Will I Die in Pain?

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York, and, after relocating to California, spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her extensive personal knowledge and expertise to enlighten our readers regarding the challenges associated with chronic illness and their profound effects on family relationships and human dynamics.  

“Tell your heart that the fear of suffering is worse than the suffering itself. “― Paulo Coelho

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One of the greatest fears expressed by people who live with terminal illness is the fear of physical pain. Pain is a real component of many pathological processes: Advanced cancer and many neurological conditions, for example, often cause significant amounts of discomfort as people approach the end of life. Knowing this, many patients suffer greatly as they consider — all too often silently — the process by which their lives will end.

Fear of pain is normal. Our bodies are physiologically programmed to respond with alarm to the sensation of pain, and we are psychologically conditioned to respond to this alarm with the emotion of fear. In Western society in particular, we are taught to treat pain as an enemy to be eradicated at all costs. Sadly, this conditioning feeds our fear and contributes to our suffering when we are confronted by the possibility of physical pain.

He was terrified that his pain would become unmanageable as his death from AIDS approached.

Donald was a 40 year old man with hemophilia —  one of many who contracted AIDS from the transfusions that for many years had saved his life. And like most men with hemophilia, he was already quite accustomed to physical pain, having suffered multiple “joint bleeds” throughout his lifetime, which left him with crippling arthritis and chronic pain. Nonetheless, he was terrified that his pain would become unmanageable as his death from AIDS approached.

Donald had recently witnessed the death of his younger brother, Andrew, an ordeal that was now feeding his fear.

“What am I going to do if I can’t stand it?” he asked his wife over and over again, his eyes shining with unshed tears. “What if I can no longer speak? How will you even know I’m in pain if I can’t talk to you?”

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Donald had recently witnessed the death of his younger brother, Andrew, an ordeal that was now feeding his fear. Andrew had suffered from AIDS-related dementia, and, like many AIDS patients at the end of life, was unable to communicate for several weeks before his death. 

But it wasn’t just the idea of physical suffering that frightened Donald. “I’m not really afraid of the pain,” he told me one evening when we were alone. “I’m afraid that pain will turn me into someone I’m not.”

A strong, vibrant man who valued his autonomy and the stoicism that had come with a lifetime of chronic illness, Donald feared not so much the sensation of pain, but the reality that pain could rob him of what he valued most.

Like all fear, the fear of pain is lessened when we talk openly about how we feel; this is especially true for those who are terminally ill. Fear creates resistance and withdrawal. It drives us deeper into the place where our suffering resides and isolates us from the people who are most able to help.

That evening, I spoke with Donald about the things he feared — the loss of independence; the loss of physical strength; the loss of control that he believed would come as death approached. And as he talked about his fears it opened the door to a discussion about what to expect as his disease advanced.

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Later, Donald talked to his doctor and learned about the different methods of pain control that were available to him, which diminished his anxiety and his distress. Soon, he was able to speak openly with his family and tell them his wishes regarding pain control and end-of-life care. These were not easy discussions, and they were accompanied by many tears. But as he opened his heart, his fear lessened, and he found a measure of peace.  

Donald died virtually pain free and spent his last days enjoying his family and the people he loved.

“The only real voyage of discovery consists in not seeking new landscapes but in having new eyes.”  — Marcel Proust