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End-of-Life Choices Should Be Our Own

By Courtland Milloy
Wednesday, March 23, 2005; Page B01

Just as I have become reasonably comfortable with this thing called life, I find myself preparing to die. Not because of old age -- I'm a fiftysomething baby boomer -- and not because of illness, although life itself is certainly a terminal condition.

It's because of Terri Schiavo, the Florida woman whose family has been torn apart by guessing whether she would want to stay on or be disconnected from a feeding tube that has allowed her to exist in a vegetative state for 15 years. If there is any lesson to be learned from this sad public spectacle, it is that death with dignity requires privacy and planning.

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In the past, whenever my wife tried to tell me where to find the "important papers" in case she died, I'd hem and haw, not in the mood for morbid talk. When asked whether I wanted to be buried or cremated, I shrugged; it didn't matter, I said, because I'd be dead.

But as the Schiavo case has shown, a lack of frank talk before a crisis can result in pain so great for family members that death looks good by comparison.

For advice on how to overcome my aversion to such discussion, I sought out Carlos Gomez, who teaches bioethics to medical students at Georgetown University and serves as associate director of the Institute for Education and Leadership at Capital Hospice in Fairfax County.

"The first thing to know is that we're not talking about death; we're talking about life," he said. "How do you want to live? I tell patients that I can't do a thing about death. It is what it is, and when your time comes it's going to come. What I can affect is what happens in that space between getting very ill and dying. So what do you want? What is the legacy you want to leave behind? What are your values?"

Put that way, the answers came easily. I want to face death bravely -- which means I don't want to endure a lot of pain. And I want to do right by my family -- by not using up all the money on machines that make dead people appear to be breathing.

I still had no clue what instructions to give, in advance, about when to disconnect, say, a feeding tube.

"I can tell you how a feeding tube works and what happens when one is removed, but if you want absolute certainty, get into a field other than medicine," Gomez said. "The best thing to do is have a physician you know and trust help you establish some parameters. You could say, 'I don't want to be on a ventilator for three months; that would be too much financial hardship on my family. If I'm improving, however, you may keep me on. But I trust that you and my spouse will make that decision together.' "

At some hospitals and nursing homes, patients and residents make their "last wishes" known by filling out forms called advance directives. Although you might expect the elderly to be more accepting of death than other people, some take months to turn in the forms, if they do at all.

"Advance directives make you cognizant of your own feelings about death and dying, and I see people wrestle with those feelings all the time," said Brenda Fisher, head of social services at the Washington Center for Aging Services, a nursing home in the District. "People are thinking that they are going to live at least into their seventies. But then they realize that is not guaranteed. Tomorrow is not promised."

Gomez put it this way: "One of our problems as Americans is that we treat death as if it's an option instead of a reality. We tend to believe that technology can conquer everything. But no matter how healthy you are or how much medical care you get, you're still a mortal."

The policy at Capital Hospice, as with most hospices, is not to hasten death or prolong the dying process. An effort is made to honor the wishes of patients and their families, and to do so with dignity.

That sounds much better than having Congress and the president treat me as if I were just another couch potato and they were doing me a favor by trying to extend my life as a vegetable.

E-mail: milloyc@washpost.com

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