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Her work has vanquished the conspiracy of silence that once shrouded the hospital's terminal wards....In so doing, it has shown how, and with what quiet grace, the human spirit composes itself for extinction.
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 problemsgetting 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