Regret, not reform, marks death anniversary

Editor's note: The following article is by Diana Lynne, author of a powerful, comprehensive book on Terri Schiavo's life and death, entitled "Terri's Story: The Court-Ordered Death of an American Woman."

The court-ordered dehydration death of 41-year-old Terri Schiavo one year ago today sparked ire and prompted pledges of reform from a galvanized Capitol Hill. A year later, the ire has evaporated and the pledges remain unfulfilled.

Sen. Sam Brownback, R-Kansas, was the only lawmaker who appeared with Schiavo's parents and siblings yesterday at the launch of the Terri Schindler Schiavo Foundation in Washington, D.C., which WND reported seeks to combat the "medically sanctioned killing of the disabled."

Sen. Mel Martinez, R-Fla., who sponsored the unprecedented congressional bill that sought a federal court review of the Schiavo case, announced plans to team up with disability-rights advocate, Sen. Tom Harkin, D-Iowa, to craft legislation that would give incapacitated people new federal rights in cases of family disputes and no written advance directives.

No legislation materialized and in June 2005, Martinez declared he'd had second thoughts.

"I really probably come to the view this has to be more resolved at the state level, seems like the kind of issue the state courts deal with," he said. The concession followed a firestorm of controversy over a memo circulated by his legal counsel suggesting his colleagues could make political hay by taking up the cause of the brain-injured Florida woman.

Martinez' about-face also came the day after the release of the medical examiner's report of Terri Schiavo's autopsy, which confirmed her brain had shrunken to half the weight of a normal brain and exhibited extensive damage at the time of death. Even though the medical examiner emphasized the diagnosis of persistent vegetative state, or PVS, is a clinical diagnosis gleaned from a living patient – not during post-mortem examinations – his statement that their findings were "consistent with" PVS was seized upon by proponents of Terri Schiavo's death as justification.

The media portrayed the autopsy report as vindication for Terri's husband, Michael Schiavo, who waged a seven-year court battle against her parents and siblings to end her life. Polls posing leading questions similarly portrayed an American public outraged over Congress' intervention in the family affair. The reported backlash had a chilling effect on Capitol Hill.

While federal lawmakers apparently lost their political will, state legislators in a handful of states have taken a stand.

In the months leading up to, and after Terri Schiavo's death, a dozen states took the first legislative steps toward preventing future similar cases. Lawmakers in eight states – Alabama, Georgia, Hawaii, Iowa, Kentucky, Michigan, Minnesota and South Carolina – proposed bills identical to, or inspired by the National Right to Life Committee's Model Starvation and Dehydration of Persons with Disabilities Prevention Act,which was inspired by the 2003 removal of Terri Schiavo's feeding tube.

"For years, people who never asked to die have been quietly starved without much public attention, based on state laws and court opinions that permit third parties to make deadly decisions with little or no scrutiny or accountability," said attorney Burke Balch, the director of the NRLC's Robert Powell Center for Medical Ethics and the chief architect of the model law. "The outcry over the Schindler-Schiavo case has awakened millions of Americans to the inhumanity of this practice. Now we must act to reverse this trend, and restore a presumption against starvation and dehydration."

The model Act creates a presumption in law that people incapable of expressing their wishes would be given nutrition and hydration, so long as their provision is medically possible, would not itself hasten death, and can be digested or absorbed so as to sustain life.

The legislation under consideration in Minnesota passed out of a House committee in early March. It is expected to pass the full House, but it's fate in the Senate is said to be unclear. Meanwhile, the bill in Georgia was withdrawn by its sponsor.

With the urging of Terri Schiavo's brother, Bobby Schindler, to "err on the side of human life," a Senate panel advanced a proposed law that would similarly require incapacitated people be kept alive unless they previously authorized the withholding or withdrawal of feeding tubes. Lawmakers in the House, however, bawked at the mandate, calling it governmental intrusion, and gutted the proposal.

"Why should we want to shove a feeding tube down somebody's throat just because somebody says that's pro-life," Rep. Peppi Bruneau, R-New Orleans, questioned.

The final version of HB675 signed by the governor on July 11, 2005 outined scenarios in which a spouse could not make end-of-life decisions for an incapacitated patient. Specifically, husbands or wives who are living in a marriage-like setting with another person – as Michael Schiavo was – would be removed from medical decisions involving their disabled spouse.

A measure making its way through the legislative labyrinth in Ohio aims to bar the removal of feeding tubes if there's dispute among relatives as to the incapacitated person's wishes, as in the Schiavo case, and the opposing relative can present evidence to support their opposition.

Lawmakers in Kansas have taken a different tack. Senate bill 240, which passed out of committee in early March, applies the standard of evidence, "beyond a reasonable doubt" used in criminal court to Terri Schiavo-like cases in which family members are in dispute over the incapacitated person's wishes. This standard replaces the "clear and convincing" standard employed in the Schiavo case.

Disability activists express concern they've lost ground in the battle to promote meaningful safeguards for the thousands of disabled Americans in the year since Terri Schiavo's death.

They point to the case of 11-year-old Haleigh Poutre, who was allegedly beaten by her adoptive mother and stepfather into what was believed to be a permanent state of unconsciousness. The Massachusetts Department of Social Services successfully sued to disconnect her ventilator and feeding tube. Poutre's death was blocked, however, by a court challenge mounted by her stepfather, who would have faced a murder charge had she died.

Within days of the court order to remove the girl from life support, DSS reported she showed signs of awareness and an ability to follow simple commands.

"This case raises questions about doctors' 'rush to judgment' in declaring people with brain injury permanently unconscious and about the state's – through the courts and its agencies – eagerness to withhold treatment and end their lives," said Stephen Drake, a research analyst with the national disability rights organization Not Dead Yet.

Drake attributes the lack of reform in the wake of Terri Schiavo to an "inability or reluctance" on the part of the media to engage the general public in open, complex discussions about apparent violations of civil rights caused by flaws in guardianship and advance-directive laws.

"The media, pundits and demagogues have all but erased that complexity from the public consciousness," said Drake.

Be sure to get your copy of "Terri's Story: The Court-Ordered Death of an American Woman."

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Part II: Will you be the next Terri?

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Was autopsy the final word?

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