It May Be a Family Matter, but Just Try to Define Family

October 26, 2003

 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

"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

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

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

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

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."