Chapter 1

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 inOn Death and DyingandQuestions 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 istheway 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 astatus nascendiat 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?"

"My mommy."

"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 uswhenthey 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 thenonverbal symbolic languageis 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 im

Excerpted from Living with Death and Dying by Elisabeth Kubler-Ross
All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.