Out of This World
When I met Jasper, I was a third-year medical student doing a nine-month rural clerkship, and he was an eighty-year-old man in a coma.
Family members surrounded Jasper--a tall, broad-shouldered man--as he lay in the hospital bed. His wife, Esther, a petite, lively woman also in her eighties, stood by his head, grasping the bed rail. At the foot of the bed stood their son, a middle-aged man with a baseball cap on his head, his hands fisted in his pockets. Flanking the bed were his sisters (both nurses), one with curly hair and a baggy sweatshirt, the other slim and well-groomed. A warm summer breeze wafted through the room, bringing the scent of fresh-cut grass.
Jasper had been admitted two days earlier. In the days before that, Esther said, he had "drifted," becoming quiet and very sleepy, and eating little. On admission, he'd been severely dehydrated and short of breath.
His two daughters had always hovered in attendance. Now one anxiously quizzed my supervising physician about her father's sodium level. This led to a discussion of his care.
"I want everything possible done for him," Esther said. Her children agreed.
In the days that followed, we did all that we could for Jasper. Since he couldn't take nourishment by mouth, we fed him through a nasogastric tube. In addition to carefully lowering his sodium levels, we took images of his brain and ordered lab tests, attempting to find other causes for his lack of arousal. But the results showed only mild brain atrophy, nothing acute.
Jasper never responded to touch or sound, never said a word or moved on his own--not even a smile or a wince. As the week drew to a close, with no improvement, the family's wishes began to diverge.
"Withholding nourishment might be the only way to let Dad die peacefully," ventured one daughter.
"I can't bear the thought of Jasper starving to death!" Esther replied quickly.
Over the next few days, the tensions grew between Esther and her children. Her constant presence at Jasper's bedside spoke volumes about her fear of losing him. I could vividly imagine them as they might have been in their younger days--she a witty, beautiful, bright-eyed young lady, and he a stoic Scandinavian farmer with a gentle soul.
Seeing Jasper's plight, I couldn't help but compare it with my own father's last month of life, spent battling leiomyosarcoma, a very rare, aggressive cancer that travels throughout the blood and causes tumors in smooth muscles.
My father, divorced and living alone, wanted to die at home. I was only seventeen at the time, but I supported his wishes. I visited him daily and, together with my uncle and a hospice nurse, did everything possible to help him.
My father faded quickly. His frail body bore the signs of his three-year battle with cancer--one thigh emaciated after a tumor's removal, his rib cage scarred where chest tubes had been inserted to treat his collapsed lungs. He'd open his eyes wide when I greeted him, but with each day he ate and drank less and grew more disoriented. Finally, he became delirious.
Despite his suffering, it seemed he was trying to hold on--waiting for my arrival each day. It hurt to see him in such pain. One afternoon, I said, "Please, Dad, it's time to let go...it's okay...you'll be safe...and I love you."
In the early hours of the following morning, he passed away. He was finally at peace, with no more suffering.
Only months later did I realize how much my father's end-of-life ordeal had sapped me. Now, I could relate to Esther and her daily vigils alongside Jasper: although I'd reached a point where I was ready to let go, maybe she hadn't quite gotten there yet.
Ultimately the family deferred to Esther: Jasper was put on a long-term feeding tube and moved to a local nursing home.
Months later, visiting the nursing home with a physician who worked there, I happened to spot Jasper's name on the resident list. His feeding tube had been plugging up, so we stopped by his room to see if we could fix the problem.
In some ways, I felt I'd walked back into the scene I'd left months before.
Sunlight streamed in through the window. Calla lilies sat on the nightstand. Jasper lay in bed. His respirations rasped amid the morning silence, but he showed no distress. His position was the same as when last I'd seen him--his hands curled on his chest, his head tilted back, his mouth forming a perfect O.
I touched his hand. His skin was warm and dry. Gently, I pinched his wrist. He didn't stir.
"Jasper!" I called softly. No response.
I lifted his closed eyelids; no flicker.
According to his vital signs--heart rate, respirations, blood pressure, temperature--he was alive. But Jasper was gone.
Sitting down by his bed, I fantasized that he would suddenly turn his head, open his eyes and start talking to me. But I realized that this was my own soul crying out for signs of life.
Jasper's body seemed like an unused vessel, drained and empty. Yet I felt, too, as if I were in a sacred space--a place where somehow time didn't turn. I wondered if Jasper's soul was still there...even now, could he somehow sense or see me?
Sadness welled up inside as I remembered my father and contemplated the result of Esther's desire to keep her husband alive. Surely she hadn't comprehended what kind of existence this would mean for Jasper--for their whole family.
"She still comes to visit him, but less and less often," the physician said. "And the other family members hardly ever come by."
Questions kept turning over in my mind: Did we have enough conversations with Esther? Had we truly listened to her? To the family? Had we given them adequate explanations?
If I'd had a chance to talk with Esther and her children, I thought, I would listen to their concerns. But I would also ask if they understood Jasper's likely prognosis given his continued coma and his age. I wouldn't deny the possibility of a miraculous recovery, but I would stress that a long-term feeding tube could allow him to linger for months or years. Although I'd support their decision, I would also strongly urge them to consider what Jasper would have wanted.
Several months later, I ran into the nursing-home physician.
"How's Jasper doing?" I asked.
"Still the same," he said, shaking his head.
Jasper continues to subsist. And I continue to reflect, my mind and heart returning again and again to that quiet, sunlit room and to its occupant--the frail, solitary body, its soul seeming long fled.
Originally published in Pulse--voices from the heart of medicine (www.pulsemagazine.org).