In the early 2000s, America was gripped by the very public legal battle over care for a profoundly brain-damaged young Florida woman.
Focus on the issues raised by the case of Terri Schiavo did not end, however, with her death March 31, 2005, 13 days after the feeding tube that had sustained her for nearly 15 years was removed by a judge’s order.
Her parents and two surviving siblings, a sister and brother, established a foundation, the Terri Schindler Schiavo Life & Hope Network, to assist families of persons with cognitive disabilities or who are medically dependent “in life-threatening situations.”
Over the past eight years, the organization has held annual memorial events while building a network of resources for such families with a strong right-to-life message.
With ties to the Philadelphia area – Terri and her siblings grew up in Lower Moreland Township, attending local Catholic schools – the foundation moved its headquarters here nearly two years ago. Headed by Terri’s brother, Bobby Schindler, as executive director, it has operated since January 2012 out of an office on Forrest Avenue in Narberth Borough.
Now, as the eighth anniversary of Terri’s death was marked this Easter Sunday, the organization has planned its most prominent remembrance this week in Philadelphia.
On Friday, April 5, at 5 p.m., Philadelphia Archbishop Charles Chaput will celebrate a memorial mass at the Cathedral Basilica of Saints Peter and Paul.
The ceremony will be followed by the foundation’s first fundraising and award dinner at the Philadelphia Marriott. The keynote speaker will be former Alaska governor and 2008 Republican vice presidential nominee Sarah Palin.
In a Good Friday interview, Bobby Schindler, a Narberth resident, talked about his sister, the events that thrust a family tragedy into the national and international spotlight, and what has become a life-altering mission for her family.
Terri Schindler, the eldest of the three children of Robert and Mary Schindler, was shy growing up, with a circle of a few close friends. She had a “great sense of humor,” loved animals and enjoyed sketching them, and had talked about wanting to become a veterinarian, her brother said. She had dated little before meeting Michael Schiavo at Bucks County Community College. They married about a year later, in 1983, when she was not quite 21.
In 1986, after Robert Schindler sold his material-handling business, he and Mary retired to the Tampa-St. Petersburg area, and the rest of the family soon followed.
On Feb. 25, 1990, at age 26, Terri collapsed at home. The attack, never decisively explained, deprived her of oxygen to the brain, causing profound damage. (Her husband later brought suit against her doctors, claiming they had failed to detect an eating disorder.)
In the decade that followed, Michael Schiavo and the Schindlers became estranged over the course of her care. The family wanted him to resume therapy that they believed could have improved her condition. His 1998 petition to the court to withdraw life support triggered a series of challenges that led to the Florida and U.S. Supreme Courts – the nation’s highest court declined several times to hear the case – and to intervention, ultimately unsuccessful, by Florida’s legislature, then-Gov. Jeb Bush and, at the end, the U.S. Congress.
Asked why he thinks his sister’s case captured such attention, “It’s hard to know. A lot was just timing,” Schindler said. Conservative commentator Glenn Beck played a role, he said. A Tampa radio host at the beginning, Beck “took the case national,” having switched his initial position in favor of ending life support to advocating for the family’s fight.
Schindler said his family never would have sought the pubic controversy. “Things happened that people couldn’t have predicted. Her feeding tube was removed and reinserted twice. . . . It grew into this monster of a media story.” He said the family’s plea to Michael Schiavo, her guardian under Florida law, always was “just give Terri back to us” to care for.
Today, Schindler said he believes the family “did everything we could.” Terri’s situation changed all of their lives. “It [became] my father’s full-time job looking for help anywhere he could find it,” he said. Schindler himself was called on to be the family’s spokesman at many events, and had to quit his teaching job at a Catholic high school.
Nevertheless, his father “had a difficult time,” feeling he had been “powerless to help his daughter. He was never able to forgive himself.” Robert Schindler died in 2009, after suffering a heart attack. Mary Schindler lives in Florida, where Terri’s sister, Suzanne Schindler Vitadamo, also resides, but she visits in Narberth. She was there this week, helping to prepare for the April 5 events.
Soon after Terri’s death, the Schindler family established the Terri Schindler Schiavo Foundation, now the Life & Hope Network. “Basically, what happened to our family we didn’t want to have happen to another family. There were n organizations to help,” Schindler said. “We wanted to be that organization that we couldn’t find.”
There are misconceptions about his sister’s case, he added. “This was not a right-to-die case. Terri was not dying,” Schindler said. She was relatively healthy physically. No machines were keeping her alive. There had been testimony during the malpractice case that she might have lived a normal life span.
Terri had left no written expression of her wishes, although her husband had testified that she had once said she would not want to live if profoundly incapacitated. The case probably did raise awareness of the ability to write advance directives, Schindler said.
But he said even those who may have taken that step may not be aware that, in many states, provision of nutrition and hydration, which they might consider basic care, is defined as medical treatment.
Increasingly, he and others are concerned that decisions about care for patients like his sister are being made by “ethics committees” of doctors and medical professionals at hospitals. With health care reform, concerns about “rationing” of health care – what Palin has referred to as “death panels” – have only intensified for some.
The Schindler family’s foundation was established with several goals: to be a resource for patients and families facing life-threatening situations; to increase a referral network of doctors, attorneys and other professionals advocating and providing care for these individuals; educating the public about guardianship laws and medical “futility” policies; and partnering with care centers to provide assistance.
An ultimate goal has been to establish Terri Schindler Schiavo Neurological Centers to provide outpatient care and therapies for brain-injury victims. Schindler said this week’s fundraising event is a first major step in that direction. The family hopes to see the first such center opened here in the Philadelphia area.
Before this year, the annual Terri’s Day events were held locally in Florida on March 31, with calls to churches to mark the day with prayer. In 2013, with Easter falling on that date, Schindler said events were scheduled for April 5. He said Chaput, with whom he had communicated when he was serving in Denver, had agreed to celebrate the memorial mass. Palin’s appearance at the dinner was arranged through a speaker’s bureau. “She supports what we are doing,” Schindler said.
At the dinner, the organization will also present its first Terri Schiavo Life & Hope Award to Moe and Sana Maraachli, parents of Baby Joseph. The Canadian couple’s fight against a hospital’s decision to end life support touched off an international controversy in 2011. The baby died in September that year, after his parents brought him to a hospital in St. Louis for surgery that allowed him to return home.
The memorial mass is open to the public. Schindler said the foundation was nearing its goal of about 400 tickets sold for the dinner.
Information about both events and about programs and resources offered through the Terri Schindler Schiavo Life & Hope Network can be found at www.lifeandhope.com.
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