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Friday July 30,2010

What Dying People Want

by David Kuhl, M.D.

Introduction

Facing Death

Talking about dying is very difficult. We are afraid that talking about death beckons it. We all know death is inevitable; death fascinates and disturbs us; but we don’t want it to happen. Maybe, we think, if we don’t talk about death, death might not notice us. Maybe if we ignore death, we might delay or even elude it.

For more than fifteen years I have worked, as a doctor, with people who were dying. They taught me many things—for example, that I didn’t know how to talk to them about dying. And peculiar as it may seem, they taught me a lot about living.

Ten 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 in Vancouver 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 nagging pain in her chest. It was no surprise that she had such pain, for she had lung cancer—inoperable, untreatable lung cancer. But very often we could control patients’ pain with medication. Alice’s pain seemed not to respond to anything we tried. I experienced a growing sense of frustration and an increasing wish to avoid witnessing her pain. 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. Alice was facing death, and I was facing a sense of failure.

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?” The team had cared for many other people with lung cancer. Those people were testimony to the fact that cancer pain could be controlled, shortness of breath usually managed. Logically, we could only assume that Alice’s pain was just like that of the other patients, and yet its effect on her was very different. This seemed to be a rare case of pain that could not be controlled. What were we missing? What was different about Alice? What was I to do? How could I understand and treat this woman’s pain in a way that could free her of it or at least reduce her suffering?

With a sense of desperation, I entered her room one more time. Her grimace told me that she was still in terrible pain. I decided to ask a question I had never asked a patient before. Holding Alice’s hand, I said, “We haven’t been too successful in decreasing your pain. I wonder whether it’s possible that the pain in your chest isn’t a pain that’s coming from the cancer. I have a sense that it is a pain in your heart, one I can’t touch.” Her eyes told me I had said something that rang true for her.