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15 May 1998 | Volume 128 Issue 10 | Pages 869-870
Toward the end of the summer, my mother phoned urgently to tell me that my father's condition had deteriorated. She said that he had suddenly lost the power of speech and refused food and water. I took the first flight out the next morning and speeded from the airport in a rental car. When I arrived at my family's home and saw my father, I was sure that he would die soon. He was in a hospital bed in the living room. He did not respond to my voice. His breathing was rapid and his gaze opaque. I went to the kitchen where my mother sat. She looked anxiously at me. I was now the physician, no longer just the son.
"He's very sick," I said. "What do you want to do?"
"What can I do?" she said. Her eyes were tense, and the tremor that was usually confined to her left hand seemed to seize her whole body.
"We can go to the hospital."
"He hates the ambulance. The sirens scare him. Suppose we don't go?"
"He'll die today."
"So soon?" she said. Her voice was strained. My father was 86 years old and had been miserably sick for 2 years. His death had lurked every day since a fateful electromyogram had led to his diagnosis; nevertheless, its imminence took her by surprise.
"I'll take him myself in the car," I said.
"Thank you," she said, crying. "I'm not ready for him to die."
I went to the living room to get my father. Anyone who says that caring for an old person is like caring for a baby is wrong. The flesh of babies is soft and buoyant. The flesh of old people is dense and dispirited. My father had no muscles. Coarse skin covered bones that were held together by tendons that seemed frayed and rigid. I was afraid that I would pull off a limb if I lifted him wrong.
I put him over my shoulder the way I had been taught to remove hospitalized patients during a fire. I carried him part of the way to the car and stopped so that I could inspect his face. To my horror, he looked dead. In retrospect, I realize that because of the way I was carrying him, he had no venous return and I had put him into shock. I recoiled at the possibility of bringing my own father into an emergency department after he had died in the back seat of a garish red car that smelled of cigarettes.
I carried my father back to his bed and told my mother that he had said he wanted to be at home. "It's better this way. We can all be together."
During the next few hours, my sister, her husband, my niece, and my aunt all came to spend one last day with my father.
"We're all here," my mother said into my father's ear and, for a instant, I thought his head moved in recognition.
"Can he hear?" my aunt asked. My father was her baby brother. They were the last of six siblings. Because I was a physician, she presumed I had knowledge of such mysteries of consciousness.
"I think so," I said with authority.
Once we were all assembled, we sat around my father's bed, linked by his presence. The room smelled of Vaseline and the perfume of baby wipes. Dust was thick in the air. I focused on the sound of my father's breath, straining to detect any clue that would signal his course, but his breathing was regular and like a whisper.
Throughout the morning, we all remained quiet by his bedside in anticipation of the end. I looked at my watch and realized that we had already spent 2 hours in the calm of the room. My mother, who had been awake the entire night, had not yet eaten, afraid that if she left my father's side he would die without her. I wanted her to take some food, so for a moment I became a physician again and assessed my father's condition. His skin was warm. His respiration rate was thirty breaths per minute, and through a stethoscope I could hear coarse sounds from his upper airways. I listened to his heart and was amazed by its strength. The sounds were forceful, pulsing against his chest defiantly. His heart mocked the name of his illness. His heart was the real Lou Gehrig. It was the iron horse, driven to a record of consecutive days on the field.
"His heart's good," I said to my mother. "You can take a break."
"Life goes so fast," she said, distracted.
While my mother went to the backyard to eat and sit in the sun, I took her place at my father's bedside. I stayed there for almost an hour, suspended in time. His breathing was steady, almost reassuring, but when I finally looked at his face, his skin seemed more lax and his lips were mottled.
I went to get my mother. "You should go back in," I said and took her by the arm to steady her for the walk back to the sickroom.
We all came together in the living room and I announced, "It's time to say good-bye." One by one, my sister, my brother-in-law, my niece, my aunt, and I went to my father. We all cried. We all kissed him. We all said, "I love you." Because my wife and children had not made this trip, I added, "Ingrid and the kids say good-bye." For years, when I talked on the phone with my father, I would say, "Ingrid and the kids say hello," but this time the message had to change.
My mother then spoke, and with words of power and stark eloquence, she recounted their life together. I heard of joy, love, injury, regret, and a wrenching wish to stay together. "We'll meet again," she said, and her tears came again, and then she was silent.
My medical judgment was wrong. My father would not die until later that night. When I look back on that day, I think that my father rallied briefly because these were probably among the richest moments he had ever spent. His family, whom he so cherished, infused him with their love, saying things that only the deathbed would allow. These were words he would have savored throughout his life, but only in his death did he have the chance.
"This could go on all night," I said later that evening. A single lamp shone, casting a yellow-gray light on the room.
"What's the hurry?" my mother said, wistful and ironic.
I closed my eyes to the sound of the breathing as a calm descended on me and time passed without boundary. I must have fallen asleep because the next thing I can recall is my niece saying, "His breathing changed. What's wrong?"
Instantly, I awoke as I had been conditioned to do as a house officer. I looked at my watch. It was 2:00 a.m. I looked at my father. He was agonal.
Suddenly, the room became frantic with sound. I roused my mother, who had fallen asleep in a chair next to my father's bed, her hand on his.
"You'd better wake up."
"Is he dead?"
"Not yet."
"Did I miss it?"
"You didn't. He's still alive. He waited for you."
Gasp. Silence. Gasp. Silence.
Silence, and then my mother's moan, shocked, wounded, and despairing.
He was dead, and we all cried again and said good-bye once more, this time to a body whose flesh had stiffened and whose mouth now gaped.
At 6:00 a.m., two men from the funeral home removed my father's body. One had hair that was thick with pomade. The other stuttered and wore a Red Dog T-shirt visible under a white shirt of thin polyester. They wrapped my father in a sheet and drove him away in the back of an Oldsmobile station wagon. It was over.
Among the many feelings of that day that commingle in my mind-grief, sadness, guilt, longing, relief-there is also a surge of pride and even exhilaration. My family did not abandon my father at the time of his death. We did not cast him from his home and surrender him to the hospital and its fearsome machines. We kept him where he wanted to be, in a room where we had watched Ed Sullivan and Marshal Dillon, where we had celebrated graduations, marriages, and births. And just as death put my father under a spell that day, my family put death under its own spell.
Soon I will have to discuss end-of-life issues with the family of a patient who is old, near death, and defeated by illness. I will sit in a dreary alcove with pastel walls and plastic furniture. I will explain the meaning of cardiopulmonary resuscitation, intubation, cardioversion, and all of the options that are available when the heart stops, as if issues of such complexity can be distilled into a few sentences of approachable dimensions.
"What are the wishes of the family?" I will ask, as they look back and forth at each other to determine who will speak. And if anyone says, "Doctor, we want you to do everything," I know what I would like to say.
I would like to say, "Family, only you can do everything. Only you can talk of your love and give kisses before the skin is cold. Only you can talk of the future and of dreams to be fulfilled. Only you can talk of the past when life was resplendent because time seemed infinite.
"Family, only you can oppose the flow of time and enjoy one last day together. Only you can give peace and sustenance for the next journey. Family, only you can do everything. I am only a physician. I can do nothing at all."
ON BEING A PATIENT
Doing Everything
I never knew what death was like until I watched my father die. He had Lou Gehrig's disease. I learned about the meanness of this condition only as I saw what it did to him. Until he developed amyotrophic lateral sclerosis at 84 years of age, my father worked full time as a physician and was a robust man with a large belly and an exuberant smile. After he got sick, he became immobile, despondent, and dependent on others. He had difficulty swallowing and, terrified of choking, restricted his diet to soft foods. He lost 100 pounds.
Author and Article Information
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Author & Article Info
Durham Veterans Affairs Medical Center; Durham, NC 27707
Requests for Reprints: David S. Pisetsky, MD, PhD, Durham Veterans Affairs Medical Center, Box 151G, Room E-1008, 508 Fulton Street, Durham, NC 27705.
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