My mother, at age 62, suffered the same fate as Terri Schiavo.
While watching a movie with the first-graders she taught, she appeared to nod off. Her aide, sitting next to her, thought she was catching a postlunch nap, but a minute later my mother slid out of her chair onto the floor. Her heart had stopped beating. Paramedics arrived and whisked her to a nearby hospital, where doctors shocked her heart back to life, but at least 15 minutes had passed since she collapsed, and large portions of her brain had died.
When I arrived at the emergency room, I expected to find my mother sleeping peacefully. Instead, I was led to a bloated, beet-red figure twitching convulsively in a hospital bed, her arms contracted tightly against her chest, fists twisted as though they had swiveled 180 degrees on her wrists. Her brain, like a dying star, seemed to be releasing a great burst of energy before burning out forever.
A doctor explained that my mother displayed no brain activity and would almost certainly die unless he administered steroids to reduce the swelling inside her head. Then she might survive, but in a persistent vegetative state. The most merciful thing we could do, he advised, would be to remove the respirator and let her die peacefully.
I froze in horror. I did not want my mother to survive without consciousness, but I did not want the responsibility of agreeing to an act that would end her life, so I remained silent as my father said, "Do whatever you can, doctor."
They kept her alive with a respirator and a feeding tube. After a few weeks my mother emerged from her coma. The nurses gradually weaned her from the respirator and removed the feeding tube so she could take food orally. My father fought to have her admitted to a rehabilitation hospital, but she never responded to therapy.
Through all this, my mother displayed the full spectrum of human emotion. She would weep and scream and emit blood-curdling curses that horrified other patients. Occasionally she would laugh, and sometimes, for a fleeting instant, her eyes seemed to recognize me or my father or my sister.
Despite all this, her actions seemed hollow to me _ mere reflexes that mimicked human consciousness but represented nothing more than random discharges from her badly damaged brain. My worst fear was that she might actually have lucid moments in which she recognized what had happened to her. That certainly would explain the tears, the screams and the curses.
My mother lived for almost 16 more years and, while I fervently hoped for her death, I would have opposed any effort to hasten her demise. My father visited her daily, always bringing a banana or some other treat to feed her, and somehow he managed to pay for her care in a nursing home. When a lawyer friend pointed out that the state would pick up the tab if he divorced her, my father was appalled by the suggestion.
He did, however, go to a lawyer and draw up a living will for himself, and he made sure I knew where it was. "I would never want to linger like that," he said many times. "When it's time to go, I want to go."
After my mother died, my father started having memory problems. As he slipped into Alzheimer's disease, he came to live with my family for two years. When caring for him became overwhelming, we found a place for him in a nearby nursing home, where he promptly stopped eating. Perhaps he was depressed, or perhaps, like many people in the final stages of Alzheimer's, he had forgotten how to swallow and was instinctively afraid of choking on food. At any rate, the doctor eventually posed the inevitable question: feeding tube or no feeding tube?
"No feeding tube," I replied without hesitation. While I recoiled from the notion of letting my mother die, I did not hesitate to withhold food from my father. I'm not sure I could have issued that order, however, if my father hadn't made his wishes known so clearly and adamantly. I knew he didn't want to linger; I knew he fervently wanted to go when his time came.
I watched him grow thinner, but he never seemed to be in distress. On the contrary, as he grew weaker the agitation and anger that had consumed him as his disease progressed yielded to a blessed serenity until he slipped away early one morning.
When I got the death certificate I was shocked to see the cause of death listed as "extreme malnutrition" _ he had starved to death. That sounded horrible, but I knew it wasn't as horrible as the alternative would have been. To have agreed to a feeding tube would have been selfish and cowardly on my part, a betrayal of his wishes.
There can be no absolute guidelines when it comes to end-of-life care. Deciding when to withhold treatment is situational ethics with a vengeance because the "right" thing to do, the "moral" thing to do, depends on the person and the context. That is what is so painful about the Schiavo case _ the woman's husband and her parents have opposing opinions on what to do. Neither one is absolutely right nor absolutely wrong. I sympathize with Michael Schiavo's belief that keeping his wife alive is a selfish act, but Bob and Mary Schindler, the woman's parents, remind me of my father. He needed time to accept that my mother would never recover and, even after he accepted that brutal fact, he still got something out of caring for her and talking to her every day.
Withholding food from Terri Schiavo would be a rational and merciful act. She would not suffer, and the death of her body would merely follow, belatedly, the death of her mind.
But who am I to advocate such action when I lacked the courage to let my mother slip away peacefully?
At the same time I am proud that I could withhold a feeding tube from my father and save him from several more months of dementia. Why? What was so different about his case? Sure, he made his wishes clear to me, and that helped, but was his explicit approval really necessary? I cannot believe my mother would have wished to survive the destruction of her brain. I cannot believe anyone would want that.
The Florida Legislature developed sensible guidelines for such situations, and then, when faced with the reality of letting a badly brain-damaged woman die, the lawmakers reversed themselves and gave the governor authority to order her feeding tube returned. That seems reprehensible to me. Then I remember that when I had the opportunity to advocate pulling the plug on someone, I couldn't do it either.
Tom Valeo writes the Body of Information column for the Seniority section.