Susan Ducharme Hoben

Choosing the path of a peaceful end-of-life

Susan Ducharme Hoben

The love of my life appeared unexpectedly in the person of my sister’s future brother-in-law. I was 16. This handsome, witty, romantic Prince Charming pulled me into his orbit with a power I couldn’t resist. He was 21. Bruce and I married four years later during spring break of my junior year at Cornell.

For over 45 years we did everything together. We laughed, cried, danced, and sat quietly together. We swam, sailed, and traveled. We savored good food and wine and shared books.  We made babies, built two houses, and welcomed grandchildren. We celebrated life. 

Then, at the start of a sparkling Labor Day weekend, doctors found a tumor at the junction of Bruce’s stomach and esophagus. With the tumor hidden deep within his body, I knew this would not be a case of early detection. A Google search confirmed my worst fears. Many die within a year of noticing the first symptoms.

When, after six months of chemotherapy and radiation, it became clear modern medical technology was no match for the tumors that had invaded Bruce’s body, he declined further treatment. The decision was Bruce’s alone, though he knew I would have done the same.

Our end-of-life wishes had evolved as we watched my mother die peacefully and witnessed the emotional carnage of other family members who did not go gentle into that good night. The evening before my emergency open heart surgery eight years earlier, Bruce had lovingly assured me he would be able to withhold treatment if I were unable to speak for myself. Now, with his death certain, it took a few days of processing to get from intellectual certainty to emotional peace, but once there, neither of us looked back or second-guessed his decision.

We had seen first-hand well-meaning physicians try in vain to extend the life of a terminally-ill patient, at a terrible cost, financial and emotional. Bruce chose a different path, one that harkened back to a time when death was a natural part of living, when friends and family gathered around a loved one to ease their passing. A battle to the end would have wasted precious time and energy. He was going to celebrate life, unfettered by drip lines of poison. No more chemo. No feeding tubes.

With the decision behind us, and three months ahead of us, we lived in the present. I gathered family at our house to share stories and photos, an Irish wake with the celebrant still alive and laughing. I rented a spacious house on the ocean where our children and grandchildren joined us for a week-long celebration of all the things we loved to do as a family. His colleagues roasted him. I savored the here and now and burned those moments in my mind and my heart, so I could pull them out and wrap myself in them when the days and nights were empty.

We wrote his obituary together. I drafted the basics. We sat side by side on the living room sofa as he carefully chose every word, every person and accomplishment to include, and the opening sentence that would describe how he died. Bruce Hoben peacefully departed this world at home surrounded by his loving family. He wanted no mention of a courageous battle with cancer, though if courage is the ability to do something that frightens you, to face death, the big unknown, on your own terms, rather than continue a futile battle with treatments that were almost certain to fail, then Bruce was certainly courageous.

A week before Bruce died, on a warm June morning, our family gathered around the patio table to plan his memorial service. We shared our sadness over the loss that was to be, our hopes for our remaining time together, and our desire to continue living fully as long as life was present. We discussed how to go about saying goodbye, both in the immediate reality and in memorial. Bruce asked our son Justin to sing ‘If Not for You’ and dedicate it to me. Dylan’s raspy voice flooded my memory, calling forth a boundless love that took hold of my heart and caught in my throat. I couldn’t breathe.

Near the end, as we lay together in bed reading, or at least trying to, Bruce put down his book. “I’m not afraid,” he said calmly. It required no explanation and no verbal response. I moved across the king-sized bed reaching out to put my arm around him as he turned on his side. Almost the same height, it didn’t matter who was the “big spoon” and who was the “little spoon.” It was still a perfect fit. As I wiggled and nestled into a comfortable position, our heartbeats and breathing slowed and synchronized.

From that moment I have not been afraid of dying. When the end finally came, it was indeed peaceful, for Bruce and for the loving family that surrounded him.

It was only months later, after experiencing my first bereavement group meeting, that I learned that  Bruce’s death was not typical. One after another, grieving spouses recounted heart-wrenching tales full of tears, anger, regret, and loneliness. When it was my turn to share, I was reluctant to speak, feeling almost guilty that my experience had been so different. Was our experience not the norm? Had we done something different? Was there more than one way to face impending death? It was at that moment I decided I had important insights and lessons to share.

 

While we all face different circumstances, I hope what I learned over a lifetime of watching people die, and just as importantly, watching people live, will help others find ways to make this last stage of life as peaceful and dignified as possible for them and those you love.