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End loved one's suffering, or mine?

   There is a mother in North Carolina named Diane Arnder, whose daughter Tina has never walked, talked or fed herself. Her cerebral palsy and seizures have been so severe that she has lived in institutions since the age of 5. She is now 29, and after suffering a high fever and horrible seizures last November, she no longer recognizes or responds to anybody.

   There is a wife in Lodi, Calif., named Rose Wendland, whose husband, Robert, sits in a hospital room like a mannequin, unable to speak or eat or walk. He is 49. A car accident eight years ago damaged his brain and paralyzed his right side. He is conscious, but shows no sign that he can think or respond.

   There is a husband in Florida named Michael Schiavo, whose wife, Terri, has been in a coma since suffering a heart attack 11 years ago. She is 37. She can breathe but not swallow. Her eyes are open during the day, but her stare is vacant.

   The mother, the wife, and the husband want the feeding tubes removed from their loved ones. Death would come in one to two weeks without pain, hunger or thirst. "It's a peaceful, comfortable way to die," one doctor said.

   In all three cases, relatives or advocacy groups have challenged the guardians' right to hasten the disabled person's death. And in all three cases, different courts have handed down different rulings, so, thus far, no feeding tubes have been removed.

   As I read these stories, I wondered what I would do. I wonder how a guardian arrives at such a decision — one that many of us are likely to face within our families some day. Is there a recognizable line below which a life is no longer worth living? Do we have the right to deny a helpless human being the basics of food and water, knowing that they will die without it? How is denying food and water to these patients different from denying food and water to others who rely on us for sustenance — for example, babies, prisoners, quadriplegics, the severely retarded?

   "It's a matter of how you view the patient's prognosis," said one doctor I know who treats primarily the elderly. "If you have a patient who has no hope of recovery, who is totally demented, has had amputations, has leg sores — are we doing this patient a favor by keeping him alive?"

   The decision is less disquieting with an old person who has lived a full life, and no matter what measures the doctors take, is on a painful, degenerative path to death. As distasteful as it sounds, we can't ignore the reality of money. A large percentage of our medical dollars go to treating elderly patients in the last three to six months of life. Does it make sense to keep alive someone so deteriorated that his brain and body just barely function and he has no hope of recovery? Could that money be better spent elsewhere?

   The more wrenching decisions are those faced by the mother, the wife and the husband. Their loved ones are still young. Their organs aren't giving out. Yet their doctors agree they have no hope of getting better.

   "I love my daughter," Diane Arnder said. "The only thing I was trying to do was give her a rest."

   Said Michael Schiavo, "Has my wife no right to depart this world with some semblance of peace?"

   I wonder whether any of us can say with certainty what we would do if we were in Diane Arnder's shoes, or Michael Schiavo's or Rose Wendland's. I can't imagine the pain of seeing someone I love become an empty shell of himself. I can't imagine knowing that as I went about my daily life — when I went out to dinner or took a hike or went on vacation — that my mother, husband, son, sat mute and helpless in a sterile hospital room, alone in their impenetrable world.

   Could I ever be 100 percent certain that they no longer want to live, even in this ghostly state? How could I be sure they don't have a satisfying fantasy life inside their heads, or that they can't still hear my voice or feel my touch and derive pleasure from it?

   If I were faced with deciding whether to remove feeding and hydration tubes, I would have to answer with brutal honesty a single question: Would I be doing it to end my loved one's suffering, or my own?

  

   — Newspaper Enterprise Assn.

06/18/01