HOUSE CALLS AND HOSPITAL CALLS: THE CHALLENGE TO HEAR OUR PATIENTS
The material for this book comes from a decade of work with terminally ill adults and children whom we attended in hospitals, nursing homes, and, most important of all, in their own homes.
We have moved from institutional care of the dying to a new and healthier way of caring for them in their own environment; at home they are surrounded by their families and in control of their own needs and wishes, which is almost impossible to achieve in the best of hospitals.
Many of the readers will be familiar with my seminars on death and dying for health professionals in hospitals and the internationally held five-day workshops on life, death, and transition offered to professionals and lay people. These seminars and workshops have given physicians, clergy, counselors, nurses, and volunteers a tool to take back with them to facilitate their interactions with the critically and terminally ill. Our beginnings and lessons from the dying patients have been published in On Death and Dying and Questions and Answers on Death and Dying. For those who are not familiar with this material, the first chapters will repeat some of this material in order to present the remainder of the book in a more,comprehensible fashion.
It is important to understand that the material herein is not really new. Yet there are millions of people who still have the illusion that a patient is "better off" if surrounded with an air of "all is well"; that is, if we visit terminally ill patients only with a smile on our face and cheerful, superficial conversation or silence. We have no problems getting them the very best in physical care and attention, but most often neglect their more painful emotional and spiritual turmoil.
Our work has included a total care of every need the dying may have. We have allowed them to be in control of the time and place of this care, of the amount of pain medication they require to allow them to remain conscious and alert, yet pain-free. We have respected their wishes to leave a hospital when there was no more active treatment available. We have helped in making arrangements to transport them home. We have always prepared the families for this change in their routine living and naturally spent time with the children who were affected by the sight, the smell (at times), and the communications and experiences of living in the same household with a dying parent, sibling, or other relative. We found it to be a profound and positive experience for most people, young and old -- as long as our help and assistance was available and an occasional house call on my behalf alleviated the anxieties of the family.
Case Presentation of L.
L. was a thirteen-year-old girl whose big dream in life was to be a teacher. She was hospitalized during the summer and was found to have an abdominal tumor. After surgery the parents were reassured that everything malignant had been removed, and they were confident that their daughter's life was no longer in danger. Before school started L. developed new symptoms, and by September she began to deteriorate rapidly. It became clear that she was full of metastasis and that she would no longer be able to return to school. In spite of the pleas of her parents, her physician refused to put her on Brompton mixture for pain relief, and a search for a new physician who was willing to use this most effective oral pain management was in vain. She was no longer able to be transported to Chicago, where her previous treatment was given. It was at this point that I was consulted and started to see the young patient and her family in their home.
The mother, an open, deeply religious and courageous woman, spent much time with her daughter and discussed frankly all issues that her child brought up. L. was in a comfortable bed in the living room so that she was able to participate passively in the activities of her family. Her father, a quiet man, did not speak much about her illness or impending death but showed his love and affection in little extra attention and would often return from work with a bouquet of roses for his oldest daughter.
The siblings, ranging from six to ten, were brought together one day in the living room after school hours. I had a session with them in the absence of any adults. We used the spontaneous drawings of children, a technique taught by Susan Bach, and they happily cooperated and explained their pictures. Their drawings clearly indicated their knowledge of their sister's serious illness, and we discussed her impending death without euphemisms. It was the six-year-old who had the courage to bring up his problems, namely his inability to watch television, to bang doors, and to bring friends home after school. He felt intimidated by the adults, who started to tiptoe around the house, and wondered Openly how long this ordeal might last. Together the children discussed the things they would like to share with their sister -- all the things they would like to say to her prior to her death -- and, needless to say, we encouraged them to do so without delay.
After several difficult days -- each one expected to be the last -- L. simply lingered on. By now she had an enormously enlarged abdomen and her arms and legs were similar to the ones I had seen in the concentration camps. L. simply could not die. We brought her tapes of favorite music; her mother sat many hours at her bedside and was quite open to answer whatever questions her daughter had. It seemed impossible to figure out what held this little girl to life.
During one of my house calls -- and with the mother's permission and in her presence -- I asked her straightforwardly, "L., is there something that prevents you from letting go? You cannot die, and I cannot figure out what it is. Can you tell me?" With great relief L. confirmed this by saying, "Yes, I cannot die because I cannot go to heaven." I was shocked by this statement and asked her who in the world had told her this. She then related that she was told "many times by my priest and the visiting sisters" that "no one goes to heaven unless they loved God more than anyone else in the world." With her last physical strength, she leaned forward, put her fragile arms around my shoulders, and whispered apologetically, "You see, I love my mommy and daddy more than anyone else in the world."
My initial reaction was one of anger. Why do people who "represent God" use fear and guilt instead of representing Him as God of love and mercy? I also knew from past experiences that no one can help another person by demeaning another person's approach. This is the time when the use of parables or symbolic language is the only answer. The following dialogue took place:
"L., I will not get into a debate about who has the right answers about God. Let us talk about the things we always shared. Let us take your school as an example and answer me one single question. Sometimes your teacher gives especially tough assignments to some students in class. Does she give this to her worst students, to just anyone in her class, or to only very few, especially chosen ones?" L.'s face lit up and she said very proudly, "Oh, she gives this only to very few of us." My response to her: "Since God is also a teacher, do you think He has given you an easy assignment that He can give to just any child, or has He given you an especially difficult one?" A very moving, nonverbal communication took place at this time. She leaned up for a moment and took a long, hard look at her own emaciated body, her protruding abdomen, her skinny arms and legs, and with the most extraordinarily pleased look she stared at me and exclaimed, "I don't think He could give a tougher assignment to any child." It was no longer necessary for me to say, "And now what do you think He thinks of you?"
I made only one more house call. L. was at peace. She dozed off and on and listened to some of her favorite songs, including the one I brought for her from the Monks of the Weston Priory, "Wherever You Go," which has become one of the favorites of my patients. When she died, her family was prepared. The children came with me alone to the funeral home prior to the official visiting hours and they were most grateful that they were allowed to touch her body, ask questions, and say a last prayer for their beloved sister.
Death came early in their life, but it was a shared and moving experience to see a whole family growing closer together and sharing not only the pain and agony but also the joy, the music, the drawing, and the growth experience together. It happened at home, where everybody became a part of the experience and no one felt left out, as is the case when a child is removed from home and dies -- so often alone -- in a hospital, where children are not allowed to participate and are often left with guilt, sorrow, and many unanswered questions.
This case points out several issues that we have to be willing to face if we are to have the courage and conviction to be nonconformists and accept this fact: There are many people in the helping profession who are very reluctant to accept changes brought about by the new approach to dying patients.
There is no need to suffer incredible pain now that the Brompton mixture is available. There is no need to have a mother give around-the-clock injections for pain relief to her adolescent child, for whom this is painful and who is already reduced to "skin and bone."
Aside from the issue of pain relief, the next most important problem all of us have to face is the fact that each one of us is convinced of the benefit of our work. Otherwise we naturally could not spend 90 percent of our waking hours in this field. It is our belief, our faith and conviction, and, last but not least, the positive feedback of hundreds of families that affirm us. It would be easy to say, "This is the way to take care of dying patients."
In spite of the fact that we strongly believe in our approach, we have to keep in mind that we can never help another human being by discrediting another fellowman. As much as I am appalled by accounts and experiences of my patients and their families, it is a golden rule that we avoid, whenever possible, negative judgment of others even if we are in disagreement with their counsel.
The case of L. perhaps shows best how the use of the symbolic language, of speaking in parables, will help to answer the patient. It also demonstrates not getting involved in a form of power struggle and competition that can only bring about more hostility and negativity.
This is not to say that we should not take every opportunity to share with such an individual later and privately our positive experiences. Slowly but surely more people will see the benefit of this approach and gradually become familiar with it.
In the meantime we have to make every human effort to teach not only adults but children, at a young age, that we can express our feelings openly and unashamedly, that there are people around who will express their opinion and understand them without the need to judge and label and discredit them.
If fears, like the one mentioned by L., can be elicited early in life and dealt with before a terminal illness strikes, we have found a way to preventive psychiatry. A group of six children, ranging in age from six to thirteen, have been confronted with their biggest fears and problems in a psychodrama setup, led by a small group of extremely well-trained adults who have worked with me in our life, death, and transition workshops. It was one of the most moving experiences that anyone who has been in the field of psychiatry and psychology for decades can witness.
It is most moving to see how children in a safe and accepting, nonjudgmental environment can open up and verbally express their deepest concerns. It is touching to see a nine-year-old finally find the courage to ask his mother, "Then why in the world did you bother to adopt me when you are so full of hate?" As a result of this openness, the other participants felt free enough to express their fears that they might not be loved or that maybe "my parents are not my real parents."
Our Growth and Healing Centers across the country, which are in a status nascendi at the time of this writing, will enable us to get to children of all ages and help them with these fears early in life.
B. is another case that could have ended in great guilt and tragedy if a friend had not intervened and assisted a young family to take the patient home and resolve the unfinished business virtually on the last day of her life.
I am using this example to show that children and adults have to be assisted in expressing their negative feelings and fears, resulting in a catharsis and an openness hardly ever possible during the restricting visiting hours in a hospital, where there is a lack of privacy and the ominous absence of young children.
Case Presentation of B.
B. was a young mother of two children, aged one and three years old. She had remarried when her little girl was two years old and expected a baby when her health began to fail. Shortly after the delivery of a little baby boy, she was diagnosed as having cancer and she spent much of her remaining life in and out of hospitals. Her young husband was not prepared to face all these new responsibilities: the care of two small children, the hospital bills, an empty house, dealing with neighbors and friends that he suddenly depended on, and most of all -- he resented not having a wife and a "normal life." He had no one to confide in and held it all inside -- until one day a few days prior to his wife's death, he lost his apparent composure and blurted out his dismay and anger at the world, God, and especially his wife. B., too weak to respond and unable to do much about her family situation, began to panic. She felt stuck in a hospital where treatment had already been discontinued, where the bills mounted, where she was unable to see her children. She knew that her husband threatened to put her little ones up for adoption, and she was desperate to see to it that it was prevented. It was at this time that a girlfriend visited her, evaluating the situation appropriately and fortunately taking action immediately. After a consultation with B.'s physician, she was given permission to take her home. Friends contributed the necessary tools, from a hospital bed to a commode and a rubber ring. B.'s living room was converted into a sickroom. She was placed under the living-room window, where she was able to look out into the street and the garden. She was able to view the open kitchen and her children playing. Her husband was grateful to be spared returning to an empty house after work. A brief visit to their home revealed a very lonely man who never had any opportunity to share his own fears and feelings of loneliness and inadequacy. He was more than cooperative and quite willingly allowed me to sit with the little ones at the kitchen table, explaining death to them in a language that a three-year-old could understand. We drew cocoons and butterflies, and I told them that their mommy would soon die but that this was very much like a butterfly coming out of a cocoon.
We called her parents and sat in a circle around her bed. It was the little girl who broke the ice. Sitting on my lap in front of her mother, she asked three questions, each of them revealing how much this little girl really understood, each also allowing the adults to speak openly and frankly about their unfinished turmoil.
"Dr. Ross, do you think it is all right if I go to bed tonight and pray to God that He takes my mommy now?"
"Yes, you can ask Him anything you want."
"Do you think it is all right with Him if I then ask Him to send her back again to me?"
"Yes, you can ask that, as long as you understand that where Mommy goes the time is very different from here, and it may be quite a long time until you see her again."
"Well, as long as I know that I will see her again and that she is all right."
"That much I can promise you."
After a long look at her father and mother she said, "If this mommy dies now, do you think they will send me to a foster mother?" While the child looked questioningly at her father awaiting a response, the dying young mother looked at him, too. With a sigh of relief, he held his wife's hand and promised never to separate the children. The little girl was not so sure about this statement, when the mother looked lovingly at her husband and reassured him that it would be welcome and understandable that he should marry again and find some happiness (of which they had had very little in their short marriage)and also a mother for the two children. The little daughter then blurted out, "If all my new mommies should die, who would cook for me?" I reassured her that although this was most unlikely, I had a big kitchen at home and loved to cook. If this should ever happen, she would always be welcome at my house.
Shortly after this open and very loving interchange, the children fell asleep and we tucked them into bed. Their grandparents and the husband were alone with B. The candles were still burning and a soft John Denver song came from the tape recorder when B. made the transition we call death.
It took one house call, one friend who had the courage to initiate a move home for this young mother, and, as is often the case, the frankness of a little girl who asks questions and who gets answers instead of avoidance.
For the physician who can take an evening out of the usually busy schedule and to get to know the patients in their own home environment, it is an unforgettable experience and certainly enriches life in far more important ways than we can ever find in any other kind of service.
Children of dying young parents are a neglected group, since the critical illness of a spouse puts a tremendous burden on the other mate and leaves him or her little time to be of assistance to children. It is to the credit of a young and caring schoolteacher that this next referral was made, resulting in an unforgettable growth experience for all of us and for a class of primary-school children on the issue of death and dying -- and the most beautiful example of preventive psychiatry in my opinion.
Case Presentation of D.
D. was a third-grader who had done well in school until the beginning of December, when her teacher noticed that she and her sister, a kindergartener, showed signs that something was wrong at home. They both looked sad, did not play with others in the playground, and became clinging and unwilling to go home after school. A phone call by the attentive teacher revealed that their mother was dying, that they had not seen their father in a while, and that no one had told the two youngsters the seriousness of their mother's illness. Their father left for work early in the morning, then visited his dying wife, only to return home late at night when the children were already asleep. An aunt, herself unable to communicate about this family crisis, took care of their physical needs. The teacher expressed her concern to the aunt and was asked to prepare the youngsters for the imminent death of their mother. It was at this time that Miss K. contacted me by phone in order to receive some guidance and assistance in this difficult task. I invited the teacher to come to my home after school to watch me prepare the children and to give her an opportunity to learn this approach so that she would be able to do it by herself in the future.
It was the middle of December. My fireplace was going, Coke and doughnuts were on the table, and we soon sat together -- the four of us -- in a cozy, comfortable kitchen, drawing spontaneous pictures, munching doughnuts, and chatting away. It was the third-grader who drew an enormous stick figure in the middle of her paper, with out-of-proportion red legs, many times the size of the rest of the figure. Next to it was a geometrical figure that she angrily crossed out before completing it. The following dialogue took place after completion of the drawing.
"D., who is this person?"
"Anyone with big red, fat legs like this must have trouble walking."
"My mommy will never again walk with us in the park."
"Her legs are very sick."
At this point the teacher interfered with a correcting statement, saying, "No, Dr. R. Her mother is full of cancer. The legs are the only part of her body not affected."
"Right now, I don't want your reality," I answered. "I want to see what this child perceives." Directing my statement again to the child, I said, "Your mommy's legs look really huge."
She said for the second time, and quite convincingly, "Yes, my mommy will never again be able to walk with us in the park."
I then asked her about the strange figure next to her mommy, and she said with great sadness and some resentment in her voice, "This is a tipped-over table."
I repeated with a sense of incredulity, "A tipped-over table?"
"Yes, you see my mommy will also never again eat with us at the dinner table."
Hearing "never again" three times was enough for me to talk straightforwardly to this wise young child. I asked her if this meant that her mommy was so sick that she would die. D. said very matter-of-factly that this would happen very soon. And then -- as happens so often -- when I asked her what this meant to her, she said that her mommy would go to heaven but had no further answer. She had no real concept of heaven and insinuated -- as so many of our children do -- that this was an explanation grown-ups give, meaning that they should not ask any further questions.
I asked her if it would help her more if I would tell her a little about her mother's condition right now, since the children had been deprived of visiting her or of being informed about her in the last couple of weeks. I explained to her that their mother was already close to death, that she appeared as if asleep, unable to talk or move. I asked her to imagine a cocoon that really looked as if there was no life inside. We pictured a cocoon together, and I was just explaining that at the right time, every cocoon opens up and out of it comes...when she hollered, "A butterfly."
We talked for a while about how death was not the end, that the body that is buried or cremated was the shell, just as the cocoon was the "house for the butterfly," and that butterflies are much more beautiful and free. They fly away and we do not see them, but they then only begin to enjoy the flowers and the sunshine. Both children sat with open eyes, quite delighted about this possibility.
We told them that their mother's physician had promised to "smuggle them in" if they wanted to see their mother once more. They clearly understood that she could no longer talk to them or press their hands. We asked them to share whatever they wanted to tell her, even if she could not respond, that she could hear them and that it might also help their daddy, who was very lonely and sitting alone in the hospital.
All four of us went out into my garden and picked the very last mums. Then the teacher took it upon herself to bring the children to the hospital. She reported the next day, with tears of joy, that when she opened the door in the hospital, the children headed straight to their mother's bed, put the flowers on their mother's chest, and whispered, "Mommy, soon you are going to be as free as a butterfly." Father and children finally shared this moving moment, and the teacher left them alone, respecting the need for privacy among them.
The next morning D. asked to share her experience with her peers in "Show and Tell." She proudly went to the blackboard, drew the cocoon and the butterfly, and told her classmates, "Soon my mommy is going to die, and it is not really so sad when you think of a cocoon that looks like it's dead, but it only waits for the right moment to open up and out of it comes a butterfly." Her classmates not only listened attentively but began to share their own experiences with death in the family and death of pets. Before the teacher was aware of it, she had witnessed what was probably one of the first classes on death and dying, given by a third-grader to a most receptive and appreciative audience of grade-school children.
The most moving gratification came to my house a few weeks later in the form of a large manila envelope. It contained a letter from D.
"Dear Dr. Ross, I wanted to give you a consultation fee. I was thinking what you would like the most. I am sending you as a Christmas gift the letters and drawings of my classmates when they wrote to me after my mommy died. I hope you love it. Love, D."
Can anyone ever get a more moving "consultation fee" for a single hour spent with two delightful children, who were fortunate enough to have a caring teacher?
Both teacher and children have kept in touch with me. I receive an occasional letter or phone call from them. They have lost their mother at a young age, but they will not be traumatized by this experience. They have been able to share it, to understand it, and they in turn have opened up the formerly taboo topic to other youngsters.
To me, this is a form of preventive psychiatry. It is giving children an opportunity to deal with a problem openly and immediately, preferably before death occurs. It takes very little time. In each of the two last case presentations only one visit was necessary, one in the home of the patient, the other in my own home.
These interactions with patients of different ages and problems will perhaps give you a picture of our involvement and our joy in working in this field. It is essential that everyone caring for the dying and their families understands at all times their own concerns and anxieties in order to avoid a projection of their own fears. It is equally important that we learn and teach the symbolic language many of our patients use when they are unable to cope with their turmoil and not yet ready to speak openly about death and dying. They will use the same "hidden" language when they are unsure of the response of their environment or when they elicit more fear and anxiety on the part of the helping staff or family member than they experience themselves.
They do need to express themselves, but they may not even be consciously aware of their deep anxiety to confront the truth. It is at moments like these that an experienced schoolteacher, a minister, or a counselor can use the tool of drawings, an expression of the symbolic nonverbal language.
Spontaneous drawings reveal the same information a dream will reveal. It can be obtained in a few moments in almost any environment -- hospital, school, or home. It costs simply a piece of white paper and colored pencils. It sheds light within minutes on the preconscious knowledge of children and adults -- a tool simple and inexpensive and easily accessible, as long as we have enough conscientious therapists who have been trained in the interpretation of this material.
A special chapter explaining the origin of this technique and its possible use for the dying and the living follows later in this book. It has been compiled by one of my students, whom we sent to England to study under the remarkable Susan Bach, a Jungian analyst, who specializes in the study of spontaneous drawing of terminally ill children. She has contributed more to the understanding of these youngsters than have many than-atologists who make headlines in an era when this work has become almost fashionable. She has worked quietly for decades in this field and has been most generous in teaching and training our own student, in order for him to return to the United States to teach others the art and science of understanding the drawings, figures, and colors that these young patients use.
I think the most significant contribution these patients have made is in teaching us that patients do want to and can talk about their own finiteness, that they do know they are dying -- and that includes hundreds of patients who have never been informed about the seriousness of their illness. Patients not only know that they are dying but can also convey to us when they are dying, if we are able to listen to them and if we learn to understand the language of dying patients. A small number of patients are able to talk in plain English about their own dying. Patients who can say, "My time comes very close now and it is all right," or pray to the Lord that "He take me soon" -- those patients convey to us that they have at least partially come to grips with their own fear of death. Those are the patients that all of us will understand and they are also the patients who need our help the least. Patients who are "too young to die" will use what we call symbolic language. In order to understand the language of the dying patients, it is helpful to understand what the fear of death is. When I ask my audiences what they are afraid of when they think of their own dying, most people say that they are afraid of the unknown, they are afraid of separation, pain, suffering, unfinished business, leaving loved ones behind. This is only a very small part of the fear of death and not the significant part. Dr. George Wahl compares the fear of death with an iceberg. There is a small part above the water; the most significant part is hidden, invisible under the water. There are many things that we associate with the fear of death but they are repressed, unconscious; that is the part we have to understand. In terms of my own unconscious, it is very hard to conceive of my own death. I believe that it shall happen to thee and to thee, but not to me, like the psalmist who said ten thousand shall die on thy left and ten thousand on thy right, but it shall not happen to thee. If I am forced to conceive of my own death, I can only imagine myself being killed. I cannot conceive of my own death, except as somebody or something coming and destroying me. This is important to understand when you listen to patients with cancer. Even if the cancer has been diagnosed early, even if they have a chance of cure, they will always associate their malignancy with a catastrophic, destructive force bearing upon them. This is associated with a sense of impotence and hopelessness. If you comprehend this kind of definition for the time being, then you will understand the language that children especially use when they convey their awareness of their impending death. The symbolic language consists of two languages. Young children from the ages of about four to ten or twelve will use a symbolic nonverbal language. They will use drawings, pictures, teddy bears, dolls, or dollhouses -- symbolic gestures to talk to you about their dying. Older children, adolescents, and adults employ more often a symbolic verbal language.
An example of the nonverbal symbolic language is that of the thirteen-year-old boy who was here at the children's hospital for over a year, waiting for a cadaver kidney. He was an angry, defiant, depressed little boy who was noticed to pretend-shoot little girls down on the wards, greatly upsetting the nurses who took care of him. One day I was asked to stop little Bobby's behavior becuase he had really become a problem in relation to the other sick children whom he threatened with his symbolic shooting. I went to observe him for a while, unseen by him, and I noticed he only shot little girls. So I walked to his room and said to him, "Bobby, could you pick on a little boy once in a while?" I tried to imply that I was not there to judge him for his "shooting and killing" other children, but that I was interested in why he chose certain "victims." He turned around and said, "Did you notice I not only pick little girls but they all have good kidneys?" I used denial at this moment, because I could not believe that this little boy knew more of the medical conditions of these hospitalized children than I did. I did not even know which of the children had kidney involvements and which did not. I went back to the charts of his "victims" only to discover that indeed he chose only little patients who had good, healthy kidneys. By his symbolic shooting of the little girls, he tried to convey that he was getting impatient and begging those children to die in a hurry so he would have the chance to live. I hope you understand that it is terribly important not to judge such patients! It is mandatory not to tell them that they are bad boys and that they should behave better. It is important that we understand the nonverbal communications of these desperate children and try to translate for them to help them express this verbally, so that we can share with them their impatience and anger -- in Bobby's case in the face of his long hospitalization with so little hope for a kidney to come in time.
The symbolic verbal language is used by older children, adolescents, and young adults, but also by grown-up people who are simply afraid to die. But those are also the patients who are least understood, because in our nursing schools, medical schools, seminaries, and social-work schools, we do not teach the symbolic language sufficiently. An example of a symbolic verbal language is that of little Susan, who was in our hospital at age eight, dying of lupus. She was in an oxygen tent alone in a room, a quiet and good girl who never shared with other people her awareness of her impending death. Everybody liked her because she did not make the grown-ups uncomfortable, but she too knew about impending death. I hope that you remember the definition of the fear of death, that is, the fear of a catastrophic, destructive force bearing upon me and I can't do a thing about it. One night, in the middle of the night, Susan called her favorite nurse in and simply asked, "What's going to happen when I'm inside the oxygen tent and fire breaks out?" The nurse looked at her in surprise and said, "Don't worry, nobody smokes in here." The nurse then walked out of the room, but outside she listened for a moment for what we call the "gut reactions." She became aware that she must have missed something very important, but she did not know what it was.
This young nurse had the courage to listen to her intuition and called the nursing supervisor in the middle of the night. That takes courage, because most of us would have probably dismissed it and would have said, "Oh, it was probably not so important," because we do not like to inconvenience people in the middle of the night. She was fortunate enough to have an understanding, nonjudgmental nursing supervisor, who also knew the language of dying children very well. The older nurse told the younger nurse that this little girl was now ready to talk with her about dying. She advised her to go back to her room, simply sit down and listen to her. The young nurse did not feel comfortable doing that and again had the courage to admit it.
The older nurse came to the hospital, visited the little girl, and simply asked her, "What did you say about the oxygen tent and the fire?" The little girl repeated her question, and the nurse did something very beautiful: She opened the zipper of the oxygen tent, put the upper part of her body on the child's pillow very close to her, and said, "Do you think this would help?" The child started to cry. She thought for a while and then said in plain English, "I know I'm going to die very soon and just have to talk to somebody about it." They talked together for about forty-five minutes, shared all the things that had to be said, and both the patient and nurse felt very good about it. At the end, when everything was said that had to be said, the nurse did something that we do with almost all our new patients. She said again, "Is there anything else I can do for you?" The child gave a big sigh and she said, "Yes, if I could only talk once to my mother like this."
The nurse registered this request, said good night to the little girl, and the next morning took the mother into her office to share with her the dialogue of the night before. Everything went well until the last moment, when the nurse told the mother, "Then, at the very end, your girl said if she could only talk once like this with you." The mother suddenly got up, pushed the nurse away, and ran out of her office yelling, "No, no, no, I can't, I can't!" This mother never again visited her child alone. The child died without seeing her mother alone. The mother came to visit her at every visiting hour, but from that day on she always picked up three or four other children on the ward, in order to shield herself, to protect herself, so that her daughter would not dare to talk with her about dying. This was our mistake, and I'm trying to share not only our successes with you but also our mistakes, because I think you learn more from our mistakes than our successes. The problem we had with this patient is that we listened only to the child's needs. It is very important that we respect people's defenses. We listen to their needs and do not project our own needs.
In this case, we were very sensitive to the needs of the little girl, but in our ambitious striving to help this little patient, we became insensitive to the needs of the mother. If we had really listened carefully even to the child, we would have known that the mother was not ready for this kind of a sharing. Even the child knew it. She knew that her time was very close, that most likely she would die before the mother was ready to face it. When she sensed that her time was running out, she picked a substitute mother figure in a young nurse. If we had listened to this, we still would have invited the mother, we would have shared with her some of the communication, but we would have asked the mother to tell us when to stop, so that we would not go too fast too soon with someone who was not really ready to face things. We are not always successful, but it is important that we were honest with this patient, and told her that we would like to talk with her mother, but that we felt that the mother was not ready. We then became substitute mother figures, so that this girl could talk with a nurse about the things she would rather have talked about with the mother, if the mother had received enough help in time to face the death of her little girl.
I have spoken so far about patients' communications and needs to talk about their own impending death. I would like to say a few things on how patients talk with you when they try to communicate not the fact that they are dying but when they are dying. Sometimes I make rounds in the hospital, and I have an old European habit of shaking hands. A dying patient holds my hand differently, and I look at her and say, "Is this the last time?" The patient then nods her head. I then say good-bye to her and the next morning the bed is empty. It can be this kind of nonverbal communication that some patients use to convey that their end is very close. Another example is that of an old man who lived in our house. He was given two months to live -- he lived two and a half years. We find it rather detrimental when patients are given a certain number of months to live, because the information is almost never correct. When this man was close to dying, I went to visit him one morning with a cup of coffee and a piece of cake. He suddenly looked up and said, "I want to give you a gift." I said, "A gift?" This wasn't like him. He said, "Yes, I would like you to keep my cane." It was on the tip of my tongue to say, "But you need your cane." The cane was his only important earthly possession; he couldn't even go to the bathroom without it. But then I listened to my gut reaction and I didn't say that. I accepted his cane and walked out of his room. When I went back to get the coffee cup, he was dead. I'm using this example to convey another important message to you, and that is that people do talk about not only the fact that they are going to die but also the timing of their death. This is something that members of the helping profession can pick up from their patients, but it is almost impossible to pick this up when a member of your own family is involved. If this man had not become a member of my own family, after living with us for two and a half years, I would have been able to hear him. If this man had been a patient of mine, when he said, "I want you to keep my cane," I would have been able to hear it. I would have been able to sit down and say to him, "You don't need your cane anymore, do you?" and he would have said no and we could have talked about it. But his being a member of my own family, I was not able to hear it, and I was only aware of this communication after he was dead. I am saying this so that you do not feel bad reading the examples of my patients, thinking about the members of your own family who were dying and perhaps tried to convey things to you that you were not able to hear.
We have talked so far about the very end of life. Now I am going back to the beginning of the awareness of a terminal illness. We have asked patients if they would have been better off if they had been informed early about the seriousness of their illness, in order to give them more time to come to grips with it. The majority of our patients conveyed to us that they would have been better off if their primary physician had been honest with them at the very beginning, if they had been informed very early that they had a serious illness, and then had enough time to come to grips with it and ask for further details when they were ready to hear them. Patients who made this request, however, added two conditions, both of which have to be fulfilled for a patient to come to grips with his impending death.
The more important one is that the physician should always allow for hope. It is important to know that hope at the beginning of a serious illness is something totally different from the hope at the end of life. At the beginning of a malignancy, for example, a patient's hope is always that the diagnosis is not true. When the diagnosis is verified, that the malignancy is in an early stage and still treatable, the hope of this stage is always associated with cure, treatment, or prolongation of life. When those three are no longer probable -- and I'm not saying possible, because there are always exceptions to the rule -- then the patient's hope changes to something that is not associated with cure, treatment, or prolongation of life. The patient may simply say one day, "I hope my children are going to make it," or, "I hope God will accept me in His garden." This is hope, too.
The second condition is that the primary physician does not desert the patient. This simply means that we still care for him as a human being, when a patient's condition cannot gratify the physician's need to cure, to treat, to prolong life.
In order to teach what we learned from our dying patients, we began to look for common denominators, and we found that most of our patients go through five stages. At the beginning of the awareness of a potentially terminal illness, the first reaction is usually one of shock and denial. That is what we call the "no, not me" stage. Most people do not believe it can happen to them, that it will happen to thee and to thee, but not to me. When patients are in the stage of denial, they cannot hear what you are trying to convey to them. If the physician gives them details of their serious illness, they register them briefly and then repress them. Very often, back to work, they pretend that nothing serious has happened to them, put their head in the sand. Others may go from doctor to doctor, from hospital to hospital, in a desperate search for someone to tell them that it is not true. When a patient is in the stage of denial, there are two things you can do for him. The first thing is to double-check whether this is your problem or the patient's own need. Nine out of ten patients referred to us supposedly in the stage of denial are not really in the stage of denial, but they pick up very quickly that you cannot talk about it. This shows by the fact that you come into their room and talk about the beautiful flowers or the nice weather outside. They then play into this conspiracy of silence in order that you will not desert them. If you have double-checked and you are sure that this is not your denial, you can convey to these patients the idea that whenever they want to talk about it, you will be reachable. When a patient then drops his denial and can talk about it briefly with another human being, he will remember this remark and he will call you. Unfortunately, patients usually drop their denial not between 9:00 A.M. and 4:30 P.M., but in the middle of the.night, most of them around 2:00 or 3:00 A.M. This is the time when they are waking up, when their defenses are down, when it is quiet, lonely, and dark in the room, and then it hits them -- that's what it's going to be like! It's then they should be able to ring a bell, and the clergy, nurse, or friend should be able to tiptoe in the room, sit down, and simply say, "Do you feel like talking about it?" If you can do that, you can hear more in ten minutes at 3:00 A.M. than in ten hours during the daytime. That is when a patient can talk about his fears, his needs, his fantasies, his hopes, and his unfinished business, very often to resume his denial during the daytime with people who do not feel comfortable talking about these things. I will give you two examples: one of a woman who needed denial to the very end of her life; another of a man who appeared to be in a stage of denial but who obviously knew what was going on around him, although nobody else was comfortable facing this fact.
The first example is Mrs. W., a twenty-eight-year-old mother of three small preschool children. She had liver disease and because of her liver disease, she slipped in and out of hepatic coma, confusional states, and psychotic episodes. She was a young woman who felt that she was too young to die. She never really had the time to be with her children. During these times of confusion she was totally disoriented. She went in and out of the hospital; her husband took out a loan to pay for the hospital and doctor bills. He had babysitting problems, and he finally asked his own mother to come into the household and take care of the children. The mother-in-law did not tolerate the daughter-in-law well. She would have liked to get it over with as soon as possible.
The young father was in great distress because of his financial problems and the whole mixed-up state of the household. One day he came home from work tired and desperate, and he blurted out to his dying wife, "It would be better if you would live and function as a housewife and mother for one single day than drag out this misery any longer!" This young woman sensed that her husband counted the days; the mother-in-law wanted to get it over with as soon as possible; the three children did not make it any easier, but they made her feel even more guilty for dying on them. In her desperation, she went to the hospital in search of hope. A young resident who was busy that day told her simply, "There is nothing else I can do for you." He dismissed her without giving her another clinic appointment.
What would you do if you were this young woman? She had three defenses available. For a brief period she felt a homicidal rage. Then she contemplated suicide for a while -- but she really didn't want to die. It is most likely that such patients then develop a delusion of living in a more merciful world, and this is true of people who ordinarily do not use a psychotic defense. This woman did not need any of these three defenses at the time. She had a neighbor who was able to listen to her and who told her, "Don't you ever give up hope. If nobody and nothing gives you hope, you can always go to a tabernacle!" The neighbor took her to the priest in the hope that he could hear her. But he could not hear this woman because of his own needs. He told her that a good Catholic does not go to a tabernacle. What he did not hear is that this patient did not ask for a faith healer, but basically asked for hope, which he would have naturally been able to give her. She left the priest more distraught, more upset, even in doubt about her own religious faith. She did go to the faith healer anyway, and she left the tabernacle supposedly cured and healed. And then she did something that turns a lot of people off -- she walked around telling everyone about God's miracle, how God had cured and healed her. People avoided her. She was found a few days later in her home, not taking her medication, not sticking to the diet she desperately needed. She lapsed again into hepatic coma and she was dropped in the emergency room by her family, who could not tolerate the situation anymore. They didn't even want to wait for the physician to come.
On the medical ward, the same tragedy. The patient was well taken care of as long as she was critically ill, but as soon as she was out of her hepatic coma, she became a disliked patient. She did not behave as one ought to behave. Instead of being grateful that they had pulled her out of a hepatic coma once more, she walked up and down the hallway in a flowing nightgown telling everyone about God's miracle and how God had cured and healed her. The medical floor did not want to keep this patient and requested a transfer to the psychiatric floor. The psychiatric floor did not like terminally ill patients and they did not want her either. We call this the Ping-Pong game. The Ping-Pong game is a tragic occurrence in our large teaching hospitals. And although these discussions are done behind closed doors, the patient senses very quickly that nobody wants him.
When I saw this woman in consultation, I was very impressed that she could talk only about God's miracle. She couldn't even talk about her own children. I talked with her about God's miracle, but while listening to her I also looked at the night table and at all the things that she surrounded herself with. I was impressed that this woman had brought along all the things that a woman would take along when she goes to a motel for a few weeks. The hair curlers, books, and writing papers obviously implied that she knew that she was going to stay in the hospital for a long time. Then it dawned on me that this was one of those patients who needed denial probably until the end of her life because the reality of her situation was much too difficult to bear. I did something that we do very rarely in psychiatry. I told her that I would help her to maintain her denial, that I would never talk with her about the seriousness of her illness or about her dying, under two conditions. One was that she would allow us to help her, which implied that she had to stick to her diet and take her medication. The second one was that she would stop going to the cafeteria to stuff herself, which was a disguised suicide attempt. I did not tell her that she could not float up and down the hallways anymore talking about God's miracle, but it was impressive that this woman stopped this behavior the moment she knew that somebody would visit her often and would not desert her.
I went to see this woman at every moment possible. I think she taught me the meaning of unconditional love. She was the loneliest patient I have ever seen in all my years as a physician. She was kept on the medical floor, but she was put in the last room at the end of the hallway, the farthest from the nursing station. Not one door closed, but two doors closed forever. She never had a visitor. She was the picture of utter loneliness and isolation. One day I visited her and looked at her, restlessly sitting at the edge of the bed, with disheveled hair, with the telephone off the hook but she not talking into it. I said, "What in the world are you doing?" She looked at me with a pitiful smile and said, "Oh, just to hear a sound." This is the loneliness of the dying patients that I am referring to. A few weeks later when I continued to visit her, I was shocked by the smell and the stuffiness of her room. My gut reaction was to open the windows and let some fresh air into the room. When I took a second look at her, lying in her bed, stiff, with her arms down at the sides of her body and a peculiar smile on her face (a psychiatrist would call that a hebephrenic smile), I blurted out, "What in the world are you smiling about?" The implication was, God -- there isn't a thing in this room that could make me smile! She looked at me almost surprised and said, "Don't you see those gorgeous mimosas, those beautiful flowers that my husband has surrounded me with?"
Do you understand what this patient was talking about? Needless to say, there were no flowers in the room. We had regarded this woman as psychotic, which means poor reality testing. On some level she had excellent reality testing. She knew very well that she could not continue to live without some expressions of love forthcoming, preferably from her husband; but she was realistic enough to face the fact that these expressions of love, or flowers, would not be forthcoming until after her death, when she was in her casket. So, in order to live, she had developed an illusion sent to her by her husband after her death.
What would you do if you were to visit this patient and understand this symbolic language? Would you help her face the reality and open the windows and "get some fresh air in here"? Or would you refer to the flowers, which you know she had to see in order to live, even if you could not see any flowers? To open the windows and get some fresh air into the room would be tactless honesty, which does not help. I am sure many of you would be tempted to refer to the flowers because you knew that she had to see these flowers in order to live; but you don't need to do that! If you do not see the flowers, you should never pretend that they are there. I was very tempted to go home to my own garden and pick some real flowers and bring these to her, but this also was not necessary. What did this patient really ask for? Did she ask for flowers? No! This patient simply asked for some love, again, preferably from her husband. We were not able to get her husband reinvolved. This is the most difficult part of working with dying patients and their families. When a family has switched gears and has "written a patient off," it is impossible to get them reinvolved. This is where we come in as a substitute love object or family.
I simply sat with her. I did not open the windows, I did not bring her any flowers. I simply sat with her, holding her hand, being with her. One of my last visits with her, I sat there obviously wanting to talk about it badly. I looked at her with some questioning in my eyes, implying, Is it all right if we finally talk about it? She smiled and said, "You know, I hope when my hands get colder and colder, I hope I have warm hands like yours holding mine." Does this woman talk about dying? If you accept this kind of communication as also talking about dying, which we obviously do, then I must say that all of our thousands of patients have talked about their dying, whether they remained in a stage of denial or were able to proceed through the next stages. Among all the many patients we have followed, only very few needed to stay in the stage of denial until the very end. It is very important that you do not tear down this denial, that you respect the patient's needs and the patient's defenses. But even those who maintained denial to the very end were able to talk about the awareness of their impending death in symbolic verbal and nonverbal language.
My second example is a fifty-three-year-old man, Mr. H., who was hospitalized with metastatic carcinoma. He was beyond medical help, and his disposition became a problem because his wife refused to take him home to die. She was very disappointed in her husband, who had apparently never gratified her needs. She had two basic needs or dreams that were never met. Her big dreams had always been to have a man with big strong muscles, and a man who brought a lot of money home; he never met either need. She was resentful and bitter when he became "nothing but skin and bones" and the bills piled up, and she decided that she would send him to a nursing home to die rather than to take him home for his final care. In this way, she would be able to pursue her work and make money and she would not be "bothered" by him. The problem became an imminent one when the nursing home had a bed available for the next day, but Mr. H. had not been informed yet about the impending hospital discharge and transfer to the nursing home. The physicians did not know quite how to tell a fifty-three-year-old man that he had to go and die in a nursing home. The nurses who always complain about the physicians, that they are not honest with their patients, were given the okay to proceed telling Mr. H. Their response was that this was not their job, it was a social worker's job! A social worker finally visited Mr. H. with all good intentions of telling him that he had to go to a nursing home. But she soon became aware that his next question would be, "Why can't I go home?" and she would then be forced to tell him that his wife did not want him home and that he had cancer. The social worker finally called me in for help and consultation.
When I went to see Mr. H., I told him that I had a seminar in which we tried to learn to communicate with very sick and dying patients. He very quickly agreed to come to the seminar, and on the way to the classroom I asked him why he had said yes, when everyone predicted that he would not agree to come. He said, "Oh, this is very simple. It is because you used the word 'communication.' I tried so desperately to communicate with my wife, but I just can't seem to do it, and now I have so little time left." In one statement Mr. H. had told me about his unfinished business and also about his awareness that he had very little time left. In the classroom I asked him, "Mr. H., how sick are you?" He said, "Do you really want to know?" I said, "Yes!" and meant it. And he said, "I'm full of cancer." My initial reaction was one of fear and almost anger; I thought that this man had fooled everybody. Physicians, the nurses, the social worker, and his own wife believed that he could not take the bad news, and here this man knew all along. My fear concerned how to tell him that he had to go to the nursing home the next day. At this moment, he looked up, almost like a mischievous boy, and said, "You know, Dr. Ross, not only do I know that I am full of cancer, I also know that I have to go to a nursing home." I asked him how he knew all this, and he said with a bigger smile on his face, "You wouldn't be married to my wife for twenty-five years without knowing her." We asked Mr. H. then how we could help him, and he became immensely sad and said, "You can't help me...nobody can really help me except my wife, but she won't do it. I have never gratified her needs and, when I listen to her, it's like I could die tomorrow and there was nothing that had meaning and value and purpose in my life. It is very sad to die this way." It is obvious that he needed to hear from his wife that there was something in his life that was purposeful, and she was not about to convey this to him. I told him that I would like to talk to his wife prior to his leaving the hospital the next morning, and he laughed in my face and said, "You don't know my wife. She is three hundred pounds of anger and she would never come and talk to a head-shrinker."
I tried anyway. After this interview, which left this patient with so much unfinished business, I had to try to convey to his wife how important it was that she communicate something positive about this man's life. I called her and asked her if she would come in the next morning, before taking him to the nursing home, so I could talk with her for a half hour. She agreed to come, reluctant and angry as her husband had described her. She sat behind my desk and repeated almost verbatim what Mr. H. told us she felt about him. She said that her husband was weak, that he never gratified her needs, that he never brought much money home and was so weak in fact that one day she gave him a lawn mower and he fainted. She continued with the most derogatory statements about her own husband until I had had enough and asked her to stop. I repeated some of her derogatory statements to her and told her that I was doing this in order to be sure that I had heard her right. I went on, saying, "What you are really saying about your husband is that he was weak and that he could die tomorrow and nobody would even know that he had lived. He was so weak that one day you gave him a lawn mower and he fainted."
In the midst of my repeating her own statements to her, she suddenly got up, furious, yelling at me, "How dare you talk to me like this about my husband!" My gut reaction was to duck, because I thought she was going to hit me over the head, when in the same breath, in the same sentence, she added, "He was the most honest and most loyal man that has ever lived!" My reaction changed very quickly to one of great admiration that she was able to say the two things that her husband needed to hear so desperately. I then told her why I had done what I did and asked her if she ever said these good things to her husband. She said, "You don't say those things to your husband." To me this is like never telling anybody "I love you" and then coming up with these schmaltzy eulogies at the end of their life. I tried to tell her that it was important that she convey these feelings to him, but I was not sure that she was able to hear it.
I asked for her permission to say good-bye to him, when she was on her way to taking him to the nursing home. We went together to his room and in the doorway she became angry once more, yelling at him, "I told this woman that you were the most honest and most loyal man that has ever lived." The big smile on his face conveyed to me that he knew he had finished his unfinished business. I said good-bye to him, and Mrs. H. took him to the nursing home, where he died a few weeks later in peace and acceptance.
This is an example of a man everybody was convinced was in a stage of denial. It is very important when you are not sure that you ask an honest, straightforward question. The patient will tell you how much he knows. If you have patients in this kind of pseudodenial, it takes one person to be honest and open with the patient, and the patient will then share the fact that he has known all along. In this case, our role was merely that of a catalyst, and this is probably the role that we have to play in nine out of ten cases. Very few patients need ongoing psychotherapeutic encounters. Most of the time, our role requires little time. We have to elicit the patient's needs, hopes, and unfinished business, and then we have to find out who is able to gratify those last needs.
When a patient has one human being with whom he can talk, openly, he is then able to drop his stage of denial and go on to the second stage, the stage of rage and anger. That is the stage that we call the "why me?" stage. Those are the patients who are nasty, ungrateful, critical, and make life difficult for anybody around them. When an intern walks into the patient's room, he is greeted with the statement "Did you ever hit the vein the first time?" When a nurse comes in with a pain medication, she is greeted with the nasty remark: "You are ten minutes late. You don't care if I suffer. You probably have to have a coffee break first." When family members and relatives come and visit, they are criticized for coming either too early or too late.
What is your gut reaction to these nasty, critical patients? We either kill them with kindness, which is the worst kind of hostility, or we control our anger, but let it out on the student nurses. If we don't have student nurses, we let it out on our husband when he comes home, and if we don't have a husband, we kick the dog. Somebody always gets it, and to me this is very tragic, because we should teach our students that this anger is a blessing and not a curse. Again, we have to try not to judge those patients, but try to understand what they are really so angry about. They are often really not angry at you, but more often at what you represent. If you come in the picture of life, health, pep, energy, and functioning, you rub their faces in what they are in the process of losing. What the patient basically says is, "Why is this happening to me? Why can't this happen to you, or to you?" The peppier, the more energetic you come in, the more likely you get the patient's rage, envy, and anger. I give you a brief clinical example of anger:
We had a twenty-one-year-old man with lymphosarcoma who was hospitalized and in protective isolation for six weeks. He was totally isolated by the staff, who were very uncomfortable with him. Anybody who walked into his room got a nasty look, and the patient would turn his back toward you and stare at the wall. The staff avoided him. He was the picture of loneliness and isolation.
When I was asked for a consultation, I tried to communicate verbally with him and he treated me the same way. He turned his back toward me and was unable to communicate. I tried every possible way to reach him, and finally I gave up and headed toward the door. The moment I had the doorknob in my hand, I realized I was doing exactly what I tell my students not to do -- I was walking out on him. So I went back to his bedside, and because he didn't communicate verbally with me, I was forced to look at the wall that this young man had faced for six weeks. I suddenly had an intense gut reaction of rage and anger. I looked at him and said, "Bob, doesn't that make you mad? You lie on your back in this room for six weeks staring at this wall covered with these pink, green, and blue get-well cards?" He turned around abruptly, pouring out his rage, anger, envy, directly at all the people who could be outside enjoying the sunshine, going shopping, picking a fancy get-well-soon card, when they knew darn well he wasn't going to get well. And then he continued to talk about his mother, who "spends the night here on the couch. Big deal! Big sacrifice! Every morning when she leaves, she makes the same statements -- 'I better get home now, I have to take a shower!'" And he went on, looking at me, most full of hate, saying, "And you, too, Dr. Ross, you are no good! You, too, are going to walk out of here again."
Do you understand what these patients are angry about? They are angry with you for what you represent. You can go shopping, you can take a shower, you can go and have cofflee. You rub in what the patients are in the process of losing. If you can help them ventilate this anger and rage and not judge them -- you can help them sometimes in five minutes -- they will not call the nursing station all the time and they will very often need one-half the amount of pain medication. You can truly help these patients say "Why me?" without the need to answer this question.
Families and staff go through the stage of anger, too. I visited a mother who stood outside of the room of her dying child. She looked like a pressure cooker ready to erupt. I asked her, "Do you feel like screaming?" She turned around and said, "Do you have screaming rooms in the hospital?" I said, "No, we have a chapel." Then she was able to pour out her sense of impotent rage. "Who needs a chapel? I want to scream and yell at God -- 'Why do you let this happen to my child?'" ! took her to my office, encouraging her to scream. Many simply try to cry on your shoulder, "Why is it happening to me, why is it happening to my child?" Chaplain students should also allow families to express their anger at God. Many chaplains are very good as long as the patient displaces his anger onto the hospital administration, nurses, or other members of the helping profession. But as soon as the patient expresses anger at God, they have the need to put the brakes on. I think it is very important that patients are allowed to express their anger at God, and my answer to the chaplain students is always, "Do you really think you have to come to God's defense? I think God can take it. He is bigger than that!"
You have read so far about the "no, not me" stage, the stage of denial, and the "why me?" stage, the stage of anger. The "why me?" stage can also be the "why now?" When you sometimes see old men who have worked all their lives, who have never taken a vacation, who have saved all their money to get the children through school, who finally start to concern themselves with their retirement, and two months before retirement, find that their wives are full of cancer -- those people also say, Why me? Why now? Don't I deserve at least a year with my wife in retirement? Wasn't I a good Christian? Wasn't I a good father, a good provider? People need somebody on whose shoulder they can cry and to whom they can say, Why now? Why me? If we can help them to ventilate their feelings of grief, anguish, rage, and anger without judging them, then they will proceed very quickly to a peculiar stage of bargaining. During this time, they have stopped saying, No, not me. They have stopped questioning, Why me? They are now saying, Yes, it's me but....The "but" usually includes a prayer to God -- If you give me one more year to live, I'll be a good Christian, or I'll go to the synagogue very day, or I'll donate my eyes or my kidneys. Patients usually promise something, usually in exchange for prolongation of life. It looks like peace, but it is not peace yet; it is a truce, during which time the patient looks rather comfortable, usually requires relatively little pain medication, doesn't call the nursing station all the time -- and we often have the delusions that we have done our job. This is only a temporary truce, during which the patient is at relative peace; he feels that he is ready now to face it but asks and hopes for a little extension, usually to finish unfinished business. It is during this time that the patients put their house in order, that they take care of the last will, that they begin to concern themselves with who is taking care of the business or their children. It is usually a bargain with God. The clergy hears most of the bargains. If you do not pay attention to the bargain, you will not hear it.
I will give you a brief example of bargaining, not with God but with a physician. We had a woman who was rather difficult as a patient, avoided by almost everybody. One day she became friendly and asked if I could give her one single day without dependency on injections for pain around the clock -- she would be a good patient. This is a very unusual request, because patients usually ask for much more than one day. I asked her why she asked for only one day. She said that she would very much like to spend one day out of the hospital. Her big dream was that she could get dressed up once more, look and feel like a "million dollars." She would like to attend her favorite son's wedding. If she could do that, she would then return to the hospital the same evening and accept whatever would come. We used very extraordinary means to achieve this goal, and this woman was actually able to leave the hospital looking and feeling like a million dollars. She left the hospital for one day. In the evening I waited for her because I wondered what it must be like to ask for only one single day. She saw me in the hallway and greeted me with the words, "Don't forget, Dr. Ross, I have another son."
This is the most typical bargaining. The promises these patients make, they hardly ever keep. Mothers are the most difficult when it comes to bargaining; they very rarely keep their promises. They ask God to allow them to live until the children are out of school. The moment the children are out of school, they add the prayer to stay alive until the children get married and the day of the wedding. Then until they have grandchildren.
Almost everyone bargains with God, even if they have not acknowledged Him before. I'll quote you a few lines from a letter of a young woman who faced her death. She said about her own bargaining with God, "My thoughts were scary, too, not all of love, as loneliness and being alone with death cultivated great bitterness and resentment. So after I argued with the Lord, I called a truce with Him. If He would allow me to accept the present probability with death, I would stop being resentful, stop fighting with Him about His 'making me go.'" I'll give you another example of bargaining, as another illustration of symbolic language.
A twenty-five-year-old man in our hospital was faced with acute leukemia and died two weeks after his hospitalization. He had three little children, all below the age of three, a wife who had no profession and no financial resources, and he appeared to have a terribly difficult time facing his imminent death. I went to see him on several occasions and asked if he felt like talking about it. Each time he gave me the same answer: "Not now, not today, maybe tomorrow." His reason for not being able to talk about it was that his lips were sore and his tongue was sore. I finally thought that this was my problem, because I myself have small children, and maybe it was my need to talk about it. So I went back to his room and I said to him, "Larry, if you never want to talk about it, that's all right, too." He said, "Oh, no, this is not the problem. You don't understand. In this hospital they wake you up in the very early morning hours to take your blood pressure. Then you doze off again. They wake you up again to bring your food tray, and it goes on like this all day long. It is very difficult to have a private conversation when you are interrupted all the time." I asked him how I could help him, and he asked if I could come the next morning very early, before rounds, before anybody else could come into his room, and then he probably could talk about it.
I went back to the hospital the next morning very early. I have a habit of stopping by at the nursing station, where a nurse told me that there was no sense going back into his room because he was in the process of dying. He apparently had put up a big physical fight during the night. He had to be restrained; the priest was called, the physician was called, the family was with him, and the nurse felt that it was too late for him to talk about anything.
I must have been ambivalent about visiting him, because I listened to the nurse. Looking back at this episode a decade ago, I must admit that I have never had a single patient who had set the time and place and even chosen the person with whom to finish unfinished business and who then died prematurely. I took my good old time and about one half hour later I went to his room, only because I promised that I would come back. I expected him to be in a coma. When I opened the door, he sat in his bed more alive, more alert than I had ever seen him before and he looked at me and said, "What took you so long?" I didn't dare tell him!
I closed the door behind me very fast and he invited me to sit down and hurry up in order for him to share what he needed to share with another human being before the next interruption. I sat down and asked him, "What happened to you last night?" He said, "You would never believe what happened to me last night. I put up a big physical fight. There was this big train going rapidly down the hill and I had a big fight and a big argument with the train master. I demanded that he stop this train one-tenth of an inch short! Do you know what I'm talking about?"
This is a typical example of the symbolic-language bargaining with God. I told him that I presumed that the train going rapidly down the hill toward the end was his life and that he had a big argument with God, asking for a tiny little extension of time. He smiled and was just ready to proceed when his mother entered the room.
This is a problem that many of us have: When we are in the midst of talking with our patient, we are interrupted by members of the family, who naturally have a right to be with their dying relatives. In order to continue the dialogue and to finish the unfinished business with Larry, I used his own language, and in front of his mother I said to him, "Larry, how can I help you with a tenth of an inch?" He smiled and said, "I hope that you can help me to convince my mother to go home once more and to bake a loaf of bread and to make my favorite vegetable soup -- I always used to love it so much." The mother's response to it was a typical mother's response. She said, "How can I leave my son after a night like this?" And both the patient and I said, as if out of one mouth, "If he thinks he can wait for it, he'll wait for it." Needless to say, the mother did go home, baked a loaf of bread, brought it back to the hospital with his favorite vegetable soup. He was able to eat a little piece of bread and a little bit of the soup -- this was the last food he was able to take by mouth. He then slipped into a coma and died about three days later, very peacefully.
Larry is a good example of a young man, aged twenty-five, who had a very short time to come to grips with his own death. I think he died very much as he had lived. He was a big, strong, manly man who tried to maintain denial as long as he could. And then in one night, in three and one-half hours, he went through the stages of rage, anger, bargaining with God, and final acceptance. I'm using these examples to show you how very little time it takes to help these patients to come to grips with death, if you are available to them when they are ready to talk about it and if you do not expect them to communicate their needs to you when it is convenient for you. When a patient has finished the bargaining, he will no longer say "but" -- it is then "yes me." That is the stage of depression. Patients then often become very sad and go through two types of depression.
First, they go through a kind of reactive depression in which they mourn past losses, they talk about the meaning of a loss of a breast or a leg, or about the colostomy. They will share with you how difficult it is not to be home with the children, or for a man to give up his job. During this time of depression, we are doing a good job, because all of us have experienced losses and can empathize with our patients. But then our patients go through a different type of depression, which is very difficult to deal with, not only for the family but also for the staff. That is the silent grief or the preparatory grief. During this time they mourn not past losses but future losses. They are beginning to mourn their own death, beginning to be aware of the fact they are losing not one beloved person but all the people and all the things that have meaning to their life. During the silent preparatory grief, they do not talk much anymore; they cannot verbalize their anguish and their sadness; they usually ask for their relatives and acquaintances to come once more and then no more. Then they want to see the children once more, and at the very end they usually like to be with one beloved person or two who can sit silently; the holding of a hand or the touch is more important than words.
It is during this preparatory grief that men have much more difficulty than women, because in our society it is supposed to be unmanly to cry. When one of our patients lies quietly in his pillows and tears are rolling down his cheeks, we become very uncomfortable. We start changing flower arrangements around. We start checking infusions and transfusions that run perfectly well. And if the patient still doesn't talk or move, we often come into the room and say, "Cheer up, it's not so bad!"
Not so bad for whom? is the question! If I were to become a widow, everybody would allow me to grieve and mourn for a whole year over the loss of one person. A man who has the courage to face his own death has the courage to face the loss of everybody and everything that has had meaning to his life -- and that is a thousand times more sad. I think we have to allow these people to grieve and cry and not stop their tears, but rather do the opposite. We go into our patients' rooms and say to them, "It takes a man to cry." We allow and encourage them to cry. Those patients do not have to feel unmanly; they do not have to hide their tears. They are then able to go through the preparatory grief much more quickly and are able to reach the last stage, the stage of acceptance.
It is during the preparatory grief that the patient gives us the least problems, although the families are often beginning to get frantic. They will ask the physician to turn the clock back. They will beg the physician for some additional procedures to prolong life. I will give you an example of what happens when a man is able to reach the stage of acceptance but his wife hangs on and implies, "Don't die on me." This makes the dying patient feel guilty, and it is very difficult then to reach a peaceful stage of acceptance. It is also an example of what unfinished business can be all about.
We had a man in his fifties, a dentist, who was dying. He heard from another dying patient about our work and requested a consultation. I went to see him, and he shared with me that he had some unfinished business that he would like to discuss. He was a short, rather skinny, tiny-looking man, and he told me that he had several extramarital relationships he would like to terminate. (My gut reaction to him was "You?" because he didn't look like a Don Juan to me!) He then proceeded doing what I tell my students to do; he tried to explain why he did what he did, and that means he tried to understand why he had to have these extramarital relationships rather than to present things in a judgmental manner. He shared with me how he was always a short little boy, how he was raised by his family never to feel like a man, and how his biggest need in life was to prove that he was man enough. It took very little on the part of a woman to smile at him. He would invite her for a cup of coffee, a cup of coffee led to a whiskey sour, and the whiskey sour to the bedroom.
I listened to his confession and asked him why he shared this with me. He said he would like to terminate those relationships and to explain to these women why he did what he did. I made a big mistake at this moment in offering him my help. I said to him, "If you want me to talk to these women, I will be glad to do that." He looked at me with tremendous disappointment and said, "Dr. Ross, I thought you implied that I am man enough."
This is why I say that dying patients are marvelous teachers. When you make a mistake, and you will make many mistakes in this kind of counseling, the patient will most often correct you immediately. If you can take these corrections as lessons and learn from your mistakes, you will learn something about yourself and others with each patient that you counsel.
I told him that this was one of my problems, that sometimes we overdo things, that he was man enough to finish his own unfinished business, and wished him good luck. He was able to terminate these relationships, and he called me again to tell me that he had the toughest job ahead of him now; it was to explain to his wife why he did what he did. Before I could say anything, he put his finger on his lips and said, "Shhh, don't say it." What he tried to imply is, "Don't say now, 'If you want me to talk to your wife, I'll be glad to talk to her.'" I told him that I try not to make the same mistake twice with the same patient, and we were able to have a good laugh together. I told him that I would be available to him if he wanted to see me again. He explained to his wife why he did what he did, and his wife's reaction was, "If you are asking for a divorce, you can have it." I asked Mr. P. how he took that, and I think his appraisal was a very correct one. He said, "I think we are just expecting too much of her. This is beyond her comprehension." He finished his relationships, he explained to his wife why he had done what he did in his life, and he was a proud man. I think for the first time in his life he truly felt like a man.
He was lying in his bed with his eyes closed, very close to death in a stage of peace and acceptance -- he was a proud man -- when his wife dashed into my office, not even knocking on the door, and yelled at me, "He doesn't talk anymore." I tried to explain to her that her husband had said everything that needed to be said. She became very angry and said," I know all that, but you don't understand. I brought all those relatives from far away, and he could at least say hello to them." This woman obviously could not hear. I thought, maybe she can see; if she sees her husband's peaceful face very close to dying, maybe she'll understand it is too late to be sociable. I walked with her to her husband's room. My initial reaction was to get them all out of the room. But before I could say or do anything, she walked straight over to her husband, pinched him on the cheeks, and said, "Be sociable!" This is both a symbolic, nonverbal gesture of pinching the cheeks and the desperate statement, Be sociable. Your gut reaction is probably a very negative one toward the wife, but when you are aware of your negative gut reaction, you always have to ask yourself, What does this woman teach me? This woman in her desperate gesture to her husband, desperately asks, Don't die on me. You have always been the host. You have always taken care of the guests. I haven't even started to conceive that I soon have to take over.
In this case, we did a good job with the patient; we had not done a good job with Mrs. P. If you truly want to help dying patients, you cannot exclude the family. We always try to follow the golden rule to help the ones who limp behind in the stages. If the family can finish their unfinished business before a patient dies, then there is no grief work to do whatsoever after death, although there will always be the natural grief.
The last stage, the stage of acceptance, is perhaps the most difficult to describe. It is a patient who does not want visitors anymore, who does not want to talk anymore, who has usually finished his unfinished business, whose hope is no longer associated with cure, treatment, and prolongation of life. It is a feeling of inner and outer peace. The best description, perhaps, of a patient in the stage of acceptance is conveyed by a patient who wrote:
I have a wonderful husband who I can talk freely with and a couple of sisters, but other than that, the subject of my illness is always a taboo conversation. People shy away from any mention of it. We had a wonderful Christmas, and I am very thankful that after almost two years since the diagnosis, I feel as good as I do. I've been on Prednisone off and on since August and it seems to help temporarily. The overwhelming weakness is the worst, and trying to keep up with five active boys, two and a half years old to eight years old, wears me down very fast...but you get a little bit less particular about dust in the corners and you enjoy the boys as they are right now, and not wonder about their future -- the Lord will take care of that. There are so many things that I would like to say to them, so I am writing a lot of thoughts down on paper, and someday their dad can read it to them when they are old enough to comprehend the thoughts that I would like to leave with them. We live in such a fast-paced world, very few people really, truly enjoy their everyday living; they are always planning for tomorrow and next year. My husband and I have gone through so much, but we have lived life fully and enjoyed it more than some people in a whole lifetime. A neighbor lady came up to me at the Christmas party, looked me straight in my eyes and said, "How can you be so happy?" I told her that I was happy, and there was no sense in being sad and making everyone around me sad. Depressed feelings still come often -- often when we talk about our future years, but I just start thinking about something else or do some sewing for the children. Nobody but the Lord knows for sure...so I'm going to enjoy right now!
When a patient has reached the stage of acceptance, that necessarily does not mean that he is close to death. This is something that we could teach our children even before they go to school. The stage of acceptance simply means that people have faced that they are finite, that they live a different quality of life with different values, that they learn to enjoy today and not worry too much about tomorrow, and that they hope that they still have a long, long time to enjoy this kind of life.
I have to say one more word about the differential diagnosis between acceptance and resignation. Acceptance is a feeling of victory, a feeling of peace, of serenity, of positive submission to things we cannot change.
Resignation is more a feeling of defeat, of bitterness, of what's the use, I'm tired of fighting. I would estimate that about 80 percent of our nursing-home patients are in a stage of resignation.
I'll give you a brief clinical example of the differential diagnosis. A few years ago I went to visit an eighty-three-year-old man, a wise .old man whom I visited more socially than anything else. When I visited him, he said, "Dr. Ross, there isn't anything you can do for me except pray to the Lord that he takes me soon." I did not really listen to him. I presumed that since he was eighty-three years old, he was in a stage of acceptance and he meant what he said. I visited him for a few minutes and then went home. About a month later, I was called back to Switzerland, where my own mother was close to dying. The only patient I needed to see was this wise old man, obviously to recharge my own battery in the hope that my mother would be in the same stage of acceptance as my old friend. But much to my dismay, he was no longer this calm man, in the peaceful stage of acceptance I needed to see. He greeted me in the hall-way with a sense of great urgency and said, "Dr. Ross, did you pray?" I said no and didn't finish the sentence when he interrupted me with, "Thank God! Do you remember the seventy-three-year-old lady across the hall?" He had fallen in love and wanted to live again! He was afraid that I prayed too soon and the Lord took my request seriously! This is a good example of my not listening. If I had listened to him, and when he had said, "Pray to the Lord that he takes me soon," I should have sat down and asked him, "What's your hurry?" and he most likely would have said to me, "What do you mean, what's my hurry? I'm eighty-three years old, I sit here and watch television, maybe I do some occupational therapy projects, but nobody really cares whether I live or die. I might as well die." This is resignation, not acceptance, and it means that we have to help such people find some meaning and purpose in their lives, no matter how limited or restricted they are. Television sets and fancy occupational therapy projects will not replace human needs and human care. A seventy-three-year-old lady gave him the feeling of being needed and wanted and loved again, and he wanted to live again -- very much so.
There are many children in our society who have the same needs, and I'm speaking not only of retarded children, of chronically ill or dying children, but also of many children who are in day-care centers and orphanages. My big hope is that nursing-home administrators would consider these needs and build nursing homes with day-care centers on their premises. Those children would then be loved and cared for by the old, lonely people, and this care would give the old people a new purpose and a new meaning in their old age. Instead of watching television, they would be loved by and be busy with the small children. I think many of these old people would then die in a stage of acceptance rather than one of resignation.
For the last few years I have worked almost exclusively with dying children. I think, in general, children would die much more easily than do grown-ups, if we the grown-ups would not make such a mystery of dying. Small children, even three- and four-year-olds, can talk about their dying and are aware of their impending death. It is important that we keep in mind that at such times they most frequently use symbolic verbal and nonverbal language. We are born with only two natural fears, one of falling and one of loud noises. All other fears are unnatural and passed on from fearful adults to children.
When small children are sick or have to be hospitalized, they are most concerned about being separated from their parents. It is our belief that sick children should be allowed to be visited by their parents without any limitations.
When children reach age three or four, in addition to the fear of separation comes a fear of mutilation. This is when they begin to see death in their environment. They may see a car run over a cat or a dog and associate death with a mutilated, horrible body. Or they may see a cat tear up a bird. This also is the time when children become very aware of their bodies and are very proud of them. Little boys discover that they have something that little girls don't have; they want to be big and strong like Superman or like their own daddy. They scream when you have to take blood from them as if you are chopping off their head or their arm. Very often parents bribe their children, promise them all sorts of toys if they don't cry. They thus set a very bad tone especially detrimental to children who have leukemia and similar disorders with remissions and relapses. Children sense very quickly that the louder they cry, the bigger the toy.
We are of the belief that children should be dealt with honestly and openly, that you should not promise them toys for good behavior, that you should tell them it hurts if a procedure is going to hurt. Not only should you tell them what you are going to do with them, but you should also show them. We very often use a doll or teddy bear and allow the children to do the procedure on the teddy bear or the doll, so they know exactly what they have to face. This does not mean that they don't cry when you stick them, or when you have to do bone marrow tests on them, but they know that you have been honest with them and will take the procedure much more easily than if you had lied to them at the beginning of a serious illness.
It is after this fear of separation and mutilation that children begin to talk about death as if death were a temporary happening. This is a very important concept and one that grown-ups should understand better. I think this fear of death as a temporary happening occurs at the same age when children feel very often impotent in the face of a mommy who always says no. They feel angry, enraged, and impotent, and the only weapon that a four- or five-year-old has is to wish mommy to drop dead. This basically means, for a four- or five-year-old, "I'm making you dead now because you are a bad mommy, but two or three hours later when I want a peanut butter and jelly sandwich I will make you get up again and fix it for me." This is what it means to believe in death as a temporary happening. My own child at four years old responded in a similar fashion when we buried a dog in the fall. She suddenly looked at me and said, "This is really not so sad. Next spring when your tulips come up, he'll come up again and play with me." I believe that it is important that we allow children to have this belief although from a scientific point of view this is not correct. It is like telling a child that there is no Santa Claus when he still needs to believe in Santa Claus. As children begin to get a little bit older, they will begin to see death as a permanent happening. They will very often personalize death -- in this country it is the "bogeyman." In Switzerland it used to be a skeleton with a scythe. This is culturally determined. When a child is a little older still, he will begin to believe that death is a permanent happening. After about age eight or nine children see death very much as a permanent happening, just as grown-ups do.
The only exception to this general outline is hospitalized children. Children who are in hospitals for months usually grow up and mature more quickly than do children who live in a protected environment. They often look very young and small physically, but in terms of their concept of their own death they are much more mature than other children. I will give you a brief example of how children mature and grow up quickly when they are in a hospital for several months. It is also an example of how children can talk openly and simply about their own impending death, while grown-ups still struggle with how to talk to children about dying.
We had a seven-year-old girl in our hospital who was close to dying of leukemia. As far as the staff was concerned, she asked too many questions, and she often inquired about other children who had died on the floor. The more grown-ups she asked, the more answers she received, and she very quickly picked up that grown-ups have a problem. One day she changed her tactic and made rounds asking the staff what it was going to be like "when I die." Everybody was taken by surprise, and I think each person responded in his own typical fashion. The physician's response was, "I hear my page." We call this avoidance. Avoidance is not helpful, but it is also not destructive. It simply implies, "I'm a busy man, I don't have time to talk about things like this." The little girl did not give up. She cornered the nurse and asked the nurse, "What is it going to be like when I die?" She said, "You are a bad girl. Don't talk like this. Take your medicine and you'll get well." This is a much more detrimental response than the physician's avoidance, because it projects the nurse's own concept of death as a punishment. What it implies basically is that if you are a good girl and do as I tell you, you are going to get well, and if you are a bad girl, you are going to die -- which is a lie in the first place. This little girl then asked the chaplain. The chaplain, too, wanted to take off, but he turned around and asked her, "What do you think it is going to be like?" The little girl, relieved that somebody wasn't avoiding her question, said to him, "I think what's going to happen is that I'm going to fall asleep one of these days and when I wake up, I'm with Jesus and my little sister." The chaplain responded, "This must be very beautiful," which she acknowledged and hopped off and went back to play.
I'm not saying that all children respond that maturely and without fear to their own death, but I think we can presume that this little girl was raised in a family of love and faith and in an environment that accepted death as part of life. It is important that we raise our children teaching them that death is part of life. If we do this before they go to school, these children will never have to go through the stages we have outlined before.
Parents often go through all the stages when they are faced with the impending death of a child, and I think grown-ups have a much more difficult time accepting the death of a beloved child. It is important that we spend all our effort in helping these parents, preferably before a child dies, so they may at least reach some degree of acceptance. I will share with you one of my most precious possessions, which perhaps best describes what parents go through when they are faced with the probability of the death of one of their children. This was a birthday present given to me by a mother of a child with leukemia.
I had counseled both parents for about a year. Each time the mother felt she had made some progress, she was able to write down in the form of a poem what she went through. I will simply reproduce these poems for you and make some commentary at the end of each one. Her first poem is dedicated to her son's roommate, who was also dying of leukemia. It is called "A Fun Day at the Leukemia Clinic":
A child near death I saw today
His smile too slow, his face too gray.
His gaze not here but far away
And I wondered, tomorrow mine this way?
I hold my own and give him a kiss
His grinning return leaves a feeling of bliss
So I almost believe there is nothing amiss,
Please let him always stay just like this.
He's warm and alive and eager to smile
Jumping and hopping and running a mile.
An innocent babe without cunning or guile.
All I ask is to keep him just for a while.
Who is to stay and who is to go?
Until the last moment, who is to know?
There is no rhyme or reason, what is must be so,
But I'm screaming inside -- never mine -- never no!!
This is a poem describing a partial denial. She knows intellectually that it is going to happen to her child, but deep down inside she cannot believe, and she says "never mine -- never no!" Her next poem is again to her boy's roommmate, entitled "Please Die Soon":
He is eight years old though he looks much more,
He has been kept too long in front of death's door.
I wonder how long before he dies,
He's a ghastly preview before our eyes.
I think of my own and what I will do
And what I can give when this hell he goes through
I'm scared when I cry -- I don't want him to go
But damn it if he must -- let it not be so slow.
A child should die not so slowly it seems
It shouldn't be pain & suffering & screams.
Let him die as he has lived, laughing his life along
When mine goes -- if he goes -- let him leave with a song.
And the next poem, entitled "To Kenny -- Goodbye with Love":
You left us last night and quickly so
I guess you knew it was time to go.
Better than those who would have to stay
For one more hour or another day.
It was time to leave, while you still could be
Though physically hound, in spirit free.
You still could smile and still could sing,
Still could do so many things.
There are some battles that can't be won
The fight was hard but now it's done.
You fought so well and gave your best
And now, dear Kenny, it's time to rest.
Do you feel a degree of acceptance in the face of Kenny's death? This mother does with Kenny what we are doing with our own patients. If you cannot face your own death, it is conceivable that you can't accept your patients' deaths. Each time you dare to get truly involved with your patients and reach a stage of acceptance, it will help you to come a step closer toward acceptance of your own finiteness. This mother did the same thing with Kenny. She could not accept her own child's death yet, but she was able to accept Kenny's death. This will help her to face her own little boy's death. She tries it with other children. She writes a poem to Beth, called "Happy Birthday Nine Year Old":
Nine should be happy and ready to run
Playing with dolls, having all sorts of fun
Or setting your hair in a fancy new way
Giggling with friends and talking all day.
But not lying here in a hospital bed
With needles in arm and no hair on your head.
It seems somehow fitting and I think I know why
In a hospital born -- now come back to die.
In this poem she apparently tries to make sense out of all this nonsense. She then moves from the denial to the stage of rage and anger. She displaces this anger onto many people, onto the hospital staff. I'll quote just a few lines of one of the poems, called "Song of the Intern": "I'm the intern big and strong/ Believe me I can do no wrong./ I do things quick -- I do things fast/ Who care if things are done half *$¢%!/ Tomorrow maybe I'll practice on you,/ Bone marrows, shots, an I.V. or two./ In a couple of years I'll really know how,/ You'll just have to bear with my clumsiness now."
She is now angry at anybody who touches her little boy, and only after she has gone through weeks of anger displaced onto many people. She is now going to the grief period, and she tries to begin to conceive of what it is like when her little boy is actually dead. Her little boy's name is Jeff, and you have to know his name in order to hear how she tries to conceive of it prior to his death. The poem is called "Hospital Playroom":
Come to the playroom and look inside
See all the toys of the children who have died.
There is Beth Ann's doll and a book from Mary
A bat and a ball and a mitt from Larry.
Kenny's crayons are used each day,
And the coloring book belonged to Kay.
dBoxes of toys and boxes of joys
That's all that's left of the dead girls and boys.
I wonder what of Jeffy's we'll give
To this graveyard that said these children lived.
A puzzle, a book or his shiny new bike.
His fire engine or the red old trike.
It's supposed to be fun to come here and play
With a sick little child made happy today.
But my eyes and my heart from this place want to go
It's filled with the ghosts of the children we know.
When she has gone through this preparatory grief, she is now very close to the stage of acceptance, which is very hard for her to find because she has no concept of any form of life after death. She is a woman without any formal religious beliefs and she believes that when you are dead you are dead -- there is no heaven, no form of immortality. Therefore, it is very difficult for her to understand what is going to happen to her little Jeff. She writes a poem to him entitled "Where Are You Going, My Little One?":
I saw a boy on a bike go by
He was ten years old and blue of eye.
Slender like you with straight blond hair
But hard as I looked, you were not there.
A group of children playing ball
Boys and girls both big and small.
I was restless inside and the panic grew,
Because try as I might, I could not see you.
You are not really one of them, my little son
You'll always be a special one.
Here a short while, then gone somewhere
I could rest inside if I just knew where.
I glanced up at the clouds as they billowed by
Floating free in a peaceful sky
Lovely and light -- they have not a care
And finally my son, I found you there.
I hope that you can see the picture of the eight-year-old who, reaching the stage of acceptance, drew a peace bird flying up into the sky. This is a similar symbol of peaceful acceptance to that used by this mother when she says, "I glanced up at the clouds as they billowed by/ Floating free in a peaceful sky/ Lovely and light -- they had not a care/ And finally my son, I found you there." She then writes a poem about the future:
I cram it all in now as much as I can
For today is tomorrow for our little man.
Make memories now and hold them fast
For the future is but a thing of the past.
The feeling of panic is slow to leave
I spent so much time getting ready to grieve.
Why is he going...does nothing last?
The future should not be a thing of the past.
But some songs are short and some are long
Four years of perfection but still a short song.
But today he does sing and he's lively and loud
And the future has become the present -- the now.
After the mother reached the stage of acceptance and learned to enjoy today and not think too much about tomorrow, little Jeff picked up very quickly that his mother was able to talk about it. He started to talk about his own death, as expressed in a poem entitled "Where Did Kenny Go?":
Mommy, where did Kenny go
He was my friend and I liked him so.
It has been a long time since I've seen him
And I can't figure out where he's been.
Who killed him, Mom?
I wonder -- was it a gun or a bomb?
Oh, nobody killed him
He had been so sick
That his body wouldn't work
And he died very quick.
Just like Ma and Daddy and you
And Grandpa and Shadows too.
Where was he, Mommy, when he got dead?
Was he playing at home or somewhere in bed?
I really liked Kenny and I'll miss him a lot
But nothing bad happened, he didn't get shot.
He only did die like we all do someday.
So long, Mommy, I'm going out to play.
I hope that you noted his concept of death as a catastrophic, destructive happening when he said, "Kenny died?/ Who killed him, Mom?/ I wonder -- was it a gun or a bomb?" And when his mother saw it as a noncatastrophic happening, he said very quickly, "But nothing bad happened, he didn't get shot./ He only did die like we all do someday./ So long, Mommy, I'm going out to play." Did any of you listen to his last unfinished business and his last concern? He asked, "Where was he mommy when he got dead?/ Was he playing at home or somewhere in bed?" This is a question: Are you going to ship me off to the hospital again or am I going to be allowed to die at home? Little Jeff knew very well that when he was going to be close to death he would be sent to the hospital as most of our patients are.
It was only a few weeks later that Jeff developed pneumonia and started to talk about his impending death again. He suddenly said to his mother, "You know, Mommy, I feel so sick now that I think this time I'm going to die." A year ago his mother would most likely have said to him, "Shut up, don't talk like this, you are going to get well." This time she was able to hear him. She was able to sit down and say to him, "What do you think this is going to be like?" The little four-year-old responded, "I think what's going to happen to me is that you are going to take me in an ambulance from the hospital to the place where Beth Ann is." Beth Ann was the girl who had died a few months earlier and who was at the cemetery, a word little Jeff probably did not know. Then Jeff added: "Yes, I think you'd better make sure and tell someone to put on the light in the ambulance and make the siren go very loud so that Beth Ann knows I'm coming." This to me is one of the most beautiful examples of how small children between the ages of three and five are able to talk about their own death -- if we can face it and if we do not avoid the issue.
Jeffy lived until after his ninth birthday, just as unconsciously predicted in the mother's poem, "I saw a boy on a bike go by...." Jeff's one big wish, to be able to go around the block on his shiny new, yet old bike, was fulfilled briefly before his death. He asked his parents to put training wheels on it, and, almost like a drunken man, because of his brain involvement, he was able to ride around the block.
When exhausted, he returned to his bedroom. His parents removed the training wheels, brought the beloved bicycle upstairs to his bedroom -- on his request -- and left him alone. It was only after his precious possession received a beautiful new shine and wax that he asked his younger brother to visit him in his room and presented the bicycle to him as an early birthday gift. Jeffy died a couple of weeks later, proud that he had achieved what he always wanted and even happier that he was able to pass his beloved bicycle on to his brother, who was healthy enough, and by now seven years old, so he could master it without training wheels.
These apparently insignificant things are most important and belong to the unfinished business that young' children have to complete before they are able to let go.
I had another mother, whose boy died at age twelve, who was convinced that he did not talk about dying. It was only after his death, with our help, that she was able to find a poem that the twelve-year-old wrote one year prior to his death. I print this poem to show you how very mature and grown-up some of these children are when they talk in their own language about their impending death, which grown-ups do not want to hear about. He wrote a poem entitled "The Flame":
The flame is like a human,
It lives and dies.
Its life is a wild impetuous one
During its span -- it frolics dances and
Appears to have a carefree existence.
Although it might be joyous in a short period
It has a tragic death
The tragedy is in its struggle not to die.
But first the flame casts an eery bluish magnetism
Just as it's about to let go, it flickers and springs
Back to life again.
At that moment it appears that the vital desire
For survival will be the victor.
But neither flame nor human is destined for eternal life
Death is near -- the flame sputters as it reaches out to
grasp on to a dangling string, trying to resist its
overshadowing fate -- but to no avail...
Death has exhausted its opposition
This is the language of a twelve-year-old a year before his death. My hope is that more parents are aware that children can and will talk about their impending death, that they will help parents to face their death, and that we do not avoid the issue but rather teach it to young children years before they have to face their own death. If we could do that, we would not need specialists on death and dying, patients would not have to be so terribly isolated in our hospital wards, and we could finally face up to the fact that we all have to die sooner or later.
We have worked with dying patients over the past decade and have spent much time with parents and siblings of dying children. With the brief moments that each one of us has between the diagnosis of a terminal illness or an accident and the actual death of a patient, time has often been a problem. Many therapists and physicians simply stay away from such "clients" because they are concerned that counseling such a family would require too much time. This is really not correct. We have referred earlier to the use of symbolic language and the need to teach and learn this art of communication and interpretation whenever possible.
It is with the help of a technique developed at the Kantonsspital in Zurich, where I studied medicine, that we have been able to understand the comprehension of illness, trauma, and impending death in young children. We have used this simple and non-time-consuming method in helping siblings (case of L.) and children of dying parents (cases of D. and B.) to express their concerns and their concepts, in order to better assist them in a crisis situation in which there is not much time for longer counseling.
Since practically no literature is available about this approach, I would like to present a brief outline of the method of collecting and analyzing such data. I have asked Dr. Gregg Furth, a student of mine, to summarize his experiences, as his time spent with Susan Bach in England has given him more expertise in this field than anyone else working currently in the United States.
Copyright © 1981 by Elisabeth Kübler-Ross and Ross Medical Associates