What Dying People Want by David Kuhl

• Table of Contents
• Read an Excerpt

Table of Contents

Read an Excerpt

Eight years ago, I sat next to a dying woman and wondered about the pain she was experiencing. Her name was Alice. She had cancer. She had been on the palliative care unit of St. Paul's Hospital for a considerable amount of time and I felt that I knew her well. Every day I went in to hear her report of the poorly controlled, nagging pain in her chest. Of course she had pain in her chest; she had lung cancer, inoperable, untreatable lung cancer. She was facing death and in another way seemed to be hanging on to life. I experienced a growing frustration and in increasing sense of wanting to avoid seeing her. Her pain, her suffering, her anguish was so real, so apparent in her eyes and in the tone of her voice. I didn't want to give in to the sense of emerging incompetence I felt about not being able to help her by reducing her pain. Team members asked, "Isn't there anything else we can do-increase her medication, add another drug, call in the music therapist, pastoral care, or perhaps physiotherapy?" But nothing seemed to work. Alice was facing death and I was facing a sense of failure. The team had cared for many other people with lung cancer. They were testimony to the fact that cancer pain could be controlled, shortness of breath usually managed. Alice's pain was just like that of the other patients-and yet it was entirely different. Her pain was evidence that not all pain can be controlled. What were we missing?

With a sense of desperation I decided to ask Alice a question I had never asked a patient before. Holding her hand, I said: "We haven't been too successful in decreasing your pain. I wonder whether there is a possibility that the pain in your chest is actually not a pain resulting from the cancer. I have a sense that it is a pain in your heart, a pain I can not touch." She looked at me intently. She said "Yes. The pain is in my heart. It's the difficulty I'm having with my daughter, Ruth. She is marrying a man I do not approve of and I told her so. My daughter, my only child, did not like what I had to say. But I had to speak my truth because by the time she realizes that it is true, I will no longer be alive. I don't expect….and what's more, I don't want this pain to be taken away."

Caring for Alice resulted in an "aha" for me. Unless the situation changed between her and her daughter, Alice would die suffering the loss of relationship with her only child. There were no medications for the anguish she would feel.

Dying is more than just a physical event. It is a process which includes one's whole being-the physical, psychological and spiritual. Alice's situation resulted in a new insight for me; namely, that I was ill equipped as a palliative care physician to address or understand what psychological and spiritual pain was all about. Medical school and residency training had not prepared me to meet that challenge. The best I could do was to acknowledge that her experience of pain was beyond my skill and training at that time. Why had it been so difficult for me to ask her about the 'pain in her heart'? Why had it taken me so long to recognize the complexity of her pain?

Alice made me think and feel differently about 'whole person care'. I started to ask some different questions. How would I begin to more effectively address the spiritual and psychological pain and suffering of the people I would meet each day in my practice? How could I address it if I didn't even understand it? What if I was Alice? What would it be like to know that I would die within hours, days, weeks, or months? If my doctor told me I had a terminal illness, would I live differently? Would I practice medicine differently? If I had a 'true' understanding of the experience of living with a terminal illness as told to me by my patients, would I practice medicine differently? Does the 'inside' of us change once we have been told we are going to die? Do our relationships take on a different perspective? Does our understanding of God influence us during that time? Who could and would answer these questions?

Like Alice, only those people with a terminal illness know what it is like to live with that illness. They are our best teachers. They are the ones who could answer my questions. How could I learn to listen, to really listen to what they were telling me, rather than for the information I wanted to hear?