Families
wrestled with Schiavo-like decisions
In Florida, a daughter is relieved her mom
didn't give in to doctors, and a husband enforced his hospitalized wife's
living will instructions
By: Patrick Kampert and Michael Martinez. Kampert reported from Chicago and Martinez
reported from Florida
Oct. 26, 2003
TAMPA -- About four years ago, Rachel Leffel
spent months in a coma similar to the state of Terri Schiavo, the 39-year-old
brain-damaged Florida
woman at the center of an end-of-life legal dispute between her husband and her
biological family.
But today Leffel, 27, is alive and well, beaming and joking in her family's
living room as she sits in her wheelchair and discusses her desire to get an
associate's degree in graphic arts via her computer.
Her mother, Tily Noya, rejected doctors' recommendations that she withdraw life
support for Leffel after a car accident. Noya agrees with the effort by
Schiavo's parents to take over the care of their daughter.
A few miles to the northwest, in Palm Harbor, Ted Rogers comes
home to the house he and his wife, Beth, had begun building two weeks before
Beth was diagnosed with cervical cancer in June 1993. They recently had
celebrated their third wedding anniversary. Beth had a hysterectomy, but the
cancer came back.
Unlike Schiavo, she completed a living will, knowing death was near. Yet Ted
Rogers still endured a painful battle with his in-laws when he obeyed his
wife's written request to stop life support in 1994. She died at age 25. Though
there was some reconciliation, he has not been in touch with his late wife's
family for several years.
Empathy for the husband
Rogers says he empathizes with Michael Schiavo, Terri Schiavo's husband and
guardian, who won a lengthy court battle to remove his wife's feeding tube--following
her wishes, he says--only to be thwarted last week when the Florida Legislature
and Gov. Jeb Bush approved an 11th-hour law to order the feeding tube
reinserted.
The stories of Leffel and Rogers have different endings, but their experiences in
dealing with quality-of-life issues are not unique. As medical technology has
made strides in saving and prolonging lives, more families are being forced to
deal with agonizing choices that barely existed a generation ago.
Bernard Bendok, a neurosurgeon at Chicago's Northwestern Memorial Hospital,
says advances in emergency medicine and hospital care have been beneficial to
many patients with strokes and brain injuries. But he says some critically
injured patients who probably would have died years ago are surviving in
vegetative states and that has led to an increase in loved ones having to make
decisions about life support.
"My impression is [that] it's increasing. On a monthly basis, I probably
face this kind of situation three times a month," Bendok said, adding that
his surgeons' group at Northwestern deals with such situations seven to 10
times a month. "Compared to 10 years ago, it has increased two or three
times."
The visibility of the Schiavo case has spurred a surge in people seeking living
will information. Aging with Dignity, a non-profit group in Tallahassee, has seen demand for its 5 Wishes
living-will kit rise from 200 orders a week to 3,000 since Oct. 16.
Paul Malley, president of the group, said 5,000 organizations nationally are
distributors of the booklet, which is legally recognized in 35 states. In Chicago, Central DuPage Hospital
gives out 20,000 copies every year.
"The common misconception is that this is just for people who are old or
sick," he said. "The case involving Terri Schiavo is a perfect
illustration of why that's not true. People need to talk with their doctor and
their family about their wishes."
Noya's immediate goal after her daughter's accident in the early morning hours
of Christmas 1999 was recovery, and it remained that despite the medical
community's doubts. She didn't believe the doctors' prognosis that her daughter
would never walk, talk or think again. After the accident, exams showed little
brain activity in Leffel and she lay in a monthslong coma.
"They had talked about turning off life support, and I said, `Absolutely
not,'" Noya said.
Leffel can't walk, but she can most certainly talk and think, expressing
gratitude for her mother's decision and regret for having drunk wine and rum at
the family's Christmas Eve party. She drove off alone, despite family
admonishments. It took her seven months to come home--and fully come out of her
coma.
"I look back on it now and I say, `How did we have the strength to do
this?'" said Noya, 52. "To me, I couldn't have gotten through this
without my faith.
"Until you have gone through an experience like this--I've been reading
people's comments regarding Terri [about how] they should let her go--I think
if you have your child in this condition, you don't ever let her go. No
way," Noya said.
Then, pointing out a significant difference in her daughter's case, she added,
"I thank the Lord every day that when Rachel had her accident, she wasn't
married."
In her wheelchair next to her mother in the living room, Leffel said, "It
makes you want to get a living will. I'd leave it [the end-of-life decision] up
to my mother. She has done great things for me so far."
No easy decision
The fact that Beth Rogers had a living will didn't make it easy for her
husband, Ted, now 44, to have her life support halted in 1994. Both were
paramedics; Beth had her dream job, working on a flight-for-life helicopter.
Then the cancer returned. The couple discussed the situation and had living
wills drawn up in March 1994.
"She told me under no circumstances did she want to be put in a nursing
home," Ted Rogers said.
Three months later, Beth suffered a stroke and several seizures. Ted removed
life support, following the dictates of her living will. Her family protested.
"It was an extremely difficult situation emotionally," said Rogers,
who has not remarried. "One would hope that when there's a medical
catastrophe it would bring people together to comfort one another.
Unfortunately, that didn't happen in my case."
Beth Rogers was buried in her helicopter flight suit. Her husband left
paramedic work and moved into teaching emergency medical services full-time at
St. Petersburg College. He said it was too painful to remain in the work that
he and she had shared. He thought about selling the house too.
"It was tough at first," he said. "The whole time we lived there
she had been ill. I had some bad memories. I decided it was time to make some
good memories. We were never in it that long. we had never established
ourselves here. . . . It wasn't really a home. But now it's home."
He works about a mile from the Pinellas
Park hospice where Terri Schiavo resides. As he drives
to his job, he sees the supporters of Schiavo's parents along a nearby road.
"It's causing me to relive the many emotional issues I had to deal with at
the time," he said. "I've been thinking about her a lot lately.
Losing a loved one is something that I would not wish upon anyone."
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