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
family divided. Ms. Schiavo's husband believes she
hope of recovery and chose to remove the feeding tube
keeps her alive. Her parents disagreed. Last week,
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
families people choose versus those they are born
the question of who has the more valid claim to
destiny. Society's fears and suspicions collect
stereotypes in play: a disloyal husband,
"The case has been mischaracterized
as the case of a woman
who is disabled being starved to death," said Dr.
Sulmasy, a Franciscan friar, medical doctor and the
chairman of the ethics committee at St. Vincent's
in Manhattan. "But the real moral issue is these sort
thorny disagreements that occur in the settings of
Dr. Sulmasy, who regularly consults
with relatives making
life-or-death decisions within complicated family
relationships, said it is easy for an ethicist to
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
beginning?" he asked. "Or did he rescue her from a
that was always smothering and they now feel that
to continue to care for her the way they always
Overwhelmingly, state laws and courts
have granted the
spouse the first right to make life-or-death
Next come the children, and then the parents. In a
focused on nuclear families, this reflects the view
spouses are far better equipped to make proxy
because they share responsibilities and have known
other intimately in their adult lives, rather than in
Parents, on the other hand, must
contend with generational
asymmetry, the idea that caring flows down the family
more strongly than it climbs up.
While children may nurse a permanent
their parents, said Janna Malamud Smith, a clinical
worker and the author of "A Potent Spell: Mother Love
the Power of Fear," parents want nothing more than to
their children outlive them.
"Whatever your gratitude and deep
love for a parent who
raised you, you don't have this ongoing mandate for
creature that `no matter what, I will protect you,' "
In any case, the idea that the spouse
knows best does not
prove to be uniformly true. In a study that Dr.
calls "the bioethics version of `The Newlywed Game,'
health care questions were posed to people and their
proxies to compare their answers. Faced with
like whether to turn off a ventilator or withdraw a
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
person explicitly told the proxy what he or she would
Ms. Schiavo may or may not have done
that; her husband,
Michael, has said that she had expressed a desire not
kept on life support.
But even if she had not, the Florida
stripped Mr. Schiavo of his right to make choices for
wife for the time being. The marital intimacy that is
normally inviolable even by parents or children, not
mention politicians or those whose stated aim is to
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
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
prerogatives. "Maybe in this post-Laci Peterson
people are more skeptical of spouses and their
said Herbert E. Nass, a probate lawyer and the author
"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:
Polemic." "There's a sort of undercurrent of mistrust
suspicion underlying the state of marriage these
said, "the idea that a spouse may leave you or try to
murder you or having a secret life with someone
Mr. Schiavo is now living with
another woman; they have a
child and are expecting another. Ms. Schiavo's
and Mary Schindler, point out that Mr. Schiavo won a
million-dollar malpractice judgment to pay for his
care, which he would inherit if she died. Mr.
lawyer argues that it has been 10 years since that
settlement. And with a wife in a "vegetative state"
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;
say she suffered a heart attack caused by a potassium
deficiency. The Schindlers say that their daughter
them she wanted a divorce and that Mr. Schiavo has
her medical treatment that might help her. And, they
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
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
Lynch, a funeral director and author of two books of
on themes of life and death. "It should have been an
intimate conversation, not a big conversation. It
have been an intimate decision, not a public
The struggle over the feeding tube is
so compelling because
it is so easy to agonize with both the parents and
husband. And, for that matter, with Ms. Schiavo
the mercy of people for whom there is no obvious
Reflecting on the case, Cathleen
Schine, a novelist whose
most recent book, "She Is Me," presents three
of women from one family, offered her best answer:
"Because otherwise," she said,
"everybody's got their own
version of you and what you would want."