Gone But Not Forgotten

The Family Research Council commemorated the fifth anniversary of the death of Terri Schiavo by hosting a panel discussion, “Terri Schiavo and a Culture of Life: Looking Forward on the Anniversary of Terri’s Death,” in Washington, D.C. on Monday, March 29.

Terri died from dehydration at age 41, on March 31, 2005, 13 days after Judge George W. Greer of the Sixth Judicial Court in Pinellas County, Fla., ordered that her feeding tube be removed.

FRC’s four-person panel included David Gibbs III, lead attorney in Terri’s case and author of the new book, Fighting for Dear Life, the Untold Story of Terri Schiavo and What It Means for All of Us; Terri’s brother, Robert Schindler, who works full time as a pro-life and disability rights advocate for terrisfight.org; Cathy Ruse, senior fellow for legal issues at the Family Research Council; and Robert Destro, a civil rights attorney and professor of law at The Catholic University of America.

Gibbs opened the discussion by explaining that Terri’s case was unusual. Unlike most end-of-life cases, Terri was not being kept alive by a ventilator or a heart machine, but was “a disabled woman who was alive [and], a disabled woman who wasn’t dying,” he said. “There was no illness, no heart disease, no cancer; no issue of any type of expectancy that she was going to die anytime soon.” She was a woman who “just needed food and water.” And now, five years after her death, Gibbs said people are more confused than ever about what really happened.

According to Schindler’s Web site, terrisfight.org, at 26, his sister, Terri, suffered from a cardio-respiratory arrest that led to hypoxic encephalopathy, a neurological injury that was caused by lack of oxygen to the brain. And although she did not need the use of a ventilator to sustain her life, physicians used a percutaneous endoscopic gastrostomy (PEG) feeding tube in order to safely nourish and hydrate her body. “Terri wasn’t dying, she wasn’t brain dead,” Schindler said. “She only needed basic care—food and water—to keep her alive.”

Although Terri’s death has increased people’s interest in living wills, Gibbs said that in his opinion, “most are pro-death in orientation,” and are similar in that they are, “designed to minimize liability and to facilitate the ending of life; but they are not adequately protecting people’s lives.”

Since people may never know all of the health-care decisions that will need to be made on their behalf, Gibbs believes that a living will is not the answer. Instead, he advises people to decide who it is they trust to make their health-care decisions (people usually choose their spouse), and then have a written document that states that if the spouse decides to end life, and the patient doesn’t want that, the responsibility then goes to someone else—a parent, pastor, friend or a panel of people. In Terri’s case, “we had a spouse [Michael Schiavo] that flipped; he was pro-life at the beginning—he wanted her to live—and then he went in a different direction later on and initiated the litigation,” Gibbs said. If Terri had a document that listed her mother or father as the person who would be in charge of making health-care decisions if her husband decided to not continue care, then “she would be alive today.”

Gibbs added that some state legislatures, including Idaho and Georgia, have introduced bills that state that food and water fall under ordinary care, and are “different from life support: a ventilator, a heart machine, a more mechanical intervention keeping a body alive is different than an IV, a feeding tube or feeding by mouth,” Gibbs said. Currently, forty states have the right to deny patients food and water. For example, in 1999, Florida law changed to include feeding tubes as medical treatment. On the federal level, Gibbs said that Congress has shown no interest in pursuing the issue.

Gibbs said that he is focusing on six public policy initiatives:

1. Food and water should never be seen as extraordinary care.
2. No court should order or allow someone to die without a specific instruction in writing—something stating the person’s decision.
3. Citizens should receive a review before a court makes end-of-life decisions. Citing the example that when a court sentences someone to death, the person receives a review.
4. Due to misdiagnoses, before a diagnosis is given, doctors should perform further cognitive assessments, more extensive testing, or a patient should be able to get a second opinion.
5. A spouse who enters into a relationship with a new partner should have their decision-making rights revoked.
6. Immediate family members should be permitted to challenge a decision in court if a health care facility or professional chooses to deny treatment, viewing it as futile.

Gibbs and professor Destro said that regardless of where the health care legislation leads the nation, brain injury cases are going to increase because many returning soldiers have suffered injuries caused by improvised explosive devices (IEDs), while in Iraq or Afghanistan.

Destro says the focus needs to be on returning veterans’ rehabilitative needs: “IEDs cause severe to minor brain injuries, but significant injuries. And dementia is also an increasing problem.” He added that he hopes that science and law will catch up with each other, but “law usually has to catch up with science.

“The true part of the story is our fears about disability,” Destro said. “Be it a stroke or an auto-accident, one can become a statistic. This affects the medical profession in profound ways. It was long thought that nothing could be done for people who have brain injuries.”

After conducting research on the effects of brain injuries, Destro said he found out that there are 16 stages of cognitive mental impairment. And since the majority of doctors can’t spend adequate time with their patients, Gibbs said, “tragically, somewhere between 40- to 50-percent of diagnoses—when you declare someone to either be in a vegetative state or even a minimally conscious state—are wrong. To determine the condition that someone’s in, you would have to have a highly paid neurologist spending extensive amounts of time with the individual, watching them around family and others; and more often than not, doctors don’t have time. . . .  What statistics show is that often times we are misdiagnosing; and that we are now discovering through tests that people who have brain injuries may know a lot more than we realize.”

According to Destro, Terri didn’t receive standard rehabilitation in the early-’90s. “And if you don’t use it [rehabilitative therapy], you lose it. . . . The neglect makes someone worse,” he said. “In regard to brain function, the question is ‘what do we do now?’ In a minimally conscious state, patients can hear, feel and understand.”

Ruse, a senior fellow at the Family Research Council, recalled that in Terri’s case, the media said the issue was complex, but she believes the issues were simple.

She explained that Terri and Christopher Reeve shared a similar condition, in that Reeve was also unable to feed himself for many years before he died. “An ABC News poll claimed that 63 percent of Americans wanted to see Terri die,” Ruse said. “That poll was a fraud. It said Terri was on life support, which she wasn’t. That she had no consciousness, which was hotly disputed. The poll framed the questions as: ‘Should she be kept alive or should she be allowed to die.’ . . . Imagine if those polled had been asked whether she should be allowed to continue living, or allowed to eat, or whether her parents should be allowed to feed her.”

Ruse said the persistent question in 2004 was: “Is assisted food and water more like extraordinary medical treatment, which can be withheld or removed, or more like basic health care, which should always be provided?” She said that Pope John Paul addressed the issue and spoke out in favor of patients’ receiving food and water to provide nourishment and comfort. Ruse contends that Terri died because she was not provided with basic health care.

Despite the efforts of Terri’s attorneys, family, supporters and the initiatives of Congress, President Bush and Governor Jeb Bush to have her case heard by the Supreme Court, “Terri never got a fair trial,” Destro said. . . . Terri was caught up in the perfect medical, legal and political storm.”

Schindler concluded the discussion by analyzing the dynamics of how society, physicians and the legal community view patients living with disabilities. He said that although financial costs are a driving force behind the push toward euthanasia being an acceptable alternative to end-of-life care, “there is also a growing prejudice against those with disabilities, particularly those like Terri,” he said. “All you need to do is tune in to the media to see some of the horribly egregious things that are said on a continuing basis: YouTube and the Family Guy attack families and make a mockery of wanting to provide them with the love and compassion they deserve.”

Schindler said the question he receives most is: “Who would want to live like your sister?” And although living with a disability is not preferable, Schindler explains that it is life none-the-less.

“The wrong question is being asked,” he said. The question should be, “What are we going to do to protect these individuals?”

Melissa Barnhart is an intern at the American Journalism Center, a training program run by Accuracy in Media and Accuracy in Academia.