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Speech expert: Terri trying to talk
Posted By Sarah Foster On 08/02/2003 @ 1:00 am In Front Page | Comments Disabled
On the audio clip, Bob Schindler can be heard asking the kind of questions any loving father would ask his daughter. “How’re doing, Sweetie Pie? Hi. Got a smile for your daddy? How’re you feeling?”
The woman tries to answer, but the sounds that come from her mouth are not words but vocalizations. Maybe they include “fine” and “yeah” – then again, maybe not. Asked to say “hi,” she does. At least she appears to be struggling to oblige and with obvious difficulty makes noises that sound vaguely like that. Or do they?
Terri Schindler-Schiavo before her disability.
Terri Schindler-Schiavo, 39, has not been able to talk for 13 years; not since February 1990, when at the age of 26 she collapsed at her home in St. Petersburg, Fla., and oxygen to her brain was cut off for several minutes. The incident, which has never been satisfactorily explained and has recently raised a host of unanswered questions, left the young woman incapacitated and severely brain-damaged.
Another clip: “Can you say something for me?” Schindler asks. Terri replies by vocalizing.
She doesn’t know it, but her very life depends on how a small group of Florida judges, whom she has never seen and who have not seen her, interpret the strange sounds she utters and the expressions on her face. Is she trying to talk? Is she consciously responding to her father’s queries and prompting? In other words, is she conscious? Can she think? And, ominously, if not – should she be allowed to continue living?
To date, the judges have said no to all these questions, and Terri lives day-to-day with a court-issued death order hanging over her. At this time, the only hope for the brain-disabled woman lies with the Florida Supreme Court and Florida’s Gov. Jeb Bush.
Posting three audio clips and a series of videos clips of Terri on their website at www.terrisfight.org are among the latest strategies by Terri’s family and a growing group of volunteers to muster public support for the incapacitated woman. Her husband and legal guardian, Michael Schiavo, has been attempting for five years to have her feeding tube removed, an action that would result in her slow death by starvation and dehydration within 10 to 14 days.
Schiavo, 39, and George Felos, the well-known “right-to-die” attorney who represents him, maintain Terri is in a persistent vegetative state, or PVS, which under Florida law would permit her feeding to be discontinued. Only through the persistence of her parents, Bob and Mary Schindler, and their attorney – their efforts bolstered by a small but growing group of volunteers – has Schiavo’s intentions been kept in check and not carried out.
As WorldNetDaily reported last November in an in-depth series of articles about the case, the multi-faceted and precedent-setting court battle over Terri began in 1998 (when Schiavo petitioned the probate court to allow him to discontinue his wife’s feeding) and has galvanized disabled and pro-life groups in opposition to what’s perceived as an important foothold for the right-to-die movement.
The issue is whether Terri is in a persistent vegetative state, and if she is, would she want to be kept alive.
Persistent vegetative state?
In lieu of a will or written directive by Terri herself, probate court judge George Greer – who has been in charge of the case almost from its beginning – dispensed with one of the issues at the start by accepting Schiavo’s word at face value, and that of one of his brothers and a sister-in-law, that Terri had told them she would not want to be kept alive by “artificial” means.
During the first trial, held late January 2000, Schiavo told the court he and Terri had talked about life support when her grandmother was in a nursing home, unconscious for weeks and on a ventilator. He testified that Terri had said, “If I ever have to be a burden to anybody, I don’t want to live like that.”
Terri responds to her mother.
The Schindlers maintain Terri would never have said such a thing, that it would be completely out of character. They emphasize that their son-in-law never mentioned Terri’s supposed views when he sued her doctors for malpractice back in 1992 and won a judgment of $1.3 million that was to be earmarked for her care and therapy but was never spent for that purpose.
Be that as it may, as WorldNetDaily explained, Terri is not on what most people think of as “life-support.” She breathes and maintains a heartbeat and blood pressure on her own. She can see, albeit her vision is impaired, and move her limbs. But she needs a feeding tube into her stomach to sustain her life. It’s a very low-tech device, but in Florida today, and many other states, even a simple feeding tube is considered “life prolonging” and on a par with a respirator.
And the tube might not even be necessary. Because she does not drool but is swallowing and controlling her own saliva, many doctors believe she could be fed by spoon, thereby obviating the need for a feeding tube. Judge Greer, however – at the request of Schiavo and Felos – issued an order forbidding any testing to determine Terri’s ability to swallow or whether she could be spoon-fed.
What about the second issue? Is Terri in a persistent vegetative state? Her family says no, and their opinion is buttressed by that of nearly a dozen physicians who signed sworn affidavits that she is not PVS – affidavits Greer promptly rejected as evidence.
In Florida, PVS is defined by statute as a “permanent and irreversible condition of unconsciousness in which there is the absence of voluntary action or cognitive behavior of any kind [and] an inability to communicate or interact purposefully with the environment.”
Hence the audio and video clips on the family’s Terrisfight.org website.
These are brief selections from a total of four hours of videotape filmed last September for presenting at a medical evidentiary hearing held in mid-October. The hearing had been ordered a year before by Florida’s 2nd District Court of Appeals, and was to be a venue for determining Terri’s current medical condition, the availability and efficacy of treatments for her, and their acceptance in the medical community.
Terri Schindler-Schiavo pre-tragedy.
On the video clips, Terri appears to respond to family members and to commands given her by three doctors who examined her at a hospice where she has been living for the past three years.
“You can see on the tapes how she has a big smile on her face as soon as she sees her mother, like she’s opening up a Christmas present,” her father remarked to WorldNetDaily. “That’s what’s so heartbreaking.”
Attorney Pat Anderson, who represents the Schindlers in their ongoing battle with their son-in-law, is in full agreement. In a statement prepared for the appellate court in April, she described the disabled woman’s responses.
“Terri smiles appropriately, she laughs appropriately, she tracks a balloon with her eyes, she tracks a set of flashing lights with her eyes, she opens her eyes wide on command, she squeezes her eyes shut on command, she turns her head and looks in the direction of the speaker, she follows [neurologist] Dr. [William] Hammesfahr’s movements around the room with her eyes, and, perhaps most poignantly, Terri tries as hard as she can to do that which is asked of her,” Anderson argued.
But Felos and two neurologists – one of them a right-to-die advocate – maintain Terri’s vocalizing and apparent expressions of happiness at seeing her mother or her tracking a balloon with her eyes are merely “involuntary reflexes” by a woman in a persistent vegetative state, whose cerebral cortex has been so irreparably damaged her condition cannot be improved by therapy or treatment.
At an appeals court hearing in August 2001, Felos set a high standard for personhood. “The litmus test is whether or not a person can bring a spoon to their mouth,” he said.
To date, the courts have sided with Schiavo and Felos at both county and appellate levels. As WorldNetDaily reported, on Nov. 22, a month following the mid-October evidentiary hearing, Greer ordered Terri’s feeding tube to be withdrawn on Jan. 3.
His decision affirmed the order he issued in February 2000. This had been first upheld, then remanded by the Florida 2nd District Court of Appeals back to his court for the evidentiary hearing. In his recent opinion, Greer casually dismissed the video evidence that Terri is cognizant and the argument that treatments existed that might prove helpful.
“At first blush, the video of Terri Schiavo appearing to smile and look lovingly at her mother seemed to represent cognition,” Greer wrote. “This was also true for how she followed the Mickey Mouse balloon held by her father.” But the judge then claimed the responses did not represent cognitive function because they “were neither consistent nor reproducible.” He said by his count Terri was given 111 commands and asked 72 questions throughout the four hours of videotaped examinations.
“The court saw few actions that could be considered responsive to either those commands or those questions,” he wrote and signed Terri’s death order.
Its execution was put on hold pending an appeal by the parents, and on April 4, Pat Anderson pleaded for Terri’s life – and indirectly for the lives of all disabled people – before a three-judge panel of the Florida 2nd District Court of Appeals. In her words:
… the trial court (Judge Greer) found more persuasive what Terri did not do rather than what she was able to do. This reasoning sets the bar too high for someone in Terri’s condition. Obviously, she is brain-damaged … [but] considering that she has had no therapy for years, it is nothing short of miraculous that she is as responsive as she is on the videotapes. …
The issue is not whether Terri can ever become “normal” again or whether her “quality of life” offends a reasonable person. If these were the issues, it would be a short step to doing away with entire classes of people who have sub-standard neurological responses, including Alzheimer’s patients and children with cerebral palsy. The issue … is whether she exhibits “voluntary action or cognitive behavior of any kind,” per Florida statute. The trial court acknowledged that she does.
Free-lance writer Rus Cooper-Dowda, of St. Petersburg, Fla., – who is disabled and was once considered PVS – attended the appeal hearing and wrote a highly perceptive account describing Anderson’s efforts:
“The family attorney [Anderson] explained that [Greer, at the evidentiary hearing] used a scorecard for response that stacked the deck no matter how Terri responded. If she always responded – it was just primitive brain-stem activity. If she randomly responded – it was not repetitive enough. If it wasn’t as fast as the demander wanted – then, hey, she was ‘too’ disabled.
“… The judge asked for an assurance that Terri could be restored by treatment before treatment was tried. He wanted to know the probability of function restoration for Terri the way people want guaranteed winning odds from their bookies before they bet any money on the Super Bowl. Ms. Anderson gently pointed out that medicine and life didn’t work that way. She asked what harm there would be in a trial period of full therapies before deciding such therapies wouldn’t work.”
Felos in his comment period asked that there should be no more automatic stays on her starvation order because they were just meant to delay, and that no treatment that has not been tried or discussed before fall 2002 be allowed if requested in the future. He also argued that allowing Terri to live would be “poor public policy.” His requests were not granted.
According to Cooper-Dowda, Felos expressed “great horror” that anyone “in [Terri's] condition” – as he put it – would want to be photographed, especially someone who ate with a feeding tube. He further inferred that to be counted among the living one must at least be able to “ask for a ham sandwich.” This is a recycling of the argument he used at an earlier hearing in August 2001, when he told the appeals court: “The litmus test is whether a person can bring a spoon to their own mouth.”
Perhaps it was this remark that inspired Anderson to tell the panel: “The fact that Terri Schiavo cannot bring a spoon to her mouth should not be a death sentence.”
But apparently it is.
On June 6, Judges Chris Altenbernd, Carolyn Fulmer and Thomas Stringer Sr. handed down a decision concurring again with Greer’s original order of Feb. 11, 2000, that Terri must die.
Altenbernd, who authored the ruling, accepted all Greer’s long-standing opinions: that there was no treatment that would restore Terri’s cerebral cortex, that her actions were essentially reflexes, that no therapy would improve her condition, and that Terri would not want to be kept alive.
“In the end, this case is not about the aspirations that loving parents have for their children,” Altenbernd opined. “It is about Theresa Schiavo’s right to make her own decision, independent of her husband and independent of her parents. In circumstances such as these, when families cannot agree, the law has opened the doors of the circuit courts to permit trial judges to serve as surrogates or proxies to make decisions about life-prolonging measures.”
And from an earlier ruling by the 2nd District Appeals Court Altenbernd quoted approvingly:
…the difficult question that faced the trial court [Judge Greer in 2000] was whether Theresa Marie Schindler Schiavo, not after a few weeks in a coma, but after 10 years in a persistent vegetative state that has robbed her of most of her cerebrum and all but the most instinctive of neurological functions, with no hope of a medical cure but with sufficient money and strength of body to live indefinitely, would choose to continue the constant nursing care and the supporting tubes in hopes that a miracle would somehow recreate her missing brain tissue, or whether she would wish to permit a natural death process to take its course and for her family and loved ones to be free to continue their lives. After due consideration, we conclude that the trial judge had clear and convincing evidence to answer this question as he did.
“Nothing in these proceedings has changed this conclusion,” he declared. “The extensive additional medical testimony in this record only confirms once again the guardianship court’s initial decision.”
And with that, Altenbernd – with Fulmer and Stringer concurring – further widened the doors of the lower courts to make life and death decisions about folks like Terri and other disabled people.
A petition by Anderson on behalf of the Schindlers for a re-hearing before all 13 judges of the 2nd District Appeals Court was rejected July 10, and Anderson is petitioning the Florida Supreme Court to review the case. Upon learning of the petition, the 2nd District Court granted a 30-day stay against removal of Terri’s feeding tube.
On Thursday, Michael Schiavo filed an emergency motion asking the Florida Supreme Court to lift the 30-day stay.
‘Terri is trying to talk’
At this point it seemed that nothing could get much worse for the Schindlers. The courts have written Terri off as a “vegetative” person whose condition is irreversible and beyond hope, and it may be just a matter of time before the nurses at the hospice where she is staying are directed to remove her feeding tube.
But the case took a turn upward last week when Sarah Green Mele, a speech-language pathologist on the staff of the top rehabilitation facility in the country, declared in a nine-page sworn statement that Terri is definitely not in a persistent vegetative state and that she is trying to talk. [Read Mele's entire statement.]
Anderson is filing Mele’s statement with her petition to the Florida Supreme Court early next week.
Sara Mele is not a neurologist. She works with people that many neurologists, such as Dr. Ronald Cranford – one of two experts called by Felos to examine Terri – write off as unconscious or in a persistent vegetative state.
Mele has been on the staff of the prestigious Rehabilitative Institute of Chicago since 1996 and before that at the Baylor Institute for Rehabilitation in Dallas, Texas. The Rehabilitation Institute of Chicago, which is affiliated with Northwestern University, is rated within the rehabilitation community as the top facility in the country. This past week, U.S. News and World Report named it No. 1 in the field for the 13th consecutive year.
Mele is both a practitioner and lecturer, with an extensive private practice in addition to her teaching and other responsibilities at the institute.
“I treat many patients who have had diffuse brain injury, both anoxic and hypoxic (deprived of oxygen), and am familiar with states of impairment known as coma, coma-like, minimally conscious, and persistent vegetative state,” she stated. In connection with her practice of speech-language pathology, she evaluates patients and teaches others how to evaluate swallowing functions.
Mele noted in evaluating patients for rehabilitation, the institute does not track the diagnosis made by caregivers, but does its own evaluations “because the misdiagnosis rate is so high.”
Although she has not examined Terri in person, Mele did review all her available medical records, including those for physical therapy, speech and language therapy and occupational therapy given during the first two years of her disability. She studied the videotapes presented at the October medical evidentiary hearing, along with the audio recordings of Terri and her father.
Mele concluded Terri is not in a coma or persistent vegetative state, exhibits “purposeful though inconsistent reactions to her environment, particularly her family,” and would benefit significantly from a rehabilitation regimen that includes speech therapy and other therapies.
Here are a few of her conclusions:
“Her eye movements, easily observed on the videotape, are particularly suggestive that she recognized family members and responded. She also appeared to have sufficient sustained attention to track a balloon. It is not my opinion that these behaviors are merely reflexive. The entire range of behaviors listed above, and each and everyone of them, are inconsistent with a diagnosis of persistent vegetative state.”
“… Mrs. Schiavo is clearly aware of her environment and interacts with it, albeit inconsistently. She is able to comprehend spoken language, and can, at least inconsistently, follow simple one-step commands.”
“Terri is clearly vocalizing. She does not appear to vocalize at random during these examinations. Her vocalizations are generally purposeful and usually in response to specific environmental stimuli, most particularly family members.”
Mele noted the family has been trying to coach Terri in basic speech and that she seems to say “yeah.” However, she needs therapy.
“Her use of this sound ['yeah'] on the audiotape is apparently in response to her father,” she wrote. “It is reasonable to conclude that Terri is trying, despite her motor deficits, to speak as best she can. Terri is clearly a suitable candidate for speech-language therapy.”
Terri has had no therapy whatsoever in 10 years, and in Mele’s view would benefit significantly from speech-language therapy, physical therapy and occupational/recreational therapy. If these were provided, “her ability to interact with her environment and her ability to communicate can be enhanced. Her quality of life can be significantly enhanced.”
Mele specifically recommended Terri be given access to an “environmental control system,” which enables people like her to turn their radio or television on or off, change channels and control the volume. With such a system – and if trained in its use – Terri could turn the lights on and off in her room.
Also important would be implementation of a “yes/no” system and training in its use. “Such a system could permit Terri to more effectively communicate.”
Then there’s the matter of swallowing and feeding. Because Terri has “sufficient swallowing ability to handle her own secretions,” Mele recommends tests to determine “swallow function” for fluids of different consistencies. “It has been my experience that patients similar to Terri have been able to accomplish food intake,” she said, and explained that if Terri could, it would allow her greater interaction with her family and at social situations through enjoyment at mealtimes.
Mele said numerous disabled patients she has worked with told her that being able to eat “would make the difference between their desiring to live or die.”
She concluded Terri would “within a reasonable degree of clinical probability, be able to improve her ability to interact with her environment, communicate with others and control her environment if she were given appropriate therapy and training as outlined above.”
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