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'My Father Wasn't There'

October 26, 2003
 By DUDLEY CLENDINEN  

TERRI SCHIAVO'S eyes are often open, and, in photographs,
seem clear. She smiles. When her parents, Bob and Mary
Schindler, look at her face, they think she is still there.
That is how we try to measure people. The stranger we
encounter. The salesman. The actor on the movie screen. The
boyfriend. The wife or husband. The child - especially if
it is our child. Especially if the child is hurt, and we
think we can help.

We look into their eyes, because we expect to find truth
there, information - or at least some indication that they
know we are with them, trying to know what they are
experiencing. What they need. What we can do.

Sometimes the eyes tell us. When my father opened his eyes,
three days after a massive cerebral hemorrhage, they
weren't clear and hazel as usual, but wild and black. It
was like looking into a storm at night, or a destroyed
brain. My father wasn't there. We asked the hospital to
disconnect his hydration and feeding tubes. As I've come to
learn, a person can live for a month or more without food,
but only 8 to 14 days without water. Nine days later, still
in a coma, he died.

Sometimes the eyes deceive us. I saw the same wild black
emptiness in my mother's eyes, 36 hours after the same kind
of stroke. She was in a coma, too. Experience told me she
was gone. We were about to disconnect her when she woke up,
going, in minutes, from comatose to a critic of the
hospital room décor.

"That picture really is dreadful," she said, pointing. "I'd
like it taken down."

She was back. Then seven days later, she had another
stroke, a clot. That was five and a half years ago. She can
eat when fed, but now she says nothing, smiles less than
Terri Schiavo and just looks at me with clear eyes.

The victims of strokes can be terrible puzzles, a torture
to families, and sometimes an ordeal for the courts. Ms.
Schiavo, 39, is not in a coma. Since her heart stopped in
1990, depriving her brain of oxygen, she has been in
something slightly less severe, a persistent vegetative
state.

"There may be facial expressions," said Michael A.
Williams, a neurologist at the Johns Hopkins medical
school. "If something hurts, they may grimace. They may
cry. And they look for all the world as if they are looking
right at you."

It is all involuntary, he said, and can occur even if the
thinking, experiencing part of brain has been destroyed.
"It makes it much harder" to accept that the patient is not
responding, he said.

Michael Schiavo, who married Terri, has said that he used
to hope for her recovery, but years ago accepted that his
wife, whom he said once told him she would never want to be
maintained in such a state, wasn't there anymore - and
should be allowed to die. But the Schindlers, who raised
her, see the promise of recovery when they look at her. For
five years, Mr. Schiavo, her court-appointed guardian, has
sought to disconnect her tubes, fought every step of the
way by his in-laws.

It is understandable. One person who loves her could wish
to let her die. Another who loves her could desperately
want to keep her alive. That is what the courts are for,
and since the decision of the New Jersey Supreme Court in
the case of Karen Ann Quinlan 25years ago, a body of law
has developed consolidating the right to die. Mr. Schiavo
finally won an order to have her tubes removed on Oct. 15.
But by then, fired by the appeals of her parents, public
prayer vigils, demonstrations and a global e-mail campaign,
his wife's case had acquired the kind of political head of
steam associated with fights over abortion.

Last Tuesday, after one day of debate, dramatized by videos
of Terri Schiavo's smiles and open eyes, the
Republican-controlled Florida Legislature passed a law
allowing Gov. Jeb Bush, a Republican, to order her tubes
returned. He did. She was about half-way to death when
nourishment was restored.

The action is said to appeal to the Republicans'
conservative Christian base. But the voters most affected
by this issue are those most prone to stroke - those over
65, and particularly over 75, a huge population in Florida.
They're not all happy with their Legislature and governor,
and some of them are consulting their children and lawyers.

"I think it's perfectly dreadful," said Lucile Foster, 78,
who lives in an apartment at Canterbury Tower, a residence
for the elderly in Tampa. "I'm a born-again Christian. I
know where I'm going when I die. And I have already called
my oldest son and said I just want to be sure that you'll
pull the plug on me if I get like that."

Her son told her not to worry. She has a living will, and
he knows how she feels. But when a friend of hers read
about the Schiavo case and decided to check with her two
daughters, one said, "Mother, I would never pull the plug
on you."

"Don't worry, Mother," the other daughter said. "I would."

"She gave her power of attorney to that daughter," Mrs.
Foster said.

When people are young, it is hard to take mortality
seriously. At the Johns Hopkins medical school in a
classroom filled with more than 80 students and faculty
members last week, a speaker asked how many had living
wills. Not one student raised a hand. But many of the
faculty did. The Schiavo case may make them wonder if they
can count on the established case law. It was the Nancy
Beth Cruzan case in Missouri, in 1990, that began to
establish the right of family or friends to speak for the
wishes of those who hadn't signed living wills. At the
medical school at the University of South Florida, Lois
LaCivita Nixon an ethics and humanities professor, expects
her first-year students, aged 22 and 23, to be the first
medical school class in the country to sign living wills.

That is young, but Karen Ann Quinlan, whose case opened
this subject, was only 21 when she fell into a coma. Nancy
Beth Cruzan was 33 when she died. They were both, like Ms.
Schiavo, in permanent vegetative states. Politicians, if
not the courts, forget that we've been through this before,
and that otherwise healthy young people can live a very
long time on feeding tubes.

Terri Schiavo has already lived a third of her life on
tubes. If she can avoid bedsores and infections, "I don't
think anyone can put a limit on how long she can live,"
said Robert Walker, director of the division of medical
ethics and humanities at the University of South Florida
College of Medicine.

The law passed by the Florida Legislature, and Governor
Bush's order, do not seem likely to stand in court. But if
they do, or if Michael Schiavo decides to relinquish
guardianship, Bob and Mary Schindler could very well have
their daughter for the rest of their lives.

As Mrs. Foster said, "You need to be careful what you pray
for."

Dudley Clendinen, a former national correspondent and
editorial writer for The New York Times, is at work on a
book about life in the new old age.

http://www.nytimes.com/2003/10/26/weekinreview/26CLEN.html?ex=1068186788&ei=1&en=24767f279d9c4c35