Dignity Project: Deborah Esther Schifter, Couple’s love stands life-ending test of ALS
In the 1990s, years before my husband, Alan Schiffmann, was diagnosed with ALS, when physician-assisted suicide was regularly in the news, Alan took a strong stance. He would assert that when quality of life is so diminished by disease, when all that’s left is suffering, people should be able to choose to end it.
In 2002, a few weeks after Alan’s diagnosis, I had this thought: At some point, Alan would ask me to help him die. Sitting with a close friend, I wept as I first articulated that expectation. She said softly, “That time is a long way off. And when it comes, you and Alan will be clear about what to do.”
Two and a half years later — Alan was still walking, albeit with a walker, and talking, though his speech was slurred — he decided we should have an end-of-life discussion. By that time, I knew that, as difficult as it might be, my choice was to enact Alan’s wishes. “The one thing is that you shouldn’t make irreversible decisions out of depression,” I told him. “There’s no cure for motor neuron disease, but it’s possible for depression to end.”
We discussed options with a palliative care doctor, who described the process of ceasing nutrition: After several days, the patient gets spacey and eventually loses consciousness, and after a while, the body shuts down.
By spring of 2009, Alan’s condition was in steep decline, and a hospice counselor came to our home. When I introduced Alan to the counselor, I took in the scene from her eyes: his blue striped pajama bottoms, long-sleeved white T-shirt, strawberry blond hair, still thick and wavy, combed back from his forehead.
A black pack hung on the back of his wheelchair holding a pump and bag of formula, a thin tube emerging from the pack, connecting to a port taped to his shoulder. From the port, a wider tube slipped under his shirt at the neck down to Alan’s stomach.
Another tube extended from a towel placed on his lap to a urine collection bag hanging at the side of the wheelchair. Alan’s arms rested motionless. His head tilted far to the side, neck muscles no longer strong enough to hold it up.
The counselor and I sat on the floor within Alan’s line of sight. She told him, “I can see in your eyes that you still have energy for life.” Alan’s nod was barely perceptible, as was his smile, which another might interpret as a grimace.
“What fuels that energy?” she asked.
“Deborah,” he said. I loved hearing this, though Alan could barely push enough air through his trachea to make a sound. “And,” Alan began to speak again, “curiosity.”
Even though Alan could no longer walk or raise his arms, no longer eat or make jokes, could hardly speak, his intellectual curiosity kept him going. Every day he followed the news, listened to NPR programs, and watched sports. He wanted to know what would happen next.
Toward the end of our meeting, after reviewing with the counselor the possibility of stopping nutrition, Alan said, “I only hope ...” Wanting to help him conserve strength, I finished the sentence: “You only hope that something else will take you before you have to make that decision.” Alan said, “No,” and though every word burned precious energy, started over. “I only hope that when the time comes, I will have the courage to make the necessary choice.” On May 9, 2009, at 1:30 a.m., in the midst of a panic attack resulting from lack of oxygen — Alan’s diaphragm and intercostal muscles no longer strong enough to allow him to draw in enough air — he spelled out for me, I—W—A—N. I repeated back each letter to make sure I got it right, guessing at the words he intended. “I want...” I repeated each letter, dreading what was to come. “I want to die.” I told Alan we would meet with the doctor in the morning to talk about how to proceed.
After administering another dose of morphine, as instructed by the hospice nurse, I got into bed with him and held him. For a few minutes more, he gasped for breath and then fell asleep. I followed him, and when I awoke, he was gone.
Through the course of his illness, Alan discovered that he wanted to stay alive under conditions he would not have believed when he was healthy, but knowing that he had control to end his life was essential to his well-being.
Deborah Esther Schifter lives in Northampton and works in math education; she is writing a memoir about her late husband, their relationship, and the process of disease.