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Guardian appointed in Schiavo case haunted by `what ifs?'

TAMPA, Fla.—Two dark scenarios haunt Jay Wolfson even now, a year and a half after his brief appointment to be a neutral arbiter, a guardian, an unbiased observer, the one man asked by the state of Florida to stand in Terri Schiavo's shoes.

One is that the severely brain-damaged woman is in a terrible lightless place, aware of nothing but a yawning, endless hopelessness.

The other is that even though he never elicited a response from her, despite all the pleading and cajoling he did at her bedside, that he might have missed some subtle, nearly invisible signs that she was somewhere in there, aware.

"Imagine not having hope and being aware that's all you had was no hope. The horror. It's like not being, but knowing that you're not," said Wolfson recently in his Tampa-area office. "That's one thing. The other is, what if she's knocking on a door somewhere and I was walking through all the wrong corridors and I missed it. What if?"

Wolfson was appointed by a Florida court in the fall of 2003 to be Schiavo's guardian ad litem, or guardian at law, to deduce Schiavo's best interests and represent neither her husband nor her parents but Terri Schiavo herself.

This makes Wolfson one of the very few people to have spent extended time with Schiavo and gauged her level of awareness without having a vested interest at stake.

In the end, after long hours at Schiavo's bedside and after poring over 30,000 pages of legal documents, Wolfson concluded that Schiavo was indeed in a permanent vegetative state.

It wasn't the conclusion he'd hoped to make.

"You want to weigh in on life as opposed to death," Wolfson said. "You want some way to elicit a response."

Wolfson was appointed Schiavo's guardian after the Florida Legislature passed "Terri's Law" in 2003, a move that allowed doctors to reinsert her feeding tube, despite a judge's ruling that it should be removed. The law has since been struck down as unconstitutional.

Wolfson, who has a law degree and a PhD and is a distinguished service professor of public health and medicine at the University of South Florida, was asked to decide whether Schiavo's feeding tube should be removed and whether more tests should be done to assess her ability to swallow.

He scoured 13 years' worth of legal documents and extensively interviewed Schiavo's husband, Michael, and her parents, Bob and Mary Schindler. His time with Schiavo was spent trying to determine whether she was aware of and interactive with the world.

At first, walking into Schiavo's room, he was struck by her presence, even though he knew in advance that she drifted between wakefulness and sleep.

"She's a person, like you or I, and the first disconcerting part is that she's awake," said Wolfson.

When awake, Schiavo's eyes rolled about the room. She made random noises that sounded like groaning or the start of a laugh or cry.

But court documents said Schiavo's cerebral cortex, where reason and emotions are housed, had degenerated to fluid. So Wolfson set about trying to determine whether Schiavo's noises and jerks were merely reflexive or if they indicated something more.

He played Elton John CDs for her, and Bach and Mozart and music from the late 1980s, when she was in her 20s, prior to her collapse. He held her hands, squeezing them, and stroked her hair and face.

He put his face close to hers and tried to make eye contact, pleading desperately, trying to will her into giving him any kind of sign.

"I would beg her, `Please, Terri, help me,'" he said. "You want to believe there's some connection. You hope she's going to sit up and bed and say, `Hey, I'm really here, but don't tell anybody.' Or, `I'm really here, tell everybody!'"

But Schiavo never made eye contact. When Wolfson visited her when her parents were there, she never made eye contact with them either, he said. And for all of Wolfson's pleadings and coaxing, he never got what he most wanted: a sign.

"I felt like there was something distinctive about whoever Terri is," said Wolfson. "But I was not clear that it was there, inside the vessel."

Wolfson was dismayed to learn Friday that Barbara Weller, an attorney for the Schindlers, claimed that Schiavo tried to speak. "Terri does not speak," he said. "To claim otherwise reduces her to a fiction."

One thing Wolfson never doubted was that for all their intense, mutual antagonism, both Michael Schiavo and Terri's parents love and adore her.

She was cared for incredibly well, Wolfson said. Her hair was always combed, and after 15 years of being incapacitated, she never developed a bedsore. In fact, Wolfson said until about seven years ago, Michael Schiavo had Terry's makeup and hair done regularly, and her clothes changed every day—to the point that hospice staff protested that he was being overly demanding about her care.

Also, Wolfson concluded, Schiavo would never have tolerated the enormous, "omnipresent" acrimony between her husband and parents.

In the 38-page report he wrote afterwards, Wolfson said the best decision for Schiavo could be made only if both sides agreed to fresh, independent medical testing. If the new testing showed she couldn't swallow on her own and that Schiavo had no hope for improvement, then the feeding tube should be pulled.

Both parties were on the verge of agreeing to these new conditions, Wolfson said, but once the Florida Supreme Court struck down Terri's Law his efforts were moot.

Wolfson still refuses to give his personal opinion on whether Terri's feeding tube should or should not have been pulled.

But he will say, as a parent of three sons, that after doing everything one can, sometimes the time comes to let go.

"When it evolves beyond that person into issues that are other people's issues or are broader issues, it becomes less objectifiable," said Wolfson. "It's hard to be objective anyway. This is the kind of thing you don't wish on anybody."

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(c) 2005, Knight Ridder/Tribune Information Services.

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