1. Cohen, Elizabeth

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Binghamton, NY-Late last November my sister and I made the decision to let my father die.


It was a cold, dry day, and I still remember the way all the fallen leaves swished through the streets in great brown piles. We drove to the hospital where he had been taken that morning by an ambulance from his nursing home with advanced double pneumonia. Neither of us spoke. We did not want to say what we both knew: that it was time.


When we got to his room we saw what I can only describe as a version of our father. As time went on and his Alzheimer's disease progressed, it seemed as if we were continuously offered new versions of him: wheelchair daddy, spoon-fed daddy, head-slumped daddy. For brief periods there were joyous exceptions to his decline. There was finger-snapping daddy, humming daddy and briefly, whistling daddy.


But those fleeting versions quickly departed and we were finally offered up the person who lay before us in the hospital bed. I think of him as absent-eyes daddy. He was there, he blinked, he coughed a bit because of the pneumonia he had contracted for the third time that year, but he did not seem actually there. It was as if he had left and somehow, in keeping with the symptoms of his disease, forgotten to take his body along.


I have thought of that daddy often the last few weeks as the press has filled with stories of Terri Schiavo, the brain-damaged Florida woman now known throughout the world for the debate raging over the legality and humanity of removing her feeding tube. This week Congress intervened, passing a law that allows her parents to challenge in federal court the removal of that feeding tube, and I could not help but imagine how violating and inappropriate it would have felt if politicians had weighed in on our decisions about daddy last November. There are a number of people I would trust to make informed and humane decisions about my father: neither the president nor any member of Congress is among them.


Although my father was 85 and Terri Schiavo is only 41, both their situations pose questions about the outermost suburbs of life. What is the meaning of a smile? How much can you read into a blink? Should there be an allowance for more extreme life-saving measures for a young woman of child-bearing age, on the chance that more advanced technology could eventually become available?


For me, it all boils down to a simple question: when does saving a life mean stealing a death? For a year we allowed our father to be treated in hospitals for pneumonias that would have probably ended his life. But what life were we saving? Not one he would have wanted. We let our own emotions cloud our decision making. Alzheimer's stole my father's mind, and it was wrong to let anything cheat him of the death he would have wanted, too.


All along we'd known the right choices; we had an excellent guide. It was our father himself. He gave us explicit directions that at a certain point we should not allow any extraordinary medical intervention. He had a living will and I was appointed his medical proxy.


Ms. Schiavo's case is more complicated; there is a morass of competing claims of family members and no living will to tell us what she wanted herself. The entire debate exists only because of the absence of a single piece of paper.


The only way for people to ensure they die with dignity, should they end up attached to any kind of technology that aids survival, is to set their own ground rules. Family members cannot always be trusted because, like me, they can be blinded by love. And elected officials, as if we didn't know already, can be blinded by politics. You have to make provisions.


As Dr James Hayes, a Binghamton geriatrician I met last year, is fond of saying, "If you are old enough to drive, you are old enough for advanced planning."


Maybe someday there will be a small space on the back of driver's licenses, below the box to check to become an organ donor, where people can delineate their wishes. Until then, it is imperative that we tell everyone we love-and maybe even a neighbor or two we do not know so well-what we want.


On my way to work I often drive by the hospital where my father died. All winter, as the snow cloaked the parking lot where I left my car so many nights, the sight never once made me sad. We finally did what he wanted: we let him die. He would have been so proud.


Elizabeth Cohen


a columnist for The Binghamton Press & Sun-Bulletin, is the author of The Family on Beartown Road: A Memoir of Love and Courage.


Copyright 2005, The New York Times. Reprinted with permission.


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Editor's Note: This editorial appeared in The New York Times on March 23, 2005, one week prior to Terri Schiavo's death. In the week since that difficult period, I have re-read this essay several times and wanted to share it with you, JHPN readers.


-Leslie H. Nicoll, PhD, MBA, RN, BC