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This was one of the most important and thoughtful talks given at Cancer Dialogue ’80. Stephanie Matthews-Simonton is a psychotherapist and the director of counseling at the Cancer Counseling and Research Center in Fort Worth, Texas. What she has to say — about how we make ourselves sick, and how we can become well — applies to us all.
With her husband, Dr. O. Carl Simonton, a radiation oncologist and the medical director of the center, she has focused for the past seven years on the emotional needs of cancer patients. She developed the center’s intensive psychotherapy program, which has become a model for similar centers across the country. At the clinic, people are taught that the mind and body are inseparable.
The Simontons are the authors of Stress, Psychological Factors, and Cancer, and, more recently, Getting Well Again, which describes how someone’s reaction to stress and other emotional factors can lead to disease, and gives detailed instructions to overcome those patterns.
The address of the Cancer Counseling and Research Center is 1300 Summit St., Suite 710, Fort Worth, Texas 76102.
What follows are excerpts from her talk. For our interview with her, click here.
In 1972, two emerging theories shaped the work I’m now doing. The first, coming from early biofeedback studies, indicated a person could be taught to mentally influence aspects of his or her physiology that we used to think were outside of our conscious control. Such things as heart rate, blood pressure and blood flow could be influenced by the person himself. At the same time, an old theory explaining the development of cancer re-emerged. Called the surveillance theory, it proposes that we probably all develop malignant cells a few hundred if not a few thousand times in our lives, that through exposure to carcinogens, our own genetic predisposition, and a number of other factors, the body’s individual cells may undergo changes. In addition, the body has a very effective defense mechanism, the immune system, that recognizes and destroys minimal malignant cell development, and rids the body of those cells without our ever having any clinical evidence of malignancy, either walling off the disease process, or destroying it entirely.
That theory caused a considerable shift. Frequently, up until then, an oncologist’s opinion was that in order for a person to be cured of a malignancy, every malignant cell had to be destroyed, or else one could break loose, lodge somewhere else, and a new malignancy would grow. Suddenly, more recognition was given to the fact that within the person’s body was a defense mechanism which apparently had broken down prior to the diagnosis and allowed the cancer to develop, and that while it was important to destroy as much of the gross cancer as possible, in order to effect a cure, it was also important to pay heed to the body’s innate ability to regain control of the disease process. Immunotherapy and other ways to artificially restimulate a person’s immune system have grown in number in the last few years.
Out of those two theories — the idea that a person’s immune system was a vital factor both in the development of the disease and in the outcome of the disease, and the idea that a person is able to influence physiological conditions — came the original theory and a question: If a person can influence his heart rate, blood pressure and blood flow, can he influence his immune system, thus helping to effect a response to treatment and recovery?
In 1972, we didn’t have the technology, and today we still don’t have the technology that would allow us to apply a pure biofeedback model to cancer. We don’t yet know quite which components of the immune system are most involved in the cancer battle, but more important, we don’t have the technology to measure the activity of the immune system on a conclusive basis. I don’t think we’re very far away from when we can give a person instantaneous feedback as to what thoughts, feelings and behaviors correlate with increased or decreased activity of the immune system. We can then much more readily teach people how to take conscious responsibility for their own healing processes.
When we first began, we found that those patients most able to influence internal conditions used some form of visualization — seeing a picture in their minds of what it was they wanted that body condition to do. That didn’t make as much sense to us in the late 60’s and early 70’s as it does now. Certainly, if we look back on the old hypnosis literature, we see much evidence that visualization plays a role in changing internal processes. As more of the split brain work has come out, we realize that the hemisphere of the brain that influences autonomic processes probably thinks more in pictures than in the logical linear expressions that we are accustomed to.
Out of that came the relaxation and visualization technique. We asked patients to take fifteen to twenty minutes, three times a day, to relax as much as possible, shut their eyes, close out the external world, create a quiet, passive scene inside to focus their attention, and then to visualize three things: their cancer, however it seemed to them symbolically; their medical treatment destroying their cancer; and finally, to see their body’s own immune system continuing to destroy the malignancy and restoring their body to health.
It was either our blessing or our curse to have a highly dramatic experience with the first patient. I suspect had it not been for that first patient, we would have become discouraged in the early years and would not have continued on with our work. He was a sixty-one-year-old gentleman with a far advanced cancer of the throat; he was literally choking and starving on his own tumor. He lost weight, was down to 98 pounds. Because of the location of his tumor, his age, and general condition, at first it was decided not to treat him with radiation because of the side effects. But because of his insistence and other factors it was decided to give him a low dose of the radiation to see if it would make him more comfortable. Certainly, he didn’t seem to be a patient with whom we had much to lose. We shared the ideas with him about people being able to influence their own physiology through visualization and he grasped them readily. During the six weeks that he was treated, a number of remarkable things happened. His tumor responded readily to treatment, which is not unusual in the face of the radiation. What was more unusual was that he showed almost nothing in the way of the side-effects that we would expect, particularly considering the location of his tumor. He began gaining weight, feeling better. In fact, he asked that his treatments be set up for a single morning so that he could go fishing the rest of the day. Another factor that began to be significant and unusual with him, and somewhat difficult to explain, was that he had an amazing awareness of his internal physiology that was outside of his normal sensory apparatus. His tumor was not visible to the naked eye; it required a special mirror apparatus to see. And yet he seemed to know almost daily exactly what location and what aspect of the tumor was responding. He came in after a weekend and said he thought there was a sore on the tumor, and in fact there was an ulcerated area on one side of it. We asked him to put his white blood cells, which he saw as a pulsating snowstorm, on automatic pilot for the next couple of days, to go to work on the ulcerated area and get it clear. He could draw a picture of how his tumor was responding to treatment that could be put up next to a photograph of the tumor and would match it almost exactly.
Several weeks into treatment, Jim began to feel so well, so excited about his white blood cells and what a good job they were doing on his tumor, that he decided to turn his white blood cells loose on his rheumatoid arthritis. Well, I was very skeptical and cautious in the early days and cautioned him that we seemed to be doing such a good job with the malignancy, let’s leave well enough alone. But he was undaunted. And the imagery that he created was interesting. He gave his white blood cells a sandpaper edge and sent them down to the area in his knees where he had his symptoms, and asked them to sand off the spurs from his knees. Within a few days the arthritis symptoms cleared.
Well, by then we were scratching our heads and wondering what kind of a phenomenon we were dealing with. His tumor was responding, his rheumatoid arthritis was no longer preventing him from fishing, he was feeling better and gaining more weight. He decided to apply the process to the only remaining physiological problem that he had, which was that he had been sexually impotent for twenty years since his retirement. Again I cautioned him, suggested that surely we should leave well enough alone, but he sent the white blood cells down into the area of his penis. He said that he felt they never could find a physical problem, which was physiologically accurate, because his impotence was not due to physical factors, but most probably psychological factors. But even then, in a period of about ten days, he began to be able to have an erection and maintain it, and began to brag about his sexual activity over the next few years.
Well, I can’t tell you the excitement we had at the end of treating that patient, realizing that not only was his tumor gone with few side effects, but that he remained stable and had no recurrence of his disease.
I was convinced that with good medical treatment and a relaxation and visualization process, surely the cure for cancer was close at hand. And then we began to encounter what has been one of the most difficult long-term problems in treating cancer patients from a psychological perspective — the enormous resistance of the patients to using the process. All of this was long before we realized that psychological factors played a role in the disease. Patient after patient would refuse to use the process that would require little more of them than forty-five minutes a day, certainly didn’t have much in the way of side effects, and seemed to have some nice additional benefits like relaxation, reduced pain, a generalized sense of well-being.
We began to take a look at the idea that the depression and despair that we saw in our patients, and believed was the result of the disease, might in fact predate the disease. It was not a comfortable or easily grasped idea — that psychological factors actually played a role in the development of cancer.
From the earlier work of Dr. Lawrence LeShan and others emerged the Loss Theory, which, simply stated, says that those who are predisposed to cancer may, as a result of early childhood lack of closeness with parents, be susceptible to issues around the loss of a love object, whether of a child, a job, career, spouse, or some significant object in their life that carries a lot of emotional energy. And within six to eighteen months prior to the development of the symptoms, you will usually see an unusual clustering of stressful events occurring in the patient’s life, involving a loss of a love object.
It’s not reasonable to expect people on their deathbeds to exhibit coping strategies and styles of behavior that they’ve not had a chance to practice.
It’s not reasonable to expect people on their deathbeds to exhibit coping strategies and styles of behavior that they’ve not had a chance to practice.
A child enters high school, and suddenly the idea dawns on the mother that her purpose as mother is soon to be over, and the loss of that relationship as the sustaining reason for her existence begins to dawn on her. A man is diagnosed with a life-threatening illness, and suddenly his wife realizes that she may one day lose this relationship that has been so important to her. A man reaches a position in his work and suddenly realizes he’s reached the top of his ladder. There will be no more steps up, and the momentum of moving ahead, aggressing and achieving has been the major reason for his existence. Suddenly a profound depression and despair occurs, and then, six to eighteen months later, we will see a diagnosis of clinical malignancy.
How, then, would we deal with the psychological aspects of that patient’s disease? If stress and psychological factors play a role in the development of disease and if we intervene psychologically, can we change the course of the disease?
The relaxation-visualization process gained greater dimension over the next few years. In teaching several hundred patients how to use the process and listening to their reports of how they visualized their cancer, their treatment and their white blood cells, I observed that the symbols the patients chose were a valuable clue to the underlying belief system that existed, many times outside of their awareness, not only about their cancer, but also about the events in their lives, and their being able to be resolved that life would once again be worth living.
One of the first patients that I questioned on the symbols he’d chosen had been diagnosed with lung cancer, and continued to go downhill very rapidly, even in the face of treatment, which was unusual. He and his wife maintained that he used the process three times a day, that he didn’t go to sleep in the middle of it. So I questioned him about what it was he saw when he did his visualization. He described his tumor as a big, black rat — quite an unusual symbol for a patient to choose to represent his malignancy — and he saw his treatment, which at the time was chemotherapy in the form of pills, as little yellow tablets that broke down in his blood stream into smaller yellow tablets. When I questioned him about the interaction between the black rat and these yellow tablets, he said, “Once in a while the rat eats one.” I asked, “What happens when he does?” And he said, “He gets sick for a while but then he bounces back all the stronger and bites me all the harder, and I have more pain.” I said, “Tell me about your white blood cells.” He said, “They’re in an incubator.” And I said, “What do you mean?” He said, “They’re like little white eggs sitting under a warm light and one of these days they’re going to hatch.”
No amount of intervention intellectually was able to effect any long-term change in that man’s imagery. Prior to his death, and talking to his wife and his family after his death, we learned that every adult member of this patient’s family had died of cancer, for as long as he knew. Since their marriage when he was nineteen, every time he had a symptom of a cold or flu he said to his wife, “It’s cancer, I know it, and I’m going to die.”
Of all the measures that we take — we keep over 250 pieces of data on our patients, besides information about their disease process and medical treatment — the contents of the patient’s imagery have been the most predictive of where his disease would be two months down the road. If the patient’s symbolic visualization represents his belief system, then it’s a matter of helping the patient see what parts of his visualization are ineffective and helping him change it, and then perhaps changing the course of the disease. I encountered the enormous complexity of changing those symbols, not unlike trying to change one’s dreams.
A number of years ago, I treated a man with advanced cancer of the pancreas, a Ph.D. physicist. He saw his cancer as little furry animals that resided in a place he called the cancer plane. He saw his white blood cells as white knights on white horses. In his imagination he would blow a bugle and an enormous line of white knights would line up — he drew a picture of the line of white knights going on into infinity, there were millions of them — he blew the bugle a second time and down came white lances. Being the good researcher that he was, he gave each one of the knights a daily quota. They all charged out into the cancer plane, where they speared their quota of cancer animals, carried them over to a stream of liquid that represented his chemotherapy, scraped them off into the stream, where the animals blew up like popcorn, dissolved, and were carried away. This is the symbolic imagery of a Ph.D physicist who has worked with radiation and knows many details about the physiological nature of his disease process. His visualization is very effective, from any standpoint, in terms of the imagery. One day, however, several weeks into the treatment, he blew his bugle, and instead of the knights being on white horses, they appeared on small white dogs that couldn’t carry them anywhere. He posed the question, what is the meaning of this? And no attempt to change that symbol intellectually worked. He came to me quite frightened about the process. We spoke with the white knights on the white dogs and asked them what the meaning was. Out of that exploration came a therapeutic issue that we had been confronting for quite some time. This patient had a history of prolonged, deep depression that would occur as a result of a number of things going on in his life but of which he had almost no awareness. It would be weeks after the depression had begun that he would finally realize that he was depressed, usually by the feedback of his family and coworkers. He was very out of touch with what was going on psychologically. However, when the knights appeared on white dogs that day, he was several days into a depression instead of weeks. The knights were giving him a message that he was once again depressed. As we began to confront the issues around his depression, the knights appeared on white horses again. That became a signal for him in the months ahead. Whenever the knights would appear on dogs instead of horses, he was becoming depressed again, and he was able to catch the depression, realize it was happening, days or hours into it, instead of weeks or months. We were much more able to resolve the issues and alleviate his depression.
Several months later, he called up his white knights one day and gave the second bugle charge and when the lances came down they had crooks in them; they weren’t able to spear animals. He was concerned again. We did some work confronting a pattern of behavior that was one of the major therapeutic issues with him. His father had been an alcoholic who frequently spent the family’s money on drinking, and they labelled him within the family as very selfish. His mother, on the other hand, was a self-sacrificing, selfless, martyrish woman. He had chosen his mother as his model. The way that translated in his life was that he would refuse to ever let anyone know what he wanted or needed, which would be selfish and like his father. The event that triggered this particular episode of depression was that he’d been given a very difficult research task and had been assigned a group of misfit researchers, the problem characters in the laboratory. Out of that group he had forged a very effective research team, and they had solved the problem that they had been given. In recognition of his accomplishment, his superiors assigned him a new task and took him away from this group of misfits that they assumed were very difficult to work with. Little did they know this man had always regretted leaving his earlier work as a college professor and going into the business world because he loved working with students. This group of misfits had been like students, so, unknowingly, his superiors had really penalized him for his accomplishment. But he refused to tell them. He was enraged at them for taking the team away, but refused in any way to let them know. Out of talking with his white knights with their crooked lances, he made the decision that the knights were telling him they weren’t going to spear cancer animals unless he started telling the people around him what his needs and wants were. He confronted the issue at work, told his superiors, was once again given the group of misfits to manage, and his knight’s lances straightened out.
Some time later, another change occurred in his imagery, when one day he sent his white knights out and they came back short of their quota. That happened several days in a row and he became alarmed. Shortly after that he was found to be free of disease. His knights’ reports were quite accurate — there were not enough cancer animals left for them to fill their quota, and he had to reduce the quota as time went on.
I hope the description of this kind of imagery gives you an idea of both the symbolic importance of the patient’s imagery and the clues that that imagery holds to the overall psychological picture of the patient. I mentioned two specific, mechanistic tools that we use in initially intervening with a patient, and one is the visualization process and paying attention to the symbolic messages carried in the process. The second is the use of a physical exercise program. Physical exercise is one of the best antidepressives that we have in treating cancer, with the fewest side effects, and produces some other nice psychological changes as well. Psychological research shows that it increases self-esteem, increases one’s sense of overall body wellness, and provides a number of strengths and felt resources within the patient.
Our first stage of treatment is a very careful history-taking process, asking the patient to review that time frame, six to eighteen months, even two or three years prior to their diagnosis, to look at what kinds of unusual events were going on and what may have triggered the depression. It is difficult to uncover that part of their lives that triggered their despair and hopelessness. For instance, we may work with a man with a number of marital and family conflicts which we could treat effectively, only to find out later that the trigger of the hopelessness was the fact that the man was demoted at work, a major issue that was left untreated therapeutically. So our first step is to zero in on the factors prior to the disease that triggered the despair that translated into depression of the body’s immune system, allowing a malignancy to develop.
One of the reasons why a careful history-taking is necessary is because of the inaccurate assumptions that much of our culture has about stress and its psychological and physiological effects. I remember one of the first patients that I ever treated. I came out of the initial session believing that here, finally, was a patient who seemed to have everything going for him. He had great business difficulties in previous years, and four years before his disease had broken up a bad partnership, started a new one, and for the first time had a good stable, working relationship with his partners. He was paying more in income taxes than he had ever expected to earn. A year before his disease, he and his wife had completed the adoption of their second child, and they now had a girl and a boy. They had been married for fourteen years, the first ten years fraught with great conflict. They had sought counseling, and for the last four years everything had been smooth and peaceful. He was a man for whom everything seemed to be going right. But he gave me one clue during that first interview when he said, “That last year before I was diagnosed I had a lot more time than I ever had, I had time to spend with my family. I can remember coming home at night in my car, thinking about spending the evening with my family, and there was a song that kept going on in my head that whole year, that Peggy Lee song, ‘Is That All There Is?’ ”
This man was 39 years old. As I later learned, he had been abused as a child, and had grown up believing that the only way he deserved to survive was if he were overcoming insurmountable odds. Suddenly he had reached the top of every mountain he had ever built for himself. We forget that the accomplishment of goals is a significant loss. Suddenly all his reason for pursuing, striving, fighting, was ended. In the course of getting well and staying well he had to learn to live in peace, not to need enormous obstacles in order to feel that he deserved to live.
We frequently see a lack of emotional outlets in cancer patients, particularly a difficulty expressing hostility. Anger in the face of severe stress is a very effective coping strategy, and quite healthy from a physiological standpoint. A person who has impaired emotional outlets and does not allow himself to express anger, has reduced the number of coping alternatives available to him.
In the process of exploring the triggering factors to his despair we also talk about a person’s will to live. If you talk with people who have survived a life-threatening illness when, according to medical prognosis, they shouldn’t have, you will often hear a story that goes something like: “I couldn’t die because. . . . I had this child to raise. . . . I had that to do. . . .” and you will hear an overwhelming purpose, something that carried them through the dark days of their disease process. The will to live is not a magical thing that some people have and some people don’t have, but is directly related to the degree and amount of investment that the patient has in his life. What’s unfortunate about a diagnosis of cancer is that frequently people stop investing from the day of diagnosis. Patients will stop buying clothes for themselves because, after all, they may not live to wear them. They will stop making plans for vacations because, after all, the family shouldn’t spend time and money on them, they won’t be here that long. You begin to see a self-fulfilling prophecy developing, where the patient starts withdrawing more and more from life.
In my experience, patients who recover from a life-threatening disease don’t go back to the same kind of life. They have a quality that Karl Menninger described as being weller than well.
In my experience, patients who recover from a life-threatening disease don’t go back to the same kind of life. They have a quality that Karl Menninger described as being weller than well.
That might be an effective preparation for death. If the quality of life is such that life is not worth living, it may not be so difficult to lose. However, the Catch-22 is that if the will to live does correlate with one’s investment in life, and that investment correlates with a better prognosis or outcome of disease, then by withdrawing from life one might be participating in bringing about something that is not a physiological inevitability. So the stance that we ask patients to take is to maximize the quality of their lives as much as possible, which is a risky and courageous stance to take when a person has been told he only has a year or two left to live. To be willing to invest in and maintain a high quality of life, not knowing how much life you have left, takes a particular act of faith. One of the early questions we had from colleagues was that perhaps in doing that we might make the patient’s death process more difficult, but in fact that has not been the case. We have put a high emphasis on the role of play and enjoyment in the patient’s life. I think we can all learn from Norman Cousins: his form of play therapy was watching his favorite movies, and if he got a belly-laugh, he would have a pain-free period. It looks like the body uses pain to signal both the healthy, happy aspects of life and the unhealthy, unhappy aspects. We focus on asking the patient to increase his enjoyment of life.
Focusing on enjoying life increases the sense of pleasure, the emotional energy and resources, that then allow us to do the more difficult and painful long-term work of uncovering the trigger to the patient’s despair and offering hope to that aspect of his psyche. Another part of the treatment process and frequently the most difficult internal work, has been to deal with the secondary gains associated with the disease, the ways in which a person may experience emotional benefits as a result of their illness. There is no question that cancer impairs and impacts the patient’s life in many unfortunate ways. However, it frequently meets some important emotional needs that may never have been met as well before. We’re dealing with a population who put other people’s needs first — those who succumb to cancer are frequently the too-good-to-be-true people in our midst whose care and concern for us has led to their own demise. The psyche which has been repressed and denied gets a hold of a very powerful tool. The diagnosis of cancer invites and invokes much love and attention from one’s environment. That’s very important for people to get well.
Internally it frequently creates a change, as well. The person gives himself permissions that he may never have given himself before. It’s permissible now to be cranky, angry, irritable, to say no to people’s expectations, to ask for their own needs to be met, and to receive love and affection — all of which fill important emotional needs. The dilemma comes only when the person starts to return to health. If then both the external and the internal secondary benefits stop — and unfortunately they frequently do — the person thinks, “Now that I’m well I have to go back to meeting other people’s needs. It’s time for me to reassume my responsibilities.” He starts going back to the same barren emotional life that may have produced the disease in the first place. The danger is that a part of his psyche becomes an internal saboteur and says, “No, I don’t want to go back to that life, therefore I won’t get well.” The symptoms of that we’ll frequently see in the patient who is suddenly beset with depression and anxiety when told that the disease is substantially better or in remission. Our therapeutic task, then, is to help the patient see the benefits he received both externally and internally when he was ill, and help him change in such a way that he can maintain most of these benefits after he gets well again. That’s no easy therapeutic task. For a person to treat himself as well when he’s well as he does when he’s ill usually requires quite a restructuring of his internal rule system about the type of person he feels he needs to be in order to be all right and receive what he wants from the outside world. And yet it is a paradox that the part of the psyche which will sabotage a person’s efforts to get well is in fact trying to get him to live a greater dimension in life than he ever has before. In my experience, patients who recover from life-threatening disease don’t go back to the same kind of life. They have a quality that Karl Menninger described as being weller than well. I’ve had many patients say to me, “If I had it all to do over again, even as difficult as the experience of cancer was, I would have it again to have the benefits and the kind of life I have now which I never allowed myself prior to my disease.”
Another important aspect of the treatment process is the role of the family. A frequent report I’ve had from spouses of cancer patients when they’re away from the patient is an admission that every so often they wish he or she would just die, get it over with. They experience intense guilt as a result of this. When a person receives a diagnosis of a malignancy, the other members of the family start denying their own needs in service of the patient. That’s not a bad coping strategy for a short-term illness, but with cancer, we’re frequently talking about years of denial of the spouse and other family members. Our culture supports that. If the wife goes out to lunch with friends, people will say, “Isn’t your husband in the hospital, why aren’t you there?” and they begin to feel more and more guilty about maintaining a good quality of life when someone in their midst is ill. So the whole family’s quality of life is lowered with the disease process and it’s a very natural thing for them to ultimately wish for it to be over in the quickest way possible so that they can get back to living. The task is to encourage and support the family members’ beginning to take care of themselves in addition to the cancer patient in their midst so that they have energy and support available for the patient in the long haul. Another therapeutic task arises from the fact that a person who has cancer is frequently the one in the family who is the glue that makes everything stick. He or she is the self-sacrificing caretaker of the family — Mama who always meets everyone’s needs and doesn’t ask much for herself, doesn’t express much anger. We take that person in treatment, and teach him or her to be assertive, to recognize his needs, to ask for them to be met, to express anger, and guess what the family experiences? Loss of the caretaker, and upset at this anger and all these feelings coming from the patient that they’ve never experienced before. It’s vital so that the family doesn’t sabotage our therapeutic efforts, that they be drawn into the treatment process initially so that they understand the changes to expect in the patient, because those changes will be felt everywhere in the system surrounding the patient. All kinds of tasks and rules will be redistributed when the person with the malignancy begins to claim those aspects of the psyche they have previously denied. It’s important that the family support the belief system of the patient that he can in fact affect the disease process psychologically.
Of more difficulty is dealing with the ways in which the disease may be a response to an unhealthy system, an outgrowth of a larger issue going on in the family. One of the most common symbols that I have seen emerging out of patients’ dreams and imagery is the symbol of a child or infant who is crippled, impaired or deprived in some way. The dream may occur shortly after diagnosis, or even before, and will arise again and again throughout the treatment process. I use that symbol to describe one of the major tasks that the patient goes through: relating to part of his inner world that he has denied since childhood. The symbol of the child usually represents the part or parts of the psyche that he has felt were innately wrong or bad. The symbol emerges as a request for care and as the person accepts and incorporates that aspect of himself — the childlike, vulnerable, dependent, needy part that he has denied much of his life — then the disease process responds. It’s almost as if the child is saying, “Allow me to grow or the disease process grows.”
Another part of the treatment process is the necessity of talking about death. I found through a number of unfortunate experiences early in the work that by not talking about death I could create in the patient a sense of obligation to stay alive at all costs in order to prove the theory. Some patients would suddenly break contact with me. Several weeks or months later the family would call and tell me the patient died with some message like, “Please tell Stephanie not to give up. Please tell her it doesn’t mean that the process doesn’t work.” As a result of those experiences, I have in the last few years developed a therapeutic contract with the patient. It’s this: there’s no question when the patient comes to me that our goal is to work together to turn the disease process around. My goal with every patient is for him initially to get well. That’s his hope at some level, too. However, it is also important for me to communicate to the patient that he may change his mind about the direction of our work at any point. I want him to know he has that choice. To go toward death is acceptable to me, and I will support him as much to have a good death as I did to bring about a good quality of life. In my experience, the patient brings me his ambivalence at earlier stages for us to work through, and for those who do say, “Yes, I’ve had enough,” or “I’ve done enough,” or “It’s time now to go toward death,” the death process has a different quality.
We have now begun to quantify the quality of patients’ deaths. We realize that’s an outcome that we hadn’t accepted in this treatment process. It’s become more and more unusual for patients who die in this process to be hospitalized for more than a week, for pain to be a significant problem in the later stages of their disease. I’ve heard Elisabeth Kübler-Ross say that people die in the style in which they lived. If you want to get a good idea of how a person will handle his death, look at his last major crisis. If he uses denial and repression, the two most common defense mechanisms, that’s how he’ll handle his death. If he is able to be psychologically aware and use more direct communication, you will see a different quality of death process. It’s not reasonable to expect people on their deathbeds to exhibit coping strategies and styles of behavior that they’ve not had a chance to practice.
Six years ago we began looking at the outcome of the patient’s disease, and we have since had to broaden our quantification procedures to include four factors that we consider to be a good outcome of our intervention. First is the patient’s longevity. Our theoretical stance was and still is that while a person is being treated psychologically, we should be able to affect the disease process. We began to compile data on those patients who had a medically incurable disease, even though we treat patients with better prognoses than that. If you effect a good response in a patient with fifty percent curability, who’s to say whether the medical treatment or psychological intervention brought it about? So, we’ve only compiled statistics on those patients who should die of their diseases. Our median medical prognosis at time of entrance into the program is twelve months or less, and then we measure longevity.
Of the over two hundred and fifty patients who’ve entered with medically incurable disease, many survive two times as long, on the average, as their traditional medical prognosis. However, within that number there is enormous variation. There are patients who do die within their prognosis, there are patients who double their prognosis, and others who get well from medically incurable diseases and stay well for years. In some ways our own reporting is an unfair reading of our own statistics, because we lump together two hundred and fifty patients with a wide variety of motivations. Some of those who come to us, for a while, then go home and never use any of the processes again. Others engage in a one to two year transformative psychotherapy process. Clinically the observation has been made that the more hours of therapy the patient takes, the more commitment to the process, the more involvement, the more he integrates this into his approach to living, the greater longevity will be. In addition to that, we measure the effect our process has on the patient’s quality of life, quality of death and help to the surviving spouse.
As we look at cancer as a psychosomatic disease, meaning that it is a result of a combination of physical and psychological factors both in origin and in outcome, we have attacked some of the beliefs underlying this culture and it is important that we recognize that, both to temper our evangelical zeal in wanting to bring about change more rapidly than our culture may be ready for, and also to help us understand the difficulty of changing belief systems. Our culture has been committed to Cartesian dualism and, unfortunately, when we approach with a psychological program patients who have a life-threatening illness like cancer, we risk the possibility that they believe that we’re telling them that their disease is all in their head — because that is the image that psychosomatic disease has gotten in this culture — or that we’re telling them it’s their fault. There is a great lack of awareness of what we mean by the complexity of unconscious psychological processes and their involvement in the disease process. We face a great resistance in this culture to psychotherapy, which is in essence the treatment program that I described to you. Those patients who somaticize in response to stress, who develop physical illness, are frequently the patients who would never face the door of the psychotherapist’s office if their very life did not depend on it. There are still great numbers of patients who will not use a psychological approach because in many parts of the country admitting the need to see a professional for one’s emotions is tantamount to character suicide. I would hope one day that we each had a personal therapist just like we have a family doctor and one would not expect to live life without seeking help of an objective caregiver to evaluate and appreciate the stress, the change that we’re all experiencing.
This treatment system and the idea of psychological factors in the development of cancer confront our belief in our non-participation in death. When we say that psychological factors play a role in the outcome of cancer, are we not in fact saying that people play a role in choosing how, of what, and when they die? What does that do to the spiritual, religious and moral foundations that most of us have grown up with?
I think it’s important that we appreciate that what we’re doing with this approach is to bring to awareness an unconscious tool that has existed in our culture for centuries, that tool being the use of physical disease to meet important emotional needs. Disease has been called Western civilization’s only form of meditation. Illness is the only circumstance in which we’re allowed to become introspective, crawl into our beds with the covers over our heads, feel sorry for ourselves, be cranky, say no to this constant achievement pressure. If we only remove disease, whether by medical prevention or psychological intervention, I think we will only make more inhuman the condition that we live in. What is vital, I think, is that we find ways to replace disease as a psychological tool. When we look at disease from a systems perspective, not only do we have to consider the family system in which the patient resides, but the cultural system that supports and encourages denial of feelings, the discounting of one’s inner world, pressures us to bottle up feelings, smile when it hurts inside, put other people’s needs first, and achieve and accomplish at all costs and for God’s sake never fail. That culture creates a perfect condition for disease to be a necessary human psychological tool. If we’re to replace it and really look at the possibility of a society much more free of disease, then it is essential that we find a replacement psychological tool. Preventive medicine will really come about when we teach parents how to raise children differently and to relate to their inner world and aspects other than the physical and material in a very different way.
One last issue is the therapist’s dilemma. First, there are far more unknowns than knowns in this work. We’ve now trained several thousand therapists to do the kind of work that we do. One of the major factors that most correlates with whether a new treatment program will affect a patient’s longevity is the degree to which the health care deliverer has incorporated the principles in his own life on a daily basis. If there’s ever a time as caretakers when we can’t say, “Do what I don’t do,” and not expect it to affect the process, it’s in this treatment. The most reliable source of guidance as a therapist is my experience with my own personal health care and relating that to my patients. It forces us as therapists to become models of self-care, models of replacing disease in our own personal lives. Caregivers have notoriously been self-denying. Not only do we ask the patients in using this model to change the inner world, but we also ask them to stand up to their family system and often their cultural system that teaches them to live in such a way that they need illness. I think that it’s important that we take responsibility for providing a model for them of how to provide care for ourselves when we’re well, as well as when we’re ill. My experience as a therapist using this approach is that it is no easy task.