How long should someone, unable to live on her own, be kept alive?
How long should someone, unable to live on her own, be kept alive? What constitutes being alive? What constitutes being dead? There is no clear answer to any of those questions, no matter what the courts and Congress may say.
Helen could not move because her head was pinned to a metal “halo” from which fifteen pounds of weight hung. This was to relieve pressure on her spinal column from vertebrae that had collapsed, constricting her spinal cord and making her a quadriplegic at age 86.
It happened suddenly but had been building for years. Because of osteoporosis and arthritis, two cervical vertebrae that were supposed to protect her spinal cord gave up. Instead of lining up, two of them had slipped nearly side by side, so the spinal cord had to make an ‘S’ turn. And the hole that the cord goes through had narrowed with calcification so it was pinching the cord as well. This one-two punch landed the Friday of Columbus Day weekend a year ago. She was dusting the basement stairs from bottom to top. She bent over, the weight of her head was too much. She felt weakness in her legs and slipped to the floor. Twelve hours later, she was on a ventilator.
For the last few years Wendy called every day because Helen insisted on living alone. Keeping house was what kept her going. It was her strength and stay. If you opened her Bible it would read, “And on the second day, God said, ‘Let there be laundry;’ and God separated the lights from the darks.” She was doing her godly duty as she went up the stairs that afternoon.
Every evening there was a moment of uncertainty as the phone rang, and a moment of relief when Helen answered. On that Friday, there was no answer.
Old people are supposed to die of strokes, heart attacks, or pneumonia, not of sudden quadriplegia. But that’s what it says on her death certificate. By the time Wendy arrived, Helen was splayed out like a specimen, the might of medical knowledge arrayed around her. A ventilator breathed for her, a monitor measured her heart rate, blood pressure, and oxygenation. Liquids went in one arm. Drugs went in another. A foley catheter captured urine in a bag at the foot of the bed.
Complex and imposing though it appeared, nothing was actually happening. Which was exactly the purpose. We humans can now literally stop death in its tracks. Fifty years ago, Helen would have died on the floor. Twenty-five years ago she would have died in the emergency room.
Now, she could not die until we let her. That is what technology can do. But neither could she move, speak, or eat. That is what nature can do. It was as if technology and nature were in a battle of wills. We sat in her hospital room, waiting for a change. Monitors beeped, ventilators whispered, the air conditioning blew, but that’s all that was happening. Wendy spoke when her mother’s eyes were open, but what to say? Helen couldn’t reply. Could we talk about it? Could we talk about anything else? What did she want to say, or hear?
As tense and urgent as it was, we felt a weird calm. Wendy and I remembered how it felt fifteen years before when own premature infant son lay in a neonatal intensive care unit, and how the hours there were an island of fierce clarity. Fifteen years later, quadriplegia, medical prowess and emotional complexity circled each other like a Calder mobile, balancing perfectly, moving but going nowhere. Everyone wanted something to change but no one wanted to make that change.
Overnight Tuesday, Helen actually improved slightly. The diagnosis and prognosis stayed the same, but they could modify her ventilator so that she could form words silently around the ventilator tube. “I want to go,” she said silently. Her daughter asked aloud, “Did you say ‘I want to go’?” One blink meant yes. She blinked. “Do you mean you want to stop treatment?” Another blink. “Do you mean you wish to stop treatment even if it ends your life?” Another blink.
We have to wait until she says it all again for the doctor. Not until everyone “hears” it from her can anything happen. So it is late Wednesday afternoon when the chaplain offers a prayer. Helen smiles as the nurses drug her to sleep and then remove most of the equipment.
She breathes on her own, but not easily. An hour passes. Her vital signs are weak but steady. Another hour goes by. Her blood pressure drops a little, but heart and lungs and oxygenation are still steady. The shift changes. Evening comes. She is still steady.
“Go home,” the night nurse says. “We’ll call if something changes.” We go home to Helen’s house about four miles away, glad for the permission to leave. We take the phone to bed, expecting to be interrupted.
We are not. She is still holding steady according to the morning report. We leave for the hospital around ten a.m. She has been in her drug-induced sleep for fifteen hours. Her lungs and heart are still holding on; her blood pressure has dropped a little further.
Noon comes, and her blood pressure drops again. “It won’t be long now,” says the day nurse. Sometime after 2:00 her breathing slips to four times a minute, her blood pressure goes down to forties over thirties, and the oxygenation slips below 80 percent. At 4:00, her breathing is once or twice a minute, rough belly gasps, “agonal” is the medical term, meaning struggled.
At 4:45 she stops breathing. Her heart is still beating, with the familiar EKG shape on the monitor. Her blood pressure still registers, although low. At 5:00, her blood pressure vanishes. Her heart is still going but the shape of the pattern changes. Blood oxygenation no longer registers.
At 5:14 the heart fibrillates, a ragged sine wave, and then recovers. At 5:15 the heart stops.
At 5:16 it resumes but with a new shape on the monitor, at twenty beats per minute. An intern comes in to usher Helen out of existence, pronouncing her death at 17:15. Her heart is beating as she pronounces her.
But when did she die? To the eye it was 4:45 when she stopped breathing. To the doctor it was when her heart stopped for that minute. To the monitor, she was not yet dead. Somewhere between 4:45 when she stopped breathing and 5:15 when her heart briefly stopped, her brain stopped, at least the part that we believe contains our sense of self and consciousness. But some of it still lives to keep the heart limping along.
So where does living stop and death begin? I don't know. The lines we draw are supposed to be biological, but biology is not that neat. Death, it turns out, is really sociology, defining who we are to others. But was she dead inside? Her heart was still moving for an hour after her formal death. What else was still going on? Billions of cells don't all quit at once. Was it minutes, hours, even days before the last of them died? I don't know.
We come into life slowly and leave it slowly. There is no crisp line to mark life and death. Whatever we say is as arbitrary as a border crossing, a line agreed to by humans, where one thing ends and another begins, but invisible to the birds that swoop and perch and never show a passport.
Standing by her bedside, we touched her cold hands and realized that the distance between her and us was vanishingly small. Out in the hallway the soft scuffle of slippered nurses obscured the sound of chatter and television sets. For them, the border was clear and distant. But we knew it wasn't. Death is embedded in life, in the cell and the mind, in the catch in every breath and the tiny flat line between every heartbeat.
Our true companions at that moment were not those close-by, but outside the window: the trees in their varying states of October beauty that is the harvest of countless leafy deaths, and the geese who plow through the seamless sky.
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The Rev. Dr. W. Frederick Wooden, senior minister of the Fountain Street Church in Grand Rapids, Michigan, previously served the First Unitarian Congregational Society in Brooklyn, New York, was an editor and contributor to Singing the Living Tradition, and served on the UUA Commission on Appraisal.
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