philosophers, such as Kierkegaard, Heidegger, and Sartre, have emphasized that we come to know ourselves as best we can only when we confront the possibility of nonbeing. The term 'existential' itself comes from the belief that there is no 'essence' of human experience which is truer than 'existence.' We best understand what it means to live when we contemplate what it means to die, not to exist.

The 19th-century Danish philosopher Soren Kierkegaard begins one of his most famous works, Fear and Trembling, with several retellings of the Abraham and Isaac story from the Old Testament. He describes it in terms of Abraham's disappointment that God for many years seemed disinclined to fulfill his promise that Abraham would become father of a great race of people. Finally Abraham had a son, and now God asks him to make a sacrifice of that son. Abraham is asked to sacrifice not only his son, but his cherished and promised role. When the crucial moment comes and he finds that he is willing to make the sacrifice, he sees the lamb and sacrifices it instead. Kierkegaard calls Abraham a knight of faith, in part because he obeys the word of God, but in part because he confronts the meaning of his own existence in the possibility of his and his son's nonexistence. He had elevated his role as the father of a great race above the fundamentals of his being, and was losing himself. He was seeing his son Isaac as nothing more than a means to an end. It was only when he was willing to give him up (i.e. give up his ambition in Isaac) that he could truly have him. When he was willing to die without having fulfilled his cherished role, he was finally able to live.

Kierkegaard contrasts Abraham with Agamemnon, who in the Greek myth did sacrifice his daughter Iphigenia in order to appease the gods and obtain favorable winds for a military victory against the Trojans. Calling him the "knight of infinite resignation," Kierkegaard notes that he subordinated the truth of being to his role as a leader. He lost himself in fulfilling a role, a partial aspect of himself. We play at roles and suddenly find that we have become them. I am reminded of watching the wonderful French mime Marcel Marceau. In one performance, he plays with putting on the classic comic and tragic masks of theater, switching them with stunning ease. After a few minutes of this, however, the comic mask gets "stuck." He cannot pull it off. The smile, now glued to his face, becomes painful, although it has not changed. His whole body struggles to pull it off, but cannot. Thus he depicts us becoming trapped in our roles. What seems like a game ceases being one.

Stanford Professor Irvin Yalom, a noted authority on Existentialism and psychotherapy, has observed that there are two fundamental ways in which we avoid confronting our own mortality. The first is what he calls our "immortality projects." We throw ourselves into various worthy activities with the idea that as long as we are doing them, and doing them well, we are somehow insulated from death. We could not be allowed to die while doing such important things. Some throw themselves into work, others into raising children, all with the unwritten and unexamined idea that such continued noble activities are a defense against death.

Doctors are famous for being vulnerable to the myth of the immortality project. They studiously worry about everyone else's health and ignore their own. How could I possibly be taken away when I am doing so much good in the world, when I am saving so many lives? That is why doctors make lousy patients, and even worse pilots.

By the same token, this is a role that doctors love to play and patients love to have them play, that of the rescuer. If I simply put my faith in you, you will magically save me from the inevitable. As doctors, we do not like to admit our limitations, and as patients we do not like to see them. I am not referring here to lack of skill or knowledge. I am referring to the ultimate limitation that sooner or later everybody dies, and yet we want to play the role of rescuer. The knight on the white horse who makes everything better, who has the solution that eluded everyone else. Every once in a while, that does indeed happen, but often it does not.

Indeed, the other main defense is "the rescuer," the idea that some powerful person provides insulation against the danger of dying. Patients often view their doctors as these rescuers, fearing to provoke or contradict them in the belief that their willingness to rescue will be withdrawn. We often have a sense of safety when we are with someone who cares about us - it is as though nothing could happen to us when we are with them. We seek out leaders, even some who lead us into danger (remember Jim Jones?), in the belief that they provide some special protection from the inevitable. If death is close he or she will keep it at bay. This is indeed a realistic assessment of what parents do for children who are extremely vulnerable and who are protected by their parents. But as adults we continue to long for the safe haven our parents provided.

In The Sickness Unto Death, Kierkegaard describes the price paid for avoiding a confrontation with death: despair. A person in despair lives life as though it differed little from death, with no vibrancy, no important choices, no risks. He avoids the importance of the 'moment.' To make a choice that counts means recognizing that you have only so many choices in life. The vitality that comes from recognizing the fragility of your own being, the preciousness of time, is an antidote to despair. We either live as though we could not die and never really live, or we live fully in the face of nonbeing.

Professor Yalom and I believed that if these existential ideas were correct, they should work in action. People who were quite literally facing their own deaths could actually live more fully, inject vitality into their lives by reordering their priorities. But first, the considerable and deep anxiety that comes from staring into the bottomless pit of nonbeing had to be tolerated.

One's personal recognition of death hits an entirely different level when you notice a lump or your doctor orders some tests and asks you to come back to his or her office for the results. From the certainty that one could live endlessly and happily, suddenly it seems that your life is over, that you have been, with a few words, removed from the world of the living. Suddenly it becomes difficult to pay attention to anything else. "The prospect of the gallows concentrates a man's mind wonderfully", said Boswell. We go from knowing too little, to knowing too much.

Three Ways We Know Death

How do we comprehend death, this incomprehensible fact of life? There are three ways in which we confront death. The first and least difficult is the impersonal, in which we understand it as an idea. We know that death happens, that people disappear, we read about death daily in the newspapers and watch it endlessly on television. The way death is portrayed in the media at once makes it seem unreal and indeed, unimportant. By and large, the people who die on television are bad guys. We have not gotten to know or care about them; their suffering, if portrayed at all, is brief and presumably well deserved. At the same time we know that death happens, it is an impersonal event and arouses little, if any, emotion. Indeed these approaches tend to desensitize us to violence and death, making it seem commonplace and unimportant. It is estimated that the average child in the United States spends more time watching television than in school. By the time children have reached adulthood, each has witnessed tens of thousands of deaths on television. Does this teach them an existential lesson? On the contrary, it numbs them to death, or in tragic ways pushes them to act out fantasies of invulnerability, for example by obtaining weapons. Teenagers - children - obtain guns with the fantasy that the ability to kill others with ease will make them invulnerable to death. In fact, owning a weapon makes it more likely that you will die as a result of violence, and you are likely to be killed by that weapon. Murder is the leading cause of death of young black males in the U.S. Thus in these and numerous other dangerous ways, like smoking, we pretend to evade our vulnerability to death rather than face and accept it.

Teenagers seem to have lost what little comprehension of death they had in childhood, which is what makes them so dangerous to themselves and others. They live by an illusion of invulnerability, firmly convinced that they are immortal, that nothing can harm them, making them terrible drivers and excellent soldiers. The process of maturing into adulthood involves facing the reality of dying, and hence the need of defenses to help us manage that terror.

The second way of coming to know death is the interpersonal. Someone that we know and care about dies and the meaning is brought home in a much more powerful way. Few people have grown up without the experience of losing someone they cared about; a grandparent, an aunt or uncle, a friend.

Our lives are profoundly changed by the loss of a loved one - it feels as though a piece of ourselves had died. At first it is hard to believe they are gone. You expect them to walk in the room. When the phone rings, you are sure who it is. Many even imagine they hear the voice of the deceased. You start to discover, at times like these, that what you want often has nothing to do with what happens. You feel someone you love pulled away from you, and your knowledge of what happened is deepened by strong feelings about it: loss, abandonment, anger, fear. Your own life is changed by the death of a loved one. If it is a parent who has died, you have also lost a protector, someone who, in a sense, 'stood between' you and death, and you feel that much more vulnerable. If you lose a child, your ability as a protector, a guardian against death, is challenged. We often reassure ourselves about our strength by exerting it to protect others, and a failure makes us feel more vulnerable as well.

The third means of confronting death is the personal, the recognition that my life will be over, that I am not invulnerable and immortal. This is, of course, the hardest and most profound way to understand dying. And given how difficult it is, we find many ways to avoid it.

One way we become aware of the personal meaning of death is through envy of the living. Sarah talked in the group about her envy of her daughters: "I am afraid of dying but have been unable to discuss my fears with my daughters. I envy them. One went away for a weekend at Lake Tahoe, and I was jealous of her. I know I shouldn't feel that way, but I wish I could go and enjoy it too."

These words led to an admission by Amanda of a kind of perverse pleasure in realizing that even people who were very much set apart from her came to the same end: "I was reading Citizen Hearst and it gave me comfort to realize that with all the important people Hearst knew, he is now dead. No matter what someone had done in his life, this is the common denominator. For example, I looked at all the people in a football stadium recently, and realized that fifty years from now they will all be dead." Thus Amanda had discovered that the very thing which separates her from others, her death, ultimately unites humanity with her. Everyone's existence is fragile. She took comfort from combining the personal with the impersonal and interpersonal understandings of death.

Dealing with Dying

I sat talking with my friend Bryan a few days before he died. We were discussing what would become of his boys aged 11 and 9. Quite suddenly he turned and yelled at me, "I'm so pissed off at you Spiegel, you are going to get to see it and I won't. I hate you for that." It was hard to hear, but he was right, and I told him that I did not blame him, that I would feel the same way he did. Just as I was feeling cheated of his friendship, thinking about the football games I would go to without him. He was coming face to face with what it meant that I was far more likely to see his sons graduate from high school than he was.

What could possibly help somebody facing the end their own life? Oddly enough, staring death right in the eye, rather than running from it can help. Death can become not the problem, but rather a series of problems and there are things you can do about at least some of them. This is a process we have called detoxifying dying.

Marianne came to take her Muslim faith more seriously and made a journey to Mecca with her teacher. One day he said to her, almost casually, "It seems like a good day to buy our shrouds." She went with him, stunned at first. It is a Muslim custom to prepare for your death by purchasing and preparing the cloth that will be wrapped about your body. She said: "There was this little girl inside me, crying, 'I dont want to do this. Why should I have to buy and wash the shroud I will be buried in? I donít want to.'" But she did it, feeling her teachers guiding hand and closeness, and she felt a sense of accomplishment. She was developing a new side of herself, a sensitivity to her own feelings and a directness in expressing them that made her a most valuable member of the group. She made it safe for others to reveal their feelings by being so open about hers.

I have asked hundreds of people what they most fear about death. Strangely enough, it is not being dead, it is rather the process of dying. That scares people more. Fears of losing control of your body, suffering increasing pain, losing the ability to do things you love to do, being able to make decisions about your medical care, being separated from loved ones. Those are the ways that fears of dying become real. Death is something which pushes the edge of our comprehension and we have personal, philosophical, or religious ways of understanding what it means, but the process of dying is something that takes far less imagination. Despite this, each of those problems is addressable. One can do something to control pain, and make decisions about future medical treatment, to draw closer to loved ones, and thus the process of dying seems less overwhelming.

Years before I went to medical school, I had the opportunity to visit an experimental cancer treatment program at Brookhaven National Laboratory on Long Island. They were studying the use of the large nuclear reactor there for radiating the blood of cancer patients. As we entered the ward, a gaunt woman sat up in bed, greeted us, and clearly wanted to talk. With barely a question to elicit it, she told us her story. She had been diagnosed with breast cancer, her breast had been removed, and she had been told that she was fine. Her doctor had later discovered a recurrence of the cancer in her spine after she had complained of back pain. He told her it was not cancer, but muscle spasms. He told her husband that she was dying of cancer. She noticed that her husband had become rather estranged from her, but she decided that it was because she was losing weight (this was due to the cancer). She had concluded that she was less physically attractive to him, and that was why he was withdrawing from her.

What a cruel thing to do to her. In the guise of shielding her from death anxiety, her doctor had isolated her from the person who meant most to her in life, and separated him from her as well. How sad that she had to think he had withdrawn from her because of loss of physical attraction, rather than because of his sadness at her illness, and his (wrongly perceived) need to keep this to himself. This managed to turn his love for her into something destructive, separating instead of uniting them.

She spontaneously added: "I felt so much better coming here and knowing what was happening to me." The requirement of the program was that before entering patients be made aware of their diagnosis and prognosis. She had been told: "You have an illness that will shorten your life, but no matter what happens, there is something we can do to help you."

Notice also how she responded to the truth: it was less painful to her than the imagined loss of affection from her husband. Also, the message she was given was the right one, since it had two parts:

  1. you have a serious illness which is likely to shorten your life; but
  2. no matter what happens, your doctors will be there to help you.
Certainly, anyone would want their doctor to say they have a cure, but most do not expect that. They, however, have a right to hear that their doctors will be there for them. This kind of support is threatened when doctors think their mission is to cure rather than to comfort. More on that in Chapter 10.

Most people fear the process of dying more than death itself. Cancer patients usually worry about their suffering: increasing amounts of pain, losing the ability to do things they once did, losing control over their treatment. They also conceive of dying as separation from loved ones. In the words of the old black spiritual "You've got to walk that lonesome valley by yourself".

As a means of examining fears about dying, we went around the room one day, asking each member of a group for women with mixed primary and metastatic breast cancer, about their worst fears. They proved to be rather diverse. Several spoke of increasing pain, having seen mothers or other family members die in great discomfort. Others spoke about the manner of dying, one saying that a lifelong friend of hers had died in an experimental treatment unit for cancer consumed with anger, bitterness and pain. "I do not want to go that way," she said. Others feared depending on people. One, who lives alone, found it frightening to think of depending on others for help even in getting to her doctors for treatment. Another talked about a brilliant man she knew who had made his cancer into an intellectual puzzle, challenging his doctors at every turn. She hoped to be like him. One made a useful distinction between the fear and the problem: "When I think about the cancer I find it helpful to distinguish between the fear I feel and the problem I am afraid of. While it may feel overwhelming at the time, I feel better identifying that as an emotion rather than a fact. Several women began to cry when talking about their fear of being separated from their families.

Many are so used to doing for others that the thought of asking others to do for them is not only depressing, it is frightening. Women who have nurtured their children, husband, and even their parents all their lives, suddenly face the very real possibility of needing to be nurtured and cared for themselves. At first this seems too hard, that asking is more than they can bear. Indeed, they do not even allow themselves to think of what others might do for them. Thus, the process of dying brings with it fears of helplessness, of entering into a position in which you depend on others and therefore become vulnerable to their willingness to help, and their judgements of you.

One recounted how her family told her that she is making herself sicker if she even for a moment faces her fear of dying and not being with them: "I guess I'm just not coping as well as the rest of you. I'm just not as strong and independent - my family is everything to me." The other group members wasted no time reassuring her that she was coping fine, and that they felt closer to her when she shared her fear. They pointed out that her family was protecting itself from their feelings, not helping her by insisting that she shut off her tears.

One situation, many problems. And each, difficult as it was, could be dealt with at least partially in the group. The fears of isolation, pain, helplessness, could be addressed. At the least, they did not seem so overwhelming, and the feeling could be distinguished from the content of the problem.

Maria was the image of what every cancer patient fears. Always a tall and slender women, she had become gaunt. Week by week she became thinner as the cancer spread through her body. Finally she developed metastases in her brain making it increasingly difficult for her to control her muscles. Weakness developed on the right side of her body, and she became confined to a wheelchair. She kept coming to the group.

Maria talked a good deal, but mostly about her sense of having failed her mother, whose expectations of her had always been excessive. When she had been elected senior class president, her mother insisted that she be on the student council and phi beta kappa as well - nothing was good enough. We wondered in the group whether she was not setting excessively high standards for herself in regard to dying, and expecting disapproval from the group.

She had quite a different memory of her father. He had been taken to the hospital on a stretcher after having suffered a serious heart attack when Maria was 8 years old. She recalled that he smiled and waved to her as he was being taken away: "It is unlikely that he really felt like smiling at the time," she said. "But it meant a lot to me that he did that for me."

There had been arguments in the group about Maria, criticism of her increasingly untenable denial: "I'm going to beat this cancer - I won't let it get me." However, the discomfort of some other members with her presence came to a head during the weeks after Nancy, who had attended only a few meetings, died of a similar type of brain tumor. There was relatively little discussion of Nancy, but a flood of criticism of Maria (who was not at this meeting) for being "defensive" and "closed". I wondered aloud whether it was not Maria's physical frailty rather than her psychological limitations that troubled people. In retrospect, we had not spent sufficient time and energy grieving Nancy's loss, and were displacing our anxiety onto Maria.

The next week, it did indeed seem that both Maria and the cancer had gone too far. She was barely able to walk into the group room and it became apparent that she was unable to hold her head erect. I became anxious, as did the patients, just looking at her. What effect would this have on them, seeing their worst fears so graphically before them?

But I had a more immediate problem; how to help her with her head. Years of psychiatric training, teaching me to talk to patients about things rather then do things to them, had to be abandoned because I couldn't stand to sit by and watch her head wobble uncontrollably. So I sat next to her and held her head erect throughout the meeting. She talked abut her fear, mixed with an iron determination to keep coming to the group. She said: "I'm not having any more fear and feel very comfortable. I am surrounded by friends. I know that I may just have days ahead of me, but I don't want to spoil them."

Telling us that she was tired, she left the meeting a few minutes early, which gave the other patients an opportunity to unburden themselves about their reaction to her. At first disagreements emerged in the group. This bickering was followed by some anger directed at Maria for coming in that condition: "It upsets me to see her that way," one woman said. Said another member, "She should have known better than to come." Then another said: "There must be more than one right way to die. Perhaps some people will die screaming like a wet hen rather than in peace."

Judy suddenly changed the course of the discussion by saying, "It must have taken a lot of courage for her to come. I hope that when I am that sick, I will be as able as she is to make decisions about what I do. I think we are being so critical of Maria because she frightens us. We see her dying and we are really frightened that that is what will become of us."

Suddenly the group's image of Maria, and what she meant to them, had been transformed. They shifted their focus from the disease's ravages on her body to her continued mastery over it. They saw her now not simply a woman who was dying of metastatic breast cancer, but a women who was struggling to live her life as fully as she could, as long as she could.

And instead of being an image of despair, it became one of hope. Not the irrational hope that the disease would not kill them, but rather hope that they could live their lives much as they would have chosen to right until the very end. This came not from denying that she was dying, but rather from admiring how she coped with the threat of her own death.

The group then decided to hold the next week's meeting in her home, knowing that it would be easier for them to go to her than for her to again come to the medical center. We had a touching and sad meeting around the hospital bed in her home, and a few days later she died, but not before dictating a note to the group saying that she had learned from the meeting and appreciated everyone coming to her home to see her.

The group found a way to imbue what they most feared with a different meaning, with one that strengthened rather than weakened them, although it was sobering at the same time. We went through periods when it was quite difficult to discuss the deaths which had occurred or were impending. One member bolted out of the room, and we had to bring her back in and urge her to tell us what was upsetting her. It was knowing that Maria was dying - she found it almost too terrible to talk about, although she finally did. It became a matter of facing but not yielding to limitations.

Maria's presence led the group to address head-on a number of important issues related to the fear of dying:

  1. Who decides what medical treatment I receive? Many fear that as their physical and mental stamina decline, they will lose the ability to decide about chemotherapy, radiation, and other treatments. We encourage them to discuss clearly with their physicians what treatments they want, and when.

    Planning with their families and attorneys includes filling out a "living will". This is a document in which you can state your desires regarding the kind of medical care you will receive if and when you become more ill. You can make it clear, for example, that you do not want so-called "heroic measures" employed when you are near death. Doing this can set your mind at ease regarding the procedures that will be used, and can also relieve your family of painful choices at a time of critical illness ("since I love her, shouldn't I tell the doctors to do anything they can to save her?"). In discussing Maria's dying and death later, group members commented on how alert and comfortable she had been until the very end. Thus they managed to focus not just on the fact of her death, but on the manner of it. They were actually encouraged by her determination and control in the face of painfully obvious physical decline. They managed to extract, even from a very difficult situation, positive aspects of coping.

  2. Will I be left helpless to deal with increasing pain? Not all cancer patients suffer severe pain. Indeed, about a third of patients with advanced disease do not suffer significant pain. Nonetheless, all are understandably concerned about the possibility. Later in this book, we describe some simple self-hypnosis techniques that have helped many cancer patients control pain. In addition, doctors have become increasingly expert at using medications and physical devices such as nerve stimulators and infusion pumps to control pain. Talk with your doctor about his or her plans for helping you with pain.
  3. Will friends and family withdraw from me? Loneliness feels like a preview of dying. Death is, after all, the most profound separation from loved ones and friends. That is bad enough, we don't need it any sooner than necessary. And yet, many people are so frightened of death that they withdraw from dying people. When Debbie died rather suddenly, members of her support group reflected on what her life and death had meant to them. Judy said: "I'm still angry with her. She might still be with us if she weren't smoking."

    If you insert the dreaded words "cancer" and "death" into the conversation, you are telling your friend or family member that you are strong enough to talk about it. Such direct conversations can remain as treasured moments for both of you. The result is that you feel close, and far less alone, as the members of our group did. In the face of their worst fears, what they gave one another was comfort and closeness. It did not solve every problem, but it powerfully countered the sense of isolation that makes death seem to come sooner than it does.

    When death anxiety is strong, people need to feel their relatedness to others. Sheila was angry with herself after Debbie died. "If I had been a better group member, maybe I could have helped her in some way. I didn't let her know how much I cared about her." If there is one regret that our groups have experienced over the years after a member has died, it is the sins of omission - not letting people know before they died how much they meant to us.

Unfinished business

There is such an absoluteness to death. Harsh words can not be taken back. Promises unfulfilled can never be completed. One can not even say goodbye. Facing the absoluteness of death can be a tremendous stimulus to life. If it is important, do it now. Say what you mean to say. Settle old grievances. Accomplish what needs doing, sooner rather than later.

When the going gets heavy in groups, I not infrequently find myself at a loss. Death is so overwhelming that it is rather humbling. There seems to be so little one can do about it. Strangely enough, we always resort to the same comfort. Our sense of caring about one another. We huddle together in some sense. Our bond of caring some kind of talisman against the power of death. Ultimately, each of us has to face our death alone. It is a tremendous comfort to tangibly do it with someone else. A good hug, or some shared tears may not save a life, but it will make you feel more alive.

It is one thing to express support and caring for the living, but maintaining that sense of caring and connection in the face of death is another matter. Madeline illustrated a series of cards on which she inscribed the following poem after the death of Eva, a vital and delightful woman who died shortly after a long-planned final trip to Greece:

Dear Eva,
Whenever the wind is from the sea
salty and strong
you are here.

Remembering your zest for hilltops
and the sturdy surf of your laughter
gentles my grief at your going
and tempers the thought of my own.

The last two lines of this poem capture an important point. Grieving losses in the group strengthened, not weakened, members. They were able to cherish the strengths of the departed member, identifying with her joys and abilities, not just her defeat in the face of the inevitable. Madeline had deeply admired Eva's strength, her eyes-open acceptance of the inevitability of her death. However, there had been times when Eva felt trapped by her strength, admitting to the group that she had been reluctant to come to meetings when she felt overwhelmed and depressed. Madeline pointed out to Eva that it would be better if she could show them both sides of herself since they would know, even in their frailty, that they could also have some of Eva's strength. We tend to think of strength and weakness in simple arithmetic terms:

Strength - Weakness = Coping.

In fact, we are all of us strong and weak, and admitting to ourselves the periods of desolation does not weaken us. Admitting it to others helps them by allowing them to see that you do not have to be perfect to be strong. If a person you admire admits weakness, you can tolerate your own weakness much better.

This process of grieving was ultimately reassuring rather than threatening, because it was a reminder to Madeline that she, too, would be missed and grieved when she died. The most frightening thing is to think that you might slip away unnoticed. The process of grieving helps you understand those aspects of life that remain with others after you are gone.

Shortly after Eva's death, the group members, including Maria, got into a discussion of finally coming to terms with "giving up the 'escape clause.'" Most had nurtured a secret fantasy that they would be the one to beat the odds. However, as the disease progressed, producing new symptoms, they became increasingly aware of its relentlessness, and came face to face with a recognition that what they wished had nothing to do with what happened.

The irony of giving up this escape clause is that it is in an odd way invigorating. It makes you feel how precious and fragile your life is because you recognize that it can indeed slip away. This is what is so debilitating about approaches that hide from people the medical facts of their illness, or make them pretend that they can wish the cancer away. They are handed an escape clause, denial or wishful thinking, and it puts them to sleep instead of waking them up. Psychiatrist Gregory Bateson used to talk about what he called a dormifying hypothesis, one that "puts to sleep the critical faculty." His example is the term gravity. We still have very little idea about what that powerful force is, but having given it a name, we think we understand more than we do, and therefore we stop worrying about what it is. When we come face to face with the idea that we may indeed lose, in fact, that all of us will one day run out of escape clauses, we take what we have more seriously. This is what living beyond limits is all about.

This was, on the one hand, deeply frightening, and on the other, necessary for coming to terms with the illness. It was part of a process of selecting goals that were attainable. In this way, the cancer patients in our groups began to see dying not as one huge overwhelming problem, but rather as a series of problems, each of which could be dealt with in some way. These problems included fears about loss of control over bodily functions, relying heavily on family and friends to accomplish tasks once done with ease, the ability to make choices about medical treatment, the control of pain, and separation from loved ones and friends. The thought of death itself is overwhelming and at times terrifying (there is a reason why we use the phrase 'scared to death'), but it is usually not first on the minds of people with life-threatening illnesses. They worry more about more proximate dangers. Bad as these are, there is something almost reassuring about being able to articulate them. As each takes shape, it suggests possible courses of action. One can learn about the expected course of the disease, and how you can prepare and compensate for loss of physical abilities. This includes developing an ability to ask for help, something which comes easily to very few except the very young. Planning with your doctor can enhance your ability to participate in your present and future medical care. Even the inevitable separation from loved ones can be mitigated by intensifying your closeness to them now, while you can. Each of these problems (and many others not enumerated) is less overwhelming when faced directly.

Thus, we worked on telling doctors in advance what kind of care we wanted as we got sicker, controlling pain, setting a list of priorities of things that needed doing, and being sure that they got done, mobilizing help and support that was hard to ask for, writing a will and arranging for burial. All of these hard, but necessary aspects of living or dying.

They felt less passive as they thought of things they could do about each of these issues. They hardly denied or ignored death. Rather, they looked it right in the eye and decided what to do about it. As Diane put it: "What I found is that being in the group is a bit like that fear you have standing at the top of a tall building or at the edge of the Grand Canyon. At first you are afraid to even look down (I don't like heights), but gradually you learn to do it and you can see that falling down would be a disaster. Nonetheless you feel better about yourself because you're able to look. that is how I feel about death in the group - I am able to look at it now. I can't say I feel serene, but I can look at it."

Cancer patients in our Supportive/Expressive Group therapy Program spend a good deal of time confronting their own fears of dying and death. Indeed, most fear dying more than death. Fears of dying can be allayed by grieving the loss of other members, openly discussing personal fears, and breaking down dying into a process with numerous components: pain, loss of control, helplessness, isolation from family and friends. As this is done, means of addressing many of these problems can be discovered.

We have, at times, had more than an indirect confrontation with fears of death. Toward the end of one meeting, Lucy said that she was not feeling well. As we asked her to tell us what was wrong, she turned her head to the side and lost consciousness. We took her out of her chair and laid her on the floor. As I took her pulse and blood pressure, which were normal, she became conscious again. We brought her to the emergency room, and it became clear that she had fainted - because of recent chemotherapy, she had not felt like eating and drinking, and had taken in very little during the preceding day. She recovered well, but the group had quite a scare. Leslie said: "We just saw what we most fear." Each group member interpreted what had happened in terms of her own recent stress. Ramona's sister had just suffered a stroke, so she thought that Lucy was having a stroke. Several group members thought Lucy was dying, others thought she had fainted. The group settled upon discussing the unpredictability of the event - they wanted at least to have some warning that something was going to happen to them. This was a way of dealing with their death anxiety - focusing on one aspect of the event, and on how predictability could help them to be emotionally prepared.

That such an event should occur was hardly surprising. After all, when you get patients with a similar serious illness together, some will get sicker and even die. What effect will this have on others with the same disease? When we began this project in the 1970's, many clinicians were understandably concerned that we would make patients worse rather than better, that we would demoralize them through exposure to similar patients who did poorly. We were quite concerned about that and went so far as to compare those group sessions in which there was bad news about members to those in which the group was doing well.

We asked several Stanford medical students to observe a number of group sessions and classify the discussions in two ways. First, we asked them to rate the mood of the group each minute of the 90 minute meetings. They did so from a list of emotions, including anger, happiness, despair, frustration, etc. These moods were then lumped together on a quite simple basis: positive, neutral and negative. We also had them rate the content of the discussion at each minute. The topics included death and dying, medical treatments, what was occurring in the group, what was happening to group members, the family situation, and small talk. We had several students provide ratings of the same meetings, so we could assure reasonable agreement among the raters about these dimensions. We then examined the medical news about group members, and divided it into three types: good news (a clear bone scan, no sign of recurrence), neutral news (the disease has not progressed), and bad news (the scan shows new metastases, an increase in pain, a member died). We look to see whether the medical condition of the group members affected the emotional tone or content of group discussions. In collaboration with Michael Glafkides, then a Stanford undergraduate student, now a plastic surgeon specializing in breast reconstruction, we analyzed these data and found something interesting. The emotional tone was relatively balanced: about equally positive, neutral, and negative, and it was not influenced by the medical news provided by group members. However, the content of group discussions was powerfully influenced by medical condition. When there was bad news, the groups spent a good deal more time discussing death and dying, what was happening to group members, and their medical treatment.

Leslie, whose illness had been progressing, talked tearfully about how her sister had become pregnant again. While she was happy for her (her sister had recently had a stillborn child), she admitted that the news reminded her of her lost ability to have children. Sheila had been quiet, but on questioning stated that she was still "clean," meaning no recurrence of the cancer recently. Then she burst into tears and said: "At the time when all of my friends were growing babies, I was growing tumors. I waited until my 30's to have a child and wound up with a tumor. I love my adopted children, but I wanted children of my own."

Thus, bad news elicited serious discussion. When there was good news, there was a lot more small talk. Thus the medical condition of members, by this measure, did not demoralize the support groups, but it did focus the content of their discussions, as we had hoped it would. It also gave a sense of peace to other group members facing death. The following was written by Reggie Kriss, a co-leader of one of our early groups, at the memorial service for Betty:

I would like to tell you about Betty, as I came to know her. A person seeking help to quiet her fear of the unknown, from the ravages of cancer. She came to a group of women who were all dealing with the thought of dying, of their life coming too soon to a conclusion. It is daring and usually taboo to discuss with others what it is like to die. Sad thoughts are often left in limbo, unexpressed, hidden in the night in silent tears. In this group it was different. The experts were the women with cancer. They were encouraged to probe the depths of their feelings and unexpressed thoughts, to mourn themselves, and share in the good and bad events and happenings of each other's lives. The bonding came from mutual concern and caring for each other and Betty was in the midst of it. As she learned to help herself confront even the most frightening and fearful thoughts, she became aware, as did the other group members, that letting go of oneself has riches in it that were often learned too late. Letting the trivia in one's life go and the "shoulds," I should do this or I should do that, or he should do this or that. The process in the group became for Betty and the others a new way of confronting life. A vitality and energy came from the group that made no issue too painful to disclose, and the deeper the group went into their feelings the stronger they became in helping themselves and their families deal with the inevitable fact that we must all die, and for many of us, sooner than we wish.

I do not need to tell you of the warmth, deep devotion and interest, concern and compassion that Betty has for all of us in the group. For that was her nature and we all basked in the beauty of it. But I would like to tell you how we all learned from each other. One of the issues that came up in the group was having the courage to die. Betty was particularly concerned that she would not be satisfied with the way she would conduct herself, that she would just weep and feel sorry for herself. I remember the afternoon Betty came to the group, some months ago, and slowly and quietly told us she had finally come to the knowledge that she was going to die and probably would not live out the year. We were all stunned to hear one of our members make this kind of statement. We were deeply saddened but admired her courage to tell us and share this most intimate feeling. Betty showed us that she trusted us, to support her in knowing this, and somehow from that day on she seemed to have an unlimited courage to offer her family and all of us.

Another group member, Eva, a fighter of no mere means, in the last week of her life became peaceful and unafraid and told us just before she died: "I'm not going to push the river. I'm not afraid to die, I feel at peace." Betty said that Eva gave her a gift and after that Betty had no tears. Betty, in turn gave us courage and her love were gifts to all of us who knew her. Her tender and loving family gave and received her beautiful spirit, just as she wanted it to be. Betty will be in our memory, always.

Betty gave a gift to the group by making it clear to us how much we had helped her. She often referred (as Reggie mentioned) to the comfort she drew from the "amazing grace" with which Eva had confronted her own death.

There is much in the popular psychology literature which suggests that true maturity about cancer means a conviction that it can never hurt you, or that dying is not to be feared. There is nothing unusual or incorrect about fearing death. The crucial issue is to face death in such a way that you can do something realistic about it: enriching life before death, taking control of your medical treatment, setting up a living will, reordering priorities in life. If there is one thing worse than death, it is living as if one is already dead, something the Danish philosopher Kierkegaard called the "Sickness unto death." This is one of the senses in which our cancer patients learn to "live beyond limits." The limitation of death can be experienced as a stimulus to life.

One of the things I learned in my training is that what should be the easiest thing in life, expressing love and caring, is indeed one of the hardest. It involves taking risks, admitting to tenderness, being vulnerable to hurt because the person you express care for may not care back. No one does this easily, and men do it even less easily. When I learned that my friend Bryan was dying rapidly, I returned from a sabbatical trip to spend some time with him. We both knew why I had returned and hugged each other so hard we nearly fell over. We said in words something that had been implicit in our friendship, which is that we each felt like the brother we wished we had had. Now that he is gone, I am very glad that we had that discussion, that I know that he felt the way that I did, and that he knew that I felt that way about him. We had to say it to one another because we knew that soon the opportunity to do so would be gone forever.

Indeed, there is a sense of power that comes from an unblinking confrontation with death. The words "sacred" and "sacrifice" have a common root. Many religious symbols involve the transcendence of death: the sacrament in Catholicism, for example. Battlefields are consecrated by the blood of the deceased. But there is a power in facing death in everyday life as well. Sandy called her daughter's Dean after she refused to allow her to take a summer school course in order to graduate college early. Sandy said: "I want my daughter to graduate early because I have cancer. The doctors gave me two years to live. I've lived a year and a half, and I want to be alive when she graduates. The Dean said what a wonderful person I was and that she would do anything to make it possible."

There is a kind of freedom that comes with a recognition that your time is limited. Long-term consequences seem less weighty (indeed less likely). I have always admired the freedom of older people to speak freely, in contrast to those of my generation in the middle years who are still building careers and maintaining relationships. Older folks often just plain say what they think. They seem to worry far less about the consequences of their words. This is often ascribed to 'aging,' but I suspect it has more to do with the proximity of death. Not only is time (and candor) precious, but whether or not someone else approves or disapproves seems a bit silly. Thus there is a kind of authenticity which comes from a confrontation with the fragility of life that can be positively refreshing.

Ramona had been more quiet than usual for several group sessions, and finally, after repeated questions from leaders and group members, she admitted that she was not feeling well, and was afraid that she was dying. She was about to undergo radiation for the first time, and had a new and general sense of being unwell. "I just feel bad - like I'm dying," she said. And then, with a little of the old twinkle in her eye, she added: "Even when I have a good day, I figure this is the time when you rally two days before you die."

We ended that meeting in laughter.

©Copyright1993 By David Spiegel, Reprinted by Permission


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