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About the Author: Dr. Roger Cole has worked exclusively as a palliative care physician since 1987, but was originally trained as a cancer specialist. He has published numerous articles on spiritual care of the dying and the use of meditation for greater effectiveness in the health profession. He lives in Australia.
dear john ...
John had AIDS.
Diagnosed four years before I met him, he had fought a desperate battle to survive through orthodox and complementary, or alternative, medicine. His initial courage and optimism gave way to depression and hopelessness as he sensed failure and faced the inevitability of death. Through love, his partner and family would not give in, and encouraged him to keep on fighting. "With the right attitude, you can still beat it," they told him. God knows he had tried, he thought.
By the time he was admitted for terminal care, he had suffered. With dark-rimmed eyes in a sunken face, John's body was wasted. Oozing welts dotted his skin, which was tightly drawn over skeletal features. His ribs protruded beyond painfully thin legs that no longer bore his body's weight.
John was totally dependent. He was also moderately demented and knew he was "losing" his mind. This misery was compounded by incontinence through AIDS-related diarrhea. His caregivers were completely exhausted and requested his admission. John was only twenty-six.
When I met him it was evident that he was close to death. He appeared completely wretched. Yet his eyes were furtive and begged you to go away. I could see it would serve no value to make him tell me his medical history; he needed gentleness, confidence, and a sense of human kindness. However, he resented my intrusion and I was challenged about how to engage him.
"Does it hurt anywhere?" I asked.
"Allover" he replied. "Look at me, what do you think!" He was angry and confronting, and I could feel his resentment. I was confused about how to go on.
"John, I will try to make you more comfortable, and do something about the diarrhea," I said. "I have no idea what it is like to be where you are. I can see you have suffered terribly and I imagine that to be almost unbearable."
"Almost!" he scoffed. "Almost! I can't stand it any more."
"Help me understand it better," I offered. "What is so terrible now? What is it that you can't stand anymore?" Reluctantly at first but then with animation, he told me about losing his health and with it his dreams and aspirations. He described his physical distress, his black depressions, his anger at those who were "incompetent" and had failed to heal him. He described his loss of dignity. He told me how he hated counselors and those who preyed on people like him. Then he went quiet and appeared to withdraw into himself. I decided to take a risk. Rightly or wrongly I asked him, "Do you believe in any form of afterlife?"
He surfaced from within himself. Despite being exhausted, his eyes were fierce and their message was clear: "No bedside conversions," they said. His words were angry, forceful, and very final: "When you're dead, you're dead. Finished!" In the uncomfortable silence that followed, I felt I had blundered and was at a loss for what to say. I had hoped for a positive "afterlife" discussion that would have brought him some comfort. Instead it seemed that I had ruined any chance of establishing a trusting relationship. But something occurred to me about the manner of his rejection. I realized that, since he had suffered for so long, eternal life to John meant eternal suffering. He could only project what he was now experiencing into the future. His hope lay in death, because this represented an end to suffering. My introduction of the afterlife, though well-meaning, was a direct challenge to this.
I sensed that to give him hope I had to tell him he was dying, and that it would soon be over, even though his family had implored me not to. I said, "John, you are very near the end. I think there are only a few days remaining. We will make these comfortable for you. There is no need to fight anymore. Your suffering will soon be over." There was a visible change in him. His eyes softened and filled with tears, the shadow of fear lifted. His anger dissolved and he uttered the last two words he ever said to me: "Thank you."
I sat with him as he relaxed, then left the room to see his family. Naturally they were very angry with me for speaking to him of dying, but I helped them to understand that I had been sensitive and that it was now better for him to know.
Before John died the following day they had some special time together. Instead of imploring him to keep on fighting they allowed John to die peacefully. In accepting his death, they supported him and let him go.
Before I met John I had already been on a spiritual path for some years. He taught me that spirituality is about sensitivity and responsiveness rather than form and doctrine. Sensing that his principal need was freedom from suffering, I was able to give him hope. By finding a way to bring peace to his mind, I believe I served a spiritual need. By communicating this to his family, I helped them to let him go. In turn, this allowed him to die peacefully.
In writing this book I am indebted to John. He made me wonder. He made me wonder why some people have to suffer. He made me wonder why we become "spiritually blind" and separated from our souls. He made me wonder what freedom from fear would be like; how it would be to experience the peace that was evident when he knew he was dying; and whether I would put off finding out until my own death.
By making me wonder he made me seek understanding.
making a difference
I hung up the phone feeling satisfied that Peter and Wendy were very happy. In less than twenty-four hours their despair had subsided and they were hopeful, which is remarkable considering this was an outcome of palliative care.
On the previous day they had been in my consultation room. At fifty years of age, Peter had incurable secondary spread of cancer to his spine and liver. Ten months earlier, he had undergone surgery to remove the cancer when it was only present in its primary form in the rectum. The operation had been proclaimed a success, so they were now very angry with their surgeon. They were also angry with their local doctor, who had originally misdiagnosed rectal bleeding as hemorrhoids (piles). Moreover, Peter was in pain and had been told that chemotherapy was of no use in this type of cancer.
As I went over Peter's history with him, I explored his reactions to the critical events. I asked questions like, "What did you think when you first noticed the bleeding?" and "How did you feel when you were told it was cancer?" From the time of his original presentation to the time of diagnosis, there had been a delay of three months, so I also asked whether he had any feelings about this.
When he first noticed the bleeding Peter immediately feared cancer, because his father had had "a terrible death" from the same disease. When the diagnosis was confirmed he was shocked and angry that his doctor hadn't acted more quickly. He and Wendy were full of resentment because they believed that he would have been cured if it had been found earlier. I listened as they expressed their feelings—people need to let go of anger and blame in order to move on with their lives.
When I explored Peter's reaction to the relapse, he told me that it was devastating. He had been reassured by the surgeon, and discovering that the cancer had spread was a greater shock than the original diagnosis. He couldn't comprehend how it had happened and felt angry with the surgeon for misleading him.
When he was told that the cancer had spread to his liver and was given a prognosis of less than six months to live, he felt hopeless and depressed. Peter explained how his father had succumbed, with a painful death, only two months after cancer of the liver had been diagnosed. Peter was also despondent about financial problems and concerned for his wife and adolescent children. Neither Peter nor Wendy knew what to tell the children, and the strain of pretending that all was well had been telling on them. Furthermore, they were exhausted from sleepless nights caused by Peter's uncontrolled pain.
By the time I had examined Peter and was ready to communicate with him, we had a good rapport. Asking him about his experience of the disease had enabled me to understand his feelings and to be aware of his current problems and concerns. In listening to him I had also established how informed he was and had developed an intuitive sense of how to relate to him. It was now important to emphasize some positive and hopeful aspects without giving false hope.
I said that although cancer had spread to the liver, there was no immediate threat to his life. He still appeared healthy and the liver was functioning well. I told him that a liver must lose more than 70 percent of its capacity before the situation would become life-threatening. I explained to him how cancer behaves so that he better understood the disease and how it had spread after surgery.
As it had taken ten months for the secondary cancers to appear, I told Peter that his cancer might not behave too aggressively. I was hopeful that it would be slow-growing and said that the prognosis of "less than six months" was an average, meaning that many people live longer. I also told him that I had seen some people live for more than two years under such circumstances.
Peter's fear began to recede and he asked me about death and dying. Once the immediacy of death becomes more distant, a patient often finds the courage to table it for discussion. Usually he or she states that it is the process, rather than death itself, that is the main fear. Pain, dependency on others, losing control, and separation from loved ones are the things that distress people the most. As he talked to me about all of these things, Peter relaxed. He was relieved to share the burden. I was able to reassure him that his pain would be controlled, and that very few people die in pain when there is good palliative care. I also told him that complete dependency is rarely protracted in patients with liver secondaries so he would not become bed-bound for months at the end of his life.
I finished the consultation by prescribing pain medications and telling Peter and Wendy that I operate as part of a team. A nurse would visit the following morning and give them a phone contact for after-hours support. We had a social worker who could help them address any practical matters, such as financial problems, and who could offer counseling services. Having noted their concerns about the children, I recommended that they keep them informed and say that, although Peter's cancer wasn't going to get better, he was going to stay well for as long as possible. This reflected the current position and I offered to meet the children to help them to better understand the disease.
At the end of the consultation Peter and Wendy said that everything was much clearer and more hopeful. By understanding the disease and their circumstances they were better equipped to deal with the uncertainty of their lives. They could now look ahead and see that there was a future. They also felt supported. Speaking to me the following day, Wendy said that the nurse's visit had given her a feeling of security that she would not be alone.
Excerpted from mission of love by Roger Cole. Copyright © 2002 by Roger Cole. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.