Saving Terri Schiavo

Audrey Ignatoff and Vickie Travis

Make no mistake about it, Terri’s Law represented a great victory, not only for Terri Schiavo and her family, but also for all people concerned with patients’ rights and the quality of health care in America. It resulted from a nonstop worldwide Internet effort that began in the early morning hours of October 11 and continued until the vote came in.

October had been an emotional roller-coaster for Terri’s supporters. On October 10, Judge Richard Lazzara of the Federal District Court in Florida was due to rule on Judge George Greer’s September decision to remove Terry’s feeding tube. Many of these supporters were so sure the case would be settled in Terri’s favor that they relaxed a bit the week before October 10, and even took the time to produce a video of Terri, using still pictures from her website and some video footage sent from Florida. Thus, when Judge Lazzara stated that the case was not in his jurisdiction, the blow landed all the harder.

The Internet ride had started gaining momentum even before then when “Dawn,” a psychotherapist and mandated abuse reporter who prefers not to be identified, called in to the Highway 2 Health Internet radio program to ask, “Where are the mandated abuse reporters in Terri’s network?” Many states have instituted programs through which suspected child abuse can be reported—by trained “mandated reporters”—and investigated. Some states, of which Florida is one, extend this program to adults who are vulnerable by reason of disability or illness. In Florida, statute 415.103 addresses this question and permits intervention. Even before Terri’s husband, Michael Schiavo, requested a court order to kill her by withholding food and water, he had, according to nurses and other credible witnesses, refused to let her enter rehabilitative therapy and had even forbidden the use of antibiotics to treat an infection. This, as Dawn put it, “is physically and psychologically abusive and meets criteria for mandated intervention.”

Dawn pointed out that whereas coverage of Terri’s case has focused on right-to-die issues, in fact the real issues at the heart of Terri’s case are about right to treatment and enforcement of this right. She added: “Terri’s moral and legal right to treatment supersedes the guardian’s right to deny same.”

Dawn was intense. “Homicide is not an acceptable treatment modality. . . . It’s not okay to deny treatment to people and then proceed to terminate them because they didn’t get any better, which is essentially what is being contemplated in Terri’s case. What kind of a ‘treatment option’ is this?”

While Dawn, Audrey, Vickie, Highway 2 Health, The Hospice Patients’ Alliance, and many other groups and individuals worked frantically to help Terri, the judicial machinery ground on. As stated above, on October 10 Judge Lazzara ruled that he did not have jurisdiction to protect Terri’s right to treatment. In the early hours of October 11, Dawn meditated and prayed, seeking a way to achieve maximum impact within a very limited timeframe.

Soon she felt guided to intensify the effort she had begun on that Highway 2 Health program to conceptualize the issues as right to treatment and enforced protection of that right when necessary. Some medical professionals believe that the feeding tube would not be an issue today if Terri had gotten proper treatment 14 years ago, when the initial brain injury occurred, and throughout the intervening years.

Now, in October 2003, a three-phase emergency intervention campaign evolved. Dawn soon had help from Christina, Dee, Donna, Kathy, Margaret, and Rebecca from Terri’s Internet prayer pages, and from us, Vickie and Audrey; we all jumped on board to get Phase One in gear within 48 hours.

Phase One was a letter to Florida Governor Jeb Bush asking him to back up the amicus brief that he had filed on October 7. That brief had stated that forbidding oral sustenance is the “deliberate killing” of a human being, which violates the patient’s “right to life” under existing Florida law. Now, after Judge Lazzara’s ruling, Governor Bush was urged to enforce protective measures to assure Terri’s right to treatment, not termination, and he was reminded that there are statutes on the books empowering and indeed requiring him to do so. The campaign urged people to contact Bush and the media by e-mail, fax, and phone.

On October 13, with no visible sign of life from the governor’s office, Dawn took the intervention up a notch. In Phase Two, she urged people to immediately file abuse reports at the Florida Abuse Hotline re Governor Bush’s failure to enforce Statute 415.103.

On October 15, in accordance with Judge Greer’s ruling, Terri’s feeding tube was removed. Judge Greer had also ordered that she not be fed or given water by mouth, although witnesses testified that she did have the ability to swallow. On October 17, Judicial Watch filed an abuse report and also sent a letter to the Governor about the need to intervene.

Phase Three began on October 18, three days into the deliberate attempt to starve Terri Schiavo to death. Now the focus was further refined, with a specific request to Governor Bush that he address the Judicial Watch complaint. Letters were also sent to the governors of every state, the press, and members of the Florida legislature. These letters pointed out that the Governor of Florida had the power to back up his amicus brief because of laws already on the books to protect the disabled and other vulnerable people.

By this time, an international network known as “Terri’s Angels” had formed, dedicated to working around the clock to save Terri’s life.

Jeb Bush could not ignore the tons of e-mails pouring in from all over the world. The numbers ballooned from 27,000 to well over 167,000. In addition, there were faxes and phone calls coming in all day long. In short, public pressure paralyzed the Florida government, which had to do something, and quickly. Governor Bush issued the following statement, “Today I extended the call of this special session to include legislation that may help in the case of Terri Schiavo. The proposed bill would allow for a stay in cases of withholding nutrition and hydration from patients in situations similar to that of Ms. Schiavo.” The legislature responded and passed Terri’s Law—and not a moment too soon. By the time the law was passed, Terri had had no food or water for more than 6 days. Even Wesley Smith, the tireless anti-euthanasia activist, had been ready to give up. On October 12, he stated in an e-mail to Ms. Ignatoff, “I am at a loss. I fear our only approach now is to hold vigil so our sister does not die alone.”

Terri’s Angels were greatly aided by Ron Panzer of the Hospice Patients Alliance (www.hospicepatients.org), who vigilantly reported all aspects of the case. He was ready to call a worldwide boycott of Florida products and services if Terri’s Law was not passed. His newsletter goes out on the Internet to many subscribers. Many of his Internet articles reached Florida newspapers. The wider media eventually became interested in this story, although they did not report all of the facts accurately.

Peter Kawaja, of Highway 2 Health (www.highway2health.net), ran shows on Terri’s case way before it was covered by Bill O’Reilly, Larry King, and Oprah. In fact, Peter ran a two-hour special on October 1 that included Terri’s father, Bob Schindler, and various activists in the field, including Ron Panzer and Vickie Travis. Vickie suggested that listeners “follow the money trail” to learn why such things happen to Terri and other victims.

Wesley Smith also spoke on Highway 2 Health, calling Terri’s case another step on “the slippery slope from assisted suicide to legalized murder.” With perfect timing, an article by Smith came out in the Weekly Standard on October 21, the very day that Terri’s Law was passed. In it, Smith wrote, “When Terri Schiavo collapsed in 1990, causes unknown, she could have had no idea that 13 years later people the world over would know her name and care very much about whether she lived or died. Yet what began as a private tragedy—a vivacious young woman stricken in the very prime of her life with a brain injury that left her profoundly disabled—has become a story heard round the world.” Supporters did indeed call in from all over the world, including Canada, England, Australia, Germany, and Israel.

Diane Coleman of Not Dead Yet, a coalition of advocacy organizations for the disabled, went to Florida and joined the vigil. Her organization submitted an amicus brief on Terri’s behalf. In a press release, Coleman stated, “We call upon the courts and medical profession to give Terri Schiavo the full protection of due process of the law before starving her to death and pretending it to be an act of ‘dignity’ and ‘respect for autonomy.’”

The fight to keep Terri alive is still going on.

Meanwhile, Terri has been transferred from the Hospice of the Florida Suncoast in Pinellas Park to Park Place of Clearwater, Florida, an assisted-living facility, where she remains on a feeding tube but is not receiving any therapy. Her parents are circulating a petition on the Terri Schindler Schiavo Foundation’s website (www.terrisfight.org) directed toward Florida State Attorney Bernie McCabe, requesting him to investigate Michael Schiavo’s actions with regard to Terri.

Meanwhile, Michael and his lawyer, George Fellos, are still engaged in their campaign to “let her die” because that is “her wish.” (Interestingly, it took Michael fully ten years after Terri was stricken to “remember” that she did not want to live any more if she were disabled.) They are challenging Governor Bush in the courts, saying he interfered with Terri’s “death process” and claiming that Terri’s Law is unconstitutional. Schiavo claimed on national television that “right to life” groups and “right wingers” are behind the fight to save his wife. He also alleged that Terri’s parents want to keep her alive because she makes money for them. In fact, Michael received a very large monetary settlement from his malpractice suit early in Terri’s ordeal. As for Terri’s Angels, most are not wealthy but have contributed hard work, hope, and prayers.

Terri Schiavo is neither in a “persistent vegetative state” nor “comatose.” Her family notes—and they have smuggled camcorders into her room to document their claims—that a person in such a state would not respond to people and objects as Terri does. Many physicians, including neurologists, agree. Sara Green Mele, a speech pathologist, feels that Terri would benefit from speech-language and physical therapies. She states, “Her quality of life would be significantly enhanced.”

Florida’s Advocacy Center for Persons with Disabilities (ACPD) was summoned by the supporters of Terri Schiavo to do their job of protecting Terri by looking into abuses inflicted by her husband, including withholding therapy and keeping her isolated from family and friends. Terri was even denied Holy Communion and Last Rites from her priest, Monsignor Thaddeus Malanowski, before her feeding tube was removed, and a holy medal that was blessed by the Pope was taken away from her.

Michael Schiavo persists in his effort to end his wife’s life, while her supporters doggedly fight to save her. However aware Terri herself may or may not be, she has become the world’s most powerful advocate of patients’ rights and the rights of the disabled, with ramifications affecting the whole health-care system.

Governor Bush and the Florida Legislature had to be pushed, but they should be congratulated for finally acting on behalf of Terri Schiavo and all other disabled people. As the Speaker of the Florida House, Johnny Byrd, put it, “. . . someone needs to be a voice for the voiceless like Terri Schiavo.”

The ride on the Internet was indeed wild. It developed a life of its own that was stronger than any individual or group in the effort to save Terri Schiavo. It was well worth the trip.

Published by:
The Human Life Foundation, Inc.
215 Lexington Avenue, New York, New York 10016