It May Be a Family Matter, but Just
Try to Define Family
October 26, 2003
By SHAILA K. DEWAN
The life of Terri Schiavo, however
narrowly it has been
lived in the 13 years since a heart attack left her
severely brain-damaged at 26, is at its core a story
of a
family divided. Ms. Schiavo's husband believes she
has no
hope of recovery and chose to remove the feeding tube
that
keeps her alive. Her parents disagreed. Last week,
the
Florida Legislature gave Gov. Jeb Bush the power to
intervene; he ordered the tube replaced.
While the courts have been the main
battleground, the case
is fundamentally one of emotional, rather than legal,
combat. It concerns the lengths to which love will
go, the
families people choose versus those they are born
into and
the question of who has the more valid claim to
someone's
destiny. Society's fears and suspicions collect
around the
stereotypes in play: a disloyal husband,
overprotective
parents.
"The case has been mischaracterized
as the case of a woman
who is disabled being starved to death," said Dr.
Daniel
Sulmasy, a Franciscan friar, medical doctor and the
chairman of the ethics committee at St. Vincent's
Hospital
in Manhattan. "But the real moral issue is these sort
of
thorny disagreements that occur in the settings of
real
families."
Dr. Sulmasy, who regularly consults
with relatives making
life-or-death decisions within complicated family
relationships, said it is easy for an ethicist to
forget
that people drag the flotsam of the past behind them.
"Is what's going on here just a
history of suspicion that
these in-laws have had against their son-in-law from
the
beginning?" he asked. "Or did he rescue her from a
family
that was always smothering and they now feel that
they have
to continue to care for her the way they always
have?"
Overwhelmingly, state laws and courts
have granted the
spouse the first right to make life-or-death
decisions.
Next come the children, and then the parents. In a
system
focused on nuclear families, this reflects the view
that
spouses are far better equipped to make proxy
decisions
because they share responsibilities and have known
each
other intimately in their adult lives, rather than in
childhood.
Parents, on the other hand, must
contend with generational
asymmetry, the idea that caring flows down the family
tree
more strongly than it climbs up.
While children may nurse a permanent
ambivalence toward
their parents, said Janna Malamud Smith, a clinical
social
worker and the author of "A Potent Spell: Mother Love
and
the Power of Fear," parents want nothing more than to
have
their children outlive them.
"Whatever your gratitude and deep
love for a parent who
raised you, you don't have this ongoing mandate for
this
creature that `no matter what, I will protect you,' "
Ms.
Smith said.
In any case, the idea that the spouse
knows best does not
prove to be uniformly true. In a study that Dr.
Sulmasy
calls "the bioethics version of `The Newlywed Game,'
"
health care questions were posed to people and their
proxies to compare their answers. Faced with
situations
like whether to turn off a ventilator or withdraw a
feeding
tube, they did not agree 20 percent of the time.
It did not make a difference whether
the proxy was related
by blood, Dr. Sulmasy said. The best results came
when the
person explicitly told the proxy what he or she would
want
beforehand.
Ms. Schiavo may or may not have done
that; her husband,
Michael, has said that she had expressed a desire not
to be
kept on life support.
But even if she had not, the Florida
Legislature has
stripped Mr. Schiavo of his right to make choices for
his
wife for the time being. The marital intimacy that is
normally inviolable even by parents or children, not
to
mention politicians or those whose stated aim is to
protect
family values, has been breached.
"In a sense that movement rests on a
sentimental version of
family - that whether or not blood is thicker than
water,
blood is somehow better," Ms. Smith said.
It is difficult for estate lawyers to
think of a time when
so much effort has been put into overriding a
spouse's
prerogatives. "Maybe in this post-Laci Peterson
world,
people are more skeptical of spouses and their
motives,"
said Herbert E. Nass, a probate lawyer and the author
of
"Wills of the Rich and Famous."
The very idea of pulling the plug
conjures up a lurking
fear, said Laura Kipnis, the author of "Against Love:
A
Polemic." "There's a sort of undercurrent of mistrust
and
suspicion underlying the state of marriage these
days," she
said, "the idea that a spouse may leave you or try to
murder you or having a secret life with someone
else."
Mr. Schiavo is now living with
another woman; they have a
child and are expecting another. Ms. Schiavo's
parents, Bob
and Mary Schindler, point out that Mr. Schiavo won a
million-dollar malpractice judgment to pay for his
wife's
care, which he would inherit if she died. Mr.
Schiavo's
lawyer argues that it has been 10 years since that
settlement. And with a wife in a "vegetative state"
for 13
years, doesn't a husband - or anyone, for that matter
-
have the right to walk away?
The Schindlers accuse Mr. Schiavo of
having abused their
daughter, and even of possibly causing her injury;
doctors
say she suffered a heart attack caused by a potassium
deficiency. The Schindlers say that their daughter
had told
them she wanted a divorce and that Mr. Schiavo has
denied
her medical treatment that might help her. And, they
claim,
their daughter smiles and responds to their presence.
In the end, what is missing is not so
much consensus as any
sense of trust that both parties - the chosen
companion and
the birth family - want what is best for Ms. Schiavo.
"The people who oughtn't to be
involved are the barbers and
bankers and real estate agents that make up the
Legislature, and the governor of Florida," said
Thomas
Lynch, a funeral director and author of two books of
essays
on themes of life and death. "It should have been an
intimate conversation, not a big conversation. It
should
have been an intimate decision, not a public
decision."
The struggle over the feeding tube is
so compelling because
it is so easy to agonize with both the parents and
the
husband. And, for that matter, with Ms. Schiavo
herself, at
the mercy of people for whom there is no obvious
right
choice.
Reflecting on the case, Cathleen
Schine, a novelist whose
most recent book, "She Is Me," presents three
generations
of women from one family, offered her best answer:
get a
living will.
"Because otherwise," she said,
"everybody's got their own
version of you and what you would want."
http://www.nytimes.com/2003/10/26/weekinreview/26DEWA.html?ex=1068186752&ei=1&en=30c9392c1fbe16ac
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