Growing Schiavo foundation moves to Philadelphia

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PHILADELPHIA -- By now, eight years later, the details and debate over his sister's situation -- her diagnosis, her prognosis, her wishes, her autopsy -- are no longer that important to Bobby Schindler.

For him, one thought dominates: Terri Schiavo deserved to live.

Mr. Schindler now heads a growing foundation to help others in similar situations. Every year since her death, they've held a "Terri's Day" of remembrance.

This year, the Terri Schiavo Life & Hope Network has moved from Florida to the Philadelphia area, where the Schindler and Schiavo families are from, and the event has grown.

Today at 5 p.m., Philadelphia Archbishop Charles Chaput will celebrate a Mass dedicated to Terri Schiavo.

Schiavo died on March 31, 2005, after 15 years in what doctors termed a persistent vegetative state. Her case was marked by an excruciating public family battle that traversed the courts, prompted an unprecedented session of Congress, drew the attention of the Vatican and inspired countless Americans to complete "living wills" spelling out what care they did -- or did not -- want in the event of severe injury or illness.

Her husband, Michael, said she wouldn't have wanted to live this way. Her parents and siblings said she would have chosen life, no matter what.

It is a decision that faces many families daily, although rarely in such a public arena.

Oddly enough, most people -- 85 percent to 90 percent -- say they would not want to be kept alive in a persistent vegetative state. But when they're deciding for another family member, it's a different story.

"Many families feel a strong obligation to keep a family member alive," said John Hansen-Flaschen, head of pulmonary and critical care at the Hospital of the University of Pennsylvania.

Often, the simple act of a finger that moves or an eyelid that flutters gives them hope, however faint.

But fiscal concerns are real. "If you ask the question, 'do you want your money to go to this,' most people say no," Dr. Hansen-Flaschen said. "But if you ask the question about individual rights, people say yes."

He thinks most people don't have a problem with a family caring for a patient in a persistent vegetative state at home. But if the patient is in an acute care hospital, where the beds are always full, that amounts to a person who likely will not get better blocking access for a person who likely will.

In the extreme cases where the family wants a persistently vegetative patient who is dying revived, Dr. Hansen-Flaschen dislikes the often-invasive measures necessary -- "poking holes in people, breaking ribs, causing bruises. It feels very unnatural and wrong to be doing violence to such a person."

Meanwhile, in the nearly 25 years since Schiavo first collapsed, this area of medicine has "changed dramatically," said John Whyte, director of the Moss Rehabilitation Research Institute.

Recovery of consciousness is happening more often than long believed. "It's not common," Dr. Whyte said. "There is significant long-term disability. But in general, the prognosis is more positive than many people thought."

New treatments also are showing promise. Zolpidem, a sleep drug, has helped some in vegetative states regain consciousness, if only for hours. It's no magic bullet, Mr. Whyte said. "But it shows us that not everyone who is vegetative," even for a long time " is irreversibly vegetative."

Mr. Schindler, 48, a former math and science teacher in Florida, thinks many patients are being warehoused. Last year, the foundation established a Center for Disability in the Public Square -- a data-gathering and information-sharing network. In his office, he has a sketch of a rehab facility he'd like the foundation to build, although he concedes it is likely a long way off.

The foundation, begun in 2000, has seen its revenues grow steadily, from less than $20,000 in 2005 to nearly $700,000 in 2011. That year, contributions were bolstered by a $100,000 prize from the Gerard Health Foundation, a pro-life philanthropy in Natick, Mass.

Mr. Schindler said the foundation often can steer people to legal help and other resources.

Sara Harvey, of Horseheads, N.Y., just north of the Pennsylvania line, has been battling officials over her husband, Gary, who has been in a persistent vegetative state for nearly seven years, after falling down steps and suffering a traumatic brain injury.

A judge had named the county Gary Harvey's guardian in 2007, and in 2009 officials planned to remove his feeding tube. Ms. Harvey contacted Mr. Schindler, who has petitioned the court to name him a legal guardian.

No decision has been made, but Ms. Harvey credits Mr. Schindler with saving her husband's life so far. "Bobby's like an angel over my husband."

An analysis by the nonprofit clearinghouse GuideStar shows that in 2010, the network dedicated only 40 percent of its spending to program services. Nearly half of expenditures went just to fundraising, a percentage that dismays Mr. Schindler.

"I wish there was more to show for it," Mr. Schindler said. "Fundraising is always a struggle, because of the apathy out there. ... I hate the amount of time I spend to raise funds."

In 2011, the foundation spent nearly $46,000 on travel. Mr. Schindler said he goes to 20-plus events a year.

Documents for 2011 list three key employees and their pay: Mr. Schindler got $47,062; his mother, Mary, the office administrator $23,250; and a sister, Suzanne Vitadamo, the treasurer, $39,042.

Terri's father, Robert, died in 2009 -- broken-hearted that he was unable to save his daughter, Bobby Schindler said.

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