| This is different than
a coma, in which a person appears to be asleep constantly,
or brain death, in which there is no sign of activity
in the brain whatsoever, and in many ways it is more
painful, since the reflexes of the brain stem continue
to function.Terri’s eyes close when she is asleep
and open when she is awake, although her wakeful state
is nothing like full consciousness. If her eyes are
touched, she blinks, and if something obstructs her
air passages, she coughs. But her cerebral cortex
is essentially gone, replaced with cerebro-spinal
fluid. Sometimes patients in persistent vegetative
states partially recover; it is not unheard of to
have people sent into the state by head trauma regain
some cognitive ability, although generally they remain
disabled. A persistent vegetative state that was caused
by lack of oxygen to the brain that lasts for five
years, however, is considered by medical science to
be permanent and irremediable. Terri Schiavo has been
in a persistent vegetative state for fifteen years.
When Terri Schiavo first entered her vegetative
state, she was only 26 years old. She had been married
to Michael Schiavo for five years after meeting him
while they were both in college. At first Michael
Schiavo was “relentless,” in the words
of his friends, in trying to find a cure or treatment
for his wife. He helped Terri’s parents, Bob
and Mary Schindler, move into the area to be close
to their daughter, even renting a large house for
all three of them to share. He dressed Terri every
day, applying makeup and perfume that she used to
wear. He took Terri to California for an experimental
therapy, then back to Florida into a series of rehabilitation
centers and nursing facilities in which she received
different regimens of therapies and care, all with
no success. He attended nursing school in order to
learn how to care for her most effectively. In 1993,
Schiavo received a $1 million medical malpractice
judgment on Terri’s behalf, most of which went
to financing the various cares she went through.
It was only after eight long years of trying to
bring Terri back that Michael accepted that her vegetative
state was permanent. And it was then that he first
looked into having her feeding tube removed, in accordance
with what Terri had expressed to him. In 1988, despite
having signed a “do not resuscitate” order,
Michael’s grandmother was put on a ventilator
and medications to keep her heart beating after she
became brain-dead due to illness. It was only after
the machines were hooked up that the doctors even
looked at the DNR order, and after the family’s
confirmation they had to wait for the medications
keeping her heart going wore off to take her off the
ventilator. At the funeral, Terri told Michael that
if she were ever in the same position as his grandmother,
she would want to be taken off life support, saying
“If I’m ever like that, oh, don’t
let me. Pull that tube out of me.”
And until a few days ago, that expression of intent
by Terri Shiavo, communicated orally to her husband,
was sufficient under the law of Florida (and many
other states) to permit Terri to have the peace she
desired. The courts and lawmakers who have dealt with
these terrible types of situation have spoken virtually
unanimously to say that, when the affected patient
has not provided a written set of instructions, another
person must be the “surrogate decision-maker.”
And in cases where the loved ones of the patient disagree,
preference is always given to the spouse. This is
true not only for questions of whether to take extraordinary
measures to prolong some sort of life, but also for
decisions about funeral and burial arrangements and
questions of inheritance: spouses are always turned
to first. As Dahlia Lithwick of Slate explained over
a year and a half ago in reference to the Schiavo
case, the prioritizing of the spouse is for a very
simple reason: you choose your spouse. You don’t
choose your family. It is assumed your spouse knows
the everyday details of your life and beliefs, and
that if you choose to be with them you trust their
judgment in even the most final matters of your life.
Yet, for a variety of reasons, that judgment has
not been allowed to stand in the case of Michael and
Terri Schiavo. To be clear, I don’t fault the
Schindlers one bit for taking their fight as far as
they can. It must be an unimaginable tragedy to lose
a child, and even worse to have ones child in such
a strange limbo, with Terri’s heart still beating
even though Terri herself has been gone for fifteen
years. The toll of the situation should be recognized
in the fact that it took Michael eight years to accept
any sort of finality with regards to Terri’s
chances of recovery, and slowly start to move in what
he believes to be the direction Terri wanted—to
let her go. I don’t blame her parents for not
wanting to accept that she’s gone, and to make
those steps of their own.
I do blame the Republican politicians that have
seized upon the issue as a most profoundly abhorrent
political opportunity. Court appeals, however drawn-out
they may be, are the proper channel through which
to conduct such a dispute. Terri’s parents had
the legal right to attempt the appeals through the
Florida courts. Those appeals were heard and adjudicated,
at length, and each court ruled in favor of Michael.
The Florida House and Senate, however, had no such
right to pass unconstitutional legislation that was
informally called “Terri’s Law”
giving Governor Jeb Bush the right to overrule all
Florida state courts and issue an order of his own
to reinstate Terri’s feeding tube. The United
States Congress had no right to pass legislation tailored
to specifically throw Terri Schiavo’s case,
and her case only, into federal jurisdiction (presumably
in the hope that a federal judge would provide them
with the outcome they desired). President Bush had
no reason to interrupt one of his record-setting vacations
to return to the White House in order to be able to
hold a dramatic midnight-hour signing of that bill.
Republicans throughout the political world have
seized upon the supposed issue of Terri Schiavo as
an opportunity to promote a “culture of life”—which,
naturally, encompasses not only the naturally sympathetic
horror of an effectively brain-dead woman whose bare
reflexes offer a poignant, if unrealistic, chimera
of hope for her parents, but less publicity-friendly
issues such as abortion and stem cell research.
Republican members of Congress who worked as physicians
before entering politics have utilized this opportunity
to display a particularly hypocritical faux expertise.
Representatives Dave Weldon of Florida, Phil Gringey
of Georgia, and Joe Schwarz of Michigan, have offered
their “medical” opinions upon viewing
short videotapes of Terri Schiavo—these ill-informed
diagnoses, might I add, made by former specialists
in internal medicine, ob-gyn practice, and ear, nose
and throat rather than in recognizing or treating
PVS. Senator Bill Frist, considered to be a front-runner
for the Republican Presidential nod in 2008, declared
that the decision was made “without a clear-cut
diagnosis, or in what my mind was a clear-cut diagnosis.”
I suppose the opinion of a heart and lung surgeon
who has never seen a potential patient in person should
command the pulpit over the objective and thorough
evaluations of seven years of medical examinations
by physicians actually competent to make an analysis.
Or perhaps it is the more obvious explanation that,
as an anonymous memo this last week stressed to Republican
politicians, Terri Schiavo was “a great political
issue” that would “excite” Christian
conservatives. Tom DeLay told a conference of the
religious right-ist Family Research Council that God
brought Terri Schiavo to him in order to publicize
the “attacks against the conservative movement,”
brought by “a huge nationwide concerted effort
to destroy everything we believe in.”
For extra fire and brimstone, DeLay then personally
attacked the grieving husband attempting to do what
he thinks best for his wife, impugning Schiavo’s
character because, in the years since his wife’s
accident, he has fathered children with another woman.
After Schiavo refused to divorce Terri, even though
she has not shown cognizance for fifteen years, he
is reduced to being labeled a “common-law bigamist”
by a United States Representative on the floor of
Congress.
And of course, there is the profound hypocrisy of
one George W. Bush. As Governor of Texas, in 1999
Bush signed the Advanced Directives Act, not only
designating the spouse of a brain-dead patient as
the appropriate surrogate decision-maker in such questions
of extraordinary measures to prolong some sort of
life, but declaring that a committee formed by the
hospital in which such a patient was receiving care
could decide to end such a patient’s life even
if the patient’s entire family and surrogate
decision-maker wanted the life support to continue.
If Terri Schiavo was being cared for in a Texas hospital,
and Michael Schiavo wanted to keep her feeding tube
in but ran out of money to pay for it, a committee
formed from the administration of that hospital could
decide to take her feeding tube out, even though Michael
Schiavo wanted it kept in. Such is the Republican
commitment to life, when the life at stake doesn’t
have enough money to pay for the hospital bills.
Yet this is the President who had to trumpet his
return from the Texas ranch in order to sign a bill
meant only for one particular individual the very
second it passed the emergency session of Congress.
This is the Republican Party that hosted Terri Schiavo’s
brother as a guest of honor at a rally during the
Republican National Convention in New York.
Again, I don’t fault the Schindlers for doing
what they think is best for their daughter. I can’t
imagine what I would do if faced with the same decision—if
my partner were to be judged brain dead by dozens
of doctors, I don’t know if I would have the
strength to take him off life support if I could still
look into his eyes and have the barest hint of hope
that his prognosis might improve, no matter how imaginary
the hope might be.
But at the same time, if I were to be the one whose
life had essentially fled fifteen years before, I
wouldn’t want my family and partner to be locked
in perpetual legal conflict. I wouldn’t want
my partner to remain devoted to an empty shell for
the rest of his life. And I wouldn’t want to
become a particularly gruesome trophy on which politicians
would stake their claims to electoral triumph.
Rabbi Elliott Dorf was quoted in the New York Times
as saying that “At some point or another, we
have to recognize that death has come and begin to
deal with that appropriately, not medically, but through
the mourning process.” The procedures for determining
a patient’s wishes with regard to remaining
on artificial life support are well-established, by
both the legislatures and the judiciary, all the way
to the Supreme Court. By seizing on Terri Schiavo
as grist for the political mill, the Republican politicians
exploiting her family’s pain are merely prolonging
a tragically poignant and painful process. They should
be ashamed. And they should move on.
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